[This Transcript is Unedited]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
SUBCOMMITTEE ON POPULATIONS
Wednesday, June 16, 2004
Hubert H. Humphrey Building
200 Independence Avenue, SW
CASET Associates, Ltd.
10201 Lee Highway, Suite 160
Fairfax, VA 22030
P R O C E E D I N G S (2:30 pm)
DR. MAYS: Welcome. We’re actually going to start with a role call. Can we start with a role call, so that we know who is here?
[Introductions were made.]
We’re going to get started. We’re going to do a couple of things that I think will help to facilitate this. Gracie is passing out your notebooks. And in your notebooks will be the document that we are going to work on, for those of you who weren’t here earlier. Take the document in which the date is 6/10, and it also starts out as the summary.
Here is what I want to do, is talk a little bit about — because some of you weren’t at the earlier meeting, and I think what we should do is start by talking a little bit about what the overall plan is, the overview of the comments that we received today, and then the direction that we would like to go in.
As you know, we have had this material for some time. And I use Quality as the example to some extent, and I’m not beating up on them, as much as I saw them getting beaten up on, so I’m trying to learn from that experience, which is when you have materials for a while, and people begin to change, and you have different people, the whole notion of well, what was this really about, and what were we doing seems to change a little bit.
So, we started out with a report in which it had an outline. The committee had agreed upon where it wanted to go with this outline, which brought for example in recommendations that we have seen in the past for this subcommittee, recommendations that were even from the territorial report. We brought in history. So, we had a fairly large report that we worked on.
But not only have people changed, but the landscape has changed. And therefore, as we pulled together that material, we had people raising a lot of questions about what seemed to be reasonable to do, and why were we doing other things.
So, we went back to the drawing board a little bit here, and we dumped out some parts of the report that didn’t seem to make sense and things. We still have to work on what’s repetitive and what have you. But what we tried to do with the help of Susan Canard, who has been the writer, is to come up with an outline for the report.
I’m trying to start in a different place, because I know where we started before, and that doesn’t seem to be exactly where we want to go at this time. Why? Because some of the recommendations have been made? Why? Because the landscape is different. And why? Because we want to get this thing done before I retire or something like that from the world of academia.
So, in your packets should be an outline. The outline is for the report. What we did today was talked about recommendations and some background to the recommendations. And we have listed that as a summary. One of the things that was raised by one of the members which I thought was a good issue for us to consider is if we consider the summary as a summary of the report, would we then change anything? Would we be bound to the report in ways in which if we discover something that we wanted to go back to in the hearings, then we would feel like we worked with the committee, and this is what they are expecting us to come forth with.
In many of the e-mails I sent you, I raised the question of do we want to keep calling this a summary? And I want to say that I think we should remove the word “summary,” deal with this as recommendations, and deal with what’s in this as background to the recommendations. So, that now we would deal with the outline for the report as separate.
Marjorie, did you have a question?
MS. GREENBERG: I was trying to think to myself about calling it something like commentary and recommendations, or something like that. I would agree not to tie it to the report by calling it a summary, even though the report will explicate a lot of it. Because also, cognitively people have a problem with approving the summary before they have ever seen the report.
But I think it really is kind of a commentary with recommendations. So, maybe there is a better word, but that’s a term I thought of. We have had some documents, the committee, over the years that we have called commentary.
DR. MAYS: I think that that’s helpful for us to move away from that, and I thought that was a very good point today. But we can come up with something else.
DR. STEINWACHS: In the same vein I guess, I was thinking of the discussion we had before. Why is any different from a recommendation letter to go out, to sort of set a stage for saying that we have gotten this information. We’ve had hearings and so on. This can be put into the same letter format.
MS. GREENBERG: You could just make it a letter, but it’s a little long for a letter.
DR. MAYS: I guess because it’s so long, but if there is like precedence for thinking that it’s not too long for a letter.
MS. GREENBERG: It would need a very short cover letter. It’s a little long for a letter.
DR. STEINWACHS: It didn’t seem that long to me.
DR. MAYS: Any other comments?
Well, let’s start out with thinking of it as commentary and recommendations. And Marjorie, please rise to the forefront and let them know that commentaries have been done before, because I think it’s a little long for a letter. So, if we are comfortable with it being called a commentary.
MS. GREENBERG: And recommendations.
DR. MAYS: Commentary and recommendations, I’m sorry. I think that that will take care of one of the issues, I think a significant issue that was raised today that could be a stumbling block. I think that we have overcome that.
I think what might be helpful is before we launched into any of the changes is for people to kind of respond to what they heard today as kind of broad comment about the document, and things that you concur with, or things that concern you, or any directions that you think we should take differently based on comments today. To me, that’s a primary one that I think will help us to get it through.
But there were some other comments, and I don’t mean the differences in words, but I meant in terms of some of the discussions that were raised. I’ll start one off. For example, we were being encouraged to be a little bit more hard hitting I think. I shouldn’t use the word aggressive, because then I can see Steve sitting there with his comment about the baseball bat.
But that to some extent I think we started out with very strong language and recommendations, and then I think we toned them down. And I think what is being said is that we should put this forth a bit more strongly. So comments about that?
DR. STEINWACHS: Be strong.
DR. MAYS: Be strong, go for it. Okay.
DR. LENGERICH: I think it was very important what you said early on when you introduced this, and follows up on the discussion in that this needs to be tied closely and quickly to the report that is due to be published here. And so, I think that we need to strengthen that connection, particularly in the body. I think to make a little more reference to that, in that we are referencing those recommendations.
DR. MAYS: Other comments? I think we have done it in terms of mapping our recommendations over it. And I think in the beginning when we talk about — we have to be a little careful, because it is not out. We may move faster than their whole report is out. So, I think the executive summary is what’s available. I don’t think the average person can get a copy of the pre-publication. You can’t go online and get it. And you can’t buy it yet.
PARTICIPANT: They had a National Press Club roll out.
DR. MAYS: No, all of that I know. In our subcommittee, Carl went online and cannot get it online. So, I just want to be real clear, we are online and can’t get it.
PARTICIPANT: It is available. I have printed it, and received copies.
DR. MAYS: What I’m saying is that when we were online last week, it is no longer on. We searched for it. We couldn’t find it. It’s not on.
MS. GREENBERG: Related to its availability, I think we were only able to get the executive summary when we tried. But from the point of being less aggressive, but more assertive or whatever — we kind of heard both sides of it — and this links in with what Eugene is suggesting about tying it in more directly, not just by showing how it is consistent with the recommendations that we just heard, but right up front, is some kind of language that the National Committee has been looking at these issues, as have other groups, over a long period of time.
And maybe sort of picking up on this theme that was articulated by at least the presenters, that the time seems to be ripe to bring all these together. There are these different reports that are out there. There is recognition with quality and pay-for-performance, and I don’t know if you want to mention that.
But the quality initiatives, and health disparity reports. It’s just a lot of things kind of coming together. And it’s very timely for the committee to not only look at what it has recommended in the past, and what is now being recommended by other groups, but to kind of try to crystalize or stimulate the community and move this forward.
Something in that line of why it’s timely to be doing this. And that it is very much in the same vein as these other reports. So, in a sense it’s not so much that all these different reports — you can take two views. You can say they are redundant, been there, done that. We have heard this before. What else is new?
But sort of couching this in the language that this is an opportunity we think the committee sees to kind of bring all together, partner with all these other groups that are saying some of the same things, and work with the states and the federal government to take this forward.
DR. MAYS: The tipping point.
MS. GREENBERG: That’s the kind of strong language I think is needed. We don’t strong language from the point of view of mandating things, although that came out. When they read that recommendation I said to John, I said you wouldn’t get that recommendation out of this committee. There are a lot of different constituencies, and that’s fine.
But why are we back here again? Why are we revising this again? Why is it different than before? That kind of language might give it some strength.
MR. HUNGATE: How would you feel about changing commentary and recommendations to call for action?
MS. GREENBERG: I wouldn’t do that right now, particularly when the whole report isn’t out.
MR. HUNGATE: I’m just trying to think of ways to express what you are articulating in ways that people comprehend it.
MS. GREENBERG: I understand what you are saying.
DR. MAYS: I kind of like this notion, because it is interesting, we did have a conversation back and forth about where to put NCVHS, and who it is, and what it’s role is. But instead to kind of talk about NCVHS has looked at these issues, has have other groups. We have currently — and then we can list the reports that also include, all the way back to the “Unequal Treatment” report.
So, we can list two or three other reports that have come out of IOM. We can list the health disparities reports, some of the other things that we only kind of mention in and said other reports. And some comments in the vein that you talked about.
MS. GREENBERG: Get that into that abstract.
DR. MAYS: Yes, I was just going to say I think it should be up front in the abstract. And then I also think it should be reiterated yet again.
Let me take a few more general questions, and then let’s try and do some of the specifics, because I don’t want the time to go away, and then we don’t have some specific language. Other comments that were made and a sense of addressing those as kind of like broader issues of this report?
MS. HANDRICH: The feeling that I have about this is that I would be disappointed if the sense you get walking away from this report is that what we are urging is a collection of activities that will help us collect reliable and verifiable information about health data the way it’s collected now for populations, where before we haven’t been able to do that because of small numbers, and all of the kind of statistical challenges associated with it.
