[This Transcript is Unedited]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS (NCVHS)

Workgroup on the National Health Information Infrastructure

April 26, 2005

Holiday Inn Capitol
550 C Street, SW
Washington, DC 20024

Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway, Suite 180
Fairfax, Virginia 22030
(703) 352-0091

TABLE OF CONTENTS

SUBCOMMITTEE ON NATIONAL HEALTH INFORMATION INFRASTRUCTURE

MEMBERS

  • Dr. Simon Cohn, CHAIR
  • Jeffrey S. Blair
  • Dr. Richard K. Harding
  • Dr. Stan M. Huff
  • Robert W. Hungate
  • C. Eugene Steuerle
  • Dr. Paul Tang
  • Dr. Kevin C. Vigilante

STAFF

  • Mary Jo Deering
  • Cynthia Baur
  • Jay Crowley
  • Linda Fischetti
  • Kathleen Fyffe
  • Robert Kambic
  • Dr. Eduardo Ortiz
  • Amy Patterson
  • Anna Poker
  • Steven J. Steindel
  • Karen Trudel
  • Cynthia Wark
  • Michelle Williamson

P R O C E E D I N G S [9:05 a.m.]

Agenda Item: Call to Order, Welcome and
Introductions – DR. COHN, Chair

DR. COHN: Okay. Well, why don’t we get started here. I want to
welcome everyone — good morning. I want to call this meeting to order.

This is the first day of two days of meetings of the Workgroup
on the National Health Information Infrastructure of the National Committee on
Vital and Health Statistics. The National Committee is the main public advisory
committee to the U.S. Department of Health and Human Services on national
health information policy.

I’m Simon Cohn. I’m the Associate Executive

Director for Health Information Policy for Kaiser Permanente and Chairman of
the Committee as well as this Workgroup.

I want to welcome Workgroup and Committee members, HHS staff, and others
here in person. [Dr. Cohn asks members to mute telephones to prevent feedback.]

Obviously, I want to welcome those listening in on the Internet and I just
want to apologize to everybody for having either some funny noises or feedback
as we sort of go forward, although we will be asking those who are listening in
on direct lines to mute their lines they are not speaking.

Obviously, I want to remind everyone to speak clearly and into the
microphone.

Now, let’s have introductions around the table and then around the room.
For those on the National Committee, as always, I would ask if there are any
issues coming before us today for which you have any conflicts of interest,
would you please so publicly indicate during your introduction?

[Introductions; no conflicts of interest stated.]

DR. COHN: Okay. Well, welcome, everyone, and those who are dialing in, John
Paul and Anna, would you introduce yourselves?

MR. HOUSTON (by phone): Certainly. My name is John Houston. I’m with
University of Pittsburgh Medical Center. I’m a member of the Committee as well
as this Workgroup. I have no conflicts.

MS. POKER (by phone): Anna Poker from AHRQ, staff to the NHII, and lead
staff to the Quality Subcommittee.

DR. COHN: Okay. Well, thank you all. And I have no conflicts of interest
for this session.

I first of all want to start by thanking Mary Jo Deering, our lead staff
for putting the agenda together and I think it will be a very interesting day
and a half.

I also want to emphasize to all here that this is an open session. Those in
attendance are welcome to make brief remarks as well as signal me and you can
certainly ask questions also.

For those on the Internet, obviously we welcome email and letters on any of
the issues coming before the Workgroup, so once again, we do stay open, we are
open, and we do want to emphasize the level of participation.

I want to take just a minute and talk about the agenda and sort of the
framing of the day and a half.

As we’ve looked at these hearings, and these hearings on what I describe as
the personal health dimension — Mary Jo talked about as personal health
records, but we lack a taxonomy at this point — we felt that given that we
have new membership as well as a new Chair of the Workgroup that it was useful
to take a couple of minutes and reflect on the nature of the hearings over the
last year and a half.

And I want to thank Mary Jo for being willing to take on what I think is a
tough task of trying to sort of put together various input from what’s been, I
think, six or seven separate hearings at this point so that we all have sort of
an understanding of what has come before, and so, Mary Jo, thank you very much
for that beginning.

Now, we’re also going to be taking a look this morning at sort of what I
must describe as updates and developments, and we have presentations from Linda
Fischetti, Cynthia Baur and David Lansky just sort of updating issues and
things that we have talked about previously, sort of status changes and
developments and what’s going on with the personal health dimension.

Now, this afternoon we start moving into talking obviously to other groups
— health plans, additional provider groups — to once again get a better sense
of their interests and actually both the use, value case, business case for the
personal health dimension. Now — and that’ll be pretty much today.

At the end of the day, we’ll spend some time just sort of reflecting on what
we’ve heard in preparation for tomorrow.

Now, knowing that I come out of another Subcommittee where we typically do
two-day hearings and we like to get people out so they can get home before
midnight, we are going to be starting at 8:30 in the morning tomorrow. We will
go through lunch and adjourn around 1 o’clock.

And we will have additional hearings tomorrow morning. We also have
employers and quality advocacy organizations, but very interestingly, we’ve
asked some economists to come in and talk about some of the economic forces
that may be underlying all of this.

I mean, to my view, the issue of business case as well as value case are
obviously critical in whatever advice we give to the Secretary in this area.

And then we’ll at that point begin to talk about next steps for these
discussions.

I think my hope would be is that sometime later on this year we would be
able to prepare at least some sort of an update document for the Secretary on
any observations as well as suggestions for next steps in this area — not that
those will necessarily be the end of our hearings on personal health records
but at certain points you do want to update the Secretary on what’s going on as
well as our thoughts on that, so we will begin to talk about what will help us
move in that direction.

Now I ask if there’s any questions from the Workgroup or staff people before
we jump into our first session? Okay.

Well, Mary Jo, thank you for being willing to try to put things together for
us. Please.

AGENDA ITEM: Presentation — MARY JO DEERING

MS. DEERING: Well, “try” is, I think, the operative term, and
because we do have two members on, I will probably do a little more reading of
my slides than I normally, you know, would want to do.

So I’ve titled my presentation “What We’ve Heard So Far.”

But my first slide, for those of you on the phone —

DR. COHN: Mary Jo, you’ve still got to get closer to the microphone.

MS. DEERING: Okay. Is this going to be better?

DR. COHN: Yes.

MS. DEERING: Okay. The first slide is the graphic that was in our report,
“Information for Health: A Strategy for Building the National Health
Information Infrastructure.”

And I put that up because it shows the three overlapping dimensions, and as
Simon has already noted, we do have a vocabulary issue here. We have the
concept of the personal health dimension, we have the concept of the personal
health record, we have the concept emerging of the personal health record
system.

And I think from my perspective, when we use the term “dimension,”
it was indeed the very broadest information space, as virtual as it was real,
where all kinds of information could reside in which different people had
different interests.

And so this graphic was intended to be important for one primary reason —
to show that the personal health dimension is equally important with the
population health and the health care provider dimension.

Yes, indeed, we have had a lot of hearings. For those of you on the phone,
on July 24th, 2002, we looked at PHR models and issues and integrating email.

In January of 2003, we looked at data sets, standards, identification, and
authentication.

In August of 2003, we heard expert and policy views on PHRs.

Last November, in 2004, we heard about Federal interests. We heard more
examples of PHRS, both those that what we were then calling
“tethered” or “untethered.” Again, that language, too, is
evolving, either those that are totally patient-centric or those that are
derived from EHRs.

And then just this past January, we heard about consumer and provider
perspectives and we began to hear a little bit about the business case.

My next slide says “Full Disclosure,” because this really is a
sampling of key themes and messages, and I don’t really claim that it’s a true
synthesis or even a true random sampling here. But I think that it will show
the scope and flavor.

And for those of you on the phone, I’m holding up about two inches of
documents that represent, you know, testimony and PowerPoint slides and
transcripts and everything. So there’s a lot there — there’s a lot of there,
there.

So anyway, we’ll begin a little bit by: What did we learn about consumer
attitudes and consumer acceptance?

Consumers are eager to obtain health information on line. They have concerns
about privacy that are strong and well-documented. They want to be able to
control their PHR as much as possible. The more educated about the PHR and the
more experience they have, the more open they are to the concept. Familiarity
definitely breeds acceptance and friendship, as opposed to contempt, in this.

Among the privacy concerns, of course, are that for the protection of
information, almost 91 percent of respondents in most polls, depending on which
survey you’re looking at, feel either somewhat or very strongly concerned about
the privacy of their personal health information on the Internet.

On the other hand, some polls do show that people believe that technology
does, or can, provide adequate protections.

People who suffer from chronic illness or who are frequent health care users
are less concerned about privacy and security, and while this didn’t come
through the testimony in this hearing, I think in the privacy hearing, those
with acute illnesses feel the same. If you are sick, you are less concerned
about your privacy if you recognize that your care depends on it.

There was a 2005 poll, however, that came out that was just about a dead
heat in terms of 48 percent saying the benefits of EHRs outweigh the risk, and
47 percent saying the risks outweigh the benefits.

Who are the users? Those who have more office visits, with more chronic
problems, those who are taking care of elderly parents, those who are in the
middle band of 46-64, and those who are familiar with the Internet.

Markle found that in presenting a menu of functionality that over 70 percent
of respondents would use one or more of the following four top features: Email
my doctor, 75 percent; track immunizations, 69 percent; note mistakes in my
record, 69 percent; transfer information to new doctors, 65 percent; get in
track my test results, 63 percent. And 35 percent said they would use seven or
more of those features if it were available.

I have now a different slide that shows a Geisinger study of what would
drive patient use of an EHR, and lab results was the top one. Scheduling
appointments or canceling appointments was the second. Requesting drug
renewals, requesting medical advise, finding disease specific information,
receiving personalized health info and other things were down further.

We did hear quite a bit about what patients like about it, and I’ll repeat
again: Not only does familiarity breed friendliness, but we heard a lot of
enthusiasm.

Now, by definition, there’s a dual bias, dual selectivity, going on here.

First of all, it’s only those people who are more attuned to PHRs who are
going to use them. And secondly, no matter how hard we tried by definition, we
heard from people who like them.

So my slide here says “More, more, faster, faster,” that age is
secondary.

Pediatric access is critical for mothers of little kids who are trying to
track immunizations, and adult children assisting their parents.

Usability is critical. That’s one thing that I don’t think we’ve spent a
whole lot of time on. It comes up now and again, and whenever it comes up, it’s
said very forcefully that no matter what else you get right, if it ain’t
usable, it won’t be used. And so the attention to interface issues and user
testing issues would be very strong.

“Other things being equal” is one quote. I would prefer to go to a
doctor who provides it, provides the information I need. It’s easy to find the
information I need.

In the various presentations, there were features of a very patient-centric
PHR or PHR system that came forward. There would be both structured data with
clinical elements like conditions and medications and allergies, test results,
health risks, surgeries, symptoms, clinical findings, care plans, et cetera.

But also unstructured data like journal entries, feedback about care,
unstructured messages.

There would be some functionality around portability and share ability,
including for emergency record summaries, the ability to integrate with paper,
fax, electronic, phone and maybe even a smart card, interoperability with
electronic data with other systems. And then other bundled features that could
include secure messaging, automated feedback, printable reports, health risk
assessments, health behavior programs.

In Markle’s work, which was a collaborative effort to help take a look at
what a PHR was thought to be and ought to be, the attribute of a
patient-centric personal health record included that it enables each person to
control his or her own PHR that contains information from one’s entire
lifetime, that contains information from all health care providers, that it’s
accessible any place, any time, it’s private and secure, it’s transparent, and
that individuals can see who entered each piece of data, where it came from and
who has viewed it, and that it permits the easy exchange with other systems and
professionals.

Moving into those that are derived from EHRs that we, you know, have in
other places sometimes called “tethered,” perhaps, but more
specifically those that derive from an existing clinical system, why, we heard
that they often are just an extra layer on the enterprise EHR system, that in
addition to providing, you know, a wide variety of general health information
and services of the type that we’ve heard previously, that there’s a filtered
access usually to clinical data in most cases, there’s some kind of a
gatekeeper function, but that many of these do provide communication including,
you know, secure messaging — it seems to be an increasingly built-in
functionality, communication with providers, customer service, and even with
payers.

Now, this is a slide that some of you will remember from Peter DeVault of
EPIC who took us through the organic evolution of a PHR.

So the first little graphic here shows a big circle with an EHR and a
little circle with a PHR inside it.

The next one shows that the PHR is sort of springing full grown from the
head of Medusa, so to speak for an old Greek analogy, that it’s emerging and
exiting the EHR.

Then, I don’t know if you can see that there’s a very faint yellow ring.
It’s the PHRs orbiting the EHR, like a moon, and you have the PHR orbiting two
EHRs, showing how that it could be linked to them.

But then Peter also suggested that the PHR could be viewed as a special
case of the EHR where while it doesn’t overlap the EHRs, there are very direct
information flows and links and that the PHR even feeds into the EHR. So this
is the view of the relationship of the PHR and the EHR.

And within these provider, or tethered, models, why, the business case has
tended to be — I mean, sometimes it is certainly offered free, but it is also
sometimes offered by subscription, or it could be a tiered service, some of it
is free, some of it you pay for. It could be based on a transactional model
where either there’s actually a fee for the transactions or there’s a cost
saving from the transactions that offsets the cost of offering the PHR, or the
payer could just outright sponsor them.

Some of the barriers we heard about from the provider perspective are that
clearly, since everyone, I think, nowadays agrees that the optimum value —
maybe not the sole value but certainly the optimum value — of a PHR is to be
able to exchange information with an EHR, then you have to have an electronic
EHR, you have to have an EHR for that PHR to have that optimum value.

Also, another barrier: there’s a lack of effectiveness of evidence.
Physicians’ costs of change, patients’ acceptance. Much of the medical record
is jargon and unusual — I’m going to get back to that in a minute.

And then there are legal complexities because of the issues relating to
young people’s ability to control their own health information as they pass
through their teen years.

So one of these people, talking about information management as a concept
that needs to be dealt with behind both the EHRs and even PHRs, and the feeling
here on both the business case for information management is that there is no
evidence that the adoption of HIT without a concomitant business case for
population or disease management or care coordination would actually lead to
those quality enhancements and that you need it as a basis for pay for
performance incentives.

And also that EHR adoption without reimbursement changes that reward the
desired use won’t result in the goals laid out by Dr. Brailer but will just
digitize a dysfunctional system — like people used to say, I’m paving the cow
pass.

And then widespread PHR adoption would result in similar waste of the
potential.

We have looked at a variety of standards in our hearings, and among the
areas that we looked at, before the phrase “continuity of care
record” had even been heard, at least in EHR circles — it may have been
heard in Massachusetts in the paper-based system — but before there was a CCR,
the NHII workgroup had a hearing on minimum data sets for PHRs. And I’ll get
back to that in a little while.

We looked at issues of interoperability. We looked at issued of patient
control and privacy. Mostly that patient control and privacy in a more focused
way came out at hearings just in February in the Privacy Subcommittee which
some of you may have attended.

We did look at authentication standards and consumer terminologies.

Just very quickly in the minimum data set, I have a slide here that is old
and dated, and again, it’s pre-CCR, but it does outline a list of very specific
clinical data fields that would be considered minimal. And this person
described it as certainly easily under 50.

So, rethinking medical documentation, at our January hearing I believe it
was, we got into this discussion between Dr. Wiesenthal from Kaiser and Dr.
Peter Basch, again talking about the fact that the medical records as they
currently exist are bloated; there’s much more data in them than is needed.
There’s a misconception that it protects against errors and malpractice.

And sharing of these bloated text blobs, as this person said, with patients
via PHR both would, you know, cause the doctor some concern and it’s not
particularly useful.

On the other hand, if you could have a, you know, more problem-oriented
medical record that was more focused on documenting on what was necessary and
on improving quality and longitudinal care rather than the documentation of
episodic care and focused on share ability that perhaps this would be more
valuable.

And, of course, that sort of picks up on that concept of a minimal, or some
kind of a data set that you might look at.

We haven’t looked at consumer vocabularies in a while, but I know Steve
suggested that we get back there. Clearly, it’s important to have consumer
vocabularies so that you can translate from the professional to the consumer
things like clinical notes and discharge summaries and explanations of
benefits.

And then you also have to translate from the consumer to the professionals
for personal health records and on-line consultation.

And just a couple of examples.

The interface terminologies that would do, for example, take something like
diabetes mellitus with ophthalmic manifestations and translate it into diabetes
with eye problems.

But on the other hand, translate colloquialisms and common phrases into
medically valid concepts. A couple of consumer vocabularies that are out there
— WellMed has its own. And I believe we asked them at one point if they would
share it with us later and they said at some point they would, but we haven’t
gone back to try and ask them for it. So they have all 12,000 ICD-9 codes and
14,000 SNOMED codes.

Appelon, back in 2000 when they talked to us, it’s interesting they had
15,000 total terms; through an algorithm they were able to map 10,000; 4,000
took human intervention and 1,000 they just couldn’t map at all. These were
coming from, I think, both sides, that some were consumer oriented and some
were medically oriented that just literally had no equivalents.

So, big issue of ownership and control of the record. Certainly from the
provider point of view, the official medical record, you know, has very
specific functions of recording complaints. It’s a basis of payment. It’s a
defense against malpractice. And that unless we make a radical change in
reimbursement and liability, the use of the PHR cannot alter the physician’s
record or control of that record, at least for the purposes of payment and the
establishment of defense against malpractices.

So the implications — and this is from Peter Basch — is that the MDs will
always own and control their EHR as a formal document. But hopefully the
information within the EHRs is formatted to make data change easy, inexpensive
and accurate.

And that tethered — again — those PHRs that are directly provided by,
sponsored by, hosted by the provider and controlled by definition, they perhaps
may be owned and controlled by the MD, but even there there’s a little bit of a
maybe. But certainly for the docs, the provider’s point of view, they would say
so.

But the untethered PHRs, those that are totally free-standing, why, the
thought is that this would be by definition owned and controlled by the
patient, and at least this doctor testifier felt that that concept was okay.

Do we need anything new?

Well, clearly there’s the expectation that HIPAA

provides a floor. But in fact we heard also that there is no indication that
HIPAA does cover some of the kinds of health information flows from especially
the untethered PHRs because the hosts are not covered entities in many
instances. So there’s a lot of issues about what HIPAA does and does not
support, permit, encourage in the PHR domain.

So, clearly standards for authorization and permission will become
increasingly important.

David Brailer spoke to a meeting of the National Cancer Institute, some
informatics initiative just a week ago I guess it was, and he said he was
trying to describe to lay people the importance of authorization and control.
And finally he said I don’t normally — I’m not an artist or a graphic — but I
went to the white board and I sketched something, you know; there was a river,
there was sort of an oared boat crossing the river, there was a man standing in
the prow with a tri-cornered hat so everybody recognizes it’s Washington
crossing the Delaware.

And up ahead he drew an enormous rock on which that boat was going to
founder. And he said that is authorization and control.

So, clearly it’s going to be a huge issue.

But if this is in the PHR space, why, there is a very strong feeling that
sensitive data is different for every patient and that they need to establish
item-by-item permissions in certain sensitive areas to be determined.

Audit trails are very important. So this means for those who are designing
PHR that they need to provide for, you know, the selective release of
information, the release to selected providers, providing for inconsistency and
error across sources, the mechanisms for both user correction and user
annotation of data by people who are observed.

And David sees his own words here, I’m sure — people will use the PHRs they
choose.

Many others have pointed out that education on the implications of
authorizing or withholding information is absolutely essential.

Again, in the privacy hearings in February, we heard that in many, many
instances, when educated about the value of sharing, people share. They just
need to know what the value is and they need to feel that they were given a
valid choice. So then the possibility of the multi-tiered approach.

And interoperability standards that did allow for source system
interdependence, modular approaches that would fit into multiple PHR models,
patient-centric solutions versus provider and care centric solutions — the
barriers, one of which is not technical at all: Are providers actually willing
to share data?

What about the way of linking patients to their information, which we
sometimes talk about, the master patient index and other issues like that.

And alignment among different, you know, vendor solutions, and the lack of
final steps.

So I’m getting to the end now, and I label this slide “What We’re Just
Beginning to Hear — Personal Health Information Banks.” This hasn’t been
a formal hearing issue on our agenda, but it’s sort of been percolating lately
behind some of the untethered PHRs and I think some of us I think are beginning
to hear some really major efforts to set up, you know, third party hosts that
may have authorization and access management as a distinct function that could
be totally separate from the hosting of the information.

And it does seem that the implicit business model varies. There’s gold in
them thar PHI. People are viewing, are seeing the value of de-identified PHI
for secondary use for population health and quality. And some of the models are
even considering possibility of reimbursement to patients for a consent to
share which, you know, has issues in and of itself. But these personal health
information banks are, I would say, in the year 2005, are the latest, are the
newest new thing.

Just a few recommendations that seemed to come out. Clearly, there were many
more, some more specific.

Obviously, standards for common data fields stored and shared between PHRs
and EHRs.

Support standards and incentives for sharing, for the actual sharing as
opposed to just the capacity to share.

Supporting the creation of best practices for authorization, control and
security.

And supporting PHRs for government and CMS as a way to sort of jump-start
it.

And that’s the end.

DR. COHN: Mary Jo, thank you. I think if I’d realized how quickly you were
going to go, we would have only given you 20 minutes. That was certainly a
quick run-through.

But I guess I want to sort of open it up for questions and comments.

I guess I was sort of struck as you were talking that basically how much of
the information that you presented actually was not done at PHR hearings.

You, for example, were talking about hearings that I can remember back from
the year 2000 that related to interface terminologies — it’s just like a long
time ago — done by a completely different workgroup of which I have no idea
what any sort of update or even if those are issues or even if the companies
are still in existence. I mean, one of them I know, but I have no idea about
the other.

I was also sort of interested in how the collage included recent privacy
hearings and all of this stuff.

MS. DEERING: I think we are a continuum. I think the only things that you
saw in my slides that did not come specifically from my hearing were one or two
comments about privacy. But everything else really came from our hearings.

So it shows how we’re all part of the same soup, perhaps, of information.
And this was not necessarily invented at the time of any of our hearings.

DR. COHN: Exactly. Do people have questions, comments? Paul?

DR. TANG: Thanks for a lovely summary, Mary Jo,.

The last slide says some recommendations. Those are recommendations from
whom?

MS. DEERING: And again in the spirit of full disclosure, they represent both
some very specific statements that were made with, in a couple of cases, maybe
a modest tweak by me either for language or because I was trying to incorporate
some other things that came out.

I think a very useful exercise would be for someone to go through and very
specifically look for recommendations.

Now, some of the recommendations didn’t come out quite as crisply and
formally that would make your job very easy because we would have give and take
with the testifiers, and so a lot of it would come out there, and so you really
need to go back and, I think, dig through the transcripts.

DR. COHN: Did that answer your question, Paul?

DR. TANG: Yes, it did. Just for the record, it seems like it would be
helpful to indicate that this is sort of an abstract of some suggested
recommendations from testifiers versus from the Committee, or Workgroup, that’s
all.

MS. DEERING: Oh, okay. I should probably — my disclaimer at the front was
to say that certainly they were not Committee recommendations, right. Steve
should have an institutional memory here. Cynthia probably has an — and
Michelle — we’ve got three people here who were present at the creation, so —
staffers.

MR. STEINDEL: I think that put me in a position to make a comment, Mary Jo.
And, yes, I do have an institutional memory.

I think part of my institutional memory was when I looked at your meeting
dates slide, I said: Is the Chicago meeting up there? Wasn’t it before 2002? It
seems like we’ve been looking at this forever.

But then you put it in position, and, yes, it was 2002.

And we’ve been formally looking at PHRs now for a while, since we finished
the NHII report in 2001 and decided to take on a specific task.

I think what I was impressed with by the presentation was the wealth of
material that we’ve had presented to us. And your demonstration of the
two-inch-thick material I think lends credence to that.

And I think one thing that would be very important for us to do as a
workgroup is to bring that wealth of material together into some type of
synthesis and put it out there as “this is what the status of PHRs are at
this point in time,” because I think, as you pointed out with the evolving
discussion right now on whatever we want to call the personal health record —
bank-to-consumer, health record bank, or whatever that has started to appear,
it’s very important to get this collective knowledge together and influence
that discussion.

DR. COHN: Yes, Bob Hungate?

MR. HUNGATE: Oh, one other question that occurs to me — you’ve listed
attributes of a patient-centric personal health record. I don’t see
specifically called out there, and perhaps it’s not been suggested anyplace,
anything about, oh, health status — quality of life measures.

It seems to me that there are some tools that have existed that might find a
home in a patient personal health record where they’ve had trouble finding a
home in an electronic record.

And I wondered if that in any case surfaced in the discussion.

MS. DEERING: Well, you know it’s in our original circles. I mean, it’s been
there from the beginning.

So I think you’re absolutely right to remind us of it, and it has been part
of the NHII workgroups’ concept from the start.

And I only wanted to add, Steve, is that actually the first report on this
came in 1998 and it included a very detailed list of the contents of the
personal health record. Jeff, you probably remember that because we really
looked at the list. We went through the exercise of looking at the list of data
elements and then we sort of parsed it.

MR. STEINDEL: Mary Jo — thank you, because I thought we did something
around then.

MS. DEERING: Yes, way back in ’98. So we’ve been looking at personal health
records since early 1998.

DR. COHN: Jeff?

MR. BLAIR: One of the areas that — by the way, Jack, thanks for pulling
that together; that was helpful — and, you know, maybe one of the things that
if you covered —

[Mr. Blair is asked to speak into the microphone.]

MR. BLAIR: Do I need to speak closer?

DR. COHN: Yes.

MR. BLAIR: Okay. One of the things that you covered is an area that we have
probed at repeatedly, and I feel as if at least my understanding of the
landscape is still murky and I’m nervous about it.

We have all of these different initiatives that people are referring to as
personal health records, and you touched on that, and there’s a new one that’s
going to be announced shortly which looks like it’s going to have a lot of
marketing support and a business model which I think is interesting because
it’ll offer the services free to the consumer, or patient, but it doesn’t
indicate who’s going to pay for it, and I’m a little nervous about the business
model. We’ll have to see how that comes forth.

But that nervousness I think is something where I’m groping here and I’m a
little bit worried that this becomes an area that might be exploited.

And I feel as if the more flesh we could put on the bones of the different
options with the plus and minuses of the different models so that a marketing
effort does not capture this even though that particular information model may
not be the best for the nation or the best for the patients or the best for the
community.

And maybe that’s what I’m getting at here, is I think we ought to have some
type of an analysis of all of the different models, including the one that’s
about to be announced this next week, with advantages and disadvantages for the
patient, advantages and disadvantages for the care giver, advantages and
disadvantages to public health, so that we could be looking at this a little
bit more objectively for the nation as a whole and not allow a major marketing
effort to distort what the real value is.

MS. DEERING: Maybe I will just jump in and say that, as you say,
increasingly this concept of information banking and the value of data, I think
that that is going to be explosive and people have truly seen from the
commercial side the value of Mary Jo Deering’s personal health information,
preferably de-identified, and so I think it does become all the more urgent to
look at that.

But even those that are not necessarily based on that model of selling
personal health information would still have those risks and benefits that
would need to be mapped.

MR. BLAIR: Yes, you’re touching on the point that is making me nervous,
exactly, is that I almost feel as if there’s certain principles here, because
we’ve considered it when we looked at HIPAA for the privacy regs, and that was
with respect to the covered entities.

But this is an area that some people are looking at as not a covered entity,
and I’m very much afraid that the privacy and security requirements are being
circumvented by some of the models.

MR. HOUSTON: Could I make a comment here?

MR. BLAIR: Yes.

MR. HOUSTON: I think that — you know, as Mary Jo said and I think you
implied just now, that the privacy rule does not apply here.

And I think that this is going to be very much consumer driven, and so we
can weigh in on the different models of what we think is good and bad, but
ultimately this is a consumer choice issue and the consumers are going to look
at, you know, the non-profit that might be putting together these initiatives,
but they also might be looking at the various vendors and people doing it on a
for-profit motive and deciding on a case-by-case basis whether they value the
privacy of their record and the protections that those organizations will put
in place against the functionalities that those various organizations are
willing to provide.

And the profit motive might be that, you know, the feature-rich PHRs are
going to win out because, you know, there’s the features on functionality and
the things that will be made available as incentives for these people to use
them.

DR. COHN: People are nodding their heads, John Paul, without making any
comment. I think Paul Tang wants to comment or jump in on this one, though.

DR. TANG: Yes, I really do share Jeff’s nervousness about this.

While understanding, of course, the value of having information and sharing
it with appropriate folks and the ability of an individual to consent to other
uses, I think we need to clearly educate the consumer on some of the other uses
and the implications.

So, for example, there is a well known ad company who on their website shows
their evidence that I think it’s two-thirds of consumers would give up their
privacy for an entry in a sweepstakes. And that’s not necessarily the kind of
thing we want to be taken advantage of.

So while it is their right to give up their privacy for something else, I’m
nervous about the financial incentive to do so, particularly when there is
either commercial interest or there are other implications that not everyone in
the public would grasp at the moment that they’re agreeing to that use.

MR. BLAIR: And let me add one other little piece on this.

And, John Paul, just because an entity is a non-profit entity does not mean
that it necessarily is going to protect the privacy of the patient more than a
profit-making organization.

MR. HOUSTON: I don’t doubt that, and that was probably an
over-generalization. I agree with you.

As we see with supermarkets today, you know, I noticed at least in my area,
you know, you use the Advantage card and you get all sorts of discounts on
everything you buy in the supermarket.

And obviously there’s a balance there, and you sort of give up certain
rights, though, too, insofar as they start to use their data for marketing and
for a variety of other purposes.

It’s not to say that there aren’t going to be organizations that are going
to provide very strong incentives to patients and a feature rich PHR in
exchange for a certain data use, and I think a lot of patients may say, hey, if
it’s going to save me some dollars and improve my care, I’m willing to consider
the privacy implications, though that is a very personal decision.

MR. BLAIR: I’m nodding my head yes.

DR. COHN: Yes. John Paul, you could imagine them throwing in broadband
access as part of the package.

MR. HOUSTON: That, or reduced cost on prescriptions. I’m not sure of the
legality of that, whether there are any preclusions in that regard, but I think
those are considerations.

DR. COHN: Yes.

MR. HOUSTON: You know, it’s awfully consumer driven, and I think the best I
think we can do is — because I don’t think we can have Federal legislation
regarding privacy in this regard — but I think we can try to push hard for
industry, you know, standard privacy statements and things that are very much
driven to allow the consumer just to fully understand his or her right.

MR. BLAIR: John Paul, you’re kind of focusing — maybe my essence of my
concern is because, yes, I very much agree that it should be market driven and
the value should be there and I have no problem at all with the fact that a
consumer would wind up saying, “This has greater value to me; I’m willing
to pay a little bit on a subscription basis for this.”

So being for free is not necessarily the answer. I mean, in some cases it’s
wonderful if it’s, you know, free and it’s a public service.

The piece that maybe I’ve started to notice that makes me concerned is this
manner of things being for free and not disclosing where the funding is coming
from and what’s happening with that data, because that data can be a source of
revenue, and if there’s not full or complete disclosure on these things because
it is not within the covered entities, it could do great damage to a lot of the
things we’re trying to achieve because we have to have public trust in this
area of electronic health records and personal health records and e-prescribing
to get all of the other benefits.

MR. HOUSTON: I personally don’t doubt that.

I think that the thought that was of what type of controls can we
practically and reasonably expect to be able to put in place in this type of an
environment and are they mandatory or are they, you know — or should we be
looking towards, you know, asserting pressure in order to get these
organizations to live by instead of non-mandatory standards that we might
recommend?

MR. BLAIR: The only thing I was thinking of — I don’t care for mandates at
all — the only thing I’m thinking of is that maybe there should be some
expectation for full disclosure of where the revenue comes in these different
models.

MR. HOUSTON: I agree with that.

DR. COHN: Yes. I think Mary Jo had a comment, and then Paul had a comment.

MS. DEERING: One of the interesting things about the privacy hearings is
that they began with a sort of a sociological view of attitudes toward privacy.
But this was back in February when some of the data releases were just barely
coming through.

And I think it would be very interesting for someone to do a very careful
probing of people’s attitudes toward privacy that one hand there was sort of a
secular trend, so to speak, toward greater and greater acceptance of the fact
that my information is all over the place, I’m used to trading it for value, as
long as I know, you know.

Overall, we know people know more about us and with each passing day they
know more about us, and so I say it’s sort of a secular trend whether we like
it or not, that it’s sort of moving us that way and eroding our concerns and
our barriers to wanting to share information.

But on the other hand, then you have these major, major media stories about
data theft. And it would be interesting to know what people’s tradeoff is and
whether that has made them, you know, more concerned.

The one thing that came out again in the privacy hearing, and actually it
came out in ours as well, that perhaps one of the things that is needed is for
us to

tighten the sanctions and penalties for abuse and for the misuse of personal
health information and identity theft in the health field as opposed to trying
to regulate exactly, you know, from a procedural point of view, exactly what
you’re going to do with it.

Just set what the laws are in terms of the levels of protection and then
prosecute the heck out of people like you would for murder or kidnapping or
something else I think was the analogy that got a little bit carried away. But
anyway, that was one thought that came along, too.

DR. COHN: Paul?

DR. TANG: The scary scenario that I’m worried about is if someone were to
offer the ability do electronic prescribing in return for use of their data,
you could easily imagine how that could be, and then the alternative is, well,
your prescription could just go on paper.

And it seems like there’s policy implications for ventures that do that.

With regard to your bit about having more uniform protection, I think that
probably is a key because of the HIPAA loophole in the sense of third parties
whether they’re profit or non-profit are not covered by HIPAA. In other words,
consumers, patients do not have any recourse of the type that you described.

I think that’s a real concern.

DR. COHN: Gene?

MR. STEUERLE: I guess I’m trying to think of where this leads us sort of in
a functional sense. [He is urged to speak closer to the microphone.] I’m a
little concerned as to where all this leads us in terms of sort of in a
functional sense of what decisions can we influence and should we be
influencing that.

I certainly agree with Jeff’s suggestion that information be provided on
any use of the data.

But I guess my concern, and it has been there for some time, is that if I
can label the world as having Type 1 and Type 2 errors here, Type 1 error being
that we’re not doing a lot of things because of privacy concerns, and B, we do
do things and some privacy rights are violated, I think we’re way on the side
of having a lot of Type 1 errors and the complication is no matter what we do,
I don’t think you ever eliminate the Type 2.

And in a world where the press and the media play so much of it, I don’t
know whether people who are holding back from doing things, whether they’re
doctors or vendors or pharmacists or other people, often they don’t know the
difference between 1 out of a 10 chance of having privacy violated versus 1 out
of 1,000 versus 1 out of 100,000 because if it gets the headlines, it gets the
headlines, and we don’t really rank the cost of these privacy concerns by their
sort of probability of occurring.

And anecdotally saying that privacy might be violated isn’t enough. So it
seems to me, again trying to think functionally what this means is that I think
we need to ratchet ahead with our development of EHRs and PHRs to the extent we
can facilitate this.

I’m mainly concerned because of the Type 1 errors being the bigger problem,
but constantly being alert the way Jeff has warned us to any place we can step
in to sort of warn our limit or at least provide information, I think it’s
enormously helpful.

And actually, one of the great things about PHRs is, in some sense, because
the individual is the one initiating the effort as opposed to things like EHRs,
is in some ways it provides some relief. I mean, the individual can go off
ahead and charge ahead because an individual automatically by buying something
or doing something is sort of making a tradeoff that’s going to be very hard
for the rest of us to do on behalf of others, or we’re sort of afraid of law
suits or anything else.

Maybe I’m being a little vague here. I’m just concerned we don’t
over-emphasize the privacy concerns but just be alert to them.

DR. COHN: Okay. Yes, and I guess on this piece, we’re surely not coming to a
conclusion on privacy. This is a conversation where we have bullets that we can
reflect on. I suspect that as we talk tomorrow, this may be a focus where we
try to drill in a little more in our next set of hearings about what we can do
as well as what we should recommend in all this area, though I think there’s
been a lot of very valuable bullets that we’re already beginning to see as well
as I think pros and cons on these various things.

I think it’s a difficult area. I think some people recognize it’s sort of a
loophole. It’s not really a loophole because these are obviously non-covered
providers, and whether they’re providers or not is arguable; they’re obviously
non-covered entities.

But exactly what the implications are and what remedies or what suggestions
we may have on that I think is to be determined.

Now, trying to keep everybody actually on schedule, Mary Jo, thank you very
much because I think you’ve gotten the conversation going very well, and I
think we have some bullets to sort of play with here.

