[This Transcript is Unedited]
Hubert Humphrey Building
200 Independence Avenue, SW
Room 405-A
Washington, D.C.
MS. MAYS: First, what I want to say is that I appreciate the work that you have put in so far, in the sense that Populations have been a little on the thing side. So, we are happy to see it grow.
It grew today, and is growing in the sense of having people who are interested in the issues to at least help us through with the reports.
So, please join us at the table. Let us start, since there are several people here, with introductions, as there are some people who are new that we want to definitely welcome. So, we want to be on our best behavior so you stay. Edna, let's start with you.
MS. PISANO: I am Edna Pisano. I work with the Indian Health Department. I am really new to being staff for the subcommittee.
MS. CARTER-POKRAS: I am Olivia Carter-Pokras. I am a former staff member of the committee. Now I am at the University of Maryland School of Medicine, in the Department of Epidemiology and Preventive Medicine, and I am assisting in the background effort for pulling this report together.
MS. HUERTIN-ROBERTS: I am Suzanne Huertin-Roberts. I am at the National Cancer Institute. I am on the committee. I don't know how long I have been on the committee. I am happy to be here, and happy everyone else is here, too. The more, the merrier.
MR. SCANLON: I am Jim Scanlon. I am with HHS, ASPE. I am the staff director for the overall committee, and I have been involved with this population subcommittee for a long time.
MS. BEREK: I am Judy Berek and I am from CMS, and I am sitting in on the committee, because the CMS staff person, Liz Gutierrez, is in a meeting in New York today and couldn't come. I opened my big mouth to try to help.
MS. MAYS: We like that.
MR. LOCALIO: I am Russell Localio. I am from the University of Pennsylvania, and I have been a member of this committee for what, two weeks?
MR. HITCHCOCK: I am Dale Hitchcock. I work for Jim Scanlon in the HHS Office of Science and Data Policy. I am a staff person for the subcommittee.
MS. JENGA: I am Deanna Jenga. I am with the Office for Civil Rights. I am sitting back here, because I am trying to get to a retirement party.
MS. JACKSON: Debbie Jackson, NCH. I am staff to the national committee.
MS. MAYS: I want to thank everybody for being here, and thank you for the work that you have done and the work you are going to do. We have one more person who has joined us.
MR. NEWGATE: Bob Newgate, Physician and Patient Partnerships for Health. I am a member of the full committee and now a member of the subcommittee.
MS. MAYS: Welcome, welcome to all the new people. One more.
MR. STEINWACHS: I am Don Steinwachs. I am at the John Hopkins Bloomberg School of Public Health. We do believe in data and tracking. We just need to do for health what we do for financial areas, and we would be in great shape in this country.
I chair the Department of Health Policy and Management and, like many academics, I have many other titles, because they don't give me compensation. They give me a title.
MS. MAYS: Thank you very much. We have one other person who will be coming in, who is Nancy Breen. Nancy is also from the National Cancer Institute. So, we will welcome her.
I am glad that Jim is here. I want to, first of all, put a question to the group. Initially, when we were doing this work, we were pushing along trying to make this February deadline, with a sense of the importance of adding our contribution to the dialogue that is going on right now in terms of the issue of elimination of health disparities in racial and ethnic minorities.
Marjorie, you can introduce yourself. I think they might know you.
MS. GREENBERG: I am Marjorie Greenberg from the National Center for Health Statistics, CDC, and executive secretary of the committee.
MS. MAYS: Great. Part of what was really pushing us is that we felt it was a time where we should probably try and be in the dialogue on the elimination of health disparities in racial and ethnic groups.
I think there has even been concern at some levels that the focus of the elimination of disparities may change somewhat within the HHS agenda.
I don't know the extent to which that is true. I mean, I hear a lot of rumors and things like that, but anyway, that compels us.
So, the question I am putting -- Marjorie, I hope you will help give me some insight -- if we were to wait until June to get the majority of the recommendations out, what do we lose? I know what we gain, but what do we lose?
MR. SCANLON: Let me start. I do think it was important to get the NCHS letter about funding. We are in the process or just looking at what does the 2003 project hold, and we are in discussions to start on the 2004 budget. So, I think that is terribly important.
MS. GREENBERG: I think we gave people until Friday on the executive subcommittee. So, that should go out by Friday.
MR. SCANLON: That should be coming in and we have to deal with that anyway. There is an issue of -- we are not on the internet, but at NCHS -- as you all know, there are growing demands for race and ethnicity data, all kinds of data, that Ed described this morning. We never have the resources to do it all.
We have always, in any circumstance, tried to figure out what we can do and what we can't do. Then, in the 2004 budget -- I don't know what the 2003 budget looks like for NCHS -- but the 2004 budget is almost a million dollars less.
Now, it is a moving target, but I think putting the funding issue on the table now, without getting into specifics, is probably a good thing.
If you ask me that, I think it should get out right away, even if it is not perfect.
Now, the set of recommendations here -- my only worry is, here, there are a lot of good recommendations, but they are still in relatively raw form, and they really don't reflect some of the accomplishments already. They don't build on them.
In many cases, we are throwing in mandates with things that could be done more or less in research and statistics. I think one of the examples was Medicare data.
You could accomplish a lot through the Medicare current beneficiary survey, which is voluntary, than you can in actually trying to get data items in every one of the claims or something.
It is just a little bit of sophistication I think we have to think through, and I don't think we are there yet and, to be honest, I don't think we are going to be there tomorrow.
I think there were three recommendations. So, I am thinking we probably do need more time and I am thinking that we need to process that will allow that to happen without necessarily waiting for June.
MS. MAYS: The other thing I was also thinking about as a back up -- I will put this on the table and I am glad the two of you are here -- is, one of the suggestions was, can we pick a few recommendations. I was told no more than six. I don't know where that came from.
MS. GREENBERG: No more than 10, for sure.
MR. SCANLON: You can do it by priority -- you may want to go on record as expressing great interest and support for, and a wish to be involved in a lot of the activities related to eliminating and reducing disparities, without necessarily going into the others.
You can say, we are working on other recommendations which we will be sending shortly. It just depends which ones you want to advance for the committee's deliberation at this point in time.
Even now, if we have had agreement on sort of the theme of the major recommendations in the letter, we could probably agree to a process, if the full committee is willing, to kind of handle that through the executive committee or something like that, or through e mail.
MS. GREENBERG: It might be hard to do that way, I think.
MR. HITCHCOCK: Should that be the specific ones or should it be the over-arching ones, that we do, the six.
MR. SCANLON: It could be a mixture.
MS. MAYS: We have some over-arching ones. We are just kind of waiting for the report to get here.
MR. SCANLON: You can mix them up, I think, but I would always do them in the order of priority and importance. Start with the policy ones and then go down.
For example, the very first one is quite complex. It has language as well as race and ethnicity data. It suggests mandates along with other things. I just think you need to sort it out.
That is a way to do it. I am still not sure we could even get a short letter through tomorrow, even four or five, but maybe we could ask the committee, say that we are considering this strategy, if we could agree what the three, four, five, six are, and then focus on those, and then as a strategy send the rest of them in later.
Then, even then, buy a little more time by asking the committee -- you could do an e mail circulation and then refer to the executive committee.
For many of the committee members, particularly the new ones, I think this is relatively new territory, and they may want more time to think it through.
MS. BEREK: Can I just ask if this makes sense as a suggestion? If you get down to just a few recommendations, you will not touch into all the categories listed here.
I think all the categories listed here are important. It might be of value to say, we are working on broad recommendations involving all these categories, and mention all the categories, but we would like to quickly point out, because we think they need more rapid attention, these three or four things. That way you don't lose all the different pieces you have got listed in here.
MR. SCANLON: You could even say what those other things are.
MS. BEREK: Right. I mean, some of the things I think are important to get on the table.
MS. GREENBERG: You can take the approach, I think, like we did with privacy by putting the two letters saying, we are in the process of doing the full report, but we feel some of these issues are of such concern and of such high priority that we want to bring them to your attention now, that we did with the letter of September, and then a second letter in November.
Now, if we pulled out -- there is a whole set here from 23 to 32, about 10 recommendations, I guess, on American Indians and Alaskan Native data, and there seems to be some support, particularly since they, I think, go a little bit more into information infrastructure issues -- although I have to admit I didn't have a chance to read all of these -- but that could be pulled out as just something to refer to in the letter, and then a separate letter. So, that would already pull out those as a second letter.
MS. MAYS: Say that again, Marjorie, because I got a little bit confused. In the first letter, you would refer to these or not refer to these?
MS. GREENBERG: I think you could refer to a second letter, you know, your hearings identified these problems or issues, and there is a second letter.
I think they are of a broader information infrastructure and related to the whole information systems covering these populations which probably, I think, would get somewhat lost in this overall letter. So, that is already pulling out some.
I think the advantage, if we could do it and come up with some key recommendations that you could get everyone to agree to, or at least a letter that everyone agrees to, is to kind of get on the radar screen of, say, the Data Council, the people who are looking at what is the committee thinking about or recommending.
I don't think there is a -- I couldn't support trying to get all of these in. Just the ones that I have been able to read, too, I think what you want to do is send recommendations -- I mean, you have several purposes, but you would want it to be clear what you are recommending.
If the department or the agencies, in fact, don't understand what it is that you are suggesting, I mean, then you are dead on arrival.
I think it is more important to have really clear what are you recommending and then we take it from there.
I think at this point, just the ones even I have read, I don't understand them.
MS. MAYS: It sounds like the strategy should be -- and I know that one of the drafts that Nancy read that was part of her also comment is almost like, what is the purpose or what is the goal you are trying to achieve, and then what you want to do.
In that, also, if you are clear what it will take to implement it, to say something about that. I am beginning to understand kind of a different structure in which to put forth these recommendations.
MS. GREENBERG: I think I would separate out language from race ethnicity.
MR. SCANLON: You are going to get a lot of support for one and you are going to have a big argument -- not the same supporters.
MS. GREENBERG: The policies on race ethnicity aren't so much on language. That doesn't mean I wouldn't make recommendations on language, but I would separate them out.
MS. BEREK: Separated out, but I would combine, and we will give you further discussion on the issue of both collecting language information and translation. I would put that together. I think that is an incredibly important issue to get on the table and I would combine them and get it on the table in that way.
MR. LOCALIO: Could I ask a kind of preliminary question that I think would help those of us who are relatively new here to figure out what we need to do.
MR. LOCALIO: When we say this goes to the department, who actually reads this, and what is the process by which the department makes a decision?
