[This Transcript is Unedited]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

Subcommittee on Populations

September 1, 2004

Hubert H. Humphrey Building
Room 325A
200 Independence Avenue, S.W.
Washington, D.C. 20201

Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway, Suite 160
Fairfax, Virginia 22030
(703) 352-0091

TABLE OF CONTENTS

P R O C E E D I N G S  [3:15 p.m.]

Agenda Item:  Call to Order and Introductions – Dr. Mays

DR. MAYS:  Why don’t we get started, and let’s start with
introductions.  Bob, let’s start with you.

MR. HUNGATE:  Bob Hungate, Physician Patient Partnerships for Health
and chair of the Quality Workgroup.

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

MS. HAYNES:  Susan Haynes, science advisor in the Office on Women’s
Health here in HHS and I just passed out to you — [inaudible] — mortality
chart book that just came out today, it’s out and it shows health indicators by
sex and the five racial groups by state with the most recent data that we have.

DR. MAYS:  I think this may be what we had to provide testimony that it
was coming in our meeting in Philadelphia, what’s your name, Kate Brett(?)?

MS. HAYNES:  This is Kate Brett in our project, right, and we actually
have, it’s been on the internet but we actually put it in book form and it
ranks every state for every indicator from one to 50 so rather then ranking the
state as a whole which is what the National Women’s Health Law Center Project
did, I don’t know if you’ve seen that report, we just ranked the indicators so
that in most cases the states have at least one thing they’re okay in.

PARTICIPANT: So there’s no overall ranking —

MS. HAYNES:  There’s no overall ranking but you can sort of tell where
the states are ranked if they have a lot of high scores.

DR. MAYS:  Do you have enough of those that we can hand them out at the
full committee?

MS. HAYNES:  Well, I took some up there, a box up there a minute ago
and gave it, but I don’t know if, I think she has enough for the full committee
to hand out tomorrow.

DR. MAYS:  Gracie, can you make sure that we hand this out to the full
committee?  Thank you.

MS. HAYNES:  And this is a CD-ROM that if you wanted to actually use
the data, the full dataset that’s on there.  But we are getting some press
calls from it today already, from Chicago Tribune and sources because this data
by state is really popular, there’s something to write about in each state,
there’s just a lot of meat and there’s maps in the front for a few indicators
and then as you can see the state ranks.  And for most of the data it’s
three year averages when we can get it, especially for the risk factors so that
we can report more data by racial ethnic groups and that’s why we did it rather
then having single years for the risk factors.  And the mortality data is
three year data as well.  And we were really happy to have partnered with
NCHS on this, putting this out, because it’s hard to get all this data in one
place, calculated the same way, adjusted the same standard, and all that.

DR. MAYS:  Great, congratulations, I think that it’s something that we
had gotten testimony on so we’re happy to see it, and what I’d like to do is to
make sure that we share it tomorrow with the full committee so part of what
we’ll probably ask is if you have enough CD-ROMs also tomorrow to go around, is
that possible or should we —

MS. GREENBERG:  I’m not sure everyone would want a CD-ROM —

MS. HAYNES:  I may not have enough to go around but I’ll give you what
I have.

DR. MAYS:  Well, if you have a little flier that you have a CD-ROM then
we’ll give that to each person with a book.

PARTICIPANT: Or just a website so that people can look it up when it
gets put on because that’s the most portable of all.

MS. GREENBERG:  It looks like I should go back to the state of my
birth.

MR. HITCHCOCK:  Dale Hitchcock, staff to the Subcommittee on
Populations, I’m from ASPE.

DR. VIGILANTE:  Hi, Kevin Vigilante, I’m with Booz-Allen Hamilton,
actually I’m from Rhode Island and I was very absorbed in the Rhode Island
data.

MS. LUCAS:  Jacqueline Lucas, National Center for Health Statistics,
Division of Health Interview Statistics.

MS. POKER:  Anna Poker from AHRQ, lead staff for the Quality Workgroup
and staff for the NHII.

MS. PAISANO:  Edna Paisano from Indian Health Service.

DR. KENNEDY:  Cille Kennedy from ASPE.

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

DR. MAYS:  Vickie Mays.

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

DR. EDINGER:  Stan Edinger, AHRQ.

DR. MAYS:  Okay, and Russell, just say your name.

MR. LOCALIO:  I’m Russell Localio from University of Pennsylvania and
I’m a member of the subcommittee.

PARTICIPANT: Anyone on the phone?

MS. GRANT(?):  This is Marian Grant from the — [inaudible] —

DR. MAYS:  Welcome, anybody else?  Okay, thanks Marian.

Okay, we’re going to switch the agenda around just a little bit because I
want to accommodate some, we have people who want to multitask here so I want
to accommodate that.  So we’re going to actually move the discussion of
the process for the population report up as the first item and we’ve asked
Jackie and unfortunately I guess we couldn’t get Jennifer here today but we’ve
asked them to be here so that we could talk about the process.  And then
the next that we’ll follow that with is actually to talk about the discussion
of the candidate recommendations from quality, what we’ll actually do is
discuss the process and I know that Bob wants to go to the meeting that starts
at 4:30 and I think you’re also going to that.  So we’ll make those
switches so that you can do it and since we don’t have Don Steinwachs who will
talk about the mental health stuff but we’ll kind of put that as our last
agenda item —

MS. GREENBERG:  And he was not able to participate by phone I guess?

Agenda Item:  Process for the Population
Report – Dr. Mays

DR. MAYS:  No.  In talking about the Population Report let me tell
you where we are, what you’ve done, and what needs to be done, and a decision
that we need to make.  And Debbie by the time I end up with this, and you
might want to start this now, I’m going to ask you to take us backwards, I want
you to tell me if the meeting is whatever, November, about when you’re going to
send it out and about when we should have these drafts ready to go so that I
can get people to kind of seriously see the short timeline there is.

MS. JACKSON:  [Off microphone.]

DR. MAYS:  So when we get to the end —

MS. GREENBERG:  We’re still in the first part of September, that’s the
good thing.

DR. MAYS:  Good news will be how much work we have to do in the time we
have to do it.  Suzanne, can you introduce yourself?

DR. HEURTIN-ROBERTS:  I’m Suzanne Heurtin-Roberts and I’ve been
wandering around the building looking for this meeting, I thought we were up on
the fourth floor, then I thought the main meeting was up on the 8th
floor, I’m from the National Cancer Institute, I’m befuddled but I’ll regroup.

MS. GREENBERG:  Was the agenda emailed to you?

DR. HEURTIN-ROBERTS:  It was but I don’t think the room was on the
agenda.

DR. MAYS:  It wasn’t because I also told somebody else about coming and
there was no, the room wasn’t on it either.

We also have somebody that just arrived, Dr. Chapa would you like to
introduce yourself?

DR. CHAPA:  Hi, I’m Teresa Chapa from the Office of Minority Health —
[inaudible] —

DR. MAYS:  Okay, here’s where we are with the Population Report.
We put together a small subcommittee, the subcommittee got the last draft of
the report which Susan Canaan helped to reorganize.  We set out a set of
instructions and different people, everybody was really good, thank you
everybody that’s on the small group because you actually did all the things I
asked you to do, so I’m very thrilled.  But we have to make two major
decisions, one is we have to bring the comment period to a close and that is if
there are any more comments that you have about everything except what we’re
calling the strategies it needs to be in there now.  Part of what I keep
getting is that people kind of throw a comment out and it’s like it really
needs to be that you take that comment and either make the change or that you
put before the group exactly what the issue is.  So that’s my biggest
concern at this point is that if people really do have comments we are happy to
integrate them, but if you have thoughts, if you think that something is a
problem, we’re at a point now where the problem needs to be resolved.

I know that we wanted to beef up the section for example on geocoding and
that was done.  We wanted to beef up the section on privacy and
confidentiality, that’s done.  So I think all of the outstanding areas
that we thought needed —

MS. GREENBERG:  I was going to say, where is Eugene, and he just walked
in —

DR. MAYS:  I just announced his issue.  Join us and introduce
yourselves and we’ll keep going.  Eugene I just talked about geocoding so
that’s why everybody looked to see where you were.

DR. LENGERICH:  I’m Gene Lengerich from Penn State University and
member of the subcommittee.

DR. MAYS:  Identify with geocoding?

DR. STEUERLE: Gene Steuerle, I’m with The Urban Institute.

DR. MAYS:  Welcome.  So I think that all of the issues that we as
a group have talked about are in the report, now if there’s anything that’s
outstanding, any other changes that need to be made, I’m setting a date and
what you have to do is to really do it, or you have to let it go, that’s the
choice here.  If you say you’re too busy to correct it and it’s not an
egregious error then you have to let it go.  So that’s the message,
Debbie, can I ask you because I want to do it backwards now so that we know how
much time we have to work on this report.  The meeting is —

MS. JACKSON:  November 3 —

MS. GREENBERG:  Actually it’s 4 and 5 —

MS. JACKSON:  So the first week in November, counting back —

DR. MAYS:  The agenda books will go out when?  Approximately?

MS. JACKSON:  Well, the agenda books will go out about the last week in
October in preparation for that so the materials need to be in the book by
October 18th, 19th,   20th we start
compiling material for the book.  That’s three weeks out.

DR. MAYS:  So we should be finished by October, let’s shoot for, I’m
not looking at a calendar but let’s shoot for, we should be finished by October
18th and finished means that it has to get, can we back up again, at
what point would we like it to go to the executive committee?

