[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

National Health Information Infrastructure Workgroup

July 27, 2005

Hubert H. Humphrey Building
Room 800
200 Independence Avenue, S.W.
Washington, D.C. 20001

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


P R O C E E D I N G S [11:10 a.m.]

Agenda Item: Welcome and Introductions – Dr. Cohn

DR. COHN: 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 national committee is the main public advisory committee to the
U.S. Department of Health and Human Services on national health information

I am Simon Cohn, I’m the associate executive director for health
information policy for Kaiser Permanente and chair of the committee as well as
this workgroup.

I want to welcome committee members here, HHS staff and others. As I
understand it we are being recorded but we are not being broadcast on the
internet however I do still want to remind everyone to speak clearly and into
the microphone so we have a transcript of these hearings, or this session.

With that let’s now have introductions around the table and then around the
room. For those on the national committee I would ask if you have any conflicts
of interest related to any of the issues coming before us today would you so
please publicly indicate during your introduction and then from there we will
sort of talk about the agenda. Jeff?

MR. BLAIR: Jeff Blair, vice president, Medical Records Institute, member of
the NHII Workgroup.

DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention,
staff to the workgroup and liaison to the full committee.

DR. HUFF: Stan Huff with Intermountain Health Care and the University of
Utah in Salt Lake City, a member of the committee and subcommittee, and I don’t
think I have any conflict with any of the discussion that we’ll have today.

MR. HOUSTON: John Houston with the University of Pittsburgh Medical Center,
I’m a member of the committee as well as this workgroup and I don’t believe
that I have any conflicts.

MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics,
CDC, staff to the workgroup.

MS. FISCHETTI: Linda Fischetti, Veterans Health Administration, staff to
the workgroup, no conflicts.

DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality, staff to the workgroup.

MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, member
of the committee and workgroup.

DR. DEERING: Mary Jo Deering, National Cancer Institute, lead staff to the

DR. COHN: I want to welcome everyone. There are basically two agenda items
that we have for today and basically as long as we go into tomorrow. The first
agenda item which is really I think the purpose of the meeting is to take a
look at the current draft letter to the Secretary on personal health records.
Oh, I’m sorry, please, as I jump off into the agenda already let’s do the
introductions. My apology, I think we’ve been to too many meetings today

MR. BONNETT(?): Ian Bonnett with Deloite Consulting.

MS. FRASIER: Judy Frasier, American Optometric Association.

MR. FUR(?): Rich Fur, Safe Biopharma Association.

MS. WILLIE(?): Shelly Willie, RxHub.

MR. DECARLO: Mike Decarlo, Blue Cross/Blue Shield Association.

DR. WARREN: Judy Warren, University of Kansas School of Nursing.

MS. ZIGMAN-LUKE: Marilyn Zigman-Luke, America’s Health Insurance Plans.

DR. BICKFORD: Carol Bickford, American Nurses Association.

DR. COHN: Well my apologies. Anyway, let’s talk about the agenda for today
and for tomorrow. We really have effectively two items and really the important
one is reviewing the draft letter report to the Secretary on personal health
records which we’ll begin in a minute. I do want to sort of emphasize I think
it’s both timely as well as important that we try to come to resolution on this
letter today and/or tomorrow morning, to the point that we’re comfortable with
it and that we can then send it to the Privacy Subcommittee for further review
and hopefully out to the full committee for consideration for the September

Certainly I think there have been a lot of events including the release by
CMS of an RFI on personal health records that just speak of the timeliness of
this letter and the fact that I think it would be very helpful and useful for
the September timeframe so I think we should be trying to drive to that
September date obviously not in any way commenting on any of our
recommendations or otherwise but once again, hopefully we can do this today and
then to tomorrow if we have to, we may very well need a conference call further
into August if there are changes or suggestions or otherwise that we get back
from people to do sort of final wordsmithing or whatever but it would be
helpful if we could sort of come to that conclusion.

Now the other piece is really this issue of discussion of the workgroups
work plan and next steps, and I think we’ll hopefully after we’re done with
this letter be able to reflect a little bit about what we want to see sort of
going forward, sort of aid in our planning for fiscal year 2006 which as you
know starts the beginning of October, so it will time to reflect on sort of
what’s next with the workgroup.

Agenda Item: Discussion of DRAFT Letter to the Secretary
on Personal Health Records – Workgroup

Now I would ask the workgroup, are there other issues that we’re missing
here that we need to bring up today? Okay, well what I’m going to suggest and
this is just based on our last conference is that we start pretty much where we
left off in our last review and the idea will be is that we will sort of finish
those sections that we had not looked at in our last conference call and then
start at the beginning and sort of work our way through. And I’m obviously
hoping in all of this that Mary Jo is going to take very good notes of whatever
modifications that we are making so that you’ll be able to see them in real
time or close to real time, we may see further versions coming out later today
or tomorrow depending on what’s sort of going on with the timeframes. Okay?

DR. DEERING: Can I ask you a mechanical question? I’m looking for Janine
right now, I’m wondering do staff, do members and staff have in front of them a
non-track change hard copy? Then I need to ask, is Janine in the room? I need
to ask for a copy of that version just so we can be on the same page because I
am working from the track changes version that I sent out.

PARTICIPANT: Is it in your folder?

DR. DEERING: No, nothing was in, it was not in my folder, it was handed out
after the fact, so if anybody, maybe if there’s a copy lying around next to
somebody that got put down —

Okay, so I won’t mention a page number then but just again for the record
where it was that we left off was on federal roles in PHR systems, internal and
external, and again I don’t know what page number —

DR. COHN: I think I can tell people what page number we’re dealing with. I
think we finish this and sort of start over again and sort of look at things
and deal with whatever additions, wordsmithing, I guess the infinite loop.

So anyway we are starting at this point on something called federal roles in
PHR systems, internal and external, and I guess I’d open the floor up for
whatever discussion, questions, I have some comments but I’m certainly willing
to start with others. Actually everybody is really happy with this section.

Well, let me just ask a question because I’m looking at the third paragraph
here and I’m actually wondering, sort of look and think about the issues of
incentives, rewards, and then going into the recommendation about incentives
and the recommendation incentives is certainly a very sort of high level
recommendation and I guess I’m wondering are we comfortable with this one, is
this really where we want to go? And I guess I’m just sort of bringing up the
issue is really what we’re talking about incentives and incentives to who to
use PHR systems for what ends and I guess as I was looking at it I guess that
was sort of the question that I was sort of coming up with. I’m not sure that,
I mean we can sort of thinking about the recommendation but I found myself sort
of going, I’m struggling with exactly what incentives we’re thinking about in
terms of EHR systems which are sort of vague and to be determined and I’m
trying to think about what it is we may want to frame here. John Paul and then
Bob, Bob are you first? Okay.

MR. HUNGATE: The thing that I felt ought to be at least maybe talked about
here is that the federal government is one of the largest employers in the
country and employers in many places are leading this adoption of personal
health records. This tends to address the federal agency in terms of their
customers, not in terms of their employees, and I wonder if we should have
something about that part of the personal health record evolution.

DR. COHN: So you’re saying does this cover, I mean the government has a
couple of roles, it has a role of policy maker, it has a role as payer, as
insurer of beneficiaries, and then it has a role as an employer. Are you saying
that this only relates to the first one or is it the first and second?

MR. HUNGATE: It seems to me that it tends to pertain to the first and second
and not the third in terms of the language.

DR. COHN: Okay, because I would even question whether it relates to the
second, which was I think part of the question I was referencing. John, are you
on another issue or this particular issue?

MR. HOUSTON: No, I’m on another issue.

DR. COHN: Okay, Linda, is this a follow-up to this one?

MS. FISCHETTI: I just wanted a point of clarification that if we talk about
roles we should probably pull them from the CMS document and I would want to
see the role of provider included as well, I think the beginning here talks
about the federal government as provider when it mentions the DOD and VA

DR. COHN: Okay, so four roles, I mean are we, are we talking about really
distinct roles?

MR. HUNGATE: I think so, and it would seem to me that some organization of
the information to reflect those roles might be helpful in communicating the

DR. DEERING: If I may just jump in on this issue I would ask then what the
sense was of the members and staff to do with that observation, do we simply
want to observe that they have four roles or are you implying that then we’ll
go down the path of identifying specific PHR related activities for
recommendations? Or at least potential, or short of a recommendation do you
want the text to tease out potential PHR related activities for each of those
roles? I mean simply to observe that the government has four roles seems to me
doesn’t add anything to this section.

DR. COHN: Well I guess at least, I mean I’m not sure that I’ve thought
through this well enough to know that there’s, the answer to your question. It
did occur to me that given that since last week there’s an RFI from CMS, that’s
I mean we may want to compliment CMS on their role recognizing that that’s sort
of that beneficiary space, sort of further explore this area which is a
recommendation relating to HHS roles as an insurer. That was about as far as I
had gotten actually and Bob obviously had brought up the employer issue. John
Paul, did you have a comment on this one?

MR. HOUSTON: Not on this particular aspect.

MR. HUNGATE: Where I think I would be inclined to move it would be to say
that the activities that take place like at CMS with a program to start a
personal health record should be parallel and made available to employees, in
other words —

DR. COHN: What was the recommendation again? I just didn’t hear you, I’m

MR. HUNGATE: That the effort to pilot and pursue personal health records at
CMS could be paralleled by an activity for employees, federal employees, that
we don’t just need to learn in beneficiaries that are funded by the government,
we could also learn with employees of the government.

DR. COHN: Linda?

MS. FISCHETTI: I think what I’m hearing is that there are multiple
stakeholder roles in industry and the federal government nears many of those
roles, purchaser of health care benefits, employer as well as provider, and
Cynthia has already gone, in her document has already listed others that we
haven’t addressed here, she just reminded me researcher, public health
educator. And I think if I’m just to paraphrase your recommendation probably
we’re talking about using those stakeholder roles that the federal government
has to then push adoption, push use, push prevalence of PHRs.

DR. DEERING: I guess I would only jump in and say that perhaps Cynthia
should, this section originally was based largely on both the report that we
received and of course we’ve had testimony from VA and other providers in the
past so I tried to sort of stick to what I knew that we had had in front of us
without necessarily extrapolating so far. So again, it’s more like question to
staff and members whether they want us to really expand this and go into a
variety of all the areas that we actually here discuss which are now being
brought forward. This was quite narrow as you can see —

DR. COHN: I guess I’m getting a little worried given our timeframe that if
we start expanding this too far we’re not going to make it to the September
landing. Cynthia?

DR. BAUR: I’m just going to say that maybe the recommendation then focuses
on encouraging the Secretary to review the documents that have already been
prepared that discuss role rather then talking about individual roles and that
it could be to encourage the Secretary to consider how various sort of
programmatic and research activities could then operationalize those roles, I
mean so then you’re not endorsing anything specifically around any single role
but you’re encouraging the department to look across all those roles and it’s
not saying doing something specifically in relation to your role as provider,
because I mean I think that’s what CMS is trying to figure out, right, they
don’t really know what their role is, they’re soliciting input, testimony,
opinions, etc., on how to define that role. So if the workgroup were to come up
with some specific recommendations that kind of I guess sort of jumps in the
middle of their process as well. So it could be the recommendation really says
this work has already been done examining these roles, there are some
documents, there are RFIs, other things looking at what these roles are,
encouraging in the department to review those materials and begin to elaborate
on what their contribution will be in each of those areas.

DR. COHN: That’s not a bad way of describing it, the only thing at all that
I’m sort of struggling with is obviously I haven’t reviewed your document so I
don’t know exactly what it says —

DR. BAUR: I think it was distributed to the workgroup I thought.

DR. COHN: Was it?

DR. BAUR: If not I mean we can certainly —

DR. DEERING: And has it gone to the Secretary now?

DR. BAUR: It had not, I mean what I had done was in addition to the people
who had participated in it and the workgroup members then I also had to vet it
with some other offices that had not been involved in the development of it and
I have not heard from anybody so at this point I’m assuming that it’s good to
go. But internally within OPHS there hasn’t been any decision, I think they
wanted to engage Dr. Brailer’s office in some discussions. So no it has not
actually gone to the Secretary per se.

DR. COHN: And I guess maybe, I guess I’m only thinking, as I said and I will
apologize if I’m the only one who hasn’t reviewed it, I’m sure, knowing who you
are I’m sure it’s a great document but I was just sort of thinking about, I
guess I was just trying to think of some way where we could sort of maybe a
little more obliquely sort of, I mean I think the idea, I think the idea of an
RFI for example from CMS is a really good idea, I think we want to encourage
HHS to explore more fully how it could derive value from implementation which I
think is exactly what you’re saying and you’ve probably said it better then I
did, and the idea that we sort of at that point we observe that there are a
number of documents that have been produced internally at HHS that provide
further insight on all of this, I mean maybe something along that line which I
think is almost exactly what you said but just sort of, I’m not exactly sure
what you guys have recommended in your document.

DR. BAUR: And we weren’t looking for specific recommendations, I mean they
did make some recommendations but those recommendations haven’t been endorsed
by anybody so that’s why I would also be hesitant to say yes you should come
out and say this document in and of itself, it should reference sort of
generally that there’s a lot of exploratory work on what roles are, there are
these different things that could be reviewed and just sort of encouraging the
process of engaging on these different roles and figuring out what our
contribution would be in each area. Then you don’t have to endorse a specific

DR. COHN: Yeah, thank you, you’re being very helpful. Mary Jo?

DR. DEERING: For what it’s worth I just wanted to say that the original
first sentence in this paragraph came from sort of your summary slide of the
federal role, so to the extent that at a very high level it teased out what I
saw from your presentation, it seemed like a more succinct way of doing it and
that was, Jeff wanted me to read it but he’s probably read it before. So what
I’m hearing we see the CMS RFI as a good illustration, good model of the way
that the federal government can further define(?) its roles, that we think that
they should look more fully across all their roles at opportunities for them
to, I think your words were drive implementation, etc., there were a number of
other documents that they might look at as they considered what those options
were —

DR. COHN: I’m not sure drive implementation is the right verb here, I think
it’s really, it’s something else, it’s a —

MR. HUNGATE: Explore the benefits.

DR. COHN: Explore the benefits, yes, maybe explore the benefits. Are people
okay so far? I mean I don’t want to go off too far on a tangent on this one.
I’ve a feeling we’re going to see another copy of this before all is said and
done. Michael?

DR. FITZMAURICE: I’m looking at the recommendation the federal government
should address issues related to underserved populations. Address issues sounds
maybe not as strong as it might be, should, I guess what we want to do is
improve their health by improving access to internet connectivity so should
examine that relationship and undertake actions to improve their health
including access to internet connectivity, I’m not sure exactly how to say what
I’m thinking, it’s the address issues, should identify and resolve issues. And
one of the issues is that they can’t get access to internet connectivity. Maybe
they also can’t get access to a personal health record, something that will
hold a personal health record, they don’t have a computer, they don’t have a

DR. COHN: Okay, so basically you’re saying the federal government should
identify and address issues related to underserved populations including but
not limited to access to internet connectivity.

DR. FITZMAURICE: Maybe I would add some more things because it’s not just,
alright, here you go, here’s a cable line, they don’t have anything to plug
into it, they don’t have anything to carry around with them to remind them.
There’s a whole set of technologies to which they don’t have access to.

DR. DEERING: Perhaps instead of just the connectivity, I think the intention
there was to embrace all technology issues and that was sort of a shorthand but
what I’m hearing you say is that it’s not in fact viewed as a shorthand, it’s
viewed as too specific, so including access to technology, including technical
access issues, or technology access issues?

DR. FITZMAURICE: I don’t know if you want to call it health information
technology that does something for them, that can improve their health.

DR. DEERING: But I think we don’t also want to lose the underlying
structural connectivity issues, so it’s not just we want them to get access to
health information, it’s that in order to get there there’s some structural —

DR. FITZMAURICE: — technology but we’ll give them the information, maybe
record how well they’re doing —

DR. DEERING: How about sort of technology access issues that may limit their
ability to benefit from —

DR. FITZMAURICE: — access and use, because then that leads into your health
literacy which is good.

DR. COHN: Are we okay? So what do we have there?

DR. DEERING: The federal government should identify and address issues
related to underserved populations including technology, access and use. I
could add the phrase including technology access and use barriers that could
limit their ability to benefit from these technologies.

DR. FITZMAURICE: Or instead of issues related to underserved populations,
issues related to these three technology measures as they pertain to
underserved populations.

DR. DEERING: You lost me.

DR. FITZMAURICE: I’m trying to remember the sentence that you read.

DR. DEERING: It said should identify and address issues related to
underserved populations, including technology access and use.

DR. FITZMAURICE: Issues related to the use by underserved populations of it
would seem to be stronger and more focused.

DR. DEERING: Related to the use of technology access and use by underserved

MR. BLAIR: [Comment off microphone.]

DR. DEERING: The federal government should identify and address issues
related to technology access and use by underserved populations.

DR. COHN: Is that okay, Jeff? Okay, now I want to bring up an issue and I’m
trying to think of how to describe this one, and I just once again bring it up
as sort of an issue along with, and whether this is an issue we want to get
into here or whether it’s been covered other places because we sort of talk
about it in a number of areas including our privacy section and whatever but I
was actually mulling about things and obviously this whole thing is about the
federal role so we have a section called the federal role. The question really
is is does the government have a role in protecting the consumer in this new
marketplace given that there’s sort of what we’ve seen is lack of regulation in
this area, there may be issues relating to, I guess what I’m mostly thinking is
there may be some concern about market failure related to misrepresentations,
etc., I mean this may be way too far because we haven’t seen an example of all
this. But I think the concern I have is that a market failure in this area may
actually impact the whole of the HIT initiative, EHR implementations and
everything else, in other words if something happens, a major security or
privacy breach, falsification of medication advice, etc., etc.

MR. HOUSTON: Isn’t that already covered in the other sections?

DR. COHN: That’s what I’m wondering, I’m wondering if we’re, we’re sort of
talking about it somewhat in privacy where we talk about secondary uses of data
and obviously this a much stronger statement and I’m not sure that we really,
this may be too strong of a statement but I think it’s just a little bit of a
concern and once again this may be too strong of a statement for this place or

DR. DEERING: We could perhaps follow sort of the construction that we had
used for those other roles of the federal government and we could possibly
include its standard, its traditional role related to consumer protections and
again not get too specific about it but be calling on it to look at its
traditional roles related to consumer protections outside of other areas
covered in this letter report and see whether there are appropriate issues that
need to be addressed for safeguarding personal health records.

MR. HOUSTON: I’m confused, I’m hearing two things here, I’m sort of hearing

DR. DEERING: Maybe I can pick up right on what Simon said.

MR. HOUSTON: Maybe I just processed what Simon said a little bit differently

DR. COHN: You’re a lawyer so you have the right to do that, you probably
didn’t even understand what I said.

MR. HOUSTON: I sort of sense there’s the issue of security and privacy and
the federal role on that which I think we should probably cover in the context
of the headings of security and privacy but I also thought I heard from Simon
this concept that what happens in the market if, or maybe I inferred from
Simon’s comments, what happens in the market if a company that’s hosting PHRs,
especially in an untethered state, should happen to go away, what happens if my
health online or whatever, let’s just name a fictitious website that allows you
to store personal health record information, what happens if it no longer is
available and the consumer has invested years of their time putting their
personal health record information into these websites. Now if you go back and
you look at medical records information in the EHR or in the paper sense most,
I think probably all states probably have some type of laws that dictate the
provider’s obligation to maintain, to steward that data for some period of time
and what they would do if they should go out of business. I know in
Pennsylvania you have to have some type of custodian of the record in order, in
the event that a hospital should happen to go under. Am I reading something
different from that?

DR. COHN: You’re going in a different place then I had thought of but
certainly not an inappropriate leap, I mean I hadn’t gotten that specific, I
was actually just sort of concerned about whatever major failure in the
marketplace and I think —

MR. HOUSTON: Not even major, but going away meaning a failure in the

DR. COHN: Well, that would be one failure, I mean I think basically some
sort of a major fraudulent misrepresentation which of course should be covered
by FTC rules, but maybe not depending on exactly what it looks like. I was just
along the lines of concern that, I mean you’re right, it may be them going away
or whatever, might not just impact, you might wind up just sort of poisoning
the marketplace and might not only poison PHR marketplaces, might also
negatively impact electronic health record implementations and all of this
stuff and it was really sort of that, sort of the spreading poison sort of view
of the world here. And once again, I’m not sure that I mean it quite that
strongly but I’m just trying to think of, there is sort of a, this is a
federalist policy role —

MR. HOUSTON: There are all those things that are encompassed under the
privacy and the security rule which, understanding that those two rules don’t
necessarily apply to PHRs, unless it was part of an EHR that you could argue
that covered entity then had the obligation. So I guess a lot of the risks that
we have are things that I think sort of butt up against sort of the question is
how, do you extend HIPAA to cover PHRs or do you have other types of federal
type of rules similar to HIPAA that would govern free standing PHRs, the
untethered ones, to allow consumers some level of comfort that there’s somebody
looking out for their rights. And I think most of the rights you’re describing
really come down to privacy and security, privacy rights and security
obligations. Again, I’m not thinking of extending HIPAA but I just —

DR. COHN: And I don’t want to go too far out here either.

MR. BLAIR: And maybe you already have it in here but I think there was a
recommendation about the expansion of the HIPAA privacy regs to cover PHR
domains and that was something that I felt uncomfortable with —

MR. HOUSTON: It’s not that I do feel comfortable with it, I’m just sort of
using it as my analogy is to types of protections.

MR. BLAIR: Well maybe it’s because I tend to be a minimalist, my thought was
that with the emerging personal health record marketplace being so diverse,
being so unknown, and in some cases the secondary use of personal health record
information being very helpful and appropriate and having value and that it’s
kind of too early for me to be able to sort out and make a construct or a
matrix as to which should be regulated in which way. From a minimalist
standpoint my thought was as long as we require full disclosure to the patient
or consumer then we would allow that flexibility and not try to constrain it or
define it in advance and let the market sort itself out before we go any
further in terms of privacy requirements with personal health records.

DR. COHN: Okay, and I was trying not to constrain this to the privacy
conversation because there’s all other sorts of failures that can occur that
aren’t privacy failures, I mean there’s fraud, misrepresentations, which I
think fall outside of privacy. And I guess the question, as I’m talking about
this one I may be persuading myself that, and Bob you may have further
suggestions, but I’m wondering if maybe what we really need to do is in here
someplace towards the end is note that this is a very early marketplace, things
are still, Jeff as you commented, still in the midst of evolution. The NCVHS
for its part will continue to monitor the situation to see if there’s need for
additional regulation above and beyond other recommendations, and the question
at that point is do we also want to recommend that the secretary also monitor,
I guess I’m trying to think, monitor the situation or whatever, John Paul since
you’re the lawyer and then Bob.

MR. HOUSTON: The happy medium may be we make the recommendation that it
monitors in some way, monitors the situation but specifically give
recommendations as to monitor what. Or at least categories of the things to
monitor because, Bob is shaking his head no. We want to give sort of a thought
of where we think the issues are going to be because we’re going to hear from,
we are going to hear through the Privacy Subcommittee some of the stuff that’s
going on on the NHIN side and I think there is some portability in that regard
and I think that, I think if you were to ask Mark Mark would say that there are
some very clear things that we need to be thinking of with regards to,
specifically, specifically privacy but I think he’d probably argue that there
are some very specific things we should be at least looking at, watching.

DR. COHN: Bob, you’ve been very patient.

MR. HUNGATE: My comment related to the need to pay attention to the meshing
of market behavior and regulatory activity, this is a public and private thing
that’s going forward and you need standards in order to underpin validity of
information and some of those are going to start in market driven activities.
So somehow mentioning the early state of the market but saying attention, when
you say monitor I worry because that feels like collecting a lot of data and
then I say which data and it runs down. So I’m groping a little bit but it
seems to me that part of the challenge in getting the market to deliver what
you want it to do means a meshing with other activity and stimulating that to
occur, the voluntary standards activity within developers.

DR. COHN: Well, we have an interoperability section so I’m not sure —

MR. HUNGATE: Well, but it’s more perhaps then interoperability, it’s
standards of performance, it’s the kinds of things that relate to financial
security, the protection of information if they go bankrupt, it’s those things
that go beyond that I think you were alluding to. At least that’s what I

DR. COHN: Mary Jo, I’m sorry, did you, Cynthia, do you have a question?

DR. BAUR: I just wanted to endorse your initial impulse, Simon, because I
think the vendors themselves have been talking about this for several years, I
mean I was in a group that Peter Wageman(?) convened under ASTM about four or
five years ago when the vendors were sitting around the table talking about
M&A and bankruptcy and all these other things. And I do think that your
initial impulse about framing this in terms of what is the role around consumer
protection is a good one and it’s not, I think I would change the word from
monitor to perhaps review and identify gaps with other relevant federal
entities because then you’re right, it might be FTC, it might be other parts,
it might be SEC, I mean who knows, I mean there could be other federal entities
that get involved in some of these issues and I think you’re right, your
instincts are right that just limiting it to privacy and security issues is
going to miss a whole huge area of activity if this area gets robust. And I
think asking now for the Secretary to be a little bit proactive in reviewing
and identifying gaps is not inappropriate given that the marketplace has been
thinking about these issues for several years.

Also in terms of like the EURAC(?) accreditation standards for health
websites, they’re dealing with these issues already, and the companies are
involved in drafting those standards of thinking about this, so I don’t think
it’s too early.

DR. COHN: John Paul?

MR. HOUSTON: To dovetail what Cynthia just said, I think it’s also probably
important if we say this, that we make it clear that we aren’t, we make it very
clear that we aren’t just concerned about privacy and security then because I
think some people may read some of this and just say oh this is a privacy and
security issue and try to shoehorn all the other issues into that box and
expect that there’s an easy answer maybe, amending HIPAA or doing something, I
don’t think it’s that easy and there are a lot of, and again, I also have a
concern in sort of sound like a broken record here that to the extent that we
have freestanding PHRs and WebMDs and other companies that want, or even
organizations, cancer organizations, things like that, who might want to
provide these types of things to their consumers and constituents who aren’t,
again, under the umbrella of HIPAA they don’t fall under HIPAA.

