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TABLE OF CONTENTS
Committee Discussion
DR. MAYS: There are other people who according to the RSVP will be here. I'm not sure exactly what they are, but we really would like to start, because while it seems like we have lots of time, we almost never have enough time. Part of why we have time today is because we pulled the discussion of our report off the agenda, so I want to use the time today, so that next time it is on the agenda.
So let me get started by welcoming everyone, thanking you for taking the time to be here. Some of us are here already, and then some of you, particularly those of you who are on a subcommittee, are often eking out time from your 40-hour a week day job to come and spend a couple of hours with us, so we really do appreciate it.
Yes?
MR. LOCALIO: Not 40.
DR. MAYS: Oh. Those of us on the committee, it is worse.
MR. LOCALIO: For the record.
DR. MAYS: Oh, for the record, right. Anyway, where we want to start is with introductions. So let's start on this side.
(Whereupon, introductions were performed.)
DR. MAYS: What we are going to do today is change the agenda just a little bit. Eugene?
DR. LENGERICH: I'm here.
DR. MAYS: We want you to introduce yourself.
DR. LENGERICH: I'm Gene Lengerich. I'm at Penn State University and member of the subcommittee, and presently on vacation.
DR. MAYS: We have a couple of other committee members who are going to call in and join us.
PARTICIPANT: Who is calling in?
DR. MAYS: Suzanne Heurtin-Roberts -- I'm sorry, for the subcommittee, not the full committee. So Suzanne Heurtin-Roberts is calling in, and Kay Aron Felix is calling in.
DR. GREENBERG: Only members of the full committee can be members of a subcommittee. So everyone who isn't a member of the full committee is staff.
DR. MAYS: We are going to start by talking about the report, but I want to do a couple of other things. What I sometimes realize is that some of you come and you are only at this meeting and you aren't at the full committee meeting, but there are things that are happening at the full committee meeting that are significant, and I also put on our work plan. So I want to try -- again, we're going to try a lot of different things to try and have some consistency, and to make sure that everybody stays on the same page.
One of them is probably to start with some of the agenda items that are relevant to the group that you weren't there for, and then we'll go into the other part of the agenda.
Does everybody have -- there should be a letter addressed to John Lumpkin. I want to talk a little bit about the letter.
DR. LENGERICH: Vickie, what I have is the package that Gracie sent to all committee members, so if it is more than that, I don't have it in front of me.
DR. MAYS: Eugene, we just got this today, so I wasn't aware of it, either. We'll talk in a little more detail than we normally would, so that you will have a sense of what we are talking about.
These are the responses to two letters that originated here in the Subcommittee on Populations. The first one is a letter we sent with our concerns about what the possible budget cuts might do to NCHS' survey, particularly the NHIS. We talked about that, we brought that before the full committee.
What we heard from presentations at the full committee was that in terms of budget cuts, the budget cuts may actually impact the design of the NHIS, and in that you might actually impact upon the sample size. So again, we were concerned about that.
What we have back is a letter to us. I think if I can sum up, because I did ask a question earlier in the response from the Secretary. I think what will happen is that the discussion will be a much broader discussion, which I actually think is a very good outcome of our letter.
So this has been brought to the attention of the Data Council. It will provide an opportunity for NCHS to do a presentation. I don't know what that means in terms of budget cuts, but at least it will mean that there will be more of a discussion about the implications of the budget and what may have to take place. I would assume with the Data Council there, there can be suggestions of how to try and get the most bang for the buck in terms of however the cuts may have to land at NCHS.
So I think it was fruitful. Let's see what happens in terms of the discussion. We will look forward to hearing -- can we get reports from the Data Council to us on this? John actually sits on the Data Council.
MR. HITCHCOCK: Supposedly the heads of all the agencies and offices report directly to the Secretary. For instance, there will be an NIH representative --
DR. GREENBERG: And actually, NCHS, because the director serves as the special advisor for statistics, also the director serves on the Data Council.
MR. HITCHCOCK: Right, and the privacy advocates in the Department. Other than that, it is agency office heads.
DR. STEINWACHS: I guess, Vickie, the one thing that bothered me was, it didn't seem there was going to be any reconsideration of the reduction in sample size in the short term. Maybe you read this more generously, but I took it as that there would be broader discussion of long term benefits of redesign and re-engineering, but it sounded like the sample would be reduced in the short term, almost no matter what, just because --
DR. MAYS: Part of what I want to try and do is to make sure it gets brought up to date and all that, because a lot of things are happening. For those of you who haven't been on the committee a long time, I think the issue on this that was brought up was that it is not necessarily -- and please correct me if I'm wrong, but the budget cut is to the NHIS, but that the implications of the budget cut are for NHIS.
So I think in the discussion that is where once the whole case is laid out, does it have to be that NHIS is cut, are there other savings that can be taken in other places. But it doesn't have to be NHIS.
MR. HITCHCOCK: The thinking being that we call this the flagship of our health surveys. We still have somewhat of an effort toward survey integration. We link other surveys to the NHIS. We really don't want to see it cut.
DR. STEINWACHS: (Comments off mike.)
MR. HITCHCOCK: Yes, that is not a trivial cost. I understand the NCHS is still negotiating with the Census Bureau, who does that work. When the Census Bureau came in, the cost was really astronomical at first.
DR. MAYS: So I do think that the budget is going to probably be one in which there are cuts, but to what is I think a different question.
MR. LOCALIO: I am somewhat at a loss here as to -- what are the implications of the letter to our current activities, and what can we request to do about it.
Marjorie, interrupt me if I'm getting out of line. For example, we don't know too much about the technical decisions or considerations that go on at NCHS and their implications in terms of any sample size reduction or redesign of the national health interview survey. At least, I don't. Do you, Don?
DR. STEINWACHS: Only a little bit. The last time Ed Sondik was here, I got some discussion, but --
MR. LOCALIO: We talked together. So we don't know that much, and we don't know too much about the tradeoffs and the implications of those tradeoffs or the issues that the subcommittee discusses -- subpopulations, minority populations. We really don't know that.
We know there are some tradeoffs. So my question is, do we, or how do we, or do we not participate or get regular information on the decisions that NCHS makes in this regard, and when do we get the opportunity to comment?
DR. GREENBERG: Actually, I might mention -- I should anyway -- that I did get an e-mail this morning from Jennifer Madden, who is the Associate Director for Science at NCHS, saying that she is planning to come down to this meeting today, but I think she had a meeting until about three, so she might not be here for another hour.
But she certainly is extremely knowledgeable on these topics, so I think she would be someone you could ask a lot of technical questions of. She at this point isn't prepared to say exactly what is going to happen.
As indicated in this letter, because of its implications for other parts of information in the Department, this is going to be discussed not just at the NCHS level, but at the Data Council level.
I know that Dr. Sondik has on a few occasions asked this committee to help him help NCHS look at these tradeoffs. I think you are absolutely right; you can only do that with more detailed information than you currently have. I think there is a willingness to provide that if you ask for it.
DR. MAYS: Let me also make another comment that might be helpful. It is one of the things we are attempting to do. We do have a staff person from NCHS that sits on this group. The person just hasn't been attending. So we have actually been talking with them about the necessity to have that kind of representation. I think it will help also if the person is here and if questions like this keep coming up, we can get either them to be able to report on it, or to go back and get it from another level.
So hopefully if we can get that to work a bit better, I think it will be more helpful, too. I think what is happening is, we get updates at the level of Sondik's presentations, which are usually a couple a year, but it would be helpful for this group to have a person from NCHS with us on a regular basis.
MR. LOCALIO: Before we leave this, attendance at the meeting may not be possible all the time, because people are busy, but it might be nice to have NCHS or the staff member provide us with the technical information that we might need at an appropriate time by just sending it to us.
Now, I only know what I read in the literature. I know NCHS does put out technical information, but I shouldn't have to find it in the literature, I should be able to see it. Somebody should be able to help us find it and put it together, if as I think it has an impact on many of the issues we discuss. Maybe I'm not communicating right.
DR. GREENBERG: Well, it is important to specify what type of information you want, and that information can certainly be provided. I know -- I met with the Deputy Director yesterday -- there is a commitment to have a staff person involved with the surveys, and I make that distinction, because several of us already work at NCHS, but we are not in the survey program, but involved with the surveys, participating regularly with the subcommittee. It hasn't happened more recently, but we have in the past. We will address that.
If the issue at hands is vital records, we will get someone here who is an expert in the vital records. So I can commit I think that we will do a better job, and we will have somebody here who can address the surveys or the vital records. But if you want technical information, we need to know what it is that you want. I think it is always better if that is provided in writing, to have someone who can also answer questions or help interpret it, too. So that would be my preference, to have a person as well as written materials.
DR. MAYS: Let me make a suggestion.
DR. LENGERICH: Marjorie?
DR. GREENBERG: Yes.
DR. LENGERICH: Marjorie and Vickie, let me interrupt. I saw on a list here just a couple of days ago that there was -- somebody was nominated to the NCHS scientific advisory board, I think it is, so it seems like that is making progress.
DR. GREENBERG: That does appear to be making progress. There is a nomination package up in the office of the Secretary. There are nominations being made. Exactly when they are going to have their first meeting, I don't know, but I think it is going to be established, and then it will be important, as we have said from the beginning, to make sure you have a liaison relationship between that scientific advisory board and this committee.
Initially, this goes back to before you or Don were members. Dr. Sondik did come to the full committee -- actually, Don Detmer I think was chair back then -- and asked the extent to which the full committee could serve in a more hands-on advisory capacity to the NCHS, which it did more in its earlier years, when there was less HIPAA, less Medicare, less everything.
DR. STEINWACHS: Wasn't much else to talk about.
DR. GREENBERG: Hence its name, Vital and Health Statistics. I think the committee just came to the conclusion, and John was involved with these discussions as well after he became chair, that given all of the other responsibilities with privacy, et cetera, that although they had a lot of interest in NCHS, they just were not able to devote the kind of time to NCHS technical issues down in the weeds that Dr. Sondik required. So there was an agreement that he should go forward and try to get a scientific advisory board. We had a change in Administration, it took quite awhile to get that going.
But I think it is going to be established now, but I think it is really important that this committee and particularly this subcommittee have a strong liaison relationship. At one point we even talked about someone serving on both committees, and I don't know the status of that. But definitely some kind of relationship is going to be needed.
DR. LENGERICH: Marjorie, I wasn't calling into question the history or the --
DR. GREENBERG: No, but it might be helpful to people who haven't been involved to know what the history is.
DR. LENGERICH: I was just raising it, because I think establishing that real liaison working relationship is something that should be a fairly high priority for this subcommittee.
DR. GREENBERG: We had even talked about having one meeting a year together of the scientific advisory board and NCHS.
PARTICIPANT: That seems like a good idea.
MR. LOCALIO: I like that idea.
DR. MAYS: Why don't I put it on our work plan, an action item for us to follow up on two things? One is to follow up on this liaison. It will take them time probably to get their nominations through, but I think if we put the progress in place, when it does occur, we will know exactly what we are going to do.
DR. GREENBERG: I think that has pretty much been decided on now.
DR. MAYS: Oh, okay, so we know?
DR. GREENBERG: No, I don't know who they are, and I don't know when the first meeting is going to be.
DR. MAYS: No, I mean our process.
DR. GREENBERG: I think it is premature to talk about your process.
DR. MAYS: Our process in terms of our relationship, et cetera. So when it starts, we're not catching up to them, but instead we have a sense of what we are going to do, who is going to do it, and some anticipation of pulling together whatever resources we need to be able to do it. So that is one suggestion that is a part of the actio plan.
The other -- and I want to get back to your request -- I think that maybe the way to think about this is to ask the question of NCHS relative to what we think we need to do our work. I don't know if it is just a technical report as much as, let's feel out the question. The question may be, what is the implications of whatever budget cuts or process that you are going to engage in to reducing, changing or eliminating data for population health, especially as it applies to racial and ethnic minorities.
Let's start with that as the question, and then see what we get, and then maybe we can ask for more technical detail on how they are going to do it. They may tell us that there is going to be enough statistical controls in place, that we are still going to be able to predict the same things. Then we might say some of us might like to see it. Or they might say we are going to lose quite a bit of power.
I don't know what they are going to say, but I think we need to know what we are going to ask for first. Would that be a fair question to ask?
MR. LOCALIO: Could I reverse the question a little bit?
DR. MAYS: Sure.
MR. LOCALIO: I would ask what are the implications of the findings for the various hearings that you had in California on the decision making process of NCHS on the tradeoffs, in terms of their design-redesign discussion.
DR. GREENBERG: You hear from one group, and then --
DR. MAYS: Could you spell out what you are saying?
DR. GREENBERG: I mean there are a lot of tradeoffs, and that is the problem. The hearings, you hear about a set of issues that are not going to be as well covered perhaps. Then there is another set of issues that maybe you didn't hear about. It is hard to take from hearings on a particular topic to then extrapolate for the entire --
DR. MAYS: But I think I know what it is going to -- that is, about what is going to happen to small groups, under represented groups in this change, because the situation is going to get even worse. So I think his question about L.A. -- and also, had he been at the Native American, it would have been very much the same. If it gets worse, it really is pretty bad. So I think it is again the issue of small and dispersed populations.
MR. LOCALIO: I just think the purpose of hearings is to elicit from people -- and there may be special interest groups, but at least groups -- about the particular problems that they face; what is the mechanism by which that information then gets sent to the people who are in the process of rethinking, redesigning, re-evaluating, rebudgeting the surveys that may resolve or not resolve their problems.
DR. GREENBERG: That gets into the second letter as well, the letter you sent the end of March, which wasn't specifically about the NCHS budget, but was about the needs for information on a number of smaller groups and on a number of topics.
MR. HITCHCOCK: I think we are all agreeing that there is not much there in NCHS for small groups now, and NCHS may not be the vehicle. I think we learned that in some of our hearings, that to really address the needs of small populations, particularly those within relatively defined areas.
DR. GREENBERG: True, but collection on data on language, primary race. Some of this is related.
DR. STEINWACHS: On a very practical level, the train has left the station on this. I'm just trying to understand the time frame.