I think the time was now to take about a 15-minute break and then we’ll come
together for our first formal panel, which is really this update on things that
we’ve heard before that include — I know David Lansky, Cynthia Baur and Linda
Fischetti.

So, take a 15-minute break.

[Break from 10:02 A.M. to 10:25 A.M.]

DR. COHN: The next panel is basically an update on developments relating to
personal health records, and we have Cynthia Baur from OPHS; David Lansky from
Markle Foundation, and Linda Fischetti from VA and I guess also HL7, primarily
from VA, sort of, I think, talking about sort of status since our last
conversations.

So, Cynthia, I think you’re on first, please.

AGENDA ITEM: Presentation — CYNTHIA
BAUR

MS. BAUR: Thank you, Simon.

As Simon said, I’m here to provide an update on a report that you heard a
briefing on by David Lansky at the January hearings.

And I am going to talk briefly about, I guess, sort of the highlights of the
report. The report is not currently available; we have received the final draft
from the project team and it is under internal review at the moment.

So what I’m talking about is still a final draft, not the final version
that we’ve signed off on yet from the Office.

The slides contain essentially the highlights of the Executive Summary, so
you will be hearing about all the major components of the report, and I think
in light of the previous discussion could be very helpful to the Committee in
terms of thinking about the kind of advice you might want to provide to the
Secretary of the Department at the end of the year because I think the project
team identified some very provocative questions about how HHS and by extension
DOD and VA might think about moving forward on this space.

Again, just to go through the background of the report, the report was
commissioned by our office, the Office of Disease Prevention and Health
Promotion, which is part of the Office of the Secretary, similar to other OS
offices that are represented here.

Our job is to foster coordination and collaboration in disease prevention,
health promotion, and as I indicated at the January hearing, our motivation for
commissioning this report was to think about PHRs as tools for prevention and
for a closer engagement with consumers and patients on promoting healthy
behaviors, personal health management and some more concepts.

The project team was composed of David Lansky, Susan Kanaan and Josh
Lemieux. When the project began, it was under the auspices of FACCT, and then
it was finished after FACCT had already closed its operations at the end of
December.

The purpose of the report was to provide our

office as well as other HHS offices and agencies who are interested in this
areas insights and analysis on PHRs and what the possible government roles,
responsibilities, opportunities and limitations might be.

As I said, our office was particularly interested in thinking about how to
move forward either in terms of our own project development or in terms of
fostering coordination and collaboration around PHRs for prevention.

The sources for the report were 15 interviews with key informants, which
were 13 Federal staff and five non-Federal experts. They also drew on the
hearings that Mary Jo so ably summarized for us, the Connecting for Health
reports and meetings since the project team had been involved with that in the
past as well as the project team expertise.

I think the sources indicate that this was not intended to be sort of a
definitive statement or a final statement about what the government role might
be but a very informed and expert point of view on what the possible government
role may be.

So I believe David had talked about this in his January presentation, so I
won’t spend a lot of time on this, but just to recap, these are the Federal
roles that the project team identified as related to the PHR, and to point out
that these are existing roles that the agencies

already have or the Department as a whole has. These do not represent new
roles, but these are the roles that become relevant in light of thinking about
PHRs.

And when you think about then, how do you connect PHRs with these roles,
there are sort of three ways in which that can play out.

One is that it can extend any of these existing roles. So, for example,
there’s been a lot of talk about what CMS’s role as a payer might be, and so
how does a PHR extend what its current role as a payer is?

How does it help, for example, CMS think about new ways of achieving its
existing goals or new goals that it might want to set for itself or any of the
other agencies?

I’m just using CMS as an example.

Or, I think a bit more provocatively, and I am going to spend probably quite
a bit of my time talking about this because I think it is in many ways the most
interesting but the most difficult part for government agencies, is: How can
the government challenge itself and think about PHRs in its existing roles for
transformative purposes? And so we’ll come back to that theme.

Just to recap, you can either extend the existing role, you can focus on
existing or new goals, or you can really think about the transformative power
in terms of your operations.

This consensus on what the Federal roles might be comes from the 15
interviews that I referenced as one of the sources for this report.

And throughout the slides, I tried to be careful in indicating what was the
source of information in each case because in many cases I think it is
important to distinguish between what the interviewees thought the Federal role
might be, what the project team thought, or what has been gleaned from, say,
the combination of the hearings and the Connecting for Health reports which
represents a very broad cross-section of expert opinion that’s been involved in
these different efforts.

So this consensus on roles really represents the 15 interviewees’ points of
view as well as, I believe, the expert, the project team, point of view, is
that there is definitely a role for the Federal government in promoting
standardization, in working on the development of standards, and as the bullet
says here, facilitating standards-based approaches in general.

And probably Steve and some other people can speak more knowledgeably about
this than I can, but when I first got involved with this workgroup about six
years ago, it seemed to me that at that point that there was this impression
that government staff were not as involved as they could have been or should
have been in standards activities and that that has really changed quite
dramatically in the last five to six years.

And I think that’s sort of a role that people feel very comfortable with
right now. I mean, the government is involved, they are very collaborative, and
that there’s been a lot of movement in standards.

So that doesn’t necessarily represent any kind of as a breakthrough, but
it’s been somewhat evolutionary and people feel very comfortable with that
involvement.

The second thing, and I think again this represents sort of a little bit of
a different way of thinking about this is there is consensus about the
government participating in experimentation or leading experimentation in terms
of PHR models, that the government might have a role in encouraging,
coordinating, disseminating findings on experiments.

And I think that actually is a point that deserves some attention because my
experience is that experimentation is not always easy in a government
environment. There are lots of disincentives that do not necessarily facilitate
experimentation.

And so I do think that’s a somewhat provocative finding, and it’s
interesting that that would emerge as a consensus point from this largely
Federal, you know, pool of experts.

Again, from the interviews, these were the four broad contributions that
the interviewees thought the government involvement could bring to work on
PHRS.

This first point about visioning I think picks up on what I had said about
the roles that the agencies already have, this idea that visioning may lead you
to think about the transformative power of PHR. And visioning is not something,
at least in my experience, that agencies regularly or sometimes all that
successfully engage in.

I had talked to David about this point and he said that they were picking
up signs that some of the agencies had started doing some of this visioning
work about what PHRs might represent to their different missions but that it
was not uniform in that every agency was doing it and it certainly wasn’t sort
of fully realized yet.

In terms of the standards, the interviewees felt that, as I said, that the
government had been, you know, relatively successful with efforts like
consolidated health informatics with their support of LOINC and SNOMED and that
there were still opportunity to continue to support the mapping of VHRs and
PHRs in relationship to each other, and so there was the sense that that was
still a very important area for government staff to contribute to.

This third point about the legal and regulatory environment, we’ve already
discussed quite a bit this morning what some of the privacy issues might be. At
least from my initial reading of the report, there’s still the sense that
there’s a lot of work that could be done internally in terms of defining what
the privacy issues might be and not just in terms of Federal laws and
regulations but also state, to think about sort of the broad spectrum of
privacy and security issues and to, you know, be mindful of what this Committee
itself has already said in that area.

And finally, back to this point again about experimentation, that the
agencies can make a contribution in terms of conducting and supporting
research, in terms of educating the user base, which again I find sort of an
interesting finding because I would say more programs than not are not
necessarily directed to consumers and patients as the end user, so I think
that’s kind of an interesting idea to think about — what mechanisms the
government might need to actually engage in an educational effort to reach the
user base.

Another point under experimentation and facilitation would be to think
about the kinds of incentives that could be offered for participation — again,
not in isolation but in collaboration with the private sector.

Yet again, the theme of enhancing privacy and security showed up under this
bullet of experimentation and facilitation.

So I think these contributions then suggested some challenges that have to
be addressed in order for I think those contributions to be realized.

I sort of feel a little strange talking about this report in front of the
author because I feel like he’s going to jump in any minute and say, “No,
no — that’s not what we meant!” so I’m trying to be sort of as faithful
as possible to the report itself.

But these critical challenges then were really the project team’s analysis
of what they heard from the interviewees, what they have learned from the
Connecting for Health work, and the hearings.

And I think what is really is in there are five critical challenges that
were identified by the project team. And as you will see, three of them are on
this slide and two of them use the word “vision” and the third one
uses the word “stance,” which in some ways has an element, you know,
can be interpreted as requiring an element of visioning.

But I think it’s very interesting that the project team used that idea of
visioning as being important to what the government role and contribution could
be but as well what the challenge is because I think they are right, that if
visioning is what’s needed and if visioning is what’s going to happen, it is a
challenge because to my knowledge there aren’t good mechanisms to facilitate
that visioning process.

So the first critical challenge then is: What vision of health care and
health system reform will inform the government’s involvement with PHRs?

And I think that’s actually, you know, a fairly large challenge to think
about, articulating what that vision might be, because it’s not just asking for
a vision of PHRs; it’s asking for a vision of what kind of system we want to
come into being and how that PHR informs that. So, I mean, it is a very large
challenge, I think, to have it framed that way.

Because then you have to think about what are the policy goals? You have to
be able to articulate what those policy goals are, and you have to be able to
connect the vision to the policy goals.

You have to look at issues around consumer involvement and quality and costs
and the report points out that, you know, rather than thinking about the early
adoption data as indicating a lack of interest, that it suggests that there’s a
lot of, you know, hard thinking that needs to be done about the incentives and
the expected outcomes.

What happens if we, you know, sort of peek out at, you know, 30 percent
adoption rate? Is that okay if we reach the right 30 percent?

So it goes to how have you defined who it is you need to reach and what are
the outcomes from having reached that particular segment.

The second element of visioning suggested here has to do with consumer
empowerment and translating this idea of empowerment into actual policies and
programs.

I think the report, I mean by raising it as a question, I think it sort of
subtly suggests that consumer empowerment as a rhetorical strategy is probably
insufficient. It says that the idea of consumer empowerment actually has to
show up in terms of the policies and procedures that the government decides to
pursue in this area.

If PHRs are really a gateway or a contribution to this concept of personal
health management, we also then have to think about: What do we do with this
concept that is itself very undefined? I mean, how clear are we in terms of
what we want personal health management as an approach to accomplish? And so
then how does PHR connect to personal health management as a policy goal?

I think that this point raises the question of how much consumer research
might we actually have to invest in ourselves or partner with in terms of the
private sector to make sure that we really understand what’s involved in
consumer empowerment and personal health management, because I think that
developing what would be characterized as a consumer control strategy would
require us knowing a lot more than we do today about who the end users are.

This third point about the government stance towards the possible uses of
PHR — the project team raised the question of how an agency then, I mean, what
is the agency stance going to be and how much credibility does it actually have
when you’re talking about getting involved in an area that involves a lot of
not just personal information but personally identifiable information, and
there’s an important distinction I think to be made there, because this is an
area in which, you know, the government doesn’t have necessarily much history
to draw on, much experience. There are a lot of questions about how the
government might work with third parties in this area.

So I think that the report does a good job then in raising these questions
about PHRs, if they’re not a unitary item; they maybe play out differently in
terms of these roles, and it raises a lot of different questions then about how
each agency would use PHRs vis-à-vis its role and then the personal
health information implications from that.

The fourth critical challenge relates to thinking about PHRs as providing
population-wide health benefits.

There are basic issues of access that have been raised in terms of access to
technology, access to technical support, access to the kind of health
information supports that are not necessarily technology driven but I’ve raised
with the Committee before, this concept of health literacy that we try and
connect into technology use.

And around meeting the needs of the diverse user groups — because if PHRs
are not a unitary thing, neither are user groups. And this concept of diversity
— how do you account for different factors of diversity? How do they play out
in terms of technology use? And what actually could be the government’s role in
thinking about different models of not just the technology itself but of the
consumer groups and the marketing strategies that would be required to reach
them and provide adequate support.

The report also makes the point that low-income users are unlikely to be
reached if the government doesn’t take an active role in this area.

And finally, the last critical challenge that the project team identified is
related to this issue of coordination and how do we strengthen and enhance
coordination and how do we assess the kind of progress that’s been made as a
result of Federal action in this area.

The coordination has to happen not only internally, according to the report,
but with the private sector, and we have to think about links to other Federal
priorities.

And one thing that the report doesn’t mention but again is a part of the
larger context for thinking about this is the President’s E-Government
initiative, because there are many things that are happening as part of the
broader e-government strategy that would affect how PHRs and this visioning
strategy for using PHRs would play out.

The project team has some recommended next steps that I will go through
briefly because I think in many ways these are probably the most
self-explanatory part of the slides.

One is that funding for the National Coordinator’s office needs to be
enhanced to carry out the necessary coordination that’s been identified in
PHRs.

I’ve talked about several points in which we have mechanisms in process to
help clarify the objectives and identify different approaches to the challenges
that were identified by the project team.

That we need new mechanisms and resources for coordination in this area.

That we need a way to assign responsibilities and specify metrics to
evaluate progress, and that this needs to be done in the context of a
public-private collaboration focusing on issues of interoperability, privacy,
reimbursement, pricing, patient access and control, which were issues that were
discussed this morning.

So I just want to make a couple of remarks before I close because I had said
that our office had been particularly interested in PHRs as a tool for
prevention.

And I want to return to this idea that articulating what we mean by personal
health management in light of what this report says I think becomes something
the Committee might want to think about raising with the Department is that we
do have a Healthy People 2010 objective on Internet access. It’s to increase
Internet access in the home.

It is an objective that has not received much attention or funding
internally and it’s something that we haven’t really had much staff to
coordinate externally with, which is where a lot of the activity has been.

But when you think about this focus on personal responsibility, behavior and
consumer cost-sharing, then you really have to start dealing very directly with
questions of access and do you have the appropriate tools to use with the
different user groups you’re trying to reach?

As I indicated, personal health management right now is an underdeveloped
concept that requires research to find out how it’s going to play out with
these different user groups.

We know from other research that consumer capacities to follow prevention
recommendations that engage in this personal health management that we want to
happen is going to vary across the population, similar to other factors like
income, education and health status.

We’re interested in it. We think that PHRs could help make visible many of
the sort of invisible aspects of prevention, and we think that that in and of
itself deserves some attention because it may be that from a system
perspective, PHRs may have, you know, strong value in terms of costs and
quality, but from an end user perspective, there may be things that actually
more directly affect the person’s health that could be used as a way to kind of
leverage interest and participation, that prevention could be a point of entry
with consumers that hasn’t been fully explored.

And finally, again back to this point of coordination, is that if each of
the agencies are pursuing their own approach to PHRs, that we may end up
creating a wide number of choices for consumers but we may actually end up
fragmenting users’ data and confusing users. So if you have a tool that’s
designed for prevention, a tool that’s designed for chronic disease management,
a tool that’s designed for interfacing with, you know, the clinical system,
while it may be all very well-intentioned, if there’s not some sort of umbrella
idea — again back to this role of visioning — if there’s not some umbrella
idea about what the overall contribution is supposed to be and how each agency
makes its contribution, we could end up actually contributing to a
fragmentation and further confusion.

So I think here are the core messages that I took away from the report — is
that there are several critical contributions that the government can make. The
particularly unique contributions relate to visioning and strategies and
focusing on those who themselves would not come in contact with these
technologies otherwise. And that there’s a strong need for coordination and a
systematic approach to identifying which users will benefit most and how the
technology can be used most appropriately.

Thank you. That’s the end of my presentation.

DR. COHN: David, thank you for joining us. John Paul, can you hear us now?

MR. HOUSTON: You dropped out for about 30 seconds. I can hear you again now.

DR. COHN: Okay. David, do you want to speak into the microphone to make sure
that John Paul —

MR. LANSKY: Sure. This is David Lansky.

MR. HOUSTON: I heard that. Thank you.

MR. LANSKY: Good. All right.

AGENDA ITEM: Presentation — DAVID
LANSKY

MR. LANSKY: Well, first let me thank the Committee for allowing me to join
you again and your interest in tracking what Connecting for Health and Markle
is doing, and I specifically want to thank Cynthia and before her, Mary Jo, for
having invited FACCT and us to do some work on the report that Cynthia just
summarized for you.

It was very valuable for us to have a chance to listen to what people in the
government are doing in this arena and I think it certainly contributed to our
understanding of this field as a very important sector. I’m looking forward to
the discussion about that later.

But the second part of this panel, we were asked to talk a little bit about
what the Connecting for Health work is doing now.

I’ve had the chance to update you in the past about our previous two work
groups in this arena, and I want to give you just a very brief sense of where
we’re going from here.

I’ll just remind you — those who haven’t been familiar with Connecting for
Health, it’s a national consortium, or collaborative, of many organizations,
about 80 organizations now working together and with this broader objective of
catalyzing changes on a national basis to create an interconnected electronic
health information infrastructure to support better health and health care.

And those of you who have been close to Connecting for Health know that it’s
always been one of our agendas to undertake the interoperability work with a
particular view toward engaging patients, families and consumers in their own
health care, much as Cynthia said in her closing comments.

Connecting for Health’s emphasis is not interoperability for
interoperability’s sake, but interoperability as a platform that permits people
to be engaged in health care in a new way. So the PHR work has always been the
ultimate destination of Connecting for Health, but the interoperability is a
very substantial way station along the way.

Those of you who’ve been close to it have known that Connecting for Health
now has at least 80 or so organizations on a steering group and another several
dozen organizations in various capacities on the work groups. Robert Wood
Johnson Foundation and the Markle Foundation are jointly sponsoring the work of
Connecting for Health.

I won’t talk about the larger agenda of Connecting for Health, just
specifically where we are in the personal health record and related topics.

Just to remind you, we’ve had two cycles of work in personal health records.
The first was mostly in 2002-2003 to develop some broad ideas. They’re not
really definitional as much as descriptive and categorizing the work in
personal health records, and I’m very pleased that Linda is going to taking our
work further in the next part of our panel this morning. I think it’s evolved
very considerably in thinking about what is a personal health record and how do
we think about it.

And we did some work early on in terms of public opinion surveys of what did
people say they wanted from a personal health record and you’ve all seen that
work, I think.

A year ago, we did a second phase of work which was to think about
organizing the models and the policy structure which PHRs call to mind, and
this morning we’ve already had a good discussion here of some of the policy
implications of the growth of personal health records.

We also did a detailed functions list of personal health records, and we
began to think about another question Cynthia raised: How does the public come
to care about the opportunity to use personal health records?

And we tested a number of messages. Some of you recall some test mock
advertisements, for example, of a person falling off a ladder and suddenly
being on their way to the emergency room and whether that would be a good
message to engage people’s interest in PHR — which it turned out to be.

So that was the last couple years of work.

At this point, we’re asking, I guess, an evolutionary set of questions. As
we begin to see in the commercial marketplace and in the government-sponsored
organizations the emergence of a fair number of users of personal health
records, the question is: Where does this take us? And I think it goes back to
the transformational and vision questions Cynthia just keyed up.

Do we begin to have a way to envision a transformation of the health care
system by virtue of increased consumer participation?

As more people have more access to and control over their information, does
that change the way they engage in their own health and the way they affect the
health care system?

What happens as clinicians and patients and families can actually
communicate with each other continuously electronically with documentation and
support and access the full international web of resources?

We envision the opportunity to create an environment which enhances public
safety, increases continuity of care, and earns the public’s trust. And as you
already discussed this morning, this will be a key theme of what I’ll talk
about.

What Markle and Connecting for Health have done this last few months is
transform our own work from being about personal health records to being about
a personal health technology initiative, and I’ll give you a brief window into
that.

Essentially, we’re asking ourselves: The personal health record, as a set of
documentation about medical care or personal health, is one important platform;
but upon that platform, it’s possible to apply a variety of other technologies
and a number of policy questions will emerge by doing so.

So what I want to do with you today is update you on this Personal Health
Technologies Council, talk a little bit about our conference we have coming up,
the demonstration projects we’re doing, and what we’re doing in monitoring the
environment.

So we formed a new Council which had its first meeting about a month ago.
The intention of this Council – – so we’re not calling it a Personal Health
Record Council; we’re calling it a Personal Health Technologies Council — we
are wanting to look at a variety of consumer use of health technology of which
the PHR and PHR systems is one subset and ask about: What are the policy
questions which increased consumer use of health information and health
technology raise?

Essentially, the premise is that our policy structure has been built in the
last 75 years or so around a particular model of medical care and financing. As
those models are now beginning to be changed, or potentially altered, what do
we need to think about in terms of altering the policy environment? And even
your discussion this morning is a good example of that.

So we’d like to anticipate issues that will emerge as personal health
technologies become more widely available.

So we see PHR as a subset of the larger category of personal health
technologies.

We’d like to identify policies that will lower barriers and create
accelerators to the successful use of these technologies, and we’d like to use
this new Council to provide some guidance to our own work in PHR and related
topics.

Certainly in the discussion I can tell you more about where I see that
Council going, but it’s a new vehicle to discuss some of these issues in a
collaborative way.

The second thing to update you on is a conference that will be happening
here on November 10th which will be a personal health record conference that
Markle and Robert Wood Johnson — we’re discussing with Robert Wood Johnson
their role in it, but we hope they’ll be involved — to raise the overall
understanding, particularly in the policy community here in Washington, among
consumer advocates, among patient groups, among policy thinkers, about what
you’re all talking about here, about personal health records and what issues
are being raised, especially for consumer groups, to review and advocate for
some principles around the health information technology from the point of view
of patients and consumers.

We have worked with a number of consumer groups to draft a set of principles
that would reflect some of the concerns that patients and consumers probably
may have about this new technology and we’d like to see that document be given
more discussion and more visibility.

And then we’d like to use this conference to share emerging results from
research into personal health records and associated technologies.

The third thing I want to update you on is demonstration projects that
Connecting for Health is supporting.

There are two right now on the table. They’re both in a formative stage so I
don’t want to pretend to have a lot of detail about these but give you a sense
of where they’re going.

With NCI, we are discussing a project. NCI already has a project primarily
in the Bay area called caMATCH, which is an attempt to allow patients to enter
their own clinical information, have that be then electronically matched in an
algorithm against clinical trials which might be appropriate for those
patients, and then accelerate and trigger more intensive discussion of whether
that’s the right clinical trial for a particular patient.

Right now, as you know, there’s a low level of enrollment in clinical trials
by patients who might benefit from them and might contribute to them, and so
NCI has been looking at a variety of ways of encouraging people to know about
and have the opportunity to become enrolled in clinical trials.

Our contribution to this existing project would be to see whether an
interface to an electronic health record and coupled with the patient’s own
ability to enter their own information would increase the likelihood that

people will discover clinical trials that are of interest and relevant for
them.

So we’ll be working with electronic health record vendors to pre-populate
the existing matching algorithm and see if by coupling EHR data with
patient-supplied data, we can increase people’s access to clinical trials.

The second project we’re supporting this year is focused on the medication
list.

And essentially saying to the patient, just as you’re aware there are a
number of projects around the country to build a consolidated medication list
for the benefit of clinicians and emergency rooms and other sources of care,
our view is we can take that same infrastructure and give it to the patient in
effect so the patient can review their own medication list as it appears to be
available electronically, add information that’s not available from dispensing
— for example, what their actual practices are of taking medications, whether
they’re continuing or not continuing taking them as recommended, non-prescribed
medications they might be taking over the counters or other alternative sources
of medication, and basically begin to create a consolidated and accurate
medication list, coupling the electronic information with patient-supplied
information, and then seeing whether the access and use of that information
improves safety and quality.

We would like to do that in an area of the country where there’s already a
regional medication list being built and used, building upon national networks
such as RxHub.

Ultimately, then, the patient would be able to review the professionally
sourced data, be able to add their own data, apply decision support tools to
this new consolidated medication list to look at possible drug interactions and
other problems, and also share that with an emergency room if the need ever
arises.

That’s the second PHR demonstration project we’re interested in.

A third area that we’re doing some work in is standards, and we’ve heard a
lot this morning about standards already.

As Mary Jo’s summary this morning indicated, we are aware that there is not
adequate standardization in the data systems out there either on the data
supply by the patient or on the data represented back to the patient.

So we would like to participate in projects where that set of standards are
being developed.

The third category on this slide that I’ll just mention is the synthesis and
interpretation of data to the patient is a third area of potential
standardization as we tend to think a lot about a fairly static record and
encoding a data source as captured and is displayed.

In addition, we realize there may be a need to represented trended data, for
example, in a way which people can understand more uniformly when they see it.

What we’re doing in terms of Connecting for Health is we’re working with the
HL7 PHR working group. There is a small PHR working group right now within the
HL7 process and we are participating in that.

We’re supporting these demonstration projects I just mentioned and really
the focus of that is to look at this problem of translation.

And then within the Connecting for Health medisystem, as we look at
interoperability very broadly, we are trying to encourage everybody working in
the interoperability space to also be thinking about PHR issues in the
standards, so that the standards for interoperability are not done
independently without the applications for patients and families.

I think the last piece on this summary of our activities in this arena is we
have for about almost a year now have supported an informal PHR collaborators
network. And essentially what we do is we invite them once a month to get
together on the phone and share best practices or concerns with each other.

It’s simply a networking among PHR innovators. Just, for example, last week
there was the most recent call and the group wanted to discuss: What do we do
with lab results in our PHR programs?

Most of these are actually in the so-called “tethered” category —
that is, they have clinical systems and they are providing access to patients
of data from the clinical system. So in this case, the lab results is an
important sub-category of the overall PHR application.

And so, for example, in this call, as they shared with each other, all of
them treat pathology results in a relatively similar fashion — that is, with
great sensitivity — and they expect physicians to review those results before
they’re shared with patients electronically or otherwise.

However, the more traditional lab results, like blood work, one site on this
discussion releases all results, whether normal or abnormal findings from lab
results, with a two-day embargo before it’s released to the patient to allow
the physician to review it and decide how to communicate it.

Another site releases lab results that are normal immediately but those
results that are abnormal are given to the physician to discuss with the
patient separately.

And a third site doesn’t release anything until the doctor specifically
approved it.

I also recall anecdotally another site which releases everything without a
physician review.

Just, by the way, the idiosyncratic state law in California that passed in
July of ’03, I think, that will not allow a laboratory result to be delivered
directly to a patient electronically without a physician’s prior review.
Doesn’t apply to paper results, just electronic results.

So this is an indication, I think Cynthia mentioned earlier and Mary Jo did
as well, that state laws vary on some of these issues, so for a policy point of
view, this lack of uniformity may be a good thing or opportunity for
experimentation but also very confusing for vendors and practitioners and
patients.

So we are staffing this collaborators group.

The last thing, and I think Linda may address this in her comments as well,
we have been developing a tracking list of PHR product at Connecting for Health
and we have about 125 products on our tracking system right now. We’re trying
to share that list with anybody who has a similar interest, and hopefully all
of us who are doing lists can collectively build the best possible tracking
system for PHR products, and as you all have already heard, there’s a wide
range of offerings out there.

What we’re seeing in terms of our tracking is that the electronic health
record vendors are almost uniformly now offering something like a personal
health record functionality, or if you want to think of it as a patient portal,
that’s become very common in the EHR space.

And providers are increasingly offering them, so it’s become a popular form
of support to members and patients through the EHR product add-ons.

There are also a number of emerging or new unconnected, untethered PHR
services being offered. I think in the earlier discussion you alluded to one of
them.

WebMD, for example, is trying to use their existing access to claims data
to pre-populate their products on the wellness health management side.

Medem company that has been supporting physician websites and so on in the
past will be offering a new product which can be a stand alone product for a
consumer to use or it can be tied to the physician’s office practice.

Cerner has — I think you’ve had testimony here — a diabetes initiative for
children with Type 1 diabetes that is that they’re offering.

And you’re going to hear today from health plans and others who are offering
other applications that are PHR-like.

So there’s a very flourishing field that we’re observing and trying to track
of both untethered and tethered personal health records.

I’ll just also mention that there continues to be open source development
and as in any field of technology, the open source movement has a foothold in
this arena as well.

The last thing, I think, we’re giving more attention to and as Connecting
for Health is looking at these other personal health technologies, we are
looking at the use of IPods, smart cards and a variety of other places where
people are beginning to develop PHR functionality.

So I think it’s just worth keeping our eyes on all the new technologies that
may not come out of the medical setting or the electronic health record setting
but will be vehicles for personal health records.

We did have a summit meeting in effect in January of organizations who want
to communicate with the public about EHR and PHR and raise this public
awareness of all the issues you’ve been struggling with. We had 17 groups
attend our meeting, each of which has some ideas of launching a public
communication strategy.

It’s a good sign. A lot of these are very sophisticated and mature
organizations, all of whom believe it’s important to educate the public about
these issues. They are very concerned about privacy, of course; they

recognize that everyone is using different terms, different vocabularies, to
talk to the public, and we need to see if there’s a way we can agree on some
common messages.

The issue that we’ve all talked about, the privacy spills the last couple
months, and what that does to the climate of public comfort with all this, so I
think there’s an agreement that we need to work together as a community to
explain the benefits that are possible in this arena but also to acknowledge
the risks that are there and then to talk with the public frankly about the
actions they can take to be informed participants in their own information use.

There are a number of collaborations now being discussed among these 17
groups and others as to how they might work together to develop a common
strategy for public communications about PHR and EHR.

Finally, the way I think Markle’s and Connecting for Health’s role is going
to be in the next year or two — we really see ourselves having three
particular hats we wear.

One is we will continue to focus on the public/private partnership. We were
very pleased to have the chance to work with Cynthia and others here in terms
of understanding the public sector agenda and we are very actively working with
the private sector, commercial parties, who are trying to launch these products
and services.

And the question becomes as a policy matter, which is really where Markle’s
interest is, of: What is the government’s role in all this?

The government has an opportunity, as you just heard from Cynthia, to
accelerate this field, to support it both experimentally and with structure
that might be needed, but we certainly don’t want to see that effort stifle the
private sector’s ability to be creative and innovative and develop new
solutions.

Secondly, we will continue to focus on interoperability and with a
particular view — everyone is focused on interoperability these days — we are
particularly interested in making sure that the platform for interoperability
can easily accommodate patient connectivity, family connectivity and consumer
use of this network. So we will try to work in the interoperability field with
that particular emphasis.

In particular, as privacy and data sharing become the emerging challenges of
interoperability, how do we make sure that the public’s confidence in the
system is supported by the rules that are put in place for these RHIOs and
other interoperable platforms?

And then finally, I think the public interest is a theme we want to keep our
eye on.

As you’ve already heard today, there are many opportunities for benefit to
the public by the personal health record systems that are being developed. We
as a society have spent a lot of money and a lot of effort in IT, and now the
public has the opportunity to directly benefit from that.

So we would like to see that the public, the consumer as a stakeholder, is
honored by everybody in this process as it goes forward.

And finally, we do share a view that this is an opportunity to really
rethink the way the health care system is designed and the way it uses
resources, and that’s the challenge of the next few years we think.

As PHRs and EHRs and interoperability become more common, how do we then
apply that new platform to really changing the way health care is delivered? We
will look forward to giving some thought to that.

Thank you.

DR. COHN: Well, David, thank you very much. I think Linda Fischetti from the
VA is our last presenter.

AGENDA ITEM: Presentation — LINDA
FISCHETTI

MS. FISCHETTI: Thank you, Simon. It’s nice to be here today.

In one of our meetings, as we were talking about what are we going to call
this, the issue came up — well, are there other existing names that we’re not
aware of yet that we could actually be using?

And so I had the quick and simple plan of sending a call to the January
international affiliates meeting of HL7 and getting back a list of names of the
different types of PHRs and then coming back here with the menu from which we
could all choose.

It turned out that the answer to this question is: No. So that makes my
answer a bit more lengthy.

[Laughter.]

MS. FISCHETTI: Plan 1 was to go to the international working group meeting.
They actually did not understand the question when out of context with the
chairperson reading my email, saying they were looking for established
definitions that are in use for the different types of personal health record.
It came back to me with “Need more information.”

So, of course, I found that ISO document and forwarded back to them the
second time.

So not being able to follow through with the HL7 plan, I just went out
through my network of people that I know and sent emails to people with the ISO
definition included so that there would be some sort of context to the
question, and I did get some responses back and I’ll summarize them.

It also came to my attention, AHIMA and of course the HL7 EHR’s working
group for personal health record was active here domestically and I included
some of their work in this presentation as well.

This is not comprehensive; this is just me sending out a query. This is not
me doing an extensive search of literature. Much of this is based on personal
communication. So even though I have a country’s name at the top of the slide,
it actually is a personal communication based on an email exchange that is the
content populating the slide.

And then I have some observations at the end which are really just mine and
are just organizing principles.

So the ISO 20514, which is scheduled to be published hopefully later this
year, does talk about a PHR and it has the emphasis that it is under the
control of the subject of care.

From Australia, I heard that there was really very little interest in the
PHR as a separate entity from an EHR. They are actually looking at making sure
that the infrastructure and the construct that they used to build EHRs are very
much the same, so they can populate PHRs from EHRs.

Within England, my colleague over there, Dr. Depacola(?), has said that
they don’t use a formal definition but that when he was doing his dissertation
for his Ph.D., he used the NCVHS definition, so that went full circle and came
back to us.

A reminder — the NCVHS definition starts with personal health records for
individual use and quickly goes into issues of interoperability and pulling in
information from physicians’ record.

Canada, of course, is working on their EHR, and then they gave me a number
of attributes that should be included when talking about personal health
records even though this is not part of their formal work of patient view into
a comprehensible health record — presentation data able to be understood by a
lay person; contains data entered by a patient; access to health care providers
controlled by patients; and easily transportable, print, browse, memory sticks.

From the Netherlands, I got an actual name — the Patient Experience
Dossier. I like that. And this is very much a patient journal for their
personal health records. And actually of the Dutch website that I printed out
and walked down the hall to one of my colleagues, he described it to me that it
was web-based, it was a not-for-profit organization funded by the government,
and patients were asked if they did see multiple providers, could they please
journal what happened at these visits so that then they would have it available
for the next experience.

When I sent out my domestic call, when I realized that I wasn’t getting too
much internationally, this came to my attention.

This is AHIMA’s definition for the PHR, and for me this was a fundamental
shift in how I was thinking. I started, you know, with just not really liking
the tethered versus not-tethered EHR, and this really puts the emphasis on
ownership and who owns the information that’s in the record. So I’ll go ahead
and read this:

“The Personal Health Record is an electronic, ubiquitous, lifelong
resource of health information needed by individuals to make health decisions.
Individuals own and manage the information in the PHR, which comes from health
care providers and the individual. The PHR is maintained in a secure and
private environment, with the individual determining rights of access. The PHR
is separate from and does not replace the legal record of any provider.”

And this last sentence is something that we’ve talked about back and forth,
you know, with: Can the patient then change the information that’s in the
electronic health record?

And I think it’s only logical that AHIMA, who of course has traditionally
been the steward of paper medical records, has spent some time working on this
and it’s given us the answer that the PHR is in fact distinct and separate from
a legal medical record that is expected to be maintained by a provider.

MR. BLAIR: That’s a good point.

MS. FISCHETTI: Not my point. It came from the AHIMA.

MR. BLAIR: That was a good point. Thank you for bringing that to our
attention. That does change the mindset, doesn’t it?

MS. FISCHETTI: Mmh-hmm, it does.

Okay, then on the next slide, PHR Issues and Activities, this is some of
the work that they continue to — they’ll be putting more and more work
products out on this.

The first bullet is that the PHR is not a legal record but providers’ EHRs
are.

And though it may be incomplete, the PHR is in a better position to be
longitudinal, containing information across providers if diligently maintained
by the individual.

And then they as well — as David noted, many people are in fact doing
outreach to communities — they have in fact started myPHR.com consumer
outreach and they’ve dropped this on this slide when I asked for it and I
didn’t take it off, so it’s a bit off topic but still there.

Within the HL7 Electronic Health Record Technical Committee, there is a
personal health record work group and they were asked to look at, with the
different types of permutations that you can have for an EHR, how would be the
standards be different? How would we need to look at standards different?

And what they came up with, they ran through the various permutations from
stand alone PHRs to fully tethered PHRs and stated that from the standards
perspective, the issue of tethering versus untethered really doesn’t matter,
because if it in fact is a fully tethered EHR, it’s really just a customized
view to existing information, and that is something that would be within the
domain of PHR standards.

If in fact it’s a stand alone untethered or a PHR that is able to be
interoperable with many different EHRs, that is different, and that will need
its own standard.

So if it’s just a view into an existing EHR, it doesn’t really impact the
standards world.

So my findings is that the answer is: No, there is nothing out there.

But my friend from the UK did send me different to what he suggested as
axes for measurement, and I shared these with Mary Jo and she helped me expand
them, and I’ve also paraphrased them to make more sense within this context.