I think it’s probably also, there’s probably a fairly strong impact on their
bottom line and their ability to function if all of a sudden we try to extend
federal laws to cover them, they might make it almost to the point where they
can’t afford to continue to function in that capacity which might have an
enormous harm to their constituents. I’m thinking of the chronic disease area
where you again you might find that chronic disease, having some type of
organization for people that have that chronic condition and they might then
provide PHRs for their use in order to monitor their condition and get
notification of new therapies and things like that. And I think at the same
time we do need to be careful that we don’t put a structure in place that puts
such rigid controls on them that they say geez, I can’t economically function,
I can’t provide these services because it’s going to cost me a lot of money.
Again, I’m sort of throwing out things, I’m not sure how they even fit together
here but I guess that is a concern that I would have also about how we
structure this recommendation.

DR. DEERING: Could I say what I think I’ve heard here —

MR. HOUSTON: I’m not even sure what I said so —

DR. DEERING: If I were to put it together and let me jump to the bottom line
which I’m not sure I’ve heard it stated as a formal recommendation yet, I’ve
heard it certainly at a minimum as something that should go into the text and
here’s what I think I’ve heard in terms of sort of the sequence of the logic.
This is a new and emerging market, statement one. Statement two, this happens
to be a market that has great importance for the improvement of the quality and
level of health and health care in the United States and in the government’s
HIT programs and therefore there is a lot of reasons to be mindful of this as
an emerging market. Given that as an emerging market the federal government
should be reviewing, identifying, assessing, consumer and market related issues
that would be appropriate given the nature and evolution and importance of this
sector, possibly in conjunction with other federal agencies that may already
have missions and responsibilities in that area without necessarily presuming
any need for additional public oversight and regulation.

MR. HOUSTON: And I would just simply say and these are in addition to
consumer concerns over privacy, so that you’d make clear that there’s that
carve out.

DR. DEERING: That’s what I thought I heard. Is that what I heard? I didn’t
get to write down what I said.

MR. HUNGATE: I think it’s close to what I heard.

DR. COHN: Jeff, did you have a comment?

MR. BLAIR: I’m not sure that I’m in perfect sync and I’m not sure where we,
so maybe you have this covered somewhere else in the letter in which case I
apologize. My thought that there was a minimal level where we’re winding up
saying we don’t want to over regulate, we don’t want to recommend things
prematurely, the one thing that does seem to be appropriate is to just make
sure that there’s full disclosure and as long as there’s full disclosure that
allows the consumer patient to make the choice until we know more.

MR. HOUSTON: But is full disclosure, you’re saying that should be a
federally imposed obligation or something —

MR. BLAIR: I tell you I don’t know, I mean when we had a previous discussion
on this my thought was if there’s some way to have that happen sooner rather
then later I would go for that so I’m not sure the best way to encourage the
marketplace to have full disclosure on the secondary uses, whatever you decide
is the best way.

DR. COHN: And we actually already have recommendations on this in privacy,
this is a privacy issue. No, that’s fine, that’s what happens when you start in
the middle of the document, actually towards the end of the document.

I guess we can look at the paragraph and see how it all looks, I mean I
guess the only other piece that I would have on this one is just the
observation is is that, and once again I think the additional piece of
importance here is it isn’t just that this is a developing market, it’s that as
far as the consumer is concerned this flows sort of along the same lines as
other HIT technology initiatives going on, electronic health records,
everything else, and obviously a major market failure in all of this would
likely sort of set back all of those efforts as well as sort of undermine
public trust in probably all of it. And I think the stuff that Jeff has said
repeatedly —

MR. BLAIR: I’m sorry, broken record.

DR. COHN: No, that’s fine, I just wanted to just sort of tie in, I wasn’t
planning to extend it any further, I just wanted to tie in that issue that
people are probably not, if there’s for whatever reason a big failure on PHRs
they’re not going to be differentiating in their minds from EHRs.

DR. DEERING: I think that would certainly belong up in the importance and
why they need to do it.

MR. HOUSTON: I think people will, again, it depends on what, how the PHR is
structured and whether it’s tethered or untethered, how people associate it.
Again, my biggest concern is some national, some large company out there that
has a web based PHR that they’re pushing to consumers that all of a sudden goes
away from some period of time and there’s outcry that it’s no longer available
and how do I get my information out of it, what happens to my information.
You’ve heard these in a different space though, what was the company that went
out of a business, it was a web, online retailer, that even though their notice
of privacy practices we will not sell your information the bankruptcy court
viewed that initially as a marketable asset, the data, the customer data, and
there was an attempt to sell that data in a liquidation and only through the
outcry of consumers saying whoa, that wasn’t what we signed on for, it wasn’t
supposed to be sold, did they actually back off and decide that that data
wasn’t going to be sold as part of a liquidation. So I think there are some
other examples in other spaces of how we do need to be concerned about what
happens to that data in some type of catastrophic event, some type of
liquidation event or something like that.

DR. BAUR: I was going to say, are you sort of raising this then almost as
requiring like a risk analysis? Because I’m thinking like for example if you
invest in, buy stocks in a company or you put your money in a financial
institution of some sort, I mean to just point there is disclosure about what
some of the risks are with that but every statement is very clear, there is no
guarantee you will necessarily get your money back, etc. But I mean in this
case is that sort of what we’re saying, is like when you give your health
information to someone then you’re sort of kind of putting that information, I
mean there is a certain amount of trust that’s required there but are you also
then, are we saying that if it’s just to Jeff’s point a matter of disclosure
you’re essentially then saying that your health information is something that
could be at risk if this company goes through any of these processes. So I’m
wondering what is, is this sort of a whole area related to risk analysis that
we haven’t even discussed.

MR. HOUSTON: That’s a good point. My thoughts off the top of my heard are
two fold, one is that, and again, this would require some type of legislation
which I’m not sure we want to get into but can you argue that, can we recommend
or suggest that information in PHRs once classified as such by a vendor,
whether it be tethered or untethered or whatever form, that once classified as
such should that company cease to operate that business that that data cannot
be sold or any way disseminated unless you have the authorization of the
consumer or the patient.

That’s one approach and the other thing I think is important too is that
this is a recommendation but I’m not sure how you recommend it but you say okay
that where you have some type of online PHR that the vendor also needs to
provide at no charge to its consumers a method for them to extract their data
from the PHR in some type of format, whether it be in excel spreadsheet or in
something that is then portable that somebody could take and whether they are
able to integrate it into another PHR or what they can at least extract it and
say I want this deleted from your database.

Now that would give confidence in two ways, one if they found out that my
health record online was going out of business, they could say okay, fine, I
have an opportunity to go in and yes I can hit the download button and it will
automatically download something in an excel spreadsheet format of all my data
that’s in their database so I at least have the ability then to have an
electronic image of that data for further use —

DR. COHN: I’m hearing what you’re saying, I’m just sort of, I’m sort of
reminded that A, that obviously we observe there are really no interoperability
standards so I guess people could print out print images, I don’t know if
you’re going towards —

MR. HOUSTON: This is not interoperability as much as it is when you go from
computer system to another, whether you have a clinical system or a financial
system you have to do a data export and a data import, it’s like when you go
online with, I do my online banking, there’s a button on my bank’s website that
says download your information to Quicken, or download your information to an
excel spreadsheet and I do that regularly. My point is, my only point is that
if consumers are concerned about their data going away a recommendation might
be that there needs to be some type of import/export capability. Not a
standards based solution solely for the purpose of interoperability but for
archival purposes that the consumer might have.

DR. COHN: Okay, well I’m hearing what you’re saying, I’m just trying to
think of whether this raises to the level of a recommendation. Also FDI
insurance is another analogy that one needs to consider. Steve, do you have a

DR. STEINDEL: Yes, Simon, I was concerned about going into this area when
you first brought it up when was it, about a half hour or 45 minutes ago and
now I’m even more concerned. We’re describing what might happen to an entity
that exists in an environment that we absolutely know nothing about because
we’ve already said that, PHRs take different forms and we don’t know what
they’re going to look like. We’re talking about preserving data and we’ve
already said we have no interoperability solutions to a PHR. And now we’re
talking about well what are we going to do when this entity dissolves which
doesn’t exist. I think we’re going into a little bit finer level of detail then
is needed in this particular letter. I think maybe some broad statements like
Mary Jo outlined in the text is appropriate, to alert the Secretary that this
is something we’re aware of. But going further then that I’m uncomfortable

DR. COHN: Well, I mean, what do others think? I mean I tend to think that we
are getting into a very fine level of granularity —

DR. HUFF: I agree, when you start saying and delete, I was kind of with you
and then they said and delete everything, then I started thinking about all of
the archive copies and back-up copies —

MR. HOUSTON: Well, maybe that was before, I thought that as soon as I said
it. I don’t think it’s an unreasonable to make an open recommendation that
there has to be consideration, some type of consideration regarding data in
systems in the event that —

DR. STEINDEL: I think a broad statement that we’re concerned about the
preservation of PHR record data over time.

MR. HOUSTON: That’s maybe a good way to couch it.

DR. STEINDEL: Yeah, and put it in the text.

MS. WILLIAMSON: I don’t know how it’s stated for the paper record, which you

MR. HOUSTON: Paper records are different. Let me say this, health records
information that are managed by providers, physician offices, hospitals, are
different, because typically there are state laws that mandate that that be
maintained for some period of time. So even if the entity goes away it has an
obligation typically through some type of custodian to maintain those records
in the event that somebody wants them. And that’s different here though.

MS. WILLIAMSON: Where I was going with the paper record thought was there is
the ability for someone to get access to that information and I think that’s
where the consistency needs to be. The patient, if someone invests that much
time in storing this data they should have the ability to get access and keep
that data and I think that it would be good to ensure the consumer that they
will have some protections, I tend to agree with you there.

DR. BAUR: I’m just confused though, did we want to get down into that level
of detail because I mean I think what Mary Jo read kind of would allow the kind
of review of the options that you guys are talking about without necessarily
saying we need to do this. So I got a little confused, I mean I heard Jeff say
that he thought it ought to be just stated merely as a disclosure issue but I
thought everybody else was actually pretty comfortable with the more general
thing that Mary Jo read had read so I’m a little confused now.

DR. COHN: Why don’t we ask Mary Jo to restate sort of what we have there?

DR. DEERING: Well first of all to take care of Jeff’s concern about full
disclosure as being explicitly stated as a minimum I heard that we are
comfortable that we’ve already taken care of that in the privacy section so
we’re not going to go into that.

The statement I originally read was that because this is a new and emerging
market in its importance for improving health and health care and the fact that
it is viewed by consumers as being in the same space as electronic health
records any major market failure could undermine trust in the whole HIT
endeavor, etc., for all of these and perhaps other reasons we suggest that the
federal government assess, and here’s where I’ll have to do some more
wordsmithing, but take a look at this as an emerging field and the potential
issues related to consumer protections that may be important given the
significance of this emerging field, possibly in conjunction with other
agencies that may have relative mandates in the field, that we are concerned
that there’s no presumption that regulation is needed, we certainly are
concerned not to overburden potentially valuable services.

I do think that there ought to be someplace to get the statement about
concern about the preservation of PHR data over time somewhere and I’m willing
to work on seeing where that seems to flow naturally because it sounds like
something that we all agree on, it’s just a question of where it goes. I’m
willing to try and fit that in somewhere if not particularly that block, to
find a home for it.

DR. COHN: Okay, so I guess the question is is are we generally okay with, I
mean I know we haven’t seen this in writing but are we okay with the section —

MR. HOUSTON: We’re still under the federal roles, correct?

DR. COHN: I was actually going to try to finish that off before lunch so
your comments stand between you and lunch. Go for it.

DR. HOUSTON: Thank you. You started off by talking about incentives —

DR. COHN: Well that’s in the section.

MR. HOUSTON: Right, I understand that, but you never sort of, I didn’t get
the sense that we ever closed that conversation and I do think we need to talk
about that part of it.

DR. COHN: So help me with the conversation, I just wasn’t sure whether
incentives were the right word to convey what we’re talking about here but I
may be wrong.

MR. HOUSTON: My concern is that incentives has obviously different meanings
to different people and some people say there should be monetary incentives for
PHRs which I think other individuals will say that’s too far of a stretch, I
can understand incentivizing organizations to develop EHRs because there’s a
very direct relationship between what goes in EHR and the delivery of care
whereas I think some people might say PHRs themselves, what, I mean should
there be a financial incentives. That’s the fear I have, incentive is going to
be misconstrued to mean that, that’s the first thing out of my —

DR. COHN: Well that’s I think where I was going too but I’m struggling for,
I mean is there a different word or is it the whole concept that’s wrong,
Steve, do you have —

DR. STEINDEL: Simon, I think we struggled over this a little bit and the
recommendation itself is strange and it says the federal government should
address incentives for PHR systems as it considers incentives for EHR systems.
And so what it’s doing is vaguely equating the incentives for two, for both of
those, and the incentives for EHR systems right now are vague. And it was
deliberately done that way because of a lot of what John just talked about was
it’s very difficult to describe the universe of incentives in this area. But we
did feel, I think Harry and I worked out the wording for this particular
recommendation and we discussed it, we did feel that there was a sense that we
should provide some type of incentives for PHR usage where incentives is an
undefined word at this time and so there was also a sense that the government
is talking about incentives for EHRs where incentives are undefined as well.
And so we would just say okay, if you’re going to talk about incentives in the
EHR world you should talk about incentives in the PHR world.

DR. COHN: Okay, and I guess maybe as I’m listening to all of this stuff I’m
sort of wondering whether this all applies and I guess I’m, my own view is that
I really wonder whether the government has an important role in aligning
incentives to support PHR systems, I think it’s the marketplace has a role in
reminding incentives almost more then the government, or that EHRs seem to be a
particularly difficult area and I think it’s only with great reluctance that
the government is going into incentives there and may not.

MR. STEINDEL: And my response to that is we carried this recommendation
forward because it was in previous drafts and so that, I think that is very
appropriate to discuss whether or not we should leave the concept of incentives
for PHRs in the letter.

DR. COHN: Bob and then Stan.

MR. HUNGATE: This is probably adding different information that should have
been in earlier sections of the letter but it relates to the benefits of PHRs
as you perceive them, or how you might perceive them. It is my conclusion that
the provider system is overburdened with a collection of information, some of
which it doesn’t think is really necessary, and that patient’s self reports
might be a better source of things like health status information, adverse drug
reactions, that things stated by the individual are really very much like
things collected from surveys. They’re self selected surveys, they’re not
randomly chosen surveys, but they are information which is supplemental to the
information from the EHR and may provide additional valuable information on
health as opposed to health care. And so there may be a benefit specifically in
the monitoring of health which is different for the government then for the
market. That there’s something that the individual benefit on self monitoring
but there’s also a more all encompassing monitoring that sums up those
individual observations and generates health statistics. So I think there’s a
content there that we haven’t addressed specifically, maybe it’s beyond the
bounds of what we intended —

DR. COHN: I think you’ve moved maybe a little beyond the first letter here

MR. HUNGATE: I understand that —

DR. COHN: I think I agree with what you’re saying —

MR. HUNGATE: I want to raise the issue because I think it’s a context around
this kind of document that’s important and I don’t know where it should be.

DR. DEERING: If I could sort of build on Steve and Bob’s comment, the reason
it was in the first draft is because we heard that the government did have a
role, the government perceived value, we begin our report, we frontloaded all
of our discussion about the value of these things. And again to the extent that
it was based on the expert review and testimony, or added to it, it didn’t
derive solely from the report that was commissioned to talk to experts about
what is the federal role, this was one of the strong things that came out of
the expert review. So again, I’m just trying to point out why it was in there
in the first place is that initially there was a perceived value to the
government that it should explore without knowing how or what.

MR. HOUSTON: That’s a good point and maybe, might I suggest changes to the
recommendation, can we say federal government should address whether incentives
for PHR systems that are tethered, and I know it’s the wrong word for
discussions, that are tethered to EHR incentives as it considers incentives for
EHR systems. And the reason why I differentiate between the tethered and
untethered and I’ll tell you why, sort of to what Bob said, if there’s a clear
relationship between what the patient can do with the PHR and tying it to
improving quality of care or reducing costs I would think that would be done in
the context of a PHR system that is associated with an EHR system, and that if
you say we should consider whether incentives might, that type of circumstance
might be appropriate, I think we can focus —

DR. COHN: I don’t think you can, I think that’s, no, I don’t think you can,
I mean I’m happy to do wordsmithing on this one but to start at this point
trying to differentiate values from certain sorts of PHR systems versus others
and we really have no data, I think you’re taking a big jump there. I’m
obviously happy to consider other words for the recommendation —

MR. HOUSTON: Federal government should consider whether incentives for PHR
systems are appropriate as it considers incentives for EHR systems, or
something like that.

DR. STEINDEL: That’s more or less the same sense, yeah. I mean that’s the
sense of what Harry and I were thinking about, I have no problem with that
change in wording.

DR. COHN: Cynthia?

DR. BAUR: Once again we agree, Simon, so this is a red letter day.

DR. COHN: So what was your agreement level?

DR. BAUR: Well, because I think this is a really critical area to say what
is truly the federal contribution rather then role to PHRs, and I think the
extent to which the language has carried over from the EHR it is important to
think about whether the federal government or HHS in specific, their goal is
really as some other people have articulated, it’s these other things, is it
PHRs itself, I mean PHRs are a solution, I mean they’re one way to get people
more engaged with their health or improve health status or all these other
goals the department has articulated.

So I’m guessing, I’m wondering if the intent here is really to sort of kind
of pick PHRs as the winner strategy in a way, I mean it probably sounds funny
coming from me as such a strong advocate of PHRs but I’m just not, I’m not
entirely clear in my own mind what the actual incentives are that HHS or
perhaps OPM in its role in terms of benefits and things like, which is a more
limited role, but I’m not sure sort of as a general population strategy that
the federal government has a role right now in terms of incentives on PHRs. It
may have a role in looking at how PHRs help further its goals in these other
areas and the extent to which it can help promote or encourage the
dissemination of or things like that. But I think the incentives is almost too
specific at this stage.

DR. DEERING: There’s two things that I’m hearing that we could do, the first
is I was charged with coming up with a little paragraph which as I said I
didn’t know whether it was actually a recommendation or just text in the
section itself which talked about the government examining its various roles in
identifying the value of PHRs, etc. So one solution is to simply focus on that
paragraph and again then we can go separately as to whether or not it elevates
to the level of a recommendation or not because it was very broadly stated as
to examining its roles in various ways for identifying the value of PHRs.

The second possibility that I’ve heard is that in addition to whatever, to
that first paragraph and just leaving that, or that one paragraph as it would
be, if we do want a separate recommendation in this area first of all there’s
the issue of the use of the word incentives per se but what was more recently
raised by some people is asking the federal government to explore whether it
has a role in providing incentives for PHRs as it considers incentives for EHR
systems, or even dropping the second half of the sentence all together. So
we’ve gone from considering incentives at all to considering whether it has a
role in those incentives.

MS. WILLIAMSON: I’m in support of what you just said, Mary Jo, and I
basically think that because of the CMS open forum on PHRs one of the questions
that one of the individuals when they open the lines for them to call in asked
was would there be economic incentives for use of PHRs through direct or
indirect methods and CMS’s response basically was we don’t know at this point
if we’re even going to offer them but they asked for input as to how that
should be provided if there should be, if CMS did offer a PHR to their
beneficiaries would they give an incentives to those who did decide to use

DR. DEERING: My only concern, Simon, with eliminating this all together is
that there is discussion out there, again CMS is saying that it is exploring
it, I mean as there is with all of the uncertainty surrounding incentives for
EHRs I just think the discussion is going to arise and that we would not do the
department as much of a service by just ignoring it all together. And so it’s a
question of saying this is an issue that’s probably going to arise given the
value statements that people are attaching to PHRs and the government’s
interest in it and everybody’s explorations so we’re recognizing that without
coming out with a specific recommendation. That waters it down quite a bit —

DR. COHN: Well I guess and I guess I’m wondering are we talking, once again
we’re sort of in this area, and maybe we haven’t done a very good job
describing what this section really is, I mean are we talking primarily about
the government and its role as insurer and payer, because I mean I think that’s
different then a policy role —

DR. DEERING: That’s why it could be rolled up into that prior paragraph that
you already wanted me to put together that sort of addressed these multiple
roles. And the other thing that we could ask ourselves is when we go on to our
future work plan do we consider this an area where we want to state as we’ve
said elsewhere in the letter from time to time, this is an issue that we do
think we need to look into more. Maybe not but I just want to say that there
are other areas where we’ve already identified yes we will be looking at that.

DR. COHN: Well I guess the question you’re asking is is what do we say in
the body of the text and is this a recommendation or is this more of a
statement that we will continue to monitor, I mean I guess I’m getting a little
confused, we’ve gone through enough different iterations of all of this, I
think we’re agreeing that, actually I don’t’ even know what we’re agreeing.
John Paul, maybe you have, I think we’re uncomfortable with being quite so
positive about incentives?

DR. HUFF: Did it ever get to be my turn?

DR. COHN: Stan, I didn’t see you, I mean it may never get to be your turn
because I never looked that far over, my apologies. Stan.

DR. HUFF: Well I’m inclined to say less about incentives and I’m
particularly bothered by the last paragraph in the section before the
recommendations where it says the government has an important role in aligning
incentives to support it, today there are few specific rewards for using or
providing them without proper guidance and it goes on. I mean to me we’re so
early in this thing that it’s premature to talk about incentives and I would
have said, I don’t think it’s the government’s job to try and make these things
useful, I think it’s the people who are creating them, I mean we shouldn’t
provide incentives for people to make cars, people make cars because people
want to buy them and they’re useful to them and so there’s a role, the other
things we described above say, talk about vision, offer vision and strategic
leadership and adherence to standards and that sort of stuff which I think
there’s a really good basis for. But I think we’re early enough to say unless
we talk much more specifically about how a particular use of these PHRs for
diabetics, we’re going to decrease costs for CMS somehow in caring for
diabetics, I don’t know, it’s too early to say that, I mean it seems to me that

DR. COHN: Stan, I think what I’m hearing, and I don’t mean to jump in but I
think what you’re proposing is that we get rid of that paragraph —

DR. HUFF: Yeah, remove that paragraph.

DR. COHN: Which is certainly one sweeping solution to this whole thing. I’m
not sure it’s a bad idea given the trouble we’ve had trying to wordsmith this.
John Paul? Bob? Okay.

Now I do want to just observe and this makes us all sort of nuts here but
clearly we’re going to be getting into wordsmithing, I mean not wordsmithing
but underlying versions sort of going forward with mark outs and all of this. I
do want to just warn everybody that apparently we’re working without a quorum
which means that we’re going to have to do something, we’ll check on this over
lunch but it may mean that we may have to review some of these changes with
other subcommittee members, workgroup members or other methods, we may have to
have a conference call next week to sort of ratify all of this.

MR. HOUSTON: What’s the quorum, I mean —

DR. COHN: Let me talk to Marjorie and find out —

MR. HOUSTON: I don’t think we need a quorum for what we’re doing, I mean I
think we should have consensus out of the workgroup and then I think obviously
we need to have a quorum and approval from the committee in order to push this

DR. COHN: And I’ll find out the rules on that. But anyway, what I’m asking
people at this point given that we will deal with that over lunch, do people
just want to remove that paragraph and remove the recommendation? Cynthia, are
you —

DR. BAUR: Well, does that mean not taking the paragraph that Mary Jo was
offering? So just exploring what that is rather then being specific about the
government definitely has a role in incentives because she was offering a
version that said again, this is, because this is new it could be explored as
you’re working on incentives in general because I think —

DR. DEERING: Only to clarify. I heard my assignment as two paragraphs, early
on in the conversation we talked broadly about exploring their general roles as
payer/provider, etc., etc., and then there was a second paragraph and it’s that
first paragraph that if at all, if at all I was suggesting this whole notion of
incentives could conceivably have been imbedded, not the second one, the second
one was definitely much more the consumer protection area.

DR. BAUR: Okay, sorry. Then I guess my question is is the workgroup saying
that any mention of incentives comes out if this paragraph comes out because I
thought Mary Jo was proposing there could be a way to raise it in sort of the
general discussion of roles.

DR. COHN: I think we would consider that, I mean I’m speaking for myself —

DR. HUFF: I’m okay with saying we could explore whether incentives are —

DR. COHN: But maybe not rising to the level of a recommendation and not
something that is clearly quite as strong as —

DR. HUFF: — saying it has a role in aligning incentives, it just seems
premature to the level of knowledge we have of this right now.

MR. HUNGATE: I’m comfortable with that.

DR. COHN: Okay, so I think what we’re doing is deleting then the paragraph
and the recommendation and then we’ll consider this other wordsmithing when we
sort of put it together.

Now so are we done with that section? You’re all wondering why we have two
days to this meeting. Shall we take a lunch break?

MS. WILLIAMSON: Mary Jo, would you, if I could ask if you could reread that
recommendation, the federal government, the one that Mike Fitzmaurice had you
modify —

DR. DEERING: I think it now reads the federal government should identify and
address issues related to technology access and use by underserved populations,
period. HHS should also —

DR. FITZMAURICE: Do you want to make that information technology or is
technology fine?

MS. WILLIAMSON: That was my concern, whether we wanted to specifically just
say technical access and use or whether we wanted to make it more broad to
address the impediments to implementation of PHRs —

DR. FITZMAURICE: [Comment off microphone.]

MS. WILLIAMSON: I’m just thinking that there may be other issues beyond
those specific issues that will be a problem for the underserved population —

MR. HOUSTON: That’s only the first sentence she read off, correct, there’s
still the literacy issue —

DR. DEERING: Literacy requirements, but I guess what do you think falls
outside of info technology and use, I mean again here too I was trying to think
of that as a shorthand umbrella for almost everything.

MS. WILLIAMSON: I was really thinking about other issues, environmental
issues, lack of access to any IT, just —

DR. DEERING: That’s why I said just technology access initially because it
got at the connectivity issue, I mean if at home they don’t have internet
access —

MS. WILLIAMSON: But I’m thinking the local library would provide them
access, there’s other ways of providing access to the internet or to the
ability to have PHR information.

