This Transcript is Unedited

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

National Health Information Infrastructure (NHII) Workgroup

HEARINGS ON PERSONAL HEALTH RECORD (PHR)

January 5, 2005

Room 705A
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201

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

TABLE OF CONTENTS

NCVHS NATIONAL HEALTH INFRASTRUCTURE (NHII)

WORKGROUP MEMBERS:

  • Dr. John R. Lumpkin, Chair
  • Jeffrey S. Blair
  • Dr. Simon P. Cohn
  • Dr. Richard K. Harding
  • John P. Houston
  • Dr. Stan M. Huff
  • Robert W. Hungate
  • C. Eugene Steuerle
  • Dr. Kevin C. Vigilante
  • Mary Jo Deering
  • Cynthia Baur
  • Jay Crowley
  • Linda Fischetti
  • Kathleen Fyffe
  • Robert Kambic
  • Dr. Eduardo Ortiz
  • Amy Patterson
  • Anna Poker
  • Steven J. Steindel
  • Karen Trudell
  • Cynthia Wark
  • Michelle Williamson
  • Dr. William A. Yasnoff

P R O C E E D I N G S [9:08 a.m.]

AGENDA ITEM: Welcome and Introductions – DR. SIMON COHN, Chair Pro Tempore

DR. COHN: Now, good morning. I want to call this meeting to
order.

This is the first day of two days of meetings of the National
Health Information Infrastructure Workgroup of the National Committee on Vital
and Health Statistics. The 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, a member of the Committee and the Associate
Executive Director for Information Policy for Kaiser Permanente.

I’m actually chairing today and standing in for John Lumpkin,
our Chair, who is phoning in and I think will make some comments after we’re
done with introductions. Obviously, as we commented just now, John, hopefully
you will be feeling better soon, and we’re sorry that you were overused during
your holidays.

Obviously, I want to welcome fellow Subcommittee members, HHS
staff, and others here in person and welcome those listening in on the
Internet. And apparently we are not on the Internet yet; we’ll let everyone
know when the Internet goes up.

Obviously, for when we are on the Internet, I do want to remind
everyone to speak clearly and into the microphone.

With that, let’s have introductions around the table and around
the room. For those on the National Committee, I would ask if you have any
conflict of interest related to any of the issues coming before us today, would
you so publicly indicate during your introductions?

With that, Mary Jo, would you like to start with the
introductions?

[Introductions. No conflicts of interest stated.]

DR. COHN: And John, would you like to introduce yourself?

DR. LUMPKIN: I certainly would. Can you hear me?

DR. COHN: Great.

DR. LUMPKIN: My name is John Lumpkin, and I am a Senior Vice
President of Robert Wood Johnson Foundation and I am Chair of the Workgroup and
the full Committee.

DR. COHN: Okay. Do you have any conflicts of interest today?

DR. LUMPKIN: I guess I should probably state that, as you note,
there are two of our staff who are there and we’re very interested in the
subject as a co-funder with the Department, which is not a conflict but I
thought

I should at least share that.

DR. COHN: Okay. And I guess I should chime in also that my
organization, Kaiser Permanente, is of course very interested in this whole
area, and actually we’re having one of my colleagues, Dr. Andy Wiesenthal,
testifying this afternoon, so in the interest of full disclosure that everyone
should know. But I don’t think the topics he will be discussing will be obvious
conflicts of interest.

Linda?

MS. FISCHETTI: The Veterans Health Administration will have two
testifiers as well. I didn’t mention that earlier.

DR. COHN: Okay. Linda, thank you.

Okay, now the focus on the next two days is on personal health
records, and actually this is the second set of hearings on this topic and I’m
sure not the last.

This morning, we begin with a discussion of Federal policy
issues related to personal health records. I think first, Cynthia Baur. We’re
happy to have you here and thank you for taking the lead.

And then David Lansky will be following up with additional
information and perspectives, followed by an open discussion.

Our first panel of the morning, which will be after the break,
is on the consumer perspective, which will be Panel 1, and then it’ll be
followed in the afternoon by a second panel relating to the consumer
perspective.

In the mid-afternoon, we then have a panel on sort of
provider-based perspectives relating to personal health records. Then there’ll
be a discussion as well as open mike late in the afternoon.

As always, I do want to remind everyone that we do welcome
comments and questions from those in attendance related to any of the issues
coming before us today. We will have a specific open microphone period late in
the afternoon in case anybody has any brief statements they want to make.

We also, of course, for those on the Internet listening to
transcriptions of this, do welcome emails or letters on any of the subjects
coming before us today or tomorrow.

Now, today we hope to adjourn by five o’clock. Tomorrow, we’ll
start off about 9 o’clock.

My understanding, in the agenda it appears that there’s a
discussion and then a panel; I think we’re going to try to move the panel
forward so that becomes the first order of business tomorrow morning, if we can
do this logistically, and then have discussion after that, with the intent that
we will be adjourning by about 12 noon tomorrow. Hopefully, that is agreeable
to everyone.

Any questions or comments before we lead off into the first
panel? John, do you actually have any opening comments that you would like to
make?

DR. LUMPKIN: Sure. I think I would just like to add emphasis
that as a Committee, when we introduced our vision of the national health
information infrastructure almost four years ago now, we believed that if this
was going to work, it needed to work in three dimensions.

And one was the health care provider, the other one was in the
population health dimension, and the third was the personal health dimension,
of which a personal health record is an important tool in that respect.

And I personally firmly believe, and I think that others in the
Committee that really for us for us to make the progress that we’re going to
need that patients need to be in a position of being able to be active
participants in their care.

Clearly, those studies that have come forward, the chronic
disease models, others, have demonstrated that when patients are actively
engaged in the management of their own illnesses, partners with their care
givers, the outcomes are much better.

And so, having this hearing today and tomorrow, the further our
understanding of what’s going on in the field and what may be needed will be an
important step in enabling the information technology-based transformation of
health care, improving quality, effectiveness and efficiency.

So I would like to thank everyone who’s there in person, even
though I could not make it myself, and let’s have at it.

DR. COHN: Okay, John, thank you very much.

I also I think would emphasize, as John has, that many people
are in the midst of writing responses to HHS from the requests for information
on the national health information network and at least in some of the draft
responses I’ve been seeing and been asked to comment on, I’m seeing more and
more thought being put into the issue of how patients relate and even
non-patients, healthy people who are not patients, relate to the issues of
electronic health records.

And obviously the issue of personal health records is really, I
think, an upcoming discussion item which I think we’ll see a lot more thought
being put into over the next year.

At least, that’s the opinion I’m getting as I’m seeing these
responses.

Now, with that, Cynthia, would you like to lead off? And we’ll
let Cynthia and David both make your presentations and then we’ll have
Subcommittee discussion, actually workgroup discussion. Please.

AGENDA ITEM: Presentation – CYNTHIA
BAUR

MS. BAUR: Thank you, Simon.

Again, I’m Cynthia Baur from the Office of Disease Prevention
and Health Promotion and the eHealth Advisor within the Office. And I’m just
going to speak for a few minutes to provide a frame on why ODPHP had asked
David Lansky, when he was at FACCT, to undertake this study.

For several years, ODPHP has recognized the potential of
personal health records as a public health tool to enhance traditional
prevention activity.

The Department has many large programs such as Medicare and the
chronic disease programs, and although they affect a large number of people,
they do not reach many segments of the public, particularly those in need of
preventive health information and services, nor do these programs cover many of
the prevention and information activities that HHS is already invested in.

Personal health records are a unique mechanism to engage
individuals at different stages, different life stages, in their own health,
and we also see them as a novel platform for prevention activities that could
include information, recommendations and attitudinal and behavioral messages.

Even though PHRs are tools for individuals for their own
health management, ODPHP perceives that PHRs can be used as a type of
prevention tool that can have broad population effects, and apart from what
happens with EHRs, intelligently designed PHRS that are supported by sound
distribution strategies have the potential to be a mass phenomenon.

So therefore we commissioned this study on the Federal role in
PHRs to identify the different perspectives and strategies that were emerging
across HHS as well as at DOD and VA. ODPHP is particularly interested in
learning about strategies that envision PHRs as public health-oriented
preventive health tools.

The findings of the study are intended to be useful not only
to our office but also to the agencies as they develop their own activities.

Just to be clear, the paper, or the study, was not intended to
be an inventory of what Federal agencies are doing in PHRs; it is intended to
identify points of consensus and disagreement as well as critically analyze the
choke points, decision points, and opportunities that the agencies are going to
face in the near term.

So with that, I’d like to turn it over to David for a
preliminary report on the findings from the study.

DR. COHN: Okay. And, David, I do want to tell you that we are
on the Internet at this point.

AGENDA ITEM: Presentation – DAVID
LANSKY

MR. LANSKY: Good morning, everyone. Thank you, Simon. I’m glad
to be with you again.

In the past, I’ve spoken with you about some of the broader
research that we at Markle and Connecting for Health have done regarding
personal health records and public interest in them.

And as Cynthia said, this time — as part of the continuity of
my own work with FACCT in the past and now with Markle — to support the
program here in looking at the various Federal activities regarding personal
health records and try to distill from what we can look at what’s going on
today, what are the common and divergent activities, where are their
implications for policy or for program design that we should all be sensitive
to, and just essentially distill what’s going on and then feed it back to
people in positions to influence the programs here.

We are at a midpoint in this project, so I want to caution you
that what I’ll report on today is preliminary. We have a couple more months to
distill what we’ve learned from our first round of interviews and discussions.
And I would actually hope in the course of our discussion this morning that
you’ll provide us with some perspective and feedback that we can capture in the
remainder of our work and the report.

In a nutshell, if I were to summarize what I think we’ve
discovered so far, at least what I’ve discovered, is that the perception of the
possible value in applications of PHRs from the very diverse Federal programs
with an interest in health is expanding, not contracting or converging.

We have more good, creative opportunities to explore how to use
a personal health record and the related systems in support of not only Federal
programs but Federal interests. And I’ll talk more about that.

Those ideas are expanding at the moment, and part of what we
will probably suggest in our report is there needs to be some degree of at
least not contraction but coordination in how the issues that are common to all
these expansive ideas end up being mapped together.

And I think further, following on Cynthia’s point, that the
question of what are the appropriate government roles is probably at the heart
of what we’ll be addressing in the report.

We certainly don’t know the answer to that question, but our
sense already is there needs to be some focused discussion, and this may be one
of the important forums for that discussion about – this is a new area; it
provides new opportunities, perhaps new risks, and should be viewed very
carefully as to where the government can be most appropriate and effectively
involved.

Let me summarize what we’ve done so far and what we are
observing so far.

The scope of the project is to review what we can of current
activities and interest in personal health records and related services,
identify what the policy implications may be from the current or projected
activities, and then suggest at least a framework for considering what the
appropriate Federal roles may be as this field evolves.

You see on the right a list of the agencies that we have spoken
to one or more representatives from so far. I think we had 13 formal interviews
up to this point.

I should mention that our team for this, working closely with
Cynthia, has been Susan Kanaan, whom many of you know, helping us with both
research and writing, and Josh Lemieux, who has been a FACCT employee, and
myself. We’ve been doing the bulk of this work.

I won’t directly cite or quote any particular reports from any
of these agencies, but I’ll try to give you a distillation of what we’ve heard
so far.

Maybe it’s self-evident, but the fact that all of

these agencies, of very large scope, have an active interest
and planning activity around PHR is itself an important point.

And some of them are talking to each other, some are not; some
are aware of other activities that overlap, some are not. There is not, to this
point, a consolidated or coordinated effort to have these different Federal
initiatives at least testing each other’s ideas with each other for possible
overlap or conflict.

In terms of why the Federal governmental programs are involved
in personal health records at this point, certainly a central guidepost is the
President’s announcement earlier, last year, that over the next 10 years we
would like to see a universal availability of a personal electronic health
record and there’s obviously great support for that from a number of people in
Congress and elsewhere in the agencies.

It is perceived that the personal health record may be an
important tool in achieving, as Cynthia just said, a number of goals of the
major Federal health programs, including public health goals.

Among these goals are patient-centered care; greater consumer
involvement in the health care system, as John said in his opening; improved
chronic care management, which is of course a major initiative of CMS and
others at the moment.

And I think what emerged from our interviews on this occasion
has been a lot of the Federal agencies that have been information suppliers or
publishers or disseminators see the personal health record as a new
distribution vehicle for the enormous body of health knowledge that’s available
through Federal activity.

I think a modest distinction I want to raise and stay with
this morning: To some degree, PHRs are seen as a way to extend current Federal
programs, simply a new distribution technology for an existing commitment or
strategy that a Federal agency may have.

Secondly, it is a new platform, and therefore even a new
strategy, to achieve goals that maybe haven’t been fully articulated or have
been articulated only in a very strategic sense but have not yet been put into
programmatic terms.

And that’s probably where the more innovative and edgier
thinking is going on as a way of extending strategic policy directions into the
program world. And I’ll give some examples of those.

Another reason for the Federal role in PHRs is the broad
understanding that the Federal government and its programs will be leaders in
American health care willy-nilly and it is very important that the positioning
that the Federal government takes with the NHII broadly and with the personal
health dimension specifically will be a defining channel in whatever happens
next.

Perception that unlike many other entities which have
particular interest in the health care system, the Federal government has the
most distinctively public interest responsibility, and to the extent the PHR
will touch upon the public interest and the public welfare, then the Federal
government needs to speak to the deployment of PHRs with some consciousness
around that interest.

While there may be a very successful private market in offering
products and services that enable PHR functions, they may not ultimately
address a larger public interest, and therefore there has to be some Federal
attention to this.

And finally, I think as many of you have worked very hard on,
the question of interoperability and connectivity in the health care system is
considered to be an underpinning of the viability of PHRs. PHRs are not widely
perceived to be a very powerful medium unless and until there is also connected
EHR information environment. So the Federal commitment to Dr. Brailer’s office
and elsewhere to the interoperable health information network is considered a
prerequisite to aggressive deployment to PHRs.

Those are all reasons for the Federal agencies to be involved.

At the same time, each of these agencies has its own purpose,
and multiple purposes, clearly, and it’s just worth reminding ourselves that
across the agencies that we collectively work with here in the government,
there are many roles, which implies different ways of involving with PHRs.

Many of the Federal agencies, of course, are providers. CMS in
particular and others are important payers, extremely important payers. There
are regulatory functions, research and dissemination functions, public
education and outreach functions including the prevention area that Cynthia
mentioned, policy-making and policy-setting activities which facilitate larger
national initiatives. And we also don’t forget the nation’s largest employer.

So, each of the agencies which touch upon each of these roles
seems to have a finger in the PHR world.

And we’ve talked in this setting before about the question of
what is a PHR, and I’ll just remind you of some of the categorical issues here.
First, that there is not a uniform understanding or definition of it. And in
our interviews with the Federal agencies for this project, we did not encounter
a uniform understanding of what PHR is, or should be, which I think several of
the people we talked to thought was a strength, that this was a very important
time to allow there to be pluralistic activity, and if anything, a
too-assertive Federal statement that “this is a PHR and this is not”
would be a premature limitation on the development of the field.

And they actually were, I think, humble and cautious in saying,
while we think we could be very aggressive in this area, we should not be,
because we don’t want to preempt other activities either of other agencies or
of the private sector.

The Connecting for Health project that Markle and Robert Wood
Johnson have supported has identified some of the attributes of PHRS without
saying they’re necessarily part of a definition: That the patient has control
and understands what’s in their personal health record, they have a broad
ability to access the contents of that record, it addresses criteria of privacy
and security, and there’s a transparency to the construction and access of that
record.

We talked in the earlier report about some other attributes of
the PHR, and here we note for your benefit that we realize these are illusive,
or not widely available, attributes of personal health records. That they be
longitudinal, or lifelong, is a very difficult thing to achieve in our very
fragmentary and pluralistic system. That it contain information from all health
care providers is difficult to achieve. And that information exchange, given
the limitations of our national platform, be easy is difficult to achieve
today.

And finally I want to mention the reality, and I think the
Federal agencies we talked to understood the reality, that there are many
flavors of implementation. Regardless of what attributes or definition you
ascribe to, today, in reality, the way these things are going to be offered to
the public vary very widely.

The medium, whether it’s on the Web, whether it’s on a CD,
whether it’s on paper, whether it’s on a USB stick, the media of distribution
and support vary widely. The contents, the data contents, vary widely, and the
functions vary widely.

So, with lack of uniformity on any of these foundational
elements, we see a great variety of manifestations of PHR across the Federal
agencies.

As I mentioned earlier, there are several different categories
of ways the Federal programs are considering being involved with PHR. One is
to, as I said earlier, extend and enhance current “business as
usual.” It’s a new platform to deploy something an agency is already
interested in doing.

Secondly, it may enable new agency roles and activities, and
the agency may go into new areas and look at the wider health care environment.

In this case, there may be a possibility for good or ill of the
Federal government playing a role that it has not played before which may be
perceived as stepping on another entity’s role in the private sector or in
other parts of the public sector.

And then, thirdly, a number of people spoke to us about their
vision, and, as John suggested in his opening comment, that the PHR is an entry
tool; it’s a wedge into fundamentally transforming how health care is
organized.

And here, of course, is the most complex, uncertain and risky
area of activity as the PHR is considered to be a new means of health delivery
and what Federal role might be engaged there becomes a concern.

Let me just tick off some of the things we heard that the
agencies have mentioned to us that they are now doing or anticipate doing.

I just mentioned the visioning and strategic leadership
category. People perceive the PHR as a way to improve quality, safety and
efficiency at the foundational level to fundamentally change the opportunity
for patients to get high quality and safer care.

It’s a platform for envisioning a new health care and public
health system for these goals.

People have very bold visions for what this technology can
bring about, and an important and probably very optimistic part of this work
has been to hear how many people and how many agencies see this as the first
opportunity really to completely capture the relationship with the patient and
give them more control over their health care experience, similarly providing
direction for modernizing and redesigning the delivery system in health care,
and finally, and very importantly for many of the Federal agencies, providing a
platform for bio-surveillance, drug event monitoring, adverse event reporting,
really creating connectivity to the public around health information in a
two-way exchange.

The second category we heard a lot of almost, I could say,
unanimous agreement about was the support for standards-based approaches to
health informatics broadly and health data, capturing data exchange.

I think everyone we talked to agrees that there has to be
increased standardization in the information infrastructure and the Federal
agencies are critical to supporting that process. Some of the distinctively
Federal roles are:

Providing some integrating tools and functions that the private
sector won’t necessarily do in individual segments.

Giving attention to some areas that have not yet gotten a lot
of intention, and in particular the question of patient-supplied data, the
patient reports of health status, symptoms, medication adherence and so on,
which don’t have standards in the clinical-medical arena, but if we begin to
capture this data from patients, there will need to be such standards, and that
may be an opportunity for Federal leadership.

Cutting across the various standard-setting bodies is a
Federal role.

There was a perception the work of CHI that has been important,
continues to be important, as a unifying Federal statement about standards.

And in the same fashion, creating a tipping point: The Federal
action where it’s consolidated and clear does indicate to the entire health
care marketplace a direction to proceed.

A third category is regulation on privacy and standards, which
was essentially to support and extend the HIPAA privacy rules and some
attention to both FDA and CMS around agency regulatory functions and how the
PHR might affect those.

I say parenthetically it didn’t come up in these interviews,
but that’s a particularly important consideration at the state level and it may
be worth some additional discussion about the state-federal interplay on the
privacy and data regulatory functions.

The fourth category of commentary we heard was in facilitating
the evolution of PHRs themselves, of the product or service we think of as a
PHR.

Several agencies used a phrase like “showing the
way” – that is, the very significance and scale of the Federal
programs, by taking action in the personal health record space, especially in
terms of a large-scale deployment, will influence what else happens in the
country and what industry does.

Similarly, already through the VA and other programs, the
ability to do early deployment and collect data on early utilization of PHRs
and the support of research around that will continue to be an important role.
The opportunity, because many providers have contact with Federal programs, to
reach out to providers about how best to participate in PHRs was suggested to
us.

And then there’s a number of Federal agencies interested in
what you could broadly think of as social marketing, or public education,
around how you as a consumer, a beneficiary, can take more advantage of your
health information, using these tools.

And finally, and maybe most obviously and has actually
probably moved the fastest, has been to provide direct services to covered
people, whether they’re employees, military families, veterans around the
personal health record as part of their health care package. And that includes
both developing personal health record product and tools and potentially
purchasing them through the private marketplace.

A second component of that direct service element is to be a
data supplier to a private sector PHR environment. So you could imagine the
Federal data resources being made available through a standard interface to
those who offer PHRs to the public as a way of populating the PHR.

And then, thirdly, and we heard a great deal about this, was
the populating of other Federal content into the PHR through a variety of
means. And there are many sources for that.

At this preliminary point in our digesting of all this
information and perspective that we’ve had, and as Cynthia said, we haven’t
attempted to do an inventory or to look closely at specific products and
programs – this is a very modest project – but essentially we’ve
distilled two categories of issues that deserve some attention, we think.

One is in a category which is not particular to the Federal
government or Federal programs — it’s just this is the state of PHRs today and
some of the issues that everyone, including the Federal agencies, need to think
about – the first is privacy and information control, including how the
public perceives privacy and information control, independent of what actual
controls and security considerations are in place.

The second category is security, and again, public perception
about security of health information in this environment.

The third category are legal issues.

The fourth are cost – who pays for, who supports, the
deployment of PHRs.

And finally is interoperability both among PHRs – if I go
from one health organization that provides me with a tool to a new health
organization, are those tools going to be interoperable? And in turn, is my PHR
interoperable with the health care-installed environment?

The second category of issues, which you see depth on, is
those that are distinct to the Federal agencies, where we heard Federal
officials tell us, here are things that are on our minds and that we need to
address or have help addressing.

So the first one is: How do the anticipated roles in and uses
of personal health records relate to the larger health objectives of the
Federal government broadly, of HHS as one important agency, and of the
individual departments and agencies within HHS?

I think my sense – this is an informal observation –
is that we have people, at the ground level in some cases, following and
developing ideas around personal health records and now asking themselves: How
are these compatible with, how do these best extend the larger, strategic
imperative of my agency? So there has to be a knitting together of practical
program issues and strategic issues.

Secondly, under financial costs, depending on what role these
different agencies might choose to play in support of personal health records,
what costs will they face and who will pay those costs and how will those costs
be absorbed? This again is true of the larger question, but the very specific
question for the Federal programs.

A third question, which is again a much broader issue which
has a great deal of attention right now – as Simon said in the opening
– is how will the Federal government promote interoperability broadly, and
in turn, the PHR piece of interoperability?

The fourth issue that will need consideration, and this
probably surfaces broadly for discussion across the agencies, is whether there
needs to be some consistent or even standardized approach to a personal health
record across all of the Federal activities.

So, if you will, if DOD takes a particular approach to PHR and
VA took a different approach and Medicare a third approach, for a person who is
going to pass across all three of those programs in the space of a few years,
is that a problem or not, or to what degree should there be uniformity –
to what level of complexity should there be uniformity across, let’s say, those
three agencies in the way they implement personal health record solutions?

And this is a question both at a broad policy level for the
nation and a more pragmatic policy level for the Federal agencies themselves.

A footnote, an important footnote, a corollary to that
question, is: Should all, or any, government agency define what a PHR is?

If any one major Federal agency were to say, here are the
requirements that we set for a PHR, whether it’s for reimbursement or for
interfacing or for data access, as soon as a major Federal agency has done
that, there will be a ripple effect across the pond of all the other Federal
agencies and the private sector.

At the moment, some Federal agencies have contemplated setting
such requirements. And again, as I said earlier, many of them have looked
across the abyss and said, wait a minute; we’d better not go there. But it
could happen, and there needs to be some consideration to whether or not that’s
a good idea.

If they were to do that, if any important agency or collection
of agencies were to set a Federal definition or requirements for a PHR, what
should be the criteria that that agency should use in doing so? What are the
categories of criteria they should use?

And this, of course, goes back to my first slide about what is
a PHR and are we ready yet for anybody to say this is what it is for the
purposes of reimbursement, data sharing, qualification for some programmatic
opportunity.

The fifth category are the privacy concerns and issues, in
particular the area where the Federal agencies are directly offering a PHR and
either acquiring or permitting a patient to acquire personal health information
and store it and transmit it with some amount of Federal imprimatur or Federal
funding or perhaps Federal certification.

Back to the last point: What are the specific privacy concerns
that arise, again, either in terms of actual legal risk or perception on the
part of the public of the Federal agencies having additional access to or
support of PHI in this context?

Some agencies, in the case of direct service providers like the
VA, and maybe less controversial but in the case of an intermediary role where
a Federal agency may be inching its way toward being a repository of personal
health information by the way it supports a personal health record, does that
create a new issue either of legal or perception risk for the government?

Number six is the flip side of number four: How should the
government position itself vis-à-vis the private sector? In particular,
where we have an emerging private sector industry – and you’ve heard
testimony from some of these vendors in the last hearings – we have an
emerging industry of innovators and developers within the health care system
and the technology industry who will hopefully continue to be creative and
innovative in what they develop.

What should the government posture be toward these innovators?
Is it supportive? Is it observant? Are you providing data opportunities in
partnerships with these innovators? Are you contracting with them as vendors to
Federal programs, and if so, using what criteria or requirements, and if so, to
what degree does that action itself limit innovation? How do you construct a
relationship with the emerging PHR environment which both stimulates innovation
and advances the Federal agenda?

Given the three largest players potentially here, the VA,
Department of Defense and CMS, and they are perhaps the most likely to be in
the vendor space soonest and with the greatest potential influence, should
there be some dialogue fairly soon to at least contemplate these implications
of their positioning in this arena?

Number seven on here has to do with regulation and
certification of the PHR. Many of the interviews we’ve had with Federal
agencies and elsewhere have highlighted some of the risks of PHR activities
that exist.

A totally unfettered environment where anybody can offer any
PHR to anyone may create some risks to patients and their well-being and their
privacy of information. Should the Federal government have any actions to
identify those risks and consider regulatory or legal protections? By what
process would the government come to a conclusion about that task, whether or
not to play any role in that arena? Or is it appropriate at this stage to wait
and see what emerges through private sector and Federal activity in the PHR
space?

And number eight, we have a laundry list of other questions
that have emerged in our discussions:

Do the Federal agencies emerging in this arena have the
capacity in terms of technology, policy awareness, consumer awareness and so on
to be effective in offering PHR services?

Is their track record credible with their own constituency or
with colleagues?

Is there consistency within and across agencies about the way
they are addressing these questions?

We’ve heard of some intra-agency where one agency has multiple
PHR activities that are not coordinated with each other, and of course there
are inter-agency differences.

And then, how will the public understand Federal action in this
arena, and will they trust it? Similarly, how will the private health care
provider networks and vendor industry understand Federal activity in this
arena?

And I guess that raises the larger question of: What’s the
communications component to any Federal activity in the PHR space?

In terms of what we heard from our interviews that we would
consider a consensus, first of all we heard very high level across all those
many agencies I listed of interest in PHR. This is an important emerging goal
and question for many agencies and very optimistically, in a time when a lot of
us are, I think, frustrated with many other challenges in health care, people
do perceive this as a fresh and positive opportunity, and very valuable, and
should be captured and encouraged.

At the same time, people are fairly sophisticated now about the
challenges of IT adoption and certainly the challenges of beneficiary and
consumer engagement so that I don’t think there’s a naïve optimism but
there is a serious optimism that can be supported.

The two roles I’ve mentioned several times are the ones that
keep surfacing. The Federal government needs to be a leader in standards-based
approaches including as it pertains to the PHR and it has to both encourage
innovation in this learning period.

So the delicacy of both being a standard-setter but not
creating barriers to innovation is the challenging line we heard a lot of
people talk about and be very aware of as a difficult balancing act to solve at
this point.

Similarly, on the next point, encouragement that the Federal
agencies must balance what they want to accomplish, why are they using a PHR,
for what particular purpose, and what metrics would they assign to their
ability to achieve this purpose, and allowing there to be experimentation and
innovation in the way these purposes are achieved.

Too heavy a hand will probably frustrate innovation and
learning and too light of a hand may create chaos, and that’s the balancing act
a lot of agencies are talking about.

The question of what do we mean by Federal action in this arena
is not resolved at all. It could mean an integrated, coordinated government
activity or it could mean a lot of things being done with Federal funding and
no particular coordination.

I think there’s agreement, we heard, that there should be some
degree of high-level coordination and conversation about what the goals are and
how the different activities are moving toward achieving them and that that
dialogue should include entities outside of government which are also very
active in this arena.

Now, as I said, we have a couple more months of discussion
internally in our project before we make recommendations to the Department, and
I would hope today we’ll have some conversation with you about where we are at
this point.

But here’s a preliminary sense, very preliminary, of what we
see to be some of the issues that should be raised for further discussion:

There should be some kind of a vision about the purpose of
personal health records and the associated functions in achieving Federal
health objectives. Simply saying everyone should have one is probably not
enough clarity to guide the more practical decisions, the policy decisions,
that will have to get made as individual agencies do their part toward
achieving that larger goal.

I don’t think we want to over-stress consensus or alignment,
but we do think there needs to be more awareness of activities across the
government and some degree of coordination.

Some of the key issues that need to be considered are:

The Federal access to personal clinical data – what
should it be, what’s appropriate? And what responsibility does the Federal
government have to access and use personal health information in support of
Federal objectives?

Cynthia mentioned in the opening their Department’s interest
in preventative measures. A number of agencies have been interested in
increasing prevention and health maintenance activities.

There is a potential slippery slope between a very broad
educational message targeting that message to people about whom we have certain
personal health information which puts them at risk for that information and
then getting into a centrally disease management relationship with those people
where more and more clinical information is exchanged with the government.
Where on that slope is the appropriate place for the government to be?

What is the Federal role vis-à-vis the private sector?
Do the Federal agencies facilitate a successful private market and personal
health record services and products or does it displace that market?

And many of you have heard discussion of the opportunity of
using some of the VA products and services as an open source, or public domain,
tool. What does that do? If that were to happen, what does that do to the
private market?

This is more of a strategic policy question: Are the Federal
agencies interested in pushing more ownership and control of health information
to the patient versus depending upon the provider networks that are currently
contracted with or owned by the Federal government to be the intermediary of
personal health information?

In a sense, how radical a vision of patient empowerment do the
Federal agencies want to undertake? And what does that do to the relationships
you have with other Federal contractors such as Medicare providers?

Thirdly, to what degree do all Federal agencies plan to make
use of, support or refer to a single model of what a PHR is versus developing
their own model of what a PHR is?

And if there’s to be any coordination across that definition of
what a PHR is, who is responsible for coordinating or enforcing that model?

Next, what are the Federal “policies” regarding
personal health records?

Is there a body of Federal policy regarding personal health
records that all agencies would conform to, including the patient’s right to
access, control, audit, authorize usage of their personal health records?

Should these be uniform across all Federal programs or should
they be uniform nationally?

Are these rights afforded to everyone, in which case the
digital divide issues in shorthand will surface.

Is there a risk of creating favorable health service access by
virtue of a PHR availability to some groups of people and less so to others,
which could be aggravated by issues of language, computer access, geography and
so on?

So, hopefully that gives you kind of a window into what we’ve
heard from the Federal programs we’ve talked to and what are emerging as some
of the challenges that are facing and that the government as a whole will face,
some of which spill over into private sector activities and some are really
more program specific.

But I think we’ll stop there and be eager for comments and
discussion.

DR. COHN: David and Cynthia, first of all, thank you for some
very interesting testimony and information. Let’s take questions. Jeff, you
first, then John Paul, and then I have a couple of questions and comments.
Jeff?

Questions, Answers and Comments

MR. BLAIR: David, I’m really impressed. I think that the work
that you’re doing in the report is going to have absolutely tremendous value
and I really was impressed and felt very comfortable with the way you’ve gone
about doing it, even the initial issues where you wound up listing privacy and
security as the top two issues and then you got down to the more technical
issues after that in terms of interoperability and other issues. So, profound
compliments.

Here’s the only areas where I think I could make some
suggestions.

One is that – and I’m going back to the ’90-’91 time
frame when the Institute of Medicine did the 18-month study defining the vision
of computer-based patient records – at that time, we found that there was
ambiguity, and one of the ways we reconciled that was to make a distinction
between the record and the system.

And a lot of times when I was hearing the role or
“requirements” of the Federal government, sometimes it was with
respect to the system and not the record.

And I think that if we could begin to make that distinction,
it’ll be helpful because there’s people who are concerned with the privacy of
the content of the record and it, I think, will help to clarify that in many
cases Federal guidance and support and service is to facilitate and enable
this.

