[This Transcript is Unedited]




June 29, 2005

Hubert H. Humphrey Building
Room 305A
200 Independence Avenue, S.W.
Washington, D.C. 20001

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


P R O C E E D I N G S [3:30 p.m.]

Agenda Item: Welcome and Introductions – Dr. Steinwachs

DR. STEINWACHS: Why don’t we get started and others will be joining us. I
thought first as usual it’s good to go around and make sure everyone knows
everyone and so we can do that quickly. I’m Don Steinwachs from Johns Hopkins,
I get the pleasure of chairing this group.

MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health.

DR. SCANLON: Bill Scanlon, Health Policy R&D.

MS. GRANTHON: Miryam Granthon, Office of United Health, staff person.

MS. ROGERS: Ann Rogers, I’m the writer —

MS. MADDANS: Jennifer Maddans, National Center for Health Statistics.

MS. CAIN: Virginia Cain, NIH.

DR. VIGILANTE: Kevin Vigilante, Booz Allen Hamilton.

MR. LOCALIO: I’m Russ Localio, University of Pennsylvania School of

DR. CARR: Justine Carr, Beth Israel Deaconess Medical Center, Boston.

DR. MAYS: Vickie Mays, UCLA and former member.

MS. BURWELL: Audrey Burwell, Office of Minority Health, lead staff.

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

MS. MCCALL: Carol McCall, I’m with Humana.

MS. JACKSON: Betty Jackson, National Center for Health Statistics.

Agenda Item: Discuss Comments Received on Report –

DR. STEINWACHS: Okay, why don’t we do this, the original agenda we laid out
was at the time when I thought we might have more comments and therefore might
have to spend more time, which I’m very happy we don’t, on suggested revisions
to the report and so I think it reflects the quality of the effort that’s made
by all the committee members and Vickie that we’ve gotten this far. What I
thought I might do is ask Ann or Vickie maybe just to briefly summarize sort of
the nature of the types of things we’re being asked to change. I didn’t want to
unless you feel there’s a need to here go through those changes but as long as
we are in agreement about what needs to be changed and then delegate that to
Ann and Vickie to do and then that will come back and you’ll get a chance to
see it and it will go to then the executive committee at the executive
committee’s meeting in San Francisco in mid-August. And so at that time it
should be approved and done.

MS. NELSON: The executive Subcommittee is also being polled for a conference
call sometime in July so if that’s a possible target for this that would be

DR. STEINWACHS: That would be better yet, so it may depend on what the
timeframe is here but hopefully we could make that and have it done. And so if
we could do that first and second if there are any additional comments about
dissemination, I thought the discussion this morning about potential targets
and places to disseminate it was excellent but if people have some other ideas
about how do we get this report out. And then we need to turn to —

PARTICIPANT: One idea is to call Scott back up and ask him what his
marketing plan is going to be and just draft on it, that’s another. I mean
there are audiences and it truly is, it’s like a marketing plan and so I guess
I don’t, this is relatively new to me but what the normal course of
distributing the report —

DR. STEINWACHS: Well, I’m not sure I’m the best person to answer the normal
course, Debbie do you want to say a little bit about how most of the reports
get disseminated? Because essentially we do have one customer, the Secretary —

MS. JACKSON: Definitely, the reports are sent to the Secretary, to the Data
Council, and generally posted on the website. The report that we’ve had printed
have been the 21st Century Report, the NHII report, those kinds of
reports. This we saw as kind of a hybrid in between as Vickie had stated
earlier today, we need to have this in hard copy, it’s a little more
significant with some of the items that have come from Standards for example,
you can pop them on the web and people can grab them from there. So we’re
looking forward to a dissemination plan with lists, naming lists, distribution,
like that, I would need a contact, someone, one of the staff here in
Populations to work with me, I’ll kind of take the lead for the team to help
expedite publication and distribution that way.

MS. MCCALL: And I guess what I was thinking was if you look at the actual
report itself, and I know that the official is addressed to one individual, and
yet the recommendation is really made to try to effect behavior of a number of
different agencies and constituencies, and so anybody who is either mentioned
in the report should get a courtesy copy, anybody whose efforts went into its
design, like the people who were at hearings, but in particular people or
agencies or bodies whose behavior we’re hoping to influence, that could be a
standard setting body, it could be people that, and I think Paul articulated
this, sort of four different types of activities that we saw in terms of
getting the data and all the way through the protecting the data, entities that
are involved in that. And so there’s probably a list and then we may not get
them all but if we get the lion’s share then that would seem to make a good

DR. MAYS: There was an email that had come from Nancy Green in which she had
suggestions of people within for example HHS, I think those were like the
agency heads. But the other thing that we sometimes underestimate and if John
were here he would probably pipe up right away and that is the foundations. The
people who are most likely to carry this agenda forth are actually several
foundations who are continuing the health disparities agenda like Robert Wood
Johnson, like Commonwealth, like Kellogg, so they’re actually prime and some of
them have actually had discussions on —

DR. VIGILANTE: I don’t know, I guess we’re talking about this now, I know
the NIH National Center for Minority Health Disparities has an Congressional
mandate to do outreach and so they may be, could be a funnel through which we
could distribute through their outreach channels or they could provide us with
what their outreach channels are and we could —

MS. CAIN: I think it’s worth sending to the institute directors at NIH,
suggest the institute NIH head, I think it should go to all the institute
directors, and it might be worthwhile actually doing a presentation at the
NCMHD Council.

MR. LOCALIO: Move up to the states, I mean you did talk about states.

DR. MAYS: That’s the group that actually helped with the state hearing on
ASTO(?), could somebody help me, ASTO stands for —

DR. STEINWACHS: Association of State and Territorial —

MS. PAISANO: And they hold annual meetings and I think there’s some of it is
in Boston.

MS. MCCALL: Well, I’m there also so there’s that mechanism, there may be
some other ones that we talked about earlier today where something coming
through AHIC(?) I think is actually going to be, there’s an RFP that David
mentioned about bringing together some of the states, I forget how he termed
it, but some of the states to essentially look at where they’re, for lack of a
better term, kind of rubbing against each other with respect to security and
privacy and what he called the harmonization of certain topics and policies. So
it is not an either/or, communication should be very redundant in order for
people to kind of remember and pick up on the theme so that could be another

MR. HUNGATE: There’s another state activity called the National Academy of
State Health Policy, holds a meeting every summer of state people, and there’s
an agenda, it would make a nice presentation to be on that agenda and accompany
it with reports.

DR. STEINWACHS: What we’ll do is we’ll try and make up as long a list as we
can of these things and then I think as Debbie was talking about is try and see
what we can and actually the mailing and some of these of other things ought to
be the easiest part hopefully. The presentations and so on we can see what we
can arrange because Vickie doesn’t have an adequate travel schedule, we know
this already, and since you’re not on the committee anymore you have free time.

MS. GRANTHON: This is a question more to Audrey, Audrey maybe you think,
what are you thoughts in terms of the Office of Minority Health is celebrating
its 20th anniversary and they’re planning a national summit. Audrey
sits on the planning committee, I believe there’s a data element so perhaps
could Audrey coordinate a panel and having a whole session on it and having
some different perspective, maybe even inviting someone who provided some of
the testimonies and someone who contributed from the committee, but doing a
whole panel focusing on that, it’s January 9-11 so just hold the date on your

DR. STEINWACHS: Great suggestion.

MS. BURWELL: And also the OMH has lots of distribution networks and through
the regions, through the state offices of minority health and other contacts.

MS. PAISANO: Indian Health Service has like an address, I mean we could
provide labels for all the tribal governments, and they also have a list of
friends of Indian health that help lobby for the native issues. And one key
organizations that tribes always work with are the governor’s association.

DR. STEINWACHS: Good suggestions.

PARTICIPANT: So could there be an identification of a staff person from
this committee who would be responsible for helping first of all in compiling
this list, there are all kinds of good ideas coming out here, is that something
you can do?

DR. STEINWACHS: Audrey says, and then what we ought to do is probably
compile a list, circulate it, and then also make sure that it’s feasible and if
we need to pare it down even though we don’t want to, we can get some
priorities as to where the higher or lower priorities if we need to pare that
back somewhat.

MS. JACKSON: And in the writing of the transmittal letter, usually the
transmittal does accompany the report that goes to the Secretary is the
standard as a regular cover, I was just checking with Marjorie and we think
that another transmittal on top of that essentially would help communicate what
we’re trying to get across to the basic audience so that’s something maybe I
can check in with Ann and compiling sort of the highlights of information in
the reports, I mean essentially doing the connecting, we want the, from what it
sounded like from the communication today this is not something as Vickie and I
were saying we don’t want sitting on the shelf, it’s a living document that
relates to things that are going on and all kinds of studies that we’re using,
kind of interconnecting a lot of the issues that are out now and we can take
advantage of that in a well written transmittal.

MS. MCCALL: One more thing is that if we are going to be making some
presentations that for people who are interested that we tell them whatever our
cover is, that we would make that available. So if they wanted to make a
presentation —

DR. VIGILANTE: Like the Power Point type accompaniment?

MS. MCCALL: Yes, if there were a companion case that made it easy for them
to do that, if we make it easy for people to communicate the message that that
might be valuable as well.


DR. MAYS: Let me just build on that because part of what should also be done
is we have lots of pieces from the presenters that are actually excellent,
there are things that one would even want to use sometimes as teaching tools, I
mean the people who came in, with the exception of the American Indian hearings
most of the other hearings had a lot of Power Point presentations, some of them
are up and some of them aren’t and I think we just have to find and get the
others up —

MS. MCCALL: And make this like a curriculum almost, make it easy to consume.

DR. MAYS: That’s what I’m saying is that if there would be a way to not have
to go through every hearing, find every one, but instead to have here’s an easy
guide to classification of race and ethnicity and the issues that surround it,
and then to have all the presentations together.

MS. MCCALL: Sure, tell them how to use it and why it might be valuable, it
also honors the work that the people that came to testify did.

DR. MAYS: Yeah, that was why I was trying to push to get some of those
pieces to make sure they get up on the web because people worked hard to turn
them in and some of them were just stellar.

PARTICIPANT: — package it and that’s fine, work with that.

DR. STEINWACHS: And then if we can get Vickie out to do one of the
presentations see then we’ll have the Power Point slides —

MS. MCCALL: Don, you’re going on the road, it’s going to be a road trip for
you, you’re going to open in September —

DR. STEINWACHS: This is a one man show. I was looking for a one person show
for Vickie to lead. We’ve got agreement, it’s a one person show, now it’s a
question of which person it is at any given time right. Remember, this is a
team effort, Carol told me this, you always have to approach as a team effort.

