[This Transcript is Unedited]
Room 405A
Humphrey Building
Washington, D.C.
Call to Order and Introductions - Lisa I. Iezzoni, M.D., M.S., Chair
Discussion of Functional Assessment Initiative and the Work Plan for the Subcommittee
DR. IEZZONI: Why don’t we get started. Kathy is here but not at this exact moment. We are a little bit late, and unfortunately, people know that I am at two meetings simultaneously so I have to leave exactly at 5:30 because I have to get back to my other one. We have a lot to do.
So basically this is very much of a working meeting of the Subcommittee on Populations. For the purpose of the transcript and for people to get to know each other, let’s go around the room really quickly and introduce ourselves.
I am Lisa Iezzoni. I am chairing the committee right now. And I am at Harvard Medical School in Boston.
DR. NEWACHEK: I am Paul Newacheck. I am a member of the committee and I am at the University of California at San Francisco.
DR. QUEEN: I am Susan Queen. I am a staffer for the committee from Health Resources and Services Administration.
DR. HENDERSHOT: Gerry Hendershot. Also a staff of the committee, National Center for Health Statistics, Centers for Disease Control and Prevention.
DR. PLACEK: Paul Placek. Ditto. Helping the staff.
DR. WOLFSON: I am Michael Wolfson from Statistics Canada. I am responsible for health statistics in Canada.
DR. MERRIWOOD(?): I am Sheila Merriwood. I am hereon behalf of Olivia Carter-Pokras who is staff to the committee.
MR. HANDLER: Aaron Handler. I am senior statistician to the demographic statistics team, Indian Health Service. I am staff to the committee and I am hiring a grade 13 staff position. It closes March 9. If you know anyone, let me know.
DR. FRIEDMAN: I am Dan Friedman. I am a member of the committee with the Massachusetts Department of Public Health.
DR. STARFIELD: Barbara Starfield. I am a member of the committee from Johns Hopkins University.
DR. MATTHEW: I am Carla Matthew. I am here to observe. I am from Westat.
DR. FRANKLIN: Bill Franklin, Westat also.
DR. HITCHCOCK: I am Dale Hitchcock with the HHS Data Policy Office here.
DR. GREENBERG: I am Marjorie Greenberg, National Center for Health Statistics, CDC and executive secretary to the committee.
DR. IEZZONI: Okay. Well, I don’t even know how to begin because it seems like there is this little cloud that keeps raining on this, we are not talking snow, we are talking rain, because every time we try to get started on figuring out what we want to do with this functional status project, something untoward happens and we are not able to move forward.
Just to recapitulate, we were supposed to have a meeting in October that ended up getting canceled because of logistical reasons. We had a meeting here in Washington that was going swimmingly well I thought, on January 24, and January 25 I called Marjorie at 5:15 in the morning, didn’t I, Marjorie? I called Patrice at 5:00 in the morning, and I said, “Look out your window.” We made the executive decision because of snow that we were going to cancel the meeting and we actually were going to be talking on that January 25 date about what we wanted to do for this initiative and it is a shame that we were not able to do that because the first day when Bob came and we had a number of superb speakers organized by Carolyn Ryanson, the other staff to the committee, had really gotten us off on an excellent trajectory in terms of our thinking about this even though some of it was somewhat sobering but we knew we had a lot of work to do.
The momentum has been lost by that and so here we are once again and I thank the Westat people for coming because you were supposed to be a potential, possible subcontractor for us. As you can see, we have had a somewhat stuttering start on this project.
Today what it looks like we will be doing is having a relatively brief reminder for some and new presentation for others about the ICIDH. This is something that we as a subcommittee have been tracking for a while but some new members of the subcommittee have not been introduced to it and we had hoped to do that partly on the second day, the January 25 day but then after Paul and Gerry have had a chance to remind us about that because it has a nice framework about functional status measurement, we are going to try to figure out what we want to do as a committee and whether we want to do anything as a committee on this and we are going to end at 5:30.
So Gerry and Paul, could you tell us what you wanted to tell us in a very clear and concise way.
DR. HENDERSHOT: I am going to do a kind of primer on the ICIDH. Paul is going to talk about activities that are ongoing to revise and test the ICIDH.
What you have on the front page of this cover is the front page or the cover page of the current version, A-2 version of the ICIDH which is undergoing revision. We also put the website address on this document as well. There won’t be enough of these for everybody.
That is a pretty good website. It provides a lot more documentation than I am going to be giving you today. Turn to page two. First off, I want to make a distinction between measurement instruments and classification systems. The ICIDH is a classification system, not a measurement tool. It is designed to take the results of measurement and classify those results in a standard way so don’t think of it as a measurement instrument although it could be the basis for developing a measurement instrument.
What I am going to do is look at it, at a measurement instrument, the National Health Interview Survey, the one I know best, and we will look at an example and sort of work it through the ICIDH and in that process I hope you will understand that the theoretical framework and structure of the classification is how it can lead you to code information from the measurement.
This page from the Health Interview Survey is from the adult sample questionnaire. One adult in the household is selected as a sample person and a self- response questionnaire is administered to that sample adult and this is a part of the limitation of activities. You see a lot of questions that are, many of them, are familiar to you. They have been borrowed from other measurement instruments in the area of disability.
If you look about two-thirds the way down on the page, you will see a question. About halfway down the page, you will see the question AEHS 141 by yourself and without using any special equipment, how difficult is it for you to use your fingers to grasp, carry something as heavy as 10 pounds, push or pull objects like the living room chair. The possible code categories are not at all difficult, only a little difficult, somewhat difficult, very difficult, can’t do at all, recused and don’t know.
We are going to look at push or pull large objects like a living room chair so we get a response to that. Let’s say the response is only a little difficult. So that is our information that we have measured and now the question is how is that classified. The ICIDH is a classification system which should be able to put that item of information from the measurement instrument into a code category.
Look at the next page, page three, this is a page from the introduction of the current version of the ICIDH. This presents a graph or model of the main theoretical components of the ICIDH. It was developed originally to provide a way of classifying the results of health conditions so it is not about health conditions, it is about the results of health conditions but it implies or assumes that there is a health condition underlying the disability.
The consequences of that health condition, the disability, are in this classification seen as having several different dimensions. Most people who thought very much about disability realize that it is a multi- dimensional phenomena and usually come up with two or three dimensions of that phenomena. For the ICIDH the dimensions are first of all on the left, body functions and structure. The negative aspect of that is impairments. That is what is called impairments.
Next in the middle, activities and the negative aspect of that is limitation of activity. And on the way participation in life activities and the negative aspect of that is restricted participation. In other places this is talked about disability at the body level, the person level and the social, societal or community level. So these are different ways of thinking about disability and they are all incorporated in the classification.
Environmental factors and personal factors are also seen as affecting the phenomena.
Next page which is page four, you see the definitions of the major terms. Impairment level, body functions and body structures is the distinctions made between structures and functions for the purposes of classifications and then impairments, activity limitations. You will see difficulties an individual might have in the performance of activities, participation of individual’s involvement in life situations or restrictions or problems an individual might have in the manner or extent of involvement in a life situation.
Okay, we have got a person that has little difficulty pushing a large object like a chair. Of the three dimensions of disability, what does that belong in? I am asking for real.
PARTICIPANT: It is an activity.
DR. HENDERSHOT: It is an activity, that’s right. On the next page, starting page five, is the one level classification of the ICIDH. You see on the first page are body functions and body structure. That is the impairment level and the negative aspect, the next page, is activities and the next page after that is participation.
