Transcript of the September 13, 2006 NCVHS Subcommittee on Populations Breakout Session

TABLE OF CONTENTS

• Welcome and Introduction – Dr. Steinwachs
• Discussion on Plans for Surge Capacity Hearings – Dr. Boenning
• Update on Data Linkages Meeting – Dr. Steuerle and Dr. Breen
• Discussion on Joint BSC/NCVHS Meeting – Dr. Steinwachs and Dr. Elo

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P R O C E E D I N G S [4:40 p.m.]

Agenda Item: Welcome and Introductions – Dr. Steinwachs

DR. STEINWACHS: — finalize the agenda for Monday and Tuesday but we do
have the advantage of having Doug here who has been recruited to help us with
the surge capacity issue but his support group, Kevin and Bill, have
disappeared, so why don’t we just so everyone knows everyone, why don’t we do
once around the room for introducing ourselves quickly and then why don’t we
talk for a few minutes just about some of the sort of interest and expertise
you bring and then we’ll move from there on, then you don’t have to stick
around, it may be a benefit.

So I’m Don Steinwachs, Johns Hopkins University and member of the
committee.

MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, member
of the committee.

MR. LOCALIO: I’m Russell Localio from the University of Pennsylvania School
of Medicine, I’m a member of the committee.

MS. PAISANO: Edna Paisano, Indian Health Service, staff support.

DR. ELO: I’m Irma Elo, I’m from the Populations Studies Center and
Department of Sociology at the University of Pennsylvania and I’m the liaison
with the Board of Scientific Counselors of NCHS.

MR. HITCHCOCK: I’m Dale Hitchcock with ASPE here in the Humphrey Building,
I can only stay for a little while, Don, if there are things I need to
communicate with Joan if you could, either by email tomorrow or in person, I’ll
be around tomorrow.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics and
staff to the committee.

CYNTHIA: Cynthia, staff to the committee.

DR. BREEN: Nancy Breen, I work at the National Cancer Institute.

DR. STEUERLE: I’m Gene Steuerle, I work at the Urban Institute.

DR. STEINWACHS: Let me just say that we’re very happy to have Doug work
with us because there had been discussions with Jim Scanlon and Dale, I don’t
know if you’ve involved in these too about who might be the right person who
could help us in trying to think through what would be some productive and
useful workshop or hearings around surge capacity and so I think Doug has just
had probably once conference call with Kevin and Bill but I thought if you
could just say a couple things about sort of what you might see that process as
being from your side and if there are, I understood also from Jim Scanlon that
there was some particular interest within ASPE and then sort of interest here
in the committee that parallel those in terms of both issues of data sources,
issues of measurement, issues of standards potentially. Doug.

Agenda Item: Discussion on Plans for Surge Capacity
Hearings – Dr. Boenning

DR. BOENNING: I’m Doug Boenning, I am an academic pediatrician, still
active clinically at Children’s Hospital here in town and based in a pediatric
emergency medicine department that sees over 70,000 kids a year. I’m using to
winging things even with a five minute notice I can give you a two minute
summary of what we’ve done so far.

About two weeks ago I was asked if I could help this subcommittee get a
handle on some of the information needs around emergency preparedness and
specifically the issue of surge capacity as it relates to bed capacity,
personnel capacity, equipment capacity. On September 1^st Kevin
Vigilante and William Scanlon and I spoke in an hour teleconference and just
brainstormed and have come up with a goal of trying to identify a group of
experts or diverse individuals and groups that could help us get a handle on
this question and convene them at an expert panel around January 2007. We are
in the process and are very open to ideas about who we should hear from and
we’ll probably offer a template of questions to them and then try to narrow
down a group to about ten people.

DR. STEINWACHS: Any comments or suggestions at this time?

DR. BREEN: Could I ask a question?

DR. STEINWACHS: Please.

DR. BREEN: Is surge capacity, was that sort of what when we were talking
about New Orleans, did it morph into this broader concept? I mean I think it’s
a good idea but I just was wondering if that was one and the same.

DR. STEINWACHS: I think a couple two things, one, Katrina and our capacity
to respond to that kind of large scale disaster, which has been unusual and
hopefully it’s only once in our only lifetimes.

The second was Kevin had sort of raised the interesting issue that to the
quality of care standards that we take as accepted under usual conditions, how
do they apply in a context of an emergency such as Katrina, do you change the
standards, do you say that what was we’ve got to do this all the time now you
say well, we’ll accept something less because of the nature of the
circumstances. And so trying to talk about it explicitly instead of saying well
those things happen and we accept it is different then saying what’s the level
of preparedness you need in order to meet a certain standard, and that standard
may not be as high, so there’s a quality of care kind of discussion imbedded in
this.

And then the third I think Bill Scanlon brought from his days in the GAO,
he brought was that I think they had some looking at some of these areas too
and when you talked about how do you measure it, how do you know what the
capacity is for surge and what are the elements of that and the fact that HRSA
and other organizations are using probably different metrics and different ways
of looking at it was also part of seemingly potentially this discussion.

And so all those pieces I think we’re sort of here and then Jim Scanlon was
saying that ASPE had an interest in it and I think again some point of view of
post-Katrina is, if you were thinking about bird flu in this country and
preparedness, do you have the kind of isolation capacities at hospitals or
something like, the answer is no. Well, if you’re building hospitals over the
next 50 years what might you do to have a way to have enough flexibility you
could take a room that wasn’t one, isolation. Some people are saying you ought
to have negative pressure in all rooms in hospitals, well, that’s a different
kind of twist.

So I think sort of this planning effort is going to have focus it and
decide where to go but it seemed to me that all those seeds were there and we
sort of talked about this idea of what does it mean to be from a preparedness
point of view quality research.

DR. STEUERLE: Can I just add one footnote because I know people want to
leave, but I think both what we’re trying to do with surge capacity, what we’re
trying to do with this meeting on linkages, came out of a meeting where the
subcommittee, and a little bit as part of the broader committee, was trying to
redefine itself, and I think there was general agreement, I may be wrong, maybe
my own bias because I certainly am leaning in that direction, that a major goal
of the entire committee as well as the subcommittee is to find where there are
real gaps in our information systems, our data systems, or real opportunities
that we’re overlooking, that that was really where you in many ways had a
relative advantage, even relative to say you might know those gaps but might
not be able to do anything about it. And so it seems to me these are two
examples and who knows, by next year we may have three or four others that I
just personally I find this really a very exciting direction for this
subcommittee as well as the committee.

DR. STEINWACHS: You described it well and I think that was sort of where we
all came together and said well, yeah, there’s a way to define —

DR. STEUERLE: Kevin and Bill came up with the surge capacity, gee, we need
to look at that too.

DR. STEINWACHS: Doug, you’re welcome to say if you like —

DR. STEUERLE: Did you have a couple more comments?

DR. BOENNING: No, we’re just early phases and this is a good time to
influence us.

DR. BREEN: Does FEMA have anything to do with the health care aspect of
this or is that entirely through DHHS?

DR. BOENNING: The health care aspect of information —

DR. BREEN: No, of emergency, their job is to make sure that emergency stuff
gets there and I didn’t know to what extent they’re involved in the medical end
of it.

DR. BOENNING: I don’t know the answer to that, I think the medical
authority is supposed to rest within this agency, HHS —

DR. STEINWACHS: I think DHS has a chief medical officer, Homeland Security,
has a chief medical officer but you say where do those medical resources come
from I would think it’s the Corps, SAMHSA as to provide mental health services
—

DR. BREEN: I know a lot of people from the Corps were mobilized for that
effort but I just was sort of wondering who was managing it, it just sort of
came to me.

DR. STEINWACHS: It’s always the surgeon general —

DR. BREEN: But FEMA has gotten huge criticism for doing a really poor job
and so if the medical corps and DHHS is administered by FEMA then that’s an
issue that maybe we should consider, I just was kind of wondering about it in
the context of whether FEMA should be included in this discussion.

MR. HITCHCOCK: Just very shortly, I mean yeah, we would have to consider
that, you would have to talk to people from Homeland Security and from FEMA.

