[This Transcript is Unedited]

THE DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

SUBCOMMITTEE ON POPULATIONS

February 20, 2008

Hilton Garden Inn Hotel
815 14th Street, NW
Washington, D.C.

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

Table of Contents

P R O C E E D I N G S 3:25 p.m.

DR. STEINWACH: Welcome to the Populations Subcommittee. I
am Don Steinwachs at Johns Hopkins University and a member of the Committee. I
thought we might go around and introduce ourselves.

(Introductions around the room.)

DR. DOENNING: I am Doug Boenning. I am a medical officer in the Office of
Science and Data Policy at ASPE.

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

DR. GREEN: Larry Green, member of the Committee.

DR. SCANLON: Bill Scanlon, member of the Committee.

MR. QUINN: Matt Quinn, I recently joined AHRQ in the Healthcare IT group. I
work for John White.

MS. FARQUHAR: Marybeth Farquhar, senior advisor to AHRQ.

MS. GREENBERG: I was going to say I am Marjorie Greenberg and I work for
Debbie Jackson.

(Laughter.)

MS. JONES: Deborah Jones with the National Center for Health Statistics,
CDC.

DR. STEINWACHS: Welcome everyone and particularly, the new members. We have
an agenda for the next hour and a half roughly, or a little bit less than that.
Let me just ask if you would take a moment to look at it and see if there is
anything missing that ought to be there because we have one chance to fiddle
things or speed try and speed things up if that is appropriate.

Let us turn to the medical home and I really want to express my thanks to
Matt Quinn for agreeing to help provide the support and help us move ahead on
this with AHRQ. Marybeth also has been a great help and she found Matt.
(Laughter.) Mary Beth said, I would love to help you and I would even be
greater help if I found someone else to help you too.

We have had two or three conference calls trying to begin to move this
ahead. Part of this has involved Larry, in educating the rest of us more about
the medical home. I thought maybe, Larry, you could say some things –
there is an overview here that is part of this – about the overview and
then we could have some discussion about the next steps.

Let me just say that we have set aside May 19th and May 20th to
have hearings on the Medical Home, and this proceeds the NCVHS next meeting. I
missed the last call. I think Matt and Mary Beth worked on trying to begin to
generate names and identify who would be candidates for being there and maybe
there are some things to say about that but we need to keep that ball rolling
really quickly so that we can make invitations.

Larry, why don’t you start off?

Agenda Item: Plans for Medical Home Hearings

DR. GREEN: My objective is to get to Matt very quickly. There are two points
that I would make that I think would help us look through the material that
Matt has organized for us here. The first one is the Medical Home is a concept.
That concept can be shorthanded as being modernized primary care in the IT
world. There are efforts that are designed or aspire in some way to do two
things. One is definitional and the other one is functional. The definitional
one is what is a Medical Home? There is a lot of activity around that –
that has to do with certification or designating that this is a Medical Home.

Then there is the second set of issues which are measuring the performance
of this thing that is called a Medical Home. Does it really integrate care?
Does it do what it is suppose to? Both are those are data driven propositions
that are active and are in play right now. This could be an important
development in NCVHS’ interest in the development of a National Health
Information Network. It could be a port of integration for most people in the
country.

That is why it is important and that is a very brief overview of sort of
where it is and how it fits into our purview becomes it comes down to
measurement in data necessary to do measurements. I lied – I said I wanted
to make those two points. The third point is we might also do well to look at
the National Center for Health Statistics data sets and the surveys that are
operating like we just heard Jim told us that MEPS is funded in the current
budget near $55 million. There very well may be measures – questions –
something or the other, that needs to go into a MEPS in order to determine who
has a medical home and who doesn’t. Whether or not their medical home helps or
not? Whether it saves money or spends money – cost more, cost less –
leads to more functional outcomes/less functional outcomes. And that we might
be able to take advantage of these large national datasets if we just got our
act together and thought it through.

To get this from that level of discourse, Mary Beth has found Matt and now
he is hard at work.

DR. STEINWACHS: And productive. He just doesn’t talk about it he is
productive. Matt, do you want to just take us through the overview and that
will give us a chance for some general discussion

MR. QUINN: I think something that is really important about the medical
home concept is that it has been kicked around by various societies and
specialty organizations since the late sixties. It seems like each decade or so
there is something added to it.

The most recent decade, especially with the advent of a lot of the
technology that we are talking about today, it seems to have become more a
reality than a bunch of charts and sheets.

There is broad consensus that this is a good idea, especially among AAP,
AEFP, ACP, AOA, et cetera. Also a lot of business organizations and NCQA. I
think the real question is how do we get from a lot of people shaking their
heads – this is a good idea – how do we actually do it. All of these
organizations came together I think last year or a couple of years ago, and
agreed on a whole bunch of this joint principles which are bulleted here.

There is a lot of land to cover here but the key things though are this is
a patient centered approach. It is founded on the importance of primary care
and it looks at more than just piece work. It looks at coordination and
management activities that are not currently compensated or properly
compensated they would argue today. This is quality and safety are the
hallmarks of this and that there needs to be a health IT infrastructure for it.

There are a lot of groups, like I said, that are working on this. There is
one called Patient-Centered Primary Care Collaborative which is a bunch of
employer groups – not the least of which is IBM, that is saying this is a
really good idea and let us figure out how to do this.

Something that I think is really significant and can flavor our testimony
of this, is that CMS is mandated to do a demonstration of a Medicare Medical
Home project starting in – they say it starts September 2008 – the
actual patients in it in January 2009. They are actually in the process of
getting it off of the ground right now. They have awarded a contract to
Mathematica.

MS. GREENBERG: Who is that?

