[This Transcript is Unedited]
Renaissance Hotel
999 9th Street, NW
Washington, DC 20001
Introductions, Review Agenda - Dr. Vickie Mays, PhD, ChairMPH, Department of Psychology, UCLA
Discussion of Implementation the Collection of Race/Ethnicity - Invited Guests
Future Directions for Further Work in the Area of Data on Race/Ethnicity - Subcommittee
Discussion of Functional Status Report (FSR) - Subcommittee
DR. MAYS: Okay. We are going to get started because you know we are a little bit off schedule. We still one of our guests here, Dr. Roderick Harrison. What I wanted to do was to be able to at least take -- because he needs to leave -- to at least take some time to answer any questions about some of the items or issues he presented or to discuss with him ways in which, for example, issues that were raised might be relevant for us to think about in terms of future activities on the part of the Committee.
So what I'll do is do it by asking each of you to introduce yourselves first by going around and then open it up for comments and questions. Do you want to start on this side?
MR. SCANLON: I'll be happy to start, yes. I'm Jim Scanlon, Roderick. We talked by phone. You painted a pretty bleak picture of what the revision has done. I have two questions.
One is, is there anything that HHS working with the Census Bureau could do in terms of developing an agreed upon reference set of estimates that would be target maybe at the national level and state level or was the problem more fundamental than that, that there simply is no way of creating the new distribution according to the specification?
DR. HARRISON: I think a lot of progress could be made if adequate bridge statistics are constructed, and the Bureau does have plans for surveying which was announced in the FEDERAL REGISTER notice, but I'm not sure that they got any or responded to comments.
They will be fielding a survey in which they will sample households where somebody reported more than one race in the general population, re-interview those households in a split panel kind of design. Some will get the 1990 version-like question and some will get a 2000 and then reverse the order and they will use that.
I think that survey could provide excellent statistics on how people would have reported absent the changes which is what a genuine bridge is as opposed to the allocation schemes as discussed in the bridge report.
I think the question or the problem at this stage is, and I don't know. I guess Jorge is not here. At what level is that survey designed to give estimates for, at the state level, county level? I would have argued that what you really want to do is sample the counties where the differentials for any particular group exceeded some threshold.
And concentrate on the counties where you need a bridge, where you can't get away with just saying their either small enough for multiple response reported that we can ignore this. I think the critical question at this point is: Can that survey still be a vehicle for providing useful bridge statistics? If so, at what level of geography will it provide it? Will that be adequate for the crosswalks and vital statistics?
If not, I think the federal system will start looking to the American community survey and really go after this on a several year basis to get -- I really do think that at the end of the day, we're going to need county-level statistics, but you're in part of the system that really knows better whether that's, in fact, the case or whether state-level estimates, whether you can construct models based on state-level estimates.
MR. SCANLON: I would think for vital statistics, you'd really like to have the county-level if you could. The state level obviously would look good then.
DR. HARRISON: I think those are the kinds of specials that you need. There should be with the birth and death records and with the population estimates program, this is where a lot of this could really be worked out, produced and provided to the other federal agencies, education, et cetera, and also the civil rights agencies.
DR. MAYS: Others have questions? Also Jennifer has joined us. So, in terms of Jennifer's presentations, if there are questions.
DR. FRIEDMAN: I'm Dan Friedman. I'm a member of the Committee. And I'm concerned about a separate type of bridging which is the bridging from the Census questions and the vital statistics allowable questions to the two question format, to question, five raised format that allowable for all the other data collection systems. Where you don't have other race or some other races, I interpreted as kind of allowable response category.
And I'm wondering from your perspective, based upon the Census results to date, whether or not that two-question, five-race format that all the other data collection systems have and they need to comply with whether you think it's going to work or whether you think that the Census format is going to provide better data or whether we need to go back to define that?
DR. HARRISON: I think as I mentioned, the survey system like CPS and such, you're getting increasing other responses and I really think that the recognition needs to be that there are populations out there that will not be forced into five and probably need that option.
DR. CARTER-POKRAS: But that's the majority of them aren't as fast.
DR. HARRISON: So if you go to a combined question, the problem is largely eliminated, a question like Black/Hispanic.
DR. CARTER-POKRAS: We were hoping in the initial test that putting Hispanic origin first would really take care of that because we saw the test results that there seemed to be a substantial reduction in the reporting of the race by Hispanics, but in the Census it looks like we're back up to the same percentages that we were before, about 40 percent or something, with other race and about 97 percent of those that report other race are Hispanic. So that's kind of pushing us.
DR. HARRISON: Now, one thing with this. The modified age/race file does usually provide the bridge quite adequately in the past from the system with the other race to those without. And I'm not sure that I see any complications with the multiple race that would make the MARS(?) less efficient in providing that. I think that's a bridge where there's a good history, a good track record that should serve as well in the future, as well in 2000 and the future as it has in the past.
DR. CARTER-POKRAS: This comparison between the two-question format and the single-question format, to tell you the truth, in the HHS we had almost a half and half split before the new federal standards took place, about half of our data systems used the two questions, half of our data used a single question.
And we never concerned ourselves as to whether they're collecting information in a different manner with the impact or the reporting of the information. We've never made that comparison and going through the process showed us that there is an impact.
And for Hispanics, it would have been dropping by a third the reporting, the count and percentage of Hispanics going from a two-question format to a single question. So that was part of the process and one of the things that was considered.
DR. MAYS: Jim, do you have any comments in terms of how it's worked for you all in terms that you need to ask?
MR. WEED: From the data collection standpoint, we've always had another category, but the edits that we use in vital statistics are simply computed away so that we never accomplish another category, some other race. That's basically the way that vital statistics has always been handled.
We can make it coded to some number like eight and then in the edit it's imputed to the last record, the race of the last person, of the last record we processed. Census does something different. They know who all is in the household. So they can look at other people in the household and see if they gave a race, and then that race would be used for some other race.
For example, if they're Hispanic and say White, then somebody in the household is Mexican, then they could use that and they could use a hot deck arrangement with other households in the neighborhood. In vital records, we don't have that capability.
So you just use the last record. So we just simply, we code other race for people who would want to put something down that doesn't fit the groupings, one of the groups, one of the standard categories and they're mostly Hispanics, but they'll be Salvadorans, Guatemalans, Costa Ricans, Mexicans, everything. Anything from Central and South America will usually end up in some other race and we will probably continue to impute them in some fashion.
DR. NEWACHECK: Do you impute in HIS too?
MR. WEED: Yes, the HIS, I think it does. I'm not too familiar with it.
DR. MAYS: Do you see any other fix to that?
MR. WEED: The recent vital records is what we've always done. We've always had some other race code for data collection, original coding. But the edit, as I say, gets rid of it. We'll probably continue to do it and in the new certificate revision that we're hoping to implement in the next few years will have some other race as an entry just like the Census format.
We're planning to use the same format, the same 15 check boxes, literal write-ins. We hope we can have an edit procedure that does almost exactly the same thing the Census edit does so we can generate the same kinds of data. And the MARS file that Rod was talking about is basically what we're looking for now from the Census Bureau.
We want that MARS file because it eliminates all the other race. We don't use some other race. Again, impute it away and the Bureau has already done it actually. This year they incorporated the MARS file editing into the regular decennial census edit.
But they're having a little problem with it which seems to generate from the fact that a person who checks White and writes in Mexican and, therefore, becomes in the PL file, the Public Law file, because by racial they're White and some other race.
The problem is that if you take the some other race and impute it or run in through a hot deck, you may get a Black, you may get Asian. You may get something else and that could make them a true bi-racial. You're, in effect, creating a bi-racial out of somebody who maybe wasn't bi-racial. So they're dealing with this question of how to work that in so they at least have their edit check MARS file.
DR. STARFIELD: But you use the term "bi-racial". That's where we get into the problem. I'm sorry. I should let you finish and then I'll raise the issue. The issue of the term "racial". I guess the problem is that we have different needs for different things that we look at.
I suppose that for some bio-medical research, you probably want some notion of genetics. Did you come from a population that was geographically isolated? That race category, but for healthcare, we want to represent discrimination. So how we're going to get that information will differ depending upon what the purpose of the information is and I think really what we're grappling with is coming up with a system that gets us what we want for the purpose we want it and probably one system won't do it.
DR. CARTER-POKRAS: We were actually discussing this as we were waiting for the subcommittee meeting to start, and from many of the discussions that are coming out what seems to be the direction and focus we're heading is that maybe part of the problem is trying to answer all of the questions with one approach.
Maybe, as you're saying, we need to be looking at other measures. For instance, as you know, the behavioral risk factor surveillance system, they're pilot testing in six states, six questions that Dr. Kamara Jones and others with CDC are developing and they're going to be looking at perceived race is one of the measures that's in there.
Perceived race, when we talk about an area of discrimination, using our data systems to monitor for discrimination, you have perceived races. If we're talking about access to care, in addition, maybe we also want to look at language, look at some other cultural aspect also. In other words, thinking, if it's a social construct, looking at more than one measure of that social construct.
MR. WEED: Perceived by whom? You said perceived race.
DR. CARTER-POKRAS: Not self-report a perceived race of others. How do others perceive you?
MR. WEED: But it's still self-report.
DR. CARTER-POKRAS: But for administrative data systems, all the times we don't know whose reporting that information. That may actually be the race there.
DR. MAYS: That's the interesting thing is that I think people perceive that something -- the social science research will tell you that sometimes people perceive that that someone thinks that that's not the dimension upon the discrimination is actually occurring.
DR. STARFIELD: So you really want the providers.
DR. MAYS: The interesting one is like when people are of mixed race and you look and you can't tell. You say this person is a Latino and they say no, they're really African-American. I remember because I'm on Kamara's little e-mail list. I think there are interesting issues about asking the person what they perceive and then when you went in the records, what you find is that the disagreement is a little higher than what the person things.
DR. FRIEDMAN: In looking at births where it's the parents reporting their race, self-report versus hospital discharge datasets or administrative records.
DR. MAYS: The disagreement is about what?
DR. FRIEDMAN: For Hispanics, it's off the charts.
DR. STARFIELD: Why are we really interested in Hispanics? This is going to seem like a silly question? Why are we really interested in why people come from a Spanish language heritage rather than some other language heritage? Wouldn't it make more sense to get country of origin and you can use a Spanish-speaking country or non-Spanish speaking country.
MR. WEED: As a matter of fact, in the Hispanic item, it's broken down by country of origin and we do collect information on other -- Puerto Rican, Cuban, Mexican -- other Central, South American.
DR. LENGERICH: Have you looked at some of those, the tendency to classify as some other race according to the different Hispanic groups?
MR. WEED: Yes.
DR. CARTER-POKRAS: They tend to be newer immigrants.
DR. LENGERICH: So it is differential.
MR. WEED: Something like 97 percent of the some other race are Hispanics.
DR. CARTER-POKRAS: If you look at, for instance, Cubans are less likely to report some other race than some of the more newer immigrant groups. Well, they're higher class and they see themselves differently also.
DR. LENGERICH: So there is differential there. I guess then a related question too was a concern or question about differential ways to report race by geography as well and if we do go to creating county bridges, you'll have to apply some system to all counties. We're not going to be able to collect and run the data for each of those. So we'll apply some sort of systematic method to all counties and I'm wondering if there are geographical differences as well.
MR. WEED: I don't think there is.