DR. STEUERLE: We need to think about what types of institutions do you want
to approach for your hearings, an obvious first group is like the hospitals but
then all of a sudden you say gee, can’t leave out the nursing homes with those
huge problems, and then there’s the issue of what about the auxiliary services
like the people that might be providing transportation which then gets you,
there’s been a number of surveys, I’ve seen one or two of them, of like the
charitable sector, and you’re not going to get into the whole broader
non-health side of the issue but a lot of that ends up very health related.

DR. STEINWACHS: I think the President has suggested that maybe a time the
military should be providing a kind of response capacity, well, in concept they
could provide part of that health surge capacity too with mobile hospitals and
other things —

DR. BREEN: Of course they’re busy with other work right now.

DR. ELO: In the boarder context I think you do need to think about not only
sort of federal level responses but state level responses and local level
responses so you may want to also if you think about hearings think about state
health departments and local health departments which all are being charged to
thinking about emergency preparedness in many ways, right, I mean it’s either
through Homeland Security, talk about things and puts a lot of pressure on the
local communities to try and have a response and that’s where the immediate
response is going to have to be, not at the federal level but at the local
level and the local needs, it’s going to be really critical because —

DR. BREEN: In our initial discussions of this particular topic we talked
about maybe inviting representatives from some of the health departments that
work particularly well and New York City’s was singled out because apparently
if they wouldn’t have had the outstanding system in place, surveillance system
that they had, 9/11 would have been much more of a disaster than it was and
there’s been other examples where they really come to the fore and been
outstanding. I also understand that subsequent to 9/11 they haven’t been
getting adequate funding and that their readiness has deteriorated somewhat,
and so that might be, if you could get someone to talk about that as well, the
system they had and how its deteriorated and why and what are some of the
underpinnings, the problems.

DR. ELO: But in the same way you might want to get people from Louisiana to
come in where it didn’t work quite as well and what were some of the
impediments for them to actually mobilize and be able to address some of the
issues, what malfunctioned in getting ready for a disaster that everybody knew
was happening.

DR. STEINWACHS: And they’re in the process of trying to redesign the health
system and the sort of question comes up too as how do they see themselves
having the capacity they need in the future to respond to things, not hopefully
as drastic as Katrina.

MR. HITCHCOCK: Beginning to sound like a much bigger project than it
sounded like just five minutes ago —

DR. STEINWACHS: Dale, we were going to take on five years —

MR. HITCHCOCK: I think if Jim were here he might urge you to stick on the
data side of this, it’s very easy to go full blown and then we’re really a data
group —

DR. BREEN: It’s still data though, all this stuff is data, Dale.

MR. HITCHCOCK: When you start talking about, telling hospitals how to plan
new construction I’m not sure —

DR. BREEN: New construction —

MR. HITCHCOCK: We mentioned that, negative gravity in every room, I mean
that’s what I’m worried about, Nancy —

DR. BREEN: I guess I didn’t pick up on that.

DR. STEINWACHS: Well it wasn’t —

MR. HITCHCOCK: I don’t know how it would be used but —

DR. STEINWACHS: It seems to me that in the current climate if you’re going
to establish surge capacity probably you need to think creatively, it’s not
just having, building empty hospitals and saying we’ll wait until something
happens —

DR. STEUERLE: Well Doug may want this as part of the assignment but I think
inevitably as you refine your topic you’ll refine it partly by finding out what
other people are doing and deciding where you don’t want to duplicate.

DR. BREEN: Also Leslie Cooper who is a member of this committee actually,
she’s in the Corps and she was detailed to New Orleans and she’s quite
articulate on the issue and has a lot of things to say about it so she may have
some suggestions and she may also know some people who could talk about the New
Orleans system or the Louisiana system or something like that.

DR. ELO: If you want to focus on data needs, there was a big I guess
breakdown in vital statistics collection around the time of Katrina so if we’re
thinking about vital statistics, if you want to keep it sort of on the data
side you might want to talk to people like the National Center for Health
Statistics in the mortality and fertility branches because we basically lost a
bunch of records we have, from 2005 it’s going to be impossible to do any
fertility estimates for Louisiana, we don’t have any data on which to do them.
So what it is and that might be an issue that comes up tomorrow in the BSC
meeting because that’s sort of the capacity at the local level of maintaining
records that would be helpful in monitoring the impact of these kinds of
disasters. So if data is what you’re going to focus on then I think you’d want
to —

DR. BOENNING: We asked ourselves the questions, what information is
available, how can it be shared, how can it add to the coordination when
there’s an emergency, and we will pose this question to panelists but should
there be other information that’s collected by the federal government that
could aid in these kinds of events. Another topic has been with quality
information that’s being required from hospitals through CMS, is this something
that is closely linked to these issues. And then what’s the burden on say a
hospital to report all this information, if we’re collecting reams of data are
we really using it and are we harmonizing it with other sources of information,
how is it linked. These are kind of discussion, we’ve gone in and out and I’m
trying to use data and information and informatics as kind of a thread to hold
this all together.

DR. ELO: The group of people you might want to talk to is the group of
state registrars, NAPHSIS, that really actually tomorrow in the joint meeting
one of their representatives is going to talk a little bit about the issues
that you raised, some of the confidentiality issues but also data sharing, how
you can share data across, and so there is this organization of state
registrars I guess it’s called, national organization of state registrars, I
have your card so I will send you —

DR. BOENNING: Different then state and territorial health organizations?

DR. ELO: Yes, it is different, this is really the people who manage the
vital statistics records for the birth records and the death records, and
actually some of those issues will come up tomorrow in the joint meeting.

DR. BREEN: And then one of the things that we heard a lot about was the
hospitals that were set up for Katrina were set up hundreds of miles away from
where the disasters were and where the need was and one wonders why and if that
was a lack of communication or what the thinking was or not thinking.

MR. HITCHCOCK: I guess the evacuation plans is sort of the other half of
surge capacity.

DR. STEINWACHS: You’ve gotten lots of ideas, any time you want to broaden
the ideas —

— [Laughter.] —

Agenda Item: Update on Data Linkages Meeting – Dr.
Steuerle and Dr. Breen

DR. STEINWACHS: Let me, I know Cynthia feels a little pressure is we let
the hotel know about the room layout for the meeting and we also need to go
over the agenda for the data linkages meeting so why don’t we shift gears to
that and then we were going to come back and talk about the meeting tomorrow,
if there are things, trying to build bridges with the Board of Scientific
Advisors and then we’ll pull that to a close.

Cynthia, I don’t know, I’ve seen the layout, do you want to just talk about
how sort of the room layout is and the question, can people see this? Gene, why
don’t you take a look.

DR. BREEN: It looks like this room only maybe three times this big with a
bunch of chairs down there.

DR. STEINWACHS: So the kinds of questions are, one is should there be a
table at the front and should more than one person be able to sit up there, is
this like a panel or is it just someone comes up and speaks by themselves,
because at times we were talking about a panel —

DR. BREEN: Sometimes we sit at a table so that we can ask questions and
then the audience is invited to ask questions afterwards, do you want to do it
that way or what would be your preference?

DR. STEINWACHS: Well I thought that the committee ought to sit at the
table, the other question was should, where are the speakers sitting too, are
they at the table with us, are they in the audience, are the ones that are
currently in a panel up front, and so I just wanted to get a sense if there
were preferences about what would facilitate what we want as a dialogue.

DR. STEUERLE: Before I can answer that question can you tell me which of
the speakers really plan on attending the entire session and which ones plan on
just popping in and out? Because a lot of popping in and out, that has a
different make-up, if they’re going to be there for most of the meeting I’d be
glad to have them at the table.

DR. STEINWACHS: I don’t know that Cynthia or I know that, Cynthia, do you
know how many of the speakers plan on staying for the entire meeting?

CYNTHIA: No, but that question is never asked, it is suggested.

DR. STEINWACHS: So I think we, Gene, probably you and I will guess the same
way is that there may be a few who find it sufficiently engaging but I would
think they would more come for a morning or come for an afternoon, they may not
pop exactly in and out but it probably won’t be too far removed from that. So
do you have a suggestion about what we should do?

