[This Transcript is Unedited]
Hubert H. Humphrey Building
200 Independence Avenue
Washington, D.C.
DR. MAYS: Let's get started, because I think we have a quorum. If you have plans in terms of getting out for dinner, we can do it relative for adjourning. Even though we are running late, maybe we can just talk faster and try to keep to our time.
Let's talk about the issue of -- you can look at the agenda, and we will talk about the issue of the hearing. Do we want to go around and do the hellos and introduction? I think everybody in here knows each other, but just to be on the safe side.
DR. QUEEN: I am Susan Queen, lead staff.
DR. NEWACHECK: Paul Newacheck.
MS. COLTIN: Kathy Coltin.
MR. HITCHCOCK: Bill Hitchcock, staff.
DR. KENNEDY: Cille Kennedy, staff.
DR. FRIEDMAN: Dan Friedman.
MR. LENGERICH: Jay Lengerich.
DR. MAYS: And I am Vickie Mays.
Agenda Item: Preparation for Hearings on Race/Ethnicity.
DR. MAYS: I want to bring us up to date on where we are with the issue of this hearing, because I am a little frustrated, and this is going to be a different working session than it was before. I have given you some notes, and I will try to give you some background as to what has occurred.
The population group had a call in which part of what we talked about was getting prepared for the hearings. The issue was that we were initially scheduled -- it must have been the September meeting, when we didn't have the meeting. At that point in time, what our goal was, was to bring some of our colleagues in from the federal agencies. They would talk to us as kind of a follow up to the initial letter that we sent to Catherine Wolman.
In that letter, what we raised was that we wanted to know a bit about if people were seeking variances. So, our first question to our colleagues would be what data they were collecting and what they were doing with the data, particularly in terms of if they were collecting data in terms of multiple race. We wanted to know if there were barriers or problems that they would be experiencing in terms of the collection of that, and some of the implications of being able to use the data, particularly if they were able to use the multiple race data.
The bottom line of what happened was, we canceled that meeting. So, we were trying to see if we could get them back for November. We didn't have enough time at this meeting because, as you can tell, we just had the two hours. So, the decision was that, let's just have a hearing at which we can have a full day and a half, which will allow us, instead of doing each piece of first we bring in the federal data sets that are population based and next we bring in some of the administrative data and next we bring in some of the individuals in the field that are data users, that we will try to do all of this in one day.
We do have a date and that date is February 11-12. The committee was polled and that is the date which works for everyone. I had a call with the staff on the 8th. It was determined that we would start at 9:00 on the 11th and go until 5:00. On the second day we would start again at 9:00 and we would end around 1:00. I can't remember exactly on the ending day. So, that is kind of where we were up until the 8th when I got a call. Some of you may have gotten a bit confused because it was sent out to everyone that we were having a call, and actually it was just a call for us to get organized for the meeting today.
On the call was myself, Susan, Gracie, Debbie and I had asked Olivia to also be involved. When we raised what the issues were that we wanted to talk about, which are the ones that I just talked about, Olivia let us know that, I guess in relation to working with the data council -- I guess this is where I am going to have to ask the two of you to probably help a little bit more -- that a survey had been sent to several of the federal agencies already. If you look in your packet, it is the three questions.
Olivia, working with the data council, facilitated the three questions being sent to several agencies, and I will tell you the ones that I am aware of, but I have responses from several others. You all go to Data Council. Maybe you could talk about the background and what it is that Data Council wants to know.
What I am trying to do is not kind of reinvent the wheel here and not have people coming in and we are going to ask them the same thing. It would probably be useful for us to understand what Data Council is asking for, and what its deadline in for this coming back, and what they intend to do with it.
MR. HITCHCOCK: I would be happy to. This is something actually that Jim Scanlon, who sort of is the executive secretary of the Data Council, asked for on behalf of the Data Council. He was a little concerned that there were surveys out there that were not now compliant with the OMB guidelines for data collection. There were some being planned, I think most notably by CDC, that would not be compliant with OMB guidelines.
He asked Olivia's group, which is the Data Council's working group on racial and ethnic data, to sort of go through its usual data sources -- they call them data managers sometimes -- at the agencies that conduct probably the dozen or so major departmental surveys, to check with those surveys to see how they were collecting the racial and ethnic data now and how they would be collecting it in the near future or to meet the deadline of January 2003.
This was actually done by Jim probably back in May or June or something, and the results have just been kind of dribbling in. At this point, the other day it sounded like we had a little over half of what we need from the agencies.
DR. QUEEN: I wouldn't even call it a survey so much. We never got a list of questions. At the meeting it was, please provide an agency update on where your agency stands with its most important data collection implements.
MR. HITCHCOCK: That is what Jim had in mind. He wanted to see the original questions, a xerox copy of the questions.
DR. MAYS: What I have is the e mails that were sent to each of these groups that I will talk about, and they actually had the three questions in it.
Many individuals responded by putting something underneath each of the three questions. I think you all asked for this -- from the e mails, it looks like it was sent out in around June and they are still coming in.
I mean, I have some that are like Monday, October 1. I have some that are September 24. I have some that were very diligent and they are back in June that they responded. So, if what you have now is really only half, then there is a lot more to come in.
MR. HITCHCOCK: Jim was getting concerned. What he was saying is that there was no action whatsoever going on, which wasn't quite true. People were dawdling and I don't really know why. It is a simple thing.
DR. MAYS: I think that we had Jennifer, Jorge and Roderick Harrison, and that was back in June, and it looks like this fired up kind of around that time also, to get these responses in.
DR. FRIEDMAN: Just double checking, the effort was confined to surveys as opposed to surveillance systems, registries?
DR. MAYS: I am going to give you the list of everything that we have, and then you are going to see that it, I think, is really broad.
That is why I kind of don't want to do what we had initially said we were going to do. I want to get a sense of when the rest of the information is kind of due in, or whether or not somebody is going to try to get it in. That should really be the basis for our work.
Do you have a sense of a time frame for when this is all due back?
DR. HITCHCOCK: It sounded, at our last meeting, that Olivia and Sheila were pushing to get it in. Jim was saying, limit to 12 or 20. I think it is going to be mostly surveys, because the registries are not under our control all that much, necessarily.
DR. QUEEN: Actually, I think the information that I provided from HSRA was not on surveys. It was the block grant. It was just the major data systems.
DR. MAYS: Let me walk through what I have and then I will walk through my notes, unless you have another question. Then that will give you a sense of what is in. Then if either of you know what else is coming in, that would be great. Then we can go to look at who we have on board and whether it still makes sense to kind of take the approach that we can take.
The responses that I have -- this is a packet that I got on Tuesday. So, I didn't actually start looking at it until it came Fedex Tuesday. I looked a bit Tuesday night and then read most of this Tuesday, on my way here. We have a response from the National Nursing Home Survey. We have a response from the National Hospital Discharge Survey. We have a response from NHANES.
We have a response from the National Immunization Survey. We have a response from HRSA. We have a response from NHIS. We have a response for the Agency for Health Care Research and Quality, but it is only on MEPS. So, they detailed out MEPS.
This one, it says ACF. When I go through it, the first one is ACF, the second one is called the Child Care Information System. Within this is also what is known as the Adoption and Foster Care Analysis and Reporting System.
MR. HITCHCOCK: That is all ACF. They tend to give you more than we might want.
