Transcript of the May 22, 2008 NCVHS Full Committee Meeting

[This Transcript is Unedited]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

May 22, 2008

Renaissance Washington Hotel
999 9^th Street
Washington, D.C.

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030

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Table of Contents

• Call to Order
• Letter from Standards and Security, Action
• Subcommittee Strategic Work Alignment – Workplan Ideas
• NCVHS 60^th Anniversary Celebration

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P R O C E E D I N G S [10:15 a.m.]

Agenda Item: Call to Order

DR. COHN: Good morning. May everyone be seated. Yes, want to call this
meeting. This is the second day of meetings of the National Committee on Vital
and Health Statistics. The National Committee is the statutory public advisory
committee to the U.S. Department of Health and Human Services on national
health information policy.

I am Simon Cohn. I’m Associate Executive Director for Kaiser Permanente and
currently chair of the committee. I also want to welcome committee members, HHS
staff, and others here in person and welcome those listening in on the
Internet. As always, I want to remind everyone to speak clearly and into the
microphone.

With that, let’s 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 publicly indicate during your introduction. I want to begin by
observing that I have no conflicts of interest. Marjorie?

MS. GREENBERG: Does this work at all? Oh, okay. Good morning. I’m Marjorie
Greenberg from the National Center for Health Statistics and CDC and Executive
Secretary of the Committee.

MR. REYNOLDS: Harry Reynolds, Blue Cross and Blue Shield of North Carolina,
a member of the committee, and no conflicts.

DR. STEINWACHS: Don Steinwachs, Johns-Hopkins University, member of the
committee, and no conflicts.

DR. CARR: Justine Carr, Beth-Israel Deaconess Medical Center, member of the
committee, and no conflicts.

MR. ROTHSTEIN: Mark Rothstein, University of Louisville School of Medicine,
member of the committee, no conflicts.

MR. HOUSTON: John Houston, University of Pittsburgh Medical Center, member
of the committee, no conflicts.

DR. FERRER: Jorge Ferrer, Veterans Health Administration, Ethics Committee,
no conflicts.

DR. MIDDLETON: Blackford Middleton, Partners Healthcare System, Brigham
Womens Hospital, no conflicts.

MR. LAND: Garland Land, National Association for Public Health Statistics
and Information System, member of the committee, no conflicts.

DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the committee,
no conflicts.

MS. MILAM: Sally Milam, West Virginia Health Information Network and the
West Virginia Healthcare Authority, new member of the committee and no
conflicts.

MS. TRUDEN: Karen Trudel, Centers for Medicare and Medicaid Services,
liaison to the full committee.

DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality, liaison to the committee.

DR. STEUERLE: Gene Steuerle, Urban Institute, member of the committee, no
conflicts.

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

MR. BLAIR: Jeff Blair, Lovelace Clinic Foundation, member of the committee,
no conflicts that I’m aware of.

DR. WARREN: Judy Warren, University of Kansas, School of Nursing, member of
the committee, no conflicts.

MR. BIRNBAUM: Adam Birnbaum, Blue Cross/Blue Shield Association.

MS. WILLIAMSON: Michelle Williamson, CDC’s National Center for Health
Statistics.

MS. MCANDREW: Sue McAndrew, Office for Civil Rights.

MS. JEANSONNE: Good Morning. I’m Angela Jeansonne. I’m with the American
Osteopath Association.

MS. JONES: Katherine Jones, CDC National Center for Health Statistics.

MS. KAHN: Heidi Kahn, CDC National Center for Health Statistics.

MS. BERNSTEIN: Mia Bernstein, Office of the Assistant Secretary for Planning
and Evaluation.

MS. JAMISON: Missy Jamison, CDC National Center for Health Statistics.

DR. DEERING: Mary Jo Deering, National Cancer Institute.

MS. KANAAN: Susan Kanaan, writer for the committee.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC,
committee staff.

MS. BENNING: Denise Benning, CMS lead staff to the Standards Subcommittee.

MR. HEFNER: Henry Heffner, NIH Clinical Center.

MR. Kalmer: Frank Kalmer, American Dental Association.

MS.FULLER: Sandy Fuller, the American Health Information Management
Association.

MR. RODIE: Dan Rodie, American Health Information Management Association.

MS. MCCALL: Carol McCall, Humana, member of the committee, and no conflicts.

MS. FRANCIS: Leslie Francis, University of Utah, member of the committee and
no conflicts.

DR. COHN: Okay, before we get into the agenda review, we have a couple of
little housekeeping items here. Now first of all, I just want to personally
and, I think, also speaking for Mark Rothstein want to express our appreciation
to the committee on a very memorable evening last night. So we want to thank
you all from the bottom of our hearts.

Now the other piece of housekeeping, another of our committee members
actually finishes his term, and we have mentioned him previously but he’s never
been in attendance when we’ve had an opportunity to express our appreciation.
So we have Gene Steuerle in attendance, we want to just take a minute and
acknowledge him. I think as you all know, he is a former deputy assistant
secretary of the Treasury and is currently a senior fellow at the Urban
Institute, though I was told yesterday that you will be transitioning to a new
role with the new foundation within the next several weeks.

DR. STEUERLE: I’m going to be vice president of the Peterson Foundation.

DR. COHN: Okay. So congratulations on all that. We obviously want to thank
you for your involvement and participation on the committee as well as the
Subcommittee on Populations. I personally really very much appreciated your
insights at the full committee level on our discussions. I know you’re not the
most I guess forward or talkative of subcommittee members. But typically your
insights, I think, have elicited a lot of conversation around the committee on
various topics. I’m actually reminded of one in particular which I’m sure will
continue on long after you and I are both off the committee, but discussing
issues around cost benefit of various privacy policies which I know elicited a
very significant privacy subcommittee conversations.

So I just want to thank you for bringing up new and sort of insightful
topics for discussion at the committee and subcommittee level.

Now I know I’m not the only one who wants to make any comments. And I think
– Harry, did you want to comment?

MR. REYNOLDS: Yes, I sure did. I guess what’s been so important to me about
Gene being on the committee is if you spend any time sitting with him at dinner
or you talk to him, he always gave you a different way of thinking about it.
And it was funny because not too long after we joined the committee, I happened
to be going through the TV and I went by CSPAN and I said I know that guy. And
you know, I actually sat and listened two or three times to him on CSPAN.

And what you find is it’s not how often your voice is heard. It’s the way
you think. It’s the way you deliver. It’s the way you participate. And you’ve
always done that, and that’s the one thing I’ll really miss about you is that
you didn’t hung up, and some of us went at things linearly because we knew the
subject. And you were always willing to step back from it and not buy into the
subject and ask a different question. So I truly have appreciated it. Thank you
very much.

[Applause]

DR. STEINWACHS: Well, I just wanted to add to it from the perspective of the
Population Subcommittee and that echoes what you’ve heard already. You kept
reminding us that it’s not only to analyze opportunities but try and identify
opportunities that might be transferred into action relating to data and the
use of data and information. And so Gene is to remind us that, you know, part
of translating into action was that there was really some leverage there, that
someone could see what you were proposing would really leverage assets and
investments. And Gene is responsible about 101 percent for our moving into data
linkages which is, I hope, a continuing area for the Population Subcommittee to
try and look out how do we maximize the value to the American public of the
huge investments we make in health data all across the system as well as data
that’s needed to interpret health data such as lifetime earnings. We talked
about being able to tap into Social Security. They told us there was a vault
over there. But you know, if you had the proper explosives, you might be able
to get in. Taping into the IRS, even tougher, you know, in a sense and so on.

But the hearings really pointed out that many of us thought the problems on
linking data and accessing data was really only for those in the private sector
wanting to get the data that the government held and found out that the
barriers were as high and sometimes higher when two government agencies come
together and say we’d like to link our data that’s over here to your data over
there to answer our policy question. And that if Jim Scanlon were here, he
would echo that the frustrations of ASPE when they have a policy issue that
could be answered by linking some data sets and the time it takes to link that
data sets may be 18^t months and it’s no longer a relevant policy
point to address – maybe a recurrent one that you’d want to address in the
future.

The sort of perspective already mentioned, the sort of cost benefit. Gene
was wonderful about reminding everyone that many times we over weigh certain
risks and under value specific benefits. And so when we talk about privacy and
the security arrangements and maintaining confidentiality, we don’t at the same
time balance that if we take a little bit of risk, we may have a huge benefit
by bringing together data sets that really tell us a lot about the health,
wellbeing and the trajectories on which populations are moving in health.

And that the discussion many times gets too one-sided without taking a step
back. So we’ll miss you, Gene. We know that according to Marjorie once you’ve
been enlisted here once, you’re forever on call. So that we may be able to
judiciously draw you back into these conversations. But I think you set a
wonderful tone and standard for both the Population Subcommittee and the
committee overall. Thank you.

[Applause]

DR. STEUERLE: These comments were more than kind and more than deserved. But
I have to say I’ve been extremely honored to work with the members of this
committee. And those of you who are new will start to feel the same way.

In some ways, it’s professionally it may be one of the most rewardless
tasks.

[Laughter]

DR. STEUERLE: I only mean this in the sense that it’s not something that you
can take back to you, if you have bosses or something, you can take back there
and they say wow, this is really good. Take some more time off and do this.

But personally and in terms of your knowledge of subject matter, it’s
extremely rewarding. And as I say, the dedication that people have to this task
and the time they devote to it, I’ve never been on a committee – I’ve been
on a lot of committees. I’ve never been on a committee that works as hard as
this committee, and it’s just overwhelmingly impressive, and I’m extremely
honored.

And I’d like to add that thanks beyond the members of the committee, all the
staff people, particularly the people that often even sit on the sidelines and
often don’t even get to sit up here and talk. I’ve long believed that in
consulting rows that it’s usually the staff that has the knowledge and the role
of the consultant is to find out what the staff knows and bring it to the
floor. And I think that’s especially true in this case. And having to serve the
government 15 years, I know very much what it’s like to sit in the side chair
as well, and I’m extremely thankful to all of you.

DR. COHN: Now moving on to an agenda review, Gene, thank you. Actually we’re
very pleased you actually were here so we could talk to you face to face rather
than – you hearing about all the nice things we were saying about you.

Now let’s just talk about the agenda for a minute. Now we have a brief item
that Mark Rothstein wants to bring forward. From there, we will have a
discussion document being brought forward by Justine Carr from the former
Quality Work Group, now the – well, we’ll talk about that later on today.
The title of that work group at the report out, which of course is the next
item for the agenda.

