Hubert H. Humphrey Building
Room 337A
200
Independence Avenue, S.W.
Washington, D.C.
PARTICIPANTS:
Committee Members:
Lisa I. Iezzoni, M.D., M.S., Chair
Hortensia Amaro, Ph.D.
Richard K. Harding, M.D.
Vincent Mor, Ph.D.
M. Elizabeth Ward
George H. Van Amburg
Staff:
Carolyn Rimes
Olivia Carter-Pokras, Ph.D.
Patricia Golden
Ronald W. Manderscheid, Ph.D.
Page
Lisa I. Iezzoni, M.D., Chair
Rachel Block, HCFA 3
Stanley Nachimson, HCFA 12
Lisa Herz, Medstat 42
James Hadley, HCFA 65
William Clark, HCFA 85
Shruiti Rajan, Urban Institute 98
Committee Members
Review and Comment on OMB Directive on Race and Ethnicity 199
Hortensia Amaro, Ph.D.
Olivia Carter-Pokras, Ph.D
Improving Data on Health Status of Racial/Ethnic Groups 214
Edward Sondik, Ph.D., NCHS
Jennifer Madans
DR. IEZZONI: I think what I would like to do is to get started because we are going to have a really busy day today.
I would like to maybe start by each of us in the room introducing ourselves and so we get a sense of who is here and then we will get started with our morning presentations.
I am Lisa Iezzoni. I am from the Beth Israel Deaconist Medical Center in Boston.
DR. AMARO: I am Hortensia Amaro and I am a professor at Boston University School of Public Health.
MR. VAN AMBURG: I am George Van Amburg from the School of Public Health Institute.
DR. MOR: I am Vince Mor from Brown University.
DR. NACHIMSON: I am Stanley Nachimson from the new Center for Medicaid and State Operations in the Health Care Financing --
DR. IEZZONI: The new center.
DR. NACHIMSON: Yes, from the Health Care Financing Administration. We are about a week old.
DR. BLOCK: Rachel Block. I am now the director of the Data and Systems Group in the Center for Medicaid and State Operations and immediately previous to that, I was the director of the Medicaid Managed Care Team at HCFA.
DR. HERZ: I am Lisa Herz with the Medstat Group.
MS. GREENBERG: I am Marjorie Greenberg. I am the executive secretary of the committee.
MS. RIMES: I am Carolyn Rimes, HCFA.
MS. WARD: Elizabeth Ward from the Washington State Department of Health.
[Further introductions off microphone.]
DR. IEZZONI: Good. Thank you.
I would like to first start out by thanking Carolyn Rimes for putting together this program on a very quick turnaround and to those of you who will be presenting to us this morning also for responding in a like and timely fashion.
Basically, the context is that over the next year, hopefully, the Subcommittee on Population-Specific Issues of the National Committee on Vital and Health Statistics will be looking at how the nation is going to monitor the impact of Medicaid managed care.
Today is our kind of kick-off, where we are just trying to learn a little bit about what the issues are, what the data systems are, for example, that can support that kind of evaluation. So, we are very grateful to have you all here and we would like to get started then.
Stanley, you and Rachel are -- I guess, Rachel, you are first off. Is that how you would like to organize this? Okay.
DR. BLOCK: And I am going to be pretty brief because I think that Stanley, some of my other colleagues, Lisa and others, are going to go into more depth. I just wanted to paint a very quick, broad picture of what is going on out there since it seems as though our ability to stay up-to-date on developments in this area at a very basic level are as challenging as some of the more sophisticated and complicated issues that you are interested in.
The handout that I have brought, Medicaid Managed Care Overview Trends, I am not going to go through this. This is sort of a standard presentation that I often do for groups, but let me just quickly run through some of the numbers and trends that we have seen recently. Then I am going to just make a few observations that I think are broader and will help to focus some of your deliberations over the course of that process that you just described.
The first thing is I think it is fairly obvious to everyone that there has been a very significant increase in the number of Medicaid beneficiaries, who are enrolled in Medicaid managed care and that, at least, from a HCFA perspective is directly correlated to the fact that we have a tremendous increase in the number of waivers that we have been asked to review and approve.
If you flip past the first few pages, which provide some definitions that you can go back and look at later, what you will see with the first bar chart that looks like this is in 1996, this is a point in time annual enrollment figure that we gather every year. We estimated that there were 13.3 million Medicaid beneficiaries enrolled in one of the wide variety of the forms of managed care that HCFA recognizes.
And you will see, in particular, that that represents a very significant increase even just from the one year before that. From 1995, we saw a very significant increase and that this increase has occurred in a very short period of time overall. If you go back to before 1992, you would notice that the numbers were hovering around that 1 million, 2 million mark for a good decade, right up until the early nineties.
So, not only has there been significant growth, but it has really occurred in a very recent time frame. The next one just shows you the same figures in terms of percentages. The next one is a new table that I decided to include this year, since we try to adapt our reports to the number of different questions that we get, particularly from the public, and this is now what I hope to become the famous top ten list.
What you will see are a couple of things that I think are interesting. One is that there is certainly a wide variety of the types of states that are represented here. The middle column indicates the authority under which they are implementing their programs and, here again, there are a wide variety of authorities that states have used and often these authorities are in place at different parts of the state because of the unique geographic characteristics that have driven how states have implemented these programs.
You see that the No. 1 state and the No. 10 state, there is a pretty significant difference in terms of the enrollment between those two states and also that these ten states represent slightly more than 60 percent of the total. So, what that would signify to me is that while there has been this enormous increase and it clearly is a significant trend that we anticipate continuing, we still see that the bulk of the activity, both in terms of populations and the extent of the managed care implementation, varies widely and there are a few states that really still represent a very significant portion of the population now enrolled.
The final chart that I would quickly describe here is -- and here is where those earlier definitions come in. I will try to briefly characterize this. Basically from the largest bar on down, these are HMO programs, either state plan defined or federally qualified and the HIOs represent a unique managed care feature that exists only in the State of California. There are several counties, which by law are allowed to take on risk directly and organize and finance the delivery system.
What you will see here is that now significantly better than half of Medicaid beneficiaries in 1996 were enrolled in some form of HMO or reasonably comprehensive risk kind of arrangement. The bar immediately above that, PCCM, primary care case management, had been the predominant form of Medicaid managed care up until, again, quite recently.
So, here again, we see a pretty significant shift in terms of not only the amounts of enrollment, but also in the characteristics of the programs that beneficiaries are enrolled in.
So, that is my really quick update on the statistics. The reports and the specifics for each state and the plan level enrollment for each state are part of our annual enrollment report. It is available on our Web site. Of course, I didn't bring the Web address with me, but I am sure that we could provide that if people were interested.
I think that there are three issues that I would like to highlight that I think will complicate your deliberations, but I think also have to be part of them and some may be obvious than others.
The first is that, clearly, as you look at these very general characterizations, the first thing that you notice is that there really isn't only one type of managed care arrangement that Medicaid beneficiaries are involved in. This is somewhat distinct from, I think, the commercial population and I think it is particularly distinct from the Medicare population, where now, in effect, we really only have one type of a thing that we call managed care and there are fairly specific limitations in terms of the types of entities that can qualify to get contracts.
Now, obviously, that might change with some of the new legislation and we have a few demos here and there that push those boundaries out, but the fact is that I think that Medicaid represents a far more complex and varied number and range of types of managed care arrangements. That is something that I think needs to be considered as we look at the underlying needs and capabilities of developing and collecting reasonably useful data and information about these programs and their impact on the population.
Also, a corollary to that, which I think probably is obvious but I want to restate, if you have seen one state's Medicaid managed care program, you have seen one state's Medicaid managed care program. There may be some very basic ways in which these programs on paper look alike, but each state's experience with them is really quite different.
I think maybe some of you have seen some of the recent reports that have been produced by Mathematica with funding from, I think, the Kaiser Family Foundation and it describes some of the political history associated with these programs that, again, is just one additional dimension that makes Medicaid unique.
Another issue that I think is critically important in terms of evaluating the impact of managed care -- and I think this would be true even if we weren't talking about managed care, but just focusing on the population -- and that is, by definition, we are talking about populations that have certain kinds of characteristics that make them eligible for these programs. Income, obviously, is one. Family characteristics may be another, disability status and so forth.
As you look at the whole complex web of eligibility requirements and ways in which people can become eligible, including through the 1115 eligibility expansions, which the formerly ORD folks will be addressing, you get the general picture that Medicaid eligibility is quite complicated and an understanding of the importance or the role that medical care might play to these populations needs to consider a much broader web of social and other kinds of programs that probably have at least as much to do if not more to do with health status and health status improvement as anything that the medical care system or the managed care system may be able to directly intervene with, unless there are more explicit connections with some of those different kinds of social and support services in the community, many of which represent other streams of funding from both the federal and state governments.
And it seems to me that because most of those dollars, certainly not all, but many either go directly through states or at least have some connection to some state management or oversight responsibility that states are in a unique position to organize their data in a way that would give you a much fuller picture of not only the impact, which, again, is a pretty sophisticated analysis, but even just broad characteristics of expenditure patterns, population characteristics and so forth.
