American Health Information Community

Consumer Empowerment Workgroup Meeting

May 1, 2006

1 p.m. EDT

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\>\> Operator: Mr. McCoy, we\'re ready to begin.

\>\> Matt: Thanks. Dan and Linda, would you like to begin the meeting?

\>\> Dan: Yes. Please. Thank you all for coming today and joining us for
another meeting of the Consumer Empowerment Workgroup. I\'d like to call
the meeting to order, and on behalf of Linda Springer, and I\'m sure
with Gail\'s approval, Nancy Davenport-Ennis, and thank you all for
joining us. We\'ve got just an hour today, and we want to hard-charge to
get our paper in format for a presentation at the next AHIC meeting. So
appreciate all of your efforts to focus in on that today.

If we could have the roll call, please.

\>\> Matt: Sure. Kelly, would you like to introduce members on the phone
or in the room with you and I\'ll read off who are calling in.

\>\> Kelly: Yeah. Linda Fischetti \-- Linda is here for Rob. Robert
Tennant from MGMA, and Jodi Daniel.

\>\> Matt: Okay, and joining on the phone, we have Myrl Weinberg; Joe
Martinez, who is filling in for Davette Murray today; Anders Gilberg;
Lorraine Doo; Charlie Safran; Martin Ross; David Lansky; Lynn Rosenthal.
Is there anyone else I\'ve left off who has called in?

\>\> Kelly: Justine Handelman just called in.

\>\> Matt: And Justine Handelman. That looks like it.

\>\> Dan: Thank you very much.

First on the agenda we\'ve asked Dr. Brailer to speak to us, and provide
his insights and on the draft report that we have before us. Dr.
Brailer?

\>\> David: Thanks very much, Dan. I appreciate it. And let me thank all
of you, the Workgroup members and those in the broader public who I know
have participated in nearly every discussion. This group really has made
remarkable progress. And we went through with diligent review last week
with all the workgroups to understand where we are to make sure this
meeting on May 16 of the American Health Information Community is
prepared to get the maximum kind of impact through the recommendations
we\'re going to go forward with.

I do have a few thoughts I\'d like to share with this Workgroup in
particular about where it is in its work. Particularly focusing efforts
on the final target over the next few days. And again I want to thank
everyone for very hard work. And I promise you that we\'re prepared and
poised to do something very important with the work that comes out of
this group.

Let me back up. The meeting of the American Health Information Community
is on May 16. At that meeting we had planned to hear recommendations on
the enabling changes that the government and other parties need to make
to allow the short-term specific charges, the short-term breakthroughs,
in your case medication history and registration summary, to go forward
with other Workgroups as you know with lab results, efforts.

We will have a period of a week\'s review by the American Health
Information Community members, also a posting on our public Web site for
comments, of your draft letters and other information. Which brings us
back to approximately May the 8th or 9th, depending upon the actual ship
date. So really within a week of having your final work together. And I
know this has been a gargantuan effort to go from the top of the funnel
to things getting to be quite specific.

During the next week we want to encourage you as much as possible to be
able to formulate recommendations that have specificity for the
short-term breakthrough for the specific charge. You\'ve done work that
goes far beyond any other Workgroup in terms of providing
recommendations for the broader charge. With a broader initiatives. And
we\'re going to be bringing those forward as formal recommendations in
June. But we want to make sure that anything that you can think of in
any of those categories that are relevant to the short-term breakthrough
is brought forward this week so we can bring them to the Federal
agencies when we begin in earnest having these charges worked through in
to Federal actions.

To give you a sense of time line, if the recommendations involve a
regulatory change, a guideline change or something that the Federal
Government has to use its regulatory authority to influence, the lead
time on that is several months, up to 6 months. And so May is really,
and perhaps June, are our last opportunities to have the big issues
under way. We\'ll have a chance later in the year for any tune-up
actions, and clearly you shouldn\'t target your effort only at the
Federal Government. There are a lot of players that need to act, but
this meeting is critical for those. You have two recommendations brewing
that we think are relevant to the May 16 deadline. One is a
recommendation about setting the data standards, if you will, asking
HITSP to do their effort with respect to your breakthrough and I know
that\'s started with them but that is a formalized recommendation we
would like the American Health Information Community to discuss and to
endorse.

And secondly, I know you\'re still working on this question of how to
form a cross-cutting group that can discuss privacy security
identification-type issues. I think your Workgroups have found
commonalty across at least the topics if not the particular issues.

So it\'s our thinking that your thinking is correct, which is that this
group is probably the best candidate to be able to host those
cross-cutting discussions, would be able to bring forward
recommendations. Clearly can\'t do that by May 16, but I think you
should recommend that you convene a subgroup of your Workgroup to be
able to do that work and to identify a subgroup chair that could have
members from the other Workgroups and perhaps others participate, be
able to formulate these activities.

So those are two that we know of, and there could be others. And again,
I know you\'ll have an enormous amount of longer-term breakthrough
recommendations ready for our June discussion, and we\'d like to have
those presented in a very summary way on May 16 \-- we're not asking
AHIC to act on broader questions at this meeting.

If you have big issues where you\'re not able to come to agreement about
major assumptions, to bring those different views forward to let the
American Health Information Community give you guidance about their
thinking, how to refine your charge or how to help you identify ways of
either narrowing the conflict or to resolve it so you can move forward
more quickly. I say this knowing you\'ve done incredibly good work and
we\'re eager to get as much forward to the Workgroup as we can. With
that, let me say thanks and if there are any questions about what I\'ve
just said and how that translates into your work, I\'d be happy to
answer them; otherwise I\'m looking forward to listening and
participating in the discussion.

\>\> Gail: David?

\>\> David: Yes.

\>\> Gail: Hi, this is Gail. How are you?

\>\> David: Good, Gail. How are you doing?

