[This Transcript is Unedited]
Room 425A
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC
Introductions, Review Agenda - Daniel Friedman, Ph.D.
Review Outline and Schedule for ICIDH Report - Paul Newacheck, Dr.P.H.
Discuss Future Subcommittee Topics and Priorities - Daniel Friedman, Ph.D.
MS. GREENBERG: -- I think part of the purpose of this document was to kind of alert the Secretary, et al., that you have an advisory committee who is actually addressing some of these issues that may be, you know, a number of issues that you may be wanting to have a consultation on or whatever in the future. We are already looking at those, but we could look at others.
I personally would recommend saying something about racial/ethnic data and disparities because it is certainly under discussion -- and it was an issue in the Medicaid --
PARTICIPANT: I remember from the conversation, John Lumpkin had reservations about -- he thought that people who make decisions whether to give or not to give healthcare would look at the race item and make a decision on that.
DR. FRIEDMAN: What I suggest we do is be somewhat flexible around how much time we spend on each. The subcommittee structuring the activities, the function of the ICIDH report and -- Kathy mentioned she has to leave at 3:00. So, what I would suggest that we do is start by spending some time on the subcommittee structure and activities so that we can get the benefit of Kathy's input because she has been on the committee for, lo, these -- how many years?
Let me just -- I am a facilitator here. I am going to also mention how I conceive of the issue. I think there are two different related issues, one of which is how the committee structure fits business and then second, what it looks at, which are not independent issues. I think that in the past year or two, there have been issues around subcommittee participation and my sense is that it is sort of a tension between on the one hand trying to find a theme or themes that can interest and involve all subcommittee members.
On the other hand, it is possible that one way of doing that is not to find a single theme or themes that would involve everybody, but to essentially have smaller workgroups that one, two, three people could get more intensively involved in. I know in talking to Lisa about this before she left, she was somewhat frustrated by her role and the difficulties of trying to get -- et cetera, et cetera, et cetera.
I say this as somebody who is not a member of the subcommittee because I am atomized on my own activity -- on my own -- activities. I do think that something that would be comfortable if we could have from Paul and from Barbara and Kathy a few minute of discussion on -- and help inform
-- the new members help inform how we go forward.
[Multiple discussions.]
-- last summer, there was an executive committee plus retreat and one of the things that was discussed is whether there should be a Subcommittee on Population. There may be that there should just be a series of workgroups that report to the Executive Committee. I don't think that that idea has particular currency, but that was something that was seriously discussed.
MS. COLTIN: Well, I think, the problem seems to show up every time we decide what the priorities are going to be for a given year and what we are going to work on because the subcommittee in its charge covers a very broad range of issues and topics around the population and within that there are many different issues that could be focused on in a period of time.
What would typically happen and it wasn't just last year, it happened the year before when a different topic was chosen is that the committee would zero in on a particular, very defined topic, whether it was data for the territories and insular areas or Medicaid managed care or in this case ICIDH as a potential function status measure, that those individuals whose interests went in a somewhat different direction would be less engaged and, therefore, often not available for either meetings sometimes other than breakout sessions when there were all day meetings at separate times, would not be able to attend, or participating in conference calls or rapidly review materials and turn them around for comment or whatever.
It would always be a few individuals for whom that topic resonated and they got engaged and they really did it. So, that has been an ongoing issue and I am not sure how to address it other than to perhaps suggest that as the committee is considering what it is going to focus on, that it either picked very high level broad kinds of issues in which everyone has a stake somewhere, and that is not necessarily an easy thing to do, or perhaps you do think about a model as was raised in the retreat, which says, okay, we will identify small groups of people who have interests in particular topic areas. They will become a workgroup that is kind of an ad hoc workgroup. They will explore that and report back to the full committee and engage them upon those issues.
So that the nature of these workgroups, some of them might be six months. Some of them might be a year. Some of them might run two years, but they would not draw people away from their own topics. I know that it was always an issue with the quality workgroup in that the membership overlapped almost completely with people on the subcommittee and how many things can you do.
On the other hand, if that had been identified as a topic area where just those who were interested were going to work on that and there was, you know, another topic area where you had to decide did you want to -- which one did you want to do and those became smaller groups that could get some work done and then engage the full committee as they had something more tangible to present or seek input on or whatever. That might be a more viable way to go because you wouldn't worry about having full attendance at meetings or whatever.
So, the action and testimony might really occur more in the context of the full committee meeting and the way it did with the quality workgroup and that was clearly the only way we had to go because we couldn't have additional meetings. It was too much of a drain on the people's time.
That is the only input I have. Barbara, you have been -- maybe you have a different perspective.
DR. STARFIELD: I am not sure. I am going to think out loud. Well, previous thinking has been premeditated and -- I think this committee really has got so much to do and it has got to somehow define its unique mission. I think the thing that is unique about this committee is that they must think about population. It shouldn't be thinking about individual data except it is aggregatable populations.
I mean, I think it is the whole population and I think we ought to use some kind of model of the terrains of health to inform what it is we will get and then -- I have just been working on this model of health and I will probably be ready to share it relatively soon and we ought to think about what sorts of things we want to -- from the point of view of what we know about the population.
Now, there are two things about populations as Ed pointed out this morning, the average level, the low birth weight, death rate and there is distribution. We haven't much thought about distributions in the population, except as it is reflected in our own particular interests, subpopulation group, if we are particularly interested in children or disabled. We should be thinking about a whole population.
I actually think we ought to be doing things like considering the ICIDH or how you can get a summary measure of health of the population, how it would be amenable to looking at distribution of the population and then passing on to the Standards and Security Committee, you know, how, in fact, you get the data. I don't think we should be -- how you get the data. We should be thinking about how you get information on population health and distribution of population health.
I will give an example of things that I think that we probably shouldn't do or at least shouldn't do in the way we did them. I don't think that the Medicaid managed care is a population -- it was a subpopulation. We could have made it a population by looking at the whole population, one part of which was Medicaid. You know, how does the Medicaid population relate to the rest of the population. Then we would have had a much more comprehensive picture of what that report meant in the context of things.
As it was, we had to impute, you know, why is the Medicaid population different from the rest of the population. We couldn't deal with it at all. The same thing with the -- well, I am not sure it was true for the insular islands because there we were dealing with availability of data not with what the data showed. So, that probably wasn't so bad.
But I think that we need to be really careful about how we define what we do because we have got limited resources and we always should use the criterion as are we learning something about health of the population, of distribution and the health of the human population.
DR. NEWACHECK: I would like to see us having some kind of model -- there are about 15 topics for this committee to work on. In the topic selection area, what struck me, it is very idiosyncratic and it very much depends on the members. We all have very different interests and what we have done, I think, is pretty much -- if someone has been very enthusiastic about a topic area, we have kind of gone with it. It is not because we all thought that was the most important issue, but someone was really pushing that.
It has not been a process where I could see a high level consensus that this is the right thing to be doing rather than to have ideas and have the energy to push it and make it happen. I don't think that is really the right way to do things. It doesn't necessary serve the public and it is maybe not the most important thing -- so, somehow having some criteria that we would use, maybe start -- the other thing that I am concerned about is the audience for our reports or the lack of audiences.
I think that is the problem. We don't really have a client. It is not a specific client. It is not somebody who has asked us to do this activity. So, we write a paper hoping that somebody will like it but without any kind of real connection to that audience and we have to make sure that it is actually written in a way that will be useful to that audience. It seems to me very frustrating to spend -- it takes so long to do because of all the committee work that we have to go through.
If it is just going to gather dust --
MR. SCANLON: Given the audience, they differ depending on the topic or issue.
DR. NEWACHECK: I guess what I would suggest is we need more structure or a more vigorous way of picking out our topics, rather that randomly.
MS. KANAAN: Just as people were talking -- and I will talk out loud, think out loud, too -- that is what extroverts do. Introverts think it all through and we extroverts talk out loud. We think while we are talking.
I agree with what everybody said and I have been maybe observing this committee longer than anyone else in the room, I guess. I guess "observing" it is really the word.
PARTICIPANT: Who was the president?
MS. GREENBERG: Harding?
I got to thinking about the audience issue. There was a brief period in time where there was a Subcommittee on Mental Health Statistics. The chair of that subcommittee had to fight to get that subcommittee. The Executive Subcommittee tried to offer him everything else. That is what he wanted. David Mechanics. And he got it and he had a real audience. The National Institute of -- well, it was really -- whatever it was then. All I can think of is SAMHSA -- it was ADAMHA then.
They had things they wanted and that worked. We were in sort of a different time then. That was pre-HIPAA, et cetera. There also had been some things that the NCHS had specifically asked the committee to do and that has generally worked because the committee had done it or a subcommittee, like the mental health subcommittee did something and other subcommittees have done that.
I don't know if everyone knows that the NCHS Board of Scientific Counselors has been approved, but that will be established. There is the possibility they will bring things to the full committee, but specific NCHS things are probably less likely to come to this committee.
I mean it is part of a piece because this committee wasn't really able to do it, but all of this is -- I would be kind of uncomfortable for their not to be a Subcommittee on Population because we have been trying to bring population issues to the full committee. We, obviously, have several today and we have -- but if there were -- and then things have come up and then if you were not able -- if the chair or whatever was not able to say we would like to refer that to the Subcommittee on Population, there would be no subcommittee to pick that up.
Now, the Subcommittee on Population could be a group who would react in that way when things could be referred to them. It could really not be a group that holds hearings. The actual more in depth look at issues could be by these smaller workgroups, as you are suggesting, or the organizing of panels maybe for the full committee, like the quality has done, could be by these smaller groups, but the Subcommittee on Populations could be more of an umbrella group to -- at least during full committee meetings and possibly some conference calls, consider there is a critical mass of people to work on an area or whether we want to make recommendations or comment on something that really doesn't require hearings, doesn't require, you know, developing a whole long report or anything like that, but at least it would exist for that purpose and then more in-depth activities might be done by these smaller groups.
