[This Transcript is Unedited]
Hubert H. Humphrey Bldg.
200 Independence Avenue SW
Washington, D.C.
Call to Order and Introductions
CDC Future Initiatives
Privacy and Confidentiality Issues for Targeted Surveys
Edit, Discuss and Finalize Letter on Health Plans
DR. MAYS: Let's drop now to where it says reminders. I did that for two reasons. One is, I was hoping that we wouldn't have to spend two hours on getting these letters edited, but if we did, we would have the amount of time there. And I wanted to see if we could talk about a couple of these other things.
When Marjorie comes, I want to ask her to talk a little bit about the CDC futures initiative. It is a request that came from CDC for them to get input from the public regarding their future. So I asked Marjorie whether or not this is something -- given that we are sitting on these letters that have a lot to do with CDC and what we hope they will do in the future, I asked Marjorie whether or not she thought it was appropriate for us to be able to comment on it. I think she was checking on that. She thought it was a good idea, and I think she was checking on what we should do. I think she was even thinking of asking Julie Gerberding to come to a meeting. So let's see what she says about that piece. I want also while she is here to use a little bit of her time so that we can get some clear understanding about the planning aspect of the November hearing. My hope is that we will be able to do these letters fairly quickly, and spend some time on at least some general notions about the November hearing that we have, because it is not put together, and we are at the end of September, so I am a little concerned.
And then to talk about the other things that we have here, such as the national childhood longitudinal study letter that came up last time, that we wanted to make that a separate letter. As I understand, there are also issues about windows of opportunity. If we wait too long, they are going to chose the sample. The two sample plans that they have will make a difference in terms of the kinds of comments that we have been making about what type of data we would like to see. So that is another one of those letters where we should decide whether or not we want to get that done. So hopefully Leslie Cooper will be here.
We should talk about the populations report. We can talk about the Paul Ong report. I didn't know if it was appropriate to put a name there. I don't know if I should call it by the topic or a name. These things are public, and I didn't want to get in trouble. So if it needs to be different, then just tell Gracie to change it from the Paul Ong report to the AP NHOPI report.
PARTICIPANT: We probably should refer to it -- it may be safer.
Gracie, before this is the final final, can you instead take Paul Ong's name out and make this the AP NHOPI report?
Since Marjorie isn't here -- she is here, she is just upstairs in the other meeting, and we may have to remind her.
PARTICIPANT: She is getting coffee. She is coming.
DR. MAYS: Oh, okay, fine, then she is on her way. She was going to do three different meetings.
Let me talk a little bit about -- Russ has an issue that he is going to bring up. Eugene also is going to bring it up within the context of this privacy and confidentiality. So the time should actually be 10:15 to eleven, because Mark is running a committee meeting from eight to ten. So I told him I would give him a few minutes to finish up and get here at 10:15, and he was fine with that.
We are excited that Mark is going to join us. We keep coming up against some privacy and confidentiality issues. So Russell is going to raise the issue that has come up, because it has implications for our targeted survey. I have also asked Eugene to also raise that. But again, all this is within the context of this letter.
So I think what we should do, since it looks like we have most people here, let's start with introductions. Good morning. We'll start with Nancy.
DR. BREEN: Good morning. I'm Nancy Breen.
DR. LENGERICH: Gene Lengerich. I'm from Penn State University and member of the subcommittee.
DR. STEINWACHS: Don Steinwachs, Johns Hopkins University.
MR. HITCHCOCK: Dale Hitchcock, HHS, member of the subcommittee.
DR. MAYS: Good morning.
DR. SCHWARTZ: Good morning.
DR. MAYS: Who's that?
DR. SCHWARTZ: It's Harvey.
DR. MAYS: Hi, Harvey. You want to introduce yourself? We're just at your place at the table.
DR. SCHWARTZ: I'm Harvey Schwartz.
DR. MAYS: Good morning.
DR. SCHWARTZ: Good morning.
MS. BURWELL: Audrey Burwell, Office of Minority Health and co-lead staff for the subcommittee.
MR. LOCALIO: Russell Localio, University of Pennsylvania and member of the subcommittee.
DR. KAMBIC: This says Robert, but call me Bob, Kambic with HHS.
DR. MAYS: And we have Peggy. When Peggy comes back we'll have her introduce herself.
Good morning, all. I think what we should do, in lieu of waiting for Marjorie, let's start with the health plan letter. You have copies of it. It has been revised. Harvey, they are going to e-mail you the letter.
DR. SCHWARTZ: Thank you.
DR. MAYS: Good morning.
DR. GREENBERG: Hi. I'm sorry, I ran into too many people when I went out for coffee.
DR. MAYS: We figured Peggy was there. Peggy and Marjorie, can you introduce yourselves?
DR. GREENBERG: Peggy?
DR. HANDRICH: Peggy Handrich, Wisconsin Medicaid and member of the committee.
DR. MAYS: Welcome.
DR. GREENBERG: I'm Marjorie Greenberg, NCHS, CDC and executive secretary to the committee.
DR. MAYS: Great. Marjorie, I told them that you can only stay for a short time, so I wanted to deal with a few of the things that we probably can best use your time to deal with.
Can we start by talking about the e-mail on the CDC futures initiative, and a little bit of your thinking about whether that is something you want to pursue, that is good for us to pursue, and whether it is something to pursue at the level of the full committee or at the subcommittee level.
DR. GREENBERG: I'm not getting my e-mails for some reason on my Blackberry since Isabel, but did Steve respond? You said something about it, and then I responded and said that I thought that it would be appropriate for the committee to provide input back to Dr. Gerberding. I cc'd Steve, since he is the CDC liaison, what he thought, but I didn't know if he responded.
DR. MAYS: I didn't get to go on my e-mail yesterday, so if he responded as of yesterday -- he was at the meeting with us yesterday.
DR. GREENBERG: He is here, of course, so we should probably ask him. I think as the CDC liaison, he would be the appropriate person probably to facilitate that process.
It would seem that this would be -- we would want ultimately it to be from the full committee, but it seems this would be the appropriate subcommittee. It is pretty broad. Right now, they are surveying the employees or the staff of CDC.
DR. STEINWACHS: Could you tell a little bit more about what the framework is? Is this a strategic planning effort?
DR. GREENBERG: Yes. The new director -- well, she is about six months now, Julie Gerberding, she has launched this futures initiative, where she really wants to be getting wide input from within the agency, and much more broadly traditional partners and non-traditional partners, on the future of CDC, how we should be going forward in the next decade or whatever, in a whole broad range of areas -- public health, traditional public health, surveillance, bioterrorism.
DR. BREEN: So it is an attempt to establish priorities within CDC? Or what is the purpose of the futures initiative.
DR. GREENBERG: You circulated a -- it is very broad.
DR. MAYS: Right, this is the e-mail that I got from a couple of the lists that I am on.
To me, it seems like it is a strategic planning effort on her part.
DR. GREENBERG: It really is.
DR. MAYS: What she is doing is reaching out beyond what is typical for CDC to do, to hear about what direction people think CDC should be taking, what kind of initiatives CDC should be involved with.
The e-mail that I got -- and that is why I thought Marjorie might know more in terms of being on the inside.
DR. GREENBERG: I have only received these e-mails. I have not been part of the process.
DR. MAYS: Oh, okay.
DR. GREENBERG: They have a number of work groups, I think. A few people from NCHS are on them, but I have not been directly involved.
I think it is also to get what CDC is doing well, what CDC could be doing better, that kind of input, too. So it is very broad.
DR. MAYS: There is a site you sign on to also. Somebody else told me that, that you go to. They have been doing these planning processes. I have to give it to CDC; they have really been trying to figure out how to use technology to do strategic planning, and I think they are really hitting the mark on this.
They have other initiatives I have seen them do this on, where you comment and they keep doing this distillation of the comments. They do a lot of this with technology, so they are getting broad input.
I think Julie Gerberding is taking advantage of CDC having done this in some smaller planning efforts, like they are doing it on their racism dialogue, they are doing it on eliminating health disparities. They have a couple of ways they have been doing this. So I think she is doing the same thing, but more broadly.
I couldn't get to the sign-in part of whatever, in terms of doing it, that someone told me about, so I don't know exactly what happened. But I figured that given that we keep commenting so much about their surveys, and NCHS is a part of CDC, that it might be to our advantage to weigh in.
If it is a process like this other process, the distillation of several people weighing in on things, it really does make an issue rise to the top. So that was part of why I thought it might be strategically important for this committee, either this group or the larger, to think about weighing in. But I just didn't know if it is appropriate. Usually we just go to the Secretary with things, so I didn't know if it was appropriate for us to do this.
DR. GREENBERG: The committee has sent comments directly to AHRQ, to CMS. We can always cc the Data Council, which is probably not a bad thing to do, anyway.
One thing I think we should probably talk to Steve about, I thought we should -- I don't know if we would be successful, but try to get Dr. Gerberding to come to the full committee and talk a little bit about this initiative, and particularly the health information system component of it.
DR. BREEN: Great idea.
DR. GREENBERG: And if she is not able to come -- we have had people from CDC obviously, management or leadership, in the past, but we haven't had anybody since she took over. She has a new leadership team.
DR. MAYS: So why don't we then chat with Steve if he is here today.
DR. GREENBERG: I'm sure he is.
DR. MAYS: Okay, we'll chat with him. My sense is that maybe what we should do is try and do this for the full committee, see if we can get Dr. Gerberding herself to come in, or someone to represent her. I think what might be important is for Steve to make sure that she understands the various subgroups that we have. So she talks about health information, she talks about surveys, all the things that we would be interested in, her giving us some sense of the range of thinking, then that can help us to decide how to comment. So that would be my suggestion.
DR. GREENBERG: A related topic. Now I realize John is gone. Did you and he have a chance to talk about the Board of Scientific Counselors?
DR. MAYS: He finally asked yesterday if I could do the 10th.
DR. GREENBERG: I got a little note to him and I said, what are we doing about this? Can you?
DR. MAYS: Here is what it is. I kind of gave up, because I thought he was going to do it because it was so late. I gave my schedule for Fridays, because that is my research day to dissertation students. So I have to when I get back see whether or not they scheduled dissertation orals on that day. I gave them all these Fridays that I wasn't traveling.
So I'm free, if not. I can rearrange my research group. But if a dissertation is scheduled, it is kind of bad if I went -- I make three other people rearrange their schedule.
MR. HITCHCOCK: Does anybody know this issue?
DR. BREEN: No. Is Vickie going to be on the Board of Scientific Counselors?
DR. GREENBERG: It's not a question of being on the board of it. The NCHS Board of Scientific Counselors has been constituted, but we had agreed that there would be a liaison from the NCVHS to the Board of Scientific Counselors. Actually we had even had some discussion at one point about even having a person on both the NCVHS and the Board of Scientific Counselors. That didn't happen, but I think it is essential that we have a liaison there at the meeting.
Did he say if you are not available that he is not available? Or did you get to that?
DR. MAYS: I didn't ask him. I told him first I would look to see whether I could still do it, because I thought he had decided to do it.
DR. GREENBERG: He had never responded to us on this, right?
DR. MAYS: Right, but I assume maybe you knew or something.
DR. BREEN: So you and John would be liaisons?
DR. GREENBERG: One person would be a liaison.
DR. MAYS: I think the thinking at the executive committee was that it would either be the chair of NCVHs, or it would be the subcommittee. So it is one of those two that I think it was thought would be probably the best bet.
DR. GREENBERG: And frankly, because we had not come to closure on which one of you it would be, we have not really communicated with Dr. Sondik about who is coming. Once we know, then I think we would want to be clear that it is not just that we want somebody in the audience there; our expectation there would be that you would be at the table as the liaison from the NCVHS. I have no reason to think that won't work.
MR. HITCHCOCK: Actually, a distant past member of NCVHS who is on that committee, Fernando Trebino, was part of the --
DR. GREENBERG: Oh, is he on the committee?
MR. HITCHCOCK: Yes.
DR. GREENBERG: Oh, really?
MR. HITCHCOCK: What date is that?
DR. GREENBERG: It is October 10.
DR. BREEN: Are you going to come?
DR. GREENBERG: That afternoon I have to fly to a wedding in Buffalo, New York, but my intention is to at least try to be there in the morning.
MR. HITCHCOCK: Bring your boots.
DR. STEINWACHS: It will be snowing by then in Buffalo.
DR. GREENBERG: Probably.
DR. MAYS: So as soon as I get back, I can actually find out, or if I get time today, I can call and find out. With the time change, I haven't been able to call to find out.
DR. GREENBERG: So that will resolve that.
DR. MAYS: So you will take care of that. Anything else, Marjorie, while we are doing this?
DR. GREENBERG: No. My main outstanding issue -- I know you have got to get your letters finalized, but I think it looks like both of them are going to go forward, so that is good -- is what we are going to do about the subcommittee's report, because we need to get back to the contractor and the consultant, et cetera.
DR. MAYS: I think that is what I want to try and get to today, in terms of -- when we get these letters done, is talk about our workload. We have a November hearing, we haven't planned it, so we really have a lot to do.
DR. GREENBERG: I'm happy to report that I now have power at home.
DR. STEINWACHS: So you have no reason to come to work anymore, now that you have power at home.
(Simultaneous discussion.)
DR. GREENBERG: When I returned from the NCVHS dinner, I was greeted with power, so I'm very happy.
DR. STEINWACHS: Hear, hear.
DR. BREEN: Marjorie, the report on the Asian American, Native Hawaiian and Asian Pacific Islanders --
DR. GREENBERG: No, I was thinking of the report that Olivia Carter-Pokras is working on.
DR. MAYS: Marjorie, we are going to use a little of your time when you are here now to move to the November hearing. I think it would be good while you are here for us to just talk about that a little bit, so that we are all clear.
The things that are on our plate -- I'm going to do this very quickly, because Marjorie missed the very beginning -- is the NCLS letter. Leslie Cooper isn't here today. That is the national child longitudinal survey. We had talked in this meeting about sending a letter to them.
That is going to be a very major survey conducted by the NIH. NICHD in particular is the lead on that. That survey will enroll -- well, I shouldn't say, we don't know.
DR. STEINWACHS: It depends on how much money they get.
DR. MAYS: Let's not go there. It depends. The problem is that NICHD has proposed that they enroll a cohort of kids starting at birth, and they will follow them -- at least what is set now -- and the reason I keep pausing is because all of this is up in the air, some of this has to do with money, but they would follow them for 20 years.
Now, the question that we would be concerned about it, if the federal government is about to launch a new survey that is going to be its survey, we don't want to have to spend time constantly writing letters the way we do about some of the other surveys. Instead, we want to be in the forefront right now when they are planning.
What they are currently doing is, they are engaging in putting out -- funding for small studies to help them determine some of the methodological issues. I think we would want them for example to consider the inclusion of race and ethnicity, we would want them to consider this issue of, will you have racial and ethnic minorities in the study. How you sample is a big issue.
So right now, what is on the table is, there are two different ways to sample that they are talking about. One would be a population-based sample, which will get us where we usually are in terms of other surveys, which will mean that in terms of the diversity that we might be concerned about, they may not have a large number of individuals.
The other that they have talked about is surveying the hospitals or some kind of care setting. In that instance, they may even be looking for very specific conditions or occurrences. That might get you more. So there are some issues that we want to think about here.
