[This Transcript is Unedited]
Hubert H. Humphrey Building
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Call to Order - Dr. Mays
DR. MAYS: Okay, folks. We are going to get started. We will wait until we do any introductions. We may have everybody that knows everybody and then we may have other people that are coming in. But we will wait a little bit, though. I am not going to be surprised if people who live here are late because more people are driving today because the train was messed up. I heard tales of woe.
Okay. Let's call the meeting to order. Good morning, everybody. Thank you for being here. Some of us are here already. So, for those of you who had to get up a little bit early, thank you very much.
Okay. Let me tell you a little bit about what I want to do in terms of this schedule. One of the reasons I sent everything out beforehand is because in contrast to our usual let's have three hours, we don't have that today. So, we are going to have to try and be a little flexible in the sense of getting through this agenda. Then there are other things from yesterday that got put on the agenda.
So, two things that I want to add, which is Keith Darnell wants to come in and as those of you who were there yesterday know that part of the issue that they want to talk about is population health relative to some of the coding issues. We will give him ten minutes and then the other thing is -- oh, John came in. Good morning, John.
I was just about to, you know, speak your name. Someone brought up the issue of the possibility of a full committee meeting on January like 28th, I think it is.
MS. GREENBERG: 29th.
DR. MAYS: Sorry. I keep getting that -- 28th, 29th.
MS. GREENBERG: The Subcommittee on Standards and Security is meeting the 27th and 28th.
DR. MAYS: So, it would be maybe afternoon of the 28th or the 29th.
MS. GREENBERG: I think they will probably have a two day meeting.
DR. MAYS: No, no, no. I mean for the whole --
MS. GREENBERG: I am saying I think the subcommittee is having a meeting both the 27th and the 28th.
DR. MAYS: Here is what I need you to do. I need you to look at your calendars because part of what I would like to propose is that if we are going to come in on the 29th -- I haven't looked at my calendar. So, if I end up e-mailing back, I can't, because I haven't looked. But if we are going to have a full committee meeting on the 29th, what I would like to propose is that we also meet on the 28th as a subcommittee.
We have got a lot of work and see if we can get through some of that.
What is wrong?
MS. BURWELL: The Quality Workgroup has decided that they would try to meet the afternoon of the 28th.
MS. GREENBERG: I think it was the 18th because John said he wasn't available on the 29th.
MS. BURWELL: It was uncertain.
DR. MAYS: I don't want to do this two at the same time. What I was trying to do was see if they do the afternoon , then if we can do the morning or something like that.
Okay. So, I just want to tell you that now so that when they start the calendar, you will now that we also have a subcommittee meeting, if possible, along with -- you know, kind of around the time of the full committee meeting.
Let's see, was there anything else that needed to go on the agenda today? I am going to shave off about ten minutes from the National Childhood. So, when Martha(?) is here, I will let her know that we are going to take some time off from there.
Anything else that we need to put on the agenda that anybody can think of to be as full as it may be?. Okay.
I know the staff has to step out at 9:00. So, what I would like to do is probably to deal with the hearing first so that we have that out of the way before they have to go.
As all of you know, we are having a hearing November 13th and 14th in San Francisco. This is prior to the ATAH meeting. This is probably what I should say is kind of the second half of the hearing that started in L.A. in which we are interested in issues on the collection of data on race and ethnicity in Asian, Native Hawaiian and other Pacific Islanders.
It is also questions on issues of misclassification, health disparities. So, it is kind of our continuation of the same questions that we started with in May.
You should have at least two things relative to the hearing. You should have a set of questions, which is in your booklet and you should have the draft agenda. I was just starting with Audrey to go through to see who is confirmed and who is not because part of what I want to do is to see if we can have time during the hearing to talk about the geocoding issue. So, if we have a little bit of time, I want to steal some time to do that.
Then actually take some time by the end of the hearing to also reflect on what we have heard and we want to review. So, I want to see if we can possibly that hour and a half of time.
Okay, Audrey, let's go through the tentative agenda. We have the regional administrator is a yes. Kudrinski(?), we don't know. The USAY(?), we don't know. Cotrere(?) is a yes and Jim Dawes(?) is with her. You haven't heard from Elena Yu(?). Jeff Cobiero(?) is a yes. You heard from LaTere(?), I guess, of the Census Committee.
MS. BURWELL: Yes.
DR. MAYS: And I will say, again, that as a follow-up, if the chair has a problem, it is that there are two people in Southern California. So, if the person isn't coming, you might try that. The Tomorrow Community --
MS. BURWELL: I haven't heard back from them.
Kenneth Ali Fossa(?), I haven't heard back from.
DR. MAYS: K. Z. Rowe(?)?
MS. BURWELL: I have heard and it is a tentative yes.
DR. MAYS: Okay. So, that is a maybe.
Kung Wa Hong(?)?
MS. BURWELL: Haven't heard.
DR. MAYS: Northern California Census Information Center?
MS. BURWELL: That is Jim Dawes.
DR. MAYS: So, we will skip the next three.
Sub Til Lau(?)?
MS. BURWELL: Yes.
DR. MAYS: This is a yes?
MS. BURWELL: Yes.
DR. MAYS: Well, which person? Greg Beaver(?) or Stevenson Curteia(?)?
MS. BURWELL: Probably be Stevenson Curteia.
DR. MAYS: Curteia? Okay.
Pedro Ontolon?
MS. BURWELL: Haven't heard.
DR. MAYS: Jeff Benjamin or Cale Murray?
MS. BURWELL: A maybe.
DR. MAYS: Which one is the maybe?
MS. BURWELL: Jeff Benjamin.
DR. MAYS: Guam(?)?
MS. BURWELL: No.
DR. MAYS: Linda Rosen?
DR. MAYS: Gerald Otay(?). She is --
[Multiple discussions.]
What about Ellen Wu(?)?
MS. BURWELL: No.
DR. MAYS: And James Hoffschneider(?)?
MS. BURWELL: No to the next two.
DR. MAYS: And Ernest Todd?]
MS. BURWELL: No.
DR. MAYS: All right. I think we do have time. So, let's build in at least an hour and a half, the second day, to have a discussion about what we have heard and what we want to do and the first day let's make sure that we have an hour and an half.
So, I think the first day we should look at ending at 5:00, 5:30, somewhere around there. I don't know how packed we are. I mean, it looks like we can probably end at 5:00 and it will be okay. I would suggest the second day that we can end -- because some people may not be staying. So, I would suggest for the second day that we try and end around 3:00ish because some people may be actually just going back and not staying for APHA.
I also put on the table whether people want to have dinner on -- was it that Thursday? If so, you know, I could make reservations.
In terms of the hearing, give me a sense of what things are -- that we need to do at this point in time. We have enough of a tentative agenda that I think we could send it out to our list at this point. Are we okay with that? But I would say put the people who are confirmed on that.
MS. GREENBERG: Everyone on here has been contacted?
MS. BURWELL: Oh, yes. With the time lag, some of them a day away, it is kind of cumbersome, but I have heard from most of them and I have gotten -- I have indicated their answers.
MS. GREENBERG: As long as you put where they are confirmed.
DR. MAYS: I think we should only send out those who are confirmed because I don't -- I think with it being this close, I would not people to think people showing up, who aren't and then vice-versa because I think if people -- if someone isn't there from that group and people see it, I think they will call in and they offer themselves to you at this point. So, I think we would be better off not having it than having other people.
Let me just raise, because It is also, I guess, the people who you are going to be seeing in your next meeting, the Samoans. As you are well aware, the Samoans were quite vocal in our hearing last time about being included and counted and voices being heard from. What is the plan?