DR. MAYS: Can I bring up just one more time about the transmittal letter,
something that I think is important in terms of a transmittal letter is to kind
of acknowledge what isn’t there because you really don’t want to get trapped
into well I said something it wasn’t there, or my group isn’t there, and I
think Debbie that notion of it’s a living document and the committee is moving
on kind of thing is very important because otherwise you’ll just get people
kind of griping because they didn’t find themselves in it but they should have
a sense that the committee has a very broad concern and that this was just one
of many pieces and that would be the good thing of sending them back to the web
where there will be other things also on the web that they could pick up on
that might be useful for them that’s not in the report.

DR. STEINWACHS: So you’re sort of suggesting that the letter could reference
the broader set of materials on the web and at the same time recognize that at
this time these were the major recommendations brought forward that draw out of
that testimony and not that these recommendations necessarily encompass —

DR. MAYS: Exactly.

DR. STEINWACHS: Let me go back to, are we done with dissemination for the
moment? I’m sure this will come back, this is also a living process.

Just to summarize, it seemed to me that we came out this morning with I
think about three sets, Justine actually said she had them at her fingertips,
I’ll let you bring them up, just make sure the notes Ann has and you have and
see to make sure, all I wanted really to do was to sort of run over those to
make sure that everyone heard the same thing and then I was hoping that it was
something that Ann would take a crack at with Vickie’s help and then we’d get
back out to the committee the suggested changes, if anyone has more input into
it, it seemed to me these were really an effort to draw emphasis and attention
and give examples in some cases so that we could make sure that we engage
people and get them to think the same way that we were thinking.

Ann, do you want to, did you take notes? I decided not to take notes because
I figured my notes, I can’t read my handwriting anymore, Justine has them up.
Ann, do you want to —

[Multiple speakers.]

MR. LOCALIO: One of the issues was the word linkage, it was brought up by,
Kevin you brought it up, Ed Sondik brought it up, and Ed kept saying there are
linkages and linkages. But here’s what I got out of it, there are a couple of
issues but one is how can you link information at the respondent level to other
sources, I think Marjorie mentioned administrative data. And the other thing is
how do you link data at the, above the individual respondent level and that
might be a geographic area. So both options are there and I think if we put in
something about linkages, we could in one sentence just say linkage might be at
the individual level or at the, I’m not sure —

DR. STEINWACHS: The contextual level or environmental —

MR. LOCALIO: Environmental level or characteristics of it.

MS. ROGERS: Another bit issue in that was linkages across HHS systems but
also HHS and other federal agencies.

DR. STEINWACHS: Right, because we wanted to give some examples talking about
HHS, Labor and Education and —

MR. LOCALIO: And there are challenges in terms of doing that which I don’t
know how much, I don’t know whether Ed was talking about the difficulties of
exact record linkage or probably a quick record linkage but I just, it doesn’t
matter, we may want to mention there are challenges to doing linkage.

DR. STEINWACHS: We already have a section on linkages, I mean we’re really
trying to give some examples and make sure the emphasis —

MR. LOCALIO: He may have been talking about the area resource files too.

MS. BURWELL: Jennifer, Ed was talking about there was something done with
the National Survey on Family Growth and another —

MS. MADDANS: It was a contextual file, it’s linked at —

DR. STEINWACHS: So that could be used as a for example —

DR. CARR: — educational and health facilities available in a community,
should be stated more strongly and defined more clearly between internal and

Could I go back to just a very, before we got even got to where Jim Scanlon
identified the five population focus areas for improvement for NCHS this year,
I don’t know if we wanted to somehow kind of link that because we seem to have
covered a lot of it. So I think if I got this all done, number one was
prescription drug utilization data, number two was national health insurance
coverage data, three was state data, health care access utilization service,
four was income and assets data, nature and quality of the data, and five, race
and ethnicity data and disparities. So I mean does that, is there a way to sort
of maybe in a transmittal letter or something to sort of link back to the fact
that these are target areas for this year, I know a lot of the work that was
done by a committee sort of helps identify some of those maybe opportunities, I
don’t know, just a thought.

Okay, then let’s see, I just have it by speaker, Paul Tang said, he really
said four things, I forget what the first one was, I think it was asked what’s
the challenge of self reporting for our disparities data, two was collect,
three was interpret and four was protect, and he said the two things he thought
needed a lot of attention were the ask and the challenge of self reporting and
protecting the importance of emphasizing the protection aspect.

Let’s see, he thought what we needed to emphasize more and also brought up,
well, brought up the issue about things we don’t know well enough, and then he
brought up about linkages to education, link between health status and
educational level, disparities track with educational disparities —

DR. VIGILANTE: I thought I prefaced it sufficiently to say that I thought it
was in here but apparently —

DR. CARR: Lost in the report, emphasize more, that was my opening —

DR. STEINWACHS: Okay, Kevin you’re on the road.

DR. VIGILANTE: Further penance for opening up this can of worms.

DR. CARR: So that’s brought up about the linkages, that health disparities
track with educational disparities, link health and educational and academic
information leads to that list of strategies for improvement, more holistic

Marjorie brought up the issue about revisiting past agendas, maybe that’s
more for our going forward. Ed Sondik brought up linkages addresses, linkage
within the department, the report does not address, maybe he meant linkage to
the outside department, there are challenges but it’s not undoable and his
example was the National Survey on Family Growth, were educational health
facilities available in that community was brought up, linkage should be stated
more strongly and defined more clearly between internal and external, I’m
paraphrasing here. Page 15 and 16, and let’s see, specific surveys, he said
mention specific surveys that are not Census, for example Justice, Education,
topics that are not just demographics.

DR. VIGILANTE: It sounds like you identified the paragraph where, you just
need to insert a couple of examples —

DR. MAYS: I think we actually know kind of where to do this but I think the
notion of the examples will be very helpful. Jennifer, I’ll either email you
because I think we were struggling with what the other dataset was —

DR. VIGILANTE: I mean the other way to do it is to create just a little
textbox with examples and just put them in.

DR. CARR: Right, the NIH, linking Early Childhood Education Survey with NIH
health information and the Bureau of Labor surveys, National Longitudinal and
Health Information.

DR. STEINWACHS: I think the sense was that we didn’t give enough prominence,
or at least get people to think about linkages as broadly as it should be and
so we needed to give examples so people thought oh, okay, now I understand
linkages aren’t just Medicare to NIH or Health Interview Survey but it’s
linkages across datasets, linkages at different levels, and then I think the
only other was that Paul Tang was saying, if we could some places then these
things can be, it would lead off, give more emphasis to the issues around
getting people to be willing to self report and the confidence we can give
people about the confidentiality of this information, that it won’t be used
against them, it will only be used for them.

MS. MADDANS: Was that brought up in terms of surveys or administrative

DR. STEINWACHS: Paul Tang was raising this more generally, he was just sort
of identifying the sort of four key things in this process starting with people
being willing to report the information and that he felt that the report was
very good but we hadn’t given as much emphasis in the way in which it was sort
of coming across about the issues in self reporting, willingness to report and
then the protections that need to be there. And so I thought looking through
the report to find where we touch on those and maybe make it a little more
forceful and then maybe in the introduction or the end someplace is see whether
or not there’s a couple of words that could be there.

DR. HAYNES: My understanding is there’s some examples of where self
reporting of race has caused some harm to a respondent, I mean that’s what it
implies but I’m not aware that that is an issue, I can see self reporting
sexual orientation as being a problem but race I don’t quite understand —

DR. VIGILANTE: It could be income, I mean other things too right?

DR. MAYS: Well, I think what it is is that people’s belief that if they give
their race that then what’s associated with that is that the treatment they got
or didn’t get or something about that treatment occurred only because it was
their race was known.

MS. MADDANS: I think a generic statement though is probably not, on surveys
this is not considered any bigger problem then anything else, that’s why I said
is it more in health care whatever but when there’s missing data and I’m sure
there’s differential reporting and we do see things changing over time but I
think if you make a generic statement it’s going to give the wrong impression.

DR. MAYS: I think it depends upon what, first of all there’s the issue of
validity that we don’t know —

MS. MADDANS: That’s a different issue, that’s not a willingness issue.

DR. MAYS: I think in terms of asking people about their race and what do we
do in terms of it being a fluid issue but there’s also the issue of race and
ethnicity and how Latinos respond to that question.

DR. STEINWACHS: Is there many times without race?

MS. MADDANS: That’s true but if you link it to how the data are being, that
there’s some kind of fear of how the data are going to be used, linking those
two things I don’t think is really appropriate in a survey situation. I mean
people may be reporting because they’re changing self identify which is true,
they may not be reporting because they don’t understand, they don’t accept the
question, that may be true, but I don’t know if there’s a fear of reporting
because that this data may come out and that there may be a breach of
confidentiality, two separate things.

MR. LOCALIO: But they may be just hanging up the following because they
don’t want to participate because some subgroups have, are much more skeptical.
Is there an empirical basis, I know in clinical trials there is —

MS. MADDANS: But I mean if you look at survey stuff you just don’t see it.
Maybe on phones, you don’t know who is answering the phone but certainly in
self, in household surveys you don’t see it.

MS. CAIN: But was the point that was made really originally specifically
related to reporting of race or was it just self reporting in general? I
interpreted it as self report in general and how do we get people to report
better or disclose —

MS. BURWELL: What my note says, he really emphasized that point under the
protect part of the four things he said and there were privacy concerns and
other health information might be used in ways that wasn’t disclosed when the
data were collected, and he was saying how to ensure the populations that the
data is used for the purposes that it’s collected, so it goes more to, not so
much the reporting of the race but why someone won’t report it.

DR. VIGILANTE: It struck me he was just making observations, I don’t think
he was looking for an alteration in the text.

DR. MAYS: He actually brought it up with me beforehand and I just encouraged
him to share but he didn’t bring it up as something —

DR. STEINWACHS: Well, I encouraged Kevin to talk too which was a mistake —

— [Laughter.] —

DR. VIGILANTE: I was planning to keep my mouth shut, but no, you had to tell
me to speak up.

DR. MAYS: I don’t think any of these comments were towards a negative as
much as if there’s someplace where we can kind of pump it up a little bit, so I
don’t think we have to change things as much as I think it’s just a matter of
maybe if, some things seem buried is what it is.