Is this read by one person? Are the recommendations given out to a variety of people? Do they go to a meeting? Do they sit around and decide what to do?
MR. SCANLON: We have an agreement. Any recommendations from the full NCVHS, they are recommendations to the Secretary. Usually their first stop is to our HHS Data Council.
MS. GREENBERG: The letter goes to the Secretary with a cc to the chairs of the Data Council.
MR. SCANLON: The Data Council is most of our senior -- in essence, the data managers and policy makers in HHS. We usually ask the NCVHS to circulate the report to the council and we usually ask for a briefing.
Then we ask each of the agencies to look over the recommendations very carefully. Let me be honest. This is a tough group, and unsophisticated, simplistic recommendations are not welcome, even good ones.
That is what I am saying. I think the committee has a reputation of being, in most cases, fairly sophisticated in what it recommends and what it doesn't.
That is what I want this subcommittee to do as well. Otherwise, your recommendations will be just, oh, well.
You have to be careful about mandating things. Just saying that, you know, there ought to be a law that requires this or that, you have to be very careful.
The process, I think, is that every agency will get a crack at it and they will get a chance to evaluate what you are recommending.
They can be asked, what are they doing now to support this, what could we do collectively. Then, it could go to a Secretary, if there is a need to. If those folks have the authority to make those changes themselves, that is what they will do, and then we will report back to the full committee.
That is the generic process. Again, many of these things involve bigger budgets and new statutes and new regulations, and those are the things that are going to be harder to do.
MR. LOCALIO: Would it help for each recommendation or group of recommendations to try to have us understand whose hot buttons we are trying to push and whose oxen we are goring, so that we can say, all right, this would be of interest to this particular division, and they would have these particular concerns, or this particular recommendation would involve these three divisions? I think that would help.
MR. SCANLON: In the report, it probably would.
MS. MAYS: Yes, I was going to make a distinction. One of the things, you just got something and I will tell you a little bit about what it is.
In the second where it had recommendations where it wasn't in the executive summary, part of what we were going to do is try and explain what the rationale was for the recommendation and also to try and identify kind of how this has evolved, whether we are referencing the Institute of Medicine report, whether there is a Data Council report.
Also, provide the fact that this is a mainstream recommendation. It isn't something that is coming out of the blue.
I was feeling very strongly about, we are not trying to be kind of in left field somewhere, but instead, just say, you already have these things in place. We just need you to pay a little bit more attention to it, or it needs more attention from you in terms of resources or staffing or what have you.
I think that, as we try to work on the recommendations, it was interesting, particularly in terms of our federal partners here.
They could tell the difference between, well, this is something that this agency is responsible for. So, don't say HHS. Say the agencies and sometimes even list which agencies might this recommendation be central to, or who you want to make sure would get it. I think that is definitely an important strategy.
Let me just comment on what you have. The reason I wanted to give it to you, I don't want to confuse you with a lot more paper, but in here was a set of over-arching recommendations.
The reason we had those originally was to try and kind of say, well, what are the general issues here, and then take people into the physics.
It might be these over-arching recommendations, that we could think about whether or not those could be the few. So, turn to page seven.
Now, what you have, just so that you know what this is, is that this is a draft for a report that would be on population-based data.
In the beginning, it has all the recommendations, that we were just working on all the recommendations. So, the recommendations as they appear are what you had today, and those cut across all the hearings.
Once you move beyond that into the report itself, this report was written to focus on population-based data.
MS. GREENBERG: Related to health disparities?
MS. MAYS: Related to the collection of data on race and ethnicity and in terms of whether or not we are collecting data on health disparities.
MS. GREENBERG: Okay, as opposed to health care data, population data.
MS. MAYS: Yes. So, on page seven are over-arching ones. I don't know if you can take a look at those and see if you think that that would be useful as a starting point, or whether we would go to specific recommendations and pick some that might be useful.
MS. GREENBERG: These are population and these are more health care related.
MS. MAYS: Yes.
MS. CARTER-POKRAS: Actually, if I could clarify, actually, the recommendations that were passed out today are revised based on comments, as I understand, that have been received. So, the health care quality is just one section. There are several different sections.
Also, to clarify, in regard to the inclusion policy, Deanna Jenga, unfortunately, could not stay so she could explain, from the Office of Civil Rights perspective, the inclusion policy does not have the weight of law.
Even though it pertains to data systems that are funded and maintained by the Justice Department, it doesn't have the reach that, say, the Medicare managed care reg or the state children's health insurance program regulation has. That actually is a legal requirement. That is different.
MR. SCANLON: When you say you want a law that is going to require people to do this or that, you have to consider who really wants it and what can HHS really do about that.
I think you should focus on the priorities you want to achieve. I am just saying you are building on 20 years of previous work and recommendations.
You can make a whole new set of recommendations, and I don't know that we will have to, but really, you should go with the flow in terms of what has happened previously, where the remaining work, where the new work needs to be done.
Build on the inclusion policy. Say, that was a pioneering first step on the part of HHS, to adopt that policy. It is not implemented in all places yet. It is much harder to do it in regulations and other places, but you urge the department to --
MS. CARTER-POKRAS: And it doesn't have the weight of law, as far as the Office of Civil Rights is concerned.
MR. SCANLON: You are going down the regulatory route now. That is a different issue. We are talking about what systems -- it is the Secretarial policy now to include race ethnicity data in all federally sponsored HHS data collections. Some of them do and some of them don't. I think, clearly, you could make the case that we should speed that up and implement it further.
If you now want to mandate that others do it, or something else, that is a little different. That is a regulation or a statute, and I don't know what the support is for that.
MR. LOCALIO: Others outside of HHS; is that what you mean by others?
MR. SCANLON: Folks who are not in federal programs or HHS systems.
MS. CARTER-POKRAS: That is a little difficult to kind of make that distinction.
MR. SCANLON: In all health records, there ought to be a law that race ethnicity data is collected in all records. That is a rule or a law or general applicability.
It is one thing to say that, if you receive our benefits, you agree to the conditions, and that is what we have on the books.
MS. CARTER-POKRAS: This is building upon recommendations that were made in the unequal treatment report from the Institute of Medicine, as well as the Commonwealth funded study, the Shire report that came out, that was funded by the Commonwealth as well as others, is that the department needs more in place, that those who are receiving federal dollars, to pay for health care enrollment, access and utilization, that there be a way to monitor that everyone has equal access to quality health care.
MR. SCANLON: That is very specific. If that is what you mean, you should say that.
MS. CARTER-POKRAS: Unfortunately, the background information is not attached to this, but there is some background information that has been sort of drafted, that would certainly help, for those who are not as familiar with the issue.
MR. SCANLON: No one would have read the recommendations. That is why you have to say what you mean.
If you say that, in order to discharge its responsibilities for civil rights, that the Office of Civil Rights needs to improve, or HHS should improve, this capability, that capability, that is a programmatic requirement, and that is something that we have the authority to do.
That is what you need to say, not a general sort of -- you have to be really clear about what you want and what we can really do. I don't think we are there yet.
MS. CARTER-POKRAS: Now that is clarified, I guess we can work on the recommendation.
MR. SCANLON: If that is your highest priority, that is fine.
MS. MAYS: I think, at this stage, given the process of what we decided, and that is, okay, I think we can get the letter through. The letter kind of flew okay.
I think at this point it is deciding what are the priorities, if we could only pick a few, that we would like to share now with the Secretary.
I would say that it probably is to be more on the side of being kind of over-arching than anything else, rather than getting too specific, unless there are one or two that there just would be excellent examples, they are quite doable, they fit with the direction the department is going in. Then those are specific that I would take.
Right now, with kind of where we are relative to both the budget process and the issue -- the reality of where we are with race and ethnicity, I don't know that I would want to start there, because I would want the department to listen to us when we come back again.
MR. SCANLON: There may be half a dozen, maybe that, if the group could agree on, those are the ones that you want to advance.
You may want to use the strategy where you sort of do the easy ones first -- not that there are any easy ones.
MS. GREENBERG: Mom and apple pie.
MS. MAYS: There are a few easy ones.
MR. SCANLON: There is no problem with identifying some now, moving them along, and then coming back with further work on the others. I think the others will improve in quality as well, as you work on them. I think, again, you are going to have to educate folks.
MR. STEINWACHS: I have always been a great believer that people like to solve problems. It seems to me somehow this letter, or whatever it is, is going to motivate this, and it needs to identify the problems.
I have my rule of three. That may be the wrong number, but it seemed to me that there are three categories of problems we might be addressing.
One is unequal health or disparities in health, and the other is unequal access, or disparities in access, and the third is unequal treatment or disparities in treatment.
The IOM report just dealt with unequal treatment. The committee was told not to deal with access and it didn't really deal with health. Health was the background.
As you were reading the recommendations, or started to read them, they were all stating health, but not necessarily access.
It might even be worth some discussion for looking for a few key recommendations. Is it across all three or these or is there one of these categories that merits more?
My sense -- it may be wrong -- my sense was that the department was not overly enthusiastic about the IOM report on unequal treatment.
Unequal access issue, certainly, some came up with SCHIP and the other things where there are programs that are addressing pieces of that. Unequal health, maybe we already know a lot, but we do need to track it, because it could get worse instead of better.
MS. BREEN: I was actually going to propose some priorities. I don't know if we are ready for that or not.
MS. MAYS: We are trying to move there, so I would say yes.
MS. BREEN: The reason I wanted to propose it kind of early on is we have some people with some very broad perspective from within the department, and the unequal treatment report, and I really would like to take advantage of those perspectives to be able to get these into something very specific that lays out why we need them in a way we can agree on, what we want to do, and how we can word craft them so that they are going to be understood and attractive to, and hopefully implemented as soon as possible, even by this administration.
So, I think that maybe the most important, one of the most important, is to improve collection on race ethnicity.
I think we need to emphasize that we do well on whites, we do well on blacks. There is a little room for improvement on those, but basically, we do well on those.
We do pretty well on Hispanics, although there is some misclassification in that group, and we really need to improve the Asian Pacific Islanders, and we need to improve the collection of data on Native Americans.
So, I would emphasize that, within race ethnicity, because I don't think people will necessarily think of that when they see race ethnicity. They think of black, white, Hispanic.
Then, primary language. I think that is another one that goes through the report continually, and is an important over-riding goal.
Collection of data on primary race, that is going to stop, I understand, in 2004 on the National Health Interview Survey, and it is going to make the bridging process quite difficult, if we are not collecting. Now, Marjorie has her face crunched up, so maybe it is not.