MR. STEINWACHS: We will stand behind you.
MS. BURWELL: What is the plan for the Samoans?
DR. MAYS: To make sure the Samoans are included.
MS. BURWELL: Well, they want to talk briefly about having some time for public comment.
DR. MAYS: Here is what I would offer as a way to dig us out of this. You are going to go meet with that group and it would be -- I would offer them a place on the agenda when you meet with them. I would even let them select. I mean, normally we get recommendations from a variety of people. So, I would suggest that maybe what you want to do is ask them for a couple of names, say that there is a slot and then of the couple of names, ask -- you can then ask around and then select one of them.
PARTICIPANT: That is fine. Yes, there is a slot on the agenda. So, that is fine.
DR. MAYS: So, I mean, you can come to them with something. So, I think it will be really good.
Let's just take a quick look at the hearing questions.
MR. HITCHCOCK: Can we have introductions?
DR. MAYS: Oh, I am sorry. We have everybody. Okay. Thank you.
MR. HITCHCOCK: It is my job.
DR. MAYS: Audrey, let's start with you.
[Introductions around table.]
Great. Thank you.
Okay. The hearing questions. I think that they look very good. I think that they are an improvement probably on the questions that we had before.
Audrey, you worked on that? Thank you very much. I think what we will do is make sure our speakers get these and we all have this. So, it will kind of give us a road map in terms of asking questions of the speakers and, hopefully, they will follow this.
Any questions about the hearing, anything that you need to know?
MR. STEINWACHS: One comment. It seemed to me at some point and maybe it has been done already, it would be great to think about producing a report on the minority health for each of these groups. If something like that were done, I guess the question is what kinds of data might be included in that.
I was trying to get a spark maybe of the speakers to also get down very specific maybe in terms of if you thought Health U.S. being Minority Health U.S. and for each of these groups being able to produce a set of information that is comparable to what we do for others, what kinds of data or what kinds of tabulations might be there. That might help some of the speakers make sure that they have their agenda in terms of what health data they feel they need, but also the question of how do we put them into a comparative framework.
They may have reaction to that. They may not think that is a great idea or not, but it seems to me it might be one of those pieces that might be --
DR. MAYS: The plan that we have been struggling with is actually producing reports but also producing some letters because I think that as we have come to learn, the Secretary responds to the letters. He reads the reports. I don't know that he responds to the reports.
So, we are currently underway with trying to write a report on the very first hearing we had, which was on population data. I guess Nancy Freed(?) will be hear later and we have been in a discussion about pulling together reports for API. Then that is about as far as we have actually thought through.
But we try to keep the questions somewhat consistent, but what you just brought up reminds me of one of the other things to kind of squeeze in here and that was yesterday when Dr. Sondik presented as he talked about Health USA or was it -- Health U.S. -- that that is something that we should be somewhat involved in trying to help think through. That particular publication, I did talk to Diane Makuc.
So, that could be something that we would want to think about also, asking as we go through the racial and ethnic minorities, if there is anything in particular that they would want and they would find useful and that may be advice to give to them. I think that is a really good point.
So, let's try and remember during the hearing to actually ask that specific question.
All right, folks. Marjorie, are you coming -
MS. GREENBERG: Unfortunately, I can't because I am on the National Uniform Billing Committee, which is meeting in Chicago at the same time.
DR. MAYS: Chicago and San Francisco. Now, John is here. So, I guess I shouldn't say anything bad about Chicago. I grew up there.
MS. GREENBERG: How many of the members are actually going to this? Good.
MR. STEINWACHS: Marjorie, you could be in San Francisco and hook in by telephone.
MS. GREENBERG: Actually, I like Chicago, but I like San Francisco, too.
[Laughter.]
DR. MAYS: Okay. Is there anything else that either you or Dale want to raise before I move on to the next agenda item?
MR. HITCHCOCK: Do we have Internet hookup?
DR. MAYS: Yes. So, you will put that on the note that is in it? Great. Okay.
Anything else? All right.
MS. GREENBERG: Where is it actually being held?
DR. MAYS: We are at the Palace Hotel, which is a couple of blocks from the conference center where APH is.
MR. HITCHCOCK: We might want to go to the other meeting.
[Multiple discussions.]
DR. MAYS: Well, I think what may have prompted it is our notes went out about the hearing and they didn't have participants. This is a group that is actually in Carson, California, right outside of L.A. They came to the hearing last time and were like, you know, wanting to be included, wanting to be very much a part of it, as all of us remember. MS. GREENBERG: They weren't on the original agenda?
DR. MAYS: No, the agenda that went out, there wasn't anyone on it. It just said we were having a hearing. So, all that I know is that they are here from November the 3rd to the 6th.
You didn't get the letter. I have a copy of -- I will find you the letter. So, they are here. They are going to make visits not only to the Secretary, but to various departments asking about the collection of data on race and ethnicity, very specific to their group.
MR. LOCALIO: One quick question.
DR. MAYS: Sure.
MR. LOCALIO: Who has not been included in the combination of the previous hearings and this one? Are there any groups that we know about that have not been included?
DR. MAYS: Well, all I can do is go by what is here and my understanding in terms of what is here -- and it doesn't have it by groups -- is that I don't see the Samoans. So, that was why I made the comment that I did about you are going to meet with them, offer them a presentation. I don't know if we have --
[Multiple discussions.]
We don't have anyone. Okay. So, their name is on this version. I am trying to think if all of the -- I think they have both of the -- yes, they have all of the islands and territories that I think we were supposed to -- I think we now have a slot for them all.
MR. LOCALIO: But we are not here focusing on populations originally from Pacific Islands. We are now in the contiguous 48 states or we are not talking about them or are we?
DR. MAYS: Yes. What you are asking is whether or not the focus is on those individuals who are from those islands, but live in the contiguous -- that live in the 48 states or if what we are doing is focusing on people who -- it is supposed to be the combination of the two. It depends on who we have had in the hearing before, like, for example, we did hear from Hawaii. They sent Nolan Malone from Hawaii. So, I thought we would also focus on the Native Hawaiians, I mean, the Hawaiians who are in the 48 states.
So, it is supposed to be -- the kind of thinking was it was the combination of the two. Depending on who we had last, we would try and prioritize this time, having those other individuals available.
MR. LOCALIO: Let me just throw out a few things. We don't have anybody from the Aleutians that would be Pacific Islanders. We don't have those -- is that correct? So, they would be Alaskan, but Pacific Islanders because they live in the Aleutians. We don't have Filipino Americans or any -- because they wouldn't be included in this group.
DR. MAYS: My understanding is that, for example, a group like -- where are they? -- APTO(?) and the Asian Pacific Islanders, American Health Forum would represent probably Filipinos.
MR. LOCALIO: So, it appears then or are we comfortable that based on these two hearings, we have given everybody an opportunity to come and we are not leaving anybody out. It seems to me that the Samoans upstairs may be worried that they were left out. Is there anybody we have left out or --
DR. MAYS: I don't know. I will be honest with you. I don't know. This is what I have and we got this when the e-mail went out. That is when we got it. So, again, I don't -- there are names that have been put in here, but I think that the bottom line is what I will convey is to make sure that there is a balance here and that if for whatever reason they haven't found someone, that they ask groups like APTO, what is his -- Jeff Cavero(?) or they ask Ho Tran(?) to cover specifically -- to speak on behalf of those populations.
That would be my suggestion, that if ultimately they don't find the person, that they ask these agencies to be kind of responsible to do that.
MR. LOCALIO: It may be helpful when we are done to just have a simple table of these various groups who are represented and are representative, so that we at least feel we have good coverage of --
DR. MAYS: Well, Audrey is back. Are you trying to dash back out?
