[This Transcript is Unedited]
Room 705A, Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201
DR. IEZZONI: This is a meeting of the Subcommittee on Populations of the National Committee on Vital and Health Statistics. Today we are joined by a wonderful group of people who are going to talk to us about ICIDH. Let me just up front apologize but the committee members are a little bit thin. I think that is the result of July. It is unanticipated. Andy Kramer and I are here holding down the fort. Hopefully Paul Newacheck will be showing up and Kathy Coltin will be coming in later this afternoon.
That does not mean our interest in the topic is any less. We are very excited to have you here today.
What we usually do at the beginning of a meeting is go around the room and introduce ourselves briefly, then introduce the members of the audience. I think, are we on the Internet today? We are on the Internet so therefore it will be necessary for people to speak into a microphone so they can be heard over the Internet whenever you have any comments. Hopefully since this is a small enough group, if there are comments from the audience we will be able to have you come to the table with us.
My name is Lisa Iezzoni. I am Professor of Medicine at Harvard Medical School and I am chairing this subcommittee.
DR. QUEEN: My name is Susan Queen from the Health Resources and Services Administration. I am the lead staff for the subcommittee.
DR. KRAMER: I am Andy Kramer. I am professor of Medicine at the University of Colorado School of Medicine and I am a member of the subcommittee.
MR. HANDLER: Aaron Handler from the Statistics Office, Indian Health Service in the department and I am a staff person to the subcommittee.
MS. LUX: Good morning. I am Jayne lux. I am currently director of board operations at the American Psychological Association here in Washington, but I spent two years in WHO Geneva working on the ICIDH and I am speaking to you today from that perspective.
DR. WOLFSON: Good morning. I am Michael Wolfson from statistics Canada. I am the Assistant Chief Statistician for analysis and development and my responsibilities include our whole statistics program.
DR. ANDERSSON: My name is Yerker Andersson and I am the National Council on Disabilities.
DR. PLACEK: I am Paul Placek from the National Center for Health Statistics.
DR. HENDERSHOT: I am Gerry Hendershot from the National Center for Health Statistics and staff for the subcommittee.
MR. HITCHCOCK: I am Dale Hitchcock, Office of the Assistant Secretary for Planning and Evaluation and staff to the subcommittee.
DR. GREENBERG: I am Marjorie Greenberg from the National Center for Health Statistics, CDC and Executive Secretary to the Committee.
DR. SELTSER: I am Ray Selster. I am retired but I still hold the title of Dean Emeritus and professor Epidemiology Emeritus at the University of Pittsburgh School of Public Health.
MS. WELLS: I am Nora Wells. I am from an organization called Family Voices that represents families of children with special needs around the US.
MS. HANSON: I am Michelle Hanson. I am a summer intern working with Gerry Hendershot at NCHS.
DR. THREATS: I am Travis Threats. I am a professor in speech language pathology at St. Louis University and I am the American Speech Language Hearing Associationµs liaison with the World Health Organization on this process.
DR. RUGGIERI: My name is Alex Ruggieri. I am a research fellow in health informatics at Mayo Foundation, Rochester, Minnesota.
DR. DRABECK: John Drabeck. I am an economist in the Office of Disability Aging and Long Term Care Policy in ASPE.
MS. HAWLEY: Hi, I am Judy Hawley. I am director of practice and policy with the Minnesota chapter of the American Physical Therapy Association.
DR. IEZZONI: Terrific, and we have Patrice Upchurch over there who is our able staff person and will help us out if we need it.
The subcommittee has been - oh, we have a new person.
DR. WALLACE: I am Dr. Gloriajean Wallace and I am a professor at the University of Cincinnati and a speech language pathologist.
DR. IEZZONI: Terrific, thank you. It is a wonderful group and I want to thank Susan, Paul and Gerry, the staff, for putting it together. It looks like a terrific program.
The subcommittee has, for about eight or nine months now been looking at whether ICIDH might serve as a convenient way for us to gather information about health status and functional status for routine administrative functions. As many of you know, a lot of information on diagnoses and procedures is collected routinely through the administrative transactions that pay for and count the number of services that people get in our health care system but the ICD-9-CM which serves as the diagnostic classification system and CPT which serves as the procedure classification system contains fairly little information about peoplesµ health or how they are doing in their daily lives and their functional status.
A number of years ago the subcommittee and the full committee came out with something called the core data elements which was a set of a number of items that we believe should be routinely collected so we can learn more about the health of the American public. But we put a placeholder in the place for health status and functional status because at that time there was really no consensus for what we should have in that place.
ICIDH, as everybody knows, has been recently undergoing a facelift and it looks pretty interesting and so the question is now whether we can interest doctors and other people to be willing to code information on routine administrative transactions on using ICIDH and whether, in fact, it would be appropriate beneficial, whether it would really help us learn something that could improve the health of people and help us better target better programs for prevention, improving health and so on.
So that is what we have been doing. We have been hearing from a number of people on so far we have had a couple of sets of hearings and for the next couple of days we will be hearing from a variety of people representing different potential consumer organizations, people who are academics in the field, people who know about the classification system and people who represent people with disabilities and other people who might have special needs.
So a number of people have just come in, including one-third of the committee members so I want to give them a chance to himself at this point.
DR. NEWACHECK: Thank you. I am Paul Newacheck with the University of California, at San Francisco.
DR. IEZZONI: We will have some time for questions and hopefully since it is a small group, we will be able to interact with members of the audience if people have questions. Dr. Wilson, I think that you are first up. Oh, Bob Griss has just come in. Hi, Bob.
DR. WOLFSON: Good morning. Thank you for the opportunity to present some material to you.
DR. IEZZONI: Bob, do you want to be wired? Is there a lavalier mike for Dr. Wolfson? I love how the Canadians have their flag on the corner. This is the second Canadian presentation we have seen in the last month and it is really quite lovely.
DR. WOLFSON: I really appreciate the opportunity to address the subcommittee on the question of the international classification of impairments, disabilities and handicaps, ICIDH. My remarks this morning will be at a more general level focusing on the general objectives and structure of the latest draft and say some words about some of the problems I see with the current draft and a few words at the end about process.
The main conclusion, not to keep anybody is suspense, is I think the basic idea and objectives of the ICIDH are wonderful but I donµt think the current version is ready for prime time.
Let me start with a bit of context and background. I think everybody would agree that we need much more, there is more to health status than measuring what causes of death there are. So we need a broader vocabulary, conceptual framework and everything in between the vocabulary and conceptual framework for discussing and describing the health of all of the population while we are alive.
We also need international comparability and even thinking more narrowly about Canada or the United States, there is enough diversity in the ethnic backgrounds of the population that the kind of work that goes into international comparability is used domestically as well.
ICIDH is intended to and has the potential to play these important roles. In addition, this particular revision of the ICIDH is motivated by many things but at least the two following ideas are central: de-stigmatizing the language and being better able to reflect and enable descriptions of the physical and social environment as parts of the causal story of handicapped, to use the term, that was in the original ICIDH.
It also seems critically important to me that we want to use this opportunity to develop a language classification, structure, et cetera, to bridge the major enterprises of clinical care, hundreds of billions of dollars spent there provided to people both in hospital and rehab centers and all over the place; population surveys as for example undertaken by our organization and by the National Center for Health Statistics and clinical and health services research, for example, as funded by the NIH.
This is a brief extract of the kinds of words used on I think it is page nine of the current beta-two draft of the ICIDH. There are a wide range of very lofty and important objectives, a multi-purpose classification, a basis for understanding, a common language, international comparability, statistical tool, research tool, clinical tool and something relevant to social policy and education.
Let me put those objectives in a somewhat altered form. We want an overall conceptual framework and a set of classifications not necessarily hierarchical but allowing, for example, allowing multiple codes. In addition, for each item at the finest level of the classification we need a precisely worded description and a question that can serve as the basis for data collection. There is a difference between having a description and having a well-worded question that can go on a survey.
Then, assuming appropriate words have been used and they have been validly translated, we do have the basis for internationally comparable descriptions of health status and these same questions can be selectively used on health interview surveys and in clinical trials.
The major benefit of doing it this way is we can bridge and synthesize knowledge - in other words provide the evidence base for evidence-based medicine. I donµt know how much of a buzz word that is here, but north of the border it is very much.
DR. IEZZONI: Big, very big.
DR. WOLFSON: Okay, well, where is the evidence going to come from if we do not collect in a systematic, coherent way across all of the various, the wide range of venues where care is given or research is undertaken, basic information on how healthy the people are before and after an intervention, for example.
This is the vision and the potential of ICIDH. It is excellent stuff, it is long overdue and the analogs, since I am an economist, in the national account, SNA, the 800-page tome produced by the World Bank and United Nations jointly and others, the idea of having such a classification structure is taken for granted in that field. Why should we not be aiming for something similar in this area?
Let me show a diagram that gets at this business about bridging different domains at the more operational level. In very concrete terms we can think of three main sets of standard questionnaire items or health constructs and I will add a fourth one in a moment which isnµt on the picture.
At the center, the small circle is a set of 8 to 12, letµs call it 10, focused, carefully chosen questions about health status that can serve for something that the folks at WHO in Geneva are calling SMPHs, summary measures of population health. Healthy People 2000, Healthy People 2010 I think has something like health life expectancy or health adjusted life expectancy. What we are talking about here is the core ingredients that go into that summary index, what we in Canada for a decade have been talking about the need for some sort of GDP of health.
In the case that we use, we use something called the McMaster Index and just to give you a little sense of the concreteness of this, it has eight dimensions - vision, hearing, speech, mobility or gross motor, dexterity or fine motor, emotion, cognition which is memory and thinking and pain.
The next middle level circle, health survey items, 50 to 100, say, are a set of questions that we can put on our national population health survey, you can put on your national Health Interview Survey and in the ideal world WHO Geneva would, on the basis of a consensus process, articulate some list, 50 to 100, say, and we might not choose all of them on each of our respective surveys but they would grow over time to be a common core of standard questions that had been carefully validated cross-country, cross-culturally.
And last, the ICIDH is sort of the mother source of these items, the underlying conceptual framework, the detailed item pool that could be used not only as a source of these other questions but as a classification structure and as an assessment instrument in clinical and other related settings.
The fourth piece that is not really on here because it could take different forms might look like this or like that would be the set of questions one puts on a clinical trial or health research study. I would strongly urge that when we do these things we agree on a common measure as if 36 doesnµt quite cut the mustard but something else. Like that or like your call or the McMaster HUI plus a whole range of other questions tailored to the specific objectives of the study.
So we really want to have or this is the vision I propose or commend to you on the committee is this kind of idea, that ICIDH has a bigger role than just being a classification structure and checklist for people in rehab or a nursing home or home care settings.
So I think I have gone through the three concentric circles in general terms. There are a couple of properties of the questions that go into the summary measure that are unique and are more stringent than the others but if you want I can come back to that. But it does raise the question, if you have this broad list 300 three-digit items, thousands of four-digit items, how does one select the 50 to 100 that should be in the pool for the Health Interview Survey or the dozen or 10 that should be in the summary measure? At the moment I donµt see in the ICIDH any natural process or underlying rationale for the selection of the parsimonious, that is two different levels of parsimony, subset that has the empirical grounding to say this is why we chose this versus that.
As I am sure everybody in the room is familiar, this is the 1980 ICIDH simplified version of the diagram. It has been widely criticized for its linear causal story and for the emission of the social and physical environment. The extent to which these factors influence the way disability is expressed as handicapped. I donµt know if you are familiar with that phrase. I find it a useful analogy analogous to the genetics story where nature nurtured debate, gene expression, handicapped is an expression of disability in a milieu, a social context.
So it didnµt have all that. Here is what we have now in the ICIDH-2 which again I suspect you have all seen on page 23. It is the top level conceptual structure. It is a reasonable set of boxes. It is also superior to the original version in that the language is more neutral and it goes beyond the unidirectional representation of causality; however, it does have arrows going every possible way so it is everything affects everything else. It is not terribly useful as a causal story.
Just to show there is another way to do this, there is a fellow in Quebec named Patrick Fugerillas(?) who has developed a conceptual structure for what he calls the handicapped creation process. Let me be clear. I am not suggesting we scrap ICIDH and move to this but it is just to show you that there are competing - I am sure there are many more - for alternative views that illustrate or put together these factors in a way that makes it to my mind clear that there is this interrelationship between environments extrinsic and intrinsic factors and treats in this case what is called life habits rather than handicap as the joint outcome of those things.
At the risk of having rather strong language in the title, a key objective of the ICIDH to revision is to get rid of the idea that handicap is solely the result of intrinsic factors. It can result from either individual factors, intrinsic factors or external factors, extrinsic factors, the social and physical environment given, something at the disability or impairment level.
A fundamental issue in the ICIDH is how best to organize the top level of the classification system so that we can make clear inferences that we can clearly describe and as a result of this description, infer or diagnose the relative role of intrinsic and extrinsic factors.
For example, if you can say a person is able to do something but does not do something, the wedge between those de facto reveals something that is external to the individual. And this avoids the earlier problem of, quote, unquote, blaming the victim in the classification system.
Now, in principle and certainly based on numerous personal conversations I have had with the lead author of ICIDH-2, namely Bedirhan Ustun at Geneva who will be coming before you tomorrow and I should say parenthetically I went through this material with him on Friday just to let him know what I was going to say. His idea about how we get at this environment for extrinsic things is by looking at disjunctions between the A, activities dimension and the P, participation dimension. However the descriptions are not in those terms. A is not can do but it is talked about in terms of performance. But to give you an example, can a person drive a car and do they in fact or if they donµt drive a car, what is going on here.
But in the book itself, in the publication itself, A is quote, unquote, the performance of the task or action while P is an individualµs involvement in life situations. Now, as you probably know, all around the world or not all around the world but in a number of centers around the world there are WHO coordinating or collaborating centers that are testing, responding to a structured set of questions from WHO Geneva trying to assess the beta-two draft. Canada, along with the US and others is in the middle of doing this but there was a consensus meeting a few weeks ago and there are preliminary results and here are some quotations from the preliminary draft results. Marjorie has a copy of this.
One question was does this structure provide a meaningful way to classify? On that one, there was no consensus which means some people said yes but a significant number of people said no. That is a pretty fundamental problem with the ICIDH and the Canadian situation. For example, people said it was not mutually exclusive, it was too difficult to use, too many overlaps.
Is the distinction and activity item between activity and participation clear? Here there was a complete and unanimous consensus. No, it is not clear. Are the conceptual rules for these items applied correctly? Consensus in Canada, no. We are not talking about two or three people. We are talking about dozens of individuals across the country, some experts and some not and you can read the quote.
Let me give one, it is a rather lengthy quote, taken verbatim from the I wasnµt in the room at the time, but at the consensus meeting in Ottawa a month or so ago.
Quote, the activity dimension includes activities that range from those that are quite simple to those that are complex and seem to involve the more simple activities. For example, A-360 activities of fine hand use would also be categorized or would affect A-550, dressing activities and there are many other examples of this. These two activities are situated at the same level in the classification, yet one seems to be a subset of the other.
Also, there are overlaps between the participation dimension and the activity dimension. For example, P-510 participation in housing for self and others, NAA-6100 finding a place to live. Or P-540, participation in nutrition for others, NA-630, activities for preparation of meals. Or P-310, participation in spoken exchange of information, NA-250, conversation activities or P-1100, participation in personal cleanliness, NA-510, activities of washing and drying oneself.
The person went on to say theoretically I understand the difference between the ability to do versus the opportunity to do. But the differences between these categories is quite subtle and will certainly lead to the categorization of the same element in more than one place, thus making the classification not mutually exclusive. Let me add a parentheses, it is not intended to be. Or the user made categories an element in one area but not in another, thus making the information inaccurate. That is a quote. This person, was trained in this thing, didnµt understand it. Didnµt understand a key objective according to Bedirhan Uston that the distinction between A and P is to allow the revelation, the elicitation of problems in the environment.
Meanwhile WHO Geneva between Beta-1 and Beta-2 was busy doing a whole lot of work. They are about to publish a book called the cross-cultural applicability research study which Bedirhan is the first author. At the beginning of the book it says this is principally aimed at identifying the cultural consistency of the disability construct found in ICIDH-2 and an attempt was made to build a classification and assessment from the bottom up.
However, let me go back while I am citing this. With respect to this what we are calling the AP debate, the activity-participation debate or discussion, and they are not unique to Canada. The Carr study looked at these things as well. It was, by the way, funded substantially by the US National Institutes of Health. Bedirhan is the lead author.
Even though it claims to be bottom up, the second quote there, key parts of the analysis, concept mapping and pile sorting have the impairment activity participation as part of the lead-in protocol to the details. The striking thing here is that WHO Geneva itself recognizes that there is a problem. The classification of items into the three top levels, impairments, activities and participation, was not sufficiently clear. Over half got it wrong.
What did they do? They have changed the preface to the beta-two draft. They havenµt changed any of the content or structure. My view amending the preface looks rather inadequate and superficial. Canada has been pressing for I think about two years, I think longer before that, for a recognition and action on what we saw and have seen for a long time as a fundamental problem, a conceptual problem, confusion. I appreciate that we are only one country and WHO has 191 members whom I sense is at a significant number of ICIDH collaborating centers have expressed similar concerns. I think Marjorie Greenberg knows much better than I do, but Australia and UK and other ones, France, as well as the US have raised this question.
I am going to focus, I have four more slides, on this AP debate as the main point I want to make but other concerns and ideas will undoubtedly emerge during the course of your two days of discussion. If one of the core objectives of the ICIDH is to allow a clearer description to support more precise analysis and diagnosis of the role of environmental factors, the issue is how best to structure it to do so. One option is what is currently implicit in ICIDH, but, as I have noted, this doesnµt seem to be working.
Option two is not to try for so much parallelism between the activity level and the participation level. Restrict are you able to items to simple activities where implicitly the environment only includes the elementary things as light, gravity, air for sound transmission and a flat surface, sort of simple activities. And for more complex activities use the do you kinds of questions and then we can infer if there is a problem. Driving a car, if people donµt drive a car if they have no impairments or problems with simple activities it would be an inference.
The third option is to make A and P questions much more strictly parallel. They are not strictly parallel right now. Do you drive a car? Do you drive a car? One is the activity, the other is the participation.
And if there is a difference there, there are any number of reasons. You canµt afford to. That would be a personal, non-health characteristic. You donµt have the money. You are not permitted to because of the licensing authority. That would be a social legal kind of bar. Your spouse does the driving. That is personal preference. There is an assistive device you are lacking that would compensate. That is a physical environmental problem.
Option two is easier to implement in the current climate with WHO. It seems to me that it is less radical a change for WHO to be asked to move items around than to go back to the top level of the structure which is option three and rethink it.
But letµs talk a minute about the WHO process which I must admit I only learned about a week ago. We have known for a long time that the objective of the staff of WHO was to have this approved by the World Health Assembly in May of 2001, the ICIDH version two. However, the plan as I learned last week is that there would be a resolution covering ICIDH, summary measures of population health and the pool of items for Health Interview Surveys so all three of the concentric circles I showed earlier and in order for this to satisfy the procedures the WHO would need a draft resolution in September circulated to member countries and a final resolution circulated in October.
But the corroborating centers have been working to a September deadline to complete their work and a mid-November meeting to get together internationally and discuss the results. So to put it meaningfully, politely here, how do you draft meaningful and fair resolutions when all the results are not in?
So to sum up a couple of my problems here, the basic conceptual structure is problematic. The top level classification is ambiguous and/or doesnµt meet a key objective. It is not clearly linked to other claimed uses. There is no item pool associated with the classification structure, and it is not well designed to support what we know to be another priority of WHO in Geneva which is the summary measures of population health which allow them, among other things, to say that Canada ranks 30 and the US 37 in the global lead table of health systems. And the approval process again putting it politely is backwards.
What are the solutions? One is to simply delay the resolution to the World Health Organization assembly by a year is something I have personally suggested to the folks in Geneva. The other and this is a difficult judgment call in my mind. I donµt know how the committee will think about it because on the one hand there is a lot of momentum, a lot of people are being engaged. It would really be useful to build on that momentum rather than to risk slowing it down in which case is there some other option. And one option, if one is going to go ahead on the kind of time scale that WHO is thinking of, the resolution would have, it seems to me would have to be much more general. It wouldnµt say this is the gospel, it is not written in stone. So the ICIDH in whatever form it is could be attached as an annex but if that were done, my view, and I think the view that Canada may well take is that it would have to be accompanied by, in the resolution by some description of a transparent and meaningful, not a token process for the continued evolution of the classification system and further more, the direction of that evolution. The principles that would guide that evolution would have to be clearly indicated in the resolution.
And lastly, what might you folks here in Washington do about all of this? It seems to me that it is essential to recognize that WHO is the global organization, is the organization that appropriately has the mandate for developing and promulgating standards and classifications and measurement systems in the health area. That is fundamental and we need them. You can broaden the discourse, you could ask as leaders in broadening the discourse here in the US. I heard in your introduction, Lisa, that the ICIDH is being considered principally from the point of view of its applicability in clinical settings but I would remind you of the three concentric circles. It seems to me in its introduction and in my view as well it has the potential to play a much broader role.
And finally, the WHO can only do what the World Health Assembly authorizes it to do and the U.S. and Canada and other countries obviously have voices in that process so that you might contemplate advising the US government on appropriate behavior in that setting.
Thank you very much.
DR. IEZZONI: Okay, what I would like to do, Michael, thank you for that presentation. It was great. Patrice, can we get copies of your slides? Okay, so Patrice will get copies of the slides. What I would like to do is ask anybody if they have specific clarification questions for Michael right now and then we will engage him in the broader questions for the whole panel after the other two speakers have spoken. So are there any questions about specific things that Michael -
Okay, thank you. Jayne Lux is going to be speaking next.
MS. LUX: If it is okay with you, I would like to just speak from here.
DR. IEZZONI: That is perfectly fine.
MS. LUX: I only have about six overheads. Thank you for inviting me here today and just by way of background, I have been invited to talk with you a bit from my perspective as an individual who was working in Geneva on the drafting of the beta two version of the ICIDH and certainly appreciate Dr. Wolfsonµs comments on where he perceives some of the problems to be. I know we went around some of these discussions many, many times and I will certainly address some of the issues I am sure in the general panel discussion but am happy to have Bedirhan on board as well tomorrow so he can provide some more up-to-date information than what I am able to do.