DR. STEINWACHS: Well, why don’t we do this, we’ll ask Ann and Vickie to turn
their eyes to the text to see if there are on this some places that might be
added emphasis without changing the report, we don’t want to change their work.
And then on the linkages is really to give some clear examples so that people
are much clearer about the nature of the different types of linkages, the
levels, and the breadth of the linkage question.

DR. VIGILANTE: Do you want me to summarize what I was saying? Whether we use
it or not I don’t care but just you can, you’ll have it.

DR. STEINWACHS: Any other advice to our working team to bring this to
closure since we have a vote so we don’t need much more right? Well, everyone
should pat themselves on the back, particularly Vickie and Audrey and Ann and
others who worked very hard personally and other of those of you who have read
and commented on it, very much appreciate it.

Agenda Item: Discuss Ideas for Future Workplan –

DR. STEINWACHS: Let’s move the agenda to our future and there are really two
things I was hoping, one is maybe even it might be useful, Edna, yes.

MS. PAISANO: Excuse me, before we go on and leave the report, at our one day
session, whenever it was, we talked about doing a letter on American Indians
Alaska Natives but again when I read the report and went back and read all the
letters, like on the surveys, the other two that went forward, the commentary,
I really thought except for one it captured what came out of the hearing for
American Indians and Alaska Natives. I guess the one thing was sort of, other
then Indians is the trust relationship and the government which to me it’s more
of a resource, if something was put together that would reference where people
could find this or something like that.

DR. STEINWACHS: Let me see if I’m responding, I thought in talking about
future research it was maybe two things, one is, and just where you’re
directing us at is what were things that came up in the hearings that Vickie
supplied I’m sure a list of the recommendations that we dropped out of the
report and so there’s a question of are there things that were developed as
part of producing this report where there are next stage issues or things that
we’ve left undone that we want to do. And so the idea of having a special
letter on issues around American Indians and information available on health
was one of those things we discussed and so I think we ought to put it on the
list and maybe, I wasn’t quite clear I guess whether you were saying there were
some things we could do very quickly just trying to draw people’s attention to
the information.

MS. PAISANO: Well, I think there’s been a lot of, I think there’s a lot of
resources and information that maybe the committee could use or other agencies,
not only within HHS or maybe other government but I find it’s more that people
really don’t know the history of the government, government relationship, and
that’s what I was thinking about, maybe I could put something together that
gave background information and resources about that.

DR. MAYS: I think what’s needed is that many people don’t understand the
whole, either data collection infrastructure issue nor what sovereignty means
relative to data. I was just at a meeting last week where they were just I felt
sorry for the government official that was being criticized, to have no sense
at all that we don’t own the data. A person stood up and said they didn’t want
any data presented that couldn’t have American Indians in it so all that, like
NCHS surveys and stuff, and what they didn’t understand is kind of how data is
collected and how Indian Health Service is kind of a whole different
infrastructure and privacy and confidentiality issues. At least the reason that
they were pulled out is because of sovereignty and needing to have people
understand that you can’t do exactly the same things for the American Indian
data needs that you can for some of the other populations. So I think that’s
the piece that really needs its own front to it and I think the rest of the
recommendations are fine but it’s just the government is not in the same
position because of the ownership issues that exist within American Indian
communities and that you get tribal data quite often is only through IHS
clinics and your infrastructure is horrible in IHS clinics.

MS. PAISANO: And working at IHS we make sure if any tribal data is given out
they have agreement with the tribe —

DR. MAYS: It’s a whole different set.

MS. ROGERS: So do we need to add something to the report then is it a
different venue for that information and material?

DR. MAYS: I don’t think we can —

MS. PAISANO: I think it’s a different venue because, I mean again this is on
race and ethnicity and at least when I read the report and looked over all the
letters that had been written before I thought it mostly captured what we got
out of the hearing, a sampling and stuff like that, it’s just this last piece
of sovereignty and government to government which, I mean it will take probably
the same amount to sort of put together an explanation and resources, or at
least half this —

[Multiple speakers.]

DR. CARR: You don’t really mean the same amount —

DR. STEINWACHS: Probably the current report. Well, I guess two things, one
Edna, I think all of us as a committee would benefit from reading that and
understanding that. I guess the other is sort of the question of what would be
the next step with that other then are we going to understand it and that’s
less clear to me right this moment what that would be and so if you felt that
you had the time and energy to do it I know I would very much value
understanding better because I don’t’ really understand the relationships and
then we could have a discussion about does this help us take a next step that
would be a way to communicate about the special issues that are around
providing information or be supportive of the sovereign American Indian nations
in having their information, to use that, so that might be a step.

I was going to suggest, cause everyone to think hard and maybe go around the
room and get everyone to at least make one suggestion about what they thought
this committee ought to be tackling in the future and you don’t have to limit
yourself to one but I thought it might be helpful just at this point to try and
generate a little bit of a list, get that list together and then let people
think about it some and try and then have a conference call and do some more
discussion about that list.

The plan that we had talked about before was to try and keep the agenda for
the Population Subcommittee in the future very complementary to the Quality
Workgroup because there’s a huge overlap in this group and so I think Bob and I
had agreed that it didn’t seem practical for the Population Subcommittee to be
moving off in directions very different then the Quality Workgroup but we do
recognize that we are focusing on population issues, the Quality Workgroup is
both interested in populations and personal health services but a lot of that
discussion really around personal health services and so you can take such
crossing issues as what you might raise in the personal health service level of
IT and quality, how is the EHR going to support population health information.
I think there are ways to build it, I didn’t want to limit our initial
discussion here about ideas for that but it seemed to me practicality may be to
say we ought to be trying to build things that we feel are complementary
possibly as we move ahead.

I also had and I wanted to share with you was an offer by an interagency
committee on disability research asking that we consider working on disability
or functional measurement, functional status, which has been something else
that’s been on this committee’s agenda.

So if it’s agreeable why don’t we just go around and if you have ideas that
you think ought to be what we ought to be pursuing share them and get as many
things as we can out on the table before we try to process and try to narrow it
down. Does that make sense? Bob, you’re sitting to my left which is a dangerous

MR. HUNGATE: Had I known —

— [Laughter.] —

MR. HUNGATE: I think the Quality Workgroup agenda and Populations agenda
have to overlap by definition because if the Quality Workgroup focuses on
performance measurement, which is kind of where we moved a little bit in our
process quality discussion, that system in the long run should serve both
population need and individual need. If it’s a good system there should be
coherence between population measures and individual measures. As I look at the
population report, the excellent population report I should add, I’m very
impressed, the coherence that’s in that report is excellent. But then I take
that report and I look and I see, it says population, well then you got to get
the subpopulation, you take that long enough you’re at individuals, it’s
splitting it as you go down. And I can remember enumerable conversations where
somebody says taking a population guideline and applying it to an individual
patient when it’s supposed to be a 60 percent ratio, 60 patients need this,
there’s no necessary way in which you do that so that’s a measurement problem

DR. VIGILANTE: So Bob, what is it about the, granted, I’m not challenging,
just trying to flesh it so I understand, what relevant domains would the
population group tackle different from the quality group but yet support or
overlap in the way that you’re envisioning? Or is that yet to be determined?

MR. HUNGATE: Let me state first that I don’t understand well the
distinctions between population health as everybody understands the term and
individual health, so I have trouble personally from that standpoint. But that
said let me go back and then say that I think functional status and its
collection in a measurement system, and I think race and ethnicity and its
collection in a functional way, one of the things that came up in our retreat
was the idea of a complexity zone, Don Detmer had a nice slide, he said where
there’s a few things up here where the measures are pretty clear, diabetes got
pretty clear measurements, there’s a few things here that are totally uncertain
and in between there’s a lot of complexity. And I think that your report
clearly shows the complexity of race, ethnicity, socioeconomic, and no amount
of rulemaking from the top is going to diminish the complexity because you
can’t do it, and so it’s going to have to come from the bottom up in some way
the people decide they want to measure how their population is doing and I
think that’s health which is functional status and I think it’s the disparities
of whatever, so it’s marching that side of the agenda, it’s evidence based
medicine. And then the other side is trying to say well how does evidence based
medicine get translated into individual health care.

That’s my conception and I don’t know whether it makes any sense or not but,
maybe that’s pretty loose —

DR. STEINWACHS: Two things, AHRQ puts out now two reports they’ve put out
for two years, one is a National Quality of Care Report Card which is really a
population level, or tries to be at a population level, and the other is the
National Health Care Disparities Report Card, again in the population level,
and so one way would be to potentially say well maybe this committee might want
to look at some of the issues and some of them have written up, there’s a peer
reviewed article on some of the challenges they faced in trying to produce
these reports, are there ways we can make a contribution to helping address
that which would be different then say measuring quality at the individual
patient level at the time of the encounter and trying to say well is your
diabetes care good there versus can we talk about populations in America and
how good the diabetes management is related.

DR. MAYS: I do think there is rulemaking that is very much needed that then
allows you to have more clarity about the issues and some of the complexity
right now is because we don’t have clarity, we don’t have clarity in the sense
that we’re all using the same language, we don’t have clarity in the sense that
we have enough systems in which this is being measured even, like even in the
report we ask the federal government who gives an enormous amount of care for
them to decide that they’re going to collect this data. That then I think helps
you to really decide whether you have real evidence or not. Even though we say
that just collecting this data, it’s almost like, what Paul said, it’s almost
like well there’s the collecting issue, let’s rulemaking in place and then get
that out of the way. Then there is the storage of the data, rulemaking we can
bring some rationality to it. I really do think that there is rulemaking and
standards, that it’s a very good time for that.

MR. HUNGATE: I think there is too but I have the feeling that a part of the
rulemaking is informing the decision process at the very lowest level, your
discussion of the definition of Creole, there’s C-1, there’s C-2, there’s C-3
and they’re all different and you can’t aggregate them. But in Boston what you
want to collect and how you want to deal with it, you got to make sure that
everybody understands your definition of Creole is different then the standard
definition, so a rule is, NLM has definitions, if you deviate from that
definition in any other way you got to call it a new definition, that’s a rule,
but that’s a rule that’s applied, can be applied in a community to say we need
to understand within our population what subpopulation cohorts we’ve got things
we need to fix for, so it’s a distinction between whether it’s national data or
there may be no, it may not be comparable —

[Multiple speakers.]