DR. HARRISON: I think the reason it's important to get down to the common level is that I would expect somebody who reports as White and American Indican in a reservation county to have very different ratios than those that Jennifer cited on a national survey or if it's Fairfax County, Virginia or something. So it's going to vary very much for the American Indian and for each of the populations, Asian population.
DR. CARTER-POKRAS: Part of that was an educational campaign from some of the advocacy groups that they wanted to make sure that American Indians got counted. So they actually were communicating, please make sure that when you check your Census form, that you identify yourself as American Indian.
DR. MAYS: Let me just check in and see where we are because I do want to get to some other parts of the agenda in terms of questions. I see we have a couple left. Any others? Why don't we try and take these question? I know Rod also has to get on the way. I think, Jim, you're able to stay with us for a bit longer. So why don't we do that and see if we can get to some other pieces of the agenda.
MR. SCANLON: Roderick, again, the turning from the statistical public health surveillance to the civil rights enforcement uses of the data, the OMB-issued rules about how to count, what's a civil rights number when you have in the combinations. You talked a little bit and your paper discusses how different these can be depending on the rules that OMB is assigning.
In other words, if you take for a combination of two, if the assignment rule, if it's like take the other mention, you were describing this in your paper. In some cases, it has a very dramatic effect on what the total population would do. What do civil rights folks end up doing here? Do they use a range?
DR. HARRISON: No, they'll be going with the allocation procedure issued in that March guidance which is keeping combinations White with a minority race will go the minority race. I think for the calculation of the numbers that they will use is fairly straightforward.
The question is whether those numbers are vulnerable to challenge by employers and other who might say, if I know Jennifer's little slide that shows 80 percent of the people who report is White and American Indian in the NHIS if your primary race is White and you're a civil rights agency that has put them all as American Indian, if in the rare case that they're not many places where there are enough American Indians for EEOC to bring case.
But if I were an employer involved in such a thing, I would certainly respond back, well, you've inflated the number that you're now holding me to and the evidence is right in the NHIS research which OMB is part of the guidance. So you know you're inflating the number for this population where 25 percent of Blacks report as White. We need to follow up on that at HIS. It's at least 35 percent.
DR. STARFIELD: Twenty-five percent of Blacks report as White; is that what you said?
DR. HARRISON: Twenty-five percent of the people who report as Black on the follow up give their primary race as White. Those numbers are upwardly biased. The civil rights counts will be upwardly biased and I think it's a question of whether -- I was just talking to some people from the EEOC yesterday who suggested that most employers, particularly those with federal contracts, are simply interested in coming within the compliance so that they won't challenge it.
But I think it is right for challenging if there is some perverse employer who is fed up enough with the whole system and is part of the anti affirmative action crowd or the people from those kinds of efforts see the vulnerability which means that I should stop writing about it. I could sequences moving where somebody would try to make a case.
DR. CARTER-POKRAS: But there is a rationale and that is multi-racial persons are not a protected group.
DR. HARRISON: There was also the rationale that if a person who sees themselves as White/Black or White/Asian is discriminated against, it would most likely be because they appear to some employer or lender as Asian or Black, but unfortunately, what you're doing again is you're using a denominator coming out of the Census where people have self-reported that with a numerator which the employer has collected in their or a banker in their loan applications, the two might not match.
I mentioned in the paper, if I'm a school and I happen to know from some student's essay or from an employee's essay or their application that they have one Black/White parent and you're not counting them in the Black/White category because they reported as Black, but another person with a Black/White is getting counted as Black/White, it's the fact that people who are in the same class by definition as parentage, can end up in any class defined by self-report that creates these horrendous numerator/denominator things in situations that might be unfair to people charged with discrimination.
DR. STARFIELD: I think compelling is Olivia's comment that they're not equally protected.
DR. CARTER-POKRAS: Multi racial people are not protected. When we talk about the fact that the numerator, the way we collect information, that the numerator and denominator don't match, that has often been the case when the Census data was collected using two questions and our numerator data was used using a single question.
There seems to be an impact in the counts and percentages that are reported and the different ways you collect the information. So that concept of having the numerator not match the denominator, that concept is not a new concept. It's not new to the fact that we have standards.
DR. HARRISON: It's not a new problem. It just complicates it by some factor. I think what is new, what might become new is the public visibility of that. In the civil rights context, that's what I worry about. In the health context, I would worry about your ability to produce what used to be considered simple statistics on what is happening to the disparities in disease rates of other kinds of basic indicators that now could show different results depending on how the multiple responses are calculated and how they're used.
The only one that I think you really want to use is one that would be based on a genuine bridge where you have some sense of how the multiple, which the NHIS follow up provides a good proximal where you have some sense of how this person would have reported in a single race system in the past and, therefore, can say I'll take all minority people reporting minority race and White and put them in a minority, which we know, will misclassify some.
But know, here are the percentage of people in this county who report White/Asian who are likely to be White and who are likely to be Asian based on that. If you can get that bridge in place, maybe you can do things, but you're going to start publishing a column of data very possibly about birth rates or death rates or cancer rates for some multi racial aggregate group or for combinations like Black and White.
If that is done and if people don't question what those statistics mean, I think you're setting statistical literacy back several decades. It's saying we collected the data in these categories who have been reported in these categories, even if the category is substantively meaningless. The other race category in the Census publication has been pretty much substantively meaningless.
It's not a good proxy for the Hispanic population. It's not a good proxy for any population that anybody is interested in, but we publish it so that the totals add to 100 percent. That's what you might be doing here, but you're going to have a lot of people who are going to look down this column for Black and White cancer rates.
And say it's a rate that's between the White and the Black population unless you find ways of indicating to people that the data should not be used that way, that it probably does not represent the bi-racial population in the sense. And I say this because I read Project Race that Susan Graham thinks she's going to be getting from the improvement in the statistical system.
DR. CARTER-POKRAS: Not exactly. According to NCR which she was quoted on, they've been informed that they're not going to get that information and that's why they wanted to have the press out there that something needs to be done because they've requested this information.
DR. STARFIELD: We're already in a situation and I want to ask you about it too, about where the journals don't even want the data, won't even let you publish a paper.
DR. CARTER-POKRAS: I was explaining that to Roderick about the National Committee on Medical Journal Editors that in May 2000 issued guidance which includes wanting to replace the term "race" with "ethnicity" or "ethnic origin", basically justifying when you are using race in your presentation of results. The question is how the journals are now interpreting that and some of the journals are really making it quite clear that they're going scrutinize submissions very carefully.
MR. SCANLON: The APHA journal is, usually about 75 percent of the content is usually related to special populations.
DR. CARTER-POKRAS: PUBLIC HEALTH REPORTS has already made that decision that the term "race" is now going to be seen in quotation marks.
DR. STARFIELD: A lot of the journals have done that. The major journals, the Vancouver Group, which are the major journals in the world, they have made a statement.
DR. CARTER-POKRAS: That's the international Committee.
DR. STARFIELD: The International Committee and there are lots of other journals that have done that.
DR. MAYS: I think the direction we're going in is part of what I think the broader discussion for the group needs to be in terms of what it is that we want to do in terms of continuing work in this area. I don't think there is a lack of things, but I think that we do need to have, to some extent, a clear focus for what it is that this group's mission and special area that I think we can actually comment on to the Secretary.
One of the questions that I was actually going to raise before we say what do we want to do is to get us to think about, I think there is a very significant question and this is where I agree with Rod and I may be in a position where having read his paper when it was part of the Levy Group and there's a whole group of papers in which a lot of work is already being done.
The question I think we have to ask is that now that we're moving towards the collection of race/ethnicity, what is the value relative to vital statistics, what is it's value in terms of health status and it's value relative to health disparities?
I happen to think that part of the problem, and you started talking about that, is that as we collect race/ethnicity, we want to use it for lots of things. I think part of the problem is understanding it's value and how it should and shouldn't be used to some extent. It's an interesting issue to talk about using the collection of race/ethnicity for health disparities.
In thinking about this, when we talk about the issue of health status, where a particular stands relative to a disease, that's very different of what is the dimension upon which you were discriminated against? What is the dimension upon which there was an inequity, there was an inequality and then we have to think about, is race all that we should be pushing to ask?
Or should it be that we're talking about things like socio-economic status, that we're talking about gender, that we're talking about density? It makes a big difference and this goes to your point. It makes a big difference, for example, to be an Asian in California and to be an Asian in Iowa or Kansas or someplace like that.
There are different places where density, staring to really getting at pure social science, that begins to lead you down the path of understanding this rather than it being that if we know your race and we know the procedure or whatever the particular outcome is that we're interested in, then we know whether or not you were treated fairly.
Sometimes a difference is not bad. Sometimes a less than is not necessarily bad. We've really got to think more seriously about this. I would almost propose that one of the things that we could bring some clarity to is this question, and I think it's important, is what is the value of race/ethnicity in health statistics?
We haven't seen this part yet either. For those of us who live in places like Hawaii and California where we have people who identify with one or more groups, the question really is, you now know this, I expect you to behave differently.
The question is: What is it that the federal government is going to be able to do differently based on the collection of this data? Are we now prepared to do things differently in terms of healthcare? Do we have a discovery in terms of some biologic differences that we now are going to do treatment differently? We have a public that I think and I don't know how we would want them to respond.
DR. HARRISON: You're talking about multiple race?
DR. MAYS: Yes, in California, the attitude to some extent is you've collected it and my expectation is you are going to use it for my benefit. The benefit that's expected is that now you can bring it down to this very narrow level of saying that if I am a Hawaiian/Japanese/Native American, that you can tell me something unique about my health.
DR. HARRISON: I think that's exactly the problem.
DR. MAYS: Right. I'm in one of those states.
DR. HARRISON: Let's understand this. The change was made not in order to provide needed for better or improved statistics on multiple race populations, their education, their health, anything. If as a social scientist, you were asked to devise a federal collection system that would start to provide useful statistics on these populations, you would probably ask people, tell me the race of your parents and maybe your grandparents. Maybe also tell me how you self-identify.
But this huge self-selection factor, this 50 percent of people who probably are bi-racial by parentage, don't report as bi-racial with those races in multiple response. It means that this data is going to be virtually useless for telling these combinations of people how their health, how their education.
It's more like an opinion poll. People who prefer to be called African-Americans as opposed to Blacks, differ in these ways in their education, which is an interesting question, right? This really would come down to people of the population of people who might report as bi-racial based on parentage and other criteria, those who actually do differ from people who report one race maybe from people who have multiple heritage, but report only one in these ways which might be interesting if uninterested in how racial identification impedes or facilitates a student's progress through school which might be much less useful if I'm interested in cancer rates or cancer treatment.
Again, if two people walk into a hospital who have the same parentage and one is self-identifying both races and the other as one. I am not at all clear how that is at all useful for understanding health disparities until and unless you have decent statistics first on the population defined by parentage and then on those who do and don't identify as single race.
DR. MAYS: I agree and it's in a funny kind of way and I don't want to get into a long debate here. There are some things I think are more fixable than others. Part of the data that we're basing some of this discussion on was collected within a charged environment in which part of the suggestion to people, and Olivia just brought this up, there's a lot of meaning here in terms of what you say. Some people are even told about --
DR. HARRISON: This is true, but we've conducted surveys like the NCS before. You go into the HIS and you'll see this 50 percent ratio long before this was a public issue.