So these are the chapter headings, the first level of classification in the ICIDH. We have decided already that this belongs in the activity dimension of pushing a large object like a piece of furniture.
So we have got eight chapters. Incidentally, the structure is hierarchical so you could stop at this level so you can do a very simple classification into just a chapter and one of the parts of that, one chapter and one dimension can be the whole classification if you choose to do that level of classification.
In the activities chapter, which, the activities dimension, which chapter would this go into?
PARTICIPANT: Three, four?
DR. HENDERSHOT: It is a little confusing here. Three and four you have to know a little bit more. Movement activities are movements of the body generally speaking. Activities of moving around are vehicular transportation, whatever, moving around outside the house from place to place.
If you go to the next page, page nine, this is the whole detailed chapter on movement activities in the activity dimension so it is four pages long. Those are the movement activities and there are two blocks of activities. They are in all capital letters. The first one is activities of maintaining changing body position and the other block si activities of caring, moving and manipulating objects. So where does this go? Somewhere in that second block. Activities of carrying and moving objects.
If you look down that list which starts on the bottom of page 10 and through 11, where is this going to go. Look on page 12, A370, activities of hand and arm use. Below use if you see down, A3701, coordinate actions of using hands and arms to move one or more objects away from oneself or to move them from place to place.
This is where I would put it. Now, coders often disagree on the codes they arrive at. But that is where I would put it. So this is the process of working down through the hierarchical structure within one of the three dimensions to write the code for the information that you have. That is the code I would assign to this.
It also includes in the structure what are called qualifiers. There is a decimal point after the code number and following that are one or more qualifiers. In the activities dimension the qualifier, the first qualifier is severity. This is what is called the uniform qualifier because the same qualifier is used in all the dimensions and it is simply, you see on page 13, no difficulty, mild difficulty, moderate, severe and complete difficulty. That gives you some words to associate with those and some percent level of function associated with those to help you make a decision.
In this case I said the person had a little bit of difficulty so I would code this as a one, a .1. Then there is a second qualifier which is assistance, whether they need help from another person or an assisted device in doing that.
That is about all I am going to say by way of introduction. I did want to make sure that you, Allan ...
DR. IEZZONI: Allan was supposed to speak on the second day.
DR. HENDERSHOT: Did his paper get into the record?
DR. IEZZONI: I don’t think it did, no. And it looks like it would be interesting. We should, Patrice, we should see if we could get that and distribute that to the committee.
DR. HENDERSHOT: I wanted to urge the committee members to read that paper. It is well done. It raises some issues that are very dear to my heart, and I think that have been mentioned in this committee before, one of which is the use of proxies, whether the proxy or self response and he says what I have labeled page 15. Even as a researcher, most of whose work entails primary data collection, I understand that there is an administrative appeal to using proxy responses. In fact, he says there is some cases where we must use them.
He says, “However, I think we have enough evidence about the nature and magnitude of bias associated with proxy responses for people with impairments and the ability of people with even profound degrees of impairment to speak on their own behalf that we should use proxies only as last resorts.”
I just want to give you an illustration of that but I just did this morning. On the last page of this document, page 17. In the National Health Interview Survey on Disabilities 1984 data, I took two disability question items. The first is do you consider yourself or anyone in your family to have a disability and who is this. And then because of physical, mental or emotional problems, do these persons get help from another person in getting around inside the home and who is this person?
And then I just divided those into those that were given by self response and those that were given by proxy response. The interesting thing here is that whereas, these are all wheelchair users, by the way, in this classification. Those who were, responded for themself, the question of do you have a disability. Eighty percent said they had disability. If it was a proxy respondent, 98 percent said they had a disability. And for getting help from another person inside the home, the self-responding people, 23 percent said they got help. Proxy respondents said 52 percent of those persons got help.
DR. STARFIELD: But these are not the same people. You either give a proxy response or a self- response.
DR. HENDERSHOT: Right. There are things other than proxy, difference between self and proxy that might explain the differences in the report but the point is that there is a big difference in what proxies response is and what self-response.
MR. HANDLER: I have a comment on that. My father-in-law has Parkinson’s Disease and he forgets to take his medicine. He leaves it on the counter, walks away, he walks out with his pajama bottoms on with company in the house. My mother-in-law was responding to a question about his condition better than he would so just because it is not the respondent who is answering doesn’t mean that the answer is more correct. In that situation.
DR. IEZZONI: This is an issue that we are going to be raising if we pursue this initiative. It is who should be the respondent because obviously the major question is should it be the person or the caregiver, the caregiver being a wife or spouse in that situation that you are describing, Aaron, or a doctor, nurse or other healthcare professional. Paul, are you going to say something really brief?
DR. PLACEK: As brief as you want it.
DR. IEZZONI: Please, briefly, because our committee has a lot of work to do.
DR. PLACEK: All right. I have two handouts that will cover my points here. The first handout deals with four beta two training and field testing activities that NCHS is involved in. They are the development of a learner’s manual or training manual for ICIDH-2. This is the four digit version; this is the two digit version that are undergoing worldwide testing right now.
I will talk a little about this tab and give you some coding examples, international coding examples, and say a few words about Code IDH and then talk about our three-city rollout this June of code IDH-2, the web- based training tool and work with professional associations on evaluating ICIDH-2.
The four digit version has around 2,000 codes in it, and it is quite a detailed classification tool but it is easy to use I think. We wanted a learner’s manual for how people might actually learn how to work with it. So it is done. The learner’s version is 300 pages but it incorporated the whole training, it incorporates the whole classification tool.
For example, there is an index of inclusions and exclusions about a 5,000-word alphabetic index so it is easy just to use the index to find your way into the classification and this is just done and this has gone to all the collaborating centers and task forces now so this is being used in some of the field studies. The second item is distab(?). Gerry and I developed distab. I want to give you a handout on that. Distab compares disability across five countries. The U.S., Canada, France, Netherlands and South Africa. We started this activity about three or four months ago and where it has really grown along.
As you can see on the distab heading there, we are looking at 10 different disabilities across these five countries, hearing, seeing, speaking, mobility, body movements, gripping, learning, behavioral factors, personal care and assistive devices.
This handout focuses just on hearing. You can see on the cover there are three kinds of areas where you can capture hearing. B-230 which is a body code 230, hearing sounds, B-230 is the code; A-1101 which is an activity code, listening activity and you can see the three countries that were captured that way in their national surveys, and E-135 which is an assistive device hearing aid.
What we found in looking at hearing questions in all these countries is 42 different kinds of questions that were captured in any one of three domains. Take a look at page two and you will see that the code B-230 in the first column, hearing sounds, captures hearing in these four national surveys from these specific questions so it is an example of how we can capture hearing from really four different questions but under the same code.
DR. STARFIELD: Just a clarification. What are the lower case a, b, c, d?
DR. PLACEK: Yes, b is body code, that is like impairment; a is the activity code, which is disability if you want to think of it that way, what you can and cannot do.
DR. STARFIELD: It is actually in a different part.
DR. PLACEK: Yes, social participation at A and E is environment. There are four different sections.
DR. STARFIELD: And B means body, A means activity.
DR. PLACEK: Yes. It used to be called impairment but the idea is to get to neutral terminology. That is why Body instead of Impairment.
Pages three and four have about 20 different examples of specific questions and how they are, in fact, quoted by ICIDH-2. You can see the first three, the first A, are you able to follow a conversation, is covered as A-1101, activity 1101. Are you able to have a conversation is coded as a B-230. Do you use a hearing aid is an environmental factor, a facilitator, E-135.