DR. GREENBERG: But this is longitudinal?
DR. MAYS: Yes, they are following them for 20 years.
DR. GREENBERG: There would be a supplemental survey? I don't understand.
DR. STEINWACHS: It would be clinical data.
DR. GREENBERG: Yes, clinical data as well, so it is not either-or; it would be both of them.
DR. BREEN: Some of the details haven't been figured out.
DR. MAYS: I was going to say, that is some of it.
DR. GREENBERG: Is this going to be done under contract or under grant?
DR. MAYS: Oh, it has to be a U. I'm sorry, U is an NIH thing.
DR. GREENBERG: Does it even come before the Data Council?
DR. LENGERICH: What is NCHS' role in the planning?
DR. GREENBERG: That is what I am wondering, if NCHS has any role.
MR. HITCHCOCK: They have members on the various committees and work groups.
DR. MAYS: I think there are 21 or 22 work groups. This is really an NIH study, so it is like, other than --
DR. GREENBERG: Yes, but we play quite a big role in the children in America -- that annual report, too.
MR. HITCHCOCK: Funding is a big issue on this.
MS. BURWELL: It seems like this committee from its hearings has concluded that targeted population-based sampling is probably the best way to get minority populations that you want, because then you figure out what mix you want and where they live, and start sampling in those places.
That is what we have been talking about, and that is what we are advocating in our special populations survey. Would we want to do that for purposes of this survey as well? There is a certain happen chanceness, as you pointed out, for either doing a national population-based survey with sampling, or just doing hospitals or some other way, where you are hoping to get certain conditions, or hoping to get certain populations out of those hospitals. Location would help there as well, but we may want to look at wellness as well as sickness.
DR. MAYS: Right. I think what we want to do is to hear from them and ask the question, how they plan to -- I almost would say that what we want to do first is to say, we are sure you are considering these issues, can you share with us a little bit about how you plan to address these things that we think are critical, given that you are about to start.
I think everything is kind of up in the air. We could either do one of two things. I'm sorry Leslie Cooper isn't here, because I know some, but not all. That is, there is actually a health disparities subcommittee. That is the committee she is on. I know some of what is emanating from there, but there is a social determinants subcommittee. There is another one, a community subcommittee. So there are all the -- like I said, there are 21, 22 of these that are relevant.
DR. GREENBERG: This sounds like such a big effort, that it might be even good for the full committee to have a re-think on this survey. Certainly the issues that this subcommittee is dealing with right now about targeting and racial and ethnic minorities and primary language and all that are very relevant to the survey, but the whole broad range of population issues would be very relevant. I think as you said, this is an opportunity to get in on the ground floor maybe of something that could be very big.
DR. MAYS: Here is what I would suggest, if you want to do that. If you could accommodate it at the November meeting, that would be fine. But otherwise, I'm afraid that if we wait until February --
DR. GREENBERG: March.
DR. MAYS: I'm sorry, March, they are really moving along. As I understand it, now is the time when the little studies are going to be put out for contract or whatever. By March, they will have decided to sample it.
DR. GREENBERG: That wouldn't be in lieu of this subcommittee, really. Even if there were a presentation to the full committee, probably it would be re-served back to the subcommittee, because it would be more in your domain.
I was just thinking that if this really does take off, I think this would have broader interest. I'm thinking that Richard Harding is not a member of this subcommittee, but he is a child psychiatrist, and certainly would be interested. There is a lot of interest in the privacy subcommittee in schools and issues related to schools and minors, and privacy and confidentiality and exposure issues there. So for sure they would be interested. There could be interest in Standards and Security, too.
DR. MAYS: Here is what I would suggest. Just tentatively, let's throw it in the hopper for November. When we do the planning, we will see whether it can be accommodated. I will check though on the pace of things, and see -- because having a letter ready for the November meeting, where you hear the presentation and then decide about a letter, if there is some need to move ahead.
DR. GREENBERG: But one thing you might want to think in terms of doing, we are going to get this letter approved on targeted surveys, not the health plan, the other letter, then you have got that letter, it has gone to the Secretary. You could put a cover letter on that and send it to the NICHD, whoever is taking the lead on this, and say, attached is a letter that the National Committee has just sent to the Secretary, and we feel that the issues identified here are highly relevant for this survey, and blah, blah. So you just piggyback on that.
DR. MAYS: Well, I will work with Virginia, because I have a feeling this should also go to Zerhouni.
DR. GREENBERG: Who?
DR. MAYS: Zerhouni? Isn't that the Director of NIH?
DR. GREENBERG: Okay, fine.
DR. LENGERICH: I also wonder if it is going to come up at the NCH Board of Scientific Counselors as well.
DR. GREENBERG: I don't know. But probably it is going to be focusing more on NCHS surveys.
DR. MAYS: This is one of those that is NIH's thing.
MR. HITCHCOCK: You were at the meeting for the NHANES survey, right?
DR. MAYS: Yes.
MR. HITCHCOCK: Isn't there a report on that that would be of interest to us?
DR. MAYS: Yes, I'll quickly do that. I went to the -- NHANES has a meeting every so many years when it is planning its surveys. This is the planning for -- I think it is 2005 or 2006, I can't remember the year, and it is a five-year range in terms of planning. So if they are going to change something for a survey they start planning, and then once it is in, it is there for at least five years.
I don't have a list with me, but they gave us a list of those things which are going to be dropped on the survey. In that capacity, I was actually concerned about the mental health aspect, dropping -- but it is okay. What they are doing is, they are dropping the -- there is a scale called the CEDI, which they use to do some screening for mental health diagnosis. Their perspective about it is, NIH isn't paying for it, and we're not sure we can get it in.
What you had to do is a planning process, where you put up things that you wanted, and then they made work groups. So we ended up with the mental health work group. What we talked about was inserting things like stresses and strain and depression and anxiety disorders still, because those have a very clear -- science has really demonstrated the relationship between those and some of the disease outcomes, like cardiovascular disease, what else, obesity, et cetera. So we have to see where it is going to go.
But I would say that for this committee, probably the issue relative to NHANES is, it is doing what it is going to do. I didn't see where we would be worried about anything. The biggest worry to me was whether or not they will have the money. I'm not sure what we can do about that. But they are looking for partners for some things. So it is a money issue.
DR. GREENBERG: You brought up the mental health issue. I was in a conference call on Monday, which I won't go into the etiology of it, but --
DR. MAYS: You sound like a clinician. I'm sorry, go on.
DR. STEINWACHS: She has learned over the years.
DR. GREENBERG: One thing that came up was the extent to which the National Committee addresses data issues related to mental health, substance abuse and alcohol abuse, et cetera.
I was just providing a little history, that in the early '90s as some of you know, there was a subcommittee on mental health statistics, and of course there was a subcommittee on minority and health statistics, and there was a subcommittee on long term care statistics, aging and long term care as well. Then when we got the new charge and all the HIPAA responsibility and everything, this was all put into what Lisa and I used to refer to as United Nations, because everything was put into one subcommittee, and then trying to -- she referred to it that way, because trying to balance all those different issues was impossible, almost.
DR. STEINWACHS: We knew Vickie could take care of all of it.
DR. GREENBERG: Yes, right. So they focused on functional status, which might have been under long term care in the past, and some minority issues. The only way you can deal with it obviously is to have some specific projects and try to accomplish something in those areas, rather than trying to address everything at once.
But since that change, the committee had not really been very involved with mental health statistics or mental health issues, and it is my perception that it continues to be a problem of mental health issues in particular and mental health data issues not being well integrated with more general health statistics, health information.
I know in the past, I have also heard that there are a number of issues of even mental health, substance abuse and alcohol abuse not being well integrated with each other. That came up certainly when we had the mental health subcommittee.
DR. STEINWACHS: These are all totally unrelated disorders, did you know that?
DR. GREENBERG: All unrelated to what?
DR. STEINWACHS: Disorders.
DR. GREENBERG: Oh, right.
DR. STEINWACHS: They may co-occur, but the Institutes know they are unrelated.
DR. GREENBERG: When the committee had a subcommittee on mental health statistics, it really did some good work, I thought. Of course, given your knowledge and expertise, --
DR. BREEN: But aren't there some underlying measurement issues that need to be dealt with? I think the committee should deal with it, I'm not arguing against that, but I think that there is a whole lot of work to be done in that area.
DR. GREENBERG: There is a lot of work.
DR. MAYS: But what Marjorie is rasing as an issue is, here you have something like NHANES dropping mental health.
DR. GREENBERG: Yes, that concerns me greatly.
DR. BREEN: Let's think about this, because NHANES is dropping mental health, keeping blood pressure. Blood pressure is pretty easy to measure. Now, mental health, do we have good agreed-upon measures?
DR. GREENBERG: Yes, particularly for depression.
DR. BREEN: Or are we using indices that raise a lot of questions? Because there are other areas where we are using indices that are not well accepted, and may not be measuring well in all populations.
DR. MAYS: I'll let Don comment on that.
DR. BREEN: is that your area?
DR. STEINWACHS: I'm trying to get mentally healthy, so that is why I focus on this area, because it helps me. It is good for my health.
There are good robust measures. I think the issue which is certainly an issue out there is, you take these measures into different ethnic and cultural groups, you take them into people with different levels of language skills, and we don't know as much about how well they perform sometimes. That is true of many other kinds of instruments, too.
But to not do that, to not measure mental health, essentially means that you have again separated the head from the body. You made the argument that there is no relation to the brain and the other organs that occur down below that. You look at the stuff that is coming out now, that is drawing closer links than you were talking about, Vickie, depression and heart disease, certainly you see the impact occurring, but you also see epidemiologic data now that says people with depression are more likely to develop heart disease.
So there is every reason to think as the science improves, we are going to find more interrelationships. So it seems to me you would have to talk about then how do you deal with health in both domains.
The other issue that comes up is whether or not we are interested in health versus disease.
DR. GREENBERG: Right.
DR. STEINWACHS: So if you do measure things like quality of life, you find almost always that key mental health indicators, for instance, the presence of depression reduces the quality of life.
DR. GREENBERG: Big time.
DR. STEINWACHS: It is like chronic pain. If you tell me you have chronic pain, I can predict that your quality of life will be substantially reduced. Again, if you don't deal with it, it means you don't know one of the things that is causing decrements.
DR. BREEN: I couldn't agree more with everything you said. There is just kind of an empirical problem here.
DR. STEINWACHS: What is that?
DR. BREEN: Well, I tried to analyze two surveys recently, and it didn't really square with what I see around me. I like things to square with what I see around me, at least to some extent. Let me explain.
I used scales in two surveys. I'm not a mental health expert, so we checked with the experts that cooked these scales up ,and there were two different scales. Lo and behold, 97 percent of the American female population 40 to 65 is mentally healthy.
DR. MAYS: Can you tell us what scales there were? Then we can tell you whether you were starting with a problem.
DR. BREEN: One is on the California health interview survey, and the other one is on the national health interview survey. And no, I can't, you would have to look them up, because I'm not into these scales.
DR. MAYS: Let me just make a comment.
DR. BREEN: But they are commonly used scales.
DR. MAYS: There are a couple of things. There is the issue of screening for diagnostic disorder. That is what is in for example, -- that has been in NHANES.
That is where, in terms of our ability to determine with pretty good certainty and with pretty good algorithms whether or not you have certain mental disorders, diagnosable disorders, the state of affairs is pretty good, I would say. It is going to be even better within about a year or two, because there are major studies being funded by NIMH in the field. I think this is why they were saying NIMH is probably not going to support it again. That is actually the CEDI. That instrument allows you to screen for many of the DSM disorders.
When you start talking about mental health, on the other side, with things like well-being and things like --
DR. BREEN: Stress.
DR. MAYS: -- all of that stuff, it is fuzzy. We do have problems. When I went to the national advisory committee for the Agency for Agency for Health Care Quality Research, part of what they were talking about is that was the area, mental health, where pulling together best evidence practices, they just didn't have them yet, they didn't feel like they were there yet.
I don't know what they looked at. There are some that we could with certainty say how certain kinds of anxiety disorders should be treated. We have very good studies for example about that, so I'm not sure exactly why, but they could do it.
So there are some things that are good. Those things that you talk about typically are not in community-based surveys. The CEDI won't be in a community-based survey. For instance, I am going to be a statewide survey, I'm going to use the CEDI short form. The CEDI short form, which the work is based on DSM-III, may have some problems in terms of the algorithms.
DR. BREEN: One was Ron Kessler's. I think that is the one that is on the --
DR. GREENBERG: Actually, it was the subcommittee on mental health statistics that worked with NICHS to get a mental health set of questions on depression in the national health interview survey. I know Ron Kessler was involved, et cetera, and of course Dave Mechanic, who chaired that.
So that is why I am sitting here thinking, when I am hearing whatever they are thinking about doing with NHANES, it may be that NIMH is going to do their own stuff, but they are not going to have all the other NHANES stuff. So the connections between these mental health factors and conditions and all the basic health stuff can't be made in the NIMH surveys.
I feel frankly, if the National Committee isn't going to get into these types of issues, I don't know who is. Maybe the Board of Scientific Counselors will, because that is an NCHS survey, so they do have their own board now. But I think this committee looks at all of the agencies and may not only be feeling like NCHS, maybe you should be rethinking that, it may also be thinking NIMH maybe should be rethinking that, because of the fact that this traditional separation of body and mind in mental health and physical health statistics and information just gets perpetuated by this type of thing.
To me, these are the kind of big-ticket issues that certainly relate to the 21st century vision for health statistics. If you look at what that model was, that conceptual model, and all the influences on health, it was a lot more than blood pressure, obviously.
MR. HITCHCOCK: I spent 20 years with HANES, and I know the planning process. Sometimes they don't really see the forest for the trees, they think about prevalence estimates, they think about prevalence of depression, since it has been measured several times. If they expect that there is no reason that the estimate is going to change over a period of time, they are going to rotate it in and out.
DR. GREENBERG: And I don't want to second guess what they are doing, but it just raises to me -- because I was in this other completely unrelated conference call on Monday, about the fact that actually, we have gone kind of downhill from the point of view of trying to integrate mental health statistics issues more into general statistics, at least from the point of view of the committee having any kind of a role there in the last -- since we abolished that subcommittee. I think it is just something to be aware of.
DR. BREEN: I don't know what the National Committee on Vital and Health Statistics role would be. But the way we usually deal with this at NCI, and I think it is a good way, is, if you know you have a pretty good question, and there is no reason to think it is not, or a set of questions, ways to measure things, then you put them on these large national surveys. If you don't, maybe you keep what you have got, but you do research on the side, on these small surveys, in order to try to figure out what you need, and to try to get yourself to a place where you have got good indicators that you can then put on these large national surveys, rather than using them to check new stuff.
So if the National Committee could be involved in a two or three step process, where they can advocate this kind of work, whether it is preliminary work which is done on pilot samples, and then it eventually feeds into the large national surveys, that is really the most cost effective, efficient and probably scientifically best way to do it.
DR. MAYS: My understanding, and I may be wrong, is part of what they were doing is like the mental health module. If it is not funded by somebody, that is not their kind of -- it gets to what Marjorie is saying. They don't see that as their bread and butter. They see themselves as doing health.