An example of this, just so you get a better sense of what I am talking about, I think, is the HIV Information System that Maryland developed. They are not the only ones who have done this, but it is a particularly model example of the type of thing I am talking about, where they have a database that integrates basic vital and health statistics information, including their public health HIV surveillance data, along with their Medicaid expenditure data, along with the data that comes from a variety of different programs that the state either administers or puts its own money into.
As you look at that much richer array of information, I think it tells you a lot more about the characteristics and, hopefully, about the outcomes for the HIV infected population than if you were just looking at the Medicaid data alone.
A related but I think separate issue is we are starting to see states now really interested in how to bring managed care models to their long term care systems, either as a separate and distinct managed care financing approach or more likely in some way integrated with the acute care system. That brings up, I think, two important issues that I don't think anyone has really invented the wheel on yet. So, you will be there as the cutting edge is just starting to take shape.
The first is it, obviously, brings up issues about Medicare and Medicaid dual eligibles and the degree to which the different rules of those programs and the limitations that that places on some of the types of models and the state's ability to implement new and innovative programs in that area. While there are barriers, I think we will start to see some very interesting and different models emerging, many of which will be at the state's initiative, some of which will continue to be driven by HCFA's either demonstration interests or, again, possibly other means that Congress might deem worthy of considering.
The second is that, again, obviously, when you are looking at long term care, you are looking at a different set of services, different types of providers, different kinds of information and the way in which you might want to evaluate the impact of managed care for that population may, in fact, be qualitatively different in terms of the types of measures that you would want to consider from those programs that are serving the low income women and children, who still to this day represent the vast majority of beneficiaries enrolled.
Having said that, I don't think we can afford to lose sight of the women and children who are enrolled in Medicaid managed care. One of my big concerns is that everyone has just sort of assumed that we have figured out how to do managed care for those populations. And I don't accept that assumption.
I think that there continues to be evolution and we have seen some indications where in certain states you can see some kinds of things that we assumed were being done well, if they aren't subject to rigorous monitoring, may well not be done as well in the future, specifically they have both prenatal care and so forth, that we just assume are or should be the bread and butter of managed care plans at this point.
There are so many dynamics and so many other factors driving how plans serve these populations that I don't think we can afford to lose sight of those basic issues of evaluation at the same time that our interest is obviously drawn to special populations, long term care, the disabled and some of the other things that I know are more explicitly on your agenda.
So, that is my really quick version of the broad landscape and hopefully a few things for you to consider.
DR. IEZZONI: Rachel, that was a really wonderful introduction for us.
What I would like to do is maybe ask Stanley to do his presentation and then we have the committee begin to talk with you more directly. But let me pause. Are there any clarifying questions for Rachel before we ask Stanley?
No. Okay.
DR. NACHIMSON: Thank you. Good morning.
I wanted to talk a little bit about the basic Medicaid data and the basic Medicaid systems that are now existing in the states. I think it is important to remember that most of our Medicaid data is produced from claim records and eligibility records, which are primarily administrative records, not designed for research purposes.
For example, when someone is enrolled in Medicaid, there is not a health status taken. There is no history taken. If a pregnant woman comes in and enrolls, there is not necessarily a record of the number of prenatal visits that she had before she came on to the system. So, she just enters Medicaid basically as an unknown.
Encounter data in the Medicaid world is usually collected through the use of what we call dummy or shadow claims. It generally contains the same information that is contained on a fee-for-service claim, most of the time without a dollar charge. Some states have instituted sort of a proxy charge that a provider would put on this encounter claim that guesses what they would have been reimbursed under Medicaid had this been a fee for service claim.
And most importantly, HCFA has not yet mandated the collection of encounter data in every state Medicaid program, although there is data for the 1115 waiver programs that is supposed to be collected by the states that have those waivers.
That is sort of the broad outline of Medicaid data, what we kind of don't have. What we do require for every state Medicaid program is an annual summary data report for each state. We call it our 2082 report. Just as an aside, people have asked where does the number 2082 come from. It actually came from the room number in the HHS South Building of the person that put together the report. There is a room 2082 over there. That is why we have the 2082 report.
DR. IEZZONI: Could you tell us more about this report?
DR. NACHIMSON: Yes. We actually have an alternative to the 2082 report, which I will also get into in a little bit more detail, which we call the Medicaid Statistical Information System. It is more detailed data. I will talk about that in a few minutes.
As Rachel mentioned, there is an annual managed care enrollment report that we get from every state. That is a point in time estimate or count of the number of folks that are enrolled in managed care programs in the state.
The 2082 report is, unfortunately, an annual hard copy summary report at this time. It is, oh, about 44 or 45 pages, about 4,000 or so cells of information that comes in or is required to come in from every state. It has summary data on eligibles, number of eligibles, number of recipients, the types of services that are provided, the expenditures broken down by some of the demographic characteristics, like age, race, sex, the program affiliation, whether you are a pregnant woman, child, disabled, SSI recipient, CAPS(?) recipient and those types of things and the type of service.
This data is summarized and we publish it every year. It is also available at the HCFA Web site. That is WWW.HCFA.GOV. And you can sort of wind your way through that Web site to get to the exact piece of information, whether it is managed care enrollment or HCFA 2082. There are some various other things that are on there.
But this is what was started out with. Obviously, it is kind of old technology. We still require it, but we have moved a little bit into the future and you have an alternative for states that don't want to produce a hard copy summary report and that is the Medicaid Statistical Information System. And it does collect detailed person level data on eligibility utilization and payments.
We have 30 states now participating with more on the horizon. On the good side, we have large states, like California and New Jersey and Michigan. On the negative side, we don't have some of the big states yet, like New York and Texas. Again, it is optional. At this point it is not required.
What happens in this system is basically every quarter we get a carbon copy on tape of a state's eligibility file and their service records or their claims records for those previous three months. MSIS also receives the record of a managed care premium payment. So, that comes in. We know for most states the individual premium payments that are made by person and to the particular plans.
The MSIS system also does have the capability of receiving encounter data, these dummy or shadow claims. There are three files that we generate from these tapes that come in every quarter from the states. It is called the valid tape file. Basically, after the tapes have gone through some set of editing, we put them on a database and we have the detailed records, detailed claims and eligibility information for each Medicaid beneficiary in the state.
There is what we call a personal summary file, which for each person is an annual summary of their eligibility records and the payments by broad service types, so we know during the course of a year a state paid x dollars for long term care, x dollars for physician services, x dollars for hospital payments for an individual person.
There is also the 2082 file. One of the advantages for states to join the MSIS is that all they have to do is send us these tapes every quarter and we will produce actually on a quarterly basis this summary report for them. So, that requirement is waived for those states and they like that.
There is also a spinoff of the MSIS system that is called the SMRF or the state Medicaid research files and this was an attempt by the agency to make the MSIS files much more useful for researchers. There has been a little bit more quality assurance done on the data and it has sort of been transformed and structured by calendar year date of service as opposed to the date of payment records MSIS is really set by.
So, the SMRF files will allow researchers to track an episode of care. You can go to the SMRF file for 1994 and look at all the services that a person has received that were paid for by Medicaid and received in 1994, as opposed to the MSIS files, if you looked at them for 1994, you would see all of the services that Medicaid paid for a person in 1994. Those may have been received in 1994 or 1993 and, interestingly enough, sometimes the claims come in two, three or even four years later.
The SMRF files also have some indicators for delivery, ESRD, tuberculosis, so you can identify some populations fairly easily.
One of the weaknesses of the 2082 is that it really has not been changed to accommodate the shift to managed care for Medicaid programs. It was fee-for-service based and tried to measure services that were actually paid for. So, it has not really collected information on managed care premiums or encounters. Since a managed care premium is sort of a prepayment and does not really represent any services received, those services were not included in the service of the payment side of the 2082, although the eligibles were still there, there was no record on the 2082 of the fact that there was a managed care premium or any encounter services received.
We are making some shifts in accommodations. For fiscal year 1998, on the 2082, there will be data on premium payments and PCCM payments with service categories. So, we will -- this will allow folks using the 2082 to do some demographic analysis of these payments. We will have an age distribution of recipients who had premium payments, program distributions, raise distributions, those things.
But, unfortunately, there still will not be any service information, no encounter service information on the 2082 for folks in prepaid managed care.
Fortunately, the MSIS system does allow us to collect some of that encounter information. It already collects premium payments and collects the PCCM or the primary care case management payments as a service type and it does collect encounter data information from those states that have been willing to give us those encounter records.
We can summarize encounter data separately from fee-for-service data. So, if you identify a population in managed care and identify a population in fee-for-service in the state, we can do some comparisons, either over time or at a point of time to see if those populations are being treated any differently.
The MSIS system right now has the capability of analyzing premium information and plan membership. So, we can do things like graphs of managed care premium payments versus total Medicaid expenditures. We have done things like managed care enrollment by county, by gender and by race. So, some of those numbers are available.
We are getting encounter data only from a few states right now. For some reason, Iowa has been the leading state in providing encounter data to us. We have got a number of years worth of Iowa encounter data that we have looked at and actually looks pretty good. New Jersey has been sending us encounter data in California, especially for their dental plan has been sending us some encounter data.