Just by way of background, I am trained as a speech language pathologist. There are a number of us in the room, and practice for my first 10 years or so of my career in clinical rehabilitation mostly with individuals with traumatic brain injury. I was from my experience working with Washington University School of Medicine where I began to become involved with the ICIDH revision process through a colleague there and participated in the beta one field trials. From there then I found myself moving to Geneva where I spent two years from 1997 to 1999 mostly at that stage looking through the data. What we had learned from the beta one field trials and then crafting along with a group of my colleagues the beta two draft that you have all seen.
Just as a point of clarification before I get into the meat of my comments, I am working for the American Psychological Association here as I mentioned but will not be offering testimony whatsoever on behalf of that organization. That will be offered tomorrow by one of my colleagues there.
What I am going to do is go through the list of questions that I had received and try and address them, giving you some history and background about the ICIDH. >From what I have seen in the testimony, the past testimony that I have reviewed, some of these issues have been covered, and I will only reiterate them for purposes of highlighting what I feel are important aspects that the subcommittee should be aware of.
I will probably spend most of my time on question number one but I assure you I will get through all seven questions. I am assuming everyone has seen the copy of these seven questions that has been distributed by Paul and Patrice or should I read them out just to rephrase?
DR. IEZZONI: Please read them out.
MS. LUX: Okay. The first one is would using the ICIDH be an appropriate way to capture functional status information on routine administrative health care claims. In reading through the transcripts from prior meetings of the subcommittee it appears that there has been a clear recognition of the value of adding functional status to information that is currently collected on diagnosis and I would wholeheartedly support this direction as I am sure others in the room would and will underscore that indeed the literature provides ample evidence. The diagnosis alone is not sufficient in predicting some of the areas or some of the outcomes that you see here: service needs, length of hospitalization, level of care, outcome of rehabilitation, receipt of disability benefits, work performance and social integration and I think everyone would agree with that and if not, I guess we can talk about it but again I underscore the importance of the direction in which this process is moving.
So we know that a purely medical classification of diagnoses wonµt provide us with the information that is required for planning and management but if we combine that with functional status as on the next overhead, we find that we are able to predict or we are letµs say a little bit better positioned to predict things like health service utilization, length of hospitalization, return to work, actual performance in work and recovery of social integration.
So then onto the question of is ICIDH an appropriate way to capture this much needed functional status information. I would argue that it is despite some of the comments that Dr. Wolfson has made but I will do this from the perspective of looking at some of the principles that were behind the writing of the beta two draft when we did it. Now, whether those principles can be more fully embodied, more fully developed, no doubt they probably can be but at least to give you some perspective as to what we were striving to do and then be able to move from that and I am hoping to address some of the issues that I have heard the subcommittee deliberate in terms of the utility of ICIDH or really any scheme that is chosen to answer some of the questions that are facing the group.
The first principle on the next overhead is universality versus the minority model. By this what is meant is that a classification of functioning is applicable to all people irrespective of health condition so ICIDH-2, you have probably heard this before and you have read this in the book, but it is about all people rather than being a classification of people with disabilities or even of the problems that they may experience, the ICIDH-2 is a classification of functionality at three levels understood in neutral terms.
The universal approach recognizes that the experience of disability is not restricted to a subgroup of persons but that all individuals are at risk for disability at some time during their lives. As I understand from the prior deliberations, you are interested in the general population, not only in disability and I believe that ICIDH-2 fits well with this aim.
Secondly, the ICIDH-2 is a classification said somewhat differently of human functioning and disability if we look at it from both positive and somewhat more negative perspectives. It systematically groups functional states associated with health conditions and provides, as was mentioned previously, a unified and standard language and framework where the description of human functioning and disability is an important component of health.
It facilitates communication that is sorely needed across health professionals in different treatment settings but because it is written for the most part without medical jargon, it can allow for communication among those in health services and those in sectors including business, insurance, policy, education, employment, research, human rights, economics and human development.
This is not the case with many other tools available today. So that was our goal at least in drafting goal number two or principle number two.
The third one was parity between mental and physical health conditions. The classification was written or it was our attempt to write it without emphasis on any particulate consequences or determinants of any specific health condition. As an example, in chapter four of activities which is getting around, some of the items are clearly physical activities such as walking. However, some of the other codes such as activities of using transportation as the passenger can be used in cases where there are physical problems with the activity but this item is written so it can be used equally well to describe a situation where there are only cognitive or sensory problems in using mass transit.
While the point has been made in your past testimony that ICIDH is not an assessment, we know that many of the currently available weighting instruments available today focus more on either mental or physical problems but are not able to address both equally well and I feel that ICIDH does afford the flexibility.
As Dr. Wolfson mentioned, there is the use of neutral language or the attempt was made to use neutral language as much as possible. Most item terms are worded in this way so that the classification can express both positive and negative aspects of functioning. For example, you will not find the word hemiplegia as an item name in the classification because this is seen as a negative term. Rather, you would code hemiplegic through the use of other items namely muscle power and muscle tone.
The fifth principle, etiological neutrality with respect to health conditions and other dimensions, the classification was not conceived with particular diagnostic categories in mind. The concept of etiological neutrality emphasizes that in principle there are no predictable correlations between various health conditions and aspects of disability. As was mentioned, this revision process has been an iterative one stemming back to the days in 1995 when we had an alpha draft which was then crafted into a beta one draft and, as you know now, the beta two draft.
The first order of business for many countries that have been involved in this work indeed is translating and giving us feedback on terms that work and donµt work within those cultures and so while we still may have work to do on that front, even in the beta two version, it certainly has gone through quite a number of drafts and feedback with regard to cultural concept and language that doesnµt fit within a global perspective.
The goal as well was that terms be operationally defined and that the classification be written to have lifespan coverage with specific attention given to writing item inclusions that are relevant to children and I will touch upon this again in a minute.
There has also been an evidence-based revision rather than a more opinion-based revision and that evidence includes data from the literature that is quite extensive on the use of ICIDH 1980 but then also the feedback that was received, as I said, from the alpha version and from beta one testing results, feedback from any collaborating centers and task forces and consultation with classification, taxonomy, terminology as well as technical experts and input from people with disabilities and other experts as well.
And lastly of the 10 principles, this is not all of them but I thought these would be the most germane to these discussions, are that environmental factors are an intrinsic feature of the conceptual model and the inclusion of these factors strengthens the usefulness of the classification with regard to increasing our understanding of facilitators and barriers in relation to human functioning.
My point in reviewing some of the principles of our drafting is to give you a little bit of an historical perspective but also hopefully to communicate that ICIDH-2 is an enormously flexible tool that allows for very gross or very fine descriptions of functional state associated with health descriptions. It is written in simple language that can be easily understood by people coming from very different backgrounds. I think this is especially the case in the activity dimension which includes what we learned from the cultural applicability research and that is that this is a collection of things that people do in every culture across the world and while maybe we need to have greater discussion on this, the overlap issue between A and P, our feeling is that at least the collection of items that appears in A particularly maybe the simple to more moderately complex activities are things that capture scope of human activity worldwide and so I would argue that this should be a very useful pool from which to draw items for the purposes of the projects that you are addressing.
The second question then is what are the logistical and feasibility barriers including concerns about data quality and accuracy to the widespread use of ICIDH-2?
Let me first address what I hear all the time when people see the red book and that is the concern that it is so complicated. And there is no doubt that with any tool there will be training necessary in the conceptual framework of the classification including the dimensions, what they are and what they are not.
Use of the qualifiers which are the digits, of course, that appear after the decimal point, this will also be critical to coding but this is the information that is found mostly in the first 30 pages of that very large red book. While there is an expectation that the introduction to the classification will provide much of the needed background to use it, there is also clear recognition that training programs are necessary, either self-study or face-to-face instruction in the coding rules and examples.
You have already heard about code IDH as one training tool and a variety of other training activities have been conducted by field trial centers worldwide in order to conduct the beta two field trials. So the fact that training is required can be viewed as a logistical barrier but I donµt see it as a major one. Without training, data quality and accuracy with any instrument will be compromised.
And so I see training simply as part of the implementation process of the ICIDH. From my perspective, having been in WHO, one of the main orders of the day, if you will, was to produce a good revision and I think that it would have been in an ideal world wonderful to keep up with training programs and packages as we went along. While some attempts were made, particularly at country level, with regard to training necessary to complete field trials, there has not been as much focus on the WHO side on actual training with the exception of what we have been able to go out and do one on one from the WHO office.
So in any case, this will be a necessary part and I commend the code IDH and other efforts that have happened already. But quickly getting back to the complexity issue, ICIDH should not be seen as the daunting collection of codes, all of which must be used but rather is a rich language from which one can pull only what is needed to suit the purpose at hand. You have already heard I think about the branch stem leaf structure. I guess that was attributed to a Turkish proverb, I donµt know, but if you could please put up the next overhead, Bedirhan is Turkish for those of you who donµt know.
The truth is that the way in which the classification is structured or at least its goal is to allow individuals who are really only interested in looking at the trunk of the tree to have the ability to do that whereas others who need to go down into further levels of detail such as the stem and the leaves and what have you, that is available for use as well.
And for individuals who donµt feel as if ICIDH actually has enough detail in this current state, the hope is and the plan is that there will be an opportunity to develop specialty versions of the classifications so that where necessary disciplines can develop a fifth and a sixth level of the classification if that is more suited to their need.
On then to question number three. This is are there conceptual barriers to using the ICIDH-2, including its appropriateness for infants and children. This question I will spend very little time on simply because I donµt have a lot of background in issues of children and youth but I can tell you that we have relied pretty heavily in the drafting process on the feedback from Dr. Simeonsonµs task force and I know that you have heard from him in the past.
He has given examples, I believe, of the way in which the current ICIDH-2 can be used to code issues of children and infants and he also mentioned the emergence of measurement tools that are framed using the ICIDH-2 dimensional framework. Not to my surprised, he has mentioned that he feels that there are limitations with the current version of the classification for children and youth. We have talked about that quite a bit with him and feel fortunate to have the input of his task force continuing to look at that as the revision winds up and as he mentioned there may indeed need to be someday a specific version for children and I know his task force is tasked with that effort.
Nonetheless, I believe that the current classification, particularly at the two level version, at the relatively broad level, is applicable to children and can be used to highlight particularly in activities, most of the issues that may be encountered with them.
What would be the benefits of using the ICIDH-2 and how would the data be used? That is question number four. I hope I have touched upon some of the benefits when discussing the overall principles such as the simplicity of language to facilitate communication across many borders and not just country borders, flexibility in choosing the amount of detail that you may wish to use and have focused broadly on human functioning, not only on disability. The conceptual model in the ICIDH-2 offers a complete picture of the functional aspects of the health experience understood as an outcome of the interaction between features of the person on the one hand and social and physical environmental factors on the other.
By incorporating both the medical and social models of disability, the ICIDH-2 is a flexible classificatory tool that allows users to describe in an international common language both medical and rehabilitative phenomena from the perspective of impairment and activity limitations as well as consequences of the environment for persons with disabilities with regard to their levels of participation in the full range of human life.
Because ICIDH-2 describes functioning at three levels and in neutral terms, users can identify not only problems at the level of body, person and society but also the absence of problems and individual strengths.
The study of disability involves the confluence of medical care, rehabilitation, education, community action as well as the social sciences, law and politics. It is designed for these uses in preparation for a new era in disability studies. I would argue that it is no longer sufficient to rely on one approach to the exclusion of another. Numbers must be joined to narratives, social theory must have a place along with health sciences in formulation of policy.
By addressing the local context of the social experience of the health condition and associated disability, we have a better chance of improving the quality of life of people. Health policy is inseparable from social policy and innovations in social policy derived from collective experience are necessary to address the needs of local communities. This is the new world of research that the ICIDH-2 anticipates.
The fifth question, does ICIDH raise any special concerns about data privacy and confidentiality? To this, this is my shortest answer, and I would say that it really does not raise any issues in my mind that are any different than the admission of data of any type into someoneµs medical records. So I think that all of the same foibles and issues that are present with those sorts of issues of admission of data into medical records would be applicable for ICIDH as well.
The sixth question that is posed is use of examples of widespread use of ICIDH in the United States or in other countries. I actually know a little bit more about other countries and will only spend a couple of minutes. How am I doing on time?
DR. IEZZONI: You are over, but the talks have been so great I am not stopping you.
MS. LUX: I am going to defer mostly to Biderhan on this one. He is surely much more in touch with what is going on worldwide than I am but I will tell you that I recently attended the meeting of an umbrella agency of speech-language pathologists in Europe and was very surprised to see their interest in using the classification from the perceptive of it being a common language.
Why was I surprised? Because these were all people from the same discipline but nonetheless they were seeing that across about 10 European countries they had the need to develop or to utilize something that would help them get all on the same page with regard to the language that they were using.
There are other countries that have started using the ICIDH-2, either the beta one or beta two framework in clinical settings. One example is a rehabilitation center where the ICIDH-2 framework is being used to gather a comprehensive, functioning profile of the client at the start of rehabilitation and then updating this profile throughout the process.
Now, this doesnµt sound very surprising to me but the reason why I offer this example is that there were a number of things that this particular group reported after introducing the ICIDH as a framework for tracking people through their rehabilitation process and they note that it was possible to track changes in the functioning of the client during rehabilitation, to prepare the cost of effectiveness of their intervention, to involve the client in the definition of outcome and to document the added value of different types of rehabilitative services to complement medical care.
However, it wasnµt all rosy. They did indicate that those things came after only being, putting in a strong effort in a number of areas and these included the development of different teams than what they had been using previously to, different teams of front line staff to learn and communicate a new professional common language. They had to change from the discipline base to a client-based management approach and of course there was need to develop IT technology for storing and retrieving the data.
But I better finish up with my last question, what would I recommend about the routine use of the ICIDH on administrative health care claims? Let me start by departing from my formal comments to simply say that I think there is great discussion. One cannot listen to Dr. Wolfsonµs comments without acknowledging that we do need greater discussion and I will be happy to participate in that today but also will be interested in Bedirhanµs perspective tomorrow.
But nonetheless what I think will be necessary as this process moves forward is that it being, of course, well-developed and well-thought-out, but using the expertise of individuals who have been familiar with coding in ICIDH both its benefits and perhaps its liabilities is the way the draft may stand now but also those on the team working for the process would need to have an intimate understanding as I donµt of the process and the way in which patients move through this particular system.
As with any coding activity, the coders will need to be oriented, well trained and supported by supervisory staff until they are independent. I agree with the suggestion that had been made in earlier testimony and that was to conduct a pilot project and for the purpose of beginning with a realistic plan, it may be best to focus on the activity dimension although I would strongly recommend exploring options that would allow for use of all three dimensions of functioning and environmental factors.
If the decision is made to code just for starters only an activity, because this would be more familiar with health care providers, I would recommend that this approach be seen only as very first step. My attempt has been to communicate the potential of ICIDH-2 in its flexibility so that in future stages of this work, coding in body function and participation dimensions along with environmental factors would be routine.
I am assuming that coding will be done by health professionals who are trained to evaluate functioning in the activity dimension or it will be done by coders who are well trained to take assessment data that is already collected by health care professionals and apply that by coding the ICIDH.
I think what I will do in the interest of my time is close here with my last overhead and simply go straight to a quote by Harvey Cushing that I think bears directly on the deliberations of this subcommittee and he states that a physician, and here I would insert anyone involved in health, is obligated to consider more than a disease organ more even than the whole person. He must view the person in his or her world and I would argue that ICIDH-2 enables you to do this.
Thank you. I am sorry for running a little over.
DR. IEZZONI: No, thanks, Jayne, that was great as well. I want to hear some of your comments later. Hopefully we will have some time. Are there any direct questions for clarification for Jayne? Okay, Dr. Andersson, you are up.
DR. ANDERSSON: I agree that Jayne did a wonderful job. Some of her discussion actually is very much like mine. But I guess perhaps -
DR. IEZZONI: Excuse me, I am hearing that the interpreter needs to speak more into the microphone so the Internet folks can hear it.
DR. ANDERSSON: As I was saying, Jayne did a wonderful job with her presentation and many of her points we will hear in my presentation this morning. You will hear them in a different way. Mine are going to be based on people in the disability community.
As Paul and I were discussing before, it is very important that we take different perspectives on the ICIDH-2. Let me begin with my paper. Historically speaking, the old ICIDH made a profound impact on the vocabulary in little spoken languages. For example, the very negative Spanish term, venos delidos(?) was dropped in favor of an entirely new term, disca procedos(?).
In certain countries, this foreign equivalent to disabilities has been found to be cumbersome compared to the more favored equivalent to the word we use in this country, handicapped. Several federal agencies in our country, However, dropped handicapped in favor of the term disabilities.
Most countries later replaced the depersonalizing term the disabled with the term persons with disabilities or a disabled person. The World Federal of the Deaf and the International Federation of Hard of Hearing agreed in 1992 to reject the term hearing impaired in favor of the old term, deaf and hard of hearing. Now both blind and visually impaired are acceptable in many countries. The World Federation of the Deaf was of the opinion that deaf people using sign language should be called a linguistic minority instead of a disability category but agreed that the term disability should be retained for political purposes.
People with paraplegia, quadriplegia and other mobility impairments preferred to be called wheel chair users. The International Olympic Committee conceded that the much older international Committee of Deaf Sports which is more known as CISS and the relatively new paraolympics committee could not be forced to merge as across disability or a single organization.
The worldwide union disabled peopleµs international, World Federation of the Deaf and Conclusion International have also agreed in 1992 that each of these organizations would have the right to represent each of their disability categories separately at the international level.
These international trends imply that constant consideration must be given to the differences both between and within disability categories. The fact that every human being has at least one physical, sensory or mental impairment, limitation or inability whose degree may be determined by current social demand behooves us to understand that the definition of disability cannot be fixed permanently.
For example, a former professor of mine listed here can write without any problem, but had some difficulties in using the phone or the text telephone, calculator and other electronic devices might be considered as a disabled person in our computer age, not necessarily so in those countries where the availability of computers is limited.
In short, the degree of health depends on what current body functions are needed and how well the external factors influencing the use of body functions can be controlled.
As I felt that people with disabilities should be given the chance to examine the new ICIDH-2, I volunteered to offer a short presentation on ICIDH-2, and international sign at the 15th annual general assembly meeting of the World Federation of the Deaf in Brisbon, Australia last year as I served on its board for 20 years, first as vice president and later as president. I had built a working relationship with deaf leaders from different countries and the leaders of other disability organizations. In the 13th world congress there were about 3,000 delegates, scientists and researchers, both deaf and hearing, theater actors and interested individuals from at least 60 countries.
After my presentation, several foreign delegates stated that as the ICIDH-2 was completely new, they could not offer critical comments. They, however, were pleased that the ICIDH-2 used the more positive terms, activities and participation instead of the more negative terms disabilities or impairments.
I have recently been invited to serve on a panel discussion on ICIDH-2 chaired by Dr. Hollenbaker of Zurich University at the coming congress of Rehabilitation International in Rio de Janeiro. There I may have another opportunity to learn more differences in perspectives on ICIDH-2 and the world concept of health. World Blind Union, Disabled Peoples International, Inclusion International, World Federal of the Deaf Blind and the World Network of Psychiatric Users have not publicized their own views of ICIDH-2 yet.
Distab with participation by scientists from five countries and the interagency subcommittee on disability statistics, on both of which I am serving, gave me much more insight into the possibilities of ICIDH-2. In the past, information about impairments or disabilities will be useful only for the understanding of their pathological or epidemiological aspects. The current investigation of activities would yield much more information in addition to the pathological or epidemiological aspects.
For example, the investigation of hearing as an activity instead of hearing loss would, in addition to the extent of hearing loss among the poulation, yield the following data: the number of those who can hear without hearing aids, the number of devices such as hearing aids, tv captioning, text telephones, et cetera; the number of sign language interpreters needed by individuals. The data would be useful for ENT physicians, hearing aid manufacturers, audiologists, tv companies, telecommunication companies, schools offering training in sign language interpreting and so on.
The investigation of walking would yield information about the degree of access to building and transportation which might be useful for orthopedists and other specialists. Rehabilitation specialists, architects, more transit companies, et cetera.
These strategies can facilitate health maintenance both directly and indirectly. Psychology and medicine have repeatedly emphasized the importance of prevention in health treatment as we saw on the slides here.
The development of ICIDH-2 is consistent with recent international trends, especially the UN standard rules with implementation of equalization in the opportunities for persons with disabilities and the report of the UN consultative expert meeting on international norms and standards relating to disability. They have increased the emphasis on the quality in everyday opportunities of participation. It does not necessarily imply that pathology should be dismissed. Individuals should continue to receive any medical treatment to arrest any decline in their mental, physical or sensory capabilities and if successful should then become familiar with the strategies that can enhance their involvement in everyday activities.
This shift may again expect a higher degree of teamwork among service providers, government and industrialists to find ways to develop universal designs in order to remove barriers in the existing and new architecture, technological and transportation facilities, mass communication and others. In addition to rehabilitation and corrective medicine with the participation of individuals regardless of what impairments they may have. The government and the business world and foundations may, of course, have to develop a new balance in their grants to medicine, rehabilitation and removal of barriers.
Thank you.
DR. IEZZONI: Thank you very much, Dr. Andersson. That was very, very informative. I learned something. Are there any questions of clarification for Dr. Andersson before we open the floor for a broader discussion? Dr. Andersson, I donµt speak Spanish. Can you translate those two words?
DR. ANDERSSON: Ninos volositos(?). It means a person who has no value.
DR. IEZZONI: Oh, we have Spanish speakers.
DR. ANDERSSON: I defer to the gentleman at the wall.
PARTICIPANT: You specifically want to know about ninos volositos?
DR. IEZZONI: Just the English translation for the two words that Dr. Andersson used in the first part of his talk.
DR. ANDERSSON: The first term and the second term is discapositos.
PARTICIPATION: They are terms that mean, the first one, has the same value of the other person who has a disability. For example, some people recognize that people who are deaf or hard of hearing are of less value in this society. Discapositos means to not have the capacity to create or perform.
DR. IEZZONI: Thank you. That is helpful.
DR. ANDERSSON: Are the two terms equivalent? Do they mean the same more or less?
PARTICIPANT: Most of the time. It depends on the context of when you use the term. But most of the time they are similar.
DR. ANDERSSON: Thank you.
