[This Transcript is Unedited]




June 10, 2009

National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782

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


P R O C E E D I N G S [3:40 p.m.]

DR. W. SCANLON: Actually, two key people for our first topic are not here
yet. Walter is one. He drafted a letter in February which we did not send about
sort of the issue of resources. And then Ed Sondik said he would join us to
talk about sort of what’s happened since February in terms of NVCHS resources
and some of the more on the response to the letter that we sent in February. So
I think we can go through the housekeeping detail, I guess. We probably should
all introduce ourselves to get on the record that we’re all there for posterity
sort on the web. I’m Bill Scanlon, the Co-Chair of this Population Subcommittee
and my other Co-Chair, Don Steinwachs, has wisely taken the time to go to the
Galopalos. So he sends his regards. He has no thoughts about it. Let’s go
around the room.

DR. LAND: I’m Garland Land, Executive Director of National Association for
Public Health Statistics and Information Systems.

DR. HORNBROOK: I’m Mark Hornbrook from Kaiser-Permanente. No conflicts.

DR. BREEN: I’m Nancy Breen from the National Cancer Institute, NIH.

DR. HITCHCOCK: I’m Dale Hitchcock. I work with Bill Scanlon at ASP.

DR. MIDDLETON: Blackford Middleton, Partners Healthcare, Brigham &
Womens Hospital.

DR. BAREFIELD: Amanda Barefield.

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

DR. W. SCANLON: All right. Who’s on the phone?

MS. PAISANO: Edna Paisano from IHS.

Agenda Item: Investment in Health Statistics- Draft
Letter Feb. 2009

DR. W. SCANLON: Edna, welcome. And we’re anticipating that Dan Friedman and
Gib Parrish are going to join us probably around 4:30 to talk about the
statistics division for the 21st century, give us an update sort of
a preview for tomorrow’s discussion.

So given that Walter and Ed are not here yet, let me maybe sort of jump over
to the second topic and just give you an introduction to that. As you all
remember, we had hearings the day after the Full Committee’s meeting in
February. At that point in time, there was a thought that both from the
November time and modeling date of improved health reform as well as the
meeting in February, one of the themes that’s important is that we get access
from the access to the data that exists. We could talk about the issue of data
accuracy, but it seems like it’s more of a sort of a no-brainer that if we have
data, we should be making the best use possible sort of it. And what we heard
particularly in the prior hearing was that for peoples within the government
even that access to information was often problematic. And so, therefore, we
had sent a letter to the Secretary after a data linkages hearings, which goes
back a good year and a half, saying that we really need to think about how do
we promote the access to the data. There was discussion. I mean, Don and I have
talked to Bob with the idea that there was going to be an introductory letter
to the Secretary saying welcome to your job, we’re the NCVHS, there are various
things that we think are important, one of them is access to data. And we had
discussions about that. But with the changes in who was going to be the
Secretary as well as the delays in who was going to be the Secretary, that
letter went not to our message. So there is this potential that we think about
sending a letter or including this message in something at some point again to
remind sort of everyone about how important this is.

Agenda Item: Follow-Up – Health Insurance Data
Gaps and Modeling

DR. W. SCANLON: The second thing to think about and I think we probably
should take this on as an assignment rather than trying to resolve it today.
But you know, let’s reflect back on what we heard in February, what we heard
sort of in November in terms of adequacy of data for both measuring status as
well as modeling purposes, and what would be themes that would come out of that
to say here’s are critical dimensions that you want to think about in the

The Stimulus – I mean, I was sincere this morning. I think the Stimulus
Act changes our game tremendously in the sense that we’ve been talking about
data adequacy primarily in the context of surveys and, to some extent, to
administrative claims. We haven’t been really dealing with the idea that
there’s going to be rich data available somewhere. And the question is can it
be tapped into, how can it be officially tapped into, how can it fulfill needs
that we have here and maybe even fulfill needs that we never even thought were
needs because we never thought we were going to get that close to having
information that rich. I mean it’s kind of – it’s a question of expanding
your vision as much as it is sort of thinking about sort of how you should
satisfy the needs of your prior sort of vision.

So these are things that as a subcommittee over time and working full
committee, I feel it’s important that we try to move forward on. As we, you
know, this linkage to meaningful use, I think, is not something we do as a
subcommittee alone. This is something where the standards and the privacy and
the qualities of committees all – I mean in June, we almost had a hearing
on meaningful use in the Quality Subcommittee, and there was a plan to do that,
and then it got superseded by the two-day meeting of the Executive
Subcommittee. But it’s basically, it’s something that cuts across all sort of
four of our subcommittees. We need to think about sort of how do we work
together? A number of us are on the Quality Subcommittee. So it’s very easy to
think about, you know, we have that sort of interaction and we can take
advantage of that. But I think we’re also going to need to consider how do we
coordinate with Privacy and Security and how do we coordinate with the

And for me honestly, even though I’ve been on the committee now for a number
of years, they still remain black boxes, okay. And so how do we sort of work in
tandem? That’s something to be determined. So any thoughts about the meeting we
had in February, the hearing we had in February and what we should be doing in
terms of follow up, I’d be interested in entertaining a discussion about.

DR. MIDDLETON: Bill, just a couple thoughts just to kind of recollect that
meeting, and I think I did miss part of the special testimonies in populations.
Because I do recall your exhortations, among others, that there was a financial
crisis in some of the vital statistics. So number one, I think we have to make
sure that that is somehow being, you know, made better, redressed or otherwise
highlighted as an unacceptable state. And I think more broadly, the expansion
of population health statistics into the ways in which we’ve all described is
extraordinarily tight both from a social network point of view and all the web
stuff and then the social determinant stuff. I think it would be interesting to
hear more about because if anything’s happening with the advertent of HIT, it’s
that the understanding of how broad is the patient care experience and beyond,
you know, beyond just the healthcare setting into one’s personal experience and
those determinants of health outcomes.

DR. W. SCANLON: Right. I know, and I think in particular the issue of the
resources and vital statistics, that’s hopefully what we’re going to come back
to when Ed comes here. And this whole idea, I mean, the excitement of his
testimony is just an example. I mean I’ve been feeling sort of another context
that I work in, that we’re limp along with the kind of data that we have, and
we talk about research and we talk about quality measurement and outcome
measurement. And yet, what we have are no where near where we need to be if we
really want to have a serious impact on the quality and care delivered, if we
really want to think about sort of efficiency and, as some people call it,
bending the curve. It’s just not going to happen with the kinds of information
that we currently have because decisions based on these data are going to end
up sort of having the kind of consequences that lead to backlash, and then you
throw back the idea afterward.

DR. BREEN: Bill, do we have time to liaison folks to chime in about the
health what they’re seeing where they sit now about what’s going on and what’s
possible that’s moving in this direction, or should we do that later?

DR. W. SCANLON: You mean like Nancy and Dale?


DR. W. SCANLON: Debbie there? Sure, I mean –

DR. HITCHCOCK: I hope Ed comes. I think that he would say that the 2010
budget, the President’s budget, there was a request for $13 million extra for
NCHS, and there was appropriations language talking about what the money was
going to be used for, and part of it was to go to DVS and to ABL. I don’t know
that they got into the electronic birth certificate or death certificate. But
one of the appropriation language did say that they wanted to maintain the
current – not with the current – well, yeah, I guess it was the
current, they would have to do the retrenchment that they talked about. So
there is money in there for DVS.

DR. W. SCANLON: Right, and I think the important thing to hear from Ed is
that when we had these discussions before, we were talking about this hole we
were in that’s pretty deep, and it’s kind of vital statistics and surveys.


DR. W. SCANLON: And the National Health Interview Survey had to be cut back

DR. HITCHCOCK: And when does this language change restore that to a certain
level. There’s also language about Hanes and keeping that in the field, and I
think money would go to renovating the trailers, that sort of thing.

DR. W. SCANLON: Right, right. I mean, and this is kind of a separate thing,
but I’m on a panel for the Board of Scientific Counselors. They have different
groups together to review some of the NVCHS programs, and we’re looking at the
long term bureau statistics. And there you’ve had a survey that’s been put on
hold until 2010. Now after that, you’re going to ask the question, well, how
comprehensive are these surveys relative to the field of long term care, and
what you get is they’re not very comprehensive – that there really are
some significant gaps, and in fact it’s the most difficult gaps that we’re
talking about in terms of trying to deal with providers that are not so visible
in nursing homes and other kinds of providers are much harder to identify. And
then of course the economy, we have to deal with that which is something we’re
faced with the future. Actually, Larry Green, introduce yourself for the record
as well as Virginia.

DR. GREEN: I’m Larry Green, University of Colorado, member of the
subcommittee, and I have no conflicts.

MS. GREENBERG: I’m Marjorie Greenberg, National Center for Health
Statistics, CDC and executive secretary to the committee.

DR. CAIN: Virginia Cain, NCHS.

MS. LUCAS: Jacqueline Lucas, NCHS.

DR. W. SCANLON: Thank you very much. Now we were hoping for Ed and Walter.

MS. GREENBERG: Walter is probably across the way at Standards. So we’ve got
to slice him in half. But Ed –

DR. CAIN: Ed will be coming down, but he’s in the midst of an Atlantic
crisis at the moment. He’s on his way.

DR. W. SCANLON: Okay, good. All right. Well, the reason we wanted both of
them is because we were going to talk about this whole issue of resources, and
there’s a letter that Walter had drafted. So we would like him to be here as we
discuss it.

