[This Transcript is Unedited]
Hubert H. Humphrey Building
Room 325A
200 Independence Avenue, S.W.
Washington, D.C. 20201
TABLE OF CONTENTS
Agenda Item: Call to Order and Introductions - Dr. Mays
DR. MAYS: Why don't we get started, and let's start with introductions. Bob, let's start with you.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health and chair of the Quality Workgroup.
MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CDC, and executive secretary to the committee.
MS. HAYNES: Susan Haynes, science advisor in the Office on Women's Health here in HHS and I just passed out to you -- [inaudible] -- mortality chart book that just came out today, it's out and it shows health indicators by sex and the five racial groups by state with the most recent data that we have.
DR. MAYS: I think this may be what we had to provide testimony that it was coming in our meeting in Philadelphia, what's your name, Kate Brett(?)?
MS. HAYNES: This is Kate Brett in our project, right, and we actually have, it's been on the internet but we actually put it in book form and it ranks every state for every indicator from one to 50 so rather then ranking the state as a whole which is what the National Women's Health Law Center Project did, I don't know if you've seen that report, we just ranked the indicators so that in most cases the states have at least one thing they're okay in.
PARTICIPANT: So there's no overall ranking --
MS. HAYNES: There's no overall ranking but you can sort of tell where the states are ranked if they have a lot of high scores.
DR. MAYS: Do you have enough of those that we can hand them out at the full committee?
MS. HAYNES: Well, I took some up there, a box up there a minute ago and gave it, but I don't know if, I think she has enough for the full committee to hand out tomorrow.
DR. MAYS: Gracie, can you make sure that we hand this out to the full committee? Thank you.
MS. HAYNES: And this is a CD-ROM that if you wanted to actually use the data, the full dataset that's on there. But we are getting some press calls from it today already, from Chicago Tribune and sources because this data by state is really popular, there's something to write about in each state, there's just a lot of meat and there's maps in the front for a few indicators and then as you can see the state ranks. And for most of the data it's three year averages when we can get it, especially for the risk factors so that we can report more data by racial ethnic groups and that's why we did it rather then having single years for the risk factors. And the mortality data is three year data as well. And we were really happy to have partnered with NCHS on this, putting this out, because it's hard to get all this data in one place, calculated the same way, adjusted the same standard, and all that.
DR. MAYS: Great, congratulations, I think that it's something that we had gotten testimony on so we're happy to see it, and what I'd like to do is to make sure that we share it tomorrow with the full committee so part of what we'll probably ask is if you have enough CD-ROMs also tomorrow to go around, is that possible or should we --
MS. GREENBERG: I'm not sure everyone would want a CD-ROM --
MS. HAYNES: I may not have enough to go around but I'll give you what I have.
DR. MAYS: Well, if you have a little flier that you have a CD-ROM then we'll give that to each person with a book.
PARTICIPANT: Or just a website so that people can look it up when it gets put on because that's the most portable of all.
MS. GREENBERG: It looks like I should go back to the state of my birth.
MR. HITCHCOCK: Dale Hitchcock, staff to the Subcommittee on Populations, I'm from ASPE.
DR. VIGILANTE: Hi, Kevin Vigilante, I'm with Booz-Allen Hamilton, actually I'm from Rhode Island and I was very absorbed in the Rhode Island data.
MS. LUCAS: Jacqueline Lucas, National Center for Health Statistics, Division of Health Interview Statistics.
MS. POKER: Anna Poker from AHRQ, lead staff for the Quality Workgroup and staff for the NHII.
MS. PAISANO: Edna Paisano from Indian Health Service.
DR. KENNEDY: Cille Kennedy from ASPE.
MS. BURWELL: Audrey Burwell, Office of Minority Health and lead staff.
DR. MAYS: Vickie Mays.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, staff to the committee.
DR. EDINGER: Stan Edinger, AHRQ.
DR. MAYS: Okay, and Russell, just say your name.
MR. LOCALIO: I'm Russell Localio from University of Pennsylvania and I'm a member of the subcommittee.
PARTICIPANT: Anyone on the phone?
MS. GRANT(?): This is Marian Grant from the -- [inaudible] --
DR. MAYS: Welcome, anybody else? Okay, thanks Marian.
Okay, we're going to switch the agenda around just a little bit because I want to accommodate some, we have people who want to multitask here so I want to accommodate that. So we're going to actually move the discussion of the process for the population report up as the first item and we've asked Jackie and unfortunately I guess we couldn't get Jennifer here today but we've asked them to be here so that we could talk about the process. And then the next that we'll follow that with is actually to talk about the discussion of the candidate recommendations from quality, what we'll actually do is discuss the process and I know that Bob wants to go to the meeting that starts at 4:30 and I think you're also going to that. So we'll make those switches so that you can do it and since we don't have Don Steinwachs who will talk about the mental health stuff but we'll kind of put that as our last agenda item --
MS. GREENBERG: And he was not able to participate by phone I guess?
Agenda Item: Process for the Population Report - Dr. Mays
DR. MAYS: No. In talking about the Population Report let me tell you where we are, what you've done, and what needs to be done, and a decision that we need to make. And Debbie by the time I end up with this, and you might want to start this now, I'm going to ask you to take us backwards, I want you to tell me if the meeting is whatever, November, about when you're going to send it out and about when we should have these drafts ready to go so that I can get people to kind of seriously see the short timeline there is.
MS. JACKSON: [Off microphone.]
DR. MAYS: So when we get to the end --
MS. GREENBERG: We're still in the first part of September, that's the good thing.
DR. MAYS: Good news will be how much work we have to do in the time we have to do it. Suzanne, can you introduce yourself?
DR. HEURTIN-ROBERTS: I'm Suzanne Heurtin-Roberts and I've been wandering around the building looking for this meeting, I thought we were up on the fourth floor, then I thought the main meeting was up on the 8th floor, I'm from the National Cancer Institute, I'm befuddled but I'll regroup.
MS. GREENBERG: Was the agenda emailed to you?
DR. HEURTIN-ROBERTS: It was but I don't think the room was on the agenda.
DR. MAYS: It wasn't because I also told somebody else about coming and there was no, the room wasn't on it either.
We also have somebody that just arrived, Dr. Chapa would you like to introduce yourself?
DR. CHAPA: Hi, I'm Teresa Chapa from the Office of Minority Health -- [inaudible] --
DR. MAYS: Okay, here's where we are with the Population Report. We put together a small subcommittee, the subcommittee got the last draft of the report which Susan Canaan helped to reorganize. We set out a set of instructions and different people, everybody was really good, thank you everybody that's on the small group because you actually did all the things I asked you to do, so I'm very thrilled. But we have to make two major decisions, one is we have to bring the comment period to a close and that is if there are any more comments that you have about everything except what we're calling the strategies it needs to be in there now. Part of what I keep getting is that people kind of throw a comment out and it's like it really needs to be that you take that comment and either make the change or that you put before the group exactly what the issue is. So that's my biggest concern at this point is that if people really do have comments we are happy to integrate them, but if you have thoughts, if you think that something is a problem, we're at a point now where the problem needs to be resolved.
I know that we wanted to beef up the section for example on geocoding and that was done. We wanted to beef up the section on privacy and confidentiality, that's done. So I think all of the outstanding areas that we thought needed --
MS. GREENBERG: I was going to say, where is Eugene, and he just walked in --
DR. MAYS: I just announced his issue. Join us and introduce yourselves and we'll keep going. Eugene I just talked about geocoding so that's why everybody looked to see where you were.
DR. LENGERICH: I'm Gene Lengerich from Penn State University and member of the subcommittee.
DR. MAYS: Identify with geocoding?
DR. STEUERLE: Gene Steuerle, I'm with The Urban Institute.
DR. MAYS: Welcome. So I think that all of the issues that we as a group have talked about are in the report, now if there's anything that's outstanding, any other changes that need to be made, I'm setting a date and what you have to do is to really do it, or you have to let it go, that's the choice here. If you say you're too busy to correct it and it's not an egregious error then you have to let it go. So that's the message, Debbie, can I ask you because I want to do it backwards now so that we know how much time we have to work on this report. The meeting is --
MS. JACKSON: November 3 --
MS. GREENBERG: Actually it's 4 and 5 --
MS. JACKSON: So the first week in November, counting back --
DR. MAYS: The agenda books will go out when? Approximately?
MS. JACKSON: Well, the agenda books will go out about the last week in October in preparation for that so the materials need to be in the book by October 18th, 19th, 20th we start compiling material for the book. That's three weeks out.
DR. MAYS: So we should be finished by October, let's shoot for, I'm not looking at a calendar but let's shoot for, we should be finished by October 18th and finished means that it has to get, can we back up again, at what point would we like it to go to the executive committee?
