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DR. IEZZONI: Do we need to go around the room. There's nobody here I don't think -- now wait a second, there is one person I don't recognize.
MS. SLOAN: Hi, I'm Pat Sloan.
DR. IEZZONI: Pat Sloan. Where are you from?
MS. SLOAN: At the moment, IPA from Hampton University.
DR. IEZZONI: Great. Let's get formally started then. The agenda has changed a tiny, weeny bit. We are first going to hear from Kathleen Fyffe about the review of the Health Insurance Association of America about ICIDH. And then Marjorie Greenberg has asked to speak to us about some let's say hot off the press developments about ICIDH.
We all know, those of us who were at the July meeting, that there were things going to be happening on it in the early fall. And so Marjorie presumably will be speaking a little bit about that, and Gerry can chime in.
Then we've got to do some reality testing about our report, about the process that we would like to go through to get a report done.
Then I'd like to hear from any of you about the topic that John raised today, and that was addressed by the Executive Subcommittee, which is how to really resuscitate and revive a focus on population-based health at the NCVHS. And we'll finish at five, so we can all go to place on the eighth floor.
So, Kathleen, thank you for coming. And we would like to hear what you have to say.
MS. FYFFE: Before I do that, I was just beeped. The reason I was beeped was because Pres. Clinton and Vice Pres. Gore have just issued a statement about privacy that my office is going to try to fax over here somewhere to me. So that's something that I think the whole committee might be interested in.
Turning to the matter at hand, I am going to talk with you all about the Health Insurance Association of America's reactions and comments about the International Classification of Functioning Disability. And I have about 30 copies of my statement. I will review that and essentially paraphrase it.
I'm Kathleen Fyffe, federal regulatory director of the Health Insurance Association of America, also known as HIAA. And I would like to thank you for the opportunity to provide you with HIAA's comments about the International Classification of Functioning and Disability. HIAA is the nation's most prominent trade association representing the private health care system. Its 294 members provide health, long-term care, dental, disability, and supplemental coverage to more than 123 million Americans.
The comments I'm going to make today are within the context of private disability insurance, and the ability of the classification system to serve its needs.
We believe the proposed coding system must be evaluated on two levels. The first level is that of policy. Several questions need to be asked, such as what is the purpose of the system? Or what can it realistically be expected to accomplish? There is clearly value in trying to better understand relative health and functioning in the populations around the globe, however, it is very important to remember that the concept of disability means different things in different contexts.
For instance, being disabled for ADA purposes -- that's the Americans with Disabilities Act -- is completely different from being disabled for Social Security disability insurance purposes. While there could be benefits to measuring functional limitations, we have to be careful about defining exactly what disability is.
Now the second level of evaluation is what I'm going to call a technical level, and you have to ask whether a coding system is necessary, and does the system effectively meet its goals? And my ability to speak to that is limited, however, we are going to note that the questions that are addressed by any such system are not purely medical, but rather vocational. Rehabilitation experts and other specialists would add much to this discussion.
HIAA supports attempts to better understand, categorize, and measure physical, mental, and social functioning. Public and private programs legitimately use a variety of definitions of "disability" consummate with their specific purposes and contexts. A uniform coding system that is cast as measuring disability rather than function has the potential to disrupt these programs. If individuals are evaluated as having a certain level of disability, then it is likely to be seen as creating an entitlement to benefits.
Because the definition of disability used varies based on specifics of the program that might be under consideration, we believe it is unlikely that the proposed classification system would be adopted by the private sector. We suspect that adoption by public sector programs might also be limited due to the variety of such programs. It seems unlikely that a measure of disability appropriate for the SSDI program would be equally appropriate for workers compensation programs, or for evaluating ADA claims.
We have both positive and negative observations to make about the classification system. First, some positive comments. The three part organization of the classification into body functions and structures, activities of the individual, and participation in society is generally helpful. And it seems appropriate to segregate activity limitations from impairments, and seems to allow for management of rehabilitation services.
Second, the classification seems to say that disability is not purely a medical concept by acknowledging that disease and disability may be independent.
Third, again, a positive comment, the classification recognizes that the term "disability" may vary by location, so that a person could be disadvantaged in one group or location, and not in another location.
Now we have several concerns about the classification system as disability insurers might use it. We question the potential consequences of assuming mental functions under body functions. It has been the experience of private disability insurers that while some mental illnesses and their associated functional deficits are associated with known specific biochemical processes, many disability cases have no known biochemical correlates that have been identified. Such mental illnesses appear to be related to personal, social, and contextual situations, without known biochemical or physiological bases.
We are very concerned about the activity dimension of the classification. This dimension refers to an individual's actual performance. It does not refer to a person's aptitude, potential, or capacity. For the purposes of disability adjudication in social welfare programs and private disability insurance programs, the question of what a person is capable of doing, as opposed to what a person actually chooses to do is critical.
Third, our discomfort is exacerbated by the classification exclusion of personal factors. The classification says that functioning and disability are conceived to be a dynamic interaction between health conditions and contextual factors. It notes the contextual factors include both personal and environmental factors. Although environmental factors are an essential component of a classification, personal factors are not classified because of "the large social and cultural variance associated with them."
While we may empathize with this exclusion, if you omit personal factors, then you limit the usefulness of the classification. Again, personal factors can be critical in determining insurance coverage.
Fourth, in practice it would be a daunting task for insurers and many others to use the classification to code the functional and disability status of one person, given that all persons are likely to engage in almost all the activities and social interactions, and the activities and participation dimensions at some time in a year, it would take an extraordinary amount of resources to master the classification, and then use it to reasonably assess a single person.
We question whether the benefits resulting from such an effort would be worthwhile, aside from specifically funded research activities that would be designed to address specific perceived needs.
Lastly, the World Health Organization recommends users of the classification obtain training through WHO. I would like to emphasize here that private insurers are not prepared to require our claims analysts obtain the skill to use a classification system such as this one. We are also concerned that the private sector could be required to report this information on disability status to the federal or state governments, and we would strongly oppose this sort of development.
In summary, we question whether it is realistic to use the classification broadly for insurance and public policy purposes. The term "disability" means different things in different contexts. Again, persons who are disabled for purposes of the Americans with Disabilities Act can be very different from persons who are disabled according to the Social Security Administration. And we do not foresee the adoption of the classification by the private sector.
Again, I would like to express my appreciation for giving us the opportunity to provide HIAA's comments about the International Classification of Functioning and Disability.
DR. IEZZONI: Thank you, Kathleen. It's obvious that you and your colleagues have thought long and hard about this. Can I just ask whether you had thought about it before we asked the question? And the reason I asked that is to see whether this has been on the radar screen.
MS. FYFFE: For us? No, it's not been. And we have hundreds of disability insurance companies, and we had quite a few people look at this, including some people in the medical areas -- medical directors in insurance companies. They were not familiar with this. So Susan suggested that we go out on the Internet. There is quite a bit of information on the Website that people should look at. This was news to them.
DR. NEWACHECK: Am I correct in interpreting your remarks in terms of the appropriateness of this tool for evaluation in entitlement programs?
MS. FYFFE: Yes.
DR. NEWACHECK: Because I don't think that was the intent of either the desirers of the tool, or of us as a subcommittee. That is, the purposes are much broader and different, that is, they have to do with public health monitoring. They have to do with perhaps influencing practice, maybe risk adjustment. But I don't think anybody ever thought that this tool -- at least among the committee members, and I don't think among the developers -- would be used for eligibility determination purposes, or adjudication purposes.
DR. IEZZONI: I was going to make that point. But I felt badly, because it's obvious that you have done so much work on this with your insurers. It is interesting to hear what their perspective was, because one might think that if it isn't a useful classification for those who are trying to categorize different types of disabilities, then it would important to understand why that might be.
But I do want to underscore what Paul was saying. I think also that we didn't feel that it was necessarily important to code every single dimension. So the notion that you would want to code absolutely every aspect of somebody, and so it would be an overwhelming task, was never something that we envisioned.
