[This Transcript is Unedited]
Room 405A, Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201
DR. IEZZONI: Let's decide what we're going to do this afternoon.
DR. NEWACHECK: Can I just interject? I want to offer our thanks to you as the subcommittee chair. You have done an absolutely fabulous job.
DR. IEZZONI: I was telling them that the week after I sent in my resignation letter, I was asked to join a panel on Medicare policy for chronically ill and disabled people at the National Academy of Social Insurance. So next week I have to come down here for a two-day meeting, so I traded one thing for another.
DR. NEWACHECK: You have been a terrific leader. We really do appreciate it.
DR. IEZZONI: I am not leaving until we get this done, so thank you very much, that was very kind of you.
You who know me know that I like to get out of here as soon as possible, but we have some work to do today. It is our last face to face meeting, because Elizabeth won't be around anymore, either.
At the executive committee meeting yesterday, we talked about having -- oh, good, a potential recruit, a new subcommittee member.
DR. MAYS: Not too much arm twisting.
DR. IEZZONI: This is going to be an informal session. Vicki, we have already gone around the table at the meeting in the morning. We can certainly do that now, because there are staff people who have joined us who you don't know. So why don't we give you a chance to sit down, and then we'll go around the table.
Basically, our goal this afternoon is to try to get the ICIDH report in a shape where people like Susan Queen can take it, or whoever else is going to be helping, can take it and move it to a point where it can be submitted to the full committee for their preliminary consideration of February. That is the timetable, which is fairly ambitious. But we want to get this done.
Why don't we go around the room right now? Vicki, you are at a terrible disadvantage, because you are coming into -- what is about to happen is not going to be a huge amount of fun, because we are going to be wordsmithing, talking about recommendations. It is not going to be -- there will be some substantive content too, but it is going to be minimal. So I hope that you won't take this particular meeting as an example of what the population subcommittee will be like.
I heard yesterday for the first time from John that Dan Friedman will be the interim chair of the population subcommittee. Over the next couple of meetings that you guys will be having, you will be mapping out a future course for where you want to be going at least for the next year or so; we won't be too grandiose about it. Probably focusing on disparities in health will be the grand theme that will organize this. So probably the first thing that you will be asked as a subcommittee is to define what you mean by the populations for whom disparities are a concern.
So before I leave, let me just say that people always think of it in racial and ethnic terms, which is important, very important, but let me just put in a plea for thinking about it more broadly, including people from other populations and groups. So that will be my one lingering plea to you guys as I leave.
So why don't we go around the table and introduce ourselves for each other?
(Whereupon, the introductions were performed.)
PARTICIPANT: Is Dan here?
DR. IEZZONI: Dan has not been involved in this ICIDH process, so he may or may not find this a good use of his time, because what we are going to be doing is going through this document.
DR. GREENBERG: Which he may not have even received.
DR. IEZZONI: Which he may not have even received.
DR. GREENFIELD: Which to do that over the phone would put me to sleep.
DR. IEZZONI: So I think actually in deference to Dan and his time being well used that we should call him and say, Dan, --
(Remarks off the record.)
DR. IEZZONI: Let me just first say to Susan, thank you very much, you have done yeoman's work. It looks much better than it did a while ago. I think that it is our job as a subcommittee to help you and to help get to a point where we can try to reach closure on this.
Marjorie, thank you for your report this morning. It was brilliantly timed, extremely clear, and it sounds like it was a very good outcome from our point of view at the Madrid meetings.
DR. GREENFIELD: Do you want me to just take a few minutes to --
DR. IEZZONI: Can I first get a process in place for how this committee wants to --
DR. GREENBERG: Sure. I copied two documents that are in your folder related to it.
DR. IEZZONI: Basically, again, we want to be efficient, we don't want to spend a lot of time doing this, but we need to give guidance to Susan and to whoever other staff members are going to be working on this.
It seems to me that there are two options here, actually, probably three. The first is that we can just sit and give overview comments and then begin to be specific, just overview about the whole thing. The second possibility is to hone in immediately on our recommendations, the ones we think might be the most acute right now, think first about the recommendations and then step back and go through the report page by page. Then the third possibility is to start plugging in and going through the report page by page, and at the very end we'll get to the recommendations.
So do the subcommittee members have any preferences to those three options?
MS. WARD: The recommendations seem to be the most critical piece.
DR. IEZZONI: And they are kind of thin right now, and that is our job. Why don't we start with the recommendations? Marjorie, are you planning to stay here the whole time, or were you planning to go back upstairs?
DR. GREENBERG: They are missing an official designated federal official up there for that subcommittee, except I designated somebody from HCFA. I had to tell them I would probably be up there later.
Two things. Because I just returned, although I went so far as to print out the report, I have not had an opportunity to read it. So I don't know whether -- I'm still interested, but I don't know if it is productive, if you're going to go through the report, for me to participate in that.
I just thought I should maybe tell you a little bit more about what happened and what I think is going on. It might influence your recommendations. But if you would rather wait for that until later -- whatever.
DR. NEWACHECK: Well, I was just going to say, obviously there are some new developments, so what we recommend should reflect those new developments. It seems like we are in a difficult situation, because it is a fluid process now. It sounds like it has tentatively been adopted, we are not sure exactly what it is and how that will actually play out.
DR. GREENBERG: Yes, we had an agreement in principle in the document to tell you what that was, but now we have actually gotten the revised document. I see one thing which I think is a significant problem, or rather a few significant issues and others that are not as significant.
I don't know how much more they are going to be willing to revise it; we are really under a tight time line, though they accepted most of what we proposed. I think it was very clear that there isn't the -- to say let's delay this for another two years, there wasn't the willingness or the resources or the interest in doing that.
The Spanish network, which I didn't mention this morning, but there was a large Spanish network, led by Spain but with quite a number of countries from Latin America -- there were actually 45 countries at this meeting -- they were willing to go with the pre-final as it was. So they came around to see our alternatives perhaps as better, not just a compromise, but maybe even better.
So it was a very productive meeting. It was the most that WHO has ever listened and been willing to negotiate and discuss.
Before I left, we met with Dr. Navatny, Office of International Health. He didn't specifically mention your letter, but he had received a copy of it, and there was clear recognition that there was a problem with this pre-final.
DR. IEZZONI: It sounds like they didn't have much choice. There was a mutiny on hand from some of the biggest centers.
DR. GREENBERG: This is true, although they probably had the numbers to push through the pre-final for this meeting. But then it still had to go to the executive board and the World Health Assembly.
Actually, our first choice was to go back to beta-2 and fix it up, the version that we tested and that you all received reports on. But that was a train that had left the station. That was not clear.
DR. IEZZONI: Marjorie, what I am wondering is, to what extent what you think might happen in the next two weeks before they finalize whatever is going to go to the World Health Assembly next May, whether you think that will affect the substance of our recommendation or whether that will mostly affect our discussion of details, what ICIDH looks like and what the process has been.
It seems to me that it may not affect the overall recommendations that we are going to make, with the exception that we will probably want to say we want to continue testing, continue the revision, we want to have a process in place for updating, et cetera.
So what I am trying to figure out is how much time we should have you spend right now talking about details of the classification, since I don't think that is going to be that productive for us.
DR. GREENBERG: Well, no, I don't think we want to do that. My hope when I left Madrid was that we would -- the North American collaborating center, basically the U.S., we would be able to recommend to our representative on the executive board that although we felt further testing would have to be done at least in the U.S., that there were issues that hadn't been tested in this new version, and even issues that weren't adequately tested in the previous version -- that we could say, we support that it should be endorsed, and go forward with it, even recognizing that -- with the understood revision process.
Again, my concern there is the fact that just like with ICD, once this revision is over, their resources that they have brought to bear, extra resources to work on the classification, are all going to go away for the most part.
DR. IEZZONI: We can observe that in our recommendations. We can observe that as a concern.
DR. GREENBERG: Will there be people there to respond to findings and to make modifications. The big issue for the collaborating centers and certainly for the North American one, is what was felt was the loss of the key concepts of activities being at the person level and participation at the social level, and that they had been turned into ability in the uniform environment and performance in a current environment.
What concerns me in this version that I have seen right now is that yes, they did do the single neutral list, they did take that out of the actual definition of the domains. It was right there in the domains. We knew they wanted capacity and performance, so we said, okay, those should be qualifiers. Then we also asked for the beta-2 definitions to be brought back in, so that activities was at the person level and participation was at the society level, and recognizing there wasn't universal agreement internationally, people could make different subsets. That was agreed to.
But in this latest version, although it includes that, they have defined capacity as being at the individual level and performance being at the societal level. In the words of someone from Australia who said something related to this in the meeting, if they are different, they can't be the same. It was actually a rather profound comment on his part, and it is true.
So if they have made capacity and performance as qualifiers equal to the same definitions as activities and participation --
DR. IEZZONI: You have the same problem.
DR. GREENBERG: -- it doesn't work. I was surprised to see that.