DR. VIGILANTE: I guess but the proposal on the table is to say that to look
at quality indicators or measures at a population level as opposed to an
individual level so some may be the same and some may be different, you might
look at, some could be morbidity and mortality outcomes for people with
diabetes of a certain population or it could be what percentage of people with
this population, of this population gets hemoglobin A1Cs every three months
like whatever the metric is compared to an alternative population. Is that sort
of what you’re talking about?

DR. STEINWACHS: Yes and the capacity of the health information systems in
the United States to support the population level quality is different, so that
would be one kind of issue that you could do. Why don’t we keep going around,
we’re going around with suggestions for a future agenda, you’re now on the end
of the list, we just missed you.

[Multiple speakers.]

DR. SCANLON: Well, actually the more I spent with the committee the more I’m
confused about sort of how, or how the agenda divides between the population
group and the quality —

DR. STEINWACHS: Remember, we can be arbitrary.

DR. SCANLON: And we can be arbitrary. Let me throw out something that for a
while back worked for me, I mean part was the idea that particularly in the
Quality Workgroup I felt like we were talking about data at the individual
level that then could be built to look at some population elements and in
certain respects I think of it as the administrative systems, we really would
like to have IT enhance our capacity tremendously in terms of really tracking
the entire population and knowing a lot about sort of them both from the
perspective of how effective are various services, what’s the access to various
services, from a surveillance perspective, can we detect the presence of
infectious diseases, things like that. You only go so far though because one of
the things that came up in our retreat, people are focused, these records turn
out to be parsimonious, you just don’t put everything out there, you’ve got to
limit it and there’s a need you want to at times to sort of have a richer
picture both of an individual but also the individual’s relationship, family,
sort of their resources, income, assets, etc., and to that we took a great turn
into surveys and the survey information, it’s almost like a separate system and
the question is sort of how good is that system working and what can we do to
sort of improve it. Even if we have a world in which the IT at the individual
patient level is tremendous still we’re going to have a need for a world in
which do surveys and collect information that allows us to look at sort of
health and health care sort of in a broader context.

So that’s kind of where I was thinking this group might sort of get in where
the Quality Workgroup seems to be sort of focused on the IT quality sort of
interface, that we might focus on issues related to surveys. And you circulated
the offer that we’ve got with respect to functional status because functional
status as measured in a survey may be very different then the functional status
we measure in a patient record —

DR. STEINWACHS: That’s usually at the time of service.

DR. VIGILANTE: — for a variety of reasons, I mean that’s kind of where I’m

DR. STEINWACHS: Anyone around the table can add to this, Miryam, if you want
to add anything.

MS. GRANTHON: I think it’s important also, we’re having a conversation, also
to bring attention to the minority racial ethnic group and specifically because
it’s actually a project we’re working on in MNH of how health information
technology has reached the health care disparities for limited English
proficiency communities or for low literacy communities, my interest
particularly would be that and our office working within AHRQ and Dr. Brailer
was actually one of the invited participants on July 20th and we
should have a proceedings so that I could have something to present to the
group in terms of what’s being crudely out in the field, there’s very little
published evidence on it, there’s a couple of hand projects that we’ve picked
out so that would be my interest.

And then another one that I thought may be interesting to the group, Healthy
People got brought up before, as many of you know I used to work with the
Office of Healthy People, and this year particularly they’re going through
their mid course review and there’s an opportunity for public comment and
August 15th and September 15th, so I don’t know if that’s
a sort of timely opportunity for something that the full committee would want
to participate in. But those are the only two ideas.

DR. STEINWACHS: This is to be public comment on the health goals —

MS. GRANTHON: Exactly, under assessment of the mid course, and there may be
other elements that come out of it but that’s something that just, it’s very
timely, but those two ideas, helping to push technology specifically for
limited English proficiency communities and the literacy and the second item is
maybe engaging something with Healthy People.

DR. CARR: Could you say that again? The first thing was —

MS. GRANTHON: The health information technology specifically how to
eliminate health disparities for a limited English proficiency, the immigrant
community, Asian or African recent immigrants, the Latino population groups,
are working with rural health, and Dr. Brailer mentioned today a little bit
focusing on rural health and vulnerable populations. And actually tomorrow he’s
doing a webcast and I’m happy to share that people.

DR. STEINWACHS: Keep on going around the table.

DR. HAYNES: I’m Susan Haynes, senior science advisor with the Office on
Women’s Health, and I guess you may or may not know that we created a database
last year that actually includes the full racial ethnic minority populations
and go around to the states continually and gather every federal health
statistic that we can, as well as state health statistics to put on this
database and it’s up on the web right now. So we’ve had a lot of experience in
dealing with the states as well as the federal agencies to get definitions and
things of that type. And I think one of the challenges that we’ve had in
collecting that information is that the states refuse to change or they really
refuse to come into line with any kind of federal standard —

DR. STEINWACHS: And they take pride in it.

DR. HAYNES: Well, that’s true and they say this is the way we’ve always
collected it and we don’t collect for example information on Latinos and we
never have and we never will and I’m just wondering how you’re going to
implement this particular report that you have, I have a feeling you’re sort of
dropping it now and saying okay well I’m going to give this to HHS and let them
figure it out but I’m wondering if the committee could have a more powerful
role by bringing in the folks that you’ve made recommendations to instead of
dropping this right away and sitting down and having a conversation about the
recommendations with the agencies that could be the most effective in doing
this, for example agencies that could put on training programs, you’ve got a
lot of training in here, the NCHS survey kind of things, but to have something
that follows this so that you have an implementation plan for the
recommendations and then they just don’t sit on the shelf because that’s what
happened to the last report that came out of HHS about four years ago. There
was another committee that just, that did work like this in HHS but if there’s
no follow-up on the part of the committee then it’s likely that nothing will

And I guess the second thing I would say in terms of your, the issue about
population groups, the department now is interested in probably three or four
major populations groups besides racial ethnic groups and I think you, I think
someone mentioned them earlier but there’s a problem with older folks, say 60
plus years old, because most of the datasets cut off at 75 or 85 and the
presence of a population that is going closer to 100 and I’m just wondering if,
and thinking about functional status or just ability, either one of those, if
you might put it in the context of aging, an aging question as well because
that’s where all your disability ends up and I think the interest in functional
status is also an aging issue, a lot of disability is going to again end up in
the older population. So I’m wondering if you could, if you’re thinking about
that it could be a combined approach because we don’t have data, a lot of data
on folks over 75 in most of the datasets. That would be just a second one.

MS. MADDANS: All the datasets though —

[Multiple speakers.]

MS. MADDANS: I don’t really have any preference for what we do —

DR. STEINWACHS: Jennifer, we’re recording this —

MS. MADDANS: I think we should try something new.

DR. STEINWACHS: — because I’ve been lobbying for someone to support having
siesta time during these meetings, so this fits very well with not having —

MS. MADDANS: But I think you might want to try something easy after doing
this whole thing and I wouldn’t pick functioning as easy, it’s a very
complicated thing, and I think that the specific proposal is for something very
specific, it’s for, it’s a targeted data so to actually think would be useful
for the committee to look at but I’m not sure you want to look at it in its
creation stage as much as maybe after, I don’t know that’s something to

But the general issue of comparability across surveys and we have most
implements within the department although there are mechanisms where we talk
about things across departments, there’s a forum on children and family
statistics, there’s a forum on aging, there’s an interagency council on
statistical policy, there are all those things.

But there are these kind of core modules that I think there’s a lot of
interest in getting consistency across the surveys, so race ethnicity has
always been kind of the poster child for that because we get so much guidance
from OMB and we of course always do what he tells us to do.

And then there are some other things that OMB also does that we don’t have
to worry about, how do you define a metropolitan area and how do you define an
occupation, define an industry, and to some extent how do you measure

But beyond that we’re kind of on our own and are there things other then
race that you would like to see consistency across HHS surveys so that we can
do, we really can’t do linkage in what you were talking about before but you
can do crosswalking and one of the things of interest to the department as I
said is a measurement of income, which has again according to my rule don’t
take something hard, don’t do that one either.

But there are, there’s —

DR. STEINWACHS: Jennifer, we’re looking for the easy suggestion, the low
hanging fruit so we can be famous here.

MS. MADDANS: We’ll think of one. But even to, age is a good one —

PARTICIPANT: No, I think educational attainment might be one.

MS. MADDANS: There’s probably more comparability now then there have been
because we tend to follow Census so much in terms of that. But thinking about
what you might think would be important and then going back to your idea about,
to the administrative records where it’s real hard to get comparability on
anything, how do you foster that or do it in a way that you can crosswalk. So I
don’t have a subject matter more or less an approach, because it is very hard,
it’s not only the states that don’t want to change, you have to have a real
good reason to change a survey where you have a data stream for 30 years and
you’re going to change it, you got to have a real good reason.

MS. CAIN: Yes, I want to follow up on Susan Haynes comments a little bit on
not dropping this report, one of the things that I have been thinking of, and
this is a more longer term project, but the committee should really think about
how to follow-up and kind of track what’s been accomplished out of this so we
can assess whether some of these have been adopted by various organizations and
who did them and obviously it needs to get out there for a while before we can
do that but we can think a little bit about how we might go about doing that.

DR. STEINWACHS: Great suggestion. Edna? We’re coming around again.

MS. PAISANO: I guess one of the areas, and I think the committee has started
doing some work on mental health, but I guess the broader behavior health, what
can you change to get, have better involvement.

DR. STEINWACHS: Just share with those who are new, when Vickie was chair we
had started discussions about moving on the next item to mental health because
mental health isn’t captured very well in most of the surveys and the NHANES
they had been capturing it but only for, I think it was under 44 years of age
or something, there was —

DR. MAYS: 18 and 34.

DR. STEINWACHS: 18 to 34 year olds were the only ones who were getting,
which didn’t quite, and it was being dropped in some other surveys and so it
was through that area about is there a need for consistent kind of measurement
of mental health indicators the same way you think of measuring self reported
health or you can think of measuring activities of daily limitation almost
consistently in those surveys that we get into it and so that was one of the
items, I think it is important to consider that on this agenda too.

DR. HAYNES: We can’t get mental health data out of the household survey from
SAMHSA(?) for women.

DR. STEINWACHS: Can or cannot?

DR. HAYNES: Cannot.

DR. STEINWACHS: Is that because they don’t have it or they won’t give it?

DR. HAYNES: They won’t give it, they won’t break it out, they don’t break it
out that way and we’ve been working with them for a year trying to pull it out.

