[THIS TRANSCRIPT IS UNEDITED]

DR. IEZZONI: I think we are going to get started. Welcome everybody. This is the working meeting of the Subcommittee on Populations, during which we hope to make a lot of progress, okay, and kind of tie up some loose ends that have dangling for awhile.

I am Lisa Iezzoni. I am from Harvard Medical School and Beth Israel Deaconess Medical Center in Boston. I am the chair of the committee.

Why don't we go around the table and have everybody introduce themselves, including those of you in the back of the room.

DR. TAKEUCHI: I am David Takeuchi from Indiana University, sociology.

DR. STARFIELD: Hi. I am Barbara Starfield, Johns Hopkins University.

MS. RIMES: I am Carolyn Rimes. I am staff to the subcommittee.

DR. EDWARDS: Brenda Edwards, National Cancer Institute with the Surveillance Research Program.

MR. HANDLER: Aaron Handler, staff member to the committee. I am with the Demographic Statistics Branch, Indian Health Service.

DR. MILLMAN: Mike Millman from the Health Resources and Services Administration.

DR. VAN WALKER: John Van Walker, Health Care Financing Administration.

DR. CLARK: David Clark, Health Care Financing Administration.

MR. SUMME: I am Jim Summe with AHCPR.

MR. HITCHCOCK: I am Dale Hitchcock. I am staff for the committee from the ASPE Data Policy Office.

MS. COLTIN: I am Kathy Coltin. I am a member of the committee. I am with Harvard Pilgrim Health Care in Boston.

DR. NEWACHECK: I am Paul Newacheck with the University of California at San Francisco.

DR. IEZZONI: Okay. Why don't we start with the folks in the back of the room.

MR. WASHINGTON: Bill Washington from HCFA.

MR. O'DONNELL: I am Jack O'Donnell. I am a consultant representing Delta Dental Plans Association.

MR. GOLDWATER: Jason Goldwater, National Center for Health Statistics.

[Further introductions off microphone.]

DR. IEZZONI: Good. Okay, great.

The agenda for today you all must have by now. What we would like to do is first hear from our HCFA guests and then the subcommittee is going to work. Okay? We are going to try to -- will Ann be coming from G.W.? Okay. Because what we would like to try to do is get a really good handle on where we are heading with the Medicaid Managed Care Report.

After lunch, Barbara, immediately after lunch, I would like to have you maybe report on your discussions with Hortensia and Olivia Carter-Pokras on the Healthy People 2010 recommendations that we, hopefully, will have a letter from our committee that Don Detmer will be signing for the November meeting.

DR. STARFIELD: Olivia should be here, I suppose?

DR. IEZZONI: Yes. Olivia is scheduled to be here, I believe.

And then later in the afternoon, we will get -- we will be able to review an outline from Joan Turek on the islands and territories meeting, that we would like to wrap up the report from that as well.

Finally, at the end of the day, we just need to finally approve the charge and work plan for our subcommittee, which has been dangling for months and months and months.

Okay. So, that is the agenda. It is a real working meeting. So, we would like to hear from our HCFA folks. Which one of you would like to go first and can you tell us a little bit more about your job that you do at HCFA, as you begin your presentation.

Agenda Item: Discussion of Health Care Financing Administration

DR. CLARK: This is David Clark. I am with the Health Care Financing Administration in its Center for Health Plans and Providers, currently acting as the acting director for our Office of Professional Relations, responsible for communicating and working with various provider organizations in terms of the Center for Health Plans and Provider -- primarily Medicare -- Program as we move forward with changes on the fee for service side, as well as in our Medicare Plus Choice Plan and just trying to keep them informed.

Right now, much of my time is, I guess, dominated by Y2K in trying to get assistance from the various provider organizations and their fierce participation and cooperation and coordination in getting their constituents in line and compliant with Y2K so that there is no disruption of services in the new millennium.

I am also getting involved in a number of projects in HCFA concerning minority beneficiaries, special populations, however you cast that and then have been involved in either the design, development and implementation of a couple of programs, one of which was the Horizon's Program through the peer review organizations in which we were sort of, I guess, we were a partnership through the peer review organizations and communities in trying to assist minority populations and making better use of the covered benefit for influenza and the different vaccinations that are available through Medicare and trying to partner with communities and stirring changes in health seeking behavior in those particular areas.

Also, I have been involved with developing areas or trying to define cultural competency in the agency. Effective January of 1999, Medicare, as well as Medicaid managed care organizations will come under a system of -- a joint system for quality improvement called a Quality Improvement System for Managed Care or QISMC, as we use as an acronym.

Within this system, managed care organizations among other things will be required to do cultural competency improvement projects for the beneficiaries and work with the University of Pennsylvania in terms of trying to define cultural competency, as well as trying to define or give some framework for providers in doing cultural competency projects to improve outcomes of care for our beneficiaries.

I have also been working with at this point in our Center for Quality and Standards are now in the process of developing measures for cultural competency and have been involved in assisting in that effort as well. So, a long winded answer to the question.

What I wanted to do this morning was, as I understand, to share with you where we are with the OPL letter, OPL 068, which --

DR. IEZZONI: Can you define for people what OPL is?

DR. CLARK: Sure. Office Program Letter, in which we were trying to define for -- clarify for beneficiaries the rules and policies concerning the collection of race and ethnicity.

Let me just give a little bit of background. As I say, being involved in some of the minority beneficiary activities, data is, of course, essential to understanding what and how beneficiaries are using our services, how they are impacted by the care that is provided and that it is fundamental in the effort in working with population groups is the ability to understand and discern what is occurring within individual population groups.

Looking at that in managed care, there was something of a dilemma in terms of talking with other staff members that we have really kind of given, I guess, an ambivalent or somewhat complicated message in terms of the plans in terms of their ability to collect race and ethnicity data, primarily germinating from the concern to avoid discrimination in terms of pre-selection and adverse selection practices or plans. So, it is primarily an effort to protect beneficiaries.

We were pretty much -- had up until that point of the OPL being issued, plans were revised not to -- were silent on the issue of collecting race and ethnicity data or no real formal directions given to the plans to do this.

DR. STARFIELD: Can I just ask a question?

You define culture by race, ethnicity. There used to be something called culture of poverty. I mean, is there any thinking about different cultures -- cultures having to do with social class, as well as race and ethnicity?

DR. CLARK: Oh, absolutely. Socioeconomic effect and probably direct health seeking behavior as much if not more than race and ethnicity. This is, I guess, a fairly accepted scheme of looking at that phenomenon as well.

So, what we are trying to do with the OPL basically was to give a clear set of instructions to our managed care organizations that they can, in fact, collect race and ethnicity data. What we tried to do in the OPL was to say that, however, it has to be done after enrollment, again, with our whole emphasis and concern trying to protect beneficiaries from adverse selection and not being steered into one plan or another based on race or ethnicity.

That was what we basically stated in the operations policy letter in April. What we ended up -- as a result of that, we had feedback back primarily from the Office of Civil Rights, but also AHCPR and HRSA that that really isn't accurate and correct, that plans bylaws have the ability to collect race and ethnicity data, not only before enrollment but during enrollment and after enrollment as well.

I sat in and worked with the Office of Civil Rights staff on a couple of occasions in terms of trying to really nail down the language that would go into a revised OPL to make the corrections, so it would be compliant with Office of Civil Rights law and from the very beginning in terms of the feedback to HCFA, we wanted to work with the other organizations and the government to be compliant with those requirements.

So, we made the changes. Early in the summer, we had a meeting with the -- I presented before the Data Council in terms of what we were doing with the OPL, assuring them that the changes would be made to be compliant with the Office of Civil Rights suggestions, made those changes in the OPL, circulated informally to the Data Council for their review and I have gotten some feedback from the Office of Civil Rights.

There were a couple of points -- I still need to tweak the language a little bit but, by and large, they agree that the revision -- the language in the revised OPL is acceptable and we will make those final changes in terms of saying before, during and after because I think the way I have it right now, it doesn't say "after," but it will say after enrollment as well and we will be circulating that with then the normal distribution for at least out to the plan.

DR. STARFIELD: Can I just ask my question in a different way? You talk about race, ethnicity data, but what about SES data, income, education, occupation in particular and as is going to come up in our discussion later on on the objectives for the nation, where disparities of all sorts -- data on disparities of all sorts is being urged. So, is that in your thinking that it is data not only on race and ethnicity but also on --

DR. CLARK: No. I recognize the need for collecting those other data, but at this point I haven't made any plans or efforts along those lines in terms of actually getting out yet another instruction to an OPL to change the behavior in the plans.

DR. STARFIELD: Is there any thinking about doing that?

DR. VAN WALKER: I believe at this time the only intentions we have are to do comparisons using census data and things like that to overlay catchment areas, those kinds of indirect approaches.

DR. STARFIELD: Geocoding sort of thing.

DR. VAN WALKER: Geocoding, the tiger files, all those kind of trigger files. We don't have a real mandate to direct us and part of the issue that led us to make the mistake in the first place was to attempt to avoid putting our beneficiaries in what they often see as adverse circumstances during initial enrollment process. Adding collections about how much money you make is counter to the culture we come out of ourselves. So, I do not believe there is an active project in HCFA to do that at this time.

DR. CLARK: Also, there is another factor in terms of Y2K in terms of the strains that it is putting on systems development and any kind of changes that would need to occur to make those data available. Resource-wise, it is just not possible right now. I believe the Secretary has declared and so has the administrator that Y2K is one of our highest or if not the highest priority in the agency in terms of making sure that our systems and the provider systems are working and Y2K compliance will assure health care for our beneficiaries.

DR. IEZZONI: David.

DR. TAKEUCHI: I am curious. In the proposed letter, will there be a sense of standardizing the racial or ethnic classifications?

DR. CLARK: With that we refer back to the revisions that were made in OMB Directive 15, with the changes that were recently published and they used the various categories that were included in there. But you did trigger another thought with regards to the letter and that was that the Data Council, Dr. Eisenberg directed us to include some -- identify different options where plans might get assistance from other components in terms of collecting these data and we have it. We have done that and will be including different organizations to be identified with telephone numbers that plans can call for assistance.

DR. VAN WALKER: I would just like to add that nothing in our instructions would prevent plans from using more discrete categorizations, as long as they can be rolled up in the Directive 15 categories. We regard it as general guidance, not as the most you could collect.

So, in certain areas, a subdivision of Asian populations, whatever, might be completely appropriate and useful.

DR. STARFIELD: I want to make sure I understand that. You are going to follow the OMB classification or something?

DR. VAN WALKER: Directive 15 at the HCFA collection level requires you to be able to summarize into the five, six major categories. We would require that as well, but we regard it as general guidance and more specific discrete collections are possible, especially if they have a use for that particular managed care plan. That is not being barred by our instructions. It just has to be convertible into the Directive 15 categories for summary purposes and reporting purposes.

DR. IEZZONI: John Van Walker, do you have something you would like to add?

DR. VAN WALKER: I was mostly here to support Dave. I am on the staff of the HCFA's chief information officer and he has overall responsibility, according to the departmental guidelines certainly, for data collections of all types, data storage and data dissemination. This is an area I have been working in for some years.

I was the program manager for HCFA's Hispanic collection a couple of years ago and I am also the HCFA, I guess, subject matter expert on Directive 15. So, I interpret that policy for other people.

But Dave and I have been working together on this specifically with Steve Melev(?) in the Office of Civil Rights to make certain that this time we get it right and still achieve HCFA's program purposes.

DR. STARFIELD: You probably are aware of the core data elements that the National Committee put out a couple of years ago?

DR. VAN WALKER: Yes.

DR. STARFIELD: And I wonder to what extent you feel that they are compelling or not compelling. I mean, obviously, you don't think some of the categories are compelling.

DR. VAN WALKER: Compelling?

DR. STARFIELD: I mean, not enough to follow them.

DR. VAN WALKER: To be completely frank with you, this is not a topic that gets a lot of discussion right now. The data activities in HCFA during this period of time are essentially de minimis because of Y2K and conversion problems and especially the issues that we have in moving from the database structures we have, which are obsolescent, to say the least, into new ones.

Until that point of time, except for specific target studies that are coming out of the Office of Strategic Planning, this is not being looked at across the enterprise. It just isn't. And it is probably two years away before you could get such an initiative sponsored.

DR. IEZZONI: David, can I just summarize what I thought I heard you say, that I just want to make clear, because I know that one of our recommendations from our Medicaid managed care work over the last year will be that we need to know race and ethnicity information about Medicaid managed care recipients.

Are you actively requesting that Medicaid managed care and Medicare managed care plans collect race and ethnicity data or are you just giving them permission to do so if they wish?

DR. CLARK: A couple of points there.

In terms of Medicare, this OPL went out to the Medicare managed care plans directly and it was basically giving them the permission of clarifying whether or not it was acceptable to collect race and ethnicity data.

DR. IEZZONI: It was a permission issue rather than a request?

DR. CLARK: Exactly. Also, in terms of Medicaid, there is coordination within the agency in terms of the Medicaid sending the letter out to the state Medicaid directors at the same time, sharing with them what we were doing on the Medicare side, when they get Medicaid, given the nature of the Medicaid program being actually administered at the state level, it is the states' directive to place that requirement in their plans.

So, there is that coordination in terms of the activity, but it has not yet been mandated in terms of the data collection that the plans would submit that. However, under the quality improvement system, if you are going to do those projects, you are going to have to know at that level of detail what is going on with the beneficiary population.

So, it is still creating that demand in terms of our understanding what is occurring at subpopulation levels.

DR. IEZZONI: Because there seems to be -- you have got multiple different jobs and responsibilities and it seems like part of you -- a part of your job is kind of saying one thing and another part of your job isn't saying something different, but isn't necessarily going to feed into productively supporting the other part of your job, which is looking at the experiences of racial and ethnic minorities in quality of care access, et cetera.

DR. CLARK: Well, trying to enhance -- no, no, I would disagree.

DR. IEZZONI: Clarify.

DR. CLARK: In part of -- in cooperating, I guess, under the new organizational structure in HCFA, it is predominantly a matrix operation so that this -- and I chaired a work group in HCFA looking at minority beneficiary issues and one of the recommendations that I made was that HCFA needed to establish a centralized focus group that dealt with minority beneficiary issues and it was right at the time that we were doing the reorganization and basically that recommendational report kind of got subsumed in just getting the whole place in structure.

But since that time -- and I am really, really pleased -- there is just a lot of work that is going on in the agency across different pockets and one of the points that was -- in terms of the rationale for not putting a centralized office was that by diffusing it, it becomes everybody's job so that this is -- it is being worked on in our quality area. Our strategic planning group is looking at developing a research agenda around race and ethnicity issues and cultural competency.

Our beneficiary service area is looking at communication issues and how to get useful information out to beneficiaries to the system and making choices. And the state Medicaid operation is doing similar activities. So, it is actually happening and there are a lot more people than just me looking at this and working on it.

DR. IEZZONI: Well, it sounds great. I guess what I was reacting to is that giving plans permission to collect the data doesn't mean that they will. So, you may not have the data that you need to do all these other wonderful things that you are talking about doing.

That was kind of where I was seeing the disconnect. But that may be part of our recommendations actually coming out of this Medicaid Managed Care Report that we actively request this kind of information. It is interesting to hear you talk about collecting it prior to enrollment versus during enrollment versus after enrollment because I think we might want to clarify that we want it collected after enrollment.

DR. CLARK: That is where I started.

DR. IEZZONI: I know that is where you started but we are an advisory committee. So, we can kind of give our advice and there may be -- I guess you said the Civil Rights Office, that that was not the spirit and the letter of the law on that.

DR. VAN WALKER: I would also like to clarify that there are two levels here. What the OPL does is give the plans permission to collect racial and ethnic data locally for local plan purposes, for community outreach purposes, for focused medical studies and things like this. At the national level we actually already have this information. It is just that operationally we don't share race information down to the plans because it wasn't seen as having an operational purpose.

So, we can still roll statistics up and do cross plan studies based on the national files.

DR. IEZZONI: Right, on Medicare eligibility files. But you won't have that for Medicaid, which is what, you know, we are going to be talking about today.

Yes, Aaron.

MR. HANDLER: For about 10, 12 years, I was the OMB information collection and clearance officer for my agency, a federal agency. And if a federal agency requires non-federal people or organizations to collect information, you do need to get OMB information collection approval, unless the information is collected for the provision of health care and the information is put in a patient's medical record. Then you don't need OMB clearance. That is the dilemma we were working on there for a long time.

Some of the information we collected was put in the patient's record but it was needed for patient care. We collected information on American Indian race or ancestry because that was a determination whether the person was eligible to receive care from us. That is why we collected that.

Now, what you are asking them to do, the HCFA people to do, is to require the managed care organizations to collect racial data that really isn't needed for medical care. So, basically, if you are asking them to require data, you will have to ask them to get OMB information collection clearance also for it.

DR. IEZZONI: We are leaping ahead a little bit, but -- Barbara?