I understood that you were asked not to collect it any more.
MS. CARTER-POKRAS: That was the testimony at the hearing, that there are conversations going on with the Office of Management and Budget, that there were some concerns that OMB was actually asking them to stop collecting.
MR. SCANLON: Because it doesn't conform to the new standards.
MS. CARTER-POKRAS: Right. NHIS was arguing that it allows the National Interview Survey to do the bridging. That is why there are a couple of recommendations in here.
MS. GREENBERG: I don't know where that is right now.
MS. BREEN: Since we don't know, maybe it is a good idea to keep it in, because it really would help us out everywhere throughout the Public Health Service, and anybody working with data.
MR. SCANLON: Raise it in a way that you are concerned that the health interview survey, our flagship survey, may be changing -- again, that is very specific.
MS. GREENBERG: But if, in fact, those discussions are underway, it would be better to get that in sooner rather than later.
MR. STEINWACHS: Just a small question. Does the improvement in collection also deal with who determines race? Are you presuming it is always self reported ethnicity, or is there some system -- I look at you and I determine the race.
It seems to me if you are talking about improving it, there ought to be a consistent way of collecting it across systems, which I am not sure is true either.
MS. GREENBERG: The NHIS supports self identification and it supports the question when there is an identification, but it does allow for the other, although I agree that is not very desirable.
MR. SCANLON: There are cases where you don't have the individual there. Most health care records, it is not quite like having the subject or the person interviewed there.
I think we would leave that to the committee, but if you are concerned that there is a plan being thought about in the HIS that would sort of derail the comparability efforts, that would be worth raising.
MR. LOCALIO: Either that, or an exemption.
MR. SCANLON: There are many ways to deal with it, but the issue itself would be --
MS. GREENBERG: Either that or what?
MR. LOCALIO: An exemption.
MR. SCANLON: You would ask OMB for an exemption. That is certainly a solution. You would want to certainly raise that as an issue.
Ms. BREEN: Then, a translation of consent forms, other forms and survey instruments into Spanish and other languages.
I think other languages really depends on the locality, probably. I don't know, you may have some suggestions.
MS. BEREK: It is actually very important to talk about other languages. I mean, there have been some things in the New York 1115 waiver, I think, it was 10 percent of the population in the area, that you had to use the language.
I don't know if you want to pick a number -- as I said to somebody, that meant we had 130 languages in Queens. I mean, we sort of had to be very careful.
I think you just need to sort of think about, when you say, and other languages, you need -- one, you need a threshold, but you don't want it to be so high that you are really cutting out huge pieces of the population.
You may ask for a discussion on thresholds, as opposed to declaring a threshold, and not just leaving it to whatever you want.
I just want to tell you, from the Medicare point of view, it is a huge amount of money and we don't do it except in Spanish, but we should.
MS. GREENBERG: What?
MS. BEREK: In Medicare, we only do Spanish, and we now have a Chinese web page, but we don't translate everything beyond Spanish.
MS. MAYS: Let me just say, living in California, the threshold issue would be critical. We could easily do an enormous number of language.
We have to decide for different surveys we conduct how many languages. I can tell you that one of the surveys with CHIPS is seven, and that is very expensive.
MR. HITCHCOCK: It is going on right now with the NHIS. Their IRB is talking to them about their consent form, not only in terms of translating it into Spanish, but translating it into sort of elementary Spanish that the folks on the street can understand, that aspect of it as well.
There isn't, apparently, the sorts of software we have available for English, checking the language in Spanish.
MS. BREEN: There are two other recommendations, but I will move to the American Indian Alaska Native data rate recommendations.
I think that I agree that we should have a second follow up letter. I also think that, in this letter or set of recommendations, we need to make the point that the hearings suggested that, of all the groups that we heard about, this is where the needs are greatest, the funding is least, and the most work needs to be done, and the most attention needs to be put into these areas.
I tried to sort of consolidate the different recommendations into just a couple. One is to provide funding and technical assistance for infrastructure development comparable to those in the DOD and the VA.
The Health and Human Services should support an interconnected Indian health data network for the 300 widely dispersed health care sites.
HHS should triple its investment in information and communications technology for the Indian Health Service and its clinics.
MS. CARTER-POKRAS: That is three. One was, provide funding and technical assistance for infrastructure development.
MS. BREEN: Comparable to the DOD and VA.
MS. CARTER-POKRAS: Right. That is currently number 25.
MS. BREEN: It is 23 and 25 combined, actually.
MS. CARTER-POKRAS: Then the other one is support interconnected health care --
MS. BREEN: Indian health data network for the 300 widely dispersed health care sites. That is from number 24. Then, number 26, I just summarized it, HHS should triple its investment in information and communications technology for the Indian Health Service and its clinics.
MS. GREENBERG: Where did you get the triple?
MS. BREEN: That came out of the task force report that we were given from the Indian Health Service. Isn't that where it came from, Edna?
MS. PISANO: The restructuring report? That sounds right.
MS. MAYS: Maybe we should back off the numbers and say, substantially increase.
MS. GREENBERG: If you said triple, I think you would at least have to say, this was the recommendation of the --
MS. MAYS: In the report we were going to have a place to say where these things came from and the rationale, but in a letter, we don't quite want to do all of that.
MS. BEREK: If you are going to talk about infrastructure for the American Indian community, I just looked at a -- I am not supposed to say this -- a draft GAO report that indicated that only one of the territories can conceivably be HIPAA compliant.
So, if you want to talk about infrastructure investments, it really should include the territories.
MS. CARTER-POKRAS: There is a section on territories.
MS. BEREK: I know, but if we are going to compress, what I am suggesting is that we, on the infrastructure investment, we need to not just talk about the Native American and Pacific Islander community, but we need to specifically address the territories, because it is a nightmare. It is not a public report yet.
MS. MAYS: We didn't even hear that, but we have enough on the territories that we can actually say that. We won't necessarily say about HIPAA, but say about the infrastructure -- we have territories in here.
MS. BEREK: That is what I am saying. I think you ought to just add it in.
MS. MAYS: Just kind of together, I think, is what is being said. Okay.
MS. BREEN: There are two last ones that I think are a little less important --
MS. MAYS: We are getting up to about 10 here.
MS. BREEN: The first ones I mentioned are over-arching. This is from 41, recommendation 41, the inclusion of contextual variables or the linkage to data sets for geocoding to provide greater insights into the structural contributions to health disparities.
Finally, increase regional data centers, in order to facilitate both use and accessibility of small samples, as ethnic and racial groups are more likely, in federal population data sets, to be small in size. That is 54, I am sorry.
MS. CARTER-POKRAS: I have A, B, C, D, E, F and G. Now you have given us the ones for American Indians and Alaskan Natives. It would be great if we could do the ones for improving collection of ethnic and racial data --
MS. BREEN: Those came out number one. It has both of those in the last line. Those two run through many of them, which is why I didn't give it a number, but it comes up first in number one.
MS. MAYS: Improve collection on race and ethnicity, is what she is talking about.
MS. GREENBERG: Improve collection of primary language, and then there was the issue of primary race.
MS. MAYS: Three was primary race. Two was improve collection on primary language, three was improve collection on primary race.
MS. BREEN: That is number 14.
MS. MAYS: And four was the translation of consent forms into Spanish, and localities in terms of other languages.
MS. BREEN: That is number nine.
MS. MAYS: Then five was the series in terms of the American Indians Alaska Natives. So, it is 23, 25, 24, 26?
MS. BREEN: Correct.
MS. CARTER-POKRAS: I am sorry, which was the language?
MS. GREENBERG: It was included in number one.
MS. MAYS: Primary race was number 14, translation is number nine.
MS. CARTER-POKRAS: Language, I see that we have got, starting with number nine, nine through 12 have to do with the translation.
MS. BREEN: I pulled it out of number nine.
MS. MAYS: Olivia, it is not that we are going to take the recommendation as it exists. It is going to be simplified. It really is going to say, improve collection of data on primary language, that is it. Improve collection of data on race and ethnicity.
Since that is the first one, it is going to be a little bit like, here is what we do well with but here is what we still need to do. Improve collection on primary race, and we were going to say a few words about HIS and what is going on there. To get through them tomorrow, we have got to keep this --
MS. CARTER-POKRAS: The primary race, if I recall, had two of them, because one of them had to do with asking the Secretary to actually have conversations with --
MS. GREENBERG: That is number 14.
MS. MAYS: The new one is -- it is number 14 -- and it is just going to be, improve collection on primary race. We are going to leave out the baggage and what have you. Think tomorrow. Think how we will get through tomorrow.
Let's get all that we want on the table and then come back. I think we are having a good list here and I don't want to quite shut us down yet. I want to see if other people have other things. We are getting some sense of support for what has been put out.
MS. BEREK: In grouping the Asian Pacific Islander Native American stuff, could we leave the infrastructure piece out of that, because that is where you want to build the territories in?
You were saying that all the recommendations that were mentioned around Native American Pacific Islander would be grouped into one sort of subset. What I am suggesting is, don't lump them all together.
Leave the infrastructure piece separate, so you could bring in the territories on the infrastructure piece. So, I was suggesting move it into two, one broader and one narrower.
MS. GREENBERG: What I suggested, a second letter?
MS. BEREK: No. I don't remember what you read out in terms of the investment in the infrastructure.
MS. BREEN: Yes, these recommendations in the 20s, and that it be comparable to the Department of Defense and VA?
MS. BEREK: Yes, and that you also include --
MS. MAYS: Could you say the infrastructure one, Nancy, so we are clear what we are putting on the table?
MS. BREEN: To provide funding -- this is from number 23 and then I am going to jump to 25 -- to provide funding, technical assistance for infrastructure development in the Indian Health Service, comparable to those in the Department of Defense and Department of Veterans Affairs.
MR. HITCHCOCK: That bothers me a little bit. I think the IHS does have that system in place. Now, it may be more a technical assistance problem.
The patient information system is really quite sophisticated. Maybe it doesn't get the funding they should, but I am not even sure but that the VA stuff wasn't modeled after what the IHS has.
MS. MAYS: Do you know what we heard at those hearings? We were hearing that they would prefer to spend their time developing a billing system, so they can get reimbursement for services.
MR. HITCHCOCK: That is the tribal hospitals.
MS. BEREK: Right, and I think those are the places where you have got comparability between the territories and the Native American community, which is the tribal hospitals, which are not government agencies.
It is the tribal hospitals that need both money and technical support, as do the hospitals and the local governments in terms of the territories.