And not get at the issue of what really are the factors that contribute to health issues, health challenges, and what are the factors that make for better health. So, the way I’m coming at this is I am just not sure, and I kind of look to you — I’m just not sure if we talk enough about that the purpose of doing all of this is to learn more about how to really eliminate health disparities, and not just collect better data like we do now for the populations, where it is easy to collect it for them.
I just am not comfortable that the language that we have used so far gets at that point, that it’s not just about a quest for better data, but it’s a quest for better outcomes.
DR. MAYS: Today I think when you raised some questions, and in general when I think also Jeff was raising some questions and some others, the issue that I was struck with was that what is unique about this racial and ethnic group that you really need to do in order to eliminate health disparities?
And now to go back to what you said, it isn’t just that you collect the data. But it’s are you asking the right set of questions? And in the hearing we did pose to people a little bit about what else do you think we should ask about other than race and ethnicity in order to be able to eliminate health disparities? So, that’s how we got, for example, the socioeconomic position. That’s how we got to the notion of the need for contextual data. And that’s how we got to geocoding.
The problem which I think it was talked about by — I think it was Denise who talked about it on the panel, which is it depends on what data set. It’s almost like the hard part is to start giving details, because the data sets vary. So, if we say that for example we need to know something about family composition, well, then the National Survey of Family Growth will stand up and say, but we do that. And then somebody else would stand up and say, that’s not the purpose of this survey.
So, I think we need to talk about it, but I don’t know if we can specify it, because we are trying to talk about a lot of surveys that are very different.
MS. HANDRICH: Right, and I wasn’t even thinking that it would get specific. I just don’t see language in here that talks about that being the purpose, or one of the purposes as standing right out there. It just doesn’t jump out at me. So, maybe it’s just me, that’s what would light buttons of the people that are either going to be collecting the information or providing the information. That’s kind of the question that was asked earlier about what’s in it for me? What’s the return on investment? It’s getting at that.
So, I just encourage us to think about if there is a way to make that sound more a part of our purpose. There is a real value in it.
DR. MAYS: I think in the section where we talk about that this is critical for the department to try and eliminate health disparities, that it may be there that we should put in some language that I think will really bolster this idea.
The other comments about this?
DR. STEINWACHS: Just to step on Peggy’s point. Since the Quality Workgroup is a subcommittee of this committee, it seemed to me at least you could make in the report, the point that was being made earlier that disparities in health is a major quality of care problem facing this country.
Disparities in health is a much more complex thing, because then you are using that to try and look for why those disparities occur. But I think the disparities in health care is at the cutting edge of what we need to do to improve quality of care.
DR. MAYS: Okay, any other broad comments? And then I think what we should try and do is to actually walk through — Gracie, did we pass out the — okay. Then I think we should walk through and look at some of the specifics. Are there any other questions, comments, any other of these kind of higher level issues that were talked about, that we should —
MS. GRANTHON: In terms of benefitting what’s the return on investment, I was sharing with a few people I worked the last few years on the Healthy People initiative. And we had midcourse review steering committee last week. And we had to drop some of our objectives, because we don’t have baseline data.
So, in terms of return on investment, this is going to help the department, and not just the department, but all those states who also do the data collection by those objectives, to just insure that information.
DR. MAYS: I heard the phone. Nancy, are you with us?
DR. BREEN: Hi, this is Nancy. I just came on, and I heard something talking about not having baseline data.
DR. MAYS: Gracie, is there any way you can make her louder? Nancy, can you repeat what you just said? We kind of faded out a little bit.
DR. BREEN: I thanked whoever called with the information — [phone fading in and out] typos. Dale had sent me some information. But there were a couple of typos, so that’s why I wasn’t able to come on in a timely manner. So, I apologize for that.
And I’m glad to be with you. I wondered where you where in the discussion, so that I could, without holding you up, participate.
DR. MAYS: What we are just about to do is to go through the process of taking some of the specific comments that we received today, and starting to edit the document. The document that I’m talking about is the summary, which no longer is called summary. It’s now called a commentary and recommendations.
DR. BREEN: What is it called?
DR. MAYS: Commentary and recommendations.
DR. BREEN: Oh, great.
DR. MAYS: Okay, let’s get started.
MS. GREENBERG: Can I just say one kind of general thing, and just put it on the table. I felt that the discussion this morning was really very good in that we engaged kind of across the committee, which we have a hard time doing. We have tried to get the sort of population focus.
And I felt that that was very positive, that we did engage people. And I think building on that, there was a lot of interest in this whole concept of socioeconomic position. And we might think in terms of putting together a panel or something on this topic, maybe even for the September meeting. Just like presenting your summary today, I think was strengthened by having this presentation by IOM.
Having sort of a more educational or exploratory panel discussion on the whole issue of socioeconomic position, which I think was sort of new to some people, might be a good thing to do. It wouldn’t have to be at the September one, but I’m saying it might be a nice companion to bringing the report forward.
DR. MAYS: I agree. I had kind of forgotten —
DR. BREEN: The speaker before Vickie was really breaking up, and I could hear Vickie perfectly. Is that because of the placement of the microphone?
DR. STEINWACHS: That’s because we’re still teaching Marjorie to use a microphone.
DR. BREEN: I did think it was Marjorie, so that’s good. What I couldn’t tell, Marjorie were you saying you thought it was a good thing to incorporate the National Research Council recommendations or not?
MS. GREENBERG: Oh, definitely.
DR. BREEN: Okay, good.
MS. GREENBERG: I said I thought it was a nice kind of companion, not only that it’s in this report, but then having their presentation at that the same meeting that the commentary and recommendations were presented. So, I was thinking that might — because also, I saw an opportunity here were you piqued people’s interest, and kind of engaged people across the spectrum on particularly the issues of socioeconomic position and related variables.
DR. MAYS: Yes, during lunch people, actually before they actually sat down to lunch, people were asking questions about it. So, as I was starting to say, I think the backgrounds are such that having a discussion of this type would probably be very useful.
So, let’s try, when we have the Executive Subcommittee, to work on that, to put that together. I can think of people, some of whom are local at Johns Hopkins who are very good in this topic.
You should have a two page sheet in which we tried to capture the actual comments and suggestions that were made earlier. I want to thank Miryam and I want to thank Russell. This is like real time in terms of Miryam was great. She took the notes and produced them, so that we could actually have them in front of us. And I think it makes a difference, so thank you very much. And Russell also did the same, so let’s get started.
We have dealt with the issue of the title. The one thing that did emerge still about the title is this issue about disabilities, as to are we talking about disabilities are not. And the reason that disabilities are raised is because in our comment on what we do, this is where I think she is picking it up, is when we talk about NCVHS and our contributions and what we do, we say by virtue of their special needs, economic status, race and ethnicity, disability, age, or area of residence.
So, that is what is keying people in then to want to go back and ask the question of where is disability in this document? So, how would you like to handle this?
DR. BREEN: Aren’t disability rates — I mean they could be potentially higher among different racial and ethnic groups or different socioeconomic groups. Isn’t that how it fits in?
DR. MAYS: No, we don’t address disability at all in the report. So, I think it’s like either it is a red flag in terms of saying the NCVHS does it, and we haven’t done it in the report, or we should probably drop it.
MS. GREENBERG: Well, I wouldn’t drop it as part of your overall mission. You did a whole report on functional status, so it’s not like you haven’t addressed disability. But this report is not about disability, though of course one of the health disparities is differential rates of poor functioning or disability, there is no doubt about it. This isn’t specifically about cancer either, but there are disparities there.
So, I think the real issue was the title, because it says measuring and eliminating health disparities. But you need then some kind of — it’s already long, but you need some kind of colon or something, that we are talking about health disparities related to basically race and ethnicity and socioeconomic position. We are not talking about health disparities related to disability or what have you.
DR. MAYS: I remember there was the suggestion that we add SEP in the title.
MS. GREENBERG: If we look at the report here, it’s also called, “Eliminating Health Disparities: Measurement and Data Needs,” so they just used that broad thing. But then it says Panel on DHHS Collection of Race and Ethnicity Data. So, you know right up front what their main focus was. You need something in this as well.
DR. MADANS: There are two ways you can deal with disabilities, and I think we have heard both of them. One is rates by these other groups, whether it’s SES, race, ethnicity, looking at it as an outcome. I would include that as a health outcome, because we generally use health very broadly.
The other is are you dealing with disability groups as the demographic. And that is really what I think what you just read from was saying, because it’s a vulnerable group. And so, it’s disability across groups that are defined — I’m sorry, disparities across groups that are defined by disability status. And I think that’s where the confusion comes in.
So, if you really want to make this very clear that this report is only about race and ethnicity and possibly SES, then maybe it does need to be in some kind of sub-title or a colon or something.
DR. MAYS: I think in the long run we might be better doing that. And the reason being is because in what we heard, testimony, and what we reviewed, we didn’t actually deal with disability in either way. And so, I would hate the expectations to be that we didn’t.
MS. CANARD: I was just going to propose one specific possibility. I’m not even sure it’s the best, but it would be to actually tag a few words onto the title, rather than coming up with a subtitle. It’s already terribly long. And I think we don’t want to lose — following on Peggy’s point — we don’t want to lose drawing attention to the fact that this is all about eliminating health disparities.
