[This Transcript is Unedited]
Hubert H. Humphrey Building
Room 705A
200 Independence Avenue, SW
Washington, DC 20201
Call to Order and Introductions - Dr. Iezzoni
ICIDH: Content, Training, Future Issues - Dr. Hendershot, Dr. Placek
DR. IEZZONI: Let's go around the room. I'm Lisa Iezzoni. I'm the chair of the Subcommittee on Populations for the National Committee on Vital and Health Statistics, which is what is meeting right now.
DR. NEWACHECK: Paul Newacheck with the University of California at San Francisco, member of the committee.
MR. HANDLER: Aaron Handler from the Indian Health Service of the Public Health Service. I'm a staff aide to the subcommittee.
DR. SIMEONSSON: Rune Simeonsson from the University of North Carolina.
DR. PLACEK: I'm Paul Placek from the National Center for Health Statistics.
DR. HENDERSHOT: Gerry Hendershot from the National Center for Health Statistics, and staff to the subcommittee.
MS. COLTIN: I'm Kathy Coltin from Harvard Pilgrim Health Care, a member of the committee.
MS. GREENBERG: I'm Marjorie Greenberg from the National Center for Health Statistics, CDC, and executive secretary to the committee.
DR. IEZZONI: Well, this morning Gerry and Paul are maybe going to talk us through the examples that Gerry left us with yesterday so we can get more of a hands-on feeling for what it is like to do -- should we start calling it ICFD, or should we still try to call it ICIDH?
DR. PLACEK: We can make poem if you like.
DR. IEZZONI: I'm trying to figure out a way to remember. It's kind of like when Kathy's company changed from Harvard Pilgrim -- Harvard Community Health Plan to Harvard Pilgrim Health Care.
Well, so, whatever. We're going to be maybe be walked through that example. And then we'll hopefully hear a lot more about the plans that you have for testing, training, that kind of thing.
DR. PLACEK: We have sort of worked out a logical progression of a way to present this information. By way of background, I've been involved in ICIDH study and revision for seven years now, since we hosted the first revision meeting in Washington in 1993.
It's clear that ICIDH-2, ICFD needs repairs, but which? If we have 10 different disability experts, we have 10 different opinions on which way to go. So we experts involved in the revision are doing standards evaluations worldwide. There are also translations mostly completed now in 20 languages. And these studies are being done in many languages as well.
WHO has approved eight protocols for study, and all collaborating centers and task forces are required to do studies 1, 2, and 3. In the United States we are doing 1, 2, and 3, 5, and a part of 8. The process for decision-making from now on is as follows. During the last two weeks in May we will be doing the field trials, or studies 1, 2, and 3.
And then in June the WHO is hosting an interim meeting of heads of ICIDH, late June. This is not the annual big revision meeting, but an interim meeting. It's kind of a stock taking on where we are, and which directions the field trials are pointing us.
From July through December the WHO writing team will assemble and work on revisions. November 14-18 in Madrid will be the annual WHO revision meeting, and it will be a large, glamorous, glorious event; at least it's so promised. In February the WHO executive committee meets, and if they approve it, put it on the agenda for the World Health Assembly in May 2001. There the World Health Assembly would vote on it as a WHO classification.
After that, there would be implementation and related tools. There really are already a number of versions short to long of the approved version. Just to be clear about it, there is the four digit version. Then there is the shorter two digit version, which you all have in your packets. Then there is a shorter yet version called the checklist, about 11 pages. Then WHO also has put out a WHO DAS(?) 12 item scale, and WHO DAS 36 item scale. It's 36 I think to compete with the SF-36. And I have that with the cover letter by Joanne Effing Jordan(?) of WHO. So that describes the 12 and the 36 item versions.
DR. IEZZONI: Do we have copies of that?
DR. PLACEK: Yes, lots.
DR. IEZZONI: Let's pass those out.
DR. PLACEK: Yesterday, Gerry Hendershot referred to other tools, and Rune Simeonsson is involved in planning a version useful for kids. There are other data collection instruments around. Gail Whiteneck has one which she has nicknamed chief. It's an update of the old chart, but it's based on ICIDH. David Gray is working on one. And there will be various specialized assessment tools depending on scientific disciplines and level of detail needed. So lots of tools are being developed around it.
Now I want to focus more on the US plans. So you can use this handout that says, "Go to ICIDH Web-Based Teaching Tool."
Next month we'll kill two ICIDH birds with three stones. One is the go to ICIDH Web-based training tool, and the other is studies 1, 2, and 3. And we are having 3-2 day sessions to do this. The first will be in Minneapolis, May 22-23. The second in Pomona, California, May 25-26. And the third will be in Hyattsville, Maryland on May 30-31.
We chose these locations because we have PC workshops there. We have 30 PC desks in Pomona, 24 in Minneapolis, and 12 in Hyattsville. Much of the two days will be spent at the PC using the Web-based learning tool. This will be its roll out essentially. And it will be available worldwide late next month.
The invitees are over 200 people to fill these 66 slots. You can see at the bottom of that cover page the kinds of invitees -- representatives of a wide variety of professional associations listed there, offices of disability, prevention program within state health departments. There are about 16 states, maybe more that are doing disability data collection in the BRFSS thanks to Don Lollar, some of those people are invited. People from rehabilitation programs, some representatives from the World Institute on Disability.
DR. IEZZONI: Physicians?
DR. PLACEK: Yes, absolutely.
DR. IEZZONI: Because you don't see the AMA there. We don't see the American College of Physicians, American College of Surgeons.
DR. PLACEK: We're glad to invite -- we're working from a couple of lists.
DR. IEZZONI: Well, the AMA ought to always be on a list, I would think, when you're talking about anything having to do with coding.
DR. PLACEK: Okay. I do have one of the invitee lists with me of about 160. There is another list of 60. But the letter of invitation says if you feel anybody else should have received your invitation in your group instead of you, why forward it. But we will be glad to add, because our letters are just going out as we speak, or last week.
DR. IEZZONI: Let me just see whether Rune and Paul have any suggestions. I think the American College of Physicians, which is internists. The American College of Surgeons, which is surgeons. Pediatrics -- American Academy of Pediatrics. The Orthopedics, the American Academy of Neurology, the American Psychological Association.
MS. COLTIN: You might try the American Group Practice Association too. They have been using the typists to collect data.
DR. IEZZONI: Other physician organizations. Definitely the AMA. CPT people may be different from the AMA. Joanna Schwartzberg(?) obviously you've talked to, but I think that you are going to want to involve more of the coding people, even though obviously CPT is a very different type of coding rubric. At least those are the folks that understand the issues of classification.
MS. GREENBERG: Donna Pickett.
DR. IEZZONI: Yes, that's actually a good idea, talking to Donna Pickett.
MS. GREENBERG: In fact, we may have contacts all through the classifications.
DR. IEZZONI: The American Physiatry Association too. I can't remember whether they are the American Physical Medicine and Rehabilitation Association -- I can't remember the exact name of their group, but Donna might know it. So I think that it will be important to include them, because it looks like you have included everybody else. It looks like a very broad list, except for doctors.
DR. PLACEK: There is at least one specialty group called the American Association of University Affiliated Facilities, which is a network of about 50 centers in each state that are interdisciplinary centers providing services to people with disabilities. They are usually attached to universities -- well, they are university affiliated. I can get you that information. I'll add APHA. That probably would make sure.
DR. NEWACHECK: Do you have the capacity to add PC slots if more than 66 response positively?
DR. PLACEK: No, we're limited by the size of the room and the number of PCs.