MS. JACKSON:  The first part of October would be ideal to give them a
week to look at a report.  We’ve given the committees three or four days
sometimes to look at letters, but looking at a report for the first time they
really need a week and a half.

DR. MAYS:  So this is the most generous deadlines of all, what we would
say is we have a month to finish this report.  So if there are any
outstanding comments, and I think what we should do is send an email so that I
can make sure that everybody who’s not here is clear that if there are any
additional concerns, issues, anything, you have, what’s today’s date, September
1st, and then there’s a holiday, what’s the week after that, it
would be, what’s a week from Monday —

MS. GREENBERG:  The 6th so the 13th.

DR. MAYS:  So you have that Friday before so it’s like the
10th, so at the latest it’s September 10th.  Hearing
that after that I’m going to be really clear that then the ability to pull us
off track with major concerns is going to be a problem.

MS. GREENBERG:  Now if you’re giving people until the 10th
and are we still planning to have a writer?

DR. MAYS:  Yes, I’m going to discuss that but I’m just trying now to
make sure that —

MS. GREENBERG:  If you want to get something to the executive
subcommittee by the first week in October, whatever will appear as a draft
report obviously has to be reviewed by the subcommittee —

DR. MAYS:  I’m willing to cut the timeline short, I had gotten comments
from almost everyone, the only I think areas that I think we still probably
need to deal with is any accuracy issues in terms of NCHS, so I think, and I’ve
gotten a draft from Jackie and I think maybe probably Jackie and Jennifer are
at this, I mean we’re probably at the last stage for Jackie and Jennifer to
make comments.  I think everybody else really has so I could cut that
timeline back but I just understand that Jennifer is out.  When Jennifer
due back?

MS. JACKSON:  She’s on leave until the 2nd.

DR. MAYS:  Okay, she’s on leave until the 2nd —

MS. GREENBERG:  Which is tomorrow.

MS. JACKSON:  Maybe through the 2nd —

DR. MAYS:  So my suggestion would be Jackie do you think it’s possible
for you to be able to, I’m happy to send an email also, do you think it’s
possible for you to have some time with Jennifer when she first comes back?

MS. LUCAS:  I’m more then willing to make the time, I think it’s going
to be depending on her schedule, but I’ll certainly make the effort.

DR. MAYS:  Okay, alright, I’ll also send an email because I know
Jennifer has some things she wants to comment on but we just need her time wise
to do it, so if she’ll do it then it’s fine but she may not also be aware and I
think that that’s what would be good, she may not be aware of the work that
Jackie has done because Jackie sent it to me so it may be useful for her and
Jackie to actually talk and then I think that does take care of —

MS. GREENBERG:  So you’ve gotten comments from Jackie —

DR. MAYS:  Yes.

MS. GREENBERG:  And that’s addressed some areas where there maybe were
inaccuracies or whatever.

MS. LUCAS:  See there were some places where I said I was going to give
you the references and I wasn’t sure that I’d given you all of them so I need
to backtrack and —

DR. MAYS:  Yeah, that kind of stuff we’ll get but I just want to make
sure that if the two of them I think coordinate with each other then we
actually are fine.

 

MS. GREENBERG:  Well a week from today would be nice to have any
comments, right?

DR. MAYS:  I’m fine with that, we’re just talking about Jennifer’s time
so I’m fine with it.  In the interim what I need to do and what I’d like
to do again Jackie is to have you as one of the primary people to work with on
this because I think in terms of where there are holes or where there’s a
reference I think you’re the most likely to be able to quite quickly to be able
to find those things, and you’ve gone through the report, did a great job, so I
would like to work with you on pulling those together because I will have
comments in a couple of ways and I think we can probably wrap that up.

MS. LUCAS:  Okay, so you’re going to send Jennifer an email?

DR. MAYS:  Yes, I will send Jennifer an email, I’ll try to actually
send Jennifer an email tonight so that she has it when she gets back, telling
her the timeframe and she can then respond.

MS. LUCAS:  What I’ll do is when I email her I’ll send her the version
that I inputted my comments in so that she can see them and —

DR. MAYS:  Then I’ll email her and give her the choice of I can send
her every comment that I have gotten so she can see what the changes will be or
she can just work with it.

The next thing is Nancy, Nancy’s not here —

DR. HEURTIN-ROBERTS:  I got an email saying she was getting ready to
take the shuttle but I think I took the shuttle before she did —

DR. MAYS:  There’s a shuttle?

DR. HEURTIN-ROBERTS:  There’s a shuttle that takes us from our building
to the Metro.

DR. MAYS:  Because I was going to work with her about writing up the
scope of work because she’s actually worked with this before so I thought that
that would be useful.

MS. GREENBERG:  This is a scope of work for the writer?

DR. MAYS:  Yes.

MS. GREENBERG:  Whom we want to engage like in the next week?

DR. MAYS:  The writer has already said she’s waiting and willing, I’ve
kept her apprised of it now, how quickly you can get a contract to her, she’s
willing to work —

MS. GREENBERG:  But we obviously have to negotiate a rate with her, we
can do it through, we can engage her through our logistical contractor, I mean
we don’t have to do a separate contract with her, that would be sometime in
2005 if that were the case.  But we can engage her through Magna(?) but we
need a scope of work obviously in order for her to give us a price and us to
agree to it and as we discussed in the past we really need that because I don’t
think she’s going to want to start working on it without any guarantee that
we’re going to pay her.

DR. MAYS:  I agree.  Nancy, welcome.

DR. BREEN:  Thank you, I’m sorry I’m late.

DR. MAYS:  That’s okay, can you introduce yourself?

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

DR. MAYS:  And will you help me with the outline of the scope of work
for the writer?

DR. BREEN:  Sure, I’d be happy to do that.

MS. GREENBERG:  This week?

DR. BREEN:  I think we can do it this week, are you talking about Ann
Roger, am I allowed to say a name?  I mean it was someone, I think maybe
you’re talking about someone that we use pretty extensively in my division at
the National Cancer Institute and we’ve been extremely happy with her so
there’s a scope of work there for her and I think we can write something up
pretty easily.

MS. GREENBERG:  And then you can also tell us whether, I mean what her
rate, if you’ve already worked with her then I would assume you’ve already
negotiated the rate with her, that would be a place for us to start.

DR. BREEN:  Sure.

MS. GREENBERG:  Which is good, as opposed to someone who hasn’t worked
with us —

DR. MAYS:  That’s why I thought Nancy would be —

MS. GREENBERG:  So this is possible but we’ve got to move it along.

MR. LOCALIO:  I just wanted to make sure I and everyone understands the
timeline and what we’re reacting to.  From what you said on September
10th we have to have to you all —

MS. GREENBERG:  We’ve moved that up to the 8th.

MR. LOCALIO:  Excuse me, September 8th, September
8th we have to have to you all edits.

DR. MAYS:  Well, I have them from all of you with the exception of we
just need to get Jennifer involved so I do have them.

MS. GREENBERG:  The one person you’re really waiting on is Jennifer,
you’ve got things from everybody else.

MR. LOCALIO:  What are we reacting to?  In other words between
today and the 8th, which is not, we don’t have a document that we’re
reacting to?

DR. MAYS:  There’s the document we had before but let me tell you what
the piece of work is for you to think about but I think again, the writer is
better to help us in this.  In your folder is an email from Susan
Queen.  One of the things that we do have to do something about is the
fact we have 69 strategies, they have been reorganized in the sense of the
overarching recommendations, part of the task in this was, Susan Queen was the
person that was actually tasked to comment on them whether or not there was a
different strategy, and these are her comments.  I think probably the most
efficient next step will be to work with the writer.

MR. LOCALIO:  I have one other question, somebody kindly left on my
plate —

DR. MAYS:  Oh, that’s me, I gave that to you.

MR. LOCALIO:  Oh, okay, thank you.  And to what extent do you want
me to incorporate anything I can find out about these materials into anything
that I provided you in the past?

DR. MAYS:  That’s for your November activity with —

MR. LOCALIO:  Thank you.

DR. MAYS:  We’re not being mysterious, I just gave him some stuff about
privacy and confidentiality.

So Susan has given us some suggestions about how to approach the strategies,
I think that rather then us doing this it would be better for us to receive a
streamlined set of strategies that the small group of individuals can work on
with her and then get that out to the broader committee as opposed to doing it
the other way because I don’t think we efficiently would be able to do that.

MS. GREENBERG:  You’re getting a streamlined set of strategies from the
writer?

DR. MAYS:  Yes, based on the fact that we actually have input on
approaches to do that, like for example Edna is going to look at them in terms
of some suggestions that Susan has made so we do actually have some suggestions
about how to do this.  Also having some of our federal partners involved
there are some of these strategies now which can get cut, when I say cut
meaning some of this stuff has been done, some of this is not as neatly lined
up with the department’s mission anymore, and some of this we’ve sent letters
off.  So if it’s something in which we’ve done it, we’ve sent letters
already, we probably are going to pull them out of this, so I think that that
will be very helpful.

Okay, any other questions?  I think that this is best if I send an
email and outline the whole process in the email, and then if you see any holes
please respond to it.  I find it very hard at the meeting to do anything
in depth because we really have a short amount of time so I’ve started to try
and do these things into task groups and let people who then get geared up stay
focused on doing it.

