Hubert H. Humphrey Building
Room 303A-339A
200
Independence Avenue, S.W.
Washington, D.C.
Dr. Lisa Iezzoni, Chair
Michele Adler
Pat Golden
Dr. Olivia
Carter-Pokras
Jason Goldwater
Carolyn Rimes
Update on Census Disability Questions
Discussion of the Status and Plans for Subcommittee
Meeting on the Pacific Islands, Puerto Rico; and Data Collection Issues
Update on the Status of OMB Directive 15
Discussion of Task Order, State Specific Options, and Schedule for Medicaid Managed Care Study
HCFA's Efforts to Collect Post Acute Information and Update on the OASIS
PARTICIPANT: Because of Pat's schedule, we're going to change our schedule a little bit. When Michele Adler comes, since she is coming out of the office, we will meet with her immediately. But then we will move Pat up after that.
Vince would like us to spend a minute talking about the unique patient identifier. That might be something, Elizabeth, that you were going downstairs to hear that discussion, so maybe if we have a little bit of discussion before you leave on that, that might be helpful to you.
Then we will hear from Harlan about HCFA's efforts on the post acute care. Then we will see what the story is with Olivia on the update on the directive 15.
PARTICIPANT: I thought maybe we could do some of it, and we do have handouts.
PARTICIPANT: Well, we should check, because -- I think to have Pat do it, and Olivia was going to show up.
PARTICIPANT: Well, Olivia is not going to be here.
PARTICIPANT: Oh, Olivia is not going to be here, okay.
PARTICIPANT: At least, that was the --
PARTICIPANT: That was the e-mail I got.
PARTICIPANT: Now, what I could do is, while we're waiting for Michele, --
PARTICIPANT: Well, Michele is here, as we speak.
PARTICIPANT: Then let me just say that the final item is actually the contract that we are going to let for the Medicaid managed care project. We need to decide where we want to do our site visits. So Elizabeth, you might want to weigh in a little bit on that, and hopefully you will be able to give us a little bit of input from having talked to some of the potential contractors, right, Carolyn?
So that is the item of business that we absolutely have to get completed today, because we need to start contacting folks at the places where we are going to do this.
Now, I guess George van Amberg is gone.
PARTICIPANT: No, you mean, off the committee?
PARTICIPANT: Yes.
PARTICIPANT: No, he is still on the committee, he hasn't been replaced.
PARTICIPANT: But he couldn't come to this meeting.
PARTICIPANT: He hasn't been replaced?
PARTICIPANT: No.
PARTICIPANT: He will be.
PARTICIPANT: But right now, he is still a member of the committee.
PARTICIPANT: Oh, okay, so the three new approach are not replacing George van Amberg.
PARTICIPANT: We don't need Congressional approval. Is that the problem? We know that Congressional approval is impossible these days, but --
PARTICIPANT: Right. Don, do you have any sense of whether any of the three new members will be joining our subcommittee?
PARTICIPANT: Well, I think the other issue probably also comes down to how we are going to relate to this quality question as well. So I think that is part of the debate as well. But certainly I think at this point no new people are assigned to anything.
PARTICIPANT: Okay. Great. Let's just go around the table then for the record and the tape knows who is here. I'll start. I'm Lisa Iezzoni from Beth Israel Deaconess Medical Center in Boston.
DR. MOR: Vincent Mor from Brown University.
PARTICIPANT: (Words lost) from Boston University.
DR. ADLER: Michele Adler from ASPE in HHS.
DR. DETMER: Don Detmer from the University of Virginia.
MR. GOLDWATER: Jason Goldwater from NCHS.
DR. WARD: Elizabeth Ward from Washington State Department of Health.
DR. GOLDEN: Pat Golden, NCHS.
MS. RIMES: Carolyn Rimes, HCFA.
PARTICIPANT: (Comments off mike.)
DR. HITCHCOCK: Bill Hitchcock, ASPE.
DR. NEWMAN: Mike Newman, Health Resources and Services Administration.
DR. SCHWARTZ: Harvey Schwartz, AHCPR.
DR. BURKE: John Burke, HCFA.
PARTICIPANT: (Comments off mike.)
DR. IEZZONI: Okay. Michele, thank you for coming. We are all very curious to find out what the results were of that interesting pilot test that you described to us in the first week in September.
DR. ADLER: I remember some of you from the last meeting. This is like a soap opera, so I will recap for those of you who missed last week's.
PARTICIPANT: We can't read it in Soap Opera Weekly or Digest?
It was actually almost that Byzantine. But I was here on September 8 -- it doesn't seem that long ago -- to talk about the -- there were two versions of disability questions that were being tested in the census cognitive lab to be put on the decennial census. The decennial census is scheduled to have a dress rehearsal this April, April of'98.
They have a large number of budgetary problems relating to Congress. For one thing, their continuing resolution hasn't passed, like many departments, but the Census Bureau wants to use a sampling method to find out non-respondents. If you have been reading the papers the last few months, there are many Congressmen who are averse to that. So there are many things going on.
But the latest I have heard is that the dress rehearsal is still scheduled for spring. I did get a month out of them, April. It will be in Columbia, South Carolina, and someplace in the Midwest. It might be Columbus, Ohio or Columbus, South Carolina and Columbia, I don't know. But part of the funds for the dress rehearsal have to do with the sampling, so depending on what happens with Congress, we will see that.
So that is the main plot. Within that, on disability, on this handout that I handed out, on the second page, you can see that starting in 1970, there were some questions on disability, mainly only having to do with work. Then in 1980, to the work question, we had something added on public transportation.
I'm sorry, I forgot to put the '90 questions; I brought them last time. But in 1990, we had the work disability question plus a proxy for ADLs and a proxy for IADLs. So taken together, we can get long-term care estimates.
The rules for anything being on the decennial census are that they have to have some basis in statute. The best thing is if they are directly used in apportionment for the decennial census. Next to that in priority is that there is a statutory use, for example, revenue sharing has to have local estimates in order to get out the money, or if there is a program need. So you just can't put anything you want to in the decennial census. It also has to be needed at local levels, and of course it can't be found elsewhere very easily.
Those are the general rules. And then it has to be accepted by the Census Bureau and accepted by OMB.
Then we have rules for the disability questions that we were proposing this time. The rules were that Congress had -- I don't know how this came about or when it came about, but everyone assured me that we were absolutely limited to no more than six items.
Of course, the decennial census is a mail questionnaire and a mail-back questionnaire, which basically means it has to be understandable by just about anybody in the country, talking about a reading level of third or fourth grade.
In the disability community, our own goals, we wanted to identify people with disabilities and we wanted to have something on disability and work. The Census Bureau had proposed a set of questions earlier this year, which we didn't think were -- didn't go far enough. They were certainly better than '70 and '90, but they did not include children, they didn't include much on work, and they didn't have our long-term care measures.
So when last I came, we had spent the summer -- by we, I mean the Census Bureau asking NCHS, the Department of Education, NIA, the VA and the National Council on Disability and the President's Committee on the Employment of People with Disabilities, and anybody else who wanted to join in, we had spent the summer at OMB, meeting two or three times a week, where we had to get a set of questions.
The last two pages are the Census version, the next to last page in what we call the OMB version for cognitive testing. The results of the cognitive test were that they --
PARTICIPANT: Can you again describe, Michele, how many people were tested, who had cognitive testing?
DR. ADLER: We had 20. We had 10 on one version and 10 on the other. We asked them about their families, and we picked the people from disability societies. For example, I observed interviews from the Multiple Sclerosis Society of Washington.
The cognitive test was done -- since it was a mail questionnaire, we had them -- this isn't the final formatted version, but it looks something like this. We had the person fill it out. Whenever they filled out a box, they would describe what they were thinking while I am filling this box out, because I am not this, that or the other. Then the person from the cognitive lab would ask them many, many questions, what do you mean by this, what do you mean by that, and so on and so forth.
I thought it was pretty good. We had Terry DeMaio from the Census Bureau, who was one of the best persons in the cognitive lab. It was a very complete test. We found out quite a bit, like you always do when you observe interviews and you see a real-life situation.
Since we only had six items to describe all of disability, one approach which was brought up was that we could pick the most common disabilities, and that way we would come up with a big number. Well, let's pick bad back. This is the one on bad backs. Then you would pick out something on cognitive impairments or something on climbing stairs.
The problem with that is that you would probably end up with a lot of elderly people with disabilities, but you certainly wouldn't get children. So the challenge was to look at disability, and as you will see by looking at the first page, we have an item on sensory impairments and disabilities. The question that we had was, does this person have any trouble, hear, see, paren, with glasses, or talk.
In a real life situation, that did not work. We found out that when we had see, paren, with glasses, they thought it meant see with glasses, and there was no way we could convince people that that is what we really meant.