It almost gets back to what Don is saying. Mental health is part of health, but they would never drop blood pressure. There is also this thinking that we need to impact. We have enough scientific data. Before, you thought it was the touchy-feely bit, but now we have enough scientific data that says, if you are really interested in the health of a person, you have to be interested also in their mental health.
Now, we may debate on the measurement issue, but still, I think to just drop it -- I'm actually glad you brought this up, because I haven't thought about all these issues.
DR. BREEN: Well, it raises the larger question of how the National Center for Health Statistics is funded, because it is not funded to do surveys. It is funded to run itself and to collect money to do surveys. The budget is inadequate to do what it is mandated to do.
DR. GREENBERG: Data collection, but it is not adequately funded to do the surveys that it is supposed to do.
DR. STEINWACHS: And this was supposed to be a good strategy. Remember, this was an idea of a good strategy.
DR. MAYS: Because?
DR. STEINWACHS: Because they would go out and seek money from agencies that would make it more relevant, so this was thought of as a good strategy.
DR. BREEN: Was that the underlying thinking of that funding strategy for NCHS?
DR. GREENBERG: Certainly the idea of trying to meet the needs of other agencies through their surveys is -- that is why they have the reimbursable work program. But at the same time, if you are too dependent upon that, you can't have a coherent --
MR. HITCHCOCK: On paper, the collaboration is pretty impressive, if you look and see who sponsors various components.
DR. GREENBERG: Oh, yes. NHANES has had tremendous support.
DR. MAYS: Let's ask what you would like to do. I think, Marjorie, you have really stimulated a discussion that I think is worthwhile that we do something about other than just discuss.
DR. GREENBERG: I was a little embarrassed actually, because I was asked back, do the agencies in the department that deal with mental health or whatever, have they not been responsive to the National Committee, or have they been responsive to the National Committee's requests for participation or whatever. I said, frankly, recently I don't think there has been much of a request.
DR. MAYS: We have Ceil, but I haven't seen her in a long time.
DR. GREENBERG: She is not strictly in mental health. She is in ASPE and the long term care. But she worked at NIMH for a number of years, and she is a psychologist.
MR. HITCHCOCK: -- is still interested in the committee, even though he doesn't show up. He was complaining to somebody about its not being considered.
DR. GREENBERG: Right. When there was a separate subcommittee, he was very active. Once that subcommittee was abolished, we haven't seen him since. But I think if there were a project or an area of investigation or something, we could get him involved again.
DR. MAYS: Here is what I am going to suggest, because again, this is one of these things where we should do something sooner rather than later. NHANES has had its planning process, NHANES is still open to people commenting on this planning process. I think that what we should do is take the initiative to comment about the mental health aspect to NHANES, and we ought to use that also to comment more broadly about the issue of mental health statistics.
DR. GREENBERG: Because I am wondering about this child health survey, too. I have been driving into work every day, listening to this series on NPR on bipolar disease in young children.
DR. STEINWACHS: There is also an epidemic of ADHD, at least the treatment of it. So you begin to worry a lot.
DR. GREENBERG: I wonder the extent to which they are dealing with mental health issues.
DR. MAYS: Here is what I want to suggest, because I think we probably should -- Dale, can you find out, since you know NHANES so well, what is the planning process time? Like, is there something where if we don't get something until February, it is -- I remember that schedule, and I think they were trying to move in like October. So if you could check whether or not getting a letter to them in November is okay versus getting something to them in February is okay.
DR. GREENBERG: March is the next full committee meeting, March 4-5, after the November meeting.
DR. MAYS: I think by then --
DR. GREENBERG: No, but there isn't a full committee meeting in February. There isn't one until March 4-5
DR. MAYS: I'm sorry, March. I keep saying February because we usually meet in February -- to see what the timing is.
DR. GREENBERG: Sure.
DR. MAYS: If it seems that they are receptive for March, then I think that is the better one for us, because I think we will do well, because we are a little busy now. But if it is not and we are going to miss a big opportunity, I think we can try to do November.
Don, can I ask you to work with us, since you have a mental health background?
DR. STEINWACHS: Okay.
DR. MAYS: Then if it turns out, Dale, that we are going to do it, let's ask Ron, let's ask Ceil to suggest someone. Then we also have our partners at the table today. That is why I have been trying to get them involved from NIDA, the substance abuse people also to be participants in this, because mental health is very important to them. Then we can decide a process once we find out the time.
DR. GREENBERG: I really hope you are going to be able to -- I'm going to go to the other meeting, if there is anything else you need me for, but I really hope you'll be able to go on the tenth.
DR. MAYS: Like I say, as long as I don't have a dissertation thing scheduled, then I can do it.
DR. BREEN: One other thing I am wondering. It seems like the funding for this might come from NIH and from the National Institute of Mental Health or SAMHSA or one of those agencies. NIH is just putting the budget together, so if they don't have a couple of million dollars for next year targeted for that activity, it is unlikely it is going to be funded.
But I am wondering if there should be some connection made with people there as well, to see if there is a possibility of funding. Wouldn't that be the other piece? I don't think NHANES necessarily is going to be able to --
DR. MAYS: Let's ask Virginia. I assume that if they were having the meeting now -- I just went to this meeting last week, so I assume that they are in time for budget, because we are talking surveys for 2005-2006, not the one that is currently underway. So they are a little bit ahead.
We also made a suggestion that they ask -- at least in mental health, that they ask NHLBI, because they are interested in mental health and heart disease. But again, the role we may be able to play is to get several of the NIH agencies and Institutes to consider funding some aspects of the mental health survey relative to their diseases. Go, good.
Marjorie, we were going to try and get to the November hearing. Let me just be quick then, because I know that you have to go. Mark is here with us, so I do want to make sure we deal with privacy and confidentiality issues.
A hearing is in San Francisco, so we are going to have to travel, people, from some faraway lands like territories for that particular meeting. But I think on the other hand, there are people who are going to be at AHPA. And because we are doing Asians, Native Hawaiians and other Pacific Islanders, San Francisco is a great place to do that. So there are groups that will be right here in the vicinity.
DR. BREEN: When do you need to know how many people are going to travel, Marjorie?
DR. GREENBERG: Well, actually we have never travelled anyone from -- we might have travelled someone from Hawaii once, but I think when we have the one hearing on the territories and ancillary areas and everything, the Office of Minority Health actually was able to sponsor their travel.
We could probably travel a few people, depending upon what the needs are. But we don't have a lot of capacity to be traveling. So I think the sooner you can identify who your priority people are and we can check on the costs and everything.
DR. MAYS: This hearing is important, because that is part of the complaint that we had, that there are groups we haven't heard from.
DR. GREENBERG: Yes. When the previous subcommittee had the hearing on the territories, ancillary or whatever, we were real concerned, like how were we going to have this meeting and not have any of these people there. We were going to have people in the department who work with those areas and everything, but it just didn't seem like that was good, and we were very grateful to the Office of Minority Health when they were able -- because it just didn't make sense --
DR. MAYS: We got criticized last time, so I just want to warn you now, we need to do this, or else we are going to get criticized.
DR. GREENBERG: I understand that.
MR. HITCHCOCK: We made the recommendation to involve these people, so it is especially important for us to involve them.
DR. GREENBERG: I agree. So again, it would be good if then we didn't have to travel other people, because that would be the priority.
DR. MAYS: I think we should do okay, because there will be --
DR. GREENBERG: Other than the committee. We will travel all of you.
DR. MAYS: We'll walk to the meeting. I'll be okay, but the rest of you who have to walk will be a problem. So we need to engage our planning process.
DR. GREENBERG: Definitely sooner rather than later, because that involves a little bit more, to travel people from out of --
DR. MAYS: I agree. I think it should be clear from the moment we leave here that part of what we need to do is to set up the conference call with our outside partners, who have been very helpful. That is Jim Dawes; he is the policy person for the Asian Pacific Islander Health Forum, and then Margie Pigawa-Singer, who is at UCLA, because she knows lots of the individuals. Since we are trying to deal with the people on the West Coast, she knows those individuals quite well. So we should be looking forward to a phone conversation quite soon.
Thank you, Marjorie, helpful as usual.
Now, we are going to make sure Tom doesn't get away from us to do our letters, but part of what we want to discuss are issues that are important to these letters.
I am very happy that the chair of the Subcommittee on Privacy and Confidentiality, Mark, is able to join us this morning. We have talked about a lot of these issues, but we don't have experts here, so we are very happy actually that you are here.
Russell, why don't you start us off with some introduction to the issue of privacy and confidentiality relative to targeted surveys, part of what we are trying to deal with in the Department? We want to know whether or not something is doable or not doable, or whether this is a big issue we should take up.
MR. LOCALIO: Thank you. I'll try to be brief and to the point.
This issue came up at our meeting in July, a one-day meeting. Several of the people from NCHS were with us via telephone, and we were discussing some of the practical problems of obtaining information on smaller populations, and especially on obtaining information on smaller populations that happened to be defined as they often are by geography. For example, the Native American tribes are often defined by geography. There is a tribe, and they live in certain counties.
The issue arose then in our discussion that if we were to target surveys or recommend targeting surveys to collect health information on these subpopulations, we might encounter this problem. The controlling statute that covers the national health surveys indicates -- has a very restrictive provision about the release of identifiable information outside of the agency without the consent of the person who is participating.
OMB regulations go on to define what identifiable means. That they say means directly or indirectly identifiable. It also mandates a specific confidentiality place that is in compliance with the regulation and statute.
If you conduct a survey in a small area, and you collect information on age and gender and zip code or county, this information may not be identified, there is no name associated with it, but it certainly is easily identifiable. To the best of my knowledge, there are very severe restrictions therefore on the release of this information for the purposes of research, for example, so that one cannot get information on where people come from. But you may need that information on where people come from, because the identified population is defined in part by geography. We are not talking about geocoding to the block group; we are talking about county, we are talking about broad areas from the geocoding perspective.
Now, this might have repercussions on any recommendation that we give in terms of targeted surveys, and especially targeted surveys on subpopulations defined by geography. At the same time, we have this interesting situation going on that I described in an e-mail to Vickie a few weeks ago. The information that is collected by hospitals can be released for limited purposes with much more detail than the information that might be available in these surveys.
So my example to Vickie was, my home county is Franklin County, Massachusetts, Northwestern Massachusetts, relatively sparsely populated, and it has a high French-Canadian, American and Polish-American population. So I could not get access to health survey information on French-Canadian, American or Polish-Americans who live in Franklin County, Massachusetts in very specific detail on age and gender, for example, because conceivably that would be identifiable.
On the other hand, I could go to Franklin County Medical Center, I could go to Bay State Best in Western Massachusetts, and if I executed an agreement, I could get a limited data set in which the identity of various people could be identifiable, although if I tried to identify it, I would be breaking the law, so to speak.
Now, this seems to me to be inconsistent. I know why it is inconsistent, but something that came up this morning adds to the complexity. I would be interested in knowing whether, if NIH conducts a survey such as this planned longitudinal child survey, under what statute is that survey going to be done, and what are the assurances of confidentiality and what is the access to the data, so that if someone had interest in following Native Americans or certain other minorities over time, and those happened to be described by geography, would people be able to actually do that work.
So this has left me in somewhat of a quandary, because I think we have to be realistic about whatever we recommend. It seems that some of our recommendations are very quickly going to run up against this barrier, in that the only people so to speak who would be able to use any information that might be collected and targeted surveys would be those in-house staff, the various agencies in NCHS, for example. Those people who may be coming to us in a subcommittee meeting and saying they don't have the data would not be able to get the data if it were collected.
DR. MAYS: Let me just ask one more question, because it may be helpful. You looked at specific statutes.
MR. LOCALIO: Yes.
DR. MAYS: He is actually an attorney, too.
MR. LOCALIO: I can make references available. I have them here. I think 308-D, it is 242-Md under Title 42, and that is why I think people call it 308-D. I tend to go by the title number. But it is quite restrictive.
Now, the issues that lie behind this, just to give a little bit more background. There is a lot of sensitivity among the agencies, AHRQ, for example, about what types of protection are afforded the data that are collected under the auspices of these agencies. The fear is that unless the I's are dotted and the T's crossed, the information that we really want protected may be deemed to be accessible by some organizations that clearly undermine the ability of these agencies to collect data.
AHRQ for example allows researchers to collect data under the protection of their statutes, and those data are closely protected, but obviously they are available for research. My feeling is that people who are approached by NCHS and were told that their data would be used for research purposes might not have problems with that. But I can tell you right now that if I were approached by somebody and said, we want to collect personal health information and it can be released to the FBI, the Internal Revenue Service, the Department of Defense, I would say, I'm not interested.
So my knowledge of this area is somewhat limited, because I was promised -- maybe if this is being recorded, I can say this extra loud -- I was promised over a year ago a memorandum of law from HHS concerning an entire background on some of these statutes, and I have not gotten it yet.
But I know that people are sensitive about it, and I also know for that matter that NIH comes under a completely different set of statutes. They have certificates of confidentiality that they approve. So we have a lot of inconsistencies here about whether a survey is done through NCHS, where the data are available through AHRQ or whether the data are available through hospitals or they are available from NIMH sponsored surveys.
I am bothered by the inconsistency, because I think the right hand should know what the left hand is doing, and the right hand maybe should do what the left hand is doing most of the time.
But that is my big presentation. I certainly want to confess total ignorance, because I didn't really understand that this was a big issue until the end of July. So I am open to whatever insights people have.
DR. MAYS: Don, do you want to make a comment? Then I'll ask Mark --
DR. STEINWACHS: Why don't you go ahead?
DR. ROTHSTEIN: Sure. I have not spent any time researching this issue, but I can give you some -- share some views I have as I heard it described.
This is not a unique problem. We have been dealing with this issue in the genetics world for some time, because if you do a pedigree study on a large enough family with a unique enough situation, people out there know they have been identified. The question is, how do you publish that and still maintain scientific integrity and also not violate the confidentiality of people with rare disorders.
This is an analogous problem. The problem as I see it is not in the collection of the data, it is in the disclosure and uses of the data downstream. An issue that I don't know what these laws would say about this is whether conditions can be placed on the future uses and disclosures of the material to other people who might have access to it.
Clearly, it seems to me that at least prospectively, with an adequate informed consent document, you can disclose and get consent for a range of pretty specific uses, but if I understand Ross correctly, he is concerned about some third party researcher coming and not being able to get access to data for legitimate research purposes, et cetera.
I am wondering whether the statute would permit disclosure of information to a researcher, with a caveat that the findings not be published in a form that will identify the individuals, and permit the use of the information to do outcomes research or health status research or whatever. Whoever is disclosing the information might have different standards based on what kind of information is being used.
So if you are looking for mental health information or domestic violence information, or something that is very sensitive, far greater restrictions might be placed on that, than if you are going to talk about what is the rate of measles in a community.
So that is my first impressions on this.
DR. MAYS: Let me just make one comment, and then I'll call on Don. The NCHS has I think a very specific statute that is different than the others. It is making a promise to the citizens that in the collection of its data it will not in any way engage in any process that it thinks would reveal personally that individual.
So what it means for us as researchers or people who want to use the data is that we can get the data, but it probably won't have age, they often take out the geographic region. So the very populations that really want us to push ahead and analyze their data. There is little we can do, unless you do either remote access, you do a dummy file, and finally you go there and you can use it either there or through remote access.
