[This Transcript is Unedited]
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DR. MAYS: Did you get the e-mail this morning? Did you get one from me that had the agenda?
DR. QUEEN: Yes.
DR. MAYS: What I want to try to do is the two agenda items that were kind of the major pieces of what we said we were going to talk about today is one, to try to figure out because we have several potential, which will be great, but several potential people who might actually rotate off and I think it will be good for us to go through and see what all the work is that we have, how we want to accomplish getting that work done and then to move into kind of what is the newer piece which is continuing with the race and ethnicity implementation of OM guidance and kind of commenting on that.
So, what I tried to do rather than have this structured stuff over here and the projects over there is to really because I think we should revisit this when we have a full complement of both members and staff is to take a short-term perspective on figuring out the best and most efficient way with the resources that we have to get everything that we need done, and also to make sure that the individuals who are in those areas can give us guidance in terms of what they think will be necessary to complete something in the event that, and there is no escaping now but I wanted to really enter into the names that are set forth.
I mean if there is an area that really has a long-term continuation and we don't have any expertise I think it is really important for you all to hear that if we make a commitment to continue that we need to have a person to help us to continue it, and that it, also, in terms of when I guess Susan and I talk that it may mean thinking about also agency staff who might be good to align with that particular issue.
DR. QUEEN; And we did discuss that.
DR. MAYS: Great. I guess the only thing she doesn't have is that Debbie was very good at giving us a packet and in the packet is what the subcommittee's charge and work plan is, the notebook. I guess I just want to remind us and the reason I want to remind us as to what our charge is is that I think to some extent when we get to some of these items like particularly when we talk about the use of race and ethnicity we want to make sure that we stay within what it is that we really should do versus kind of all the things we may be interested in doing because it is a lot of work, and I just want to try to keep us a little bit on point.
Barbara always reminds us about the issues of population and not individual and so I just want to kind of put that before you and so the subcommittee charge and work plan is in your.
The next items, I think A, B and C we might be able to go through relatively quickly because they really are reviewing where we are with these things, what needs to be done, do we need a dissemination plan; do we need to comment on what the product is and let us just kind of wrap it up.
DR. QUEEN: Where are you on A, B, C?
DR. MAYS: I am sorry, the front page, the agenda. I put it at your place earlier today. So, it may be in your other folder maybe.
What is currently on our plate is functional status and according to the work plan outline that we had it is reports at the department awaiting a reply. So, when a reply comes back whose responsibility is it to reply to the reply?
MS. GREENBERG: We don't typically reply to replies.
MS. GREENBERG: Great, okay.
MS. GREENBERG: That doesn't mean we shouldn't, but it is more like monitoring the reply probably because I know there has been some discussion as do we expect the Subcommittee on Standards to carry the banner here, and I frankly think if we do it is not realistic because they won't, and so what would the role of the subcommittee be? I can tell you one thing and that is that my staff has funded, is in the process of funding, I am going to get this wrong, a consultant who actually was one of the people who testified and has a long history of involvement in functional status and I see activities to work with professional associations, to develop research protocols to address the various issues of the report that have to be addressed before functional service could be adopted in administrative data. So, we are following up on those recommendations very specifically.
MS. COLTIN: So, that will be part of the reply?
MS. GREENBERG: At this point I am not even aware that the report has been circulated to the members of the Data Council. I, personally, think it would be very good if, you know, the Committee has presented other reports to the Data Council. I think it would be good if some member of the Committee presented the report to the Data Council and I am sure it would be receptive to that.
Generally what happens is it circulates and it could be a vehicle then for getting some reactions and then generally he asks the agencies to react to the report and he compiles it and that goes into the letter. So, I assume that will happen and we will tell them that we are actually doing this because one of the recommendations is an annual report from the department I think to the Committee but I mean for that matter I am happy to ask Jim to seen an e-mail and say that the subcommittee would like that opportunity, if you wish.
DR. MAYS: Let me just ask, who was kind of chair or whatever?
MS. GREENBERG: Lisa. She is no longer, you know, but I think she would probably come down and present it to the Data Council.
DR. MAYS: I was just going to say that I would feel more comfortable and I have no problem with asking someone else to do that because I think that you want substance rather than a figurehead.
MS. GREENBERG: Lisa would present it at a time when John is at the meeting anyway.
DR. MAYS: Perfect. So, if you would follow up on that, does that sound agreeable to everybody? Okay, perfect.
Then within the Committee when functional status issues come up I would suggest as a process that we just consult with the Standards Subcommittee. Our process is, unless we feel comfortable about being able to answer your questions or do whatever comes up that the two chairs of those Subcommittees might consult and then figure out a way to answer whatever comes up.
MS. COLTIN: There are two issues that we need to monitor. We need to monitor the jointly with standards, and I think we need to be diligent in monitoring them and bring them to the attention of the Standards Subcommittee. One is that we move from one version of the transaction standard to the next that the current placeholder for the functional status data element --
DR. MAYS: Is there really a placeholder there?
My colleague, Bob Davis is working on this guide, and he couldn't really find it. There is something, but it is not like --
MS. COLTIN: Do you have a copy of the NUCC data set? Look in there because it is in the NUCC data set as not recommended I believe, but even so I think they mapped each data element that is in the data set to the segment in the transaction so that it should tell you where it is.
MS. GREENBERG: I don't really believe that there is anything currently in the standard that would allow you to put in an ICF code.
MS. COLTIN: There is no code set defined for the data elements.
MS. GREENBERG: True, but I mean like a segment that would allow for it.
MS. COLTIN: I think we need to check because my understanding at the time I was on the NUCC and this goes back 2 or 3 years because I haven't been on it recently was that there actually was a data element on the 837. It is called functional status or something like that but it is just like a check-off, I mean it isn't what I thought it was. I thought it was designed to just be a character field of a certain length with no definition as to what codes that would find and then it was decided what codes that would imply that hopefully the length and the format would come in that code set.
DR. MAYS: I will check on that again and see, and let me just ask the question if it isn't is there a specific recommendation of what you think needs to be done if there isn't that placeholder there? Is it possible to get?
MS. GREENBERG: I think what the recommendations in the report were that really it is premature to go to the standards or positions until the research has been done.
MS. COLTIN: But we have to kind of, we have to account for the lead time involved. So, the forty fifty version would potentially become the standard when? Not in 2000, not October 16, 2002. So, I guess the earliest would be October 2003.
So, the trajectory for improving the state of the art on the ICS is what in relation to that?
MS. GREENBERG: To be at a point where you could really build the business case. It probably is going to take a few years.
MS. COLTIN: So, it probably isn't even the next version of the standard that we need to worry about it. It is the version after that.
Then I think it is simply a monitoring function saying that as we monitor the progress of the research on the code set we need to also monitor the development of the next iteration of the standard such that when the code set is ready the standard actually has fields that can be used to capture it.
DR. MAYS: Okay, so we monitor the code set. What else do we monitor, I am sorry?
MS. COLTIN: The evolution of the transaction standards such that when the code set is ready to be recommended --
MS. GREENBERG: All these issues involved with actually expecting people to capture it and to use it --
MS. COLTIN: Again, I go back to what I said yesterday. It is not a requirement. It just has to be in there so that those that want to capture it have a vehicle for doing so. I don't think we have to approach this as a requirement. I don't think it has to be a required field. In fact, I think it will sink it if we try to make it a required field at the outset.
MS. GREENBERG: But in light of the recommendations in the Committee's report don't you think if we went to, I mean if we went to X12 now and tried to present a business case for having this field there they would say, "Look at the Committee's report. This is premature."
MS. COLTIN: I don't think we would attempt to present the case now. I think we do have to monitor the research.
MS. GREENBERG: Okay.
MS. COLTIN: But one of the things that I know we talked about in CPT5 is the extent to which these transaction standards can support research. If one of the considerations in a pilot site protesting this is that they be able to just make it part of their standard transaction and the standard transaction won't allow that and they have to go through a whole separate process to get the code to us will we ever get pilot sites?
MS. GREENBERG: I will tell you what I am going to look into and see if there is anything in the standards that could accommodate this because then a person could use a health care service data reporting guide which isn't the HIPAA guide but to do some of this research and then have to do a completely separate thing.
So, let me check on that?
DR. MAYS: Do we have your second monitoring issue?
MS. COLTIN: The second monitoring issue is the status of the code set. I mean there are two things. One is the status of the transaction standard having a data element defined to hold the code set, the functional status code and the other is the code set itself and whether it is ready to be recommended in terms of its acceptability to the field.
MS. GREENBERG: Let me ask something getting to what you were talking about and that is right now we really don't have anyone on the Committee as I understand it or even on the Committee but let alone the --
DR. MAYS: Should we ask Eugene whether this is his area?
MS. GREENBERG: -- subcommittee, yes, who or on the subcommittee who has and particularly who is going to stay on once we get new members who has embraced or has as a major focus disability, functional status, da, da, information.
MS. COLTIN: I would phrase it differently. I think that we just talked about advising AHRQ around quality measurement. This is an outcomes measure.
MS. GREENBERG: It is an outcome measure.
MS. COLTIN: And it facilitates the measurement of health outcomes.
MS. GREENBERG: I agree.
MS. COLTIN: One dimension of health outcomes which is functional status. If in fact quality is a focus area, functional status is a very important component of measuring quality.
DR. MAYS: So, maybe if we get a person, you see I think it is sounding very important that we get a person who has expertise in quality. That person can at least be the point person for this to make sure that to some extent we have --
DR. STARFIELD: It is the outcomes aspect of quality. Not everybody --
DR. MAYS: I agree. So, we want to make sure that as we look at what populations' charge and work plan is that we now know that under functional status that we have a monitoring function with these two so that we can kind of --
DR. STARFIELD: I don't know if you are recording names but if we have names, I mean like Martha Gold would be pretty good.
MS. GREENBERG: What about Heather Palmer.
MS. COLTIN: Marsha Gold, you mean from Mathematica or who is --
DR. FRIEDMAN: M-a-r-t-h-e at Columbia.
MS. COLTIN: I don't know her.
MS. GREENBERG: CCNY.
DR. FRIEDMAN: Oh, CCNY. She, also, did some nice work on summary health measures.
DR. STARFIELD: She has a lot of areas and the other one you mentioned was Heather. Heather is really known for her process measures.
DR. MAYS: Good, that is helpful because I do think it is like we have done all this work, and it is like let us see it to its completion as important.
Okay, so, let me just ask a couple of questions in terms of the person who is in the works that is going to work with the professional organizations. Is there work that the Committee needs to do before that person goes out to do this work or do we need this on our agenda like anytime soon to assist them with what they need to do?
MS. GREENBERG: Provided that the contract goes through I think he would be willing to come and talk briefly with you at the time of the September meeting or have a conference call with you or something like that.
DR. MAYS: Okay, we will schedule a conference call because we are going to use the September time to do that. So, I would suggest particularly while Kathy is still with us that we have a conference call once this person is put in place.