We haven't spent a lot of time to date looking at all of this data for the accuracy and completeness and the validity. We are sort of moving into and trying to figure out how best to make sure that we are getting all of the data, that the data looks decent and is really worthwhile looking at for research purposes.
And, again, with encounter data, we should be able to make plan comparisons with the MSIS system. If you have got a state with three or four different HMOs, we should be able to identify the members of each of the HMOs or each of the managed care plans and make service and utilization comparisons among those plans.
Now, on the MMIS or the systems side of the house, it is the Medicaid Management Information System that really is producing all this data in every state. That is the basic set of requirements the states are supposed to have to process Medicaid claims.
We are working on revising the requirements for managed care. To date, the instructions to the states and the requirements of the states have not really addressed what they are supposed to have in their system to really oversee managed care plans. We are looking at both the data that they should collect and how they should manage that data and what they should be doing with encounter data as a requirement to managing their HMOs
DR. IEZZONI: Okay. Good. Thanks, Stan.
Members of the committee, any comments, questions for Rachel and Stan at this point?
MS. WARD: I guess, Rachel, maybe the question is directed to you. You made a point that each state is very different. From that perspective, do you feel there is an evaluation capability across the country or, in fact, is your recommendation that state by state should decide whether it is working in that state?
DR. BLOCK: My ideal view of the world is that it would be a combination of both. I think that there are some widely accepted national health status kinds of goals, whether we are looking at Healthy People 2000 or some areas that may be represented by widely accepted clinical practice guidelines and so forth, that, at least stated as goals, should be reasonable ways to look at where is a state relative to that goal.
I am not sure that I have a lot of examples beyond those -- you know, from those two areas, but I think that that is a pretty healthy starting point. I also think that as we get more information from standardized instruments, like HEATUS(?), like the CAP surveys, like particularly the functional status survey, which Medicare is going to do for all of its managed care members, as states start to pick up on some of that kind of methodology, what you would get there, I think, is at least the beginning of establishing some baselines and then you could see, in fact, how different are states in terms of their characteristics from an outcomes perspective.
So, my observation was more that the design characteristics and the environment of each state's program is highly varied, but that probably isn't all that different from what we know are the underlying variations in medical practice patterns and stuff like that.
So, I think it is a matter of acknowledging that, saying what do we think, generally speaking, are reasonable in terms of broad national goals. One of my hopes is that HCFA will continue to improve its capability to work with states to set their own goals, which might be specific or relevant to some unique population issues that they have, which may not be in common with others and then have sort of simultaneously some basic measures that we would be conducting at a national level or at least where we have information that could be out there for a discussion and dialogue at a national level at the same time that we encourage states to work on their state specific and population specific goals.
So, I would like to visualize those as not mutually exclusive and, hopefully, supportive of each other, particularly since in addition to just having the actual measures and outcomes out there, clearly, what we are talking about are not only being able to measure these things, but being able to influence either characteristics of the delivery system or provider behavior that -- and consumer behavior -- that are likely to contribute to some of the variation in those things. And that is a pretty complex technology and I am not sure how you envision intervening, except at a pretty local level to really influence some of those things.
So, I think there is a lot of different levels to the system but I think it is very reasonable to have national goals. The only other thing I would mention is at least under current requirements for Medicaid, and I don't think there is anything that Congress is considering that would waive this, we do have some other areas in which there already are some national standards.
EPSDT is probably the best example. It may not be the best example of an outcome measure, but at least it is a national standard that has been out there for awhile that has served, I think, a very useful purpose from the states' point of view in terms of shooting towards a goal of how to improve their performance in that area.
DR. IEZZONI: Can I just follow up on this from taking our very parochial perspective?
Rachel, this afternoon, we are going to try to come up with a work plan for how we are going to figure out what our role will be in looking at this and one of the options that we are thinking about is using case studies of maybe two states, possibly three, but probably more likely two, to kind of give us examples of various states are doing.
Would your advice to us be to try to find states that are at the cutting edge of information systems or are there any general things that you might be able to say to us about how these states are functioning that could help us think about how we might choose states for case studies?
DR. BLOCK: I think that there are a couple of ways to slice it. One would be that you probably could come up if you looked at very basic population-based or demographically-based characteristics of states, you might want to come up with some sort of a model to support your selection of those states that include at least a representative range of states in terms of the types of populations or some of the socioeconomic variables in those states since the socioeconomic environment is a very important determinant of who is in their Medicaid program.
So, I would advocate that you look for a broad selection based on some basic socioeconomic kinds of characteristics that you could select. I also think that it probably would be important to at least consider the difference in their progress towards managed care. I am not sure if there is a real scientific method to do that at this point, but, again, if you review some of those mathematic reports, you can start to see how the characteristics of those programs really have evolved very differently over time.
The one other thing I guess I would suggest is that to the extent that you can utilize some of these or at least a selected number of what are now increasingly becoming standardized measurements, whether they are from HEATUS or from some other source, I think that that would be particularly valuable because among other things we would have a better basis of comparison in terms of the underlying characteristics of how the data were actually collected and reported.
DR. IEZZONI: I think I should just clarify kind of what we will be focusing on. We are not actually going to be evaluating the performance of Medicaid managed care. We are going to be evaluating data systems that will assist people in doing that kind of evaluation. So, we are very interested in different models for kind of data gathering.
One of the comments that you made that resonated especially on this was your plea that we consider other social support programs that might be funded, not only by the Federal Government but also by state and local governments and the information systems that they might have to also bring to the table to be able to perform a complete evaluation of Medicaid managed care will be important, too.
DR. BLOCK: And also if you can get out of that some basic ideas or recommendations for future directions in terms of where in that system is the best place to try to bring about that kind of link or common set of standards or specifications around those systems.
I haven't seen -- my bias is that I think that you have to get down to a pretty local level to really make that kind of sharing of information really work, but, again, so much depends on sort of the characteristics of each state system that it may be hard to generalize. But I guess I would say at this point if you even had out of your case study approach or some of your other work, the ability to identify some basic characteristics or issues and perhaps a continuum of different kinds of models that are currently out there, that even just documenting that in a sort of concise and systematic way, I think, would be very valuable.
One of the reasons I say that is because in my new capacity, one of the areas I am now going to be involved in more is states MMIS systems and also many states are implementing these integrated eligibility systems that link up their eligibility and Medicaid data. I think it is fair to say that states aren't real satisfied with the value that they are getting for their expenditures in that area and I am not going to comment on how satisfied HCFA is with the outcomes either, but just suffice it to say that we have heard enough from states, I think, to say that they are not real happy either with what they are getting out of those systems or maybe even what their available choices are.
So, I think that any suggestions you could come up with, even if they are very basic ones that would help facilitate the states' design decisions in purchasing or managing your information systems would be incredibly valuable at this particular time. Then also, obviously, anything that you could do to help us better sort through the issues associated with encounter data, again, would be very helpful just because I think that in the next year or two, we are going to be getting around to zeroing in on some standards in that area, whether they are mandates and requirements or some other form, but I think that that is inevitable at this point.
Obviously, there are lots of considerations and concerns there. So, I think if there were a way for your case studies, given this particular focus that you have described, could help states understand their information system needs and capabilities better and also deal with some of the issues that we and others might want to consider about encounter data.
Those would be two things I think would be particularly valuable at this point.
DR. IEZZONI: Good. Thank you. That is very helpful.
George.
MR. VAN AMBURG: In developing the encounter data systems and the advice to the states, how are you taking into consideration what some states are carving out now in special services, like children with special health care needs?
DR. NACHIMSON: I am not sure I quite understand the question.
MR. VAN AMBURG: Well, some states are going to have a separate contractual arrangement for those services. DR. NACHIMSON: Right.
MR. VAN AMBURG: How are you going to integrate those?
DR. NACHIMSON: I am not even sure we have gotten that far to even think about that.
DR. BLOCK: Although if you have got Iowa, then you should have that -- or there should be data in the system addressing that, since they have had basically three programs now; their main program, if you will, their mental health carve out and their substance abuse carve out under a managed care arrangement. So, if you have any recent data from Iowa -- the two carve outs have only been up for two years, but if you have got any recent data from them, you should be able to -- we could look at the Iowa data.
That is actually another issue I would have brought up in my broad characterization thing, whether those carve outs are done through additional capitated kinds of arrangements or remain in a fee-for-service environment and then how do you deal with not so much carve outs but what are some specific areas in which out-of-network use is allowed or encouraged or required. And different states are going to come up with different -- and I think you would want to look at that issue. As you just describe your case study, be very careful to look at those issues because, again, each state has very different kinds of requirements in terms of how tight or loose they try to make that contractual arrangement with the MCO.
And also, they may have very different degrees of how specific or explicit they are with the MCOs in terms of their tracking of out-of-network use, either that which is required, such as for family planning. Again, if I were going to make a pitch for a special area that I think is of critical public health importance, and we really have no idea what is going on out there, it is in that area.
DR. IEZZONI: Family planning.