MS. JACKSON: The first part of October would be ideal to give them a week to look at a report. We've given the committees three or four days sometimes to look at letters, but looking at a report for the first time they really need a week and a half.
DR. MAYS: So this is the most generous deadlines of all, what we would say is we have a month to finish this report. So if there are any outstanding comments, and I think what we should do is send an email so that I can make sure that everybody who's not here is clear that if there are any additional concerns, issues, anything, you have, what's today's date, September 1st, and then there's a holiday, what's the week after that, it would be, what's a week from Monday --
MS. GREENBERG: The 6th so the 13th.
DR. MAYS: So you have that Friday before so it's like the 10th, so at the latest it's September 10th. Hearing that after that I'm going to be really clear that then the ability to pull us off track with major concerns is going to be a problem.
MS. GREENBERG: Now if you're giving people until the 10th and are we still planning to have a writer?
DR. MAYS: Yes, I'm going to discuss that but I'm just trying now to make sure that --
MS. GREENBERG: If you want to get something to the executive subcommittee by the first week in October, whatever will appear as a draft report obviously has to be reviewed by the subcommittee --
DR. MAYS: I'm willing to cut the timeline short, I had gotten comments from almost everyone, the only I think areas that I think we still probably need to deal with is any accuracy issues in terms of NCHS, so I think, and I've gotten a draft from Jackie and I think maybe probably Jackie and Jennifer are at this, I mean we're probably at the last stage for Jackie and Jennifer to make comments. I think everybody else really has so I could cut that timeline back but I just understand that Jennifer is out. When Jennifer due back?
MS. JACKSON: She's on leave until the 2nd.
DR. MAYS: Okay, she's on leave until the 2nd --
MS. GREENBERG: Which is tomorrow.
MS. JACKSON: Maybe through the 2nd --
DR. MAYS: So my suggestion would be Jackie do you think it's possible for you to be able to, I'm happy to send an email also, do you think it's possible for you to have some time with Jennifer when she first comes back?
MS. LUCAS: I'm more then willing to make the time, I think it's going to be depending on her schedule, but I'll certainly make the effort.
DR. MAYS: Okay, alright, I'll also send an email because I know Jennifer has some things she wants to comment on but we just need her time wise to do it, so if she'll do it then it's fine but she may not also be aware and I think that that's what would be good, she may not be aware of the work that Jackie has done because Jackie sent it to me so it may be useful for her and Jackie to actually talk and then I think that does take care of --
MS. GREENBERG: So you've gotten comments from Jackie --
DR. MAYS: Yes.
MS. GREENBERG: And that's addressed some areas where there maybe were inaccuracies or whatever.
MS. LUCAS: See there were some places where I said I was going to give you the references and I wasn't sure that I'd given you all of them so I need to backtrack and --
DR. MAYS: Yeah, that kind of stuff we'll get but I just want to make sure that if the two of them I think coordinate with each other then we actually are fine.
MS. GREENBERG: Well a week from today would be nice to have any comments, right?
DR. MAYS: I'm fine with that, we're just talking about Jennifer's time so I'm fine with it. In the interim what I need to do and what I'd like to do again Jackie is to have you as one of the primary people to work with on this because I think in terms of where there are holes or where there's a reference I think you're the most likely to be able to quite quickly to be able to find those things, and you've gone through the report, did a great job, so I would like to work with you on pulling those together because I will have comments in a couple of ways and I think we can probably wrap that up.
MS. LUCAS: Okay, so you're going to send Jennifer an email?
DR. MAYS: Yes, I will send Jennifer an email, I'll try to actually send Jennifer an email tonight so that she has it when she gets back, telling her the timeframe and she can then respond.
MS. LUCAS: What I'll do is when I email her I'll send her the version that I inputted my comments in so that she can see them and --
DR. MAYS: Then I'll email her and give her the choice of I can send her every comment that I have gotten so she can see what the changes will be or she can just work with it.
The next thing is Nancy, Nancy's not here --
DR. HEURTIN-ROBERTS: I got an email saying she was getting ready to take the shuttle but I think I took the shuttle before she did --
DR. MAYS: There's a shuttle?
DR. HEURTIN-ROBERTS: There's a shuttle that takes us from our building to the Metro.
DR. MAYS: Because I was going to work with her about writing up the scope of work because she's actually worked with this before so I thought that that would be useful.
MS. GREENBERG: This is a scope of work for the writer?
DR. MAYS: Yes.
MS. GREENBERG: Whom we want to engage like in the next week?
DR. MAYS: The writer has already said she's waiting and willing, I've kept her apprised of it now, how quickly you can get a contract to her, she's willing to work --
MS. GREENBERG: But we obviously have to negotiate a rate with her, we can do it through, we can engage her through our logistical contractor, I mean we don't have to do a separate contract with her, that would be sometime in 2005 if that were the case. But we can engage her through Magna(?) but we need a scope of work obviously in order for her to give us a price and us to agree to it and as we discussed in the past we really need that because I don't think she's going to want to start working on it without any guarantee that we're going to pay her.
DR. MAYS: I agree. Nancy, welcome.
DR. BREEN: Thank you, I'm sorry I'm late.
DR. MAYS: That's okay, can you introduce yourself?
DR. BREEN: Nancy Breen, I'm from the National Cancer Institute.
DR. MAYS: And will you help me with the outline of the scope of work for the writer?
DR. BREEN: Sure, I'd be happy to do that.
MS. GREENBERG: This week?
DR. BREEN: I think we can do it this week, are you talking about Ann Roger, am I allowed to say a name? I mean it was someone, I think maybe you're talking about someone that we use pretty extensively in my division at the National Cancer Institute and we've been extremely happy with her so there's a scope of work there for her and I think we can write something up pretty easily.
MS. GREENBERG: And then you can also tell us whether, I mean what her rate, if you've already worked with her then I would assume you've already negotiated the rate with her, that would be a place for us to start.
DR. BREEN: Sure.
MS. GREENBERG: Which is good, as opposed to someone who hasn't worked with us --
DR. MAYS: That's why I thought Nancy would be --
MS. GREENBERG: So this is possible but we've got to move it along.
MR. LOCALIO: I just wanted to make sure I and everyone understands the timeline and what we're reacting to. From what you said on September 10th we have to have to you all --
MS. GREENBERG: We've moved that up to the 8th.
MR. LOCALIO: Excuse me, September 8th, September 8th we have to have to you all edits.
DR. MAYS: Well, I have them from all of you with the exception of we just need to get Jennifer involved so I do have them.
MS. GREENBERG: The one person you're really waiting on is Jennifer, you've got things from everybody else.
MR. LOCALIO: What are we reacting to? In other words between today and the 8th, which is not, we don't have a document that we're reacting to?
DR. MAYS: There's the document we had before but let me tell you what the piece of work is for you to think about but I think again, the writer is better to help us in this. In your folder is an email from Susan Queen. One of the things that we do have to do something about is the fact we have 69 strategies, they have been reorganized in the sense of the overarching recommendations, part of the task in this was, Susan Queen was the person that was actually tasked to comment on them whether or not there was a different strategy, and these are her comments. I think probably the most efficient next step will be to work with the writer.
MR. LOCALIO: I have one other question, somebody kindly left on my plate --
DR. MAYS: Oh, that's me, I gave that to you.
MR. LOCALIO: Oh, okay, thank you. And to what extent do you want me to incorporate anything I can find out about these materials into anything that I provided you in the past?
DR. MAYS: That's for your November activity with --
MR. LOCALIO: Thank you.
DR. MAYS: We're not being mysterious, I just gave him some stuff about privacy and confidentiality.
So Susan has given us some suggestions about how to approach the strategies, I think that rather then us doing this it would be better for us to receive a streamlined set of strategies that the small group of individuals can work on with her and then get that out to the broader committee as opposed to doing it the other way because I don't think we efficiently would be able to do that.
MS. GREENBERG: You're getting a streamlined set of strategies from the writer?
DR. MAYS: Yes, based on the fact that we actually have input on approaches to do that, like for example Edna is going to look at them in terms of some suggestions that Susan has made so we do actually have some suggestions about how to do this. Also having some of our federal partners involved there are some of these strategies now which can get cut, when I say cut meaning some of this stuff has been done, some of this is not as neatly lined up with the department's mission anymore, and some of this we've sent letters off. So if it's something in which we've done it, we've sent letters already, we probably are going to pull them out of this, so I think that that will be very helpful.
Okay, any other questions? I think that this is best if I send an email and outline the whole process in the email, and then if you see any holes please respond to it. I find it very hard at the meeting to do anything in depth because we really have a short amount of time so I've started to try and do these things into task groups and let people who then get geared up stay focused on doing it.