Alternatively, you might, using the model that Barbara suggested, come up with some things that you did want to -- the whole group would want to work on. But I would be reluctant to lose actually having that Subcommittee on Populations. We have a Subcommittee on the Standards and Security. You have got one on privacy and confidentiality. I think it would be a bad message actually to not have the Subcommittee on Populations, but it may have to operate differently and may not be able to do year long studies, et cetera, because of the problems that have been described.
So, I mean, I would encourage some kind of flexible arrangement --
MS. KENNEDY: Are you suggesting something like a standing ad hoc subcommittee?
MS. GREENBERG: Well, it wouldn't be ad hoc. It would be a standing committee but that it would -- you know, it is like when they say, well, let's ask the Subcommittee on Populations what should be done. Well, the Subcommittee on Populations then decides three of us or two of us really feel -- we feel we need to do something on this. If we should write a letter as a whole subcommittee, fine. If we want to do something as a smaller group, you know, that kind of -- play that kind of role.
MR. SCANLON: Yes. It wouldn't have to be with -- I guess I would -- in any way the Population Subcommittee's job is the hardest of all. In many ways the HIPAA stuff is easy because it is site-directed for industry standards and there is an audience. So, in many ways it is easier, at least in terms of agenda development than the Population Subcommittee, which I think is -- it is very difficult, almost by the nature of its scope, it is quite difficult.
I would point out also that we are kind of in a transition phase, where I, too, would not want to see the capability of the standing Subcommittee on Populations disappear because we don't -- it may take a couple of months. It may take more than that, but until the new concerns and issues relating to populations -- and some of them are standing, we clearly wouldn't want to -- the capability.
Then if they look on the horizon with the vision for health statistics, there are -- as that becomes more specific and moves along, I think there will be issues there, too, about the -- in fact, that is a population and probably even from the NHII there may be -- population oriented than the programmatic oriented or something like that.
I do note that we have a problem even with the other committee members. I remember at one meeting, most folks didn't even understand what we meant by population based. In other words, if you have everybody in the clinic, isn't that population based? So, clearly we think -- this is sort of shorthand, I think, in the public health and research community for this whole concept that Barbara was describing. I don't think it comes out easily to the other folks who are solely in administrative or business settings.
So, part of this meeting may be educational as well, but I guess all of this just adds to the argument that we -- I, for one, would not want to see the capability of a population subcommittee disappear. I think we have to acknowledge that we are in a transition period. Some new issues may emerge that will be referred immediately to the subcommittee. Other issues will emerge where the committee will want to deal with something.
Some of them will be commenting upon potential policies and standards or implementation. Others will be looking further down the line. I still think that it wouldn't be a bad idea to have the heads of the statistics agency, like Ed Sondik and maybe the statistics program at SAMHSA and statistical activities at AHRQ even. Have them come in and meet at the subcommittee every now and then. Tell them what they are planning and if there are issues -- I would start a basic routine and it is a way of finding out, you know, what is being thought about.
Long term care data, for example, we are probably putting together, starting the first steps, and, again, I think this is the population-based view, Barbara. It is not a single setting or it is more of a framework for planning the next generation of long term care data resources. I think we would want to have the subcommittee react to that as well.
All of this, just to sort of lend support for the idea that I would hate to see a standing subcommittee's capability fall by the wayside, particularly in a transition period like this. The other half of the committee, I think, is still not -- I can see them struggling with the notion that it is population based.
DR. MAYS: I guess I don't bring the history --
PARTICIPANT: You just go back to Clinton.
DR. MAYS: I did read the reports, though. I have a different idea about -- part of it is the notion of it does need, I guess, greater specificity in terms of defining itself. So, what that means is that you can either at the tail end of something -- to some extent I would assume that people -- reflect on the issue of an audience.
I think in terms of where we are going now with some of the initiatives that exist -- Healthy People 2010 -- racial ethnic disparities, I think if you circulate out in the field when people talk about those things, they are talking about them in the sense of kind of from a population perspective.
So, I think that things are going to be generated -- if our role is to give advice to the Secretary, those are things that are very active at that level, like some hope that, No. 1, we would be kind of ahead of the curve in terms of trying to think about particular issues that might be relevant to initiatives that already exist.
I also think that we are going to see things where NCHS has to respond and they will come and maybe ask opinion and help, et cetera. And it may be the need of who also should be in the room from some of these other agencies because I think it is a big issue. I think that not only are there issues in terms of the racial ethnic community but the issue of as I looked at who your -- populations are, the disability community is getting more active in terms of -- you know, everybody wants their data now and everybody wants a perspective.
So, I think that is -- I was talking to -- I guess there is more activity in terms of the lesbian, gay, sexual orientation groups and what that means in terms of the data sets. So, I think that there is quite a bit of work to some extent that this group can be a vehicle to comment on, but the organizational is really the issue of kind of where is it in, you know, kind of in the scope of things.
I mean, I think this question of people like not being here, I do know that some instances people have lots of interests, but I think all of us are kind of told that, you know, you have to do one thing here. You can't just -- the thing that you are most interested in, that is all that you do and maybe that message also needs to be passed on in terms of populations because I don't think this is like a topic that is kind of open corner, but it is like we all need to pay attention to several different issues.
So, I guess it concerns me that people kind of fall by the wayside and it is hard to get a group up. I have a feeling that some of this is structural in terms of this issue feeds into other issues and the relationship between this group to some of the other work groups and that before it is the content that we are saying is the problem, it may be the need to look and see how all these groups are structured because I guess I was sitting in another group -- I don't remember which one, it was my first time -- and they were complaining that, you know -- I guess it was Privacy, that they thought, you know, people didn't pay attention to their issues and they kind of got into something last and, you know, and there was a small number of people there. So, I am not sure --
DR. NEWACHECK: I was just thinking about ways of how we could operate. Maybe one way to do this is to think about -- some of the things that we can do quickly and well would be like the letters we have written on various points to the Secretary and they are very topical issues, important issues. We typically have gotten responses back on them, too, which means somebody is paying attention, at least the secretary, with a small "s."
[Laughter.]
Which indicates I think we can do well. We can do rapidly and it makes a lot of sense we all feel good about it because there is not a big investment -- and maybe reserve our efforts for big reports like we are doing now on functional status or Medicaid managed care, the things where somebody has really requested -- like an agency or assistant secretary or something like that, so that we don't really spend all this time that takes away from other activities, doing things that may not even really --
MS. GREENBERG: That is exactly what I was thinking. I was thinking, you know, in retrospect -- and it is too late now, but, obviously, HCFA, bless them and some of my best friends work at HCFA --
[Multiple discussions.]
-- was not interested in the Medicaid managed care effort. They -- I believe their reaction to the report was that it didn't involve them.
MR. SCANLON: It was a response I was ashamed to share with anyone because they just didn't see -- it was like something, oh, yes, there were some good ideas here. Maybe the states will --
MS. GREENBERG: In retrospect, it just made -- that may have been an issue that would have benefited from maybe a day of hearings and a letter because to put that kind of effort into a report -- now, I am reluctant to say this because I really feel that the committee should be ahead of its time. I think that is in the history also, that if you only do what the Department wants you to do or asks you to do or people are looking for you to do, you know, then the staff could do it almost. I mean, that is why we are bringing in people from the outside.
So, I am really not saying that, but what I am talking about actually how you put your effort in so that maybe -- yes, any issue should be on your plate, but if there really isn't an audience for it, as Paul said -- because I think you also lost interest of members when they don't think there is an audience and where is this all going. Then do something that may be shorter from the point of view of information gathering in a letter or, you know, a long letter, a short report with a letter or something and really only do these more extensive efforts when up front there does seem to be an audience for it.
Now, they may not like what you recommend. That is still a possibility, but at least they are interested in receiving it. I mean, I think on the functional status and the ICIDH, there were enough of us working on ICIDH in the Department, in NIMH and at NCHS, et cetera, that you did have a potential audience for your recommendations, not to mention that there is a whole activity with the administrative transactions and looking at what they should include.
But I do think that that should probably should be built into it more and so that more time should be spent with determining who the audience is. If there isn't really an audience, do -- if you still feel committed to it, do something short.
MR. SCANLON: And do something that is less -- I mean, that we have resources available for the Population Subcommittee -- and it may be that you would defer fact finding in terms of a literature review or something like that, rather than devote a whole year to something when it is unclear. Sometimes it is a flash. There was a time for Medicaid managed care when there were big data issues. It passed and things kind of settled in and after that, I think people viewed it as, you know, going back and partly regulatory, they didn't want to deal with it.
So, I think the subcommittee may want to have different -- you know, there is a rule that you develop whatever -- you develop proportionate resources to the value of the audience and the outcome and for other things you sort of triage. If it is a literature review, if it is a one-day hearing, if it is having somebody do some fact finding, ranging all the way up from a full year, you know, contract or supported study, things like that, or hearings. So, depending on what the issue is --
MR. HITCHCOCK: Well, something I am not sure the committee has done formally is to do a small project, very small project, and perhaps be proactive in providing a larger effort. I don't know that that has really been done formally.
[Multiple discussions.]
MR. SCANLON: And, again, some of these things -- I mean, it is -- on the, just to go back on the islands report, that actually had -- I mean, I -- admittedly it was not -- it wasn't the highest priority in the population area for HHS or even for the subcommittee, but there was a lot of interest and it clearly was something where there was a need and I think everybody pitched in.
It actually had a lot of success in building visibility for the effort and actually a lot of good things came out of it. But I don't -- Medicaid managed care didn't have that. I think part of it was timing. The time passed and it was a different kind of an issue to some extent, too. Even when they are very good ideas, if they involve regulation or forcing states and other people to do things, there are other factors in mind in terms of how far you could go.
But there are other issues that I think will continue, as Vickie was saying. I think population and subpopulation issues, whatever the initiative is called, they are clearly issues in the United States and we need the capability to be able to deal with them.
MR. HANDLER: The last time the National Center for Health Statistics had its public health conference on records and statistics, there were presentations on joint activities with European countries, with Canada. I was thinking to myself, this was before the last election, thinking to myself, if Governor Bush gets in and becomes the President, he is not that concerned with Canada. He is more concerned with his neighbor, Mexico.