Let me just ask Gerry, because Gerry Hendershot from NCVHS, has been very involved in overseeing the US efforts along ICIDH and its development. Gerry, do you have any comments?
DR. HENDERSHOT: Well, the two points that you and Paul made are very important. I think the designers, and those who are considering using the classification never intended that every dimension would be coded for every person. It would be more selective in that.
And there is a particular point you made that Marjorie might want to address. Your criticism of the activities dimension measuring performance rather than capability.
MS. GREENBERG: I'll get to that when we finish here.
DR. HENDERSHOT: There has been a lot of discussion about the definition of -- the distinction between the activities and participation dimension, and a lot of it has had to do with that distinction between ability or capability, and actual performance. And there have been some recent developments in that thinking which Marjorie will be discussing later.
MS. GREENBERG: I did want to clarify sort of along what Paul said, that first of all, it isn't really seen as a disability classification. It is more broadly a functional status; a classification of functioning. And it is not an assessment tool or a measuring tool, it's really a classification. You could develop assessment tools around it.
Cille Kennedy, I don't know if any of you have met her other than Gerry and Dale and I --
DR. IEZZONI: Cille was at our July meeting, I believe.
MS. GREENBERG: She just joined ASPE as the secretary from the National Institute of Mental Health, and is actually the chair of the Mental Health and Behavioral -- what's the name of your task force?
DR. KENNEDY: The International Mental Health and Addictive, Behavioral, Cognitive, and Developmental Aspects of ICIDH. The complement is that it's international, so we work very closely with the North American governing body.
MS. GREENBERG: There are both collaborating centers and international task forces working on the revision process. And I know you just came in. Kathleen Fyffe, who is with HIAA and a member of the committee has just put together some comments from her organization. In particular, Kathleen, you had mentioned here -- I think it's on page 4 -- about some concerns you have related to the potential consequences of subsuming mental functions under body functions.
And I wondered if -- I realize you just arrived, but as the chair of the international mental health task force, if you had any thing to offer on that?
DR. KENNEDY: I'm probably going to be speaking out of context, but thank you for the opportunity. In the body function section, in the body structure section of the ICIDH-2 is the only place where mental functions or the mental component of anything is unique, singled out. That's because the body functions and body structures seek to address the different bodily systems, for example cardiovascular, muscular, skeletal, and the brain being a body system in and of itself.
When you get to the actual activities that a person performs in their participation in society, then there is no unique mental component, because for example, you may not be able to work because you have the flu, because you are spinal cord injured so severely that you can't do it, or a mental function. The etiology is different, and you may want to denote that somewhere else, but the actual performance of activities and tasks does not uniquely specify the etiology.
Does that help?
MS. FYFFE: Well, there are all sorts of alarms that went off. Disability insurers and health insurers in general are very, very concerned when it comes to mental health problems or emotional problems that cannot be measured, cannot be attributed to something that is considered objective. They feel that they have gotten burned in the past because of claims.
So if you structurally put anything related to mental health under what is considered to be body functions, then they get very, very upset. So I think that that's what they were reacting to.
DR. IEZZONI: Did they feel that the information wasn't there? What it sounds like is they didn't like the kind of raw title of where the codes were placed. But in terms of the actual specific codes, and specific classifications of mental health conditions, were they concerned, or was it just the title?
MS. FYFFE: It was the placement. It was the placement within the structure under body.
DR. IEZZONI: But they felt okay about the details?
MS. GREENBERG: Like where would they put consciousness functions? That's not objective, whether a person is conscious or not? Orientation function, intellectual functions, sleep functions, memory functions -- these are real things. I'm really kind of perplexed by that.
DR. KENNEDY: I regret that I missed your presentation, so I may not be addressing it properly. These are not diagnoses now in here.
MS. FYFFE: No, I understand.
DR. KENNEDY: So that that would be a separate issue. And we did, on our task force, have actually disability insurers of UNUM(?) disability, and they were very concerned about the mental health issues.
MS. FYFFE: Michelle Owens?
DR. KENNEDY: Well, she wasn't the member, but one of her staff was, yes. So that was certainly an issue that insurers had to address, and that was highly recognized, but no way did these functions that Marjorie has just read to you, would they be intended as the diagnostic reason, if you will, the etiology for invaded work.
DR. IEZZONI: They would have ICD-9-CM code for that.
DR. KENNEDY: Just as you would for any of the other body functions. You would not have the actual function as the etiological reason. You would have what some people call the health condition, other people have called the disabling condition from either ICD-9 or DSM.
DR. STARFIELD: I would appreciate a little more explanation of the concern, because it's hard for me to grasp it, since there is hardly any bodily function that doesn't have a mental health component to it. Pain is completely a mental phenomenon.
MS. GREENBERG: Did they actually have the books, or at least the two digits?
MS. FYFFE: What they had was what they were able to get off the Internet.
DR. IEZZONI: Everything is on the Internet.
We can't put Kathleen on the spot.
MS. GREENBERG: I'm just curious though.
MS. FYFFE: If you look at what disability insurers do, if someone is considered to be disabled, they are providing disability income insurance payments to that person for the rest of their life, or until they are 65, depending upon how the contract is written. And if someone has a spinal cord injury, or an obvious physical problem that prevents them from working, then they are clearly disabled.
But if you fall into the gray area of having a mental illness that is not clearly diagnosable, but is a subjective type of problem, then disability insurance companies don't want to have to make a payment for the rest of the life of someone who decides they don't want to work. That's what we are talking about, which is rather crude, but it's a very, very big financial liability.
And disability insurers have been burned financially by people who have elected not to work, but would rather take disability payments. And what is their problem? They have a mental illness. Well, what is the mental illness? Well, blah, blah, blah, blah, and it's not clear.
So if you want to strike fear into the hearts of disability insurers, start talking about mental illness and who is considered disabled, and who is not. And so that's what we are talking about here.
DR. IEZZONI: I think ICIDH is simply classifying the functions of the brain. It's not a DSM, which is kind of a categorization of diagnostic categories. So that's why I would tend to agree with Barbara's question. I think I hear what you are saying, that they have been burned, and that they are afraid of malingering and deception. But this is simply a classification system classifying what is evaluated on the evaluation.
So what I was going to ask you, Kathleen, how many insurers -- you said you have 120 insurers that you represent?
MS. FYFFE: We have a little bit under 300.
DR. IEZZONI: Because wouldn't they find it interesting to be able to compare their populations that they insure along kind of basic functional dimensions? Some insurer X has people with these types of functional limitations. Insurer Y has people with these types of functional limitation.
It would seem to me that that might be an interesting thing for insurers to be able to do. And a classification system like this would allow them to do that, because it would take the functional information that is gathered through the medical evaluation process and simply classify it, so it be comparable in plans to another.
MS. GREENBERG: I assume you require some kind of assessment by a health care practitioner that takes the information --
DR. IEZZONI: And then simply classifies it.
MS. FYFFE: I think that the emphasis has been on the diagnosis areas, rather than something like this. So this is not something that has been on the radar screen.
DR. KENNEDY: To embellish on what Marjorie is saying, I have worked at NIMH, the National Institute of Mental Health for ten years. I can hear them being apoplectic about the quality of the diagnostic criteria. There have been great advances.
So diagnosis aside, the nice thing, as Marjorie is saying, that the ICIDH-2 does is it allows for an evaluation, and as Lisa is saying, across one classification system that bridges both mental and physical, so that you can look at the relative diminutions in functioning if you. So that you get the translation tool that helps to calibrate the severity of the disorders, and to reach sort of an etiology-free in this case for you, assessment if you will, of the ability to work or not.
The difficulty becomes, like any episodic disorder, and many of the mental disorders are, but so too are many physical disorders, is when they are not forever and permanent. And you share obviously the same concerns that the Social Security Administration has had with all these.
DR. IEZZONI: And ICIDH is really not meant to deal with that. It's to kind of just classify what is observed at a particular point in time.