MS. MAYS: Just so that I am clear, because I do think this is probably important to clarify, is it that IHS has the kind of information system that is equivalent to other federal government systems? Does anybody know?
MS. PISANO: We do have, at IHS hospitals and health centers, we have a patient registration system and we also get the encounters.
MS. MAYS: Is it comparable to -- I mean, the Veterans Administration is where it is at.
MS. PISANO: They have a long term working relationship with the Veterans Administration in developing a lot of the systems.
MS. BREEN: You head up the research statistics. So, are the data that you are getting adequate? Are you happy with the data you are getting or are there gaps that you feel need to be supplemented?
MS. PISANO: For the data that comes in from IHS direct facilities, we get the data. Where some of the problems have been are with self governance tribes and 638 contract tribes.
Sometimes their system is not compatible to what we use within IHS. So, it is difficult for them to report their data into our system.
MS. BREEN: Does the 300 widely dispersed health care sites, is that what needs to be -- is that the other piece, not Indian Health Service, that may need to be brought up to speed? I am just trying to get this to cover the subject.
MS. PISANO: I think what is, in my viewpoint, what is needed is really the tribes that are in self government and 638.
MS. MAYS: I don't know what 638 is.
MS. PISANO: Public Law 638 is self determination, where tribes have the option to contract to provide health care.
Then there is also another law on self governance where tribes, through a process, are eligible to sign compacts, again, to deliver health care. Those are two separate laws.
MR. HITCHCOCK: It sounds like our gap overall is that, while they have good utilization data, they don't really have good population and health status data, because the survey is such small numbers.
MS. BREEN: One reason they may not -- I don't know, maybe Edna, again, you could help us, but I was at a data release conference in California for the California health interview survey last week.
A survey or a study was quoted as saying that the Indian Health Service only serves about 10 percent of American Indians routinely in California.
If that is nationally the case, then we do want to improve more than just the IHS infrastructure.
MS. BEREK: I think that is probably true. I forget the statistics. I think it is something like 60 percent of American Indians are in urban centers, aren't on reservation sites.
MS. PISANO: That is about right.
MR. STEINWACHS: You could say the same thing about the Veterans Administration and veterans. Are you interested in veterans or are you interested in the VA?
MS. BREEN: Well, there are health disparities in the veterans. We haven't focused on them.
MS. MAYS: So, how should we try and fix it?
MR. LENGERICH: I guess I am -- I think that we are moving along the right lines here in identifying some priorities, and I am seeing two major shifts.
One has to do with kind of the population based survey approach that NCHS does so well and does for their living, and that was our first hearing that we had.
So, I think that improving data collection is certainly part of what we want them to do on race and ethnicity.
The other piece that they do that they are working with, we haven't talked much about, and that is the third hearing, which was the state perspective. They are going through trying to re-engineer all the state data collection systems.
Those two pieces make me remember back to the letter that we have sitting around somewhere with the executive committee raising funding issues for NCHS.
I guess I would propose that we tie these sorts of things to that letter somehow, the population based piece and the safety back to the letter about NCHS funding issues, that NCHS funding, they are looking at cuts and shifting and things like this, and here we are trying to collect more and better data from population based surveys, so that we can talk about race and ethnicity.
So, I would like to link these two somehow together, and then leave other things for, at least this preliminary go-round, for the recommendations that go with this, things around administrative health care, or data systems that are in existence.
MS. GREENBERG: You are not suggesting pulling back that letter, the NCHS letter.
MR. LENGERICH: I am not sure what I am suggesting, because I have forgotten what the letter looks like.
MR. STEINWACHS: It is a separate recommendation, but was tied to that letter.
MS. GREENBERG: Yes, I don't think you want to start re-opening that letter. I mean, I think we have to get that letter out, which is the NCHS letter.
I think you are right about referring to it and linking it. One of the things I was thinking was, like, just even the states being able to implement the multi-race in the vital records is totally impacted by budget.
I think a number of the states aren't going to be able to implement it for several years.
MS. BEREK: We have until the end of the week to put in comments on that letter. So, why couldn't we add a paragraph as a comment to that letter that would talk about the things Eugene just raised in terms of the issues we are trying to address while they are taking away the money.
I mean, I think it would make that letter a much stronger letter. I, of course, as an agency employee, have no opinion on that letter.
MS. GREENBERG: I think, in particular, if you could draft a paragraph that you could get past the committee tomorrow, then we could stick it into that letter, sure.
MR. LENGERICH: And we could pick up the population base, the collection of population-based data on race and ethnicity into that, and maybe language, too, and the safety.
MS. BREEN: With the NCHS and probably the other surveys that NCHS does -- you could probably comment on this, Marjorie, it is usually pretty easy to get some kind of language data, because there is an administrative question that the field reps check off, as to whether they administered the thing in English or not.
So, already you have a crude measure of language, but you are not getting primary languages, which is what you would like, in order to provide services in appropriate languages.
MS. BEREK: We need to figure out what that would be.
MS. BREEN: NHIS is probably not the place to get that information.
MS. GREENBERG: The letter that you send, the letter you are working on now, I would still include that paragraph, but I think adding a paragraph to the letter about NCHS is a good idea.
MS. CARTER-POKRAS: Just to clarify, taking a look back at what was discussed at the population-based hearing, actually, it was a lot more than just the NCHS. It was the Medical Expenditure Panel Survey, the Medicare Current Beneficiary Survey, the National Survey of Family Growth and Behavioral Risk Factors. So, it discussed much more than just NCHS.
MS. BEREK: That is why you need to do it twice.
MS. GREENBERG: Yes, that is why I said, that wouldn't take care of it.
MS. BEREK: It wouldn't take it out of this letter, but it will get it in the other letter, which will arrive faster.
MS. MAYS: So, Eugene's points are going to go into a paragraph that we could put into a letter that we have until Friday. That is to be done by the executive committee.
I am assuming this is like what we talked earlier, that we do not have to take that to the full committee, Marjorie; is that correct?
MS. GREENBERG: Not the whole letter, but if you are adding a whole new concept or a new issue, then I would say -- I think you can couch it that this is an opportunity. This letter is going, and some of these issues are relevant to NCHS data collection and budget. So, let's stick it in there.
I don't think we can just do it without -- it needs to go past the committee, but I wouldn't think it would be controversial.
MS. MAYS: Never controversial.
MS. GREENBERG: We don't want to bring the whole letter back to them.
MS. MAYS: Eugene, I want to ask you, when it comes back, if you could put your words down in a paragraph, and we will pass it around. I think we can kind of get it that way.
I don't want to like negatively reinforce, but if you suggest something -- some of what you are saying will be done by some other people. Nancy, did you have other recommendations?
MS. BREEN: No, I didn't, but I just wanted to finish up with the American Indians Alaska Natives data, because obviously, we hadn't covered the subject by just saying Indian Health Service.
It seemed to me from what you said, that we need to collect population-based data. So, we need to make sure that this infrastructure is developed, not only in the Indian Health Service, where it probably is, and maybe we should commend them for that, but the tribal health services and the public law -- were those the two other entities that would cover health care?
MS. PISANO: Self governance tribes and the 38 contracts.
MS. BREEN: Now, did that cover urban Indians as well?
MS. PISANO: No.
MS. BREEN: What do we say about that, and urban Indians?
MS. PISANO: I just want to make a couple of statements. As someone said in the committee earlier, data issues on American Indians is very complex, because you have all these different universes that you have to address.
Now, the Indian Health Service deals primarily with federally recognized tribes. Then you have the other set of universe, those who live in urban areas, and IHS does have an urban Indian health program. Compared to everybody living in urban areas, it is small.
MS. MAYS: And you have got a huge non-federally recognized tribe population.
MS. PISANO: Then you also have state recognized tribes, which is another universe, especially a large number in the eastern United States.
Then you also have, well, the Oklahoma tribes are federally recognized but they don't have a land base. You also have tribes living on the Canadian border and the Mexican border who have tribal members living in Canada or in Mexico.
I mean, it is just complex. As Nancy stated earlier, in the national surveys, you really don't have large enough samples, in the survey itself, to just present data on American Indians Alaska Natives.
I think that is where tribes become concerned, or nations become concerned, is that you hear all this data for whites and blacks and Hispanics, but where are the data for American Indians Alaska Natives. Then it still doesn't address the tribal data, where is data from my tribe.
MS. GREENBERG: I mean, the community HANES, that would be a beautiful thing to do with Indian populations. The methodology has been available.
MS. BREEN: Marjorie, historically, HANES is collected only on black, white and Hispanic. Are they thinking of extending it to other communities, depending on the populations and locality?
MS. GREENBERG: I think we collect the race ethnicity of the person.
MS. BREEN: I thought you screened out people who weren't black, white or Hispanic.
MS. GREENBERG: No, we might over-sample blacks and Hispanics, but we just don't have enough sample size of the other populations to make estimates, but we don't screen them out.
MS. BREEN: We need a summary way --
MS. GREENBERG: Except when we did the Hispanic HANES.
MR. NEWGATE: Excuse the interruption, but is there a generalized problem of small populations? Isn't that something that needs to be addressed?
MS. MAYS: Small and geographic. It is the two things. Some populations are not necessarily small, but it is the geographic issue, like when we talk about the territories or something like that.
Then there are some that, even in any population-based data set, the numbers are so small that they always get put into an other category.
MR. NEWGATE: Which doesn't solve the problem.
MS. GREENBERG: That is why over-sampling in some of these populations doesn't make sense, but something targeted like the community HANES or that kind of thing --
MR. NEWGATE: Could you use the community HANES?
MS. GREENBERG: Absolutely, but there is no money to do it.
MR. NEWGATE: I am from Mars on this. The Federal Government is not the only institution around. There are other interested parties that might fund a community HANES, if you could agree that the data that would be collected you would mesh with the other data.
Why not call a spade a spade and say some of these things are going to have to come from other methods following federally dictated rules. Why bound it simply to federal funding?
MS. GREENBERG: You could take that argument to almost anything. Is it the responsibility of the department to address the data needs of these populations.
MR. NEWGATE: I think it is, but if they can't do it with existing methods, then you have got to suggest a method that augments that capability, and it seems to me that is what you should do.
MS. MAYS: I am going to suggest something, because this was my role earlier in the group which is, if it gets so complicated we can't settle it here, we will never get it through tomorrow.
So, the amount of time that we spent on this one tells me that we can't get it through tomorrow. I think what we need to do is maybe take out the infrastructure issues to go in this letter and let the infrastructure issues about American Indians, Alaska Natives, go into the second letter.
