[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

Subcommittee on Populations

March 3, 2005

Hubert H. Humphrey Building
Room 305A
200 Independence Avenue, S.W.
Washington, D.C. 20201

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: Introductions

DR. STEINWACHS: I’m Don Steinwachs, it’s a pleasure to be in this new role,
I do feel this heavy burden I keep talking about following on behind Vickie who
has been stellar but she’s going to remain for a while to coach me I think, is
this coaching?

DR. MAYS: I’ll move from being a psychologist to a life coach.

DR. STEINWACHS: I need a life coach, I need a life manager and a life coach
to go with it. I thought what might be helpful, and we’ve done this before, is
to sort of go around, both introduce ourselves and just say a few words about
particular areas of interest because we have new members of the committee and
subcommittee, and then I thought we would try and spend the time we need to
talk about a couple of recommendations that were not part of the presentation
of our upcoming report and talk about anything else about that report.

Then I know Simon is going to try and join us for a few minutes to join in a
discussion which is really the latter part of the agenda I had about sort of
what directions do we want to go from here and Bob Hungate and I have talked
some about trying to have more complementarity between this committee and the
Quality Workgroup which is a subcommittee of this committee, and at the same
time carry on some of the areas that we think are important from where we come
from. So I’m not sure we’ll get through all that but it seems to me that is
sort of the agenda for today. But if there are other things that we ought to
try and talk about now is a good time, well I think the chair ought to get to
go last, right? So, Vickie, do you want to say a couple things?

DR. MAYS: Okay, I’m Vickie Mays —

DR. STEINWACHS: The coach.

DR. MAYS: — leaving shoes or whatever I’m doing today, leaving shoes or
something. But I’m formally trained as a clinical psychologist with also
another degree in health policy and health services research and I direct a
center on minority health disparities at UCLA.

MR. LOCALIO: I’m Russell Localio, I’m from the University of Pennsylvania
School of Medicine from the Department of Biostatistics and Epidemiology, so I
analyze data for a living. I’ve been on the subcommittee for two years with
Vickie and I’m sad to see Vickie leave but I’m very thankful that she’s given
us some good ideas and challenges that we have to pursue.

DR. BREEN: I’m Nancy Breen, I’m with the National Cancer Institute, I’m
trained in economics, I analyze data for a living and also collect data for a
living. And I’m particularly interested, the area I work in is mostly cancer
screening but I’m particularly interested in health disparities and racial
ethnic differences, socioeconomic differences, geographic differences, why
everybody doesn’t get everything they should.

MS. PAISANO: I’m Edna Paisano, I work at Indian Health Service, I’m the
director of the Division of Program Statistics, so my office does the majority
of data for Indian Health Service. And of course I’m particularly interested in
data for American Indians and Alaska Natives.

MS. GRANTHON: Good afternoon, my name is Miriam Granthon, I’m with the
Office of Minority Health, and have been staffing the subcommittee for a year
and a half now. And also have information about the mental health NCVHS report
that was done in ’91 and minutes from the first two meetings if anyone is
interested, particularly new members.

MS. MCCALL: I’m Carol McCall, I’m with Humana for the third time so it’s
been my third tour of duty, and I’ve a done a variety of things, a little bit
about me very briefly, I’m an actuary, that’s my background and training. I
have spent time with outside of the industry with electronic prescribing and
electronic medical records. I’ve also had some unusual experiences running
pharmacy management and PBMs. What I’m responsible for now with Humana is I run
our Center for Health Metrics which covers a variety of things, so that’s
everything from clinical program design, the metrics that measure quality and
outcomes and the impact that they have. We do a lot of focus also on consumer
behavior which is to say how do you engage consumers using various
psychological techniques for the things that happen outside of the clinical
setting that they need to do around chronic disease.

We also do a lot of measurement of trend and emerging trends within health
care and health care costs, paying particular attention to the impacts of
reimbursement strategies on physician behavior, hospital behavior, and then how
that ripples through into how it affects care. Kind of a third area of focus
for us this year is also the emerging work around I guess what I’ll call for
lack of a better term efficiency and effectiveness for both providers,
physicians, and hospitals, so a lot of the metric sets that are being
developed, some interesting work coming out of RAND that we’re paying attention
to, a lot of the work from Leapfrog, some other groups, so looking at some
early measures of efficiency and effectiveness and then what I’ll be doing also
then is linking that back around to other quality measures and impacts from
clinical programs, things like that. So kind of a broad sweep fairly quickly.

DR. STEINWACHS: We need you, Carol.

MR. HUNGATE: Bob Hungate, my current label and advocacy position is
Physician Patient Partnerships for Health, I’m a graduate of Hewlett Packard,
31 years at Hewlett Packard in 1991, and since that time I’ve really been a
health policy advocate. I ended up in this position largely I think just
because of the specific kind of things I did at Hewlett Packard, I started out
as a cost accountant, learned the numbers of business and keeping track of what
goes on, I moved into managing our marketing function, and worldwide for
medical electronics. So I learned the medical system from the outside trying to
sell to it. And the third piece was running a business within Hewlett Packard
of hospital supplies where I learned the disciplines of quality improvement
which again is a measurement kind of a game. Finally I came down to Washington
on health policy for Hewlett Packard and was here for six years, trying to
straighten out the health care system but, I’ve since learned it really is a
life long occupation. I’ve taken a system view and tried to see how we use
measurement that informed the physician/patient dyad in ways that worked to
make the whole system work better, so that’s what I do.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics, general
interest in evaluation, my background is coming from accreditation through the
Accreditation Council — in Chicago, having come in federally through HRSA,
thus my keen interest in the under served and some of the special populations
and also NIH women’s health.

MR. W. SCANLON: I’m Bill Scanlon, I was trained as an economist so long ago
that health was a very small share of GDP, there were no health economics
courses —

DR. STEINWACHS: So Bill you’ve been successful, you created a whole

DR. W. SCANLON: — too bad I didn’t invest. I did get involved though in
health a relatively long time ago, about 1975, at the Urban Institute as a
health services researcher and then at Georgetown using a lot of data doing a
lot of work with the MNHS(?) surveys as well as sort of HCVA, sort of data
files in the state Medicaid files. Ten years ago I went to GAO on a year’s
leave, ended up liking it a lot and staying and became the director of their
health care work and we had a unique sort of relationship with data in that we
always had to have the most current information possible because the Congress
thinks that anything that’s over a year or two old is completely just
historical and of no use. But also we had incredible access to information
because you can’t tell GAO no if you’ve got a federal dollar coming into your
organization so we would get, we would have some information that others
couldn’t have.

I left there about a year ago and am doing sort of a variety of different
things, one of the things in addition to this is I’m on the Medicaid Payment
Advisory Commission and I think there’s a strong interest there in some of the
same issues that you’re facing here.

DR. CARR: I’m Justine Carr, I think like everybody in the room I have ten
different identities, one is I’m a hematologist, I’m also in the department of
surgery at Harvard Medical School, my clinical role at Beth Israel Deaconess in
Boston is as director of health care quality where I work on areas of safety,
quality, and also clinical resource management cost impact. And with this I’m
involved in using existing datasets to develop metrics from broad based systems
metrics to individual programmatic, I work closely with the surgeons, cardiac
surgeons in particular, doing their risk adjusted datasets.

MR. HITCHCOCK: I’m Dale Hitchcock, I also analyze and collect data for a
living, about 20 years worth of it or so, the National Health and Nutrition
Examination Survey at NCHS, the HANES survey. For the last say ten years or so
I’ve been involved with Jim Scanlon here in the department working on data
policy issues and if I work with Jim long enough I may understand what data
policy really is, it’s going to be in a nut shell but right now, so I’ll pass
it on to Virginia.

MS. CAIN: I’m Virginia Cain, I’m the deputy director of the Office of
Behavioral and Social Sciences Research at NIH and it’s an office within the
office of the director and we have responsibility for behavioral and social
science across all the various institutes at NIH. My own training as a
demographer and so I have a special interest in data collection and the issues
that come under this subcommittee.

MS. GREENBERG: I’m Marjorie Greenberg, I’m the executive secretary for the
committee so I’m interested in all of the subcommittees and all of the
workgroups and the full committee but I do —

DR. STEINWACHS: And we do appreciate that you come to this one.

MS. GREENBERG: I do work for an organization that collects and analyzes data

DR. STEINWACHS: I thought you just worked for us, we work for you, maybe
that’s it.

MS. GREENBERG: This is part of my day job but like Dale I’ve been trying to
explicate what data policy and data standards are to not only to myself but to
my peers and superiors over the past about 30 years, and I actually think we’ve
been making a little progress, Dale, so I’m very much involved in health data
standards work but also always with a population focus.

MS. BURWELL: I’m Audrey Burwell from the Office of Minority Health, a senior
public health advisor for minority health, and I also used to work at a data
collection agency but most of my federal career has been in directing
extramural research activities.

DR. STEINWACHS: You mean giving money away?

MS. BURWELL: Giving money away.

MS. JONES: Catherine Jones, CDC, National Center for Health Statistics and
staff to the committee.