Then at that time I think what we should do is talk about if a particular agency or a particular organization that you are concerned about will give the person leads and things like that. So, that will be great.
Anything else that we need to do?
So, the agreement around functional status is that we will be the diligent monitors, but we are going to do it in partnership with standards and that --
MS. COLTIN: They are the only ones that can actually make the formal recommendations about the codes and fields, right? I mean the full Committee would have to take action on any recommendation on the letter but wouldn't it really be fair to -- if they disagree --
DR. MAYS: The weight of their recommendation really helps.
MS. GREENBERG: They, themselves aren't going to go to the standards organizations.
DR. MAYS: Great, all right. So, I think that should take care of functional status. The Medicaid Care Report --
(Power loss from 1:21 p.m., to 1:30 p.m.)
MS. COLTIN: We could probably get their mailing list.
DR. MAYS: I will ask the first way which is for them to do it, and if I get rejected, I will ask the second way, whether or not they could share their mailing list with us.
MS. GREENBERG: So, Barbara is going to communicate with Diane.
DR. MAYS: Hello, welcome back. We had a power failure.
DR. QUEEN: Oh, is that what happened? Is he on the line? Did he call back in?
DR. MAYS: He hasn't yet.
DR. QUEEN: He and I were talking to each other a few times.
(Laughter.)
DR. MAYS: This is one of those telephone introductions.
DR. QUEEN: I think he is trying to call in, but he may not get back on.
DR. MAYS: Okay, great, thanks, Susan. With the managed Medicaid report part of what we have come up with is that I am going to talk to the Kaiser Family Foundation and see whether or not what they will do is either distribute the report for us or lend or give us their mailing list so that we can distribute it.
What we will do is take the executive summary, put a nice cover on it and put a cover letter to it and then distribute it that way.
Eugene?
DR. QUEEN: Hello?
DR. MAYS: Oh, no, Susan, are you still there?
DR. QUEEN: I am.
DR. MAYS: I don't know. Maybe he is trying to get in or something.
DR. QUEEN: Was Paul going to call in, too?
DR. MAYS: Yes, Paul was going to call in and -- oh, he wasn't, okay, but I did send an e-mail.
MS. GREENBERG: So, you said you wanted to send out the executive, however, we figure out a way to get it out, you want to send the executive summary and then you said, "With a nice cover on it."
MS. COLTIN: Yes, get it printed nicely.
MS. GREENBERG: And you want some kind of cover on it?
MS. COLTIN: Yes.
DR. MAYS: I don't want it like this.
DR. JACKSON: What we did with the interim reports, remember it was kind of a hard cover that had a design on the front and then some weight, some sense of stability to the publication, versus trying to get this thing printed we are going to add an amount of time and I don't think --
MS. GREENBERG: Do you recall we actually had that cover design on the outside because to say a nice cover on it doesn't happen quickly.
DR. MAYS: Okay, wait. I will even ask Kaiser if they can make you a cover.
MS. GREENBERG: They would package it.
DR. MAYS: Exactly. I will even ask that. They do it all the time.
DR. STARFIELD: But they don't do it all the time with others. They do it with their own. This is new for them. So, I don't know.
DR. MAYS: Gene?
DR. LENGEVICH: Yes, it is me.
DR. MAYS: Welcome back. We are sorry. There was a power failure. The lights went out. Everything went out. I mean I think it is a long shot myself, but I think it is worth a try. I think it is worth if they won't do it to see whether or not for example they would either give us the mailing list and if they won't give the mailing list if they will then send an announcement out on their e-mail network.
DR. FRIEDMAN: It seems to me they would at least do that.
DR. MAYS: But you would like a cover on it and then somebody has got to write a little letter. Who did the report? I am not opposed to this, but I, also, like if people have worked hard on something that they could --
MS. COLTIN: Lisa was the chair, but I was the contact for all the conference calls working with Sarah Rosenbaum.
MS. GREENBERG: I guess the staff person was Carolyn Rimes, but we are not going to get her.
DR. MAYS: Would you like to write it?
MS. COLTIN: Would I like to write it?
DR. MAYS: The letter, the cover letter.
MS. COLTIN: Okay, I don't mind drafting it for people to take a look at, sure.
MS. GREENBERG: Just a rough draft.
MS. COLTIN: I mean I don't think I should be the one to sign it because at the time it actually gets distributed I might not even be a member. I think as the chair --
MS. GREENBERG: It should be signed by Vickie.
MS. COLTIN: Yes.
DR. MAYS: I will sign it and I will acknowledge you.
MS. COLTIN: Either Vickie or John. It could be either one. At least John was here at the time.
DR. MAYS: That is fine, either way.
Great. So we have that taken care of.
DR. LENGEVICH: The State Governors Association and State Legislators will use it and there will be the correctional research efforts in JAO because they do a lot of the stuff for the congressional people.
DR. MAYS: Wait, the state governors association and what was the --
DR. LENGEVICH: Association of State Legislators.
MS. GREENBERG: You know some of those groups that you deal with in your user liaison --
DR. MAYS: If you think of any others can you e-mail Debbie and then we can look and see if Kaiser has those on the list or not.
DR. LENGEVICH: They have a tremendous mailing list. If I can get it out of them, I can e-mail it to you.
DR. MAYS: Perfect, and if nothing more we can get announcements out.
MS. GREENBERG: Obviously NCHS will have to, well, unless Kaiser does it we will have to send this out, but should we have suggestions and everything e-mailed to Susan as the lead staff? We are going to end up having to send it. So, Susan, maybe Debbie, okay? All right.
DR. MAYS: Is there anything else on that? Let me just ask one question? If it comes back and everybody wants 101 things or they love it or something who answers the questions?
MS. GREENBERG: We are not asking for comments obviously. The report is done.
DR. MAYS: So, it is kind of over with. So, they can say, "Good job," and then we can move on.
Okay, how about the C then? Let us go to the next one. You, also, had listed health data systems in the US territories and other political jurisdiction.
Now, this one said that it was completed and let me make sure I have --
MS. GREENBERG: Integrated and incorporated into the departmental planning process.
DR. MAYS: Okay, so it is that. Is this something that would be useful to the 21st century report? No? I don't know the content of it.
Dan, is there anything in there that would be useful to you? Do you mention it in there or something?
DR. FRIEDMAN: No, I think that is what we need to do, and I will take another look at it. I certainly think it is worth referencing and I think maybe something else we should think about is what are the other reports and documents, even if it just ends up being a footnote. I think it is still really worth --
DR. MAYS: That is what I was thinking.
DR. FRIEDMAN: We could think about that and make a list, just develop a list of what are the other reports and documents that we, obviously NHII but beyond that that we should reference in here.
DR. MAYS: Because see you may get to a different set of users, and I think that is just great.
MS. GREENBERG: There are some things that Jerry Tranamber worked on when he was on the Committee, community health statistics, state and community health statistics. I certainly would think that should be referenced, and I am just thinking in terms of things the Committee has done.
DR. MAYS: Okay, is there any other part of this because it sounded very formal that is good to use as a brief or as an article or any particular places that it needed to go? Who was the person that pulled it together? Who was the chair?
MS. GREENBERG: The member who was behind it was Forten Firomato. Olivia Perfocus in the Office of Minority Health ended up sponsoring the travel of these individuals from the Pacific and Puerto Rico or whatever to come to what I think was a 2-day meeting. Dale hitchcock took the lead in writing the report.
DR. MAYS: Have you seen that? I actually didn't go to the web site to see the content.
DR. STARFIELD: But it has been useful in the department. So, maybe that is as far as it needs to go.
DR. MAYS: See what I was going to try to figure out is two things about it. It sounds like something that people often want to know this. So, either an article or the right newsletter would be useful, and the other would be to get to the new Minority Research Center.
MS. COLTIN: Is there an international health statistics journal or anything that would be interested in this?
MS. GREENBERG: We can go back and look. I mean a lot of the recommendations were directed to the Federal Government.
DR. MAYS: Did Data Council get this?
MS. GREENBERG: Yes.
DR. MAYS: Okay. Here is what I will suggest then. I will look at it and then we may need to bring it up again to figure out where can we put it because at least it sounds like in the department it might be useful to make sure given that it is all these territories and stuff that the Office of Research on Minority Health gets it, the Minority Research Center at NIH gets it.
MS. GREENBERG: That is true. They may not be aware of it.
DR. FRIEDMAN: Another place that actually might be interested --
DR. MAYS: The Fogarty people maybe?
DR. FRIEDMAN: No, Lu Chin has a journal. It is not his journal, and --
DR. MAYS: Oh, I know him.
DR. FRIEDMAN: It is the Journal of Asian-American Health. He is at Ohio State and that journal is certainly is all over the territories and insular at the same time. He might be interested in an article based upon it. That is certainly conceivable.
MS. GREENBERG: You know the person really, I mean for the Pacific Insular area who really was very involved and who knows this area very well and that is Lynnette Oraki. Lynnette worked with me on the committee for many years and then she went over to HRSA, but she had lived in and worked in these areas in Micronesia, etc., in health planning.
Actually my boss happened to be out there on some site visit and recruited her. It was amazing, but anyway since Lynnette has gone to HRSA she has now resumed her work with these areas, and she was very much involved with the whole meeting and if there were going to be some kind of article or something written --
DR. MAYS: She should be a part of it.
MS. GREENBERG: Yes, because it has been a while now and she would have --
DR. FRIEDMAN: That would be a good home. They like to do applied stuff. He is always looking for material and I think that would be a good home. The other organization that often has money and they are very good at getting publicity is, excuse me I know the acronym is NAHO(?) National Association, no, no, what is it? Who is that guy who was on the, one of our short-lived committee members who moved to Indiana or Illinois, the Asian-American Women's Health Association.
DR. MAYS: Oh, the one Mary Tran is on?
DR. FRIEDMAN: Exactly. She is so good at publicity and they get so much money that they put on a dinner.
DR. MAYS: I know. Mary is good. I sat on a board with her.
DR. FRIEDMAN: She would be a really good person to contact about it.
MS. GREENBERG: You know this, also, includes Puerto Rico.
DR. MAYS: I know but it is still an island. Here is what I would suggest is that I guess I should take a look at it. Lynnette Oraki and then we could see if we could get Mary Tran and we could ask David and that we have just a quick conference call.
DR. FRIEDMAN: Aren't you going to ask Cotensia, too?
DR. MAYS: Oh, I am sorry and Cotensia and Dale. Let us ask them and see what they are willing to do. If they are not willing, they may say, "That is another life, and I have moved on," you know that kind of thing.
MS. GREENBERG: The reason I suggested Lynnette is because she actually is involved in the area.
DR. MAYS: And then see where we can move it to. They may have other suggestions that are even less work which is oh, just an e-mail to these groups or something, but it will get it out there, give it life and --
MS. GREENBERG: First you want to look at it and then --
DR. MAYS: Yes, I do.
MS. GREENBERG: Let us know.