So, that’s the danger of making this one of the 19th century endless titles, but this is an important issue. You could say something like recommendations on the nation’s data for measuring and eliminating health disparities among race, ethnic, and socioeconomic groups. Does that work?
DR. BREEN: I think so.
MS. CANARD: It’s not great literature, but it does take care of being clear.
DR. MAYS: No, that’s a little different, because the report is not among the socioeconomic groups. It’s by race, ethnicity, and socioeconomic position.
MS. CANARD: Does socioeconomic have to be in the title though? Is the main thing racial and ethnic?
DR. MAYS: Again, that’s a recommendation we received. And I think that it is being highlighted. So, I think that it’s good to add it at this point.
MS. CANARD: Well, then maybe what we have to do is use those words to modify the word “data,” rather than to modify groups.
PARTICIPANT: Use it to modify health disparities, eliminating racial, ethnic, and socioeconomic health disparities.
MR. LOCALIO: We’ve got to use socioeconomic position. We’ve got to use that term as it is in the title.
PARTICIPANT: No, I don’t think you do. Why can’t you just use socioeconomic?
MR. LOCALIO: I don’t think so. If we are going to have a panel in September on socioeconomic position, and if that is the term of art that’s being used, we’ve got to use that term of art.
PARTICIPANT: Then you’re going to need a colon.
MS. CAIN: The point that’s being made is that is being used instead of socioeconomic status. And you would not use that word in the title. You just refer to socioeconomic.
DR. MAYS: I think in the title, but throughout the document, because what you are doing in the title is you are not settling on what kind. You are saying it’s socioeconomic. You’re not saying whether it’s status or position. But in document I think what we should use is socioeconomic position.
MS. CANARD: And we have already been told we need to include some definitions of race, ethnicity, and SEP. So, we can clarify it early on.
DR. CARR: I was just going to say in line 100, where you talk about what is NCVHS do. And the next line said the present report summarizes recent work by the subcommittee. And then you could just add on, because above it you say here are all the things the committee does. But this subcommittee is focusing on whatever.
MS. GREENBERG: That’s good. We still have to do something with the title.
DR. CARR: I think that’s where the confusion came from reading this paragraph.
PARTICIPANT: Justine, I’m sorry, I didn’t follow what you were saying.
DR. CARR: Line 100 on page 4, the confusion I think that was discussed this morning came from the description of NCVHS Subcommittee on Population focuses on all the things that it focuses on, and that includes disability, age, area of residence. The final sentence in that paragraph says the present report summarizes recent work by the subcommittee. So, I think the person thought that there would be disability. So, I think you could clarify that by saying by the work of the subcommittee on et cetera.
DR. MAYS: I think what I need to is to help us to figure out how we are going to cover everything by the end of this meeting. And I think we are going to have to figure this out. As we make recommendations in terms of like for specifics of language, I’m going to try us have and not necessarily have to like detail them right now, because otherwise we won’t get any further than maybe the first two or three.
So, people are going to have to trust that we will get it down. And that what’s down either is going to get clarified a bit tomorrow. But I think we will have a little subgroup that is going to work on this tonight. And unfortunately, I’m in California in the morning. That’s not a big deal. I will talk to the subgroup in the morning, where we might have to check in again in the morning I think, after looking at the report, and seeing if there are any other additional things we want to change before we get it off. So, can we try and do that?
DR. HEURTIN-ROBERTS: I just need to clarify, I’m not available tonight. Can we meet after this meeting before six or something?
DR. MAYS: Can we deal with the process of this just a little bit later?
DR. BREEN: Vickie, were those the main concerns of the full committee, that they wanted specificity on the scope of the report? And also they wanted definitions on both items, race/ethnicity and socioeconomic position?
DR. MAYS: Yes, we did have the request to actually define those things. Remember, we just have a very diverse background, so for some people this is kind of a introductions, and for other people it’s like we forget we know it. So, I think that given that this will be a widely circulated document, then yes, we do have to define some of this.
DR. BREEN: I don’t have any problems with those, but I was just thinking if those are all of the items that are needed, I think that a subcommittee could definitely work on that.
DR. MAYS: No, we have a whole list here. I have two pages. So, that’s why I’m getting a little concerned in terms of our ability to be able to get this through now. So, let’s see if we can try to move ahead and see which of these are things that we think are very simple, and we can sit down and do them after the meeting, and which things that are more complex, because doing it by committee, this can be until September to do it by committee.
MR. HITCHCOCK: Vickie, could I add two points I don’t see reflected here that Jim had mentioned this morning? One was the notion that progress has already been made in some of the strategies that we speak of as one of the recommendations. And the second one being that HHS —
MS. GREENBERG: Is that 165 down here?
MR. HITCHCOCK: Is it 165?
DR. MAYS: That’s exactly where it is. We were asked to put in a comment about celebrating what has been done. And then maybe asking them to accelerate the rate of doing it a bit more.
MR. HITCHCOCK: And I think his other comment had to do with making it clear that HHS would not have the leadership in some of these data issues, but they would work with OMB and the other agencies.
DR. MAYS: Okay, here is what I would ask, Dale, if you will take this, and I think what he was saying on that one is that there are places where we should be adding OMB. So, if you can look through this document now and see where you think — I know it was clear in number 1. Rather that just saying with other departments, that we specifically should mention OMB.
MR. HITCHCOCK: We should mention OMB, and that we cannot take the leadership in some of these areas. We have to work with OMB in sort of a collaborative effort.
DR. MAYS: Can you go through that and add in the recommendations where it is that we definitely should be talking about being in collaboration with OMB? Great. So, that takes care of that one.
MS. GRANTHON: I found a typo. On line 157 where it says collaborate with — I typed OMB.
MS. GREENBERG: What?
MS. GRANTHON: For line 157, the second line where it says collaborate with OMH, I meant to write OMB.
DR. MAYS: We were asked in the abstract to be — it says more specific that these are recommendations of the department, to encourage that the department can play a key role in helping to eliminate health disparities in the population. Can you comment on this one, Miryam? I don’t know what this one is.
MS. GRANTHON: Which line?
DR. MAYS: It’s 618 in the abstract.
PARTICIPANT: Picking up the language from later in the report.
DR. MAYS: Do we need any additional discussion of that? Or do you feel, Susan and Miryam, that you have some language to be able to write that?
DR. HEURTIN-ROBERTS: I think she was recommending that we use the language that is in the section on NCVHS.
DR. MAYS: Okay, 20 is something that is taken care of where it says — I’m sorry, Jennifer.
DR. MADANS: I just wanted to follow-up something that you started talking with Dale about in terms of strategy for the department. When you first read these recommendations, they sound like nothing has been done. So, I think people sometimes tend to get defensive. If you can find some example in this celebrates stuff where the department has done something, and highlight that as something you want them to do more of, you might get further than just blank statements of you should do something in this area.
I think that as we start off by saying, these recommendations have been around for a while, and they don’t seem to get acted on. And I think it’s because they are general. And everyone agrees with them, but they kind of get into operational, what exactly do you want the department to do. And if you can give them an example of something where somebody in the department did something that furthered some of this work, it might be a good, kind of concrete thing that would go the next step. We should continue this. We should do more on this or something similar.
DR. BREEN: In the draft report, the very first recommendation applauds the department for including requirements to collect racial, ethnic, and primary language data in the new Medicaid managed care and state children’s health insurance program regulations. Would something like that work here?
DR. MADANS: That would be fine. I think some of the more methodologic things, we could probably try to come up with some examples.
MR. HITCHCOCK: There are some examples we put together. We’ll look at the Data Council’s report that much of this is based on, and at the request of the Department of Justice, they were interested in seeing what we had. Jim and I and Robin and Sue Provosi(?) in the Civil Rights Office put together a memo. I can get that for the committee.
MS. GRANTHON: Something I just pulled up was this — I know it’s a few years old, but I don’t know if they are perhaps good examples in here that maybe we can pick out from here, the 50th anniversary symposium reports.
PARTICIPANT: I can take a stab at that.
DR. MAYS: We need to think about where we are doing it before we just say take a stab at it, because part of what I’m struggling with right here now is the structure of the report, and kind of how to best do that. Are you asking that it be like an example earlier in the report? Or are you asking that we do this when we actually are talking about the overarching recommendations?
DR. MADANS: This is something that happens to be my pet peeve, but when you talk about bridging, the department has done a lot on bridging. You could mention that briefly. If you want the department to do more on bridging, you can say something like building on the work that has already been done, and put a reference, continued along that line, if that is what you want to say.
But I think it just gives it that there is a context, something has been done, and they can go back and look at that. Because they may not know when this gets to the department, exactly what has been going on in some of these specific areas, and how the department has been involved.
DR. MAYS: Okay, but I’m going to pose this again, because maybe I’m not being clear, which is we talk about these issues earlier before we get to the recommendations.
DR. MADANS: Any recommendations?
DR. MAYS: Okay, that’s what I was asking. You want —
DR. MADANS: It’s a suggestion.
DR. MAYS: I understand that, but if we do it for bridging, then we’ve got a lot of other things I’m trying to figure —
DR. MADANS: We may not have done things in other areas, I don’t know.