MS. WARD: I was just struck by the fact that we might be able -- I think we should find a form of communication back to your disability insurers to help explain our intended application of this, because that's clearly where we are totally misunderstanding each other. And where we can help them understand how this can be useful to them, and would not subject them to some sort of new eligibility status problem. That we can help them understand how this could be useful to them, and not mandatory.
MS. FYFFE: The first time I heard about this classification system was through an e-mail or something, getting back to you, because I had a question, what is this? So maybe you all could fill me in on what the public policy purpose and usefulness of this would be, because I don't appreciate it. I don't understand it.
DR. IEZZONI: Well, you know, Kathleen, we are still working on kind of articulating that efficiently. But I think we almost do have to go back to the core data elements project, which is that there is a sense that to evaluate the health of the American people, we need to know something about how they function.
So when we started this initiative, I made clear that what I was thinking of was this is not a disability project. Everybody functions. Some people function better than I do -- most people do. But this is not a project about identifying needs of a disabled person. It was about Marjorie and Susan and everybody has a level of function, that if we aggregate information about that, that tells us something about population-based health.
Being disease-free is obviously one thing, but if you are disease-free, but you can't function in your daily life, there is kind of a disconnection there that is troubling. So I think that our intention was to number one, just evaluate whether there were any tools out there to fill in that placeholder on the core data element data set for measuring functional or health status, and I'm finessing that a little bit; a lot actually.
MS. GREENBERG: Well, there were two elements in the functional status.
DR. IEZZONI: And once Paul Newacheck very kindly offered a way for us to focus our efforts, because they were rapidly spinning out of control, by focusing on ICIDH, which is after all, a worldwide initiative, that has been well accepted in other countries in the world, we focused on this as a potential classification system.
And so our efforts have really been focused on this as classifying information that is collected in a variety of different ways. But I think it's extremely unlikely that our committee will recommend the publication of this system at this point. I think that we, throughout the last two or three hearings, have hear sufficient reservations about whether it is ready for prime time, and the burden, and what this would really mean administratively for doing this.
But nevertheless, we feel that it's important to raise people's consciousness about the existence of this, about the importance of measuring functional status, and that this is probably a reasonable classification system. It's got its warts, but so do all of them that try to do this.
DR. QUEEN: Just to let people know that when I was communicating with Kathleen, our conversation when I invited her to speak to the subcommittee had perhaps vague terms like what's the feasibility of having functional status on the administrative records, without going into great depth as to what records, how often, for what specific purpose. Questions that I didn't have clear cut and solid answers. So there was certainly an element of --
DR. IEZZONI: Actually, I'm fascinated to hear what Kathleen's people came up with.
MS. WARD: Because your group reacts to it.
DR. IEZZONI: I think it's great.
MS. FYFFE: So really, you are talking about this as a descriptive tool, as an assessment tool.
MS. GREENBERG: Not an assessment tool.
DR. IEZZONI: A classification of assessments of functional status.
MS. FYFFE: Are you looking at other classifications?
DR. IEZZONI: There aren't really other classifications.
DR. NEWACHECK: We started, and we tried to look at others.
MS. FYFFE: Sometimes you have to think with the end in mind. I mean have there been any reports rendered anywhere?
DR. IEZZONI: It's brand new.
MS. FYFFE: But you haven't tested it?
DR. IEZZONI: Well, what I was going to say is let's have Barbara make her comment, and then maybe Marjorie could present, because Marjorie wanted to present to us a little update about what's going on with this. So that might be an opportunity for us to find out what the current status of it is.
MS. FYFFE: Okay.
DR. STARFIELD: Marjorie mentioned the worldwide context. There really is a worldwide context for this, since everywhere is moving to developing instruments to compare population from one country to another. And most of them are based upon disability, life years, kind of variations of it. It's a way of characterizing disability, and this is just a standardized way of characterizing disability. That's all it is.
MS. GREENBERG: Well, it's functional status. It's broader than disability.
DR. STARFIELD: I do want to say something else about what this committee can do. While we might not think that the classification is ready for prime time in administrative data, we could talk about its utility in national surveys. For example, I think in the Health Interview Survey it uses questions that are related to this. But they all start with the phrase, "due to a medical condition" or something like that.
That's not compatible with thinking of ICIDH. So if the second edition of ICIDH-2 is in fact something that we think is useful, we might suggest that that phrase be removed from the national surveys. That's one of the options we have. That would give us a systematic way to look at distribution of disability in the population.
DR. IEZZONI: Dale had a comment.
MR. HITCHCOCK: Just real short. We are talking generally about this for classifying folks. I noticed that Barbara said at one point categorizing people. And you also can say characterizing. I'm wondering if it's the classifying that is sort of putting the fear of God into folks. How this could be used.
DR. IEZZONI: Well, ICD-9-CM is a classification. It's a nomenclature.
MS. GREENBERG: It should be separated from its applications. People are insisting that ICD is a reimbursement code, because it is used in a reimbursement program, but that wasn't what it was developed for.
MR. HITCHCOCK: Classifying to me almost means that you are making an assessment, an evaluation, categorizing someone who has already been assessed and evaluated.
DR. IEZZONI: It has a very specific linguistic connotation, that you are classifying a name of something into various different categories, not that you are making an assessment of it. It's not judgmental. It's value neutral.
DR. KENNEDY: Essentially, to the extent that anybody would ask questions about a person's function, you would ask in the domains of their life that are relevant to your area of interest. So within that, you would get a profile of disease. The ICIDH-2, and the original in and of themselves, do not have some threshold for disability, disabled or not. That's program criteria, because for your insurance purposes, different vans, say some program eligibility criteria. It's more a profile that can be applied to standards.
DR. IEZZONI: Marjorie, why don't you tell us what is happening.
DR. STARFIELD: What was the follow-up on that? Was there a follow-up on that?
DR. IEZZONI: Well, let's let Marjorie give us -- because Kathleen wanted to have a sense of where we are right now, and then we can tie it up. Because I think that this has been actually a very interesting exercise for us.
MS. FYFFE: To oversimplify, if something has been beta tested, then to me, I would say, well, perhaps there are different subpopulations of people in different countries around the world who have been described using this. What does it look like? What does the result look like? I mean what is the outcome of using this descriptive tool? I mean I can't imagine -- I'm very interested in seeing the results of report or whatever it is, or is this thing just out there?
DR. STARFIELD: Well, you have the World Health report. Just take a look at it. You see that one of the measures has to do with disability.
MS. GREENBERG: Although they didn't actually use ICIDH, because they didn't have the data.
I just had one other point of clarification, because I think those of us who are more familiar with ICIDH, and you are more familiar obviously with the insurance industry. This is a useful exchange.
You said under three, "Our discomfort is exacerbated by the classification's exclusion of personal factors."
MS. FYFFE: Yes.
MS. GREENBERG: I guess I didn't understand that, because I don't think it excludes personal factors actually any more than ICD does. Within ICD, you don't know if it is male or female or age or anything like that. That's additional information that you have to have obviously, but it's not included in the classification. Isn't that the only way in which it's excluded.
DR. HENDERSHOT: Right.
MS. FYFFE: No, actually, if you go out on the Web, there is a description out there called the scope of ICIDH. The last sentence under point 3.2 says, "Although personal factors are also involved, they are not classified in ICIDH-2, because of the large social and cultural barriers associated with them." So it talks about contextual factors. It says context factors are both personal and environment. The scheme or the classification includes a comprehensive scheme of environmental factors as an essential component of the classification, but personal factors are not included.
DR. IEZZONI: Gerry, did you want to comment on that?
DR. HENDERSHOT: Just to say that in defining the scope, it's saying that this is the range of entities which are classified in this system. It doesn't say that entities outside that system are unimportant. It just says that we are only going to classify in this range of entities. So things like diagnoses are not classified by this system, nor are things like personal characteristics such as age, race, sex, and so on.
Both of those things are very important in certain applications, it's just that this classification doesn't try to encompass all of that.
MS. GREENBERG: So it doesn't mean those aren't aspects that you need to have. It's just they are classified somewhere else.
DR. IEZZONI: They would be cashiered elsewhere in the coordinated section.