DR. STARFIELD: Well, I guess that is why the whole discussion started off with this cultural competency because I think the thought is you do need to do cultural competency.

DR. IEZZONI: I think about whether race is put in medical records right now is actually really a big issue. Harvard medical students now where I am are -- it is hard to know whether they are being taught actively not to -- you know, 67 year old black female or 65 year old white male, you know, that is what my generation was taught to put in the medical record.

In fact, there are diseases, especially hematologic diseases and so on, like sickle cell and sickle cell disease that are very -- you know, and epidemiologically related to different origins and so I think that -- why don't we not deal with the OMB clearance issue right now because we still have to decide as a committee whether we want to recommend this. But the recommendation about collecting race and minority data for Medicaid managed care is in response to what we heard at our site visits in Tucson and in Boston and what we have heard over the last year from a lot of people wanting to be able to make sure that historic disparities in the quality of health care were overcome.

So, you know, we as a committee right now need to sit around and talk about whether this is going to be one of our recommendations, but presumably if it is one of our recommendations, it will be dealt with appropriately by, you know, the authorities that have to respond to our recommendations.

Olivia.

DR. CARTER-POKRAS: Just yesterday I got an e-mail from Diane McCook(?), who works in the Health United States at the National Center for Health Statistics, and she was not clear whether the Medicare data are, indeed, available to analyze, other than for whites, blacks and others, because that is what it had been up to 1994. And I understand since 1994, it has been expanded to give us information on Hispanics, American Indians, Alaska Natives and Asian Pacific Islanders.

And you mentioned that the national files are available to do analyses by race, ethnicity, even though race, ethnicity is not shared right now with the plans. Are there currently ongoing activities that are looking at that? Because I understand you said something about the transition for the year 2000 with the computers is taking up a lot of your statistical support time and activity.

Is there anything going on now or any plans to do anything to break up that information by the other groups?

DR. VAN WALKER: Well, the national store itself recognizes the standard Directive 15 categories and has since we did the 1996 study. The real difficulty there was that we didn't have sufficient funds to go back to everyone of the 37 million beneficiaries. So, we had to target the population. In that activity, we used the census Hispanic surname approach and we added to that anyone who was recorded in our records as unknown or other.

Coming out of that, we got about a million improvements to it and, in addition to that, we make episodic passes through SSA's Numadent(?) file, where they collect --

DR. IEZZONI: John, can we just clarify that this is for Medicare?

DR. VAN WALKER: This is for Medicare beneficiaries.

DR. IEZZONI: So, Olivia, it is not for Medicaid.

DR. VAN WALKER: Although there --

DR. IEZZONI: I just want to clarify. Medicare.

DR. CARTER-POKRAS: That is what Diane was asking about was Medicare.

DR. VAN WALKER: There are three or four million dual beneficiaries. So, we have the advantage of that, plus whatever state collections are appropriate for that.

If we go back to the Numadent file, on the Numadent -- the way SSA is still doing business -- and you probably know this even better than I do -- in their working files, spouses are listed with the race of the primary wage earner. So, information tends to disappear.

We have stopped using that in our own collections. We have put programs in place that prevent SSA's exchange with us, which we need to be able to do business and acrete new beneficiaries from actually updating the race issue. And we go back to the SS5 file, which SSA keeps a data set called Numadent. And we look at the beneficiaries themselves said at the time of the enrollment.

This is still a problem file especially for the older beneficiaries, where in many cases SSA clerks looked at the person and made a decision about what they were. We don't really have a way of overcoming that. It cost us, you know, almost $3 million the first time through just to get the improvements that we did and these times there is no real hope that we are going to be able to do this again.

But as new beneficiaries come in, we are getting, obviously, better information and we are going back to the beneficiary source files for it. So, that improvement is going on. We are also having discussions with SSA about -- through the Title II process, which actually generates the exchange record that we use when they modernized this -- and they have been working on modernizing it for most of the decade to actually start carrying through the entire process the real information about the beneficiaries and also about their plans to convert all of their data structures into Directive 15 compliance structures.

They are no longer part of the department, independent even when they were part of the department, but those discussions are progressing. I think everyone recognizes the mutual benefit of that.

DR. CARTER-POKRAS: And the data we already have analyzed, already collected, is that being analyzed? Because Marian Gornick(?) and others at HCFA used to do the analysis and I understand she is retired now. Has anybody picked up on that?

DR. VAN WALKER: I think Paul Aikers(?) is still working on that, Richard Bragg and some other people. These issues don't go away.

DR. MILLMAN: In terms of Medicaid, I was wondering with the SMRF(?) files and efforts to standardize the Medicaid Management Information Systems, is ethnicity a component of those efforts?

DR. VAN WALKER: I know we have summary data. I am not positive that the collections at the atomic(?) beneficiary or client level include race.

PARTICIPANT: Wouldn't that be compliant with the HIPPA --

DR. VAN WALKER: Ah, but HIPPA would change that. HIPPA enrollment will take care of that even if that is a current deficiency, yes.

DR. MILLMAN: That is a general solution to the problem that if you are going to submit any electronic record, enrollment record, you are going to have to have that component. But the place to focus, I think, centralized data collection on Medicaid, will be the Medicaid research files, SMRF, and then there is a lot of vendor activity now in standardizing the Medicaid Management Information System data.

There is an opportunity now to -- through that process to have an effect.

DR. IEZZONI: Kathy.

MS. COLTIN: I was just going to say I think that the HIPPA transaction kind of works the same way as the OPL in that it gives permission -- there is a field there, but I don't believe it is a required field, a mandatory field. So, I think it operates the same way. If you want to collect it, there is a place to put it in the transaction, but it doesn't mandate collecting it.

I had a related question. I thought we had heard from some of the states on the Medicaid side and I was curious whether this was also true in the Medicare eligibility files, that this was an optional field, that beneficiaries did not necessarily have to provide it even if it was on the enrollment form.

Now, is that true for Medicare? I did hear that it was true for some states?

PARTICIPANT: Yes.

MS. COLTIN: I don't know if it was true for all of them.

DR. VAN WALKER: Our source collection is the enrollment process that one goes through for social security benefits. In theory, I suppose, one does not actually have to fill out that form. People not filling out the form is a percentage so small as to not even be registerable. I mean, this is a government form. It is the way you get your social security card. It is the first interaction many people even have the government. Compliance is astronomically high.

Now, whether or not the categories that were available to people at the time they filled it out were sufficient has always been the problem, but that has been changed over time. So, I think the collections now are better. The real problem that we see long term for this is that the SS5, the application for the card, is becoming an historical object. Now we have registration at birth and the racial information that is collected by the state registrars is not available to SSA under the agreements it has for the generation of the numbers to meet IRS and other requirements. So, eventually we are going to have a generation in which we have no direct collection at all.

MR. HANDLER: There is no federal requirement for states to collect birth and death data. However, the National Center for Health Statistics encourages each vital records registrar to collect a certain set of data. It is their decisions whether they do it or not.

Most of the items of information on a standard birth and death certificate as recommended by NCHS are adopted by each state agency and it seems like something parallel to this could be done by HCFA encouraging organizations to do something for the common benefit rather than a requirement.

Now, another thing that is done is that the racial categories on birth and death records mesh very well with what the Census Bureau collects because that is their denominator, rate calculation. With OMB directive changing their racial identifiers for the Census Bureau, it makes sense that that should be the target that everybody shoots for to collect racial data.

It is a decision made locally. There is no requirement and everybody has an agreement to do it because it is for everybody's benefit. Maybe that is the approach.

DR. IEZZONI: Any parting words or warnings or comments for us?

When you even talk about the Y2K problem, there is just this kind of aura of just how big it is, when we hear about it.

Yes?

MS. COLTIN: I have one other point.

It was interesting to hear -- the time at which this data is being collected with regard to Medicare and Medicaid is at enrollment at the time of signing up for eligibility. You were saying that this committee is looking at saying after enrollment and --

DR. IEZZONI: No. I said that we would talk about -- we haven't made any decisions at all yet.

MS. COLTIN: Because I think that tying into a standard data collection process makes a lot more sense, requiring a totally separate process to take place, given where -- that is, it is not required that we are just giving plans permission. If you require a separate process, the likelihood that they will act on that becomes that much less because it is a whole separate process with separate costs.

DR. VAN WALKER: Actually, that is a misunderstanding, at least for Medicare beneficiaries. The collection of the data is at the time one seeks to get a social security card or number.

MS. COLTIN: But it is still signing up for a program, right?

DR. VAN WALKER: Except that there is no benefit tied to it. When you move that to a process in which one is attempting to become a member of a plan to seek a direct benefit, I think the nature of that changes somewhat. And that is certainly a very strong feeling in the Social Security Administration. We come out of that same culture. There is a difference in saying I wish to be enumerated and there is a -- from saying please give me health care.

DR. IEZZONI: Great. All right, good. Thank you very much. That was very informative, very helpful.

Agenda Item: Discussion of Work Plan, Staffing and Time Frame for Completing Subcommittee's Medicaid Managed Care Report

Ann Markus, do you want to come up and join us at the table?

People remember Ann from the breakout session from the last time. Ann works with Sara Rosenbaum at George Washington. And, Ann, I think since we last saw you in September, we have gotten more of you. I think that you have agreed to help us actually write the report that will be coming out of this, year long initiatives that we have been undertaking on Medicaid managed care.

I have been debating what to do to kind of lead us off because I must say that whenever I talk at any length and there are a lot of glazed eyes and I can understand why that would be. So, I always feel a little bit kind of embarrassed doing that because I just, you know -- but I thought it might be appropriate given that a number of folks around the table have not been with us since the beginning, like David. Paul has kind of popped in.

Barbara also wasn't with us at the beginning and just to kind of step back to say where we were, what we thought we were going to do and have that maybe be a launching point for having us make some serious progress today, to basically give Ann advice or tell Ann what we want basically is what needs to kind of come out of this.

Now, Ann, are you here for the morning or can you stay --

MS. MARKUS: I can stay until noon if you wish.

DR. IEZZONI: Okay. So, until the bitter end.

DR. STARFIELD: Can I just ask a question?

I have in my file a four page document --

DR. IEZZONI: I will get to that.

DR. STARFIELD: I just want to know what the date is and whose is it.

DR. IEZZONI: I will get to that. What that is just to anticipate -- there are some of you who don't have that -- is that that -- it is not a transcript. It is typed copies of what do you call it? Flip charts -- that we did the day after the Boston meeting or we heard -- well, we actually had two days and it was the subcommittee members who were able to come brainstorming about what we wanted to be in the final report.

So, that is just typed copies of flip charts. Okay. And it kind of reads like typed copies of flip charts. But actually that was a really good working session and I wish we had taped it because I think we made a -- Paul, you were there. Kathy, I don't remember if you were there. You were there. I thought we made wonderful progress that day and it has kind of slightly been lost in the interim.

But anyway we decided back in July of 1997, I guess, that we wanted to spend a year looking at Medicaid managed care because we were seeing the shifts of states' Medicaid populations into managed care and we were hearing on the hustings concerns about that from a variety of different perspectives, from a different stakeholders. In fact, the people that were most kind of interested in pursuing this are no longer with us or not here today.

One is George Van Amburg, who represented the State of Michigan and the other is Elizabeth Ward, who also represents a state and these two state folks, obviously, had some concerns about what was happening with Medicaid managed care in their states. And I think we have -- George has agreed to review what we do, Carolyn?

MS. RIMES: He will be glad to pitch in.

DR. IEZZONI: He will be glad to pitch in by phone and Elizabeth will, obviously, be involved as well. So, we need to get that state perspective built into this.

Basically, if you go back to the charge of the subcommittee at the time -- and you guys don't have that, but -- so, I will read this to you -- we basically wanted to do four things. No. 1, identify the questions about health and health services delivery raised by the move to Medicaid managed care.

No. 2, specify the data elements and types of information required to address these questions.

No. 3, examine the variety of Medicaid managed care efforts around the country, looking especially at efforts to evaluate the impact of managed care and available data systems.

And then, finally, to produce recommendations about information systems and other data issues related to the monitoring of the effect of Medicaid managed care.

So, that is what we wanted to do. What we have done is over the last year we have held a series of hearings. We have held a couple in Washington. We held one in Tucson, Arizona and we held another in Boston. We have heard from patients and family members. We have heard from providers, nurses and doctors.

We have heard from insurers and Medicaid managed care companies basically. We have heard from state officials. We have heard from researchers. In hearing from folks, we made a special effort to seek out minority issues and also to look at substance abuse and mental health issues.

We have a contract with George Washington, folks who know a lot about Medicaid managed care and are doing other work for other federal agencies around Medicaid managed care, but the specific project that we have George Washington doing is on data, looking at the history of data gathering, looking at the experience across states that we did basically case studies of and then also drafting contract language around data gathering for Medicaid managed care organizations contracting with states.

Our goal is to kind of come up with fairly realistic recommendations, which will now be shaded by the 1997 Balanced Budget Act, which had not been approved at the time that we initially started this and also by QISMC, I think, which was in the works when we started this, but now is very much more kind of formed than it was.

So, that is kind of really briefly what we wanted to do, where we have been. And when we have talked about the report -- and this is where I mentioned that we have had prior working groups to try to figure out what we wanted to do. The one that was most notable was the two days after our Boston meeting, where we sat around a table for about three hours and brainstormed.

Basically what we would like the report to do is to be based on the testimony that we heard and the G.W. work, flowing both of those in together; 20 to 30 pages, preceded by an executive summary clearly stating our recommendations.

There would be appendices to this report, Ann, which would basically be the detailed reports that you guys have done for us. And, Carolyn, I don't know whether we thought about having minutes of some of our meetings being appendices to the report, but we certainly did want to have as an appendix a list of the people who we heard from, so people can have a sense of the breadth and the nature of the folks that we have heard from over the last two years.

So, what we basically thought our final report would contain in these 20 to 30 pages would be briefly to review the current status of Medicaid managed care and the state of data gathering around Medicaid managed care; secondly, to look at the questions of the stakeholders about Medicaid managed care. That is very much what we asked when we heard from people testifying what they wanted to know about Medicaid managed care and so, drawing from what they told us, to come up with what their questions are.

Then looking at what data are available to answer these questions and identifying gaps especially in the data that are available to answer stakeholder questions. Fourthly, to look at barriers to collecting the data to address the gaps and the data available to answer stakeholder questions and then, finally, recommendations based on our understanding of key questions, data required and the barriers to collecting those data.

Do any people who were involved a little bit more over the history of this project -- I guess, Carolyn, you are the one that goes back longest on this because, Kathy, I think you came in kind of early, but not at the very outset and maybe Dale. Are there any other things that you would like to add just to historical context for this? Is that kind of pretty clear representation of --

MR. HITCHCOCK: It was pretty good. I basically came in at the time we were developing the contract for G.W. So, I --

DR. IEZZONI: So, you weren't even there at the beginning. Well, just Carolyn and I were then there at the beginning.

MS. RIMES: Yes, it feels that way. And Jason, to a large extent. I think the only thing I would add is that a lot of the testimony, which Ann is aware of because they were involved early on, was in -- we had people in Washington and then we did two state site visits. So that there was a -- the breadth of this was both government, as well as non-government. A lot of people came into Washington, who I had not expected to volunteer to come in to talk; state legislators from a number of places that were delighted to come in. So, just those sorts of things and we can add that quickly.

DR. IEZZONI: And a stylistic thing about the report -- and, you know, in reading what you submitted to us in September, it was really nice because it would have little quotes from some of your respondents that you would make a point, but then you would give kind of the words of the people as they were responding to you. I think that that is very much what we would like to do here.

You know, as Carolyn said and as I said earlier, we have heard from patients. We heard from their family members. We heard from state legislators. We heard from researchers. We heard from a lot of different people. And to the extent that we can draw kind of just clear summaries of what they had to say, but also to the extent that it is compelling, use their own words, from the actual transcripts of the meetings, I think we would really like to do that to make it real and so it is not as dry as it could potentially be, which is very dry.

Okay. So, yes?

MS. COLTIN: I have no disagreement with anything that you said from the historical perspective. From everything that I remember, you did a wonderful job of summarizing it. I wondered if it would be appropriate at this point, though, to think about what we are planning to do in the future around the quality work group, which -- what I was hoping to do is -- I think the way we are organized it at the brainstorming meeting makes a lot of sense in terms of the way we proceeded through those hearings.

However, from the perspective of the quality work group, it is a cross-cutting issue. It was brought up by advocacy groups. It was brought up by states. It was brought up by plans and I would like to see -- and maybe this is another product, I don't know -- a summary of the issues that relate to quality cutting across all of those various interests and specifically some of the data problems, the questions and the data gaps that relate to information about quality.

So, it is kind of slicing the information a little differently. It is another piece of work. I don't know whether it is part of this or not.

DR. IEZZONI: I think Ann will certainly have to look at what would be the best way to organize things. I think, Kathy, frankly, organizing it by content area and saying these stakeholders are interested in this content area is probably more meaningful and saying here are the stakeholders and here are the issues that they are interested in.