DR. HEURTIN-ROBERTS: Maybe, Vickie, since we are trying to edit a specific document to take back tomorrow, it would be very helpful if you could actually suggest some specific language in specific places, and give it to one of the writing team by the end of the meeting. That would be very helpful.
MR. HUNGATE: Another suggestion there. I would suggest adding a totally new paragraph.
DR. MAYS: Jennifer, I think that’s better. What I’m uncomfortable with is in the recommendations, because then it’s like, okay we pull that one out, but then we are a little lopsided in terms of the others. But I do think that doing it in a paragraph where we are talking about the timeliness, we give examples of things that have been done, and how that has contributed in some way to making a difference.
I think if we can write a paragraph like that, that would be perfect. And it sounds like Dale just wrote something like that maybe for the Department of Justice, in which you have that. See what it is, it’s not just saying we did the work. But I think the convincing case is what did it contribute to helping us to be able to eliminate health disparities.
So, if we can find an example that is like that, I think it would be great. And if in the bridging you have an example of something that it did, then that would be perfect. So, if you could give us that language, that would be great.
MS. CANARD: I would just encourage you to keep it at a fairly high level of abstraction, maybe one example. And keep it within a paragraph that is more or less akin to the others, so that stylistically it fits.
DR. MAYS: Okay, and then I think that that helps. The citations are not a problem. The title, that’s not a problem. Socioeconomic position, provide more description of footnote definition. Discuss measurement issues still a challenge.
What we need here, and I’m going to ask Virginia, because they just had — not you recently, but your office had a whole conference on socioeconomic position. Can you pull out some things in terms of — when they say a footnote definition, we just have to be a little careful here.
I think it’s better to talk about it as maybe a description of what it is, as opposed to a definition, because we could get into wars in terms of different people in the field have different perspectives on this. So, if we have a description of more what socioeconomic position is, and why that is chosen, I think that would be easier.
So, can I ask you? Thank you.
MR. HUNGATE: A comment again. It seems to me that you have a section called, “A Changing Landscape.” And that is one of the landscape changes, is the use of the term socioeconomic position. Another one is the emerging genomic information that says there is more difference within a single race than there is necessarily between races. And I think collecting some of that one place might help.
DR. MAYS: I agree. I think that’s a good place, because it lays out the issue, and what some of the movement is going to be. And then it helps to put into context, the OMB guidance. Someone really didn’t have a clue about why did you even do this.
The word “adequate,” I can take a crack at that.
MS. CANARD: I think the issue there was not so much the word adequate, it was broadening the point, this point about socioeconomic position.
DR. MAYS: Unless I’m in a different place. Wasn’t this the — this is the issue about the data. That’s why I said I kind of wrote that, so I clearly know how to clean that up.
DR. STEINWACHS: You can refer to which have been used to examine Black/White.
DR. MAYS: Great.
Geographically distinct groups, and I think that that raised an issue about — again, it was like helping people to understand. And even one of the suggestions that — oh, she’s not still here, the woman from the American Nurses Association, I think Carol is her name, suggested what about using geographically dispersed.
I think it might be better if what we do is actually give some examples. Is Edna still here? Edna, can you do that one? It’s in line 61. It was when the discussion came up about the geographically distinct, because this is a point that is really specific quite often to American Indians and other Pacific Islanders.
MS. CANARD: That phrase was Gene’s addition. I wonder, Gene, if you have a clarification, or if you feel that it’s absolutely necessary to have that extra phrase. I guess you do, or you wouldn’t have added it.
DR. MAYS: On 74, that was Justine’s comment.
MS. CANARD: In the original writing. He added that to the original draft.
DR. LENGERICH: Well, I think it came up in testimony that we heard, and as I think Vickie reiterated this morning that there are specific groups that are defined by geography in these larger groups, which need data about them. And Native Americans I think are particularly one of those groups.
DR. MAYS: We are actually on 74, where we are talking about — on 74, about race itself is not well understood, often being mistaken for a biological rather than a social construct.
Suzanne, can I ask you to take a crack at this? This is exactly your area as an anthropologist.
Line 77 is fine.
Okay, 136, let’s get to that. This is Peggy’s point of view here, and I think that we had talked about this. But there was another place in which I said that I thought it —
MS. HANDRICH: You liked it there, 136 to 140. So, the listing for topics would be expanded, line 139-140. That’s what I think you were thinking, Vickie.
DR. MAYS: There was some where, where we talk about what the department needed to do.
MS. HANDRICH: There is another place, and that’s a recommendation.
DR. MAYS: Oh, no, I don’t want to go there. Okay, let’s try in this 136-140 — can I ask you to write a couple of sentences there?
MS. HANDRICH: Yes, I could try, sure.
DR. MAYS: Okay, and then we’ll come back and revisit that.
DR. MAYS: On 157, change word aggressive and describe, develop more resources, collaborate with OMB, and provide additional staffing. Dale is taking a stab at the OMB part. Dale, you will take out aggressive, and come up with department-like word that we can use.
MR. HITCHCOCK: Passive-aggressive.
MS. GRANTHON: Didn’t you also hear that he just didn’t want that word “aggressive,” but he wanted specific things. He said more resources, staffing. He wanted detailed things. That’s what I heard him say.
DR. MAYS: It’s just that I think aggressive is an emotion, and it doesn’t really give direction. So, I think what we want is language that gives direction, and that the direction is very strong direction. I think that’s what Steve was saying, the aggressive is great, but I don’t think it does anything.
And 165, we just talked about that. And this also gets to Jennifer’s point, which is that we don’t want the document going up to the secretary, and the secretary saying, well, what’s the deal? I thought they have been doing this. Has anybody been working on this? And all they get is then a request to document whether they have done anything, as opposed to a recognition that they have been working on these things. But what we are asking is that the rate at which these things are accomplished be accelerated.
Now, because we are putting a paragraph in earlier about how timely this is, I think that that is the place also to say that these things are underway. Again, as we usually start — it’s interesting, we usually start our stuff this way. We usually thank the secretary for the attention that he has paid to some issues.
And I think we need to in the timely, et cetera paragraph also talk about that the department has taken a role in bringing these issues to forefront, as well as directing its agencies and departments to address them. I think it’s something like that.
Jennifer, is that kind of in the ball park? And that what the committee is asking is that because these issues could contribute most importantly to the elimination of health care disparities in racial and ethnic minority groups, that resources and attention be paid in order to accelerate the rate at which these are being done.
DR. MADANS: Expand.
DR. MAYS: Okay. Wait, now I get what you want. I get it.
Okay, let’s go to page two. See, if we can go through all these, and I can come back to the people that are doing pieces, and then I think we will be able to get this done. That’s just a matter in 201 of putting down Recommendation 5-2.
And in line 208, include comments on privacy. That’s a little more difficult on 208. This is when Jeff discussed the notion of — the concerns that some people have about answering some of the questions, that some groups are more concerned about confidentiality and privacy than others.
And that part of what we need to do in addressing what needs to be done is that we pay attention to the concerns they have about privacy and confidentiality. It’s interesting, because in the report we talk about some of the cultural issues, but I’m trying to think of where best to put that, as to whether it needs to be in the actual recommendations or whether or not is it someplace else.
Audrey, can you take a crack at — I think it probably is best not as a specific recommendation, but as an issue to be considered. And that goes to Peggy’s what’s unique, what’s different, what do we need to pay attention to that is any different for this racial and ethnic group? And one of those is often because of the size of the population issues of privacy and confidentiality are of even greater concern, something like that.
Susan, I think if we get the language, then we can play around with where the sentences fit.
MS. CANARD: When were you thinking we were going to get the language? I’m a little confused about what your process is.
DR. MAYS: As soon as I finish going through. All these people are working on it right now.
MS. CANARD: Okay.
DR. MAYS: I plan to get them by the end of the meeting.
Those were the very specific ones. The overall — recommendations should always refer to health and health care. Susan, can I leave that with you in terms of as we go through the document, to make sure?
MS. CANARD: Sure.
DR. MAYS: Details on subpopulations and the wide population. Health care among White immigrant population groups. Justine raised this, and I think that — should we have at some point a statement about the importance, because we have now added socioeconomic position, and have a statement at some point about the importance of this to all populations, regardless of race and ethnicity?
I think a sentence that also says something about socioeconomic position allows us to also understand not just within the context of just race and ethnicity, but for all populations who may differ based on socioeconomic position, disparities in health and health care.
DR. CARR: I think it helps us first do the analysis before we target the intervention. And I think having that granularity in the White populations may give us insights into drivers of the disparities.
MR. HUNGATE: I wonder if it might fit in recommendation 1. That’s the place where socioeconomic position measurement is referred to specifically. Socioeconomic position measurement is referred to in recommendation 1. Every place else it’s a report back which includes that.
DR. MAYS: I think in terms of specific strategy, I think we want it as a broader comment.
MS. BURWELL: The OMB guidelines, and I think Denise Love made a good point on this, is that you can collect for subgroups of White populations in addition to other racial and ethnic groups. That’s not widely known. And I think that is what this comment is getting to. You can collect it. You don’t usually see it done, but I see it in reports all the time, and even in the frequencies, that you have a number of White subpopulations. They are not reported on.