MS. LUCAS: I just wanted to make sure there's no more recent draft then the one we had from April 20th --
DR. MAYS: No, I have the different comments but there's no, exactly, I'm trying to make sure before I keep sending out drafts out and everybody keeps responding to different drafts that I get one set of comments from everybody that's agreed upon and then we sit down and make the decisions about what's in and what's out, so that's why I didn't do yet another iteration.
Any questions, comments? Okay, thank you, thank you for the deadlines.
Agenda Item: Discussion of Candidate Recommendations from Quality - Dr. Mays, Mr. Hungate, and Ms. Poker
DR. MAYS: Okay, let's move up the discussion about quality. For those of you who have been, which meeting did we do it? Was it June? The June meeting the quality report was passed? I don't know anymore, it seems like it was a long time ago.
MR. HUNGATE: I think it was before that. One of the recent meetings.
DR. MAYS: One of the recent meetings as you're well aware of Quality came forth with its report --
MS. GREENBERG: It must have been March because we had the hearing right after the June meeting so obviously the report had already come out.
DR. MAYS: Okay, it was in March, yes, because we even discussed these at another point, you're right, it was in March the Quality group presented a report to the full committee. Quality has always worked, while it's a subgroup here Quality has always done its work through the full committee and so what that reflected was that in the full committee there, when you looked at the recommendations, there are different recommendations that seem to apply more or less to the subcommittees.
There are some candidate recommendations that are really aligned with population, there are four of them, Bob?
MR. HUNGATE: Four I think are most aligned, there are really five that are aligned but I think one of them is subsumed in your other activities already anyhow so it's not --
DR. MAYS: Do you want to talk a bit about the recommendations just so that people have some idea?
MR. HUNGATE: Sure. There were two recommendations, there are five that I think directly relate to the Populations Subcommittee. The first two relate to adequate benchmarking data for states and metropolitan areas on racial and ethnic subpopulations and that's really what you've been dealing with before so I don't think we need to talk about that one in the context of this report because I think you're already doing that so it's just kind of reinforcing that.
The second one is standards survey items. It says standardized currently inconsistent items that are used to report the same measure of quality and this tends to be survey. The Quality Workgroup is currently conducting hearings around the first eight recommendations, which primarily relate to administrative information and health care institutions and the recommendations, or candidate recommendations 11, 12, and 13 are all similar to that in that they relate to the administrative data that is taken on people during encounters with the health care system or enrollment in plans.
DR. MAYS: Do you want to just, I realize we have a couple of new people here --
MR. HUNGATE: I'll quickly read those three, because I think those are the ones where the coordination/ cooperation between the two organizations is most valid and most useful. And those are, number 11 was data on race and ethnicity of all enrollees, modify existing mechanisms for reporting race and ethnicity of subscribers and dependents on the HIPAA enrollment transaction. Since it's a transaction it's a HIPAA transaction that also involves standards and security content wise, and that's true of the others as well.
Recommendation number 12 is investigate how best to capture race and ethnicity on a standard provider transaction. 13 is modify existing mechanisms for reporting the primary language of both subscribers and dependents on the HIPAA enrollment transaction.
These recommendations came out of six years of testimony, none of which I personally heard, which has caused me some discomfort in trying to create a report that was an accurate reflection of what passed by. The thing that has also happened is things have changed a little bit over time and so these recommendations are candidate recommendations as opposed to full recommendations on the part of the committee. Those things most involving Populations I think necessarily must have the Populations, prioritization within your own activities, as to what should be worked on and what shouldn't. To me that's my sense of the process, that what Quality Workgroup has done is helped to focus here are some content things that have been sitting around percolating and to ask the question well, what do you want to do.
DR. MAYS: The recommendations when they went forth was with the notion that some of them would be brought for joint work between the particular subcommittee, of the five that were identified as being most relevant to us the first two, we've had enough testimony and we're writing this Report on Populations that I think that that's something to share with you as opposed to the need for hearings. But understand that the next three that he talked about, the last three that he talked about, those are somewhat complicated, Marjorie is probably the best person at the table in the sense of longevity with some of these issues about how long ago has this come up in terms of trying to get race and ethnicity and should it be collected at which point in the encounter, should it be required, I mean so there's a number of issues that come up. And this is where I think Populations has a contribution to make but it should not do this alone, this is when it is Populations, Quality, and to some extent Standards involved.
So what I want to do is to talk about the process, and I'm going to suggest a process and then I think we should discuss it, because tomorrow Bob has Quality and Quality needs to discuss it. I think first that this is a three subcommittee activity, it doesn't mean that it has to have the full three subcommittees but I think in terms of holding hearings on this issue it would be helpful if there is representation from Populations, Quality, and Standards.
The question for Populations should be the following, what is it that we would like to achieve, is there any specific population, organization, etc., that we have specific concerns about from kind of a populations side, what are the population issues, are there specific populations that the collection of this data would be either more difficult for, at risk, I mean those are the kinds of things I think we should be thinking about in this. And who do we think should be heard from on this issue so that in the context of organizing a hearing who do we want to make sure is contacted to provide testimony at the hearing.
So I think those are our questions that we would need to work on, Bob, and the suggestion would be that the hearing that we would have would be at least from the group's perspective, include Quality as well as Standards. Marjorie?
MS. GREENBERG: The approach that the Quality Workgroup has taken with the first eight or nine, whatever, was to have one hearing to kind of validate or explore the case, the business case for it or the value statement of why each of those eight recommendations, whether and why they should be pursued. And now they're having a second hearing mid-month with the standards people to try to find out well, if we wanted to go ahead with one or more of these as a firm recommendation how could your standard accommodate them.
Now is it necessary to still, I mean has the work that you've all done and is going to be in your report enough to make the value statement, or the case? I mean because one, I guess even your testimony is a little bit old, I mean one of the arguments about some of the other recommendations was well, this testimony was taken a number of years ago and we need to update it. Or is the purpose of this joint hearing to do what we're going to be doing on the 14th which is to explore with the standards groups how this could be accomplished. I mean given the recent recommendations from the IOM, the report you're going to be making, etc., do we need to have more testimony on what the value statement is, or are we now, is there enough out there now to really instead be engaging the National Uniform Billing Committee, the National Uniform Claim Committee, the HL7, X12, whatever, the people who are coming on the 14th to talk about the first eight on well, is this feasible or what are the problems with doing this from the point of view of implementation.
DR. MAYS: I'm going to comment and then I'm going to open it up. I would say that the business case is made in the sense of the IOM and the sense that the health plans have gone ahead, but what we don't know is the acceptability of asking these questions at what point in the process. I think for racial and ethnic minorities if you ask them when they're first enrolling in a plan the belief will be that there might be discrimination. I think if you ask people at other points to fill it out what's the extent to which maybe they will not fill it out. I mean I think what we don't know is the best practice of how to gather this data, or the education necessities that are there in order to have people participate so that we get the data at a high percentage.
We can learn that from talking to the health plans right now I think, and we also don't know if there are, what we don't know I think is also what to do with mixed race data --
MS. GREENBERG: With what?
DR. MAYS: Mixed race data, multi-race data, that's the other thing once it's collected. I mean there's some, and I don't know what's going to happen to the health plans but some people feel like well once the data is collected are they liable, are there certain ways in which the practice should be different. I mean I think there's some interesting issues here that I don't think that we have collected data on --
MS. GREENBERG: Depending on what the questions and the issues are that will obviously drive whom you're going to bring in.
DR. MAYS: Right. Let me let others comment on what they think would be necessary to gather at this point in time in order to have the outcome be that we could end up with these standards being put into place.
DR. BREEN: I don't have anything to add but I would like to reinforce what Vickie suggested because I know with the SEER program, the cancer registry program that NCI runs, there's been concerns on how to collect these data and there's been a diminution in the collect of those data, especially in California when they were having the Proposition, so I know Brenda who runs that program, Brenda Edwards, would very much like to know, to give some instruction to people on what would be best practices because they're feeling like they certainly don't want to offend anybody and they certainly want to deliver health care and there's certain things that they want to do and accomplish and so they're going to need to do this in a way that doesn't offend people or send them away or otherwise discourage them. So I think that question is key.
MS. GREENBERG: Well I know several years ago when we had the rather substantial hearing on this issue Janette Balls I remember in particular gave very good testimony about what type of educational and other processes the organizations she was with in Minneapolis followed in order to collect the information in a way that was acceptable and resulted in good quality data. Since then more health plans have tried, have seen the value of doing this, or have taken the step to try to do it so I think updating that and hearing from those groups would be very good. And that is, I don't know whether that could be done, well, that could be done probably in the same hearing that you also have the standards groups but it seems to be general agreement that sort of the value statement does not need to be made anymore which I would agree.