They haven’t had any problem in capturing and coding information. This was really one of the goals of Distab was to see if ICIDH-2 can capture back-coded survey information and as many different ways as there are to think up disability questions, they are there in these five national surveys in these countries. So so far we have not had a problem coding information but we are still into the project.
So I think I will stop there and just mention a word about the last two activities that we are involved in.
The third one is code IDH-2 which is web-based training on ICIDH-2 and that will be ready in about 10 weeks and it will be on the web for anyone to use worldwide. And it is essentially an interactive training tool that people can use to practice coding on ICIDH-2 and learn how it works.
The fourth activity is the three city rollout we are planning in June. We are planning to focus on bringing in the professional associations in three two- day workshops. One will be in Pomona, California. The other one will be in the Washington, D.C., area, and the third one we are looking for a middle city, maybe Minneapolis. We will use PC’s and code IDH-2 and do coding and get systematic feedback from professional associations on code IDH-2. I am going to do it with studies one, two and three, and if you look at the second page of this handout there are eight studies or eight protocols that WHO has endorsed. We are doing the first three, the so-called mandatory protocols.
The first one, study one, is translation and linguistic analysis. Fortunately, we are don’t have to do translation because the patient document is in English but we should do some linguistic analysis. The second one is basic questions, and the third one is coding. That is what we are going to focus on. Coding using code IDH-2 as the total.
So that is what NCHS is involved in this year. Is that brief?
DR. IEZZONI: Yes. You two have been very gracious and I thank you because you obviously worked on preparing presentations for you and I very much appreciate it. I think it has been informative for the committee. Barbara, I know you were one who had been at presentations and ICIDH is an interesting system. I think if we had had the presentation from Don Lawler which was supposed to happen the second day, you would have heard Don and, correct me, Jerry and Paul, if I am wrong, I think you would have heard Don propose that ICIDH codes be included on physician encounter records.
I think probably the B codes, the body codes, did he want the A codes, the activity codes, okay, the activity codes were the one he wanted, and we would also have heard from Gretchen Swanson who would have talked to us a little bit about a project out in California run by Blue Cross using ICIDH coding and so it is too bad we didn’t hear either of those presentations. Thank you.
DR. PLACEK: Sure, and Gretchen Swanson, by the way, with a colleague, wrote the learner’s version and is writing Code IDH-2 and will be involved in the rollout in three cities.
DR. IEZZONI: Okay, so we would have heard from one of the leading experts in the country on this.
Okay. In the next hour and 15 minutes, the committee needs to make a final decision about whether we want to do an imitative on capturing something about functioning in administrative health records. Let me just underscore that this is not an initiative about disability. Everybody has a function and this is also not a project about collecting data such as the NHIS collects or NHANES collects detailed clinical survey type of information. This is about collecting this information in a core data set as we had originally proposed for administrative records through the NCVHS core data elements project many years ago now.
Let me, for the case of expediency pose a three tiered straw person to bat at in terms of what our options are. One option is based on what we heard on January 24, we run screaming in the opposite direction and we say this is a great idea, we love the information but it is simply not ready for prime time, we don’t want anything to do with it. Seriously, there are such huge practical consequences that it is not even worth spending the committee’s time on this but we do want to write up the minutes, say it is an important topic and move on and come up with another scope of work. So that is option number one.
Option number two is outlined by Barbara Starfield in an e-mail that I think was forwarded to all of you. This is based on something that Bob Kane said in his initial presentation on January 24 that, in fact, if you ask people a global question about their health status, that they answer in a way that is useful. Nobody really knows whether the information is valid, accurate, whatever, but people have found it to be a useful piece of information and Barbara suggested two forms of an encounter-based question.
The first is how do you assess your health at this point in time, now? And the second question was how do you assess your health overall in the general? So taht is the second option.
We could have an initiative that just focuses on those possibilities or that possibility and get information from the field about how people would feel about that.
DR. STARFIELD: And there was also a second recommendation for a subsequent strategy that was not a core data element.
MR. HANDLER: Isn’t there going to be a question maybe on a sample basis on the 2000 census similar to that? Some type of disability question.
DR. IEZZONI: There is. I think that there is, but basically option number two is that we as a committee pose the form that we might want this functional status information to be contained in and then go out to the field and ask people to react to the specific form.
Then option number three is opening it up and saying we as a committee want to hear from you what you think should be the form of functional status information. We recognize that it has multiple dimensions, what might be the dimensions that we might want to think about and just really open it up to hear from the field about how they feel about measuring functioning on practical consequences, the privacy consequences, the confidentiality consequences, a person’s own responses to it and then also maybe from some experts about what form should that question take.
So those are what I see as the three options. Number one again being we don’t do anything. Number two being we do something but focused on a very specific way of collecting this information that is brief. And number three being that we open it up and just try to get as much insight as we can from potential users and providers in the field about what we should be capturing when we say we want to measure functional status. Marjorie?
DR. GREENBERG: And number three is sort of what you originally were setting out to do.
DR. IEZZONI: Number three is sort of what we were originally setting out to do, yes.
DR. GREENBERG: I think number two, Barbara’s suggestion that Paul had made a comment that I concurred with and I think Barbara did actually, too, is that that is not really getting at functional status. In fact, I think the committee recommended in the core data elements two different elements. One was health status and this really gets at that and the other was functional status.
DR. IEZZONI: I mean, we would have to work on the language but the basic point is that we ask people about their health function. Health is an appropriate word given the way that Barbara has phrased these questions and I think that that is what Bob Kane was getting at, too, in his global overall health status because it is a question that is in the core NHIS.
DR. NEWACHECK: I wanted to introduce another option, maybe it says subcategory of two. Two is the only one that is a specific recommendation. Personally I think, I am not sure how valuable that would be. I would take it over nothing but given that it is such a broad question, I am not sure that it would be that useful. But I wonder if we could add to that as maybe option 2-A would be using the ICIDH because it is on the table. I see lots of problems with it.
DR. IEZZONI: But remember, Gerry reminded us that ICIDH is not a measure, it is a classification.
DR. NEWACHECK: Yes, I know. So you have to do something to collect the information to put it into ICIDH.
DR. IEZZONI: So classifying the activities. Or what were you thinking?
DR. NEWACHECK: Well, I am thinking, I assume that when you use ICIDH there has to be some examination of the patient or some information on the patient that is used to classify them and whatever that, whatever was intended by ICIDH I guess.
DR. STARFIELD: Every encounter? Do we ask what will happen every encounter?
DR. IEZZONI: That is an excellent 2-A and why do we –
MR. HITCHCOCK: That occurred to me somewhat earlier that I want to see a parallel with something like DSM-III where you have got the diagnostic and interview schedule that was born in DSM-III and allows clinicians to look for certain traits and use the diagnosis based on using the DIS based on DSM-III criteria. There was a parallel here.
The other point was that of the three options, the third one is the most expensive one. We have the biggest budget implications.
DR. PLACEK: Just a comment here. A clinician doesn’t need to know even that ICIDH-2 exists to enter functional status information. Just like many physicians don’t know about ICD-9 and -10. And still there are 20,000 cause of death codes assigned from what they put down on the death certificate so a physician could put down certain terminology and the way that could be coded by literal entry and just a computer match code and it is done in about 20 seconds, a record on mortality information.