Nancy, I am going to ask you, because you kind of have it wrapped up here. It is like, I think what the complications are, are making sure that we get all the different groupings that we need, 638, tribal health services -- I mean, I kind of got lost also. Then there is doing the urban.
Edna, if you could help Nancy to redo that one, then we are going to keep it only on data collection issues. We are not going to do infrastructure, because that is what I think we are struggling with.
The question or the point that you were raising, I would say I agree 100 percent, which is why I am asking about the question.
There is a section that will be in the population report called partnership. I am a big believer in that there are foundations that are sitting there wanting to do some of this but it is kind of like, the federal government does it this way.
Well, it is cute they do it this way, but if they have broader discussions some will do some of this, the Commonwealth, the RWJ.
So, we can suggest to the federal government what these partnerships might be, and they can either take advantage of it, or one of the things that I would like to do at some particular hearing is to invite these foundations to discuss these issues with us.
I think part of what we want them to do is to kind of carry some of this work. Some of them I have had kind of brief conversations with, the whole thing of grant makers and health. I have come to discover that they want to hear about this.
MR. NEWGATE: And some states have specific populations that they are interested in.
MS. MAYS; I agree. So, if Nancy and Edna can figure that one out, about what else you need in it, then I am going to say that that is the other recommendation we will consider.
Are there any others? Then we are going to try to repeat all that we have, figure them out, and then see if we are good to go for tomorrow.
MS. GREENBERG: Are you now thinking of just including the Native American all in the same letter?
MS. MAYS: I am thinking that if they can talk about the American Indian Alaska Natives, and try some data collection issues, then we would keep them in this letter, because we should also try to say something about the territories.
If we get back to data collection issues that span the two, then that is fine. If it is infrastructure issues, then I would say, let's put it in another letter.
MS. GREENBERG: I think the territories have infrastructure issues, too, don't they?
MS. BREEN: Territories have huge infrastructure issues.
MS. MAYS: They have data collection issues, too.
MS. GREENBERG: So, there is both.
MS. MAYS: So, I would like us to try -- then I think it keeps us on point to just do kind of data collection, because that is what we are doing so far.
Infrastructure is separate and I think that, based on what is being said, it might be that rather than a letter that is just on American Indians, it is about American Indians and their territories together, because there is a lot of overlap in those issues.
So, does anybody have any other suggestions or recommendations or priorities, things that you think that should be, at this point, in this first letter that is going out?
Russell, do you want to bring up your points that you had in terms of your edits about the sample power or anything like that?
MR. LOCALIO: I think that this letter, the support letter that we just got handed to us probably is the correct vehicle for that, and there is something actually in there.
Now, the draft letter dated February 15, 2003, that is to be approved tomorrow; am I correct?
MS. GREENBERG: No, that was actually approved, essentially, at the last meeting, to be finalized by the executive subcommittee.
Then there were some issues about timing and it didn't actually get approved at the executive subcommittee's conference call in January, but it still was under their aegis. Now it has gone out to them by e mail and they have until Friday to comment.
MS. MAYS: Here is what I suggest. You are sitting right next to Eugene and Eugene is doing the paragraph. So, if you want that in there, talk to Eugene, and then word craft -- I like the word craft. I want to leave word smithing alone, because it has gotten to the point it has negative connotations to me. Nancy used the words, word crafting. So, I will use that until I hate that.
MR. LOCALIO: Do you agree that the letter of February 15 is the appropriate vehicle for that particular phrase?
MS. GREENBERG: What phrase?
MS. MAYS: I think it is one of the possible ones. Since it is going so quickly, it could be a good one.
MR. LOCALIO: The phrase, for clarification, could be some hint that cutting the sample size of the National Health Interview Survey, for example, would be detrimental to the goals of the NCHS.
MS. MAYS: All right, it got quiet in here. That means it is time to wrap it up. I am going to try --
MS. CARTER-POKRAS: I just had a question because we do have so many recommendations and I didn't know whether it would be helpful to just take a quick look at each of the sections or 10 sections. You could pull one recommendation from each of these sections.
Are there any that you want to move forward? Yes or no? Then just go to the next section. Just do it section by section, because like the American Indians, there are a lot of infrastructure ones in that one. That particular section really doesn't have to do with data collection. It is kind of built into the rest of it. I don't know if that is an easy way to get the language.
MS. MAYS: Here is what I would suggest. It is just to facilitate. So, people can clearly say no, believe me.
What I would like to do is make sure that we are clear on -- we get the letter through and that we have maybe this series of recommendations that are here now, and then that is a done deal.
Then, what we do is that we give the committee, through some process that Jim and Marjorie are going to come up with -- because I can't do that, I don't know how to quite do that yet -- but some process by which we will then take the rest of the recommendations and, as a subcommittee, work through them.
I think that is probably going to mean two things. One, we can do it by e mail, and two, which I have to get to near the end of this, is some additional hearings we are going to have.
Then, at that hearing, maybe what we could do is have additional time to actually work on this material.
What we then do is come forth with a kind of, what is the goal we are trying to achieve, here is the problem and here is the mechanism. I have got to learn now, what the little format is, and then to understand the difference between whether we are requesting, urging, mandating.
I think if we are mandating, we have to be prepared that there has to be a major reason to do that. Mandating puts it into the category of regulatory. Urging is in the category of, you already have it and we need to pay attention again.
Then there is a category, probably, of some new policy, which that then is something that we want to have partners like the Data Council to receive it and really push it along.
So, I think we haven't had the benefit of that kind of discussion yet, and it would probably be premature to do it for the rest.
Now, other people, if you want to go through the rest of them, we can. I just feel we have come up with what I think are the biggies and that we ought to kind of like stick with those and then work on the rest.
I think it is really going to take, and the committee will benefit from, having a discussion. So, that is what I would suggest.
MR. SCANLON: It is part of the educational part.
MS. MAYS: Yes. I think where we are, to some extent, Olivia, is that we have several new people. I think it would be useful to let them be infused into this process as opposed to, we are going to rush it through.
It is a different timing, but I think it just might be useful to do that. I mean, they are great. They are making great contributions.
MR. LENGERICH: Russell and I were just trying to be quiet.
MS. MAYS: We could hear the scholarly voices, and he is quiet because he is writing.
MS. CARTER-POKRAS: That is why I am just trying to come up with a different way of approaching drafting the overall recommendations that are going forward.
Just one other comment I wanted to make regarding the draft letter. The very first paragraph of the draft letter, the last sentence, is actually verbatim from the charge of the subcommittee.
So, if the subcommittee wants to change the language of this, the very last sentence is verbatim from the charge of the committee.
So, if the subcommittee wants to change this, you should change your charge. I just want to say that the addition of the word, language, would change your charge.
MS. MAYS: Okay, what do we do to change our charge?
MS. GREENBERG: Someone wanted to include language there but you are saying that wasn't actually in our charge.
MS. CARTER-POKRAS: That wasn't in the charge. So, if you wanted to change the wording --
MS. MAYS: Is it as simple as we can just vote on changing the charge today?
MS. GREENBERG: You can.
MS. MAYS: All those in favor of adding language say aye, and all those opposed say nay. Can we just do that? I had no idea that we couldn't.
MS. GREENBERG: Yes, and then you can just report that tomorrow.
MS. CARTER-POKRAS: Just make sure that the internet has it.
MS. GREENBERG: Since you are talking about the first paragraph --
MS. MAYS: Wait, let me finish this. We have to do this officially, because it is a charter thing.
[Motion made and seconded.]
Okay, any discussion?
MS. GREENBERG: Actually, I think it has to be proposed and seconded by a member of the committee, not a staffer.
[Motion made and seconded.]
Is there any discussion? Hearing none, can I -- all those in favor of adding --
MR. BREEN: What are we adding?
MS. MAYS: We are adding the word language. Language is not part of our charge. So, all of those in favor, say aye.
[Voices heard in favor.]
Those opposed say nay. Any abstentions?
[No voices heard in opposition, or as abstentions.]
So, now we can put it in the letter, and do I have to report that tomorrow?
MS. GREENBERG: Report that you amended your charge to include that language.
MR. SCANLON: It will be on the record, then.
MS. GREENBERG: Then we will put that on the web site. Thank you, Olivia, for your institutional memory.
MS. MAYS: Yes, we have been working on it all this time. Somebody could come back and say, that wasn't in your charge. So, thank you. That is why I wanted to do it immediately. Did you have a comment you wanted to make, Marjorie?
MS. GREENBERG: Yes. I just thought there was kind of a leap here and I was going to recommend a little different language here.
You say, the severe inadequacies, whatever, were first discussed by the committee. I knew when its 15th anniversary conference was, but that was a little esoteric.
MS. MAYS: I had been reading so much that when I looked at what Olivia had written, I said okay.
MS. GREENBERG: You said, during the 1960s. I was going to say that instead of, since that time, because that is a long time since the 1960s, I would simply say, most recently, the NCVHS established the subcommittee on populations.
MS. MAYS: Because there is a whole history of that.
MS. GREENBERG: There have been a lot of subcommittees dealing with that. Most recently, it was this subcommittee.
MS. MAYS: That is good. Here is what I would like to do. Let's try and take the recommendations first. Nancy, I am going to walk through them, and please correct me. Well, maybe I should let you walk through them because you actually just worked with Edna. Can you walk through the recommendations?
MS. BREEN: All of them or just American Indian and Alaska Natives.
MS. MAYS: You are calling for them.
MS. GREENBERG: This is the whole group of them that Nancy suggested?
MS. MAYS: Yes, and we are going to decide that we agree upon them, and that is what we are presenting to go with the letter.
Then, what I would like to do is we will go back to the letter, any comments you want to make in the letter, we will fix that, and then what we will do is the paragraph for the other one. That is the plan.
MS. BREEN: The first one, I added a little bit of language after Edna and I talked about this. We decided to drop the infrastructure at this point altogether, because it is quite complicated, and simply to emphasize that --
MS. MAYS: Oh, wait, I am confused. We are going to actually have you start with number one, which is improve collection on race and ethnicity.
MS. BREEN: We want to say something like, we want to collect adequate samples to provide robust estimates for black, white, Hispanic, Asian, Pacific Islander -- I guess those are two groups.
MS. GREENBERG: They are not together any more.
MS. BREEN: Asian, Pacific Islander, Native Hawaiian and Native American. I actually didn't check with Edna, but I think this might be okay -- for these populations by age, gender and basic SES, which is three categories of education and three categories of poverty. Is that too much?