MS. LUCAS:  I just wanted to make sure there’s no more recent draft
then the one we had from April 20th —

DR. MAYS:  No, I have the different comments but there’s no, exactly,
I’m trying to make sure before I keep sending out drafts out and everybody
keeps responding to different drafts that I get one set of comments from
everybody that’s agreed upon and then we sit down and make the decisions about
what’s in and what’s out, so that’s why I didn’t do yet another iteration.

Any questions, comments?  Okay, thank you, thank you for the deadlines.

Agenda Item:  Discussion of Candidate
Recommendations from Quality – Dr. Mays, Mr. Hungate, and Ms. Poker

DR. MAYS:  Okay, let’s move up the discussion about quality.  For
those of you who have been, which meeting did we do it?  Was it
June?  The June meeting the quality report was passed?  I don’t know
anymore, it seems like it was a long time ago.

MR. HUNGATE:  I think it was before that.  One of the recent
meetings.

DR. MAYS:  One of the recent meetings as you’re well aware of Quality
came forth with its report —

MS. GREENBERG:  It must have been March because we had the hearing
right after the June meeting so obviously the report had already come out.

DR. MAYS:  Okay, it was in March, yes, because we even discussed these
at another point, you’re right, it was in March the Quality group presented a
report to the full committee.  Quality has always worked, while it’s a
subgroup here Quality has always done its work through the full committee and
so what that reflected was that in the full committee there, when you looked at
the recommendations, there are different recommendations that seem to apply
more or less to the subcommittees.

There are some candidate recommendations that are really aligned with
population, there are four of them, Bob?

MR. HUNGATE:  Four I think are most aligned, there are really five that
are aligned but I think one of them is subsumed in your other activities
already anyhow so it’s not —

DR. MAYS:  Do you want to talk a bit about the recommendations just so
that people have some idea?

MR. HUNGATE:  Sure.  There were two recommendations, there are
five that I think directly relate to the Populations Subcommittee.  The
first two relate to adequate benchmarking data for states and metropolitan
areas on racial and ethnic subpopulations and that’s really what you’ve been
dealing with before so I don’t think we need to talk about that one in the
context of this report because I think you’re already doing that so it’s just
kind of reinforcing that.

The second one is standards survey items.  It says standardized
currently inconsistent items that are used to report the same measure of
quality and this tends to be survey.  The Quality Workgroup is currently
conducting hearings around the first eight recommendations, which primarily
relate to administrative information and health care institutions and the
recommendations, or candidate recommendations 11, 12, and 13 are all similar to
that in that they relate to the administrative data that is taken on people
during encounters with the health care system or enrollment in plans.

DR. MAYS:  Do you want to just, I realize we have a couple of new
people here —

MR. HUNGATE:  I’ll quickly read those three, because I think those are
the ones where the coordination/ cooperation between the two organizations is
most valid and most useful.  And those are, number 11 was data on race and
ethnicity of all enrollees, modify existing mechanisms for reporting race and
ethnicity of subscribers and dependents on the HIPAA enrollment
transaction.  Since it’s a transaction it’s a HIPAA transaction that also
involves standards and security content wise, and that’s true of the others as
well.

Recommendation number 12 is investigate how best to capture race and
ethnicity on a standard provider transaction.  13 is modify existing
mechanisms for reporting the primary language of both subscribers and
dependents on the HIPAA enrollment transaction.

These recommendations came out of six years of testimony, none of which I
personally heard, which has caused me some discomfort in trying to create a
report that was an accurate reflection of what passed by.  The thing that
has also happened is things have changed a little bit over time and so these
recommendations are candidate recommendations as opposed to full
recommendations on the part of the committee.  Those things most involving
Populations I think necessarily must have the Populations,  prioritization
within your own activities, as to what should be worked on and what
shouldn’t.  To me that’s my sense of the process, that what Quality
Workgroup has done is helped to focus here are some content things that have
been sitting around percolating and to ask the question well, what do you want
to do.

DR. MAYS:  The recommendations when they went forth was with the notion
that some of them would be brought for joint work between the particular
subcommittee, of the five that were identified as being most relevant to us the
first two, we’ve had enough testimony and we’re writing this Report on
Populations that I think that that’s something to share with you as opposed to
the need for hearings.  But understand that the next three that he talked
about, the last three that he talked about, those are somewhat complicated,
Marjorie is probably the best person at the table in the sense of longevity
with some of these issues about how long ago has this come up in terms of
trying to get race and ethnicity and should it be collected at which point in
the encounter, should it be required, I mean so there’s a number of issues that
come up.  And this is where I think Populations has a contribution to make
but it should not do this alone, this is when it is Populations, Quality, and
to some extent Standards involved.

So what I want to do is to talk about the process, and I’m going to suggest
a process and then I think we should discuss it, because tomorrow Bob has
Quality and Quality needs to discuss it.  I think first that this is a
three subcommittee activity, it doesn’t mean that it has to have the full three
subcommittees but I think in terms of holding hearings on this issue it would
be helpful if there is representation from Populations, Quality, and
Standards.

The question for Populations should be the following, what is it that we
would like to achieve, is there any specific population, organization, etc.,
that we have specific concerns about from kind of a populations side, what are
the population issues, are there specific populations that the collection of
this data would be either more difficult for, at risk, I mean those are the
kinds of things I think we should be thinking about in this.  And who do
we think should be heard from on this issue so that in the context of
organizing a hearing who do we want to make sure is contacted to provide
testimony at the hearing.

So I think those are our questions that we would need to work on, Bob, and
the suggestion would be that the hearing that we would have would be at least
from the group’s perspective, include Quality as well as Standards.
Marjorie?

MS. GREENBERG:  The approach that the Quality Workgroup has taken with
the first eight or nine, whatever, was to have one hearing to kind of validate
or explore the case, the business case for it or the value statement of why
each of those eight recommendations, whether and why they should be
pursued.  And now they’re having a second hearing mid-month with the
standards people to try to find out well, if we wanted to go ahead with one or
more of these as a firm recommendation how could your standard accommodate
them.

Now is it necessary to still, I mean has the work that you’ve all done and
is going to be in your report enough to make the value statement, or the
case?  I mean because one, I guess even your testimony is a little bit
old, I mean one of the arguments about some of the other recommendations was
well, this testimony was taken a number of years ago and we need to update
it.  Or is the purpose of this joint hearing to do what we’re going to be
doing on the 14th which is to explore with the standards groups how
this could be accomplished.  I mean given the recent recommendations from
the IOM, the report you’re going to be making, etc., do we need to have more
testimony on what the value statement is, or are we now, is there enough out
there now to really instead be engaging the National Uniform Billing Committee,
the National Uniform Claim Committee, the HL7, X12, whatever, the people who
are coming on the 14th to talk about the first eight on well, is
this feasible or what are the problems with doing this from the point of view
of implementation.

DR. MAYS:  I’m going to comment and then I’m going to open it up.
I would say that the business case is made in the sense of the IOM and the
sense that the health plans have gone ahead, but what we don’t know is the
acceptability of asking these questions at what point in the process.  I
think for racial and ethnic minorities if you ask them when they’re first
enrolling in a plan the belief will be that there might be
discrimination.  I think if you ask people at other points to fill it out
what’s the extent to which maybe they will not fill it out.  I mean I
think what we don’t know is the best practice of how to gather this data, or
the education necessities that are there in order to have people participate so
that we get the data at a high percentage.

We can learn that from talking to the health plans right now I think, and we
also don’t know if there are, what we don’t know I think is also what to do
with mixed race data —

MS. GREENBERG:  With what?

DR. MAYS:  Mixed race data, multi-race data, that’s the other thing
once it’s collected.  I mean there’s some, and I don’t know what’s going
to happen to the health plans but some people feel like well once the data is
collected are they liable, are there certain ways in which the practice should
be different.  I mean I think there’s some interesting issues here that I
don’t think that we have collected data on —

MS. GREENBERG:  Depending on what the questions and the issues are that
will obviously drive whom you’re going to bring in.

DR. MAYS:  Right.  Let me let others comment on what they think
would be necessary to gather at this point in time in order to have the outcome
be that we could end up with these standards being put into place.

DR. BREEN:  I don’t have anything to add but I would like to reinforce
what Vickie suggested because I know with the SEER program, the cancer registry
program that NCI runs, there’s been concerns on how to collect these data and
there’s been a diminution in the collect of those data, especially in
California when they were having the Proposition, so I know Brenda who runs
that program, Brenda Edwards, would very much like to know, to give some
instruction to people on what would be best practices because they’re feeling
like they certainly don’t want to offend anybody and they certainly want to
deliver health care and there’s certain things that they want to do and
accomplish and so they’re going to need to do this in a way that doesn’t offend
people or send them away or otherwise discourage them.  So I think that
question is key.

MS. GREENBERG:  Well I know several years ago when we had the rather
substantial hearing on this issue Janette Balls I remember in particular gave
very good testimony about what type of educational and other processes the
organizations she was with in Minneapolis followed in order to collect the
information in a way that was acceptable and resulted in good quality
data.  Since then more health plans have tried, have seen the value of
doing this, or have taken the step to try to do it so I think updating that and
hearing from those groups would be very good.  And that is, I don’t know
whether that could be done, well, that could be done probably in the same
hearing that you also have the standards groups but it seems to be general
agreement that sort of the value statement does not need to be made anymore
which I would agree.