DR. MAYS: Yes, but that will be who I would suggest would be a part of it. There is no rush on this.
MS. COLTIN: This is different from what we have done in the past. I mean this is much more like an IOM strategy which actually says, "We did this report, we did it under contract in our case, to advise internally the Secretary's Office, but we are going to use public awareness and perhaps pressure to get action within the government on this report," and that is something we haven't done before is to try to bring external pressure.
DR. MAYS: I am not trying to bring pressure.
MS. GREENBERG: That is fine. I mean over the years -- I support this totally. We have done this to some degree in the past, but this is why I have always said way back in the pre-HIPAA years when people would say, "Oh, the department didn't pay any attention to our recommendations," often the field has used reports and recommendations and has paid attention to them even if the department didn't. So, I mean I do think that is perfectly appropriate for the Committee.
DR. MAYS: Obviously where it came from is when I went to the IOM and it is like not one person in that room will think about the report and --
MS. GREENBERG: The Medicaid managed care?
DR. MAYS: The Medicaid managed care, and I mean not just the people on the Committee but there are other people there. There were colleagues from other agencies, and I won't say who so that you don't get upset with them that they didn't know anything about the report. My feelings were hurt. I was like here I thought I came with this great report and you all knew about it and I only had to take excerpts out of it. They didn't have clue, but they loved it on the IOM Committee. They were really excited about it. There were two past chairs on it, and they were like, "Oh, yes, these are the kinds of things you should" -- and then I thought we have to find a way to get this stuff out then.
So, I guess I wasn't trying to put pressure as much as I guess I have started calling up the agencies sometimes when they have reports and saying, "I cannot get it." Either it needs to be on a web site or it needs to be disseminated, especially in terms of NCHS. So, I think if we can get our stuff out I am all for it.
We have to be careful though not to do political pressure.
MS. GREENBERG: I didn't think we could do things like that.
DR. FRIEDMAN: You cannot be lobbying for money or --
MS. GREENBERG: All right.
MS. COLTIN: But if we are making recommendations we can garner support for our recommendations.
DR. MAYS: This is just another version of e-government.
MS. GREENBERG: Okay, thank you. I got really worried. I was not trying to do that. Don't kick me off for lobbying.
DR. JACKSON: As someone who hasn't been here and I was not aware of what you did for distribution last time, are you saying that this had not been done when it was created in terms of contacting associations and groups to let them know this report was available?
MS. GREENBERG: We sent it to the department. We put it on the web site. I don't know if it went out to people who came in and testified or not. Frankly I don't know if we did because you know, Carolyn Rimes was moving on and --
DR. MAYS: Okay, so, we are going to get those out.
DR. STARFIELD: You know who else might do it, you know Sarah was very involved, Sarah Rosenblum.
MS. GREENBERG: I know, and I don't know what happened with that.
DR. STARFIELD: That part of it just died. So, we certainly don't want to ask her to do anything.
MS. GREENBERG: We just had to cut that off.
You know since we do have almost all the members here from the Executive Subcommittee, and I know John isn't here, and Simon isn't here but I realize we forgot -- this will take 1 minute, but we forgot to talk yesterday about the annual report of the Committee. It was on the agenda but we forgot to talk about it, and that is that we always did an annual report and then we started doing like biannual or whatever, but we think we probably need to do one for like 2000 and 2002 and do you see any reason why we shouldn't?
DR. MAYS: I think you should.
MS. COLTIN: I think it can actually be fairly short and sweet because we do have all these nice reports.
MS. GREENBERG: Right, that we can just reference.
MS. COLTIN: You can just present a brief summary of the focus of the report, not even the whole executive summary, just the focus of the report and then where to find it.
MS. GREENBERG: And we have the symposium report and so we have a lot of things, but I think the last report we have done, annual report for the Committee was 1996-1998. We don't want to go back to 1999 because we have captured it in all the 2000 stuff, you know in the symposium and everything and the history. We did actually quite nicely in the history, but I think of 2000-20002.
DR. MAYS: Okay, so you have our blessings.
MS. GREENBERG: So, I will just e-mail John that I did take the opportunity to talk to you all about it.
DR. MAYS: Okay, let us go to D now because this is where it gets pretty substantive and there is more newer stuff, and we have to make some decisions. and I am going to put this on the table that whatever needs fixing here please feel free. I am not one of those who gets out of joint about it.
What I wanted to do was to try and have us figure out how to do the work and then also what is the work and so one of the things I saw is that like when Kathy was doing quality it was done as a work group status and it is like because populations kind of has lots of things and we need to kind of learn to try to designate some things and work efficiently I don't know whether it is helpful to give it a work group status or not.
MS. GREENBERG: You mean on race, ethnicity?
DR. MAYS: Yes.
MS. GREENBERG: Oh, I thought you were asking what is the status of the work group and I thought what work group. You are saying should this be given work group status.
DR. MAYS: I am raising that as more of a structural thing as the chair because there are lots of things that come under population and then I want to make sure that not every time everybody has to do everything. So, I just want to raise that as for what I can observe allowing you to have that really was very good and it may be that populations is going to be the kind of subcommittee where it has a lot of bit items and it has to worry about forms, and it has to worry about not running everybody in the ground.
It might be useful to think of making that a work group.
MS. COLTIN: Let me give you kind of the pros and cons.
DR. MAYS: Thank you, because I don't have a clue.
MS. COLTIN: One of the pros would be that when it has work group status first of all it has some visibility. It has its own charge and its own work plan and it has staff.
MS. GREENBERG: And it could contract staff specifically to that topic.
MS. COLTIN: Who will work on that topic and are vested in it and willing to commit some resources to it. So that is on the pro side.
On the con side what I have found is because there was such substantial overlap between the membership of the Population Subcommittee an the Quality Work Group getting meeting time for the Quality Work Group on any of our regular meeting agendas was almost impossible and you know Populations takes the lion's share and you couldn't compete with Populations because there was this overlap and then you would have the overlap on the other side. So, you either end up having to have separate meeting dates or conference calls or you do what I ended up doing because this was such a problem, I went to John, and I said, "You know, not only is this an issue in terms of overlapping people's time but I keep hearing from people that other members of the Committee are interested in this." Even though it was a work group of the Populations Subcommittee there were people on some of the others that were really interested in the quality issues.
MS. GREENBERG: And John was actually on the work group.
MS. COLTIN: So, we decided that it would accomplish its work through the full Committee and so that is why I basically reserved time on almost every full Committee agenda to bring in a panel.
So, instead of having a separate meeting on a separate date to bring those people in, I would use the full Committee meetings except for one evening meeting maybe which was actually done during the time when there was a full Committee meeting.
DR. MAYS: Actually one of the pieces is that there are other people that seem to want to know the race, ethnicity stuff which is why we have been putting things at the full Committee like the panel that was full Committee to bring everybody kind of up to speed. So, it is interesting, I have been struggling with --
MS. COLTIN: That panel was actually a quality panel. The focus of that --
DR. MAYS: No, the other one that we did, the second one.
MS. COLTIN: The first panel had been on what are the issues around trying to measure quality and look at disparities.
DR. FRIEDMAN: I am thinking since in fact it is right now a small number of people on the Subcommittee you know one way of handling it might be just to ask the folks on the Subcommittee if they are willing to spend the time.
DR. MAYS: But there is the bigger issue that has to do with this whole constellation of staff and having staff that are relevant to more than one thing. So, part of what also led me to think about it as a work group which was kind of what she brought up first which was actually my first thing is I think I can recruit staff who will do specifically this and then staff who will do specifically other things and I, also, think Susan has a day job already, too. So, it is like there are so many pieces to it that are evolving that I am just a little bit concerned that even Susan keeping up with all the things that if we were to answer everything now like we have got the primer to answer; we have got hearings, etc., that that is really part of where I thought about it.
MS. COLTIN: One of the other things to think about is you know, Marjorie has reminded us on a number of occasions that there is a pot of money for contractors and one of the issues that we have come up against each time we have wanted to write one of these reports is bringing somebody in who hasn't been with, except for the insular areas one where Dale had been involved all along, bringing somebody in who wasn't part of our hearings, didn't hear the testimony, didn't participate in our meetings and had to pull it all out of transcripts and spend probably as much time reading through the transcripts as they would have spent had they sat at the meetings and been with us is that if you know that your product of this work group is going to be a report think about hiring a contractor at the beginning rather than at the end, pay to have them come to the meetings and then write the report.
DR. MAYS: That is what I want to, also, get into today is what is the product and that may help.
MS. COLTIN: We haven't been using those funds really very much I don't think.
MS. GREENBERG: We have used them for the computer based patient record. We used Susan Conon definitely with the history.
MS. COLTIN: But I think this could actually be more efficient because they are either going to spend the time or they are going to spend it at the end having to go back through all the transcripts and create a thread which they would have gotten had they actually --
MS. GREENBERG: I think they tried to do that in Medicaid and managed care, but it got complicated, but I guess the thing about a work group is we have got to have three people. I mean you cannot have a work group with fewer than three people. So, are there three members who would serve on this work group and then --
DR. MAYS: I would ask the full Committee if other people want to join.
MS. GREENBERG: I am saying are there three members of the National Committee.
DR. MAYS: Oh, okay.
MS. GREENBERG: Who would serve on this work group.
DR. MAYS: I am going to take Dan's question now so I know. How many people here will stick with us?
DR. STARFIELD: Are you asking that question or are you asking whether they would be on a work group?
DR. MAYS: How many at the meeting would be a part of the work group? Well, I said, "Stick with us," meaning that I don't know what happens if your status changes whether you --
DR. STARFIELD: Stick with it means the Subcommittee sticks with it, but you don't mean that. You mean work on it?
DR. MAYS: Yes. Let me just be to the point. How many people here will join the work group?
DR. FRIEDMAN: I will be glad to contribute to it, but I am concerned about putting my name next to another work group, frankly.
DR. MAYS: Okay. We have Eugene. So, we have two.
MS. COLTIN: The reason I am not volunteering is because I am going off the Committee and to start --
DR. MAYS: We have two here and so I am sure I can pick up another one from the Committee. I am going to be on it. I am going to chair it.
MS. GREENBERG: I am just wondering how this would differ from the Subcommittee on Populations.
DR. MAYS: The way I think it is going to differ is that I think that people within the full Committee who I think may want to participate, and I, also, think unless I don't know, but there are lots of other things we have to do, and I guess I didn't think the Subcommittee had to do it every time.
MS. GREENBERG: It could just be the major project for the Subcommittee on Populations for the next, I mean you have got monitoring activities and the dissemination but it could be the major project. I guess what we need to do is --
DR. MAYS: Let us finish and go through it because I mean we do have other things.
MS. COLTIN: Plus, if you are going to be recruiting four new members, I mean you know, hopefully there will be someone else who is interested in this issue.