DR. IEZZONI: Marjorie, this is a level of detail that I think -- obviously it is still in a revision process.
DR. GREENBERG: Well, but it is pretty much close to it.
DR. IEZZONI: Are you supposed to be responding to this?
DR. GREENBERG: I am going to respond to this. What I am saying is, I am hopeful still that we will say we can live with this, because they did come a far way. But I have people I am consulting with, and I can't say a hundred percent. I hope we will be able to live with it.
DR. IEZZONI: So basically we will not be in a position today to say that there is a fundamental flaw in some of the logic of this method, and so we really can't support it? Is that what w are suggesting?
DR. NEWACHECK: My concern is that we are talking about sitting down and writing recommendations now about something we haven't even seen. I guess if we stay with our original view that we are not going to make any specific recommendations to do this, but rather we think the concepts are appropriate and the conceptual framework is relevant and useful, without going to the extent of saying that we should adopt ICIDH or whatever, ICFDH, then we are probably okay.
But I feel a little uncomfortable moving this forward without knowing what it is that we are talking about.
DR. GREENBERG: Also, you had talked about maybe recommending a pilot project.
DR. IEZZONI: Right. See, I understand exactly what you are saying, Paul, and I don't think this afternoon we are going to finalize our recommendations. That is the reality of what Marjorie is leading us to.
DR. GREENBERG: Yes. The classification as they plan to send it to the World Health Assembly will be posted on the WHO website on December 15. But I can tell you at that time the extent to which we support it, and I hope it will be --
DR. STARFIELD: I am really confused about terminology. Can I just say that, because I need to ask Marjorie what she means by at the societal level. All of these measures are at the individual level. We are talking about the individual participating in society.
DR. GREENBERG: The individual functioning at the personal level and the individual functioning at the societal level.
DR. STARFIELD: And it is not even at the individual level, it is individual things at the individual level. We're not talking about how the individual functions, we are talking about how the individual functions in these --
DR. GREENBERG: In the variety of domains, yes.
DR. STARFIELD: So the unit of analysis I suppose is the individual, but it is something in the individual.
DR. IEZZONI: Since Patrice is going to a new position, who will be -- I anticipate we're going to need to schedule some conference calls, because we're not going to finalize this today. So who -- Tracy? Lucky you. Could we see if we can have a conference call within about -- Christmas is coming up, but between December 15, that week, we should get one to hear from Marjorie what has happened, and based on what Marjorie tells us, we can focus on some of the more explicit recommendations around ICIDH.
Also, we should schedule another conference call for sometime in January, maybe the end of January, to be able to review another draft. If we do want to bring this in front of the full committee for the February meeting, which is February 21-22, so it is the third week in February, we are going to have to send it out to the full committee at least a couple of weeks beforehand, so we should try to have a conference call scheduled for the end of January.
Paul, I really think that some of the recommendations we have to do go back to endorsing the core data element, general status is important, asking, reminding -- we can't have a recommendation phrased exactly this way, but this is what I want to say. Subcommittee on Standards, remember the ICIDH. We have to remind the people who deal with code sets that this is a code set that they should be looking at.
One of the frustrating things for me this morning, Marjorie, was, after your presentation there were a number of questions that suggested that nobody had ever heard of this concept before on our committee, and we have been talking about it now for almost a year. So I would like one of our recommendations to be explicitly that this DSMO or maintenance organizations, that they should look at this as one of the code sets that they should review.
DR. GREENBERG: But they don't want to implement 10 CM, so you can imagine --
DR. IEZZONI: I just think people need to get functional status on their radar screen. This is a classification for functional status. Our subcommittee on standards needs to get it on their radar screen. We obviously can't have a recommendation to ourselves in a report to the Secretary.
DR. GREENBERG: You can say what you intend to do as a committee. It is from the committee.
DR. IEZZONI: So we are going to have to get Simon and that subcommittee to buy into our saying that in coming up with n set standards for medical records and whatever else they are going to be doing for the computerized medical record, that this has to be a concept. They can reject it after looking at it or if they don't like it, they can take parts of it, integrate about the mental health part, maybe they could take parts of it. But we want them to at least look at it.
So it is these level of recommendations, and then we can get more specific about the system itself. The pilot testing has been a start, but it hasn't been adequate. We are still concerned about having process in place to update the method, those more detailed things about ICIDH itself, but trying to get on the radar screen that functional status is important I think one of the very first recommendations.
DR. NEWACHECK: I agree with that entirely. In fact, I would make it even more general. Our first recommendation just reiterates the subcommittee's view of this report on the importance of functional status in administrative data, and then go to the more specific, about how the code groups need to pay attention to this, and then go to ICIDH.
DR. IEZZONI: Absolutely, that is a good way to phrase it.
DR. COLTIN: I have a question about that, in terms of what is the best way to approach it. There is a field that is reserved on the 837 for functional status. I have on idea what the format is for that field and whether it lends itself to accommodating ICIDH.
I think that when --
DR. IEZZONI: If it doesn't, that would be an interesting idea.
DR. COLTIN: This is where I'm going, so let me finish. There are a bunch of things that occurred to me. We heard today about gaps, what is not on the paper form that is in the implementation guide. There isn't a field on the paper form for functional status, but nobody identified that, looking at what is on the 837 and what is missing from the paper form. I didn't see anybody say functional status is missing. So there is a whole litany of these kinds of issues that are being examined by groups, but the whole issue of functional status is being ignored.
So I think the groups really need to look at that in terms of it being an identified gap on the paper forms. Two, in terms of the electronic version, that they look to see what that field actually looks like now and what could it accommodate, how flexible is it, and what would it take to structure that field in a way that it could accommodate an ICIDH code.
DR. STARFIELD: My comment is related to that. When we were originally in the core data elements thinking about this, we were thinking of one field in enrollment data, not in encounter data. Yet, this specification is very comparable to the ICD. You can code multiple things, right?
DR. COLTIN: But also, functional status changes over time, and enrollment records only change when you change your insurance coverage. So I think there is a good argument with this particular classification system that it would occur in the context of an encounter transaction, not necessarily being a required field on every encounter, but that it could be an optional field, and you would record it when appropriate. For some patients, it might be more appropriate to do it more frequently and others less frequently.
DR. IEZZONI: Or some provider types like the OT's, as we heard in testimony, really love this system. It is very appropriate to occupational therapy to be coding.
DR. COLTIN: I don't think we're in a position, I don't think we know enough to be able to prescribe how frequently it ought to be recorded. Even if patients made a visit every month, would you want it recorded every month? So I think we have to leave that.
DR. STARFIELD: That has to go in guidelines, and we are years away from guidelines, I would think.
DR. GREENBERG: For its use. There would be coding guidelines, but guidelines for its use, yes.
DR. IEZZONI: We just need to get this on the radar screen of the relevant organizations, so the global thing as Paul phrased it needs to be on the radar screen of everybody. Then ANSE, or who is it that does the 837 form?
DR. GREENBERG: X-12, now it is the DSMOs. It is the NUBC, NUCC, HL-7, X-12 and NCPDP.
(Simultaneous discussion.)
DR. COLTIN: I think the patients medical records group also needs to look at this and say, how would electronic medical records system facilitate the collection of this.
DR. IEZZONI: So we basically have to say that we as a committee, since this will be a committee report, that the patient medical record will be considering this as a code set. So Simon again will have to buy into this.
DR. GREENBERG: Yes. The only thing is, if you felt that some type of demonstration or pilot project might be valuable, that could be helpful to at least -- it would then be there as a recommendation, and maybe some resources might be brought to bear in the Department to address that. It could help in that regard, if you felt that was useful.
DR. IEZZONI: Let me just lay my cards on the table about this. Nobody is going to agree to use this system until it has had a demonstration project on what it is like to use it.
DR. GREENBERG: Oh, sure, several maybe.
DR. IEZZONI: Several. You heard Kathleen Frawley and her comment on it this morning from back in the early '90s. So absolutely, I think a demonstration project as well as initial -- more comprehensive studies of inter-rater reliability and the feasibility issues, the cost of doing this kind of thing, and the question about whether the information is in the medical record.
I agree with Kathleen's point; physicians I can say do not document functional status all that well. In fact, poor Susan Queen can tell us, she had a terrible time. I kept saying, Susan, find a doctor to talk to us about this system, and she couldn't. Even the American College of Physical Medicine and Rehabilitation gave some verbal, but they hadn't known about it before you called them about it.
So I think a demonstration -- like the American Psychological Association seems to have heard of it, but doctors out there, even in psychiatry and physical medicine, who you would think this would be really important for, don't have a clue about it.
So I think demonstration projects, awareness, meetings with professional organizations. We know very clearly from the presentation in July, I think it was, that the PT people do not like this.
DR. GREENBERG: Some do, some don't.
DR. IEZZONI: The guy from the American Physical Therapy Association --
DR. GREENBERG: But the Minnesota group was embracing it.
DR. IEZZONI: But the basic point is that we need to get more feedback and input from relevant provider groups.