DR. STEINWACHS: I’m Don Steinwachs and I’m trained as an engineer, I got
lost quickly into an interest in health systems and health care delivery and
landed in a school of public health so Bob, I’ve been public health 42 years,
that’s because no one would ever offer me a job anyplace but Hopkins I think it
was, they had to take me off the streets so I wouldn’t embarrass them. I chair
the Department of Health Policy and Management and direct a health services
research center, and half of my life is in mental health because we have a
joint mental health center between University of Maryland and Johns Hopkins,
the two Departments of psychiatry are health services research center and
department of mental health. And I figure if we could fix health care delivery
for the severely mentally ill it would be fixed for everyone in this country,
so that’s my theory. Now whether that works or not I don’t know but it’s worth
trying, it’s worth trying. The other interpretation is I try and protect my own
personal mental health and investing in that preventive strategy.

The other half of my life is pretty much been interested for the past ten
years in trying to use patient reported outcomes and integrate that with other
information to look at quality of care and to see if a patient as more of a
resource in this process and so I’ve done work in asthma and other conditions
and have been very much involved in trying to promote evidence based practice
and always fascinated as we talk about decision tools and so on, how groups the
physician see evidence as well as the willingness to adopt evidence in
practice. So I came to this group with both an interest from the public health
side and sort of population health and population quality of care as well as at
the more institutional level, organizational level, so like Bob and Justine,
myself, we’re all in the Quality Workgroup, is there anyone else here on the
Quality Workgroup? The three of us, and the Quality Workgroup is a subcommittee
of the Population Committee, I’m sorry, a workgroup, if Marjorie weren’t here
I’d never get this right, because I wanted to up us to being committee and make
that a subcommittee, aspirations of power.

Agenda Item: Follow-up to Committee Discussion
of Recommendations for Capturing Data on Racial and Ethnic Minorities

I think the first item on the agenda if everyone is agreeable is to deal
with the recommendations and the feedback we got in the general committee
meeting around the Populations report and in general I thought there was quite
a bit of enthusiasm and made knowledge that at least for me I know was a
learning curve trying to learn better how to write the right kind of
recommendations and I give Vickie all the credit for actually having done it
and that their action was specific and they draw on the testimony that we got
and the testimony spanned I guess what, two or three years?

DR. MAYS: Yeah, 2002 to 2004, I don’t think we had in 2005.

DR. STEINWACHS: I think I joined the committee in 2003, caught not the very
first interviews but the next set. And so one of the interesting challenges,
each of us joins these committees at different points in time with different
history and we sort of try and pick up the ball and carry the ball as we’re
moving, at the same time identifying new balls that need to move and new
directions. But it is very important to bring closure to those productive
activities and what Vickie has led and this has committee has done I think has
really been groundbreaking work in trying to deal with the capture and use of
information on racial and ethnic groups in this country and how do we produce
information that’s useful to all those groups. So let me turn it to you,

DR. MAYS: Do you want Leslie to introduce herself quickly?

MS. COOPER: Leslie Cooper, I used to be with National Institute on Drug
Abuse, I’m now at National Cancer Institute.

DR. STEINWACHS: Welcome, great to have you here.

DR. MAYS: Because we have new people I’ll just do a quick like why did we do
this, because it was a while ago and I think it’s important for people to
understand like well why was this so compelling at the time. When we began this
work it was back in 2001/2002 I think and at that point in time the Census had
just come out, there was questions in terms of for NCHS data and other data how
in terms of the changed categories in race and ethnicity, that there would be a
bridging between old data and new data, so there were a lot of questions and
concerns at the time. And so at our first hearing we started with many of the
NCHS datasets that were the population based datasets to try and find out what
their thinking was, where they stood on these issues, and we also wanted to ask
are the only questions that we should be concerned about if we’re interested in
health disparities, because that was also the issue at the time, on race and
ethnicity, what are some of the other variables that we need to be collecting.

So that’s kind of the background that we came into this with and I think
rightly so there’s some of those issues which I think over time have solved
themselves such as some of the methodology issues around bridging from old data
to new data, so a little bit less concern about that. But there’s still left I
think a number of issues that the committee over the course of several hearings
has continued to see, not only people who were using datasets but people who
the data is being collected on wanted to have a voice in what they thought
would be useful data for them as consumers and as individuals who are running
community based organizations. That kind of spans like three years in terms of
quickly why and where we are.

We began to write a report, I think in terms of writing this report it was
starting to be on population based data and then as we moved along we’ve
decided to include some of the material that has come from other hearings, even
though it really focuses on the collection of data by the federal government
and population based statistics. Our report has been fairly long because part
of what we also did was to go back and look at well how many times have we
recommended what about some of these issues, so we did a little bit of a
history of looking at earlier recommendations or whether or not some of those
recommendations had been enacted. And what we found is that there are quite a
few which were still very relevant even though they were five, six, seven
maybe, or more years old and that’s how we got to having 69 recommendations
because we went back and found that there were things that we felt were very
important that had gone to the Secretary or to various other HHS, various other
agencies within HHS but had not been acted upon.

But it was just too much for us to try and deal with all of those so through
a period of time what we’ve tried to do was to come up with what are the major
overarching issues and that we were able as I talked about today to really kind
of get down to three areas. And under those three areas, instead of talking
about them as recommendation, we kind of have referred to them as strategies.

What you have in your packet is what the recommendations looked like a long
time ago, when you last saw them, and that’s the thick document, and the reason
we put those in is because what we would like you to do, we’re going to
schedule a conference call to ask you to do this, what we would like you to do
is to go through it and see if there’s anything that in the cut and slash got
left out that you think is critical.

Now there are, I would like to bring up something that I do think is
critical that I’ll put on the table today just so that you can think about it
but I think that’s the first piece of business is to go through and see if
there’s anything that you want back in, it has to kind of make sense in terms
of it going back in. Or, what I want to suggest is that there may be some
things which are better handled as a letter as opposed to trying to cram it
into this report. So if there’s something in here that’s left out and it
doesn’t seem to fit well but it is a burning issue I’m going to suggest that
that then be given to you all to think about the construction of a letter.

Like I began to wonder today when we were talking about the American Indian
whether or not that issue should be separately pulled out because it may take
some context to it and it may be better done as a separate letter. Because a
couple of the questions that were raised I do think we need to do a little fact
finding about but it also may require that in order to do it well that you need
to go beyond just calling and checking a fact, it may be that as we had the
hearing before that you may need to talk to a couple people to be able to
finish that off. So I’d actually like to put that on the table as something to
think about as to whether or not that should stay in or come out, I don’t think
we need to make the decision now but I think this is what to think about for
the conference call that we’ll set up.

The other item that has been pretty salient to us and in the flash and burn
it ended out but I’d actually like to put it back in is the issue of these
periodic surveys of groups that at the national level usually don’t appear in
significant enough numbers for us to have enough data, or to do complex data
analysis. So for example there will be a national survey and we will have a
limited number of American Indians, Alaska Natives, or a limited number of
“Asians” and really what we need is to have data on subpopulations.
So one of our earlier recommendations was to consider requesting that the
Secretary really try and lay out a plan for ways in which on some rotating
cycle to figure out how to collect data on these various groups and to revisit
them every so often. Now that’s a major budget item and that’s kind of why it
got slashed and burned I think here but I do think at some point we have to
decide what we want to do about it.

MS. GREENBERG: Wasn’t that recommended in the commentary? I think there have
been some recommendations from the committee, coming from the subcommittee —

MR. HITCHCOCK: — as we speak almost the strategy group is talking about
ways of doing exactly that, Vickie, targeting different populations and
periodically revisiting those populations, it maybe even instead of having HIS
look at small groups of blacks or Hispanics like Puerto Ricans, Cubans, Mexican
Americans, etc., just barely because they’ve been doing each of these small
groups. Another possibility we even thought about was having other surveys,
there was a few also to look at these groups so it could be like the Year of
the Rooster or something of that sort, ten groups that were being surveyed as
part of the HIS that were sampled or locally surveyed could be addressed the
same way as part of the SAMSHA household survey on drug abuse, that sort of
thing. I think it’s really great opportunities exist to do this stuff so I
wouldn’t feel badly at all, I’d put a recommendation like that back in because
it’s actually happening.

DR. MAYS: Marjorie I think the point is that we did comment in a limited way
about it in the commentary and said we would come forth with a bit more so what
it would happen is if you put it in you then could put something in in the body
of the report. The reason we’re not looking at the body of the report is
because the report is very long and we want to cut it, once we decide on the
recommendations and then we will match the information to that but otherwise we
have extra, a lot of stuff that can hit the cutting floor in terms of trying to
bring a report to a smaller size. I mean I think that’s great, I mean it sounds
to me like it might be better to do it so that it’s just yet another source
that’s coming forth to support what it is that you all are talking about in the
Data Council.

MR. HITCHCOCK: Last we were talking about sort of pooling resources for this
so it wouldn’t be just something that NCHS had to do, they’d put up a share and
those other agencies would be tapped at some level as well, I mean that’s one
of the possibilities that exist to conduct these automated surveys.

MS. BURWELL: It’s on a pretty fast track actually because in 30 days we’ll
receive from the Data Strategies Workgroup three, five options, and the ASPE,
the assistant secretary for planning and evaluation and the new deputy
assistant secretary for minority health will be making some policy
recommendations so that these will be worked into the FY ’07 budget.