MS. BURWELL: Yes.
DR. MAYS: Okay. Is there someone that is going to represent Filipinos?
MS. BURWELL: Not as far as I know.
DR. MAYS: Okay. So, we will talk later. I am sorry, who was the other -- the Aleutian Islands.
MS. PLAISANO: Actually, the Alaska Natives, they are --
DR. MAYS: Okay. Great. So, part of what we will do is in the interim, I will talk with the staff about trying to lay it out so that we have a clear sense of if someone is not represented, that there is someone who will at least will be responsible because there are these umbrella groups that do oversee several groups.
Okay. That is a good suggestion.
Leslie isn't here yet. So, I think we can easily steal a little bit of time from the National Childhood Longitudinal Study to give to Steve.
MR. STEINDEL: Thank you. Just sneaking into the session because I am actually here in my capacity as workgroup leader for CHI, the Comprehensive Health Initiative, for Populations Health Reporting, something which I think this subcommittee has no interest in. So, I will leave now.
What has transpired, this workgroup was formed probably in the late spring time frame and I was chair of the workgroup and I looked at the daunting task and I said I think I will wait awhile before we do anything, with the thought of looking at the other CHI workgroups, who were doing -- bringing in recommendations on specific clinical domains and I thought, golly, all we can do is then ask that these domains report, we can just point to them and if we are doing diagnosis, hey, we can use the diagnosis.
Well, as the summer evolved, I realized that naive statement was a naive statement. It is just too complex a subject for CHI to tackle. So, consequently -- and I have met with the workgroup once and they have endorsed this approach -- there is at least -- there is one group member here and she hasn't heard what happened the other day. But we made a commitment to get a report into CHI no later than 11-30, November 30th, at 11:59 at night, so they will have it by December 1st.
This is because we are running on a short schedule, but I really don't think that given the scope of what we are going to try to do is really what we are going to attempt to do is just enumerate the diversity of present systems that are used to convey population health statistics and what type of data is collected and probably what types of terminologies are used.
In a very limited sense, obviously in the two weeks or so we have, we cannot do anything that represents something exhaustive and we are going to make that point. I sent Vickie about this outlining the approach. I think the end of the report is basically going to be a recommendation that this be further studied. I am bringing it to the attention of this group because I suspect if that recommendation goes through, one of the places it will land is at NCVHS, as well as NCHS.
I am going to craft -- because we haven't discussed it at the workgroup level or anything like that, I have some ideas about how to craft the wording of that, but I just wanted to give this group a heads up, get your reaction to this approach and see if it makes sense.
DR. MAYS: Questions, comments?
MR. STEINWACHS: Well, I was hoping that it was going to be November 31st or was it 2004 that you introduce this report?
MR. STEINDEL: No. That is why we -- we, actually at the meeting I was at yesterday, we started off with a lot of football analogies and this is going to be a case where we are going to punt.
DR. MAYS: Even I knew what you were going to say.
MR. STEINWACHS: Well, I started on my soapbox yesterday. So, I will continue on a short list today. You know, if it has any relevance that you see at this point, it seems to me there is some distinction between reporting on the health of the population and its ability to be productive and engaged and it is a little bit different from sort of the disease, mortality, morbidity reporting.
There may be some use in sort of thinking about what CHI needs to do in a more balanced kind of reporting system and that might be part of what --
MR. STEINDEL: That is actually what we discussed with CHI leadership before we actually ticked off the workgroup and discussed this approach with them, that this is much better done in say through CHI because as, you know, Clem McDonald said at the meeting yesterday, well, it is all clinical data. It is just a matter of how you translate it.
Well, that how is not simple. We have no idea how to do that.
MR. STEINWACHS: As long as you assume that absence of disease is health you are all right.
MR. STEINDEL: We also have no idea how to do it to preserve any longitudinal history on the data that we collect. You know, these are issues that we will raise in the report and, hopefully, we will find some learned people that can come up with some answers over the next few years.
MS. GREENBERG: For example, there is a disability book vocabulary workgroup in CHI but there isn't a quality of life or well-being. You know, that is not one of the domains. We are addressing functional status, the functioning in that disability, but just by the name it is more focused on disability than on general functioning.
MR. STEINWACHS: I guess one of these geocoding kinds of issues that comes up is that ultimately you would like to be able to link some of this to environmental data and the other data sources that you wouldn't think of to link within the clinical context more narrowly because there are important risk factors at a population level.
DR. MAYS: So, let me be clear. What are you asking about the -- between now and November 30th?
MR. STEINDEL: Between now and November 30th, of the subcommittee I am asking nothing. I am just giving them a heads up. Of you, I probably --
DR. MAYS: We like having you on the agenda.
MR. STEINDEL: Of you, I might -- if you don't mind, when we craft the recommendation section, I would like to run it by you for comment.
DR. MAYS: Okay.
MR. STEINDEL: I would not -- I would love to engage the whole subcommittee, you know, in comment.
MR. STEINWACHS: That is quite all right. We are willing to accept --
[Multiple discussions.]
DR. MAYS: All right. That sounds reasonable. Then you and Marjorie -- if it is going to come our way as a part of the being transferred to NCVHS, you will give us a heads up so we can do some planning and --
MR. STEINDEL: Marjorie is my CHI workgroup member. You might have been able to tell when she fell out of the chair.
MS. GREENBERG: Actually, I think I was out of the country when you set the deadline. I take no responsibility.
MR. STEINDEL: I set it as a temporary deadline, you know, that I would like to try to, but the workgroup is going to get an e-mail tomorrow when I get back.
DR. MAYS: This sounds like one of those things that really fits into our work relative to other groups. So, I think that is probably helpful to try and -- if it comes to us, to try and do this with one of the other subcommittees.
MS. GREENBERG: When we were talking a little bit yesterday about making sure that NHII work includes population issues. So, this is kind of a piece of that that the CHI -- both of them are very clinically oriented currently, I think.
DR. MAYS: What I would suggest, Marjorie, if you really think we will get this, is that when we are at the retreat and we are talking about kind of what work we are going to be doing and our work plan, that we actually plan this then because I am trying to make sure that at least for populations that we are kind of clear about all the things that are on our plate because of the resources that we need to kind of be able to do all these things.
All right. Thank you very much.
Because Leslie is not here, I am going to make another switch and I am going to move down to our follow-up on target populations letters and talk about the possible NIH planning group activities. Virginia's name is here and Virginia is over there and she is really there in spirit and her body is at another meeting.
MS. ROBERTS: She called me and I have to say I don't have a lot of background on this and I -- to convey the message to you that she is most positively trying and fully engaged, enthusiastic and on board, all those cliches, and would like to see it happen.
DR. MAYS: I will go through this background so that we are clear where we are going.
As you are well aware, we completed two letters at the last meeting that went to the Secretary. One letter was that about trying to see if we could get the Secretary to request funds, for example, from Congress to increase the number of targeted surveys, targeted surveys meaning those for some of the groups, subgroups, that we don't tend to have a lot of data from. We made a series of recommendations in that letter. One of them was also for some methodological work, to see how we can increase, for example, the number of individuals working in this area, how we could increase access to data.
So, we made several recommendations in that letter. One of the places that could respond to that recommendation is NIH. So, I actually did have a discussion with Reynard and Reynard said have a discussion with Virginia.
PARTICIPANT: And Virginia disappeared.
DR. MAYS: No, Virginia -- Virginia just can't be here today, but it is actually her office, the Office of Behavioral and Social Science Research, that often has the function of being the coordinator across several different ICs. So, it appears that her office is just the right place for this. She is here as a liaison and so I talk with her.