John, I don't know if you know when the Data Council is going to be talking about the tradeoffs, but it seemed to me if this population committee is going to have a chance to weigh in, then we need to understand the issues we are talking about here, as well as be able to do it in a timely way, so that John can represent that, or we can have a letter in and so on around that.
I don't know that John or Marjorie or anyone knows when this is going to hit these kinds of decisions. I know the budget won't be final for awhile, but --
(Simultaneous discussion.)
DR. STEINWACHS: John, would NIH support an expansion of their support for the NCHS?
DR. GREENBERG: The 2004 budget is already on the Hill. It does I think represent a reduction for NCHS.
DR. LUMPKIN: And '05 is already out the door. There have already been discussions in the information about '05.
MS. BREEN: For clarification, would 2005 be the one that we want to talk about then?
DR. MAYS: I think we want to see if we can lessen what the ax will be in 2004, and have some impact on how it is done, and then to try and recoup if possible for 2005 would be I think the suggestion.
But what I would like to do is one, to plan the bigger issue, and that is where we are going to go a little bit later in the discussion. This is exactly what I think this committee has to do a little more often, is to make sure that we don't get so caught up in the hearings and the report that we don't have a chance to comment as issues are going on.
So why I changed the agenda today was, once I saw this, and in a second letter saw there was going to be this discussion on feedback in 90 to 120 days, I want to get a sense of -- and I'm so glad that you attended; I didn't know you were going to be here and it's great, so I can ask the question, since you are our representative on the Data Council, what are some of the strategies that we should engage in, in order to be able to give them some commentary that can help.
Is that something where you just do this, or is that something where we brief and inform you and give you something? Or do we give them something, so that they understand -- and I'm sure they do, but that they understand at least what we think are some of the compelling issues.
So thanks for coming.
DR. LUMPKIN: I don't have a real good answer, because it really goes to, there is a subcommittee of the Data Council, and these kind of issues work at the subcommittees and then pop up.
DR. GREENBERG: The data strategy.
(Simultaneous discussion.)
DR. MAYS: Where is this going to be discussed, just so I understand, John.
DR. LUMPKIN: I don't know that.
MS. BURRELL: James Dolan has asked us to give --
DR. MAYS: In your work group?
MS. BURRELL: In our work group, so we will be working on this, looking at the potential impacts of reducing racial and ethnic data sample sizes on all of the surveys across the Department, and giving recommendations back to Jim Scanlon's Data Council, and then in return they will respond to you.
MR. LOCALIO: It is not just a question of reducing the sample size. It is a question of how are you going to design the various surveys that collect this type of information in a way to get the information you need. Sample size is one factor. It is how the survey is designed, and what are the tradeoffs that you have to consider in any kind of redesign.
I know we are talking about sample size, because the count means each additional bean costs money, but there are different ways of doing things to get the same information.
DR. MAYS: Harvey?
DR. SCHWARTZ: I just had a question. Is there some liaison person with the Data Council that can provide some type of information regarding milestones that might be related to the policy window as it is opened, so that this subcommittee and the committee at large understands the opportunity for the ability to ask the right questions at the right time and provide the right advice when it is really needed. Is that specific enough?
MR. HITCHCOCK: I think we have already had an impact both on the FY 04 and the FY 05 budget with the letter that we have sent in.
We sent two letters. One of them was referred to the working group that Henri chairs. That is the one that has to do with our recommendations we sent forward to the Secretary.
DR. GREENBERG: The March recommendations.
MR. HITCHCOCK: The March recommendations, yes. The other set applies to the Data Council at large, and that is the one about the redesign of HIS and the re-engineering of the DBS. So that is going to go to the full Data Council, probably by way of the data strategy working group. But it is separate from what the data working group has been asked to look at.
DR. MAYS: Andre, can I ask the question, will you or a representative either ask us questions, want more information from us, consult with us as you do this work? How does this work? John, I'm sorry.
DR. LUMPKIN: What I was going to say is that there is an organic relationship between the work of the committee and the subcommittee and the work of the Data Council and the Department. And by us sending a letter to the Secretary, that kind of alerts those at the higher levels, and then it makes its way to the Data Council.
So when the subcommittee makes a recommendation, if they make a recommendation -- because it is the same people that are sitting around this table; they know that we think it is important, but we wouldn't get this far if all of a sudden they said it is really a problem.
We assume that we are kind of of a like mind, but it creates a resonance, so when these budget issues come up, people will think, oh, yes, that is the one that NCHS talked about. So it increases the potential for the funding to occur. It is not really a matter of that committee all of a sudden responding to us, but the fact that they do have to respond gives them an extra piece of leverage in trying to get it into the budget, get it elevated, and so forth.
So it is more of a -- it is not really a hard and fast process, but we are actually adding to the potential of being successful.
DR. MAYS: Olivia?
DR. CARTER: Essentially you are raising the issue more than once, by the fact that the Secretary has said that the working group is going to be responding. He raised that more than once.
Actually, if I recall correctly, there are three entities that are affiliated with the Data Council that would be paying attention to this. One is the working group on racial and ethnic data, and obviously they would have to report back to the Data Council before the document could go forward to the Secretary. The second is, there is a group that is more concerned with the budget, what do they call it, the consolidation or coordination?
DR. MAYS: Survey integration and strategy.
DR. CARTER: Survey integration; and then there is another one that has to do with strategies or something.
MR. LOCALIO: Those last two are in the same group.
DR. MAYS: Yes, they are the same group.
DR. CARTER: So this other group is the one that is most concerned about the budget. What they are asking about is for instance taking a look at this -- I'm just totally brainstorming here -- improve question of data on language. Then the Department of Health and Human Services through the working group, through the Data Council, through the Secretary, back to the National Committee, will say, did you know there are new regulations for the state children's health insurance program that now require language data to be collected. We took a quick look, and this is what we have gotten so far, and the quality is good or not or whatever.
So that would be something that they may want to highlight. We already thought about this, we took care of it, and look what a great job we have done. Those are the kinds of letters that you are going to get.
Now, another opportunity -- because you were asking about opportunities -- another opportunity that came to my attention this morning, because I was on with the Kellogg Fellows this morning, is that there is going to be a Congressional briefing in August on improving health data collection, by the Congressional Black Caucus health brain trust, in August.
DR. GREENBERG: Do you know when, Olivia? Have they decided?
DR. CARTER: Just August, no date.
DR. MAYS: I'm smiling, because Jim and I were just this past weekend at what is known as the tri-caucus. It was the Congressional Black Caucus, the Hispanic Caucus and the Asian Pacific Islander. This issue was on the table in terms of data. They are going to be travelling.
I was there, we were commenting about it. I did talk to some of the Congressional staffers as well as a couple of other Congress people. As a matter of fact, Hilda Saleeze talked about the fact that she tried to introduce an amendment for them to collect data race and ethnicity in -- is it Medicaid or Medicare? Medicaid, I think -- and was shot down. They wouldn't even take the amendment.
So we talked afterwards. Again, it was one of these instances where you should have an awareness of some of the information that we have, to talk with our staffers about.
DR. GREENBERG: Where did this take place?
DR. MAYS: L.A. It was something that was hosted by the California Endowment and the tri-caucus. They had all the California representatives there, Congressional representatives there. Then they put them on a bus, drove them around L.A. to show them disparities, what the health disparities were like. They were inviting people. They wanted them to come to Washington.
What is interesting is, they want more information. So that is one of the things that we need to talk about. I don't know at least through this channel officially how you get the information to them, but they really are trying to put -- as part of different amendments, they really are trying to put in this issue of the collection of data on race and ethnicity. Part of this is they are afraid of what is happening in California, the possibility of the initiative in California. So California was a good place for them to start hearing about this.
Yes?
DR. CARTER: Just a couple of other opportunities. Talking about California, I just wanted to let you know that the California Republican Party is now in support of the initiative. They just joined it in March, so that means they've got deep pockets.
DR. MAYS: Doesn't surprise me. Also, there is this discussion of, maybe they will try and push to have this in November, because in November they may also have a recall for the governor, so that would really turn a lot of people out for it.
So in California, this issue about the collection of data on race and ethnicity is getting very serious, so we are having a lot of presentations. The caucuses are now trying to take this on the road to get people to know a little bit about it.
One of the things that we want to think about, and again, I don't know procedures here, they want information and how we send it to them and give it to them, with things that we have.
DR. CARTER: There are a couple of other issues that they have raised. One is their concern that what went forward with the budget justification with the President's budget had no mention of health disparities, had no mention of minority health, had no mention of Healthy People 2010. So they view -- Congress views Healthy People as being replaced with the Healthier U.S.
When you look at the website for Healthier U.S., it doesn't say anything at all about any differentials in health data, in any way.
DR. GREENBERG: Everything that the committee does is sunlight, is public, it is open. Your hearings, your reports, et cetera.
DR. MAYS: So can I just hand it to them, or do I have to come in some other way?
DR. GREENBERG: Everything almost is up on our website.
DR. MAYS: Well, I was thinking of the Medicaid report.
DR. GREENBERG: Sure, this is public information. If you want a bunch of them sent to people, ask us, we're happy to send them out.
DR. MAYS: All right.
DR. GREENBERG: But anything this committee produces is absolutely public. Even Congress is; they represent taxpayers.
DR. LUMPKIN: As long as it has been shared with the committee.
DR. GREENBERG: Oh, yes.
DR. LUMPKIN: So draft reports that haven't gone to the committee shouldn't be shared. Other than that, everything is --
DR. MAYS: But transcripts up on the web, anything that is --
DR. GREENBERG: Transcripts, minutes, and then reports that have been approved by the committee.
DR. MAYS: Okay. Then I'll follow up on that. I just have a couple more comments, and then we're going to move on.
DR. CARTER: I just have one other opportunity. That is, on April 3, Dr. John Ruffin testified to Congress about the strategic plan to reduce and ultimately eliminate disparities in health. He promises it will be posted on the web for public comment. It is still not on the web, but obviously once it is, then that is another document that --
DR. GREENBERG: His testimony, you mean?
DR. CARTER: In his Congressional testimony on April 3, he promised that it was now completed and it will be posted on the web.
DR. GREENBERG: What is, his testimony?
DR. CARTER: In his Congressional testimony, a five-year strategic plan, NIH strategic plan to reduce and ultimately eliminate disparities in health.
DR. GREENBERG: He is still working on that. That is why it is not up.
DR. CARTER: What I am saying is, April 3 he said it was completed. It is still not up, but once it is up, this is another document that the committee may want to weigh in on, because at least from what I remember when I was working in the Department, one of the discussions was that research dollars were going to be cut elsewhere in the Department, and where a lot of minority health and health disparities research dollars are going to be placed is in the NIH budget.
So it is even more critical, that if there are research priorities that you want to make sure are in the Department's research portfolio, that you take a look at the NIH's agenda.
DR. CAIN: I'm on the research advisory committee, and it is at the Department, it is being cleared.
MS. BREEN: One more thing, just a point of information. NCHS is funded by lots and lots of agencies; it gets its budget. But I work at NCI, and we pay for parts of the national health interview survey, and we put money into NHANES. Different agencies pay for different parts of the survey, so that money can be channeled in that direction, if it is appropriate and it is part of the mandate of the Institute. We would fund the cancer control module, for example.
DR. MAYS: So you could ask specifically for specific types of questions?
MS. BREEN: Yes, that is the way it works.
DR. GREENBERG: It is like a trading partner agreement.
MS. BREEN: That is a way to get into the process.
DR. GREENBERG: NCHS has the capacity to accept reimbursable funds, and to actually carry them over, which does support some of the surveys. The vast majority of what we do is still done with appropriated money.
MS. BREEN: In my experience working with the NHIS part of NCHS, it is far easier to get additional questions or modifications of questions. So if they are longstanding questions, it is harder than if there are newer questions, if you want to change them, I mean. But what is very difficult is changing the sample frame. That is almost impossible.
So in terms of thinking about possibilities at NCHS, --
PARTICIPANT: (Comments off mike.)
MS. BREEN: No, because the sample frame is doled out by the Census, which gives different agencies -- like, BLS gets some for their population survey, NHIS gets some for the national health interview survey, so it is doled out by the Census in a way that will be not too burdensome for any one part of the country.
DR. GREENBERG: That is why the redesign that takes place every ten years is pretty critical.
DR. MAYS: Let me just sum up and suggest -- these are things that I want to make sure get to our work plan or they are on our radar in some way. Can I ask that either Virginia -- you would probably be the first to know when that is available for comment. If it looks like there is nothing there on what is within our charge, not the whole thing, but what is within our charge, which really has to do with data, then if the committee could be alerted to that, then we can determine as a process about commenting and what we want to do. So that should take care of that one.
In terms of the Data Council, it really does sound like Dale and Audrey are there, and John. But some of this is going to be at the work group level. The benefit that you will use those things that have emerged in our hearings, that that is permissible for you to do that and to put that on the table, relative to raising issues and concerns and coming up with solutions to some issues, so I think we are okay with that.
DR. LUMPKIN: Just on that, since I can't make every Data Council meeting, if you let me know when you think it is coming up on the agenda and all, I'll make a special effort to be there.
DR. MAYS: Perfect. So I think that will help. In terms of the first letter, which is dealing with the issues about re-engineering, I think what may be useful, particularly when Jennifer gets here, is to have a bit of a discussion to figure out information, to figure out from her -- I think she may have some sense of where she thinks this is going, and I think it would be useful to hear from her. Then we can make a decision about that particular item. So let's put that on delay for a little bit later.
But again, these are the kinds of things I want to try and do each time, is to bring to the table those things that have been discussed in the meeting.
I want to bring one more thing we have got on our plate today that was discussed in the meeting, for those of you who weren't there. That is, if I can find it fast enough, the quality report. Do we have anything we can share with people?
Can I ask a question, Audrey? This is something I tried to get before, and I wanted to see if I can make this happen. Can -- the people here, members and staff, can they get agenda books?
DR. GREENBERG: We can't do agenda books for everybody, but we can certainly -- if there are any documents in the agenda books that are needed by your subcommittee, we can certainly make copies and have them in their folders.