MS. GREENBERG: Well, maybe when Ed comes in, we could get Walter, too,
across the hall.

DR. CAIN: Ed gave me some guidance on that. So if it comes up before he gets
here, we can talk about it. But it would be better if he were here, obviously.

DR. W. SCANLON: Well, we will – let’s rearrange the agenda to try to
accommodate sort of the Atlanta crisis. Any other sort of points about our
February hearing and things that you would want to think about communicating

DR. BREEN: Do you want me to give a little bit of an update from what I


DR. BREEN: From what I know which, you know, I don’t sit at a high level. So
what I hear is scatter shot. But I work in a surveillance program in the
Division of Cancer Control and Population Sciences at NCI. So I try to track

And one of the things – and Dale is more involved in this than I am,
but healthy People 2020, the framework is being developed. There are two sort
of parallel committees. There’s an internal committee of federal government
employees that are working on the framework and also objectives, and I think
there are going to be goals as well. And then there’s a committee of
academicians, I’d say, or an external committee that’s also doing pretty much
exactly the same thing, and at some point they will all be coming together. And
I’m not sure how that will all be negotiated. But that’s coming up.

And then the 2010 objectives and goals will be evaluated using the 2008
data, and that will be published pretty soon. Then a big thing that’s happening
at AHRQ and NIH is comparative effectiveness analysis. Quite a lot of money
went towards that, and I’m not sure how that all came to be. But there were
certainly Tom Daschle’s book had suggested that comparative effectiveness
analysis was very important. And I don’t know if this money was allocated when
it was still thought that he would be the DHHS Secretary. But in any case,
that’s moving forward. And so a lot of analysis on that is being done.

There’s also a lot of people are talking about the use of IT, and they’re
talking about how IT is going to save money. And one of the things that we
might want to talk about that I think is missing from the conversation is
exactly how IT would save money because by spending money, you don’t save
money. But by using – getting the data and then using the data, not
there’s a gap between putting IT possibilities in every doctor’s office and
returning that to the public domain somehow. But that were to happen, then of
course is the possibility of observational studies comparative effective
analysis, all kinds of systematic studies then in fact could help us figure out
what are the procedures that make sense to continue to cover versus not.

And so I think that I haven’t seen that discussion or those points made, and
it might make sense to include that in some letter that we move forward because
I know that we’re interested in health IT and medical records –- IT
medical records.

MS. GREENBERG: Have you seen the committee’s work on meaningful use?

DR. BREEN: Mm-hmm.

MS. GREENBERG: Of electronic health records?

DR. BREEN: Mm-hmm. Does that talk about this? I mean I could see where it
would from the title.

MS. GREENBERG: It touches upon population health benefits.

DR. BREEN: Okay, because I haven’t seen it in the newspaper, in the mass
media. That’s what I was talking about, and I think it needs to be part of the
public discourse.

DR. GREEN: Another question from –-to follow up on this morning, I’m
working at NIH was Mark, I believe, this morning that asked the question on how
the CTSA enterprise at NIH and focus on translational research is going, and
how that would nex up to information technology and community based
connectivity, all that sort of stuff. Is much going on there? Is there a
discussion there of any sort?

DR. BREEN: CTSA – what does that stand for?

DR. MIDDLETON: The Clinical Translational Sciences –

DR. BREEN: Oh, okay. I don’t know. I should know that, but I don’t know much
about that because I work in population sciences. And –

DR. GREEN: Well, see, that’s just my point. That’s the reason I asked the

DR. BREEN: So I don’t think that other people would know. I don’t have a
level in me about that.

DR. GREEN: So the March model that’s working in my head at this point
pertinent to this committee is we’re assuming population health. We know for a
fact that billions and billions of dollars invested in NIH have not improved
population health the way we think they could and should. NIH agrees. They say
we need something else. Maybe it’s translational research. Maybe if we made
some investments in our research infrastructures to do translational research,
we could do better. That really means creating new ways of doing research,
doing new data exchanges, there are new data requirements there, and there are
new data possibilities there for information that don’t exist today which
should exist, according to the corrections of NIH on research and this CTSA
stuff and what we’re working on and our concerns about population health. It
just seems to me that there should be, as you were just saying, that’s a
conversation that’s trying half of us.

MS. GREENBERG: Where is Art, by the way?

DR. W. SCANLON: He was here.

DR. BREEN: That conversation should take place, and there are also some
other population based efforts that are being done where I work like the HMO
Research Network. I don’t know if you’re familiar with those data. But that is
a breast cancer surveillance consortium which is a mammography registry which,
again, is limited in scope but is population based.

So those are the kinds of data collection that we’ve been involved with in
my division, though some of the other divisions are where those other data
efforts that you’re talking about are located. And there’s not a lot of cross
talk. We’re starting to work on grids and what they’re calling – these are
data grids, and they’re – the idea is to set up a framework in which you
can put data. But at this point, they’re talking about metadata. It’s all very
abstract, Larry. Hate to kind to go there. But it’s something that a lot of
money’s getting poured into. If you look at CAB, that is one of the big efforts
at NCI. And right now, there’s an enormous amount of meta data which is
descriptions of data and where you might go to get data without having the data
there necessarily. But just descriptions of, you know, how to so that with the
goal is to get consistency and standardized kinds of data. But then, you know,
we still need to collect the data, and that provision’s not really being made,
you know, to do that. And so that kind of brings me to the NEIS redesign which
maybe Ed will talk about.

DR. GREEN: Well, Virginia can.

DR. BREEN: Okay. And I don’t know if – but I’ve been a bit involved in
those discussions because I was the project officer for the cancer control
supplement to the National Health Interview Survey, and I used the data quite a
lot in my research. But they had an external panel which was asked to review
the NHIS by the Board of Scientific Counselors at NCHS. Were you on that
committee as well, Bill?


DR. BREEN: And they came up with over 20 recommendations. And we’ve been
talking about, you know, what recommendations they might want to move forward
with. It really had left the field right open. But what they did say and I
think maybe what we want to say that you had mentioned before was that, you
know, the first thing they said was that NHIS is a critical resource, and it
has to be preserved. And they weren’t asked to talk about resources, and so
they didn’t say it should be expanded, but that was implied by all of the
subsequent recommendations. Because one of their recommendations – and
this is one that we’ve been talking about with them at some of the other
population science-based divisions within different institutes at NIH is to,
I’m sure, require expanding the NHIS in order to collect data that could
provide at least state level estimates rather than just national estimates
because we really need state level estimates and possibly SMSA or Standard
Metropolitan Area estimates as well.

So that’s kind of the direction where maybe that’s going. But you know, it’s
going to take additional resources. We might want to promote that as well.

DR. W. SCANLON: Right. We have the –

MS. GREENBERG: Is Jim on the phone? Excuse me. Did someone call in?

DR. W. SCANLON: Jim I don’t think is calling in. Mike was here earlier. And
so – no, I mean I think we face the dilemma of sort of our resources here
which is the time sort of issue. And we had talked about looking at the
translational effort before. But then when we were discussing sort of
priorities with Jim Scanlon, this whole issue of health reform and data for
health reform kind of took priority, and then given kind of our ability to have
hearings, we had the two related to it. So you know, the question that we need
to continuously face is how much do we continue to operate at the margin which
I think where we’ve been, and we’ve in some respects trying to fight a rear
guard action against the declining status quo, and how much do we need to
continue to do that versus kind of a broader perspective to turn things around.
And the – I’ll put it on the table. A danger of a broader perspective is
that it’s so broad that it gets ignored. I mean, so I think we’ve been thinking
about the kinds of things that we could say to the Secretary that would be
feasible for the Secretary to accomplish in a reasonable amount of time. And
the issue of bigger reaches, we may be at a point given the Stimulus bill,
given the interest in health reform that we can think about a broader and more
ambitious sort of perspective. But we have to work on defining that.

DR. MIDDLETON: You know, I guess what I would offer is it seems to me that
there’s a couple of things to dovetail with, and one clearly is the comparative
effectiveness work which will require much more attention to populational data
sets and the like to produce than the ability for the comparative analysis.

MS. GREENBERG: Oh, it’s highly unlikely that any of that money will go into
population health.

DR. MIDDLETON: Just kind of show the actions, and then maybe it might will
kind of ooze around. Well, the second thing is obviously as the HIT
infrastructure is rolled out, thinking about ways to harvest what data are
relevant to both comparative effectiveness research and vital health reporting
and new sort of ideas about population data sets. And you know, sort of the
marketing buzz that one might consider is the CTSA certainly, you know,
Harvard, for example, it’s all about bench to the bedside. What we don’t have
is the reverse view which may be equally important. What about from the
community to the patient, you know. So we’re going this way as far as we can
through the CTSA and all of the related efforts. What about starting with the
population and the environmental perspective and all the rest of it and then
barreling back towards the patient?

DR. GREEN: I think there are good examples of that reversing the direction
within the National CTSA community. All CTSAs and CTSA – there are
examples of this where Nancy’s comment about needing to get at least a
statement of their CCTSAs where they’re driving full throttle because they’re
going to target a population that they’re trying to move to health status on
and make a change, and they’re making – they may be replicating something
from the National Therapy Survey, but they’re driving it down to census like
levels and adding 3,000 people to the data set for their community of interest,
their part in the community in the CTSA. What Blackford’s talking about, I
don’t personally I think that’s pragmatic. I don’t think that’s kind of silly
or ridiculous. That’s stuff that’s trying to happen, and there are people who
are struggling with that right now within NIH programs.