DR. DEERING: But I think that’s, again for people who look at this issue and
Cynthia correct me if I’m wrong, that’s exactly what’s included in the concept
of technology access.

DR. BAUR: I would just be concerned about why are we focusing on
underserved, I mean true we have a special mission in the area of underserved
but I think if the second issue, the second sentence by raising sort of the
health literacy issues, again there’s sort of a more general interest in some
of the issues around people being able to use health IT in a way beyond say
sort of simple searching for health information because certainly using a PHR
is going to go beyond that and it’s going to require capacities that people
probably haven’t really had to exercise yet because that environment doesn’t
really exist. So I’m just sort of saying maybe you want to call out that the
department has a special mission relating to underserved but that some of these
issues around barriers and access and whatever may actually become an issue for
other groups as well and I just don’t want to preclude that there may be some
other things, I mean because that’s some of the work that we’ve done is the
ways in which it’s not just an underserved issue.

DR. COHN: Okay, well let me try to refrain what you’re describing, I mean we
heard testimony specifically about the underserved and indeed the committee
itself as well as HHS has a special charge and concern about the underserved so
I don’t think we want to lose that. I think the real question I have as I’m
listening to your more general concerns is whether or not that’s going to be
part of the public education campaign. Well, I mean it sure sounds to me like
that’s what we’re talking about. Am I missing —

DR. BAUR: It’s not just a persuasive issue though, or educational issue,
it’s a capacity issue.

MR. HOUSTON: Maybe the use of the concept of public outreach rather then
public education may be more encompassing of these other issues.

DR. BAUR: For me I read health literacy as being sort of broadly applicable
so that’s okay, I think you can sort of use that language there to do other
things, I just wanted to make sure that people really intended that they were
calling out issues related to underserved because I do see that there are going
to be other issues for other parts of the population besides underserved if
PHRs are really going to become sort of this mass phenomenon.

DR. DEERING: So is it something like, we’ve got to get down to words here,
the federal government should identify and address issues related to
information technology access and use particularly by underserved populations.

DR. BAUR: Yes, exactly.

DR. DEERING: Single word solves it.

DR. COHN: Sounds good. Now it is 12:30, why don’t we take a break until say
1:20, about 50 minutes, and then we’ll come back. Thank you.

[Whereupon at 12:33 p.m. the meeting was recessed, to reconvene at 1:28
p.m., the same afternoon, July 27, 2005.]

O N [1:28 p.m.]

Agenda Item: Continue Discussion of DRAFT Letter –

DR. COHN: Let’s start again, we will continue along, I’m not sure any easier
but we will continue along into the afternoon.

Now the next item which is a new item we talked about during our conference
call was a section on, it says a research agenda for PHR systems. Now Steve
actually you had a suggestion for wordsmithing I want to note early on, I think
it was just an additional word or two wasn’t it?

DR. STEINDEL: Yeah, I forgot the exact words but in the second paragraph I
suggested we just insert the phrase we also suggest a variety of research
studies and pilot tests of PHR systems. And the reason why I said that was the
laundry list that we give of the types of research that we want to do, some of
them really aren’t amiable to pilot studies. And just by inserting those words
we —

MR. HOUSTON: Would you reread that?

DR. STEINDEL: I would just say, I suggested we also suggest a variety of
research studies and pilot tests of PHR systems. Because now all we’re doing is
recommending pilot systems and basically we’re saying that we should do a pilot
test on what is the optimal interface to a PHR. And pilots are not the way you
find that out.

MR. HOUSTON: Yeah, I guess a lot of the questions I agree with you, I mean
people use a PHR system and what purposes, I mean that’s not —

DR. STEINDEL: What you usually do is to more focused research and hone it
down to a small number of things that you can then bundle together and test in
pilots to see if it’s really feasible.

DR. COHN: So are we comfortable with that as a, I mean I think that’s sort
of a friendly amendment.

Now do people, I had a particular question in terms of the first paragraph
and I’m trying to think of which sentence it is, it reads here NCVHS recommends
that any renewed research on HIT include the requirement that information
exchange between multiple EHR systems and any other data sources that are
included in the HIT study NPHR systems be included. And I found myself going,
first I wasn’t sure what that meant and, I mean is that something we, I mean
what is it that we’re talking about here and what is the intent?

DR. DEERING: I can tell you what I understood the intent of that to be.
Recall in one of our early discussions, I think it was first Paul who made the
observation that as we were talking broadly about the research needs and we
hadn’t yet begun to frame them he observed that there’s an awful lot of
research going on right now and if you simply added sort of PHR component to
all that research the incremental cost would be relatively low and it would be
a very logical extension, it would be also a way to specifically get at the
point that everybody has made which is the ultimate value of PHRs will only be
accomplished when they are interoperable with EHRs anyway, so if that is the
stated ultimate value, proposition for PHRs, then it seemed very logical to use
existing or planned research into EHR information exchange to add this
potential for information exchange with PHR.

DR. COHN: Okay, well I guess I found myself, I guess I was confused because
it says, I read any renewed research means any research, in other words all
research, and we’re talking about between multiple EHR systems and PHR systems,
so we’re requiring that any new research by definition have to involve
connectivity between multiple EHR systems and either one or multiple PHR
systems. And this is a requirement for any research. Is that what we’re saying?

DR. DEERING: It certainly sounds extreme the way you —

DR. COHN: Well, that what when I read this that’s what I’m sort of saying,
maybe the problem is the word any but —

DR. DEERING: There’s another point we were trying to get in I think, it is
the notion that, and we state this up front when we describe the fact that even
in the current preponderance of tethered PHRs there is some interoperability
between the EHR and the PHR because their views into it but that there is not
currently interoperability let’s say between Kaiser’s own PHR or Palo Alto’s
own PHR which is a view, and any other medical system if that patient moved on
to another provider, so that you’re not getting the portability which was the
goal of information exchange, in other words you’re not just trying to
strengthen the pipeline between the given provider and the given patient, the
long term HIT vision is portability of information.

DR. COHN: Just that it’s in the research agenda, that was the problem I’m
having. And as I said I don’t know whether the problem here is any or that the
problem is multiple or whether the problem is the whole sentence and we strike
it, so I guess, and maybe I’m the only one who’s sort of looking at this one
and just trying to figure it out.

DR. BAUR: Simon? So I guess is the point here from extrapolating from what
Paul had suggested before, is the point the interoperability requirement or is
the point the research requirement? Because I’m not, again, I agree with you,
Simon, I’m not entirely clear what is the research component there because
there may be, I could see research studies in which the data exchange is not
necessarily the point of it, or data exchange might not even be part of what’s
going on. So that’s what I’m saying, is it really about making sure, is it
treated somewhere else under interoperability or something else, or is it
really the research on interoperability that’s important? I’m confused.

MS. WILLIAMSON: That’s the way I read it, the research on interoperability.

DR. BAUR: And I didn’t think that’s what you guys meant, it was just that if
there was the need for data exchange and a research study that was being done
that it meet certain standards that would allow data exchange to happen. Is
that the point?

DR. DEERING: I guess what I’m deriving from this is that there are two
separate issues imbedded in this sentence at a minimum that are causing
problems. The first is whether we are suggesting that whether the point of this
sentence is purely on interoperability or whether interoperability is just one
of the things that’s called out within the broader spectrum of research into
HITs and EHRs, and I think the latter was the intention and everybody is saying
that it doesn’t read that. I don’t know if this solves the problem, Mike
Fitzmaurice had a tech suggestion here that I’ll read just at face value and
then we’ll see whether it addressed the concerns that you’ve all raised. NCVHS
recommends that any renewed research on HIT include information exchange with
PHR systems, period. Now that localizes, that focuses the gist of the sentence
to purely the information exchange and interoperability piece, and so the
question is, so that might clarify or not.

DR. COHN: Do people have comments? I’m actually beginning to think that we
maybe just need to remove this sentence —

DR. STEINDEL: I would be in favor or removing the sentence, I think it adds
very little and it introduces a very confusing element into what we’re trying
to say.

DR. DEERING: Well the previous sentence does say it could be conducted as an
extension of research into EHR systems —

DR. STEINDEL: And the last sentence follows.

DR. DEERING: Strike it?

DR. COHN: Strike it? Stan?

DR. HUFF: I’d be in favor of that.

DR. COHN: We’re trying to emulate you today in terms of your —

I mean we can look and see if there’s anything here that fits into the
interoperability section which is I guess is how I’m sort of reading this but I
mean I think we’ve already handled it in an interoperability —

MR. HUNGATE: In looking at the interoperability as I read it I don’t see the
clear interconnection between EHR and EHR interoperability which I think is
called for here, maybe that’s just my reading —

DR. COHN: Let me get to the interoperability —

MR. HUNGATE: — and think we ought to revisit that.

DR. COHN: Does anybody else have any other comments about the research
section? John Paul.

MR. HOUSTON: The last paragraph on that page, NCVHS also feels that a series
of metrics around PHR system usage processes, outcomes, and impacts should be
identified and implemented. The proposal sort of dangles out there, I mean
there isn’t much discussion as to for what purpose and in what framework would
these metrics be created and I’m not sure implement is the right word either, I
think it’s adopted that, how are these metrics going to be used, what’s the
purpose behind them, and I think some type of sentence there clarifying the
purpose of the metrics might be helpful.

DR. COHN: Do you have a solution?

DR. DEERING: I’m just writing down that we have to find one, clarify the
purpose of the metrics —

MR. HOUSTON: This recommendation, I’m assuming is it to determine usage, I
mean what, there has to be a purpose behind why we’re asking for them to create
metrics, I think that’s what’s missing in my mind.

DR. DEERING: I guess I could think of coming up with a fairly broad
statement that says in order to improve both our understanding of and our
assessment of, we need the metrics to be able to look at them carefully, these
metrics would include. In other words it’s not just assessment because we’re
already saying in advance, and this is research section, we don’t even
understand them enough and we probably need good metrics even to —

MR. HOUSTON: So either the research towards adoption of PHRs or the use of
PHRs —

DR. DEERING: Or even research on the understanding and adoption of?

DR. COHN: Well, and I guess the question is is should this be here or should
this be, I mean to me it sort of is very, it’s sort of almost a consistent
thought about our personal health records are evolving in concept but in
practice, we’re talking about axis and dimensions and how is all this
described, is in reality this metrics more along to help better describe and
identify the value of all of this stuff. Or is metrics really a research issue?

MR. HOUSTON: Stan is going to have some wisdom here.

DR. HUFF: Well I certainly agree with the idea that some purpose, and the
idea is who is using them, who derives value from the use, who uses them, how
much do they use them, how do they derive value from what they use, from their
use —

DR. DEERING: I think one again is more a technical fix then anything else.
Right now it looks like it’s in the research agenda and that is indeed where it
was, but it also happens to be the last substantive paragraph before sincerely,
thank you and sincerely. So it could well be that if there’s a way to make it
visually clear, I mean this can be a just a general statement, to further
everything that we’ve, sort of allude back to the entirety of the letter and
say that to help advance all of these issues we see that it could be important
too. So again that’s more a technical fix then a substantive fix.

DR. STEINDEL: I kind of like that idea because it’s one thing that I always
felt that was missing from this letter is a paragraph before the once sentence

MR. HOUSTON: But is that the right paragraph before the closing? I think
this to me does not tend to conclude the entire letter, this is still I think
more, would be more associated with the research, whatever you call this, the
research section of this letter then it would be of the other things that we’re
recommending also. That’s my only concern, that it doesn’t really close the
letter adequately. And maybe what we do is rather then say research agenda is
research and evaluation agenda, and then it wouldn’t, you wouldn’t have to
characterize this as research, you could argue that this is simply part of the
systematic evaluation of PHRs and add that in as metrics that we can use for

MR. HUNGATE: Related to that, you know the opening paragraph reflects back
to the putting forward of a vision for personal health records and this can be
tracking how the vision is proceeding, metrics in fact checking whether they’re
just on their computer, whether they’re used, whether they provide results,
which is part of the management of the implementation which is what metrics
help with. I think it’s coherent to do that in this paragraph given the opening

DR. COHN: If we all agree that it’s research and evaluation agenda on PHR
systems and that will help —

DR. DEERING: The other thing that we could also do is we could move it up so
that it becomes the second paragraph because it would then follow the sort of
general statement about looking into all this, etc., etc., and we could lead
into it by the kind of purpose statement that you said that again alludes to
the fact, and to enable to do this we note that it will be important to. And
then you close with the specific research questions down below.

DR. BAUR: Well if you’re going to introduce the idea of evaluation well that
probably suggests your transitional sentence there, that you need a sentence
that says what the difference between the research part is and the evaluation
part is and that you could then have a paragraph then on evaluation. So that
would suggest that it wouldn’t, I mean I guess it could move up but I think
it’s more framing it as evaluation issues rather then research issues, so it’s
clear why the section has research and evaluation in the title.

But I just wanted to suggest too, is this truly an agenda? And I apologize
if missed earlier discussion on the use of the word agenda, because there’s
really no clear statement here that says a research, HHS ought to facilitate or
convene a process to help develop a research agenda or anything like that.
There’s some specific kinds of research that are suggested here but it’s not
agenda in the way that researchers think of agenda setting. So I could see that
you could have it called, well, or just advancing research and evaluation on
PHRs is I think a little bit more general.

But I mean I wanted to also call out do people really feel like there ought
to be some process of agenda setting going on here related to research and
evaluation because I think if that’s true then a very clear statement that
opens that section could be very useful to make clear that there currently is
no research and evaluation agenda and there could be a very useful role for HHS
in helping to convene such a process, not do it itself but convene a process —

MR. HOUSTON: Are we sure there isn’t research going on right now in the

DR. BAUR: It’s not that it’s not research going on, it’s the agenda in which
those individual research studies are happening.

MR. HOUSTON: Are we sure that’s not occurring?

DR. BAUR: I don’t know of an actual agenda around PHR research.

DR. COHN: I think you’re bringing up a very good question and I guess I have
to ask the opinions of the workgroup members as well as obviously staff, I
think how I had seen this and obviously I think I was somewhat persuaded by Bob
Hungate’s comments on one of our previous conference calls about that we really
wanted to focus on more then pilots and that was a very tangible thing the
department could do and push and that we were going to try to somehow leverage
those around the research agenda. Now I’ve since been persuaded by Steve that
not all of these things sort of work real well, pilots are helpful for some
things, aren’t helpful for others, but I think that was sort of how I had
initially sort of seen trying to sort of condense and compress all of this. But
as we’re saying all of this, now we’re talking about agendas and on and on and
on so it gets to be a question of exactly what our recommendation is here
because you obviously have a couple of things and we want to have this as
recommendation: and if so what is the recommendation, or is this sort of all
just fine as it is being a descriptive couple of paragraphs.

MR. HOUSTON: In keeping with the rest of the letter I think we should be, to
the degree that we’ve actually made, we were saying these things, I think they
should say recommendation: or there should be something maybe further down that
summarizes what we’re putting in this paragraph because that’s really the form
of the other paragraphs.

DR. COHN: Like I said, just put us on the hook of figuring out what we’re
recommending here.

MR. HOUSTON: Unless we just slap a recommended: on the front of these last
few paragraphs. I don’t know.

DR. COHN: The good news is that we’ve already been through the first part of
the letter so hopefully it will be easier.

DR. DEERING: Well just again to sort of say that we’re, trace the circle
that we have come perhaps. At one point in time there was a great deal of
interest in our looking very, very vigorously into research because we knew how
much we didn’t know and we thought that this was a very important issue and
there was a lot of discussion about how important it would be and everything
seemed to boil down to do we need more research and Bob and Eduardo volunteered
to sort of do something and we came up with this very, very, very long text
that no one, that was really too much for us to chew off.

At one discussion, and I do have to say my notes are absolutely clear that
the clearest instructions that came out of that particular discussion of the
entire letter was that in the research section we wanted very precise action
oriented recommendations that named agencies and said what they should do
because otherwise the department would ignore it. And so at that point in time
we seemed to be going toward a very precise agenda setting letter in the
research field. Then when we started to try and make that happen it didn’t look
quite like we were ready to go that far and we wanted to seem to pull back from
anything that was quite the specific because maybe we hadn’t had the hearings
to fully, we certainly had not testimony on our research recommendations.

So then we pulled back to what can we say in one page and so I’m just sort
of tracing our itinerary of helping us remember how we got to where we are
today in case it makes a difference.

DR. COHN: So if we have to go back to recommendations we pull out those old

DR. BAUR: So do you have draft recommendations like AHRQ will do the
following kinds of health services research —

DR. DEERING: Absolutely, absolutely, very detailed under each of those

DR. BAUR: And people thought that was too pointed.

DR. DEERING: Under each of the categories of research, and I don’t have my
copy with me now but we had agency specific research.

DR. STEINDEL: Simon, after the last phone call I volunteered to create a
shorter version of the research agenda that I sent and it’s not the version
that’s here, but basically it consists of an introductory paragraph, a section
called market research that lists the areas of market research we heard about.
Another section called health services research, similar type of laundry list.
Technical research with some similar, and then another section of metrics which
is basically the sentence that we have here, and then three specific

The first one was, and these were agency specific, I just put them down from
the top of my head for discussion, HHS expands current AHRQ studies involved
with emerging health information technology environment to include the PHR. And
then specific items noted under the health services research and metrics above.
And then HHS organize specific pilot studies to be conducted by CMS with some
specifics there. And then finally that the Office of the International
Coordinator add some of the technical aspects of the research to its projects.
So those were three specific recommendations in a shorter version and if we
want I can pass that on and have just that page printed for discussion.

DR. DEERING: I only want to say why it’s not there —

DR. COHN: It was my fault and I’m willing to take the heat on this one as
well as admit that maybe I was misguided. Yes, Linda.

MS. FISCHETTI: I can’t tell from the notes exactly who wrote this but
somebody laid a golden egg right here, in the second sentence it says recommend
the department begin to collect data and build evidence. And then the third
item there is their effect on patient health. And I think that that’s the most
crucial thing, why have an electronic health record if it does not have a known
positive effect on patient health so when you look down in our bullets it says
what is the optimal interface for EHR, my software changed it to HER, but I
mean really that can only be evaluated in the perspective of improving an
individual’s health.

So earlier today we had some recommendations to take for example the roles
conversation and look at the higher level, I wonder if we need to take this
conversation and abstract it even higher but put the emphasis on their effects
on patients or individual health as the overall umbrella for whatever a
research agenda would be.

DR. DEERING: Let me push back here for a minute. I don’t, as one looks at
the various value propositions for EHRs improving patient health is a key value
assumption but it’s not the only one, it’s improving the delivery of health
care, it’s improving a variety of related things that are not necessarily
patient specific. And my understanding of the value propositions that were made
earlier on here is that patient health is certainly an enormous potential
benefit but as Bob pointed out EHRs are a benefit to improving population
health assessment perhaps, and for assessment and measurement. So I would just
ask us to consider carefully whether we would want to put everything into the
individual patient health improvement aspect. Maybe we would but I think it
would deserve a little bit of consideration.

MS. FISCHETTI: I accept that push back.

MR. HUNGATE: and I don’t we ought to exclude the possibility of trying to
strengthen the interrelationship between individually improving health and at
the same time improving population health, they are not unrelated, so that
somehow making that clear reinforces the vision we put together which has all
these interesting circles, so I don’t know how to specifically articulate that
but I think that the personal health record is a significant augmentation of
the ability to simultaneously improve personal health and population health.

DR. COHN: This last bullet here, does that meet your needs?

MR. HUNGATE: That says health care quality, does not say individual health

DR. COHN: Well, it say health care quality, cost and population health,
which —

MR. HUNGATE: That’s different then individual health.

DR. COHN: Oh, you want to say health and health care quality.


MR. HOUSTON: Why can’t you simply say whether a relationship between PHR
systems and patient’s individual health, patient safety, health care costs, I
mean add it to the list rather then trying to change one.

MR. HUNGATE: That’s fine.

DR. BAUR: Or just stick individual in front of population, but individual
and population health. But actually just to go back up to the framing of this
whole thing, in the opening statement basically is a statement that there’s a
very weak evidence base right because of expert opinion and focus groups. And
to Mary Jo’s point that if the concern before was if the committee just
directed the department to conduct research they wouldn’t do anything because
it wouldn’t be clear about what to do —

DR. COHN: Well I’m thinking we need to get Steve’s version out and look at
it —

DR. BAUR: And also I’m just thinking too that you could, I mean if you think
about the steps that lead up to the data collection there probably is even an
elaboration that’s needed there because the first thing the agencies have to do
is they have to basically review their portfolios both in terms of programmatic
activities and research activities, and then upon reviewing their portfolios
they have to understand what it is possible for them to measure in that
context, and then they move to the data collection. So in a way it’s kind of
also helping to elaborate the process because really what you want the
Secretary to do is direct the agency heads to begin that review process so that
you can establish the metrics and identify where the research has to happen. If
I sort of break down the process, I mean I think it articulates the end goal,
you want more data, you want more evidence, but I think if left as it is
whether in the body or as a recommendation I think it will just get blown off
because it’s too hard for them to operationalize in that format. Does that make

DR. COHN: I’m just trying to think of how we’d capture that, you’re talking
about a pre-step basically —

DR. BAUR: I think here articulates the end goal, you want the data and you
want the evidence and then you eventually want it fed back into the
department’s activities as well as any activities they fund by outside partners
or grantees or anybody else right, I mean you want the evidence and the data to
do something in terms of effecting what we do, what we invest in. So I think if
it’s going to be a recommendation to just sort of indicate the steps that need
to be taken, it could be if this is going to get called out as a recommendation
that to make clear that the agencies are going to have to begin this whole
process in understanding how research and evaluation would fit in to their
existing research and programming activities as well as what they need to
initiate in terms of new research and evaluation.

DR. COHN: And that would be a first recommendation.

DR. BAUR: I think it’s a global one and then if you want to get into the
specifics of Steve’s, because it’s broken down into those categories because
that process is going to cover it no what research and evaluation topic you’re

DR. COHN: I mean I don’t know how others feel but I wanted to pull out
Steve’s document and have it copies and I guess we just need to sort of see if
there’s any, and I guess I’d have you sort of, and Mary Jo or somebody —

DR. DEERING: I’d love to turn the research section back to a small team.

DR. COHN: Do you want to try to sketch out what that recommendation might
look like? And we’ll have yours in a couple of minutes?

DR. STEINDEL: A couple of minutes I hope, we seem to have gotten material
back there —

DR. DEERING: That fits into the first paragraph because what we’re saying is
that there’s a lot of existing research going on, not only what we referred to,
it’s the other side of the coin, we’ve always said there’s a lot of HIT
research going on so take a look at that, assess your HIT portfolio and see how
you can add PHRs and what this does is it broadens it and says take a look at
your broader research portfolios and see where it can be added and where the
gaps are.

DR. BAUR: You could see if you’re doing some kind of community based
programming which there ought to be a health IT component or a PHR component,
you’d want the agencies thinking about that as well right, not just is it,
because still, the HIT dollars are pretty concentrated in terms of whose got
that money right now.

DR. COHN: Well I’m not in any way disagreeing with you though I am thinking
that we probably ought to stop talking about the old version and we ought to
wait for the new version to sort of figure out what we’re going to do with it,
make sure we’re representing your concerns. So I want to, if you could scroll
down something and then we’ll hopefully in the next ten or 15 minutes we’ll see
what Steve has.

Now I guess I’m going to suggest that maybe what we do —

DR. DEERING: Could I just, just to set some parameters here, because I know
what Steve’s looks like, basically it was the text from the existing sections
and then it had stripped out the individual sub-recommendations but added three
global recommendations. It’s very helpful in identifying areas for research but
I wanted to be sure that what I think I’m hearing and where I think we’re going
is that sort of the opening paragraph about adding on to what you’re already
doing is probably going to stay both within the HIT field and the broader
research portfolio field. Somewhere the metric section is going to come in,
either as a second paragraph or the end paragraph —

DR. COHN: I think Steve has a specific recommendation —

DR. STEINDEL: It’s not a recommendation but it’s a bullet item —

DR. DEERING: It’s a paragraph, I mean it’s just moved up. Although I
actually didn’t hear it excluded as a recommendation, at least I didn’t hear
closure on that. I certainly had recommended that it could either be just take
John’s purpose statement as an intro and it could still stay as the end
paragraph, or it could become the second paragraph. I just wanted to note that
I didn’t hear any closure on what we do with the metric system.

DR. COHN: What you heard is we never came to closure on what we did for
recommendations —

DR. DEERING: So we’ll come back to that.

DR. COHN: I think we had said in this version that we were probably fine
with having that second paragraph but I actually want to look at this new
version to see how everything fits together because I mean there’s a question
one of, what’s there and the question is in what order and it’s hard when we’re
switching versions. So is that okay?

DR. DEERING: That’s fine.

DR. COHN: Is everybody okay if we sort of switch over and we’ll come back to
this? I realize we’re jumping around but it’s either that or take a break for
ten minutes. Let’s keep going.

Okay, I’m going to suggest we go back to the beginning and let’s see if we
can work through a page or two and then we’ll have a chance to go back to that
research section —

DR. DEERING: Back to the San Francisco side and start again, right?

DR. COHN: That’s right, keep going around and around here. And I think many
of you have seen this first paragraph a number of times, I guess I would ask is
everybody comfortable with the first paragraph?

PARTICIPANT: [Comment off microphone.]

DR. COHN: That’s the salutation, that isn’t the first paragraph.

DR. DEERING: And so people know, if you’re talking about the first paragraph
under background that that’s basically just added text from the 2001 report so
it’s not new —

DR. COHN: I haven’t made it there yet, I haven’t made it there yet.

DR. DEERING: Another thing I do want to point out come to think of it is
that, this is the second sentence, one, two, three, four, fifth line,
submitting this letter report on personal health record systems. We introduced
the word systems there right up front without the discussion that we get into
later which explains why we’re using the word systems instead of PHR.

DR. COHN: Well and since we’ve titled this personal health records it’s a
little odd.

DR. DEERING: But remember, it will be a letter so it won’t have a title.

DR. COHN: That’s true. Or do we want to solve the problem by this letter
report on personal health records and personal record systems? No?

DR. BAUR: I vote for systems.

DR. COHN: Just leave it at systems, okay.