DR. MAYS: If there is difficulty in terms that we need to think about the structure issue we can talk about whatever it is that may be the concern, but I guess what I am saying is that it is a short-term plan and if for a year you want that way it is fine. I just think organizationally at least for me and for trying to get the resources to get the work done it seemed like a better structure, but there may be lots of things that I don't know. So, I have no problem with it. I just want to get the work done.
MS. GREENBERG: It just depends on what you see as the function of the Subcommittee
on Populations, and I think it is premature to really resolve that.
DR. MAYS: And part of it is we don't have everybody. Okay, so, let us go on then. We are going to put that on hold, but I like the suggestions that were made in terms of at least helping us to think about it.
We have to identify, I guess, what the issues are and what the parameters will be to work on this because I don't want us off in all directions on everything that comes up about race and ethnicity. I want populations or work group or whatever to try to make sure if there are issues that we do it, we integrate those into other committees as well as we reject some that may be really the purview of the other committee, and we act as the secondary commenter on those issues for them.
The issue that I raised yesterday which I think is a key issue, and other people please respond to is that now that we have this OMB guidance at least in terms of, I don't think at the federal level but at least at the local, state level there are lots of expectations about what it means to have filled out the census and to have state and local government, also, asking you about your race and ethnicity.
I think there is an expectation that we are now able to do something differently. So, where is the value in terms of health statistics of collecting this data on race and ethnicity?
Just to give you a little bit of the background, and I am hoping Susan will jump in here is that we were at a meeting which was done by Ken Kepple's office which is the National Center for Health Statistics. I guess he is with the local, is it state and local something or other is the name of his office? I cannot remember exactly?
MS. GREENBERG: Is he in the Office of Analysis and Epidemiology of the Health Promotion?
DR. QUEEN: Yes, he is OAE.
DR. MAYS: Oh, okay, underneath his name that is what it said. So, I thought maybe that was the name of the office.
MS. GREENBERG: There may be a little subbranch in there.
DR. MAYS: But as we sat at that meeting, it was like a great discussion because there were people at a variety of different affiliations there. There were academics there. There were people who were running research groups. There were people with community-based organization. There were the biostatisticians, and we all had to come up with what we thought were the ways in which to measure disparity because you asked in Healthy People 2010 to look at the notion of we had a set of goals; so, somebody has to say when you actually measured that you have made a change.
So, in terms of trying to understand disparity you could see from the discussion that people had a lot of expectations about what could be done, but that the unit of analysis is not going to allow it to happen to some extent.
So, I think that as we collect the data, the issue of how it is used and the ways in which we would like to see it used I think are going to be very important.
So, what I put down here is that that is kind of a big question. What is the value that the collection of data on race and ethnicity brings to health statistics that improve the health of US racial ethnic populations or the distribution of health in those populations?
I would say that for us that might be kind of a guiding theme of why we would want to hear from various agencies. Then under that it would be what are some of the issues.
One is, because if we are going to ask people to come in and update us, I think we should give them a set of questions. So, this really will form the basis of those questions.
First is on the collection and use of the data. How are race and ethnicity assessed? What agencies are doing it, and what are the internal guidelines that they are using for the use of the data, for example, in terms of how are they doing coding; how are they handling mixed race decisions and do they or have they requested a variance from OMB guidance, because I think that is important, also.
MS. GREENBERG: These are questions that you actually are going to want people to address in September, right?
DR. MAYS: Yes.
MS. GREENBERG: Is it too soon?
DR. MAYS: No, because I know that some people have already written what the guidance and implementation is to be in the newest branches.
MS. GREENBERG: We need a plan, I mean soon actually, for contacting the people. You were on the call yesterday, Susan, right, in which it was agreed really that, no, you weren't. That is right.
DR. QUEEN; I was in one part of it.
MS. GREENBERG: In the afternoon we talked about the September agenda. You see she wasn't on that part of the call, and what we agreed was that the Subcommittee on Populations will have much of, will have like I think --
MS. COLTIN: One-thirty or 2 o'clock to 5 o'clock.
MS. GREENBERG: Two o'clock to 5 o'clock on the first day, Monday.
MS. COLTIN: It is one-thirty actually to four-thirty-five on the first day of the full Committee meeting and then, yes, it is one-thirty to five and, also, one-thirty to four-something on the second day as well because we are fairly light on other presentations and panels and all that.
MS. GREENBERG: One-thirty on both Monday and Tuesday, but it would end earlier on Tuesday probably.
DR. QUEEN: And will you get panel presentations for those days?
DR. MAYS: Only from the federal agencies.
MS. GREENBERG: This is to bring in all the different federal agencies around these questions that we are now discussing.
MS. COLTIN: What I would like to suggest is that you only use one of those times on this topic, that what might make sense is actually to do one-thirty to five-thirty, use one-thirty to four-thirty to hear the testimony and the hour for discussion of Committee members following it and because we also need to respond to the request we got yesterday from AHRQ on providing guidance on the National Quality Report. I mean I think there are other activities of the Committee that we probably should be discussing the second day.
DR. MAYS: Oh, I see because we were going to try to do the hearings both days, but you are saying that what we need to do is that populations needs to have a meeting.
MS. COLTIN: I think we need to plan these other things. I think we need to make some recommendations for instance about what kinds of expertise this Subcommittee is going to need in order to take on the role that we just said we wanted to take on yesterday. I think there are a number of issues around what we said yesterday we wanted to do that need to be clamped, and this September meeting is going to be the only time to do that, and so, plus, you are going to start losing people that second afternoon. It always happens. It is supposed to adjourn at four, but I wouldn't be surprised if people start leaving by three-thirty. So, you are only going to have a couple of hours, you know, one-thirty to three-thirty, and that is probably adequate to address all the other kinds of things that we really want to address.
DR. MAYS: That sounds like a good balanced approach which is I like adding the extra hour so that we can have Committee discussion, and you see that is why I like this work group notion because then it has some separation. It is like, "Oh, I have this issue, and I am ready to use all the time," but it is like you have brought me back to, "No, you have a committee, also, to deal with or a subcommittee." So, okay.
MS. GREENBERG: So, we are talking one-thirty to four-thirty in which you would bring in these federal agencies, four-thirty to five-thirty subcommittee discussion.
DR. FRIEDMAN: The first day or the second day?
MS. GREENBERG: The first day and then the second day would be like one-thirty to three-thirty subcommittee breakout session basically.
DR. MAYS: And you want on that one-thirty to three-thirty, how much time do you want on quality?
MS. COLTIN: I think maybe one of those hours we probably should talk about the quality report and how we want to handle it. We should talk about how we are going to respond to the AHRQ request, what we think might work.
MS. GREENBERG: What we should say is at the breakout session of the Subcommittee on Populations and its quality work group.
DR. MAYS: We will slate in some of the things. We should make sure that you get the first hour so that even if we start losing people we take care of that, and then it is interesting because we have some integration issues. So, maybe that can be the second hour.
Dan?
DR. FRIEDMAN: In terms of D2 A1 which I guess would be the panel I am concerned about the level of the questions that we ask the panel to address and for example, Public Health Foundation recently issued essentially a questionnaire to all the states on similar general issues around race and ethnicity and we do a lot with ethnic-specific data, and we all but just tore it up and threw it out because it was just at a level of generality that we just couldn't really respond to in terms of what we just said. It may be a good idea to try to do a little bit of pretesting with what we are asking them, reality testing with what we are asking them to respond to before we actually ask them to respond to these particular items and for example, I am particularly concerned about how they use it and how is it assessed as the questions.
MS. COLTIN: Could you be more specific?
DR. FRIEDMAN: Finding out from the people who we are going to ask to testify whether or not those are questions that are too general for them to be able to meaningfully respond to.
So, for example, at NCHS, I mean one of the responses to that would be, well, we issue the following 30 reports every year, and those reports all contain breakouts by, you know, some of them are just race. Some of them are race and ethnicity. Some of them contain breakouts by Hispanic groups.
DR. MAYS: Then let me drop down because then maybe you should see very specifically I am asking about doing it not by just huge agencies but, also, specifically in terms of the particular studies. I think we need to make a set of decisions as to who comes in.
So, for example, if this is something that we would be more concerned about in the health interview survey versus NHANES; so, it is like given that we are not going to ask every person who comes in, I think there are certain surveys where this is probably more of an issue than others.
DR. STARFIELD: I think that is true. I would suggest, also, that we add some of the surveillance systems to it as well.
MS. COLTIN: You mean like the vital statistics systems?
DR. FRIEDMAN: If we can choose, but I mean CDC has a huge infrastructure of surveillance systems.
DR. MAYS: What I wanted to try to do since we have more than one panel on this is to try to do like things together, so maybe start with the population-based ones, maybe then after that do vital statistics because here is what I am concerned about which is that we bring people in, and they do things that are so different, and they do these presentations that we don't really get a clear enough idea about for systems that are similar how they are working and if you have three people and only one is asking for a variance, and the other two can accomplish what that other one, and that other one just asks for a variance just because they don't want to change what they are doing, you know, it is like we want to be able then to confront that.
DR. FRIEDMAN: I think that is a really good idea, and I would suggest let us make sure we include some of the surveillance.
DR. MAYS: Okay. What this is is a planning stage. So, I think what you should think about is that we will do as many of these in reason that we need to do and that maybe it is more the conceptual grouping of what we will put together.
MS. GREENBERG: My concern though is that it is August 15, today, and first of all we have to know whom do we want to invite to come and testify or meet with the Committee on the twenty-fifth and twenty-sixth or whatever twenty-fourth and twenty-fifth, whatever these dates are.
DR. MAYS: Twenty-fourth and twenty-fifth.
MS. GREENBERG: And then Susan needs to get to them pretty quickly.
DR. QUEEN; And unfortunately I will be out of town for a little over a week beginning next week.
MS. GREENBERG: Then as soon as you return, I guess.
DR. QUEEN; Absolutely.
MS. GREENBERG: A lot of people are going to be out of town and then we need to at least get them on the agenda and then we need to get them the questions. So, we don't have a lot of time to do that.
DR. MAYS: Can we try to walk through this and then at the end of it if you don't think we can do it by September then we won't do it by September? I am hoping we can, but if it turns out that there is something that is a problem, and we cannot fix it, then okay, but let us see if we can try while we have this face-to-face time because with e-mail we get less done.
The questions or the areas, are there specific concerns about them? Are we in the areas, and we can at least work on those? Are there things you want to add? Is there not a great format in terms of the questions that you want to do something else so that we can then decide that we need to work on that? So, in the event that we have to walk out of here I want to make sure that we have gotten to whom we want to get. We can work by e-mail on the questions.
DR. FRIEDMAN: Is it all of D or which are the questions in the outline?
MS. GREENBERG: And whom do they apply to?
DR. MAYS: Right now it is all the questions under Item D. With No. 2 it is like all of those are the kinds of issues we would be concerned about. Who we invite determines which that we would use, but in general for the topic of race and ethnicity and health statistics those are the kinds of questions.
Now, it would be different if we were inviting somebody from surveillance in versus we were inviting somebody from, but I was just trying to flesh out what a lot of the issues are.