MR. HUNGATE:  Comment, I’m not sure whether the specific content of
these candidate recommendations is the same as they would now be framed
listening to your discussion, I can’t remember the term she used for cultural
competence, things about economic situation of the individual, there are some
things that may be important in risk adjustment from a qualitative measurement
standpoint that also appear in this same content, so I’m not sure whether we
correctly framed the candidate recommendations, whether they encompass all the
issues that should be involved in population determinations.  That’s just
an uncertainty on my part.

The other piece of that is the contrast between central collection through
survey as opposed to being able to aggregate from administrative data and have
the information be comparable, what are the strategies involved, what are the
relative importances, how much is the strategy to stimulate health plans to do
their own data collection in ways that let them recapitulate on the
measurements such as are in here for their own population, to say how does my
population compare to a state population, I’m just using this as an
example.  And so that’s partly a strategic choice and I don’t know how
well we’ve talked through and articulated that part of it.  You know that
better then I, now maybe I’m just jumping into the deep lake and I should
forget it but —

MS. GREENBERG:  Well, obviously the Quality group has to agree whether
they still want these candidate recommendations to be vetted or they want to
change them, or they want to expand them and say these are the ones that were
in the report but we also have these other issues.  If you think it’s
going to offend people to ask them their race and ethnicity wait until you ask
them their income, I mean there’s just so much you can do in the administrative
environment —

DR. MAYS:  Especially if their income has anything to do with any kind
of services, they might minimize it in order to, because you think later that
it might impact services, so even in the surveys to try and get people’s income
is —

MS. GREENBERG:  I remember a friend of mine in college who didn’t come
from a poor family but she told me they always wore old clothes when they went
to the dentist but anyway, it always stayed with me.  But of course if
you’re going to use it for purposes of care, I mean in a positive way for
purposes of care, or use it for purposes of risk adjustment or whatever, it has
to be on those people, you can’t use survey data from some national or state
source.

MR. HUNGATE:  If you want culturally sensitive care you’ve got to have
the culturally important information some place, and I think it drives you into
the administrative corner sometimes, at least that’s my sense.  Now maybe
it’s enrollment, maybe it’s not plain —

MS. GREENBERG:  But then you have the issue that it’s raised about
enrollment.  So I think a hearing around these issues would be useful —

DR. MAYS:  I think there needs to be a discussion among the groups
before we go to the level of a hearing, I was just going to say so I think a
hearing is good but I think that for example the more you talked the more
nervous I got and I mean this is like take me away from being the chair and put
me back to being a minority in the health care system, I don’t even know if I
want to answer all the things you just said because I’m then afraid of the kind
of reports that might be written and they end up stigmatizing, we don’t do
this, I mean that’s what has happened in HIV and so you now have a whole field
of stigma, it’s just not the disease but it began to classify people around
their behaviors and I could see the same thing happen in health care.

MR. HUNGATE:  I think that’s a limitation of claims data too because
claims data is very directed toward the process of delivering care.

DR. MAYS:  But see I think we’d have to think about if you collect the
data maybe there needs to be some boundaries or something about how you can and
can’t use it.  Eugene, Anna, Nancy, no, I’ll turn to I saw over here, did
you have your hand up?  Okay, then Nancy, I’m sorry, I just realized I was
going down one side.  Did you have your hand up?

DR. VIGILANTE:  Tentatively.

DR. LENGERICH:  This is a question mostly I think for Bob or for the
Quality Workgroup and that is a couple of your recommendations, candidate
recommendations 11 and 12 had to do with enrollment of provider
transaction.  I guess the scope of that universe needs to be somehow
defined particularly if you think about a hearing and who you would bring
in.  I guess one major division might be private versus public providers,
Medicare, Medicaid —

DR. BREEN:  Insurance you mean, insurance coverage?

DR. LENGERICH:  By type of —

DR. BREEN:  You said providers, do you mean insurance coverage?

DR. LENGERICH:  Insurance coverage, yeah.  So would you include
all groups?  Would that be the universe you would be seeking to get
information from and be able to make recommendations?

MR. HUNGATE:  That’s been the approach so far.

MS. GREENBERG:  John just returned and I think it’s worth asking him
because of his role with the IOM Committee, etc., whether, the question has
now, is on the table about a possible hearing related to the recommendations
about collecting race and ethnicity and primary language in enrollment or, now
the question is about all the other issues that you might want to know in order
to relate it to cultural competence and socioeconomic factors and all of
that.  Do you feel, I mean I know there was a recommendation in the IOM
and made some recommendations and there seems to as we talked at the executive
subcommittee we’ve made some progress in plans recognizing the value of this
and even standards development organizations maybe recognizing they need some
functionality to collect it.  But do you think it makes sense to do a
hearing just around those topics, race, ethnicity and language?  Or should
this be expanded?  Because once it’s expanded I mean you’re really getting
into much less chartered territory.

DR. LUMPKIN:  Well, there’s been a couple of development, there was the
survey that was released by AHIP, American Health Insurance Plans, on
collections and the survey showed that half of the plans are collecting race
and ethnicity data in at least one of the product lines.  There is I think
continuous momentum for that which is not reflected in the SDO related to the
837 so the question is is how can we sort of kick things over.  I know
that United Health Plans is very interested in pushing the issue, particularly
Reed Tuckson(?) —

MS. GREENBERG:  Race ethnicity.

DR. LUMPKIN:  Race and ethnicity.

MS. GREENBERG:  And language or just —

DR. LUMPKIN:  Not language, I haven’t really heard much discussion
about language.

DR. MAYS:  See California language is a big issue and what you’re
seeing I think particularly in terms of LA CARE and a couple of others, it’s
very big on their agenda.

MS. GREENBERG:  But that’s already in here, the question I think is do
we try to go ahead with a theory on what’s in here or get into some of these
other areas.

DR. MAYS:  Well, the other area is —

MR. HUNGATE:  I was the one that suggested broadening the scope a
little bit and I’m not sure that’s appropriate and I’m quite willing to back
off that because I hear real complications coming through —

DR. MAYS:  Well, let me just say I think the issue is we have sent
forth things to the Secretary saying socioeconomic position is important.
You have I think also said socioeconomic position is important.  What
we’ve done is we —

MR. HUNGATE:  Not in here, not in here.

DR. MAYS:  No, but before that, didn’t Quality have, maybe —

MS. GREENBERG:  Quality was never —

DR. MAYS:  Maybe it’s in the 21st Century —

DR. LUMPKIN:  What we have tried to say that even with everything
that’s going on is it important enough to put it on the transaction code.

DR. MAYS:  Well what to put on the transaction code?  Because I
think what we’ve done is when we bring up SES what we do, I mean socioeconomic
position, we always focus on income, and what we’re finding is in this
environment things like how much education does a person have, can we establish
their literacy level, I mean there are some other things which tie directly
into what you would need to do.  Can I write a prescription, how do I
write the prescription, I mean that, there’s a lot of discussion about those
kinds of issues at least in California.

MS. GREENBERG:  There’s a recommendation going back to 1992, it was
brought forward in the core data elements recommendations, so going back to
1996 recommending education, level of education, but it never went anywhere, I
mean it went to the department but it never went anywhere other then
that.  That’s the only, that wasn’t from the Quality, I mean that was from
the whole committee, that was before we even had a Quality Workgroup.
There has been a recommendation and it hasn’t been revisited and I don’t think
it was really —

MR. HUNGATE:  It wasn’t revisited here.

MS. GREENBERG:  It wasn’t revisited by Quality.

MR. HUNGATE:  I was just listening to the other discussion and say well
gee, I wonder we’ve framed it alright.

DR. MAYS:  But what I don’t’ want to do is to sink this because it’s
like race, we have a chance I think for race and ethnicity and I think there’s
a lot of momentum in different places and I think if we are strategic it can
work.  I don’t want to sink it though by like getting so broad that in the
same, it may be that we need to do step by step and also it means that we can
do it more timely because the race data, we know already who to call in, we
know that there are health plans to call in, we know for example that the IOM,
the case has been made —

MS. GREENBERG:  And states are collecting it too so there’s some
functionality already in the transactions, I mean nobody is collecting this
other stuff in administrator data.

DR. MAYS:  It might be useful to think about let’s start there, let’s
let this other stuff come up in the context of the hearing, let’s wrap up the
race piece, and then move to the next.  We might be able to do language
even with race.

MS. GREENBERG:  Yeah, I think you could do language, I think you could
do language.

DR. MAYS:  We have a visitor.

D. CHAPA:  I think language would be exceedingly helpful and it’s not
as intrusive and people wouldn’t be so afraid, putting income, people sometimes
don’t want, I think there’s a special — [inaudible] — earnings and so forth
but language is a very important factor and a prime discussion for those
practitioners — particularly under Title Seven.

DR. LUMPKIN:  I think that obviously supporting the recommendations
from our IOM committee, I think language and socioeconomic position, are
important indicators and ought to be collected, the question is is can we make
the business case like we can for race and ethnicity data, and that’s really
where the challenge is and that’s really where we reach the roadblock in
dealing with the standard development organizations, which they’re all about
business, the business case, it’s not about what’s going to be nice to
collect.  And I think that we nee to clearly segment our recommendations
so that they can be addressed by the SDO one at a time and make the case for
each one of them on their own merit rather then trying to pull them all
together.

DR. MAYS:  Okay, let me get the people, Anna, you still want to
comment?