MS. JACKSON: Considering your intention on, the focus on changing the name
and making sure it was clear that the workshop versus a hearing, the intent was
to get as much information from a group of people who could, and I thought that
Joan emailed with a suggestion, did let them know they were invited to stay so
that there could be —

DR. STEINWACHS: And they certainly are.

MS. JACKSON: — kind of interchange and communication, so to make the
layout as conducive to that then you would have more of like a table so if you
have more than one or two then they could be together, have eye contact, have
something to change back and forth if they have additional asides if one is
speaking and be able to address questions at a certain time in a give and take
kind of manner. So this is more conducive than having one spotlight for one
person as if they’re just holding forth.

DR. STEINWACHS: If we take that suggestion I guess then we would try and
have space for them sitting around the U shaped table, we’d have a podium and a
microphone for the person who’s currently speaking, is that —

DR. STEUERLE: I think you would want to have your U, have the back of the
U, I mean what we often do is to make it feel like it’s a workshop we’re
putting together is a heavy U and the reason you have several rows in the back
is mainly because you just don’t have enough room for everybody, but you try to
make sure around the U you really have the people you especially want but of
all the people here plus our committee that’d be a fair number already. But it
doesn’t make it if you’re in the second row in the back, you’re really not
excluded, it’s just you came late. I would say we sit randomly, not even
together as a committee, we just sit randomly around, we’ll be in the U because
we’re going to be, and have a number of microphones set up like we do upstairs
and then it doesn’t matter so much whether the person speaking is right in the
center, where you are right now, Don, as opposed to where Russell is or
something. I wouldn’t worry about that, I would just have them at the table
when their time comes to speak. That also solves the problem of if you’re the
first speaker and you come in and leave and then the next speaker who thought
they were going to be there all day might say gee, I guess I’m just going to,
it’s just more conducive to not making a big distinction between who’s coming
in and out versus who’s staying for a while.

DR. STEINWACHS: What we do here is sort of close off a little bit the top
of the U and have the person when they’re presenting move up there. I was just
thinking about the people who are sitting behind, if someone is just sitting at
the table talking to their back —

DR. STEUERLE: Well certainly if they have a Power Point or something then
they need to be situated near where the computer is that’s going to be flashing
up there.

DR. BREEN: Did everybody send Power Point, Cynthia?

CYNTHIA: Not yet but everybody indicated that they would be sending Power
Point.

DR. STEUERLE: So I guess you do have to have a place up front then for the
person at the point they’re speaking but they could have a separate spot at the
U for when they’re not speaking.

DR. STEINWACHS: Yes, so do you think we ought to put them at a table,
sitting with a computer and a Power Point or at a podium, I guess that was the
other —

CYNTHIA: Well the podium is an additional cost —

— [Multiple speakers.] —

DR. STEUERLE: I would have several people at the front, I mean the
distinction I make is using that diagram —

DR. ELO: There’s empty space in the front.

DR. STEUERLE: I’d let four or five people sit up front, if the Power Point
is right behind them they’re all going to have to shift a little bit anyway to
see the Power Point, let four or five people sit up there but just make sure
there’s always one or two chairs for the speaker.

I guess what I’m thinking of almost it’s like this is not a table here,
this is open so people can be and you actually have another table here and so
the people sit here, I’d be open on the other end so basically it opens up to
everybody.

DR. STEINWACHS: Is to have two tables —

DR. STEUERLE: So three tables —

DR. STEINWACHS: Two parallel tables and a table at the front.

DR. STEUERLE: Three tables, just turn this U upside down.

CYNTHIA: Okay, I hope that works, I’ll have to find out, I’ve never been
there, I don’t know but that’s what you suggest. Okay, so it will be all of the
speakers for that day and all of the committee members —

DR. STEUERLE: And any staff person who needs to be there too for notes or
whatever, I mean you may not have enough room, if we need to rotate around we
can always do that because I don’t know how much room you’re going to have.

DR. STEINWACHS: Looks like 30 people probably, from the number of people
here —

Is there anything else on the layout and so on?

CYNTHIA: No, that pretty much takes care of the layout. Michael Deveron(?),
he wanted to know what the structure of the panel was, he wants to know can he
give ten minutes statements and then leave the rest open to a moderate
discussion.

DR. BREEN: Who is Michael Deveron again?

CYNTHIA: He’s traveling in, he’s the only one, he’s one of the people
that’s traveling.

DR. BREEN: Oh, I see him, he’s assistant professor University of Minnesota
and he’s going to talk on broader perspective on the role of —

CYNTHIA: So I told him I would get back to him so what do I tell him?

DR. STEINWACHS: I thought in concept, and I’m just I think saying what
Eugene and Nancy would say is that the idea was to have presentations but have
maximum time for discussion and questions, so I don’t see any problem if
someone feels that in ten minutes they can communicate what they have —

DR. BREEN: That’s a two hour session.

DR. STEINWACHS: Well, there’s another speaker there too, this is the end of
the day on Tuesday, and if it ends early, otherwise we’ll press him for more,
and we can do that too, we can say we want 20 minutes.

CYNTHIA: So tell him it’s okay.

PARTICIPANT: He wants only ten minutes?

CYNTHIA: Well what have you asked him to talk about?

DR. BREEN: We’re flying him in from the University of Minnesota for ten
minutes?

DR. ELO: He may have a lot of insights so maybe he just lays out questions
that people need to think about, I don’t know, like what are the main issues or
something —

DR. STEINWACHS: Why don’t we do this since I think, I think we sort of
expected maybe each speaker to speak for about 20 minutes and then to have
plenty of time for discussion and why don’t you just tell him that in general
we had suggested about 20 minutes, he ought to do what he thinks —

DR. STEUERLE: Can I just ask are the times set on this? The first one we’ve
got, in Census we’ve got three people in a half an hour —

DR. STEINWACHS: But we’ll probably, these things sometimes you end up
starting —

DR. STEUERLE: I’m just wondering, Julie Lane we now have for 20 minutes for
one, then we have seven people for three hours, we have 45 minutes for Howard
Eames(?), then we have three people in one hour and then we have three people
for two hours. So I mean we have very, very widely varying times on this —

DR. STEINWACHS: I think maybe our only constraint at this point I’m
guessing is people know when their session is right —

CYNTHIA: Well, they’ve got this and if we make some changes I’m going to
have to send it, and we are going to make changes, right, because this is not
final.

DR. ELO: The Census Bureau seems to go from 9:30 to 11:15 and the break —

DR. STEINWACHS: So why don’t we just walk straight through because Cynthia
needs us to finish off this as the final agenda and so just as you’re
suggesting, Gene, I think we can do some tweaking of times, we probably can’t
move them substantially.

So Gene and I decided we were doing the opening and I only had to talk
about the NCVHS and the Populations Subcommittee and Gene was going to talk
about the sort of goals and thrust of this inquiry into data linkages and what
we were looking for so to help set the stage.

DR. STEUERLE: I think Nancy might want to add a couple comments here too.

DR. STEINWACHS: Well have Nancy too, smile, Nancy, yes, okay, so Cynthia,
why don’t you just lump together the call to order, welcome and introductions,
and importance of data linkages and then list myself, Nancy and Gene, we’ll
just make it one lump session and then we can come back and fine tune the time.

DR. STEUERLE: Well, things never start on time anyway.

DR. STEINWACHS: I figured we’d buy, and if we were ahead of schedule who
cares if we move to the next speaker, so we’ll leave it then 9:00 to 9:30 with
the three of us. And then I was also looking to have a committee member be a
facilitator for each of these sessions, Joan told me that she would be
interested in doing she said the access session which is the one on Tuesday I
think 10:00 to 12:15, so I thought if we could put down Joan as the facilitator
for that —

CYNTHIA: There’s also a word missing at the end of that —

DR. BREEN: Access for research and related, is that supposed to be issues
do you think?

DR. STEINWACHS: And health statistics —

DR. BREEN: Data?

DR. ELO: I mean it seems to me like it’s access for researchers and access
to who?