She is interested in pulling together a planning group and it would be a small meeting. I mean, we are not talking about something where it is a huge number of people. It is probably more like thinking about it as a workshop as opposed to a conference or anything like that and to discuss issues like how do we get investigators to use the data, how do we find out ways in which investigators who have data on these populations might be able to either pool data or link data.
She will also -- for example, we want to try and make sure that NCHS is involved. So, Jennifer will play the coordinating role there, either Jennifer or Jennifer will select someone else. I think she was telling me recently her plate is very full. We also want to look at some of the policies and procedures around privacy and confidentiality and see whether or not there -- what some of the barriers are and whether or not those barriers can be addressed.
The commitment that she has is that she is not interested in just doing this to have another conference, to have, you know, something that ends up on the shelf and to say we did it, but really to try and come out with recommendations, insights, policies, procedures or something, which can be useful in increasing the possibility of more data, either being collected and used or more data being used. I don't know which it will be.
I think it really depends upon where the group goes. This will be NIH's. It is not us. The reason we are talking about it is because it originated here. We wanted to have the committee talk about, well, what kinds of issues do you think would be important to be discussed.
Then I think she will take that under consideration. Some things may be within NIH purview and some things may not, but I think it might be useful to hear from the committee on if there were a workshop, what do you think would be useful things to discuss.
Marjorie?
MS. GREENBERG: I am thinking now I did see an e-mail about this but I didn't know exactly -- I didn't understand what it was about exactly. Is NIH's take on this related to investigator initiated data or the kinds of surveys that would be done under contract or --
MS. BREEN: NIH does both, Marjorie.
MS. GREENBERG: Yes, but --
MS. ROBERTS: I don't think Virginia specified and I think that that is probably something that we would want to talk about is what we would like to see covered. Certainly, we can address -- NIH obviously has some authority over any other governmental collection of data or usage of data, but certainly we can get together a group for discussion.
MS. BREEN: Well, I think what NIH has done in the past is it has worked with other federal agencies. Of course, it funds grantees to collect data, but that is usually a one-shot deal or one study. But it also works closely with other Federal Government agencies to fund contracted data collection, for example, the Cancer Control Module is done periodically by NCI funds that -- it is part of the National Health Interview Survey.
So, a drug survey is -- Lloyd Johnson's drug survey is under contract from NIH. So, there are a lot of ways this can be done within NIH. I think that it is not a bad place to, you know, have the discussion go on because there are a lot of possibility in funding and types of activities that can go on from NIH.
DR. MAYS: My understanding is in talking with Virginia that, you know, she sees herself as the convener to start this and has the flexibility to do it, you know, quite quickly. That is all part of what she wants to do is, in putting the planning committee together, is to make sure that some of the right people are there so that you end up with something can accomplish the goal as opposed to is a set of recommendations. People weren't involved and so they have to just kind of sit there.
So, I think that was part of making sure that somebody from NCHS will be on the planning committee.
MS. GREENBERG: The reason I raised the question was because I think the targeted survey letter -- I don't have it in front of me at the moment, but as I recall, it was focused on data that would hopefully be comparable to other surveys, would be comparable to each other, you know, that there would be access to the data, et cetera.
I know that work done under grants often cannot specify or make those kinds of requirements and then the access to the data is often an issue. So, although, you know, that can help fill in gaps, it doesn't really address, I think, the problem and the potential solution that was suggested in the letter.
But I know that NIH does a lot more data collection than NCHS or CDC does. I think of it as a broad kind of --
DR. MAYS: I think it is a look at the wide landscape of this issue and to try and see -- because I know that, for example, there is a secondary data analysis RFA that is out. I know that there is the possibility of, you know, even something as simple as finding out whether investigators, who have this data might want to pool that. So, I think that is that side, but I think there is the other side, which is very specific to what was in the letter. So, I think it is both.
Yes?
MR. STEINWACHS: I guess the other kind of question is do you want to encourage NIH research on these populations? As you know, on an NIH application you do have to defend that you are not including children and you are including certain population groups. It usually doesn't get down to the level of detail of really thinking about the wide variety of minorities and there is no program I am aware of that would actually might supplement your grant if you would add on some of the underrepresented minorities in your research. So, it might even be good to have a discussion about is there a strategy interest that might over time develop at NIH that would say here we can give you some incentives to reach into some of these populations and develop adequate numbers and to the extent we can, we want you to give us the information about the inclusion of important groups that tend to be unrepresented or underrepresented in these studies.
DR. MAYS: I think that is a good suggestion.
Any other feedback?
MS. JACKSON: I have a copy of a letter. Did you say --
PARTICIPANT: A copy of whose letter?
MS. JACKSON: The letter you are talking about, the -- so, this workshop would respond to one of the items to develop methods and procedures to expand access data, that kind of thing, monitoring health care status and health care delivery. I am looking at this item in the letter in comparison to the -- they have got four running issues; the actual surveys themselves. I am wondering if this workshop is going to address the full intent of what was requested in the letter or what?
DR. MAYS: Well, I think that is part of what the discussion is about is what the workshop will do. It is being stimulated by that letter and I think if all the right participants are part of the planning group, then it could, I think, respond to many of the things in there. I am not sure it can respond to all. Some of those, only the Secretary can respond to, like, you know, congressional funding and stuff like that.
But I think in terms of the -- yes, it would be about particularly methodological issues and the collection of the data, policies and procedures around access. I mean, again, they may be able to do things on their -- see, there is a difference in investigator initiated data that is collected versus data that is being collected by NCHS. So, the policies and procedures are actually very different, but one might want to look at both and you might find that, you know, NIH may have more control over -- but it may have the capacity to have carrots to get the investigators to do things.
With the NCHS, those are -- their policies I think are more legislative I think in terms of some of the projects being confidentiality.
MS. GREENBERG: It is partly that, but also I could see some, you know, NIH has the capacity to fund innovative research. We have very limited capacity at NCHS to do that. So, it could develop methodologies that we could apply then in targeted surveys or, you know. So, it could be a very nice, you know, cooperation --
MS. BREEN: It would be very possible to, you know, have coming out of even the working group or the workshop collaborative group at NIH, cross institutes that fund or, you know, put something -- RFA or a PA for methodological development and XYZ.
DR. MAYS: This would be a good time for NCHS to come up with -- because I know there has been a lot of pursuits they have wanted to do, to come up with some of this wish list, for some of the methodological issues relative to collection of the data specific to racial and ethnic minority groups and then to figure out if there is a mechanism. NIH may have a mechanism to do that and then their participants -- on some of the grants I have actually seen an HIV where CDC is listed as, you know, being a part of it. So, I assume there is a mechanism for them to actually be a part of the group that issues the RFA, PA, et cetera.
MS. BREEN: It usually depends on mandate because CDC tends to do more activities within communities and NIH tends to do more plain old research. Increasingly, there has been --
[Multiple discussions.]
There is increasingly a link between community-based participatory research and so, I think, you know, the mandate for the two are starting to mesh more with that. So, it really depends, but monitoring would -- CDC does some of it, obviously, but NIH would probably do -- fund that kind of innovative, you know, methodological research.
MR. STEINWACHS: Another small piece is that NIH funds a lot of the epidemiologic studies to try and put the population based denominator on the incidence and prevalence of disease. Which you would love to have in a CHI would be the ability to use the epidemiologic data against population data to say what is the incidence, prevalence you would expect, what do you see in a diagnosed prevalence or incidence and what are the potential gaps.