MR. QUINN: CMS.

DR. GREEN: How big is that demonstration going to be?

MR. QUINN: To be determined. Something that was very good – we sent
this around after the last meeting. DeLoitte did a study on the medical home
demonstration. I want to say it was limited to eight states. There was some
information about that in here. Medicare Medical Home Demonstration Tax Relief
and Healthcare Act of 2006 talks about a period of three years – will
include urban, rural, and underserved areas in no more than eight states and it
provides some of the payment stuff.

That said, I am excited to be part of this because it sort of – a lot
of people are already doing really good work on this and I think it is the role
of AHRQ and our testimony here, to bring together and convene all of these
excited and interested parties to come up with some of the additional questions
that need to be answered but also set in place some of the specific data
centric work that has to happen here.

We came up with four goals for our testimony for May 19th and
20th. One of them is just convening organizations from the public
and private sectors to come up with a shared understanding, consensus on
definitions, and understand what the data standards, measures, models and flows
are today.

The next is really around understanding the adequacy of those, especially
as it relates to measures and metrics. There is really three sets of measures
as they relate to this. One of them is the existence of the medical home. NCQA
for example, has a program called EPCPCMA, which standards for something
primary care patient centered medical home that assesses the medical homeness
of the primary care organization. Is that adequate? I don’t know.

Then there are a whole set of measures around measuring the process
measures of performance of the medical home and what categories those fall
into. And then measuring the impact of the medical home on sort of the bigger
outcome measures and whether that can be done. The goal is really to understand
the adequacy of current measures in that area.

The next goal, number three, is really around the applicability, use and
limitations of current data sets. Looking at MEPS, we discussed last meeting a
childhood – I should remember the name of it – there was a specific
– when I started talking to people at AHRQ about this they said, oh, this
is already being used today for this. It is children with special need data
sets. I thought it was pretty interesting especially since this was started for
children with special needs.

Not having to reinvent the wheel. Not having to require a whole bunch of
extra data collection efforts if possible, to accomplish this. And then since
health IT is necessary for a patient centered medical home understanding –
we just heard about a lot of certification effort – how do the data
standards – longitudinal data requirements and measures – how are
these being incorporated into the systems and certification efforts of today?

Dr. Loonsk was talking about a choice between medical home and another
thing is a priority and I whispered to Marybeth, I vote for the former as a
priority.

We are looking at probably a day and a half. You can see that I have
sketched out a rough agenda of what we might cover here. It is certainly up for
reorganization, better definition, et cetera. The goal of this is really to
summarize the findings of the meeting, identify gaps, develop a set of written
recommendations for consideration by the full committee to inform the Secretary
on this.

The feedback that I have gotten is that if this is – if we stick to
this scope and this focus, and we include people that are already doing a lot
pieces of this that this would be favorably received and would be helpful. I
hope everyone else has been getting the same feedback as they discuss this.

Do we want to talk about the agenda?

DR. STEINWACHS: Why don’t we do this? Why don’t we open it up and see if
there are comments because so far there has been some subcommittee discussion
but a lot of us have been going on without the full subcommittee being
involved. This gives you sort of a framework and a set of objectives, and if
there are suggestions for how we could strengthen it or any concerns, now would
be a great time.

So how many people have a medical home? (Laughter.) Oh, I think there may
be an unmet need here. I don’t know.

I did the other day have a meeting with one of the vice presidents of NCQA
and I did mention to her that we expected to have some hearings and so on. It
got into the discussion of how do you know whether or not the patient and the
physician both agree that they are providing a medical home? Most of the things
that are done right now are collected from one perspective but not the other.
It always seemed to me the nice thing about NCHS was that there were ways in
which, like with MEPS and HIS and so on, that you could begin to get two
perspectives. I got a medical home but it is not you. Larry says, of course I
am your medical home.

We are going to have some more conference calls to try and flush in this
agenda. We are going to make them so that everyone will know when the calls and
I will look for you to participate. We really need to try and pin down the
agenda in the next two to three weeks because if not, we are going to have a
hard time getting people in May. Look forward to your participation. If you
have suggestions or other things, either get them to Matt, Larry, me – I’d love
to keep this moving ahead.

I think it ties very nicely as you think about part of what people are
talking about as health reform in the US that might start in 2009. This really
talks about what is our capacity within the health statistics system as well as
commonality of definition, but what is our capacity to actually measure
something.

Doug.

DR. BOENNING: I have a comment and a question. The definition of a medical
home may change over the lifespan. What we need as a child might be very
different than what you need as a geriatric patient. I would hope that that
would be one of the perspectives of the workshop.

My question is the demonstration project that Medicare is planning. Are
they going to have any pediatric medical homes or will they all be the typical
Medicare patient?

MR. QUINN: Mathematica has been awarded the contract and Miles Maxfield is
the person there who is working with Jim Cohn from CMS on that. I have
contacted Miles, and with Jim’s approval, who I also contacted but not heard
back from, would be happy to participate and is open for this. Right now there
are at the stage of coming up with a model for this – really. When I said,
well, what if we were to discuss data standards, and measures, and other
things, is that something that you have figured out or is that something that
you would like to have multiple perspectives on? He said, by the end of the
summer we have got to roll that out so, yes, absolutely.

I think that that would be a really important constituency to have involved
since this is where the rubber meets the road. He could also speak – I’ve
invited him with Jim, to speak to us about it if we have any questions. He
said, well, before I move ahead my project officer better — I have a little
blurb for it in the Deloitte Report if you want to check it out.

DR. SCANLON: My sense would be that they would have a hard time using
Medicare Trust Funds for kids. This is probably going to be sort of a target on
the elderly.