DR. NEWACHECK: So it's just the first 66 that respond then?
DR. PLACEK: No. If we have more applicants, we will prioritize.
MR. HANDLER: Paul, I was thinking of someone from the Veterans Administration.
DR. PLACEK: We do have the eight invitees. I couldn't list them all.
DR. IEZZONI: I think it will be very interesting to see who responds to those. And so, Paul, if you can kind of maybe in June give us an update as to what kind of folks said that they wanted to come. Because I think that that will give us a sense of where the interest is going to be, and where the lack of interest is.
DR. PLACEK: Okay. We have in some of those suggested groups, but we don't go over the whos right now I think. All right. Yes?
MS. GREENBERG: I was just going to mention that in the schedule that Paul gave you, there is also the annual North American Collaborating Center meeting, which is going to be September 14-15, Thursday and Friday, in Washington, DC.
So if anyone from the subcommittee would like to attend that, that would be really an opportunity to pull together what the North Americans have learned from this whole process of this year, and then what we are going to take to the Madrid if we have outstanding issues that have been identified in the testing, and don't get addressed at this interim meeting, et cetera. We will also have a number of presentations of people using ICIDH in their research or what have you. So if you are interested in that, let us know.
DR. PLACEK: Yes, I was looking at that. This subcommittee's hearing is October 24-25. So that will be right in between the NAC meeting and the Madrid meeting.
MS. GREENBERG: Right, and right during the Rio meeting on ICD.
DR. PLACEK: So at these 3-2 day meetings we are going to be doing studies 1, 2, and 3. And if you take a look at page 3 of 6 you will see the core studies listed, 1, 2, and 3, translation and linguistic evaluation, basic questions, and feasibility and reliability for coding cases and case summaries.
We are not doing translation, because the original document is in English, fortunately. However, there is linguistic evaluation, and there are 54 terms that people are asked to look at to see if they are suitable for their specialties or not in English. The basic questions, it's a list of about 11 specific questions that have to do with specifics of the classification, whether it meets their needs or not, and what specific ways, whether the boundaries and definitions are clear and such. And I have those with me too.
And study 3 is coding cases. There are 25 WHO cases or vignettes that are up on the Web, and a lot of people will be using those. Or people can code their own cases, whichever type they might decide to bring. And that is completely open as far as WHO is concerned. We have difficulty with coding real cases at NCHS, because of OMB. If you collect data on more than 10 cases, you require an OMB clearance.
Now if people on their own time want to code some of their own cases, and give us some general feedback, then we are very open to that. We can certainly code vignettes. Of the 25, by the way, four are children.
This is probably a good time to talk about coding cases. And Gerry Hendershot had an HIS example that we want to walk through.
DR. HENDERSHOT: Actually, we're not going to do the HIS case. I actually did develop an HIS, which if you are interested, I could share that with you. But I'm going to talk about the case which I distributed yesterday, and there are additional copies here if you don't have that case with you.
What I asked you to do in the instructions given on the first page was to read the case and code it the way a coder might code a case. The case was published in The Washington Post Sunday, February 6, 2000. It's about a man named Gregory Curry. I indicated in that article some of the information that would be used in coding in the case.
Mr. Curry had diabetes. He had an amputation below the knee. From the picture we can see that that was his right leg. He asked to be fitted with an artificial leg, and that's what the story is really about, because his health maintenance organization rejected his request for a prosthetic leg. It says the decision consigned Curry to crutches. We also see from the picture that he has a walker that he uses.
It says, "For six months Curry has stayed at home in Southeast Washington infuriated and discouraged that he can't be on the job fixing boilers and keeping tenants in public housing warm in winter and cool in summer." And then the details of his problem with the health management organization and the city are given.
And then near the end it said, "Both plans that he had been covered with allow workers to be reimbursed for durable medical equipment, which generally includes wheelchairs, walkers, special beds, and other items that can be reused by other patients. Last September the health maintenance organization claims processors concluded that a prosthetic device was not durable medical equipment, because it cannot be used by anyone else. So she rejected Curry's claim. The city interpreted durable medical equipment to include artificial limbs and said the leg should be covered."
Okay, so that's the information we have to go with in coding the case. And what I first took my shelf was the ICD-9, International Classification of Diseases, Ninth Revision, the alphabetical index in Volume 2. I gave you two pages. The first of those pages, page 28 from the index -- let's start with 138, the diabetes.
We know he had diabetes. The question is how do we code that in ICD. On page 138 we find a listing in the alphabetic index for diabetes, and it assigns a code value of 250.0. Now one should go to the actual classification and take a look at what that means.
DR. IEZZONI: Yes, because nobody is going to accept a three digit code of 250. Well, maybe some of your --
MS. GREENBERG: This I think is ICD-9, rather than ICD-9, clinical modification. So actually if they were coding it in the US, they would be using 9-CM. But, I think we get the point, I guess. You didn't ask us to code the ICD, right?
DR. IEZZONI: You have to make inferences though. You can infer that he had an amputation because he has gangrene related to the diabetes, so that would allow you to kind of infer that it's 250.6. But you're not supposed to technically infer things when you are coding. You are supposed to actually see something written down. And all we know from the Washington Post article is that he has diabetes.
So Kathy, I don't know whether Harvard Pilgrim would pay a claim that only had to 250. Few payers would.
MS. COLTIN: Presumably, this had to have been done in a hospital, so this would come in on a UB-92. If we run it through a DRD grouper, it won't group and have all of the necessary digits.
DR. IEZZONI: So that's just the first example of how coding is kind of an art. And how in fact coding is influenced by payment nowadays.
MS. GREENBERG: Well, presumably greater detail would also be helpful clinically, but payment requires it in any event. Now that we've trashed ICD.
DR. IEZZONI: No, we haven't at all. I think we have just clarified the fact that coding requires detailed information, and there is sometimes an art involved in it.
DR. HENDERSHOT: I should make it clear that I am not a coder, and I'm doing this as a well informed lay person, not as a coder.
MR. HANDLER: As a stand alone exercise, you need a four digit code with what you are doing. But if we were to put this on a HCFA form, the HCFA form itself would have the four digit code.
DR. IEZZONI: No, they don't.
MS. GREENBERG: You just put down the diagnosis. There isn't a check off list on a HCFA form.
MR. HANDLER: There is no diagnosis on there?
MS. GREENBERG: Well, it has to be put on by the physician.
MR. HANDLER: Right.
DR. IEZZONI: Okay, we didn't trash anything, Gerry. I think that this has been -- so let's move on to ICIDH.
DR. HENDERSHOT: We also can code the amputation on page 28, using ICD. So as I pointed out yesterday in the presentation I made, complete information about a health situation would include the diagnosis, the ICD code. But also then the functional classification, and if you turn next to the ICIDH-2, the International Classification of Function and Disease.
And the study 3 that Paul talked about will be coding cases. They are shorter, less complex than the one I have given you here, but they are like two or three paragraph vignettes or standard cases that we will be using, that WHO produced. So people will be reading that information and then filling out this form A, which has spaces for up to six codes in each of the dimensions of the ICFD, body function, body structure, activity, participation, and environment.
And then asks several questions of the coder. First of all, the ease of coding it from very easy to very difficult. The meaningfulness, from very meaningful to very meaningless. And the time it took to code the case. That's the information we'll get back from the coder, and we'll have their actual codes. And we can compare the codes assigned by different coders to look at reliability, and any patterns that might emerge, difficulties that they had coding.
