Hubert H. Humphrey Building
200 Independence Avenue, S.W. Room 325A
Washington, D. C.
MEMBERS PRESENT:
STAFF PRESENT:
ALSO PRESENT:
LARRY O'BRIEN, KATHERINE JONES AND BARBARA LETHENO
CHAIRMAN IEZZONI: I think we have a quorum of the committee members here so, Marjorie, I think we are going to get started.
MARJORIE GREENBERG: Sure.
CHAIRMAN IEZZONI: So, hi. I am Liza Iezzoni. This is the Subcommittee on Populations and we are going to talk this morning about what we are going to do for the next year, but first let's introduce ourselves around the table because there are some folks here who are new. Dan?
DAN FRIEDMAN: I am Dan Friedman, a member of the committee, with the Massachusetts Department of Public Health.
PAUL NEWACHECK: Paul Newacheck with the University of California at San Francisco.
MARJORIE GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CDC, and Executive Secretary to the Committee.
DALE HITCHCOCK: Dale Hitchcock, HHS Data Policy Office, staff to the subcommittee.
SHEILA PACK MERRIWEATHER: Sheila Pack Merriweather, Office of Minority Health, here in Olivia Carter-Pokras' stead. Thank you.
SUSAN QUEEN: Susan Queen, Health Resources and Services Administration.
JERRY HENDERSHOT: Jerry Hendershot, NCHS, CDC, staff to the committee.
VINCENT MOR: Vince Mor, Brown University, member of the committee.
BARBARA STARFIELD: Barbara Starfield, Johns Hopkins University, member of the committee.
ELIZABETH WARD: Elizabeth Ward, member of the committee, Health Information Institute.
LARRY O'BRIEN: I am Larry O'Brien.
KATHERINE JONES: Katherine Jones.
BARBARA LETHENO: Barbara Letheno.
CHAIRMAN IEZZONI: And Kathy Coltin.
KATHRYN COLTIN: Yes.
CHAIRMAN IEZZONI: Stan Edinger. Great. There is a long line to get into the building? Is there an event here today?
VINCENT MOR: Those for room 800 are standing in line. I got in just ahead of them, busloads and busloads.
CHAIRMAN IEZZONI: Interesting. Okay. I have the sad announcement that David Takeuchi has decided to resign from the NCPHS. So he will not be here today and will no longer be participating with the committee, and Marjorie and John are going to have to put their heads together and decide, you know, what to do about that at this point, but we will miss David and wish him well.
BARBARA STARFIELD: That leaves another vacancy, I suppose.
CHAIRMAN IEZZONI: Yes, it does. On our subcommittee. Exactly. Exactly. We seem to have this interesting--
(Laughter.)
MARJORIE GREENBERG: I can share some good news on the other side that Dr. Andrew Kramer--
CHAIRMAN IEZZONI: Andy Kramer--
MARJORIE GREENBERG: --has been invited to join the committee and has accepted.
VINCENT MOR: Oh, great!
CHAIRMAN IEZZONI: Yes, from the University of Colorado.
MARJORIE GREENBERG: He plans to be at the October 28th and 29th meeting of the subcommittee, and I think he's going to be up for the November 3rd, 4th, and 5th meetings also. We've given him all the dates. I think he has a conflict with February, but other than that he's got all the 2000 dates.
CHAIRMAN IEZZONI: Great. All right. Let me just start by saying that I would like to continue our former process whereby at the breakout sessions at the Full Committee meetings we might talk about other topics, as well. Like I think yesterday Clyde Tucker's presentation was actually very clear and very helpful and we need to obviously monitor the implications of the OMB Race and Ethnicity Classification System for the Year 2000 Census and other activities in federal data collection. So I would like to just invite members of the subcommittee to let me know whether there are other topics that you think could be done in an hour, or an hour-and-a-half, or maybe even two hours at the breakout sessions. I think it would be nice to hear again about the current CAPI version, the Computer Assisted Interview version of the NHIS, because that's something that was implemented a couple of years ago and it's been awhile since we've kind of just gotten an overview of what's happening with the NHIS.
So, Jerry, I think you heard about my interest in having us just have kind of revisiting where that is, what the CAPI experience has been like, at a breakout session maybe later. But people should let me know whether there are other topics that you would like to just have an hour or an hour-and-a-half on at the breakout sessions.
VINCENT MOR: Very specific to the topic of Functional Status Measurement is the current work that the folks at NCHS are doing trying to recalibrate the '97 and beyond questions with the prior questions.
CHAIRMAN IEZZONI: Yes. It's very complicated--
VINCENT MOR: Right, and so--
CHAIRMAN IEZZONI: --because they weren't asked--
VINCENT MOR: So it will be interesting to see. I was at the presentation in the summer sometime, and it would be interesting to know what the status of that is particularly for the Functional Status.
CHAIRMAN IEZZONI: Yes.
PAUL NEWACHECK: Yes, I think that's a great idea. Also, maybe we could have an update on the MAPS-II?
CHAIRMAN IEZZONI: Yes, I think that we should have a session on surveys. Dale?
DALE HITCHCOCK: You might want to hear about the NHANES plans for the designated population series.
CHAIRMAN IEZZONI: That would be great. All right, now Marjorie I kept hearing yesterday that our next Full Committee meeting is in March, but--
MARJORIE GREENBERG: No, it's February 23rd and 24th. It is definitely February 23rd and 24th.
CHAIRMAN IEZZONI: I know, because it totally overlaps with an IOM committee that I'm on. But I think maybe we should plan, Sherry, let's plan for the breakout session at the February meeting to talk about the MAPS and the CAPI and the NHANES. Let's have our breakout session be about that. Does that sound okay with folks? And we might also want to talk a little bit about our current initiative, but the primary focus of that breakout session will be an update on the survey.
MARJORIE GREENBERG: You'd probably want a minimum of two or three hours.
CHAIRMAN IEZZONI: Two-and-a-half hours, yes.
MARJORIE GREENBERG: For the breakout session.
CHAIRMAN IEZZONI: Yes.
MARJORIE GREENBERG: Okay. We're actually starting to plan the next few meetings.
CHAIRMAN IEZZONI: Okay. All right. Now let's then move on to talk about the Functional Status initiative that we're going to undertake. I think we are going to have to be very clear about our language here so it feels inclusive to people, because that is my intention and our intention when we spoke last May about what we're doing was to try to be inclusive. Let me start by asking Patrice--I guess she's gone to photocopy, Kathy? Has she gone to photocopy your stuff, Sherry? Okay, I just want to be sure that we confirm once again the dates for January--Well, October we know, the 27th and 28th. Then the January dates, the April dates, and the July dates. Okay, that is January 24-25; April 13-14; and July 17-18.
MARJORIE GREENBERG: Right. What was the April one again?
CHAIRMAN IEZZONI: April 13-14.
MARJORIE GREENBERG: And October is 28-29?
CHAIRMAN IEZZONI: Yes. Well, yes. Okay, I'm sorry. No, I was wrong. I'm teaching the first two days of that week in Boston and I got the dates mixed up. It's the 28th and 29th.
MARJORIE GREENBERG: Thursday and Friday.
CHAIRMAN IEZZONI: Because I'm teaching the 26th and 27th. So it's the 28th and 29th.
STANLEY EDINGER: How about April?
CHAIRMAN IEZZONI: April 13th-14th, I think. Now my plan is to have those meetings on the first dates start at 10:00 o'clock in the morning so the West Coast people won't be too jet-lagged, and Kathy and I can fly down and not be horribly late, go until 5:00 with kind of hearing-type of format. The next day, maybe start the morning with a hearing type of panel, and then maybe have an hour or two and adjourn at 1:00, an hour or two for committee discussions, and then adjourn at 1:00 so people can try to make a West Coast plane.
ELIZABETH WARD: So it would be 8:30, probably, the next day?
CHAIRMAN IEZZONI: 8:30 probably the next day, going until 1:00 without lunch, because I don't need to say why. We will obviously take a break, but having lunch at the airport--
MARJORIE GREENBERG: Pack food, in other words.
CHAIRMAN IEZZONI: Pack food, yes. So are those dates on people's calendars, then?
BARBARA STARFIELD: The only one I can make is the January meeting.
CHAIRMAN IEZZONI: That's the only one that you can make?