\>\> Gail: I\'m fine. I just want to make sure that I understand that in
our draft letter, through the Secretary, then, this letter would go
forward with Recommendation 1.0 and then also a broader recommendation
on the cross-cutting \-- or recommending another to convene another
subgroup so we could pull together the cross-cutting policies, right?

\>\> David: That\'s right, Gail. And again, you can transmit any of your
other recommendations in that letter on an FYI basis to the community,
but just from a logistics scheduling perspective; we don\'t have time
scheduled for them to work through all of those issues at this meeting.
So I think you want to make sure that your priorities of having the
short-term things adopted and approved are right there as what you\'re
asking them to do. And the other ones can either be included in your
presentation or in the letter, or in some other format, so they can
begin mulling over them. I hope you\'ll at least go over some of the big
issues.

\>\> Gail: So really the letter should say "short-term," "immediate,"
and then "long-term"?

\>\> David: Remember, your letter becomes the basis by which the AHIC
itself will transmit a letter to the department.

\>\> Gail: Right.

\>\> David: Well, you\'re writing the letter from the AHIC and if
that\'s adopted that will be a formal fact of recommendation. But there
are a lot of other things you want to report on. These fault line issues
or where you\'re headed in terms of the big, what we would call evolving
issues. Which you\'re already further ahead on. So yes, I do see your
letter really having at this point two specific recommendations, with
respect to the short-term breakthroughs.

\>\> Gail: Okay, all right. Thank you.

\>\> Myrl: This is Myrl, and I guess I want to ask a little more. To me,
the second one, David, is our Recommendation 2.0 which talks about this
subgroup that uses representatives from other groups. And if I heard you
correctly, you\'re saying we might make that a little bit more specific
and suggest that our group be the host of such a subgroup. And so if
those are up front in the letter, is it still \-- would you see the
other recommendation being still listed the way they are with that
explanatory material, but just as longer-term recommendations that
we\'re considering?

\>\> David: Myrl, I think your question is right. The degree to which
you can bring specificity on forming the subgroup, which would be that
it is in your group, that it meet over a certain period of time that it
be given a deadline for reporting out. That it includes representatives
from the other Workgroups. I think those kinds of elements would give
specificity and accountability to this. And I think that\'s what you
should do.

And you should also list the kind of charge it should have. You know,
what topics. Again, you\'ve got all the pieces there. I would not try,
in your own right to bite them off and make substantive recommendations.

But in terms of other recommendations, I think those can be best
transmitted outside this letter, in the PowerPoint that tells the group
where you\'re going, because this letter should really be self-contained
to say here is what we are recommending you do and there is standing in
statute in terms of this recommendation. And so we\'re just not asking
for action from the AHIC on this. And the reason we\'re doing that, just
because I don\'t want you to feel like your very hard work is not being
appreciated. It is. You\'re just further ahead than every other
Workgroup in the broader charge. And we\'re trying to be very specific
with the agencies that the work up front that we want them to do in May,
and in June, before you get together for your next AHIC meeting, is to
act on the short-term breakthroughs, and we don\'t want to mess the
dialogue up very much with short-term and longer-term things so we can
have real accountability on this.

\>\> Myrl: That helps a lot. That really clarifies for me what would be
desirable in the first communication.

\>\> David: And then \-- but then the point here which I think is quite
different from the others, Myrl, is when you get ready for the next
letter, you\'re already ready. You might have more work to do but
you\'re way down the pathway. I want to make sure we have the sequence
right here. And this week, if you do find things that can drop out of
any of the broader recommendations that are quite specific to medication
history, do it. But if it turns out \-- and I know I\'ve talked to you
offline, it\'s hard to tease out things about medication history or
registration that simply are not basically part and parcel with the
overall recommendation. Which is quite different than other workgroups,
then don\'t feel a need to do that. You can come back to that at the
June meeting.

\>\> Myrl: Okay, thank you.

\>\> Dan: This is Dan Greene. I think there may be one or two other
recommendations that meet your qualifications, Dr. Brailer. Specifically
I\'m talking about Recommendation 1.5, which recommends that CMS, and
AHRQ \-- the chronic disease area as the primary choice for starting to
value the electronic registration summary and medication history. It has
a 12/30/07 date for an evaluation to get back to AHIC and that time line
might be able to be moved up. But I think that is a specific sort of
recommendation that can \-- that can get acted on now in the short term.

\>\> David: That\'s great, Dan. I\'m not trying to prejudge any of the
specific pieces. I do hope that you can think about directing the
agencies to have that first look done earlier with maybe a follow-on
action by the 7th \-- or by the \-- by that date, in 2007.

\>\> Dan: All right.

\>\> David: But for sure that \-- with exception of that date, I think
that clearly meets the short-term test.

\>\> Dan: Before we move on to any others, are there any other comments,
questions, thoughts about the first two recommendations Dr. Brailer
raised and possibly the third that I just raised? Or by the formatting
of the letter itself?

\>\> Myrl: Well, this is Myrl again, and I do think the second
recommendation we can make it more specific. In order \-- you know, the
way that we talked about already, which is to say that we\'re
recommending that the subgroup be pulled together from members of the
other groups, and we\'ll have to decide if potentially there might be
outside expertise needed specifically on the privacy and confidentiality
that it convened under our group and potentially there be a Chair
identified.

\>\> Dan: Is there general consensus that among the Consumer Workgroup
members that \-- a willingness and acceptance of having the privacy
issues retained within our Workgroup?

\>\> David: This is David. I think that was actually \-- the original
draft of this had a little bit more specificity along the lines that
Myrl has just said.

\>\> Dan: I think you\'re right.

\>\> David: Earlier language, it may help us to get to a final on this
one.

\>\> Dan: Good. That would be helpful. Any other thoughts?