And my observation is this, is that almost all of these definitions, no
matter where they come from, they all start with: This is owned by the patient,
this belongs to the patient, this is for the use of the patient, this is the
patient’s.

And that point, once that statement has been made, they all split off and
head into many various different directions. And if we tried to name all of
these, it would be quite a period of time.

Instead, there are five different categories, or five different axes, that
summarize the different ways that these definitions head.

The first one is type of information. Is it personal? Is it educational? Is
it benefits in terms of an insurance group?

The second is sources of information.

The third is ownership, custodianship and stewardship, which a conversation
with AHIMA helped me expand that concept.

The next is authority. And at one point in time,

I was thinking that authority should probably be grouped up with ownership,
custodianship and stewardship, but authority is unique in that it has the least
variability of any of these axes. So everybody that has a definition out there
pretty much all say that the patient is the person who has the authority for
sharing the information.

Now, this morning, Mary Jo used the words “authentication and
control,” and I think that possibly we could just change
“authority” to “authentication and control” if we decide to
reuse any of this.

Interoperability.

And then sponsorship.

So the observation that I’m making specifically on the tethered versus
untethered is that it puts the emphasis on interoperability, so I’ve graded out
all of the other axes and I have interoperability.

David has provided me with some historical context that I didn’t have from
when that term started to be used, and possibly I’m being a bit too simplistic,
but we can have that conversation.

What I’m going to recommend is that we start using language for our common
— you know, how do we talk about these things, how do we come up with the
language where we all know what we’re talking about, that puts the emphasis
much more on the ownership, custodianship and

stewardship, the ownership being, for example, who is responsible for the
information; the custodianship being, is it a vendor system, is it a private
bank that you’re paying for, is it somebody who’s convinced you to put the
information there?

Stewardship could be as well a vendor that owns that product, or you could
be in an environment where you have somebody like AHIMA or a health information
management professional who is in the role of stewardship over that.

And I should mention that authority should also be highlighted here, I
think, but of course authority, I believe, really it doesn’t have much
variability at all, so no matter which of these axes that you’re talking about,
authority stays the same; that stays with the patient.

There’s another bit of language that I use within my EHR world that I think
might be helpful here, and that is the ISO 20514 standard. It does talk about
electronic health record as a repository for information regarding the health
status of a subject of care in computer processable form versus an electronic
health record system which is a system for recording, retrieving and
manipulating information in electronic health records.

So there is a distinction there that’s consistent with IOM. In fact,
everybody internationally uses the 1991 IOM work where they actually make this
differentiation. So that started here as well.

And that is the end of my presentation. And the observations is that
authority never wavers and I think in our language we can put that on ownership
and then possibly it’s time to start distinguishing between personal health
records versus personal health record systems.

MR. HOUSTON: [Says he could not hear the recommendations.] She based the
recommendations right at the end. Could she restate those again?

MS. FISCHETTI: Yes. Yes, I will. Thank you.

The observations that I made was that authority never wavers. Emphasis
should be on ownership as well as possibly it’s time for us to begin to
distinguish between personal health records and personal health record systems.

And I’m just labeling these as observations, not as recommendations.

MR. HOUSTON: Thank you.

DR. COHN: Well, I want to thank all three presenters. I think this was sort
of fascinating and obviously we’ll open it up for questions for everyone.

But, actually, Linda, I just wanted to start off by just asking a question.
And I apologize — I always look very hard at slides where you only read part
of them and skip through the rest and it’s on a slide, so I found myself
continuing to focus on the ISO definitions and in fact you only read the first
sentence out of what was a two or three paragraph set of activities.

And I guess I wanted you just to reflect for a minute about — I mean,
obviously, you know, we’ve been talking about taxonomy and, you know,
definitions of piece of taxonomy but also I think we’ve all recognized that
there’s many sort of different things here and I think you wound up approaching
this through more the axes than almost a taxonomic relationship.

But explain to me why you — I mean, you obviously put all this ISO
information in but chose not to even reflect on it — can you tell me your
thought process on that?

MS. FISCHETTI: Obviously, I didn’t think about it in terms of including in
here too much.

The reason that I included it is that I did want to do the international
outreach and I think it’s important to note that even though this is an
international document in front of an international community, if you say the
term “personal health record,” people just don’t get it outside of
context.

And so possibly here in the United States we are spending a bit more time
on personal health records than other groups except for maybe, you know, the
Netherlands, which already has a project up and running.

Now, in terms of the definition itself, I like it because it does put a lot
of emphasis on ownership, which is exactly where I think that we should be
going.

When you take the four that they have here and compare it to the four or
five that Steve had come up with originally when we were first talking about
this in terms of one provided by an employer, one provided by an insurance
company, it was the sponsorship issues that we have here in the United States
that really were not reflected here.

If you have state-provided health insurance, you certainly will not have as
many sources, as many portals, for health information as you will here in the
United States.

DR. COHN: Okay, so you felt that the differentiations they made here in
terms of the various forms were not applicable in the United States?

MS. FISCHETTI: I think that they had the appropriate emphasis on the
ownership, stewardship —

DR. COHN: Yes.

MS. FISCHETTI: — guardianship, but it did not hit as many axes as I think
that we have.

DR. COHN: Okay. Thank you. Steve, I saw your hand raised, and I’m sure
others will have comments.

MR. STEINDEL: Yes. Thank you, Simon. I also would like to thank the panel.
It was actually very stimulating.

Just a few comments that may encourage comments back from the panel.

The first one — David, I really applaud the slight change in terminology
and major change in emphasis to personal health technology initiative. That’s
very important because of the confusions that we’re getting with the personal
health record, and as we heard from Cynthia, you know, how the government is
looking at personal health records is more of a series of things that we can do
with it and we’re looking for how are we going to use this from an initiative
and technology point of view. And I like that change of emphasis.

But one thing I’d like to comment from your reports, and I guess this is
because I’m a laboratorian and it raised my eyebrows, but this is an
interesting aspect of passing information on to the consumer and it has gone on
in laboratory circles for a number of years.

Most laboratory test results, aside from the actual result itself of
binary, they’re normal or they’re abnormal. So if you tell people normal
results and you withhold abnormal results, you have de facto told them the
result is abnormal. And in a lot of cases, you may have caused more anxiety by
doing that because the result may be slightly abnormal.

And so that discussion has gone on in the laboratory community for a number
of years, and it was interesting to see that has resurfaced.

And of course this type of medical information is not just true with
laboratory information. So it’s something that I think your group should
probably keep in mind as this discussion goes along further.

And then there’s another interesting aspect of this, and this has to do
with the California law which I haven’t read, but just commenting on. What most
people don’t realize is every laboratory result has already been seen by a
physician technically because they have to be approved by the laboratory
director who is empowered to do that and is usually an M.D.

So, you know, in a laboratory community, we don’t understand a law like
that, because technically it has already been seen and therefore can be
released. And so that’s another thing to look at, is the chain of actual
authority on release on these laws.

But those are two things that I found interesting because we’re going to
get more and more involved with this as we release results more and more to the
individuals.

But this leads me to a comment with regard to Linda’s because it has to do
with the concept of ownership. And what I find is that consumers tend to
confuse ownership and authority.

And that may be one reason why Dr. Brailer had some very strange reactions
when he was talking about authentification and control. These are very
confusing concepts to the consumer. And Mary Jo, I believe, was involved with
it, and some other people in this room may be involved with an ad hoc
discussion for a group that Helga Rippen has put together.

And there were some lawyers involved with the group and we had elaborate
discussions on the question of ownership because ownership is a legal concept
and it’s also a personal concept. And where those two intersect causes a lot of
confusion.

And I found, you know, authority — I think you’re quite correct there.
Authority never wavers. People believe they control their medical information.

The question of ownership, however, is quite confusing, you know, and we’ve
heard that several times even in these presentations the comment that the
personal health record will never replace the legal document that the provider
has. That is a concept of ownership, that the legal document is still owned by
the provider. So do you have dual ownership of the data? So it gets very
confusing.

And I think we’re going to have to have some discussions on terminology
there and resolve that issue somewhat before we can move forward.

And those are my two comments, Simon, if anyone in the panel wishes to
comment in response.

MR. LANSKY: Can I make one quick comment on the abnormal-normal problem?

I think it raises back the issue of standards of vocabularies in terms of
what is represented to the patient as normal or abnormal, and when it’s
represented to the patient. If there’s no uniformity about that and the process
of disclosure or information or patient education is all over the map, that’ll
be a challenge to everybody.

DR. COHN: Yes. I guess I should just jump in as a California physician. And
I don’t think I have a strong feeling one way or another about this one, but as
a patient, you can imagine that if you have the first episode of an abnormal
finding, you’d probably like to hear of it from somebody who can help interpret
the results for you and talk to you about next steps as opposed to discovering
that as you wander through the Internet.

And I can just think of many occasions where if I had an abnormal finding
and I wasn’t expecting it, I would really like to have a conversation first.
And that may have been some of the rationale for that rule.

Obviously, you start talking about cholesterols and, you know, there’s a
large population in the country who has abnormal cholesterols just sort of by
definition and they vary up and down but slightly elevated often. Whether or
not that has to be reviewed every time is obviously an arguable question.

But anyway, obviously I’m not a California lawmaker, though. I can only
observe on this one.

Questions from — Mary Jo?

MS. DEERING: Let me just jump in and say it took my provider two months to
get back to me with test results and he never did until I bugged him, so I
think that the converse of that is the responsibility of the provider then to
be on top of those test results.

DR. COHN: Well said.

MS. DEERING: But I have a question for Cynthia and another one for Linda,
and I don’t know whether you’ll allow me to do them sequentially or not, so
maybe I’ll start with Cynthia since she was first.

And I have to sort of, in full disclosure, say this is prompted by my own
personal experience, professional experience, when the government first
discovered the Internet and websites and actually ODPHP did the very first
consumer health portal.

And we were out there; we didn’t care if we were the first. Then all of a
sudden — and the reason that we did it, it was Federal-wide, was to overcome
the information silos. Well, within two years, everybody had their own web
portal, and you were back to a new form of silo.

There’s something that tells me that we are going to have a — I think you
sort of gently alluded to it — proliferation of PHRs. I suspect that there are
many agencies that are already planning them in addition to the ones that we
already know about.

So I guess I ask you: Did the report say anything about, you know,
priorities for coordinating that possibility? And I know from experience it’s
an almost impossible job because it’s the agencies that have the authority, not
the Office of the Secretary for anybody. I mean, at least that’s the way it
tends to play out so often. So, I don’t know — did you get anything on that?

MS. BAUR: Well, I think to follow up on that is staff know, but probably
people outside the Department may not know, under the previous Secretary there
was this one HHS initiative and it cut across virtually every part of the
Department.

There was this idea that — I mean, it went from something as simple as
press releases in which CDC and NIH were no longer just to say CDC and NIH;
they had to say the Centers for Disease Control and Prevention, part of the
U.S. Department of Health and Human Services, something as basic as that, to a
much more coordinated approach.

So I think you’re right. The report is very clear in saying that
coordination in itself should be a priority issue to be addressed. But I think
it’s also clear in saying you actually need mechanisms for doing that.

I mean, it does say that, you know, the National Coordinator’s Office
clearly has the authority to do that. It has the mandate to do that. The
question is, how do you actually operationalize coordination when the agencies’
incentives tend to be aligned with their missions and roles that were outlined
at the beginning?

So if each of the agencies sees it in terms of its particular role and
there’s no strong incentives to necessarily coordinate with somebody else who
even has that same role, so provider to provider or payer to payer,
employer-employer — you know, there’s roles that cut across the different
agencies, but if there’s no incentives and the coordination mechanism itself
doesn’t necessarily have the ability to help the agencies realize, I guess, you
know, sort of what they will derive — I mean, because coordination is an
expensive activity.

You know, the agencies do have to give something up to coordinate. And to be
honest, most of them don’t like to do it.

And so I think that, you know, that is something I think that the Committee
could, you know, sort of provide some insight into because the Committee was
the one that essentially called into being the National Coordinator’s Office.
It was the top priority when the Information for Health Report was creating
this office.

So I think that as you, you know, think about this, the sort of very high
level mechanism is there to do the coordination but it’s sort of what is that
next level that’s actually going to make it happen?

And there were some — do you want to elaborate on that, David?

I’m sort of flipping through here, but there were a couple of priorities.

MR. LANSKY: May I have one comment while you look?

MS. BAUR: Sure.

MR. LANSKY: I think it’s heightened in this case because unlike some of the
other history you cited, Mary Jo, here I as a resident of the country, my
personal health information may end up being scattered across multiple Federal
repositories. And this last week’s release of the USDA food pyramid is a small
example that was off our radar and suddenly there’s a little miniature PHR
about my diet and nutrition habits and it’s going to be all by itself in a
little silo while over in other agencies other things are being done similarly.

So the fact the government is custodian to my information in whatever form,
and that fragmentation is a new layer of complexity for coordination.

MS. BAUR: I did find this. There is a section that has six areas in which
they thought coordination and integration were particularly needed, so I guess
these would be the priorities.

One was dealing with these diverse PHR models. And it goes back to what
Linda was saying. You know, everybody’s sort of talking about a different
animal which is something that the Committee has talked a lot about through the
hearing.

The second was in this issue of standards, and we’ve talked a lot about
that this morning.

We talked about privacy issues and relevant laws and regulations.

Identifying exactly what kind of personal health information we’re talking
about and what are the tradeoffs that we’re going to make?

Intersecting with these other jurisdictions, whether it’s states or
territories.

The research agenda.

And then the final priority would be in terms of costs and benefits and
then the actual capacity to carry this out.

I mean, so it goes to the fact if this capacity is distributed across the
Department currently, it’s not focused in the National Coordinator’s Office.
Even thinking about how do you bring that capacity that exists scattered across
many different places, how do you even bring that together in a focused sort of
way?

Those were the six priorities.

MS. DEERING: I just wanted to add, if I could, that it seems to me that
what David raised maybe also suggests among your various priorities, if they
were all obliged to work collaboratively on standards so that at least their
information was captured in a way that was ultimately exchangeable, that would
be a baby step — actually, it would be a huge step, given all the effort
required — but at leas that would be something very tangible that could
happen. So at least you haven’t captured it in a silo; you’ve captured it in a
silo with plugs.

MS. BAUR: I guess, you know, the precedent is that people do seem to feel
like the CHI effort was worth it. That was something that caused them to
collaborate, and people do feel that there was a payoff at least from what
interviewees they talked to.

DR. COHN: Anna, were you trying to get through?

MS. POKER: Yes, I’m sorry about that. I’m right back on, though. I
apologize, Simon.

DR. COHN: Oh, no — I just wondered if you had some issue on this one. So,
okay.

MS. POKER: No, no. Thank you, Simon.

DR. COHN: No problem. Steve Steindel, I think, had a follow-on on this one,
and then we have Paul Tang, Gene, and then we’ll give John Paul an opportunity
if he has any questions.

MR. STEINDEL: Yes. Just a comment on what was just commented on.

I think people we’ve had mention at NCVHS at various meetings that Dr.
Brailer’s office has started the Federal health architecture initiative, which
is a carry-on from the CHI initiative.

And one of the work groups under that initiative is involved with public
health surveillance and it’s focusing on bringing together the various
surveillance systems that are being used within the Federal government into
some type of common architecture. And if we extend this further, obviously it’s
the surveillance systems material that we’re looking at that’s going to be
involved with the personal health records.

So there is some rudimentary work being done on this area at this
particular time and we’re hoping it will expand more rapidly in the near
future.

DR. COHN: Steve, thank you. Paul?

DR. TANG: I also appreciate the presentations of the panel members because
it’s very illuminating and very helpful.

I have comments for each of them; I’ll go in reverse order, the most recent
first.

So, Linda, I really appreciate all the various definitions of a PHR and a
lack of a single unifying one.

What I found very interesting is the AHIMA definition. As you alluded to,
they’re the professional group that’s supposed to take care of this health
information at least on the provider side. And one question is, on the personal
side — and as you said, the definition addressed a number of the key issues
and particularly the one of is this something that they can change, so on and
so forth.

So I wonder perhaps if you have some insight into if we agree with all the
statements about ownership and management and not being the legal record and
the predominant form of a PHR is derived from an EHR, logistically or
operationally, how do you separate the two?

Did any of the groups deal with that? How do you separate the two when I
want to manage something that is derived from, or I’m actually a portal into
somebody else’s record?

MS. FISCHETTI: I think that that type of question would be the perfect one
to hand back to AHIMA.

As AHIMA moves forward, and they are going to do a bit more work in this
space, I think that a question such as that would be important to hand back to
them and get their professional opinion.

DR. TANG: And for David — first, I need to make a disclosure. It’s not a
conflict of interest, but I do participate with Markle’s Connecting for Health
and the Personal Health Technology Council.

DR. COHN: Yes. You’re also a California physician.

DR. TANG: What has that got —

[Laughter.]

DR. COHN: You can disclose it!

DR. TANG: The point that David made was the policies were made, you know, 75
years ago about the care and feeding of an electronic book, the medical record,
and what’s interesting in the morning’s discussion is all of a sudden we’ve
never had to face the possibility of a third party managing the medical records
of a provider. Now we’re dealing with a third party managing the personal
health information wherever that’s stored.

But it’s to David’s point that our policies need to catch up with something
that’s, you know, going to be coming into being very quickly. But that is
really important for us to do.

So that’s more of a comment.

And then, on Cynthia’s, I think the challenge is what role does government
have? And I think you listed a number of really good ones.

One is the vision, which I think you emphasized a lot, and I think the
implications and ramification is we need better public education, and what is
it and what does it do for you, and what are the risks? And that’s a clear role
that government could do.

What’s the appropriate use? And, to the exclusion of other kinds of uses
would be a sort of a corollary to that.

Encouraging the standards development and even facilitating, perhaps
maintaining.

And then back to the privacy protection as the guardian of the public
interest and the public health.

Does the government have funding for all of these various roles because
they all seem very appropriate for the Federal government, public interest,
public health?

MS. BAUR: You want an answer to whether we have the money?

[Laughter.]

MS. BAUR: I think the answer is no.

But I think that it goes back again to, you know, that early slide about
what the roles are if the different agencies and offices are interpreting
whatever it is they’re doing in terms of the missions they’ve already got and
the things they already have funding for, and that’s likely what’s going to
come out of the sausage grinder, right? You know, if that’s where the money is
already and the PHR’s getting sort of folded into that, then you’re likely to
get a produce that reflects what that funding was for in the first place.

I mean, David might be able to address this, but to my knowledge — or
maybe Steve or Mary Jo know this — there’s not a lot of new money in most of
these places going towards this to create sort of a new initiative. They’re
shaking their heads, so you’re basically seeing it playing out in terms of the
funding people already have.

DR. COHN: Yes?

MS. DEERING: Let me just speak for the approach that NCI and our office in
particular is taking, and it does sort of follow the concept that you say the
government has the vision, it does the model, it’s the leadership role, and the
Center for (?) in particular is very much an

open source shop — I mean, they’re really software developers — and as
both a matter of philosophy, policy and practice, their approach is to develop
standards-based prototypes through an extraordinarily collaborative open
process and only take them to a certain point and then build in certain
licensing that is both protective of the public’s interest but also pro-vendor
because they do need to be sustained and maintained and get that out there.

And in the area of personal health records, that’s what they want to do, is
work really on standardizing the patient data front end, the protocol
representation, especially the eligibility criteria back end, and then maybe a
little bit over and beyond that is to the patient interface and the sort of
usability standards issues.

And one of the reasons I mentioned it other than as a model, I don’t know
all the other parts of HL7 — I have only interacted with it through the EHR
effort which I’m told is very unusual, it’s very high level, it’s very
conceptual, and therefore I could understand it.

But now I’m in a shop that has been down there working in not only in the
weeds but in creating the muck that grows the weeds. I mean, these are the
people who are really doing deep standards work.

And there is actually a lot going on in the clinical space and I’m sure
it’s driven because of the cost interests of, you know, pharma and others, but
some of those people are very interested in playing with us around using the
caMATCH program as a vehicle for standardizing the patient front end.

And so it could well be that that’s a horse that can be ridden a little
ways, and I think what you’re just reminding me is that while originally we
were reaching out only to people who were working around clinical trials, we
probably need to reach out to people who are thinking in terms of personal
health records, especially those that are collecting really clinical data at
this point as opposed to just the general life style data and bring them into
the effort as early as possible.

DR. COHN: Mary Jo, we may want to hear about that at a future hearing, so
— please. Gene, I think you’re on next.

MR. STEUERLE: I have a very specific question with respect to what’s going
on with the interjurisdictional aspects of this. And, David, it came up with
you, and, Linda, it might come up with you in the sense of whether there’s any
lessons from the European Union experience because they have some of the same
questions that will arise as it goes across Europe.

If I can make analogy to another area, often when states start getting
involved in a lot of laws where there is electronic transmission of data, what
actually happens is the laws are actually constantly violated in practice
because nobody can actually deal with all of them.

A simple example is anybody here who’s involved in giving money to
charities, say, where you sign up on some website, sponsor a bike ride or
something like that. Technically, every state is supposed to have a filing with
respect to solicitation in that state, but in practice it’ not usually done and
the states often don’t enforce it.

Because you started getting into the state variations, it started having me
very worried about the extent to which state laws could really not only make it
harder for new vendors to come in because now they may be dealing with 50 state
laws, but in actual practice, when you start talking about transmission of data
across state to study, it’s not even clear where you put the geographical
designation often on who’s doing what where. You know, you may have software
developed in Alaska and scientists working in Utah and, you know, lawyers that
are dealing with the stuff in New York, and who knows where the data’s
transmitted from whom and to where; sometimes you don’t even know who all the
recipients are.

So I would guess the bottom line of the question is, is there some
coordination effort that’s beginning to take place I guess in DHR as well as
PHRs in this area across states to try to minimize the extent to which state
interference could really dampen competition as well as to make it easier for
those who are operating to do things and then, B, and I have the feeling you
wouldn’t know the answer to this, but is there any way to garner lessons from
the European experience even if we don’t know yet? Is there someone there we
could contact?

MR. LANSKY: Just a partial answer. The issue as you summarized it has become
very — people are aware of it.

And particularly as these RHIOs begin to have meetings and planning sessions
and the RHIOs themselves would come to these multiple jurisdictions, they’ve
got to deal with some of these issues exactly as you sketched them.

One thing we’re doing — Connecting for Health has a Policy Committee which
is trying to develop a model set of policies which could be uniformly either
applied or recommended if they’re legislative orientation.

And we’re working associations, governors and state legislatures to try to
think through: Is there a pathway toward some kind of reconciliation of these
things from a voluntary basis, you know, a practice basis or a voluntary basis
in the state level?

So I think we’re aware that people want to start identifying where the
potential jurisdictional clashes or variations that have to be reconciled.

DR. COHN: Now, we’re going to give John Paul an opportunity. John Paul, do
you have anything that you’d like to ask or comment on?

MR. HOUSTON: Yes, just a comment I have.

I guess one of the more troubling things that I see in all of this is that,
especially as it relates to, you know, for profits or large companies that are
developing PHRs that they’re going to deliver to the marketplace as well as
some of these other initiatives, I think there’s a huge issue — I know we’ve
talked about it a little bit today, about how you deal with the fact that a
patient may have multiple PHRs, may want to decide that it wants to utilize one
over the other or might change preferences, and these PHRs, especially some of
the ones related to chronic illnesses and diseases, may only have a subset of
information that is contained in other PHRs or might have additional
information that really is so specific, it’s really never been thought of as
being part of some of the PHR standards that are being discussed.

I’m just sort of understanding: How does this all fit together, or how are
we going to deal with some of those problems?

DR. COHN: Do you want an answer or do you just wanted us to think about it?

MR. HOUSTON: I’d love to hear people’s thoughts —

DR. COHN: Okay.

MR. HOUSTON: — on some of that.

DR. COHN: David, you looked like you were moving —

MR. LANSKY: Well, something that came to my mind listening to the whole
discussion today — it may be worthwhile at some point for this Committee or
another entity to develop a set of use cases which raise some of these issues
that are scenarios or ethical challenges or business conflicts that might arise
that would, by articulating the use cases, and then having some discussion or
structure to consider options for adjusting them, it might help people think
through how to proceed.

I don’t think there’s really a vehicle for that discussion to happen at this
point.

DR. COHN: Steve, was this a follow-on to this?

MR. STEINDEL: Just a comment —

DR. COHN: Okay.

MR. STEINDEL: — on what John Paul was saying.

I think we need to realize that people today have multiple health records.
They see different providers, sometimes anonymously, et cetera, and that’s
going to exist in the electronic world and in the PHR world as well.

So I think one of the main comments I have there is we’re going to have to
learn how to live with it. We’re not going to make it go away.

DR. COHN: Okay. Bill Scanlon?

MR. SCANLON: I’d like to make a comment with the concern that being a
newcomer to this and observing sort of your deliberations for the first time
that this may sort of not be in the right context. You may already be thinking
about these kinds of things.

But in Mary Jo’s presentation this morning, it came up the idea that
reimbursement is a key to the developments in this area, and David talked about
the idea of system transformation.

And I’ll give you my perspective in terms of kind of why I’m interested in
this and how it relates to the work that I’m doing with Bob on the quality
subcommittee.

I mean, one of the things I think that economists typically believe about
sort of our health care systems, perhaps the fundamental issue that we have in
terms of why we just don’t rely sort of on the marketplace, is that there’s a
real information imbalance between patients and providers.

And the information imbalance leads to sort of poor care both from the
perspective of overuse and under use and that we could potentially improve
things a lot if we were to change sort of that balance.

And there’s a question here which is how we are using the IT sort of to try
and change that information imbalance. And it’s more than data — it’s
information that we need to do.

And, Simon, you used the word “interpretation” before about test
results. That’s the key, is sort of how do we integrate the interpretation so
that the patient is better informed?

And there’s a potential that it’s going to be a function of a third party,
and we can ask ourselves: What is the appropriate third party? We already have
third parties involved in most health care transactions in this country —
they’re payers.

Now, payers bring to the table some conflicts of interest just the way
providers bring to the table some conflicts of interest. So it’s not
necessarily the optimal sort of choice or the simple choice but it’s
potentially a choice, a choice that with safeguards, their sort of accessed
information, their ability to use information in real time, could influence the
way the health care system operates.

This is the broader context in which I think about this, which is why I
want to sort of learn about your deliberations and where we are with respect to
sort of the development of IT in order to think about from a system
perspective, from a payer perspective, what can we do in terms of making
improvements?

DR. COHN: I think we’re all sort of nodding our heads as that being one of
the issues. I guess that’s probably for the work group that, you know, I think
at least one level there’s the issue of making sure that no matter how the
environment plays out, the patient is protected and has access to their
information as well as can move it back and forth on a very basic level.

But I think you do bring up some very interesting economic models and
information flow models as we move forward.

MR. SCANLON: And I think the issue is how do we move beyond protection to
improvement, because I think that’s the key. We really have a sense that we
have a system which is sub-optimal from all kinds of perspectives. It’s not for
lack of resources; that’s not one of the perspectives that I think we feel that
we’re deficient in.

What we feel like we’re deficient in is how the resources are used and how
they’re matched with patients’ needs, and so the issue is how can we channel IT
to be a tool to improve that allocation there.

DR. COHN: Well, and maybe I should ask the question — there were two
questions I had to our presenters.

The first one sort of is somewhat aligned with, I think, your question,
which I sort of also read as sort of like where is the business case in all of
this or where is the value proposition?

And I guess — this is both to Cynthia and I think also to David. I
listened to your presentations. I realize, Cynthia, you’re from the office and
promotion and disease prevention — I’m sorry — Disease Prevention and Health
Promotion. And David, certainly I hear your words.

In the back of my mind, I keep sort of going: geez — and once again, you
know, business case can be — you know, there’s value everywhere, of course, in
all of this, but I also tend to think of: Well, what is the leading business
case here? Where is the value initially that should drive everything else?

And I go, geez, yes, there’s health promotion and disease prevention and
then there’s also care of people with already known diseases. And I sort of
struggle. I mean, not that they can’t be both accommodated, but the question
is: What is really going to be the driver here?

And as you all think about it — I mean, if there’s a strategy, obviously
there’s a strategy without a direction or there’s a strategy that really
proposes a leading edge. I mean, where do you think the business case is as
really the initial driver here?

MS. BAUR: Well, I think everybody thinks it’s CMS, right? I mean, that’s
what CMS has gotten a lot of attention and that’s where the money is; if you
were to dissect HHS’s budget, that’s where the money is.

So I think people think it’s CMS.

But, I mean, I think the verdict’s out on that yet; I don’t think the full
analysis has been done to indicate whether or not that is true.

But I think that goes to the point about, you know, it would be relatively
easy, easy in bureaucratic terms, easy to deliver products. I mean, you could
envision the kinds of products that would sort of roll off the shelf from the
different agencies. And the report talks about some of those
“products” that are under development.

The question is, what’s the relationship, I think, of those products to
each other and the products of the larger goals or objectives?

As Mary Jo mentioned, we, our office, has some experience with this from
the perspective of doing a consumer health information portal. We also have
experience with from the perspective of managing the Healthy People initiative
for the Department.

Again, that’s the situation in which the agencies sort of own the product,
if you will. They own the diseases, the own the population, because that’s
where the money is, that’s where the actual programmatic activities are, is
down at the level of, you know, the CDC centers or the NIH institutes, or the
HRSA bureaus.

But without the Healthy People structure, it would be very difficult for
them, first of all, because they don’t necessarily know where people are
located in all these various parts of HHS. They wouldn’t, first, know who to
talk to, and they wouldn’t necessarily have a particular reason to talk to
them.

So I think it is sort of again — it goes back to the point that the report
makes, I think, very clearly, and I think we talked about this briefly at the
end of the January hearings because Jeff had his sort of “aha” moment
at the end where he said, “Okay,” you know, “This is it. I see
it.” You know, “I’ve got the big idea here” — is that the
visioning activities which in many ways is what the personal health dimension
idea represents, which is sort of a level above the record. It’s the dimension
that hasn’t been even fully articulated, let alone the record piece of it.

So, I think of it in terms of the product versus that next level up about
what is trying to be accomplished. And as David has said in the case of, you
know, mechanisms for talking across cross-jurisdictional issues, we lack
mechanisms for a lot of these things at the moment.

And I think there’s not a good way to necessarily talk about what the
products that we might want to invest in from a disease prevention/health
promotion perspective, how that could, you know, facilitate what CMS wants to
do, enhance what CMS wants to do — you know, maybe make a contribution so that
it focuses on something else other than sort of, you know, doing it for the
good of the order. There’s no real structure or incentives for us to
necessarily do that at this point.

So I do think that there are lots of things the Committee could think about
suggesting, you know, could be further explored.

DR. COHN: I’ll let David answer and then, Jeff, I’ll let you make a
comment.

MR. LANSKY: I don’t want to go back to Bill’s suggestion about the
transformational issue and Cynthia’s comment about CMS. I think the reality is
the business environment in which these products and services have begun to be
offered, rewarded — only rewards a certain kind of investment or outcome.

And the people who are thinking more dramatically about the transformation
of the health care system would envision their situation in which the
incentives are across the board so changed that there is a benefit to the
commitment to both interoperability and personal health records, because it
would create a reward for a variety of players in the health care system.

Right now, there actually isn’t much of a reward either for
interoperability or for personal health records for anybody in the health care
system except for some prepaid group practices and similar entities which have
a different financial model.

And CMS in a way is kind of a quasi-prepaid group practice, about the group
practice, and I think the leadership at CMS does recognize an opportunity to
redistribute resources in a way which would create the reward.

When we in our report talk about public interest as a distinctively
government role, I think we’re saying the rethinking of the incentive model to
reward health and health outcomes would be the main driver, to answer your
question. And it’s a chicken-and-egg problem. It’s probably difficult to
achieve the goals for interoperability or for personal health records until
those primarily government incentives have been readjusted.

DR. COHN: Okay. I ask a business question and everybody’s hands go up! Jeff,
Gene and Bill, and then we’re going to actually break for lunch, please.

MR. BLAIR: I think personal health records has opened a Pandora’s box. I
think that the nation kind of reached some type of a difficult consensus on how
health care information is used and we were able to get together and craft
basic guidelines in Congress for privacy of health care, personally
identifiable health information, and Health and Human Services was able to use
that mindset to go forward with the privacy regs and the security regs, and
that was all with a particular mindset that we had to protect personally
identifiable health care information. But the basic value and the basic use of
it was for patient care or reimbursement or research and all.

But personal health records has opened up a new issue, and I don’t think
it’s one that should be stifled. It’s another choice. And consumers and
patients should be free to make that choice.

And the choice is — and it’s going back to the idea that in addition to
all of the purposes of health care information that were considered within the
privacy regs, you now have a number of different business models that are
winding up saying: Some of this health care information could be a revenue
source. And that may be good or it may be bad, and it’s too early for us to
know because in some

cases it means that I don’t have to pay for my having a personal health
record, or my children don’t have to pay for a personal health record, and it
may be fine with me if the entity that is offering me that service is going to
get revenue from research organizations or pharmaceutical manufacturers and
therefore it’s free to me and it’s free maybe to clinicians and doctors.

Maybe that’s okay, as long as it’s disclosed to me and I could make my
choice.

That’s where the Pandora box is now open, is now we have some additional
choices and we don’t know how to regulate this, and we probably won’t for a
long time because a lot of different models will emerge and it may not be bad
for a while for the consumers and the patients to make that choice, as long as
they have the information to make it with knowledge.

DR. COHN: Gene?

MR. STEUERLE: You know, someone — I think you — asked me this question
before in another context about the business case, and I’ve thought about this.

I finally came to the conclusion finally at one point that in the end, the
case for almost all the things we talk about lay with the consumer.

It’s not that there might not be transition periods where different
providers or intermediaries might not be able to save costs here or there by
doing something. But in the end, the value added benefit side has to come from
a consumer actually wanting something and demanding that and then that working
its way through the system to the provider, to the insurance company, to CMS or
whatever. It seems to me that’s the fundamental case.

And that leads interestingly to the point that that case, or that consumer
demand, is in most areas led by marketing, which gets to some of the threats
that Jeff and others have been concerned with, but it gets to the question of
marketing.

In some ways, we don’t want to stop marketing even though we know that we
know that in marketing and in any other area, where it’s automobiles or perfume
or anything else, that there’s highly questionable aspects of marketing that we
wonder about.

But I think in the end some of this has to be consumer driven and by
consumer driven, that’s the value added to the system — as I say, there may be
some cost saving here and there, but I don’t know that the insurance companies
have a lot of incentives to worry in aggregate about cost savings except as
they find some advantage over their competitors.

But when there’s value added that the consumers want, then that drives the
whole system to provide something additional. And I just think we have to face
up to that.

DR. COHN: Sure. And we’ll be talking to more economists tomorrow to see if
they all agree with you or not. Bill?

MR. SCANLON: I’m sitting next to Gene; I’m going to agree with him. I mean,
that is consumer driven.

But I would give more credit to third party payers and insurers maybe but
also the idea of what CMS may be thinking about this point. I’m not privy to
what CMS is actually talking about, but they are talking in general terms about
the idea of pay for performance, and in the context of the Medicare Payment
Advisory Commission’s discussion of pay for performance, the role of IT sort of
has played sort of a critical role.

And the question is, sort of do you reward providers because they have sort
of incorporated IT sort of into the provision of services or do you make it so
that performance is a whole lot easier if they have the IT available to them?
In other words, make it easy for them to have the business case. They recognize
that this is something that the payer or the consumer is demanding and
therefore they’re going to adapt in order to be able to supply that product.

Because I do agree with Gene — this is going to be market driven, and the
key to the market here is what’s coming from the demand side. What do we expect
sort of in terms of being a consumer and because the providers decide will then
respond sort of to that.

I think this is something akin to what is happening in Bridges to
Excellence, but I frankly am not fully sort of up to date on that, but my
understanding was that they sort of have incentives for physicians’ offices to
adopt information technology.

And again, it’s the consumer side that’s driving this, so that’s where the
business case is going to come from because I’m not sure from a production
process that you are going to identify the savings that are going to make this
sort of always a wise investment.

DR. COHN: Paul?

DR. TANG: I’m just going to go back to Jeff’s point about informed choices,
and it clearly is the consumer’s choice and taking the necessity, the cost
benefit for them.

I wonder if the model of the IRB is a good one to pursue, though, in the
sense that it’s a consumer or patient’s choice whether to enroll in the
clinical trial. A clinical trial has potential benefit both to the individual
as well as to society and the rest of the population but there are some caveats
that are worth protecting the individual for, and that’s why the IRB process of
making it truly informed and insuring to the best that we can that a patient
understands the consequences, or the potential consequences, for good and harm.