MS. WARD: So we can counter that one person's view on the record.
DR. IEZZONI: Yes, that would be good, because in here it isn't really countered.
DR. GREENBERG: I think the person from Minnesota --
DR. KENNEDY: Right, and there were other PTs and certainly OTs. Gretchen Swanson is a PT.
DR. GREENBERG: Yes, Gretchen had the unfortunate thing of being on the second day of that January meeting, when we were snowed out, so we never heard from her. We just had written testimony from her.
DR. KENNEDY: One of the issues with medical doctors in general in the AMA is that they have their guides to the evaluation of permanent impairments, which they have just recently redone. That is used for worker evaluation, which is very different and it is a state system, and it is a whole different approach. It is not a taxonomy in the way we think of ICIDH, but it is in some respects understandable, given that they have their own publication, that they are less familiar with ICIDH, because it is a very different standard.
DR. IEZZONI: One of the things that we need to emphasize throughout this report is that this is not a classification solely about people with disabilities. So I understand what the AMA does on disability evaluations for workmen's comp and so on, but -- so we need to emphasize that in this report.
So we have been sputtering out some recommendations here.
DR. COLTIN: I recall a conversation at one point, we had talked about asking the subcommittee on privacy and confidentiality to take a look at this.
DR. IEZZONI: They did. They never officially reported back to us.
DR. COLTIN: Right, I was going to say, because there is nothing -- that issue isn't discussed. It is a threat to credibility potentially in terms of how protected the information is.
DR. IEZZONI: Well, it was funny, because they had a discussion about this in one of their morning meetings, the second day of the two-day meetings, in the morning meeting they had a discussion. Kathleen never reported back formally to me, but I heard via Marjorie that basically, they said this is not that different from diagnostic information. It is probably not as scary as HIV information getting out there.
So their feeling was that it was an issue that needed the same kind of privacy protections as other clinical information. But we should at least state in the report that the privacy subcommittee did look at this and felt that it needed the same privacy protections.
DR. COLTIN: But doesn't it raise some additional issues? One of the reasons we are talking about wanting to look at it -- we talked about the purposes and how might it be used, one of the ways to use it was to look at it for outcomes or to trend outcomes over time.
To the extent that it becomes available for purposes that the patient might find counter to their desired end, let's say, eligibility for some sort of a program or assistance or whatever, to show improvement, then that is a threat to the credibility of the information that is being collected, because some of it does rely on the patient telling you what they can do in their home environment or whether they are able to interact with other people, you know what I mean? It is not all stuff that is observed by the clinicians.
So it seemed to me that it did raise some issues that were somewhat different from diagnoses.
DR. IEZZONI: I hear what you are saying. You are saying that if somebody wants to get their SSDI, they have to continue to say that they are able to perform any gainful employment, which is a threat to credibility of any information, as the Social Security Administration has tried to look at for years.
I think that we could raise the issue that if this information is going to be used for purposes such as volunteering quality monitoring, tracking outcomes for individuals that could potentially be traced back to individuals, that privacy issues need to be revisited -- thus far all we have done is look briefly at privacy issues, but depending on future uses, privacy considerations need to be looked at again, especially around the mental health issues. We have always felt that mental health might have special issues around privacy.
DR. HARDING: Being on the privacy committee, we would be delighted to look at that, and we can do so at our next meeting. That is a very important issue.
DR. IEZZONI: Were you there at the time it was discussed?
DR. HARDING: I was not there, but I read the minutes of that.
DR. IEZZONI: I didn't even see the minutes.
DR. HARDING: I think we didn't get through it. This is a very interesting issue.
DR. STARFIELD: We got this appendix from the meeting. Ed handed out this appendix which has got stuff on it. It's got domains and health related domains. I am having trouble even in this report trying to distinguish functional status from health, because sometimes health is used and sometimes functional status is used.
(Simultaneous discussion.)
DR. GREENBERG: Actually, the pre-final version took almost every place that it said functional status, they changed it to health. A lot of this is driven by the three resolutions and politics. I think the people who were working on it admit that there is politics at WHO and what they are trying to achieve with the resolutions, et cetera.
I think we actually got -- I haven't gone through it thoroughly enough to see where, but we got functional status back more into the classification. We certainly got it into the title. Also, they said they were happy to take back the umbrella term of functioning.
So I think some of that is coming back with this new version, but equating this with health -- and we asked them, what about ICIDH; it is a problem that has been identified.
DR. IEZZONI: Let me say that asking Susan to struggle with this isn't really fair. I sent Susan some text electronically that you and Paul appropriately said, this sounds like adults, it doesn't sound like kids. But I think that it is going to be incumbent upon us maybe to -- some plagiarism I think is a really great thing. I am sure that all of you, Paul and Barbara, I'm sure that you have written stuff that you could just self plagiarize that would be on this score, and just send some electronic files to Susan, as well as when we start to get into the very specific editing, pointing out places where we think we really need to clarify it, and exactly how we need to do that.
I think that this is not necessarily clear, as Marjorie is suggesting. Even the leading minds in the world are having arguments and flipping back and forth. I think that this might be one of those situations where we just have to agree to live with some uncertainty.
DR. GREENBERG: The health/health-related also is driven by some econometric and other considerations, because that came in late. Actually, they wanted to call it health/non-health, and we just objected very strongly to that, so it became health/health-related.
DR. STARFIELD: One of the recommendations we could make is to distinguish functional status from health. I think we could do that.
DR. GREENBERG: What?
DR. STARFIELD: To distinguish at least in our document functional status from health, and recommend that health not be used when we mean functional status.
DR. GREENBERG: I certainly wouldn't agree with that.
DR. NEWACHECK: We also need to define functional status much earlier, because it doesn't come to about page four or five.
DR. IEZZONI: This is stuff that we have to do. It is not fair to Susan to ask her to do it. For Paul and Barbara I think it is going to be really important.
DR. KENNEDY: I think the easiest way to keep the framework in mind is, if you think of turf battles, and there are agencies, thank heavens, not so much in the United States, where if you call something functional status and you are talking about work, we understand here that we are relating to performance of work activities because of the person's health condition, if you will.
DR. STARFIELD: Not necessarily, but the first part of what you said is. It doesn't necessarily have to be related to a condition, because sometimes impairments don't come from a condition.
DR. KENNEDY: In this case, it would be some situation of health. It may not reach a diagnostic threshold. But it wouldn't be just poverty, or it wouldn't be lack of education. That is how ICIDH-2 at least is intended to be used. To be assessed in the health arena, if you will, somehow it would fall under --
DR. STARFIELD: But social functioning is much more than health, and that is what you are talking about.
DR. KENNEDY: It is, but the ICIDH would only reflect where the diminution in functioning, less than would be expected, would be somehow health related.
DR. IEZZONI: I think, Barbara, that you are going to have to write something for all of us to react to. I think that my concern is that if you only talk about functional status, that people are going to hear disability in their minds, because they are not going to think that people who are walking around and physically doing quote everything a normal person is supposed to be doing, they are not going to think of them as having a functional status. They are only going to think of functional status as being some aberrancy.
The concept of health has a lot more positive feeling to it. When you talk about health, you don't automatically assume un-health, but when you talk about function -- so I think we are going to have to make sure that we as a committee agree on the phrasing, but we have to have some words to react to.
DR. STARFIELD: That's fine. Dan and I as part of this model building have done some work with definitions for health. I actually put that together for a journal, so I can share it.
DR. IEZZONI: I think that what we could say in the report is that the committee itself has difficulty with these concepts, because people do have different views and different perspectives on that. This is how we are using these terms here, and this is how we are using them here. But other entities might use them in different ways.
I recently reviewed an article for a journal that made the following statement that federal agencies have 37 different definitions of disability.
DR. STARFIELD: I thought it was more than that.
DR. IEZZONI: Maybe it was 73. But anyway, the point is that there are a lot of different definitions of disability that federal programs are making decisions based upon. I wrote back and said the author needed to give us some examples of what those are, because there wasn't any table that said this agency defines it that way.
If we are having that problem for disability, which is a very regulated concept in the federal lexicon around social security and so on, think about what health and functional status would do, in terms of definitions.
We have been spouting out recommendations, Susan. I hope you have been hearing them that way. You haven't? Has everybody been hearing the recommendations that have been coming up?
DR. STARFIELD: Are we able to recap? It would be helpful to you and it certainly would be helpful to us.
DR. QUEEN: Yes, it would be, because that way you all can correct what I have been writing. It was at least mentioned as an initial recommendation to reiterate the importance of functional status as a core data element. The subcommittee would want to make a recommendation that the DSMOs should review the ICIDH as a code set. The standards committee needs to review the ICIDH as a code. I don't know if these are all a separate part of the same recommendation or separate entities.
I didn't know if this was a recommendation that you mentioned, Kathy, about the gap on paper forms for fields for functional status and how these fields could accommodate the ICIDH, whether it is paper or electronic.