DR. MAYS: I think that it was collected and that people will fluctuate in when they say what. I would almost bet as a survey researcher, is that over time, with a set of instructions we will be able to reduce that to some extent when we're clearer about what the outcome is and people are also clearer about the value of doing this or not doing this, which I think is like a dialogue. I'm not saying we're going to totally, but I think we're going to reduce that 50 percent as these dialogues take place.
DR. HARRISON: This is very possible if, in fact, that becomes an objective. I think the honest fact is that the change was not made in order to produce statistics on multiple race populations. The change was made in order to allow people to report their self-identification.
It's like some people have assumed that because you do the first, that the second follows and it doesn't. There's a great chasm between fixing the problem and allowing people to report their self-identify and collecting statistics that my be useful on these populations. Collecting statistics comparable on these groups that you've collected on racial groups in the past.
That's where it would take an immense amount of research and work to turn the question that is designed to allow people to self-identify into statistics that would actually tell us something about these populations.
DR. CARTER-POKRAS: I was also working closely with Roderick at that time and during this five-year period for the review that is also my recollection that the intention of initiating this discussion was to allow people to self-report more than one. We would hear these heart rending stories about kids would be made fun of, ridiculed, et cetera, and not being allowed to select more than one race or report more than one race, their parents not being allowed to do so.
DR. NEWACHECK: Can I ask you just one clarifying question. In terms of the inconsistency of self-reported multiple races over time, were there cognitive interviews done with any of the people involved to try to understand the differences in reporting or any other attempts to get deeper into?
DR. HARRISON: Yes, there were. Some of them were in reports issued by the Census Bureau and Bureau of Labor Statistics. Essentially, you got the gamut. You got a lot of Blacks, for example, who said, yes, I'm bi-racial, but given where I was born, when I was born, everybody followed the one for our group and I still do.
DR. CARTER-POKRAS: Susan Schecter was one of the ones who was working at the National Center for Statistics and was doing some cognitive testing with mothers who themselves were multi-racial and thinking through how they report themselves for the birth certificate. So that testing would be good to follow up on.
DR. MAYS: Let me put a proposal on the table to think about and I think part of this is a way to move us forward because I do think that are some decisions that we need to make, and that is at least from what I can determine of what has gone on today, it's clear to everybody sitting around this table that there are a lot of issues that are going to arise as a function as the collection of the data on race/ethnicity, the method of the implementation of the data collected, and that there are policy issues beyond that, et cetera.
I think it might behoove us to think about ways in which this group could try and bring some clarity to what the issues are. We haven't heard from some of the federal agencies as to how they're implementing this. I think that's the next stage in this discussion.
What today was to be about was to understand what the issues are. I think the next day has to be some update on how the various several agencies are trying to implement the standard. Then what I would suggest the work of this group would be to think about having some hearings or a structure in which what we begin to do is to look at what some of the compelling issues are.
I really would like to put it at this broader level of what is the value of collecting the data and looking at what the issues are then once it's collected and to think specifically of all the way from the measurement side to the policy side, but keeping our focus on vital statistics because I think what happens in vital statistics is sometimes different for states than at the national level.
And then talk about health statistics, in general, because the user groups are different, the purpose of what we need to do is different and I think that in this discussion, what we need to do and I saw this very clearly. Susan, Olivia, and I were at the meeting on the measurement of health disparity and it's what is it that we're attempting to achieve when we talk about looking at a disparity.
We haven't defined disparity very well and we haven't defined the context of how we measure disparity. We've talked about it. I think it means that if this group is different from that group, particularly if the ethnic group is different than the White group, but if you really look at the philosophy that underlies Healthy People 2000 or Healthy People 2010, you're going to see it's a little different than that.
We need to think about the issue of is it a difference between the two groups? Is there a target that's been set? There are a lot of issues that are coming up relative to we've collected some data. Roderick is a little concerned because we're about to have a bit of chaos that's going to occur relative to the release of information and what does it mean, how do we use it, what's not good to use?
The exercise that we went through even in terms of trying to come up with what are the statistics to use to measure disparities was very interesting in and of itself. You could see that depending on the size of the group that made a difference, depends on where the group was made a difference.
I think that we could probably bring some guidance to some of this if no more than to shine a light on it. At the end of this process we'll be able to offer some commentary in terms of what we see being done at implementation around what the issues are around the expectation of the public in the collection.
DR. FRIEDMAN: I think those are really excellent ideas, Vickie, and I think, at the risk of having Jim and Olivia try to drown me in the water pitcher there, I think it's important to realize is implementation of the directive for most data systems is still a year and a half away.
It's more or less set for vitals. It's ready to have for Census, but in the broader health statistics world decisions around AIDS haven't been made, decisions around communicable disease haven't been made. Decisions around VMS haven't been made, let alone all the other scores of person-based data collections.
Administrative data sets haven't been made. To the extent that we're seeing now, we're worried that this is just going to be nonsense and chaos. Maybe there is still time to say based upon what we've learned from the 2000 Census so far, maybe we need to take another look at the directive and see if there is another way of doing it before we go ahead and implement it for the rest of the data systems,
DR. STARFIELD: Does anybody think that's possible?
DR. CARTER-POKRAS: After having been through this process for five years and Jim has been following up for the past 3-4, this is a lengthy process. I don't know if you really want to revisit that, but I do offer a side amendment to that.
The provisional guidance that went out was for the entire federal government. When talking to Kathy Wholman she said there was full understanding that the various departments they wanted to go up. There is additional guidance which is more detailed, where provisional guidance gives you choices.
It really doesn't say this is the part that you're going to use for this kind of data system and this is the part you're going to use for that kind of data system. It give you a cafeteria to chose from. An implementation guide for the Department is something to consider and to fine tune what can be done rather than saying look at the standard again because this is the entire federal government. As we saw, Census feeds into our denominators and our sample selection and all this other thing.
DR. FRIEDMAN: I think a really clear implementation guidance even if it were just for CDC. HERSA.
DR. CARTER-POKRAS: We've identified 200 data systems that the Department funds and maintains. What can be done for those data systems would be helpful to talk about and that would focus the discussion. NCHS has done a lot of work in looking at this and using the HIS, but the reason why Census is conducting their own study is they don't want to use HIS. They want to collect their own information.
DR. HARRISON: In part because you have to get down to the actual survey.
DR. CARTER-POKRAS: But the question is will NCHS continue to use HIS as information on preferred rates to make the transition for the bridging or perhaps would we look at the Census data and use that for bridging.
DR. HARRISON: Thinking about bridges is critical and building in bridges as you make whatever implementation change you're going to do, I think if you can build in bridges and you have some good ones, where you can build in bridges, you will avoid some of the problems that we might be encountering now because the bridges were not built into the Census itself.
MR. WEED: Maybe this is a point where I ought to make a comment or two. The first one would be that in using any survey or data system as a source of bridging statistics, you're dealing in almost all cases, with very, very small numbers and with HIS you really are only going to get reasonably good bridging distributions for 3-4 bi-racial groups, two race groups.
The rest of them won't be that stable. When it's that small, you can ignore it in most trend analysis. You have to go over to some split 50/50 or 30/30/30 or something like that. There is another way of handling this that I wanted to mention.
We have made proposals to the Census Bureau that one method for bridging would be some agency like NCHS to contract with the Bureau to take the MARS file which has already got the other race going and for any person that remains in the MARS file, it has more than one race and you go up through the file and you would generate a random number for a person that has one race and a number between 1-100.
If the person is part Black/White as races, using the HIS or other sources, maybe two-thirds of Black/White people, one-third say White. So if you generate a random number. If the number is under 66, you make them Black. If it's over 66, you make them White. So every person gets allocated a single race that's the bridge race using a distribution of preferred races as they appear in HIS or in the special survey the Bureau will do or in vital records, other ways of going at it.
DR. HARRISON: I think that's a reasonable strategy.
MR. WEED: Here's the advantage of that system is that you can then tabulate the 281 million people at the tract level, at the block level, at the county/city, you name it because they all have a single race allocated to them. You solve the problem of geography.
DR. HARRISON: One detail is that ratio number be one that is couchy.
MR. WEED: Once again, small numbers are going to kill you at the county level. I don't think you're going to get at the county level very many people who report more than one race that you can generate what are the characteristics of these people at county.
DR. STARFIELD: You don't even have county data from NCHS data.
DR. HARRISON: If the Census sample were concentrated on counties where there were large percentages reporting multiple races, but you have to concentrate the sample where you need the bridge, then, in fact, a national ratio or state ratio would be perfect for the counties where the multiple.
DR. HARRISON: I agree with you in theory and in practice, we go as far as we can go with the data. I'm saying this in theory and I think you would then need to be honest working out of the sampling between the cause how liable the data gets.
MR. WEED: Obviously, when you get into 3-5 race people, the number of such in any geography is going to so small that you'll probably have to do some kind of equal split, something that people around the table would agree on. Actually, it's going to take a bit of statistical research to pull this off with some kind of interagency consortium to work it out because it would take any one agency that does this.
If we contracted with the Bureau to do that for us, the Bureau would not say they own the data. They would disown that association of those data because they'll say her react is not going to like this kind of bridging. So probably NCHS or some agency that has the contract would then own the data and would be responsible for explaining to the public. Therein, lies the rub.
DR. MAYS: One of the things I think is that we're actually getting into the details of the work we need to do and I think it's clear to me that we do have quite a bit that we could look at and make suggestions about. What I would like to do is to thank our guests. You're free to stay. We're going to move to the next agenda.
MR. SCANLON: Maybe we can call on Rod again when we get into --
DR. MAYS: I'm going to see if we can call on Rod to attend when we have our populations committee whether he might be able since we're here in DC to be here with us when we're talking about some of the very specific issues that are in his bailiwick. He's not off the hook yet.
MR. SCANLON: No, he won't get off that easily.
DR. MAYS: We just want to thank you for taking the time to be with us here today.
DR. CARTER-POKRAS: That was a really interesting paper. Thank you.
DR. MAYS: You're free to stay with us and we hope you will because we're going to move along. If it's on the next item, I'm willing to take it.
DR. CARTER-POKRAS: It is on the next one.
DR. MAYS: Okay. The next item.
DR. CARTER-POKRAS: Just based on the discussions that occurred today, some ideas including some short, short action items that could be considered by the subcommittee for future directions. One is, as I mentioned the July 25th deadline for S-CHIP regs. I don't know if the subcommittee wants to develop any comments regarding that.
DR. MAYS: I was actually moving to the next one, but okay.
DR. CARTER-POKRAS: Okay. The HIPAA business case. The department has developed a business case for data in the electronic transmission guides and the question is whether this particular subcommittee wants to take a look at that because there is going to have to be continuing discussion over the next few years to make sure that actually happens for encounters.
So maybe suggestions for strength in the business case. So that's another suggestion. The implementation guide for the Department was one and the National Academy of Sciences study is going to be coming up and perhaps the subcommittee wants to make some recommendations for either content material that could be used and/or suggestions of people to serve on that panel.
Of course, this NAS is the one that actually makes those decisions, but we can float up some suggestions to them for people to be considered for the panel. This is going to be a review of the Department's data systems. Hopefully, there will be a little bit of input from the Committee.
DR. STARFIELD: Do they have a chair yet?
MR. SCANLON: We're pretty fairly along. Actually, we'll probably be awarding this within the next month, but I think the subcommittee's or the whole committee's recommendations for anyone to serve on that panel, I think we would pass them along to the Academy and it would be help to give them a good pull.