And in the same way, in the privacy side, something which you cannot
retrieve once it’s gone, an asset which you cannot retrieve, maybe there needs
to be clearer guidance on how a consumer patient is informed and expresses
understanding about the risks and the benefits on that side as well.

MR. HOUSTON: Can I make a comment? This is John Houston. Can you hear me?

DR. COHN: Sure. Please.

MR. HOUSTON: Ultimately, the patient’s decision, though, to sign up for a
PHR, I mean you can’t do anything absent that occurring. I guess you could if
it’s linked to an EHR, or tethered to it, but I agree that there need to be
clearer use agreements that the patient can review and decide whether he or she
wants to participate in one of these things.

But like today, I mean, I could decide tomorrow I’m going to develop my own
website and put up all my PHI on it so that the world can see it. I mean, the
harm is one that is entirely within the patient’s control, unlike the IRB where
I think that the IRB is concerned about some very fundamental patient’s basic
issues that may not be apparent to, you know, somebody who’s not a medical
professional.

I guess I’m troubled by this because I think that, you know, that this is
ultimately within the patient’s complete control and I think that rather have
some disclosure of what the use of the data is going to be on the website or by
the PHR, the provider of the PHR, I think the patient’s ultimately got the
control here.

DR. TANG: I think everyone around the table is saying the same thing. I
think just like your analogy of basically saying for a clinical trials, you may
require some medical knowledge to understand what are the potential risks, in
the privacy area you may need some additional knowledge, information, advice,
to make an informed decision.

DR. COHN: I will observe —

MR. HOUSTON: I don’t think that rises to the need to have something like an
IRB out there that decides whether somebody’s PHR is or is not, you know,
worthy.

DR. COHN: Okay. You know, I’m going — I mean, we’re running into lunch hour
at this point and we’re not going to solve this one in the next three to four
minutes. This is obviously the purpose of us all coming to sort of, you know,
more of a common understanding.

John Paul, will you hold your thoughts and we’ll discuss them as the day
goes on?

MR. HOUSTON: Sure. At the point, Simon, though, I do have a meeting from
1:30 to 2:30 that was the reason why I couldn’t come down today, unfortunately.
So I will be back on at 2:30.

DR. COHN: Okay. Well, thank you.

And I want to thank all of our presenters for some very interesting
testimony as well as our members for stirring things up, including myself, I
guess.

What we will do is take a lunch break. Why don’t we come back at 1 o’clock
— hope we can do it in 45 minutes — and we will adjourn for lunch.

[Lunch break from 12:16 A.M. to 1:10 P.M.]

DR. COHN: Would everyone please be seated? Our first panel is entitled
“Health Plans,” and for this panel we have Doug Fonseca from the Blue
Cross/Blue Shield of Rhode Island who will be leading off.

That will be followed by Michael Parkinson, who’s the Executive VP and
Chief Health and Medical Office for Lumenos.

So, Doug, would you like to take the lead?

AGENDA ITEM: Presentation — DOUG
FONSECA

MR. FONSECA: Thank you.

First, I’d like to thank the Committee for allowing Blue Cross/Blue Shield
of Rhode the opportunity to share our experience regarding personal health
records.

Just a little background on Blue Cross. We’re a nonprofit, charitable
organization.

Our vision, and this really has one of the driving forces behind the
personal health record is to improve the quality of life of Rhode Islanders by
improving their health.

And we have core values around service, stability, health community. We
currently have 680,000 members and that represents 68 percent of the Rhode
Island market. And then we have some national accounts as well.

And in 2003, we processed over $1.7 billion in claims. I believe that number
is a little closer to $2 million right now.

A little background on the website itself.

We reengineered the site and relaunched it on October 15th, 2002. Prior to
that, the site was really just brochure ware with a very rudimentary provider
search capability.

Our focus is around health and wellness, customer self-service, and
state-of-the-art technological infrastructure.

From the onset, the website was designed to be member-centric, so we have
capability that enables the member to manage their relationship with the payer,
with us, around things like, you know, requesting ID cards, changing address,
checking eligibility, things like that.

And then we’ve enhanced our provider search capabilities to include a
national search as well a dental national search. We’ve employed a Google
technology to use search throughout the website. We’ve licensed our health and
wellness content from Mayo Clinic. And last but not least, we’ve reached out to
help place the seeds to implement a personal health record.

These are just some stats on site traffic. As you can see, the bar on the
top represents the current six months and then the bar on the bottom — that
does show blue, that’s good — represents six months, a six month growth from a
year ago.

So you can see we’re averaging between, you know, probably around 800,000
hits — I’m sorry; not hits — page for use per month.

And then on registration — this will play a factor later on — we
currently have about 32,000 members registered, and by registered, I mean that
they have gone through some type of authentication process and they have a user
ID and password and verified by Blue Cross based our membership database.

As you can see, there’s a continuous growth pattern here, and really the
website is a work in progress.

So around the personal health record, one of the things that we did was,
you know, from the day we decided to reengineer the website, the personal
health record was on the table as a deliverable.

Some of the goals that we wanted to achieve, what drove to us the personal
health record, were around providing a secure environment for our members and
their families to store personal health information; provide easy access in an
emergency situation; and really, you know, foster good will, strengthen the
relationship between providers, members and payer.

The process was — we basically outsourced the process. We brought in IBM;
they did a comprehensive study around PHRs and they evaluated, I believe, 36
different vendors at the time. And their recommendation, and what we went with,
was HealthAtoZ.

So at a high level, the evaluation criteria that we used in selecting a
PHR:

Obviously, features and functionality.

Flexibility from a hosting and branding perspective. We wanted to make sure
that we could decide whether we wanted to host it ourselves or have the vendor
host it for us. And then from branding, we wanted to make sure that the Blue
Cross/Blue Shield logo was clearly represented as the premier logo on a
personal health record.

Market sophistication and experience. How many years have they been in the
space and what has been their success, financial stability and solvency?

Their compatibility with our technical infrastructure.

Obviously, security and privacy.

Their vision, is it compatible with ours?

We actually just — a note on that — we actually had at the time we
launched this site, we had a document developed by our COO and senior staff
called Future State 2007, and really what it did was it was like going into a
time machine and going to the year 2007 and how did the company work in 2007
and what kind of functions did it perform? From a technological perspective,
there was a lot of emphasis on the Internet, to be able to deliver some of that
capability.

So, obviously, also price competitiveness, navigation, usability and then
scalability.

So as I mentioned earlier, the personal health record was part of our
initial implementation, or relaunch.

Our numbers are, quite honestly, low. We have 1,012 members currently
taking advantage of this functionality. That’ out of the 32,000 that is
currently registered on the website, so that’s probably a little more than
three percent of the total registered population, and our total registered
population is about five percent of our total membership base.

We’re very sensitive to some concerns. Maybe the perception by the members
about, you know, am I filling out this information and is Blue Cross having
access to it? So we have a double layer of encryption, and on top of the
website being fully encrypted, we also encrypted the database so we’ve kept a
high, high level of security wrapped around the personal health record and very
limited access to it.

We’ve also taken the opportunity, since we’ve had some, you know, good
fraction with HealthAtoZ to enhance and customize the product, and I’ll talk
about that a little later.

This clearly supports our corporate vision, as I mentioned to you, State
2007, and it enables the member to take more responsibility for tracking, you
know, their health information, family history, things like that.

At its most basic form, we kind of call it an electronic shoebox because it
provides the capability, instead of keeping a real shoebox and keeping receipts
and medical records at home, we made it electronic.

So we track things like personal information, including emergency contact
information, family medical history. The PHR contains an immunization history
and planner. We have the capability for tracking allergies to food and drugs.
History of personal illnesses, past procedures, hospitalizations, medications
and/or supplements, contact information for other health care practitioners,
clinics, et cetera, insurance information, and advanced records.

And when I say advanced records, we’re talking about living wills and GNRs
and things like that, and we don’t actually contain the legal information, just
a point of contact — who is the person that holds it and what the location is.

MR. STEUERLE: Can you tell me who enters this information?

MR. FONSECA: The member. This is all self-disclosed information. We do not
fill out any of this information.

I mentioned medications. You know, from a Blue Cross perspective, we can
share with the member the medications that Blue Cross has paid for, but we
don’t know what they’re buying over the counter, so this is a tool that enables
the member to actually enter the fields of the counter tech medication, and
more importantly, with a drug intervention database, they can key in their
drugs plus the medications that are available that they get via prescription
and their drug intervention database will, you know, come back with a very
simple stoplight metaphor to kind of tell them, you know, this is okay —
green, yellow, red — and kind of give them some direction based on that.

We have the capability, and this is one of the enhancements that we worked
on, to share this information with the provider. And we have integration with
another set of tools called “disease or condition trackers,” and I’m
just going to talk about that very briefly.

This disease and condition tracker is really just a set of tools that
enable our members to create and maintain health improvement plans. And we have
several different tracks they can go down — fitness, diabetes, cardiac care,
pregnancy and asthma.

From a benefit to provider perspective, hopefully this has potential for
reducing paperwork. The idea is that the PHR is fully printable as a document;
you can generate the ports off the PHR. And when a member is going to see a new
physician, a specialist et cetera, they can actually take that with them.

It’s a comprehensive, secure source of self-disclosed patient data. Again,
as I mentioned earlier, family medical history, allergies, contact information
and then of course insurance information.

The next bullet talks to emergency department. One of the things that we’re
doing as a pilot with a couple of local hospitals is enabling some information
to be exposed in an emergency room setting.

So based on conversations that we’ve had with physicians, there is value for
us to be able to share prescription history and medical history — like if
they’ve had an MRI recently or if they’re seeing a cardiologist — and in
addition, again, this is all wrapped around member consent, we can share PHR
information also in that emergency room setting.

Again, it’s still in pilot, so we don’t really have any results from that
and the success of that at this point.

We have a couple of customizations that I mentioned earlier. One is we
provide providers access to the personal health record. Again, it’s driven by
member consent and it’s view only at this time, so if up on the screen there’s
an image of our web page that is available for a member and it’s called manage
access to your personal health record, and basically it gives the member an
opportunity to identify physicians that they want to share their personal
health record with.

From the member perspective, we’ve tried to build out some functionality
with regard to drug claim history. Now, this is on the Blue Cross side, so, for
example, if they’re in the process of building out their medication log in
their personal health record, we’d put a button on the web page that says
“view my Blue Cross prescription history,” and that page that you see
up on the screen now is an actual page.

So when the member clicks on that, it allows them to have access to a
prescription claims history page that we’ve built internally and they can take
that information and move that into the personal health record. So it kind of
facilitates getting that information in and provides a tighter integration with
some of the information that we already have. Again, that is also member
driven.

We don’t push any information at all into the PHR unless the member has
requested it.

This is my last slide. You know, for next steps, we’re looking at using the
PHR for more access. It currently is a terrific tool for capturing a
comprehensive history of the member and their family. It facilitates decision
support for consumer-directed health care.

In fact, one of the things that we’re doing at Blue Cross/Blue Shield of
Rhode Island is we’re rolling out a consumer-directed product very shortly and
when you think about what is in the personal health record, this could be a
very valuable tool for helping the member decide just what they want their
consumer-directed plan to look like.

You know, how much do they want to put into their flexible spending account?
You know, if there’s flexibility in terms of a health reimbursement account,
they can drive some of this based on looking at what their history is, because
they may not have that history captured electronically or on paper, for that
matter.

So we see a real synergy there between consumer-directed products and a
PHR.

We also looked at using the PHR as a communication tool between the
provider and the patient.

Currently on the website, we have secure messaging enabled for
patient/provider, for customer service and the member and for the member and a
care management team. So there’s some real opportunities to tightly integrate
that with the personal health record.

And, you know, of course, as we all know based on the conversations this
morning, we’re looking to integrate with physician EMRs.

And there’s another initiative going on in Rhode Island and I believe Blue
Cross/Blue Shield of Rhode Island is funding EMR tools and they’ve selected
three products and Blue Cross is providing financial support for the docs
participating in that pilot.

The last bullet is about interface for chronic condition management. Blue
Cross has a team of care managers, if you will. They’re RNs that work with our
members that have been identified as having chronic diseases or have the
potential for chronic diseases through our predictive modeling tools.

So one of the things that we’re looking at is actually opening up the PHR
again, based on member consent, to use that as a medium for interacting with
the care managers at Blue Cross/Blue Shield of Rhode Island.

So that’s all I have.

DR. COHN: Well, Doug, thank you very much. Michael Parkinson?

AGENDA ITEM: Presentation — DR. MICHAEL
PARKINSON

DR. PARKINSON: Good afternoon, everybody.

A quick background on a personal note, it’s great to be here with Mary Jo
Deering and this laudable effort. Mary Jo and I go back a few years. I had the
opportunity to work in the Office of Disease Prevention and Health Promotion.

And what you’re going to hear today is some very personal perspectives.
Some of them may be controversial and provocative, but that’s what Federal
advisory committees are for, I think.

I spent 20 years of my first life in a top down, single payer system called
the Department of Defense where we had many of the advantages that the private
sector never had or could dream of, and by and large, we didn’t do quite as
well as I thought we should. So we had electronic medical records, or as close
as you could; we weren’t as fast as Ken was over at the VA, but we spent an
awful lot of your tax dollars on IMIT and, you know, CHCS-2 and multiple
vendors in trying to get it right.

I then basically went for two years to the Public Health Service where we
talked about who really pays for graduate medical education? Shouldn’t we kind
of be a little more obvious and up front about how much Stanford gets for
training residents rather than cost-shifting to private employers? Nobody
listened in 1990 when we did that.

And I left the military four years ago, convinced that unless we got new
incentives in the system and better aligned infrastructure to reflect the right
incentives in health care that the information that I was pushing on doctors
and patients for 20 years would become much more viable, hence my move to
consumer-driven health care.

Lumenos, in the spirit of Doug, a little background, is a five-year-old
company. We started with a concept. We’ve raised about $115 million.

When I first joined them four years ago, we had no clients. We now have 90
corporate clients. City governments are now moving in this direction. And
increasingly we’re in governor’s offices talking about Medicaid demonstration
projects for consumer-driven models.

Those 90 clients generate about a quarter million members around the
country. And most of our clients have been there three to four years running
now, so there’s really little or no turnover and the growth is quite good.

So today what I want to talk to you about in short order, because I feel
like I had to update you a little bit on what this term means and what are the
trends in the industry, and as a physician who’s trained in both primary care
and preventive medicine, why do I see the promise as it relates to this model
properly done? And what are the implications for health information technology
and personal health records after four years of being on the road, talking to
doctors, hospitals, CFOs, as well as literally hundreds of leading corporations
in the country?

The reason that we’re here and the consumer-driven was created, it’s the
same reason that we largely created HMOs in the ’80s — it’s cost pressures.
Seven years of double-digit cost increases with less to declining quality for
the money we were spending, and employers were looking for a new model.

Like many things in government, we don’t innovate very well in government,
but we model the government programs after things that appear to work in the
private sector, which is why I wanted to be on the innovation side.

And the increasing realization that employers have that adding a
five-tiered formulary to a three-tiered formulary that largely doctors nor
patients liked or understood was probably was not the answer. Tweaking co-pays,
raising deductibles, having more and more nuance networks with the networks
with the networks probably was not the way to go, and actually employers were
getting a lot of push back from employees saying: “Don’t restrict my
choice — it’s really my money. Let me kind of see it and drive this car.”

So, consumer-driven health care, which I’m going to confine to
account-based plans, are really health reimbursement arrangements, health
savings accounts.

The estimates are that by 2008, approximately 20 million Americans will be
in these types of plans. All of these estimates have been under-estimates year
over year; it’s happening faster than people saw the HMO or PPO movement grow.

And that I think is for several reasons.

One is that the PPOs and HMOs continue to deliver costs that quite frankly
the employers can’t swallow.

Number two is as they impose more of the managed care restrictions, they
get pushed back from the consumer/patient. I don’t want to see again that my
doctor’s dropping another network because they don’t pay me enough and I’ve got
to find another oncologist. It’s very real.

Try to find a good primary care doctor in San Diego — they just don’t
exist. They can’t make a living with the reimbursements they’re getting from
managed care plans and many of them, if you look at the survey data about when
they’re going to retire, it’s much, much earlier and earlier.

So absent doctors who are in some well-integrated systems which really
outside of the West Coast, in my estimation, are probably Kaiser, maybe PAMF up
there and maybe HealthPartners up in Minnesota.

Most of what we’re dealing with is a disaggregated medical system. It’s
going to be that way for quite some time.

This slide is just to give you a representation of the clients. It’s only
here to say to you that many people think that these programs are great for
white collar, high tech individuals like Intel or perhaps Stanford University.
But in reality, companies like Komatsu that make heavy earth-moving equipment,
or Macy’s that has hourly workers, these programs work very well for.

The reason being is that oftentimes salaried workers have a much better
idea of what a budget is than people who are white collar making three times
the salary.

And when you tell them quite out that a Z-Pak really is not $15.00 co-pay,
it’s $68.00, and your doctor’s been telling you, as I did for years, that you
really don’t need the antibiotic, no less the third generation cephalosporin or

Azithromycin and the pen VK really is probably good enough at $3.17, they
get it.

And it’s the reason that there’s been broad adoption of this product across
multiple entities, including cities like Las Vegas, which have a lot of hourly
workers where 70 percent of the employees are on the Lumenos plan.

Of interest is that these products are particularly suitable for health
care clients. Large hospitals — Baylor health care system, we now have nearly
50 percent of the 15,000 employees are on Lumenos. As the CEO of Baylor said,
“We did not build Baylor Hospital system to take care of Baylor
employees.”

And seeing a year where your increases have been in excess of 20 percent,
because we had high utilization with little or no understanding of how much
that MRI really cost if I was an employee in the radiology department, their
costs in the hospital industry are much higher even for age and clinically risk
adjusted populations of other employers in their geography.

You might also note on here there’s a big IT company called Cerner that
essentially makes hospital information systems — PHRs, ZMRs. Cerner went full
replacement with what we call our health incentive account product a year ago
and now has I think about 50 percent of people on health reimbursement
accounts.

So we see in the health care space these models are being taken up and the
physicians by and large like them because it reduces the administrative hassle
at the point of care, meaning that if I’ve got money in these accounts, I don’t
have to ask about co-pays, deductibles, nuances of co-insurance, five-tiered
formularies.

And secondarily, clinically if the patient comes better prepared, as Doug
mentioned, I don’t have to spend eight minutes of my limited 12-minute visit on
things that you already know because you’re being paid or incentivized to
understand before you come, and I see my 25th to 30th patient that day, which
is 10 more than I saw 10 years ago when the reimbursements were higher.

I don’t have time to go through these account-based products, but it’s
important to notice the elements that I got attracted to as a physician in
preventive medicine and primary care.

If we carve out evidence-based preventive services at 100 percent —
periodic health exams, screening tests, immunizations and selected counseling
— pay for those at 100 percent so there’s never a deterrent to the individual
getting those, as a matter of fact we increase the proportion of total claims
spent on prevention.

The average health plan spends on average two to three percent; at Lumenos,
we typically see five percent of total claims being spent there.

The message is: Prevention is important. Do it. You’ll never be penalized
with a co-pay or a deductible for doing things that we know you under-utilize
anyway.

The account itself, be it a health savings account or a health
reimbursement account — the only difference being in the health reimbursement
account, the money does not travel with the employee; it belongs to the
employer — it’s a notional account. We track it on line just the way your
mutual fund or banking statement is and you are able basically to roll over
those monies year after year and mitigate, or totally eliminate, that thing in
the middle called the bridge. The bridge is money that you reach into your
pocket for the first time pay for. Typically, we like to see the ratio of the
HRA to the bridge to be two-to-one.

The message here clearly is not cost-shifting but cost-empowering. If we
just wanted cost-shift under consumer-driven care, we’d clearly say don’t do
it. You can just do that in a simple PPO and raise the deductible to two grand.

The bottom line here is: How do you spend the first thousand dollars of
your own or two thousand or three thousand dollars of your family’s money,
knowing that if you roll it over, you can mitigate or reduce out-of-pocket
expenses?

And by the way, the way you can do that is get more interested in behavior
change and in evidence-based medicine.

And then finally, traditional health coverage at the top looks a lot like a
PPO with an out-of-pocket max.

But all of these push for greater transparency of the total price of the
service — not the discount, not AWP pricing of a drug — but what does a Z Pak
actually cost and what are your alternatives, less, brand, generic and
over-the-counter?

Now on this slide, I’ve taken what essentially all of us learned are the
imperatives to deliver value health care, things that the Institute of Medicine
told us about five years ago and said: How do you reduce the need for health
care?

The first thing you do in this country, or maybe as much as 30 to 50 percent
of all physician visits just don’t need to be seen, is you emphasize behavior
change and pay for it 100 percent out of the prevention bucket.

I personally testified with Secretary Snow when the regulations were
released on health savings accounts. We brought in eight of our employers to
talk with IRS and Treasury.

It’s important that employers be allowed to, and encouraged to, pay for
tobacco cessation and weight cessation out of that prevention bucket. Why?
Because they’re the leading causes of health care costs, morbidity and
mortality.

So if you’re able to do that, and you’re able to drive new technologies to
reduce the traditional face-to-face doctor’s visit, which as far as I’m
concerned it’s the 1950s-style medicine that we practice in the 21st century
inasmuch as 30 to 50 percent don’t have to have a face-to-face, we can drive
new technologies like web-based consultations for reimbursable doctor’s visits.
Makes a lot of sense. Keeps the employee on the job — I don’t miss half a day.
By the way, it’s a great satisfier for both doctors and patients.

If I want to reduce inappropriate and inefficient care, who better to do it
than the 250,000 claims reviewers at Lumenos called “the consumer?”
It’s not uncommon for us to get calls back from our members saying, “You
know, I’ve been seeing my doctor for years for allergy shots. I actually never
see the doctor — I go in and get the shot.

And here I’m billed for a 45-minute doctor’s visit when really I just saw
the nurse and sat in the waiting room. Oh, interesting.”

You would never get that from looking at claims reviewers with predicted
modeling and ICD and CPT codes. So the reality of what happens in clinical
medicine is reflected back to us.

And then finally, if less than 50 percent of the time you get the care you
need, what better way to actually pay patients to get it — literally pay them
to optimize their evidence-based guidelines with curriculum that we call it?

At Lumenos, we do that. We have three incentives. We put additional cash,
the employer’s cash, back in the account for filling out a health risk
appraisal — $50 to $200. If you’re in that six percent that consume 70 percent
of the employer’s health care dollar, we’ll pay you $100 to $200 just to sign
up with a health coach, and six months later when you graduate after mastering
the competencies of chronic disease, we’ll put another $200 in the account.

We underwrite that. We look at how that model — and essentially all of our
employers this year instituted those based on the evidence that we’ve provided
them over the last two years.

Now, if you could suspend reality for a minute and all the things that we’ve
been talking about at the Public Health Service and IOM for the last 10 years
about the 50 percent of health care that’s due to personal health behaviors, at
minimum, and the 35 percent waste and inefficiency, I kind of scratch my head
and I said, “Why in the world would we go bang on hospitals and doctors
whose margins are flat to declining to get rid of waste and inefficiency when
that is something called their profit?” It didn’t much sense.

When Herb Kelliher started Southwest Airlines, he didn’t go over to Chicago
and the CEO of United and say, “You know, I’ve got a better idea. Rather
than an inefficient use of flying people to hub and spokes, why don’t we just
put up a billboard between Houston and Dallas and fly the plane for 29
bucks?”

My idea of the future of health care is that bright physicians, bright
hospitals, and patients seeking value will come up with more Herb Kelliher
solutions to health care.

What essentially what we do is turn those 50 and 35 into demand for change
from the consumer. So if your doctor orders a lab test because they just can’t
find it on the medical record which comprises 20 percent of all lab tests, get
out of there. They should have an electronic medical record. They should never
lose something on a piece of paper — can’t get it from Fred down the hall
because he just doesn’t happen to be in.

These are the drivers that in a consumer with their own money, they will see
the 50 percent due to their own personal behaviors and the 35 percent due to
waste and inefficiency and they will drive for other solutions from the
provider community.

The role of the health plan in consumer-driven health care, therefore, is
very different in many ways. In some ways, it’s similar, but by and large, it
is not to change physician behavior through the medical director; it’s a title
that I do not have and I happen to believe is an oxymoron.

Medical directors do not change physician behavior — they never have, they
never will. I had more clout as a colonel in the Air Force with a $4.3 billion
budget and a captain pediatrician was still going to prescribe what she wanted
to because the patient came in in an eight-minute visit going to seven minutes
because they needed a little breather before their next patient.

Try as I might, I could not keep drug detailers out of our clinics; that’s
something called the First Amendment. But it was something I would have liked
to have done because it was money poorly spent.

Ironically, if $2,000 is overuse, misuse and under use, under the misuse
and under use category, there’s a lot of opportunities to drive out unnecessary
costs with electronic technology. Uncoordinated visits and tests. Duplicate
procedures. All of these type things that are done in the sense of “I want
to either cover my proverbial you-know-what or I just can’t seem to find it on
the record” goes away if the consumer can connect why it’s important for
him or her to have a doctor who has these and why they need to be able — just
as I brought my PowerPoint presentation on a key disk — to take their personal
key disk and plug it into Dr. Parkinson’s office the next time I go to visit my
brother in Cincinnati.

We have a strategy, we have tactics, and we have execution. The point of
this slide is to say that through the good work of Dee Eddington and others, we
know that risk factors for this — morbidity, mortality and health care costs
— we don’t even have a standard way for capturing a data element for smoking.

Until and unless we get serious about data standardization around the
things that really matter in health status as well as in health care costs, we
will not make any progress in me being able to sell EHRs, PHRs, EMRs, EQRs,
whatever, to the consumer.

I have three observation slides here; there’s food for thought for your
conversation. I have now five different companies with five different vendors
with on-site HRAs — health reimbursement appraisal — and behavior change
programs. All of them want me to “integrate electronically with them”
when I don’t have a common data standard. Impossible, and you won’t do it for
one client even when we’ve got 90. You can never make it profitable.

The entire model of consumer-driven health care on this slide is around the
competencies that we put around the consumer. How does a consumer, or should a
consumer, seek information?

So to Cynthia — I was talking to her earlier — is that different for an
Hispanic female than it is for an African-American male at the age of 19? I’m
not sure we know. It should be available on line, over the phone, in Spanish,
on New Year’s Day, 24/7, because that’s when health care happens.

Secondly, you’ve noticed the word “marketplace.”

We happen to believe that networks are a creature of managed care. They
don’t add value to the doctor or the patient. They add a lot of value to
employers and steerage on health plans.

We create a marketplace of all doctors that are in practice, a usual price
of 85 of the most common visits, procedures, diagnostic lab tests, and the
discounted prices in that zip code. It’s your money, it’s your choice — see
whoever you like.

But most importantly, technology and accounts do not change behavior. You
need personal assistance, and you’re not going to get it from the chief of
internal medicine at Baylor who says I’m running the patients so fast through
here, I can’t understand the three medications they’re on for their
osteoporosis, and by the way, Mrs. Jones thought they were three different
drugs; it was the same drug by three different names from three different
doctors.

So we have a real challenge being able to get the consumer in the middle.
And my plea is everything we should do in health care should be looked at
exactly the opposite as we looked at it the last 25 years — through the eyes
of the patient and the consumer, which is the good work that David Lansky,
FACCT and other groups like the Kantor Foundation have brought to us.

I don’t know as much as what’s on a med par data spit-out; I want to know
other patients who have colon cancer who made the choices I made. Did they make
the right choices, and where did they go to get their care?

So my first group of considerations is current provider-centric data
requirements do not capture critical consumer and patient outcomes. Fifteen
diseases make up 90 percent of our health care costs, more premature morbidity
and mortality in this country, and yet there is no ongoing effort to define for
a diabetic, a heart disease patient, a congestive heart failure patient, colon
cancer, osteoparotic patient, what are the simple bumper sticker competencies
that reflect what the patient needs to know, do and ask about in concert with
their doctor? They’re not there.

We essentially do that through a company we work with called FutureHealth
to take evidence-based guidelines and translate them into consumer pull. But
wouldn’t it be nice to have those as standardized data elements so I could
frame whether or not a diabetic was a diabetic or a diabetic in terms of the
skills they needed? We don’t have anything going there. Not to mention
functional status and statuses, and satisfaction with care.

Patients want to know these things, and I don’t see them anywhere on the
architecture. Perhaps they are; I’ve been aware from your strong efforts over
the years.

The second thing is multiple vendors and proprietary systems make data
integration even in rudimentary PHR impossible. Doug, we have many of the
functions you have in Lumenos; we happen to use WebMD.

We spent $35 million on our technology five years ago.

We upgrade it with new and different tools. But it’s all employee put in
and, heaven forbid, I could go to PAMF and just take my key disk and plug it
into Paul’s office practice; it’s just not there.

So while it’s good, and while you can print it off and while I can give you
the log-in if I’m sitting in

Baylor for you to be able to look at my records, realistically I’ve got 12
minutes to see the patients. Well, the chief of medicine said I love this
program; I wish all my patients were on it. Please print off the cost of all
these drugs and show them to my 2,000 doctors because they don’t know the price
of a Z Pak, either. It will help them in the argument to do better
evidence-based medicine.

So we have numerous health risk appraisals at the work site — they’re not
integrated. So you either got to do it again. It happens to be that behavior
change supports expressing risk different ways, so I can do that.

On-site clinical and occupational medicine interactions and interactions
with other physicians — there’s no transportability across the good work that
you do. And of course you guys know across various stages of care.

Quality issues — I happened to put together two what I call “spider
webs.” They’re all the sources of quality currently out there that people
use to profile George Washington University Hospital or other places. You all
know this better than I do, but the gold standard at the 1 o’clock position
which everyone keeps talking about is risk and cost adjusted outcomes, and I
bolded outcomes by facility and provider.

As I said before, I don’t think we’ve defined outcomes right for the
patient. The patient’s outcome is not always cure; it might be functionality,
it might be quality of life, it might be to feel confident about my disease.

So outcomes right now are being defined, I would say, in many cases by the
health information industry which, while good for the industry because it
codifies the use of claims data as the gold standard, those of you who know
that a billing office is there to maximize reimbursement, not to capture
quality, and we run a great risk of using that data as the primary determinant
of quality.

So the gold standard now people think is MEDPAR all state payer data,
purchasing consortia, whatever.

But I would say the 1 o’clock position remains largely undefined, at least
for the 15 chronic conditions that make up 90 percent of every employer in the
U.S. government’s health care costs.

And now this model is being projected down to the individual Dr. Parkinson
level. So I want to know essentially, using claims data and tiered networks and
pay for performance, who’s the best doctor who does X, based on 10 episodes
over two years of proprietary data that you can’t see but trust us it’s good
and it’s risk adjusted, when realistically what I want to know, if I’m paying
for someone’s health care at the 1 o’clock position, is: Do my patients at
Intel know, follow and own the behaviors and best care practices for their
conditions?

I can’t get that from claims data; I can’t even get it from medical records
of you.

I’d suggest to you there’s some good work we might be able to do here in
terms of defining some standards that can help us there.

So my perspective on pay for performance, which is a buzzword and of course
every three years in health care we have buzzwords — well, the buzzword now is
pay for performance. We kind of say at Lumenos, who really has to perform? Is
it the doctor who orders the tests or the patient who has to understand why
they have the condition, what led to it and whether or not the tests are good,
bad or normal, you know, et cetera?

So that’s why we pay the consumer for performance, because ultimately at the
end of the day, they’ll have three doctors before they survive or not with
their colon cancer. We need to get them to own it. We believe that cash is
king, so with all due respect, discounts or premiums or tee-shirts or whistles,
no, it’s the great common denominator — so put another $100 in the account.

And the measures that we use is what we call “mastery of disease
competency” at graduation. It’s hard to get your kid’s asthma under
control. You have to work at it for four to six months and when you understand
that peak flow meter and you basically have the steroid inhaler on its way et
cetera, you will get another $200 from Northrop Grumman. It makes sense to
them. It makes sense to us.

Now what we’d like to be able to do is to post on our website at NCQA who
are the doctors that cared enough about asthma to go out and get certified or
credentialed, to look at a few charts to see whether or not they codified the
things you should do, so that when they go to a Lumenos website and pull up all
the doctors in Denver, Colorado, who most likely am I likely to get mastery of
my asthma and get my $200 fastest by going to see Dr. Parkinson?

As I say to people, it’s a common misconception that all internists want to
do is take care of diabetics and all pediatricians want to take care of
asthmatics. So we have to be able to have a way to do that, and by the way,
I’ve shared these observations with NCQA. Greg Paulson’s an old professor of
mine from GW, so it’s fun.

And the last one, of course, is office-based quality tools and practices.
So if you have an electronic health record or EMR in your office, I want you to
get credit. I want to promote to our consumers that everything else being
equal, go see a doctor who has one of these because 20 percent of the time you
won’t pay for repeat lab tests because they got it.

Pay for performance — interesting surveys done. The consumers don’t
necessarily believe they need these. I’m not sure you should pay more for
doctors who do well. I already thought I was paying a lot for my doctor, and
besides, he’s a good doctor; I wouldn’t be going there.

And early experience in rolling out some of our current models are little
bumpy roads. United HealthCare has just rolled out their system in St. Louis
for the first time at the individual doctor level and 40 percent of the doctors
aren’t there. We don’t have enough data and I can’t get the data from the (?)
denominator.

Trust us — it’s normal, and why did the internist get it but the five
doctors I refer to, all of whom I’ve used for 10 years, didn’t get it? So now
you’re disrupting my specialty referral practice.

Simple sound bites are often simple, and I think that we run a risk here of
codifying some practices that have not yet been subjected to really
evidence-based review.

So my second set of observations — consumer-driven care will drive the
quality movement and HIT PHR faster than other benefit designs. My money — I
don’t want to pay again when I don’t have to. I can connect with them, why an
EHR or a PHR is in their economic interest, gets the money faster and helps
improve their health.

That’s a home run.

Connectivity and transparency are valued and will make consumers vote with
their feet and move market share. And pay for performance will only work if
consumers know and understand outcomes they are differentially paying for that
matter to them.

Consumer-driven care will destabilize the medical-industrial complex, which
is why I’m so excited about it. There’s a lot of things that need to be
destabilized.

When we get a 93 percent generic substitution rate with no tearing, no
co-pays, no closed formulary, it’s because the doctors have always been saying,
you really don’t need the copycat drug; the generic works quite fine.

But what that means to the R&D pipeline of big pharma is: Don’t turn out
too many copycat drugs — which have made up 90 percent of your drugs for the
last decade.

Consumers will be rigorous, particularly with well-meaning consumer-driven
health plans that say: Ask the hard questions, be prepared when you go in, and
make sure that the technologies and devices that the doctor’s office have
support evidence-based preventive-oriented care.

Surgical hospitals, centers of excellence, all these innovations —
innovations should flourish, not be stifled. And I’ve lived inside Washington
long enough to know that the government oftentimes does not encourage
innovation as much as stifle things that are promising because of political
forces. Hidden and shifted costs will become more explicit, and the consensus
of best of breed private and market-based functions versus the public or safety
net will occur.

This is where I think the Committee needs to spend some of its time.
Whenever I go through Union Station, I pass this lovely plaque on the wall of
the train station that commemorates the time in the 1800s when the government
finally said it’s our job to determine what gauge of rails will run from New
York to Los Angeles, because in the absence of that standard rail, we will
never have a transcontinental railroad.

Until and unless this effort defines the gauge in the rails, I really will
not be able to have any considerable impact beyond what Doug and I have talked
about today about transporting personal health information from the work site
to the hospital to the consumer-driven plan.

I recently met with the CEO of one of our companies who is the largest
single laboratory test manufacturer in the country and suggested that more
testing may not be better, particularly when I see and pay for every test. So
if your business model is to do more in health care, beware of consumer-driven
health care, particularly when we do more to less effect than any other country
in the world.

Consumers will see that very quickly. Genetic and the biotech revolution
everyone talks about will be tempered by more sophisticated decision support
tools. I’m not direct of direct to consumer advertising if the consumer has to
pay. I’m very fearful of it as the last decade of drug direct to consumer
pharmacy ads when I didn’t pay, what it drove.

Connectivity and technology, the patient can provide a joint visibility and
ease of testing will be more valued. You can get market share if you can make
sure that your lab is connected to your personal health record connected to
your doctor’s office and I can see it on Saturday, not wait three days later to
see whether or not you call me back.

And consumers will become forces to remove legislative, regulatory and
usual practice barriers quotes “We’ve never done it that way.”
“I can’t show you the price because we have MFN pricing with X-health care
plan.”