So turning to body structure, I didn't give you the form for body function, because I didn't see any body function problems in this story or case. So we went right to body structure, and I gave you the first page of the body structure dimension. In ICFD, their definition of what the body structure dimension is. And there are two qualifiers. The first qualifier is what they call a uniform qualifier, ranging from no impairment coded 0, to complete impairment coded 4. And then there is an 8 and 9 for not specified and not applicable.
Then there is a second qualifier that says to be developed, but a suggested scheme locates the body structure problem in the body in terms of left side, right side, front, back, and so on. So the challenge is to code this body structure problem. And if we turn to the short list, the body structure dimension on the next page, you see the chapters listed there. And among those eight chapters, the one that looked promising to me would be Chapter 7, structure related to movement.
So I turned to Chapter 7, so we are now at page 10 of the handout. Looking at the major headings in Chapter 7, if you turn the page, you come to one that is called, "Structure of Lower Extremity." What we are coding here is the amputation. Under structure of lower extremity, we find S7501, lower leg. That is what I would have assigned this. I don't see how -- the further detail I don't think adds to our knowledge in this case. So the code then is 7501, and we would write that in on form A.
DR. NEWACHECK: Gerry, if you were going to go to that fifth digit, would you put it under the 9?
DR. HENDERSHOT: I guess you would have to.
DR. IEZZONI: I don't think you would go to the fifth digit though. Because what I have noticed in some of the more detail of the examples -- there will be one later on -- is that some of the detail is more kind of a hierarchy. It adds up to what the higher level is, which is somewhat different than ICD, the diagnostic classification is organized.
I think that just saying lower leg, because what you are talking about is a complete structure, is more clear. But I think that your question does bring up the art of coding issue that we were talking about.
DR. NEWACHECK: As long as we knew the ICD code was for amputation, then it would make sense. But if we didn't know that, we wouldn't know what we were really talking about here.
DR. IEZZONI: Well, but we have a case.
DR. NEWACHECK: No, I understand. I'm just saying if we just had the numbers or the coding and we were looking at this, we would have to have the ICD code in order to interpret this. I guess we always would though.
DR. HENDERSHOT: It helps make the point about the ICFD, that's a classification of the consequences of disease and disorder. So the consequence is a lower leg consequence, that in this case results from amputation, but could conceivably result from other -- it could have been a problem from birth, or I don't know what else. But it's the lower leg impairment that is referred to.
MS. GREENBERG: Gerry, they only provide for four digits on this form I see, so there is no expectation I guess that one would go to five digits.
DR. HENDERSHOT: Somebody else pointed that out to me. I think maybe we need to modify the form, if we are going to ask people to give the finest detail in the code, it should be provided for.
DR. SIMEONSSON: I want to follow-up Paul's statement. I think in this case an impairment in the early version is lack of and so forth. In this case it's an impairment, but in this case impairments means there is an absence of it. I think that's not clear. That may be an important point to make. I think the original 1980 version provided a little more clarity actually. There would be specific codes that would let you know whether or not there was an impairment, or there was a loss of the structure.
DR. IEZZONI: Yes, because then when you go to the qualifier, what I rated this as was complete, because it's just gone. It's missing. But this is one of the linguistic issues. You said that part of your test is going to be looking at linguistic evaluation. And I think that Rune brings up a really good point that it's impaired, but it's actually just gone. So it is kind of an odd linguistic choice for a limb that is gone.
DR. SIMEONSSON: I think the qualifiers here, the attempt was to make them as streamlined as possible. But it seems to me that an important qualifier would be to distinguish between abnormality, the lack of, and either a variation. I think some earlier language we had was variation in structure, function, or completeness I guess. Something like that. And I think that that should come out in the field trials actually.
DR. HENDERSHOT: Then the second qualifier I think works to identify it as the right lower leg. Then we turn to activities, and I have given the chapter listing in the activities dimension, and Chapter 4 deals with "Activities of Moving Around," which looks promising, because we are talking about this man's walking activity. And I have given you the qualifiers from the first page of the activities dimension.
The first qualifier again is this uniform qualifier. In this case, ranging from no difficulty to complete difficulty. Then the second qualifier in the activities dimension is the assistance received, which includes no assistance, non-personal assistance, that is devices, personal assistance, and both personal and non-personal assistance.
So we turn to Chapter 4, "Activities of Moving Around." The first major block of codes is walking and related activities. And under that, 410 is walking activities, which I actually used yesterday in talking about the structure of coding system. And that's where I put it, A410.
MS. GREENBERG: You didn't give a fourth digit?
DR. HENDERSHOT: I did not.
DR. IEZZONI: Because this is an example that is kind of like a hierarchy in a sense if somebody can't walk short distances, they probably not going to be able to walk long distances, or walk on different surfaces and around obstacles. But you may want to code. What I actually coded was the walking short distances, the 4100, because it seemed to me that coding that indicated how severe it was.
MS. GREENBERG: I thought of that, but I actually ended up coding 4109, because I said, whatever the walking activities were, he couldn't do them. So that shows some difference there. You said you only put 410.
DR. HENDERSHOT: If I were going to put another digit, I would have done the same thing you did.
MS. GREENBERG: The nine?
DR. HENDERSHOT: Well, the problem is it's not specified.
DR. IEZZONI: Right. Well, I think if you put it in unspecified, that that gives less information.
MS. GREENBERG: You may well be right. I debated between the two. I actually only gave a 3 confidence rating, because I really wasn't sure.
DR. NEWACHECK: I'd go with Lisa's on this one. Maybe we could average in and do 5.
DR. IEZZONI: Well, I also thought that less than one kilometer was a strange cut point for short distances. When I think of short distances, I think of 20 yards.
DR. NEWACHECK: Yes, really, that is a long stretch.
DR. IEZZONI: So from my point of view, if I could walk one kilometer -- so that seemed to me to be also one of the reasons why I put it there, because I thought it's standard. But then the whole issue of deciding how severe the difficulty is. He can do it on crutches, but is it severe? Is it moderate? I came down on the side of severe and not complete, because he could do it, but maybe it was one kilometer, it would have been complete. But if it's 20 yards --
MR. HANDLER: Gerry, if you are going to use this in the United States, I suggest you use miles or feet. People don't have a general knowledge in the United States of what a kilometer is.
DR. HENDERSHOT: This is the kind of thing that comes up in the study 1, Paul, the linguistic analysis. It was written in English, but the writers were all -- English was not necessarily a first language. And there is also British English and US English. So we do need to look at things like that.
DR. IEZZONI: And the major thing is the word "short." When you say short, the word miles or kilometers, even if you use either one of them coming after that as a definition, for me, the word short should be followed by feet or yards.
DR. NEWACHECK: Well, yes, if you think of the elderly community, probably half of the people over 70 couldn't walk a kilometer, but they can certainly get around their house and things like that.
DR. IEZZONI: But I applaud the effort to kind of give it a sense of how severe this is by this kind of hierarchy. It's just that I think it's got -- I never get the floor effect or ceiling effect straightened out, Paul. Would this be a floor effect? That you can't go down, because the most severe that you have includes somebody who can walk a kilometer -- less than a kilometer, but up to a kilometer. So you can't ever rate somebody worse than that.
Is that a floor or a ceiling? I never get that right. But you basically have one of those effects, that you are kind of truncating. If you are trying to come up with some indicator of severity, you are truncating it by having that be the distance standard.
DR. HENDERSHOT: I want to point out one thing about the use of the qualifiers in the activities dimension. If you go back to page 13 in the handout, after the first qualifier there is a paragraph that says if you use only the first qualifier, that is the uniform qualifier from no difficulty to complete, it implies a level of difficulty without the use of assistive devices. So if you used only that one, this person would be rated I guess complete.