So what it means is that few individuals are willing to come here to do that. So while there is some data available, we can't really push the envelope with complex analyses. You can do very broad things. The people who can do the most analyses will be those who are in house. So either they have to do more, or we have to figure out a way to allow other people to do it.
But it is very different than NIH data and data in other places, because of certificates of confidentiality. It depends on whether it is investigator initiated. But anything that is collected by NCHS, it is almost like those things are collected by state agencies. They have a totally different -- their statutes are much more strict.
And on top of that, Russell, the issue is, there is a statute and then there is policies. The policies are not statutes, but it is the operating policies that may exist within the agency.
Don and then Eugene.
DR. STEINWACHS: Three things quickly. One is, when we talk about target, there are two ways to target. One is where you do a separate survey maybe in a small geographic area. The other is where you are doing over sampling on a large survey.
Many times when we talk about the ethnic and racial minorities, even though they may be highly concentrated, they aren't all in that place. So because of that, if you are doing a national survey with over sampling, it seems to me there may be ways to protect confidentiality, since not all of them who will be responding in that survey are necessarily in that geographic area.
MR. LOCALIO: Don, we discussed that, but it seems that frequently the particular health conditions and needs are defined by geography. In other words, although the Native Americans may be spread out, the needs of the Navahos are different from the Northern Cheyenne.
DR. STEINWACHS: Well, even when you are talking about Navahos, they are not all sitting on the reservation.
MR. LOCALIO: But the needs where they are in Sugar Rock are very different from the needs that are elsewhere.
DR. STEINWACHS: I think it is much like a state government. The state government can go to NCHS and say, give us data on the county. So the tribe could go to NCHS, it seems to me, and get information.
MR. LOCALIO: No, not at all.
DR. MAYS: Can you introduce yourself?
DR. PAPPLARDO: I'm Joanne Papplardo. I am sitting in for Joe Paisano.
DR. MAYS: Thank you.
DR. PAPPLARDO: I work with bio event data first hand, and I have done it for years. What I have seen is that a lot of people do not take confidentiality seriously. In the recent years they have, but beforehand, even in our office it was really difficult. There are those of us who worked in NCHS who just were so demanding that they be very strict about who they sent this data out to.
Now, what has happened recently is that NCHS now has taken over -- I refer these people to NCHS who are going to be using the data. But what happens is, NCHS has not given me parameters as to what I can give them. So once they have this blanket confidentiality agreement with NCHS, am I to be given the data with very small numbers in the cells for HIV deaths within a county by age?
This is something that I think is a big problem. Anybody could go in there and see who died of HIV within the county, because we do get county level data.
Now, when we do it, we put it in our trends publication. It is by area, and it is cause of death and whatever. We don't have those small numbers in there. But some of these people who are getting the data from us are getting tables that do have very small numbers in there, and it is disturbing to me.
DR. BREEN: That is actually a breach of confidentiality. That is the opposite of what Russ has been concerned about, which is not being able to get access to the data very easily, because it is too small an area, and it could reveal personal identifying characteristics.
DR. PAPPLARDO: Right, and in IHS itself we don't do it. But because we don't have -- in essence, I don't have -- since there is a blanket agreement between NCHS and the researcher, I just assume that they told NCHS exactly what they are doing.
Now, I think IHS needs to work first hand with NCHS and say exactly what can we give them. If we have a table like this, is this okay? And who is working on a particular issue that they are doing, too.
DR. ROTHSTEIN: Can you tell me what is included in that agreement?
DR. PAPPLARDO: What is included?
DR. ROTHSTEIN: In the agreement between NCHS and the researcher.
DR. PAPPLARDO: They would describe what the research is for, and that they were keeping it in house and whatever. But I don't believe that sometimes these researchers don't sometimes give this information out to people that we are not even aware of.
I think it is very hard to control. We count so heavily, because we work in counties on NCHS data, because we allocate the births and deaths according to geographic boundaries. I am worried that some researcher is going to come up and blow it for us.
DR. MAYS: Let me get back to Don and let him make his other two points.
DR. STEINWACHS: You read the statute, and it spoke to directly and indirectly identifiable. Indirectly identifiable in part becomes a statistical issue. It seemed to me that under HIPAA, this issue of what is statistically identifiable came up, and people were all scared and ran away from that and said, we've got to be more specific and talk about limited data sets.
Again, when you talk about indirectly identifiable, it seems to me you are raising that same sort of issue. It seems to me it would be worth some time having some discussion about, is there anything we can do to promote the science about statistical identification, so at least you can lay it on the table and say, we have to think about how identifiable; is it one in a million chance, is it one in a thousand, is it one in ten.
The third thing was a separate point, which I think you raised. Many of these data sets are accessible if you go to a data center and you sign agreements and so on. The agreements need to be changed, but I know one of my other hats is part of advocating for NCHS budget. We have been advocating for more data centers and for greater access.
It seems to me that one of the things the committee could do is to say we do need greater access for people who have legitimate and protected reasons, and it is just inaccessible now. The only place you can come is Washington, and maybe one other place, or something like that.
MR. LOCALIO: Actually we did discuss that, I think in one of our phone conversations with the subcommittee, conference calls, I should say. The word that I recall was infrastructure, and that was connected with the word resources, looking for resources for infrastructure. By those comments, I read, we would like to do it, but we don't have enough money.
So again, my point is --
DR. STEINWACHS: You talk about where the money comes from; it is what is the argument for getting more money to NCHS.
MR. LOCALIO: My point is that we have to be sensitive to the fact that if we are going to go to people and say, yes, we are going to champion the need for targeted surveys to be able to identify health problems that are particular to subpopulations, --
DR. STEINWACHS: Small subpopulations.
MR. LOCALIO: If those data are collected, the worst thing that is going to be is for somebody to be told, now we have collected -- before we didn't have any information, now we have collected the information, but nobody can have it because it is protected by confidentiality.
DR. MAYS: There was actually something that came up, and Don reminded me, that maybe -- again, when Marjorie said we write letters other than just to the Secretary. On that conversation, for those of you who were at the L.A. hearing, what you remember is that the community groups who came in and talked about how they would benefit from having a census center. What the Census has done is made available to them training as well as data, and they take the data and bring it out to the community and help the community to use it.
We thought, wait, that is what NCHS should be doing. We all know that there are census centers; we have two within the UC system. They are scattered all around. You already have a structure set up; why doesn't NCHS go and join them.
If you remember the conversation, Jethro said that there is a problem. I have now learned much more about this problem, which is, you cannot on the same computer have the census data and have other data, because if the two were merged, the possibility for violation is quite great.
I happen to believe the technology is good enough that you can create impassable firewalls. Maybe when they first talked about it, the firewalls weren't there, but I know technology well enough to know that you literally could do that. But in some places, they say they have to take the data down off the computer and put some other data on the computer.
So I think we should request that Jennifer pursue -- because this is one where it is not about huge money, it is an infrastructure already set up, and it is a way to begin, that the NCHS data could be available in the census data centers, that they could figure out a way to share those. Then we can figure out more remote ones. So maybe we ought to think about that.
MR. HITCHCOCK: There is a new law, Russ, I don't know if you have looked into this or not, I don't know much about it. It is a statistical sharing act, I think is the common way of referring to it. It makes it easier for government statistical agencies to share data.
DR. MAYS: Maybe that will help, but let's just take as an action item that we will send -- do we have to do the full committee to send a letter to Jennifer? Or we'll just ask Jennifer if she will do that then, since she is related to this committee. Eugene?
DR. LENGERICH: Thank you. A couple of points. One is, this did come up a bit in our conversation on the phone. One of the proposals was to include specific reference to the data collecting data centers. We at that time decided not to include that specificity. But under point four here is the place that we are referring to that in general.
DR. MAYS: Point four, meaning?
DR. LENGERICH: In the letter. You don't want to revisit that?
MR. LOCALIO: I don't want to revisit the letter.
DR. LENGERICH: Number four, which is, develop methods and procedures to allow controlled access to data from small geographic locations while assuring expectations of confidentiality of data to enable monitoring of health care in geographically distinct populations.
MR. LOCALIO: That is where it came from.
DR. LENGERICH: Yes, I think this issue fits under that.
DR. MAYS: Is there a problem with that?
MR. LOCALIO: No. I don't want to revisit it.
DR. MAYS: Are you saying specifically that you want another sentence to say something like, such as the use of data centers? Keep that in mind then when we go to this.
DR. LENGERICH: The second issue is related to geography. Geography comes up repeatedly in this conversation as part of the reason that it may violate or restrict confidentiality. That is relevant to new collected data, like in targeted surveys, or existing data.
Just yesterday, we heard about, as Jim Scanlon was doing his update of Department activities, the Department is going to engage in a study of geocoding, and we didn't get very much detail, but geocoding of the Department's data gateway. So it sounds like they are raisin the issue at the Department level of data with geographic identification on it.
MR. LOCALIO: That is actually my project.
DR. LENGERICH: I guess if you get into -- if the project is including studying issues around confidentiality of specific geographic data that is collected through some sort of NCHS or even all the departments, data collection process, it seems like we may want to hear about what that study really is going to entail and how that could affect already collected data or future collected data as well.
MR. LOCALIO: Basically, just to be very quick, it is not really the gateway. It is something called the meta directory defining the data sets. You can find it through the data website, but there are about 200 or so data collections that the Department runs, either in cycles or annually, or they are one-time important studies that we have on this meta directory.
We are going to look at them and see -- it ties in with OMB one-stop initiatives, e-government, that sort of thing, where OMB wants to have a one-stop place for people to get -- it is sort of experimental for us. It is like the Department of Commerce maybe or EPA, that links to specific sites for various purposes.
We don't have that, but yet, almost all of our data sets could do region, could do counties, some of them were published directories of substance abuse clinics. We go down to the street address, that sort of thing. So we are going to be looking at the potential for these 200 or so data sets to have some sort of geospatial data available from them. And certainly confidentiality as well as varying levels of access, data centers, government agencies, we are going to be looking at that during the course of the project.
DR. MAYS: So can you make a request to make sure that -- formally request, that in that project you all undertake a look at this issue of privacy and confidentiality relative to --
MR. LOCALIO: Yes.
DR. MAYS: We've got to get this term straight, geographically distinct. I remember Judy made this comment, that New York is geographically distinct.
DR. LENGERICH: That is why I was promoting the idea of concentrated -- populations that were concentrated in geographically concentrated areas.
DR. ROTHSTEIN: Well, you're thinking of it in the context of discrete minority populations, but it could be any group. What we are talking about is a small cell size. So if you limited it to people who are age 35, women in this zip code, you could get down to one person.
DR. STEINWACHS: It is a statistical issue, what do we think is acceptable.
MR. HITCHCOCK: When you do occupation, for instance, you've got the person.
DR. MAYS: So can we formally ask that? Again, we don't have to go through a full committee letter. Can we say that we are making a request that as you all go through that work, that you really look at these issues?
MR. HITCHCOCK: The scope of work has already been written. The money has already been awarded, there is a certain amount of money that can be spent in certain areas. But yes, to the extent that we can do it, certainly, yes.
(Simultaneous discussion.)
DR. MAYS: Is it done, or do we need to say something in order to make sure that that is in there?
MR. HITCHCOCK: Oh, it is in there, yes. I will bring in the contractor at some point in time to brief us on where we are. We have an advisory committee set up -- not an advisory committee, I shouldn't use those words, a technical assistance group.
DR. MAYS: Assistance, evaluation.
MR. HITCHCOCK: Well, it is a tag of technical advisory group.
DR. MAYS: Okay. So while we still have Mark, are there other privacy and confidentiality issues that you want to put on the table? Yes.
DR. KAMBIE: Census handles these types of issues by putting noise in the data. They feel that there is a geographic area with a very limited population that you could easily identify, you could never tell actually whether that is true or not. They won't divulge what percentage of noise is in there. So that could be a possible solution.
DR. MAYS: Well, there are some statistical issues with that. It depends on the size of the group. It is like when you start recoding people to put them in a different geographic area or some of the imputations that they do, it can create a problem, depending upon the size.
Census can do it, and Census does it for a certain percent, but it is very large. For some of the smaller data sets, we have problems if you do too much of that.
MR. LOCALIO: I would like to add to that comment. There are proposals out there to facilitate the release of information consistent with the controlling statute and regulation, by creating totally imputed data sets.
DR. SCHWARTZ: This is Harvey. I'd like to ask a question. It might sound like a comment, but I'd like to get back to Mark's initial statement regarding appropriate informed consent and disclosures. My question in a sense is, regardless of whatever the statistical issues might be with regard to disclosure limitation and its acceptability, would the only wiggle room, let's say, a grantee or a researcher would have with respect to the particular confidentiality statute that is in let's say NCHS, would that be determined by the disclosures if any and the uses of the data to which suppliers of the data or the subjects of the data agree?
DR. ROTHSTEIN: Yes. Obviously the agreement between the researcher and the individual could go beyond the restrictions that are placed by statute. It couldn't be less, but it could go beyond that.
DR. SCHWARTZ: Yes, right. But bottom line, whatever the disclosure limitation technique would be, whatever would be used, the bottom line is that the subjects of the data need to agree and they need to understand.
DR. ROTHSTEIN: Yes.
DR. SCHWARTZ: Thank you.
MR. LOCALIO: But that would require a change in the way the surveys are done, because they would have to change their assurance of confidentiality that is given. So that is a substantial change in policy, I would say.
DR. SCHWARTZ: Me, too.
MR. LOCALIO: That is one of the barriers. I just wanted to complete my point on the statistical issue. Although there may be statistical techniques to put noise in data or provide data that is total noise, I don't think that the groups that have needs or are voicing needs for data would find that acceptable.
DR. ROTHSTEIN: Well, another possibility might be to see if the statute would permit more detailed data use agreements, including penalties for -- see, I'm not familiar with it, so please bear with me -- including penalties for researchers who go beyond the -- so if you violate this, you are never going to get any more data from us, you are going to be barred from federal grants, stuff like that would get the attention of most researchers.
MR. HITCHCOCK: That is part of this statistical sharing act I was talking about earlier. There are some substantial penalties for people who inappropriately disclose data. I think they apply both to the agency who was initially responsible for the data and for the person who did the inappropriate or illegal disclosure. I don't know if it actually calls for it, but there was talk of licensing agreements that typically agencies would use to license the use of data under this statistical sharing act.
DR. ROTHSTEIN: One of those things might be control of the form in which the data are actually published.
DR. KAMBIE: When you had your hearings, did you have scientists who were members of the ethnic subgroups testify, or are there such people? Because to me, that is a solution to this, is having groups who are actually in the community who are using the data, that can speak the language and can reveal the data to community leaders, and it doesn't need to go outside of that. They can use it in a very constrained environment, and then they can get published in peer reviewed journals without divulging anything.
DR. MAYS: NCHS won't give me any special dispensation. Say for example I want to use the data on Native Americans.
DR. KAMBIC: Yes, but you would need a Native American scientist, not you.
DR. MAYS: Okay, I'll take African-Americans then. Let's just say I want to do African-Americans, and I want to use something from an NCHS data set. I want to use stratification, that includes region, I want to use gender, I want to use age. I really have a compelling scientific rationale for why I want to use all that. I don't get a dispensation from the law.