MR. HUNGATE: Could be reports couldn’t it? Related reports?

DR. STEINWACHS: Well access for researchers, I guess research or
researchers —

DR. BREEN: Maybe just leave it access for researchers, what about that?

DR. ELO: Who else might want this? Policy makers?

DR. STEINWACHS: Cynthia, why don’t you try and ask Joan, did Joan help make
these titles? Cynthia is going to ask Joan because there was a word there and I
don’t know whether it makes any difference in terms of what the scope is of
what people are expecting but it was just access researchers I think what
you’re saying is that would be find but if there’s something more that ought to
be there then —

CYNTHIA: So Joan is the facilitator for this session?

DR. STEINWACHS: Yeah, and that was what she had, let’s go back to the first
page, Census, who would like to facilitate the Census? I thought the
facilitator had really two jobs, one was just brief introductions and the other
was to play timekeeper in the sense of —

DR. BREEN: I can do that, I’d be happy to facilitate any of them.

DR. STEINWACHS: Okay, Nancy, I’ve got you down as facilitator then for the
Census and that runs from 9:30 until I guess lunch —

CYNTHIA: Sally Obinsky(?) I guess, she asked me would she have time for
questions and answers, and I told her probably from 11:15 to 12:00, would that
be around thereabouts?

DR. STEINWACHS: Well let’s discuss how we want to do that, I mean I guess
there are two sorts of format, just have each of three speakers and then have
open discussion or have speakers and have a limited number of questions allowed
and then go to the next speaker and then still hold time for discussion at the
end.

DR. BREEN: One possibility would be for the facilitator to have a quick
conference call with these folks if that would be possible and just have them
kind of organize it that way and say, try to make sure that they’re covering
the subject, they’re not being too redundant, and finding out how they’d like
the questions or the discussion.

DR. ELO: There seems to be slot between 11:15 and 12:00 that’s empty —

DR. STEINWACHS: So Cynthia, why don’t we just list this as going from 9:30
to 12:00 as the Census, it’s not Census Bureau or is it?

CYNTHIA: Yes.

DR. BREEN: Well, they’re all people from the Census Bureau and I think it’s
better that way because it’s not all the Census data, they do a lot of surveys.

DR. STEINWACHS: So 9:30 to 12:00 Census Bureau and then you could insert
the break in the middle of that.

CYNTHIA: 10:00 to 10:15?

DR. STEINWACHS: Nancy, what do you think?

DR. STEUERLE: Do I halfway in between.

DR. STEINWACHS: So 9:30 to 12:00, about an hour and 15 minutes in, so maybe
10:15 to 10:30.

CYNTHIA: Okay.

DR. STEINWACHS: And then depending on who’s speaking or what we can slip it
a little bit if we have to slip it one way or another but at least it
recognizes there should be a break.

Lunch is on people’s own I assume —

CYNTHIA: I have a list of eating places that Sabrina has sent me and it
will be in the folders.

DR. BREEN: That should be on the agenda too so people know.

DR. STEINWACHS: On your own, okay. Those of you with experience is an hour
going to be enough? Should it be an hour and 15 minutes?

DR. STEUERLE: Given that this is a relatively long session I think you
could give an hour 15.

DR. BREEN: So would you take it off the session? Make it 11:45?

DR. STEINWACHS: 11:45 to 1:00, why don’t we do that, lunch on your own, and
then —

DR. STEUERLE: We do an hour here and we go right upstairs.

DR. STEINWACHS: Okay, then the afternoon session, the NORC speaker and then
there’s Health and Human Service agencies —

DR. STEUERLE: Which would start at 1:20 now instead of 1:00.

DR. BREEN: It looks like Julia Lane is speaking for an hour and a 20
minutes, is that true?

DR. STEINWACHS: 20 minutes. Do you want to make hers from 1:00 to 1:30 and
then go 1:30 to 4:00 with HHS?

DR. STEUERLE: And I think you’ll need an afternoon break too.

DR. STEINWACHS: I’m human, I think so. And then we’ll put a break in there,
what about, 2:30? 2:30 to 2:45?

CYNTHIA: How long is Julia Lane?

DR. STEINWACHS: Make her 1:00 to 1:30 and then we’ll go 1:30 to 4:00 and
maybe a break from 2:30 to 2:45.

DR. STEUERLE: Well actually we have Social Security at the end of the day
so actually you’d want to break after an hour, you’d want the break —

DR. STEINWACHS: Want to make it 3:00 to 3:15? I said 2:30 to 2:45, that’s
an hour and a half in, we could take it two hours in, 3:00 —

DR. STEUERLE: I guess that’s all right since you start at 1:00, I guess
that’s all right, 2:30 is fine I guess. We can play it by ear depending on how
the conversation —

DR. STEINWACHS: We can always slip it around, it’s nice just to identify
that there will be a break.

DR. BREEN: Because the first day there’s no wrap-up, right, we just wait
until the second day to wrap-up?

DR. STEINWACHS: Yeah, so essentially we’re going to 5:00 I guess.

DR. BREEN: So will you say something at the end then thanking people for
coming and telling them that we’re meeting again the next day at 9:00.

DR. STEINWACHS: I’ll do it but I don’t think we have to put it on the
agenda.

Okay, we need someone to be the facilitator for the afternoon.

DR. STEUERLE: You can put me anywhere you want, I don’t really care which
one.

DR. STEINWACHS: Russ, would you like to or Bob? Irma? Anyone else?

DR. ELO: I teach on Mondays and Tuesdays unfortunately so I can’t come at
all, I’m sorry.

MR. HUNGATE: I won’t be there either, you can’t count on me for anything
else.

DR. STEINWACHS: I always count on you. Well, why don’t we do this, Gene,
why don’t you take the afternoon as a facilitator. So Nancy does the morning,
Gene the afternoon, okay that takes us to —

MS. JACKSON: Before you leave and go to the next day, in terms of the
people moving for these number of people for this amount of time and what
you’re trying to get out of it, I’m just looking at dynamics and you’re already
looking at the seating chart as they come in, they’ll be seated at the table,
as each one is giving out their material what’s the best way that you’ve been
able to pull this together, like it’s a bullet and each person, there’s a lot
of speakers here, I’m wondering what’s the best way to organize it. The
facilitator will be timekeeping and you’re going to have a natural break in
there at 2:30 but what’s the best way for you to get the bang for your —

DR. BREEN: Well are you thinking that there’s going to be a lot of handouts
or what we, are people going to be moving or what were you thinking, Debbie,
that we need to plan for?

MS. JACKSON: Just to give them guidance, they’re going to come in where do
you want me and giving stuff out —

DR. ELO: But if the facilitator tries to speak with the group prior to that
day, that was one suggestion, whoever is the facilitator to have some contact
with them —

DR. STEUERLE: A natural division on this particular day, I haven’t looked a
the next day, might be for the three speakers from the Census Bureau to give
their presentation, I mean I think the moderator is going to feel his or her
way through it, if it’s long enough then that’s probably the time you take the
break, come back, you could sort of, I think the facilitator is going to have
to almost discuss with them right up front how long do they really want and if
one says I want an hour then obviously they got to cut them off but if they all
say five minutes then there’s a different dynamic. And the Health and Human
Services one you could see whether you could get all seven of them in, defining
point of the break, if they all really need 15 minutes each you might have to
actually cut it off after five and then say well we’ll take the break then.

DR. BREEN: I know Martin and Jerry Riley have developed a presentation
together.

DR. STEUERLE: That’s good. I have a feeling people are going to be all over
over how much they have to present, because we didn’t really give them strong
guidelines did we —

DR. ELO: You could ask like Jenny Garfield(?) will be here tomorrow for the
meeting, the joint meeting, you could get a sense from her —

DR. BREEN: I think most people would assume 15 to 20 minutes, that’s
typically what the amount of time when you’re asked to speak at something like
this, it would be good to give them guidelines.

DR. STEINWACHS: Another thing we might try, should we call them moderators
or facilitators —

DR. BREEN: I like facilitator but it doesn’t matter.