DR. IEZZONI: Thank you very much. Okay, Dr. Kramer. Do you have some questions?
DR. KRAMER: I wanted to first of all compliment you all. That was an excellent presentation. It is fascinating the more we learn about the ICIDH system.
DR. IEZZONI: Andy, I think you are going to have to talk more loudly.
DR. KRAMER: Dr. Wolfson, I was curious, the results you were citing from the Canadian testing. What was the extent of that testing? Did it involve some actual liability testing of use of the instrument or was it a more feasibility type of a beta test? And also, based on those results, I am going to put you on the spot for a minute. If you were asked to make a recommendation to the Canadian government at this point on how they might use the ICIDH, how would you approach that?
DR. WOLFSON: First, I am not familiar in detail with the protocol. There was a set of questions on the beta two testing that were distributed to each of the WHO collaborating centers, including, I think, the group here in Washington. In the Canadian case, these were distributed across the country. I donµt know whether we are talking a half a dozen or eight or ten different groups with some measure of expertise and kind of health related focus. They were asked not only individuals but as I understand it small groups of people, six, eight, whatever, to go through those questions, discuss them and there were about 20 or so people who came to Ottawa the end of May I think it was to bring together and share the experience of their own local center and during the course of the two day period to try and reach a consensus. So it wasnµt based on any kind of test-retest reliability. But it was based, I think, included in this was some trial coding with at least an hour of training beforehand so that is the general context as best I know it. If you want, we can get more detailed information.
DR. IEZZONI: Can I just interrupt before you answer Andyµs second question? Does anybody know whether comparable training was done for ICD-9-CM back in 1980 or 1985, whenever it was first implemented? Do any of the NCHS people know whether comparable reliability testing was done at the time? No, donµt know. Okay, because certainly studies that have looked at the interrater reliability on ICD-9-CM have not found exceedingly positive results so the question is to what extent the ICIDH. Marjorie says you might have something to offer.
DR. RUGGIERI: Yes, regarding the question about ICD-9. It is interesting to note that ICD-9 is derived in the early 1800s from the London Bills of Mortality and has sort of found its way as a classification system but has never really been rigorously tested as such. There have been studies in the past five to ten years that have pointed out some of these deficiencies, particularly clinical content coverage kind of studies, but ICD-9 was never really designed or tested as a clinical representation system.
DR. IEZZONI: And I donµt think ICD-10, well, the CM hasnµt come out yet. Will it be coming out, Marjorie? Yes, probably at some point but I donµt think ICD-10 has ever been subjected to the same kind of scrutiny and routine use that it appears that ICIDH has perhaps because ICIDH is introducing new concepts that donµt have a history back to the 1860s. Okay, so to the second part of Andyµs question. Maybe you should repeat it again.
DR. KRAMER: The second part of the question is sort of what you would advise the Canadian government in a similar situation to do in the short run with respect to disability coding and functional coding in your systems.
DR. WOLFSON: Let me go back just a second to ICD-10. I donµt know what kind of testing went into the development of ICD-10 or ICD-9 but certainly I am familiar with the process from a distance of the conversion as going through from nine to ten and a major component of that is training, both in cause of death coding and in the morbidity part. Since I hate to suffer from cognitive dissonance, the advice I will give to the Canadian government is identical to the advice I am giving to you. And indeed I have had brief chats with senior folks in our health ministry.
The critical question in my mind is just how, what kind of form do the folks in Geneva see the resolution taking that they want to present first to circulate in draft form and ultimately final form to the World Health Assembly? Not to put too fine a point on it or mince words, the thing is too concrete. I would be against adoption in its current form.
Risk is freezing in some ideas that would take a long time to amend.
DR. IEZZONI: Yes, Paul.
DR. NEWACHECK: I would like to thank the panelists, too. These were really terrific presentations and very helpful ones. My question is actually for all three panelists. I would like to get a ballpark guesstimate on your part as to how far away we are now from the point in which we could use the ICIDH for our intended purpose which is to code functional status on administrative records. Obviously there is lots of ifs, ands or buts about how it is going to come out in practical terms, but given some of the formidable challenges we have discussed this morning or you have discussed this morning, are we two years away or 20 years away or we have always been 20 years into the process. Do you have a sense about that? Can you give us sort of your own sense about that?
MS. LUX: Well, I guess my disadvantage in answering the question is that I donµt have a good appreciation of your process and how long that takes. But -
DR. IEZZONI: Let me just interrupt, Jayne. We donµt have a process. I have to be honest with these people. They have given us their time and benefit of their contributions. We basically, though, are in a position to advise the government and remember that virtually every health plan to get paid or to be counted as having had a service delivered now has an ICD-9-CM diagnosis code on it and so, Paul, tell me if I am reformulating your question badly. How long do you think we are away from requiring them also to have an ICIDH code?
DR. NEWACHECK: Even at one of the grosser levels, not necessarily three digits.
MS. LUX: Right. Well, I am really just ballparking here. But I think that if the approach taken is one that has been discussed in here, then I support it as a piloting of a mock-up of what this might look like and one that is seen as doable within the system and I canµt define what that is although I would wager a bet that it wouldnµt be lots and lots of code but rather a much more finite set. Given a finite set of code and given personnel within the system, read coders who can be trained or health care professionals more better yet, a couple of years to roll the process out if you are choosing a finite number of codes to answer a specific question. And again, I want to underscore with the ICIDH that there are lots of codes from which you can choose but the user is really the one who needs to identify what are the questions, what are the issues that you most want to find out the answers to and then try and build from this very large collection of codes, build what it is that you need to try and meet those needs and those questions.
DR. IEZZONI: Jayne, I will be a little controversial here. The person who does the diagnosis coding in physician offices is the doctor. I am a doctor, I can say these kind of things. Do you think that physicians are ready for these kind of concepts?
MS. LUX: I think physicians in certain sectors certain are. Your rehab docs and some of those folks, this is what they do day in and day out.
DR. IEZZONI: Granted.
MS. LUX: Others may not be as ready, particularly some of the subspecialities who donµt really think in terms of functioning as much as in diagnosis. Now, does that mean that they canµt be educated and convinced? Absolutely not.
DR. KRAMER: If you can get them to go to training, right?
DR. IEZZONI: The way that they train them in ICD-9 or CPT right now is to threaten with the Inspector General coming and inspecting them for fraud. We will let Jayne off the hook. Michael, do you want to answer Paulµs question about how far away we might be from implementing this routinely for administrative data collection?
DR. WOLFSON: Let me give a multiple answer since Jayne put on the table an intermediate option which is donµt implement the whole thing at once, just a piece of it. Let me also observe that my talk or comments were principally at the top level of the classification and as Jayne showed, there are a myriad of items down at the leaf or detailed item level. My meeting of the detailed items is there are lots of good ones and there are still some that I find rather vague or inappropriate or unclear.
It is imaginable to say one would adopt a pot full of the items sooner than later, a couple years would be nice. Again, I am torn between on the one hand getting it right. I donµt think it is. On the other hand, maintaining and building momentum which is getting started. The gap, Jayneµs initial overhead, is so huge between the kind of clinical information that is currently routinely collected and the almost complete absence of the non-clinical descriptions of how people function that getting started one way or another is something to which I would attach a lot of priority.
I cannot resist a little anecdote about are doctors ready. I have an acquaintance who did a Ph.D. on how discharge nurses in hospitals and intake nurses in nursing homes quoted exactly the same individuals with the same questions. There were substantial differences.
DR. IEZZONI: Yes, that has been found in the rural studies. Dr. Andersson, do you have a comment on Paulµs question?
DR. ANDERSSON: Actually, it is not easy to answer. The coding is important to understand the problems with lawyers. They have different perspectives. Lawyers tend to want a precise definition of disabilities. For example, the organization of Americas, it is OAS, the acronym, they have discussed this issue and come up with a new policy that deletes discrimination against individuals with disability. For two days they had discussion and they continued and their whole discussion was about the definition of disabilities. The lawyers were trying to grapple from who and from other agencies, the ADA and so forth, to define what a disability it. So if we are coding it is limited to research and you have to move it to the different countries for them to consider how they would like to define disabilities.
For example, in South Africa, the government has already disbursed a paper announcing that they refuse to accept the word disability or impairment. They want to use only the word activities and participation for counting the census.
So it is very interesting to see how South Africa has succeeded in dealing with this issue.
DR. IEZZONI: That is interesting, having that cross-cultural comparison. I just glanced at my watch. We are a little over time. As my colleagues have said, this has been a great morning. Let me see whether there is any pressing questions in the room and I would like to ask one final which will hopefully be a quick question. Is there anybody, is anything really burning?
DR. HANDLER: I have a comment.
DR: IEZZONI: Really burning?
DR. HANDLER: Well, it sort of puts things in context.
DR. IEZZONI: Quickly. Thanks.
DR. HANDLER: When I think of the word disability, I think of my 83-year-old father-in-law that has Parkinsonµs Disease and what he has is a whole series of things. He has trouble walking. He has to go to therapy. He is deaf in one ear completely and he needs a hearing aid. He has to walk with a cane. Sometimes he forgets where the cane is and basically you have to personalize the definition so that a layman can say these things, not a clinician, not a medically trained person, would say am I disabled or am I not disabled and what are the problems you have in functioning.
DR. IEZZONI: Thank you. As Jayne pointed out, we really donµt want this to be a project about disability. It is a universal issue. Everybody gets around in a way, thinks in a way, has emotions in their own way so what we really want to make sure that we do in this process is to assign everybody or think about everybody as we are thinking about these kind of classifications. Jayne, how long has ICIDH, the second version, been in the workings? How long have people been working on it?
MS. LUX: Well, I guess the groundswell of effort started, chime in here, Paul or Gerry, if this is not your understanding, but in the early 1990s it became clear that people were feeling that there was the need for a revision of the 1980 version based on both changes in health care as well as in how we viewed and defined disability and then from there alpha, beta, all the way down the line. Probably with the effort starting at full steam around 1995.
DR. IEZZONI: Okay, because I am interested that we are at this precipice that Dr. Wilson has described where we have a convergence of kind of a WHO imperative to put a resolution on the table and yet the folks out in the field are still trying to collect information about how this is really working and then Dr. Andersson mentioned that some key groups that might have opinions about this that would be very valuable for the WHO to factor in have not yet had the opportunity to express those opinions.
And so does anybody knowing the WHO process envision that if they do as Dr. Wolfson suggests which is adopt a very general resolution supporting this, could there be significant revisions of this or would it be kind of as it is now for the next 10 or 15 years and an ICIDH three would be what people would start working on in maybe five or ten years?
DR. PLACEK: I attended the heads of ICIDH meeting two weeks ago in Geneva and it is acknowledged by WHO and expected by the heads that there will be a coordination and maintenance procedure similar to ICD-10's with annual changes allowed, encouraged and needed because I donµt think anybody has got the energy to go through this even within the next 10 years.
DR> IEZZONI: Good answer actually. Although Dr. Wilson wants some fairly significant changes. Michael, do you have a comment on that?
DR. WOLFSON: My concern is that is whether the process of change that is envisaged is one only of incremental change, or one that can address what I see as more fundamental issues and I am really concerned that if it gets blessed in May of 2001, the scope for change will be very incremental.
DR. IEZZONI: Okay, well, I would like to just thank everybody. This has been a terrific start of our sessions. I hope some of you will be able to stay around.
We are going to take a lunch break now for those of you who know the penthouse. It is not an aptly named place but it is on the top floor. There is food available up there and we will, but there is also concession stands and things outside if people want to go outside and see the pretty day. We will get back together around 12:30 or so for the afternoon session.
(Whereupon the meeting recessed for lunch at 11:44 A.M.)
DR. IEZZONI: Gerry and Paul, you are conferring over there. I guess the two of you have switched order. The first panel this afternoon, we are waiting for everybody to get back in place. This afternoon our first session is on training on ICIDH and I think that Michael Wolfson actually kind of laid down the gauntlet this morning in a way in his talk by talking about some of the reliability and interrater kind of differences issues and how people view the definitions and whether people find the direction, something that can interpret consistently.
So Jerry and Paul, I think you two are switching order. Is that what Paul told me? I want everybody to notice Paulµs tie. It is extremely patriotic. I guess he feels he comes from the shores of Eastern Maryland to the big capital and so he has to show his deference.
DR. PLACEK: When in Rome.
DR. IEZZONI: When in Rome. Okay, so, Paul, do you want to get us started in the ICIDH training. And again, for people, we are live on the Internet and so folks, you are going to have to speak in the mike loudly.
DR. PLACEK: I had intended for this to be a Powerpoint presentation but we have been having technical difficulties for the last 45 minutes or so so if they do get it started, I will pick up where they come in, otherwise I will work from paper.
DR. IEZZONI: Do we have your slides? Have they been passed around? Which ones are they?
DR. PLACEK: The paper says overview of three city rollout of WHO studies one, two and three. This has about half of the Powerpoint screens I wanted to show you.
This is a handout that both Gerry and I will work from. In May of 2000, the National Center for Health Statistics sponsored a three city rollout of Code IDH-2, a training school which the need for training schools was alluded to this morning and also the conduct of the three mandatory WHO industry protocols, studies one, two and three. There are eight protocols.
Study one is linguistic analysis and translation. Study two is consensus conference. Study three is actual coding. And we used Code IDH-2 which I am going to describe for the coding. We also connected the Canadian A and P study. And the trainers included Drs. Swanson and Carruthers from Western University who developed Code IDC-2; WHO representative Naned Costancek or Jerome Bickenback; Naned did the first two and Jerome the last one; and NCHS representatives Gerry Hendershot at the first event in the Minneapolis, Minnesota area. I attended the second one in Pomona May 22-23 and Marjorie Greenberg the last one May 30-31 in Hyattsville and I was there, too.
Around 30 persons attended the three around 10 or 12 at each of the three sites. They coded about 135 WHO cases or scenarios. There were 25 to select from. We randomized them. Gerry will tell you a little bit more about that later.
Study two was a consensus conference question. The complete results of the consensus conference are in the handout. There were two consensus conferences in Minnesota. Because it was a larger group, we split them into two. There were one each in Pomona and Hyattsville. So it was an abbreviated consensus conference which we did over several hours. You can take two days to do these things because the so-called 11 questions that WHO has are really like 50 questions because they are part A, B, C and so on but we did what we could do with five of the 11 in a couple of hours.
I am going to tell you about Code IDH-2. I want you to go to the second page of your handout and there is attachment two, how to get to Code IDH-2. You can read that but the point is that anybody with a PC who can search the web can get to it and register free and be on it in five or ten minutes. In the first month or so most of the people who are on it were the people in the three workshops but others were invited to join as well.
In the first month, about 55 people went through the courseware and there were about 2,500 hits on the site. In the second month which is the past month, I am not sure what the statistics are on that.
The training tool was developed under contract to NCHS by Western University and I want to take you to the first screen which is page 12 in your handout. The tool was a collaborative tool between, developed collaboratively between NCHS and CDC, Western U., and WHO. This is your first screen when you log on. If I had a PC linked live to a web right now this is what you would see. If I had a Powerpoint presentation, you would see it up there and I would be using this to point out little parts of the software.
The objectives are to provide a web-based adult learning environment. It is somewhat geared for its prior ICIDH users but a number of the 30 individuals we have in the pre-rollout had no background at all, either with ICIDH 1980 or ICIDH-2 but many of them knew something about one or the other.
The courseware is designed to let people code and give them immediate feedback with their coding attempts. The courseware is designed to be accessible, free, anywhere, any time and it is only in English right now. It will be around until May 2001 when ICIDH-2 is finalized, assuming that course of events stays on schedule.
The ICD, I am messing up ICIDH-2 and Code IDH with IDH being the training tools, can be used to code your own clinical cases if you want. You can use it in your own profession. You wonµt get any feedback on whether your answers are right or wrong, however. But there are 16 places within code IDH-2 where you can actually code up cases and check your answers.
Page 13. This would be the next screen you would see and you can see at the top left it says log in. So if you log in and you can start using it immediately or you can create an
account if you are a new user and I told you how to do that before.
The courseware includes an overview of ICIDH-2. The whole taxonomy itself and you can code with feedback. There are also hot links to other major ICIDH sites.
Page 14, the next screen. Where am I going and where have I been? There are, as you see at the left, there are eight major sections in the courseware. If you click on the fourth one down which is called course documents, two things would come up. First I would point out that anything in the system that is underlined gives you more information so if you click on IDH-2 documents you get more information or if you click down the WHO field trial documents you would get the AIDS studies that WHO has approved. Also, anything with a plus sign gives you more information so in the box on the top right you will see push contents and if you click on staff information, the second one down, you will find more information on people who have contributed to developing this courseware.
It was developed, really a crash project I must say, over the course of around four or five months although it was in the planning and the works generally for longer than that. I would say it was probably finished almost the day before the first rollout and we even made some fixes during the first rollout. It shouldnµt be viewed as a static training document. I think we are going to upgrade it and approve it as we go.
Page 15. So if we click on first document we will see code IDH-2 documents and WHO field trial documents and letµs say that we click on code IDH documents. It is a single click of your mouse and that would get you to the next page, frequently asked questions and leaning points and then you can select which of the two you would want. Letµs click on frequently asked questions and experience has shown us that these are the most frequently asked questions. I will review some of them with you.
We use this ICIDH. What is the purpose in using it? What it is for, what it is not for. Is it just about semantics? What is so important about the code? Havenµt I always understood function? What is the relationship between impairment and ICD, that is, the overlap, there? What is the difference between activity and participation.
What is the difference between the two-digit version and the four-digit version? What are the codes comprised of? What is the difference between ICD and ICIDH?
So the next page, 15, looks at how one of the frequently asked questions is answered. What is the difference between the two digit and the full version? It is, of course, level of coding but included is the coding and example in the text that says the simplest different is the numeric code. A two digit version of moderate night blindness is B210.2. For example, B is body function, 2 is the chapter, 10 is the code and .2 is the qualifier. We will look into qualifiers a little more later.
Now there is more explanation. You see at the bottom of that page, ICIDH-2 uses an alpha numeric system whereby the letter B means body function, S means body structure, A is activities, P is participation and E is environment so you always know which section of the classification you are in by the first alpha numeric letter of the alphabet.
There are also 10 learning points. I mentioned learning points a minute ago.
The 10 learning points are, and it takes about two hours to go through the courseware on the computer and I only have 10 minutes so I am really skimming over the surface here. But the 10 learning points are finding an item that you have some notion of what disability you are interested in, how to qualify that item with decimal point two or whatever for level of severity, differentiating illness and function, the difference of a label, the difference between body function and body structure, differentiating types of activities, identifying assumptions about activities, participation on how it affects classification, the environment and the use of barriers and facilitators to describe the effective function.
If you go to page, no, that is not on yours. With the learning points are a chance to practice so before you actually code up any of the 16 cases within it, there are 16 practice cases, the learning points let you code little sections and highlights and explain why you would code a certain way.
Now, page 15 it has one of the frequently asked questions. External links, letµs go to that. It is under external links or hot links. You can stay within Code IDH-2 for all of your learning exercise if you wish or if you want you can click on the WHO search engine and click and jump into the WHO website and use this search engine.
There are also other hot links such as there is the Dutch ICIDH website and they have it in Dutch and English. Obviously we go to the English version. And their reference to 2000 ICIDH 1980 articles. There is now also a Spanish ICIDH website in Spanish and English and we hot link to the Spanish website. So anything that is ICIDH related we have hot links to.
Page 17. Searching the taxonomy. At the upper left you will see three little books, body functions, chapter one, mental functions, global mental functions and B110, consciousness functions. So if you click four times you will be getting right down to the level of the code of B110 and what is on the handout will appear on your screen so you will have B110 consciousness functions and here consciousness functions are explained with inclusions, functions of state, continuity and quality of consciousness, et cetera, and exclusions, things that are not included in the B110 code. I hope I am doing a good job. If I am not, I have given you the 1100, finding of consciousness, stupor or coma.
It is easy enough to search the taxonomy. The taxonomy has about 2,000 codes. And four clicks gets you to the level of this being one of the 2,000. Along the right, on the bottom, you will notice you can scroll for the rest of B210 and you can continue to scroll just as you do when you surf the web.
Page 18 explains qualifiers. On the left you will see a little page with the word qualifier. So if you click on the word qualifiers, then you will see how qualifiers are explained. And so a .0 means no impairment and .1 means mile, .2 means moderate, .3 is severe. As you scroll a little more you see .4 being total.
Page 19 on your handout shows you the first part of the index. You can search the index just by inputting the letter A and click search. That would get you to the very first part of the index but if you type in something more specific like DYS, then you will go right to the Ds and all of the parts of the classification that deal with dysfunction of or whatever. Whatever might start with days. So you can click and search into any part of the 2,000-item index that you want very quickly.
The items are either italicized or not and this is an indication of whether this is an inclusion or exclusion. The inclusions are italicized. That way you know whether it is something that is part of the code or is not part of that code. WHO does not recommend a coding from the index but once you get familiar with the classification it really is not too hard to code from the index because all you need to work with is, if you work with key phrases then you can just enter the first few letters of the phrase you want to try to classify it. And if you understand where it should go conceptually in the scheme, you understand that the bodyµs structure or an activity or an environmental factor, you can almost quote from the index but that is not recommended.
Note at the bottom left of that screen it says send comments to ICIDH-2. Those will go, right now they go to Gretchen Swanson or Leann Carruthers who wrote this under contract for NCHS. We hope to have them write code IDH-2 final after the classification is finalized. We are still learning a lot about this training tool and getting good comments on it.
The next page which is 20, 20 is a quiz, this is a 16-item quiz but we can change it to as many items as might be useful so you can take the quiz and then send your answer in. Basically what that does is allow you to get feedback on whether you are correct or not. If you see it has question one, zero points, question two, zero points. So there is the possibility for scoring each question with a number of points and then you can give yourself a grade at the end if you like of 100 points or whatever. We did not do that in the workshops because we didnµt want anybody to feel like they were being graded but it would be used in a more formal training program for certifying something.
What we know so far based on seven weeks of feedback is that the ability to successfully use code IDH-2 is dependent on two things, prior exposure to ICIDH, if you know something about it conceptually before you jump into it, it is a lot easier to get around and code IDH-2 and secondly computer experience. If you are used to surfing the web, it is a snap because it is doing that but if you are not used to searching the web, it is going to take you a while. But we had folks who had neither ICIDH experience nor web surfing experience and they still managed to get through the courseware in a couple of hours, three hours. Those people are about ready to code in about two hours. They were ready after two hours on the computer to try some of the 25 WHO cases.