MS. COLTIN: The way it was laid out in the brainstorming session, the materials we have here, was by stakeholder. What are the key issues of these stakeholder groups? What points did they make? What are the data consequences of what it is they want to know and what they can know, given the current state of the art?

I think that does make a lot of sense, too, to know what different groups needs are, cutting across a lot of different issues. But this is a case where we are taking one issue and trying to say what are everybody's needs and how to -- so, it is the same information, but it is sliced differently.

I am not sure that I would go back and reorganize the report by topic area or not.

DR. IEZZONI: Well, let's see. I mean, Ann, I am sure that you as you begin to write this will have a sense of what flows the best.

MS. MARKUS: I don't think it precludes, you know, having a summary of an issue of our stakeholders.

DR. IEZZONI: And, frankly, Kathy, our testifiers focused on quality-related issues. And we didn't ask them about financing or kind of the business aspects of -- even though some of the stakeholders, especially state representatives were concerned about costs and total costs and they wanted to be able to get that, the breadth of stakeholders that we had, the unifying theme was quality access, et cetera.

DR. NEWACHECK: I think part of the question of how we organize the report depends on who the audience is and I don't think we really talked about that so much and I wonder -- and since I wasn't involved in the beginning, I am not quite clear about that. Can you talk, at least a little bit, about who you see the primary sort of target audience for this report?

DR. IEZZONI: Well, I think the historical way that the committee has operated is to submit recommendations to the Secretary. So, the specific person who this would be addressed to would be the Secretary, but I think we are hoping that it might be more broadly useful to people in the policy -- you know, health data policy field. I would imagine -- I mean, Marjorie -- we haven't really talked about a distribution list for this report, but certainly the core data elements had a distribution list that was fairly broad, that had, you know, data policy people, as well as researchers.

So, I think that we would like this to be useful to states as well, I think, on -- Dale.

MR. HITCHCOCK: Wouldn't a key part of it be the sort of model language that we would develop in the report?

DR. IEZZONI: Well, right. That is what I was just going to say. We want this to be something that states could also use. In fact, when we talk about mailing lists or the National Center of NCHS, a lot of it are state people.

MR. HITCHCOCK: Which almost would speak more to a sort of a cover letter to the report to the Secretary saying what it was and letting her know we assumed the audience might be and who we developed the report for.

MS. RIMES: And Paul's point also is fairly broad in terms of how specific you want the recommendations, you know, because my guess is there will be some need to write specific recommendations, which will change who receives the report.

DR. NEWACHECK: There could be recommendations by subset, you know, for this group, for that group.

MS. RIMES: And that is also something to keep in mind as you guys are deliberating.

DR. NEWACHECK: But I would say my own view is that we should not narrowly focus on the Secretary or HCFA or --

DR. IEZZONI: Oh, I agree.

MS. RIMES: This is much broader than just an agency point.

DR. IEZZONI: Oh, I agree.

DR. STARFIELD: So, is the thought that we would -- the subcommittee would make the recommendations to the committee or they should be part of the report? In other words, we would read the report and then make --

DR. IEZZONI: We need to reflect what the people who testified to us told us. You know, one of our goals in doing this -- actually Jim Scanlon was the person, who really made this point, is that the thing that the NCVHS does very well is to give a voice to people who often don't have a voice or to formulate issues from a more diffuse field. So, that is why we went out and we heard from people and what we heard from them will be leading into the recommendations that we will make, but they are our recommendations.

DR. STARFIELD: That is what I mean. The recommendations won't be part of what we expect G.W. to do. We will do them after reading their --

DR. IEZZONI: I would think that what G.W. might do is to synthesize what the field told us they need. We will, from that list, cull out what the recommendations might be.

MS. RIMES: And what you may want to consider is adding just a step after the barrier statement and before the recommendations that was findings or, you know, some kind of sequence like that, which I think then would give you guys the opportunity to do the recommendations.

DR. IEZZONI: Kathy

MS. COLTIN: As you were talking, an idea was kind of forming in my mind about what might make an easy way to meet all of the needs in the organization, that would be if you started out with identifying sort of by stakeholder what their issues are, then organize the issues to talk about them across the stakeholders issue by issue, but have at the front what each group's issues are so that you do preserve that and not go right to the issue organization, but then within the issues, the data that are available, who has it, what the problems are with it, where the gaps are, what would need to be done.

And then in the last section what each stakeholder needs, they often need from a different stakeholder, so then it would be organized again back by stakeholders of what each one needs to do to be able to solve the problem. What is it plans would have to do differently? What is it that states would have to do differently in terms of collecting the data or whatever?

Because most of the time when stakeholders are expressing a need, it is something they need from one of the other stakeholders. So, it is just shuffling it a different way.

DR. NEWACHECK: It sounds like we are all in agreement because it is essentially a needs assessment. We are going to talk about sort of what are the data needs; follow that by what data are available and identify the gaps and then make recommendations. I think Kathy's idea of starting out with some description of the stakeholders' interest and ending with recommendations of the stakeholders. It makes a lot of sense.

DR. MILLMAN: The one topic that seems to be missing is -- and I think it came up both in your site visits and in the G.W. report is not just the collecting of data, but also the ability and capability of analyzing the data and the models for why we want the data because we heard over and over again people thought we have a lot of data. We don't know exactly what to do with it and it is especially an issue with linking Medicaid data and other sorts of public health data.

DR. IEZZONI: Thank you. I was actually going to try to make a proposal at some point of a basic core principle that would guide all of us, that I was hoping that you all would agree to. And that is that we wouldn't recommend any data be collected unless we knew what we were going to do with it, you know, and you heard that a lot in what you wrote and some of your most compelling quotes in your September report are people saying, look, we are drowning in data and we don't know what to do with it.

So, I just think that we ought to have that as an underlying principle. Does the subcommittee agree?

DR. MILLMAN: I think it is not only that but it is also the infrastructure.

DR. IEZZONI: Well, we heard that repeatedly out there actually and that is something that George Van Amburg was very articulate about, that -- and Kathy, also, you know, trying to recruit data analysts, who know how to analyze data. So that will certainly be part of what we will probably have in our list of recommendations.

DR. STARFIELD: I don't have any problem with that but I do see a problem with defining it. It may be that the states think they need only a certain amount of data but the people who are evaluating the program need more data.

DR. IEZZONI: If they can define why they need it, then that is fine.

DR. STARFIELD: As long as you include all the potential users --

DR. IEZZONI: Right. Yes. I would. But I mean it is kind of like you might remember a number of years ago when John Ware(?) got the senior investigator award from AHSR, Barbara, which you got a number of years later, he talked about how when he was a young person going out and designing surveys, the first survey that he designed took six hours to apply, you know, and he just really has learned over time that maybe 20 minutes might be a better time.

So, that is kind of the basic kind of underlying thinking that I have here is that we tend to go and want gobs and gobs and data and we need to make sure that there is at least one stakeholder who has a very specific reason for having that piece of data and knows how they are going to use it and actually maybe to take Mike's point, even has an operational kind of process in place that the data can be used virtually immediately or in a timely fashion.

DR. MILLMAN: Can I provide a little example and it will also provide some information.

HCFA has just approved a model data sharing agreement for state Medicaid agencies to use to be able to share their data with public health agencies and avoid the legal statutory problems. A letter is about to go next week -- it has already gone to Medicaid and it is about to go to public health officials, signed by the administrators of HCFA, HRSA and CDC sort of encouraging them to use the data sharing agreement and vaguely promising some technical assistance to do this.

One of the big problems with the linking of Medicaid and public health data is people don't know why they should want to do this, why they should cooperate across the health departments and the Medicaid agencies, what questions they should be asking. What are the resources that they need in order to do the linkages? What are the sort of informatics issues? What are the policy and turf issues?

This came up in -- there were a lot of really good examples in the G.W. report. So, one of the things that is needed is, you know, how do we begin this process of providing the capability of states to identify the questions and be able to manipulate the data to answer those questions?

DR. IEZZONI: Olivia.

DR. CARTER-POKRAS: I attended a conference, a symposium, last week in Minnesota to focus on data issues and what was unusual was that they actually had managed care plans and organizations participating because usually it is just the researchers, the people who are collecting the data, who are in those symposiums. But they brought up a couple of issues and I don't know whether these were addressed in your meetings.

Oh, okay, one was the legality of collecting -- because it was focusing on racial and ethnic data -- the legality of collecting racial and ethnic data. The managed care plans were concerned that this was illegal to collect and they needed to be convinced otherwise. The other issue was confidentiality and privacy, which we were kind of taken aback by because we assume that confidentiality and privacy is an issue for anything that you collect data on and not just race, ethnicity. But they were particularly concerned about the confidentiality and privacy of collecting racial and ethnic data by managed care plans.

So, these were two issues that were brought up.

DR. IEZZONI: We heard that, too. We actually heard -- you will see in our little kind of -- I don't know. Was this handed out generally to --

DR. CARTER-POKRAS: We just got it.

MR. HANDLER: On the afternoon of November 4th, next week, I have to go to the Census Bureau to speak before an advisory committee. They asked me to answer two questions. If you are going to make use of American Indian data coming from the year 2000 census, they asked what programs of your agency will make use of the information and then what decisions will those programs make, based on the information that they get.

Those are the two things they asked me to address. Maybe you could follow that same kind of logical reasoning here. What are the programs you are trying to collect information for and what are you trying to accomplish? What will the data do for you if you have it?

DR. IEZZONI: Okay. At this point, the question is how to proceed because we need to give Ann guidance. I think you have probably already gotten some guidance, you know, going back to the transcripts and culling out along these categories. Since not all of you were able to be in Tucson or Phoenix, wherever -- yes, Arizona -- Phoenix, thank you -- thanks, Kathy. That is embarrassing. It was less than a year ago and I have already forgotten where I was.

DR. STARFIELD: We thought we were going to Tucson.

DR. IEZZONI: Actually, it was not a good trip. My wheelchair got so damaged by the airline that they had to rent another for me because I simply -- it was a bad trip.

But, anyway, Phoenix, a number of you were not able to be in Phoenix and were not able to be at the Boston meeting and you probably have not read through the detailed verbatim transcripts of what happened. So, the question is how to proceed at this point. You know, whether we should go back over the points that were raised on the -- you know, the day after the Boston meeting by people and see whether they resonate and whether they kind of sound reasonable to people, whether folks could clarify or focus a little bit more on -- how would those of you who have not been that involved in the process think would be the most productive way to proceed at this point?

I know. It is hard.

DR. STARFIELD: I think maybe just wait for the report.

MS. COLTIN: I am wondering if there isn't a middle ground. In other words, if we had a detailed outline of the report, you know, based on the framework that we just talked about and sort of under each of them kind of key points that you had pulled out of the transcripts that we could look at before you get into the prose version of it, that might provide something that is in a more summarized form that those that weren't involved could look at and react to as kind of a middle point.

DR. IEZZONI: Okay. I actually agree with both of you. My frustration is when are we going to have a chance to talk about this together? You know, this is the age old problem for this subcommittee is that I doubt that Ann would be able to have such an outline for November 12.

I doubt that. So, okay, so that removes that possibility because we are --

DR. NEWACHECK: Lisa, before you go on, it wouldn't necessarily have to be like a ten page annotated outline. It could be a one or two page outline that would make sure that we are all in agreement about the basic framework of the report.

DR. IEZZONI: We can maybe -- I don't know, Ann, we can talk off line about that. Ann is a student and she -- you know, I don't know to what extent she has exams and stuff coming up. So, I don't want to -- so, maybe on the 12th we could at least have a broad outline, but I think that going through the transcript and annotating it with what we heard from the different stakeholders is going to take a little bit longer.

MS. MARKUS: I have a question. When you refer to the transcripts, are you talking about the transcripts for 1997 and 1998?

DR. IEZZONI: Yes, the verbatim transcripts of every meeting that we have had about this topic.

MS. MARKUS: Are these on line? I have a couple, but I don't --

MS. RIMES: You have a couple and we will have to get back and pull from Mary the rest of it and I will go through my files.

MS. GREENBERG: On the Web? You put the transcripts up of --

DR. IEZZONI: The verbatims?

PARTICIPANT: They should be there.

MS. RIMES: Yes, because we had pulled them.

DR. IEZZONI: Okay.

DR. NEWACHECK: Lisa, I think one of the problems the last time around was that we waited a long time between iterations of this and then we found we were going down the wrong track and I think it is important that this be iterative.

Hopefully, at least by the end of this day, we would have a fairly good outline in our own minds and, hopefully, something on paper for the general report and that could be just fleshed out a little bit maybe and sent back to us for comments and then go on from there, just to be sure we are going in the right direction.

DR. IEZZONI: So, you are thinking that by the end of today we will have an outline. What more of an outline than what we have been talking about thus far?

DR. NEWACHECK: Well, something on paper that fills in some of the gaps. I mean, we have talked about sort of general content areas, but we haven't talked about specifics, like, for example, what are the themes that came out of the -- what are the main themes that came out of the stakeholders' discussion?

DR. IEZZONI: What Barbara is saying is that since she wasn't there, she can't contribute to that discussion and neither can David. We need to use their time productively. That is the frustration that we are having.

I guess the problem is that we don't have anything scheduled between November 12 and January 22, when we already know what we are going to be doing on January 22 and it is not this.

MS. COLTIN: Lisa, if we could review a broad outline on the 12th, couldn't we have a conference call? At whatever date that a more detailed outline could be provided to us, if we could have that and then maybe five or seven days later have a conference call to give us some time to go through it.

DR. IEZZONI: That is a good idea.

MS. COLTIN: It shouldn't take more than a couple of hours, I would think and we would have something in front of us.

DR. IEZZONI: Why don't we right now actually get some conference call dates on our calendars, Carolyn. That would also give you, Ann, a sense of when we would want things by and Dale was correct that the draft contract language is going to be part of the final report, but I don't think we need to wait to have the draft contract language to get the majority of the report written, frankly, because I think the draft contract will be an appendix primarily.

MS. MARKUS: And the contract language is going through a parallel --

DR. IEZZONI: Exactly. It is going through a parallel process as we speak. So, I don't want to hold up the report for that to happen is what I am trying to say. So, Carolyn, why don't we -- we can't do it this minute because some of us don't have our calendars, but I meant that, you know, Carolyn would take the lead on doing a screen and why don't we get a couple of conference calls together. Why don't we get one together for early December and then for maybe -- maybe that might be a little too soon, maybe the second week -- not too soon? Okay. Early December and then maybe one for early January as well.

MS. MARKUS: I will be out of the country in January.

DR. IEZZONI: The whole month of January. Okay.

MS. MARKUS: Visitation research.

DR. IEZZONI: Visitation research. Ann will be out of the country. That is good, Ann. We will let you do that. Europe probably.

MS. MARKUS: Yes, Switzerland.

DR. IEZZONI: Switzerland. Your home country?

MS. MARKUS: Yes.

DR. IEZZONI: So, maybe -- so, we might have this little hiatus during that month of getting the final part of the report written.

I hate to say another conference call at the end of December. When are you leaving?

MS. MARKUS: The 23rd.

DR. IEZZONI: The 23rd?

MS. MARKUS: Yes.

DR. IEZZONI: Okay. Why don't we schedule a conference call, Carolyn, for early December and then we will regroup after that and see how much more needs to be done. So, maybe the first week in December and then maybe towards the middle of December.

So, we would have to agree to do a very quick turnaround on our part of when Ann would get us the draft. Okay. But you will have a draft broad outline for us to respond to on the 12th?

MS. MARKUS: Yes.

DR. IEZZONI: And we do have a breakout session of our entire subcommittee at 3:30 on the 12th, I think. So, Ann, if you could come to that, that would be -- it is November 12, right? Okay. And it is Washington. Yes? At 3:30. Okay. We have confirmed that then, to have an outline.

MS. MARKUS: Okay.

DR. NEWACHECK: Do we have a timetable for the sort of a draft report and a final report at this point?

DR. IEZZONI: Well, that is what we are trying to kind of eke towards, yes.

When do you think that the draft contract language process will have wound itself out? Because there are a lot of people involved in that from a variety of different agencies.

MS. MARKUS: Well, we haven't even held the first meeting yet. It is actually a pretty lengthy process because it has to go through several, you know, iterations and rewriting and stuff like that. So, I think it is going to be a long process, but it doesn't preclude us from, you know, using draft language.

It is how you want to arrange them and how -- you know, what makes some sense and things like that, but if you want to just pull out pieces of it, it is feasible in terms of this report.

DR. IEZZONI: Marjorie, when is our February meeting, what date?

MS. GREENBERG: Well, I think we decided yesterday the full committee would meet the 3rd and the 4th.

DR. IEZZONI: Of February. Okay.

MS. GREENBERG: The privacy subcommittee is meeting the 2nd.

DR. IEZZONI: All right. But it is the first week in February and, Ann, you will be back when? Will you be back the first week in February?

MS. MARKUS: Yes.