MS. GREENBERG: Yes, and we know they are.
DR. IEZZONI: Right, exactly.
MS. GREENBERG: Well, let me try to give you kind of a brief summary of where we are. If I had more time, I would have tried to write something up, but I didn't have a chance.
DR. KENNEDY: I have a French report.
MS. GREENBERG: I saw that it was sent to me. I didn't have a chance to read it. Is it in French? No, I think it's in English.
As was mentioned, the ICIDH was first developed in 1980, and about 1990, and it's been used in various countries. It's been used as a framework for research, and for other types of studies, et cetera. It's been used by specialty groups like physical therapists, or specific rehabilitation therapists, et cetera. But I don't think anywhere is it used systematically in the way that the subcommittee was exploring.
There were a number of issues with the 1980, although it had quite wide distribution. So they initiated a revision process in 1993. And that revision process is being led by the World Health Organization, and it is coordinated throughout the world by collaborating centers and international task forces primarily.
And so the North American collaborating center, which is housed at NCHS, is responsible for both ICD and ICIDH in North America, which is primarily the US and Canada; other maybe English speaking parts of North America, we haven't really taken much initiative there.
And then there are international task forces like the mental health one, which have people from around the world. There are a number of collaborating centers. The collaborating centers are primarily I'd say North American and European. There may be some others, but that's primarily where they are.
But anyway, so there have been several parts of the revision, and about a year ago, July 1999, they came out with a beta-2 version, which is this red book, short and big. And there has been some beta-2 testing during this past year. We are now coming together to try to synthesize the results of the beta-2 testing, and to make recommendations for any other revisions that should be made in the classification.
With the goal by WHO that the classification will be adopted at the World Health Assembly in May 2001. Exactly what adoption means, we are not sure, except the 1980 version was approved by the World Health Assembly for field testing. And they would like this to be more like it's ready for prime time. It still of course is up to individual countries, et cetera, as to what people actually would do with it.
But there is this growing concept of a family of international classifications, which is primary the mother classification is ICD, with all its warts, but nonetheless now in its tenth revision. So this would be an important member of the family.
There are a number of issues that people have had around the world. One major one has been the clarity of distinction among the different dimensions -- body, person, society. And in particular, person, which has been called personal level activities, and the societal level is participation.
And this was actually raised to the group by Michael Wolfson --
DR. IEZZONI: From Canada.
MS. GREENBERG: When he met with the committee. And he has raised it quite vociferously over in Geneva as well. And it turns out what the WHO is really looking to do, and your reference to the World Health report was very apropos, is actually they are talking about packaging this resolution about ICIDH with two other resolutions, one on summary health measures, and one on surveys of health states.
And they actually are I believe proposing, although we haven't seen all the words, that ICIDH be sort of the framework for the non-fatal outcomes part of summary measures. Summary measures generally are mortality data, and some type of morbidity data, but tending more towards you have your fatal outcomes, and then you have your non-fatal outcomes, which tend not so much to be that you have diabetes or you have heart disease or whatever, but it's what your functional status is, or your disability or lack thereof. And that's as Barbara said, the disability adjusted life years, et cetera.
So that's the context in which this is being seen by WHO. This is a rather new development, because the revision process has been going on since 1993. The emphasis on DALYs and then of course this World Health report is the first one to come out like this with the health system performance assessment, et cetera.
And this is primarily driven by Chris Murray and others who now are at WHO, and are looking for ways to really make some kind of global comparisons among different countries, et cetera.
At the meeting in July, the interim meeting, there was a lot of concern expressed by the collaborating centers and task forces about ICIDH itself, the classification not really being distorted for these purposes, because although this could be an application for ICIDH, it is not one on one. And in a sense it's almost like the insurance industry saying they are concerned about this being used for insurance, or eligibility or whatever.
Well, they would have to assess it to see whether it had that use for them, but it isn't a single purpose classification in that sense. So there was concern about that. And again, concern was mentioned about this lack of clarity between the dimensions.
We just had the North American annual meeting, and some of the beta testing does show when people basically were given some training on ICIDH and then some scenarios to code, in some cases people coded real records that they had, rehabilitation or other records, the majority of it was done with case scenarios. And this lack of clarity in this dimension was clear.
Well, understanding that this was a problem, and wanting a solution, rather as it was put to me, an unambiguous solution, WHO put out a questionnaire on the ICIDH-2 Website, and to all, notifying everybody involved with ICIDH revision about the middle of August. Now this questionnaire -- it's hard for me to be totally objective about it, but I have yet to really talk to anybody who really understood it.
And in addition to finding it quite confusing, and this is a questionnaire about -- sort of mathematical equations -- but does activity really represent? What does participation really represent? The various diagrams and other things. It was kind of an attempt at an economic or mathematical I think, solution to this problem. That if mathematically the two dimensions aren't overlapping, then obviously there is no overlap. That was kind of the concept.
So in addition to people really being very confused by this, and this includes people who have been working on this classification for about seven years, and some of the people sitting around this table, and worldwide confusion, also it was the consensus of our collaboration center and several others -- the Australian, the Dutch, and the French, to name a few -- that several of the questions asked were not relevant to the classification in any event, or to determining the dimensions of the domains of the classification.
However, we have just learned that based on that questionnaire, there has been what I would consider an 11th hour reconceptualization of this classification that is now being -- kind of has bypassed the collaborating centers and international task forces and all this beta-2 testing, and is just going to member countries for kind of consultation, which means a letter will be coming to the Sec. Shalala about this as we believe. Either to her or to the assistant secretary for health; since there is no assistant secretary for health, they may not have caught up with that yet, but it will be coming to our department soon.
This reconceptualization is they said that they found out through this questionnaire process that the two things that people seem to be most interested in classifying where -- and really, this is interesting in relationship to what you said, Kathleen -- what people are able to do, and what they do do.
Now again --
DR. IEZZONI: So performance and capability.
MS. GREENBERG: Performance and capacity. And I want to reiterate that we really categorically reject any conclusions from this questionnaire.
DR. QUEEN: Who designed it?
MS. GREENBERG: The people at WHO. Even they have somewhat disassociated themselves from it. And we had the potential of an uprising at our North American collaborating center meeting when this became known. It was also confusing, because there really wasn't anything written. We did get a slide show. The person, Dr. Ustand(?), who came to the committee, made a presentation over the phone. And then we had a slide presentation, a Power Point presentation that went with it.
So in all truth, I don't think we fully understand what they are proposing. Whereas, the current definitions of activity and participation, we know and love them, and admittedly these are not perfect, but the activity is a performance of a task or action by an individual. Certainly activity was also considered to be observable. And participation, on the other hand, was an individual's involvement in life situations in relation to health conditions, body functions, structures, activities, and contextual factors.
But in any event, participation was more on a societal context, and activities were more at the person level. And there have been problems clarifying this.
DR. IEZZONI: Marjorie, can I just interpret. The tests that you said showed a lot of confusion about that distinction, do you have any of the specific results?
MS. GREENBERG: Yes, we do actually.
DR. IEZZONI: What are things cappa(?) values?
MS. GREENBERG: Well, we did some cappa values. In fact, Gerry really was in charge of the analysis of that data. Now I must say, we don't have huge amounts of cases. It's quite time consuming, as has been noted here, to do these cases. But Gerry actually did a very nice report, which we can provide to the subcommittee, in which study 3, which were these case scenarios, and then the analysis.
And it did show much lower cappa values for these chapters that are at the high end of the activities, and people have seen overlap with the participation. In addition, the Canadian Institute for Health Information, who is our Canadian partner, did what they called an AP study, which actually WHO refused to acknowledge as a legitimate international study.
MS. FYFFE: Because they didn't like what Canada was going to say?
MS. GREENBERG: There are reasons, and they have their reasons. It's been kind of an unpleasant thing that I've been involved with for quite a while, because as the head of the collaborating center, I've been trying to kind of negotiate amongst them all. But they said it's fine if your country wants to do this. In fact, it was stated at the meeting on Thursday -- the poor WHO representative, who was someone pretty low on the totem pole, it's the only person they had let come to the meeting stated that WHO reserved the right to not look at any of the results from the AP study, because it was not an officially sanctioned study.