We also got some good anecdotal reports of, and positive response to ICIDH-2 like they were getting it, seeing the big picture, seeing the need for ICIDH-2 and the need for broad dissemination.
We are not planning revisions and we hope to do the code ICD-2 final version, hopefully we will start that in the next couple of months and finish that next year when the revision is approved. I think that is enough.
Now, Gerry Hendershot will talk more about what happened on day two of the two day rollout. Day one was pretty much explaining ICIDH and getting familiar with this learning tool.
DR. NEWACHECK: While Gerry is getting set up there, can I ask you a question, Paul, about your handout on page 19? This is one where you had the list of qualifiers. I was just curious reading this. This was not part of your presentation but your list here has some, it seems like fairly odd categorizations of qualifiers, like, for example, T-920 is access to collecting coins, stamps or antiques. It strikes me that that is a level of detail that seems kind of odd in a way. I mean, that is so specific but then there is another one, P-920, further down that is access to hobbies. Presumably stamps are a hobby. Would the coder put both of those things down? Both of those qualifiers?
DR. PLACEK: The coder would code to the highest level of specificity.
DR. Newacheck: So they would use the stamps if the person was a stamp collector but if they were a toy train collector or something, they would do hobbies?
DR. PLACEK: In general the instruction would be to code to the highest level of specificity so one would code to the fourth digit if you could, even including the qualifier if you could. The instruction to a coder in my view would not necessarily require coding to the fourth digit though.
DR. IEZZONI: These are best defined by the same focus. This is kind of an indexing for somebody.
DR. PLACEK: So day two, here is what happened day two.
DR. IEZZONI: Okay, day two, Gerry, is this your, the paper copy of what you will be showing? So everybody has this.
DR. HENDERSHOT: The first day of the two day conference was devoted to training for the most part. The second day was primarily testing. WHO has, as Paul says, eight test protocols that are being used by WHO ICIDH collaborating centers and task forces around the world. Three of those are mandatory. Study one is what is called linguistic analysis which consists of translating from English to the native language, whatever that happens to be and making note of any problems with translation and reporting or using a standard protocol.
Since it was written in English we didnµt have to do that; however, we are asked for the linguistic analysis to go through and look for terms that might be expressed better in American English than they are in the English in which it was written. We have not done that yet but we will do that soon.
Study two, the second of the required protocols is so-called consensus conferences on basic questions. The basic questions were a set of issues, posed in the form of questions which arose during the revision process which needed further discussion. For instance, the simple one was what should the title of the classification be? There are some options still open for that and there were a series of such questions.
Study three is actually coding cases. It was studies two and three which we did on the second day of our rollout conferences. We also did the Canadian AP study by an agreement with the Canadians so we had a lot to do in those two days and one of the results of that was that for study two, we didnµt do the full set of consensus questions that were prepared by WHO. Instead, we consulted WHO staff and settled on just five questions that we would focus on in these three sessions.
Is the ICIDH-2 needed in your specialty profession? What are the potential uses of the ICIDH-2 in your specialty? Is it a meaningful classification of functioning disability in your speciality? Is it useful to event differentiate body structure and body function? That is one distinction and between activity and participation? Another distinction. And finally, are there any general concerns or questions that you might have?
So these are the questions we address in what we have been called consensus conference. I put consensus conference in quotation marks in that overhead because in fact some of these sessions were conducted more like brainstorming sessions and there were consensus sessions, that is, an attempt was not made to narrow the range of difference of opinion in the group.
To give you some idea of who is attending, some of the characteristics of the group. Predominantly female, average age 46 but that ranged from 26 to 60-something. The largest group occupationally were in the rehab therapy nursing areas. Predominantly in physical health fields, not mental health fields although there were a few in mental health and the average years of experience in their line of work, 22 years so this was, by and large, a very experienced and professional group.
What I am going to do is just briefly summarize some of the things that came out of these several consensus conference. Paul said there were four, two in Minnesota, one in California and one here in DC. First question was is the ICIDH-2 needed in your specialty, whatever that is? We found a very strong consensus, a positive consensus, that is, the people in these groups felt that yes, the ICIDH-2 or something very like it was very much needed in their specialty profession.
The reasons that they gave emphasized the need for standardization and nomenclature and including the extra medical dimensions of disability. I just want to note that these are characteristics of the general conceptual framework so that what people found attractive and needed in their profession was this aspect of the general conceptual framework, not the detailed codes. I think you will see that coming out again in other results.
When I say strong consensus it doesnµt mean necessarily that everybody agreed wholeheartedly but the very large majority of those present agreed and usually wholeheartedly.
Second question is potential uses in your specialty. I just note that there is a very wide range of applications. Any of the potential applications of the ICIDH-2 or similar classifications that have been mentioned in these hearings were mentioned by somebody in these four consensus groups so people in these groups and this range of professions saw the full variety of possible applications of the application.
The broad categories of uses, I wonµt obviously go into the detailed uses that were mentioned but they included assessment, research, communication, education, and health care and service delivery. The full report which you have before you gives you some detail on that.
All groups said communications among professions
would be enhanced. This to me, certainly in Minnesota and I think also from the reports I read, from the other consensus conferences was one of the most important applications in the classification mentioned by these people that would enhance communication in a variety of ways and at a variety of levels. The thing that sticks in my mind but what was said in Minnesota is the way different professions have to interact in following a course of care for a patient and what difficulties they have in communicating with one another as they pass off a patient from one professional to another and they really need in some kind of a universal language which they thought this classification would provide.
Interestingly, they differed in their opinions on the utility for administrative uses of such payment applications and the group I was in in Minnesota and you can read the write-up on that, they very strongly felt and it was a true consensus, a strong consensus, that it would not be useful but the barriers that they saw were barriers in the present system that would make it difficult for them to adopt this new technique.
They thought it would not work because of those barriers. Other groups, judging from the reports they got apparently thought it could be used. Maybe they thought those barriers could be overcome.
The third question was is the ICIDH-2 a meaningful classification of functioning disability? Again, there was a very strong, positive consensus across the groups. It was a meaningful classification of functioning and disability. Some groups noted that the detail of the classification makes it useful in many applications but also makes it difficult to learn and use reliably. In other words, there was this tension between what they saw as the complexity of the classification which is good from the point of view of making it applicable for a wide range of uses but on the other hand, difficult to learn and to apply reliably.
Fourth question, and this is perhaps the one of greatest interest given this morningµs discussions. Is it useful to differentiate between body structure and body function which is one of the distinctions the classification makes. And is it useful to distinguish between activity and participation. Now, to Dr. Wolfsonµs surprise I am going to say the groups focused on, first of all they focused on the activity and participation distinction and they found a strong positive consensus which is not what was found in Canada as it was reported to us this morning. It may be that the way the question was put in the US is somewhat different. Is it useful to differentiate between activity and participation, not does this particular attempt to make that distinction work for you. Everybody in the groups that I was present in and had heard reported on in the United States seemed to agree that it is useful to make that distinction but we didnµt focus on the question about whether it was actually made by this classification.
They felt that the distinction helps to understand the relationship between, I am talking now about the distinction between activity and participation. Helps to understand the relationship between dimensions of functioning disability. That is useful in terms of understanding things. Also useful in planning interventions. That is, is the problem in the person or in the environment? Having the distinction made in the classification is useful in helping to decide the approach to a treatment sequence.
The last question in the consensus conference, do you have any general concerns or questions that you want to bring up. There were comments on the classification in particular things such as the pace and safety as a criteria for functioning that is, this was in a Minnesota group which said we ought to account more in the classification for the rapidity or slowness at which people can perform activities as a criterion for functioning and also we should include the safety with which a person can perform an activity in evaluating its functional value.
There were also comments on implementation of classification. There were calls to develop a short measurement instrument and develop coding rules and standards and to overcome resistance and inertia in the existing concepts and practices. So those people who liked the classification basically but were skeptical about the ability to introduce it and implement it in this country.
I am going to switch now from the study two which was a consensus conference on the basic questions to study three. Study three was an actual attempt at coding, practice coding and the way the protocol was set up, you could use actual live cases, that is, actual persons or you could use standard cases that were developed by WHO. We used the standard cases, there are 25 cases. We grouped them into groups of five, randomized them within groups and assigned them to individuals so that all cases got coded by some number of people. All of that information was entered into standard spreadsheets provided by WHO and sent off to them by e-mail a couple of weeks ago and that is going to be combined with information from other sites and analyzed by WHO.
So this is just the beginning at analysis and I wanted to give you a few indications of how people felt about this coding effort.
These are averages across the 25 cases. The ease of coding ranging from one to one meaning easy to five difficult. How meaningful the coding was of cases and the length of time and minutes to code the cases. These are averages. So the average ease was 3.1; the average meaningfulness, 2.3; and the minutes to code 24. That is a lot of time on average. It didnµt vary a whole lot from case to case. Some were shorter than others but it did take along time. Many of these people, remember, however, were new to the classification.
I have given you, in the handout, a couple of cases, one of which was rated by the coders as very meaningful and easy to do. This is the case of Roberto, a 25-year-old male who is HIV positive, shunned by community residents. He lost a teaching job due to fears of the parents of the children he is teaching and he canµt get insurance coverage due to his HIV infection.
That one they found easy to code and you can take a look at it and see what you think. They found easy to code and found the results meaningful.
The other case that they found difficult and not very meaningful in terms of classification was Silva, a 30-year-old homeless man, a long-term drug user, low functioning on activities of daily living, not working or trying to get work, in effect a discouraged worker and most people shunned him. This they found difficult to do and the results not very meaningful.
This is the kind of analysis we expect to be doing more of, looking at particular cases which are indicated by the statistics that have been a problem for the coders and trying to understand what it is about those codes that were, those cases that were difficult.
At the end of their coding experience, they were asked to rate the different dimensions of the classification with respect to several different characteristics. One being confidence in coding. So how confident were you that the codes you assigned were accurate. Overall, in your experience with the coding of the four or five cases that you coded. The first mentioned being body function, averaging 3.7 where one is low and five is high. Body structure, 3.7, activity 3.8. We should see a difference between activity and participation one would hypothesize, if the distinction between them is difficult to perceive. We got the same score here so that is some evidence that people are not finding that to be a problem. Also 3.7 for environment. So not very much difference from the dimensions with respect to the estimate of the confidence people have in scoring in those dimensions.
We also asked them to rate the ease of use overall in the same five dimensions. They go from 2.5 for body function, 2.6 for body structure, 2.6 for activity, 2.8 for participation and 2.6 for environment. Participation here gets a little higher score indicating less ease of use and that may be important in interpreting those results.
Finally, they were asked how meaningful the different dimensions were based on their coding experience and results are again with one for very good and five poor, body function 1.8, body structure 2.1, activity 1.7, participation, 1.7, environment 1.8. The scores for meaningfulness are higher than the scores for ease of use and difficulty which would suggest that they do find thing a meaningful way of thinking about things even if they have some difficulty in assigning particular codes.
As I said, this is just a preliminary analysis of some of the data we have collected. A more detailed analysis will be done by us and also by WHO which will be combining data from many different sites around the world.
DR> IEZZONI: Okay, could we stop for clarifying questions for Paul and Gerry before we move on to Dr. Wallace.
DR. NEWACHECK: This is a question for you, Gerry. Do you think there are selection bias present in these results? They seem very positive and they are perhaps a little different it sounds like than the Canadian experience. Do you sense that maybe these people who came to the workshops were people who were more interested in measurement issues and classification issues perhaps or at least more open to new ways of thinking of new things than an average audience would be?
DR. HENDERSHOT: I think that was the case. The only exception was an economist. In Minnesota, as you will hear later I think from Judy Hawley, has some experience with the ICIDH already so I think that the people who came there came with an expectation that they would be, that they would like what they found and maybe they have already taken a look at the ICIDH-2. So I would have to say there.
In the other two sites, I donµt know. I think in Washington it was more diverse from what I have seen than it was in other places.
DR. NEWACHECK: Are there any plans to try this in a group that might be more, letµs say, non-volunteers in some sense, kind of the rank and file health care workers who might have to use this in the field who may be less interested or excited about it?
DR. HENDERSHOT: It certainly would be desirable to try it with other more representative groups. Currently we donµt have any plans to do so and we donµt have the resources to do it. The events we had, that we did, we were not able to offer very much of an incentive to people to participate so we have to depend on their good will and interest in the project.
DR. IEZZONI: Although, Paul, I might be overstepping things but I think that it is true that this had to be a biased sample. Or a self-selected sample, letµs use some more positive way which, along with what ICIDH is trying to do itself, use more positive language, is obviously a self-selected sample. It is also a sample of people who this is their bread and butter clinically. This is the way they were trained to think and so it is very consistent with the thinking process.
I am a little bit concerned about our input back to WHO based on this kind of a sample. Gerry, how are you planning, and Paul, how are planning to feed back the, quote, consensus information to WHO in a way that will make clear that this is not a representative sample, that it is people who voluntarily chose to come and came from professions that typically this is what they do.
DR. HENDERSHOT: I think we will say just that.
DR. PLACEK: Let me add a comment. We sent specific letters of invitation to around 250 of our closest friends.
DR. IEZZONI: I got one of them. I didnµt come but you sent it kind of late, Paul.
DR. PLACEK: That is right. It was on short notice. We had, we could have accepted up to 66 people in the training, depending on the number of PCs we had available at the sites. We didnµt turn anybody away, though. So we sent letters to 250. We also made announcements through Interagency Subcommittee on Disability Statistics by e-mail and that went out to about 1,000 people so we were not trying to select people with certain viewpoints. This was open to anyone who was willing to spend two days and in most cases on their own dollar.
DR. IEZZONI: Exactly. They had to travel to get to the place. I mean, I would have love to have come if it had been in Boston but there was no way I could add another trip. So I think that is absolutely true that you didnµt turn away anybody but I think that it will be important to convey the types of folks that did come and the fact that it was voluntary.
Can we just ask before we hear form our next two speakers, Michael Wilson was referred to a couple of times and to contrast your result. Do you have any comments on this? Okay, no comment.
DR. PLACEK: Just one more comment. There are a couple of people in the room besides Marjorie and Gerry and I who attended. Gloriajean Wallace, you will hear from her, Jayne Lux, although she wasnµt talking about it, about her participation at the time, Juan Albert Torio(?) who did our Spanish translation and Michelle Hanson and Judy Hawley. Did I miss anybody? So if you want, shall we say additional comments, those people would be able to provide them.
DR. KRAMER: I just had another quick question related to the methodology that was used for that consensus conference, the consensus groups themselves. Who ran the consensus group and how was it run? Was it sort of like a focus group situation where different comments were given or was it sort of a self-administered type of a survey?
DR. HENDERSHOT: Paul can correct me about the other sites but in Minnesota where we had two groups, one of the staff, myself in one group and Gretchen Swanson in the other acted as moderator and we just went through the questions and asked them opinions and encouraged them to talk among themselves and tried to reach some degree of consensus among themselves on each of the questions and recorded the results.
DR. PLACEK: In my group, Gretchen Swanson was moderator and Leeann Carruthers took notes on PC and what you have is verbatim. These are not distilled or edited comments.
DR. IEZZONI: I think it is important to highlight that both Gretchen Swanson and Leeann Carruthers, this is what they do for their work. They have a strong interest in making sure that people understand and appreciate this method.
DR. PLACEK: But all comments were taken down, whatever they were.
DR. IEZZONI: I know, but there is a technique for doing focus groups where the moderator is presumed to be very objective and separate from the issue although informed enough to ask appropriate follow-up questions and so on and that wasnµt the case here. That doesnµt devalue what you have done at all. It just means that we need to understand exactly what it is that you have done and from understanding that, we can get a sense of where it would fit in terms of an overall evaluation of peoplesµ views of ICIDH.
The results are interesting and it is interesting that they didnµt find the same kind of difficulty that Michael Wolfson this morning identified between the activity and participation evaluation.
DR. GREENBERG: I might just comment on that in that we did not, as I think both Paul and Gerry mentioned, the way the two days were structured, the group did not go through all the questions. There were specific questions about activity and participation that Michael was importing the results from that actually was not asked in the five questions that were selected and consultation with WHO.
At the same time, we did do, as mentioned, an activity slash participation study that was designed by Canadian Institute of Health information. That study is also being conducted. It was done in Canada and the results are not out yet but it was done in our three city rollout. I think there are some other US researchers who are doing it. It is being done in France and it is being done in Australia and it is possible in the United Kingdom. All of the results from that study are being sent to the IHI in Canada and will be part of the results of the beta two testing that we expect to have by the end of September which, as Michael pointed out, until this very recent information, we have been under the assumption that all the information that is in by the end of September will be incorporated or at least will be reflected upon in the revision.
So there were some differences and I think unfortunately the timing and resources did not allow the kind of detailed testing that you might want to do and certainly with the other groups who do not have even the familiarity with the classification or for that matter really as much interest in the conceptual model and I think that is probably why people are pointing to the needs for a more systematic pilot testing but there were some differences in just what questions were actually discussed in the two sessions.
DR. IEZZONI: Thank you. That is very helpful, Marjorie. Are there any other clarifying questions? Okay, Paul and Gerry. Gerry, you are not going anywhere are you? He looks like he is about to take off here because we are about to hear from two folks who were, were both of you at one of these training sessions? Judy Hawley is scheduled to go first.
MS. HAWLEY: Thank you for inviting me to make this presentation. I have to say that I am both excited and nervous at being here.
Regarding outcomes, functioning and disability and ICIDH, there is so much to learn. My motto is the more you know the more you know you donµt know and I feel like I donµt know much.
I am here, not representing the American Physical Therapy Association but representing the Minnesota Chapter of the American Physical Therapy Association. I feel like I am going to give you a small town perspective of ICIDH and how clinicians in Minnesota have used this.
I am a physical therapist and I am director of practice and policy for the Minnesota Chapter APTA. I am here representing the Minnesota chapter and it is a volunteer-run non-profit organization and we represent about 1,500 physical therapists in Minnesota.
I was involved, as you said, in one of the rollouts and some of my comments will reflect that activity as well.
I think it is important to note that physical therapists do work in a variety of settings. We provide services ranging from health and wellness to direct patient care, post-injury or disease. We see patients with musculo-skeletal, neuromuscular, cardiopulmonary and intigumentary conditions. Our patients and clients do range from birth to death.
My comments reflect a concerted effort by members of the Minnesota chapter to study and investigate the feasibility of using ICIDH as a tool to assist our chapter in measuring outcomes in a meaningful way. As physical therapists, clinicians, researchers, educators and administrators, we strive to improve the health condition of our patients and clients. At our chapter, our overall goal is to provide services to our members that will allow them to improve their provision of services in an efficient and effective manner.
Over 10 years ago, we identified the need to measure outcomes because we felt we needed hard data in order to accurately portray what it was we were doing and from there to assist us in improving how we provide those services. It was at that time that the Minnesota chapter established practice-based outcomes workgroups bringing together physical therapists with common interests and common concerns. At this time our most active outcomes workgroups are in the areas of pediatrics, older adults and orthopedics.
We have long recognized that physical therapy operates from a disablement model, not from the traditional medical model. Our education has prepared us to deal with the consequences of disease, injury or health condition. An important role of the physical therapist is to be responsible in identifying those factors outside of physical therapy that may influence outcome so that appropriate services are identified, advocated for and provided.
I think our society is crying out, whether it is the patient or the client, the provider, the insurer, the legislator or the regulator that health care must be provided in an efficient and effective manner. We must be studying outcome. That will allow us as professionals to identify efficient and effective care.
Approximately six years ago the Minnesota chapter was introduced to the old red book and we really started looking at it at that time. We made a commitment to strive to use ICIDH to assist us with classifying the consequences of disease, injury or other health conditions, whether it be at the body level, the individual level or at the society level.
As a chapter, though, we have looked most closely at the level of the person, the activity and activity limitations section. We have only really superficially worked at the impairment and participation dimensions. My comments then will really just reflect our stay of the activity section.
The first questions that I will talk about are use of ICIDH to capture functional status on routine health care claims and what would we recommend about the routine use of ICIDH in administrative health care claims.
I do think it is very appropriate to capture functional status information on health care claims and I look forward to having the opportunity to do that. If the purpose of the health care claim is to submit information in order to be paid appropriately for service rendered, the more accurate the information, the more appropriately the claim is paid. Physical therapists work in a disablement model and I think ICIDH will capture that functional information that we are looking for. I do believe, though, because we work with health care providers that work in a medical model that we need to be capturing both sets of information.
For a reimbursement system to be meaningful, it must capture information that relates to the condition being studied. ICIDH would be a system that if adopted nationally would be used routinely to capture that information and that information is what is important to the physical therapist.
Currently only ICD-9 information is submitted on physical therapy health care claims so that patient who has a CBA is quoted with that medical diagnosis. Some patients with CBAs have difficulty with gait. Some do not. If a physical therapist could code what they are treating, for instance, gait dysfunction, the picture created for the insurance company would be more accurate and complete.
The whole concept of disability is complex and at the Minnesota chapter are struggling with this as is the rest of the world. Because disability is the product of many different factors - physical, behavioral, social, environmental, et cetera - we in health care must realize that we are only one part of this complex set of factors. I believe ICIDH will help us to get a better handle on the reasons for disability from a health status perspective, thereby giving interested parties both inside and outside of health care direction for future work.
I donµt think we can wait. We must have a way to code the consequences of disease, injury and other health conditions and I would urge us to move forward.
I will talk a little bit about the logistical and feasibility barriers and the conceptual barriers and what we think can be done to overcome these.
First and foremost there must be a willingness to use the classification system, and I think the key to adoption is that this system allows us as physical therapists to paint a better picture of the patients and clients for whom we provide services. We must have a way to study this, to study the outcomes of our interventions in order for us to treat the right conditions at the right time and in the right manner. This is the key reason why physical therapists in Minnesota are studying the ICIDH classification system.
We will be asking or requiring more information when health care providers are submitting much information already. Information should not be asked for without a reason and if the reason has significant meaning for the physical therapist, the buy-in will be much easier.
In physical therapy, though, we operate from a disablement model. Generally in the United States here we are more familiar with the Nagy model of disablement. That is a challenge to implementation of ICIDH and physical therapy in the United States. Though Nagy is not a classification system, it is a scheme that is generally accepted for disablement.