In other cases, it would make it clear that the Federal
agencies might be asking for individual consent to sharing some of their
information for national health care purposes.

And that kind of gets to my other suggestion. When you gave
the presentation, it’s clear you have a heightened sensitivity to the fact that
for the public to trust and accept and adopt these, there’s got to be a high
level of trust. So it’s not that you don’t recognize that.

My thought, and I have to confess that when I was listening to
this, I kept trying to think in terms of the folks that are sensitive about
this issue, as I was listening to this, and before I came here, I had one of my
assistants who I use sometimes as a bellwether and I said, “Well, the
patient will have control of the health record.” And the first thing that
person said was, “Do you mean complete control?” Now, this is a
person who is not involved with health care intimately. But that kind of was a
little trigger to me, that they would zero on that so quickly.

Now, you’ve got that on your agenda. One of the things that I
think might help as you begin to characterize this, I think the phrase you had
was “Federal health requirements,” “Federal objectives,” or
something like that, “Federal health care objectives?” Is that
correct?

MR. LANSKY: One of the groupings of the policy objectives or
of the specifications for a PHR?

MR. BLAIR: Either way. What it was was a recognition that
while the principal goal of this may be for the patient to be able to use this
as a tool to improve their health care.

One of the other objectives that is clear from many of the
Federal agencies is they hope to be able to have access to this information,
which is for a good purpose.

But if we characterize it in terms of the Federal government
wants access, and I think that the privacy advocates would see that very
readily, I think we have to be very, very candid and maybe go beyond phrasing
it in terms of Federal requirements, Federal objectives, Federal desires or
needs.

The Federal government serves the population as a whole. So
actually patients and individuals are going to get a benefit from having some
limited, controlled Federal access to the data. And I think if it was put in
terms of the global or universal benefit as well as the individual benefit that
it could defuse a fear that the public at large may have about this.

For example, if we were to wind up indicating that not only is
this to help an individual with their ability to better manage chronic diseases
and their own wellness but it also would have, with their assent, with their
consent, the ability to feed in and be able to respond to national health care
emergencies or bio-terrorism or environmental issues and phrase it in that way
instead of just saying “federal objectives” – but do you see
what I’m saying?

MR. LANSKY: Absolutely.

MR. BLAIR: Okay? So that people don’t think it’s just the
government, which is “them,” instead of the ultimate goal still being
the population at large.

And my last observation on that is that personal health records
and personal health record systems offer the potential to have dramatic
improvements to our health care delivery system. But to do so, I think many of
us are envisioning they’re going to have additional information besides those
that we look at for an electronic health record.

Potentially, they would wind up having information about
environmental situations that the patient is in, and those things are the types
of things that help us with these environmental problems and community problems
and national health emergencies and contagious diseases — information like
where they work and geographically where they’re located, and what other
stressors, environmental stressors, they might be exposed to.

So, since that is of great value for these other things, it
also is going to be the type of things that folks are going to be even more
concerned about in terms of privacy.

So I think we have to focus on that very directly maybe in how
you characterize the report or just keep it in mind so people don’t feel as if
there’s a separate agenda here.

DR. COHN: Okay, Jeff, thank you.

MR. LANSKY: I think everything Jeff said is extremely valuable
to us and it’s important and some of the distinctions you raised at the
beginning, Jeff, on the record versus system, we’ve heard that, and I think I
am now seeing partly it’s a nomenclature problem but it’s raising a larger
policy problem, and I think we collectively need to do some thinking about.

Frankly, the phrase “personal health record” has
become a little bit of a problem because it does imply a document. And instead,
what we’re seeing is a series of functions which utilize a widely dispersed set
of personal health information and the system, in other words, is where the
action seems to be, and we’re not even clear that there will be a record
sitting anywhere in the traditional sense, and the implications of that, as you
suggest, are extremely important.

And I agree with your other comments as well. I appreciate it.

DR. COHN: Yes, thank you. John Paul?

MR. HOUSTON: Probably going to dovetail a lot of what Jeff has
already said, but I think you made a point that there really is no uniform
definition or understanding of a PHR. And really only one point in your
presentation did you really talk about or even mention a PHR. And I guess this
is the thing that I still have great problem with, is what is the
differentiation between the two?

And you mentioned interoperability and connectivity between the
two, and I’m struggling. I mean, it’s more of a common question I struggle with
is where does one begin, where does one end? I think different people have
different ideas; not just people but organizations have different needs as to
what a PHR and EHR are.

So I guess I’m just struggling with where is that intersection
or where is the overlap and how do we try to mediate that efficiently and
effectively, because I think when we listen to Jeff’s concerns and read through
this presentation, I think it still seems that’s sort of like one of the core
issues in my mind, and once you understand that, then you can start to sort of
answer the other questions he sort of raised and try to address some of the
issues that you’ve raised in the presentation.

MR. LANSKY: I think short of someone prescribing an answer to
that, this is like transition from gas to liquid. Then the metaphor we’d use in
the past, tethered and untethered.

One of the comments we heard from some of the interviews here
with the Federal folks was even if it’s an untethered PHR, ideally it would be
tetherable and that there should be design considerations so that this
connectivity you suggested is enabled, that a person doesn’t get stranded with
an untethered.

Having invested a lot of effort in money or whatever they do
into created a personal health record which then cuts them off from the health
care delivery systems information resources would be unfortunate.

So this is kind of a one specific example of a challenge to the
Federal activities, if there were to be agreement that that were true that
there would not be Federal support for fully untethered PHRs that could not be
tethered back to the system, assuming conformity to standards and so on. Right
now, as you say, there’s no clarity about that yet.

But the discussion has been surfaced in our interviews whether
or not to support the – when you have a situation like the VA or the
Kaiser example where you essentially have a consumer portal, which is very
tethered, and has at this point relatively little opportunity for consumers to
add information of the kind Jeff just talked about.

And at the other extreme, you have a completely independent,
untethered product which may have great value to a patient but doesn’t talk to
their doctor or their hospital at all. So I think there needs to be an answer
to your question, and I don’t know what it is.

MR. HOUSTON: It’s almost like there’s a third category of the
untethered; I’m going to call it the “sponsored health record.” It’s
not an EHR, it’s not a PHR; it sort of something that somebody sponsors for
which there’s additional access or rights or interoperability to or between.

And I think that maybe that’s the issue – there really is
another category or two of health records. I guess they all sort of together
sort of make a continuum of health records. And again, tethered, untethered,
and I think some of it has to do with public perception of rights and control.

DR. COHN: Yes, I think David’s agreeing with you. Mike, we’ll
bring you on the list here; you’re not up yet. We’ve got a long list.

My turn – which follows up along, John Paul, what you’re
sort of commenting on. And without trying to answer the question, I think one
would observe and I think both Jeff and John Paul have sort of said the same
thing, which is what you observed, that there’s tremendous ambiguity in this
whole concept.

I think where we talked about the personal health dimension,
this was a vague enough, high enough level concept that it included sort of
anything you wanted. But just as we moved from the NHII to the NHIM, you
suddenly move down a level of granularity.

And I would suggest that not that we need to rigorously define
what is and what isn’t, but more almost like there needs to be an agreed to
taxonomy of what these things are and how they all fit together.

And I don’t know that it’s just as simple as a continuum
between tethered and untethered, which is not a very satisfying set of
concepts. I somehow think that using consultants and whatever, we should have
something a little more sophisticated that.

MR. HOUSTON: I’m a very simple thinking person, so –

DR. COHN: Yes, but I think that there’s more to it. I think
rather than describing this as a world where we’re moving from pre-electric to
electricity, I think we’re really dealing almost the automobile market where
there’s probably a variety of different products out there and a variety of
different approaches.

The other piece I’m sort of struggling with is this issue of:
How does one evaluate direction? And it’s really that issue of metrics. And it
seems to me that there may be more agreement both in the Federal government and
in the private sector about metrics, about what you want to get out of all of
this at the end.

And I would observe that, for example, for provider health
records, electronic health records, I think we’re all aware that there’s many
ways to implement and many things that one could design, some of which are
provide quality, patient safety and cost effectiveness, some of which probably
just add more money and more cost and maybe even decrease quality in the health
care system.

And certainly, as one looks at all of these things, one needs
to sort of think about, I mean, are those the metrics we’re going to use for
personal health records? What is it that Federal programs might – indeed,
there’s a research agenda or some level of disagreement; how are we going to
converge as we go along, and what metrics might we use?

And once again, I’m just sort of thinking of you as writing a
report, things that I’d like to see in it. So that’s just my comments.

Steve, I think you’re next.

MR. STEINDEL: Thank you. David, it’s always hard to ask
questions or make comments after one of your talks because, as Jeff indicated,
and others I’m sure as well, it’s very interesting, complete and thoughtful.

I do have two sets of comments, and I think they’re more of
comments than questions. So the first I’m going to phrase as a question. And
you had CMS on there as one of the agencies that you spoke to, and I think one
of the things that you should address in the report is: What is the role of the
payer in a personal health records, whatever form it takes?

And this gets to some of the comments that people were making
concerning privacy, confidentiality of information. You know, how does a payer
go with this information? What are they using it for? What reasons are they
looking at it? And I think that should be explored in the report.

As Jeff indicated, it would give people a better sense of where
this is all going. And like I said, I phrased it in terms of a question because
I think you need more time to figure out an answer to it.

The second is in regard to the sets of discussions that John
Paul and Simon just had, and I wrote that down earlier, and as we spoke, I
changed my title, because the way I’ve been looking at PHRs over the last few
years is I said I’ve now come to the mind where there’s four types of PHRs, but
I’m changing that – I’m saying there’s four roles for PHRs, because I
think “type” is wrong because, as we’ve seen, it really is a
continuum.

And these things that we’ve been referring to as PHRs and with
nomenclature that’s been very vague and hard for us to get our hands on have
morphed roles, overlapped roles, tethered versus untethered versus tetherable
– that was an interesting phrase – shows how these morph and change
and how we need to discuss that.

And what I defined as my four roles, and the first one I talked
to roughly is the amazon.com model, and this is where you order something over
your PHR, and we’re going to hear about some of that today, you know, where
people use this as a portal to refill prescriptions and schedule appointments
et cetera, and you can get, in some of these cases, an inventory of what you’ve
done through this portal.

And the second is a view, and with limited comment type
approach, you know, which we’ve referred to as the tethered PHR, I think, in
some cases.

And the other is what I’ve just referred to, for lack of a
better term, is the full bore PHR, you know, which has everything. It’s your
health record forever and allows tethering and untethering and is what the
President generally envisions when he talks about the personal health record
and carrying it from place to place.

And then the fourth tool, or role, of a PHR which was emerging
very clearly in your discussions is as a dissemination tool.

And you did a very nice job of describing what people have
talked about in terms of standards and privacy, confidentiality and security
concerns in these various roles. But in the last couple of months, I’ve come
across – in part, this is with my work with the HL7, the HR committee
– but I’ve come across two additional aspects that I think we need to
start talking about.

And the first is the accuracy of the data that’s contained in
the personal health record. And people are questioning. We heard very early in
NCVHS hearings from physicians who said they would accept a paper record from
somebody but they would not accept it electronically because of its accuracy.

And this has actually continued. We’ve heard questions about
accuracy of information and how do you judge that. And I think that’s something
we have to start discussing because if we’re going to exchange this
information, we have to have some definitions on accuracy.

And the second has to do with the timeliness and time
sensitivity of the information. If we’re talking about a long-term PHR or even
a tethered PHR, is that information still current? Is it timely?

And I think we need to start discussions in that area, because
unless we fulfill those two areas, people who are looking at a PHR at a point
that’s not today may not be able to understand the data that’s in it.

So those are just really two comments; you can react if you’d
like, but Simon, thank you.

DR. COHN: Do you have any comment.

MR. LANSKY: It’s good – thank you.

DR. COHN: Okay. I’ll just let everybody know what the order is
– it’s Gene and then Mary Jo and Mike; it’s Maurice, Linda and then I
think John Lumpkin has a question even though he hasn’t spoken up on the phone.
Is that okay? Have I missed anyone? Okay. Gene.

MR. STEUERLE: Let me add my compliments to those of others
here. I think what you’re doing has really been very, very helpful in
coordination in the work among the agencies. It’s actually crucial about what
happens here.

I have one minor comment which is just going to reinforce
something Jeff said, and then I want to get to a little more of a major issue.

The minor one is I would, if I were you – and maybe it’s a
comment to us in general, not just you – if I talk about something like
the Federal role, I really would talk about really the public interest in this
issue and how the Federal government can enhance it, rather than thinking about
it as something inherent in the government itself. The government is basically
an intermediary, presumably serving the public. That’s fairly minor.

My major issue has to do with the question whether within the
agencies themselves there is someone ultimately bears responsibility for making
action happen. And I say this probably because I worked in government for 15
year; maybe it’s my experience of working with IRS for many years.

But, you know, bureaucracies, I think, are notorious for
committeeizing everything, and we are a committee here, because it in some ways
gives nobody full responsibility for something happening.

We’ve attempted, the Secretary’s attempted, to get around this
a little bit with the appointment of David Brailer, but even he has really
essentially no authority other than just if I can help for the most part other
than to beg in most cases – there’s some authority, but not a lot.

And so the question for me is whether within the agency there
is some place at which the responsibility resides, not just responsibility for
what you list under 1 – under your category 1 you have these issues of
attention – but responsibility for the cost of inaction.

The problem that I’ve seen over the last couple years in
examining this issue is this is an area where in part we’re going to learn by
doing, and by doing, we’re going to make mistakes.

And so for bureaucracy, there is always the fear of making that
mistake and getting labeled as a mistake, and so it’s easy in a bureaucracy to
defer and delay and put off to other people a decision.

And what you don’t have in here, I think because it’s presumed,
is what the cost of inaction is. You know: What is the cost to me just of not
having a personal health record, whatever form, where I could at least find out
whether I’m getting duplicate shots, whatever very minor risk that may have, or
whatever the cost to me is of not being able to check up on whether the doctor
is checking my white blood cell count or whatever else, whatever problem I
have?

It seems to me there are costs of inaction as well, and it’s
not clear from here, A, how that relates to the cost of things like if we
violate privacy or something else, and then, B, who within each of these
agencies has responsibility ultimately for making the decision not just to
move, which could bear the cost of making the mistake, but the responsibility
if there is not action, there’s not movement, and whether inherent in the
structure is someone actually in VA or any of these other agencies. It’d just
be very interesting to know whether someone really bears – where that
responsibility lies.

I don’t fully know how to get at it; easier said than done. But
I would love to at least have some comment within your report on how that
responsibility plays out. Or in some other report, maybe.

MR. LANSKY: Well, I think it’s something we should add to the
report. We haven’t formally discussed it, and I’m cataloguing in my own mind
what I think the answer is to that question, and it’s very diverse.

In fact, one of the interviews we did conduct, someone said so
far this field is about personal leadership, not about structural authority.

And so in agencies where there’s a person who has a strong
feeling about how to make this happen, something might be happening, so that in
the early phases, that ad hoc mechanism might be understandable but it might
not address the other issues you raised.

DR. COHN: Thank you. Mary Jo?

MS. DEERING: Well, I’m going to be different and congratulate
Cynthia, because I think we are deeply indebted to her for her vision in
putting together this project and to see exactly what needed to be done, and I
want to thank Penny for supporting it and put in a plug for old home, because
ODPHP has been absolutely steadfast in its commitment to personal applications
for health management and health improvement and this is just the latest in a
series of really terrific contributions to I think the Federal government
broadly and to the field.

Had a couple of quick comments and then a couple of requests to
you both for the report in general and for the NCVHS workgroups.

In envisioning this tethered versus untethered, I want to just
remind us all of the rising tide of what is called euphemistically
“consumer-driven health care,” which is just the cost shifting on to
the consumer, and as one who in the recent open season jumped ship into one of
these high-risk, high-deductible, consumer-driven health plans to try and test
drive it for myself, and it doesn’t have a PHR that goes along with it to help
me manage it, I’m ticked!

[Laughter.]

MS. DEERING: A nice word to use.

And so you are going to have a rising audience of people who
need something to actually manage this and who will need the functionality of
information exchange and information management regardless of which
Administration is in power.

Second, I wanted to mention that NCI is looking at a couple of
areas where we would hope to get some interest in collaboration from others and
they’re both around the area of standards.

We are very interested in standardizing the patient interface
both for data entry – not only data standards around patient-entered data
but issues about accuracy that have been raised. We’re actually doing some
tests to judge the accuracy of patient-entered data by comparing it to some
records.

But also we’re interested in an areas that I know that Cynthia
has always been interested in, which is not the data standards but the
presentation standards.

And I know, David, that you were a strong voice in saying if
the Federal government did nothing else but help lead us toward some kind of
accepted approach to the interface and to understanding how real people, real
patients, would really want to interact with it, that that would be a
contribution. And NCI does want to support some research in that area.

I wanted to point out that the HL7 personal health record
working group is finally going to get underway this month, and so there will be
work begun to evolve in that field.

My requests to you are, first, with regard to this issue of
privacy and public interest, Mark Rothstein, who chairs the Subcommittee on
Privacy and Confidentiality, is holding some hearings to look exactly at these
issues of privacy under the NHIN and with patient “control” of their
record.

And so to the extent that you are – I don’t see Kathleen
Fyffe here who does triple duty and she staffs him on that – but to the
extent that even in the next few days you could tease out some of the types of
questions around patient control that you see emerging and feed them back to
us, we’d be happy to share them with her because I know that they’re soliciting
questions as we talk for those hearings.

And then the last thing is a request for something that you
might want to pay attention in your report and it does have to do with how much
should the government be dictating this, that or the other. And it does seem to
me as – you know, again, ODPHP was the very first to come out with a
government Federal consumer health portal.

And now there’s lots of them all over the place and they almost
represent the same problem that they were created to solve. And I think that
the same could happen with PHRs.

And so you could probably help by saying: Are there a few key
strategic areas where, if nothing else, unified action is absolutely essential?
Data standards – you know: What should the patient data entry be? I mean,
I’m just hypothesizing. What should be the requirements for patient control?

If you could categorize even with whatever guard or specific
nature you could indicate where you think at a minimum, if the government did
nothing more, it not only should but absolutely must do that consistently.

And I guess I’m thinking more in terms of its own activities,
like CMS doing a PHR, because I can actually, quite surprisingly, foresee the
time when Federal agencies are going to be saying, hey, this is such a great
thing; we want one, we want to offer it to our audiences, just like we now have
a website.

And so I think if you could tell us what at a minimum we need
to do, absolutely unified, would be helpful.

DR. COHN: Thank you. Mike Fitzmaurice?

DR. FITZMAURICE: David, I liked your model, the way you
approached it. As you were going through it, I found myself thinking this could
apply to all of HIT, this could apply to other areas than health information
technology – the way you look for issues, the way you look among
constituents, and the way you look for the role of the government. So I applaud
the framework.

And I have just a couple of suggestions, or maybe comments.

One of them you talked about in one of the slides, providing
integrating tools and functions. It would help us to know what are examples of
these things that the private sector is not picking up that the government has
as its duty or role to supply. A couple of examples would help there.

Secondly, what I find missing from the role of the government
is the notion of research, evaluation, providing information for personal
health record investors about the business case and the consumer case for
adopting PHRs.

And then thirdly, I guess Cynthia covered this one; she said,
well, this is not a do-everything study. I find myself wanting to know where is
PHR activity taking place – VA, CMS, DOD? Where is the PHR used? Where is
it being supported? Where is research and evaluation on PHR being done?

And then you’ll probably make recommendations at the end of
something like: Where should leadership reside in this area?

I’d like to see off site a list of criteria by which you go
about making that recommendation, of being explicit about them – here’s
where it already is, so we think it ought to be expanded; here’s where
expertise is and we think you ought to get resources. How do you decide where
leadership should reside?

Maybe, here’s the top level, and it ought to be at the top
level because coordination is necessary. Those are some examples.

Part of high-level leadership, and maybe one of the most
important parts, is determining the amount of investment the Federal government
is willing to make, it’s investment of money, it’s investment of time and
people. Managers hate to send their staff to some meetings, to committees, to
things where they don’t see that it’s going to please their boss, and the
ultimate boss, of course, is the President and Congress and the people.

Jeff mentioned about the public being concerned about the
Federal government glomming up patient care data, making a database of it,
perhaps.

I see this PHR arena not as requiring more patient information
in the hands of the government; the government already has information that
might populate PHRs in part, with diagnoses, procedures, and over time, where
has it been paid for over time? And many private health plans have that as well
as DOD, VA and CMS.

I think most of us can support the patient getting access to
this data to improve their health care, their health habits and treatment
compliance. And so the government might be a pusher of data or at least a place
where, when the patient is authenticated, can grab that data.

I see VA doing that in myhealthevet; I see CMS trying to do
that by putting information on a website; I see Social Security doing that by
getting access on the website. I see all that feeding into what I want in my
home for my own personal use.

MR. LANSKY: Good. Thank you.

DR. COHN: Linda?

MS. FISCHETTI: Cynthia and David, thank you very much. I very
much look forward to your report when it’s completed and I think it will have
great utilitarian value for us.

I do want to mention that if you are taking on the taxonomy
issue, Jeff so eloquently sent us back to the historical benchmark from 1991 of
IOM, that has been used repeatedly internationally and expanded upon, and ISO
technical committee for health informatics 215 is publishing a scope and
definition for electronic health record and electronic health record systems.

And it has a great deal of definitions that we here
domestically are not yet using and it also has helped set the explicit
expectation internationally of the differentiation of the various types of EHR
and EHR systems.

So I would suggest that you look at that.

MR. LANSKY: Thank you.

DR. COHN: Great. Now, I think we’re sort of finishing off the
session. Now, John, I know that you’re on the phone and I think you’re raising
your hand but we just can’t see it very well. So I’m wondering if you have any
comments or questions?

DR. LUMPKIN: No, actually no comments and questions, although I
did try to raise a point earlier. There are a few of you who may be a little
bit more distant from the microphone and it’s a little bit hard to hear.

DR. COHN: Okay. Well, John, actually thank you for reminding
us, and I guess I would once again remind everyone for the sake of those
listening in on the Internet, and I think we only have to ourselves spend one
session on the Internet to realize that you do need to get close to the
microphone and speak and hopefully slowly so that those listening in can
actually here. John, thank you for the reminder on that.

Now, we are running about 15 minutes late. We will take our
break. Obviously, I want to thank our presenters for some very interesting
testimony and information. We’ll start again at about 10:45.

MS. DEERING: Could we check to see if our participants are on?

DR. COHN: Yes, I guess we should check. We have two –

MS. DEERING: George Brown.

DR. COHN: — George Brown and Thomas Foley calling in. Are they
on the line at this point?

Okay. Well, I’ll ask during our break if we can just check and
let them know that we’re running just a couple of minutes late.

So anyway, we will take a 15-minute break. Thank you.

[Break begins at 10:30 a.m. Meeting resumes at 10:50 a.m.]

DR. COHN: Okay, we’re going to get started momentarily if I
could ask everyone to please be seated. And we obviously want to thank our
presenters, George Brown and Thomas Foley, for waiting so patiently on the
phone. Really, our apologies that we’re running late.

MR. FOLEY (on phone): Not a problem.

MR. BROWN (on phone): Apology accepted. [Laughs.]

DR. COHN: Okay, thank you.

Okay, this is our next session. As those on the Internet
realize, this is a meeting of the National Health Information Infrastructure
Workgroup of the National Committee on Vital and Health Statistics. I’m Simon
Cohn, the Chair.

We’re obviously very thankful to have both George Brown and
Thomas Foley on the phone to present some testimony and discussion I think of
their use of personal health records, so we really want to thank you for
joining us. I think we also have in attendance I believe it’s Robert Blais
–

MR. BLAIS: Yes.

DR. COHN: — okay, as our third presenter this morning, so we
want to thank all three of you for taking time to join us and sort of share
some of your experiences with us.

Now, both George and Thomas, I do want to remind you that you
are on the Internet and being broadcast, so just – this is not meant to in
any way stifle conversation, but just to once again reinforce that this is
being broadcast publicly and this will obviously be a public record.

With that, George, do you want to start out, or Mary Jo, did
you want to give any introductions to all of this?

AGENDA ITEM: Panel 1 — Consumer Perspectives and
Experiences with PHR — Introduction – MARY JO DEERING

MS. DEERING: I was going to thank them both for joining us and
let all of our participants know that Mr. Brown and Mr. Foley were identified
by CapMed on one hand and by Geisinger on the other and we’re very grateful to
them for being willing as members of the general public to share their
experience.

And I would perhaps just invite each of them to offer a word
or two at the beginning of their remarks about how they came to use the
particular system that they’re using. And again, thank you both, gentlemen.

MR. FOLEY: Would you repeat that last sentence, please?

MS. DEERING: Well, I was encouraging you, if you wished, to
open your remarks with a couple of sentences about how you first to use the
system that you’re using.

MR. FOLEY: Gotcha. Okay.

MR. BROWN: You want me to start, Mary Jo?

DR. COHN: Yes, and I just wanted to explain to you how this
works since I’m sure you’re not familiar with this group.

What we’ll do is let each of you comment, and then at the end,
what we’ll do is to ask questions and have general conversation, assuming
that’s acceptable to everyone.

MR. BROWN: Okay, you want me to start, please?

MS. DEERING: Yes.

DR. COHN: Yes – George, thank you.

MR. BROWN: Yes.

AGENDA ITEM – Presentation (by phone) — GEORGE
BROWN

MR. BROWN: I have participated in CapMed since 1999 at which
time I was seeking something that would combine my medical records and my
wife’s. We both have somewhat of medical problems, and it was getting monstrous
to deal with. So, being more or less a novice on a computer, I searched the
Internet till I found one that I thought might fit my needs.

Fortunately, at that time – they no longer have this, but
at that time they had a 30-day trial. So I downloaded the program and tried it
for 30 days to get familiar with it.

After getting into it, I could see that it was what I was
searching for, so I set up a regular program with them, and it’s been with a
lot of medical help. I mean, you can tell that the program has been put
together with somebody, some type of providers or medical personnel that knows
a little bit of what they’re talking about.

For example, if you wanted to record a new type of medical
detail such as a treatment or a condition, they have a box that you click on,
and then when you click for a new program to come up, it’ll list various common
conditions or tests and you can automatically put that into your file. You can
date the file when you had this particular test or condition, which gives you
an excellent way to review the history of it.

And then also, as insurance goes in this day and age, you know
that most of the tests that you take annually have to come up on a year basis
and you don’t dare avoid that policy, so by being able to click back on, say,
when my wife had the last mammogram, I know pretty much when to start trying to
get her appointment for the next mammogram and not violate the insurance
regulations on it.

One of the big things that I think CapMed has and maybe other
type of programs have this is what they call their “emergency key.”
This is what’s called a jump drive. It’s about 128 mgs.

And now they have one that has the complete program of CapMed
of what they call PHR, personal health record, built right into the key. That
way you can take it from computer to computer and you could also take it into
your doctor’s office and plug it into any USB port and you can put through what
they call the “emergency card” in there, plus any reports that you
want the doctor to review.

Now, this course would be under the conditions that the doctor
you’re seeing had a computer right in the examining room. Some of them do, some
of them don’t.

A lot of times when I’m going to go to a doctor – say, I’m
going to go to a doctor for my high blood pressure, I download a graph that
shows the readings I’ve taken myself over the past 30 or 60 days, whatever the
time factor may be. Also, I put in there my weight gain or loss – usually
not loss, but hopeful now and then – and my pulse reading and so forth and
so on.

I can also bring up a medical history that is pertinent as to
– I’m a polio survivor. I got polio in 951 when I was serving in the
United States Navy. I was planning on being a career man, but that was cut
short. So I have some problems with that. My wife has some medical problems,
like I said.

We’re taking a lot of medications. You can review these things,
know when the due dates are for them.

I don’t know what else I can tell you. I mean –

The doctors and nurses seem to be very impressed when I bring
these reports in. They want to make copies of them. I usually tell them just to
take the copy and put it in my file because I can make another copy back
through this computer back here.

I think it’s an excellent program, but there’s probably others
out there just as well.

That pretty well cover it?

DR. COHN: George, thank you very much. I think our next
testifier is Thomas Foley, and you’re on the line?

MR. FOLEY: Okay.

DR. COHN: Okay.

AGENDA ITEM – Presentation (by phone) — THOMAS
FOLEY

MR. FOLEY: I guess I’m in a very, very different situation
than George is in that I’m with Geisinger health maintenance organization, and
they initiated to me by suggesting that they had this system called My Chart;
would I be interested in trying it out? And that was about, oh, four or five
years ago. And they gave me some codes or stuff to get in.

And since then, I have accessed it fairly regularly. I have my
own password and ID.

What I find very useful is that it keeps me in touch with
Geisinger, Geisinger health maintenance organization.

For example, appointments by them or requested by me are
communicated through the system. They have a database. The only thing I can
think of – I’m not computer

literate, futz around with it – but they have a database
that I can go in and say, okay, you did all these tests on me; now what does
this mean? And I could highlight that. And it’ll come back and give me a whole
summary of what a particular test looks for, what the parameters are, in a
language that I can understand.

All my lab tests, recent lab tests, are there. I can take a
series of lab tests – let’s say – oh, I’d have to pull it up to look
at it, but let’s say I was looking at high blood pressure. I could bar graph
that to see whether it went up or down, stayed the same throughout whatever
period of time happens to be on. They have a system.

Now, some of the things that originated, I originated. I had a
heart cath done with a Dr. Blankenship about I’m going to say three –
that’s no longer in there. I would like to have had that stay and be able to go
back and look at those records because initially I started printing them out
and then I said to myself, this is kind of dumb; it’s in the system. So I
stopped downloading anything and depended on the system to provide me with it.

I find that I can go in almost anytime and access any
information, medical, whether it is pertinent to me or maybe something that has
come in discussions with other folks, I get this medical directory and look it
up.

What else can I tell you? That’s a question I’m asking you.

MS. DEERING: This is Mary Jo. Thank you very much.

It occurred to me that maybe I would invite each of you to
address – there’s two separate areas, and you can do them both together or
we can cover one first and then the other.

The first has to do with — and it may only be for Mr. George
Brown because you are entering your own information – there’s sometimes
some concern, I’m going to be very honest, about the accuracy of
patient-entered data and that doctors are suspicious of it.

I’m wondering: Are you finding anything like that as you use
your record, as you put information in? And as doctors look at your
information, do any of them question you about this?

MR. BROWN: They haven’t, up to this time.

MS. DEERING: And I guess the other side of it is: Is it hard
for you to put the information in?

MR. BROWN: I can also put in attachments. I could scan in to a
program. Say, my last blood work-up, and add that attachment to the system. I
can also go on the Internet, like Tom was talking about, and get medical
information as needed.

But no, Mary Jo, none of them has questioned my accuracy of
stuff. I suppose if it was way out of base to what they’ve been seeing, they
might, but, no, I haven’t had that to come up.

MS. DEERING: Thank you.

MR. FOLEY: I’m in a very different system, listening to George.
He’s providing the information and I am receiving the information from
Geisinger and it’s my chart system.

There is something I would like to see in there that isn’t, and
that is when I’m in the doctor’s office and we’re going through all the
information, he or she is typing into a computer and I can only assume what
they are putting in there has to do with my visit and their assumption is to
what it is all about.

I would like to see that in my chart so that I could go in
there and access that and have it say something like “Patient,” or
whatever they call me, “No change; everything is fine.” Or,
“Collect his money before he leaves because he’s checking out and doesn’t
know it.”

[Laughter.]

MR. FOLEY: That would be helpful.

MR. BROWN: That was good, Tom.

MS. DEERING: Well, let’s just stick with that just a minute.
Are there other things perhaps, Mr. Brown, that you would like to see in your
system that aren’t there or things that either of you don’t like about your
systems?

MR. BROWN: Well, one thing I was going to point out. I think
one of the reasons I’ve had the success with this CapMed program is the fact
that they have a lady name of Beth Hunter who does the support. And as I
mentioned to Tom, I have a condo in Indiana with a computer up there.

Well, needless to say, I want to transfer that information back
and forth. And before they brought out this key, I would have trouble of
transferring updated data from one computer to the other computer. Now with
this key, it’s all simple; I just plug in, that’s all there is to it.

But one of the questions that you asked for me to answer in the
future is: How can this be implemented to the masses? Well, one thing they need
is a simple program and something that has good personal support, if that
answers your question.

MS. DEERING: Thank you.

DR. COHN: Why don’t we proceed on and ask Robert Blais to talk
with us, please.

MR. BLAIS: I’m going to let Jimmy talk first.

DR. COHN: Oh – well, I think he’s included; we were going
to have questions afterwards. That was why I was asking Mary Jo whether we were
continuing the questions. Maybe I’d better ask all three of them questions.