In fact, one of the purposes of cognitive testing is to find out what the respondents think they answer. If it was the same thing that you think you are asking, that's good. If it is not, then you better make some adjustments.
So that is now, does this person have any of the following, blindness, deafness or severe vision or hearing impairment. The Census Bureau has separated those two items into blindness only, vision impairment and deafness and hearing impairment. We combined those. We didn't want to do it, but we did it because we are limited to six items.
PARTICIPANT: Is impairment a word that is at the sixth grade reading level?
DR. ADLER: Probably blindness and deafness are, and the people that listed their vision and hearing impairments will know what that means. We tried seeing trouble, hearing trouble, and again, that got to be so complicated, with or without glasses, with or without hearing aid in the next room.
When NCHS asked about vision impairments, they asked, with glasses or contact lenses can you read a newspaper, and for hearing, with the hearing aid and without the hearing aid can you hear a normal conversation. And then it is the right ear or the left ear. But we didn't have the luxury of that, so there were a lot of things we had to squeeze in to items that would be understood by the most people.
DR. GOLDEN: Were there any technical definitions that were in place for any of these items, such as impairment, that were used in the past, that would have to be adjusted to what you were collecting here, either in documentation or otherwise?
DR. ADLER: No, that is one of the troubles. Even people who work on disability, who analyze disability for a living, frequently get the words disability, handicap, impairment, trouble, condition all mixed up and use them interchangeably.
DR. SCHWARTZ: May I ask a question? Did anyone suggest in the past, instead of using the word impairment, use problem or difficult? I would think that more people would understand that, even though it is maybe not as technically correct. Why isn't that used?
DR. ADLER: It was because, if we had a hearing problem --
DR. SCHWARTZ: Or difficult.
DR. ADLER: -- or a hearing difficult, then we would have to add lines about with and without the hearing aid, to make it understandable.
DR. SCHWARTZ: But with impairment, you don't have to?
DR. ADLER: Yes.
DR. SCHWARTZ: And the reason for that is? I don't understand why.
DR. ADLER: If you have a hearing problem or a seeing problem, we have people with seeing problems, like, I have a seeing problem if I take my glasses off. So then you have to say, we don't mean that, we mean with the glasses. Well, do you mean the glasses or the prescription? It goes on and on and on. So the people did not understand that.
PARTICIPANT: You attempted cognitive testing specifically?
DR. ADLER: Yes, we did. In fact, we did have some blind respondents. We would have needed the space for the whole -- all of our allotted space to explain that.
DR. HITCHCOCK: Can I ask a question? Was any thought given to the languages that the questionnaire was going to be translated in -- Spanish would be one -- when you were choosing the words that you were using in the English version? Sometimes you have to work to get the conceptual equivalents. It is not always straightforward.
DR. ADLER: Actually, in the field of disability, it is easier to understand in other languages besides English. But the Census Bureau routinely -- not translates; I think they have guides in 243 languages or something like that, a huge number of languages. This time, they are making a real attempt to make sure that the questionnaire is accessible, meaning that it will be in Braille or have sign language interpreters whenever necessary. But we are mainly focused on English.
The decennial census is a format -- unlike many of our others, this is a format driven exercise. It is not a content driven exercise, which is hard to understand. Usually it is like, this is what I want to find out intellectually, and this is where I'm going. You have one and three-quarters inches this time, and you had one and a half inches last time, and you should be very thankful, instead of whining, and fit it in.
But the whole sensory aspect is needed for disability. We tried to have the concept of communication disorders in here. It just did not work.
We tried the word talk, and then we found out that people with severe speech disorders took that to mean, could they talk at all. If you have a six month old baby and he says da-da, you say the baby can talk. So there was that interpretation.
Then we tried communicating, and that didn't work, either. It is a high-falutin' word. Then people with hearing impairments who sign, they do communicate. Just because we don't understand them doesn't mean that they don't communicate.
So we tried all kinds of things, and they didn't work. We just don't have it in here.
Question 16B is about physical impairments, walking, climbing stairs, reaching and lifting and carrying. There was some concern. An earlier census version had one question on climbing stairs and another one on walking three blocks. There was concern that people wouldn't understand, can you lift 10 pounds or walk three blocks. We found out happily that people do understand the word or. We kept saying, what do you think we mean, and they would say, we think you mean this, or this. So that was good news. We found that people could understand the word or.
Once we got that under way, we crammed -- these are basically the NAGI items for different body types, different body systems. Climbing stairs is a knee thing, reaching is a shoulder thing, lifting is a back thing.
DR. MILLMAN: This doesn't allow you to separate out the specific disabilities. Like, the blindness community is very different than the deafness community.
DR. ADLER: Well, that was another thing. The whole purpose for this exercise was to get state, county, NSA, local level data. There aren't that many people with blindness or severe visual impairments. There are about four or five million, and there are 10 or 12 million -- don't hold me on these numbers -- for deafness or hearing impairments. When you get it down to local levels, it wasn't --
DR. MILLMAN: But if you are trying to plan services or something, you may not please anybody, as opposed to some people.
DR. ADLER: Right, but the Department of Transportation, in looking at local transportation authorities, trying to design buses, they are looking at aspects of disabilities, so we have a sensory and a physical.
Then in question 17, learn, remember or concentrate is a cognitive aspect of disability. That was the thing we faced. We knew that you really have to go function by function. In the disability survey we could do that, and we have 300 or 400 items. We did try that with the Census Bureau, but they laughed at us.
DR. AMARO: I have a question. I notice that on question 16, defined through the period that the disability limitation should -- how long that should be, on 17 but not on 16.
DR. ADLER: Yes, this is one of those art things. Question 17 is from the OMB version, and it is also from the '90 census, where we had specific limitations, six months or more. That was picked because NCHS likes three months for their chronic conditions and Social Security likes 12 months. So it was kind of in between.
We also used it in '90, but the census version had long-lasting conditions. Their people came out with the term long-lasting conditions. So the test people said, well, we tested long-lasting conditions with blindness, deafness and whatever, and we tested six months or longer with the learning, remembering and concentrating, and we cannot mess with it at this point. That is the art part of it.
PARTICIPANT: Are any of these items statutorily required, Michele, or are they all basically program needs?
DR. ADLER: Well, the Department of Education and NIDR have set statutory requirements. In the Older Americans Act, in this blue book, are some statutory requirements. HCFA has some requirements on funding of SHMOs and I believe on health. There are quite a few statutory program requirements.
PARTICIPANT: And these address those?
DR. ADLER: Right, except for, we got D, work at a job or business, that is really not there. The Americans with Disabilities Act is a civil rights act, so it doesn't have legitimate with it saying you have to get estimates from the decennial census at this point.
DR. AMARO: Michele, can you tell us a little bit about how people in the cognitive interviewing responded to their understanding of mental or emotional conditions? What kind of things did people say? What did they understand it to be?
DR. ADLER: There were people who were confused, and they understood that we were getting at that from the concentrate part. There were people who had people in their family who understood that difficult in learning was what we were after. And there were people on certain medications who realized difficult in remembering, and that was decided. But I think actually it was pretty clear, and we were surprised by that.
DR. AMARO: And they tended to, as they were answering B, C and D, think not only of the physical, but of the mental and emotional, wondering how much people will think of that as the answer to that.
DR. ADLER: In our own department, we used, because of the physical or mental condition, do you whatever. I guess in the last 10 years or so, we have added emotional. That is one thing that we did push very hard for
in this department, to put emotional in, because from our own NCHS labs, we found that if you just have mental, people think of mental retardation, Alzheimer's, they don't think of mental illness, because it has got the word mental in it. But if you put the word emotional in it, you get a much fuller aspect.
Seventeen-B is the ADL question from '90 and '70, the IDL question from '90. Taken together, we used them for long-term care needs. The ADL question was a serious bone of contention with the Census Bureau, because it did not perform well on how they assess questions in a test situation. They had a content re-interview test a couple of years ago, and they had a mail questionnaire, and then two months later they went back and did telephone calls. They asked the same questions again, not necessarily of the same people, and for the ADL question, and the response was very poor. So their solution was to drop the ADL question altogether, and we got them to put it back, basically convincing them that some research done by AHCPR showed that that is like the worst thing you can do, to test ADLs. If you talk with the person with the ADL at one point and then the caregiver at a different point, of course you're going to get a different answer. There is a lot of change going on.
But when you have a sensory or physical, a mental,
an ADL and then an IADL, the first five items identify people with disabilities, and the last one has no statutory justification. We put it in: work at a job or business. We had a work accommodation question that we tried, and it did not work; it was just too long. It was just too long.
So what will happen is that this is on the decennial census, but SEP is going to test different employment accommodation questions, different sets of questions, and look at what we get out of the disability survey and see what it is that we should be asking about.