And this will be an area obviously the incoming chair will facilitate that
part of the conversation which is sort of the discussion from each subcommittee
and sort of plans for the next six to twelve months in terms of at least some
of the early thinking going on in the subcommittee.

Now we will finish off the session by talking about the 60^th
anniversary and plans for that, and Marjorie will do that. And as I said, we
will shortly be done by one o’clock, if not a couple minutes before. We’ll see
how the day goes.

Okay, with that, Mark can bring up your issue and item.

Agenda Item: Subcommittee on Privacy and Confidentiality
Monograph

MR. ROTHSTEIN: Yes, thank you, Simon. I have been directed by the
Subcommittee on Privacy and Confidentiality to request consent and approval
from the full committee on the idea of publishing in a format similar to the
one that was used for the secondary uses report a summary of the text of two
letters dealing with privacy and confidentiality. Our June 2006 letter, which
is privacy and confidentiality in the nationwide health information network
which is our sort of framework letter, and our February ’08 letter, the most
recent one on sensitive information in healthcare settings.

It’s the sense of the subcommittee that publication in this format and in
addition to on our website would be very valuable to a broader audience. And we
would request that staff use its judgment in figuring out how best to put this
together in consultation with the co-chairs of the subcommittee, Leslie and
John. So that is the period.

DR. COHN: And I’m sure you meant the new executive committee, the
subcommittee chair.

MR. ROTHSTEIN: Everybody, yes. So that is a motion that I would like to put
forward on behalf of the subcommittee.

MS. GREENBERG: Second.

DR. COHN: Okay. Is there any discussion? Judy and then Marjorie.

DR. WARREN: I have stepped in and kind of heard the last part of the
discussion of the committee on this. And one of the things that I do at home in
Kansas is I’m part of the steering committee of our HISPC Project, and I take a
look at what’s in those letters. And although I’ve directed people to look at
them, if it were in a publication format like that, it would be incredibly
valuable at the state level.

And so what I would encourage is to add on that that when it becomes a
report and we release it to all the HISPC states as part of their work so they
could follow up on it and probably the 16 NHIN demo sites. And I think it would
make a huge impact.

DR. COHN: Marjorie and then Joe.

MR. BLAIR: Yes, I want to echo Judy’s comment because I’ve been sharing,
same situation. New Mexico’s one of the health information and security privacy
collaborative states, and we’ve been struggling to try to what seems to be an
almost impossible job is pull consensus together on privacy. And those two
documents I have distributed what some people feel a little bit daunted, and I
think it would help tremendously if we had it in a package that makes it a
little bit more inviting for people to read it.

MS. GREENBERG: I think that both comments just were supportive of what I was
going to say. First of all, I know we have certainly talked about this, and we
are fully prepared to do this. And I think I want to thank Debbie Jackson for
facilitating the version of the secondary uses report that came out. I mean,
she – you know, so much follows on what Gene said. You just do not know
what goes on behind the scenes. You get an idea, and then it gets executed.
It’s sort of like making sausages. The product is good, but you don’t want to
know what went on in between. And you know, I won’t go into details. But I
think Debbie is, you know, she’s the perfect person for you. And we’re giving
you another one, Debbie.

No, but she’s very – developed a very effective relationship with our
publications group or whatever. But no, and they’ve worked – they’ve
certainly worked very hard on this, and we got a lot of help from Susan
Kanaan(?) and also, I think, Mary Jo also – Mary Jo Deering.

But I think what we would need, and I don’t know if you discussed this,
would be some kind of letter – not letter, introduction that would, you
know, put this in context, introduce it, wouldn’t break any new ground. I mean,
and would maybe do what Judy and Jeff are saying is sort of make the letters
more accessible by, you know, sort of highlighting what sort of the main issues
are that were covered and what the whole purpose was of the committee in doing
this.

And then, I think, that would make a nice package. I mean, I don’t think we
– we can’t just, you know, put these letters between binders. And then we
can do like we –

MR. BLAIR: Marjorie, could I piggyback on your suggestion? For
consideration, I don’t know if they want to call introduction or preface, but
ONC has been using both of those letters with respect to the DERSA(?)
Workgroup, and it might be very nice for us to consider whether Kolodner might
do the preface for that.

DR. ROTHSTEIN: Well, I think what we need to do in some introduction or
letter of transmittal or something is explain where these documents came from.
What I think we’ve figured out is to take it out of the letter format and make
it more like an accessible report. And so we need to track how this came about,
you know, that it reflects two separate letters, the full versions are
available at certain places, et cetera. And so I’m sure either the committee
chair or the subcommittee co-chairs would be happy to prepare such a document.

MS. GREENBERG: Well, I just asked Susan, and she’s willing to work with us
on this. So I don’t know, we can discuss, you know, any kind of other thing.
But I’d like us to actually get started on it as soon – well, you know,
hopefully have it done by – I’m not giving a date. But we will definitely
work with the new committee chairs on it.

DR. WARREN: I was going to say part of the discussion that I heard is they
were already discussing ways to pull the letters apart and to put them into
what I thought, knowing my constituency and how they read these things, in the
letter format they had a hard time wading through.

MS. GREENBERG: Okay, good.

DR. WARREN: But in the format they were discussing this morning seemed to be
much better at really helping people walk through, and here are the issues,
here’s some recommendations, and they had some ideas for appendices and stuff
like that. But I’d like to see the committee kind of follow through.

DR. COHN: John?

DR. HOUSTON: Actually, I guess I’m of the opinion that what we want to do as
little change as possible, and I think because you don’t want people to either
think that these are separate works unrelated to the previous letters. But
these are – my understanding really intended to be restatements of a
letter that is sort of reformatted in a way that would make them more
accessible. But we clearly don’t want to change substantively what these things
say. So I’d almost, you know, because we talked before about should we merge
them, should we try to integrate. And now I think these things need to sort of
stand as though they’re letters. They’re put in a little bit of a different
format that allows them to be sort of like a monograph, but still not changed.
I don’t want to change any meaning. I don’t think we should try. So I’m a
little afraid about doing too much formatting or changes in not layout.

DR. COHN: I think you’re probably okay with changes in format. You’re
probably not happy with changes in meaning unless it comes to the full
committee.

DR. HOUSTON: Meaning or where things are, internal organization because we
took a lot of time, I think, to decide how the organization should be. And I
wouldn’t want people – somebody to think that it was a different work or
–

DR. COHN: Carol, I’ll let you go, and then let me see if we can put this
together because I don’t think we want to spend the whole morning discussing
this particular point.

MS. MCCALL: Yes. I think the concept, I think, is a very powerful one, and
it’s one of kind of repackaging a work product for different audiences. And
that’s a theme that came up, you know, that Harry brought up when talking about
how we organize ourselves.

And so this may be some of the early work and efforts where there’s a lot of
learning that we do about how to preserve the message while changing the format
and the content to the extent that it makes it more easily consumed but doesn’t
lose the point.

And so I think a certain amount of care as we build this as a competency
makes sense. And I think some of the points that John just brought up can be
thought about in some of these kind of first attempts to do this.

And then I’d like to see us do this – take it into consideration every
time there’s a significant output that we think about the different formats
that make it more relevant for different constituencies so that it’s not always
a letter. The letter is to a secretary. And what Judy talked about is something
that’s said with a few tweaks, you know, I can take this and really make it
valuable and useful and actionable to different audiences.

And so that we take the broader theme with this as a first effort, the thing
about how we do it at tempo all the time.

DR. COHN: Well, you know, Carol, I would agree with you. And I actually want
to wrap up this particular conversation. But the issue, I mean, there’s two
pieces here.

One is obviously Mark’s motion which relates to the specific pieces, and I
do think we need to consider that. I think the other issue has been one that’s
been on the Executive Subcommittee agenda now for some time, and I’m happy to
refer it back over to our new Executive Subcommittee for further consideration
because you’re absolutely right. I mean this is – I mean I think we write
beautiful letters, but they’re not always quite as approachable as I think we’d
like them to be for people who haven’t been part of the process or don’t have
all the technical expertise to understand the reasons why we have done things.

And so far, people like Susan Kanaan(?) and others have, I think, done an
exceptional job of taking some of our very good but sometimes very lengthy and
relatively complex letters and reports and simplified them in a way that didn’t
destroy meaning which I know was John Paul’s concern.

The good news is all of this is that typically anything that’s developed
doesn’t need to go through subcommittee chair review, does need to go through
the review of the executive subcommittee before it gets published, which I
think I something we would want to have in all cases to assure that meaning is
not inadvertently modified, and certainly I think we all share that view from
John Paul.

Now with this, I mean, is there a question – do you have a question
before we vote on this one?

MS. JACKSON: Just kind of basing the layout on the personal health records
is one of the first examples that we had where we packaged from an incredibly
rich document and then brought that out and made that visible and accessible,
and then this. I’d like to have a contact person to keep up with the things
that they changed. Just enhanced uses just so you know by the time I had a
design for the cover and the actual text was finalized, there was a change, a
tweaking in the name for the cover, you know. Now using all data or data, there
were things that were going on, it was so fluid, it was so changing as we were
in production that it just kind of made it difficult.

So as close as we can get to something finalized that once you get ready to
go to the press and you get it in, then it rolls, that would be helpful.

DR. COHN: Okay. And I don’t want us to go down this particular conversation
because that’s an executive subcommittee issue.

DR. FRANCES: Right. I was just going to say that John and I will be happy to
make sure you have all the contact you need, and you can count that as
volunteering me.

DR. COHN: Okay. So is there any further discussion, or can we move to a vote
on this particular issue?

(Motion passes.)

Agenda Item: Subcommittee Strategic Work Alignment
– Workplan Ideas

DR. COHN: Justine, I think you’re on for a review.

DR. CARR: I apologize that my plane is taking me out of the meeting early
because I have to go to my son’s graduation. But I will try to hit the high
points on this. So included in your book is a draft entitled 23 building blocks
for quality – the view from 2008. This report is an opportunity to
recognize the 2004 vision of the NCVHS and the quality workgroup and
identifying priority initiatives to move the national quality agenda forward.

The 2004 report was quite extensive with 23 what we’ll call candidate
recommendations, and these fell into four areas: (1)assessing health care and
health outcomes; (2) reducing disparities in quality; (3) building the data
infrastructure to support quality improvement; and (4) balancing patients’
interest and healthcare quality and privacy.