DR. DEERING: And then we can explain later why we got there, it will become
obvious later.

MR. HOUSTON: In rereading this again I do have one concern here. President
Bush’s vision of a personal health record I don’t think is, when he referred to
personal health record I don’t think he was referring to what we’re considering
a personal health record. I believe President Bush was referring to what would
amount to an electronic health record.

DR. STEINDEL: I think there are many interpretations to what was actually
meant by the statement.

MR. HOUSTON: I think, I understand, I think what they’re looking at in terms
of NHIN and the adoption of electronic health records to improve the quality of
care, things like that, I really think the focus of it was on the EHR
component. Now maybe there’s, maybe PHR does somehow get encompassed in it but
I don’t think it was the —

DR. STEINDEL: No, actually in one sense I disagree with you, this isn’t,
actually what the President meant when he made that statement, you know it’s
been subject to a lot of interpretation. But one thing he was very specific
about during the time he was making these statements was pointing to the, I
think it’s in particular the Michigan case that Connecting for Health talked
about, about the father whose teenage girl had this odd form of leukemia and
was in and out of therapy for a number of years and how he was walking around,
or basically pushing around, the child’s medical records and bringing them to
each one of their providers. So he was being very specific there about a
personal health record.

MR. HOUSTON: But I think even in that context he was talking about a person
having amassed all of that person’s health records from various providers in
order to ensure that he had adequate information regarding that child’s care
versus there’s another component to this here, the personal health record we’re
talking about is talking about the patient centric record, the one that the
patient develops him or herself, which may be augmented by information from the

DR. STEINDEL: No, no, we’re very clear in this letter that we don’t know
what —

DR. DEERING: So we’re not talking about any one instantiation —

DR. STEINDEL: But we’re looking at the President’s vision that someone who
has a child in this situation can walk into another provider and somehow that
new provider would have access to the information that was amassed.

DR. DEERING: And I’d like to observe that maybe it doesn’t matter what the
President meant, the fact that we use their words is just to sort of tee them
up to say we’re responsive, you’re using these words, you’re looking at it,
it’s certainly the underlying concepts reportability and comprehensiveness no
matter what it was, again even that doesn’t matter, they use the word so we’re
just trying to sort of get them buttered up, we say we’re being responsive.

DR. STEINDEL: And that’s basically the way I’ve always read it.

MR. HOUSTON: Maybe the other way is to read, what President Bush talked
about with the personal health record is the sum total of everything, it wasn’t
just, I mean it was all medical information in a fashion that was
interoperable, transportable, electronic, so that’s fine.

DR. COHN: You okay —

MR. HOUSTON: Got off my shoulders.

DR. COHN: so are we okay with the first paragraph at this point? I mean
we’ll have a chance when we vote to argue and reconsider but I think it’s
probably okay. And I’m going to suggest, given that we’ve just received in our
hands the research agenda why don’t we take a minute to look at it and then we
can go back and then we can start with the background after we’re done with
that, do a little bit of jumping around here.

DR. DEERING: Just so that people, you have seen these paragraphs before, the
paragraphs that are under each of these underlined brackets, it’s not new
language, that was in prior, that was in all of the prior versions, what’s
missing is the specific recommendations under those individual —

DR. STEINDEL: And the shortened introductory —

DR. DEERING: And one whole section come to think of it as we moved which was
policy research I think.

DR. STEINDEL: Yes, because I felt that was covered in the other areas of the
letter, as I read it in more detail.

DR. DEERING: In which case we need to take it out of the opening paragraph.


DR. BAUR: So this is where I would suggest that in this, to augment these
opening two sentences, that a statement is needed about what the committee
would like the department’s contribution or role or whatever because it says
our hearings led to the identification but then it just kind of leaves it,
there’s no sort of follow-up, well, the department could, you want the
department to work on all of these issues, do you want them to convene people
around these issues, do you want them to do the agenda setting, I think there
needs to be some statement there about, that previews what you think the
department or its agencies contribution ought to be. And I think that’s where
you could take some modification of the second sentence from the I guess the
existing version.

DR. DEERING: I would like to put on the table that we not lose the existing
first paragraph from the version that we were looking at.

DR. BAUR: The first sentence is the same —

DR. DEERING: I understand —

DR. BAUR: So then I’m saying that’s right, you could take the second
sentence and if you want to leave it as a recommendation then I think it ought
to be called out again as a recommendation because I think it is a bit
confusing in terms of format —

DR. STEINDEL: I have no objection replacing the existing first paragraph
with the previous first paragraph as we modified it.

DR. BAUR: But I think your overview is nice too because there really isn’t
any overview then of all the different areas so I think it’s kind of combining
those two. I think you’re just previewing what are all the different types of
research and evaluation that need to be done.

DR. COHN: So I guess just to be concrete here, this first paragraph which is
just a couple sentences long followed by the next paragraph starting with this
we recommend the department begin to collect data? Or maybe a sentence before
that and then going —

DR. BAUR: Yes, or like you could frame it, at that point you could frame it
a little bit more neutrally if you want and then take the actual recommendation
language and call it out as a recommendation. So you could say the hearings
suggest that the department has an important role in leading blah, blah, blah,
or something like that sort of is one more global statement so that you’re
consistent with the format and the other sections in which you don’t really
make recommendation statements up in the body, you call out the recommendations
as a separate thing. So it’s basically just a more general statement that
represents what you think the department’s contribution to research and
evaluation ought to be and it can be any of these things, reviewing, convening,

MS. FISCHETTI: Are we losing my favorite words about the effect on patient
or individual health?

DR. BAUR: I don’t think so, but I just thought that right now the second
sentence in the existing version, it kind of jumps ahead to the data collection
without sort of previewing what the sort of global role, is that really what
you want people to do is just go out and collect data, and then you want them
to collect data on the things that are bulleted.

DR. DEERING: Somehow you’re just saying merge the first two paragraphs.

DR. BAUR: Right.

DR. DEERING: However you choose to do it tonight —

DR. COHN: But there also needs to be an additional pre-sentence or two —

DR. BAUR: Okay, we’re going to have a pizza party, we’ll do it.

DR. COHN: What I’m hearing is is that you’re also saying that there needs to
be a pre-sentence or two that frames the agenda setting, actually it’s review
of portfolios —

DR. BAUR: Or whatever, I mean I suggested all those possibilities because
they’re typically things that we do but I guess I would just like to even hear
what people would like the components of that to be and then I will be happy to
try and put it together in sentences and a paragraph. But at this point I’m not
entirely clear what the workgroup is asking the department to do, I mean if you
specifically mean you want them to go out and collect data I’m happy to leave
it that way but I just want to make sure is that really all you want them to do
is go out and collect data, because there’s a lot more that they could do.

DR. COHN: Well certainly I think there probably, I think the title of this
is a research agenda so I think we’re obviously talking about the elements that
support research and pilots and understanding what is sort of going on and
whether there’s value.

DR. STEINDEL: I think if you look at the specific recommendations, Cynthia,
we’re calling it, we’re calling for more then just collect data.

DR. BAUR: And that’s okay but I’m just saying that’s what it says now if we
take that second sentence as it is and try and fold it together. I just wanted
to be clear about what I was folding together, that’s all, I didn’t want to go
ahead and just import that sentence if that’s not what people really meant.

DR. STEINDEL: I think it goes beyond collecting data.

DR. BAUR: Okay, so do you want me just from the different kinds of research
and evaluation that are suggested here try and form that into a more, in a
global sentence or two —

DR. STEINDEL: A global sentence.

DR. BAUR: Okay, all right, I can do that. And I’ll just tell you that from
my experience reviewing documents that if we do use the word support other
people read that as fund, so if that’s what you mean, fund, then I think we
should just use the word fund because they’ll push back and say well did you
mean fund or what do you mean by support.

DR. COHN: When people talk about a research agenda, I mean money helps
research happen and I can’t think of any other way you’d do it generally.

DR. DEERING: Where’s the word support here?

DR. BAUR: Well Steve had suggested supporting research and whatever is
probably the more global statement so I’m just saying if you want me to use the
word fund I’ll use fund —

DR. STEINDEL: And actually all of the specific recommendations actually call
for funding.

DR. DEERING: Another just a logistical mechanical way to handle this is to
do a minimal amount of tinkering with Steve’s version but before you go into
the recommendations then perhaps pick up the first paragraph on the old section
which begins to use words like recommendation and that was where we had already
talked about saying examine your portfolios first and look how you can already
build it in and where there are gaps. So that that becomes, we have to figure
out where we’re going to put metrics, but anyway, this becomes sort of a
statement of findings, this is just the intro, this is just the intro, this is
background about the sorts of areas where research can be done, what we’ve
learned it does, it’s helpful and that it actually gives some understanding of
the nature of the questions within each of these areas. Then you save all of
your recommendations and all the recommendations are in a language for the
second part of the section.

DR. COHN: Mary Jo, for the interest of organization you’re suggesting that
this additional information go right before —

DR. DEERING: Somewhere down there, you might marginally tweak the initial
opening paragraph but maybe not much.

DR. COHN: I guess I’m not at all, I mean given the way this format is I’m
not sure that I think metrics need to be any other place —

DR. BAUR: I think that Steve has done very well in including it in the last
sentence in that very first paragraph, he’s brought in the development of
metrics for implementation and impact.

DR. COHN: So I would leave metrics I think as we have it in the new version,
consider that to be a solved problem.

DR. BAUR: Are there other possible places you’d want pilot studies besides
CMS? That’s recommendation two.

DR. STEINDEL: I think that’s up to the committee, the reason why I
specifically put the recommendation as pilots for CMS is because that was the
sense of the discussions on the conference calls. But I think there are other
areas for pilots outside of CMS it’s just that I don’t think we explored them.

DR. DEERING: I think my point was going to be, and what tweaked, it wasn’t
particularly the fact that when we think of CMS we were recommending in the
area of chronic disease management and the reality is what are the chronic
diseases and who owns them, NIH has very powerful community interventions and
other research agendas and pilot projects in the area of heart disease, asthma,
diabetes, they’re the ones who actually do a lot of the research and it’s not
just biomedical research, they’re doing intervention oriented, they’re almost
doing health services research in all those areas. So I think it would be an
oversight not to include those agencies that have other research programs and
services in areas where we think those are most promising to do pilots. And I
think it’s almost important that if you leave them out they’ll probably go and
do it anyway and I think that this is a way of reminding the department that
there are multiple agencies that have portfolios related to these issues.

DR. STEINDEL: My response to that, Mary Jo, is the sense, I think there was
a sense on the workgroup that we need to spell out CMS needs to do pilots
because CMS is not active in this area and that we support CMS doing these
pilots and adding some information, whether in the form of information or
recommendation, that these studies are already going on in other HHS agencies
and should continue, I think that strengthens things and I would support adding
it. But I think CMS needs to be called out specifically because of the fact
that they’re not in that area and the Secretary needs to know that there’s
support for that.

MR. HUNGATE: Observation, off wall a little bit, the emphasis on research
agenda in an employee benefit sense commits the government to a slower pace of
implementation then the private sector. It’s almost a commitment to follow as
opposed to lead and so I would argue that if we really wanted to put a
leadership step forward we’d argue for a pilot within OPM within the, to create
a learning experience for federal employees which relates to what’s going on in
the rest of the world. I’m not impressed with the speed of actuation of
research agendas coming from the just do it school as opposed to the study it
and think about it school, I make the observation because I think it’s valid,
just feels timid to me.

DR. COHN: Bob, I guess I’m certainly hearing what you’re saying and the
group may choose to make some comments on that, I was having presented at that
CMS open door forum last week, what I was struck by was I think it was
statements being made. Now I don’t know, CMS will do as CMS does but their view
was that they were not going to get into the personal health record system
business and that their view was along the lines of how they could best supply
data, personal health record systems, what concerns they might have, how they
could do it in the most efficient fashion and all of that. Now OPM obviously
might have a different view, we obviously never talked to OPM about what it is
they might do or hear from them about any of their ideas and plans. But I guess
I was just sort of framing it slightly differently. I think as I’m saying that
I’m fully supportive of pilots, are you objective to the fact, is the fact that
we’re calling these pilot studies to be different then pilots or is there an
unclean OPM, I’m not sure that I’m —

MR. HUNGATE: It just feels like study it and I regard study it as put it
off. It’s just, it’s verbal, it’s just the sense of, maybe that’s just me and
I’ll admit that it’s a bias.

DR. DEERING: Actually get back to the section that we were working on
beforehand because I think that’s where it goes, I think that’s where it goes,
I mean you don’t want it to be in the research agenda actually, you want to
make that kind of statement, whatever the committee eventually decides to say
about that it doesn’t belong in the research section, it belongs elsewhere
under us studying its roles —

MR. HUNGATE: I guess that’s valid —

DR. DEERING: It would be a stronger statement there when we discuss roles
and that’s the point you made earlier, we are an employer —

MR. HUNGATE: It’s the employer role that I’m most thinking about.

DR. DEERING: And so if we’ve added it, if we say to explore what it can do
in its role as an employer as well as ta da ta da ta da.

MR. HUNGATE: Steve’s questioning that, let’s talk about it a little bit —

DR. STEINDEL: It sounds very nice but I think we need to take a look at it.
First of all OPM can’t introduce personal health records even on a pilot basis
tomorrow, it’s going to take a while for them to figure out what they’re going
to pilot and OPM actually doesn’t do it, it contracts with a myriad of
insurance carriers to provide coverage to federal employees and what actually
would happen is the pilots would be implemented through these, through the
contract carriers and the odds are they will be the type of personal health
records that would be introduced to their other clients as well —

MR. HUNGATE: Agreed, agreed.

DR. STEINDEL: So I think it’s very nice to make the statement but I’m not
certain it would happen any faster then a research agenda.

DR. DEERING: You know how it would happen faster, is if the statement is
directed not to OPM but to the insurance carriers. In one of our other sections
we’ve decided that we’re going to be speaking to industry and what it should
do, I mean Blue Cross/Blue Shield is making a fairly big commitment to PHRs and
I think it’s using WebMD, it is rolling them out region by region by region and
so to the extent, I mean because Steve is correct, they actual come through the
insurers, if you want that statement to be made it could be made NCVHS observes
that those insurance, those payers who cover federal employees may wish to use
the federal workforce as an opportunity to introduce those PHR products.

MR. HUNGATE: And I would argue for the collection of the information from
that piloting within OPM as a part of the policy strategy relating to PHRs. I
think we haven’t talked about that as a specific component of the
implementation process and I think it is, so I would accept that.

DR. BAUR: I was going to say but on the other hand to sort of disagree
slightly with what Steve said is that I was on a committee in which there was
an OPM representative and he was very interested in the fact, what HHS was
doing related to personal health records and he was particularly interested
because of the strategy around consumer directed health care and that may be
the point of entry is as OPM begins to work with insurers around adding these
consumer driven health care type modules within the traditional packages that
may be one place where as part of the negotiations could certainly stipulate
that part of what has to be offered is some kind of electronic health
management tools of which PHRs may be one and I think that might satisfy a bit
what you’re saying is that OPM is using its leverage to kind of push the agenda
forward but it’s still connected to what the insurers themselves are doing.

MS. WILLIAMSON: And if I hear you correctly, Bob, you’re saying that is the
federal agency as one of the largest employers, if we’re going to push in
support moving towards having PHRs then we should lead in that effort and set
by example, similar to what we’ve done with CHI and saying these are the
standards that we’ve identified, I’m not saying standards for PHR but we’ve led
in saying these are standards that we plan to adopt within the government,
you’re saying let’s move forward with being one of the leaders of saying
federal employees should have PHRs, or at least have that option.

DR. COHN: I think that we, I mean I think we’re saying that there’s a
section in this internal/external where we’re sort of I think, pulling us back
from the precipice for as second, is to say that in its role as employer,
obviously we talked about all these roles, should explore and potentially pilot
as appropriate PHR applications, I guess it isn’t they shouldn’t do PHR
applications, they should basically be encouraging the use by their employees
or whatever. And I don’t know, I’m trying to think of how much more strongly we
want to go beyond that, I mean I don’t think we want the government out of the
chute given that we don’t have any interoperability, I mean we don’t have firm
interoperability standards here, starting to promulgate them out of the, out of
where, so that’s a slight problem there. But I think that there, I mean there
is certainly a place for pilots which I think is what the point you’re bringing
up, maybe we just need to come up with the right wordsmithing words that aren’t
charging ahead with great abandon but beginning to move into the area. And I
guess I see the role of the government where there’s lead, follow and then
there’s somewhere in between —

MR. HUNGATE: Lead, follow, or get out of the way —

DR. COHN: Well, I don’t know about that, but I think there’s somewhere in
between there the government as a researcher, as an insurer and whatever, and
maybe a little further ahead then it might be as an employer, and that’s I
think a question, I don’t have the answer to that one, I know that we’ve talked
to that so I think we ought to try to be not to strong in our recommendation
given we haven’t —

MR. HUNGATE: I understand —

DR. DEERING: It could be framed as we heard because we actually heard from
more then, I’d have to go back and check but this has come up in testimony
before, many, many, many people have pointed out look, you’re an employer, you
use OPM, try the federal employee health benefits plan, so in the extent that
we mirror that kind of language we heard that the federal government might
explore ways to use the federal employee health benefits plans as a vehicle for
promoting the assessment, the use and assessment of PHRs.

MR. HUNGATE: The question is whether it should or should not or how much, to
what extent, there are questions around it, that’s fine —

DR. COHN: And at that level I think we’re all in favor.

DR. DEERING: I think it’s a statement of fact that that sentence is a valid

DR. COHN: Okay, so we’ve got that one handled, we’ve got even the section
for it, now how are we doing with the research agendas? I mean I’m hearing some
wordsmithing and new paragraph after the end of metrics —

DR. BAUR: Late night pizza party to work this out but I just want to make
sure on the last recommendation I would like to tinker with the language of
that one, are people okay with me doing that?

DR. STEINDEL: I have no problem with the tinkering —

MS. FISCHETTI: I would suggest removing it, I think that that is an
assumption that yet is not known and we might be bumping into people if we put
that in and this is that the personal health record will be technically
interoperable with the National Health Information Network, that’s almost a
business requirement that we haven’t done the background work on to know if
that is part of the future technical landscape. I don’t know if that’s
something that we think is absolutely yes, we had this discussion, it should be
interoperable with the NHIN or not but I feel like we haven’t done the
architectural diagrams to get to a point where we could fully understand what
we were recommending.

DR. STEINDEL: I will say why I put the recommendation in, not necessarily
what the recommendation says. The why is because the other two cover everything
except the technical area of the above bullets and I felt I needed a
recommendation to cover the technical area and this seemed like the logical
one, and I did have trouble wording it, etc., so I’m very amiable to changes in

DR. COHN: And I guess the question is and as Linda is talking I’m obviously
reminded that the National Health Information Network carries a lot of baggage
with it —

MR. HOUSTON: Carries a lot of what?

DR. COHN: Carries a lot of baggage, I mean it isn’t connected with an EHR
any longer or connected with your provider, it’s —

MS. FISCHETTI: We almost don’t know what it is right now because of the fact
of the RFPs are out and we’re not even in prototype yet.

DR. COHN: And so I guess the question is, I mean is this something that
relates to connectivity with provider electronic health records? Is that what
we’re really talking about here?

DR. BAUR(?): In supporting Steve’s intention I suggest that we back the
wording up to somehow make sure that the standards for personal health records
are consistent with the harmonized standards that will be used to support RIO
interoperability, National Health Information Network, whatever that future
interoperability big picture whatever we want to call it. So we need to make
sure that PHR standards do not diverge from whatever is going to become the
gold standard for implementation for health care IT interoperability.

DR. COHN: Well maybe this moves to the interoperability section.

DR. STEINDEL: I think it’s already there, it might already be there.

[Multiple speakers.]

DR. STEINDEL: I mean I gave you my reason for slipping in, I also said that
I struggled hard with the wording and I’m not totally happy with it, so I’m
amiable to changes.

MS. FISCHETTI: Your reason for putting it in is right on target, you’re
absolutely right, we need that wording in there somehow.

DR. DEERING: So where are we thinking of putting it, of adding the NHIN
aspect of it to the interoperability section?

DR. COHN: I think we were talking about maybe removing the NHIN, I don’t
know, where did we come to, I was thinking about remove the NHIN and leaving it
a little more broadly around interoperability.

MR. HUNGATE: Could we kind of table this one for a minute until we’ve gone
back to interoperability and then deal with it?

DR. COHN: That sounds good. Okay, so are we okay otherwise with this? Thank
Steve for his work on this section and Cynthia, thank you for your willingness
in advance to have pizza tonight —

DR. BAUR: So is there no recommendation then related to technical research?

DR. STEINDEL: That’s to be determined after we go through the
interoperability section.

DR. COHN: So why don’t we then continue on back into the background section.
Now you’ll notice that the background section now has a nice picture of the
NHII overlapping sort of, I thought it was important, I have a couple of
suggestions here and let me just sort of work through the first paragraph and
see whether the rest of you are sort of agreeable or not.

Obviously we have a new first paragraph here on background and we talked
about, we’re talking, and this is I think work that Harry Reynolds and all of
this did to try to talk about areas which I’m fine about, and we mention about
the needs of patient care population health and personal health. Now at that
point we immediately jump into the personal health area and I’m actually
thinking that there needs to be a sentence or two that talks about the other
areas and dimensions before we jump immediately into personal health —

DR. DEERING: We have them in the other report that we could just —

DR. COHN: Exactly, exactly, I just think it would be useful to have a
sentence on the provider areas, EHRs, population health as biosurveillance and
public health and all that, I mean just to sort of set the stage before we
immediately jump into personal health. And hopefully people are agreeable with

Then I also, this actually had to do with my presentation last week to CMS,
there’s a sentence here that says, and this is the personal health area,
includes a personal health record that’s created and controlled by the
individual or family and it says plus non-clinical information such as self
care trackers and directories of health care and public health service workers.
Now I found myself not knowing what non-clinical meant in this respect only
because I would say consider information in a self care tracker to be, it
certainly sounds like clinical information to me, I wasn’t sure whether you
were talking about non-medical, other information such as —

MR. HOUSTON: — directory information or something —

DR. DEERING: We could just strike non-clinical too.

DR. COHN: Well, and the problem is, and I guess I would also say that it’s
basically tools and information is what we’re talking about since trackers are
tools. I’m getting picky here but if I have to turn this into a presentation,
things that tend to make sense —

DR. DEERING: Other information and tools such as?

DR. COHN: That would be fine.

MR. HOUSTON: Where is this?

DR. DEERING: 7th line under background.

MR. HOUSTON: I cannot find it. I got it now, sorry.

DR. COHN: So those were sort of my wordsmithing on the first, did anyone
else have anything else on that first paragraph at this point?

MS. FISCHETTI: The sentence that starts the heart of the vision is so good
and just with wording that dramatic I think it should be the head of the next
paragraph, so either move it up to the top or just make a new paragraph there.

DR. DEERING: Given the way the page breaks and it’s always going to break as
long as the graphic is like that, why we certainly have space to just make a
new paragraph, in other words she just want it to visually —

MS. FISCHETTI: — part of the vision, doesn’t seem right buried in the
middle of a paragraph.

DR. COHN: Well thank you, okay, that’s good. Okay, then we move into the,
are we okay with that paragraph? Anything else anybody sees?

Okay, then the next paragraph which is the next page and hopefully nobody
wants to edit the graphic —

MR. HUNGATE: I’m a broken record on some of these things, we have past
recommendations on functional status information, health status information, it
seems to me when we have past recommendations on functional status measurement
and so on, and health status I think is collectively part of the same thing, it
seems to me we could add that where we talk about plus information such as self
care trackers, we could also include a statement about health status measures.
That’s a natural augment from a personal health record.

DR. DEERING: I think it’s actually, and the reason it’s very easily doable
is that I think it’s all but included in language somewhere in the 2001 report,
I mean like they monitor their blood pressure and sending it in and their heart
rate and all that kind of stuff —

DR. COHN: Do you want to add that to —

DR. DEERING: — such as health status measures —

DR. COHN: Everybody okay with that? Now the next paragraph we talk about our
six hearings and I’m fine with those six hearings. The next sentence I think
sort of bothers me and I’ll read to you what we have and I will come up,
suggest a new sentence there, which once again came out of this presentation I
had to give. Right now it says the workgroup focused on this area because it
was explored less then the other two in which significant policy and program
activity was taking place both inside and outside the department. It seems sort
of like a weak reason for us to be doing this report. I wrote just once again
presenting to CMS last week I said basically we devoted considerable energies
on the personal health dimension, health area, and then I say the reason for
this is our belief in the importance of empowering consumers and patients, both
to manage their health and to be able to work in partnership with their health
care providers. I think that sounds a little better —

MR. HUNGATE: Sounds good to me.

DR. DEERING: Sounds much better.

MR. HUNGATE: We applaud it.

DR. COHN: Okay, so it sounds like we passed on that one. Anything else in
that paragraph? Okay. Steve? Do you want to comment?

DR. STEINDEL: Just the usual Steve type comment, we’ll let it pass.

DR. COHN: You can tell us during the break. Okay, now the next paragraph I
think is pretty clean but others may have comments. Okay, anything else we’re
missing on the background? Unbelievable I know.

DR. BAUR: Other then giving recognition to our tiny little office.

DR. COHN: Oh, that’s why you’re smiling, appreciative of the fact —

DR. BAUR: We want the Secretary or whoever reads this to know that we exist.

MS. FISCHETTI: We heard about VHAs personal health record as well —

DR. STEINDEL: We’ll let you two discuss that, you’re sitting next to each

DR. DEERING: The Veterans Health Administration I have just added, because
that is true, we probably heard from Gary, next to David, I don’t know how
would get the frequent flyer, the frequent testifier badge, David Lansky or
Gary Christopherson, but I think we can put Veterans Health Administration.

DR. COHN: Okay, our next section is personal health records are evolving in
concept and practice. And why don’t we just go over each paragraph and see if
you have any, I think actually the first couple of paragraphs are pretty good.

DR. DEERING: My only nitpicking here is the very first sentence. I think one
of the things that we have observed recently, as recently as when I sent around
the AHIMA email, is that in fact some people are attempting to define PHRs very
precisely —

DR. COHN: Maybe it’s a uniform.