AGENDA ITEM: Presentation – JAMES MAGIERA

MR. MAGEIRA: Would you mind if I also spoke? I’m a veteran
also, and I’d like to – with Bob?

I’d just like to tell you why I find myhealthevet so important
is because I’m a Vietnam veteran, and I can remember back when I was standing
on an aircraft carrier, and the next thing I knew, I was in the Portsmouth
Naval Hospital. I woke up in an intensive care unit –

DR. COHN: Is it they can’t hear or –

MS. DEERING: Do you his name for the record? Would you give me
your name?

MR. MAGIERA: Oh, James Magiera.

DR. COHN: Okay – I’m sorry.

MR. MAGIERA: — and I found myself in the Portsmouth Naval
Hospital in an intensive care unit.

And when I awoke, there was a person standing next to me saying
that everything was going to be all right and you had a sever concussion and I
ended up spending nearly three months there, rehabilitation and taking a lot of
tests and so on.

And the three months that I was there, I didn’t learn much more
than what I learned the first day – that I had a concussion, I was going
to be all right. What I was hearing when I asked the doctors was a lot of
languages I didn’t understand. A lot of it was abbreviated. I didn’t know what
an EEG was or all these different terms. I had just turned 20 years old.

So what I did, like most of the veterans did there, as soon as
you got out of the doctor’s appointment, you’d run to the men’s room. And you’d
go in there and you’d carefully pull out the notes so that you wouldn’t put
them back wrong, and try to read what was written, because you always carried
your folder with you.

So we were all in there, trying to find out what the problems
we all have.

And of course I’d get out there and you’d be even more scared
than when you went in. There’s one saying this is going to happen to you, and
the other says, oh, no, this is going to happen. So we were totally confused.

And with my myhealthevet, what I’ve found now is I can go in to
my myhealthevet and I can look up these abbreviations and I know what an EKG
is, I know what a spinal tap – I didn’t know what it was, and I was
getting one.

I was really, really scared in the hospital not knowing what
was going to happen to me. But with myhealthevet, it’s allowed me now to be
able to go in and look up all these different terms. I mean, there’s 11 million
pages in the library alone. So I’m going to find it.

And if I need help, there are people are going to help me find
the information that I need.

Myhealthevet also now is allowing veterans to be able to go and
self-enter information. That’s really good because you’re going to be able to
put information in from your private doctor, which I do have. I have a private
doctor, and I didn’t find out much more from my private doctor than I did from
my military doctors.

It was still the same thing – it was terminology. I didn’t
know, I didn’t understand. I would ask; they would give me the answer, but I
felt so stupid saying, “I don’t know what you’re talking about.”

But now I can take that information and I can come back and I
can come back and I can look it up, so the next time I go to my appointment, I
know a little bit more what I’m talking about.

And myhealthevet that I see at this point is such a great asset
to all our veterans, even in Afghanistan and Iraq. I mean, if you have access
to a computer, you can go to myhealthevet. You can record things that are
happening to you there.

My father-in-law served two terms in Vietnam and he was being
sprayed by Agent Orange. The only reason that he even got something at the end
– he died at 50 years old – he was sending letters home saying that
he was in the field, where he was in the field, and they were coming him,
spraying these liquids over him.

He ended up coming up and had cancer which went all the way up
through his spine and through his whole nervous system and he died 30 days
later.

Maybe, you know, a veteran who can record these things that are
happening now on a computer can bring this up once they’re out of the service
and say, you know, this is why I’m having problems with my skin; maybe he can
look up Agent Orange is, or whatever the things that are out there, these
chemicals that are on these bombs.

Who knows what’s out there in that desert these veterans are
holding, or breathing. But they can record that and then come back later and
bring this up to their private doctor or a military doctor or to the VA.

It’s a fantastic tool. And I don’t know what took so long to
get it here because I know veterans are looking for information. They want to
be able to find out what’s wrong with them and understand what’s wrong with
them. Just like private people do, they want to know. But they don’t know how
to ask. The veterans that I see every single day are veterans who are older
veterans now that don’t know how to use computers very well but there’s classes
that are coming up to teach them.

I have a veteran who told me, I wish myhealthevet Phase 2 was
in about three months ago because he woke up in the middle of the night and he
has his own computer in his room, and he said I was getting these sweats and
hives and so on and by the next morning, it was gone. He said, if I at the time
had my computer and I had a place to store it, I could have stored that in
there because my appointment didn’t come along until about a month later.

And so now he has a record of it and he says, oh, by the way
– that’s right; I do have something that happened to me one month ago.
Whether it was important or not; maybe it was something he ate, maybe it was a
little stroke, I don’t know. But he could bring this up to his doctor.

What I’m going to do is once Phase 3 comes into effect is I’m
going to take my medical records, and I want all my medical records, because
when I go see my private doctor, I don’t want 10 percent, I don’t want 20
percent, I don’t want 90 percent, I don’t want 99 – I want 100 percent,
because I want my private doctor to know exactly what’s happened to me over
these years and what’s being done to me.

Also, the other way, I’m going to take everything that private
doctor gives to me and I’m bringing it to my VA doctor and I’m going to let him
see what’s going on. I want the two of you to get together, find out what’s
happening to me is the right thing. That’s all veterans want. They want to be
cured. They want as much help as possible.

We fought for our country, we bled for our country; we want our
country to respect us and to let them know that we care about ourself and we
want this information.

And the one thing I can tell you about my myhealthevet up to
this point is that it’s absolutely straight from the heart. The people that are
working on this program are fabulous people. They’ve done a lot of work,
really, really hard work, and I can’t thank them enough.

And I have a little bag over there – I wish I had brought
it over here – but I’ve got 18,000 names in it that I could roll out here
right now, signatures. It would go two times the length of a basketball court.
I’ve left another 20,000 back that I couldn’t take; I’d have to pay for another
seat on the plane. They are all thanking you for all that you do. We want more.

We want more because we deserve more as veterans. We fought
hard so that you people can try to do the best to help us and we understand
that, but we want all our records, and that’s a big issue. We want them all.

So I want to thank you for allowing me to come here and tell
you a little bit about how I feel and veterans that I have spoken to feel about
myhealthevet and personal health records and what it means to me, and to us.

Thank you.

MR. FOLEY: Mary Jo?

MS. DEERING: Yes?

MR. FOLEY: Tom Foley, here.

MS. DEERING: Yes.

MR. FOLEY: I made the assumption that my Geisinger, the
information that’s in the system itself, is available or provided or is in the
record.

MS. DEERING: I’m sorry – was that a question or –

MR. FOLEY: It was a question. And I’m looking at my chart here
which is health summary, medications, test results, health reminders, recent
visits, immunizations, allergies, current health, you know, all of those kinds
of things that are available to me.

MS. DEERING: Yes –

MR. FOLEY: That is part that is in the record already?

MS. DEERING: Yes. I mean, in some records, that is in. In other
records, you have to create it yourself.

And are you asking whether myhealthevet includes all that?

MR. FOLEY: I guess. They are things that I did not mention on
the assumption that it was part of the presentation there in Washington.

MS. DEERING: I’m not sure – you’re free to mention
whatever you’d like. But perhaps what I would do is we have one more person who
is going to testify, Mr. Robert Blais from the VA. Could I ask you to hold that
thought –

MR. FOLEY: Sure.

MS. DEERING: — and perhaps we’ll let Mr. Blais share his
views, and then we can open it up again.

MR. FOLEY: Okay.

MS. DEERING: Thank you.

AGENDA ITEM – Presentation — ROBERT
BLAIS

MR. BLAIS: Yes, my name is Robert Blais. I use myhealthevet to
record pretty much everything I do now. And you can check up all your medicines
and see if you’re taking eight medicines and you can check them to find out any
reactions they have to each other and you can actually print it out after and
bring it to your doctor.

And, oh, there’s all kinds of really good tools in there for
questions that you just don’t know about yourself. It’s just amazing how much
information; it’s hard to really comprehend all that they actually have,
looking into the Web page.

I’m trying to think of what else I can do with that. There’s an
animation, animated part of it, so you can look any kind of parts of your body,
the names of the parts of the body, the muscles and the nervous system. Pretty
much what I do with it. And still it’s never-ending learning because it’s so
huge.

MS. DEERING: Thank you.

DR. COHN: Okay. Does the panel have questions? I think, John
Paul, I saw your hand up earlier. Do you want to start and then – oh
–

MS. DEERING: Do you want me to read –

DR. COHN: Okay. I guess Mary Jo goes and then John Paul and
then Jeff.

AGENDA ITEM: Presentation (by email) – BONNIE
THOWSON

MS. DEERING: I’m actually now speaking on behalf of someone who
couldn’t be here when we trying to identify people who were using some
different form of personal record.

I was also referred by David Lansky to a woman named Bonnie
Thowson, who couldn’t be here but who sent me a short email to explain how she
had used a personal health record. So I’ll read it verbatim; it’s just a half a
page. It says:

“Mary Jo, I am so sorry I missed you this weekend. I would
happy to share my experience with you.

Since I have been and will be out of touch by phone, I thought
I would share my experience of my Shared Care Plan with you in writing via
email.

“I have two granddaughters who are 11 years old, and this
summer we went on a cruise to Alaska, cruising being my favorite way to explore
the world. Of course, the girls know of my diabetes and we had talked about the
Shared Care Plan, where it was, and how it could be used.

“One of them had been with me once when I had a blood
sugar drop suddenly, and so she knew from previous experience what to do in
case I couldn’t tell her.”

“We were getting ready for breakfast one morning and I
suddenly became aware that my hands were shaking and I began to feel ill, then
dizzy, and couldn’t focus. I told the girls I wasn’t feeling well and to get
help. That was the end of me.

“One granddaughter took the paper copy of the Shared Care
Plan with her to the medical office on the ship while the other stayed with me.
The medical team arrived a few minutes later and supplied the medical treatment
I required. Everything worked out great.

“I know that the Shared Care Plan saved my life. All the
information the medical team needed was on the plan – medical conditions,
meds and dosages and allergies – all within their immediate reach.

“I am sure the outcome of that outing would have been
different had I not had the Shared Care Plan with me. Needless to say, I’m also
very proud of my granddaughters, who kept their heads in an emergency.

“Bonnie Thowson.”

MR. BLAIS: Shows the importance of it!

Questions, Answers and Comments

DR. COHN: Okay, John Paul, do you have some questions?

MR. HOUSTON: Yes, I do. Not being a doctor, one of the things I
always worry about myself, and I know when we talk about PHRs and other things,
and I think it’s specifically true where PHRs contain information from the
medical record, and I guess I’m concerned about whether the patient understands
the nature of the information that he or she is looking at.

And I know I guess Mr. Foley said that in the Geisinger My
Chart portal he has the ability to look at his medical records information, and
I guess the same holds true for myhealthevet.

I mean, my question is, is it something that you actively look
at, your information, or you just like the fact that it’s available for your
other care givers and do you find yourself trying to understand it more or
finding that you don’t understand it as well as you might think then when you
go talk to your physicians? I’m trying to understand perspective.

MR. MAGIERA: Oh, definitely, definitely. I interpret it one way
and the doctor will interpret it a different way, and that’s why you have to
get together. That’s why we need to get together, so that we both understand
what we’re talking about. Absolutely, absolutely. I’m not a doctor; I’m a
horticulturist – I grow flowers, I work with plants. I don’t know nothing
about that.

MR. HOUSTON: Do you find yourself sort of spending a lot of
time researching, trying to understand what it is –

MR. MAGIERA: Yes, I do. I do go in, and I’ll go in the computer
a lot. And the other thing that’s great about myhealthevet is the information
you’re getting on myhealthevet has been looked at, someone has checked it out,
so it’s going to be pretty accurate.

The stuff that’s out there on the Internet, I don’t know if
it’s true, I don’t know – I could be writing that. Anybody could be
writing something, you know? I don’t know.

But I know in myhealthevet I can trust it.

MR. HOUSTON: Do you fear that other veterans may misinterpret
or look at their information in myhealthevet and may not make the right
decisions or misunderstand what it really means?

MS. FISCHETTI: Basically, would it be scary to see the
information and not have the context? Is that –

MR. HOUSTON: Right, exactly, or misunderstand the context and
misinterpret the information?

MR. MAGIERA: Myhealthevet isn’t in the third phase yet which is
going to allow us to go into read our medical records, so it’s not there yet.
But I think I can answer that a little bit.

It’s true – I might be a little scared to see what it
actually really means. But I’ve been in war; I’m not that scared to see
information. I had bullets shot at me, I got hit in the head with a wheel, you
know? Yes, it’s a little unnerving to know that maybe something you have,
you’re going to die from it in five, 10 years. My condition, I may be blind in
another six years, not totally blind, but legally blind, because of what
happened to me.

Sure, that’s frightening, that’s scary. I don’t know what I’m
going to do, but I know after talking to doctors and going on different places
on the Internet and reading about it, I feel a little bit better. I don’t know
how true all that is, but I know when I go into myhealthevet and I read it, I
feel a little more comfortable because I know it’s been looked at and, you
know, I live with it – you have to.

MR. HOUSTON: Mr. Foley, just briefly, do you find the
information –

MR. BROWN: I’ve got a question that I’d like to ask somebody.

MR. HOUSTON: But I’ll ask Mr. Foley the question first. Do you
find the information is understandable in the Geisinger my health, my chart
system.

MR. FOLEY: Yes, I do. I find it very useful. While we were
talking here, I just pulled up my triglycerides.

MR. BROWN: That’s something called cholesterol.

MR. FOLEY: I’ve had a family history of health problems. I had
my heart attack at age 39 and so I do tend to try to take care of myself. And
my cholesterol has been in the 238 range for years and years and years, and
Geisinger has put me on a cholesterol reducing drug and I’m now down around
170.

So I think being able to look at those kinds of things gives me
some encouragement – like, hey – you know; I’m pushing 70 right now
and I’m doing pretty good.

DR. COHN: George, are you there?

MR. BROWN: Yes.

DR. COHN: I guess we should ask the same question of you as
well as it sounded like you had a question also.

MR. BROWN: Yes, I’ve got a question. When Mary Jo and I were
talking earlier, the past couple weeks ago, she mentioned the fact that you had
some ties with the VA, this group has ties to the VA’s ear?

The reason I bring that up – I’m a service-connected
disability, been going to the VA since I got out of the service in 1952, and
this is the first time that I’ve heard about this myhealthevet. While you folks
were talking about it, I went on the Internet and put it in my
“Favorites” so I can go back and review it a little more.

MR. MAGIERA: Good for you.

MR. BROWN: But I think it might behoove the VA to increase this
information to the veterans that this is out there so they can take use of it.

MS. DEERING: In our third session today, we will have Jimmy
coming back and speaking about what he’s done locally to reach out to the
veteran population, and I don’t know if that will be the same type of activity
that took place in your environment, but Jimmy can certainly take your contact
information and be in touch with you directly.

DR. COHN: And, George, that was actually a person representing
the Veterans Administration who is part of our staff on the Workgroup, so I
think she heard you. Thank you.

MR. BROWN: Just a suggestion, don’t need to say ashamed of
myself, but I didn’t know this was available because I’ve relied on the VA for
many things – I’ve got a scooter from them, I got a grant for a disabled
home, and I thought I was pretty much up on it, but I find out now that I
wasn’t.

MS. DEERING: You know this actually – this is Mary Jo
– and this suggests a real challenge. George, you have been a CapMed user
for so long, you’ve got your USB, you’ve got all your information. You don’t
yet have myhealthevet. The question to VA is: Can you take his USB and dump his
information that he’s collected over all these 10 years and put it into
myhealthevet for him?

MR. BROWN: Well, that’s a good question, and I think they would
be able to because all they’d have to do is take my health key, the jump drive
I was talking about, plug it into their system, and they could dump it in for
at least the stuff I want them to put in.

MS. DEERING: We’ll have you come back in a year from now and
talk with Jimmy and everybody and we’ll hear the story of how it happened,
okay?

MR. BROWN: Okay, fine.

DR. COHN: Jeff, I think you’re the next question, and then
Gene.

MR. BLAIR: It is a pleasure to hear positive stories about how
something like personal health records could be helpful, not only positive
stories but even enthusiasm about that. But that’s not where my question’s
going to lie.

My question is going to try to find out from all of you who
have benefited from personal health records and are in many cases even
enthusiastic about personal health records if you have tried to share this
benefit with either your friends or your relatives and if you’ve had experience
where they either are not able to make use of it or don’t want to make use of
it or object to making use of it.

What have you run into in terms of barriers of others, friends
or relatives, to getting the same benefit from the personal health records that
you’ve been enjoying?

MR. MAGIERA: I can kind of answer that. I think that one of the
big problems I find is that there are a lot of veterans who still don’t know
how to use computers properly yet. And I think once you can teach veterans how
to get on to myhealthevet and how to use it properly, I think that barrier is
broken. Then you will find the benefits.

If you don’t know how to use something, and you can have a
beautiful Corvette, but if you’re not a real good driver and you don’t know how
to use the power, you might as well get a Volkswagen. This is the same thing.

Once you get in there and you learn what you can do with the
power that you have there, you’ll go back again. I guarantee you will. It’s an
educational problem.

MR. BROWN: This is George Brown. My experience with trying to
share this, my CapMed, with friends and family has been both positive and
negative, and I think I’d have to draw the line as to the age group that is
positive or negative.

Somebody in my age group, in the 70s or so, that has health
problems, they’re very enthusiastic about learning something like this and
setting something up. I run across an individual in my family or a friend
that’s in the 40s or 50s, they don’t seem to be too interested because they
don’t have the health problems, they’re not taking the medications, they’re not
going to the doctor as much as us older folks are, and it’s just something
they’re going to worry about in a later stage in their life.

MR. FOLEY: Tom Foley here. I’m probably the only one, my wife
and I, with Geisinger HMO. The rest of my family are in other areas of the
country and I don’t know if they have that available.

MS. DEERING: This is Mary Jo. I only wanted to add a little
marketing pitch in that there are other plans and providers that have these, so
you could tell them how wonderful yours in and then you could tell them to go
to their doctors and ask for one.

MR. FOLEY: Yes, and I might also add that I had a urologist and
an ophthalmologist that I was using that are not part of Geisinger – that
is, they could not input their information in the Geisinger system. So I have
opted to going, or ask to be put in, with doctors who have access to my chart
for my urology and my ophthalmologist and all those tests and stuff will now
become part of the record for me to access.

MR. MAGIERA: May I say something about younger veterans maybe
not using it as much also? For one thing, again, they don’t know about the
program yet. But there’s a lot of stuff in there for young veterans. There’s
health, there’s exercise programs, weight-lifting programs, there’s all kinds
– there’s more than just medical information per se. You know, I have that
broken out.

I mean, you can go in there and it’ll tell you how to have a
101 diet management program, how to exercise properly, how to ride a bicycle
properly, how many miles you should go to lose a few pounds or whatever it’s
going to take.

There’s a lot more to myhealthevet even for young people, but
then again, what it is, the young veteran has to know about the program. And
once they do find out about it, they’ll go to it to find these things that are
in their age group. That’s what’s good about myhealthevet. It’s just not about
older veterans. It’s about young veterans. It’s about the veterans who’s coming
out right now, and the veterans who are coming out right now are young and they
know how to use computers – they all use computers.

And when they find out about myhealthevet, I’ll guarantee you
they’re going to go on it, because I’m experiencing it right now. I’m doing
classes on weight-lifting with young veterans who come into the VA and the
first place I send them is myhealthevet and say, go look up some of the
myhealthevet tools in there about weight-lifting and how to take care of your
body properly.

So there is things here. They just need to know.

DR. COHN: Okay. And Gene, I’ll let you ask a question –
you’re next.

I just have a question, Jim, only because we didn’t really have
a formal introduction of you now. Are you actually employed by the VA or –

MR. MAGIERA: Yes, I am.

MR. BLAIS: I am also.

DR. COHN: Okay. In terms of your positive statement, I just
wanted to make sure that we had full disclosure on that, okay. I mean, thank
you – I just wanted to clarify that. Gene?

MR. STEUERLE: I wonder if any of our speakers have run into any
obstacles on the part of providers who feel that since they’re coming in with
information or demanding information – I’m not just talking about what you
would do on line – that you’re adding to the time demands on the providers
and so they react negatively.

And only by way of anecdote, I remember one time recently when
I was forced to use a formulary and I called the doctor. He was very upset
because he had to go through all this stuff just to switch my prescription.
Well, if you think about it, it’s not worked into his time schedule. He had to
figure out whether he could charge or not charge for it.

And if there are additional time demands on this system, it has
to come from somewhere, and often in some ways they’re not chargeable. If you
go into a doctor and have a lot of information and want to talk about and he
schedules you for eight minutes or whatever it is, he’s got to figure out how
to make that up somewhere else.

So I’m just curious whether there’s been that type of reaction.
And it’s also related, I think, to the Veterans Administration a little bit,
because my sense is a lot of services in the Veterans Administration in truth
are queued – that is, you know, there’s a fixed budget, and so the way the
Veterans Administration solves some of its problems – this is common in
social policy – is they set up queues or lines and some people get in and
some people don’t and whether they’re getting it because you triage it or it’s
first come/first serve or whatever else. So the more time demands on the system
with a fixed amount of resources where you can’t charge it, the more it could
push against something else.

So I’m curious whether that means there has been some sort of
reverse reaction. Or, could I have it totally upside down? People are glad
you’re coming with the information because it makes their life simpler and they
can act more quickly and efficiently. Any of the four of you – not
necessarily all of you – but I’d like a comment.

DR. COHN: George and Tom, did you hear the question?

MR. BROWN: Yes, I can answer it two different ways.

First of all, I find when I go to the VA that they are very
receptive to information on my polio syndrome because it is a disease that’s in
past history and a lot of doctors don’t know anything about it.

I also belong to a post-polio support group down here and we
have a lot of literature, medical literature, for doctors we go see. Now, when
we take that in, there seems to be – I wouldn’t want to use the word
“resentment,” but it seems like we might be infringing upon their
medical knowledge. And they’re not too receptive to that.

This is a unique situation, though, when I’m speaking about the
post-polio syndrome.

But when you go in with other medical information or questions
of diseases or conditions they know something about, they seem to be very
receptive. But when you go in with something that has a gray area of
information to them, they kind of give me the impression that “what are
you doing coming in here and telling me what to do?” You know?

So we kind of have a tendency to tread lightly on that.

MR. FOLEY: Tom Foley here. My experience is to receive
information. I have never found it necessary going to a doctor’s office other
than with a list of questions.

DR. COHN: Robert, do you have a comment on that?

MR. BLAIS: The easiest way to comment sometimes is if you want
to take the whole records with you, you can just – like a doctor has a
computer, you can just type in myhealthevet and just show him all your records
instead of – I don’t think you can do it on a Pen Drive yet. You can just
type it in and just show them everything you got right there; all of it’s all
manually input.

I think later on they’re going to incorporate it so that it’s
going to start showing the records that the doctor’s put in from the personal
records now to myhealthevet web page.

DR. COHN: Okay. Cynthia, I think you’re up next for a question
or comments.

MS. BAUR: Well, I just wanted to thank all the speakers because
I think they’ve done a great job of illustrating some of the issues we’ve been
thinking about for a long time and the connection – to go back to the
discussion this morning – the way that some of the policy goals and the
strategic interests that sometimes don’t get connected do get connected in very
interesting ways.

And we actually already happen to have, interestingly enough,
three national health objectives on some of the issues raised right here.

One, I think, on this question of access. So often we think
about access to the computer technology itself, but what I heard very clearly
from the speakers today was access to information being so powerful to them.
And I didn’t hear anybody saying 11 million pages overwhelms me. What I heard
was 11 million pages is really interesting to me.

And I think that’s a very important piece of information for us
to keep in mind and probably blows up some of our assumptions about what people
are really interested in.

I also think it points to the importance of user-centered
research and the need for that, to question some of our assumptions about what
people are really interested in.

The other thing that I heard that I thought was really
interesting was this – we talk about it in health policy in terms of
health literacy, and I heard some very interesting comments from the speakers
about the intersection increasingly of health literacy concerns. What is it
that people understand? How do they use information? And how does that work in
an electronic environment?

And I think PHRs are a really interesting place to kind of test
out some of those issues and questions.

And I think, then, the final one is to this issue of quality.
And I was really interested in your comments about the reliability and quality
issues and sort of how you sort those out for yourself, because again I think
David had referred earlier this morning about how some of the agencies are
thinking about their roles as providers of reliable, credible information and
how to integrate that with the PHR function. And I think that’s something that
really we’ve heard from the speakers but deserves greater attention as well
because that is an important role that we’re already playing for the public.

DR. COHN: I think, Marjorie, you have a question, comment?

MS. GREENBERG: Yes, thank you. First of all, I want to thank
everybody. Having worked with this Committee for a number of years, I was just
very excited that actually two testifiers were able to share information that
was personally useful to them, a testifier here versus one of the phone finding
out about myhealthevet.

I said, you know, often we deal with very abstract ideas and
concepts and it was exciting to me to have that exchange and I thank you all
for participating.

We’ve heard a lot about access to information and how valuable
that is and we’re all believers here around the table, that’s for sure, but one
of the topics – I don’t know if you were all in the room or probably the
gentlemen on the phone maybe didn’t hear – in the first presentation,
there was a lot of talk about privacy concerns, security concerns and maybe
issues related to limiting access to data.

And so I just wanted to ask any of you who do have the type of
record where you are entering information into the record, what types of access
controls you have as to who can have access to that information and how
important it is to you or what kind of priority you put on those issues of
being able to keep some of the information that you enter perhaps so that you
can be looking at

patterns and identifying what’s important to you, keeping that
confidential and sharing it perhaps selectively with some providers and not
with others, or whether those are both functionalities that you have and how
important those are to you.

MR. BROWN: This is George Brown. I’d like to fend that question
because I’ve got to bug out of here. I’ve got another appointment pretty soon.

In my case, with this healthy key, the one that’s plug into the
USB ports of computers, I have a password built in there, first of all to
access it, then after that I put in only the reports that I want a particular
doctor to see and I can eliminate any other reports or he’s not able to access.

Privacy is of importance to me because of the way things
operate in this day and age and identity theft and everything else, so I try to
keep my personal records as private as possible. And I know that it’s in the
public view right now, the Privacy Act and how important it is, and some people
think it’s a real pain that they have to sign these forms and everything else,
but I know it’s a necessity. And God forbid we live in that kind of an area,
but we do.

But I feel that with this program that I am able to keep the
things private that I want to keep private.

With that, I want to thank the group for listening to me and
I’m very hopeful that this thing is going to expand to help other people in the
future. Thank you, and goodbye.

MS. DEERING: Thank you, thank you.

MR. FOLEY: So long, George.

MR. BROWN: Right.

MS. GREENBERG: Anyone else want to comment on those issues?

DR. COHN: Yes, Tom, do you have a comment – or Robert?

MR. FOLEY: I’m not big on privacy. I respect what George was
saying. I understand that people do have concerns about it. It’s just not one
of my biggies.

My experience with My Chart here, it is only available to me
unless I use it to schedule appointments or request appointments or information
that then goes to, I guess, another computer someplace and then eventually to
somebody who says, yes, I’ll reply, and that information comes back. But I
don’t believe anyone has access to my particular My Chart. And that’s an
assumption. And if they do, that’s okay, too.

MR. BLAIS: Nobody has access to your records because you have a
user name and a password and that’s it.

MR. FOLEY: Yes.

MR. BLAIS: That’s the way myhealthevet works.

MR. FOLEY: That’s what I have – user name and password.

MR. BLAIS: Yes, so if nobody has it, then nobody can get in.

MR. FOLEY: That’s my assumption. But – [laughs] – I
know that there are many, many things that can be –

MR. MAGIERA: In my case, as far as – you know, the
government, I think they know everything about it. I’ve been in the military so
I think the government, they know everything about me anyways. They probably
have my Social Security number 20 times over.

But I do worry about private sector. I do worry about some way
that someone beyond the government could get my Social Security number or
something and steal my identity. I don’t know if they’d want it, but that does
bother me, that does scare me, and that does bother a lot of veterans. When you
have to start putting down Social Security, that does have an effect.

But I think the benefits override it, and I think the security
that myhealthevet has with their e-vaults, it’s secure as far as myhealthevet
is. Once you get the material, that’s a different case. Your computers better
have good virus programs on it or firewalls on it or if you’re downloading that
information into a library, printer or someplace, you better go pick it up.

Again, a lot of this is educational. But that does bother me
– accidentally someone who does leave something behind.

What’s nice about myhealthevet, too, is if you don’t log off,
within about 10 minutes it will shut down, it will log you off. Ten minutes is
a lot of time, so you really don’t want to do that, but it will log you off.

MS. DEERING: This is Mary Jo and I have a question for Tom
Foley. And it may be sort of a hypothetical question and I’ll take a
hypothetical answer.

Just in terms of context, my understanding is Geisinger is a
Pennsylvania health care provider. And it has to do with the value that this is
for you and how important having a system like this is.

Specifically, this hypothetical question is: If you move to
Florida or if you moved out of state, having had this experience with My Chart,
how important would it be for you as you look for another doctor that either
they had the same thing because you knew your records were already there, or at
least you hoped they were – I guess they might not be, come to think of
it; they probably aren’t – but anyway, at least they had My Chart and you
were familiar with it.

Or, if they didn’t have My Chart, because again that is a
commercial product that’s available to other plans and providers and Kaiser,
for example, I think has a version of it, Kaiser Permanent, but anyone, so how
important would it be to you in choosing your next doctor or health care
provider that they have something like that?

MR. FOLEY: If the options were available to me, choose on that
basis, I would choose a provider or a group of providers that I would have
access to a system similar to it.

MS. DEERING: Thank you.

DR. COHN: Now, John, do you have any questions or comments at
this point?

DR. LUMPKIN: Simon, I think that this was a fascinating panel
and I’d like to thank the panel members. They participated like I did,
virtually.

Gives us a lot to think about as we move forward this agenda.

DR. COHN: Yes, I agree. And I see Eduardo also has his hand
raised. Question, comment?

DR. ORTIZ: Yes, since we have a couple minutes.

First of all, in response to Mary Jo’s comment, just bring your
attention that I was part of a study that we did at Geisinger where we looked
at over 4,000 users. And one of the questions posed was: How much would this
influence your choice of a provider in the future?

And there was an interesting response curve. Twenty percent of
respondents said it would make a huge difference in our selection of a
provider; 20 percent said it would make absolutely no difference whatsoever in
the selection of a provider.

So you had these two spikes on either end. And all in between,
it was just kind of an undulating little flat line almost, which meant, maybe,
I don’t know, I don’t care.

So at this point it was an interesting theme. There was 20
percent on either end that felt strongly on both sides.

I just want to ask this question to the panel members only
because there’s so much that is made about the whole issue of privacy and
confidentiality in health care and it’s just in a way of trying to get a
relative importance in your mind.

You know, there’s tons and tons of stuff out there in terms of
access to your financial records. All the time, I mean, all the different
mutual fund companies and banks and everything else. You can pretty much get
access to your on line financial information any time, anywhere in the world by
logging on.

And, you know, there’s a little bit of security in terms of
user name and password, but it’s easy to hack into that and we’ve seen that
many times. Lots of problems with identity theft.

So I’m just kind of wondering, from your perspective as a user,
as a patient, as a user, how do you rate the concern about privacy about
medical information versus privacy, confidentiality about financial
information, because it’s kind of ubiquitous in the financial world because
it’s already moved out there and we do it, but yet this is a big obstacle in
terms of the medical world because we haven’t done it yet, so people keep
throwing that out as an issue?

And I know me personally, I’m much, much more concerned about
people having access to my financial information than my medical information.
Now, of course, I don’t have HIV and I don’t have other things that maybe I’m
as concerned about. But I just would like to hear from you guys what you guys
think in terms of the relative importance of people hacking into medical
information versus financial information.

MR. MAGIERA: Well, they’re both really important. You don’t
want to be able to hack into either thing. So that’s why you need someone to
teach, you need trainers, you need someone who can teach veterans.

I’m going to speak as a veteran, that you have to have those
safeguards that I’ve mentioned earlier. I trust the e-vault. I don’t have a
problem with my information going into an e-vault that I know is highly secure
and it’s being checked on all the time. I don’t have a problem with that.

Financially, the same way. If I know that that bank, whatever,
has that type of security there, I’ll feel safe with them; I don’t have a
problem.

The problem is beyond let’s say the bank or the e-vault that’s
down in Austin, Texas, where all this information is going into. It’s what is
happening to the information once I receive it. Do I just throw it in the trash
can? I might have my Social Security number, I might have all kinds of numbers
on there, all kinds of numbers on there, financial numbers.