MS. COLTIN: So, is your first interest to say, "Has there been a specific agency policy around this where an agency has decided in all of our vehicles we are going to do it this way?"? Is that what you are trying to get at?
DR. MAYS: A good question maybe to start with might be now that you have the OMB guidance, and this is kind of what we are responding to, how has that affected how you collect data on race and ethnicity, what you do with data on race and ethnicity and have you found a need, for example, to ask for a variance from the guidance and if so what? That is just a very straightforward, tell us what you are doing.
MS. COLTIN: Do you expect that their answers will vary depending on different parts of their agency, like for instance if you are talking to NCHS, and you are talking about people who run the vital statistics they may have a different answer than the people who do the provider surveys versus the people who do the NHIS.
DR. FRIEDMAN: Unfortunately, yes.
DR. MAYS: If you just go within NCHS and you take two surveys they will differ is my bet in the two surveys because the mission of the survey.
MS. COLTIN: That is why I am asking are you looking for answers at the level of each of those components within an agency, like what are you doing for vital statistics or are you asking whether that agency has adopted some uniform approach that they are requiring each of their components to adhere to.
DR. MAYS: I am more interested and other people should comment on this in the specific study because certain surveys accomplish certain goals and some surveys are used definitely in terms of for providers you are pretty dependent upon what the hospital or provider sends you. Vital statistics you know you get --
MS. GREENBERG: It depends on what instructions are you giving the hospital or the provider or the hospital about --
MS. COLTIN: Whereas the NHIS you can go into the house and you can actually ask somebody.
DR. FRIEDMAN: My guess is that there are going to be very few programs. I would be surprised if there are any in CDC that formally go to OMB and ask for a variance. Having said that I think that the extent of the variation in how the guidance is --
DR. MAYS: Or how they meet the guidance.
DR. FRIEDMAN: Exactly.
DR. MAYS: Okay, it may be less the asking for the variance. It may be the interpretation. That is very important because that may be the wrong question of asking about variance, and it may be can you share with us how.
DR. FRIEDMAN: What is the question you are now asking? What does the form look like?
DR. MAYS: Where the action or panels are and then we can talk about who we want to ask and then to back up we know who we want to ask, and we will know what the focus of those particular groups are and the questions I think we will know much better. So, thank you.
MS. COLTIN: Yes, that is what I was struggling about.
DR. MAYS: You see, I was doing it the other way of here are the questions, but we should probably do what group do we want to look at first and then we will know the characteristics of those groups and then we can tailor our questions to them.
Now, let me just say this, and maybe I don't have to do this. I thought we had to really ask Kathy Wallman to come in because we keep having things and we don't have her come in. She couldn't make it last time, and it is almost like she is the one that is in charge of like the guidance and isn't in all like due respect of her she should come in and --
MS. GREENBERG: She couldn't come to the last one but now if we are bringing in the agencies I think if she were there it might be intimidating.
DR. MAYS: Okay, but we are fine.
MS. GREENBERG: It is an open meeting. If she wants to send her staff person.
DR. MAYS: It is not her staff person. It is her there that I think would be the problem. Okay, because I had said that maybe we should have Wallman, Census, OCR and then move on to the next group of having specific studies but I guess we can start with specific studies.
MS. GREENBERG: I think we heard from Census.
DR. MAYS: As the update. They didn't actually say what, they spent more time on what their process was, but I am okay with not having to start there. I thought that was a politically correct thing to do.
DR. STARFIELD: Can I just step out one minute? I mean do we need to ask Question A? The answer is sort of obvious. What is the value?
DR. MAYS: I don't know the answer to that.
DR. STARFIELD: On the face of it the value of the collection of data is that you have information to characterize subgroups of the population by race and ethnicity. I mean that is --
DR. MAYS: Okay, now, remember you are in a specific discipline. There are people in the field who are jumping up and down and saying that race means nothing.
DR. STARFIELD: I understand that.
DR. MAYS: And that if you are going to do all your planning based on this social construct that if all you do is ask -- I will tell you what I am trying to get to. If all you do is ask about race and ethnicity and that is the basis upon which you do health planning, health care and health research then it is inappropriate.
DR. STARFIELD: I agree, but that is not my question. That is another question. It is if all you could have was race and ethnicity data would you be satisfied with that or would you think we should collect this? I mean you want to ask a very specific question if you want an answer on a specific question, but this is a much too general question. I mean the way this is written you say, "Yes, the reason to collect is to have data on these populations."
DR. MAYS: Eugene, are you back?
DR. LENGEVICH: Yes.
DR. MAYS: Sorry we keep losing power.
DR. STARFIELD: I just think the question isn't specific enough to get the kinds of information you want. I don't have any trouble with the subquestions, the one and the two, but it is the overall question that is the problem.
MS. COLTIN: It might be something like how does race and ethnicity data fit into your analysis of subpopulations on disparities.
DR. STARFIELD: Would you use it?
MS. COLTIN: Yes, I mean what else do you consider?
DR. MAYS: I think where we are going is that the assumption is that if you collect data on race and ethnicity and you do your analyses by these subgroups that you then know something that is important, useful, etc., and that is being challenged in the field, that along with race and ethnicity that you probably need to know things like neighborhood effects or some kind of contacts, that you need to know gender, that you need to know age and that you need to know either class or income.
DR. STARFIELD: But that is exactly right and is it enough for you to know race and ethnicity? If not, what else do you need? I would be really very specific.
DR. MAYS: So, the big push in surveys to have race and ethnicity and to use that alone in making a lot of decisions is really a problem, and what we are trying to get people to understand is that how you use it like in the primer that we are working on which all of you will get a copy of which is the primer of the measurement of health disparities you could take one example that shows you all the different ways that you need to think about that measurement.
MS. GREENBERG: This is coming out of what Ken's is doing?
DR. MAYS: Yes, it is coming out of what Ken is doing. I think it has very important implications to measuring things the way we measure them, and we are saying that we are measuring the health of racial and ethnic groups when we ask this question about what group they perceive that they belong to, and we are saying, I think if the United States thinks that it is really going to be able to make what do I want to say, helpful changes in the health of these populations it won't be nearly in terms of knowing what their race is.
MS. GREENBERG: I agree completely, but it seems to me that you really have two different streams of things that you are addressing here. One is, as I understand it, if you are in fact going to collect information on race and ethnicity, putting aside what other information you should, also, be collecting, how are you going to implement this OMB guidance? How are you going to collect that information, just the information on race and ethnicity because that is what the OMB guidance is about? What are you going to do with it, variances; how are you going to ask the questions, all of that; that is one whole set of questions.
The other is maybe it is the first one, but you are going to be doing this for a reason, and whatever that reason is do you feel just having race and ethnicity data is all you need or what else are you going to -- once you have got it, what else do you feel you need or what other data are you in a position to collect to try to then say something about this, but if you try to mix the two of them up it is going to be very confusing.
DR. MAYS: The question is what are you collecting, and it is almost like what Dan is saying. It is like show us the question and then the second question is if that is all that you are collecting based on the fact that the goal of this particular survey is X, Y and Z, can you tell me whether or not you can accomplish that goal in collecting this data or are there other data that you think would be better to help, no, I shouldn't say, better, would you assist you in meeting that goal.
MS. GREENBERG: What other data do you collect? When you analyze --
MS. COLTIN: I think you need some context for this. I mean I think if you were trying to say that if you are trying to look at disparities as one possible context in health care among different subpopulations what information do you use to characterize those subpopulations, income, education, what role does race and ethnicity play in how you characterize those subpopulations? Do you collect it? If so, how, you know, that sort of thing, but I think you need to put it into some broader context so that you know what else they have and what role race and ethnicity play in relation to those others. Are they using it as the sole mechanism to characterize or are they using it in conjunction with some SES variables?
MS. GREENBERG: These are very important questions and one that the Committee has looked at for years, but they were important before the new OMB guidance, and they are important after the new OMB guidance. So, they are almost, maybe they are complicated by the new OMB guidance because it has made things even more difficult, but they are really, this is a whole line of inquiry, I think, that is a different line of inquiry than what are you doing about the OMB guidance and what impact is it having on it and then how does it complicate things or whatever, but do you see what I mean? You have really got two separate inquiries.
MS. COLTIN: I think you need to do both.
MS. GREENBERG: I think both of them are important.
MS. COLTIN: One of them is a lot more work than the other. I mean one is just sort of baseline gathering what are the things that people are using. What does each contribute to their understanding of disparities in the population? Then go on and say, "Okay, now we want to focus in particular on how you collect information on race and ethnicity because the presumption is that it is going to play a role, an important role in understanding disparities.
MS. GREENBERG: Can both of these goals really be accomplished on that afternoon?
MS. COLTIN: I think we can find out what they collect, that they do collect income, that they do collect education, that they do or do not collect sufficient information about the geographical location of the respondent to do geo coding and understand the neighborhood. You know, that is not a lot of questions. That is maybe four or five questions you would ask them with very straightforward answers, I would think and then more detailed questions related to race and ethnicity, and I will tell you the reason I am going down this path is that you are starting out with the surveys and the population-based focus, but we are still stuck with this issue of whether we are ever going to get race and ethnicity into the --
DR. MAYS: I know.
MS. GREENBERG: And they are only going to do surveys?
DR. MAYS: That is where we are going to start. I hope that we will go all the --
DR. QUEEN: They are eliminating a lot of other data collection instruments.
DR. MAYS: No, we are only going to start with the surveys and work our way back and eventually we are going to get to the transactions, and it would seem to me that having this understanding about what role race plays and how we might want to take advantage of being able to link information from multiple instruments so that we would want to collect it the same way or multiple sources that you know we kind of have to work towards it, and we have to understand that if we are going to go in and say that we want information on the transactions about race that that may not be the only thing we want.
We may want education as well. We may find that it is really important.
MS. COLTIN: The characteristics of the provider or characteristics of --
DR. MAYS: You see that is where I am going with this. Why I was starting with the surveys is because I think it is the easiest start place, but I think what we have to do is really determine how big is this going to be and how do we wrap up each piece because one, you don't want to have a set of panels or hearing or whatever just forever; there are no linkages. It may be that if you really want to deal with each of the pieces you do a piece; you wrap it up; you do a piece; you wrap it up and then we do the work of connecting them, but like I said, this can be huge.
MS. GREENBERG: True. Now, when you are saying surveys --
DR. MAYS: I don't want it to be population-based surveys that are conducted by the Federal Government, not yet. That is exactly what I am not interested in, not yet.
DR. FRIEDMAN: Just to be clear they are not surveys that obtain data from the health care provider.
DR. MAYS: No, not yet because that is very different.
DR. FRIEDMAN: Random digit dial and household.
DR. MAYS: Exactly.
MS. COLTIN: All that is in the scope of the project.
MS. GREENBERG: The BRFSS is in this project.
MS. GREENBERG: Laura Johnson's work group has actually done some work on that. She probably would be the person to contact on that.