DR. IEZZONI: Yes.
DR. HENDERSHOT: And if you use a second qualifier, it implies that the first qualifier now implies that this is a level of difficulty using the device. So if you allowed him to use his walker or his crutches, then you would code that as a second qualifier, one, non-personal assistance. And then the first qualifier then might become something less than complete. The problem may be severe or moderate. If he got his prosthetic device, then it might be mild or no difficulty.
MS. GREENBERG: I wasn't quite sure whether we were supposed to rate him with or without the prosthetic, but I did it without.
DR. NEWACHECK: Didn't you say that we were supposed to do it without? The first qualifier was without?
DR. HENDERSHOT: If you use only the first qualifier, then it's without. If you use both qualifiers, the first qualifier changes meaning.
DR. NEWACHECK: That's right.
MS. COLTIN: If this were being used to make a decision about whether he qualified for a prosthetic device, then you presumably want to rate him with the crutches, but not with the prosthesis.
MS. GREENBERG: Right, which I did.
DR. SIMEONSSON: If I may follow-up. I think this is what I think Don's point is, and what we certainly agree with him on this. This confounds the issue. What he wanted was the first qualifier would be without, and the second one with, so that you can make a distinction of what the contribution would be. But if you use it the way the system is now, you lose that information, because you don't know what the person would do without.
What is under the second qualifier is important information, but the way it is being used to qualify the first qualifier, causes you to lose that information.
DR. IEZZONI: Thank you, Rune, for bringing that up, because that does clarify what Don was saying yesterday. I didn't quite understand that, but that's good actually. That would be great to have that change, because you would get a lot more information that way.
Paul, can I just ask a process question. Are you making notes of all these suggestions that are coming from your colleagues like Don Lollar and Rune, and keeping a list of them and bringing them back to the WHO folks who are working on this? How is that working?
DR. PLACEK: There is systematic feedback in the studies. And we'll code it up too, so we'll know what we are sending WHO in the way of advice.
DR. IEZZONI: No, but I mean outside of this particular field test. As you are hearing from your colleagues in the United States, what their concerns are, is there a formal mechanism for you to feed that back to the authors?
DR. PLACEK: There isn't a formal mechanism unless they write a letter, send an email, something like that. I mean we know what kind of the basic problems are. We have been wrestling with them on a larger sense.
DR. HENDERSHOT: That's a very good point though. We need to develop some way for people to give us feedback systematically, and we don't have that right now.
MS. GREENBERG: We have a small batch. Rune and David Gray and Gail Whiteneck are all being funded by Don Lollar's shop and grants that they are doing related to ICIDH. So they feed into the North American comments et cetera that will probably be at the interim meeting. So we do consult with them regularly and the Canadians. But some of the types of things that have been suggested by others, I think we'll have the transcript from this. We'll certainly make note of them. We maybe can put something on the Website as well.
DR. PLACEK: We also collect all of this annually in NAC meeting from about 40 or 50 of the top US-Canadian people.
DR. IEZZONI: Because it sounds like final decisions are going to be made within the next 12 months.
MS. GREENBERG: They are.
DR. IEZZONI: And it would be good to make sure that that feedback is in the loop sooner, rather than later.
MS. GREENBERG: I think we see it as a living document. We'll still have issues with it probably, even once it's approved by the World Health Assembly.
DR. IEZZONI: But fundamentals about how qualifiers, what digits of qualifiers mean do get somewhat cast in stone until the next large revision. Witness what has happened to ICD.
MS. GREENBERG: Also, Don pointed out that some of the movement activities include -- they say with or without. Actually it says that here, walking with the help of a cane, et cetera. So it kind of confounds things also.
DR. HENDERSHOT: Continuing with the example, we are now on page 15, looking at the participation dimension. This is the societal or community aspect of the classification. And again, the uniform qualifier, in this case ranging from no restriction to complete restriction is available. And the second qualifier says to be developed possibly to denote subjective satisfaction. That is, satisfaction would be level and kind of participation in social life.
The chapters in participation I have listed on page 16 of the handout. You see Chapter 7, "Participation in Work and Employment," which was the main focus of the case that we are looking at. If we turn to Chapter 7, "Participation in Work and Employment," and look at the categories listed below that, one is participation in renumerative employment. That looked appropriate to me. And under that, participation, full-time renumerative employment. But again, you get the same kind of coding decision we had in the walking. He certainly isn't doing full-time, but part-time maybe.
DR. IEZZONI: Well, yes, here I felt like you had to code what this gentleman was doing now. But it raises the issue of what could he be doing. And this is what Michele Adler is going to have to kind of struggle with, with the Social Security stuff. Because obviously, he still is cognitively intact. He still has his hands. He could do employment if it didn't require him to walk. But I think we have to code what he is experiencing right now. At least that was my feeling about it.
DR. HENDERSHOT: That is the intention of this dimension, that you are coding what the person is actually doing now, participating. And determining whether or not his participation is restricted. In this case, I don't know what severity scale --
DR. IEZZONI: I think it's complete, or four.
DR. NEWACHECK: Gerry, before we leave that one, so in this participation category there are several chapters here that would apply or could apply to this individual -- economic life, community, social, civic life, mobility. Would the expectation be -- you picked the one on work and employment presumably, because that's the most important one to this individual, or has the most impact.
So would the assumption be that the coder would code these other chapters too that are applying to this individual? Clearly, having an amputation is going to affect several of these chapters.
DR. HENDERSHOT: The ICIDH 1980 participation, it was called handicapped then, but the equivalent to participation then did expect that each of the chapters would be coded. You could code for each of those. Because those chapters were defined as survival roles, and the assumption was that everybody participates or needs to participate in a survival role. And participating in a survival role by it's nature -- and in the new version it is not clear to me whether one is expected to code each chapter or not.
I think not. I think you would code those that are -- you have to think in context, the person is coding for a purpose. And in this case, the way it is presented to us, clearly it is the employment issue that is prominent. And I assumed that as a coder I was coding it to capture that, and was therefore not interested in the other chapters.
DR. NEWACHECK: But that's kind of like if you are interested in sort of social policy or public policy or whatever, employment is important. But for the individual it may be participation in community that is more important or something like that. I guess what I'm thinking about is unless you code all of these, which would be a huge task, then the data are not really -- let me rephrase that -- they are potentially biased information.
That is, if we were trying to use this to present a profile of how many people in the United States were limited in their participation in social activities, and we didn't bother to code that, because it wasn't the most important one, we would have biased information to work with. We would underestimate the number or the proportion of the population that was limited in their participation in community activities, that sort of thing.
DR. HENDERSHOT: I agree if your intention was to get a complete of a person's participation, then your data collection instrument ought to elicit information about each of those chapters. And you could then code a person in each of the chapters. But that would be a survey kind of operation that you are talking about there I think. And in the field of administrative records, I think you would be picking one or two of these chapters.
DR. NEWACHECK: One of the purposes we talked about for having a functional status code on the administrative records was for public health purposes. And that is to be able to present population-based information on the health of the public. If we are only coding selectively, I'm not sure we would be able to do that very well. It's just something to think about I guess.
DR. IEZZONI: Well, the point is that there is a huge amount of richness possible with this particular coding scheme. And that we are going to have to have --
DR. NEWACHECK: Incredibly.