DR. IEZZONI: You are very sweet. You are assuming that doctors even think about these concepts and even write anything down. I think you might find, and I am sure Gretchen will tell you this too in your pilot study that doctors would have to be trained to even think about these concepts and begin to write anything.
DR. PLACEK: Then you focus with the lead questions and the areas to focus on.
DR. IEZZONI: Yes, and one group that you are going to hear from in this initiative was physicians to see what their response will be to collecting any data.
MR. HANDLER: If you look at the top page of this distab, there is 10 different types of disabilities that are listed and then there is all kinds of subcategories and it is very complicated when you look at all the little subcategories. What if you started out by only looking at one, two, possibly three of these 10 and see how that would work and then expand it later.
DR. IEZZONI: Remember, the way that I articulated this at the beginning is that this is not a disability initiative. This really has to be something looking at, I am going to use that global term, of the entire population and so if we used an ICIDH approach, would it be perceived as a disability?
DR. GREENBERG: Actually the whole thing about ICIDH is it is considered an entire population.
DR. IEZZONI: The change in the wording would take physicians some getting used to as well. I personally find it took some of my getting used to. So did the committee members feel that this is a useful way for us to discuss for the next half hour what we want our initiative to be? Does anybody have any comment before the committee starts kind of hashing this out among ourselves?
DR. STARFIELD: I just had a question. Did you have a chance to talk to Andy Vann?
DR. IEZZONI: I did.
DR. STARFIELD: Because he was originally, I mean, I assume the reason for number one is we heard some pretty sobering things on the 24th before the snow fell.
DR. IEZZONI: We did.
DR. STARFIELD: Although on the other hand given what the committee has heard not only during the past developing its recommendations but more recently like from HCFA and AHCPR or HRQ, there is a great desire for functional status information. It could be that the role of the committee is to explore this and say it is not ready for prime time but I guess after one day of hearings to abandon ship is sort of curious to me but I do agree that it is sort of negative and I am wondering what Andy’s spin would have been had he been there to give the presentation.
DR. IEZZONI: Well, it was very interesting. I had a call with Andy I believe it was last Thursday. He is a researcher. It was very challenging to keep reminding him that this was something that would be on administrative records because he kept talking in terms of designing questions and forms and his own work which has been heavily oriented towards capturing functional status information in impaired populations, in elderly people in particular.
He is also a very enthusiastic person and was not willing to abandon this at this point. He is definitely interested in pursuing this and he was somewhat agnostic about the latter two choices that I just presented. He didn’t have a strong preference about those latter two choices but I think that as we began to talk about the practical consequences about opening up the functional status measurement to the multiple dimensions, we talked a little bit about pediatrics and all the measurement issues in there. That once we started talking about the practical consequences of that, that he began to understand that for administrative records that this would be a really major impediment to get over.
I forget who the 24th, but somebody on the 24th told us how many Medicare outpatient visits there are. Does anybody remember what that number was? Because somebody said, okay, there is X hundreds of millions of outpatient visits for Medicare beneficiaries every year and if it only takes 20 cents or just a nickel to capture this information, look how much that is going to cost. So that was a very sobering figure and he and I talked about that a little bit.
DR. NEWACHECK: It could also be done just initial assessment to resuming or something like that.
DR. STARFIELD: In fact, that was what my second suggestion was was that when we talked, this is the health status be on the encounter data but that for the enrollment data or whatever it is that we do an intake kind of thing. You have got three things moving around here. We have functional status, we have got the empowerment and handicapped and disability. There are instruments for health status. We have got tools for the disability one that feed into ICIDH.
But what are the tools for functional status that are available? We have got health related quality of life but that is not functional status. What are existing functional status instruments? I mean, I can’t offhand think of any.
DR. NEWACHECK: I can describe a few. They are ICIDH based but –
DR. STARFIELD: That is disability and impairment. We are talking about functional status.
DR. NEWACHECK: There is an SF-12.
DR. STARFIELD: That is health related quality of life.
DR. IEZZONI: There are people who disagree with that.
DR. NEWACHECK: There is a 12 and a 36 ICIDH version. There is an ICIDH checklist. That is not short. But there are short tools around being developed.
DR. IEZZONI: AS a matter of fact, this morning I was at my MS committee at the Institute of Medicine and we had Barbara Vickery who is a neurologist from UCLA come in and talk to us about functional status and quality of life measurement in MS.
DR. STARFIELD: How do you distinguish one from the other?
DR. IEZZONI: She distinguished subscales. She said that there are all these subscales within the global scales. Some of which you can say are more kind of functionally based and others of which are more kind of quality of life based. But being very explicit about the nomenclature without looking at the content of the subscales is not that much of a productive discussion. You really have to look at the content of the subscales to say what is it that they are actually measuring or trying to measure and then you can begin to. That is why I don’t think, that is why I am perfectly happy to concede language today because I feel like I am much more interested in the content of what we are looking at.
DR. STARFIELD: I was just looking for a prototype that we can say, this is sort of it so we would have to decide whether to go after it.
DR. IEZZONI: But I think that actually Paul raising the ICIDH is a nice counterbalance because basically what Paul is saying is use whatever the physicians write in the medical record, or other care providers and code it the way that ICD-9 CM diagnosis codes are coded. That is a very different concept than trying to generate new information.
DR. NEWACHECK: It could also be based on generating new information.
DR. IEZZONI: But Marjorie just made the point that ICIDH is not just disability.
DR. STARFIELD: I mean, could we think of ICIDH as functional status?
DR. NEWACHECK: I think it is much broader, yes. Functional status plus. I think it has a much broader application. I am more concerned with the practical problems of making it happen but I think in an ideal world it would be wonderful.
DR. IEZZONI: I talked to Gerry and Paul about this. I have always been mystified why our country is so backward in even thinking about using this classification system because Gerry and Paul, there are countries that use this actively, right? Michael, you are from Canada. Do you guys have a discussion about ICIDH using it?
DR. WOLFSON: Indeed, we had a very active discussion as Paul and Marjorie will know. I am just biting my tongue.
DR. IEZZONI: Can you tell us some of it?
DR. WOLFSON: I should ask you guys what you think, but we are not at all comfortable with the way ICIDH has been evolving so I am interested to understand how much you are taking the current beta-two classification as given. There are several concerns that we have. One is the structure of the classification. Paul picked a not too bad example about pushing a chair but you look under the activities about driving a car or driving a mule as the case may be, there are some curious things going on in the way it is classified. That is a concern that a number of countries, maybe Canada much more than the U.S. but there seem to be feelings of concern. We are not using it.
A couple of other tidbits just to throw out. I think we are worried about how much it would cost to collect functional status information as a routine item on all of our health care administrative records. One option that sort of, in the back of some folks’ minds is to have smart enough software which, software is not a problem but it is the imagine that will do it on a sample basis as you need it, not everywhere. My sense is that physicians have spent a lot of time studying in the ICD framework so when they write down a cause of death it is easy to code. There would have to be a considerable amount of education to, additional education, for folks to write down a functional status description in free- form text that could then be captured in the same way that cause of death is now.
We have done some empirical work and probably lots of studies here in the U.S. which I am not familiar with, that suggest that adding functional status, we did a record linkage of our health and activities limitation survey from 1986 to the Manitoba health care records, it clearly adds explanatory power to things like length of stay and entry into nursing home compared to the ICD codes and complexity or DRG type classification structures. In fact, one of the things I have not heard anybody say yet, you have probably already discussed it, is why would you want this? What are the purposes for which you would go to the expense of putting it on there? Is it for individual patient care or is it for population health assessment?