After this report came out in May of ’04, it was really only the first eight
candidate recommendations for which we held hearings and had a lot of very
excellent input. So then earlier this year Michelle Williamson and Bob Davis
took on the task of going back four years later to these recommendations to see
what had happened. That was followed by more input and discussion in the
February meeting, rounding out a bit more narrative. Some of these
recommendations are very narrow having to do with very specific standards to
enable reporting of healthcare. Others are kind of visionary statements. And in
fact, with all the work that’s gone on in the last four years with ONC, AHIC,
National Quality Forum, AHRQ, there has been a proliferation of activity in
many of these areas.

Susan has done her usual magic in taking the thoughts and the updates in the
various areas and putting this together, identifying each of the areas, and
actually taking it one step further to say how would we score the particular
recommendation, the lowest being one, the issue remains open, or a score of two
means the process has begun or a score of three is that demonstrable progress
has been made.

This is very subjective and obviously qualitative, and we can use it or not.
But I think it helped carry forward the discussions in February. So that as we
look at this work that was done, the recommendations, are there themes that
really have remained stock and do they need help. Is there something that NCVHS
could do or would want to do to further address them.

Let me just give you a brief summary of those four areas. There were ten
recommendations for assessing healthcare and health outcomes and an average
score as scored of 1.9. Reducing health disparities, there were three
recommendations and an average score of 2. Building data infrastructures
supporting quality improvement, 9 recommendations with a low score. The average
was 1.4. Many of those recommendations really are open and some of which we
heard about yesterday. And then finally balancing patients’ interests and
healthcare quality and privacy, there was one recommendation scored as 2.

The detail in this report is, I think, beyond the time constraints that we
have to go through line by line. And I think as we think about it, there’s a
couple of things, starting points perhaps. And one would be to think about,
let’s see, what do we want to do with this. I think that this is really follow
up on – I think the point of this is to say that NCVHS has had a great
vision, and it was very nicely articulated in 2004. And as we look back four
years later, many of these things have moved forward. And so it’s a way of, I
think, recognizing the vision of these recommendations.

I think what we heard yesterday from Betsy Humphreys about the mapping and
the coding continues to be an area of concern, and that would be perhaps one
area we would want to make a recommendation. However, my recommendation is that
we use this just as an interim report, have sign off from everyone and not try
to do more with it than just to have it as an update. We have a number of very
exciting agendas in front of us, and I think this is a great document to refer
back to and perhaps some of these will come forward in our new agendas.

But because it was such a large piece of work and, thanks to Susan, I think
it’s coherent and readable at this time, I would just like to put it before you
for consideration and ask what folks think about how to handle it.

DR. COHN: I saw Carol had her hand up. No, you didn’t? Oh, okay. So what I
think you’re asking is what do we do with this now?

DR. CARR: Right. I think I’ve gotten actually Marybeth Farquhar gave me a
couple of other updates that probably are worth including in here. It’s more
acknowledging here’s what’s going on. And so we have a couple of things that we
could include also that came out of AHRQ. But yes, what do you want to do with
this.

DR. COHN: Marjorie?

MS. GREENBERG: I agree that I think it has, you know, it’s a valuable
update. And I would think and there are a few questions you had asked me also
and we need to clean up a few things or clarify a few things.

But I would think at a minimum it should be posted on our website, the final
version. It doesn’t mean it has to be transmitted to anybody. But I think at
least it should be, you know, publicly available, and then I guess it’s up to
the committee if they want to do anything more with it.

I mean, we’ve talked about possibly transmitting it to the AHIC quality
group. But since that group is in transition, you know, I think –

DR. CARR: Yes, it’s very broad. And I think if we post it, they’ll see it. I
mean, much of it reflects work that they’re already doing.

MS. GREENBERG: Posting will point people to it.

DR. COHN: Harry, it looks like you had a comment.

MR. REYNOLDS: Yes, I think posting it would be great. I think it’s obviously
a resource for us as we continue. We’ve done this over and over again with the
large privacy letter and some of the other things we’ve done as we do it. I
would like to make sure that Justine’s note about the scoring being subjective
is clearly noted in the document.

DR. CARR: Well, it’s not something we’ve done before, and it could hold us
up to some kind of objections. So we could also –

MR. REYNOLDS: I guess that’s what – if it’s going to stay, then I would
like to be that way so that people aren’t reading it as we’re – you know,
we’ve had hearings or anything else to grate people and how they move forward
or not move forward on something would be –

DR. CARR: Well, we could put it in a terminology, you know. Rather than have
this score, we could just have three phrases. This is early, this is moving
along, this is complete.

MR. REYNOLDS: I think that plays better in an open audience.

DR. CARR: Yes, okay. I agree.

MR. REYNOLDS: Unless otherwise we need to adjudicate it and make the scores
something that’s meaningful and that we would be able to have hearings or other
things to substantiate. So I think that’s a great way to do it.

DR. COHN: Judy?

DR. WARREN: Yes, as I was thumbing through this yesterday and looking at it,
it seems to me that this report gives a lot of guidance or ways for the
subcommittees to work together because there is mentioned standards or where
that standards work has gone and its contribution and quality and stuff.

So we might want to look at this as we do strategic planning to make sure
that we address some of the issues that are coming up in this report so they
don’t fall between the cracks.

DR. COHN: Leslie?

DR. FRANCES: This is kind of a related question. I wondered whether as you
looked at this there were areas that you thought would be critical areas of
either where progress ought to be nudged if it’s started or where, if it hasn’t
started, it’s just really quite problematic.

Now I don’t know if you made any judgments of that kind. But when we
discussed this is February, it really was the quote mapping of the codes and
things that Betsy Humphreys was talking about yesterday we noted didn’t have
perhaps as robust and sustainable an infrastructure for not just the mapping
but the ongoing oversight. And I think that’s what we heard again yesterday.
And that would be the only thing in terms of whether we would make any kind of
recommendation about that or observation.

But, again, I think that more importantly we want to note it and bear it in
mind, but not devote new work to this, but bring this along as we are moving
into our new agendas.

DR. COHN: Well, Justine, I think you bring up – I think this is
probably a very reasonable proposal. You know, I did look through this, and I
think, as you know, had a bunch of questions many of which you couldn’t answer
nor could I.

DR. CARR: I see the glossary now.

DR. COHN: And certainly my view is that if this goes on the web as a NCVHS
white paper which is I think what you’re suggesting, I think people need to
actually review it to make sure it’s understandable and correct. I’m also
reminded and I’m just once again having been here since before there were, you
know, gigabyte hard disks on laptops which actually isn’t that long ago, but
long before that, I actually was reminded that there were a number of recommend
– one of the reasons these never made it out of draft was that there were
actually some recommendations that were not just controversial, but the
committee couldn’t come to agreement on whether they were even the right
recommendations.

And I’m thinking of some of the regs, for example, or some of the focuses of
how data is captured and all that. And probably the committee just needs to
make sure that, you know, that these things don’t move from candidate
recommendations to full recommendations in the process of the white paper
development.

DR. CARR: Right. Right. No, I –

MS. GREENBERG: I wouldn’t call it a white paper. I’d call it a status
report.

DR. CARR: Yes, status report. I think what’s interesting is the areas of
focus were the right areas of focus. The solutions have evolved with AHIC,
especially AHIC quality work. Well, a number of the AHIC work groups, they’ve
developed more fully. And what was looked for initially as a solution as a
claims attachment has evolved and is being thought about in a context broader
than a claims attachment. Or what you were asking me about is this charge, what
is that called, DC healthcare data services reporting document guide.

DR. COHN: So it was not DRG involved?

DR. CARR: There wasn’t DRG, no. It just had that in the title. But we need
to probably flesh that out a little bit. This has been a little bit of the, you
know, it’s serial rather than a parallel work process.

MS. GREENBERG: There is a glossary document.

DR. CARR: I know. I just made that yesterday because there were 40
abbreviations that I felt were a bit overwhelming.

DR. CARR: Okay. Well, Justine, let me just ask and obviously I should look
to Harry to make sure there were processes I recommend that he actually agrees
with at this point.

MR. REYNOLDS: I do today.

DR. CARR: Yes, it’s a – tomorrow you may disagree.

MR. REYNOLDS: No, anything we decide while you’re here, pal, sticks.

DR. COHN: Then the committee actually has its choice of a couple different
mechanisms. I mean, one is to provide input, have a next version come up at the
September meeting after which it would be finalized and posted. Alternately,
the committee can say this is pretty good. If there’s nothing directionally
terrible in this, authorize the executive subcommittee to further refine, get
input based on input from the committee, and then they can finalize it
hopefully over the summer.

Do you have a preference in terms of how you’d like to proceed?

DR. CARR: I think what would be helpful would be to ask each of the
subcommittee chairs to take ownership of the parts that relate to them and make
sure that it’s correct. And then I’m fine with it going to the executive
subcommittee. It’s such an overwhelming document, it’s hard to figure how to
even bring it here.

DR. COHN: Okay. So I would ask other committee members are you comfortable
with that approach? Do you want to make this a formal motion?

DR. CARR: Yes.

DR. COHN: Okay. So the motion is I guess basic acceptance of the document
recognizing (a) that all committee members will review it and submit questions,
suggestions for modifications to Justine or Paul. And subcommittee chairs will
also review their sections for accuracy and appropriateness.

All of this will be brought to the executive subcommittee for final review
and hopefully posting of the document on the website. Paul, am I correctly
characterizing this?

DR. TANG: Well, is there a less onerous way to approach this so that we can
move forward? Could this be an internal document that is shared. What I heard
Simon say is that some of it wasn’t necessarily things that you’d want to go
without other kinds of approvals. And I’m just saying we need that to go
through an approval process or just be input to the rest of the workgroup and
we just move forward without –

MS. GREENBERG: Are you giving me the mike. I mean, I think you make a good
point that the reason we kept them as just candidate recommendations was there
wasn’t necessarily agreement on the approach.

I think as priorities – as problems that needed to be solved, I think
there was agreement. It was more on some of the solutions. But I think the
advantage of having this at least be – well, first of all, of course we
are a FACA committee. So everything we discuss is available publicly. It’s just
a question of how we make it available. I mean, you know, anybody could come
and ask for it obviously.