The similarities, though, between the two models far outweigh the differences, and I encourage the World Health Organization to be working with the American Physical Therapy Association so that we can help each other in this area.
In order for ICIDH to be accepted there must be a clear understanding of terminology and concepts embedded in ICIDH. I think there have been significant changes since the old 1980 red book and the models are closer but I believe it will be a challenge to the physical therapy community.
In Minnesota we are constantly having to go back to the basics as we discuss ICIDH. The APTA recently published a landmark document called The Guide to Physical Therapistsµ Practice. We call it The Guide which is a consensus-based document that describes who we are and what we do. I am very proud of this document and I worked diligently to try to assist others to incorporate into their practice.
One of the challenges with writing this document, though, was in the area of terminology. As a profession we learned that defining important physical therapy terms and the consistent use of those terms was foundational applying the guide in physical therapy practice. I feel like The Guide gives us a fence within which we operate but I think ICIDH will help us to further analyze how we operate.
In Minnesota we are studying how we can use both documents together to analyze physical therapy practice. One of the examples in the learnerµs version that they did out of Western University is a case study in what I call the guide language and it allows us to look at ICIDH but from a perspective that physical therapists in the United States are looking at at this point.
We are challenging physical therapy to base our practice on evidence. As a profession we embrace and promote research at all levels. We must know from a scientific standpoint that physical therapy makes a difference. I think ICIDH will help us to paint that clearer picture.
I do think that there is a challenge to successful implementation of ICIDH in the area of what I call the blurring of the dimensions of activity and participation but I donµt think it is insurmountable. I think it will require more discussion and more training. Activities at the level of the individual range from simple to complex. In Minnesota we have struggled with that question a lot. When does the dimension of the individual end and the integration into society begin?
There are many codes in the classification system and that can seem overwhelming. I like to think of the correlation of ICIDH, though, as a universal language to English being the universal language. We are a global society and as such we need to have a universal language within health care. I think ICIDH can help get us there when we talk about the consequences of disease, injury and other health conditions.
As with any language, though, it has to be taught in manageable pieces and in Minnesota what we have done as physical therapists is we have tried to break it down in manageable pieces so that it has meaning to the physical therapist. We have worked mostly on the activity section and I think you have this as a handout. This is just an example of one of the things that we have done to try to break it down into manageable pieces so that the physical therapist will use it in their everyday clinical practice. This is just the first page of a two page physical task questionnaire so we have taken more of the elementary physical tasks from the activity section. We have another questionnaire that relates and I donµt have it in your handout but I have got it here that relates to what we call problem solving and decision making aspects of the activity section.
Just as an example, in one of our orthopedic outcomes workgroups, the orthopedic one, they are in a clinic where they are typically seeing a patient every half hour to do an evaluation, initiate treatment and this was just way too much for them to bite off. They also, because they are working mostly in orthopedic, did not need to worry about as much the decision making aspect, the cognitive aspect of the activity section and so we decided to make separate self-report forms in order to be able to use it in a certain setting. That wouldnµt preclude, we also are working on developing a form that has all of the activities on it for people who are working in a rehab setting and would need to have both the elementary and the complex sections of the activity dimension.
You asked in particular about the use of ICIDH with the pediatric population. We have a pediatric outcomes workgroup that has very much questioned the use of ICIDH with this. They do see it as possible and they have really looked at the activity and the participation section and feel it is appropriate and would be useful.
As far as training, in ICIDH nobody has enough time to learn a system as well as you would like so whatever we have to do, we have to do it in multi-dimensional ways in order for people to get it one way or for it to be reinforced another way. I think the Internet is a good possibility and I think it will grow in its potential. I would encourage other forms of training as well.
For physical therapists working in clinics, their access to the Internet in order to ask questions or get answers is very limited so that is the drawback. Also, as somebody else mentioned, computer skills are varied and so if they are weak, that is definitely an impediment to learning information.
Some of the benefits to using ICIDH and how would the data be used. In Minnesota what we have done that I included in my handout is we are looking to incorporate ICIDH into a bigger study, what we call the Minnesota Outcome Study and we would use ICIDH to capture the activity and activity limitation section.
Our goals for doing MINOS, we call MINOS, Minnesota Outcome Study, and using ICIDH is to be able to capture that information that we are providing information that physical therapists have long said this is what I need to be telling the insurers or this is what the health care policy makers need to hear.
We firmly believe that outcomes information should drive clinical practice and we think the power of the ICIDH is its ability to encapsulate aspects of functioning and disabilities succinctly. We need to describe each and every patient and client for whom we provide services. We need a way to classify each aspect that makes him or her different from each person with a similar condition. I liken it to a computer image. Do you want high resolution or a blurred picture? The parameters you enter dictate the resolution of the picture. We are all unique individuals and the patients and clients requiring physical therapy deserve the best care based on the most resolute picture available.
I think we are hopeful to use ICIDH in our MINOS information in a variety of different ways. At the level of the clinic, we hope to be able to provide information to practitioners so that they can dialogue with insurers. My most extreme example and this occurred to me personally was I called for pre-authorization when I was working in the clinic. I called for pre-authorization of a person who I was seeing post anterior cruciate ligament surgery and I was authorized for one visit and that is a very extreme and arbitrary and what we felt was a very ignorant answer to our request for physical therapy intervention. I am not saying that happens all the time, but the better picture we can paint of what the patient we are seeing, the consequences that we are seeing I think that is the only way we are going to get anywhere with insurance companies.
In Minnesota we are very highly managed care and we need to have this information to be able to go back to insurance companies.
Also from a clinic standpoint, I think we can use this information as we are looking at process improvement if we are looking at best practices, if we are looking to improve efficiency and effectiveness of care. Having this kind of information rather than ICD-9 information is much more appropriate.
From a chapter standpoint, we will be gathering this information and will be able to use it as we dialogue with insurers and policy makers at the state level and we hope to do that.
We donµt have experience of widespread use of, of knowing of widespread use of ICIDH. That was one of the questions that was posed to me so I really canµt speak for that.
I think that is it.
DR. IEZZONI: Very good. Are there any specific clarifying questions of Ms. Hawley?
DR. KRAMER: Just something real quick. Have you already then used it for outcomes that you have had multiple assessments?
MS. HAWLEY: We are at the drafting and beta testing.
DR. KRAMER: And that is supposed to be done when? The MINOS study?
MS. HAWLEY: We hope to have our studies done within the next six months and roll it out after that. We have, as we started looking at ICIDH, well, should we wait, should we go ahead and we just decided we need to move, we need to capture this information.
DR. IEZZONI: Will this information to the form that the PC fills out to submit for reimbursement to the managed care company? It will be in addition to that?
MS. HAWLEY: It will be an additional form and right now, of course, as we donµt have access to all the information that is sent to governmental agencies and so we are looking at a separate form and so we have got redundancy of information and that sort of thing but it will give us a better overall picture for us as a professional association to go to insurers or regulatory groups.
DR. IEZZONI: And will you scan it in to have it computerized?
MS. HAWLEY: Logistically we are hoping to use Microsoft Access program and the physical therapist would access it and then just send it to us. Paul?
DR. NEWACHECK: Just one other quick question. Are you aware of other state chapters that are doing similar things?
MS. HAWLEY: I donµt know of any other chapter. I have asked and I have not gotten a response.
DR. IEZZONI: Are we having anybody from OT to speak to us? Tomorrow I think. Because I understood that OT, that the national association has actually endorsed ICIDH. Does anybody know? We will hear tomorrow about that. Is the American Association of Physical Therapy?
MS. HAWLEY: They are speaking tomorrow.
DR. IEZZONI: Physical therapy of the American Association, are they thinking about it?
MS. HAWLEY: Right now they are neutral on it. And over the years, the Guide to Physical Therapist Practice which has really been something that APTA has worked on really worked diligently on for the last few years has been a focus is based on the Nagy model and so I think there needs to be dialogue about that.
DR. IEZZONI: Great. Thank you very much. Dr. Wallace
DR. WALLACE: Did everyone get a handout? Does anyone need a handout?
My name is Gloriajean Wallace and I am a tenured full professor and a medical speech language pathologist at the University of Cincinnati with a specialty of communication and swallowing disorders that result in stroke in other neurologically based etiologies. My professional responsibilities entail teaching graduate students, conducting clinical research, including the development of a major assessment system and providing in-patient and out-patient rehabilitation services for US populations in rural, underserved international populations.
I have been involved with the ICIDH-2 activities since August of 1999 when the system first became available over the Internet. I have since that time participated in five WHO ICIDH-2 related activities including the recent training workshop in May of 2000 and I served as a field site coordinator for the American Speech Language and Hearing Association, ASHA, to contribute to intra- and inter-rater reliability data collection for the ICIDH-2 coding of actual cases.
To date I have been invited to comment on the ICIDH-2 in my role as test developer. Dr. Travis Threats who will present tomorrow will provide testimony on behalf of ASHA.
Approximately nine years ago I began developing a comprehensive, culturally inclusive assessment system, the reliable assessment inventory of neural behavioral organization, the RAINBO, which is currently being standardized. The RAINBO is comprised of items which are simple, functional, universal and culturally fair. These features make the RAINBO uniquely suitable for translation into other languages and international use. The RAINBO has been translated into English, Spanish and two Chinese languages. Although the RAINBO is developed independently of the ICIDH-2 which I did not learn about until August of 1999, there are amazing conceptual and design similarities between the RAINBO and the ICIDH-2 which make the RAINBO an ideal practical method for putting the ICIDH-2 into action.
The goal of my presentation to day is to familiarize you with the RAINBO as a model for discipline specific and cross-discipline assessment which enhances the quality of case profiling while at the same time enhancing the reliability, accuracy, ease and practicality of coding with the ICIDH-2 system.
The RAINBO is a comprehensive assessment system for adults and adolescence who have acquired brain injuries. The RAINBO is comprised of a comprehensive intake summary sheet, a functional outcomes quality of life measure and 10 test modules. The RAINBO assessment system provides information about profiles of performance for ICIDH-2 body parts, structure and function dimensions and the ICIDH-2 activity level dimension for the full range of ICIDH-2 speech language pathology discipline specific domains including cognition, language, motor sensory skills and speech, motor control for augmentative communication and swallowing skills that support hydration and nutrition.
The RAINBO system also includes an interdisciplinary functional outcomes quality of life measure for evaluation of the full range of ICIDH-2 domains included under the participation dimension. As an aside comment, it is noteworthy to mention that although the RAINBOµs functional outcomes quality of life measure is interdisciplinary, because communication and cognition are at the heart of all that we do, these two domains must be considered when assessing nearly all of the ICIDH-2 participation areas.
The RAINBOµs user-friendly functional outcomes quality of life measure is self-made by the person and major caregiver. Special features, pictographic materials in large print accompany the measure in order to facilitate full input and full participation during the rating process by the person who is impaired. Follow-up interdisciplinary and/or trans-disciplinary team assessment is then conducted so that rehabilitation team members have an opportunity to actually observe performance in selected areas that are of concern to the person and the caregiver. This is done so that the team can precisely determine which discipline or combination of disciplines are needed to provide the most cost effective rehabilitation for the enhancement of participation to a satisfactory level and this is giving you an example of some of the pictographic kinds of things. Are you satisfied after the person has rated their performance and then we have some special kinds of things to help people who are specifically involved to maximize the likelihood of their participating.
The RAINBO employs two five point scoring systems that allow the tester to rate performance under non-assisted and assisted testing conditions. You can look on your handout, page two, page one is an abstract and page two has a scoring system that I am talking about now. The RAINBO scoring systems are based on a five point range that is identical to the ICIDH-2. Zero within functional limits; one, mild impairment; two, moderate; three, severe; four, very severe impairment.
This provides for easy transference of RAINBO performance scores to ICIDH-2 classification in terms of performance level, need for assistance and type of assistance needed. Just to give you a really quick example, if a person is interested in finding out an individualµs proficiency level in terms of producing drawings and photographs, letµs say you have a person who is non-verbal and you are wondering if they can use drawing to enhance their communication efforts, you would be interested in, according to the ICIDH-2, you would be interested in their A-2402. According to the RAINBO, that is translated into an interest in the graphic subtlest of the RAINBO performance for a specific module called the PCCL, the Profile of Cognition, Communication and Language so you would simply go to the PCCL, find the graphic subtlest which in ICIDH-2 language is the A-2402 and you would score, get the need and figure out how the person performed. If they performed with a level two, which means moderate impairment, that means in ICIDH-2 language that their A-2402 is .2. It is as simple as that and I have another little more involved example as we continue on. You might want to look at this at the end of the presentation.
Currently pilot testing of RAINBO clinical assessment protocols is underway to determine how to best facilitate the ease of recording, documenting and tracking case performance across the ICIDH-2, B, body; A, activity; and P, participation dimensions. That is what I will refer to from this point on.
This includes the development of separate protocols specifically designed to record information about cases who have language involvement, speed involvement, swallowing involvement and so forth. Clinicians complete a form that has been organized according to standard assessment report format using standard speech-language pathology categories, orientation, language, speech or motor sensory, et cetera, et cetera. ICIDH-2 codes are provided on the protocol sheets along with the standard speech language pathology categories so that although clinicians are learning to associate the ICIDH-2 codes with customary terminology, orientation becomes B115, for example.
It is not necessary for the clinician to memorize the ICIDH-2 codes because they are provided on the protocol forms. Clinicians are asked to circle the number that best represents the personµs performance for a given category using the five point rating system described earlier. This process is proving to be user-friendly for clinicians as it greatly reduces reporting time which typically involves a written narrative report.
Technical support personnel such as secretaries find this process to be both user-friendly and manageable because they can simply refer to the clinicianµs assessment report for the ICIDH-2 codes that need to be entered into the computer data base.
A graphing system is also available which provides needed visual information for the clinician in the case about the relationship among performance for B, A and P dimensions in comparison of performance over time.
The protocols also provide space for the clinician to record information about target schools or goals to be achieved as a result of rehabilitation. Projected date for attaining of those goals and space to record the date when each goal was actually met. This facilitates determination of decisions about projected length of stay and treatment as a function of initial B, A and P profiles and determination of the most cost effective and fruitful areas of treatment as a function of case profile.
Ideas from the recent, excellent I might add, WHO-NCHS sponsored ICIDH-2 training workshop have been interwoven into the development of training for the use of these protocols I have just described which entails one, orientation to the overall ICIDH-2 system; two, orientation and familiarization with discipline specific dimensions and domains; three, practice using the protocols. Speech language pathologists and other rehabilitation professionals can easily master this system, especially the current Internet technology. The training and the protocols have been designed to facilitate and accommodate the application of ICIDH-2 coding by clinicians who are conducting assessments using the RAINBO as well as clinicians who are conducting assessments using already published assessment instruments.
Current research includes the investigation of competence ratings and the liability levels for ICIDH-2 coding when clinicians use information from traditional assessment instruments as compared to when they use information provided by the RAINBO.
Assessment is at the heart of clinical delivery. It provides us with knowledge about deficits and more importantly with information about strengths that can be used as springboards during treatment. It provides us with the necessary yardstick to measure the efficacy or the success of treatment and allows us to detect needed changes in treatment direction. Good assessment facilitates communication within and across disciplines as clinical cases move across the continuum of care. This is necessary in order to promote seamless continuity of care that is personalized and meaningful, functional and cost effective.
Good assessment allows us to carefully describe the subjects who participate in research and in this manner enhances the applicability of research findings. Good assessment provides a framework for understanding clinical management from the big picture, the participation level, to the finer levels, body part function, structure and activity which is a much needed thing for new clinicians and clinicians in training. Good assessment is at the heart of foundation of rehabilitation.
The ICIDH-2 provides a solid, conceptual framework for clinical assessment and provides strong support for all that we do as rehabilitation service providers, clinicians, researchers and teachers. This system provides a way for rehabilitation specialists to develop comprehensive yet individualized performance profiling for people who have disabling conditions. Furthermore, the ICIDH-2 has compelled us to consider the role that culture and unique idiosyncratic factors have on community re-entry. The ICIDH-2 has caused us to consider the role that family, community and society has in facilitating full participation.
Equally as important during this era of attention to diversity and globalization, the ICIDH-2 provides a means for us to assess and discuss issues of ability, disability and inclusion in the equitable individualized and culturally appropriate manner that embraces all races, all languages and all nations.
For this the World Health Organization is to be commended and I would like to thank you for inviting me to be a part of it all as we move beyond the dawn of this 21st century and begin to consider a rainbow of possibilities for full societal participation by all. Thank you very much.
DR. IEZZONI: Thank you.
DR. WALLACE: I really like the ICIDH-2. It is very helpful in terms of everything I do as a clinician, researcher, teacher, it pulls it all together.
DR. IEZZONI: As an academic, I think you are remarkably generous because you say you worked all this time on your RAINBO method and then all of a sudden the ICIDH pops up last August.
DR. WALLACE: Which is wonderful.
DR. IEZZONI: A lot of academics wouldnµt be as generous as you are. I think it is wonderful to see. Thatµs great.
Now, you do the RAINBO assessment in the context of traumatic brain injuries?
DR. WALLACE: Well, you can use it with that population. The actual research, I am using it clinically with a variety of different populations but the research that I am doing now, actually I am doing a functional outcomes study with people who have had strokes and with cauder fascia or language involvement after a stroke but you can use the RAINBO with a variety of different populations. I actually work at the university, my main position is at the University of Cincinnati and I also provide group therapy for people who have had strokes on campus but I also work in a rehabilitation hospital so the clinicians there are also using this system. It is real simple. We do what we normally do but we just give the codes to them, put the codes in the places where they normally have terminology like comprehension. Comprehension is translated into, it is fairly simple.
DR. IEZZONI: When you say the clinicians are using it, do you mean the language speech therapy clinicians?
DR. WALLACE: The speech pathologists are using it and, in fact, the person who is in charge of the outpatient rehabilitation service, they were going to use the SF-36 in terms of kind of the functional outcomes measure, didnµt like that and so now they are using Lifeware because it is available on computer. I donµt really like that because it is not specific enough in terms of looking at the whole person so we would like to use the RAINBO and so what we are doing now is we are pulling data from outpatients from 1998 and we are in the midst of data collection now with people from 1998 and we are looking to see from people who have been in multi-services what is the functional outcome and how easy is this to use with that population.
So eventually we would like to use it in the actual outpatient clinic as people first arrive but it is not on computer yet.
DR. KRAMER: Is it just the speech and the language?
DR. WALLACE: Well, you know what, I have got the B and the A broken down for speech pathologists but I also have part of the RAINBO is a functional outcomes quality of life measure that cuts across disciplines because when you look at the whole person, typically we think I am a speech pathologist, I want your mouth and the PT, I want your legs, but as we all in this room know, for full participation, you need the whole enchilada, a holistic view and so I developed a functional outcome quality of life measure that cuts across disciplines and we cross-train one another so that I can give it or a PT can give it or an OT can give it. They tell me what to look for and I tell them what to look for in a gross way.
DR. IEZZONI: I will say, you will probably understand this, I am impressed that you can go back and using retrospective chart review actually code using ICIDH. I could never do that with doctors.
DR. WALLACE: What we are doing is we are calling people and we are going and we are actually administering it to people who were enrolled in 1998 who were discharged to find out how they are doing in the real world.
DR. IEZZONI: Okay, that makes sense. I was going to say, doctorµs notes never could do that. Thank for our entire panel. It has been a very kind of, it is great to see people really excited about this. Do any of our committee members have questions?
DR. NEWACHECK: I have one for Judy Hawley about in your presentation you were talking about examples of how you can use ICIDH perhaps to work with insurance companies to help them understand patient needs and that. Is there also a value from a clinical perspective that is, or a physical therapist, to have this information to track patient outcomes or changes over time or is it something that would just be viewed as another kind of administrative burden that physical therapists would have to fill out.
I am thinking more about, because you are in the leadership position, but in the rank and file of physical therapists, would they view this as a useful tool?
MS. HAWLEY: I think it has to have that utility in order for us to use it. And what physical therapists tell us is when they call an insurance company, they want to be able to have some data from their clinic and maybe some aggregate data but also as they are looking to improve their own practice, they need the information so that they can look at similar conditions both within their clinic and maybe across the state. So process improvement within a clinic is one of our goals for presenting this.
DR. NEWACHECK: So would it be your conclusion that rank and file physical therapists would find this to be a useful tool to have if they were trained in it?
MS. HAWLEY: We have not done a formal study of that but our questions have asked that because we want to know, are we just talking about an insurance problem here. As a chapter, we are looking more at how can we improve the position of physical therapy. We want to improve what we are providing to patients, the clients. That is our overall reason for doing this. We hope to have an impact on insurance companies as well but I think from our professional association standpoint our biggest reason to do it is for personal performance improvement.
DR. KRAMER: I had a question actually for all four of you to respond to. As you know, we are talking here about using a core, some core elements potentially in administrative data. I know you have moved ahead, Judy, with particularly a focus on the activities side. I would just be interested in, from all of you, if you, what you have been learning from using the ICIDH. If you were to pick one component or the core elements of it, you would say, well, these are more ready for prime time than anything else and so if I were to step forward with something now, this is what I would use.
What would you use? What parts of it would you use, would you be most comfortable starting with?
MS. HAWLEY: I guess I will just answer on the physical therapy sampling. I think we would have to say of course the activities section but even within that, if you look at the MDS which is being used in skilled nursing facilities, required perform, that has some specific areas that they look at that are meaningful for people at the end of life - walking, ADLs, that sort of thing. I think it depends on the population we are looking at and when we devise our self-report form, we ended up doing just that with the orthopedic section, making it more so that it fit their needs but as we were looking at it with the group at a rehab hospital, we recognized the need to have it shaped a little bit differently so we didnµt come up with being able to identify some core elements because all the different chapters within the dimension have utility, depending upon the population.
DR. IEZZONI: Dr. Wallace do you have any comments on that?
DR. WALLACE: I do, and you know, I am a real visual person. To answer your question about the one slide I didnµt bring, and one of the most interesting cases I probably have seen in my entire life is a person who had a stroke and as a result had severe or lopraxia, oryngiapraxia, respiratory praxia. He canµt breathe, he can breathe but volitionally he canµt, he canµt phonate, if you say ah, he canµt coordinate his vocal cords. He canµt, in terms of articulation, in terms of his ah, he is really, really severe and we worked very, very carefully with this person at the various levels and probably the most interesting discovery of my entire career and I would not have discovered it had I not come up with this little system and been able to chat because I knew something was getting better but I didnµt know what or what. This is not exact data, this is just, but it is kind of like that.