DR. IEZZONI: It is the latter case.
DR. WOLFSON: In the latter? Then you could do it by record linkage or by sampling. You don’t need to do it on the universe basis.
DR. NEWACHECK: We talked about three potential purposes I thought. One was setting payment levels for risk adjustment purposes. One was quality improvement purposes and the third one was more epidemiological statistical purposes which would be more, you could do that by sampling but the other two, if you wanted to use it for setting payment levels or risk adjustment or quality, you would need more information. Probably more than what you would get from Barbara’s suggestion, too, I would think. So then you need something like the ICIDH if you wanted to pursue all three of those.
DR. GREENBERG: And wasn’t it, he was particularly sobering about using it for payment I think.
DR. IEZZONI: You know, I think the research on that is plus-minus. I don’t think Bob was thinking about capitated payment. I think he was, his whole area of research has been nursing home. And so it is not clear to me that he was really talking about setting Medicare payment levels the way that Medicare is required to do under the Balance Budget Act.
MR. HANDLER: I have a practical question. If you are thinking of having a question or series of questions on functional disability added to administrative records, how many different questions are needed to get to the detail that you are in need of because it seems to me you have one question and depending upon how the person answers that question, you will have a second question or a scoop pattern and a second question and a third question. And to get to exactly what you are looking for, how much space do you have on an administrative record to do all of that?
DR. STARFIELD: What do you mean by administrative record? You mean a clinical record?
MR. HANDLER: I don’t know. What is the vehicle that this would be put on?
DR. STARFIELD: Can I come back to Michael and ask, what in effect, are you doing about it? Are you just dealing with this only on the basis of surveys? Are you thinking about it, incorporating it into the clinical record?
DR. WOLFSON: It is too early for us in terms of putting on a clinical record. We are just about to go through one change in what is called our discharge abstract and we have got an Amcare classification system that is rolling out now but over a longer time period –
DR. IEZZONI: What is the Amcare classification?
DR. WOLFSON: Ambulatory care which is basically going to do emergency room and day surgery.
DR. GREENBERG: Isn’t there a rehabilitation data set that they base it on?
DR. WOLFSON: Yes, that is right, too. But I don’t know that that is, there is what, the MVS that CHI is using? It is not ICIDH based.
DR. IEZZONI: That’s right. So, Paul, based on what you just heard from Michael, –
DR. NEWACHECK: Those are practical concerns that he has raised. I still feel like conceptually it is a great idea but I would like to hear maybe from Paul or Jerry about the other countries that are actually using it. How do they get the raw data that goes into the classification scheme? Is it based on some kind of assessment, standardized assessment of the patient?
DR. PLACEK: It is mandated in industrial law that it should be used in social welfare programs and in health programs so it is the new system. I think when it was, you know, you addressed it, how could this thing be around and the U.S. not use it? It wasn’t invented here. It was written by a British physician and then I guess the next translation was a Dutch translation and that is how it wound up quickly being implemented in the Netherlands. By that time I think American disability programs were pretty well in place. The definitions were written by politicians and I think that is kind of the short history of it.
DR. STARFIELD: But it is social welfare, not health. Physicians are not collecting it.
DR. PLACEK: I don’t know. It is broadly used across the professions. When the Dutch do an evaluation of these various drafts, it is evaluated across the professions, just incredibly, in incredible detail. We have not done that in this country and we won’t be doing it until really we try and do it in June. But one of my points about our bringing of professional associations to look at it in this rollout is if the hearings do proceed on this topic, is to get people who have had a look at it from various professional viewpoints to give you feedback after they have gone through this web training and then they will see from their own discipline whether it will capture information and how much trouble it is and how good a job it does.
That would be a good time to hear from professional associations is after that. If you get the very people who are involved in the three-city rollout.
DR. NEWACHECK: Are there any people form WHO that come here routinely who could talk with us about how it works?
DR. PLACEK: Well, yes, we could possibly get someone.
DR. IEZZONI: Teleconference.
DR. GREENBERG: We had talked about bringing somebody over for one of them
DR. PLACEK: WHO people come over a number of times a year.
DR. IEZZONI: Paul, are there any countries other than the Netherlands that are using this?
DR. PLACEK: It has had a lot of use in research applications but not much in national disability service.
DR. IEZZONI: Again, let’s stay away from disability.
DR. PLACEK: A lot of research applications. There are 2,000 references that pertain to its use. That is the old version, 1980, that is still around, so there is a lot of work that has been done in a number of countries.
DR. GREENBERG: Doesn’t Gretchen actually use it? The Blue Cross –
DR. IEZZONI: Yes, but Marjorie, Gretchen seems to be an industry in and of herself. Can’t we turn off the tape for a second?
[Off the record]
DR. GREENBERG: What is SSA’s plan?
DR. IEZZONI: Carla, do you know whether SSA, the Social Security, ICIDH has not been used by Social Security Administration?
PARTICIPANT: No, not yet.
DR. PLACEK: No, but they have funded three studies.
PARTICIPANT: Oh, I’m sorry. I thought you were asking about is it being used in a disability evaluation survey. They answer to that is no. Beyond that, I can’t speak for Social Security.
DR. PLACEK: They are not using it as a program right now but they are funding research on it.
DR. IEZZONI: Okay. Cathy and then Michael because you look like you are biting your tongue again and people want to hear from you so you have a minute to figure out what you want to tell us. So, Cathy?
MS. COLTIN: One of the things that I keep coming back to is the sort of practical, feasible kinds of questions but also looking at those in the context of how would you see the information? How would you justify the cost of collecting it?
When we started this project, we were very, very focused on administrative data, administrative transactions so if you look at what the options are for administrative transactions, you can talk about collecting it on the enrollment transaction. There you get into the issues of somebody can enroll in a health plan in 1977 which is when I enrolled in mine, and I haven’t filled out another enrollment form since so how would you collect it in the interim? There would not be another transaction. Plus there are all kinds of issues that have gotten raised about the fact that you could potentially use that information in a discriminatory fashion if you collected it on an enrollment transaction, the same issues that we heard about when we talked about race and ethnicity being collected on that transaction.
So in my mind I say enrollment transaction, I don’t think it is really feasible or practical to think about that.
So then you go down and you say what about the claim transaction. And then you get into the issue of the cost because of the many millions and do you want to collect it at every office visit or just hospital discharges or just transfers between facilities? What are the conditions under which it would be useful? In order to answer that you have to say how would you use it? Why would you want to know? And then at what points would it make sense to collect it? I don’t think we have gotten to that point of saying why. How would we use it in each of those scenarios?
DR. IEZZONI: That is one of the things we are trying to do with bringing in, the second day of the hearings we were going to have Lisa Simpson from AARP talk about how they might use it, people talk about using it on calculating payments and so on.
ME. COLTIN: The other thing is we often stop with enrollment and claims. There are other transactions, administrative transactions. One that might be of interest is referral and authorization because that is the one often where the issues of medical necessity and appropriateness come up and where questions do get asked about the justification for durable medical equipment, for referrals to rehab, for things where there might be a larger population for whom this kind of coding would be relevant as opposed to in the general population and where it might be less cumbersome or make more sense to think about collecting the information so I don’t know.
I am just saying we need to look at all the transactions and say where might it be appropriate, on what kind of transaction and how would it be used and what would it cost.