But we’ve been talking about pushing things out, you know, in different
ways. This would be sort of the most innocuous way, I guess, or the simplest is
to just put it on the website once you’ve agreed to it.

But there’s some advantage here to kind of, you know, some of the
stakeholders who are involved in standards organizations, I mean, the
disparities is a problem. So they’ve looked at ways to try to address it, you
know, and in some cases it made some progress. In other cases, they haven’t.

But I think it does kind of keep these issues in the discussion. So you
know, as people are looking at different approaches to trying to solve problems
that the committee basically felt identified in this report and I think for the
most part still feels, you know, are important, at least it puts out there this
is what, as we view it, these are the things that have happened, and these are
things that not much has happened on, et cetera. And then they’re available to
other people to, you know, they could disagree with it but also to say, well,
this might be an area we might want to look at again.

So keeping it just internal, it seems to me, you lose that benefit.

MR. BLAIR: I’m a little bit torn. I have a concern. I’m not exactly sure if
I have a specific solution. I’m afraid that if we have all of the members of
the committee review it for – I think the words you said were, what,
accuracy and appropriateness? Was that what you said?

DR. COHN: Well, that’s what came out of my mouth, I think. [MISSED ON
TAPE]

MR. BLAIR: Well, the only thing I’m thinking of is that right now it’s a
list of candidate recommendations. And if people review it from the standpoint
of wordsmithing those recommendations or a comfort level, then this becomes a
process that takes months and months.

DR. CARR: I think we could elevate them from candidate to historical.

MR. BLAIR: Or NCVHS recommendations. So like I say, I don’t have a specific
suggestion. I think the intent here is to try to get them out in some form
beyond the committee itself. And I think the second intent is to retain it, I
think, as candidate recommendations.

So maybe if there is review, it would not be reviewed to make them formal
recommendations. Is that correct, Marjorie?

MS. GREENBERG: Yes. I don’t think you’d want to touch the recommendations.

DR. COHN: Yes.

DR. CARR: No, they’re historical recommendations. It’s just an update
document of what we thought in 2004 leading up to 2004 and what actually
happened. But that’s a good point to make it clear that these are historical.

DR. COHN: Yes, and really what we’re just talking about is review of the
framing language around as well as what we’re saying about those
recommendations. Because, Jeff, you’re right. I don’t think anybody’s
recommending going back and revisiting whether those recommendations are
necessarily the right ones. It’s more how do you frame the stuff around what’s
happened since. Don, you had a comment?

DR. STEINWACHS: Well, I think it’s probably on the same vein. It seems to me
this is sort of a working document for the committee or subcommittee. And if a
report is just a working document that provides the committee’s effort to try
and update the status and just leave it at that, you know, it still needs to be
looked at. I’m not suggesting otherwise because there may be things there that
raise some flags or concerns. But it seems to me as a working document, I think
that’s where you were going, Marjorie, too, that it ought to be able to go
through fairly quickly. And that was, I think, Paul’s concern appropriately and
yours.

DR. CARR: I think, too, that if there are concerns or it turns out it’s a
little bit more difficult and at the subcommittee we can always just defer it
and bring it in September to get a final sign off. So –

DR. COHN: So we’re back to that motion. Are you comfortable with the process
discussed? Okay. Justine. Is there a second for that?

(Seconded)

DR. COHN: Okay. Further discussion? Okay, all in favor? Opposed?
Obstentions?

(Motion was adopted.)

DR. COHN: Okay.

MS. GREENBERG: But let’s wish Andrew a very happy graduation.

(Applause)

MS. GREENBERG: I mean I just have to say that it kind of – I don’t
know, I feel weepy almost. But it does show how much of a family we are because
when I first met Justine, he was applying to college, and right, my son had
gone to Cornell. And so I had talked it up. And I hope it’s been a good
experience for him.

DR. CARR: You didn’t talk about the drive.

(Laughter)

MS. GREENBERG: I told you about the weather. But anyway.

DR. STEINWACHS: So Marjorie, can the committee claim credit for his college
education and graduation? Is this another positive outcome of NCVHS.

DR. COHN: Okay. Well, with that, I’m going to turn it over to Harry for sort
of working with the subcommittees about the discussions.

MR. REYNOLDS: Yes, yesterday we went through a presentation trying to look
forward because I think as all of us know, other than the two full committee
meetings for the end of the year, there aren’t any hearings scheduled, I don’t
believe yet which is great.

And so I think that – so as each group broke out, we talked about some
kind of a framework, and I sat through a couple of them. So I know that
everybody sure hasn’t completed the framework and hasn’t gone through all the
effort. But I’d like to just go round one committee at a time and have
everybody update what they’re doing and especially if you will note anything
that you feel is of a cross-cutting nature and make sure that you as the chairs
or co-chairs of that committee explain why you think it’s cross-cutting and
what you might want the other subcommittee co-chairs to consider being a part
of it if that’s what you’re asking for.

So it’s one thing to just say it is cross-cutting and then walk away, or
it’s another to say it’s cross-cutting and here’s why and here’s what we’d like
somebody to think about doing for us. SO with that, why don’t we start first
with standards and Judy and Jeff.

MR. BLAIR: Judy and I would like to submit this in a very humble manner.
Humility becomes all of us, doesn’t it.

MR. REYNOLDS: As long as it’s quick, it can be humble. It can be aggressive.
It could be whatever it needs to be.

MR. BLAIR: First of all, there’s three major focus areas. The first one is
to pursue ways to improve implementation of standards, HIT standards in medical
practice, especially small medical practices.

The second is move forward with the 5010 and the ICD-10. And the third is to
look at the quote overall strategy for healthcare information standards, a lot
of the evolution.

Now Judy and I, we didn’t discuss this with our whole subcommittee. So I’ll
have to list this as a candidate recommendation, and that is that the one
phrase that I think Harold suggested that we all come up with. So this is our
candidate phrase and that the standards subcommittee is an enabler of health
information policies and processes. So that’s our candidate phrase.

And then the last item that I might mention is Judy and I expect to begin to
speak within this next week or so to wind up discussing the agenda for our
first subcommittee meeting and what the appropriate dates would be. Judy, do
you have anything else to add?

DR. WARREN: No. I think that Jeff’s pretty well cleared it and covered what
we talked about. One of the things that has been very evident and Harry brought
this up as we’re seeing the NPI begin to roll out. We do anticipate some
problems coming up next week. And what we realize is the same implementation
issues have come up when we looked at ePrescribing. They came up with HIPAA. We
anticipate some of the same patterns again showing up with NPI.

And so what we wanted to do was to really begin to harvest what are lessons
learned in those as well as what positive lessons, but what are the negative
lessons, what should we stay away from and things like that. So that’s kind of
where we’re going to go.

MR. REYNOLDS: Any questions or comments?

MS. GREENBERG: So are you thinking of holding a meeting before the September
meeting?

MR. BLAIR: We were thinking of conferring with the executive director to
determine what the budget is to see what our options are.

MS. GREENBERG: Well, I mean I need to know your needs, you know, and then
we’ll look at the budget. But the more – it would be really helpful, I
mean, we need to know particularly up through the end of the fiscal year which
is September 30^th if people are wanting to schedule meetings.

DR. WARREN: We talked about that briefly, and we really felt that Jeff and I
needed to talk with Denise about timing. We would like to have a meeting. It
could be this summer. It could be appended on to our September meeting. We
don’t know the details of that yet.

MS. GREENBERG: Okay.

DR. WARREN: But we should after our conference call soon.

MS. GREENBERG: Okay. Good.

MR. BLAIR: Yes, and Harry, we’re really glad that you’re still around
because the leadership you provided and the focus on the standards, formerly
standards and security subcommittee is something we continue to draw upon.

MR. REYNOLDS: Thank you. Any questions from anyone? Yes, Carol.

MS. MCCALL: Were there particular cross-cutting issues?

MR. BLAIR: We didn’t get to it.

DR. WARREN: We didn’t get that far.

MR. BLAIR: But we stayed on the straight and narrow.

MR. REYNOLDS: Okay, privacy and security.

MR. ROTHSTEIN: John and Leslie will report.

(Laughter)

DR. HOUSTON: Mark’s taking an early leave. We already obviously spoke about
publishing those prior letters. And really, in terms of the work plan, we had a
list of about 14 separate topics that we tried to work through this morning,
and I think – not through eliminating topics but rather consolidating,
we’re down to about 7 topics that frankly we need to do a deep dive on and pull
the subcommittee together so that we can try to prioritize, and we’re going to
do a conference call here shortly once we provide some additional detail on
each topic area and try to get a sense of priorities and the like.

So it’s a little – we don’t have the work plan yet, don’t know quite
what our agenda’s going to be yet. But as I said, we’re at seven topics, and I
don’t know if we want to describe each of the seven right now or we just want
to say that we’re working on it.

MR. REYNOLDS: Well, I think it would be good to at least mention them, at
least mention what they are.

DR. FRANCIS: It’s fair to say maybe you’ve got the list. But it’s fair to
say some of them would be new questions, and some of them are very related to
our prior recommendations or to what’s been going on in some of the other
subcommittees, for example, the Medical Home.

DR. HOUSTON: Right. And I can – and again, I think some of them will
cross cut. Right now the sort of the short list is privacy and information
practices issues related to voluntary web-based data aggregators including PHR
vendors. Uses of PHI for disease surveillance. Disclosure of sensitive health
information for non-healthcare uses including relationship with contextual
access criteria. What does that mean, Mark? You’re the one who described that.
You’re not getting off the hook early.

MR. ROTHSTEIN: Well, in our 2006 letter, we recommended that the Secretary
undertake research and development so that limited disclosures can be made to
third parties other than healthcare entities pursuant to an authorization so
that when a life insurance company, for example, has you sign an authorization
to release your health records, things related to your mortality risk and not
sensitive information that has no bearing on mortality and that would be
applied in all different context. So that’s –

DR. HOUSTON: The next topic is a follow up to our sensitive information
letter. Looking at there were a number of recommendations including things such
as categories of sensitive information and establishing what they would be.

Another topic area would be as a follow up to our ’06 letter regarding
confidentiality and privacy issues associated with NHIN including probably most
notably the whole idea of opt in versus opt out. So there were a number of
other recommendations that I think Harry had put on the list that he thought
were worthy of additional review by the privacy and security subcommittee.

A separate topic, consideration of the effectiveness of business associate
agreements with an eye towards developing best practices and other practical
aids for covered entities with regards to the use of the associate agreements.