DR. STEINWACHS: — maybe to try and, I thought the other point might have
been to try and at least identify two or three of the major threads that came
out in the session, not trying to summarize the whole session, I just meant at
the end sort of to try and pull together as facilitator you saw as the two,
three, four sort of major points that came through from people’s successes and
barriers possibly, then we will have, it’s being recorded so we will have a
transcript and so on from it but all of the committee it seems to me that’s
there needs to also be taking notes and sort of thinking about what is it that
we’re learning that helps us think about what we can do to sharpen the
opportunities of having people understand how to make successful linkage
processes and how there might be opportunities to overcome barriers that would
allow us to produce better information relevant for health and improving health
outcomes.

MS. JACKSON: You did have a very nice layout of what they did ask the
speakers to comment, Joan was very careful on that so as long as everyone is
cognizant that then that will be a nice target, this is what we asked you to do
—

DR. STEUERLE: When we start on Monday could you bring us copies of that
again? I think that’s probably good for all of us, at the beginning of every
session to remind the speakers because we did talk a lot about we wanted the
speakers to focus on, it’s almost like, sorry to speak like an economist but
it’s sort of like a benefit cost analysis, you want them to identify where
there’s potentially substantial benefits from doing something new and what are
the costs and barriers to getting there which could be legal as well as
resource based.

DR. STEINWACHS: Okay, Tuesday, I’ll again sort of just welcome everyone at
the second day of the session and so on and then for the morning —

DR. STEUERLE: Why don’t we just have Joan for all of it if she wants to do
the 10:15 —

DR. STEINWACHS: Okay, why don’t we have Joan do both, so she’ll just take
the morning —

DR. BREEN: And if she doesn’t want to I can help her out.

DR. STEINWACHS: Do you want me to take the afternoon and the five minute
speaker —

DR. STEUERLE: Russell, did you want to take one? You’re the only person in
the committee aren’t you that’s going to be there?

MR. LOCALIO: I’m the only person who’s going to be here when?

DR. STEINWACHS: After lunch to be the facilitator for the last session of
the NORC, the vice president, president of ASA and Michael Diamond, a broader
perspective, all you have to do is sort of introduce them.

MR. LOCALIO: Sure.

DR. STEINWACHS: I will facilitate the facilitators.

DR. BREEN: So, Russ, I thought you weren’t going to be here, it’s just
Monday you won’t be here, you’ll be here on Tuesday?

MR. LOCALIO: I’ll be here.

DR. STEINWACHS: Russ will be here for both days.

MR. LOCALIO: I do have to leave promptly but I’ll be here.

DR. STEINWACHS: If you have to leave and it’s mid-course you just hand it
off, a lateral, here Don, go for it.

MR. LOCALIO: I do want to say that the Institute of Medicine report that
came out last year, I had a doctor’s appointment and had to wait two hours so I
read the whole thing, it was on record linkage and then access to data. It was
very good reading in preparation for this, they really lay out a lot of the
points, it’s also easy reading, and especially for the second day I think, and
I forget who is on that committee, I can’t remember anymore, but that’s very
good reading.

DR. STEINWACHS: Maybe we ought to try and get copies for the committee.

MR. LOCALIO: If it’s possible, I don’t know, I downloaded mine and paid $12
bucks or something, but there may be a copy —

DR. ELO: It sounds like it would be helpful to read it before —

DR. STEUERLE: Which of these speakers is liable to use that as a
background, the HHS speakers?

MR. LOCALIO: I don’t know —

DR. BREEN: Connie Citro(?) —

DR. STEUERLE: Connie’s not coming now, right, wasn’t she the one you said,
when I talked to you earlier you said you thought had bowed out —

DR. STEINWACHS: One who I know bowed out was who was going to do the
opening which was OMB, but I don’t know, Cynthia, all the people here you are
expecting, right?

CYNTHIA: Yes, now.

DR. STEINWACHS: So I think all of these will be confirmed —

CYNTHIA: We had a couple of replacements like Spike Dooser(?), David Gibson
will be replacing him —

MR. LOCALIO: — that person should be well aware of this, that would be —

— [Multiple speakers.] —

DR. STEINWACHS: I think what you’re saying is that Dr. Citro is probably
going to talk about that report —

MR. LOCALIO: Well, or refer to it, if not I will.

DR. STEINWACHS: But let me see, the name of the report was what?

DR. ELO: Data Linkage for the Data access or something —

MR. LOCALIO: Something about access to data, you know what I should do, as
soon as I get home I should email you the title and I don’t know where I’ve
got, I’ve got an electronic copy, I just don’t know where it is, if I have it
I’ll send it to you.

DR. STEINWACHS: I can download it, I was just thinking I would see if
there’s a way since you thought it was worthwhile see if we can get copies for
the committee, talk to Marjorie about that, what the budget allows.

MS. JACKSON: And we’ll start off the day with the opening 9:00 to 9:10 open
and then start off with the panel, and just because the members aren’t here
doesn’t mean you can’t assign them, isn’t that our routine with Kevin and Bill?

DR. STEINWACHS: Well, I’m pretty sure Bill will be there, I don’t know
about Kevin, so we can assign them too. Okay, why don’t you do that and then
essentially the morning session goes from 9:00 to 12:00 I guess —

DR. BREEN: On the second day?

DR. STEINWACHS: Yeah, I was trying, I think we need to leave another hour
and 15 minutes for lunch, do you want to make it 9:00 to 12:00 and then that
leaves 1:15 to 3:15, that’s actually too much time for just two —

DR. STEUERLE: Can we just shorten the time? The one thing I know, people
always tell me and I really believe this is you want people to go away hungry,
they feel good about a meeting, if they go away feeling exhausted then they
feel like, I’d rather keep the session short than long if I have to have a
bias.

DR. STEINWACHS: So see if this works, if we go from 9:00 to 12:00, have
lunch from 12:00 to 1:15, the two speakers, instead of 1:15 to 3:15 you want to
give them, speak 20 minutes each so that’s 40 minutes, so 1:15 to 2:20 at the
most? And then there would be discussion and wrap-up, maybe that’s it, or
something like that, the idea that this would be a chance to have, what I’m
really looking for is some time for the committee and other people are there to
talk about what we’ve learned over the two days. It’s sort of undesirable it
seems to me to leave without having some discussion —

DR. STEUERLE: Well I think since Russell is going to be moderating it seems
to me that he can play the flow, if it looks like there’s a huge discussion
with these two people, it seems to me these are actually two, discussion and
wrap-up is closely related to the broader perspective and so you can almost
flow one into the other depending on your judgment of what’s happening at the
time.

MR. LOCALIO: Actually I’m going to make a request, I prefer to be in the
morning, I’d prefer to moderate the one that Constance Citro is in given that
—

DR. BREEN: Joan wanted to do that.

MR. LOCALIO: Oh, okay.

DR. BREEN: Do you want to do the IRS? Education —

MR. LOCALIO: Yeah, I’ll do that, that’s fine. Now is Richard Borklin(?) the
director of the Veterans Administration? Or director of something?

DR. STEINWACHS: He’s director of something with in the Veterans
Administration —

MR. LOCALIO: Let me do the first thing in the morning because that’s, yeah,
that’s a little bit more down my line.

DR. STEUERLE: The reason Joan wanted to do this is she is really, really
big on giving researchers access to the data developed within the government, I
think that’s the reason she was interested in that.

DR. BREEN: Well I think everybody that is at this panel you’re going to
find is very keen to give access to researchers.

MR. LOCALIO: So I think that report, that Institute of Medicine report
would be most relevant and as soon as I, actually I may be able to retrieve it
tonight, let me see, I know where I have it.

DR. STEINWACHS: I’ll ask Marjorie.

MS. JACKSON: The ending time still, we may move things up depending on how
the discussion is going —

DR. BREEN: I would keep it until 4:00 and —

DR. STEINWACHS: We run out of discussion we can always end early —

DR. BREEN: Exactly, because people will not stay later but they’ll be
delighted to go home earlier.

DR. STEUERLE: We cut 45 minutes out of the linkage discussion, it seems to
me you can, I’d cut out the 45 minutes.