DR. MAYS: Okay. What is this last one, TANR?
MR. HITCHCOCK: That is TANF.
DR. MAYS: And TANF stands for?
MR. HITCHCOCK: Temporary assistance to needy families, the old welfare, the old AFDC.
DR. MAYS: I have, Dan, mortality and natality. I have a response from that. That would have come from the National Vital Statistics System. They had mortality as Jim Weed, and then the national vital statistics system for natality as Stephanie Ventura. There is one response to this. I don't know who exactly sent it back.
We have a response from the National Survey of Family Growth. We have a response, a little strange, but I guess okay, from NIH, because it is more on investigator data. There is a little bit in the back about the ways in which investigators were requested to report race and ethnicity of the subjects that participate, so there is something on that.
Then the next piece that I have, which is this, and there are things that I will definitely -- I know this group now, you like things. This is definitely something that I will make sure you have copies of. I have written all over mine. I will make sure that you get it. It is called Race and Ethnicity: Implementing the Office of Management and Budget Policy Directive No. 15 and NCCDPHP surveillance system.
Let me tell you what comes under that in terms of the various systems. So, in here they have system programs for the behavioral risk factors surveillance system, the national diabetes surveillance system, the national oral health surveillance system, the national pregnancy and mortality surveillance system, the national program of cancer registries, the pediatric nutrition surveillance system, the pregnancy and nutrition surveillance systems, pregnancy risk assessment monitoring system, the youth risk behavior surveillance system, and the youth tobacco survey.
Actually, this is probably the most organized and it is really interesting if we could get information similar to this on the others. It actually tells you quite a bit about, for example, is this data, data that the person has reported, is it extrapolated.
They ask whether or not, for example, they are going to combine it, not combine it, they are clear about whether it is multiple race. Clearly, a lot of work went into putting this document together.
MR. HITCHCOCK: Do you know who did that?
DR. MAYS: Diane Rowley and Dr. Noreen Keenan. Dr. Diane Rowley who is the associate director for science and Dr. Noreen Keenan did the summary. The summary report was designed and developed by Timothy J. Carney in collaboration with Jane Gillilan and Amy Zlott.
MR. HITCHCOCK: They are all CDC folks.
MR. LENGERICH: That is the chronic disease center.
DR. MAYS: They have a data source diagram in here for surveillance. It helps you understand like where the data come from. So, there are a lot of ideas to be gained from this. They give you the questionnaire that they sent. It asks clearly what the questions are, what the format is, whether it is separate, whether it is combined, whether or not they are in compliance with the OMB direction, are they going to use the categories. Are they going to use the other category. They put in parentheses, not recommended by OMB. Will you provide the ability to indicate ethnic or racial subcategories. For example, under Asian, could you do Korean or Japanese.
It really goes through and asks a lot of the types of questions we would want to know. For those that are gathering administrative data, what you will see here is that they use what the data system is, and then they talk about who all the partners are that they have to get that data from. Then they go through and they talk about whether or not there is a problem with using those particular partners in terms of getting the data.
They give you the coding. They ask when it is going to be implemented. When do you anticipate implementing the new standard on race and ethnicity. You can see who is in 2000, 2001, 2002 and who is pending. This is just a system profile. So, they actually go through and for each one they have the set of questions. To some extent, that is why I wanted to find out what else you all were going to do in Data Council and figure out if maybe what we should do is try to compile something similar to this as the first start.
I think our colleagues in some of these agencies are answering these questions. It may be just a matter of asking some of them a bit more formally. As I walked through this, you really begin to see what issues are probably going to come up. I think that would be a better place to start a hearing from, given that they have shared this information with us.
My sense at this point is, I don't think we really need to have people come in and tell us what variable they included, et cetera, because they are doing that for Data Council.
DR. NEWACHECK: So, Vickie, what would be the purpose of doing the extended inventory, like if we did this with the other surveys?
DR. MAYS: I think first of all we will find out -- one of the things we needed to know is whether or not people are able to collect the data. In each instance, what you can see is that it is a lot easier in the surveys but a lot harder in terms of administrative data.
What is clear, when you start to look through these inventories is, what kind of guidance is needed, where the barriers are. I think you get a better sense of, with the partners, what it would take to change.
We focus, I think, at the national level. What you will see, as we go through this, is that quite often it is the states, and the pressure that needs to be brought to bear on the states on whether or not it is possible. I think that is going to be a big chunk of this. The administrative data, as much as we are concerned about it, sometimes it has to do with, can we get others to be able to deliver the type of data that is needed.
DR. NEWACHECK: What kinds of recommendations are you talking about?
DR. MAYS: I will give you another report. You have this, actually, in your packets. This is something else that Olivia made me aware of that was just released by the Commonwealth in 2001.
There are several recommendations, if you go in -- as much of the report as I have read, and truly I had to read it quickly, there are some things in here that I think are more complicated than the people who did the report -- I am not sure the people who did the report are actually really data users, as much as like a group that goes out and does reports and they interview people. So, some of it is a little more complicated.
For example, if we walk through this report, you will get a sense of some of the recommendations that are possibilities. There is the issue of uniformity. That has been raised before. Some people are on this side of it, some aren't, but the issue of can HHS come up with some uniformity.
There is another recommendation that probably could arise, and that is, to some extent, the reason that some of the ethnic group data is not used is because of the size. The question becomes at what point, if you are using it over multiple years, let's get some sense of what a recommendation might be about how you might be able to use this data, and a set of conditions under which it is really clear that you can.
There seem to be other possibilities, I think, if you are combining years of data, to be able to use it without violating the disclosure rules. What else can I think of off the top of my head might be recommendations? I think you might also get a sense of -- one of the groups that I am concerned about is the Native Americans.
I don't have a sense at all if we ever will be able to use their data. At the same time, when you talk to individuals in those communities, it is very clear that they are in need of data. When you have a group that has such small numbers, what are we going to do? I think at some point we need to try to take a look at what can we do to facilitate groups that have small numbers being able to get information.
I don't know whether you have secure data sites, like the census data, when you have sensitive data you can go to the data site and use it --
DR. NEWACHECK: Most of them do have them, like MEPS and the health interview survey and other surveys. You can do that already.
DR. MAYS: In terms of for the racial ethnic groups?
DR. NEWACHECK: Yes.
DR. MAYS: Again, I don't know. Those may be the kinds of things. You somewhat caught me off guard, because I just got all this stuff and I am reading as much of it as I could, but wanting to at least walk through what I have been able to ascertain so far.
DR. NEWACHECK: Just to add to my comment, the reason I was asking, it seems to me that a report that focuses on data collection and presentation, seems to me like -- this might sound like heresy -- but it is sort of boring.
It would be much nicer if we could do something that is proactive and would focus on disparities, which is ultimately the reason why we are doing all this anyway, and to somehow either perhaps set some sort of agenda toward understanding disparities better and use data to understand disparities or do our own analysis or something like that.
I know that is sort of stretching our role, but if it is something that would be a little bit more ambitious that would go a little bit beyond the data side of it per se would be much more interesting.
DR. QUEEN: When I was speaking about the potential presenters, I knew that a lot of them would be collecting their data in very similar fashions, and a lot of what they could speak to was how their particular surveys -- this is what we were talking about for the meeting would be presenting information on how their surveys could be analyzed using race and ethnicity, in the light of the types of data their surveys collect.