DR. MAYS: Here is the request I want to make. When the agenda book is done, if one of the staff will look and see those items that have things in them about race and ethnicity, or that pertain to the work that we are doing, if they could pull those out, so that we can go through this update and bring everybody up to speed on what we are doing.
DR. GREENBERG: Sure. I think like with these letters, that was probably done, but probably looking at the quality report, at first blush it may not have been obvious, but there is a recommendation in there on race and ethnicity. Although I thought the quality work group was still a part of the Subcommittee on Population;.
DR. MAYS: It is.
DR. LUMPKIN: The issue is, there are things in this that are hard copy. My guess is, probably most of this is electronic.
DR. MAYS: Oh, yes, that would work.
DR. LUMPKIN: So maybe it can be e-mailed to -- the workbook, to all the staff who work with the various work groups and subcommittees.
DR. GREENBERG: The substantive documents.
DR. LUMPKIN: Yes, the substantive documents, and then people will have access to them electronically.
DR. MAYS: That would be so helpful.
DR. JACKSON: We were talking about organizationally how to keep everyone involved in the enterprise. So we will just make a more definitive effort, as soon as some of the targeted terms come up, just to make sure that the other subcommittee or group is alerted about it.
DR. MAYS: I think in general, if for sure we get what is in the agenda book, it will be helpful for those things that can be transferred. People can delete whatever they want to delete, and they can look at things, because it may be that they would see something that they would want brought up to the full committee that one of us sitting here missed.
So again, that is the value because people are coming from different agencies and different places, that there may be a twist on it that is useful for us to know. So I think that would be great.
What I am referring to, because you don't have it in front of you, is actually that quality, which is a part of populations, has had a set of hearings, and talking about quality. They have looked at the issue of race and ethnicity.
Specifically what it says here is, they are making a recommendation called preview of the recommendations to the Secretary to improve health care quality measurement. It says, for administrative data, add fields to NUCC and NUBC data sets and corresponding 837 claims transaction for the following, and race and ethnicity is one of those.
We had a discussion back and forth today in the meeting about that, whether or not -- I'm not going to do the whole complexity of it, but where it is captured, whether it is captured on wall-net, whether it is captured later, who has access to it, whether it is actually mandatory or situational, whether it really is going to happen if it is situational.
DR. STEINWACHS: Not to mention who would report it, who makes the decision about race and ethnicity.
DR. MAYS: Yes. Somebody said that it wasn't going to change. I decided not to go there, because I thought, see, this is what I meant about how complicated this can be. I thought, if you could just get them to do it, I don't want to introduce the notion of people changing their own race and ethnicity data. Let's not mix it up too much.
But anyway, what the subcommittee has been asked to do is to work with their own group in terms of at least this particular piece on race and ethnicity, to make sure that it is fleshed out in the report in a way in which hopefully it will have an impact.
John was very good at pointing out, for example, in terms of quality of care, there is data. It seems like we just keep getting more and more. So it is not weak data, it is very strong data, in the sense of the relationship between race and ethnicity and quality of care.
So I think we can probably help pull together a segment for the report for quality, as well as -- and we won't be able to do that until quality comes back in September with the report, so we will be able to help with that by September. Then the suggestion was, after that we might be able to follow it up on the heels of IOM having a report, this report coming out. We may have even more to build on, based on the IOM report.
So again, that is on our work plan. I just want to be real clear about the things that we are given, so that we are real clear about the things that we are committing to and making sure we can get them done.
John?
DR. LUMPKIN: Just on time lines, I believe what will come to the committee in September will not be a report that will be finalized. I'm sure that we will allot a significant amount of time for discussion. I don't expect us to have a complete report in in September.
For the IOM, somebody who knew a little bit better the time schedule than me suggested that winter might be a better time line for that report to come out.
DR. MAYS: No, what I saw said fall, but it must mean in terms of feedback.
DR. LUMPKIN: Yes, but that is all the review and all the process.
MR. HITCHCOCK: Since that report on -- we should have some sort of working copy of the results of the workshop that was held sometime in July, with a glossier copy by September probably. The whole report won't be out until probably --
DR. LUMPKIN: I haven't seen a draft of our report. Our last meeting, I think we even talked about having another committee meeting, I can't remember. So this summer before the report gets in any version, it is going to go in review.
DR. STEINWACHS: Would a workshop be of any use to this committee?
DR. LUMPKIN: I think it might be. It might be of interest to look through it.
DR. MAYS: Well, when we get that, why don't we distribute it, because it will come this summer, so we should plan on sending it to people, particularly if you can get it electronically, even better.
Yes? And then we're going to move on.
MR. LOCALIO: I do have a concern that the right hand knows what the left hand is doing. I didn't have a chance to comment on the work group on quality, but a lot of what this session is talking about is dependent upon the effectiveness of the work group on health care quality, is that correct?
DR. MAYS: By this group, you mean -- ?
MR. LOCALIO: The Subcommittee on Populations is really dependent upon the success of the work group on health care quality to ascertain, for example, what is the variation in health care quality, et cetera, across population subgroups. Does that make sense or not?
DR. LUMPKIN: But I think we need to differentiate between health care quality and health status.
MR. LOCALIO: Both. I understand the distinction. Both are covered in the health care quality measurement. Do you agree?
DR. LUMPKIN: I think that that work group is more focused on health care quality and less on health status?
DR. GREENBERG: Which work group?
DR. LUMPKIN: On quality.
DR. GREENBERG: Right now, Bob Hungate really wants to move more to health status.
DR. STEINWACHS: Yes, he does.
MS. BREEN: What is the data source for that?
MR. LOCALIO: So it is both.
DR. GREENBERG: But the testimony that they have received in the panels and everything over the last several years when Kathy Coltin was chair were really focused on health care quality.
DR. MAYS: I think it is even more important to have this discussion, in the sense that that is what we are looking at. So it is like we are making proposals. As you know, it is one of the things on the agenda, to talk about, they may split off from this group. We need to get greater clarity of -- we have had recent hearings that they could actually benefit from.
So I don't know whether or not we are -- and believe me, I'm not asking to ask for more work, but we are separate enough at this point to do the split, unless it is really clear what the differences are. But at our hearings, what we have been driven by is the issue of health status, health behaviors, and access to care. You go to our beginning hearing and you ask about the question on data on race and ethnicity, it really has been in those domains.
DR. GREENBERG: I think you raise a very good point which did not fully crystallize for me until right now. In the past, they really have been -- and even their report is focused on health care quality coming out of the President's report on health care quality and some of the IOM -- all that.
But Bob's interest in outcomes and in health status as an outcome and in health behaviors, how that affects health and all that, is such that it could be very duplicative. It is not just looking at disparities, but then, you're not, either.
DR. MAYS: Right.
DR. GREENBERG: So I think you need to talk about this together.
DR. LUMPKIN: I think this is something that we need to discuss. We have time at the executive subcommittee retreat. My thought as just one of the members of the committee is that to the extent that he is interested in health status, even access to care, that really ought to be here, and quality is focused at, once you have access to care, are you getting quality care, are you getting disequitable care. I think that aspect of disparities needs to be looked at.
But I would see the quality committee being a little bit more focused. That is why we need to have a discussion. The more health status stuff I think may be better handled by this subcommittee.
DR. MAYS: I actually have it as one of the last things we were going to discuss, because for me, I want to be prepared in terms of having the discussion of representing something. I don't want to go in and represent something and then find out everybody else is wanting to do something else.
So for us, it is part of our discussion to have great clarity as to where we see ourselves going, and then I come in and I represent that discussion to you all. But it is clear we do need to do that.
Then we are going to move on. Go on.
DR. STEINWACHS: I think part of the differentiation could be around quality of care related to provision and receipt of services, where the focus on population and health status doesn't necessarily lynch to this idea that you are receiving services.
I think Bob might argue that it is not just traditional medical care services, but the service definition can be broader in terms of health services. So I think it does merit -- I agree very much with what you're saying. It needs some definition so that we are not --
DR. LUMPKIN: But there are a number of components to that discussion. One is, isn't there in fact enough work in the area of the more narrow definition of quality, that that work group has their hands full. Then --
DR. GREENBERG: Yes, except that really is less his interest.
DR. LUMPKIN: Right, but that is less his problem and your problem than it is my problem, which is trying to get that committee staffed, or get the work group staffed. But also to the extent that the broader issues come in, then do you expand the scope of that committee, or do you actually begin to look at more of a merger between that work group and the subcommittee. Those are the kinds of issues that we have to address.
It is related to individuals' interests, but where do those interests get best deliberated is the challenge for the structural discussions that we will have tomorrow.
DR. MAYS: I think it is also the challenge of -- and again, that is where I am trying to take us. It is not just the topic, but it is the effectiveness of delivering what we learn about the topic. Are we better having a marriage here on something, or are we better being separate? Is there when it is set up implications that one piece can't be done as well without another piece as a complement to it.
I do think that even with the narrow definition of what he is interested in, we clearly have to come back and say the committee's best interest is served that making sure that when it delivers reports or whatever, that they are going to be able to be used.
So it is not just, is there going to be enough work, but will the outcome of that work serve us to move whatever the agenda is we are trying to move. Sometimes things that are real narrow do, and sometimes they don't.
Again, at this point I haven't thought this through, because I just learned this. I'm just saying I think that is part also of the discussion.
MS. BREEN: One thing, the federal government seems to be dividing things between access on the one hand and quality on the other. Harvey's organization, AHRQ, has the two prongs, and this has to do with Healthy People 2010.
DR. MAYS: Don't say that like that.
(Simultaneous discussion.)
MS. BREEN: And it has to do with elimination of health disparities and providing quality of care for the two Healthy People goals, which within the federal government, maybe the Congress has left them behind, but they are still thriving in my agency and I suppose yours, because of the way this is going on.
In fact, NCI is taking the lead. Dr. von Essenbach, who seems to have a personal relationship with the President, has organized a cancer health disparities progress review group. For that progress review group, we are using elimination of health disparities as one of the critical goals, and how can we get there, and we are trying to develop a road map for that.
DR. SCHWARTZ: I'll just take a few seconds. I think you have already had a lot of great discussion. It sounds like tomorrow, the structure will be discussed. But I guess there might be other options other than stand-alone and marriage. There could be kiss and ride or cohabitation. There is a precedent at the committee where there have been in the past special joint sessions of two subcommittees. There might be times when --
(Simultaneous discussion.)
DR. SCHWARTZ: My point is, you don't have to nail everything down instantly. It looks like you have some time tomorrow, and you could leave open some room for other types of arrangements, perhaps.
DR. MAYS: I think this is useful. John, this is the type of discussion I wanted to have in the group, so I'm glad you were here to hear it. Last one on this, and then we're going to move on.
PARTICIPANT: I think we should ask the Census Bureau to provide information on how they are redesigning the current population survey, because I think that redesign affects all the other surveys that are done by other agencies.
MS. BREEN: They get first dibs at the primary sampling units, so they are the first ones allocated, aren't they?
PARTICIPANT: I believe so.
DR. GREENBERG: I think so, too.
DR. MAYS: The Census Bureau, just so you know, there are two different aspects of the Census Bureau that have asked to be able to be a part of this subcommittee. So particularly since the hearings have come up, the people that work -- there is a term for their group, the racial ethnic group, there is a term for their group. They have asked to be able to participate, so we are going to explore that a little further.
But in terms of a presentation, I think we can put that on the agenda.
DR. SCHWARTZ: Getting back a little bit to the previous discussion, the Census Bureau also has advisory committees. There might be some ways of interacting with them.
DR. MAYS: They actually asked if they could have a joint meeting with us. Once they found out about the hearings, once they heard some of the work we were doing, they really were pushing.
DR. STEINWACHS: So what did you tell them, Vickie?
DR. MAYS: I told them I had to get back to them. We have to get this together before we keep expanding, but they actually have for example -- Jim, you may know about this -- they actually had for the Asian, Native Hawaiians and other Pacific Islanders, I don't know whether they call them hearings or discussions. They have a set of recommendations they want to bring forth, they want to share those recommendations with us. They want us to share materials with them, so that they can get things done.
Apparently it is the same things for the other racial ethnic groups at the census. So I now have individuals from two different racial ethnic groups say, we want to be here.
DR. GAUS: They meet twice a year. The last meeting was in May. Their next meeting is probably going to be October. They usually meet here in Alexandria or somewhere. It is called REACT.
DR. MAYS: REACT, thank you, REACT. It was a cute name, yes.
DR. GAUS: There is one for each of the five groups, so there is a separate one for mental healths and Pacific Islanders. Then within the Census, there is also a race bureau and a Hispanic bureau.
DR. MAYS: I do think again that these are pieces that help us and that as we do our work, to have those individuals sitting at the table, to be able to ask them for information, and I think we will be able to get it.
So again, I will work on whether or not we can bring them forward, but I'm for it. I don't know how other people feel about it, but it makes the information flow a lot easier. Also, I think it makes it some coordination in terms of our ability to impact upon the Census.
Agenda Item: The Report on Populations
Let's turn now and talk about -- those were all the updates; I can see even updates take awhile, but I want to talk about the report, but I don't want to talk about it as the report.
Let me tell you why I am saying what I'm saying. I was glad to see that we had some time together today. The reason is that I want to step back a little bit and try to engage in a process that is actually going to facilitate what I think is the development of a working group.
Poor Gracie; I think I was like every other day, Gracie, who is coming? Make sure everybody knows, because I wanted to try and have as many people here today as possible, so that one, we can know who we have, what expertise we can have at the table.
We need to drop back for just a moment -- and I think I was really impacted upon, not only by being at the tri-caucus, but just a couple of other situations, where it is really clear that we have a lot of information, but I don't know that we are packaging it and getting it out in a way to be the most effective in terms of it being implemented and it being able to make a change.
One of the reasons I wanted Jim to be here today is because he is a policy person, so we have people here who are policy people. I think it is very useful to us to actually have people who are policy people, so that we don't just get caught up in writing the reports, but that we produce a document that has the possibility to bring about what it is we want to bring about.