MR. HITCHCOCK: The other we’re doing that’s related to this is the
Department of Interior has jurisdiction over a set of territories and the
Virgin Islands and they’ve been asked to look more at the health of the
populations that they have jurisdiction over and they’ve come to HHS to see how
we can help them with some of our surveys and the sort of inventory that we do
have which is not much at the moment but we’ve got some data on those islands
and we’re working with Department of Interior now to come up with ways that
they could collect more and better data, better data certainly, on people in
the islands.

DR. STEINWACHS: Dale, doesn’t this committee need to meet in the Virgin
Islands? Marjorie stopped us the last time we were heading out to the Pacific.

MS. MCCALL: I have a question, it sounds like there is obviously a lot of
activity in different areas and if there are general knowledge of activities in
one area around collecting data, surveys, and different data elements, of
activity in one area versus another?

MR. HITCHCOCK: The Data Council has a pretty good handle on that but one
thing came up in our workgroup yesterday, Virginia, we’re not sure that we have
a real good handle on some of the specific population surveys, no, not surveys,
political studies that are done at NIH, everybody knows Framingham, people know
Pima Indian diabetes studies, people know maybe the Jacksonville heart study
but there are other ones, big ones that we don’t know about, the Data Council
doesn’t really address these.

MS. MCCALL: The reason I ask is that the idea that I heard when we first
started this part of the discussion which was the general strategy of why don’t
we go have a baseline and a common set all the time and then every once in a
while go deep on different areas. Other people are doing, pursuing that type of
strategy but don’t know about okay, this is the time we’re going narrow and
deep here, there may be redundancy or they may be doing something else that
could intersect it and leverage it in a particular way if they knew. So if
there isn’t general knowledge we could make a recommendation about certain, I
don’t know what the right term is, sister agencies, making that publicly known.

And then the other question would be is there general sharing of data

MS. GREENBERG: Within the department do you mean?

MS. MCCALL: Across whatever I described before, is it allowable, is it
feasible, is it even relevant?

DR. BREEN: I think as part as this first issue what we’ve been trying to
figure out is how could that be coordinated and that maybe that could be done
through DHHS because it would very much like to work not only with the public
sector but also the private sector. And then secondly in terms of the sharing
data, the data from the public sector is generally released publicly but it’s
not always released real quickly and that’s been an issue. So that’s something
that we’ve tried to promote and recommend in this committee and there’s a
number of recommendations to that.

There’s also an enormous amount of private data collection that goes on in
this country and there’s a fair amount of redundancy with that in some of the
public data collection but there’s no way really to move that money from one
place into another place —

MS. MCCALL: — just within public domain —

DR. BREEN: — but there’s a whole lot of data collection that’s going on and
then there’s a whole lot of private data collection that gets, ends up being
proprietary so people have to pay an enormous amount of money for it. So if we
could smooth that all and really do a public/private sector, which is where I
thought you were going —

DR. STEINWACHS: You were trying to get Carol to go down that path —

MS. MCCALL: What I was thinking was understanding that the public/private
dichotomy could be a chasm that’s hard to cross right away, is to lead by
example within and across the different public domains and to that point, and I
just want to kind of tease on something that may end up coming back later on in
a new topic, it’s on this idea of the leadership role, leading by example, and
just around the race and ethnicity information. My question is using PDP as a
tremendous opportunity, the basic question of is that information going to be
captured when someone —

DR. BREEN: PDP is a prescription drug program, 35 million people will become
eligible for a drug benefit —

[Multiple speakers.]

MS. MCCALL: So PDP is going to roll around and people are going to enroll,
or quite a few of them, and it’s an opportunity to capture something there and
to use it as a lightning rod for some of the definitions that are talked about.
And then it comes back to the fact that I think one of the greatest data assets
that could be made available for research if the structure and the
identification or de-identification were properly stated, and then linked, is
the data asset that today is just currently claims but could have demographics
and then the prescription drug information which would through this process
potentially link with race and ethnicity that you’d say to lead by example and
make that available would become so incredibly valuable. And then other things
could begin to draft on that what we heard earlier from David, just to begin,
and I didn’t know if there were specific recommendations kind of within that, I
know that’s a very tightly packed concept but if you guys have talked about it,
if there’s something that because of the timing of things could be a
recommendation in here.

MR. LOCALIO: For the last few minutes I just keep shaking my head because I
think what we need is something that actually we talked about a couple of
months ago, and that is I think the subcommittee needs, Marjorie this won’t be
any surprise to you, somebody to provide us with an overview of all the current
restrictions that would frustrate the type of sharing that we’ve talked about
and the access to those data. For example, my feeling is today NCHS data are
there but it’s hard to get to them for reasons of identifiability and the
identifiability issue is going to be in prescription databases, in any of these
small focused data collection efforts, I don’t know if the Children’s, National
Children’s Study is going to do, I know for a fact that the issue is there but
I don’t think, I haven’t heard of anybody laying out any definitive plans on
how that study is going to handle this issue and it’s a big problem of access,
otherwise the data become proprietary, they become somebody’s own dataset like
the Physician’s Health Study and the Nurses Health Study, you can’t get access
to those.

So some of us feel that we never know whether it’s the walnut oil that
causes stroke and saves you from heart disease or whether it’s the peanut
extract, I mean there’s a lot of difficulty in whether, there’s a lot of
difficulty in disproving what others have said or maintained unless you have
very good access to data. In other words the proprietary issue, the closely
held data issue becomes a real problem and so my specific recommendation is
let’s approach this very systematically and say okay, starting with all of the
datasets that you’ve talked about, Data Council, I know pretty much what NCHS’s
position is, and anything that’s been recommended, what’s going to happen to
the prescribing databases, what is the statutory authority underlying the
access to those datasets and the identifiability and what to do about
identifiability and that would give us the basis for any of these
recommendations about combining things or sharing things, sharing things across
agencies, and Dale you gave me some references I don’t know, a year ago, that
are quite interesting, I think that all needs to be synthesized for us.
Otherwise I’m just afraid people are going to collect data and they’re going to
be under utilized, the datasets will be underutilized.

DR. STEINWACHS: I’m starting to collect a list and I’ve gotten it.

MS. GREENBERG: Russ, I haven’t forgotten that, I think you brought that up
at the last meeting and we had a little conversation with Jim Scanlon and he
agreed that he thought that was, we could get a contact or probably under a
task order or something, unless it could be done internally, I’m not sure. But
I think we would need a little subgroup to kind of define what it is you want
and then we would discuss with Jim in how it might get done.

MR. HITCHCOCK: That’s one of the things that Jim wanted to jump in and just
start working on it before John left and John never did for whatever reason but
now that we’ve hired somebody, we can never replace John but to fill John’s
position and maybe Maya will be working on this, maybe Maya could be in charge
of the task order or that sort of thing, with a group of us sort of advisors,
technical advisors —

MS. GREENBERG: And I think it could be a joint project with the Privacy
Subcommittee. It’s certainly something that we can pursue.

DR. MAYS: I like the idea of leading by example but I think that where that
starts is kind of at the level of within the department because when we had our
first hearing and brought all the surveys together, even the surveys didn’t
know what the other was doing and there was not a lot of coordination. And I’m
not one who is at all advocating that everybody has to do the same thing in the
same way but the ability to even go across surveys for example to look at some
particular variable about race is not doable at this point in time to some
extent. And so I think before we even get to the private, I think the private
will be very difficult to do, there is a committee, as I’ve been told several
times, there is a committee which is across agencies which is a committee that
is supposed to meet about the surveys.

MS. BURWELL: She’s talking about from OMB, the Federal Agency Group —

DR. MAYS: Exactly, government wide, I’m just saying, I’m getting to your
point about government wide there’s supposed to be this committee and to some
extent I think if we could just get the Secretary to either light a fire under
them or energize them then some of the issues that we talk about like Census
for example has tons of information about what to do and sometimes the Census
information doesn’t necessarily get to NCHS or some part of the other part of
HHS or something like that. And it’s almost if they worked with each other some
of what we keep saying we need is just a matter of swap between them and some
agencies are better, are even better at some of this methodological research
that would be helpful.

MS. MCCALL: So it could begin with something as simple as a recommendation
around transparency of what’s available so that there’s a committee but I don’t
know enough about it so I can’t speak intelligently on that and how well it’s
working and all of that, but a lot of times, to your point, if we don’t know
what’s available it’s because there hasn’t been a call to action around just
simply making transparent what is available and how it was done —

MR. HITCHCOCK: What will be available is even more important.

MS. MCCALL: Sure, exactly, what’s on the horizon, what am I planning to do
because then I might pick up the phone and call you because we’re doing
something really similar and we just found out that the government after the
fact bought the same house twice, paid twice for the same real estate, which is
we might decide to divide and conquer, it’s kind of a twofer.

MS. GREENBERG: What about, it doesn’t have all of this on it and I don’t
know if it’s a vehicle for that but the Gateway?

MR. HITCHCOCK: The Gateway is a website on the Data Council, talks about
every possible study basically that HHS does, some other federal studies and
talks about how to access the data, it links to all of the methodological pages
about particular surveys, that sort of thing, it’s pretty comprehensive
actually, it’s got thousands of entries —

MS. GREENBERG: One thing it doesn’t have, it doesn’t tell the access
limitations —

DR. MAYS: Well, I think what it doesn’t do is give you enough of
methodologically if you’re making a decision kind of what to do, how to do, and
who you might turn to, I mean what you’re getting is the products that are
there and then you have to, you have to kind of know what it is you’re looking
for in terms of those products. I’ll give you an example, something that I
think would answer questions that if missing it just disappear, which is
there’s a data users meeting, the data user meeting is probably one of the best
meetings to tell you about how the surveys work but the data users stuff which
was a long time ago on the NCHS website has just disappeared, but there’s where
real users who are very sophisticated users will save you weeks if not months
of work to get the one paper that they do that they often don’t publish, but
that they give at this data users meeting, it’s like it’s that kind of stuff if
you’re a user that you’re looking for, not necessarily the data has been
analyzed and you have a result but what you’re looking for —

MS. GREENBERG: You’re talking about a few different things here.