DR. MAYS: But I think, Audrey, that’s why I said something as simple as a statement that has to do not with race and ethnicity, but has to do with socioeconomic position, that indicates that collecting that data also allows us to have more information on not just racial and ethnic minority groups, but on socioeconomic position, which applies to everyone.
MS. BURWELL: It means different things for different population groups though. And there has been no real consensus as to which measures are best for which populations.
DR. MAYS: Are you talking about socioeconomic position?
MS. BURWELL: Well, that too. That’s still fairly new, even though there was never any real consensus on SES.
DR. MAYS: Oh, wait a minute. This report is not trying to tackle the best way to measure anything, because we are so clear, that we can’t answer that. I mean I want to be real clear that while we talk about it as a concept, we actually say there needs to be research on a lot of these things in order to help us to better understand how to measure them.
So, we are not saying how to measure socioeconomic position. We are putting forth that socioeconomic position has probably evolved to be the preferred concept over the concept of socioeconomic status. But there is no definite about how to measure it. I think the NRC report kind of tried to skate over that. We are trying to skate over that.
Suzanne, you said you are confused.
DR. HEURTIN-ROBERTS: Well, yes. I’m confused because I was finished writing my piece. I’m just jumping into this. I’m not sure where you are. But it sounds to me as though you are talking about disparities along different dimensions. One is race/ethnicity. The other dimension would be some measure of socioeconomic something.
DR. MAYS: Yes, that’s what we were talking about.
DR. HEURTIN-ROBERTS: What’s the question, I guess?
DR. MAYS: What the committee talked about earlier was that we did want to come down on the side of using the term “socioeconomic position” rather than status, because it’s more of a life span perspective. And what I was responding to in my comment, which was like kind of adding, flushing to a little bit the notion of socioeconomic position.
We had a discussion during the meeting, and in the discussion what was raised was the notion that what about White ethnic subpopulations? And what I was doing was flushing out so that people understood, which I thought I was saying what Audrey was referring to is we’re not saying not to do it again. We are educating people that there is a possibility of doing it, and that what this document is doing is it’s not only addressing race and ethnicity, but since we have added socioeconomic position, that the disparities in socioeconomic position allow us even more information.
DR. HEURTIN-ROBERTS: And when you’re talking about White subgroups, you’re talking about ethnicity.
DR. MAYS: Yes.
DR. HEURTIN-ROBERTS: Not, race, but ethnicity, so it’s already taken care of; and perhaps immigrant status.
DR. MAYS: Yes, but I think we were trying to do just a little educational piece. I think we know that, but the problem is that like today, there was a lot of discussion that went on about making some things clear, like defining race, talking about race as a social construct.
So, again, it was also I think to try and help people understand that within the context of White populations, ethnicity does allow them to measure it. But that also by adding socioeconomic position, we also end up learning more about the White population.
DR. MADANS: If you look at the CNSTAT report, it talks about always looking at the two together. You can talk about race separately, you can talk about SES separately, you can talk about — I’m sorry, I will not switch to SEP. I can’t. It’s been too long to translate it in your head. To me, that’s exactly the same thing.
DR. MAYS: That’s fine.
DR. MADANS: Or you can look at the cross classification. And you probably want to make those distinctions, which is I think different than saying you want to look at a race/ethnic subgroup among the White population. It’s easier to just define, because of the way the OMB classification is.
DR. MAYS: Exactly.
DR. MADANS: And there is no ethnicity other than Hispanic ethnicity.
DR. MAYS: See, and that’s what we heard from the states. The states really grapple with that.
DR. MADANS: Then they want to go back and use ancestry, and I think there it is muckier, because we don’t have something to point to and say this is the list that OMB uses, and that is by definition, what we mean.
DR. MAYS: And that’s exactly what the states were bringing up in the hearing. Okay, so how are we going to settle this? If I understand correctly, the suggestion is that we write a couple of sentences that talk about race and ethnicity, as well as socioeconomic position, and considering those things together. Does that make sense? Does that care of your point?
DR. HEURTIN-ROBERTS: Yes. You are talking about the second point under overall?
DR. MAYS: Yes. So, I have not said anything about where.
Suzanne, can we visit what you just wrote?
DR. HEURTIN-ROBERTS: Yes, and it may be too wordy.
DR. MAYS: Nancy, are you saying something?
DR. BREEN: I can hear you very poorly. Am I breaking up?
I just wrote something, a couple of sentences that I could either mail you or read to you if the connection is good enough, just to get the discussion going if you like.
DR. MAYS: Your sentences would be on?
DR. BREEN: On socioeconomic position.
MS. CAIN: I also have something on that as well. I think that was my assignment. But I’m willing to go with yours. Probably what we can do is incorporate them.
DR. MAYS: We’re going to let Suzanne talk right now.
DR. HEURTIN-ROBERTS: As I understood my charge, I was going to address this sentence about race that begins on line 73.
DR. BREEN: The one about biology?
DR. HEURTIN-ROBERTS: Yes, race and biology. And the way I have rephrased it is race, a social construct that categorizes populations based upon physical appearance is often mistaken for a genetically determined grouping. Is that too technical?
DR. MAYS: Can you repeat it one more time?
DR. HEURTIN-ROBERTS: Race, a social construct that categorizes populations based upon physical appearance is often mistaken for genetically determined groupings.
DR. BREEN: I like that sentence, but I think it needs to be followed up by something about what it is, that it’s a social category or something. Because that’s not in the paragraph already is it?
MS. GREENBERG: Maybe that needs to be two sentences. Say race is often mistaken for — and then say, however, it is recognized more of being a social construct.
DR. HEURTIN-ROBERTS: We could. The comment here was that they wanted to change the order to that sentence to put social construct first to emphasize social construct, rather than what it is not.
DR. MAYS: I think the gist of it is, probably what would be helpful is, because there is a point at which they wanted a definition of race.
DR. HEURTIN-ROBERTS: I gave you one, the social construct that categorizes populations based upon physical appearance.
DR. MAYS: I was just going to say so I think that having that helps to answer the earlier request for comments about race. It’s technical from some people’s point of view.
DR. MADANS: There are other parts of physical appearance that aren’t race.
DR. HEURTIN-ROBERTS: No, I know.
DR. MADANS: So, I don’t know if it’s all the way there.
MS. CANARD: I hope this comment isn’t inappropriate but, I just remind you of the context here. I think we need to be precise in our language. But we’re trying to make a fairly concise statement just to make the point that this is not an easy subject. So, if we want to get into technical definitions, I think we ought to think about footnotes.
MS. BURWELL: That was my point, because the American Anthropological Association has definitions, in addition to lots in the literature. And we could restructure the sentence and then have a footnote referring to those definitions that have already been out there.
MS. GREENBERG: You could just say race itself moreover is not well understood, and then footnote with this other information.
DR. MAYS: Okay, let’s make sure we have that. I like the notion of sending us off the American Anthropologic Association, because that’s a really good Website, with a whole discussion about it.
MR. HITCHCOCK: What about the OMB Website. Is there a definition of race as they define it, ethnicity as is defined there? Because we are talking pretty much here about OMB categories.
MS. BURWELL: There is, but it’s pretty consistent with the American Anthropological one. The anthropological association’s is longer, but the first portion of it is — OMB does have one.
DR. MAYS: OMB has one?
DR. MADANS: It’s in the directive.
DR. BREEN: Also, Harold Freeman had a conference a couple of years ago in which he was talking about race as the biological and social category, and trying to distinguish what those meant, and eventually coming down on the side of it being a social construct. That could be cited too. Suzanne, do you know the citations for that?
DR. HEURTIN-ROBERTS: I think they are probably many. It’s been said so many times.
DR. MAYS: Okay, why don’t we do this, because again, I think that we may be getting pretty complex here for what was just informational for people. And that is let us accept — Marjorie and Suzanne, I want to make sure we have the language. So, you made some changes to what she commented on.
MS. GREENBERG: I just was suggested it be two sentences rather than one, except that now have we agreed that maybe we should, in response to Susan’s issue, that we should just end that sentence by saying that it’s not well understood, and then put all this in a footnote.
DR. HEURTIN-ROBERTS: I would go with that if we could say that race is a social construct that is not well defined, and then footnote.
MS. CAIN: I wrote down John’s suggestion today.
DR. MAYS: We just got it. We’re just going with this one, and I thin that really says what we needed to say that answers it. So, can we do that? And then we will put the footnote being — as a matter of fact, Miryam was going to get us, she is going to print it out so that we have that, so we can add that as a footnote, and then so that’s taken care of.
Okay, I want to try and get some of these specifics down before we lose people.
MS. CAIN: Okay, let me give a try on what I understood my task was going to be. My only problem with this is a I start out talking about socioeconomics.
DR. MAYS: Are you at a specific line that yours is in?
MS. CAIN: Line 49.
DR. HEURTIN-ROBERTS: You are doing a definition of SEP, is that right?
MS. CAIN: Yes. Forty-nine is where it was asked for. I don’t know if this will go in as a footnote or exactly what. I start off with socioeconomic status, which is unfortunate, but socioeconomic status has traditionally been measured by education and income. However, more recent research has suggested that a broader view encompassing additional characteristics such as current wealth, and historical contextual variables such as socioeconomic conditions during childhood are important for health outcomes.