DR. IEZZONI: Kathy, those are all the questions that we would have to address if we continue this discussion. Absolutely you have outlined them beautifully as you always do. The question is, do we continue talking about this in what, shall we put any parameters around this or should we do, as Marjorie identified as our original conception which is go out in the field and hear the full panoply of ways that people might think about?
DR. GREENBERG: That wasn’t it. It was basically what you had originally.
DR. IEZZONI: That was my original proposal, yes. Michael, did you have a comment?
DR. WOLFSON: Yes. First, I and I think most folks in Canada are very keen to have a reliable and internationally agreed classification system for functional status that we can use, both in our health survey program and in some sense to be determine in our administrative data program. Too, ICIDH is pregnant with possibility. It is the thing that is furthest advanced that has any chance of being internationally comparable but I would observe that there are four things going on in WHO Geneva. There is ICIDH but there is WHO desk, WHO qual(?) and the global burden of disease. There are no, all within the same part of WHO Geneva but they are not mutually consistent so it is not clear where all that is going to come out, and, as I said before, we do have some concerns with the concurrent structure of ICIDH.
The third bit is, it sounds like what is practical is something that is short and the ICIDH has not been designed as, I guess Gerry said right in the beginning is it is a measurement. Moreover, it has not been designed to have a short form and a long form and it would really be nice if we had something that had those properties.
Last, I can’t resist as an anecdote, I have a colleague who did her Ph.D. thesis on measuring functional status. She compared the way it was assessed by discharge nurses from an acute setting and intake nurses in a long term care setting. The disparities about the same person within a space of a few days and the way things were coded were not trivial.
DR. IEZZONI: Yes, not surprising to any of us I think.
DR. WOLFSON: I am allowed to make a gratuitous comment perhaps. I think it is great stuff to try to do something with.
DR. IEZZONI: Can I just ask you to draw that out a little bit further. Have you made your explicit concerns about ICIDH known to WHO and is there a plan in place to come up with a variant version of it? What is the process?
DR. WOLFSON: I have certainly made it known, and it is not clear what is going on. To be frank around the table, part of the complexity as I understand it is a fair amount of the ICIDH work in Geneva is funded by various U.S. organizations so that the folks who are keen on ICIDH within WHO Geneva are not entirely beholden, shall I say, to other things that are going on.
DR. PLACEK: No, I don’t think that is a fair comment. In fact, the United States funded Janice Miller to be a member of the writing team and there was not a U.S. member of the writing team. And in fact, another member of the writing team was a Canadian, Jerry Bickenback. So I think the writing team was wholly slanted by Canadians and not at all by Americans. And then the other top classification specialists I think, Sumya Chatterdy(?) and the other Indian gentleman, so I don’t think it was slanted toward U.S. interests.
DR. IEZZONI: We will let Michael rebut that and then we are adjourning.
DR. WOLFSON: If there is a whole history which I don’t fully understand, but it is a concern about just how this is going to play out in WHO and part of it can be, will be substantially influenced by the kinds of decisions made here and the kinds of studies that the folks are doing. There is another pre-test being done or test part of the evaluation being done in Canada. It has to do with why are some things put under activity and some things put under participation. It may be that the leaves on the trees are all right, it is just the leaves are on the wrong branches and it may be that with some patching up, the structure can be made useful for multiple purposes.
DR. GREENBERG: I think it really is that AP, the boundaries between activities and participation that the Canadians have had the most concerns about and the U.S. researchers have the same concerns and we have the North American Collaborating Center that includes both the U.S. and Canada and we have made these very clear. As Michael said, one of the beta tests, beta-2 test projects is specifically going to look at that and some other countries are planning to do parts of that. There is some researchers in the U.S. taht might as well, though I don’t think anyone is going to do the full study that they are doing in Canada.
This is a major period of time right now of testing so the hope is that we will learn from these pilots and the beta testing and that will feed into the fall, into the feedback to WHO and then the classification will be finalized for consideration by the World Health Assembly by the end of December. So this is a very fluid time at the moment. There are incentives and disincentives and some people would like to delay the whole process for another few years but I think the environment at WHO, et cetera, is to move this forward but it can always be modified as well.
I think that all of this is out in the open and is being looked at and so you don’t, you are not about to sign on to something that is going through revision at the moment but conceptually I think for the most part there is very broad acceptance and Canada as well, it is my understanding with certainly the people at CIHI of a general model and generally what they are trying to accomplish, the importance of, but the main contribution actually, a major contribution of the U.S. and Canada was to flesh out the participation dimension and also to make sure that there is an actual classification for the environment.
DR. PLACEK: Two years ago, if we had been having this discussion, that would have been the discussion. How can we finish fleshing out the social participation dimension and should there be an environmental modifier or not. Those questions are now settled. Now we are just dickering about the boundaries between body and activity and should these chapters, do they belong here or there and then also developing additional modifiers so there are already modifiers, for example.
But what our deliberations are about shifts from year to year. Early on it was over which country would write impairments, now body, which country would write the section on activity, was disability; which country would do handicap, now social participation and environment. That was the North Americans who got social participation and environment so the North Americans who worked very hard on developing social participation and environment basically got just about everything they wanted in that arena in a general sense. The fact that it is there in the classification.
DR. IEZZONI: We have got about a half an hour left, and it is kind of getting at that terrible low energy time. I can kind of see it. And just looking at my colleagues and everybody around the table. We need to reach a decision by the end of the next half hour so let me try to recap what I am hearing and people should leap in.
I don’t hear people advocating that we just abandon this entirely. Do committee members agree with that?
DR. STARFIELD: What are we talking about, the second part?
DR. IEZZONI: No, doing something. I don’t hear that we should just run screaming in the opposite direction.
I also don’t hear a lot of discussion for kind of the full blown gathering information from the field about what are the dimensions of functioning, how might we go about measuring it, what would be the responses of various constituency groups and what would be the responses of the people who would have to provide the data. I also don’t hear a huge amount of enthusiasm for that.
Is that an accurate kind of –
DR. NEWACHECK: We didn’t really talk about that very much.
DR. IEZZONI: No, we didn’t, but the fact that we didn’t is what is telling me that there is not enthusiasm for it because by omission I figured, is that an accurate kind of read of the committee?
So I think that it boils down to option two going either the direction of trying to identify a specific question or set of small number of questions and use them as Barbara suggested or talking about the classification again. This is not a measurement issue. It is a classification issue. And looking at ICIDH.
There is a lot of things that we could do. It would be great to have Michael Livitz and people from other places that have really looked at ICIDH go through the classification and try to understand what it is that people like about it, what it is that people don’t think about and it would also be good, I think Marjorie, I was going to ask you, if we coded ICIDH codes for, let’s just take a straw person example, for at least one encounter a year, there is no place on the current encounter standard for it to sit.
DR. GREENBERG: Well, there is functional status.
DR. STARFIELD: Well, there is functional status on the 835.
DR. IEZZONI: On the 835?
DR. STARFIELD: ON the 837 rather.
DR. GREENBERG: What do they put in it?
DR. STARFIELD: It is not specified.
DR. GREENBERG: I am not sure what is on the 837 but actually what I thought you were going to say when you said about referral on certification, I hadn’t thought about that but was the claim’s attachment. You can do it on every patient but if you have a kind of a core set of questions or measures or information you wanted on the subset of patients, the appropriate vehicle for that would probably be a claims attachment. It also gives you a little more flexibility. I mean, I think if you are going to talk about getting something on everybody, you probably the idea would be to collect it on the encounter. It would have to be very minimal.