MR. REYNOLDS: And if you remember, that is back to Carol, your earlier
question, that is cross-cutting. That’s about the whole secondary uses, other
uses of data. That was a key item out of there.

DR. HOUSTON: And then the last topic is sort of amalgram of a bunch of
things. But it’s really, I guess, at the very high level doing an assessment,
making recommendations regarding the governance associated with privacy and
security within NHIN with the governance models and what needs to be in place
to support that at this point. It was something that Kolodner spoke a little
bit about yesterday, and they’re very much open towards us getting involved in
that.

DR. FRANCIS: And as far as we could tell on the security issues and opt-in,
opt-out and whether that’s at a kind of either I’m all in or I’m all out or
whether that’s at a level of authorization of particular records going to the
sensitive information question, those are both ones that are potentially cross
cutting depending on whether anybody decides to do anything about Medical Home.

MR. REYNOLDS: Any plans on having a hearing this year?

DR. HOUSTON: I think it’s too early to tell.

DR. FRANCIS: Await a conference call. The other, when we talked about
surveillance, there’s the public health surveillance question. There’s also
– this is all up on secondary uses. There was also some discussion of
disease registries both at the individual practice level and at other levels in
Medical Home hearing discussion, and that’s obviously another secondary use
that we’re following up.

DR. HOUSTON: I think if we decide to chew off the last one that I described
in particular, the governance related –

MR. REYNOLDS: What?

DR. HOUSTON: The last topic area, the privacy and security governance
associated with NHIN, I think that is very important and is really timely for
us to do, it’s going to take a fair amount of testimony. So if we think that’s
something that we really need to delve into, it’s going to take a fair amount
of effort. So FYI.

MR. REYNOLDS: Okay. Any questions? Okay. Let’s move to populations.

DR. STEINWACHS: Well, the population group thought maybe we ought to change
our name to population health. That was one little product to think about. I’m
trying to preempt because the quality group’s also going to come through with a
future name. I think Paul’s sitting there ready to go. Give him another step. I
feel much better. We talked about five different areas, and Harry tried to put
it into your framework of vision, short term and follow up, and certainly these
aren’t settled. These were discussions of how to move ahead on them.

Let me just go through them and give you a quick sense of where we are. On
the Medical Home, Susan told us that we’re likely to get a summary that’s
thematic within about a month. And so that will provide, I think, what will be
very useful both for the subcommittees because it has cross-cutting areas, but
also for the executive subcommittee when it retreats to try to think about how
to build on that hearing and where do we go from there in the different areas.

I think and, you know, I’ll invite other members to respond, particularly
Larry, that in the visionary area, you know, the fundamental idea behind that
Medical Home is a system redesign. And so some talk about it is reinvigorating
primary care. Some see it as a way to try and deliver chronic disease
management. And so the Medical Home is not yet a precise thing, but it’s that
idea.

And I think on the visionary side, I think it would be helpful to people if
we could lay out the underpinnings of that which is the primary care model,
Wagner and other chronic disease model and have a framework that talks about
where this fits in. And also the visionary part, it would seem to me, is the
data model, a data model that supports essentially primary care, chronic
disease management and a kind of framework. It could be a Medical Home.

There’s some people who – and I would agree very much, think it ought
to be a health home and not a Medical Home, and that’s important.

So we’re going to have a conference call once we have the report and talk
about moving next stages on this. Larry, you sure? Okay.

A second area and Ed Sondik was with us is vital statistics, and I was going
to ask Garland if he could say a couple words about the state of the vital
statistics because our role, it seems, is more short term right now is along
with the BSC, the Board of Scientific Council and there’s also the National
Academy of Sciences statistics for health – I’m not sure of the name of
the board. It’s something to do with statistics.

MS. GREENBERG: The Committee on National Statistics.

DR. STEINWACHS: The Committee on National Statistics that NCHS will be
looking for advice and response to options as I understand it. Garland, could
you say a couple words because I think it would help the committee to
understand.

MR. LAND: Because of budgetary constraints, the National Center’s
considering cutting back on what is collected from vital statistics either data
elements or even data sets. And that has to be decided within the next six
months basically because contracts have to go out to the states by January.

So we’re looking at the possibility of the subcommittee being involved in,
along with these other two bodies that was mentioned, looking at the proposals
and providing advice on what cuts should be made in terms of data elements or
data sets that would be available nationally.

DR. STEINWACHS: And so what I think is an open question is how best for us
to respond to that, and whether or not having some people in a hearing might be
helpful in trying to get feedback and providing guidance, or whether or not
it’s much more informal guidance that just is given. So I look to the executive
committee and others on that.

Data linkages, Marjorie?

MS. GREENBERG: Excuse me. Well, I think there were two issues that –

DR. STEINWACHS: Okay.

MS. GREENBERG: There was the short term crisis, but the recognition that
this is getting old and that this has been a continuing crisis, and that there
really, to borrow the word that’s been going around the last few days, there
maybe needs to be a transformation in the way that the federal government
thinks in terms of supporting the vital statistics program to a sustainable
model that doesn’t, as the Board of Scientific Council puts it, make death by a
thousand cuts.

So I think –

DR. STEINWACHS: How many cuts are we into now?

MS. GREENBERG: Enough. I heard Ed Sondik say yes, I need your help and then
needs the board’s help in maybe making some very difficult decisions or
choices, none of which will be good. But then I really need your help in the
longer term in working with the committee on national statistics and data
console. We talked about a data strategy for HHS that doesn’t really exist. So
those groups working together on a longer term vision of how can we support
this vital – not meaning to make a pun, data source for population health.

DR. STEINWACHS: I was going to wrap that in the 21^st century
idea. But –

MS. GREENBERG: Okay.

DR. STEINWACHS: Okay. Did you – okay. On data linkages, when I went to
the BSC meeting the other day, there a very nice presentation that talked about
progress that have been made in some of the areas where we had written a letter
and moving ahead, trying to make data more accessible that’s linked because
once it’s linked it becomes then much more difficult to protect privacy.

And so the plan has been and still is on our agenda to think about having
what may be a half day or one day hearing that would be an effort to update
where things are both relative to our recommendations and some of the other
concerns that were raised at that time. And in part, you know, Gene can comment
on it now and also in the future. But we were looking for some ways to try and
continue to maintain visibility on the idea that there’s a huge investment
that’s been made in dollars and sense in collecting health data as well as the
goodwill of the American people, and we just aren’t maximizing utility of it
because we still have barriers, linking barriers to access of data that could
really leverage our understanding of health and the dynamics.

And so this was our effort to try and maintain visibility by saying maybe
every couple years holding a hearing to update where we are to apprise and
identify are there new issues as well as have we resolved some. Gene, do you
want to – okay. I think people may be aware indirectly that we have been
pursuing preparedness and issues of surge capacity. We decided not to move the
letter ahead on this. But issues of preparedness certainly are very much on the
public health scene so that that may too come into as we talk about what’s
going to happen with the updating of the vision which goes into the
60^th anniversary.

Well, you know, it’s all Simon’s fault. Simon started talking about years
I’ve had, and he’s already gotten me up to 90 here. So let me just say a little
bit about our discussion on the 21^st century and it certainly ties
into a discussion more broadly.

But I put in that I thought it was a great idea. Marybeth mentioned
particularly this idea that when you say is there really an HHS data strategy
in health, and you could open it more broadly to the government, that that’s
not very well defined. And so there’s certainly a data council that works very
hard at trying to address issues and trying to coordinate, but not really a
strategy.

And so it seemed to me that one kind of next step, and we said, well, the
21^st century update might have two things. One would be what kind of
progress have we made on the prior recommendations and, you know, that doesn’t
really take a lot of effort. I don’t know. Marjorie would know better than I.

But the other was to pick one or two areas that were targeted to try and
make them more specific because right now the 21^st century vision is
very general. And I think out of the quality group there ought to be some
suggestions on this, too. So in my mind one suggestion was this idea of a HHS
data strategy. How do you develop a strategy that makes it possible to move
ahead on the data needs to put together health statistics for the
21^st century in a more specific way. That would very much bring in
vital statistics.

And I think part of the problem that we’re having maybe with the states and
elsewhere is that when we deal with each data source as a silo, it doesn’t talk
to the synergism, and it doesn’t talk to the state and local needs for not just
those data but data that get linked and get back to them in ways that are
helpful to them.

And so it could be, it seems to me, an interesting kind of effort to say
let’s take this to the next step and be more specific about a data strategy. So
that was really the contribution in that area.

So we only talked about five areas. So we were much more limited than some
of the other committees.

MR. REYNOLDS: Simon.

DR. COHN: Well, you know, Don, I’m actually intrigued by the pieces that you
are talking about. I guess I’m – you know, maybe I might cut it up maybe a
little less finely, I guess, in some ways as I was listening. I mean, I am sort
of intrigued and maybe it’s only been because I’ve been sort of pushing NCHS
around a data – I mean, I really just think that there’s a need for some
transformation to go on, and I actually think data linkages may be part of it.

So I’m not sure if I see that as a separate bucket. It all sort of falls
into the sort of fresh look and is there some transformational thinking, be it
an HHS data strategy, a vital statistics data strategy, a you name it health
statistics data strategy which seems to me a little more powerful than what
we’ve talked about before.

I don’t know how you approach it. But I think it’s better – and some of
this stuff requires some high level thinking before you dig into each separate
piece.

DR. STEINWACHS: Yes, I would agree. And so, you know, in the framework that
Harry put forth was very useful, there were only two sort of visionary areas.
One was around this 21^st century and where we try and move that and
so the HHS data strategy. And the other was around a system transformation in
medical care or in health care, health owned primary care.

So those were the two visionary. The other things were more on the short
term of follow up. And so I think you’re right. I mean, a better presentation
of this would have integrated this. And at the same time I also am concerned
like you is that if you can’t figure out what the next step, sometimes parsing
it down into pieces and then rolling it back up again. So I think we are
between – there are pieces, but those pieces do need to come together in a
bigger vision.

MS. GREENBERG: Since Jim is not able to be here, we got an email from him.
But he was having an obligatory meeting on the AHIC successor and, you know,
hoped he’d get over here. But as we’ve all learned, it’s hard to be two places
at once. But he’s of course the executive secretary of the Data Council.

And I’m sort of hearing some of the things, maybe it’s from working all
these years with him, that he might say, and maybe there aren’t the things he’d
say at all because I don’t know.