So, one of the areas of discussion might be is both the availability of those data, the richness of those data, whether it is in drug abuse or whether it is in cancer, mental health and so on and see if there is a strategy over time to try and make it stronger relative to these --
MS. ROBERTS: I did notice in my conversation with Virginia that she was definitely thinking of this as a methods workshop, a methodological workshop and her focus was on how to link data, how to pool data sets, make data sets or investigators and systems more communicative with each other and issues of access and usability, I think, were certainly there, but I think her main focus -- I don't know if that is NIH's focus or our focus, but her main focus was on linking the data and pooling it.
MS. BREEN: I think linking and pooling is seen as a very efficient and cost effective way to get additional bang for the buck out of data. It is limited in this country, frankly, because we have got all these different surveys looking at different populations. So, you don't have the same individuals to link, which is why geocoding has become such an important strategy and we have started to use that so intensively.
It is certainly worth investigating but it is very limited in this country. It is not Denmark.
MS. GREENBERG: Also, I mean, people are asked different questions, asked them if different ways and, you know. But nonetheless --
DR. MAYS: Eugene.
MR. LENGERICH: I was just going to refer back to I expect the program announcement that you were referring to is from the NICHD, I think, on putting together a data -- making secondary data available to multiple investigators. That portion of NIH is looking at mechanisms to make mechanisms to make regularly collected data available in a wide -- to a wide set of audience.
DR. MAYS: Wasn't it a new requirement that if your budget is over half million, that you have to put a plan in for data sharing anyway? So, I think that is going to be a new -- it is going to be very new in terms of this issue of data sharing once your budget gets pretty big.
MS. ROBERTS: I also think that Virginia would welcome input on not necessarily persons but the players who should be involved in this group, definitely would like to hear from the committee if you have any ideas.
DR. MAYS: Well, definitely NCHS. Is there a specific part of NCHS that we wanted to --
[Multiple discussions.]
We will just defer to Jennifer.
MR. LENGERICH: The Board of Scientific -- their new Board of Scientific Advisors.
MS. GREENBERG: The Board of Scientific Counselors, there might be a --
[Multiple discussions.]
Then would you be on the planning group?
DR. MAYS: We totally have to leave this up to Virginia.
[Multiple discussions.]
What would this group advise?
MS. GREENBERG: I would nominate Donna.
[Multiple discussions.]
DR. MAYS: Any other -- well, there are two centers at NIH that are focused completely on health disparities and one is the Center for Reducing Cancer Health Disparities at NCI and the other is the National Center for Minority Health and Health Disparities, which is at the NIH level out of the Office of the Director.
MS. GREENBERG: We heard from the director. He came to the full committee several months ago.
DR. MAYS: Probably SAMHSA. SAMHSA should probably be involved because of their -- the name is just like health and drug abuse --
MS. BREEN: It is not called the National Household Survey of Drug Abuse. It is called the National Health and Drug Abuse Survey now.
PARTICIPANT: The Office of Minority Health? Do they do research?
MS. BREEN: No, the reason for inviting them would be that they are, in theory anyway, connected to all of the minority research that is going on within DHHS. They know what is going on where.
DR. MAYS: Any other groups?
MS. GREENBERG: I think it would be a good idea to maybe if Virginia could make a little presentation to the Data Council about this. All these agencies you are mentioning are on the Data Council. Then she could solicit interest and ideas and -- give it a little more visibility in the department, too.
DR. MAYS: The VA would be actually very good.
MS. BREEN: And also the --
[Multiple discussions.]
-- Medical Care System Study.
DR. MAYS: Okay. Anything else or we will move on?
MS. GREENBERG: You could just mention that to Jim since he is the executive secretary.
MS. BREEN: One other thing I want to just mention is that nothing, you know, really -- the work is not assigned through the Office of the Director or the Office of NIH. The work is assigned through the institutes. So, it is important to get the institutes to buy into whatever RFAs or ideas that would be part of this process. It is important to go further than just the Office of the Director unless Virginia is going to take it upon herself to work with all of these institutes in this capacity in centers.
She would need to do more than send an e-mail out.
MS. ROBERTS: I don't know that you would need the institutes represented on the working group at this point or certainly not all of the institutes. OBSSR, when it comes to talking about an RFA or PA or whatever, I think OBSSR certainly can take the lead in contacting the different ICs, the different Institutes but -- and the subcommittee can certainly send a letter of support or a request to the institute directors. But I think that -- I think it is well within OBSSR's purview to round up the troops within NIH.
DR. MAYS: But Marjorie, if she does a presentation at Data Council, isn't -- John knows also -- Data Council, aren't all of the NIH grants --
MS. GREENBERG: No.
DR. MAYS: Oh, they are not.
MS. GREENBERG: Maynard has usually -- somebody attends for NIH, unless it is an NIH topic --
DR. MAYS: Okay. Then I think that is noted and I think it will be an issue of whether to reach in at the planning stages, reach in at the workshop stage, but I think that that is a good point.
MS. GREENBERG: But I gather that some of the institutes have more specific programs related to health disparities maybe than others.
DR. MAYS: All right. And our second letter was the letter that we wrote about encouraging the health plans to collect data on race and ethnicity. One of the suggestions I wanted to put on the table is that I think we probably should send a copy of that letter to the various health plans so that they have some idea that this has -- you know, a copy of the letter we sent to the Secretary with a cover letter saying to them we thought this might be of interest to you, dah, dah, dah, dah, dah, kind of thing.
Unless there is there is, you know, someone who sees an objection to that, I think that that is one of the things we probably should do.
MS. BREEN: It sounds great, but it is a humongous job, isn't it?
DR. MAYS: Well, I don't think we are going to do all -- I think we should do the major health plans.
[Multiple discussions.]
MS. GREENBERG: -- HIAA, AAHP, they have combined or something.
MR. LOCALIO: They recently merged. Probably all of Chicago.
DR. LUMPKIN: I am from New Jersey.
MR. STEINWACHS: I am going to have to watch -- protect my knees. I know what they do in New Jersey.
MR. LOCALIO: -- we call it a trade association. You would have a few of those and when you define health plans, I mean, that is not a single type of entity. It is many entities. So, I don't know. I mean, you can call the VA a health plan.
DR. MAYS: I was going to say let's do maybe a twofold thing because I think it is very useful to go to the major health plans. Most of those major health plans are like Aetna. Aetna is already kind of doing this work.
[Multiple discussions.]
Yes. So, I think some of those we might to send a letter to directly because we don't know how long it will take.
MR. LOCALIO: Who represents the federal employees, of which there are many?
MS. GREENBERG: OPM.
DR. MAYS: So, there is a trade association --
MS. GREENBERG: Well, with the American Association of Health Plans and now it has just merged with HIAA. You could send it to them and ask them to distribute it to their members and also probably Simon would be a good source of, you know, short list of --
MR. LOCALIO: Does the VA do this already or should it be included?
MS. GREENBERG: Another good source for, you know, probably plans and addresses would be Kathy Coltin since AAHP has in the past really relied on her a lot on data issues.
DR. MAYS: So, we will get a short list from them and then have a letter and send it to the trade associations and then some of the short list.
MR. STEINWACHS: You might as well send it to the two accrediting agencies, NCQA and JCHO. This ought to be an issue, which I think it is.
MS. GREENBERG: Now, I notice neither of the lead staff are here because they are meeting with the Samoans.
[Multiple discussions.]
DR. MAYS: All right. Let's get back to the agenda. Let's move up again -- well, no, let's wait for just a minute. Let's go ahead and talk about the National Childhood Longitudinal Study because it may be given with the storm we don't know what is going to happen in terms of Leslie, why she is or isn't here.