MARJORIE GREENBERG: Which one?
BARBARA STARFIELD: The January one.
CHAIRMAN IEZZONI: Patrice had a terrible time scheduling this.
MARJORIE GREENBERG: First we had the contractor working on it, and then we had to take over--
CHAIRMAN IEZZONI: We had the contractor, Dena Battle--
MARJORIE GREENBERG: --in-house to work on it.
CHAIRMAN IEZZONI: --to work on it.
MARJORIE GREENBERG: It was difficult.
CHAIRMAN IEZZONI: It was really impossible. I apologize and regret that you can't be there, Barbara, especially since we want to make sure that pediatrics is represented. Okay. Now, Marjorie, at some point we need to think about whether we would like to have one of these meetings be elsewhere other than Washington. I think, frankly, that it would be a good idea to have a meeting perhaps in Berkeley, or some place where the disability community resides in full force, or just some place outside of Washington. We also in a conference call that I had a week ago with Paul Plasek, Jerry, and Carolyn, talked about the possibility of having a meeting Chicago, as well, especially when we want to include some of the provider groups because the big associations are in Chicago. So we were going to ask you to keep us in touch with our travel budget, and you are going to need to tell us what is feasible. Because we don't want to come up with ideas that are going to be infeasible.
MARJORIE GREENBERG: Now December 7th, the afternoon of December 7th, the Executive Subcommittee is meeting--
CHAIRMAN IEZZONI: Yes.
MARJORIE GREENBERG: --and that is to do long-range planning for the budgeting for the committee. So it is important that you know what you've decided your needs are, and then we will have to rationalize it all. But you think possibly you would like to have two meetings outside of Washington?
CHAIRMAN IEZZONI: Well why don't we do this. Why don't we talk for the next half hour about what we want to do, and then before we adjourn let's revisit that issue. Because I'd like to hear from other members of the committee how you feel about this.
MARJORIE GREENBERG: I mean just off the top of my head, I would say it's probably easier to get the professional associations, et cetera, to Washington than like the disability advocates--
CHAIRMAN IEZZONI: That's right.
MARJORIE GREENBERG: --or communities. So I would give a higher priority to the first one.
CHAIRMAN IEZZONI: Yes. Okay.
MARJORIE GREENBERG: But I mean, also, you know, if we are able to get public meeting space, also, it would not necessarily be that much more expensive. But there are additional costs associated with it.
CHAIRMAN IEZZONI: Well I just think this is an important project to have it appear to not be within the Beltway.
MARJORIE GREENBERG: I would agree.
CHAIRMAN IEZZONI: All right, great. Let me talk for a few minutes about what I'm thinking, and then I would like your reactions. Okay, we all remember the Core Data Elements Project and about how in the Core Data Elements Project we put in a placeholder for Functional Status. And we, frankly, didn't define it because stated it needed thought as to how to go about defining it. In addition, we have heard that some of the Data Standard Formats have placeholders in them for Functional Status, or could have placeholders in them for Functional Status. So there is an interest in having some information about Functional Status, but nobody thus far as really kind of tackled the issue and thought through what this would mean in the context explicitly of administrative type transactions: enrollment, encounter, claims attachments, those kinds of vehicles for data collection. Obviously, collecting Functional Status in the context of computerized patient records is ultimately also going to be an issue. It is not done very well in paper records, and so a question might be whether it could be done better in computerized records. But heretofore it hasn't been done well in paper records. But our initial focus would be on encounter and enrollment types of forms and claims attachments, the administrative transactions. When I talk about Functional Status, what I really mean is aspects of how people live their daily lives. This goes from cradle to grave. Little tiny people as well as elderly people, people who have no defined diseases as well as people who have clearly defined health conditions. This is not a project specifically about "disability." I think we need to underscore and emphasize that. Because people who aren't self- classified or classified by others as disabled also function in their daily lives and we want to know about how everybody functions. When I say we want to learn about how people function in their daily lives, that includes a variety of different potential dimensions. It includes sensory abilities: the ability to see; the ability to hear; the ability to 1 speak. It includes the ability to move purposefully, independently, and possibly with the assistance of technologies. It includes the ability to think productively, you know, cognitive status. It includes mental health, behavioral health considerations. We spoke yesterday about depression. You know, how they're going to identify people who are depressed I think is going to be a very critical issue for that QUIC initiative that John Eisenberg was speaking about. And so how I envisioned this project is to be kind of a thought project, a conceptualization project to hear: Number one, what people out in the field who might use these data would want to know. So to hear first from the customers of the data. This could include people all the way from capitated plans who want better risk adjustment because, frankly, knowing something about Functional Status adds to the information to predict future costs. It can include people who are quality management people, people who are trying to manage populations of patients; people who are trying to monitor the health of populations of patients. So we would want to hear from the user community, the people who would be the end users of these administrative data.
Next I think that we want to hear from people who have been experts in collecting information about Functional Status. That will play very much off what Paul Plasek and Jerry Hendershot have been involved with, which is the Interagency Subcommittee on Disability Statistics, which frankly is an impressive organization. How many years has that been operating now, Jerry? It's been over a decade.
JERRY HENDERSHOT: Oh, yes, about 15 years.
CHAIRMAN IEZZONI: 15 years, yes. They have monthly teleconferences, including bringing in people from WHO in Geneva. When I was down on September 8th, the WHO people were there. And people from literally all over the country, from Atlanta, from San Francisco. So hearing from those folks who have collected data, although the challenge for us in learning from them will be to focus on the administrative transactions. Because the way that they have often thought about it has been more broadly in terms of survey context, or more specific data gathering projects. So to hear from them. Then the third group that we need to hear from are instrument designers, people who design ways to capture functioning. In this context, we need to hear the whole issue about should it be person self-report, or report from providers? Is it capacity versus performance? You know, all of these very thorny issues that have been debated, and no consensus has been reached, but debated in the measurement field for many years. So that is the third group we need to hear from. The fourth group we need to hear from is people, people who are living out in the community. Some of them will be self-identified people with disabilities. People like the United Cerebral Palsy. People from Families U.S.A. People from other constituencies that might have an interest in how these data would be reported and how they would be used, and who would be reporting the data, and what would be their concerns about it. And then the fifth group that we would need to hear from is the provider community people who may be asked to report an ICIDH code of a claim, for example, and their feelings and attitudes and suggestions about this. So there are these five constituencies that I think that we need to hear from: the consumers; the people who have been collecting these kind of data, or similar data; the people who know how to measure, or think they know how to measure, these quantities; the people community, the patient or the consumer representatives; and then finally, the provider communities. 1 Now we have four meetings set up. I don't think that each meeting has to be a single-topic type of meeting because, frankly, it probably won't work that way. There are a lot of consumer groups, for example, in D.C. all the way from the Paralyzed Veterans of America, to United Cerebral Palsy, you know, that we would probably want to hear from in D.C., but I think it's also going to be very important to go out, as I said, to the West Coast, maybe, and hear from consumer groups there, but also from provider groups and others. My vision for what the final outcome of this project will be is not a specific suggestion of this is how we should fill the place-holder, but my vision is that what we will come up with is a statement, a report about the attitudes of stakeholders in the field. Again, this is something that our committee does very well, is to gather information about how people feel about this. And then, maybe a suggestion for a process that could be undertaken to test different options to see whether they're feasible. Because, frankly, this could be expensive; it may be infeasible; it may just be such unreliable data that it's not valuable at all; and so ultimately our project might result in a proposal that somebody does a demonstration project looking at these different options, or those different options. We do have money to hire a contractor, and the idea is to work with Westat. At this point, Westat has I think it's a $29 million contract or something like that from Social Security Administration at this point to do the redesign on the disability evaluation for Social Security. And in the context of that, they have done a lot of kind of background work on tools, instrumentation, how to measure functioning. Again, this is functioning broadly defined because the biggest and most growing population of Social Security Disability recipients are people with mental health problems right now. So again this goes from Functional Status through Mental Health issues. So Patrice has photocopied a draft of a contract that Jerry Hendershot has come up with that we might want to talk about around the table for the Westat people. Okay, thank you.
(Document distributed.)
MARJORIE GREENBERG: Lisa?
CHAIRMAN IEZZONI: Yes.