DR. DEERING: That’s what I would like, uniform.

MR. HOUSTON: Rather then did it should be does, does not.

DR. DEERING: There is no uniform definition of a PHR in industry —

MR. HUNGATE: Do we believe there ever will be?

DR. COHN: I don’t know.

MR. HUNGATE: See I’m not sure there will be.

DR. DEERING: Why don’t we just leave it? There is no uniform definition.

MR. HUNGATE: Well, I think —

DR. STEINDEL: Unless we go on and say that we don’t think there could be.

MR. HUNGATE: Okay, if we say that then that’s fine. I didn’t catch that

DR. COHN: We sort of sidestep —

MR. HUNGATE: Because most of this reads to me like we’re expecting it to
coalesce to me, you don’t think so.

DR. STEINDEL: I don’t think so, at least not in our lifetime.

MR. HUNGATE: I don’t think it will either, I agree, but I’m not sure that
the casual reader reading this would understand that.

DR. COHN: I guess the question I’d have for you is whether or not the point
you’re making is an important one for people to appreciate only because I think
the big issue is is that there are now people who are coming out with opposing
definitions, so it isn’t that there will not be definitions out there, it’s
just that do we continue to revolve and I think Bob described it as a real
heterogeneous collection of things. That doesn’t prevent there from being a
definition, and I’m not against having definitions, I think we thought that it
was sort of besides the point.

MR. HOUSTON: The thing that seems to me that you have to think about is that
when there are definitions that are in conflict that lead to the inability to
generate the knowledge from the base then you’ve got problems, and so I’m
trying to understand the range of complexity by all the different disease
centered personal records that are likely to appear because that’s where the
return may be the highest, there are going to be a lot of different definitions
and how do we make sure that those coalesce effectively for health information
generation. That’s the issue that I kind of feel is in here which is what’s the
mix between a lot of detail and standardization and I think in trying to get at
the taxonomy that’s trying to get at what is this spectrum. And I’m trying to
understand where do we expect differences and where don’t’ we expect
differences because some of the is/is not may help the field to evolve. I’m not
sure I can do, I’m just articulating a personal problem in the area.

DR. COHN: Are you articulating a personal problem with the wording here? Or
concept, or what you’d like to see us eventually explore?

MR. HUNGATE: Let me leave my confusion in all of the above.

DR. COHN: Okay, I guess I’m confused too because I couldn’t tell from what
you were talking about about whether or not your issue is, as we observed is
that this is a new area and that the definitions are continuing to evolve and
we question whether there actually will ever be precision and so in a sense
what we try to do is to adopt an approach that more looks at different axis —

MR. HUNGATE: And I’m comfortable with that, I didn’t read that from what I
read, that’s just a general feeling.

DR. DEERING: I’m just wondering whether when we get down, I mean we do say
that we have observed, we have a recommendation for promoting greater clarity
but our recommendation which is on page five, it just says that we are trying
to provide a framework for describing the differences. In other words we are
implying that we foresee, for the foreseeable future there will be differences
and the sum total of our work is to help provide the framework to accommodate
those differences and describe the differences. So does that at least assuage
your concern that we’re implying that there should or ought to be or will be

MR. HUNGATE: Yes, although the recommendation does not follow a clear
statement of the reason for the recommendation.

DR. DEERING: So almost like a preparatory phrase, given the likelihood that
the concept and practice will continually involve for the foreseeable future,
NCVHS recommends —

MR. HUNGATE: That would be clarifying for me.

DR. BAUR: I have some really strong concerns with that because it almost
implies that we’re just going to kind of sit back and let the market take its
course and I mean the whole, I mean a framework for describing differences, I
mean I don’t know that such a thing has ever existed, I mean I don’t even know
really what that would mean and why we would care about a framework for
describing differences. I mean that, I thought it would be a framework that
allows at least some kind of common discussion, every PHR might not look the
same but at least you have to have the ability to kind of talk about it across
different organizational and other kinds of boundaries because otherwise you’ve
just got everybody sort of running around doing their own thing and that’s not
a framework. I’m really confused about a framework for differences.

DR. COHN: Well let me make the following comment, one, I agree with you —

MR. HUNGATE: And I do too.

DR. COHN: And I think earlier on we talked about this as a framework for
characterizing rather then describing differences, I mean that’s in the third
paragraph, we’re talking about characterizing the elements. Now the other piece
is is that are we really recommending that HHS develop and promote or are we
really recommending this framework, that HHS adopt this framework for how to
describe and characterize. Do we think this is good enough yet? Or do we think
they should take this framework and further refine it and promote it? I mean
somehow going through all of this and then saying I want you to come up with a
framework seem to be sort of missing something.

DR. DEERING: Let me only observe that you all have copies of AHIMA’s report
in front of you somewhere and the only reason I mention it now is if you go to
Appendix A, which is probably found behind page five of five, starts out one of
five, five of five, then they go to Appendix A, then they have the attributes
of the PHR. I’m not asking us to necessarily go through those item by item, in
fact they do track quite closely. I mean I think a framework is emerging which
I’m only calling attention to this Simon because I think the time has come when
we can say it appears a framework is emerging to characterize the varieties of
PHRs and their functionality and we propose that the department begin from what
we’ve offered, or begin from this one and help try to consolidate a consensus
around this framework.

MR. HOUSTON: The RFI that’s currently on the street from CMS regarding PHRs,
I would think that the purpose of the RFI seems to me in part would be in order
to gauge what, at least get a sense of what is out there on the streets in
terms of PHRs and their features and functionality and things like that. And
wouldn’t it be, should we frame our recommendation in terms of, how do I say
this, should we be careful maybe not to frame a recommendation that is going to
maybe conflict with the information that’s going to come in through that RFI?
Or should we frame our recommendation in a way to evaluate the RFI to address
key principles that we think need to be part of a PHR? I don’t know —

DR. COHN: I’m not quite sure I understand —

MR. HOUSTON: We’ve got this RFI in the streets —

DR. COHN: Yes, and it’s already out.

MR. HOUSTON: It’s already out —

DR. COHN: It already has its questions.

MR. HOUSTON: Right, and I’m a little afraid that if we try to characterize
what a PHR is or a framework for differences in light of the fact that there
are RFIs out on the street, they may be getting other information in addition
to or more detailed information then what we’ve collected. And I guess I’m just
trying to think how do we make sure we don’t do something that, how do we make
sure that we don’t provide a recommendation here to the Secretary that sort of
flies in the face of maybe what they pulled together from this RFI? Or how do
we —

DR. COHN: Have you read the RFI?

MR. HOUSTON: I’ve read it and I’ve read pieces specifically on security and
the like so I was more interested in those questions then anything else but
yeah, I read through it.

DR. COHN: The reason I mention that is because I don’t think that they, I
mean they certainly are not going forward saying that a PHR is a narrowly
described thing and I think that, I mean we presented this framework discussion
to them last week and I mean I didn’t hear them feeling that it was completely
irrelevant. I mean I think the issue gets to be is is that, I mean we heard a
lot, I want to remind everybody, we heard a lot of people coming forward
talking about their PHRs. Now their PHRs went all the way from portals to EHRs
to portals from insurance companies to free standing quasi EHRs that a patient
enters information into towards new things that have happened even since we’ve
last held our hearings. And they’re all as far as they’re concerned PHRs of one
sort or another and I think it’s very important that we come up with some sort
of a way of being able to adequately describe them so that we understand what
they are because trying to come up with a value concept, I’m going off on a
tangent and I apologize but I mean I think that the ability to understand the
value is related to the ability to understand what it is these things really
are. And if they’re all PHRs then how would you judge? I mean you wouldn’t be
able to tell what —

MR. HUNGATE: I get the sense that the RFI is really to collect information
about the landscape out there, what are PHRs and what should they include —

DR. DEERING: No, I actually think that, I unfortunately glanced at it once
but I didn’t look at the security one so I don’t know that as much. I remember
thinking to myself with a slight smile on my face that it began with a
description that’s almost as variegated as ours about what’s there and I
remember, and here was the smile on my face, gee, they said it better then we
did, they actually sort of ran through the variety of things that are out there
and the whole purpose of it was what should they be doing, that to me was the
sum total of what they wanted to hear was what should they be doing.

MR. HOUSTON: I agree with that, I agree with you, I’m doing a bad job of
sort of commenting on this.

DR. BICKFORD: Carol Bickford, American Nurses Association. This discussion
sounds like there should be a recommendation coming from HHS calling for
consensus standards development in this area, it would be the industry and the
people engaged in this discussion so that there’s standard definition and
characteristics, we’ve got lots of things floating around outside. ASTM had
done some work on the PHR sometime back, why can’t that not be resurrected and
revisited so that there is a stake in the ground, so there is an understanding,
if you’re looking at doing research one would sort of want some standardization
in there, if you’re looking at interoperability capabilities, if you want
clarification of the PHR and its relationships to the EHR or a subset of the
EHR or whatever that is, it would seem that it would be important standards
were, they could be fast tracked, we know how to do that I would think in
relation to some of the models from HL7 and some of the other standards bodies.
But it would seem that there needs to be some industry consensus and that
includes the health care consumer because this is theirs.

DR. DEERING: Carol, thank you very much for reminding us, I hope you picked
up a copy of the report back there, if you look on page ten we do have a
recommendation but it comes under the interoperability section but its wording
is broader then interoperability and I’m happy to see that many of the topics
that you were getting at. On top of page ten under recommendations,
interoperability, it says encourage standards development organizations to
identify essential datasets and definitions for PHR systems and I think we’re
trying to get — [off microphone] — and some of them are on a functional
level, some of them are on a data element level, and we wanted to sort of
broadly state that there’s work going on —

DR. BICKFORD: I guess I’m reacting to the language in this section where
you’re addressing right now and it’s in the second paragraph and it’s the last
sentence saying the PHR itself and the PHR system are intended to be used by
the patient unlike EHR systems which are intended to be used by health care
providers, to me that’s not what it is because some of us in the concept of the
EHR envision that there is, patient population has access to EHR, they are
using that, that there’s sort of a continuum. So some of the statements in here
and what I was reacting to is the word definition of EHR versus PHR which may
not necessarily be where we are in the standards environment.

DR. COHN: I think this is just further confirmation that there’s not a
common definition or understanding of this. Thank you, I think you’ve provided
a very good reminder of why we were trying to come up with a framework rather
then a strict definition. I mean we’ve gotten too close to a strict definition

MR. HOUSTON: I’m looking at the RFI right now, I guess they’re asking the
same questions about what should be in a PHR, they talk about interoperability,
questions of interoperability and things of that sort so I guess back to my
question or comment that we have one, is this an area where we should be
trolling right now as an RFI is out on the street asking sort of the same
questions? Is this our response sort of in a way, a round about way to what
they’re asking?

DR. COHN: Well, if we have enough vision to know that they were going to
come up with an RFI —

MR. HOUSTON: [Comment off microphone.]

DR. HUFF: Part of what, one of the thoughts that came to my mind as I read
this, the thing that I sort of, building on what Linda had done in other
previous versions, I think that’s a thought for a taxonomy but not a taxonomy
for a thoughtful characterization of dimensions that in fact does health care
even have. And the way that it’s here now it’s a mix of sort of presentation of
those dimensions and then a statement about some system, we some systems like
this, so it’s a mix of two things, it’s not just saying the dimensions but it’s
making some other statements about some PHRs do this and some PHRs don’t do
that and other things. So I guess I’d like to see more separation of those two
things, I would like to see, I guess I would like to see the dimensions stated
in a more pure form sort of in a sense, sort of just a top down description
because I think in a way there is, they’re derived, well, I don’t know if
derived is the right word. And then if we want to comment about certain systems
have these characteristics and certain systems have those characteristics then
that would be done, well, I’m not sure to what extent we even need to say that
in this situation or not.

DR. COHN: Well, help me with this, I’m not sure that, I mean we’re using
sub-bullets which I think is what you’re reacting to and actually I like use of
axis or dimensions or whatever they came up with — [off microphone] — I’m not
sure that the person leading this would be the descriptions or really these are
almost examples of the variety, the pluses and the minuses to many of these
dimensions is showing people the variation, and I don’t know that things are
heard on that. Now maybe formatting here is wrong in the sense that they look
like further prescriptive items but I guess it might be just collapsing that
and just having bullets or axis and that’s it, it’s really casual for the
non-expert would certainly be a very dry rendition of axis and not very

DR. DEERING: Maybe again, just offer the editorial, technical, mechanical
approach. One of the inconsistencies comes under the last three, at least the
second to the last three, in other words there are several that say we found,
we found, some do not, information content, source of information, features,
and then dropping down to the end who authorizes, it’s all very clear that
these are examples, we’ve heard that, so it gets away, so I think it reinforces
Simon’s point of what we were trying to do is say these are the axis and this
is what we heard about the variations within them. In my mind the two bullets
about maintenance and where the data resides being so cut and dried are what
causes perhaps that sense of inconsistency is that it looks a little bit more
like a formal description whereas in fact even those bullets if they were just
wrapped in text that says we heard that or we found that or examples include or
the variations include, in that kind of introduction language to be parallel
with the other sub-bullets —

DR. HUFF: In terms of the content itself, I mean comparing sort of what is
in bullets now, one of the things we said above I think is worth repeating in
here, that is who is the intended user, we think that’s actually one of the
cardinal principles here, whether it’s intended for use by the patient, whether
it’s intended for use by health professionals, care providers, quality care
review, who it is.

DR. DEERING: To present a formal recommendation that we put who uses it as
an axis?

DR. HUFF: Yes, subject to the committee but that was my suggestion.

MR. HUNGATE: In a sense if you’re saying this is a market, then a market
tends to define its users —

DR. HUFF: Say that again.

MR. HUNGATE: If you’re really talking about this as a market then the market
tends to define the user, so somehow the user becomes the market even if
somebody else supplies a new product. So the tethered personal health record,
the end user is the patient or individual even though supplied through another
market power. But the reason the provider supplied that was because it gave
them market powers.

DR. HUFF: But again, I mean the purpose of this is so you can talk
coherently about systems that, you can look at systems, you can characterize
the systems by these axis and then you can go on to say and systems like this
cost more, cost less, more effective, less effective, whatever, and that’s one
of the key things. I mean what distinguishes a portal from essentially just
being an EHR is in fact that you’ve got user interfaces designed for a patient
to use as opposed to a nurse or a physician.

MR. HUNGATE: Now what I’m trying to work through in my own mind is what’s
the way these things mesh when there’s one is developed by the Peanut Allergy
Foundation for all patients with peanut allergies who maintain their personal
records and how does that get, how does the content of that get meshed across
the portal with what you’re talking about. Part of that’s the interoperability
issue but I think it also is the categories, the framework that’s being talked
about here where some things are characterizable in that framework and some
things are very specialized and develop under a different control system
really, and I’m trying to understand how the framework deals with a long term
control system of the meshing markets of disease centered groups say versus
provider groups versus things like WebMD.

DR. COHN: I think that this allows you to characterize those differences, I
mean at least that’s the best thing I can tell you in response, I mean it
doesn’t handle sort of long term issues but I think it does do a reasonable job
of doing that. Now I would obviously like to have us move in and through this
section, we seem to be talking a level higher then this section so I would
actually like to somehow engage. And I’m happy to give people a ten minute
break since it’s a little bit after 3:00 but I do want to somehow, John Paul, I
guess I have to ask you, I mean you’ve gone down to the RFI as somehow an issue
here and I guess what I want to say is that in my view that is not an issue,
the fact that there’s an RFI that came out on the street while we’re writing
this letter will not either help or dissuade us from making the recommendations

MR. HOUSTON: It gets at the CMS RFI also, which I think is focused on its
role with its users, specific Medicare and Medicaid, I over generalized it.

DR. COHN: I think if whenever there’s an RFI on the street you can’t comment
at all we’re going to be in a lot of trouble going forward.

MR. HOUSTON: I agree with that.

DR. COHN: So I think the real issue is, I guess I would give us all a ten
minute break, when we come back let’s look through this I think given that
we’ve already talked about certain stylistic modifications to make people feel
better but I think I would, I mean from my view I thought that the axes or,
described as elements or axes or whatever are obviously very helpful. Now I
think we have to decide among other things what the recommendation really is
around all of these things —

MR. HUNGATE: It’s the expectation that comes from the framework that I’m
uncertain about.

MR. HOUSTON: Say that again, Bob.

MR. HUNGATE: it’s what is the expectation that comes from the framework that
I’m uncertain —

DR. COHN: And I guess the expectation would be is that you would have a
better understanding of what the it is by using a framework then you would

MR. HOUSTON: I think Bob was stuck on the word, not stuck on because I look
at it now and I read it and I say okay, that doesn’t make sense to me either,
but the word differences in the recommendation —

DR. COHN: Yeah, we would come up with better wording then that, let’s sift
through the body and then we will get to the recommendations and make sure that
we have the right words and I absolutely agree with Cynthia that these are, I
mean basically we need to come up with better words on the recommendations, we
also need to say exactly what we’re recommending.

DR. BAUR: Because if you just leave people with a framework describing a
bunch of chaos you haven’t really moved much further. But I just wanted to put
one other sort of I see a central issue for defining and I think the exchange
between Dan and Bob kind of captured this, the role that somebody is in, if
they see the Peanut Allergy Foundation as their PHR provider is that not a
patient role, that is not the relationship it has with that kind of
organization, it is a consumer, it is a member, it is an advocate, it is some
other role. So I think the language here in paragraph two that we were talking
about actually is very telling because somehow patient information and patient
slipped in there when the PHRs are all about being in a different space —

DR. COHN: The patient and consumer —

DR. BAUR: Right, I mean it really has got to be either consumer or
caregiver, Gary Christopherson used the word person, I mean but it’s got to be
something beyond the role of patient or you’re back with the EHRs. And I think
that goes to part of what you were saying too is that, and Stan was saying, if
you say very clearly that it is, whoever that end user is is the axis, whatever
role you’re in at the moment, member, advocate, consumer, patient, whatever, we
can’t, I don’t know that we can envision all those roles that people might have
vis-à-vis all the organizations that could be suppliers of these things.
But I think clarifying that language I think in many ways, that’s the core
concept here because that’s the person who does all of these things we’ve now

DR. COHN: Okay, let’s give everybody about a ten minute break and let’s see
if we can sort of continue to charge through there.

[Brief break.]

Agenda Item: Continue Discussion of DRAFT Letter –

DR. COHN: Let’s move from sort of the high level conceptual discussions into
sort of a paragraph by paragraph look at all of this if that’s agreeable to all
of you in this section and then we’ll sort of go back and reflect on did we do
this right or not, that’s about the best way I can think of approaching this at
this point because we’ve spent a lot time talking about sort of the high level
things, I don’t know where it’s gotten us exactly, but I think we are deciding,
I mean we are coming forward with a letter, I don’t think that there’s anything
horrific about this area but it does need improvement, but that’s true of
everything. So Linda, do you have a comment before we start going paragraph by

MS. FISCHETTI: I’m just wondering, in our conversation it always makes sense
to us when we do our storytelling of where we were trying to come up with a
definition and then how this helped frame our conversation and how we believe
that then once we have framed the conversation that would have implications for
patient education or evaluation systems or whatever. And so I wonder if we just
need to do more storytelling as to how we got to needing to characterize
aspects of the PHRs versus this is a framework that needs to go forward and
just say that this was a useful characterization for us and then facilitated
our conversation.

DR. COHN: That all sounds good. Now can you tell me exactly how you’re
thinking that we should do this, I mean is this where we take the examples
under each of these and lay them out or is it more that we held hearings and —

DR. HUFF: I was thinking along the same lines but not quite as radical, I
mean one of the things that, so I mean of the things that I think was left out
that actually Bob pointed out was that we didn’t actually ever say we don’t
think there’s a single definition, that it’s useful to try and force a single
definition on a PHR at this point —

MR. HUNGATE: I think that you ought to state and not with a qualifier.

DR. HUFF: I actually don’t think it is possible —

MR. HUNGATE: I don’t think it’s possible, I don’t think it will ever be
possible to get a single definition. You can get a framework which encompasses
all the patient records but I don’t think you can get a definition.

DR. COHN: Well, let’s talk about it, I mean I can certainly go either way, I
guess I’m a little concerned us making statements that you can never define
anything ever as opposed to making it a little more time limited, I mean it
just makes us look silly if someone looks at this in a couple years.

MR. HOUSTON: I think that based upon our opening paragraph where we talk
about President Bush’s vision where he talks of a PHR, I think sort of the barn
doors are open and the horses is already out of the barn, I think if you want a
working definition of a PHR you almost have to go back now to what he has
described which is in my mind clearly in excess of what I think we all think of
PHRs, at least I think of PHRs, so I sort of agree with Bob which is we’re all
going to sort of have our own opinion towards what one of these things is and I
really, I have to agree, I have to question whether we’re ever going to get
something that’s really —

DR. HUFF: Maybe we don’t need to say that, I mean again can we pull Linda
Fischetti’s, maybe we could say look, what we found is that people had such
different views of PHRs that we found it more useful to characterize them based
on their attributes then to try and argue about the definition.

DR. COHN: I’m not disagreeing —

[Multiple speakers.]

DR. COHN: I guess what I’m wondering is isn’t that what we’re saying?

DR. HUFF: Well I think we did but I don’t think we said it clearly.

DR. COHN: Okay, well maybe let’s figure out how we say it clearly. Mary Jo
can you be of any help with us on this one?

DR. DEERING: Maybe not exactly on the spot but probably by tomorrow morning
because I think I hear what you’re saying, I do definitely hear what you’re
saying and it’s just a question of exactly where to put it and how to put it.
It could be, my initial instinct is to put down in the third paragraph —

DR. COHN: That’s sort of where we’re talking about.

DR. DEERING: And to find a place there and instead of then going on with
however it’s possible to characterize and to lead into that in some way by
again characterizing why we’re doing it and how we got to what we’re doing. So
again, I’m not finding something exactly on the fly but I’m comfortable that I
think it fits there without a whole lot of shoehorning. So somewhere in that
third paragraph I’ll add why we don’t think it’s, that we do not think it’s
useful at this point in time to press forward for a definition however we find
it is useful to characterize them by their attributes and in fact we do believe
that we have, we would like to propose that it’s possible to align them along
this. In other words this jumps ahead to then the concern that John raised in
that given this kind of an introduction I would push back and agree with Simon
that yes indeed we do feel comfortable offering a preliminary framework based
on what we’ve heard, we’re offering it as a preliminary framework that seems to
encompass what we’ve heard, it can be taken and moved forward —

DR. HUFF: It could be augmented, enhanced, I guess my thought is that it
doesn’t matter what they find I don’t think you would ever invalidate what we
have here.

MR. HOUSTON: I agree with that.

DR. HUFF: You could imagine people adding other important dimensions somehow
that maybe we didn’t think of because we didn’t have that view of it or
something, something along the lines of what Bob was talking about, who’s the
sponsor, there’s not an idea of a sponsor in here per se which is a little
different then, I’m not sure how it plays exactly but anyway, but I think that
that still wouldn’t invalidate the ones that we do have.

MR. HOUSTON: Well, I guess one of the questions that I have is is it useful
to describe the interplay between a PHR and an EHR as a way of differentiating
PHRs? Or do we want to stay away from that in its entirety?

DR. HUFF: Well, as I thought about it, what this really is actually is a way
of characterizing all electronic health records and so you could use this
framework actually as a way to distinguish different EHRs as well as you could
PHRs, and so you think of the whole spectrum and you could use this to
discriminate PHRs from EHRs and different categories of EHRs and the whole
space there.

DR. COHN: John Paul, actually in the second paragraph we actually try to
make a comment about the variation in terms of this space, experts often use
electronic health records and then basically here under sort of the axes or the
dimensions —

MR. HOUSTON: Look at the first bullet under the first one, scope of
information, some PHRs do not contain patient clinical information which means
that some do, and I guess that’s where I —

MS. FISCHETTI: The second bullet can be improved, I think the second bullet
can be improved to specifically call out being populated by EHRs, excuse me,
the second bullet under the first bullet, we don’t have, under scope of
information and content, the second bullet under there, you’re right.

DR. COHN: That help?

MR. HOUSTON: That helps.

DR. DEERING: Populated by EHRs.

MS. FISCHETTI: If Stan is going to start making this a bit broader we should
probably go back and pull in some of the original wording about stewardship,
ownership, some of those health information management concepts that I had in
the original diagram that I can pick up and send to you, so a vendor might be
the steward of the information but certainly they don’t have any authority over
these, they don’t own the information, that sort of thing.

DR. COHN: I guess I’d prefer not to get into ownership if we can avoid, I
mean just because we don’t know what it exactly.

MR. HUNGATE: To an extent authorizing access implies ownership.

MR. HOUSTON: You’re right —

MS. FISCHETTI: So stewards of the data thinking that they are able to
authorize access.

MR. HOUSTON: But let me tell you, there is going to be a conflict here and I
know this is a little bit of an aside, but like under Pennsylvania state law it
says very clearly that the institution owns the record —

DR. COHN: This is not the section for us getting into definitions of
ownership, we’ve commented elsewhere that ownership is a very difficult complex
legal term —

MR. HOUSTON: If you tether a PHR to an EHR in Pennsylvania I would argue
that immediately we are the stewards and the owners of the record whether, you
could argue that point and that does make things a little bit more —

DR. COHN: But I guess the question is is I mean, Stan, you had actually
looked at the original axes, you were the one who sort of distilled these out
and you chose not to do stewardship, ownership, custodian, was that the third
one —

DR. HUFF: Actually it was in there, in the list that I, well, let’s see,
there are two things here, what I called it is who holds the record rather then
talking about ownership or other stuff —

PARTICIPANT: Would that fall under maintenance of the record?

DR. DEERING: I think that’s the one that Steve changed to maintenance of the
record from holds the record, that’s the bullet I’ve had the biggest trouble
with and I’m not sure I believe we’re saying what we meant to say so if you
could expand on that maintenance or holding of the record that would be helpful
for me.