DR. STEINWACHS: You would have to go to Medicaid.

DR. SCANLON: Right. Quicker timeframe – one thing if I remember right,
it is like next month that Mathmatica will be reporting to the CMS with a lot
of design issues because in order to have this thing out – participants in
the summer time – they have got to know now what it is they are thinking
about doing. Things are going to move fast if they are going to try and meet
the deadline.

DR. GREEN: Do you have a sense that there will be – I think I know the
answer to this but let me just confirm it. I think that what you just said is
that there good chance that Mathematica will have the design specifications in
mind for that roll out pretty well refined by May, when this hearing will
occur?

MR. QUINN: I think so, yes. In fact, they may have it pretty well refined
today. At least I am sure they are in sort of the process of discussion and
then refining them.

DR. GREEN: That could be exempt?

MR. QUINN: Right. There may be a sensitivity on the part of CMS which is,
to the extent that Mathematica is the CMS contractor reporting to CMS and in
some respects contributing to CMS’s deliberations and CMS hasn’t resolved what
they want to be public with in terms of solicitation there are not necessarily
want to talk about things in May. That is the one hang up. It will depend very
much on where CMS is at that point.

DR. STEINWACHS: Good advice.

MR. QUINN: The other thing is – the question is – a lot of the
discussions that I have heard about the medical home suggests that it is a home
that we haven’t seen yet or at least that is what people want it to be. They
want it to be more than what necessarily has been –

DR. STEINWACHS: Do they want it more than Dr. Marcus Welby?

MR. QUINN: You did not see a computer on Dr. Marcus Welby’s desk – did you?

DR. STEINWACHS: No, come to think of it, I did not.

MR. QUINN: At least in some circles that is actually the critical component
that if you don’t have a computer it is going to be a question of how can you
sort of do the coordination follow up consistently, et cetera, that you want in
this type of a medical home.

So there is this question of looking towards data sets to assess things
that is going to be very futuristic in terms of when we get actual results
because we are not going to find many homes out there at this point in time.
The measures that we want, if we started to field those questions immediately,
are hardly none response. It would be non-response because nobody knows. I
think we need to think of a strategy in terms of building up for the
information that we would like to have but then think about sort of what is the
appropriate way in terms of rolling it out.

DR. STEINWACHS: One of the things that NCQA has their physician practice
connections with their assessment tool – essentially they are certifying
now medical homes.

MR. QUINN: It is not so much – you get a score and there are certain
characteristics of medical homeness that are necessary, you have to have a
score of at least 5 out of 10 on it. While I think that it is encouraging to
say okay, this organization or practice has some degree of medical homeness
– it almost dilutes the whole idea that it either is a home or it isn’t a
home or it is sort of half way in between. Oh, we don’t really have registry
functions but we do have an EMR. Oh, okay you get five points. I think that
that is an issue and especially as it relates to consumers – purchasers,
saying, okay we want to do business with this sort of an organization or choose
a higher score. But at some point it either is or it isn’t.

PARTICIPANT: Basically NCQA is doing structural measures of medical homes
and not necessarily their care —

DR. STEINWACHS: I thought those comments sort of said, well, there are some
measures right now. And just the point you made Matt, you should put some
threshold in there but that really doesn’t talk to the measures that we may
need in the future.

MR. QUINN: The other aspect that I recognize too, is there have to be
patient centered measures existence as well as provider centered points. I
don’t know if that is being captured today by NCQA.

DR. STEINWACHS: Marybeth looked at me – so I always advocate for that
patient –

MS. FARQUHAR: I was trying to think – I think NCQA does some things about
that – patient centered – and have some particular –

DR. STEINWACHS: – but it hasn’t been part of a certification.

MR. QUINN: That was the other – we have a group inside of AHRQ that
would be a helpful resource.

DR. STEINWACHS: Why don’t we move on. Carol and Justine, we were just going
over the medical home and onto the next topic. Do you have an agenda.

(Carol McCall and Justine Carr join subcommittee)

DR. STEINWACHS: Bill, I know that Kevin ditched you but Doug came with you.
As I think, the subcommittee knows that we had hearings roughly a year ago
– in the middle of a snow storm –

MS. GREENBERG: I can report it is snowing.

DR. STEINWACHS: This is the annual event for surge preparedness – this
is really bad weather preparedness group. There has been some work and
beginning to think what a letter might be that would communicate useful
findings from that hearing. There were also follow on interviews and so on.

Bill, do you want to summarize where we are?

Agenda Item: Discussion of Draft Letter
Surge/Preparedness

DR. SCANLON: Sure and then we can say we assigned the letter to Kevin. It
actually was 53 weeks ago but who is counting.

We had a hearing on surge capacity and subsequently sort of Doug and Kevin
and I, have had a number of phone calls and Doug and Kevin have done some
interviews sort of follow ups on this. Part of this effort was derailed in June
by the Data Uses Work.

DR. STEINWACHS: Justine takes full credit.

DR. SCANLON: It is okay. It is part of the report. Now that we have
recovered from the Data Uses work we now have confronted this issue of what can
we do, what should we do, with the results of the hearings?

We actually, instead of having a letter, we have drafted two letters. One
is sort of an excellent draft that was put together by Doug, that really
captured the richness of the hearing. I can’t remember the number but it was
maybe like 12 or more witnesses at this hearing from really a lot of different
perspectives. There was not very much overlap in terms of what any of them were
saying. The observations that you get out of the hearing are many. There is no
question about that. That is one version.

Kevin sort of tried a different version which sort of tried to focus on
what you might think of the highest level recommendations that might sort of
possibly come out of this.