MARJORIE GREENBERG: We can discuss this after we look at this, as well, but I think it would be good to really think through from the beginning what types of issues are likely to arise around privacy and confidentiality.
CHAIRMAN IEZZONI: Well that is just what I was going to say as soon as Patrice finished handing this out. I want this to be a joint project with the two other subcommittees, because frankly this has a whole bunch of issues about administrative data sets and, you know, Simon's subcommittee--
MARJORIE GREENBERG: Right.
CHAIRMAN IEZZONI: --and it also has a whole bunch of privacy issues. So in my e-mail that I sent out recently I asked Kathleen Crawley about how she would like to be involved, how the Privacy Committee would like to be involved, and also Simon Cohen about how that committee would like to be involved. Because, absolutely, privacy issues, I speak about it myself. I mean, in fact I am speaking this Friday at this NIH Privacy and Ethics and Research Conference that is going to be held, and I talk about the fact that I might not be entirely open about my functioning if somebody was just to call me up and ask me about how I walk. So these are issues that I am very sensitive to from a personal point of view. And so, absolutely, confidentiality will be a major issue. Okay, let me stop there and let me hear from the rest of you. What do you think of this?
BARBARA STARFIELD: Does that have anything to do with what we just got, or is this completely different?
CHAIRMAN IEZZONI: What you just got is what Jerry Hendershot has drafted as a Task Order for the Westat people. So let's not look at that--
BARBARA STARFIELD: Because it's not consistent with what you said.
CHAIRMAN IEZZONI: I haven't seen this yet. This is--this is--what do people think of the kind of vision that I sketched? And people should be honest, because I would very much like this to be fun for people and enjoyable and something that people would learn from and feel that we're doing something productive and new.
ELIZABETH WARD: In terms of the conclusion being recommending a process for testing feasibility, are there likely candidates for that? Is it something that you would think this committee would take on as sort of Phase II, how likely is someone here or there to be interested in taking that recommendation and going forward?
CHAIRMAN IEZZONI: I think it is going to depend on what the recommendation looks like, especially if we hear strongly from the risk adjustment community that having Functional Status information will really improve our ability to set capitation levels in a more accurate, reasonable way. It could be something that HCFA might be interested in. AHCPR, we heard from John Eisenberg yesterday that risk adjustment was one of their major methodological topics. For quality measures, Functional Status is going to be an important risk adjustment consideration and heretofore we have simply not had that kind of information to use for risk adjustment for quality measurement. So it may be AHCPR. I think that we are just going to have to see how it plays out. But I guess the reason that I articulated it the way I did, Elizabeth, is because I think the issues are going to be so protean that we are just not going to be able to say this is how you should fill that placeholder on the core data elements. And there are going to be tons of feasibility issues.
VINCENT MOR: I think I understand. I mean, you make a good case for it being broad, but if the desire is--if it emerges that people from the risk adjustment community are really interested, the challenge and guidance is far more explicit, and there are enormous issues even within that very narrow definition and interpretation of what Functional Status is as a technical adjustment. For example, thinking about Functional Status as an adjuster for a hospital admission is radically different than thinking about Functional Status as an adjuster for an enrollment record for Medicare Managed Care, beneficiary of Medicaid Managed Care kind of beneficiary. And the question is whether delving into some of the rationales for those technical differentiations is going to be exceedingly boring.
(Laughter.)
VINCENT MOR: Not--it will be very technical to have a hearing about that, unless it's just--
CHAIRMAN IEZZONI: I don't think we will get down to that level of technical detail.
VINCENT MOR: I guess my point is that that may ultimately be what is useful.
CHAIRMAN IEZZONI: That may be what's useful. I forgot to also mention the Healthy People 2010, because that's another area which we do not have good data on, but obviously there is a huge interest in. So I think, Vince, that you have just highlighted the fact that this project is laying out what the issues are. You know, and if HCFA decides that they want to take it further in a demonstration project, we will have outlined the issues at a high level, and they will then need to, if risk adjustment for setting capitated payment, I can't imagine it will be risk adjustment for DRGs, or for a hospital payment, because I think that's kind of water under the bridge at this point. I think they would then need to set a process in place that would look at the technical issues, but we're not going to look at the technical issues of that, I don't think. I don't think we have time to do that. Paul?
PAUL NEWACHECK: I think this is a very important project. I'm thinking from my perspective of children. We really don't have good measures of Functional Status now for children. We really need them desperately for risk adjustment purposes. We need them for quality monitoring purposes, managed care. We need them for population monitoring. So to the extent that this process could inform us on those issues, I think it would be extremely valuable.
CHAIRMAN IEZZONI: We are going to need your recommendations for who to have on the panels. You know, I think that this process is only going to be as good as the people that we get to come and talk to us. So hopefully--Jerry and Susan Queen are the two people here today who will be helping us with the staffing of this, but you will be hearing from Paul Plasek and Carolyn and Jerry and Susan requests to get ideas for people to come and speak to us, because I agree we need to hear about that.
BARBARA STARFIELD: I think the first thing we really need to do is to figure out why do we want to do this.
CHAIRMAN IEZZONI: Well that's why I thought the customers should come first.
BARBARA STARFIELD: Paul mentioned a couple of things when he started off. I mean I don't know that I would buy the risk assessment/risk adjustment one because it doesn't necessarily have resource implications in the way we think of it. I mean, I don't mean to open that discussion now, but--
CHAIRMAN IEZZONI: Yes, because there are research studies on both sides of that question.
BARBARA STARFIELD: Yes. So why do we need these things? For what purpose do we need anything? That's really what we need to do first.
CHAIRMAN IEZZONI: That's why I thought the first session, the October session, should be the customers session. You know, who wants this? Why do they want it? What do they want?
VINCENT MOR: Yes. I think that is a very good point because what Paul was just suggesting was that we need these measures. That's a really different notion than, well, how do you actually do this in an administrative system? I mean, just the very idea of five or six different measures in a basket that I'm a person in a hospital or in a plan and I have to pick and choose based on-- it's very complicated.
CHAIRMAN IEZZONI: That's why I would like our first meeting, the October meeting, to be hearing from customers. We need to get your recommendations for who we should try to hear from. Elizabeth, and then Dan.
ELIZABETH WARD: Go ahead.
DAN FRIEDMAN: It strikes me that there also may be obviously different types of customers for different parts of the continuum, but also a different volume and intensity, as it were, of customers. One thing that you stressed which I think is really interesting is functional status and not just functional limitations.
CHAIRMAN IEZZONI: Um-hmm.
DAN FRIEDMAN: And I think that getting sensitivity on the non-disability end of the continuum would be very important for a variety of purposes, but it also may be a harder sell, as it were.
BARBARA STARFIELD: What do we mean by "customers"?
CHAIRMAN IEZZONI: People who would use the data. Who wants the data. You know, like the healthy people, 20-ton people, the HCFA people, health plan managers, quality assessors--
BARBARA STARFIELD: Like everybody.
CHAIRMAN IEZZONI: Yes.
VINCENT MOR: Providers.
CHAIRMAN IEZZONI: Providers. What do they want to know.
PAUL NEWACHECK: Lisa?
CHAIRMAN IEZZONI: Paul.
PAUL NEWACHECK: I guess, and maybe Vince raised this issue in his comments on my comments, I guess I think more broadly about this. That is, that having the information for administrative transactions would be an ideal end point but just knowing more about, or learning more about and improving measures of functional status would be important in its own right even if it did end up getting to the point of administrative transactions. It seems like there is such a void, at least in the children's area, especially for young children that just moving the field forward would be enormously valuable. So ideally we would get to that end point, but even if we make some progress in broader areas that it can be done.
ELIZABETH WARD: Would we be willing to not make any conclusions about the rest of the process until we have one or two meetings about the customers? I think part of what I am still with Barbara about is I don't want to come to any conclusions yet about whether we can go forward, whether there is enough justification after we hear from the customers. I would like to wait until I get that information to know whether we should go any farther.
CHAIRMAN IEZZONI: That is reasonable. I don't know what the contract process is like. There is some time sensitivity to letting a contract with the budgets and, you know, when the money is available and things like that. So I think that that might be an issue.