DR. BLOCK: Yes. It is, in part, I think, because of the federal requirement to carve out which applies in all except for a couple of the 1115s, where that requirement has been waived. So, the multiplicity of different out-of-network uses and then as well as those which are formalized as carve out programs, I think, are important to look at.
DR. MOR: The structure of the system that you have described, the non-systems from state to state suggests, however, that it might be possible to come up with some way of coding up the characterizations of the different state approaches. I know that in the private sector people have come up with all these different paradigms for classifying managed care contracts and arrangements and so on and so forth in the Medicaid -- your description of it in the Medicaid world at the state level.
It is a little more complicated, but are there data that HCFA has now characterizing the current state contracts and structures and are they in a codified form as opposed to just applications?
DR. BLOCK: I am not sure -- I flinched at that last point.
DR. MOR: Data.
DR. BLOCK: Yes. Very limited aggregate. It is more program information at this point than actual data.
DR. MOR: Where program information is basically narrative text.
DR. BLOCK: Yes, or, at least, we do have in a somewhat more automated or systematic form some basic characteristics of the programs. For example, I could run a report for you today that said how many of the state programs were fully capitated versus partially capitated versus some other arrangement. So, they are descriptive in that sense but they are not limited to narrative and we can actually manipulate that information reasonably easily today.
Also, one of the areas that is weakest in our current system that we hope to improve next year is being able to break out those broad eligibility characteristics, but, again, if you have got a managed care state that is in MSIS, where we have some confidence that that basic data would be reasonably clean for you to look at, possibly from some other SMRF experience as well, then I think you could start to patch together some of the different data that HCFA has that could start to come together in a little more systematic form.
I think, though, I would also mention that there is probably very useful information to be had from some other sources, not the least of which is some of the evaluation contractors that we are now working with. You may know, The Urban Institute now has some huge study they are doing on the new federalism and looking at welfare and Medicaid policy in particular. They have the capacity to bring some data and they have noodled around with Medicaid data for probably as long as anybody else has at this point.
So, I think that there might be some other sources, besides HCFA, that you could go to, but I think we have -- what you would end up with if we could patch together some of our different systems is probably a reasonably good sense of the framework of states and how those characteristics would vary from one state to the next.
But, again, for some of that more qualitative or population-based data, unless we can get it from MSIS, we would probably have to go to some other sources, including the states themselves.
DR. IEZZONI: Richard, you had a comment?
DR. HARDING: I apologize for being late. U.S. Airways, you know, you are always glad to make it.
[Laughter.]
DR. IEZZONI: No, I disagree with that. U.S. Airways is my favorite airline.
DR. HARDING: It is about the only one I have. So, I use it. It was only 20 minutes late, so I can't gripe much.
DR. IEZZONI: Richard, could you just introduce yourself for everybody in the room.
DR. HARDING: Sure. I am Richard Harding. I am a child psychiatrist from South Carolina and work in private practice and in academic settings in administration there in hospital settings.
I apologize, again, for being late and you may have covered something that I -- but George brought up a point that I had thought about and, of course, being a child psychiatrist, that issue of mental health and substance abuse and so forth in children especially -- the issue is standards of how to evaluate a state's performance in the area of mental health is a tough one. I am not suggesting that you all have the answers or anything, but just wonder if -- how you are going to look after that issue.
In South Carolina, we just had a kind of a fiasco, where we had kind of a managed care setting in a department of juvenile justice area and the company who was providing that gave wonderful reports. It sounded like the best thing that ever happened in our state. Then when others went in and looked at it carefully, it wasn't quite that way.
I know that that is going to be a problem of accepting reports back from the states or from a carve out of the state to the Federal Government. Are we going to have developed in the future adequate guarantees that it won't just be a report back, a paper report, that we can really feel pretty confident with the things that we have contracted for, I guess, if that is the word, will be carried out?
I am sorry if that has already been --
DR. BLOCK: No, no, I don't think so and I think it is fair to say that the whole area of behavioral health and Medicaid managed care is one in which we have basically been applying a broad set of standards and tools that really emerge from a very different type of program that we had grown very accustomed to dealing with.
I think this is particularly true in mental health, but I think it does have some bearing on other special populations, as we get again to some of those services that may have been covered by Medicaid but not included in managed care and often in these programs we have states using some of their savings in a very explicit way to provide some additional services that they couldn't cover under Medicaid before. That is another data thing that I think you would want to look at if you look at some of those kinds of programs.
So, there is basic, you know, outcome and evaluation type of standards and I think that we are, along with everybody else, just at the beginning of trying to sort through the wide array of accreditation standards, data and other things that that community has generated and I hope there will be more sifting and consensus around those. In part, that is what makes it hard for us to sort of say this is a standard that makes sense to hold all states accountable to. Also, it partly goes back, I think, to your question, Elizabeth.
But having said that and what that means is just is there a national standard in that area that is meaningful and broadly accepted or is our job to try to work with states to ensure that they are coming up with better standards that are home grown and unique. I think that mental health is a particular example where that may be the more likely place that will be in the short term until some of those national standards start to gain more widespread acceptance.
I think there is another issue, though, that you are raising, which is important and that is that one of the things that we have insisted on in our approach to quality is that the basis for studying and evaluating the outcomes of programs from whatever different perspectives, there has to be a varied range of approaches to it, including that there have to be externally generated independent, validated kinds of studies. We have had in the basic HMO area for a long time and still will have under the new legislation a requirement for annual independent external review. Now, that has some shortcomings because they are only going to be as good as some of the things you ask them to do, but, nevertheless, you at least have the ability to have some independent assessment in addition to whatever it is that your contractor is providing to you.
I think that we think that that is important and I think Congress has basically agreed that they think that is important to maintain.
That requirement doesn't apply to the carve out programs because they aren't -- they don't fall into that full risk HMO category. So, that has been an area in which we have not had that requirement in place, but, again, I am hoping that some of these national bodies that are dealing with accreditation standards and some other standards in that area will come along and start to fill in, at least, in terms of being accepted as -- and we would start to use those as guidelines and possibly standards as more of that took shape.
So, I think that the need for some independent external review clearly is called for. We asked states to conduct a wide variety of studies and other ways to evaluate their programs, but ultimately -- and I guess this would be sort of my closing comment that I would hope you would include somehow in your report or whatever form this takes, that you could have the best data system in the world. If you don't have the appropriate purchaser and regulatory oversight of the data system or the system overall that you are purchasing, it won't do too much good, other than to provide fodder for other kinds of parties, who are interested in the stuff.
So, I really do think that the purchaser's definition of their role relative to that system is critical and I would say that states are all over the place in terms of to what degree they develop the skills, capacities and systems necessary to do that work.
So, again, I think it is very timely to come up with some recommendations in this area because it will help provide a foundation that they can work on.
DR. IEZZONI: Well, I think, Richard, your question actually has a really complex core to it on the data side because it suggests that we need auditable data, which suggests that we might need individual level data as the atom from which the larger fabric of the reports are built and that begins to get into issues of privacy and confidentiality. How we protect, you know, individuals especially in mental health and substance abuse programs, goes back to what our committee, you know, has been debating about for months on that level.
So, I think that these issues are going to be extremely complex, especially given what you have just told us about the carve out programs not having some of these external, independent, oversight functions mandated.
DR. MOR: Vince, a quick question.
DR. MOR: Okay. The last question -- you mentioned the notion of actually beginning to develop systems that could integrate across a data outside the traditional sort of health consumption or health utilization world; housing information, food stamps, you know, those kinds of fun things.
Are there any examples you know of of states that have actually, other than the HIV system I am familiar with in Maryland, that have tried to do that in other domain areas, either Stanley, you, or Rachel?
DR. NACHIMSON: South Carolina very much so. They have done quite a job of integrating data from a wide range of programs. They have set up a system so that you can sort of track individually what is going on with any one person across the wide range of social services.
DR. MOR: And this is the population of individuals who are Medicaid-eligible at some point in time?
DR. NACHIMSON: As well as other programs. It doesn't center --
DR. MOR: On the Medicaid.
DR. NACHIMSON: -- Medicaid. Right.
DR. MOR: I see. Any public program?
DR. NACHIMSON: It is a number of public programs. They didn't stick the DMV in there, did they? I thought they were even talking about some driving record stuff.
DR. HERZ: Yes, they have highway accident information, criminal justice system information.
DR. MOR: This is all at the micro level, at the individual level?
DR. NACHIMSON: Yes.
DR. IEZZONI: In Iowa, your state that seems to be your benchmark for Medicaid data, is that a similar situation that they also have data from other -- from the DMV, for example, and the other --
DR. NACHIMSON: Not that I am aware of.
DR. HERZ: Illinois is another state that has an integrated data system across social welfare, nutrition and Medicaid, as well, and that system has been put together by the University of Chicago, Chapin Hall for Children -- the Chapin Hall Center for Children. That is a very similar system, I think, to what they have in South Carolina, probably a good model for an integrated databases, as well as South Carolina.
DR. NACHIMSON: There was a foundation, I think, that was funding a number of these projects and I don't remember which one it was unfortunately.
DR. IEZZONI: Robert Wood Johnson.
DR. NACHIMSON: Okay. Robert Wood Johnson was funding in a number of states these types of integrated data approaches.