DR. MAYS: I was suggesting the report or pulling the information as the basis to determine questions we would use even for the next hearing. I think that some of this information has been collected by Data Council. What it would allow us to do is exactly what you are saying, is to go beyond just here is the data.
Even with the individuals we have coming in, the hope would be that they actually could do some analysis that would show us differences between kind of the old use of the data, the new use of the data, what they are doing to be able to bridge to data in the past. I guess for me it is like, I am going to be a skeptic about this and say, now that we collect the data in this way, what does it really tell us, that allows us to improve the health status, the health care and the health policies for racial and ethnic minorities.
In a funny kind of way, I think it is a big wish list of, we collected it and the people out there now wish that we would be able to do something with it. I am not convinced that we are going to be able to deliver what the public thinks that we should be able to deliver.
Why? First of all, the scientific data keeps coming out and saying that race alone is not enough, and I would hope -- this is just my personal thing -- that by the time we finish, we identify what some of the gaps are in terms of health statistics for race and ethnic groups that would help us in the various things I talked about, better knowledge about health status, health care and health policies. I think that when you ask a person to do some of the data manipulations, what you will see is that they will tell you sometimes that, well, I also need to use socioeconomic status. I am better off if I have either geocoding or neighborhood data. That is where I think we will then get to disparities.
I agree with you. I think this other would be like an exercise that is not very fulfilling, but I think it is a step toward getting toward the direction we want to go. I know on the call, when I introduced the notion of disparities it was like, well, we haven't heard that before. I was like, well, I am looking at this and if I were to say, well, where is it that we want to get to, that, to me, would be the ultimate question of, in collecting this data, how does it allow us to be able to do those things.
DR. NEWACHECK: There are a couple of points that I think are embedded in some of the points that you made that I think are really important. One is that the revised federal standards, aka OMB 15, with the exception of multiple race, really doesn't add anything.
The second thing that Vickie sort of intimated that, with me, is a real sore point and a real sore point with CDC, is that one of the things that is happening with some of the federal data systems in how they are adopting the census questions, is that there is this confusion of what I think of as race and what I think of as ethnicity. With the census question, the only ethnicities that exist are you are Hispanic and there are Hispanic subgroups. If you are Brazilian, that is not the same.
If you are, I don't know, Polish, if you are from Bosnia, that is not an ethnicity, and there are assumptions built into the question that those are races, just like Armenians are a race, according to census. Someone who uses these data extensively for programmatic purposes, I think it is a huge waste of effort and it also puts us back, frankly, 10 or 15 years from where we should be. I think that would be something that would be valuable, frankly, to focus on.
MR. HITCHCOCK: Those are just minimum standards.
DR. NEWACHECK: The ethnicity questions in census are embedded in the race question, with the exception of Hispanic.
MR. HITCHCOCK: Couldn't you ask any data question you wanted? You are talking about a census data user, I guess.
DR. NEWACHECK: I am talking about somebody who is a data collector. For example, the new vitals questions that mirror census, what we are told is, oh, no, Brazilians are a race, or Bosnians are a race. It has to be embedded in the race question.
DR. MAYS: Here is what I think he is saying is happening. You are getting guidance, and the guidance that you are given comes from the basis of what has occurred in census. Yes, you are told it is a minimum, but most people take the minimum to be in the race question and they are not thinking through -- and not everyone has the diversity that we have in places like Massachusetts or California or something like that.
What they are thinking through is like, when you look at the race questions, they will have a lot of categories. Some people would argue that some of the categories that are put under race really should be under ethnicity. I think that is where, in the scientific field right now, there are debates going back and forth, and even saying that you are misclassifying individuals under race, and that it is really an ethnic group.
I think there are people who are really trying to do well with putting some of the people there, but again, I think the issues are not necessarily all out on the table about the definition of race and ethnicity, whether everybody has ethnicity and we don't ask it, we only ask certain groups. There are interesting issues. I think David Williams was talking about, when you are asking black Americans, we assume that if you ask black of African American, that that takes care of everything in terms of race. Yet, there are groups that are put there in terms of race that he and others would argue should be under ethnicity.
DR. NEWACHECK: It makes a big difference. We have done research on that. When you compare, for example, people who self identify as Jamaicans versus people who self identify as African Americans, that makes a huge difference when you look at infant outcomes.
DR. MAYS: Foreign born and U.S. born and what happens after you come here and become citizens and all like that. Again, it is interesting because, in the field, there is data, but I don't know if there is a policy voice that is behind some of these results.
You, in terms of the world that you occupy professionally, see this, but I don't know that it is discussed to the extent that it is having an impact, even as we think through, even as we talk about what is a real minimum here. That, I think, is the big issues. That is another one of those issues that it would help to get on the table. What is helpful is to be able to look and see how people are collecting it, to then have a broader discussion.
MR. LENGERICH: Following up on Paul's comment about what recommendations might be made, and also second or other purposes for doing this. Would we be making recommendations about what additional SES or other sorts of variables these surveys should be collecting to explain and identify the disparities in population health?
DR. MAYS: Let me put it this way. I would put that on the table. It is a place that I would like to go but that is a lot more work than the first. Then you don't just have a hearing in which the person only talks about race. It gets more complicated. You have to ask, what are the other sets of variables that are helpful in understanding health outcomes, particularly when there are disparities.
Then you get into things like SES is just one, in my opinion. You also get into things like age distributions and how they differ in racial and ethnic groups, and how they might be more critical in some groups than in others, and that you have to make sure that you then have that in these data sets. You also get into arguments about the difference between socioeconomic and social status. We already know that, you start asking people income, they don't want to answer, particularly on federal data sets.
There are a number of things. You could get into asking about neighborhood. It is almost like a lot of things that you talk about in your work group that you are currently trying to look at, or are issues that you would just put on the table. That could be complicated. I think if the group wants to have a comment on disparities, we really need as a group to decide we are going to tackle the bigger picture.
It is a more difficult one, but it is a very valuable one, I think, in terms of having the discussion there. How much we would be able to change, I don't know. I think we would be able to have an impact maybe on the issue of race or maybe on the issue of SES.
Beyond that, what I think we would be doing is giving people advice and guidance about, if they are trying to achieve a certain outcome, that these are other variables that they should try to include, and they may have to do that in terms of geocoding. I think if you are going into it with the expectation that you are going to get all these other questions -- I am not trying to be pessimistic, I am just trying to think of cost -- but if you think you are going to get all these other questions out of the federal data sets, I don't think we will be successful at that.
I think we could be successful about having people think better about how to analyze data, and what is necessary in that analysis to come out with a clear statement about a disparity.
DR. FRIEDMAN: I think just reminding people that place of birth and language preference have big impacts on health outcomes would be really important, even if it is just, hey, don't forget about place of birth, because people who are born in the United States often have worse health outcomes than people of the same race or ethnicity who are born outside of the States.
There are dozens of variables that are correlated with race and ethnicity that can make another correlation with health outcomes. So, I mean, to really do it right, I think this is why you are saying it is so complicated. There are probably hundreds. There are individual variables, neighborhood level variables, community level variables, system level variables, all kinds of stuff.
I do think that maybe a contribution we could make would be to put together some kind of conceptual approach to thinking about how you look at disparities. Some people have done this already. I think we can draw on other people's work, to show that this is not a simple thing, that now we have got these OMB categories, so everything is solved. Rather, it is a much more complicated question, if you want to understand what is really going on.