MARJORIE GREENBERG: I guess my assumption is the committee over a period of years has been hearing from so many different people. I mean, for example at the June meeting when Kathy asked Gregg Meyer and Steve Klausner if you could have one additional piece of information and administrative data for quality, what would it be? And they said something like functional status. They both said that. They said other things, you know, and expanded on what they meant, but I don't think it is a huge leap to say, well, if you're going to spend a year on this that doesn't mean you've come to a conclusion as to where you're going to come out on that.
CHAIRMAN IEZZONI: Right.
MARJORIE GREENBERG: I mean, I think if enough subcommittee members really question whether this is worth, or reasonable to spend that period of time on, then I think you probably need more discussion because I think the sooner we got a contractor involved the more utility that would be to your effort.
BARBARA STARFIELD: But, you know, that's only one purpose. They really want it for outcomes, to assess impact. But then the risk adjustment is a whole other thing. They're describing the needs of the population apart from any interventions.
MARJORIE GREENBERG: Right. Quality of life.
BARBARA STARFIELD: So there's just a bunch of--
ELIZABETH WARD: That's my reaction, too. We can either take on this much and decide that's satisfactory, or do we want, because of what we hear from the customers, to do--it's not a do or don't do it, it's what of it do we get the most bang for.
PAUL NEWACHECK: I think that's a good idea.
ELIZABETH WARD: I don't have to be convinced that it's an area, but maybe part of why no one--everyone is saying over and over again for the last five years or more, this is important; why has nothing happened?
BARBARA STARFIELD: In 15 years, why are you still working on it.
ELIZABETH WARD: What is it about "it" that is making us all still say it's important but nobody out there has spent a dime--that's not true, except in articles. It's trying to figure out if we have one--our goal is to have one more statement of it being important, and a recommendation for someone else to do some more work. I am just trying to feel that practical, really good about what we did that it's really made a difference. Something new is going to happen to break this sort of logjam about everybody saying it's important but nobody actually goes in to do it.
PAUL NEWACHECK: We have a two-day meeting before the contract starts, so could we use the first day of that meeting to hear from some of the customers about what they think; and then spend the second day--
CHAIRMAN IEZZONI: Yes.
PAUL NEWACHECK: --talking about what we think is important: are we going to go for breadth and not depth? Or depth in a narrow area?
ELIZABETH WARD: How could we partner them to get over this hump.
PAUL NEWACHECK: And at that point then we can revise this as needed.
BARBARA STARFIELD: Well I mean the purpose of the contract is just not at all where we are.
CHAIRMAN IEZZONI: I'm sorry, Barbara? I haven't had a chance to look at it, so--
ELIZABETH WARD: Well I think that's what we're talking about right here, is what is that contract.
CHAIRMAN IEZZONI: Well, this is actually--
JERRY HENDERSHOT: Could I just say a couple of things?
CHAIRMAN IEZZONI: --this is kind of what--Yes.
JERRY HENDERSHOT: I would say a couple of things about this. First of all, it is a draft of a request for task order, so it is far from a done deal. It's got to go through reviews, and your comments are needed on it, and so on. The other thing to keep in mind is that this contract is only a part of the larger project. I think Lisa's been talking about the larger project. The contract supports that larger project. So the contract does not describe the whole project.
CHAIRMAN IEZZONI: And I think that the purpose of the contract, to look at the feasibility of recording measures of functional limitations on health administrative records, is what we originally were talking about. Because remember the whole place-holder issue and the core data elements, and the place- holder issue on the administrative records, the enrollment encounter records. Let me just also say that there is an initiative being spearheaded by people at the CDC, Don Lawler specifically, to think about adding the ICIDH, the International Classification of Disabilities Impairments and Handicaps, to add that to the HCFA 1500 equivalent standard. So I think that if we can have a contract to look specifically at the issues around adding these kind of data to administrative transaction records, that would be extremely informative and helpful. Because, remember, those administrative and encounter and enrollment records are what we get the diagnostic information on that we use for monitoring health care right now.
And so we are only getting a piece of information. We are getting diagnoses. We're not learning anything about how people live their daily lives based on that information.
MARJORIE GREENBERG: I think the word "limitations" is--because I think it was mentioned that you really wanted to look more at maybe functional status broadly, which includes limitations, but--
CHAIRMAN IEZZONI: Yes. Exactly.
MARJORIE GREENBERG: --that word might be the problem.
CHAIRMAN IEZZONI: Right. Okay. Yes. We do not want this to look like a disability-centric project because that will marginalize it implicitly. And so that does need to be clarified.
BARBARA STARFIELD: Doesn't feasibility depend on what it is? And since we don't know what it is, how can we talk about a feasibility of adding it?
CHAIRMAN IEZZONI: Well I think that we will need to work with the contractor to come up with the answer to that question, Barbara, but they have been doing a lot of work on looking at functioning and coming up with conceptual models for functioning that we should be able to look at to help them focus on what they might be thinking about for adding to the administrative record. You know, for what they've been doing for the Social Security redesign. It's been a very broadly constituted look at functioning and instruments for measuring functioning, and coding sets for capturing functioning like the ICIDH.
PAUL NEWACHECK: Was that for the Social Security Disability Insurance Program? Or more broadly than that?
CHAIRMAN IEZZONI: Yes. Their Westat- specific contract is for Social Security.
PAUL NEWACHECK: So it's just for adults, then?
CHAIRMAN IEZZONI: It would be for adults. But that's not that we want this contract--
PAUL NEWACHECK: I understand.
BARBARA STARFIELD: But by stating it this way, we're constraining the purpose already. We're saying if it's administrative data records, it's payment, period.
KATHRYN COLTIN: Oh, no.
CHAIRMAN IEZZONI: No.
KATHRYN COLTIN: I disagree. We use those administrative records for quality measurement, too.
BARBARA STARFIELD: Everything we've done in this committee with administrative records has been--
CHAIRMAN IEZZONI: Well this will be different, then.
PAUL NEWACHECK: Well this is specific. It says "enrollment," and "medical encounters."
BARBARA STARFIELD: I would prefer to see that more broadly defined than just "administrative records," then, at least in the context we've been working with administrative records that's been primarily payment.
PAUL NEWACHECK: I realize this is a draft, but it does seem a little narrow to me because it's basically saying the feasibility of recording measures, as opposed to evaluating measures that may exist, or perhaps developing, or modifying measures as needed. I think it's more than just simply recording measures, as if they already existed and what's the technical feasibility of adding them to a document or an electronic record, but rather to do a more comprehensive evaluation and, as needed, develop new measures.
BARBARA STARFIELD: Is a CPR an administrative record in our conceptualization? No? It's not?
KATHRYN COLTIN: No.
BARBARA STARFIELD: And yet we mean to include that, I think, don't we?
CHAIRMAN IEZZONI: Ultimately, yes.
BARBARA STARFIELD: So I think this is too narrow.
CHAIRMAN IEZZONI: Let's propose a process. The Westat people, Jerry, I think were going to be--we were going to request that they come to our October 28th-29th meeting, so why don't we do what Paul suggested, which is to hear from potential customers that first day; seeing whether we could get the Gridmeyer and the people who articulated clearly the quality interest, and Kathy might be able to help us come up with some names; and some of the names around risk adjustment. You will see on the second page--did Patrice also give you the second page? I was just brainstorming with Paul Plasek and Jerry and Carolyn over the phone, actually the day that Hurricane Floyd attacked us and Paul Plasek was at home knee-deep in water on his driveway, when he took the conference call. So it was kind of an interesting call. It was slightly scattered. But anyway, I was trying to come up with some names of people who might be able to inform us from the customer base, but I asked Kathy if she can help us think about some people from the Quality Measurement side. And clearly the folks who presented in June at that meeting, I think if we brought them back and asked them to really, really focus on what they meant when they said "we want functional status information," well what do you mean by that? What do you want to see, with what periodicity? What do you want it to look like? That would be helpful. Yes?
MARJORIE GREENBERG: I might just say something about this concept of administrative records that maybe will help put this in context. There is really this continuum of standardization activities that HIPA calls for. It starts with strictly encounter, enrollment, other payment transactions. But then it moves to claims attachments, which typically do include more clinical information to justify the services. But that really is kind of an open book what that could be. And then it leads to computer-based patient records. And of course I guess everyone's dream is that the information would actually be in the computer based patient records and you'll just excerpt what you need for the other transactions. But I think that is the continuum. So it's not like it is one versus the other, but I think obviously what you would collect in a clinical or a computer-based patient record potentially could be much, much more detailed. Then it kind of works its way back, also, and you could get a lot more in an attachment if you could get the agreement to fill it out. If you were really talking about something on every encounter, it's probably going to be very limited.