A demonstration project is required to look at a variety of issues including cost, inter-rater reliability, et cetera, the possibility of awareness meetings at professional associations.
Then you talked about a couple of things, emphasizing throughout the report -- I didn't take that as a recommendation, except for in the report itself. Then this last issue of distinguishing between health and functional status in definitional terms. Again, I took that as more as not a recommendation.
DR. STARFIELD: I actually think it is a recommendation that we make in the report.
DR. IEZZONI: If we make a recommendation like that, Barbara, we have to say why this is a valuable thing to do, why it is important to make that specific distinction.
DR. GREENBERG: What was the recommendation?
DR. IEZZONI: Between health and functional status. Other recommendations?
DR. COLTIN: I just want to clarify one of them, which was to ask the subcommittee on standards and security to look at ICIDH as a code set. I would say more specifically as a code set for the functional status field in the 837, and to determine whether that field can accommodate ICIDH. So as well as looking at its utility as a code set, can it accommodate it.
DR. IEZZONI: Again, we can't make recommendations to our own committee, so we are going to have to phrase that particular recommendation as more a statement that the NCVHS during its review of code sets will consider this and make future recommendations about it.
DR. COLTIN: Then the other one was the patient medical record work group.
DR. STARFIELD: I think that is part of the subcommittee now.
DR. COLTIN: Okay, it is part of the subcommittee. So then the second field is to consider the extent to which standards for patient medical records could accommodate the use of ICIDH and clinical practice.
DR. NEWACHECK: Are we talking about ICIDH at this point or are we talking about more -- or whatever it is. Are we talking about that, or are we talking about more generic functional status indicator? I'm just thinking about the order of these things.
The first recommendation is that we need to pay attention to functional status in general for administrative records, and the second one has to do with the various groups that are doing code set work need to focus on ICIDH? Because if it is that, then it should probably come later after we have our other recommendations about ICIDH. Or is it functional status?
DR. IEZZONI: Are there any other code sets for functional status? There aren't.
DR. STARFIELD: There are HIS questions on functional status.
DR. IEZZONI: But that is not code sets.
DR. STARFIELD: There is not on comprehensive classification, I don't think there is anything else. How many codes are there in -- there are about 20,000 codes in ICD. How many are there in ICIDH?
DR. GREENBERG: I think there is 300 and some. There is a short version and a long version. It is something like 10,9999.
DR. COLTIN: So it is a loop. I think you can put in multiple values, but each value would have a certain number of characters.
DR. GREENBERG: We need to look into that field, because I'm not exactly sure, either. Is it on the institution or just the professional, do you know?
DR. COLTIN: I don't know.
DR. IEZZONI: Back to Paul's question though, Paul, this project focused on ICIDH. We didn't really look at anything else.
DR. NEWACHECK: In our first meeting we heard different ideas like ADL's. I guess what is missing is, if we are going to say in the first recommendation that we need to pay attention to functional status as part of administrative records, we don't want to go immediately then to say that various different subgroups ought to be focused on looking at ICIDH, but we need to have a broader recommendation in between that says that of the various measures of functional status, the committee feels that the ICIDH offers the most promise. Then we go to the specifics about how the various committees need to --
DR. COLTIN: I agree. That is a nice lead-in even in terms of the organization of the report. I just had a couple of suggestions for how some of the sections would be retitled. The text is fine, but it doesn't work you logically through those three steps on functional status is important, two, there are a number of options, but this appears to be one that is most workable, and three, how workable is this one, what are the issues.
DR. IEZZONI: The organization though has to have a place for describing this, so it gets a little bit bulkier than we would like it to be.
Let's hold off on our global recommendations for the report for a second, which is what I want to go to next.
MS. WARD: What happened to the conversation about the privacy committee? I know we're not going to say committee A recommends committee B do something, but I think we have set the expectation that there will be a statement in there from the privacy committee.
DR. COLTIN: Would that be a recommendation or just --
DR. IEZZONI: I think a recommendation is that as future uses are being looked at for these data, that privacy concerns are paramount, because some of these recommendations could disadvantage people if their data were to become public or known by certain entities, or however we want to phrase it.
DR. COLTIN: And the data would be compromised. The alternative is that the person gives the data, and then what is the point of recording it at all, if it is not going to be valuable.
DR. IEZZONI: My concern is that physicians in their infinite wisdom will always impose their own judgment on what is going on with a patient, in terms of their functioning, and there is ample literature of physicians doing that and not coming up with very close to the mark answers.
MS. WARD: Certainly in terms of the mental health issues, there is lots of literature that also says that people don't reveal that, if they feel their records are at risk.
DR. IEZZONI: If it is a stigmatized condition.
DR. STARFIELD: I have marked up my version and I would be delighted to give it to Susan if that would be helpful, but I would like it to be xeroxed.
DR. IEZZONI: We can do that. Why don't we do that right now, because we still have a few more minutes that I would like to spend on recommendations.
I think that we should in our recommendations note that we don't think that this is ready for prime time yet, though, to be implemented fully here. That is when we can start getting into the need for a demonstration project.
But I think that we should also respond to Marjorie's statement that the WHO resources are going to go away. So if our country has an interest in implementing this, that resources will have to be spent. Remember how ICD-9 was customized for U.S. use. If the WHO isn't going to be able to take it to the next step because they don't have the resources, we are going to need to make the point that resources might be needed to put this into shape that we could use here. Is that a true statement?
DR. GREENBERG: I don't know about a CM. I think WHO's intent is to support this. They intend to support this and ICD as a public good, as they put it, et cetera. Meanwhile they have put no resources into it. They have had resources working on the classification. They have had extra-budgetary resources, but they don't have -- right now, as to actual positions that are supported by the WHO budget, as opposed to extra-budgetary resources. They have one person for ICD. I don't think they have any position for ICIDH. They have one person who is over ICD and ICIDH and also working on surveys, and he has a lot of things to do.
DR. IEZZONI: Then maybe what we should do in the recommendation is just observe that WHO may not have the resources to -- how can we phrase this to avoid being --
DR. GREENBERG: Well, there are two issues. One is, I think it is essential that WHO have the resources to at least --
DR. IEZZONI: But can we make a recommendation to the Secretary that WHO needs to have resources?
(Simultaneous discussion.)
MS. WARD: We did that with the population --
DR. IEZZONI: Yes, but that was really different. We were saying give to these people, we weren't saying give to some organization.
(Simultaneous discussion.)
DR. GREENBERG: They clearly need some infrastructure there in order to -- if you are going to want to over time revise it and modify it based on findings internationally, that is a question of whether in the U.S. you might come up with some adaptation. But I think we are not anywhere close to talking about that.
DR. IEZZONI: So how would we phrase this particular recommendation, about getting resources for WHO to develop the infrastructure to keep this?
MS. WARD: Just the way you did it, to encourage the Secretary to encourage through the international --
DR. GREENBERG: We have a U.S. representative on the executive board. The executive board is certainly advisory to the organization on how they spend their resources.
DR. KENNEDY: We can make a recommendation for the development of resources, and it can be money and stuff and whatever for further activities involving the --
DR. IEZZONI: But if it gets into international activities, we have already heard that the Spanish language countries, Spain and so on, have a very active group that is working on this, and we saw that in the draft. Would we be supporting other countries in terms of their development?
DR. NEWACHECK: I think that gets us into potential trouble politically and otherwise. I think we can make the general recommendation that more resources need to be put into research and demonstration around the ICIDH, without saying going to Geneva or to Spain or whatever. That would probably be appropriate.
DR. GREENBERG: Yes, I think the difference between Spain and Geneva is quite different. Actually, they have run out of resources too, apparently. The Spanish network certainly could be doing more testing or whatever.
It is a problem frankly with ICD and ICIDH. You have these international classifications, you are trying to promote international comparability, and they do not have the infrastructure at WHO to support it. Am I wrong?
DR. STARFIELD: Not only that; their whole effort at global health is in a whole other direction, with them putting a fair amount of resources into that. It is really different. This is a clinical system that they are supporting the worldwide standardization of. Their thinking isn't really there anymore. It used to be with the ICIDH.
DR. GREENBERG: ICD and ICIDH they see as the core classifications for their summary health measures, et cetera, but there is no -- they are not supporting the infrastructure.
DR. MAYS: If the recommendation really is around the pilot work, will not an infrastructure evolve to be able to do that? My guess is that if it is going to be like pilot work, that you are going to -- it would be a contract or there would be researchers, there would be a group of people that would go out and do that.
(Simultaneous discussion.)
DR. MAYS: We give money sometimes across the board for international research for us to do collaboratively with other groups. We do it for mental health, so there is a way to back into it.
DR. GREENBERG: Yes, we work with Canada. I don't think we want to do this with the other collaborating centers. We will work with Canada, we will work with the U.K., Australia. But that is different than WHO having the infrastructure just to maintain classification and to update it on a regular basis.