\>\> Ross: Dr. Brailer, this is Ross Martin. I do have a question about
the other recommendations and how we\'ll deal with those. I understand
it makes a lot of sense to me that we would focus on the ones that are
very short term. Are we going to \-- is there a place to offer a draft
of the current state saying \-- have an appendix, just saying we welcome
additional input, this is as of the date of this letter, thinking on
these other issues before \-- we do have specific recommendations about
these, we\'d welcome input as we work on this process? Or that something
\-- it seems like we want to inform them about where we are at the
moment so they can have a chance to influence it before it comes back
before them June or later.

\>\> David: Ross, I think it\'s a good point. I think there are three
levels that I would encourage here. First and foremost is in the form of
a letter and in the oral presentation from the chair is with the
PowerPoint, to identify the recommendations the Workgroup transmits to
AHIC and asking for consensus action by the AHIC to transmit to the
department or the other parties.

And those we need to be focused on the short-term actions.

Two, those things where you\'re seeking guidance. Things where there are
short-term actions and you couldn\'t resolve, which is happening in some
workgroups, I don\'t think here. Things where you have bigger broader
conceptual issues, where there are fault lines or fissures and you need
unified leadership abroad.

Or some of the recommendations for June. You can glean guidance from
them.

And third is a status report on where you are with everything else. All
the things you\'re working on. I would really carve out that middle
group to have them identify \-- you know, identify things for them that
you really do want their input on. Knowing the personality, they\'re
going to give you input wherever they think appropriate, but you all as
a Workgroup, I think, should selfishly look for input in areas where you
do think you need that help.

\>\> Ross: Okay.

\>\> David: And those are in the form of the PowerPoint presentation.

\>\> Ross: Okay.

\>\> David: I think that\'s the place for it. And that\'s what we
envision, when we spoke of the evolving recommendations. You have gone
beyond evolving; you have pre-final long-term recommendations, but I
still think that spirit of having and know where to look and give you
some discussion and I think about this purely from agenda management
knowing we\'re going to go through a mountain of issues on the 16th and
we want to have time for them to focus on the important things for you.

\>\> Rob; I\'d like to make a comment on Recommendation 2.0; it\'s Rob
Tennant with MGMA. If you look at the set of bullet points that follows
the wording, it seems to me that we can probably pare that down. I think
several of these don\'t belong there and we\'re omitting one important
one. One that I would add to the task that the ad hoc Workgroup would
have would be identification of State policies impacting juveniles.
We\'re going to take on pediatrics as a test case, I think we have to
know how State law will impact PHRs. And probably be one of the policies
for parent/guardian unification and consent, but I think there\'s a
couple we can probably remove. The third bullet, "Requirements for Data
Management and Consolidation, Standards for Patient Source Data" \--
both of those really don\'t intersect the data, or they intersect with
other areas outside of strictly privacy, and then the third-last bullet,
"Policies for Breaches of Private Health Information," well, clearly we
already have Federal regulations impacting that. Unless we\'re going
through the reviewing HIPAA and the applicability PHRs.

\>\> Gail: Hi, this is Gail. I think that if we\'re going to move on a
recommendation that an ad hoc committee be created to look at these, I
don\'t think that we should get too specific today on \-- because I
think that is what the committee would do.

\>\> Myrl: This is Myrl, I think anything that we can give them to give
them a jump start, because we have talked about this and thought about
it. As long as we don\'t tie their hands, we can say it\'s our
recommendation to the group that we\'re going to oversee that we look at
these kinds of things. And then as the group meets, they can be
modified. But I think the more specific we can be since we\'ve had
discussion, the more helpful it would be so they don\'t flounder around
and kind of rehash the same thing.

\>\> Gail: Well, I think that\'s fine, Myrl, and I think you\'re right.
I just don\'t want to see us be too specific to the point that people
aren\'t going to look at anything else.

\>\> Myrl: Well, I agree with that, absolutely.

\>\> Kelly: This is Kelly Cronin. If it would be helpful, we have tried
to internally, across the full working group, tried to figure out what
the conversation has been around these \-- around the privacy and
security issues and tried to categorize all of the discussions and the
issues that had come up in a way \-- I think that\'s somewhat similar to
the bullet points but might use slightly different terms. If it would be
helpful, we could prepare a different way of categorizing this where
we\'re not losing a lot of the important content or deliberation to
date, but that we\'re at least trying to capture also what some of the
other workgroups have been discussing.

\>\> Dan: This is Dan Greene. I think that would be helpful, Kelly. And
I think it involves both Recommendation 2.0 and 2.1.

\>\> Myrl: This is Myrl, and I guess I had marked 2.1 as something that
maybe we did need to think a little bit longer about and some of it
based on whatever the first group comes up with. So I guess I wasn\'t
\--

\>\> Dan: Okay, so you\'re suggesting that that be a follow-up based on
what the subgroup \--

\>\> Myrl: Yeah, but would be in the second that we\'re still asking for
guidance, thinking about.

\>\> Dan: Okay. Any thoughts on that from others?

\>\> Ross: One of the things I\'m looking \-- as I\'m looking at
Recommendation 2.0 \-- this is Ross \-- that I don\'t see specifically
is that the recommendations are all for the short \-- it does say it\'s
defined policy cap, finite cap, predetermined schedule but it doesn\'t
say for enabling the short-term scope of the breakthroughs. It doesn\'t
address the breakthrough specifically and that can be sort of
overarching task of the group, and then we can still give
recommendations about what we\'ve observed are things this group would
have to address for enabling those short-term things. And then just to
the last point about Recommendation 2.1, the final bullet about cracking
the scope of work for an independent advisory body that I still think
would be a beneficial task of this group that\'s \-- that is clearly
outside of the scope of anyone\'s breakthroughs, but would still be one
to highlight. One thing we can\'t \-- form this long-term group, but we
want to make sure it gets shaped as one of your last tasks. After
you\'ve done the breakthroughs, then build out the recommendation for
the advisory body.