We have also sort of had discussions about the issue this letter of to be
or not to be. To be or not to be for sort of two reasons. One is that when all
is said and done we had four hours of testimony and some conversation. The
question we talked about this morning about evidence, is the issue –

DR. STEINWACHS: I didn’t think we let the evidence get in our way –
did we? Marjorie is looking very crossly at me.

DR. SCANLON: In sort of complicated by the fact that the hearing was rich
in terms of multiple perspectives but not necessarily on the same thing and so
therefore cooperation among witnesses was not necessarily a strength of the
hearing – it was more strength as in terms of opening up a whole lot of
doors and pointing us in a direction but necessarily leading you to endpoint of
all of those directions.

There is that issue of sort of the original plan was the follow up to
develop the evidence that would then reach conclusions with a lot confidence
and then see whether there are things to make recommendations about.

The second factor in this deliberation is that the world has changed in the
last 53 weeks. As Jim Scanlon said this afternoon, ASPE is out there – as
one example – ASPE is out there redoing their ED survey of preparedness
and it is not the same survey that existed a year ago. It is a survey with new
components and so there is the issue of some issues that have come up in the
hearing have been partially addressed.

The other thing is that within the Department there has I guess you might
think of it as a somewhat of a reorganization or an elevation that we now have
ASPR, Assistant Secretary for Preparedness and Response, who has about 500
people – as I understand this.

They are also engaged in this issue of what information do we need for
preparedness? There is a question of sort of what they are doing would answer
some of the issues that we might raise on the basis of the hearings.

Where I think we are now is – if Kevin were here we would have a
fuller discussion – we are planning a fuller discussion between Doug,
Kevin, and myself, in terms of what we think about how best to proceed forward.
Besides sort the traditional letter to the Secretary with recommendations, I
think one of the things that I would put on the table is potentially a
non-traditional letter to perhaps ASPR, saying we had a hearing – kind of
reminding them – we had this hearing. There were a number of interesting
themes that were introduced and we think that being aware of them is something
that would be helpful as you move forward.

You might think of those as suggestions as opposed to recommendations. I
think we should reserve recommendations for things that we really think are
important, we really think we have the evidence for because if there is too
much noise from the background then people start to lose the message. They
don’t hear what the message is. Everything should not turn into a
recommendation. They either should not be reported at all because there is a
learning process which sometimes you have to engage in things that don’t
produce momentous events or there are things that need to be sort of spoken
quietly so that people understand that when you are shouting – pay
attention to us.

That is kind of where we are on this. We will be talking about it some
more. We do have these two drafts that we can work from. One idea is to sort of
meld the two in the sense of take the high level view in a letter and capture
the richness of the hearing – sort of an appendix document that says that
all these things were raised. We are not saying that everyone of them is
totally sort of valid and of major concern at this point but there are things
that are worth thinking about.

MS. FARQUHAR: Now that you mentioned that – I’ve been trying to avoid
this like the plaque. ASPR has contacted my project to do some of that work. So
there is a connection there with regard to it. Just know that that is
happening.

MS. GREENBERG: Which is your project?

MS. FARQUHAR: Quality indicators – So if you have got recommendations,
absolutely, let’s move with them.

MR. SCANLON: The issue is that the recommendations are not so specific they
would be more of an area they would be prone to – this being kind of one
of them. I think we can talk about that.

MS. FARQUHAR: So basically they just started them. They just did their kick
off meeting in the last week or so.

DR. STEINWACHS: So, Marjorie, just in terms of procedures – the desire
to transmit information not recommendations to –

` MS. GREENBERG: First of all, I am very comfortable with that. I think the
Committee has done it on occasion. I also agree with you that it is like in
research, sometimes you have false/positives. You have to maybe hold a hearing
to know that you don’t have anything to say about a subject or that you would
have to do so much more work that it is not appropriate or you don’t have the
resources or somebody else is doing it. That is not the end of the world.

On the other hand, I actually attended that hearing and I learned a lot. I
didn’t know much about the topic but I thought it was very interesting. There
were a lot of really sharp people – it wasn’t a random sample or a
systematic sample or anything like that. It certainly was well informed people
it seemed, from different perspectives who brought forward a number of
interesting issues, et cetera.

I think if you have already done some work on synthesizing this I would
encourage you not to just put it in the file cabinet, and possibly as you
suggested, not a letter to the Secretary. And we have done that we have done
letters to NCHS Director, AHRQ Director, which have tended to be probably more
informational or less directive.

DR. SCANLON: I think among the options that you have listed as what can
happen when you open a topic – it is not one where you say this is not
worth pursuing. What actually came out of the hearing was the fact that there
was just so many things that were worth pursuing – and the other
significant thing is that somebody is pursuing it. That is probably the
critical thing. The Department is already engaged and if there was a role for
an Advisory Committee at this point in time, it might be to look at what the
Department is currently doing and ask themselves —

PARTICIPANT: You can offer that?

DR. SCANLON Well, but that puts us into and I think this is sort of a
bigger discussion we need to have in the Full Committee, which is where would
this fit into our agenda? The Executive Committee meeting a couple of weeks ago
– this whole issue of – there is potentially a very full agenda that
the Full Committee can have and we need to think about where this might fit. I
think given ASPR’s numbers it might suggest like them do some of this for while
rather than start to look over their shoulder immediately.

MS. GREENBERG: Do they have an advisory committee?

DR. STEINWACHS: Marybeth?

MS. FARQUHQAR: No.

DR. BOENNING: As Bill alluded to this started as an office, OPHE, Office of
Public Health and Emergency Preparedness, and it grew by an order of magnitude
probably in 18 months. When we held the workshop they were just hitting the
ground running.