The next generation of HIT must include integrated health and productivity
management. There will be a press conference May 4th at NASA. The Institute of
Medicine, a panel I’m serving on, was asked to help NASA with its health care
costs, health and wellness programs, because they realized they’re all
connected. But in reality, they’re in still bites.

This is a graph out of a report that’ll be coming out, Dee Eddington and
others, that whatever we do in health information technology has got to be
almost performance and productivity linkable as well because the data strongly
suggest that for employers, be they public or private, that health relates to
performance.

Finally, the next generation integrated health performance model will
require integration beyond medical care. Uniform Federal or public sector data
standards are necessary for widespread PHR adoption, portability and
connectivity.

We actually urge our employers to come to Washington and monitor very
closely David Brailer’s work to make sure that the private sector voluntarily
comes up with a common standard. If they do not, you must force legislation
quickly, because every month that passes on the vine, you’re leaving health
information technology unused, because I cannot build the private sector
infrastructure in a business model to adapt seven different HMRs, or I saw in

David’s presentation 75, that have non-standardized terms. I’ll never get
there, and I can’t help the CEO of our 90 companies get there, either.

So we drive legislative foment, saying that you’ve got to be able to watch
those things.

Consumers can drive the personal health record adoption once they
understand the value to them personally, not the health care system. There is
no system. It’s my wife. Today she’s getting a mammogram. What does it mean for
her?

HIT and PHR infrastructure is a public good. It’s like the plaque at Union
Station. But only pieces of the plaque need to be built — the rails, the gauge
of the rails — but I want competition on the track. It is not proprietary. And
remember Union Station.

So with that, I apologize; I went a few minutes over — but hopefully, some
perspectives as one vendor deep in the trenches of consumer-driven health care.

Thank you.

DR. COHN: Well, thank you both for some very interesting testimony, very
different, too. Comments, questions, from — Paul?

DR. TANG: Thank you both, the panel members. I have some questions for
Doug.

And I don’t remember exactly when your personal health record went on line.
Some of the things that you mentioned were sharing with the provider and
imagining — maybe I’m reading between the lines — so the patient agrees to
share with a specific provider, and when the provider logs in to your site,
they get to view that patient — is that how that works, or —

MR. FONSECA: That’s correct. And we launched the personal health record
when we reengineered the site back in 2002.

DR. TANG: And then you said you’re early on, or maybe haven’t yet
integrated with a provider CHR?

MR. FONSECA: Correct. We have not.

DR. TANG: So the final — I’m sure you’ve done a lot of thinking about this
— the .3 percent of your members who are using this, how come?

MR. FONSECA: Well, we struggle with that one quite a bit.

We actually have very good success on the physician side. We have over 40
percent of our docs are using the site on a regular basis.

You know, really I credit it to a lack of promotion. We’ve done a really
poor job of promoting the website. I speak at several groups, and they’re
consumer groups based on the particular product they represent within Blue
Cross, and when I start covering the website, for the most part it’s all news
to them, it’s all new.

So I think I’d say 2002, 2003 and part of 2004 we did just no promotion of
the website. Towards the end of last year, we actually got a couple of
television spots. And this year, we’re running a contest to win a mountain
bike.

It’s really about promotion, and I think looking forward, it needs to be
not driven by the health plan; it needs to be driven by the employers and it
needs to be driven by the provider community because I think there’s a benefit
to everyone that’s in the space.

DR. COHN: Gene?

MR. STEUERLE: I have two very separate questions. Maybe I’ll separate them
by Doug first and then Michael, if I can.

When you talked about — remember, I asked you during your talk, I said,
who provides the information? You said only the consumer provides it. But then
you gave one example which wasn’t, it seemed to me, quite correct, because you
said, in fact, the consumer can link up to a prescription drug listing, a drug
listing that was actually on the provider’s — no, I guess on your records.

MR. FONSECA: Correct.

MR. STEUERLE: On your records. Now, to me, what that’s saying is the
consumer over here has a personal health record and over here you have a tiny
— let me call it another health record, electronic health record, which can be
converted to a personal health record, if I could finish up, which can then be
linked, or pulled in, into this individual’s personal health record.

And what the question for you is: Thinking along that type of model, are
there other ways where we can think about not personal health records in a big
abstract sense but personal health records are drugs taken, are shot records,
or selective items where somehow or another if we address each of these
separately, we can actually enhance — I mean, of course, it’s the electronic
health records, too, but are there things we can do in these areas where you
could find it then easy as an insurer to say, yes, we could — if that was set
up in a particular area, we could

actually figure out ways to link those particular pieces. They might not be
all the pieces Michael wants, but different pieces, one at a time, into a
personal health record?

Does that make sense, because you are getting —

MR. FONSECA: Yes —

DR. TANG: — information from the outside —

MR. FONSECA: Right. We’re actually exposing claims history. I mean, we’re a
payer, so we have financial information. We have no clinical information at
all.

But we know what claims we’ve paid for from a drug perspective and what
doctors you’ve seen that we’ve paid for and things like that.

You know, to your question, can we do it? Yes. You know, by design, we’ve
taken very small steps because we’re very sensitive to privacy and security
issues and, you know, quite honestly, as you can see by our numbers, we haven’t
really got traction yet from our member population.

So those kinds of additional features and capabilities are very valid, but
we would like to see that being driven from the consumer and from the physician
and we’re not getting that at this point.

DR. TANG: Can I continue?

DR. COHN: Yes, sure.

DR. TANG: And, Michael, for you — I’ve been involved with a number of
these consumer-driven groups for some time and there are two criticisms. I’m
sure you’re quite familiar with them and I don’t necessarily agree with them
but I’d like to hear your reaction to the extent to which this is going to
drive the marketplace.

The first criticism is: Well, this is nice that the consumer’s involved
with whatever it is — $2,000 or $3,000 worth of care, but you take total
health expenses in the country and divide it by a household, that’s $15,000 per
household. And so we’re leaving out a vast array and so therefore it’s not
really going to make a big difference. Maybe it’ll make a difference, but in a
small pile. That’s the one criticism.

The second one is that, well, if we get into more consumer-driven health
care, we’re going to leave to the side all the people who are less educated,
less capable of dealing with the technology, so on and so forth, and to some
extent we’re going to get more unequal health care because the people with
higher income are going to demand more and the people with more income are
going to demand the cash. And I’m just wondering — I’m sure you’ve heard these
many times, and I’m just wondering how you respond.

DR. PARKINSON: I think the last time I responded to these was in the Russell
Senate Office Building about six months ago.

The first one is that, because most people consume less than X-amount of
dollars, that it’s not a solution to kind of the high-end health care costs.

The people who like this plan the most are the people with high health
expenses and chronic disease. Now, that’s counter-intuitive, except if you
think about the people who are most frustrated with the status quo, it’s the
people who use the health care system.

I was on the Robert Wood Johnson National Health Care Purchasing Institute
for three years, and unlike any other survey we ever did at RWJ that I’m aware
of, rather than going out and asking experts in cancer care and asthma care and
diabetes, they talked to asthmatics and diabetics and osteoparotics and they
basically asked them some simple questions:

Do you understand what you should be doing? These are insured people; they
got health care. Less than 50 percent of the time did they understand what they
were supposed to be doing.

You know, do you do the behavioral things you’re supposed to be able to do?
No, I don’t.

Did your doctor talk to you about these things? Eighty-five percent of the
time, no.

When you show that to the physicians, they go, of course not — a 12-minute
visit, and when I try to hire a nutritionist, it’s denied by the big health
plan.

So what’s interesting to us is we go out actually in optional business and
we try to get the sickest people in the plan immediately. Why? Because if you
believe the 50 percent number and the 35 percent waste and inefficiency, that’s
where the cost savings lives.

So unless you get sick high-dollar patients into these plans, you don’t
meet the employer’s objectives.

So we go in and only get what we did in the HMO movement where we went in
and said we advertise with sneakers and jogging shoes, you know, in jogging
outfits, and we get the young worried well and we get a full capitation rate,
which is how we built a lot of the big behemoths in health care today, was we
got non-users with a full cap rate.

What we essentially say is: Give us the sick people and let us pay them
$100 for filling out a health risk appraisal so they understand their health.
And by the way, they don’t have to do it on line. We’ll do it over the phone in
Spanish because we’re open New Year’s Day and every weekend in January. Okay?
That’s when they have time, not when we have time.

The second thing is, for that 70 percent consumption, six percent that
consume 70 percent, we’ll give them $100 just to say yes, I’ll get in the
program.

The problem with disease management to date — by the way, the reaction I
get from doctors when we talk about disease management, they say, that’s not
why I went to medical school. No, no, no, now you’re a company that’s based
3,000 miles away to do disease management when you crank out your 30 patients a
day. It’s crazy.

But at any rate, what we pay them is another $100 just to get in the
program. Forty percent of everybody at Lumenos last year who came into a
chronic disease management program came in because it was their idea. They
self-identified. That means I didn’t have to do PBM claims and data mining nine
months later when I got a pattern — Mrs. Smith didn’t understand Jimmy’s
asthma because she had three ER visits. She already had an ER visit last year
— just ask her. Give her $100 to get Jimmy in the program and then $200 if you
graduate because it’s hard to do those things.

So you get deeper trend mitigation right out of the chute when you get
people on multiple drugs, multiple doctors, don’t understand their care. It’s
important. Twenty-five percent of our clients of the 90 are full replacement.
There is no selection when I got every single person in the plan.

Forty percent of all the RFPs in our pipeline right now are full
replacement.

So the notion that these plans only pick out the young and the healthy and
the non-users —

MR. BLAIR: I missed some of the terms. Forty percent of the RF —

DR. PARKINSON: Oh, requests for proposals.

MR. BLAIR: Thank you.

DR. PARKINSON: Sorry. So they’re coming in and saying, you know, the
evidence that we see is so positive on these, even in full replacement cases.
And these are companies like Aetna and United, much bigger than ours, that we
don’t want to just offer as an option with three or four other menus types of
plans. We’re going to go ahead and just do it full replacement.

Now, the full replacement could be a health reimbursement account, in which
case you’re getting the consumer engaged with the money, but if they leave,
there really is no real money in the account, but they can roll it over. The
rollover is another key feature to the first part of your question.

I was in Orlando with CFOs from 20 hospitals and then I spent Friday all
day with the University of Wisconsin in Madison, the hospital and the medical
school and the executives. What they begin to realize on the hospital side is
that if I roll over money year after year

after year, and 60 percent of the members in our plan roll over money, they
didn’t spend all that money in the account, so that next year my out-of-pocket
is less, and that $2,000 goes to $4,000 and the $4,000 goes to $6,000, to
$8,000, particularly in an HSA.

All of those things that people said, how much of health care is in the
first $1500? You’ve got $13,000 in the account.

And it’s very important to you — well, how much is that ACL repair of my
knee at the surgical center versus University of Wisconsin Medical Center —
$26,000 versus $13,000? And under the IRS regulations, under HSAs, I can buy a
much higher deductible than the $5200 that the law says has to be a minimum. It
doesn’t say a maximum.

So you can begin to see that both the behavior change in the high users is
already happening. They’re coming in the plan and they like it.

Number two, with the rollover feature, the dollars in the account grow.

And the third thing I’ll tell you anecdotally — I’m a big believer in
evidence, but anecdotes are important — even when we have very sick people who
get in the hospital, who are well into the traditional health coverage, they’re
looking at their bills very differently because before and after they’re going
to be paying it.

Next year — remember — the account starts all over again.

So we actually got a call from a woman getting a bone marrow transplant in
a large academic center not too far from here who said, “This bill is
wrong. There’s $480 in here my oncologist said was going to be funded by a
clinical trial.”

Now, her transplant was going to cost a lot more than the $2,000 in her
account, but she was much more sensitized now to that.

Now, she might have done that under an old first dollar coverage HMO or
PPO. I don’t think so. And what we’re seeing is these consumer behaviors are
continuing even when they’re into the traditional health coverage piece as it
relates to that.

While it’s early and I don’t have five million lives to be able to show
you, I think if you talk to the larger carriers with even more people than we
have, including their own employees, what was very interesting to me is United
Net — now, the two largest plans in the country put all of their employees,
100 percent, on an HRA product. They didn’t give them an option. They said this
looks promising to us for our own health care cost containment.

DR. COHN: Okay. Paul, I think you’re next. Others? Okay, Paul.

DR. TANG: Going back to Doug, so your hypothesis in terms of the low use is
that perhaps you’d like to see consumers and physicians support this more.

MR. FONSECA: Employers.

DR. TANG: Employers and physicians.

MR. FONSECA: Yes.

DR. TANG: So let’s turn that around. This is a business model discussion.

Would a plan be willing to — so let’s say a provider does have one of
these PHRs, and I think you’re right because it’s people signing up with their
provider, would the plan be willing to cosponsor that if it were done by the
provider or employer, let’s say?

MR. FONSECA: Absolutely. We’re working with — unfortunately, the PHR is
not in the product right now, but, you know, as Mike mentioned, pay for
performance, we have one of those as well going on right now, and that’s
certainly something we could look at adding it in.

DR. COHN: Mary Jo?

MS. DEERING: I have a question for each of you. Maybe I’ll start with Doug.
And it does get to that low use.

I think you were here this morning when Cynthia was talking about, you
know, the consumer research that we really need to understand how these things
fit into real people’s lives. And having been the recipient of very helpful and
very revealing information from our user testing that told us there were a lot
of things about our PHR that just weren’t right for people — and I’m just
making this as an unsolicited observation — is that my experience in even
looking at most of the PHRs is that regardless of how much research supposedly
has gone into them, I think we are probably still far from understanding what
people really like about that and yours is all patient data entered, ours is
all patient data entered.

I just suspect that, you know, HealthAtoZ and all the rest of us could pool
our resources to do a lot more in depth research around that patient data entry
interface and what we’re asking them and in what sequence we’re asking it — I
mean, this is a bunch of nitty-gritty stuff. Do you have any statistics on how
many people start to register and to fill it out and who drop off?

MR. FONSECA: No, not at this time.

MS. DEERING: That might be an interesting statistic, how many people enter
in and start to do it and just say, oh, to heck with it, you know, and then
walk away.

DR. LAKHANPAL: At some point, I’d like to answer that whenever, you know —

MS. DEERING: Okay.

DR. LAKHANPAL: — it’s appropriate. But we have something that I’d like to
— I’m Raj Lakhanpal.

MS. DEERING: He’s from HealthAtoZ.

DR. COHN: Please introduce yourself.

DR. LAKHANPAL: I’m Raj Lakhanpal. I’m a surgeon and an emergency physician.
I was a surgeon in England and an emergency physician in the U.S. I’m one of
the founders of HealthAtoZ.

At some point I’d like to — you know, we’re with Blue Cross/Blue Shield
Rhode Island and with some other Blues and some employers as well. We’ve had
some experience with the PHR, would love to present that to you at some point
during this discussion. I’ll hold off. If you want me to do it now, I’d be
happy to do it now as well, but —

MS. DEERING: What would you present?

DR. LAKHANPAL: I mean, I don’t want to intrude.

Specific here at one point, that multiple focus groups on the personal
health record that we had, and based on that, we introduced a thing called a
quick start which the member in about three minutes can capture emergency
information into the — and then we send them reminders. So it’s not a
50-question questionnaire. It’s five steps. And that has helped, you know.

It’s unfortunate it’s not helped here, but it has helped a lot in the uptake
of the PHR.

Other comment — you know, as we’ve evolved, we look at the PHR as a piece
of a personalized health management solution. So you talked about HRAs. We
integrate that with the health risk appraisal — again from Dr.
Deerington’s(?), and there’s a data feed that goes into the PHR, and then based
on that, we generate reminders. Your HealthAtoZ generates rules-based reminders
as well.

So the question was raised about the business case. Again, as an
entrepreneur, we’ve tried to figure out what is the business case? Why would
somebody buy this product, whether it’s a health plan or an employer, or, you
know, a hospital system.

And I think the business case is in the consumer-directed health care. I
mean, that’s where all consumer-empowered and then leading to consumer-directed
health care. Pay for performance is another area where when we go out, the
health plans like it when they can offer it to their physicians and say, look,
Dr. Smith, if you leverage this, your patients will be reminded that they need
to — especially in primary care — they’ll be reminded that they need to get
their children’s immunization shots or if they are elderly, or not elderly but
if they are in an age group where they need hemowax(?) vaccine, they can get
that as well.

So that’ another revenue — see, I want to also talk about something that
when Blue Cross selected us, I was fortunate enough that I did a number of
focus groups with IBM and Blue Cross with their physicians. Blue Cross is
paying for it, but the physician has to become the driver, and the physician
has to see value in the PHR to be the driver. If it’s added work for the
physician, she or he will not do it.

And one of the things at that time, I remember we were talking to one of the
board members of Blue Cross and he said, look, I send my patients to different
specialists. I never know what medicines they’re on. You know, and I could send
them to four specialists. So that’s how they’ve started the integration with
the claims data, you know, so that the physician can see that.

So there’s another very innovative thing that’s happening right now. Again,
we recently signed up one of the employers and the first company they selected,
they have multiple groups — it’s a D.C.-based employer, or Virginia-based —
they selected coal miners.

And the first thing was — hey, nobody going to use the personal health
record there, which is true, you know? But then they surveyed them; they found
that 52 percent were on line.

But what they’re doing is they’re taking Dr. Eddington’s HRA and their print
HRA. They’re scanning into the personalized health management system and
they’re forwarding the results to the physicians. So it’s not being leveraged
for the consumer to come there and, you know, build their own home page and
stuff, but it’s being leveraged to disseminate information to the physician
based on obviously the member’s or the employee’s permission.

So that’s another way of doing it.

DR. COHN: Okay, thank you.

MS. DEERING: I just want to follow up if I could with my question to
Michael, because it sort of led in from at least the first question and it got
to your passionate plea for looking at data standards for prevention an chronic
disease management.

And I just wanted to sort of pick that up and let it resonate a minute, and
since we have many people in this room who have been up to their eyebrows in
the data standards field, do you see any particular barriers? Are you aware of
why those have not been picked up yet? Do you have any factors that you could
suggest that are likely to help push the standards world in that direction?
You’ve got some interesting people around.

DR. COHN: Good set of standards, yes.

DR. PARKINSON: Oh, I understand. That’s why I want to share, obviously.

But I sat there gog-eyed with everybody else over in the Convention Center
— what was it, eight months ago? — when David Brailer had the roll-out and
everybody but George Bush was there, all the way down to Cabinet Secretaries.
And I said, finally, we’re moving!

And then, you know, I saw McKesson embracing Cerner embracing IBM Health
Systems embracing everybody, and I said, I’ll believe it when I see it.

And I really hope that what David said at that point was that we’re going to
hold the feet to the fire and make sure that we get implementable common data
standards that are not owned by McKesson so that the HRA that you get through
Cooper Clinic in Dallas that they do for employers in the Dallas area, when
somebody says they’re a smoker of a pack a day or that they don’t exercise 30
minutes a week or that they’re stressed out on their job as well as whether or
not they’re on insulin or metforman, that they’re on track to get out there
very soon because until they get commoditized into a product to ask the
employer — with all due respect, Doug, to ask the employers to push for PHRs
— I’m not sure what to ask to push for, because my employers are all
multi-state employers and the average doctor’s practice is four to six doctors
and they don’t have it, you know, with the exception of PAMF, they’ve got a
wonderful system, but I can’t plug into that system.

I personally believe there’s nothing wrong, by the way. I just want to make
a comment.

So in other words, what I’m saying is, whatever that deadline is, I hope to
the hour that the Feds are on top of them saying, okay, now it’s become a
public good; we’ll move it into legislation, and we will come forward with
things that look like the rails in the tracks, you know, at Union Station,
because I do think that’s a huge barrier to broader implementation.

And jokingly, I tell employers all the time — I regularly have CEO
meetings with these big companies — and I say, when I came here today, I
brought my computer, and it’s got a plug that’s got three holes on it. No
matter where I go, I know I can plug it into an office, there’s three holes.
Until I can say that for whatever you do at your clinic, or the primary care
clinic downtown, or the ER across the country, you have a problem in your
health care costs. But don’t ask McKesson or GE or IBM to solve it, or for that
matter, David Brailer. It’s an economic imperative that we as a country solve
this because it’s coming down on your backs because 20 percent of lab tests
have got to be repeated because the doctors don’t have — and there’s no
economic imperative right now despite banging on the door.

What I like about — by the way, fat-fingering in data, you know, there’s
nothing wrong with it; that’s called ownership. If I take the time to do a
12-minute HRA on line at Lumenos and then I talk to a personal health coach,
for the first time ever I own the fact that I really don’t know what my A1C is
and I don’t even know what it is.

So that’s not necessarily bad. It’s just that — and again, Doug, we do the
same thing — sure, I can print it off and take it to my doctor’s office and
the doctor has a pal, an internist in Seattle, he says, “Mike, I get 40
pieces of paper a day from health plans,” he says, “and it’s all pay
for performance. I take them right to the end of my desk and drop them in the
trash.” He said, “I don’t have time for that. Besides, I think I’m a
good doctor.”

In reality, where the rubber meets the road, outside of some large
integrated systems, they don’t have time to even read it when you show up.

So I think, Mary Jo, you know, if it was eight months and the eight months
is up, okay, now becoming a public good –let’s move on with it.

DR. COHN: Yes, it looks like Steve has a comment.

MR. STEINDEL: I have a question and a comment, and actually the comment
derives from a second question I was going to ask which was what Mary Jo just
asked.

Michael, this is a view. You describe very highly motivated patients who
are involved with your product and the companies that are with it. Do you have
any idea of how many of them are using personal health records because what
we’ve learned here is highly motivated patients tend to use them?

DR. PARKINSON: Just as an aside. There are two books, whenever I talk to
doctors and to hospital administrators I recommend we reread.

The first one’s “Death and Dying,” because a lot of the concepts
about managed care are dying and we’re kind of going through this concept of
how do we get over it, you know? We got anger, denial, bargaining, acceptance.
Let’s get on to acceptance and realize that the world is going to revolve
around the patient, the consumer, for all the good works that David Lansky and
others have done over the last 10 years.

But the second book that I urge them to read is called “The Tipping
Point.” Anybody who’s in business doesn’t try to change 100 percent of the
market; they change 15 percent of the market because the rest of the market
follows.

So the fact that many employers will say to me, ”

“Well, that’s true of Mrs. Jones. She’s real engaged in health care.
But the guy on the line — the guy on the line acts that way because the
tipping point he’s used to is that no one’s engaged and they don’t know their
A1C level.”

So what we try to do is say: Where is the tipping point 15 percent in
Komatsu who are the thought leaders on the floor of the plant who really get
it? You know, they just spent $50,000 on a (?) surgery; you did four of them in
your unit and you just built a smoking patio out back. And that $200,000 comes
out of your salary last year.

So what we try to do is create a tipping point company by company, industry
by industry, to say, it will be unacceptable. What I want to do is unacceptable
if the doctor’s office doesn’t have an electronic or personal health record and
you can’t take your key disk and plug it in.

In contrast, it’s interesting. One of our large potential clients, which is
a big IT company, has for years spent a lot of money on health information and
web tools. They get less than one percent utilization.

At Lumenos, we get 70 percent utilization. Why?

The incentives are right. You want to see how much money is in your account?
Go there.

We put together a checklist and we actually say:

Do you want to fly consumer-driven health care — it’s an Air Force analogy?
The pilot gets in every time, he does the same checklist. Take your health risk
appraisal. Put in all your drugs and look at the drug/drug interactions. Print
out the drugs and take them to your doctor. I can assure you he doesn’t know
what drugs you’re on.

Going incrementally like that, so tools and checklists, and then paying
people to get engaged, pay them to do the HRA on line so they get to see what
the on line thing looks like, have two-month periods where you’re basically —
Baylor health care systems, how do they change the culture, 13,000 employees,
is they basically had mandatory employee meetings at 11 o’clock at night when
the nurses got off the shift, 240 of them, to introduce them to the concept of
consumer-driven health care, show them the tools, and tell them that you’ll get
$50.00 for doing a health risk appraisal.

It has to be that dramatic and that hard to get it, but we’ll take the
first 10 to 15 percent and then let the rest, like every other change in
culture, kind of go with it.

MR. STEINDEL: Did you want to follow up on that, Simon?

DR. COHN: No, I was just going to let Bob —

MR. STEINDEL: I had a second — I had a comment —

DR. COHN: Okay, sure.

MR. STEINDEL: — on the standards issue.

DR. COHN: Sure.

MR. STEINDEL: I was going to ask you about the standards issue. And I’m at
CDC and a lot of these elements that you feel have not been standardized of
course have elements of great interest to many CDC programs.

The codes for those have existed for years. They’re in SNOMED. Smoking
history has been in LOINC for a while; we just expanded it in LOINC to cover a
lot of the risk appraisals that CDC has recognized and others have recognized
to make it a little bit more detailed.

The question I have back to you is if the standards are out there, it’s not
a question of getting standards, it’s getting people to use them. And, you
know, David — Dr. Brailer — can go in front of a room and say we need the
standards, but they’re there. They may not be totally right, and I fight this
battle at CDC every week because they say they are not totally right, and we
can change them.

But they are there, the rudiments are there. How do we get people to use
them?

DR. PARKINSON: Well, I would reconvene that august panel that David had
back eight months ago and said, “Gentlemen, where is it?”

If there are standards for health risk factors, codified ways, if there are
standards for all of the things that we talk about, then why in the world are
the standards in the McKesson product not the same as in the Cerner products
and the GE health care systems product as in the

Cooper Clinic product?

And that’s where you’ve got to ask: Is the private sector going to solve
the gauge of the rails, or is it going to be governmental action to say
“you must use this in a product.” Now, you can do other products if
you want, but then I need a seal of approval at Lumenos to go forward to Intel
and say “don’t ever go deal with a clinic over here at PAMF that doesn’t
use that UL-certified product.

MR. STEINDEL: I’d like to partially answer your question.

DR. PARKINSON: Yes — right.

MR. STEINDEL: I’d like to partially answer it because I still can’t go the
next round.

When did they make the announcement? I think they made the announcement of
May last year or the year before — one of the comments that we got back from
the vendors was: We don’t want to pay for the standard.

The standard costs money, and we don’t want to pay for it.

So what the government did was went out and bought the standard and now
provide it to all of America’s health care at no charge.

The question I have back — we did that before Dr. Brailer’s meeting. Why
is there —

DR. PARKINSON: Well, I think that you’re marketing to the wrong people.
It’s kind of my analogy of Herb Kelliher. I mean, Herb Kelliher’s friends and
colleagues were not the airline industry; they were the consumer.

So, to my knowledge, there is not a document or a statement that I can take
back to my 90 CEOs that says “here is what you need to insist upon in all
the doctors in your geography.” And anybody who sells you a
consumer-driven health plan with it, we use WebMD — I could print off a WebMD,
fits into your company or another, because if they don’t, then shame on all of
us.

But if that’s news, this is knowledge, this is news to me. I mean, I’m in
this every day talking to employers about it. So if the message is going back
to McKesson and GE and Cerner, oh, well. I mean, what I want to say is that who
in the world would buy, you know, a car that wasn’t tested by NTSA. Well, why
in the world would you buy an EHR, EMR that doesn’t use the standard so that I
can take my key disk and download whatever you’ve got on the WebMD site and
take it over to Johns Hopkins medical record?

Value added — I’ll put a marketing campaign around that tomorrow. I just
need the information and the fact that it’s actually doable so that other
products are disadvantaged in the marketplace and other ones are advantaged.

I just don’t think — I can tell you I’m out there hundreds of times a year
talking to employers and to health plans and to CFOs and business developers at
hospitals and that awareness is not there. If it is, it’s in one person.

DR. COHN: Maybe I’ll follow up. I just have a question of clarification
because I was whispering to Mary Jo about what we meant by standards in this
area.

And I’m always reminded when we talk this way that there are standards and
then there standards. The wonderful thing is that there are so many different
ways to describe this one.

Just so that I understand — I mean, what Steve is talking about is, for
example, terminologies that specify anything that you may want. Now, that’s one
set of standards.

Then there’s another set that we tend to think of as more like the NCQA or
JCAHO that these are the critical data elements that will allow you to figure
out — so you’re talking about his stuff, okay —

DR. PARKINSON: Is a smoker is a smoker is a smoker and et cetera — and the
other standard piece where I thought you were going, Simon, is the other
standard is even after I’ve codified what the description of that is, then in
terms of the electrons that flow in that McKesson product, can I plug it into
the electrons that flow into my medical record when I’m working in clinical
practice?

Otherwise, I’ve got to fat-finger everything again.

And so that’s where the companies are very important that make these
products, because if their electrons aren’t on the same gauge, then I stop —
even if I’m on both sides of the great technological divide, I know what a
smoker is at McKesson as well as — I’m not picking on McKesson — but if I
know what a smoker over here is, I know what a smoker is if I’m in the work
site clinic at Intel, and if I know what it is at Lumenos, it doesn’t help me
because the electrons — there’s no three holes in the wall when I go to plug
it in.

DR. COHN: Agreed, yes.

DR. PARKINSON: That’s the big issue.

DR. COHN: Yes.

DR. PARKINSON: What are the holes in the wall for the IT system?

DR. COHN: Okay.

DR. PARKINSON: And are those defined yet? I mean, I’m asking you. I don’t
know.

DR. COHN: Yes.

DR. PARKINSON: My knowledge is it was still out there to be determined yet.

MR. STEINDEL: They may be weak —

DR. PARKINSON: Okay. That’s —

MR. STEINDEL: — but that’s a different statement.

DR. PARKINSON: Okay, and that really is where, for example, when you go to
companies like Intel and you talk about, you know, IT and data standards, they
know exactly what you’re talking about. Whatever software built at Intel, you
ought to be able to play on another computer. It’s a similar thing here. That’s
the standards I’m talking about, not just the case definitions.

DR. COHN: And you’re reflecting how well this has been publicized and made
it into the industry, so, I mean, thank you.

Bob Hungate?

MR. HUNGATE: Yes, I was going to shift to a little different part of the
discussion, so if this was relevant to standards —

DR. COHN: Okay, and this is a follow-on — go ahead.

MR. HUNGATE: So maybe one of the questions that Steve is asking, and
combining with what you’re suggesting the industry does is are you requiring
WebMD to have a downloadable format in using SNOMED terms, for example, to
describe diagnoses in some file format? That would be one way of you acting on
according to what you describe.

DR. PARKINSON: Oh, I’ve got, you know, 90 companies and 250,000 members out
of 280 million Americans.

WebMD sells to everybody. With all due respect, they don’t listen to me.

What they’ve got to do is they have to realize that — and all these
companies have to realize — that their business model is threatened unless
they use these IT standards. Short of that, you can’t do business, or you’ll do
such a small level of business that you can’t be competitive.

And that’s where even asking the employers to “change” — I was
at Cerner, a guy who’s currently in Kansas City. Kansas City dominate the
market. You know, Corner’s a big company; there’s 4,000 employers in Kansas
City. If Cerner stood up: We absolutely, positively, have to, and he biggest
single player is still Medicare?

So the combination of the legislative and regulatory authority of the
government along with Medicare institutions are big players and they’re
marshalling the

National Business Group on Health, the National Association of
Manufacturers. If there was a single song sheet that said “if you’re going
to get more value out of your employer-funded insurance, you need to do these
three things,” and in time certain, which I thought is what David was
talking about, time certain that we’re going to have the plug in the wall, IT
standards codified, and if we don’t, we’re going to get very active with you to
come down and say “this is the way it’s going to be.”

And if you go back, again, the Union — read that plaque; it’s fascinating,
because at some level, the government got involved. It wasn’t the railroads
that said, yeah, I think we can compromise and make it 28-gauge.

DR. COHN: Okay, Bob?

MR. HUNGATE: Okay, does that cover the standards?

This was a little different question. In your HRA product, the company
supplied company-funded portions, the green portion up at the top. Do you use
the information about who’s a smoker and who’s a diabetic in determining the
amount of that funding for that plan for that individual?

DR. PARKINSON: No, actually ARIAS prevents you from doing that. For
self-insured employers you cannot, based on clinical status, do differential
amounts of a benefit design.

What we instead do is look at the universe to get back to the adverse risk
selection here. The way that we try to do this is to say: What would it take to
get a sick person into the program? Sick people solve first and foremost for
their out-of-pocket maximum. Sick people have always paid more money for health
care than well people.

The question is: Are you disadvantaged under an HRA plan compared to what
you had before in your PPO when you had a $1500 deductible, different
co-payments to your PBM, co-payment maximums on your PBM.

So if you solve for the out-of-pocket max and you make it competitive and
compassionate both in terms of dollar amounts and what they had before, sick
people want to come into the plan. And then what you can do, based on their
behaviors, not to run afoul of ARIAS or DOLL regulations, is say: Anybody can
fill out a health risk appraisal. If you’re any diabetic and you basically sign
up, you get another $100, et cetera. Those have withstood both DOL and IRS
scrutiny, which is why you could do all those programs under the health savings
account as well as under the health reimbursement arrangement.

MR. HUNGATE: Okay, that’s helpful, thank you.

DR. COHN: Gene, I think you’re next, and then —

MR. STEUERLE: This is a bit of a flyer. I’m not sure whether it goes here or
not, but I’ve talked to David Brailer, I’ve talked to a number of people about
this, but I’ve had the idea for some time that at some point the government is
going to step in — this may be your tipping point, Michael — and say, okay,
we’re going to pay a dollar more for shots or for lab tests or for other things
if the following additional items are done to make sure that these records are
available in some sort of electronic health record. But the picture, I don’t
know how to fully define it, and that’s what my question’s going to be.

It’s going to meet certain minimum standards for connectivity but it’s going
to throw it out to the market and say we’re not going to define what those are
but it has to be something that maybe CDC can take and it’s mappable into some
other function and that instead of trying to pick the entire universe, it’s
going to start with something like drugs or lab tests or shots or things where
I think we’re pretty close to being able to have things that could be put on
records but they’re not.

And that Medicare or Medicaid’s going to say, okay, we’re going to pay a
dollar more or a dollar less if this meets certain criteria.

And sort of I’m wondering — I’m being vague about this, but I’m thinking
maybe that’s the tipping point that gets a whole lot of things done because all
of a sudden doctor’s offices and insurance companies think, well, I got to get
in this game and figure out how to make it work.

And maybe I’m wrong — I’m somewhat afly. But I’m wondering if the three of
you might reflect if something like that was to come about if we could convince
Medicare or Congress, whoever had to make that decision, to pay a dollar more
or a dollar less or something — let’s define it with shots or let’s define it
with lab tests or something — what are those requirements that at a minimum
make your job easier but at a maximum don’t actually prevent the market from
actually thriving and developing new ways to do things and don’t allow
replacement systems to come in as they get better? Is that too far afield,
Simon?

DR. COHN: You can have them answer briefly. I mean, we are going to have the
CCHIT come and present in June — but please, I mean, your perspective.

DR. LAKHANPAL: In one sentence, HRA, health risk appraisal, participation
goes up by 50 percent if there’s a $25.00 incentive. So from five to 10 percent
if you went to an employee base and said, “Take a health risk
appraisal,” and you market it, you’ll get a five to 10 percent
participation. If you throw in a $25.00 incentive for the employee, it’ll go up
to 60 to 70 percent.

So, absolutely financial incentives help. Anywhere you put them, they’ll
help immensely. That’s our experience, at least.

MR. FONSECA: Yes, I would agree with that. We haven’t implemented anything
like that at this point, but that’s on the table.

DR. PARKINSON: I guess I have two perspectives, real quick.

Newt Gingrich says in every other industry except health care, you improve
the quality of product and simultaneously reduce the price, you don’t pay more.
But why is it that you think because you do a better job in health care, we
should pay you more on top of it, and when everybody assumes you already are
paying more than any other country we’re exporting jobs to?

MR. FONSECA: You could do it the other way. You could pay a dollar —

DR. PARKINSON: Exactly. But I want to go the other way, because I want to go
the other way because one of the problems that’s rubbing right now with pay for
performance in Medicare is that, well, you really just, you know, are shifting
money around from Peter to pay Paul and the net money going to the physicians
at hospitals is the same.

Part of it’s tough love. Yeah, it is kind of the same because there’s only
so much money in Medicare.

But I would much rather have it that you allow the consumer who’s the
ultimate driver of this to see the financial benefit to themselves of not
having duplication of 20 percent of their lab tests because Dr. Parkinson
didn’t get that electronic health record.

But I can’t push for the electronic health record until I can make sure that
there’s a compelling case on the doctor’s side to get market share.