So I want to step back today and not focus on editing little pieces in the report, but I want us to get a sense of where it is we want to go, what we think will be solutions and suggestions that might actually be workable, and then go back and do the report. My notion is, we can sit down with the consultants and work on the report and be a lot clearer about things, where they don't worry about wordsmithing, they worry about impact.
I think you have a little piece of paper here that says, discussion points, looking back and looking forward. One of the things that I also wanted to recognize is that we are in transition. We had four members that transitioned, fairly senior members, many of whom were here for more than one term, and we have new members. But we have never taken time -- you all come like we are racing through something.
Today is the day where we are just going to talk about what went on at the hearings. We want to talk about what we see as being the significant issues, what we think we can solve in terms of recommendations. I think what that is going to do is bring us back to a framework, and then we can worry about the specifics of the report.
But I think right now, I want everybody on board. I want you to be a part of the group. I think racing through isn't going to make that happen.
I want you all today also, particularly those who are new, who are just joining us, spend a little bit telling us what you do and what your expertise is, so that we know that when we are working on something, and particularly as you can see, everything is always yesterday sometimes, it feels like, in terms of writing something, that we know who to call upon to ask you, can you read this, can you look at this, can you give me a suggestion, can you help us, as opposed to, we know your name and we know your agency. Let us know a little bit more about what your expertise is.
So I want to take some time and do that. The way I would like to start is by actually talking about each of the hearings. I'm not going to sit here and lecture, but there are several of us who were at the hearings, and I want to go through the questions. Why did we have that hearing? Why did we have that particular population? I want to put us back in the framework of why did we do this, what did we hope to accomplish, what did we learn that is new.
Now, there is stuff that is old, but I want to really try and keep us focus on what did we learn that is new, and what are the specific actions that we would like to see happen as a result of what we heard at the hearing.
And more importantly, because this is where I feel like we are getting lost, who are the key players. Sometimes, only sending a letter to the Secretary only moves it in a certain way. Should we for example be sharing these things with NIH, NCHS? We talked about this before, and I think we lose sight of it.
So as we do each hearing, let's talk about that. Then we are going to step back and do our reports and what have you.
The first hearing we had was a population hearing. Olivia, do you want to talk about the population hearing from your perspective, because you were there? I'm going to ask everyone to participate.
DR. CARTER: Okay. It was almost a year.
DR. GREENBERG: Was that the one in January?
DR. MAYS: It was February, 2002.
DR. CARTER: In February 2002. We did have someone come from Hopkins to talk about socioeconomic status data, so it wasn't just talking about racial ethnic data. So I think that is important to mention.
We had a mix of advocacy groups that attended. Actually, it was fairly good attendance. I don't know how many people were sitting around the room, but in addition to the ones that were testifying, we also had people around the room.
DR. GREENBERG: Eight hundred.
DR. MAYS: Pardon?
DR. GREENBERG: Wasn't that room 800?
DR. CARTER: Yes, it was quite a large turnout.
DR. MAYS: I was going to say, I think ultimately in terms of signups and stuff, we had about 158 people, is what sticks in my mind, and we got a good representation for agencies, both within the government and outside. We invited -- the way in which it was set up was, we had whoever the data originator was, so the data sets were national family growth, we had -- I should have brought the agenda.
DR. CARTER: NCHS, NHANES. We had the medical expenditure panel. It is on page four of the draft executive summary. On page four it says the subcommittee heard from representatives of the Department of Population-Based Surveys, provider based surveys and meta data systems. It certainly was not a complete census of all the data systems that are there, but examples of these three different types of data systems.
We had the medical expenditure panel survey, which is at the Agency for Health Care Research and Quality, Medicare current beneficiary survey, which is Medicare and Medicaid services, national survey of family growth at the National Center for Health Statistics, and the behavioral risk factor surveillance system, which is an activity focused on prevention.
Also, data users that were paired with the folks making the more technical presentations about the details about the surveys. The data users included a private family foundation, a consulting group at the Johns Hopkins University, and that was the socioeconomic status expert that I was mentioning.
DR. MAYS: Wait, there is a question.
MR. LOCALIO: Is there a transcript of this?
DR. MAYS: The transcript is on the web. You will have difficulty finding it by date, so we had several of the data sets, typically population-based. All of these data sets are federal data sets. The purpose was to have --
DR. GREENBERG: The behavior risk factor surveillance system is actually state based.
MS. BREEN: But CDC coordinates the whole thing.
DR. MAYS: The purpose was to have the data person there to tell us about what the data set had the capacity to do, the data users to tell us whether it did what the people told us it could do, and then we of course had a lot of participation by the audience.
What did we hope to accomplish in that particular hearing?
DR. CARTER: There were actually specific questions that were asked of the participants.
DR. MAYS: You don't have to review the questions, but just in general, what did we hope to accomplish?
MS. BREEN: I think we wanted to see whether our federal surveillance system was comprehensive enough to be able to measure every racial and ethnic group that OMB mandates us to do, particularly the elimination of health disparities within those groups.
DR. MAYS: And what was driving that were two things, Healthy People 2010, because we know that there is going to be a mid-career review, and so we want to know in terms of the mid-career review whether or not we are going to be able to say anything about disparities, for which groups, if there are groups we can't say anything about.
The other thing that drives it is that for Healthy People 2010 the targets are often set by these population-based data sets. The concern is, do we have sufficient information for racial ethnic minorities if population-based data sets, the targets that are being set and the goals that are being set in Healthy People 2010 will indeed be able to represent all the racial ethnic groups.
So that is part of what was driving us to have that particular hearing.
Yes?
MR. LOCALIO: A question about definition. Are populations in racial and ethnic groups defined both by race and ethnicity and geography?
DR. MAYS: Who?
MR. LOCALIO: In any of these.
DR. MAYS: I don't think it is by --
MS. BREEN: That issue came up more clearly when we looked at states, because a lot of population groups are concentrated at different geographic areas in the United States, so the federal surveillance sometimes doesn't do a good job on some particular group, whereas a state database would do a lot better job.
I'd say that issue was more directly addressed in the second hearing, which was on state databases.
DR. MAYS: When we talk about this state data, that was actually part of what drove us to listen to the states, because first of all, their issues are very different than at the fedreal level, but also to get a sense of, if at the level of the federal government's population-based surveys they are not capturing information on some racial ethnic groups, is that information being made available in some way at the state level, and what are the state's issues about being able to do it.
MR. LOCALIO: My point was a little bit different. In other words, disparities can be cross classified. It may be that you have a particular ethnic group of one location in the country that you have defined, and the same ethnic group in another location doing very poorly.
That is the problem that has different solutions. Am I making sense?
DR. MAYS: Yes.
MR. LOCALIO: So I was always under the impression that to look at racial and ethnic disparities, you had to look at several dimensions at the same time. You have to cross classify your data to look at what is happening in Florida to Cuban-Americans versus Southern California to Mexican-Americans, although some people would group those together very differently.
DR. MAYS: See, I think that is the issue. At the level of population-based samples, the subgroups are almost impossible to do, except when there is oversampling. Most often the oversampling is done for blacks. That is what they are called, blacks; they often don't always break those down to African-American and other black subpopulations.
So I think you have hit upon what is one of the problems. That is, that we will only end up with an N that is large enough to talk about Hispanics, to talk about Native Americans.
MR. LOCALIO: Native Americans, the people who run the casinos in Connecticut are very different from the people who are in Shiprock.
DR. CAIN: But I think the cross classification is more than geographic. It may be SES that you are really trying to get to.
DR. MAYS: Those are the questions, right there. Those are the questions that we raise as to, in these data sets, can you do that. Of course, what we know is that for most of them, you can't. I think that is part of why a recommendation will be to do these target-specific surveys.
I saw two hands. Olivia?
DR. CARTER: I can direct your attention to page six. What you just mentioned, the issue that you are raising, was something that was brought up during the hearing, and you summarized some of those things that came up during the meeting.
For instance, the second one said the Department should be encouraged to apply geographic identifiers. Then we also -- the fourth one talks about data on subgroups. So these issues were discussed during the hearing, were captured in the summary, and also were addressed in the draft recommendations.
DR. STEINWACHS: Part of the hearing was on socioeconomic status and measuring it. Is there a consensus about how to measure that?
DR. MAYS: The question we were asking was not about how, but we asked if they measured it. That was the big problem, that it is not measured, unless the only thing that you focus on is income.
Part of what we were attempting to piggyback a little bit on is that you all have had a meeting about -- the Office of Behavioral and Social Science Research had a meeting. In that meeting, that is what they were trying to discuss, is some of the definitions and some of the issues.
So we went to the survey people and said, do you measure it at all. Some of them don't.
DR. STEINWACHS: Part of the reason for raising it is that income is the traditional American way of getting at it, but there are people who come from middle class backgrounds who due to illness like mental illnesses end up being very poor. So there has been an issue of what is your background.
DR. MAYS: Social status versus -- yes.
DR. STEINWACHS: It seemed to me we never had a very satisfactory way to do it. Income may be what we decide socioeconomic status is, but that is really economic status, and doesn't necessarily drive the social part of that. It would be useful to have on this working agenda here what we are looking for when we talk about socioeconomic indicators if we are going to cut the cost of race and ethnicity with those.
I assume that things like income and education are varying somewhat and maybe don't mean the same thing always.
MR. LOCALIO: Don, I want to generalize on what you said. Geography is a second dimension. There is another dimension, and that is the longitudinal dimension. You can look at a cross-sectional comparison of health status, whatever you want to call it; an additional question is what is happening over time, is it separating or is it converging. If so, how much, among which subgroups.
DR. MAYS: If I can comment on that before you go further. All of these in the ideal are great. The problem is to have the data to be able to --
MR. LOCALIO: I said this in November, I said this in February, yes, sure, if you don't have the data you can't look at anything.
DR. MAYS: Let me ask you the question then, because this is the next piece I want to deal with, particularly in terms of the population-based data set hearing. What do we want to see happen? What are the recommendations that you want to make?
We have a lot of specific ones, but just in general, I want to get a sense of what you think. We are not going to give anybody 67 recommendations, I'm here to tell you that today. I learned my lesson. I'm a quick learner. So what do you think are some of the more important things that you heard at these hearings, those of you who were at the hearings, about what we should do? What are some of the more important recommendations?
I think what we have are variations on themes. What I gave you in terms of the report was just the beginning part, where there were some overarching themes. But what I want to do is think about, if you only have five things you could do at the most, what would you recommend, based on what you heard at the hearings?
Nancy?
MS. BREEN: I would have for every single state and territory in the country --
DR. MAYS: This is very comprehensive.
MS. BREEN: -- an HIS-like, with a similar sample size to the HIS as it currently stood last year -- it's getting cut -- I would have that kind of survey for each state. Eventually I would like to see the longitudinal, but I'll let Russ --
DR. MAYS: Explain that to me, just so I have a good idea.
MS. BREEN: Right now, we have the national health interview survey.
(Simultaneous discussion.)
MS. BREEN: -- estimates within the state for each state for the three largest population groups within the county.
DR. MAYS: There is a truth there, but I hope there is a data fairy too, you know?
MS. BREEN: We need a data lobby, that's what Ed Sondik says.
DR. MAYS: Susan?
DR. QUEEN: I would go back to the idea of special studies. Reynard was talking about HANES light.
MS. BREEN: The rolling population?
DR. QUEEN: I know these large surveys are going to change their samples. It is never going to get to the point with the current HIS or the current HANES that you can really look at some of the smaller populations. I think that we shouldn't eliminate the idea of considering the special target, special studies.
DR. MAYS: I'm just going to jump the gun here. If I had to say what I think has come up for each hearing, it is probably that. That is the one recommendation that I think cuts across all of the hearings, is the sense of, each has special needs and wants a special kind of targeted survey. We heard that at the state level, we heard that in terms of the specific populations that we are hearing from. So something like that I think definitely is an overarching thing.
A couple of other recommendations? Yes?
DR. CARTER: To tag on what you were saying, if you look at the bottom of page seven and the top of page eight, I think that kind of captures what you are talking about.
DR. MAYS: Anything else that you heard that you think is an important recommendation for the population-based hearing?
MR. HITCHCOCK: Geospatial data, geocoding, better use and better organization of what we have available from Census and other sources, to look at contextual factors, both with regard to SES and with regard to environmental -- social environments and chemical environment, I guess.
MR. LOCALIO: So you mean everybody's block group or something like that?
MR. HITCHCOCK: To the extent that you could, yes. There are places where you can do that, data centers and so forth. You can learn a lot of context.
MS. BREEN: Another thing that came up especially in the state hearings, but in the other ones as well, was that some localities or states, or using your idea of the special studies rather than just every state systematically, have subpopulations which are not part of the OMB grouping, or they don't pop up as part of the OMB grouping, that are important in that area, and that need much better measurement than they are currently getting under either the state or the federal surveillance system.
DR. MAYS: Do you think that based on the hearings we have that we would be able to identify who those are?
MS. BREEN: To some extent. I think we could give some good examples. I don't think we could comprehensively identify all of them.
DR. MAYS: I think that is something that we probably should do, to put that on the table. That I think is probably better done for the state rather than the population-based.
MS. BREEN: They are all population-based. You mean the state rather than the federal?
DR. MAYS: Yes, I'm sorry, state rather than federal, yes.
MS. BREEN: Yes.
DR. PAISANO: That brings in another issue of the acceptability and the recognition of official data, that is comparable among everybody. What the Census Bureau does is basically official data, and nobody ever really questions the sample design or the procedures for collection, or whatever.
Collecting data for not the major -- the subgroups of the major categories outlined in OMB is very critical. If you look a the American Indian population, the perception of them, the tribal data is more important than just the general classification.
MS. BREEN: So standardization. The other thing, back to my recommendation of the state data, to my mind, this data would be collected at the state level in a way such that it could be pretty easily weighted and aggregated up to the national population. We don't want 28 surveys going on here, it is not efficient. We are never going to get that.
Right now, we've got at least three surveys that can be aggregated well or poorly up to the national level, and all the money that is used for those surveys. Actually, you've got a couple, too, at AHRQ.
MR. HITCHCOCK: I'm not sure what you are referring to.