On the other hand, when Dr. Ustand was asked about that in the conference call, he said, well, look at the results that we received. So who knows? But anyway, their study specifically looked at whether people were able to differentiate certain parts of case scenarios, that this is an activity, a participation, or both. And then what they felt about being able to say that something was both. And if they felt that this was clear or wasn't clear, et cetera.
And I think it clearly points to areas where it was very clear that it was an activity to them. It was very clear -- according to the definitions in the book that it was activity, or not their own concepts, but what they had been trained was beta-2, or that it was participation. They really were unclear about it.
So we have some results like that, which are I think somewhat preliminary in the sense that although they had actually about 300 cases I think in Canada. We also did the AP study, as did the Australians, and they analyzed all the data together. So actually from several countries I think they were able to do some statistical analysis.
Anyway, so this reconceptualization is not based on any of those results, but on this what we consider rather dubious questionnaire. Specifically, let me tell you what the revised activity definition is. With the person execute the task, assuming a uniform facilitating environment, it is the same for all peoples in all cultures.
So it's not even generally whether a person demonstrates the capacity in a test environment, but in a uniform facilitating environment, and the same for all people in all cultures, (a) is not observable, but is deduced where the people may be moved to the uniform facilitating environment to attempt the task.
This is the American Psychological Association's take on it, but it was pretty close to I think what it is. I do have theirs as well here from WHO. And it is, "Can the person execute the task in an uniform enabling environment?" So that's straight out of WHO. Whereas, participation would be, "Does the person execute the task in the current local environment?"
Now executing a task in the current local environment used to be participation. Whereas, this idea of capacity or a uniform facilitating environment wasn't even in the classification. So just from a process point of view, we have a reconceptualization after doing beta-2 testing on a classification that is no longer the classification. So from the point of view of process, it frankly seems rather outrageous.
Now people think that the concept of capacity is important, and not necessarily in this uniform facilitating environment. But it has been discussed as a possible qualifier. So a person doesn't do this, but given certain circumstances, they could. And of course right now activity can be qualified. You can do it with assistance or without assistance, with an assistive device or without an assistive device. So some of these concepts are already there.
Then from a substantive point of view, just some of the concerns that were raised were concern that it doesn't allow for the assessment of an individual in the current environment, no opportunity to classify individual's function in an objective and clinically meaningful way. Potential for stigmatization by focusing on the individual as the problem.
I will share with you we are in the process of finalizing all the recommendations that came out of our meeting. Now we also had a number of more specific recommendations that came out of the beta-2 testing, and we will be sending all of those to WHO. But the message we have pretty clearly is that it's out of our hands. That this is a train that has left the station.
DR. IEZZONI: It's a big change.
MS. GREENBERG: It is quite a big change.
DR. IEZZONI: I'm thinking how can our subcommittee make any recommendations about a classification that's a moving target?
MS. GREENBERG: Also, since you do advise the secretary, and she will be receiving a letter about this, I say no more.
DR. NEWACHECK: Further study is okay.
DR. IEZZONI: We have to describe what we are talking about. In the report, we have to describe what the ICIDH is.
MS. GREENBERG: And all of the people you have asked to testify have talked about ICIDH as being this book.
DR. NEWACHECK: That's how we describe it in our report.
DR. IEZZONI: But it no longer exists.
DR. NEWACHECK: But it may be changing.
DR. STARFIELD: Why don't we table it?
DR. IEZZONI: That's what I was going to get everybody's read on.
MS. GREENBERG: Do you have any interesting in weighing in on the situation?
DR. IEZZONI: I was just going to say I think that the whole notion of writing a letter to the secretary right now to weigh in on what's happening with the WHO is a reasonable thing for us to do. I, unfortunately, do not feel that I have sufficient knowledge of the specifics to be able to draft a letter, or to be able to instruct Susan on how to draft a letter.
So I don't know whether it would be considered bad form for us to ask you and Gerry to draft a letter for our subcommittee to review.
MS. GREENBERG: Cille could work with us too.
DR. IEZZONI: Paul, we had talked about that actually in July. And we weren't exactly how to weigh in, but it sounds like now the flag has been kind of waved.
MS. GREENBERG: It also seems that it fits with what has happened. You have been studying this classification. You have been holding hearings based on the beta-2 version. And there has been this sort of dramatic reconceptualization. I don't think it's necessarily appropriate for you to comment on whether this reconceptualization makes sense, although I certainly welcome your input to this.
DR. IEZZONI: Well, we haven't seen all the documentation.
MS. GREENBERG: No, and neither have we. That's the problem. I can provide you with as much as I have, but just from the point of view of process, it does seem that this is a little --
DR. IEZZONI: It stinks. Could Cille and you and Gerry draft a letter for our subcommittee to consider to send to the secretary, that we can maybe talk about in a conference call?
DR. STARFIELD: Briefly, what is addressed and what we might recommend.
DR. KENNEDY: Prior to addressing your question, as much as this was presented at the North American collaborating center meeting as a fait accompli, I firmly believe it is not entirely a fait accompli. And I don't know what kind of time constraints, but I will be brief.
Let me just tell you what the beta-2 field trials were, and the fact that the data are not yet analyzed. So that there is still time -- and the analysis is being conducted in addition to this last little bombshell we received.
There were three mandatory report field trials. The first one was called translation and linguistic analysis, and for the most part in the US. I don't think anybody translated it, although we did encourage professional organizations to take a look at it, to see if the language violated any of their premises. But I don't think any of the English speaking countries, be they British, UK, or British, US.
The mental health task force was involved and responsible for like six of the translations throughout the world. And the linguistic analysis had to do with the use of the terms and what they meant, such as disability in different languages.
The second field trial was a set of basic questions. There were 12 questions that dealt with some of the conceptual issues, some of the structural issues, coding, the development of how did you see disability? Was it a continuum from body to society, or there were different planes of experience? And those could be conducted in two ways. One was a consensus conference of heterogeneous groups of people, or as individual responses.
The third set of field trials was a set of reliability and feasibility studies. There were three of them altogether. I'll tell you what they were, and then I'll tell you how they were conducted. The first was the feasibility study where you actually took a case, and you were using a checklist that was a subset of the items in here to document whether or not from your perspective the case -- and I'll get into that in a second -- had any of these either body function problems, activity problems, or society level problems.
Then degree to which in a confidence rating in your documentation of this, and your documentation of the severity. And then a summary after you had done all of those, a summary of how that checklist worked for you. Were there any gaps in it? Was it sensitive to age, culture, et cetera? So that there was a way of actually using this in essentially clinical settings. So the feasibility part of that was to do it on a person.
The ways in which it could be done were two-fold. One is to do it on clinical and rehab settings on live cases, and an impressive number of people were able to complete that. And the other was a set of case vignettes. There were 25 of them translated into all the languages that participated in this, so that we would actually get international calibration. There was no one site in terms of the case studies.
The third of the field trials was in this set where interrater reliability studies, where two people would rate the same person, and secondly test and retest reliability to see how it worked over time. Those results are still coming in, so they are just still entering data, and cleaning up the data and getting them in. I think probably by the end of the month WHO will have that.
So they will not have finished the analysis and interpretation of this data. So that would be something that I would recommend that the committee suggest continuing to pursue the findings here. Now Marjorie has clearly highlighted that, because the North American collaborating center has finished theirs. But my mental health task force, because it's from all the world, has not gotten all their data in, and I don't have a separate analysis of that.
So I would suggest to the committee that you recommend that that data be examined in balance with this new recommendation that will be coming, I gather, in a recommendation to the secretary.
MS. GREENBERG: I have absolutely no desire to undecut this revision process. And I think the classification has a lot of important characteristics. And I really want it to have the best chance possible. I think that it is problematic that the process seems to have been kind of leap frogged, and I'm concerned in fact that it will not be well received because of this latest development.