CHAIRMAN IEZZONI: Yes, like Don Lawler's vision of the ICIDH Code would be very limited. If we add it on the claims attachment, more information, that would be helpful. But again remember that I think we need to bring in issues about should it be person-self-report versus what the provider says. Because my observation is that providers often really do not do a good job of assessing function.
MARJORIE GREENBERG: Well we have included those distinctions in the Core Data Elements Report.
CHAIRMAN IEZZONI: Yes. So why don't we do that. Why don't we plan to have the first day of our October meeting be hearing from potential customers of the data, what they want to know. When they say they want to know functional status information, what does that mean? What would they be willing to pay for the information? What is the business case that they would make to their bosses about the need for the information? What form would they like to see it in? Would they like to see it in a code, a simple code, or a claims attachment? And then the second day of the meeting, we as a subcommittee would try to hash out a little more clearly what we would want the contract to look like; what we hope our end product would look like; how we can make sure that we represent all views, like the pediatrics' view, the mental health view; you know, 1 make sure that we have everybody at the table. So, Jerry and Susan, does that seem like adequate direction for getting together the October meeting? Do you have questions for us?
SUSAN QUEEN: I won't be present at that meeting.
CHAIRMAN IEZZONI: That's right. You said that.
BARBARA STARFIELD: What did you say?
SUSAN QUEEN: But Paul will be.
CHAIRMAN IEZZONI: Yes.
SHEILA PACK MERRIWEATHER: Lisa, I just want to offer OMH's assistance and support in any way that we can. Particularly we are interested in the Diabetes portion. So if we can help in any way, please let us know.
CHAIRMAN IEZZONI: I think it is going to be important not to have this initiative be too driven by specific medical conditions, because there is this whole medicalizing of function that I think this initiative should try to go beyond in a sense. Because we have reasonable diagnostic information, reasonable, and we're going to have, hopefully through electronic records, and claims attachments, and so on, reasonable laboratory information like hemiglobin A-1Cs and things like that. That would be markers for diagnoses. But what we want to know is whether people can walk, can see, and that will include people with diabetic retinopathy, as well as people with peripheral neuropathies from diabetes. But I would feel a little uncomfortable if we had this be a disease-specific type of initiative. But we would welcome your assistance. So hopefully the staffing can involve that.
STANLEY EDINGER: Lisa, you might also want to talk to either Lisa Simpson or Denise Daughterty at our agency because they've done a lot of work on the children's health. So they're good contacts on that.
CHAIRMAN IEZZONI: Yes, Lisa Simpson absolutely. Well, she might be a good person to have come speak to us at the October meeting. Do you want to see, Stan? I don't know how staff is going to work out inviting people.
STANLEY EDINGER: I could ask either Lisa or, if not, maybe Denise can do it. They've both been working on it for a long time.
CHAIRMAN IEZZONI: That would be great.
BARBARA STARFIELD: I think you should ask Lisa first.
STANLEY EDINGER: Yes, I was.
CHAIRMAN IEZZONI: Okay, Paul, and then Marjorie, whose eyebrows are getting furrowed.
(Laughter.)
CHAIRMAN IEZZONI: I saw it, and it's like, oh, eyebrows coming together!
MARJORIE GREENBERG: Just thinking.
CHAIRMAN IEZZONI: All right, Paul.
PAUL NEWACHECK: Besides hearing from the customers on that first day, I do think this item that you have on the draft agenda makes a lot of sense, the first one here, "Concepts of functional limitation: A review and update," just so we are all up to speed on kind of where the field is.
CHAIRMAN IEZZONI: Yes, yes.
PAUL NEWACHECK: I know a little bit about the children's area, but not much about adults--
CHAIRMAN IEZZONI: Yes.
PAUL NEWACHECK: --that sort of thing, so we could all be up to speed.
CHAIRMAN IEZZONI: Yes.
PAUL NEWACHECK: And maybe if there's some short background reading that might be suggested to get us started.
BARBARA STARFIELD: I could get you some stuff on kids.
CHAIRMAN IEZZONI: That would be good. You know, one of the things about reading in this area, and I've been doing a lot of it lately, is that a lot of it tends to be written around disability. You know, for specific initiatives to collect disability information. So I think what we would need to do is make sure that we understand that, even though some of the writings that we might read would be focused around that, that we want to look more broadly at functioning across the continuum of people's experiences. Also, sometimes the writings about this can tend to be a little bit jargony and tend to be written for other "disability researchers." You know, it's like the disability research community communicates with itself and nobody else. So I think that we would need to think very carefully about what to have you read, but I think that we should definitely try to find something to serve as kind of preliminary articles on this.
MARJORIE GREENBERG: This is what I was thinking to suggest. It obviously does come from a disability model, and I also don't want to, you know, overly push the whole ICIDH, but the conceptualization of that really fits so well what you're talking about: How do people live? So it starts with the impairments they have, but then their ability to function in a variety of ways. It looks at how the environment brings in assistive devices, or whatever; how that interacts, and then how all that--the bottom line is: How is a person, whether it is a child participating in school, or an adult participating in work, or in sports--I mean I think that is an interesting model that is worth looking at.
CHAIRMAN IEZZONI: Let me ask you guys, and then Dan. There are two pieces of text that talk about models of functioning. One is the introduction to the ICIDH, which I have read a number of times, which I think is helpful. It would at least give you a sense of how this classification scheme that frankly is used by a lot of countries, by a lot of other countries, but not by us, is how people think about it. And the other one is the Institute of Medicine has had a number of initiatives back I think it was in 1990 or 1989 they had Disability In America was a report that they wrote that had a model of disability. Then more recently they have had a project called Enabling America that took that original IOM Model and has frankly expanded it a little bit.
BARBARA STARFIELD: What's the second one called?
CHAIRMAN IEZZONI: Enabling America.
BARBARA STARFIELD: Enabling America?
CHAIRMAN IEZZONI: Enabling America. That report I have my own personal feelings about. For example, the Enabling America Report is about 200 pages long and they only have-- it's about assistive technologies. They have exactly one paragraph about wheelchairs in it.
BARBARA STARFIELD: Oh, my.
CHAIRMAN IEZZONI: And the paragraph is about wheelchairs for wheelchair athletes who might want to be using titanium chairs, or something like that.
BARBARA STARFIELD: To play basketball?
CHAIRMAN IEZZONI: To play basketball, exactly. So I have certain issues with the Enabling America Report.
(Laughter.)
CHAIRMAN IEZZONI: But I thought that the introduction about the model for functioning dealing with the environment and so on was actually helpful. The only reason I am hesitating on sending it to you is because both of these documents are written in a somewhat jargony way. It is just kind of inevitable. But I think probably it would be good for us all to see that. You know, in the Enabling America Report actually there is an executive summary of it that is about that thick (indicating) that maybe we could get copies from the IOM for all the committee members. That would at least kind of probably give you the model. Dan?
DAN FRIEDMAN: If there is anything, Lisa, in the literature, which I'm completely unfamiliar with the literature, but if there is anything in the literature that explores the distinction that you have been implying between functional status on the one hand and functional limitation on the other hand, and also really explores the full range, I would find it really helpful. Because I think in terms of sort of long-term payoff, of the possibility of developing population-based administrative data around health and not just illness--
CHAIRMAN IEZZONI: Right.
DAN FRIEDMAN: --that would be really key.
CHAIRMAN IEZZONI: It would be around health and not just on this. And that's why when I talk about this it is kind of well-being, it's kind of health, it's kind of the global consequence of all the diseases that people might have, or lack of diseases that people might have, on their ability to live their lives.
BARBARA STARFIELD: Can I ask a question about that? It seems risky to me to go with Westat, because their focus has been on the disability piece of it, and it's only natural that that's what they're going to focus on. That's what they've done work on. That's what their background is. I mean, do we still have the flexibility to think whether that's the best?
CHAIRMAN IEZZONI: Well let's put it this way. They were not exactly who we started out with, but there are certain expense issues and certain opportunities having to do with the federal contracting mechanism. I think that I share some concern about Westat. Can we go off the record for a second?