We need to teach veterans to dispose of information when
they’re done with it properly. That’s where my fear is. Otherwise, I don’t have
a fear at all of it. But we need to train – that’s so important.

Even private sector, I mean, they need to know that you just
can’t take paper anymore and just throw it in the trash can. There’s people out
there who might pick it out. You need to know that you can’t leave that stuff
behind or in an open computer. When you open things up and you present your
information, you have to make sure you’re not in a forum where people looking
over your shoulder can pick out things here and there.

I think it comes down, to me personally, it’s my
responsibility. It’s my responsibility to take care of my end of it, as long as
the bankers or whatever, financial side, is taking care of their part of it.
And how do I check on them?

I guess I would look and see if people had complaints, they’ve
had problems. If I find in the future that myhealthevet is having problems with
their e-vault, I’m getting out. It’s not a 100 percent cure for anybody, but
it’s a beginning and it’s a start. We have to put some trust somewhere. I mean,
you have to trust somebody at some point.

We can pick everything apart. I mean, I can pick this sign
apart – you know, it’s a little too black, my name’s should be a little
– we can pick anything apart. But we have to take some trust. You have to
trust somebody at some point, and that’s what we have to do. And education is
probably the most important part. Education, education, education.

DR. COHN: Robert?

MR. BLAIS: Yes. I work in the IT field, so it all starts with
your computer. You have to make sure it’s always clean, like nobody installs
any key loggers so they can go back and read all your key strokes. So really
you have really a good protected computer, too, to protect yourself. If it’s
wide open, then people are going to have at all your information no matter if
you change your password every day, you know? So you have to have a good,
secure computer, then the chances are better you won’t get hacked.

DR. COHN: Tom, do you have any comments about that? Are you
still on the line?

MR. FOLEY: Yes, I’m still here. No, I think I expressed earlier
that that is not one of my big concerns. Earlier, I was asked a question on a
new provider, would I be looking for the My Chart thing, and I think I
mentioned earlier that I’ve just changed two doctors. They were under contract
to Geisinger but not part of the system and could not enter the system and
provide the results and all that kind of stuff.

Security at my age right now, it’s not a concern. My big
concern is I’ve got a book that’s got all my passwords – everybody wants
something different and have stars and this and that. Done.

DR. COHN: Thank you for the comments. Well, I think we’re ready
to wrap up here. I actually want to thank our panelists and Robert, Tom,
George, Jim, thank you very, very much for taking time to sort of meet with us
and discuss your views on all of this.

Robert, did you have any parting comment here?

MR. BLAIS: Yes, myhealthevet is not just for veterans. I guess
anybody can use that, right?

MR. MAGIERA: That’s right.

MR. BLAIS: So it’s not just veterans can use that web page to
stow your medical information.

DR. COHN: Okay. I think that’s an interesting note.

Well, with that, I really want to thank you. It’s been a very
useful morning. This last panel’s been fascinating and very helpful.

So we will take a lunch break now. We will reconvene at 1 p.m.
Thank you.

[Lunch break begins at 11:59 a.m.

Meeting reconvenes at 1:11 p.m.]

DR. COHN: Okay, would everyone please be seated? We’re going
to get started in just a minute or two.

I want to welcome everyone back, and, sorry that we’re running
about 10 minutes late. I want to welcome David Williams. You’re talking about
TRIAGE Online, and thank you for joining us. And then we have Patricia Brennan,
a pleasure; thank you for joining us. And you’re talking about home health and
personal health records, is that correct?

MS. BRENNAN: Yes, that’s correct.

DR. COHN: We’ll look forward to that. Okay, well, David, would
you like to start out?

AGENDA ITEM: Panel 2, Consumer Perspectives,
cont. — Presentation – LT. COL. DAVID WILLIAMS

LT. COL. WILLIAMS: Okay. I’m Lieutenant Colonel Dave Williams.
I’m a Deputy Director for IM for the EMIT. Under full disclosure, I work for
the military, number one.

Number two, the reason I have my particular job now for eHealth
which deals with the personal health record is about a year and a half ago I
was a user when they started to deploy it, and I felt that eHealth is right
where we need to go from the military standpoint to serve our beneficiaries,
and I lobbied extraordinarily hard to get the job that I have now, so I was
very pleased.

So I went from an early adopter and user to the person defining
requirements for eHealth.

That being said, I would like to give an overview of what we’re
doing for eHealth overall through TRICARE Online and then talk about the
personal health record.

The agenda is talk about operational vision, TRICARE Online,
operational view of that, current functional overview, functional vision, who
we’re working with – we’re not going alone on this, and I’m very glad to
be following the VA; we’re working very closely with them and I think Robert
and James hit the nail on the head.

We’re working with Miss Price on myhealthevet and we’re trying
to get the same glide path, and I’ll talk to that in a second.

The operational view – the system that we have now for the
MHS, military health system, the sun does not set on our activities. We work
around the world; someone’s always working on it.

So the system we push out for the personal health record as
well as eHealth overall has to be available at all times. Some of the domains
that we touch go from managed care, contractors that we contract some of our
health care out, to our composite health care systems here, which really is our
health content record, electronic health record.

We view the PHR and our eHealth initiatives overall providing
the reach for our health care record that we have. The information in that can
be reached around the world to the beneficiaries as well as the providers.

And we have the personal health journal over here. It’s one of
the domains. Plus, we serve all the other entities that we talked about,
everywhere from providers down to the beneficiaries as well.

And I think, as I start walking down this and talking about the
applications we provide, I think it’s important to remember the big push and
why I felt very interested in these particular services.

Thirty percent of the people on active duty move every year. We
have a relatively young population. So what we do is take young, child-bearing
people, move them away from their extended family, and then we send one of the
spouses to a place where there’s a lot of sand. So we have people almost in a
foreign state, as they view it, trying to get access to health.

So anything we can do to place it on the Web in a user-friendly
manner to provide that access is something that we’re really driven to do so.

This is sort of our current, and again I did not collaborate
with James or Robert before they came on, but if you type on TRICARE on Google
search and you get – actually, this is a dated slide; I made this slide
about six months ago. I typed in “TRICARE,” which is our health care,
it goes under TRICARE, you get 1.8 million hits now.

So for a beneficiary trying to get access and information about
the common health care that we provide, it’s very difficult for them. I kind of
view the Internet now as a place that is almost like entropy. You can put
information in but it’s very tough to navigate at this point. It’s almost like
a library with no Dewey decimal system in some respects.

That being stated, one of the benefits and one of our missions
for TRICARE Online, which is our secure portal, is to try to organize it –
one-stop shopping for the beneficiaries.

So as they move from site to site, from country to country, if
they have access to the Internet — and surprisingly, you’d be very surprised
at the number of people that do have access; no matter where you send them,
they seem to get on the Internet – they have the same look and feel and
one-stop shopping for the information. So out of the entropy, we try to
organize it.

We broke TRICARE Online into two sides. It’s .com – this
is the unsecure side, and this is the secure side. And what we do is type,
organizing logically, the different entities that want to work with us, outside
agencies, VA, purchased care, the service portals, Army, Navy, Air Force —

MS. DEERING: [Admiring the graphics] We want your techie!

[Laughter.]

LT. COL. WILLIAMS: You can imagine what we’ve done on the Web,
then.

[Laughter.]

LT. COL. WILLIAMS: So from the open portal side, our business
partners, service portals, for TRICARE Online, health and health resources.

Again, echoing what we’ve heard from the end users there at the
VA, the Department of Defense and VA are working very closely to this. We have
contracted out currently with the same contractor for our health content. We
both have HealthGate currently for that information.

Between DOD and the VA, we have beneficiaries that are served
by both DOD and VA, so we try to have some symmetry, and I’ll talk more about
that in the future.

And it’s very important that when our beneficiaries log on, and
if they go in through TRICARE Online, we know that they’re hitting trusted
health care content.

I typed “cancer” on it just before I came up here. I
had over – I think it was 20 million hits on cancer; the winner was
“astrology,” was the second-most hit that came up. So if they come in
through TRICARE Online, we know we’re giving them information that has been
reviewed and trusted.

Down here on the secure side, the MTFs, the services, Army,
Navy and Air Force, have opportunity to expose information on the private side
as well as the secure side. The providers here, when I talked about CHES-2 down
here, the providers can log in from anywhere on the globe, secure an access to
medical record.

We have the service portals, learning management system. This
is the PHR. You log in to get to it, so it’s on the secure side.

Web enrollment – when our personnel move from state to
state, you have to re-enroll in your hospitals. What we want you to do is do
that over the Internet. Currently, you have to actually drive down to that
facility to register at the hospital.

Next year, through TRICARE Online, you’ll be able to just log
in again over the Web. We’re trying to make it as easy as possible to provide
access to care to our beneficiaries.

Learning management system – it’s very important as we go
through the PHR in our next phases, which I’ll talk about in a minute, that the
beneficiary has the opportunity to get some education. We’re opening up some of
the learning management system so the beneficiaries can learn about their
diabetes, can learn about if they have asthma, and try to empower the
beneficiaries; it’s his state in the care.

Now, I heard a question earlier: If we educate the
beneficiaries, will they tie up more time with the provider? I’m a Nurse Corps
officer and I’ve found that the best patients to work with are the ones that
have been educated because it may take a minute or two more to talk to them,
you can communicate so much more information. It saves time in the long run,
overall.

Facility pages – our hospitals have two websites. Now,
they have the home-grown one that they keep; now they’re migrating to TRICARE
Online. And our goal is, and we’ve done this to a great extent, is if you log
on TRICARE Online, it brings you to the hospital that you’re enrolled in. So
log up, you go right to Walter Reed or Bethesda or Andrews, if that’s where
your provider is. And each provider has their own web page, each clinic has
their own web page.

And over here – it migrates over there. We’ll have secure
messaging in the near term.

And on line appointing. The VA and DOD started working together
about two years ago and we drifted a little bit apart; a year ago, we came back
together. I’m working with Miss Price who’s doing a super job.

And the VA went very heavily towards the clinical side, the
patient health record, and I think they’ve done a super job, personal health
record. We went more on the administrative side in terms of being able to make
your appointments over the Internet, just like you make your airplane tickets,
just like you go shopping. And I’ll show you that in a second.

So now that we’re working together, we’re trying to get the
best of both worlds, capitalizing on the work that Miss Price and her team has
done for the personal health record, and they’re working with us to pull in our
appointment business process.

TRICARE Online is the secure, one-stop shopping portal for
eHealth and telemedicine initiatives for DOD. What we currently offer in
TRICARE Online is a personal health record, appointing – you can appoint
yourself to your primary care provider as well as specialty clinics such as, if
you want to get your eyes checked, if you want a school physical, your breast
mammograms annually, things that you shouldn’t have to go through your provider
to talk to.

TRICARE benefits link – a lot of young soldiers don’t know
what their benefits are, so it’s a good opportunity for them to go off and to
actually understand it.

We have 18 million pages of trusted health content which I’ve
talked about, but I think cannot be overstated. And other utilities that we
have there we’ve seen great use of is the drug/drug and drug/food checker. You
can log in if you’re on medications and actually interact to see if the
medications are compatible and if the food you’re taking is all right. Here
again, try to educate the patient so they can participate in their care.

The non-beneficiaries provider – we’re trying to push this
open so the providers use it as well. We’re required to expose certain portions
of the medical record now to the providers, pre- and post-deployment health
information they can log on and see as you come in as a patient. They have full
access to all your labs, all your consults right now over TRICARE Online
through their systems, and we’re going to open that up to CHS, too, you have a
one longitudinal access to the electronic health records, which would be
TRICARE.com, role-based security.

I-learning and web-based learning is something that not only
will be available to our beneficiaries but our providers as well, anthrax
training and things of that sort. Again, it’s one secure portal for MHS.

If you looked and logged in to TRICARE Online, right now the
page that you’re looking at, no log-in is required. What we’re trying to do is
make it easy as possible to expose as much information that we can currently,
prior to requiring a log-in.

So, go to the url tricareonline.com and you’ll see this, and
you’ll see some of the health content information and the interacting tools for
training on it. Eventually, it will fall behind our password, but we’re trying
to change behaviors of people as quickly as possible by exposing as much up
front and they can register as time goes on when they find there’s some
utility.

Currently, we contract out for our personal health record and
we’re using a product through HealthGate but it’s a WellMed, WellMD personal
health record.

The issue we have with this – and there’s nothing bad
about this in particular, but we wish to do is to have it interactive with our
computer electronic health record, case in point that you’d be able to see your
labs, see the progress, and that’s something we’re well on our journey to do.

Secondly, we’re working very closely with the VA that it’s the
same look and feel. So we heard earlier that the veterans, young veterans,
coming out don’t the use the system; there’s education issues associated with
it. And we have similar issues.

But as the veterans come out after 10 or 20 years of working
within the service, there’ll already be accustomed to it, this is the way
they’ll do business. When they get on to the VA, we’ll have the same look and
feel.

And we also are in a process of defining the requirements that
not only our particular personal health record, which may be the same as the VA
– we haven’t gone down that road that far yet – but at least we’ll
cross-populate. The requirement is that at any given point, you can press a
button and the two personal health records will synchronize, so as you move,
you go from the DOD to VA and back and forth, and as I said, there’s an overlap
of about 30 percent of our beneficiaries that are dually served, will have that
same information.

This is an example that you can put in your current health
conditions of our personal health journal. We’ll talk some more about that.

Our total stats in reference for TRICARE Online – we have
over 220,000 users right now that are registered. The personal health record
right now, currently we have 6,060 people that have used the – and logged
in, registered, under the personal health record. What is interesting is it’s
been exposed for 24 to 30 months, and really the growth is in the last year
that we’ve had, out of that 6,600 users, 3,800 have logged on, registered, in
the last 12 months.

So we feel that we’re in the growth curve of this and we
suspect that will continue.

The number of users that log into our personal health record
currently – there’s about 1,000 unique users per month that log in, and
those users on the average log in three times a month. So we feel that’s a
pretty high usage rate for their personal health record.

Popular features that we got back were that personal health
issues that may affect users and family members, and again the VA personnel
talked about, it’s smoking cessation classes that you can take over the
Internet; your height and weight; am I at risk for diabetes; am I at risk for
heart attack; and there’s a series of questions that you interact with. That’s
extremely used.

And there’s some thought for high usages because you can sit
around and play with it. This is the opportunity, the discussions you would not
have in that eight-minute appointment with the physician. You can sit there and
actually interact with a tool that can kind of bring you up to speed and
educate you so when you do see the physician, you can maximize that eight
minutes.

Appointing – we’re trying to give a suite of activities or
applications through the Internet that will bring people on. Appointing started
in 2002. You can make appointments for your primary care provider and other
sub-specialties that I talked about. You can see we’re on exponential growth.
2002, we had approximately 9,000 appointments made over it. 2003, we’re up to
about 15,000. 2004, we’re at 50,000. And we continue to grow.

There’s a good return on investment for us. If we make the
appointment over the phone, by contractor, the costs in the industry range
between $7 and $12, which we have similar costs. If you do it over the
Internet, it’s the function of use; at 50,000 appointments, we’re at a
break-even point in terms of what the application cost us. Beyond that, as we
make more annually, we’ll have a significant return on investment, the more
appointments made.

But the ease of making an appointment isn’t the only thing.
When you’re making the appointment, you can print out directions to the
provider, to the hospital. You also leave from your home or at work with a
sheet of paper that tells you what time your appointment is and who your doctor
is and driving directions to the clinic, the clinic hours, phone number, so you
don’t have to write anything down.

What does that mean? Well, we’ve found that since we’ve been
doing this, the no-show rate – again, we consider a no-show or access to
care issue because if you make an appointment and don’t show up, you bump
somebody that would have – we’ve found that no-show rate military-wide
runs about 7.5 percent. If you make it over the Internet, TRICARE Online, it
drops to 4.4 percent. So we feels that’s significant numbers.

Beneficiaries – again I keep using the phrase
“one-stop shopping.” We’re looking for a future vision, working with
the VA especially for the PHR, a fully integrated personal health record that
communicates with your electronic health record.

Patient-to-provider secure messaging so you can ask questions
back and forth from providers and patients, that’s an issue that the patients
want very much and the providers, there’s mixed camps it’s a good idea or not,
from the provider standpoint.

Drug renewals/refills – provider-directed, Web-based
education, for example, information prescriptions. I don’t know if you’ve heard
that term or not, but we’re in the process of working with the National Library
of Medicine and Johns Hopkins as well as Conemaugh Health Systems to try to
automate that.

So when you go in and see your provider, they will actually
give you a prescription pad that’s circled, so when you go back home, you can
log back on to TRICARE Online and it’ll direct you right to that subject matter
at the National Library of Medicine. So we’re very interested in that. They
want more health content and they’ve requested more tools and calculators.

Administratively, we want to continue to expose more
information to clinics – provider information, access to care per our
contract purchase care, managed care support contractors, we want to expose
their appointments there in the long term.

Appointment reminders are on the glide path, so not only that
you have an appointment, once we have secure messaging we’ll be able to remind
you the night before or the day before of your appointment and what you need to
do in preparation for that appointment.

And entitlement and on line enrollment – again, as you
move from hospital to hospital.

Providers – role-based security, single sign-on to
clinical applications. We have a large number of clinical applications out
there now. What we want to do — I think we also heard that earlier that a
gentleman had a book with a list of passwords that he tried to keep up with
– now that we’re rolling out a single sign-on capability that once you log
on to TRICARE Online under that role-based security, as a provider, you can go
to the clinical systems that you have authorization to use.

Secure messaging I talked about.

Trusted medical reference, the resources, we’ll increase that.

Telehealth portal is everything from telemedicine up to
actually full-blown video interaction that is on the glide path for TRICARE
Online.

Patient-directed Web-based education – I’m sorry; I went
over that already.

And administrative functions.

We feel very strongly that we need to have unity of purpose as
well as unity of effort for our soldier members. We want to leverage the
requirements and best practices, what the VA has done, and the VA is in the
process of doing the same for us.

In the six months, we’re shared over 1,000 pages of
requirements on the eHealth portals that we’re building towards.

Secondly, we are both on our requirements generation IPT, so
the DOD’s at the table, as well as the VA on our side.

We’re also leveraging communities on the commercial side. We’re
collaborating with the National Library of Medicine, but on the community side,
we are able to work with Conemaugh Health Services, a 12-month Congressional
project. Their interest in us is taking the eHealth portals that we have and
push it out to the senior centers that they have in Pennsylvania, so take this
ability, move it out, expose that information at the senior centers because
it’s a rural, poor area but have the machines there; we’re working with them.
And also with Conemaugh is interviewing our end users to find out what the
pent-up demand is for it.

Conclusions are:

TRICARE Online, at least from the MHS standpoint, is our
one-stop shopping for health information and services.

PHR, with the surveys we’ve done, is clearly one of the top
four requests that the end users have consistently asked for.

On line appointing continues to grow and continues to have
acceptance on that.

We’re looking for a fully integrated PHR. That’s what we’re
moving towards as quickly as we can. And also, patient-to-provider secure
messaging.

Our collaboration continues with the DOD, VA, National Library
of Medicine, industry, and we’re really pushing this because the conferences I
go to, beneficiaries really want to have access to their information and they
want one site that they can go to to get that information.

That concludes this portion of my brief.

DR. COHN: Okay, David, thank you very much. I think we will let
Patricia present, if that’s okay, and then we’ll have questions and discussions
after.

[While the next speaker is setting up the computer, Dr. Cohn
asked Lt. Col. Williams to continue.]

I think we were asking, was there another dimension to your
talk that you were going to give as a user or something like that, I think?

LT. COL. WILLIAMS: Oh, yes. I didn’t know if it was a question
up there. No – the reason in particular that I started – lobbied
– for this job is the idea of actually getting on and using it for putting
information down. It’s very difficult when you move so frequently to have one
constant place you can go.

And from an end user perspective, the utility was great. You
had to log and get my information that I needed, make appointment. The trusted
health care content associated with it, I thought that was the greatest thing.

DR. COHN: Thank you. Pat, it looks like you are up and
running.

AGENDA ITEM – Presentation – PATRICIA
BRENNAN

MS. BRENNAN: All right, thank you very much.

DR. COHN: Thank you.

MS. BRENNAN: I’m Patti Brennan from the University of
Wisconsin, Madison, and I’d like to introduce my co-investigator, Laura Burke,
from Aurora Health Systems in Milwaukee. We’re going to be talking today about
health at home, personal health records in support of home nursing. And I want
to thank you for this opportunity to expand the concept of personal health
records from an object or a repository to a system of information that affects
the daily lives and the health of individuals in their homes.

Wisconsin is a large and rural area, and we find many
challenges in home care. Many, but not most of those, are faced by people
alone, without a health professional present. Sometimes a visiting nurse or
physician does come to the household – social worker, physical therapist
– but much of what we’ll be talking about today applies to the concept of
health as it occurs in an areas where there’s geographic dispersion, no central
clinic that individuals are coming to, where individuals are faced with doing
three complex activities – managing medication, monitoring health status,
and making timely decisions.

Now, these individuals are not disconnected from the health
care system, and when we speak about information that they’re doing in their
homes, there is certainly a connection to content that has to be transported to
or sent to a health care provider during an encounter.

But we’re largely going to be talking about what happens
inside the house.

We’ll begin first by talking about one of our projects that’s
going with Aurora Health Care, and this is a project we call Heart Care 2. It’s
the care of patients with congestive heart failure.

And I’m going to begin by talking with some comments the
nurses have given. What do they expect patients to be doing in the home?

First, though, I’d like to call your attention to the picture
of the calendar on the right hand side of this slide. This is the most critical
health information management device in the household. Calendars provide a
point of organization, of reminder, of recognition and coordination for a
family’s health information, and they’re absolutely essential when it comes to
managing people with complex health needs.

The nurses who care for patients with congestive heart failure
are largely caring for a population of patients who are older. They have values
and beliefs about health and health care – who should be involved with it
– that have to do as much with culture and family habit as they do with
the nature of the health problem.

These individuals have developed patterns in their household
already of interacting, of behaving, that they follow through with as they’re
trying to manage their illness.

Additionally, congestive heart failure, for those of you who
aren’t familiar with it, is a kind of illness that is characterized by
progressive decline. And our optimal goals in health care is actually to slow
the decline, or stabilize, rather than to return to a high level of wellness.
So, imagining moving about with a personal health record is actually not
central to our topics.

The nurses tell us, though, that they ask the patients to
monitor several things. They want to know:

How is the patient taking the medication? And this may range
from knowing did you or did you not take your medications as you’re supposed
to, to knowing on an hour-by-hour or day-by-day basis exactly what medication
was taken, in what sequence.

We need to know about the patient’s weight and this has much
implication to how someone actually gets weight, clothes on/clothes off/time of
day/what you’ve been doing before as it does to remembering and recording,
being able to see the scale, not lying, and writing down on a piece of paper
what that weight should be.

Very often, the weight will be written down on a calendar
which could later be reviewed with the nurse to look at the progress of change
over time.

Diet, and particularly salt intake, becomes important, and
you’ll notice the calendar is particularly bad for that; there’s not a lot of
place for writing salt intake information.

Monitoring the symptoms of congestive failure, including
comfort, breathing, pain and the ability to carry out activities of daily
living becomes important in different points in the care of the person, not all
the time. So the needs for health information change over the course of the
illness.

And finally, a very important nursing intervention with
patients in the home is something called the Health Activity Prescription.
Nurses encourage patients to carry out certain activities to either maintain
muscle mass or body strength or to manage the functional decline that occurs
with congestive heart failure. And keeping track of these instructions becomes
an information management challenge.

Largely, though, you must remember that the goal in home care
nursing is to have the patient become more and more able to make the right
choices, to understand what’s going on with them, who has to be involved, who
has to know, who should I be contacting, and how do I make that contact?

So our goal of health information management and the goal of
the personal health record in home care is very much to insure the patient’s
level of independence rather than to facilitate some communication between a
provider and a patient. It’s not just about having a record that can be
reviewed during a visit, but it’s about setting up with the patient the ability
to recognize their own patterns, to record and communicate about important
health data issues.

So the personal health record takes on an active role in the
patient’s life of increasing self-awareness and making them better able to
manage their own care on a day to day or hour by hour basis.

Now, how does patient’s self-report help in home care?

Well, first and most importantly, the person becomes actively
engaged and mindful of their health status. This has been shown to be
critically important in helping an individual attain better health outcomes
– that is, more awareness of yourself, what causes changes, what causes
crisis, leads you to respond to them in a better fashion.

Nurses who are involved with patients tell us that self-report
from patients helps them better understand the between-visit status of the
individual. But all data that’s acquired must be interpreted and acted upon.

Now, all data doesn’t need to end up in the hands of the nurse
or a decision support system, but someone needs to be looking at it and
integrating it into work.

So the patients are taught to look for three kinds of patterns
in their data. First of all, what is normal for you? The goal of home care
nursing is to help a patient live as normal a life as possible and you help the
patient use their home care record, use their personal health record, to
understand their normal patterns of sleeping, waking, when does their pain
occur, when do they get short of breath?

To recognize what is a departure from normal for them,
standards of care help at this point, but they don’t answer the whole process.
We have to understand the person’s pattern.

And finally, how do you respond to deviations in your
household? Maybe it’s you move and sleep on the first floor instead of going up
and down the steps every day for a couple of days. Maybe you take a call to a
specific clinician. But moving that into an individual’s home health management
is one of the goals of home nursing.

So in the case of our project, the heart care project, we’re
trying to look at ways to provide information tools to help patients better
self-manage.

Now, I want you to move a little bit more generally about the
process of monitoring health information in the home and talk for just a few
minutes about our experiences with understanding: What do people do with all
the health information in their households?

The eight pictures that you see here provide you with an image
of the various home health information storage areas we see – cupboards
and countertops; we see – it’s a little difficult to tell, I’ll enlarge it
for you later, a dog carrier with diabetes supplies on the top; we see file
cabinets and bookshelves.

The personal health record is stored, tucked away, laid out and
posted all over the household. So what we think that is a single document is
actually lots of little pieces of paper – brochures, scraps of material
– that were handed out to the individual, and lay people know what to do
with these.

Now, it’s quite idiosyncratic what they do, but they develop
fairly stable habits and they tend to be fairly effective for most people. Now,
most of you are thinking about that list inside your cupboard of when does
immunization need to be given next, or when was my last dental clinic, or
perhaps you’re thinking about those X-rays that you didn’t know what to do so
you stuck them in the basement. We all have health information in our home that
we organize in some way.

So we’re not launching into these people’s lives with something
brand new. As we try to bring information technologies to help, personal health
records to assist people, we have to build on what they’re already doing that’s
successful.

This, as I said, is the most common health information
management device in the home, calendars. And to the extent these calendars
become useful in people’s lives and able to communicate across multiple
platforms whether it’s an electronic calendar that can send messages or a paper
calendar that can be harried, the calendar becomes increasingly helpful.

But what we find for individuals who have complex health
problems is they tend to have health information management centers that tend
to be located around where they are also storing the objects necessary to
manage their health problem.

In the picture you see in front of you, you’ll notice that this
appears to be the home of a person who has diabetes. There’s a syringe box,
what appears to a notebook and pen, some supplies for testing blood sugar.
You’ll also note that this was organized on top of a box. There’s cereal boxes,
shampoo, we think there’s some Crackerjack or cluster candy in the background,
and then label “pet porter” is right across the front of this.

Inside this pet porter are two Rottweilers who are not
friendly. And when you think of personal health information management in the
home or where is someone putting a personal health record, I want this picture
to come back to your mind because it is not necessary in a flat, clean surface
protected from intrusion but rather it’s in the midst of someone’s everyday
life.

And it works for them. I’ve learned – we can’t get them to
put computers on top of pet porters. They won’t let us; they’re already busy.

Through these different studies, we’ve begun to understand what
constitutes what we call a personal health record system. It’s not a record;
it’s a record system.

First, there’s something that assists with self-monitoring.

Next, we have something that assists with communication. It may
be because it affords immediate interaction. It may be because it prepares a
person for talking to someone in the next visit.

Third, there is some content of clinical records, although as
we talk to patients more and more, they are most interested in remembering who
they saw and what that person said rather than actually having a laboratory
result of a specific encounter.

So, clinical records are a bit broader in the patients’ minds
than they are in our minds.

And finally, the personal health records system needs to have
some type of decision support. Now, very often it’s turning to a spouse to say,
well, dear, what do you think I should do about this?

But other kinds of decision support could be possible within
personal health record system structures, both those that would be
free-standing in the home, guidelines and books that we’re used to, as well as
those that might be Internet-based and a little more focused than the 1.2
million hits that Dave was talking about earlier.

I want to show you briefly how we’re beginning to envision this
in a new project now. Bringing you back to the heart project, we are building
within the Aurora system an interface that will be used both by patients and
their home care nurses to be an integrating source of some of the electronic
information that will be available or will be entered in by the patient.

And here, this particular slide depicts four important aspects
of it.

First, note that there will be a place for self-assessment
– how do you feel today? – importantly because our patients with
congestive heart failure need to give us daily updates and we will be prompting
them for particular symptoms, not broad-based health histories every day but
very focused ones.

Notice the traffic light image at the lower left hand side.
That’s a clue to the patient what status they are in. In out congestive heart
failure protocols, we have a very clear system of what actions should be taken
if you’re at a red level, a yellow level or a green level.

So the purpose of our interface in part is to remind the
patient where they are so they can begin to take action. Remember, the overall
goal here is to support independence.

We have opportunities for accessing additional information,
particularly coaching information, about managing congestive heart failure at
home in the upper left hand corners and you’ll see contact information is
presented.

In general, though, we have had some conversations with our
nurses to find out where they see this level of focus in personal health
management in their practice with patients. And earlier, Dave mentioned, was
there a concern that patients would show up with lots more information or be
lots more time consuming?

Nurses find that patients without information call a lot, and
so presently, without giving them information, they find that the patients are
calling and asking to have things resolved that require the nurse to call back
to the patient. So having a way to push information into the patient’s home
might be particularly helpful.

They are worried that the nurse could experience email overload
from the patient. I can tell you from the studies that I’ve read and reviewed
over the last 10 years, the email overload that clinicians are fearful of has
not appeared in any sector of this country. It may be somewhere that we’re
unaware of yet, but I don’t think anyone’s actually seen it.

A key challenge is that not all patients are accurate with
self-report, and this becomes very important as we think about designing
personal health record tools with different levels of, if you will,
trustability built into them. Some patients truly don’t understand how precise
their weight needs to be, for example, so they’ll report it in pound increments
as opposed to half-pound or quarter-pound increments.

So there is a lack of trustworthiness, not because the patient
is trying to be deceptive but because their level of precision isn’t as strong.

In other cases, though, if we’re going to engage a patient in a
personal health record, we have to help them be aware of themselves in a way
that is accepting. So it’s not simply asking a person to tell you how they’re
feeling but to get themselves comfortable in knowing how to make those
appraisals for themselves.

Finally, the nurses are worried that even in spite of giving
patients information through a personal health record interface like we’re
designing or through some advice brochure that they’ve provided, patients still
continue to have negative events even if they know what should be done.

And the challenge here then is to find out what motivates a
person to participate in their health care better and how to deal with the
individual who despite information may not act in the way we would like.

Nurses are not worried, at least in the congestive heart
failure practice, nurses that we work with are not worried, first of all, that
patients will get worried about the wrong things. So early in my work, people
would say, oh, my God, you’re going to tell the patient about the disease of
the month and they’re going to immediately have all the symptoms of that
disease. That doesn’t happen in patients and the nurses are seeing the patients
really calibrate themselves well.

Patients know when to call and when not to call. But it usually
takes one or two bad events to get them clear. When should I make the referral
to the doctor? When does the physician need to know that my values are so far
out of range?

And nurses believe that patients do pay attention; they do not
ignore the recommendations on their action sheets. So patients are trusted
actors in this process of health and health care.

We have a number of other observations that I’d be happy to
share with you and I’m going just direct you to our website at the health
systems group at the Industrial Engineering Department, University of
Wisconsin.

For the last five years, your tax dollars as well as some
foundation funds have provided us with a good environment for studying this.

Thank you very much for your time.

DR. COHN: Well, thank you both very much. Actually, Pat –
a point of some clarification: Are you part of the Industrial Engineering
Department?

MS. BRENNAN: Yes.

DR. COHN: Oh.

MS. BRENNAN: I’m a nurse and an industrial engineer.

DR. COHN: Okay.

MS. BRENNAN: And so no one knows where my office is.

[Laughter.]

DR. COHN: I can imagine. Thank you for that clarification.