MR. HUNGATE: Comment, I'm not sure whether the specific content of these candidate recommendations is the same as they would now be framed listening to your discussion, I can't remember the term she used for cultural competence, things about economic situation of the individual, there are some things that may be important in risk adjustment from a qualitative measurement standpoint that also appear in this same content, so I'm not sure whether we correctly framed the candidate recommendations, whether they encompass all the issues that should be involved in population determinations. That's just an uncertainty on my part.
The other piece of that is the contrast between central collection through survey as opposed to being able to aggregate from administrative data and have the information be comparable, what are the strategies involved, what are the relative importances, how much is the strategy to stimulate health plans to do their own data collection in ways that let them recapitulate on the measurements such as are in here for their own population, to say how does my population compare to a state population, I'm just using this as an example. And so that's partly a strategic choice and I don't know how well we've talked through and articulated that part of it. You know that better then I, now maybe I'm just jumping into the deep lake and I should forget it but --
MS. GREENBERG: Well, obviously the Quality group has to agree whether they still want these candidate recommendations to be vetted or they want to change them, or they want to expand them and say these are the ones that were in the report but we also have these other issues. If you think it's going to offend people to ask them their race and ethnicity wait until you ask them their income, I mean there's just so much you can do in the administrative environment --
DR. MAYS: Especially if their income has anything to do with any kind of services, they might minimize it in order to, because you think later that it might impact services, so even in the surveys to try and get people's income is --
MS. GREENBERG: I remember a friend of mine in college who didn't come from a poor family but she told me they always wore old clothes when they went to the dentist but anyway, it always stayed with me. But of course if you're going to use it for purposes of care, I mean in a positive way for purposes of care, or use it for purposes of risk adjustment or whatever, it has to be on those people, you can't use survey data from some national or state source.
MR. HUNGATE: If you want culturally sensitive care you've got to have the culturally important information some place, and I think it drives you into the administrative corner sometimes, at least that's my sense. Now maybe it's enrollment, maybe it's not plain --
MS. GREENBERG: But then you have the issue that it's raised about enrollment. So I think a hearing around these issues would be useful --
DR. MAYS: I think there needs to be a discussion among the groups before we go to the level of a hearing, I was just going to say so I think a hearing is good but I think that for example the more you talked the more nervous I got and I mean this is like take me away from being the chair and put me back to being a minority in the health care system, I don't even know if I want to answer all the things you just said because I'm then afraid of the kind of reports that might be written and they end up stigmatizing, we don't do this, I mean that's what has happened in HIV and so you now have a whole field of stigma, it's just not the disease but it began to classify people around their behaviors and I could see the same thing happen in health care.
MR. HUNGATE: I think that's a limitation of claims data too because claims data is very directed toward the process of delivering care.
DR. MAYS: But see I think we'd have to think about if you collect the data maybe there needs to be some boundaries or something about how you can and can't use it. Eugene, Anna, Nancy, no, I'll turn to I saw over here, did you have your hand up? Okay, then Nancy, I'm sorry, I just realized I was going down one side. Did you have your hand up?
DR. VIGILANTE: Tentatively.
DR. LENGERICH: This is a question mostly I think for Bob or for the Quality Workgroup and that is a couple of your recommendations, candidate recommendations 11 and 12 had to do with enrollment of provider transaction. I guess the scope of that universe needs to be somehow defined particularly if you think about a hearing and who you would bring in. I guess one major division might be private versus public providers, Medicare, Medicaid --
DR. BREEN: Insurance you mean, insurance coverage?
DR. LENGERICH: By type of --
DR. BREEN: You said providers, do you mean insurance coverage?
DR. LENGERICH: Insurance coverage, yeah. So would you include all groups? Would that be the universe you would be seeking to get information from and be able to make recommendations?
MR. HUNGATE: That's been the approach so far.
MS. GREENBERG: John just returned and I think it's worth asking him because of his role with the IOM Committee, etc., whether, the question has now, is on the table about a possible hearing related to the recommendations about collecting race and ethnicity and primary language in enrollment or, now the question is about all the other issues that you might want to know in order to relate it to cultural competence and socioeconomic factors and all of that. Do you feel, I mean I know there was a recommendation in the IOM and made some recommendations and there seems to as we talked at the executive subcommittee we've made some progress in plans recognizing the value of this and even standards development organizations maybe recognizing they need some functionality to collect it. But do you think it makes sense to do a hearing just around those topics, race, ethnicity and language? Or should this be expanded? Because once it's expanded I mean you're really getting into much less chartered territory.
DR. LUMPKIN: Well, there's been a couple of development, there was the survey that was released by AHIP, American Health Insurance Plans, on collections and the survey showed that half of the plans are collecting race and ethnicity data in at least one of the product lines. There is I think continuous momentum for that which is not reflected in the SDO related to the 837 so the question is is how can we sort of kick things over. I know that United Health Plans is very interested in pushing the issue, particularly Reed Tuckson(?) --
MS. GREENBERG: Race ethnicity.
DR. LUMPKIN: Race and ethnicity.
MS. GREENBERG: And language or just --
DR. LUMPKIN: Not language, I haven't really heard much discussion about language.
DR. MAYS: See California language is a big issue and what you're seeing I think particularly in terms of LA CARE and a couple of others, it's very big on their agenda.
MS. GREENBERG: But that's already in here, the question I think is do we try to go ahead with a theory on what's in here or get into some of these other areas.
DR. MAYS: Well, the other area is --
MR. HUNGATE: I was the one that suggested broadening the scope a little bit and I'm not sure that's appropriate and I'm quite willing to back off that because I hear real complications coming through --
DR. MAYS: Well, let me just say I think the issue is we have sent forth things to the Secretary saying socioeconomic position is important. You have I think also said socioeconomic position is important. What we've done is we --
MR. HUNGATE: Not in here, not in here.
DR. MAYS: No, but before that, didn't Quality have, maybe --
MS. GREENBERG: Quality was never --
DR. MAYS: Maybe it's in the 21st Century --
DR. LUMPKIN: What we have tried to say that even with everything that's going on is it important enough to put it on the transaction code.
DR. MAYS: Well what to put on the transaction code? Because I think what we've done is when we bring up SES what we do, I mean socioeconomic position, we always focus on income, and what we're finding is in this environment things like how much education does a person have, can we establish their literacy level, I mean there are some other things which tie directly into what you would need to do. Can I write a prescription, how do I write the prescription, I mean that, there's a lot of discussion about those kinds of issues at least in California.
MS. GREENBERG: There's a recommendation going back to 1992, it was brought forward in the core data elements recommendations, so going back to 1996 recommending education, level of education, but it never went anywhere, I mean it went to the department but it never went anywhere other then that. That's the only, that wasn't from the Quality, I mean that was from the whole committee, that was before we even had a Quality Workgroup. There has been a recommendation and it hasn't been revisited and I don't think it was really --
MR. HUNGATE: It wasn't revisited here.
MS. GREENBERG: It wasn't revisited by Quality.
MR. HUNGATE: I was just listening to the other discussion and say well gee, I wonder we've framed it alright.
DR. MAYS: But what I don't' want to do is to sink this because it's like race, we have a chance I think for race and ethnicity and I think there's a lot of momentum in different places and I think if we are strategic it can work. I don't want to sink it though by like getting so broad that in the same, it may be that we need to do step by step and also it means that we can do it more timely because the race data, we know already who to call in, we know that there are health plans to call in, we know for example that the IOM, the case has been made --
MS. GREENBERG: And states are collecting it too so there's some functionality already in the transactions, I mean nobody is collecting this other stuff in administrator data.
DR. MAYS: It might be useful to think about let's start there, let's let this other stuff come up in the context of the hearing, let's wrap up the race piece, and then move to the next. We might be able to do language even with race.
MS. GREENBERG: Yeah, I think you could do language, I think you could do language.
DR. MAYS: We have a visitor.
D. CHAPA: I think language would be exceedingly helpful and it's not as intrusive and people wouldn't be so afraid, putting income, people sometimes don't want, I think there's a special -- [inaudible] -- earnings and so forth but language is a very important factor and a prime discussion for those practitioners -- particularly under Title Seven.
DR. LUMPKIN: I think that obviously supporting the recommendations from our IOM committee, I think language and socioeconomic position, are important indicators and ought to be collected, the question is is can we make the business case like we can for race and ethnicity data, and that's really where the challenge is and that's really where we reach the roadblock in dealing with the standard development organizations, which they're all about business, the business case, it's not about what's going to be nice to collect. And I think that we nee to clearly segment our recommendations so that they can be addressed by the SDO one at a time and make the case for each one of them on their own merit rather then trying to pull them all together.
DR. MAYS: Okay, let me get the people, Anna, you still want to comment?