That the person started off with zero being really good, four being really severe, started off really, really severe at the body part level and the activity level and improved a little bit in therapy. A whole lot of therapy, improved a little bit in these two domains. But doggone it, when we looked at participation, it started off very severely involved and when we looked at not only the wifeµs rate because she really had to help, he had, could not do very, very little participation even with all the pictographic materials but participation was very, very low, very depressing, very depressed person and family.
When we worked with the caregiver and allowed the caregiver the opportunity to see some kinds of things that would enhance a personµs communication to give a feel of more natural communication, then over time even though in terms of the body part in activities level, there wasnµt a whole lot of improvement at the participation level, a lot better. And had they ever known that had I not actually charted it, I knew something was getting better. They came in a lot happier as a couple but didnµt know why and it was all about the caregiver education and the impact that had on the participation level so they had one thing to give. I hate to scrap these because I like looking at the relationship, but if I had to only use one, I would go for this all the way.
DR. IEZZONI: Very interesting.
DR. PLACEK: I am biased in favor of so many parts of it. It was originally I think designed to set off activities and identify boundaries at the outer edge with impairments and handicaps and so that was originally the core. I think activities.
But I watched the development of the social participation and environment sections with in effect North Americans taking the lead on that the last few years where many think they are rather hopeless to develop those parts of the classification. I think they develop very nicely and so I have to agree with Gloria on the social participation as one of the bright spots in it now.
MS. HAWLEY: Just one other comment. In physical therapy, as we do an evaluation of a patient, we are pretty much routinely writing functional goals. We will have three functional goals for that patient and over the last 15, 20 years, those goals would change from impairment level goals, increase the shorter range motion to 106 degrees to functional goals so that the patient can do, reach up into the cupboard but really for us to have meaning as people, we have to bring that a step further to say so that they can fulfill their role in society of being a mother. I mean, as physical therapists, the concentration of our work is at the activity section but it has no meaning if the patient canµt take it a step further and then be meaning in their life.
DR. IEZZONI: This has been terrific. Let me just see if there is any quick questions from other folks around the room. No. Thank you very much. This was great. And thank you for traveling the distances that you all have to come and speak with us. Letµs take a 15 minute break and then we will come back.
(Brief Recess.)
DR. IEZZONI: Everybody is really excited by what we have learned today and this last panel of the day looks like it wonµt disappoint us either. I think we will learn a lot from the people we have, the four folks who are going to be speaking with us.
Does everybody feel okay with the order in which you are going? Does anybody have a plane out or anything they need to leave earlier for? Why donµt we start then with Nora Wells.
MS. WELLS: Thank you very much for inviting me here this morning. My name is Nora Wells as I said earlier and I am on the national staff of an organization called Family Voices. I am giving you a brochure of Family Voices because someone asked me what it is. It is a national grassroots network of families and friends speaking on behalf of children with special needs. All of the founders and most of the staff and many members are parents themselves of children with special needs or young adults.
I am very pleased to be here this morning. I have learned a great deal. I am awful glad I came this morning. I often slide into Washington at the last minute when I am doing something and I took a plane last night. I ended up seven hours in the airport in Boston with all the other people trying to get to Washington. But it was a wonderful opportunity to build camaraderie because people went through so many phases of disgust, irritation at the airlines so that at the end we were all great buddies. People were forming cardoons to get down to Washington if they had to drive all night.
Anyway, I am a parent myself of three children. My older son is a young adult with cerebral palsy. I have a young sone who is in Washington now, in Rockville now, and I have an 18-year-old son. I am particularly interested in the topic of disabilities and how people function with them because of my own personal experiences with my family and I have worked for 25 years with other families of children who have special needs and I think that the voice of families is one of the crucial pieces and I am so pleased to see this morning that you have so many people representing and talking about the issues of disability from the point of view of having experience themselves. I think that is a crucial piece of the pie when we are talking about anything we are trying to do whether we are evaluating systems or whether we are thinking about what works and what doesnµt work in the system.
I myself am visually impaired in the sense that I absolutely cannot function without my glasses in, on, around, falling off so I came here to talk about some other things but as I came this morning and listened to what was presented at the presentations, I would like to change what I have to say a little bit so you will see a handout that I had done for you. It might be of interest in another context. I donµt think it quite hits the spot for today.
What I am hoping is I can talk to you a little bit about how I think families might look at or view what I heard about ICIDH. My own personal experience with this system came about at the end of last week when I looked it up on the Internet. I got the agenda in the mail and I realized that in fact what I thought I was speaking about wasnµt quite exactly what I was thinking about, probably wouldnµt reach it at the moment so I went onto the Internet.
I was fascinated to see some of the context and some of the things that the system is talking about. I think they are enormously powerful from the point of view of how we all fit in a context of how we function.
But I want to speak with you today a little bit about specific issues that I think families might think about in looking at this system, how different families view perhaps their own children and their own childrenµs special needs and some of the complexities that I might look at in the process I heard about. I certainly very strongly support the need for such a kind of world looking at how it all functions and the goals that I heard, particularly what we talked about this morning as I understand them.
I want to bring in a number of points from a study I have been part of. I had a Powerpoint presentation, I have gotten very sophisticated in the last few years, but it is harder to change Powerpoint at the last minute than it is to pull your overheads. So this thing that I am going to talk a little bit about, I am just going to pull some points out, has a summary that I think has been passed out. It is a summary called what do families say about health care.
The study was a study that was done by Brandeis University and Family Voices. We sent out a mailed questionnaire to families all over the country and we collected information on a number of things and they are all summarized in this little book. There is a number of other things, pieces of information about the study that is on our Family Voices website.
Going back to who Family Voices are, we have volunteer coordinators in all 50 states. We have over 30,000 people who receive our information through the mail or e-mail or fax. We are committed to the idea that the voices of families ought to be part of discussions about anything that affects families of children with special needs.
This survey was mailed to families in 20 states. Just to give you a little context when I tell you about families said in the survey, the families that were part of the survey came from two sources: Family Voices mailing list which are volunteer families who heard about the idea of getting information about childrenµs health issues if they had children with special needs and so that is how they got on the mailing list and then lists of children receiving services from Title V programs which you are probably all familiar with. Those two lists were randomly selected and that is where we got the families who were part of the study.
The demographics, what we were looking for were the demographics on the child, the childµs health insurance coverage, the familyµs satisfaction with it, insurance and providers, problems they have given services, care coordination and the health care families are providing and the family impact of that kind of health care.
The things I will talk about this morning have to do a little bit, or this afternoon, have a little bit to do with the problems, the kinds of complexities the system shows and the kind of services that families are actually providing for their own children.
It is clearly very important how we describe any population of people and for this study we used a definition of children with special needs. We wanted to capture kids who were receiving services through public and private plans, kids who had mild kinds of needs as well as more complex kinds of needs and we wanted to capture information about a lot of kinds of issues but that is the definition that we used.
We had 2,220 responses to this survey. It was about a 41 percent return rate. It was a mailed questionnaire of a long list, a quite complex questionnaire.
Just to give you an idea of the kinds of health conditions, we asked families a number of issues. This was something the university wanted to do. The families who were involved in the study did not want to ask families what kind of disability their child had because families do not like to necessarily describe their child in the viewpoint of whether they have this disability or the other.
What we found by asking them a question about what kind of disability they had, most of these families said their child had three, four, five, six, seven kinds of special needs or conditions. The conditions were not exclusive. They were overlapping to some extent, but more importantly, many children who have or many adults who have one issue with functioning or impairment, have another one as well. It is not at all uncommon I would say.
Just to give you another little context of who these families are, these are families who are very well connected to their systems. Most of them had health insurance. A lot of them, over a third of them had a secondary kind of health insurance. They were also receiving lots of other kinds of services. They were receiving many of them special education services in school. Many of them were receiving if they were eligible in terms of aid or early intervention service systems. Around 70 to 75 percent of those two categories.
Almost half of them were getting Title V, children with special health care needs services, a little over a third were on SSI and then in the 20 percent range, 25 percent were getting either state department of mental health or retardation or developmental services and then a smaller percentage were getting services from the Department of Mental Health. But basically these were kids well connected to the system. There are a number of other kids with special needs who are not perhaps as well connected.
What I thought might be interesting to you in thinking about this ICIDH system is how families perceive the children. Now, these are children in this survey who were receiving a lot, a utilization question. There were getting a lot of services. Over 20 percent of them were going to the primary care provider or the specialty provider more than eight times in a year. Almost half of them had been in the emergency room in the past year and 40 percent had been in a hospital, hd a hospitalization.
On the other hand, when you asked the family how they would weight their childµs overall health at the present time, as you will see, many of them weighted their childµs health as very good, good or excellent. Only less than 20 percent rated the childµs health as fair or poor.
The reason I wanted to mention that is because I think that one thing I was thinking about when I was listening to the ICIDH discussion this morning, I was thinking, who is it that is going to be deciding what the answer to a bigger question is because different people perceive the same question from very different perspectives. These children who their families were saying are quite healthy, on a piece of paper in a doctorµs office look enormously complex. These are definitely kids with a lot of needs and getting a lot of services with a lot of conditions.
So I am just cautioning you to think about, now, who is it that is putting down the information and how is that information being collected.
The other thing about this question that we asked is we could say maybe we have a great system here in the United States and in fact, kids with very complex needs are enormously healthy but if you see their answers to the next few questions you realize that in fact it is more, I think, probably a family perception of their childrenµs health.
Here is overall how you would rank the level of your childµs disability or special health condition and here the vast majority of people fell in the seven to ten category or the six to ten category. So the same kids who are, families are saying they are relatively healthy, they are also saying they are quite significantly in terms of disability and this one we asked what best describes your childµs special health care needs? Are they changing all the time? Are they stable or are they somewhat stable? Only 35 percent of those families said the childµs health condition was actually stable which certainly coincides with the fact that they do need a lot of services.
There were 20 percent of this population or almost 20 percent was technology dependent. We here we have how many days of school they missed, again, another possible measure of how many services they need and what their general status of health is. They were clearly missing a fair amount of school compared to the regular population.
Well, we were trying to design a questionnaire that collected information on a lot of kinds of issues for kids. I think one of the things that is important about what we found out is that here are a number of kinds of services in the system that children are really not getting at the level that at least the family thinks they need and so when I was hearing this morning about ways of measuring outcomes and whether the system would help us identify what really works for a given person who has a given need, families, I think, are definitely saying, at least in this study, that they wish they could get, I am sorry this is not a very good cover, families are saying they wish they could get more services, whether those services in another kind of measurement outcome would be the best services for their family. I donµt know, but I am just saying that somehow the way the perception is in the system, families feel quite stressed about the fact they canµt get - they are either denied by their insurance or the complexity of getting it between the school system and the number of providers they have, so here is an example of a comment.
Our plan only partially covers pediatric physician and speech therapies. There are no such therapists in the network because it is too specialized of a field so we will never be completely covered. The plan doesnµt offer pediatric special services.
Or here is another family talking about a particular condition their child has. My previous health plan refused to pay one cent toward diagnostic testing for my son. He was red flagged. I couldnµt even get a hearing test for him. When his previous pediatrician asked for testing for possible autism, I was told autism was not covered. So when I looked at the system and thinking about how does a person functioning in daily life and whether we recall the diagnosis, however do we allow families and children and people to get what they need in the system, any kind of system we have that would better measure what is happening and give us some better data on outcomes I think would be very useful.
Another thing we asked in this survey which is not asked in very many places I think is a lot about the kinds of services that families are providing to their children at home. This is an area where I think, I donµt know how this would be measured from this system. I clearly think that it is not being measured at all right now as far as I know. I think some of our providers anecdotally have an idea of what is happening but there is not any system for measuring the kind of care we are asking people to do, families to do for their children at home.
So this question was do you provide health care at home such as OT/PT therapy, care of breathing equipment, et cetera, for your child and if so how much time do you spend each week? Almost 20 percent of these families are spending 20 or more hours a week which is a lot of time taking care of their child at home.
The next question we asked on that, here is an example of what a parent would say that they were doing to their child. I do everything from morning to night for my son. I do a g-tube, take him to school, doctorsµ appointments, horseback riding, swimming, bathing, feeding in his g-tube all night long. I also have three other children. It is a 24-hour a day job. I average three to four hours of sleep a night.
What I wanted to talk to you here is the idea of a child being in the context of a family and how this system might measure the kinds of things that are stresses on the family as a whole and not just how that given child is functioning but how the whole family is functioning.
Clearly I think when we collect any information about families, we have to think about why we are collecting the information, what purpose is it going to be put for use in, how will it be collected and how will it be used. How will families understand the purpose of collecting the information and how reliable would the information be.
As I say, children are in the context of their family and if the goal is go improve the services, the family needs to know what the goal is and the family needs to take a role in getting the best information into the record in terms of what is really happening to that family. I was a little concerned when I thought about the idea and I hadnµt really thought about it until I was here this morning of how the information would be collected and as I understood one of the pieces we were discussing this morning was that it might be a provider either asking a direct question or making a judgment based on the information they were collecting at an encounter.
I would just caution you a little bit about that. I think a doctor or a provider often only sees the family and the child in the context of the moment. They see them in the context of whatever the kind of service they are providing is but it is very complicated to see the family in the context of the whole family experience.
The second thing is the families donµt necessarily know why a provider or doctor is asking them a question but they certainly think about why and what I think the cautions to take are they often want to please whoever the person is who is asking them the question. They sometimes feel judged by what the person is asking them and so you have to be very careful I think about the mood in which you collect the information and the amount of information that the person has as to why you are collecting that information. It raises the question of whether the families then have the opportunity to read the record and know what you have said and perhaps discuss it or think about another point that might need to be made or something like that.
I think families are only going to be willing to share if we are talking about asking a direct question and getting an answer if they have an understanding of why it would be asked and what the context would be. As I said, they probably want to see what you have said, what the answer is, what you think, what you think your rate is in the situation.
The families in the survey showed very strongly, and this was raised in a couple of presentations this morning about the need for better communication. There wasnµt any question in the minds of these families that the complexity of the system in the United States is such that we tend to be treated by lots of different people in lots of different places and it is very hard for information to get from one place to another, comparable information or agreed upon information.
So I think families would feel very strongly about whether this information could improve services for this child or for all children and improve the communication system between parties providing services.
Let me talk a little bit now about, here is another comment on family context. We asked questions about whether there were Ruth Steinµs questions or a little bit adapted from an earlier versions of Ruth Steinµs questions on impact on the family providing a chid with special needs. In this poulation, people who responded to this question, there are 60 percent of these mothers had reported an impact on their paid employment. They had either cut down or quit work in order to take care of their child and 66 percent of their families had reported an impact on their family finances.
Now, again, if we are thinking about the ICIDH bearing a contest of functional assessment, how is the system, a person functioning within the system. I think you will have to think of with families, we are talking about the family function, not just necessarily the kidsµ function. So if the family, if the mother in fact is having to cut down or stop working in order to care for the child and if it is having a huge impact on the finances, it is an important piece of information. I donµt know exactly how it would be collected bu1t I think it is important.
I wanted to show you a few more things that families are saying from this survey that they need help with.
I could use more support and information from them to manage - in this case we are talking about the health insurance companies - to manage my childµs case. There is a lot of waste they are unaware of and never ask about.
The poignancy of this family, if any family who is using so many services and wanting so hard for the system to work for their child and for other children, and the lack of involvement that families have in this system so that they canµt really participate or they are not asked in ways that would be giving information back.
Here is another family. No one has ever told me about what is available really. Other parents telling me is where I get 99.9 percent of my information. My child was not having PSDT, nursing care and handicapped placard, diapers paid for if it were not for other parents telling me. Parents and actually all people who have special needs and I think we have known for many years in many different kinds of support groups need to be connected to other people who have similar kinds of experiences.
All services my son does get are under different programs. No one ever sees all. I guess I do. I guess I am the case manager. We asked a lot of questions about how your system cleared meets care and again, if the ICIDH has any way of helping get a broader picture of a given personµs kind of experience with the system, there is no question that the system is so complex and there is so very few ways that information gets exchanged back and forth.
Why does it have to be so difficult? I get so frustrated trying to explain why my son eats what he does. They act like I am making up the multiple problems he has. That is again a family talking about an insurance company.
But it is not just the insurance companies. It is all kinds of parts of the system are complicated.
So, in closing I would just like to say I think this would be an enormously empowering piece of information if we could be looking at people who have special needs in a context of all the kinds of things that can do rather than just labels with what they cannot do.
But I think there are some cautions when we are thinking about it from the point of view of families. One is I think the families need to be part of the decisions of what gets written down themselves. I think you have to think about families in context. I think you have to think about how families kind of understand what it is we re asking of them or what it is we are recording about them so that we can be completely honest and fair in what we are saying.
I certainly have great respect for all the people who have put so much work into this so far. It is obviously a piece, I think, with tremendous potential. It seems quite incredible to think about actually tracking information around the world when I see how complex it is to track information right here in the United States and how little information we actually have about the population of kids that I have some experience with. It does seem a little mind boggling to believe we might be able to do this on the world level but I certainly think it is quite an amazing undertaking and I would just say that I think the devil is in the details.
I think the actual specifics of how the question is asked, what question is asked, what we do with it is going to be the empowering piece of it. I am happy to answer any questions. Thank you.
DR. IEZZONI: Thank you, Ms. Wells, that was really a wonderful presentation. Let me just ask Jayne Lux or Paul or Gerry whether you have any answers for her about whether there are any codes in ICIDH that toss anything about the family environment.
DR. PLACEK: As I was looking at the vignettes, I was trying to immediately come up with codes for them because there are aspects of the vignettes that are codable, that is, social supports, family supports, barriers, institutional barriers, those are all things we coded in the WHO vignettes.
DR. IEZZONI: Is there anything for a mother losing her job?
DR. PLACEK: No. Not that specific, no.
DR. IEZZONI: Jayne Lux, do you have a comment? Okay. She has got the red book.
MS. LUX: You would think after all this time I would have this memorized. I am giving away the ghost here that I do not. What we talked about these issues very much, especially in the participation dimension and I am looking now at participation in social relationships, in particular participation in family relationships and there we detail parent-child, child-parent, sibling, so this was the beginning attempts at least at issues of participation within a family environment. We also looked in chapter five, this was a new addition to the classification, new as compared to data one and that was participation in home life and assistance to others so that we could, the intent was to look at issues of, say, an individual with a health condition being able to provide assistance to others in the way that they did before and that might mean care of children, whatever.
Your issues of how we impact on the childµs relationship within the family is probably in this current version best captured really in the parent child and sibling relationships as far as my glance at it goes at the moment but I have made a note about that and I think it is a point well taken.
DR. PLACEK: I have had a minute to catch up on my codes, too. In the environment information, chapter three, is support and relationships, E310 is immediate family. E315 is extended family, E320 is friends, E335 is people in subordinate positions, E330 is positions of authority. And then so for various supports or barriers as supports they are plus one, two, three, four or barriers they are minus one, minus two, minus three, minus four. E330 minus four would be a major barrier from a physician, a person in position of authority. So that is how I was kind of thinking of some of her vignette.
I think part of that, but they were not intended as vignettes, they were intended as illustrations but they are case illustrations which we coded as among the 25 vignettes in WHO. We will have to take a look at those WHO vignettes and I think you will find them similar to some of the things you were putting up in your study.
DR. NEWACHECK: Paul, I think part of the issue, though, is anything Noraµs point in part is that the impact of disability in this case goes beyond the individual and ICIDH is really focused on the individual and in fact for children it extends to the whole family and probably for adults, too, certainly, but more in the case of children typically because they are dependent on their families. We are not really capturing any of that in this tool. Now, it wasnµt necessarily intended to do that but we are leaving out a major aspect of childhood disability by not trying to capture that in this tool and that is really I think a limitation. Maybe it wasnµt intended to do that but I think it is a limitation for children.
DR. IEZZONI: You have started a conversation. I am going to resist asking some other questions and because we have to hear from Bob Griss next and a couple of other speakers, but I hope you can stick around, Nora.
MR. GRISS: My name is Bob Griss. I am the director of the Center on Disability and Health here in Washington, D.C., and a co-chair of the Consortium for Citizens with Disabilities Health Task Force which does a lot of policy analysis or at least governmental relations to the Hill on various bills that go through Congress.
I will be talking about probably more my ignorance of a lot of the esoteria around ICIDH. When I learned how to pronounce that in one breath I thought I was achieving something and it does distinguish me from a lot of other people but it does not give me a lot of authority in critiquing the methodology. In fact, one of the things I have learned this morning is that ICIDH-2 is really a language and it is a language that attempts to capture very historically specific information and we just saw an illustration of that with Noraµs presentation and an attempt to capture that data in the existing codes.
And then I heard earlier today efforts to test the, at least the coding, the utility of the coding for vignettes or for different individual cases and I guess this has been going on for a few years and it may go on for more years. I heard earlier today that nobody is expecting this conceptual framework to be incorporated any time soon in health policy.
And so I want to spend my time really focusing on the potential use of this type of tool in the health care environment and suggest that it may be more useful to work out the details of applying a conceptual framework in language like this to some specific functions in the health care system and then with that momentum discover it has many other uses, too, because I think the value of this tool seems to be that it has so many potential uses that we never get to actually developing its use and I am watching the health care system go to hell with growing commodification of services that become available to you only if you can afford them and I am watching the various payers, the public payers and the private payers try to figure out how to limit their liability and just today, HCFA has asked for, today was the deadline for comments to be submitted on Medicare coverage criteria. What criteria should HCFA use in deciding whether Medicare will cover certain benefits.
Now, benefits are clearly specified in the statute but they want the right to say that certain benefits should not be paid for for certain subgroups within the Medicare population if there is not scientific evidence that it has a medical benefit. Now, what kind of scientific evidence are they looking for? Well, randomized controlled trials would be nice. And one could, they do also mention a couple of functional status measures. They said QALYs would be good and DALYs would be good, the Quality adjusted life years and maybe SF-36 might be nice. And that is about it in terms of functional status measures.
The idea of capturing in an administrative record changes in function at the participation level or at the activity level was really not addressed and these are regulations that HCFA is in the process of formalizing that will ultimately affect the coverage criteria for an entitlement to health care.