So it’s a market share where your margin is greater because you’re an
efficient provider — which is really what large systems like, you know, PAMF
and others have done; they’re saying, hey, we know it saves us money and we’re
going to have a bigger margin even though we’re getting the same CPT
reimbursement. Surgical hospitals the same way — the don’t get more for doing
ACL repair of the knee as a surgical hospital; they just redefine their
business practices, which is exactly what the technology industry does. I get
more functionality for lower prices than constantly reengineering.

So that fear I got about paying more for an EHR, EMR is that you’ll get the
EHR, EMR but without the commitment to ongoing engineering of business
practices to drive down costs and improve value.

So it’s a nuanced way of doing it but I agree with you: Financial incentives
are very important. But how we do them are important, too.

DR. COHN: Okay. Cynthia, I think we’ll let you be the last question and then
we’ll take a break.

MS. BAUR: This is just a quick observation because I drew a different lesson
from the discussion here about usage and this matter of incentives and where
the incentives are because, I mean, I think what I heard Michael saying about
the population in say Blue Cross/Blue Shield is that those are the people who
are still for the most part insulated in terms of costs, so why should we
expect usage to be high at this point because what are they being offered to
participate?

I mean, if they’re relatively okay with what they’ve got, why should we
expect them to change their behavior to do something that causes them to go out
of their way, that maybe takes more time than what they’re used to?

I mean, what Michael I thought was talking about was that, you know, in way
it sort of loops back to this morning’s conversation about what is it that the
government can uniquely do?

I mean, remember the NHII definition has ethics in there, right? So the
government may be the only entity that could in an ethical way do some
experimentation around what is it — you know, what are the models that are
going to work when you’re dealing with populations for whom the economic
motivations are going to truly be the strongest, and that’s the uninsured or
people who have very little coverage?

Because as the people who are already essentially still protected for the
most part and maybe whose co-pays have gone up a little bit or maybe there’s a
little bit of cost-shifting going on, but they’re not truly exposed to the
market forces at the moment.

But we already know there’s 43 million people who are almost fully exposed
to market forces.

I mean, so I think the question is what would happen if those 43 million
people had access to what people up here have been describing? You know, what
would the incentive structure look like then? Where would, you know, these
payments have to happen?

You know, I just think — like I say, it’s a kind of a different lesson
because I keep coming back to the point that people seem to think we can derive
lessons from the usage data of people who are pretty much protected.

And I think it’s looking in an ethnical way at the people who are
unprotected that will draw a more informed lesson about what we can actually
expect from these things.

DR. COHN: I don’t know if it was a good observation; it was an interesting
observation. But I think it’s something we need to think about.

I actually want to thank all of our presenters, and this has been very
illuminating. I mean, certainly, I, you know, have been consistently asking:
Well, what is the business case? What would cause people to have this be worth
something and to actually use it or whatever.

And certainly I think we’re getting a lot more information. Michael, in
particular, you — I mean, we talk about aligning providers; you’re obviously
trying to align consumers. You know, it’s just interesting; without knowing
what the right model is or whatever, I think it’s interesting already beginning
to see the variety of models and what we’re sort of getting out of that.

Obviously, depending on what we’re doing, what it is we even put into all
of these tools becomes very different. I mean, if you think about what
Michael’s asking for versus other things we’re talking about, you know, the
issue of patient entering data versus educational modules versus whatever, we
may weigh these differently.

So it once again speaks to the fact that this is an evolving area. I don’t
think we know what a PHR in a mature form really is except that obviously we
need to be flexible as we move forward.

So I want to thank you all.

We’ll take a 15-minute break — and thank you.

[Break from 2:41 P.M. to 2:51 P.M.]

DR. COHN: Okay, our next panel is titled “Providers.” I want to
welcome David Kibbe from the

American Academy of Family Physicians as well as Michael

Gloth from the American Geriatric Society, and thank you for coming, and Jan
Towers from — oh, the American Academy of Nurse Practitioners; I was looking
not at the spelling but the acronym there.

Anyway, I think, David, you’re going to go first, and obviously we’ll have
you each testify and then we’ll have a discussion.

MR. HOUSTON: Simon, I’m back on the line, by the way.

DR. COHN: Okay, John Paul, welcome back.

MR. HOUSTON: Thanks.

AGENDA ITEM: Presentation — DR. DAVID
KIBBE

DR. KIBBE: It’s a pleasure to be here.

My name is David Kibbe. I’m the Director for the AAFP Center for Health
Information Technology. I also serve as the project director for Docket and
also the co-chair of the Physicians EHR Coalition.

And I can assure you the WebMD does listen to me, in part because I
represent 100,000 family physicians, but I also want to say that I listen,
because I listen to

WebMD. As a matter of fact, I listen very closely to all the vendors who are
in the space of electronic health records and patient health records.

And this is an issue that is extremely important to us at the AAFP.

In the past, when I’ve had the pleasure to come and speak before NCVHS on
other issues, I’ve read my prepared testimony. I thought I would depart from
that today because I think that this is one of the few times that I have
presented to you where I feel like perhaps we’re kind of ready to talk about
this and we’re not simply reacting as a major membership organization.

The patient health record and its relationship to health care and to
electronic health records in particular used by family physicians in small and
medium-sized medical practices is something we’ve thought fairly deeply about.

And I thought that by doing a slide projection presentation, we might make
this a little more interactive and get to your questions more quickly.

I’m going to talk a little bit about where I see the definition of
potential uses of patient health records first. Then I want to talk a bit about
the patient health record as a disruptive technology. And then, finally, get to
some reports from American Academy of Family Physician members on their current
uses of and readiness to use patient health records.

We have a number of different list serves, the largest of which has about
1,000 family physicians across the country who use electronic health records or
who are in the market for electronic health records, and this source of
physicians is excellent for this kind of feedback. I routinely ask them
questions about subjects like this to get information like I will present to
you today.

As you’ve acknowledged in the previous speakers, the current definition of
patient health records includes at least four variations.

There are PHRS — patient health records that are stand alone software
programs, so think “Quicken” for health information. There are
companies like CapMed that make software that goes on the patient’s home
computer and allows them to capture within the confines of the database
software on the computer information that is relevant to their health care.

There are similar tools that are web-based software services, in which case,
for the most part, the information is entered by the patient, sometimes by the
physician as well, and is stored remotely and thereafter is made viewable to
the patient or to the doctor.

And then I think we have to acknowledge that some people use this term
simply to mean any view of medical information that is stored somewhere else.
So there are, for example, health plans that are beginning to create web
browser-enabled views of health information. Your point earlier with regards to
— there’s a patient health record but there’s another EHR someplace and
information is coming from them I think was very apt.

And then finally I think we’re also seeing the PHR defined as a summary
health information file, or record, in a standard format. And I’m going to
spend some time talking about that because in some ways I think that having
this component, the file record in a standardized format based on XML, is key
to all of the others succeeding because it’s the key to all of the others being
exchangeable and being interoperable.

In particular, I want to comment a little bit on the ASTM Continuity of Care
record, or CCR. It is somewhat ironic that the Continuity of Care record is
having its ballot reconciliation meeting today across town and it’s possible
that by the end of the day we will actually have a standard releasable to the
industry and it’s also possible that we will continue to have a draft standard
and have to continue the deliberations which are kind of hot and heavy about
this new standard.

But the important thing to understand about the CCR is that it is a summary
of patient health information expressed in an XML schema. And it’s also
important to understand that it has been developed for the most part by
practicing nurse, nurse practitioners, physicians and some patients and that it
is not all the content that one could conceivably have in a patient health
record.

It is what we have considered after long debates to be the most relevant
patient information. I think of it as 80 percent of the information I would
need 80 percent of the time if a patient came into my office unconscious. In
other words, things like demographics, problem diagnoses, and medication lists,
including with advanced directives.

It is vendor product and technology neutral so that Michael’s use cases that
he was talking about of extracting at least this standard set of information
from one electronic health record and transporting it into another electronic
health record so that that information can be read and interpreted and stored
in proprietary information technologies is exactly what this is intended to do,
and in fact there are over 30 companies now that are experimenting with that
and using prototypes of the CCR, and I can talk about that later.

Now, this is kind of where we’re going with the CCR as the basis of a
patient health record. As a matter of fact, the personal health key, which is
on the left hand side of the screen, which is a company product that is made

by CapMed, has made an arrangement partnership with MedicAlert and they are
currently basing the extraction of some of their information on the Continuity
of Care record.

This new IPod medical is something I made up. It does not exist. But we have
been in conversations with folks from Apple about the transport of a CCR-based
patient health record on IPod. They are looking for ways, as you know, to make
the value and utility of the IPod go beyond carriage of music to first photos,
but I think it’s just a matter of time before we will also have capability with
patient health information.

And we are also involved — we being the ASTM Technical Committee members,
some of us — with telecommunications companies regarding the use of the
Continuity of Care record as a basis for a patient health record which would
carried on telephone, mobile phone, cell phone, so that would make it possible
for individuals — all of us carry these things, right?

All of us, almost all of us, carry these things now, too, these USB drives,
but we all carry these, you know, my kids included – would always have their
patient health records available to them and could transfer that information to
the doctor or to the clinic or to the hospital as needed and receive it back
automatically.

Now, I want to just briefly go over some of the things that make the
standard expression of this summary health information so important as the
basis of any kind of patient health record.

This is a portion of a Continuity of Care record expressed in XML. What
you’re looking at is the XML coding.

This is the same file expressed as HTML and viewed in a web browser. And if
I were on line, I’d be able to manipulate this file for you and show you the
additional portions of it.

But this is the point at which most people say, oh, I get it — this is
what the CCR is all about. This is a patient health record with defined
sections and information in it, for example, the problem list you see with
diagnoses that includes both codes and descriptive text.

And then one of the beauties of XML is that that same document, that same
code, can be expressed in multiple formats. In this case, I saved that same
file on my Apple computer as a PDF file, and this is the PDF file, the version
of it. It looks very similar. It doesn’t have any colors in it, or very many
colors.

We could have created a Word file as well.

And then finally, there is an application that takes this file — it’s an
open source application — and

looks for quality measures as defined by the Docket and previously the
Physicians Consortium, quality performance measures for hypertension, diabetes,
congestive heart failure, and select those data elements and their codes and
generate an HL7 file which then meets the requirements of Docket for the
presentation of that quality performance data to the (?) embassy database.

The point being is that any time a patient and a doctor were to have
created a patient health record based on the CCR, that would include the codes
and the results and the relevant — or could include all of those necessary for
completion of a pay for performance submission.

Very quick — I wish I had more time to show you this, but I think you get
the idea.

Now, the uses of the patient health record, particularly if we have a
standard like the CCR or something that replaces it, is, first of all,
convenience to patients. Clearly, I would like to be able to go to my next
physician visit and say, “Here’s my information. Don’t ask me the same
thing 14 different times. Please upload it into your electronic health
record.” And I think most physicians would like that, too.

I think safety is one of the major issues we should be doing in thinking
about this. And that almost need not be discussed, but we all know how many
times patients get prescribed the wrong medicine or the same medicine more than
once.

One of the problems I think we are facing in our society right now is this
gap between the electronic informational stores, for example, that health plans
have and that physicians might have use for and patients might have use for but
have no way of getting. Even if I have the best electronic health record, the
health plan is going to have information about my patients — their
medications, their encounters and so forth — that I might not know about.

I think care management is an obvious use of patient health records. I will
go over that — I won’t mention that at all because it’s been discussed
earlier.

And another one I want to make sure everyone understands I think is
innovation. How can we do something very different that we haven’t been able to
think of or do because we haven’t really thought outside the box?

And let me give you a very quick example of that.

Suppose you were a patient of mine and after the appropriate studies and
examinations and so forth, I gave you a diagnosis of rheumatoid arthritis, and
we had seven and a half minutes to talk about that. And I prescribed a
medication for you and you went home and you said, boy, oh, boy, I’ve got a
debilitating disease, or potentially debilitating disease; I have a new
medicine which my doctor has told me might harm my liver — what am I going to
do?

If I were in that situation, I’d go on Google and I’d do a search. And if I
did a search today on Google for rheumatoid arthritis — I did it yesterday —
you get 1,900,000-plus pages. Not very personal, not very useful.

Now wind the clock back. Suppose we could take that standardized patient
health record and send it, the de-identified information to a joint
Google-medical search engine that was developed by the folks at Google, NIST
and possible National Library of Medicine, and we use some of that information
like age, sex, current medications, allergies, as a filter for the search.

Now I might get back eight pages, or nine pages, but it would be
personalized.

And I think that that’s the kind of innovation that I think we ought to
think about because it is so directly valuable to the patient, at least
potentially.

Now, for the remainder of my time, what I’d like to do is talk to you a
little bit about what family physicians are doing and thinking about in
relationship to patient health records.

It come as some surprise to you that most of the family physicians I talk
to now expect patient health records will be widespread within the next few
years. This is not an idea that is foreign to them. They don’t have a lot of
experience with it, but the first thing they say is, yes, it’s going to come.

They mostly welcome this new technology into a basket of services
associated with e-Health. You may or may not be aware that a number of
electronic health record vendors now offer portals that physicians can then
offer to their patients and the patients can then do secure email, exchange
information, ask for a schedule of visits, and see some of their health
information through those portals.

And I think the other thing that I found was that family physicians link
PHRs to interoperability. At least some of them understand that this may be one
way in which we push forward the desired exchange of information between
proprietary technologies in our society.

So I’d like to just read you briefly some of these statements that came
from some of our members. I have asked all of the authors of these if it was
okay, but I’m not going to give you their names or places of employment.

“In anticipation of eventually sharing PHR electronically, I am now in
the habit of printing out a copy of the visit and a medical summary at the end
of each encounter and physically handing it to the patient.” So in other
words, this physician is already encouraging a kind of PHR to be used by his or
her patient.

“I encourage everyone to consider doing this now as it’s an
interesting transition knowing the patient is now in regular, direct ownership
of their record via HIPAA.” And I think this is another point I’d like to
make, is that our members, I think, are quite aware that HIPAA gives the
patient the right to ask for this information and therefore incumbent upon the
physicians to be ready to hand it over in some form that is affordable and
acceptable to patients.

“Overall, I prefer this approach, as it tends to encourage more
patient accountability.”

Here’s another member. He says:

“I think it is imperative that the patient be in possession or his or
her pertinent health information, and software allowing management of the
diagnoses, medications, allergies, immunizations, family history,
hospitalizations, surgery, lab values would be most helpful.

“However” — this is interesting — “there is a portion of
the record indicating the logic used to arrive at a certain diagnosis,
conclusions and opinions which is the functional equivalent of intellectual
property of the physician and does not belong to the patient.” And we know
that’s not correct, but it’s interesting, I think, still to try and understand
the thinking of this physician.

“This might include privileged information et cetera. Therefore, it
would be a very bad idea to allow unfettered access to the entire record.”

So I chose this example because I think one of the things that’s very true
about our membership is that although they are generally eager and looking
forward to patient health records, they also have some foreboding and some
sense of how are we going to actually make this work?

Are patients going to be able to go in and view an electronic health record
and then change it, or what portions might be changeable? And I think these
kinds of things are entirely appropriate to be thinking about at this point.

Another family physician wrote:

“I think PHRs are a very good idea. In fact, I think this
is a better pathway to the goals of interoperability than asking all of the
different electronic medical record vendors to be able to use a common language
to talk to each other. I say this because I think the best way to achieve the
stated goals of interoperability such as improved safety and saving billions of
dollars is to make the information patient-centric, not doctor-centric.”

In other words, this point of view, I think, is one in which the family
physician is really looking to share responsibility for this information with
his or her patients and probably is one of the keys to the large-scale
acceptability and use of patient health records of any kind.

“I see PHRs as a way to do this. PHRs can contribute to and read from
a PHR that follows the patient.” So, the idea is patients have their
electronic health record on this or their telephone and if I use an electronic
health record from any vendor, it can be read and interpreted.

“Asking them to do this with each other is ridiculously
problematic” — meaning the vendors — “and runs the risk of wiping
out the smaller, more affordable priced vendors if EHR interoperability becomes
part of the CCHIT certification.” Another thing about our members is
they’re looking very closely at what’s happening with CCHIT and the
certification issues.

So in closing, let me say that I think the position of our membership is
kind of forward anticipation but also understanding that there are
technological issues here as well as political and privacy issues there yet to
be solved.

So, thank you very much. I’ll reserve the time and give my colleagues a
chance to talk.

DR. COHN: Okay. David, thank you. Michael Gloth?

AGENDA ITEM: Presentation — DR. MICHAEL F. GLOTH

DR. GLOTH: Thanks. I come before you today representing the American
Geriatric Society and probably would prefer to share more of the viewpoints of
an organization predominantly composed of clinicians providing care for what I
think is arguably the most complex portion of the health care patient.

The electronic personal health record offers a first real innovation in
medical charting since Sir William Mosler(?) walked the halls of Johns Hopkins
over a hundred years ago.

As technology in business and medicine has progressed, physicians have
lagged surprisingly far behind, given the advantages in terms of communication,
better reimbursement, potential for reductions in medical errors and improved
information retrieval. It’s puzzling to many of us, and part of the reason
we’re here today, that this has not been embraced more fervently by the medical
community.

Right now, I guess you all have pretty good data on this, but it seems that
only about five percent, 10 percent, of physicians use PHR in the office
setting. Without going into descriptions that we’ve already heard about what
PHR actually means, I think we have a general understanding of that.

There is unquestionably a business case for PHRs, especially when dealing
with a frail, complex population as we see in our seniors where care is
severely hampered by regulatory bureaucracy and reimbursement inequities. PMRs
provide advantages because of their ability to, among other things, improve
communication, and in a handout that I have there for you, there’s a list of
about nine things, most of them focused, though, on the ability to improve
communication and reduce errors because of that.

Keep in mind that particularly for geriatricians and individuals provided
on the front lines of providing health care for complex seniors whether it be
in a nursing home environment, which is rapidly increasing, other long-term
care settings, or in the ambulatory population even beyond what we see in the
hospital, the ability just to get forms completed without having to complete
them all by hand with the same information over and over again also is an
attractive feature.

But particularly for our population, perhaps somewhat like we see in
pediatrics but on a very different scale in geriatrics, the ability where
authorized to give information to family members who may not even be in the
same state or country, yet their interest in terms of what is happening and the
patient’s interest in having them informed about what’s happening, also should
not be overlooked.

So why haven’t docs climbed on board with PHRs? And I speak from a practice
that would not exist had we not embraced PHRs right from the outset.

Clearly, the cost issue is out there. We need to modify the financial
structure of electronic health records so that physicians can actually take
advantage of them, especially small group practices, without having huge
economic burdens at the outset.

Yet, where that model exists, there can actually be an incentive, and in
our practice, patients own their electronic health record. The company that
provides the electronic health record actually pays us to update their
electronic version and coordinate it for them over and beyond the medical
records that we keep. The patients don’t modify it. They have access to it,
they own it, but we’re essentially contracted to keep their record in a form
that’s medically interpretable.

Also, every physician’s office doesn’t have the technical personnel which
may be required if we’re talking about a server being on site and a
client-based product.

There is the issue of training your office staff and your support people
within your office system. Many physician offices can’t accommodate that, and
certainly nursing homes don’t have the personnel to be able to do that unless
they belong to very large chains.

We all recognize the technology will change, and whatever happens, unlike
that rail system that we heard about a little bit earlier, that gauge for the
rail is pretty much still the way it is right now. We know that this technology
and the way to provide care is going to be continually changing.

One example of something very basic and what we worry about in the American
Geriatric Society is that we have probably a much greater focus on function for
our patients, and there are scales that are in existence today that were not
present even 10 years ago. And so I may want to know what is the chair to stand
time. Most IT folks have no clue what I’m talking about, and a lot of health
care providers don’t know what I’m talking about.

So we have to have the flexibility in whatever coding, language,
interfacing that’s available, to be able to adapt to changes as our health care
system and our ability to evaluate patients changes as well.

And there are concerns that the private practitioner has with regards to
security. Many are terrified that they’re going to have some kind of HIPAA
violation and have filled out lots of forms for every organization where they
have any interaction, whether it be labs, hospitals or long-term care
facilities. And now, the

thought that they may actually be in violation unintentionally of HIPAA
regulations and that somebody’s going to come knocking on their office is a
scary thought.

On the other hand, the EMR does provide another challenge, and that is
related to who has these records; how are they accessible?

Right now, if the Office of the Inspector General comes into my office and
wants paper records, they’re going to have a little dilemma. They may not have
the records that are in my office because there are no paper records, and in
order to get the server, they may have to go to another state.

We’ve been dealing in Maryland — I serve on the licensing board there —
what do with an electronic record if we want to get all the patient records
associated with a particular practitioner and all the records are electronic
and the practitioner “doesn’t own the records?” How are we going to
do those reviews?

So those are other issues.

While the market will eventually follow the path I believe of the
automobile — that is, many companies will vie for market share with only a few
ultimately surviving and capturing perhaps 90 percent of the potential users —
there is one barrier that must be overcome and it may prove to be the biggest
obstacle to widespread acceptance of PHRs.

We’ve heard about it repeatedly today — that barrier being the inability
of various PHRs to easily interface with other information vendors and systems.

As a clinician in geriatrics, I have to be able to interact with folks in
my office. They will eventually get to the hospital. Those records need to be
accessible there. There may be four or five laboratory vendors and imaging
groups that have been involved in taking X-rays, drawing blood and assessing
samples, and it may take place in three or four different environments.

Once they go from the hospital to the long-term care setting, whether it be
a nursing home, an assisted-living facility, all of those exchanges of
information need to be seamless and timely and accurate. One of the concerns
that we have had at Hopkins is that while we do a lot of interfacing, it’s
astounding to me how much money we spend just on interfacing with various
vendors that are out there. There is actually relatively little standardization
and oversight to make sure that that interfacing is actually accurate, and that
is of course a huge challenge as well.

It may be that we have to develop some viable interface engine and that
rather than having everybody adhere to one particular language, we offer an
opportunity that there’s an interface engine that whatever language it is, it
has to be able to interact with this mythical interface engine, if you will.

To produce the absurdity of where things exist — and I’m sure you’ve heard
many examples — I work in one hospital where I admit a patient to the
hospital. All of my information is on our electronic health record, which id
web-based. I can get access to all the information.

The hospital insists that I print out my history and physical, which I do.
They then have someone from their medical records go to the chart and scan the
information that I printed, which is now stored in their electronic record as
an image and has no advantages to the relational database from which it
originally came.

That is the extent and the anxiety that we see in other hospitals, other
systems, in terms of their concerns about security, their concerns about
interchanging information, and it doesn’t matter, obviously, that everybody in
the world can use HL7 — you still have to interface, you still have to expend
some energy to be able to be able to communicate back and forth.

PHRs will gradually gain widespread acceptance. I have no doubt about that.
We are going through the growing pains right now.

Currently, cost, education and interfacing issues create the main
challenges. How fast these hurdles are overcome will determine how quickly
patients will benefit from the almost limitless opportunities to improve care
through such PHR systems.

I’ll be happy to answer questions later, and we thank you very much for
taking an interest in the American Geriatric Society’s input.

DR. COHN: Yes, Michael, thank you very much. Jan Towers?

AGENDA ITEM: Presentation — JAN
TOWERS

MS. TOWERS: I’m Jan Towers, and I want to thank you for inviting us to
speak with you.

I’m Director of Health Policy for the American Academy of Nurse
Practitioners. We represent over 90,000 nurse practitioners of all specialties
in the United States.

As you know, nurse practitioners provide primary and specialty care in a
variety of settings, both rural and urban. While the majority of nurse
practitioners are primary care providers, an increasing number of nurse
practitioners are practicing in specialty settings as well. And for those of
you who are not familiar — although I kind of doubt that I have any problem
with that in this room — I did provide you with a copy of our scope of
practice that you can review if you need to refresh yourself in relation to us.

As advanced practice providers who diagnose and treat patients of all ages
and socioeconomic status, we are acutely conscious of the importance of
collecting and maintaining complete information on patients regarding their
health and illness.

From the perspective of providers, the fragmentation of patient medical and
health care records has been a major difficulty for all health care providers
and it’s particularly difficult for primary care providers who attempt to
coordinate patient care in an increasingly mobile society.

Attempting to obtain past medical records or specialty consults, historical
documentation of current conditions or even reports of emergency room visits by
patients in order to better manage and provide continuity to patient care can
become a very frustrating endeavor.

From the perspective of patients — likewise.

As patients move from provider to provider, they’re forced to remember the
dates and particulars of their health care experiences over a lifetime with
little or no documentation in their hands to use as a resource.

Some, like my mother, are wise enough to keep detailed lists that she used
to carry in her purse and she had such neat handwriting that everybody was just
so happy to get her lists whenever she brought them. And others are like my
husband, who does not take anything with him and constantly turns to me to ask
me for the information related to his history.

Thus, every time they visit a health care provider, whether it be a primary
care provider, a specialist, and we go on — a dentist, a chiropractor, a
podiatrist, or a social worker — the patient must start over to establish a
database for themselves in that new environment.

From the perspective of cost, in addition to compromising the continuity
and quality of the health care of our patients, this fragmentation leads to
increased costs to the health care system through the duplication of tests and
evaluations, increased time for taking histories and examining patients, and
increased storage of duplicate documents in multiple settings.

To give just a few examples. The concept of patient ownership of their own
medical health records is not a new one for nurses or nurse practitioners. Our
profession has long understood that patients have better outcomes when they
participate in their own care and take ownership of their own health behaviors.

The old traditions of not getting patients’ information regarding their
health status, whether it be vital signs, results of diagnostic tests, or
diagnoses and treatments, has been found to be counterproductive in producing
positive outcomes in patient care. It has long been recognized by the nursing
profession the patients indeed should have ownership of their medical/health
records and that those who do are better able to enhance their own care and the
outcomes of their treatments.

For those of us who have worked with vulnerable populations, attempts have
been undertaken to provide patients with their own records that they could take
with them to any health care provider. Child care, immunization records and
patient care record systems have been utilized, some more successfully than
others, to attempt to provide continuity of care to these populations.

For example, in the provision of providing health care to migrant and other
transient populations — and I notice you have someone speaking with you this
afternoon in relation to the work that they have done in relation to this —
this concept has been a major preoccupation when trying to reduce the number of
children who are unnecessarily immunized in each community they enter because
there are no documenting immunization records.

Likewise, providing prenatal care to patient with having them maintain
records of their progress to carry with them and share with all health care
providers encountered has been known to decrease complications and unnecessary
testing with each new encounter with a health care provider.

Interestingly, all of these undertakings have actually been carried out
without the use of computers by patients. But now, with the development and
proliferation of electronic medical records, the concept of a personal health
record seems even more plausible than ever.

However, several issues must be taken into consideration if this is to be
considered something that is to be implemented in a useful manner.

The issues that we see that still need to be considered are some that have
already been mentioned as people have spoken here today.

And the first is access. Such a system does need to be able to be accessed
by all patients, not just those who are affluent enough to purchase certain
programs or software and utilize it through their own personal IT networks.
Middle-income and vulnerable populations such as the elderly, the uninsured,
the homeless and those with low incomes need to be included in the process.

The system utilized must be affordable if all are to participate.

In the area of privacy, maintenance and protection of patient privacy will
be a major issue that will need to be addressed. With the increased ability for
hackers to steal identities, credit card identifiers and other records and
current, supposedly secure, computer systems, a major undertaking will need to
be implemented to assure the patient of the privacy and security of his or her
own record.

Control — the patient will need to feel control of the information that is
recorded about him and have opportunity to dialogue and correct errors in the
record that is attributed to him.

Accuracy — records will need to be accurate in order for them to be used
by the patient and multiple providers. Health care providers will have to be
accountable for entries into the record and methods will need to be put in
place that will prevent erroneous changes from occurring in the records due to
editing or other inputs.

And the last one that I have mentioned here, but I’m going to mention one
more that we had a little discussion up here prior to our session — the first
is inclusion of all health care providers. If a personal health record is to
work, all health care providers involved with the patient will need to be
included in the network of communication regarding a given patient record.

And this includes marketing products to them.

You talked about marketing earlier, but there was marketing to hospitals and
marketing to physicians. You really need to include all health care providers
in relation to that if you want to sell something that’s going to be utilized
across the board.

The seventh thing that isn’t on this list we were discussing earlier has to
do with trying to find ways to incorporate the family, because the family is as
much concerned and in need of information about the patients in their family as
the individual patient is.

And this is something that I’ve seen in the literature; it looks at how do
you protect against the families getting information when perhaps it’s not
desirable for them to have it? And I think we have to look at it from the other
perspective as well.

To provide PHRs for all patients in all populations will be a major
undertaking. The advantages of such a program include the ability for patients
and providers to maintain and obtain complete medical records at all times,
thus enhancing the accurateness of medical data, the quality and continuity of
care, the safety of care, and the ability to communicate more thoroughly and
accurately regarding the health histories and health states of individuals.

The problems associated with such undertaking include its magnitude and the
need for all medical records to be computerized in a common language;
maintaining confidentiality, privacy and security of records; maintaining
maintenance of ownership by the patient; getting everyone on board, and making
such an undertaking accessible and affordable.

Our organization will be investigating the breadth of the use of the
electronic medical record, the patient/provider communications via email and
the PHR, and the potential for developing this particular piece among nurse
practitioner providers in anticipation of the development of such programs, and
we’re just beginning to look at who all is using this and how they’re using it.

We certainly have used this outside the computer, and so looking at it in
terms of using it within the framework of computers is certainly what we’re
going to be doing.

We thank you for the opportunity to talk with you today and we’ll be glad to
answer questions or discuss this with your further at any time.

DR. COHN: Okay. Well, I want to thank you all for very interesting
presentations and somewhat different perspectives on all of this but I mean
very useful. I actually heard that you have just been — we finally found you
only about a week ago; we want to thank you for coming on such short notice, so
we do appreciate that.

Let me start with one question and then I’ll ask others to sort of chime in
and, Michael, maybe I’ll direct it at you though I’m sure that David and Jan
will have comments also.

One of the things that I’m sort of pushing everyone on is really sort of in
some ways — you know, as you know, I’m not an economist, I’m a doctor, but I
tend to use the term “business case,” like, you know, what is there
here that really — I mean, knowing that this can be used for many uses, your
personal health records and all that, I have been sort of postulating that
people with chronic diseases, elderly — many of which will of course have
chronic diseases — but there’s sort of a potentially a very strong business
case here.

I’m wondering if any of you can comment on that. I mean, as a physician who
spent many years seeing patients in emergency rooms, Michael, do you want to
start out with it, and David, then Jan?

DR. GLOTH: Unquestionably, there are many folks more qualified to talk about
the economics on a large scale in terms of entire health systems.

But in terms of economics when we bring it actually down to the grassroots
looking at the individual patients, there are many benefits, I think, from my
perspective.

But in terms of the health care provider, there’s little question that
streamlining this process of taking care of patients, being able to communicate
information,

Being able to, while I’m working with patients, actually get some guidance
on line in terms of questions that I may have clinically available to me now
instantaneously whereas I don’t have to go look for something, being able to
find out whether or not a certain lab had been ordered recently by some other
provider so there is not a redundancy and we’ve heard about that earlier, those
things are all very, very beneficial.

The other thing is, we have talked about — when I say “we,” I
mean globally talking about how patients often don’t get the instructions
correct when they walk out. You’re sitting there and oftentimes a physician is
talking to a patient who is either getting dressed, may be still in the gown;
it’s hard to really assimilate all the information and walk out of there.

And every study that’s been done asking how much information did you get
goes that not very much of what we said is actually comprehended at the time
that the patient leaves.

Unquestionably, the electronic health record and being able to have that
information available on line to the patient or even a hard copy when they walk
out the door, but certainly available not only to the patient but to some other
member of the family that is authorized by the patient who may have a better
understanding of what’s going on and spend additional time, certainly can be
helpful.

And then, finally, I think the idea that they don’t always get the
information is fine, but you know what? I don’t always get the information that
they’ve given me correctly, either.

And this one portion of the electronic health record has made that very
clear to me because I do make my information now available to the patients and
it’s available on line and they get on line. They look, and you say — you
know, it actually wasn’t my left arm; it was my right arm that was bothering
me.

And my records are actually much more accurate now than they were
previously. And I realize for some practitioners, that’s somewhat intimidating,
but I think ultimately we all make out better if we have the information
correct, and I think certainly there are fewer errors.

Let’s face it — if I send somebody with an HNP that says the patient’s
having a problem with their right arm, if that doesn’t get corrected at the
other end when they see the surgeon or dermatologist, the impact subsequently,
heaven forbid a major surgery has to occur, we can all see how those things can
really have a domino effect.

So, there are many ways on the front line where this thing could save us
money. And it’s not just with the increased efficiencies.

But from a system-wide viewpoint in terms of quality assurance, when we’re
looking at long-term care facilities and we’re trying to find out how good a
job are we doing managing pain, to be able to look at who’s actually got pain
and actually getting analgesics for it is a very helpful thing for us in terms
of quality assurance.

So, lots and lots of ways, many of which aren’t large system savings;
they’re really on the individual basis, and I keep that in mind.

DR. COHN: Okay. Michael, thank you. David?

DR. KIBBE: I’d like to answer that slightly indirectly, if I could.

We published in May a study that we have done with 30 vendors of electronic
health records about the costs of those systems and the total cost of
ownership.

And the way we did it was we — because most of the time I spend trying to
help justify or to understand the business case for electronic health records
for physicians in small practices — so we asked these vendors to tell us: For
your top product, what is the total cost of ownership over a three-year period
for a three-doctor practice? That’s one way of kind of uncovering that cost
issue.

And it was very interesting that the numbers that came up, which were then
verified with actual physicians using those products in real practice, was over
a three-year period, an average total cost, which include hardware, software,
training, maintenance contracts et cetera, et cetera, for that practice was
about $65,000, or approximately $7200 over the three-year period per doctor per
year.

Of course, there would be some ongoing costs after this. We chose three
years because that’s actually about the life span of most hardware today, but
it’s a pretty accurate figure.

Interestingly, the integrated electronic health record is clearly the better
deal here because it’s about $7200 where stand alone electronic health records
is $5500 and the billing system and the stand alone together is almost $9,000.

But the point I’m making is that for a very significant portion of our
membership of approximately 100,000 family physicians, this is now approaching
affordability. There are still plenty of family physicians who say, well, you
know, $7,000 per year for an electronic health record doesn’t make the business
case.

But what we’re finding in the field is that for more and more, this does
make the business case.

One of the use cases, or business cases, for the patient health record —
again, referring to the standard CCR — is that I want to make sure if I
purchase an electronic health record that is from Company A that I can get my
data out, or some of it, if that company goes belly up or I decide I don’t want
to use it.

To give you a real live example of that, a four-site, 15-doctor practice
recently purchased from Company A — and they decided to go slowly and they
implemented it in only one site — and after a year, they decided they didn’t
like that Company A and they wanted to buy from Company B for all four sites.

Well, by that time, they had 3,000 electronic records, or more, in that one
site, and they wanted to get that information out of their proprietary product
into Company B’s proprietary product.

No way they could do — absolutely zero. It was going to cost them over
$50,000 to write a customized —

So they are beginning to see, and they are beginning to demand, from these
vendors that they have adopted the Continuity of Care record because at least
they can get this basic set of information out on each patient in the event of
a situation like the one I just described or the company goes out of business.

So there’s a very strong business case there. It just so happens that that
same set of information in the Continuity of Care record is potentially,
particularly for these small practices, also their vehicle for providing
patients their patient health record.

I also want to suggest that there’s another business case that’s emerging
very, very rapidly, and that is the RHIOs. I have over 25 RHIOs that have asked
for further information or are currently basing their implementation in some
part on the Continuity of Care record.

Now, I have questions about the long-term viability and business case for
RHIOs — I mean, we all do — but at least in the short term, they are
beginning to look at the patient health record, a standardized set of summary
health information expressed in XML, as something that’s very desirable to
them. And I think there’s a business case there, although it may not be exactly
the one you are looking for.

DR. COHN: Okay. Jan, any comments?

MS. TOWERS: A couple of things.

The cost savings that I listed earlier are all there, and that certainly is
a business case. And of course, what was mentioned in terms of the resources is
valuable.

And I think one of the things that I’d like to speak to is the whole issue
of patient satisfaction.

Patients just do better and are happier and will come back to you if they
feel like they know what’s going on and they have something in their hand that
validates what they understand about what’s going on.

The other thing is that if you can streamline things so that — and I right
now am still clinically working in a homeless situation where people come in
and they’ve been treated in one town and then they come to another town and
they have multiple health problems, and every time you turn around, it’s sort
of like the kids with the immunizations in the migrant camp, you have to keep
doing the blood work over and over and then they sit there and say, “You
know, I really don’t want to go and get the blood work done,” and then
they delay getting it done because they’ve already had it done.