(Discussion off the record.)
CHAIRMAN IEZZONI: Back on. I think that they have done a large body of work reviewing the literature on instrumentation, and so we wouldn't need to have all of that replicated, except maybe for the pediatrics piece. When they come in October, I think we would have to be very, very clear with them that we need to know whether they have looked at the pediatrics literature. I think that we need to have a really clear, airtight contract with them, and we need to have a very explicit discussion with them about what we are interested in. Marjorie, do you have any comments on that?
MARJORIE GREENBERG: Well I think, given the discussion this morning, it would be premature to move forward with a contract. But I think hopefully after the October meeting we will have a better idea of what you wanted.
CHAIRMAN IEZZONI: And if people feel uncomfortable with the responses of the Westat folks in October, we should maybe go into, I don't know whether we can go into an executive session to discuss something like that, I don't know whether that's allowed, Marjorie, under the FACA rules, but if we decide as a group that we are dissatisfied with how Westat has responded to us, I think that we should have the opportunity to think about whether, through the mechanisms that you all have available to you for expeditiously finding contractors, whether there might be some other options that are feasible cost wise. The first person we talked to was not feasible cost-wise at all.
PAUL NEWACHECK: Lisa, essentially part of the reason for going with Westat was because of this existing contract and the knowledge base that that may have generated.
CHAIRMAN IEZZONI: Right.
PAUL NEWACHECK: So what else are they doing besides reviewing the functional status measures that now exist?
CHAIRMAN IEZZONI: They are going to be having an NHANES-like van that is going to go around the country, and they are actually going to interview a lot of people. The purpose of their project is to look at what would be the estimates of who might be eligible for Social Security Disability Insurance if these new approaches toward identifying disability were used. And so they are not just going to be evaluating function of people without--with disabilities, they are also going to be looking at people who are not self-identified as disabled to see what the population estimates would be. Because we have no way of knowing how many people are out there right now who could be eligible for SSDI but aren't applying for it. So they are doing this huge--I mean it's millions and millions of dollars, what they're doing. Dale?
DALE HITCHCOCK: Yes, I would just mention, Paul, that a couple of years ago ASPI put out this bid for what we called an umbrella task work on several areas. One of them was disability and long-term care. Westat and two or three other contractors bid on this, were evaluated, and the major work that they have done in the past, Westat and others, were selected to be part of the pool that ASPI could draw upon, and other agencies, too, and the NCVHS, to do task orders. There are a number of areas, and one of them is disability and long-term care.
VINCENT MOR: So they're not actually, under this contract, addressing the fundamental issue that is confronting Social Security of how to actually redesign the disability determination process that is currently in place with the interface of doctors and Social Security Administration--
CHAIRMAN IEZZONI: Yes. Yes.
VINCENT MOR: Yes?
CHAIRMAN IEZZONI: I think that that was part of it, too.
VINCENT MOR: I mean, because that has nothing to do with going out and finding out--
CHAIRMAN IEZZONI: It's a huge-- It's like an octopus.
VINCENT MOR: So it just keeps going.
CHAIRMAN IEZZONI: It's huge.
VINCENT MOR: Because the issue of how Social Security takes information from doctors, goes through whatever process they go through--
CHAIRMAN IEZZONI: Yes.
VINCENT MOR: --to decide, oh, yes, you've got it, or no, you don't, and adjudicate it through some formal--is actually not-- it's a reasonable paradigm for thinking about quote, unquote, "administrative data."
CHAIRMAN IEZZONI: I think that there are some limits on what they are able to do because of the statutes around how Social Security is administered, but my understanding was that this Westat project is all inclusive.
BARBARA STARFIELD: Was what?
CHAIRMAN IEZZONI: All inclusive around Social Security redesign. It is huge.
VINCENT MOR: So there would be somebody on that team who knows--
CHAIRMAN IEZZONI: Right
VINCENT MOR: --in substantial detail the variability of the disability determination process, both historically and geographically, because that's a key issue in thinking about--
CHAIRMAN IEZZONI: Yes.
VINCENT MOR: --are you 2047, or some measure.
BARBARA STARFIELD: And which attorney do you get, too.
VINCENT MOR: Right.
DALE HITCHCOCK: And my point about the contract was that they have obviously done enough work--
CHAIRMAN IEZZONI: Right.
DALE HITCHCOCK: --in this area besides the survey--
CHAIRMAN IEZZONI: Yes, they're doing--
DALE HITCHCOCK: --make them qualified.
CHAIRMAN IEZZONI: This would not be an add-on to their Social Security work. This would be work for NCVHS which is specific to what we want. So we probably--we may or may not have the people that are the leaders in their SSA project involved with us. They probably would be involved in negotiating the contract, but exactly who the staff would be from Westat who would work with us is unclear at this point.
PAUL NEWACHECK: We wouldn't just get the SSA stuff they're doing regurgitated back to us.
CHAIRMAN IEZZONI: I would hope not.
ELIZABETH WARD: Working with the other subcommittees--
CHAIRMAN IEZZONI: Yes.
ELIZABETH WARD: --would we ask that the confidentiality committees co-convene the October meeting so that we have them up front hearing from the customers? Because--
CHAIRMAN IEZZONI: You know, I e-mailed both Simon and Kathleen, as I said earlier. Kathleen's e-mail bounced back to me, even though I had the correct address. Kathleen's e-mail bounced back to me, even though I had the correct address, and it may have ultimately gotten delivered. You know how when things bounce back they try to redeliver it a whole bunch of times, but I never heard from her.
MARJORIE GREENBERG: And I would have to say, obviously I just participated in the Privacy and Confidentiality meeting this morning, but I did participate in the Standards, you know, sat in on the Standards one yesterday, and there was absolutely no discussion of this activity.
CHAIRMAN IEZZONI: Well Simon cannot make the October meeting. He and I have corresponded by e-mail about this. My feeling would be that the privacy subcommittee will be absolutely crucial to co-convene when we hear from people in the field, especially. You know, the advocacy groups and so on.
ELIZABETH WARD: But if we bring them in two or three meetings down the road, it seems to me we will be back in the position of defending why we are going there rather than having known from the beginning where we're going.
CHAIRMAN IEZZONI: Again, I have tried to e-mail Kathleen. I haven't heard from her. I e-mailed Simon. I don't know, Marjorie, at this point what--is Kathleen here today?
ELIZABETH WARD: She's here. She's next door.
MARJORIE GREENBERG: I assume she's here.
ELIZABETH WARD: She's here.
CHAIRMAN IEZZONI: She's here. She's next door. Okay.
MARJORIE GREENBERG: Who was in there? Somebody was in there.
BARBARA STARFIELD: Kathleen was chairing the meeting. I looked in.
MARJORIE GREENBERG: Oh. Okay.
CHAIRMAN IEZZONI: Okay, because she wasn't here yesterday. I talked to Simon yesterday.
MARJORIE GREENBERG: And at minimum, when you present to the subcommittee today, you could--
CHAIRMAN IEZZONI: We can bring it up.
MARJORIE GREENBERG: --explicitly make that request.
CHAIRMAN IEZZONI: Okay.
BARBARA STARFIELD: Lisa, as you know, I can't be there at the October meeting, but one of the users is the people--so we need to get someone from--
CHAIRMAN IEZZONI: Healthy People from Healthy People, yes. Okay. That's true.
DALE HITCHCOCK: We have WBS--
CHAIRMAN IEZZONI: Well we need to get somebody with exactly what they want to know. It would be good to actually have pages photocopied from the Healthy People 2010 around the functioning questions to disseminate to the subcommittee beforehand.
I mean, we all remember seeing it awhile ago, but it may have been revised based on public comment. So we should try to get copies of that before the October meeting. That's a good point. We should also maybe see whether there are any consumer advocacy groups that we might want to hear from in October, because it may be that there are people out there in the community who feel strongly that their views are not represented adequately because there just isn't information about that. And so I'm not sure exactly how to go about that, you know, the Consortium for Citizens With Disabilities, or--you know, again, the problem with the advocacy groups is that it is more disability-centric. If people have other suggestions--
DALE HITCHCOCK: What's wrong with having somebody from the Department talk about the current political climate the Department is in with some of these advocacy groups. I don't know that much about it, but I know that we've prepared--at times people have come in and chained their wheelchairs to the doors and the fences, and there's--
CHAIRMAN IEZZONI: Well we don't want to have this project start out with that, because it would marginalize it, I think.