DR. IEZZONI: Because what might be good is for us to have as our breakout at that meeting the first week in February kind of a final going over --

PARTICIPANT: We have a meeting the 22nd of January.

DR. IEZZONI: Yes, but that is to talk about the post acute care. And Ann is going to be out of the country then.

So, maybe what we could try to do is have a good draft ready by the beginning of December that we will comment on in conference calls and we will then revise that draft before she leaves on the 23rd of December and then we will have the opportunity -- what we should do maybe, Carolyn, is schedule a conference call for us for January, early January, to talk about recommendations coming from the report and we can just take really good notes and maybe even take the telephone call so Ann could have that information.

MS. GREENBERG: I think if you are actually going to try to deliberate recommendations in a conference call, then, you know, it is something we should publish in the Federal Register and offer opportunity for public participation. Or if you are just, you know, looking over outlines and things like that, that is fine, but you are apt to do that in a conference call rather than in a subcommittee meeting.

DR. IEZZONI: That is a good idea. So, we should get the conference call scheduled for some time in early January, book it in the Federal Register and then --

MR. HITCHCOCK: Have we done that before or is this -- do we have precedent logistically for doing this?

MS. GREENBERG: Actually, we attempted to do it one other time. I don't know if it actually worked logistically, but this is something that is done by other advisory committees. Usually we try not to use conference calls or e-mail for actual deliberation but I think, you know, when we need to, then we need to open it up as part of the process.

I don't know if anyone would participate, you know.

PARTICIPANT: We would have to notify them on the number to call in.

MS. GREENBERG: No. What happens is we give a number. If you are interested in participating, call this number to make the arrangements and then we -- there is a finite number of people we can probably accommodate but -- so that we don't just put the number in the Federal Register. That would be totally -- we couldn't -- you know, that would be uncontrollable, but we give a contact number to our offices and then we, you know, allocate the numbers as we get requests.

DR. IEZZONI: So, we talk about recommendations and then -- but Carolyn, maybe -- staff, i.e., Carolyn and Dale, could formulate -- once we have the conference calls, you could begin to draft some text around the recommendations that then we could have for subcommittee review at the February breakout session, along with kind of final comments on the report.

So, what we would try to do is get the report kind of finalized maybe immediately after the February meeting. Is something like this -- we are going to have to take it in front of the full committee, Marjorie?

MS. GREENBERG: Oh, yes, definitely.

DR. IEZZONI: So, that would go in front of the full committee then in March? Is there a March meeting?

MS. GREENBERG: Actually, if we are meeting February 2nd to 4th, we are not meeting again until June.

DR. STARFIELD: That is probably about right.

MS. GREENBERG: Could I just clarify this in my mind that early December conference call, you are going to have an outline to talk --

DR. IEZZONI: We are having a broad outline on November 12. And we will have actually either a very, very detailed outline or a draft text for the early December --

MS. GREENBERG: Oh, okay.

DR. IEZZONI: Then Ann will revise based on our comments before she leaves and give us a revised version when she leaves on the 23rd. Then we will talk about recommendations in our January conference call. We will further go over them at our February breakout session. And it kind of seems like a shame to have to wait all the way until June to bring it in front of the full committee. But it seems like that will have to be what will happen.

MS. GREENBERG: It has to, obviously, go to the full committee. It can go to them for review and consideration.

DR. IEZZONI: As early as we have it.

MS. GREENBERG: Yes. And I guess by the February meeting you would be able to tell them pretty much what you are thinking in terms of -- but I think something of this magnitude, you know, you can't just do through the mail. I mean, you really have to do it at a full committee meeting.

DR. IEZZONI: I am not going to be at the June meeting. I am going to be in Switzerland on a long planned trip.

MS. GREENBERG: Well, we will have to think about that, but it doesn't sound like it is going to be ready to present at the February meeting.

DR. IEZZONI: The final report will not be ready to present at the February meeting, but probably a very good, almost final draft will be.

MS. GREENBERG: With your recommendations --

DR. STARFIELD: The recommendations, it didn't strike me that was going to be so easy to come up with recommendations.

DR. IEZZONI: Maybe we should schedule two conference calls in January to talk about recommendations.

MS. GREENBERG: January 22nd is a full day meeting? And the full day is going to be post acute care?

DR. IEZZONI: We really need to -- okay. Well, why don't we say that such as it is, Paul, that is kind of the timetable that we are operating under and it isn't -- the latter part of it -- this will be a long gap of months, actually, literally that the report will be lying fallow basically.

Why don't we see -- you know, Barbara, I agree that it might take some time to do recommendations, but let's see how it works and let's leave open the possibility maybe, Marjorie, that if we have a really good draft, that we could present that at the February meeting. And if the full committee feels okay with that, they could then say to the executive committee we would allow you to kind of do the final because it will be nice to get this out to the states and other people.

MS. GREENBERG: It is going to be recommendations and everything. You might be able to do that. I think we will have to see.

DR. IEZZONI: Okay. So, let's really try to get a really good draft going on this. All right.

Well, did we just finish our Medicare managed care business?

DR. NEWACHECK: I wonder how we are going to integrate in information that comes or that came after our workshops or the hearings that we had in Boston and Phoenix. Particularly, what I am thinking about is the new caps Medicaid consumer survey that will be mandated as part of the HEATUS process, which I think is going to address a lot of the issues that we have concerns about. I think it should be an important part of our report and I want to make sure that we integrate it in fully.

There wasn't much discussion of that at -- flip chart days or --

PARTICIPANT: There wasn't any.

DR. NEWACHECK: This, I think, is going to be a major -- have a major effect on our report recommendations as well.

DR. IEZZONI: That is one of the reasons I am so excited about Ann's doing this because, you are on top of all of that. Right? And the Balanced Budget Act stuff and the QISMC stuff, you know, all of that -- the QISMC is really a big deal as well. So, I think that all of that does need to be built in once we start talking about gaps. We need to say, well, but there are plans afoot for filling this particular gap.

So, it may end up that our recommendation is just to support full implementation of plans that have already been put into play.

MS. COLTIN: Actually, I know it is extremely late, given the November meeting, but I am wondering whether it might not be a good idea to try to bring someone into talk a little bit at our breakout or even at the full meeting -- we had some extra time yesterday -- about QISMC and, you know, maybe even about the Medicaid caps issue.

MS. GREENBERG: Didn't your subcommittee hear about the caps at the September 17th meeting?

DR. IEZZONI: We heard about the health of seniors, about the --

[Multiple discussions.]

MS. GREENBERG: When were you suggesting that this be done?

MS. COLTIN: Well, I am trying to think about how we could actually have something that would then be on the record that could be incorporated into the report. So, that is why I wondered if there was a slot on the November agenda, whether it is at our breakout or whether it is part of the full meeting, to have, you know, an update on that so that that presentation and discussion would be on record and could be part of the report.

DR. NEWACHECK: They wouldn't have to be long.

DR. IEZZONI: Marjorie, while you were on your call yesterday, the subcommittee or the executive committee was talking about the second day.

MS. GREENBERG: Okay. That is what I missed.

DR. IEZZONI: And we were saying that it looked a little thin around the edges, that there was time that we could probably use to do other things. So, we were kind of casting around in our minds for what could be done during that time. I agree with Kathy. I think that this is a full committee issue.

MS. GREENBERG: Lynette, could you come to the table?

DR. ARAKI: I got off the phone this morning with Jim because, as you recall --

DR. IEZZONI: We talked about having --

DR. ARAKI: -- Satcher or Dr. Lurie or Nancy Ann Min or Jeff Copeland(?). So, he is pursuing that now.

DR. IEZZONI: Well, I assumed that that wouldn't succeed. That was part of my assumption.

DR. ARAKI: He was going to probably forget about HCFA and let the HCFA person deal with that but he was certainly going to try and call Satcher this morning.

DR. IEZZONI: We were trying to think of how to fill some of the time the second day of the November meeting, November 13th.

MS. GREENBERG: This is what, in the report backs, you thought there was too much time for that, subcommittee reporting back?

DR. CARTER-POKRAS: Actually, I had talked to Dr. Lurie and she was interested in meeting with the National Committee but her secretary is supposed to get back to me about her availability. So, we haven't heard anything. I was going to run up and see --

DR. ARAKI: Jim was going to put a call through to her this morning. So, actually --

DR. CARTER-POKRAS: But last Friday I personally talked to her and mentioned the fact the committee might be interested in meeting and greeting --

DR. IEZZONI: A lot of us know Nicki Lurie. So, yes.

DR. STARFIELD: I think we have got time for both.

DR. IEZZONI: I do, too. It would be maybe a 45 minute presentation from the QISMC people on Medicaid caps.

Can we see whether that would be a possibility? These are HCFA.

DR. ARAKI: The slot would be after -- any time from 10:45 on because we have got set presentations from 9:15 and --

[Multiple discussions.]

DR. CARTER-POKRAS: -- because I have also offered the possibility of also helping out with the presentation about the data needs for the initiative to eliminate disparities because she is Dr. Satcher's point person for that.

DR. ARAKI: The data disparities one, that is set, with Tony DeAngelo and Jack Anderson, right?

DR. CARTER-POKRAS: Right, right, but Jack Anderson realizes that Dr. Lurie may also want to take that time with him.

DR. ARAKI: So, you are saying she may actually come there or --

DR. CARTER-POKRAS: Well, we were trying to work out some time with the secretary. So, I haven't heard yet from the secretary about her availability.

DR. ARAKI: It would probably work better if she would come on the 13th, anyway.

DR. CARTER-POKRAS: On the 13th, at what time?

DR. ARAKI: Because the rest of the time -- otherwise it is pushing -- it would be after 10:30; 10:45 is when we have a break. Then we can put the rest of the committee business further on down the list.

DR. CARTER-POKRAS: She has a new secretary. So, I am going to go back up because I haven't gotten a phone call back.

DR. ARAKI: You should probably coordinate through Jim because he already made the initial contact.

DR. CARTER-POKRAS: Okay.

MS. GREENBERG: When should Carolyn try to get the -- Carolyn or some other person --

DR. ARAKI: That is also that same slot would be --

MS. RIMES: I will get you some phone numbers but -- do you want me to do an initial screen in HCFA?

DR. ARAKI: Well, you know the data -- the issues to raise to kind of --

DR. IEZZONI: We basically want a presentation on QISMC and on Medicaid caps. So, there is probably -- is there anybody in the audience who knows who it should be?

Yes. Do you want to come to the microphone and introduce yourself?

MR. MC KAY: My name is Hunter McKay. I am from ASPE in the Disability and Aging Policy. I think the person you want is Maureen Booth from the National Academy of State Health Policy. She has been a consultant on QISMC and worked with Trish McTaggert in the development of QISMC -- Trish would be great, too, but Maureen is really the -- focuses just on quality issues and development of QISMC and QARI(?) and all the --

DR. IEZZONI: All right. Ann, it would be nice to have the QISMC and Medicaid caps on record before we brought it into the report, but, nonetheless, I think that it needs -- that your knowledge, your and Sara and your group's knowledge about what is currently out there in either legislative or regulatory fashion --

PARTICIPANT: It is on the Web.

DR. IEZZONI: -- should be considered as part of this when you start writing the report.

PARTICIPANT: The QISMC is on the Web.

PARTICIPANT: The QISMC interim standards, they went on the Web September --

PARTICIPANT: Yes, they have been on awhile.

DR. IEZZONI: You know, we should have the QISMC - - Marjorie, can we have this QISMC material in our briefing book maybe for -- can we have it in our briefing book for the November meeting so everybody can see that? Because I think that --

MS. GREENBERG: If we can have it by the 4th.

PARTICIPANT: All we have to do is pull it down.

MS. GREENBERG: If you want us to pull it off, just tell us where to find it.

MS. COLTIN: I have it with me -- I had it with me. I took it off the Web.

DR. IEZZONI: It is time for our break and it also feels like it is time to maybe let Ann take off. Are there --

PARTICIPANT: She may want to now.

DR. IEZZONI: I know. She needs to start working. She needs to make this outline for us for November 12th.

Are there any other issues that we feel that we need Ann here for, subcommittee members or anybody?

[There was no response.]

Okay. Why don't we say that we have officially stopped our conversation about Medicaid managed care. And, Ann, we will have a very broad draft outline or whatever you can get for us. If it is more detailed, we would be happy, for the November 12th breakout.

So, why don't we take a break right now and maybe, Barbara, when we come back, do you want to talk about the Healthy People 2010?

[Brief recess.]

DR. IEZZONI: Why don't we get started again. Does anybody know where Barbara and Olivia went? Paul is still here. So, we have four people, which isn't a quorum, but -- Barbara --

MS. GREENBERG: What was the next thing on the agenda?

DR. IEZZONI: Well, we were going to talk about the 2010, but Barbara asked that we defer that until she and Olivia had a chance to just huddle about it briefly. So, what I thought we would do now is go over the subcommittee charge.

MS. GREENBERG: Okay.

Agenda Item: Review Subcommittee Charge

DR. IEZZONI: So why don't we, while we are waiting for Barbara to return -- does everybody have -- did you give everybody a copy of the subcommittee charge?

MS. RIMES: Yes. What this is is everybody's comments consolidated into one thing and the changes are either in capital letters or in parentheses. We can go through them, but they are primarily what I would call wording changes.

Attached to this, however, is what Dan did, which was to revise -- kind of like a reordering. It is what is on top, Barbara -- a reordering of some of the priorities and I attached that also so if anybody wanted to talk about it in terms of placing priorities or ordering them in terms of priorities, that is an option.

That is it.

DR. IEZZONI: Why don't we take a minute or two since this is the first that we are seeing this revised version and just look at it. Does everybody in the audience have a copy of this?

MS. RIMES: Yes, I did that.

DR. IEZZONI: Okay. Why don't I open the floor for comments, comments that people have.

Kathy, you have got your pen out.

MS. COLTIN: These are mostly just grammatical.

DR. IEZZONI: Okay. David, do you have -- Paul? I liked Dan Friedman's reordering of it. So, I would like to see it reordered as Dan has suggested.

Barbara.

DR. STARFIELD: I really haven't had a chance it in detail. It looks good.

I have some specific wording changes to suggest or some of the suggestions; in particular, the section that now is the continuum of care. It is on page 5. But my comments are for page 6. On page 6, it says the subcommittee will and then -- now, since we are focused on the continuum of care, it seemed to me that the first bullet should -- which talks about continuum of care, it shouldn't identify especially nursing homes, but should say the continuum of care from something -- outpatient care to inpatient care to nursing homes to, et cetera, and that if we are talking about continuum, we really mean the continuum. We don't mean to start only with nursing homes.

I think if we make it broader, it makes it more relevant for all population groups, children as well as the elderly.

DR. IEZZONI: I think we did intend to focus initially on --

DR. STARFIELD: Well, it doesn't say the elderly.

DR. IEZZONI: -- chronic care.

DR. STARFIELD: Well, but children have chronic care and not in nursing homes.

DR. IEZZONI: That is right. I am just going to the previous page where there is the title for that.

DR. STARFIELD: I have no problem with the title.

DR. IEZZONI: Okay.

DR. STARFIELD: But a chronic care setting for a child with chronic illness could be a home and usually is a home.

DR. IEZZONI: Why don't we start with homes actually, such as the home, community and instead of saying especially, say such as, because that broadens it. Long term care hospitals only happen in places that had the old TB hospitals, like Massachusetts.

So, we can leave that in but let's start with homes and communities and --

PARTICIPANT: And institutions.

DR. IEZZONI: Institutional care settings.

DR. NEWACHECK: Isn't this particular topic, though, related to Medicare only in this context or not?

[Multiple discussions.]

DR. IEZZONI: No, we didn't mean for it to -- we wanted it to include private sector issues, as well as --

DR. NEWACHECK: Okay. I think that is a good -- I agree.

MS. RIMES: So, home, community and institution.

DR. IEZZONI: Maybe that does need to be clarified because whenever people see long term care, they always think nursing homes --

DR. NEWACHECK: Well, the preface to this begins with the Medicare mandate. So, I had always assumed this was just for the Medicare population.

DR. IEZZONI: No.

DR. NEWACHECK: I think a broadened perspective would be good, but I think we probably should change --

DR. IEZZONI: Why don't we get rid of that first sentence and start with given explosive costs to the health care sector, private and public plans are contemplating ways to control --

[Multiple discussions.]

-- care of chronic illnesses or chronic conditions actually instead of illnesses. That is a very good point, Paul.

And Medicare leads the next paragraph as well, doesn't it? What we could say is no coherent vision or policy exists for generating across these diverse settings for either the public or the private sector because I think we need to bring the private sector in here. Then you could say, for example --

MS. GREENBERG: For example, right.

DR. IEZZONI: Are there any other surveys, other the Medicare beneficiary survey, are there any comparable surveys for Medicaid?

DR. NEWACHECK: No, I don't think so. In fact, one of the big problems is that we don't have good data on even the size of the institutionalized population that is not Medicare or that is not SSI for that matter.