DR. IEZZONI: How does Michael Wilson -- he was one of the articulate critics --
MS. GREENBERG: I have a conference call with him and my counterpart at CHI on Thursday. So we haven't had a chance to talk.
DR. IEZZONI: Can you anticipate what he's going to say?
MS. GREENBERG: No. I should tell you about one other thing that is going to happen. And that is that October 23-25, Michael Wilson, and actually Ed Sondik, but actually Michael Wilson has been leading -- he is going to be hosting with WHO, a conference on health status surveys that actually I'm going to be at, and so are some people from WHO.
And I think Michael certainly has been involved in trying to make all these linkages. So that his view of what activities and participation should be is not necessarily shared by everyone else, or necessarily shared by even other people in North America other than the idea that there is confusion, and it needs to be clarified.
But I think that what happened is that linking all these things together has created some dynamic that was outside of really the revision process. And that is I guess what is causing concern. But as Cille said, it's not over until it's over. And our position on Thursday and Friday was not only do we have to say what problems we have with this new reconceptualization, both from the point of view of process and substance, but we have to be prepared to recommend an alternative.
DR. IEZZONI: But that needs to go through testing as well. Right, shouldn't it?
MS. GREENBERG: Possibly.
MS. FYFFE: How do you determine if it's valid?
MS. GREENBERG: Certainly, yes, we question that. And we categorically reject this questionnaire as a field test. It has actually been portrayed as a field test.
DR. IEZZONI: All right, I want to get a sense from the subcommittee.
DR. STARFIELD: I just want to clarify, what you addressed was the fact that we should wait until we get the results of the field tests. The other thing is the conceptual problem.
MS. GREENBERG: It should shed light on that, because certainly this A and P study directly sheds light on that, and I think the study three, where people coded scenarios too.
DR. IEZZONI: Let me just ask for the subcommittee's view for what we want to do right now. Let me tell you what we had originally planned to do, and see whether any of this changes what we had planned to do. I think that Patrice polled all of you about the possibility of having the meeting that had been scheduled I think for the 24th and 25th of October as being a single day meeting. And I think that the decision was made to have it be a single day meeting on October 24.
At that time, what we were going to try to do is try to basically almost finalize our report on what we have been doing for the last year, including our summary of our testimonies that we have heard about ICIDH, and our recommendations based on that testimony.
So that was what we were planning to do. Then I was thinking that we could maybe finally finalize it at a breakout session at our November meeting, and then forward it to the secretary after that.
Now this has thrown a bit of a monkey wrench into things. I am uncomfortable writing a report about what seems like a moving target, because in fact I think that ICIDH has a lot of promising qualities. And if we go to the extent of writing a report that would inevitably have to talk about this process being kind of waylaid at this point, and nobody knowing what's going to happen, that would make a lot of people just shove it off again.
Kathleen has already told us that the disability insurers had no clue about it. Susan Queen just whispered in my ear that the American Association of Physical Medicine and Rehabilitation physician who reviewed it said that they no clue about it. So if physiatrists don't have any clue about ICIDH, we don't want to be trying to introduce it to the country in a report that sounds as if it is like the Keystone Cop trying to get it finished -- sorry -- so that it could be taken to WHO in June 2001 for final approval, which is what it kind of sounds like.
And so an interim possibility might be for us to send a letter to the secretary to kind of put a hold on our report, except ask Susan to begin to draft kind of in a more formal way, the background section and the testimonies that we heard in January. And the description of ICIDH, the history of it. And not have our meeting in October, but then regroup again at the November, where during our breakout session maybe what we could do is hear the formal result that we have from the beta testing.
Maybe by that point, Cille, will you have your testing done yet, by November?
MS. GREENBERG: Oh, yes. See, the international meeting on ICIDH-2 revision is November 14-16 in Madrid. We're both going to be there.
DR. IEZZONI: So that would happen before our -- when is our meeting? It's at the end of November?
MS. GREENBERG: The very end of November. And in fact, they have to make decisions. If they are going to take this to the executive board in January, by the end of November, the decisions have to have been made about what is and isn't in this classification.
DR. IEZZONI: So let me just be clear then about what my proposal might be. That we ask Marjorie, Cille, and Gerry to draft a letter for us to send to the secretary to kind of weigh in on the process, that we could talk about in a conference call. And so we could -- I don't know, John, we would have to get the full committee's approval somehow to get this sent into the secretary, since there is some time factor attached to this.
And so I would leave it to Marjorie and John to figure out whether this is feasible or not, but for our subcommittee to think about a letter going to the secretary right now about the process. And then for us to cancel our October meeting, and then have us hear the actual results of the testing at our November breakout, because we haven't even seen these results, our committee. And I think it would be good for our committee to see the results before we start to really --
MS. GREENBERG: We can send you like the results that we have in the meantime.
DR. KENNEDY: By Madrid, there should be a new actual document.
MS. GREENBERG: They are saying that by November 1, the new version will be on the Website.
DR. IEZZONI: So that's my proposal. Counterproposals?
DR. NEWACHECK: Well, I agree with everything you said, except I'm wondering about canceling the October 24 date. The reason I'm wondering about is that if we are going to sort of wind this project down or end it shortly, are we going to cease functioning as subcommittee, or do we have other business that we want to start pursuing?
I think one of the problems, and maybe this is another discussion, but I think we need to move to it at some point pretty soon, and that is one of the problems we have had in the past is that the projects of this subcommittee have been kind of idiosyncratic to one person. They have been sort of oh, but I'm really interested in insular territories, or this or that. And they haven't really captured all of our imaginations and excitement, so the esprit that we were talking about hasn't always been there.
And I think that it would be helpful if we could embark on a project that would get all of our interests. And I'm wondering about whether or not -- you mentioned disparities. We talked about disparities a couple of times. We are sort of supposed to be doing that, but we aren't getting to it. I'm wondering if that's an area if we were to focus on information needs and racial and ethnic and economic disparities in health and health care, whether that would be something that would be a useful and worthwhile direction to move into.
In which case, then I wonder if we ought to keep our day that we have also set on our calendars, and maybe perhaps start that kind of effort with some informational hearings or whatever.
DR. LUMPKIN: I actually kind of like that idea, and I would expand it to two items. One is the setting of priorities. I'm trying to remember from the retreat -- I think it's item one and two -- which would be refocusing on population health, and aligning health information strategies with health strategies. And perhaps present the committee with a document that we can approve of priorities. And then based upon that, the subcommittee can then pick whatever the subcommittee recommends, and if the committee agrees, would be the highest priority item.
DR. IEZZONI: Paul, I'm going to put you on the spot. I'm tired. This has been a rough subcommittee to chair. I'm not up to chairing that initiative. Not that I'm not totally interested in it. I think it's a great initiative. I'm not up to chairing it. If we decide to go ahead, to have that meeting, I would like to suggest that somebody else take over as chair for that.
DR. STARFIELD: I'm interested in it, but I can't be here the 24th.
DR. IEZZONI: If Barbara can't be here --
MS. GREENBERG: I haven't actually had a chance to talk to Jim. I don't know whether you did. There is a plan to bring on some new members. First of all, we have two vacancies actually that are vacancies. It's not that somebody is vacating a position. There is nobody there.
I am hopeful that we will have at least one of the new members, who would have expertise in the area that you are discussing. It's certainly a goal, and possibly more than one, because now we have another position that we didn't know a week or two ago that we had. You didn't know until breakfast the other morning. So I think that you could think in terms of sort of trying to do some forward thinking about this, but that there will be some new people to take it forward.
DR. IEZZONI: I actually had not heard the results of Patrice's polling about --
MS. GREENBERG: You didn't realize Barbara couldn't be there?
DR. IEZZONI: I didn't realize Barbara couldn't be there at the October 24 meeting. Are there any other people who could not be there? Elizabeth were you going to be there? Kathy was going to be there. I was going to be there, and Paul. I really feel Barbara is critical.
What do the other subcommittee members think about the October meeting? My feeling is I'm not really into having meetings just to have a meeting.