DR. IEZZONI: I know. This would be another, a discussion for another time that we really don’t have time for but I would be quite concerned about limiting it to people who get specialist referrals or referrals. It is not population based. It would be a very biased sample.
DR. GREENBERG: But you might pick some other criteria.
DR. IEZZONI: But we might have to pick some other way to get a sample rather than the complete pouplation. So let me just poll committee members around the table. There is one, two, three, four, five of us.
Let’s say that the two options are having more investigation of ICIDH coding and the other option is to have more investigation of a specified question or two as Barbara has suggested.
DR. GREENBERG: They are not really mutually exclusive, are they?
DR. IEZZONI: I think that they are mutually exclusive for the following reason. ICIDH is not a measure, it is a classification. It is assuming that there is already some other information out there that you can classify from.
DR. GREENBERG: That is what I mean, if you were talking about collecting a few pieces of information. It is depending if they related to functional status you could then classify them by ICIDH potentially.
DR. STARFIELD: I wasn’t proposing them as mutually exclusive. I was proposing that we do something that is doable.
DR. IEZZONI: I think those would be two very different things though because I think if we go the ICIDH route we would get into all the kind of international politics, the practical, the actual content of the classification. We would be going through the book. We would all have to get the little red spiral bound books and really get to know them intimately which is not a bad thing, I actually have two copies of it and I refer to it periodically. Paul, did you have a comment?
DR. NEWACHECK: I just want to clarify this issue or ask you to clarify the issue of measurement versus classification or in classification. It strikes me that ICIDH is not very useful if it is only classification. There must be in the planner’s minds at WHO or somewhere the idea that there would be some way of at least a semi-standardized fashion of measuring the underlying health issues that are going to go into that classification. If those two don’t come together, that is, if we just were going to talk about classification and not how to measure it, then I think it is a pretty limited discussion and I am not sure that it would be as much interest to me.
DR. IEZZONI: Well, Gerry made the distinction in his presentation, by photocopying the first page which is the measurement questions from HIS and then going into the classification, he and Paul are right that there is a measurement approach that keys off of ICIDH that I think you all sent to me. It is a little bit more cumbersome. It is actually a whole list of kind of questions about different specific functions that people can do and it is quite, there was a full page and it was tiny print.
DR. NEWACHECK: And that is what would be used as an assessment tool?
DR. IEZZONI: No, it was kind of a first rule.
DR. NEWACHECK: It’s a checklist.
DR. IEZZONI: It is a checklist, yes.
DR. NEWACHECK: That was called the ICIDH checklist.
DR. PLACEK: So a provider would look at that and kind of think about those items and then do the ICIDH coding after that so it is sort of a guide.
DR. STARFIELD: Write something down and then it would be coded.
DR. PLACEK: Right.
DR. STARFIELD: Were you proposing that the NHIS questions were enough to make a classification?
DR. IEZZONI: No, he was trying to draw a distinction between what the measurement was like.
DR. STARFIELD: But the checklist is a sort of a measurement checklist or what?
DR. PLACEK: It is a set of prompts to identify areas of body function or activity that might not be working well.
MS. COLTIN: I am not crazy about either of those options and what I would find more useful would be to take a look at defining the need. What is it that we need a functional status measurement for? What kinds of activities are we trying to support with it?
I know they were the three broad categories but I am talking about something more specific than that, evaluating new technologies.
DR. IEZZONI: That was section three.
MS. COLTIN: But not independent of hearing from a lot of people who have developed specific systems. Independent coding systems, just coming up with how would we want to use it, what would be the ways we would want to be able to collect it and what would be the characteristics of a system that would meet that need?
DR. IEZZONI: That was exactly option three.
MS. COLTIN: And then stop there at this point because I am not clear that any of the systems out there are ready for prime time yet to meet that need but at least we would have developed some sort of a framework or a tool that could be used to evaluate them as they begin to approach a point in time when they might be useful.
DR. WOLFSON: Just to quickly pick up on that, if the objective of doing this is, for example, cost effective in its evaluation or sensing technology then the market gold at all, form the Institute of Medicine a couple of years ago, has gone through in detail what the desiderata at least are of the kinds of measures that one would want to use.
MS. COLTIN: But that might be one of a dozen purposes.
DR. IEZZONI: That was option three in my original conceptualization of what this whole initiative would look like was exactly that. Paul, you are always so good at coming up with the right thing.
DR. NEWACHECK: I wanted to get back to the active ICIDH question again and that is we are all kind of pessimistic about its practical limitations and we like the concept but we think it might be very hard to actually do in practice. I think if we did, if we spent several months taking testimony and hearing from people and really understanding how ICIDH could work or would work, and decided at the end of that that it was a mistake or wouldn’t ever be feasible, that would be a major contribution. So I don’t feel like it has to be workable to doing the study. That is, if we found out that it doesn’t work or is just too difficult to implement, that is a good contribution, too, I think.
DR. IEZZONI: I think you are probably right about that. It sounds like Canada has gone through that process in a sense.
DR. WOLFSON: Very narrow. We have not had testimony.
DR. IEZZONI: But let me just ask Paul and Gerry because it sounds like there is a bunch of stuff that is about to start happening in June with your rollout and the beta testing taht if it were six months from now, that would be a great idea so one of the things we could do is come up with a different initiative for the next couple of meetings that our subcommittee has scheduled and then six months from now go back and say, okay, let’s look at ICIDH and let’s gather testimony from people in the field. Let’s bring in some of the international folks. I think that might be a lot more productive.
DR. GREENBERG: Yes, I think it might be premature to do that right now.
DR. IEZZONI: So that is a very concrete proposal is to think about our subcommittee focusing on something different for the next couple of meetings.
DR. GREENBERG: Could you do, without it being totally open-ended, but could you do a meeting or two between then and now to address some of what Kathy was talking about?
DR. IEZZONI: Frankly, Marjorie, that is what our first meeting is trying to do. Kathy and I worked with staff and Susan, you can corroborate this, to try to come up with who the end user is, different end users would be. We tried to get people from the quality field, people from the reimbursement field.
DR. GREENBERG: We did not hear from some of them actually.
DR. IEZZONI: We did hear from some and we didn’t hear from others because there were some that were scheduled for the second day that we didn’t hear from. You were very kind. You gave recommendation to staff about some people that we never were able to get hold of.
You know, I think that that is fine. I think, Susan, you can correct me, because you worked most closely with Carolyn on this, but we were getting down to a level where it wasn’t clear who else, who we were going to be able to get. That we were really working very hard to try to find the people to come in and speak to us about that and we were not, I mean, we had a lot of phone calls about this and it was very difficult.
So I feel that if we can write up, I mean, it is a shame that we didn’t have the second day. Maybe what we can do is have a meeting in April which we already have scheduled and try to bring in the people who were going to have on the second day and have everybody put their heads together and try to come up with more people that we could bring in to try to get at those issues, Kathy, that we were really trying to get at and also maybe get a little bit more detail than I allowed Paul and Gerry to give us about what the June rollout is going to look like, what the beta tests are going to look like and so get a little bit more detail about what specific things you are going to be doing with ICIDH and also –
DR. GREENBERG: Maybe we could get Don Lawler to speak more about it.
DR. IEZZONI: Maybe get Don Lawler back because Don was, on the second day, he was going to talk about adding an ICIDH code to the physician claims counterrecord. So we could certainly do that.
People might recall that we had talked about having the April meeting be on the West Coast. I don’t think so. No. That was pretty obvious. The minute that we canceled the meeting I knew that we were not going to have a West Coast trip so I think, Susan, we can still keep the April meeting. Does that sound like a reasonable thing to do for people for the April meeting?