MS. POKER:  Yeah, I’m just trying to remember what I wanted to comment
about.  What I wanted to talk, I was so excited when you asked the first
question what would we like to achieve because I think that would probably be
the first question to ask here because if we know what we ant to achieve we’d
know when to ask the questions.  And hopefully if we can explain to the
people why we’re asking these questions we could get more honest feedback from
them.  And I mean that maybe in a naïve sense but also in a very true
genuine sense, what is it that we want from this data, what do we want to
accomplish from it.  And once we kind of really identify that I think the
rest might flow a little bit.

DR. MAYS:  The reason I think that’s so important is because I think
once we tell people we want to collect that data my biggest concern is that
their expectations of what can come from it may not be met and then you’re
going to get people feeling like well you asked me my race, don’t you have
something special for me now, so I think it’s important.  Nancy?

DR. BREEN:  What I was going to say when I raised my hand was that I
thought we should also collect language because I thought race and ethnicity
was what Bob had mentioned that his committee had recommended —

MR. HUNGATE:  And language.

DR. BREEN:  Oh, you did recommend language too?

MS. GREENBERG:  Those two.

DR. BREEN:  But since then with this conversation I think it is
important to collect some measure of socioeconomic position because what’s
happened historically in this country is that if you don’t collect any measure
of socioeconomic position an enormous amount of weight goes on to race and
racial differences and it tends to confuse the issue more then explains it I
think.  And so I think from that point of view it’s important to get some
measure of socioeconomic position.  I think much as I’d like to see income
I don’t think it’s a very feasible measure, I think it’s going to be tough to
get from people and I think not only may people not be completely honest about
their income but I don’t think people track their income in the way that we’d
like to have on these surveys, I don’t think they could just have that off the
top of their heads.

But I thought Vickie you made quite a good case for collecting education
including a business case for collecting education because if people who are
providing clinical services to people know more about the educational levels
and background of their patients then they’re going to be able to provide more
appropriate services to them.  So I also like the idea of collecting these
bits of information, or presenting them to whoever is going to make the
decision separately but I think I would go for education as a socioeconomic
position measure but I really would hope we could get socioeconomic position as
well as race and ethnicity and language.

And with those three things coming out of some sort of standardized way of
collecting those and that’s where quality and standards would come in, some
kind of standardized way to collect all those things in our claims data that
comes out of a million different places in the United States, we would be so
much further ahead in terms of having a dataset that we could do something with
then we are now today but it would be fabulous.

DR. VIGILANTE:  Yeah, actually I was going to say very much what Nancy
said, I think that highest level of educational attainment is a specific metric
that we should collect, I think it’s very important to collect socioeconomic
position but recognizing the difficulties in collecting income and wealth data
and getting it reliably is very problematic but level of educational attainment
tracks very well to that and it also covers circumstances when people are
retired and no longer have an income or one partner doesn’t go to work anymore
but may be a college grade, it gives you a better indication in a lot of ways
of where people are in their socioeconomic position, as a surrogate measure.

The other thing is that the health disparity populations and the educational
disparity populations map so closely and if you, and there seems to be, there
is data emerging that actually education attainment may mediate its effects on
health status, not just by the income effect but they may be a separate
educational factor and so paradoxically it may be an educational
intervention, better reading, writing, graduated from high school and college
that actually improves health more then a medical intervention or access to
care.

So I think we can’t see these two things as separate because the
intervention that we end up pursuing has to be as interdisciplinary or
multi-factorial as people lives and at least by integrating health and
education and collecting that data together I think would be a very, very
important thing to do.

DR. MAYS:  Audrey then Marjorie.

MS. BURWELL:  I just wanted to comment that many of our letters and the
IOM Reports and some of the testimony we’ve heard at hearings have indicated
that we need to collect race ethnicity in a standardized way and many of the
reports say use the OMB form or revised standards.  So even though the
movement is going on in the private sector they’re collecting it in various
different ways and we need to try to get a handle on that finding out what
their barriers are to using the OMB standards and if in fact, I remember the
states said we need to give them technical assistance in how to do this so I
think that’s very important.

In the background there’s some legislation, I don’t know exactly where it
is, Senator Frist sponsored some legislation that would require language
collection and also on the Democratic side there’s pending legislation that
would require language collection in addition to race ethnicity and
socioeconomic, or they have status in the bills but position.

MS. GREENBERG:  Collect it where?

MS. BURWELL:  To require the collection and it’s almost now where we
can’t really require that the private sector does, this legislation comes as
close as I’ve ever seen to placing that requirement.  I don’t know whether
it’s on the enrollment or transaction if that’s the question you’re asking but
it’s getting closer to requiring standardized collection in accordance with OMB
standards.

MS. GREENBERG:  I totally agree with what Kevin and Nancy and everyone,
and Audrey, what everyone said about education level, as I said I was involved
12, 14 years ago, whatever, in coming up with these recommendations and I
support exactly what you all said.  But the correlation between education
level and health behaviors and health status and health seeking and all of that
as well as the importance of explaining race ethnicity better.  However,
and I think I’m okay with it if we agree that we would do it in separate
hearings because I do think if you start bringing education in with the race
ethnicity which now we have built up some momentum and some experience and all
of that we’ll be right back to the drawing boards.

Now the only reason to do that is if, and I mean Nancy said something that
gives me pause because I’ve heard, I mean others have said the same, and at one
point I know CDC came out with guidance that said you were never to produce
data that just showed race and ethnicity, you had to have some socioeconomic
information as well.  But unless you feel like actually getting race
ethnicity without getting some socioeconomic factor such as education is worse
then not getting it at all I would say you should go ahead and try to pursue
the race ethnicity —

DR. VIGILANTE:  I think it might be worse.

MS. GREENBERG:  If it’s worse then I’d say take it off the table
because —

DR. VIGILANTE:  I think it would be very misleading, alone, people draw
the wrong conclusions, the wrong solutions.

DR. LUMPKIN:  Well, it depends upon what you’re looking at, if you’re
looking at health disparities I’ll agree, but if you’re looking at health care
delivery disparities I disagree.  When you adjust for socioeconomic status
disparities based upon race and ethnicity still exist in health care delivery
—

MS. GREENBERG:  Well, even in health status I think but less they’re
mediated —

DR. VIGILANTE:  To some extent they still —

DR. LUMPKIN:  But where the business case then comes in is that where
you have disparities and you now have increased attention on reducing those
disparities, so that the outcome of that encounter becomes an issue for
reimbursement, the health plans are looking at that to measure it, then you can
make the case of putting that information on the transaction.  Because the
transaction is the people who are the keepers of that, everybody wants to get
everything on the transaction and so how do you sort of cone that down and they
do that by saying well what’s the business case, what is involved with paying a
bill for which do you need to know race and ethnicity, not whether or not it’s
important to collect, not whether or not it’s important and that’s when health
plans start looking at paying for performance, they start looking at those kind
of things and say okay, it makes business sense to put it on there.  And
so I think we really have to be clear for what purpose and what issue that we
want to focus in on it —

DR. VIGILANTE:  So it’s not health disparity as much from your point of
view.

MS. GREENBERG:  What did you say, Kevin?

DR. VIGILANTE:  It’s not about health disparities so much as it is
about health care delivery.

DR. LUMPKIN:  I think that getting it on the 837 will be about health
care disparities and that once we do that based upon health care disparities we
will have much richer database to look at health disparities.

MS. GREENBERG:  Yeah, then it’s how you, I mean you don’t make
decisions necessarily but it’s how you then evaluate or assess what is
contributing to these disparities when obviously you need to bring in
socioeconomic factors, etc.  But I would say we’re not at all close to
getting any agreement to put education level on these transactions, maybe I’m
wrong, and I’d say probably it could be maybe collected as part of an
electronic record, I don’t know, but we are closer to getting race ethnicity so
if you say one requires the other then it’s quite a different situation here.

DR. MAYS:  We’re going to take a couple other comments, what is very
clear is we are not ready for the hearings much as we have to have a lot of
discussion among ourselves.  I think that the business case is made for
race ethnicity, it’s been great in terms of all the IOM cases and the research
that has come out, and most of that in a funny kind of way is for health care,
more so I think then anything else it’s for health care.  So it’s like if
we were to proceed and we’re going to build on a foundation the foundation that
we can build on I think the best is really in terms of health care.

I think that we need to discuss these other issues because I could give you
an argument, for example, which is about education, educational attainment
quite often for racial and ethnic minority groups doesn’t work as well as you’d
like it.  People have a high school education and can’t read, I mean it’s
like the inequity in the school is a big issue so I mean I made a note to
myself that when we do this we need to talk to the Department of Education
because they actually have some expertise in thinking about the complexity of
these issues.

But what I think we need to do is clearly we need to set up a time when this
group will have this discussion and that what we’re going to do is to come up
with what do we want to achieve, and what arena do we want to achieve it, do we
have, these are the three things that were down there, do we have the business
case.  If we don’t have the business case and it has to be made that’s a
different hearing then we have the business case and we can move ahead.
So Suzanne and then Russell and then Susan.

DR. HEURTIN-ROBERTS:  Well I’m not sure I have anything new to add
after what we’ve all said but I do think it’s worthwhile, I just want to weigh
in, I do think it’s worthwhile collecting the data on race and ethnicity alone
although I agree it would be better if we had more data, more data is always
better, because health disparities in populations are completely related to
disparities in health care and I think that race and ethnicity are very
important in understanding disparities in health care and how services are
delivered —

DR. VIGILANTE:  I don’t think the data shows —

DR. HEURTIN-ROBERTS:  I think it does.