DR. BREEN: Yes, we’re trying to support things that are ongoing. And one
thing that we’re exploring now and NCH’s taking the lead, but we’ve got some
other institutes and centers and offices that are interested, the California
Health Interview Survey is modeled after the National Health Interview Survey,
and that provides information for the state which is comparable to NHIS. But it
also provides information at the county level and sometimes the sub-county
level for places like LA and San Diego and San Francisco, large cities.

So a number of people have come to the PI of Cheswick Brown and asked him,
you know, we’d like to do this in our locality or our state, how can we do
this. And so we’re now funding a small study to look at innovative local house
surveys to see what is going on around the country systematically, how people
have developed their own surveys or they’ve used shaded to develop a survey on
that model, or they’ve used Bovis and expanded that just to see what’s going on
and to see where the action seems to be, where the innovation.

And then we don’t really know what we’re going to do with this information.
But we’d like to some sort of orchestration. We’d like to see the best ideas,
the innovative ideas percolate up. We’d like to best practices, some
standardization. But you know, it would be a question of, I think,
orchestration rather than trying to actually fund that from the federal level.
But we’re trying to see what’s out there and work with what’s out there and
promote, as you were saying, Larry, what’s going on anyway to try to make it
into something that, you know, is more comparable across these entities so
that, you know the data collection and the activities that are needed and the
localities are occurring. But inasmuch as possible, we can start to roll them
up as the 21st century’s statistics says into something that is
broader and more comparable.

DR. W. SCANLON: Okay. I mean I think these are the kinds of themes that we
need to pursue, and we’ve all been on the committees long enough to understand
sort of what the role of the committee is. And the idea or you could all think
about developing perhaps sort of a mini-proposal which is like two or three
sentences for where you see sort of this committee kind of suggesting this kind
of innovation in what context. The committee has the role as a data committee,
and so that’s always an important thing, and we also – we bring as was
talked about this morning, we bring the advantage of being from the outside and
bring that perspective to the department. So thinking sort of from these
things, you know, where we can go in the future is an ongoing discussion, but
we want to get concrete enough that we have accomplishments.

MS. GREENBERG: I just wanted to mention that I guess they’ll be calling in
at 4:30.

DR. W. SCANLON: Four thirty, right.

MS. GREENBERG: But Gib and Dan are in the process of doing these key
informant interviews, and I would be surprised if some of these concepts
haven’t come up in their interviews.

DR. W. SCANLON: Right.

MS. GREENBERG: And you know, they’ll report on phase one in September. But
the plan is that this subcommittee if, you know, there are things you want to
take forward from that, could hold some hearings after in the coming fiscal
year particularly, you know, before the 60th anniversary. So I
think, you know, if it can fit in with that, that will be good.

DR. W. SCANLON: There’s no question I feel like we’re in a kind of a
regrouping mode. I agree, I mean we have a lot of ongoing things. But we also
going to need to be thinking about our future. And since we don’t have that
many times that we get together, it’s always good to have this on the table.
But let me now sort of let’s turn back to what was in the first topic. The
issue of resources for both vital statistics as well as certain population
statistics. And we had done the letter sort of in February in part because we
knew that decisions with respect to ARA were going to be made. And we have a
second letter that we prepared Walter’s draft at that time which is more
general and reinforcing sort of this position in terms of that we need to be
very concerned about the level of resources going into health statistics.

I feel like in February we were in dire straits. Maybe someone has sort of
given us a little bit of oxygen since then. I think there’s a question of
whether is the air still sort of –

DR. SONIK: Fiat rejected us.

DR. W. SCANLON: So what we wanted to do, Ed, was to hear from you kind of
how things have changed, where we potentially kind of where we are and what is
sort of important for this committee to think about.

DR. SONKIK: Well, I’ll try to be absolutely succinct.


DR. SONDIK: In February, we had cut HIS in half – actually below half.
We were going to fund relatively few number of months of the vital statistics.
And we were, you know, we had to cut what we’re doing. We had four major
activities, okay, and those take the entire budget and we had cut them to fit
the budget that we had.

And we did not know what was going to happen in ’09. But in ’09, in whenever
it was in March, we got a budget increase. That budget increase enabled us to
do a couple of things – well, three things. One is it enabled us to fund
at least 11 months of the vital statistics this year, and we hope we can do
more. But we’ll have to see exactly where we are.

We brought the HIS back to the equivalent of collecting 76,000 respondents
per year rather than 38,000. So we doubled it. It’s still not where at the
design level, but we brought it back. But that doesn’t mean that we’re actually
collecting that this year. It’s just the way in which we’re collecting because
we couldn’t go back and fill in and so forth, although there are things we
could do. There are things we could. In any case, we’re collecting at that

And we are going to – we had dropped the healthcare surveys down to
just two – the ambulatory care surveys to two, the hospital and the
doctor’s office. Pardon?


DR. SONDIK: Yes, NAMSIS and NHANES. Well, how many people know NAMSIS?

DR. W. SCANLON: Everybody here knows.

DR. SONDIK: Tom Friedman knew yesterday, I’ll tell ya. So I was pleased at
that and NAMSIS in particular. So what we’re going to do is to keep the
hospital discharge survey going. We have a redesigned survey, but we’re not
moving forward with that. And with the help of ASPE, we’re going to, we think
– we’re planning – all these monies are always tentative, initiate a
residential care group survey.

So this brought us out of really being way down to something where we could
add, we could sort of get back to level, okay. It’s still the water’s kind of
coming over the gunnels whatever. But the fact that we were doing better with
respect to vital statistics is particularly important and the HIS also
extremely important. The NHANES was doing okay. It’s a very minor thing,
preparing trailers actually. I mean, but it’s really quite minor.

Then we got the very good news that the President proposed a budget
increase, okay. And that would go a long way towards helping us in ’10. In ’10,
we’re going to have a significant increase in our personnel cost because we’ve
been doing some hiring, and that comes back to hit us in ’10. We’ll continue to
do well with the vital statistics at least as far as – one of the things
we were going to do in vital statistics is cut back the amount of information
we were collecting not on the death side but on the birth side. And we are not
going to do that in ’09 or rather I should say the reason we were going to do
it was to give us, was to free up some money that would be used toward an
electronic vital statistics system as well as on quality control related
activity. Actually, it was a small amount of money is what we were aiming for,
but we still felt – I particularly – I’ll put it on me – felt it
was very important that we invest in the system in addition to paying for the
data. I thought we really had to do that.

So if we do receive the budget increase in ’10, it will help us along those
lines. We won’t cut back on the amount of information that we’re collecting on
the birth side. And again, we think we can do about – well, we think we
can do – there’s a big caveat with this which I’ll come to in a second.
But we think we can do the better part of the year is the 11 months or 12
months. If we don’t collect, by the way, the full year, then we sort of pick up
within next year’s funding and by the month that we didn’t do the year before.

Now it doesn’t take a large diagram to figure out what happens if you
continue to do that. You keep falling farther and farther behind, and
eventually the Visa card just gets denied figuratively speaking anyway. We
would increase the size of the HIS up to its design level. This is in ’10. And

DR. W. SCANLON: What is that?

DR. SONDIK: Eighty-seven thousand. I’d like to see more. But that’s what we
do, and that would give us the kind of national coverage of minority
populations that has been recent. I don’t think it’s adequate given the
demographics of the U.S., but it’s been adequate. So that’s that budget
increase would give us. What we lack – continue to lack is a really solid
sample size on the HIS. So if you ask me what would you like to see, I’d like
to see the sample size on the HIS go from the 76,000 to something on the order
of 250,000. And if we did that, this would enable us to get state estimates as
well as more detailed minority population, particular population groups, get
estimates of those.

And this could relate to the BRFSS and the other – I think actually
what NCI is doing will be extremely valuable putting this together to give us a
picture of these activities in ’09 because what we need nationally is we need a
solid benchmark nationally so that these other surveys can relate to that. You
know, I mean the response rate on the BRFSS is not exactly 98 percent.

DR. BREEN: No, they’re all like 30 percent.

DR. SONDIK: That’s right. So we’ve got to have that sort of gold standard.


DR. SONKIK: Now there’s another telephone survey, Slates, which we do here
which is built on top of the national immunization survey structure, and that
gets the entire response rate, okay, and the way it’s done all the questions
are the same, and they’re in the quality – it’s done centrally so that the
quality control is there, okay. We can control the quality of how these things
are being asked in a very rigorous way. But there’s going to be a lot of
efforts around the country. There’s no question about that. And I used to think
it was sort of a pipe dream, you know, that we were going to need a solid gold
benchmark, if you will, a ruler on these things. But now we’re really into
that. It’s true, for example, with Rick Brown’s California Health Interview
Survey —

DR. BREEN: Yes, it’s 30 percent also. And in the large cities, it’s less.
It’s like 17 percent.

DR. SONIK: Right, right. And we’re able to overlap with them so that we with
our California HIS samples so that we’re actually able to provide quality
control for them. So it’s not like, you know, we need one central place to
collect all of this information. But what we need is coordination, okay, and we
need enough resources so that we can valuate all of these different sources.