DR. MAYS: I agree, and I agree with your statement that it could get into lots. I think, to some extent, you just want to make people aware of it. I don't think that we could like actually have hearings or whatever on all of those. Instead, we would need to confine ourselves and think through what are some of the bigger ones, and that there is also data already there to help illustrate the case.
MS. COLTIN: When we were having our meeting in association with the executive committee meeting in Chicago, we were supposed to hear from, I think it was Carolyn Clancy and someone else from AHRQ about a national report on disparities. We did hear about the national quality report, and the fact that they were coming to us and asking us actually to serve in an advisory role to AHRQ on the national quality report.
Our anticipation was that we were going to hear something similar with respect to the report on disparities. Where does that stand? It seems to me that, whatever we are talking about doing here ought to somehow relate to that, and be done in a way that would benefit whatever they are trying to do with that report.
If they could identify issues that they would like us to hold hearings on, and perspectives that we need to identify and compile and synthesize and make recommendations around, they would be a customer. I am concerned about having a customer for what it is that we are doing. That is why I am asking the question about where that stands.
DR. MAYS: I will comment just a little bit on it, and then I am going to turn it to Stan. I, too, wanted to try to get them into the mix for a couple of reasons. One, we need to know what they want from us, and to make sure that, as we thought about what our work load was, that they were included.
Secondly, as I brought up the notion of disparity before, indeed, if they were here at the table and being partners with us, they do have a piece of this done, because I did see Carolyn's presentation when we were presenting at the IOM. I am going to ask Stan to comment, and then I am going to make another group that I think is a partner in this that we have to think about.
DR. EDINGER: I actually spoke to Carolyn last week, because it was unclear to me whether I wanted to present at this meeting or a later one. I think she spoke to you as well. What Carolyn told me was essentially they would probably be in a better position to talk with them because they have the IOM information, some other meetings they were having.
They would like to come in February and present and discuss what role they think you could play involved with the agency. They are still interested. Carolyn said to say she was sorry about this delay, but they were trying to get their own ducks in order, and probably would like to do it in February.
DR. MAYS: I want to take your customer issue, because it is something also that I worry about, which is, if we start using the term disparity, there are lots of people right now who are working on this. For example, I didn't know the Commonwealth was. You can see they have practically done what the Data Council is doing, which is, they have gone through and interviewed some of the federal agencies and they are coming up with a set of recommendations.
The National Academy, they should be almost finished, I think, with the -- I don't know whether it is a panel or a study group or whatever, but the working group that was looking at the issue of health care and discrimination and the data needs in terms of that, because I actually reviewed the data collection chapter for them. We have them pretty soon, I think, coming out with a final report.
There is a new group that Jim talked about today, that that will start in, I guess, the next couple of months in which they actually are going to be looking at the data statistics in terms of racial and ethnic groups. We are in a topic where there are a lot of people. It really, in my opinion, requires that we step back and do some coordination.
If we know that the IOM report is about to come out, let's not go down that path, unless we think there are some problems with the report. If we know that Carolyn is working on piece A, then let's work with her, to the extent that we can have that partnership, and then also not do this on our own. One of the things I became aware of, in terms of when Olivia was on the phone, was the Data Council was doing this, the National Academy of Sciences is doing something, the Agency for Health Care Quality is doing something.
MS. COLTIN: The National Quality Forum has been doing something on measuring quality for racial and ethnic groups, and making recommendations about what the data issues are in being able to assess quality of care.
DR. NEWACHECK: There are a lot of individual researchers in this area because there has been funding from several places.
DR. MAYS: Ken Keppel(?), we got the e mail recently, and that was the meeting we went to, in which he is now, based on the recommendations of that meeting, he is going to move ahead and actually try to do a handbook or guidebook on how to analyze data about racial and ethnic groups to determine if you have a disparity. He is actually talking about statistics, what particular statistics to use and when you use particular models. He said, well, Healthy people 2010 is going to be faced with determining whether or not they have made a difference.
In a funny kind of way, you have to ask which is an experiment and which is experience. There may be other times when, depending on the size of the group, et cetera, to move the group a small amount may actually be a tremendous contribution. Again, you need some guidance in terms of what you are looking at, in terms of whether it is effect or all these other things. So, that group is also going to do it.
I just want to put all this on the table. I don't want to see us going down a path where we are wasting our time. I do think that the initial path that I saw us going down, at this point, I think is not worth substantial energy because it is already being done, and that we need to just work with people like the Data Council to finish this and to see --
DR. QUEEN: I do want to let you know that what is being collected for the Data Council isn't nearly, I think, as extensive as what you probably are interested in getting from the presenters, whether or not you decide to go down that road or not. The Data Council request is a very simple, show us the exact questions you are asking. Are you in compliance. If not, when will you be. It was much more of a straightforward update, I thought, for each agency to provide to the Data Council, rather than any sort of analytic uses or conceptual issues, et cetera.
DR. MAYS: The question is, can you ask those questions, similar to the way that the CDC manual did. Now that you have this, can you ask those additional questions, or would it be of value for us to ask those additional questions. What is the plan.
MR. HITCHCOCK: You can ask, but you have seen how long it has taken us to get this stuff.
DR. QUEEN: That is the benefit of holding hearings. You invite them to come and you give them a set of questions to respond to, and you collect it in that context.
DR. NEWACHECK: That doesn't mean they actually respond to those questions. They might do their dog and pony show and not really talk about them.
DR. MAYS: Those of you who have held hearings, please, let's get these things out on the table.
MS. COLTIN: We get to ask whatever we want to ask after the dog and pony show.
DR. MAYS: So, in essence, we can kind of get this information.
DR. NEWACHECK: It seems to me that what we need to find, if we are going to do something in this area, that there has to be our little niche that is protected territory that no one else is doing, for one, that is interesting to us. If it is just simply doing some inventory, that doesn't seem very interesting. Then, that there is a client or customer who wants it.
If all those three things aren't met, then it is not going to be a very useful project. It is hard to sort of see what that would be exactly, what would meet all three of those.
DR. MAYS: I think that if you say what could we do that others aren't doing, to some extent, I am a little surprised by the Commonwealth, but I think it really is trying to understand, from the data sets and also in terms of vital statistics, whether or not we actually can say something significant about the health of racial and ethnic groups.
I think other people are looking at the broader issues. We are looking at, these are the systems that are put into place by the Federal Government, or these are the systems that are funded by the Federal Government, because there are some other ones that are funded that I think we should have on the table.
The question is, what kind of guidance is necessary to ensure that we are going to get the right information to determine if there are really disparities. I think that is different from what even some of the researchers are doing. Researchers are telling you more about the variables for disparities. I think what we are talking about is the system in which a lot of the major systems are made, and whether or not those systems now, in terms of taking a look at what researchers do, can integrate or have integrated or should take a different approach to the way they ask or use those questions.
DR. NEWACHECK: So, there might be a set of criteria applied to different data systems to see if they are up to being able to inform us about disparities? For example, adequate sample size for small ethnic racial groups, the power of analysis?
DR. MAYS: It might be, for example, you could say that -- again, this is just off the top of my head -- but you could look at the fact that most of our data systems tend, for racial and ethnic groups, to only collect data on non-institutionalized populations. If you look at what does that mean in terms of institutionalized populations, there is a significant portion of the population that may cluster in the poorer health, greater need for health care delivery that we are not asking questions of.