DR. VIGILANTE:  I think there’s a relationship between access to health
but it does not completely explain disparities, in other words so there is a
very large factor that has nothing to do with access, there’s a very large
factor that has nothing to do with access that has a major impact on health
disparities.  So what I’m saying is if we’re interested in health
disparities, in actually improving population health, we have to be looking
beyond just access, it was like the AHRQ presentation, the guy came, I forget
his name, gave a great presentation from AHRQ on health disparities work.
Not really anything about sort of, he was so focused on access it was okay, if
we can solve this access problem we’re going to eliminate health disparities
and that’s just not true.

MS. GREENBERG:  Differential treatment, I mean that’s also a health
care issue, it’s not just access.

DR. VIGILANTE:  I mean access to the equal care.

DR. MAYS:  Russell then Susan.

MR. LOCALIO:  I may be repeating what’s already been said before but I
am not yet at the point that most people have been discussing because my
concern is how can we be assured that the information we are collecting through
administrative data are going to be accurate enough for anybody to make any use
of it to do anything.

MS. GREENBERG:  There have been some studies of this.

MR. LOCALIO:  So even though it’s part of the transaction I can just
say, I can just see somebody saying oh, I have to fill this field number 32 in
in order to get paid, it’s blank now but in order to get paid it has to be
filled in so I’ll just put in something so that the claim can be paid.
That happens all the time.

DR. BREEN:  You’ve been reading Calvin and Hobbes haven’t you.

MR. LOCALIO:  No, I make a living working with data and I see this all
the time.  And so what I see here is nothing other then what I see all the
time, missing data, incorrect data, and the problem is what do you do with
it.  One example, suppose you’ve got a particular racial or ethnic
minority that comprises four percent of the population in an area and you’re
really interested in them and you have missing data on ten percent of the
people in a particular health plan that serves that area.  You’re going to
be in a real bind here because you don’t know how many of that missing ten
percent applies to the small minority group.  If all the missing data came
from the vast majority, the biggest groups, you wouldn’t care but I’m so
worried that you’re going to have a selective non-response here that is going
to be very dependent on the ethnic group you’re trying to study.  If
that’s the case I would say is it worth collecting or do you just give yourself
a false sense of accuracy because it’s on a transaction, part of a transaction
or a form, it’s on a form, or required.

MS. HAYNES:  I sat on a socioeconomic status committee for the American
Heart Association about six or seven years ago and they did a year and a half
long study of socioeconomic indicators on disparities in different racial
groups and what effect it had on heart disease mortality.  And the
recommendation that came out of the report that was to collect education rather
then race per se to explain those difference.  And when you teased out the
data you could explain a lot of the racial differences by controlling for
education.  And they also looked into the reliability of education which
is very good, income is very terrible, you have 30 percent non-response usually
in surveys for income, so there’s a lot of data on that, George Kaplan chaired
the report —

DR. MAYS:  There’s an article, I think that may be one of the things —

MS. HAYNES:  Yeah, lots of reports on this that presents the case for
doing it and you hear reactions now for different racial groups that say it’s
not just black, it’s low SES black, I’m a high SES black man, my group is not
the one that we need to target.  That response is now coming from the
target populations that we’re trying to get data collected on that I think from
what I’ve heard that they want it collected too and so I think it’s worth
further discussion.

DR. MAYS:  This is why I think we haven’t, that the business case is a
difficult one at this point for some of these areas like socioeconomic
position.  It’s not that we don’t want to do it —

MS. HAYNES:  But they could save money if they knew it, if they could
know that they only need to target on the low SES folks then, not the whole
population.

DR. MAYS:  Oh, I could see where that would be a problem, are you poor,
then I need something more from you then I need from the others, my cousin who
has a degree went in and they didn’t ask them that.

MS. HAYNES:  No, but I need to do more for you.

DR. MAYS:  Okay, we’re going to wrap this up, last two comments,
Marjorie and then Bob has the last word.

MS. GREENBERG:  I mean certainly Russell raises some valid questions so
I know AHRQ has done some studies, there have been other studies that have
shown that on race the data tracks pretty well, yes there’s missing data, etc.,
certainly on black/white, I mean there are only five race categories anyway in
OMB, five or six, ethnicity is more problematic.  But just to be kind of
cynical I guess, again, I mean we have to decide, we don’t want to do more harm
then good but we also don’t want to let the perfect be the enemy of the good
and we’re not talking about surveys, we’re not talking about social science
research so much, we’re talking about these transactions.

And just to be a little cynical maybe but the biggest, one of the biggest
concerns of providers is don’t ask us to put something on one of these
transactions that we actually have to submitting order to get paid and we can’t
get the information, or that we have to now start asking information we’ve
never asked before.  With race ethnicity although I’m against it but you
can, the vast majority of people you can probably record it even if you haven’t
asked it for them.  You might not get it right and that’s not what you’re
supposed to do, but you’re not supposed to do it but I’m saying I think they
feel they have that fallback, that if they ask it, there’s no fallback on
education, if you put education you absolutely, if somebody doesn’t answer the
question you are clueless, you are completely clueless.  I’m saying you
try to collect it from the person but right now a lot of it is recorded that
way by looking at the person or looking at the parents or whatever.

I’m against that, it’s not the OMB way, but if you put something on like
education —

DR. BREEN:  Marjorie, you know that we changed that in the Census in
1970.

MS. GREENBERG:  There is no way to get it.  So I mean that’s the
biggest argument you’re going to hear, you’re going to absolutely have to get
it from the person or you can’t put anything down.

MS. HAYNES:  Well we get it when a mother delivers a child we have it
on the birth certificate, we already have systems that collect education of
individuals within the NCHS —

MS. GREENBERG:  But a birth certificate is very different then every
claim that’s submitted —

DR. MAYS:  But I think that’s the question —

MS. HAYNES:  It doesn’t need to be on every claim, it needs to be on
the basic information you collect on that one person, it doesn’t have to be on
every claim —

DR. MAYS:  I think all of that is still on the table.  Okay,
folks, we could talk about this until, I mean we could miss the rest of the
meeting tomorrow, but we are going to schedule a meeting where we are going to
talk through these issues because we have to go in a hearing with clarity as to
what we want to answer and we among ourselves have differing opinions which
it’s fine to have them but it’s not fine to have different questions, we want
to come up with what the questions are, you can keep your opinions but it’s
like for the sake of the outcome of what we’re attempting to do we need to get
clarity as to what we think the best thing is so —

PARTICIPANT:  And what the business case is to collect education.

DR. MAYS:  Exactly.  So you’re going to need —

DR. VIGILANTE:  What are our goals, I mean what are our goals?  Is
our goal just to, is our goal eventually to try to improve health, am I right
or wrong —

DR. MAYS:  It better be, I mean I don’t think it’s —

DR. VIGILANTE:  But it’s not just access, but it’s actually health —

DR. MAYS:  Wait a minute, if we have to have a long discussion on that
one we’re in trouble.

DR. VIGILANTE:  I only say that because, John correctly said it’s
disparity in health care rather then the disparity in health and it’s a very
different thing.  I think that is not, health care is just in service of
health, it’s a means to an end not an end in itself.

DR. MAYS: — you all are getting into these finer distinctions —

DR. BREEN:  It’s not a fine distinction but then it also raises the
question of what outcomes, I mean it is a long discussion so I suggest we table
it.

MR. HUNGATE:  I hope it’s an early discussion, I don’t want to end up
going off the committee leaving —

I would ask that we schedule a time as soon as possible and that we say that
we’re going to decide in that meeting.  I think that we need to hold our
feet to the fire on this one.

DR. MAYS:  Bob I think that Populations needs to schedule itself for a
two day meeting, and in the two day meeting there are several things, we should
work on the report, if we can get a time before the report we can work on the
report, oh, we can’t get a time that fast —

MS. GREENBERG:  We’re talking one month here, less then a month.

DR. MAYS:  Oh, I forgot in terms of deadlines, I was thinking November
but you’re right, it’s less then a month.

We need to schedule a two day meeting and I think it will be to talk about
this, to talk about the mental health, we have several things that we could use
some time to talk what are the issues, so the date will be little different but
it will be

MR. HUNGATE:  Well, let me know and I would like to participate in
these discussions.

DR. MAYS:  We think Quality should come and we also think for part of
that is I think Quality should be there and Standards should be there, so
probably what we’re going to try and do is to see if we can coordinate it with
times that you’re meeting and just end up with —

MR. HUNGATE:  Let me suggest another enabler maybe, pick a three person
committee, Standards, Populations, Quality, to do —

MS. GREENBERG:  Maybe we’ll have a full committee meeting then.

MR. HUNGATE:  A subset agenda of this topic area, if this, we need to
probably detail, outline it a little bit —

DR. MAYS:  Oh yeah, I think we need to, but I think we would do it a
little different, I like to have conference call and have people detail what’s
to be discussed and then to do that as opposed to having it all reside in one
person.

MR. HUNGATE:  Thank you for the time.

DR. MAYS:  Thank you.

MS. GREENBERG:  — even though we didn’t ask them this, then we have
the hearing on September 14th about recommendations one through
eight, since it’s the same people from the point of the Standards group, not to
address the type —

DR. MAYS:  I’m going to actually do it by phone.