We have a presentation today for the National Childhood Longitudinal Study. If you look in your materials and we will also discuss it before hand, there was a little blurb that says here about the study and what some of the issues are. As you can see, one of the issues is how to sample. How they sample will be significant relative to the numbers of racial/ethnic minorities probably that end up in the study. If they do a population-based sample, then we are all familiar with what happens in a population-based sample in terms of racial and ethnic minorities.
Does everybody know about this study or should I just back up a little bit? The plan is that this will be about a 20 year study. They are going to enroll people at birth to age 20. The discussion and the difference in the reality of what the budget may be is that the plan is to enroll something like a hundred thousand of pregnant women and follow their children from birth to their 21st birthday.
Part of what this study wants to do -- and if you have looked at the web site, you will see that it has an enormous number of workgroups currently and those workgroups range from -- there is one on social determinants. There is one on health disparities, environmental justice. There is sampling. There is, I think, one on biological measures. This is one of these everything you ever wanted in a study possibly is being thought about it at this point in time.
So, what we want to think about at this point in time are rather than finding ourselves ten years down the pike with a study that we wish they would have, instead we want to recommend early on when the study is underway in terms of formulating the hypothesis, formulating a sample plan. We want to be able to comment on it now so that we get the quality and the kind of data that, you know, we constantly talk about as important in terms of population health.
So, Leslie actually put together a set of questions that she thought would be useful for us to think about, which are also in your folder. This was kind of just at -- kind of at a -- it was actually a letter for us and from that we can actually draw from a different letter, but as you can see, it starts with the National Committee on Vital and Health Statistics, has a Subcommittee on Populations, with the charge of as you drop down below, it says she talked about the subcommittee collaborating with those involved in the planning of this to show program to show our expertise.
She talks about some of the workgroups and particularly the Workgroup on Health Disparities, Environmental Justice and what the mission of that group is, which is to develop and recommend a set of guidelines for adoption by the longitudinal cohort that aims to certify that all research and policy activities related to it are conducted in a manner that ensures fair treatment of all people, including minority populations and/or low income populations and to develop and recommend a component of the study protocol that will address research in education, in health disparities and environmental justice issues related to prenatal, infant, child and adolescent health and development.
I assume that those lofty aims and goals would be something that would fit with some of the interests that we have of population health. She has outlined a set of questions. We have a presentation today and I think maybe what we want to do is just to kind of briefly go through some of these questions and make sure that in terms of the presentations we figure out whether or not these are questions that we want to make sure they are answered, you know, satisfactorily, in terms of advising them about their process for the study.
If you look at No. 1 is what are health disparities, how is that concept defined? NIH hasn't defined that, as far as I know. There is just a big issue. I was just going to say that is one that I don't know that we can expect the people from the study to come in and have an answer to because that really is a difficult one. But it is useful to ask how they are thinking about health disparities, I would think, since that is one of their working groups.
MS. BREEN: One of the things that I noticed in reading this is that -- it is point No. 2 here, how do we measure health disparities or how are we operationally defining the term? Well, that and the previous ones, that one of the things that we in NDCCPS in thinking about health disparities and we are kind of taking the lead in health disparities here in NCI, is to distinguish between studies that actually focus on a research question related to health disparities versus studies that collect data on minorities or groups that may experience health disparities.
So, in terms of thinking about what constitutes health disparities, we thought that was a pretty important distinction to at least think about if not make. I noticed she has made it here. So, they are thinking along those same lines
DR. MAYS: Anything else? There is No. 3, No. 4. Because I want to make sure we also get the mental health disparities.
MS. BREEN: One of the things they also do is to distinguish or she says separate out health disparities research from minority related research and I think this is true of all of NIH to some extent because -- you know, we have to give information on how many minorities are on the different studies. So, you know, we may want to track both of those simultaneously. I think, though, we don't want to be separating them out in a sort of rigid mechanical way.
PARTICIPANT: Which item are you talking about?
MS. BREEN: Well, it is kind of under 1. One seems to be very, very long and right after the NIH definition on the first page, there is another kind of bullet, not bullet. It just says within NIDA, we separate out health disparities research from minority-related research.
DR. MAYS: We want to make sure then that when the presentation is then done that these are some of the questions that are raised.
MR. STEINWACHS: You know more about the study than I do, but my sense is that it is not necessarily -- has to be exactly population represented to do this cohort study and may be recruiting probably out of hospitals in terms
of --
DR. MAYS: I think that is what is on the table.
MR. STEINWACHS: So, it seems to me that you think 1 is like all these, what are the exclusion criteria. So, do you speak Russian, do you speak Swahili? I don't know, but it seems to me that maybe something that raises concerns about how exclusion criteria may deprive a study and the other may be in my different minority groups, is there going to be a bias such that you are less likely to pick up because of the way in which the sampling may be done. Again, we don't know what they are actually going to do, but it seems to me sensitivity to that is important.
You might like to pick up big hospitals and easy to recruit areas sometimes.
MR. LOCALIO: This is not the first time I have heard about this, the survey or the controversy. When we are talking about working with -- Virginia put together -- all of that discussion applies here. I can't understand from the point of view of a child or from the point of view of a member of a population, the Tower of Babel of NIH and NCHS, that doesn't help.
So, I can't understand why NCVHS or NCHS has not been involved. Has it been involved in this? Has NCHS been involved?
MS. GREENBERG: Been involved with this survey?
MR. LOCALIO: Yes.
MS. GREENBERG: I do not know.
MR. LOCALIO: That would be good to figure out why.
DR. MAYS: It is my understanding and I think --
PARTICIPANT: There are individuals in all different groups --
DR. MAYS: Yes. I was going to say it is my understanding that they are like involved in a workgroup, but it is almost like this, where NIH has the resources and the funds to start it, but in terms of the workgroups, that a lot of different agencies are involved in the work groups.
[Multiple discussions.]
MR. LOCALIO: Whoever the people at NIH, in fact, used to work at NCHS --
PARTICIPANT: Who does the list?
DR. MAYS: Well, it is on a web site.
MR. LOCALIO: Of everybody involved and all the people involved and all the players --
DR. MAYS: If you go to each workgroup, it will actually tell you the roster.
MR. LOCALIO: So, somebody has the list?
DR. MAYS: Yes.
MR. LOCALIO: Okay. Well, that is good.
Now, in terms of this particular document that is being prepared here, this is a plan draft to send --
DR. MAYS: No, this document to start with today is really a set of questions that we want to see what the presentation of the study today, whether it addresses a lot of these question.
MR. LOCALIO: And then based on that, what do we want to come up with?
DR. MAYS: I think after the discussion what we want to do is -- as a subcommittee is to reconvene ourselves and ask whether or not we have any concerns. If everything on here is pretty much answered, then I don't think we need to send a letter. If it turns out that there are concerns, whether they on track to accomplish the kind of goals we want, then I think we do want to do a letter and then we want to wait today and figure out also whether or not there are other privacy issues. Then there would be -- the letter would be -- you know, include the full committee.
I will take the last two and then we are going to do mental health.
Yes?
MR. LENGERICH: In the issue of methodology, I would also include follow-up because I would expect that with a group, as with any cohort, follow-up is critical and we could have very different rates of follow-up over time for different populations and their mobility.
MR. LOCALIO: People move.
MR. LENGERICH: And I am not sure they all move at the same rate or are locatable afterwards.
MS. ROBERTS: Poor people move at much faster rates than richer people.
MR. LOCALIO: I hope somebody who is making a choice between a population base or a medical center base survey has considered that issue. People treated at medical centers disappear. They go to some other city.
DR. MAYS: John and then Nancy.
DR. LUMPKIN: As far as I can tell, this is enrollment at pregnancy, which is --
[Multiple discussions.]
-- and a sizeable population won't get to the medical center until delivery.