MS. GREENBERG: Did we have anyone there from that office?

DR. BOENNING: Yes we did and I believe is still there. He had just started
as an academic on loan.

MS. GREENBERG: I think, as Larry said this morning, this committee is about
data and data information, and hopefully have got influence in policy. I would
say a pretty high priority for this country is preparedness one way or the
other. So, although admittedly you don’t want to volunteer for everything and
anything, I think if you were to do such a letter to provide feedback on the
investigation that you have done to say that if you would like to continue the
dialogue with us or whatever. Sometimes offices like that could really benefit
from somebody a hearing – I can’t think of another advisory committee in
the Department that would be particularly appropriate. AHIC is going into
another format. We can offer that and they can take it or leave it.

DR. CARR: Again, just following up on this morning, as we think about these
topics and some of which are so vast – many hoops involved – getting
back to what Larry was saying this morning, is there a way to take that what
you heard at the hearing and put it into here is the data, here is the kind of
information that you will need to be able to understand or follow. Is there a
way we can take a big topic like that and bring it down to what NCVHS charter
says we should be doing in advising on data information?

DR. SCANLON: I think there is but again, there is still this issue of
whether or not that is the focus of there’s too. One of the things that has
come up in terms of preparedness repeatedly, is the whole issue of having the
information to both manage preparedness in advance – knowing what the
distribution of resources is and then sort of trying to do something to address
that. Secondly, to have real time information. This is very different than some
of the things we think about because when they talk about real time they are
talking about days, if not hours, as opposed to we are going to do a survey.
NCVHS is proud now because Health Interview Survey comes out within 18 months
of the first interview – which is an incredible feat. But if you talk to
the people who were in HHS during Katrina, they were talking about updates on a
daily basis, if not shorter.

I think this is something that if we talk to ASPR, they are probably doing
some of it. Not that I am saying we shouldn’t put it on our list but I think
our list is also going to be long, too.

DR. STEINWACHS: Sounds good. We have next steps.

DR. SCANLON: We will have next steps and the three of us will have a
conference call and we will schedule a conference call for the full
subcommittee.

DR. CARR: It might be good to have Marybeth’s input on what the piece that
she is about to embark on.

DR. BOENNING: Marybeth, can you just say in two sentences what the request
from ASPR was to AHRQ?

MS. FARQUHAR: I’m not the lead on this my colleague is – there are
only two of us in my program and I am one of them. What I understand is they
have given us – it is a two-year project for $3 million or something to
that affect. It is basically to develop measures of emergency preparedness with
input from ASPR and us developing it and testing it. We will go through our
contractor, Battelle Institute and Stanford and UC-Davis – they are the
ones actually in there developing the actual measures. After that I hope I have
got it in their heads that they need to have some testing done but we will see.

MS. GREENBERG: Just want to say since Kevin’s terms will end in June
1st – actually I think, Kevin had to give a seminar today to
Homeland Security so at least he is working on behalf of this topic even if it
is not in this room. I know this is a topic he is knowledgeable about and very
interested in so it would be really good if we could have something for the May
meeting, when he is still a member, assuming he will still be a member then. So
I think some conference calls and e mail and all that between now then would
work well.

MS. JACKSON: We have got at this point, the two items – the medical
home hearing that you are indicating you want to open up for the populations as
well as the surge. The work has been done in these pockets – two or three
over here and two or three and there – but at this point it is time to set
up the information to full Population Subcommittee. So as you are working in
pockets you are going to accommodate that and work off line and then when we
get into the Populations call itself, we probably would want to handle one or
two or however you want to do we will determine but now it will be just for the
full Populations Committee.

DR. STEINWACHS: I thought on the medical home that we ought to be opening
that up as we talk about who ought to be on the schedule and this is joint with
the Quality Workgroup so that everyone has the chance to participate in that
– trying to populate. So we are probably at that point to try and keep
that open and moving.

I thought on the surge, once you have sort of more proposal I guess, for
discussion by the subcommittee in terms of whether that is a letter or maybe
not doing a letter but that would be a great time then to have call that
involved everyone to get reaction and next steps.

MS. JACKSON: It is going to be a busy spring. Thanks.

DR. STEINWACHS: Spring, it is new life. I don’t do anything in the winter.
Let us move on to the next item which is Board of Scientific Counselors update.
Bill, looks like you have a staring role.

Virginia, I don’t know if you also have things you want to say about that.

DR. CAIN: Why don’t you go ahead. Jim was not able to be here?

DR. STEINWACHS: Jim was here earlier today but did he leave?

DR. SCANLON: Jim had to leave. One of the earlier versions of the agenda
had BSC sort of for tomorrow. Jim is teaching a class at the University of
Maryland right now so he had to leave at about 2:00 o’clock.

Agenda Item: Board of Scientific Counselors
Update

DR. SCANLON: In terms of – he and I had a discussion so this is
some of what he might have said if he was here. In terms of activities at the
BSC, one sort of interesting development is that the BSC has written a letter
to the Secretary about the NCHS budget. This was precipitated by a concern
about the vital statistics system.

When we had a join meeting a year ago September, there was discussion of
that and especially the difficulties it is having because of budget sort of as
it moved to electronic reporting – that process of moving to electronics
is being compromised by the budget and in the process we are actually losing
seemingly parts of – potentially losing parts of the vital statistics
already.

This kind of concern sort of BSC to write a letter to the Secretary saying
how important it was that NCHS – it was NCHS generally, being sort of
adequately funded. Jim’s numbers this morning, when he talked about the NCHS
increases in 2008 and proposed 2009 budget are not the result of the BSC
letter. (Laughter.) They can’t take credit for that.