But I think, you know, there are ways that we can approach this without sort
of, you know, saying to the Data Council you haven’t come up with a HHS data
strategy, so we’re going to do it. I mean there are reasons obviously why that
hasn’t worked, and I think a lot of them actually are sort of in that
21^st century vision for vital statistics. We have a very distributed
system, and that’s, you know, created some of these problems. It creates
opportunities, but it also creates problem.

So we’d certainly want to talk with Jim about, you know, going into that
direction. Also I can hear him saying – again, he wouldn’t, but that as
we’re approaching this transition with a new administration, et cetera, we
don’t want to get too far ahead of them.

DR. STEINWACHS: But you’d already said to move it. You were going to move it
into – this is 21^st century link.

MS. GREENBERG: Well, just the HHS data strategy.

DR. STEINWACHS: I was linking that to the 21^st century.

MS. GREENBERG: Yes, linking it. But I think there are ways that we can move
forward if it’s in the context of sort of updating and revisiting some of the
things we’ve already been working on. I can’t see us sitting around waiting for
two years to see how the new administration shakes out.

So just some words of caution about, you know, how we sort of frame this.

MR. REYNOLDS: Any plans for hearings this year?

DR. STEINWACHS: Not yet. So I think our hope was that by the time you hold
the executive committee retreat, we were going to have telephone calls on
several of these areas to try to move it ahead, the Medical Home and Garland’s
going to be tracking the vital stats and where we are. And so I saw coming
together, and we very well want to have. And Larry?

DR. GREEN: I’d just like the space holder there, Harry. There’s a
probability. I don’t know how close to one that probability is. But after we
get systematic analysis and sort this out and look at the cross-cutting nature,
I would predict there’s going to be a need for primary data collection of that,
an issue or two that’s probably going to lead to us needing to do a hearing.

MR. REYNOLDS: Any questions from anybody else? Thank you. All right, quality
and – oh, Gene?

DR. STEUERLE: Just one quick note. I’d just like to compliment Don as well.
I think he’s taken his population subcommittee and really built it up with an
agenda that fits in with the full committee. And I think it’s been an
extraordinary effort and time consuming, and I’d just like to compliment him on
what I think has been a fabulous job.

DR. STEINWACHS: Thank you.

MR. REYNOLDS: Paul, we sent you off as quality and ata.

DR. TANG: Yes.

MR. REYNOLDS: Are you returning as that, do you have some other –

DR. TANG: This may be viewed as somewhat disruptive. But I think it would be
forward looking. So we began sort of recounting the virtues and comfort of
Medical Home concept that we heard over the prior two days. But we evolved into
some discomfort with that, perhaps if only in name only, but I think it goes
deeper than that, that the Medical Home concept may be married or tethered by a
medical model of providing healthcare.

And so that, we’ve sort of further reexplored whether we do have an emperor
with no clothes and degenerated into re-examining whether we really have
quality at all, whether we should be focusing on quality and data.

So we sort of –

MR. REYNOLDS: Simon, you remember you still are involved. I’m going to need
you and Mark’s counsel big time. You may continue, Paul.

DR. TANG: So as a temporary placeholder, but I think we’ll need to go
through the next step that I’m going to discuss. So is it just data or is it
information, and is it quality the way we think of? Again, it’s tethered to
delivery of health care by healthcare professionals.

But as a temporary placeholder, we came up with quality information and data
which is split, the subcommittee on quality information and data. But really we
wanted to go back –

MS. MCCALL: We’re going to make shirts.

DR. TANG: Pardon me?

MS. MCCALL: We’re going to have shirts, T-shirts.

MR. REYNOLDS: Yes, continuing your explanation since we haven’t accepted
this yet.

DR. TANG: Well, there was a lot of wisdom in the group that put together the
three Ps document, the information for health because the population, the
person and the provider and the intersection in the VIN diagrams, that concept
actually is very powerful and very timeless. But the world has moved on even in
the five to seven years when the report was produced. So we have a new
contemporary wired society with Web 2.0 and the Google search that wasn’t there
and the PHR and the Microsoft. It’s just a whole new world.

And so we thought it would be useful to update the concept, maybe
contextualize the really timeless concepts in the three Ps to the new wired
world and come up with a new vision that describes is the Medical Home really a
physical place and a physical Marcus Welby, or is it really they’re looking for
access to the data, knowledge and tools to address health and healthcare
matters.

And I think there may be a new way of describing it that gives us the
ability a vision to move forward. That, of course, is very cross cutting. It
involves the data systems. It involves the privacy to protect it. It involves
the population extracts. It’s a new world and a cross-cutting one.

So we thought the way we would approach that is to sort of have conference
calls to just get up to speed on what we mean and lead up to what we thought
was a requirement for a face-to-face meeting or a workshop that would really
hammer these ideas out and be the agenda for how we move forward. And we would,
of course, present back to this committee on that new world order and then go
from there in terms of what explorations do we have to – what other
primary data do we need to gather in order to flesh it out. And that seemed
fitting with the cross-cutting paradigm that you tried to produce. And that’s
sort of where we are.

So as far as resources, it would be at least this one face-to-face and
plus/minus any other hearings that arise out of that.

MR. REYNOLDS: Questions? Leslie?

DR. FRANCIS: If, for example, you’re going to start focusing on the brave
new world of health care for the web and everything from GoogleMed to whatever,
then our first privacy, our very first issue which is how to think about
privacy or all of those burgeoning new forms is just much more important and
should be the top of our agenda in certain kinds of ways. So we need to, you
know, follow up with you.

MR. REYNOLDS: Carol?

MS. MCCALL: Just to add some comments to what Paul was laying out, Marjorie
had brought up a concept of thinking about not just singular events, but kind
of thinking of things in a series, how one thing can build off another and lead
to another.

And so there really is a nice flow to this, and it actually starts with some
of the hearings around Medical Home and some of the – two things from
that, some of the delightful concepts that have come out, but also some of the
paradigms that those concepts challenge.

And so it’s unclear to me actually whether or not we will be involved in
creating a report out of that. But there will be a report obviously. And then
to use those to provoke the updates, what does 21^st century vision
look like in a wired world with paradigm shifts, and that that could then
suggest, you know, hearings. It could suggest coming out of that are a whole
bunch of different needs that if you look at the world through a new lens that
is really unprecedented in some respects that new needs will come out that
could suggest a variety of topics.

And that if we were really good at our timing, that the timing for those
might be well placed once the new administration were in fact in place, kind of
settled and ready to take some of the pith that we would hopefully bring to
those concepts.

MR. REYNOLDS: Judy?

DR. WARREN: Well, I guess the new name for me makes it even more imperative
that there be a definition of what the name means.

MS. GREENBERG: Other than calamari?

DR. WARREN: Yes, other than calamari and it looks cool on a T-shirt. The
reason I say that is if you look at standards or the standards that our
committee has been looking at, it’s all about data. And so to have another
subcommittee named data, you kind of wonder what does standards do.

So I think we need to look at that. So I go back to Carol’s suggestion of we
all need a phrase or a one-sentence definition or that we might want to look at
the four names together and figure out how to parse out the tasks that we have
with those four names.

DR. COHN: Harry, can I make a comment?

MR. REYNOLDS: Yes sir, you sure can.

DR. COHN: You know, whenever subcommittees or work groups change names, and
I’m looking at all of you at this point, it becomes a wonderful opportunity,
and once again I’m like Paul who’s a lumberite. I tend to be a little bit of a
splinter on this one. But I think where you start is revising and updating your
charge. And then from there, you go to your one-sentence line, not the other
way around.

And I think what I’m hearing is since everybody’s got a new name, some
people are into seafood, other people are into other things, that there really
is an occasion for all the subcommittees to really take a look at your charges
which I know have not been updated for a number of years, and it sounds like an
executive subcommittee conversation.

MR. REYNOLDS: Yes, and I think it would be great if – I’m going to talk
about, well, I’ll talk about that when we get to the executive subcommittee.
Please continue, Paul. Are there any other questions for Paul?

DR. TANG: Well, you know, the whole cross-cutting approach may actually mean
that the work – that the hearings are cross cutting in the sense of it’s
silly for privacy to have their hearing on number one. So in a sense, we might
bring some of these disruptors to the table and have different perspectives
explored at the same time.

What we’ve got to figure, it’s sort of like the charge first. Let’s get the
vision first and then figure out how do we go ascertain what it takes to get to
the vision and what are either the obstacles or the watch its.

MR. REYNOLDS: Marjorie?

MS. GREENBERG: Well, the good news I’m hearing despite the fact that we’re
the most productive committee in modern times or whatever is that I don’t
really hear any real action items for September. So maybe I’m wrong on that. I
mean some things could come out. So we could spend a fair amount of the
September meeting actually a certain chunk of it around what comes out of the
summer’s discussion, the executive subcommittee, et cetera which is, I mean,
because once we’re talking about cross-cutting hearings, you start thinking
about everybody almost being there.

MR. REYNOLDS: Larry?

DR. GREEN: Harry, I just wanted to observe that yesterday you said this
sentence. There are many people out there working one thing. We can be
inclusive and pull things together and explain in advance the whole. For me,
that’s sort of become the mantra, and I just felt that sort of crystallized.
And what Paul just recommended and what Judy’s response to it was how Leslie
stepped in.

We’re very close to being able to actually fill that space. And I’m inspired
by that space and enthusiastic about it. And then I’d like to make one other
comment. Anyone who’s looking for an acronym, I think that I would like to
volunteer Carol. She will create the acronyms for us.

MR. REYNOLDS: John?

DR. HOUSTON: Just briefly, if we’re going to be updating charters which I
think is a valuable exercise in light of all of this, I just went through
quickly through the website. And I don’t see anything online any documents that
are in a form that we can edit.

MS. GREENBERG: Oh, you mean you found the charters.

DR. HOUSTON: The charter’s there, but there’s no editable document.

MS. GREENBERG: Yes, well, we can deal with that.

DR. HOUSTON: Can we just forward that to all of us.

MS. GREENBERG: We’ll send you all your latest charters. Yes, the only thing
I would recommend is I hate to disagree with Simon on his last hour of being
the chair. But I mean I’ve been involved in writing and updating more charters
for this subcommittee than I want to remember. And it can be become a very
tedious wordsmithing whatever process.