MR. STEINWACHS: But you can still if you look at this as a multi-center -- sort of like a multi-centered trial, this is a multi-centered cohort, then what you may be talking about is investigators based at these centers going out and recruiting the obstetricians and others, who are part of that. So, you may end up with something that is geographically dispersed, but not necessarily like an epidemiology study.
MS. ROBERTS: I think the issue is that some groups may not be getting prenatal care and won't be included.
DR. MAYS: Exactly.
Nancy and then we are going to move on.
MS. BREEN: It seemed like -- I thought a lot of the points and questions were good here. I hadn't evaluated it from the point of view of, you know, whether it is already being done or we need to emphasize it, though -- it is never heard, especially in a big study like this. But what it says here in the third paragraph down on the first page is most importantly are issues associated with confidentiality. I know we have spent a lot of time on that and it is important.
I think one of the things that we have come up with, which is related to confidentiality is that sometimes it interferes with good coverage of small populations. I think that there is something -- you know, there is a tension between coverage and representativeness of the population and confidentiality. That is really the most important issue, not confidentiality per se.
MR. LOCALIO: I think you are talking about identifiability, rather than confidentiality. Everybody is assured of confidentiality. I don't think there is any argument that nobody is going to reveal people's names, but the issue is identifiability of small populations because you know somebody is in a study and they come from a small town and they have certain characteristics that can be identified.
MS. BREEN: It sounds like a friendly amendment to me if we were to change confidentiality here to identifiability.
MR. LOCALIO: I never hear anybody complaining over confidentiality.
DR. MAYS: Let's quickly talk about mental health here. One of the things that we are faced with consideration of is that -- NHANES -- is that NHANES is considering revisions to its next wave of studies, which begins in -- is it in 2005?
PARTICIPANT: Yes.
DR. MAYS: And as you see from the materials that I gave you there is -- NIMH won't be funding the mental health items that have been there in the past. I was at the meeting and kind of raised this as an issue and then it got brought back here to this group. Don, why don't you talk a little bit about -- since we talked was it the last meeting? I guess it was only six weeks ago, kind of what really are
MR. STEINWACHS: I think just briefly, I guess, two things. One is sort of a personal conviction that mental health ought to be part of a core. That is not a simple issue recognizing, but it is part of measuring health and disease, which is the NHANES objective.
Second is that one of the huge benefits potentially of having it as part of NHANES is it allows you to interrelate physiological measurements and somatic disorders with mental disorders and we know increasingly that we are documenting at least risk relationships. If you have a mental illness, you have increased risk of cardiovascular disease and if you have acute MI, you have substantial risk of depression, post acute MI. If you treat that, you have better outcomes.
So, the linkage with physiological risk indicators, as well as disease, it seems to me is a unique thing that NHANES can do. NHANES, as far as I know -- I stand to be corrected -- but has relied primarily on NIMH to be a sponsor of having mental health items. I did a quick set of e-mails and so it is very incomplete, but just to share with you what a couple of people, the epidemiologists at NIMH and they said they had, you know, discontinued support. They had about six years worth of data.
There was some, I guess, and I will learn more, consideration on their part that now that NHANES is on a two year cycle -- I don't know why that would affect them, but I guess that at least was -- there is a limited adult sample, which they raised, which is for 19 to 39 year olds. So, what they have been funding -- and I don't know whether that is an issue within NHANES or whether it is just making a decision about what you fund, but that adult sample doesn't take you up through all the adult years, which, again, if you are talking about sort of a core commitment, it would be great to have.
Then she said -- and without being very specific
-- there were some issues in their mind around the mental health measures in the child sample. I know there is work going on trying to improve those measures. At the same time, you know, if you sort of look at evidence, you know, people talk about what looks like epidemics of autism in this country among children, hyperactivity and disorders and others seem to be rising very rapidly. Depression prevalence is increasing over time. So, it seems to me you can say, well, what do we need to understand. Well, we need to understand a lot about what is an increasing burden of mental and emotional problems that both effect kids and adults and what are the correlates, the precursors and the risk factors.
So, we did ask Ed at the open meeting yesterday about -- Ed Sondik -- about sort of this general area of mental health at the core and health more broadly and I think very nicely he suggested that we work on it. But I think the concern was was there something we should be recommending or trying to do as NCVHS and the Population Committee to see if there is a way to have some mental health items included in the next round of NHANES. So that was, I think, where we left it.
DR. MAYS: Let me ask two questions. One of you as one of the committee, have you heard any updates or anything since -- I don't recall the name, the planning group -- the forum -- at the forum when I raised it and organized a little breakout session on mental health, has there been any other consideration of this?
PARTICIPANT: I would say no because -- well, at this point what we are doing is we had for the past year, for the past six months, we sort of had an open period where people submitted proposals. At the present time, we are reviewing proposals. There have been no proposals that have been on anything with regard to mental health from anyone. So, that is where we are.
MS. BREEN: I am sorry. I kind of lost where we are. It was the forum you are talking about, is that to plan the next round of --
PARTICIPANT: Not really. It is more to talk about what sorts of things might --
[Multiple discussions.]
-- but it wasn't really to plan the next -- it was sort of like what is the future of HANES. It wasn't specifically to say exactly this should be on the next HANES. Maybe there was some misunderstanding --
DR. MAYS: We were invited.
PARTICIPANT: No, people were invited to give you an opinion, but it wasn't necessarily this is what should be on the --
[Multiple discussions.]
MS. BREEN: -- a general meeting. It wasn't a decision-making meeting for 2005.
DR. MAYS: It wasn't a decision-making meeting. We were invited to give our opinions and I thought they could be very specific --
[Multiple discussions.]
PARTICIPANT: -- very open and then, you know, people came from a broad spectrum of --
DR. MAYS: They even had Canada there.
MR. HUNGATE: -- and so if it is stupid, point it out, but how does the questionnaire process address functional behavior and health status? Is that Step 36 or something like that imbedded in any of the questions? Because it seems to me that is a way you can get at mental health.
DR. MAYS: There is something about limitation of activity measurements.
[Multiple discussions.]
MR. HUNGATE: -- to deal with that and they have got pretty good science behind it.
DR. MAYS: Eugene?
MR. LENGERICH: This is the question. Would this be a clinician assessment or a self report that you would propose or are you that specific at this point in time?
MR. STEINWACHS: I don't think we were that specific. I think what is in here now or has been, I guess, has been really a questionnaire.
PARTICIPANT: Well, currently, there is more diagnostic type interviews that are long and that are --
MR. STEINWACHS: But it is a set of questions that are to the parent or to the child.
PARTICIPANT: Well, for the kids there is both. We are using the diagnostic interview schedule for children and we are looking at about four different things that the children themselves answer and that is depression, generalized anxiety, panic and eating disorders.
MR. STEINWACHS: There are also sort of structured clinical interviews that can be used, which I was trying to separate from the very structured interview that does lead you to a diagnosis and then there are screening kinds of instruments. That is the advantage of NHANES is, you know, that you have that clinical component --
MS. BREEN: Wait a minute. Is it a clinical or an examination component? I thought it was an examination component. Who does this stuff?
PARTICIPANT: It is an examination component. It is done by an interviewer and mobile examination site. It is not done at the household level.
[Multiple discussions.]
DR. MAYS: In order to do this, you can be a lay person, but you just have to be trained --
PARTICIPANT: It is computer driven.
[Multiple discussions.]
MS. BREEN: What about like the samples of blood and the samples or urine and those kinds of things? That is what I was thinking in terms of the examination component. I think those are -- you know, MedText(?) is the best. There wouldn't be a trained psychiatrist, but people who could --
[Multiple discussions.]