MS. BREEN: I was thinking of the medical expenditure panel survey, but it is doing a pretty different thing than the NHIS or the NHANES is. I was thinking of the NHANES, the BURFIS and the HIS, which are three major national surveys, ultimately.
DR. SCHWARTZ: I wasn't at the hearings, but I'm not really sure where to go. I understand that there could be a problem in not having an official definition or official data, but is that problematic for a long run vision, are there needs for special studies that might help you get there as well? I don't know.
So I don't see why that shouldn't be on the table if that came across at the hearings, that special studies are important, even if there aren't official data to support all of them.
DR. PAISANO: I don't disagree that special studies are important. I do agree with that. But I was just trying to bring out the aspects that concern some of the tribes. If they do their own data collection, sometimes they say we can't accept that because we don't know your methodology, how you are doing this, how you are doing that.
DR. MAYS: For example, that stuff does not feed into Healthy People 2010.
DR. SCHWARTZ: You mean if it is not official.
DR. MAYS: It is almost like, if it is not at the federal population level, it doesn't --
DR. SCHWARTZ: But can those studies get you there? If you don't have a way of getting there, if you can't fund 50 state surveys, are there some special studies that could be a stepping stone? It depends upon whether there is a long run vision, and no one would advocate helicopter research. No one would advocate that. The tribes wouldn't like that definitely.
(Simultaneous discussion.)
DR. MAYS: Like for example, if CHIS told us wonderful things, CHIS data still would not be used to set goals for Healthy People 2010, because it needs to be only national.
MS. BREEN: It is going to be used for monitoring. We are using it. NCI is in charge of monitoring cancer outcomes. We are using it.
DR. MAYS: But what this means is that things can be done. But aren't you doing analyses in which you are really trying to determine the similarity and how generalizable the California results are to national?
MS. BREEN: Yes. We looked at Native Americans and we looked at Asians, and they are dissimilar, so we are not going to generalize to the whole national population for those groups. They are California Indians and California --
DR. MAYS: Let me ask us our next question and move us along. Who are the key players, in terms of trying to influence population-based studies? Yes, a letter and things will probably go to Tommy Thompson, but who does this? Who do we want to be able to change things?
MS. BREEN: Mr. Policy? There are a lot of people who are in high levels of administration and DHHS who are not very attuned to population health. This is something -- when Dr. von Essenbach came to NCI, he is our new director, he is a clinician, and he is open to learning, but he came in without any idea of what population health might be, or what we might be trying to do, by looking at the entire population and the going upwards, rather than just looking at individual clinical entities.
So I'm not sure who within DHHS would be our ally. Certainly Reynard Kington, who is the deputy director at NIH.
PARTICIPANT: (Comments off mike.)
MS. BREEN: No, but it is this locks in the water idea that we talked about.
DR. CAIN: Reynard is certainly an ally, but writing a letter to him isn't going to do anything.
DR. MAYS: The letter goes to the director.
MS. BREEN: How about Zerhouni with a copy to Reynard?
DR. CAIN: Reynard or I will have to answer the letter.
DR. MAYS: Since NIH is a major player, how would we influence NIH to take up some of the issues that we have described?
DR. CAIN: NIH is already doing a lot in that area. What I am interested in, saying that the surveys don't count, do all of our millions of dollars of money that we put into surveys not go into Healthy People 2010? So James Jackson's studies and none of those go into it?
See, that is where we have huge investments in major surveys, population-based national surveys, looking at special subgroups. So maybe having that that is already there, as part of the calculation, as part of -- maybe it is influencing HHS to include those kinds of things.
DR. MAYS: Maybe the recommendation is to think about broadening the inclusion of the surveys that are used that help to establish some of these goals.
DR. GREENBERG: These are national surveys, you are saying?
DR. MAYS: Yes.
DR. CAIN: Yes, and I can understand why maybe they don't use state surveys.
(Simultaneous discussion.)
DR. GREENBERG: These are all done under like grant mechanisms?
(Simultaneous discussion.)
DR. MAYS: -- talking about the NIH funded study. It is called black America in the something.
PARTICIPANT: -- Hispanic, white.
DR. MAYS: Yes, exactly.
DR. GREENBERG: For a few members of the Data Council, this is a bone of contention, but basically surveys that are done under grant mechanism are just not on the radar screen of the Data Council.
DR. STEINWACHS: They are owned by the government, is the sense, isn't it?
DR. GREENBERG: They are not part of survey integration.
(Simultaneous discussion.)
MS. BREEN: It is not so much ownership.
DR. STEINWACHS: It is also control.
MS. BREEN: No, no. Some of these -- well, the surveys that you mention have been ongoing for a very long time under a grant mechanism. Jackson has done his again and again. But very often they will get done once and then they are never done again. I think that is the thinking of surveys that are done under grants, is that they are not permanent and ongoing and institutionalized in the same way. But where they are, I think they should be brought in.
MR. HITCHCOCK: Monitoring the Future has been done for years and years and years. It is used by the Department certainly in many areas of policy setting. I don't know whether Healthy People 2010 uses Monitoring the Future or whether they use the national household survey on drug abuse.
DR. MAYS: I think they do use the national household survey on drug abuse.
MR. HITCHCOCK: I think they may very well. Healthy People is about the only thing that drives the Department in terms of setting policy or goals, and Monitoring the Future and some of the other surveys are --
MS. BREEN: There is a volume called Tracking Healthy People 2010, and that is where all the data sets that are officially used are listed. So it strikes me that in the mid-course review in 2006, there is probably an opportunity for updating that as well as the rest of it, isn't there? That is when goals that can't be measured or monitored will be deleted. So obviously, that is a time when we can add in --
DR. MAYS: Right, that is what we are trying to avoid.
MS. BREEN: Right, but if data sets like the Jackson data set can be brought in and used as a tracking mechanism, then that may save some of these goals and objectives that would otherwise be discarded, because there is no measurement venue in the data sets that are being collected by the tribes. That is another thing we should have a more systematic knowledge of.
MS. BURRELL: What has come across all of these hearings are data comparability and standards. Perhaps the way those big data sets are collected aren't compatible with the HIS and et cetera. So that is one thing to think about.
But the hearings have all said that we want the federal government to give us technical assistance and guidance in collecting the data, and analyzing and disseminating data, and states especially said they wanted more emphasis on ethnicity rather than race.
MS. BREEN: Which is really at odds.
MS. BURRELL: Yes, but that is what states said they wanted. I didn't attend that hearing in February, but I have read the transcripts, and the regional surveys were stressed, special studies, different methodologies were stressed.
To partially answer your question, if it ever gets funded, the national children's study will be a 20-year longitudinal study. So budget is a primary concern. So how do you focus attention to budget to make sure that happens?
DR. GREENBERG: Without losing something else.
MS. BURRELL: It is a contract, so --
DR. GREENBERG: -- pregnant women, right?
MS. BURRELL: No, it is a combination of things. I'm on the study assembly and on one of the working groups, and they are designing it, and it is to be a contract, at least at this juncture.
DR. GAUS: So who decides what gets included as an official data set?
MS. BREEN: Healthy People 2010. Would that be compatible?
(Simultaneous discussion.)
MS. BURRELL: But those are steering committee at a much higher level than they made recommendations to.
(Simultaneous discussion.)
DR. MAYS: I think it is interesting, we are taking a long time on this, but it is really probably very important. Do we have, Marjorie, the possibility of -- do our letters always go to the Secretary?
DR. GREENBERG: The letters always go to the Secretary with a copy to the Data Council. And of course, all of the agencies are on the Data Council. On rare occasions, like when the comments were specifically on the health care quality report, then those comments were sent directly to AHRQ, because they were the ones who had asked the committee to do it.
But in any event, if you have recommendations that are really relevant to a particular agency, you can always cc those directors as well.
DR. MAYS: I think this Healthy People 2010 decision about what is used -- because there is so much money and resources that follow it, that generate -- like REACH and all this other stuff that is really important, if there is a way to say -- for instance, the NIH has data that can be considered. I understand this issue though.
DR. GREENBERG: I think it would be good to have somebody come in and talk -- it could be on a breakout, but however these decisions are made. I know who carries them out, Richard Kline and his group, but I personally don't know exactly how these decisions are made. So it would be good to talk with them and find out how these decisions are made. They go searching under rocks, et cetera, for data. So if there are data that could qualify, there has got to be a good reason why they are not using them. It might just be they don't know about them. That's possible.
DR. MAYS: I was just going to say, what I think we should do is try and set that up. Virginia, I think it would be critical to have you there, so that you can talk about some of these data that are funded by NIH.
There are tons of publications and past peer review. It may not be that they do the same kind of decision making that NCHS does -- I know this for a fact -- in terms of some of the decision making, so the comparability issues may be a little different.
DR. GREENBERG: Whether it is generalizable is he issue.
DR. MAYS: Yes, that is what we should do.
DR. CAIN: We have the surveillance agency, that is clear, so we are not necessarily going to have repeated measures over time or a longitudinal study on some of these. But I'm sure there will be pieces of information that you won't get anywhere else.
DR. MAYS: NIH has done enough of them that you really could over time do it. If we just took mental health, you could do ECA in the '80s, NCS in the '90s, and now these specialty studies, and each one has talked about racial and ethnic noise. Not all of them, we will get more data, but even in the inlays, you are not going to have all of the Asian, Native Hawaiian and other Pacific Islander groups. David Tagucci only took I think two, Filipinos and I can't remember what the other one is that he has. But there is enough there that I think that it could help in terms of the Healthy People process.
Can we talk about the states? I'm sorry.
MR. LOCALIO: Is it an issue that these surveys are not available, the data are not shared?
DR. CAIN: Most of them are publicly available.
DR. MAYS: Starting now.
DR. CAIN: No, a lot of them actually have been for years.
DR. GREENBERG: Actually, Jennifer may have an answer to that.
(Simultaneous discussion.)
DR. MAYS: You're right, now that I think about it, because the ICPSR, a lot of them are archived in ICPSR. So they are actually available.
Welcome, Jennifer.
DR. MADANS: I'm sorry I'm late.
DR. MAYS: No, we understand.
MS. BREEN: The thing I was going to ask in followup, the American Indian data sets, the tribal data sets that you had brought up, are there population representative data sets that are available that should also come to the attention of Healthy People 2010 on health, to measure health disparities and access to health care and stuff?
DR. MADANS: Right off, surveys on health, I can't think of one right now.
MS. BREEN: Because you mentioned it before, and I wasn't sure if you meant that some surveys were available that were being missed, and not being used as sources of information, or if there was some expert that we should be talking to who would be able to help us with this.
DR. MADANS: For surveys on health, or any kind of study, I really can't think of any.
MS. BREEN: So the California health interview surveys are probably our best bet for rural and urban, because we don't have robust tribal data.
DR. MAYS: There is administrative data which I think IHS does well, in the sense of collecting it through their clinical care system. But in terms of health status data that is population-based, it really is going to come down to if some of the states have done it. I think there is a publication, and I've seen older ones on IHS. But those all come from use as opposed to generally population-based. So I don't know of any.
MS. BURRELL: And the mortality data in the reports are based on the vital event data from NCHS.
DR. MAYS: And they have the highest misclassification rate.
I think this has been good, to give us again a sense of what is important, what went on. The state, I think we almost alluded to the same thing in the states. Audrey gave you almost a summary of what we heard at the states, which is that they are more concerned about ethnicity than race. That is really contrary to what is at the federal level. I think we need to think about what we want to do with that. But that is what helps the states.
Also, there is an inconsistency. That is the other issue. If you really look at some of the state data, there is an inconsistency around the definitions of race and ethnicity in terms of how people are classified. So it doesn't help us even if we want to compare at the state levels.
The states do benefit. I think we do hear that BURFIS is good in terms of the states, and let's keep BURFIS going, and that they can add for example questions to it, their own modules to it. So that is very important to support it.
DR. STEINWACHS: Does that have a fixed definition of ethnicity and race? CDC defines the core.
DR. MAYS: They follow the OMB. The states while they can add other questions. Remember, usually what we talk about is the minimum; one can go and generate it beyond that. If the state can do that, that's fine. It is just when it gets reported down, in terms of the OMB categories.
What else? Is there anything else at the state level that you thought was important?
DR. LENGERICH: I think it is important also to recognize the diversity. I think we heard that at the hearings as well, not only the diversity, but also back on in conjunction to get funding for the re-engineering of the vital statistics.
DR. MAYS: Yes, that is a major issue. I'm sorry, I'm not as good at vital statistics, so sometimes I lose that part. That is the other big issue that came up, is not only the re-engineering, but it is also issues of training to get more accurate data that came up about, is there any way for CDC or somebody to train the funeral parlors, all these different people that collect data in terms of vital statistics.
(Simultaneous discussion.)
DR. GREENBERG: As opposed to the cause of death data.
DR. MAYS: Yes, the data on race and ethnicity. What happens is that the people -- for mortality, so the people who collect it, it would probably be very helpful to give them a sense of why it is important to ask -- to not just peep in the casket and say, okay, I know what this one is, to help them understand how to ask family these questions.
Also, asking those questions raises a lot of issues sometimes about parentage and all this other stuff, so you have to be very careful too in terms of asking those questions. Then at the level of birth, I don't know quite what to do, but in some instances it is determined by the race of the mother as opposed to having both races.
DR. MADANS: Tabulated by race of mother.
DR. MAYS: I'm sorry, you have them both.
DR. MADANS: You have the race of mother and the race of father.
DR. MAYS: But recorded by the mother, right?
DR. MADANS: How it is done in the hospital varies, but there is a worksheet, and it is the mother who signs it, but if there is a partner, they usually are there. But if you look at the data, the data are tabulated by race of mother, not by race of child. There is no race of child on the birth certificate except for one state, Washington. But you can tabulate by both race of mother and race of father if you get the file. It is on the data tape.
DR. MAYS: Yes, you have to get the data tape.
DR. MADANS: Race of father is missing in about 18 percent of the cases.
DR. MAYS: But anyway, so those are the issues that I think came out at the state.