And so then they wait longer to have their illnesses treated, and then it
costs more to treat them because then they have to be hospitalized.

The whole business case floats around in that so that I think there are all
kinds of positive implications that have to do with making medical care more
cost effective.

DR. COHN: Okay, thank you. Other questions, comments? Linda?

MS. FISCHETTI: Thank you to all of the panelists for coming today. I’ve
appreciated your words.

One of the things that I wanted to point out is you did mention marketing
PHRs to nurses. I think that there’s another advantage here as well. As
everyone knows, the Gallop Poll since 1999 has included nurses and all except
for one year, nurses have come out as the highest rated for ethics and trust.

So when we talk about just issues of educating the public, we have a
discipline right here that’s close to us that would be an obvious group to tap
into to be able to reach out to the consumer.

DR. COHN: Thank you. Well said. Other questions or comments? Steve.

MR. STEINDEL: I have a question that I’m not totally certain is on the
point of the PHRs or anything, but I’ve heard all these positive comments about
the usefulness of PHRs, EMRs in physicians’ offices et cetera, and we’ve been
hearing this really steady since 2002 or so.

From a personal point of view, I’m associated with — I used to be clinical
chemist there — in what is now one of the 100 most wired hospitals in the
United States, Piedmont Hospital in Atlanta, Georgia. I’ve been seeing the
clinicians in that community who are some of the most advanced clinicians in
the area since we essentially moved to Georgia, my family, over 40 years ago.

How come none of them have EHRs, are talking about PHRs, nor have I ever
heard them even breathe the word?

DR. GLOTH: Part of my testimony that you have written before you, and I go
into details, but deals with that very issue. And the obstacles that are there
are unquestionably the ones that you have before you.

In addition that, let me just mention something about this issue of my
experience with health systems, hospital systems, and I’ll include Johns
Hopkins with that.

A hospital picks a system. They don’t necessarily pick part of their health
care record that is going to cater to the physician, nurse practitioner, or the
other health care providers out there.

What most of them have done is they’ve targeted — okay, how can we have
easy access to the laboratory values? How can we have easy access to the
imaging studies that are out there?

The products that are currently available in terms of the physician record
are often based on what Hospital C with physician notes, which is dictations,
so they will dictate, it goes into the electronic record. Physicians are not
directly entering in many circumstances; they are oftentimes dictating and that
record is then getting into the hospital system.

None of this has lent itself very well to your physicians out there in
private practice. And in fact, the private practice physician not only has the
dilemmas that I put before you in the written testimony which I haven’t dealt
with in detail verbally but also has the issue of not dealing with a single
health system.

As a physician, I’ve got to deal with literally, right now, three different
health systems. In Baltimore, it’s LifeBridge, Hopkins and a small community
hospital called Carroll Hospital Center.

In addition to that, I’ve got four nursing homes. Three of the four belong
to different nursing home chains. None of the nursing homes want to invest in
the electronic health record because they don’t have all the things that I
talked about before.

So as a physician in the community, when I go to LifeBridge and say,
“I’ve got an electronic health record system. I’m going to supply a
full-time IT person to you for two weeks so that we can interface our system
with yours,” they say no — we don’t want to do that. It takes some of our
time. We’re worried about security issues.

And you know what? Other physicians aren’t asking for this. There must not
be that much demand out there.

Of docs that are in the community, they don’t know what to get because they
want to be able to use it globally and they can’t right now.

The other aspect is they save no time on the first patient visit. It takes
you probably more time to get all that information entered initially. The
savings in terms of time really comes down the road and it really pays a
dividend for them if they can then go into the hospital and dump all the
information so now their history and physical takes a few minutes as opposed to
the time it takes to do all the dictation and go through and search for all the
notes.

Without that ability to interface and with the cost issues and the other
issues that I put here — and actually the cost, I think, with the model that I
talked about before, isn’t that great of a factor — it’s the other support
structure and being able to use it. And unquestionably, the biggest factor is
that ability to interface in the variety of settings in which they had to work.
And if they could do that, I think most of your docs would climb on board.

MR. STEINDEL: Thank you. David, I noticed you were nodding your head on
almost every statement. Would you like to comment?

DR. KIBBE: Well, a couple things.

Our members right now is somewhere between 15 and 18 percent are using
electronic health records, so I’d be glad to find you some doctors in Georgia
who are using electronic health records and would be delighted to do that.

But what I was nodding my head about is there’s a couple issues, and
Michael was referring to them. It isn’t simply the incremental change from 15
to 16 to 17 to 18 percent; it’s also the network.

And one of the real problems here that we’re finding with the adoption of
electronic health records, as the cost becomes more affordable and as the
products themselves get better, and they are, is that they are still data
islands and there still is not a cost effective way for me as a family
physician using GE’s product to send an e-referral to someone who’s using
NextGen.

I think that we’re approaching the realization as an industry and as a
profession, but until we get that network built, and it’s going to be built in
several different ways — I think the Continuity of Care record is one
potential small win in making that happen — I don’t think we’re going to see
this thing really take off.

It’s a little bit like the Internet effect, or fax machines. I mean, you
know — what makes the Internet so valuable to us all is that we can easily use
it and we can communicate with one another.

And what makes electronic health records now still so difficult to make
really useful is that for the most part, I am capturing information within the
confines of my own practice but I still can’t get the information from the
laboratory easily or cheaply into my electronic health record. I still can’t do
e-prescribing in most cases easily or cheaply from my electronic health record.
I can’t easily create a link to the referral physicians as a primary care
physician that I would like to send that electronic record to as part of an
e-referral. They are still sending me paper — by the tons.

So I think that you’re perhaps moving in kind of that direction and I think
it’s one of the reasons why the patient health record and demand by patients
might be one of the key issues here that will make this happen.

I remember when I developed a course called “Physicians Accessing the
Internet” for the AMA back in 1993 and took it all over the country with
20 computers and taught 60 physicians at a time. It was a terrific experience;
it was wonderful.

But that didn’t lead physicians in America to use the Internet. What brought
physicians in America to use the Internet was their patients using it, right?
That’s the unvarnished truth. Ninety percent of America’s family physicians use
the Internet daily in their medical practice and I believe that the biggest
reason for that is because the patients in the early ’90s started to bring in
information off the world wide web. And they hated it! [Laughs.] You know,
gosh, what am I going to do with all this information? Now it’s a common tool
for most primary care physicians.

I think that phenomena is something that we will probably see recreated,
maybe, based on the patient health record. I fully believe that we will not see
patient health records take off until there’s some tangible result for
patients.

I’ll tell you a little story about that, very briefly.

I was at one of my conferences that I attend. We all attend tons of
conferences. It was in San Francisco and I was on East Coast time and at 5:30
in the morning I was awake and I went across the street to the Starbuck’s to
get a cup of coffee. And this nice young man said, “What would you
like?” And I said, “Blah-blah-blah.”

And he saw the ticket around my neck and he said, “Oh, you’re at a
conference. What’s it about?”

And I said, “Health information technology.”

And he said, “Oh — okay.”

And the moment of epiphany for me was there was no way he understood that.
That had no meaning to him whatsoever. And until patients are able, I think, to
really participate in this process of using information electronically and get
tangible results, we’re going to find the kind of adoption that you’re hoping
will occur to be slower than we’d like.

MS. TOWERS: If I could speak as an observer since you directed that to
physicians, I think one of the things that we do see is all of these things —
I’d be interested to know what the average age of the users and the non-users
is, because as more and more people come through school and graduate and this
is a part of what they do and the way they communicate everywhere else, it gets
easier to plug these systems in and it doesn’t seem like an overwhelming job to
try to figure out how to make all these interfaces et cetera so that there’s
going to be a generational change, I think, which will contribute to that. And
then it won’t seem so time-consuming to put something together.

When I look at even in our homeless clinic what we go through to try to
keep our computers going, you kind of throw up your hand and do it the old way,
you know, at times, because there’s the breakdowns and trying to get things up
and running does take a certain amount of commitment that if you’ve got a busy
practice makes it real easy to stick with the old way.

DR. COHN: Well, Mary Jo, I think I’ll let you have our last question — oh,
Paul, did you have a question? Oh, please — I’m sorry. And then Mary Jo after
you and can be last.

DR. TANG: I want to focus back on the PHR, and I think the panelists did a
great job of saying what some of the benefits are of actually an EHR and a PHR
and then the response to Simon’s question about what’s the value, the financial
value and the quality value.

But I think one of the intents of the question is, for providers, the
business model that providers pay for these systems as they are for the PHR.
Are your members prepared to do that?

DR. KIBBE: Can I answer that? I just had a conversation with a member just
about this very issue this morning, and he was going to leave a group practice,
go into private solo practice, and use an electronic health record that has a
web portal that allows patients to communicate with him in his practice via
email and do all the kinds of things, you know, including see the view of their
information.

And he was going to charge $500 per year per patient who wanted to use that
as a sort of superior level of service. This was his idea. Because you’re
absolutely right — with the reimbursement system the way it works now, what we
could be adding on to the primary care physicians, nurse practitioners, nurses,
labs here is simply additional non-compensated management on line. It’s just a
very difficult problem.

And I think that there’s no great solution for that. We at the Academy have
a policy in which we are encouraging reimbursement change which would include a
management fee on top of the fee for service which would allow for productivity
associated with electronic health records and other information technology to
flourish because quite honestly, if you’re seeing 35 patients and the only way
you can get more bucks to pay for that additional $10,000 increase in your
medical malpractice in 2005 is to see two additional patients per afternoon,
information technology doesn’t really help you do that.

DR. GLOTH: All of the vendors, whether we talk PHR or EHR set up models —
say, okay, look at how much you spend in rent in terms of your medical record
filing system. And they go through each little item in terms of here’s how
you’re going to save if you go to this particular product.

The reality of it is I think offices are willing to pay, depending on what
the cost is and of course what the return is, and so it is a business decision.
When I go through this in my practice to decide what we’re going to use and how
we’re going to use it, it is a business model that we use. What is our return
on investment?

The reality of it is, though, the model that I talked about a little
earlier allows relatively little expense — it’s a web-based system; I don’t
need a lot of additional hardware. It is a system that has technology support,
so I’m not hiring new people for that.

It’s a system where I get paid to maintain a portion of the record from the
electronic health record company. They charge my patients for that personal
health record.

So the cost to me is offset already. Now, that’s a model I’m convinced every
EHR vendor is going to start to adopt if they’re going to market to small
practices. And that’s the distinction. It’s very different to market to me with
a couple of docs and maybe a nurse practitioner or two than it is marketing to
Johns Hopkins health care system, and I think that’s the distinction.

But unquestionably, we’re willing to pay, depending on what the cost and
that return on investment.

MS. TOWERS: One of the things that I see is that anybody you talk to who has
used electronic health records will talk about what a timesaver it is, once you
get it up and running and so forth; it really does cut back on the amount of
time and just stopping to think about how long it takes you to write a record
and so forth and so on.

Where I see there being some hesitation has to do with when there is an
email system set in that the patients now can write in and ask questions, and
someone’s got to make sure that all those emails get answered in a timely
fashion. And that can add hours to a provider’s time that maybe weren’t there
before.

Theoretically, they might be on the phone with those people and so maybe
it’s a tradeoff, but that’s the thing that overwhelms people, I think, because,
as you say, the public is very used to using email and so they often will think
to go ahead and buzz something off on an email that they might not pick up the
phone to ask about and they might not wait to come into the office for an
appointment for.

So I think that those are things that have to be worked out.

DR. KIBBE: One of the interesting sidelines, points of view, with health
savings account is will this

change the behavior, particularly at the primary care level? Will patients
be willing to pay for on line services that are more convenient and in some
cases less expensive and out of their own pockets, so to speak? I don’t know.
That could drive some of this in unpredictable directions.

DR. COHN: Mary Jo?

MS. DEERING: Okay, I think this question is for Michael and it does have to
do with what I understand to be the business model.

But my first question is: Are you willing to give us the name of your
vendor?

DR. GLOTH: Smart E-Records.

MS. DEERING: Okay. If I understand correctly, they charge the patients for
the ability to use this system, so the patients pay, but they pay you for your
use of the system. So the patients are subsidizing your use of the system. I
don’t mean to sound aggressive, but I mean, that’s what I heard.

DR. GLOTH: That’s fairly accurate. What happens is the patient comes into
the office, makes out a check to Smart E-Records. Smart E-Records pays us a
certain amount, based on the number of patients that we’re updating records on.
It’s not a tremendous amount, but, you know, it’s better than what I would get
in any other setting.

I think there are other models that would be based on that very premise
that could be more attractive. I’m not as familiar with other models that are
out there that are working off of that model.

But the patients like it. They’re very accepting of doing it. We like it.
We’re accepting of doing it. And it does take into account that you’ve got to
keep your records up to date in terms of what’s going on, and when they go
somewhere else, to a consultant, for example, we update that record for them.

And obviously, you know, we could keep it all on paper, but from the
electronic health record, personal health record, viewpoint, you want somebody
I think with some medical knowledge who’s going to keep that record in a format
that health care providers, regardless of whether we’re talking nurse
practitioners, physical therapists or whomever, and most patients don’t have
the wherewithal to be able to do that.

MS. DEERING: And I guess this would be a question then for Smart E-Records
rather than you, whether their costs are entirely underwritten by patient
subscriptions or whether they have any secondary business contracts for, say,
de-identified data or anything like that. Are you familiar with whether the
patient data is used, de-identified, for any other purposes?

DR. GLOTH: At this point, it’s not. I know that that is something that they
would like to do at some point in the future.

DR. COHN: Okay. I want to thank our presenters. You’ve been very helpful. I
think it adds another dimension to the conversation, including the concept of
subscription and all of this as a way to potentially make all this happen.

What we’re going to do is take about a 10-minute break and we’ll get back
together at 4:15.

[Break from 4:07 P.M. to 4:17 P.M.]

DR. COHN: Okay, would everyone please be seated? We’re going to get started
for the last session of the day.

John Paul, what?

Okay, well, this is the last session. The title is “Community
Providers.” We’re happy to have Cynthia

Solomon, who will start out, followed by Sarah Brachle, and finally John Ruiz.
John, we’re delighted you’re able to call in. We understand you had an
unfortunate event. Hopefully, you’re okay.

MR. RUIZ (by phone): I did. I broke my leg and I am recovering. Thank you
very much.

DR. COHN: Okay, well, we’re thankful. We’re happy that you could join us
despite that, so even though only by phone.

Anyway, with that, John, and for everyone, what we’re going to do is to
obviously have you talk first and testify and then what we’ll do is to have a
question and answer period for a while, so Cynthia, you’re on first.

AGENDA ITEM: Presentation — CYNTHIA
SOLOMON

MS. SOLOMON: Thank you.

Thank you so much for inviting me. It’s a pleasure to be here and an honor.

Our company, Access Strategies, started developing PHRs in 2000. We
launched our first one. We have three products.

But my background in health, economics and consulting is not the reason
that we developed the PHR. The reason for our PHR involvement is a personal
one.

I’m the mother of a child diagnosed with hydrocephalos and a brain lesion
about 18 years ago who went through 24 surgeries and about 30 hospitalizations,
who had multiple procedures, shunts. We followed his neurosurgeon from UCSF to
Stanford. Two of his providers, or physicians, have retired. And last count, I
had four boxes and about 15 pounds of scans and four boxes of medical records.

So I really do bring a personal viewpoint to this new technology.

However, I’m really proud of, and very excited about this project that
we’ve been working on for the last two years called VIA. We basically took the
follow-me platform and used it for a special population.

Migrant and seasonal farm workers suffer from various chronic illnesses and
they experience barriers to care such as language differences, poverty, and/or
lack of insurance, frequent mobility, and lack of familiarity or mistrust of
the health care system.

In starting out with this project, which was funded by two foundations, we
determined that the project outcomes would be to improve the continuity of care
for patients crossing multi-jurisdictional settings, to increase the patient’s
understanding of their illness and treatment, to reduce the number of work days
lost to illness, to improve patient satisfaction with the health care system,
and to demonstrate the ease of use among both patients and health care
providers.

VIA I a farm worker-owned electronic, or personal health, record designed
to empower migrant workers and to increase access to quality care, enhance
health outcomes, and decrease duplication of services.

VIA was launched in Sonoma Valley in 2000 under the La Posada Health and
Housing Partnership. Our three partners included the St. Joseph Health Care
Systems Mobile Medical Unit, Vineyard Worker Services, and Community

Health Resource and Development Center. It was funded by the Rural Community
Assistance Corporation and from a grant from the California Endowment under Ag
Worker Initiative Program.

The benefits of Mi VIA are that it promotes continuity of care with
portability of records from community to community. It improves worker access
to care with community-based information links. It’s cost efficient, user
friendly and addresses cultural and linguistic needs of workers.

Additional benefits, as you will see, include a printable emergency card
with a photo ID which identifies serious conditions, allergies and emergency
contact; a personal email address that provides a permanent address that
follows the individual throughout his life, providing a way to reach the
worker; a scaleable program with potential to be replicated on a regional,
statewide and even a national level.

For Phase One, we enrolled 36 migrant workers at the La Posada migrant
camp. Almost immediately, based on demand from the community, we increased that
to 250 migrant seasonal workers in the Valley.

We provided classes and access to the Internet. We actually developed a
training manual, and we used the Promotores de Salud for outreach and
enrollment. And this

was critical to this project. We actually spent a good amount of time doing
a training program with the Promotores to explain Mi VIA and the outcome and
also just to discuss the Internet and how to use it and where to access it.

We also provided each account, or each VIA user, with a free email account.

Before we did any of this, we actually convened a farm worker advisory
committee — that is, individual farm workers in the community or who were
visiting the community to actually talk about what we were trying to accomplish
and asked them what did they want to see in terms of their health care and
health information.

In Phase Two, we now are increasing the enrollment to 2,000 workers. We
currently have 1400 users.

Some of those, about 40 percent, are family accounts. Each family account
can hold up to eight family members.

We have completed a software upgrade which includes a provider portal, so
now a provider, once he or she has given permission by the farm worker, can go
to a provider portal and actually enter information which is read only to the
patient so that other providers looking at that portal — which I’ll
demonstrate a little bit later — will know which information was entered by a
medical professional and which information was self-reported.

This is the website. For purposes today, I’m just showing you the English,
but it is also available in Spanish, and the user determines which portal they
want to enter. That’s what it looks like.

We use SSL, and so they log in, giving us their user name and password. And
just explaining this to a group of farm workers was really fascinating
initially, but they’ve come a long way in coming and changing their passwords
and updating it. It’s really been remarkable.

So this is what the patient side, or the patient portal, looks like. So it
does several things. On the left hand side, you’ll see instructions, and I’ll
go through some of these briefly.

It provides an emergency card, provides a detailed medical report that can
be downloaded, printed, and given to other providers who might not have
Internet access. It provides immunization records. It even stores CAT scans,
lab results.

It has a portal for health and insurance information, because part of this
project was empowerment. It was actually trying to engage the consumer to be
more active in their health care, especially those with chronic medical
conditions. So in that portal, you can go on line and visit it, we might give
information in Spanish and English about how, if you don’t have insurance,
where you can access care. If you do have insurance and you’ve been turned down
for a procedure, how to apply for a hearing. How to ask for a second opinion.

We also have a portal for forms, so you have durable power of attorney,
release of medical records. Some of our other products actually, with other
providers, put in their information about surgery protocols.

Medical information. I think the most exciting part of VIA has really been
the education of farm workers and those that serve them that are not medical
providers.

We link to MedlinePlus. It is incredible. What we are seeing — and I want
to talk a little bit about some of these outcomes — is that right from the
patient’s chart, or the member’s chart, he or she can put down medical
information and they go right to MedlinePlus. They can determine whether they
want Spanish or English.

What we’re finding is that the outreach workers, the Promotores, family
members. Resource workers, are using this on behalf of the patients, or the
members. So if one has diabetes and he’s not quite sure about what it all
means, then his outreach worker can go in and print out — go to Medline, print
out the information, and hand it to him and go over it with him.

Just last week I was told by the resource worker that a gentleman came in
and he literally had a bag of medications and he didn’t know what he was taking
or what they were for and he was not taking them because he didn’t understand,
and so the outreach worker went to MedlinePlus from his portal and got an
explanation of each of the drugs and explained it to this person. So that was a
very great way to use it.

Find a clinic — we also link to the Bureau of Primary Health Care so you
can locate a clinic. Let’s say Juan’s in Sonoma and he has diabetes and he’s
going down to San Diego and I’m concerned about it. Well, then, I can just
click on find a clinic and locate right there a clinic in San Diego and say,
“Here, this is where I want you to go.” I can download his report,
fax it to them, or I can email it to them.

So these are just some of the services. I guess what I’m getting at in this
PHR is that we’re trying to do a lot of value added services to make this
chart, if you will, the storage point of value to the patient.

On the right hand side, and I won’t spend a lot of time because I’ll be
going into theirs, what we’ve done is: How do people read information? How do
they store information? When you’re at home — because, remember, this is a
PHR, so you have your personal total health and insurance information maybe in
one place, your emergency contacts.

We broke it down based on the types of information that people might want.

VIA comes with a printable emergency card, so as I explained earlier, so
once the patient, or the member — the focus groups, the workers wanted to be
called members — they truly think that VIA belongs to them and it’s their
project and their product.

So the VIA member receives an emergency printable card and what they’re
doing is at the resource in the mobile medical units, they’re printing these
cards out and laminating them. And in Sonoma Valley, I can attest that two of
the banks are now using this as a second form of ID for some of these workers,
and we are literally getting workers coming into the resource centers wanting
these cards and the email account.

This is just a brief review of a detailed medical report, so the
information that’s entered, we’re using a Dot.net platform in C-Sharp, and once
the information is entered, then it’s folded out into many, many fields, so all
the information that’s entered once gets put into the detailed medical report.

A lot of our workers are learning, when they access other health care
facilities, those facilities might not have the Internet, so we’re telling them
to bring their detailed medical report with them if they have some medical
condition that’s serious.

That’s the insurance center. Again, I talked about that briefly. If they
have insurance, no insurance, your rights.

What we’ve done in these portals, and I’ve cut up some of these slides,
under emergency contact information you can list the patient. If you click on
the blue, then it gives a detailed report of that person.

Conditions and procedures, the same thing. You can just take a quick look
and see that this person has asthma and diabetes and the date of onset. If you
click on that blue part, though, you would see that the report in more detail.

The office visits information, health care provider information, symptom
log. Again, going along with advocacy, how many times have you gone to the
doctor and he or she has said, “Well, how long have you been having a
headache?” “How long have you had the abdominal pain?”
“Well, go home and keep track of them and let me know.”

So part of our outreach and education is letting people know that they need
to keep their information in one place and also to track it. If you’re having
headaches, are they getting worse> So it’s very simple for them to go in and
complete this log.

Medication, the same thing, that whatever medications — and we also
explain in our site that it’s important to list everything you’re taking, I
mean, over-the-counter, herbs, whatever, especially in this population. Many of
them are using native plants.

Allergy information, again. So once the allergy information is entered,
then that also goes onto their emergency card.

Family history information, the same thing.

Even dental. Actually, the workers in our other PHRs, we don’t have dental;
we’ll be adding it soon. But in the focus groups, the farm workers who rely on
the mobile medical units for their dental care stated that they really wanted
dental as part of their chart. We made it that way.

The personal information — this is just to show you one of the concerns
that a lot of the workers had at the beginning is: Who will have access to my
information? Will INS come in if someone in our family is not documented? And
we explained that, number one, it doesn’t ask whether or not you’re a citizen.
Some migrants are not citizens and many more are.

But basically their personal information is their information and no one
accesses it without their permission.

Immunization information has become extremely important. A lot of these
families coming in have had their children immunized in Mexico and the way they
keep their records is very different from the way we keep our records and so
what we’ve actually been doing is working with the nurse practitioners to go
ahead and enter their information through the provider portal. But that’s what
it looks like.

Hospitalizations as well. What we have found is that many farm workers,
because they’re working all day and many clinics might not be open after five,
that a lot of people access care through local hospitals. So we actually
entered to get the hospitalization information.

As you can see, the reason for all the procedures, what was done.

For Version Two, we actually have about 600 enrolled, up and running, and
we did a focus group with our providers and with our users and with some of the
other resource organizations, and what we found is that the providers were
reluctant to enter information that could be changed. And also they were
reluctant to access the record if they felt that the information wasn’t
accurate.

So we actually created a provider, or a third party, entries read only
portal.

We also created an audit trail of entries and dates, making us HIPAA
compliant, I believe, and also identifies providers and clinics entering the
information.

So this is what the portal for the clinicians looks like.

First off, and it depends on the setting, but in our setting, the clinic
goes on — most of our users are clinics right now; we have two individual
providers — they go in and register and then give us this information and then
we authenticate them and then they get a log-in. Then they are able to present
a log-in and a password.

So once the provider — and I say provider here because in the world of
community clinics and in rural health, many of the people caring for these
patients are nurse practitioners and physician’s assistants and others, not
just physicians, and they’re very, very valuable to us, but once the provider
determines, or the clinician determines, that they would like to participate
and they’ve received a log-in and a password and they’ve been authenticated,
then what happens is they enter the patient’s log.

So if I’m Maria and I’m visiting Mary who is going to be my provider, I
give her my log-in and password just once. And what happens is then I will show
up into Mary’s chart.

So what you see here is the clinician’s overall VIA charts, so all of my
patients in Mi VIA now show up, and all I have to do literally is click on —
which I’ll show you in a minute — each of these patients and be able to look
at each of their records.

So in this case, this is Maria, and I see that she has some conditions and
she’s had some tests and that the information has been entered by a physician
and where it was diagnosed. So basically I have access to all the same reports
that the patient site does, but any information that I enter again is read only
by any other third party.

In Version Three, I am happy to announce that we’ve just been awarded a
grant from the California Endowment to move to Version Three which will be
putting some additional features, and that will help us to actually work on
some public health issues that we’ve been dealing with.

We’re working in partnership with Sonoma County Department of Health
Services to add a TB module to Mi VIA so that we can track the TB cases in
Sonoma County, and that’s very exciting. And we’ve also realized that we are
now able with the VIA project to broadcast emails.

So let’s say that we have providers in Sonoma County, providers and
patients enrolled, and there’s an outbreak of measles or there’s an outbreak of
hepatitis. We can actually broadcast emails to those providers and those
patients alerting them to the public health problem.

Part of this project, too, was linking resources, and I just want to spend
a minute on that.

What we did is from every patient portal, or every member portal, we have a
service wheel. So anybody in VIA that wants to locate housing or legal
assistance or health services from their site — let’s say Juan is in San Diego
and he’s coming to Sonoma and he wants to find housing — then he just clicks
on that portal and locates services that are helpful to him in Spanish or in
English.

So, once they locate the services, then they can make those phone calls,
they can set up their housing, they can set up their health, they can set up
their legal, they can set up integration.

So we’re pretty excited.

So the 2005 and 2007 goals are that we are under this new grant expanding
enrollment. We hope to expand in northern and central California between 5,000
and 10,000 people in the next 18 months. The Northwest region, the Northwest
Primary Care Association is looking for funding so that they can implement VIA
into their state, and they’d like to enroll up to 3,000 workers.

We are in the process of convening key stakeholders serving migrant and
seasonal farm workers, and that’s very important for many of the things that
you brought up today.

We’re trying to structure Mi VIA as a collaborative national effort. Why I
say that is that we talked about pulling data, non-identifiable data. Well,
we’re able to do that in these portals, and so that comes with a great
responsibility, is whose data is that? Who does it belong to? What should be
done with it? How do we use it to improve health outcomes?

So my mission literally for the last six months has been in contacting and
working with those organizations and agencies that serve this population and
are committed to their well-being.

I think that’s it.

DR. COHN: Well, Cynthia, thank you very much. Great presentation. Sarah
Brachle, you’re on next.

AGENDA ITEM: Presentation — SARAH
BRACHLE

MS. BRACHLE: My name is Sarah Brachle. I’m the Director of Policy and
Research for One Economy Corporation. And I want to thank you all for having me
here today.

To give you a little context for who One Economy is and what we do, we’re a
national nonprofit that was founded in 2000. Our mission is to help low-income
families utilize technology to build assets and join the economic mainstream.

Our key founders actually have a background in affordable housing, from the
Enterprise Foundation to various government entities working in affordable
housing. They saw technology as a vehicle to help bring holistic service view
to low-income families so to help low-income families find information that
would help them address the other problems they’re facing like health care,
education, those types of things.

Our work centers in three main areas.

Access — we have a public policy campaign to insure that all new
affordable housing that is built is equipped with high-speed Internet
infrastructure. And we have programs to get more computers in the hands of
low-income families affordably.

We have a website; it’s called the Beehive, and that’s going to be the
primary vehicle for our personal health record. The Beehive is written at a
sixth grade literacy level and it’s available in English and Spanish.

We provide a variety of information to targeted low-income families that
are very low literacy level and everything from health care to education, jobs,
money, those types of things.

What we’re looking to do is help families learn more and then take action.
So, for instance, you could read about health insurance and about the free
children’s health insurance program and then click to find a local provider
near you where you can sign up for free children’s health insurance.

We provide email addresses as well so that you could drop an email right
there and try and find out about the program.

The Beehive, by the way, gets between 300,000 and 500,000 users each month.
It’s a national website and we have local offices in 10 cities and we have
local Beehives in 20 locations at this point.

Our third main area of work is to try and bring about a culture change and
to increase technology usage in low-income communities, which means that we
partner with low-income providers in a lot of different areas.

So I thought it was important to give that little bit of background so you
know what our point of reference is. We’re basically looking at this from the
viewpoint of low-income consumers and what will they use and how does it need
to be presented to them in order to make it something that’s going to work for
those users.

So a little bit about project details.

We were awarded a grant from the Robert Wood Johnson Foundation last fall.
They basically wanted us to talk with low-income health care providers as well
as patients to develop and evaluate the usage of a personal health record.

We’ve established a partnership with the Mary Center for Maternal and Child
Care in Washington, DC which for non-DC natives is in a very low-income section
of DC. It serves primarily Latino families. These are high-risk, low-literacy
families, a lot of first generation immigrants in that population.

So our plan is to work with these users and providers to develop the tool
and then to get feedback from them on how to improve it. So after having
listened to Cynthia’s presentation, I was thinking we should have flipped the
order because we’re in the conception stages and clearly she’s got an up and
running product, but we’re looking at slightly different populations here.

This is just a quick overview of the timeline for our development of the
tool. Again, we’re in the preliminary stages. We’re still doing focus groups.
But we have gotten some feedback from folks on what they would and would not
use.

I wanted to just give you a visual on the Beehive, what it looks like.

This is the home page of our health care section. General information is
available nationally on a variety of different topics, as I mentioned, and then
you can click through.

I notice that you also had service information on things like domestic
violence and how to find some place locally.

So back to the projects.

In March of this year, we presented wire frames, which are just slides with
general conceptual ideas to the providers. So in the next couple slides, I
think you’ll see — I hope you’ll focus just on the categories and not on the
design or the wording.

We weren’t looking for intensive design feedback from the providers but
more what are the elements that needed to be present in a personal health
record.

And again, we’re asking them to look at this from the viewpoint of their
patients as well as themselves, what would be useful.

This would be the main home page, as you can see. The elements that we have
listed are doctor visits, medications, diseases and conditions, health records,
exercise and nutrition, and personal contact information.

We, too, have a log-in page here where you would get to the main screen.
It’s going to take you through just a couple of the different elements here to
give you an idea of what we were showing.

Again, there would be entry for different pieces of information about a
doctor’s visit, which would then pre-populate a chart where users could then
click through and refer back to the different doctor visits.

On diseases and conditions — actually, I should flip here first — there’d
be entry of the different information which would then go back and populate
this chart.

The providers told us that it would be more helpful given the low literacy
levels of our population if we instead provided a series of questions which
said, “Have you ever had high blood pressure? When did that happen?”
and those types of things, instead of asking folks to populate a chart which
might be beyond their literacy capacity.

Similarly, we’ll be creating a personal contact information with an
emergency wallet card which would be printable.

And some of the feedback that we got. Providers basically felt that just
having a personal health records that kind of floated out in space was not
going to be helpful, that patients needed to be able to link information onto
visas, on maintenance, those other types of things, and also be able to get to
providers in the area, which are all things that we would offer through the
site.

They wanted us to prioritize the pages so that at the very least, users
would then fill out the wallet card information because they felt if they at
least carried this into a clinic, that would save them a lot of time.

There were different sections that they wanted us to add, and as I
mentioned, they wanted leading questions to populate to make it most helpful
for this low literacy population.

Their biggest concern was: How is this personal health record going to sync
or interface with our clinic databases and system here? For them, it was
absolutely no help unless there was some sort of interface there which I think
we heard mentioned in various other panels.

Some of the specific questions I was asked to address are:

What are community providers doing to provide personal health management
tools? At this point, in this low-income clinic in DC, nothing. None of these
providers that we met with had ever heard of a personal health record and so we
were basically starting with square one to educate them on what it could be and
how it might function in the larger context.

What were their concerns and obstacles to adopting something like this?
Lack of time, access to input information. They really were very focused on
who’s going to do this? We’re working with low literacy clients.

We’re going to wind up sitting in a computer and entering

this for them. And if we’re entering it in our own system and then in their
system, we’re entering this twice, and this is definitely not a time saver for
us.

They also mentioned that they had six computers for 40 providers so that
computer access and technology access is a huge barrier from their perspective.

They also mentioned, you know, quality control issues. To ask a doctor to
sit down and put this data out would take a lot of time so likely it would be
passed off to an aide or a tech and they were a little concerned about what
sort of data would then be inputted here.

What did these providers feel the patients would say about adoption and
acceptance? They reminded us again about the very high illiteracy and low
education levels in their patients.

We specialize in building multimedia tools and they were focused on that
because they felt their patients would not be able to navigate a text-based
tool.

Also, in this population especially, we have a lot of, as I said, first
generation immigrants and there’s some undocumented folks and this is possibly
their first time walking into a medical clinic. You know, it’s a fearful
situation and they’re worried about sharing personal information, those types
of things.

And these providers didn’t feel these patients had the skill to input this
type of data.

We went on to ask if we were asking the patients to do too much, to fill
out too much information, and these are a couple of the responses that we got.

Just to summarize, one provider felt that it’s hard for them to imagine
their patients using a tool of this type and also that it would be unhelpful
for them unless, again, it could interface with their own system.

And another provider felt to insure there was a demand for a personal
health record.

I’d just like to point out that, remember, this is our first exposure to
the personal health record and what the possibilities for it could be.

What can we do?

We feel that some of the answers to this are increasing technology
penetration in low-income communities. We need to get more computers in homes
and more people using computers for them to be able to see the value in
something of this nature. You know, as we all use computers more, we feel more
comfortable with using them and the privacy issues associated with them, so
that would be one step.

Similarly, we would need to increase the technology usage among these
low-income clinic providers because there are six kind of old, antiquated
computers that they’re using here, and so these are not necessarily the early
adopters of technology.

So we would need to frame this for them in a way that would show them the
utility and usability of this and then walk them through the process.

In both of these cases, we think more pilots can help. Being able to point
to projects like Cynthia’s where folks are using this and how it has proven to
be very helpful I think will really help to increase the usage here.

And we need to make sure that we build a user friendly tool in the end,
something that can interface and is easy for patients to use.

Thank you.

DR. COHN: Okay, Sarah, thank you very much.

Now our final presenter, even though we know you’re sort of probably on your
back, John — are you there?

MR. RUIZ: Yes, I am.

DR. COHN: Yes, John Ruiz, thank you for joining us. You have the floor.

AGENDA ITEM: Presentation — JOHN
RUIZ

MR. RUIZ: Okay, thank you very much.

I, too, want to thank you for the invitation to provide testimony with the
Committee. I think your work is quite of value, especially as we move forward
with technology in the United States.

Everybody’s fascinated with technology and what we can do with it. It’s when
you start actually implementing things that you begin to look at the many
various issues that you begin to see whether something is feasible, viable or
not.

First, let me tell you first a little bit about myself and the organization
I work with and the community that we represent.

I am the Associate Director for the systems development at the National
Association of Community Health Centers. We are a trade association that
represents community health centers across the country.

I’m not sure how familiar you are with community health centers, but there
are approximately over a thousand Federally qualified grantees that receive
funds from the Federal government to provide health services to the community
health centers. They represent about 3500 sites across the country and
approximately between 12-13 million patients. Services are for the medically
underserved. They do not turn anybody away.

Health centers are unique in that they are one of the largest markets — we
like to consider us the largest health care markets in the United States.
However, the issue is that they are not, as, say, Kaiser Permanente or Columbia
where they’re all under one umbrella.