MS. RIMES: And that isn't large enough of a sample to get anything on that. And it is a major issue.

DR. NEWACHECK: The last data that I am aware of on children, for example, is from the 1990 census.

DR. STARFIELD: 1980 census?

DR. NEWACHECK: 1990.

DR. STARFIELD: Let me make one more comment. I think this is fine as it is, but as we work on these things, I think we may find that some of these are related and for our work plans, we might want to combine them. I mean, I don't think we should redo the document now.

DR. IEZZONI: All right. So, I am hearing -- Marjorie?

MS. GREENBERG: I have just one comment and I guess it comes out of the sensitivities raised yesterday at the Data Council meeting and I feel a little guilty even mentioning it because I did go over this language with Dan through e-mail in the very first part, the population-based data or the framework for health statistics in 2010, but I know there is a concern that this be seen -- and actually it is a concerned shared by NCHS, that it be seen as broader than just the vision for NCHS and that really the Data Council is -- and maybe Dale could weigh in here, too, but, you know, the Data Council is a partner in this activity as well and I think that the way it reads is so NCHS-centered -- admittedly, NCHS has been the kind of driving force here, but you could say maybe just the subcommittee will collaborate with the National Center for Health Statistics and the HHS Data Council in developing the 21st Century vision for health statistics.

DR. IEZZONI: That sounds good.

MS. GREENBERG: And then maybe semi-colon and further work with NCHS on specifying the 21st vision for the center.

DR. IEZZONI: We probably don't need that additional phrase since you have already said that we are going to be working with NCHS.

MS. GREENBERG: Right. Maybe you can just leave that out.

DR. IEZZONI: Just leave it there.

MS. GREENBERG: Exactly. And then the work group will accomplish this charge through collaborative activities with NCHS and the Data Council. Do you think that is all right? I think it is better including blah, blah, and the committee --

DR. STARFIELD: So, we take out NCHS twice in the first --

MS. GREENBERG: Well, you wouldn't take NCHS out initially.

DR. STARFIELD: It is three times in the first sentence.

MS. GREENBERG: Right. I guess the first sentence would just say, "The subcommittee will collaborate with the National Center for Health Statistics and the HHS Data Council in developing the 21st Century vision for health statistics." Period. And then, "The work group will accomplish this charge through collaborative activities with NCHS and the Data Council, including..."

DR. IEZZONI: So, this is really our work group and our quality of care work group is at the end of -- the way that it is organized right now, but we are going to reorganize --

PARTICIPANT: We are going to reorganize it.

DR. IEZZONI: Kathy, is there anything that you would like to add to that?

[Multiple discussions.]

MS. COLTIN: I think we need to incorporate the two other items that I pointed out.

DR. IEZZONI: Carolyn, Kathy is talking about the quality of care work group.

MS. COLTIN: I think we need to incorporate the two items that we talked about at the Executive Committee yesterday and that also came out of our last meeting of this group, which was that we would also try to focus in on both the quality issues that come out of the Medicare managed care evaluation, sort of looking at those separately and saying are there any unique issues that are raised in the context of that report and that particular population and that we would also be doing the same thing in conjunction with the work going on around post acute settings and looking at what are the specific quality issues that come up as we start looking broadly at data issues and information needs about post acute care.

DR. IEZZONI: So, Carolyn, do you feel that you could craft language around that or, Kathy, would you be able to in tandem with --

MS. RIMES: I will give it a shot and we can work out e-mail, Kathy --

[Multiple discussions.]

MS. COLTIN: What is here is fine.

DR. IEZZONI: It looks like, David -- have you got some editorial suggestions?

DR. TAKEUCHI: I will pass them on later.

PARTICIPANT: It makes sense to almost put them as sub-bullets under the first bullet.

PARTICIPANT: That is what I was -- that was across the public and private sectors and for diverse populations and you could say, you know, for example, we will be starting with, you know, looking at the Medicaid population and the population cared for in post acute settings.

DR. IEZZONI: All right. Are we at a position where -- Paul. I am sorry. I didn't --

DR. NEWACHECK: Enhancing national surveys, which begins on page 3 and continues onto page 4, there was some additional wording suggested on racial and ethnic populations. I think the original intent of this was to be fairly general and broad and not to target any particular group. I think that while we care about racial and ethnic populations, I think these changes have made it look like this recommendation is only about that and that was not the intent.

I would like to change the wording in some way so that we can mention that but not make that be -- look like the exclusive focus of the effort.

MS. RIMES: Can you help me on where it is?

DR. NEWACHECK: It is on the top of page 4.

MS. RIMES: That is fine. Absolutely.

DR. STARFIELD: Why don't we take out that -- I mean, we have got it in a subsequent --

DR. IEZZONI: Do you know who -- I think Hortensia felt strongly about this language. So, why don't we take this language and move it to a place later in this paragraph so the language is still there, but the paragraph leads with the more general issues?

DR. NEWACHECK: Well, it is a pretty short paragraph. What about if we keep in the second point, oversampling for disadvantaged vulnerable groups of the population, which is really the same point and take out the first change. We are covering it but we are not making it be the focus of it.

DR. STARFIELD: I think it is included if we leave in that disadvantaged, vulnerable, and we have got another work plan on race, ethnicity.

DR. IEZZONI: Carolyn, you have a sense of how strongly the feelings were held about this. Do you think that this change will suit?

MS. RIMES: I think if we leave it with the oversampling, it will be acceptable.

DR. IEZZONI: But we don't specify minorities in the oversampling?

DR. NEWACHECK: Well, what if we said oversampling for disadvantaged/vulnerable groups, including minorities and take out "of the population"?

DR. IEZZONI: Okay. I agree with Paul's overall sense of that.

Any other -- people are coming up with really good comments. Anything else?

Okay. Why don't we see if we can vote on -- approve this charge and work plan pending revisions that Carolyn will be making?

MS. RIMES: You guys, if you have editorial things or whatever, you know, feel free.

DR. IEZZONI: But basically what we would like to have is an action item at the November 13th presentation of our subcommittee is approval by the full committee of our charge and work plan --

MS. GREENBERG: Which we will have in the agenda book.

DR. IEZZONI: Which we will have in the agenda book. So, Carolyn, you will have to get Marjorie the most up-to-date version of that.

Marjorie, I noticed that the one we handed out yesterday was like five generations ago, which isn't your fault. I mean, it is --

MS. RIMES: There have been a number of iterations.

MS. GREENBERG: It is just they took it off the Web site.

MS. RIMES: It is really old.

MS. GREENBERG: What we need is the correct one.

DR. IEZZONI: So, can we have a vote? Is there a motion to approve this?

DR. NEWACHECK: Move approval.

DR. IEZZONI: Second?

DR. STARFIELD: Second.

DR. IEZZONI: All right. A vote for that. All in favor?

Okay. So, we have approved this charge and work plan pending the revisions that we just discussed, that Carolyn will be making and we will present this to the full committee on November 13th for their approval.

Maybe, Carolyn, what we should do is at least have a copy of the final version available to us for our breakout session on the 12th in case there is a word or two --

MS. GREENBERG: Won't it be in the agenda book?

DR. IEZZONI: Sure. Yes. Well, Carolyn will have to do the revisions and get it to you for the agenda book.

Okay. Lynette has checked with Joan Turek, who was supposed to present to us her outline for the report on the insular territories. Joan won't be available until 1:30 and we have an hour and a half until then and it would be nice to use this time productively.

Barbara, are you prepared to talk about the 2010 --

DR. STARFIELD: We haven't got the revision yet. It is in the works, but not --

DR. IEZZONI: Well, why don't I hand this around then. This is something that Lynette made me aware of yesterday and we gave Barbara a copy of it and that is that -- let me pass this around.

DR. STARFIELD: Are we taking a break for lunch or are we going to try to finish --

DR. IEZZONI: Yes, we are going to take a break for lunch because --

DR. STARFIELD: About when?

DR. IEZZONI: Well, maybe right after this unless Olivia comes back with the 2010 stuff because -- Paul, have you changed your reservation on your plane?

DR. NEWACHECK: No.

DR. IEZZONI: You weren't able to. Because I want to get people out of here, who can maybe catch an slightly earlier flight to return home.

Okay. Basically, the Healthy People folks are trying to develop a small set of indicators called leading health indicators and this will build on the work that they have been doing for Healthy People 2010. As you all know, because we talked about it at our last meeting, there have been hearings that have been held around the country, including one that will be held next Friday in Atlanta, about Health People and this specific initiative, which is trying to develop the leading health indicators.

They are going to be having a meeting in D.C. on January 21 and 22. As our subcommittee members remember, we do have a meeting on January 22nd already planned, which is going to be a very important day. We are going to be kind of educating each other about the issues dealing with chronic conditions and post acute care.

So, I would hope that none of the subcommittee members want to not be at the subcommittee meeting on the 22nd, but the question is, Lynette, whether they would welcome any subcommittee members, who could only attend on the 21st.

Certainly, we will have to ask the full committee whether there are other members, who would be able to be at both days.

DR. ARAKI: There are two things. There is that pre-planning meeting, which --

DR. IEZZONI: November 6th, which is a week from today, which I wasn't expecting. Is there anybody who would want to be able to go a week --

MS. COLTIN: I already committed to be on it via conference call.

DR. IEZZONI: Great.

DR. STARFIELD: Oh, it is a conference call.

MS. COLTIN: Well, no, it is a meeting, not a conference call, but they agreed to put me on the speaker phone to participate because they wanted managed care -- I couldn't stay. I am in Atlanta the two days before, but I couldn't stay.

DR. STARFIELD: It is possible I can go. I just --

DR. IEZZONI: It is in Atlanta.

DR. STARFIELD: Oh, that is in Atlanta next week?

DR. IEZZONI: Yes. Oh, we were getting excited, Barbara. I mean, Barbara as our representative would be great, but --

MS. GREENBERG: Would you want to participate on a conference call. I don't know if they would offer that but if they are already offering it to one person --

DR. STARFIELD: Yes. I mean, the reason I can't come is I have got class in the afternoon, but I could be in a conference call.

DR. IEZZONI: Okay.

Well, next week is short notice and Kathy is going to be on that. So, the question is about the 21st and 22nd. I think that the topic of this falls better within our subcommittee than either of the other two subcommittees. So, that is why it would be nice to have a presence in this.

DR. ARAKI: Well, you asked whether or not they would be willing to just accept one day. I think so. I think they would.

MS. GREENBERG: The only thing is that if this is kind of a cumulative discussion, you could be missing the most important day.

I wonder if there is anybody else on the committee, who might be interested. I mean, I could see John Lumpkin possibly having an interest.

DR. IEZZONI: Yes, and we don't know how much work he is going to have after the elections as he kept reminding us yesterday at the Executive Committee meeting.

DR. ARAKI: Well, he got a copy of this, but I mean we could pursue -- you want me to ask him specifically? I will.

DR. IEZZONI: I think, why don't we find out whether John would like to do the two days or whether anybody else on the committee would like to do the two days, but I think we should also find out what the schedule is going to be because sometimes the second day, they stop early, you know, and they might start early.

I don't know what time our meeting is scheduled to start on the 22nd, but it may be -- is this meeting going to be here in the Hubert Humphrey Building?

DR. ARAKI: I don't know. I will have to find out the site. There was no agenda. It is going to be in Washington, D.C. I would imagine it would -- Kathy, were you planning to participate on the 21st or --

MS. COLTIN: I wasn't planning to, but I could.

DR. STARFIELD: The notice says that was an attached list of attendees, but it didn't come. That is critical to have the proposed agenda, as well as what time it is going to start. Our meeting is going to start at 9 o'clock, no earlier, is that right, or 10 o'clock?

DR. IEZZONI: Well, I am not sure because I thought we were going to try to allow people to fly in that day. So, I thought maybe 9:30ish. Is that what we were thinking, Carolyn?

MS. RIMES: 9:30 or 10:00.

DR. IEZZONI: Yes, 9:30, 10:00.

MR. HITCHCOCK: Do we know, is this supposed to be like a revision of what they published in the MMRW a decade or so ago, which was sort of like a small set of health indicators? Is that --

MS. GREENBERG: You mean, the 21, Committee 21?

MR. HITCHCOCK: Yes, I guess so.

MS. GREENBERG: I am not really sure. We both have done some work on key indicators at NCHS and, frankly, I don't know how much this is all being coordinated.

DR. IEZZONI: Well, why don't we do this. I think that we don't have enough information about this right now. As Barbara pointed out, we don't have the list of attendees to have a sense of the kind of people that they want at the table, even though they talk about -- you know, what was interesting to me, Barbara, was the third paragraph here. Look at the third paragraph. It is state and local health departments, national organizations, such as NCQA, federal health care agencies. There is nothing about provider groups, you know, people who actually think about health, of providing the health care.

MR. SUMME: These people are all on this floor. So, do you want me to go and see if I can get somebody and bring them in?

DR. IEZZONI: Yes. That was kind of a striking omission from my point of view that there weren't people on the U.S. Preventive Health Task Force, which I think Hal Sox(?) is going to be reconvening under AHCPR's auspices, I think.

DR. STARFIELD: I think David Atkins from AHCPR told me -- I think he is co-chairing that, isn't he?

PARTICIPANT: He is the lead staffer at AHCPR.

DR. IEZZONI: Okay. He is the staffer. I read on the --

DR. STARFIELD: He told me he was co-chairing it. I thought he told me that.

DR. IEZZONI: I have got the AHCPR bulletin in my suitcase. I can look at it because that is where I saw it. It is on the last page. They were announcing that, but it was kind of striking to me that they didn't include people like that in this list of folks to come to this meeting.

DR. ARAKI: He just went across there because --

DR. IEZZONI: So, apart from we are waiting for, I guess, Olivia to come back with this letter for the 2010 and we are waiting for Joan Turek to show up, are there any other kind of agenda items that -- you know, maybe what we could do is talk to people about what we are thinking about for the meeting on January 22nd and just get people's input.

MS. COLTIN: I think that is a good idea.

DR. IEZZONI: Kathy, you were on the conference call. Do you want to summarize what you felt we heard and Carolyn can chime in and then I will chime in.

MS. COLTIN: Well, I thought what we were trying to do at least for the morning, if not the whole day, was to try to bring the level of understanding of all of the members of the committee up to some common baseline about what some of the data activities are in the different post acute settings. So, it would be primarily an educational focus in the morning. I don't know if you thought that would be the whole day.

DR. IEZZONI: I think we have to talk in the afternoon about what we are going to do.

MS. COLTIN: Okay. And that the afternoon then would be focused more on trying to further define our work plan and what we thought are the issues where we could make a contribution.

DR. IEZZONI: That is right. That is what my recollection is as well.

A lot of this is being led by Vince because Vince -- this is his area of expertise and Vince had a whole bunch of folks that he was suggesting as potential speakers

PARTICIPANT: [Comment off microphone.]

DR. IEZZONI: No, I don't want to, not if he is sick. I think that that -- my point was going to be that this is an interesting field because a lot of the people who know a lot about the different areas also have very definite vested interests, including financial vested interests in some of these areas. So, you know, people who developed particular methods that they are now out there selling or -- and so, we were trying to make sure that we came up with people who would be perceived as the most objective sources of information, but it is challenging.

So, Carolyn, Vince gave you a bunch of recommendations for a series of people to come in and speak to us. Have you been able to think about that and can you maybe tell the subcommittee about the types of people or folks that we are thinking about?

MS. RIMES: I am searching for neutrality in this, not necessarily -- I work with a lot of the people that have the financial and emotionally vested interests in post acute care and payment mechanisms. I also work with a lot of the researchers and primarily at this point I am going to emphasize Corbin Liu(?) and some of the other people that are very able to present an objective viewpoint of the long term care that is standardly thought of in terms of pose acute, as well as some of the other issues that are coming up now.

Chris Murtagh from New York, I have contacted and we are going to check on.

DR. IEZZONI: There was a woman from Maine.

MS. RIMES: I am blocking at the moment, but I have finally a phone number. So, we are slowly beginning to do this, but it will be a neutral presentation. There is a possibility that ASPE might be interested in also setting up some of the people to come down to talk with a little bit more vested interest. So, it may be an interesting day.

DR. IEZZONI: Well, if we started off with the objective folks and then went into the people, who have the vested interests because, frankly, they will often have the most knowledge about technical aspects --

MS. RIMES: Some of the best knowledge.

DR. IEZZONI: Yes.

MS. RIMES: It could be interesting. I am trying to merge it with ASPE's needs, too, so we can cut down on the fodder between ASPE and HCFA, but we will see.

DR. IEZZONI: How do people think -- and there will be an explicit inclusion of kids and this is not going to be all Medicare. It is going to be really cutting across private, public sectors all age groups.

MS. RIMES: I am trying to get Corbin to present as much as possible because he can do an overview that is clean.

MS. COLTIN: Or Nancy Gage, I think, also who works with him also does a lot on this.

MS. RIMES: There are some really good people over there that will be fine.