MS. GREENBERG: No, but probably – I don’t know exactly the numbers he
said – it wasn’t that big of an increase for 2008 I don’t think. Those
increases probably could be absorbed by the Vital Statistics program and of
course, they were suppose to be for the entire Center.

DR. SCANLON: Jim, I think, was being sort of kind because at one point he
said, the proposed budget for 2009 is $125 million, which was regarded as sort
of the minimal funding a few years ago for NCHS and being an economist – I
would say their inflation. So, that $125 is

DR. STEINWACHS: Should probably be $135 –

DR. SCANLON: Something like that. So we are still talking about sort of
difficulties in terms of budget and resources.

Vital statistics is something that is a significant interest on the BSC
– it has been – Garland, is not here today, but in this committee. The
BSC, even though they are going through a process of reviewing each one of the
NCHS programs and the vital statistics was the first, they are going to come
back and look at some vital statistics again partly because of this issue of
how is the system affected by the availability of resources and what are the
results.

This seems like an area where there is some potential for some kind of
common work. We had a discussion of this at the Executive Subcommittee meeting
– the exact sort of method or mode was not resolved. There was one thing
that was discussed which is how does a committee get work done. This sort of
goes to Debbie’s comment about pockets. The answer was when one person is
interested in a topic on a committee, then that becomes a topic that moves
forward. The assumption here was that Garland will be a driving force if we
begin to take up this topic.

There is kind of a natural event, the IOM is going to meet on this in April
30th. Following that is kind of the logical time to say okay, here
is where we want to sort of proceed.

There is also significant interest in talking with Jim, and also prior
related conversations with the BSC, on this whole issue of the quality research
boundaries and consistencies sort of in terms of rules for gathering
information. I think this is actually critical for the Population Subcommittee
in terms of if we had cared about populations statistics and population health
that we do have sort of the right set of rules in place that on the one hand
sort of protect privacy – sort of protect individual interest but on the
other hand, do not serve as major barriers to the development of knowledge and
information.

We did the letter before on the issue of release of information but that is
after the information has been collected. There are also issues about the
collection of the information. We had a discussion about this also at the
Executive Subcommittee because there has been this recent event involving sort
of a emergency department checklist –

DR. STEINWACHS: ICU checklist.

DR. SCANLON: ICU checklist. Okay.

DR. STEINWACHS: State of Michigan and Johns Hopkins.

DR. SCANLON: So the issue is what are the rules that one needs to follow?
It essentially comes down to that kind of a question. Jim Scanlon indicated at
the Executive Subcommittee that the Department is probably going to be issuing
guidance on this at some point in the near future. So we said this is something
that after that guidance is out, we should be thinking again about the quality
research interface because this is a bigger issue than is probably going to be
dealt with by this guidance. It is a big issue for how we gather information to
either measure health or to improve sort of health by improving the system.
There is similar kind of interest on the BSC side as well.

DR. CARR: As we are going through the topics, and following up again on our
discussion this morning on how much of where our work comes from – the
research quality identified in the secondary uses of data report. Another thing
that crosses my mind is the data linkages report that came out of here that we
have not – I haven’t heard that as part of what we do but it seems like
that is a big topic.

Then, I actually, I wonder if in fact choosing the topics according to the
expertise on the committee is really the right alignment. Like surge capacity
was an interest of Kevin’s, who is going off the committee – is there
someone else or is it the work of the subcommittee? I just raise that as a
question as to whether we think of the ways – some of this is proactive
and some is reactive – where the topics come from, building on our
charter, building on work we have previously done.

DR. SCANLON: I don’t think we are going to lose the data linkages issue
because data issue is very much a part of this whole question of what do we do
with respect to data and privacy. The data linkages workshop, even though it
was conceived as demonstrating sort of what the potential of linking data sets
can be in terms of new kinds of information that one would have, the letter
turned out and actually a theme of the workshop, turned out to be some of the
risks in terms of linking data sets and then sort of how to best manage those
risk while trying to maintain the returns of the value of the linkages. In some
respects, there was no controversy about boy, you can get a lot out of linked
data sets. But the question was how to make that safe from a privacy and a
security perspective.

I think as we talk about this whole issue of research quality – that
maybe is not sort of the right way to characterize it the research qualities
– the boundaries. We only have that boundary because there is this
artificial thing called HIPAA, which set up one set of rules. Then we have
these set of rules for privacy. Both activities can be exactly the same and the
question is why isn’t there a single set of rules for them. After you ask that
question then you can ask the question of what would be the best of rules to
govern both sides of this.

That is kind of where we are. The second part of your question comes back
to humanness of the members of the committee, which is a topic that you are a,
not expert in, or B, sort of not sort of not passionate about (Laughter.)

MS. MCCALL: I would add though, while expertise and passion I think are
necessary to be on this committee. When you think about the fact of it being
that a particular person that is going off, I would just ask the question
– what is the policy issue that NCVHS is in a distinct position to help. I
think we are a scare resource,

Trading bounds portfolio is all about picking and picking well. Let us
assume that we are going to have people who are passionate and have expertise
– I don’t know enough yet about why that particular problem – what is
a problem that is unaddressed that is a policy issue that we can help with.

DR. STEINWACHS: Just in terms of approach, each of these, the surge
capacity had a customer in ASPE and had a post-Katrina context – so there was a
policy context. I think we tried to marry two things together. One is
individual interest – because we need to someone to help drive it and the
other is the customer concept that there needs to be someone in the department
or elsewhere – certainly the public more broadly, could be the customer
and we will be talking about the 21st Century Update and so on, as a
broader context but also as NCHS as a customer to it.