DR. MAYS: Yeah, in order to be able to better stimulate this is are those
kind of papers.

DR. CARR: So following upon the different things that we heard today, I
think it is, and also on the e-prescribing thing, I think it is very helpful to
know where we’re going and then work back incrementally and one of the things I
was trying to back into from the recommendations is what’s the problem that
we’re solving and what’s going to be better at the end of this recommendation.
And I think that the more crisp we can make that and the more tangible and
concrete the deliverable the more progress we’ll make. I mean that’s part of
going from 69 to this number but even this number might get smaller still
because the idea about the e-prescribing and just the information available
about data sources, if we just make three things better in the next year think
how much farther we’ll be.

And then the other question I had today, I thought that at an earlier we had
talked about the OMB definitions being inadequate for some of the questions we
were trying to answer and it wasn’t clear to me from what our recommendation
is, a question came up about that, but are we saying okay for OMB and then
special studies require special dissection —

DR. MAYS: I’m sorry, there’s two issues, if you use the minimum OMB standard
which many people tend to do then it is inadequate to some extent, it’s the
minimum and as a minimum what it doesn’t give you is enough about
subpopulations. So as it stands —

DR. STEINWACHS: So for instance Hispanic would not be split into Puerto
Rican, Latin American or other, that is what you’re talking about in terms of
the minimum —

DR. CARR: But that’s what I didn’t hear, I heard the question come up today
and so are we saying it’s inadequate and let’s make a new recommendation or
it’s good for this population, for this question, and we’ll have a different —

DR. MAYS: It’s the latter, it’s to help people to understand, first of all I
think people have to, some people out there, not the federal government but
some people out there think that this is the standard, the standards, no that
it’s a minimum but it’s the standard. So helping the public to understand that
indeed you can use more then just the two questions and that we would like to
encourage you to use more then two questions, so I think it isn’t that it’s
bad, it’s more that we want to get people to understand when to use it.

DR. CARR: But I’m wondering if that’s really, well, or like I don’t know you
operationalize that in a recommendation.

DR. MAYS: Justine, I don’t think we did in terms of the recommendation, I
think what we did was discuss it and then we were kind of getting pretty much
beat up about all the OMB stuff that was in there and it was really long and
very detailed —

DR. CARR: So we’re not doing that anymore, we’re going with —

DR. MAY: No, we don’t, I mean so I think that —

DR. CARR: That’s fine, I mean I think it is a hard thing —

DR. MAY: I think that’s what people should really go back and look at and
say do you want it, is it —

DR. CARR: But unless you have something that really is actionable it sounds
like that we shouldn’t put it on there.

DR. MAY: The other thing at a federal level that would be actionable about
it would be to encourage the federal government in as many instances as
possible not to reduce to the minimum, I mean I can’t imagine how you’d
function if you did that in all circumstances but to some extent to ask for the
collection to be more towards the maximum and to have available the data more
towards the maximum. As soon as I say that the first think I know will happen
is that we’ve got to deal with standards of privacy and confidentiality, the
more maximum that the data is the more that you run the risk of it’s
identifiable data, so that’s kind of the catch-22 that we keep running into at
a federal level because at a federal level the numbers of individuals who
participate are small and hence may be more identifiable then if you came to
California and did the state of California and tried to do this, it would be —

DR. STEINWACHS: One of the opportunities though with some of these datasets,
like Health Interview Survey, you could pool over years if you were trying to
get the subgroups, maybe it’s worth thinking about a kind of recommendation
that talks about on surveys and other mechanisms where there is an opportunity
to ask multiple questions so if you respond Hispanic you can probe more deeply,
if you respond American Indian you can probe more deeply.

The other, Carol you had me intrigued by the thought which had not occurred
to me at all, I guess currently Medicare’s race and ethnicity only identifies
black, white and other, Latino, and so I guess you had me thinking about
whether or not because you have to enroll in Part D correct? Is whether there
was an open door of opportunity, it may be disappearing rapidly, Bob is shaking
his head here, where it would be possible for people enrolled to get the OMB
classification, at least the minimum out of that, and you had me thinking about
is that an opportunity, I wasn’t going to burden this report with it, as a
letter, is maybe we ought to try, I’m looking for Vickie here —

DR. MAYS: We already have it.

DR. STEINWACHS: You already have it?

DR. MAYS: No, we had some discussion of that —

DR. STEINWACHS: But we ought to try and construct a letter and maybe several
of us could work on it, feedback, because it seems to me it is an opportunity
it would be a shame to pass by and I just haven’t thought about the
registration part —

DR. MAYS: I want to make one comment that people worry about and that is of
all the groups, when we start talking about racial and ethnic minorities and
moving towards greater identification you have to worry about continued
participation, you have to worry about the, what do I want to say, the charges
that people will bring forth about the government invading their privacy. This
is the hardest part for this group, the department has to have a response rate
of the surveys that’s fairly high and income is one, I mean we can’t get people
to do income and so we have to kind of careful in thinking about, I’m one that
wants the data but at the same time I also know what will happen when in a
very, without there being a kind of level campaign that the Census had that if
you kind of decide these things without involving the groups I think you’re
going to find that there will be a big backlash. That’s why even in here when
we were talking about the American Indians we said that there needs to be a
very specific consultation process because we heard very clearly that the
process that was going on, even though everybody thought they were doing things
better in order to get more data in, it was felt that it wasn’t one in which
there was proper consultation.

MR. HUNGATE: I had a question related to this same sensitivity, it seems to
me that the timing of this enrollment process is going to be before we’ve got
very good understood privacy protection visible, right now there’s a lot of
nervousness around it. And so it seems to me that the only way that you could
effectively avoid the problem that you effectively presented is to make it
voluntary to give the information that is more revealing. Now my question then
is does that destroy the value of even taking the information, that’s the
question that I don’t know but it seems to me that there’s an opportunity there
to give the pluses and minuses of divulging information that we think would be
beneficial in determining disparities and help remove those disparities, make
the argument in the preamble to the voluntary decision.

MS. MCCALL: And you’re talking about a preamble in general survey work?

MR. HUNGATE: No, I think in the enrollment process, within the context of
the enrollment to make the racial and ethnic data be a voluntary block which is
preceded by more discussion of these issues.

MS. MCCALL: I still think that I would, my answer to that is I still it
would be valuable and the reason that I think that is that there’s so many
things that can come, I’m not saying it’s easy work and this is I think to some
of the comments made earlier by Russell, but it is straightforward in the fact
that we’re taking demographic data to include race and ethnicity, there will be
prescription data, maybe not electronic prescribing but paid claims data, and
there’s also data around other medical claims. My own personal opinion is that
when the drug benefit comes there are going to be things for better and for
worse that happen within this population, because a lot of drugs weren’t tested
rigorously in terms of clinical trial on people over 65, there are going to be
things that happen and we’re not going to know why and we’re going to want to
know and anything is better then nothing. And so even if it’s voluntary there’s
going to be good information in there.

MS. COOPER: Suppose you try to collect this additional information, even if
it’s voluntary, if you don’t include the individuals to somewhat educate them
early on as to what the advantage is to them or why are you gathering this
information, otherwise you have more and more people that will not participate.

MS. GREENBERG: I’m trying to understand what you’re recommending here about,
you’re saying when people apply for eligibility —

DR. STEINWACHS: Medicare Part D.

MS. GREENBERG: Now everybody who could do that is already in Medicare right?

DR. STEINWACHS: They have the designation that came when they joined,
enrolled in Social Security —

MS. GREENBERG: This subcommittee in previous iterations and in current
iterations has worked on the issue of the race ethnicity data in the Medicare
files over a period I’d say for three years at least, on problems related to
that, I mean I wish we had some, I mean this obviously needs to be discussed
with CMS but right now they do have race ethnicity data on all Medicare
beneficiaries but it isn’t necessarily very good because it’s basically goes
back to when they first applied for Social Security actually and then you can
imagine, at that time it was only black, white and other for a lot of these
people —

DR. STEINWACHS: Let me bring up, we’re discussing the opportunity and Carol
brought it to our attention that in the enrollment of Part D of Medicare there
might be a chance if it wasn’t too late to influence the department and CMS to
capture at least the OMB minimum race ethnicity data and to bring that into the
Medicare program which currently relies only on Social Security classifications
and that’s what Marjorie was talking about —

MR. J. SCANLON: They used to rely on Social Security until about the late
‘80’s I guess it was and then they began asking, at enrollment they were
actually asking but you have the big pipeline problem.

[Multiple speakers.]