DR. STEINWACHS: Let’s compromise, why don’t we make it 3:30 —

CYNTHIA: Is Joan facilitating the last session?

DR. STEINWACHS: So the last session, do you know if Bill Scanlon is coming?
Why don’t you do this, why don’t you check and see if Bill Scanlon is coming
the second day then tell him we’d like him to facilitate that, if not I will do
it, why don’t we just do it that way so if we can’t get a hold of him let me do
it.

DR. BREEN: It might make sense for you to do it because that’s the one
where you’re going to make a judgment on the spot about whether to continue the
discussion or stop it and start a new discussion depending on what’s happening
so maybe you should do that.

DR. STEINWACHS: Okay, I volunteer, let Bill off the hook, put me down as
facilitator for the last session.

Well, Cynthia, I want to thank you for all your work on this —

— [Applause.] —

DR. STEINWACHS: Plus Nancy and Gene and Joan who isn’t here —

DR. BREEN: Joan was amazing, she really broadened the scope of this in a
very nice way and as a result gave it depth.

DR. STEINWACHS: I think this is going to be fantastic.

MR. LOCALIO: This is long over due, this is long over due.

DR. STEINWACHS: Anything else on this? Do we feel ready to go?

DR. BREEN: Do you have everything you need? Do you feel like you have an
agenda that’s complete, no gaps?

CYNTHIA: I think so —

DR. STEUERLE: Are you going to hand out bios or anything, is there anything
you have as handouts at all?

CYNTHIA: That’s what I was going to ask, do you all have any handouts?
Because the only handouts I will have will be from the slides that the speakers
give me so do you all want handouts of any kind?

DR. BREEN: I think if you could have a little packet with all of the
slides, with like three slides and then those lines so that you can take notes
on them, I think they call them note slides —

DR. STEUERLE: Instead of doing the whole big one you do the draft one or
whatever, the Power Point.

MR. HUNGATE: Wasn’t there a set of questions that were to be addressed?
That ought to be in there, the original —

CYNTHIA: So you want folders for all of the speakers and you all?

DR. STEUERLE: I don’t think it has to be a folder, you could have a table
set, I don’t think it has to be all that fancy.

MR. HUNGATE: Try to stimulate date linkage, having folders for everybody is
a pretty good idea.

MR. LOCALIO: Is there going to be a power cord to plug in a computer do you
know?

CYNTHIA: Yes, I think ABR is doing it so yes, I think it will be the same
set-up as we have.

DR. BREEN: Now also since we are trying to stimulate linkages it would be a
good to have a sheet with a list of participants and their contact information,
do you have that already? Is that something you could put together?

CYNTHIA: Yes.

DR. STEUERLE: They might want to contact each other.

DR. BREEN: That’s what I was thinking because I’m hoping this is going to
lead to a lot of that.

DR. STEINWACHS: Anything else you can think of we need?

DR. BREEN: Do we want the letter of invitation or just the questions?

DR. STEINWACHS: I think just probably the questions, I thought, Cynthia I
don’t know whether you have here with you any, copies of the letters or
anything, I just thought for Nancy, Gene, myself, Russ, who are going to be
there to remind us of what the questions are.

CYNTHIA: No, I didn’t bring that, I mean I can go around —

DR. BREEN: You sent me an electronic copy, you could probably just send an
electronic copy, email them to us.

DR. STEINWACHS: Why don’t you do that? You could do it on Friday if that’s
feasible, just so that over the weekend we can think about it and then you’ll
have a copy there of the questions.

CYNTHIA: Okay, so in the package you want the note slides, the list of the
participants, a copy of the agenda and the questions.

DR. STEINWACHS: I think that’s sounds, yeah.

CYNTHIA: And this is for the committee members and all for all of the
speakers.

DR. ELO: If you could email me when you put it together I would love to see
the slides, I mean this looks like a terrific program and I really wanted to
come but they pay me to teach so I can’t.

DR. STEINWACHS: You should remind them —

DR. STEUERLE: I think if we increase by about 50 percent the number of
NCVHS meetings we could all quit our jobs.

CYNTHIA: I have a feeling that most of the speakers will be bringing their
slides with them on the day that they’re going to speak and I will only receive
a few so I can put those in the folder, but since we have no copying facilities
down there, at least nothing that we want to use, so should I send them to you
later?

DR. STEINWACHS: Yes —

DR. ELO: Maybe you could ask the speakers to make sure that they send an
electronic copy.

CYNTHIA: Oh I’ve done that but you know that doesn’t work —

DR. STEUERLE: How far away is the hotel? I just wondered if it’s possible
you could have like an intern who could just be there and if you wanted to send
her back to the department to make copies now?

MS. JACKSON: It’s not available, I’m sorry, we have to let the speakers
know what they bring is what we have, if they haven’t sent us electronically
for us to copy at our home base and for us to bring it down then it just is not
available. I’m only back in the office on Friday, that’s why I’ve been begging
—

DR. ELO: If they copy their slides on a computer and then —

DR. STEINWACHS: I’ll bring along a memory stick and so on if that helps,
but I think we’re expecting all the speakers to give us a copy of the slides
and if not somehow we will get a copy of all the slides so that after the
meeting for those that you didn’t get during the meeting we can get copies to
the committee because I agree with you it’s the only way to sort of disseminate
some of that information.

Agenda Item: Discussion on Joint BSC/NCVHS Meeting – Dr.
Steinwachs and Dr. Elo

DR. STEINWACHS: Okay, great. Let me take you on to the next item if you’re
ready, we have a joint meeting tomorrow of the BSC and the NCVHS and the reason
for putting it on this agenda was to have maybe a little discussion with the
whole committee about some of the expectations that we were looking for some
areas in this joint meeting that might be things of joint interest and
therefore something would go on beyond just having one joint meeting and saying
hello to each other.

And so I was going to ask Irma just to say a little bit about how we
structured the joint meeting and then I thought maybe we could talk a little
bit about are there some areas that we think it would be good to have if
members of the BSC are interested, maybe they’re continuing participating in
some of the things we do fall into a joint area of interest and vice versa
maybe there are members here who would like to participate in workgroups of the
BSC. This idea was to look for the overlap and where there are overlapping
areas was to work on them somehow jointly or at least communicate or whatever.
Irma?

DR. ELO: My understanding of why this is happening is in part because the
staff of the NCVHS and the BSC and there had been some discussions of trying at
some point to bring these two groups together and I guess in particular because
I think the NCVHS has gotten much more away from sort of population level
health statistics and it seems like that there might be some ways in which we
could bring some of those linkages together.

When we brought up this idea of the meeting to the BSC there was some
skepticism on the part of the BSC in that they didn’t want to just have a
meeting where we say hi, how are you, and we do this, you do that, that there
would be some structure to the meeting so that if people would feel like it was
productive, that they had learned something that either would lead into some
kind of a discussion or that there was actually discussion of specific topics
rather then people just going around the table and saying what they do.

And I think when we had a couple of conference calls with Simon and Don and
Bill and I and then June who is the head of the BSC I think Simon also and you
and everybody else felt strongly that there was some kind of an agenda so that
we would be able to gather around specific issues. And then the question was
what would be some of these specific issues that might be of joint interest and
sort of overlapping concerns between the BSC and NCVHS. And one of the issues
that sort of came up, partly because I felt that you guys were focusing on it a
lot and it’s a big topic of conversation now is these issues of
confidentiality, that confidentiality relates to many of the things you do with
health record systems but it is now beginning to spill over in a big way to
natality and mortality vital statistics. There’s a lot more restrictions that
are being put on whether release of those data to researchers which sorts of
gets back to these issues that you’re going to be discussing in the meeting on
Monday and Tuesday, but also there is some question of how you might eventually
integrate them into national health information system and reengineering of the
health system, computerizing all these data and such.

So this is a pressing issue, or somewhat pressing issue right now at NCHS
and it relates to some of the issues you brought, so we thought this might be
one other where there might be broader interest on your committee because
confidentiality is a concern to all of you rather then just focusing on
population health issues as such which I think there are a lot of common
interests between this committee and the board, but not necessarily on HIPAA
and all these other things.