So, you want the NCHS surveys. You want CDC surveys.
DR. MAYS: No, I want to select from this group. These are just different ones.
MS. GREENBERG: What about HCFA survey?
MS. COLTIN: The MCBS would be the big one, right, the Medicare current beneficiaries?
MS. GREENBERG: Do they ask the information or do they just use it from their enrollment.
DR. MAYS: I think that is enrollment.
MS. GREENBERG: They got the enrollment information back in 02.
DR. MAYS: Let us ask first what they do and then we will know what category to put them in, but I just didn't generate the NCHS ones because I thought here at the table we can generate those and then I was just reminding us of others.
MS. GREENBERG: I hadn't realized that really this work, September what you are interested in is population-based surveys?
DR. MAYS: Yes. So, that is NCHS. I think we could start there.
MS. COLTIN: Do we even want MCBS? That is not really a population-based survey.
DR. MAYS: I think we need to ask the question of how they get their data.
MS. COLTIN: The MCBS, the Medicare current beneficiary survey only covers people who are on Medicare as opposed to the entire population. So, I didn't know whether you want to characterize it as -- it is a subpopulation. Do you want to include subpopulations?
DR. STARFIELD: We all know what NCHS does. Do you really need to include NCHS?
DR. MAYS: We don't know what they are going to do. I think part of the problem is that they are going to do different things depending on which survey it is, and this whole issue of how we used to be able to analyze data across data sets and stuff like that, I don't know necessarily if it is going to be as easy.
MS. GREENBERG: We have got MEPS, but MEPS is based on NHIS, basic demographics as collected in the HIS, right? I think we should have the HIS as one of them.
MS. COLTIN: Absolutely, and I think you should have NHANES, also.
MS. GREENBERG: That going to be my next one.
DR. STARFIELD: It is not what you do. It is what you are thinking on these things.
MS. COLTIN: It is both. What is the baseline and how is it likely to change?
DR. MAYS: How do you know what they do?
DR. STARFIELD: You mean in terms of the new guidance? No, I don't know that.
DR. MAYS: That is more what I want to know is what they are doing.
DR. STARFIELD: I guess I am just reacting to the wording of the question on the paper, and it is misleading.
MS. COLTIN: I think we do want to know what they do now, and how it is going to change because that raises the questions of how are you going to trend information over time once it changes. So, we need to be able to identify if it is changing or not.
MS. GREENBERG: You want to ask these people, also, what you get besides race because they get quite a bit.
DR. MAYS: So, let us decide which ones we want to do, NHANES, NHIS. It would be nice if what we did was if we are going to do NCHS that the we took the NCHS ones that kind of are similar. The National Survey of Family Growth?
DR. FRIEDMAN: That is awfully important.
DR. MAYS: Every survey is important to someone.
MS. GREENBERG: But I mean it is mothers and babies and all that stuff. It, also, is supposed to use the HIS as a sampling frame and it over samples minorities.
DR. FRIEDMAN: I think it is not the sampling frame. It is the questionnaire that is the issue because they use the same questionnaire.
DR. MAYS: It is the same people, but it is a question of, I am sorry what was the other one?
MS. GREENBERG: NHANES and NHIS.
DR. MAYS: All right. How much do you think we can handle during that time?
MS. COLTIN: I think if we have very crisp questions --
DR. FRIEDMAN: They should be able to coordinate. They should be able to come in. I mean hopefully it should not take a very long time.
MS. COLTIN: No more than 20 minutes each.
DR. MAYS: What they are going to do is to want to present data to illustrate.
MS. GREENBERG: Maybe we don't want them to do that.
DR. MAYS: I think they are going to have to tell you why they are not doing something probably because they are going to demonstrate to you the small cell size and if you are doing this way is it the same as if you do it that way, and I will bet you that that is really part of what they want to do.
So, should we say 20 minutes tops for each one?
MS. COLTIN: I would say tops.
DR. MAYS: If I say 15, they will take 20. So, let us say, 12 to 15.
DR. QUEEN: It depends on which ones you want to have.
DR. MAYS: We have just done the first three. That is why I wanted to know time. We have a panel that can go from one-thirty to four-thirty. So, I think we can do --
DR. QUEEN: You said NHIS and NHANES and what was the third?
DR. MAYS: The National Survey of Family Growth.
DR. FRIEDMAN: I would suggest that on the same panel we include BRFS.
MS. GREENBERG: Behavior Risk Factor Surveillance Survey. That would be a panel.
Are there any other major surveys? What about the youth --
MS. COLTIN: I was just going to say --
DR. FRIEDMAN: That is a good point.
MS. GREENBERG: The Youth Risk Behavioral Survey.
DR. STARFIELD: There are hundreds of surveys like the adolescent survey. I mean there are just hundreds of them.
DR. MAYS: That is out of NICHD. NIH gets to be very different because it is like even though they are sometimes, depending upon the level of contracts the investigators, they are grants, and they say that they do whatever they want. There is more surveying being done at NIH than at CDC for sure and more money going into it, and it is really out of the control of the department. They are RO1s but even at the level of when it becomes a contract as investigators we still kind of have the last say so.
MS. GREENBERG: NIH is not used to reporting to the national committee. So, if you can get them to come in --
DR. MAYS: It is a little different. That is why I don't want to start there.
MS. GREENBERG: You could get Ruth Kirsten to come in and ask her what she thinks it should be or I would bring the branch people in who actually are working with the specific study. For example, you would bring in somebody like Burt Coberth who does the epi studies or you would bring in the Kessler studies where they are doing both national and international studies.
DR. STARFIELD: Wouldn't you want to know what NIH directors or whatever they are think they should get I mean because --
DR. MAYS: No, because it won't make a difference. Their opinions don't matter because we have RO1s, but they do matter, I mean NIH does have directives. You know anything that is relevant to women has to include women. NIH can set policy, and the policy currently isn't about how you ask the question but who you include.
MS. COLTIN: We are starting to see some of that with some of the private foundations as well, and I know when we went in for funding recently on a large survey grant from Commonwealth and RWJ they told us they wanted us to include income in our survey.
MS. GREENBERG: Did they tell you how they wanted you to ask it?
MS. COLTIN: No, but they said that they wanted us to include it, but I mean they starting at least to say what you have to ask.
MS. GREENBERG: Are your beneficiaries going to want to report income to you?
MS. COLTIN: This isn't a beneficiary survey. This is a population.
DR. MAYS: But we know that sometimes they ask if income will cause some people to not want to tell you.
MS. COLTIN: They want us to collect income, and we proposed to them that we would geo code the data, and they accepted that. That is the mechanism we are going to use.
MS. GREENBERG: So far we have five surveys. What about MEPS? I know MEPS uses the HIS sampling frame, but I think it is a very important survey.
DR. MAYS: Where do you get your race and ethnicity from.
MS. GREENBERG: They probably use the HIS survey. They use the data but then they may get additional information and I think I would have them come in. Also, they are going to have maybe because they are looking at health insurance, etc., they may have some different issues with the analytic impact of this new guidance.
DR. MAYS: MEPS is population based?
MS. GREENBERG: Yes. It is the main survey.
MS. COLTIN: Then I think that in fact it is going to be the main vehicle for a lot of measures on the national quality report.
DR. MAYS: We are at six now. I think that with discussion and with time to get things started and the AV and everything else I think that should do it.
MS. COLTIN: I think we should get CMS in there with the current Medicare beneficiaries.
DR. MAYS: The MCBS to have them present?
MS. COLTIN: Yes. We should have them be on the panel.
DR. MAYS: It should be educational for them.
PARTICIPANT: This is two panels at this point that we are looking at?
MS. GREENBERG: This is one, really.
DR. MAYS: I am sorry, yes, I don't think you would have them all. What you do is like take probably the VMCHS, the CDC and let them talk and then take discussion and have a break and then have the next group set up and talk and have discussion and then bring it to a close.
You know what, the one thing that I, no, we don't have enough time for that. I was going to say that you could have someone who after hearing these two panels to comment, somebody at the level of a big agency like NIH or something as to, you know, but I think it would just turn into them being political. So, it may be a waste of our time.
DR. FRIEDMAN: Do you want Steve to --
MS. GREENBERG: We are not going to do provider surveys yet. When we do, we should have --
DR. STARFIELD: What are the seven? We have got NHIS. We have got --
DR. MAYS: NHIS, NHANES, NSFG, BRFSS, WRBSS, MCBS and MEPS, Medicare Current Beneficiaries and MEPS.
DR. JACKSON: You don't think the idea of NCI, NIH because of other issues --
DR. MAYS: We will do it another time. They are investigator initiated quite a bit. So, it really is very different in terms of you couldn't ask them the same questions.
MS. COLTIN: Are we scheduled to, also, have time on the November agenda?
DR. MAYS: We can.
MS. COLTIN: I mean for a breakout. So, one of the things we might want to decide is do we want to say that at the November breakout we are going to want to run through these same questions but the groups that we are going to want to bring in are now some other subset, the provider surveys perhaps or the surveillance systems or the vital statistics system.
DR. MAYS: Let us figure out now what would make the most sense to the follow-up. I almost think that since you have introduced MCBS that it is almost like maybe the providers would be good next because they really dovetail I think well, unless you see another group. I mean we are going to get to surveillance, but I think --
MS. COLTIN: The only other one that we don't have on this list that could potentially be on this list is caps because there are Medicare caps and commercial caps and the Medicaid programs do Medicaid caps.
DR. STARFIELD: Who would that be? Would that be the AHRQ?
MS. COLTIN: AHRQ actually develops the survey instrument.
DR. MAYS: Which are you thinking about?
MS. COLTIN: I was thinking about putting caps under AHRQ, along with MEPS put caps.
DR. MAYS: In September?
MS. COLTIN: Yes.
DR. MAYS: How? We are up to eight.
MS. GREENBERG: That is 3 hours.
DR. MAYS: I guess I don't believe that when you bring them before the Federal Government and they are going to be on the record and it is their time that they really adhere. So, it is okay. Just recognize that I think we are going to run over.
DR. STARFIELD: But the truth of it is you could get all this information in writing. You don't want to do that, but you could. So, as long as they bring something in writing we can cut them off.
DR. MAYS: Okay.
DR. FRIEDMAN: I think the NCHS surveys we should ask, there is no reason why those folks cannot coordinate, couldn't prepare a little matrix.
MS. GREENBERG: You know what while I have been here I have read on my e-mail that we are putting together a meta data registry at NCHS. I am very happy to hear about that in which all the questions, but it probably won't be done by then, but yes, sure, they can put this together quickly probably.
DR. MAYS: All right. Let me make sure I understand how you want to do those two. Is it the same person doing both or two different people?
MS. GREENBERG: The Medicare beneficiary survey?
MS. COLTIN: No, I am talking about caps. The demographic questions in caps are asked the same way whether you are doing Medicaid caps, Medicare caps or commercial caps, but there are additional questions that aren't always asked in all of them. In other words when you are asking about race and ethnicity you are asking about race and ethnicity exactly the same way in all three, but you may ask about language in the Medicaid one and you may not ask about language in the commercial one. Do you know what I mean?