DR. HITCHCOCK: Methodological stuff, too. I mean, you’re talking sort of

DR. SONDIK: That’s just the thing I was going to get to that we have zero in
’09 and essentially zero in ’10. Not essentially – we have zero in ’10. We
have no extramural program, okay. We do evaluations — staff internally here do
evaluation of what it is we’re doing. But we should have a grant program, an
extramural grant program to develop first of all, look at the quality of what
it is we’re doing, essentially quality control and develop methods. The methods
– clearly, methods are going to be changing. Down the line, the idea of
doing one survey with one mode, you know, there are going to be a variety of
different modes that we’re going to be using. And it’s still not known how to
really put these things together in a rigorous way, and that’s what we should
be. I mean, it’s a federal statistical agency. These methods should be the
solid methods. It doesn’t mean we collect all the data for everybody. Jennifer?

DR. MADANS: You mentioned a million dollars we got back from NIH to buy back
some of the ’09 –

DR. BREEN: It’s just proposed, isn’t it? Did you get it?

DR. MADANS: No, we got it.

DR. BREEN: Oh, you got it?

DR. MADANS: Well, we don’t have it in our hand.

DR. BREEN: Okay. Cool.

DR. SONDIK: Let me just say what the caveat is on ’10, okay, and this is the
caveat I think everybody would agree with in the room. This was proposed. I
have no idea what’s going to be disposed. I don’t know. And you know, I think
it’s terrific, and I have to thank the NCVHS and our collaborators, you know,
NIH and elsewhere, the friends of NCHS organization. It’s just incredible the
support that we’ve really been getting, and we wouldn’t be in the budget for an
increase if it weren’t for all that.

But in terms of whether we really have enough funds to adequately carry out
the mission, particularly the mission as outlined in the vision for health
statistics, I mean we don’t. And the crucial areas, I think, are that we need
more detail, okay, on the multiple populations in the U.S., okay. I don’t want
to use the term sub-population. That bothers me. I mean, it’s trivial. It just
bothers me because it makes it sound like there are populations that are sub
others. I mean this is – we’re just getting, there are so many particular
populations, and they all cry out that they want, they need their local –
in effect their local data. And so I think that’s the critical need.

I think the extramural activity is absolutely a critical need. And ideally,
we should have a program where we do what we’re doing to a small degree with
NHANES. We have a portion of the staff of NHANES are consulting with people
around the country on the application of the NHANES methods to particular
areas. Now it happened in New York City. They were seriously considering doing
it again. The commissioner got a new job of the CDC. But he said he sees a
major reason to do that again to evaluate efforts to control blood pressure and
cholesterol. He says that’s the only way to get that. The problem is he doesn’t
think they’ve done enough intervention to be able to evaluate at this point. He
said that in his –

DR. W. SCANLON: Garland?

DR. LAND: It’s certainly exciting news that this President starts it for
2010 in terms of the vital statistics area because that means that we can
potentially collect the 2003 data on this. I think what we’re still missing is
the fact that there’s about half a dozen states that even though the money may
be there to collect the data, the data isn’t there yet in terms of the 2003
data items. And so we need to find some way to invest in electronic verse
systems which would give us the 2003 data items for a relatively small number
of states, and some of them already have reengineered their systems so that the
amount of investment would be very small for them. There’s only two states
right now that I know of that don’t have the money to move forward to the 2003
data items on their own in terms of a reengineered system.

So we’re really talking about a very small amount of money to have the whole
United States covered with the standard certificate data. And that’s why –

DR. SONDIK: Well, I didn’t mention it. But an electronic system for vital
statistics is what I consider the big piece that we do not have at this point.
And we’re going to get the resources in ’10 to do it. And we’re not going to
Stimulus. It appears Stimulus money, we don’t know for sure, but it looks the
way the Stimulus is defined that that just falls through the cracks. It’s just
not in the ONC’s province, although I happen to think it is. But the way
they’re looking at it – and we’ll see. We’re not reading it done. It’s not
prevention which is the other big CDC piece, although I don’t know where NIH is
getting the money but it’s probably out of prevention.

And I think very much it is part of comparative effectiveness research. But
that also appears to be defined narrowly. But we’re still trying on that. But I
must be honest. I just don’t think it’s going to pan out.

DR. BREEN: We’re off life support, though.

DR. SONDIK: Yes. Oh, no, that’s good. But I’m just saying, you know, you
think –

DR. BREEN: We’re off life support.

DR. SONDIK: That Stimulus money, you know, you say, well, we’ll be able to
get something. But it’s this – to me, the electronic system is to me, you
know, many people say we know birth is one side of the record, death is on the
other side.

DR. BREEN: The electronic system, is that shovel read?

MR. LAND: Yes.

DR. BREEN: It is?

DR. LAND: Yes, you can get the money out to the states real quick.

MS. GREENBERG: It was initially in the high tech, but it fell out.

MR. LAND: Talking about cancer, there’s a lot of data items in the 2003
standard certificate on both the birth and death side that relate to smoking
during pregnancy or in terms of death. I don’t know if there’s any possibility
of working with the Cancer Institute to see about that.

DR. BREEN: ACS are the people to work with, the American Cancer Society.
They’re very good at getting those things done.

DR. W. SCANLON: Walter?

DR. SUAREZ: Well, I guess the question is whether the health IT priorities
for population health, I mean, there’s vital statistics, you know, the whole
electronic move of vital statistics. But there’s a number of other areas
related to the use of health IT population health and public health. And I
mean, I know that McFee was looking at some priorities to bring forth in their
discussions around the use of discretionary funding and, you know, providing
some of that priority areas was something that we were looking at. And I don’t
know if this committee might be one place where some of those discussions can
happen where not just the book ends of, you know, standardization and movement
towards electronic systems for birth and death, but also a number of things in
between bio-surveillance and a few other things might be one of the things that
we want to focus as a committee in terms of recommending specific activities,
again related to health IT and population health. So I don’t if there’s –

DR. SONDIK: Well, from my point of view, that makes great sense to me
because down the line, I mean, these are going to be some of the sources of
information. And if we may be getting that direction directly or it may be that
it’s going elsewhere, okay, into these other data collection activities, but in
any case we need to be aware of that and there needs to be this coordination at
the department levels.

DR. SUAREZ: Yes, it’s almost like the need to articulate as a committee here
their vision for public health and population health and in drawing health in
the use of health information technology. I mean, I think we have JPHIT which
the Joint Public Health Informatics Task Force that is, you know, a group of
about seven of the largest public health associations, local, state
associations, and we’ve always been discussing and talking about formulating
sort of the vision for the role of health IT in public health and the role of
HIT as well. I mean I think this committee is one group that can bring that
vision forth and even, you know, invite actually to a presentation those seven
organizations to talk about it. But –

DR. W. SCANLON: I don’t know if Dan and Gib are on the phone yet, but I mean
this is in some ways –



DR. W. SCANLON: There’s almost – it’s almost like a seque, but we’re
not quite ready to start sort on the 21st century vision. But an
issue in my mind always for this update was the idea of what’s changed since we
did this the first time, and part of it is IT. And so how do we modify the
vision given that major change in the environment. Marjorie?

MS. GREENBERG: Well, I don’t disagree with what Walter said. But I think
bio-surveillance will percolate to the top. But I think when you get – if
you look at, I think, John Halamka sent out all of the functionalities or
whatever, the basic set of proposed information needs that for his meaningful
use might meet, but he co-chairs the new standards committee. And really, the
only public –- it may have said bio-surveillance, I’m not sure. But it
said public health case reporting, and of course it didn’t say anything about
biostatistics. But if you think about case reporting, I mean case reporting is
meaningless if you don’t have any denominators. And what is the ultimate, as
you said, case? The birth and the death, and that’s what provides the
denominators. And I really don’t think too many people outside of this room get
it. And I mean, they get bio-surveillance. They get case reporting of let’s
count the number of swine flu.

DR. SUAREZ: I think perhaps we haven’t articulated that vision in the
context of the new health IT revolution that we’re experiencing.

DR. MIDDLETON: And attached some value to it.

DR. SUAREZ: And attached some value to it.

DR. MIDDLETON: So that it matters to somebody.

DR. GREEN: I think we might be segueing into this next conversation. I’ve
really taken what you said a few moments ago about you’re being the nation’s
statistical agency but not having basically an R&D program for the methods.
That’s a very serious indictment from my perspective at least from what Walter
is saying. So we sit here relatively confident that there are social
determinants of health and disease. There are a few medical ones – not all
that many actually, but there are some medical ones. We know that there is a
burgeoning set of genetic ones. And our current systems do almost nothing from
the genetic point of view. So I like that Foege and McGinnis and Mokdad’s work
that says, you know, the reason you die before you should have or you suffer
when you didn’t have to about 40 percent of that variance is your behaviors,
about 30 percent is your genetics, about 15 percent is your socioeconomic
situation, about 10 percent is shortfalls in medical care, about 5 percent
environment, and that’s the air you breath and that sort of thing. If we
proportioned our surveillance around the way we go about doing population
statistics would have to go an incredible revolution and redesign. So the way
this connects up in my head today is that maybe there’s a sweet spot somewhere
between the notion of a mean to innovate in statistics methods at this
particular juncture with the elaboration of the National Health Information
Network that is approaching timeliness. If you’re off life support and you’re
only on surgery now, maybe we should do some discharge planning. And I really
would like to see us have an opportunity to consider if it’s possible to hook
up innovation in health statistics with what’s going on with the redesign of
the healthcare delivery system and the redesign of the information systems
undergirding it. This is not smoke and mirrors. This is happening. It’s going
to happen. I think we should behave as if it’s a sure thing. And what we don’t
know is really how to take advantage of it. I mean, just the teaching is
something that totally eluded me. Where’s the intellectual works power.