This more expanded view is referred to as socioeconomic position. Measuring SEP is a challenge as there is no consistent agreement about which factors should be included in SEP, or what time period during childhood is most important. Some of the factors may vary, depending upon specific outcomes of interest for the populations being studied.
DR. MAYS: Very good. You know they did a whole conference on this. Okay, let’s ask the question of where it might best fit.
MS. CAIN: It can be a footnote I think, right there.
DR. MAYS: I’m struggling with this footnote thing.
MS. CAIN: A footnote on line 2, the first time it’s used. Also on contextual factors such as socioeconomic position, note, and then you are going to have a long footnote.
DR. MAYS: Are we happy with it is as a footnote? You can tell I’m not.
MR. HITCHCOCK: I think so long.
DR. MAYS: Virginia, thank you very much. Just know I didn’t want it as a footnote anyway. All right, very well done.
Dale. We start at line 183 for you, or earlier?
MR. HITCHCOCK: I think 157, because you just added OMB in there. That’s the more aggressive paragraph.
DR. MAYS: I’m sorry, 157.
MR. HITCHCOCK: And I think I would just say assume a leadership role. The Department, Census, OMB, blah, blah, blah, to promote and undertake methodological research. Both promoting and adding a new word undertake methodological research. I don’t know that we need to have an adjective in front of leadership necessarily.
DR. STEINWACHS: [Remarks off mike.]
DR. MAYS: Yes, I like that.
DR. STEINWACHS: Recognize that it currently has leadership.
MR. HITCHCOCK: All right. Okay, I put promote in there too.
DR. BREEN: Instead of undertake?
MR. HITCHCOCK: Both.
DR. STEINWACHS: Promote and undertake.
DR. MAYS: So, DHHS should extend and intensify its current leadership role with other departments, the OMB, Census Bureau, and private and academic organizations to promote and undertake. Is that what you are saying?
MR. HITCHCOCK: Yes.
DR. MAYS: Jennifer, does that capture it?
DR. MADANS: I need some examples from Dale. But I had some sentences to add early on to above this.
DR. MAYS: Oh, okay, then, Dale, let’s just see in case we need to change any of this. So, if you are adding it right above this, overarching recommendations.
DR. MADANS: One 145, before you start into, “this calls for,” maybe something like the department has been involved in activities to expand and improve the collection of race, ethnic, and SEP data for many years. Major contributions have been made, including — and then Dale says he has some examples of where the contributions have been. However, work in this area needs to be expanded and accelerated. And then it goes right into this calls for a higher federal investment.
DR. MAYS: That’s good.
MR. LOCALIO: Just before this calls, you have an addition?
DR. MADANS: Right.
DR. MAYS: Can we have it?
DR. MADANS: You may.
DR. MAYS: And then Dale will give an example to go with yours? So, now we go back to Dale.
MR. HITCHCOCK: My examples are from our memo?
DR. MADANS: I have the bridging example.
MR. HITCHCOCK: I don’t have that of course with me, but I can —
DR. MADANS: And the measurement of disparity itself from the Healthy People. All that stuff that was done on how do you actually measure it once you collect the data. But I don’t know if you want to use that. But I’ll give this to you, and you can pick whatever examples.
DR. MAYS: Dale, did you have any others up in the recommendations, to enhance and promote the recommendations some more?
MR. HITCHCOCK: My next comment was on line 177, where I was going to say DHHS is urged to develop consistent strategies and mechanisms for the dissemination of data on racial and ethnic minorities. I was going to add there consistent with the OMB guidelines, but I don’t know if we need to add that or not. I’ll throw that out to folks. Maybe not. I don’t hear a good groundswell here.
DR. MAYS: What about do you have a celebrate and accelerate for two?
MR. HITCHCOCK: Accelerate the implementation is basically what I said. DHHS has accelerated the implementation of the multiple strategy approach developed earlier by the Data Council.
DR. MAYS: Can you say that again? DHHS should accelerate the —
MR. HITCHCOCK: Implementation of the multiple strategy approach to data development on racial and ethnic minority populations and subpopulations that was developed by the Data Council.
DR. MAYS: Is that the 1999 report you’re talking about?
MR. HITCHCOCK: Yes.
DR. MAYS: Why don’t we actually put that in, because that report was actually also promoted the NRC report. So, instead of just saying the Data Council, why don’t we just put in the report?
MR. LOCALIO: Can we put in a footnote there to the report?
MR. HITCHCOCK: Or cite it or something. We cited a bunch of other reports earlier on. We can cite this one.
DR. MAYS: I’m sorry, say that again. You have more than one report, you’re saying?
MR. HITCHCOCK: No. We heard a discussion this morning that was citing the AHRQ quality report. And in fact, I think you brought it up, putting in citations for these reports.
DR. MAYS: Oh, okay, I’m sorry. So there is kind of the reports we talked about before, and we will make sure we include the 1999 one. So, there is no celebrate yet. We have an accelerate.
DR. STEINWACHS: [Remarks off mike.]
DR. MAYS: It’s probably the quality of the data in the record, because there are lots of different examples of the kinds of things — misclassification, training needed for the people who collect the data.
DR. STEINWACHS: [Remarks off mike.]
DR. MAYS: Improvements in the quality of captured in the vital statistics record. How is that?
MR. HITCHCOCK: This is like 207. Look at line 207. It says essentially the same thing.
MS. GREENBERG: When you are talking about the quality of the race and ethnicity data.
DR. MAYS: All of this is on race, ethnicity, and SEP.
MS. GREENBERG: A broad statement to say improvement in vital statistics. A lot of people focus on the cause of death data.
DR. MAYS: So, how about improvements in the quality.
DR. BREEN: Isn’t is about accuracy?
DR. MAYS: Well, if you are talking about death certificates, yes, it’s accuracy. But there are also things about the whether or not you are reporting only the mother’s race, or whether you are capturing the mother and father. So, there are lots of different things that this would apply to.
DR. BREEN: So, accuracy, completeness. I’m just concerned that it’s not under the quality umbrella to understand specifically what kind of recommendations are being made.
DR. LENGERICH: Nancy, I was just saying that there is significant overlap between the subpoints under overarching recommendation number 2, and that which is under specific strategy number 4. And so, possibly we could look to eliminate some of the overlap. The oversampling is one. Improvement in vital statistics I think is getting closer as we talk about the specifics, follow-up surveys. And so, I think there is some over lap between those two.
DR. MAYS: But what’s the suggestion?
DR. LENGERICH: Well, my suggestion is to remove A, B, C, and D from number 2, and highlight them in the specific strategies section.
DR. MAYS: Okay.
MR. LOCALIO: You want to eliminate A, B, C, and D under 2?
DR. LENGERICH: And make sure they appear in the strategies under 4.
DR. MAYS: But I think what we should do is go to 4 now and make sure we capture the enhancements that are being talked about. So, what we will do is scratch out approaches include, and then strike A, B, C, and D. But Susan, can you make sure that as we get to 4, that we don’t lose any of these?
DR. HEURTIN-ROBERTS: I don’t seem to have a role in the production of the final report.
MR. LOCALIO: I’m doing the best I can, but I need all the help I can get.
DR. MAYS: Okay, here is what is happening. Right now he is capturing things. That’s all he is doing. He’s just making that what is being said at the table right now is being written down so that we actually have the record of it, as Miryam, as staff also did.
And then we’re going to give this file, and you would actually have the file with the things written down. to then try and polish that to make sure that it’s consistent throughout the document, and to make sure that for example, the note that I was making now is to make sure that we have A, B, C, and D; that we don’t lost it when we get to the next part. So, right now he is just merely putting in what’s being given.
MS. GREENBERG: When are you expecting this to happen then?
DR. MAYS: Expecting what to happen?
MS. GREENBERG: This polishing.
DR. HEURTIN-ROBERTS: And how is it going to get from his computer to my computer?
DR. MAYS: He’s going to give it to you.
MS. GREENBERG: And maybe Russ and Miryam are going to work with Suzanne on this?
DR. MAYS: Part of what I thought she would do is take the file, and work on editing it, and then ship it to all of us.
DR. HEURTIN-ROBERTS: I don’t have e-mail.
DR. MAYS: If you give it to either one of them, they will ship it then. You have the disk. So, if you give the disk back to them, then they will ship it to us. And we all will look at it. And if there are any little things out of place or something like that, we’ll finish it. And in the morning we can make sure that the entire file is done.
MR. HITCHCOCK: I have to leave. I want to comment on one recommendation that I have never understood exactly, and I’ve commented on it before. I think it’s maybe just ambiguous.
DR. MAYS: Will you say which one?
MR. HITCHCOCK: Yes, I will. I’m coming right up to that. It’s line 202. It seems like it’s the heart maybe of our report, the overarching recommendation. But it’s so broad. Does it mean which groups to sample? Which categories to include as items on ethnicity? What are we talking about in 202?
DR. MAYS: What I think it’s drawn from in terms of in the report — it’s interesting, because what I think it’s drawn from is there are discussions about lot’s of different issues in terms of data collection. Even the issue that was talked about in terms of privacy, the issue of how do we collect the data, what are some of the privacy issues in terms of collecting the data? When to do subgroups.