In the civil rights legislation of 1965, kind of a similar situation, there was nothing in there about needing race data at local levels. But under the Voting Rights Act, to prevent discrimination in voting, they draw polling districts based on the decennial census, and they see that everyone has access to the polls. They really look to see with mountain ranges in between, or a river.
But a similar situation may arise. The ADA civil rights legislation doesn't have any data requirements, but there may be something later on that would require this information at local levels, so that local areas could be targeted for their compliance with the ADA.
DR. IEZZONI: So these have officially been vetted?
DR. ADLER: Yes.
DR. IEZZONI: They are supposed to be joining the test that will be theoretically happening next April?
DR. ADLER: In the dress rehearsal. The purpose of the dress rehearsal is not the content, but the procedures, especially their sampling procedures.
This was a very tight deadline. We met on September 25 in the afternoon to finalize the questions between the results of the cognitive lab and these two versions, and so we met our deadline of 9 o'clock in the morning of September 26 for the census format, and they met their deadline at noon on September 26, and the OMB okayed it on Monday, the following Monday, two days later.
DR. MOR: Which is the fastest OMB has ever responded to anything.
DR. ADLER: Yes, and we called it the OMB version.
DR. GOLDEN: So it never got into the content test then?
DR. ADLER: There was a content test, and something went around to the agencies, and we proposed questions to be put into it, and they had different combinations of questions, I don't know why. That is where they decided that the ADL didn't work, so they just dropped it altogether. Had that happened, we would learn about -- find out the number of people without disabilities, excluding those with the most severe disabilities, which doesn't make a whole lot of sense.
But what we were looking at was trying to fix what came out of the content test. They don't have a final form formatted yet that I could give to you. But the word is, they look real nice. The decennial census is into appearance and format, and it looks real nice. It doesn't look like it was shoe-horned in. It doesn't look like a ransom note, where you take letters from different magazines and glue them in. It looks like it belongs there.
It will have information on children for the first time, and cognitive impairment and many more aspects of disability. This will be put into the American community survey, which will be done every two or three years in order to get state estimates. You should have somebody from the Census Bureau talk to you about that.
But the first American communities survey is going to consist of the decennial long form, so it was very important that we got these questions right, because they were going to appear in a lot of places, be used extensively.
DR. MOR: Will there be any revision possibility based on the spring testing?
DR. ADLER: I don't think so, because it is not a content thing, unless it entirely blows up, which I don't think it will.
DR. MOR: Twenty cases of cognitive testing, the standard for the future. It makes me real nervous.
DR. IEZZONI: Well, Vince, I was a little nervous too, because the cognitive testing was, people selected from specific communities, like you had the MS Society select people. It sounds like you had people from the blind advocacy groups or whatever. So this was never really tested with people who would not self identify as a member of a disabled community. So that is the thing that worries me. I am not convinced about the word impairment.
I hear what you are saying, but I still think that the people who do self identify with the disability advocacy community are going to be more used to a word like that, so you might be getting what you want out of them, but if you identify it from the test, I think --
DR. ADLER: We do have from the content test all of 17 tested. This work at a job or business is an old question that has been around forever. But in the content re-interview test, we've got 17A, B, C. Then 16A and B were there, but some of them were separate.
I don't know, given the constraints we were under, we had gone to -- just picked a random sample of people for the cognitive test, so we wouldn't have found anybody with these disabilities.
DR. IEZZONI: Well, obviously you are under resource and time constraints, right?
DR. GOLDEN: They did that for OMB, remember? They did the targeted test for race and ethnicity, and that was one of the issues that they had to target in order to make sure that they got populations of interest, and they recognize that that limited the generalizability of the issue.
DR. IEZZONI: I think targeting is different than having the MS Society, for example, go in and identify the people.
DR. GOLDEN: But similar. When I say targeted, it was the same general issues with who they chose for that rate.
DR. ADLER: The questions for 2000 are different from '90. The questions in '90 are different than '80 and '70, at least in disability, maybe not in some housing questions or something. So there is a tradition that these are not the same. We are learning more and more about how to identify people with disabilities.
From the disability survey, one of the activities which should take place is that all those questions be matched with each other, and find out which ones work the best. There may be two or three of them --
DR. IEZZONI: You mean from the NHISD?
DR. ADLER: Yes. We have been limited in the past. We have had very few questions in any one place, or we have had questions just for the elderly or just for the working age. But that is the only place where you would have all ages and just about all the questions.
We are way behind in methodological work on disability and health. A recommendation of Nancy Kirkendahl, who headed the OMB group, was that this test that the Census Bureau uses is just not appropriate for disability. There is just too much change, change over time, changing the mode of interview, change in who you talk to, the proxy versus the respondent. It is not like asking, do you have a basement at time one and six weeks later, does your house still have a basement.
DR. MOR: It is also the case that the people who are most likely to say yes are most likely to be those who have some underlying change that will occur, that will either due to somebody else responding or their own condition changing, will -- the unreliability or lack of stability will be precisely in the positives as opposed to the negatives.
DR. ADLER: Right.
DR. IEZZONI: Are there any more questions for Michele? Thank you for your honesty and willingness to share with us work that is in process. It has been very refreshing and enlightening.
DR. ADLER: Oh, dear, I usually get in trouble when people say that. I know you sent me an e-mail, but if there is some statutory or program need for the decennial census, apparently that document isn't needed up on the Hill until January or something. So there still is time if someone has some statutory need for the data. So the more laws we have, regulations we have lined up as to why we need the data, the better chance we'll have of something.
DR. MOR: I just want to echo the issue; the word impairment, keep watching for that. I have seen work well and I have seen it not work well. A lot of framing goes on there.
DR. ADLER: Yes. That one we took from two questions and glued them together, because otherwise we wouldn't have room for the work question. We figured the work question was so important, we had to have it in there. I don't want to say anything against it, because it doesn't have a statutory requirement.
PARTICIPANT: My point earlier was that rarely, you have to change to English to get the Spanish or another language to work, and this might be one of those words. It changes the language totally, because it would be in passive form or something.
DR. IEZZONI: How would you say that, Hortensia?
DR. AMARO: Yes, I was trying to think about impairment. The other choices are a lot easier, or problem or difficult is much more common. But even in English, like with the population that I work with, I don't know that people would understand the word impairment.
DR. ADLER: I know. That is why we lead off with blindness and deafness.
DR. MOR: So it is blind, deaf or severe. That is what people hear, blind, deaf or severe.
DR. ADLER: Yes. Yes, that is the interesting thing about cognitive work, is that we are used to reading things. Most people just read the first few words.
DR. IEZZONI: Great, good, thank you. Thank you very much. Thank you for coming by. We appreciate that.
MS. RIMES: We will recognize it when we see it on the census.
DR. IEZZONI: We will answer it correctly.
(Simultaneous discussion.)
DR. ADLER: The Washington Statistical Society is going to have a session in February, going through all the ins and outs -- it should be pretty lively -- of this whole process. I'll keep you informed on when --
DR. IEZZONI: On the census process?
DR. ADLER: No, on the disability part.
DR. IEZZONI: Why are they having a special session?
DR. ADLER: I don't know.
DR. IEZZONI: A little case study?
DR. ADLER: A little case study, yes. So that should be pretty entertaining.
DR. IEZZONI: Thank you, Michele. The next item on the agenda is Pat and Carolyn, an update on where we are on planning for the December meeting on the territories. So why don't -- Pat, do you want to lead?
DR. GOLDEN: Well, probably. Carolyn might have more to add than I have. I clearly don't have as much progress between our last meeting and now as I had between the first and the second.
The one thing that I guess I can report that we have done, and that is I got something to Jim for the Federal Register notice. I know he told me today that that will go out in about two weeks.
Before we can go further, I think it is going to be important that we decide somewhat on the format and the decision to maybe get a letter that describes exactly what we are going to be doing, and something of a tentative agenda. I have made a number of calls to various agencies, and of course some of them are not familiar either with the committee, and certainly therefore the subcommittee, obviously. I have given them, based on what we have here, a discussion of what we want to get out of it, but they are wanting to have a more formal request before they can either decide on whether they will come or whether they can commit to come.
These are agencies that might be outside of the HHS family. And of course, it will be up to the family to decide whether they want that participation.
We are hamstrung obviously, as I began to contemplate various kinds of formats and the way that we could shape the agenda, by not having a budget to bring in people from the Islands. So I was looking at the need for some balance between federal and non-federal participants, and certainly drawing from people who can actually physically come here.
I think that as I have looked and talked to people, there are a couple of things that we may not have taken into account. I reiterate, there is a structure in the department where pieces of this issue are already being addressed. I think the need to get familiar with that structure would be part of what I would see as an overview.