DR. W. SCANLON: I mean I agree with you completely. I mean I think that
there is an opportunity out there, and it could go untapped for all in time
unless someone takes advantage of it. So I think it’s something that we should
be thinking about. Before we switch to the 21st Century, let me both
ask a question and propose something in terms of our next steps. The question
is sort of where the BSC is in terms of some of these issues you’ve raised. I
think the letter that we drafted in February in some ways and it’s been
superseded by the events we would have to acknowledge, sort of the change in
events. But –

MS. GREENBERG: The second letter?

DR. W. SCANLON: The second letter. But you bring on also kind of a much
broader and richer array of things that we need to consider and do, okay. And
so moving in that direction, being more specific, sort of having a stronger
proposal, not, you know, everything in mesospheric total detail, but I’m
thinking sort of a letter in September that we think about over the summer
through conference calls and come to some agreement about some important
elements that should be emphasized because if I remember right, the budget
process for 2011 will be going on sort of around that point in time. Be
thinking about getting sort of issues on the table at that point in time would
prove to be important because in some ways, as you know, we talked about 2010
being iffy. We write to the Congress. We write to the Secretary. And the budget
is now in the hands of the Congress. And so in some ways I think it’s most
important that we maybe appear more thoughtful and more detailed and sort of
proceeds. So — and I guess, okay, Walter, did you–

DR. SAUREZ: Well, it’s just a comment in terms of the process. Would it be
useful or valuable to hold some – I mean, we’re coming up with some more
refined and more specific set of recommendations, right? I mean that would be
the intent. Would it be helpful to have some backing of a hearing or some sort
of, you know, session with – I’m not talking about a two-day hearing, but
a half a day or something like that that would provide us with input and
insights on current issues and be able to document those and then bring it
back. In fact, I mentioned JPHIT as one of the sources because they are seven
organizations ready to jump and provide input.

DR. HORNBROOK: Your point is probably because it would then give us in some
ways information that will have direct relevance here. So I think –

MS. GREENBERG: Right. I mean the question is whether you can have a hearing
before September and how important it is to do this in September rather than in
November. They – well, we’d let them speak for themselves as I said. What
they’ll be recommending, I think, would lead to one or more hearings which
also, you know, you could decide on something else. But I think it would be
difficult to organize a hearing before then. You could – I don’t know if
it makes sense to have a teleconference with, you know, an open teleconference
with maybe those public health organizations or, you know, that’s certainly
something you could consider.

DR. W. SCANLON: I mean I think that we should hear from Dan and Gib, and
also I mean for me there are things that have face validity, and we’ve heard
about some of them in the room today. In some respects, we don’t need
reinforcement to be able to feel confident about what we’re saying. And the
FACAs are created because you want a political FACA in addition to the process
the FACA’s engaged which is to bring in some sort of more outside certain
information. So I think at one level there are things that we could say.

There’s another level where we can reinforce both what we said and maybe
expand upon it by having a hearing. But we’ve also got this ongoing process
with the 21st Century Vision, and I think there’s so much overlap
between them that we probably should think about that. And then I guess it all
goes back to my question about the BSC and in terms of where they may be sort
of thing because I think we also want to consider how do we complement them.
NCVHS can give up the role of being heavily focused of NCHS, and the BSC is now
playing that role.

DR. SONDIK: Well, I mean the BSC continues to look at the programs in detail
in terms of how they’re actually functioning and are the right methods being
used and emphasizing some of the areas of development, but particularly on the
methods and on the quality side. But we’re also sharing with them that we’re
considering major redesigns – and I say considering, I mean it’s really
very early, but we’re considering redesigns of HIS and NHANES and the upfront
idea that technology’s changed. There may be new ways of doing this where we
can do these things more efficiently, and we’ve started this as an in-house
activity. And I told the BSC at the last meeting that we obviously wouldn’t do
all of this in-house obviously, but we’re just sort of getting our feet wet.

But we’re also going to have a third group that is looking at how we could
combine not the two surveys but look at it more from the standpoint of the data
that’s being collected and just forget how NHANES works and how HIS works and
say, all right, if we’ve got to start in novo how would we do it, okay. By the
way, I didn’t mentioned that today is the 50th anniversary of NHANES
this year. So you should reserve September 29th in the afternoon
here for an event, and then we’re going to have another event after that. But
we haven’t fixed or set a date yet. It’s 50 years. So my point of bringing up
50 years is clearly it looks nothing like our great grandfather’s NHANES.
There’s no question about it. But we really need to think about how we would
redesign this.

This all fits rather nicely with contracting issues and all of that. So but
that’s where sort of the BSC is. The BSC is really not looking at the kinds of
things that you were –

DR. W. SCANLON: I thought there was, though, a BSC subgroup that was looking
into some kind of mission issues.

DR. BREEN: There’s a panel, the external panel recommendations. I had
mentioned those before you came in and the report. In fact, I sent a copy to
Cynthia and Don thinking that maybe this group would be interested in it. Is
that okay?

DR. W. SCANLON: Absolutely.

DR. BREEN: Okay. I mean I thought it was public. That was my understanding.
So we thought it would be —

DR. CAIN: HIS report as well and what I think you’re talking about is the
subgroup that’s formed on vision and mission within NCHS and where it should go
in the future.

DR. BREEN: Oh, okay, so there’s a fourth –

DR. SONDIK: See, I guess I view it as kind of where you start from, okay.
They’re starting sort of right there by the surveys, okay. I see you starting
more from that report, okay, and thinking of it from the standpoint of health
reform, the standpoint about IT changing and so forth. And so I think it’s more
like looking in from outside whereas the others are kind of looking out. It’s a
different perspective.


DR. HORNBROOK: Can we start from the model that Larry just gave us a little
air summary of and also match it up with marginal productivity. Is there any
room in the strategic thinking about NCHS to start thinking about tracking
environmental determinants of health, genetic determinants of health, health
behaviors so that there is a strong cadre of genetic epidemiologists here in
the center who are looking at the relationship between genomics and health and
the relationship between environment, genetics and health, et cetera. That’s 20
or 30 years down the pike, but –

DR. SONDIK: Not so, I don’t know, maybe everyone wants to comment. But not
so far down the pike.

DR. MADANS: You know, we do a lot of analysis of our data. But primarily
we’re not a data analysis shop. We’re a data collection shop. So right now we
have genetic data. We make genomic data available. So we are looking at geno
facts, geno tracks. We collect environmental data. We link our data to
environmental data.

DR. HORNBROOK: But is it sequential gene sequence data or just family

DR. MADANS: No. This is – we have – NHANES has, we’re trying to do
the whole geno –

DR. HORNBROOK: Good, good.

DR. MADANS: So we have pieces in all of that. I think the overall question
that the BSC group is dealing with and I think we’re thinking about is how do
we move it all forward in a way that maximizes what we get out of it. Is there
a better way of getting some of the biologics. But we’re assuming that we’re
not, you know, going to wake up one day and not do surveys, not do vital
records, that there’s going to be some consistency in what the center’s been
doing since 1960, but how you kind of coordinate and rearrange it. So I think
all of the things that were mentioned about social determinants – actually
the center’s surveys were found in our social determinants. I think that gets
lost all the time. A huge amount of social determinants –

DR. HORNBROOK: Yes, because we spend most of the time talking about
utilization data.

DR. MADANS: You know, and that’s a small part of what we do. We do have
genetic information. We have the environmental information. We do get records.
So we have a foot – lots of feet in all of these areas. The question is
how do you move and take advantage of what is happening. So we still go to the
hospitals or the doctor’s office and we’re saying, okay, we’re writing down
everything that’s happening at this visit. Well, hopefully, in some number of
years, we will have another data source that we can use to still collect that
information, and maybe that data source allows tooling to another data source
that we can’t do right now that will make the whole greater than the parts. And
so that’s really, I think, where the BSC is, where our data programs are. We’re
thinking down five, ten years of what we think the world might look like, can
we start moving in that direction so that we’re a little bit ahead of the
curve. While we’re still collecting the old fashioned way because right now
there aren’t electronic medical records that we could get national
representative data on. So I think that’s where we are.

DR. HORNBROOK: Well, I was just thinking. You look at the high school
publications of their valedictorian and salutatorians, and it’s an anti-diverse
population. They’re not white, heavily Asian. So there’s something in that
cultural environment, in that environment that creates the ability to succeed
in academics that somehow other families are missing. That’s part of health,

DR. W. SCANLON: Since we’ve been invoking Dan and Gib, perhaps we should
turn it over to you and get an update on where we are with respect to the
21st Century Vision update. It fits so well into the conversation
we’ve been having that it’s time to give you some air time.

Agenda Item: Health Statistics for the 21st

DR. FRIEDMAN: Thank you. How’s the reception down there?

DR. W. SCANLON: Very good.

DR. FRIEDMAN: Okay. Gib, are you with us?

MR. PARRISH: I am right here.


MS. GREENBERG: You sound as if you’re in the room, both of you.

DR. FRIEDMAN: Well, we are in spirit. We’re going to be relatively brief,
and we really don’t have much more to say than what we provided to the
committee in our status report. In April or May –


DR. FRIEDMAN: In April or May, we worked with Marjorie and Debbie and
members of the subcommittee on first of all selecting a cadre of potential key
informants, and we solicited suggestions. It was essentially an iterative
process. We made suggestions. Marjorie and Debbie made suggestions, and then we
whittled it down. I think we ended up with 16 names. We went through a similar
process in terms of the topic that we were planning to discuss with the key
informants. Basically, we made suggestions, and several of you made suggestions
as did Marjorie and Debbie.