MS. MAYS: Can we go back to data collection on race and ethnicity.
MS. BREEN: And emphasizing that it is -- we do black and white well, we do pretty well with Hispanics, and we really need to improve the Asian, Pacific Islander, and American indian Alaska Native collection.
MS. MAYS: Suppose we make this number one: Improve the collection of data on race and ethnicity.
MS. GREENBERG: In surveys, are we talking about?
MS. BREEN: Just period. We don't want to limit it.
MR. SCANLON: Then you have to be careful where you go.
MS. MAYS: That is exactly what I was going to say, because it is broad, but improve the collection of health data on race and ethnicity and racial and ethnic groups.
MS. GREENBERG: In what? You have got to say where.
MS. MAYS: Just health data.
MS. GREENBERG: In all health data collected by the department, are you saying?
MS. BREEN: Only health data?
MS. MAYS: That is our charge. I don't think we can go beyond that.
MS. GREENBERG: Are we talking about survey data, programmatic data -- everything.
MS. MAYS: Are we getting in trouble again, Jim?
MR. SCANLON: I would differentiate. I would say a multi-pronged strategy, as being that it focused on survey, and each of these types of data requires different things. You can over-sample, cover these populations in survey and research, for administrative data there is another way.
MS. BEREK: Your use of the term, multi-pronged approach, I think, is all that we need to say.
MS. CARTER-POKRAS: If we get too detailed, it won't get through.
MR. SCANLON: You can say that, because then it looks like a sophisticated strategy. It says that you understand that surveys and research, there is a lot of discretion in what the agency can do. Administrative data is a little bit more complicated.
You run out of over-sampling and other strategies, ultimately, in all of these and you have to deal with special studies. I think those three kind of get you through.
You may not want to go into that much detailed, and just say multi-pronged.
MS. CARTER-POKRAS: You may want to look at page five of the summary. It talked about what the major needs or problems were. I don't know whether there is some language, some phrases, that could be pulled out.
The sample sizes for most minority groups remain very limited for many purposes with large HHS data systems, including the National Health Interview Survey. Alternatives to over-sampling, including targeted studies and using data from state vital statistics and risk behavior surveys are not sufficiently used.
So, we could rephrased that to say, should be used to help fulfill the national data function efforts, to support Healthy People 2010 and other initiatives.
That actually is pulled from the hearing, language from the hearing.
MS. GREENBERG: I think there is too much apple pie, sort of, and nobody knows what to do with it.
MR. LENGERICH: Multi-pronged with a set of bullets under it, surveys, program data, different categories.
MS. BREEN: Asian, Pacific Islander, American Indian and Alaska Native populations seem particularly -- we really need to work on those, collecting robust estimates from those groups?
MS. GREENBERG: When you are talking estimates, you are definitely talking surveys. You are not talking programmatic. That is why I asked that.
MS. BREEN: Take a stab right now? Is it okay to start with your statement, sample sizes for most minority groups remain very limited for many purposes, with large HHS data systems, including the National Health Interview Survey.
MS. BEREK: If you are talking sample sizes, that is just surveys, and that is one piece of the broader issue.
MS. GREENBERG: Exactly. I think first you need something like what Jim said, you need a multi-pronged, whatever it is, to improve the collection of data on race and ethnicity.
MS. CARTER-POKRAS: How about this, data for most minority groups remain very limited for many purposes, with large HHS data systems, including the HIS. Now, you are not saying sample sizes. You are saying data.
MS. GREENBERG: I am saying including HIS.
MS. CARTER-POKRAS: Say, with large HHS data systems.
MS. MAYS: Can I suggest a process, because I am really concerned we won't get through this, which is, there are like eight or nine of these.
So, the process could be, I get you in little groups to write each one, and then we come back and do it, or else, it is like we have to take a break, you write them and then come back.
Otherwise, if we do it like this, we are going to stay on this one for way too long, and I think we have -- at my count, we have eight of them, I think. We just need to process this a little differently.
Some of you are just, you have it, and it is like -- I think it is easier if we write them down and then move on.
MR. LENGERICH: This is a process question but big question, just today. We have held three hearings, one on data based data collection systems with the federal government, second is Alaska Natives American Indians, and the third is the state.
MS. MAYS: Remember, also, we have had vital statistics come in.
MR. LENGERICH: That is fine. I guess some of these other issues that we are trying to articulate here in bullets or something like that, we really haven't specifically held hearings upon, have we? Are we going to -- are there more hearings to come?
I guess I am remembering back to that conversation earlier. People were only wanting recommendations to come out of a report, which means they kind of want to see the background there. Are we over-stepping?
MS. MAYS: Almost everything that is in here has come from other hearings that may pre-date everybody sitting here. Oh, no, not everybody, the committee members, mainly.
For example, the territories were all developed from hearings. Some of the vital statistics are from much earlier presentations. A lot of this has been pulled together from having all the materials together.
MR. SCANLON: And some of it, I think you said you were sort of reviewing some of the earlier reports.
MS. MAYS: So, we are okay with that.
MR. LENGERICH: Let me ask a different question. What hearings do you anticipate in the future?
MS. MAYS: The three that we have talked about in the past is having one on language, and I think we can combine the language one with the API, if we want, but definitely having one on API. We have talked around SES and geocoding.
I haven't heard from the committee well enough whether or not they are feeling okay with the small presentations we have had on SES.
Also, given that HHS has done a lot on SES, it could be that we don't need a hearing. We just need to draw from them. I think geocoding might be good.
The Asian Pacific Islander is definite. In fact, I have a proposal to make about it at the committee today.
MS. GREENBERG: We could hold it in Hawaii; right?
MS. MAYS: No, hold it in Los Angeles. UCLA is going to have a meeting on Asian Pacific Islander health. It is going to be local, but still, in California, there will be a lot of people.
The people that I figured we would draw will either come from San Francisco or Hawaii anyway.
MS. GREENBERG: It would be great to piggy back on that.
MS. MAYS: I have asked them if that is okay, and they were fine with it. As a matter of fact, if we do it, they have a journal and they have indicated that, if we want, we can probably also work with them on pulling the presentations together to put it in a journal issue.
The conference is going to do a journal issue, and they will talk with us about doing that, too.
MS. GREENBERG: Do you know when the conference is planned for?
MS. MAYS: Mid-May. I was a little stunned, but they are trying to get it in this academic year. We get out in June. They don't have a date. I was trying before I left, what is the date, but it is mid-May.
It would probably make sense to do language at that meeting, but we may say, no, we don't want to do language at that meeting. We want to work, instead, on our reports.
I gave you a process. So, what would you like to do? You can be quiet and write your own or we can put you in groups. We want to achieve what we need done in time.
MR. LENGERICH: The goal, Vickie, would be to have a re-draft for the committee to look at?
MS. MAYS: I think that there are like eight different recommendations here, and it would be, let's get them written now, and then have them all done, and then finish it off. Otherwise, I don't think we can just keep discussing it as a whole group.
MS. GREENBERG: If people want to do what you propose, can we, while we are still a whole group, get Gene's paragraph or whatever for the NCHS letter?
MS. MAYS: Because it is short and sweet.
MR. LENGERICH: We don't know that yet.
MS. MAYS: You are right. Can you tell us -- two things. Eugene, where in the letter would you like to put it, and then read us what you have. Then, Russell, I am going to ask you the same thing after that. Where would you like to put it in and read it.
MR. LENGERICH: I would put this in between the last two paragraphs. I think that there will need to be some word smithing, and then this may actually get folded into the last paragraph as kind of a summary thing.
This is the concept. The population subcommittee has recently been holding hearings for the purpose of determining population based and administrative health data for non-English speaking populations. It needs work a little bit there.
Such data, for both states and the nation, are critical for eliminating health disparities, a major goal of Healthy People 2010.
Adequate funding for NCHS, a leader in the development of these data, is essential to address health disparities. The subcommittee will forward final reports and recommendations on these issues in the future.
MS. GREENBERG: That sounds pretty good to me.
MR. SCANLON: That points to future work.
MR. LENGERICH: And it can be melded into this last one which is also talking about additional resources, but I will let the crafters do that sort of thing.
MS. MAYS: Very good. Thank you very much. Nancy, do you have a comment?
MS. BREEN: Well, in the interest of efficiency and inspired by Gene, I have some wording for the first one. For the race and ethnicity --
MS. MAYS: Can you hold it? We have one more for the letter, and then we are going to be -- accomplished, we have accomplished thing number two. Okay, Russell.
MR. LOCALIO: I have some other minor edits, but I will focus on the one that I think is most important. This is the first page.
MS. GREENBERG: We are talking about the NCHS letter?
MS. MAYS: Yes, the NCVHS letter about NHIS.
MR. LOCALIO: Yes, dated February 15, first page, last paragraph. It is the second line from the bottom, where they are talking about the National Health Interview Survey.
Just before the sentence that begins, NCHS, I have added one sentence. A reduction in the sample size of NHIS will frustrate efforts to monitor the health of minorities, the disadvantaged and the disabled. You want to hit as many hot buttons as you can.
MS. MAYS: We are supposed to do that in terms of populations. So, very good, perfect. Then, the smaller edits that you have, if you also give those to Debbie -- all right, thank you very much.
We will definitely bring that paragraph and that small edit back tomorrow. Debbie, if you could like have the letter done, but just bold the edits?
MS. JACKSON: I was just going to type out the new sections. I don't have the letter in hard copy.
MS. MAYS: I have my laptop here, if I can power up. It might be here.
MS. GREENBERG: That sentence that Russell just gave us, I don't think we need to bring that to the committee.
MS. MAYS: Okay, then we just need the paragraph.
MS. GREENBERG: I think just the paragraph, because that interjects about the hearings and all that stuff.
MS. MAYS: Now, Nancy, you think you can do the first one?
MS. BREEN: I came up with some language. Let's see if it works for the committee. Employ a multi-pronged approach to obtain population-based data and robust survey estimates for Hispanics, blacks, whites, Asians, Pacific Islanders, American Indians and Alaska Natives.
MS. PISANO: We need to add Native Hawaiians, or other Pacific Islanders.
MS. MAYS: That is just surveys. Remember, when you do that, that is just surveys. We were trying to do it broadly.
MS. BREEN: But I said population-based data and robust survey estimates. When I am thinking of population-based data, I am thinking like the Medicare data base.
MS. GREENBERG: But people don't think that. I would make a more general statement.
MS. BREEN: Marjorie, can you write it down? Can you let me go on to the second one while you do that?
The second one, improve collection on primary race. That comes from number one. What else do we need in that?