PARTICIPANT: -- but basically it is technicians that are trained.
MR. STEINWACHS: Let me help this discussion maybe a little bit is that we do have a set of instruments in the field that can be used by trained interviewers that give you for epidemiologic purposes good estimates of diagnosis, either lifetime or current diagnosis for major disorders. That is what is being used here. So, it seems to me that the issues on Table 1 is should mental illness or mental health be part of the core of NHANES as you would think of taking a blood sample and other things being part of that core. I think that is a long term sort of a perspective.
In the immediate more short term I guess is the fact that we are faced with a situation that currently it is not expected in the 2005 NHANES that there would be any mental health items. So, we wouldn't have any information about mental health and that may be more an issue with NIMH's willingness to put forward proposals, which may or may not be too late.
DR. MAYS: Let me do two things, which is Suzanne has had her hand up. So, let's hear from Suzanne and then let's try and make a decision. I think this group is clear about for the long haul this is something they want to discuss. So, I don't think we have to worry about that now, but in the short haul because there is -- you had in here a time line and she is already saying the door is closing. Whether or not this group wants us to follow up with NIMH and see if in talking with NIMH we are able to get them to commit to something -- we don't know what yet because I think it is a difference between whether it is, you know, something as simple as, you know, the SF or something as complicated as the CD, but it is like at the point we are at now, there is nothing that is on the horizon.
So, those are the two things. So, let's hear from Suzanne and then we will try and answer that question.
MS. ROBERTS: I think I wanted to -- I just want to say that the question of including -- this is critical. I think it is critical for this committee and for health disparities research in general and not just because we should include and know about mental health among different populations, but the research directions and health disparities for some areas are increasingly looking at the links between stress and health disparities.
So, not having information on things like anxiety and depression are really, really important. That is a real gap. The other thing is there is an increasing interest in early childhood experience, in early childhood health as it affects later disparities in life. So, not having that sort of information as to ADHD and so on at an early age, everybody is at a disadvantage. That whole research
effort --
DR. MAYS: What is different about intent because NIMH could come back and say we are actually collecting a lot of this data and it is true. They are collecting data just in terms of mental illness. But what they don't have
-- and this is what you were talking about, is they don't have the physiological data. And they don't also have the capacity if they continue to keep collecting the data because you haven't -- is actually to be able to, I think, have a large enough sample to be able to combine samples.
That is the other thing we have to remember of racial and ethnic minorities, so that, again, we don't end up -- because you only have an n of 5,000, right? So, the issue of numbers also becomes important. So, while the data may have been collected in the past six years, I don't know if the NIMH is satisfied about how much it has been used yet, it is still -- for racial and ethnic minorities, probably would be useful if we could get them to continue.
Unless I hear an objection, I think we should continue to pursue talking with NIMH to fix this for the short run. For the long run, I think what we need to do is to have, you know, some further discussions about the in general in health statistics understanding the relationship between mental health and health and understanding whether or not it is even permissible to not collect mental health and say that we actually can make comments about the health of a population.
Because I think we are making comments about the disease of a population. We are not really making comments about the health of a population.
MS. GREENBERG: I just wanted to ask Debbie, I know there are some -- I think there are some questions in the National Health Interview Survey with relation to depression and maybe --
[Multiple discussions.]
Actually this committee was involved with that, I think, going back some time. Now, the HANES issues, are those questions included in the interview portion of HANES or --
PARTICIPANT: No. Nobody has said that maybe, you know, you should put them in HANES. There has not been any rules meant to --
DR. MAYS: Marjorie, I don't know if we would all agree that those are the set of questions.
[Multiple discussions.]
MS. GREENBERG: No, I wasn't saying -- I was just wondering because I knew that even in the interview of HANES because we don't use the same sample, right? So, it is just potentially zip, I mean, nothing on mental health.
If this is a lot of concern to the -- you folks at -- who are doing HANES --
PARTICIPANT: I guess we see it as a whole. The other thing is there are potentially other agencies who could --
[Multiple discussions.]
MS. GREENBERG: It wouldn't have to be NIMH.
PARTICIPANT: NIMH has funded HIS and HANES over the past six years and, you know, frankly, they are not getting a lot of support in epidemiology period. So, there are potentially other agencies that could be interested.
DR. MAYS: I was going to say I suggested the National Heart, Lung, Blood because of the relationship to cardiovascular disease. But I think there is a significance here if we can get NIMH on board. I think it has a home constantly in the institute because that is where mental health is.
That also then is the place where they are likely to have funds to do the analyses and encourage them -- I mean, so it has -- I think if we can start this, fine. If we get turned down, then I agree because I was the one that said Heart, Lung and Blood --
[Multiple discussions.]
MS. GREENBERG: Is there an office at NIH that convenes across institutes to discuss the generic issues like this?
DR. MAYS: That is a suggestion, I think, about whether or not to ask Virginia to think about it. But I think we start at NIH and then it is like you know people, I know people. So, it is like let us -- since there is a time issue, let us start there and then ask Virginia to back us up. How is that?
MS. BREEN: One of the things that you mentioned you weren't too keen on the Kessler short form that is being used in the NHIS and if either there is a better way to evaluate out there or there needs to be, then I would add that to the recommendation as well, that -- I mean, and that is another reason for having all of this housed in NIMH because they can do that kind of background research. They could send out RFAs. They could send out PAs, too, to have more research done on a good simple indicator that could be used on the various questionnaires that we have.
Because I think -- I am not sure why they picked the Kessler indicator, but I think part of it was because it was easy and it was there. So, if there is not a lot out there to choose from and there is not good science on which is the best, that is the way they will pick them.
DR. MAYS: AHRQ is actually, if I remember correctly, I think trying to look at good instruments. So, I think we may want to actually talk to them because they, I think --
MS. BREEN: For mental health?
DR. MAYS: Yes. This came up when I was at the advisory meeting, that they have -- so, I think, let's go to them and see what they have to say and then make this a broader discussion because I think the issue of what to ask is probably, you know -- it is the difference between are we going to focus on disease or are we going to focus on quality of life, are we going to focus on stresses and strains. So, I think it would be great -- this isn't NHANES. This is just in general.
PARTICIPANT: I would say that in terms of our whole process and experience with mental health, too, is we have had the problem in that we haven't had off the shelf, ready to go diagnostic instruments to use. All along the way, we have had problems with the instruments, with the algorithms, with those kinds of things. So, that would really be key to say, okay, this is, you know, known. This is, you know --
DR. MAYS: See, I think some of that work they are going to do right now with Kessler coming out of the field and that is part of what I am saying in terms of the one that is in now. It will be interesting to see if they are going to change some of the algorithms. There is some discussion of that.
The reason I know this so intimately, we are trying to go in the field and we don't want to go in the field with something that, you know, in the middle of being in the field everybody changes it. We are trying to push everybody to tell us, you know, the answers.
MS. BREEN: What is the status on the hearing questions and the draft of the agenda for the Subcommittee on Populations hearing in San Francisco?
DR. MAYS: It is in your folder. We actually went through it because we changed the agenda around. So, we went through --
MS. BREEN: Oh, before I came?
DR. MAYS: Yes. I can give you a quick --
Well, you know, that they are meeting next door, the leadership group. Well, they call it the Pacific Islander Leadership Group. Is it only Samoans?
MS. BREEN: I understand that they really represent the Samoans, but when you look at who all is in the group, it is much broader than that.
[Multiple discussions.]
Is that why Dale is over there now?
DR. MAYS: Yes, Dale and Audrey are there and that is exactly one of the things I told them to do, offer them the opportunity.
[Whereupon, at 10:15 a.m., the meeting was concluded.]