So we came up with this agenda which is basically focusing on the
implications of confidentiality requirements in natality and mortality vital
statistics, and we felt that there should be a presentation on what are sort of
the key issues before we turn it open to discussion and so the issues that the
confidentiality requirements have really been coming up from the states, the
states feel like NCHS is doing things that are not within the legality of the
state laws so we have a presentation by Steve Schwartz who is the vital
statistics register of the New York City Health Department, and also is in this
NAPHSIS register’s office that we were talking about earlier, and then some
NCHS perspective.

And the other one was the reengineering of the vital statistics system and
the role of health information technology which overlaps with some of the
issues that you have discussed.

So those, it’s sort of not all that long, a couple of hours, trying to
identify some of these concerns where I think your committee’s influence within
the Department can actually maybe push some of these issues forward in a way
that the BSC could not. But that doesn’t mean that those necessarily be the
only issues that might be overlapping interests and one topic that we had some
discussion about but didn’t end up on this agenda was this whole idea of health
statistics for the 21^st century and there I really feel like one
needs to start thinking about outside the box and what the needs might be, not
so much of what we’re doing today but what might be the needs and given the
resource constraints do we continue doing what we’ve been doing in the past or
this records kind of stuff where we should be moving into the future.

And I think in that area there would be a lot of joint interests and in
fact one of the recommendations or one of the issues that came up in the last
discussion, one of these conference calls, was that if you after you hold these
hearings in September the BSC has its next meeting in January, that it would be
nice to have a presentation of some of these issues that came up here to the
BSC. In part because the BSC can play a role, a lot of these have to do with,
or some of these have to do with the statistics that the National Center for
Health Statistics collects and we’re presently going through a review of all
the data collection programs that NCHS does, so the BSC actually went through a
review on mortality statistics, this week we’re going to discuss fertility,
vital statistics on death records and what’s going on and whether what they’re
doing is adequate, and then we’re going to move into the surveys. So in that
context there might be some interest with this committee as well.

So I think there are potential but it’s not clear that it’s the entire
NCVHS or it’s the entire BSC that might be interested in this joint discussion,
so we’ll see how tomorrow goes but it really was sort of being pushed because
there are I think issues that I think we both have interests.

DR. STEUERLE: Could be quite blunt, this is just a general observation but
it’s not one that probably well enough informed that you could say I’m crazy,
but I sense both our committee and subcommittee, if you want to, and BSC are
really a little, they’re not really on the leading edge of where we should be
heading with respect to the second topic, health statistics for the
21^st century, what are the really big gaps, where should we be
cutting sample sizes is one thing, where do we need time series versus cross
section, what new elements of health care is totally not being measured well.
And again this is well and good but I don’t hear those, not only don’t I hear
those discussions among us, I’m in this trap of not knowing what I don’t know,
but I sense there’s some of that there too but I don’t know how to get a
combined discussion to get at that. I’d hate to get just trapped, I mean this
is my bias, I’d hate to get trapped just in the confidentiality issue which
important as it is is to me a pretty narrow focus.

DR. ELO: I agree with you, I think the reason we chose this is that we
needed to have something that might be of some interest and we needed a topic
of focus, there was not interest in broadening up this, in fact you and I sort
of tried to make this one of the topics for this meeting but there was not this
broad interest on Simon’s part, the staffs really do make it that broad, that
that was going to be too broad.

Now one of the things I don’t think these two committees will ever meet,
I’m not even sure that it makes a lot of sense for the two committees to meet
jointly together, there might be some ideas of subcommittees where there would
be some people from your committee and from that committee to really think
about outside the box which I think that’s where it has to go.

Now in some ways when we get into the reviews of the NCHS programs that’s
what some of that review should be about, I mean it may be that you scratch
some surface you had in the past and think about what you should do in the
future but it’s very hard to make those changes, right, because everybody has
inertia about, nobody wants to give up anything, they just want to start new
things, I mean that’s normal. So I think there are computers(?) to do that and
the reason is it’s not going to be constrained, at least for the short term, so
it may be in that context particularly when we start thinking about what is the
role of NCHS in all of this data collection, somebody challenging, also the BSC
is important. So I can see that not happening in these huge meetings unless
there is somebody who develops an agenda and then brings it up to the meeting
and that could only be a small group. Maybe your committee will do it and then
we’ll bring it to the BSC and the BSC will have to then push NCHS to do more
but I agree, the confidentiality issue is not the most important I think,
ultimately we need to think about how we get better statistics.

DR. STEINWACHS: There was some discussion, I don’t know, Gene, whether you
have probably a copy of it someplace, have you seen this? [Shows book – Health
Statistics Vision for 21^st Century.]

DR. BREEN: If you don’t you should, well, because when you said
21^st century thinking outside the box, this is a vision for an
integrated data system in the United States, a population based data system,
and I’m not sure that needs to be rewritten which is kind of what I thought you
were saying —

DR. ELO: I haven’t read that.

DR. BREEN: — since you haven’t heard of it obviously you’re not talking
about rewriting it, I think implementing the pieces may be what we need to be
—

MS. JACKSON: We will have copies of the summary, the executive summary
tomorrow, we do have that for the whole group, we just didn’t have enough
copies, the Shaping the Health Statistics —

DR. STEINWACHS: Is it downloadable from the web?

MS. JACKSON: Yes it is, it’s on the web, the full document itself, the
issues keep coming up because it’s a natural place to look at for vision like
you’re saying Nancy, but I think for this meeting they need a kind of boots on
the ground something tangible they could get a handle on as an anchor for both
committees, that’s why they started with that.

DR. BREEN: Right, I think that’s right but I think it’s also important
since there’s been quite a lot of work, I mean there were three or four years,
I know Barbara Starfield is very involved in leading this effort, a lot of good
people spent a lot of time thinking about how to put this together and so I
think it should certainly be read, maybe critiqued, but I think yes, the next
step is how to implement it and how to, the pieces, I think it’s important to
read that before moving forward and saying we need to think outside the box
because I think they’ve tried to think outside the box.

The other thing that I wondered, you said that this issue of
confidentiality is very important to NCHS right now and that they’re concerned,
or the states are concerned that NCHS is not conforming to requirements or
whatever —

DR. ELO: State laws basically —

DR. BREEN: Is that because of our desire to geocode and link, I mean is
that where this is coming from?

DR. STEINWACHS: State laws have become more restrictive after September
11^th —

DR. BREEN: I see, so we can release data from the phone company on anybody
but we can’t, don’t let me go there —

DR. ELO: If you want to have data accessible to researchers these are going
to be issues that are going to be preventing us from doing that —

DR. STEINWACHS: This didn’t come up in the data linkages discussion
certainly.

MR. HUNGATE: Let me go outside the box for just a minute, I think that that
report is great but I don’t find it implementable because it still feels to me
like it reflects the past in thinking forward about health statistics. And I
don’t see any integration between measurement of individual health with
population health, I don’t see a scalable system, I don’t see a thinking
pattern that enables the ability to draw in the vast amounts of information
that are going to come out of the genome project, all the things, the explosion
of information is not manageable in classic plays, it’s just not, and so we’re
going to have to move from the old hierarchical systems to what they call
complex adaptive systems where a lot of the management is done in totally
different ways and what’s going on now. And that’s a big change, it’s a change
from four or five year old data or 17 year implementations of new medical
technologies, as AHRQ has shown, to real time performance systems, which is
what you do with an NHII is you move to real time.

DR. BREEN: But of course that’s where you run into confidentiality again.

MR. HUNGATE: But people will learn there are benefits as they see that and
the confidentiality will diminish as people see the benefit and feel it. It’s a
chicken and an egg thing that is a long timeframe but it’s not articulated.