Thank you both for some very interesting testimony. Questions
from the Subcommittee? Steve?

Questions, Answers and Comments

MR. STEINDEL: I have a very quick personal question for you
just to corroborate some of your information. When were you in my parents’
home?

[Laughter.]

MR. STEINDEL: The whole thing! I mean, yes – that was
dead-on about what you see.

MS. BRENNAN: If I can actually tell you two brief comments
about that.

One of them is that investigating health information in the
home opens a very, very private experience in people’s lives. I think they
would actually rather show you their checkbook than where they keep their
health data.

So actually I wanted to speak with a great deal of respect and
gratitude to the people who have let us into their houses to see these things.

Secondly, as all the researchers, I let my house be the first
study house. And as the team came to look at my house, my son stood in the
doorway and said, “That’s private – they’re not allowed in here to
see those things.” So even young children get the idea that there’s
something private about this health data.

DR. LUMPKIN: Simon?

DR. COHN: Yes, John.

DR. LUMPKIN: Thank you. I’d like to thank – is it Pat? —

MS. BRENNAN: Patti.

DR. COHN: Yes, Patti Brennan.

DR. LUMPKIN: — yes, for the presentation that you did. It was
really one of the clearest, non-jargony descriptions that I’ve seen of the
personal health dimension, not just the personal health record.

MS. BRENNAN: Thank you.

DR. LUMPKIN: And I just wanted to make a comment. First, I’d
like a copy of that picture of the diabetes case on top of the dog transport,
because there’s another analogy there, and that is that with the two
Rottweilers in there, that personal health dimension is protected.

[Laughter.]

DR. LUMPKIN: And I think that that’s important for us to
realize since some of the earlier communications, how important it is for
people to feel that not only is it someplace they know it is, it’s
understandable to them in ways and means that they understand, but also that
it’s protected.

So thank you so much for the presentation.

DR. COHN: Yes, and John, I think I should mention that you
really missed David Williams’s presentation. He gave I think what may get the
prize of the year for the most innovative use of PowerPoint, so if there’s some
way for us to send you that, I think that we all think that at the end of the
year we may reflect back and send him a letter, a tribute, for that, so –

DR. LUMPKIN: Unfortunately, it didn’t come across the Net very
well.

DR. COHN: Yes, I could imaging.

Now, John Paul has a question, and then Cynthia Baur, Mary Jo
and Kathleen Fyffe.

MR. HOUSTON: I’m first?

DR. COHN: Yes, John Paul, you’re first.

MR. HOUSTON: A question to Ms. Brennan. Have you thought about
it – has Aurora tried to integrate like medication administration
functionalities via the Web? I know there’s some products out that actually
will remind people through a device actually to take their medications.

MS. BRENNAN: Do you want to talk about that a little bit, what
we’re thinking about that?

MS. BURKE: Hi, I’m Laura Burke from Aurora Health Care. And
we’re right in the design phase right now, and what we’re still doing is going
in and talking to the patients about how likely would they want to be using
something like that. So we’re leaving our options open.

MS. BRENNAN: Right. We found that, like everyone else, coming
up with the medication list is more challenging than we thought. We were going
to try to take a direct feed off their clinical record, which should be the
accurate one, right? And then that overwhelmed patients.

We also found that the reminder issues are less informational,
more behavioral, so it may be, as you’re suggesting, that an Internet prompting
to a device – your refrigerator that beeps before you open it to make sure
you’ve taken your medication might be actually a better strategy for this. But
we don’t know how serious a problem of forgetting or lack of timing is.

MR. HOUSTON: sort of the second part of my question was,
because I know from reading your nurse’s issues, it sounds like it might not be
one of the big ones, but I heard this in other areas that this is being sort of
a key issue with in home care, is trying to make sure they appropriate
administer medications.

MS. BRENNAN: In our study of the home care to study how people
manage health information in the home, we found that there’s usually one
information manager who coordinates the household. And when we asked them what
kind of information management challenges they ran into, the medication related
ones tended to be more related to what Dave had mentioned, drug interactions
with other things, so they are not sure of, or they wonder about, or they
didn’t consider that there might be an interaction. So there is an alerting
problem that goes on there.

And remembering to reorder, not so much the logistics of
reordering but remembering before it’s 6 a.m. and you go to take your Haldol or
your anti-hypertensive and there’s none left. So it’s the sort of three days
before it’s due reminder.

MR. HOUSTON: One other question for Colonel Williams.

Is there going to be a desire or a push to require military
staff to use TRICARE Online? You said you had 220,000 people enrolled. I think
that’s a fairly – it’s what? Ten percent of the active duty force?

LT. COL. WILLIAMS: Oh, less than that. I don’t know if this is
on or not, but for active duty, we want to have it convenience for them, have
something out there that they wish to do it.

Right now, there is no requirement for them to use TRICARE
Online but there are requirements in the big Army for you to use AKO for
certain aspects. So I suspect once that behavior starts changing that the go to
place for information will be the Internet, and the go to place for your health
care information and interact will be the TRICARE Online.

Service portals now we’re working out so there’s a single
sign-on, that when you go to your AKO, Army Knowledge Online, for your
personnel information, and you pay, and other information, you hit TRICARE
Online and now you’re into your medical information.

DR. COHN: Okay. Cynthia?

MS. BAUR: Yes, I just have a quick question for David on the
operational vision slide. Above the line on the open side, I thought I saw on
the list a patient health record as part of the health resources. Was that
right?

LT. COL. WILLIAMS: Yes. It shouldn’t be on the open side; that
would be on the secure side.

MS. BAUR: Oh, okay.

LT. COL. WILLIAMS: But there’d be resources that are on the
open side. There’s 18 million pages of content we expose that you can look at
before logging in. We’re just trying to push that information out as easy as
possible.

MS. BAUR: So the educational resources and the calculators,
all that still is above the line? That’s right? That’s in the open side?

LT. COL. WILLIAMS: Yes, it is.

MS. BAUR: It’s just the patient health record is not.

LT. COL. WILLIAMS: Absolutely. And from there, over time,
we’ll pull it behind, but we’re trying to have some opportunities to pull
people in to start changing the behaviors.

MS. BAUR: Thank you.

DR. COHN: Okay. Mary Jo?

MS. DEERING: I want to thank you both. It was really very,
very helpful.

And I wanted to get back to an area that Patti addressed
squarely but I think Col. Williams, you began to hint at it, and it has to do
with really understanding the user’s needs and preferences and values and
priorities, and clearly that’s the essence of what you are doing.

But I wanted to first give Patti the opportunity to elaborate
about why – I mean, you clearly feel this is important; some people do.
But on the other hand, a lot of design does not begin with the actual patient’s
preferences. And I wonder if you could just elaborate a little bit on why you
are going to deeply into the area of the patient’s actual lives and uses of it
and how you think that is going to strengthen the end product.

And then I wanted to ask Colonel Williams, who was a user, to
what extent are you actually doing more than just a little bit of focus
testing? How are you getting, seeking, incorporating actual user’s preferences
into either specific functionality or the sequencing of what you’re doing.

MS. BRENNAN: I’d like to believe that my career was as
organized as Mary Jo just depicted. I have to tell you that we spent 10 years
taking computers, dropping them in people’s kitchens, saying, what do you
think? Oh, they look fine. And then thought, gee, we should have gone to see
what was going on before we put the computer in.

So it really truly was an after the fact thought that we better
go look at what people are doing without computers. And thanks from support
from the Intel Corporation and a tremendous partnership from the Dodge
Jefferson Healthier Communities Partnership, which is our community partner in
this project, we were able to get into 50 houses.

It took two to three hours per household. We would draw
pictures. We sent a team of two people and we took photographs. That did scare
some people, by the way – I got a couple of phone calls. “Someone was
in my mother’s house yesterday taking pictures. What were they there for?”

And so trying to explain it was for a health assessment didn’t
quite come through; it was unfamiliar.

I would say, Mary Jo, that the acceptability without impact of
the early consumer health informatics innovation is probably what’s pushing us
this hard, that is, that patients do better when you pay attention to them. And
if you give them tools, they will use them.

But we haven’t seen the health outcomes that we had hoped, and
we think part of it may be because there’s a bit of a mismatch. For example, as
Mr. Houston’s question about the reminders for medication – we perhaps
were giving people the wrong content at the wrong time in the wrong format.

And what we’ve learned, for example, is that keeping track of
things chronologically is incredibly important in these people’s lives. And the
more people in your house that are sick or have health problems, the more
complicated that is.

So, having some way to understand information over time is
critical. We never thought of that before. Understanding variability and
information needs over time – that is, a newly diagnosed patient really
doesn’t want to know everything about etiology; they want to know: When will
the pain go away? When can I walk? How soon can I shower? And when can I have
sex again? They don’t want to ask the doctor the last two.

So we know that people have things they want to know at
different points in time that they don’t want to hear from a health
professional.

So our process of understanding people across time is probably
what’s convinced us that we’d better keep listening to them across time.

Extracting those into efficient design recommendations is
really quite difficult. One of my doctoral students is doing her dissertation
work on this very issue: How do you effectively send a human factors team into
a home, figure out what’s going on, and bring design guidance out of it in a
way that doesn’t require us to visit 300 million households?

But what we do know is a couple of principles, iterative: Go to
a couple of households, talk to a couple of people, go to a few more
households, get feedback. So we get reaction.

Secondly, these concepts resonate with most people, and so
finding not so much people who agree with the concepts but people who can find
the flaws, that is, look for a deconstruction of them, has been helpful to us.

And the third point is that the technology is cheap but the
content is not. And so we really want to minimize the investment we have to
make in building new content to only build new content when it’s absolutely
necessary, which is why that much design is needed.

LT. COL. WILLIAMS: Our position here is that function
determines form. The requirements from the end users and the stakeholders are
what drives our systems.

And when we say “stakeholders,” it’s everyone from
the end user soldier up to their spouse and retirees. And the stakeholders also
are the people that own the business process.

How do we do that? And I’ll be happy to share our requirements
development document with the group here; I think it’s about a 90-page
document. But it’s using integrated product teams to pull in, constantly
working with them, refining the product, delivering products requirement-wise
as well as technical-wise in interim, small, deliverable, bite-size pieces so
we can get constant evaluation.

From an evaluation standpoint and feedback, we get a lot of it
and we try to answer it as quickly as we can. Our community is very vocal and
very involved in the process.

DR. COHN: Kathleen Fyffe?

MS. FYFFE: Yes, for Colonel Williams – could you elaborate
a little bit about the business partners, relationships that you have that were
noted on your schematic here? You have a bubble.

LT. COL. WILLIAMS: Yes, we have several business partners. For
example, the managed care that we contract out – TriWest, Humana and
HealthNet. We’ve divided this – we call “purchased care.” You’re
not seen within the military facility itself; you go out on TRICARE and get
treated there on the commercial side. So we have those business partners.

We also consider, and I haven’t to memory that slide and it
changes from time, VA, DOD as partners, as well as National Library of Medicine
and other government entities.

MS. FYFFE: One more question. The reservists who go on active
duty get care and military treatment facilities. Has there been a beginning of
a demand at all for those records to be electronic in order to take them to
their civilian physicians? Or how does that work, other than handed paper
information or fax information?

LT. COL. WILLIAMS: We’re still paper driven for that component
when they go from active duty out to their local, commercial side,
non-government. There’s no silver bullet right now for that, unfortunately.

DR. COHN: Gene?

MR. STEUERLE: Just more a comment than a question. The chart on
comparing of TOL and other no-show rates –

LT. COL. WILLIAMS: Yes.

MR. STEUERLE: — technically you could have in the way it’s
presented something that’s called an identification problem in statistics. That
is, if the people who get on the computer to re-book their appointments are
people who are pretty literate and the type of people who would reschedule
anyway. Then you may not be proving that you’ve actually reduced your no-show
rate.

There are statistical ways to do it. You need to have a way to
see whether the overall average drops. You see what I mean? They would be the
people who would be most likely to reschedule anyway and now they just sort
themselves and by sorting themselves by getting on the computer – I’m
presuming that’s probably not what happened entirely here, but some of that may
be there.

LT. COL. WILLIAMS: No, I agree, the jury is out for this.

MR. STEUERLE: I think there’s statistical ways of actually
getting at that issue, so –

LT. COL. WILLIAMS: Oh, well, I’d be very interested.

MR. STEUERLE: It’s mainly by comparing to what rate you might
have had beforehand versus afterwards. You may have such a small sample that
you don’t know.

But the question for you is more on a broader front, which is:
As you’ve gone towards this system, what has been the reaction of your
providers? I mean, had you increased, for instance – I presume you have
– the computerization of what they have to do, what they have to put on
line? Perhaps, I don’t know, the number of people who have to transcribe what
the doctor does to make sure that it’s compatible in the system.

And has there been a reaction here that’s been positive,
negative or otherwise? And what further steps along these lines – at what
point do you hit a line where you might hit a barrier here?

LT. COL. WILLIAMS: Well, right now, the areas that we’ve had
issues with are, for example, appointing. What we’ve done is gone down to the
clinic and exposed the way they do appointing, especially late on Fridays and
early on Monday, exposed to the world now for people to see. It required some
work at the clinic to readjust their schedule and have it exposed.

So we got initial push-back from the clinics specifically and
some of the providers in terms of exposing when they saw patients because that
was like the most guarded secret in the United States military, it appeared,
when providers saw patients. Now it is exposed. It just required some education
and that they still have control, but it is exposed.

It’s probably pretty transparent right now from a provider
standpoint that TRICARE Online is there except that they constructed a Web page
with their information favorite website. Pediatricians would have a Web page in
that clinic that they would build. We have wizards that are easy to do. And
they would put down their selected, trusted websites that they would know and
put out.

Other than that, right now in terms of the clinical information
they put in, that doesn’t roll over to the patient yet. All right, benefit for
the provider now is that they can log in on TRICARE Online anywhere in the
world and go into their electronic health record and see their patient
information on CHS-2 and CHS-1.

MR. STEUERLE: Is it everything in the personal health record?

LT. COL. WILLIAMS: Actually, the way it is set up right now,
the personal health record does not communicate to our system, so the only
person that can release that information is the owner of that personal health
record. So the provider would log on and see the super-set of information on
CHS-1 and CHS-2. They wouldn’t see the information that was put in manually by
the patient in the personal health record right now.

MR. STEUERLE: I’m sorry – excuse me; I actually misstated.
It doesn’t include everything in the actual medical record of the doctor?

LT. COL. WILLIAMS: It includes everything that they placed into
CHS-1, which is a legacy system right now. In the future, it will open up to
include the super-set of information placed in our EHR, the super-set of
information until we grow out of the paper over years.

DR. COHN: Okay, Steve?

MR. STEINDEL: Yes, I’d like both of you to comment on an
observation that I’m going to sort of make right now.

And what I’m struck by is that there appears to be a difference
in technical sophistication between the two populations you two are dealing
with. I think when we look at the news and we see people putting up personal
satellite links so they can get Internet connection from the deserts of Iraq
versus Rottweilers providing role-based authentification –

[Laughter.]

MR. STEINDEL: — to personal health records and –

MS. BRENNAN: It might be aroma-based!

[Laughter.]

MR. STEINDEL: — and one of the roles that this Workgroup is
supposed to do is make recommendations on what we should be saying about
personal health records. I’d like the two of you to comment on what we should
do with these diverse populations and both groups are probably going to be
using more and more of these.

LT. COL. WILLIAMS: We’re very interested on the issue because
we span the entire socioeconomic and age group of the population we serve.

That’s why we were interested with working with Conemaugh; it
was a Congressional effort. How do you change the behaviors of the seniors,
especially in a rural, underserved area? They go to their senior centers and
that’s where they hang out and that’s where they have extended facilities from
the hospitals now – you can get your lab done and that information.

So, understanding that they have poor communication, they don’t
have computers, we’re hoping that to touch those people at those centers
themselves and hopefully gain some information on how we can expand whatever we
collect from there from this particular study out to meet the other demand.

But in terms of age, it’s kind of difficult to predict who is
on the other side of the email. Some retirees, our elderly population, really
have wed themselves to the Internet. We still have some rather young soldiers
that come on that the Internet, they have not led themselves to, so –

Proportionally, the younger you are, the higher the probability
we see. But there are still the older population that have really brought
themselves to the Internet.

MS. BRENNAN: Our experience is that age is not as much of an
issue as motivation for a value added part of their lives. And so to the extent
that any technology, whether it’s a calendar hanging on the wall or a notebook
on top of the Rottweiler or a keyboard is used by a person is going to be
proportionate to some value that they’re getting back from that particular.

I urge you to keep in mind we’re talking about systems of
personal health records, not a single personal health record. I think we need
to abandon the idea that there will be one and we will all have that one and
we’ll know what it looks like and where it’s stored, but rather that we need to
think about, if you will – where’s Bill? – infrastructure in the
household and infrastructure in the person’s life.

In our experiences, some of the personal health information was
managed across several houses. Mom lived here, daughter next door, and the
granddaughter two doors down, and the daughter was the main manager for three
houses.

So if you think about information management that transcends
households, perhaps transcends family relationships.

I’m going to go back to Mr. Houston’s question earlier to make
a plea for your recommendations to include investment in the study of advanced
technologies as an age personal health information management. If we had RFID
on every single brochure that was handed out in every single clinic, the
patient wouldn’t need to worry about having a computer record. The brochure
itself could become actively part of the system.

If we had effective bar coding, and effective integrated bar
coding systems within our grocery stores and our refrigerators, we could
actually have nutritional management done without somebody sitting down and
typing it.

So I’m going to plead for personal health records to not be
words and numbers that may be in a computer but actually might be sensors and
environmental monitors and some of the integrated information that maybe will
come out of Dave’s group – I mean the other groups he worked with –
to bring us aware households that aid in health information management.

DR. COHN: I have a question, but Mary Jo, did you have a
question or comment?

MS. DEERING: Follow-up on that.

DR. COHN: A follow-up, sure, and then I have a question that’s
related.

MS. DEERING: That paints the picture of a whole new concept of
what represents information.

MS. BRENNAN: Yes.

MS. DEERING: The National Committee on Vital and Health
Statistics and the organizations, many of which are represented in this room
that are working usually on their own dime and nickel and overtime so hard on
the electronic health record and other data standards issue, are working within
a closed universe of what constitutes health information, your comments are
suggesting to me.

MS. BRENNAN: Yes.

MS. DEERING: And so it seems to me that there’s a challenge
before us. Those people who are investing so much of their personal and
professional time in trying to move this field forward, how can those efforts
be broadened or how can these other forms of information that may, some suspect
– I’m sure even the clinicians would say so – may be as important to
health care outcomes and improvement be included in data standards efforts, EHR
definitional efforts, interoperability efforts?

That’s a huge question and I’ll just sort of let it float out
there, but do you have any reaction to that?

MS. BRENNAN: A great appreciation for the fact that you
recognize this is what I’m saying. With all due respect – Stan Huff
sitting in the room makes me nervous with your work on terminology – these
are important and I’m not suggesting that structured languages are not
necessary. They’re incredibly necessary.

But in the life of a person who is not used to structured
interactions, not engaged in formal communication, but still needs to intersect
with that, the kind of bridge building that is going on between thinking about
formal terminologies in health care and consumer vocabularies needs to be
pushed back to think about other kinds of data besides terms and words –
images, movement, sound – and I realize this is a speculative request and
it will not be the low-hanging fruit, but it will help us to begin to think
about: How do we integrate over time and space the content that we want to know
about people? What doesn’t have to be put into a word? You know, we use words
because we can’t take pictures of everything.

But one last piece I would like to also ask is that we consider
just what does need to be formally represented and what doesn’t.

The personal health record does not need to be a very large bag
that everything gets stuffed into for life and we drag it behind us but rather
it might be thought as a distributed resource that some things are stored in a
secure coal box up in New York and the rest of it is with me in my little
pocket.

Think about personal health records as having a modular or
component concept that will allow us to think about what’s relevant to me. How
do I have with me at the time that I need it what I need to know about myself?
And then have a pathway back to the other things, as opposed to something that
I keep accumulating more and more of.

DR. COHN: Actually, I have a question. Then Mike Fitzmaurice is
going to follow up and I see Jeff is already raising his hand.

I think I’m sort of looking at all this sort of struggling with
the terminology of this stuff, and we described earlier today that there’s
fundamental taxonomy issues about, well, what is personal health record versus
personal health record system versus, well, what do we call this thing –
is it tethered, untethered, is it pieces of functionality? I mean, I don’t even
know how to describe all the pieces.

But listening to what you’re talking about also to some extent,
thinking a little bit about what Colonel Williams was sort of commenting about
about the use of your system, obviously in the world of TRICARE Online you have
a lot of functionality and then you have one little piece called personal
health record.

And yet everything else probably, if we were to think about it
broadly, is really personal health record system or personal health dimension
or something sort of like that.

I mean, once again I don’t want to get boggled in the
terminology. But I’m sort of sitting here struggling a little bit as I look at
the usage, and we may from others today and in the future, wondering what part
of this is the most valuable. And obviously some of it may relate to the
population you’re dealing with.

But in everything I’ve heard today, I sort of am going –
and David, help me with this – I’m sort of seeing in your numbers, and
you’re dealing with obviously a large population, appointment making seems to
be the most exciting thing that’s probably happening in your universe at this
point.

And, yes, I’ve got some people doing personal health records
but not many. And it’s growing, but it’s growing very slowly.

Now, obviously one can make the case for chronic disease
management, which, Patti, is an area that you’ve been really talking about,
that really having that depth of information really becomes the valuable piece.

But I guess as I’m listening to all this stuff and wondering
– you know, we tend to think about comprehensive functionality and I’m
actually wondering if this is really a bunch of pieces that are really sort of
assembled and disassembled at will for various business cases and in reality
personal health records may be late after some of these other things get
implemented.

I mean, David, can you help me with this one?

LT. COL. WILLIAMS: Well, I think you’ve hit the nail on the
head that I think we’re wed – I know we’re wed – to the personal
health record, as the VA is. Unfortunately, in some cases we run it like a
business. Return on investment for appointing – we can go through all the
reasons that we do this – but the return on investment for appointing was
really substantial.

From that appointing, we were able to hang off clinical
applications that we felt clearly was needed, but that gave us the business
case to put out an enterprise wide portal. Once the enterprise wide portal is
out there, there were other applications and other systems could leverage that
system very well.

And we talked about the providers getting access to the CHS-2
and CHS-1 clinical information.

It was just the strategy we had to get the system up, running,
and from that, the whole concept of the TRICARE Online is now that we have a
common portal; we can put in applications.

At that point, the beneficiaries and then the stakeholders are
pushing for certain applications. And one of them is the personal health
record. And that’s, usually as I said, in the top four that requested that one,
one that communicates to the electronic health record.

MS. BRENNAN: The single most important recording tool that our
respondents in the home health study wanted was just a list of where they were
last and for the last five years – which doctors did they see.

To the extent that the personal health record is viewed as a
derivative of a clinical or electronic patient record, its value is going to be
driven by the value of information in health care which I submit to you, my
discipline has yet to come forward and show is really all as valuable as we
believe it is.

So we want all this. We take long histories. We take them
repeatedly to patients. And then we ignore them and go on and do stuff. We do
have to think about what is the value of information in health care?

But, remember that the personal health record has value in
people’s lives beyond the industry of health care. So, Simon, I think the
answer to your question in part is going to come from the perspective of the
stakeholder you’re asking.

I like your modular approach. I want the Quicken for health
care so that if I’m not worried annuities this year, I don’t worry about the
annuity part of the program. But if I am worried about getting through a
pregnancy or if I’m trying to get myself onto a weight management scheme, then
I get that part of the program and I spend time with it.

It will not provide us with a lifelong clinical history that
our genomicists want us to be able to provide to them or that our clinical docs
would like us to be able in an integrated way. But it might actually get me
through this week’s health concern.

DR. COHN: Thank you. Mike Fitzmaurice?

DR. FITZMAURICE: I picked up on your chart, too, on the no-show
rate because if it were true – the question I was going to ask you is: Is
this part of the business case or provider wanting to adopt a scheduling as
part of the electronic health record that a provider’s no-show rate would go
down?

And I found the same, that as you look at this early, it’s
talking about just two different groups during the same time period. It doesn’t
talk about it before and after.

Do you have a sense that there is a before and after and that
the no-show rate overall has gone down?

LT. COL. WILLIAMS: The no-show rate historically for the MHS,
and I don’t have the figures in front of me but I’ll be happy to present them,
it was about 7.5 percent. We have such a small end on the no-show rate now.
We’re not affecting the overall MHS rate enterprise-wide. But it historically
runs about 7.5 percent.

DR. FITZMAURICE: Okay. And the second question to Patti. In
looking at all these households, you probably learned from one to the other
that at the end you probably could say, you know, per households, if they had
just one single improvement, that would make the biggest difference in their
ability to store and to retrieve information.

It might be a big orange grocery sack, might be a big orange
box, might be just sheets of paper or stickies beside the scale, beside the
refrigerator.

What is your sense of, if you could go back to these
households, what maybe one or two things would you tell them that would improve
their ability to store and retrieve information? Or does what they have work
for them and they would have to change an awful lot to improve?

MS. BRENNAN: Is there a chance you’re reviewing my paper right
now?

[Laughter.]

MS. BRENNAN: We have a paper under review that describes the
storage strategies used in the households, that people store information based
on their sense of how secure and how sensitive it is, their perceived value and
need for it, and how quickly they will get it.

So some things are stored in the wallet – I may need it
momentarily, just in time. Some things are stored in the basement – just
because I don’t know what to do with it so I stuck down the basement. Some
things are stored just in case I keep my kids’ immunization records although I
know I can call the doc and get them but it’s in case I need them, I got them
right there.

So people do develop theses storage strategies. And what I
would do is not actually tell them which one to use, but make them more aware
of the ones they are using and determine if they’re as effective for them as
they need them to be.

My goal is to get technology involved in this in a very
different way, and so I’m very excited about a project that I heard of that’s
going on in the University of Washington – Keeping Things Found Group. And
it’s a bag remembers what’s in it and what’s been taken out of it.

And essentially imagine RFID and all the objectives in your bag
and as you put them in or take them out, the bag keeps its own inventory.

So that idea, I think, may be coming along as a good storage
solution for us.

DR. COHN: We all may need that as we get a little older.

MS. BRENNAN: Yes, yes!

DR. COHN: I guess I’ll speak for myself on that one.

Well, listen, I want to thank you.

MS. BRENNAN: Jeff –

DR. COHN: Oh, Jeff – I’m sorry, please. Final question.

MR. BLAIR: Not a problem. One of the things that I always
appreciate is when I start to learn something new and the stereotypes that I’ve
held have shattered. I used to call them prejudices and biases, but my wife
told me it’s politically incorrect to refer to them as prejudices and biases
and I should just call them stereotype.

So among them are: Who are going to be the early adopters of
personal health records? And my stereotype tended to be that it was going to be
the folks that were literate, on information systems, and well-educated, and
either mothers keeping the records for their children or their grandchildren or
– in any event, and I don’t know to the degree that the rest of the
Workgroup shares my stereotype but the testimony before lunch, and Patti, your
testimony, I think have caused me to consider that maybe the early adopters and
maybe the most frequent users of personal health records might turn out to be a
different population.

Before lunch, it was articulated that folks that either had
chronic conditions or were elderly or retired were using personal health
records to manage their care. And you pointed out that the population might
include that but also might include persons with various forms of disability.
And of course, the population that’s elderly or chronic conditions and the
persons that have disabilities may not be mutually exclusive. That begins to
have a large degree of overlap.

And so if I tried to blend what I’ve learned from that
testimony and yours, it sounds to me – I don’t want to give up, I don’t
want to give up all of my stereotypes; I want to hold on to one of them, and
that is how important it is for interoperability of data, okay?

However, I think what you’ve said is that we need to expand our
mindset as we look at personal health records and realize that the
interoperability may need to extent to mobile devices and PDAs and Smart Cards
and devices –

MS. BRENNAN: Smart Soup Cans?

MR. BLAIR: — yes, and bar codes and all of these areas, and
they may be critical to the adoption and value of these to portions of our
population that are very eager to use these.

Now, one other piece that we didn’t hear but is also the folks
that might be very poor and not computer literate and maybe even afraid of this
technology, and maybe we have to look into how do we extend the benefits of
this technology to that group as well?

Did I hear you?

MS. BRENNAN: Yes. May I comment on that for a minute, Simon?
Thank you.

Yes, I like the way you heard what I thought I was saying. I
want to add one other stakeholder group to your list, and that is what we might
call the “information chauffeur.” In two-thirds of our households,
there was a person whose family job it was to manage the household’s health
information.

So as we build websites or personal health records thinking
that the sick person is going to take care of this himself, we need to remember
it might be a spouse or a daughter or a family friend who’s actually the real
user of the personal health record, not the person who it’s reflecting, but the
person who’s actually using. Thank you.

DR. COHN: Okay. Well, with that, I want to thank you both very
much for a very interesting session. I’m going to give everybody about a
10-minute break, Mary Jo? Yes, let’s give everybody a 10-minute stretch break
and we’ll come back in 10 minutes and get started.

[Break begins at 2:33 p.m. and meeting resumes at 2;46 p.m.]

DR. COHN: Okay, would everyone please be seated? We’re going
to get started here in just a minute.

Dr. Wiesenthal, are you on the line?

DR. WIESENTHAL: I am.

DR. COHN: Okay, good. We’re just getting everybody seated here.

DR. WIESENTHAL: Okay. By the way, Simon, I did review that
other document, so you could see, when you have

a chance, some suggestions I added.

DR. COHN: Okay, well, we’ll talk about that. I just want to
remind everybody that we are live on the Internet.

First of all, I just want to remind everyone, and sort of once
again publicly disclose. Now, first of all, Andy, much to my surprise, I’m
chairing this session. Dr. Lumpkin is calling in, but had an injury while
skiing over the holidays.

DR. WIESENTHAL: He did that before?

DR. COHN: Sorry, Dr. Wiesenthal?

DR. WIESENTHAL: Maybe I’m remembering something else.

DR. COHN: Okay. Well, anyway, I believe he is on the line.

DR. WIESENTHAL: I think that’s only the first time. Oh, okay
– I was going to admonish him to wear a helmet or some other form of
bracing device but –

DR. LUMPKIN: After my years in the emergency department, I do
wear a helmet that didn’t help my back, though.

DR. WIESENTHAL: Oh, I’m sorry.

DR. COHN: But anyway, I just want to publicly disclose both the
first presenter and I work for Kaiser Permanente and are colleagues, and so I
just wanted to make sure everybody realizes that.

Now, the panel has evolved somewhat, and Dr. Wiesenthal is
actually going to be the first presenter. David Kibbe, I think, is not
available for this panel. And then Catherine Liberlies I believe is ill today
and will be back tomorrow morning. So we have Dr. Wiesenthal beginning, James
Magiera as our second presenter, from the VA, and finally Peter Basch from
MedStar.

So, with that, Andy, we actually have your presentation both in
paper form and up on the screen.

DR. WIESENTHAL: And I have it on my screen.

DR. COHN: Well, hey then, we’re all set.

DR. WIESENTHAL: We’re all set.

DR. COHN: Please.

DR. WIESENTHAL: So I’m not sure who is managing the slides, but
if they would proceed to the next one, that would be great.

DR. COHN: Okay, so you’d like to go to the –

DR. WIESENTHAL: Yes. And I can’t drive it from here; you were
driving it from there. But I’m seeing what you’re seeing.

AGENDA ITEM: Panel 3 – Provider-Based
Barriers and Benefits — Presentation – DR. ANDREW M.
WIESENTHAL

DR. WIESENTHAL: So I wanted to spend a couple of minutes
orienting everyone to what Kaiser Permanente is because I found that it
actually matters and not everybody is operating from the same level of
understanding, and then talk about what our project, which we call KP
HealthConnect, is and then give some answers to the questions that I was posed
that I think will help inform the discussion.

So KP is a bi-directionally exclusive partnership of the Kaiser
Foundation Health Plan and Hospitals and the Permanente Medical Groups. Next
slide, please.

It’s got 8.3 million members, most of them in California, but
certainly plenty elsewhere. My region, before I joined the national umbrella
organization for the Permanente Medical Groups, was Colorado and currently
there, for example, it’s got 400,000 members in Colorado.

And you see the numbers, large numbers, of employees and
physicians. Those physicians are all members of Permanente Medical Groups, and
what that means is that they only care for Kaiser members and Kaiser members
only go see them.

We own and operate 30 hospitals primarily in California; there
is one each in Portland, Oregon, and Honolulu, Hawaii. We also have
arrangements with community hospitals in all of the other places where we have
operations.