MR. STEINWACHS: I think you need to define what primary race is.
MS. BREEN: I am sorry, I meant primary language. Number two is -- primary race is third. This one is primary language. It comes from number one also, but it is at several other places.
MS. GREENBERG: What are we talking about; language?
MS. BREEN: Yes, improve collection on primary language.
MS. CARTER-POKRAS: Do we want to use that 10 percent threshold?
MR. STEINWACHS: No, I think the suggestion was that we might suggest thresholds be considered, but what is primary language? Is that like self declared?
MS. MAYS: Is that like mother tongue or native language?
MS. GREENBERG: If a person's primary language is Croatian but they are perfectly fluid in English, that is a very different situation than if they can't deal with English.
MR. STEINWACHS: That is what I was trying to get at, a definition of primary language.
MS. MAYS: The opposite of that is linguistically isolated.
MS. GREENBERG: The idea is to get information to people that they can understand.
MR. STEINWACHS: Vickie, what is the concept?
MS. MAYS: The concept, actually, in terms of primary language would be that language which the individual communicates -- you have to get in the aspect of need, meaning that that is the language they need to communicate in, the primary language they use.
If I were bilingual and I could do either, it is like I am not the person that I think we are trying to focus on. The person we are trying to focus on -- monolingual, I don't know if that gets it. Usually when they say primary language, what they are saying is, that is the language with which the person has the greatest facility and capacity to both speak and understand.
That is kind of how we talk about it sometimes in California, because it means that you need to translate, because the concepts are difficult enough that the person won't get them in their broken English or something like that. So, that pushes a button for wherever we are.
MS. CARTER-POKRAS: We could also just say language. I know there was a lot of time and effort, during the state children's health insurance program regulation development, talking about which way we should go, primary language, or just say language or whatever.
There was a lot of movement toward not specifying what kind of language, because certain states specify different things in their legislation.
MS. MAYS: Suppose we just say language, which allows the person to be able to participate fully.
MR. LENGERICH: Choice or --
MS. MAYS: Whatever it is we are giving -- whether it is a matter of they are filling out a questionnaire or whatever, that it is a health visit, that they can participate fully, that allows the person access and ability to participate fully in a health care encounter. How does that sound, that allows them to --
MS. BREEN: Allows them to participate fully, and then just leave it.
MS. MAYS: Okay, participate fully. No, we have to say in what, to participate fully in the collection of data on their health.
MS. GREENBERG: Or in programs or circumstances --
MR. LENGERICH: In providing primary health --
MS. BEREK: I think in services. The question is, do we have anything to say about services.
MS. GREENBERG: You also want to collect this data so that you can appropriately provide services -- you can provide services to them in an appropriate way. It is not just collecting.
MS. BEREK: Does data collection programs work?
MS. GREENBERG: See, it is beyond that. Judy wants to collect this data so that she knows that, if they are going to provide services to this population, they had better have people who can speak their language.
MS. MAYS: That is why I said things like access -- how about the health encounter. We leave the care out, the health encounter. That means it can be a survey --
MR. LENGERICH: Communicate effectively about their health and health care needs -- are you talking about effective communication.
MS. MAYS: You are even talking about so they can understand consent forms.
MS. GREENBERG: And issues of privacy.
MS. BREEN: What we need to know to better provide services.
MS. MAYS: You are an anthropologist by training. Maybe you can like figure this one out, because I want to move on to the next one. Otherwise, we won't get them done.
Improve collection on primary race.
MR. STEINWACHS: Primary race is defined as?
MS. CARTER-POKRAS: It is not improve. It is to support continuing collection of primary race as a means for bridging.
MR. LOCALIO: Couldn't you collect it anyway, Olivia, and not report it?
MS. CARTER-POKRAS: OMB doesn't even want them to collect it.
MR. LOCALIO: We can collect anything, can't we, as long as we report --
MS. CARTER-POKRAS: The standards are for collection and reporting.
MR. LENGERICH: We collect all sorts of ethnic categories.
MS. CARTER-POKRAS: Those are fine. Those are minimum standards.
MR. LENGERICH: No, I mean things like NHIS where they collect Cape Verdian, Egyptian, and so on.
MS. CARTER-POKRAS: That is all right because that is in support of their recommendation that is contained in their standards, to collect more detail.
To collect information, forcing people to collect only one race goes against the principles of allowing people to self report more than one race. That is why OMB is reading this right now.
MR. SCANLON: You are mixing the problem with the solution. I think you have to say there is some threat to the continuity of our health interview survey if the method is changed.
MS. CARTER-POKRAS: So, you would start with a statement of the problem.
MR. SCANLON: And then you say HHS should --
MR. HITCHCOCK: I think we still have white, black and other on the HIS. There are a lot of things collected on the HIS that we don't publish, and there are different ways to do this.
I think if you identify the problem and say that HHS should work with OMB to develop --
MS. CARTER-POKRAS: The National Committee on Vital and Health Statistics has become aware that the National Health Interview Survey may not be allowed to continue collection of data on primary race.
MS. MAYS: You know what? I am not comfortable saying that until I know it for a fact. From what I can see around the table, buzzing around this table, unless we were to reach somebody -- and Sondik is gone -- I am not comfortable saying it directly about NHIS as much as saying, what the problem is, if this kind of data is not collected over time --
MS. GREENBERG: Did anyone collect that between NHIS?
MS. CARTER-POKRAS: NHIS has been collecting it since the early 1980s. When we were reviewing the federal standards for racial ethnic data, HIS was one of the very, very few that was doing it. Actually, their data is part of what helped convince OMB.
MS. MAYS: Does it still make the case? Does it reach a threshold?
MS. GREENBERG: I think it is important to emphasize, yes.
MR. LENGERICH: Is it too detailed? Is the Secretary going to care about -- language, I can see making a case for that, but going into some sort of bureaucratic OMB guidelines --
MS. MAYS: I think the problem is that, if you say that it is important, the committee feels that it is important to continue the process previously available to collect self identification of primary race, in order to continue -- something. That is as far as I could get it.
MR. STEINWACHS: In order to continue to examine trends.
MS. MAYS: In order to continue to examine trends.
MR. LENGERICH: I think it is also the health disparity issue, to accurately monitor changes and trends.
MS. GREENBERG: Monitor trends in health disparities?
MS. MAYS: Yes, okay, that is number three. Now, number four.
MS. HUERTIN-ROBERTS: Can I just ask what happened to number two?
MS. BREEN: I am writing it.
MS. MAYS: Translate -- I don't have this down. It comes from number nine. Nancy, I have translation of consent forms into Spanish. What is the suggestion?
MS. BREEN: Just to translate consent forms and surveys into Spanish, minimally, and other languages as appropriate.
MS. MAYS: Let's stop there. Do we want to just say that the translation of -- is it just consent forms and surveys or are we concerned about --
MS. CARTER-POKRAS: The department's data collection.
MS. BREEN: All appropriate documents.
MS. MAYS: The translation of all appropriate documents involved in the collection of data from racial ethnic groups.
MS. BEREK: It is language. I can take you to Brooklyn. There are a lot of white people who don't speak a word of English.
MS. MAYS: That is what I was just going to say. So, let's do it simply, translation of all relevant documents necessary to the collection of data on population health for -- what did you call the population -- language something, it was a great term.
MS. BEREK: Limited English proficiency, LEP, and it is the term the department uses.
MS. MAYS: So, that one is done. Number five.
MR. LENGERICH: Do you want to say anything about thresholds in that?
MS. MAYS: It is important that standards -- oh, standards are bad here.
MR. HITCHCOCK: We are saying as appropriate; right?
MS. MAYS: Somebody has to develop what this threshold would be. So, I think that is what they were suggesting.
This should be done to capture as widely as possible individuals who are LEP.
Practical means that they could spend a dime. Practical is hard. Possible pushes you to think creatively about different mechanisms to do it.
MR. STEINWACHS: This gets back to this question of, I think I am going to become more educated by the hearings in the future, which may enable me to add specificity to these kinds of recommendations.
I think we are kind of walking a thin line between getting the issue on the table, but not being specific enough, because I am not educated enough to know how it is.
MS. MAYS: What we will do is just leave it as the first one, which is just pure translation and leave it at that. We won't start doing thresholds yet.
MS. GREENBERG: Do you want to hear how I wrote this first one?
MS. MAYS: Oh, good, okay.
MS. GREENBERG: Employ a multi-pronged approach to obtain improved data on racial and ethnic populations in programmatic, administrative and survey data supported by the department.
Whereas, current systems do reasonably well in collecting data on the white and black and, to a lesser extent, Hispanic populations, information is seriously inadequate on the Asian, Hawaiian and other Pacific Islander, and American Indian and Alaska Native populations.
MS. MAYS: Marjorie, can I say one thing? When you say it is okay in terms of the blacks, there was like an article in HAPA written by David Williams and other people who are like complaining, because it is okay to ask African American, but blacks actually is broader.
If we say African Americans, we will get ourselves out of a little hot water.
MS. GREENBERG: So, reasonably well on white and African American. Then we don't mention the others.
MS. MAYS: The problem is that, because you say black, you can't tell what they are. There actually was a push to change that category so that, under blacks, you could also say what you were.
MS. BREEN: Vickie, what percentage of the black population is African American? Are we essentially collecting data on African Americans when we collect data on blacks in this country?
MS. MAYS: I don't know nationally. I know regionally, like if you are in New York and you say you are black, the African American could be the smallest group in there.
If you say it in California, it is really going to more likely -- well, it depends. There are parts of Los Angeles. The way we teach it is that it really depends on geographically where you are, who it is.
I won't hold this up for that. Just realize that you could get letters of complaint on that.
MS. GREENBERG: If we say African American, it will come out -- I think you need to say white and black. Think about the white population, too. I mean, you are getting at that a little bit with language.
MS. MAYS: We will let it go, but we are going to get complaints.
MS. HUERTIN-ROBERTS: If I could just suggest that we use the same terminology as the OMB standards, and then you are safe, because millions of dollars went into this research and they found that it varies by age and that the older population --
MS. MAYS: I am fine with it. I can handle it. I know that we are going to get a complaint --
MS. GREENBERG: I said reasonably well. I didn't say it does great. Otherwise, you could leave out that sentence entirely.
MR. HITCHCOCK: It is fine, Marjorie, let's go.
MR. HITCHCOCK: We can develop it a lot further later.
MS. MAYS: We are going to do it later. So, we have gone one done, we have got two.