DALE HITCHCOCK: I wonder if there is anything we should know that we don't know about the political situation before we plunge in. I don't know.
CHAIRMAN IEZZONI: I would like to hear from people directly when go out into the field. You know, and if we hear from people that they object so strongly about this, even if there is a compelling business case or if there is compelling public health case, then we need to reflect those views. You know, just indicate that that is what we heard from the field. But we need to also indicate who we heard it from, so we have to have a full range of people that we hear from.
MARJORIE GREENBERG: I have another question. How about some of the CIDHS groups or liaison with the disability community--
CHAIRMAN IEZZONI: Well we have Gretchen Swanson on our list. She spoke to us out in San Francisco a number of years ago.
MARJORIE GREENBERG: But I was thinking of some of the disability groups that they've worked with. I mean I know there is an international group that's been very active, but are there some in the U.S. as well?
CHAIRMAN IEZZONI: So do people have other suggestions for who we should hear from, specific names? Paul? Barbara? Around pediatrics, Kathy? Around quality--
KATHRYN COLTIN: I have some names.
CHAIRMAN IEZZONI: Yes. Kathy has some names. Paul might have some names, and Barbara might have some names about pediatrics. Jerry, can we make sure that we get Kathy's names written down?
KATHRYN COLTIN: Well I think from the Risk Adjustment payment perspective on the health plan side I would suggest Dick Anderson from Keyser.
MARJORIE GREENBERG: Is the person who came out and presented on Risk Adjustment at the panel that we had?
KATHRYN COLTIN: I think he might have been.
MARJORIE GREENBERG: You think he might have been?
KATHRYN COLTIN: Yes. There is someone at HCFA who has been working on this, and I'll have to go back to my minutes of meetings, but when they were developing the health of seniors measure, which is portrayed as a quality measure, but there was a group of HCFA that wanted to have specific questions from the Medicare beneficiaries, current beneficiaries survey, incorporated into it to use for looking at functional status and health plans overall, as opposed to looking at change scores from a quality perspective, because they were factoring that kind of information into some of their payment types of research--you know, what they were doing to try to look at how they could do a better job of setting payments to account for functional status. So they put in questions about ADLs and IADLs and so forth in the Health of Seniors Survey, even though they are not being used to construct a measure. They were put in there for a totally different purpose. And I think the folks who did that--
CHAIRMAN IEZZONI: Would be good to hear from.
KATHRYN COLTIN: --would be good to hear from, those who advocated for that.
STANLEY EDINGER: That's Steve Klausner's group.
CHAIRMAN IEZZONI: Steve Klauser's group. So it would be the Quality side of the house.
KATHRYN COLTIN: It might be. My understanding is there were the people there from HCFA who were from the Quality side, and then there was this other group that was working on payment, and Jeff was trying to accommodate their needs as well. So I'm not sure they were all from the Quality Group. And I can get names, because I have documents from who was there. But I just don't recall.
Someone else you might want to talk with or invite is Nancy Whitelaw. She's been a user of these kinds of measures at Henry Ford Health System and she is going to NCOA.
CHAIRMAN IEZZONI: NCOA?
KATHRYN COLTIN: National Council on Older--
VINCENT MOR: National Council on Aging. She's very good. I was going to suggest--
CHAIRMAN IEZZONI: Oh, that sounds great.
VINCENT MOR: I was going to suggest, actually, Nancy as well because she's been very active in a group called National Chronic Care Consortium trying to address the issues of measure interface across different units serving the same person--
CHAIRMAN IEZZONI: Oh, great.
VINCENT MOR: --with an integrated delivery system.
CHAIRMAN IEZZONI: Well she sounds essential.
BARBARA STARFIELD: What was her last name?
VINCENT MOR: Whitelaw.
KATHRYN COLTIN: Then there's--I have to check this name, because it's been a few years, but there was a fellow named Richard Victor, who was the director of a group called The Workers Compensation Research Institute, which is based in Cambridge, actually, and they do a lot of work with major workers comp payers, and it seems to me this is a big issue around workers comp, that they might be a major customer for a functional status measure. Julie Sanderson Austin, who is I believe with the American Group Practice Association, AGPA, and they have, in a lot of the medical groups around the country that are members, used functional status measures as part of health outcomes measures like on patients who had hip replacement surgery and others to look at the--from a quality of care perspective.
CHAIRMAN IEZZONI: Great.
KATHRYN COLTIN: So she would be a good one to hear from.Beth Maglenn at Rand. I know she hasworked with the Medical Outcomes Study, but also in depression. She's had a major grant and look at depression and looked at functional status, I believe, in that grant. You mentioned Steve Klauser already. Those are probably the names that come off the top of my head.
CHAIRMAN IEZZONI: Those are excellent suggestions.
KATHRYN COLTIN: I also would talk to somebody like Gene Nelson, or others at Dartmouth--
CHAIRMAN IEZZONI: Gene Nelson, Paul Betolven--
KATHRYN COLTIN: --because they've developed those Co-Op Charts, and I think they were using them in some of the physician practices.
CHAIRMAN IEZZONI: John Lawson.
BARBARA STARFIELD: But they are instrument developers. I don't think they should be in--
KATHRYN COLTIN: But they have used them in a number of physician practices there in their co- operatives, and there might be people who have used them who would be willing to testify.
BARBARA STARFIELD: Well any instrument--
KATHRYN COLTIN: --we were a site--
BARBARA STARFIELD: Any instrument developer is a user, yes.
KATHRYN COLTIN: No, no. But I'm talking about the reaction of the groups they tested it in.
BARBARA STARFIELD: That's fine. That's great. But you wouldn't get that from the developer.
KATHRYN COLTIN: We had nothing to do with the development. We just agreed to be a pilot site to use it.
(Multiple speakers at once.)
KATHRYN COLTIN: --several years ago, and I'm not sure how salient an issue it would be.
CHAIRMAN IEZZONI: But is it being used any more?
KATHRYN COLTIN: No.
CHAIRMAN IEZZONI: Okay, that's an answer.
BARBARA STARFIELD: I mean the testifier should be the user, not the developer, because we'll have a whole hearing on--
KATHRYN COLTIN: That is exactly what I was suggesting. I said, talk to Gene Nelson about who has actually used it in their network.
VINCENT MOR: You may also want to talk to Chad Bolt about who is using his little screening device--
CHAIRMAN IEZZONI: Yes, for the risk factors.
VINCENT MOR: --for the risk factor thing, because I think there are some large groups that are using it.
CHAIRMAN IEZZONI: There are, yes.
VINCENT MOR: So, you know, as another possibility.
CHAIRMAN IEZZONI: Now, Marjorie, before we get to Paul and Barbara about pediatrics, this does raise the issue, because people like Chad Bolt are academics, and it raises the issue of travel money for--
VINCENT MOR: You may not need to ask Chad, but there may be other folks who are working with his thing, I think, because I mean he's a developer I agree.
CHAIRMAN IEZZONI: The health plans, yes.
VINCENT MOR: He's a developer, and he's done a lot of testing, and so on and so forth, but I think there are folks who are actually using it, too.
CHAIRMAN IEZZONI: So asking him about who some of the health plans are--
VINCENT MOR: Yes, that is what I had suggested.
CHAIRMAN IEZZONI: --and what their experience has been. Okay, Paul, do you have any thoughts on the kids side?
PAUL NEWACHECK: Well, in thinking about it, it is a little more complicated of an issue with kids in the sense that I think the conceptions that are being developed in the field of children's health are broader than functional status. That is, the way the field is moving and the way people think about children with chronic conditions. The notion is really thinking about special health care needs, and that goes beyond functional status to include people who can function well but need some kind of assistance in order to maintain that. So it is sort of looking at elevated service needs, as well as functional status. Functional status is maybe a quarter or a third of the kids--that is, kids of who functional status problems are a quarter or a third of the population that major service delivery agencies are concerned about. There are other kids of who have these ervices needs but don't necessarily have functional problems, and they are all locked together in this sort of non-categorical way of thinking about kids. So there isn't really a constituency that's focused strictly on functional status. It's really I think broader than that. I don't know, Barbara, if you would agree with me, but it is--
BARBARA STARFIELD: I do agree.