I think there are some very strategic issues that are being discussed in our health care system that should be the focus of testing. In other words, not how does coding work for this new vocabulary but how do you address the specific functions of coverage criteria, of assessment of patientsµ needs as we saw an interesting demonstration with the physical therapy, with payment levels how do you justify higher payment levels because some of the patients you see actually have functional status measures that indicate they may need more than somebody else. How do you use these measures, these functional status measures for quality measurement so that we really know whether we are getting the best interventions.
We are paying for the interventions which have the most important functional consequences from the consumerµs point of view and yet the policy implications for that are very tremendous for reshaping the health care system. A lot of the problems that Nora has just addressed, parents want more things that work, well, the providers, the payers want to know what really does work and we are not capturing that information so we are not able to show it to justify medical necessity decisions or decisions even on coverage criteria.
And, by the way, when they decide that you are not eligible for the coverage, this is not an appealable issue. This is not something you would take to the administrative law judge and they say yes, in your situation we will give it to you because we think it works.
If national coverage criteria excludes certain populations from a particular service, that is it. They donµt get a chance to prove that it has an impact on participation levels.
So I donµt quite understand why we are spending a lot of time on coding issues when there are policy issues that have to do with strategies for using information and using information that we donµt have effectively captured on functional status and changes in functional status.
At the present time when Health Care Financing Administration is concerned about cost containment, they use their power which is derived from the statutory words reasonable and necessary that allows them to create out of whole cloth very arbitrary definitions of particular services like durable medical equipment and so they can say that durable medical equipment has to be something that is used in the home or it has to be something that is only of use to persons who donµt have certain disabilities or they can say that augmentative communication devices is an example of a type of prosthetic device which HCFA has continuously said is just a convenience item because speech is not a covered benefit.
I mean, clearly they pay for speech services and yet what would it take for a person without certain anatomical features to benefit from speech services? It doesnµt depend on the speech-language pathologist as much as it depends on the use of certain technology which with the training of the speech pathologist can enable a person to speak and to communicate.
Those are the kinds of functions that are not being captured in the decisions that are made about coverage and about measuring effectiveness and so I think there is a need for a tool that captures in meaningful ways functional status and frankly I am hopeful that the ICIDH-2 will provide those elements but we need to not sell it as a classification scheme but as a practical tool for measuring changes.
The last point I want to make is that the issue of equality is a very important one. I am thinking here of the ADA, Americans with Disabilities Act because it gives us an opportunity to put health care decision making into a civil rights context and if we thought of looking at equality of outcomes, not just equality of inputs which is the way we are typically looking at discrimination, do we have the same inputs available to everybody as opposed to are we providing sufficient reasonable accommodations so that the covered services are actually beneficial to all people, that everyone has an equal opportunity to benefit from the covered services. If that becomes the question, then we need to be able to demonstrate what the outcomes are and a lot of people without disabilities can get services that enable them to do various things in the participation realm and frankly, unless we have a tool that measures function for the total population, we will not be able to make the ADA argument that additional services or alternative services may be necessary for people with disabilities to benefit from the covered services.
I think the concept of functional equivalent is a very powerful tool here where one would be able to say that certain benefits are clearly available to people without disabilities or people with some other disabilities. For people with a particular disability or functional status, it may be necessary to provide other additional services in order to get the equality of outcome and I think that we need a health care system that is flexible in that way and that can provide equality in that way.
That is all I really wanted to say. I think there are a lot of issues here that need to be applied to the policy world that is zipping along in the public sector and the private sector. I am pleased to see that sometimes practitioners grab hold of some of these concepts and run with them in the limited ways that they are using them for, mostly in the claims process but I think if the goal is to redesign a health care system and create incentives for rewards to improvements in health status, then we need to measure changes in health status and we shouldnµt be limiting it to the medical model and changes at the body system level but should clearly be going to the activity level and frankly to the participation level. I was very impressed with Gloriaµs participation of how those participation levels may be much more amenable to change than some of the body levels.
The problem is that the payers are in the business and I use the word business advisedly, they are in the business of limiting liability, limiting their costs so the fact that some service may be cost effective to provide but doesnµt meet their arbitrary definition of durable medical equipment doesnµt interest them in providing it because they donµt get rewards for improving peoplesµ functioning and yet that is what health is all about and that is what we need health care policy to do.
HCFA put in its proposed regs that if something works but it doesnµt fit within the definition of the Medicare benefit, we donµt want to pay for it but if something does fit within the Medicare definition, even though it costs more than some other service that doesnµt fit, we would rather pay more for the thing that doesnµt work as well as long as it is strictly within the Medicare benefit definition. That is absurd in my mind and if putting it out as criteria that they would like your comments on so that they can make intelligent decisions about coverage policy.
Thank you.
DR. IEZZONI: Bob, I knew you would be great. I am so glad you were able to come. Thank you. That was really great. Any questions of clarification right now? We will ask Bob to stay around for the panel questions. Sit tight. Who is next? Dr. Crews
DR. CREWS: Well, I have been sitting over there worrying about my role as the penultimate speaker. I am trying to say some things that will carry us through. Lisa, I am reminded that the role of the chair is to preserve the sole rights of the last speaker so I will try to stay within this 20 minutes or so.
I have been, I feel like an oldtimer here, I have been working with the ICIDH since 1984. That was when I was introduced to it so I have experienced a number of the frustrations that people had in applying that conceptual model to service delivery but today I want to talk about three or four broad topics: aging and vision impairment and within that topic talk about clinical services, measuring outcomes, research and policy and again, just asserting that the ICIDH is a classification system and I think of the classification system, it serves both to sort out the domains of human experience, that is, the body function, activity, participation and environment and to integrate those experiences as well as it is the power in that integrative role that I think that gives strength to ICIDH.
As a conceptual framework, the ICIDH shows relationships of human experience and this afternoon we talked about how activity limitations may lead participation restriction or participation may be restricted by the environment.
Some utility I think of the ICIDH-2 is at its broad conceptual level it can be fairly easily understood by multiple users in the public. The difficulty is in the coding. I think the ICIDH-2 is relevant to the lives of people with disabilities. I think it is interesting that here in this new millennium that we have discovered the environment. If you talk to people with disabilities, they knew long ago that the environment was a limiting factor.
We know that removing environmental barriers, both physical and attitudinal are essential to participation and that was really what brought the ADA about and people with disabilities and this kind of reflects what Gloriajean said, our little insight, our little epiphany for the day, is that I think people with disabilities as all of us are more ultimately concerned about full participation and all those measures of work, relationships, our ability to participate as citizens, then we are with specific activity limitations because we have the wherewithal to get around a number of those activity limitations.
A lot of existing research as we have noted today captures elements of the ICIDH-2 if we look at clinical measures and the ICIDH as well provides a framework and a language that allows for communication across disciplines. One of the things that has pleased me today is to see how multiple disciplines are engaging ICIDH and talking more broadly across their own disciplines.
I think finally the ICIDH creates a method to link broad public policy with disability policy and the question that I would ask, for example, is how does a vital accessible public transportation system lead to greater opportunities for employment. Let me tell a little story since I tend to tell stories a lot.
I work for the Michigan Commission for the Blind for about 20 years and a couple of times a year we would do public hearings from our consumers. They would tell us routinely that they could get jobs, that that wasnµt the issue, that they could not get to their jobs. So they had the skills to get a job, a job existed, they could market themselves to get that job. We, I was senior management of the Commission for the Blind and we would all kind of fold our arms back very sanctimoniously, and say well, you know, we donµt do anything in transportation so that is your problem. It is not our problem.
So I think when we begin to look at public policy, we can begin to recognize that these two things are related. The environment is, in fact, related to participation measures and that people who are only working in one domain like improving activity simply are not doing their job when they will not advocate for consumers in a broader environment.
I want to talk a little bit about using the ICIDH framework as an epidemiological tool or epidemiological framework to talk about aging and vision impairment and we can talk about some of the underlying reasons for that to begin with.
Disease, as all of us know, is a fairly lousy predictor of function or outcome so a diagnosis, for example, of macular degeneration really doesnµt tell you a whole lot. It tells you something and that is good information. I am not going to dismiss that but it doesnµt tell you a whole lot.
Body function domain, seeing, gets at things like acuity and feel and that is more useful knowledge in another domain, for example, for rehabilitation. Activity limitations that may be associated with low vision, include activities such as reading books, newspapers and bills, driving, walking, walking up steps, street crossings, and identifying medicines. I donµt know if, well, I will address that in a second.
Participation measures or participation restriction may be things like getting together with friends, relatives, valued activities in the community, shopping, going to church or synagogue. We donµt know what the predictive relationships are though between activity limitations and participation are. Environmentally influences that might affect somebody who is older and visually impaired include things like large print. Time Magazine, for example, has just come out with a large print edition. It is on the newsstand so they are addressing that issue. Signage and labels is an environmental issue. Public transportation is an environmental issue. And the weather is an environmental issue.
A colleague of mine did a study a few years ago with older people who are visually impaired and found out that the chief predictor of an older, visually impaired person traveling was the presence or absence of sidewalks in the community. And at the time we didnµt have the revision of the ICIDH to talk about that as an environmental issue. We saw that as a separate issue.
I want to share a little data with you from the 1994 supplement on aging. You can see how the SOA-2, both deals with disease and body function. If we go to that large data set there are a about 880,000 people who are blind in one eye, about 340,000 people who are blind in both eyes, about 2.8 million people who have any other trouble seeing and about 3.6 million people who have vision impairment, broadly defined.
That document also gives us some diagnostic information in terms of the number of people who have glaucoma and cataracts. What are the circumstances of those 3.6 million people who have vision impairment? If we look at comorbidity, then in this table, this is from the 1994 supplement on aging, and one column shows people without vision impairment and the other shows people with vision impairment. So you will see, for example, that people with vision impairment are about twice as likely to have diabetes, about three times as likely to have a stroke. They have higher rates of heart disease, hypertension and arthritis. They are twice as likely to have fallen in the past 12 months but they are not breaking their hip as often. There is a protective factor in there.
They are twice as likely to report difficulty walking, twice as likely to report difficulty getting out of bed, almost three times as likely to report difficulty preparing meals, three times as likely to report difficulty getting outside, three times as likely to report difficulty shopping for groceries.
So in terms of other health conditions, people with vision impairment are, there is a discrepancy. They have other health conditions of higher rate. In terms of activity limitations, they have a harder time doing things and I would expect that. If you look at the difficulty managing medication, people with vision impairment are five times more likely to have difficulty managing medication. Well, the standards, the national standard for over-the-counter pharmaceuticals for the instructions is six point print. That is little bitty print so no wonder they have difficulty managing medications because they canµt see the directions. They canµt see the contraindications. So that is fairly obvious but then if you look at the last three measures on that table, getting together with friends or relatives, getting together with friends and neighbors, getting together with relatives and going out to a restaurant to eat, there is not a whole lot of difference. Those are all participation measures.
So the question is, if these people are all so held up, how come they are getting out so well? There is two things that come to mind. One is the way the question was framed. The question is, in the last two weeks have you gotten together with friends or relatives. So if you get a yes response, you are in that yes category and if I were only out with friends and relatives once in two weeks, I think I would feel fairly severely socially isolated so that is a limitation.
So the other thing that we donµt know is what kind of strategies do people employ in order to have those valued activities? And people are smart. People are resilient. They do have alternative ways of doing things. So if things like getting together with relatives and friends and so forth, are important, people define those strategies.
So if we only look at comorbidity, activity limitation, that would be a poor picture of this group of people. It also suggests to me it would be very easy to say they are doing all right so why should we do anything for them. Well, we need to ask some of those underlying questions.
ICIDH-2 can also be used in terms of outcomes research and I want to just share very quickly a project that I began in 1992, prior to revision of the ICIDH.
I did some research with the VA from 1992 to 1995 that looked at an effort to measure relocation outcomes among older, visually impaired veterans. This was driven by Congress. Congress wanted to know if they were doing a good job funding these programs. What we tried to do was to apply the old, not the new, ICIDH framework to that evaluation concept.
So we captured information about diseases and comorbidities as you would expect. We captured information at the body level, for example, reading print, life perception and so forth and we captured a number of items that dealt with activity limitations. We used three scales. We did not try to employ the ICIDH scale. But some of the activities were things like writing a check, preparing a meal, doing dishes, crossing the street and so forth.
In the old IPIDH, it was really hard, there was no concept of participation as a measure or the environment as a measure and we tried fairly awkwardly to measure those issues in that document so we asked, how much time do you spent with others or do you live near public transportation so we didnµt have the elegance of the new ICIDH to do that. If I were to do that research again, I think we could, in fact, capture data within each of the domains of the ICIDH. We could measure and quantify outcomes within each of those domains and one can develop both pre- and post- measures or interval level data or data at various intervals that would allow us to characterize the trajectory of change. How rapid is it or where do losses occur.
As I mentioned earlier, I think the most important outcome is in terms of participation measures.
So, in conclusion the value of the ICIDH-2 is that it can portray the complex dimensions of human experience. It is a framework that is essentially easy to understand. The model allows for a common language across disciplines. It shows relationship among the experience of disability, interventions and public policy and ICIDH-2 can be successfully employed as a framework for outcomes research and it can be used both prospectively in a research design or retrospectively as an analytical framework.
Thank you very much.
DR. IEZZONI: Thank you. That was very well articulated. Let me see whether there are people with questions of clarification. Since it was so clear. Great. Stick around. Ray, you are the last one up.
DR. SELTSER: Well, I have been again concerned with my role as the ultimate speaker in the afternoon and since it is getting late, I probalby ought to make sure I get a few of the points I want to make to you in early. Let me first say that I prepared a number of specific points to present to you today and I have probably thrown most of them out in my thinking about what needs to be said at this stage of the game. There have been some excellent presentations. I was very impressed with Dr. Walkerµs presentation which in fact proved to me what the potential usefulness in the real world of the ICIDH is. We just had an excellent summary of what the value of the ICIDH-2 can be in epidemiologic investigations, et cetera.
Let me start by saying that I have been a confirmed, born-again ICIDH-er since 1990 when I was first introduced to the ICIDH, the old ICIDH. I followed with great interest and over the past 10 years the evolution of the new ICIDH-2 probably one of the most significant acknowledgments that I have on my 50 years in the professional arena is being listed as a contributor to the ICIDH-2 in the back of the ICIDH-2 beta two document. I was very pleased by this because I think if I was going to go back over my career and wanted to be identified with any single activity that is ongoing today, it wouldnµt be, for example, to be the one who eliminated smallpox as my precedessor at Hopkins, D.A. Henderson did, but it would be to have thought about introducing the conceptual framework of ICIDH into the literature and into practice.
Unfortunately, it is not in practice yet. The question is what should we be doing? I believe that this is probably, and again since I am retired, I donµt have any impact anymore but if I were going to be utilizing or reactivating some of my former positions in academia and the government in relationship to this new ICIDH-2. I would number one be emphasizing that the journey of 1,000 miles begins with a single step. And what you are asking us to consider in terms of the incorporation of a functional assessment element into the encounter forms, administrative records, is to me the first step of a journey of 1,000 miles.
I do believe that the ICIDH-2 is a remarkable document. I must congratulate WHO and what it has come up with because ICIDH-2 to me is the first and the only document that I have ever seen which really defines health. If I were back in my position as the dean of the School of Public Health and had control over the curriculum and was involved in the interdepartmental, interschool activities, the first thing I would do at this point in time is to develop a course, a required course in all of the health professional schools which redefines the concept of health in ICIDH terms.
I donµt think that the health, the so-called health care delivery system needs reshaping. It needs reengineering and I have had a lot of time to think about this over the past two years since I have been retired and I thought that you ought to know what I think about this. The fact is that if something is broken, sometimes you have to reengineer it in order to fix it. What we have now in our system, in our disease model oriented system is a medical care system which is second to none in terms of delivering medical services but a health care non-delivery, non-system.
I remember the movie where the guy said I am mad as hell and I am not going to take it anymore. And in my role as an elderly consumer of the health care delivery system, where each encounter of the health system drives home at my stage of the game the need for some sort of functional assessment to help me get through the problems that I have as an individual. And recognizing that what has happened and the difference between medicine as it is practiced today and medicine as I practiced 50 years ago is that we no longer pay much attention to that element called history. You know, the evaluation of whether or not people should be getting an annual physical exam is indicative of how we think about encounters with the so-called health care delivery system. Nobody has considered the importance, perhaps, of an annual assessment, an annual health functioning assessment. But they think about it is really not useful to do an annual physical. Therefore letµs really cut down on these annual physicals. The fact is that there are very few reasons why you should do an annual physical but there is a very good reason why if we had an adequate functional assessment tool it could be self-administered, it could be computerized, it could be used as a screening instrument to collect data serially on all the people who are paying for so-called health insurance.
We would have or we would begin to develop what amounts to or what we used to have in the old days when everybody was being treated in hospitals as a medical record that you could begin to track people and help them, in fact, make decisions that are important at my stage of the game.
When the decision came as to whether or not I should have my cataract operation, my ophthalmologist could tell me what my visual acuity was but there was no document, there was nothing except the ICIDH which I went back to to try to analyze myself to what extent is my function deteriorating to the point where I am ready for a cataract operation. When I go to my urologist and we talk about my prostate, the functioning element is not very adequately covered because he doesnµt have the time and I go to my own self-assessed questionnaire to determine whether or not I am ready for intervention or whether it is better not to go along with this.
Well, I make these comments because I think that unless we begin to think about the ICIDH, I would like to call it the ICDF or the new ICIDH, unless we think about this as not something that is useful for people with disabilities only but, in fact, people with disabilities as I have said before in other circles, are really a litmus test for the rest of the population and if you do something that is going to serve people with disabilities well, it will probably do well for the rest of the population.
We do need to have a functional assessment tool, a series of functional assessment tools which will provide for everybody an adequate individualized functional assessment similar to that which the Supreme Court in 1990 mandated for children in the famous Zeboli decision where Social Security had to revamp its Social Security determination process because the requirements were for an individualized functional assessment of children who were at that time being evaluated the same way that adults were.
People said we really donµt have good functional assessment tools and we were involved as some of you may know in a Public Health Service task force which was convened at the request of the Social Security Administration in 1991 called Public Health Task Force on Improving Medical Criteria for Disability Determination.
Going back and thinking about why that was really developed, I am convinced that what the Social Security wanted from the Public Health Service was to have the NIH and other groups provide them with the justification for using their listing of impairments as the criteria for making disability determination. It wasnµt working too well at that time.
Let me just read you the recommendations that the task force came out with which really wasnµt what Social Security wanted.
They recommended a strategy for improving the scientific basis of disability determination which moves beyond the traditional medical model focused on disability and impairment to emphasize functionally oriented assessment procedures which concentrate on abilities.
The task force at that time designate four lead agencies of the Public Health Service to promote activities which would accomplish the following. There was to be a coordinated research program on utilization of functional measures in disability determination process.
There was to be a research agenda on improving the precision of measurement of impairments and on the relationship between the level of impairment and functional status.
There was to be an encouragement and facilitation of the education of health professionals on functional capacity and disability determination and there was to be a coordination and standardization of the use of classification schemes for data on persons with disability.
The last was assigned to the CDC and NCHS and that is the only one of those recommendations which has been systematically implemented in the eight intervening years.
Meanwhile, back at the ranch, we are asking the question can we use or do we have adequate functional assessment measures that could be incorporated into these encounter forms which are extremely important instruments. As you know, they are the single most important driving force behind how medical care is provided today.
Unless we have functional assessment visible on an encounter form, we are never going to be able to tie the reimbursement system into a rational approach to providing health care and most importantly assessing health care and assessing it in a way that will allow us to intelligently both evaluate the effectiveness of our treatment and to provide information about the kind of resources we need to provide the kind of care that people really need out there.
This is an age in which we are enamored of technological advances. Lord knows I would be last one to want to revert back to the days when diagnosis and treatment were largely dependent on what you could find out about the patient and how they were functioning. But I think we have gone a little bit too far in forgetting about the importance of how a person functions and trying to determine what are the important elements of a personµs life. What are the elements for that particular person? Individualized assessment for determining what it is we should be spending our limited resources on for that particular individual.
For some people many of the so-called disabilities, many of the functional problems that we have are things that we learn to live with. The older you get, the quicker you learn to better damn well forget about those problems that you have that are not important to you. You prioritize what is important and you try to maximize your abilities to live with what you have an as you grow older, this gets more and more important.
It seems to me that a health care delivery system should be helping people make these decisions. We should be providing them with tools. With all of the Internet capabilities, with all of the sophistication that we have in terms of communication and interaction and focus groups we should be getting people who understand that they should be expecting of the health care system things that improve their functioning, not necessarily things that make the drug companies happier because you are spending more money on a more expensive drug.
I would like to be sure that the few minutes that I have are to encourage you to think about the ICIDH as a work in progress that has something which is ready for prime time in spite of what some of my colleagues say about this. There are many reasons why there may be overlapping elements in the coding system, but if you think about what it would do if we had a uniform classification system that was able to be applied by social workers, by physical therapists, by patients themselves in terms of determining what are the elements of this health thing that we talk about, what should I be able to do? What can I do that I should be able to do and what canµt I do that I should be able to do and let those be the kinds of decisions which are made jointly between the consumer since we are now dealing with a business rather than a service industry, the consumer should have a choice in how his health care dollar is being spent.
Until we begin developing systematically the kind of data which allows society to help make these decisions, we are now in an era where you and I both know that there is rationing of medical care. If you donµt think there is rationing of medical care, you are not in contact with the so-called health care delivery system and the decisions for rationing are not being made on any basis that has any relevance to the consumer but in fact is important to the provider.
The ICIDH-2, which is an enormous improvement over ICIDH, which has the capability obviously of being revised over time, is, I think, not only ready for prime time but the problem is it is, in fact, step number one because what needs to go along with the ICIDH is a series of functional assessment tools which can be crosswalked against ICIDH so that it can be used individually by the clinicians. There are some clinicians who only need to know one area of the ICIDH coding system. They need to know about their particular impairment codes and that is all they need to know.
But primary care providers should be experienced. They should have as their Bible the elements of the ICIDH-2 and I would say until we have people investing money in terms of educating people, in terms of how do you gather data on functional assessment, until we begin to thinking about providing new kinds of health professionals who can do the kinds of things, we shouldnµt be wasting the time of physicians out there doing, we are not going to have the kind of system which can reintroduce the one thing I think is absolutely lacking in our health care delivery system today and that is the element of compassion. Does the term compassion have any role to play in ICIDH discussion?