As you see, a large number of medical offices – we do
business across the country in various places, and our annual operating revenue
is on the order of $27 billion. Next slide, please.

The Health and Hospitals organization is a single, nation,
not-for-profit entity with operations in those nine states and the District of
Columbia. It develops our insurance products, markets, prices, enrolls members.

By and large, it owns and operates the facilities that we own
and operate with some exceptions and employs all those hundreds of thousands of
people with the exception of the physicians and in most cases physician
extenders like PAs and nurse practitioners. Next slide, please.

The Medical Groups are separate companies. They are
self-governing and they’re multi-specialty group practices. The smallest of
them is on the order of 200 some-odd doctors that’s in our Ohio region, the
Ohio Permanente Medical Group, and the largest in Northern California, the
original Permanente Medical Group. And essentially these comprise physicians
from all medical specialties and sub-specialties. Next slide, please.

So, what are we doing? And in our context, what’s a personal
health record, or PHR?

We are in the middle, really, of a multi-year deployment of an
electronic health record system so that includes ambulatory health records and
where we can control it, where we own and operate the hospital, inpatient
health record systems and what we call a “practice management
system,” and that includes scheduling, registration, ADT in the hospital,
billing, claims, and also a significant Web portal, which I’ll get to in a
minute because that’s the most operative part that relates to what people think
of as a personal health record.

We already have a Web portal. For those of you who are Kaiser
Permanente members I hope know this; if none of you are, you can still access
the public parts of the portal by going to kaiserpermanente.org, one word, and
see some of the things that our members can do, but not all of them.

What we will do put more features and functions into that
existing Web portal so that the capabilities that we plan to deploy in the next
year to 18 months once we have built in the electronic health system in a
region will include access on the part of members to the medical problem list,
all laboratory results except where prohibited by law or by other constraints,
their drug profiles, immunization records, their care plans and physician
instructions.

And the members will be able to create addenda to those records
which will become part of their charts. They will also be able to do secure
messaging back and forth between themselves and any members of their care team.

Currently, they can already schedule appointments, refill
prescriptions, request advice from nurses and from their physician, access a
very large health encyclopedia, and do some other business kinds of
transactions. And over the next several years, as I said, members will gain a
lot of access to those kinds of things that I talked about before as regions
deploy the ambulatory record.

In addition, there are some Health Plan administrative
functions that members will also be able to engage in, and these include things
like looking at their benefits, even changing their benefit structure if that’s
possible within the constraints of what their employer or payer provide;
following various expenditures; if they happen to have a plan that calls for
deductibles, they’ll be able to track how much of the deductible they have used
up and so on.

Ordinarily, I don’t think people would consider these kinds of
capabilities part of a personal health record, but they certainly are important
and make certain kinds of transactions convenient for our members.

I didn’t quite understand in the questions what the meaning of
the word “tethered” was, but I’m going to make an assumption in that
it means it’s attached and it doesn’t move with the person whose personal
health record it is. So our personal health record will be tethered. It’s part
and parcel of the entire electronic health record system.

We don’t view it as a separate entity. It just presents data to
the member and presents functions to our members in a way that is useful to
them across the Web. Not really a free-standing entity.

And we will certainly make it possible for members to move
their health data from our system to other systems via paper, and that’s going
to be the way of the world for the next while or electronically as
interoperability becomes possible.

But there is no personal health record or PHR that can be just
taken by the person anywhere they want to take it. Next slide, please.

So, some caveats. It’s important for me to say that at our
stage of development and deployment, there aren’t any barriers to the adoption
of a personal health record within Kaiser Permanente.

So what I’m going to say really represents some speculation on
the state of affairs outside of a system like ours.

And the other thing that I want to emphasize is that from our
perspective, the personal health record will never be a substitute for true
integration of a delivery system. And I had the feeling that a lot of people
have that hope for it, but these are the reasons why I think that won’t be
true.

There’ll be some people who will take the time and make the
effort that’s required to aggregate all of their health information from all
their care givers and enter into a personal health record or see to it that
it’s delivered to a personal health record, but most people will not do that.

If all care givers in a location do not participate in whatever
we have been calling those local health information collaboratives that would
be necessary to feed a personal health record, then nobody – none of the
care givers nor the patients themselves – will have complete confidence
that the personal health record has everything that it needs to have in order
for somebody to make adequate medical decisions based on the information inside
of it.

And even if they do participate broadly, there’s a lot of
maintenance and use of personal health record data that has to happen in order
for it to be optimally useful. Doctors and nurses and other care givers need to
use them to improve care, to gain access to information at the point of care so
that they will realize that this person that’s sitting in front of them, even
though they’re sitting in front of them because they may have an upper
respiratory infection, in fact hasn’t had a Pap smear or needs an influenza
immunization and should have those things done, even though that’s not the
purpose, strictly speaking, of the visit day.

And so encouragement to do these kind of health care
improvements will be necessary, and we think that that should come under the
rubric of a pay-for-performance set of incentives, and the like of which is
already being considered by CMS. Next slide, please.

So, again, my speculation about what the world outside of
Kaiser Permanente is facing – there is, first of all, a lot of information
that could populate a personal health record that’s not digitized; problem are
in paper – patient instructions and plans. The results of in-office
testing are often just notations or paper results forms and not in any way
digitized. And all of these things are vital elements to a personal health
record.

There isn’t yet a good infrastructure that will allow for the
routine maintenance of information that physicians want to contribute, and I’ve
got a couple of questions here, but the most important thing is that you as a
doctor will need to make sure that whatever you’re putting into an individual’s
PHR is up to date, and as you make changes to that person’s care, whether
you’ve changed their medicine, got results of a new test, have performed some
sort of preventive intervention, or something, you have to put that information
there.

And I asked a question here, and this to me I think will be
important and one that’s on the minds of a lot of physicians, is if they don’t
maintain a PHR, is there liability associated with that for them? And that
happens at both ends of the treatment spectrum, for the one who created the
data but didn’t put it in and some decision was made by another doctor, does
that redound to them?

And if they’re a doctor relying on the accuracy of a personal
health record and it turns out it was missing something very important and a
decision they made turned out to harm a patient, they would have made
differently had they known something different, that’s important as well.

So, there need to be rules about what goes into a personal
health record, what kinds of form that information takes, who should have
access to it, and so on. And the infrastructure to do all these things is
really not there yet.

Is there an economic basis for all of this on the part of
fee-for-service physicians? It’s very clear what our economic incentives are to
us. Our incentives are pretty well aligned in making this go. But contributing
data to a personal health record and improving the quality of care using the
information in a personal health record should again be part of a
pay-for-performance incentive policy that globally affects all practitioners
across the country.

I think if these barriers get addressed, doctors will see that
personal health records provide value to their patients and to themselves. I
believe that doctors believe that quality of care improves if a full set of
information is available to everybody involved when care is being rendered.

And I think that if proper reimbursement for all these
activities is in place that that will insure that doctors and health care
delivery systems like us allocate the appropriate time and resources to
maintaining their end of the personal health record. Next slide, please.

Well, how do you address the barriers?

Digitization is one important one that I mentioned. Short-term
solutions include taking what doctors have from their practice management
systems and incorporating that data routinely into personal health records and
that data includes things like diagnoses that they bill for, procedures that
they bill for, things that they order, and so on.

But the systems that doctors use for preparing these bills for
practice management are often proprietary so we’re going to have to encourage
the vendors of these systems to export data in vocabularies that are
standardized. Simon and many of you know about these standards much better than
I do.

The long-term solution is of course the widespread adoption of
an electronic health record, not a single one but a series of electronic health
records that can routinely feed standardized information into personal health
records.

And physicians need to assume responsibility for maintaining
their end of the bargain, for making sure that whatever information they have
is uploaded into their patient’s personal health records and that it is
accurate.

But we can’t hold them accountable for doing that until the
software tools for that kind of export of data are routinely available to them.

To the second bullet, our large bullet on this slide, which is
that doctors for the most part still practice in small settings, as we all
know, and so many if not most of them can’t afford to build this kind of
infrastructure by themselves. They can’t afford it, they don’t know how.

And so various reimbursement schemes have to include some
increments for system buffer acquisition maintenance. And again, targeting the
physicians who demonstrate that they will improve quality, using these systems.

It’s probable that hospitals and other large providers or
conveners will need to host the personal health record databases within local
health information infrastructures. Please excuse me for all the acronyms here,
but I think they’re familiar to most of you.

And finally, again, a directed at paying for improved quality,
we got to reimburse folks for doing the work here and making sure that it
produces the kinds of patient outcomes that we want it to address.

I think that’s it.

So, again – I’m sorry – what are the benefits?
Excuse me.

Patients will have access to information they need to take
care of themselves. One of the physicians that I know well inside of the
Permanente Medical Groups who has large responsibility patient communication
and education liked to frame it this way: If you have a patient who is a very,
very frequent visitor – let’s say they come to see you once a week –
they might spend about 500 or 600 minutes with you in the course of the year.
That would be an extraordinarily highly utilizing patient.

And it probably means that they have lots of chronic problems
that need to be cared for.

So they spend those 10 hours with you and the rest of the year,
they’re on their own; they’re with themselves and their family. So most care
isn’t delivered by doctors and nurses and in care settings; it’s delivered by
the patients and their families. And they need access to information and
guidance to do that care for themselves. And that’s one of the important
benefits of a personal health record.

Physicians and staff will be out of the loop of just simply
being information brokers so that a lab result can go straight to the person
who’s most interested in it besides the doctor who ordered it and that’s the
patient. And if it’s normal, then the patients can interpret that for
themselves and there can be help to doing that in the context of the website
where the personal health record is housed.

And if they have questions, then they can direct that to their
physician so that the personal health record with decision support embedded in
it will help patients use their doctors and nurses wisely, so they’ll get in
touch with them when those kinds of contacts can add value to the patient.

So now they know that they have peak flow and they know if
they’re an asthmatic what range it’s supposed to be in and they know, based on
an algorithm that’s in place on their personal health record what they’re
supposed to do if it falls below that range and they know what they’re supposed
to if those interventions don’t work for them and when to contact their doctor.

And that’s a much more efficient use of health care resources
that a personal health record can contribute to. And the kind of quality
improvement that I’ve been referring to on various points during this talk.

And I will stop and see if, Simon, now or if we’re to wait till
others on the panel have had a chance.

DR. COHN: Yes, Andy, if it’s okay with you, what we’ll do is
let the other two presenters present and then we can have questions. Does that
work with your schedule?

DR. WIESENTHAL: Absolutely.

DR. COHN: I think our next presenter is James Magiera from the
Veterans Administration.

DR. COHN: Andy, by the way, if you’re on the website, you can
actually see this presentation.

DR. WIESENTHAL: Yes, I’m hoping I can see it; I’m still seeing
mine – there it goes!

DR. COHN: Okay, great.

AGENDA ITEM: Presentation – JAMES
MAGEIRA

MR. MAGIERA: I want to introduce myself. I’m

James Mageira and I work at the VA hospital and I’m also a
teacher at the VA hospital. But right off the top, I want to let you know that
that is not my primary job. It’s one of about six jobs.

I am technically a horticulturist and that’s what I do; it’s a
living at the VA hospital as I teach how to grow plants to veterans in a
therapeutic way.

This program that you’re about to see here didn’t even exist at
the VA hospital. Bob, who’s sitting next to me, and two other veterans that
you’re going to see in this little slide show that we have, we created this.
There was no such thing as a veterans’ computer lab in 4 Building, and 4
Building is our nursing home building.

I’m going to give you a little history of this.

Our first computer that we ever had was donated to us. It was a
Commodore 64. I don’t know if anyone’s familiar with that – very difficult
to use, wasn’t it? Big floppies and everything like this. But we had it down in
our greenhouse.

And I got two veterans who were interested in trying to figure
this thing out. And so they started to play around it, they learned about it,
and the more we learned about it, the more the word got out that we had a
computer down at the greenhouse.

Within about two months, we had 15, 20, 25 veterans in a simple
little class that we had going on there, and all they were doing is putting in
seed list, my plant list, where we were going to deliver them to, how much
fertilizer do I have left, and I think they finally got to the point where they
could do “Jingle Bells” on it.

But right there and then I realized – boy, there’s an
awful lot of interest in computers, in technology, from our veterans.

And the next step was: How can we bring this to more veterans?
And I’m really lucky that I have great director at our hospital. He is retired,
and his name was Bill Conti. And he and also our chief of staff, Dr. Binus,
went out on a limb with me.

I told them that if we could just get a small little room and
see if we could get some computers donated to us that we could start a really
nice program and have veterans come in and learn about computers.

Well, they said, go ahead and give it a try.

Well, we’ve grown from one computer, two computers, to now we
have 50 computers. All of them are on line. By the way, before I go any
further, none of this is a cost to the VA hospital, every computer that you see
here, every computer that we’ve received, every computer that we’ve given out
to veterans – and we’ve given out over 350 computers.

And the Internet access – the paper, the pencils, the
tables, everything you see, even the drawing that you see there that I put on
there, I did that with leftover paint kits that were donated to the veterans.

So there’s no cost – none, except for the room, the
lights, the heat, and for me. And I’m only really basically part-time because I
still have all these other projects that I have to do.

So when you go in and see our computer lab right here, this is
one of our entrances to it, and what you see right here is a kiosk that they
were going to throw away. This kiosk cost, if I remember right, was well over
$10,000. They brought it in, put it in our main entrance – they kept
having trouble with it, blamed it for everything; we’ve got a virus in the
hospital, it came from the kiosk. Didn’t want to use it anymore. Sat in a room,
no one was touching it. I asked if we could have it. Finally got to the point,
yes, you can have it.

We brought it down to the computer lab. People like Bob, who is
sitting next to me, and the other two veterans that you’re going to see in a
few minutes, tore it apart, took a look at it, and we got it running. And as
you can see, it has the myhealthevet page on there; you can access it 24 hours
a day, seven days a week.

We also have all kinds of health information that’s on that.
There’s information about hospital tunnels, how to find your way around the
hospital. Anything that anyone wants, we can place on there. Bob put a nice
little picture on the front of it when it goes into a screensaver and has
sounds of the beach going on and birds flying by. What we do is we’re trying to
pull people in.

A veteran walks by, they hear it; we want them to come into our
lab. Somebody who’s afraid of computers, we want them in there because once we
get them to sit down and to get to try to use a computer, they see how easy it
really is.

It’s all about simplicity. I listened to all these
presentations and everything and it basically comes down to, if someone’s going
to use this, it has to be simple. It is simple. Bob, go to the next page. I
just want to show you a couple other things.

This is our lab. This is a part of our lab, and if you notice
all the paintings and drawings we have on the wall, the reason I do that is
because we want people to look in there. A lot of the buildings in the VA
hospital are very boring – plain white, plain, you know, awful color.

So what I do is when you walk by the main tunnel and you see
the veterans’ computer lab, you’re going to see all kinds of color. You see the
spring coming, the fall and the winter; you see some handprints. You see
handprints on the wall right there? Those are student volunteers who have
helped me. They get to put their handprints on there to teach our veterans how
to use computers, how to get on myhealthevet, and you’ll see that as we go
down.

So we make it a comfortable place, an easy place to come in.

And not only do we have it for our veterans, we have it for our
personnel. Anyone in our hospital who wants to come to our classes can come and
sit along with our veterans. So now you have employees and veterans sitting
side by side, going through classes, talking to one another. It’s just
incredible.

We also invite family members to come in with their veterans if
they want to and sit with them as we’re going through some of our training
classes. And we teach from real basic – I mean, if you don’t know how to
use a mouse, we’ll teach you how to use it. Completely all the way to writing
and doing Web pages. HTML – we just don’t tell you how to clip and drop
stuff on; we teach you how to write it.

So veterans are capable of doing this stuff, no question about
it. And Bob, go to the next.

Here’s a couple of more, some more of our computers. This
classroom right here has 13 computers that you see here. We also have on the
other side that’s set up for wheelchairs, so wheelchairs can come in and also
sit in on our classes.

And again, we do classes again from basic to Excel, Microsoft
Word, PowerPoint. Veterans can do this. And wait till you see some of the
veterans. I only have a few pictures of some of the veterans who can do this.

So they can handle this – absolutely. I’ve been working in
the VA hospital for 35 years. I came there right out of the service and
dedicated my time to our veterans.

And I’ve seen a lot of good programs disappear and I saw a lot
of good programs come, and this is one of them. This is a great program,
myhealthevet and the computer lab. Bob, go to the next one.

This is Barry, this is one of the other gentlemen that work
with me and helped built this whole program. Barry is a wheelchair-bound
veteran. He lives in the nursing home, right upstairs. He comes down every
single day and works with us on the computers, gives classes. He’s on one of
the pages on myhealthevet; he’s on “Forms.” He was looking up a form
for a veteran.

So if a veteran can’t do it, there are other veterans who can
help them do it. This is veterans helping veterans. How much better can that
be?

And you can see there’s Bob in the background and he’s working
on computers. We literally take the computers apart, rebuild them – they
can do this. They do the health

care, because if they can rebuild computers, they can learn
Excel, they can learn Access, they can do all this stuff. They certainly can do
your own health care.

Here are a bunch of veterans, different age groups.

I have veterans who come in – they’re from 90 years to
young veterans who are coming in from Iraq and Iran. They’re all working
together.

I have also computers for those who are visually impaired.
Again, remember, this is stuff that’s not given to us by the VA. This is stuff
that – are they any private industry people here? I wish there were,
because I want to thank them, because everything we get is from private
industries. Private hospitals who are getting rid of some of their old
computers, we take them and we rebuild them and bring them into our veterans’
computer lab.

We have veterans’ groups who donate money to us, or computers
or like the Internet access that we have right now; that all comes through
donations. We get zero from the VA.

One of the things we did was really neat, is we were able to
get this sign made. It was three feet by 15 feet long and we used it on the
debut of myhealthevet and we put it across the road.

And we got so much publicity from that sign – people
driving by, going to work, that one

day a reporter, this woman that you see there, stopped by and
asked if we’d be willing to do a television show, cable show, on myhealthevet.

And the young girl who’s sitting next to me right there is only
13 years old and she was a summer help student and I asked her if she would
want to come with me and be on TV and help talk about myhealthevet. And the two
of us spent about 35 minutes talking about myhealthevet on television.

So students are a great educational tool. They are so good at
computers and they do it in a way that’s easy and understandable for our
veterans to learn.

There are some of my students that came in for the summer and
helped me. This is at a library and we did a myhealthevet at a library and
talked about how it would benefit our veterans. And the group that was there
were mostly veterans’ organizations and veterans themselves.

This is something new. We wanted to take this program beyond
just the VA hospital. We wanted to take this program on the road. And this van
is a government van, so this tells you right now that this was a difficult
thing to do. This van – I had to start with the director of the hospital,
or the assistant director of the hospital, through GSA and 40 other people in
between.

Then I had to go through it all over again when I wanted to try
to put some writing on the van. That was another issue. The writing that’s on
there that says “myhealthevet” and the stickers and so on are all
donated. All that money was donated to put the signs and so on on the van.

We’ve been taking that on the road to different DAVs and
American Legions and all the different veterans’ groups to let them know about
the myhealthevet.

I just had a meeting with Home-Based Care at our hospital and I
was asking if I could take my van on the road with a clinician and try to help
those veterans who do have computers and teach them how to get to myhealthevet
and to also teach them how to maneuver around on it and if they had any
questions, and also teach that clinician how to take over eventually so that I
would be able to move on to another area.

What I’m finding when I do do a lot of the training is that the
simpler, the better. And it doesn’t seem to matter who I talk to about it. If
you just make it simple, everyone can understand it. And that’s what I do in
all our classes. All our classes are very, very simple – simple words,
simple language, and I’ve found that that’s worked out the best.

The other thing that I’m finding out is a lot of family members
want to come to the classes, because, like I heard earlier, a lot of family
members will be doing a lot of myhealthevet and a lot of the care for their
veterans and myhealthevet is designed to do that; it’s allowed family members
to be able to help their veterans get on that and get the information and also
to be able to input information on the self-entered information section. Go to
the next one.

What I also wanted to do at VA is I wanted to have an
information, registration and help desk right in our main entrance of our
hospital. And this is our brand new ambulance entrance for our hospital. This
took IRM involvement to get into this, to get us aligned.

So this is the only computer system that runs through the
hospital network system. Everything else runs through our own. We’re totally
separate.

All you can do is get on myhealthevet on this. But as you can
see, some of the teachers are students. I get as many students involved as
possible. Veterans seem to like to see a young person sitting next to them,
teaching them how to use it and they just seem to be able to teach so well.

And I encourage students at high schools, if they get a chance,
to do that, to help a veteran get on a computer, learn how to use computers.
But this took another – from the director, from the chief of staff, and so
on, just to get this into there.

So it takes more than just a good idea. My ideas don’t come to
light unless I get help. I have nothing. I have nothing there. It takes a
director. It takes those people who are willing to go out on a limb, take a
chance, have some knowledge of what’s going to happen in the future –
where were we going? It is going, everything on the Internet.

I mean, I’m not technically a teacher. Again, I knew nothing
about computers. I learned by just going on computers and going through page by
page, learning from people like Bob next to me how to fix the computer. And now
I think we have one of the best programs in the VA.

This – I think you’ll see on our next picture, Bob? –
is one of the veterans who came down to me and he said to me, “Why can’t I
go on myhealthevet on the rest of the computers?” Tom – that’s his
name – can’t use his hands.

And I says I don’t know why you can’t.” He says, “I
want to do what everyone else does. I want to be able to do that.” We
found a veterans’ group to purchase that device that you see there, and Tom,
that was over $2,000 at the time – didn’t even ask, what a cost? He just
said, “If you can find it, get it; we’ll provide it for Tom.”

Tom comes down every single day. Tom is 85 years old. He’s as
good as you and I are on a computer. He’s tremendous. He goes on there and he
can move around better than me, and he knows everything about it. So don’t tell
me age, you’re too old, that you’re not going to be able to learn it, because
like I said, I have people on there who are 90 years old.

It takes the effort. Tom can come in every day if he wants to.
It takes to repeat it over and over. But they do get it and they do understand
it, and once they do, they don’t want to get off it.

Tom – they have to bring his medication down to Tom. He
doesn’t want to leave! They call him to come up and he says, “Well, I’m on
the computer.” So they come down and give him his medication.

Any time they’re looking for someone, the first place they call
is the veterans’ computer lab – let’s see if he’s down there first,
because once they’re in there, nobody wants to leave.

Then there’s our train. On the road with myhealthevet. Get
aboard! This train is in our greenhouse. Our computer lab is connected to our
greenhouse.

And what I do is I take the train on the road and I set it up
and it probably takes a space at the tables we’re sitting here to set it all up
because it’s large; it’s an LGB – I don’t know if you’re familiar with
that – but it’s a really large train.

And with the myhealthevet sign on it, people come around and
they stop and they start asking me questions about it, and we begin to tell
them about it.

We’ve taken this even to malls where different companies will
allow us to get Internet access and we’ll bring up the myhealthevet page and
actually show what the page looks like and what you can do with it.

Most of the teaching and training that I do with it, I go right
on the Web page live so that everyone can see exactly what it looks like, and
they find that it’s much easier to actually see what’s actually there.

This is our brand new addition. This is our satellite computer
lab. This lab we created for veterans after hours so that when we close at
3:30, 4 o’clock, veterans can come down to this lab, open it up and get on line
and access myhealthevet or wherever they would like to go on the computer.

And they can use that computer till 10, 11, 12 o’clock at
night, seven days a week. So if I’m not in, it’s a holiday, veterans are still
using our computers and still have access to myhealthevet.

You know, I’ve just seen so many great ideas on myhealthevet
and heard so many great stories about

myhealthevet, I can’t see how getting our health records could
be a problem because I see veterans who really, really want to do this and I
see family members also who really, really want this.

And when you sit down and teach someone how to do it, they
don’t find it difficult. I haven’t found anyone yet that has not been able to
get on myhealthevet, register, and be able to maneuver on it. And they keep
coming back more and more and more.

So again, this is just a very small presentation, very simple.
That’s what I’m about – very simple. Plain. No special effects. Nothing.
Simple. And that’s what it is, I think, is the key to learning for all our
veterans, especially our elderly veterans.

So if anyone has any questions, I’d be willing to try to answer
them.

DR. COHN: Okay, Jim, thank you. We’ll let Peter present, I
think, and then we’ll have a discussion after that, but thank you for the
presentation. Peter, do you need to get on the computer? Okay.

AGENDA ITEM: Presentation – DR. PETER
BASCH

DR. BASCH: Good afternoon. Thank you for the opportunity to
address the NCVHS on this issue. And I want to say that it’s a tough act to
follow after watching the presentation on myhealthevet, and I was tempted after
watching it to pull out my checkbook.

I didn’t bring it with me, but I would like one of your cards
because we are right now, this week, going through a computer upgrade and we
have hundreds, perhaps thousands, of computers that I was told was going to be
thrown out.

And I’ve always asked: Somebody must need these. So I’m glad I
came today if for no other reason than to know that we might have a home for
our computers that are just not powerful enough to use the new EHR that we’re
putting in our clinics.

Okay – who am I? I’ve been practicing general internal
medicine in a small practice on Capitol Hill for about 23 years, changing my
status from a small business owner to an employed physician about 10 years ago.
I was the first user of an ambulatory EHR within my health system as well as an
early adopter of patient-physician email, physician practice websites and
e-prescribing.

In addition to seeing patients, which I still do about
halftime, I’m also the Medical Director for eHealth for my health system. I get
bored easily and serve on a lot of other functions, including Foundation for
eHealth. I think the correct term is a “pre-RIO,” the Maryland-DC
Collaborative for Health Information Technology.

I’m also Co-Chair, along with David Kibbe, of the Physicians
EHR Coalition, or PEHRC, and the Small Practice

Workgroup for HIT adoption of the eHealth Initiative.

But now for the proviso and disclaimer: I’m here today
speaking as a practicing physician, and although I am informed by my service
leadership on these various organizations, I have to add that the comments and
viewpoints expressed today are mine alone and not necessarily those of MedStar
Health, eHealth Initiative, American College of Physicians, or the Physicians
EHR Coalition.

All right, Headline Number One – “Physicians Embrace
the PHR.”

As a practicing physician and early adopter of HIT, I’ve
always test-marketed applications before colleagues, first in my small practice
which was initially four, now seven; then in my larger, employee practice group
of 70, and lastly to anyone I can corner and talk to, basically any interested
physician either employed or in private practice.

And in preparation for my comments today, I presented
information about the PHR to several clinicians — this is a non-representative
sample – and asked a series of questions and received these overwhelmingly
positive responses:

“Well, of course, why wouldn’t we do this?”

“It will not only make things better for patients, it will
improve quality of practice for us.”

And my favorite, and I got coaching from my children on how to
say this properly. This is:

“Duh” – which means “of course,” as
opposed to “Doh,” which means I blundered.

Well, of course, when I describe the PHR using just about the
same words but framed it a little differently and shaded the description a
little bit differently, I got some very different answers, like:

“That’s crazy.”

Or, “You’ve got to be kidding me.”

Or, “Have you gone off the deep end?”

The descriptions that led to the positive responses are on the
left hand side of the screen and those that led to the dramatically negative
responses are on the right.

And let me clarify that physicians I spoke with were uniformly
in favor of providing better service to their patients and sharing information
within their charts as they all agreed to a person that the information within
the chart belongs to the patient.

What drew expressions of disbelief were perhaps some outmoded
views of the PHR that I heard maybe as recently as a few weeks ago but not this
week that talked about the ultimate purpose of the PHR perhaps replacing the

physician’s medical record or as a means of control to
physician access to what you as a physician can see in your file or as an added
expense for physicians on top of what we’re already asking them to do in buying
and maintaining EHRs.

My goal today is to help move the EHR-PHR integration forward, and as such I
believe it is useful to better articulate the issues that we’re having trouble
with, the things that I believe make physicians uncomfortable or even bristle.

And these are the unclear definitions of the PHR. And even
sitting here this afternoon, I’ve heard things that sound like patient use of
computers, patient websites for health information, patient portals to connect
to a physician’s office, a little bit about what sounded more like a classic
PHR, but that’s something that in some ways concerns physicians a lot.

Second would be understanding ownership and control.

And third would be talking about consequences of PHR use on
physician time, cost and complexity.

And these are the easy ones. In addition, if we have time, I’d
also like to present these other musings on the PHR-EHR integration which I
must add keep only me up at night; no one I’ve spoken with has mentioned these.

One is as we talk about the PHR, I always like to ask myself,
and in my role of MedStar before I present a technologic application to the
system, I always ask myself: What problem are we trying to solve? And try and
talk myself out of the solution first by saying, why bother? What am I trying
to do with this? And are there other ways of doing it that are perhaps simpler,
cheaper, perhaps can be done without technology?

Secondly is one that concerns me deeply, and for those who have
heard me talk before have heard me talk about this in terms of a barrier to EHR
adoption – that is, the business case for information management, which I
think is necessary for optimal use of both the EHR and the PHR. And also some
interesting implications of this whole integration on current medical
documentation.

Let’s first go on definition. I think we’ve seen this statement
before; I may be paraphrasing a bit, so I apologize for the misquote. But I
think that when President Bush made the charge last spring, something like
“Most Americans will have an electronic record within eight or 10
years” or whatever it was, that there was an inadvertent contribution to
this confusion. I’m still not really sure what he meant by that, and as the
phrase gets repeated by others, I get even more confused.

Did he mean that doctors will be using an EHR

within 10 years, or that patients will have a PHR within 10
years? Or I’ve even heard some people describe it as, no, no, you’ve got it all
wrong; that we as a country are going to make a radical shift, such that every
American will have a medical record, one medical record, shared by all
providers with the patient having control.

Let me state unequivocably that without a concurrent change in
reimbursement and a medical-legal definition of duty, which are not on anyone’s
agenda, to physicians, the answer is 100 percent clear: Every physician will
continue to be responsible for creating and maintaining his or her own records,
but hopefully by 2014 or sooner, there’ll be electronic and shareable.

Additionally, without a fundamental change in our health care
delivery system, while most, many or perhaps a handful of patients may have
PHRs, the PHR will not replace the electronic record or the paper record.

And to answer what I thought was a specific question that was
posed to the provider panel whether or not the tethered or untethered PHR makes
a difference, I would say in these respects, by definition, it does not.

Going to ownership and control. What makes me 100 percent
convinced of the need for physicians to retain ownership and control of their
records is not what you might think but functions in sub-bullet points 2 and 3,
which are what I believe are unfortunately the most important functions of the
medical record today – not the information that’s what’s in it to care for
patients, but the basis for payment and defense against the offense of billing
fraud and the defense against future malpractice claims.

And again, unless we make a fundamental change in our payment
system or liability system, which I’d be happy to argue for but I don’t think
this is the right venue, the PHR cannot serve as a tool that could alter or
control the physician’s medical-legal record, but it is certainly permissible
to format the PHR such that a copy of the information is easily shareable for
whomever needs it – providers, patients, care givers, others – and
align the EHR with either a tethered or untethered PHR; it does make a
difference.

Consequences of use. And here I quibble with something that
Andy Wiesenthal brought up before where he said physicians and staff are
relieved of the unwanted responsibility of being information brokers in
situations where they add no additional value to the information. I’m an
internist.

Basically what I do is I’m an information broker. I take
historical information, I take physical information, I get information from
other specialists, and I help patients to make, I hope, better decisions based
on my collective knowledge and wisdom and having been through the experience
for many, many years.

So I would say that it is not an unwanted responsibility.
That’s what many of us do for a living and that’s why many of us practice
medicine.

But, going to consequences of use, I would believe in most
cases, because I haven’t seen the PHR yet that does the ideal that many have
talked about, that the PHR’s value increases, or perhaps only exists, when it’s
connected – and we could make this plural – qualified and relevant
clinicians.

The simple stuff are the requests, the appointments and
refills, and I’ve put this more in the realm of what a half-decent patient
portal could do, but certainly the consequences of having connection with a PHR
and EHR are the things that I’ve listed below – answering medical
questions, reconciliation of conflicting data, second opinions, and
facilitating care coordination.

All of these obvious extensions of enhanced connectivity are
currently unreimbursable, and the burden of adding more unreimbursed work
enabled by the connected PHR will not fall equally on all physicians. Don’t
want to pick on my friends, the cosmetic dermatologists, but they’re unlikely
to be asked about, so what did I read this week about the NEX Cox-2 inhibitor
being unsafe or even an Nsed(?) being unsafe?

Every medical discovery typically leads to serious and wanted
questions. These are things we want to discuss with patients. But they
typically fall on pediatricians, internists, family practitioners, PCPs.