DR. MAYS: Is your question about who can represent that would know all of the permutations?
MS. COLTIN: It is Chris Crofton and Chuck Darby, one of the two of them. I don't know which it would be, but the two of them can decide.
DR. MAYS: So, we will put caps in also.
Let us quickly go through who we think should be asked for these so that there are names.
Susan, are you hearing this?
DR. QUEEN: Yes.
DR. MAYS: I just want to make sure because we are about to really do the name now.
Who would be the person that you would think of that would be the best person in terms of the HIS?
DR. QUEEN: Jennifer.
MS. GREENBERG: Jane Gentleman is actually the head of the HIS. You already had Jennifer.
DR. MAYS: Who is the person who actually uses it and actually is kind of the hands on person?
MS. GREENBERG: You mean the person who --
DR. MAYS: The people who produce the report.
MS. GREENBERG: Right and that is Jennifer, not Jane Gentleman. Jennifer is the Associate Director for Science. She is not head of the HIS. She certainly is very involved in the redesign. It should be someone in the division I think. Jennifer is the Associate Director for Science for the entire agency.
DR. MAYS: The person I know who does the analyses in this area and that is writing the implementation on race and ethnicity program is actually Jacqueline Lupus.
DR. QUEEN: Is she still in HIS?
DR. MAYS: I think so. She is the one that is writing the guidelines.
MS. GREENBERG: We had a presentation at NCHS a few weeks ago. The presenters were Jim Reed on biostatistics and Jacqueline Lupus on HIS.
DR. QUEEN: Jackie would be good because she is very hands on.
MS. GREENBERG: Jackie could talk to Jane Gentleman or whoever but I think Jackie probably.
DR. MAYS: That is the one I know that has the most hands on, and what about in NHANES?
MS. GREENBERG: Cliff Johnson has just been named, I am very happy to report, the director after being acting director many, many times.
DR. MAYS: So, who is the hands on person?
MS. GREENBERG: I would go to Cliff and find out.
DR. MAYS: Okay.
MS. GREENBERG: You know Cliff, Susan?
DR. QUEEN: Yes.
MS. GREENBERG: The person who is actually working on this meta data registry who maybe could help put together, you know make this his first focus or something is Lou Berman.
DR. QUEEN: No kidding?
MS. GREENBERG: Do you know Lou?
DR. MAYS: Not personally, but I know who the person is. What about in terms of the National Survey of Family Growth?
MS. GREENBERG: Who is the head of that these days?
DR. MAYS: I know less about that one.
MS. GREENBERG: It is in the Division of Vital Statistics.
DR. QUEEN: Is Angini still on that? Do you know Angini Chandra?
MS. GREENBERG: I think she went to NACHO.
DR. MAYS: That one it looks like we don't have recommendations.
DR. QUEEN: Bill Margini?
DR. MAYS: That is a good person. Okay, BRFSS.
DR. FRIEDMAN: That is kind of a problem because they have lost two directors now. I mean the current person is Eve Powell Griner. I am not sure if she is going to be there in September or not. So, I would start with Eve.
DR. MAYS: Do you know that person, Susan?
DR. QUEEN: No.
MS. GREENBERG: Eve Powell Griner. She is on e-mail.
DR. FRIEDMAN: She is on e-mail and also, when we contact her, I think with sort of a little asterisk next to BRFS that we should ask her to respond to because essentially each of the states can adapt even though Eve will probably say that they cannot. Each of the states can adapt the race and ethnicity question.
DR. MAYS: I don't think they can adapt that question.
DR. FRIEDMAN: They can adapt. They can add additional --
DR. MAYS: Oh, they can add more. They have to put the basic, and they can add more.
You know what might be useful then is to ask her if she has either a compilation or has some examples of the additional questions that are asked by some states. I am thinking of like California, Hawaii, oh, yes, because the Hawaii, California, Hawaii, Florida, New York and Texas. Those are probably five of the types of states that you would get into some of these differences. Okay.
MS. GREENBERG: Probably some states ask more of the socioeconomic or demographics.
DR. MAYS: Massachusetts is known for, I mean they have lots of, but I think Massachusetts asks it in some I think very different ways. They don't ask just like income in terms of money. I think they ask it and you do geo coding with it.
DR. FRIEDMAN: We do a lot with that.
MS. GREENBERG: Education?
DR. MAYS: Yes, they are very good
MS. GREENBERG: Do they ask education?
DR. FRIEDMAN: BRFS, yes, I believe so. Yes, they do.
DR. MAYS: Can we then ask the person that is going to present to us to pick states like for the BRFSS they really should pick Massachusetts and California.
DR. FRIEDMAN: On the BRFS, unfortunately what we do in terms of augmenting it deals more with language than with additional ethnicity questions.
DR. MAYS: But you, also, have done geo coding with it, right?
DR. FRIEDMAN: Not with the BRFS because all we have is the phone number.
DR. MAYS: Did you do the YRBS?
DR. FRIEDMAN: YRBS is school based.
DR. QUEEN: Is Eve in Atlanta?
DR. FRIEDMAN: Yes, she is.
MS. GREENBERG: She would be in the chronic disease center, I guess.
DR. MAYS: And do we ask her in terms of YRBSS, too?
MS. GREENBERG: That is in the Division of Adolescent Health, but that is probably, also, chronic disease. You know, Susan, there were those, well Jim Scanlon would certainly know, but there have been several data council meetings about all these different estimates on substance abuse.
DR. QUEEN: Yes, there is a work group.
MS. GREENBERG: There is a work group, and there is someone on that from the YRBS.
DR. QUEEN: Okay, I know Walt.
DR. MAYS: There is the SAMHSA study, but we will do the SAMHSA at another time. I don't want to put it in this group.
Okay, do you want to do November now while we are thinking?
MS. COLTIN: Don't we need to get contact people.
MS. GREENBERG: I just started getting nervous when you mentioned November because the meeting is the fifteenth and sixteenth and my son is getting married the eighteenth.
DR. MAYS: Do you know Steve Cohen, Susan?
DR. QUEEN: Yes.
DR. MAYS: We are still in September. We have Steve Cohen.
DR. FRIEDMAN: Steven isn't Steven B, right?
DR. QUEEN; What did you say?
DR. FRIEDMAN: We have got several different Steve Cohens running around.
DR. MAYS: He was just making sure which Steven. Steven B., he is saying and then MCBS. Check with Carolyn Rimes. She could help you with that and then what did you say on the caps?
MS. COLTIN: I would start with Chris Crofton. It is either her or Chet Garvey, but I would start with Chris Crofton at AHRQ. Chris with a C.
DR. QUEEN: Is that a female?
MS. COLTIN: Yes, Crofton. So, it is C. He was saying her e-mail would be ccrofton@ahrq.gov or Chuck Darby, D-a-r-b-y.
DR. QUEEN: Okay.
DR. FRIEDMAN: If you have any trouble he sits about 100 feet from me. So, you can call me.
MS. GREENBERG: Stan can be of assistance if you have any problems because they sit near him.
DR. MAYS: Okay, November. Let us do November names and then what we will do is I will work on the questions and try to get the questions out for people to look at and comment on and then --
MS. GREENBERG: We could be working on the questions while Susan is on vacation.
DR. MAYS: Yes, exactly and then I want to make sure we save a little time to talk about the work group on quality in terms of your panels if there are specific things you need relative to that.
Okay, so, I think we should be doing okay.
November we said the administrative data sets?
MS. COLTIN: I think we were talking about the providers.
DR. MAYS: I am sorry, provider data sets, provider surveys.
Okay, which ones? I think you should plan for 3 hours and not more. So, you should plan on 2 hours and that is it. So, we cannot do as big of a time until we get closer to looking at what it is like. I will guaranty you that at least we can have our breakout time but I don't want to guaranty you that you can have 4 hours because I think November is going to be very busy.
So, I will just say it now, no eight.
MS. GREENBERG: The thing is that provider surveys get race. The national hospital discharge survey gets race. They almost never get ethnicity. For example, in HCUP is a compilation of state hospital discharge surveys. In the State of New York it is required, that doesn't mean they do it, that you ask the patient. It is not supposed to be observed. That is part of their rules, but they are much more limited in what they can do and whether any of them, I guess are they changing their survey forms to now ask?
DR. MAYS: We don't know. We don't want to bring people in just to be told they don't collect it. You want to do some kind of scrutiny. We know they at least attempt to collect it.
MS. GREENBERG: Where, in New York?
MS. COLTIN: All over.
DR. MAYS: Oh, the state ones. Barbara if they don't collect it you want to know something about what they perceive would be the barriers in terms of cost and why they don't and what has arisen that has caused them not to, whether somebody is suing them.
MS. GREENBERG: We know the answer to that. We have had hearings on this.
DR. MAYS: Oh, okay.
MS. GREENBERG: They do collect race and ethnicity in the hospital discharge survey and I think you do want to know what are they doing about this new guidance and provider surveys are attempting to implement the new guidance. You see the question is it is one thing to implement by changing your questionnaire. It is another thing to actually try to provide some educational materials or try to do something that might make it work.
DR. STARFIELD: They don't have to worry about the guidance if they don't collect the data.
MS. GREENBERG: But they do collect it. Chris is the person for the hospital discharge survey and Kathy Burke would be the ambulatory surveys.
DR. STARFIELD: But they don't collect it, I don't believe.
DR. MAYS: I think they do. I think I have seen reports that come out.
DR. STARFIELD: I have one with me. I have the 1999 survey.
MS. GREENBERG: Now, I cannot tell you how good the response rates are or whatever.
DR. MAYS: HCOP would be Alex Hauser but I think we should save the HCOP for administrative data sets because HCOP comes from the states from administrative data sets.
MS. GREENBERG: Not all the states use the UV92. Some of them have their own survey forms. The majority use the UV92. Even then they may not get it right off from the payer. They may get a variation of it. It is a survey.
MS. COLTIN: I thought they got it from the hospital. I thought they all used the uniform hospital discharge data set. Do we know what HCOP uses?
MS. GREENBERG: So, is it hospital discharge survey? That is different than it being an administrative, you see I thought of it more as administrative. That is why I was bringing it up.
I don't see how we could say that we are going to include the hospital discharge survey but we are not going to include HCOP.
DR. MAYS: We have four, and so far we only have two.
MS. GREENBERG: What about the National Nursing Home Survey? I mean there you are interviewing sometimes family members and you know what have you. I think minority health issues in nursing homes have been sorely neglected.
DR. MAYS: That is really interesting what you call and what your grandmother would let you call are very different sometimes when they are interviewing the family.
MS. GREENBERG: And then again they may just get it from the nurse, who knows, but I think if you are doing provider surveys you should look at the National Nursing Home Survey. Who is in charge of that these days?
DR. MAYS: Susan, do you know that one?
MS. GREENBERG: Kathy would know.