MS. GREENBERG:  But I think it will come up about the possibility of
getting race, the functionality of the current standards to collect race
ethnicity.

MR. HUNGATE:  It probably should come up.

DR. MAYS:  I’ll bring it up then since I’ll be on the phone for part of
the time.

Alright, thank you.

Let’s see what on my schedule I can do, I think probably what we should do
is talk a bit in the time that we have left about mental health statistics
because this is something I think we also really do need to move ahead on, the
train is leaving us on this.

Can you make sure Suzanne gets to see that in preparation for
tomorrow?  There’s a special issue of epidemiologic reviews that’s all on
socioeconomic position and epidemiology, so there’s several interesting things
and there’s an article in there that I actually want to give to the committee
tomorrow.

Agenda Item:  Discussion of the Collection of
HHS Mental Health Statistics and Potential Future Subcommittee Activities on
this Topic – Dr. Mays and Dr. Kennedy

DR. MAYS:  Should we talk a little bit about what went on on the phone
calls?  There were several of us on the phone call, we ended up with no
notes —

DR. KENNEDY:  Hey —

DR. MAYS:  Stickies are real here, so let me not say we don’t have
anything.

DR. KENNEDY:  Actually I have to confess, these are the stickies that I
made —

DR. MAYS:  As you know the way that this all started was when NHANES
was talking about dropping some of the items that it was collecting on its
mental health modules and part of that was because NIH who had supported it
felt as if they were getting plenty of information and that they didn’t, it’s a
six year cycle and so they didn’t need to put the information in yet
again.  And I kind of freaked out and I’m like well wait a minute, there
are certain things in health we would just never drop, they’re always
collected, some of them are even collected I’ve come to find out in a very old
fashioned way because we want consistency.  So for me it raised the issue
of where are we in the department with a set standard about what kind of mental
health statistics should be collected, and also the position, the perspective
that we have on mental health statistics.  Do we want to know anything
about people’s emotional well being the same way we want to know about people’s
overall health.

Well, after we talked about this a bit in the committee we had a conference
call and we invited colleagues in other agencies who are responsible for mental
health statistics so we had Karen Borden(?) at NIMH who does child mental
health, we had Lisa Colpay(?) who is the chief for the adult psychopathology
branch, we had Eve Macheeskee(?) who does the child, we had —

DR. KENNEDY:  Nobody from SAMSHA and we had two people from NCHS, we
had Gloria Simpson and Jennifer Maddens.

DR. MAYS:  And Jennifer Maddens.  And the distinction that was
made was first and foremost the difference between statistics collected for
surveillance and that falls into the purview predominantly of NCHS, and the
statistics that are collected for prevalence and NIMH has been doing that, they
have been funding an enormous amount, at an enormous cost I should say, a whole
series of studies starting with Ron Kessler, well starting in the 80s with the
epidemiology catchment area project followed in the 90s by Ron Kessler’s
national co-morbidity survey, followed by his reinterview and a series of
ethnic studies that have been done, and then I have kind of a similar one for
the state of California where we’re also doing it as a follow back onto the
CHIST(?) —

DR. KENNEDY:  And one thing, may I just supplement a little bit what
you’re saying?  And there had been an attempt in the mid 90s I guess to
do a child mental health survey, the acronym was the YNOCAO, Youths Needs
Outcomes for Child and Adolescent Psychiatry I guess and a lot of preliminary
work had been done but it had been very, very difficult to get together and so
that project, rather then continue they dropped.  But there’s some
preliminary data which was the mini ECA and the acronym is MECCA(?), which
Karen Borden was most familiar with so there’s some preliminary kid data.

DR. MAYS:  So in talking with people, we asked, well I asked the
question what’s your wish list and there were some things that evolved.
One is there needs to be some, it would be helpful to have coordination, I mean
that’s nothing new we heard that for lots of things, but coordination across
the department.  We know that SAMSHA is collecting data but we didn’t get
to hear from SAMSHA, doesn’t HRSA collect data also, mental health data?
Yeah, I think HRSA, I think there’s something that HRSA has mental health data
on, and also looking at the difference between, I mean I think the question
that we also need to focus on is what do we need from surveillance versus what
do we need in terms of prevalence, I think that’s a critical question and that
that will actually to some extent drive the notion of what do we need to
collect all the time.

The other thing I was totally shocked about was I’m of this issue of don’t
you want to know if people are doing well, if they’re healthy, I mean
resiliency and well being in mental health is a big issue now.  Well I was
told that they have a hard time collecting that data because their
responsibility is really to focus on taking care of people and making sure that
you’re providing the right services, that you’re identifying problems, but it’s
not to ask the question like how happy are you.  And it’s interesting
because that question is a really important question, resiliency is a really
important, you can learn from those who are doing well, not just keep focusing
on those who are seriously mentally disordered.  But they said they would
like something like that but a business case has to be made in order for that
kind of data to be collection.

And it’s interesting because NORK(?) has been doing this for years and
there’s times, I mean I’m writing a paper that comes out of the, I’m sorry, the
general social science survey, they for years have had this question on
happiness and they have, I mean there’s several variables in there we use and
it’s been a barometer, and it was great during 9/11, it was great during
various points of time, you could probably look at where we are in terms of CPS
and a lot of other measures and take the happiness but we have to make a
business case for that.  So I thought, I just didn’t realize —

DR. KENNEDY:  I mean we all agree that we knew that Vickie came from
California so we understood, it’s really only in the last three years that
we’ve had to make a business case for everything we do.  But more
seriously there really is a stated case for example at NIMH and every year they
get reviewed, what proportion of your grants and everything are going toward
people with several mental disorders but it’s not at all impossible.  Two
things have to happen, is the notion of happiness and/or well being, which may
be two different things, I’m not going to go there now, and psychological sense
of well being as opposed to the quality of life which is sometimes that can
mean physical quality of life as opposed to psychological well being but I know
you’re talking psychological well being, needs to be hooked up with the notion
of resilience because you can just, I don’t know, is there a case for that to
be an indicator or measure of resilience as opposed to just a sense of well
being.  And it would not be impossible, speaking from, this is from an
inside the Beltway, I mean the place to make the case for well being and/or
resilience would be probably in the Healthy People context.

DR. MAYS:  That’s a great idea.

DR. KENNEDY:  But I didn’t say that, that part didn’t get
recorded.  But anyhow, cases can be made for these things and not having a
crystal ball, not knowing what will be happening in our next year, there has
been in this current administration a focus on obesity and healthy lifestyle
and certainly well being would go along with notions of a healthy lifestyle as
a way of preventing ill health and looking toward the future so that we build a
healthy population who when they retire we can afford on Medicaid and Medicare
and Social Security sorts of ways.  So there are ways of handling it but
just so that we’re just very clear, for example, NIMH has been, I don’t know if
it’s actually mandated but to deal with the more serious of the mental
disorders and they’re the ones that do the epidemiologic surveys.  That
said I know that in their services research branch some of the program
announcements look at things like social supports and so that there are things
that complement and make a connection.

DR. MAYS:  The issue may also be from the surveillance point of view is
that something that you’d want in surveillance as opposed to something that’s
in the NIMH in terms of prevalence.  So I think part of what’s important
is for us to think about is how important is mental health to understanding
ones overall health.  I don’t think the case is made well enough within
HHS that all of the focus on physical health that without some sense of mental
health or well being that you’re actually missing an important component.

So while I think we talk a good game about mind and body I don’t think that
data analysis, like if you look at the data that’s put out by HHS it’s physical
health in this report and mental health in this report, rarely do you see them
also putting mental health in the physical health report.  And some of us
have been doing research that actually says particularly for racial and ethnic
minority groups, things like discrimination, it’s not only resulting in poor
mental health but that it has a relationship to physical health.

So I think we’re at a point where we can begin to make a case for needing
that some of the people who are collecting physical health data to utilize it
also with some mental health data.  And it may be that the definitions of
mental health within the department tend to be in terms of psychopathology or
in terms of serious disorders, or in terms of substance abuse —

PARTICIPANT:  Or lack thereof if it’s health —

DR. VIGILANTE:  You can foot that and say mental health may in part
have biologically related, that as we go towards a biological model of mental
health and mental illness that the analog to physical health is actually
stronger then it used to be and actually there’s a final common pathway that
does bring them together at a biological level which is to say that they are,
the case is stronger then it ever was that they are intimately related.

DR. MAYS:  I think it’s one of the ways to make the case, I think
there’s a lot of different ways to make the case but I think that’s the issue
is we need to make a case, we need to actually understand the inventory of
what’s available, I mean that I think in and of itself is going to be a bit of
work but I was told that for instance Jennifer has done it for, because I guess
they had a discussion with STAT Canada, so she has an inventory, and I’m told
to talk to Ron Manderscheid(?) because I think he has it in terms of the NIH
side, so that in and of itself would be very useful for us to get some
information about what is collected and how, I think it’s also important to
just not know okay there’s this variable but to me it’s so critical to know
that the two aren’t usually in the same reports.  Eugene and then Suzanne.

DR. LENGERICH:  Another person to add possibly to your list there is
people at CDC, Dave Moyerarity(?) has done a lot with the BRFSS(?) data and
their set of five questions on depression and, they’ve done a lot in that area
and I think that that group, the BRFSS groups at CDC would be important to talk
to as well.