DR. KAMBIC: Right, but it is in your community, especially if it is one of these African-American communities that is very large -- I'm thinking of Native American or Eskimo or other -- you are talking about geographically identifiable subgroups, and somebody is there in that community.
DR. ROTHSTEIN: I don't think that is the way we ought to go, where you have ethnically matched investigators for certain populations. I think it is appropriate in many instances to get input from the affected communities, and let them place restrictions on, or advise NCHS on the restrictions that are culturally appropriate for a certain community, and build that into what information gets out or what is published, et cetera. Then have all researchers have to abide by that.
Maybe like when you apply for an NIH grant, you have all these disclosures. You might have to indicate, if this is a discrete population, what steps have you made to talk to the representatives of that group about disclosure practices and so on. But I don't think it would work to try to limit --
DR. KAMBIC: But that is one possible solution. But I'm just thinking that when you train graduate students, it gets real scary, when you are thinking, I want to do research, I want to help these people, and I have this huge legal burden over me that if I do something wrong -- and I have seen this happen. It can virtually destroy careers or scare people out of looking into certain areas.
In fact, if I am looking at data, there may be something there that really is surprising to me. I would think, I can't do anything with this, because it might be restricted.
But this is a real conundrum, I agree. I have been thinking about it for years with HIPAA.
DR. CAIN: I was just going to say, the other side of the problem with giving access to someone who is representing a particular ethnic group is that then you would be denying access to data based on peoples' race or ethnicity, which I also think we can't recommend. So either way, I think you run into trouble.
DR. MAYS: Here is what I am going to suggest, because we are coming to a close here relative to the time allocation. That is, I think there are some issues here that it would be worth our while to pursue a little further. I don't know what barriers we are going to come up against, but I think it would be useful for example to get -- there is a confidentiality officer --
MR. HITCHCOCK: Al Zaradi.
DR. MAYS: Al Zaradi. So I think we should have that person talk with us. I think we should have someone like Jennifer there to talk with us.
Do you have a person at NIH? A confidentiality officer?
(Simultaneous discussion.)
DR. MAYS: Don't you know that name? That is the person who gives you the certificate of confidentiality.
DR. CAIN: What I was thinking was, this is a huge problem for a lot of different -- it is not just as someone pointed out small concentrated racial and ethnic groups. There are a lot of people who are working very hard on this. So it might be interesting to either have, not a hearing, but maybe bring in some people, some of the big survey organizations have people that have spent a lot of time, and also hear what they say about imputing data, but consider the range of possibilities that are out there, whether it would be a separate meeting, or just have some people come in and talk to us at some point about it. I think it is a very interesting topic, and a lot of people are working on it.
DR. MAYS: Would you all be interested? I know your plate is full, but would you all be interested in either attending or doing it jointly with us?
DR. ROTHSTEIN: Sure.
(Simultaneous discussion.)
DR. ROTHSTEIN: I just want to add parenthetically, we can't find a hearing date for our own subcommittee when everyone can attend.
DR. MAYS: Okay, we just need some of you maybe, some of you and some of us. We will make one hearing, kind of thing. So let's try to find the time where we can do that. I think it will be helpful to us to have you all as experts to guide us. It is helpful to us to try to solve some of the problems that we see in the recommendations that we are making.
I think for now, we should go ahead with our letter about targeted surveys, but with the recognition that we would be helpful if we can try and also make some comments later on the issue of availability of data. One way to do that is to deal with this recommendation to Jennifer to pursue sharing the census data centers to see whether or not they can move ahead on that. Then I think the second strategy would be this broader discussion that we should have.
Then Dale, if you can find whatever the data sharing policy is, and share that with Russell, --
MR. HITCHCOCK: Sure.
DR. MAYS: -- then I think that would be helpful, to have a more formal review of some of these problems.
MR. HITCHCOCK: In the act we have been talking about?
DR. MAYS: Yes, the act.
DR. STEINWACHS: CDC is very much on the front edge of trying to promote community-based research, that involves the community in that process. It seems to me it would be great to have a discussion with leadership around how that fits with what are the barriers to use NCHS data as part of that process.
MR. HITCHCOCK: REACH, you're talking about?
DR. MAYS: Well, REACH is one way, but it actually at one point almost had a part of a branch, I just don't remember which one, where they were the lead people about the community-based participatory research, and how to get the community to participate.
NIH now has also taken on that activity. They had a group -- Kay Phillips Aaron before was one of the leads. She is at AHRQ now, but I think it was before she went to AHRQ, or maybe it was part of AHRQ. She is the identified person. There is some PHS wide group now.
DR. CAIN: Right, an interagency working group.
DR. MAYS: Yes, exactly. So I think that is an excellent idea, that while we are doing it, to also be responsible in the sense of drawing in those who are trying to insure that the very people we have hearings with will benefit from this. So I think this is good.
It will probably be in like 2006 or something, because we are trying to get the two committees to try to do this together. But we will try and plan that.
MR. LOCALIO: Vickie, just to try to tie this into what we talked about earlier, what is the planning, I would ask, of the national child longitudinal survey at NIH on this particular issue? How are they going to do this? How are they going to get access to small minority populations, subpopulations, and make that information available to anybody?
DR. CAIN: I think that their data sharing policies have not been established
MR. LOCALIO: I think again, if they have not been established, now is the time for us to ask them how are they going to establish them, and what can we learn from the way in which they establish them, and can they be established in a way that is consistent with other surveys, so that we can --
DR. MAYS: Oh, no, no, no, you don't want to say that. NCHS is the most restrictive.
MR. LOCALIO: I know that.
DR. MAYS: No, no, no.
(Simultaneous discussion.)
DR. MAYS: They are the least restrictive.
DR. CAIN: I can tell you the kinds of things that NIH generally does, and I would assume that they would be doing the same kinds of things with regard to the data sharing. But they really have not specified how they are going to do it, because they don't know.
DR. MAYS: Anything else for Mark? Thank you very much. You are free to stay, but at the same time we thank you. Sorry we put a little bit more work on your plate.
DR. ROTHSTEIN: Just pile it on.
DR. MAYS: Okay, folks, I think we are making progress. I think things on peoples' plates -- as I always say, there is no fine china around here, because the number of things we are piling on these plates, it has to be other than fine china. So as we do the report out, I will talk about this at the full committee.
Let's get to our letters. Let's do, since it is in front of you, the health plan one first, so pull your health plan one out. The health plan letter should say, draft, September 23, 2003, dear Secretary Thompson. There shouldn't be any writing on it. It is the clean-looking one.
I'm going to walk through, and at least the comments that I have that need to go in, I will give those, and then there is a place that there are comments that I didn't write it down specifically. There are two places, so I need some help on those.
Paragraph one, line three, where it says racial and ethnic groups. As they pointed out in the meeting, everybody is racial and ethnic groups, so we will do racial and ethnic minorities.
Harvey, do you have the letter?
DR. SCHWARTZ: Yes, I do.
DR. MAYS: Okay. The next sentence where it says, the need for -- and it should be the collection of, and then it goes, adequate and comparable data.
The next paragraph, the first sentence was dropped. It was said that that was redundant, so we dropped it.
The next is where there was a problem, and I don't have it written down. That was about the Food and Drug Administration. I have here something about when the food and drug industry, and I didn't get all of the changes for that. So that one was, come back to.
MS. BURWELL: I just want to say, they said to unjumble it, because it was just --
DR. BREEN: Too much information?
MS. BURWELL: Yes, just a little unwieldy.
DR. STEINWACHS: There was another suggestion about that, when we talk about, for example.
DR. MAYS: I have such as. They said, think about each of these, and the notion was, such as. So it started with something like, when the food and drug industry something, or then they said, use or such as in it.
DR. STEINWACHS: It would unjumble it some I think if you just put a period after health related data.
DR. MAYS: And then get rid of that last --
DR. STEINWACHS: That last little -- it says, can be used to assess progress, achieve goals, because that gets more nebulous again.
DR. MAYS: Here is what it also was, the notion of the FDA thing kind of comes in out of the blue. Let's just take a crack, let's just stop here and take a crack at it. We commend HHS for taking the lead in promoting the collection of racial and ethnic data in the private sector, such as --
DR. SCHWARTZ: How about, when Food and Drug Administration issued guidance for industry on the collection of race and ethnicity data in clinical trials for FDA regulated products, period?
DR. MAYS: Let me do it again. After private sector, it is a comment, such as when, is that what you are saying?
DR. SCHWARTZ: Yes, such as when the Food and Drug Administration issued guidance for industry on the collection of race and ethnicity data in clinical trials for FDA regulated products, period.
DR. STEINWACHS: Very good, Harvey.
DR. BREEN: And then get rid of the last sentence? Or say, this is?
DR. MAYS: This is an important first step.
DR. BREEN: The last phrase, yes.
DR. SCHWARTZ: This is.
DR. BREEN: This is an important first step?
DR. SCHWARTZ: Yes.
MR. LOCALIO: To make it cleaner, you don't need the second FDA. Just say regulated products.
DR. MAYS: Do you want to read the sentence, Audrey?
MS. BURWELL: That is the title of the thing.
DR. MAYS: Let's read the sentence so we have it.
MS. BURWELL: Starting at, the Food and Drug Administration, FDA guidance --
DR. MAYS: No, starting at, we commend.
MS. BURWELL: We commend HHS for taking the lead in promoting the collection of racial and ethnic data in the private sector, comma, such as the issuance --
DR. MAYS: Such as when.
MS. BURWELL: Such as when --
DR. MAYS: The Food and Drug Administration.
MS. BURWELL: The Food and Drug Administration, FDA, issued. I said Food and Drug Administration, then I was reading FDA, and then, issued guidance for industry on the collection of race and ethnicity data in clinical trials for FDA regulated products, period. Then, this is an important step toward obtaining accurate health related data. I have a period here. Are we striking the last phrase?
DR. MAYS: If we made it a new sentence; do you want to strike the last phrase or keep it? That can be used to assess progress in achieving goals. I would say we can strike it.
MR. HITCHCOCK: Let's strike it.
MS. BURWELL: Then the last phrase after data is stricken.
DR. MAYS: Let me go back, because you left out the word first step. So we are leaving out first step?
DR. BREEN: No.
MS. BURWELL: This is an important first step. It is in the text. I didn't cross it out.
DR. MAYS: Okay, great. Thank you very much. Let's move on. I don't have any other changes.
DR. LENGERICH: Before you move out of that paragraph, can we go back to paragraph one just for a very brief moment? That second sentence is actually disparities in access to and delivery of health care. There needs to be two in there after access.
DR. MAYS: Okay, very good. Thank you. I didn't have anything in the bullets.
DR. SCHWARTZ: I have something in the bullets.
DR. HANDRICH: I'm sorry, in paragraph two, the phrase is racial and ethnic data. Then in paragraph three there is reference to racial and ethnicity data.
DR. BREEN: That is the title of the law though, isn't it?
DR. MAYS: I think everybody keeps wanting to change it because they don't realize that it is the title. So let's italicize it, so they realize it is the title of something. Then that might help everyone, because I didn't know, either.
DR. BREEN: Do we still want to make it consistent?
DR. MAYS: There was a request for -- consistency is in the other one, but there was a request for consistency. I was trying to remember about consistency. But there should be consistency in the issue of racial and ethnic minorities or racial and ethnic subpopulations, one of the two.
MR. HITCHCOCK: So the first sentence in paragraph three then should be standardized racial and ethnic data?
DR. HANDRICH: Right, that was the inconsistency.
DR. MAYS: Sorry, Dale, say it again?
MR. HITCHCOCK: Just change race and ethnicity to racial and ethnic. That is the very first line in paragraph three.
DR. MAYS: Oh, first line in paragraph three, okay. The lack of standardized --
MR. HITCHCOCK: Racial and ethnic data.
DR. MAYS: -- racial and ethnic data. I don't want to be picky, but the lack of standardized racial and ethnic data in health care settings is a major challenge to accurately assessing progress in achieving goals. Whose goals?
DR. STEINWACHS: Well, you're talking about health goals. The second paragraph refers to one of the health goals.
DR. MAYS: So we are now talking about the health goals for the Secretary or the nation?
DR. STEINWACHS: The first sentence in the second paragraph, one of the nation's important health goals.
DR. MAYS: No, that is gone. That was seen as repetitive yesterday, so that is gone.
DR. STEINWACHS: Oh, okay.
DR. BREEN: We want to move it.
DR. STEINWACHS: But it is still here.
DR. MAYS: Oh, I'm sorry.
DR. STEINWACHS: The first line of the second paragraph talks about one of the nation's important health goals. Then the first sentence in the third paragraph presumably is referring back to that same health goal.
DR. MAYS: Okay, because yesterday they said it was repetitive, and drop it. So with the other changes, we leave it in.
DR. BREEN: Or you can move it down to become the first sentence in the third paragraph.
DR. CAIN: Or even just say, in achieving the nation's goal of eliminating racial and ethnic health disparities.
DR. BREEN: In our health care system.
DR. MAYS: In achieving the nation's goals, blah, blah, blah, the lack of standardized data. Is that what you are saying?
DR. CAIN: Yes, but the goal that is referred to is the one in the eliminated first sentence. So you could just take part of that and put it at the end of the first sentence in the first paragraph.
DR. BREEN: It is going to be a long introductory sentence, though.
DR. GOODRICH: I like that sentence at the beginning of paragraph two.
DR. MAYS: Okay, then we'll just -- we need something to say what goals we are talking about. I realized the goals were just hanging out there now.
DR. GOODRICH: But it sets up everything that comes after.
DR. MAYS: So we are going to undo the cross-out and keep that then, because we have to do something about the first sentence in this paragraph, so that we are clear on what goals we are talking about achieving. You can also say assessing progress and achieving --
DR. STEINWACHS: If you wanted to turn these around, the beginning of the third paragraph, if you took the second sentence without these data, without racial and ethnic data, health disparities, or progress on the nation's goal to eliminate health disparities cannot be assessed, or something like that.
DR. MAYS: Let's read this specifically, so I can make sure Audrey has it exactly as we need to change it.
DR. STEINWACHS: You take the first sentence, third paragraph. So without standardized racial and ethnic data, the collection of --
DR. BREEN: Collected in health care settings.
(Simultaneous discussion.)
DR. BREEN: Maybe the subcommittee should take this word crafting and then bring it back to the whole, what do you think?
DR. STEINWACHS: Well, we have to bring it back to the whole this afternoon.
DR. BREEN: Yes, I know.
DR. MAYS: Here is what I am going to suggest. Can you write your sentence? Then I am going to go to the bullets.
DR. STEINWACHS: Okay, and we'll see how well I do.
DR. MAYS: So you all do that, and then I'm going to go to the bullets, because Harvey has something for us in the bullets. Which bullets?
DR. SCHWARTZ: Let's start with the second set. As the letter currently stands, there is a line between the two sets of bullets which says, to do so would build health plan capacity, too. Then you go down to the third bullet, I don't think you need the first three words, increase capacity, too. You can capitalize study and start there.
DR. MAYS: The change that I had is that, to do so would increase the health plan's capacity to.
DR. SCHWARTZ: I like that better, personally.
DR. MAYS: The change we got in the meeting was, increase the health plan's capacity to.
DR. SCHWARTZ: But then still, we wouldn't need to have those first three words.