MS. MADDANS: That is a good example, there is no consistency across any of
the surveys, even our own surveys we’re not consistent in what we ask on mental
health, we’re asking a lot more but —

DR. HAYNES: I mean they have it but they just have a policy of not reporting

MR. LOCALIO: Who’s they?

DR. HAYNES: SAMHSA, household survey, but they don’t put it out.

MR. LOCALIO: And who does SAMHSA report to?

DR. HAYNES: The Secretary of HHS.

MR. LOCALIO: Yeah, but I have no patience with stuff like that, it’s the
same secretary, one secretary could just say report it and we’d get it done, I
mean this is ridiculous, I have no patients for this stuff.

DR. STEINWACHS: Well this is the right committee to be one —

[Multiple speakers.]

MR. LOCALIO: — restrict their access to the data so why collect it?

[Multiple speakers.]

MR. LOCALIO: I’m a taxpayer for crying out loud.

[Multiple speakers.]

DR. VIGILANTE: Well, I think that actually following on some of the comments
that were made earlier and actually dovetailing with what Gene said earlier, I
think that really following on and perhaps expanding on this an drilling down
into this notion of linkages deeper and saying what linkages are we talking
about, we’ve actually figured out what are the costs, what is our wish list
data and statistically speaking of what we would like to have synthesized
across different agencies and what gives us the most bang for the buck,
prioritize this, cost/benefit, we actually bring people and say here’s five or
six things or eight or nine things we should really be pursuing to get linkage
and cohesion here and comparability across a variety of different either
surveys or administrative data or so forth.

So I think that would be one thing, then I have some other things, sort of
random thoughts that may be totally unrelated to this committee or too specific
but one is really the idea of the, it may not be within our purview but the
notion of how different populations may be more or less prepared or vulnerable
in the preparedness theme. Now DHS may be dealing with this, I mean I don’t
know, but if there’s, is there a preparedness disparity or is there different
ways that preparedness needs to be pursued in different populations that has
not received adequate attention.

Related to that is the digital divide among different populations and how
are we going to address that both from a health status point of view but also
from a disease surveillance point of view, disease surveillance for routine
diseases as well as the ability to surveil for intentional attacks, syndromic
surveillance and that sort of thing, it’s an emerging, again, these sound a
little to be unlike things you’d ever thought about before may be beyond our

DR. STEINWACHS: Russell, we’re ready for your next statement.

MR. LOCALIO: Well, we’ve put a lot of effort into this so let me ask this,
what subpopulations have we not covered?

DR. STEINWACHS: In what, in looking at this report?

MR. LOCALIO: We talked about, we talk a lot about subpopulations and race
and ethnicity but what populations are not captured in our surveys in our
administrative data and at least as the systems are, as we understand the
systems, we know CMS gets Medicare population and Medicaid population but of
people who were insured but three groups that I want to mention and there are
all very (?), one of them is very unpopular, one is the uninsured and the gaps
that we’re always going to get, and I know in our report we reflected on that
but this is a big gap, if people don’t have insurance it’s much harder to get
data on.

The second one is what are our linkages with the Veterans Administration and
all the people that are getting cared for by the VA and they have a very good
data system but do our surveys get veterans, although they should I don’t know
the answer to that.

And of course lastly there’s a huge population in federal, state, and local
prisons, I don’t think they’re ever caught by any of our surveys, probably a
hit or miss by the data system, by the administrative data system. Are they
covered by Medicare? Prisoners?

DR. SCANLON: Generally not —

MR. LOCALIO: They’re probably totally out. And how many people incarcerated
now? Two million? A big number, and from what I know HIV, hepatitis A, B, C,
mental illness, substance abuse, you name it they have it, both genders, so I
don’t know what to do about that part of the population. Of course they don’t

DR. SCANLON: I’m not sure if they’re not covered by Medicare, or on Medicaid
because it would be in the state’s interest if you’ve got state prisoners to
apply for reimbursement.

DR. VIGILANTE: While they’re in the prison, I mean I did a lot of care with
that population, of course when they’re in prison the prison system pays for
their care. When they’re out, if it’s a young male it’s unlikely to be covered
by anything, if it’s a woman and she has custody of her kids then she may have

[Multiple speakers.]

MS. CAIN: I think it would be helpful to get someone from the Justice
Department to come talk to us because they do a lot of work in the prisons and
in terms of surveys and things like that so I can’t tell you exactly which ones
but I certainly know, I sat on committees with them and they have special human
subjects issues, it’s a protected group, and so I would really, I think we’d
benefit by having someone from Department of Justice come and talk about what
they do.

MS. MADDANS: They have a statistical, justice statistics.

MR. LOCALIO: And the link of course is the, especially infectious diseases
problems in prisons has severe implications for the health and health status of
the non-incarcerated population because their diseases get out a lot sooner
then the prisoners do.

MS. CAIN: And that would probably be an interesting piece to look at because
I’m sure the Department of Justice drops them as soon as they get out and then

DR. STEINWACHS: Then we’re supposed to pick them up.

MS. CAIN: Right, in terms of collecting information on them at least. But I
think that whole issue of what happens in prisons and how that works and then
what happens when they leave would be an interesting topic.

MR. LOCALIO: Yeah, I guess Jennifer mentioned this, Barbara Altman’s memo,
I’m not sure that there is such a thing as a short uniform basic measurement of
disability unless short means something in the neighborhood of 45 minutes to an
hour. I have to be quite cynical about this, I’m not sure that it’s possible to
do it. Because disability has so many dimensions to it but I think if it were,
I’m not saying that it’s a bad idea, I think it’s what they call a challenge.

MS. MADDANS: I told you, nothing hard.

DR. STEINWACHS: Take Jennifer’s criteria and find something easy.

MS. MADDANS: But there are two major activities going on, one domestic, one
international, to develop a short set of questions that do not get everything,
are targeted, but that you can get consistent data across multiple data
systems, and that they’re talking about that.

MR. LOCALIO: Well, I think it’s a good thing to work on —

DR. STEINWACHS: — this issue of the research that you would do on this
topic, the other is how would you evaluate what’s out there now and many times
we’re stronger in evaluating what’s out there now and how adequate it is, we
certainly can’t undertake research if what is being said is that we need to
really take existing measures and look at could you boil them down —

DR. HAYNES: The questions we get on our dataset that we don’t have is
measures of disability and measures of mental health, and we just can’t find
them and we scour everything, we have to use the Census measure of disability
and it’s criticized a thousand different ways, it’s tough, those are the two
biggest questions we get.

MS. MADDANS: Well one of the areas is to create new questions for the
American Community Survey should it happen, which would substitute for the last
Census and the current ASC questions because they have been criticized although
it is hard to do this in this amount of space. There is a push to do another
disability survey the way NCHS did a couple years ago which was very expensive
and very complicated —

DR. STEINWACHS: Did that have the disability screener and then you have a

MS. MADDANS: Yeah, we’re not doing that again, that just was too hard. We’re
going to make life easy. But it’s also you only do it every ten years —

DR. HAYNES: But you have the methods for it —

MS. MADDANS: But the problem there is you do it in ’95 and it’s 2005 and we
haven’t even thought about doing it so how do you do something that becomes
part of the infrastructure that may not give you two hours worth of, the
problem with that it was two hours, two hours worth of data but it gives you
ongoing collection of 80 percent of what you want and how do you think that
through. And it is kind of an, I mean concentric circles, if you can get, we’re
working on six questions that you can put on any survey that will give you some
identification of functional status and then a 20 set version and then
something if you wanted to that you could put on a health survey, then if you
really did have 25 minutes or a half hour to add on a supplement what would you
do, so it’s trying to do it in a coordinated way understanding more what you’re
not getting then what you are getting, you can’t get everything so at least
know what you have and what you don’t have. You’re not going to have a lot of

DR. SCANLON: One of the problems though with the disability supplement
wasn’t it because there was NCHS was sort of getting funding which is that if
you have money your questions will be asked and that unfortunately is essential
to fielding the surveys but it ends up sort of adding to the length and for
very special interest kinds of questions that really may not be that relevant.

MS. MADDANS: You’re right, it could have been a lot easier then it turned
out to be and we’re still paper and pencil so we grew out of the field, there
are a lot of reasons for it, but I think even we want more information on an
ongoing basis then we’re currently getting and then if we can do something big
great but you don’t want to wait every ten or 15 because it will be 15 years
before you would do another one. And we’re not getting funding streams where
you’ll get an extra $20 million in a year and then it will go away, you pretty
much have to budget for flat funding.

DR. SCANLON: Can I just amend or add to Russ’ point about incarcerated
populations, certainly one thing it would be very useful to know, which is
often not tracked, is whether children, a child’s parent has been incarcerated
or not. There usually is state level stuff rather then national but kids whose
parents are incarcerated have several fold higher risk of being incarcerated
themselves but they also have a higher risk for high risk HIV behavior and
that’s one thing so as an early intervention group, being able intervene early
in these kids lives would be but it just, they’re not identified by and large.

And the other thing would be, and I hear rumors that this is happening but
I’m not sure, the rolled up Medicaid data, so that you don’t have to go state
by state by state to get —

PARTICIPANT: It is happening.

DR. SCANLON: It is happening —

PARTICIPANT: But it’s not universal but it’s happening —

DR. SCANLON: That would certainly be useful to have it.

DR. CARR: Okay, so many good ideas it’s hard to come —

DR. STEINWACHS: Well, it’s always hard to be at the end of the line but then
you can think really wildly.

DR. CARR: Right, well here’s a wild thing, what is the impact of the
electronic age on our data collection, namely the whole cell phone issue,
versus a land line, and in terms of electronic health record what assumptions
are in there that assume, as we heard earlier internet access or computer
access, so that’s just out there. But you asked for an out there thing, that’s
one thing.

The second thing, I like the idea about the linkages between the two AHRQ
studies that you mentioned in terms of, the National Quality Report Card and
National Disparities Report Card, I mean I don’t know enough about it to
elaborate but I think again trying to, if we’re building on the link between
quality and populations I think that’s interesting. I definitely understood
let’s do something easy and kind of short term, I think we need a breather and
sort of get a kind of momentum going. It is interesting that functional status
has been on the agenda for many, many years so probably important but it
probably doesn’t meet the criteria of short.

And then finally when David Brailer spoke with us at the last meeting and he
outlined his four things, the fourth was populations and population health, I
don’t recall in detail what exactly about that he thought was so important but
he made a very pointed request of the NCVHS to spend some time on that. I don’t
know, do we Marjorie?