\>\> David: This is David. I guess in the same spirit. I don\'t know
what language we might use in 2.0 to acknowledge that some of these
problems are much bigger than can be addressed in a short-term ad hoc
group. The issue authenticating individual consumer users is a major
national commitment of the government and a lot of private sector
players, we probably won\'t solve it in time for this Workgroup, and
I\'m wondering if there\'s a way we can say in here that the short-term
solution for some of these challenges may be partial, not even terribly
desirable, but they\'re workable for the short-term breakthrough, and
they may be transitional toward whatever more robust solutions come out
of the longer-term 2.1 approach. So I want to caveat whatever comes out
of this group and not give it the imprimatur of fixed national policy,
given the way it\'s probably going to have to go about its work.

\>\> Ross: That\'s what I meant to say.

\>\> Dan: Yeah, we need \-- I agree, we need to capture that. Any other
thoughts on 2.0? Do we have consensus that that can be one of the
immediate recommendations?

\>\> Gail: We\'re going to put in there that we\'re recommending that it
be \-- or that we host that group?

\>\> Dan: That we host and convene a subgroup made up of members \--
appropriate members identified not only from this Workgroup, but from
the other workgroups, and any other identified source that would look
specifically at these issues and over the, I don\'t know, short-term
period, and get back to the Workgroup to prepare recommendations to the
Secretary. For AHIC and the Secretary.

\>\> David: Focus on the breakthroughs.

\>\> Dan: Focused on the breakthroughs. Right.

\>\> Kelly: This is Kelly again. It would be helpful if we could
determine a reasonable date to get back to the community again. Whether
it\'s September, October, or whatever time frame we think is reasonable,
I think that we need to sort of set the expectation, and then plan a lot
of our public meetings around that.

\>\> David (Lansky): Kelly or David, can you give us a feeling for given
all of the workgroups, when it will be realistic for them to be
supporting or encouraging implementation of these breakthroughs, and
therefore these policies would need to be available to them for that
real-world phase?

\>\> David (Brailer) : I think the subject matter here, David, varies by
workgroup. And to some degree the short-term breakthroughs that we have
people focused on were designed obviously as a probe to determine how
far we could go with some solution oriented thinking given the fixed
landscape of current policies and current other activities. So it\'s my
hope that we have a few months, David, to play this out. Say, maybe, May
or early June, through September, October, maybe 3-, 4-, 5-month window.
I\'d hate to say beyond November, December, because we\'re really
thinking once we get through the short-term round, we\'ll be dropping
aggressive recommendations for longer-term issues, the real meat, and
this has to be a precursor, I think. So ideally these would drop before
lots of other workgroups drops recommendations so they can have \-- can
we do 90- or 120-day window. Does that give time for this to happen?

\>\> Dan: I suggest that we ask them to report on those that are \--
that we use 90 or 120 days, and any that are \-- and to identify any
that won\'t resolve but need to be addressed.

\>\> David: I guess I should just say in the background that we have
been pushing you all to the wall to really get from ground zero here to
the \-- and up into the real detailed issues, but we recognize that
after the May 16 meeting of these short-term breakthroughs, that we then
have some time to let the real substance of these topics play out. So
it\'s not that we\'re going to back off and we\'re not going to be \--
we\'re going to be as pushy, but I think we are going to recognize the
agenda is going to have more time for real substance in it to deal with,
and you all have really got there because of your focus on this work,
but others I think have been very much slaves to the short-term process.

\>\> Dan: Shall we say 9/30 that\'s for \--

\>\> Rob: That would work for our needs, Dan.

\>\> Charlie: This is Charlie. I don\'t see that any longer time is
going to yield any more insight, just the availability of people during
the summer months, and since it\'s by phone, a lot of it, that
shouldn\'t be a problem either.

\>\> Dan: Any other thoughts on 2.0?

\>\> Ross: I have a question regarding the dissolution of the group, or
when we disband it, rather I assume we would disband this ad hoc group
when a longer-term \-- a permanent, quote, group, would be formed. Will
there be a role if that group does not form right away, for there to be
a place for the breakthrough execution arms \-- let\'s say there are
proposals that go out to implement these breakthroughs in a private
setting or in a small setting, and (inaudible) work out their policies,
security, privacy issues, specific to those \-- specific to those
implementations that are \-- that one of the objectives being that all
of the decision that is come out of there, are kind trying to look at
that bigger picture in that short-term. We\'re not in conflict with our
policy about privacy from one breakthrough implementation to another. Is
that also a role of this group in the short term until that long-term
body is formed?

\>\> Dan: I\'m not sure I follow the question totally. I do know that we
don\'t have \-- this Workgroup does not have a leadership responsibility
or an implementation responsibility. Or even an oversight
responsibility.

\>\> Ross: There will, however, be a need for someone to take a look at
all \-- what is happening in terms of the implementation. Let\'s say
again there are contracts that go out, or specific projects that are
designated as these are ones that are in response to these
breakthroughs, and they\'re going on, and as they build them up, as they
make decisions, there will be a need to vet the policies related to that
that we would hope would have consistency across all of the
breakthroughs.

\>\> Dan: I would assume that any \-- that if it was deemed necessary
for that to happen, and the Secretary found it useful for that review to
go forward in the Workgroup, we\'d be charged with that.