MS. GREENBERG: — but actually they don’t use like the HIPAA enrollment
standard does have race ethnicity on it but the Medicare program doesn’t use
that. But in any event it’s an interesting idea but I think we really need to
explore it with CMS, I think the initial position would be that they have race
ethnicity data on these but these are the same beneficiaries that are in their
other programs. And they have tried to update that and supplement what they
have from people’s original —

MS. MCCALL: So they may be interested then in updating it or doing it or
getting a greater level of granularity or grain in the data. If they submit
that they have it and it’s delightful and wonderful and all of that then it
would be a more difficult discussion.

MR. J. SCANLON: Now they do have the survey data of course but that’s for
use, so anything they link from the survey to the claims files would of course
have more detail. But we probably should ask them, I mean there is a question
about the overall data strategy for the Part D anyway, what kind of data will,
I mean when it comes through claims we’re probably not going to get much but
there will be instances where claims data, pharmacy claims data should be
available, but that won’t have race ethnicity on it, it will just be basic
claims information.

DR. MAYS: Is this again kind of the minimum that what you have would be like
black, white, Latino, but what they don’t have is for example that the person
is Caribbean or that the person is —

MR. J. SCANLON: What they have, Vickie, the most they would have would be
the OMB groups and they would rarely have anything —

DR. MAYS: Is it possible to get it?

DR. STEINWACHS: Probably not in the enrollment process, a survey I think you
could get it if there was a commitment to do it, I doubt you could do it in the
enrollment process.

MS. MCCALL: You made a good point on that earlier and I thought we were
talking about more general survey and it becomes a trust issue and I think that
that’s really the more you ask I think the lower the trust probably is. And
that’s why I think this whole idea of having a higher level kind of everywhere
all the time, or maybe that’s enclosed, and then going narrower and deeper from
time to time, when you go narrow and deep, I assume it’s geographically, there
can be some work with I would think local advocacies, true outreach so that
some of the constituencies are actually engaged and involved and then working
to advocate so that builds the trust of and we end up getting a better result.

MR. HUNGATE: Again on the voluntary nature of disclosure vis-à-vis
the OMB minimum it seems to me if I hear the limitation correctly is pretty
limited in terms of whether you get good data or not, and so if you’re not
going to get very good data why press it is my first question, and then second,
if you’re going to get data, if you left the voluntary option to take the more
extensive route then you’re not quite as intrusive, you’re letting somebody who
says hey, I don’t really fit that express that they don’t fit, and so it’s
sensitive —

DR. STEINWACHS: Well, why don’t we take the suggestion, it seems to me if
there could be a conversation with CMS about this and then we can see, because
I think in surveys you can have more of a voluntary and probing, I think it’s
harder on registration processes because pretty much it becomes a routine thing
and those deviations are difficult —

MR. J. SCANLON: It’s seen as burdensome, in surveys and research we have a
lot more leeway to add questions and have a little flexibility. When we require
that every health plan or Medicaid state plan or Medicare general collect this,
they must collect this data, it’s sort of seen as part of the overall
regulatory burden and it just creates problems so we have to be fairly

The other thing is I was thinking, Don, there are enough new members that it
wouldn’t be a bad idea to have the folks from the National Academy of Sciences
come in and brief the group on the big study we just supported at the Academy
on the adequacy of race and ethnicity data. Because they’ve gone through a lot
of this, they talked about how plans, how health plans can or might or would or
wouldn’t collect this kind of data, talked about liability issues. So it’s
starting at that level it probably would help the subcommittee focus on where
the most productive problem they want.

I might add that on the Data Council, it’s still a little early but we’d
like to come to the subcommittee when we think it through a little better, we
actually, we talked about the overall HHS strategy for race ethnicity data in
the past and there was one element of that strategy that we never really got to
because of resources and this was the idea of after you’ve decided to use the
data standards for measuring, we have a policy that we will include these race
ethnicity standards on all the data collected in systems that we sponsor, that
doesn’t mean the things we don’t sponsor, after we sample and over sample in
our surveys you’re still left with the situation where you can’t get there
except through some special augmented study, special targeted population study,
a special epidemiological study.

And we’ve always had this as part of the repertoire but we just haven’t had
the resources in general to get to that but we’re actually, we’ve asked the
Data Council’s Data Strategy Group to look at the possibility of a multi-year,
this is for surveys but it could be other data, and again I don’t know where
we’re going to end up because I don’t know where the resources, how would you
look at the major subpopulations, how would you connect them with our major
surveys across maybe a ten year period so that every group is included once in
that cycle, and what would it look like and what would be the resource
indications. So that process has just started and maybe at some point we’ll
come back where we think we have some choice points.

DR. STEINWACHS: Let me see if we can wrap up this piece of the discussion
because we want to move the report along and the recommendations, I think where
we left it was that the committee members will be reminded and prodded to look
at this, we will be scheduling a conference call so that they’ll be discussion
about the recommendations here, should any be added, in the meantime, well, I
guess we need to do that and then based on what the final recommendations are
is the report will match that, so the report will be cut back and matching. I
think Justine’s suggestion which I very much like was in thinking about the
recommendations that are here is we ought to have a discussion on the
conference call as what’s the problem that this recommendation or the set of
recommendations are directed at solving and if we can’t articulate that then we
can’t write the introduction to that section very well. I think it’s there but
I think that that sort of challenge is an important one because what it does is
it causes us to become clearer and more specific about what it is we hope to
achieve by that recommendation and so I would like very much to do that.

Other comments on this? Vickie?

DR. MAYS: No, I just wanted to say, I’d like to take Justine’s comment a
little further and that is because there’s a set of recommendations here but
there are others so if there’s a problem that seems that we can solve it let us
do it the other way also, it’s not just back them up in terms of this but also
is there, I mean even as we’ve talked it seems like there are a couple of
potential solutions that are there, I mean I think if that is the case because
we probably do have commentary about some of this then let’s back into it the
other way. So I appreciate your comment, Justine.


MS. PAISANO: I have a question, I know there was a series of hearings, I was
only able to go to two of the hearings, are the summaries of the hearings
posted anywhere?

MS. GREENBERG: There are minutes that have been approved, finalized and
approved, they should be on the NCVHS website.

DR. MAYS: I was going to say, some just landed on my desk two weeks ago that
are back in November, so they’ve just come through.

MS. GREENBERG: But the hearings I think —

DR. MAYS: I can’t remember what it’s from but I’ve gotten all of a sudden,
I’ve got a flurry of reports all of a sudden.

DR. STEINWACHS: Maybe we can get a message out to the committee about where
the information is so they can access on the hearings because I agree with you

MS. PAISANO: I think for the hearing of American Indian Alaska Natives, I
think they really need to go back and read them again.

DR. MAYS: I think that one’s out.

DR. STEINWACHS: So we’ll get an email out and then I think just what you’re
suggesting Edna, it’d be good for all of us if there are particular groups or
issues we want to think harder about to go back and look at what came out of
the hearings just because that’s really the evidentiary base we bring forward
and if we can’t talk about the hearings then we don’t have quite the strength
to talk about it.

MS. JACKSON: A quick question about the logistics of the conference call,
the timing, when you were looking at trying to get something together in a call
a couple of weeks ago —

[Multiple speakers.]

DR. STEINWACHS: Why don’t we poll the group because, this is a conference
call to try and bring closure to the recommendations for the population report
and then the report. Carol?

MS. MCCALL: I have a fairly basic question now which is when’s it due? When
would we like it to be in?

MS. GREENBERG: The plan is to take it the full committee for approval at the
June meeting which means it would need to go to the executive subcommittee
several weeks before then.

DR. MAYS: Part of why I was saying let us do this because I think we need to
do a backwards schedule for the processes that we have and because it’s a
little longer then usual is to give ourselves enough time now to do it so that
it will get out in plenty of time so I want to do it backwards in terms of the
date by which Debbie wants to send it to the subcommittee and then work back
from that. Because it’s not actually that long of a timeframe —

DR. STEINWACHS: So the conference call is tomorrow morning? 7:00 a.m. —

— [Laughter.] —

MS. GREENBERG: Do you want to have a conference call to come to closure on
these recommendations before people have seen the report?

DR. MAYS: Yes because —

MS. GREENBERG: If we send it out will it then guide the report, now once
people have seen the whole report, etc., you might make some changes in the
wording to some of these recommendations I would think but you’re trying to
identify content?

DR. MAYS: What will do is give everybody, I mean I think this is the best
way, we’ll give everybody the report in the state that it’s in, we just need to
clean up commentary and stuff like that that’s in it, why don’t we just give
them everything that we have but ask them not to focus, I mean see I think it’s
going to be more disruptive but let’s just do it if it’s going to move it
along, is to ask them to focus though on the recommendations. I think we’ve had
the report but the new people don’t so why don’t we give them the report up to
its present cleanup stage and say okay here are the recommendations, we want to
make sure that these are the recommendations that we want to go forth. I gave
them what the old recommendations were so they could also see if anything is
left out. In my sense then the next stage would be to clean up those
recommendations and then to go back now and again if we can stay with the
overarching structure is kind of standards, methods, and infrastructure, then I
think the report gets organized the same way in terms of the writing of the
report so that there’s other stuff that can come out. Simon made a comment when
we were on the executive committee report about the GAO reports and their size
and what have you and I actually went and looked at some and we’re going to
try, we’re going to try. With this structure I think we might be able to and I
looked at a few and got some ideas, the writers are pretty good at helping to
reduce so I think that we’ll try.