And I’ll add with a little bit of self-interest here that with
PCPs already on the lowest end of the MD pay and professional scale, it would
be extremely unwise to add more burden and unfunded work to this endangered
group of physicians, although interestingly a thoughtful solution to the
problem of misaligned costs and benefits of HIT, which includes the
implications and consequences of its optimal use, may pave the way for
widespread EHR and even PHR adoption or may obviate the need for PHRs for most
patients.

Now for my own musings.

So, PHR – why bother? As I’ve looked at what I’ve read
about patient surveys, about what they’re looking for in a PHR or from my own
practice perspective about why I might want patients to have a PHR, I look at
this most typically as a response to poor access – access to their own
information, action to their clinicians to ask questions, discuss problems, or
seek care.

Access problems of these types are due not to technologic
faults but rather, in my opinion, to a flawed reimbursement system, one that
makes non-procedural contact with patients seem like a waste of time.

Whether these informational contacts occur during an office
visit – do you ever notice, for those of us who are physicians, we’re
always rushing patients with “Yes, yes, I know, speak faster; that’s
enough of your history?” – well, that’s not necessarily a good thing
to do but all of our informational contacts with patients are rushed, whether
it’s in person, over the phone, by fax, or with a connected PHR-EHR.

And the PHR, I believe, will not satisfy these access needs
that patients genuinely have and I genuinely believe need to be satisfied,
unless there is a concomitant business case for information management, unless
we can get physicians to slow down and say, you know, a necessary part

of your day is answering the phone, answering your phone calls,
answering your email, answering your connected EHR-PHR queries. That is your
job.

And similarly, other less important reasons for wanting the PHR
which I think moving information to another clinician or retaining control over
ones on information, which I think are legitimate, can also be done without a
PHR. So, why would I want some patients to use a PHR?

And again, I’m an internist. I have only adult patients, I have
no nursing home patients, so my experience is a little bit limited, but I would
say the one circumstance where I would encourage my patients, in fact would
love my patients to have an advanced connected PHR is where I need their help.

And that’s where physicians who I think are being honest could
say that caring for patients with multiple, complex, chronic diseases cannot do
it on their own. We need patients as active collaborators, and for these
patients, any tools that allow us to share quality control, share data exchange
are sorely needed.

But the important point to remember here is the PHR, like the
EHR, serves as an enabler of process change and its successful adoption does
not necessarily mean less work. In my view, what means, particularly for these
patients, much of the activity of chronic disease management becomes virtual,
occurring between office visits.

My favorite topic, the business case for information
management. I would say this fact is generalizable. HIT adoption is pretty much
worthless without accompanying process change, process change that is oriented
away from episodic and reactive care to proactive and continuous care,
including care coordination.

While all of these activities are made easier and more
effective with HIT, they still require added time, cost and effort, and if
people say they don’t, they’re not using the tools well. And thus I believe
they’re not likely to be done without reimbursement, reform or incentives,
which is of course the basis for pay-for-performance programs.

Incentives for technology adoption alone, whether they be for
the PHR, the EHR or their integrated use, I believe are likely to result in
what I would term “digital dysfunction” and a waste of technologic
potential rather the four grand goals laid out by Dr. Brailer.

Okay, one last musing – rethinking medical documentation,
one of my other favorite subjects after business case. And certainly this comes
up all the time. Once when I was showing one of my colleagues who was one of
the last people to turn the lights off at HCFA before they

changed their name, who I practiced with for 10 years, Dr. Bob
Berenson, and I showed him with much pride the electronic record system that
we’ve been using for eight years.

He left before we introduced it, and as you know, Bob is not
one to be polite when he doesn’t have to be and certainly not with people he
knows well. And he took a look at it and he said, “Yeah? So? It’s a bunch
of garbage.”

Well, he’s right, and in fact I would say that most of what is
in medical records these days, whether it’s put in illegibly with pen and ink
or legibly with computers, are a complete waste of time.

And one of my great fears is if the standards movement actually
succeeds and we’re able to more easily mobilize medical information, God help
us. I don’t think it will do much good.

And if any of you say, yes, please, go ahead, come to my
office, take a look at my easily readable medical records or I could anonymize
them and I’ll secure email them to you. They’re really full of junk. They are
bloated, they have unnecessary verbiage either to comply with ENM coding
deadlines or to satisfy what I believe is a misconception – that longer
notes equal greater protection against errors and malpractice.

If we really want to share useful and usable information more
effectively between providers or between providers and patients, instead of
building what I have been told we could do, complex filtering schema to filter
out this garbage and find the few kernels of knowledge prior to sharing, why
not instead seize the opportunity to reform documentation with the older,
paper-based, problem-oriented medical record, the thing I learned on, turning
into what I would call a quality oriented, standards-based, shareable record.

So in summary, I believe that whether the PHR is tethered or
untethered is really not very important, and certainly this comes from my
perspective as somebody who is not in a closed system who will be representing
physicians using multiple EHRs and understands that a tethered PHR makes
eminent sense to someone like Andy in a closed system won’t necessarily work in
an open system.

Defining the PHR is extremely important and needs to be clear
if only to put to bed legitimate concerns that providers have about ownership
and control of medical records which can’t be changed without changing the
payment system or liability standards.

Pressures to de-silo medical information, which I agree it, via
connected electronic health records, health information exchange, the CCR
– continuity of care record,

or with PHRs, presents an opportunity not to share bloated
garbage but to first make medical records actually useful, and an opportunity
also, I think, to engage physicians and win their hearts and minds because I
think physicians to a person largely would agree that the current documentation
standards are meritless, wasteful and even mind-numbing.

Lastly, the most important issue to address prior to advancing
any technologic solution is to make sure there is, first, a sustainable and
attractive business case aligned both towards societal goals and the
consequences of successful adoption and optimal use of the technology.

However attractive a PHR application is, and I’ve seen many
excellent PHR applications, both tethered and untethered, if its successful
adoption leads to more non-reimbursable activity on the part of providers, it
will not be adopted. Or worse, if it is adopted, it will be used in a
dysfunctional manner, much like most EHRs are used today.

Creating a business case for information management, however,
will help to incent necessary HIT of many varieties, including, perhaps, a PHR,
but more importantly, guarantee that we end up not with doctors and patients
separated by a sea of gadgets but rather with an improved health care system
with the focus on enhancing quality, safety, efficiency, and what I believe is
a real driver for the PHR, access.

Thank you.

DR. COHN: Well, I want to thank our presenters. It was a very
interesting set of presentations. Andy, are you on the phone? I guess I should
ask.

DR. WIESENTHAL: I certainly.

DR. COHN: Okay, great. Okay, well, I think Steve Steindel wants
to start out with questions, and Mike Fitsmaurice – we’ll sort of take
them around the room.

Questions, Answers and Comments

MR. STEINDEL: I may have a second set of

questions after I think about this a little bit more.

First of all, there were, as Simon said, extremely good three
presentations, different aspects of the PHR, all very good food for thought.

The observation I made from the three presentations and a lot
of presentations before is that the successful implementation of the PHR will
be successfully involving the patient in using the PHR. And my question is not
to any of the panelists. Unfortunately, I haven’t had a chance to warn her
about this, but it’s to my colleague on the side from the VA, and Linda, you
don’t have to answer this question, but just bring it up.

This was fascinating on what’s going on, the Bedford VA. How
many other VAs is it going on in – and don’t answer it if you can’t.

MS. FISCHETTI: Jimmy, may I defer this question to you?

MR. MAGIERA: I can’t answer for all VAs, but I can tell you
that we started bringing this program from Maine all the way down to, I
believe, Rhode Island. We were helped with a private organization, at the time
was Bell Atlantic. It’s now, I believe, Verizon. They helped us learn some of
the technology to be able to network our computers.

And when we started getting a lot of computers donated to us,
we started bringing them to other VA hospitals and we started these programs.
They had at least two or three computers.

I don’t know where the programs are at this point, but I know
if it’s going to succeed, it’s going to take someone to work at it. You can’t
just put the computers in a room and let veterans go in on their own and use
them because most of the veterans that I deal with are not capable of keeping
the computers clean from viruses or if there is something that gets damaged on
the computer, the hard drive and the Windows, how to repair it.

So, again, we were helping quite a few VAs for a while. We’re
also willing to help again. Just let us know where we can get a hold of –
I’ll even send some computers to you. We’re getting more computers. When we
update ours, we either give them to veterans or we send them to even special
needs children. So we can use them, and again, yes, we did start some programs
around.

MR. STEINDEL: For those on the Internet, please hear the
commercial and send computers!

DR. COHN: Andy, did you have a comment?

DR. WIESENTHAL: Yes, I did. I think that, if I was listening
for the subtext to the question, it’s all about who has access to the Web and
who is already capable or could be made capable of taking advantage of anything
like this, and there are a lot of ways of looking at this.

In our system, and our membership is very, very broadly
reflective of the populations in the areas that we have our operations, so
about 11, 12 percent of our members are elderly, over the age of 65. We’ve got
kids, we’ve got people where English is not the first language. And all in the
kinds of proportions that you’d see across the country.

We know a couple of things. We know that of the 8.2 million,
about 15 to 20 percent of them are currently active users of our portal, which
is a lot but certainly not the majority. We also know, when we asked them, that
upwards of 75 percent report that they have access to the Internet and use it
today either at home or at work, and that number has been rising over the last
five to 10 years.

So even in the face of no active program on our part or anybody
else’s with the exception of the one we’ve seen today to help train people
explicitly to do these kinds of tasks, large numbers of people do and there’s a
sort of oft-quoted factoid that says something like our health care websites
are now more often visited than the pornographic websites are, so that there’s
a lot of folks going out there on the Web looking at health care and it’s not
just one person doing it a million times; it’s millions of people doing it
millions of times.

DR. COHN: Yes. Thank you, Andy. Peter Basch has a comment that
he wants to make and then, Linda, did you have a comment on this?

MS. FISCHETTI: Oh, I just wanted to follow up and say that
myhealthevet is a national program, so we’ve presented today our experiences in
one area of the country but this is a national program throughout all of our
facilities.

Not all of our facilities have a Jimmy that’s done as good of a
job as we have at Bedford, so there are variable levels of announcements,
engagements, advertising that’s taking place at all of the facilities. But it
is a national –

MS. DEERING: It is a national program.

DR. COHN: Yes. Peter?

DR. BASCH: My comment’s going to show off my professional
schizophrenia in that the very first thing I’m going to do when I leave this
room is try and find out how I can get my computers to this gentleman and
support this program because in my heart I believe that anything we could do
for veterans needs to be done. I mean, and I won’t wax on about that, but it’s
a wonderful program.

On the other hand, as a practicing physician who works in
Washington, DC, who is watching this health care system globally – is
“implode” too strong a word? – where emergency room access is
awful to terrible, depending on the day; hospital bed access is “don’t
bother coming in because you’ll sit in the hallway for 24 hours on a monitor
because we don’t have beds,” I often think about need to have versus nice
to have.

And responding to your question, Steven, about what’s necessary
to have to make the PHR work, I would say yes, we need the patient’s
involvement, but I would implore this group as they’re thinking about that to
think about: Is it something we need for all patients?

And I would add that my wife, who’s a lawyer, has said never
argue against interest, but I do it all the time. In the argument about how to
incent EHR adoption, I have put forward the case that incenting EHRs for all
physicians isn’t necessarily wise, isn’t necessarily a good use of scarce
dollars.

If we had trillions of dollars in surplus, sure, let’s pay
every physician, $20,000 to put in a state-of-the-art IT system to maybe
improve care.

But I can tell you as a practicing physician, every physician
doesn’t need one and it will waste needed resources.

From my perspective, while I want to do everything we can do
certainly to help the vets and I think this program is wonderful, if we’re
thinking about using scarce resources to incent PHRs, I think certain classes
of patients will not just enjoy them and participate with them but will be able
to show improved outcome with them, and I don’t think we’re going to see that
with all patients.

DR. COHN: Peter, thank you.

MR. MAGIERA: May I ask a question?

DR. COHN: Oh, sure.

MR. MAGIERA: Has there been a study on how veterans improve, or
don’t improve, working with computers? I think there should be a grant or some
study on this.

I find that every veteran that I’ve worked with is improved. I
mean, they’re using their minds once again. They’re coming down there out of
the wards. This helps the nursing staff. They’re spending their time with me on
a computer. This has got to be healthy.

I mean, my computer system is separate from the hospital
network system. I have no restrictions; the hospital does. If you put the word
“sex” or something in a network system in the VA, you may get blocked
out. You put it in mine, you go right straight through.

But I do have rules. It’s a privilege to be able to use the
computers in our lab, and you’ve got to follow our rules. And out of the 40,000
veterans who have come through there, I can’t think of more than five that are
not allowed to come back because they went on a pornography site.

This is important to them. They don’t want to take that chance
of losing their ability to come down and use those computers.

You know, the day of making little model cars and little
paintings – don’t get me wrong; that’s still useful – but the
veterans today want to get on the computers. They want to contact their
families. They want to be able to get education on there. They want their
health information.

I had a little questionnaire that I was using for a while and I
asked a couple of question. I said, “Why do you want to go on there?”
Before the Internet, we were able to get on the Internet, it was just “I
want to be able to write a letter and play a couple of games on there.”

Now, it’s totally different. They want to know what their
benefits are and what their health information is. And then they want to be
able to get email.

So it’s changing, it’s changing. They no longer just want to go
on a computer and waste their time looking at all these little games. That’s
part of it, sure – when you’ve done your work and you’ve found the
information, you go and play a few games. But they want information that’s
going to help them.

And it has to be helping. I see it every single day. These
people who were sitting and looking out a window watching these ambulances
going back and forth and

wondering when their turn was to go in that ambulance and not
come back are now in our computer lab spending six hours a day, some of them.
You can’t get them out.

We don’t close, even during lunchtime, because a lot of
veterans who are in work groups are CWT, Compensated Work Therapy programs,
their only time to get to the computers is during lunch, so we don’t close. We
stay open six, seven straight hours.

We’re trying to be as available as possible. They need this.
They want it. And it’s got to be, it has to be, good for you to be able to
continue to use your mind even at 90 years old because he knows enough to keep
coming back and he wants to come back and doesn’t want to go back to his room.

DR. COHN: Okay. Eduardo, did you have a comment about any of
the last couple of things?

DR. ORTIZ: Yes. I’d say it’s related to several of the
comments.

DR. COHN: Okay.

DR. ORTIZ: So, first of all, from the VA perspective, a couple
of comments.

One, having worked in about seven different VAs through my
different academic affiliations and currently being at the Washington, DC VA
Medical Center, it’s important to understand that the VA has a lot of national
roll-outs of myhealthevet and care management stuff and advance clinic access
and tons of stuff. But in terms of how it’s rolled out at the individual VA,
it’s highly variable and it really depends on the individual VA site.

So it’s not like myhealthevet is uniformly implemented and used
at all sites. So that’s an important thing to understand, although the obvious
goal is to get it widespread.

In terms of what they’ve done up there in Massachusetts, that’s
not something that’s universally done at any of the VAs I’ve been in to. That’s
stuff that’s related his initiative and what he’s done from

Massachusetts down to Rhode Island.

And I think what you need to do is see individually who has
done that. But as far as I know, there’s not anything nationally. None of the
VAs I’ve been affiliated with have done anything to that extent.

So I applaud the work he’s done, and I think that’s great. But
I would also say, too, that although I think that’s very useful and important,
one of the things I would also say, too, you have to kind of back off, too, and
look at some data in terms of when you roll these things out – not just in
the VA but everywhere else – start to look at who’s actually using them,
what percentage of veterans or anybody else is using these things, because
that’s important.

We don’t have real use data out there, so as we roll these
things out, and I’ll kind – even though I work for the VA, I’ll kind of
take off my VA hat and just, as a health services researcher and informatics
person, one of the things I will kind of encourage and push to the VA is to
study this more. I mean, when you roll these things out, you should be studying
it as you roll it one.

And that’s one of their problems. The VA has a lot of IT
dollars for implementation, but not for evaluation.

And so even though they’ve been one of the top places in the
country rolling out IT and patient safety programs and all these things, they
haven’t done formal evaluations to see what is the extent of the impact in
terms of outcomes. And I think that’s very important.

And so one of the things – Linda and I both work for the
VA but in different shops – so one of the things I push back is for Linda
to go back to Rob Kolodner and their group and say, as you roll these out,
study it, evaluate it, figure out what the impact is.

And I’ll bring out just kind of a self-serving thing, but since
Simon and Andy both are on their call, just to let you know that probably in
March or April there’ll be an article coming out in JAMIA that talks about the
experiences of Kaiser Permanente. It looks at data from 1999 to 2002 and looks
at use of eHealth during that time period.

During that time period in 2002, they had 117,000 users of
eHealth, but that only represented 3.4 percent of all Kaiser members, 9.3
percent of members who had access, so even though the numbers were big, the
relative numbers are still pretty small.

But it also looks at things like age categories, race,
socio-demographic status, whether you had insurance, Medicare, Medicaid,
whether you had certain co-morbidities, what was your disease index. So there’s
a lot of characteristics that we looked at. So be on the lookout for that in
probably March, April edition.

Dr. John Shu is the lead author on that, and there’ll be
hopefully a couple of papers and that might be very informative because
although it is Kaiser Permanente and it may not represent the general
population, because Kaiser’s such a big group, it probably does reflect a lot
of what you would see out there in the health care world, so I think that would
be something very useful.

But I’d like to see the VA and anyone else who starts rolling
these things out to the extent possible to try and collect some of this type of
data so we can learn, because we really don’t know who’s using it, why they’re
using it, what services they’re using, what they value, what the impact is.
Unless you study it, we’re not going to know.

DR. COHN: I guess I would comment – and I’m sure others
will comment also – but I think we need to bookmark and remember this
issue of research initiatives, the need to study.

And I think whatever we may eventually come forward with
probably needs to include a section devoted to that issue. And obviously, thank
you for reminding us about this wonderful document coming out.

Any other comments? Andy, do you have any final thing on this
issue? And I think this one again reinforces Jim, what you were just talking
about, about this issue of researching and knowing what’s successful in all of
this, so –

DR. WIESENTHAL: I do have one small thing. I wanted to correct
misimpression that Peter Basch may have gotten. I didn’t say that doctors
shouldn’t be information brokers. I said they should not be information brokers
where they don’t add value to the information.

And there’s a distinction there, so when you help a patient
understand something, that’s valuable. If you’re merely telling them for the
next time that they have been following a cholesterol – you know, and
their cholesterol is the same as it was three months ago and three months
before that, I would say you add no value to that member and shouldn’t
intervene in the process.

The larger comment is I don’t know what the objectives were for
sure here, but it seems to me that some form of personal health information on
line is desired by many Americans, and not necessarily all, but many, and so
getting some clarity about what the rules to help govern that and what kinds of
information would be the most useful to people are both topics for research and
immediate operational issues for lots and lots of people who want to be able to
provide this, big and small.

And we’ll gain experience, others like the VA will gain
experience, and we’ve got to start informing the rest of the public about
what’s happening when we give information to our patients and members on line.

DR. COHN: Peter, do you have a comment on that? And then we’ll
move to the –

DR. BASCH: Just very quickly, because I don’t like to pass up
an opportunity to joust with my friend Andy.

I didn’t misunderstand you. I was actually putting a slightly
different spin to what you were saying. And that spin is that a lot of people
assume that the movement, or mobilization, of normal results to patients is a
benign activity and one that requires no input on the part of the doctor.

And I would say that as a practicing physician, that is not
only not true, but that’s one of our biggest failings. As a general internist,
many of the patients I see have come back to me from the specialist with either
chest pain or belly pain and they’ve gotten these “no comment”
reports from the specialist saying, well, your upper GI is normal; go back to
your internist.

Well, that’s the, you know, send the normal results or the
normal cholesterol. Last month might actually not be an ideal cholesterol this
month, or if you just developed diabetes, the standard that we want to go to
might be a little bit different.

So I’d say that most of the time we do add value to
information. It’s very unusual for me to send a report that’s normal, and
perhaps this is more representative of an internist patient population or maybe
one of the things that drives me crazy, but when I open my labs every morning
– they’re electronic and they show up on my desktop and my EMR – I
get a little asterisk if there’s an abnormal value associated with it.
Ninety-nine percent of them have some abnormality, because typically, as people
get older, nothing is ever completely normal. There are very few findings that
I think don’t have some shades of interpretation.

So while I agree with you, Andy, I would say that most of the
time the case of the sending the normal result without comment is very rare.

DR. WIESENTHAL: We’re going to find out because our internists
want to do it in large quantities.

DR. BASCH: Let them do it.

DR. COHN: I guess something yet to be studied.

DR. WIESENTHAL: Yes.

DR. COHN: Now, our next question is from Mike Fitzmaurice and
we have Mary Jo Deering.

DR. FITZMAURICE: A quick question, I hope, for Peter.

A BAS team has developed a continuity of care record which is a
data set that one physician wants to communicate to another physician via the
patient. Do you have any opinions about the set of data that’s in there? Would
that be useful information for a personal health record or is it off the mark?

DR. BASCH: I need to be careful here because when I give,
again, my opinion on the CCR, let me add that I’m speaking for myself and not
for any of the organizations I work with because some of them have very strong
opinions one way or the other on the CCR.

I happen to believe that the continuity of care record as a
concept has enormous value, but perhaps it’s because of the envelope that I
consider it in. I consider the continuity of care record before it was, let’s
say, grabbed onto by every interest group who expanded it from a short summary
to a multi-page document that sometimes get a bit unwieldy, is the electronic
equivalent of what every doctor trained with and feels is an extremely
appropriate way of passing off information.

That is, the targeted, structured handoff, something we all
learned in training days as sign-out rounds, and I’ll give you the analog
equivalent.

When I send someone to the emergency room at my institutions, I
usually make a phone call and I also generally tell someone I’m sending over
electronically the problem list, the meds, the most recent labs. And it’s
usually a very short conversation which is essentially the essence of the CCR
– a certain amount of structured data and a little bit of interpretation.

That little bit of interpretation is the nugget that might save
the ER three hours of work or might lead to a correct diagnosis, or maybe not,
you know, depending if it’s timely or not.

But I always follow that discussion with a, “And would you
like me to send the complete records?” Actually, easier for me to send the
full record than to take three minutes and describe a subset of it.

And I’m always told, “Oh, God, please don’t do that. We
won’t have time to read it. It’s mostly full of junk anyway. We’ve seen your
records, Peter.”

So, if the CCR can function as an opportunity to provide
targeted, structured handoffs that ultimately will allow for relatively
seamless export and import of information, I think it serves a useful function
not just in those situations but to a PHR.

Patients who have untethered PHRs could feed their PHRs with
multiple CCRs. I like to think of the CCR in that case sort of like as a
messenger RNA. It feeds a bit of protinaceous material and disappears and
disappears after it does its job.

So I think there is value in it.

DR. COHN: Mary Jo Deering.

MS. DEERING: I actually have two separate questions for two
different people, and I will just ask them one at a time, but I’m claiming
right to ask my second question, too. I was going to originally ask them in a
different order and ask Andy first because he hasn’t been probed as much, but
this turns out to be a follow-up to what Peter just said, so I’ll ask it first.

I was going to pick up on your comment about the text blobs,
the bloated medical record, and how, as you were talking about that, we had
often heard in the past people talk about the overall effort to bring IT to
health care, that we were worried about that we were just paving over cow paths
et cetera, et cetera.

What I heard in your statement carried that analogy into the
content of the health record, in other words. And again, just as I asked Patti,
and you were here, about the implications of what she was saying for what
constitutes useful information, she wants to add a whole array of information
that nobody is currently looking at standardizing.

You are suggesting that perhaps there ought to be more careful
ways to look at the contents of the health record and perhaps prioritize
certain sections, areas. Is that a true interpretation of what you said? Is the
CCR step in that direction? Are you working with any of the standards groups to
help them prioritize what it is they standardize?

DR. BASCH: Well, let me take those in a couple of words. I’m
not working with any of the standards groups to help them prioritize what
they’re standardizing.

I found typically – and maybe this is the first exception.
When I’ve made comments like most of what you’re trying to mobilize is crap, so
don’t bother, they don’t want to listen; basically, they have their work to do
and I don’t think they have shown as much interest in consequences of what
happens if they’re actually successful, which I think would be disastrous to
clinical medicine.

I do think that – and this is not just my opinion –
if we turn our memories back a couple of years to the, probably won’t get the
name right, but it was an advisory body on regulatory reform to HHS that
recommended, I believe June of 2001, June of 2002, by a vote of 22 to 1 or 23
to 1 to do away with the ENM coding guidelines, finding them as a waste of
time, they weren’t really looking at that point at the future of the electronic
record.

They were just looking at dissatisfied physicians who were
saying, instead of 15 minutes, I’ve got 10 minutes to spend with a patient, and
I’m spending seven of them writing notes in the chart that no one will ever
read again. If I ever have to read them again, I have no idea of what I just
said because there’s no value in it.

I’m taking that a step further and saying, yes, yes, I agree;
they’re a waste of time. They probably re-focus us away from where they should
and for a lot of reasons we should do away with them.

But if we think even more proactively about the value of the
medical record for the 21st century not as a set of papers of what
we saw but as a way of providing value to the next provider, to the patient in
the next encounter, to the concept of hypertension is not a point in time that
needs to be expounded it, it’s a point on a continuum that needs a little bit
of verbiage and probably structured text associated with it to help doctors and
patients manage those illnesses in the future and certainly do things like
trigger decision support, trigger pay-for-performance and so forth.

So I think our entire concept of what should be in a medical
record should be revisited, and doing it in this fashion can, I think, get us
allies from physicians who may be a little suspect about using the computer.

But if you say, well, if you use a computer and use it under
these rules and follow these performance guidelines, you don’t have to write
seven-page notes when three paragraphs will do, and I think it will also allow
us to actually have stuff that we want to share.

DR. WIESENTHAL: Mary Jo, this is Andy. I couldn’t agree more
with Peter and with the direction that your question is taking. And I will tell
you that we’ve made strenuous efforts to try to get clinicians to look at what
it is exactly that we want in the record and how we want to structure that.

It’s a tough issue, and in some specialties it’s pretty
self-evident to the docs exactly how they want to approach it and it really
seems very easy. In the adult primary care arena, it’s going to take a lot
longer before we can reduce the amount of unwanted or unusable non-information
that gets put into the record because people are striving to be complete for
one reason or another, whether it’s business purposes or medical malpractice
avoidance and so on.

But it’s very, very important, and at the time you implement an
electronic health record and are also telling people that stuff you put into
this record is going into a patient-facing portal, it’s a good time to get them
to start re-thinking about exactly how they populate their notes and their
information.

But the constraints that Peter talked about are real. If you
want to do billing in the United States today as a primary care provider,
you’ve got to do evaluation in management coding, and if you’re going to do
that, you have to do things the way that the rules are set up; otherwise,
you’re going to be guilty of fraud and that’s now been made a felony offense.

MS. DEERING: Thank you. It sounds like a policy challenge not
to the Federal government but to entities like IOM or any of the other major
bodies that might like to elevate that to a larger discussion.

DR. WIESENTHAL: Well, the other place is the specialty
societies —

MS. DEERING: Right.

DR. WIESENTHAL: — because I think if they can develop –
and I’ve challenged my own and they’re tough on the pediatrician – to
figure out what content ought to look like, it’s really something that they
ought to be deciding.

What would transmit good information back and forth between
somebody who’s a colleague or a specialist in your realm is something that the
specialty societies should tackle, but they’re not.

MS. DEERING: Can I ask you a different question?

DR. WIESENTHAL: Sure.

MS. DEERING: On one of your slides, and you did mention it,
when it had to do with the Kaiser Permanente PHR being tethered et cetera, but
then you have a sentence that says, “Other aspects of our software will
enable members to move data to other health care entities, should they
desire.”

DR. WIESENTHAL: Right.

MS. DEERING: I do want you to elaborate on that, but I want to
get to a different aspect of that.

It’s one thing for the technology and the software to enable
it, but what about Kaiser’s business practices? What are the circumstances
under which Kaiser would allow that digitized information to be digitally
transferred? Are there other non-software issues behind that action?

DR. WIESENTHAL: Well, there are several – sort of that’s
loaded, and I’ll answer it.

We don’t see the ownership of information as itself a sort of
proprietary business advantage, so if a member – what I was thinking,
obviously as a member of Kaiser, and they obviously have to transfer their
health information someplace else; or they decide that they want a second
opinion and they go see on their own and pay it for by themselves, they want to
see another physician to ask about a specific set of clinical issues for
themselves, and they want that physician to have information.

One of the things we’re doing is we’re going to open that up
and allow either just to authorize that physician to look at that information
when the person is there and if a member wants to shift their information
somewhere else, that’s their right and privilege, and we will enable that.

Now, there are two ways that can happen. One, today, what will
have to happen is we’ll have to print the contents of their record and give it
to them. And I don’t know if you’ve had the experience of seeing the printed
versions of electronic health records, but they’re pretty ugly. But it’s the
best we can do if the receiving end doesn’t have something digital to receive
it into.

But we’ve also invested in software that over the long haul
will enable the synchronization of information with physicians and providers
that have electronic health records that aren’t us, and we’ll send it to them.

We’re not worried that getting information about our members
in somebody else’s hands is going to hurt us. It’s there to help the members be
cared for, whoever is doing it.

MS. DEERING: Thank you.

DR. COHN: I have a question; it’s actually both for Peter
Basch and for Andy. And I was sort of listening to both of you and I actually
found almost more similar than different.

And I guess I was wondering, given that of course one of you
is an internist and the other is a pediatrician and given that you are both
living in very different payment situations, there’s whole different
methodologies, I’m actually wondering if the differences as we’re hearing from
both of you are really primarily related to the payment methodology issue and a
little bit about the internists or the pediatrician. And Peter, maybe I’ll you
first that question.

DR. BASCH: Sure. I may ask you clarify a little bit more what
aspects of our comments you found more or less similar, more or less different,
because I would start off by saying of course I agree with you. I think that
there are – if you want to answer me, fine, or if you just want to say go
ahead and wing it, I can do that, too.

DR. COHN: Well, I guess what I kept hearing was that if
payment methodologies were aligned and incentives were aligned, then suddenly
it sounds like the answers came out very much sounding like Andy Wiesenthal in
terms of that being actually all the way things could work.

But because of ENM requirements, which are payment issues
– I mean, it goes on and on and on like that because of all the current
constraints of how payment currently occurs, there’s a lot of things that won’t
work currently in your environment.

DR. BASCH: Sure, sure. And I think the differences between
adult internal medicine and pediatric I may have exaggerated. There may be less
of them.

I think that I was focusing more on thinking about who might
actually need a real PHR, a real interactive tool that could communicate
digitally with their physician to improve their care and thinking.

And I’m not a pediatrician, so, Andy, feel free to say, whoa,
hold on there, guy, you’re misspeaking. But I do have children and I certainly
help to manage their care as they’ve gotten older. Fortunately they’ve both
been very healthy and my only needs, informational needs, for my kids have been
immunization records.

And quite honestly, I’m a very disorganized person and I much
prefer to call my pediatrician once a year and say, can you send me that
immunization record again? for the 10th time, because I can’t keep
it anywhere. But that’s been my use.

On the other hand, I do know there are sick kids, and I do
know that sick kids need collaborative management just like sick adults. I
think it might be more common in an adult practice to have chronically ill
people with multiple complex problems that might have more informational needs.

So that’s why I made that difference.

But let me agree with you completely that I think that the
major, in fact, probably the only barrier, to successful adoption and optimal
use – and that’s stressing optimal use – of HIT is our dysfunctional
payment system. I think that what makes a system like Kaiser or the VA function
differently than our private fee-for-service system is in our private
fee-for-service system, with few exceptions, physicians are paid and reminded
constantly with declining reimbursements and the need to be productive, that it
is volume of episodic care and that everything else that you do is, I won’t say
quite a waste

of time, but you have to try and minimize it, and that is the
driver that forces physicians who all go into medicine, I think to a person,
idealistic and wanting to do the right thing and practice the very best they
can to, after a certain number of months or years, become productivity machines
and that’s, I think, one of the prime causes of dissatisfaction in the
business, not being able to do what we want to do for patients, because that’s
why we’re doing this.

I think that we are beginning to see with some
pay-for-performance programs coming out a shift in that. For example, we’re
hoping within our health system that one

of our local major payers will be adopting a huge
pay-for-performance program a la Bridges to Excellence and I’ve been able to
convince my health system, should this occur, not just do we have to expand the
use of our EHR which produces those voluminous crappy notes that I do, but we
need to add certain tools to it, like an integrated patient registry and a
patient portal, because if I’m now going to get paid X-thousands of dollars
extra per year if I can have my doctors perform up to a certain level, I can’t
do that without certain interactive tools. And now I’ve got a business case for
doing the things that we’d all want to do – better care, better
communication, proactive management and so forth.