So, it is very broad, and maybe here it loses meaning. If it were like the front of — if it were a summary, and then you went and found it, then I think it would make more sense. But right now, probably as just criteria, it’s probably too vague.
MR. HITCHCOCK: Yes, I think so.
DR. STEINWACHS: One probably small thing, but it helps me, is that on 170 and then later again under 205, it’s conducting follow-up and dual frame sampling. It isn’t immediately transparent to me what conducting follow-up does for increasing — I don’t understand; the numbers I guess you have for ethnic minorities. And dual frame I’m interpreting as having an oversampling frame within a frame or something like that. That might just merit a quick footnote someplace, because if I’m having enough problem understanding it, it may not be that everyone will look at that and say yes, I understand the strategy.
DR. MAYS: Jennifer, do you have any comment on that one in terms of flushing it out, and then a footnote that we might use?
DR. MADANS: For the follow-up?
DR. MAYS: Yes, what is now current 2C.
DR. MADANS: I would delete the follow-up, because I agree with you. It must have been taken from something where it made sense, but on its own, it’s not going to help you. It may help you get more auxiliary(?) information about the group, but it’s not going to increase numbers. And I think this was about getting a sufficient sample size.
DR. STEINWACHS: Unless it’s response rate, or something like that.
DR. MADANS: Usually they go down. I think the dual frame — maybe something about using other sampling methodologies or lists if you have them.
MR. LOCALIO: Okay, this is 4D, because 2A-D are being incorporated into 4. So, we’re going to delete the follow-up. And Vickie, you wanted a footnote for dual frame-type sampling approaches? Or how do you want to expand on that to tell the reader what you mean?
DR. MAYS: Wait, let me ask a question first of Jennifer. I think on a couple of occasions we have had a discussion, particularly about when NCHS is in the field with a particular study, ways in which for example we could enhance increasing the numbers of racial and ethnic minorities, as well as decreasing the costs to do yet a different type of study, building upon say for example the sampling frame. I think that’s what we are trying to capture here.
DR. MADANS: Yes, I think that’s why the dual frame is targeted, because we were thinking about doing a national survey, and then oversampling in a particular area where you knew that you had a high concentration of a certain group so that you could do regional estimates. That’s what I think we are getting at here. The follow-up I think is something else. It would probably be easiest just to get rid of it for this.
DR. MAYS: But I think that we need to rewrite this, because I think if Don has a problem, and he has been sitting here, we’ve got a big problem. And I think that the more that we say it — part of it is just being too close. You kind of know it, and you are seeing it fresher than we are. And I know what it is we are trying to capture, and it’s almost like what she just said is probably more explanatory. So, I think if we do that, it would be better. And even to talk about the issue of regional estimates would be acceptable.
Audrey, you had an assignment.
MS. BURWELL: But unfortunately, privacy and cultural validity of data collection tools, I didn’t make the connection.
DR. MAYS: What I had said was that I don’t think it fits in F, and that that is not a good place to do it. And that if we can have a sentence, and put it someplace else, because I don’t think you can wrap it into F. And it may be where it’s about either specific data issues or cross-cutting policy and capacity issues. It might actually go under cross-cutting policy and capacity issues.
MS. BURWELL: To link the privacy?
DR. MAYS: Yes, either that or specific data issues. Well, no, I don’t think it fits in data issues.
Peggy, you had a paragraph.
MS. HANDRICH: I did, line 137, I changed it to read, an additional category of data issues and concerns, the types of information besides race and ethnicity that are needed —
DR. MAYS: Can you speak into the mike so that Nancy can hear?
MS. HANDRICH: Oh, sorry. It’s so hard to remember. Sorry, Nancy.
An additional category of data issues concerns the types of information besides race and ethnicity that are needed to meaningfully measure, monitor and eliminate health disparities. The most topics cited on which additional information is needed are socioeconomic position; geographic location; age; primary language; and other factors that contribute to health status and health care expenditures.
So, all I added was other factors that contribute to health status. And I hope it’s accurate to say that in a sentence that starts with topic cited, and I gathered that was correct, because you heard that in the testimony. And I didn’t get more specific, because that would invite controversy.
DR. MAYS: The only thing is I don’t know if it’s just health care expenditure or health care.
MS. HANDRICH: You have health care expenditures in the text.
DR. MAYS: Oh, okay, I thought that’s what you were saying you were changing.
MS. HANDRICH: No. So, all I did was add — I could have written other non-socioeconomic position factors.
DR. STEINWACHS: Since Peggy picked my favorite paragraph here, I had one other suggestion reading it. In line 137, it seemed to me that these aren’t so much as part of meaningfully measure, but are needed to understand, monitor and.
MS. HANDRICH: And eliminate?
DR. STEINWACHS: Yes, eliminate, but I put understand there.
DR. MAYS: Are needed to monitor and understand?
DR. STEINWACHS: Are needed to understand, monitor, eliminate.
DR. MAYS: Do we have any other pieces that are outstanding?
DR. MADANS: Do you want the possible wording for D if it’s still D?
MR. LOCALIO: Just for clarification, this is 4D, because 2A, B, C, and D have been moved to be incorporated into 4, correct?
DR. MAYS: Yes. So, what we want to make sure is the current —
DR. MADANS: Everything in 2 is really in 4.
DR. MAYS: Right. So, we just will figure which one it is, so I won’t worry about that right now.
DR. MADANS: Well, this would substitute for the D that was there, the follow-up, the old one that started with follow-up. How is this for a substitution: develop mechanisms to augment national samples to target specific race or ethnic groups nationally or in sub-national areas.
DR. MAYS: Are you sure you don’t want to say anything about dual frame?
DR. MADANS: It’s not really dual frame, because dual frame would — and I think this is why the confusion — means you have an external frame. So, if you do a dual frame on aging, you use the Social Security Administration frame. We don’t have generally another frame that lists people by race/ethnicity that we use. So, if we were going to do a telephone survey, that’s another dual frame.
But I think we were really talking about building on an existing national sample that is already in the field in state X, that we know from the Census has lots of group Y that we would like to make estimates on, but we can’t on a national area. And so, you take that sample and blow it up in that area, so you can make estimates.
DR. MAYS: Let me just make sure that I’m not also cutting something out here. I think for NCHS that’s true. For NIH, would you not have like for example this National Childhood Sample study that is going to be in the field, would not a dual sampling frame enhance some of the studies that you have in the field? See, I think for NCHS, it’s one strategy —
DR. MADANS: What’s the dual frame?
DR. MAYS: The second frame would be for example — and I think this is part of, unless I’m wrong, NIH has been talking about is when they do large scale studies like this, which they also move away from being an RO1 to a U or different categories like that, that it’s possible in some of those studies to determine — there is a mechanism in which you can come in and build on that particular study.
So, it is like a dual frame that can occur, where they are in the field, and then you come, and while they are in the field, and the field component is already underway, people have been identified, there is a sampling plan, you come in and you build on that to do either an additional, or I won’t call it fall back, because that’s a little different.
MS. CAIN: Things like us using the HIS, is that dual frame for something entirely different?
DR. MADANS: I don’t think that’s usually the way that term is used. I think it really means combining a population-based frame with a list frame and putting it together.
DR. MAYS: But don’t you build on what’s already going on in the field to do that?
DR. MADANS: Yes, but you don’t do more field, you get the sample from someplace totally different. You get the same from old people in Social Security, and you go to their houses.
DR. MAYS: Okay, I had a different understanding of dual frame than.
DR. MADANS: I think that’s the technical definition.
DR. STEINWACHS: My plea was not to use it. It seemed like it was a jargon.
DR. MAYS: Well, it’s clear from this discussion.
DR. MADANS: If we just said to augment existing samples, then it would be any existing sample.
DR. MAYS: Perfect.
DR. STEINWACHS: Sounds good.
DR. MAYS: I like that. I think that then does also include NIH.
Do you have any other comments?
DR. HEURTIN-ROBERTS: In recommendations N in the strategies, we use the word “dissemination” of data, and dissemination of findings. We never say to whom we are disseminating. Do we need to?
DR. MAYS: I don’t know. That didn’t come up, but that’s an interesting question. What do you think group?
MS. HANDRICH: I wanted to just build on that, and I don’t know if this is what you are getting at, but I noticed in the outline it lists the intended audiences for the report. And if the intended audience are those to whom we wish to disseminate theoretically, the state Medicaid programs are not explicitly included. Is there a reason for that?
DR. MAYS: No, I don’t think we excluded them for any reason. I think we were just thinking about the broader groups.
MS. HANDRICH: They are the largest probably purchaser of health care for minorities.
DR. HEURTIN-ROBERTS: This is really the audiences for the report.
MS. HANDRICH: So, I’m just throwing that out as a consideration.
DR. MAYS: Maybe you can say a little bit more about what you might suggest.
DR. HEURTIN-ROBERTS: My concern was when we discussed dissemination of data and dissemination of access to data, and access to findings in earlier meetings, we had talked about having community access, stakeholders having access to data, and so on. So, the way this reads, this could just be access to research or dissemination to more researchers or to government agencies, and not to the people. So, if we could even say to the American public or something, but just to make sure those people aren’t left out.