Sometimes we say that in terms of the number of young men that might be in incarcerated settings from the age of about 16 to 20 something. They come out into the community and we are often lacking data. We haven't planned well because they are not in a lot of our big data collection.
DR. NEWACHECK: That would be a different way of focusing the hearings, too. Maybe we would be asking them to come and talk about, do you have adequate numbers in these smaller categories to do good analytic work, or can you combine numbers to produce that, when we need minimum sample size, for example. Do you have sufficient data on confounding variables and other measures of SES that allow you to control for that, when you are doing disparity analysis. So, it might be a different way of conducting the hearings, if we were to take that approach.
DR. MAYS: Some of the questions that we sometimes deal with, at least for me as a user is, I go in and I try and look at who is actually in the data set, and how much weight is one individual -- often, you know, when you don't have large numbers, what happens is that you will have, say, one male who is at this age who is weighted for like 15 people.
DR. QUEEN: Sometimes a lot more than 15.
DR. MAYS: I am trying to be nice. Let's say they are weighted in terms of some huge number then. You have to ask yourself sometimes, whose voice didn't I hear in this particular data.
If I don't hear their voice, if I am responsible for health care planning, am I going to have a lot of unexpected things that I am unaware of because I have used this particular data set, and this particular data set was really steering me to spend my money and to develop my programs in this way, and yet I have people in this group -- I have done a lot of this in HIV, this group has just come out of prison and they have these needs.
This group actually had these particular kinds of health diseases, but they weren't captured. They were captured in another whole data set. When they come into the community, these are immediate needs in terms of planning. It is just things like that, that I think might be our niche.
MS. COLTIN: When you started out, you talked about the use of these data in three different buckets, evaluating health care, health policy. Just looking quickly at some of the information that, you know, based on your notes to the replies and all, some of the surveys tell you a lot about health but very little about health care, and some of the data sources tell you a lot about health care, but practically nothing about health, other than perhaps morbidity.
Just quickly looking at these, the ones that tell you about health care seem to be the ones that are worse off in terms of race ethnicity data. It is the administrative data sets and it is like I am looking at the national hospital discharge survey and the national nursing home survey, where the numbers are too small to report anything.
The public use data sets, if they have white, black and other or not previously reported, that is the best they are able to do. They don't even mention the national ambulatory medical care survey, which has smaller sample sizes than the national hospital discharge survey. So, I imagine it is even worse there.
It seems like if we were going to look for an area where there may not be as much attention being focused right now, or as much going on, it might be around the ability to say much at all about health care from the data sources that are currently available in terms of race and ethnicity. It is a little different focus from some of the other documents. It is cutting it this way as opposed to this way.
DR. FRIEDMAN: Some of the population based data on health care do have the data like the health interview survey and MEPS and the NIS, for example. They have more extensive categories. It is more the facility-based surveys that don't have it, because they are relying on different data sets that don't necessarily allow you to collect those details.
DR. MAYS: I think we are going to hear from the National Academy in that area. That was one of the panels that Congress asked them to look at. I think you are probably going to see them come out and say that they want more discussion even about discrimination in terms of the health care encounter. I remember Carolyn, in her presentation, the group that you all funded was called SEED, in which they are located at various university facilities, and they are actually collecting data and doing secondary data analysis on health care encounters?
Again, that is one of our partners. If I had to say where could we make the biggest impact, or where is the biggest impact to be made, it is probably going to be administrative data. If you read kind of the Commonwealth report, part of what they want is someone to come up with kind of some way to kind of demand that states and facilities in which health care encounters occur are pushed to collect this data in ways in which it can be used.
MS. COLTIN: In that case, it would be instructive to even go back to testimony we have already heard on this topic. We have had at least two or three over the past five years that I have been on the committee, two or three fairly long panel sessions debating these issues around collecting race and ethnicity data in administrative transactions, and just taking a look at what the issues are and why it didn't go anywhere.
DR. MAYS: It is interesting. One of the things I read in preparation for this meeting was the 50th anniversary report. I suddenly said, I have a much better sense of what is going on. Recycling what the issues were in the other committee with the different name.
I had the same kind of sense of, well, this is not new, what we are here talking about, but what are the barriers to having things go forth. I don't know if it is money. I don't know if it is administration. I couldn't figure it out, because all I had was that report.
MS. COLTIN: There isn't a convergence of opinion on demand for this. My interpretation of what I heard at the panels is that, no matter what stakeholder group you heard from, they were divided. It wasn't as if it was this stakeholder group against that stakeholder group.
DR. MAYS: Why are states against it? That is what I didn't understand. Why are states against the collection of some of this data?
DR. FRIEDMAN: Right now, I can only speak for my state.
DR. MAYS: Your state is too progressive.
DR. FRIEDMAN: Our argument is the reverse. Our problem is that we are not getting a lot of help in collecting the kind of data that we need.
DR. MAYS: Help from CDC?
DR. FRIEDMAN: Yes, the standards are being interpreted so rigidly. Instead of saying, oh, we need to be able to provide the data in a format that is required by the revised standards, it is being interpreted so rigidly that we are having problems. Let me just mention something else that I think might be helpful in terms of making sure that what we have is a customer.
At the June meeting, we heard from several people discussing it. Olivia was very pointed about what she thought would be helpful. It might be useful to sort of informally help with her and a few other people about what they think would be helpful from us.
MR. LENGERICH: A comment, just going back, I am not sure if it is a matter of being progressive or regressive. I think it is a matter of some other pressures, too. When I was in North Carolina, the administrative data that I thought about was our hospital discharge data. I don't know if that is typical or not.
During my tenure, that was farmed out, that was contracted out, because that was administrative data, and the health department saw it that way and saw that it was -- to outsource it was much less expensive for them to do, because it was seen as administrative. It wasn't seen as health data. I don't know how typical that is, but I just think that those pressures are going to be even more real upon states, with the pressures to down size, to outsource, to have it be specific to the needs that it was set up for, which was not health monitoring and health tracking.
I don't think of that as being progressive, per se. I think that is an experience of some of the pressures that they had. Is it the states that we want to make the recommendations to, or is it the federal systems? I guess I was thinking about the federal systems, instead of the states.
DR. MAYS: I think for some of it, the feds. If the feds put into place that the data has to be in a certain format, then some of the states would have to respond. There is the other side, which is the states have certain data that the feds fund them to do, but they need additional help, I guess, or additional funds or something like that, to do more than the minimum.
Then it becomes, well, where are the funds to do more than the minimum. More than the minimum means a little more time, a little more in terms of analysis. For some data sets, it is almost like, at the national level, there are some data sets where a couple of questions are like $75,000. They are expensive.
DR. NEWACHECK: It is like birth certificates and death certificates. There has to be some incentive to do it.
MR. HITCHCOCK: It is almost like we have to follow a HIPAA sort of model now, where those items have to be developed by consensus between all the possible major users of those data. The department is very reluctant to mandate the collection of anything these days. We saw what happened with the CMS reg and the Medicaid managed care organizations.
As I understand it, the latest NPRM, they want states to furnish plans and enrollment data that show racial and ethnic characteristics from each individual. Yet, they require nothing back from the plans back to the states about access and utilization or any measures like that. They are afraid to cross over that line and mandate that sort of thing. It is difficult.