DR. LENGERICH: I guess I also want to make sure that we do -- I thought I heard people in Alabama and Tennessee saying that this re-engineering is critically important, and that really comes as a priority over some of the issues around the race and ethnicity. So I think we really have to make sure we address that problem in addition to dealing with the additional collection or category collection figures on race and/or ethnicity.
DR. MAYS: Can I ask a question, because I actually don't remember. Is there a really big issue about the resources?
MS. BREEN: Huge.
DR. MAYS: So we should probably say something about the need for the resources to do this re-engineering. I think there is willingness, but it is that there is not the resources. The resources are coming from CDC to the states, or do the states try to provide it themselves.
DR. MADANS: I think it is both. The NACES which is the state organization of registrants, just met in May, June, recently, and the entire meeting practically was about re-engineering. But there is some seed money to do some prototype things. Some states are doing it on their own, some states have more funding than others, so they are really trying to work off each other and use a smaller amount of money. But remember, you have to do at least 57 systems. Some of the money -- a little bit of it is coming from NCHS, but with a flat budget, if we are paying for re-engineering, we are not paying for data. So you are juggling. Then some of the states are better than others, so they are going a little bit further.
But none of the advances for the new certificate, including the standardization for race and ethnicity, will happen without re-engineering, because they are not going to change the system that they already have and then change it again. So it is all tied up with that re-engineering, which is why it is probably the most important thing.
There are estimates. I don't know what it would cost to do it.
DR. MAYS: For the whole country?
DR. MADANS: For the whole country. There are estimates, but they are high.
DR. MAYS: We also had two other hearings. I'm not sure we are going to get there today, and it may be an exercise where we have to save it for another time. The other hearing was one on the American Indian and Alaska Natives. We began just recently in L.A. with one on Asian, Native Hawaiian and other Pacific Islanders.
The decision was, because there are still groups we haven't heard from to continue that in November around APHA, so we will do that. Please put it on your calendar. I think we will probably try as we did before, to do it right before APHA.
(Simultaneous discussion.)
DR. MAYS: Part of doing it there is because we have the population there, and we will be able to get -- Jim didn't come back yet; he has been very helpful in outreach to some of the groups that are actually trying to collect data.
There is an enormous number of groups in California that are already working on this because of CRETMEL, so I think that we couldn't have picked a better place to some extent to listen to what the issues are.
I was just talking about you. I was saying that we were coming to San Francisco in November, and that you have been very helpful in putting us in touch with different groups and helping us to think about who would be groups to hear from. California is a very good place right now. We are there because of CRETMEL to some extent, but the thought about the collection of data on race and ethnicity and how it impacts certain groups, people are very ready to talk about that. We have solid examples because of the preparation for the initiative. So we are going to continue there.
I think this process -- I'm hoping that what this process has done is that for those of you who haven't been here, that it is helpful in terms of bringing you up to speed. It is the kind of questions we need to ask. I think I want to make sure we do these things before we launch into our report, so that I have a much better sense of where people want to go.
I would like to take time to do two things. One, we had a couple of questions that I think we want to ask Jennifer about, and then two, I want to hear from people a little bit about, as you have a sense of the way we approach these population issues, what you see are important issues and what your areas are that you want to contribute to.
We had a question that we are going to ask Jennifer, so I want to get back to it. Very early on, there was a letter that went from our group about the NCHS budget. In particular when we wrote that letter, we talked about the importance of the NCHS. So that is the response that we get back, which means that they are going to be looking at these issues.
One of the things that has come up as a function of discussing that is, it is useful for us to be able to continue down this path if we have more information. One of the things that I did commit to is that we definitely will have a person here who can begin to answer some of these questions.
DR. MADANS: Tell me what I said.
DR. MAYS: I think it was one of those briefing things, so that is why I said it. That is where you see the staffers going to the Congress, because people tell them, say da da da da da, and they pipe up and say it.
What I want to do is to assure that we will have somebody here on an ongoing basis, so that we can continue to ask those questions. But there is also another level, that what is important that is being raised is, how do we learn about what is going on at a very detailed level in order to be able to comment.
DR. MADANS: As we had discussed over the phone, we are thinking about how best we can provide you that kind of information, and having someone here to answer questions.
I know that the kinds of issues you are dealing with go across the entire center, so some of the detail you really need the person who works in that data set to explain it to you. There may be a couple of people who know a little bit about a lot, but not a lot about anything.
So to the extent that we know beforehand, if you want to get into some kind of detail, if we know that beforehand, then obviously we can make that available, because it may not be the same person. But at least you will have an expert. Then we need some kind of continuity.
As you and I talked, maybe what is most important is having someone who knows what to ask. If they don't know the answer, and since we are only a phone call away, we pretty much can get an answer to any question within minutes.
So I think that we can probably work on some way, so that you have that information. There are probably things going on at the center that you should be aware of and maybe aren't, other than these big budget things, like we are going to have to cut the HIS, and we are not going to do other statistics, or something like that, that you will hear about.
(Simultaneous discussion.)
DR. MADANS: For example, the reason I was late was, we had a little contingent from the Census Bureau over at NCHS today, because there are real denominator issues that don't get a lot of play, but basically if we don't fix them, we are not going to calculate rates at all. We won't have any control counts and all that stuff.
So it is kind of behind the scenes, and it doesn't get a lot of fanfare, but if it doesn't get done -- and that is also the kind of thing that I think you should know about and put on your priority list. One of the main reasons --
DR. MAYS: And it is something that we are very interested in. We have actually talked about that here.
DR. MADANS: But we feel like we are doing this without funding generally. But it is not only that we benefit and the Bureau benefits, but the entire statistical system, even the Department. Everybody uses these denominators. I don't like to push NCHS too much, but if we hadn't dealt with the bridging problem on the Census race data from the '90 to the 2000, we really would not have rates right now, because there would be no comparable denominators for many of our numerator based data collections. So that was a pretty big effort that I think was pretty successful, but it is not over. We are going to be living with it for another ten years.
There are still not inter-censal estimates for other than the resident population, so all of our trend data looks like -- you can't look at the '90s and compare it to 2000. So there are those other issues that probably are really good to bring to your attention, and also let you know some ideas we have about research projects to work on those things and get your feedback, and if you think it is a good idea, your support. We sometimes have trouble getting this thing to fruition.
In the conversation today, both the Census person and I said, well, we could answer that question, that is an answerable question, but we just don't have the staff to do it. But maybe there are other ways to get other folks involved and get a little further, so that may be useful as well.
DR. MAYS: See, I think the other question became one of, there are things that we keep learning in our hearings. We think it is very important for those to figure into decisions we make. So again, who you have here, or having the person here consistently I think will be really important.
I was phrasing the question one way, and then it was put on the table a different way. It is like, we hear all these things at the hearings in terms of these small populations, and it is like, if you begin to cut anything -- and we hear less from those groups, but yet, we are out hearing that they have no data, or that the data is so small and they have to bank it after about three years by combining it. If that gets cut, then we have to wait five, six years, and that is really a problem.
So we want to try and make sure that some of the decisions that you will make, particularly as your budget is cut, is critical, we think. It is almost like we have now information that we want to make sure gets fed into some of your decision making.
MR. HITCHCOCK: We also talked a little bit about the scientific advisory council that you are putting together, and how we might interface with them.
DR. MADANS: There is a plan for that. I know that --
DR. MAYS: Can you share it?
DR. MADANS: If I knew it. I know there is a plan. I know the board has just been formed, and I think everyone who was on it has agreed to serve. So the letters of invitation have gone out. I can't tell you who they are, because I don't remember. But it is reasonable, I think they understand what we are trying to do.
I know that there are a lot of conversations with John Lumpkin about how the two groups would interface. There may be some options put out, whether there would be members on one that would come to the other. I don't really want to say because I don't know what they decided on. But I know that there are some.
I think we may have ideas about ways we want the board to operate; they may have very different ideas about what they want to tackle, what they think is most important, where they are going to start. So I think a lot of that will be determined, how the interaction goes and what they decide they want to do. They don't know that yet.
DR. GREENBERG: Do we know when their first meeting is, or who the chair is?
DR. MADANS: Yes, we do. The chair -- I forgot her name. She used to be head of CBO.
DR. MAYS: Head of what?
MR. HITCHCOCK: Congressional Budget Office.
DR. SCHWARTZ: Nancy Gordon?
DR. MADANS: No.
DR. GREENBERG: She is still at Census, isn't she?
DR. MADANS: She is still at Census. Jane something, I don't know, I can't remember. But I think they are trying to set the meeting up for October, maybe the 9th, early October.
DR. GREENBERG: John Lumpkin could possibly contact the chair and they could have a discussion.
DR. MADANS: Yes, I think they had worked something out. So there is understanding that there has to be cross fertilization. Again, I don't know what they are going to take on. I assume it will take them a meeting to get themselves oriented in what they are going to do. They have to go through some data training. We were just happy to have it. It took quite a long time.
MS. BREEN: We had actually another question. This is very detailed, given the level it should work, but you might know, because it has probably gotten some play in the bridging.
NHIS has always asked the primary race in addition to multiple races; it has really been at the forefront. We had heard that primary race was not going to be asked anymore. Is that true?
DR. MADANS: A terrible rumor that OMB keeps bringing.
MS. BREEN: Good.
(Simultaneous discussion.)
DR. MADANS: OMB does not endorse the followup questionnaire, which is what we use for bridging. They prefer that we didn't ask it. However, they do understand and have been fine with the fact that while we have been in this transition period, we can't do the bridging without having that question, and there is some evidence to suggest that the model that we are using that we did the 2000 bridge on, which was in use from the inter-censal, that that model may change over the decade as the makeup of the multiple race population changes.
So one of the research projects that we would like to continue is to keep doing the model estimation with more recent years of HIS, over the decade. Then if we have to, we would change the bridge as we go, because all we do is give the bridging parameters to Census, and then they take their file, they apply the parameters, and then they just calculate the rate.
So the last of my conversations with OMB is that they were not going to question the use of the followup question on the HIS. They have though questioned it on every other survey. Up until now, we have negotiated that we should keep it on our other surveys. I don't know if anyone else has been successful. I know there was an issue on the household survey; I don't know if it is still on there or not.
But for the moment, it is still on HANES, and it is still on the phone surveys. That is to try to look at comparability across the surveys, and the characteristics of the population, especially on the phone surveys.
I don't know how long -- every year we come up, we get the same question. We do the same justification. So far they have taken it. I'm not as concerned about HIS, although you never know.
There seem to be two kinds of people in the world, those who think the bridge is important, we need to ask the question and do it, and another set that feel that by asking the question we are not accepting the new guidelines, that we are trying to get around the guidelines, and that we shouldn't be allowed to do it.
All of our publications have switched. So anything that is coming out for a year data is using the new -- HIS as well -- is using the new multiple race set. Anything that is going back in time, we are starting that transition where for several years we will do it both ways, and then we will move to the new.
So in terms of publication, we are switching. The data tapes have both, but in terms of this methodologic use, we think we will be able to do it.
DR. MAYS: I was going to ask you a question. You all have not been able to do it? And you won't be able to?
DR. QUEEN: In the first place, HRSA, only about a quarter of their data collection activities are surveys, but the ones that have thrived for several years now is primary race, how do you best describe yourself, so if you name it, it will allow it.
HIS has had a history. They asked the question for a long, long time. Given that we are doing one-time cross sectional periodic surveys, like the national survey of nurses, they are just not going to let us do it. We can't justify it. They will make special exceptions if you can provide a really good justification. We really can't.
DR. MAYS: Can I ask a question in terms of NIH? The only requirement is what we report back, so you don't have any requirement on any of the R0-1s about --
DR. CAIN: Not on grants, no. On the contracts we do.
DR. MAYS: On the contracts, what do you do?
DR. CAIN: What are we doing on contracts? I'm not sure, but I would think it would probably go by the same rules that have just been --
(Simultaneous discussion.)
DR. CARTER: You do have a planned enrollment table though for the grant application. But what is interesting is, it doesn't include an option to report information on those who report more than one race. But if you want to report the information which is voluntary on a principal investigator -- but the planned enrollment doesn't have a place for it.
DR. MAYS: That is why I was asking, because I know what we have to do in terms of reporting who we saw, and I was just wondering in terms of a followup question or anything. You are starting to have -- if it is over 500,000, in some instances you ask those to be used, so that they are coming under more of a contractual agreement, as opposed to all of them being R0-1s. So some of those do get kicked over to --
DR. CAIN: U's are considered grants. That is important, though.
(Simultaneous discussion.)
DR. MAYS: Were there any other questions for Jennifer?
DR. CARTER: I just wanted to point out the inclusion clause that came out in August of 2001 for the reporting of racial and ethnic data from NIH. Unfortunately, they mixed up the title of the federal standards for racial and ethnic data. It calls it OMB directed data, but it is not an OMB directive to anyone.
DR. MADANS: Just because a lot of the data collections are switching, so they look like they are OMB compliant, and they are probably not. I think that is going to be another quality issue.
You mentioned before about the reporting of race on death certificates. Our provide surveys switched in '99, I'm not sure why, but they did, but they are getting very few reports of multiple race, especially on the inpatients. The way those data are collected at the source, you are not getting it.
So now we have another disconnect that goes in the other direction. It looks like the numerator is compliant with the Census denominator, but in fact they are not. So we have the opposite of what we have in vital statistics. As long as the population is relatively small, it doesn't make a lot of difference in the race. The population at large is going to start making a big difference, unless we can do something else at the source. That is going to be tough.
DR. STEINWACHS: Like the hospital discharge survey. There is no sanction on hospitals to collect multiple race and ethnicity.
DR. MADANS: A lot of it is missing. There is a check box. You look in the record, it may not be there, and you don't really know. So we are very nervous about how we can put that in a table, because it implies that we actually have the data, when we know that we don't have the data, but the form looks like we have the data.
I know CDC in Atlanta has a big problem, because a lot of their reporting are coming from the states, and they don't have any control over the quality of the data.
DR. QUEEN: The same thing happens with HRSA getting data from grantees, who are getting data from providers, and who knows how they collect it. So our form looks compliant, but the data that can be fit into it --
DR. MADANS: Is not, right.
MR. LOCALIO: Jennifer, when you say a lot of the data are missing, is that two percent, 20 percent, 50 percent, 75 percent?