DR. NEWACHECK: Can we have someone address the issue or a panel address the issue of survey data for the institutionalized population? We have surveys of nursing home residents, but when you get outside of nursing homes, there is very little information out there. In fact, the 1990 census that I mentioned earlier that collects data is the only source of data on the institutionalized population of children. It just identifies the name of the facility and nothing else about the characteristics of the population, why they are there, you know, whether there is a health problem or something else. And you have to sort of work backwards by looking at homes and schools for the mentally handicapped to figure out if that is a health- related facility, for example.

There is no way to identify the population. As I recall, the last real survey of the institutionalized population generally, going beyond nursing homes, was back in like 1977 or something like that.

MS. RIMES: It has been a long time. There is nothing that has been modified that gets into what I call the gray areas. You are perfectly correct.

DR. NEWACHECK: But it seems like to be able to address some of these issues for some of the population -- for Medicare, we can probably do it, but --

MS. RIMES: Be careful what you ask for.

DR. NEWACHECK: We have the data for the elderly population to address some of these issues, but for the younger population, I don't think we even have the basic data to even know who the population is, much less whether they are getting the right services or whether they should be there, that sort of thing.

MS. RIMES: And even for the elderly, we don't know because there are so many different kinds of institutions. It really is a gray area. Let me see what I can do on that. That is a very good point.

MS. COLTIN: And the other point is, you know, what do we mean by institutionalized because, you know, are they in there for two weeks or are they in there for the rest of their life? We have very different and very diverse populations within these settings as well.

DR. IEZZONI: Let's interrupt this briefly and maybe return to it. Dale has managed to care up a person with a whole bunch of reading material.

MR. HITCHCOCK: This is Linda Bailey from the Office of Disease Prevention and Health Promotion and Linda is, as you can see, it is a stressed out day in her office and Linda has very graciously volunteered to come and explain what she can about the handout that we were looking at about the workshop on leading indicators.

There are apparently several projects involved here but Linda seems to know quite a bit about each of them, at least enough to fill us in. I don't know whether you want to ask Linda questions or just let Linda speak awhile on the topic.

DR. IEZZONI: Yes. Linda, can you tell us a little bit about this meeting, this initiative that you are starting in Atlanta, I guess, next week and then will be pursuing in the week of 21st, 22nd in Washington, trying to develop a small set of leading health indicators, how that meshes with what has been done before and who is going to be at the table?

Agenda Item: Leading Health Indicators

MS. BAILEY: Sure. It probably makes more sense for me just to take a step back from that meeting. I am Linda Bailey. I am a senior advisor in the Office of Disease Prevention and Health Promotion and I graduated from Hopkins. So, I recognize you, Dr. Starfield, and some other members of the committee.

We have been for the last couple of years engaged in the development of new health objectives for the nation, basically Healthy People 2010, and as part of that process we went out to people, who use Healthy People 2010 objectives and to those who don't use Healthy People and asked them why do you or don't you use it. What do you like about it? What needs to be changed? How can we get all of you to use these national health objectives and to make them operational for you in whatever activity that you engage in.

What we heard from states and locals was they liked having many, many objectives because at that level, they take the national document, use it as a menu and pick out which of these objectives they want in their state or local community plan.

What we heard from managed care and from the business community was we don't use Healthy People because it is over 300 objectives. That is way too many for us to use in a meaningful way and if you want us to use Healthy People 2010, then you need to set some priorities.

In response to that in state health departments, local health departments, the people we primarily partner with, so we need to be responsive to them and rather than putting Healthy People on a diet, we needed to be responsive to their need to have very detailed objectives in specific areas.

However, we want our partnerships with business and managed care to grow. So, we needed to be responsive to them and the idea of leading health indicators, a set of 20 or less health indicators for the nation, is really our response to managed care and business, as well as a way of making Healthy People meaningful to the general public. We are talking about 20 or less health indicators, things that are written in common, plain English that don't have a lot of technical jargon in them, that are understandable to people who don't do health full time, maybe who don't do health at all, something, hopefully, that would be of interest to USA Today to publish once a year if we have data that often.

It has really been very exciting within the department, as well as outside the department to think about this set. The book that we cut it in as our sales pitch to all of you is sort of a background piece that we did internally here at HHS. What we did was put together a committee of about 20 people and Suzanne Stoyber(?) really led this effort and is the person who conceptualized leading health indicators when she was our acting director and ODPHP. Basically, what she said was we need a set that is going to be meaningful to people and that sets priorities in health for the nation that everybody agrees are the big ticket items.

So, Suzanne asked Dr. Michael McGinnis to come back to the department and he chaired a work group that I was on, two people in ASPE were on and every agency that is represented in Healthy People networks and Healthy People were on. So, internally, we looked at how can we put together this set. We developed a couple of models.

We thought about how it would be linked with Healthy People in general and we put together this book. We sent the project to the Institute of Medicine and they are doing a committee that is going to give us technical guidance on what they think the leading health indicators should be.

That first draft report will be available at the end of December. From September through December we are taking comments on Healthy People in general and one other thing I brought with me is a two-page call for comments on leading health indicators and we would absolutely love to get input from the committee on what they think ought to be included either as a health topic or as actual indicators in this set of 20 or so. That would be very helpful. And I will leave those for distribution to the committee.

The other thing we have tried to do with leading health indicators is to look across departments at other related activity. One of the related activities is at CDC and that is the meeting that this draft refers to on November 4th to 6th. CDC has a project with states called the Assessment Initiative and that is developing indicators at the state level with managed care and with state health departments that we want to bring into the leading health indicator idea.

A similar project is going on with HRSA, the Health Resources and Services Agency, and they are looking at county level measures and developing a county index. So, rather than have a number of, you know, different projects within the department, each of them as a separate purpose, but we just want to make sure they are coordinated, as well. So, for the leading health indicators project, we have been in touch with CDC, with their Assessment Initiative. We are working with them and hearing about their progress.

With HRSA, we have been in touch with them as well about this county level process. We have been having regional meetings on Healthy People and the goals for the nation and at each meeting, we have had special groups on leading health indicators. And we have been getting some very interesting comments from people. What we have been hearing is they want this set to be very broad, that they don't want it to just reflect a biomedical model, but more an Evan Stoddard's determinant of health kind of model, where we look at health very broadly, where we reflect the social influences on health, as well as community level measures.

They want to make sure substance abuse, mental health, environment are covered in this set. They want to make sure that when we look at prevention, we are not just looking at primary prevention, but secondary and tertiary care. That has really come across clearly at the public comments that we have been getting on Healthy People in general, that people are very concerned about quality of life. They are very concerned about people's ability to function if they have disabilities and that those issues are very important as considerations in this.

I am sorry if I went on too long but --

DR. IEZZONI: No, that was actually very, very helpful, very exciting, too.

MS. BAILEY: And there will be a public testimony day on the IOM report and that is scheduled for January 28th here in Washington, D.C. So, their report will be out end of December. It would be great to get comment from the committee as well.

DR. STARFIELD: Which IOM report?

MS. BAILEY: IOM is doing a report for us on leading health indicators. So, they will be giving us scientific input on what they think the set should be. We expect two or more sets to be submitted by them I think on December 30th or 31st. That report -- people have access to that report through our Healthy People Web site or through the IOM Web site. I can give you the address of our Healthy People Web site if you like.

It is HTTP:\\Health.Web.Gov\HealthyPeople.

DR. IEZZONI: I guess the immediate question was whether somebody from -- Kathy, I guess, is going to be participating via conference call --

MS. COLTIN: I am actually going to be -- I didn't realize the 4th and 5th that was listed here was the same 4th and 5th that I am at because we are one of the -- Massachusetts is one of the states that is part of the health assessment initiatives. So, I will be participating on the 4th and 5th in person and the 6th by telephone.

MS. BAILEY: And at the regional meeting that we did in Philadelphia for Healthy People, Deborah Kline- Walker(?) from Massachusetts talked a little bit about the Assessment Initiative in the state. So, we had that input to our regional meeting.

DR. IEZZONI: I guess the question was whether somebody from the National Committee would like to be at the meeting on January 21st and 22nd. We already have a meeting scheduled for the 22nd. So, we were wondering what your agenda was going to be for the 21st and the 22nd, whether being there for one day would be adequate or whether --

MS. BAILEY: You know, I don't know about that 21st and 22nd meeting. I am sorry. That is really CDC's meeting. I can get information if that is helpful to the committee and e-mail it to you, Dale, if that is one way to distribute it.

DR. IEZZONI: Maybe we can hear about it at the November meeting.

Barbara, you had a question?

DR. STARFIELD: I did have just very basically a comment. I haven't read this. It looks terrific. We are about to discuss after lunch some suggestions that the committee might make about the 2010 objectives that has to do mostly, although not solely, with disparities with population groups.

DR. IEZZONI: Would you be able to do it now because maybe Linda could stay?

DR. STARFIELD: We could do it now.

PARTICIPANT: [Comment off microphone.]

DR. STARFIELD: I just thought you might be interested in hearing it.

MS. BAILEY: I would be. I didn't know if Debbie was due to come in at a certain time.

DR. CARTER-POKRAS: Actually, I had sent her the agenda. There has been some confusion that, hopefully, we will be able to figure out because she is staff to the work group for Statistics for the 21st Century, but not staff to this subcommittee on populations. So, she hasn't been getting all the e-mails and the information about the subcommittee meetings and conference calls and that sort of thing.

I did e-mail her and let her know about the agenda, but there is no Healthy People item on the agenda. So, I could certainly run down and see if she is available.

DR. IEZZONI: Are there any other questions for Linda?

PARTICIPANT: [Comment off microphone.]

DR. IEZZONI: We asked that and she doesn't know. It is a CDC meeting. So, Dale is going to try to find out about that.

This was very, very helpful. Thank you for the red book. I know that people will look at it and be very interested in it.

DR. STARFIELD: We should find out when we are going to discuss the 2010 objectives, so if you can come, you might --

MS. BAILEY: And I can let Debbie know, too.

DR. CARTER-POKRAS: Oh, great. That is important because I didn't have a chance to run by her office to even see if she wanted to participate.

DR. IEZZONI: Olivia, we didn't know whether a document was going to be ready today to review. So, that is why it is not on the agenda.

Why don't --

DR. STARFIELD: I think we should go to lunch.

DR. IEZZONI: That is what I was just going to say. I was just going to say why don't we finish talking about the January 22nd meeting. This is a subcommittee specific thing, in case anybody had any other suggestions for Carolyn. Paul had a great suggestion about looking at survey data.

Are there any other suggestions for the January 22nd meeting? Kathy?

MS. COLTIN: Well, it was kind of triggered by Paul's suggestion on survey data. It sort of gets into the issue of surveys that are developed in the private sector that then get mandated publicly, like caps or actually they were funded publicly but I mean the development occurred, you know, outside of government as opposed to a lot of the national surveys because, for instance, the Picker(?) Institute now has surveys that they have developed for home care for patients to report on their experiences in home care, to report on their experiences in rehab hospitals and extended care facilities.

We have actually used some of those surveys with our members so we have some experience with it. But I know that the one on home care we actually piggybacked on an initiative that was done by the university health system consortium and maybe someone from there might want to come and talk about their experience with that survey for home care or, you know, but you could talk with someone at Picker and get some suggestions.

DR. IEZZONI: That is a really good suggestion.

DR. IEZZONI: Okay. So, this January 22nd meeting is going to be pretty interesting, I think. The goal was to try to synthesize it to create maybe a five page summary of it that we would give to the full committee because we are concerned that the full committee needs to be educated about this as well. These kind of issues are often marginalized and we don't want them to be. I think people need to understand the importance of them.

Okay. Why don't we take a lunch break then and reconvene at 1 o'clock. Olivia is out of the room but could you -- whoever sees her, tell her that we are going to reconvene at 1:00 and at 1 o'clock we will talk about the letter to Linda Myers that Hortensia, Olivia and Barbara have been working on, that we would like to bring as an action item to the full committee at the November meeting.

Then at 1:30, Joan Turek will come and speak to us about the insular areas report. So, then we can get out as soon as we feel that we have completed our work after that.

Are there any other issues that you think need to be talked about by us? No. Okay. So, we will come back at 1 o'clock.

MS. GREENBERG: Thanks, Dale, that was impressive.

[Whereupon, at 12:23 p.m., the meeting was recessed, to reconvene at 1:05 p.m., the same afternoon, October 30, 1998.]

AFTERNOON SESSION [1:05 p.m.]

DR. IEZZONI: Why don't we get started, Barbara. I ran into Olivia in the hall and told her that we were going to be starting at 1:00. Hopefully, she will be back in a second. But maybe what you could do is you could just tell the committee what you did with Olivia and Hortensia and then, you know, if you would like to give us -- the letter is self-explanatory -- if you would like to point any specific things in it, you could do that.

Agenda Item: Healthy People 2010

DR. STARFIELD: Yes, well, I want Olivia to be here because I want to thank her for an incredible --

DR. IEZZONI: Well, she will be here. She will be here.

DR. STARFIELD: Remind me if I forget.

DR. IEZZONI: We will. But why don't we start.

DR. STARFIELD: Yes. This all has a three day history, this letter. We had a conference call the day before yesterday and represented on the conference call were Hortensia Amaro and Olivia, David Brown, who was representing Ron Manderscheid, and Aaron Handler was there and I am not sure whether Beatrice Rouse from SAMHSA was. I think not. She was supposed to be there. She wasn't there.

We talked for about, I guess, about three quarters of an hour. But preceding that phone call, Hortensia and I had shared a draft of our recommendations and, lo and behold, they were virtually identical. I mean, the overlap was just incredible and that greatly facilitated our coming to a consensus on the conference call.

Then to give you a little bit of a background on Objectives 2010, because I doubt that any of you have or not many of you have gone through that tome. It was incredible. I have gone through that tome and it is all reduced to about four pages here on the table. So, any questions you have I can --

I haven't compared it, however, with 2000 Objectives, so I really don't know, but I know there are big differences and not all the chapters are the same, although I can't tell you which ones right now are different. But one thing that I will highlight later is that in the Year 2000 Objectives there was a separate chapter on -- I don't recall what it was called, data or nation, something like that, and that is not there now. There are a few objectives that do have to do with data, but they are somewhere in the public health infrastructure chapter and I think lose a lot of their force that way, so we could actually have a recommendation on that.

In our recommendations, Hortensia's and mine, and also in the conference call, we focused primarily on vulnerable populations, on the special populations, race, ethnicity and SES data. However, we didn't limit our attention to that. We also have considered some issues of general population relevance and you will see those in here.

I am going to give you -- well, I guess most of the background actually is here. I want to highlight just a few things. First of all, there are, I think, about 225 non-developmental objectives and the rest of the 300 are developmental. I guess the groups were instructed to provide baseline data wherever possible and the baseline data was to include race, ethnicity, SES data, gender and disability where relevant.

The chapters were not all consistent in the extent to which they did so. I found them really quite uneven in their coverage of baseline data, even when I know baseline data are available on the issue, it wasn't there in many cases. The chapters differed enormously in the extent to which they even addressed disparities, even though that is a major goal. That is the second goal.

There were two goals for the objectives, disparities reduction being the second. They didn't all address disparities and where they did disparities, they were almost always race, ethnicity objectives and not SES objectives. There were only really -- I have forgotten how many. You have it in the letter there. Very few actually addressed both race, ethnicity and SES disparities.

So, with that as a background, you have these recommendations. A couple of things I would say about this draft. First of all, it is a draft and it is rough in places. So, I hope we don't get bogged down in wording. I mean, I know that some things have to be fine tuned here in terms of the wording.

Second of all, it is my thought that this ought to be sent as we send everything from the committee to the Secretary, with a copy to Linda Myers. I guess the comments are supposed to go to Linda Myers, but I think that our role is to recommend these to the Secretary with notification to Linda Myers.

Shall we let everybody look through it?

DR. IEZZONI: I think people have been reading it and have read it.

DR. STARFIELD: Okay. Then let's go over the objectives, the recommendations one by one.

DR. IEZZONI: Here you have an opportunity to thank Olivia.

DR. STARFIELD: Oh, yes. I want to thank you for yeoman -- yeo-woman's job. In three days you put this together. It is very impressive. Thank you for doing it.

Okay. I have just given the introduction. I have just given the background. I have been marking time until you got here. Now we will go over the recommendations.

The first recommendation is that baseline and monitoring data be provided by race, ethnicity and SES. At a minimum the race ethnicity categories specified in the OMB Directive 15 or its revision should be used.

Important differences in access to quality of services has been documented in the past. The Department is encouraged to provide baseline and monitoring data by these factors for the approximately 82 objectives, which focus on program or governmental activities. Now, let me just explain what that means.

There are something like 82 objectives that are -- that you don't get off surveys and items of information depend on x percent of schools should have programs for health education or something like that, you know, or states should pass laws. And that is not something that lends itself easily to the standard ways of looking at race, ethnicity and SES disparities.