There are certainly a number of initiatives in the department, where people will have some particular interest, or are maybe already planning to do something. One which comes to mind is the Hispanic agenda for action initiatives. The other is the Asian-Pacific Islander initiative. So again, they may be people that we would want to consider.
There is a lot going on in the Pacific, and probably we have far too many people to speak about what is going on there. We have some things going on in Puerto Rico, and one group that had not considered was the Pan American Health Organization and the department's involvement in that. I have not contacted them yet, but I have again put that down as some place that we would want to consider including.
I have gotten some commitments from some people, including as I mentioned before, Howard Larner. That was in the material that I gave you before, and some indication of his involvement. I have talked to people at the Census Bureau. We have people who have worked there in the Pacific as well as in Puerto Rico.
The Virgin Islands seems to fall in a funny kind of crack, in that there is no initiative that embraces it that is representing the OMB populations per se. So again, a little more work needs to be done to deal with how we can get those issues addressed.
As an aside, I ran across a 1983 report that was done jointly with NCHS and the Census Bureau, and it was looking at the need to develop a health information system in Kingston. However, as I read the report, the issues seemed to be generic and certainly seemed to be illustrative of the infrastructure issues that we will probably run into, so we might --
(End of Tape 1, Side 1.)
DR. IEZZONI: That basically with Hortensia's help sketches out that we would like to have some background beforehand, so we don't have to have people come in to do a huge amount of background presentations. Although certainly, if there is somebody who can come in and summarize it briefly, that would be fine. But I think we are going to want to have a lot in the channel beforehand, so the time that we spend in the meeting can be very much hearing from people who have health related functions and who have actually -- if not on site experience, at least affiliated with agencies that do have.
DR. GOLDEN: Actually, that shifts. There are people who may not have health related experiences, but they have data development experiences. So you want to get a mixture of that kind of thing.
The other thing is still with respect to the letters that have to go out under your signature.
DR. IEZZONI: I would assume so.
DR. GOLDEN: So we need to get a draft of that.
DR. IEZZONI: Certainly I think the memo could draft it. I think our goal -- and you all should stop me if I am saying things that are wrong -- I think our goal is -- you're absolutely right, we don't have a budget for this, so this is a preliminary exploration, and our goal is to learn about issues having to do with health data in the territories, and the role of the federal government in monitoring the health of people in the territories, and basically produce maybe a 10-page report with recommendations based on that.
After that, we might decide that next year it might become a bigger issue for us to think about. But right now, it is at that level.
DR. GOLDEN: Yes. If we can get a handle on what is going on now, I think it will be -- and what has gone on.
DR. IEZZONI: I think, Pat, that Ron Manderschein made quite clear that mental health and SAMHSA has programs on the ground there, too.
DR. GOLDEN: In my mind, I have considered Ron Manderschein in the context of that department and Pacific Island initiative, because he is representing mental health in that capacity. So whereas I don't mention him, he is not the law; he is just included in that activity.
MS. RIMES: When Pat and I had talked, we talked about some panels, setting up some different panels, so that people can actually present based on whatever they have worked on. Ron would be a terrific person. Some of your Census contact people would be good. You can just structure it from there.
DR. IEZZONI: Hortensia, comments?
DR. AMARO: When was our last meeting? Was it the end of September? And it was then that you put that memo together, right?
DR. GOLDEN: The memo was right after the September 5-6 meeting.
DR. MOR: I remember this as the earlier one, the beginning of September.
DR. AMARO: So I'm going to be very honest. I am very concerned about the level of development this has taken. By now, I would expect that -- I certainly sent letters to people and invited them to have a preliminary list of people, an agenda, at least an outline of the background materials.
I am very concerned that the letters haven't been sent out yet, that we don't really have anybody verified, especially if we are asking people to come with some kind of presentation. These are busy people, and I assume it is going to take at least a week to get the letter out, and now it is going to be three weeks before the meeting. I just feel that it puts us in a very compromised position in terms of getting any decent response and attendance. I am very disappointed.
DR. GOLDEN: I'm sorry that I perhaps have not conveyed to you the amount of work that has gone on in here. The absence of a letter is just a formality. I spent quite a bit of time talking to people backward and forth. They have marked it on their agendas tentatively, and I think I have tried to do a fairly creditable job of using this memo as my guidance in talking with them.
DR. IEZZONI: Yes, it sounds like, Pat, you do have people lined up.
DR. GOLDEN: Yes, it is just a matter of wanting a formal letter from this committee. So I have talked to probably 20-some people. We don't have some lined up, because there is just a time problem, a complete unavailability of people to be available at the time. They may be the very persons that should be here. Some of the people don't have fall-back positions. They don't have staff. This is not a major initiative in the department, so that I am speaking to a staff, in that if one person can't come, there is an immediate person for that person to report to. In many cases, if the person that seems to be the most obvious person to come can't come, there is nobody else to come.
But there has been quite a bit of time put into this, and the letter, as I repeat, is a formality. But the people have marked tentatively on their agenda.
The other thing is, in terms of time, I too am disappointed. As I shared with you, I really am doing this in a more voluntary basis, and I was expecting that we would have some more staff support, which I don't have.
Additionally, probably in terms of what could have been done, I take full responsibility for misunderstanding. I have tried to not go too far forward by getting ahead of the committee and taking this on as a project that I have completely orchestrated. So I have done as much as I can, I think, acting appropriately as staff, but again recognizing that I didn't assume that it was without the committee's sanction of where we go on a step by step basis.
DR. IEZZONI: At this point, Pat, why don't we do this? Why don't we get a list of who you have lined up for the meeting in December, who they are, who they represent, where you think the gaps are, and can we have that list maybe within a day or two, fax it around, and get a sense of where the gaps are, and how you might think about us filling the gaps, given what you know from the 20 people that you have talked to. There may be some gaps that we are unable to fill, due to irreconcilable scheduling differences in possible schedules.
DR. GOLDEN: We probably could accommodate all of the people that might even be available. I guess for that reason, I have wanted some sense from the committee if my thinking is on target, before we commit to a group of people, if you have some other idea that you want to have.
DR. IEZZONI: Let's get the material as soon as possible, so we can make a decision right away, okay?
DR. MOR: Question. I'm looking at our charge here, and item number one reviews health programs involving the Islands and territories. I assume that somebody from Washington can answer those questions, because I know nothing at all about them.
DR. IEZZONI: Pat actually at the September 29 meeting that you couldn't come to, Vince, talked a little bit about some of that.
DR. MOR: Okay. The next one is major health concerns in these areas, geographic areas. I would assume that you would want somebody from these geographic areas or somebody that knows an awful lot about them.
DR. GOLDEN: We talked at the last meeting about all that.
DR. IEZZONI: It is true that we have a limited budget for this subcommittee, and we have chosen to spend the money that we have on the Medicaid managed care initiative. However, has the possibility that Olivia had some money fallen through?
MS. RIMES: I talked to Olivia, and Olivia was going to talk to Pat. There is some possibility and there is also some data support available.
DR. GOLDEN: And that was on the one area. Again, what we have and what I sensed again is the balance, which I thought was a concern of this committee. Obviously, we have far more islands represented in the Pacific than we have of the other two that are left. If it is the committee's pleasure to only have one representative from the Islands, that being Puerto Rico, I think that I need some guidance in that direction.
DR. IEZZONI: I don't think we know what our options are yet, Pat. So we need to have it written down so that we can all look at it, and help you think through --
DR. GOLDEN: I spoke with Marjorie, and it is clear from my discussions with her that we have no money to invite people. Then if we fall back to Olivia's budget, my understanding, unless you have a different understanding, is that they could support someone from Puerto Rico.
Now, if the committee feels that this is appropriate, to have one person and not people from the other Islands, then I'll need to have you answer that question.
Again, as I say, there are decisions that can be made. But it would just seem to me that I need some indication of what the committee's pleasure is. That can be viewed either way, that you have only invited one person and you didn't invite others. I don't think that it is appropriate for me to orchestrate this to that level.
MS. RIMES: Maybe in getting a look at who to talk to, we can get a better sense of the representation, too. I think these people will represent other areas, too.
DR. GOLDEN: You have in the first package, I think, if you have most of the people that I thought gave a broad brushed view of what the issues were.
DR. IEZZONI: Why don't we do this? I think that we have probably spent enough time on the management aspects of this right now. Why don't I work with Carolyn to make sure that -- because I know you are going to be leaving, Pat, soon, you have another commitment -- to make sure that within the next day or two, we know who is firmed up, who has this date on their calendars, what aspect of the memo that I sent you back in the middle of September that represents, where the gaps still are.
We need to find out from Olivia whether there is money, because if it turns out that there isn't, it becomes a moot point about whether we are inviting Atlantic versus Pacific, or both. Then we just need to make some decisions and move on.