MS. POKER: Yeah, I'm just trying to remember what I wanted to comment about. What I wanted to talk, I was so excited when you asked the first question what would we like to achieve because I think that would probably be the first question to ask here because if we know what we ant to achieve we'd know when to ask the questions. And hopefully if we can explain to the people why we're asking these questions we could get more honest feedback from them. And I mean that maybe in a naïve sense but also in a very true genuine sense, what is it that we want from this data, what do we want to accomplish from it. And once we kind of really identify that I think the rest might flow a little bit.
DR. MAYS: The reason I think that's so important is because I think once we tell people we want to collect that data my biggest concern is that their expectations of what can come from it may not be met and then you're going to get people feeling like well you asked me my race, don't you have something special for me now, so I think it's important. Nancy?
DR. BREEN: What I was going to say when I raised my hand was that I thought we should also collect language because I thought race and ethnicity was what Bob had mentioned that his committee had recommended --
MR. HUNGATE: And language.
DR. BREEN: Oh, you did recommend language too?
MS. GREENBERG: Those two.
DR. BREEN: But since then with this conversation I think it is important to collect some measure of socioeconomic position because what's happened historically in this country is that if you don't collect any measure of socioeconomic position an enormous amount of weight goes on to race and racial differences and it tends to confuse the issue more then explains it I think. And so I think from that point of view it's important to get some measure of socioeconomic position. I think much as I'd like to see income I don't think it's a very feasible measure, I think it's going to be tough to get from people and I think not only may people not be completely honest about their income but I don't think people track their income in the way that we'd like to have on these surveys, I don't think they could just have that off the top of their heads.
But I thought Vickie you made quite a good case for collecting education including a business case for collecting education because if people who are providing clinical services to people know more about the educational levels and background of their patients then they're going to be able to provide more appropriate services to them. So I also like the idea of collecting these bits of information, or presenting them to whoever is going to make the decision separately but I think I would go for education as a socioeconomic position measure but I really would hope we could get socioeconomic position as well as race and ethnicity and language.
And with those three things coming out of some sort of standardized way of collecting those and that's where quality and standards would come in, some kind of standardized way to collect all those things in our claims data that comes out of a million different places in the United States, we would be so much further ahead in terms of having a dataset that we could do something with then we are now today but it would be fabulous.
DR. VIGILANTE: Yeah, actually I was going to say very much what Nancy said, I think that highest level of educational attainment is a specific metric that we should collect, I think it's very important to collect socioeconomic position but recognizing the difficulties in collecting income and wealth data and getting it reliably is very problematic but level of educational attainment tracks very well to that and it also covers circumstances when people are retired and no longer have an income or one partner doesn't go to work anymore but may be a college grade, it gives you a better indication in a lot of ways of where people are in their socioeconomic position, as a surrogate measure.
The other thing is that the health disparity populations and the educational disparity populations map so closely and if you, and there seems to be, there is data emerging that actually education attainment may mediate its effects on health status, not just by the income effect but they may be a separate educational factor and so paradoxically it may be an educational intervention, better reading, writing, graduated from high school and college that actually improves health more then a medical intervention or access to care.
So I think we can't see these two things as separate because the intervention that we end up pursuing has to be as interdisciplinary or multi-factorial as people lives and at least by integrating health and education and collecting that data together I think would be a very, very important thing to do.
DR. MAYS: Audrey then Marjorie.
MS. BURWELL: I just wanted to comment that many of our letters and the IOM Reports and some of the testimony we've heard at hearings have indicated that we need to collect race ethnicity in a standardized way and many of the reports say use the OMB form or revised standards. So even though the movement is going on in the private sector they're collecting it in various different ways and we need to try to get a handle on that finding out what their barriers are to using the OMB standards and if in fact, I remember the states said we need to give them technical assistance in how to do this so I think that's very important.
In the background there's some legislation, I don't know exactly where it is, Senator Frist sponsored some legislation that would require language collection and also on the Democratic side there's pending legislation that would require language collection in addition to race ethnicity and socioeconomic, or they have status in the bills but position.
MS. GREENBERG: Collect it where?
MS. BURWELL: To require the collection and it's almost now where we can't really require that the private sector does, this legislation comes as close as I've ever seen to placing that requirement. I don't know whether it's on the enrollment or transaction if that's the question you're asking but it's getting closer to requiring standardized collection in accordance with OMB standards.
MS. GREENBERG: I totally agree with what Kevin and Nancy and everyone, and Audrey, what everyone said about education level, as I said I was involved 12, 14 years ago, whatever, in coming up with these recommendations and I support exactly what you all said. But the correlation between education level and health behaviors and health status and health seeking and all of that as well as the importance of explaining race ethnicity better. However, and I think I'm okay with it if we agree that we would do it in separate hearings because I do think if you start bringing education in with the race ethnicity which now we have built up some momentum and some experience and all of that we'll be right back to the drawing boards.
Now the only reason to do that is if, and I mean Nancy said something that gives me pause because I've heard, I mean others have said the same, and at one point I know CDC came out with guidance that said you were never to produce data that just showed race and ethnicity, you had to have some socioeconomic information as well. But unless you feel like actually getting race ethnicity without getting some socioeconomic factor such as education is worse then not getting it at all I would say you should go ahead and try to pursue the race ethnicity --
DR. VIGILANTE: I think it might be worse.
MS. GREENBERG: If it's worse then I'd say take it off the table because --
DR. VIGILANTE: I think it would be very misleading, alone, people draw the wrong conclusions, the wrong solutions.
DR. LUMPKIN: Well, it depends upon what you're looking at, if you're looking at health disparities I'll agree, but if you're looking at health care delivery disparities I disagree. When you adjust for socioeconomic status disparities based upon race and ethnicity still exist in health care delivery --
MS. GREENBERG: Well, even in health status I think but less they're mediated --
DR. VIGILANTE: To some extent they still --
DR. LUMPKIN: But where the business case then comes in is that where you have disparities and you now have increased attention on reducing those disparities, so that the outcome of that encounter becomes an issue for reimbursement, the health plans are looking at that to measure it, then you can make the case of putting that information on the transaction. Because the transaction is the people who are the keepers of that, everybody wants to get everything on the transaction and so how do you sort of cone that down and they do that by saying well what's the business case, what is involved with paying a bill for which do you need to know race and ethnicity, not whether or not it's important to collect, not whether or not it's important and that's when health plans start looking at paying for performance, they start looking at those kind of things and say okay, it makes business sense to put it on there. And so I think we really have to be clear for what purpose and what issue that we want to focus in on it --
DR. VIGILANTE: So it's not health disparity as much from your point of view.
MS. GREENBERG: What did you say, Kevin?
DR. VIGILANTE: It's not about health disparities so much as it is about health care delivery.
DR. LUMPKIN: I think that getting it on the 837 will be about health care disparities and that once we do that based upon health care disparities we will have much richer database to look at health disparities.
MS. GREENBERG: Yeah, then it's how you, I mean you don't make decisions necessarily but it's how you then evaluate or assess what is contributing to these disparities when obviously you need to bring in socioeconomic factors, etc. But I would say we're not at all close to getting any agreement to put education level on these transactions, maybe I'm wrong, and I'd say probably it could be maybe collected as part of an electronic record, I don't know, but we are closer to getting race ethnicity so if you say one requires the other then it's quite a different situation here.
DR. MAYS: We're going to take a couple other comments, what is very clear is we are not ready for the hearings much as we have to have a lot of discussion among ourselves. I think that the business case is made for race ethnicity, it's been great in terms of all the IOM cases and the research that has come out, and most of that in a funny kind of way is for health care, more so I think then anything else it's for health care. So it's like if we were to proceed and we're going to build on a foundation the foundation that we can build on I think the best is really in terms of health care.
I think that we need to discuss these other issues because I could give you an argument, for example, which is about education, educational attainment quite often for racial and ethnic minority groups doesn't work as well as you'd like it. People have a high school education and can't read, I mean it's like the inequity in the school is a big issue so I mean I made a note to myself that when we do this we need to talk to the Department of Education because they actually have some expertise in thinking about the complexity of these issues.
But what I think we need to do is clearly we need to set up a time when this group will have this discussion and that what we're going to do is to come up with what do we want to achieve, and what arena do we want to achieve it, do we have, these are the three things that were down there, do we have the business case. If we don't have the business case and it has to be made that's a different hearing then we have the business case and we can move ahead. So Suzanne and then Russell and then Susan.
DR. HEURTIN-ROBERTS: Well I'm not sure I have anything new to add after what we've all said but I do think it's worthwhile, I just want to weigh in, I do think it's worthwhile collecting the data on race and ethnicity alone although I agree it would be better if we had more data, more data is always better, because health disparities in populations are completely related to disparities in health care and I think that race and ethnicity are very important in understanding disparities in health care and how services are delivered --
DR. VIGILANTE: I don't think the data shows --
DR. HEURTIN-ROBERTS: I think it does.