I agree with you that it is more than just the individual, but I think it
is tougher if there is no mandate. This committee does not, like privacy and
security or some of the others, essentially have agendas being driven from the
Department or from HIPAA and the Congress back down.

MS. GREENBERG: This subcommittee.

DR. STEINWACHS: This subcommittee. So we have the luxury in a sense, moving
it the other way and I think it is good to raise those questions about are we
picking the best priorities and moving them ahead.

DR. SCANLON: I guess I also think that we in some ways have an opportunity
within this subcommittee as being part of the full committee, because of those
mandates to the other components of the committee. I think some of the big
policy issues may be at a higher level in terms of HIPAA, in terms of research
rule, and the research rules are certainly a big component of that as the whole
privacy question.

Those in some respect, present an opportunity that cuts across all kinds of
very specific topics that we might be focused on because those kinds of higher
level things are going to influence the kind of information that is going to be
available for our specific topics.

This goes to the discussion this morning, what is the best way that we as a
committee can deal with these things? Is it that two subcommittees meet jointly
or is it that we create the ad hoc groups? That is where we have potentially
our biggest impact in terms of one thing having sort of multiple outcomes with
all kinds of applications as opposed to saying that is a topic I’m really
interested in and I would like to work on it.

We are not talking about building capital in terms of basic sort of
fundamentals that are going to influence data in all kinds of different ways.

DR. STEINWACHS: Just to follow up on the data linkages, the general sense
and sort of the agreement of the plan, was to about every two years, either in
late 2008 or early 2009, hold a follow up session to try and assess progress on
data linkages using the background on the two days before. There are areas
where certainly some of the challenges that were raised before, there is
progress being made on. I think others that were concerned may still be. It did
not bubble out of that a specific issue. We did talk about some of the legal
issues. I think the feeling was that this probably was not the group to get
deeply embroiled but it does cut across privacy and security. A lot of it is
legislative mandate, too, and inconsistencies and the demands that are put on
those groups – which are worth point out, but are also a little tougher to
crack.

It has been a good discussion.

DR. CARR: Continuing on with quality. Just thinking a lot about how do we
leverage the expertise that we have and align the agenda. We should talk about
qualities of workgroups. Is the work done or is it a broader topic and quality
is a part of a lot things.

DR. STEINWACHS: We think it is part of everything.

DR. CARR: There were other issues that came out of these as a data report;
stewardship was one of them – that was an interest that AHIC –

DR. STEINWACHS: And the data linkages comes back to some of the stewardship
issues, right?

DR. CARR: And the other was de-identified data. Again, I think we need to
know before we close the meeting today or tomorrow, to just know top down, from
Simon – we have a lot of things kind of floating around – at least
three coming out of the uses report – so that is what I am thinking in the
background that if somebody suddenly says, oh, this has to get done. How do we
organize ourselves? Who does it? If we have already embarked on other things,
where is the space to do it?

DR. STEINWACHS: I think Jim Scanlon, who is not here, was talking mainly at
the Executive Subcommittee meeting, about not taking on things that would
possibly be irrelevant once a new administration and a change of people comes
in. I think there is another piece of that evaluation strategy. A little bit of
it. You don’t want to wait and see but there was part of what Jim was saying to
us in part, take on things that you are certain and things that you can finish
up or are definitely going to have a persisting value to do so at this time.

DR. SCANLON: That might also suggest that things that are too specific are
things to avoid whereas things that may be contribute in a more general way,
that it is hard for any administration to say, wait a minute – that is not
relevant, are the things we ought to focus on.

DR. CARR: I think it would be valuable to get all these topics out. What
are they talking about over there? What does Standards and Security have? Where
does ICD-10 fit in – 11, 12 and 13?

There is just a lot of things that if we move them to say that here is a
theme and then bring into those groups kind of thinking about the ad hoc group,
what subcommittee are you on can you be a part of this? I just feel that we
would leverage the expertise better if we pulled groupings together.

DR. STEINWACHS: You did a beautiful job presenting both our history and
sort of where we are at. This is going to get another job for you and Harry,
right? I think part of it is trying to organize it in a framework because most
of us have a hard time because you think about it as a collection instead of
what you are trying to push, which I think is important.

DR. CARR: While going through that 2004 Quality Workgroup Report, which was
huge when we saw it. I think everybody was – let’s not look at this for a
while because it was so huge.

DR. STEINWACHS: But it had a lot of good stuff in it.

DR. CARR: And actually we found a lot of stuff that has happened and I
think it is a great opportunity to see how the landscape changed it.

Agenda Item: Plans for Update of Health Statistics in
the 21st Century Report

DR. STEINWACHS: Let me just hit the last item because I don’t want to cut
into the – we have made a exploratory commitment, I guess, on the idea but
not having gotten to specifics of what I have been referring to as the update
of the 21st Century Report on a Vision of Health Statistics. Part of
that being the idea of measuring and how much progress has been made over the
past roughly, six years on the recommendations that were made in that. Miryam
also, has offered to help staff this.

The other piece was to really look at some of the area that were really not
covered in there. So the roll over electronic health records and our vision of
the future and how electronic health records may both fit into the health
statistics – since this is a long term vision it open up a way to think
about – it is a lot different then saying, what can we do in the next five
years and so on, in that area.

Marjorie, you talked with Dan Freedman –

MS. GREENBERG: Actually it was Debbie.

DR STEINWACHS: Dan was on the committee – well he was one of the prime
actors that produced the report. MS. JACKSON: He is available to go on board.
We will just figure out how to make the best use of his time.