DR. GOLDEN: I think I am looking for guidance from the committee at this point. I think I have taken it as far as I can.
DR. IEZZONI: Okay, well, we need specifics, so we can help you make those decisions.
DR. GOLDEN: And I repeat, the Virgin Islands is the major gap at this particular point in time, and I will continue. The addition is that we did mention that Olivia - - I think we agreed, her office would do the data.
MS. RIMES: She indicated that she had a staff person that would be willing to do that. But we again need to contact her and let her know that that is what we want.
DR. IEZZONI: Why don't we do the detailed management work outside of the formal meeting?
MS. RIMES: And I'll call you.
DR. IEZZONI: Thank you, Pat, for all that you have done. I appreciate that.
Now, should we take a minute and just get an update on where the OMB Directive 15 stands?
DR. GOLDEN: It won't take but a minute.
MS. RIMES: Olivia was kind enough to forward some material that should summarize this. If there is not enough, I'll be delighted to -- it's off the Web page.
DR. GOLDEN: The most salient points would probably be about four pages back. OMB accepted all of the recommendations of the committee with the exception of two. One was considered somewhat of a modification, in that the terminology for Hispanics was changed to Hispanics and Latinos, whereas we had just recommended the use of Hispanic.
The other was that the OMB broke out the Asian- Pacific Islander category into two categories, one called Asian and the other called Native Hawaiian or other Pacific. That is with respect to the collection. There are some other decisions throughout.
DR. MOR: So there are going to be six --
DR. GOLDEN: Five.
DR. MOR: Five categories, Asian and then Hawaiian and Pacific.
DR. GOLDEN: Yes.
DR. MOR: That makes six categories, I think.
DR. GOLDEN: We had four before.
DR. MOR: Four?
DR. GOLDEN: If you go further behind, it should show you the categories.
DR. MOR: It is on the second to the last page. So now we have five.
DR. GOLDEN: There are five in the race category. It would be six in the combined race category, and then the other would be the two ethnic categories.
In the reading, you will see some discussion about the issue of the non-use of non-white in text and in tables. There is also some discussion about not designating any group as a minority.
However, if you look in the discussion of tabulations, which was lifted from the previous OMB director, the word minority is used, so I don't know how they are going to handle that.
Now, what they are now doing is working in the context of one or two committees that are looking at policy issues and another looking at tabulation issues. A lot of the work in this area is going to be done at NCHS, where they are using the HIS, because HIS has already been allowing people to answer more than one race. It has a follow-up question about which race best describes you. That is going to be used to share some guidance about how the data for the multiple races can be calculated. There is a lot of discussion around that issue, because of the multiple uses of the many agencies needing the data tabulated in different ways. So the real hard work probably is remaining to be done around the tabulation plans. That is ongoing.
DR. IEZZONI: Our committee I think is going to have to decide how we want to follow up on this issue, because I think we are going to want to follow up. So maybe Hortensia, you can be thinking about what might be the questions that you might want us to begin to think about, given all the work that you did in preparing the initial response to this.
DR. MOR: Presumably this is going into effect now.
DR. GOLDEN: The 2000 census and up to 2003 is the out year.
DR. MOR: Right. What that means is that it is really now grappling with the issue of tabular presentation of output.
DR. IEZZONI: That's right, that is what I think Hortensia has been concerned about.
DR. MOR: From a researcher's point of view, what it means -- it just means there is more ambiguity, and it makes the ambiguity more obvious.
DR. GOLDEN: From a public health standpoint, whereas we don't have a multiple race, how are you going to put it into anything that --
DR. MOR: No, no, that is for consumption, for external consumption. Actually, from a public health perspective, it is much better, because now I have two bits of information to characterize someone, instead of just one. So from a public health perspective, it is actually much better. From a policy perspective, it becomes more complicated, because you have to decide what is the uniform standard approach for summarizing. Or whether to even advocate such an approach.
MS. RIMES: To explain the information that we get.
DR. MOR: Yes, right, to explain the differences.
DR. GOLDEN: I think that is the issue.
DR. IEZZONI: Maybe we can think about doing this -- talking about this at one of the breakout sessions at a future meeting, because I don't think it will be more than a couple of hours that we will want to spend on this.
DR. MOR: It would be great if we did that when there were data. We could actually look.
DR. GOLDEN: That is why I mentioned the work that is going on at NCHS, where they have been doing some tabulations. It may be a little premature right now; they have just started this. But I can see maybe a meeting or two.
DR. MOR: Maybe in the spring.
DR. IEZZONI: Maybe later in the spring or in the March or June meeting.
DR. AMARO: We also made some recommendations about participating in the groups that should be set up to follow up on health data. I'm not sure where all the groups are that are doing that. Are there other groups outside that are following up on the tabulation issues?
DR. GOLDEN: They have another committee that has been set up, other representatives from other agencies. We have three people now from NCHS who will be looking at one aspect of it, and probably a fourth person. Olivia I think is still involved and we can probably find out from her exactly what the makeup of this new committee is.
DR. IEZZONI: Maybe on tomorrow, Hortensia, when our subcommittee -- are you going to be here tomorrow?
DR. AMARO: I have -- the person who is teaching my other class can't do it, so --
DR. IEZZONI: Okay. We have a choice now. Thank you, Pat. I am anxious to make sure that Elizabeth participates in the discussion about where our site visits should be.
DR. WARD: Missouri is my one recommendation. I just know that the Center for Health Statistics has got a contract with the Medicaid agency in that state to evaluate Medicaid. So that is the one state that I am familiar with. That is the one suggestion I can make, because that is the only information I have.
DR. IEZZONI: When we had the meeting at the end of September, we heard from the researchers about a number of states that sounded like they had made significant progress in looking at managed care systems to support this.
Jason and Carolyn were going to do a little bit of research and come up with some options for us. So maybe right now, before you --
DR. WARD: I am particularly interested in the OASIS, so I'll keep hanging around.
DR. IEZZONI: All right. By the way, if anybody hasn't noticed, our subcommittee will probably break early. MS. RIMES: It is a devastating experience.
DR. IEZZONI: I know. I knew that you all would be heartbroken over this. Jason?
MR. GOLDWATER: Yes.
DR. IEZZONI: Are you the person -- you look like you are shoveling papers and organizing. Are you the person who is going to talk about --
MR. GOLDWATER: I can probably talk a little bit about it, sure.
DR. IEZZONI: -- about what our options might be. Remember, these trips are in like February and April. Was that what it was? So we had hoped to find a place to -- so we don't have much snow for the February trip.
PARTICIPANT: We talked about that, to include that as a variable.
DR. IEZZONI: Okay. So Jason, why don't you talk to us?
MR. GOLDWATER: I was at CDC-Atlanta since Saturday morning. Other than being there to hear virtues of being a Presidential management intern, there was a practical reason as to why I was there.
I did talk with the Office of Managed Care for most of all of Monday. They are part of the Office of Policy, Program and Evaluation within the Office of the Director, and they have done extensive work looking at managed care programs, particularly as it relates to Medicaid, in a variety of states.
The two states that seem to be coming up the most are the states that we did discuss in the September meeting, which were Arizona and Massachusetts. I did not unfortunately hear anything about Missouri, I apologize.
DR. WARD: I'm not attached to it. It's just that it is the only state I --
MR. GOLDWATER: Right. Arizona was for a few obvious reasons. One, it is the oldest program. It has been around for 15 years. They have a number of different registries that hold a number of different data sets, and because they have such vast experience, it would probably be one of the easier ones to evaluate. And as of last year, they had almost 400,000 Medicaid enrollees.
Massachusetts, I have lived there for nine years. I know Hortensia and Lisa are from there, so I don't really think I need to go on with this very much. Massachusetts certainly has one of the more innovative Medicaid systems. They have half a million Medicaid enrollees as of last year. Although it is snowing in February most of the time, I'm sure it will be cleared out in April.
Those were the two. There was some talk about South Carolina. Most of the people in CDC said that was not a good idea. The reason they said that is not because the system itself is poor; it said maybe in a couple of years, South Carolina would be something worth going at.
MS. RIMES: It is also not a state with a lot of managed care.
MR. GOLDWATER: Yes, they don't even have over 3,000.
MS. RIMES: I'm being kind, because I went backwards and did a ranking on which states had managed care, just to take a look at population concentration.
DR. MOR: You may want to know that Philadelphia is going through absolute hell right now, because the entire city has gone over lock, stock and barrel to managed care under the Medicaid contracts. And you will see it very soon in D.C.
I think the issue is whether in selecting these places, we want to see places that are further along, recognizing that in all cases, there are going to be horrible transitions.