\>\> David: I would just comment, I guess, again, I don\'t want to
dominate your discussion, but this specific factual question, the
opposite of a national coordinator really is positioned as the agent for
the government to ensure that there is coherence across the long-term
solutions. That\'s a standing constraint we have recognized. If you
remember the kind of polarized graph that I showed of short term versus
long term with the governing mechanisms in the middle that do include
the AHIC, we see ourselves making sure that we just don\'t have
breakthrough based on one-ups. And by that token, the Interagency Policy
Council, Federal health architecture, the way we oversee the contracts,
are going to be part of ensuring that happens. But also, we do expect
the AHIC to visit the topics of where we are with those infrastructure
projects from time to time and raise these issues, and it\'s our hope
after we get out of the box here and get some of the basic
recommendations, that the workgroups will meet, perhaps, with some of
the contractors to have specific dialogues along the way. This is a key
issue that really is raised by the nature of a breakthrough-based
strategy. That there has to be coherence. But there\'s essentially a
paid staff that there\'s to ensure that as one of several key outcomes.

\>\> Ross: Then in that light, do we need to make part of our
recommendation that acknowledgment that ONC plays that ongoing role of
advising the breakthrough implementations about these policy issues?

\>\> David: You could, but it's \-- from a \[overlapped\] perspective,
it's already the policy of the government so you don\'t have to do that.

\>\> Ross: Okay, great.

\>\> Dan: Are we ready to \-- can I declare a consensus on where we\'re
headed on Recommendation 2.0 subject to final cut edit? All right then.

We skipped over to some degree Recommendation 1.0. Is there any thought
about any changes needed to that recommendation to make it more short
term and immediate? Or can it stand as is? Thoughts?

Hearing no comment, can I assume consensus?

\>\> Lorraine: This is 1, Recommendation 1?

\>\> Dan: 1.0, yes.

\>\> Lorraine: Do we need to put a date, as we did for the other one?
Something that has a deadline? Something that shows support of a, you
know, something pilotable? To me, this is absolutely critical to
everything in our original charge, and it certainly \-- I don\'t think
it should drag out any longer than the date we just put on another one,
and I don\'t know if it can happen any faster, but we could have
consistent dates, but some kind of deadline.

\>\> Kelly: Ross, could you comment on where HITSP is now and process
and what we might be able to include in terms of a date for them to
report to the Workgroup on their progress in the Community?

\>\> Lorraine: And maybe you could talk about what\'s going \-- I
thought there was something due either May 8 or May 16?

\>\> Ross: I have to confess that relative to this process, that \-- my
involvement in the details of where they are has \-- slacked a bit. We
believe \-- we\'ve been so busy. Been monitoring it, but I couldn\'t
give you very explicit. I know they just got finished with their work
products, some analyses, but I couldn\'t explicitly say where they are
right in terms of deadlines. I think they\'re on track, is what I
understand. So whatever it is articulated in their contracts, I think
they\'re still on that.

\>\> Lorraine: Kelly? Is there someone else from \-- because I just had
to review them, is there someone else from that Workgroup in \--

\>\> Kat: I\'m not sure if you can hear me. This is Kat Mahan. I do have
e-mail from them on Friday that they\'re working to finalize their
standards gap and overlap analysis by May 29. From each technical group
they will report back in by that date, up to John (inaudible) and the
overall panel.

\>\> Jodi: And this is Jodi Daniel. Lorraine, my understanding is they
were doing the first cut where they\'re trying to get a set of
recommendations by May 8, which is probably what you\'re talking about.

\>\> Lorraine Right, because that\'s what I\'ve seen.

\>\> Kat: Yeah.

\>\> Lorraine: And we have those and we actually commented on them. Here
at CMS, we\'re trying to coordinate a number of other people to take a
look at them. Because it\'s a very comprehensive listing of all of the
standards for each level of functionality based on the use case. So one
really needs to have knowledge and understanding of what those different
standards do. We really needed some subject matter expertise to do
justice to it. And that\'s what we\'re looking for here. We were able to
at least make some general comments. I\'m glad to hear the May 29 date
sounds somewhat in line.

\>\> Kat: I think so, yeah.

\>\> Dan: There\'s some suggestion we could use that wouldn't embarrass
HITSP and still give them our suggested requirements so that they can
get to work on that? Make sure it\'s included in their activities?
Should we use deliberate speed or have a date?

\>\> Lorraine: Would you indicate in their contract there is in fact,
there are dates they have to meet?

\>\> John: This is John Loonsk. I was just down the hall and I was
moving to a place where I could talk and be heard. And the \-- HITSP has
some specific time frames for a variety of steps along this process. And
I didn\'t hear all of the previous discussion, so I'm sorry if it's a
little repetitive, but what is out right now is just the broad "Are
these \-- all these standards identified adequate to cover this area,
and then are there gaps?" And there will be two rounds of comments on
that. One of which we\'re in.

Then in June, there\'s going to be work and comments on specifically
identification of which standards to use in those particular areas. All
of that is in progress toward very specific implementation-level
guidance that would be detailed articulation of what the standards are
for those areas in the fall.

\>\> Dan: So it wouldn\'t necessarily be out of line to try to make this
dovetail with the other recommendation of September 30?

\>\> John: The specific guidance will be available, targeted to be
available in September.

\>\> Dan: Okay. So is it agreeable then, that we use a requested
completion date of September 30?

\>\> Kelly: I think that sounds good, Dan.

\>\> Dan: Okay. Any other suggestions, comments, or issues about this
recommendation? All right. If not, then I raised 1.5, I think it is \--
yes, it\'s 1.5, what we talked about the chronic disease patients as
being the population to concentrate on initially and then we also talked
at the last meeting about if possible specifically at the pediatric
population. It would have a 12/30/07 completion of evaluation period.
First of all, is there \-- is there any agreement or do others agree
that that might be a recommendation that should be reported out for the
May AHIC deadline?

\>\> Kelly: Dan, it sounds like based on David's comments, and I think
just \-- I don\'t know if Helen Burstyn's on the line, or maybe Lorraine
could speak to what might be realistic in the way of an interim date to
focus on what might be able to get done this year. For example, we may
want to say something around Federal agencies piloting a program to
demonstrate the value of electronic registration summary and medication
history in 2006, and then the evaluation would be done in 2007.