DR. STEINWACHS: I was trying to remember, I don’t remember the specifics
either —

DR. VIGILANTE: I don’t remember that there were any specifics, well
population health was one of his four categories right so it might be actually
useful to go back to his framework that he issued in July and look at how he
defines that and what are the, because that’s a good place to plug in to
contribute to the discussion I think.

DR. CARR: And just if I may for a second, I understand that quality, well, I
mean quality cuts across all of the areas and I don’t think we have to be bound
by that particular relationship, I think clearly NHII and even standards, I
mean everything connects these days so I think it is important to leverage
themes that are ongoing in the other committees and of course privacy, so that
we have a connection among them.

DR. STEINWACHS: I think being interconnected I think is what you’re saying
is it’s valuable, the other we’ve talked about sometimes with whereas it’s
great to have a customer for what you’re doing because there’s an agency,
there’s someone out there who’d be interested in what we were doing so I think
as we go through these topics it’s useful to sort of come back and look at
that, who would actually, I think you’re next —

DR. MAYS: No, no, no, I want to respond to this. One of the places you might
find out a little bit more is David Brailer came to the executive subcommittee
when John as the chair, we met at the Robert Wood Johnson Foundation, and he
highlighted population health then. Audrey and I both were there, I’m trying to
remember what he said, and he was just kind of kicking it off then and what I
remember is that for him it was very important, I don’t think he had developed
it yet but we had a discussion with him and gave him some ideas but what they
are I can’t remember. I was going to say if you go to those minutes you might
actually get an inkling of what was talked about so wherever it was at Robert
Wood Johnson Foundation —

DR. STEINWACHS: So this is minutes —

DR. MAYS: From the executive subcommittee from last —

DR. STEINWACHS: August 2004.

DR. MAYS: Yeah. It was a good discussion.

DR. STEINWACHS: Vickie, I wanted to add you in because it has been suggested
and you and I have talked about it a little bit, things that are natural
follow-ons from what we’ve done ought to be considered as this agenda, so Susan
I think you were making the point about really what’s the implementation plan
that goes with some of the items that we’re talking about and so the idea of
pursuing linkages could be exactly that, is to look much more specifically at
what are linkage issues that could be tackled that would make a difference and
so I think —

DR. MAYS: What I did based on kind of what we talked about, Bill briefly
has, one I found what the recommendations are that were left out of the report
because Ann did a very nice job of just taking those and so I just made the
copies for people to have them. And then what I did was just went through and
made a set of notes about what kinds of things were on agendas that are still
out there, so just so that it’s put out there and then the committee can decide
what to do with it.

And I want to talk about the mental health one because there’s actually
there are two issues, one came up in a conference call and the other is
something that I think we haven’t talked about here. And one of the things I
was totally shocked about is that to some extent the federal government doesn’t
ask questions about the non-negative aspects of mental health, like there’s
never a question about happiness. On the General Social Science Survey —

DR. VIGILANTE: What’s that?

DR. MAYS: That’s the problem —

[Multiple speakers.]

DR. MAYS: For example NIH said that, NIMH said for example they couldn’t
because that wasn’t under their purview, they needed to know about pathology.
So you might want to think about the fact that we don’t always want to know
just the disease side but you actually want to know —

DR. STEINWACHS: You want to know about health.

DR. MAYS: — wellness and what have you, so that was one issue that was on a
mental health agenda.

The other is trying to get HHS to combine mind/body things so that when
you’re getting physical disease they’re reporting on cardiovascular disease or
diabetes, we also know that we’re continuing to see this relationship, this
co-morbidity with things like depression and anxiety. So it would be to push
some of those reports for example to also have mental health in them.

The other thing that was on the agenda is the National Child Study, as a
matter of fact because I had to go on the web so much there was a letter that
we wrote it on and said it should go forth, set forth, but it’s never made. So
I will actually pass that on so that you can, I have the draft of what was to
go, it was to be signed off by the chair.

The other is what’s left in the report, I’m surprised Russell didn’t bring
this up but it was the privacy and confidentiality issues and that is the issue
of policies and procedures relative to privacy and confidentiality for small
group data and I think it also gets to Suzanne Haynes issue of once you start
then cutting data more now you have gender, then you start for example having
less in terms of data releases. If one is going to move ahead on the geocoding
policies and procedures I think then privacy and confidentiality will come up.

Edna brought this up and I want to put it in a different context and that’s
what left is you’ll see there’s the issues about territories, territorial
recommendations, American Indian recommendations, it goes to the notion of
indigenous people that have different relationships with the federal
government. So it’s almost like we had to say well what hearings did we still
want to do, we wanted to go to Palao(?) and we wanted to go to Guam and we
wanted to go, we were told we couldn’t even go to Hawaii but anyway —

DR. STEINWACHS: Vickie used to market joining the subcommittee because she
could travel, because we had to go visit these territories.

DR. MAYS: But we never got there though.

DR. STEINWACHS: I was very impressed.

DR. VIGILANTE: That would make me happy.

DR. MAYS: See? We don’t have to do a survey.

DR. STEINWACHS: We ended up having an interview with people on Palao which
is not that far from Taiwan and areas out there and they got up and were up at
what it was 4:00 a.m. their time, they were talking to us and we were sitting
in San Francisco, but they stayed up all night in order to do —

DR. MAYS: Yeah, they did, they went to somebody’s house and everything to
talk to us.

DR. HAYNES: We tried to get data from Guam and Micronesia as well and it’s a
problem because we ended up calling the middle of our night to catch them in
their daytime, but you know coming along slowly, there’s a language sort of
differences too and all of that, we spent a couple of years developing
relationships on those islands to try to get data from them.

DR. STEINWACHS: Have you been able to make a trip yet?

DR. HAYNES: No, our contractor did.

DR. MAYS: But anyway, I think it might be helpful to have some background
about indigenous people, the native Hawaiians, some of the islands, the
American Indians, to understand the federal government and what you can and
can’t do. And also the infrastructure needs, you all said about functional
status, I didn’t have anything any different. The pharmacy record, we dropped
that, that was suggested by Carol and because we didn’t have any hearing
evidence or anything we dropped it but I would say you probably want to put it
back on the agenda. To me that seemed like, Jennifer, an easy thing maybe about
collecting data on race and ethnicity within pharmacy records but I don’t know,
I picked hard things.

DR. STEINWACHS: This was with CMS was the idea that you register for Part D
that we would capture race and ethnicity using the new classification system
and it did fall through the cracks but at the time there was skepticism it was
really too late is what the CMS representative said, that she was pretty sure
it was, and she was going to follow-up on it and I never heard back from her
and so that was my failure on that.

DR. HAYNES: Enrollment problems.

DR. STEINWACHS: Yeah, it was the enrollment for Part D was whether or not we
could capture that.

DR. MAYS: So those were the things that I had that I thought were what’s

MR. LOCALIO: I just want to comment on Vickie’s reminders. On the privacy
and confidentiality we had left it that we were going to have a joint session
with the Subcommittee on Privacy and Confidentiality so I think that’s still
alive very much.

On the National Children’s Study my information is that by the end of the
summer there will be some concrete information about that initiative because
they’re doing site visits now. And the dimensions of that study which may not
be as big as it was initially planned —

DR. STEINWACHS: Does everyone know what the study is? National Children’s
Study, pick up children at the time of the birth and follow them —

DR. VIGILANTE: They originally planned 100,000 maternal/child pairs to be
followed for over 25 years.

MR. LOCALIO: I think they’re talking about using the Vanguard sites
initially —

DR. HAYNES: Hopefully you guys have sent them a letter saying what kind of
demographic information you want them to collect.

DR. MAYS: We did.

MS. GREENBERG: Did you do that?

DR. MAYS: This is the second letter that I couldn’t find on the web —

MS. GREENBERG: Because you never finalized it.

DR. MAYS: I sent it —

MS. GREENBERG: No, the second letter was discussed, it needed work, it was
agreed it needed work, and remember we never received, we can go back and look
at the transcript of that meeting but we never received a final version of it.

DR. MAYS: Okay, we’ll discuss it, but I did and I asked Gracie to put some
information in it that I didn’t have.

MS. GREENBERG: Well, I can tell you that neither Debbie nor I received it so
if somebody else did it didn’t ever come to us.

DR. HAYNES: We all should get it in because there’s still open right now,
they’re finalizing —

DR. STEINWACHS: Let’s revise.

DR. HAYNES: They’re finalizing the questionnaire right now, I’m getting the
last minute requests —

DR. STEINWACHS: We’ll see where we are.

DR. HAYNES: Real quick, you need to get them in the next couple of weeks
because they’re in their final protocol development.

DR. STEINWACHS: That may be too quick for us, let’s see.

MS. GREENBERG: The second letter did not refer to specific elements, etc.,
is this the one that came before the —

DR. HAYNES: They want items, I mean they want the question that you want to
put in.

DR. MAYS: The second one actually asks for updates and it continued with the
concerns around the sampling.

MS. GREENBERG: That is what was discussed but we never received a final

MR. LOCALIO: Sampling, we don’t have to discuss it, that’s been settled.

DR. STEINWACHS: Well, why don’t we share a copy of that and see if there’s
anything here that we can follow-up or it may be too late.

MS. BURWELL: Well my interests are missed opportunities for racial and
ethnic data collection, here’s two examples that I’ve come across. When you
have infants born in the hospital you fill out the birth certificates but you
also fill out the Social Security enrollment card, you don’t get, you don’t
collect race ethnicity for Social Security at that point —

MS. GREENBERG: Isn’t it optional?

MS. BURWELL: Yeah, but that’s a missed opportunity that I think we should
explore. Another missed opportunity is in the SAMHSA DAWN data network, what is
that, Drug Abuse Waning Network, when you go into the emergency rooms to look
at the forms for drug induced deaths you collect information on gender but you
don’t collect information on race ethnicity, so there again there’s another
missed opportunity that I think we could get some good data on.

And just to say very quickly that a number of the recommendations that this
subcommittee has made goes to the Data Council and we have been working very
hard, the Data Council’s working group on race ethnicity has been working very
hard in trying to implement what we can of some of the recommendations in terms
of coding and editing race ethnicity, we’re looking at those across all the
data systems to see how comparable or not and try to make recommendations for
that. We’re putting together a data primer that we hope will be useful for
communities, researchers, students, etc., so that they can find race ethnicity
data and have a little bit about what its uses might be and find sources
outside the federal government as well. And lastly we’re working on an HHS
minority health data portal that would pull all of the HHS minority data, or
data systems that collect minority data, reports, etc., in one place so that
people could have that. So Vickie, all the hard work has not been in vain,
we’re working hard.