What did he just do? He just visited Mexico and spoke one on one with the new president down there. The Hispanic population is -- one of these years, I am not sure which, is going to be larger than the black population in the United States. That is a sleeping giant and that really is something that the Population Subcommittee in my mind should start getting into. Even NCHS should do more with the Hispanic and Mexican population.
Maybe the President will be telling us to do it.
MS. GREENBERG: We know who the new minister of health is, Julio Frank, who was the mastermind behind the World Health Report 2000.
DR. MAYS: -- but to have all of the groups look at the issue and see whether or not -- in that way, there is kind of like coordination at the very beginning. I don't know if it is like the -- or the staff or someone. So that, for example, if we come up with an issue to make sure -- even though we know that everybody interested in our issue, let's just say, but let's also make sure that we identify if the other subcommittees have a piece of it so that kind of up in the front we can know the back and forth process so we can also at that point see how much effort and then I think what happens is that it is coordinated if, I don't know, Medicaid comes up and, you know, maybe that question is asked in the -- if there is anything in particular, look at this, tell us if there is any particular.
Then you have a sense of how big is the issue. You have a sense of who all needs to work on the issue and then it may be that you don't even have the whole subcommittee work on it then because you realize that it is better if you take two from this group and two from another group and then they decide how to produce this.
But it may be that there is kind of -- as we enter into it issue some determination, how big is it, how much interest is there, I mean, because we might see something as, you know, like very important and the other groups are like, hmmm, maybe they will give a pause to think, well, okay, it is now smaller because they are sort of like, you know, a barometer of how the rest of the world is going to feel about this.
So, I think it could help if we try and organize some of this just internally to us.
MS. GREENBERG: Lisa really tried to get the other subcommittees engaged.
DR. FRIEDMAN: Oh, I know. I do think that going forward with whoever is on the subcommittee and whoever the subcommittee chair is, I think it is going to be really important both be very careful, as Paul and Barbara were saying, about choosing topics, but also be very thoughtful about what we would want to deal with as a full subcommittee and what we would want to deal with as a workgroup within the subcommittee because I think one way of avoiding some of the problems and some of the quorum problems is going to be to perhaps take on less formally as a full subcommittee and perhaps more as workgroups, which could, in fact, be almost a full subcommittee.
Before we move on, there have been a variety of topics on -- I certainly don't think that we should choose today, but I think it would be helpful just to spend five or ten minutes discussing possible topics or possible forthcoming topics.
A variety of things have been mentioned over the past several months. This is in neither ascending or descending order. This is just an incomplete laundry list, including some of the health measures and their implications for subpopulations and state and local areas; geocoding as a means of obtaining data on economic position, fair information practices for health statistics, obtaining better data on disparities and defining disparities, including economic position on GBLT, urban, rural --
DR. STARFIELD: What was that, GBLT?
DR. FRIEDMAN: Gay, bisexual, lesbian and transgender. And race ethnicity, determinants of health and establishing a -- determinants of health and then finally the ever-popular OMB 15 implementation.
PARTICIPANT: Which isn't OMB 15 anymore.
[Multiple discussions.]
DR. FRIEDMAN: The 1997 revised federal standards for race and ethnicity, formerly known as OMB 15.
DR. STARFIELD: Well, did we finish the --
[Multiple discussions.]
-- health rather than a thousand different aspects of health.
MR. HANDLER: One thing I would like to see from my point is what each state is doing to implement those race guidelines, 1997 standards. Each state is doing something a little different. Some are kicking and screaming, don't want to do it all. There is a whole range on what their time schedule is and what their plans are for -- data --.
PARTICIPANT: The guidance?
MR. HANDLER: For what each state is doing. It is up to each state to decide what it wants to do.
MS. QUEEN: But with the birth and death records, NCHS can tell you what is happening with that. I know that they have the maximum deadline and --
MR. HANDLER: It is all voluntary.
MS. QUEEN: I mean, NCHS has a special specific -- so, you can find out that.
MS. GREENBERG: Could it make a new standard certificate?
MS. QUEEN: Yes.
DR. FRIEDMAN: I don't think it would be appropriate for us -- you know, given the number of people who aren't here and the number of people who are going to be going off to make decisions on topics today, but I do think that we should -- if anybody has anything else to add to the laundry list during the transition period, I think that would be helpful.
MS. GREENBERG: And it could -- I mean if were was some groundswell or whatever, it could guide some of our thinking about some of our thinking about new members. We have got at least two people who have gone off, who were populations people; Andy Kramer and Lisa Iezzoni, not to mention the --
DR. STARFIELD: Elizabeth -- oh, she has been replaced already.
MR. HITCHCOCK: There is some work going on that Rose Li could have told us about if she was here today, with language use and health research. We might want to at least here from what those folks are finding out. It is quite interesting what percent -- how many different languages would a question there have to be translated in before you could get 95 percent of the population, those sorts of issues. We might just want to hear from the -- NIH largely sponsored some projects and NICHD, they have a workshop or two.
MR. SCANLON: The other thing is something I will just have to wait and see, but on the whole sort of public health side of life, there may be issues that are emerging and relating to around these activities, vital statistics, that are in more than one state or in one agency that may be -- I don't know. We would have to look, but, again, we are in a transition now. I think we just have to leave flexibility for some of these things.
DR. STARFIELD: Well, at least one other issue that is hot now is the adverse effects in medical -- that is being looked at by the Quality Committee, but it is being looked at in a very clinical sense, rather than in a population sense. I am not aware that anybody is looking at it --
MR. SCANLON: I mean this whole -- quality we have been talking about for a long time, but there are specific areas with data quality, patient safety data. We can see what ultimately happens there, but there are -- within the quality rubric, there are specific things that Barbara is indicating that probably could profit from a collective view.
DR. LENGERICH: Jim, were you thinking about the different surveillance systems?
MR. SCANLON: Yes, among other things. We are sort of in between a new generation of surveillance systems, a least a framework for that, and -- not getting any better sort of systems.
DR. LENGERICH: -- the infrastructure?
MR. SCANLON: That, too, but there are -- you know, do you sort of wait for the new standard approach in electronic web-based approach or are there other things to do in the meantime. What about analytic data, are there ways to pulling them together better analytically and then showing what is happening and then getting the information
-- I mean, I don't know, but I think the whole area of -- our portfolio of public health surveillance and related supporting activities, biostatistics registries and so on, I would just think would benefit from some sort of look in terms of where do we stand now. Before we reach the new generation, the standards that exist and what are the things that could be done, are we ever going to get there?
DR. STARFIELD: Well, I think that the presentation tomorrow by Denise Koo may help us a lot. Now, that is really related to NHII process, but it is --
[Multiple discussions.]
DR. FRIEDMAN: Right now, electronic diseases in CDC terms means infectious diseases, but I do think that one of the things that the full committee is moving the Standards Committee away from solely HIPAA to --
[Multiple discussions.]
MR. SCANLON: And vice-versa, though, I would like to get the public health committee to be a little more oriented towards -- I mean, I am becoming aware of sort of a minimum data set for emergency room data that apparently CDC has at least been shopping around and I am just a little concerned. I know the HIPAA community was quite concerned that it looked like it wasn't even -- they didn't look to HIPAA as a first possibility to build on. It was sort of constructed from the entirely new -- I mean, part of the committee's role, I think, is to kind of bring these perspectives together.
MS. GREENBERG: Although the deeds was a sort of the emergency department claims attachment. So, I mean, in that sense it has definitely been linked in with HIPAA, but the overall deeds data set is much more extensive than they wanted and that certainly is in the basic encounter. I think there really was linkage there because deeds was completely done with HL7 standards.
MR. SCANLON: Well, that is a good part of it, I think, but I think some of the folks in the HIPAA community are quite upset at the detail within deeds and just don't feel they were consulted adequately and, you know, it may be wrong, but I think the idea of using the administrative data effort to support public health and research and assuring that those communities are aware of what is going on there and look there as well might be another way -- but, again, it is -- someone needs to -- we need a big picture look, a population data perspective. What does the portfolio of public health data systems look like and where are we heading and what is the framework for getting there?
Part of it is the vision -- part of the vision for health statistics that the group is working on, but I don't think it goes into that much detail.
DR. STARFIELD: You know, when the Standards and Security Subcommittee was formed, I was chair of it and my whole thinking about it was a population thinking and it got so discouraging but maybe four years later or five years, whatever it is, it is going much better.
MS. GREENBERG: I mean, as people are looking to implement HIPAA, there is even less receptivity to having anything in the basic administrative and financial standards that is relevant to public health or population health.
You know, they are throwing out the minimum necessary rule now. It says you shouldn't have anything that isn't absolutely required to pay the bill. This is what the Public Health Data Standards Consortium has been working on. It is not only an uphill battle. It is getting worse in the short term, I have to admit.
MR. SCANLON: Well, I think as people actually have to comply with HIPAA, that is expected and then you almost have to look at -- people are doing it, then you look at how do you make it better and it may be that the public health --
MS. GREENBERG: You have to be in for the long term. That is for sure.
MR. SCANLON: And we have to say we in public health -- I count myself as a card carrying APHA member and a longstanding PHS employee, we are looked upon by the health insurance folks and the providers as sort of being unrealistic, you know, like bringing a research attitude to a business setting, like you can ask whatever you want and burden is not an issue, practicality is not an issue. It is not true, but it is partly true.
I hope that we learn to work more -- you know, build on the strengths of that whole data source. I mean, at one point, Medicare data was largely just administrative data and it took about ten years to get to the point where, you know, it is actually something you could use now. It may be that way for HIPAA administrative data.
Anyway, that is another perspective and I don't know what specifically we could do.
DR. MAYS: Can I just raise something because I am a little concerned about the fact that we are going to -- we have lost some people but we are going to lose some people and that we are looking for new people and that we have kind of talked somewhat about stuff, but I don't know maybe -- and, again, I am new enough that I know a little and not enough. So, I guess my discomfort is it is too vague for me right now and it would be -- isn't at all useful to say, in particular, to get a small group together or something to do several things.