DR. STARFIELD: We talked about that this morning, about cutting out things that we really didn't need.
DR. NEWACHECK: I don't think we should have a meeting just for a meeting's sake. I think we need to make some progress on some important activity, then we should do it. But if you are feeling like you don't want to take this on --
DR. IEZZONI: I don't have the energy to do it.
DR. NEWACHECK: I understand.
DR. IEZZONI: I also think Marjorie's point about the new members coming on is going to be really key.
MS. GREENBERG: That's why we try to get new members who have new energy, and haven't been worn down by the process.
DR. NEWACHECK: Let's make a commitment to the topic area without scheduling for October. But we agree that it's important.
DR. IEZZONI: I think we should make a commitment to the topic area. I agree. I think that John was pretty clear about implying that this morning, that it's very consistent with the department's agenda. Let me just ask you a question, John, that my general medicine fellow asked me. We will be getting a new administration on January 20th. Does the disparities in health initiative vanish when we get a new administration? Or is that something that transcends administrations?
MS. GREENBERG: Well, the Healthy People 2010 --
DR. IEZZONI: I know the Healthy People, but the disparities.
MR. HITCHCOCK: That almost vanished when Clinton came it. They looked at Healthy People 2010 as a Republican initiative.
MS. GREENBERG: You mean they looked at Healthy People 2000?
MR. HITCHCOCK: They looked at it in general.
DR. LUMPKIN: I don't think that there are any guarantees. I don't think that necessarily because it's a continuation from a vice president to a president, one would think that that would mean that things would continue, but no. A lot of times when somebody gets in, they just want to demonstrate I'm much different than my predecessor.
MS. GREENBERG: I'm my own man.
DR. LUMPKIN: So I think that there are no guarantees.
MS. GREENBERG: The disparities won't go away, we know that.
DR. LUMPKIN: To the extent that we can accept that as a priority, and start moving towards advising on the health information infrastructure that would facilitate addressing that issue, I think it would be a contribution that would be important to make.
DR. STARFIELD: The question is do we have staff interested?
MS. GREENBERG: We have some.
DR. STARFIELD: I think one of the first things we have to do is go through Healthy People 2010 and identify things.
MS. GREENBERG: I would say if you wanted to pursue this, it's the department's responsibility to provide you with staff, since it's a departmental initiative.
DR. QUEEN: You are talking about racial and ethnic disparities? I'm involved in several other committees on that. Physically, that ties in very much into some of I'm already doing.
MS. WARD: The idea of trying to predict what will a federal administration do, I think what we have to do too is look at what happens at the state level, regardless of party or administration. I go to meetings on a monthly basis where people are struggling over the need, because they are working in culturally diverse, and economically diverse populations with this issue.
They keep trying to figure out how to collect data about it. They keep doing what I unfortunately two weeks ago, or actually a week ago described as garbage at a meeting, creating data about disparities out of these convoluted extensions of our national data, trying to make something relevant to the state level.
It's an issue certainly in Washington. I go to meetings constantly about it. They don't care who is president. They are dealing with culturally and economically diverse populations, and don't know how to measure the problem. I think perhaps we could get some sense from other public health population folks through John, to get a sense of what's the magnitude of people's concern out there, so it doesn't become just an issue of what a particular administration is concerned with.
DR. IEZZONI: I hear an interest and the need for it on that topic. I certainly think it's a great idea. We don't have any other subcommittee meetings on our agendas though. And that's a problem, except the full committee meeting and the November, where we are really going to try to get some information about this topic, the ICIDH testing.
And it's hard to think about scheduling future subcommittee meetings around this topic if we don't know who the new members are, and we don't know what their availability is going to be.
MS. GREENBERG: Let me talk to Jim about it. Hopefully, they can move ahead at least with some of these nominations.
DR. IEZZONI: Okay. So let me reprise what I think we are hearing, and I want to hear the subcommittee's views. Marjorie and John, you guys have to talk together about the committee process, if we are to write a letter, which would have to be signed by John about the process for ICIDH, and our committee's concerns about that. That would be drawn up by staff hopefully in the next week or so, that our subcommittee hopefully would have a conference call to be able to talk about.
MS. GREENBERG: You were sort of motioning there, John.
DR. LUMPKIN: We do have a process. And we can make a recommendation for the process, which may involve a conference call to the full committee to approve the letter.
DR. IEZZONI: The question is, if Shalala doesn't get this for another month, is that a problem?
MS. GREENBERG: I would try to get it to her before a month.
DR. LUMPKIN: It's just a matter of logistics. And that is when do we think the letter can be prepared? When can the subcommittee do their conference call? And after that, we schedule the full committee. So my guess would be we can start working on trying to find a time for all three of those. We just need to have a motion tomorrow that that would be the process we would use to get the letter out. And then based upon what we had agreed as our methodology, how we go about doing it.
DR. IEZZONI: So that's item number one. Does the subcommittee feel okay with that? And so, Marjorie, you would have to really guide us about how quickly you think you guys could get together the letter, the draft, and then Patrice should probably immediately start trying to get schedule the conference call of the subcommittee.
Then the second thing is at the November breakout we will hear -- we will see the new revised ICIDH, and we will hear the details of the results of the testing, and we will make a decision about where we want to go with this report. And we could make a decision at that point that we want to do what so many people are suggesting to us, which is instead of writing a full report, write a long letter or something like that. But we can decide that in November.
And then begin to come up with a subcommittee process for moving towards racial disparities -- I'm sorry, I'm just tired -- disparities in health, and finding somebody to chair that initiative.
DR. STARFIELD: And we should start to identify staff.
MS. GREENBERG: I think Susan said she continues to be interested in working in that area.
MR. HITCHCOCK: I know Olivia is extremely interested in this.
MS. GREENBERG: I guess what John was saying, and sort of what the Executive Subcommittee was saying was that the process would be that the subcommittee what it thought was the highest priority, or maybe a list of priorities, and that would be discussed with the full committee.
DR. IEZZONI: Okay, we have decided. People agree that disparities in health is --
MS. GREENBERG: So you could present that tomorrow, and maybe we can really get the department to move ahead hopefully with the appointments. I'm concerned if that doesn't happen pretty soon, it won't happen for months and months and months.
DR. IEZZONI: Right. That's right.
MS. GREENBERG: And that would be unfortunate.
DR. NEWACHECK: Should we schedule our conference, since we're not going to be meeting on October 24, schedule it for October 24?
DR. IEZZONI: I think that's too late. We need to schedule it ASAP, it sounds like.
MS. GREENBERG: I would say we should try to get this letter written in the next.
DR. IEZZONI: We should get a draft of the letter from you guys ASAP, and then we'll just schedule the conference call.
MS. GREENBERG: Patrice will take care of it when she gets back to the office on Thursday.
DR. IEZZONI: How do people feel about this plan? Patrice has a question?
PATRICE: As far as your schedule, if I can call your office to get your assistant to get your schedule, and everyone else has their calendar.
DR. IEZZONI: She hasn't had access to my calendar. But supposing that was happening today, my secretary left, and the new one hasn't had access to my calendar for a month.
DR. QUEEN: I had sent everyone a draft of sort of an expanded outline. Should I continue doing anything on that? There are still sections that I hadn't addressed yet.
DR. IEZZONI: What do people think? I'm sorry, Susan, we should have thanked you for that, because you did, you spent a lot of work on that. I think it will be used, but I'm a little hesitant to ask Susan to spend too much time on it right now, given that we are a little bit unclear about where we are going. I think it's a really good foundation. I see people nodding around the table that the decision should wait, because we can give more instructions in November, at the November breakout.
DR. STARFIELD: The background isn't going to be changed.
DR. QUEEN: There were some testimony sections that I hadn't filled in yet.
MS. GREENBERG: Is there some advantage to at least asking people to send Susan comments?
DR. IEZZONI: Sure.
DR. QUEEN: I would like any comments.
MS. GREENBERG: I think that would be helpful to her, just to have some feedback.
DR. NEWACHECK: But not necessarily incorporate them at this point.