DR. STEINWACHS: Thank you, Audrey. Eugene.

DR. STEUERLE: I guess I’m in that classic role of being able to fill the
line and know what everybody’s sort of accomplishing and everything has been
said but not everybody has said it.

When I joined the broader committee the committee was called the National
Committee on Vital and Health Statistics and I thought we were going to spend a
lot of time with that committee discussing statistical needs —

[Multiple speakers.]

DR. STEUERLE: So later on I discovered that what is this National Committee
on Health Statistics, but then I talked to them, in fact I talked to June
O’Neil today because she’s on the committee, and she was complaining the fact
she didn’t think they were actually well situated by the way they were
structured, we raised these concerns, she we as a committee don’t even have the
ability, you as a committee, you being this group, to even write a letter to
the secretary usually, and she said we don’t address the broad statistical
issues either, we sort of have certain, within the statistical community we’re
all within our own little silos. And I don’t know that, maybe I’m wrong, every
time I’ve raised this broader issue Simon or anyone else he says well that’s in
the Populations Subcommittee but the Populations Subcommittee as best I can
tell only deals with a narrow subset of issues as well —

DR. STEINWACHS: Well, maybe it’s your chance to push us now.

DR. STEUERLE: So then the question is okay, what should we be doing or what
could we be doing, and there you face the dilemma is that all of us who work in
information fields, we know that actually there’s an infinite amount that could
be done and on the benefit side there’s an infinite amount that would be of
benefit which of course is to try to use Kevin’s scenario, the economic
scenario, well, I guess implicitly in our minds we do some sort of cost/benefit
analysis to decide what could be done. And so if I do that how might I think
about opportunity, I guess I think about them on two fronts.

One is well what is sort of some of the low hanging fruit, what are some of
the issues that all of us might put forward, some people have done this around
this table, here’s something that could be done, it might not even be that
expensive to do, why aren’t we doing it. And it’s usually, reflecting on
Russell’s comment, it’s usually actually more of a bureaucratic administrative
problem, it’s not in a silo, Census has huge amounts of money but they don’t do
it and then somebody else has a tiny bit of money and they can’t afford it.
It’s not likely anybody wouldn’t do it if anybody could think about doing it
but maybe it’s part of our mission to try to bring some of those to light.

Some of the ones I have, just my own ones, this goes back to the linkage,
it’s not just linkage of datasets that’s needed for population studies, there’s
all sorts of administrative data out there, if you think about all the cost of
conducting a survey, of collection, with administrative data you’ve already
paid the collection cost, the cost is now just figuring out how to get
resources to make use of it. An example that I’ve put forward for instance is
the linkage of Medicare records or Social Security records, it has been done at
times, I don’t know that a lot of people have access to that dataset, maybe it
needs to be done more, maybe we just need to figure out some ways to get more
people in to do it. The linkage by the way of Social Security with Medicare
records also could be matched up, there’s already some linkages, something
called the —

DR. VIGILANTE: So with the purpose of making Medicare, so you could risk
adjust for socioeconomic status of these outcomes, is that what you’re saying?

DR. STEUERLE: I guess in this case I’m looking at opportunity to have a
dataset that could be examined for a lot of issues, some of them might be
populations and some of them might be totally unrelated, I mean for instance
I’ve got a link that I’ve been working with the guy at Social Security whose
got access to Social Security records on something called the survey on income
which does have racial and educational data, and so we’ve been measuring things
like who gets what rates of returns on Social Security, how does mortality
effect those differences, but what we don’t have, the natural next stage would
be how about linking in the Medicare records and let’s see whether we can’t get
some sense of the extent to which Medicare benefits are, I mean it be partly
for people to have equal access to them which is sort of the way we ought to
address the population, but it might also just be to what extent are people
paying for what they’re getting and there are just all sorts of issues that
could be done with that type of administrative linkage.

And I’m sure people around here could think of a lot of others with Medicaid
or veterans or all these sorts of issues, just if we could figure out some way
to link together those administrative datasets. I want to indicate that this is
often a legal issue of A, can you even get the agencies to say they can do it,
and B, if they do do it then who has access to that data to be able to do it.

Another one that’s been very high on my agenda of short term, there’s this
big debate about well we measure outputs but we don’t measure outcomes and we
can’t measure outcomes. We don’t even measure inputs well and when I go to the
Social Security actuaries, I go to other groups and I say look, we keep saying
costs are going up eight percent a year, who’s getting this money, is it an
eight percent increase in labor, is it an eight percent increase in the
payments that are being made, I mean it’s mainly labor costs probably in the
health sector, where is this money going, we don’t even have that input, those
measures of inputs, or what I’m going to call the input/output matrix, you
should be able to at some level like your economic analysis does, you should be
able to say if costs are going up eights percent a year it means we’re getting
this, we’re getting, I realize it’s crude but we’re getting X number of more of
knee operations and lab, number more doctors, payments to doctors, there’s some
ways we get this with the data that Kathy Leavitt does on outputs which is the
national, total national health care spending, we don’t have a measure on the
inputs, where is this money going and or even these projections we’re making
for the future, are they realistic given the number of doctors coming along —

DR. VIGILANTE: Isn’t that at the plan level? Isn’t that data at the health
plan level?

DR. STEUERLE: Well, there’s some data in a lot of different places, I don’t
even know how one fully puts together —

DR. VIGILANTE: It’s all fragmented.

DR. STEUERLE: It’s fragmented, it has big gaps, there’s big gaps, but some
of it might be Census, some of it might be just surveys of what doctors are
being paid, the number of doctors, I mean it’s fragmented. Nobody has the task

[Multiple speakers.]

DR. STEUERLE: Nobody has the task of actually worrying about that. Other
ones I think of are mostly along these lines is the cost of HIPAA, I mean I
think it’s almost a crime that John has to keep asking at these meetings for
what is a tiny, for this tiny bit of data that some of us know, we could sit
down a day and we could answer 70 percent, not 100 percent, we could answer 70
percent of these issues.

But there’s the next level question which is is anybody gathering data on
the cost of HIPAA and whether it’s being administered, is it being done well —

DR. VIGILANTE: Somebody decided, actually a paper in the Archives of
Internal Medicine, Annals of Internal Medicine, where they calculate, added
$5,000 dollars per year to a research study but you’re right, it would be an
interesting —

MS. GREENBERG: I would say that’s not really a populations issue —

DR. STEUERLE: But again, you’re missing my first comment which was where do
the statistical issues get raised, I keep telling all statistical issues get
thrown in populations and then I come to populations and no —

[Multiple speakers.]

DR. VIGILANTE: It’s a sort of orphan issue for a committee whose name
suggests that’s what its core —

DR. STEUERLE: But our name suggestion doesn’t say, I mean we set up our
committees don’t we? I don’t understand —

DR. STEINWACHS: And we have some control potentially over our mandate.

DR. STEUERLE: So one thing is not just to get my list but what are some low
hanging fruit either because we really need this information or because in the
case of administrative data you ought to have it. Another approach seems to me
is also to start asking the question which is implicit in some people’s
comments, I mean what are some of the really policy relevant decisions that are
going to be made with people making the policies are actually going to be
wanting this data and I’ve seen this over and over again, I’ve worked in policy
all my life, with people all of a sudden make the decisions and then they run
to the bureaucracy and say okay, what data do you have, give it to me in 20
minutes and I’m going to make my decision.

In some cases we know certain things that are coming along, for instance in
the area of disability, I mean you’ve got all the sort of Social Security
Administration that says basically their disability insurance system is broken,
it’s largely broken, not just administratively, it’s broken because we have
absolutely no ability to get the disabled back to work, at least we’ve not
reflected it, once you’re in systems like DI(?) you don’t go back to work.
Well, there probably is a related health issue that we should be examining
along the same way, it’s a hot issue, it’s going to be coming up I think in the
near future, maybe we should be figuring out, I don’t know, maybe there’s a way
to take that policy relevant issue and figure out a way to figure out what data
needs to be gathered.

Or if we’re talking about electronic health records there may be things that
we’re gathering, that we’re not gathering, we’re doing a good job of convening
people to ask them what often ends up to be anecdotal information but I don’t
know whether we’re doing a good job of surveying the field, maybe we are and
maybe we’re not, but that’s a hot policy issue. We know that a lot of policy
makers are getting more interested in it, if they’re going to start asking
questions is there something we could get out of, in some cases it’s a survey,
you could survey 100 people and get some information, I mean surveys don’t have
to be often very elaborate, are there things there that we’re not, that we
could be doing through surveys.

I could go on but it seems to me that one approach might be to ask what’s
sort of a hot policy issue in a health related area where the gathering of more
information might really help inform the decision making. So I’m asking some
very broad questions but again my two ways of tackling it is sort of what’s in
the opportunity set and then what’s actually coming along in a policy sense
that we should be thinking quickly about gathering data to inform the

DR. VIGILANTE: Medicaid, the boys have cut I think $10 billion dollars out
of the budget or something, it’s a huge amount of money typically impacting the
populations that we’ve spent a lot of time writing a report about, but also the
long term care issue that’s wrapped up in the aging population. And then tie it
to the benefit side, who heading toward long term care would have the assets to
pay for it except that they’re hiding them elsewhere, are there predictors or
should we be measuring that population or being able to model the idea of,
linking that to Social Security I want to say who theoretically is above income
level who should be paying for long term care themselves, or getting insurance,
because the system as it is today is financially, it’s fiscally untenable, and
to have all us, all Medicaid nickel for long term care is going to bankrupt the
system and you won’t be able to serve the populations they should be serving,
so that’s a bit of a expansive issue but I don’t know if there’s anything there
in terms of data we should be tracking for informed decision in that

DR. SCANLON: Well when Gene mentioned this this morning I guess I was
thinking, I mean respective of the health service research or maybe we could
develop a mentality that we’re archeologists, I mean we get a fragment we’re so
happy about it that we can spin a story about civilizations sort of out of it,
because we do know something about the income and assets about the elderly,
both the current and potentially sort of next generations, we do know something
about the patterns of long term care and spend down, etc., and so there’s a
question, and I agree with Gene in the sense that we really should improve what
we know, there’s a question of are the things that we do know and where is the
best place to make improvement and that, that wouldn’t be consistent with the
idea of let’s do something easy because there’s just an incredible amount of
money that is being spent on health care collection and we’ve got to figure out
sort of what’s the best place —

DR. STEUERLE: The benefit cost framework for doing it easy is the low cost
without reflection on benefits, there’s some stuff that’s high benefit but high
cost and there’s some stuff that’s low cost and very little benefit, you really
have to look at both sides.