MR. GOLDWATER: On that same wavelength, there were two more states that were mentioned. One is Oregon, which also has an excellent system, also highly innovative. Dave Fleming, who is the state epidemiologist there -- some may know him; I just talked to him for the first time Monday -- is quite enthusiastic about the possibility of working with those.
I have not done any extensive research in Oregon. I certainly have done statistics on them. But from what people were telling me Monday, their system is also ahead of the curve, comparatively speaking.
DR. IEZZONI: I must say, from what I have heard, Massachusetts and Arizona still do sound like --
DR. AMARO: That was the contention we came to last week.
DR. IEZZONI: I see nods around the table. Do you think there is any need to really flog this horse?
DR. MOR: Make sure Nelda is there.
MR. GOLDWATER: Yes, absolutely, yes.
(Simultaneous discussion.)
DR. MOR: She is an outside contractor, but she did it from top to bottom.
MR. GOLDWATER: She knows Arizona like better than anyone, probably better than Arizona.
DR. IEZZONI: So Jason and Carolyn, at this point you are now empowered to go out and set up these meetings for us.
(Simultaneous discussion.)
PARTICIPANT: I have one question. Did we want to have a breakout session in January to talk to a number of people about what we are doing for the site visit and doing a protocol for the site visit and the kinds of questions?
MR. GOLDWATER: I would highly advise that.
DR. MOR: This is like San Francisco, where they come to see us. But we are actually going to go to their places?
MR. GOLDWATER: Yes.
PARTICIPANT: What I recommend is that we draft up a little protocol and stuff, so that we can take a look at that in January, if that is acceptable.
PARTICIPANT: And the types of people we want to talk to
PARTICIPANT: And if we can have ahead of time whatever background information about each of the places.
MR. GOLDWATER: That's not a problem. I have files of it, so I would be happy to write up something.
PARTICIPANT: We'll not only summarize it, but I think we will try to filter through it to find the most poignant points.
DR. MOR: On the Massachusetts side, Massachusetts is at the point of putting together a big proposal for dual eligibles.
PARTICIPANT: I am more than aware of that.
DR. MOR: Okay, never mind.
PARTICIPANT: I believe we can work through that.
DR. IEZZONI: We need to remind them what the dates are.
(Discussion off the record regarding dates.)
DR. IEZZONI: So we have jumped things a little bit backwards, which was to decide on the states first. Now let's talk a little bit about the contractor situation. Jason, you're on that one, too.
MR. GOLDWATER: I unfortunately got back from Atlanta last night and did not have time to talk to Carolyn about what I learned. I will say this about the contractor, though. A lot of people at CDC were adamant -- and I am understating the attitude -- that Sara Rosenbaum should take the contract, absolutely. They brought up two very good reasons as to why.
MS. RIMES: We were having some major discussions about it.
MR. GOLDWATER: Right. They said that for a couple of reasons. The first was that there is really one centralized delivery or repository of information on managed care contract language dealing with the managed care providers, and Sara has access to that. It is hers, she has it. So she created it, it is there, and so that wealth of knowledge is at her disposal, whereas groups like Lewin or Medstat, which I know we're talking about, they have expertise in these issues, but do they have the expertise that Sara does? No, they don't. Do they have access to the information Sara does? No, they don't.
DR. MOR: There is also one that has basically all kinds of state governmental agencies. That is all with Sara in the same group?
MR. GOLDWATER: No, it isn't.
DR. MOR: Will she have access to that? Because that puts some of this stuff in the broader context.
MR. GOLDWATER: I would assume that she would, but don't hold me to that.
PARTICIPANT: I would not assume she knows that.
MR. GOLDWATER: You would not assume that?
(Simultaneous discussion.)
DR. IEZZONI: Jason and Carolyn, can you tell us a little bit about how we are phrasing the contract? I saw a draft that Carolyn and I talked about revising, and so just for Vince's information, and just to remind everybody what it is we want the contractor to do.
MS. RIMES: Basically, to look at the contract and make some recommendations on what actually exists in the contract or report. Then we were going to take it from there in setting up some site visits and stuff.
MR. GOLDWATER: To identify best-worst practices, reporting requirements.
MS. RIMES: What we want to know is what our managed care companies are supposed to report in terms of health data, what is the language in their contracts, what is it that they are supposed to report.
MR. GOLDWATER: One of the questions I have, Lisa, is, do we want the contracts to be specific to the states, or are we going to do the site visits, too?
DR. IEZZONI: No.
MR. GOLDWATER: You want it to be overall?
DR. IEZZONI: Yes, I think so.
MS. RIMES: Then we can narrow it to this eight that we are pretty sure we did, if we can keep it in some range.
DR. IEZZONI: And we want her to attend the January meeting, where we are going to be having people from a variety of different perspectives come and talk to us about what they want to know about Medicaid managed care.
If you all remember back to the September 29-30 meeting, that is what we decided our committee is especially good at doing, is convening decision makers, stakeholders, advocacy groups, different people, and hearing from them about what they want to know.
So we need to have her at that meeting, so she can hear with us what people want to know, because then the next question obviously is, do the data reporting requirements that managed care companies have embedded within their contracts allow them to answer some questions.
PARTICIPANT: I would like a meeting for Dave Fleming.
MR. GOLDWATER: Sure, sure.
PARTICIPANT: I wrote it down, because I'm pretty sure -- actually, there are a number of people that I would like to hear.
DR. IEZZONI: So that is what I wanted to do now, is begin to talk a little bit about who we would want at that January two days worth of hearings.
MS. RIMES: So we will go ahead and work with ASPE to do the contract.
PARTICIPANT: Let me make sure this is clear in my head. Eight states, you're saying?
MS. RIMES: No, it looks like from the SAMHSA stuff I reviewed, she has identified eight states that have some data, integration work ongoing. I think it may be more, but that is what she has in contracts.
PARTICIPANT: Is that just mental health and substance abuse?
MR. GOLDWATER: They are working with Sara to look at managed care contract language and make recommendations on what needs to be included from this point on. It is not just a data focus, it is overall.
PARTICIPANT: The data would be a part of that?
MR. GOLDWATER: Yes.
MS. RIMES: Right. What they are trying to do is develop a model contract language, so that these Medicaid managed care organizations -- I mean, the state Medicaid agencies would pick it up and actually contract for this.
PARTICIPANT: Which is what this committee wants to do in terms of data.
DR. MOR: I spent many, many, many hours on the phone with folks from the six New England states, going through the language for what the RFPs that they are going to let to contractors, to managed care companies, for doing dual eligible managed care. Since I knew nothing about this process beforehand, it was a very interesting, intriguing process, in terms of how much they could demand, how much they couldn't demand. That was led by the folks from Massachusetts.
So if you are going to be talking at that level, you may want to ask someone from Massachusetts. Actually, it is Meryl Feldman. I think she is now -- in fact, I know, she is now at Apt Associates. She left the state government.
PARTICIPANT: This is not an unusual trajectory.
DR. IEZZONI: Let's talk a little bit about the people that we do want to hear from in January.
DR. MILLMAN: I was going to suggest, we have been doing for the last year and a half an evaluation to the community health center program, going to 10 states, one of which is Arizona. Melvin McCall is actually the subcontractor on that. They have in a sense done a test of what the problems are of getting information out of the system, like they have to answer policy questions about, the different experience of community health center patients versus non-community health center patients in Medicaid.
I think they are learning some very interesting things about where are the deficiencies in the data. For instance, I don't know this in any detail, but the issue of, can you identify an actual specialty referral, do you know who the specialist really is, even when you have the encounter data.
So I think there are a whole set of issues about the utility of the data that you can't get from just, is the data requested. Because there are issues about quality data and how you want the data to look, in terms of really being able to answer questions.
MR. GOLDWATER: That was another focus of discussion on Monday, was the utilization of the data that might be collected or should be collected. That was a huge component.
DR. MILLMAN: Because a lot of the current data for instance was requested in the 1115 waiver process.
PARTICIPANT: We heard a considerable amount about what is available.
DR. MILLMAN: But Arizona at least is considered good quality data, but there are still issues about data gaps that I think you really want to hear.
DR. IEZZONI: Well, recommend some folks for us to have. I think it is going to be critical for us to hear at the January meeting from patient advocacy groups.
MS. RIMES: Yes, that is what I was thinking about, in terms of representing the Medicaid --
DR. IEZZONI: Absolutely, people representing the Medicaid -- exactly.
MS. RIMES: Are they hoping to get something out of this, is it just going to be that scientists and the policy makers are going to sit around and look at data.
DR. IEZZONI: Right, but that is the most critical piece we have got to get.