Health centers operate independently; they are nonprofits that are run by
the communities that they serve. So you may see a variation in health centers
across the country. Some of them may be smaller centers with maybe two or three
providers. Some of them may be affiliated with a hospital and have as many as
30 to 40 providers, maybe even 100-plus staff.

In the same manner, their operations also can vary in terms of
sophistication. Some of them may have state-of-the-art technology in which they
may have an EMR, they may have clinical systems, a billing system that’s all
automated, and others may simply have one personal computer that they’re
working with, may have only one computer that has access to the Internet. They
are, of course, located in both rural and urban areas, which present its own
challenges for technology and provision of services.

That’s as far as health centers go.

Let me talk a little bit about the challenges that health centers have with
technology and where we are at currently right now, As you are aware, there is
a Presidential initiative at HHS to sort of look at technology and health care.
They have an Office of the Coordinator, National Coordinator of Health
Information Technology, that is looking at where we are as far as a health
information infrastructure in this country.

As such, they are looking at incentivizing, ways to incentivize providers
across the country to adopt more extensive use of technology, particularly
looking at a paperless environment and looking at the use of electronic medical
records,

Having said that, it’s important to know that health centers have been
involved with technology for some time now, even before the initiative, mainly
because they have seen the value of having information systems to provide
feedback as far as information related to the health records of the patients,
information related to the cost of providing health services, being able to
bill for their services, and also adding information for management and
decision purposes.

They have participated in initiatives, particularly over at the Bureau,
related to developing networks, what is called ISDI — Integrated Service
Delivery Initiatives — and also SIMIs, that provide SIMIs, which is Shared
Information Management Resources, that they get funds for to set up clinical
systems.

Some of them have used the SIMIs to assist them in purchasing software for
practice management systems and

even beginning to look at electronic medical records across a network of
providers so that they are able to leverage the cost. As you are aware, costs
for adopting technology is quite expensive, not only in terms of the monies
cost but also in terms of the staff resources and time that need to be devoted
in terms of educating staff and also implementing any type of technology within
the operations themselves.

Okay, having said that, that gives you a little bit of background. Let’s
talk a little bit about personal health records. I personally took an interest
in personal health records, oh, maybe about four or five years back when
Edward(?) came out with their website and the personal health records and
looked at it and said, well, this is a fantastic thing to have here. We should
be adopting this because it would be great for patients to be able to have
access to their information.

It was a great idea, looked fantastic. However, I started talking to the
health centers about it, and they began to look at it in terms of, well, what
value added is there in terms of my operation — which gets a little bit into
the question that you asked that Cynthia sent me to address in terms of this
particular testimony.

And the first question was: Is there a business case for public personal
health records? Why or why not?

I’d like to address that in the context of what I just said about community
health centers, where they are in terms of the challenge with information
technology, where the administration seems to be moving towards.

And in addressing that, I would like to look at it from three perspectives
— from the patient’s perspective, from the provider’s perspective, and from
the actual organization that is providing this tool to the patients out there.

So let’s look at the patient and the business case.

Of course, for patients, there is a business case because you want access to
your information. I can tell you that right now, myself, I just went through an
accident, have been to the hospital, broke my leg and everything, and my
question has been throughout the whole process: Can I see my records? I’d like
to see my X-rays. What is there? What is happening? What is being written down?
Who is looking at my records? And all that kind of stuff. What can I expect?

One of the questions I had is: I wanted to see my X-rays. They took a lot of
time and effort to see my X-rays.

So you ask yourself the question: Of course, patients want to have access to
that information, so there is a business case for that. From an organizational
perspective, it is value added in that patients have access to that
information; they’re just going to attract them to your services, right?

From a provider perspective, we look at, you know, the providers, of course,
what they’re going to be looking at then is liability issues. Who is
responsible for that information? What reliability is there in that information
in that patient health record?

And of course there’s the issue of security nowadays as we enter the
Internet Age.

From an organization perspective, there are more on the negative side. They
are looking also at the same thing. What are the liability issues? What are
costs?

What is my return on investment? What is the value added in terms of having
a personal health record?

As organizations, community health centers are looking at this. One of the
big issues that they’re looking at in terms of a business case is: Do you go
after a personal health record or do you go after an electronic medical record?

I will tell you that by and large now, I know that there are many more
health centers that are pursuing electronic medical records than there are
personal health records, and that is because, of course, in an electronic
medical record what they see is that it is integrated within your operations
itself so that there is only one data entry in there. Once that data is there,
everybody has access to it.

The question when you look at a personal health record is: Who is entering
that information? How integrated is it with your other systems within your
operations? And they generally tend not to be.

So that when health centers are looking at a personal health record, they
are looking more first at let’s set up an electronic medical record and then
from there be able to provide access to the personal health records to the
patients themselves.

So I think that the personal health record has taken a back burner kind of
point position in relation to the electronic medical records as far as health
centers go.

And that has to do a lot with costs and resources that have to be devoted to
it.

Certainly, they are more willing to put the money into an electronic
medical record and staff time because they’re going to get more return on that
than they would from a personal health record. I think that when many of them
do look at personal health records, it was because electronic medical records
were not as far along as they are at this point in time.

So that becomes the question of a business case from each of those three
points.

So then the next question that I was asked had to do with barriers. What
are the barriers and what are community providers doing to provide personal
health management tools? So what are the concerns and other obstacles to
community providers with regards to adoption of it?

Of course, I mentioned that for the providers, one of the concerns is: Who
is entering in that information? You have to imagine and realize that a lot of
providers nowadays, they’re under a lot of pressure to produce, to get as many
patients in and out as possible, so they’re under that constraint. Who is going
to enter that information that they’re producing?

And so there’s a concern with that from a provider’s perspective. They
don’t have the time to do that. It’s difficult enough to get them to fill out
their charts, let alone be able to put in information into a system that would
require double entry if it is not tapped into your current systems right now.
And that’s what we find with a lot of these personal health records, is that
there’s going to have to be double entry unless it is interfaced with your
current systems that are there.

Of course, there’s a concern with reliability of the information that’s
there. If the patient is entering information, if other people have access to
those records, how reliable is that information?

Of course, then also you talk about security nowadays, that you certainly
have to have a lot of security in the Internet Age and the on line system age
to be able to rely on the information that’s there. How extensively is that
information being used?

From an organization’s perspective, I’ve already talked about, you know,
the liability and the cost issues.

So those are barriers that are there.

Now, the next question that I was asked is:

What could be done to address these barriers?

And I think these are the issues, and I know

Cynthia Solomon; we’ve had discussions with regards to the system that
they’re developing for migrant seasonal farm workers. One of the hats that I
wear at the organization is that I am staff lead on migrant seasonal farm
workers’ health at the organization, so I look into these things, and we have
had discussions with regards to why there is a need for, and there could be a
value with regards to, a system such as VIA for migrant seasonal farm workers.

And the main reason being that it’s because of the mobility of that
population that’s there so that if they have access through a system such as
VIA, then they have a system where that information can be integrated and they
can access it from anywhere.

You know, there is a sort of low technology personal health record system
out there that’s being used within the migrant seasonal farm worker population
right now and it’s called Heart Fax. And Heart Fax was developed piggybacking
on a system that was developed by a company for the mobile population that
travels from New York to Florida.

It is called Heart Fax because the idea behind it was to provide a venue
for those individuals that traveled from New York — elderly patients — to
Florida. So now they’re in Florida; they have a heart attack or some cardiac
arrest and they end up in the hospital. And the question is: Have they had
services anywhere? Do they have access to their EKGs?

Well, Heart Fax was developed to provide a means for having that patient’s
records from New York available in a third party source so that if something
should happen to them in Florida, they have a card, they’re able to go in and
dial up a number and you do into the system and if there’s information related
to their latest EKGs, you’re able to download that information via the fax
machine, and the provider then can see what has been done with that patient.

This same Heart Fax system is being adopted amongst the farm worker
population specifically looking at their immunization record and is being
piloted across a number of migrant seasonal farm worker programs across he
country.

So that’s sort of an example of a low technology use of a personal health
record.

There was even one before that that the migrant clinicians’ work was using
in terms of trying to assist farm workers in being able to keep and provide
information related whether they’ve been exposed to tuberculosis or not. And
what they would do is provide a card that the patient would have that they
would carry with them and then when they go to the next provider, they’d
provide that.

Of course, there’s problems with that because you lose that information,
you know, along the way, and stuff like that.

So there have been attempts to look at this in the past.

The barriers, as we speak — and I’ve had conversations with Cynthia again
related to who puts the information in there, how reliable is that information,
is it tapped into the system? The double entry that has to occur with that
information, who’s paying for that?

I’m sure that one of the questions you do have to ask yourself is, you
know, Cynthia’s doing this via the VIA and their organization. The question
becomes cost: Who’s to maintain this? Where do you get the costs to do this?

And Cynthia Baur provided me with information related to Connecting for
Health and I went to the website and of course there are a number of
organizations there that have personal health records.

Of course, they have a business interest in there, when you talk about a
Kaiser Permanente and stuff like that. They have an interest in their patients
being able to have that information and they have the deep pockets to be able
to develop systems and provide something like that.

When you talk about community health centers, when you talk about the
patients they serve, which is a sort of low-income sort of population,
community health centers work with very limited resources. The question that
they have to ask themselves is, you know: Do we have the resources to be able
to maintain a system such as this to provide a personal health record for
patients and all that?

Is there an interest within our patient population in this type of
information? Would they be willing to pay for it?

One of the issues that came up when we looked at our patient population is:
How many of them are actually using computers? We’re talking about — and it’s
not to diminish, you know, the value of that patient population — but many of
them do not have access with all the digital device to computers. So you may be
developing something in which case they don’t have access to that.

For those that do, and I did make this argument when personal health records
came out and relate it to any technology, as we move along in the future, what
we have seen are the children, you know, many of the kids now in school, they
are using computers and they will become the patients of the future and they
probably will have an expectation and will see some value in having these type
of systems. But for now, we’re not quite there right now.

I will tell you that I work with a technology work group that is looking at
a number of things and I did share this information with them and past them,
you know, to provide some feedback.

And one of the things that they provided back was that, you know, the
question they asked us: Who is responsible for this patient record? So, you
know, if the patient is responsible, who’s going to enter that information? Do
they have the sophistication to know what information to enter in there?

So they get these lab tests — there are 30 factors on a lab test; what
information do they put in there? Do they know what information to put in
there?

And so the question then becomes, again, liability issues. And I will read
to you what one of the emails that I got from a CIO in California. He says:

“PHR may be a liability issue. It depends on who updates the record.
Once recorded, a clinic is unable to alter medical records. Patients may not
have such regulations. So this will become a major trust issue and for trial
attorneys a boon. So many disclaimers will be required.”

I don’t argue. We’ll have to ask Cynthia and the other party that is
testifying here as to what type of disclaimers they have in there because I
know that health centers that work with attorneys very, very closely and are
very much involved in litigation issues from day to day will have them looking
at that and will want to be looking at what disclaimers do we have in there if
somebody else has access to these records.

So that is just an excerpt from an email that we got, okay?

They do talk about that the underserved populations don’t have the
education or training or technology to manage a personal health record. They
visualize that this would require extensive outreach or kiosk with support in a
community clinic or other settings to help them to access that information, put
information in there as such, because they wouldn’t understand it.

I’ll bring up a point that I don’t know how Cynthia is addressing this but
the question of language. When you’re dealing with a patient population out
there that the community health centers deal with where you have patients that
speak only Spanish, that may speak only, you know, one of the Asian languages,
what language is that information in there and as such, is there any value for
them if it’s not in the language that they understand?

So language is very, very important, and who understands that language and
what information is in there is very, very important stuff.

So that’s really my bottom line with it. I think that in terms of where to
go in the future, I think there is value with personal health records. I will
tell you that what I see happening with health centers is that they’re looking
more at the electronic medical records and then from there springing onto the
personal health records themselves, which would be sort of an outgrowth of the
electronic medical records to allow them to have that information.

Whether patients would actually be able to alter that information or not,
that’s a whole different question that will come out in the future.

Whether patients will be adopting this in the future, I think that if it’s
available to them, they will probably access that. Myself personally right now,
I wish I could go into my personal medical records that I just had from
everything that happened and be able to get that information. I don’t know
whether I have that access right now or not, and it takes going to my provider
to get that information.

So I think the jury is still out with regards to the extent to whether they
will be used or not. There is value in it; I do see some value in that.

So it’s my testimony. Do you have any questions?

DR. COHN: John, thank you very much. Questions from the Subcommittee,
comments? Paul?

DR. TANG: I was very encouraged by the work being done in both situations
which have a lot of similarity.

A question on the migrant farm workers. The authentication of both the
patient themselves or the provider, how is that done?

MS. SOLOMON: In the case of the patient, in this case, the member, when he
or she — actually this the process that I think is an interesting process that
the St. Joe system worked out.

And it is labor intensive in terms of getting people enrolled but what
happens is either to the Promotores or an outreach worker, the migrant worker,
the member, is told about VIA and what it does and then they actually talk
about privacy of information and how it’s protected and what their rights are.
And that’s given to them orally and also in writing in Spanish and English.

And they sign a little piece of paper that says “I understand I have
access to my health care information.” So it’s a good learning tool.

Then they’re given a log-in and password and they can change their password
at any time. And it’s using encryption, you know, SSL, to get in and out, so
they use a secure log-in and password.

In the case of the provider portal, we’re doing it in two ways because we
actually have two models.

In the first one with St. Joe’s, we actually went in and they signed up
their clinicians, and whether they were physicians or mid-levels or even
secretaries, and then there’s an admin person at St. Joe’s so that if an
employee, if a doctor, leaves, then that access to that chart goes away, if
they leave the clinic.

So they’re actually authenticated that way.

The other way is, in working with the Northwest Primary Care Association,
we’re probably going to look to them, that primary care organization, to
authenticate its members as they come into the system as we expand it.

DR. TANG: So one little glitch might be — I think you said the patient has
to give up their log-in and password to the doc.

MS. SOLOMON: One time. But then that patient can then — actually it’s a
good question — but then the patient could change that password tomorrow.

However, once they’ve given the provider the log-in and password and
they’re in that provider system or that clinic system, it doesn’t matter if
they change their password. If they want that clinic not to have access any
longer, they have to go through another process. Basically, even if I’m in VIA
and I change my password because I keep forgetting it or whatever, my clinician
still has access to my information; it doesn’t change on their end.

Again, that goes to using the Dot.net technology which is fabulous.

DR. TANG: Do you have — I think it was — 2,000?

MS. SOLOMON: We have right now — well, we’re headed towards 2,000 by the
end of May. We thought we were going to do it by the end of March, but we’ve
actually populated out Sonoma Valley. We’ve got everybody in that we can
possibly get, so we’re expanding. We probably will have a full 2,000 by the end
of — I’m going to say June or July, really, realistically.

But we’ve just received funding to expand this into Napa County and some of
the Central Valley communities.

DR. TANG: Do you have any sense of utilization — in other words, how many
of these summaries, the diagnoses and meds, are actually filled out and how
many times are they used? Do you have that?

MS. SOLOMON: Through the California Health Care Foundation, they actually
put aside some funding to do an outcomes analysis because we haven’t really had
that.

We can tell you anecdotally, and I think it’s exciting. One thing is that
we know these workers are using their email, and they’re emailing their
families in Mexico — that’s for sure.

I also wanted to say a little bit and give you two little anecdotal stories
to give you — not that I disagree with John; I think he brought some really
good information about some of the barriers and they’re all accurate — but
some of the ways that VIA has made a difference, and this is why I love this
project so much, is that — the best example, the most dramatic, is that we had
a farm worker a year ago, a year and a half ago, up in Healdsburg who had renal
failure and had to have dialysis three times a week. And he didn’t speak
English.

And they got him enrolled in VIA because he had been going to different
hospitals. And he was on his way to catch the bus to go to the renal clinic and
it was late and I think he was a day off or something. Anyway, he was
symptomatic; I guess he was sort of weaving along the road.

The sheriff pulls up and thinks he’s drunk, is going to take him in, and
this guy pulls out this card that says his name and that he has renal disease
and the name of the clinic. And the sheriff took him to the clinic.

I mean, that is very empowering and it’s cost effective in health care.

[Laughter.]

MS. SOLOMON: Another, just one more — actually two quick examples.

Another one is this worker had a claim against an insurance company and he
couldn’t get it settled. He had money coming to him and he couldn’t get it
settled.

And in our community, if you don’t have a Post Office box where the farm
workers live, if you can’t afford a Post Office box, or you can’t one, then you
don’t get mail delivery.

So Rick, an outreach worker, enrolled him into VIA and then showed him how
to use the email, then helped him draft an email to the insurance company. And
within three weeks he got a claim paid.

So what it’s doing — I mean, it’s true that there are barriers, but it’s
changing, and there are kiosks; there need to be more. And there are libraries.
Our farm workers are now using the library.

But they’re now starting to feel a part of the community, that they belong
and that they have rights, and that’s the change that I’ve seen and that’s why
I do think it’s exciting.

And, John, we’ve talked a lot by telephone, but I think everything he
brought us is accurate. You know, who owns the record? What are the legal
implications?

But we are cutting edge here. We don’t know. We’re making the rules as we
go along, and that’s why we look to organizations such as yours for the
guidance. The provider portal wasn’t my idea. But the guy who came up with it
was great because that made a big difference to the providers willing to enter
information.

Now we’ll be looking at adding the ICD-9s and some of the SNOMED
technologies to the provider portal. Patients will never even see that. But
actually at some point we may interface into both the PHR and EHR. It’s a
natural assumption.

MR. HOUSTON: This is John. Cynthia, I think

that actually you are to be commended because you are addressing the
barriers that are out there and I think that is the value of VIA, is that you
are looking at what the barriers are and looking at what the solutions are for
those barriers. There’s value to that, lots of value to that.

DR. COHN: Other questions or comments?

MS. DEERING: I had a very small — well, I guess I had two questions, a
small question for you, Cynthia, and then I noticed that you took Social
Security numbers. I’m just wondering if there was any concerns about taking
Social Security numbers for these people.

MS. SOLOMON: Well, they don’t have to.

MS. DEERING: Okay.

MS. SOLOMON: That’s their choice.

In any of the PHRs, even in our other products, it’s there you can put as
much or as little information. So, again, it’s their private portal.

Can I go back and just add costs a little bit? Do I have the right to do
that?

I just wanted to answer your question. Some of the farm workers, they also
put in a matricula. They might not have a Social Security number but they’ll
put their matricula number in. But they don’t have to put that information in.
That’s just for their benefit in case they lose it or forget it.

I want to just talk because I think it’s a big issue, and we were very
fortunate with the nonprofits that we worked with to have the support of grant
dollars to really look at this technology and I’m very, very grateful.

But one of the grant outcomes with the California

Endowment and RCAC was: What is your sustainability plan? What are you going
to do to keep this going? And so I think that’s important to know.

So we actually looked at it, and we looked at it being a web-based
interface using the Dot.net technology.

What would it take on an annual basis if we had 10,000, 20,000, 100,000?
What would those costs be?

And what we are really coming up to is that we can actually make, you know,
the changes because it’s web-based — you know, the support is ongoing. So we
do all of our own support.

So we actually came out and I addressed the Office of Statewide Planning
and Development two weeks ago and said, okay, this is the cost for
organizations that would like to join VIA, that would like to offer VIA to
their families.

There’s a $1500 set-up fee, and that set-up fee is really — we have the
educational materials, it’s very user friendly, but that’s a one-time fee.

Then there’s a $1200 annual fee — $100 a month — and then there’s a $1.00
per user per year fee for the email.

So that is the total cost for organization.

Now, if an organization comes to us and says, well, we have 5,000 workers
that we want to go in tomorrow, we might have to adjust the $1.00 per month
because of the server costs. We use a co-location facility with multiple
servers and very secure locations, so that’s our biggest expense, frankly, is
the co-location facility and the redundancy that we have to provide.

But basically we’re talking — and I’m saying this because as a consultant
years ago who went in and installed practice management systems in medical
offices where those poor docs paid $60,000, $70,000, $80,000. It was obsolete
in four years.

The wonderful thing of the web. So we’ve worked very hard at building a
sustainability model.

DR. COHN: Okay.

MS. DEERING: A question for Sarah. Given the fact that you are just starting
out and your initial focus groups were so negative among the providers, what
will you do? What did that say to you? Are you going to do anything differently
or just keep plugging ahead and write up the lessons learned?

MS. BRACHLE: Probably a combination. We’ve checked out Cynthia’s site and
we’re going to be talking with her after the presentation, actually —

[Laughter.]

MS. BRACHLE: — to get some of her lessons learned.

But we’re looking at the development of the tools, an iterative process
with the patients.

We are acknowledging that this is the first time that folks are hearing
about the PHR, so we have some education to do as well as, you know,
descriptive feedback on what a tool might look like.

So I think we’re not giving up hope at this point. I mean, it’s a five- to
six-month process. So we will have future conversations. We can build something
that they will feel is helpful to them.

MS. DEERING: Well, lessons learned are always valuable.

MS. BRACHLE: That’s true, too.

DR. COHN: Right, okay.

I actually think at this point we probably need to wrap up and spend a
couple of minutes talking about next steps and more. We want to thank you both
for coming and, John, thank you very much for being willing to call in. I know
this is not easy after an injury, so we really do appreciate your
participation.

AGENDA ITEM: Subcommittee Discussion — DR.
COHN

DR. COHN: Okay. So why don’t we turn to Subcommittee discussion for a
couple minutes. I think we’re running a little late.

Now, obviously we’re meeting tomorrow at 8:30 in the morning. I do know
that Linda Fischetti — you’re not going to be able to be here, as I
understand.

One issue that I wanted to bring up just to talk about for a couple minutes
is I think we’ve heard now a couple times we’ve talked about taxonomies, we’ve
talked about definitions, we’ve talked about a whole range of ways of our arms
around all of this.

You know, I was sort of struck by David Lansky’s presentation, not that he
has the right words, but at times when you’re having trouble and tripping over
the words, sometimes what you need is a different word to describe things. And
I’m wondering if we maybe need to — I mean, I’m not suggesting in the next
five minutes we come up with the word or the way to describe all this stuff,
but I did know that Linda, I think, was willing to maybe lead up an effort or
help us see if there’s some more global concepts that we can use to describe
what it is we’re talking about.

And, Linda, do you want to talk about that at all?

MS. FISCHETTI: Sure, thank you.

Specifically, if you notice in my presentation this morning, I stayed as
far away as I could from actually suggesting words because in a vacuum so often
things get picked up and used unintentionally — and, you know, tethered and
untethered has quite a life cycle with this and I’m not sure that that was
originally intended, but in a vacuum things get picked up like that.

Dr. Tang was mentioning that probably one of the best ways to do this is to
do it in large group, and I concur with that. When definitional work is done
consensus in large group and can be done in a way that you get everybody’s
views on the table immediately, it does have more sustainability and more
uptake and is more applicable.

So, Dr. Tang should — I defer to you to talk about some of the ideas that
you had about possible groups that we could get together?

DR. TANG: I don’t know that we looked — I mean, when we said
“large,” I don’t think you can really large with it. What we were
talking about multi — you know, the different groups like AHIMA certainly has
an interest in this. Technology builders have an interest and the standards
organizations have an interest.

At any rate, I think that your point is well made. I don’t know that just
because there’s confusion, we should make up a new confusing term, but there
may be one that’s a big more encompassing, descriptive.

DR. COHN: So are you suggesting you guys go off and ask them and see if we
can get — or are you going to try to get them all together to talk to them or
— to be determined?

DR. TANG: Yes. I mean, you’re not in a position of charging off that, are
you? Or —

DR. COHN: Well, I’m in a position that I can sort of ask Linda to see if
she can work with them to put things together. I’m certainly not in a position
to charge you to go off and —

DR. TANG: Well, another possibility is Dave Lansky has that group, Linda’s
a part of it, AHIMA is a part — so there actually is a group designed for that
kind of consensus building. So maybe we can bring that back to David and see if
that group can work on anointing a new phrase.

DR. COHN: Yes. Well, certainly, you know, from my own needs or whatever,
there’s this sort of — I mean, I keep talking about the personal health
dimension and maybe that’s what we come up to. But, you know, somehow an
umbrella term that at least starts out vague and then we can decide what sort
of pieces there are, or somebody can decide what sort of pieces there are to
it.

And I think you did a really job starting to talk about the axes and the
elements and I think the AHIMA definitional work sort of essentially fits into
there. You know, various other pieces probably fit in, but the question is
trying to get a — I mean, if we can sort of explain to people what it is we’re
talking about in whatever report we try to produce and sort of go from global
to more specific, I think we will have — I mean, that’s one thing that would
be helpful to everyone. Cynthia?

MS. BAUR: Well, I was just going to say in the recent issue of the Journal
of Medical Internet Research there was a review and synthesis piece on e-health
as a term and looking at the various definitions that have been proposed and
what does it encompass.

I mean, I would recommend that that article might be one of the starting
places because it is very comprehensive in looking at all the definitions that
have been proposed in this area.

And I know that for a report that we’re trying to wrap up that includes
PHRs, we’re using the term “personal e-health tools,” or
“consumer e-health tools,” and PHRs are just type of that one
function, one overarching purpose. So we’re going to use either the term
“consumer” or “personal,” so “consumer e-health
tools.”

MR. BLAIR: Would you send that article to us —

MS. BAUR: Sure.

MR. BLAIR: — because for years I’ve wondered what the definition of
e-health was and it’d be nice to know.

DR. COHN: Yes.

MS. BAUR: Yes, and I believe Don Detmer was involved in that article, as I
recall.

DR. COHN: Oh.

MR. BLAIR: So, Simon, I think you have a good idea to get a handle on this
name.

DR. COHN: Cynthia, I’m delighted that you’re already sort of trying to deal
with this one, so maybe we could ask the two of you to sort of —

MS. BAUR: Yes, and I’d be happy — our report is still in kind of bits and
pieces; we’re trying to pull it together over the next six weeks. But I’d be
happy to share the introduction that talks a little bit about this terminology
issue with you.

MS. FISCHETTI: Okay.

MR. BLAIR: Good.

DR. COHN: Okay. Great. Well, that may be helpful and maybe someone would
just bring back or email back and forth between meetings and maybe come to —
it’s really not our job to come to agreement. It’s just that I

do think it would be useful as one of the end products — not end products,
but one of the next products that we come up with is sort of a slightly better
understanding of when we say something, what we mean, since I think in all
these hearings there’s been a lot of talking past each other with terms that I
think we all meant something different by, so —

MR. BLAIR: Could I throw one other piece in there?

DR. COHN: Sure.

MR. BLAIR: In the work that we’ve done in New Mexico in trying to, you
know, establish our RHIO there, we haven’t found any single place that has a
definition of the RHIO, and the HIMSS RHIO task force also is laughing about
that.

You know, the whole nation is working on RHIOs and there doesn’t seem to be
a national definition. So if anybody has a national definition that they’ve
seen, would you share that with us?

MS. FISCHETTI: So, Simon, what I’m hearing you saying is that you would
like for me to continue to pursue this —

DR. COHN: If you would.

MS. FISCHETTI: — the definitional work —

DR. COHN: Yes.

MS. FISCHETTI: — pulling in other groups, using the resources that we have
here and Mary Jo will give me a specific, well-worded tasking so that I know
exactly what I’m to be reporting back on.

DR. COHN: Yes. And I think the slides, the overheads that you’ve created,
are actually a very good place to start the conversation if you’re talking to
other groups.

MR. BLAIR: Let me add one other thing. Linda, HL7 has this EHR TC I think
you’re familiar with. One of the sigs in that is working on the definition of
interoperability and struggled for quite a long time, but one of the members —
I don’t remember the name of the person — instead of coming up with a sentence
or two or three, came up with a framework.

And I thought that was a major breakthrough because it’s such a
multi-faceted concept that tends to change depending on the context you’re
talking about. I thought that was very helpful.

That may be something that I think would be useful to share with the NHII
task force.

MS. FISCHETTI: Okay. I’ll have to go look into that. We only chartered that
group probably two months ago, but I’ll definitely find that and either include
the methodology or the framework if it’s applicable here or just make sure that
that information is shared with this list.

MS. DEERING: I just wanted to mention that there are two ways to approach
this.

Simon, I think what we’re hearing right now is an attempt to come up with a
global framework that can then encompass instantiations down below it.

The other way is to lay out the instantiations, which were now much clearer.
We may not be able to lump them together.

And I’m just putting it out as a question whether there would be a value to
try and use the axes which you suggested. Something like that would then
eventually lend itself to Jeff’s request earlier this morning that eventually
we have the pros and cons for public health and clinical care and personal
health of the different instantiations, and I’m just asking whether we would
discern something of value that might help us then determine what the umbrella
was. But you can also do both at once.

DR. COHN: I thought that was very good. Now, the question is what else did
we come out today that we need to talk about this moment before we forget it
till tomorrow.

DR. TANG: I thought one of the main goals we had for this morning, or today,
was business model and different perspectives on the business model. It’s not
clear to me that that was actually addressed with a whole lot of emphasis.

DR. COHN: Yes, and I think we’ll have the economists tomorrow, as it turns
out.

DR. TANG: Well, yes, it’s one thing for the economists to say something;
it’s another for the provider group and the rest —

DR. COHN: Yes, that’s a very good point.

DR. TANG: — to give their perspective.

The other piece that came up earlier this morning was this whole privacy and
I really think when David Lansky was saying, you know, we have a rich set of
policies for HIM, managing health information, in the paper-based world,
hospital dominated and we’ve never faced outsourcing and the management of
paper records, your health information.

Now all of a sudden there’s now commercial interest to do this. I think we
need to get a policy perspective on this, an approach, it seems to me. I’m
merely looking at the public interest.

DR. COHN: John Paul, did you hear that or not?

MR. HOUSTON: No, it was in and out completely, so —

DR. TANG: So I think the morning discussion about the care and feeding of
health information when it’s not owned and operated by the provider, which is
the traditional setting for paper-based records for which there are policies,
seems to me that there’s a big void and a call in the public interest to try to
either work on or recommend that work be done on creation of policies,
particularly relating to PHR as they are owned and operated by non-provider
groups.

DR. COHN: Or non-covered entities.

DR. TANG: Non-covered entities, right.

MS. DEERING: I wanted to sort of ask a question, if I could, and it’s back
to you, Paul, about the business model. And I think what we may be hearing
tomorrow — I’m not sure anyone is going to articulate a business model
formula; I don’t even think the economists are going to do that.

I think what they were struggling to say is where I sat, this is what I saw,
and we still didn’t necessarily always get some of the answers that we might
have liked. But I’m not sure that they were trying to project more specific
value propositions as opposed to full business models. So maybe it was a fault
of the questions that we asked them or maybe where they’re placed wasn’t
something that would naturally come to them to describe a more formal. Jeff?

DR. COHN: Now, Jeff, did you have a comment? Then Cynthia.

MR. BLAIR: Yes. I felt that there was a nexus between the business model and
the issue of concern about the privacy issues in the sense that it’s an
emerging area and there is no single business model and I don’t think that we
want to define one or create one because a lot of the new ones that are
emerging are creative and provide value in ways that other people didn’t
anticipate before.

And I thought that that was one of the things that fed in to how do we deal
with privacy in this new area, is that we can’t really set up this whole big
construct like we did with the privacy regs for this area, but there’s sort of
this minimum that while the public is making the choice, that the choice be
informed choice while it is still a free market for how long it exists with all
of these new, wonderful constructs that are coming out.

And the part that’s informed is that the public needs to know on all of
these things, as a minimum, who has access to that data besides them and what
is the funding business model, so that the consumer could make the choice and
we may have, you know, 20, 15, 30 or more different ones meeting the needs of
different people and they’ll make a choice.

But at least it needs to be an informed choice.

And this also tied in with the concern that a surprisingly large portion of
our population is very concerned about the privacy issue and we don’t want
their lack of trust to derail or impede our progress towards bringing the value
of health care informatics to the rest of the health care industry.

DR. COHN: Okay, Paul, it looked to me like you had a comment on this, and
Cynthia. No? Okay. Cynthia, did you have a comment on this?

MS. BAUR: I just wanted to go back to this question of the business models
or what we did or didn’t hear is the issue that we’re trying to actually answer
the question of what are the business models. Is that what you were expecting
the Committee to do? Or is the issue more if we can’t establish that there are
viable business models at least evolving, then that would say something to the
Committee about whether or not we would, you know, even write up a report on
PHRs because it just seems too early to really say much if there’s no viable
business model?

I’m just trying to clarify what in your mind what — you know, getting
answers on the business model represents.

DR. TANG: So what are the possibilities in terms of business models? Can it
exist in the private sector alone without new policies to create new
incentives, for example? Or because of some private sector business models, do
we need to have policies that protect the interests of the public? I mean, it
can go both ways.

So, an example business model we heard Blue Cross/Blue Shield paid for a PHR
for their members. They had a low response rate.

And then we heard — you know, I had that question, well, maybe — and Doug
agreed, I think — that there may be a different venue where it would work
better, let’s say, with the provider.

So one question is: Could a payer work with a provider to sponsor the thing
to sustain the technology for the good of the patients? At least one person’s
view was yes. So that’s a business model. Because we have this problem of who
pays and who benefits kind of thing.

We heard a couple other business models. One is we have a completely
separate venture that uses data, reuses data, in some unknown way at this point
and that’s what funds it.

And then the third one was asking the patient to pay for it directly, was
one of the ones we heard just the last panel.

So those are three kinds of business models, and then I think the question
is: Is that enough? Can we get PHRs deployed using one of those three, or
others?

MR. BLAIR: But new business models are continuing to emerge which are adding
new value. And so I sort of feel like it’s too early for us to wind up saying
there’s one or two or three, you know.

DR. TANG: Oh, no. I was just giving an example. If we could vet out
different kinds of business models — I was hoping we’d hear a bit more — then
we could sort of see what the field of play is and then what areas do policy
have to either stimulate other business models or protect against some of the
ones that may arise naturally.

DR. COHN: Bob, you’ve been very patient.

MR. HUNGATE: Well, I’m trying to make sure that I phrase my observations in
a constructive way and don’t expose too much of my own ignorance because as I
listened to the discussion of business model, I think about the criticality of
the privacy issue, as Jeff has alluded to.

And I wonder about whether we have to take some overt action to talk about
the contractual nature of what’s going on there in the content of the agreement
between a vendor — you know, without speaking about the models themselves, but
to talk about what is the content that’s at issue in privacy and security that
must be addressed in the contract, that as I think about, you know, all the
agreements that I make with Adobe that I accept, you know — I click the little
box at the bottom; do I read all that stuff? No way.

But I think that when we talk about privacy and security, we really want
people to read it because we need people to understand what is involved here.

And so talking about the generic problem of dealing with privacy and
security in the multiple business models of PHRs, it seems to me this is the
place where the decisions are going to get made and that if we could outline
the content, that we might help that.

Or maybe that’s just off the mark, but it just feels to me like there’s a
need there that we might be very well placed to address.

DR. COHN: I think you’re agreeing with Jeff.

MR. HUNGATE: I think so.

DR. COHN: Okay, good –okay.

MR. HUNGATE: I think so. I’m just trying to —

DR. COHN: And you’re not specifying that we need to have the content of a
statement on this.

MR. HUNGATE: I’m not trying to say that we make all the rules. I’m saying
that we make sure that we make all the questions get addressed.

MR. BLAIR: Part of the thesis of what I was trying to get to was if we
attempt to do a lot of principles or frameworks or regulations, we run the risk
of limiting the development of new business models that will offer new value.

And so I’m hesitant for us to go down a path of trying to construct
something that’ll become a regulatory framework at this point for personal
health records.

And my thought was that the only guidance that I think does apply across the
board is whatever business model comes forth that offers value to patients or
providers or to providing information for public health, whatever business
model comes forth, the one requirement is that they provide the consumer
informed choice about those two issues — is where does the data go and what is
the business model, in terms of where the money comes from?

DR. COHN: Okay. And without trying to solve this problem today, I think we
have bookmarked this issue as an important issue for us to consider further.
Maybe that should be a case where we actually ask for some focused hearings on
actually the issue of privacy.

We may still come out of it with this view of just making a comment that the
Secretary needs to be aware of this or we may come up with additional
recommendations for the Secretary. But that will be to be determined.

Now what I’m going to suggest at this point, since we’re running a little
bit late and we’re running a little bit late from what was going to be a late
ending anyway, it’s now 5:45. I’m going to suggest we adjourn for the day and
reconvene tomorrow morning at 8:30. I’ll let you all sleep on it.

[Meeting is adjourned at 5:47 P.M.]