DR. IEZZONI: Yes, it's incredibly rich. And we're going to have to figure out for administrative records, what the balance might be. And I think that you are absolutely right, Paul, that the purpose of the data collection may tip you in one way versus another. In the way that the Washington Post article is presented, it's clear that renumeration is the issue for this poor man right now. He has no income. He is living on the help of other folks. And so I think Gerry was appropriate to choose that, but it will represent a subjective choice if there isn't a contextual kind of guidance laid down.
DR. SIMEONSSON: That was a point well taken. As we mentioned yesterday, the 1980 version handicap, was in fact a much more scale oriented instrument. So that the six dimensions in each one had ordinal scales. So in fact you generated a profile. I think this system goes in a very different direction, and I think getting back to your comment about what would be useful from a public health standpoint? I do think you have to prioritize, and they probably will be in the activities area.
I think it seems to me that various agencies in the federal government that deal with labor or justice or other issues look at the participation code and select those chapters that might be highly relevant to them. It seems to me that it would be very hard to make a decision about which one you want to go with, because once you get into this area of participation, the issue of choice about life and what life means, and those other big words like quality of life really start coming in.
As a matter of fact, the dimension of having access to something, as opposed to exercising choice to do something becomes very important in participation. And that one is going to be much more difficult, I think, to deal with, and to operationalize and to use from a public health standpoint.
DR. IEZZONI: This also is an issue where the proxy concern rises, I would think. That it would be much easier for a health professional to make an objective assessment about whether somebody is able to participate in employment, rather than how people feel about community participation or some of the other more quality of life oriented activities.
So the source of the data or who is doing the assessment may also drive you in terms of the validity of the assessment that you would expect to get from the person's point of view.
DR. HENDERSHOT: Continuing with the case, we're now on page 18 --
DR. IEZZONI: Gerry, by the way, we love this case. You might think that we're being critical, but it's causing us to really think, so it's been very helpful.
DR. HENDERSHOT: We are now to the last dimension, environmental factors. If participation is the interaction between a person and the environment, the environmental dimension tries to single out the environmental factors that are relevant in the case being coded. The first qualifier you will notice has both negative and positive aspect barriers and facilitators, and with barriers preceded by a minus sign, and the facilitators preceded by a plus sign.
Because people wanted to be able to capture both of those things, if a person's situation was such that they had access to things which did make it possible for them to participate. There is no second qualifier yet.
So turning to the list of chapters in the environmental, I focused here on Chapter 6, "Systems and Policies." That came through most clearly in the case. I think there are probably some other possibilities. Under systems and policies on page 20, if you look down the list you find E670, health systems and policies.
There is some art to this. My feeling was that the decision was made by the HMO to deny the application for a prosthetic device on the basis of an interpretation of the rule, which was could it be used again by another person. And the interpretation by the person making the decision was that a prosthetic device, a leg, could not be used by another person, because it is fitted to the particular person, and therefore, the rule said that it should not be allowed.
So I see this as a policy of the health maintenance organization that is the barrier to this person's participation. That was my interpretation.
DR. IEZZONI: Yes, that would be a complete barrier. This coding though raising the question about how things change over time, which is something that we have talked about a lot. Because obviously it was a low level clerk who made this decision, and once it hit The Washington Post, the decision was reversed.
MS. GREENBERG: I think it had been reversed earlier.
DR. IEZZONI: They claimed it had reversed in September, and the letter went astray and it was nailed to the PC. But the point is that there is a change over time. So my question would be, Gerry, for the initial thing when the person was denied the prosthetic limb, it would be a complete barrier. But when the health insurer decided to pay for it, would it now all of the sudden become a complete facilitator?
MS. GREENBERG: It depends on how he adapted to it.
DR. IEZZONI: Well, no, because the adaptation, the quantity here that we are looking at is health policy.
MS. GREENBERG: Well, that's true.
DR. IEZZONI: And you would talk more about his functional ability in other dimensions of the coding.
MS. GREENBERG: They would also have to provide physical therapy.
DR. IEZZONI: Well, but let's say now that all of the sudden the HMO really kicked in, and they did everything that they were supposed to do, would they then become a complete facilitator? And so this shows how something could kind of maybe flip-flop around a little bit on this. But it's a very interesting --
DR. NEWACHECK: When I look at this, I would have coded this as E115, which is products personal use of daily living, which includes prosthetic devices. So that's the actual thing in the environment that is missing. So I would have put the code there.
But the chapter that you picked, Gerry, is really the reason or the cause behind the absence of the prosthetic device. So there are really two different concepts here. One is what is the item in the environment that is creating the problem? And that's the prosthetic device. And what is the cause of that? That's the health policy or the insurance policy. It's seems like we are sort of mixing apples and oranges within this particular chapter or this dimension, the environmental factors.
DR. IEZZONI: But are prosthetic limbs and products and technology relating to the environment? Are the products in Chapter 1 of environmental factors?
DR. NEWACHECK: Well, they are right here. It says products for personal use, collectively all pieces of equipment or systems or products, process, methods, and technology used to maintain or increase. It's page 14 of this. But it specifically says these are the products used to make you function, and it lists prosthetic device. So I would think that would be the natural place to put this. But that's sort of the equipment item in the environment, not the cause of it.
DR. HENDERSHOT: I think again that it would depend on the context in which the coding is being done. Paul and I heard earlier this week, a very good discussion of the Supreme Court cases, and how they affected the policies of the Equal Employment Opportunities Commission. This was by the director of the Division of Policy in EEOC. So their concern is policies, and how they affect employment. If that was your interest, I think you would code it the way did, because it locates a policy issue that needs to be dealt with in some way.
But if your interest is in physical therapy say, then I could your choice would be the appropriate choice to make. Those people are not in a position to deal with policy issues, perhaps, but they can deal with a prosthetic device. So I think in part it will depend on what you are using the coding system for.
I think the value of this, and I'm just really realizing some of these things myself, so this has been very helpful to me too, is that if you have this as part of your classification system, it causes people to think about environmental factors, whereas otherwise they probably won't.
So you get in the code and in the people applying the code, a stimulus to thinking about environmental factors, and how they might be changed to improve participation. That's the contribution that this dimension makes I think.
DR. IEZZONI: It's been very helpful. Let me just point out also that prostheses don't always work for people. Sen. Max Cleland(?) is a case a point. He found that after years of struggling to walk in his two prosthetic limbs, that his stumps were bleeding all the time, and he just decided to go to use a wheelchair. So sometimes it might look like if you code the prosthesis under products and technology, that you are anticipating a result that you don't yet know is going to actually take place. You have a high expectation that it probably will, but it's not an absolute certainty.
DR. SIMEONSSON: I think the concept of facilitators is a little bit problematic, because on the one hand for public policy purposes or public health purposes, you establish what a barrier is. That's very clear. But there is an infinite number of things that can facilitate. So in this case, you could think about it the other way. If the person got their prosthesis, in this case he would, would you then go back and say this is a facilitator? There is hardly a reason to do that.
I think what drives the system is to establish what is needed, and what level barrier is it? So I think the underlying concept was to have a positive frame, and just talk about what has occurred at the social and societal levels on behalf of people with disabilities. But I think this is a very interesting theme. We'll see what will happen in field trials. But I think probably from a public policy standpoint, it's unimaginable how much work that would be to try to figure out what is a facilitator.
DR. IEZZONI: Gerry, this was a great case. I really thank you. I think it was really fun that it came right from the newspaper, because it really made it real.
Where do the cases come from that WHO is going be using as their training vignettes?
DR. PLACEK: They were just submitted by various people around the world.
DR. IEZZONI: I would at least like to see some of them. I think it would be fun to see them.