DR. BREEN: A couple other questions just to understand this so that we can
read it better, or I can read it better. The specific recommendations, it says
there’s three and there’s only two that are highlighted, should the third one
be bolded too? Is this actually the third one, that you gave us? HHS shall
improve coordination —

DR. MAYS: That’s old —

DR. BREEN: I know, but there are three and is there not a third one?

MS. GREENBERG: No, the three are here.

DR. MAYS: That’s the old, so the three that we’re talking about are the
three overarching recommendations —

DR. BREEN: The guidance thing is just sort of kicking around there, not to
worry, that is not to be bolded.

MS. GREENBERG: But this is not and or anywhere, right, this is —

DR. BREEN: Right, this is just for us to read through and make sure nothing
is missing from what ended up being culled out. So I understood the
instruction, I just was not sure what the original three were.

MS. GREENBERG: If you weren’t at the full committee meeting —

[Multiple speakers.]

MS. GREENBERG: Can I just clarify here that if you weren’t at the full
committee meeting discussion earlier, if you weren’t at the full committee
meeting earlier this first recommendation in bold here on the section, on the
sorter document that says section five, the first page, instead of saying
assessing here it’s standards for, I think it was agreed it would say by
developing standards for collecting race and ethnicity, and then at the end of
number two in italics again the word is instead of assessing, collect —

DR. MAYS: I was about to say did we have staff at the meeting who actually
captured all of these?

DR. STEINWACHS: You think we know our course? Okay, so we will —

DR. BREEN: The other thing I wanted to ask though, we say race and ethnicity
and in the specific strategies we also mention language and we talked about
incorporating language and this document incorporates language, so do we want
to take advantage of that and add language?

DR. MAYS: I think we have to be a little careful because we don’t have
enough hearings on the language issue, so we have it in in some place where we
thought it was okay but we didn’t do a hearing, it came up in the first and it
came up where else, I’m trying to think —

MR. HITCHCOCK: It was on our menu though, we just never did, I was thinking
in terms of this Part 2 enrollment language might need something, you can even
bold business case for collecting language —

DR. BREEN: We’ve talked about that, in fact that’s one of the business cases
we have we think for quality of care.

MS. BURWELL: It also came from historical recommendations as well, language,
and one part —

[Multiple speakers.]

Agenda Item: Discussion of Committee’s

DR. STEINWACHS: Okay we’re going to change gears here a little bit
consistent with sort of the overall agenda and that was to talk about future
directions and where we’re going and where we’re going builds on what we’ve
done in the past but also looks for new opportunities and ways to strengthen
what we’d like to do and that is to make a difference and to have the
recommendations here, valuable. The other part was a discussion which I
mentioned before which Bob Hungate and I had had and also was part of Simon and
my discussion that it would be great if there ways in which the agenda for the
Quality Workgroup and the agenda for the Population Committee, maybe that’s
because we’re interested in population quality and population health and
they’re interested in quality, it’s not only population but also individual,
and health care settings and organizations, if there was some way there was
more overlap between those two, it could also be a strengthening strategy I
think for our activities. But Simon had agreed to come and talk to us some
about his thoughts about ways we might move and also strengthen the main
committee activities too.

DR. COHN: That’s a tall order —

DR. STEINWACHS: That was a long time ago, see I shift it to the leadership

DR. COHN: I’m really not here to set the agenda for you, that’s not really
my job, I don’t know what my job is, my job is to help you set the agenda I
think. Really what I wanted to do rather is to more talk about the process and
meanwhile I was just up in Standards and Security and they’re interestingly
enough talking about secondary data issues relating to the electronic health
record. And I went huh, quality, populations, maybe they ought to have some
joint hearings, what an idea. All I’m speaking of is the fact that there’s many
opportunities as well as sort of crossing issues that we need to be open to as
we talk.

Now from my view obviously the first job of the committee is really to get
the population’s report completed and all of that and I certainly don’t want
you to devote too much of your intention to the five year plan, ten year plan
or whatever until we have that sort of pretty well handled. And I would just
look to all of you to figure out a reasonable work plan to get that done so
that we can obviously have it for consideration in June.

DR. STEINWACHS: And that’s what we did before you arrived.

DR. COHN: Well it sounds like you guys finished it up, thank you.

DR. STEINWACHS: The work plan.

DR. COHN: But I was going to suggest, this is actually based on a number of
good ideas that I’ve heard as I’ve talked to all of you is I would certainly
not be hasty in terms of the agenda setting process, I think there’s an
occasion to worry, begin to think about all the opportunities. The other thing
is that I would actually strongly encourage us to try to seek sort of external
advise and input into some of it as we go forward.

Now of course it’s hard to just invite and AHRQ and CMS and whoever, kind of
just tell us what you’d like us to do and clearly there has to be some thought,
I know you all tend to think about sort of framing areas and then further
investigating them. Obviously one of the things I’ve heard from a lot of people
is we want to make sure things are timely and relevant and obviously meet, I
hate to use the term customer needs but recognizing that we’re all here because
we’re employees of the federal government or here at the request and
appointment of the federal government, that it really makes sense for us to
take a long look and make sure that the things that we come up with and the
topics that we’re dealing with are things that would be of value to the policy
makers. It could be a one year policy maker vision or it can be a five year
policy maker vision or even a longer vision but you obviously want to make sure
that when we come up with something that it’s eagerly awaited and that we
obviously also put things in small enough pieces that we can actually produce
things in a timely fashion.

And so I just wanted to make those points, I mean they’ll be other things
that Don and I will be working on, this will not be the last time you see me at
a subcommittee meeting because the thing I’m most concerned about is that we
get the agenda and the work plan and the priorities right because I think
you’re all, you’re wonderful, I think the work you’ve done has been great, and
I just want to make sure that it’s directed to show value.

DR. STEINWACHS: Thank you, Simon. Are there comments or discussion about
this as we move into discussing our agenda?

DR. BREEN: It seems like, I’ve only been on this committee for a couple of
years and I came on with Vickie and I know a little bit but not a lot about its
history but I think that this committee is historically pretty much always been
interested in whatever you call, whatever the fashionable name is at the time
but reducing health disparities and monitoring health disparities and making
sure that we have good racial ethnic data and whatever other kinds of health
disparities we know about. So I’m kind of assuming that we’re going to continue
with that because I don’t think we’ve finished, I think it’s a good idea to
continue and in fact where I would really like to see us go, and I’m not sure
exactly how we should do this, but it just, every time I turn around there’s an
interest in making the data electronic in this country, that we’re going to be
collecting data electronically, physicians are going to be doing that. I know
that the government agencies are speeding up their data collection and data
release by improving their ways of collecting data and reporting out data.

So as all of this happens I just would like to see us being at the right
places at the right times so that we can sort of enter in with our content
pieces and be involved in that because I would hate to see all these data
collection systems get put into place and us end up with this huge data
infrastructure, this gorgeous thing at the end of ten years that isn’t
collecting data on race, socioeconomic status, ethnicity, language, the things
that I think at this point we all agree really needs to be collected if we’re
going to reasonably monitor health disparities and health quality, health care,
delivery of, quality of delivery health care in the population. And I think
that within the larger committee, National Committee on Vital and Health
Statistics, there’s a lot of bigger committees that focus on those different
things, I don’t usually attend the larger committee so I don’t know all the
pieces that are going on but I think a lot of it’s right here and if we could
be in the right place at the right time to just sort of enter into those right
conversations I think we could really do a lot.

MS. GREENBERG: Clearly that I think, it ties in very much to not only what I
was going to say but to the brief discussion that the committee just had with
David Brailer and the letter that he sent because to the committee about
looking at basically the implications of the NHIN and the electronic health
record for population health. And I think that population disparities is
clearly one part of that but and when you start looking at population health
you find the limitations of just looking at averages and so that kind of comes
out of it.

But I think that this is the one subcommittee that really looks at all the
population health issues including disparities but all the issues relating to
what we were talking about earlier, about access to data and sharing of
population based data and particularly this issue of how this electronic
infrastructure that’s being built now can meet the needs for population health,
I mean I was really glad to hear David say that he’s very committed to that
because almost all of the conversation and everything you read is focused on
clinical health care systems, which of course is critical but it’s not just
obvious that this system that’s being built will meet the needs, will work for
population health and will meet the needs of public health, it has to be built
into the system.

I mean I thought Margaret Kane, what she said at that hearing in June has
just really stayed with me and it was quoted by Bob in the piece he wrote for
the Quality Workgroup but that if this isn’t really built into electronic
health records, this idea of having data available not only for the care of
that individual patient but then to build into quality indicators and
population health and all that, it won’t get any better off in those areas then
we were before.

MS. MCCALL: I was interested in something Simon said, whether it’s one year
or five year or ten year vision, that that can be one of our common themes
regardless of which time horizon we’re talking about, that becomes what we
build into our work which is the charge of this group as I’m becoming to
understand it, part of it is what should we be looking at to look at the
population and variation within and make sure that it is part of the recipe,
part of the design, the time is now. And part of the design of something to be
honest it’s going to be a while, and then so recognizing that it’s going to be
a while even though David talked about things happening now, so that, it also
helps us set our agenda for how do we then begin to set whether it’s precedent
or communities of practice or specific research tools or survey tools so that
they become part of our vocabulary. Simply because the be all end all of
electronic medical records is not in the hands of every physician in the United
States doesn’t mean that the things that are important don’t or can’t enter the
vocabulary, I would submit to you that it’s actually very important they do
begin to enter the lexicon now so that by the time that these other things are
coming into being it’s not a wholesale paradigm shift.