DR. MAYS: It is like the data is there, but in terms of it being used for any kind of evaluation or planning, it is not being required in terms of that next step.
MR. HITCHCOCK: Almost everyone would like to collect better data for states, better data on race and ethnicity, up the sample size in order to do that sort of analysis, but it is a real funding problem.
The states that have the data, it is very rare to see a report where they have combined a couple of years. Extra money has to be pumped in, extra staff has to be pumped in. It is not easy, unfortunately. We have a group of individuals that we have asked to be on hold for February. We haven't gotten to them yet about the specific date.
Let's go through who they are and then, after we do that, let's come to a decision about what we want to do about February 11 and 12. It is so you know who it is that we had on before and who possibly we will hear from, and then to build around that if we are going to go ahead, and then to figure out if we want a different set of questions for these individuals than we were going to ask before.
DR. QUEEN: A couple of people weren't able to get back to me. One was Jackie Lucas. I think you are pretty familiar with her in terms of the HIS. She probably would be a speaker that we would want to have. She was just unable to get back to me with her sort of main areas of expertise. The person for BRFSS I never spoke with either, but we e mailed back and forth, and she didn't give me information either. Her name is Deborah Holzman.
I don't know her either, but Marjorie Greenberg had given me Gail Janes' name and Gail Janes had left BRFSS by the time were getting ready for this. She said that Deborah is acting chief right now of the branch that conducts the BRFSS, so she would be the person.
She has already communicated back to me that she would be willing to speak, and if not herself, then someone else. It looks like we might be having Carolyn Clancy for the MEPS, that we were talking about before, that she would be the person perhaps to speak on that survey.
The others are Randy Curtain(?) at NIS. He is the major math staff for HANES. Areas of expertise are biostatistics and demography. He has been the chief of the statistical methods branch, the office of research and methodology, he was the acting director. He was the acting director of vital statistics at NCHS.
He is right now working NHANES and on the HANES survey. He has also had responsibility for projects, for overseeing the questionnaire design research lab, working on questionnaire design, cognition and survey measurement issues, working on probability designs for a lot of the household surveys at NCHS, particularly regarding sampling and weighting, non-response adjustments and estimation.
He also worked with OMB to develop that guidance on bridging. So, he was involved with all the other agencies in the OMB work group. He has been a statistical consultant to CDC and HHS on a number of statistical and survey design issues. He is well acquainted with the HANES.
For the CAPS -- that is the consumer assessment of health plans, that is AHRQ, Charles Darby, Chuck Darby is the person I spoke to, to present on that survey.
DR. NEWACHECK: That is not really a survey. That is a bunch of questions. I am not sure that really fits what we are talking about.
DR. QUEEN: That came up as one that the subcommittee seemed to want.
DR. NEWACHECK: It is being used in HEDIS, for example, and it has been funded through federal money, but it is really a set of survey questions. It is not a survey itself.
MS. COLTIN: I tend to disagree with that. There is a core survey and then there are optional modules to it. When you go to say, what does the survey instrument look like, when it is being used by different groups, it can look different because they use different modules.
The core survey questions are identical for everyone, and the questions we are talking about are part of the core.
DR. NEWACHECK: But CAPS is just a set of questions. It is not a real survey. All the other things we are talking about are actual surveys that are going around and collecting data. CAPS is a questionnaire, basically, and people can choose to use all of it or part of it in different venues. Some of the questions are used in MEPS, some are used in the health interview survey, but it is not an independent survey.
It is sort of like saying, here is the national health survey questionnaire. That is not really a good point. It is what data are you actually collecting.
MS. COLTIN: In health plans, it is a set instrument that is being implemented all around the country.
DR. NEWACHECK: If you go outside the federal data sets, then definitely. We would want HEDIS. We would want to know, what is HEDIS using in the 450 health plans around the country for race and ethnicity.
MS. COLTIN: I think you would want more than that. CAPS 2.0H is the version of CAPS that is used as part of HEDIS. There is Medicare CAPS that is being administered to -- the sample size for Medicare CAPS dwarfs the sample size for commercial CAPS in all the health plans, and that is national. That is being done by CMS. They pay for it. They administer it, just like they do the MCBS.
The Medicaid CAPS is pretty well set across states, but some states do take some of the optional modules that others don't.
Again, it is core and then there is a certain set of questions beyond core that all the states pretty much use and then there are questions that go beyond that, that are very variable. Some states use them, some don't. They have looked at that, the Association of State Medicaid Directors. They have collected information on what the states are using and there is some information about how they are using just the core, how many are using interpretive questions.
DR. NEWACHECK: Our concern is race and ethnicity.
MS. COLTIN: Those are part of the core.
DR. NEWACHECK: The CAPS is focused mostly on consumer satisfaction and perspectives on their health care. I don't know if most states or health plans use a standardized set of race and ethnicity categories or not. Do we know that?
MS. COLTIN: Within CAPS, they are defined. We use their questions. You have to. If you are doing CAPS, the core is set. Your choices are what is outside of that. Otherwise, you are doing your own survey and you are borrowing questions from CAPS. If you are doing the CAPS survey, then you are doing the core plus optional modules.
DR. MAYS: I think at this point, part of this when we discussed this initially was to try and get several of the data collections in that have race and ethnicity, particularly if it is going to give us health care encounters or experiences. Given that CAPS has a significant -- I remember now the discussion -- I think when you are talking CAPS itself, it is a significant number, that we really could find out.
That is again like one of those places where the private sector is more likely to utilize that data set. That is one of the data sets you want to find out, because that is what is being used, I think the core, combined with people adding other modules to it. I think from policy impact, it is probably a good one, because I think the industry is probably using it more than just the feds. I think that was part of the discussion.
DR. QUEEN: The person I have been in touch with is the co-project officer for CAPS, Chuck Darby. He has also been involved in work with WHO in developing a survey similar to CAPS to be able to be used in a large number of countries to provide data for the World Health report. The National Survey of Family Growth, I don't know who provided the information back to the Data Council. The person that I have been in touch with was Joyce Abt(?).
She is a demographer. Her main area of expertise is adolescent reproductive health, and she has been involved with questions on demographic characteristics for a number of years on the national survey of family growth. She could provide years and years -- they have been using the question in ways that OMB has wanted people to use the question in their surveys for years. So, they have been in compliance before they were supposed to be. The last person I had down was Dan Waldo, who Olivia actually mentioned that we might want to have more than one person from what is called CMS now.
DR. MAYS: Because there were several studies.
DR. QUEEN: She was suggesting to have more than one person. He is the director of the information and methods group in their office of strategic planning. He has been working on that survey, he said, for many years, more years than he wanted to remember. He would be probably one of the people we might have presenting in addition to some other names that Olivia had recommended.
MS. COLTIN: Probably we also want to hear about the health outcomes survey, that Medicare survey, the HOS, the Medicare Health Outcomes Survey.
MR. HITCHCOCK: I can throw a couple other possibilities out of topic areas. One is that we are missing the whole substance abuse, mental health side here. Another one is, I don't see anything from the provider's side.
DR. MAYS: Before, we have only a couple of hours. Now we have a day and a half. That is why we can actually expand it. That is why I talked about, there are population based surveys, there are vital statistics and there are administrative data. I think we may want to try to cluster things. Then there are the data users. We may want to cluster things in that way and see if we can't group it. I would like to get recommendations today, as well as also in e mail, so you can go back and think about it.