DR. BLOCK: And on a smaller scale, I think you would find even more states -- again, Maryland comes to mind just because I saw a presentation that was done recently, where they at least have come up with some pretty good links between Medicaid and WIC eligibility and participation and were able to generate some pretty interesting reports, I thought, in terms of county level analysis and where they could figure out that there were good links going on as opposed to less good links going on.
DR. NACHIMSON: In one of the New England states
-- I think it is Vermont, I am not sure -- it has a registry of children that encompasses not only immunization data and a number of other items that they are able to kind of track the progress of --
DR. BLOCK: They have actually incorporated education data and education outcomes, as well as some others now. What I don't know is what is the underlying data system that they have used or if they are just sort of slapping pieces of things together or if they really have an integrated database that supports those outcomes measures.
DR. NACHIMSON: They do have an integrated database. We got some documentation on it from the project officer.
DR. HERZ: ASPI(?) has put together a really impressive registry of state level efforts to integrate data across these different systems. It is on their Web site, which, unfortunately, I don't have the address with me,
but --
DR. IEZZONI: Our committee is on ASPI's Web site, if I recall.
DR. HERZ: It is a very impressive inventory of activities at the state level.
DR. IEZZONI: That is excellent, a very good clue.
Do any of the committee members have any final comments for Stanley and Rachel? This has been really a wonderful start for us and I really thank you.
DR. BLOCK: Well, thank you for inviting us and, Carolyn, thank you for inviting me. I am going to have to leave in a few minutes, although I think Stanley is going to stick around for awhile longer this morning.
But if there is anything that we can do to help in the future when you get down to trying to select some states and if you would like some feedback on that, we would certainly be happy to help you out with that.
DR. IEZZONI: Okay. Great. Thank you, both of you.
I am going to get a reputation for an unsympathetic chair because I would like to just continue right through this morning. You will notice that we don't have any breaks listed, but we have so much to hear from -- we might stand and stretch, maybe after the next panel, but let me just say that it is socially acceptable to get up and leave the room at any point when you want to do so. Okay?
So, with that in mind -- are you James or Jim?
DR. HADLEY: Jamie.
DR. IEZZONI: Jamie. Okay. Another alternative.
Jamie, you are -- do you have a new role at HCFA, too? We just learned that --
DR. HADLEY: New in name, I guess, because the office has changed from the Office of Research and Demonstrations to Office of Strategic Planning. Well, I shouldn't say it has changed. A lot of people who were in ORD are now in OSP. But it is not an identical kind of office because the demonstration part of ORD, the "D" in there, has been distributed, also a "d" word, throughout HCFA basically.
So, now, the focus is a little bit different. Obviously, the research is still there. There is intramural research, the Office of the Actuary has been integrated into it. The focus has shifted, but I am doing basically the same thing I was before. Life has not changed for me day to day.
DR. IEZZONI: Okay. We will hear something about that in a minute.
We have -- the two of you are talking, I guess, about monitoring evaluation effort for looking at Medicaid managed care. Are you comfortable with the order in which we have you listed? Yes. Lisa first? Okay. Great.
DR. HERZ: I think the order makes sense because I think my comments are pretty directed at sort of the nitty-gritty of data collection and information systems more, I think, from a state monitoring perspective and my guess is Jamie will have a lot more to say about the evaluations that HCFA has funded. So, I think it is probably a good order.
Just for those of you who are not familiar with the Medstat group, I just had a couple of introductory remarks to say about our organization. We specialize in health information and application of that information for improving the quality of health care and we basically do that through data systems, consulting and research.
We have done a lot of work with a federal and state government agencies, particularly with respect to Medicaid and Medicaid managed care and also on what I call the commercial side of our business, we also build decision support systems for state Medicaid programs and I have listed a number of them that we are working with now.
Based on my conversation with Carolyn Rimes in preparation for this meeting today, she basically asked me to talk about three things: to describe the types of technical assistance on encounter data issues that Medstat is currently giving to state Medicaid programs, to identify from that experience some of the common encounter data issues that are faced by states and health plans and then, finally, to try to -- for this committee to try to translate some of those lessons learned into some recommendations that you might consider.
The project that I want to focus on we call the State Health Care Reform Monitoring Project. Its purpose, again, is to provide technical assistance to HCFA in mostly 1115 waiver states and defining, obtaining, validating and then using encounter data for program monitoring and evaluation purposes for Medicaid managed care. It is a three year project, which we are a little over halfway into and our funding is through a HCFA Master Task Order Contract.
Now, that contract is under Rachel's group in the Center for Medicaid and State Operations. Our technical assistance to states is what we call showing, not doing and that is mainly so that we can provide them a lot of technical assistance to as many states as possible. An example would be developing a data validation system.
Within the scope of our contract in that context we would do things, like describe the key components of the process of data validation, outline some of the steps in a comprehensive plan, share the experiences of other states, which is of great interest to individual states and review and comment on the strengths and weaknesses of a state's existing plan for data validation.
Outside the scope of our contract includes things like medical record collection and abstraction, analysis of collector encounter data and also preparation of reports describing those findings, just to give you a sense of what we try to do in the context of this contract.
The next handout just lists for you the states that we have given technical assistance to so far. There are ten of them and we have provided varying levels of technical assistance to these states, mostly depending on the states' immediately priorities at the time that we are talking to them about technical assistance.
These states, I should mention, are different for the states that I listed in that earlier overhead that we provided some decision support services for.
Just to say a little bit about the kinds of technical assistance that we have provided to states, I have tried to break them into two categories here; uses of encounter data and also other technical issues involving data collection and measurement.
Performance measures for special populations, we have done a project for the State of Hawaii, trying to provide them with an inventory of clinical performance measures for the SSI population. They were very concerned that they weren't doing a good job understanding what was going on with their SSI population and, in particular, they wanted to have us identify for them some existing measures to look at mental health and mental health impairment.
So, we provided them with some information on some specific areas of mental illness, as well as -- they also had an interest in Down's syndrome and the HIV/AIDS population, which is also usually part of a state's SSI population.
Those we really used existing information systems to provide that information, which I am assuming you all are aware of the Conquest database. I think those are important systems to access when you are trying to identify measures for these populations, measures that have been used or that are under development. It is really quite a comprehensive system that I think might be useful to this committee.
Also, we have had some states ask us about access of service use in minority populations. Minnesota, in particular, was interested in having us help them come up with an analysis plan for their Asian and American Indian population. They were very concerned that these folks were not having the same kinds of access to services as other Medicaid beneficiaries.
So, we are trying to help them understand how best to measure race and ethnicity, which, of course, we are keeping them abreast of the activities of the committee, and helping them try to develop that analysis plan.
In terms of satisfying HCFA reporting requirements with encounter data, the more immediate example I have is, again, with Minnesota, where they are trying to understand how to complete the HCFA 416 report, which is a special report for looking at EPSDT services. It also documents referrals for treatment for problems who had been identified during EPSDT screens, which might be of interest to this committee.
But states are struggling with trying to determine how to use the encounter data that they are getting and fold it in with the fee-for-service experience to be able to accurately report on this form. So, that is a common request that we get to help states understand how to do that.
Then I don't want to go into a lot of detail on the rest of these, but just, again, to provide some examples of the kinds of technical assistance that we have provided to states.
Let me spend a few minutes talking about, based on our experience, some of the encounter data problems that states face and I think this will echo a lot of what has been said already and provide a little bit more detail about that. States don't always know what encounter data to collect. They are not sure what they need for ongoing monitoring and evaluation purposes. And they are not quite sure whether what they need is the same or different from what they had under fee-for-service, although I think the typical model is to start from what they had in the fee-for-service system and try to build on that for encounter data.
States also don't always know how to process encounter data. There are longstanding MMISs or Medicaid Measurement Information Systems have a lot of Intertet(?) editing checks that go on records when they enter the system and early experiences of many states were when they tried to put an encounter record through the MMIS, they were just being rejected left and right because of the lack of financial information.
Some of those very practical system adjustments need to be made and sometimes those are very complex when the systems are very big, very longstanding and given very limited state resources for doing this sort of thing makes it a difficult process.
The other point I would like to make about encounter data problems that states face, states may receive encounter data from plans months after waiver implementation. Why is that true? Usually for a couple of reasons in our experience in talking to states. Their initial focus is and needs to be very operational. They need to make sure that their enrollment systems and their payment systems are in place and working and sometimes that takes awhile to get that in place.
We mentioned earlier some contractual requirements on data. I will be saying a lot about that today. Plan RFPs and contracts may be inadequate. That might be the reason why they are having a difficult time getting encounter data from plans. Often, those contracts have limited or no encounter data requirements, especially with respect to very practical things, like the timeliness of when data needs to be submitted, the completeness of data when it is submitted, the medium on which data needs to be submitted.
In fact, George Washington just released a very comprehensive report on a lot of contractual issues, mostly focused on sort of programmatic issues, but they also had a component on data requirements that they reviewed in I think 35 or more states. They also identified a pretty serious lack of encounter data submission requirements in most managed care contracts in states.