DR. MADANS: I think it depends on the data system. I think the inpatients in the hospital seems to be worse. I think it is about 20 percent. Ambulatory is better. It is bad.
DR. MAYS: Thank you. We already had all the questions formulated by the time you got here, so it was good.
What I want to do is quickly take a little bit of time to have each of you talk a little bit about your population-based interests. There were things that you wanted to see either the subcommittee do or the full committee tackle, I think this is a good time to put those things on the table, so that as we develop work plans and have a broad sense of -- as you can tell, at the executive committee retreat, we were talking about some reorganization issues, and it would be good to hear the kinds of things you are concerned about or want to do, or burning issues or passions that you have. Put them all out on the table now.
Don, let's start with you.
DR. STEINWACHS: My passions, okay. Just maybe two or three things, I guess. One is, I think the issues of measuring race and ethnicity is something we need to keep pushing on. This discussion has talked about that we now have a new format which is richer. The reality is, we can't get the data into it. I don't think much of America is going to do much about it, unless we continue to push on that.
The other is, being part of a school of public health, I always marvel. I mention every so often that when you look at the research that we do, and the activities, you would think we were a school of disease, disability and mortality, because we talk about diseases, and we don't really talk about measuring health very much. 2010 and other efforts, when you look at them, still look like collections of diseases and not health.
So it seems to me we need to keep coming back to something which is on your list very much, Dickie, is how do we get a better measure and sense of the health of America, its vitality, its productivity, those things that have economy values, and then try and put that together with what is a lot of where we spend our money, which is on disease and disability, and try and triangulate that better than we do today.
I don't think our disease and disability monitoring does justice to health. At the same time, I recognize that we are having a hard time getting people to focus on health, because it is only when the absence of health is there that we start to focus individually and collectively.
The one other thing that the discussion here generated was, when you talk about where are the points at which you can get the system to move, our natural focus and appropriate one is at the federal level. But when you talk about where the authority is for health and public health or the licensure of physicians and the accreditation and the authorization and licensure of hospitals and everything, it is at the state. We still have the horrendous problems in this country that the states don't know much about, the health, well-being, and when you talk about racial and ethnic disparities, they don't know much about that, either.
In the past, NCHS has invested at different times in trying to see, are there other ways to extrapolate down from stuff we have now to state level estimates. Most of those are rather poor, but I think we need to keep coming back to that question of how do we provide states with the information they need, particularly around racial and ethnic disparities; can we use the current population survey, can you link that to the behavioral risk factor survey, is there anything you can do that makes it better than nothing, or maybe if you do these things, it is really worse because you produce misinformation, I don't know. But I think we need to push on those things.
DR. MAYS: Very good. Nancy?
MS. BREEN: Nancy Breen, I work at NCI. I am an economist by training. I would love to see equal opportunity and lots of equal outcomes throughout the country. So I guess that is my real dream and passion and what drives me.
I really like what Don just said and also what Russ was saying. I work in a surveillance program, and I worked at the Census Bureau before I worked at NCI, and that is where I met Edna. So I kind of tumbled into surveillance, but I think it is a really important scientific endeavor to be able to track what is going on in terms of what people do have access to, not only health care, but the whole range of things, and how our well-being is, in terms of employment, in terms of the distribution of wealth, the distribution of income and distribution of food.
We actually gather information on almost all of this stuff in the country, although we don't always have it in a way where we can get a good sense of how it all plays together, the effect one thing has on the other so that we can get good causative models.
I know I have at times watched analysts in other countries. Canada has a population health model, for example, where they have an input-output table, and they try to organize all these various surveys that they have got into a giant output, like Leon Tiff did in the '70s for economics, to try to understand how the whole society was orchestrated to input certain things, throughput them, and then what the outcomes would be.
I think that is really my dream for surveillance and health, which is why I like to see us collecting good data at the state level, because I think until we do that, we are not going to have an adequate surveillance system in this country.
I would say that I just started recently using the BURFIS data set. I have been using NCHS for years, and I am convinced there are high quality data. There were gaps and missing things, but they are high quality data sets by any standard. So is the SEER data, the cancer registry data.
The BURFIS data is wanting. I think part of it is the way it is collected, where it is tossed out to the states and they can do what they want and they can develop their own sampling design and their own way of reporting out the data. It is fast and it has some advantages, but it has got some major scientific limitations as well.
So I think surveillance is really important. I think it is under noted, underrated, under financed. I would like to see all of those things included.
DR. MAYS: (Comments off mike.)
MS. BREEN: They know it is underfunded and underrated. With this kind of information, we can make the case.
I think the very last hearing we had, that point was made with such passion by people in the Pacific Islands. They said, we know we have got health problems in these communities, but we can't get grants because we don't have data that can document these health problems. So if you can't document it, you can't show it to the people out there that have the possibility of funding and the policy people, you really can't move forward with the most wonderful things in the world, if you can't show them there is a need, particularly in this country at this time. I think your appeals are going to be inadequate. So I think it is very critical. I'm quite passionate about surveillance, actually.
DR. MAYS: I think the theme has been, no data, no problem. So it is almost like, if you don't have any data, then there is no problem there.
MR. HITCHCOCK: The model minority.
DR. MAYS: Oh yes, the model minority, meaning they have no problems. Gene?
DR. LENGERICH: Yes.
DR. STEINWACHS: What is your passion?
DR. MAYS: We know you're on vacation, so just tell us some.
DR. LENGERICH: What I would do is reiterate the point that I had passed on to Marjorie and others. Let me frame them just a little bit differently.
I think one of the areas that I would like to see us work on is the examination and maybe some recommendations around standards for surveillance. I think there is an important state level component, but there is also some national level components in there as well.
I guess I am somewhat familiar with the various establishment of indicators for environmental health, for chronic disease, for occupational health, and they very much are extremely different. So I think that this is an area where there could be standards for population level surveillance. I think this is something that would be overlapping with the standards group, at least in title.
Another area is the issues around disparities in health. I think that we could use some looking at the different methods and measures that are in use or being put forward for doing that. I know Ken Kevlin and others have been looking at that, but I think that is an area where we could weigh in as well.
Then a third area is a more specific -- is also a surveillance issue like Nancy's, but it is the utilization of geographic data for disease surveillance, population monitoring. It has extreme potential, and it also has extreme limitations in the area of privacy and confidentiality.
So I think that there is -- we should take a look at how that can be utilized for population health in a secure confidential way as well.
So I very much agree with the ideas around surveillance and the measurement of disparities among racial and ethnic groups, but I would frame them in little bit more specific areas. I see that there is great overlap with some of the other subcommittees as well.
DR. MAYS: Very good. Susan?
DR. QUEEN: I would be very interested in seeing the possibility of development of the small special studies, very concentrated, very targeted. Speaking as one who is working in NCHS, where you have very large generalizable representative, et cetera, very quantitative data sets, I also see the value in having something like these for small populations that you may not get any other way. You may not be able to say this is representative of whatever, but I think there would be tremendous value in doing some of these.
You are not going to have the funding to do everything that you want, so the thought of doing some very small and very targeted studies is very appealing, whether or not it is able to be used for Healthy People 2010, or not.
The other interest I would have is in seeing if there is any possibility of including some of these other types of studies that we mentioned earlier for the Healthy People 2010. If they can't be -- I don't know if they can be used for targets or for goals, but why not, if there is some way to consider them, and to possibly expand what has been used.
DR. MAYS: Very good. Harvey?
DR. SCHWARTZ: I'm a generalist right now. I haven't been in the past, but I am now. I'd like to see results in action. I'd like to see action galvanized. I'd like to see partnerships and I would like to see the link between data and the impacts on improving peoples' health, and in particular eliminating disparities.
DR. MAYS: Olivia?
DR. CARTER: I'd like to see more efforts to translate the research and data into action, but in two different ways. One, to influence the policy makers, so they have the information that they need to make the decisions, but also to close the circle, to communicate the findings back to the communities in which we study, because we tend to overlook that aspect of it.
So that is one. But what I haven't heard so far in what people have raised is what we can do to use the data for health care quality improvement efforts. This is following up on the equal treatment report, et cetera.
DR. MAYS: Jim? You're a visitor, but you get to talk.
PARTICIPANT: I'm very happy to hear people talk about action.
DR. GREENBERG: About what?
PARTICIPANT: Action.
DR. MAYS: She is a policy person.
PARTICIPANT: So I agree with what Olivia just mentioned, and the drive to actually use data to improve health. I think a lot of times, data is just collected. Whatever is collected for Healthy People 2010 has to have some purpose, whether it is accepted or not. Also, I think what we want is to improve the health.
So whether it is an official database or whether it is a population study, we just want it so we can improve health.
DR. MAYS: Let me ask a question. In California this is part of what they are trying to do with CHIS and some other things, having these data query systems. NCHS is doing that, Suzanne Heurtin was reminding me of the data that they have been putting up in terms of women. It allows anybody to go to this site and start pulling up and making little tables.
is that the kind of thing that is useful for people in policy to be able on a moment's notice to take that data off? This is happening more and more.
PARTICIPANT: Yes.
DR. MAYS: I want to know, how useful is that?
PARTICIPANT: It is useful in theory. I think the issue that I come across is that the data query systems are not intuitive. I've been to the site, and I don't always know what I am doing.
We have someone in our office who is very familiar with it and could pull off the data. We have a data specialist who can do that. In particular with the census, we actually have a training to teach people how to use the census data, because it is so counterintuitive in how you actually find the data. You can't just go to the Census site and type in Chinese. But we got a lot of really good response from people, once they know what the query system is.
DR. MAYS: The reason I specifically asked that is because I think that may turn out to be one of our big recommendations. The hearings that we have had, the extent to which people can get access to your data and do what they need to do with that is good, but it is turning out to be better to do the things the Census are doing. They are taking and putting data at little sites, and then they have community groups that they are actually training and paying, who then just keep providing it to the community.
So I think for the policy people, they really resonated to that. I think that is one of the things for NCHS to think about. I know you have done a heroic job of now getting the data out faster, and I think the next step will be if it can be given to the community in some ways. Then the action that end of the table is talking about just may facilitate it.
DR. SCHWARTZ: Just to comment on a related topic, HRSA, the Bureau of Primary Health Care, has health disparities collaboratives. One of the things that they are doing is exactly what you are referring to. They have a large cooperative agreement with the Institute for Health Care Improvement. What they are doing in part is setting up registries for the centers and the clinics, so that they can begin to track patients and to determine whether or not -- like, if they are in a diabetes collaborative, if they are getting the hemoglobin A1C once, twice, getting the eye exam, the foot exam, and then the centers and the collaboratives have this data in the community, and they use that.
So it is a similar type of model, and they get it out to the community. That is one of the things HRSA is doing.
PARTICIPANT: That reminds me of the other thing I want to hear, is testimonials from health care professionals that they are actually using and benefitting from this data, especially the race and ethnicity data.
DR. GREENBERG: That is a good idea.
DR. MAYS: Yes, that really is. Thank you.
DR. MADANS: Those people probably will not use our data. Those are not the kind of data we collect.
DR. GREENBERG: The thing you talk about is in your data, anyway.
DR. MADANS: You can ask too much of data, and I think you have to be realistic about how it is going to be used and who is going to use it. We have invested a fair amount in getting data quicker, which I think is important, and making it more accessible. We have a project with women's health, we have one with aging. It is not cheap.
To make it useful, you do have to figure out everybody's intuitive approach. There is not one. So it is a real knowledge transfer thing.
DR. LENGERICH: One of the things that makes it more useful is if it has some geographic component to it as well. I think people want to see local data, or data as local as possible.
DR. MADANS: I agree. And as we said, then we have all the confidentiality problems.
DR. LENGERICH: Yes, and I think that is the place that we could make an impact.
DR. MADANS: One of the things that I think has happened in all statistical systems is, the cost of data dissemination as a percent of the total cost of the data project has gone up. We would do a data tape, have an IBM machine to read and maybe make 20, and that was it. Time frames were longer, life was very different. So that was kind of incidental costs; we hardly even budgeted it in. It was just, you did it and learned over time.
Now, to do it right it is going to be a big percentage of our data function budget. If we have fixed costs, if you think we are cutting the HIS now, we have to do this for -- the only thing you can do is cut data function. There is no other place to go. So I think in the next couple of years, you are balancing maintaining the infrastructure and doing this data dissemination. It is an exponential curve, about how much it costs to make it more accessible. Once you really try to get it -- if I can pull the number out, you have spent a lot of money.
DR. MAYS: I think the hope is that I think the technology is going to --
DR. MADANS: It is getting there. There is a lot of stuff in the private sector. And as the old folks leave, the new people coming up are a lot more comfortable with this kind of interaction. You don't have to have quite the same kind of systems. But right now, it is a big-ticket item to do. What we try to do with that database is not cheap.
DR. MAYS: Virginia?
DR. CAIN: A number of things we have already touched on. One primary thing is getting a better handle on the subgroup populations, whether that be through the smaller scale studies that Susan was talking about, or some other way. I think it is critical that we better understand them.
I think a few other things that are maybe -- other factors that contribute to peoples' health that we perhaps haven't talked about. We have talked about socioeconomic status; I think that is an important thing to consider. We haven't really talked about immigrant status, but I think that -- and that relates to the language that is spoken. I'd like to see us talk some more about that.
Also, the multiple race issue. We are collecting the data, which I think reflects better on what the population looks like in the United States, but exploring that a little further, about what you actually do with it and how you analyze it now that we have this data.
Those are the main things I would like to take a look at.
DR. MAYS: Debbie?
DR. JACKSON: I was rather smitten at the last hearing when Lucinda talked about mining administrative data. It caught me off guard, because I thought that would be an area of such detail and specificity that I thought people might be more concerned about the privacy and confidentiality issues and just the complexity of it. But he recognized the information that is out there, people are not taking advantage of, or we don't have the access to it, or the linkage is not there. But I think we are on the cusp of it, and I think there is just an incredible reservoir of information that is there that we can take advantage of and use, and somehow work it, work the system more, a little more effectively.