DR. STEINWACHS: Another area which we read in the press everyday is about
what’s happening to the benefits of retirees and it seems to me if you said is
there a national information system it would be good, I’m not sure —

DR. SCANLON: There’s a survey that’s done by, funded by the Kaiser
Foundation, done every year, looking at what employers are doing and looking at
particularly retirees and the question is should we go further —

DR. STEINWACHS: Because the other side of that is the population side, I
mean the employer you get a sense of what that really means in impact which is
the stories you read in the newspaper every so often, you read about a person
and I don’t think on the IHS survey, things like that, we don’t really know
much about what’s happening around retiree benefits for those people who would
be in retirement —

DR. SCANLON: We do ask, they do ask, I mean several of these surveys ask the
people who are retired and what’s your source of health insurance, and so we
have been tracking the fact that even though employers are dropping for future
retirees but often keeping coverage for current retirees so those numbers have
been dropping more slowly then the numbers —

DR. STEUERLE: But without debating what are the gaps here the question is
should we be doing something to try to figure out a way, a systematic way of
identifying the gaps. Bill may know, he may have done research on that, an
item, and he knows a gap, and we could put that on a list somehow, but the more
systematic way we might want to be tapping people who work in populations, and
there’s different types of research here too, the medical researchers often
think of research a lot different then say the health economists but within
these fields who really identifies some very large gaps and what are they and I
don’t know that we’ve systematically thought about it.

MS. MADDANS: The forums that I talked about had been talking about exactly
these issues, especially for the up and coming retirees and this idea as the
baby boomers age what are they going to look like versus what current retirees
look like so that’s another group that you could work with, the Forum on Aging
Related Statistics which just meant last week to think about their future kind
of, what kind of work do they want to do and that’s all the statistical
agencies so you’re bringing in not only HHS but Labor, it’s the whole range,
it’s 22 members or something. So it’s a good meeting point for some of these
issues but of course you’re talking about the whole range of possibly what you
could do with data, it involves a lot of people.

MS. GREENBERG: Isn’t there one on children?

MS. MADDANS: There’s also one on children.

MS. GREENBERG: I was just going to say I think this really does speak to the
importance of moving forward the agenda of having a joint meeting with the
Board of Scientific Counselors because the board is responsible for, it’s a
scientific board for NCHS, NCHS is the principle health statistics agency and
in addition to collecting some of the flagship surveys, or data systems, vital
statistics and surveys, etc., also there’s quite a bit of knowledge at NCHS
about data being collected by others and all of that has to kind of be brought
together in Health U.S. and other activities.

But obviously, but you’re right, that I mean, and June is right, that it’s
not really the board, I mean the way we kind of envisioned this when Ed Sondik
came and talked to the committee about setting up the board, because initially
people thought well it’s really, why do you need the board when you’ve got
NCVHS and he basically threw it back at the committee, he said if you’re
willing to serve the purpose, the purposes that I feel I need, which the
committee did used to serve to some degree in the past, particularly the
pre-HIPAA but even before, longer back then that, fine, but if you’re not then
I need some group that will but I’d like to work closely together.

And I think there’s even been some things written about how the committee,
this committee would, the two needed to work together and this committee would
address more of the kind of overarching or department wide or even government
wide health statistics issues whereas the board would focus more on the actual
NCHS programs. But we talked about even having members on each or having joint
meetings and we do have the liaison function but to me this is, if you were to
have a joint meeting I think this is exactly the kind of discussion that would
be very productive and you would have, first of all you’ve got more resources
and you’ve got both committees and also rather then like having testimony or
bringing in other people at that point I think it could just, you could begin
to develop some of this and to see what might be done by the board, what might
be done by the committee, what might, where might there be organizations, I
mean Jim mentioned this morning about the Data Council is now pursuing some
specific I’d say health statistics issues, issues related to insurance and
coverage, he named all five of them. And to get sort of a sense of whose doing
what and where are the gaps I think would be a very productive joint project
which could start with some kind of a joint meeting that would need some good
planning so that it was useful.

And that I would say, I know that’s under the executive subcommittee, they
will look to the Populations Subcommittee, I would say this in front of Simon
if he were here but when he looked at this book that we were so proud of this
morning about health statistics he said yeah but with a title like that who’s
going to read it —

— [Laughter.] —

— I took objection and I said well —

PARTICIPANT: You know the problem, it should say vital and health
statistics, then it would be okay.

MS. GREENBERG: But in any event I do think that is a role of the —

DR. STEINWACHS: It could have vitality in big letters —

PARTICIPANT: Viagra and health statistics.

MS. GREENBERG: I mean if a group called the Commission on Systemic
Interoperability can think it’s going to prepare a sexy report then anything is

— [Laughter.] —

DR. STEINWACHS: Let’s talk about next steps because I think what we’ve done
here, at least I found very useful to get everyone to sort of lay out and we
got a list and so there were a couple of thoughts, one was we’ll get the
minutes and get the minutes out which has a list but maybe the next step is to
try and get a conference call scheduled because this will give a chance for
each of us to think about it some and it is sort of saying well what is the
most immediate next agenda item. There can also be a couple, maybe sometimes
some things running a little bit in parallel, I think there’s this low hanging
fruit idea, is there something out there that we could really tackle, at the
same time a longer term sets of issues and so I think some of the things that
you’ve raised, Eugene, and others, some of these are longer term more complex.

Well, that doesn’t the mean the committee can’t start on it but it has to
realize that that’s probably much like the race ethnicity report and it that
turned out to be a four year effort and so it means that we’re starting
something that we expect people who will come after us to continue on —

MS. GREENBERG: If we could do some interim letters from that report so we
would be getting things out but the definitive report took that long and that’s
not that unusual.

DR. STEINWACHS: So I think a great point, Marjorie, is that you want
intermediate products from the longer term efforts too, all I was thinking is
that both of those ought to be on our radar screen because I see some
excitement sort of around the complex issues mainly because we like to tackle
complex things, at the same time those are big undertakings. The big issues
need to be addressed by this group by as well as how can we fix some things
that really make the system better in terms of the ability to report health

Bob, Justine, I don’t know, do you want to say a couple words before we end
about sort of where the Quality Workgroup is in getting their agenda together
because there is overlap here but there’s not total overlap, and since we did
say that we’d do something about trying to keep those two visions in mind.

MR. HUNGATE: We can both say something, I’ll start. We’ve got 15 minutes
tomorrow morning to prepare a good answer to your question —

DR. STEINWACHS: I thought you had the answer and you were just going to give
it tomorrow.

MR. HUNGATE: Well, I think we had a marvelous meeting and really came away
with the feeling that there needs to be articulated a clear vision of the
intersection between health improvement and information technology. And
articulating that is probably an appropriate charge for the Quality Workgroup.
Now that’s going to be very much of course I think on individual things. It
seems to me that the complement to that is really almost a separation as AHRQ
has it, the disparities report and the quality report, where they’re saying
there are two ways we can address the improvement of population health, we can
do it by identifying disparities that exist and then improving the
disadvantaged group, or we can go about trying to move the whole system
individual by individual and those are kind of two approaches that separate the
health care system and the population health agenda. But those should be
synergistic, in other words you attack from the population view which should
then feed into the individual view so that they both move.

DR. CARR: No, I think that Bob surmised correctly, the details of how we
proceed, we’ll try to get a little bit tomorrow, but we focus on —

DR. STEINWACHS: And so as there are things probably, the agenda begins to
focus in the Quality Workgroup I was thinking we ought to carry that back to
this group just so if there are ways that we can maximize the synergy —

MR. HUNGATE: Synergy is the big game —

DR. STEINWACHS: Is there anything else right now? Any suggestions? We are
sort of end of our time and I’d like to honor people’s time commitments. I will
report back then tomorrow about sort of our beginning steps at agenda setting
here, if people are agreeable we will get a conference call. The nice thing
about call in conference calls, you can be on vacation and do that. Kevin is on
vacation, he’s spending his vacation with us.

DR. VIGILANTE: What’s better then that? It doesn’t get any better.

MR. HUNGATE: I tell you, I thought that was a good deal when I was in Spain,
I called in to the executive committee, I’m still trying to get paid back my
$20 bucks for that phone call, they don’t know how to deal —

DR. STEINWACHS: Bob, Bob, this is donated service —

— [Laughter.] —

DR. STEINWACHS: And again I want to thank Vickie for not only serving on the
committee but continuing to serve to carry this to culmination because we
couldn’t have done it without you —

— [Applause.] —

DR. STEINWACHS: Audrey and other staff, I know Miryam, it was a huge staff
effort to get this together, the appendices and everything, and that was not a
small undertaking so I very much appreciate that. Thank you all and see you,
some of you tomorrow morning —

MS. GREENBERG: Can I just say something about this because it’s sort of
coming back to me, this will only take a second, but that letter about the
National Children’s, it’s my understanding that we were supposed to get another
version of it which may be got lost in cyberspace and then it was to be
finalized by the executive subcommittee —

DR. MAYS: Only by the chair —

MS. GREENBERG: All right, then the chair who was John Lumpkin who is no
longer the chair, but I guess that falls then to Simon, so if it’s only —

DR. MAYS: I’m happy to send you the email because going through tons of
emails to find stuff for this I actually saw the email so I’m happy to send you
the actual email.

DR. STEINWACHS: Why don’t you send it to me too?

MS. GREENBERG: If that’s the case fine, but we need to, the final arbiter as
I recall was, I thought it was the executive subcommittee, I think you’re
right, it was the chair.

DR. MAYS: It was just the chair.

MS. GREENBERG: And I don’t think we’ve gone through that process yet.

DR. MAYS: No, because there are two things missing that I asked Gracie to
give, to put into the letter because I couldn’t find the one on —

MS. GREENBERG: Well maybe you sent something to Gracie and she didn’t
respond, I can’t —

DR. MAYS: But that’s what I did, I sent it here because it was two things
missing —

[Whereupon at 5:30 p.m. the meeting was adjourned.]