One, I think, to even rethink the charge so that population is defined and more specific and that we try and have population be a view that is thought about relative to not just the subcommittee but the work of the group in general. Is it possible to, you know, kind of think about
-- you know, other than the laundry list, to try in the laundry list and really put a little meat on it.
I think it will be easier in terms of like thinking about new people. It will be easier also to know what we are losing in terms of those who are stepping off, in terms of somebody so that work doesn't just kind of fall. I mean, I am concerned about what, for example, you are talking about, the determinants and you think you are ready. Well, I want to be ready sharing it with -- so, it is like maybe if what we do is give you structure to be able to plop it into something that is going to live, it might really be helpful.
So, I guess I am asking is it at all useful to be a little more structured about making this group's destiny clearer, but not trying to carve it out totally because there are going to be some changes.
DR. FRIEDMAN: Vickie, I think that makes a lot of sense and essentially, I think that is up to the four or five people who are here or who are on the subcommittee with particular emphasis on people who have -- after June, you know, Paul and you and hopefully Gene and then --
DR. STARFIELD: Well, depending on how long it takes to replace people.
MS. GREENBERG: Kathy and Barbara go off in 2001. I doubt they will be replaced by June. They are irreplaceable, but I doubt that they --
DR. NEWACHECK: So, it really does seem to make sense not to engage in these huge projects now.
MS. GREENBERG: But some of these definitional -- I was really struck when I read over the draft minutes from the Executive Subcommittee meeting on November 27th. There was a lot of discussion about trying to define this whole issue of disparities and what -- in relationship to the population view and all of that.
Work could be done on that without having, you know, even a lot of meetings. It could be done through exchange of documents, through conference calls, through coming or bringing -- if we could bring a few people in, you know, to -- you don't need a forum for that or a few people could meet in California. I mean, a few of you are in California. We could send a staff person out there.
But I mean there are a lot of different ways we could do this without making a big production, but we could maybe situate this subcommittee and even the full committee for what will come next. But I think the -- although I remember the difficulties in getting the current charge approved, part of it was because we were merging like three subcommittees and it was -- we had the Subcommittee on Mental Health Statistics, Long Term Care and Disability and then also Minority Health Statistics.
We are beyond that now so that, you know, I think the charge would probably benefit from looking at it in the context of some of this discussion, trying to define some of these things, maybe networking with the workgroup. I am sure the Workgroup on the 21st Century would have some suggestions maybe.
I think that would be very useful.
DR. NEWACHECK: I think some things that could just be viewed as informational activity -- we could have a day of hearings on the disparity issues and bring in different perspectives from speakers to talk about -- without necessarily having a commitment to writing --
[Multiple discussions.]
-- and learn more as a subcommittee and to decide whether we want to go forward.
MR. HANDLER: I think one of the staff people here, Olivia Carter-Pokras, works for the Office of Minority Health and they have been doing a lot of work --
[Multiple discussions.]
I don't know who you would call to give a briefing, but if I had to ask one person, I would start with that office.
DR. STARFIELD: There is just sort of one thing I want to throw out in terms of -- I don't know if it is helpful to try -- what is the population viewpoint. You know, I think if you think of it in the context of relative risk and population attributable risk, you are helped by that. You know, the whole field of social class and health is a relative risk phenomenon. To what extent is this social class at relatively more risk than another at relative risk.
But a population attributable risk is how much of the difference in health across populations can be attributed to differences in population subgroups and how much is due to the same thing in -- you know, that is a population view.
So, I think maybe that could sort of be helpful in thinking about what we ought to take on as a population thing. You know, how much of it is the population thing and how much of it is a distribution.
MR. HANDLER: There is always a background need to merge minority group status and economic status and education status and then tease out which is more important, which combination of those three variables are more important. That is sort of like a background issue, I guess.
MR. SCANLON: But there is a literature. That is something that could, you know, in terms of a paper or -- I am remembering, Dan, that John actually -- Lumpkin -- was actually -- he just mentioned this, I don't know if he wanted to pursue it -- that he thought that we might want to look -- the committee might want to look at school-based service.
DR. FRIEDMAN: I suggest we do have some other things that we need to discuss in the next 55 minutes. What I suggest we do is tomorrow summarize this discussion for the full committee and then whoever is on the subcommittee schedule a follow-up conference call basically to center in on what Vickie suggested in terms of taking a good, hard look at the charge, trying to be more specific about what we mean by population and populations and go from there.
The two remaining items of the ICIDH report and then we are going to spend some time on OMB 15.
Paul.
DR. NEWACHECK: I am not sure where I am.
[Multiple discussions.]
In any case, it seems like we do have a number of things we need to do if we are going to get a report out in time for the full committee to review it at its June 27th meeting and we need to get -- this is our last opportunity to get Susan face to face in terms of structuring the report.
We also need to schedule some conference calls as we have three draft reports scheduled to come out, one on March 16th, another one -- a second draft on April 20th and a third on the 11th and presumably a final draft and then a final version for the committee to look at, say, the first week of June so that they can then have a couple of weeks to look at it before the committee meeting.
[Multiple discussions.]
But I think what we probably want to do is schedule at least one conference call to discuss at least the first draft version and then maybe we can do the other ones by e-mail if we feel we would be comfortable at that point.
Tracy, are you the one who would do that? Maybe we could schedule a conference call at some point say around the last week of March to discuss the first draft of the report and then we can just decide after that whether we need to schedule another follow-up just to e-mail at that point.
DR. STARFIELD: Can I mention something that doesn't seem to be in here and that is potential uses of ICIDH versus summary measure. I don't think it is in here. Maybe I missed it. There is a potential for ICIDH as a summary measure rather than individual codes.
[Multiple discussions.]
We keep hearing that that is coming or might be coming --
DR. KENNEDY: That is an application of it as opposed to part of ICIDH. I mean, just the way that you were describing the work you had done at Hopkins, it is not DSM or ICD or you don't call them DSM or ICD if it is a summary diagnostic. It is an application.
DR. STARFIELD: For example, we can take the ICD, the 20,000 codes in ICD and come up with a number for each individual.
PARTICIPANT: You can?
DR. STARFIELD: Yes, we can, with the system we have got.
MS. GREENBERG: Right, but that isn't -- that number isn't collected --
DR. STARFIELD: That is a summary measure of diagnostic information.
MS. GREENBERG: But that isn't the number that is collected in administrative records.
DR. STARFIELD: No, but it comes from -- it is a different application. The question is --
MS. GREENBERG: -- was in this report or whether it is a follow-on issue.
DR. KENNEDY: Right. I am agreeing with Marjorie. You wouldn't put it in part of an ICD report necessarily.
DR. NEWACHECK: We have a list of potential groups that might be interested -- it is in the outline -- of researchers and others and this would be just another potential application --
DR. STARFIELD: Well, I mean, the question isn't, you know, for the core data elements should we allow several data fields or reiterate data field for ICIDH codes or should we, in fact, pull out one field for a summary code? I don't know the answer to that.
PARTICIPANT: Is there a summary code in the core date --
DR. STARFIELD: Well, Ed mentioned it this morning. He said that LWHO is --
PARTICIPANT: It is not a summary code in the same way.
MS. GREENBERG: That is a summary measure of population health.
DR. STARFIELD: Of population health, not of an individual -- so, there is no summary measure for an individual?
PARTICIPANT: No.
MS. GREENBERG: Looking at all the different functions and coming up with a summary measure. That may well be something that needs to be worked on.
DR. STARFIELD: I mean, you stop to think of the challenges of putting ICIDH on administrative data, you know, it is going to be more codes than ICD codes.
MS. GREENBERG: It could be unless -- I mean, it depends on how --
DR. KENNEDY: Just the way you can have a field for primary and secondary, et cetera, you could do that.
DR. STARFIELD: 15 or 20, you could easily --
DR. KENNEDY: You could easily have them but I don't think you would necessarily say in an encounter form be addressing all of them, just as you don't necessarily in an encounter form address all the different diagnoses. You may address a subset, in which case you capture them and then somebody else's encounter may capture a different form I mean, you have got a one person for your fractured ankle and your shrink for your schizophrenia and they are both valid ICD codes, but, you know, you don't go to your shrink, hopefully, for your fractured ankle or vice versa.
[Multiple discussions.]
That is how I can see where the different codes are appropriate in different places and the claims, you know, you are claiming for one versus the other.
DR. STARFIELD: That is if it is on the encounter.
DR. NEWACHECK: Could we go back just to cover some general issues first to make sure that we are all in agreement before Susan starts writing up the report?
First off, did everybody have a chance to think about the recommendations that were circulated? Does everybody feel comfortable with them? I personally have -- feel in reading it, there is some dissonance or inconsistencies in some off the recommendations.
For example, in Recommendation 5 we talk about how ICIDH has promise as a code set for reporting functional status and then in Recommendation 6, it implies that it should be designated as a standard code for computerized medical records and considered as the standard code for administrative records.
It seems like we are saying two different things there. We are saying we are not sure about it in 5, but we like it, the general idea. Then in 6, we are saying, yes, we really ought to be using it.
I think we need to clean this up a little bit because otherwise we are sort of giving mixed messages to people. Do people have strong views about this? I thought as a committee, subcommittee in all of our discussions, we have all felt comfortable with the notion of recommending ICIDH as a concept and further exploration as a measure that could actually be used in records, but we weren't ready at this point to say it specifically ought to be the item that goes into administrative records because we weren't sure how it would work in practice. It hasn't been fully tested and all that.
So, to me, Recommendation 6 seems a little bit strong, based on what we had talked about up until that call.
DR. STARFIELD: Couldn't we in 6 say when ICIDH is represented as a concept then or --
MS. GREENBERG: It is the only code set or as this says, it is the only classification system on functional status. So, I guess -- now, admittedly, it hasn't yet been approved by the World Health Assembly, but it looks now without a doubt that it will be in May.
So, the question is whether you would want to have a code set, which actually they have told me now, the PMRI group for the Standards and Security Subcommittee, that they are putting code sets on the back burner. You know, they said within -- after their report, then in 18 months they would make some recommendations for standards, specific standards and they would ask the Department to adopt them.