MS. BREEN: Two, improve collection of data on language required to allow full participation of all ethnic populations in health communications.
MS. MAYS: I like that. Three is about primary race. Did we decide on that one?
MS. BREEN: She has here, support the continuing collection of data on primary race in order to examine trends in health disparities. That was the last conversation.
MS. GREENBERG: Are you saying in surveys?
MS. BREEN: No.
MR. HITCHCOCK: I don't understand what the alternative is if you don't.
MR. LENGERICH: You might as well say in surveys because it is the only place where primary race exists.
MS. BREEN: The clinical setting --
MS. CARTER-POKRAS: In the clinical setting they wouldn't do that. What race do you really identify with, I mean, before you get your health care. Probably now.
MS. MAYS: Dale raised a question. Do we need a rationale as to why this is important?
MS. GREENBERG: I think you need a sentence, this information is needed --
MS. BEREK: She said it. Didn't you read the sentence? In order to monitor trends.
MR. HITCHCOCK: The issue is around why is primary race an issue. If it wasn't for OMB, this would not be an issue at all. We would all be asking primary race; right?
MR. STEINWACHS: Not necessarily.
MR. HITCHCOCK: It wouldn't be?
MR. STEINWACHS: Because OMB changed the standard, that is the reason.
MS. BEREK: Could you say something about a transition between the old standard and the new standard. The transition between the old standard, if we don't continue to collect primary race, we will lose continuity.
MS. MAYS: That was your sentence.
MS. BREEN: To transition --
MS. BEREK: Oh, dear, I can never say the same thing twice.
MS. MAYS: An approximation.
MS. BEREK: To continue to collect primary race data in surveys to bridge the transition between the old data collection and the new data collection, so we can continue to monitor trends.
MR. HITCHCOCK: And mixed race reporting, something like that.
MS. MAYS: Multi-race. Can we get to five here? We are in the home stretch. Primary race is three, four is the translation. Five is -- oh, this is where we went to the Native American stuff. Five was, hearings suggested all of the groups, the need is greatest, funding the least, area where it needs to be done. So, it is funding technical assistance comparable to DOD.
MS. BREEN: We were going to drop that.
MS. MAYS: So, the next three were actually pieces of that. I think the rule of three in articles and stuff -- usually what we teach is no more than three concepts.
MR. STEINWACHS: Most people can't hold more than three ideas in their head at one time.
MS. MAYS: There is actually research on that. So, those are the ones that we will take in.
MR. STEINWACHS: What about contextual variables? We talked about those. We talked about regional data centers, to a certain extent, and community HANES.
MS. BREEN: I thought you said the language we had in here was fine.
MS. GREENBERG: What are you doing about the American Indian and Alaska Native?
MS. BREEN: Putting them in one. You wrote it.
MS. GREENBERG: Okay, so you are not putting these other ones in.
MS. MAYS: Marjorie, you are so good that you didn't even know you took care of those.
MS. BREEN: We are adding into the text of the letter that they will be getting more recommendations from us on the areas of translation, Healthy People 2010, American Indian Alaska Native data, territories --
MS. MAYS: We should add it where we say that we intend to have other hearings. So, we will add it in that section.
MS. BEREK: You dropped all the topics that you had in your letter, so they will know you are thinking more broadly.
MS. GREENBERG: So, you are going to do one on contextual data?
MS. BREEN: I think you were just going to lift the language.
MS. MAYS: It is number 41 and number 54.
MS. GREENBERG: It just needs to be put as a recommendation. The regional data center seems to be a little bit out of left field.
MR. LENGERICH: Yes, I would drop that.
MS. MAYS: Let's see, we are not doing 41?
MS. GREENBERG: Yes, 41, but 54 doesn't seem to be -- it seems to be a little out of left field.
MS. MAYS: Are we doing 41 the way it is written?
MS. GREENBERG: No, I think it needs to be more of a recommendation.
MS. MAYS: Okay, so let's look at 41. HHS should increase NIH and CDC, as well as securing funding for additional research activities on Native American's -- is that the one?
MS. GREENBERG: It starts with, where possible, but it is a statement. It needs to be a recommendation.
MS. BREEN: We could say, we encourage the inclusion --
MS. GREENBERG: Just say, we encourage the inclusion of contextual variables or the linkage to data sets through geocoding, which can provide greater insights into the structural contributions to health disparities.
MS. MAYS: So, we are taking this as it is?
MS. GREENBERG: I just made it into a recommendation, rather than a statement.
MS. MAYS: Can you say it again?
MS. GREENBERG: We encourage the inclusion of contextual variables, or the linkage to data sets, through other data sets, I guess, through geocoding, which can provide greater insights into the structural contributions to health disparities.
MR. LENGERICH: Or to gain greater insights.
MS. GREENBERG: In order to gain greater insights.
MR. LENGERICH: I have got two things here. One is, I think contextual variables --
MS. GREENBERG: They won't know what you are talking about.
MR. LENGERICH: You need a such as, dot, dot, dot, and that is what I would like to hear. Do we mean SES?
MR. LOCALIO: I have written it. I don't like what I call jargon. We encourage the inclusion of data on the economic and social environment of individuals, or the linkage via geocoding of person level data to appropriate area level data, to provide greater insights into the structural and environmental causes of health disparities.
MS. MAYS: Thank you very much.
MR. LENGERICH: Via linkage, could geographically reference data.
MR. LOCALIO: Why not just say linkage of person level data to appropriate area level data.
MS. MAYS: Okay. Dale, you had?
MR. HITCHCOCK: What about regional data centers?
MR. LENGERICH: That doesn't really fit in. That is really access.
MS. BREEN: The way it fits in, if you have access to these regional data centers, you can have access to the confidential data, and you can have access to these tiny samples of small populations.
Now, whether you can reasonably analyze them is another question, but that would be the idea, and that is how it is linked to health disparities.
MS. CARTER-POKRAS: Evidently, there are also some issues that are coming up in NCHS data, that there is a lot of the data that NCHS is going to be releasing from NHANES, you are going to actually have to either request to have a data set created for you so that you can analyze it back home, or you will have to physically go there to analyze it yourself. It is a confidentiality and privacy concern.
MS. MAYS: Do we want to do this last one? Then there is one more. Dale, what was the last one you had?
MR. HITCHCOCK: The community HANES?
MS. MAYS: Do we want to say something about the community HANES?
MS. BREEN: What would we say?
MR. HITCHCOCK: Encourage its development, basically, encourage its development and use in order to target the populations in limited geographic areas, or something like that.
MS. MAYS: Do we want to call it the community HANES, or do we want to encourage --
MS. BEREK: Target smaller area focused studies. Raynard Kingston(?), at one of the hearings, was very eloquent about this.
MS. CARTER-POKRAS: He called it a defined population, defined population HANES.
MS. BEREK: I don't know if we need to say HANES at all.
MS. CARTER-POKRAS: Population surveys.
MS. MAYS: If we say HANES, we may cut it short. NIH may want to fund some of these things. Support the development of -- what was it?
MS. BEREK: I think the idea was, I think they used the word targeted and focused and small area, rather than national.
MS. MAYS: Support the development of targeted, focused, small area studies that can increase our capacity to learn about health disparities in small populations.
Now I see what she means. If she looks over at me and asks me to say it again, I can't.
MS. CARTER-POKRAS: There is one here on page seven of the abbreviated version that may get at some of what we are talking about. Number 22, this is the same one. There may be a phrase or a word or two that you can take from this. Page seven, number 22.
MS. MAYS: In order to provide health data on racial and ethnic groups, whose numbers are too small in national data collection for meaningful analysis, support state vital statistics, small area geographic studies, and other targeted studies to supplement national data collection efforts.
MS. BEREK: I would put the first sentence of this behind your sentence, after it, to support. Then you want to do the, it gives you more justification.
MR. LENGERICH: Why don't you read the sentence out loud. You lost us.
MS. BREEN: What I have is, support the development of targeted, focused, small area studies that could increase our capacity to learn about health disparities in small populations.
MS. BEREK: Then here it would say, by providing health data on race ethnicity -- forget it, just leave it.
MS. CARTER-POKRAS: The question that I had is whether we want to have something other than the targeted studies, whether there is something else from here, like supporting state vital statistics.
MS. MAYS: I think vital statistics takes us to a whole other thing.
MR. LENGERICH: I think on this one, now, are we not recommending that we do a small study in a particular Laotian population in Philadelphia and Los Angeles? Would that be ruled out because those are too far apart?
MS. MAYS: No.
MR. LENGERICH: So, it is really small area or small populations, either one or the other.
MS. MAYS: They could do them all.
MR. LENGERICH: I think the way we had it stated, we were stringing them all together. So, therefore --
MS. MAYS: I see. It should be or.
MR. LENGERICH: Or small populations.
MS. MAYS: Small area or small populations.
MR. BEREK: Focused small area or population studies.
MS. BREEN: You have small area. Do you want small area and populations?
MR. LENGERICH: I would say small geographic area or a targeted population.
MR. HITCHCOCK: I would say targeted. Hawaii, for instance, Hawaii doesn't really fall into small area or small population.
MS. BREEN: Okay, so take it from the top, targeted, focused, small, geographic, what do you want in there?
MS. MAYS: It was targeted -- small --
MR. LENGERICH: Studies targeted by population or geographic area, something like that.
MS. MAYS: All right, let me go through a few things that we will need to do by -- first of all, let me say thank you very much. You have done very well in terms of, I didn't think we were going to get the letter out. So, I really appreciate everybody hanging in here for this.
We have a request from the FDA to comment on the issue of, I think it is the data collection of race and ethnicity in clinical trials.
It is due in March. I think it is due in March. So, Audrey was going to do a draft response. I have to see if she is still going to do that.
If not, we will look at it and we will make a decision about whether or not we can also handle that. That is number one.
Number two, I will send you, again, the population report. You need it by e mail, those of you who don't have it. You need it by e mail.
We are going to set up a work structure of phone calls and hearings. I would like to be able to finish this report in the sense of really going through it and discussing the report, and then go back to all those other recommendations.
So, we are going to do it the other way this time. We are going to do it the real way, which is that we are going to do a report and, from the report, should come a set of recommendations.
We may be able to have the American Indian -- I will find out -- the outside expert who was going to do it if he had more time, might be able to do it and, if so, I said I wanted it in April, so that we could then have it finished by June.
So, I will ask the person if he still wants to do it, and I would say that that is all that we could handle, if we also included having a hearing in May in Los Angeles.
So, questions? Concerns?
[Whereupon, the meeting was adjourned.]