Each of the 16 were sent a pretty detailed letter invitation that Marjorie
sent out. And then we – we meaning Gib and I – followed up with a
follow-up note. And based on that, so far we have received 13 positive
responses. The whole process took quite a while. We started the interviews the
last week in May. And so far, we’ve conducted six of them, and we have at least
seven more to go. I say at least because there may be one or two other people
who we may decide to add.

So far, it is a very diverse group, and that is working very well because at
first glance at our notes and we have not yet –- Gib and I have not yet
reviewed our notes together. Basically, the way we do it is both of us are on
the telephone at the same time, and generally Gib has been the discussion
master as it were, and I generally have been taking notes. So then we switch
off sometimes. And because the people who we’re speaking with really come to us
with such different roles, what we’re hearing varies a great deal from person
to person so far, and there’s not a lot of overlap, and we feel very positive
about that.

But so far, we’ve talked to Terry Collin from the Indian Health Service
who’s always just wonderfully helpful, and actually I first spoke with Terry
around four years ago when I did a project for NCHS on national strategies for
electronic health records and she is the CIO and she’s just terrifically

And then we spoke to Thomas Riley from CMS, Elliot Fisher from Dartmouth
Medical School. I’m just going through my schedule here. Mike from Reliable
Fence Company, no that’s –- William Corey from CDC, Dr. Hacker who’s the
state health officer in Kentucky, and this morning or yesterday morning, we
spoke with David Blumenthal.

And still to come, we’re speaking to Ronnie Zeiger from Google. Tomorrow,
none other than – Ed Sondik, we’re looking forward to speaking with you on
Friday, and we also have interviews set up with Jim Rakowsky, Raynard Kingpin,
Carolyn Clancy and Farzog Mostashari.

MS. GREENBERG: I’ll say – you know, agree we got immediate response. I
mean, the response was excellent. People just were very receptive and responded
almost by return email when we first –

DR. FRIEDMAN: Yes. The responses have been terrific. And one thing that
we’ve been doing is we send as Ed can attest, after the interview time is
scheduled, we send a detailed – oh, it’s probably around a two-page letter
explaining the project with the questions we want to go over with the person
and the list of the eight priority recommendations as well as the guiding
principles. And we encourage folks to read that before the interview.

And then the day before the interview, we send them a confirmation email
basically just to remind them to please read that letter because most of the
people have read the letter and are very well prepared. There’s been one
instance in which they didn’t, and clearly it’s much more productive and much
more efficient and we’re very careful of their time because we really, you
know, these are obviously busy folks and we don’t want to take up any time
unnecessarily. And the five of the six we’ve spoken with who have, as it were,
done their homework on the conversations have been very efficient.

So we will definitely or I shouldn’t forget –- we certainly have every
intention of completing the interviews in June. And as I said, we may add one
or two. And then our plan is to immediately review where we are, review what
folks have said in July, you know, with some help from Marjorie and Debbie and
hopefully Ron Weinzimmer, as well as from our literature review. We’re going to
sort of codify our thoughts on changes since 2002. And then in
August/September, we’ll work on our brief working paper report.

And what we sent to you in the status report, that last page has an outline
of our current thoughts on the brief working paper report. And basically what
we plan to do is have for each of the eight priority recommendations is
highlight major changes related to the particular recommendation since 2002 and
then consider options for the recommendations. Is the recommendation still
appropriate? Should it be adopted? If so, how should it be adopted, and are
there any new or later recommendations that should be added.

But I mean certainly what we’re going to be doing is not making
recommendations but putting on the table for your consideration options for
adopting and changing the recommendations.

DR. W. SCANLON: Okay. Questions?

MS. JACKSON: Hi, Dan and Gib. We’re been calling you D and G in the office
or the boys. It’s a very fluid process, and I just wanted to make sure
everybody knew from the beginning from the design they realized from the input
from the committee at that last meeting and people provided great input, and we
even went back and made sure to beat the bushes to get your feedback. And with
that, it is not just a review of where we were in 2002, but Dan and Gib have
made it very clear it’s all this rich input from people all over the country in
various phases and ways of life. And look at IT, as Larry was saying, there’s
so much new out there. The landscape is changing so much, and it’s just this
bridge that we’re trying to accomplish as a frame of reference for now to get
into that whole future.

And so I’m just very excited about the fluidity and the expansiveness and
the potential for the document. At the time, we’re just laying the groundwork
for this in September, and we’re unscheduled so far. We have something for the
full committee. And eventually we’ll find out how we can pull the subgroup
together and get for scheduling and conference calls and all. But we’ve been
working generally with Bill and Don for kind of check-in sessions. But we’ll
get in conference calls for the subcommittee in August in preparation for

DR. W. SCANLON: Okay. That’s good because actually what I was going to ask
was that they don’t have to be polished, but if we could be thinking about sort
of what preliminary conclusions that are as you’re coming closer to September
and the subcommittee would have a chance to think about those because I think
they’re going to play a role in affecting what we decide to do in September as
well as a subcommittee. So I think that’s great.

And as suggested, maybe among the list of people that you talk to,
Atolowande(?) would be an incredibly good sort of choice if you could get him
to take some time and do this kind of thing.

MS. GREENBERG: Tell him how much you loved his New York article.

DR. W. SCANLON: So, okay. Anything more, Dan or Gib?

DR. FRIEDMAN: No, not really. I mean we have as Debbie was saying, we have
appreciated the iterative aspects to date working with you, and we’d certainly
like to continue that. And we will do our very best to provide the subcommittee
with some sort of a draft, you know, certainly enough time prior to the full
committee meeting in September so that suggestions can be incorporated.

DR. W. SCANLON: Great. Okay, thank you much.

DR. FRIEDMAN: You’re welcome.

DR. W. SCANLON: Before we turn to social determinants, I’d just sort of lay
out sort of if anybody has any objections to my proposal which is that we think
about the themes that we would like to emphasize. We communicate that, say,
within the next month through email among ourselves so we can start to use this
process. We’ll schedule a conference call maybe sort of mid to late July to try
and develop this some more. The idea is to both where do we need to go in terms
of –- I feel like Ed gave us a shopping list here in terms of things that
I feel have face validity to me. But you don’t run a statistics enterprise
without doing some of these things, and we have been doing that.

And then sort of the issue of a future world which is going to be
transformed in very fundamental ways, and that there’s going to be interplay
between that and this 21st Century Vision. So we may want to hold
some of that. I think that for –- we want to have on the table for
September the idea that is there something about what commitments are going to
be made over the next year in terms of resources that we feel is important to
say because that process is under way, and September is –- we’re getting

DR. SONDIK: It’s amazing how soon it is.

DR. W. SCANLON: So if that’s acceptable, then I think we should all
hopefully take that on as something we’re going to do. The other thing is that
in terms of the two hearings we had on data for reform, if there are themes to
come out of that that you want to suggest we work on, suggest those as well,
and we’ll have those as part of our conference call.

MS. GREENBERG: I just going to say we will send to everyone on the committee
and on the staff of the committee, subcommittee members and staff the two
letters that went out, the one inviting people to participate in these key
informant hearings and then the interviews or discussions, as we call them, and
then the follow up that people got because we worked closely with, well,
particularly Don at the end because you were on leave. But in any event, we
worked with the chairs.

But I think in thinking about this, it would be helpful if you all have that
and know what the content is that they’re discussing and even refresh your
memory on what the eight priority recommendations are that they’re focusing on
and all of that. So we’ll do that after this meeting.

DR. SUAREZ: Two quick questions. The timeline for this whole project, is it
September when the subcommittee would deliver a report, or is there something
beyond that? Because it looks like some of the recommendations relate to future
work done in public care.

MS. GREENBERG: Right. We did this – when we first thought about doing
this, we basically just talked with Dan and Gib and said, you know, we’re
thinking about revisiting this and we are looking towards actually the
60th anniversary celebration. But you know, well, we said it’s going
to fit in with that more or less. But – and they gave us a full proposal
of what they thought would be needed or what they felt would be the most robust
way to approach this without breaking the bank.

But even then in light of the budget, it was more than we could chew –
take on. So we cut it into – we put it into two phases. We said okay, the
first phase, let’s have, you know, some of this conceptual background work
honing in on priorities, literature review as to what’s the status of these
recommendations, you know, and key informant interviews, and that phase would
go until September.

So they will deliver their report which I think I would see it as a
consultant report. I think we should stick to that September deadline even if
it’s kind of more of a pretty final draft. So it’s not so much a report from
this subcommittee or even from the National Committee. It’s a report to this
subcommittee and to the National Committee, and I don’t think we would –
well, you can see what it’s like. But probably we wouldn’t, you know, just pass
it on or whatever to the Secretary.

And then – and the basis of that, you know, gardening work as it were,
they would make next steps as to what to plant as essentially either future
workshops or future hearings to explore some of these things more. So we
thought if we broke it into two fiscal years, frankly we could afford it, and
then also it would work better that way, too, because we didn’t know what phase
two should be until we’ve gone through phase one. So that’s the situation we’re

Now at phase two, if there is a phase two – and it sounds like, you
know, it seems like there probably would be, may not be completed by a year
from now which is the June hearings – I mean the June celebrations, the
60th, but we would have something to certainly from phase one and
hopefully from phase two to bring forward there. But I think that will really
be up to the committee, and of course, the resources. But that’s why we did it
that way.