However, geocoding is certainly possible. I mean, you could -- better make sure that schools in the different areas distinguish by different race, ethnicity and SES characteristics be monitored that way. And we have a specific recommendation. You will see it later.

If data are not available for a particular objective, this should become a developmental objective. Each developmental objective should be accompanied by plans to obtain data by race, ethnicity and SES. Right now, almost none of the developmental objectives even mention disparity.

Then you have got justification of that on the second page, which I have basically given you about the unevenness across the different chapters. The second recommendation is that there be a separate chapter on information systems and data needs and there we thought that probably the Data Council should be responsible for doing that.

In addition, the Data Council might be asked to collaborate with the Healthy People Steering Committee to expand on Healthy People 2010 data-related objectives of which there are only two, and coordinate the development and implementation of plans to obtain baseline and monitoring data by race, ethnicity and SES in each of the chapters.

The third recommendation is that the most likely source of data be given for each objective. It is not now always given. And in some cases, secondary sources of data are used. Source of data, for example, in the heart disease data, they give as a reference a report of the American Heart Association as baseline data. So, it should say primary data, the most likely primary source of data be given for each objective.

The fourth recommendation is that geocoding be used when individual data on race, ethnicity or SES are not available.

The fifth objective is that there should be a separate section, perhaps an appendix for each major data source, including information on this periodicity inclusion of data on race, ethnicity, SES and gender and, where relevant, disability and the quality of the data with regard to representatives reliability, validity. What did you tell me, Olivia -- somebody told me over 200 sources --

DR. CARTER-POKRAS: There are over 200 data sources that support Healthy People --

DR. STARFIELD: -- like the primary care survey. I hadn't heard of it.

The sixth recommendation, the last one, is that the objectives relating to primary care be revised to reflect current knowledge. Much more is known about the importance of specific aspects of primary care and systematic disparities by race, ethnicity and SES and, yet, little of this is represented in the objectives. Measures of mental health in primary care settings are also needed.

I mean, it was really striking to me that areas, which have obvious disparities by race, ethnicity and by SES are done -- like mental health, like substance abuse aren't even mentioned as disparities in there.

Anyway, that is it.

DR. IEZZONI: Comments?

DR. NEWACHECK: I think this is great, Barbara. I haven't looked at it really thoroughly, but I think it really covers some important issues. I wondered about a couple of things, though.

One is should there be a definition or clarification as to what socioeconomic status means here because they were very specific about race, ethnicity in reference to OMB Directive 15, but SES, I think, means different things to different people. In fact, a lot of the references here are to income, but sometimes to education and other things. So, I think it would be helpful to clarify whether you mean strictly income or you mean something more than that in terms of measures of SES?

DR. STARFIELD: The most available one is income, at least for the surveys.

DR. NEWACHECK: Right. Maybe it should say that. Otherwise, it is sort of vague and not clear.

The other question I had was about this recommendation for -- in geocoding, how would that actually be implemented? Were you thinking you would identify areas with high rates of poverty or minority populations and compare them to areas that are the reverse?

DR. STARFIELD: Or it is easiest when you look at the program data, you know, the schools, the states. You can look at the achievement of objectives by schools according to which area they are located in. And you have, of course, got all that information from census.

DR. NEWACHECK: I understand that but how would it be presented in this context? I guess I am not --

DR. CARTER-POKRAS: It could be possibly broken out, for instance, instead of as we currently have some things broken out where they say low income persons, low income children under the age of five when we look at lead levels. You could have, perhaps, broken out by communities with poverty rates -- with a proportion of the population living in poverty being greater than 50 percent or something. I don't know.

DR. NEWACHECK: So, we would define that as sort of a standard kind of term for that like we have medically underserved areas or something like that and we --

PARTICIPANT: That is right.

DR. STARFIELD: That actually came up this morning with HCFA. They said, you know, they don't collect the individual data but they do geocoding. Now, I actually don't know whether they do that. They could do it.

DR. NEWACHECK: I think that is a big step but I think it would be an important and valuable one if we could do it.

DR. CARTER-POKRAS: As far as the socioeconomic status measures, it really depends on the data systems. Some of them, for instance, vital statistics, we have got education and we have occupation, but we don't have income for mortality So, one size fits all measure is difficult since we have, you know, more than 200 data systems that we are going to depend on for monitoring.

DR. STARFIELD: What we could say is income or where not available, education and/or occupation.

DR. NEWACHECK: I think that would be a good improvement.

DR. IEZZONI: Are there any additional things that you would like to see in the letter, Paul, relating to the geocoding issue that you just discussed, anything more specific?

DR. NEWACHECK: Well, I think it would be helpful to be more specific here as well. I don't have any suggested wording but to me it is -- I understand the concept of geocoding, but I don't quite understand how -- after our discussion, I do, but from reading this, I didn't have a good understanding of what -- how it would actually be applied in practice for the purposes of these objectives.

DR. STARFIELD: Be glad to do that. I would appreciate it now that you understand it if you could --

DR. NEWACHECK: Okay.

DR. IEZZONI: David, do you have any thoughts, comments?

DR. TAKEUCHI: [Comment off microphone.]

DR. IEZZONI: Kathy.

MS. COLTIN: I found the fourth paragraph on the first page just a little bit confusing because the first sentence talks about topic areas with no mention of baseline data on either race, ethnicity or income. Then the last sentence, which talks about areas where there is a well- known relationship, also has both of those absent. I thought those belonged together --

DR. STARFIELD: Yes, that is a -- I have to work on that. That is one of the rough areas.

MS. COLTIN: It seemed redundant and I saw they were different areas and I thought, well, shouldn't it be part of the same --

DR. STARFIELD: Yes. Those have to be worked on.

Let me say that, you know, the chapters have an introductory section and in some of them, there is a separate subsection in that introduction on disparities and some chapters are better than others and some don't have that subsection at all. But this paragraph rephrases --

[Multiple discussions.]

I will clarify that, Kathy.

DR. IEZZONI: Barbara, I also want to congratulate you and Hortensia and Olivia on doing this. I mean, an inch worth of documents that you went through.

I wonder whether for recommendation 6, you talk about much more is known about the importance of specific aspects of primary care and systematic disparities by race and ethnicity. In your verbal you just said and it is well- known that there are disparities by race and ethnicity, et cetera, in substance abuse and mental health.

I wonder whether you could give some examples about the specific aspects of primary care, you know, just to back up your claim.

DR. STARFIELD: Of course, there are systematic differences in access.

DR. IEZZONI: But just say that then or just to give examples because I think that if you are going to make assertions that it would be useful, given that you know the literature, even give some citations. I mean, this could be a letter that has references at the bottom of it, you know, and around substance abuse and mental health, I think that would really give a sense of this is not just your ax that your grinding. You are basing this on evidence.

DR. STARFIELD: I don't have an ax to grind in substance abuse or mental health.

DR. IEZZONI: Right, but, you know, I am just saying that it would be nice to cite evidence in support of your suggestion.

I think I -- the reference to ICD-10 in the last paragraph, I assume that you mean the ICD-10 for mortality coding because isn't ICD-10CM going to be what is going to be used for morbidity coding?

DR. STARFIELD: This came up late in the conference call and it was pointed out, correctly so, that when you set the standards for reporting of disparities of these things, there is shifting with changes in the classifications and that is what we meant the other categories and the age adjustment standard. You know, when you have a baseline and you have an update, you have got to obviously do something about that.

Now, in terms of the ICD-10 codes, I actually forgot -- Olivia, do you remember what it was that was specifically mentioned?

DR. CARTER-POKRAS: Actually, it was one of the issues that the National Center for Health Statistics is presenting at the regional meetings is something they will have to grapple with over the next few years because there will be a transition period.

DR. IEZZONI: I understand that. It is just I am reacting to the ICD term versus ICD-10CM.

DR. CARTER-POKRAS: They were talking in particular about mortality at this point.

DR. IEZZONI: Because if 10 is mortality --

DR. CARTER-POKRAS: A lot of Healthy People 2010 objectives are based on vital statistics.

DR. IEZZONI: That is right. But I think that you also want to include in here that you will be moving to 10CM for morbidity reporting. So, you just need to be clear that in 1999, you will start mortality reporting by 10, but then several years thereafter you will start the morbidity reporting within the time frame of this 2010 and that is theoretically going to be in 10CM, which is going to look very different than ICD-9CM.

DR. STARFIELD: Why don't we just add and 10CM.

DR. IEZZONI: Yes. Okay.

DR. STARFIELD: What I would like to do is to just fool around with the wording a little bit and take suggestions. Now, the question is --

DR. IEZZONI: Dale, do you have --

MR. HITCHCOCK: Yes, just a couple of comments. I think just for transition and general readability, I think in the first paragraph, the very last, where it says "text period," if you could just say something like "and we have developed the following recommendations," to lead into the recommendations that we have developed because it is --

DR. CARTER-POKRAS: I am sorry, Dale. Where are you?

MR. HITCHCOCK: On the very first paragraph.

DR. STARFIELD: We need a transition sentence that says recommendations are pursuant to -- so, please, can I have all your comments.

MR. HITCHCOCK: My other comment is I am worried about the level of detail here, if this is to go to the Secretary. I mean, I --

DR. STARFIELD: You are talking about the justifications.

MR. HITCHCOCK: Yes.

DR. STARFIELD: Shall we just take that out?

MR. HITCHCOCK: I don't know. This paragraph on the second page at the top where it is -- wow, try to read that. Maybe it is just my failing eyesight as an old geezer here, but I have --

DR. STARFIELD: Or the other thing we can do is we can append it to the letter.

DR. IEZZONI: I think it is nice because you have got the recommendations in bold face. So, people who don't want to read the details can go to the bold face. I think it is nice to have the detail in here, Barbara, because people are always saying be specific, be specific and you are.

MR. HITCHCOCK: When we send something to the Secretary, we are usually not this specific.

DR. IEZZONI: But this is also going to -- this is also the response and going to Healthy People. So, we need to have the detail in there.

MR. HITCHCOCK: Which to me argues -- I think this is from arguing from Jim over the years, I think this to me argues that the justification should be in some sort of an appendix or in tabular form or something if you really want the Secretary to read this.

DR. IEZZONI: Well, strategically, I guess we were supposed to submit comments to Linda Myers. Is that who we should continue to submit it to with a cc: to the Secretary? Is that considered bad form?

DR. CARTER-POKRAS: Debbie actually walked in. So, I don't know if she has any thoughts about this. She can come in as a resource person. And actually, Debbie also had some thoughts as to the kinds of issues she was hoping that the National Committee might consider in helping their comments.

DEBBIE: There are a couple of things. We have just begun to receive paper comments in addition to those that have been places electronically on the Web site and when Olivia asked me to join you this afternoon, I just quickly punched in, you know, data as the key word search and came up with 28 comments that appear. One of the things about this structure and the reason why the yellow pages of health is sort of like a legal document with line numbers is that our contractor is actually juxtaposing these comments exactly where they would appear in the document.

So, to the extent that you identify, you know, page, objective, line and, although, as Dale points out, that may be too much in a body of a letter, but, you know, to sort of guide us, otherwise, what literally I was doing yesterday with the first paper comments that had come that weren't specific and one of them began on the subject of physical activity and nutrition, but actually focused primarily on heart disease, you know, where to place that comment in this document really becomes then a matter of staff having to annotate the public comment to place it in the right place because all of the paper comments are being incorporated into the public comment database. So, your comments along with all others would be there. When the next person plugs in the word "data systems," they will get your comment and you will get the preview of it. And you can go on to the Web site and pull up the whole comment.

So, one of my guiding pieces of advice would be to be very detailed about this so that there is no subjective judgment on staff's part about placing this comment where it actually belongs.

DR. IEZZONI: Okay. That is great guidance.

DR. STARFIELD: Actually, it doesn't relate too much -- you probably haven't seen the draft letter, have you?

DEBBIE: Just as I walked in.

DR. STARFIELD: We are not really referring to specifics for the most part. Where we do, I will make sure to do that.

DR. IEZZONI: You refer just to specific objectives quite specifically.

DEBBIE: In fact, one of the comments I reviewed yesterday did deal with data systems and, for example, it was suggesting the behavior risk factor surveillance system he added as a potential source for this, that and the other objectives, for example.

DR. STARFIELD: Yes, and I actually was very confused about that particular survey because one chapter indicated that that was the source of data on income and other chapters said nobody is finding data on income.

DEBBIE: That is interesting. We have got -- this is why it is a draft and raise that inconsistency so that we --

DR. IEZZONI: Actually, that is something that we should raise, that the document needs to be gone through for internal consistency, especially around data sources when you are talking about your data source recommendation.

DEBBIE: One of the things -- and I don't know whether Olivia has shared it, but just last week the Healthy People Steering Committee had a conference call to talk about a process for data issue resolution, if you will. And we are approaching the ten largest data system managers to actually convene a meeting so that each of the work group coordinators in this Healthy People 2010 development liaisons with that data systems manager to make sure that, one, this data system can be maintained to collect the data for Healthy People 2010 or for developmental objectives, that we would actually explore the timing, the cost, the operational definition of some indicator to get on a particular data systems collection plan.

We talked in that call about how to coordinate between you all at NCVHS with the Department Data Council, with the Healthy People Steering Committee to make those connections between us all as well because this is a pretty tall data development order that we are putting out to the American people.

DR. IEZZONI: Any other thoughts or comments or questions that you have for us?

DEBBIE: Well, I would encourage your comments and certainly a couple of things, I think, as I said before the full committee back in June and now that the comment site is operational, I mean, you all can view all these comments just like everybody else on the Internet. Certainly, I encourage you to comment individually; certainly to comment on behalf of organizations that you are affiliated with.

We have done a box so that you can say that this comment is on behalf of, for example, NCVHS, and then you can comment anonymously as well. So, there are really three ways that you can put forward your comments on this particular proposal.

DR. IEZZONI: It sounds like you are really getting good input and you are doing a great job.

Barbara and Olivia, what we will try to do then is have a cleaned up copy for presentation on November 13th to the full committee for its approval. Do you think that that timetable is okay?

DR. CARTER-POKRAS: We should be able to do something. Obviously, it will be a draft because Diane Wagner and Mark Selinsky(?) and other folks are going to be available to make a presentation formally to the National Committee to expand upon some of the issues that Debbie has brought up today.

DR. STARFIELD: What will be addressed?

DR. CARTER-POKRAS: The comments, the comments from the National Committee. You may want to revise it based on some of the issues because what we haven't been able to do yet is to capture sort of the gist of the public comments in all the regional meetings because they haven't all occurred. I am going to one Thursday and Friday of next week, as well as the public comments have been submitted both in writing and also posted on the Internet. So, you may want to take a look at those.

DR. STARFIELD: The public comment period isn't over until what, December 15th, something like that?

DR. CARTER-POKRAS: That is right.

DR. STARFIELD: That means we can't do our letter until --

DR. IEZZONI: I think we should move forward with our letter at this point. If major things come up at the presentations on the 12th, we can certainly overnight try to revise it, but let's try to have a draft of a letter in the book, the meeting book, so people can review it. Because I just want to make sure that we get this out there.

The recommendations are compelling already.

DR. CARTER-POKRAS: I was just suggesting that we may want to do our quick revision but there may be some additional revisions that will be needed after the presentation.

DR. IEZZONI: Okay. You just want to make sure that --

DR. CARTER-POKRAS: When do you need it for the book so that we can make sure --

DR. IEZZONI: I don't know. Lynette, when do we need it to go into the briefing book for the meeting on the 12th?

DR. ARAKI: Give it to Jackie Adler by November 3rd.

DR. IEZZONI: That is a Tuesday.

DR. ARAKI: It is listed in the revised agenda as an action item.

DR. STARFIELD: Let's talk about logistics. I certainly can do it but I don't know that I can check with Olivia. We have got a conference on Monday and Tuesday, which is, what, the 2nd and 3rd?

DR. IEZZONI: So, you might get it to her on the 4th or 5th and they will just have to -- I think it doesn't have to be perfect. If you stamp it "Draft" a couple of places -- we just want to get it in there so other committee members can see it and know that it is coming and if we need to revise it after the presentations on the 12th, we will.

DR. CARTER-POKRAS: Barbara, I can certainly take a stab at it and then send it to you.

DR. STARFIELD: Okay.

DR. IEZZONI: Okay. Now, where did Joan Turek go? She was here and then she left. Does she have some materials for us?

Thank you very much.

DEBBIE: Thank you. Look forward to receiving your comments.

DR. IEZZONI: Thank you, Olivia, for all your hard work on this.

Agenda Item: Review of Outline for Report on the Insular Territories

Okay. What is being passed around, I guess, is a draft outline for the insular territories meeting report.

MR. HITCHCOCK: There are actually two parts. There is a very brief outline and then there is some filler.

DR. IEZZONI: Dale was just telling us what we are getting.

MR. HITCHCOCK: Two parts. There is a one page outline and --

DR. STARFIELD: Is it all stapled together, though?

MR. HITCHCOCK: No. There was a stack of 30 one page outlines and a stack of 30 bigger packages.