DR. PLACEK: I've got all 25 right here.
DR. IEZZONI: Oh, good.
DR. NEWACHECK: Lisa wants to be a coder.
DR. IEZZONI: No. Well, I've used codes long enough for research. You have to kind of understand them.
DR. PLACEK: So we have these codes, and we have some additional cases in the training manual that NCHS funded. It's kind of a thick document. So we can use either, or we can use real cases. People can bring in real cases, except that we have to be careful about collecting data.
MS. GREENBERG: Getting back to what you said, Paul, some of these WHO scenarios do involve participation in several aspects -- employment, being able to go to church. They have several parts of like participation or activities.
DR. IEZZONI: Great.
DR. HENDERSHOT: That concludes our walk through this case. We are sort of at your service now. I am prepared to do a couple of more things that I thought might be helpful to the subcommittee, one of which is to talk about strengths and weaknesses of the ICIDH as I see, or as I've heard other people express them.
Another is I prepared, and I think you got -- there was a lot of talk yesterday about how this might fit into administrative records, and I just took 30 minutes to think of a couple of ways. Not to suggest that these are good ways, certainly the not the best ways, but just to have something more concrete in front of you to focus discussion.
And then I also have a couple of suggestions of what the committee might do.
DR. IEZZONI: Great. Why don't we hear what you have prepared?
DR. HENDERSHOT: It won't take very long. First, strengths and weaknesses. Starting with the weaknesses, I am convinced by what I hear people say that it is complex and difficult to understand. It is really untested, and little known or used, certainly in the United States; more known and used in Europe and some other places.
And it has a number of glitches here, things that I just don't understand quite why they are the way they are in the current version. Why are seeing, hearing, and talking in the body dimension rather than in the activities dimension? I don't quite get that, and apparently some other people don't quite get that either. And why are major life activities a chapter in the activities section, when they seem to be participation kinds of things. These two things I think are going to be a focus of a lot of the discussion that occurs between now and the final version.
It's a framework and a classification. There are a lot of frameworks around models of disability. This is different, and it's a strength that it also has a classification, not just a framework. It is multi-dimensional. I think everybody now who has thought about this very much agrees that we have to think of disability as a multi-dimensional phenomenon.
It is very comprehensive. It attempts to include the whole range of possible ways of thinking about disability. And it is also very detailed. It is sponsored by WHO, which I think of as a strength, and it is supported by an international network of specialists and experts in the area of disability. It's multicultural and multi-language.
In addition to the language, which Paul mentioned earlier, what did you say, about 20 languages it's already in, the current version? It's also multicultural. That is, there was, has been, and continues to be an attempt to come up with a classification that can be used in different cultures successfully.
DR. PLACEK: Because you lose that slide, it's also multi-purpose in its potential applications. And also there has been a systematic attempt to include people with disabilities, and people representing organizations, to include them in the revision process all along.
DR. IEZZONI: Can I just ask a question about the multi-cultural side of things? I heard a report the other day about the Talman(?) in Afghanistan not allowing girls to go to school. And certainly I think gender is where roles really break down a lot across cultures. How have people in trying to design this international system, thought about cultures that have very, very different ways of assigning roles for the participation dimension? Like the Afghanistan example that I just gave, a girl theoretically shouldn't be going to school when she is young, but we all said that that is the one international thing that kids do.
MR. HANDLER: Another example is the Middle East War, Desert Storm, where females in the military were driving jeeps, and that's against the law in Saudi Arabia, so they were told not to drive in Saudi Arabia.
DR. SIMEONSSON: Can I just comment on that? Actually, this has been brought up repeatedly. On page 11, it does not cover functional states that are not health-related, such as those brought about by socio-economic factors, independent health conditions, and then they go on to list people may be restricted because of race, gender, religion, or other socio-economic categories. But these are not health-related restrictions of participation as classified in the ICIDH-2. So there is an attempt to do that.
Now I think the issue is the interaction effects. So frame that, and I think that's a good point. But when we get into a lot of the different states, certainly health conditions are a consequence of race or gender or others kinds of discrimination, and the lack of opportunities and so forth, but how do you make that case? So I think that's something that your subcommittee really needs to deal with in terms of deciding what is going to go into that functional dimension.
So you somehow either have to infer an underlying health condition. We often do. So for example, physical, behavioral, or mental, well, if it's behavioral, what about motivation, and so forth and so on? So I think these are issues that are not unique to this document, but I think were more broad.
DR. HENDERSHOT: I would add to that that, yesterday I think Rune and maybe Don also referred to the UN standards, which are statements of goals or ideals that United Nations members are expected to try to adhere to. And they include things like gender equality or gender fairness. I don't know exactly if it covers that. But those standards are sort of behind in supporting the classification.
DR. IEZZONI: So when you say multicultural, what are you getting at then?
DR. HENDERSHOT: Well, that kind of thing.
DR. IEZZONI: Even though they might be outside of the health system.
DR. HENDERSHOT: Well, in the area of participation, for instance and environment, different cultures might have different standards of participation. So in some societies women are not expected to do some kinds of things. So that becomes a standard of participation in that cultural setting. And whereas in another culture women might be expected to do that kind of thing, whatever it is, and that becomes that standard.
DR. IEZZONI: But that would be the exact example that I just kind of gave, Gerry, of girls not being able to go to school. But it's not because of health-related problems. It's because of policies and the rulers of the country.
DR. HENDERSHOT: Right. The point I was trying to make is that those kind of cultural differences, the classification was intended to be useful in a variety of different cultural circumstances. So it would be useful in a country such as -- was it Afghanistan -- as well as the United States. It would be sort of culture neutral.
MS. COLTIN: So what that means then is that within each culture they would be able to interpret their own data, because they would have an understanding of the expected roles that people might play. But internationally in trying to make any comparisons across countries, you would have a great deal of difficulty, because the role expectations would vary, right?
DR. PLACEK: Well, you would want to observe that though. You would want to observe that in the coding, social participation differs for people with the same disability, so to speak. I think the coding would capture that.
MS. COLTIN: Well, but take Lisa's example. You could have a girl who wouldn't have been able to go to school, but it never got coded, because it wasn't expected that she would go to school.
DR. PLACEK: Okay, I see what you are getting at.
MS. GREENBERG: I think this would be an interesting thing to engage the head of this activity, Dr. Ustan(?) on, because I know there have been quite a few multicultural studies related to the mental health side. We haven't been particularly involved with those, but someone at NIMH has been. Actually, probably having Ceil(?) Kennedy from NIMH, who heads up the mental health and behavior -- it's a long name -- but task force. It would probably be good to hear from her as well.
DR. SIMEONSSON: If I can just follow-up on one more thing. That was with the 1980 version, even though people rejected the linear model, it made it very clear that you did start with the consequence of an illness, injury, or disease, and then you proceeded to go to the right. In this case with the arrows going every which way, the issue is you could come in, in the middle, and in this case since you already raised the issue of female illiteracy, you have to make a decision. There is a disability, because we can code it in there, because it's in the activities domain. But we may not be able to go the other way and say, is it because of the health condition? No.
So we won't have probably that kind of problem in this country, but it is a broader issue that gets back to the kind of things that the Supreme Court has to wrestle with from time to time. I think it just takes different expressions.
As far as the multicultural issue, as I see it, and has been part of this process for such a long time, it really has to do with can we use language, which is as culturally broad and fair and non-judgmental as possible. But I think at the ultimate level in any given society, and I'm very interested in how we are going to define disability in the developing world with children, we have to keep going to the left. That is, activities and probably into function, and some combination there to capture these things, because the more you go to the right, it really becomes much more of a judgmental subjective dimension.