DR. MAYS: So we'll make that one start with study racial and ethnic differences. Then is, thank you for the opportunity to comment and make recommendations, period.
MS. BURWELL: I thought Jim mentioned to strike --
MR. HITCHCOCK: Jim had something on that. I didn't agree with him, but --
MS. BURWELL: That is what he said.
DR. MAYS: He said what?
MS. BURWELL: To just say, thank you for the opportunity to make recommendations on this important issue. But if you want to put it back in, --
DR. MAYS: I got that he said, take out on this important issue.
MR. HITCHCOCK: I don't remember.
MS. BURWELL: I remember, basically on the commenting part.
DR. GOODRICH: I presume the committee has an open invitation to comment to the Secretary on matters of concern to the committee at any point, and that is why a letter like this is being written.
DR. MAYS: Right.
DR. GOODRICH: So to me, it has always sounded kind of funny to say thank you for the opportunity to comment. That exists. An alternative would be to say, thank you for your consideration.
DR. MAYS: I like that. It is almost like we are saying, thank you for giving a power to what we are sitting here to do already. I like that.
DR. GOODRICH: Right. You asked this committee to look at these issues. We are.
DR. MAYS: So can you give us the wording? Thank you --
DR. GOODRICH: Thank you for your consideration of --
DR. BREEN: Of these recommendations.
DR. GOODRICH: Of these recommendations.
DR. MAYS: Okay, I like that.
DR. GOODRICH: Or if it is a combination of comments and recommendations, that's fine, too.
DR. MAYS: Let's just say thank you for your consideration of these recommendations, and call it a day.
DR. SCHWARTZ: I have one other item.
MS. BURWELL: I need to clarify something first. Do you still want to have dropped, on this important issue? The last sentence, the sentence we were just working on.
DR. MAYS: Yes, that was definitely dropped, yes.
MS. BURWELL: Okay, Harvey.
DR. SCHWARTZ: One thing that I'm not clear about, maybe I am the only one, we look at the last set of bullets, and we look at the first bullet of that, provide data, and then we look at the third one, study racial and ethnic differences. Now, we use the term disparities in the first bullet, provide data for identifying and correcting disparities in health care delivery, --
DR. MAYS: And then we use differences.
DR. SCHWARTZ: Right, and then we use differences.
DR. MAYS: I'm with you.
DR. SCHWARTZ: Excuse me?
DR. MAYS: I know where you're going.
DR. SCHWARTZ: So I am wondering about consistency and possible redundancy. I am wondering whether or not we might be communicating on firmer ground if we focus on the word differences.
DR. MAYS: And that is disparities? Your agency is getting ready to let out a report card. We are trying to ride on your coat tails.
DR. SCHWARTZ: Well, this is what I would say. I would say that that report has not been released yet. As you said, I think it was the other day, yesterday I was listening on the web before we had our power surge that you had anticipated that the report would be released by the end of September. In fact, I had informed you that that is what we expected. But then you indicated maybe October.
So with all that in mind, I'm just suggesting it might be better to use the word differences.
DR. MAYS: Okay.
DR. STEINWACHS: Your sub-working group is ready to report out?
DR. MAYS: Let me just make a change here then. I'm going to try to correct both of these, because I think you have a good point, Harvey. Suppose we said, provide data necessary to identify and correct differences in health care delivery to racial and ethnic minority groups.
DR. BREEN: I think I strongly disagree. I think you correct disparities and you study differences.
DR. SCHWARTZ: I agree with that. I definitely agree with that. But I think there are two separate thoughts, one in the first bullet and another in the third.
In my view, it would be -- the third bullet is perhaps better or more logically sequenced prior to the first. It might be more reasonable to suggest studying differences in access to care and status and delivery prior to suggesting that data is provided for identifying and correcting disparities. Maybe I am reading too much between the lines.
DR. MAYS: Let's see. The suggestion is that the third bullet under to do so, that we start with study first, and the third bullet then is provide data necessary to identify and correct disparities in health care delivery.
DR. SCHWARTZ: But I might rather say could provide.
DR. MAYS: Provide data necessary to identify and correct?
DR. SCHWARTZ: I guess. You could read it the way it is, the wording the way it is, I guess, but it would seem that the sequence would be enhanced if you have study before identify.
DR. MAYS: What do people think?
DR. BREEN: Isn't the first one -- I'm trying to get a sense of it, not just stick with the words here. It seems to suggest that we want data where there isn't data. That would be the first step, if that is the thought behind that first one. Then studying would come only after you have got the data, which was the way I was thinking about it.
DR. SCHWARTZ: Yes, that would be the step logically if you were studying the differences in access to health care, health status and health care delivery. You would see the data first. But in the first bullet, what it says is, for identifying and correcting disparities. I think before you can identify and correct disparities, you need to begin to study differences. That is logical to me, maybe not to others.
DR. BREEN: You know what? Maybe this first data bullet has got too much stuff in it, and you would like to see correcting separately. The problem is that this committee doesn't really correct anything. All it does is provide monitoring systems that point out where corrections need to be made.
DR. MAYS: Remember, these are not recommendations, but it is saying, if you do these things above, what is going to happen is that the health plans will have the capacity to provide data necessary to identify and correct disparities, or to study racial and ethnic differences in access to health care, health status and health care delivery.
DR. BREEN: I'm okay with the way it is.
DR. MAYS: Anybody else? We are going to leave it then, but I agree with taking out those first three. Peggy.
DR. GOODRICH: Before we get to your brilliant sentence, I want to just go back and revisit this bullet about conform.
DR. MAYS: Which one? Oh, the second one.
DR. GOODRICH: The second one. You raised this yesterday, and I am so sorry that I don't know what the standards are that are a part of the health information infrastructure and so forth. But the verb conform has a regulatory element to it. Is it a problem for a letter to state as our opinion that if health plans do certain things, they conform with standards.
A, if the standards are optional, I don't know that conform is the best verb. B, if there is an element of those standards that actually is something plans must be mindful of being in conformance with, are we in a position to say they conform with them?
DR. MAYS: Here is what I would suggest. I think that is a very important point. Let's ask now, is there alternative wording, and then in the meeting when NHII experts are there, what I would like to do is to ask them whether they had a very specific thought about, that they really do want to say conform, because that is the direction that things need to be going in.
DR. KAMBIC: It doesn't say conform, it says build capacity to conform. The issue of standards is absolutely fundamental to the use of data in any health system. There is no intent to force to standards. On the other hand, there is a very strong intent to encourage as much as possible. If people are outside of the standards, then the data isn't going to be useful. It is going to be very difficult to merge.
DR. MAYS: So what we are talking here about is the capacity, to be able to --
DR. KAMBIC: I'm sorry, increase the health plan capacity.
MS. BURWELL: It links more to the consolidated health informatics initiatives, where there are agreed-upon standards that many of the health plans are participating in, all with the eye towards gathering the standard data and relating it in standard ways and sharing it in standard ways.
DR. BREEN: If conform puts people's teeth on edge, use would work.
MR. HITCHCOCK: Implement.
DR. BREEN: Or implement.
MR. HITCHCOCK: Something like that.
DR. BREEN: Meet. That is good, meet. I like that one a lot.
DR. GOODRICH: I was really wondering what the intent behind it was.
DR. BREEN: How about meet? Does that work for you?
DR. GOODRICH: It works for me.
DR. MAYS: Your sentence, gentlemen?
DR. STEINWACHS: The gentleman's sentence is -- let's try this. We are striking the first two sentences of the third paragraph on the first page, and we are starting out with the sentence that says, without the collection of standardized racial and ethnic data in health plans, comma, progress toward achieving the national goal of eliminating racial and ethnic disparities cannot be monitored.
DR. MAYS: I like that.
DR. STEINWACHS: And then it goes on, medical service, provider administration are a critical source.
We found a couple of other things, because we were editing your paragraph two free of charge.
DR. MAYS: Wait, can I ask whether or not I can add something, and it is a friendly amendment?
DR. STEINWACHS: Oh, my goodness gracious. He and I worked on this for days. How could you do this to us?
DR. MAYS: Can we say public and private?
DR. STEINWACHS: What are public plans? I've been wondering. I didn't raise it yesterday
DR. MAYS: Actually, it is Medicaid.
MS. BURWELL: Medicaid isn't considered a plan.
DR. STEINWACHS: No, because Medicaid contracts with plans. I was having a hard time thinking about a public plan.
DR. GOODRICH: There are plans that do nothing but Medicaid business. Perhaps that is what was meant.
DR. STEINWACHS: Well, but I don't think they are publicly owned, are they?
DR. MAYS: What I'm trying to do is to make sure that we are not talking just private, but that any health plans under the federal government -- is CHAMPAS?
DR. STEINWACHS: It is not TriCare. But TriCare doesn't==
DR. MAYS: As long as it is clear that the ones that belong to the federal government are included.
DR. BREEN: They are only paid for by the federal government.
DR. MAYS: But they are considered private.
DR. STEINWACHS: Yes.
(Simultaneous discussion.)
DR. STEINWACHS: In the middle of the paragraph, there is a sentence, thus health plans use a variety of strategies to collect data on race and ethnicity, there is a colon there which I think could be dropped, and just go to the e.g.
DR. MAYS: Thank you.
DR. STEINWACHS: Then Gene and I were playing around with the last sentence. I don't know how important the last sentence is, but I think you had made mention in the general committee meeting of the desirability of trying to link in what is going on in the quality work group.
We had a suggestion, that instead of starting out with further, start out with the last part of the sentence that says, through testimony gathered from public and private health plans, large employers, so on and so on, comma, the NCVHS quality work group has also identified significant data gaps, period. I think it reads a little bit better.
DR. MAYS: It also I think makes the point of why it is there, because it is like the testimony. I like that.
DR. STEINWACHS: But that is where you bring up public and private sector health plan.
MS. BURWELL: We're going to get rid of -- all public is gone.
DR. MAYS: All public is gone. All right, folks, I think -- Audrey, can you do that letter? Let's turn to Dale's letter. Thank you very much, folks. No, no, no, there is one piece that is missing, sorry. Go to the bullet that says -- the first set of bullets, facilitate the collection of racial and ethnic data, we are supposed to have the OMB standards in here.
I remember John was saying, it is to facilitate the collection of racial and ethnic data consistent with the OMB standard categories, as well as primary language and appropriate administrative transactions mandated under HIPAA. Or appropriate HIPAA mandated transactions. I didn't get it exactly, but there were a couple of things that were there. I have appropriate HIPAA mandated transactions.
MR. LOCALIO: Are you talking about the last bullet in the first sentence?
DR. MAYS: No. It is the first set of bullets, last one. In there was this clause about the OMB standards.
DR. STEINWACHS: Right, so you want it after the racial and ethnic data?
DR. MAYS: Yes, and before --
DR. STEINWACHS: Using OMB standard categories, I guess.
DR. MAYS: Facilitate the collection of racial and ethnic data using --
DR. STEINWACHS: And primary language.
DR. MAYS: Mine are a little jumbled and that is why I am asking, but I do remember that that is there. Facilitate the collection of racial and ethnic data using the OMB standard categories --
DR. STEINWACHS: And primary language.
DR. MAYS: Should we say, and also primary language and appropriate --
DR. BREEN: I would say, and the collection of. I would say it again.
DR. MAYS: And the collection of primary language and appropriate -- I had appropriate HIPAA mandated transactions, but that may be wrong. Appropriate administrative transactions mandated under HIPAA.
DR. CAIN: No, they want to get rid of administrative. I have appropriate transactions mandated under HIPAA.
MS. BURWELL: That is what Katherine Coltin stressed needed to be there.
DR. CAIN: Yes, administrative is kind of understood.
DR. MAYS: I'm sorry.
MS. BURWELL: I say, Kathy Coltin stressed that administrative transactions be there. They got rid of the word administration. In the bullet before, there was some language about administration of da, da, da, da, and they really took issue with that.
DR. MAYS: Okay, let's see if we get it to work.
MS. BURWELL: What it was, facilitate the collection of racial and ethnic data and primary language in the administration of selected transactions mandated under HIPAA. They took issue with the word administration and a couple of other things.
DR. CAIN: Then I had appropriate administrative transactions, and then I have administrative crossed out. So I think they got rid of administration and administrative as redundant, or apparent.
DR. MAYS: Here is what I am going to say, because Kathy Coltin was pushing for it. We are going to leave administrative in and see if they take it out.
DR. STEINWACHS: Give them something to do.
DR. MAYS: Thank you, I think we have that one done. Now, turn to the marked-up copy. Unfortunately, this is my marked up copy, so I am hoping that Dale has most of the language here, because it is going to be hard, because this is marked up from the first markup.
DR. STEINWACHS: Should we read the screen?
MR. HITCHCOCK: Yes, I've been trying to put down all the comments that we got yesterday.
DR. MAYS: Okay, perfect.
MR. HITCHCOCK: This should match the marked-up copy that you have.
DR. MAYS: I tell you what, why don't we do it the way we do it in the committee. You want me to read it, and then you stop me at the end of the paragraph? Then we'll go from there.
On the screen, that is between the screen and what I have. We are writing in followup to our letter of March -- should it be 27th or 27? Do we need a T-H?
MR. HITCHCOCK: No.
DR. MAYS: Okay. March 27, 2003, comma, concerning investigations by the National Committee on Vital and Health Statistics Subcommittee on Populations to determine the adequacy of federal health data to document and monitor -- this is a very long sentence.
DR. BREEN: It sure is.
DR. MAYS: I'm stumbling. As they say, the best way to edit is to read it out loud, so I am stumbling here. How about, concerning investigations by the National Committee on Vital and Health Statistics Subcommittee on Populations on the adequacy of federal health data to document and monitor the health of racial and ethnic minorities in the United States and its territories.
MR. HITCHCOCK: On the adequacy, and what did you say?
DR. STEINWACHS: Replace ethnic groups with ethnic minorities.
DR. MAYS: Yes.
MR. HITCHCOCK: Three things, one thing, several instances within the sentence. It starts out as, we are writing -- John is going to sign this, as he is signing for all of us. The second is, I have not seen us be specific to the subcommittee in this kind of sense. Also, he is the one signing the letter, not the subcommittee per se.
DR. MAYS: We have letters where -- I have seen letters where there has even been joint signatures with John.
MR. HITCHCOCK: The subcommittee chair?
DR. MAYS: Yes. So there is a range sometimes, like in NHII, because I get that correspondence. They sometimes even have joint signatures. The subcommittee part is okay.
DR. BREEN: Do you want to talk about is?
DR. MAYS: No, I don't feel like I need to. When there has been co-signatures, it is because they are either about to go do a presentation. Like, there was something that came from 21st Century; Dan co-signed it, because Dan then had to go do the presentation before the Data Council.
DR. BREEN: What Jean's point made me think is, if you are not going to co-sign it, then we could take out Subcommittee on Populations and it would shorten that sentence.
DR. MAYS: I think it is good for the Secretary to know that there is a Subcommittee on Populations. I agree with Jean, we ought to get rid of this we, because it is going to be signed by John. How about, the National Committee on Vital and Health Statistics Subcommittee on Populations --
DR. BREEN: You could make it two sentences if you wanted to do that. The first one would just be to say that the national subcommittee is following up on the letter, and the date, and then say we had these investigations.