DR. VIGILANTE: I think there's a relationship between access to health but it does not completely explain disparities, in other words so there is a very large factor that has nothing to do with access, there's a very large factor that has nothing to do with access that has a major impact on health disparities. So what I'm saying is if we're interested in health disparities, in actually improving population health, we have to be looking beyond just access, it was like the AHRQ presentation, the guy came, I forget his name, gave a great presentation from AHRQ on health disparities work. Not really anything about sort of, he was so focused on access it was okay, if we can solve this access problem we're going to eliminate health disparities and that's just not true.
MS. GREENBERG: Differential treatment, I mean that's also a health care issue, it's not just access.
DR. VIGILANTE: I mean access to the equal care.
DR. MAYS: Russell then Susan.
MR. LOCALIO: I may be repeating what's already been said before but I am not yet at the point that most people have been discussing because my concern is how can we be assured that the information we are collecting through administrative data are going to be accurate enough for anybody to make any use of it to do anything.
MS. GREENBERG: There have been some studies of this.
MR. LOCALIO: So even though it's part of the transaction I can just say, I can just see somebody saying oh, I have to fill this field number 32 in in order to get paid, it's blank now but in order to get paid it has to be filled in so I'll just put in something so that the claim can be paid. That happens all the time.
DR. BREEN: You've been reading Calvin and Hobbes haven't you.
MR. LOCALIO: No, I make a living working with data and I see this all the time. And so what I see here is nothing other then what I see all the time, missing data, incorrect data, and the problem is what do you do with it. One example, suppose you've got a particular racial or ethnic minority that comprises four percent of the population in an area and you're really interested in them and you have missing data on ten percent of the people in a particular health plan that serves that area. You're going to be in a real bind here because you don't know how many of that missing ten percent applies to the small minority group. If all the missing data came from the vast majority, the biggest groups, you wouldn't care but I'm so worried that you're going to have a selective non-response here that is going to be very dependent on the ethnic group you're trying to study. If that's the case I would say is it worth collecting or do you just give yourself a false sense of accuracy because it's on a transaction, part of a transaction or a form, it's on a form, or required.
MS. HAYNES: I sat on a socioeconomic status committee for the American Heart Association about six or seven years ago and they did a year and a half long study of socioeconomic indicators on disparities in different racial groups and what effect it had on heart disease mortality. And the recommendation that came out of the report that was to collect education rather then race per se to explain those difference. And when you teased out the data you could explain a lot of the racial differences by controlling for education. And they also looked into the reliability of education which is very good, income is very terrible, you have 30 percent non-response usually in surveys for income, so there's a lot of data on that, George Kaplan chaired the report --
DR. MAYS: There's an article, I think that may be one of the things --
MS. HAYNES: Yeah, lots of reports on this that presents the case for doing it and you hear reactions now for different racial groups that say it's not just black, it's low SES black, I'm a high SES black man, my group is not the one that we need to target. That response is now coming from the target populations that we're trying to get data collected on that I think from what I've heard that they want it collected too and so I think it's worth further discussion.
DR. MAYS: This is why I think we haven't, that the business case is a difficult one at this point for some of these areas like socioeconomic position. It's not that we don't want to do it --
MS. HAYNES: But they could save money if they knew it, if they could know that they only need to target on the low SES folks then, not the whole population.
DR. MAYS: Oh, I could see where that would be a problem, are you poor, then I need something more from you then I need from the others, my cousin who has a degree went in and they didn't ask them that.
MS. HAYNES: No, but I need to do more for you.
DR. MAYS: Okay, we're going to wrap this up, last two comments, Marjorie and then Bob has the last word.
MS. GREENBERG: I mean certainly Russell raises some valid questions so I know AHRQ has done some studies, there have been other studies that have shown that on race the data tracks pretty well, yes there's missing data, etc., certainly on black/white, I mean there are only five race categories anyway in OMB, five or six, ethnicity is more problematic. But just to be kind of cynical I guess, again, I mean we have to decide, we don't want to do more harm then good but we also don't want to let the perfect be the enemy of the good and we're not talking about surveys, we're not talking about social science research so much, we're talking about these transactions.
And just to be a little cynical maybe but the biggest, one of the biggest concerns of providers is don't ask us to put something on one of these transactions that we actually have to submitting order to get paid and we can't get the information, or that we have to now start asking information we've never asked before. With race ethnicity although I'm against it but you can, the vast majority of people you can probably record it even if you haven't asked it for them. You might not get it right and that's not what you're supposed to do, but you're not supposed to do it but I'm saying I think they feel they have that fallback, that if they ask it, there's no fallback on education, if you put education you absolutely, if somebody doesn't answer the question you are clueless, you are completely clueless. I'm saying you try to collect it from the person but right now a lot of it is recorded that way by looking at the person or looking at the parents or whatever.
I'm against that, it's not the OMB way, but if you put something on like education --
DR. BREEN: Marjorie, you know that we changed that in the Census in 1970.
MS. GREENBERG: There is no way to get it. So I mean that's the biggest argument you're going to hear, you're going to absolutely have to get it from the person or you can't put anything down.
MS. HAYNES: Well we get it when a mother delivers a child we have it on the birth certificate, we already have systems that collect education of individuals within the NCHS --
MS. GREENBERG: But a birth certificate is very different then every claim that's submitted --
DR. MAYS: But I think that's the question --
MS. HAYNES: It doesn't need to be on every claim, it needs to be on the basic information you collect on that one person, it doesn't have to be on every claim --
DR. MAYS: I think all of that is still on the table. Okay, folks, we could talk about this until, I mean we could miss the rest of the meeting tomorrow, but we are going to schedule a meeting where we are going to talk through these issues because we have to go in a hearing with clarity as to what we want to answer and we among ourselves have differing opinions which it's fine to have them but it's not fine to have different questions, we want to come up with what the questions are, you can keep your opinions but it's like for the sake of the outcome of what we're attempting to do we need to get clarity as to what we think the best thing is so --
PARTICIPANT: And what the business case is to collect education.
DR. MAYS: Exactly. So you're going to need --
DR. VIGILANTE: What are our goals, I mean what are our goals? Is our goal just to, is our goal eventually to try to improve health, am I right or wrong --
DR. MAYS: It better be, I mean I don't think it's --
DR. VIGILANTE: But it's not just access, but it's actually health --
DR. MAYS: Wait a minute, if we have to have a long discussion on that one we're in trouble.
DR. VIGILANTE: I only say that because, John correctly said it's disparity in health care rather then the disparity in health and it's a very different thing. I think that is not, health care is just in service of health, it's a means to an end not an end in itself.
DR. MAYS: -- you all are getting into these finer distinctions --
DR. BREEN: It's not a fine distinction but then it also raises the question of what outcomes, I mean it is a long discussion so I suggest we table it.
MR. HUNGATE: I hope it's an early discussion, I don't want to end up going off the committee leaving --
I would ask that we schedule a time as soon as possible and that we say that we're going to decide in that meeting. I think that we need to hold our feet to the fire on this one.
DR. MAYS: Bob I think that Populations needs to schedule itself for a two day meeting, and in the two day meeting there are several things, we should work on the report, if we can get a time before the report we can work on the report, oh, we can't get a time that fast --
MS. GREENBERG: We're talking one month here, less then a month.
DR. MAYS: Oh, I forgot in terms of deadlines, I was thinking November but you're right, it's less then a month.
We need to schedule a two day meeting and I think it will be to talk about this, to talk about the mental health, we have several things that we could use some time to talk what are the issues, so the date will be little different but it will be
MR. HUNGATE: Well, let me know and I would like to participate in these discussions.
DR. MAYS: We think Quality should come and we also think for part of that is I think Quality should be there and Standards should be there, so probably what we're going to try and do is to see if we can coordinate it with times that you're meeting and just end up with --
MR. HUNGATE: Let me suggest another enabler maybe, pick a three person committee, Standards, Populations, Quality, to do --
MS. GREENBERG: Maybe we'll have a full committee meeting then.
MR. HUNGATE: A subset agenda of this topic area, if this, we need to probably detail, outline it a little bit --
DR. MAYS: Oh yeah, I think we need to, but I think we would do it a little different, I like to have conference call and have people detail what's to be discussed and then to do that as opposed to having it all reside in one person.
MR. HUNGATE: Thank you for the time.
DR. MAYS: Thank you.
MS. GREENBERG: -- even though we didn't ask them this, then we have the hearing on September 14th about recommendations one through eight, since it's the same people from the point of the Standards group, not to address the type --
DR. MAYS: I'm going to actually do it by phone.