DR. IEZZONI: Joan, why don't you talk us through what you did and what we are looking at?

MS. TUREK: Dale and I sat down and we came up with a fairly general outline here of what we saw as being a short report that would start off with stating why we had the meeting and what the major findings and recommendations were coming out of it because that is all a person at a senior level is going to look at anyway. And that would give background materials and support of the findings and recommendations, would tell us something about the insular areas and how they relate to the U.S., would talk about what kind of data collection activities are being conducted at the federal level and what the federal perspectives are regarding the adequacy of the data collection systems.

And then we would also have a discussion from the perspective of the insular areas on the adequacy of the data collection systems and what they would see is needed. What we did was we went through all the materials that we had and for each section we kind of put down a summary of the kind of the type of information we would include. So, if you look under the purpose of the meeting, you get an outline of what we would say would -- you know, we would be saying in that section.

I think if you look under the findings and recommendations, we didn't try to come up with findings. What we put in here is two pieces of -- two materials. The first, which is data needs and issues, is basically going through the transcript and trying to identify what people suggested were issues and needs that might go into recommendations and then to get it from a different perspective, we also have Lynette's easel board.

So, that can serve as the basis, I think, for our talking about what kind of recommendations you want to make. I think we need to also look at how we want to deal with some of the diversity. Quite clearly, Puerto Rico is much more like a state and some of the insular areas have very inadequate data systems and some are not even U.S. Territories, so they don't have to follow the kind of standards that we set up for our data systems.

We then in the background materials, Dale put together a description of our relationships to the insular areas and then he -- I guess you talked to the federal agencies, right? You might want to tell them what you have done in the federal activities.

MR. HITCHCOCK: Well, basically, I went back to each of the people who presented here within the Department, at least. I didn't go back to the Department of Energy or to Commerce. I looked at what they said in the transcripts, but I talked to, you know, Denise Coo from CDC and Beatrice Rouse from SAMHSA and Marian Friedman's group at NCHS and Mike Millman and the HRSA piece, but I basically said that we are going to be doing this report. It is going to be a short one. I would like to get from you a list of the activities that you are conducting in each of these islands that you really want us to make sure that we include in the report. So, that is what part of that background material is. The tables are a series of which are the activities in each of the islands that the federal agencies feel are among the most significant that they work on.

DR. IEZZONI: That is very nice, Dale. I like how you have done that. That is really helpful.

MS. TUREK: Then the last two pieces of paper are, again, my going through the transcripts and Lynette's material from the easel board, which talks about the adequacies of the data systems from the perspective of the people from insular areas. I tried to divide it into infrastructure and training, which are issues about the capacity to collect data, data quality, which really, again, are about the capacity to collect data, but they are different kind of questions. They are about missing data on, you know, inability to actually go through and clean up the data and about budget.

I think there was an implication but I didn't hear a lot of people say it, but most of them don't have much money for data collection. Then when I cross compared between what Lynette and I had done and what I had done, it was relatively similar.

I think the other thing -- and I put it in the earlier part -- was Hortensia's idea about having some general principles that we would articulate, such as -- one was inclusion and I am not sure how we want to handle that. It probably ought to come out in findings and recommendations or a statement of principle. But, you know, to some degree, in all honesty, there is not a whole lot there. I mean, we didn't get written materials from anybody but the Marshall Islands. So, there is a lot of kind of inconsistencies across the materials we got from the presentations.

So, I think that is one recommendation I have for keeping it fairly short.

MR. HITCHCOCK: I think, you know, after today we will -- I don't know how much time you would need to react to what we have got here, but at some point, the next step is as I think I see it is for the committee to react to what we have done here, both in terms of content and in terms of this very general brief outline and then to see if the outline makes sense and let us know if it should be modified and also to talk a little bit about the length of this report.

DR. IEZZONI: You had always said that it should be ten pages.

MR. HITCHCOCK: It ain't going to happen, I don't think. I mean, it is just --

DR. IEZZONI: Do you think it is going to be longer?

MR. HITCHCOCK: Yes. I think it is hard to do justice to the unique --

MS. TUREK: I mean, that would be exclusive of the attachments.

MR. HITCHCOCK: Right, right. Yes. I could see, you know, sort of putting in some of the quotes, some of the things that we learned during this meeting, like there were no blood banks on some of these islands, for instance. People donate blood and then HIV testing is done after the fact and things about living conditions in quotes and that sort of thing.

MS. TUREK: It would be wonderful, as we are doing for our other report, to have quotes to make it alive because some of the people were very compelling in what they said.

DR. IEZZONI: Well, you know, we said ten pages to reduce the burden on you guys, quite frankly, because I think even if we had a ten page report, we would need an executive summary. So, if it will be longer, you know, 20, 30 pages, as long as we have the executive summary, I think --

MR. HITCHCOCK: I would like to shoot for somewhere between 15 and 20 probably. It occurs to me, too, that -- I don't know -- did we talk about registries at all at this meeting in July? We have Brenda here today and --

DR. EDWARDS: -- health status, particularly in screening and we did that at one of our community-based organizations that teamed up with the University of California, I think, at Irvine and also a piggyback on the other ideologic studies, looking at nutrition and cancer risk and diverse populations are being conducted in Hawaii and California. So, we actually tried to bring them together in that survey built on NHIS that required a fair amount of cultural focus work because they don't have a word for "cancer."

I can connect you with the grantee and the people that are continuing on. We have extended another year to do some education work and outreach to conduct that study. So, it really is going to be the only data on looking at health status.

We have attempted to look at cancer rates in the American Samoans, but I think a hurricane or something wiped out all their medical records. So, what they were doing, which was incidence case only, but nonetheless there was some work on -- it is not a lot, but --

MR. HITCHCOCK: How about Puerto Rico and the Virgin Islands, are they included in SEER at all or --

DR. EDWARDS: Puerto Rico used to be. They are now are funded by the CDC and PCR and there are still some issues with regard to the commonwealth core support for that. There are some issues with regard to compliance in the reporting.

MS. TUREK: My impression was that Puerto Rico's problems are much more similar to those of some of our poorer states; whereas, the Virgin Islands problems were much more similar to those of the Pacific insular areas. One impression that came across in rereading the materials is that information is not really valued at the higher levels in some of those places. So, you really have a strong education program.

DR. IEZZONI: That came across very clearly at this meeting.

DR. EDWARDS: Also NPCR does get a developmental study to develop a register.

[Multiple discussions.]

Maybe some of the others, Dan Miller or somebody would know that.

MR. HITCHCOCK: Let me e-mail you a bit on this.

DR. IEZZONI: Comments from the subcommittee -- I think you are really off to a good start. I really do. I think that you have really nicely organized things and I think what we need to do is we need to get this material to other members of the subcommittee.

Elizabeth will be at the meeting on Monday and Tuesday. Maybe we could try to have a copy for her there so she can get it because she could look at it on the plane on the way back. Hortensia, obviously, needs a copy and then the other subcommittee members as well.

What we should try to do -- and Carolyn, you should hold us to this, is we should try to get back to you with comments by our November meeting.

MR. HITCHCOCK: Some sort of themes would be particularly useful --

MS. TUREK: Some sort of idea of where you want to go with the recommendations, I think, too.

DR. IEZZONI: I think what we need to do is we need to have Hortensia be -- you know, frankly, we need to talk to her about whether she would be willing to take the lead on this because this meeting was really something that was her brain child and she is very personally committed to and --

MR. HITCHCOCK: Right. And at our meeting on the 15th, she was talking about a set of guiding principles.

MS. TUREK: Which we got on page 4 of these materials.

DR. IEZZONI: Carolyn, would you be willing to call Hortensia and just talk to her about this and feel her out for whether she would be willing to kind of be the lead subcommittee contact on this? If she doesn't have time, she needs to be honest with us and tell us that and we will need to figure out some other way to formulate this. But I think all the subcommittee people should get comments back to you by November 12th. So, that way, if you have questions for us, you can ask us.

It would be good to get something set up formally so you would have a subcommittee person like Hortensia to be working with more directly.

MR. HITCHCOCK: Does that sound good to you, Joan?

MS. TUREK: It sounds good to me, yes.

DR. IEZZONI: I think -- what is your time frame for getting this written? You know, I actually think that you should start writing the background stuff because I think there is only so many ways that you can do that. I suspect that the subcommittee won't have that much of a comment on --

MR. HITCHCOCK: It is the who, what, where, why, when aspect of it.

DR. IEZZONI: Right. And, in fact, some of the findings, you know, what the people said, like the blood bank and some of the texture of the comments on -- you know, the recommendations piece you, obviously, need us for, but you can certainly describe what the people are saying in their verbal presentations, even though you might not have written materials from many, except one of the sites.

MS. TUREK: In doing this, I had focused on data. I had not picked up a lot of the anecdotal evidence about the delivery systems because I thought our major interest was on issues related to data.

DR. IEZZONI: It is, but I think that that is the background piece that Dale is going to kind of give a sense of on, you know, what is -- what things look like on the ground, very briefly.

MR. HITCHCOCK: All right.

DR. IEZZONI: So, I would really encourage you all to be writing right now because, I mean -- do any subcommittee members disagree with me that they should start writing right now, based on what you have here?

MS. COLTIN: I don't disagree with you, but as someone who didn't participate in the meeting, looking at it -- and I am assuming you are writing this not for just the participants but for others to become aware of the issues that were raised here, the first Roman numeral on purpose of the meeting, it gives a lot of background about how the meeting was organized and where it falls, but I really don't know. Why did you have this meeting? Was there a problem that was perceived in advance? What was the meeting intended to address?

DR. IEZZONI: I agree completely. I think that Hortensia articulated that in various memos that went back and forth and you can actually go back to the transcripts of the meeting, I think, in July of 1997, where we talked about doing this.

DR. TAKEUCHI: I was just wondering, maybe if it is possible to maybe not as a narrative, as a table to provide some textural materials on the areas themselves; for example, square miles --

MR. HITCHCOCK: That is in there, I think. Square miles and the populations is in there and the nature of the relationship --

DR. IEZZONI: That looks nice. I like how you have done this by tables because I think it really focuses.

MR. HITCHCOCK: Okay. Well, good.

DR. STARFIELD: This may be in there, too -- I haven't looked for it -- the IOM report on the territories came out sometime during while this was going on. I mean, is there any reference to that?

MS. TUREK: They were one -- they only had literally in their report one paragraph on data and that was a recommendation for development of a regional data system that was administered and I really have a question how you actually get something functioning when you have three countries that are not -- we had three of the territories are part of the United States and three are independent islands are nations. How do you ever --

DR. STARFIELD: I think it is important to make that point, that that really didn't address data.

DR. ARAKI: I know that there was a section --

MS. TUREK: They had one paragraph.

DR. ARAKI: Right, but throughout the report there were discussions about data and I think you can glean -- I mean, I was able to glean different issues related to data in there, but also I just sent the e-mail out to -- there are some activities that are going on now. Some of those things need to be incorporated, I think, in here. These are activities that are occurring with the South Pacific Commission, which is now called something -- it has got the same acronym but it is called something else now.

DR. IEZZONI: Lynette, I would suggest that you and maybe Laurie Lynn(?) could think on -- the woman from --

DR. ARAKI: Laurie Lynn, right.

DR. IEZZONI: I think that you also should comment on this because -- and see whether Laurie Lynn would be willing to do that as well because I think that you are going to be aware of things that none of us are aware of that might be pertinent. Because we do want to be as up to date as we can be so we are not writing a report that --

MR. HITCHCOCK: Yes, because we just -- over the last week or so, we got notified by Denise Coo that there is a group in -- Lynette just was talking about it briefly -- that is based in Australia or New Caldonia or someplace --

DR. ARAKI: Well, it is part of the SPC commission that -- I think he was a fellow in Australia, writing actually really a Pacific nations-based program, public health surveillance program and also training, but it would be region wide for the whole Pacific area. And some of it are not necessarily American -- or, by the way, one thing you have to remember is they are no longer freely associated states. They are freely associated nations. That is what the State Department --

DR. IEZZONI: Well, if you can just make editorial comments like that --

DR. ARAKI: But those are the nations that are part of this new --

MR. HITCHCOCK: This group was -- it was sort of like it only overlapped a couple of the islands that we had here that are U.S. associated islands. But it was -- the group was trying to put in place a system for public health surveillance.

DR. IEZZONI: Well, so, I think, Kathy's point, though, is really well-taken, that you should write this for people who know nothing about this whole area --

MR. HITCHCOCK: Absolutely.

DR. IEZZONI: -- just like those of us were able to come and knew nothing about it beforehand. And go back to some of the original transcripts when we were talking about the meeting as to why it was important. You have got a really great start and I would just encourage you to be writing and, Carolyn, contacting Hortensia, making sure all the rest of the subcommittee has the materials.

Let's try to see if we can wrap up a report for presentation to the full committee for the February meeting, which means that I think, unfortunately, we are going to have to do the old conference call routine again, Carolyn, on that -- either one or two conference calls. We can cancel the second one, specifically to talk about recommendations from this report because it would be a shame if we couldn't talk about the recommendations until our February breakout, so it would take it over into June.

I would like to get this out as soon as we could. So, let's aim for having a good draft of the report by early December or mid-December and then talk about the recommendations. Maybe book a conference call for mid- December, Carolyn, about recommendations and then maybe another one for mid-January in case we need it on recommendations, revising the report by mid-January, so we can get it to the full committee for February, which is the first week in February at the meeting.

Is that okay?

MS. TUREK: It sounds fine to me.

Is that all right with you, Dale?

DR. ARAKI: Sorry. We were just kind of --

MR. HITCHCOCK: I was distracted, but I will go along with --

DR. ARAKI: I was trying to find out if they had some resource materials. Sorry.

MS. TUREK: That we have a draft of the report done by early December and that we then work through two conference calls on the recommendations and then have a report to go to the full committee at the end of February. I think that -- early February, excuse me. I think that will be fine.

MR. HITCHCOCK: It would be helpful if we could have some e-mail follow-up to the conference calls so that we don't have to --

DR. IEZZONI: That is fine. I think we need to see if we can get Hortensia to be the lead --

MS. RIMES: Let me do that first and then we --

DR. IEZZONI: But I think all of us -- I know that Elizabeth Ward will be very interested in this. She was very -- she had had some work in the Pacific Islands over the past. So, she is very vested in this. So, she is another person that you could actually have.

[Multiple discussions.]

MR. SUMME: Lisa, do the DOD activities have any impact -- I presume it certainly should have some impact on Guam and I was wondering if these activities might affect other areas as well or does it have some impact on health needs and data and so forth?

DR. ARAKI: They do. In fact, actually part of it is -- some of the DOD facilities are used as medical -- tertiary medical referral facilities and there is a significant impact on there. Then there is also an effort now, an initiative that Tripler is working with some of the freely-associated nations, along with HRSA, I believe, in having a telemedicine kind of medical consultancy, as well as continuing education effort. I mean, there is a fledgling plan going on. So, there are things that are happening and I think we need to reflect that.

DR. IEZZONI: Okay. So, we just need to have people like Lynette and Dale going out and Joan. You have done a great job. It looks nice. This is a really good start.

MS. TUREK: Thank you. Well, thanks for Dale because he did a lot.

DR. IEZZONI: Dale, thank you. It looks really -- I am pleased with it. And Olivia, we need your comments on this, too.

MS. TUREK: I have Olivia's, too, to fold in.

DR. IEZZONI: Oh, okay.

MS. TUREK: I have got their notes, too, and actually the themes are the same, I think, in all three sets, but they are all useful.

DR. IEZZONI: Okay. Great.

Are there any other remaining -- we have actually done quite a bit today. Thanks to Paul, who flew in for a second time from the West Coast this week.

Are there any other remaining issues that people feel we need to discuss or shall we adjourn the meeting.

DR. STARFIELD: I will move to adjourn.

DR. IEZZONI: Move to adjourn. Second.

Let's adjourn. Thank you very much.

[Whereupon, at 2:00 p.m., the meeting was concluded.]

[THIS TRANSCRIPT IS UNEDITED]

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

SUBCOMMITTEE ON POPULATIONS

October 30, 1998

Proceedings By: CASET Associates, Ltd. 10201 Lee Highway #160 Fairfax, Virginia 22030 (703) 352-0091

TABLE OF CONTENTS

PARTICIPANTS:

Subcommittee on Populations Members:

Staff:

P R O C E E D I N G S [9:40 a.m.]

Agenda Item: Introductions and Overview for the Working Session

Agenda Item: Discussion of Health Care Financing Administration

Agenda Item: Discussion of Work Plan, Staffing and Time Frame for Completing Subcommittee's Medicaid Managed Care Report

Agenda Item: Review Subcommittee Charge

Agenda Item: Leading Health Indicators

AFTERNOON SESSION [1:05 p.m.]

Agenda Item: Healthy People 2010

Agenda Item: Review of Outline for Report on the Insular Territories

Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway #160
Fairfax, Virginia 22030
(703) 352-0091