DR. MAYS: Right, this is different. I am actually talking about work in which you get the pilot work off the ground. Then I think you have a chance of saying what happens in terms of funding an infrastructure, because there is data that clearly will indicate more of a need.
DR. KENNEDY: How is the ICD work currently funded?
DR. GREENBERG: You mean at WHO?
DR. KENNEDY: Yes.
DR. GREENBERG: There is one position there. A lot of the work is currently being done by the collaborating centers, as I described this morning. But individual collaborating centers can't -- we play the role of coordinating as well, but we can't actually implement these things for WHO.
DR. IEZZONI: Let me just clarify, Vicki, when I talk about a demonstration project, I am talking about, if you go to medical records in the United States, is the information there to collect the ICIDH codes. I think it might be hard to generalize what happens in our country to other countries, so it is a different question than a question about maintaining the code and classification system, which is what the WHO people want to do.
However, Donna Pickett in our country maintains and updates every year the CM. So why can't we have something similar to what Donna Pickett -- who is a wonderful person, hopefully you will get to meet her at the next meeting as she comes to talk to you about 10 CM -- why can't we propose that there be something similar to what Donna Pickett is doing here in the United States? Or to consider -- our recommendation would be that we realize that an infrastructure is going to have to be put in place to maintain the classification system.
DR. GREENBERG: Both at the international and the national level.
DR. IEZZONI: Both at the international and national levels, and maybe just leave it at that without saying how it should be done. But hope that just by stating that it needs to be done that it would raise the recognition that it needs to be done.
MS. WARD: I think that is the minimum that has to be there. If Marjorie could come up with something that is politically acceptable for the Secretary to also say, then let her see if she can come up with it.
DR. IEZZONI: I think that that is an accurate statement.
DR. GREENBERG: I think it is important to at least have that statement. When you said the pilot, in past discussions I thought you were talking about two things. One is field testing, to go to actual records and see what could be coded. There is some work done with live records, but not that much. Our collaborating centers didn't do any.
But the other was the type of pilot that I know Don Lahler has spoken to you about in the past, and that he is very interested in promoting, not obviously the whole classification but maybe the activities limitations would actually be a pilot project, to see if that information could be collected in a managed care organization or some group that would be willing to pilot this and see whether the information can easily be obtained, whether it can be easily coded, that type of thing.
DR. IEZZONI: I think what we can say is that a pilot test needs to be done to look at feasibility, reliability, cost, practicality, whether the information is in the medical record, a bunch of different things, and we don't need to design that pilot stuff.
DR. GREENBERG: No, but it should be more than whether it is in the medical record, but going beyond what would it take to get it into the medical record, or to get it collected.
DR. KENNEDY: As Marjorie is saying, get it into the medical record. Another thing is to do a feasibility study for using it, but you would need training in how to do it even before. There is no sense doing reliability on something as you were saying earlier so far into so many people.
DR. IEZZONI: That is why I wanted the recommendation for Susan as working with professional organizations to get them familiar with us and to get them motivated and interested, and then do more training.
DR. GREENBERG: APA actually is starting with the psychologists. Their intent is to work with a whole range of medical specialties, health related, to see how successful they are. But that is certainly their intent, to go beyond psychologists.
DR. KENNEDY: And beyond the U.S.
DR. IEZZONI: I think I'm stalling a little, because I know that Barbara doesn't have her copy and Paul doesn't have her copy, and I want to begin going through this.
DR. KENNEDY: I can stall for a second. Somebody mentioned the Spanish network. The Spanish network started under the auspices of the mental health task force. It has been so successful that we are now sister organizations, if you will.
So there was some U.S. seed money that went into the formulation of that network. The reason that we thought it was a good thing to do, in spite of the fact that there was minimum -- although there was Spanish language culture input from the U.S., we figured that the Spanish consensus version that would arise, I'll take a moment and explain that in a second, would be applicable in the U.S., and that the Spanish language is the second largest language in the U.S.
The idea is that Spanish countries and Spanish-speaking countries all have a different version of Spanish. So rather than have 18 or 20 different Spanish versions of the classification, or one that everyone would eschew, their task was to develop a consensus version. For every chapter there was a group leader in a different country who developed the translation of that chapter and circulated it to the others.
At any rate, they have come up with this version where they can actually substitute phrases, depending on which language. We had input from Fresno. We had originally more input from Puerto Rico, but those folks wanted to work on instrument development.
So there is now this consensus Spanish version, and I think there has been a really nice cohesive group. They have also incorporated a second Spanish network into the first one. Those were a group of data users that had originally been supported by PAHO.
The group has been so successful that in the meeting in Madrid, they had members of parliament from different countries such as Argentina representing their country in Madrid. So the little teeny bit of money that we put forward gave us not only a product that will be useful in the U.S., but has developed a network that required each country to develop its own internal network, and it really got very high powered people involved.
So we came out with something in the U.S. we needed, and we gained more than the amount of money that we put in. Other good things happened elsewhere, but there is something to be said for thinking internationally and getting back more than selfishly you had even hoped. We have a version now that is good throughout the U.S., with Dominicans, with the Puerto Rican version and the Mexican version and other Spanish languages in the U.S.
DR. STARFIELD: Are you talking about ICIDH-2?
DR. IEZZONI: That's great. Patrice, you're back. Final call for any recommendations. Any more recommendations? We can keep the floor open for recommendations as we are going through.
Why don't we as the first thing -- let's look at the outline, because before going into global overall things, let's look at this outline, which is the first two pages of what you've got.
Can I just say, I think we need to come up with another word other than study, because I don't think this is really a study. I think this was a review or -- is there another word, effort? But it wasn't a study. It was an exploration, an examination, but that doesn't really work. But we are going to get in trouble if we use the word study. Somebody came up to me after Marjorie's presentation and said, did you study the concordance between ICIDH and the nursing classification system, and I was like, no, no, no.
DR. STARFIELD: Is analysis any better? It is an analysis.
(Simultaneous discussion.)
DR. IEZZONI: Or assessment. Let's use assessment, because it is great and vague.
So purpose of -- we could just say purpose of report here. So let's look at the overall organization, because I think that the organization -- there is some stuff that is a little too long in what was operationalized in here that I think we might want to change, but do people feel okay about the overall organization?
DR. NEWACHECK: I liked Kathy's comment earlier that we should try to make the report follow the logic of the recommendations, going from the very broad to the specific.
DR. IEZZONI: So how do we change this?
DR. NEWACHECK: I think we can start out with something about the importance of functional status in the administrative records, and the value of it, which we have, I think. Then we go from there to say that the committee heard much testimony about the various approaches to measuring functional status, and decided based on that testimony that the ICIDH was the most promising, and that is where we went. The rest of the report would focus on the various aspects of the ICIDH.
DR. IEZZONI: So do people feel they can get rid of two?
DR. NEWACHECK: Get rid of that? No, no. I think what is probably needed is more of an integrated way of -- it is probably editing, to smooth the transition.
DR. IEZZONI: And to take some things that seem a little longer than they need to be.
DR. STARFIELD: I think the one potential problem that I saw with this is that it does confuse health with functional status.
DR. IEZZONI: But that is your job.
(Simultaneous discussion.)
DR. NEWACHECK: We get that ICIDH on page two. I think there needs to be more before we get there. We are really talking about making a great case for why functional status is important. Then the discussion of the various measures and then the selection of ICIDH. It seems like we need to have that before we go into ICIDH.
DR. IEZZONI: I think it is a matter of, there is too much in this first part about ICIDH. The first section has to mention ICIDH, because it is an introduction. It should only be two pages; I think it is four or five pages. So it just needs to be short. I think it is editorial.
MS. WARD: So Paul, you don't feel there has to be an actual change in the numbers, Roman numerals, to get to your point?
DR. NEWACHECK: Yes. I also feel like this is a stylistic issue, but this is still an outline. I think we need to move to more of a narrative style. So I'm not sure that we want to have all these subsections and all that. I think we want to make it more general and have it flow a little more smoothly. To me it feels like it is compartmentalized too much. There is a little section here, followed by another section here without the transitions and the smoothing.
Susan, I think you did a great job of getting the pieces there, but now we've got to integrate the pieces into a smooth process that will make it into a nice narrative.
DR. IEZZONI: Shouldn't we spend some time now giving some overview comments about the text, rather than going through and doing fine detail? It is not clear to me that doing a lot of fine detailed editing at this point is really a good thing to do, since Barbara still has to do her magic on the functional and health.
So maybe what we should do at this point is go around the room and have each person give Susan their specific overview comments, and then maybe we can see where we are at that point, and then get into a few more details.
DR. NEWACHECK: Can I ask to go first, because I have to leave in five minutes?
DR. IEZZONI: Of course.
DR. NEWACHECK: My first comment is that I really did like Kathy's way of thinking about this, organizing it around the recommendations. So the recommendations feel like they are a natural extension of the report body itself, so we talked about that already.
I also feel that right now, it is a little bit choppy because it is more of an outline style, and we obviously need to, as we go into the next version, smooth the sections with transitions. That is again editorial.