DR. W. SCANLON: Right, and I mean I agree with you completely on all this
seeing as we’re going to get a report from Dan and Gib, and it’s going to be
the starting point for what our work on some of this stuff really entails which
is first deliberate on what they’ve said and then think about how we need to
build upon that.

MS. GREENBERG: And we can probably – and I think we can continue to
engage them —

DR. W. SCANLON: Right.

MS. GREENBERG: Into phase two.

DR. W. SCANLON: Right.

MS. GREENBERG: But the subcommittee would be much longer.

DR. W. SCANLON: And there may not just be one thing that comes out of it.


DR. W. SCANLON: Because I think, again, going back to meaningful use, I
think of meaningful use as this evolutionary process, and we need to think
about when we identify the timely moments to weigh in. And so, you know, there
may be something sooner rather than later in that regard, and doing some things
will be important.

DR. GREEN: I guess I have a question for Marjorie mostly, I think. I’m
wondering if we also don’t have an opportunity that could be seized right after
our September meeting when we have these opportunities for these interviews
with the former chairs. If we had this consulting document in hand and we had a
chance to mull it over and discuss it –

MS. GREENBERG: It would be the next day, of course, that we’re meeting with
the former chairs.

DR. GREEN: If there might not be an opportunity to insert writing of that,
getting some reactions to some pretty savvy people who, you know, live this and
have –

MS. GREENBERG: Yeah, well, that’s why I discouraged them for the most part
from interviewing the former chairs because I said we’re going to be
interviewing the former chairs, Susan Kanaan, actually. But I think this would
be good fodder for that absolutely.

DR. GREEN: I guess my question is, are there other demands on that time and
those interviews that this would interfere with or bring up or can this be
inserted in to have yet another subrecord.

MS. GREENBERG: You know, actually with a very general conversation so far
about how those are going to be done, and part of them is sort of an oral
history that they’re going to be taped. And so we’re going to have individual
interviews. Actually, every former chair that we know of is coming so far, we
think, to Charlottesville. But they –

DR. GREEN: Are there any former chairs you don’t know of?

MS. GREENBERG: Well, I know of at least one who I think is alive, but we
haven’t had any contact with him. So then there are a bunch of them who I don’t
think are with us any more. But so anyway, and but we always said we don’t want
this to just be history. We want it really to be forward thinking, and this is
a lot of forward thinking people. I mean, Don Debner, Judy Miller Jones, you
know, John Lumpkin, what have you, Carl White obviously, and that’s why we’re
doing it down in Charlottesville.

So we’re having a call next week with Susan about, you know, because that’s
why when you said September isn’t that far, I’m going yeah, you know. That
seemed like such a long time ago when we first invited them, and it’s really
around the corner now. And we could have a preliminary call with her, and then
we could have a call with the Populations Subcommittee if you’d like, I mean,
because it’s really kind of an open book. I know she has some ideas about
– well, there are going to be two parts, the individual interviews, and
we’re going to have a discussion among them that we’ll also orchestrated and
taped and videotaped, I think. And I think you’re going to be there, too,
aren’t you? And particularly, that discussion among them could deal with some
of these issues.

So we would welcome your input on that.

DR. W. SCANLON: I think after you talk to Susan, if she has something on
paper, you could show that and then we would have a more –

MS. GREENBERG: Right, to get started rather than – that’s why I didn’t
say not the first call.

DR. W. SCANLON: That would be, right.

DR. SUAREZ: What I was trying to, I guess, get myself into – I was
trying to put around what is the outcome of this project. In other words, my
hope was that we were going to come up with – and I don’t know what to
call it. I was starting to call it the 20/20 vision meaning the year 2020, not
the 20/20 vision for health statistics. I mean, some sort of a updated but
formal and big kind of a here is a vision of the next ten years or whatever
since we’re going to get into 2010, I guess, but that takes into account all
that is happening with health IT. I mean, this is the moment. This is the
– if we can do that and go and just make it kind of a document that this
consultant and then have a few hearings and then some letter, I think we’re
missing the opportunity. We have the –

MS. GREENBERG: I think that’s actually – it was our ultimate intent.

DR. SUAREZ: Okay. I didn’t get it that way.

MS. GREENBERG: But I think before you would want to come up with that
document, you probably would want to have some hearings – a hearing.

DR. SUAREZ: Oh, yes, absolutely. I mean more than one.

MS. GREENBERG: Yeah, and that’s what I said. That document may not have done
a year from now. But on the other hand, to be useful we don’t want to have it
done too late.

DR. W. SCANLON: No, but I think – I mean, I relate to what Walter’s
saying, too, which is that I don’t know right now it’s too abstract for me. I
mean and frankly I think what we need is to have made some more progress where
we can identify what’s potentially an actionable item that we can recommend
because you know, we can talk about principles and talk about visions. But
ultimately it comes down to sort of what can be done to make this happen, and I
think that’s where we’ve got to go. And so when we get more concrete, I’m
thinking that sort of those rough drafts we see before the September meeting
hopefully are going to guide us or trigger the thinking on our part that leads
us to the next steps.

MS. GREENBERG: I mean at one point, we thought of like revisiting every
single recommendation and seeing, you know, whether they were still relevant,
whatever. That was, I think, didn’t seem the best way to go. So but at least
this committee and actually all the key informants, too, I had recommended they
get those goals and ten principles and whatever and just validate them. I think
the committee said, you know, there’s nothing bad here. You know, they agreed
with them and see what other people did as well. And so, you know, whether it’s
a new vision, an expanded vision, an implementation, who knows. I think there
are a lot of possibilities.

DR. W. SCANLON: Mark and then Bill.

DR. HORNBROOK: It seems to me that there’s potentially a long term or quasi
long term perspective here, and that is that this NCHS should be setting up the
country for evaluating comparative effectiveness dissemination and translation
as well as health reform so that we can see how our country is better off or

DR. GREEN: NCVHS, did you mean?


DR. LAND: That raises another question. I understand the healthcare reform
bill that’s been filed has a statistical entity in there for health reform. Is
that National Center, or is this a whole completely different entity?

DR. SONDIK: I don’t think it’s specified. I don’t think is the National
Center, or I don’t think it’s specified.

DR. HORNBROOK: The Kennedy bill, you’re talking about?

DR. BREEN: Yes, the 531-page bill, or 639 pages.

DR. HORNBROOK: I’m sure there are a lot of data requirements in there.

DR. LAND: It specifies there will be a statistical – that’s not the
exact words, but there will be a statistical unit that will be responsible for
whatever in relation to the healthcare bill.

DR. HORNBROOK: So what you want to show is to go from the productivity of
the U.S. economy, the productivity of our health investments so that our
relative health statistics rise faster relative to other countries, and our
relative expenditures don’t rise faster than the other countries. So we get a
better national perspective – international perspective. Then I think
there is a – and she’s probably going to shoot me down for this. But there
is a temporal phenomenon here which somebody, and it may be ASPE, could focus
on and that is that the effective loss of health insurance lags economic
recession because people maintain their habits for a while until they can’t
possibly afford them. Plus, they draw on their stock of health, and they draw
it down and then they really get sick, and then the bottom falls out. So one
would say as the proportion of uninsured and under insured goes down in the
next 12, 24, 48 months, however long it takes us to get national health reform
being effective, there is a chance now to show that the implicit cost of bad
coverage, the diversity, disparities, the lower health status, the
bankruptcies, the disruptions of families, the marriage break ups, the
divorces, you know, all the things that aren’t just a mortality disease but is
a social disease.

DR. HITCHCOCK: We really need very current data to do that, very current. I
mean it will be easy to look back at it in ten years.

DR. HORNBROOK: I know, ten years from now.

DR. HITCHCOCK: Yes, but –

DR. HORNBROOK: It’s a methodological challenge, I agree. But it is something
to put into your planning hat and think about.

DR. SONDIK: Well, actually this sort of all relates to what I was thinking
about in meeting with the former chairs. I was thinking of Lisa Iezzoni saying
the stars are aligning. So I mean that could be sort of a theme, you know. The
themes are HIT, health reform, Healthy People 2020, which actually has a very
nice framework and could be expanded a bit to be more healthcare as well as the
Healthy People side science. I mean this is going – if it continues, this
could be a hallmark of this Administration is really this emphasis on science
and social determinants. So I just thought about five things that probably
more, but it’s really quite a –

MS. GREENBERG: What was your fifth?

DR. SONDIK: HIT, health reform Healthy People 2020, science and social

DR. HITCHCOCK: Diversity.

DR. SONDIK: Well, I didn’t put in diversity. But you know, there’s any
number of things. But it’s as if there’s been a lot of emphasis on all these
things. And I mean I could see asking, you know, them, but I think it’s also a
charge to the committee as well. We’re now in a position to sort of chart a new

DR. MIDDLETON: The other thought is a lot of population folks are thinking
obviously about prediction and discovery.

DR. GREEN: Lisa’s talk was very impressive, I think, and I thought it was
just a huge indictment. Here you have measures that are – so if the
measures didn’t exist, if there were no classification function, if the World
Health Organization had never addressed this, if there was nothing sanctioned,
if we hadn’t known it for a dozen years and nothing had happened with it, it’s
one thing.