MS. RIMES: For me, it is the providers who are being overwhelmed. To me, I had no problem with the word rationale, because I turned to Richard and said, the system is irrational, that is what she meant. We're just trying to turn an irrational system into a rational one. Because everyone is out there turning data requirements and protocols and performance objectives, and everybody has got a different set. Providers are going nuts. They are going to get eight computers on their desks to answer all these questions.
I don't know who that is, in terms of maybe Arizona, Oregon, might have some experience about how they got a system that actually providers don't mind using.
DR. IEZZONI: We need to look into that, to find some provider representatives to articulate that.
MS. RIMES: And we need to hear from states where the providers are serious about being asked to provide data, and without the assistance of, how are you supposed to get this data to us, is it logical at the client level when you are doing an encounter, is it an additional form, how irrational does the system look.
DR. MOR: I think we do need to hear from clients and consumers.
DR. IEZZONI: Absolutely. Remember, we are talking about --
(Simultaneous discussion.)
DR. IEZZONI: We are not talking about the site visits. We are talking about the January meeting, about what do people want to know about Medicaid managed care.
MS. RIMES: What about the alliance groups, because a lot of the alliances are being sent out just to walk in the middle between everybody.
MR. GOLDWATER: What do you mean, alliance? Networks?
MS. RIMES: There are all kinds of different terms. There are some independent organizations --
MR. GOLDWATER: Is it like case management agencies?
MS. RIMES: It is not that good. There are some in Utah, Massachusetts has one that is trying to convene everybody together around the table.
(Simultaneous discussion.)
MR. GOLDWATER: I thought you meant providers.
MS. RIMES: I'm just asking about alliances.
DR. IEZZONI: I think we want to hear from governors, legislators.
MS. RIMES: Their expectations about what can magically come their way to help them make decisions.
DR. IEZZONI: So people from the governor's council, if there is an analogous organization for state legislators, but the patient community, provider community.
PARTICIPANT: I would like to make sure that we have good representation, not just one person here or there, from mental health and substance abuse.
MS. RIMES: Yes, that will be probably like the easiest, because they are so committed there.
DR. IEZZONI: Hortensia is right; we often tend to just have one token person like that. I think we should a panel on --
DR. MILLMAN: Eric Keppelman told me so many stories the other day, I could barely keep up with him.
MR. GOLDWATER: What about contractors or researchers, consultants? Do we want to invite them?
DR. IEZZONI: What they want to know about Medicaid managed care?
MR. GOLDWATER: Or people that have done extensive work with Medicaid managed care that could comment.
PARTICIPANT: HCFA has just let an evaluation contract to do the evaluation of their Medicaid managed care programs.
DR. IEZZONI: I would rather hear from people on the ground in January, because we can bring the researchers in at other times to comment on what we are learning, like we productively did at the end of September. That was very useful.
MR. GOLDWATER: They are working on interfacing public health agencies with state Medicaid agencies.
MS. RIMES: That is what I used the term alliance with, but God help us. But we will figure out some nice word on that.
MR. GOLDWATER: Because there are a couple of people I know that are doing that kind of work.
PARTICIPANT: Like the agencies that have gotten the contracts for the mental health services and substance abuse services. I'm thinking in our state.
DR. MOR: They are doing a carveout. They are the managed care provider for the carveout.
PARTICIPANT: Right, and then they contract out with all these little agencies and the community would do the services. They have to gather a lot of data, and they can make comments, and also have observations about what would be good to track and what is being tracked.
DR. MOR: And how viable it is to have them collect it from their sub-sub-subcontractors.
MR. GOLDWATER: I know Betsy Padula did have the carveout contract in Massachusetts. I talk to her frequently. She started her own agency.
DR. IEZZONI: And this might be a real good thing to do as part of the site visit, too.
DR. AMARO: The behavioral health network is the one that had -- well, they are different. They have the contract for case management, and that covers a big piece. So there are a few groups. I can give you their names.
DR. IEZZONI: Let's learn from the experience that we seem to be having with the Islands and territories meeting. Let's get the Federal Register notice and let's get a list of --
DR. MOR: We will empower you to have some discretion.
(Simultaneous discussion.)
DR. IEZZONI: Because I think it would be very good to have this.
MS. RIMES: I am also worried about drafting a protocol, too, so let's do both. You know how weird I am about methods.
DR. IEZZONI: I think what we should do is get started on -- we need to get the contract signed. There are a number of things that have to happen first. I think Sara might be able to help us think about protocol as well.
So I think that it would be good for you to come to us with a draft protocol that we could react to. It is easier to edit and to add to. As we learned in July when we tried to have the open forum about what would you want to know, we filled pages all over the walls. I think that it would be better for us to be able to react.
PARTICIPANT: Let me ask another question. Are you using protocol for different things here? Do you mean a protocol for a meeting as well as a draft for the request for contract?
DR. IEZZONI: No, I think what we are talking about is at the site visit, what kind of questions.
(Simultaneous discussion.)
DR. AMARO: An information gathering approach.
PARTICIPANT: I saw this concern about the contracts, because I'm going to be working probably with that. If there is anything more specific that you could tell us to assess --
PARTICIPANT: We have the draft and we have some amendments to it, and I think what we are going to want to do is maybe put a little more specific language in about what we want from Sara. But I think we can do that now. I became a little concerned.
DR. AMARO: So our end goal there is to come out with a report that helps us answer the questions related to Medicaid managed care that we came up with, those four or five questions that we came up with in the beginning?
DR. IEZZONI: Well, it is very focused on the data systems. That is what our committee does. But we basically have transformed somewhat from what was written there, based on our September 29-30 meeting.
I think what we will want to come up with is recommendations for what managed care providers should be -- (End of Tape 1, Side 2.)
PARTICIPANT: In Arizona, they had some changes in contractors, and what are the data implications of big-time changes in contractors.
PARTICIPANT: Nelda can talk about some of that.
DR. IEZZONI: Okay, it sounds like we are running forward on that. Are there any other comments or questions about that?
We have two more items on our agenda. One is hearing from Carolyn about OASIS.
MS. RIMES: I've got a draft that sums up some of the post acute care issues that are going on.
DR. MOR: Who wrote this?
MS. RIMES: Sue. I want to talk a little bit about what is going on with OASIS first, and then go into just generally some of the issues that HCFA is dealing with.
In terms of post acute care, because there is an awful lot of activity, to some extent. You heard Dr. Jenks talk this morning about some of the activities going on in one component.
Tomorrow I'm going to go down and talk to Mary Vienna, who is the person that will be drafting the response on the letter. We had a little discussion about --
DR. IEZZONI: They did receive our letter about OASIS.
MS. RIMES: The letter was sent, and she has a copy.
DR. MOR: Who is she?
MS. RIMES: Mary Vienna, is the person that is identified within HCFA and the quality component to respond to OASIS. It is her component who is doing the NPRN.
Within the last couple of weeks, I made sure she had another copy of the letter, and they will be responding.
DR. MOR: But she did get the first, eh?
MS. RIMES: I am going to go down and visit with her tomorrow and talk about what the subcommittee does and the relationship of this subcommittee to the Secretary, and the relationship to the Data Council. The quality people do want to respond and are committed to responding. It will probably be Mary Vienna and Steve Clauser, who you heard present on OASIS.
It appears that OASIS will be the system of choice for the home health data collection system.
DR. WARD: Does that mean it is required or mandated?
MS. RIMES: I think it is going to be required. It will be certainly re-evaluated over a period of time, but at least at this point from the quality people, that has been the decision that has been made.
With the reorganization of HCFA, it is awfully hard to know who is responsible.
DR. MOR: Last week there was a meeting.
MS. RIMES: You probably know more than I do.
DR. MOR: I get e-mailed on this topic daily, or every night, multiple things, with Tom Hoyer, who is in charge of payment and policy. I guess one of the more relatively influential folks still around with a number of policy successes. He was briefed on the difficulties and problems associated with the OASIS from a variety of different perspectives. I think he understood what the implications are of going to alternate systems for any kind of post acute integration.
My sense in talking with Sue Nonemaker after that is that there may be some sufficient internal politics to force the issue to move towards OASIS, but he wanted to try to wait until some data come in from a study that is now just under way.
MS. RIMES: There are a number of studies that are just under way. What you have that Sue kindly wrote up is basically a synthesis of what will be out. The Research Triangle study is taking a look at creating a forum that will consolidate all the data requirements for payment, and tie everything together in a bundle of post acute matters, including long-term care hospitals, home health, SNFs.
DR. IEZZONI: I don't see RTI in here at all.
MS. RIMES: No, it isn't, but they are the ones with the contract.
DR. IEZZONI: Because this doesn't look like an integrated approach towards post acute care.
DR. MOR: In addition to what is here, I think the first one talks about the minimum data set creation. That is the first paragraph. The second paragraph is, John Morris currently has a contract to do a short study of post acute for the nursing home world. It is still under discussion.