I do think as Susan pointed out in her cover e-mail to us that there is a fair amount of overlap that we need to pull out of this. We probably could take out I would say five to 10 pages fairly easily in that area. Again, this is the first shot at putting it all together, and now it is just really refining that at this point.
I felt one of the areas where there was perhaps more detail than we needed was the description of the testimony. I think what would be more valuable in the text and the narrative report would be culling out some of the cross-cutting themes that came out of the testimony, reporting them particularly as they support our recommendations. Then having the testimony itself, the descriptions that Susan has already done maybe as an appendix, so that people can go back and forth if they want to see more detail on what we heard in the testimony. I think it is good, but it is probably more detail than we need for a narrative report like this.
Then in the recommendations section, we talked about that already, but I do think we need a preamble to the actual recommendations. We have done this before in our other reports, where there is about a page or so that summarizes again what the committee did in terms of the process of the study and how it came to these conclusions and recommendations, so that the recommendations just don't pop right out at us.
So most of those are just editorial comments, but I think we have all the basic pieces here. It is more just smoothing and cutting and pasting kinds of things at this point. So those are my comments.
DR. QUEEN: I need a lot of help with that.
DR. IEZZONI: Susan, you and Marjorie and I should probably talk after -- Marjorie, if you can hang around so the three of us can talk. I think that Susan has been given a job to do that she has done a great first cut, but at this point, I think it is going to be really important for Barbara to contribute language, and Paul, if you have written anything that you think could add substantively to the description.
DR. NEWACHECK: I added some little bits and pieces.
DR. IEZZONI: That would be great.
(Remarks off the record.)
DR. IEZZONI: Thank you very much for all your comments, I appreciate it. Kathy, do you have some overall comments?
DR. COLTIN: Some of them are very similar to what Paul was saying, because I think he captured most of them. But for me, I found most of what I was interested in seeing was in here somewhere, but not where I expected to find it. So there was a lot of reorganization that was possible just with cutting and pasting, that I think would help me to follow an argument and the way you are building an argument.
It seemed to me that the first thing I would want to know is why are we interested in functional status at all, even before you get into core data elements. It is simply, why pay attention to it, why is it an important thing for us to look at. That is in here but not up front. To me, that is the first thing.
Then we say, recognizing its importance, the history is, we recommended it be included in the core data sets, and what are those core data elements. You have to give a little bit of history about that.
Then along came HIPAA and an opportunity to look at how it might be folded into administrative transactions. There was a little bit about that on page three, but then there is a whole lot more on page 17 about standard code sets for administrative transactions. I think those should be put together. You are building almost the chronology and the way that we examined the issues.
So then we said, okay, what is the best measure of functional status, or the best candidates that are out there for inclusion into an administrative transaction, because we have built that point. There is a discussion in here. That is where I would also build in the testimony, because we heard a lot about different functional status measures that might or might not work, and had various pros and cons. So that is way in the back, and it seems to me it would come logically at the point where you are saying, we all recognize it is important, we have an opportunity to consider capturing it as part of an administrative transaction; what are the candidates that are out there, and what is their viability.
DR. IEZZONI: The problem is that we didn't look at the candidates that are out there systematically. We got Bob Kane in to give us an overview, and Margaret Styman came in and talked about the FIM.
DR. COLTIN: And we heard about the SF-36.
DR. IEZZONI: No, not from an SF-36 person. We did not do -- the reason I am a little sensitive to this is because that was what we had initially intended to do, and that is what the community out there, Jerry and Paul Plazecs, the inter-agency disability statistics group that I went on, that is what they expected us to do, is to do a comprehensive assessment of all the different functional status measures, and we really didn't do that.
So I think what we would need to say is that we selectively looked at a number of different options, but that the study -- this is not a study -- this assessment, we did not have the resources to be able to look broadly at everything, but here are some examples.
DR. COLTIN: Okay, fair enough, do it that way, and then among the examples that we explored, the most promising appeared to be the ICIDH, what is the ICIDH.
(Simultaneous discussion.)
DR. IEZZONI: The issue is that the ICIDH is a classification. The other things are assessment tools. So that is the big huge message that needs to be put up there in bright red flashing lights, from the very start, because that is the fundamental divide here.
DR. COLTIN: I picked that up actually when -- there was a point here where you talked about, regardless of the assessment tool or measurement instrument that might be used, you could use ICIDH, which suggested -- and this was on page two, suggested that there was an option for more than one. But if we were going to make a recommendation that the data element on the HIPAA standard transaction be used for ICIDH, that would preclude a different one, wouldn't it?
DR. GREENBERG: You can always add elements to the 837, too. It is potentially a plus that there is a placeholder there.
DR. COLTIN: Either that, or you have to argue for why you believe a classification is better than an assessment tool.
DR. GREENBERG: I think more of a researcher analysis needs to be done as to how various assessment tools that are being used now can be coded in ICIDH.
DR. IEZZONI: That is another recommendation, absolutely, I completely agree. And the OASIS and NDS. We heard that ASPE was going to let a contract to do this, right, Marjorie? But then they didn't do it?
DR. GREENBERG: What happened with that?
DR. KENNEDY: John can probably do it more formally, but we were unable to get between technical budget an application that was doable.
DR. IEZZONI: That needs to happen. That is a recommendation.
DR. STARFIELD: I'm thinking of the section you wrote on the different instruments. That is where you want to point out that ADL and the SF-37 are different than the ICD concept. That has to be made clear.
DR. GREENBERG: That is a major point we have made in the ICIDH environment, that it is not an assessment tool, it is a classification. You can come up with assessment tools that use it.
DR. COLTIN: But it also is more as a classification rather than an assessment tool. It is actually more compatible with a HIPAA transaction, because it is like ICD, which is an important component of the transaction.
So given that we were working through transactions, this was a more logical choice of a classification fit in that environment.
(Simultaneous discussion.)
DR. COLTIN: So you see where I am going? Now you are into ICIDH through building that argument. Then you can talk about what are the merits of ICIDH and what are the drawbacks.
DR. IEZZONI: You have to describe it first.
DR. COLTIN: But it is a different way of organizing the same information that is already in here, I think. To me it is a more logical way to present.
DR. IEZZONI: I don't think it is all that different from what we have got in here, in terms of the outline. I think it is different in terms of where the text is. But the text does need to be moved around.
(Simultaneous discussion.)
DR. IEZZONI: The one overall comment that I would make is that the current text classifies each of the testifiers in a little box, but each of them talked about a variety of different things. So you should have Nancy Whitelaw's part about what is the good thing about functional status measurement, when we talk about what is the good thing about functional status measurement and have her concerns about it, when we talk about what the concerns are.
So trying to take each individual presenter, instead of putting all of what they said in one place, take snippets of what they said and move it to where it really fits the best.
DR. QUEEN: I felt constrained to put all the testimony in this heading called issues raised in testimony.
DR. IEZZONI: No, no.
MS. WARD: I think the idea of putting the majority of that in an appendix is great, and then just highlighting.
DR. IEZZONI: I think the issues need to be there. It is just, we don't need all the testimony there. We don't need the detail. But these people brought up issues about why is functional status measurement important, what is the business case that has to be made for it.
MS. WARD: So it is the categories under which you want to put the major issues, not the person by person --
DR. STARFIELD: The problem with incorporating it into the text is that you give the impression that this represents everybody. I like the idea of having an appendix with the testimony. You can say something that is our viewpoint, and just refer to the testimony on something, not quote them necessarily. We bought that testimony, so it becomes our feeling, but they become the reference.
DR. IEZZONI: I think what we don't have in this contract is a description of what we did, in terms of who we identified to testify in front of us. The purpose of the study -- item 1B is not exactly how I would write it. I would say we went out and we solicited testimony from these people and we heard from this number, and here is an appendix with a list of all the people that we heard from and what their affiliations are and the dates, and what the questions are that we asked to them in an appendix.
But I think having snippets of what they said is how we have always written reports. It is how Dale Hitchcock wrote the report on the islands and territories, and that is what makes it kind of interesting.
MS. WARD: But they are mingled under some highlighted categories.
DR. IEZZONI: That's right, and that is what is not happening here.
MS. WARD: I think we need to give those issues under which you put -- we need to give that to you. I don't think that could be intuitive.
DR. IEZZONI: It is already in the outline.
DR. COLTIN: One of the things we did is that, we didn't go to the developers of these different functional status assessment tools. We went to the users of different tools and asked them how valuable they were for different purposes. We had laid out some purposes, that we thought it would be useful to have functional status. When we started talking about this project and why do it and why measure functional status, how would people use it, what would we want it for, what is driving us to get it.
Then we went to people who were using it for those purposes, and they talked about the different tools that they were using for those purposes. That is why we maybe didn't cover every single tool, because --
PARTICIPANT: No, the reason why we didn't cover every single tool is, it was overwhelming.
DR. COLTIN: But a number of people --
(Simultaneous discussion.)