MR. HITCHCOCK: There is a huge longitudinal survey coming down the pike and Paul probably knows more about this that NIH is co-sponsoring with other federal agencies. It is still in planning, though.
DR. MAYS: That is good. Even if they don't have something to say, we invite them to attend for the day. Susan Newcomer(?) is pretty good. I think it would be very well to invite her.
MR. HITCHCOCK: This is the time we can have some influence.
DR. NEWACHECK: There is that whole set of children's surveys that the National Center for Health Statistics is doing. The state and local area integrated telephone survey has three surveys, the national immunization survey, the survey of children with special health care needs, and the national survey of children's health.
DR. MAYS: I think what Dale is referring to is the one at NIH, with NIAHD. This sounds like this is something out of NCHS. Is it still in the development stage?
DR. NEWACHECK: Well, two of them are in the field right now, and one of them is under development. Steven Blumberg would probably be the person.
DR. MAYS: Here is what I am going to suggest. Let's throw out as many names as possible. Let us look at them and make some grouping, and then see what makes sense under these categories.
I also will e mail people and ask you to think about this, and see if we can't set this up on these four groups. Let's kind of spend just a few minutes with names and then go and say, what is the bigger picture we want to talk with them about, because that is what we are writing the questions for.
DR. EDINGER: One thing you might want to check with Carolyn, usually the MEPS, Steve Cohen does it because basically he is in charge of the MEPS group there. You might want to find out if she wants to do it. I think Carolyn, from what I understand, was talking more about the broader picture of disparities. You might want to check which area.
DR. QUEEN: I actually contacted Steve first. Then, during the conference call, Olivia was suggesting that he probably wouldn't be the one to speak, but Carolyn Clancy would be.
DR. MAYS: I think what we are getting down to is, people know the survey, but who knows the race and ethnicity stuff.
I was just going to say, what Olivia went through was a set of names of individuals that have been the contact for the Data Council working group who they have asked other questions of, and she thought this was probably right up their alley, as opposed to the person who is coming in and can tell you about the survey and may even present some things they have been handed by somebody else, but if we ask too many questions, they are going to kind of hit the wall a little bit. I think that is what we were getting from Olivia.
Administrative data sets, which ones are you interested in?
MS. COLTIN: How are you defining administrative data sets? Are you lumping the provider surveys in that category or are you talking about the transactions?
DR. MAYS: What I was thinking about are those data sets -- I was doing it more broadly, those data sets in which we find race and ethnicity based on someone's either doing it by observation, records, et cetera. I think that is going to take a totally different kind of discussion than when you are actually doing a population-based survey.
DR. FRIEDMAN: We may want to lump in with that some of the surveillance and registry data sets. Typically the data collection means are essentially observation. The national cancer registry and some of the infectious disease data sets, in public health, while we don't typically classify them as administrative, in fact, the data sources are exactly the same. They don't ask what is the race or ethnicity. It is whatever is in the chart.
DR. NEWACHECK: It depends if they are talking about enrollment or claims.
MR. HITCHCOCK: It sounds like the push it is to collect it more and more at enrollment.
DR. MAYS: I think you see more and more recommendations going to that. I think there are some in which that is not the case. Again, what we are trying to do is --
MS. COLTIN: You might check with Marjorie on that one. That is the area where we had lots of testimony, on the 834 and 837, the 834 being the enrollment, the 837 being the claim encounter, and where there was difficulty getting consensus. What people are doing now doesn't really matter because, October 16, they are going to be doing the 834 and the 837. So, what matters is what is in those, and what is the status of each of those data elements in each of those data sets at present.
Are there any activities going on to modify those data sets with respect to those data elements in particular. I know there were some proposals, like it was too late to get them in for the first implementation guide, but I know HHS and some others were advocating for trying to get something in for the next version. So, I just don't know where things stand. That is really where you want to focus on those kinds of data sets.
DR. MAYS: It sounds like part of what we should do is go back and see what we have also, in terms of all these other hearings, and then to see if anything about that is moot. If not, let us use that and not do that again. I think that is probably important for us to find out. We have to dig up this past testimony and stuff like that. It is probably by topic as opposed to other things.
Are we going to take on these broader issues in this hearing on February 11 as well, other than just asking about race, but instead, race and ethnicity in terms of the data collected and, instead, ask about the question of disparities.
MS. COLTIN: Under the broad heading of disparities, isn't what you want to get at what the users want to know?
All of what you have got listed is about what is being collected as opposed to what are the questions that people want to get answers to.
Clearly, disparities is a good umbrella for these kinds of questions, but I am not sure that is exactly where the National Quality Forum is headed, for instance, in looking at what do we want to know when we measure quality of care. It is as much quality improvement as a comparative kind of exercise.
You know, there are multiple uses for the information. There are targeting opportunities in thinking about strategies, using the data in that context, which isn't necessarily a disparities context, and yet, it is a user that needs this information.
DR. MAYS: I agree. I think we are going to have to settle on like what the major questions are and have a sense those questions fit. I have thrown out lots of ideas, but I want to see exactly what we want to settle on. I think Susan will tell you her experience is that when we call people and ask them, what they want to know is, do you have a set of questions you want us to answer. I think once we have gotten beyond this, it is almost like, let's try and nail down the questions.
DR. NEWACHECK: So, we need an umbrella, whether it is disparities or something else. I think it depends on whether we have a customer or client who wants to know whatever. We can take different ways of organizing it depending on what a customer wanted or a client wanted.
If we pick disparities, then it seems to me that -- that is kind of where we started, I think -- if we picked that, we would want to know whether the data sets are adequate to address issues of determining whether disparities exist and the context of those disparities. Those would be sort of the central questions. Then we could drill down and say, then you need to know whether you have adequate sample sizes to have statistical power or if you are able to control for potential confounding variables. We try to assess the role of race and ethnicity and other factors in health outcomes or health care outcomes, and there are probably a bunch of questions we can ask if we are going to pursue that.
MR. LENGERICH: What is Healthy People 2010, that being one of the goals to reduce those, there has been some discussion about measurement that would be using many of these surveys.
DR. QUEEN: There are a lot of data unavailable for a lot of the objectives.
MR. LENGERICH: Is that where they are stopping?
DR. QUEEN: I don't know. I don't work on it.
MR. LENGERICH: I think if we are making a list, that would be useful to have represented there.
DR. MAYS: That is probably why Ken Koppel is trying to do this statistical guide, is so they have some idea of how to approach the disparities question. I think the issue of how many racial and ethnic groups they will be able to come up with where the disparity is different, it still may turn out there is black and white and they still can't say much about the other populations because they just don't have the numbers.
MR. LENGERICH: There is a second question they have to deal with that I don't think we do, and that is the change over time. That will complicate their analysis, but at least they can tell us how they are doing the measurement of the disparities between different race and ethnicities.
DR. QUEEN: I got this from NCHS, it is a recent publication on methodological issues. It is about better rates in population estimates using the OMB guidelines. What it is, it is sort of just the results of a workshop where they talk about all the work that needs to be done, rather than giving any specific guidance, which I thought is what it was actually going to do.