I’d really think you might, you know, you can do it either way. But start
with that one or two sentences. What are you really trying to do here. Get some
agreement as to, you know, and it’s all a different way of looking at it. I
mean, obviously there is a lot of synergism, and it will be overlapped and
that’s okay. And particularly, we’ll try to organize meetings and all that to
accommodate it.

But once you get agreement in the executive subcommittee or around the whole
table as to Yes, that’s kind of the focus here and et cetera, then the charter
comes more easily.

I think also I believe in broad charters but specific work plans. So those
are just some advice from years of toiling. I wouldn’t want to see you spending
a lot of time on these charters.

DR. HOUSTON: Well, let’s patronize Simon until he leaves the room, and then
we’ll –

DR. COHN: If Justine were around, she’d agree with me, I’m sure.

MR. REYNOLDS: Well, she left you to proxy.

DR. COHN: But the good news is that you can seek the counsel of your new
incoming chair.

MR. REYNOLDS: Who has Simon’s number. Don’t let it bother you. No, I think
as we’ve talked this week at least the four years I’ve been here, when we first
came in, there was this vision of NHIN. There was the NHII. There was a lot of
things being discussed about what could happen.

Now there’s a lot of people trying to make the pieces of it happen. I mean,
you’ve got – there are more acronyms out there right now, picking up
standards, implementing things, having vendors get involved, things going on.
So this is not – what I feel is this is not signifying a change in the
committee. This is signifying that we push some stuff along, and we’ve got to
keep an eye on it and keep it going the right way.

But there’s that other void possibly out there again which is pulling it
together, and that’s where we started. I mean, if you look at the NHII, you
look at the 21^st century, you look at some of the things that have
gone along, look at privacy with what we’re talking about now versus what it
was I know when I first joined. There were discussions about whether or not
somebody would or wouldn’t answer to HIPAA. Now it’s talking about, you know,
dramatically different things.

So I think the exciting part is we could plan, and I think even if we
weren’t changing a lot of the committee, I think that it would be the exact
same discussion and the exact same subjects because we’re positioned at a point
to do that with the people around the table to deal with it.

So we’re going to planning an executive subcommittee retreat probably end of
July we’re working on right now. The point is that this is exact discussion
that we’ll need to bring forward. So I would like any of you as committees,
subcommittees that want continuous input from your groups, make sure you get a
conference call or whatever you need to do to make sure that you’re fleshing
out a little more what we did with the diagram.

And again, the only reason for the diagram yesterday is it makes it a whole
lot easier just to figure what we’re all doing and how we’re all thinking, and
hopefully it helps some of that. But I would like something so that we can
continue to – so if the committee is going to start doing things a little
bit differently, that will be even more important to have it down in some way
that we could easily talk about that rather than, you know, just sitting around
and saying, well, we’re going to look a little different, we’re going to act a
little different, and I think that would be key.

So I think that’s what we would focus on for July, and I’ll be working on
that with Marjorie and others to get that established. But good work, really
excited about it. As I say, I think we do have the subcommittees an we do have
the full committee and everything to probably tackle this problem a little
different than a lot of people out there and make you want to bounce out of bed
in the morning and make a difference with it. So that’s not a bad idea either
rather than just deal with the next individual thing.

So we can do both at the same time and make it go. So Simon, I think that
completes our discussion on that. We’d love any insight from you or Mark or
Gene or anybody before – we don’t get to get that on a regular basis about
what you heard today and I mean good, bad or indifferent. So we would love to
have that.

DR. COHN: Well, Mark, do you have any parting insights?

MR. ROTHSTEIN: Well, just that it sounds very exciting. I mean, there’s
never a shortage of work for this committee. And the short term task for you is
to choose wisely where you’re going to invest your human capital in the short
term until the new administration comes along and comes up with a new agenda
that you’re going to have to respond to and help direct and HIT. Gene?

DR. STEUERLE: Well, actually I was going to say the same thing as Mark
yesterday, and I want to say the same thing as he did today. I think that
there’s a tremendous amount of change that’s going to take place next year for
a whole variety of reasons. Some of it’s going to be budget driven. Some of
it’s going to be driven by all of the candidates talk about what they’ll try to
do in expanding health coverage to actually in some ways conflict with each
other. But there’s going to be a tremendous demand for data.

I didn’t send it around. CBR recently put out a study on some cost effects
of health information technology which I’ll try to send around because I think
the members of the committee might want to read that. It’s got like 60 or 70
ideas of things that might be done or not done. They’re not that sanguine about
saving on cost, by the way, under the current regime. But anyway there’s a lot
of outside pressures that have an impact on what statistics, what quality
issues have to deal with privacy issues. I mean, all those things interact with
some very big changes going on.

So I, like Mark, I encourage you to think about keeping some slack in your
system to be able to deal with these what I think are going to be fairly big
and exciting and difficult issues.

DR. COHN: And I guess I would add in that I think it’s an exciting set of
issues that the committee has to consider going forward. I was sort of
impressed that health care reform and data needs didn’t really bubble to the
surface explicitly except that as one talks about transforming health
statistics, that of course is implicit in any of those conversations.

But I think what we’ve noticed over the last year and once again I find that
health data and health statistics issue is really turning into sort of a
critical issue going forward. It really does deserve a lot of the committee’s
attention. You know, we spend a lot of our time dealing with the
infrastructure. The NHIN work, the NHII work. But we’re really sort of a
pinpoint, and we could have talked about this three, four, five years ago. But
I think everybody’s beginning to feel the pain of the cost of data, the needs
for data, the fact that some of it is just locked up and can’t be mobilized.
And people are trying to make intelligent decisions.

I mean, some of the cost trends that we’re seeing as I’m sure Gene would
describe are not sustainable. And clearly one of the purposes of having data is
so that the government can make intelligent policy knowing that inevitably
there’s going to have to be something done in the future. So I think it is a
good time for the committee to be thinking about this.

But anyway, that’s work for the executive subcommittee to do. Now I guess
I’m going to suggest we spend a couple minutes talking about the
60^th anniversary.

MS. JACKSON: Can I mention one thing?

DR. COHN: Oh, please.

MS. JACKSON: The other item on the agenda, just an alert. We put down the
communication and report dissemination just so you would know also we’ll do an
update in the executive subcommittee. But in addition to the print media, to
updating the website, to help reflect the ongoing excitement of things that are
going on in committee, Katherine Jones is our lead team person on that who’s
been working since the fall on getting this thing more accessible and getting
reports up there and easier to catch.

We’ve been tapping into Mary Jones, Susan Kanaan and also getting Justine’s
input so that by the Executive Subcommittee meeting we’ll have some
information, maybe even before, just to show you to kind of keep this revved up
and exciting and ready to go and transformed.

DR. COHN: Maybe I turn it over to Marjorie to talk about her views on the
60^th anniversary.

Agenda Item: NCVHS 60^th Anniversary
Celebration

MS. GREENBERG: Okay, well, I must say my views have evolved over the several
days here. I think Carol gave a little preview for evolving as recently as, you
know, an hour or two ago.

All along, we have been thinking about an event. We had a 45^th
anniversary event. We had a 50^th anniversary event. And now we’re
– we skipped the 55, and we were thinking about a 60^th
anniversary event. Okay.

And then various projects and documents, whatever, that we might want to
roll out at that. Well, I was still thinking about a culminating event probably
at the National Academy of Sciences where the 50^th was, and it
turned out it was a nice venue for it. Also and Jim Scanlon who facilitated
that because of a number of relationships that the department has with the
Academy has assured us that he thinks that can be done. And I think that
endpoint probably what we’re thinking now that I’m recommending is June 2010
but for a variety of reasons. I mean, the committee, we do think, was
established in 1949.

DR. STEINWACHS: But there is some controversy now.

MS. GREENBERG: As Don pointed out last night with the first chair from 1949
to 1956 being from Johns-Hopkins, Lowell Reid, a giant in the field. I think
there’s a major American Medical Association award, I think, in his name.

But in any event, but on the other hand, we had the 50^th in 2000.
So having it in 2010, ten years later, would make sense. But this morning the
idea started to percolate which I think resonated at least with folks in the
quality group who were there at the time of a series of events. This is leading
up to the culminating celebration. And this – you see groups doing that. I
mean, like the World Health Organization’s just observing its 60^th
anniversary and a number of different sort of events or documents or themes,
whatever, and CDC has done this, et cetera.

And I think the discussions over the last few days about having a few themes
to organize or work around to make it clearer to our current constituents and
to the new administration, et cetera, what we’re about, what we can do, what we
have been doing and how we’d like to contribute to future work and
synthesizing, being, you know, one of the groups. I mean we don’t want to get
overly heady about our role. But certainly in this era of national health
information, we certainly can think of ourselves as one of the leading groups,
I think, to kind of bring it together and show how these things can fit
together and how they aren’t really fitting together now, sort of some of what
Paul said could be very compatible with trying to do a series of things or have
a series of documents that all kind of, you know, culminate in the
60^th. And then, of course, you go on and do more.

So that’s my latest thinking on that with this. As I said, the culminating
event being in June 2010. I mean there’s some things that are already planned
and going on in the next year. And in a way, that would also make it because
2009 is the year, then it’s like a year long kind of celebration or whatever,
consolidation, et cetera.

So that’s one thought. And also from the point of view of documents or
projects, I’ve been talking a bit with Susan Kanaan. We have the 50-year
history which is I think a very solid document. And turning that into to a
60-year history is less appealing to me as I think about it because I think,
you know, a 50-year history makes a lot of sense. And it really is a very I
think a very good document.

So we’re talking about – we started talking about a few things. One is
a ten-year the first decade of the 21^st century which is when all of
this explosion of HIT and everything you’ve been talking about has come on to
the scene and will only continue to be important.

So that rather than looking like – also I think the idea of a 60-year
history, you know, will drag people down just the thought of it. But the
thought of this is the first decade of the 21^st century. This is
what the committee has been doing and involved in and also how it fits into
this whole new landscape, I think, could be really kind of cool.