\>\> Dan: Yes, exactly. I personally think it\'s important to give this
guidance now, so that, you know, the work that we\'ve done to date will
be forwarded to these agencies to help them in determining which types
of programs to pilot-test.

\>\> Myrl: This is Myrl, and I certainly support some recommendation
that does encourage these important Federal agencies to move forward,
because the whole process does take so long. I guess my one concern is
this is so focused, and it is focused on our core sort of assignment,
but I feel like by the time they would be doing anything, we\'ll
probably hope they\'re looking at more than this. And I wish there was
some latitude to expand it because there\'s \-- excuse me, I\'m sorry.
There are comments in the letter, this draft letter, that do speak to
the fact that a lot of places and different entities beginning to
implement or look at electronic personal health record, they\'re
certainly not looking at them with this isolated narrow scope. They\'re
looking at them in a much broader way and I guess I feel uncomfortable
holding AHRQ and CMS to just these specific areas wherein reality I
think the systems that are out thereto are going to be much broader.

\>\> Lorraine: Part of the issue, and I guess it\'s always open to
discussion is where will in fact the real value come from these tools?
You know, right now they are pretty ubiquitous and there are a lot of
them throughout and it\'s very difficult to make choices. But where
ultimately where will the value come out, and who will they help the
most? And I think that\'s what we\'re trying to see. By focusing in a
population so we wouldn\'t \-- we wouldn\'t flatten ourselves out too
much. And we actually are able to tell if there was some impact. And I
\--because I seem to remember these discussions probably back at the
beginning. It\'s tough because there\'s value in doing it both ways.

\>\> Myrl: I would just asking maybe we could leave some sort of
latitude and discretion up to them. If we made great progress, by the
time they evaluate these, the sort of industry could be down the road
quite a way, which is really what we are hoping will happen.

\>\> Dan: Well, perhaps we could just fine-tune this just a little bit
that \-- so that we note that there\'s potential for a greater
contribution to the specific populations and that we certainly would
want \-- we would strongly recommend that those areas particularly be
subject to a rigorous evaluation, but that our overarching
recommendation is that these agencies demo and rigorously evaluate any
electronic registration, summaries and medication histories,
particularly maybe those that have to do with patients with chronic
disease and sick pediatric population.

Is that what you had in mind?

\>\> Myrl: You know, I would look to others to \-- I would not say \-- I
would say chronically ill, but I\'m not sure \-- I guess I wasn\'t
thinking this particular recommendation to them that we were saying the
pilot was any targeted population.

\>\> Lorraine: And for CMS, you know, you\'ve got sort of a \-- you
know, you have Medicare, which is a very broad spectrum, and then of
course Medicaid population which is also a broad spectrum. And so again,
in order to do a good job and to have valuable information to share, I
think you\'re probably right, what you\'re trying not to do is only put
your line in the sand and say this is all that we\'ll do, because if
something else came up, you want to be able to have the opportunity to
do that as well. I think is what you\'re trying to get to, Dan, right?

\>\> Dan: Yes.

\>\> Lorraine: It's just a little bit more flexibility. So there may be
a way to rewrite it that say we\'ll be focusing on these two. And give
us a \-- the option to do more should the opportunity present itself.
But then our prime population at the outset, if you will.

\>\> Dan: I mean, if the goal \-- if one of the primary things that
would be focused on is to show the value of PHRs to consumers. There\'s
likely to be more immediate value to frequent users of the health
system, frankly.

\>\> Lorraine: Exactly.

\>\> Kelly: Right, and just to let you know, Myrl, I don\'t know that
you were part of previous Workgroup meetings or subgroup meetings that
talk about it but we did reach consensus on focusing on the chronically
ill because they frequently utilize the system and it\'s an easy \-- or
it's \-- it would be possible for us to demonstrate value with people
that have to access both the registration summary and medication history
more frequently.

\>\> Myrl: And I am aware, and I\'m thrilled about that, actually. I was
reacting to saying that it had to be, you know, children or within that
population other subgroups.

\>\> Lorraine: Yeah.

\>\> Dan: Yeah.

\>\> Kelly: And I think we\'re silent on it now. But I also think that,
again, this is a recommendation through the FACA process, and if an
agency felt that it was appropriate to do something in addition to, you
know, our recommendation, you know, the Secretary and leadership would
have the ability to make that judgment. So I don\'t think that
recommendations are limiting, per se.

\>\> Dan: Absolutely not. We do not want them to do that.

Okay. So we\'re okay with that?

\>\> Charlie: This is Charlie. I was just wondering when we talked about
children, the wonderful thing about them is that actually \-- it
actually forces the personal-centered to family-centered PHRs, since the
children might not be accessing the records themselves, but you have
sort of the unique problems of collaboration that are implied by it. And
I think that was part of the reason for pushing that domain.

\>\> David: I think you\'re right.

\>\> Dan: And of course that goes with the bullet \-- the suggestion
about the bullet point for the juvenile State policies and laws on
privacy.

All right. If we\'re set with that, are there other areas, other
recommendations that anyone feels like really need to be addressed at
the May meeting?

\>\> Ross: I have a question about the recommendations that have earlier
time lines associated with them, like the 1.3 on the CCHIT. While it\'s
maybe not necessary for implementation of the breakthroughs, it\'s \--
it\'s a near-term deadline. Do we just put those in that second bucket
that Dr. Brailer was describing? Because they don\'t require action by
the Community other than maybe endorsing that and saying, "Yep, we want
CCHIT to do that"?

\>\> Myrl: This is Myrl; that was my understanding, is that we make sure
that they are included in the PowerPoint presentations, and the people
are aware of them, we can certainly be asking for guidance or input. But
they wouldn\'t be in the initial letter.