DR. BREEN: I think that even —

[Multiple speakers.]

DR. COHN: I do want to apologize because I’ve got to run up to the NHII
Workgroup —

[Multiple speakers.]

DR. MAYS: — and that is that one of the things we had agreed upon and I’m
hoping it will stay because I think it has made an impact is that we would keep
bringing to the full committee this notion of population health and the same,
I’ve had several people come up and talk about how those presentations have
helped them to understand these issues relative to the work that they’re doing
on the other subcommittees. So I’d like to go back to the suggestion that I
think I made an executive subcommittee retreat like two years and that is it
would be great if what people did was talked about what is the population
health implications of what they’re proposing. So if every time somebody had
like a letter or something like that, if they could also just say in a couple
of sentences what are the population health implications then I think it will
help the work to go back and forth. And if the committee continues to have, not
frequently but as often as possible these presentations to the full committee I
really think that that has been really helpful in changing the discussions, at
least that’s what people have said to me, they’ve come up afterwards, I’ve had
people even ask me to give them readings and things like that about some of
this stuff —

MS. GREENBERG: You mean members —

DR. MAYS: Members —

MS. GREENBERG: — who have not darkened the doorstep of this subcommittee —

DR. MAYS: Exactly, they’ve asked for readings and in particular people
wanted the two presentations by Suzanne Heurton-Roberts and Virginia Cain, that
it was put up because they wanted those to use. So I’m just leaving that as a
suggestion that I think —

DR. COHN: — you are going to see me relatively frequently because I want to
make sure that, as I said, this issue of agenda setting appears to me really
the critical issue for all of us and so we just need to spend enough time doing
that, it’s good to know that we’re getting customers already asking us as you
commented and we can begin to think about where we’re going.

[Multiple speakers.]

DR. CARR: I was going to say that I think if the Quality is a subcommittee
of Populations that the agenda has to be set in populations that incorporates
Quality and then whatever Quality work has to be done as a subgroup so you’re
done with that, but even though the title is Populations the agenda needs to be
comprehensive so that a workgroup reports up.

DR. STEINWACHS: Justine did something and shared with me, I wanted to share
with the whole subcommittee and have her talk a little bit about it, that would
help you know a little bit more about what the Quality Workgroup has been
doing, Justine, do you want to do that right now?

MS. GREENBERG: Maybe she could do it at the Quality Workgroup meeting
tomorrow morning.

MR. HUNGATE: Bob, it’s just that the idea of sharing because not all the
Population Committee is there —

DR. STEINWACHS: They would be welcome.

MS. GREENBERG: But some of them might be going to Privacy I suppose.

DR. CARR: I’m happy to do it twice, I’m volunteering —

MR. HUNGATE: Why don’t we do it now, I found it very helpful and I think we
do want to promote the dialogue and then whoever can attend the next time but

DR. STEINWACHS: Does everyone have it?

MS. MCCALL: Before you begin can I ask you a quick question? When we will be
done, I’ve got some things that I had committed between now and 6:00 —

DR. STEINWACHS: We were supposed to go to 5:30 I think —

PARTICIPANT: We were supposed to go until 5:30 but then we changed it until
5:00 because of the conflict with the NHII.

DR. CARR: This began, this emanated out of my reflections last evening in
the business center at the Holiday Inn, having read through all of the
testimony from the June and the September hearings trying to put together
pretty much a statement, an overview and where the gaps are so if you look on
the shaded column in the middle it begins with the Institute of Medicine
Dimensions of Care, safe, effective, timely, patient centers, equitable and
efficient. And for each of those, to the left are the systems driven things
that we heard about, to the right are the clinical disease state conditions
that we heard about. And I’ll take you through this but the point of this was
to point out the gaps and that would then help inform our agenda.

So if you look at systems driven to the left, we heard from Ken Kizer on the
NQF safe practices and those are all about institutional things,
anticoagulation, central lines, provider order entry, intensivists onsite, all
those things and so they cut across all conditions. AHRQ is helping by making
definitions of metrics of how are you complying with this and they are, the
source of their metrics comes from ICD-9 diagnosis codes that are
administrative database, they’re not perfect, I’m going to say that much but
anyway, they’re something. And that’s the inpatient side and actually I added
to this also on the outpatient side the e-prescribing is another way of safety
on the outpatient side.

Let me do the systems driven, just the other things I thought about,
e-prescribing also helps us with being more timely, the patient personal health
record is patient centered, but equitable, as you come down to equitable race
and ethnicity, maybe disparities, I don’t know what the right word is but that
really cuts across to the left in terms of our systems and then let’s move to
the right side of the page where we talk about clinical conditions driven. So
on the inpatient side if we talk about safety we heard about mortality, Bob’s
particular interest in risk adjusted outcomes. But in fact to have risk
adjusted outcomes you need databases that are manually collected and that are
sufficient size so we have that from the American College of Cardiology and
Society for Thoracic Surgeons.

Effective is what JCAHO and CMS have been focusing on, these are process
measures, that did you give aspirin on admission, ace inhibitor on discharge,
and these come from chart review which we heard were extremely labor intensive
but they do address major conditions, heart failure, MI, and pneumonia that we
all, that are represent a lot of admissions.

In terms of timely, again JCAHO and CMS have the process measures from chart
review, time to timely medications and so on. Patent centered, we had talked
about functional status, we haven’t fixed that yet, it’s been in the writings
of the NCVHS for many years now, we’re not there yet, but that is at the end of
all these interventions how does a patient function, a good question. And then
in terms of equitable we have seen some of the recent specific diagnostic
condition things that we know that there is inequity.

And so the question, that sort of was my summary of the two hearings and
then the questions are where are the gaps, and I think we haven’t solved
functional status and we haven’t solved race and ethnicity or populations. And
then the other gap is automated reporting because as nice as it is to have
information about myocardial infarction heart failure these are all chart
reviews and we heard about the backbreaking responsibility that has come with
hiring all these new staff to go page by page through the medical record.

In terms of what’s the role for the electronic health record I think to the
point, everybody’s point, we want to leverage that but the things that will be
a challenge there are a taxonomy, as much as we hate the ICD-9 administrative,
or the limitations, I like the ICD-9 but I mean the administrative dataset, I’m
going to love ICD-10, but the thing is that it screws you at times but there is
a taxonomy, we don’t have that and when you hire all these people reporting at
the thing they wanted everything from the blood pressure to the heart rate to
the respiratory rate and there’s no data definitions there.

The second thing is we heard about A1C would be really helpful in
understanding diabetes, what we want though are flexible fields so tomorrow’s
diabetes test can also be captured if A1C becomes obsolete.

Finally, what are the lessons from the VA, Kaiser, other systems, what went
wrong in their system. I added here also decision support, what’s the role of
decision support within the electronic health record. And so then to the right
I just said what is it, as we think about this enormous agenda what are the
incremental steps that we can think about that the electronic health record
should accomplish and I think those domains help us a great deal in terms of
being what will be better tomorrow, whether it’s safety, efficacy, so that’s
sort of my summary of the hearings.

DR. STEINWACHS: What excited me about this I guess was trying to think about
how we do on what we do on the individual level which is the electronic health
record and so on, how does that help talk to population health and what we do
at the survey level, how does that talk to issues that arise in quality and
health care disparities, how do we bring those two agendas together —

MR. HUNGATE: I think making that synergistic to the goal would increase our
productivity so much, it’s a real opportunity.

DR. STEINWACHS: I think what Justine laid out to me was very useful in
trying to think about the pieces and I thought this could be a foundation for
future discussions. The other is we may want to invite from AHRQ the two
reports for 2004 are now out, the National Reports on Health Care Quality and
Health Care Disparities —

MR. HUNGATE: I think those ought to go full committee.

MS. GREENBERG: Well, Stan has asked to make a presentation, for AHRQ to make
a presentation on those two reports, either at the June meeting or the
September meeting.

DR. STEINWACHS: Because it seemed to me that when you talk about limitations
in trying to produce a national set of information, and even parts of that are
not national, that does talk some of challenges we’re concerned with and it
both brings race and ethnicity into it as well as more traditional quality, so
the population side if you will of what is on the other side with the
electronic health record and so trying to bring those agendas together and our
agenda it seems to me would be exciting.

MR. J. SCANLON: I think the point though, the other is I think you just have
to be careful that the electronic health record is a journey and I don’t, I
guess the committee is probably thinking the right way, you want to stay in
that area and you want to partake of the development activities and you may
even want to think of set principles for furthering population health in those
development, but it’s a long way off before we would be getting any data of any
significance from those.

The other job of the Population Subcommittee I think is to look at the
resources, the databases, the statistics, the research, the data needed for
research, the content now, not ahead, and in fact the electronic health record
will never be a population based, well, maybe a long way down the road it will
be, by definition it’s a health care record, there are other ways to look at
it, your job I think still is to provide the best thinking in terms of leads,
gaps, nurturing these databases, enhancing them, the ones we use now are the
ones we’re working on in terms of population statistics, data for research,
data for quality, but it’s in a statistical sense, it’s not an individual

And I wouldn’t want you to lose, I wouldn’t want you to suddenly become EHR
advocates to the exclusion of the mainstream population statistics, population
data, population focus, I think you want to maintain your activities on both
dimensions. And don’t lock into, I think when you’re doing agenda setting don’t
block into a couple of ideas right away, I think you have to throw some ideas
on the table, talk to other people, hear from agencies, hear from others, then
start sorting out, otherwise you’re going to lock into a new project right away
and it’s not necessarily going to be that robust necessarily down the road.