PARTICIPANT: That is the 13th and 14th.
DR. IEZZONI: I really don’t recall the exact date. But again, we have a July meeting and what we could do at the July meeting is hear more details about the rollout and maybe at the July meeting also see what, bring in some of the international people to give their perspective. If we start now, we can maybe get some of the international folks to come in and give us some perspective so then what we would have –
PARTICIPANT: Actually it was the 17th and 18th. Of July.
DR. IEZZONI: You did book an October meeting date? So at the October meeting date we could maybe hear what the results were of some of the beta tests and get a more specific, I mean, that is a very doable project and I think Paul is right that that would be a useful thing. How do people feel about that?
DR. PLACEK: Are you talking about rollout results July 17-18?
DR. IEZZONI: Hearing about what the experience was like, yes. What the rollout experience was.
DR. PLACEK: And possibly a WHO representative then.
DR. IEZZONI: And some of the international people in July. I figured that would give us enough time to try to schedule some of those folks to come on in.
DR. PLACEK: Right.
DR. IEZZONI: And we would like to get people who are pro and con. We would like to get the full range.
DR. PLACEK: I sure would like to hear from the people who were there although Marjorie plans on attending one rollout and Gerry another and me the third. But you don’t want to hear quite so much from us, an overview, as you do directly from the representatives from professional associations who were there.
DR. IEZZONI: That is all we would probably want to hear from, frankly, Paul, because in April you are going to give us more details about what the rollout is going to look like so we will have heard from you in April.
DR. GREENBERG: We will only give our opinions during coffee break.
PARTICIPANT: Lisa, I was concerned that Paul and Gerry have not talked a little bit about some of Don Lawler’s funded projects which I think this committee would very much be interested in.
DR. IEZZONI: Well, we should hear about that in April.
PARTICIPANT: We will be adding items to the BRFS in Colorado is excellent work. Bruno Issimian’s work with childhood. All of them relate to the ICIDH and I think in addition to international people you really want to hear it because their work is more directly user oriented.
DR. IEZZONI: So this would, Marjorie, in terms of thinking about our budget, this would allow us to have money maybe for travel.
DR. GREENBERG: Yes, I think we would be all right. Turns out we, actually Jim didn’t mention it, but we have gotten funding again from the Office of the Secretary. So I think we should be okay.
DR. IEZZONI: All right. So how do people feel about this notion that we will continue to try to hear what information about functioning would be used for, completing, having Alan Meyer back in.
DR. GREENBERG: Did he actually get here?
DR. IEZZONI: I cannot imagine that people got out of Logan that day which I was glad about for obvious reasons. Then we will try to track a very active ongoing happenings in the United States about ICIDH, try to kind of track them in the sense that we can make a recommendation from our committee’s point of view about where this might be heading.
DR. PLACEK: Are you still locked into the concept of collecting this with administrative records? Maybe there is another way besides administrative records. That seems to be a limiting factor.
MR. HANDLER: I don’t think it does. I mean, it sounds like we have got the, as Kathy laid out, we have got the enrollment record. That might not work, but we have got the encounter records, we have got the claims attachment. We have got a variety.
DR. GREENBERG: I mean, I think it is a given that information is going to continue to be collected in surveys and hopefully collected better, et cetera. It is not in lieu of that.
DR. IEZZONI: We wanted to distinguish this from the survey.
DR. PLACEK: question, Lisa. Phil was suggesting Lightneck, David Gray, those people. Are you thinking about them for April or some other?
DR. IEZZONI: Are those international people who know about it?
DR. PLACEK: Those are not international people, no.
DR. GREENBERG: Those are U.S. people. Those are the main people who are being funded. They are researchers in the U.S.
DR. IEZZONI: So why don’t we do one day, because it is a two day meeting in April, one and a half day. Why don’t we do three-quarters of the day trying to wrap up potential users like the Lisa Simpsons and the Don Lawlers and the other people who are telling us how you might use this information and if we can come up with some more body folks, that would be good, too. And then let’s do the last quarter of that day and then the next half day or day until about 1:00 on ICIDH in the U.S. The U.S. people who are doing ICIDH work. But we are also going to want to hear a little bit more from you, Paul, about what the correlated activities are going to be.
Do people feel like I have railroaded this? Is this okay? Yes, I railroaded.
DR. GREENBERG: I do think it would be interesting to know if Barbara’s first recommendation, if people outside of this facility or whatever who are familiar with this would find this useful and helpful. I still think that would be interesting. I don’t know if there is anybody who is going to weave it in but I think it is an interesting proposal on how do they use it, how do people use it.
DR. IEZZONI: Working with staff who work very, very hard to put these meetings together, it is really quite important for us to be quite concrete on what we want to look at.
DR. GREENBERG: I am the last one not to agree with taht.
DR. IEZZONI: Yes, and so it just really helps us identify people and ask them questions so we will get useful information.
DR. NEWACHECK: In thinking about the value of doing this, particularly the focus on ICIDH, it would be helpful to get a sense, I don’t know whether you would get this off the record, even to get some sense about how serious the department is taking the ICIDH and obviously you guys are spending time on it, Don Lawler is spending time on it. But are those sort of isolated pockets that are happening or is this really something that the department is taking very seriously and intends to pursue?
DR. GREENBERG: NIMH actually has probably put the most money and effort into it but honestly if you asked the members of the data council what ICIDH is, they wouldn’t know other than Ed Sondik, they probably wouldn’t have a clue.
MR. HITCHCOCK: The NLM folks.
DR. GREENBERG: Yes, sure. But it has been in a testing, revising mode so it really hasn’t been an effort to kind of sell it.
DR. IEZZONI: Marjorie, on this score should we ask the data standards people to join us to have this be a joint effort? Aren’t they interested in coding and I wasn’t here this morning for that.
DR. GREENBERG: Originally you did ask them.
DR. IEZZONI: I did but this is a slightly reconfigured project.
DR. GREENBERG: I would continue to ask them, yes.
DR. IEZZONI: I don’t think it is as important, given the way we are talking about it, to include the privacy people.
DR. GREENBERG: At this point probably it is too –
DR. IEZZONI: I am looking to my back to make sure. But the more global, the item number, option three, I really did want to have the disability advocacy groups and others to join us to deal with privacy.
DR. GREENBERG: Now, you are not going to be here tomorrow when the subcommittee report back?
DR. IEZZONI: No, I was going to ask Paul if he would be willing to do that. I have to go back to the IOM tomorrow. I will be here in the morning.
Are there any really strong dissenting views because weak one we are just going to sweep under the table.
DR. STARFIELD: I don’t think we should take off the agenda completely the global measure of health because that is relatively feasible.
DR. IEZZONI: Well, if you can figure out a specific way to work this in, let me know because we need to be very specific with staff and with coming up with questions and who we should be having come in to speak with us.
DR. STARFIELD: Well, we have Bob Kane’s opinion on it. Maybe we could get some opinions on that.
DR. IEZZONI: We are happy, Barbara, we would love to have suggestions about whose opinion because we really –
DR. STARFIELD: I know, especially with kids. There have not been nearly as many studies on that.
DR. IEZZONI: But the kids, I thought she gave a great presentation on kids and I think Lisa Simpson the next day was going to talk about children as well. I advised her to do it.
Should we adjourn? Thank you everybody and thank you, Michael.
(Whereupon, the meeting was adjourned at 5:20 p.m.)