The other thing is we would want to have at least an informal liaison if not a more formal one between the subcommittee and the Academy study. I don't if we can actually have one member, but certainly a liaison between our subcommittee and the Academy's study.
The other thing would be the issues. They're gong to be looking clearly. The Academy studies, once you turn them loose, they can look at whatever they want. That's the benefit and the limitation of the study, but however you want an independent look at all this, but certainly suggestions of areas to look at.
I think one of them for the subcommittee itself would be to take upon itself the idea of monitoring implementation of the standards in our own federal agencies. That could be asking the agencies where they are and what kind of obstacles, if nay, they've encountered and how this may be coming out.
My guess is that for the major surveys, most of them with their most recent revision, have probably included the new standard. For administrative systems, it's really meant to be the next big revision and I'm not sure how many have, but at any rate --
DR. CARTER-POKRAS: The decisions may not have been made about the bridging methods that are going to be used for reports and other things like that and that's where the implementation guide is an idea for the Department that perhaps, the Committee wants to take on or make recommendations. At the Academy we want to establish some sort of a bridge, if you will, between the subcommittee and the Academy study and we can be there.
It could be recommendations for panel members, it also could be background materials that we'd like to make sure that the project officer gets and perhaps once the panel gets up and running, experts that they should be talking to, suggestions for folks to testify to them.
DR. STARFIELD: What is Clara's committee? Is that an official committee?
DR. CARTER-POKRAS: Its within the Centers for Disease Control Prevention. It's a workgroup that she's pulled together. It's not like the data accounts or something like that. It's a workgroup that she's had of people with common interest and it includes folks that are in the federal government as well as outside the federal government.
DR. STARFIELD: It's something she's done?
DR. MAYS: No, she was given a new position that was created and she is the director of the Social Determinants of Health within, I think, Chronic Diseases. What this is for her is a working group. And the working group has several people who are part of the federal system, particularly CDC, and then what she has is that she has extended it to outside the individuals who participate. So, it is considered an official group relative to her branch or her division. It has a name, Measurements Working Research Group, something like that.
MS. GREENBERG: It sounds a little iffy from the point of view of FACA. You're not supposed to have a regular group that you consult with that includes a non-governmental people. It's supposed to be covered by the Federal Advisory Committee Act.
DR. MAYS: They actually physically meet because if you're in Atlanta, you can actually go to the meetings. Let's see what else we want to put on this list because part of why I actually wanted to do structure and direction of the subcommittee is that, as you can see, there are a hundred things we could do.
And it's like I think we need to have a clearer sense of what we have the capacity and what are all the different things that this group wants to do. We had a discussion at the last meeting or the meeting before where they began to talk about what are the things that the population subcommittee is involved in.
There are things like this race/ethnicity. There are things like this population in general. What happens in terms of the structure of how we work both as a group and as we work relative to the other groups. Should things, for example, always start here.
Should things, for example, if it's on a special population, does that mean that it's here in this group or does that mean that we come up with a structure that it cuts cross the groups so that what you have is a population, but different people take content.
It's like I'm more than willing to entertain all the things that we should do, but I also know that both in terms of our size and our ability to be able to do everything and do it well, that is a question. It also is a question in terms of trying to make sure that as we work on issues, that other groups that are working on the specialty part of it, like the privacy, tat privacy has a way to comment on what's going on here and that we have a way to comment with privacy about what we think are special population issues.
So let's entertain anything else that you think we should be doing. This plate is real full right now, but let's put them out there and I think it will help us to see how we want to work.
DR. NEWACHECK: I have thought about strategy or a question about it. We obviously have a lot of things we can do. I wonder if we should try and establish a short term agenda that will get us through, say, a couple of meetings.
And then perhaps put a hold on the big questions of future direction until the new members of this committee or the ones that are cycling off like Barbara and myself and Kathy too, are replaced with new members so that the new subcommittee structure and direction longterm reflects the views of the new members rather than the people that are leaving and, therefore, putting in something that they won't be part of.
The question would be whether there ought to be just a short term set of tasks that we can accomplish in the next six months or something like that and then focus on that and save the questions about the next three years or four years until those new members are brought onto the committee or subcommittee.
DR. MAYS: Let me just comment on the pros and cons on that. One, the retreat is coming up, and this is on the agenda, it was already on the agenda so, to some extent, when we're in the retreat, the executive committee is there on the retreat, I'm assuming unless there is some way in which it's "taken off" and I have a feeling he put it on the agenda. That's one issue.
There is one other thing which is, what is the extent to which we want to have some issues and hope what they can do is select new people for those issues versus having, and I've been in groups where this happens. When you get a new mix of people, they go off in another direction.
It's almost like the model of recruiting people who can help with what some of the issues are versus recruiting people who are generalists and then it's like they are generalists to help, but when they get into the subcommittee, they have other agenda items.
And I guess, I would hope for at least some recruiting relative to some of these big issues and then the rest. If it was to me, if there are four positions, let's take them all for this group, but I know we can't do that.
DR. STARFIELD: You haven't chaired the committee for a long time you need to have some continuity in your work.
MR. SCANLON: One other area that again, the subcommittee may want to play a bigger role in what would be this longterm care research and planing activity that we started in HHS. So far, we've limited to internal discussions pretty much under some research agenda development.
But, I think we would welcome the subcommittee's and obviously full committee's advice on some of that as well. Again, I'm not sure. We could brief you on the framework and where we are and then have the committee react and then maybe have hearings, but I think we would like in HHS, if I could speak generally, would like to be able to use the subcommittee as a sounding board for some population based data issues and initiatives. That happens to be the one that we're trying to pull together at the moment, but there could be others.
The burden of disease and disability, the economic analysis and things like, I think, have always interested -- these questions keep coming up. As we got into the relationships with the WHO report on health system's performance and their annual reports on health status.
We started within HHS the capability of a workgroup and the subcommittee itself may want to serve as that kind of focus for the NCVHS part of this. How are we measuring the global burden of disease and disability now? There clearly are problems there. How do we measure it related to other countries? Are there better ways to approach this and how do our data systems comport with that approach?
I think the Department would only like to use this committee as a sounding board, but then there is the issue of longer term formative, analytic work. I don't know about the timing there, but there is contract support to undertake analysis or have contracts. Those are usually longer term projects.
MS. COLTIN: Another thing to think of is particularly as you're talking about the structure is what to do about the quality workgroup which has really consisted of Lisa, myself, Paul, Barbara, and John I believe. Other than John, we're all rotating off.
First of all, my question is if there's unfinished work. Part of the reasons we've been having all these presentations at the full committee meetings is that interest in the topic was far broader among the membership than simply those who are on the workgroup.
So the workgroup took on the role of planning topics for the full committee and saying, where's what we can do. You all ought to hear about it. That's worked fairly well, but now we need to go back to the mission for that group or the goal that we had laid out which was really to try to address some of the recommendations that were made by the President's Advisory Commission around the data issues to support some of those recommendations. There are a whole set of recommendations about we need more quality measures for vulnerable population groups.
So part of the session we held this morning was looking at, well, what are some of the data issues and trying to get at that and race/ethnicity were one possibility, functional status and how we would measure it, and the work that was done around that was getting at how would you be able to even start to measure quality for certain vulnerable groups.
If you don't have functional status measures, where could you go? Or if you don't race/ethnicity information, where could we go? But there were a whole broad range of sessions that were held focused primarily on what are some of the data limitations and barriers and what would need to be done to really be able to implement a lot of the recommendations that report.
So one of my recommendations would be that if we have some contracting money, to actually have someone go back and organize all of the material that we've collected around those topic areas that were in that report and all of the different sessions and put together a draft report for us to then look at and say, here's what we heard about what the barriers are and what might need to be done to try to implement some of these recommendations we promised to do. Who's going to lead that once I rotate off and the continuity even among the members that have participated goes away. So that's an issue.
DR. MAYS: Let me just ask you a follow-up question. What is specific things other than to put the report together? Tell me what your sense is of the longterm nature of the performance issues as to whether or not we really need a vigilant person with us because they're increasing and it's a very active area?
MS. COLTIN: Secretary Thompson announced that had the direction that now CMS is going to be taking the lead on is onputtingg more information out there about provider level quality measures, measures of hospital quality. Some of the nursing home stuff is already out there, but expanding that.
Home care information and individual physician information and I know that there is a major initiative going on with in CMS and that this will take me a while to get used to seeing this on physician level measures.
There's work that's being done on that topic to do that. So there is going to be a lot of activity around putting it out. There's the national quality report which we're going to hear about tomorrow as well and what's going to be recommended for that report.
So I think there's an awful lot going on around quality measures. And so there were recommendations from the President's Advisory Commission, there's work that's being done not just in terms of what we've been doing in hearings, but at the national quality forum and we'll hear a little bit about that tomorrow. And then there is all this activity that's happening within the Department around reporting to consumers about quality and so I think it's a major area.
DR. NEWACHECK: At the GC what we've done so far from your work is to have really good briefings and to have opportunities to comment ongoing activities. Do you see a different role for the subcommittee in the future?
MS. COLTIN: Well, I think part of what we're hearing were not just briefings, but the topics that I asked people to come and talk about had more to do with obstacles, barriers, difficult challenges so that we could participate a little bit in that and also understand them.
So my sense of what our report would be is really pulling together all of that information about where are the challenges and then also doing what we can to see if we can make some recommendations about how to address those challenges. Right now, it's mostly been identification as opposed to resolution.
MR. HITCHCOCK: I wouldn't want to see the subcommittee get lost in the last Administration. Some of these ideas were generated back then and there's a whole new group here. Our new secretarial initiatives, I don't know that we've mentioned them, but if anyone is interested in certain area, I guess Pal is, prevention is one.
DR. MAYS: Mental heal is a big one. There was a point to make sure that came up.
MR. HITCHCOCK: We really want to be of service to the Secretary as we're supposed to be, then we might want to just review those initiatives and see if there are associated data means, to help the Secretary formulate an address.
MS. GREENBERG: In fact, I think one of the items on the executive subcommittee agenda I believe, there is a lining health information policy with priorities and strategies in the Department. So we definitely need that input.
I'm embarrassed that I work for CDC and I haven't seen it. Maybe the Committee has. Sometimes people on the outside see this before people on the inside. We definitely should bring that the executive subcommittee meeting. Jim, you're going to be there, right?
MR. SCANLON: Yes, but again, that process of transitioning is still going around and it's going to change. I wouldn't start hanging my had on too many things. I think Dale's right. Disparities are not going to go always and healthy people are not going away. They may or may not receive a lot of emphasis. Individual initiatives dealing with those things in the past may not carry on their present form.
The last thing the Committee wants to do is look like it's holding onto incorrect initiatives. These initiatives that Dale's referring to for budget planning are really broad themes. We can certainly talk about those so that anything we do we can characterize as being consistent with them.
I just don't know patient safety, privacy, mental health prevention. They're really broad areas. We'll just have to see. I think what our job will be is fit most of what we do into those. Mental health, that is one of the things. For example, in budget planning for FY03, but what exactly about mental health. There are reimbursement issues.
DR. MAYS: It's also burden of disease. I think some of this mental health is being driven by the WHO and the fact that worldwide if you look at the ten areas, five of them are turning out to be mental health.
DR. STARFIELD: The other issue of morbidity.