So it’s a long-winded way of saying I agree completely.

DR. COHN: Andy, do you have any comments?

DR. WIESENTHAL: Well, I’ll be brief and say I agree
completely. You know, when incentives are lined up, you get what you want.
That’s a trite thing to say, but it’s absolutely true. If you push people in a
certain direction, you’re going to get exactly where you’re pushing them.

And I’ll stop there. That’s why I said the personal health
record is not an issue inside of our organization because everybody believes
it’s going to perform useful functions for members.

DR. COHN: Well said. Any final questions for our testifiers?
Gene?

MR. STEUERLE: It’s just a quick one again for Peter and Andy.
But I do want to make a quick comment.

I do think what Jamie represents though in his testimony was
the extraordinary importance of consumer demand. As I’ve looked through this
again and again and we’ve talked about incentives, I think ultimately the
incentive is with the consumer, even if we’re talking about
pay-for-performance, everything else.

It’s ultimately, I think, going back to the consumer, which I
think in some sense – and the consumer’s intermediary like you who’s
actually in some sense marketing the demand for it – I think actually
makes a big difference.

But the question I had was really more for Peter and Andy.
Both of you mentioned briefly the issue of liability as being a potential
obstacle. But I didn’t hear from either of you much in the way of suggestions
about what to do about it. I’m just curious whether it’s just something that’s
out there that just has to be dealt with or whether you have some more formal
recommendations there.

DR. BASCH: Andy, did you want to go first?

DR. WIESENTHAL: Yes, I guess I didn’t make it as

clear as I could have. I believe the physicians will think that
they might be liable for the contents of a personal health record that they
post into it and it would be wrong to hold them accountable for those things if
we don’t equip them with really easy to use tools for actually making sure that
the content of the personal health record is up to date.

And so the approach that I would take is to say we need to
sort of have a honeymoon period or something like that that says “we don’t
think that the personal health record is a reliable document, but we’re getting
started on it, and so for now, caveat emptor” or whatever you want to say
about it – the user beware; it may be incomplete or outdated information,
but it’s better than what we used to have.

And then we make sure that as it becomes more prevalent that
we have a way of insuring that whoever is responsible for putting information
into it can do that in real time and vouch for its accuracy. And if there’s a
way for somebody who looks at the personal health record to know when it was
last updated and who was responsible for that.

I think just like I’m accountable now for something that I put
into a record, I should be continually accountable. It’s not the same question
as the question of ownership that Peter raised so crucially but just I have a
responsibility for making sure that there is up to date information about my
patient in their health record; this is part of their health record and I
should be accountable for that.

But I don’t want to be held accountable if it becomes an
enormous burden that is impossible to cope with because the tools for managing
it just aren’t there.

We need to address that issue and be explicit about that as
personal health records are implemented, and then make sure that we have
covered the liability issue in an overt way so that everybody understands what
it is and if it changes over time, how it’s going to change.

DR. COHN: Peter, did you want to clarify? Want to clarify it?

MR. STEINDEL: Andy, this is Steve Steindel. I have a
clarification question to ask you regarding that.

It would be my assumption that if you put information into a
personal health record, that information should exist in your version of their
electronic health record.

DR. WIESENTHAL: Right.

MR. STEINDEL: And if that’s the case, I would imagine that your
liability would exist is the same as it would exist in the electronic health
record and that would only be if the information was – if you looked at
the personal health record and it was the same information, it was unchanged.
Are you referring to any other aspect of liability?

DR. WIESENTHAL: I’m thinking of a situation which I think is
going to be the more common, and that is that’s untethered. So you have a
health record that you maintain for a patient in your office as a doctor and
then you know that the patient has a personal health record and you find a way
to do exactly what you described, which is to gain information from your health
record system into the patient’s personal health record.

Now, if your health record system is paper, then that becomes
pretty cumbersome, and the burden of doing it is so onerous that I think that
people won’t do it, so there will be more up to date information in the record
you’ve got in your office on many occasions than there is in the personal
health record that’s untethered.

In a tethered system like the one we’re going to have, it’s a
non-issue because in fact it’s not separate records; it’s the same record, it’s
just different views into it. So there’s no problem.

But that’s what I’m trying to get at. That means that we’ve
built the tools so that it doesn’t require an effort on the part of doctors or
nurses to put information into the “personal health record.” Where it
does, that’s a barrier to it being up to date and accurate. And if you don’t
make it easy, there will be differences between what is in the doctor’s record
and what is in the patient’s record.

MR. STEINDEL: Thank you for that clarification. It makes sense
to me now.

DR. BASCH: Let me start by saying that Andy’s a much nicer
person than I am because I’m assuming in the world of the untethered PHR that I
will make either electronic or paper copies of information available because I
believe, like most doctors do, that the information belongs to the patient.

But I’m not going to be the one putting it in or typing it in
or reconciling it or buying it for them.

In response to your first comment about consumer demand, as a
primary care doc who accepts all insurances and tries to keep his doors open,
my sense of answering consumer demand is we’re going to keep our doors open.
And if patients say, well, you don’t have this particular luxury item for us,
I’ll say, fine; I’m sorry, you’ll have to go elsewhere.

So I know that consumers may want it, but they’re going to have
a difficult time necessarily exerting that demand from a very overtaxed system.

Getting to the issue of liability, though, I look at this in
three separate areas, two of which are germane to this discussion; one is of
interest to me and probably not germane to the PHR.

My specific comment on liability had to do with the sense of
control of the record. And perhaps my comments and my concerns were based on
yesterday’s or last week’s or last year’s version of what the PHR might be,
which is patient control of the actual record of record. And I have heard
people talk about that, I have heard PHR zealots say that is the ultimate
vision.

My concern about liability was physicians can never give up
their medical legal record because we are duty-bound medically, legally, to
preserve it. So that was a very narrow concern about liability there, which
sounds like, as I’m listening to this discussion today, is based on an outmoded
concern.

Secondly, in terms of the liability, and I’ll take a slightly
different spin than Andy’s, of interfacing with a PHR. I’m going to say that
I’ll tell my patients who want to use one, and we will have a version of a
tethered one, kind of more of a patient portal, but for the untethered one.

Just like my patients who use Quicken – I’ll give you the
data and it’s yours – you know, you could put it in, you could misuse it,
you could spin it upside down. Once you got it, it’s yours to play with, guy,
and I will not feel one bit responsible for how they manipulate it or change it
because I have my own record as a back-up for this is what I sent you; I don’t
know what you did with it.

Looking at it the other way, as we take input from personal
health records, physicians are now duty-bound, and I think justifiably liable,
for always assessing the reliability of their informational inputs.

We’re taught when we’re in medical school and taking medical
histories to determine the reliability and accuracy of the historian and
looking at data as we hear it, say, does this sound right to you?

So if a patient presents, let’s say, a PHR to me that says
they had appendectomies in 1980, 1982 and 1985, if I just say, “Oh, cool,
except –” and put into my record, I’m an idiot. And if I get sued for
that, I should be.

On the other hand, I should stop and say, wait a second; did
you really mean to say that? Let me take a look at those scars and let me see
what I think they are, and oh, you really had this, this and this. We do this
with patients all the time. We either get misinformation from a doctor or
mishear something or misremember it.

So I don’t think that the PHR would necessarily change it. I
think physicians will always have a

responsibility that the information comes verbal, fax, phone or
electronic via a PHR to look at it, interpret it, and say, does this seem like
it’s sensible and useful information before they accept into their record.

The third part that I think is not necessarily germane to
today has to do with extending liability in an interconnected health care
system where information flows more freely and what was in one silo and
somebody else’s problem now is in a dozen silos and a dozen people’s problems.
But I don’t think that’s the work of this Committee.

DR. COHN: That’s actually hard to know, but it’s probably the
responsibility of somebody. But you’re right; we’re not lawyers. But certainly,
one has to be a little paranoid about wanting things to be prescribed and
clarified.

And I really want to thank all of you. Andy, you, obviously
Peter Basch, Jim Mageira, for your presentations. I think they’ve been
fascinating. Peter, I think you’re going to cause me to think very hard about
my 30 years of medical documentation practices.

[Laughter.]

DR. COHN: Yeah – whoops! But I guess there’s always a new
day and a new opportunity to clean up one’s act. But really I think it’s been
very useful. I really want to thank you all for taking time.

And I think we’re running a little late on this session, but
it’s been well worthwhile and very thoughtful.

Andy, I presume I will look at things and give you a call a
little later on?

DR. WIESENTHAL: Yes, that’s fine.

DR. COHN: Okay. And so thank you very much for taking time.

DR. WIESENTHAL: And thank you all for the opportunity to talk
together today. I appreciate it, even virtually.

DR. COHN: Yes, thank you so much.

DR. WIESENTHAL: Bye.

DR. COHN: Bye. Peter, the final comment I would

make is that the first session, and I don’t know if you were
here or not, we talked about how unclear what a PHR is and David Lansky sort of
described work that he’s doing that at the beginning he sort of said, well,
there’s no real definition; the world there is very hazy. He’s trying to do
some work.

So anything that you may have thought that you had heard or
otherwise or on the table or off the table, you shouldn’t necessarily assume
things will either remain on the table of off the table in anything that
happens on all of this because I think it’s very much of an evolving

thing. It’s a dimension. We’re trying to figure out a system, a
record. We’re trying to come up hopefully with some definitions or a taxonomy
that maybe creates a little more clarity around all of this stuff.

So I guess hopefully everything will make sense when everything
is done and we look forward to the Federal government being very helpful in
finding some leadership on that with us assisting.

So thank you very much. And Jim, thank you once again for
reminding us about the importance of championship in all of this.

MR. MAGIERA: Well, thank you very much for inviting me to be
able to just speak as an average person, a veteran and employee. And thank you
very much, all of you. You’ve been very nice to me while I’ve been here, too,
so thank you very much.

Open Microphone

DR. COHN: Now we have a couple of minutes. I think what we’re
going to do is to, first of all, offer just sort of an open microphone time in
case there’s anybody in attendance who feels that they need to make a statement
or comment about any of the testimony today or any of the issues we’ve
discussed.

John, did you have any questions or comments?

DR. LUMPKIN: No, actually I thought there were a

lot of good questions, a lot of good discussion. I’m not sure I
have a lot more clarity that I did when it started, but that’s good stuff,
though; that’s why we have the hearing.

DR. COHN: Yes, probably just thoughts on your medical record
documentation practices. [Laughs.]

Carol Bickford wanted to make a comment – please.

MS. BICKFORD: Carol Bickford, American Nurses Association.

The discussion today has been focusing on the Federal sector.
Are you going to be exploring what’s being done at the state government and
local level where we have some of our local networks that might be in place? Is
that going to be part of the testimony and the coming experiences?

DR. COHN: John, I don’t know if you want to answer that. I
think part of the discussion today and tomorrow will be to figure out next
steps. I think we don’t know at this point. John, did you have another comment
there?

DR. LUMPKIN: I think that’s a fair statement.

DR. COHN: That’s a fair statement, okay. Any other comments,
questions, open testimony?

Come up to the front and introduce yourself, please.

MR. HERSH: Hello. My name is Alex Hersh, and I’m the National
Implementation Manager for myhealthevet within VHA Office of Information.

And I just wanted to assure you that we have a comprehensive
implementation strategy that integrates communications and training and
implementation and support.

Jimmy’s one of about 200 points of contacts that we have in the
field representing each medical center, and as was noted by Dr. Ortiz, we have
variation in the level of performance. Jim is definitely one of our high
performers, but he’s not our only one.

We also have some activities happening within our 21 networks
where there’s collective efforts going on and then also through certain lines
like librarians and patient educators and other folks that have played a vital
role in making it a success.

So, we’re still working hard, but I wanted to assure you that
we have a national strategy and we’re working very hard to make that happen.
And our focus is not just at the VA medical centers; it’s for veterans in
general.

DR. COHN: And Kathleen Fyffe had a question for you?

MS. FYFFE: No.

DR. COHN: No.

MS. FYFFE: Not for you, sir.

DR. COHN: Okay.

MS. FYFFE: I was in and out of the room a couple times today.
On Panel 2 on the Agenda, you have listed David Kibbe and also Catherine
Liberlies. Are they going to be testifying or did they submit written
testimony?

DR. COHN: Catherine is going to be testifying tomorrow. She was
ill today.

MS. FYFFE: Okay.

DR. COHN: And David Kibbe, I believe, is not on the panel.

MS. FYFFE: Okay. Thank you.

AGENDA ITEM: Committee/Workgroup Discussion

DR. COHN: Now I guess I would ask everyone – we’ve got a
couple of minutes left and I think it’s time to sort of think through what
we’ve heard and just so that we can identify issues to bookmark and issues for
next steps and all that.

So I’d ask any of you have been taking notes or have any
thoughts, now’s the time to discuss them.

Stan, you’re usually good at this one.

DR. HUFF: Well, I don’t know that I have too much to add. I
think what I’ve done is gained a lot more information but I haven’t been able
to digest it in a useful way. In other words, in the back I think: What can we
suggest or do that would make it better?

I guess the thoughts I have had are along the lines of one
thing that’s helpful would be to do something along the lines of what’s already
been done for the EHR, which is give definitions and things to words so that
when we use them, we use them – and so we’re not trying to define what the
PHR is but to define characteristics of the PHR in a way that’s consistent so
that people would be able to classify them and talk about them and communicate
effectively about them.

And then I think there are just entirely different dimensions
of them.

One is that sort of classification and comparison and then when
you think about things that we could do, one would be to encourage people to
create consistent content, because again if the processes within offices are
not more consistent, then our ability to offer consistent information when we
share across different domains of information is markedly reduced. And so that
seems to be an important part of this.

One thing that I would say – there was this idea that the
record could also be pictures and other things. In fact, people, for instance,
were doing that.

We put pictures and sound bites and all kinds of things in the
electronic medical record and there are lint codes for those things. There are
lint codes to name that kind of information that you put into a record, and so
people have already started down that pathway, too, which is, I think, a good
thing to do.

So again, I don’t think I’m adding much, but there’s just some
thoughts there.

I think the big challenge now is to synthesize this and say
what, based on what we can learn from what’s testified, what could this
Committee do that would be useful in terms of recommendations or encouragement
that would move this area forward?

DR. COHN: Eduardo, you had a comment?

DR. ORTIZ: Yes. I just thought about this, and I guess I should
have asked it earlier when we had Andy

Wiesenthal on the line, because I’d kind of like to hear

some perspectives from the provider group, although Peter
wasn’t representing MedStar, he was representing himself, so I don’t know if it
would have helped.

But when you were thinking about this whole PHR thing, and
Simon, when you talked about this whole modular thing, which I thought was an
interesting concept, and Patti also kind of seconded that, where there may be
pieces that you can put out there in terms of managing patient information, we
talked about some of the things that aren’t very controversial, like scheduling
appointments, medication refills.

And I think everybody thinks, oh, that’s okay, the patients
probably like it, the clinicians don’t mind.

But then you get into some pieces that are more controversial,
like should patients be able to read their medical records, which people say,
oh, yes, they should – but I’ll tell you, that’s pretty sensitive because
it’s my understanding like at the VA, and myhealthevet people can correct me,
but myhealthevet is set up that they could turn that function on.

But clinicians have balked and said, no, no, no, don’t turn it
on.

So during the pilot roll-out of myhealthevet, they haven’t
turned that piece on because the clinicians didn’t want it turned on.

But yet, not through a study but anecdotally, I gathered some
information from patients, and one of the things that they really wanted was to
read it.

In fact, one person told me that the two things that the vets
wanted to do the most was, one, check their service status because in the
veterans system, you want to know if you’re service-connected or not because it
covers your medical care if you’re service-connected, and the second thing was
they wanted to be able to look at their medical record, look at if it was
accurate.

But then we couldn’t turn it on because the clinicians didn’t
want it.

And I’m not sure where I’m going with this question; it’s just
something that came up that I’m just wondering when we think about the
different modules, there are some things that are more controversial and I
wanted to get some feedback or input at some point in terms of maybe what the
patients think about this kind of thing versus what the providers think and how
we’re going to deal with some of these issues.

DR. COHN: I don’t think you’re going to get an answer, but
you’re going to get some comments. Mike, and Kathleen.

DR. FITZMAURICE: I’ve got a question maybe of you, Eduardo, and
that is: The Privacy Rule says that patients can get access to their medical
record, can look at it and copy it and can add a page of amendment.

Are veterans under the Veterans Affairs not considered covered
entities under the Privacy Rule?

MR. HOUSTON: There’s a substantial difference between what
HIPAA allows and what I think Eduardo’s talking about. What HIPAA says is that
they have an opportunity to review their medical record. That doesn’t mean that
it has to be provided to them on line without some type of structure.

DR. FITZMAURICE: Just a copy they can take away?

MR. HOUSTON: No, it’s not a copy they could take away, because
HIPAA says you have to give them the right to review their medical record
– that might mean going to the medical records department, asking for a
copy of it, or the record itself, which they can review. Copying is still
something that could be charged for, but the point is that –

DR. FITZMAURICE: Agreed. But they can still get a copy of it.

MR. HOUSTON: Right. They can get a copy of it, but I think
there’s a sort of a different structure to it all. And I think the concern is
that there’s an immediacy issue associated with direct access to the medical
record and it might get in the way of providing patient care.

I mean, I’ve heard that argument from physicians.

What happens is somebody goes looking for test results prior to
the time I’ve had a chance to review them and counsel them or to do whatever.
Will that actually cause people harm?

DR. FITZMAURICE: They would have to argue successfully.
Otherwise, it’s reasonable to give the patient the record.

DR. ORTIZ: And I’m not saying that it’s not going to happen,
but I’ve just noted that has been a barrier, and I don’t know about any of the
other sides, but to Mike’s knowledge, Kaiser and Geisinger and the VA and other
places that are rolling out these PHRs or portals or whatever you want to call
them, as far as I know, nobody is letting patients actually have access to the
record, the full record review that the clinicians are writing the notes et
cetera.

It doesn’t mean it’s not going to happen, but I’m wondering if
that’s something we need to talk about, is that something that somebody wants
to comment on from the myhealthevet group? I’m just kind of throwing that out
for discussion.

And it’s not even just the issue that John brought up in terms
of if patients see their lab information before their doctors talk to them
about it because some places actually are giving them specific pieces, like at
Geisinger now, you can actually view a select group of lab results that have
already been kind of determined that it’s okay for patients to see this.

But there’s also issues – just the sensitivity of
reviewing the notes, of seeing what I wrote about the patient and then do I
have to be careful how I write things?

So I think ultimately they will have the rights, but it’s
something that we haven’t gotten there yet and it is part of this eHealth
portal, PHR et cetera, so I’d kind of like to hear what people from the VA have
to say about it, maybe from the developing side and from the patient side.

DR. COHN: Kathleen, did you have a comment on this one, or was
it a different thing?

MS. FYFFE: Yes, actually I do have a comment, but I’d like to
hear Jim go first.

MR. MAGIERA: As a veteran, I want it – I don’t care what
you think. I want that information. Let me determine whether I should have it
or not – not you.

I want to know, as a veteran, what’s in there.

I don’t care if you’re writing progress notes that are saying
something bad about me or maybe it’s something I don’t want to hear. I’m not an
insane person; I can understand them. I’m not going to go jump off the bridge.
I’m not going to come over and threaten you. I’m going to talk about me
personally.

I want to know if you’re saying that my therapy that I’m
getting is doing this or it’s doing that. I want to know that. Let me determine
that, please.

As a veteran who fought for our country, I want to make that
determination, not someone else. Give it to me – all of it. I can live
with it, believe me. I don’t know if all veterans can do that.

MR. HOUSTON: That’s a dilemma, because you’ve just said the key
phrase here which is are all veterans capable, or all patients capable, of
successfully understanding what their medical record means and does it present
harm to some of them?

MR. MAGIERA: Maybe it could, maybe it could.

DR. COHN: And I don’t mean to break in here, but I want to move
the conversation up a little bit because – Eduardo, thank you.

And thank you very much for your comments. It was very
appropriate. But I don’t know that you serve everyone by going to the heart of
problems as opposed to while we’re trying to figure out the overall structure
of what we’re trying to do.

I think you started out and I think your comments about things
were fine, but then it drilled down into a single issue way down here.

MS. FYFFE: And I’m very glad Eduardo brought that up, because I
didn’t realize that there was resistance to letting people look at the records.

But it reminds me of the sensitivity that health insurers and
life insurers have had about not wanting to give copies of the medical records
that they have in their possessions to their insureds because what they found
was they would give the raw copy to the insured and the covered person, the
insured, would see in there – oh, my doctor said, you know,
“40-year-old white obese female,” and that was very offensive to the
40-year-old obese white female, and she would immediately get on the phone and
call her doctor and say, “What do you mean I’m a 40-year-old white obese
female?”

And so the insurance companies would say, no, we don’t want to
give that raw information to you. If you want a copy of your medical record,
you have to go directly to your provider and let him give it to you.

So I just wanted to bring that up as a possible analogy in
terms of the sensitivity that has actually existed in the past about the
documentation.

DR. COHN: And I was just going to chime in and I think Eduardo
was aware that there are currently business practices that occur in the VA as
well as most other organizations about how information is basically given to
patients.

And once again, I’m sure there’s a fair amount of variability,
but usually it’s given in an environment where if there’s questions that they
can be addressed at the time it’s being reviewed.

But if this is an issue we want to explore rather than
speculating how it’s done, we could actually have some people come in and
testify, a panel, if we decided this was one of the key issues that we needed
to come to some resolution on.

MS. DEERING: Just add a spin to it, if I could preempt Jeff for
a minute just to actually wrap that up in terms of framing into a hearing.

It seems to me there’s also the possibility of building from
this into the notion that gets to what Peter and Andy were talking about,
namely, this documentation, and maybe saying – first you start off about
what can patients see and under what circumstances can they see it?

But what about the content?

What are the fields of the PHR, not just the functionalities,
but what are the information fields of the

PHR that everybody could agree were appropriate to be
automatically shared and people would write to those fields within the EHR and
they would be automatically pointed to the PHR?

So maybe that is a way to help get at this prioritization that
Peter was at while also in a way finding a solution to this issue, getting at
the issue without trying to tackle it head-on, but just say, okay, what are
those components of personal health information that, number one, are not
proprietary; number two, should be readily standardized and exchanged?

So that might be another way to frame it.

DR. COHN: Now, Jeff, did you have a comment?

MR. BLAIR: Simon, when I raised my hand at first, I raised it
because I thought you were looking for a summary of what did we learn, but I’m
not sure. Is that what you’re looking for?

DR. COHN: Yes, actually that is what I would like, because I
don’t think we can solve this particular issue that Eduardo brought up in the
moment except to note it and bookmark it for further discussion and decide if
we want to do more action on it.

MR. BLAIR: Well, okay. There’s about five or six major thoughts
that I pulled out of today.

A couple of them came out of David Lansky’s which was that in
addition to the idea that personal health records are targeted to benefit the
patient and also might be useful when they’re shared with the provider for
patient care, it became clear that there’s a lot of benefits of personal health
records if that information can be shared for public health purposes via
certain Federal agencies that could use that.

And so as a result of that observation, it seemed as if, number
one, we need to examine more clearly exactly what would be the circumstances
whereby a patient or individual would agree to share that information for
clinical research and public research.

So that I think is an additional area for exploration. What
would be the mechanisms for that?

The second item out of David’s, and I’m boiling it down to two
right now and then I’ll go on to the others – the second one is that if we
start looking at it for public health and clinical research purposes, the
personal health record will have additional information beyond what the regular
electronic health record might have, specifically: Where do you live and where
do you work and what environmental circumstances have you been exposed to?

And therefore it extends our previous examination of privacy
– how do we wind up dealing with, or what guidelines should we have, in
terms of privacy for the personal health record?

Those are the two from David Lansky.

The other ones, the observations that I picked up from the
second and the third one, which was that I think there’s an expansion of our
conception of early adopters but not only early adopters but folks that would
use personal health records intensively.

And as my understanding of how that altered, it then meant that
there had to be a lot of different data points to capture besides just the
keyboard and the computer, when Pat Brennan testified to us.

And that led to the extension of our concept of

interoperability – what needed to be included in that for
personal health records? It gets very broad and, frankly, I could even think of
three or four more that we didn’t even mention.

You know, we mentioned the idea of possibly mobile devices and
laptops and chips and bar codes and all the rest, but other countries wind up
being able to capture information in the home for clinical purposes, and that
also would need to be interoperable.

So there’s that piece.

And then the last major observation that I think of is that
there’s a lot of different ways people are trying to provide value to patients
or to providers for personal health records and personal health record systems,
and we need to clarify and maybe enumerate that, depending on the intent or
purpose or use case, the idea of personal health records and personal health
record systems has not converged to a single model.

We have multiple models and we probably need to accept and
support those multiple models. Maybe they’ll converge someday in the future,
but as of right now, I

think they all have value and we shouldn’t restrict or confine
or create definitions that limit the way that we meet user needs.

DR. COHN: Okay, Jeff, thank you. I have a couple of comments I
want to make. I think they’re sort of along the lines of yours, and we will
finish off in the next couple of minutes because I think we have people –
oh, you have a conference call, okay –

But I think that you made a number of comments, which I sort of
agree with, about the fact that PHRs have not gone to single model.

Of course, EHRs haven’t gone to a single model, either, so it
may be unrealistic to expect a frontier area to be more standardized than an
area that we’ve all been playing around with for 15 or 20 years.

But I think there’s a responsibility that others commented on
that we need to have ways to accurately describe what it is we’re talking
about, and I think we continue to sort of fall over ourselves trying to figure
out what exactly we mean when we use these terms and whether they’re PHRs, PHR
systems. Is in out mind, appointments a part of a PHR or is it a module? You
can go on and on and on.

And I don’t know the answer to it. I know a lot of these pieces
are valuable; that’s why I tend to think of things as being modular.

But we need to somehow have a way to uniformly describe them so
that when we say something, we know what we mean. And I think Stan made that
point.

The other piece that I sort of found myself speculating and
wondering about may get back to really the charge of the Workgroup in
relationship to this activity. I have to say that I apologize, but I’m not
exactly clear what that is.

And if on the one hand it is to come up with interoperability
standards, well, that’s one charge relating to PHR.

On the other hand – and once again, I guess I tend to be
reminded, for example, about David Brailer and others — I mean he’s a
physician but he’s also an economist and he’s also very well aware of the price
of things and doesn’t want to see things spent where they don’t need to be
spent.

And one of the things that I’ve been listening to today has
been sort of the issue of business cases, like what is the business case that
would drive something in this area?

And indeed, it’s probably very appropriate that our first panel
tomorrow, and only one, is on business case and business issues related it, but
it seems to me that if we can posit something that really looks like that
there’s a very strong business case for it, then one of the things that we
might do, which is completely aside from interoperability standards or maybe
will drive the interoperability discussion, is that there’s a business case for
something – it deserves and we should be recommending that something like
that should be tested on a wider scale. And to make that happen and be
successful, we need those interoperability standards to support that activity.

And that’s obviously a different way to approach this, but at
least it grounds the discussion, as opposed to records for every purpose for
everyone.

I guess I don’t know what the right answer is here. I did sort
of, I think, hear in all of our conversation that at least for something that
is more – I hear patient appointments, probably there’s a business case no
matter where you stick it in, but I don’t know that that’s an area that we
would really want to focus on.

But if we’re talking about more full-featured personal health
records, patients that have multiple diseases, who are involved in chronic
care, maybe older a la CMS populations and all that, there might be a
population where there might actually be significant benefit from at least many
of the functionalities we’re talking about that might result in lower costs
health care and better quality of care to the CMS population.

And doing something like that might help tether and focus our
conversation.

Now, I’m not convinced that that’s all the case. I’m just sort
of saying, based on what I’ve heard today, based on previous conversations.

And obviously James and the VA population which while not
uniformly elderly, a lot of them are an older population, once again reinforces
that view that that is the population where there really might be the business
case and there might be the benefit for something like this.

Now, we can talk about that more tomorrow. And just once again
helps focus the conversation a little bit. And I just posit that.

I mean, there may be many other business cases and business
uses, and, Gene, I have you think about that also, but I’m sure at the end of
the day you sort of say, why bother? Which is what Peter would say also. And
there would have to be a reason.

MR. STEUERLE: My notion was that in the end, the ultimate
demand for something for the consumer has to be the consumer and the business
has to have the type of incentives to want to provide it. And I was trying to
think through that part, but I haven’t resolved it.

DR. COHN: Yes, and I guess the question is: If the business
case is for the payer. How does that translate into all of this stuff? And I
don’t have the answer to that. I don’t know.

DR. LUMPKIN: But, Simon –

DR. COHN: Yes, John?

DR. LUMPKIN: Let me just toss out that part of the difficulty
is that there needs to be a value judgment, and I think that’s going to be our
charge. Is there a value judgment that says that the electronic patient
dimension, the decisional support, all those things that Pat had in that sort
of jigsaw puzzle piece slide, if we determine that’s of value, the business
case for that may not exist in the current period.

But if we think that there is value to that, then the work that
we do as a full Committee needs to reflect our understanding that there may be
value and there may be a business case down the road, whether it’s two years,
five years, or whatever.

And that means that we may not be looking for specific
standards for personal health records but that our other work should make
accommodation so that we don’t close the door to personal health records
because we’ve made a value judgment.

DR. COHN: John, I think that’s a very good point. And once
again, it’s a question that gets back to what we decide as a Workgroup and what
our recommendations might look like.

Yes, Jeff, I think, has a comment.

MR. BLAIR: I kind of kept this one aside because I’m not
exactly sure exactly how we should do it, but it’s a concern.

And the concern goes back to the experience that I had when I
was with a major computer manufacturer for many years and when we would design
systems, we would focus in, just like we are today, very focused in, on what
are the user requirements?

What are the use cases?

How do you wind up technologically supporting that?

And very often, you’d be halfway down the road, sometimes all
the way down the road, to the architecture or the systems design, and then
you’d wind up saying, okay, we have to consider privacy and security as well.
And in many cases, that meant it was a retrofit and it wasn’t done well.

And so one of the things that I think we should examine, talk
about, think about, is we’ve segmented the privacy.

On the NCVHS, we have privacy as a separate Subcommittee. And
maybe we still have to keep it a separate Subcommittee because there’s separate
legal skills and there’s other issues and maybe the only way you could get
things done that way.

But I am concerned that if privacy is not part of the initial
design of the architecture for the National Health Information Infrastructure
and part of the design for personal health records from the very beginning, if
we don’t have a good idea of where our basic boundaries and values are for
privacy at the beginning, I am concerned that we will not be able to meet
public expectations because the design might be halfway down the road before we
figure it out.

DR. COHN: Jeff, actually let me try to respond to that. I
actually fully agree with what you’re saying, though I might take it a slightly
different way.

I think we previously have suggested that you rejoin the
Privacy and Confidentiality Subcommittee –

[Laughter.]

DR. COHN: — and both John Paul and I were observing that this
is actually part of the topic of next week’s hearings, so –

MR. BLAIR: I’ll be there.

DR. COHN: You’ll be there? Okay. Tuesday and Wednesday and I
will be there. And as my wife would say, no good deed goes unpunished.

DR. COHN: Yes, exactly.

DR. LUMPKIN: And we would also like to point out that we do
have a model for privacy. We have the diabetes care kit sitting on top of the
dog carrier.

MR. BLAIR: John, could you repeat your comments? There was
some other –

DR. LUMPKIN: We have a model for privacy with the personal
health records which was in Patti’s presentation of the diabetes care kit
sitting on top of the dog carrier.

PARTICIPANT: The Rottweiler security system.

DR. COHN: Well spoken, John. And Jeff, I may have to rescind
what I said about that hearing schedule. It’s February for those topics.

MS. FYFFE: February and March.

DR. COHN: Is it February and March? Okay. So, my apologies.
It’s next month, rather than this month.

But I guess my hope would be that at the very least, some of
that would help inform this work as well, John, you commented that alert dogs
do provide another level of security.

Anyway, any final comments, John? Do you have any closing
comments? We’re running a couple of minutes late and I do want to let everyone
one go, including yourself.

DR. LUMPKIN: Virtually see everyone tomorrow, I guess.

DR. COHN: Yes, that’s right. Well, John, I hope you start
feeling better. We will adjourn in just a second and reconvene tomorrow at 9
a.m. The meeting will adjourn by 12 noon tomorrow. We’ll have one panel and
then further discussion. Well, thanks, everyone.

Okay. With that, we adjourn, and thank you very much.

[Meeting adjourned at 5:13 p.m.]