\>\> David: I can\'t \-- this is David. I can\'t comment on whether you
should put them in or not. But that second category is something we
envision you asking them for directed comments on. So put things there
that you do want them to discuss, and we\'ll use that for agenda
management.

\>\> Dan: In that regard, are there others? Any of these recommendations
should be \-- where we should solicit comment, before moving on to
create that broader paper in the June, July time frame in.

\>\> Gail: Are you asking if our other recommendations should we include
them, all the others that we have in this draft letter, be part of the
PowerPoint, in which case I would say yes. I mean, we can always use
more input. But it does flag for the larger group the kind of thought
we\'re giving a little bit longer term.

\>\> Dan: My thinking is we wouldn\'t put off \-- I mean, this of course
is just my idea, subject to the group\'s view, but that we wouldn\'t put
all of the recommendations in the PowerPoint, just the two or three or
however many there are, where we specifically need or require \-- or
request \-- additional thoughts in order to help us with our
deliberations.

\>\> Gail: That\'s fine. If that\'s what everybody feels. And then we
need to decide which ones those are.

\>\> Dan: Precisely. Any other thoughts on that? Am I off base? I know
we\'re catching you all kind of all at once on this, and so I realize
that you may not \-- may want to have an opportunity to go through these
a little bit. Would it possible for you all to respond to \-- Kelly,
would it be possible for them to respond to you on they \-- that any of
the members feel?

\>\> Kelly: That would be great. Actually, it would be great if you
could send e-mails to Katy Barr, myself, and Kathleen Fyffe.

\>\> Dan: Three heads are better than one.

\[Laughter\]

\>\> Myrl: Who is this, Katy and?

\>\> Kelly: Katy Barr, Kelly Cronin, and Kathleen Fyffe.

\>\> Dan: If you don\'t have their e-mail addresses already, you\'ll
find them in the header to the announcement of today\'s meeting.

\>\> Myrl: Right. But do you all have a sense already of \-- that there
are some that would kind of clearly break out into we need more
guidance, and some that will not, and we just don\'t mention them at
all?

\>\> Kelly: Well, I think that there\'s been a lot of discussion in the
Workgroup and I think in part our last Workgroup meeting on some of
these issues, like for example the need or the timing of developing a
PHR functional model, or determining functional requirements, we
weren\'t quite sure who to name and industry to do that type of work, or
whether it really belongs in the work group to consider at least maybe
some prioritization of high level descriptions of functions \-- or high
priority functions for PHRs. And again, this might be a longer-term
issue, as it relates to the broader charge. But I think during a lot of
our discussions we were highlighting all the activities that are going
on in the marketplace, and we felt like we couldn\'t be too slow in
reacting to this. Particularly if it\'s going to be in any way a
precursor to certification.

\>\> Myrl: You know, this is \-- this is Myrl. It would be very helpful
to me, and I think I\'d like to suggest more efficient, if you all could
send us an e-mail saying just the numbers, you know. We suggest that
these are the two or three that are going to go forward now. These are
the things we\'re going to ask for more guidance and it could be 3.0,
3.1, whatever. And then some that you\'re saying we probably have enough
input, we don\'t need to have them in that PowerPoint. So that we can,
as a group, just respond, "Yes, we agree" or "Yes, we\'d like to move
this one from here to there." Otherwise, you\'re going to get either not
a lot or you\'re going to get information from people just singly and we
won\'t really know what the others are thinking.

\>\> Kelly: Okay, well, we\'ll follow up at the end of this call and
send you all out an e-mail.

\>\> Dan: Thank you. That would be helpful. I notice we still have \--
this is on 1.4 still, is not fully functional.

Okay. Is there general understanding and consensus of what the product
is in general terms going to look like now? We have a May 8 due date.
When do we think we can see a revised letter? And who needs to work on
that?

\>\> Kelly: Yeah, I mean if it would help the process along, since we
probably have another four days to wrap this up, why don\'t the three
K's (Kelly, Katy, and Kathleen) take a stab at updating the letter? And
I think we probably should reach out with the people who had specific
comments on the call today to make sure that we\'re capturing their
thoughts accurately. But that we try to do the redrafting based upon all
the input, and then get something out to folks by the end of tomorrow?

\>\> Myrl: That would be great.

\>\> Dan: That will work well. And I encourage anyone on this phone call
that has additional thoughts or does \-- or after getting off says, "Oh,
gee, I wish I would have said this," please send those thoughts directly
to Kelly, Kathleen, and Katy. Did I get that right? Okay. Any additional
\-- before I request public input, are there any additional thoughts,
comments, concerns? Gail, specifically, do you have any other comments?

\>\> Gail: No, Dan. I think that getting something, a revised draft,
will be very helpful to everybody, because I think parts of this were
confusing today, so as soon as we get, that I think that will be very
helpful.

\>\> Dan: Any other thoughts and comments? All right, then, Matt, if we
could open it for public input.

\>\> Matt: Sure. If there\'s members of the public on the phone
listening right now, you only need to press Star 1 on your phone to make
a comment. And if you\'re following along watching the Web cast you\'ll
see instructions on the screen about calling in. And as always, maybe 2
or 3 minutes to get through to the operators and if there\'s people that
want to make public comments after that, we leave an e-mail address
where you can submit your comments.

\>\> Dan: Thank you, Matt. And I wanted to especially thank all of you
on the call today. I know this isn\'t what you initially intended, but I
think we\'ve done a very good job here today, and we\'ll be able to meet
our deadline with a solid product and for the May 16 AHIC meeting. And
all of the other work that\'s been done to date will be used going
forward for our follow-up assignment, which is going to be on a broader
policy scale. So thank you all very much for your comments and
cooperation. We were quite efficient. Just a little \-- actually a
little less than an hour since we got started a few minutes late, so
thank you all very much.