MR. SCANLON: I think that would be part of it, but again, those are population issues. They're not so much helathcare.
DR. MAYS: I agree. They're particularly valuative population issues.
MS. COLTIN: It could be morbidity in terms of mental health as well.
MR. SCANLON: That's where it started. That's where the whole concept started with morbidity, mental health, and substance abuse.
MS. GREENBERG: Of course, we do have to recall as our former chair used to remind us that this is the United Nations of populations health. This was three subcommittees. There was a long term care statistics subcommittee. It could have very well dealt with these issues. It was a separate subcommittee.
There was a mental health statistics subcommittee. This is pre-HIPAA and for those of you who don't know this, and there was a subcommittee on minority and special populations or something. These were completely different subcommittees, fully staffed and now it's all in. So it's a challenge.
Nut I wanted to say something about the quality area because I definitley agree with Kathy. This is completely tentative and hasn't been and isn't even going to be discussed exclusively tomorrow, but just to be aware of the fact that, I think it's this report, I'm not sure, envisioning the national health care quality report that recommends that the Department has an advisory mechanism for this quality report.
The question has arisen, where would that advisory mechanism be. Establishing new advisory committees, particularly at this stage, is not probably even feasible if it's desirable. There are some existing advisory committees that might serve this role.
Certainly, I've had some informal discussions with people about whether it might be this advisory committee in some creative ways that that might work or might not work. I think also the patient safety task force. They're looking for some kind of advice.
I think this committee is going to have to, as nearly impossible it is to replace Kathy and as Jim has perhaps told you, we're not in position to replace anybody right now because there's a freeze on all new members to advisory committee nominations.
But we're going to have to have some kind of critical mass of members who are knowledgeable in the area of quality to do the data around quality. That's why I said it's such a challenge. Whenever I call any of the organizations that might be able to name people, they always say, well, how about Kathy Coltin?
I say, yes, I know Kathy has struggled here, but there are some other people and I think that I would hope that there would continue to be at least a quality workgroup. I think it's important to get some sense of whether you feel there should continue to be a quality workgroup because if there isn't going to be one, then that's not even an option that the Committee serve as an advisory.
There are ways that the Committee could serve an advisory mechanism to some of these quality activities without it overwhelming the Committee working with other groups. For example, the subcommittee on standards and security gets all these recommendations from the DSMO process which involves hundreds, thousands of hours by these private sector groups.
Then they bring the recommendations to them and then they go over them and have hearings and then report to the Department. There are ways to do it without having to put huge amounts of resources into it, but I just wanted to share that with you that this is one thing that's being kicked around.
DR. MAYS: Can you talk about why it went from having these really clearly defined separate groups like the minority group to now making us the UN. That may actually help to some extent to try and get a sense of how we got here and why we're here with lots of different issues that come to this group.
MS. GREENBERG: Jim and others could comment on this as well. First of all, we had 16 members. We got two additional so we had 16 at the time that we had these separate subcommittees. We now have 18, but the legislation that gave us 18 also gave us HIPAA, gave us privacy which although privacy and confidentiality were always issues of interest to the Committee, they really did not have a major separate role.
We have like a privacy monitor. Clearly, when HIPAA was passed, we had to have a privacy confidentiality subcommittee so you need at least four people on a subcommittee. You needed that subcommittee. With HIPAA, there was just enormous requirements for reviewing, hearings, and all of that.
There just weren't enough people to go around. It required new types of members, expertise that were not on the Committee before. We used to have the majority of members, half had population based statistics, demography and the more traditional areas of vital and health statistics that the Committee had always covered.
In fact, there was a serious consideration around the time of HIPAA for there to be a new advisory committee developed to address all the HIPAA and standards and privacy areas. Then the national committee would have retained the population based stuff. I will admit that I go strongly against that because it seems like there would just be no connection between the two.
Out of that, there is charter for a Board of Scientific Advisors had approved and populated yet and won't be until the freeze is lifted because the national committee used to give a lot of advice to the NCHS, certainly through its history and even the 20 that I've been with it. And that had reduced dramatically. There just hasn't been the time. It just was a question of not enough people to go around.
DR. STARFIELD: Just to add a tiny bit to that is that there was also a very nice rationale for putting them together that was developed by Kathy and Lisa. I think the underlying rationale was that there were a lot of things in common among the disadvantaged.
MR. SCANLON: The other thing was the population by its very nature that there is an almost infinite number of subdivisions and I don't know unless there are specific tasks to do, I'm not sure that you want to be divided up between committees so that committee members can serve and more than we can staff.
This comes up generally when you're dealing with committees. Is it an issue that you create a separate subcommittee or do you deal with it in a more integrated fashion? I think that's exactly how we can with the population perspective, with other interests in HIPAA, with the idea of making the Committee a national health information policy committee.
I think some sort to focus for integrating on population issues was thought and the idea was that workgroups would be formed in specific statistics and that's how health statistics and NHII and to some extent quality came about.
It depends on what is the agenda, what is the committee being asked to do, and what are people bringing to the committee wants to raise. In a way, we're in a transition. I'm not sure you want to make a decision now about subdividing.
At this point, integrating is probably the better approach. As agenda items become a little clearer, then I think decisions can be made about how do you deal with very specific issues. The issue here is that a lot of other players think they're the main actors in this scene and that the Committee here deals with the data part of it.
The other thing about quality is that it's a moving target. It decides what it is and I think probably the way to deal with that is to do some sort of a workgroup. But until the agenda becomes a little clearer, and we're going to have another summit on healthcare quality and the forum will be holding.
A big part of that will be what do you about information systems? A lot of that has to with the NHII as well. So I'm not sure you want to delve deeply into that, but I think we want to continue the capability. The success is probably picking three things, maybe four, a couple of short term things and then you're thinking of more of an agenda at least for the next six months or so.
DR. MAYS: Might it be a bit premature then for us to even at this retreat to talk about the whole issue of the structure of this group at this time. It seems like with the transition and with the need to see what's going to happen in terms of bringing on new people, could this not be something that could wait?
This didn't come from us. This came to us. The thinking about it coming to us, I put it on the agenda. I've heard a couple of times about this is not necessarily the time. Maybe the discussion has to do with the coordination among us as opposed to any kind of restructuring.
DR. LUMPKIN: I tend to, and maybe it's because I come from Chicago where it's Sullivan who designed the auditorium theater, but anyway his big claim to fame was a quote that he believed in form following function. I strongly believe that and I think in regards to determining what you should do should be the first step before you decide how it should be set out. I think it's timing and the appropriate time to do that sort of visioning first and then talk about how can we best achieve it.
DR. MAYS: I would agree.
MS. GREENBERG: We intended to talk about structure at the retreat. We talked about that a year ago and we had various suggestions.
DR. MAYS: It's my understanding that we were continuing some of that. It was the issue of how does population issues get into other committees like what is the liaison from one to the other. I did understand we were going to do, but that was part of what this was about.
It was also part of the way of putting some of this work into other places and what have you. I'm much more comfortable with, I think it is the way to go to do exactly what we just talked about which is what are the issues, what is the vision that we have.
I think take some now, but at the same time, decide on a couple of long term ones is important both as a seeking people and recruiting tool, but at the same time, in terms of the needing to not plan everything up so that everybody comes in. It's like it's going to be 2-3 years before I get to have a new idea.
DR. FRIEDMAN: That's been a real issue.
DR. MAYS: She just told me. I didn't realize how serious it was.
DR. FRIEDMAN: Coming in and out and lasted on the Committee for six months or a year because their issues weren't being heard or left prematurely. That is a real, serious issue.
DR. CARTER-POKRAS: It was an issue for race/ethnicity populations. The last time we testified to the National Committee was two years ago.
DR. MAYS: The last time you testified to what?
DR. CARTER-POKRAS: To the National Committee was two years ago on these issues.
DR. MAYS: I'm confused. The last time you testified.
DR. CARTER-POKRAS: The National Committee on Vital Health and Statistics was two years.
MS. GREENBERG: What you did today.
DR. CARTER-POKRAS: That's what I'm saying. It's been two years.
DR. MAYS: I get it.
DR. CARTER-POKRAS: It's been two years, two years.
DR. MAYS: I always think of Congress when you testify. I'm sorry. Okay. We're testifying.
MR. EDINGER: With all these executive committee meetings, there might be some clarity about what the Department wants to do.
MR. SCANLON: I hate to invoke the transition, but I think this one is taking a very long time. That's why, Vickie, we'll have a clearer picture of where the Department goes and those who relate to the Department will go in terms of these areas. I think Kathy was alluding to this too.
At the present, the themes are fairly broad and not enough to hang much on. I think by then when the rest of the folks come on board, we'll get a clear picture of what the emphasis may be. I'd hate to see us go out with the anticipation that something is going to be a big deal and it turns out it isn't.
And then there we are, we're wondering what, why, and where did they come up with that. Again, it argues for a tempered approach where we look at issues that are obviously coming up that sort of hold open the agenda as part of this.
DR. LENGERICH: I have a comment and a question about that. I'm leery about making our agenda to mold to fit very broad categories. I think we ought to be specific enough to chart our own course, maybe within a broad category, but just to mold our activities with that.
The second is more the specific part of the Department. That's the Data Council too. I'm wondering if there are issues that are there that we could work with or ones that aren't being picked up.
DR. STARFIELD: I think the longterm care area probably you would be able to bring the other bridge to the research and public health communities to bear there and race/ethnicity is always a big issue internally, but, again, we have to think what about it specifically would we want to focus on.
The other obvious area that again, is one of those issues of what do you do about it is this whole public health data surveillance and data? We're going to hang out hat on NEDS as the panacea which it's unlikely to be.
Maybe we don't even have enough framework to even be in an evaluative kind of setting and maybe we don't have a receptive audience anyway. Here we are a population subcommittee, we're dealing a lot with healthcare and NHII data. We don't seem to be doing a lot on the public health side.
MR. SCANLON: Emphasis is on the infrastructure too that we talked about.
DR. STARFIELD: What about divisioning process?
MR. SCANLON: But what about public health surveillance? Are we happy with that? Do we have a clear answer about where we're going? Does everybody think NEDS is the answer?
DR. MAYS: Stay tuned.
MR. SCANLON: The whole area of public health data which includes the surveys, it includes the surveillance system, it includes the registries, it includes the analytic resources. I just don't know how that works.
DR. MAYS: Let me call on Paul.
DR. NEWACHECK: I'm going to raise a different issue. So if you want to say something about that. I had more of a question about how we go about setting priorities. We've been sitting around the table talking about, well, here's some interesting ideas on which we could provide good advice.
That's how we've done things in the 3-4 years that I've been on the subcommittee that the members have generated ideas based on their interests and that's helpful and useful, but they're not necessarily what somebody in Congress or in the Administration wants.
To me, it seems like what would be much more useful is if we worked more like the National Academy of Sciences or Institute of Medicine where people asked us saying, we really need this information. The Data Council really needs this information to make them in forming a decision or whatever.
Then our reports that we produce had a direct application for somebody who really wanted it rather than us generating something like a report on data needs in Medicaid managed care or the territories that maybe nobody asked for or wants and, therefore, doesn't have the impact that it could if it was something that fit into somebody's broad agenda that could actually make it an actionable item.