DR. HUFF: There seems to be an important dimension, there are two things
here, well I’m not sure, what I had down is who holds, owns, maintains the
record, which is that it’s on the patient’s home computer, it’s on a smart card
that the patient holds, it’s in an independent third party, essentially a PHR
bank, the provider holds it, a payer holds it, and there you’re using some of
the same words, there’s also sort of the technology that you use, is it on a
smart card, is it a database that’s accessible via a network, is it private, is
it a private database, is it on a network, is it web accessible —

DR. COHN: That was under one bullet?

DR. HUFF: Those were two different bullets —

DR. COHN: Oh, okay, because you’ve got two different ones here.

DR. DEERING: So the top one, instead of maintenance, he included holds,
owns, maintains —

DR. HUFF: And maybe that’s part, because holds I’m thinking of who controls
the device on which it resides and maintains I think actually comes back to who
can contribute information to it. I think maintains is actually covered under
the other bullet and I think we’re conflating the two in this —

DR. DEERING: Maybe a way to clarify it and I think this is what was
bothering me, take the second of your bullets that now reads where does the
data reside and be more explicit and say what technology and use the word
technology there, because that was what was confusing me, the difference
between maintaining it and holding it versus where the data resides. If we
change that bullet about where the data resides to something that’s explicit
about what kind of, on what technology is used or what kind of technology is
used —

DR. COHN: EHR a technology?

DR. HUFF: I guess I would say what database technology is used, smart card

DR. DEERING: Storage device is not a database —

DR. HUFF: Storage device is better, how is the data stored —

DR. DEERING: How about instead of resides where is it stored, where is the
data stored, is that plain English, where is the data stored? I’m trying to get
away from the word storage device in the higher level bullet because we’re
trying to come up with more, we’re trying to get more user friendly high level
categories I think.

MR. HUNGATE: I don’t have any trouble with the categories that are here in
terms of the features and functions as distinct from who maintains the record
which is who changes the content, to where the data resides which is a mixture
of technology in place, it’s a custodian in the terms I think you were using,
authorizing access tends to get to the ownership.

DR. DEERING: But I’d like to get back to that, just to be clear I understood
you saying, and I want to make sure that everybody is comfortable with the
bullet that reads maintenance of the record, the entities responsible for it.
My issue there is employers, I don’t think we heard anywhere any of the
employers that are offering this that believe that they are responsible for the
personal health data that’s in the record. And I think that’s getting away from
what we’re trying, what I thought Stan and Linda were trying to get to here so
it’s not so much the bullets that I have, I mean the sub-bullets, patient
independent third party, those are more like sponsors, and maybe I would almost
take out the patient there but again, I’d just like you to spend a little bit
of extra time on that bullet there because I think there’s a lot of hidden
inconsistency or uncertainty behind it.

DR. HUFF: So there are three things that I thought of there sort of related
and maybe confusable. Who holds or houses the record, does the patient got it
on a home computer, is it an EHR that the provider is holding, is it a payer’s
database, all those kinds of things. The second one is what kind of storage
device, is it a smart card, is it on a database that’s on the internet, is it
in a private database at the provider’s place, that sort of stuff. And then the
third thing is the source of information which gets back to who maintains it
which is who can add data to it which, and I think those, I think we have all
of those three in there but I don’t know if we named them in a way that makes
them easy to —

MR. HUNGATE: That ones feels, the way you’ve described it, feels to me like
it’s the supplier of the record, whoever pays for it.

DR. BAUR: Well Mary Jo may kill me for jumping in with this comment at this
point but I mean I think it’s worth asking why is this so hard to talk about, I
mean we’ve been at this for quite a long time and we’re all pretty well
informed on this and I guess why at this stage still I think it’s worth asking
do we find it still so hard and maybe that’s worth trying to capture on paper
more then the actual things because I mean if we’re still at this stage of the
process trying to figure out what belongs in what category and some of these
issues it’s really that issue that the department has to grapple with in a way,
I would suggest, but I know that kind of takes us away from this task of what
belongs, kind of putting these things in different categories but it’s kind of
a different way of thinking about the problem, even though we know all we know
at this point, we’ve heard from lots of people, we’ve talked about these things
many, many times, why is it so hard even for us to try and describe this. And
that seems to me the essence of what the issue is here on what a PHR is or what
the function of the PHR is. Does that make sense or not? You’re looking puzzled

DR. COHN: No, no, I’m sort of thinking, I’d ask others for comments, I’m not
sure that, we’ve been through this a number of times and part of the problem is
is we keep trying to change the wording to make them more user friendly and
this gets to be that issue between well what does the high level concept, what
does the high level concept mean to begin with, victims of technical-ese, what
is a sponsor really versus, and so we try to make them simple and I think we’re
also trying to figure out right now if we’ve got the right wording. I think
you’re trying to reflect on is whether this is confusing is where I think you
were going.

DR. BAUR: Well and in a way I mean because people said well yes, this is an
area with a lot of heterogeneity and we can’t expect consensus at this stage,
but I think if a lot of the recommendations are on policy issues the department
has to tackle, investments that you want to encourage the department to make,
but we keep coming back to the fact that we still don’t know precisely what it
is and people don’t want to kind of nail down what it is, but in a way at some
point you just have to say it’s this, it may be all those other things but for
the purposes of policy making and investment and all these other things you
want the department to do it’s this. Now how you get to that, it can be a very
open, collaborative process, there could be RFIs, things like the open door
forum, there could be all kinds of things to elicit so that sort of the
majority of people come along in that process. But I’m just saying how much
time is it going to take us to come up with the right language here when we’ve
already been at this for quite a while trying to come up with the right
language. Is that even sort of a doable thing or is that really part of the
process that still has to happen and is not so much what the committee itself
does, because it’s hard and there still is not agreement on this. I mean I
think we kind of keep skirting around this issue about does agreement matter or
not and I think our process here illustrates that agreement does matter,
because if we can’t come to agreement on what to call these individual
categories how do we expect 65,000 people to kind of get behind this and do all
the work that’s being suggested by these recommendations. Does that make sense?

DR. HUFF: I guess I thought we were really pretty close to agreeing on

DR. DEERING: I thought we were down to one bullet myself.

DR. HUFF: And the other thing is I think, yeah, you could by fiat say okay,
we’re only going to fund PHRs as defined by this and that’s one way you could
do it. If you have the authority then you can make that definition, you could
say a funded PHR is this because we’re the ones who determine funding, but I
think that would be a big mistake, I think what you would really rather have
them say is we would like to fund some systems that do this and we’d like to
fund some systems that do this and find out how those things impact cost and
quality of care and user satisfaction, etc., and characterize the systems
rather then saying this is the definition and this is what we’re going to fund.

DR. DEERING: I had again, you know me, I eventually get down to words,
individual words, and again I agreed with Stan, that I thought we were only, at
least speaking from my own level of confusion, my confusion was over the bullet
that currently reads maintenance of the record because I do, I think I’ve
understood what you were explaining and all the others and we can work a little
bit on where the data is stored or housed, etc., and it seems to me that I had
another verb that jumped into my mind and maybe it doesn’t make any difference
at all and maybe it doesn’t move us forward, but it was more like hosts, it’s
similar to sponsor but somewhat different.

MR. HOUSTON: And you’re talking about this as a word for maintenance —

DR. DEERING: Instead of maintenance, and again, I’m happy to go over what
you just said again but, again, I think we all agree that that’s the section
that we’re a little bit, that’s the only one that we’re still struggling with
and so maybe, because we agree it’s not who enters the data, we’ve already got
that as a separate category —

MR. HOUSTON: So I think synonyms that I would think there for maintenance
would be holds, houses, hosts, any of those I think I would be happy with.

MR. HUNGATE: I heard the word sponsor, does that not fit?

DR. HUFF: I think sponsor implies paying for it, that may be a different
independent axis from these —

MR. HOUSTON: Or custodian is another way to express this. If the patient is
the custodian they’re also the owner, I mean I would say it would be hard to
say it’s anything other then that but I think there’s a way to —

DR. COHN: Why don’t we try custodian?

DR. DEERING: Custodian of the record —

DR. FISCHETTI: And I like that for the patient education component, we
really want people to understand the difference between custodianship and

DR. DEERING: Who is custodian of the record, okay, thank you.

DR. HUFF: I had two other thoughts on this and this is one of those things
where how much detail do you want to get and let me just throw them out and I’m
happy if you just say no, that’s not important, that’s not, so one thing I had
actually I think came from Linda’s slides too is the degree of standardization
and ability to interoperate which is is this, because I see a spectrum of these
things where people are just throwing in text documents with whatever name they
made up for the document versus things that are coming in with standard names
versus things that essentially are coming in as HL7 OBX segments that are
standard structured coded stuff and I can compute against them. So that was
again, I think it’s a real thing, whether it’s more detailed then we want to
say here I don’t know.

MR. HUNGATE: Well it seems to me that’s a separate bullet under features and
functions offered —

DR. COHN: I actually think that’s a function and feature, let me ask, I tend
to think of it as a separate major bullet or do you think it’s under functions
and features?

DR. DEERING: Well, let me explain sort of the logic that went into it not
showing up because I’m inclined to put it in but having talked to why it didn’t
show up at least especially for his radio talk. As you initially laid it out
and as you just did here you gave very specific, very technical parameters in a
way, a spectrum —

MR. HOUSTON: I’m making a database in my head.

DR. DEERING: Exactly, exactly, and so we were trying to make sure that we
didn’t get into too deep techno speak in the radio language so I think at the
time we took it out. I think the other reason why I was a little more
comfortable taking it out initially that I may back up on is that in fact none
of them are actually standardized, I mean none of them, even EHRs right now,
there’s limited data standards —

[Multiple speakers.]

DR. DEERING: But how many EHRs would you say are actually standardized? So
we don’t have formal standards for the EHR yet.

DR. HUFF: I would suspect almost no EHR is standardized, what they will do
is have an export/import capability that’s based upon standards, which is a
different animal.

DR. DEERING: Well, that’s why I wondered whether it’s, since no EHRs are
currently really standardized except maybe they use specific things, I didn’t
know, so I just wanted to put that on the table.

DR. HUFF: And as I presented it here I sort of expanded the name because
that’s what you really care about, is it’s ability to interoperate, for
somebody else to be able to compute against the data if you share it with
another system.

DR. DEERING: So is it the degree of interoperability that we want to put

DR. HUFF: I think that’s a much better name for it.

DR. COHN: I guess including capability to import/export.

MR. HOUSTON: My comment before also goes back to that whole issue of, how
did you characterize it, I forget, what did you call it if the EHR were not
just go away but if there was some type of —

DR. COHN: Marketplace failure.

MR. HOUSTON: Marketplace failure.

DR. COHN: Isn’t that a nice way of describing that?

DR. HUFF: This is the last one I got and that was the approach to security
integrity and non-repudiation, is this an open record and people just put
whatever they want in there and you don’t know where it came from and you can’t
tell who it came from, or is this in fact something where we’re doing
public/private keys and I can in fact say Dr. Jones really said this on this
date and time —

MR. HOUSTON: Is that the purpose of the PHR?

DR. HUFF: There are some physicians who are saying they would only use data
from a PHR if in fact it was —

MR. HOUSTON: That’s a good point.

DR. HUFF: — that kind of data.

DR. COHN: And let me ask on these last two because actually I’m fine putting
them in, the question is do we at that point put in parenthesis see section on
security and authentication for this last one and the one —

DR. HUFF: These are two I thought of and I’m not going to feel back if you
say that’s too much detail —

DR. COHN: I don’t know that that’s too much detail, I just don’t, I think we
might well put them in these bullets and then refer people to the other section

DR. DEERING: How about technical features and then putting interoperability
as one of those bullets and security —

MR. HOUSTON: Stan brings up a point which I think, I do not conclude in the
technical requirements for authentication access control, not an ability, which
I think is probably inherent, or should be, is this concept of non-repudiation,
it’s not in there as a recommendation.

DR. COHN: When we get to it why don’t we see if we need to put it in.

MR. HOUSTON: I would argue that yeah, we probably need to.

DR. HUFF: I think that’s a nice way to do that.

DR. COHN: So we have a bullet called technical features or technical and
security features?

DR. DEERING: I was going to put technical approach —

DR. COHN: Technical approach, okay, sounds good.

DR. DEERING: And it will include interoperability and security

DR. COHN: You guys are doing great work, thank you. So now a very small
element here on the third paragraph before we got into all those bullets we
have something called a series of key elements, these are not really key
elements, are these key axes or what are these? This is page three, the third
paragraph, second sentence, where it says basically we go through and describe
these things and I don’t know what they are but I don’t think they’re elements.

DR. DEERING: I literally just ran out of words, I had had category as a verb
to categorize —

DR. HUFF: You could call them attributes, key attributes.

DR. COHN: Key attributes, okay. And obviously we’ve talked about now getting
rid of patient, or patient/consumer/caregiver, some sort of way of where we
have patients connected to PHRs.

MR. HOUSTON: Or the attributes or the axes.

DR. COHN: I like axes but I don’t know, I’d be happy with either.

MR. HOUSTON: Attributes, I mean I just think of an axis, a lot of these
things sort of line really on the scale, what is the PHR, is it on some axes,
along some continuum —

DR. COHN: Axes or attributes, either one.

DR. HUFF: I’m okay with axes too. The word attribute ties in well with the
literature about characterizing and classifying because things are
characterized and classified by their attributes. That’s the typical way to
talk about it in —

MR. HOUSTON: He’s more learned then I am so —

DR. COHN: Shall we defer —

DR. HUFF: Well, we want it to be consumable by mere mortals too —

MR. HOUSTON: Attributes is probably more readable to somebody who —

DR. DEERING: I actually think attribute is more readable then axes.

DR. COHN: Okay, let’s go on then. Okay, so I think we’ve made changes now to
all these bullets, now after all these bullets there’s a paragraph having,
which I actually thought was pretty good, the framework characterizing and
describing the differences among PHR —

DR. DEERING: How about just describing various PHRs and PHR systems?

DR. COHN: That’s probably a good way —

DR. HUFF: I think you either need to do that or else you need to say
describing differences and similarities, the goal is to be able to know what’s
the same about these and what are the differences, I mean it’s a comparison
basically. Characterizing and describing I think would work —

DR. DEERING: Various PHRs.

MR. HOUSTON: What did you say, characterizing what?

DR. DEERING: Characterizing and describing various PHRs and PHR systems, and
take out the differences among.

MR. HOUSTON: I think what you’re trying to do is characterize the elements
the comprise the different PHR rather then the PHRs themselves.

DR. DEERING: The attributes of various, of different PHR? You’re not
characterizing, I guess you are, it could be —

DR. HUFF: Characterizing, well, I yield to the man from Pittsburgh, however
you want —

DR. DEERING: So what would you say?

MR. HOUSTON: I’m just saying we don’t, I’m not sure how to say it and I
don’t think we want, we’re trying to talk about the framework, we don’t, we’re
not really talking about specific PHRs, we’re really talking about it’s just an
abstract discussion of how —

DR. COHN: The attributes of, you said basically describing the attributes of
various PHRs and PHR systems, I think that sounds fine.

DR. DEERING: And the only thing I want to add here is that I heard earlier
that you are comfortable and actually would like us to use language either here
and/or even at the paragraph before the list of attributes that actually says
we are offering a framework for initial consideration, in other words there was
discussion earlier before the break that we are actually again not recommending
this but we are offering this framework as a starting point. Do we want to fit
that in there somewhere? It could go in there, it could also show up, it could
also be echoed in the recommendation.

MR. HUNGATE: I think it changes the recommendation.

DR. COHN: As a starting point for further development of. Okay, the next
paragraph, which I thought was actually very good and the fact that talking
about these sort of tightly coupled EHRs/PHRs and all of that, I found the last
sentence to be a little confusing, it says while stand alone PHRs could
potentially contain data from multiple EHRs current lack of interoperability
standards impedes full information between one EHR and a stand alone PHR
limiting our ability to separate the two. That let’s you think hard about that
sentence, I found that one to be sort of mind boggling. The question is what
are we trying to say there —

MR. HOUSTON: Shouldn’t we rather then speak in the negative since there’s
always other activity going on around standards, shouldn’t we in some way just
simply state that these PHRs need to embrace the standards that are being
adopted around interoperability of EHRs in order to ensure that there can be
good exchange of data between PHRs and as well as between EHRs and PHRs, I mean
there’s, I think both are relevant not just interchange between EHRs and PHRs
but rather even PHR to PHR or —

DR. DEERING: My only point is there was initially an entirely different
sentence there, remember this is just a description of what we see out there, I
mean it started life as a description of what is out there not what ought to
be, and it was a discussion of whether those that are views into the EHR and
are tethered to them and then there was a statement about the PHRs and what
they could do. This got modified to its current sentence which linked it more
tightly back to the interoperability issue so part of the decision for you all
is what message do you want this particular paragraph to give.

MR. HUNGATE: When I got to the end and read that sentence I thought it was
going to say limiting our ability to achieve the full patient record.

MR. HOUSTON: Our is a bad word then, limiting the ability —

MR. HUNGATE: Limiting our ability to create the President’s vision —

DR. DEERING: Could it be just put a period after stand alone PHR and delete
the last phrase? Put limiting and just end it at stand alone PHRs could
potentially contain data, a current lack of interoperability impedes the flow
of information between them.

DR. COHN: Well, while a stand alone PHRs could potentially gain information
from multiple EHRs the current lack of interoperability standards impedes the
flow of information between EHRs and stand alone PHRs?

DR. HUFF: EHRs and stand alone PHRs. I like that, the one thing that I would
say actually though that changes the emphasis somewhat is the lack of adherence
to interoperability standards, we actually have standards that would allow this
to happen today, people just aren’t adhering to them. If you used HL7, LOINC,
and SNOMED you could send all of the lab data in an interoperable way today.

MR. HUNGATE: That’s a good point to make.

DR. DEERING: Can we just delete the word standards, the current lack of
interoperability impedes the flow.

MS. WILLIAMSON: I don’t think we need that beginning while stand alone PHR
systems could potentially contain data from multiple EHRs, just start at the
current lack of interoperability standards impedes the flow of information, the
current lack of adherence to interoperability standards impedes the flow of
information between any one EHR and stand alone PHRs which limits our ability
to —

DR. DEERING: — removing the first phrase because otherwise again, otherwise
there’s no statement in there, I mean the first half of the sentence points out
that the data is limited to what is stored in a specific provider’s EHR —

DR. COHN: I think getting rid of standards there is very helpful.

DR. DEERING: So just get rid of the word standards there and it’s a lack of
interoperability and it’s due to both a lack of adherence to and maybe a few
extra standards.

DR. COHN: Are we okay? Okay. The next paragraph looks benign —

MS. FISCHETTI: Do we want to add something in here while we’re talking about
the consumer that since there is not a large consumer demand at this moment in
time now would be the time to start the education campaign, so if we wanted to
have influence on how consumers sought out and evaluated EHRs for their own
personal use now would be the right time to do that.

DR. DEERING: We’ve got the recommendation about public education after the
next section so I’m just asking you to hold that thought and see whether it’s
something to allude back to at that point.

DR. COHN: Now I thought the rest of the things getting down to this
paragraph before the final recommendation, I thought those were, I mean I
didn’t see any big issues here but I will comment on the last paragraph, I
found myself sort of going I think I should know what this means but I don’t
have a clue, where it says many testifiers observed the PHR system is bringing
health care into line with other service sectors. And I feel like I should know
what that meant, there’s something here that I’m missing and I don’t know what

DR. DEERING: I guess what —

DR. COHN: What did we mean —

DR. DEERING: It meant in terms of offering self service, the financial
sector in particular, that people now have banking online and they control the
way their money flows and they can import and export their money, I think it
was almost always the banking system that was mentioned most frequently, that
everybody says I can use my ATM card in France and so that was where people
were going —

DR. COHN: But the example here isn’t ATM cards in France because that’s the
National Health Information Network example I think, because those records
don’t give you an ATM card, from banking maybe, maybe it’s the better example
because I’m feeling embarrassed because I don’t do home banking —

DR. DEERING: Online travel reservations, you control your travel, you
control your mortgage, you can apply for a mortgage online —

DR. BAUR: Just saying other electronic and automated services, is that what
you’re referring —

DR. COHN: Okay, thank you.

DR. DEERING: In other sectors then, with electronic and automated services
in other sectors.

DR. COHN: Now I understand.

[Multiple speakers.]

DR. COHN: Now what does our recommendation look like at this point? I think
we actually do have a recommendation but I think it’s different then the one we
have here —

DR. DEERING: To build upon, is it more a sense of building upon?

DR. COHN: Basically build upon our additional framework —

DR. HUFF: Or differentiating personal health records —

DR. COHN: Or characterizing the attributes of, characterizing the

MS. FISCHETTI: [Comment off microphone.]

DR. COHN: Common understanding?

MR. HUNGATE: Promoting vendor specification of their products is really what
you’re trying to aim at so that there’s truth in advertising on the vendor
side. I think it’s a piece of it.

DR. COHN: Mary Jo, how did we do on that?

MR. HOUSTON: What’s the recommendation sound like?

DR. DEERING: I think it says that we recommend that HHS build upon our
initial framework for characterizing the attributes of personal health record
systems, including their expected functionality, for the purpose of promoting
common understanding and, well, let me push back, do we usually have purpose
statements in our recommendation?

DR. HUFF: Or just simply make a common framework, I mean I think it’s
already —

DR. DEERING: It’s an important point, maybe we when we get done maybe we go
back and, well actually in the paragraph under our attributes list it says
agreeing on a framework for characterizing and describing the attributes of a
PHR system will be extremely helpful in promoting understanding and appropriate
use of any given PHR system, it could serve as a basis for public education
efforts, highlighting the benefits and risks, you’ve not only ta ta ta ta ta
ta. Does that get what you wanted to say?


DR. DEERING: Okay, so we don’t need a purpose statement, so let me read what
I think I had again and you can tell me if we’re close. That HHS build upon our
initial framework for characterizing the attributes of personal health record
systems, including their respective functionality.

MR. HOUSTON: Why would we need to say including their respective

DR. DEERING: We don’t need it now because we’ve got functionality actually
right up there as an attribute.

MR. HOUSTON: So it’s part of that framework we’re sort of giving them as a
straw man so I think it’s almost —

DR. COHN: The other question I would ask is whether or not that
recommendation should be closer to that key paragraph since it really
describes, and if we do that how does it mess up the rest of the section here

DR. DEERING: Well, again, a reminder that some of the stuff about the market
and other things used to be under values, under the value section, but it got
moved up in the version that Steve did a few weeks ago. What I’m hearing you’re
saying is that you almost wish that the recommendation followed immediately
after that —

DR. COHN: Well it would make a lot of sense since we’re looking at and
saying well that explains why we have this recommendation and it gives a real

MR. HUNGATE: So do you move that paragraph down —

DR. COHN: Or do you do something with these other four paragraphs —

DR. DEERING: Find a new home for them.

DR. COHN: Or a new title maybe right there, or maybe given the title —

DR. DEERING: Well, let me just go back a minute, it could well be that we
move them up to the top of this section to become a new, come after the current
second paragraph, the current second paragraph talks about it’s limiting, it’s
too static, it provides additional software tools, it’s intended for use by,
then we could go into these four —

DR. COHN: That actually might not be bad.

MR. HUNGATE: I think it seems okay.

DR. DEERING: Well the other option is that there are a couple of these that
are really, I mean the last two, the strong support for PHR systems is really a
value proposition as is the last two of those four paragraphs I argued earlier
really belong under the value section. I do believe that the descriptor of the
PHR systems being integrated in the EHR system belongs in the definition and
characterization but that’s the only one that I’m absolutely sure clearly
belongs in the evolving concepts and practice section, the one that says that
they’re most integrated. The other three that we heard that the market stand
alones is different, that there’s strong support for them, that it brings them
in line with other service sectors, I think could be moved elsewhere. Want me
to play with it or does anybody have any strong ideas? Or do we just pretend
Simon never said what he said?

DR. COHN: I would defer to all of you in terms of what you think on that.
We’re doing real well aren’t we? It is 4:30.

DR. HUFF: Well, I think they need to be moved somewhere, I think it does
strengthen the recommendation if you have, that paragraph that talks about the
value of having a characterization and then have the recommendation, I think
that’s a stronger way. So I would support moving the other paragraphs

DR. BAUR: Well and those two paragraph that Mary Jo was talking about, I
mean I think that somehow the paragraph after the next table where it says
market drivers and it is talking —

DR. DEERING: That’s where they were, that’s where they were originally.

DR. BAUR: I think they make more sense there.

DR. COHN: So we’ll play around with that, I mean see where the paragraphs
are good, we don’t have to necessarily review them in their new location. So
where did you think these things should be?

DR. BAUR: It’s in the next section after the value proposition table,
there’s that one sentence and then there’s a paragraph about market drivers and
that’s where, it seems like that paragraph on strong support, I mean you’re
sort of talking about market drivers there in terms of consumers and their
interests —

DR. DEERING: The value section is now quite truncated in terms of text, it’s
got the table, it’s got a couple of short paragraphs and jumps into a

DR. BAUR: As people know I have my own issues with public education on this
topic but particularly if you’re going to leave that in there as a
recommendation I think there’s going to be a lot more justification then there
currently is.

DR. COHN: Okay, so we’re doing some reorganization and now you’re saying
that we need it, I guess we should ask about the next section since we’re going
to jump into that, so we’ve got obviously this large set of value propositions,
we’ll be adding some I think other comments here, and we still have that
recommendation sort of hanging out there —

DR. BAUR: — [Comment off microphone.] —

DR. COHN: Will it be helped by those other paragraphs or is it still hanging
out even if other —

DR. DEERING: Well here’s another thing we could do come to think of it, we
could put the public education recommendation back as the second recommendation
under definitions because it actually builds exclusively from the prior

DR. COHN: It talks about the framework —

DR. DEERING: So to me the prior section has all of what you need by way of
background to justify the second recommendation. The first one says let’s get
this framework, let’s agree on it, the second one says let’s use this framework
for as the basis for public education.

MR. HUNGATE: How did you decide which section to have first? The one we just
finished or the value one?

DR. DEERING: Originally the value one came first, I think the whole value
one came first because we were just thinking more —

MR. HUNGATE: That was kind of my intuition —

DR. DEERING: We start off by saying how valuable they were, and then at one
point we decide no, this issue of definition is such a struggle for us that we
really need to put it up front, also to explain why we’re using the term record
system, so that was our logic.