DR. IEZZONI: We talked about having different contractors. We talked about having Westat come in, and it just got to be overwhelming.
DR. COLTIN: But it was more a user perspective.
DR. IEZZONI: Staff and we had a lot of trouble getting users to testify in front of us, especially the quality measurement people, Kathy. I'm not sure we ever really got good testimony from people in quality measurement.
So we are going to have to be very clear about who we heard from, what the limitations are, that we weren't able to hear from these kind of people, and we did from these kind of people. This was definitely kind of a scattershot that we were able to get.
DR. HITCHCOCK: I think up front you've got the basic series of interrogatory questions, the who, what, where, why and when, if those could all be addressed a little bit more, including the limitations, just a sentence or two, the rest might flow better from there.
DR. IEZZONI: Well, Dale, maybe you could work with Susan. Kathy, are you done with your overview comments? Those were very, very helpful.
MS. WARD: I only have one comment. We said it was the purpose of the report. I don't think that is correct. We are talking about a purpose of the assessment. That is my only comment.
DR. IEZZONI: That's right. Barbara, you are madly writing away.
DR. STARFIELD: I'm doing my job.
DR. IEZZONI: Do you have any overall tidbits of wisdom you would like the rest of us to know right now before Susan gets your detailed comments? No?
DR. STARFIELD: I said everything I need to say.
DR. IEZZONI: Vicki, do you feel that you have any -- you have just joined this process, so maybe you will have the most insight of all of us.
DR. MAYS: I have only read about the first few pages, and I would say that just in terms of reading it, I agree with what has been said about the need to have it fleshed out a little bit more, in terms of the issue of functional status. I kept looking to see what is it you all are talking about. So that is the first thing that strikes me. That is as far as I've gotten.
DR. STARFIELD: The list on page 11 of the dimensions, I think that has to be -- Marjorie, am I correct, that has to be sensitive, because the dimensions might not be those.
DR. IEZZONI: The whole description of ICIDH -- let me just give you my overview sense of it -- is too long. We could have some of it in an appendix, quite frankly.
I actually think that -- Marjorie, for this document that you are getting from WHO right now, do they have an overview description of what the current version of ICIDH looks like?
DR. GREENBERG: Yes, there is an introduction. It is about 25 pages, I think. I think you need to at least in the body of the report probably say what the structure of the classification is.
DR. IEZZONI: We need to describe it. It is just that I think it is a little too much right now. Some of it could go into an appendix. I frankly think that you should crib as much as possible from what is in WHO.
DR. GREENBERG: I think the December 15 version, that will be it at that point.
DR. QUEEN: Some of those sentences may not be too comprehensible.
DR. IEZZONI: Right, I could tell.
DR. GREENBERG: As I say, I haven't had a chance to read it, but it should be -- if the classification itself doesn't fairly clearly describe what it is, then it is quite a challenge to expect this committee to. But I think working on that, improving the clarity of it, -- one thing they have had in the past and they have now too is a table format, which might be something you could either put into the body, these are the components of it, or you could put in an appendix, I don't know. But that is a one-pager.
DR. IEZZONI: We also need to have in here -- I see you have a little placeholder for our case study. We need to have a little example of what codes look like, what their names are, because it is very sterile the way it is.
But Jerry Hendershot's little example from the Washington Post that we went through, I forget which meeting it was, of the gentleman who had an amputation or whatever it was, was such a great example, because it walked you through what would you code and what are the names of the codes. So we could have that -- instead of being in the text, we could have that be a little sidebar, or have that be a table, an exhibit maybe. Or the case study.
DR. GREENBERG: Use the same case study, but with the new codes, whatever they are.
DR. STARFIELD: Marjorie, I have a question on page 15. This international expert group related to ICIDH, the recommendations of this group. I find this so distracting, because they all talk about health.
DR. GREENBERG: Where is this now?
DR. STARFIELD: Page 15, and it doesn't refer to which group it is or where it is published. I would just as soon take this out, because I don't think it is helpful at all, because they use health.
DR. MAYS: The current status.
DR. STARFIELD: Current status.
DR. GREENBERG: Right, but you said the expert group is mentioned here?
DR. MAYS: Yes, look at the sentence right before it starts, one, two, three, the international experts. Who is that?
DR. GREENBERG: That is the one I mentioned this morning. The international expert group pulled together on these resolutions, they called it an expert group on measurement and classification. I don't really think they were classification experts in that group. It was more measurement. But even then, it was people like -- well, first of all they always have to have two people from each region. I know that Dr. Copeland, who is the director of CDC, was on the group. So they are pretty high level -- it wasn't really a methodological group.
But frankly, we asked actually at the meeting in Madrid, we wanted to get their names, because they will be looking at it again, so we wanted to know. I knew that Dr. Copeland was on it. I know one person from New Zealand. I don't know who else was on it. They said they would give us the names of the people who were on it. But your concern is?
DR. STARFIELD: I'm concerned because it is confusing. They didn't mention functional status at all in here.
DR. GREENBERG: This is when they recast the whole thing as health status measurement.
DR. IEZZONI: Let's look and see what comes out with the December 15 version. This is one of those examples that I think is too much.
So I think, Susan, the basic message is, try to edit this down. I don't know whether this is a place where Jerry Hendershot can help, since you have much more experience with it, but I think it does need to be written in comprehensible English, because if people cannot understand what this system is, they are not going to buy our recommendations to look at it. So for us to do the best advocacy job for this classification scheme, we have to write in English that is understandable, and isn't so wordsmithing that one word means something in general English usage and it has a very refined definition in the usage here.
So Marjorie, Susan, Jerry, Dale, some group of you guys -- Marjorie too, because Marjorie has been in the middle of all this -- has to help us think about, if we were going to have a two and a half page description of ICIDH in the middle of this report with an exhibit box that would have a case study so we can operationalize it, what would that two and a half pages look like, maybe three pages.
But I think that this is really key, because if people can't understand what this thing is, they are not going to listen to our recommendations to consider it. If Barbara is having trouble understanding what this is, being who she is, this is a problem for us.
DR. QUEEN: Jerry's testimony actually had more clarity. But I didn't use it because I didn't know if he would want me to use his take, but it had more clarity than the other documents that I had.
DR. IEZZONI: The other thing that wasn't in here that needs to be in here, Susan, was -- I think it was Paul Plasik who presented the results of the small amount of testing that we did in this country. The subcommittee members who were there, I think me and maybe one other person or two other people for part of the time, had some reactions to that. You should go back and look at our exact wording.
I think that we thought it was an okay first start, but we had some serious concerns about basing too much decision making upon it, because the study was very small. We had some concerns about how cases were sampled or whatever. You have to go back and look at the exact wording.
DR. QUEEN: Is that the May rollout that Paul was talking about?
DR. IEZZONI: Yes. It may have been at the July meeting that we talked about it. We did go into some of our concerns about the research. That needs to be in here as well, because it has to build up our point that we need more testing. Sure, a little tiny bit has been done so far, but it really hasn't been adequate to convince the research community.
DR. GREENBERG: If that was in July, it was actually before Jerry wrote a very nice report on the study three.
DR. IEZZONI: But you have to get our critique.
DR. GREENBERG: I don't know that you have actually seen that report. Has everyone gotten the report? If it was in July, it was before we had written up the result. I still think it is absolutely true that it was a modest amount. We had 136 case studies. It was fairly systematically done, but it was a small study.
DR. IEZZONI: It was self selected, there were no physicians there, you couldn't get any doctors to come. You only got certain types of people to agree to show up.
DR. GREENBERG: People who were interested, all of that. But would you like to actually have a copy of that report?
DR. IEZZONI: I frankly think that this is an important thing for us to have in this report. So I think we should all get copies of this, and this should get reviewed by our subcommittee before the conference call at the end of December. I think that we based on our review of this document should have some comments for Susan about our concerns or our happiness or satisfaction with aspects of this study. We shouldn't just say bad things, we should say good things, we should say pros and cons. John?
DR. LUMPKIN: Is it appropriate to do some more general comments?
DR. GREENBERG: Just to follow up on what you were saying, of course there is other research that was done too. I guess there is a document --
DR. IEZZONI: Susan needs to take a slight break.
DR. QUEEN: I'll be right back.
DR. IEZZONI: Don't say anything she needs to hear.
(Simultaneous discussion.)
(Remarks off the record.)
DR. KENNEDY: Lisa, there was extensive testing done in the U.S. on the mental health task force. It was part of our auspices -- it isn't just people in mental health involved. You always had disabilities and people from other -- we just shipped our data off to Geneva, so I don't have it. But it is retrievable. It could be analyzed separately. It has never been analyzed. I don't have the resources to do it.
DR. IEZZONI: Yes, and at this point it is --
DR. GREENBERG: There is a document that we received at the Madrid meeting. It is a summary of the testing that was done, and we can send that to you as well.
DR. IEZZONI: Although we are not in a position as a subcommittee, given that we aren't going to have any more meetings together except a conference call, to really do justice to this. I think what we can do is make the point that this testing has been done, but that we haven't had a chance to review it in great detail. I hesitate to say anything more until Susan comes back.