I feel like we haven't really done that very well. I think some of the suggestions you raise, Jim, are things that are relevant to some ongoing decision making processes and that I would like to see or I would suggest that if we shifted more in that direction and be more responsive to needs that exit and are actionable and that we could really make a contribution, we'd feel better with our products, we'd be useful and more important.
DR. CARTER-POKRAS: But at the same time, you probably want a mix. Our office wrote the Medicaid Managed Care Report and that was a large reason why we funded the Public Health Foundation and foster and collaborative with public health agencies. That's an important component of that.
DR. MAYS: That's good to hear. So it did influence you.
MR. SCANLON: It's a balance between requested work, contract work, and initiated work, self-initiated.
DR. CARTER-POKRAS: I thought you guys picked that up.
MS. GREENBERG: I thought this is really good that you did this.
DR. NEWACHECK: That, by the way, is how the structure of the National Academy of Sciences works in the sense that they have boards that establish priority areas and attempt to get funding to do some projects.
Other projects come to them from Congress or the Executive Branch. It is a communication and I think it works very well and I think maybe that same model here would work very well.
DR. LUMPKIN: I agree with the prior speakers about the need for balance. Medicaid Managed Care is an example, the NHII discussion which essentially came from this committee. We weren't asked to do it and I think that there's importance in doing those kinds of things where we note that there are gaps in the system.
Gaps include that work that's happening with the 21st century health statistics, issues related to units and measure and granularity of health data. There are some issues that need to be on the table. To the extent that they're being done by other entities, then that's fine. If not, we lean into suggest again.
DR. FRIEDMAN: A couple of points since I got the floor for a couple a seconds. One is in terms of public health surveillance. My impression that public health surveillance datasets in and of themselves, surveillance instead of whatever as statistics or population based data.
Intervention based data sets been something that my impression has been that it's something that the Committee really has not dealt with. Personally, do I think it would be good for CDC to have engaged more of an outside group on an ongoing basis in terms of those, maybe, but I don't think that we're really constituted to provide the public health surveillance as intervention data sets in oversight right now. I think the Committee could be, but we're really sparse. There's Jean and John and there's me who deal with those kinds of issues.
The other thing I just wanted to mention really quickly and I will not belabor it and this is probably a completely inopportune time politically to put this on the agenda is that we have heard and we all know and it was brought up this morning that public health data sets, population based data sets, health statistics datasets, in general, are woefully lacking in measures of economic position.
Generally, what we hear back is the kind of statement which to some extent is true that we heard this morning about, well, it's really hard to measure and it's easier to measure sexual orientation and it's true. You get the same experience.
People get upset if they're asked about their income. They get upset about being asked if you have a gun in the house. Having said that, I think that there are a variety of very specific things that we could do in population health information and ongoing population health information data sets to improve the measurement of economic position. One thing at some point the Committee may want to put on the agenda although it may not have a receptive audience is --
DR. CARTER-POKRAS: The National Academy of Sciences study is supposed to look at not only race/ethnicity, but also socio-economic status.
DR. STARFIELD: Well, we were confused about that this morning because the first recommendation said that, but the third specifically excluded it.
MR. SCANLON: Well, they're going to have their hands full even looking at the race, but let me just reflect on that because there are people in HHS or even our surveys, for example, where we have the most control over the content don't contain enough of the economic and related family resources kind of information.
And, again, they happen to be killing us, but it is a way of putting the health stuff on a broader framework. That's another possibility looking at the adequacy of this whole economic resource area without becoming an economic survey, but that's come up several times.
DR. MAYS: There are ways to do it because it's being done in other places, but it's making a decision as to what we want to know is whether it's economic or you want to know social status. It might be useful to have those discussions particularly as we talk about race and what we expect to learn from the race/ethnicity statistic. I don't think you can learn everything from that. I think it's a real mistake to lay everything that is going to be race/ethnicity specific as much as it's going to be the other.
MS. GREENBERG: I thought it was interesting this morning because this kind of global comment was made about income and education and yet when pressed, in each case, education wasn't nearly the problem that income was. Now that we've conquered functional status, there are two main things in the core data elements that were included, but that nobody really is collecting.
The core data elements were really for administrative data were functional status and education and I think the Department was asked to pursue them and hasn't. That was one of the reasons why the subcommittee then decided to pursue the functional status.
The timing was good because of IXF and everything else and I actually see this report that was approved this morning as a real step towards getting some work done. Telling the Department go pursue this really isn't that helpful. I think there are a lot of really specific recommendations and hopefully some of the agencies will pick up on that.
Education also could be looked at again. There was a lot of interest in this in the Committee about 4-5 years ago and that is different, it's not the same as economic variables, but you're never going to ask people their income on administrative records. Education still might be the best proxy or at least looking at that again.
MR. SCANLON: There's quite a different between administrative records as the source in what you do and our surveys on research and potentially surveillance. You have a lot more leeway in terms of what you can ask and do when you're actually meeting with the individual and asking them these questions.
You're often paying them to participate. Administrative data is a whole other, it's really meant for another purpose and you can't pervert the purpose by adding a lot of other things. You could look at what may be compatible, but this whole area of not just data collection, but analytic work as well in terms of incorporating this broader economic resource perspective.
I don't know how we would actually pursue it because you need a fairly good framework. You need to look at what you're collecting. How would you do it differently and how would you analyze differently? Other than the CDC measure, you'd probably need more than the SCS level.
DR. FRIEDMAN: There is quite a bit of work that's been done recently. Nancy Kreeger did a state-based survey of a core set of public health datasets. There's a lot of work that's being done around small area measurement.
Small area measurement is -- coding. There hasn't been any work as I know about intersensal projection at the small area. I think there is some work the Committee has done that there would be some fairly straight, a few avenues that could be pursued.
DR. MAYS: NIH has actually done some of this because it's been for researchers in an area that they have been concerned about. So they have convened meetings. There was just one. I think it was NICHD. It was very recent within the last 6-8 months.
So part of the issue of bringing things together in which it begins to impact upon the NCHS datasets. But they have funded individuals to look at this. There are recommendations. Reynard's office, for example, has been the source of more recent funded conferences on this.
MR. SCANLON: NIH does the same. In fact, the critics of the NCHS surveys in this regard are often the NIH folks who just have a broader respect.
DR. STARFIELD: I just want to take off on what Dan said. A visioning process is developing among all of the data elements that should be there. Most of them can be collected and there is just a whole lot more literature now than there was five years ago, not only from this country, but from other countries. I think it's a good time.
DR. MAYS: It's not that it's not done. There's actually a lot. That's why when they say, well, we don't know what to use, there has been a lot of discussions about ways to move, but it's a question of whether or not, for example, NCHS can do that and is ready to do that.
DR. LUMPKIN: But I think our role as a committee ought to be more than just trying to generate it. So in the sense of NIH doing the studies, at some point we've got to look at it and say it's time to anoint a methodology or an approach.
Our job is more policy. Now that we've gotten to this point, what is the policy, the national policy ought to be. We think this is important. We think it's now matured. So it's at a point, let's do the hearings because part of the process of hearings is dissemination of information through HHS.
And then if we think that there is a mature measure or approach that ought to be done, then we can make a recommendation to the Secretary that will be the one that's followed. I think that's the approach and very appropriate area for us to do to look at what are the policy implications and cross-cutting issues rather than trying to develop new sets and new measures and so forth.
DR. MAYS: Before we discuss lots of other things, can we go back to some of our lists and decide, for example, what, because there are a couple of short term things that were put out there for us. I'd like to get some sense as to whether or not the group wants to try and address that. Then I think there are some larger ones. Olivia, you talked about July 25th for comment?
DR. CARTER-POKRAS: On the S-CHIP Interim Regulations whether the state committee or the national committee. It's much broader, S-Chip Regs in general.
DR. MAYS: What would be useful, do you think?
MR. HITCHCOCK: The item of concern is not making language preference a required item on S-CHIP reporting. It's something that after Robinsue Frohboese spoke today, she grabbed me in the hall and suggested that I bring before people in this subcommittee that if people held strongly about it, they might want to put together a memo to the Secretary saying as a comment why language preference should be retained as a variable.
MS. GREENBERG: Is race/ethnicity at risk?
MR. HITCHCOCK: No.
MS. GREENBERG: That's apparently back on.
DR. CARTER-POKRAS: It wouldn't hurt if this is of interest to the subcommittee, it wouldn't hurt to put something in the letter commenting that we're pleased to see that it's been retained, something like that because it was very much --
MS. GREENBERG: That could be very short and sweet because if you're going to do anything, you got to do it today and bring it to the Committee tomorrow. Otherwise, we can't do it.
DR. CARTER-POKRAS: I have to say that race/ethnicity really was a question mark whether it was going to be retained. It really was a question mark. So if it's something that the subcommittee would like, then it might be helpful to stick just a sentence in there saying we're very pleased to see that it was retained.
MS. GREENBERG: If there's a comment period and you have a comment.
MR. SCANLON: But you'd almost have to agree on a process for processing the comment.
DR. LUMPKIN: The way to do that would be that we would pass a motion and the motion would be that the National Committee believes that collection of race/ethnicity and primary language is an important component of S-CHIP program and directs the Chair/Executive Committee to send a letter to that effect.
MS. GREENBERG: What are the policy implications of the language?
DR. MAYS: I was just going to say. Let me back up because I think the language issue is much more complicated than race and ethnicity. The question becomes, what are the burden? If it's mandated state, there are some states, as I understand it, do more than what's required and would they now do only what's required? I'm comfortable on a quick basis doing the race/ethnicity. I'm a little less comfortable stepping into the territory of mandating something for the states without knowing some of the pros and cons.
DR. CARTER-POKRAS: Of the states, and unfortunately Yoko had to leave, he was the project officer from the Public Health Foundation. He was kind of waiting just in case.
DR. MAYS: Who was?
DR. CARTER-POKRAS: Yoku was sitting here for a while just in case you had any questions about his project, but they have talked to eight states. One of them we haven't heard back from and that's the State of California unfortunately.
Of the states that they did contact, 6/7 or 5/6 something like that, are collecting information on language. Texas it was a surprise that the Medicaid state agency was not collecting information on language. It was a surprise to us because the Enheld Project which is a separate project fund that it's actually required for HMOs. So we thought that was very curious.
MR. SCANLON: This was a burden issue. You remember that?
DR. CARTER-POKRAS: So as far as the burden issue, of the states that we've contacted, right. Most of them are collecting information on language.
MR. SCANLON: That's 7-8.
DR. MAYS: They do, but some don't collect on all. I think if you talk about the collecting of it, you would have to find out whether or not, for example, let's just say the major populations in a state are African-Americans and Latinos. But there is a very small population of Mung(?), usually they do it by size. The question becomes what it is we're actually requesting? Is it language for everybody or is it by size?
DR. STARFIELD: That's each enrollee, right?
DR. MAYS: If a person is enrolled and that's their language, the requirement is that you would then have to provide things in that language.
DR. STARFIELD: Otherwise, why collet it?
MR. SCANLON: That's the implication.
MS. GREENBERG: You've got to try to accommodate. I guess it's like if you have one person whose disabled, you've got to try to accommodate them.
MS. COLTIN: One of the things that we found and we do collect it on our application forms across the board not just on Medicaid enrollees.
DR. MAYS: That's what I want to know.
DR. STARFIELD: It could be any language in the world. The preferred language.
MS. COLTIN: We code it. But the reason we do it is not because anybody said you must collect it. They said we must do other things which in order to do them, we must collect it.