DR. QUEEN: I don't.
MS. GREENBERG: Kathy or Bob will know.
DR. MAYS: Okay, so we can do one more. Do we do HCOP or not? So far we have --
DR. QUEEN: National Hospital Discharge Survey.
MS. GREENBERG: Exactly, the ambulatory, the nursing home, okay, so that is it.
DR. MAYS: Are there any other provider surveys?
MS. COLTIN: They do. They use MDS an OASIS, and if you --
MS. GREENBERG: There you are getting sort of more into administrative.
MS. COLTIN: I would argue that the UHDDS is not that different from MDS. I mean MDS starts out as a survey form that gets filled out. Then it gets entered into software that CMS has provided, and it becomes an administrative data set. Isn't that what happens with the HCOP data? What makes it different?
DR. MAYS: I am afraid to put a fifth one on. It would be two because it is OASIS which is the home health as well as MDS which is the nursing home. I mean if you are going to do the nursing home survey you should do MDS because they go together and you want to be able to understand.
You could have one panel on, this can be maybe shorter actually.
MS. GREENBERG: They are not collecting education. I mean they are much more limited.
DR. MAYS: I think 12 to 15 minutes is almost like a lot. So, give them about 12 minutes.
MS. COLTIN: So, we have got six. That is not terrible.
MS. GREENBERG: OASIS and MDS and Carolyn can definitely help you with OASIS and MDS. Susan, are you still there?
DR. QUEEN: Yes. OASIS and MDS and I thought I heard a third.
MS. GREENBERG: No.
DR. MAYS: Let us make sure you have everything. Household discharge, ambulatory, national nursing home, HCOP, OASIS and MDS. So, those should be the six.
MS. GREENBERG: And when you are talking ambulatory you have got like three surveys there. You have got the outpatient. You have got the physicians' office. You have got outpatient and you have got emergency departments.
DR. QUEEN: Okay.
DR. MAYS: Did you have names for MDS or OASIS?
DR. QUEEN: Yes.
DR. MAYS: Okay, great.
DR. QUEEN: This is for November that we are talking about?
DR. MAYS: Right, and that obviously is going to require different questions.
Okay, let me see if there is anything else I need to worry about in here?
We have just done November. Let us skip this. What is it is that I thought more people from here were at APHA and then we could ask some of the people who come to APHA, but it is like last I polled you don't go to APHA. Barbara isn't going to APHA. Kathy isn't going to APHA.
DR. LENGEVICH; At the September one we haven't actually gotten from Carolyn and Helen Bursten. Did you want to have them come in for a few minutes and say something formal or do we want to do it informally so we don't waste time at the September meeting?
MS. GREENBERG: What he is saying is we heard from Tom Riley. There were a few
other people who also wanted to --
DR. MAYS: Would you want them to come to our subgroup?
MS. COLTIN: I think the second day we should have some people from AHRQ come in and talk.
DR. MAYS: To the subgroup or are you talking full?
MS. COLTIN: The subcommittee.
DR. MAYS: Okay.
MS. COLTIN: We are talking about how we are going to provide the advice that they are looking for and that can be done either through the full subcommittee or could be done through a work group on quality that would include not only people from this Subcommittee but any of the other subcommittees that would like to be on it.
Right now we have a work group on quality. The only person who is not on this Subcommittee is John.
MS. GREENBERG: We have that time. Does the work group on quality want to meet?
MS. COLTIN: I think we need to think about how this is going to be structured after January because I am not going to be here presumably. I am not anticipating being here beyond January, let me put it that way.
MS. GREENBERG: We will be pulling new members by then hopefully and that means Barbara won't as well and we have already lost Lisa. So, the only people left on this work group are Paul Newacheck.
MS. COLTIN: Who is begging to be taken off the committee and John Lumpkin, and I don't know whether Gene ever decided whether he wanted to formally join that work group or not, but he certainly would be welcome, but people who have identified themselves as formally as members of that work group we have to assume there are only two left after Barbara and I leave.
MS. GREENBERG: We have to assume that there is no way, I mean provided Barbara and Kathy are willing to stay with the Committee until replaced because they do have the option of resigning though I am hoping they wouldn't do that, but provided that they stay until they are replaced I think the assumption has to be that we would be recruiting two new members who have expertise in this area, other expertise, too, but because we are losing three, really, Barbara, Lisa and Kathy.
So, I would say first that we need health services research. We are losing our health services researchers. So, it would certainly be reasonable for health services researchers who have experience in outcomes. I think Martha Gold is a very good suggestion. I don't know that her name has been recommended.
DR. STARFIELD: It has.
DR. MAYS: She is willing to serve and has been nominated.
MS. GREENBERG: What about having both Martha and Heather? You see we never had Heather before because we had too many people from Massachusetts.
DR. STARFIELD: You ought to think of the other person I have been suggesting, Ed Wagner.
MS. GREENBERG: We tried to get him in the past so many time.
DR. STARFIELD: He would be very good.
MS. GREENBERG: Who knows, maybe he is --
DR. MAYS: So do we get the other two people with interest in the other areas that we have to cover? Does population get everybody?
MS. GREENBERG: Who is going off? We have got all of the people who have to be replaced are populations people.
DR. STARFIELD: I would try Ed Wagner again because you know these people as they change phases in their lives --
DR. MAYS: All right. We have a little bit of time left.
MS. COLTIN: How about Andy Nelson from Health Partners?
MS. GREENBERG: We don't have too many people from Minneapolis.
MS. COLTIN: Janet Fowles.
MS. GREENBERG: She would be really terrific. I mean she is a good worker. She is very knowledgeable on race and ethnicity issues. That is two for one, and she is a health services researcher.
DR. MAYS: That is three for one.
MS. GREENBERG: And managed care.
DR. MAYS: That is four for one. Keep going.
MS. GREENBERG: We should go after that person really. We had her on our panel on race and ethnicity.
MS. COLTIN: We had her on one of the quality panels, also.
MS. GREENBERG: Ed Wagner, is he still at Puget Sound?
PARTICIPANT: Yes.
DR. MAYS: Susan, is there anything else that you need to work out before we leave on your two upcoming panels?
MS. COLTIN: There are two panels, one on patient safety, data for reporting on patient safety and one on data for mental health quality measures, not just mental health but mental health and substance abuse, what we have been calling behavioral health which encompasses both and we are definitely assuming that the behavioral health panel will be in November.
DR. MAYS: How long do you need?
MS. COLTIN: An hour and one-half for that one.
DR. MAYS: For the actual panel.
MS. COLTIN: Right.
MS. GREENBERG: That would be the full Committee?
MS. COLTIN: Right. Behavioral health is a bit broader. If you want it specific I think mental health and substance abuse, but we are talking to the full Committee. What I was saying was yesterday we definitely put it on November, but we also said that if the CIO didn't work out we wanted to plug it in in September. So, what I asked Stan to do was to check availability for both dates.
DR. MAYS: How much time though?
MS. COLTIN: An hour. We could do it in an hour and I think we could also do it in an hour and one-half.
DR. MAYS: You are on the Executive Subcommittee, too. You can look out for it when it comes down to getting feedback.
Anything else?
MS. GREENBERG: Shouldn't we actually bill this as from one-thirty to two-thirty on Tuesday, September 25th as a meeting of the work group on quality?
MS. COLTIN: No, because we are talking about --
MS. GREENBERG: Should it be a subgroup of the population subcommittee, and your agenda will indicate that the first hour is, you see if your first hour is on quality John probably could stay over for that, too, and what did we say, 2 hours?
MS. COLTIN: But as Stan was mentioning AHRQ would also like to get some advice about the disparities report that Tom referenced yesterday as well, and so I think --
DR. MAYS: Carolyn may or may not, could Carolyn come for that?
DR. LENGEVICH: For the disparities? Probably Carolyn and Helen Bursten.
MS. GREENBERG: Didn't she already talk about the disparities report last time? What we are talking about is more the mechanics. Would they want us to do the same thing with the disparities report?
DR. LENGEVICH: Right, basically yes.
DR. MAYS: But should that be a request that is to just the Subcommittee or should that be at the discussion to the full Committee? She just wasn't available yesterday or what is the deal?
DR. LENGEVICH: I don't know what happened. She was supposed to call at 1 o'clock and for some reason she didn't, and I don't know why.
MS. GREENBERG: Is Helen yet a third report.
DR. LENGEVICH: No, Helen and Carolyn are one. It is the same thing you are doing for Tom.
MS. GREENBERG: That really needs to go to the Executive Subcommittee like this came to the Executive Subcommittee.
DR. MAYS: Okay. So then that is a conference call.
MS. GREENBERG: Probably. I mean you can have the discussion with them, but I think --
MS. COLTIN: Then maybe what that second day meeting at the end should be is a meeting of the Executive Subcommittee rather than a meeting of the Subcommittee on Populations.
MS. GREENBERG: But populations has stuff it has to discuss.
MS. COLTIN: The total agenda for the afternoon of the second day is how we are going to provide this expert advice. You are talking September now, right, the second day, the day where we have 2 hours or 2-1/2 hours whatever it turns out to be, one-thirty to three-thirty. The total agenda for that is how to provide this advice to AHRQ. The only other --
DR. MAYS: We had the integrated issues from the other subcommittee. For example, privacy wants to talk with us.
MS. COLTIN: I thought 1 hour was quality and 1 hour was -- I think he is going to be ready by that point because he is having this hearing. So, he has already said that they want to have a discussion and they want to give us some things in terms of privacy and I think racial and ethnic groups and so that is why I have down here these other integrated things.
I think we probably want to give them some things in terms of quality, too. You know we are going to have a presentation at that same meeting about the record linkage issue.
MS. GREENBERG: Yes, the GAO study.
MS. COLTIN: And feeding into that, that is where a lot of the privacy issues come up. Either way we are going to be keeping somebody for an hour. If we decided that we were going to use the first hour to talk about the relationship with AHRQ and have it really be more the Executive Committee everybody who is not on the Executive Committee is going to be waiting around for the second hour to talk about the integrative issues. If we do it the other way around and we meet with privacy then John is going to be sitting around waiting unless he wants to be part of that, too. It might make sense to do the integrative issues first.
DR. MAYS: I think it would and then we can let those people go and then the others stay.
MS. COLTIN: So then it may be at that point it should be the Executive Committee as opposed to the Populations Subcommittee, the last hour.
DR. MAYS: If we are going to talk about the issues then I think it is definitely that is the way it should be.
MS. GREENBERG: You are suggesting that the Population should meet from one-thirty to two-thirty and the Executive Subcommittee should meet from two-thirty to three-thirty?
MS. COLTIN: Right, two-thirty to three-thirty or two-thirty to four, whatever.
DR. MAYS: Unless there is something else that is compelling that we cannot do by e-mail, I really want to thank everybody and thank you for giving us time early, and I want everybody to get to their plane and travel safely.
(Thereupon, at 3:26 p.m., the meeting was adjourned.)