MR. LENGERICH: You had asked the question for making it broader or narrower, and I would vote for narrower. I guess I have a difficult time being more specific than that. I think that things that would be very helpful would be for me to read this and read the Chronic Disease Center's report, because it sounds like that is very clear, at least very organized. Maybe that would help highlight some of the questions, the more specific questions that you would want to have answered.
DR. MAYS: Suppose we do this, because I feel like I have just gotten tons of information and some of it you haven't gotten. Suppose what I do is I put together a packet, and in the packet, what I will give you is definitely these reports, because I think they are getting the reports. I think this is on the web site, so we can even give you -- they xeroxed it, you have gotten copies of it already.
I would give you also -- this is on the web site -- I am going to send you URLs for this. This is, Improving the Collection and Use of Race and Ethnic Data in HHS. This is the report that came from the Data Council and the data work group initiative of HHS to eliminate racial and ethnic disparities in health. That is December 1999. This, I will talk with Olivia about how much of this. I kind of did a synthesis of some of it. I got through probably about half, and I need to talk with Olivia to find out where the rest of this is.
Then let's schedule a conference call. Could we do a conference call in early December? I was trying to decide today whether or not we would need to use the couple of hours that are there for December 12, because everyone is in except for me. Everyone is here for the quality hearing. I will come in, and let's take those two hours on December 12. It is 11:00 to 1:00, I think, is the suggestion because then you start your hearings at 1:30, and then that gives people time to get in.
Let's try to have this hammered out by then. So, let's do some e mail back and forth. I will send some information out. I will pull some things together and I will talk to Olivia and also to Jim and to Marjorie. Then we will also work to see what the things are that we already have done and try to eliminate those. Is that enough of a plan for people?
So, we will have a call the very beginning of December. We can check in and have some very preliminary things by then, and then come into the meeting. That call is to polish off what we need to work on for the meeting on December 12.
DR. QUEEN: I need to know who you want me to talk to.
DR. MAYS: I am going to talk to Olivia and then we should know.
MR. LENGERICH: This is a question I think we could put on a list for a few people, not for everybody. I think it would be really interesting to ask some of these folks who were responsible for individual data sets, what is race, what is ethnicity and why they collect it, just to see what kind of responses.
DR. MAYS: Do you have specific ones in mind?
DR. LENGERICH: No, it is just going to be really interesting to find out the extent of thought that people have given to the concept of race, the concept of ethnicity and why it is collected. Again, I don't think we should ask everybody because I think we would probably end up getting disparities, disparities, disparities. It might be interesting just to test out a few people on it.
DR. MAYS: Think about who would be good examples. It may be in vital statistics.
MR. LENGERICH: It might be some of the administrative data.
MR. HITCHCOCK: We are sort of doing an editorial for Dr. Satcher about why it is important to collect racial and ethnic data. Dr. Satcher, I don't know where he is going to be in February. He is going to be gone, I guess.
DR. MAYS: Isn't his last day the 14th? I think it is somewhere around there. We might have him before he leaves. He might really say things then.
MR. LENGERICH: He might be more available and more vocal after he leaves.
DR. MAYS: That might be an interesting thing to do.
PARTICIPANT: Yesterday, Lisa Iezzoni came and reported on the project to the Data Council. She gave a very, very, very, very impressive presentation and it stimulated a lot of questions and additional asking for more information. So, it was extremely worthwhile.
DR. MAYS: It put mental health on their agenda, I hope, of the Data Council. They don't talk about mental health very much.
PARTICIPANT: Among other things that came up as part of the discussion, since your last meeting, I think you are aware that this was officially launched by the World Health Organization, the International Classification of Functioning, Disability and Health, which was the only thing that was highlighted in the administrative data report that the committee did.
Bill Rowe(?) came, representing the head of the government. At any rate, Bill is also taking over Peggy Hamburg's former position on the Data Council. He had been at the launching of the ICF and so, was familiar with it when it was presented and the work. While there were more question -- this was not a for action, this was a for-information kind of presentation.
So, questions were asked, sort of broad ranging questions. It was more sort of in the hallways afterward, where anything came up, so semi-off the record. There is interest in following up on the report, on seeing what other activities can take place that are consistent with the recommendations in the report.
I think it has been a very impressive impetus. I recognize that there has been enough staff turn over or people coming in sort of toward the end of the 18 months, I think, that you worked on your report, but just to let you know that there has been a ripple effect. There are no concrete exact next steps, but it served as the platform for considering, on administrative and perhaps other records, the potential use. Perhaps we could keep informed.
DR. MAYS: Should we send the report to someone, since there are some new people? Would that be helpful, with this being launched?
PARTICIPANT: We have a mailing list that was provided to us of about 150 people who we have included to be recipients of the functional status classification report. So, they are already involved. We are doing a printing, a hard stock cover copy of the report, not a printed publication, but something they could use and have in hand versus printed off the web.
We are planning on getting that completed hopefully in the next about three weeks or so and then we will get that out and distributed, especially now that this has come out.
DR. MAYS: Can you look at that list and make sure that new individuals that are coming onto the council and stuff are included? You kind of have a sense of who we should make sure gets it. We may be using a list that is kind of the other administration. We want to make sure we are using a list that is also whoever -- kind of the new people coming in.
DR. KENNEDY: I will see what I can do. For your information, as the chair of a task force, the task forces all sunsetted with the publication because they were specifically for it. I am happy to take that up but I just want you to know that Marjorie is the official representative. She always have been, but she and I have been working closely together, so it is not an issue, but I just want to be clear.
First of all, the report served as a good stimulus, because I think a couple of things may come to fruition that, without the report, may not have happened. There has been enough turnover on the committee that I can see where, if it is the kind of thing that should have a natural death, this would be a perfect time.
On the other hand, I would hate to see the committee entirely lose interest, because I think you can get more mileage out of the work that has historically been done. If it is dear to anybody's heart, or could become dear to anybody's heart, now that it is out, I would strongly encourage keeping it sort of on the horizon, if you will, for other permutations or applications or just as part of the communication network.
DR. MAYS: I would suggest equally that if, as things come up, you see a place for this to be inserted into it, in terms of keeping it alive or keeping it on some track of another permutation, bring it up. Right now, I think we still have some more appointments to be made, and we are kind of all being narrow in what we are handling.
I think as those additional individuals come on board -- and I will tell you, I advocated for someone with a mental health background -- let's just make sure that this properly stays alive. It has a death in terms of meetings, but not a death in terms of its use.
DR. KENNEDY: I wouldn't say that it is a death. I would say that it has gone through a closure and a phase. I think this report may work to stimulate some other very important pieces of activity and thank you all for that.
DR. MAYS: We should really acknowledge you and Lisa for being real troopers in the sense of taking this through the whole process and then even having her come back and do the presentation.
DR. KENNEDY: She was spectacular.
DR. MAYS: We want to make sure that that is duly noted by the committee.
DR. KENNEDY: If I could speak a little bit out of turn, I don't know if it is appropriate to send her a letter of thanks.
DR. MAYS: It is interesting, because I was going to ask the staff. I remember when we discussed it I thought, it is better that she goes, that it makes no sense for me to do that.
DR. KENNEDY: She was spectacular. She represented the committee exceptionally well, I have to say.
DR. MAYS: I will talk to them about doing that.
All right, anything else before we let people -- I know some of you have to go to the next meeting. Anything else? All right, folks. We did a lot in a little time.
[Whereupon, at 5:07 p.m., the subcommittee meeting was adjourned.]