So I think you have to look through these S-Chip recommendations to see what else is in there as a requirement because there may be something in there that's a requirement that in order to do it, you have to collect language even though it doesn't say.
If it says you must make your enrollment literature available in languages spoken by at least 10 percent of your enrollees, then how are you going to do that if you don't know what they are? So even though it's not explicitly saying collect it, it's forcing you to collect it in order to meet another requirement.
DR. NEWACHECK: Independent of other requirements, it would still be valuable to have that information for assessing whether or not there are adequate numbers of culturally competent providers in the health plan.
MS. COLTIN: It's very useful for things. We use it a lot.
DR. NEWACHECK: I think a lot of people view it as being more valuable than ethnicity. Like Hispanic is not as useful as having language data in order to assess how well it's working.
MS. COLTIN: It's the only way we can reach people, outreach for people to come in or to tell them how to use the system.
DR. MAYS: In S-CHIP are we only talking about the issue of collecting data on the language or are we talking about more than that?
DR. CARTER-POKRAS: There may be other issues that you may have some concerns about because there have been changes from the January version. For example, social security numbers, they're now allowing states to collect information on social security numbers for the applicants.
DR. MAYS: That I don't think we can get through within the next couple of days, but I think we clearly could go in with a motion that would be passed about race/ethnicity. What I'm trying to think about is whether we could go in with a motion that could be passed about language? That's really what stimulated her to want us to discuss it.
MR. HITCHCOCK: She's around civil rights. That's what she's talking about.
DR. MAYS: My question is: Is it that's what's being requested is that we're asking them just to collect this language or is there something bigger than that? I think we may be able to get people to support just the collection of it, but what are the implications of that?
MS. GREENBERG: These regs include what information you need to collect when you're enrolling; is that what this is, enrollment or eligibility data? Is this a piece of a larger reg?
DR. CARTER-POKRAS: Right. The regulations actually --
MR. SCANLON: It's a reporting system actually.
DR. CARTER-POKRAS: Right. The originating legislation said by demographic characteristics which is very vague and these are the details that are now coming out from the Department.
MR. SCANLON: These are the reporting requirements we're talking about now.
MS. GREENBERG: This is the reg that implements the law.
MR. SCANLON: Remember. This is one of those regs that was frozen over the transition for review and apparently the Secretary heard about the tremendous burden that race/ethnicity and language and others from the states of all people was going to impose and that's why it even came up as an option that it would be removed. Now, apparently, as a compromise there is a notion that let's do race/ethnicity, but they may not language.
DR. CARTER-POKRAS: The National Law Program's findings actually, our funded project, was very instrumental in that decision and that's because they found out that the vast majority, 47 states, are already collecting the information. So this is not the burden. The other point was that nobody, no state, no organization representing states even raised this as an issue in the public commentary.
DR. MAYS: If we have this discussion here, imagine if it gets to the full. So what's your recommendation?
DR. STARFIELD: My recommendation is that what I hear in this committee is that this is very useful for health plans to have this information.
DR. MAYS: Which?
DR. STARFIELD: Language is important for the health plan to have it. I don't hear any argument that it's important to be reported because I can't understand any use for reporting of what percentages speak what language. I don't see the policy implications.
But it couldn't it be recommended that this be one of the issues that health plans are measured on quality and that they don't have to report it, but if they collect the information, it becomes a quality issue of cultural competency.
DR. NEWACHECK: Reporting does permit accountability.
DR. STARFIELD: But it's also a burden and it depends on what other burdens you're imposing.
DR. NEWACHECK: But if you're just saying it's voluntary.
DR. STARFIELD: No, I'm not saying it's voluntary. I'm saying that it goes into part of their quality rating. I'd recommend to NCQA that health plans --
MS. GREENBERG: That they collect it as part?
DR. STARFIELD: Yes, as part of their clinical care.
DR. MAYS: It sounds like we can pat them on the back and support them in terms of race/ethnicity, but it sounds like we have to discuss this more in order to do language. You can maybe make a comment that you understand that there is a comment period about language.
We've not had the opportunity to delve into it, but there are some important issues that accompany language and you can point that out and then maybe stop there. That lets them know that there is a relationship of language to particular areas of health quality, but we haven't come out because I don't know that you're going to be able to. How's that?
MR. SCANLON: You really have to acquaint yourself with all the issues on both sides of the equation to be honest and race/ethnicity I don't think it's any need to do it further particularly if the states are collecting it anyway. But I think there could be two sides to that.
DR. MAYS: So are you comfortable with that being a motion tomorrow that we see if we can get the full committee to do that and then we'll work with Olivia and Susan and others to get a letter out after the meeting?
MS. GREENBERG: And the letter is basically to agree with and congratulate the Department for retaining race/ethnicity and would note the value of language although you haven't had time to study this, you can note the value.
DR. MAYS: Exactly.
MR. SCANLON: There will be comments.
DR. MAYS: So how's that?
MR. SCANLON: I think what we will have to do tomorrow would be the process for doing this between now and the next.
MS. GREENBERG: If they would approve that, then the process would just be that we worked out a letter for the Executive Subcommittee.
DR. CARTER-POKRAS: It would be more as a proposal, as a concept rather than have them review a written document tomorrow; is that right?
MR. SCANLON: The nature of the it and the basic thrust that it would be reaffirming.
DR. CARTER-POKRAS: This is the most to get the languages right.
MS. GREENBERG: I think that's responsible because the subcommittee has spent huge amounts of time on race/ethnicity and has not really looked at language.
DR. MAYS: I think our colleagues in full committee would also feel more comfortable with us leaping out on that and maybe a little less on the other. I don't think between now and the 25th we're going to become experts in language. I'm not at least.
MR. SCANLON: I think there are a couple that wouldn't support that.
DR. LUMPKIN: I think it will translate well the way you phrased it for the full committee.
DR. MAYS: I'm going to do a couple of things because we have to do in two minutes, we have to do functional status. Can we do by e-mail this issue of suggestions about the National Academy of Science's panel. We'll send an e-mail out asking if there are particular individuals. We will leave it you all to really work on the issue of what is the status that we can have on it. I informally heard that I think we could have and this person may not know enough for sure, but my contact.
MR. SCANLON: We might and then we'll need a volunteer.
DR. MAYS: Yes, if we could push it, we could potentially get names via e-mail. The issue of monitoring the implementation of the standard, I think that's a bigger thing and that's one of the big issues. I think relative to the introduction that I made earlier about talking about what is the value and the implementation, that should be our big one that we consider working on and that's one that I think we have people that can get started, we can maintain it, we hope to get new people. There are also timing issues. That's one I wouldn't want to put to the side. If we can get comments on some of the implementation for certain departments, we might do well in that. So let's keep that as the big thing.
DR. CARTER-POKRAS: Nobody right now in the Department that I know of is actually developing an implementation guide for the Department.
DR. MAYS: When you say Department, what are you talking about?
DR. CARTER-POKRAS: The Department of Health and Human Services which includes NCHS, all the rest of CDC.
DR. MAYS: I have to get my terminology because I don't think that we can start with doing it at the whole departmental level as much as we may start with certain divisions or entities, agencies.
I think we'll discuss that. What we need to know here is that that's one and it's something that we need to sit down and plan how to do that. The other piece that's on is to talk about the bigger issues that came up today and decide how we want to do that. Because it's race and ethnicity, I think it's just two sides of the same coin and that's the big issue.
DR. LUMPKIN: If, in fact, that statement is true that no one is developing implementation to it.
DR. CARTER-POKRAS: A single implementation guide of the Department. There is provisional guidance that was developed by the OMB that was issued to all the departments in the federal government, but the Department of Health and Human Services hasn't gone the next step which Kathy Wohlman said we could do and that is to develop an implementation guide for the Department that fills in the gaps.
In other words, OMB said you had six options. The Department may say, well, in reality we looked at it and we really only want you to go with one or two options. They might narrow it down somewhat which makes it a whole lot easier for the agencies.
DR. LUMPKIN: What I was going to say was that part of what the committee can do is to doing hearings and inviting the different agencies in to talk about their implementation plans. We can assess whether or not that creates a problem and then that would be the contact stuff for recommendation.
MR. SCANLON: I would, in fact, have the agencies come in and talk about where they are in the implementation and planning, what issues they have encountered or foresee, and if they have any ideas that would benefit from a collective viewpoint. It could be a standard way of doing it and there could be some other things. It may lead to a uniform guidance.
DR. MAYS: We said earlier that today was about the issues and the next is to bring in the department's agencies and have them tell us exactly what they're doing, what they're struggling with, et cetera. I had thought maybe we would have hearings. But I think before going to that, that we ought to have the agencies come in and inform us. Then move to whatever else we're going to do.
MR. SCANLON: Then you have basis for doing what you're doing.
MS. GREENBERG: Also to find out what would be the problems if there were. What are your unique situations? In fact, I don't know, but I think it may be that individual agencies see less of a need for more consistent policy across agencies than the users see.
DR. MAYS: I think that's what you're going to find. That's why this issue of the variance that we had talked about. For some of the agencies, the notion is that's fine, but I'm asking for a variance and then when you stand on the other side as the user and you're like, well, I now can't do this anymore because I can't blend data sets together. I can't go across years.
I agree with you that I think that's what's going to happen. We want them to say that and then we want to hear from what the users are. I think there are enough users around the table that we can put the issues put there as to what it means for the direction that they want to take.
But I can tell you already because I do know that, while it's not one of the Department level, there are guidance that's being written at the agency level and also for particular studies within NCHS. So you want to hear that formally. I just do it more informally.
DR. CARTER-POKRAS: That impacts on the other agencies and that's the reason why there has to be, if there's not a guidance, at least some principles that are followed.
DR. MAYS: I think John's point is well taken. Let's have the hearings and then let us then judge from that, what is the best way to approach it rather than starting at either place because we always want to make it work and we also don't want to tie the hands.
DR. CARTER-POKRAS: That's fine. You had mentioned discussing the value of collecting the data and that's why I brought up the HIPAA business case because I didn't know if you wanted to take a look at that.
DR. MAYS: Let me ask is there any interest in the HIPAA business case? Everybody looks real puzzled.
MS. GREENBERG: We developed a business case. We did get approval. It's my understanding that it will be in the next guide, but then, of course, people can challenge it and I was really happy to see that the work you all are doing because I hope that will be helpful to us in responding to these challenges.
I guess at this point, I don't exactly see what the subcommittee would do other than to be on retainer as this issue comes up to buttress some of the arguments that are being made, but right now, we're on track to having it be in the next version that will be brought forward as a HIPAA standard.
DR. CARTER-POKRAS: That's not the one being implement this October. We're talking a couple of years?
MS. GREENBERG: I think actually it may be around February that they'll be bringing in another version. It won't be in the NPRM that Simon's group asked the Secretary to be expeditiously on. It won't be that because that's still the 40/10 version. But the next version it will be in that's going to be adopted.
DR. CARTER-POKRAS: Isn't that the enrollment fund?
MS. GREENBERG: No, we got it from not used to situational in the 40/10.
DR. MAYS: Can I make a suggestion and that is the HIPAA people, if you see a great need for this committee to get engaged in this, then let them bring it to the populations committee. Other than that, you all have been working on this.
MS. GREENBERG: I think it's the other way around. I think this committee needs to bring it to the HIPAA people because they're not going to bring it to us.