PAUL NEWACHECK: --has moved away from this narrow notion of functional status to being much broader in conceptualization. So I think it's going to be a little trickier to integrate this into our discussion.
CHAIRMAN IEZZONI: Well help me understand what you mean by that. Because I'm trying to define functional status very broadly, including developmental delay. It probably would include that. It would include, you know, mental retardation. It would include--
PAUL NEWACHECK: Yes, this would include all that, too--
CHAIRMAN IEZZONI: Yes. And so that's--
PAUL NEWACHECK: But it might include the definition, for example, of material child health care users for children's special health care needs is based on a notion of elevated service needs beyond those that most children would need. That is, either additional routine type services, like physician services that are beyond the average that kids might need, or use of specialized services that most kids don't use. And the population estimate would be around 15 to 20 percent of kids would fit that definition. And maybe a third of those kids would have a functional limitation based on--
CHAIRMAN IEZZONI: But what would the other children have that would require them to have those special services?
PAUL NEWACHECK: Let's say just, you know, something like asthma that would require sort of routine visits that are above normal but not necessarily causing a limitation in their activities.
CHAIRMAN IEZZONI: I see.
PAUL NEWACHECK: So it is sort of getting the--it is a broader conceptualization of the population than based purely on function alone. And that is where the field is kind of moving at this point. So it is going to be a little trickier to integrate what is happening with children into this project because of that.
BARBARA STARFIELD: And at the same time, there is a movement to describe functioning of a population of children, because there is tremendousvariability even within the group that doesn't have to find special health care needs. It gets back to, you know, what are we after? Are we after just a group that requires extra resources that might be paid for publicly or privately? Or are we after describing what the needs are in the population, which is different. So there are both, and they don't meet very well.
PAUL NEWACHECK: That's not to say we still don't need better measure of functional status, and we'd like to have them. It's just that that's kind of become one smaller element of a broader agenda for kids.
CHAIRMAN IEZZONI: Well who can we hear from who will help us think about those issues for people who need to know about why children have special needs?
PAUL NEWACHECK: Well I think having somebody from the Maternal/Child Health Care would be useful. That might be--
CHAIRMAN IEZZONI: Okay.
PAUL NEWACHECK: --McPherson who runs the Division of Children's Special Health Care Needs.
CHAIRMAN IEZZONI: Are those names that are familiar to you, Susan and Jerry?
PAUL NEWACHECK: Jerry knows, yes. And the Social Security Administration is now reconsidering its way of categorizing kids who have SSI, or their eligibility for SSI, and they're developing a brand-new survey with Mathematica or policy research around the same topic. So they have been actively focusing on reconceptualizing that population. So it would be good to have somebody from there, too.
CHAIRMAN IEZZONI: Well maybe we could hear from Mathematica.PAUL NEWACHECK: Yes. Maggie Callahan is the Project Director for that.
KATHRYN COLTIN: I know there is a pediatrician in the Boston area who has done some consulting with Maternal and Child Health and has a lot of special needs' type children in his practice, so I know he advocates a lot for this. And of course he is under capitation. He might be someone.
CHAIRMAN IEZZONI: Who is that?
KATHRYN COLTIN: Peter Rappo.
CHAIRMAN IEZZONI: Peter Rappo?
BARBARA STARFIELD: Peter Rappo?
CHAIRMAN IEZZONI: Do you know Peter?
PAUL NEWACHECK: Um-hmm. Yes. Jim Perrin is another who is in the Boston area who has spent a long time thinking about these issues. I guess it sort of depends if we're really talking about sort of "customers" for sort of functional status, I would think of these main federal agencies and maybe the Family Voices, which is an advocacy group--
CHAIRMAN IEZZONI: Family Voices.
PAUL NEWACHECK: --to get their perspective.
CHAIRMAN IEZZONI: That's a good idea.
PAUL NEWACHECK: I think Peter Rappo would be good in the sense of providing the sort of pediatrician/practitioner perspective.
KATHRYN COLTIN: Well he is always saying, you know, you should adjust the capitation to account for these kinds of things in the populations.
PAUL NEWACHECK: Right.
KATHRYN COLTIN: He spends most of his time in practice, as opposed to being a researcher.
PAUL NEWACHECK: He's also closely involved in the American Academy of Pediatrics and can bring in that perspective, as well.
CHAIRMAN IEZZONI: Okay. So, Marjorie, what we are hearing is a mix of people, some of whom may need some travel paid for. So you need to make sure that we don't break the bank, and that we behave like responsible NCPHS citizens.
MARJORIE GREENBERG: Well, I think it could be somewhat problematic to have to pay for three or four for a given meeting, but I guess, you know, we can identify out of this group who is available and then we may have to prioritize, or try to find someone more local. But I mean I think we can think in terms of, obviously, paying for several.
CHAIRMAN IEZZONI: Okay.
BARBARA STARFIELD: I think Bob Greenberg, who is the new head of the Advisory Board of the Children's Health Research Institute, or something. It's sort of an offshoot of the Academy of Pediatrics, might be useful, or Michael Weitzman who actually heads that and gives a broader perspective on functional construction. Bob Greenberg and Michael Weitzman.
CHAIRMAN IEZZONI: And, Barbara and Paul, can you help us think about how to frame the questions for these people when they come? Because I think Kathy and I and the rest of the committee will feel more comfortable framing the questions around more adult focus, but because, Paul and Susan, we are going to have to give these people questions to respond to--you know, Paul, Jerry--Jerry's leaving--
PAUL NEWACHECK: He was insulted and he left.
(Laughter.)
CHAIRMAN IEZZONI: I guess so. Poor Jerry.
BARBARA STARFIELD: How about Runa Simmonson?
PAUL NEWACHECK: Yes. He'd be another interesting--
CHAIRMAN IEZZONI: Who is that?
PAUL NEWACHECK: Dan Lawler is interested in this issue for kids, as well.
CHAIRMAN IEZZONI: Don Lawler?
PAUL NEWACHECK: Yes.
CHAIRMAN IEZZONI: Yes, he would be.
MARJORIE GREENBERG: If there's an international children's task force around ICIDH that Runa Simmonson of North Carolina is--
PAUL NEWACHECK: Yes, and Don Lawler.
MARJORIE GREENBERG: Yes, obviously Don Lawler.
PAUL NEWACHECK: Yes. Both of them.
CHAIRMAN IEZZONI: We should actually see whether Don Lawler could come to this meeting. Okay, Vince?
VINCENT MOR: I hesitate to mention this, but there is one industry that is using functional data a lot--
CHAIRMAN IEZZONI: Yes, and can we guess which that is?
VINCENT MOR: It's not just the nursing home industry, but it's also assisted living. Whereas in the nursing home industry it has been opposed, in the assisted living industry it's actually been voluntarily adopted in certainly my area. So you may want to talk to folks there.
CHAIRMAN IEZZONI: Who?
VINCENT MOR: There's one person I know who is a CEO of a company who runs--she's on the Institute of Medicine Panel on Quality--Karen Wilson. She's out in Oregon. She's the CEO of a company that owns like a number of, hundreds of assisted living facilities. I am not sure whether they collect the stuff, but I know that they have contemplated it. I think in some of their units they do. I just know, you know, how they're using it and why they're using it.
CHAIRMAN IEZZONI: Okay. All right, well, Marjorie, does the Full Committee reconvene at 10:30?
MARJORIE GREENBERG: 10:15.
CHAIRMAN IEZZONI: 10:15. I just looked at my watch. I was afraid of that.
MARJORIE GREENBERG: That's why I'm starting to fiddle.
CHAIRMAN IEZZONI: It is 5 after 10:00. Thank you. This has been very helpful. Paul, will you be able to come to the October meeting, do you think, maybe?
PAUL NEWACHECK: Maybe.
CHAIRMAN IEZZONI: Maybe. Because Barbara can't come, and it would be--well, we would miss not having a pediatric perspective there. All right, folks, thank you very much for all this useful input. Great. Thank you.
(Whereupon, at 10:05 a.m., Tuesday, September 28, 1999, the subcommittee meeting was adjourned.)