\>\> Matt: There\'s a member at the public at the ONC building that
would like to make a comment. Go ahead.

\>\> Deb: My name is Deb Madison, I\'m with (inaudible \-- Dunn and
Klein?) and we\'re currently bringing information to consumers, but
we\'re dealing with a lot of stuff on the claims side. And there\'s some
issues that will affect those claims and the medical records. Our tool
is designed eventually hold medical records but because of volatility
with the provider environment we\'re kind of sitting back. But some of
the issues that need to be addressed, and I don\'t know if it they\'re
administrative or if they\'re regulatory, and my legislators aren\'t
quite sure either. So we need some guidelines.

The American Medical Association creates order for the whole system by
maintaining the (inaudible) but for an entity like me, if I were to
present those codes to consumers, it\'s pretty pricey. Which doesn\'t
quite make sense that we bill people for something and then you\'re not
going to show them unless they pay again. In that type of medical
records \-- I\'m sorry. This type of specific claims go into the medical
records how we get this into the consumer\'s hand, not just the medical
provider\'s hands. We\'ve been struggling with some things, the rest of
the industry pays for the UPC code and it\'s part of the operational
service \-- our RFIDs. I would suggest that the health care industry
look at some of those standards. Also, there seems to be a lot of
emphasis on insurance coverage, and I\'m not quite sure if this is the
area or electronic records. But on providing insurance for everybody.
Not sure that should be the emphasis as much as the quality of care, the
medical records which this group is focusing on. I wasn\'t quite sure
how \-- but we\'re even running into roadblocks, trying to bring
information to the individuals with their medical records, because
insurance companies privacy rules so we can\'t even show individuals
what their medical records are. Because there doesn\'t seem to be some
standards on how that can be disseminated. And I don\'t know if some of
that is for other reasons. But as we\'re trying to bring information, a
lot of times we don\'t get diagnosis information or procedure
information. But the procedure is probably tied to AMA, and sometimes
personal health information. If we\'re going to bring the claims
information and medical records to an individual, we need their personal
information to be able to tie information together.

Our system is that \-- and without knowing how we\'re all set up, it\'s
all electronic. People aren\'t looking at this information. We do an
original database, and it will automatically feed in. But there needs to
be some standards where insurance companies and providers feel
comfortable sharing information with third party objectives, where
we\'ve had a warehouse, knowing there are going to be some rules and
regulations monitoring how we take that information and then give it
back to the consumer. The way we\'re set up, we\'d also be storing the
medical records for them and their claims history.

There needs to be an auditing process, and there\'s not very often you
run into somebody in a business that wants an auditing process. But I
think in this case, it\'s real important whether it\'s medical records
or claims information, that the public knows that there\'s some process
monitors who is accessing the records and that somebody can come in and
do that.

The privacy rule and this kind of touched on the use thing. Medical
records right now \-- and I\'m just throwing a few things out, I don\'t
know how you want to deal with them and whether you think they\'re
important to what you\'re trying to do.

An employee, if a program is new an employee, the employee has to
contract through the employer with the insured. The question is if a
spouse or a minor do not agree to share the medical records with that
individual. When it comes to the financial aspect of it if I have a high
deductible, \$5,000 deductible and somebody goes for care, but I\'m not
allowed to see it, who pays, who is responsible for paying those
records. A lot of the State had children going for reproductive. Well,
okay, they can go in, who is going to pay that amount for that care? Are
you going to charge somebody for that care without telling them, which
in essence you\'ve already told the parent what it was for. Which I
don\'t want to be part of. Until some of those guidelines are set. The
same thing comes in with divorce, who owns what records. If it\'s pooled
and there\'s a divorce. Obviously, each person would own their personal
record but who owns the financial aspect of that information? I know
this is a whole other aspect that you guys haven\'t considered, but the
dollar amount and the claims information is tied to the medical records,
and hopefully in the future when people have medical records, a lot of
their medical history and stuff can be updated through the claims
process and things going on.

So these are things that when I was reading some of the notes, we
weren\'t seeing addressed. We\'re struggling and trying to get
information to the consumer, and the only one right now really making
efforts and strides toward getting that information to people. So
guidance on how we should approach this would be very helpful.

\>\> Dan: Okay, thank you very much.

\>\> Matt: That\'s it for public comments, Dan.

\>\> Dan: All right, then. We have our assignments. Please get any
additional comments you might have to the staff at ONC. And we\'ll look
forward to the \-- I guess we\'re getting two products now. The \-- a
quick look at what recommendations might go into the PowerPoint slide,
as opposed to the letter or holding off, and then the second thing will
be by the end of tomorrow or the next day, I can\'t remember. Tomorrow,
a revised letter.

\>\> Myrl: This is Myrl, is there going to be any response now or later
to the person that just raised the issues on the phone from the public
comment?

\>\> Dan: I think that will have to be from ONC.

\>\> Kelly: Yeah, you\'re welcome to respond to the comment as a
Workgroup member.

\>\> Myrl: I don\'t know if I\'m the best person to comment. I just
think that the individual needs to be acknowledged and maybe it\'s
whether our group will take these \-- or we\'ll try to find the right
place to have them addressed. I thought they were important issues,
really important. Or to ONC, but somebody would somehow get back and let
them know that we heard and we\'re at least getting the information
before the right people.

\>\> Kelly: Yeah, I mean I think there\'s now a public record of the
comments. I think \-- I think it would be even more helpful to have
something in writing. Okay. So I think written testimony would probably
be easier to respond to. And I think that that will probably happen.
It\'s already prepared.

\>\> Dan: Thank you very much. All right. If there\'s no additional
business, we stand adjourned. And thank you all for your cooperation and
attendance today.

\>\> Kelly: Thank you.

\>\> Myrl: Thank you.

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