DR. CARTER-POKRAS: I think you have to be really careful. I understand from Bill Brake that this is the kind of thing that right now it looks like it's going to be in the 40/31, but there could be some changes from now to then.
DR. FRIEDMAN: We are watching this. I have to staff who attend all 12 meetings. We're watching this like a hawk. So if its threatened, you'll hear about it.
DR. CARTER-POKRAS: When you say if, there are two ifs to make the 834 situational and you're saying right now that's in.
MS. GREENBERG: The 834 already is situational. The 837 was not used.
DR. CARTER-POKRAS: It's just the 837 we're worried about that somebody might try to take it out of the 834.
MS. GREENBERG: But the 40/10 which is the version that was adopted by the Secretary has situational for the enrollment and not used for the encounter.
DR. KENNEDY: That's a problem if they step backward on what's currently included in their --
MS. GREENBERG: Yes, so that's the HIPAA guide and the next version of the HIPAA guide should make it situational in the 837.
DR. CARTER-POKRAS: Do you know when that's supposed to be implemented, the 4039?
DR. MAYS: I'm going to have to bring this to a close only because I want to make sure that the colleagues who are here to do functional status feel they get their just due. We've given them 15 minutes. So could I just make a suggestion that what we could do is I and how about the two of you meet with Simon who is the Chair for the Subcommittee on Standards and Security where HIPAA is, let's have a discussion with Simon and see if what we could do is have Simon carry this within that committee. They can always come back and consult with this group, but let's ask them to please carry this issue and to make it something where they will work with your staff to make sure they're vigilant in watching. How's that?
MS. GREENBERG: Any change in this process will come to that subcommittee.
DR. CARTER-POKRAS: Do you have an idea when?
DR. MAYS: Tomorrow. We're going to talk to him tomorrow. We're just going to pull him to the side.
DR. CARTER-POKRAS: If you want me here, I just need to plan because I wasn't planning to be down here.
MS. GREENBERG: Is there anybody on this subcommittee who's helpful on longterm care?
DR. MAYS: It depends on what you want.
MS. GREENBERG: I'm asking this on Jim's behalf. I do think it's related to functional status.
DR. MAYS: Who is it that wants to bring up functional status issues? Marjorie is this item for you?
MS. GREENBERG: The reason it's on the agenda is and actually I was concerned there wasn't enough time, but it turns out there's more time than we need. If the full committee had raised these issues with the report, then this would have been needed to repair the report so that it could get approved tomorrow. We will work with staff and Paul on a transmittal letter; is that okay? If we can work with the two of you on a transmittal letter with Susan and Paul. Our transmittal letters are short and sweet on the report, then we can get it off to the Secretary in the next few weeks and that would be great. It will be signed by John.
DR. MAYS: People can't say we work on things and it doesn't make an impact. We'll get it up and it will make an impact.
MS. GREENBERG: The only thing I would say is that I would hope this subcommittee would monitor as it says that it will in the report, that is the Department following up on any of these recommendations.
DR. MAYS: Our subcommittee or the Standards and Security?
MS. GREENBERG: The full committee, the executive subcommittee. I think you need to think about maybe this could be discussed at the executive subcommittee meeting, but if it's everybody's responsibility, it's nobody's. I do think monitoring it will be important because what you've done now is you've picked up some recommendations, but they need to be picked up.
DR. MAYS: I think part of what we need is like as we go through the meetings and then afterwards to see not only what the action item is, but things that we're given to do so that each time we meet, we have a list of those things. These are little things. The work plan tells us big things. Little things like did we check the HIPAA thing.
What I want to make sure of is that I know what the load is and that as we keep agreeing, I want people to know what's before them in terms of the things they've agreed to and then the new things they take on. If we're going to do what John is saying which is making sure that we work across some of the groups that having this stuff in front of our faces is often very helpful. Like that monitoring, I would share it with another group, but maybe I don't understand the structure yet.
DR. KENNEDY: I was going to put up one specific thing which is that we ended up putting a sentence about the committee would welcome annual status reports from the Department beginning in 2002. So that's a fairly specific milestone on that.
DR. MAYS: Okay. So they'll send us a report and then that will really make sure.
MS. GREENBERG: It could be an oral presentation.
DR. MAYS: That's good.
MS. GREENBERG: It was in the report. Was anything else in the functional status report? I don't think so. I think we're in good shape.
DR. MAYS: Jim, you get the last few minutes to tell us about longterm care.
MR. SCANLON: Well, I think this would start probably with a briefing for the subcommittee, but it would probably be at the next subcommittee meeting and then I think the committee would want to see what it may want to do. I think the problem is we don't have a longterm care area on the subcommittee and we'd have to see at what point is it something that we couldn't do without getting other expertise in or is it something that we already have the capability for?
DR. STARFIELD: What are the issues that the Data Council have?
MR. SCANLON: On longterm care there are about half a dozen surveys and administrative data systems that you could classify as basically dealing with functional status, limitation of activity and longterm care.
DR. STARFIELD: So it's functional status.
MR. SCANLON: These are different than that. This is collecting data in surveys and administrative on IADLs, ASLs, on the older population in the community that may have limitations, the children who have limitations.
Some of these are not only population data issues, they're community population. There are some others too. It includes facilities too though and that's the thing. I realize that that's a special area, but it attempts to include the entire longterm care population.
It's like race/ethnicity, that includes everybody too. But that's the focus. It would be how do we make the best out of our data systems for getting the information to help with planning and research in longterm care.
MS. COLTIN: How are they defining longterm care? We have had testimony on this topic and when we had people come in from HCFA and we had people from of the outside consulting firms that were doing work on the contract for HCFA about this, it was showing that large percentages of the population that went into longterm care facilities, had short term stays and a lot of them were out in under 30 days. Is that longterm care because it was a longterm care facility or what defines longterm care?
DR. STARFIELD: It's continual care. That's why we did that.
MR. SCANLON: It's not like other areas. It's not limited to a particular stetting. You're right. It's a long and lot of data showing that people go into nursing homes and longterm care settings.
There's the issue of people in the community starting out functioning and then transitioning to other settings or to home health or to other settings as well. But, again, that's where we're heading in terms of this group and it's pretty clear that the working group on longterm care data, there will be plans coming out in terms of how to look at the surveys, whether to do them or not, how to augment MEPS or MCBS.
How to augment them in terms of the right samples? How do you get a picture of the older or elderly who are living not in nursing homes, but in other types of facilities which we really don't have? We had a board and care survey at one point. We don't really know about that care.
I think Barbara is right. This is not a setting based definition. This is a population based definition. It includes children, it includes adults who may have limitations that includes elderly who may be living in the community or in residential settings.
It includes those who may be living in assisted living as well. I think this is fairly wide open. I think we decided in HHS that it was really time to step back and take a broad view.
DR. MAYS: The suggestion I would make then is we talked about being able to do things in terms of balancing our portfolio with also things that need to come to us. This is not a short term thing. This is a bigger time and we should decide whether we want to commit to it as a bigger item.
I would suggest that we do that as one of the things in which we know there is a need and we're trying to be responsible and that then because it may also require that as you think about new members has some expertise in this area. So that would then put us with our two big issues and then some of the smaller issues and I want to know if people seem amenable to that.
MR. SCANLON: I think you could start out on a scalable basis. We could start with the briefing and see how far people want to go. It's going to be around for a while.
DR. NEWACHECK: I feel very strongly this is a very weak area of data knowledge. We really have to be getting this information on the institutionalized population and the longterm care system and we really could do a much better job than we're going.
Whether we're up to doing that ourselves on this committee that is helping that process. Maybe it could end of being a short term thing where we write a supportive letter about this initiative and the importance of it or whatever and that's all we do because we don't feel that we have the capacity to do more or maybe because a second major area that was worked into. I think having that briefing would be very helpful.
DR. STARFIELD: What we can contribute is the conceptualization. It doesn't have to be a very longterm commitment. He might want to get members on the committee who are experts in it, but if we don't know what it is.
MR. SCANLON: To be honest, we had trouble with it as well.
MS. GREENBERG: I have spent the better years of my life trying to recruit people in this area. It's very difficult. Most of the experts are on soft money and they won't come on this committee.
DR. MAYS: I didn't know that because I was thinking of someone at RAND who would be excellent.
MS. GREENBERG: I would certainly recommend if you're not already doing it that the Data Council group and the, and I'm happy to facilitate this, and this group look at the reports that this committee has done in the past on longterm care data issues. The committee has done some substantive reports. I can make those available to you.
MS. COLTIN: Even the work we did and the letters that we sent around OASIS and MDS. We take people from one setting to another because they're referenced.
MS. GREENBERG: We referenced that.
MR. SCANLON: This is not going to help. I think the only thing that's going to help in that area, Kathy, is that's almost a standardization issue and it's going to be a longer-term issue. We actually have another project at HHS that is looking at the next generation of functional status reporting and how do you mesh those which is even a longer term.
But that could be something too that the group might want to become. We have had trouble though with the long when we tried to get experts to serve on the committee, we haven't always been that successful and even when we have members other than Jim who served for a long time. We didn't have much luck with e-mailing.
DR. MAYS: Here's a suggestion then for the next meeting that what we could do is we have hearings, we have all the material that this group has worked on in the past year and that we can decide at the end of that both a cover letter to send forth that pat material and then to make decisions about what we're going to do in the future, whether we're going to take it on or not take it on. We'll send the material to the Data Council as well as to try and let them know if there are other things we're going to do.
MS. COLTIN: And I would suggest that we accord the same process to the topic of mental health and substance abuse. We talked about that before also as being a major topic area. If we're going to make a decision about where to work, we ought to hear about them both and where could we make the best contribution. Maybe it's in the long term care area. Maybe it's not.
DR. MAYS: That sounds like a plan. Ceil Kennedy left me a whole slew of notes and there are some very specific issues in terms of measurement and what have you. We're a bit over. There are only two other things. One is, if you could talk with, Marjorie and Jim, about the finishing up the performance, the quality.
MS. GREENBERG: Getting a contract on that?
DR. MAYS: Exactly. To see if that's possible. She brought that up. I think that that would be great to be able to at least finish that and to have you involved in the finishing. You can never go. And then you can determine exactly whether it's something in terms of the next meeting or what have you.
Then I think the other thing is to remind people that we have a reception. We're all going to try to go to the reception and then you're free for dinner after that, but I think part of the reception. There's just one piece of homework for this group and that is in your packets. If you would please read "Improving the Collection and Use of Race/Ethnic Data in the HHS.
MS. GREENBERG: Tonight?
DR. MAYS: No, it's like we like need to have some foundation here. So this is like homework that's in the packet for you. If you don't want to take it home, this is on the Web site, but we really need to have some basis by which we have some equal levels of knowledge and move on from there in terms of that. So, please, read this. Thank you to everybody. Thank you to the staff for getting everything here and getting us moving along. I appreciate all your contributions also.
DR. CARTER-POKRAS: I have a quick question, our staff expected to attend the retreat. I can't attend. It's the day I couldn't attend.
DR. MAYS: I'm not the person to ask that.
MS. GREENBERG: I'll be there and Debbie will be there.
DR. MAYS: It's the 14th.
MS. GREENBERG: We go in the 13th, have dinner and then.
DR. MAYS: So go ye, folks, and have drinks and thank you.
(The session was concluded at 5:13pm.)