DR. BICKFORD: Carol Bickford, American Nurses Association. You’ve been
talking about the personal health record, trust in personal health record
system occasionally, but now you’re talking about the value of the system, is
that truly what you’re addressing? You’ve sort of interspersed personal health
record, the title is personal health record value propositions, your heading is
personal health record systems value, so there’s some inconsistency. Is it the
system, is it the individual personal health record information?

DR. DEERING: It’s the system and I think you’re very good to catch that, I
think the table header needs to have the word system.

DR. BICKFORD: Then has there been clarity in the other section identifying
what constitutes the system? Because I didn’t see that but I haven’t read this
exquisitely, you sort of toss it out there and it’s a given, you’ve identified
that the personal health record is, there’s no consensus on what constitutes
and I would assume that a similar thing holds true for the system, so what are
its bounds —

DR. DEERING: Well I think what, maybe I’m getting at the wrong side of your
question but that table is not our statement of the value, it’s basically we
heard, it says testimony indicated and so again, what we’re trying to say there
and the second sentence even summarizes it from various perspectives —

DR. BICKFORD: I understand but my question is in relation to systems versus
personal health record. So if this constitutes what the testimony was about,
was it about personal health record systems, the big global, not the personal
health record. You’re sort of teasing out characteristics and then you throw in
the systems value proposition so it’s a bit confusing for people, I mean it’s
certainly a confusing issue but you can do a great deal in clarifying whatever
it is you’re describing with attention to those details. Am I understandable?

DR. COHN: Yeah, no, actually you’re causing me to sort of mull over here
about what we can do with the section.

MR. HUNGATE: Well, I think it raises the question, I know I looking through
here don’t see where we have defined personal health record systems.

DR. DEERING: The second paragraph of the prior section, personal health
records are evolving in concept and practice.

MR. HUNGATE: That doesn’t define them.

DR. DEERING: Yes it does, it says a personal health record, toward the
bottom of that second paragraph, it provides additional software tools that
assist in the management of, we’ve got patient information but we’re going to
change that.

MR. HUNGATE: I’m lost —

DR. DEERING: Personal health records are an evolving concept and practice,
page three, second paragraph about two thirds of the way down, the second

MR. HUNGATE: All right, so a personal health record system provides
additional software tools that assist, that’s the definition.

DR. COHN: I do think it really brings, however I think there is a more
fundamental —

MR. HUNGATE: To me the system includes the inclusion of information from the

DR. COHN: It depends.

MR. HUNGATE: I understand but —

DR. COHN: That’s what we heard, it depends.

MR. HUNGATE: So the personal health record system is may or may not —

DR. COHN: Just like a PHR may or may not. Linda, we’re starting tomorrow at
8:30. I mean that was the conundrum that we had during our testimony is that we
tend to think very holistically on this stuff and some PHRs do not have it,
some do —

MR. HUNGATE: Then I think we have to put some qualifiers in the value
statement don’t we? In terms of is it really the system, what is the
understanding of the system when people give testimony, because that’s the
table but what are the assumptions that like avoiding duplicate tests, that
assumes that you’ve got EHR I think, doesn’t it?

DR. DEERING: How about something like the following, in the header for the
table saying key value propositions for PHR and PHR systems as, I mean again,
maybe even reiterating in the title as described by testifiers because again,
we never asked them to say okay know before you tell us what value you see what
is it that you’re referring to, they all talked from various perspectives so it
is technically impossible actually for us to do the exact crosswalk —

MR. HUNGATE: I understand, so it seems to me that we have to express the
inability to do the crosswalk, to say that because of the framework and
variability within the framework these values exist to varying degrees in
individual product offerings, present partly in some, maybe all in some, highly

DR. DEERING: Again these were perceived, this is not that we’re saying that
they do actually exist in different product offerings, in fact a lot of these
people, were not talking about any specific product offering at all, most of
these value statements came out of more generic statements that were founded on
very undefined terms.

MR. HUNGATE: I hear you but it seems to me we’ve got to express the
limitations of the table.

DR. COHN: Well we sort of say it earlier on when we talk about functionality
in the title, we obviously need to put that into the text, there’s probably a
sentence or two that sort of talks about, given the heterogeneity of these
systems —

MR. HUNGATE: A general qualifier.

DR. COHN: The value, values below obviously vary with the system however, I
guess I’m trying to think of some way that doesn’t dig us in deeper on this
one. Cynthia, do you have a suggestion on this?

DR. BAUR: On the whole table?

DR. DEERING: A title for the table. Or the qualifier sentence.

DR. BAUR: Well, I guess what’s the key idea that you want to communicate
around the value, that there are these value propositions, I mean that I think
might help in terms of titling the table. If somebody just looks at the title
of the table, other then the fact that these might be value propositions what
is it that you want them to understand about these value propositions? Because
I think in a way you could use it to sort of help you frame, if this
recommendation is moving and I’m not entirely clear this recommendation
belongs(?) all that well with our table, is there even going to be a
recommendation off of this idea that there are value propositions?

DR. DEERING: No, I think the recommendation is moving.

DR. COHN: Steve, welcome back, we’re looking at the personal health records
value section, page five, and we’re thinking that the recommendation is going
to move up to the previous section, and we’re actually trying to figure out
what to do with this whole section because really I think the information is
good, it doesn’t quite —

DR. BAUR: Well what do you want the Secretary or HHS to know about the fact
that these are the value propositions?

DR. DEERING: Well, I can only say that it’s considered very helpful in
identifying purposes, functions, priorities —

DR. BAUR: Does it really belong in the previous section though? I mean is
there a reason to have it as two separate sections? Is it more sort of
explanatory material before you even get into the functionality? If it’s a way
to help people understand the functionality issues —

DR. DEERING: No, here’s why I also know we qualify we had the value section,
and remember that at one point the talk about the market was under this and
what they were doing, and this was as much about economics as anything else.
Remember because we had two economists talk to us, we had Stan talking to us,
and people really wanted to say to the extent that PHRs, the only reason we’re
looking at them is because they have a consumer market life to them, then we
want to try and describe what are the value propositions that are by audience
and then there was this narrative underneath that talked a little bit more
about market dynamics.

DR. BICKFORD: Carol Bickford, American Nurses Association. I know that when
you were going through the content you clearly identified that patients had to
be carefully attended to and shouldn’t be incorporated in the language, but you
have it interspersed within this table and it’s confusing. For example you have
consumers and then you have patients and their caregivers, then you come
through some of the recommendations particularly evident in the discussion for
providers where it talks about quality time with patients, payers promote payer
information across plans, so if you’ve been trying to be attentive to personal
health as being persons and consumers not necessarily the patient concept, now
you’re introducing that in this table so it may merit some discussion at the
front end and it is present in those locations.

DR. DEERING: I think it’s because these are sort of like role based, we
separated consumers from patients and caregivers because it was consumers
absent a clinical relationship, that they didn’t actually have to be sick, they
didn’t have to be anybody’s patient, it got to the wellness proposition, the
lifelong self care sort of stuff. And then patients and caregivers as you have
a disease, you’re taking care of it, you’re in a relationship with a doctor and
you’re either managing a chronic or an acute illness. The providers, the reason
I think we put patients and providers and payers is that they relate to people
only as patients basically, I mean providers certainly only don’t relate to
general consumers, they only relate to a patient in a relationship with them,
they don’t go out to their community and speak to the general consumer in the
community —

DR. BICKFORD: That’s assuming that provider is dealing with pathology and
you could have a provider who might be a fitness trainer who would not be
looking at their patient population as a patient. So it’s a health care, it’s
related to health and wellness rather then the pathology which is our
connotation presently. So I’m just pointing out that there’s some discrepancies
in how it’s being presented, and I don’t know you’d be able to do it better. So
you certainly have more value for everybody else except the health care
consumer, or the person who’s the primary focus of this, so it’s benefits to
external stakeholders in this relationship or potential external uses,
secondary uses of primary data like Stan was talking about perhaps.

DR. BAUR: Is it reasons or motivations too, I mean in addition to benefits?
Maybe that’s the intention of value proposition, you’re trying to capture all
of that by using value proposition but maybe that’s not entirely transparent as
a term.

DR. DEERING: And again to the extent that this is what we heard, this is not
us trying to define what we think it ought to be, this is sort of the way we
heard about it as it was presented to us and people would say well here’s what
it does for payers, and here’s what it does for providers, refers to various —

MR. HUNGATE: Why did we feel it was important to separate the category
consumers from patients and their caregivers? See my inclination is to
eliminate the line between and call it all —

DR. DEERING: Consumers, patients, and their caregivers —

MR. HUNGATE: And drop the difference, the separation there.

DR. DEERING: I think you’ve got some head shaking there because that
medicalizes, the consumer gets subsumed, but again, I’ll just put that on the

MR. HUNGATE: Well, it’s a continuum —

DR. BICKFORD: If you frame it from the perspective of consumers and their
caregivers that can be health, it can be wellness, it can be illness, and then
you move into the medical model which I think supported the external
stakeholders —

DR. STEINDEL: I’m sorry I’ve missed a large portion of this discussion so I
may be off in what I’m saying, but I prefer leaving the two boxes, I think
consumers is a different group then when we’re dealing with people who are
dealing with illness and there are different value propositions to both. Now
eventually a consumer does become a person but we’re talking about value
propositions, if we’re looking for a widely received consumer oriented public
health record, whatever that is, that we wanted everybody in the country to
adopt, and we wanted them to use it and we told them the reasons for doing it
were what’s involved with illness, it probably won’t hold much traction. So I
think it’s important to separate the two boxes.

MR. HUNGATE: Yeah, but I heard Dave Scherb(?) say specifically about his
son, that he wanted his son in the first category and not in the second
category although he was managing diabetics, he was managing his condition of
diabetes. So I disagree with your wish to totally separate because I think we
have many facets, if we’re healthy on part of our system and are a consumer on
that part and we may be diseased in another part.

DR. STEINDEL: Well if we’re looking at it that way, Bob, it’s all a
continuum because providers eventually become patients —

MR. HUNGATE: I agree.

DR. STEINDEL: So I think just saying because there is a continuum between
them doesn’t necessarily mean we shouldn’t draw a line even if it is arbitrary
saying that there are different distinct differences between the groups.

MR. HUNGATE: Why should I draw a line here when I don’t draw line between

DR. HUFF: Well, I think the purpose of this going back to the question
earlier is because you’re trying to tailor to individual groups who read this
what the value to that group might be. And so it doesn’t mean that a given
person couldn’t in fact accrue benefits from more then one of these categories,
it’s just that it’s a way of focusing attention to say if you’re not sick right
now here’s a set of things that are of value to you and if you get sick here’s
another set of things that are valuable to you when you are sick, that’s all.

DR. DEERING: Would it help if we, again words, if the left hand column is
simply labeled roles?

MR. HUNGATE: Well perhaps but under patients and their caregivers it lists
support timely appropriate preventive services. Don’t you want consumers to do

DR. BAUR: Yeah, but you can’t get that unless you come into contact with a
clinical system, I can’t get my flu shot unless I get a provider to give it to
me, I can’t get my colonoscopy unless I get a provider to give it to me.

MR. HUNGATE: But the information system still wants you to know, your
personal health record could have a prompt for what’s appropriate, without any
connection to the system. I’m just having trouble with why the distinction is,
I hear what you’re saying, Steve, I’m just disagreeing with it.

DR. COHN: Bob, let me just stop for a second, I’m going to call the question
on this one. But I also suggest that if you have a better idea, I’m hearing
more complaint then I am the answer to this problem and I’m not clear there’s a
perfect solution here, I the question is how upset we are with this and do you
have a suggestion that we should consider and then we can vote up or down?

MR. HUNGATE: I’d make the line in between wavy, given the nature of the
discussion, to say that the distinctions between these are very fluid, people’s
conditions change.

DR. COHN: How about a footnote that acknowledges —

MR. HUNGATE: Fine, I use the term health seeker but people don’t like that
because I don’t like the passive nature of patient, but it’s not an accepted
term and so I don’t push it but the patient is a passivity, when you talk about
a consumer oriented system the distinction is difficult.

DR. COHN: How about a footnote that sort of acknowledges the fact that
people play many different roles in the health care system and that the lines
are somewhat arbitrary? I think that’s the point you’re making. Now let me ask
a bigger question here, which is I’m looking at this section —

MR. HOUSTON: I think arbitrary is a bad term. I agree with Bob and everybody
else’s point but there’s a fundamental difference in use though that I think is
relevant in all these discussions about PHRs, again the issue of consumer and
wellness linkages and even if I do use, if I do become a patient or a caregiver
in the second category I still may decide that I have a different expectation
of PHRs in that aspect, in that component, in a PHR that I might have as a
consumer. The case in point I think she brought the training issue, if you had
a personal trainer, I think it was Cathy, if I’m training for something and I’m
using an online format to manage my training and my diet and things like that

DR. COHN: Do you have a suggestion?

MR. HOUSTON: My suggestion is to keep them separate.

DR. COHN: Okay.

DR. DEERING: With or without a footnote?

MR. HOUSTON: The only use of a footnote is to differentiate the two and I
don’t think that’s what the footnote was for, correct?

DR. STEINDEL: Mary Jo, I was very comfortable with your suggestion of
changing the heading use of stakeholder role. And I think that clear defines
that a person may be switching roles.

DR. DEERING: We could if we use the word role, it’d be after the word role,
it could simply say we recognize that people play many different roles in the
health care system, period.

DR. COHN: Now let me ask a particular question, now this is likely to be a
section without a recommendation —

DR. STEINDEL: This is getting back into the table and I assume you want to
move out of the table, this is just something I observed a couple of weeks ago
on the HL7 EHR list serve where I proposed some wording for something where I
used provider and I’ll tell you right now, there was a tremendous amount of
opposition to that, the word provider —

DR. COHN: The word provider?

MS. WILLIAMSON: Because what is the meaning —

DR. STEINDEL: What is a provider, as one person said it makes me feel like a
piece of cattle, or a worker in a cattle ranch or something like that. But
there was a lot of opposition to the word, there was more neutral feeling to
practitioner, but there still wasn’t good traction on that —

DR. COHN: How about physician instead of health care provider?

DR. STEINDEL: And I think Carol Bickford’s comment when she pointed out that
this is extremely clinically oriented, we might want to put the word clinical
in front of it and say like clinical provider or clinical practitioners,
because that’s really the role that we’re talking about, or medical given this
list. I’m perfectly happy with that.

DR. DEERING: Care provider or health care provider —

DR. STEINDEL: Actually the word we finally decided to use in the HL7
discussions, the phrase was actually health care practitioner.

DR. COHN: We’re okay with the table now?

MS. WILLIAMSON: Were you referring to replacing provider only in this table
or do we need to address it in other places within the document?

DR. STEINDEL: I was jut thinking about it with respect to this table. It
turns out NCVHS, we’ve had the tradition of using the word provider in this
context. I was surprised to see the opposition that I had.

DR. COHN: Well, either we need to change it all through —

DR. DEERING: I would vote to keep it myself, I think it is currently the
accepted policy language and this is a policy document so my, I move —

MS. WILLIAMSON: That’s why I question it because I wonder if we’re changing
it here and then the rest of the document refers to provider.

DR. BAUR: Plus our diagram says health care provider.

DR. STEINDEL: So health care provider, and then we can use provider in the
rest of the document.

DR. COHN: Okay, now let me ask a more global question which is we’re moving
this recommendation into the other section, what we have is a draft with three,
maybe four paragraphs, and what are we doing with it, I mean I’d say we can
move this up forward except it’s such a large section that it gets in the way
of, I mean I think the section before is much more important —

DR. BAUR: Well I guess this is where I was framing it, is there something
that you want HHS to think about vis-à-vis these market issues or ROI
issues, they were very prominent themes in the hearings, everybody felt like
somebody had to address the market and ROI issues, so after all this have we
concluded that there’s really no role for the department vis-à-vis
market and ROI issues?

MR. HUNGATE: Yes and no it seems to me, we’ve concluded that there’s a role
in creating a framework which helps the product descriptions which will help
the market to make selections above, whereas I think the value proposition is a
preamble to what the market is going to sort of, these are the elements —

DR. COHN: Well, there’s that but there’s also, I mean to me this directly
relates to the research, if there weren’t value why would we be recommending
research and pilots.

DR. BAUR: I don’t know, I’m just —

DR. COHN: No, no, and the problem I’m having is that’s at the very end —

DR. BAUR: Maybe it needs to come up then if that’s how you see the

MS. WILLIAMSON: You’re saying move the research section up or you’re saying
move —

DR. BAUR: Simon seems the research, the pilots seem connected to the value
proposition then they should probably be up —

DR. STEINDEL: I think from a structural point of view that makes sense to
move the research agenda forward and maybe combine the sections —

MR. HUNGATE: Well markets do research, they decide what sells and what
doesn’t, and it’s cheap, so I think you have to give the market its due as a
relationship, you don’t have to decide all the value in a research way, you may
have to look to find out how the market made its decision which is a little
different isn’t it?

DR. DEERING: We raised some reasons why not to review these two sections. If
we actually look at what we are probably now going to emerge with in the
research section based on introducing the sections that were originally in
there it includes technical research and market research, they don’t
necessarily get at value proposition. So the research areas that we are going
to be talking on are not limited solely to what you see in the value table, so
that’s one justification if we need any, and another reason for not necessarily
trying to push them together is that in good government-ese I think you always
end with a research section so that there’s more to learn, but again that’s
just also an observation.

DR. COHN: I guess we’ll have to look at the next version — [off microphone]

DR. STEINDEL: Besides being an odd issue what’s the problem with that —

DR. COHN: — [Off microphone.]–

DR. BAUR: Or is it going to be something as squishy as you just want the
department to be cognizant of some of the market dynamics and ROI issues and
that the case is not very clear although people have some pretty, there’s been
a lot of information provided about that, something to that effect.

DR. DEERING: It could also be that this concept of consumer protection,
something we’re supposed to come up with about the, I mean looking at there, it
might fit there, that this is actually consumer protection, consumer protection
recommendation here. Let’s see if it fits, I’ll see.

DR. COHN: Now we are up to privacy and then technical requirements for
authentication. Now my question is is do we jump into this now, do we do it
tomorrow morning, what would you like to do?

MR. HOUSTON: Well technical requirements are absolutely perfect so there
needs to be no discussion however —

DR. COHN: I guess I know Maya wanted to be down for the privacy conversation
I think, do you want to take a five minute break, see if she wants to come
down, and we talk about privacy, or do you think, I mean that’s going to be —

DR. STEINDEL: That’s going to be over an hour. It’s either going to be no
discussion or it’s going to be over an hour.

[Multiple speakers.]

MR. HOUSTON: Let me ask a question about tomorrow, we’re going to have
another version of this at some point, correct? So if we spend an hour on
privacy tomorrow and two minutes on the technical, let’s say we spend an hour
and a half between the two, start at 8:30, that means are we going to go
through this again, are we going to look at the red lines, how are we going —

DR. DEERING: That’s my concern, to make sure that I’ve got it right we’re
going to need to go over —

DR. STEINDEL: Well first of all we have privacy, the technical requirements,
and interoperability.

DR. DEERING: Do you want to do interoperability tomorrow? As I recall the
one thing that came up earlier that we wanted to make sure that we paid
attention to was in addition to talking only about interoperability did we want
to get to the issue of the NHIN? That’s one thing I heard that we wanted to
just take a look at this section and see whether it was appropriate to add it,
it came out of Steve’s research recommendations, we wanted to see whether it
needed to be added to the interoperability —

DR. STEINDEL: How we’re going to handle the technical, the missing technical
part of the research list.

DR. COHN: Well guys, here’s where we are, that’s a good point, should we do
interoperability then —

[Multiple speakers.]

DR. COHN: I’m more then happy to arrange a mini conference call —

[Multiple speakers.]

DR. COHN: Take a five minute break.

DR. DEERING: The European Union works through the night to hammer through,
labor negotiations go through the night.

[Brief break.]

DR. DEERING: I hate to get us potentially off but something just occurred to
me, jumping ahead to the recommendation under interoperability, the next to the
last one, it talks about encouraging standards development organizations to
identify essential datasets and definitions for PHR systems, should we take, do
we want to encourage, do we want to move the one part of that about definitions
to our definition section and say well we want HHS to go ahead and move as a
framework, we also want them to encourage standards development organizations
in their efforts in this field.

DR. COHN: Should we divide the dataset and definition recommendations?

MR. HOUSTON: To develop a framework —

DR. DEERING: That we already have our recommendation about that we want to
develop a framework, want HHS to help promote a consensus framework for
characterizing, or do we want a separate recommendation in that definitional
front section that says we also want HHS to encourage standards development
organizations in their efforts to define PHR systems, or to address these —

MR. HOUSTON: My concern is only that, it goes back to my long standing
concern that I suspect many of these PHRs will be developed to support chronic
illness populations and in that sense my fear is that will any framework
adequately address each of the group’s views, the different disparate groups of

DR. DEERING: We don’t have Linda here too because I know that —

MR. HOUSTON: You know what I’m saying? It’s one thing to say sort of a high
level framework which we’re sort of talking about, it’s another thing —

DR. COHN: Why don’t you do this rather then us trying to determine this one,
we’ve got it as a recommendation here, unless we take it out the obvious thing
to do is to stick it at least potentially in that first section and then we can
see if it makes sense. Because remember Linda actually gave us a lot of
information on works by standards development and other organizations, I had to
say it but I guess my question is is, I mean think the role of standards
development organizations is to develop standards, I don’t know whether they’re
any better or less equipped to develop definitions in groups like AHIMA —

DR. DEERING: By definition that’s exactly what HL7 did with EHRs first is
develop a functional standard, that’s exactly what it did, that’s a definition
if there ever was one, these are the functions.

MR. HOUSTON: I don’t disagree, my only point here is I think it is in many
ways it was more extensive, I think it’s probably easier to gain a consensus on
what EHR functionality needs to exist rather then what PHR functions —

DR. COHN: So are we talking about a definition or as functional standard?
And I’m not sure any of us are really quite ready to have the standards groups
going off and start doing that on PHRs at this point.

MR. HOUSTON: I thought Mary Jo was talking about it —

DR. DEERING: They’re beginning, actually HL7 is already working on a
functional standard for PHRs. They’ve been doing it for nine months now, so
it’s just a statement of encouragement, they’re fairly down, because the
reality is that most of the functions there were already in the EHR functional
standards so they just sort of extracted them and organized them.

MR. HOUSTON: Then what I think what we need to do is the recommendation I
think then should be couched in terms of to the extent that standards
organizations are developing standards for PHRs that they need to ensure that
they encompass the broad range of users of such PHRs and take into
consideration the different, in that last table we had, the different user’s
value propositions.

DR. DEERING: This sounds like a we’re not there yet area so I may try to
take a stab at it and see if it belongs somewhere —

DR. COHN: Well why don’t we start at the beginning of interoperability and
we’ll see what we —

Interoperability is not a long section, now I would sort of comment that I
do find an inconsistency even in the first sentence, well no, it’s just, it
says currently most PHR systems require consumers to manually enter their
health data although some PHR systems offer actually are views of the EHR and
at the beginning here where we talk about PHRs, where is it here, most PHR
systems, they are integrated with the provider’s EHR system in effect creating
a portal view of EHR. Now either they’re mostly free standing or they’re mostly
portal views, which is right here, since we seem to have said both there within
this document. My view would be is that they’re both, is that our first comment
is right here which is is that most of them are portal views.

MR. HUNGATE: But those aren’t consumers, those are patients.

DR. DEERING: Well then maybe it is currently, here’s a simple fix, currently
stand alone PHR systems require —

DR. COHN: Consumers to enter —

DR. DEERING: — their data, period.

DR. HUFF: You could say while tethered PHR systems —

DR. STEINDEL: I would just put a period and just cross out the rest. Wait,
no, I think we need to keep the rest in because of the next sentence, none
currently exchange —

DR. DEERING: My suggestion, you’re going to hate me for this, going back to
page four which is what I think you said was the inconsistency in the first
place, I think that paragraph belongs in the interoperability section.

DR. COHN: Well we were wondering where to put that.

MR. HUNGATE: Sounds like a good idea.

DR. DEERING: So why not try to find a way to put that into the
interoperability section.

DR. COHN: Is that okay?

DR. DEERING: And then I’ll fuss with that first paragraph to make sure that
there’s no inconsistency left.

DR. COHN: Okay, so that sort of, that merges with the other one, John Paul

MR. HOUSTON: I just had another comment about the first paragraph.

DR. COHN: Okay, please, we may get rid of most of the first paragraph.

MR. HOUSTON: The last sentence is to remain I think, correct?

DR. COHN: Yeah.

MR. HOUSTON: I would suggest that rather then use the word occurs, which is
sort of in the middle before the comma, that we use the words is available.
Some would argue that some PHRs, some individuals will want PHRs that are
entirely stand alone and based upon some of the privacy discussions where
individuals were concerned about who would have access to and how would data be
disseminated and the like, I think there’s still a group of individuals who
would like to have PHRs entirely separate from EHRs thus this isn’t, this
doesn’t, this particular comment is not I don’t think applicable to all PHRs.

DR. DEERING: Would it help again, words, words, words, if that sentence
begins with, we scratch the word until and we say without widespread exchange
of information ta da ta da ta da ta da systems, comma, the full potentially of
EHR systems will not be realized. Is that getting at what you’re saying?

DR. COHN: I don’t know if that changes —

MR. HOUSTON: It doesn’t really change, my concern is is I agree that for
many PHRs having them integrate EHR information is extremely important but
there are a number of cases and we heard it very clearly from some of the
people that individuals concerned about privacy that they really did not
necessarily want to have that data exchanged so there has to be this concept
of, well, there has to be some mention of that I think in here.

DR. BAUR: Possible but not mandatory.

MR. HOUSTON: Exactly.

DR. HUFF: Well the other, you’re using exchange as in a two way
communication and I think in most cases what we’re thinking about is the
ability for EHRs to send it to a PHR not that PHRs wouldn’t automatically —

MR. HOUSTON: But I thought there was a lot of discussion about where
medication plans, things like that, that that type of information flowing back
to an EHR was also a value.