They are undertaking that now, but code sets is not part of what they are looking at because they feel that code sets are -- they are not ready fully to address vocabulary and code set issues --
DR. STARFIELD: Is this Data Council or our subcommittee?
MS. GREENBERG: The Subcommittee on Standards and Security.
DR. STARFIELD: We could have influence on them if we wanted to.
PARTICIPANT: We could recommend that they look at this.
MS. GREENBERG: Well, I mean, they are not looking at code sets, but I mean I told them that this was one of the things that you were thinking about addressing and that would be their next phase. It wasn't this phase. They are going to hold hearings on electronic messages or whatever, but I guess what I was saying is whether you think there should be a classification system as one of the code sets in electronic medical records, classification systems for functional status or not because if there should be, I guess, ICIDH would do only one at this point.
That doesn't mean it is --
DR. NEWACHECK: In 5 we are saying that we think that --
MS. GREENBERG: No, no, I agree that those two are kind of contradictory.
DR. NEWACHECK: Well, we are saying that we think it is appropriate and has promise to be considered as a code set. In 7 we say but we need to do more research. It is just that in the middle we say let's do it before we go back to let's do research.
I kind of feel like this all fits together very well except for 6, which was a new one. If we took that out, it is a nice new set of recommendations that makes a lot of sense. It is basically saying it is the best thing out there right now. We think it holds a lot of promise, but we need to do more testing.
So, I would just vote to take 6 out and --
DR. STARFIELD: I agree with that but I think we should say something about that work be done to develop a code set from --
MS. RIMES: Because I think this is the only recommendation -- I may be wrong -- that actually brings in the terminology and the idea about a code set.
DR. NEWACHECK: It is in 5 that we use the terminology code set, but maybe we want to change the recommendation to something to the effect that we would ask the Subcommittee on Standards and Security to examine the potential of ICIDH as a formal code set for administrative records, rather than -- and we could put that after 7 or something like that.
MS. GREENBERG: Oh, you mean that it would be adopted for -- that is a different issue. They are going to be looking at various code sets for administrative records and alternative link -- all the code sets that didn't get named. Though I don't think that is quite ready, but there might be some group --
DR. NEWACHECK: Well, it is just something we have eliminated. This will only give them a heads up and then, you know, if it looks like ICIDH is going to get involved, then it would be a more active project. We would be giving them sort of a forewarning that we have this is important and worthy of their attention.
MS. RIMES: So, it is the subcommittee that you want to examine it? Is that what you are saying?
DR. NEWACHECK: Yes, I think we should say that we will refer to the Subcommittee on Standards and Security the issue of whether ICIDH, too, could be included as a formal concept, administrative records, transaction records or how it could be included --
MS. GREENBERG: Computerized patient records?
DR. NEWACHECK: I think so. The feasibility of including -- it is really a feasibility study is what we want them to do. We decided that the concepts make sense, but I am not sure about the feasibility --
[Multiple discussions.]
We are going to finish our report and we are asking them to keep it going.
MS. KANAAN: Could I raise a procedural issue that you are suggesting -- here, I am just adding something that Lisa said on the last conference call. That is customarily -- well, the usual procedure would be that the report that is issued in June comes from the full committee, not from the subcommittee. Therefore, it would not be appropriate in the recommendations for one subcommittee to recommend something to another subcommittee.
The question is is there time, in fact, if you were going to get the subcommittee buy-in, I will just remind you -- I don't know if you have copies of the original fall outline that I did, but the way that I handled that at the time was I included in the outline for the report a statement of sort of commitment by each of the subcommittees as to what they would do to advance this effort.
There is a statement of the things that the Standards and Security Subcommittee would do. Now, since that -- you know, and the idea was that between now -- between then and June, the subcommittee would somehow agree to do those things. Now, it is mid-February and the question is do you need to think about the June report as, in fact, just something coming from this subcommittee to the full committee or do you need to find a way to get buy-in from the other subcommittees before June?
DR. NEWACHECK: I am not sure we are asking to do anything before June. We are just -- we would think a recommendation -- that they would continue to carry this issue by -- I don't think that implies a commitment or agreement on their part, that they would be doing a major project or anything else.
MS. KANAAN: My point is that they would be -- that the report would be coming from them, too, you see? There can't be a recommendation to them and them.
MS. GREENBERG: If you agree today on what you want to ask the two subcommittees to do, then you could mention it tomorrow also as these are, you know, things that you would like the other subcommittees to do and to consider it or to look at these things -- I mean, I don't think they know probably. They are not going to say "yes," we will designate this.
DR. NEWACHECK: I don't see why we can't say something the subcommittee and blah, blah, blah, blah should consider --
MS. GREENBERG: So, you are saying it should actually be in the report.
DR. NEWACHECK: I think we need to give them the courtesy of telling them we are recommending --
DR. KENNEDY: That also would mean that they actually -- if they are considering it, then really no decision would be made before what, 18 months or something. So, one isn't asking them for fast turnaround or anything like that.
[Multiple discussions.]
PARTICIPANT: [Comment off microphone.]
MS. GREENBERG: Who is going to report back tomorrow from this session?
DR. NEWACHECK: I guess I am supposed to report on this --
MS. GREENBERG: Oh, you mean, just like tell them tonight that this is going to be recommended, at dinner? I can tell Simon, yes.
[Multiple discussions.]
But actually you are going to be there, too, right. I mean, maybe it would be better coming from a member, whatever.
The privacy group already did look at any unique privacy issues. They didn't identify any, but you might want them to revisit it. I don't know.
DR. NEWACHECK: So, that the decision to be made is --
DR. STARFIELD: We are going to make 7, 6 and revise 7.
DR. NEWACHECK: Does everybody else feel comfortable with the rest of the recommendations that we have about it?
MS. KANAAN: One of the things I noticed is that it is a little -- No. 9, if I am not mistaken -- No. 9 is really ICIDH. Should we take it out?
MS. GREENBERG: Yes. It is already -- it is part of what WHO is doing anyway.
DR. KENNEDY: Or that the U.S. continue to participate. Would that be useful or is that sort of --
MS. GREENBERG: HHS should continue to provide research to support work on the classification, in particular, demonstration and testing. Maybe you could say demonstration, testing and maintenance or updating or something like that. Just throw that in with No. 8. Is that what you --
DR. KENNEDY: That just sounds like internal -- like U.S. should do. It doesn't say that it should do it with WHO, but more that we should do our fair share but there is nowhere that says that we should sort of work along with the rest of the ICIDH-2 community to continue on the updating revisions in the future.
DR. STARFIELD: Work nationally and internationally.
DR. KENNEDY: Does that help, Marjorie, do you think?
MS. GREENBERG: Yes, sure.
DR. KENNEDY: Because one thing is the resources and support sounds like work we could just be doing here unconnected to -- you know, for our own administrative purposes unconnected to any international future work. They could be combined.
MS. KANAAN: There will be lots of opportunities to fine tune and get the language exactly right. So, I will consolidate those two.
I had another question that -- what is now Recommendation 6, before any recommendations about -- I think what we meant to say there was about widespread implementation of ICIDH-2 was its purpose. Is that -- the old 7. I think it needs -- for use in administrative records. Okay.
DR. STARFIELD: Including the computerized medical records, administrative data and the -- we just added that before actually.
MS. GREENBERG: Maybe before any recommendations about widespread implementation of ICIDH-2 in administrative records and electronic medical records are made.
DR. KENNEDY: The way the previous one, when they flow sequentially, says that social promises of code sets are reporting functional status information. So, that is what appears before it. Now, we are being more specific about functional status and other --
DR. NEWACHECK: [Comment off microphone.]
DR. KENNEDY: Do you want then -- what we are losing is any sense of the generic support for ICIDH-2 without these very specific applications.
MS. KANAAN: Yes, because the whole frame -- and I think that is one of the reasons that it is important to think of this as the functional status report, not an ICIDH-2 report. I think it will help our thinking if we can talk about it that way because really this report is about functional status. And, of course, there is a whole lot before we get to these recommendations, before it would be written to the recommendations.
DR. NEWACHECK: I think also No. 3, we probably ought to try to avoid jargon like the A37. Some of us, even on this committee don't know exactly what that is.
MS. KANAAN: So, structuring one or more fields in the --
MS. GREENBERG: -- encounter --
MS. KANAAN: And do you need a form or --
MS. GREENBERG: Transaction, the claim/encounter transaction.
DR. STARFIELD: Well, it is not only the --
[Multiple discussions.]
PARTICIPANT: What are you recommending here?
DR. STARFIELD: Claim/encounter records for documentation, something like that, as long it is not --
DR. NEWACHECK: Do we need to say computerized medical records here, too?
MS. GREENBERG: We already said it should be in computerized patient records and the range of settings. It should be reported routinely in administrative data sets.
DR. STARFIELD: But also clinical data sets. I think claim/electronic medical record would do it here, too.
MS. GREENBERG: No. 1 is on computerized patient records. No. 2 is on administrative data sets.
MS. KANAAN: Three is really the operative words that policy makers should give attention. I don't know why that second sentence got out as -- that got outed in the discussion and it seems as though it doesn't really belong there.
MS. GREENBERG: How would it be collected and -- I think up until now I thought the assumption was that if it were collected in administrative data sets, the idea is that it would be somehow captured on the claim/encounter.
[Multiple discussions.]
Well, no, I don't know that would be immediately obvious, though, to people.
DR. KENNEDY: Or are claims/encounters a specific subset of a more general rubric of -- I mean, could administrative data sets include, for example, say, only enrollment forms and that it wouldn't be on the encounter forms? I am not sure --
DR. NEWACHECK: What if we just change 2 to read functional status information should be reported routinely in the administrative data sets, including claims and encounter records as a core data.
MS. GREENBERG: Including claims and encounter records, I think. You could stop there.
PARTICIPANT: You are saying not put as a core data element?
MS. GREENBERG: I didn't hear what he said.
DR. NEWACHECK: We are just saying it should be a routinely collected item.