DR. IEZZONI: That's very helpful.
DR. NEWACHECK: I had a question for those of you who are involved in this process. It seems to me one of the difficulties with this is that it is fairly complex, as Gerry pointed out. Particularly when you get down to all the three digit and four digit codes and qualifiers and all these various dimensions and chapters. Is there any thinking that there might be sort of shorthand version of this that could be adopted, because of the steep learning curve to do the full set?
DR. PLACEK: They would have it. I think the consensus is probably that this two digit version is going to wind up being the most widely used version.
DR. NEWACHECK: So that would be lowest common denominator maybe or something like that then?
DR. PLACEK: Yes, this little handbook. We had 25 ordered. We hoped to have them in time for today, but we'll have them next time. You'll have your own spiral bound. But this is the one that I think WHO thinks will probably get the widest use, the two digit version. There is an A, and then there is a chapter number, and then there are two digits.
DR. NEWACHECK: How would it work?
DR. PLACEK: Well, say A839, A is the activity, 8 means we're in Chapter 8, and then 39 is the two digit code. So this is considered to be the two digit version. That's what everybody has in their packets.
MS. GREENBERG: That's what this is.
DR. PLACEK: Yes. Then there is the four digit version.
MS. GREENBERG: What you gave us, Gerry, in the example I guess was the four digit. In Gerry's example, he included the whole four digit, and some pages from the four digit.
DR. NEWACHECK: Right, but even the two digit is fairly complex.
DR. IEZZONI: Because it's not really just two digits. It's a chapter and an alphanumeric.
DR. NEWACHECK: Yes, qualifiers and that. I actually liked what you did here, Gerry. This seems like this is something that you could actually do, like your first example here, with a little bit of added instruction, this might actually be feasible to implement in a wide scale, and would, I think, have some good value.
Obviously, that's not sophisticated enough for risk adjustment or some of the other purposes we talked about, but for populations profiling and public health purposes, and things like that, to get a picture of the functional status of the population, and the kinds of limitations that people experience, I think this would be very valuable.
DR. PLACEK: We thought we'll have a good group of people, really trained in this and steeped in it after our workshops next month. And we thought of maybe involving them in an exercise like this. Maybe forming a committee to take a look at its potential use in administrative records from a variety of disciplines.
So rather than have the one or two time use of this group, one time to do studies 1, 2, 3, two time to testify to the committee in July or October, it might be a three time use of the group's talents by taking a focused look at actually some systematic study for possible use in administrative records.
MR. HANDLER: You have a similar type problem with using ICD-9 for mortality coding. Actually, the ICD-9 book is about three inches long, but for classifying leading causes of death, you use what is called a 72 Cause Death Recode, which is fewer than 72 causes, because a lot of those 72 are all other category. You have 60-odd possible categories.
DR. PLACEK: Then we do the top ten.
MR. HANDLER: Yes, and that's what is used most often for mortality coding, the leading causes. Then you have something that is a little more detailed, 282 causes of death. Like for example for malignant neoplasms it may be 10 categories identified separately in the 282 recode. Then you have a third type of cause of death code, the 61 causes of death for infant deaths, specific for infants and children.
The same type of thing could be done for disability and functional impairment maybe. Smaller recodes that are used more often.
DR. PLACEK: I hope in my lifetime I see that, international comparisons of disability by a 72 item list.
MR. HANDLER: Well, we have similar codes for mortality worldwide.
DR. PLACEK: I know, it could be done.
DR. IEZZONI: So Paul and Gerry, anything more?
MS. GREENBERG: Do you want to talk about this?
DR. PLACEK: Yes, and I want to just say a few words about the DISTAB project, because DISTAB is the first word here.
DR. IEZZONI: What does that mean?
DR. PLACEK: This is study 5. It's use of the ICIDH in surveys. Yesterday we heard about the HIS, and your comment, Lisa, well, okay, but it wasn't about ICIDH. But actually the HIS, much of the data has been back coded into ICIDH-2 codes, and that is the US part of this project. Then there is a South African survey, the Canadian health and activities limitation survey, the Dutch survey, and the French survey.
And I talked about this before, so I don't want to be repetitive, but you can see from the bold caption at the top that we are looking at nine kinds of disabilities. Most of these are activities in the ICIDH coding scheme. This is the same handout as you had before. So as I said before, there are 42 questions which refer to hearing in the 5 countries, but we are able to capture the hearing questions with ICIDH codes.
There are on the third and fourth pages, specific questions from different countries which have the ICIDH codes on them. And we haven't been able to do this successfully. But we do have the feedback forum to WHO to tell them about any information that we are unable to capture in surveys and code to ICIDH-2.
This group first met in November in Washington. It meets monthly by conference call on the third Wednesday, and will meet again in June, piggy-backing with the interim meeting in Geneva. Then will present its final findings in September at the NAC meeting.
Now these are the top survey statisticians in these five countries doing this project, but I had a thought about the administrative records. These people might be contact persons for us to tie into the administrative records people in other countries, to possibly look at administrative records use in other countries. So we might internationalize the project, since we have the contacts.
And we might bring this up at the heads of ICIDH interim meeting in June as well, to try and get some additional contacts for administrative records people. Who the ICIDH specialists might know.
I have a sense the committee may be interested in going in that direction, and a project in that direction. I don't think we want to go around telling it, unless we know that.
DR. IEZZONI: I think that it would be very valuable to ask the people that you are working with in the other countries around surveys if they have colleagues who look at administrative records, and find out whether in fact there is any initiative to pursue that in their countries. I think that I would hate to have you do much more on our behalf, Paul.
I think it would be much more appropriate if the interest was generated by the committee that you are working with on this DISTAB project, and if they were interested in it. But I would hate to have you feel that we wanted to push something like that forward, although I think we would like to hear if there is any international interest in doing it.
I also think that our committee -- well, I guess Don Detmer tried to educate us a little bit about what administrative forms look like in other countries. But I don't think that we have a very good sense, for example, in South Africa, what their administrative records look like. Whether they even have anything that is equivalent to our enrollment and our encounter records. Do you they?
MS. GREENBERG: They use ICD.
DR. IEZZONI: Yes, but do they have something like a HCFA-1500 form?
MS. COLTIN: I'm not even sure that's the right question any more, because everyone is moving to Web-based applications for entering administrative data. I think within two years you are going to see that as the major mode. And people are going to be using at least some subset of the fields that are on the 837, which go way beyond what's on the paper form right now.
People may not go all the way in terms of coding and entering everything that's on the 837 until they have to in terms of compliance with HIPAA, but I think that the Web-based applications that are being developed now, are being developed with the view toward coming into compliance.
DR. IEZZONI: But will that be true in South Africa, in the Netherlands?
MS. COLTIN: I wouldn't be surprised. Some of these other countries, when you look at their Websites, are way ahead of us.
DR. IEZZONI: Well, that would be good to hear. Paul, I think it would be that our committee would be very grateful if you would at least bring up the topic at your meeting in June, you said.
DR. PLACEK: We can start next Wednesday. We have a conference call next Wednesday.
DR. IEZZONI: And just see whether this is something that makes people want to talk about it further.
Paul and Gerry are here as a resource to us. Do we have any more questions for them? This has been extremely helpful.
DR. NEWACHECK: Very helpful.