And then we also talked about, Susan and I, about also having a document in
which she really interviews or talks with the living chairs, past chairs who
basically the last five – well, of course, the incumbent chair, Simon, Don
Dampner, John Lumpkin, Ron Blankenbacher and Carl White whom we just went down
and met with, Debbie and I, a few weeks ago with Bob Graham, no, Bob Phillips
from the Robert Graham Center, very confusing. He was here with Michael
Klinkman in November talking about the conference on primary care
classification, and Carl White is just such a giant in our mutual fields
whether it be epidemiology, population health, primary care, you name it, and
is now about 93 but still very sharp and very committee to the work of this
– I mean, very engaged still with the work of the committee. He was
listening on the Internet at our suggestion when we visited him, and he
followed up and listened on the Internet to the Medical Home hearing. And he
has said that with all of the committees and work that he has done over his
lifetime and his career, he prizes the work that he did with this national
committee and the National Center for Health Statistics — they were much more
closely linked then, but among the highest.

So it would be wonderful to have him here, and there’s a possibility that he
could be for this big event. But also I think some living history with the
chairs as including him as to what an advisement committee can do, can’t do,
whatever the decade was that the chair was involved, you know, what transpired
during that time in relationship to the national committee’s work and how this
has all evolved, I think, would be really a great thing to do as well.

So and then we’ve got the revisiting of these two visions, the vision for
the national health information infrastructure and the vision for the
21^st century health statistics. And again, I think, not trying to
roll this all up into one thing but as kind of a series of connected things in
the next, well, really two years because this is June 2008 or May 2008. This
is, you know, even though it was my recommendation to have this meeting in May,
it has totally confused me, I have to tell you. I’m so much that the national
committee always meets in June that I have been confused. No, it was my
suggestion. But anyway, I don’t know if that happened to any of the rest of
you.

So these are some of our thoughts that I think we would need to flesh out at
the executive subcommittee retreat which is why Harry and I are talking about.
I think that’s really important to do. And you know, I’d like to engage Dan
Friedman to some degree. We’ve already talked with him. Don Dampner, if he’s
available for those two visions. They were the visionaries behind them. But I
think, you know, we wouldn’t be tied to their visions. So those are my
thoughts. Jeff?

MR. BLAIR: Marjorie and Harry, I think those are good ideas. As I was listening
to you articulate them with enthusiasm and pride, I thought of a couple other
things that might be compatible for consideration.

One of the – I look at the accomplishments of the NCVHS, and they are
in terms of thought leadership, in terms of influencing public health
information policy. And admittedly I’ve always had the subcommittee on
standards as my focus. It’s broader than the perspective that I normally
articulate. But I think you can carry it to those things.

And then I step back and I wind up saying why is it that so many people say
that this is one of, if not, the most respected advisory committee in HHS. And
there’s, I think, three reasons why. So I thought maybe if we added the
dimensions of these three reasons to show the list of tremendous things that
we’ve influenced, and the first is steadfast support for NCHS. That’s an
enabler. It’s a critical enabler in both the staff and the funding to continue
the hearing. It’s not cheap. It’s not cheap to support NCVHS. The funding has
been there, maybe not as much as we always wanted. But we’ve had steady
financial support and steady staff support and support from within HHS all of
the departments. I think that we ought to recognize that.

The second area that has contributed to the success that is so engrained in
us we often take it for granted, but it’s the process. We really have a very
deliberative process that produces quality work, quality work in terms of
thought leadership, and we know what that is because we follow it. And I think
that that’s the second major ingredient.

The third ingredient, although we mention it often, I’ve love to see it
mentioned in a way that folks who may have never heard of NCVHS or are just
barely familiar with it understand the history of the fantastically – I’m
groping for words here. But you mentioned Carl White, but the list go so much
broader than Carl White. I just look upon, again the viewpoint that I had, all
of the folks that have been on the subcommittee on standards and security over
the 11 years that I have been here, these are all leaders in healthcare
informatics. It just awesome both in terms of what they did before they were
appointed, when they were appointed and after they were appointed.

And I bet you that you’d have the same impact with all of the other members
that have served on the other subcommittees as well. And I think the picture
that would be painted if we go ahead and do this is here’s what we’ve produced,
here’s the impact of what we’ve produced, and here’s the three major
ingredients as to why we were able to do that over the years. I think it would
just be a very, very, a word I’ve started to borrow from Simon, very compelling
story.

MS. GREENBERG: Thank you, Jeff. And in fact, I think that’s very much in
tune with kind of –- I mean, I appreciate what your kind words about the
department and NCHS and, you know, all of that, and I certainly agree with you
about the history of membership. Well, what did, Blackford, you said to me
something yesterday about all your heroes had been on the committee.

DR. MIDLETON: Yes. Yes, Jeff, listening to you and hearing this commentary,
you know, I think it’s time for NCVHS the movie.

(Laughter)

MS. GREENBERG: Oh, the movie. I love it.

DR. MIDDLETON: Sixty years. We’ll get Spielberg and Harrison Ford, you know,
or some way.

MS. GREENBERG: Right. We tried to get them on the committee, you know, but
–

DR. MIDDLETON: But actually sort of a modern media presentation of this
history could be extraordinary and serve well in the archive.

MS. GREENBERG: And I think that’s sort of what Susan and I – I don’t
now about the modern media, though, you know, that – love it. But we were
talking about last night, but in having these maybe interviews with the chairs
and maybe some of the executive secretaries as well as selected members,
whatever, but you could maybe try to crystallize, I think, maybe we don’t even
need to. All we need to talk to is Jeff because he crystallized it well, I
think. But it’s sort of this – what kind of makes a group like this tick,
what works, what doesn’t work. And I mean, we’ve had our down times. We’ve had
our successes. We’ve had things that we thought were great and nobody listened,
and then we’ve had things that took off beyond our wildest expectations but
sort of been there.

Certainly, I mean, again getting back to Carl White, being in legislation,
and he was responsible for getting this committee which started in ’49 into
legislation in 1974. And that really made a difference because once it was
linked into the NCHS reauthorization, then it was reauthorized with HIPAA,
whatever, once it was in legislation, it was much harder for a new
administration to come in which they do, of course, and say what are all these
advisory committees. They were set up by my predecessor. They cost a lot of
money. As the caring and feeding, as I’ve often said, of an advisory committee
is non-trivial and get rid of them and set up their own.

But it’s been harder to do that with the national committee. I think there’s
been less desire to do it now. But there have been more desire in the past
maybe. So I think just kind of that whole ideology or the ecosystem, whatever
the word I’m groping for it, but of an advisory committee is something that we
can celebrate as well.

And also the importance of having, you know, of the federal government and
the department recognizing the value and putting its money where its mouth is.
I have to say that I really give a lot of credit to Ed Sondik who as my
director who really has prompted groups to come in, and I appreciate that very
much. Not Jim being here, but that was a big milestone when we were able to
bring them in and some of their resources and support.

But, yes, so I think we want to celebrate all of that at the
60^th. But are you attracted to this idea, though of sort of a series
of maybe – I’m not talking about big parties, but a series of projects or
events or whatever all which we can hopefully kind of make thematic in a broad
way that would be celebrating really the 60^th, maybe starting now.

DR. CARR: Way back when the U.S. Bicentennial was, there was a bicentennial
special for everything. Well, this would be the ten-year special or that’s what
I’m sort of hearing that we’re going to be charged with thinking about how to
do, and it sounds like fun.

MS. GREENBERG: Well, I think we would want to talk about it at the executive
subcommittee, and anyone who wouldn’t be at the executive subcommittee or who
isn’t on the executive subcommittee who has ideas on this, please send them to
Harry and me. And we will obviously, even though that’s a good way to start it
off, I think we would obviously engage everybody. And I do think we could spend
some good time in September as well.

But it kind of frees us also from like what’s going to be one killer act
that’s been kind of weighing us down in a way so that we can have a series of
things but that fit under a bigger theme and have everybody feel like they’re a
part of it.

DR. COHN: Well, Marjorie, thank you. I think it’s an exciting vision, and
obviously the executive subcommittee will have that as, in case Harry was
wondering what he was going to do with his retreat, it seems like we’re filling
up that agenda for him pretty well.

MR. REYNOLDS: Not a problem.

DR. COHN: Okay. Well, we’re finished now for a little bit early today, and
obviously I do want to warn the new members that this is actually and
unfortunately not a usual thing to happen. I mean normally we end exactly on
time, and I’m sure that Harry will continue that fine tradition. But don’t as
you make plans in the future sort of see a one o’clock end time and sort of
say, oh, I bet I can leave at 11:30 or 12:00 because we’ll be finishing up.
You’ll be surprised and leaving in the middle of votes often if that happens.

Now I had a couple of concluding remarks. And I don’t know, Harry, do you
have anything that you wanted to say?

MR. REYNOLDS: Well, I just want to make the very last thing before you close
it is just one more salute to our four friends, you, Gene, Mark and Kevin who’s
not here. So –

(Applause)

DR. COHN: Well, Harry, thank you very much. As you know, normally I ask
everybody for input in terms of how the meeting went. But given that I am the
outgoing chair, it probably – Harry can start that up at the next meeting.

Now I think as you all know there are future meetings of the NCVHS this
year, one September 16^th and 17^th, and the other,
November 18^th and 19^th, and it sounds like there will be
executive subcommittee retreats, also potentially other hearings, subgroups and
subcommittees happening as the year goes on to be determined, and those will,
of course, be posted on the Internet and on the website.

MS. GREENBERG: And I’ll also mention that we’ve held off polling for the
2009 meetings because we wanted to wait until we got the new members. But we
will be sending that out very shortly, and please respond quickly. We’ll check
with Harry, of course. We’ll get his dates as the chair and then staff, the
dates, et cetera, and then we will be sending this out. And we really need to
finalize these dates. So please respond promptly.

DR. COHN: Well said. Well, I think, as Harry has mentioned, as we have
celebrated over the last couple days, I think as you know I become your
outgoing chair and I’ve described chair emeritus which will occur in a couple
of days. After 12 years on the committee and the last four years as your chair,
it’s been a terrific experience, and obviously as far as I’m concerned, I leave
the committee in good hands with Harry Reynolds as your incoming chair.

I’ve believe that the future of the NCVHS is bright. This is not to say that
there are not challenges ahead. We are, of course, in the midst of a transition
for both the Administration and Congress. Whatever happens, things will clearly
be different in November and then again in January, and I think we just need to
be prepared for that.

The good news is that in all of this, we have maintained our intellectual
independence, our credibility and integrity, and I believe that should hold the
committee well for whatever the future holds.

Again, thank you for your support, your camaraderie, your friendship. I’ve
treasured the opportunity to get to know all of you and work with you. I will
certainly miss you all. The meeting is adjourned.

[Whereupon, at 12:18 p.m., the meeting adjourned.]