DR. MAYS: Can you tell Russell where you saw those and insert that.
DR. STEINWACHS: I was going to make one small suggestion on line 27. There we make the statement which I thought was good, that the country’s racial and ethnic minority populations have higher rates of illness and disease. I was thinking maybe illness, disease, and poorer quality of care. And then you cite the IOM “Unequal Treatment” report.
DR. MAYS: Okay, because Russell is doing that. I just want to make sure I get it down. Higher rates of?
DR. STEINWACHS: Higher rates of illness, disease, and poorer quality of care, line 27.
DR. MADANS: As a general statement though, that’s probably not true, because —
DR. MAYS: Oh, because you’re going to say about Medicare.
DR. MADANS: Than Whites. Maybe you don’t want to have the comparison. You haven’t used an example of Blacks, but there are other comparisons where it goes the other way.
DR. MAYS: They get care, but —
DR. MADANS: Actually, it’s not the care. If you are looking at death rates, which I think is life expectancy here, the life expectancy of Asians is much better than White. And here everything is against Whites. So, is there way you write it so it’s not?
DR. STEINWACHS: Generally have or are at greater risk of.
DR. MADANS: Maybe generally have would be better.
DR. MAYS: So, we need to say the country’s racial and ethnic minority populations generally have higher rates of illness, disease and poorer quality of care than Whites.
MS. CANARD: You could say higher rates of illness and disease and poorer quality of care than Whites.
DR. MAYS: Eugene?
DR. LENGERICH: On 194, under number 2, I have struggled with this for a while. Since this report includes health care, I’m never quite sure what or who — what they will interpret by treatment of primary and multiple race means. So, it almost sounds like a condition that is going to be treated, and I don’t think that’s what we mean. I think what we mean is something about analysis or interpretation.
DR. MAYS: So, what’s the terminology we want to use?
DR. LENGERICH: Analysis and interpretation.
MR. LOCALIO: Primary and multiple race data?
DR. MAYS: No, analysis and interpretation of primary and multiple race.
DR. LENGERICH: Analysis and interpretation certainly kind of implies the data for primary and multiple race.
DR. MAYS: Say the whole thing.
DR. LENGERICH: Analysis and interpretation of data for individuals’ primary and multiple race categories.
DR. MADANS: It was better shorter.
DR. MAYS: Yes, I agree. How about if we just go back to analysis and interpretation of primary and multiple race categories?
MS. PAISANO: On line 61, I just changed the words after or instead — or of other population groups that are concentrated in a specific geographic area of the country.
MR. LOCALIO: I think we can leave off of the country though. I think that is assumed.
DR. LENGERICH: Since Jennifer was working on this, and Don was working on this comparison here in line 27, and I think the suggestion they made is good, generally have rates of illness. I think the generally have is really appropriate. There are places in here where we talk about — we use the superlative, the greatest risk; groups at the greatest risk.
And I guess I’m uncomfortable with using it in a superlative, because we have not gone through any process to do that. And I think that if we could just drop EST and call it at great risk, it would be more clear. And the statistics keep coming back, well, I need a P value after that greatest. And there are three or four or five places in here where that could get cleaned up.
DR. MAYS: I think that greatest may exclude groups sometimes that we don’t want to exclude, so I think that’s a very good point. It’s the point Jennifer is bringing up. So, I think it’s very important, because I could see later when it is used, some groups would get selected, and some things are not, and others we would have wanted those groups selected. So, it’s a very good point.
MR. LOCALIO: Just a practical issue. Gene, if you would highlight those, and so when they do the edits tonight, we can have all of those.
MR. LOCALIO: I will make a note for you.
MS. HANDRICH: Line 69, it reads racial and ethnic identities can change over time. And is that meant to be self-identities?
MS. BURWELL: Yes.
DR. MAYS: We should say self-reported racial and ethnic identities. It should be probably self-reported, because that’s actually the issue. It isn’t that it really change. As you age, you become something different.
MS. BURWELL: Is Nancy still there?
DR. MAYS: Nancy, are you still there? No. Go on.
MS. BURWELL: At line 208. That’s the one that also dealt with the two comments on privacy, and to remove F.
DR. MAYS: No, we keep F; F is separate from what you were actually working on. We keep F. We are trying to also put in privacy.
MS. BURWELL: Well, what I suggest is if you were to take the language from F, and write at line 69, where we talk about the US is an increasingly multi-racial society, and the racial identities, and the number of subgroups is daunting. Then I would say, which creates a greater need for culturally valid data collection tools. And then I put a period there, and put a capital T on the confidentiality of personal information can be compromised when group size is too small, thus limiting data use. And it sort of ties it together with the discussion on privacy.
MS. CANARD: Just so we stay focused on what the problems are, rather than getting into solutions, because I think it’s been a problem in the past documents. There is a tendency to start talking solutions when you are trying to identify what a series of problems is.
DR. MAYS: Audrey, let’s see if I can do it this way. The confidentiality of personal information can be compromised when group size is too small, often resulting in greater concerns by some populations or by subpopulations.
MS. BURWELL: I don’t think it’s the concerns of the subpopulations. I thought it was mainly the disclosures that we were trying to protect.
DR. MAYS: No, what he was actually talking about, he being Jeff, when he brought up the comment — Jeff brought up the comment, and what Jeff was saying is that we need to like study or better understand for example the concerns that the person, the identified person to participate in the study, or the identified person to give us their race and ethnicity, the concerns that they have about privacy and confidentiality. And he was saying that this is something that we need to learn more about, so that we can prevent it from happening.
DR. STEINWACHS: [Remarks off mike.]
DR. MAYS: So that it’s self-report. Not that racial and ethnic identities change over time, but that the self-reported ones can change over time.
DR. STEINWACHS: [Remarks off mike.]
DR. MAYS: Yes. What we are talking about here is that one of the problems is that when you are trying to do data analysis, but even if you were to follow the same person in a data set, it might be at some point in time that they were this. And then you give them this unique identifier, and then later you can’t understand why they now gone from Native American and African American, to now they are Native American or American Indian.
DR. STEINWACHS: [Remarks off mike.]
DR. MAYS: So, suppose we say self-reported racial and ethnic identities can change over time, as well as depending upon context.
DR. MADANS: Or that the reporting is affected by why the data are being collected, who is collecting the data. I like that.
DR. MAYS: Okay, can I ask you then to take a crack at just that?
MS. CANARD: Bear in mind that the point of this paragraph is that it ain’t easy to do this. This is a complicated topic.
DR. STEINWACHS: Well, let me try this on you, and then I will relent. We say for example, the US is increasingly a multi-racial society. But down on the next one, the number of subgroup is daunting. Racial and ethnic categories change over time, or classifications change over time. I thought maybe the idea that like in OMB, we have gone from one set to another.
MS. CANARD: I think that’s the big point of the whole report.
DR. MAYS: No, it’s more what Jennifer was. Jennifer, can you take a crack at that?
DR. MADANS: What line are we on?
DR. MAYS: Lines 69 and 70. And it was actually if we had just captured your words then.
MS. CANARD: The self-reported racial and ethnic identities can change over time as a function of something or other, the specific context in which the data are being collected. You said something like that.
DR. MAYS: Can change over time and be dependent upon the specific context.
DR. MADANS: I would take out the change over time. I think that’s what you are suggesting, and just say that the reporting. The reporting of racial and ethnic identities is affected by who is collecting the data, the purpose for which the data are collected, and other characteristics of the individual.
DR. MAYS: Anything else? Do we have any assignments?
MR. LOCALIO: Jennifer, that first assignment that you had, the previous one.
DR. MAYS: She has it written. But what we don’t have is Dale’s. Dale comes in very early, so we can get it from Dale in the morning.
MS. HANDRICH: I think it’s good to have examples in the text, but I don’t know that the examples are so compelling for this summary.
DR. MAYS: I agree. It’s a high level document.
MS. HANDRICH: I think the summary can get along without them.
DR. LENGERICH: I guess, Russ, since you are going to be looking at this for the last time —
DR. MAYS: Actually, the process at this point is it’s going to get edited tonight.
DR. LENGERICH: Well, just my request is that in strategies 2 and 4, where we have multiple lists, just make them parallel, because I think sometimes we don’t do that. So, phrase them so that they are parallel.
MR. LOCALIO: I think 2 is being dropped out, and being incorporated into 4.
DR. LENGERICH: No, this is in the specific strategies section. Parts of 191 and starts of 201, just make them parallel structures. When we make bulleted lists or numbered lists, it just helps me if they look the same. That they start off with the same kind verb or noun or adjective, or whatever you are starting with.
DR. MAYS: If it is appropriate, we will do, because I think there may be a little bit of difference in terms of where these things are.
Are there any other outstanding comments?
All right, folks, this is one of those processes where it’s very difficult to do. I appreciate that people just hung in there and did their little assignments, which became big contributions. Let us see if we can get this through, and I appreciate all the help.
Now, what we need to do is have some conference calls and e-mails to deal with the report, because we didn’t do that. And also my plan had been, which I discussed with Marjorie is I wanted to move on and do something things other than this report. So, we really do have to have a conference call.
Let us adjourn.
[Whereupon, the meeting was adjourned at 4:45 pm.]