PARTICIPANT: Including claims and encounter records. Okay. And what have we done to 3? They have taken it out? There, as I say, I think the concern was, you know, not that this should happen, but policy makers should pay attention to this, but --
DR. NEWACHECK: In the final report, we might have these recommendations --
MS. GREENBERG: Did you not get rid of this terminology as a core data element? I mean, since this all comes out of the original recommendation that it be a core data element, going back --
[Multiple discussions.]
DR. NEWACHECK: In the past you have also had a preamble to recommendations and so in that preamble, you can say this is what builds from our previous work in core data elements --
PARTICIPANT: Okay.
DR. NEWACHECK: One last thing on No. 10 or what is 10 in this version. I am not sure what it is -- it is about privacy issues surrounding -- must be identified and addressed. We might want to change this to a recommendation or a referral to the Privacy Subcommittee.
DR. STARFIELD: That actually has already been done. I mean, it is hard to say something like that here.
DR. NEWACHECK: But to continue it, just to say -- because we have done it and I think we should say that in the preamble, too.
MS. GREENBERG: Actually Kathleen Frawley knew it was done, but I don't know that the new --
[Multiple discussions.]
MS. KANAAN: -- say he would take it back to the committee again?
[Multiple discussions.]
MS. GREENBERG: I didn't understand what this sentence -- does the ICIDH meet the standards for privacy? I had no idea what that meant. That is in (b) there.
MS. KANAAN: That is -- now we are going back to the outline.
MS. GREENBERG: It is related to this No. 10 because I think the issue was did it raise any particular privacy -- but I guess that is what you are going to ask them to look at again.
MS. KANAAN: I wasn't sure that "met the standards for privacy meant" either. It was a phrase that was used by somebody --
[Multiple discussions.]
We can just delete that last question under (b), right?
MS. GREENBERG: Yes. Well, you know, there are two different views on privacy -- well, there are many but one is that some diagnoses are more sensitive than others. Some functional status information is more -- you know, some medications are more sensitive. The other view, that all of this information is is this person identifiable, is potentially sensitive and what is sensitive to one person may not be to another and that not to make distinctions, although state laws, I know, have made some distinctions in mental health and you can't ignore that certain things are stigmatized.
But, I mean, I think generally the committee took the position in its initial recommendations on privacy back in 1997 or whatever, that do not segment, that they give a higher level of privacy to this than to that.
MR. HANDLER: I know in 1989 when NCHS adopted a standard for the birth certificate and added questions on smoking during pregnancy and drug and alcohol use during pregnancy and then the standards for protecting the privacy of birth records was heightened and the same thing when AIDS became a diagnoses, more and more, you know, prevalence, also around 1987, 1988 and 1989 and then death records got a heightened awareness in protecting privacy.
Those are topics that at least in birth and death records increased the level of the confidentiality --
DR. STARFIELD: Also, we learned this morning that psychotherapy notes requires authorization -- that psychotherapy notes disclosure requires authorization not just consent. So, that may be a special issue.
MS. GREENBERG: ICIHS covers the whole --
DR. NEWACHECK: So, Dan says we have about another ten minutes or so. We need to cover one other issue. So, just a couple things. One is audience for the report. We talked about this earlier --
MS. GREENBERG: Is it 10 to 4:00?
DR. FRIEDMAN: It is 10 to 4:00.
DR. NEWACHECK: We need to spend some time on the OMB 15.
MS. GREENBERG: We have until 4:30 on that, don't we?
DR. NEWACHECK: I thought we had until 4:15. 4:30 is fine. We can go straight.
I think it might not be a bad idea to take a five minute break.
MS. GREENBERG: A five minute break I would vote for.
DR. NEWACHECK: Just in terms of the audience issue, though, to help Susan think about how this report might be written, do people have ideas about who we are trying to really target?
DR. KENNEDY: I know for one, the WHO would be very interested in seeing --
MS. KANAAN: I can give you Lisa's thinking. She doesn't think there is anybody out there who is dying to get this report.
[Multiple discussions.]
MS. GREENBERG: I would say the WHO Collaborating Center, the North American --
[Multiple discussions.]
MS. KANAAN: But in terms of prospective target audiences, also standard setting communities, HHS people working on Health People 2010, insurers, practitioners, such as OT people and mental health people.
[Multiple discussions.]
MS. GREENBERG: To the extent that you make recommendations on demonstration or testing or pilot studies that need to be done, I would say that both ASPE and, say, Justice would -- and maybe other parts of the Department that are interested in --
PARTICIPANT: Should we say somewhere that committee members are willing to go around the world --
PARTICIPANT: Sure. I am so glad you can afford it.
DR. KENNEDY: Actually, I would like to supplement and complement your question in that I just got an e-mail today, the American Speech Language Hearing Association will be voting in March not only to include the ICIDH-2 model in their new scope of practice, but also to reflect the ICIDH-2 philosophy throughout and the American Occupational Therapy Association is writing the ICIDH-2 into its preferred practice guidelines, as well as the work I think you have heard about from Marjorie and me on the American Psychological Association doing the assessment on standardized assessment manual.
So, the professional organizations not only are picking it up as in the Recommendation 11, but getting to your audience notion. The people who are worked on this can also use this as leverage with their -- this report within their own organizations to promote it even further because that gives them sort of an outside other endorsing body, if you will.
So, I think it is one hand feeding the other and they would be very eager, willing audiences where we would have some very practical implications then for future development.
MS. GREENBERG: Just the support for functional status they would find refreshing.
MS. KANAAN: But it is interesting that those particular audiences to the extent that it is for them to use it themselves, we would be preaching to the choir about the importance of functional status. So, this was originally conceived of as a report to convince people about the importance or to sort of raise the profile of functional status --
[Multiple discussions.]
DR. KENNEDY: In some respects it is buying a choir new choir uniforms. No, seriously. I am serious because, yes, they have been preaching it, but they have been preaching it to their own little choirs, but then there is this, quote, unquote, what they perceive of as the larger medical community that -- and the larger community that they are not sure ever heard that message or hears it so well or so eloquently. So, when they get something like this from the National Committee on Vital and Health Statistics that is an advisory body to the DHHS, they can turn around and go look, see --
MS. KANAAN: So, it is an educational and advocacy tool for the bodies.
DR. NEWACHECK: That is one purpose and the other purpose is really to create awareness.
DR. KENNEDY: Places like that American Psychiatric Association are already starting to convene preliminary work on DSM-5 and has a disability workgroup set out, thinking like considering ICIDH and functional status as one of the new axes as they reconfigure.
MS. GREENBERG: Actually at ICIDH, the DSM --
DR. KENNEDY: I mean ICIDH-2 -- well, part of the thinking. Let's put it that way. This is very preliminary because they have the global assessment of functioning skills, Axis 5 now, and it is a summary scale,but it summarizes very many things. No reserves, but a lot of things that are all vertebrates in there. But this may be another way of cleaning up some of the stuff that is a little less conceptually crystal --
DR. NEWACHECK: One of the other issues that we have deferred from the conference call was this definition of functional status that -- the committee's view,their perspective on functional status. I know several people tried to make definitions, including myself -- not consistent with ICIDH, but actually I didn't intend it to be because we are being revisionist, we started out not thinking about ICIDH. We thought about a functional status, even though we never really defined it as a group, but I don't think any of us had this broad conception of ICIDH in mind when we started this project. It was sort of -- it came to us later. So, I think we did have a more narrow perspective to begin with, which became broader. And I don't think it is really fair then to say the committee started with this kind of consistent view of the world that ICIDH presents --
DR. STARFIELD: Although even I thought your definition was terrific. I hated to see it go, but the reason --
[Multiple discussions.]
WHO has defined health as --
MS. GREENBERG: I don't agree with them on that.
DR. STARFIELD: I don't either.
MS. GREENBERG: Actually, when the committee recommended that functional status be one of the core data elements, they talked about there was no way -- one of the possible ways of collecting would be ICIDH. So, they kind of knew about it going back then, but, you know, I think that is a fair statement.
DR. STARFIELD: Should we consider supporting the Nordic(?) Center? We could do that, couldn't we? I mean, not we couldn't do it, but we could recommend that.
MS. GREENBERG: We already recommended it.
DR. KENNEDY: At this point, they are just sort of crossing the i's and dotting the t's.
MS. GREENBERG: I think maybe in the next update or the next version of it. They got it past the EB. It was separated out from the things that -- the whole reason, actually, I think that it was recast in this broader health view was to fit it in with the surveys and the summary health measures and then those got stripped from the resolution. That is actually the point of the Nordic Center, but it is kind of ironic, but at this point, I think, you know, that they are not going to make any major changes to it.
DR. KENNEDY: What I would do with them calling it health status instead of our functional status, is I just apply my international thinking to it and I just do what I call simultaneous translating.
DR. STARFIELD: And it is not an ICIDH anyway.
DR. KENNEDY: Yes, because people use words differently. The British and the Americans do. I bought a -- I was trying to teach myself a foreign language and so I bought tapes to listen to on the Metro coming to work and I made the mistake and I didn't realize it, but I made a mistake and I advise you all to never buy one of these language tapes that is put out by a British company because when they start talking about pronunciation and then they compare it to the English, they are not -- and it makes a difference because then you don't hear what the difference is they are trying to talk about because you are not hearing it in your own language.
So, I even have to simultaneous translate from the British to American.
[Multiple discussions.]
There is a funny disability story about -- oh, I know. The British way of saying, you know, how well you get along with people is getting on with people or getting it on with people, which, of course, can have a very different meaning here. So, they had a whole chapter on getting it on with people. We had to explain that is a whole very different thing in America.
DR. STARFIELD: That is true in Canada, too. They use health promotion very differently.
DR. FRIEDMAN: So, we are going to let Susan wrestle with the definition. Are there any other things that you wanted to bring up?
MS. KANAAN: I think the things that I was concerned about are pretty well taken care of.
DR. STARFIELD: What about Kathy's thing? Is that an issue?
MS. KANAAN: I think that is going to be okay. That will be more like an internal suggestion.
PARTICIPANT: As I looked at the recommendations and I still am just really beginning to understand this whole area, but it seems to me there was a sort of implicit process in the steps that have to happen with ICIDH before anybody can use it. You took care of the major contradiction, lack of order in it, but I guess next time around that will be a big question.