DR. ELO: I think there are lots of short term and longer term problems, the
short term issues are going to be how they can keep doing what they’ve been
doing, and the other thing is how do you figure out how you go from what you’ve
been doing to what’s most innovative, taking advantage of all the potential
data sources that are together. And I think this meeting that you have, that’s
what I would like somebody from this committee then to come and brief the BSC
on that meeting and where you’re going with this because I think that would be
helpful and that’s one way of getting them to think outside what we’re doing
now. But there is this process now that we are going through all these reviews
and some innovative thinking should go to that as well and I think challenge
from you to the BSC also to think about in this review of these programs how we
not totally change them but it’s within this vision or some other vision that
you guys might have in mind that we should not just review what they did but
where they should be moving with it in the next five or ten years. And some of
that pushing tomorrow would be helpful I think.

DR. STEINWACHS: Simon and I had a discussion, an executive committee
discussion about this report came out in 2002 and has I think some very nice
attributes to it but I think the point is made here certainly it needs in a
sense updating in a way and maybe rethinking as well as there’s a question of
are we making any progress against that vision and so one thing for us to
discuss at a future meeting was Dan Friedman and Barbara Starfield were the two
I think major sort of authors of part of this but it was a whole committee
effort, and Dan has served as a consultant too.

And so one possibility if this subcommittee wanted it done would be to hire
Dan really to work with us and it could be for two things, one is trying to
update which is probably about five years ago this really comes out in probably
2001, have made any progress on the key recommendations and elements of the
vision, and then two what I thought you were getting at, Gene, and you too,
Bob, is it’s not static, it’s not just a vision that sits at one point in time
and so what we’re doing in data linkages, what we’re doing in new areas it
seems like it might be a chance to think about would we want to produce an
update report that sort of says what’s not only the status but what is the
change in the way in which we are thinking about some of these issues. So my
feeling was it has sort of a very nice broad conceptual framework but when you
talk about then how do you move it to implementation and what are the emerging
issues that are there, and it may be missing things in that framework too.

DR. ELO: I’m reading through these recommendations and they’re not unlike
some of the things we told them to do in the mortality review, but these are
all sort of very general recommendations, makes data more accessible through
the world wide web, we all believe that’s happening —

DR. STEINWACHS: And the Department has done some things, I mean if you
said, if you wanted to pat somebody on the back there have been some things
done to try and make some things, NCHS has done it, so why don’t you just think
about it and we will I guess tomorrow be distributing to everyone that’s
attending tomorrow the executive summary and if you haven’t had a chance to
read the whole report it’s well worth doing.

DR. STEUERLE: Can I just extend, I said I don’t know what I don’t know but
I do know specific cases where there’s a strong need for data statistic
analysis, analytical data that’s not being done and sometimes it might involve
confidentiality, sometimes it might involve something else, the U.S. health
care sector is as large as I guess the economy of France so starting to say
what do we need in health statistics on U.S. health care is like saying what do
we need on data on France, I mean the number —

DR. STEINWACHS: But in France it’s only wine, right?

DR. STEUERLE: The number of potential items are almost infinite so much so
that they tend to drown us, so we’re going with some general statements on
certain things but let me give you three examples. One of them was the
linkages, so for years I’ve seen that we didn’t do linkages because I see this
in model research, we don’t even link Social Security data with Medicare data,
which would give us a sense on who’s getting what benefits out, by lifetime out
of the system. So it’s just something I see, it wasn’t being done, there wasn’t
much of a confidentiality issue, there was a little bit of a turf issue like
who was supposed to do it, so we actually now are generating a hearing on that.

Another one that I worked on is interestingly enough will generate national
health data on total expenses, there’s no generation, I actually can’t believe
this, there’s no generation on who’s getting the money, like whose wages are
going up, how many new nurses do we have, doctors, medical costs are going up
by ten percent, we should have data on who’s getting the ten percent. It’s sort
of a BEA type function, it’s not a survey function, it’s sort of like piecing
together all the pieces trying to figure out where all that money is going.
That’s something that could be done if HHS decided they want to put three
people to it, it’s not a confidentiality issue. But that’s stuff I know less
about, I’ve read studies about error rates on autopsies and I wonder well
they’re trying to develop these data on how well hospitals operate, could they
use autopsy, because they don’t do the autopsies anymore, but is there
something there.

How about the cost of insurance, doctors are complaining about the cost of
insurance and we have Congress trying to make huge changes in laws there but
are we developing the right data, these are just four things I know about, and
I bet everybody in this room could probably name five or six areas themselves.
And what I worry about is often they’re not being what’s done so you say the
imperative of what we’re already doing is sort of what guides us and I worry
that all these other needs that a lot of us sees, each in our own fields, I’m
sure you see all sorts of things at Children’s Hospital, if I had this dataset
I could really do better. I don’t know that we have any systematic way to think
about how to put those on the table. Now I say we are doing it in little pieces
for linkages and that’s what I’m not sure is going to come out of this meeting
either —

DR. ELO: And I don’t think this meeting is necessary —

DR. STEUERLE: — how to deal with it, it seems to me our committee has got
some function there in trying to think through systematically about that issue.

MR. HUNGATE: I think you’re right, I think there are some structural issues
that are different in health care and reporting for instance then there are in
the financial world where I grew up in a corporation and I was in the
accounting and I reported on what was happening and we had coherence between
the public reporting and what was internal and so that you could self report.
We don’t enjoy that in the practice of medicine, there aren’t things that scale
down so that you can self measure how much health you generate in the
population that you manage. And I think that’s a macro performance measurement
issue that has to come up and bubble up and you get overwhelmed by the detail
but that’s because the structure doesn’t allow the detail to get worked on.

MR. LOCALIO: I don’t think they’re collecting the data because people are
afraid of the results, I mean I’ve recommended collecting data on certain
things for 20 years, I say get serious, get some data, nobody wants to get any
data because they don’t want the results, they want to win without the results.
I’ll be frank, three years ago I started to write part of the recommendation
for this subcommittee’s report on race and ethnicity about access to data,
better access to data on race and ethnicity, wrote it up, it was about 13 pages
long, it went nowhere, it went nowhere, unless the subject matter is acutely
sensitive to somebody, in other words if somebody’s father, mother, wife,
daughter, son gets really sick on a certain disease then we can get all kinds
of data on it, but I’m sorry, if it’s the public good it’s really hard, and you
and I were talking about this at lunch, very hard to get data and I couldn’t
agree with you more but how do you convince people that that’s the case. I have
to tell you in preparation for one of our meetings about six months ago I did a
lot of work on how you get access to data on firearms, you can’t get any data
on firearms, state and local officials are prohibited from collecting data on
firearms, databases have to be purged on who purchases firearms, and it has
nothing to do with anything but the fact that there’s organizations that lobby
to death on firearms.

DR. STEINWACHS: I think we’ve identified the problems —

MR. HUNGATE: There’s also a change where people are talking about
transparency, there are some things that may or may not have legs but they’re
part of the same issue.

DR. ELO: In terms of the meeting tomorrow it may be that it’s decided that
there’s no benefit in these two committees having any connection together, it
may be that there are some people who are interested but both committees are
busy doing their own thing so the question is only where there is mutual
benefits or the, the benefits are greater then the cost of spending time
together, put it in your words, will there be any purpose of doing this. I
don’t know if this is the correct set of topics but felt we needed something
where to start, but I think ultimately even for the people who decide whether,
in certain topics we get more done together then if we did the same things
apart, and I can see that some of the things that you’re going to be doing now
there’s going to be some overlap and spillover from other things that the
committee does.

DR. BREEN: One thing that strikes me that the committee, and I won’t be at
the meeting tomorrow, but the Board of Scientific Counselors can do is to when
there are areas where both groups are supportive is to work together and to
push that agenda from both sides, I think it would strengthen that position
quite a lot.

DR. ELO: I think that’s one reason why the staff thinks that there should
be some connection between the two.

DR. STEINWACHS: Why don’t we wrap up, it is about 6:00 and people have
commitments, and I think we’ve laid out some of the issues and certainly it’s
both looking at targets of opportunities which is part of what we were trying
to do and moving the issues but I think also having a broad sense of potential
directions to the extent we can, it’s great to move at both levels, both the
vision and then looking for targets of opportunity that advance that vision.

And Russ, we’ll look for the weapons data —

[Laughter.]

[Whereupon at 6:05 p.m. the breakout session was adjourned.]