When there are data requirements in contracts, they are often not enforced. I haven't quite figured out exactly why this is true, although I suspect, at least in some circumstances, especially in the initial stages of a waiver, states are hesitant to put a lot of pressure on plans about data, especially if those plans are sort of the only game in town and they don't have a lot of choices in terms of getting plans to take on Medicaid business. It is a very practical issue for states that they have to deal with.
Let me say a few things about the encounter data problems that plans face that I hope will be helpful for the understanding of this committee. Information systems have limitations for both the providers and the plans. On the provider side, they often have limited resources for data processing and submission. They also have trouble submitting data in an acceptable format, especially if they contract with multiple plans who have different data requirements.
This is a tremendous burden on these plans. This is very common sensical, but it makes a huge difference. For plans, they often trouble processing non-payment transactions, which is usually what an encounter record is all about. They often have very complex, multiple systems in place that were set up for administrative purposes that don't communicate with each other in an integrated data system type of way and, therefore, they have trouble reporting to the states the kind of information that the states need for their own monitoring purposes.
This is all getting better, but it is definitely still an issue out there for both plans and providers. A couple of other provider issues I wanted to mention, their willingness to report the plans. Under managed care there have been these early promises about no more paperwork and now we are not saying that anymore and it takes a lot of effort to get them to sort of change their frame of mind and say, okay, well, we can do this. But it is a tremendous obstacle to overcome with a lot of plans or providers, I should say.
Compensation arrangements, again, this is probably pretty obvious, but I think worth mentioning. If a provider is being capitated, they are not being paid to submit an encounter. So, incentives to submit encounters are not very great, unless they are being paid to submit the encounters, which some plans have chosen to do to get the data from those providers.
In terms of plan issues, I think they are particularly relevant to Medicaid managed care and particularly relevant to the carve outs that we talked about earlier when they are trying to put together managed care programs for special populations.
Many states when they want to do that, they want, too, involved in those managed care programs the traditional providers of care to these special populations. These traditional providers don't often participate in standard managed care and, so, the states try to set it up to allow them to form their own managed care organizations to be able to continue to provide services.
They are great at providing care. They are not always so great about running a managed care business. That is sometimes where the data issues then will come in in terms of providing that information back to the states. They need to understand how these programs are working.
Also, there are a lot of commercial who are new to Medicaid and their problems -- so, in a sense, they are also kind of a start-up and they have particular problems dealing with eligibility in Medicaid and the on/off nature of enrollment. Their eligibility and enrollment systems have a very hard time dealing with Medicaid and they are not quite -- haven't quite resolved those issues yet.
We mentioned -- this, again, is in the context of carve out services. Data requirements and provider contracts are often inadequate. Plans, when they subcontract out things like lab and x-ray, behavioral health, pharmacy services, if they don't -- I mean, they are contracting with those vendors. If they don't have in their subcontracts very specific data requirements, you will often see when a plan transmits information back to the state, big holes in these carve out services because they can't get it from their vendors.
Then, finally, I just wanted to mention leverage over providers varies by plan type and the comment I want to make here is mostly with respect to the exclusive nature of contracting with providers. If a plan has exclusive contracting with a set of providers, in other words, if those providers can't contract with any other managed care plan, then those plans have quite a bit of control, not only over the kinds of services and the treatment protocols that those providers are implementing, but also data requirements.
So, the standard staff model HMO does a pretty good job of getting the kind of data that it needs from its providers as opposed to situations where it is non-exclusive contracting with a provider, where the providers -- and many providers do contract with eight, nine, ten different plans and the individual plans control over that provider in terms of data submission can be pretty weak. That is a very practical issue that affects the transmission of data to states.
These state and plan issues won't disappear with national data standards, I don't believe, but I do think coming up with data standards will go a long way towards reducing some of the burden that plans and providers feel by these many different standards from many different purchasers and I think in the long run it will be a help. It will improve the quality of the data and the completeness of the data to have more national standards than we currently have.
I am often asked to give presentations where I talk about all these problems and I always hate to end on that note because there is actually a lot of states, who have made a substantial amount of progress in terms of collecting and using encounter data. I just wanted to provide some brief examples of some of the progress.
These problems are not insurmountable and these are a few of the states that I think are definitely on the road to being where we want them to be. Minnesota, for example, they have an 1115 waiver for a very long time, but it has actually only been quite recently that they have been encounter level data from their plans. In the past, they have been monitoring services under Medicaid managed care through aggregate reports that the plans had submitted to them.
But this year, they decided to make a very concerted effort to get the data in and they have started to do that. So, for the past six months, they have gotten a little over a million records that they have accepted. They have received more than that, but they have accepted a little over a million records.
Just as a practical issue, I think what they found in the past was a lot of resistance to encounter data submission from the plans, much along the lines of what I described earlier. They found that a letter from the Medicaid director to the plan CEOs emphasizing the importance of encounter data appeared to have made a lot of difference and that is why they are getting a lot of information in now.
There are plans for analysis. I mentioned a couple of them earlier, looking at minority groups. They also want to go beyond the HCFA 416 report that is required for EPSDT services and look at other kinds of preventive care that are being given to children under Medicaid in these plans.
Just to skip down to Tennessee because Tennessee has had a very rocky history, but they appear to be doing -- they have made great, great progress, at least for their own internal monitoring purposes. Maybe you can say something about what they have submitted for the evaluation. But they have data back to the beginning of their demonstration. They have over 117 million records to date. They get monthly submission from their plans now. So, they really seem to be on the road to being able to monitor and evaluate their demonstration.
They have lots of plans for analysis. They are producing key indicator reports on enrollment and utilization and expenditures under TennCare. They have done an infant mortality study, where they link their encounter records with birth certificate data to look at the effects of TennCare on the trend in infant mortality over time. They do a very targeted quality improvement studies that are identified by their medical directors, issues that they want to focus on. And they talk to their plans about these a lot to get that information.
They have a very nice Web site where you can find a lot of these reports. They have some infant mortality reports on their Web site. So, they have made a lot of progress.
Why don't I stop there. I just want to point out things are happening. There are some success stories out there, which isn't to say there isn't more work that needs to be done. Obviously, there is. But it is happening.
So, finally, in closing, I just have a couple of areas that I would like to recommend that the national committee and the subcommittee take on or pay attention to.
I think articulating the importance of encounter data to monitor care for special populations is very important and I think the importance here goes beyond just meeting reporting requirements. If you want to get state and plan buy-in to the data standards that you would like to propose, these data standards need to be relevant to that. They need to address their own monitoring issues not just -- sort of bigger evaluation purposes. And I think that is possible to do.
I think a lot of what I have seen put out by the national committee is things that the states and the plans need, but sometimes they need to be told why they need it and how it can be useful to them. I think if you all can focus on that, especially in terms of special populations, I think that would be a big help.
Also, to establish encounter standards for monitoring care for special populations, I just had a couple of comments I wanted to make here. I think, what I haven't seen so far and maybe it has been addressed, I think it is important to add a family identifier to the core data elements that are being considered for standardization and I say that because my context of a special population is children. I think there is a continuing need to look at, for example, prenatal technologies and other kinds of interventions and their effects on newborn health, as well as more work on the clinical and behavioral risks that mothers have that can affect newborn health.
It will be very difficult to look at those kinds of issues and questions if there isn't a reliable way in which you can put those moms and babies together. I think the identifiers that are proposed now, I don't believe, do that and I think -- we had a discussion earlier -- especially if you want to talk about integrated data systems where you are moving beyond just health care delivery information to social welfare, all of those issues, I think there might be some lessons that you can take from AFDC and TANAF(?) for example.
I tried to find out what they are doing about personal identifiers and family identifiers through the TANAF program. I wasn't able to get a specific answer in time for this meeting, but I have to imagine that they are thinking about this and trying to address it. So, maybe some conversations with them perhaps would sort of flesh out logistics of coming up with a family identifier, which I think might be important for lots of program evaluation purposes.
The only thing I want to say about indicators of health status and outcomes and race/ethnicity measures, I know that these things are being considered and included. I just want to reaffirm that I think that is the right direction. These are not traditional parts of information systems that plans on the provider level go. So, I would just recommend that very complete and very detailed specifications be provided for these things, otherwise you will be getting a lot of apples and oranges and you won't know what to do with them.
Finally, I drew a line here in this last handout because I think the last two things are probably not in the official purview of the committee, but these are things states ask us about all the time and they would greatly benefit from some attention either by the committee or maybe by the Department of Health and Human Services. If somebody could take this on, it would be a big help.
Standardizing methods for assessing and ensuring encounter data quality, states are -- much of our work focuses on that under the contract I described earlier, but some standardized official methods for this, I think, would be helpful and then, finally, creating a national repository for performance benchmarks. States are always asking us, you know, what is a good number, what should be trying to hit here and what are other states hitting on these numbers.
So, I think that would be a big help as well.
I will close there.
DR. IEZZONI: Lisa, great.
Before I move to Jamie, I just would like to follow up on the family indicator because I saw a number of heads nodding and while we are hot on that -- Richard, you had a comment on that?
DR. HARDING: I think I know what you mean, but when you say "family," what do you mean?