DR. HUFF: Well, I guess what I’m saying, I’m fine with the change the way
you suggested it but the other way to fix it is to in fact point out that we’re
not getting, another way to say it is that we won’t realize the potential of
PHRs until EHRs can send them data and not talk about the fact that the other

DR. COHN: We can decide to remove this whole sentence, it’s just that, once
again I’m referring back to the NHII vision which this actually is pretty much
taken from, I mean it isn’t just that people want information let in, people
want to have the ability to make appointments, be able to send notes to their
provider —

MR. HOUSTON: Don’t doubt it, don’t get me wrong I think in a large majority
of cases this sentence is on point, I’m just concerned about and having heard
testimony in the Privacy Subcommittee from NHIN and the like that there are
people that are concerned about global access to their information including in
PHRs and I think that that’s just what, we need to be cognizant of that in this

DR. STEINDEL: My response to that is what we’re saying in this sentence is
that until we have widespread exchange of information the full potential will
not be realized, those people who choose not to realize the full potential,
they do so with knowledge.

MR. HOUSTON: There’s going to be a class of users who I believe who want to
use PHRs but will not want their information shared is my only point.

DR. STEINDEL: That’s fine, they just won’t get the full potential, that’s
the statement that we’re making, that the full potential of PHRs requires this
exchange, if you want a subset of the benefits of PHRs choose not to have the
full exchange.

DR. DEERING: I don’t know how we handle that within interoperability section

DR. STEINDEL: No, that’s not to be handled, what I’m saying is aside from
the minor wording modification that John proposed I don’t have a problem with
the sentence remaining even with the proviso on privacy.

MR. HOUSTON: I heard your point.

DR. DEERING: Could you repeat just for my sake how it will read.

MR. HOUSTON: Replace occurs with is available.

DR. DEERING: And add any other sentence?

MR. HOUSTON: Let me read the whole thing, until widespread exchange of
information between EHRs and other sources of personal health data with PHR
systems is available their full potential will not be realized.

DR. DEERING: So it’s available but we’re not saying that it must be used.

MR. HOUSTON: Right, yes.

DR. COHN: So it’s basically the ability to have widespread —

MR. HOUSTON: It’s a nuance but —

DR. DEERING: But another way to reword it might be until PHR systems are
capable of widespread information exchange with EHRs and other data sources
therefore potential will not be realized.

MR. HOUSTON: That’s fine too. That’s probably better. Second paragraph? Can
I make one comment based upon something Stan had said earlier in the second
sentence, significant work is needed on authentication identification of data
sources, I would add as he had indicated previously non-repudiation.

DR. DEERING: Do lay people know what non-repudiation is?

MR. HOUSTON: Probably not.

DR. DEERING: Is there another phrase that we could use?

MR. HOUSTON: Accuracy, to ensure something authentic —

DR. STEINDEL: No, non-repudiation is non-deniability —

MR. HOUSTON: Well non-repudiation goes to the fact that something that is
conveyed is what it purports to be and you can’t deny it, so there is actually,
it is more then just accuracy, it’s if you, it says that it’s accurate and the
individual who sent it —

DR. HUFF: It’s not accuracy, it is that it’s reproduced in the form that it
was created —

MR. HOUSTON: Yes, well accurate in terms of it’s not been changed —

DR. HUFF: It hasn’t been changed since it was sent.

DR. COHN: Given that we have another section here with the technical, with
technical requirements for authentication, access control and ability, which I
think is going to include non-repudiation, let’s see, let’s put it there which
is right before this and let’s leave this as non-repudiation.

MR. HOUSTON: Yeah, I would leave non-repudiation, if we need to you can put
a footnote.

DR. COHN: Well, it will be in the section right before, so basically —

MR. HOUSTON: If you just put non-repudiation here and you defined it in the
section before then you’re fine.

DR. COHN: Exactly, that’s what I’m saying you were going to bring that up in
that section, that’s why I was trying to get us off wordsmithing.

DR. BAUR: Can I just ask one question there? Are we going to make a global
change on patient, going from patient to consumer because there again it’s
patient entered or other and it could be consumer entered or other based on our
previous conversation. So is there going to be, is Mary Jo going to go ahead
and do a global change of where patient is used unless it’s specifically about
the clinical relationship?

DR. DEERING: Where do you —

DR. BAUR: It’s in that string that —

DR. DEERING: Because the first paragraph has consumer right —

DR. BAUR: I think in general we sort of need a consistency across the whole
document and I’m wondering is there —

DR. DEERING: Do we want it consumer/patient?

DR. BAUR: Well, I’m just wondering, is consumer the broader term that we can
use unless we truly mean a clinical context or clinical encounter or clinical
relationship? And that would be true across the document, we don’t have to
identify each use of it but there would be a sort of global edit.

DR. COHN: Well you have to identify each use of it to find out when it
wasn’t patient.

DR. BAUR: Yeah, no, but I’m saying there would be a global edit of the
document with using that —

DR. DEERING: Maybe not by tomorrow morning.

DR. BAUR: I shouldn’t point out every use of it now is what I’m saying,

DR. COHN: So that one might have slipped through, okay so basically the
committee heard broad agreement that a core or limited set of personal health
data is important for PHR utility, although there’s no consensus on a
particular dataset, agreement on specific minimum or core set could help
promote interoperability. So are we okay with that so far? So recommendations

DR. DEERING: Add non-repudiation to the recommendation.

DR. COHN: We have mapping to consumer oriented concepts in terms of the
recommendation and nothing in the document that discusses that, so I’m going to
suggest, let’s see where’s my presentation that I did, I talked about, let’s
see if I’ve got some wording here that might help us in the body —

DR. DEERING: We used the same phrase in the preceding paragraph, we just say
mapping data to consumers, in the paragraph that precedes it, so this is just
verbatim from the paragraph that preceded it.

DR. COHN: Okay, exactly, maybe mapping of clinical, I wrote mapping of
clinical data including medical jargon to consumer oriented information in
terms —

MR. HOUSTON: Say that again?

DR. COHN: Mapping of clinical data including medical jargon to consumer
oriented information in terms.

DR. DEERING: I think that’s especially important to have in the paragraph,
do you need —

DR. COHN: No, we just need it somewhere else, I didn’t even realize it was
in —

HHS should encourage standards development organizations to identify such
datasets, definitions for PHR systems —

DR. HUFF: Can I make one suggestion to this, are you going back to the fact
that some of these of these systems may have different types of data based on
chronic illnesses and the like, say after that sentence, comma, as well as
flexibility to add user defined or PHR defined data elements.

DR. STEINDEL: I think this is worded the way it is which encourage SDOs to
identify essential datasets —

DR. HUFF: It’s that minimum.

DR. STEINDEL: No, that there is the understanding that there’s going to be
more then one dataset —

DR. HUFF: Okay, so that leaves room for PHR defined —

DR. STEINDEL: And that’s why I think it’s encourage instead of being a
little bit more prescriptive.

DR. HUFF: Are there ways, not being a standards person but are there ways to
include user defined data elements?

DR. STEINDEL: My assumption is that these would be data minimum sets and
always be minimum datasets.

DR. HUFF: But how would you get, like if there were specific chronic disease
information, by example here, that you wanted to be able to pass back to an EHR
but it did not have a data type that necessarily translated into this minimum
dataset, this essential dataset —

MR. HOUSTON: Most of these things don’t involve creating a new data element,
they just involve creating a new vocabulary term that is the name of that
observation and so there’s things exist in LOINC and so you can, as long as
there’s a LOINC code or a SNOMED code for it you can save it.

DR. BICKFORD: Carol Bickford, American Nurses Association. In your
recommendation you talk about essential datasets in your second one but you’ve
talked about minimum or core datasets in your discussions so you’ve introduced
a new term of essential, are they equivalent? You have core and limited set of
personal health data so I’m just asking for some consistency in how you’re
using your terms.

DR. DEERING: I think the statement in the paragraph is accurate to what we
heard, I mean we heard phrases like that. I think that because there’s sort of
political sensitivity around the notion of core datasets, people in the
standards world are reluctant to actually use them, this was my interpretation
of how we got there is that core set of a loaded term —

MR. HOUSTON: Carol just wants to be consistent between our paragraphs.

DR. DEERING: I understand, I’m just pointing out that we heard one thing but
what we heard in how people described it versus what we actually tell standards
people we were just making a change.

DR. STEINDEL: And I think in this case it’s appropriate, we did hear one
thing but our recommendation is that we do the essential, they look at
essential datasets.

DR. HUFF: What is the definitions referred to in that sentence, what is
having definitions there add?

DR. DEERING: I think we’re talking about taking it out of this and I was
going to take a stab at seeing if I could come up with something that we were
comfortable with putting up into the definitional section and maybe we’re not
and maybe we won’t but I think I heard that we wanted to take it out here.
Because this is about interoperability specifically, this is the recommendation
in the interoperability section —

DR. STEINDEL: I think this is something that’s hung over from previous

MR. HUNGATE: Question for my own understanding of the interrelationship
between EHR and PHR, are there essential datasets asked for in the EHR?

DR. STEINDEL: Not yet.

MR. HUNGATE: What’s the argument that they’re needed here and not in EHR?

DR. STEINDEL: Just simply because we’re talking about PHRs here and we heard
it specifically for this. That’s not to say that they aren’t needed in the EHR

DR. DEERING: And there is in fact activity going on.

MR. HUNGATE: I can understand its sensitivity because when somebody who has
interest in particular areas has a set of data that gets excluded from the
essential dataset the system ceases to work for them, so it’s a problematic
objective it seems to me. The thing I was trying to get at is that it seems to
me that you don’t want PHR definitions independent of EHR definitions but I
don’t see that specified —

DR. DEERING: I think you want to be able to be map to them, you want to be
able to map between them.

MR. HUNGATE: So I don’t see that we’ve, we’ve done something here that
definitionally means that it’s going to work —

DR. DEERING: Actually I think that’s a good point, it sounds like it could
be handled possibly by a common, identify essential datasets for PHR systems,
comma, and to ensure that these datasets are mapped to data terms and concepts
used for electronic health records.

MR. HUNGATE: And you’d rather not create another language where the same
word means two different —

DR. STEINDEL: I think the thought is right.

DR. DEERING: Yes, yes, sometimes you do want another word because you want
the patient to be able to go in and say I’ve got an earache and then you want
the doctor to be able to say, my child has an earache and the doc wants to say
oh your child has otitis media. I thought that was sort of what he was getting
at, is that they’re consistent behind —

MR. HUNGATE: No, I don’t want, in the racial and ethnic profiling they
talked about the definition of Cajun being different in New Orleans then in
Alberta, that the word Cajun meant different things. And so it seems to me that
we want the same word to mean the same thing in PHR and EHR. What you described
was a different word for the same condition. It seems to me that there’s some
tracking there that’s desirable —

DR. COHN: I think it’s going to be hard to, I may be wrong but I think
you’re getting into that issue of do people use language the same way that I
think is a hard one but that may not be where you’re going.

DR. DEERING: I’m now seeing that what I tried to add is already covered in
the recommendation above because it’s the mapping to consumer oriented terms —

DR. HUFF: What I understood is that he would like, I mean if I’m sending
hermatocrites(?) from an EHR to a PHR they shouldn’t be named different things

MR. HUNGATE: Shouldn’t be any difference, right.

DR. DEERING: How about and to ensure that PHR datasets are consistent with,
something just as vague as are consistent with any comparable EHR datasets?

DR. COHN: Or consistent with.

DR. STEINDEL: I’m leery of prescribing any consistency between the essential
datasets which we’ve heard people say that we need but they haven’t been able
to define what they are and the EHR —

MS. WILLIAMSON: I think he’s speaking to the data elements and not the
essential datasets —

DR. DEERING: — any PHR elements are consistent with those in, that any
elements within that set are consistent with —

DR. STEINDEL: We may choose essential elements for a PHR dataset that aren’t
in the EHR —

MR. HUNGATE: That’s fine, that’s fine, but if there is one there then the
definition should be the same.

DR. STEINDEL: And we covered that I think in the recommendation above.

DR. DEERING: The mapping?

DR. STEINDEL: They’re either the same or they’re mapped.

MR. HUNGATE: Okay, if you feel that covers that then that would, it doesn’t
use the terms EHR —

DR. DEERING: I guess I would push back to Steve and the standards people
too, are we absolutely sure that we are sending the message here that this work
has to be done in parallel, it has to be consistent, it has to be, have we said
everything that we really need to say for that to happen?

DR. STEINDEL: No, we haven’t said anything about the consistency in these
statements with regard to the EHR except for the fact that we’ve defined this
whole thing under the section called interoperability —

DR. COHN: We need to have an obvious recommendation that says that PHR, HHS
must ensure that PHR standards are developed in tandem with EHR standards to
ensure transportability, interoperability —

MR. HUNGATE: An obvious recommendation.

DR. COHN: It’s so obvious we missed it.

DR. DEERING: PHR standards are developed in tandem —

DR. HUFF: I think you can say it easier and just say what we want these data
elements to be developed using standard code sets and terms that are used in
the EHR —

MR. HUNGATE: Wherever possible.

DR. HUFF: Well, we want them to be standard whether they’re used in the EHR
or not —

DR. DEERING: Using standard code sets and terms wherever possible.

[Multiple speakers.]

DR. COHN: Well, we need to remember to state the obvious —

DR. HUFF: I mean if we’re going to state it then again, it’s not really EHR
standards, what we would say is we would hope this standards adhere to CHI

DR. COHN: That’s true, we could say something along those lines.

DR. HUFF: Say something about should be defined according to standards
adopted by HHS, other data element vocabulary standards adopted by HHS.

DR. DEERING: Right now it says HHS should encourage standards development
organizations to identify essential datasets for PHR systems, using standard
datasets, data elements, and terms wherever possible.

DR. COHN: But that’s, datasets are not really the issue —

DR. DEERING: Take out standard data elements —

DR. COHN: No, this is basically just a general comment that, I mean I’m
trying to think, this is beyond datasets —

DR. DEERING: Remember, this recommendation is only about identifying the
essential, the verb here is to identify not standardize —

DR. HUFF: I mean we’re making two different statements, one statement is,
and what you’re really talking about here is actually not, I would have said
it’s not standards organizations, typically right now it’s professional
organizations, I mean the pediatricians are getting together, the OB-GYNs are
getting together, those are the people who are saying what data elements should
be in these core sets. And then there’s a second statement that says the
datasets you define ought to be defined using the core standards that have been
adopted so that this is not a new terminology, this is selecting SNOMED and
LOINC codes that define the data elements that you’re going to have be part of
these core sets.

DR. COHN: That’s the recommendation we need, not the, you’ve hit on —

DR. DEERING: Can you repeat that please?

DR. COHN: And I think that really supplants this recommendation —

DR. HUFF: So what I said is should encourage professional organizations to
identify essential datasets. These datasets should be created using standard —

DR. COHN: And I guess for the PHR I’m a little less certain who’s doing the
development of the datasets, we say any datasets developed for a PHR system, I
mean we’re sort of missing things here, we’re missing sort of the basics, which
is that any datasets developed to utilize your PHR systems must use basic
standards —

[Multiple speakers.]

MS. WILLIAMSON: Are you saying that HHS should ensure that that happens?

DR. COHN: I don’t know how you do that —

DR. HUFF: I think they can ensure, because HHS doesn’t actually have any
direct control of HL7 or X12 —

DR. BAUR: So I mean what is the agency role then in making what you
described happen?

DR. HUFF: To encourage.

MR. HUNGATE: There’s a system need which if I’m using the terms right says
that professional organizations have to assume the functions of standard
development organizations if they do not use accepted standards, that is if you
use the materials that’s already accepted and you’re within the bounds of a
standard system, if you’re not then you’ve got to develop a standard.

DR. COHN: It seems like we’re talking about three or four different things
here, it’s one of the reasons why I try to get away from datasets as much as
possible because I think the development of datasets, minimum datasets,
potential datasets, core datasets, you name it datasets —

DR. HUFF: There’s a reason why it has a bad name.

DR. COHN: It’s basically a, it’s different from creating because everybody
is using the same building blocks, and I’m mostly concerned about the building
blocks —

DR. DEERING: If I only may say so we heard from people as diverse as Andy
Leventhal(?) and the man who’s the head, the CEO of the Henry Ford Health
System as a well as a variety of others. They asked for an essential dataset,
so it’s a true statement which we have in there, we heard speakers from a
variety of situations say we really need this, we think it’s essential. So I
think it has to be a conscious decision for us to decide whether or not we want
to address it or not.

DR. BICKFORD: Carol Bickford, American Nurses Association. You’ve identified
that the professional organizations would be the owners of this initiative but
they wouldn’t know what the health care consumer is going to use for the
terminology and these terminologies that health care consumers are talking
about like I have high blood would have a component in the EHR when you’re
talking about the symptoms presenting or the patient’s concern or whatever, so
does that, should that then be incorporated into some standards that we have
for the electronic health record where you’re actually allowing incorporation
of terms that the health care consumer might have some common definition about?
It’s a continuing sort of thing, we don’t have a mechanism currently to code
what the patients say they have because we’re limited to ICD-9 and CBT.

DR. STEINDEL: Actually that’s one of the questions that is ongoing right now
with the use of ICPC because the nature of ICPC is to better report what the
patient is actually saying so we do have a standard terminology that’s meant to
do that. It doesn’t go to things like high blood or I got the miseries but it
does go down to more specific patient level type comments and there’s specific
instructions in ICPC on how to record patient information as they’re giving it
to you.

But in comment to this I think Simon you’re very correct, we have two
thoughts that are going on here and one is I think we have to include the
statement about doing essential datasets because that’s what we heard, we’ve
heard that repeatedly, that there needs to be some type of essential dataset
and we’ve removed the language of CCR and CDA but actually that’s the type of
thing that we’re talking about. There needs to be that type of equivalent
transfer mechanism created for PHR information, and there’s going to be
multiple of those depending on what type of PHR information we are

And then there’s the second concept that Bob introduced that we’ve been
struggling with that somewhere in here we have to make a statement that to
achieve interoperability with PHRs that the PHR standards need to have identity
with the EHR standards. They don’t necessarily need to be the same, they can be
mapped, but they cannot come from left field. And I think that should be, that
type of statement put in very simple specific language is the first
recommendation should appear.

DR. DEERING: HHS should ensure that PHR standards are developed to be
consistent with, or in harmony with EHR standards, period, consistent with, in
harmony with —

DR. STEINDEL: Consistent with other health information technology standards.

DR. COHN: Because actually what we’re trying to say is I think whenever
possible PHR standards should be based, PHRs should be based on EHR standards,
which I think is what we said earlier, we need some new standards for some of
these —

DR. DEERING: Based on EHR standards, period. HHS should ensure or promote?

DR. COHN: They can’t ensure, I mean the only question would be in the ensure
part is that should be a contractual, the question is is CMS should ensure in
contractual negotiations related in pilots, use of its data, etc., to let X, Y,
and Z happen —

MR. HOUSTON: I may be saying something, you don’t want to open up this can
of worms but should part of the recommendation also be that HHS encourages
standards organizations to evolve their standards as appropriate to address PHR
requirements? Existing, I mean have existing standards adapted over time to
include PHR concepts?

DR. COHN: Yeah, I’m sort of looking for, I absolutely, I agree with what
you’re saying, I’m just trying to think of how that plays in with the, where we
say —

DR. STEINDEL: I’m totally supportive of that but it’s kind of a
non-statement because standards have to evolve, every standard evolves, it
changes, it’s not static, and just putting a statement in there that says it
has to evolve is —

MR. HOUSTON: I agree they evolve but even though we took the sentence out of
this letter, the concept of the fact that PHRs are sort of the least
recognized, whatever, of the components —

DR. COHN: So what is it that we want to say? I think we’re all sort of
feeling —

DR. DEERING: Right now, just to remind us where we are, we are keeping a
simple statement about encouraging SDOs to identify essential datasets for PHR
systems, period. We have something that I still need desperately to wordsmith
but it’s going to say something like HHS should promote PHR standards be
developed based on EHR standards and should require such use of such common
synergy and it’s own activities or contractual activities, something like that,
so that’s a second stand alone one. And then what I haven’t quite heard is what
we want to do with this third that’s just emerged.

DR. COHN: Which is we encourage standards —

MR. HOUSTON: Organizations to consider PHR requirements as they evolve
standards or as they enhance standards, something like that. I understand
Steve’s point, some of this stuff is on the radar screen or off the radar
screen for these organizations, I don’t know —

DR. STEINDEL: And an SDO may not be interested in the PHR standards, I mean
we’re kind of saying that they have to be.

MR. HOUSTON: But if they’re not this is a general nudge to get them there.

DR. STEINDEL: They still may not want to be there, they may leave it for
someone else.

DR. DEERING: I’ll see what I can do with it, but something like encourage
those SDO organizations that are working on EHR standards to consider —

DR. COHN: Let me just ask about this last recommendation, it says the
federal government should provide incentives for PHR vendors and health care
organizations to adopt data exchange standards as a way of improving the
interoperability of the system, I mean that one doesn’t, provide incentives —

MR. HOUSTON: That whole incentive issue again.

DR. DEERING: Encourage PHR vendors?

MR. HOUSTON: But let me ask you this, I mean I guess the question, I guess
the first recommendation, or the second recommendation talks about SDOs being
encouraged to develop essential datasets and the recommendation we just talked
about was for these SDOs to develop, include PHR standards within their, or PHR
concepts within their standards. The question then here is isn’t that enough
rather then the third recommendation? If you make them they will —

DR. DEERING: I think the other is about the adoption and implementation and
I think, if I’m hearing you say that we don’t need that last recommendation I
think the reason it’s in there is as anybody in standards, as Steve always
keeps reminding us, it’s one thing to make the standards but it’s the adoption
and dissemination —

MR. HOUSTON: You’re correct, and then the flip side of this would be unless
we had the recommendation I proposed last, this last recommendation here on the
list really wouldn’t work because you couldn’t adopt a standard if it didn’t
meet your need, so you do both need to have the standards consider PHR
requirements as well as then the PHRs then utilize the standards that are being
adopted then.

DR. BAUR: And I actually see a couple of other problems, first of all I’m
not entirely clear what the relationship between the federal government and PHR
vendors would be, I think that’s pretty tenuous there. So the extent to which
any incentives that the federal government could come up with might be
influential to PHR vendors I think is an issue. And I think the second point
goes to what you were saying maybe about the previous recommendation, that it’s
really about anything, any activity that HHS or the federal government broadly,
so that you include OPM and other places like DOD and VA, it’s whatever they do
vis-à-vis PHRs themselves that’s the consistency of their choices
vis-à-vis interoperability and standards and those things which then end
up influencing the market because those decisions are so important. And I think
that’s actually something we have a lot more control over then sort of these
more broadly things about encouraging and promoting.

DR. COHN: And it mirrors our privacy recommendation.

DR. DEERING: But the way that we can fix it is again, we started out today
with one recommendation that says we encourage the industry to, I mean before
we walked in, we haven’t gotten to it because I don’t even know where it is
yet, I think it’s in the privacy section. Somewhere in my notes I remember
myself saying gee, I’ve heard another recommendation or suggestion that
actually targets industry. We could take this last recommendation, instead of
saying the federal government should encourage the vendors and health care
organizations do this we could just say NCVHS encourages vendors and health
care organizations to utilize —

MR. HOUSTON: It would have a little bit more weight of —

DR. COHN: Well I think that these are all the privacy recommendations
actually, the ones you’re talking about, I may be wrong about that.

DR. DEERING: I guess the point is hearing some concern about whether any
reference to encouraging vendors and health care organizations is appropriate
in this section, that’s what I’m hearing right now is the desire to almost take
it out because HHS can’t do anything —

DR. COHN: And certainly we’re taking off incentives —

MR. HUNGATE: Just change it from incentives to encourage.

DR. DEERING: I understand that, but I thought I heard a push back that gee,
maybe the federal government doesn’t have a role even to encourage —

MR. HOUSTON: Well, the federal government versus HHS, the prior
recommendation was HHS should encourage, then the federal government should
provide incentives —

DR. DEERING: We’ve taken out all incentives.

MR. HOUSTON: No, no, no, no, my point was though in one case you use federal
government broadly and in the next you use HHS in terms of —

MR. HUNGATE: Probably should be HHS again.

MR. HOUSTON: I’m just saying should it be HHS to be consistent when we start
by saying encourage, that’s all I’m saying.

DR. COHN: And I don’t mean to be a little short but I think we’ve all been
here like long enough at this point. Obviously Mary Jo without us going into
this in depth I would look very hard at the privacy recommendations, not all of
them but there’s one that talks about voluntary, privacy and voluntary adopt,
that’s one recommendation. Another recommendation is for all HHS sponsored
projects, for contractual negotiations. I think there’s also another one here
or should be another one, I thought there was on actually here about —

DR. DEERING: It just says for any response or pilot projects and any
contractual relationship with CMS —

DR. STEINDEL: And Simon if we mirror that type of language in this section
that eliminates the need for the ONCHIT research recommendation that we were
having problems with.

MR. HUNGATE: I was thinking it didn’t eliminate it, I was thinking it was
still a necessary content.

DR. STEINDEL: I don’t think so.

DR. COHN: So you think if we’re doing that then we don’t need to —

DR. STEINDEL: I don’t think we need to run into the area of prescribing what
ONCHIT should be putting on the NHIN for PHRs, I think by saying that if HHS is
going to contract for this stuff and this stuff is going to come off the NHIN
and we say it’s got to conform to standards, interoperability standards, we
would meet the same objective.

DR. DEERING: I’m not sure I agree but I’ll take a look at it. Because
they’re getting so much attention, ONCHIT and NHIN are getting so much
attention, that’s where the money is going, that’s where everybody is paying
attention to, they’re not paying attention right now to the standards
development organizations. And so I think that you’ve lost the impact, and that
may be a choice that we make but I don’t think it accomplishes the same

DR. STEINDEL: Choice that we should make.

DR. COHN: Okay, this was supposed to be easy, this was not easy. It is 5:51,
the meeting is adjourned until 8:30 a.m. tomorrow morning.

[Whereupon at 5:51 p.m. the meeting was adjourned.]