MS. GREENBERG: In some cases it might make sense, and others not.
DR. IEZZONI: Marjorie, is there any way that we could have a three hour breakout session at the November meeting?
MS. GREENBERG: Your wish is my demand.
DR. IEZZONI: We have almost spent the two hours. It's 4:40 p.m. right now. I think we really need to get a lot of work done on that.
MS. GREENBERG: We're having a conference call of the Executive Subcommittee to plan the November meeting, so I will put down that's your request. You would like three hours?
DR. IEZZONI: I think so.
MS. GREENBERG: I gather the subcommittee is not recommending anything specific for the agenda in November? The full committee agenda.
DR. IEZZONI: No, we don't have any action items for the full committee in November. But we might for February.
MS. GREENBERG: Sure.
MS. WARD: I think we do have a consensus that those of us who are here, diversity and data to measure this is of interest. But that still doesn't get at whether a discussion of some of the other priorities, what would they be, how would we prioritize them, how would we send that forward to the full committee and the Executive Committee to do that kind of not just the next six months planning, but other planning to get out today's project is, rather than some of planning.
And whether we get a sense of whether we are going to get new members. If we are going to get some new members, obviously, we want them to be part of that. If it's going to be a while --
DR. IEZZONI: Elizabeth, let me just give you advice from the position of having chaired this little group for I don't know how long now. It seems like a long time. I would like to wait until Marjorie has a sense of whether we are going to get new members before we have that kind of discussion.
MS. WARD: In terms of November, if we get a sense.
DR. IEZZONI: If we get a sense that we are going to have some new members, let's see if we can get a meeting together for January.
DR. LUMPKIN: I would like to suggest otherwise. And the reason is we have had a tendency to bring new members on and see what they are interested in, and then --
MS. GREENBERG: That was our first mistake.
DR. LUMPKIN: I think what we want to do is at least begin the process, so when they start, they know that there is a process by which this subcommittee and the full committee sets priorities for what it is they will do.
DR. IEZZONI: The Medicaid managed care project was initiated by George van Amburg and Elizabeth, because you were at the state at that time. And George and Elizabeth were really excited about it, and we got some new committee members come in. And they were not excited about it, and they let me know that, in no uncertain terms.
And so I guess I think that maybe we should have kind of an offline discussion, because this would be a good transition time for new leadership on the subcommittee as well. Somebody who might have kind of a better vision of how to articulate that process, because having had a lot of private conversations with the five members who left, I just really think that it is -- I hear what you are saying about it would be good to have a process kind of in place and going. But it just not obvious to me what that would look like.
MS. GREENBERG: I think we should really try to get some new members on by the November. This is September, two and a half months. If we don't get that process going now, once the secretary leaves, we have a void here.
MS. WARD: Then we're waiting forever.
MS. GREENBERG: So Bill and I will talk with Jim. I know there have been some preliminary discussions, and maybe it's like even if we have five positions, and we really are only prepared to recommend three, let's go with those three, rather than try to get all five.
MR. HITCHCOCK: I think it's actually moved along pretty far.
MS. GREENBERG: I think it has. This new development with a new vacancy we weren't aware of, but I think we could at least.
DR. STARFIELD: Are we past the stage where people have agreed to come?
DR. IEZZONI: Have all these people been asked?
MS. GREENBERG: I think the leading candidates have been approached.
DR. NEWACHECK: The 20 days are misleading if you are on the West Coast.
MS. GREENBERG: I have told people that. We generally tell people 20 days, and for people coming from the West Coast, there is more travel time.
DR. NEWACHECK: It's really 30.
MS. GREENBERG: So what's 10 days among friends?
MS. WARD: But I think part of your example of the Medicaid is exactly what we want to avoid. As a member to my first committee, I was oriented to a process which was, whoever speaks the loudest of their favorite topic, gets the committee's silent avoidance/acceptance of what goes on. So rather than being oriented as a new member to a different kind of process, that's what I learned was the way this committee did business was you --
DR. IEZZONI: It was a very awkward time, because Tom Laviste(?) had been chair of the committee. And he had just resigned suddenly without it being real obvious why.
MS. GREENBERG: He didn't resign because you were chair. You became chair because he resigned.
DR. IEZZONI: That's true. So I'm only responsible for four of the five.
MS. GREENBERG: Hortensia also did not resign. She filled out her entire term.
DR. IEZZONI: But she would have been reappointed. She made it quite clear what her reasoning was for not staying on.
MS. GREENBERG: That's different from resigning before you finish your term.
DR. IEZZONI: Whatever. But the point is that I think that we all know that we want to have a process where we all get together, and we all come up with priorities. I think that the group now feels that that is what we want to do. So it's at a different place than it was right after Tom's resignation.
DR. NEWACHECK: Can I just say in fairness to Elizabeth's comments, should we put on the table this issue of disparities. There seemed to be some general interest in it. But are there other topics that we might want to consider in the subcommittee, to be sure that we're not just kind of being railroaded into one thing again that we're not going to be excited about doing? Are there other things that we want to do?
MS. WARD: I think there needs to be a discussion.
MS. COLTIN: The data strategy committee reference this morning, where he said that they were looking at 22 indicators which included the disparities initiatives, as well as the leading health indicators. Any other ideas that people have, summary health measures has come up another of times, and debate the relative pros and cons about those topic areas in terms of initiatives. And then make the decision.
DR. IEZZONI: John, before you say something, let me also say that I have felt that it's been important to try to monitor certain key things that have been going on. So you guys have seen periodically that we have had for example, presentations from Census about minority -- designation of the multiple categories of race and ethnicity and so on.
So I think that our subcommittee does still need to keep kind of an eye on certain things that longitudinally over time that we have to keep our eye on. So my concept has always been that we need to have big projects, but we also need to keep our eyes on some of these things that are going on.
And we need to build in Ed Sondik's request that we help him. And I think it is going to fall to us. When I heard the woman from the IOM today say that they might add MEPS, four more quality indicators, I was thinking through MEPS and NHIS do not have consistent questions about important things such as functional status. I would hate to see MEPS all the sudden become really, really important without having some sense of MEPS and NHIS, National Health Interview Survey, having some commonality on key questions, so they really can be crosswalked.
We have a grant right now where we are measuring disability using MEPS and using NHISD, and we are coming up with different rates.
MS. GREENBERG: HIS is now actually the sampling frame for MEPS.
DR. IEZZONI: It's the sampling frame, but the questions are different.
DR. LUMPKIN: But that's intentional. That's turf.
DR. IEZZONI: That's turf, but we should weigh in on that, because it's inefficient and it's silly.
DR. LUMPKIN: Well, this would just a plea for the process we talked about beginning, that it not be viewed just as the subcommittee playing to the subcommittee. There may be issues that are population-oriented, that are high priorities for which a currently existing work group or subcommittee might be more appropriate for.
What I'm really looking to do is have this subcommittee come up with what should be the population-base priorities for the full committee. And then we can allocate work based upon that approach.
DR. STARFIELD: You know -- work has implications for disparities, and that's a committee issue.
DR. IEZZONI: And I was just going to say that ICIDH is a code set issue that has implications for the data standards subcommittee.
MS. GREENBERG: I just wanted to mention one other thing that is going on, because you had mentioned well, ICIDH possibly being used more in the survey environment. Gerry and Paul I think have told the group about an international project that was done in the last 10 months, in which five countries have back coded their disability surveys to ICIDH. We also had a report from that group.
Working with the UN, they are talking about really taking this forward, and trying to look more internationally as to standards for disability surveys, which is somewhat different than health status. This would be more disability. I just wanted you to know about that, because that is something you might want to be aware of also, or briefed on at some point.
MR. HITCHCOCK: The American Community Survey, the Census new rolling survey of various topics, how the department might utilize that.
DR. IEZZONI: What do people think about whether we have reached the end of our day?
MS. GREENBERG: I think we have.
DR. IEZZONI: Thank you all, everybody.
[Whereupon, the meeting was recessed at 4:55 p.m.]