DR. HERZ: Well, I guess the easiest example is the one I gave before, when you are trying to determine the relationship between maternal behaviors and newborn health. So, I guess at sort of the smallest level, I think, some kind of identifier that permits reliable linking between mothers and children, but I think there are bigger questions than that, which we touched on earlier. And Illinois has done this in the integrated database that they are focusing on. In fact, their efforts began with trying to track children in a foster care system. And that foster care is, of course, focused on a whole family.
So, they do -- I don't know the specifics of the identifier that they use, but I think it is important to be able to tie together, I guess, parents and children. I guess that is what I mean, in terms of a family identifier, so that you can look at the obvious questions about prenatal care in newborn health, but I think there are a lot bigger questions that that kind of indicator would facilitate analysis of.
Right now, I think what the committee is working with is unique personal identifiers and I believe there is another indicator that says the relationship of that person to the insured subscriber, I believe, but that is not quite going to get you a family identifier in the sense that I am trying to describe.
Now, the logistics of assigning a family identifier, I think, require a lot of thought and I don't have a lot of good answers about that now, but I would be very interested in having conversations about that. That is why I was trying to mention before about under TANAF and formerly under AFDC -- under the former AFDC program, they did have case identifiers, which were basically mothers and children linked together. That case identifier was often imbedded in the beneficiary ID, for example, in many states, but I think using that at least as a model to start from might be a help.
DR. IEZZONI: Great.
Marjorie.
MS. GREENBERG: Just following up a little bit with that, if you could, you know, solve all the different issues about confidentiality, et cetera, but I think in having the -- and you had a unique identifier for each person -- having the mother's identifier on the child records go a long way towards achieving what you want or are you thinking of something more complex?
DR. HERZ: I think that would help in that really small focus, the need for a family identifier. But I think if you want to do more of the sort of integrated service analyses, where you are trying to look at families who are users of multiple support services, especially publicly funded support services, I think you would need to move beyond that concept to a family identifier.
So, I guess I am thinking of sort of a nuclear family. I guess that is what I had in mind.
DR. HARDING: Pardon me. Like a family would have like a social security number with some additional thing that would say I am -- this number means I am a Harding and then another digit or something would put me in my place in the Harding family, so to speak?
DR. HERZ: I think that would do it, but somehow there has to be some common piece of that -- some common piece of that identifier that would be carried by the families or the members, that you would want to keep together. I mean, the logistics of this, I think, are more complicated than the personal identifier.
DR. IEZZONI: But that is a great issue to bring to our attention because kids is one of our special populations that we are very interested in and finding out who they are living with, which may not be biological relatives might be very important.
DR. CLARK: I guess the Medicaid analogy would be in the HIC and the BIC. The HIC is the health insurance claim number and then BIC is the beneficiary information something or other. One of the big problems -- and I am not an expert in the use of Medicare data, but I hear that one of the big problems in using Medicare data is the BIC is constantly changing. So, you know, just defining what -- number one, defining what the family unit is --
[Multiple discussions.]
-- and then trying to keep up with all these changes.
DR. AMARO: It might be easier to really track the mother/child, you know, to connect that into a broader family identifier because that is going to be constantly changing and --
DR. HERZ: Yes, that is going to be a much bigger challenge. Right.
DR. IEZZONI: Let's move on. Are there any other questions of clarification for Lisa at this point?
DR. HARDING: Could we get a copy of that George Washington study?
DR. IEZZONI: Well, there is actually -- Richard I have been making notes. There are a number of reports that have been mentioned this morning, the G.W. report, you know, there is a number of them. Let's keep track of those and then this afternoon, as we begin to talk as a group about where we are heading, let's make sure we get all these reports.
MS. GREENBERG: Just to mention for future reference of the subcommittee that the Centers for Disease Control and Prevention is working with G.W. on developing contracting specs for getting public health and prevention types of goals into the -- and services, into managed care contracts, very much emphasizing what you were talking about. A lot of this is not in the contract and that just kind of -- it all goes from there.
One of the elements is actually developing contract specs for data requirements, not only individual data requirements, but information kind of infrastructure requirements. So, that is something you might want to --
DR. IEZZONI: We do need to know about that.
Elizabeth, did you have a comment?
MS. WARD: No.
DR. IEZZONI: Hortensia?
DR. AMARO: You mentioned creating a national repository for performance benchmarks. Is that in relation to benchmarks around performance of the managed care system or, I mean --
DR. HERZ: Yes.
DR. AMARO: Is anybody working on that right now?
DR. HERZ: Not that I am aware of. I think, what I had in mind, for example, if HCFA, for example, ends up requiring a subset of HEATUS measures for Medicaid managed care plan, having a repository that shows what those values were on a year-to-year basis by state and perhaps by program type within states, I think, would be helpful for plans and states to understand, well, sort of what is the range of experience. Where do I need to focus my efforts to try to have better performance, given what other state plans are able to achieve.
That is sort of what I had in mind. And that is what states often ask us about. They don't know what is a good number to try to hit. You can take the Healthy People 2000, for example --
DR. AMARO: That is what I am thinking, whether anybody is thinking about developing any further, next 2020.
DR. HERZ: Yes. Not that I am aware of but that is sort of thing -- I think, that is sort of what I had in mind. So that there -- but that is sort of numbers that we want to hit. I don't know that it is so much experience in achieving those kinds of outcomes. So, I think what states want to know is what are other -- how is this working in other places.
DR. IEZZONI: Jamie, you seem to be having a technological fight there on your hands.
DR. HADLEY: Yes, I am.
[Pause.]
Again, I am Jamie Hadley from the Office of Strategic Planning at the new HCFA. And what the old Office of Research and Demonstration was charged with and what OSP is charged with is one of their tasks is evaluation. So, when the 1115 waivers started on being granted, one of the jobs we had was to figure out what we were going to do to evaluate these states.
We had a couple of choices, I guess. One option would have been to go with the 1915 B model, where we had the states, you know, contract out and basically do their own evaluations. And I got in a little late, but I think as Rachel probably mentioned that those have variable results. Some of those are good. Some of them are mediocre. Some of them are really awful.
Especially in the beginning, the 1115 states were -- we considered them very research oriented. We really wanted to see what was going to happen in these states. So, we wanted to be sure we came up with a good, high quality, comprehensive evaluation of each of these.
Another option would have been to do it in house, but we really didn't have the staff to do the surveys in the scope that we needed to do. So, the option we chose was to contract out with some large research firms and we made the decision at first, at least --
[Technical difficulties.]
Okay. Anyway, our first thought was that would go for some deficiencies and group the states as they were coming in. They were coming in at a pretty high rate of speed in 1994 and 1995 and it just seemed as if they would be too expensive and too time consuming to award a contract for every single state. So, what we did for the first evaluation was to -- we decided we will group five of these together and make an award. And in September 1994, we made an award to Mathematica Policy Research and their subcontractors, Urban Institute and Systemetrics, to look at the impact of five of these demonstrations.
At that time, we had Hawaii's Health Quest, Rhode Island's RiteCare and Tennessee's TennCare, three of the first states that they were granted waivers and were going operational. Later, we added Oklahoma's Sooner Care and then Maryland's plan, which didn't have a name when I made up this slide, I think, has a name now, but I am not sure what their newest name is.
And at the same time, we awarded a separate contract to evaluate the Oregon demonstration that -- well, let me cover, I guess, the second five state evaluation first, since they are both on the slide. We also have what we call the second five state evaluation because it was awarded a year later, which was awarded to The Urban Institute and their subcontractor, Mathematica Policy Research and they are looking at also five state demonstrations, Minnesota, the great state of Los Angeles, Vermont, Illinois and actually New York. On the slide it says one other state to be identified, but recently New York was approved.
We have decided to add New York into that evaluation group. There were some states, though, that just weren't easily grouped. Oregon ended up getting its own evaluation. We thought that they deserved a separate contract since the demonstration involved, at least at that time, an employer component and a priority list, features that really weren't in common with any of the other states, plus we wanted to take a much closer look at quality in Oregon because of the priority list. So, they got their separate evaluation.
Delaware's Diamond State Health Plan got a separate evaluation for a different reason. We already had an evaluation going on in that state, a children's program, and thought an efficient way to handle that would be just to convert that evaluation to an evaluation of their 1115 study.
To give you an idea of magnitude of these things, the two five state evaluations are both roughly in the range of about $6 million over five years. It seems like a lot of money until you think of looking at five states and doing a really comprehensive evaluation of those five states. It is surprising how that money doesn't go as far as you would like.
The Oregon evaluation is about four -- right into four and a half million just for Oregon, again, because we are looking in much more detail at quality. Medical record reviews cost a lot of money. Doing a different series of surveys there and it is more expensive.
Also, we have got a -- HCFA is a primary sponsor of these evaluations, but I should also mention that ASPI is putting a significant amount of money into the first five state evaluation, primarily Tennessee, and into the organ evaluation to look at disability issues in those two. So, we have some special surveys in there, some special case studies that were going on.