MS. GREENBERG: Well I want to build on what Jim said and also I want to
thank Justine for her conceptualizing this as well and I think, I guess it’s
obvious that the Populations Subcommittee has the biggest challenge I think of
any group —

DR. STEINWACHS: We got the whole population.

MS. GREENBERG: Right, I’m only saying that to you after you’ve accepted to
be the new chair and Vickie already knows it so she told you that —

DR. STEINWACHS: I could go into early retirement.

MS. GREENBERG: The other subcommittees a lot of the agenda has been laid out
by MMA, etc., but two things. One is the flip side of kind of all the
possibilities of EHR is that I think it’s the Population Subcommittee that also
has to have, be part of that process of what Jim was describing, of explaining
how that isn’t going to solve all population health problems. I mean when I was
at the NHII conference this summer there were people saying why would we need
the HANES, the Health and Nutrition Examination Survey, once we have these
electronic health records, there were people in the population —

DR. STEINWACHS: Because there’s going to be a new law that says a mandatory
health physical for every American every year in your electronic health record.

MS. GREENBERG: There are issues of standardized data that you don’t get from
individual offices, there are a lot of issues, there’s samples, there’s who
knows what but I mean there isn’t a good understanding of that and I think
that’s important.

The other thing which of course is one of my picks and Bob left but —

[Multiple speakers.]

MS. GREENBERG: — I do think, and I guess this is just what the Populations
Subcommittee needs to decide whether it wants to spend much more time on this
but that we shouldn’t just give up completely on administrative data because it
is still a major source of population health data.

DR. STEINWACHS: Justine and I were talking before because you get to an
electronic health record from two directions, either you grow it from the
clinical office or you grow it from administrative demands that keeps
structuring what becomes the clinical kinds of information. And so I think you
want to work both ways and thinking through it what can you do with that
information that relates to populations. So I mean the a lot of the populations
you can —

MR. J. SCANLON: — administrative data now the Medicare claims data for
example and hospital discharge data, and you can try to produce these when we
originally started, those are major databases in terms of our repertoire of
research, it took a long time to get Medicare data to the point where it was,
the claims could actually, they were standardized and high quality, but they’re
major resources —

MS. GREENBERG: And I know that Justine and I don’t necessarily agree on
this, that’s why I would put administrative data not just for safe but I mean
admitted there’s a potential and some of it’s being used now for issues related
to effectiveness, for patient centered, all of those. So I think that what we
want to do is improving all of these data sources.

DR. CARR: Do we know, and maybe I should know this, the recommendation
number three that said that the conditions present admission would be flagged?


DR. CARR: Did that pass?

MS. GREENBERG: It passed the committee —

DR. CARR: No, I mean where is it —

MS. GREENBERG: It was just discussed at some length at the National Uniform
Billing Committee last week which is responsible for the uniform bill for
hospitals, and there’s now a subgroup working on the definition because it
still is in, it’s in the, it’s on the new UB-04 which we are moving ahead with
and it is also I believe going to be in the next version of the 837 which is
the HIPAA claims standard.

DR. CARR: So that would be tremendous, that would make so much, all of the
stuff that AHRQ is struggling with now that isn’t quite working which was it
present on admission or not —

MS. GREENBERG: Actually there was a little backsliding at the meeting and I
had a little tantrum about it —

DR. STEINWACHS: Thank you, Marjorie.

MS. GREENBERG: Eternal vigilance, eternal vigilance.

DR. CARR: When would it kick in?

DR. STEINWACHS: When would it kick in? I don’t know how —

MS. GREENBERG: Well, there’s two points, the UB-04 would probably be
implemented in ’07, because it’s already ’05 and running, and the new version
of the claim is up to when the next HIPAA standard is adopted. So that standard
will be available pretty soon but then it has to be adopted for rulemaking by
the Secretary.

DR. STEINWACHS: Why don’t we take advantage of the suggestion both of Jim
and Simon is that we could start sort of making a list of things that this
committee ought to think about as an agenda list, with the idea that we’d like
some commonality between the Quality Workgroup and this group and so there’s
conversation going on that isn’t two separate activities. And that we could
invite some people in to talk to us, to help us think about parts of those
agenda and so between now and the next meeting or whenever you feel, if you’d
send me an email and we can then circulate it to the committee, or send it to
everyone in the committee in an email, that’s fine too, but get it out, but
what are the ideas you have and who should we talk to and I guess we will have
AHRQ coming around with two reports, either June or September, but think about
who else, help us think about what is it we ought to be trying to pursue, and I
think that helps inform both committees, and those of you who can come to the
Workgroup on Quality tomorrow morning at 8:30 are invited, if you aren’t part
of that committee you’re welcome to be part.

MS. GREENBERG: And I think you might think in terms of framing some
questions that you would like AHRQ to answer when they come and make those

DR. STEINWACHS: Now one of the topics that’s near and dear to my heart, I
think Vickie’s too, is mental health and if you look at the sort of performance
measures for mental health in this country they’re nowhere near making, they
don’t have the progress that measures the quality of performance or in other
areas and also this evidence that the system is not responding where you do see
improvement on some of the other performance measures, I’ve been told by some
people looking at it you don’t see improvement on the mental health performance
measures that we’re using. So it’s two sets of problems so I set out there but
I think it’s those gaps as well as this issue of can we measure this for the
important population subgroups which gets into disparities report, that plays
into this.

The third thing I think continues to be the measure of health which is sort
of a functional status issue, is how do we measure health or well being and
functioning as different from illness and I think we’re much better at
measuring illnesses and so the health plays in the outcomes of illnesses, it
also plays into how we’re doing, either absence or presence, and quality of
life. I measure that on myself every day and reports are uncertain —

MR. J. SCANLON: — mood ring —

[Multiple speakers.]

MR. J. SCANLON: — there’s no interest in population measures, summary
measures of health, so it’s always hard to know exactly what and it will be on
dollies(?) and the quality and stuff like that so that might be down the road
another thing to consider, so again I don’t know where it would take us, I
don’t know that there are a lot of new ideas out there either.

MS. GREENBERG: Well, there are possibilities once you decide really what
your priorities are of getting, having some contractual work done, having
hearings, and so kind of expanding your resources modestly at least because I
mean what you put on the table of course is lifetime employment but —

DR. STEINWACHS: Well, and I have been looking for lifetime employment,
Marjorie, so this is not —

[Multiple speakers.]

DR. STEINWACHS: One other thing is there were copies of Health US about, and
I was looking for at least a couple people to volunteer to spend some time and
actually make sure that the recommendations, that the recommendation went back
because I know many times we capture, we get it and it sits in a pile and then
gets missed and so I was trying to remember when the comments were —

DR. MAYS: They’re already due but they always say it’s okay for us to get
them late.

MR. J. SCANLON: But were you thinking, Don, of collecting all the comments
from the committee and then sending them forward or —

DR. STEINWACHS: That would be great but I don’t think it will probably, so
what I’ll do is just send out an email and see if I can encourage a couple of
volunteers to at least say that they will otherwise I’m afraid sometimes we
miss an opportunity that we as a committee at least ought to be viewed as
responsive —

DR. MAYS: There was the comment that Jennifer told us we could still comment
on the research centers —

MS. GREENBERG: I believe that Russell did.

MR. LOCALIO: I did, I prefaced it that this was not to be the opinion of
NCVHS or the opinion of (?) or any of the divisions thereof, so I protected
everybody here.

MS. GREENBERG: Do you want to share it with the other members?

MR. LOCALIO: Well, I don’t have my comments with me, they’re in some
electronic media.

DR. STEINWACHS: Why don’t you email them out, we would appreciate it, thank
you, thank you for doing so —

MS. GREENBERG: You sent them to —

MR. LOCALIO: I sent them to you just as a courtesy.

MS. GREENBERG: And I forwarded them to Ed Sondik and Jennifer Maddens.

MR. LOCALIO: I sent them to the person —

MS. GREENBERG: Ken Harris I guess is the name of the person.

DR. STEINWACHS: So Russell thank you for that and we will get that and share
it with the other committee members and so that is valuable as a response. Do
you want to vote, Russ, as how many would stand behind you —

— [Laughter.] —

DR. STEINWACHS: Okay, so we’ll be scheduling the conference call once we
work out the backwards schedule on the recommendations and report —

MS. GREENBERG: Who’s going to work out the backwards, I mean what is the

DR. MAYS: I think we need to do it with Debbie in terms of because the last

MS. JACKSON: I have the schedule and we can talk about it after we’re done
because usually people can think of having the report ready by mid-May, that’s
six weeks out, that gives people three weeks for the executive subcommittee,
gives you two weeks to get feedback, so kind of target that in mid-May that we
need to have the report completed.

MS. GREENBERG: Well I think the members of the full committee are going to
need a few weeks, they may need these two weeks to read it.

DR. STEINWACHS: So maybe we can have a three way conversation, live or an
email, to try and figure that out. Thank you to everyone, I appreciate it.

[Whereupon at 5:26 p.m. the breakout session was adjourned.]