DR. CAIN: That really does change where you are coming from in defining who is writing this letter. The way it is stated, it states concerning investigations by this subcommittee, versus the way you are rephrasing it, as if the subcommittee is the one charging out with the statement. You want to say something as generic as, this is to follow up our letter, because March 27 letter did come from John.
DR. STEINWACHS: So I am writing a followup on my letter?
DR. BREEN: Or, this is to follow up on the. I think that is what you were suggesting, make it distant, because it is the committee. So this is to follow up on the letter.
PARTICIPANT: What is the letter doing here? It is just a recommendation. Why don't we say, this recommendation is to follow up, or something like that, to say what this is.
MR. HITCHCOCK: You are referring to the correspondence. This correspondence is to follow up on the letter.
DR. BREEN: Probably best to start out with the pronoun with no antecedent.
DR. MAYS: is it necessary to even acknowledge that we are following up on the letter? Because it is getting awkward here. He gets lots of letters from us.
PARTICIPANT: Our earlier letter or something like that.
DR. MAYS: Almost all our letters start, the National Committee on Vital and Health Statistics, and usually it commends him for something.
DR. STEINWACHS: Can we put in the second paragraph, Dear Secretary, if you have read this far, you have won a prize from the committee?
DR. MAYS: Dear Secretary, if you remember that we sent you a letter before, we think you get a prize. But anyway, how about if we just start off, the National Committee on Vital and Health Statistics continues to be concerned, or continues through its subcommittee to explore the adequacy? Can we do that? The National Committee on Vital and Health Statistics through its Subcommittee on Populations continues to investigate -- I hate investigate, because I always think that is really heavy when you are investigating something. How about, continues to assess the adequacy? How is that? The National Committee on Vital and Health Statistics through the Subcommittee on Populations continues to assess the adequacy of federal health data to document and monitor the health of racial and ethnic minorities of the United States and its territories.
DR. BREEN: Can we get rid of the first health and just say the health of racial and ethnic minorities, instead of federal health data and the health?
DR. MAYS: Sure. So let's finish this. Such data are necessary to monitor progress in the Department's strategic plan to eliminate health disparities.
MR. HITCHCOCK: Then I would leave out the first --
DR. MAYS: Wait, before we go, they had said to get rid of strategic plan, I thought.
MR. LOCALIO: That's okay, but if you are going to have monitor progress, then you don't need data to document and monitor.
DR. MAYS: It was, such data are necessary to monitor the Department's progress to eliminate, is I think where we go.
PARTICIPANT: Monitor the Department's progress to eliminate health disparities, without reference to the --
DR. MAYS: Strategic plan. For some reason, I think guess strategic plan is out. I can never keep up with the politics.
DR. STEINWACHS: No, it sounded to me from the discussions that strategic plan was in.
DR. MAYS: In Healthy People 2010.
DR. STEINWACHS: Yes.
DR. MAYS: I have it crossed out. Virginia, did you have it crossed out?
DR. CAIN: No, I have it still in. From what I remember of the discussion, I think it is still in.
DR. MAYS: Okay, sorry, Dale.
DR. SCHWARTZ: In the other letter though on the health plan, we did reference Healthy People 2010 goals, just as a point of information.
DR. STEINWACHS: Yes.
DR. BREEN: It might be more enduring not to mention any particular plan. It might make the letter more enduring.
DR. MAYS: So are you all saying that in the other letter you want out the Healthy People 2010 and put strategic plan in?
DR. BREEN: Or just say, the Department's progress --
DR. MAYS: Wait. What are you saying, Harvey?
DR. SCHWARTZ: Perhaps another way of doing it would be, since it comes up in the other letter, in the second bullet of the letter, it might be reasonable to just say, raise public awareness that data collection is needed to comply with Title 6 non-discrimination requirement, period.
DR. MAYS: To achieve Healthy People 2010 goals.
DR. STEINWACHS: Yes, I like achieving the goals better than comply.
DR. SCHWARTZ: Okay.
DR. MAYS: Okay, we're going to leave it in there. If they want to change it to strategic plan, we can. Harvey, do you have this letter, too?
DR. SCHWARTZ: I don't have it. We did get a blank from a fax machine. I gave Gracie an alternate fax number to try, and an e-mail. I haven't received it yet.
DR. MAYS: She just left.
DR. SCHWARTZ: But I have the older version, and I am looking at that.
DR. MAYS: So you have something here.
DR. SCHWARTZ: Right. I heard part of this yesterday, but we had a couple of power surges.
DR. MAYS: I hope you have some computers that are still working, anyway.
DR. SCHWARTZ: They are up now.
DR. MAYS: Okay. Such data are necessary to monitor the Department strategic plan to eliminate health disparities. We will leave strategic plan in. For some reason I am so uncomfortable, but okay. Should that be a capital S?
The data can also be used to determine the extent to which Departmental initiatives are contributing to the health needs of specific racial and ethnic minorities. Do we need specific?
DR. SCHWARTZ: Racial ethnic minority populations?
DR. BREEN: We had vulnerable populations.
DR. MAYS: That is out.
DR. BREEN: Why, did they say?
DR. MAYS: That is too broad. We are talking very specifically to racial and ethnic.
DR. STEINWACHS: Yes, this is racial and ethnic, not other vulnerable populations like disabled.
DR. MAYS: Vulnerable is homeless, mentally --
DR. BREEN: Oh, I know what it means, but I like it better.
DR. MAYS: But the letter is only racial and ethnic minorities.
MR. HITCHCOCK: What about the geographical aspect of it?
DR. BREEN: So by targeted, all we mean are racial and ethnic groups. That is what it says early in the paragraph, so I guess so.
DR. MAYS: Yes. Next paragraph, the single most compelling and recurrent request that the subcommittee heard in its four recent hearings is for the collection and analysis of health data of subgroups of specific racial and ethnic minorities, especially those who reside in concentrated and geographically distinct areas.
DR. BREEN: Can I bring up something? This is a can of worms, so we can decide to just put the lid back on. But there is a very large population with health disparities throughout Appalachia. Is that going to be included in this as a possibility? It is racial and ethnic and includes white, as you pointed out earlier, Vickie, but I just didn't want us to be precluding the possibility of -- I wanted to make sure that we were conscious, if we were doing that.
DR. MAYS: Here is what I would suggest. We haven't had hearings, and we don't have anything that we are backing that up. We know that that is the case, and I think it is important if we put it on our agenda. But I think in the letter, all the credibility comes from specifically the hearings and things that we have had.
So I think I would say, let's put it on our agenda, as we don't want to leave that group out, and that it is included in the geographically concentrated. But for the letter, it is on the elimination of racial and ethnic disparities. So we are trying to align ourselves with the Department's strategic plan on that, as well as our hearings.
So I would say we leave it out at this point of the letter, but not out of our consideration.
DR. BREEN: Okay.
DR. STEINWACHS: Concentrated is not working here. You need something better.
DR. MAYS: I know, because Burkell said in that meeting that that is New York; New York was concentrated.
DR. STEINWACHS: No, that was distinct. The issue was distinct. We were talking about populations that concentrate in small geographic areas, I guess.
DR. BREEN: It is actually distinct, more than small.
DR. MAYS: Yes, we can't use small. They didn't like small.
DR. STEINWACHS: Okay, concentrated in distinct geographic areas. I guess I don't know what concentrated means. It sounds like orange juice.
DR. BREEN: That is because you are not an economist. Economists always have people concentrated in labor markets or occupations.
DR. STEINWACHS: I don't know why you don't just say, especially those who reside in geographically distinct areas.
DR. MAYS: How about reside in geographically distinct areas in small numbers?
DR. BREEN: No, but the point is that they are disproportionately represented in these distinct geographic areas.
DR. MAYS: Harvey?
DR. SCHWARTZ: I was going to say something that might confuse things. Let me try it. How about if we said, especially those whose residences are concentrated in geographically distinct areas?
MR. LOCALIO: I'll go with the economists.
DR. CAIN: How about, especially small groups who reside in geographically distinct areas?
DR. BREEN: Yes, it is because there are lots of them there. It is not just that they are small groups, and then you could have a very small group. Here we are trying to define people that -- I think concentrate has to be there. We have got specific racial and ethnic minorities, especially those concentrated in geographically distinct areas. To me, it is really clear.
DR. MAYS: Let's try this. In the event they want another term,they have to come up with it. You can change it, but you have to come up with another term and get consensus in the group.
These data are urgently needed to adequately monitor the health status and health care quality of the diverse U.S. population. Do we need diverse?
DR. STEINWACHS: Yes.
DR. MAYS: Members. There were some suggestions here. Members of the groups, I think that is what it was. I think it was members of the groups who provided testimony. Members of the groups that testified, is that correct?
DR. CAIN: Since you list them, you could just say those who testified, or those who provided testimony.
DR. MAYS: Those who provided testimony. Those who provided testimony indicated that the lack of quantitative data not only disadvantaged them in planning and delivering evidence based health care -- do we need, in their communities?
DR. BREEN: Could we say both disadvantaged and -- it would just be shorter, and I think it is easier to work in the positive than the negative.
DR. MAYS: Yes, okay. Indicate that the lack of quantitative data both disadvantaged --
DR. STEINWACHS: I would probably do away with the evidence based and just say planning and delivering health care in their communities.
DR. MAYS: I remember I wrote that.
MR. LOCALIO: Do we need also?
DR. STEINWACHS: We don't need also.
DR. MAYS: Not really. Get rid of it. Do we need disadvantaged again, or another word?
DR. BREEN: It should be put as a past participle.
DR. MAYS: And put them at a serious disadvantage in their attempts to compete for state and federal funding. Something is off here.
DR. BREEN: Disadvantage them in planning and delivering and in their attempt.
MR. LOCALIO: How about, quantitative data both hampered their planning and delivering health care in their communities and put them at a serious disadvantage?
MR. HITCHCOCK: Not only, but also.
DR. MAYS: Read the sentence specifically so he can get it.
MR. LOCALIO: I'd say both hampered their planning and delivering, rather than using disadvantage as a verb. Hampered their planning and delivering, and put them at a serious disadvantage.
DR. BREEN: Now it has to be delivery of.
DR. MAYS: Then is it serious disadvantage in attempts to compete?
DR. BREEN: How about stopping the sentence at funding?
DR. MAYS: Oh, please, yes. It is just too long.
DR. BREEN: Now, speakers. Before, we said those who provided testimony, so it is clear that those are the same, right?
DR. STEINWACHS: Well, you can provide testimony, but not speak. Some testimony is written.
DR. MAYS: Oh, yes. How about, convincing cases were made during the hearings?
DR. BREEN: Yes.
DR. MAYS: Convincing cases were made at the hearing for periodic health surveys that could be used by specific racial and ethnic -- here we go again; are we bringing up orange juice? Do we need concentration back?
DR. STEINWACHS: That could be used by specific racial and ethnic minorities.
DR. MAYS: In geographically concentrated areas.
DR. STEINWACHS: In their communities.
DR. MAYS: Do it again.
DR. STEINWACHS: Used by racial and ethnic minorities.
MR. LOCALIO: Then get rid of the last part.
DR. STEINWACHS: Yes. Does that sound better?
DR. MAYS: Yes, it makes the point. I'm sorry, Harvey, you can't see. Convincing cases were made at the hearings for periodic health surveys that could be used by specific racial/ethnic minorities in their communities.
DR. STEINWACHS: We have been saying racial and ethnic.
DR. MAYS: Yes, all right. Based on what the subcommittee learned from these hearings, the NCVHS recommends that HHS should, is okay?
DR. BREEN: Yes.
DR. STEINWACHS: There is where we were going to put specific racial and ethnic instead of slash.
DR. MAYS: Develop a long term data collection, analysis and dissemination plan to insure that the nation's system for monitoring the health and health care of its diverse racial and ethnic population group -- oh. Develop a long term data collection, analysis --
DR. BREEN: We can use that same language we used before in the last sentence of the last paragraph.
DR. MAYS: Okay, tell me what it says.
DR. BREEN: Specific racial and ethnic minorities in their communities, or else the one concentrated that we use at the beginning of that paragraph.
MR. LOCALIO: I'm lost.
DR. BREEN: Where your cursor is, monitoring the health and health care of its diverse racial and ethnic population groups in geographically distinct groups; I think we need to use the first them that we developed that had concentrated in it. Just pull it off and bring it down.
DR. MAYS: Folks, I'm going to try and get us through this, because we are about ten minutes from the end of this meeting, even though it goes to lunch.
DR. MAYS: I'm going to read it so that Harvey also has it. Develop a long term data collection, analysis and dissemination plan to insure that the nation's system for monitoring the health and health care of its subgroups of specific racial and ethnic minorities, especially those concentrated in geographically distinct areas.
DR. BREEN: Is sufficient in quantity and quality.
DR. MAYS: Is sufficient in quantity and quality, okay. Let's go to the next one. I am going to start reading it, even though Dale is not there. Devise sampling frames for core national health surveys that would increase sample sizes for racial and ethnic populations, so we need to fix the word population, groups that would support adequate analysis and information dissemination.
DR. BREEN: Are we using minorities now, instead of populations?
DR. MAYS: Yes. Develop sampling frames for core national health surveys that would increase sample sizes for racial and ethnic minority groups that would support appropriate analysis and information dissemination.
DR. BREEN: Vickie, you read develop and it says devise. Did you want to change it or leave it as devise? The first word.
DR. MAYS: Devise or develop?
DR. BREEN: I think it is fine as it is, but you read it differently, so I just wanted to make sure.
DR. MAYS: I may have been on the wrong page here. Either one.
Three. Conduct targeted special surveys -- we had this discussion earlier about this issue of special. Is it special or specific? Either one is fine, but we had some discussion, this is going back to the phone call.
MR. LOCALIO: Let's just say targeted surveys.
DR. MAYS: Conduct targeted surveys to collect detailed, timely and accurate data on specific small and geographically isolated populations to better understand.
DR. STEINWACHS: Can we bring down what we had before? Does that work?
DR. BREEN: I think it is still in the copy. We want to better understand.
DR. STEINWACHS: We need a comma.
DR. BREEN: Yes, you want a comma where the cursor is.
DR. STEINWACHS: You use targeted twice, or target and targeted.
MR. LOCALIO: But we don't need that last phrase. That last phrase is the whole purpose of this letter. The bullets here are the specific recommendations to achieve the larger --
DR. BREEN: Yes.
DR. MAYS: Let me read this so Harvey gets it. Conduct targeted surveys to collect detailed, timely and accurate data on specific subgroups of specific racial and ethnic minorities, especially those concentrated in geographically distinct areas. The surveys should use methods similar to the large national surveys, so the resulting data can be compared with national data. Use of defined targeted studies to complement and augment the large national studies would in effect provide an integrated national data system that can provide -- we've got provide twice.
MR. HITCHCOCK: Why don't you just say for a more comprehensive assessment of health care needs?
DR. MAYS: Okay, in effect provide an integrated national data system for a more comprehensive assessment of the health and health care of the overall population.
DR. SCHWARTZ: Or more comprehensive assessment of the health and health care -- or it could be the health status.
DR. MAYS: Okay, let's make that the health status and health care.
MR. LOCALIO: Health care needs, or just health care?
DR. MAYS: Health care.
DR. BREEN: There should be something, though; health care needs or maybe use? Health care use?
DR. MAYS: Maybe it is health care -- Harvey, is it access, delivery?