MS. RIMES: He was also involved with the sub acute world.
DR. MOR: Right, the sub acute world, sub acute, post acute, whatever, for the institutional population. Then RTI has a contract which is not noted here, for what is called the UNAI, uniform needs assessment instrument, which is basically a hospital discharge form which is going to look like the -- it has been around for a long time, the UNAI, and it has many of the same elements as the MDS component.
Then there is the OASIS. Then John Morris also has a contract for version three of the MDS.
(Simultaneous discussion.)
MS. RIMES: There is the rehab data collection system, and they want to also make the MDS system compatible between the rehab --
DR. MOR: Which is basically the rehab using FIM. But since FRGs are not being approved, it is rather RUGs that are being approved and FRGs are not being done.
DR. IEZZONI: In rehab? I thought they were.
MS. RIMES: At this point, for this kind of system, it may not be part of the payment or collection process.
DR. MOR: No, it doesn't look like FRGs are going to make it. Functional rehabilitation -- basically, the FIM notion, take a few diagnoses and some scores and boom, you've got it. So RUGs is likely to be used for that as well.
DR. IEZZONI: Actually, this is emblematic of the problem.
MS. RIMES: Let me add another couple of layers. Even within HCFA, there is finally a conversation at the table, because it is so confusing, where all the parts at least get together and chat. There is also a research component that has been recently let to do kind of like a demonstration planning mechanism, which also included the creation of the unified form. Bob Kane is working on that, as many of you know, and that will be something that at some point we may want to watch, because Bob is doing some interesting data collection things across the states, and a variety of other things on that.
DR. MOR: Yes, he is, and it is pretty much guaranteed that it will not be compatible.
MS. RIMES: One other thing. There is an ASPE contract also that is looking at more of a research focus. Korbin Liu is the prime.
DR. IEZZONI: Andy Kramer.
MS. RIMES: Kramer, that is what I'm blocking.
DR. IEZZONI: Pete Shaughnessy is Mr. OASIS.
MS. RIMES: He is OASIS, and then Kramer is going to approach him to do encounter data and MDS and a few other things.
DR. IEZZONI: I think that even writing up the direct transcript of the conversation that we have just had would be a very informative document, because this is a mess, and it runs totally contrary to administrative simplification and HCFA, and the whole effort to try to rationalize data collection. I think we need to go on record about this again.
The first letter was just OASIS, but we need to have a little bit --
PARTICIPANT: But to me, this is a data collection issue. This is a -- Don Detmer or whoever goes on the Data Council needs something from this committee.
DR. MOR: But I don't think this issue has ever come up with the Data Council. HCFA can't even get together at the same table on what their strategy is on this, much less inter-agency relationship on this.
MS. RIMES: A letter was sent to the Data Council, to co-chairs in the Data Council.
(Simultaneous discussion.)
DR. MOR: But the piece on OASIS was just one very specific. Has anyone had a discussion of what the paradigm is and could be? What is most distressing about this is that it is possible in some sectors to actually think of this as the first test of a real paradigm of this model we talked about this morning. For some silly reason, it is just not viewed as a whole within HCFA, because HCFA is dealing one industry by one industry.
PARTICIPANT: Also, there is no one HCFA at this point. There is a million cats territorializing.
DR. IEZZONI: I think what we ought to do is this, empower you to write a first draft based on the transcript. If we can get a transcript of what was just said, -- but it is really true. And this could be written in a way that would be quite -- with all the different players. I think that we ought to maybe have a draft of a letter to review at our next meeting. When is our next big meeting?
MS. RIMES: December or January.
DR. IEZZONI: December or January. Yes, we ought to have a draft. Vince, you can help us with what your schedule is like. We ought to have a draft that we could bring in front of the full committee to send to the Data Council, because this is a mess.
PARTICIPANT: And it would be a really concise problem statement, that this is an example of how government to the rest of the world looks totally impossible.
DR. IEZZONI: Yes, exactly.
DR. MOR: I can do this from two vantage points. One is a negative one, the other is, there is a paradigm, that an opportunity would be missed.
(Simultaneous discussion.)
MS. RIMES: If the opportunity is missed, then you could say this is what we are concerned about.
PARTICIPANT: And I think the point is, it goes contrary to administrative simplification elsewhere.
DR. MOR: Here we are, worrying about code sets, and the acute care hospital sectors, when there are multiple sets of code sets here, and it is just a question of rationalizing how they fit, particularly given the paradigm of, it has got to be clinically useful, as opposed to somebody else deciding what is going to be useful.
DR. IEZZONI: Okay, enough said on this topic, I think.
PARTICIPANT: I just have one quick question. Is time an issue for doing these decisions? Because the next full committee meeting is March.
DR. IEZZONI: Then we should have a draft to --
PARTICIPANT: My suggestion was, the executive subcommittee is meeting with the subcommittee chairs November 18 and 19.
DR. IEZZONI: Yes, but that is in two weeks.
DR. MOR: Or I could drop a letter in e-mail.
DR. IEZZONI: All right, why don't we do that?
DR. MOR: I'm not going to write a long, long, long letter. Nobody would read it.
DR. IEZZONI: No, it should be a page and a half.
PARTICIPANT: Try and keep it a page. We can track it.
DR. IEZZONI: This has been productive, although very worrisome. All of us are taxpayers, after all.
(Simultaneous discussion.)
DR. IEZZONI: You don't want to write it humorously, but hopefully people reading it will see the black humor in it.
Now, there will be a discussion downstairs about the unique patient identifier. Do people want to talk about it here, or do you just want to go downstairs and talk about it?
DR. WARD: I would just like to make one comment on conversations Don and I were having. I agreed to bring what he had as a great revelation. It is a concern to every subcommittee, and what we would like to do is -- what he recommended and I agree with, that we say that this is a full committee issue, and we don't want to have separate subcommittees talking about the unique identifier. If we are going to do something about it, it ought to be done as a full committee, some set of hearings.
Yes, I think we need to do something about it, what it is needs to be done at the whole committee level.
DR. IEZZONI: That is a very good idea, Elizabeth.
DR. MOR: I absolutely agree that it should be done at the full committee. I'm not sure that any more hearings will get us any further. I think the data are out there, there is no consensus, and it is a hot topic. I think we probably need to be guided by some kind of cost benefit analysis that we then all have a discussion about. It is probably political in real dollar costs and benefit.
PARTICIPANT: Can I just put something on the table for consideration regarding this? I think one of the things that is missing is some kind of PR effort to convince the public. The benefits side does not seem to me to -- the case doesn't seem to have been made really clear, especially for (words lost) populations. We don't know what people are getting, where they are going, what difference it makes.
A unique ID will be a critical component of that. But I don't think a case has been made very well. It is one piece of the case, but it seems to me that our role is to put that on the table, why this is a public benefit.
DR. IEZZONI: But the point is to do it at the full committee level. I think that that is a good idea.
MS. RIMES: It is the risk-benefit. I think we have found experiences around different kinds of things, where the public is willing to risk some exposure because of the benefit. But I think you're right; right now, everything is so polarized, there is no middle ground of what would be a compromise position and what it would look like.
PARTICIPANT: I also read the Secretary's statement that we have got in here. It seemed that there were places in there to reinforce more of the security issues and the consequences, legal consequences of sharing information inappropriately or deliberately.
I think the other question that must come up for the public (words lost), but the consequence to an individual. So I think the public is going to perceive that there are still holes in this, and it is an outright, purposely distribution and dissemination or misuse of some data. But what about when it gets out of the system and still, an individual suffers? What kind of recourse does the individual have? What kind of legal consequences are there going to be to the system.
So I think the public is going to perceive that statement a still having a lot of holes in it. They are going to be looking for protection, in addition to cost- benefit, to more protection.
PARTICIPANT: And they are only going to get that unless Congress finally passes a law.
DR. MOR: Unless Congress passes an apparatus. That is part of it. That is what groups have been struggling with. Yes, on the one hand putting all this stuff in big databases makes big mistakes or big compromises -- makes any compromise potentially bigger.
But right now, someone has recourse if they can possibly prove in a court of law that they are hurt because of someone's negligence or an institution's negligence due to posting their HIV status or something like that on the walls.
But that is the tort process in the U.S. I don't know if there is any recourse.
DR. AMARO: I think it makes people feel like the chances of it happening or the potential for misuse is bigger because the system is more organized.
DR. MOR: In actuality, it probably is the case that the number of events will drop. It is just, the magnitude of the events will be much bigger when they occur, because you will have the entire database you can get access to.
DR. IEZZONI: So Simon was going to make that proposal. Do people have any other things that they want to talk about right now? No? So why don't we adjourn?
(Whereupon, the meeting was adjourned at 3:45 p.m.)