DR. STEINWACHS: So, I just wanted to raise I guess two things. One is that
– and maybe the place to start is with some telephone calls and inviting
committee members to be part of that, to talk about what would be specific
ideas, and include Dan in this, about the updating process of modernizing and
what areas that might be and the other is measuring progress. I think Dan would
have a lot of good ideas about the progress. This committee really needs to
think about what does it mean if we say well, how do we think the vision might
change as you thinking about changing technology and opportunities that are
there.

MS. GREENBERG: I think it was Dan, when we had that hearing, Justine, the
hearing that John Lumpkin was at. Wasn’t Dan there talking about population
data?

DR. CARR: Yes.

MS. GREENBERG: I think that those issues and how then you look at now the
big interest in using electronic health records and then how using them –
how it aligns with what some of the basic principles are of credible
statistical data as well. That really did not get addressed I the 2001 report
and I think it would be interesting.

DR. CARR: Actually we have that testimony – I think it is on the
website. I think you were there, too.

DR. STEINWACHS: I think I was listening – oh, I was there in the
afternoon. I missed the morning.

DR. CARR: That would be great to take a look at that because there was a
lot of very forward thinking.

MS. GREENBERG: I think some of the testimony in that hearing would be
relevant to this update. Of course, the point of view of a customer, Ed Sondik
would like the committee to do this. We invited the Board of Scientific
Counselors to partner with us on it. It is a natural, obviously. And also with
the 60th anniversary coming up – we rolled out the NHII and the
21st Century Vision for Health Statistics at the 50th. So
there are a lot of reasons to move forward with it.

I would agree that the next step is – of course we did not realize
that Garland would not be here at this meeting – because again, I think,
right now it is pretty much been between us and then Don, and me and Debbie and
now one conversation with Dan. But I think we need to convene a call and maybe
we can ask Garland if he would like to participate on the call. We could ask
Jim – again, I love to do this when people are not here to assign them
– but Jim Lepkowski, if he would like to – welcome your participation. I
had mentioned to Rob Weinzimmer(?), who worked on that 21st Century.
I will call people who worked on that and just talk about – okay, what
might this entail? What could we do? Would we need to have hearings or are
there other ways to gather the information on progress? Is there some kind of
contractual agreement here that we need to pursue. I think we should move ahead
with that.

We could tie in the vital statistics into this. Our focus on vitals since
it is obviously, a major part of health statistics. Also, this whole issue of
information for policy and the issue of information for health reform.

DR. STEINWACHS: We did not mention that Bill was now the czar of
information. Remember how he got appointed?

(Laughter.)

MS. GREENBERG: If we are clever we can tie in the medical home stuff, too,
probably.

(Laughter.)

DR. STEINWACHS: Larry, did you want to say something?

DR. GREEN: Some of what you just talked about pre-dates my participation
with things so I don’t want to be redundant. But at the same time I want to ask
if two ideas are on the table for this Health Statistics for the
21st Century.

One is the notion of sentinel surveillance. Is that already on the table?

DR. STEINWACHS: I think surveillance is part of it but “sentinel”
surveillance – sentinel events – you mean?

MS. GREENBERG: This was focused more on health statistics than on
surveillance – but there is certainly an overlap between the two. Sentinel
events, you mean?

DR. GREEN: Sentinel in terms of the source of the data that are used for
surveillance. When you have these large aggregated – well if they are not
going to be RHIOs, whatever they are, regional centers – I believe that
health statistics options open up that have never existed before. They don’t
rely on sampling necessarily, but they could rely on new types of sampling.

MS. GREENBERG: If you really have good coverage of data –

DR GREEN: If you really have good coverage – so for example, the CDC
used sentinel reports I the 70’s and 80’s, that non-randomly chosen primary
care physicians in the country reporting cough and sore throat starting in
August, correctly identified all influenza – and they did so two or three
weeks in advance of the laboratory surveillance system, the hospital
surveillance system, and they all caused mortality in pneumonia. Mortality
statistics went up like S curves right across the board.

If everyone had a medical home. If everyone had – if we had some of
these privacy and confidentiality issues solved, if we had the RHIO problem, if
we had the National Information Network in place, you probably would not go
about doing surveillance of infectious diseases the way we used to.

MS. GREENBERG: So you are agreeing with me that we could mold in the
medical home to the whole –

DR. STEINWACHS: We ought to look at the report about surveillance. I don’t
remember specifically what it said.

MR. QUINN: A couple of pertinent points. CDC has a program called Biosense
that has focused on the in-patients. Just last week they awarded three
contracts with the focus of prototyping and using the AHIC use case for
biosurveillance by health information exchange specifically to bring it to the
out patient.

MS. GREENBERG: Ws that the situational awareness –

MR. QUINN: Situational awareness. There were monster contracts – one
was $20 million, one was $12 million and one was $8 million.

DR. GREEN: If I could, I just want to make one other point and that is if
20th Century statistics in my view, emphasized diagnosis then
21st Century in my view, will emphasize progress and the methods
underline them and the data collection procedures are different.

MR. QUINN: I think how this relates to the medical home, and something we
should cover in our testimony, is that measuring – supporting the payment
methodology of the medical home is different than sort of the piece work
procedural methodology of today in capturing what happens.

MS. GREENBERG: An all longitudinal approach. You can’t do prognosis in a
cross section I time.

DR. STEINWACHS: We need to move to the next Committee meeting.

MS. GREENBERG: Debbie is going to set up this call. Is there anyone else
who is interested in participating on this call? Larry, would you be
interested?

DR. GREEN: On the 21st Century, yes.

MS. GREENBERG: Okay. I think we can pull it together. At least it will make
it a more integrated approach even if it doesn’t make it easier.

DR. STEINWACHS: Thank you.

(Whereupon, the subcommittee adjourned at 4:40 p.m.)