DR. GREENBERG: It is really interesting that Debbie said that, because we didn't have any discussion before. I obviously have a lot of interest also in improving administrative data and the uses of it, recognizing its limitations, but also that it is potentially at the local level, at the state level, its coverage can potentially capture information, but on a volume of capacity that is not possible for surveys, of course.
We talked about how difficult it is to get good racial and ethnic data out of administrative data sets, so that is the other side of that.
I would really like to see this subcommittee infuse the whole committee more. I have been open about this. I have a passion for standards. Probably you have nightmares about HIPAA, but I have spent a lot of time on HIPAA-related issues. But I have been somewhat disappointed that the focus of the HIPAA standards - -and I have recognized why, but that the focus of the HIPAA standards -- and we heard today that we are not there yet, obviously, but has been on formats and not really on content of the data, although I think just in standardizing the basic content, we will be head up to use administrative data for some of the purposes that we would like to, and we can't.
So I think it will definitely contribute, and that is why I have always been an advocate from day one that public health has to be a player in HIPAA and in the standardization, and that we can benefit from it. Those of you who are really in the more population health framework need to be infusing that into the other parts of the committee.
That is why I pointed out to them this morning that some of the recommendations that potentially might be coming out of the work group on quality, these are old things that have been kicking around for a long time, but they limit the utility of administrative data and of data for population-related purposes -- the lack of identifiers, the lack of standard code sets across settings, of course the race and ethnicity, several of the things.
So I'd say we need to -- there is a push on that. We have a commitment at the executive subcommittee level to population health really being the overarching mission of the committee, but it breaks down a lot of the action.
I'm not saying that to be critical of anyone; it is just sort of the reality. So even though I am not always here at your meetings, I am cheerleading for you.
Something that Don said, yes, I do think we obviously do a lot better looking at disease and illness and mortality, of course. But I don't think we do that well on disability, comparatively to illness and mortality. And of course, you know one of my passions is trying to improve standard collecting even, and then standardizing the collection of data on functional status.
DR. MAYS: Just so that you know, I'm going to make a recommendation again tomorrow when we do this executive committee thing, that when people present in the full committee, that they have to tell us in terms of their recommendation what is its population health impact.
DR. GREENBERG: Yes, if they'll do.
DR. MAYS: I'm going to bring it up again. It is like a budget impact on a population health impact. So they have to think about it. Whether they get it right or wrong, I want them to start thinking about it.
DR. GREENBERG: Push for it.
DR. MAYS: Olivia, how can we be helpful to you?
DR. STEINWACHS: Do you want us to get out our checkbooks?
DR. CARTER: Well, there are going to be crossroads for us in the future, whatever the budget is going to be, in terms of where we put emphasis and what do we do. So identifying the areas that we need to be concerned about, some options that we might consider, and also what you think might be the big research issues. We have come up with some in terms of -- we are sensitive to the OMB issue in general data quality, I think, even before OMB was. We felt that this is part of our mission, that we had to -- if we couldn't stand behind it, we had to tell you what was wrong with it. We had to do the research to be able to show you that yes, we know that race is misreported on this percent of certificates.
So what needs to be done in there in terms of your understanding of the limitations of the data sets, hopefully to improve them, but if we can't improve them, at least we can provide the infrastructure around your interpretation of that.
I didn't hear the discussion you had about the 2010 databases. I can tell you, there was a lot of discussion in the work groups about using non-federal databases for tracking. For most cases, the decision was not to use them, for I think a variety of reasons, not that it can't be revisited.
This was all done within the subgroups. They had a lot of autonomy, too much, if you ask me, they had a lot of autonomy. There had to be a certain level of demonstrated quality and consistency in a data set. The whole idea of 2010 is tracking, and so you had to be sure that the data set would be around long enough to track, that it would be done the same way enough to track, that it had some kind of internal consistency.
You may not be able to generalize to the whole subgroup, but there had to be -- it had to be more than just a community survey, because it is quite limited. When you see change at that level, you have nearly no idea of what that change is due to. It could be just change in population base.
So I think there were a set of criteria that they used to try to find the appropriate kind of databases. If there are some they missed -- and I have a hard time believing it, because they really tried to find appropriate databases. But those are the sort of things that were of concern, because when you do the monthly review and you show the slide, you don't want to have to explain how you can't really believe the line. That is really what they are looking at; they are just looking at trends over time.
For the group you had, the ones that are hard to get and the ones that are hard to find, they didn't meet those criteria. There are a couple. I think there is some Georgia data for birth defects. There were a few that had the track record, but I think it was primarily to be able to say something consistent about that data set.
In the past, what you had with the federal infrastructure files is, they were going to be there, and there was some controls on them. We weren't going to change them completely, so that you could monitor over time. So it was considered, it can still be considered, but there were some criteria that those workers tried to look at.
I think there were some other ideas where maybe you couldn't use the data set as the official monitoring, but there would be this meta discussion around that objective. Remember that? We were not for sure, but we had this other information that could inform the debate. It is not the same as vital statistics monitoring, but it can tell you something. So I don't know what happened with that, but we can certainly find out.
DR. MAYS: Can I just ask a question? When you talk about research, were you talking about ideas in the sense of while doing intramural research? Or are you talking about -- you used to have a minority grants program, as to whether or not you were potentially talking about revisiting that.
DR. MADANS: We are talking about intramural research that we do, and also extramural research. There is a big push, and Ed Sondik has been a big pusher of increasing the extramural research program in CDC, which I think is going to happen.
We did fund three centers for excellence in health statistics, and I think two of the three were dealing with these issues. One was looking at small areas, these places where we are talking about the exact same things you are. It might be useful to have -- I don't know if they can all come, but some report to you about what they have done. They have had their three years, and we don't have the money to fund them anymore, which is unfortunate. And we did incorporate the minority grants in that for dissertations, because we felt we get a better bang for the buck to do it that way, so we used that.
Our plan originally was to have maybe ten of those around the country funded for a longer period. We could only fund for three years when we started. The money got cut out of the CDC budget, got put into the budget, it was out of the budget, it was in the budget. In any case, we don't have them. They aren't in extension for next year if they don't get funded.
But it is both, I think. There are some things we can do in house, because it is fast and applied very direct; how are we going to get these denominators so that we can put out race specific death rates next week, and others more long term.
So I think it is a good compromise, a combination, to have both intramural and extramural. So it is, is that a good idea, how should we do it, is the centers a good idea, should we just be doing R0-1s? Assuming we have money for all this, but what path should we go.
We have been trying to bring in fellows for a variety of mechanisms. We have suggested that they look at issues related to disparities. So I think it is happening in a variety of mechanisms. So we need some umbrella issues for that research to take on.
There is a huge amount of stuff we could do on the quality issues, what is most important to users, policy makers and so forth, what are things that are only of interest to demographers. We just want to see what would happen if we did this.
DR. MAYS: Just so I understand, would it help you at some point for us to send you ideas, to have a hearing, do something where we really could help? You are about to have your own board of scientific counselors, so that may do it. But I'm just trying to understand whether it might be useful for this group to engage a process to be able to give you some information.
DR. MADANS: I'll think about it. Maybe we could have a session. I don't know. It is also hard to ask you to think a lot about something that right now, we can't afford. So you'll come up with these great ideas, and we'll file them until somebody gives us money to do them.
We are concerned about the future of the statistical system. I think a lot of the ways we collect data now are not going to be the ways we are going to be collecting it in five years, and how do we prepare ourselves for that is a big issue. So that would be helpful.
Then of course, if you have checkbooks, or know people who do --
DR. MAYS: I'll write a check.
DR. GREENBERG: I think this subcommittee was supposed to take over the recommendations from the 21st Century Vision report, which certainly addressed some of these issues of the need to do methodological research, and actually a number of the issues that have been talked about around the table and were addressed in that report. So I think that that is right on target for this subcommittee.
The other thing I was just thinking was that I hadn't even realized that the centers for excellence were about to end their funding. But if you are thinking about having a hearing around APHA, I bet a lot of people from those centers go to APHA.
DR. MAYS: They probably go to APE, which I share the minority affairs committee with.
(Simultaneous discussion.)
DR. MAYS: Well, we'll find out and see if that is a possibility that we should follow up on. Edna?
DR. PAISANO: I guess in general, I think the committee needs to become more visible to tribes and American Indian-Alaska Native communities, what it does, and their focus, and so on and so forth. I really think the hearing that was held last September was really the first contact with the American Indian-Native Americans community.
I work with the Indian Health Service. The people we serve are members of federally recognized tribes. So that is a unique universe of people, as well as, we have 34 programs in urban areas. Keeping in mind that the U.S. government, all the federal agencies have a trust responsibility to Indian tribes and their members, and also that because of this relationship, there is not always a positive relationship at the state level with Indian tribes. They have to be aware of saying, the states will do this, and in most cases they leave out the Indian tribes and population.
Also, with the one HHS that Secretary Thompson is pushing --
DR. MAYS: Oh, the one voice?
DR. PAISANO: One voice, one agency or whatever it is called, to me that implies that all the surveys within HHS then would present data, collect and present data on the American Indian and Alaska Native population.
Also, of course, Vickie had mentioned earlier the improving of the reporting on the death certificates of American Indians and Alaska Natives. Also, in addition to the Data Council, there is also a research council, and they have an agenda. I think one of the recommendations that came out of that was that American Indians and Alaska Natives should be involved in research grants and research studies.
DR. MAYS: What is the research council?
DR. JACKSON: Research Coordinating Council.
DR. GREENBERG: It is not stuff that the Data Council generally covers. It is not health information.
DR. MAYS: This is BHS?
DR. JACKSON: At the HHS level, right.
DR. PAISANO: But it looks at research across the Department.
MR. LOCALIO: They have various support groups also.
DR. PAISANO: Also, as I listened to the discussion --
(Simultaneous discussion.)
DR. PAISANO: The only other thing, as I have been at these committee meetings and also the subcommittee meetings, I think I have more of a responsibility also in educating you on American Indians and Alaska Native tribes.
DR. MAYS: Thank you. We are open to it, and we welcome that. Ignorance is always willing to leave. Thank you. Russell?
DR. STEINWACHS: Russell, you may get the final word.
MR. LOCALIO: Numbers are my friends. I make a living as a statistician, so numbers are my friends. So I worry about the fact that Jennifer's glass is 20 percent empty rather than 80 percent full. I worry about misclassification. I worry about how people report things. So who made the mistake of sending me the NCHS manual report?
DR. GREENBERG: Health U.S.
DR. MAYS: We all get that.
MR. LOCALIO: Somebody asked me to comment, ten pages, and send it back. I always am concerned that the data as they are collected as presented in the best manner. I worry about whether estimates are consistent and efficient. I do a lot of work with complex data structures such as the surveys, although I'm not a survey statistician.
So that is how I earn a living. Therefore, the population data fit nicely into what I have to do for a living.
Jennifer, I do want to say that Calsbeck's recent paper in statistics and medicine does say, this work was funded as part of a grant from CDC and CHS. Do you want the contract number? So your work is getting reported, and it is quite good.
DR. MADANS: That's great. They have four years of funding and we have one extension. We were very pleased with the centers for excellence.
MS. BREEN: Russ, I would have sworn you were a lawyer because you have Esquire after your name.
MR. LOCALIO: I used to be, but some people --
MS. BREEN: See the light?
MR. LOCALIO: -- see the light.
(Simultaneous discussion.)
MR. LOCALIO: One of my former teachers who was primarily a sociologist I ran into a few years ago at the American Statistical Association meeting. I went up and introduced myself, and I told him that I was in another line of work. His comment was, well, it's good to see you are making an honest living. So there are other people who have seen the light.
DR. STEINWACHS: I was once told if you are good at math, you'd be good at law. It is about the same logic. And music.
DR. MAYS: Let me thank the group for doing what we have done. I think in terms of where we are headed, this helps us enormously.
I think now the task is, having done the broader picture now, is to sit down and do the reports and generate a plan for the reports, which I will do, and we will get back to the population report with our consultants, and then move on to where the others are.
We didn't get a chance to talk about the resources. What today did was make very clear that the things that are on our plate -- I actually put in resources things like, we have been asked to monitor functional status, we have been asked to monitor 21st Century, so we actually have quite a bit of work to do. I am trying to figure out a good way to do.
I think more of an integrative way is good. I think the it is the kind of thing that is being done today, and I am going to try and do that.
Marjorie, I'll see if I can't grab you at lunch or something tomorrow, to talk about some of those issues before we go into the -- because I think you have the material in there, but it is not a big deal, moving to talk in terms of the kinds of things we need, so that when we get into the executive subcommittee, we might be able to discuss it a little bit more. So if you have some room, maybe we might grab lunch together tomorrow and continue this.
I am looking forward to the working relationship with this group. I would also like to have some separate conversations with Jennifer and with Virginia and with Harvey. I think that there are some collaborative things we ought to think about. I would like to see if there is a way in which -- I want to see if I can push to think about having the data users meeting be something where we can talk more broadly about these issues, and in a forum like that, bring people together. I want to see if I can get some of that NIH information in terms of SES and things like that to feed in.
So I think there are some ways in which some of you that represent entities, if we could bring it together in some way where everybody is talking at the same time, it might elevate the discussion for different people. For some groups, you may go, we know all this, you will sit and say you know everything about the SES and you have had a meeting and stuff, and then somebody else will learn some things. So I think that a little bit of sharing here might be very useful.
I think it might be very helpful, and I want to see if I can put it on your agenda, to see if you all can think about having a data users meeting and a statistics meeting. There are really a lot of these issues where you can get your grantees, your staff, and users out there to all come in and be together to talk about these issues. That is what pushes it.
Then you have to make sure it stays on the website. That is my other thing. We all do data user stuff, and then we can't find our papers anymore on the website. They are lost.
Thank you very much. The next thing you are going to get is, the staff is going to be in touch with you, because we are going to start having some regular conference calls and e-mails, so that we can try and move the report along. But I think what we heard today were the cross-cutting issues, and then we can try to spend some time in cutting the report down in a way in which it is going to be useful for some of our policy maker colleagues.
Thank you, people.
(Whereupon, the meeting was adjourned at 5:35 p.m.)