Well, if you think about what compassion is, compassion is a sympathetic consciousness of othersµ distress, together with a desire to alleviate. You have heard a lot about compassionate conservatism. I would ask about compassionate health care. The extent to which one can identify and assess the distress of an individual depends on the kind of data we collect about those individuals and if we continue to define the functioning of elderly people in terms of ADLs and IADLs which I consider a tremendous insult, ADL and IADL are fine tools for assessing some of the needs you have in a nursing home to providing nursing aids but to use the ADL and IADL as this is all you ought to be able to do as an older person, those are the kinds of functional assessment tools that are being incorporated in surveys.
We have to reassess our role in terms of the responsibility. Let the public know what we are doing and what we are not doing. Let ICIDH-2 is to me the breakthrough document that could allow us to get back on track in terms of truth in labeling, in terms of getting back on track in terms of getting some of our agencies to put money into pushing the functional assessment area into something that should be much better organized than it is today.
Thank you very much.
DR. IEZZONI: I feel like we ought to break out in applause. I donµt think anybody, knowing we were having a meeting on coding classification and functional status would have imagined that we would have such inspirational speakers. I want to thank all of our panel and others who have spoken to us because it truly has been great. Thanks, Dr. Seltser for the benefit of your 50 years. I canµt imagine that everything is falling apart for you. You look great, but people often say that to me, too, so understand exactly what that feels like.
Are there any clarifying questions for Dr. Seltser before we, we are supposed to end the panel at 4:00 but I would like to extend it just a few more minutes. Any clarifying questions?
Can I lead with a question that I think goes to something that Nora was talking about, this notion of I am going to use a word that you didnµt use, labeling. If you have a caregiver, not a family caregiver, a clinician assigning a code to a patient. It could be labeling then in the way that for so many years people were labeled in a way that prevented their full participating or skewed their participation.
I was wondering if some of the clinicians in the room, since I see an umber of you are still left, could maybe come to the table. I personally feel this quite acutely and I would love to hear what your thoughts are. Maybe Dr. Wallace, as a caregiver, or clinician, you could come to the table as well.
MS. HAWLEY: In Minnesota, that was really a foundational question for us because we think it is very important for or we think there is a lot of bias if a clinician does the rating and so we have structured our form to be a self-report form and then we talked about the pediatric population and the inability to do that. It would be the family who would fill out the form and perception is reality, too, that is the other thing about a self-report form is what they can do and what they do do at the activity level is also, was also an important part of our deciding to do a self-report form.
If they decide, I mean, we may see them do something but if they decide they canµt do that in their role in society then they are not doing it. So we want a self-perception, I mean, we wanted self-report, we thought that was important.
DR. RUGGIERI: Just in case, my name is Alex Ruggieri, I am a physician. I am a rheumatologist and obviously have a strong interest in the functional status domain. To address Dr. Iezzoniµs question about, to make sure I have got it right, who should be reporting. I think one of the things we learned today, and I donµt want to give away my talk tomorrow, but one of the things we have learned today is there are numerous use cases in the functional status domain and what we are trying to decide on is whether ICIDH-2 will adequately serve all those use cases. I think that is a core issue.
Regarding the issue of who should classify, there are really use cases for classification rules for everyone and in the rheumatologic domain, since the early 1990s, and let me quote a couple of names of two individuals who I think published a landmark work, Frederick Wolf and Ted Pinkus. Frederick Wolf is at the University of Kansas and Ted Pinkus at Vanderbilt, showed the importance of patient self-report data on predicting outcomes and the traditional physiological measures that we had been using for a long time really were not as good in predicting who is going to need what therapeutic service.
But I think what we have to decide is, and I think what we have heard this afternoon was a litany of really important use cases and we have to decide whether ICIDH will serve that but patient self reporting is one of those use cases and will ICIDH capture the conceptual needs or intent of the patient reporting important information.
DR. WALLACE: A couple of points and I am going to refer to the RAINBO so I am going to put this in perspective. The reason is, I am a speech pathologist and I going to let Dr. Threats because he is sitting up here, he may want to talk about it. The American Speech and Hearing Association has a functional outcomes measure, the ASHA THAX(?) and I use that as well. I want to talk about the RAINBO because the ASHA THAX, while it is an instrument that is very good and I like it, it looks at communication and I am at the point now I am so involved with the participation kinds of issues relating to the World Health Organization until I donµt want to just look at your mouth unless I am at the B or the A level. I want to, at the P level, look at the broader picture.
What we do in terms of the RAINBO when we get to the activities and participation level, we have the three, actual three different levels. There is level one, two and three and level one deals with more basic kinds of things that everybody has to be able to do or should be able to do if possible like transfer, toileting, just basic kinds of skills that everyone does.
As move to level two, we get into grooming and other kinds of things that everybody does but in different ways. And then when we get to level three we get into other things like recreation, employment, things where there is a lot more latitude and where there is a lot more individualization needed and so it is very important from our perspective to have people do the separating themselves because especially when you get to the level three, we need people to tell us which categories are important. We cannot dictate what things are important to an individual person, especially level three, recreation, do you play basketball, what kinds of things are important. That is up to the person so what we do is we have the person, if possible, and caregiver if needed, rate themselves using user-friendly kinds of support materials and then after the person has rated themselves, we go back in and for selected kinds of tasks, we try and figure out, you have rated yourself in this way. Now letµs see from our professional perspective if we can figure out how to improve that so we can kind of tease out, we are going to watch you in a particular setting. We canµt watch it in all settings but we try to pick representative ones so we can actually observe the person to see are there more PT related kinds of things that are causing your rating to be lower or more speech or a combination and that way we can best utilize the rehab services because we are more precise at figuring out who is needed at a given point in time in terms of a personµs rehabilitation.
The last thing I want to say is the environmental factors are also very, very important and we canµt go to synagogue or church or all these different places with people. There is a selected number of places and observations that we can make and so caregivers and patients, individuals themselves are very important in terms of giving input in terms of environmental factors.
DR. THREATS: You have hit upon more than one point. One point was about labeling and that is a concern. There are items on the ICIDH-2 such as insight. So to rate somebody low on insight, saying they had severe problems with insight is getting at the very competence of a person and one of the concerns is going to be the control, who gets to make certain ratings. There are lots of ratings on here and maybe everybody shouldnµt be able to make every one. You would hay day somebody who had some Social Security Administration person who, the person they got into it or they werenµt getting along, marked them low on insight just because they found them difficulty and now that becomes a permanent thing that this person has severe impairment of insight. It gets to the very issue again of competence which would follow them. Once it becomes a number, we know that it will follow you forever.
So that is a concern. That is a practical application. It is not a criticism of the scale but it does mean that there has to be some control over who can assign these numbers.
In terms of who should decide, I should say that in the field trials studies that I have conducted and the ones who have used live people, one of the questions for each level for the body function level, activity level and participation level, we have had the people rank who should judge this, one, two, three. Should it be the person with disability, personal proxy, the professional person or I canµt remember the fourth category but in these results a lot of the speech pathologists at least are stating that at the participation level overwhelmingly they are stating that the patient is probably the best to judge that. At the body function level, they are very adept at that because that is what we are trained for but maybe the participation level should be.
I would go on to add, however, that I think that what would be nice would be to routinely collect both. I do need to know what your, we all need to know what our patients think and our patients have a right to know what we think and sometimes we need to have both of this information, you should individually fill it out. You fill it out, I fill out a high CU. Sometimes we think that somebody is unrealistic in what their level of participation but sometimes we are too restrictive in what they might actually be able to do. So you could actually aim at having both do it, be a point of discussion of what we are talking about here. We are talking about people getting what they are paying for. Here I am going to show you the criterion. They are written in common language that I am using to judge and see how well you are doing. What do you think? There is the same thing.
You see what I am working on? I give you what I think, you give me what you think using the same language and that very rarely happens in most encounters, whether it be medicine or the therapies that, because we are losing our jargon and they are just staring at us likely, trying to be polite and then we leave and they talk about us afterwards.
DR. IEZZONI: Thank you. Those have been really thoughtful responses. Jean?
DR. STARK: I am Suzy Stark. I am representing the American Occupational Therapy Association and I just wanted to make a brief, kind of pragmatic approach to your question and that is when somebodyµs functional performance changes. As a clinician for many years I think that people who have had a disability for a long time can pretty easily predict their functional performance at the participation level. It is somebody who has got a new encounter at a new level of disability that they donµt quite live with every day.
I think those are the times that a professional might be a better rater but I think on the other hand form someone who has lived with a disability for a long time, a rater would be the person with a disability.
DR. IEZZONI: They know what they are living with. Dr. Wallace, thank you.
DR. WALLACE: One little anecdotal story that just came to mind. I have a patient who has a disorder, EDS, which is a degenerative, connected tissue kind of a problem and as a result the person at the age of 21 had a stroke. Good comprehension but a lot of difficulty expressing himself and I had him fill out this RAINBO questionnaire and I had him circle all the different activities at one point and then rate himself and that kind of a thing and then I followed up and rated him myself. This was a former swim champ and so for swimming he put four, like he canµt do it anymore and I thought well, you have got hemiplegia but certainly you can swim because I talked to the OT, I know you can swim and he insisted that he couldnµt.
The person had a lot of intestinal kinds of problems and he had a colostomy bag and so he reminded me he can swim but from the participation perspective he canµt. It is a four. So sometimes this input from the person themself is very important.
DR. IEZZONI: Thank you. Those stories really bring home the message. Dr. Seltser, I wanted to ask you, because I know that you have observed letµs say hesitantly the widespread implementation of the ICIDH for many years. That there are barriers to our thinking about using this on the claim. Can you suggest to us as a committee, for our committee, what should we recommend? If you think that ultimately we would like to go towards adding ICIDH codes to the claim, what would be a realistic first step for our committee to be recommending?
DR. SELTSER: The first thing I recommend is that the ICIDH be recognized as something that is no longer existent. There is a new instrument which in fact counteracts the major problem that the United States had in the implementation, using the ICIDH. And that is that you have a handicap. If you read the document, the report of the committee that was sitting at the same time that our committee sat, the Institute of Medicine committee on prevention of disability which came down on the side of recommending its own classification system without really looking at the ICIDH except to indict it on the basis of that you are handicapped and then having Dr. Nagy be the consultant who wrote the appendix on functional classification system.
Now, I would say that the new ICIDH-2 and you probably will hear more of this tomorrow and I am not sure what the new IOM position is on this. I am out of touch with that but the new ICIDH seems to me has adequately taken care of the concerns that were expressed by that committee in 1991, that there should no longer be from a conceptual point of view a concern with holding on to Nagy and forgetting about WHO because I think that there is every reason for the United States now to recognize the importance of being a member of the world community in terms of the ICIDH-2.
The problem with physicians is something that will only, I think, only be counteracted by a requirement that they use the functional codes in order to get reimbursed. Until you have a system which requires physicians to use the same kind of, and make it easy for them. There is certainly the opportunity for you to do things which will not force them to learn more than they have to know about the ICIDH but to introduce function as something that is a requirement even if by the year 2010, a functional assessment code is a requirement for reimbursement.
I do think that trying to push this too rapidly before you are ready for it, before one has, in fact, made peace with the different academicians who are wedded to one particular functional assessment tool and see the ICIDH as a threat. There is no reason why the ICIDH should be a threat to any group. All of these tools can be basically cross-walked with the ICIDH-2. They can still use their functional assessment tools but because the ICIDH itself is not an assessment tool but it is a scheme on which one can develop a spectrum of appropriate functional assessment tools and that is why I think that the ICIDH tool is very useful as a screenign instrument to make sure that you have then directed the individual to the appropriate specialty, to the appropriate type of functional assessment tool.
DR. KRAMER: If I could just follow up on that and others please pipe in as well. I am still back to this issue of implementation, say we would go ahead with it. I have this fear that it is still likely to be perceived and has an extraordinary amount of learning. I mean, somebody said that it did take 24 minutes per case to complete. If you added a 24 minute per case to what it takes for the usual documentation activities, there is so many elements of the health care system that would respond and so my question is how, if one were to go into this gradually and I am not reputing its importance here. You have all given a very compelling argument for its importance and I, as a geriatrician I happen to support that right from the very roots so I donµt disagree with that.
But how would you suggest one would go about with an introduction of something like this that would begin to get it going without necessarily causing such a reaction?
DR. SELTSER: I think you need a marketing strategy. I think, for example, let me give you something that occurred to me here recently. All the publicity about the development of the, completion of the human genome, and there was a lot of talk about that by the scientists at the time indicating we are just at the beginning. What we are going to really need, however, is to develop information about the function of each individual gene because in order to make this something that costs money, I mean, that will reimburse the investors, the pharmaceutical companies are interested in getting, in drug that will change the function of their genes.
So what we are doing is committing ourselves to many years and a billion dollars of expenditure to do individualized functional assessments of each individual gene.
Now, it seems to me that we should be indicating that if we had a system in this country where we were having individualized functional assessments of people, that 10 years from now when we are ready to begin doing studies to determine how does this gene function in society, how does it function in an individual. The drug companies can go after which genes are going to be most marketable. We will have this information in the records because of the functional assessment orientation of our health record system so we use the ICIDH as potentially something that will be economically sound for our industries in this country.
DR. KRAMER: I think that is a good argument. The dilemma is in human genome there has been a number of cases presented that have been very compelling where discovering about human genes has, in fact, translated into some very big impacts.
In function there is some of that information but there has also been a lot of information that when you give physicians information on function and some of those areas, it doesnµt change what they do and so I think what we need to do is we need to give a more limited amount at least and demonstrate its utility. I would agree with you, we have a marketing problem. What I am trying to figure out is what is the more limited amount that we could, that would demonstrate its utility and then maybe from there the argument would be it should be expanded and expanded.
DR. IEZZONI: Bob has the response and I think I might anticipate where he is leading.
MR. GRISS: Well, I think Andyµs point, I think a demonstration project where you have a managed care plan or a clinic actually spends 24 minutes if that is what it takes in order to capture information that then has utility in providing perhaps a more flexible benefit package and demonstrating changes in health status for the enrollees over time. I think that kind of research would be one desirable way to proceed because there are different ways of filling out that classification and it is not clear that you would really want to do it as comprehensively for every enrollee. I really was impressed with Rayµs point that different consumers come in with different problems and it really isnµt necessary to fill out all those forms for each individual but just go with what is problematic to that individual.
I really think that there is a marketing opportunity here to get consumers excited about an assessment tool, a functional assessment tool that allows them to start identifying problems that are not strictly medical problems but functional problems that they can then bring into the health care system.
I know it is going to be resisted. It will be resisted by the insurers who have very strict definitions of medical necessity but that ultimately is going to be the battle that I think we have to fight because there really, if we really want to improve peoplesµ functioning the non-clinical interventions are likely to be the more cost effective ones and frankly, genetic engineering is a pretty expensive operation and a lot of the new drugs and all that that is coming on the scene are really going to eat up the health care budget. We need to reorient the health care system. This is a potential tool for doing it.
We see how drug companies sell us images that if you just swallow this pill, you can have all these wonderful experiences and I think we should capitalize on peoplesµ desire to ask for the moon but within an ICIDH-2 framework identify the goals that they have at the participation and activity level and see to what extent we can get the health care system to be required to contribute to that.
DR. SELTSER: One thing that occurred to me, again recent things have come out of the newspapers, is the awareness of how large a problem the Alzheimerµs Disease is and how many of the elderly we expect are going to have Alzheimerµs. And the need for some sort of functional assessment to determine early signs of Alzheimerµs. It seems to me the cognitive functioning as a routine bit of information that is collected at the time of each encounter would be a way of perhaps inexpensively screening for Alzheimerµs or at least having some indication of what is going on rather than waiting until the neurologists come up with a tool that may take, in fact, $3,500 and the Medicare and others will pay for because it is a screenign tool.
I think we havenµt used the potential of using this as a screening mechanism.
DR. THREATS: Also, the period, talking about time, it is not going to be a make or break. Of course, it has had different levels. Two levels, reach up to the chapter levels. In other words, everyone wouldnµt be required to go through all of those. Can you walk, can you take care of yourself, can you eat. You know, it is some of these things at the broadest level when you take as long. There will be people later down the system that will learn more detail but the key is unless you are identified at that level that you never get put into the right track.
Also, of course, there is going to be more time when, there is going to be no way around it. People are going to take longer or people are going to HRS before going to the Slacken(?). But you do get quicker at things because any person usually works with a certain set of things and as you do it, you will get quicker. The people in the, who evaluated actual patients were able to do it in five to ten minutes.
DR. IEZZONI: Okay, in a busy primary care practice you have to do it in less than a second actually. It is kind of like one of you showed a check box or you circled a code or something like that. That is how quick it has to be.
DR. THREATS: Right, but that could be on one sheet at lower levels, that could be on one sheet.
DR. IEZZONI: Yes.
DR. RUGGIERI: Could I just suggest a quick answer to Dr. Kramerµs question and I am going to volunteer the American College of Rheumatology here, even though I donµt speak for them officially.
The American College of Rheumatology has stipulated criteria by which one can declare or assert improvement in a rheumatic disease, say rheumatoid arthritis. One of those criteria is to show improvement in a quote, unquote, validated health assessment questionnaire.
One possible pilot approach might be to take those health assessment questionnaires and code them in ICIDH and ask for some pilot studies since that is becoming part of the routine practice to care for patients with rheumatic diseases. One possibility.
DR. IEZZONI: Sounds like a great idea. Rheumatologists and pediatricians would be a sympathetic decision group to start with. Start with cardiologists. Michael Wolfson had a comment.
DR. WOLFSON: Or two or three. I heard several levels of points being raised. At the level of general principle it sounds like there is virtual unanimity and I certainly agree personally with the idea of including some sort of functional assessment. There is the question, the next question about what is the purpose of the assessment and let me divide it into two broad groups - epidemiological and individual patient error. It seems tome the kind of assessment one does depends on the circumstances. We in Canada in the epidemiological level have already been getting sort of a head start on this because we are linking our health surveys to our administrative records so we can bring together not ICIDH classified but national population health survey or health and activities limitations surveys.
There is no question that empirically it makes a difference to the story. It adds explanatory power. But in an individual case you are talking about the logistical problems.
Just because there is a consensus that functional assessment is a good idea does not mean and it does not follow that the ICIDH is the proper mechanism to use to ground it and what I was doing first thing this morning was raising some questions. I wish to heaven that it was able to do that but I am raising questions about whether in its current state it can do that and finally a word of caution if I put a different hat on.
I look at the processes that we are going through in Canada. Even to put something as rudimentary as staging of cancers, we have site routinely captured on our administrative data. We donµt have stage or some standard things about cardiology on the encounter form and that is what causes me to pause. If people are going to invest huge numbers of person years of effort, time, sweat, energy, getting something as radically different as functional assessment into the standard encounter forms, I sure hope that investment is on the right horse. Mixed metaphors.
DR. IEZZONI: We are not forgetting at all what you said to us and the cautions that you had this morning, Michael. We are just exploring what peoplesµ opinions are and suggestions are. Thank you for reminding us about that. Ray has a comment.
DR. SELTSER: I would like to say that I would be willing, frankly, to settle for an item on the encounter form which verified that a functional assessment had been done. I am saying that something has to be done to reverse this situation where the physicians donµt think the functional assessment is important because the ICD is the driving force. The disease model is being perpetuated by the encounter form.
If the reimbursement mechanism required them to at least certify that they had done a functional assessment, whether you think it is the ICIDI -
DR. IEZZONI: We all know how to do one. According to the Rheumatologists and the geriatricians in the room, the primary care doctors donµt know how to do it.
DR. SELTSER: And that is, in fact, why I suggested that some of these things be part of the objectives by the year 2010. We are going to have this particular thing in place.
DR. IEZZONI: So you put it in all medical school curricula.
DR. SELTSER: Absolutely. That is why Susan was one of the important people we brought in.
DR. IEZZONI: We are all turning to look at Susan.
DR. WALLACE: Just two points. One, we were talking about how challenging it might be to code and how much time you took per case - 24 minutes I think. Gee, thatµs a long time, et cetera, et cetera. In the real world, though, this was for treating. In the real world we are not asked to do that. We are not asked, I have never been asked to code something like that but what I have been asked to do is evaluate a patient and when I evaluate a patient, and this is kind of what I was talking about earlier. I didnµt have my little form so I just made some up but we used a SOBE(?) format, objective, objective, assessment, plan. Under objective we create forms that simply instead of asking the clinician to hand write a narrative, we simply put under orientation here are all the possible ICIDH-2 codes with the labels that you are used to calling these things by so now evaluate, you donµt have to use a RAINBO, use whatever you want to use and evaluate the patient across the typical domains but when you do it, instead of my asking you to do a cumbersome narrative, simply circle zero, one, two, there, four, and how I got my ICIDH-2 code here so I know what the ICIDH-2 number is.
So it is really simple so when we talked about 24 minutes doing the training, I donµt really think it is going to add a lot more time, especially if you come up with a format like this.
And the other thing is, for physicians, I would imagine yours is going to be a lot grosser than this, but just as physicians send out forms before patients come and ask them to fill all this paperwork out so they have some orientation, what we have been doing and maybe physicians can do the same thing to simplify it, but I always, after the first visit, explain the form, give it to the person so that they bring the participation form back on the second visit. Physicians perhaps could come up with a simplified version, send it out with the other form you send everyone and have one bring it in with them and then you can just look at that information.
DR. IEZZONI: That is an interesting notion. I sense a lot of pilot study research designs being kind of proposed here. Anyway, yes, a final comment.
DR. WALLACE: Just one comment. I donµt have the answer to this but the challenge I think is how can we all work together to code the patient accurately? Not that one person has to do it all, I think we need to work together to code the patient.
Dr. IEZZONI: Thank you. This has actually been really terrific. And I again want to thank Susan and Paul and Gerry for pulling together a great group of people and to all of you for coming and helping us think about this. Hopefully sometime by this fall we will have figured out what we are going to recommend but we will keep everything in mind as we are deliberating.
So thank you very much. Maybe I will see some of you tomorrow but if not, safe journeys home and thank you again.
(Whereupon, the meeting was recessed at 4:30 PM, to be reconvened the following morning.)