But when you know all of this, then I just kept sitting there saying why
hasn’t this happened. Why hasn’t this happened? And you know, the easy answer
is, well, no one pays for it. I think that’s a little too fast. There’s other
things probably at play here about why things like this don’t happen. I wish we
understood them better.

DR. W. SCANLON: Well, it’s part – I mean, per se we’d pay for this
whole thing with new profits. So we don’t give social determinants the shorter
shift, let’s turn to Dale.

Agenda Item: Social Determinants of Health

DR. HITCHCOCK: I’ve heard the phrase a lot today. We were talking about it a
lot. Before I start in to social determinants, I’m going to be very quick about
all of this. But there’s three sort of announcements that I wanted to make. One
was remember we had our hearing on modeling. We had the modelers come in and
talk about the various use of their models. And we said we were going to have a
contractor develop reports on that section, and we actually did. We’ve got a
first paper which basically just looks almost like a catalogue. There’s very
brief description of each of the models that we’ve heard about and a couple
that we didn’t. That one I can make available to you, and I will send it to
you, Marjorie, and you can distribute it to the committee.


DR. HITCHCOCK: The second one, which was to look in more depth at these
various models and to sort of examine their purposes, strengths and weaknesses,
what data they ran on, how often the data were updated and that sort of thing,
we’re still working with a contractor on that. We don’t have that ready yet. So
that’s one item.

The second item is some of you may have read about this or have been
involved in it. The chief information officer at the White House wanted to
develop a website called data.gov. Now data.gov is up and running. HHS was
originally asked to contribute raw data sets essentially so a user could
download onto their own drive or something to take away with them. We really
don’t have much like that, but we do have a number of excellent data mining
tools that are associated with our various collection systems. And we ended up
with IGAD from NCHS is on there. We started to just get online there, and we
produced tables, I guess, from rates from the vital statistics data that NCHS
has made available, public use online. SEER – we’ve got SEER up and
running on data.gov and I think at least two others we’ve got from CDC. One is
the CDC Wonder System that’s been around for a long time. Hopefully, we’ll get
some more recognition for being part of this effort.

Then we also have Whisker. I’m not sure what Whisker actually stands for,
but it’s an injury sort of surveillance system that CDC also maintains, and
that’s part of data.gov. I understand that the various agencies are getting a
lot of calls about the websites that they put up contacts or have listed.

The third thing, very briefly. We just started a discussion today with Jane
Sisk here at NCHS and the Division of Healthcare. ASPE wants to work with Jane
in hosting a workshop at some point this summer where we’re going to be looking
at administrative data needs for healthcare reform, and these are needs –
what do you need to know to implement a health – yes, what about the
people in Massachusetts? What did they find out? What did they find out they
need they have should have gone before, what do they need, what will they need
to be collecting now, or how are they monitoring the healthcare reform effort
in Massachusetts. So people involved in those sorts of efforts will be part of
this workshop. And as I said, it’s just – we haven’t even had our first
meeting on it yet. It’s just very much it’s just an idea that we’re trying to

So if I could move on to some of the determinants of health, you’ve got this
draft. I didn’t realize this was going to be circulated. It has my name on it,
and it has the date of 5/21/2009, my dad’s birthday. But this was – and
Nancy will agree to this. I’ve been involved a little bit with Healthy People
2020, and I’m on a data group and this data group is involved with both feds
and non-feds. Lisa Iezzoni is part of it. Rob Mandershy, as many of you
probably know, is working as a contractor, heads this group. Richard Klein here
at NCHS, Amy Bernstein at NCHS. We’re looking at sources of data for Healthy
People 2020 with the idea of making recommendations to the Secretary on what
might be done to improve data for Healthy People 2020.

And when we got out of a conversation about social determinants, I was asked
to sort of write something up or discuss it, and I did that. And sort of a
summary of what I was talking about is on this sheet. And the committee liked
it so well, they said let’s make this part of our recommendations. That’s why
it says here at the bottom of the sheet that the HHS Secretary should charge
NCVHS with holding a series of meetings to learn more about sources of data and
linking possibilities, analytical methods that you could use on bringing in
data probably from other sources. The Department of Transportation, the
American Community Survey, the Census, new sources of data that we could use to
sort of better understand some of the determinants health and the impact that
they have

There’s been a lot of discussion lately about if you really want to reduce
disparities in health, the medical model, better do it alone essentially.
You’re going to have to look at the context from where the people come. And I
was reading some literature on that. I came across this one short article from
Journal of Health Affairs, I believe it is, by Gill Lisky and David Satcher
– David Satcher is someone I really admire. I think he’s a pretty good for
– yeah, it is interesting in every sense of the word here. And this
article focuses on children, but I think it sort of touches on the importance
of social determinants.

And then I was going through it, and I didn’t mean to – I marked up a
couple sentences here, and let me just read these. These are – without
putting in really any context. So this is on the second page, and it says,
“The poorest males in Glasgow, Scotland have a life expectancy of 54 years
where high income males in that same city can expect to live to 82 years. And
the killer is this occurs in a country where nearly all have equal access to
the national health service.

DR. HORNBROOK: They don’t.

DR. HITCHCOCK: Well, in theory.

DR. HORNBROOK: In theory, but you talk to the GPs, you know there’s a lot of


Dr. Hitchcock: Yes, that’s exactly it.

MS. GREENBERG: That’s at the heart of the 21st Century Vision
statistics. That’s that influences on Hamilton.

DR. HORNBROOK: England is more socially stratified than even we are.

DR. HITCHCOCK: So there are a lot of possibilities here, and I wanted to
just bring it and put it on the table and see if the committee wants to pursue
this. I mean, Rashida, Dorsey and I and Lisa Baffoon who is an intern who was
with us for a while here and gone now could work on putting something together
over the summer so that an initial agenda item may be even for September break
out session that would look at the outline of plan.

MS. GREENBERG: Is Lisa here?

DR. BAREFIELD: No, I’m Amanda.

MS. GREENBERG: Oh, you’re Amanda. Excuse me.

DR. HITCHCOCK: We put a plan to put the other four – we’re having
meetings that we could have on this. It would be much like the format that we
used in our sessions on modeling and then health reform data needs where we
would bring in both people who produce the data and then probably researchers
that need the data. But we would be bringing in folks from the outside. We
would talk to people who were working in these areas now as the social
determinants, find out what their data sources and try to see if there are gaps
and see if there are ways that we could fill in the gaps.

Again, using GU or current analytical techniques and looking techniques.
There’s a lot that can be done. The HIS and the NHANES survey both geo code all
of their interview sites. And within a controlled environment, once you have a
GIS code, you can do a heck of a lot of matching. There’s some of the work goes
on in NCHS now. We’ve got Jennifer Parker who works with Bill Heimer who’s
doing a lot with climates and health. But there’s a lot that we – whether
we rely on this at all.

DR. W. SCANLON: I think conceptually this is an incredibly important topic.
I mean ultimately when we collect the data, we want to be able to look at these
kind of things. I’ve been a long advocate of how can we link in some of the
environmental data into some of the surveys. But we all agree that we’re up
against the issue of identification, but put that aside for the moment.

I think the issue for the subcommittee at the moment is so many competing
demands and the fact that we spent sort of an hour and a half before we got to
this topic.

MS. GREENBERG: You were circling around it.

DR. W. SCANLON: We were circling around it, and it’s certainly a part. And
my question is whether the part you’re talking about that’s modeled after the
health reforms pair of hearings, whether that’s an initial piece or something
that you want to do kind of after some other preliminary work.

And so I think – think about it, but I would say don’t make a huge
investment at this point because I think with what Dan and Gib are going to be
providing us, what we’re going to be trying to do sort of internally as a
subcommittee with respect to think about some of the new opportunities that IT
present that we’ve got a lot that we’re going to be choosing from, and we’ve
got to think about how do we sequence those given the resources we’ve got. If
this was sort type of full time job, we would be in great shape.

DR. HITCHCOCK: This is exactly what I wanted to hear. I mean, we need your
input on this, and I want to hear what Don thinks of it, too, at some point. I
would like to see methods like geospatial coding considered a part of the
overall HIT.

DR. W. SCANLON: Of course.

DR. HITCHCOCK: But it seems to me that you’re talking about the health of
kids which make it a high priority, you need to understand how the parents’
health benefits work. Can they stay home and take care of the kids when their
kids are sick, or do they have to farm the kids out and send them to school
sick or send them to somebody else’s house sick. And then the other thing is
there’s some paradoxes. I mean, my wife and I were sitting in a small
café on the Oregon coast, and my wife just happened to strike up a
conversation with a lady sitting next to us. It turns out she was a middle
school teacher, and they have a school district that was one of the smallest
school districts in Oregon. My wife is a school teacher in Beaverton School
District which is the second largest school district in Oregon. My wife has
class sizes of 25-30. Her class size in Molalla is 18. She was extremely happy
and satisfied because she made a difference for every single one of her kids.
Do they have any money? No. But she has the human contact with each of her kids
to save them from the lack of resources because she’s being the most valuable
resource. And so there’s a paradox in there that we miss in our traditional
education measurements in people’s spending.

DR. LAND: It’s a lot more than just medicine.

DR. W. SCANLON: We’re past our time. Does anybody want to have the last

MS. GREENBERG: Does anyone else want the ride to the restroom?

DR. W. SCANLON: Good last word. Thank you all very much.

[Whereupon, at 5:32 p.m., the meeting adjourned.]