DR. MAYS:  Okay.  Suzanne?

DR. HEURTIN-ROBERTS:  I think it’s important to consider the point of
view of organizations like NAMI, National Alliance for the Mentally Ill,
because I think the case can be made that NIMH is focused on the serious
mental, the seriously mentally ill is in some part a result of NAMI’s lobbying
because I think it wasn’t always this way, there was a more balanced view of
mental health that included —

PARTICIPANT:  As opposed to pathology.

DR. HEURTIN-ROBERTS:  That included health as opposed to pathology and
not only the psychoses and things like that.  Anyway, I think that’s
important, it’s a political issue you’re going to have to still tangle with.

DR. CHAPA:  I was just going to say I think some of the concerns of
NAMI that as they have expressed came from some of the research that didn’t
have translatability and so that’s what the news, you read it in the paper
often, NIMH studying rats, something, or pigeons in love so you see there’s
always —

It’s not really my point, it really is something that’s used as fun in the
media politically so that there’s, so that what’s being done is cute and I
think that gives validity —

DR. KENNEDY:  The other think to take into consideration and this goes
along with what you’re saying is that it is as if there’s a continuum
necessarily, I mean this is my hypothesis, between well being and ill health,
whether it be mental disorders or whatever because I think you can certainly be
physically unwell and still have a sense of well being, or be happy or however
you want to do it, there may be different dimensions and there may be startling
reactions but it also may go to the NAMI think where if you don’t resent it
necessarily as a continuum or to explore the potential for different
dimensions.

DR. VIGILANTE:  Certainly strong correlations, very strong, it’s in the
cardiology literature, about depression and isolation and bad outcomes post MI.

DR. BREEN:  One thing you said was surveillance versus prevalence, I’m
used to the oppose of prevalence being incidence and so I wasn’t sure what —

DR. MAYS:  I probably should say incidence and prevalence, I think
that’s what they said —

DR. BREEN:  Surveillance is kind of the usual monitoring and I think
you did want to distinguish that in these large studies, large national studies
that are trying to be nationally representative, right?

DR. KENNEDY:  At best they’ll get you once every 15 years an annual
incidence rate which will be, they have stronger prevalence data.

DR. BREEN:  And I’ve tried to use just anecdotally the NHIS mental
health indicator and it’s definitely measuring pathology or else this country
is extremely mentally healthy and living here I don’t believe it.

DR. KENNEDY:  Are you referring to the CASICS(?), in the HIS 2001 —

DR. BREEN:  Yes, they are, but the CHIS(?) used a different one, one
was CASICS and one was Kessler —

DR. KENNEDY:  No, Kessler’s is CASICS —

DR. BREEN:  Okay, there was another one, K10(?) maybe, I don’t know
these because I’m in the field at all —

DR. KENNEDY:  CASICS is a subset of the K10 but the point is that
they’re, he called them a measure of psychological distress because they’re not
exact, he’s trying to capture the broadest population of people who might have
mental disorders and he winnowed them down mostly from diagnostic interview
schedules used in surveys of the two highest prevalent depression and anxiety
so you’ll see those mostly reflected, schizophrenia being so low prevalence —

DR. MAYS:  — there’s been some discussion about how CASICS is working
because we just went through a whole thing, even called him about it to see,
there’s parts of it that have problems —

DR. BREEN:  Well what was interesting was he had published or there
was, he had published something, he’d come out with some findings, and it was
published in the Times or the Post, maybe months ago, within the last year, and
there was a percentage of people who were mentally ill and it was exactly the
same percentage that we found in the NHIS, I mean it matched up perfectly so
that was good, but it was a tiny percent so if you wanted to look at it cross
tapped with anything else.

The other thing, the Scandinavians are doing a whole lot on this and they’re
trying to understand health as a composite of socioeconomic well being,
happiness, resilience, education, social support networks, I mean they’ve got a
whole range of things.  I don’t know if they incorporate spirituality in
there but I think that would be another piece that you’re doing well on that
realm as well and I don’t know if that’s included in the mental health
literature or how that factors into this.  But I agree completely that we
should be measuring the whole spectrum of things that go into people’s well
being.  And it seems like that might be another whole conversation.

DR. MAYS:  What we’re going to do is there’s a kind of subgroup and if
people want to join it they should just let us know, we’re going to charge them
with two things at this point, one is trying to find out what’s being
collected, so I mean we need to get from people what’s being collected, who
collects it, how frequently, so that we have some sense of it.  And then
the other will be, which is I think the more difficult discussion, is what is
it that we need to know again to improve people’s health.  I’m not going
to get to the complexity of health or health care but I think that’s what this
group is going to do.

So the smaller group I will have them pull things together but again this is
something that when we have a larger meeting we all need to talk about as I
think a critical issue.  But the problem we’re having is we do need people
from these other agencies so we got to work on a way to see if they can be
either detailed or participate with us for some point in time because this
won’t work if we don’t get the SAMSHA people to work with us.  It’s not
going to work if we don’t get NIMH to kind of on an ongoing basis to work with
us because this is so much a part of what they’re mandated to do that this, I’m
always very careful about, I don’t see us coming up with recommendations and
then the agencies are like gritting their teeth like we don’t even do this
anymore, we don’t want this, it’s like we need to hear from the agencies and we
need to try and work with the agencies and not do things that dictate to the
agencies and then it’s just not even relevant.

MS. HAYNES:  You know SAMSHA has its own data committee —

DR. MAYS:  It does?

MS. HAYNES:  Because I’ve been invited to go testify before —

DR. MAYS:  Like it’s own data council?

DR. CHAPA:  Actually Ron Manderscheid, isn’t he —

MS. HAYNES:  I got an email from SAMSHA asking me to come submit my
data project, but this one and the one that we’re doing with the county data,
present before their data council on September 21st —

DR. KENNEDY:  Is this a data council or their advisory council?

MS. HAYNES:  I don’t know, I can go up on my email and see.

DR. CHAPA:  But they do have an office of advice, SAMSHA, and they do
some surveillance —

And they do have some data group with regard to states, so they have state –

DR. MAYS:  I mean is it like the Data Council where they —

DR. CHAPA:  I’m not sure exactly everything that they do but I do know
that —

DR. MAYS:  That’s someone we should contact.

DR. KENNEDY:  Keep in mind that SAMSHA has got three centers
underneath, Ron is in the Center for Mental Health Services, the Office of
Applied Studies is up at the SAMSHA level and they’re very different.

DR. MAYS:  So would Ron know what’s going on in that other office or do
we need to get, maybe we need to get somebody from, when we start let’s get
somebody from each of them and they can sort it out among themselves if they
don’t think that one person could represent all those offices, I think that
might be, all three offices —

DR. CHAPA:  I agree with you, it’s OAS that would be —

DR. KENNEDY:  And how broad are you saying mental health?  I’m not
saying the well being part but are you including substance abuse because
remember there are two substance abuse centers and —

DR. MAYS:  I think that’s what the committee should discuss, I mean I
know what my personal feelings are but I think there’s more politics involved
and those I really don’t know, so I think, I don’t want —

DR. KENNEDY:  If you include the substance abuse in SAMSHA keep in mind
there are two substance use —

DR. MAYS:  NIDA and NIAAA.  And see we haven’t asked them to come
to the table and I don’t know whether it’s a good thing to separate them or
whether they should be included, but I know from a data perspective they also
fund and collect a fair amount of data that’s not, it’s on substance abuse but
it’s also mental health so to some extent —

DR. CHAPA:  It’s done collectively —

DR. MAYS:  So they will also collect data on depression and alcohol use
so there’s ways in which what they get is valuable but it’s just that it’s for
a very narrow population, meaning usually it’s for substance abusers.

So those are the tasks that I think we’re going to face in doing this so I
think our next thing will be to work with the mental health community, Don
Steinwachs is very involved in it?

DR. CHAPA:  Could I make a last comment?  My office has asked me
to look at mental health in primary care settings for racial and ethnic
populations and I wasn’t quite sure why we were spearheading this and this is
my feeling and not SAMSHA’s and NIMH but I’m just going to do a little scan and
concept development and then from that point on I believe this is what I know,
this is tentative so don’t me to hold everything because we have zero budget
currently, that will bring in the other partners at that point.  There are
folks that have been contacted at the community level, not by me, this was done
previous to me being brought in, and some of the folks also from the various
operating divisions, so SAMSHA and IHS, etc., so I just wanted you to know that
that has just come about, I’ve got 30 days to pull it together —

DR. MAYS:  I can tell you where a lot of data is on that, the HCC, the
Healthy Community whatever, I forgot what that other C stands for, but HCC has
a lot of data, RAND has a lot of data on this.

DR. BREEN:  Are you looking for data sources or studies?

DR. CHAPA:  Well, I’m actually looking for studies, and I have done
some —

DR. MAYS:  Those are the two I would go to, they’ve actually developed
some modules, Lisa Rubenstein who’s at the VA has developed some modules, and
Maja(?) Jackson something, I can’t remember her married name —

DR. KENNEDY:  Has Ken Wells been doing some —

DR. MAYS:  Maja is in Ken’s center and so is Lisa, and Jeanne Miranda
—

DR. CHAPA:  Right, I found those.

DR. MAYS:  So they have some very specific —

Alright, thank you folks, I think we should probably stop for now, we’re
right on time.

[Whereupon at 5:00 p.m. the meeting was adjourned.]