DR. GREENBERG: I can also send you a copy of this document from the Madrid meeting.
(Remarks off the record.)
DR. IEZZONI: While you were out of the room, we were hearing from Cille that there has actually been some testing of this, at least for the mental health portion, that we had been previously aware of. So at some point in the report we have to say that there has been testing, that the committee has not gone through it in detail. But one of the recommendations might be that the testing that has been done to date needs to be reviewed carefully to see where the gaps are and where additional testing needs to be done.
DR. GREENBERG: It can't be denied either that the testing was on the beta-2 draft.
DR. IEZZONI: Yes, that it was on a prior draft. We have already got a recommendation in there that testing needs to be done on the current draft, but this is to review testing on the prior draft.
Then John had overall comments for us.
DR. LUMPKIN: (Comments off mike.)
DR. IEZZONI: We talked about that before you came in the room. Paul Newacheck was especially eloquent about that, John. But I think this is actually the first time all of us have seen this draft in the detail in which it is. I think that you are absolutely right, we need to make sure we know who our audience is, and our audience is people who don't know anything about ICIDH or necessarily even functional status measurement. They need to be convinced of the value of it.
DR. LUMPKIN: It is almost as if the audience would be one of the X-12 committees.
DR. IEZZONI: Yes, you weren't here for that, but that was one of our recommendations, that we think one of the X-12 committees should -- I guess the DSMO?
DR. GREENBERG: There is a group. X-12 is one of those groups.
DR. IEZZONI: Yes, that they need to look at this.
DR. LUMPKIN: I say that in that they need to look at it, but I'm saying that the mind set of the individuals that might be looking at that are going to be tending to look at the clinical encounter beginning with the onset of injury and ending when the injury has occurred.
So we not only need to convince them of the importance of classification, but also of looking at an individual and how they fit back in society, as being an end point of health management.
So that is the reason I am saying -- and I don't know if you discussed this, but I think there needs to be some more justification to this group of functional status measurement, and then the arguments you make for classification will flow from that much easier.
DR. IEZZONI: Yes, we agree.
DR. STARFIELD: But John, we also said that there isn't any way that ICIDH can be used to describe an individual, because it is not a summary measure. You can describe aspect A, aspect B, but you can't put them together, unless you say this individual has got four of them. Exactly like with the ICD. You can't describe health with the ICD. You can't even describe the distribution of conditions in a person with the ICD. The same thing with the ICIDH.
We are probably thinking of the same thing, but you can't state it the way you stated it. You can't describe the functional status of an individual.
DR. GREENBERG: You can talk about whether a child can be participating in school, whether an individual can participate in work.
DR. STARFIELD: That's true, but an individual may be impaired functionally, whatever, in various aspects.
DR. GREENBERG: This is true.
DR. STARFIELD: So you are not describing the individual, you are describing one aspect or two aspects.
DR. KENNEDY: Or select what you want and develop a profile.
DR. STARFIELD: You can develop a profile, but nobody has done that. We have tried to do it with ICD, but I don't think anybody has tried it with ICIDH.
DR. KENNEDY: But the survey assessment instrument that is connected with this can give you a profile.
DR. STARFIELD: I didn't know that.
DR. IEZZONI: At the July meeting Paul Plasik handed out a one-page thing or something like that.
DR. QUEEN: Was it a checklist? Was that what they call the ICIDH checklist?
DR. KENNEDY: No, that's different. That is a way of documenting the ICIDH. But there is a survey instrument. World Health Organization has the disability assessment schedule two.
(Simultaneous discussion.)
DR. GREENBERG: It is supported by some. Some feel it should be more connected with ICIDH, other people feel it should be a separate thing from ICIDH.
DR. IEZZONI: We didn't really look at that, so we can't really comment on it.
DR. GREENBERG: I guess Cille is a good reference on that, but it might be something you could put in an appendix or something.
DR. IEZZONI: John, the point is -- Kathy is leaving right now, has spoken to us eloquently about, that the 837 form has a space holder on it for functional status already. But none of the rest of the subcommittee members have -- ANSE or X-12 or the different standards organizations, the people that they hang out with a lot. You see how I phrased that so eloquently.
So Marjorie though, you do, don't you? You know these people. So maybe you can look and make sure that we are trying to cast it to an audience, because I can't personally help cast something to an audience who I don't know who these people are and what they would want to hear.
DR. LUMPKIN: (Comments off mike.)
DR. GREENBERG: There is a potential there.
DR. LUMPKIN: Right. So if I am a clinician and I need to record the data that can allow the classification to occur, why should I do that? If I am a payor, why should I require that? If that doesn't happen in that interaction, the third alternative to this is that we are talking about an intelligent data abstraction system that is going to require an electronic medical record that then will pull out that information if it is an electronic form for classification.
That is obviously much further down the road. But I think if we are going to make the case for it, then other than the fact that it is going to be useful for research, I think some sort of case has to be made toward it.
If we are comfortable -- and this is the reason why I'm not certain about what it is that we are asking this to be used for and to do -- if we are comfortable that the only time it is going to be used is when somebody is trying to go back over the records and do a classification, then we are going to miss out on a whole lot of --
DR. IEZZONI: John, we have a lot of suggestions in here as to how it can be used. It is just that they are not organized in a way that they leap out of the page at you.
DR. LUMPKIN: Right. I actually read that part twice while I was sitting here.
DR. IEZZONI: It is not just one part. There is a bunch near the end and in the middle. It is different testifiers. It is not your fault, Susan. We have already talked about how some of the testifiers talked about the purpose, but they also talked about other things. So Susan put their purpose stuff in, where she talked about other things, too, so the purpose stuff doesn't really leap off the page at you, because it is not all under a heading called purpose. So we need to reorganize.
DR. HITCHCOCK: I wonder if we need to consider when we go over this the balance between the ICIDH, the report on that, and the report on the need to measure functional status. I don't think we want to lead too far in the way we report on ICIDH.
DR. IEZZONI: I think that we do have to make an absolute compelling case as to why functional status is important for a variety of different reasons. As I said earlier, we had trouble getting testifiers on quality of care. Remember, we really tried, and we were limited on who we could get to testify in front of us, as to the kind of people we could hear from about what they would use this information for. So we have made up our own -- yes, it will be helpful for functional status, even though we -- for quality measurement, even though we didn't necessarily hear somebody testifying for that. But we did hear people testifying about risk adjustment, about a variety of other things.
DR. GREENBERG: But although you didn't have people come to you to talk about quality assessment, when Greg Meyers -- when somebody from HCFA, when Kathy put together that panel that was to the full committee, and when each of them was asked, if you could add one element to administrative data, what would it be, and each of them said functional status.
DR. IEZZONI: That was the meeting that I wasn't at. I think it was June of '99.
(Simultaneous discussion.)
DR. IEZZONI: If we could have that in there, that would be really helpful.
DR. GREENBERG: As I said, that wasn't testimony to the subcommittee, it was to the full committee. It has been maybe two years ago, but it will be easy enough for us to look at the agendas of the full committee meetings and find out which one that was.
DR. IEZZONI: I'm not sure how much good it is going to do to spend more time on this right now, because I think that we have given Susan an overload amount of stuff.
(Simultaneous discussion.)
DR. IEZZONI: -- you guys afterwards to talk about this, because I think this is a huge amount for Susan.
DR. STARFIELD: Thanks for giving us something so good to look at.
DR. IEZZONI: Does anybody have anything pressing? Happy Birthday to Susan once again.
DR. GREENBERG: The work group on quality is at 8 o'clock tomorrow.
DR. LUMPKIN: I just have a followup from our executive subcommittee yesterday. In the interim, Lisa has --
DR. IEZZONI: Yes, I mentioned Dan Friedman.
DR. LUMPKIN: Okay, but one of the things that we will be looking once we get a better handle on the ICIDH is to re-evaluate some of the activities of the subcommittee.
DR. IEZZONI: We talked about that.
DR. LUMPKIN: You talked about all that?
DR. IEZZONI: And the diversity, before you got here.
(Simultaneous discussion.)
DR. IEZZONI: I wanted to leave my final message, which is, consider defining disparities more broadly than racial and ethnicity.
DR. LUMPKIN: Did you talk about prioritizing health issues?
(Simultaneous discussion.)
DR. LUMPKIN: Another aspect, and this is part of the focus on population health and trying to refocus the committee is that, is to look at the health priorities of the Department and to what extent are we seeing information related issues. I thought that this subcommittee might be the best place for that to occur over the next year, and then those priorities may spin off a work group or become activities of other committees within the national, subcommittees and work groups.
So that is an issue. I am going to have some discussions with Dan probably in the next face to face meeting of the subcommittee. Now I'm done.
DR. IEZZONI: Shall we adjourn? Okay, thank you.
(Whereupon, the meeting was adjourned at 4:40 p.m.)