Have we really presented the recommendations and the process in the logical order in terms of, you know, not getting ahead of ourselves. I think, you know, looking at it in context --
MS. GREENBERG: Do we have our five minute break now?
[Multiple discussions.]
DR. FRIEDMAN: Provisional guidance on the implementation of the 1997 standards for federal data on race and ethnicity. At John's request, Vickie has heroically agreed to present the issues of this --
[Multiple discussions.]
DR. MAYS: How much time do we have?
DR. FRIEDMAN: I would say we have got around 15 to 20 minutes.
DR. MAYS: Oh, okay. I thought we were supposed to be going to another meeting. Okay.
DR. FRIEDMAN: There is another meeting in here at 4:30.
DR. MAYS: Oh, 4:30. I thought it was 4:00.
I am not sure exactly what it is we are going to do, I will tell you, because -- a little bit about this and then I think it is -- the issue is determining what the committee wants to do because there is a -- if you look in your packet, in the gray folder, I think that with the time we have, this is probably the easiest thing to do is if you look in the gray folder, what you will see is that currently the OMB has this document on a web site along with three other appendices for comment.
Now, I have not read this whole document since John asked me to do this within the last two weeks. Instead, what I did was I know some of it and I focused the time that I had on actually starting to read some of the papers. There have been a series of meetings, of conferences and individuals who were well aware of what was going to come out and they have been quite active in producing some papers.
So, that was what I focused on in terms of that that I could get through.
Let me talk about what I think are the major issues. What is before the committee is whether or not we want to comment as a committee. The deadline is March 19th. So, I think structurally, as I understand how this group works, what that would mean is that this subcommittee would be responsible for coming up with something and either asking the full committee's permission to move ahead and, you know, have the authority to comment or to generate something that it would then send, I guess, by this date it would be to the full committee via e-mail or something, get feedback from them and then get the letter in.
So, that is the process. The issues, this -- in looking through people's comments, as well as the bit of the actual report that I did, I would say that there are probably three things that are the major pieces. I am trying to keep us on what I consider to be the big ticket items as opposed to getting into some of the smaller arguments.
I think one of the big pieces is the characterization of multiple race and that is to think about the issue of the tabulation methods. Part of that has come up a little bit today when there have been presentations in terms of I guess people raise questions to NHIS. There the issue that we are talking about is that there are recommendations about how to do this and, you know, in the time that is here -- I mean, if people want to ask, then we will explain it, but I mean to some extent it is looking at from, you know, people classified as a single race to people being classified as multiple race and what the implications are in terms of kind of minimum and maximum allocation.
Now, what I will tell you is that when you look at some of the data and the data that has been looked at has been -- I guess the census data dress rehearsal in 1988. So, they looked at it. They chose counties and I can tell you very clearly because I knew quite a bit about Sacramento. That was one of the counties that they chose to do some of the dress rehearsal. What you will see is that there is a high percentage of individuals there -- higher than in other places -- don't want to say a high percentage -- higher than other places where individuals were, for example, checking more than one race.
It is very consistent, the pattern of what they were doing. And you don't in any of the -- either the dress rehearsals or a subsequent study that was done in 1999. I think it is the ACS and I always forget what it stands for '
-- thank you -- American Community Survey.
You don't see people really choosing 3 and above quite a bit. So, I mean, some of the concerns that people had about tabulation and that, what we are going to see is people, you know, checking, you know, five things, six things. I think, you know, we can move on from that and that seems to be pretty much that you can understand the rationales of what has been done.
But the question of then how you tabulate how it counts and what its implications are are really, I think, what the bigger issues are for this. So, once has to go through the details and kind of think through what it means. For example, you have legal scholars saying that, you know, now that in the past when we have to worry about the concept of civil rights enforcement, that you have people who didn't have protection before because they are now like say part white and some minority group getting protected. Is that something that we want to do?
So, there are a lot of issues that have been raised about the data. See, the issue with the data is we think about the data in terms of health but if you really ask the question of why was this initially done, some of this initially was done in terms of the collection of data by the Federal Government for civil rights purposes. And there are still issues for those purposes. So, there is a wide range of usage to the data.
I think that is something that as we each bring our sense of what we want to see the data do, we have to understand that different groups need -- within just the Federal Government, we need to use it in different ways.
MR. HANDLER: This isn't going to be hypothetical much longer because there are going to be releases made by the Census Bureau in March at the state level, individual states on a flow basis and all states will be released April 1st, maybe it is April 15th, for reapportionment purposes. They are going to show 63 different combinations of single race, two races at a time and three races at a time, all the way up to six races at a time with all other categories. So, 63 combinations of race are going to be released at the state level and at the county level. They are only going to show all ages and 18 and over.
I was at a press conference that the Census Bureau provided at the National Press Building last week on Thursday and we are going to start to see this, actual live data coming out and it is going to be used for reapportionment purposes and data by sex and more detailed age groups are going to be coming out a little bit later, but the first cut is going to be all ages, 18 and older, 63 possible combinations.
DR. MAYS: None of this is hypothetical because the data is collected and I think in terms of the data the issues are recommendations about how it should be used. That, I think, is what is open for comment. The other issue that is one for comment is the bridging techniques. I mean, bridging, I think, is critical, particularly for the populations, in terms of how that is done and what the implications are.
Again, you just got, I think, a taste of it when the question was asked for NIHS about what it is that they have done and they, I guess, put -- changed their race question back in 1997. So, I would say those are two issues.
A third and I guess I am a little ambivalent about exactly what the committee's role is in this one, and that is this issue of consistency or uniqueness in the method that is used across agencies. I mean, the sense of a -- how do I say this -- if you look at what is going on currently, it is almost like the comment of, well, the census has moved out front and the census has made decisions about what it wants to do.
NCHS is -- you know, different agencies in NCHS are trying to get waivers and determine that they don't have to use certain methods. The issue is what do we lose or gain in allowing that diversity to be there. You know, is there going to be some suggestions that, for example, across the various surveys that there is some, you know, way in which you can do better comparison.
Currently, it doesn't look like it and everybody has a reason why they need to, you know, use whatever particular method they are going to use. Again, it is because one person may be doing it for clinical reasons. Another person may be doing it in terms of research. Another person may be doing it in terms of enforcement. So, the issue of the commenting on that, I guess, I am not as clear on it. I need a little bit more time to figure that out because I also think --
MR. HANDLER: I know my agency is going to try to get access to data that has American Indian identified separately, plus American Indian in combination with any other race and as many other combinations as we can get because there has been an undercount of the Indian population; in 1990, 12 percent were not identified that lived on reservations and they still weren't identified. That is basically the definition of the people that we serve. They could be mixed heritage, but if they are a member of a fairly recognized tribe and live in a particular county, the 630 counties we serve, we serve those people no matter what their racial background is, as long as one tribe picks them up.
Now, when you have combinations of race, the same person could be in a combination black and Indian and then there is double counting. That is the problem.
DR. FRIEDMAN: In terms of the third issue that you raised, I think that there are a couple of different sub-issues and then it gets absurdly arcane very rapidly, but one issue is the census has a different standard than the recommended standard. So, that is one of the two issues and I think the second issue is that it seems that even among programs that have essentially similar focuses there will be a great deal of diversity in terms of how the data are collected.
[Multiple discussions.]
DR. MAYS: It is not collected. It is how it --
MS. QUEEN: [Comment off microphone.]
DR. FRIEDMAN: -- separate standard within OMB that is different from everybody else. They essentially got a free walk.
MS. QUEEN: [Comment off microphone.]
DR. MAYS: I think their combinations go up to like 157, I think it is, when you put in the other races. When it is without the other races, it is like 63. If we keep it to the one question format, then it is down to like five.
DR. FRIEDMAN: I think for the public health data sets, the issue is for the standard public health data sets are we going to have a single standard or --
MS. GREENBERG: If you are using denominator data, don't you have to use what census -- the way census -- I mean, how are you going to manage that?
DR. FRIEDMAN: It is a longer discussion than we have, Marjorie, but historically census has allocated the others.
[Multiple discussions.]
DR. MAYS: So, I think the issue is that whether or not we can do this in the sense of with the short amount of time and the amount of material there is to digest, to either as a full group or smaller group pull together a letter. My personal opinion is I definitely think we should. The question is whether or not we will be able to come to some agreement about what we should say. Then, you know, the time that is needed to get it to the next -- to the full committee, unless the full committee gives us the authority to move ahead.
[Multiple discussions.]
Can't you send a letter out to the full committee and just have them -- I don't know how you work, but it is like can't you just -- if we come up with a letter, can't you just send it to the full committee?
MS. GREENBERG: If you come up with a letter, I mean, you could present what you are planning to do tomorrow and get an agreement on the process. The process, I think, would be that you -- the whole subcommittee or a few people would agree on a letter and then it would go to the full committee and I think for -- I think we would have to have a conference call probably and we would have to have a quorum to approve it.
PARTICIPANT: A quorum of this group or --
MS. GREENBERG: No. I would have to have a quorum of the full committee.
Now, alternatively, I mean, one possibility is, I guess -- I mean, one possibility is that the subcommittee could just write a letter, but it wouldn't have the force of the full committee. I know the subcommittee doesn't -- occasionally, subcommittees have written to parts of the Department or something, but it doesn't have the force of the full committee. But I would think that -- you know, we did that with the ICDIH letter. We had a conference call and I remember when the quorum vote came on, everyone cheered.
You could have some discussion back and forth by e-mail, but actual, I think, approval would have to be in a conference call because they are not meeting again.
[Multiple discussions.]
DR. MAYS: Then the other is the question of whether or not we can come to enough agreement. My guess would be that I think there are some points that we would agree on and there are some points that I think we may differ on.
PARTICIPANT: What do you think we would agree on?
DR. MAYS: I think we would agree on probably comments about the bridging method and probably the importance of the bridging method. I think we probably will come to some agreement around a range of options for tabulation. I don't know that we are going to agree on this other issue about -- because I think it is very loaded in terms of consistency and who should be doing what and the extent to which one should be able to get waivers for doing it. I think that is a bigger, longer discussion.