MS. GREENBERG: But I think it will come up about the possibility of getting race, the functionality of the current standards to collect race ethnicity.
MR. HUNGATE: It probably should come up.
DR. MAYS: I'll bring it up then since I'll be on the phone for part of the time.
Alright, thank you.
Let's see what on my schedule I can do, I think probably what we should do is talk a bit in the time that we have left about mental health statistics because this is something I think we also really do need to move ahead on, the train is leaving us on this.
Can you make sure Suzanne gets to see that in preparation for tomorrow? There's a special issue of epidemiologic reviews that's all on socioeconomic position and epidemiology, so there's several interesting things and there's an article in there that I actually want to give to the committee tomorrow.
Agenda Item: Discussion of the Collection of HHS Mental Health Statistics and Potential Future Subcommittee Activities on this Topic - Dr. Mays and Dr. Kennedy
DR. MAYS: Should we talk a little bit about what went on on the phone calls? There were several of us on the phone call, we ended up with no notes --
DR. KENNEDY: Hey --
DR. MAYS: Stickies are real here, so let me not say we don't have anything.
DR. KENNEDY: Actually I have to confess, these are the stickies that I made --
DR. MAYS: As you know the way that this all started was when NHANES was talking about dropping some of the items that it was collecting on its mental health modules and part of that was because NIH who had supported it felt as if they were getting plenty of information and that they didn't, it's a six year cycle and so they didn't need to put the information in yet again. And I kind of freaked out and I'm like well wait a minute, there are certain things in health we would just never drop, they're always collected, some of them are even collected I've come to find out in a very old fashioned way because we want consistency. So for me it raised the issue of where are we in the department with a set standard about what kind of mental health statistics should be collected, and also the position, the perspective that we have on mental health statistics. Do we want to know anything about people's emotional well being the same way we want to know about people's overall health.
Well, after we talked about this a bit in the committee we had a conference call and we invited colleagues in other agencies who are responsible for mental health statistics so we had Karen Borden(?) at NIMH who does child mental health, we had Lisa Colpay(?) who is the chief for the adult psychopathology branch, we had Eve Macheeskee(?) who does the child, we had --
DR. KENNEDY: Nobody from SAMSHA and we had two people from NCHS, we had Gloria Simpson and Jennifer Maddens.
DR. MAYS: And Jennifer Maddens. And the distinction that was made was first and foremost the difference between statistics collected for surveillance and that falls into the purview predominantly of NCHS, and the statistics that are collected for prevalence and NIMH has been doing that, they have been funding an enormous amount, at an enormous cost I should say, a whole series of studies starting with Ron Kessler, well starting in the 80s with the epidemiology catchment area project followed in the 90s by Ron Kessler's national co-morbidity survey, followed by his reinterview and a series of ethnic studies that have been done, and then I have kind of a similar one for the state of California where we're also doing it as a follow back onto the CHIST(?) --
DR. KENNEDY: And one thing, may I just supplement a little bit what you're saying? And there had been an attempt in the mid 90s I guess to do a child mental health survey, the acronym was the YNOCAO, Youths Needs Outcomes for Child and Adolescent Psychiatry I guess and a lot of preliminary work had been done but it had been very, very difficult to get together and so that project, rather then continue they dropped. But there's some preliminary data which was the mini ECA and the acronym is MECCA(?), which Karen Borden was most familiar with so there's some preliminary kid data.
DR. MAYS: So in talking with people, we asked, well I asked the question what's your wish list and there were some things that evolved. One is there needs to be some, it would be helpful to have coordination, I mean that's nothing new we heard that for lots of things, but coordination across the department. We know that SAMSHA is collecting data but we didn't get to hear from SAMSHA, doesn't HRSA collect data also, mental health data? Yeah, I think HRSA, I think there's something that HRSA has mental health data on, and also looking at the difference between, I mean I think the question that we also need to focus on is what do we need from surveillance versus what do we need in terms of prevalence, I think that's a critical question and that that will actually to some extent drive the notion of what do we need to collect all the time.
The other thing I was totally shocked about was I'm of this issue of don't you want to know if people are doing well, if they're healthy, I mean resiliency and well being in mental health is a big issue now. Well I was told that they have a hard time collecting that data because their responsibility is really to focus on taking care of people and making sure that you're providing the right services, that you're identifying problems, but it's not to ask the question like how happy are you. And it's interesting because that question is a really important question, resiliency is a really important, you can learn from those who are doing well, not just keep focusing on those who are seriously mentally disordered. But they said they would like something like that but a business case has to be made in order for that kind of data to be collection.
And it's interesting because NORK(?) has been doing this for years and there's times, I mean I'm writing a paper that comes out of the, I'm sorry, the general social science survey, they for years have had this question on happiness and they have, I mean there's several variables in there we use and it's been a barometer, and it was great during 9/11, it was great during various points of time, you could probably look at where we are in terms of CPS and a lot of other measures and take the happiness but we have to make a business case for that. So I thought, I just didn't realize --
DR. KENNEDY: I mean we all agree that we knew that Vickie came from California so we understood, it's really only in the last three years that we've had to make a business case for everything we do. But more seriously there really is a stated case for example at NIMH and every year they get reviewed, what proportion of your grants and everything are going toward people with several mental disorders but it's not at all impossible. Two things have to happen, is the notion of happiness and/or well being, which may be two different things, I'm not going to go there now, and psychological sense of well being as opposed to the quality of life which is sometimes that can mean physical quality of life as opposed to psychological well being but I know you're talking psychological well being, needs to be hooked up with the notion of resilience because you can just, I don't know, is there a case for that to be an indicator or measure of resilience as opposed to just a sense of well being. And it would not be impossible, speaking from, this is from an inside the Beltway, I mean the place to make the case for well being and/or resilience would be probably in the Healthy People context.
DR. MAYS: That's a great idea.
DR. KENNEDY: But I didn't say that, that part didn't get recorded. But anyhow, cases can be made for these things and not having a crystal ball, not knowing what will be happening in our next year, there has been in this current administration a focus on obesity and healthy lifestyle and certainly well being would go along with notions of a healthy lifestyle as a way of preventing ill health and looking toward the future so that we build a healthy population who when they retire we can afford on Medicaid and Medicare and Social Security sorts of ways. So there are ways of handling it but just so that we're just very clear, for example, NIMH has been, I don't know if it's actually mandated but to deal with the more serious of the mental disorders and they're the ones that do the epidemiologic surveys. That said I know that in their services research branch some of the program announcements look at things like social supports and so that there are things that complement and make a connection.
DR. MAYS: The issue may also be from the surveillance point of view is that something that you'd want in surveillance as opposed to something that's in the NIMH in terms of prevalence. So I think part of what's important is for us to think about is how important is mental health to understanding ones overall health. I don't think the case is made well enough within HHS that all of the focus on physical health that without some sense of mental health or well being that you're actually missing an important component.
So while I think we talk a good game about mind and body I don't think that data analysis, like if you look at the data that's put out by HHS it's physical health in this report and mental health in this report, rarely do you see them also putting mental health in the physical health report. And some of us have been doing research that actually says particularly for racial and ethnic minority groups, things like discrimination, it's not only resulting in poor mental health but that it has a relationship to physical health.
So I think we're at a point where we can begin to make a case for needing that some of the people who are collecting physical health data to utilize it also with some mental health data. And it may be that the definitions of mental health within the department tend to be in terms of psychopathology or in terms of serious disorders, or in terms of substance abuse --
PARTICIPANT: Or lack thereof if it's health --
DR. VIGILANTE: You can foot that and say mental health may in part have biologically related, that as we go towards a biological model of mental health and mental illness that the analog to physical health is actually stronger then it used to be and actually there's a final common pathway that does bring them together at a biological level which is to say that they are, the case is stronger then it ever was that they are intimately related.
DR. MAYS: I think it's one of the ways to make the case, I think there's a lot of different ways to make the case but I think that's the issue is we need to make a case, we need to actually understand the inventory of what's available, I mean that I think in and of itself is going to be a bit of work but I was told that for instance Jennifer has done it for, because I guess they had a discussion with STAT Canada, so she has an inventory, and I'm told to talk to Ron Manderscheid(?) because I think he has it in terms of the NIH side, so that in and of itself would be very useful for us to get some information about what is collected and how, I think it's also important to just not know okay there's this variable but to me it's so critical to know that the two aren't usually in the same reports. Eugene and then Suzanne.
DR. LENGERICH: Another person to add possibly to your list there is people at CDC, Dave Moyerarity(?) has done a lot with the BRFSS(?) data and their set of five questions on depression and, they've done a lot in that area and I think that that group, the BRFSS groups at CDC would be important to talk to as well.