MS. COLTIN: Yesterday we talked about sort of summarizing, getting a sense of where we thought we were. I thought that comment Rune made earlier about sort of looking to the left side, and saying if we were going to go ahead, if we were going to even think about pushing forward on use of ICIDH in administrative records, what aspects of it would we want to include?
I mean there is sort of this presumption that it's activities, and maybe it is, but do we need to at least affirm that that would be what we would want? And if so, what are the strengths and weaknesses that we want to focus on in the activities area, because I think the point that was made earlier about the way the qualifiers are set up now, you wouldn't be able to get the information with and without assistive devices. And would that be something we would want to be able to do? And what we recommend if that were the case?
DR. IEZZONI: I feel, to use a word that maybe I shouldn't, I feel we are a bit handicapped in having a discussion right now about the sense of the committee, because there are only three of us here. I'm especially concerned about Barbara Starfield not being here, because she has strong views about population health and capturing that. So I think, Kathy, that your question is right on target.
DR. NEWACHECK: But it does seem that we talked about it around the table of there is this notion that this could be incredibly rich, but also incredibly complicated, and maybe too complicated realistically to code on all administrative records. And then Gerry suggested something that is very simple, which I think could be very useful, but maybe there is something in between that we want to kind of hone in on that would be realistic, and also potentially somewhat rich anyway.
DR. IEZZONI: I think what I would love to hear is from Gerry and Paul, when you go back to your offices and think about the last couple of days of interacting with the subcommittee, I think that this is a great start. But, Gerry, it would be helpful for me to know whether you think we should include this person has substantial difficulty without an assistive device, or with an assistive device. Because this one thing doesn't really identify that.
Whether you, from your expertise, can think through looking at what Gerry sketched out last night, but just a great start, but just the two of you thinking through it a little bit more, and maybe coming back with a straw person proposal to us about what something might look like for administrative records, with what the options might be, would be helpful.
DR. NEWACHECK: Another model might be instead of indicating just those ones that cause substantial difficulty, to indicate whether any of the eight codes apply, and then have a modifier for severity or something attached to that, from mild to severe, or whatever, or something like that.
DR. PLACEK: A number of people in the room have been invited to the roll out. I don't know if they will have time to attend. If not, maybe we might arrange a demonstration of the Web tool, because it will have literal entry capability, 5,000 terms for the 2,000 or so categories in the four digit version. So you might be able to enter a key word, and then the possibilities for its classification are immediately in front of you on the screen. That is what is going to happen in the roll out next month, but we might arrange a demonstration in July.
DR. IEZZONI: I think your point about that raises the issue that we should really include Simon Cohn and the electronic medical record work group in thinking about this too. Because as they are thinking about the electronic medical record, if in fact there is going to be some way to key off of key words to automatically code something, that's something that I think they will need to be involved with us thinking about.
PARTICIPANT: I was just going to mention that Mike Fitzmaurice was asking me also some of the other countries that have electronic medical records. Do you know if any of them are actually using any of these codes on the electronic records, as opposed to the administrative data? Like the Netherlands or England, some of them that have some form or shape of electronic records, or are doing some work in it?
MS. GREENBERG: You could find out, although I think possibly in the Netherlands.
DR. PLACEK: They have mandated in law that ICIDH be used in surveys and back to work programs, rehabilitation programs. It's throughout there whole system, and it has been for over a decade. That's the old ICIDH of course.
PARTICIPANT: What might be interesting, Mike, is look at the other positive if this is also being included as well.
DR. PLACEK: We actually talked about having a Dutch researcher talk about the extensive use of ICIDH in Dutch culture, because it's just entrenched in every phase, in every institution.
DR. IEZZONI: The Netherlands has a long history of being sensitive to these issues. I guess that is reflective in their coding as well.
Marjorie?
MS. GREENBERG: I just wanted to say in relationship to thinking about possibly a pilot or something related to administrative records, that I don't think you have to -- there are different options. One could be on every -- possibly it would only be on particular patients certain things would trigger it, rehabilitation patients, whatever. And then a standardized attachment could be developed. Although the NPRM on the task hasn't come out yet, it will be soon.
MS. COLTIN: This very issue about like the prosthetic device, this kind of information would be helpful on a request for an authorization.
DR. IEZZONI: I agree. I have been using the shorthand of saying encounter records, meaning to include claims attachments, but I think I haven't been explicit about that.
I noticed Paul is getting ready to head off, which is a good idea. You have a long way to go. Are there any other things that the three of us, Kathy, Paul, and I as lingering subcommittee representatives can really do at this point? I think that we have had a productive day and two hours.
DR. NEWACHECK: It might be useful if there is some way that we could get the other subcommittee members briefed.
DR. IEZZONI: Up to speed, I know.
DR. NEWACHECK: Not just the handouts, but maybe a telephone conference call with the handouts in front of them, if you guys would be willing to do that, Gerry and Paul.
DR. IEZZONI: I think it would be great for Gerry to walk through his exercise, and for Paul to present briefly the kind of the roll out --
DR. NEWACHECK: Sort of where things are now.
DR. IEZZONI: Yes. Can I ask Patrice or staff to organize such a thing.
MS. GREENBERG: Before the June meeting?
DR. IEZZONI: Before the June meeting.
DR. NEWACHECK: Otherwise, we will have to do it again.
MS. GREENBERG: With the three of you participating?
DR. IEZZONI: No. You can invite us.
MS. GREENBERG: It might help to have at least one of you.
DR. IEZZONI: But I don't want to hold up the scheduling, because scheduling things is so impossible. And maybe we could ask Simon Cohn and Kathleen Frawley if they like to be involved too, because the chairs of the two other committees that I think we need to have be involved with Gerry and Paul, to walk through what we have done this.
DR. NEWACHECK: With the handouts in advance.
MS. GREENBERG: Probably including Gerry's presentation from yesterday, the Power Point presentation.
DR. IEZZONI: Yes, which the rest of the committee needs too.
MS. COLTIN: When will we get the executive summaries of this meeting? Because it might be helpful.
DR. IEZZONI: Well, to be honest, we haven't even gotten the meeting minutes from February yet.
MS. GREENBERG: You mean from January?
DR. IEZZONI: Was that from February, the breakout, nor from January. We haven't gotten either sets of minutes.
MS. GREENBERG: Part of the problem is I think that we also have our minutes writer working on these interim reports for the symposium and everything. But we'll look into that. And we could do this one before the other one, although I think it's short. It would be good to have that.
Theoretically we get the transcript within ten working days, and then I think they have 30 days after that to do the minutes. But we are slipping I think on both of those, so we'll check into it. I have been asking about the February, both meetings' minutes.
DR. PLACEK: Before which June meeting are you talking about?
MS. GREENBERG: The national committee meeting is going to be June 20, 21, and 22. The 20th, the afternoon is the symposium on the 50th anniversary symposium for the committee at the National Academy of Sciences. Then the 21st, probably in the afternoon of the 21st I would say that's what you should plan on we would have breakouts then.
DR. IEZZONI: Either way, the National Academy of Sciences meeting is going to be in a room which isn't as handicapped accessible as people would like it to be. Debbie Jackson has been on top of that. So any people in wheelchairs want to come to it, we should inform them in advance, because it might be a little challenging, but it can be done.
That was a great suggestion, Paul. I think let's try to bring the rest of the subcommittee in, and hopefully, Kathleen and Simon up to speed on this. And maybe Jeff Blair, I don't know whether he would like to be involved too, from the PMRI.
So I think for the three of us, we have kind of done what we can do. This has been a very helpful morning, and I thank you, Paul, for driving all the way in.
[Whereupon, the meeting was adjourned at 9:50 a.m.]