But I think in terms of, you know, tabulation that if we present it -- I guess I think that that is like, you know -- it is just good science in that. I don't think -- I mean, there are politics behind it, but I don't think it is a problem.
DR. LENGERICH: [Comment off microphone.]
DR. MAYS: From some of the old methods to the new methods and ensuring that, you know, you can actually do that so that you can look at trends.
MS. GREENBERG: Is that consistent with the guidance? I mean, are there things that you feel would be useful for the committee to weigh in on because that would give support to things that, you know, you think are positive and others might not support. I mean, is --
DR. FRIEDMAN: Where there would be some added value.
MS. GREENBERG: Yes.
DR. FRIEDMAN: I have a somewhat -- from my perspective, which is parochial, I think that what would be most helpful would be talking about data collection issues. I think the bridging and the tabulation issues are very important, but I see those as -- as just troublesome and less loaded data collection issues, but I think that data collection issues, the education of data providers, education of data subjects is where I am most concerned.
MS. QUEEN: [Comment off microphone.]
DR. FRIEDMAN: It provides options for different
-- there is more than one --
DR. MAYS: Can you give me examples because I guess I am unclear when you are saying collection? I mean,, analysis is one thing. The tabulation is another thing, but I guess when you say the actual questions -- I mean, are you talking about a different way for them -- they have collected the data. So, are you saying --
DR. FRIEDMAN: That is census, but the -- I am sorry. Census has collected the data but the guidance pertains, I think, to all federal race/ethnicity data in addition to census. So, for example, what concerns me are the data that -- post 2003, the AIDS data, birth data, communicable disease data, you know, et cetera, et cetera. Hospital discharge data set.
MS. QUEEN: [Comment off microphone.]
DR. FRIEDMAN: The interpretation of those seem to vary. What we get and we are downstream -- you guys are upstream. We are downstream and what we get at the end of the stream isn't too consistent.
DR. MAYS: Let me just raise -- because, see, this is why I think in terms of what we can do it was going to require more discussion but I think that this issue of the way you are talking about collection is really maybe -- I am thinking about it more in terms of the issue of interpretation. In terms of this document, as I understand it -- I admit I haven't gotten to the total end of this 200 pages -- is on --
MS. GREENBERG: Tabulation.
DR. MAYS: Exactly. So, I guess I am confused. I mean, I think it presents opportunity for discussion, but I think if you are saying what the open call is in terms of comments right now, maybe I have made it much more narrower than is warranted. That is why, I guess, I think that that is okay.
DR. FRIEDMAN: Well, that may be the best thing to concentrate on. You may be right. We may just not be able to reach --
MS. GREENBERG: Well, there is this whole chapter I see on data collection.
DR. MAYS: That is what is recommended.
DR. STARFIELD: We are only talking about data that are already collected. Right? We are not talking about data that should be collected.
DR. MAYS: The comment is on the procedure for the collection of the data which has already been done in terms of the census, which as I understand it -- and maybe this is why I am in error -- has already been recommended that this is the approach that all of the federal agencies take, unless for some compelling reason they requested a waiver.
[Multiple discussions.]
So, I don't understand it as the other agencies will make choices and they will wait and see until the data comes out.
DR. STARFIELD: Well, for example, Medicare does not collect these data. So, this doesn't apply to Medicare.
MS. GREENBERG: But they say they get it another way.
DR. STARFIELD: So, it doesn't apply to Medicare, right, even though it is federally collected data. It just doesn't apply because they don't collect the data.
MR. HANDLER: When race is collected, it has to be done this way. If race is not collected, it doesn't have to be done.
DR. MAYS: And when race is collected, it is my understanding that for all federal agencies that are going to collect it, that this is the way they want it collected. So, I guess, again, unless someone tells me different, that was my understanding.
MS. GREENBERG: Well, you can ask the two questions or the one question.
DR. FRIEDMAN: It is more complicated, I think, and we can get into even the three weeks, Marjorie, but there is a huge amount of risk for variation in how the data are collected. How the data are collected has -- leaves a huge amount of variation of risk for what we are going to end up with in terms of comparable data.
DR. MAYS: I would agree with that but it is more in terms of this issue of consistency or uniqueness and different agencies getting waivers or different agencies saying they are not -- they collect this data differently. So, again, you have the -- I mean, we could do it -- if we go down that path, then this document presents the opportunity to then comment on lots of things. It is almost like, well, oh, by the way, now that I am here, let me also comment on other things.
I guess I was taking it, and given the time that we have, in a very narrow way. So, I would tell you I think that there are some complicated issues and that what we really should do is to have a presentation, lay them out and then have a discussion. I don't think that that can be done for that kind of response by the 19th. I think we can just be on record with a response, which I think, you know, the group should be, but I think it is to take the very simple issues.
DR. NEWACHECK: If we write a letter that just addresses a few issues and neglects the other ones because we haven't had time to deal with it or think about it, does that imply that we don't have an opinion about those other issues or that they are okay?
[Multiple discussions.]
MS. GREENBERG: Any comments they get after they 19th, they won't --
[Multiple discussions.]
DR. NEWACHECK: Well, if we do it, it seems like somebody would have to write a draft letter and circulate it and all that.
DR. MAYS: We can make a stab at seeing how -- I mean, if we want to do that. It is work, but this is one of those, again, like let's make sure that, you know, it is going to happen. I would hate to see us say, oh, we have to agree to disagree and then it doesn't go kind of thing, but I mean we can get into the more complicated issues and to see if we can get -- but I guess without discussion of all those issues, I am not quite sure how we are going to do this.
MS. GREENBERG: Dan, you were hoping or thinking that maybe the committee would take a stand on whether at least in say the area of public health data collected in the Department, there should be consistency or --
DR. FRIEDMAN: Yes, but I am not sure that -- I do think that Vickie is right. I am not sure that within -- I have spent I am sure like Susan and -- I have spent a couple of years, I mean a huge amount of time trying to figure out what is in the 1997 diagrams, what is in this document, what is in the predecessor to that document.
I am not sure -- I don't think that we could bring all of ourselves up to speed before March 19th. Having said that, maybe Vickie is right, you know. Maybe we should just focus on the things that are sort of the easier and less controversial points --
[Multiple discussions.]
I don't think on the more -- I think on the points that may be regarded as more controversial -- I don't think people will agree.
MS. GREENBERG: Well, let's say this guidance allows flexibility, which apparently it does, among agencies. That doesn't mean that the committee, if it were interested, couldn't undertake some investigation, testimony, exploration, whatever, and recommend to the Department six months from now or whatever, that despite flexibility allowed for in this guidance, there would be real advantage if the Department would do A, B and C and that could go to the Data Council for discussion.
So, in a sense what you would be asking for or suggesting something more than what is recommended here.
DR. NEWACHECK: What if we just sent a letter of intent.
MS. GREENBERG: That is what I am thinking.
DR. NEWACHECK: It would be just a letter saying that the committee is very interested in this issue; however, because of a change in composition of the committee, we have not had an opportunity to discuss it enough detail to provide a complete response by March 16th. However, we will provide one later. Just so that they will know that it is coming and --
MS. GREENBERG: Maybe include a few things in there that --
[Multiple discussions.]
DR. NEWACHECK: Without even getting the full committee approval --
DR. MAYS: What I was going to say is within the context of that letter, then I am more comfortable putting issues that are concerns if we say that what we are going to do is explore them further. If we don't take a stand on them, but instead just -- and then I think what happens is that it helps them to understand that these are things that, you know, at some point you are going to be asked about and that you need to at least think about.
Then that way I think you can even get it through the group because it isn't like we are saying we are taking a stand as much as -- then that way then I think that it is even okay in terms of our experiences to doing that because, see, part of what I was concerned about in terms of doing this and why I kind of went to the level of, well, let me look at what people in the field are saying is that it depends on where you come from in terms of your work, how you see some of these issues and the extent to which you maybe want more flexibility or less flexibility.
It is like part of what I think is important for us to do is to realize we have to represent the diversity that is out there in terms of how this data is going to be used and not come down on the side of well this is good if you do this and this is good if you are a researcher. I wanted to get beyond kind of my -- I mean, I absolutely know this stuff relative to being a researcher but I think there are some other issues, too. There are other sides to it.
But if we put that in a letter, what our concerns are, I think that really solves a lot of things. How do you feel about that?
MS. GREENBERG: Then you could probably get approval tomorrow just to say that the subcommittee would like to send that kind of letter, indicating areas of concern and --
PARTICIPANT: That will be explored.
MS. GREENBERG: And maybe the Executive Subcommittee could also, you know, look at it just for comfort level.
DR. STARFIELD: No promise in the letter as to which date we are going to have considered it by. Right?
MS. GREENBERG: We can't say at this point.
Yes, but it lets them know that the national committee is not asleep, that it is looking at this, that it has not had time to explore these things in great detail. It does intend to provide further guidance and send a cc to the Data Council co-chairs so they know that you are looking at it also.
DR. MAYS: Plus, that puts the issues out there and I think that is what is really -- whether we agree -- I think we are going to disagree on them, but it doesn't matter. It is like those are the --
MS. GREENBERG: Disagree on resolution but maybe not that they are issues.
DR. MAYS: -- in the field. Exactly.
DR. STARFIELD: But we are going to say something about what we agree on? I do think there are things we could relatively quickly agree on.
DR. NEWACHECK: I think we do that, then we have to go to the full committee, the conference calls and all that. I don't think we -- I think we just say these are the following areas we will be commenting on.
MR. HANDLER: I have a copy of this in my office. I also have attachments A, B and C. Those are more enlightening than even the first hundred pages --
PARTICIPANT: They are. That is why I stopped reading that and I actually have the attachments here.
[Multiple discussions.]
MS. QUEEN: [Comment off microphone.]
MR. HUNTER: [Comment off microphone.]
MS. GREENBERG: Susan, can you work with Vickie on this letter?
[Whereupon, at 4:40 p.m., the meeting was concluded.]