DR. MAYS: Okay. Suzanne?
DR. HEURTIN-ROBERTS: I think it's important to consider the point of view of organizations like NAMI, National Alliance for the Mentally Ill, because I think the case can be made that NIMH is focused on the serious mental, the seriously mentally ill is in some part a result of NAMI's lobbying because I think it wasn't always this way, there was a more balanced view of mental health that included --
PARTICIPANT: As opposed to pathology.
DR. HEURTIN-ROBERTS: That included health as opposed to pathology and not only the psychoses and things like that. Anyway, I think that's important, it's a political issue you're going to have to still tangle with.
DR. CHAPA: I was just going to say I think some of the concerns of NAMI that as they have expressed came from some of the research that didn't have translatability and so that's what the news, you read it in the paper often, NIMH studying rats, something, or pigeons in love so you see there's always --
It's not really my point, it really is something that's used as fun in the media politically so that there's, so that what's being done is cute and I think that gives validity --
DR. KENNEDY: The other think to take into consideration and this goes along with what you're saying is that it is as if there's a continuum necessarily, I mean this is my hypothesis, between well being and ill health, whether it be mental disorders or whatever because I think you can certainly be physically unwell and still have a sense of well being, or be happy or however you want to do it, there may be different dimensions and there may be startling reactions but it also may go to the NAMI think where if you don't resent it necessarily as a continuum or to explore the potential for different dimensions.
DR. VIGILANTE: Certainly strong correlations, very strong, it's in the cardiology literature, about depression and isolation and bad outcomes post MI.
DR. BREEN: One thing you said was surveillance versus prevalence, I'm used to the oppose of prevalence being incidence and so I wasn't sure what --
DR. MAYS: I probably should say incidence and prevalence, I think that's what they said --
DR. BREEN: Surveillance is kind of the usual monitoring and I think you did want to distinguish that in these large studies, large national studies that are trying to be nationally representative, right?
DR. KENNEDY: At best they'll get you once every 15 years an annual incidence rate which will be, they have stronger prevalence data.
DR. BREEN: And I've tried to use just anecdotally the NHIS mental health indicator and it's definitely measuring pathology or else this country is extremely mentally healthy and living here I don't believe it.
DR. KENNEDY: Are you referring to the CASICS(?), in the HIS 2001 --
DR. BREEN: Yes, they are, but the CHIS(?) used a different one, one was CASICS and one was Kessler --
DR. KENNEDY: No, Kessler's is CASICS --
DR. BREEN: Okay, there was another one, K10(?) maybe, I don't know these because I'm in the field at all --
DR. KENNEDY: CASICS is a subset of the K10 but the point is that they're, he called them a measure of psychological distress because they're not exact, he's trying to capture the broadest population of people who might have mental disorders and he winnowed them down mostly from diagnostic interview schedules used in surveys of the two highest prevalent depression and anxiety so you'll see those mostly reflected, schizophrenia being so low prevalence --
DR. MAYS: -- there's been some discussion about how CASICS is working because we just went through a whole thing, even called him about it to see, there's parts of it that have problems --
DR. BREEN: Well what was interesting was he had published or there was, he had published something, he'd come out with some findings, and it was published in the Times or the Post, maybe months ago, within the last year, and there was a percentage of people who were mentally ill and it was exactly the same percentage that we found in the NHIS, I mean it matched up perfectly so that was good, but it was a tiny percent so if you wanted to look at it cross tapped with anything else.
The other thing, the Scandinavians are doing a whole lot on this and they're trying to understand health as a composite of socioeconomic well being, happiness, resilience, education, social support networks, I mean they've got a whole range of things. I don't know if they incorporate spirituality in there but I think that would be another piece that you're doing well on that realm as well and I don't know if that's included in the mental health literature or how that factors into this. But I agree completely that we should be measuring the whole spectrum of things that go into people's well being. And it seems like that might be another whole conversation.
DR. MAYS: What we're going to do is there's a kind of subgroup and if people want to join it they should just let us know, we're going to charge them with two things at this point, one is trying to find out what's being collected, so I mean we need to get from people what's being collected, who collects it, how frequently, so that we have some sense of it. And then the other will be, which is I think the more difficult discussion, is what is it that we need to know again to improve people's health. I'm not going to get to the complexity of health or health care but I think that's what this group is going to do.
So the smaller group I will have them pull things together but again this is something that when we have a larger meeting we all need to talk about as I think a critical issue. But the problem we're having is we do need people from these other agencies so we got to work on a way to see if they can be either detailed or participate with us for some point in time because this won't work if we don't get the SAMSHA people to work with us. It's not going to work if we don't get NIMH to kind of on an ongoing basis to work with us because this is so much a part of what they're mandated to do that this, I'm always very careful about, I don't see us coming up with recommendations and then the agencies are like gritting their teeth like we don't even do this anymore, we don't want this, it's like we need to hear from the agencies and we need to try and work with the agencies and not do things that dictate to the agencies and then it's just not even relevant.
MS. HAYNES: You know SAMSHA has its own data committee --
DR. MAYS: It does?
MS. HAYNES: Because I've been invited to go testify before --
DR. MAYS: Like it's own data council?
DR. CHAPA: Actually Ron Manderscheid, isn't he --
MS. HAYNES: I got an email from SAMSHA asking me to come submit my data project, but this one and the one that we're doing with the county data, present before their data council on September 21st --
DR. KENNEDY: Is this a data council or their advisory council?
MS. HAYNES: I don't know, I can go up on my email and see.
DR. CHAPA: But they do have an office of advice, SAMSHA, and they do some surveillance --
And they do have some data group with regard to states, so they have state -
DR. MAYS: I mean is it like the Data Council where they --
DR. CHAPA: I'm not sure exactly everything that they do but I do know that --
DR. MAYS: That's someone we should contact.
DR. KENNEDY: Keep in mind that SAMSHA has got three centers underneath, Ron is in the Center for Mental Health Services, the Office of Applied Studies is up at the SAMSHA level and they're very different.
DR. MAYS: So would Ron know what's going on in that other office or do we need to get, maybe we need to get somebody from, when we start let's get somebody from each of them and they can sort it out among themselves if they don't think that one person could represent all those offices, I think that might be, all three offices --
DR. CHAPA: I agree with you, it's OAS that would be --
DR. KENNEDY: And how broad are you saying mental health? I'm not saying the well being part but are you including substance abuse because remember there are two substance abuse centers and --
DR. MAYS: I think that's what the committee should discuss, I mean I know what my personal feelings are but I think there's more politics involved and those I really don't know, so I think, I don't want --
DR. KENNEDY: If you include the substance abuse in SAMSHA keep in mind there are two substance use --
DR. MAYS: NIDA and NIAAA. And see we haven't asked them to come to the table and I don't know whether it's a good thing to separate them or whether they should be included, but I know from a data perspective they also fund and collect a fair amount of data that's not, it's on substance abuse but it's also mental health so to some extent --
DR. CHAPA: It's done collectively --
DR. MAYS: So they will also collect data on depression and alcohol use so there's ways in which what they get is valuable but it's just that it's for a very narrow population, meaning usually it's for substance abusers.
So those are the tasks that I think we're going to face in doing this so I think our next thing will be to work with the mental health community, Don Steinwachs is very involved in it?
DR. CHAPA: Could I make a last comment? My office has asked me to look at mental health in primary care settings for racial and ethnic populations and I wasn't quite sure why we were spearheading this and this is my feeling and not SAMSHA's and NIMH but I'm just going to do a little scan and concept development and then from that point on I believe this is what I know, this is tentative so don't me to hold everything because we have zero budget currently, that will bring in the other partners at that point. There are folks that have been contacted at the community level, not by me, this was done previous to me being brought in, and some of the folks also from the various operating divisions, so SAMSHA and IHS, etc., so I just wanted you to know that that has just come about, I've got 30 days to pull it together --
DR. MAYS: I can tell you where a lot of data is on that, the HCC, the Healthy Community whatever, I forgot what that other C stands for, but HCC has a lot of data, RAND has a lot of data on this.
DR. BREEN: Are you looking for data sources or studies?
DR. CHAPA: Well, I'm actually looking for studies, and I have done some --
DR. MAYS: Those are the two I would go to, they've actually developed some modules, Lisa Rubenstein who's at the VA has developed some modules, and Maja(?) Jackson something, I can't remember her married name --
DR. KENNEDY: Has Ken Wells been doing some --
DR. MAYS: Maja is in Ken's center and so is Lisa, and Jeanne Miranda --
DR. CHAPA: Right, I found those.
DR. MAYS: So they have some very specific --
Alright, thank you folks, I think we should probably stop for now, we're right on time.
[Whereupon at 5:00 p.m. the meeting was adjourned.]