DR. SCHWARTZ: Delivery of health care because that would bring in access as treatment.
DR. MAYS: Assessment of the health status and delivery of health care.
DR. BREEN: If you put delivery after health care, it will work.
DR. MAYS: Health care delivery of the overall population.
DR. STEINWACHS: Yes, that will work.
DR. MAYS: Number four. The methods and procedures, including data centers, to allow controlled access to data from smaller geographic locations.
DR. BREEN: No, that should be throughout the country or something like that, don't you think?
DR. MAYS: No, I think the issue is that -- see, those you can't get the data.
DR. SCHWARTZ: Is the issue to allow controlled and remote access to data from smaller geographical locations?
DR. MAYS: No, the point is more data centers, because as it stands, there is only one.
DR. SCHWARTZ: Right. Will the Secretary resonate with that term data centers here, without any other explanation?
DR. MAYS: Dale is shaking his head.
MR. HITCHCOCK: No.
DR. MAYS: You can't see it. He is shaking his head.
MR. HITCHCOCK: You can leave out the data centers, because he is not going to understand that. Then it will just say, to allow controlled --
DR. MAYS: How about, to develop methods of procedures for greater access? If he reads this, he is going to say that is taken care of. So, develop methods of procedures for greater access --
DR. STEINWACHS: To expand access.
DR. MAYS: Or to expand access, I like that, to expand access to --
DR. STEINWACHS: Data coming from, or data --
DR. MAYS: Data collected on? To the data collected on.
DR. BREEN: I don't think you need to say anything from smaller geographic locations, just expand access to data while insuring confidentiality.
MR. HITCHCOCK: I agree.
DR. BREEN: The issue is data access, period.
DR. MAYS: Okay, all right.
DR. BREEN: I think it can just be while assuring confidentiality. I think expectations of is kind of distracting.
MR. HITCHCOCK: That was what I put in weeks ago.
DR. MAYS: Let's see where it is now. Develop methods of procedures to expand access to data, while assuring confidentiality of data to enable monitoring the health and health status and health care delivery of -- we need to put the racial and ethnic in there, don't you think?
DR. STEINWACHS: Yes.
DR. MAYS: Because otherwise it is very broad.
DR. STEINWACHS: To enable the monitoring of health care delivery for racial and ethnic minorities.
DR. MAYS: Should be health status and health care delivery. So I am going to read it, Harvey. Develop methods of procedures to expand access to data -- should there be a comma after data? -- while assuring confidentiality to enable monitoring the health status and health care delivery for racial and ethnic minorities.
DR. STEINWACHS: You are saying we need commas around, while insuring confidentiality?
DR. MAYS: Yes. I think to enable monitoring makes them know why it is necessary. I think they think they are monitoring. Healthy People 2010 monitors. We need to do something different, because it is not happening.
DR. BREEN: Well, enable is the strongest one.
DR. MAYS: Before we had Healthy People 2010, but since we don't, then I think that helps. Are we on to five?
DR. STEINWACHS: Five.
DR. MAYS: Collaborate with states, territories, tribal governments, private foundations and other stakeholders to develop methods, procedures and resources -- he will like that one -- to accurately collect health status and health care delivery data.
MR. HITCHCOCK: We might just want to leave it health data.
DR. MAYS: Health data on populations who are within -- help me here now, as to why we are saying this.
MR. HITCHCOCK: This is what Mark --
DR. BREEN: How about saying health data to insure that all jurisdictions are appropriately represented?
DR. STEINWACHS: Yes, good.
DR. SCHWARTZ: Good.
DR. MAYS: Is it appropriately or adequately?
DR. BREEN: Adequately.
DR. STEINWACHS: One question. I don't usually think of private foundations as stakeholders in health. They are stakeholders, but we left out the religious groups.
(Simultaneous discussion.)
DR. MAYS: Here goes, Harvey, for the first part. Collaborate with states, territories, tribal governments, private foundations and other stakeholders to develop methods, procedures and resources to accurately collect health data that insures all jurisdictions are adequately represented.
DR. LENGERICH: I don't understand how a jurisdiction relates to private foundations or other stakeholders.
DR. MAYS: I'll take an example. California Endowment is only to deal with California.
DR. LENGERICH: What about RWJ?
DR. MAYS: RWJ is a national foundation.
DR. LENGERICH: So do they have a jurisdiction?
DR. MAYS: For certain programs, they do.
DR. BREEN: We could get rid of jurisdictions and say all are adequately represented, or use stakeholders again, if jurisdictions is a problem.
DR. MAYS: Remember, we are dealing with geography, so if there is something that gets us back to making sure that we are saying -- it is not a national thing, but you have to make sure that all areas --
DR. BREEN: Maybe areas is the word we want.
DR. LENGERICH: To me, this recommendation is to help states, territories and private governments that have specific jurisdictions for populations be able to do what they are supposed to do. So it may be that Arizona and IHS needs to work together with this group to be able to work with the Navaho in Northeast Arizona. That is what I think needs to happen.
I thought that is what this was about, to help states, territories, tribal governments be able to hone in and understand the health of their population, specific population.
DR. BREEN: Maybe racial and ethnic populations are adequately represented.
DR. MAYS: But it is also making sure that -- this is what we are asking the Secretary to do. The Secretary is actually being asked to exhibit leadership to make sure that all the jurisdictions or all the areas are adequately covered. So IHS and Arizona may take care of their part, but there is nobody who is saying, what about Wyoming over here, what about Alaska. Suppose they don't have somebody.
I guess I thought this one is that the federal government is going to work with all these different stakeholders, and that the federal government would be the one that looked to see that everybody is covered. Otherwise, where is the foundation for the Appalachians? They are not in this, but just as an example.
DR. LENGERICH: There is the Appalachian Regional Commission, which it speaks for.
DR. SCHWARTZ: Do you want to say regional bodies, collaborate with states, territories, tribal governments, regional bodies, private foundations?
DR. LENGERICH: Part of the reason this came up was because we recognized that states, territories, IHS, those sorts of governmental bodies, have sometimes more ability to identify and to monitor the health of those populations within that group. It avoids all of OMB and all of the federal restrictions.
I think what we want to do is, we want the federal government to collaborate with all those to make sure that health is monitored. It may be more easy for them to do it.
DR. MAYS: The whole point is that if there isn't an entity, then there is nobody for them to collaborate with. But if you direct them to look to see if all areas are covered, if there isn't an entity, then the federal government needs to do something to make sure -- let's say the Samoans don't have a group, the Samoans don't have anybody to represent them, and they are not specifically targeted in some kind of way. If they look and they say, in this area nobody represents them, then it is the federal government's responsibility to do it. But if the federal government's responsibility is only to deal with what is already there, something is broken and it needs to be fixed.
DR. LENGERICH: I agree with you, but isn't that covered by one of the other bullets that we have here, because we are asking for targeted special surveys? Isn't that the place for the federal government to do that sort of thing?
DR. MAYS: I thought this was a little bit more than that, but let's see where the group is.
DR. BREEN: How about if we just say, to insure that the diverse U.S. population is adequately represented? You can only go so far. Thompson is leaving soon anyway, isn't he? Are we going to recycle all these letters to his successor?
DR. MAYS: No. We are going to hope that what he is going to do is, he is going to kick all this stuff off.
(Simultaneous discussion.)
DR. BREEN: The diversity of the U.S. population is adequately represented.
DR. MAYS: Okay. As a specific example, the states need financial and technical assistance to complete the development and adoption of an electronic vital registration and statistics system that will include the implementation of revised U.S. standard certificates of birth and death. That is mom and apple pie.
DR. SCHWARTZ: Can I just add that all the states need this? When we say the states, do we need to say the states, but some states have it? I don't really know.
DR. BREEN: We could say states may need.
DR. SCHWARTZ: I'm just thinking of the word the. Do we need the before states?
MR. HITCHCOCK: How about many states?
DR. MAYS: As an example, many states may need.
DR. SCHWARTZ: Right.
(Simultaneous discussion.)
MS. BURWELL: Also, this is an evolutionary process, so at one point, all of them are going to need some important technical assistance. But it is still an evolving process.
DR. MAYS: I see.
MS. BURWELL: There is other stuff to grow.
DR. MAYS: So just take out the.
MS. BURWELL: Right.
DR. MAYS: We don't say may, we just say need. Harvey?
DR. SCHWARTZ: I think taking out the satisfies -- I think it is reasonable.
DR. MAYS: This revised system will insure that higher quality and more timely data are available -- what is the higher quality? Is it more accurate?
DR. LENGERICH: More complete.
DR. MAYS: Or more complete?
DR. STEINWACHS: Higher quality sounds good.
DR. MAYS: Because higher quality just sounds like you could put it on hold and do without.
DR. BREEN: I would say more complete coverage, more accurate data and more timely data.
DR. STEINWACHS: Or necessary and timely data.
MS. BURWELL: Yes, data quality is a tremendous issue with racial and ethnic populations.
DR. BREEN: I would start out by saying, revising this system will insure.
DR. MAYS: Revising this system will insure --
MS. BURWELL: Actually, it is a re-engineered system.
DR. MAYS: Should we say re-engineering this system?
(Simultaneous discussion.)
DR. MAYS: Revising this system will insure more complete --
DR. STEINWACHS: How about high quality and timely data?
DR. MAYS: Will insure higher quality --
DR. LENGERICH: No, just high quality.
DR. MAYS: High quality --
DR. STEINWACHS: And timely data are available.
DR. MAYS: We need to really try and move this along. I want you all to make sure you -- it is 20 after 12. The meeting starts at one, so I want to make sure you have time to get lunch, and Dale has to revise the letter.
DR. STEINWACHS: No lunch for Dale. We agree that revising the system will insure that high quality and timely data are available on -- is it on or for the most basic public events?
DR. MAYS: How about, revising the system can insure, or can lead to?
MR. HITCHCOCK: I like this the way it is.
DR. MAYS: Okay, let's go on so we can have lunch. There are many special considerations for collection of high quality data on racial and ethnic groups.
DR. STEINWACHS: Minorities.
DR. MAYS: Thank you, racial and ethnic minorities. In addition to statistical sampling issues, these include cultural proficiency and everything that is in the parentheses, translation issues and insuring community involvement in the --
DR. BREEN: I would drop issues after translation.
DR. STEINWACHS: What is a translation? You have cultural proficiency, --
DR. BREEN: Translating surveys and things, whatever, into --
DR. STEINWACHS: Appropriate translation, or adequacy of translation.
DR. BREEN: Oh, I see.
DR. STEINWACHS: Availability of translation.
DR. MAYS: Adequacy, because things are translated, but I think there is a problem with -- there is also availability.
DR. STEINWACHS: Adequacy and availability.
DR. MAYS: Adequacy and availability of translation, and insuring community involvement in outreach, dissemination, --
DR. BREEN: The end.
DR. MAYS: Yes, let's make that the end. The community should be involved also in the interpretation, so that is where you have analysis and application of the information. Community involvement in outreach, --
DR. SCHWARTZ: How about outreach and translation of research into practice?
DR. MAYS: Oh, buzz words, I like it. How about that? Community involvement in outreach and translation --
DR. SCHWARTZ: Of research into practice.
DR. MAYS: -- of research into practice.
DR. BREEN: Do you want that other stuff, analysis, and you were saying interpretation?
DR. MAYS: No, based on what he said, that is broader and covers that. I would dump it.
MR. HITCHCOCK: Outreach and what?
MS. BURWELL: And translation into practice.
DR. SCHWARTZ: And translation of research into practice.
DR. MAYS: And translation of research into practice.
DR. BREEN: So that buzz word assumes that the research has been done. You are wanting community involvement in the research process.
DR. SCHWARTZ: It is translating the research into practice. You might even say into policy and practice.
DR. BREEN: Right, but there is a possibility there of SIAM, for example, Harvey, where Native Americans weren't involved in the questionnaire design or development, they weren't involved in the analysis or interpretation, and they thought the survey was really bogus.
DR. SCHWARTZ: And we couldn't get any funds to really put the surveys together the way I think that the community would have preferred. I think getting these issues out might help.
DR. MAYS: That is essential, that methodological research be supported to determine the most effective way to meet these goals over time.
DR. LENGERICH: I would drop the over time.
DR. MAYS: Yes.
MS. BURWELL: I would make it more thorough and say, methodological research is essential.
DR. MAYS: Good, methodological research is essential. Support for methodological research is essential in order to determine.
MS. BURWELL: Yes, right.
DR. MAYS: Next. We recognize that financial resources are limited, but we have found -- how about compelling evidence that shows --
DR. BREEN: Or we can just say, but compelling evidence shows that, instead of we have found.
DR. MAYS: We recognize that financial resources are limited, but compelling evidence shows that specific populations -- let's go back to who they are, that specific racial and ethnic minority population, specific early detection minority subpopulations --
DR. SCHWARTZ: I think it is broader than subpopulations.
DR. MAYS: So leave it at populations?
DR. SCHWARTZ: Yes.
DR. MAYS: Leave it at populations, just take the sub out. Racial and ethnic minority populations experience -- is it poor or poorer health?
DR. BREEN: Worse?
DR. MAYS: Yes, worse. It is either poorer or worse.
DR. STEINWACHS: Poor health or inadequate health care.
DR. MAYS: Then you need to say to who, right?
DR. LENGERICH: I think that is understood.
DR. MAYS: Okay. Consequently we urge the Department to consider requesting additional funds -- oh, they have to go to Congress. Consequently, we use the Department to consider requesting additional funds -- do we tell them from Congress?
DR. BREEN: Could we just urge the Department to request, instead of considering requesting?
DR. MAYS: Consequently we urge the Department to request additional funding.
DR. BREEN: Or how about request funding adequate -- or adequate funding to support the above recommendations?
DR. LENGERICH: I like it.
DR. MAYS: Okay, to request adequate funding to support the above recommendations. These recommendations are consistent with those made in a recent GAO report to Congress. The NCVHS believes that these recommendations will make a significant contribution to the important HHS goal of eliminating -- I don't know if we want to say that, and let me tell you why. If something changes and somebody doesn't have that goal, do you want to still have that in?
DR. BREEN: I think it is the best goal the HHS has ever come up with?
DR. MAYS: But what about if they change the goal?
DR. LENGERICH: They're not going to.
DR. BREEN: Why would they walk away from eliminating health disparities?
(Simultaneous discussion.)
DR. MAYS: Thank you for your consideration of these recommendations.
DR. BREEN: Yes.
DR. STEINWACHS: You run a great meeting. Is it time for lunch?
DR. MAYS: Yes.
DR. HARRIS: Can I make one more comment? I don't want to mess this up. I know we got rid of the word vulnerable in the first paragraph, but I am wondering if before the last sentence where we say thank you, we might want to consider a phrase at the end of the penultimate sentence, such as, as well as disparities and other factors.
DR. MAYS: The NCVHS believes that these recommendations will make a significant contribution to the --
DR. SCHWARTZ: Important HHS goal of eliminating racial and ethnic disparities in health, comma, as well as disparities based on other factors.
DR. MAYS: That is what it says.
DR. SCHWARTZ: Oh, okay, thank you.
DR. MAYS: Put a comma after health. Thank you, Harvey. Bye-bye.
(Whereupon, the meeting was adjourned at 12:30 p.m.)