Also, SAMHSA has put money in to look at mental health in much more detail in the first five state evaluation and they may be interested in doing some funding in the second five state as well there. Doing some interesting things, not only looking more in depth at encounter data from those states on mental health and substance abuse issues, but at least in the first five state evaluations, in Tennessee, we are doing something a little interesting. We are doing some longitudinal focus groups and we are looking at people over time to see what kind of services they use and what their experiences are not only within the range of mental health services that are covered by Medicaid because that is all we would end up getting from encounter data, but we are also very interested in what kind of services might they be using outside of that, because especially with mental health there are so many other kinds of agencies that provide services.
So that if we see no increase or a decline in utilization, it could mean a lot of things. It could mean they are getting services somewhere else. It may not be the managed care impact.
In all the evaluations we have some things in common. We are looking at two primary impact issues. What are the impacts of the expansion of eligibility, which has taken place in most of the states, not all, but in most? And what are the impacts of the increased use of managed care?
Obviously, we are having to use different kinds of comparison groups to look at each of those. When we looked at the expansion of eligibility -- well, we looked at increased use of managed care -- that is an easier one to start with, I guess -- there it is a little more of a before and after comparison. Most of the states that didn't have extensive managed care experience, we can look at what -- you know, what the experiences of people were in the pre period and then post. When we are looking at expansion of eligibility, we have got to do some post comparison groups, as well as the pre post comparison.
So, those are the two basic areas. Then within those we are sort of looking at a standard set, using cost of services and that is in terms of the state, Federal Government, out-of-pocket costs and it impacts on providers, access to care, satisfaction, quality issues, outcomes, health status, morbidity and mortality, process of care, continuity of care, timely hospitalization, hospital admission rates.
Now, that varies a bit from state to state, as I mentioned. Doing a lot more in Oregon with quality and looking at medical record reviews. Most of the other states we are looking at quality primarily through the encounter data.
We are doing case study interviews in each state with the evaluators going into each state interviewing people in the state government, different provider groups, individual providers, advocacy groups, anybody who has an interest in the demonstrations basically. They occur over a period of time. There is the implementation one that, you know, we are doing right after the -- probably about a year after the waiver is granted for each state and then later on doing updates for each of those.
In the first five state evaluation we have done -- in terms of reports that are in, we have a report right now on basically the first set of case study interviews for Tennessee, Rhode Island and Hawaii that looks at the implementation of the waivers in those three states.
We don't have any startling findings yet and things like that, but it is a good basis, I think, for anybody who is going to be following these evaluations along. It is good to know what kind of changes the state had to make, reactions of providers in the state and the problems the states have with getting data systems on line. It gives you a basis of knowledge to understand the other reports that will be coming along.
On each of the states we are also doing focus groups. They are used partly for primary data, partly to guide the construction of survey instruments. The encounter data is really the guts of these evaluations, state MMIS systems, surveys of each of the evaluations, I think, with the exception of the Delaware one. We will have surveys of beneficiaries and providers and/or providers, I should say. Not everyone has providers but everyone has a beneficiary survey. And then medical record reviews in some of the states.
For encounter data, when each of the waivers were approved, there is a special term and condition for each of them that required that the states submit encounter data. The special term and condition didn't specify what encounter data had to be submitted, what form it had to be submitted in, who it had to be submitted to any of those details.
Afterwards, each of the states were supplied with a set of minimum encounter data requirements. That is basically ambulatory and inpatient basic kinds of information. We kept it very, very minimal. There was a lot of discussion about how extensive to make it. Our minimum requirements really were minimal. We thought we could do something with this if we got this from each of the states.
Each of the states fortunately plan on collecting a lot more extensive data than what is up there. Now, the problem is between planning and actually doing and submitting data to us. At this point, we have good encounter data from Tennessee and as you mentioned, not only are they using it themselves, but they have supplied us with a couple of years of what looks like good usable data and we are optimistic.
Rhode Island, I think, will be providing us with some good data eventually. Rhode Island is in a unique situation. I guess this is the first time they have actually had an automated data system.
PARTICIPANT: That is true. It never existed before.
DR. HADLEY: Yes. They have had a double struggle, not only with the encounter data and, you know, just struggling with the whole idea of getting data from capitated plans, but just automating their system. So, they have been working very hard on it and we are really helpful we are going to get some good stuff from Rhode Island.
DR. MOR: You will get it. My fellows are already out there.
DR. HADLEY: Okay. Well, you probably know how good it is better than I do then. But, I mean, you had some very ambitious data plans. So, we are hopeful there.
Hawaii, we are a little unsure of right now. Each one of these states is a little different. Hawaii is in sort of a strange position now that they -- they had some labor negotiation problems with their contractor for their data and my understanding is our encounter data is actually sitting on somebody's desk in Hawaii and has been for about six or eight months now because it was ready to be shipped out within a couple of days at the time the contract negotiations fell through.
Everything stopped and our data is still there somewhere I guess. I have been trying to work out a trip to Hawaii and get that data but I haven't convinced anybody that that is necessary. So, I don't know when we are going to get Hawaii data.
Oklahoma, we haven't asked for anything yet really. They have just started. It is too soon. Maryland is too soon from the first five state evaluation. That is the evaluation I am most involved with. I know we are getting decent data at least at this point from Oregon. That is also very good. That was on your list.
Minnesota, I would imagine for the second five state, we are probably starting to or going to get some data soon, but I don't know about the other states. So, it is -- I don't feel great about encounter data because we are three years into a five year evaluation and we are just starting to get a trickle of encounter data and I don't know yet how we are going to end up handling the evaluations. We are, obviously, not going to have at least two years of encounter data for each state that we planned on having for our studies.
We are going to have to make some adjustments to that. In fact, one of the things we have discovered in scheduling these evaluations is that it probably doesn't make sense to group states together because our idea, I think, was that the states would come on line at about the same time. They would develop it about the same time. Things would flow, you know, kind of in groups.
It hasn't. Each state is very different. So, we are not sure what we are going to do from here on out to evaluate other states that come on line. I know Stan's group is working on coming up, you know, ways to help the states out with being ready to and able supply encounter data. We are looking into some possibilities of contracts that would, you know, work with someone to just perhaps build an encounter database, you know, for future evaluators to work with or even in house researchers.
It doesn't seem practical or efficient to do full scale evaluations of every state that comes on line. First, not every state is doing something shockingly new and really interesting. At this point, all of them are starting to look similar. And we may not learn that much more and it may make sense to have the states start to do some of their own evaluations from here on out.
But we are thinking through a lot of possibilities at this point. We are not really sure what direction we are going to go. I think our big focus now is trying to get a good core set of encounter data so we can do something because whatever we do, we are going to need that.
We are still very much in an exploratory phase with that. We are looking at the data we are getting from the states, none of which is really comparable from one state to the other. We can't really combine it across states. I know Stan's group is looking into that. There are some people in the office -- some researchers in OSP that are starting to look into that, too, to see if we can integrate that into the MSIS kind of format. But we don't really know if we can squeeze this encounter data into that fee for service type format yet either.
So, a lot of work remains to be done and it all revolves around encounter data. Something that all of you are interested in is the data group, too.
DR. IEZZONI: Okay. Jamie, this has been sobering, but informative.
Are your contractors, Mathematica, Urban, Urban, Mathematic, Share, RTI, RTI Share or HER, I guess, not Share, are they instructed at all to look at data systems within the states to support quality?
DR. HADLEY: There is money in each of the contracts to provide technical assistance to the states. Some of the states overlap with the work that Medstat is doing and some of them -- the contractors are doing that technical assistance without Medstat.
DR. IEZZONI: If we wanted to ask Mathematic, for example, to come and speak to us about data systems for evaluating --
DR. HADLEY: They would be willing to do that.
DR. IEZZONI: They would have the knowledge based on the activities that they are contracted to do for their evaluation. Okay.
DR. HADLEY: Sue Donns(?) is a good contact person from Mathematica.
[Multiple discussions.]
DR. RAJAN: I would probably go to Sue before --
[Multiple discussions.]
DR. HADLEY: Yes. She has worked with all the states in detail and can really help you out with a lot of individual elements and where they are having problems.
DR. IEZZONI: Okay. Good.
DR. HADLEY: But each state is -- it is unique. It is hard to generalize about the kinds of -- and I guess something nobody has really mentioned is that these states are really running the demonstrations on a shoestring staff. In a lot of cases, they just don't have people to do everything they need to do. Data is important and I think they know it is important, but they need to get it up and operating and monitoring the thing and it is not always --
DR. IEZZONI: Can I just -- you keep calling these demonstrations. We are interested in Medicaid managed care. Are these demonstrations of Medicaid managed care that will go away at some point? Or is this -- is what you are evaluating Medicaid managed care?
DR. NACHIMSON: The experiments that were allowed the 1115 waivers are basically where certain standard Medicaid requirements were waived so that states could implement these broad managed care initiatives expanded eligibility in services and things like that.
Technically, they had a five year --
DR. HADLEY: I can't imagine them going away and saying -- I can't imagine that we looked at and said, you know, I don't think managed care worked very well there. Let's go back to fee-for-service.
DR. NACHIMSON: Technically, they had a five year life and the demos would need to be renewed. Arizona, I guess, is a perfect example where they initiated --
[Multiple discussions.]
-- demonstration that started in 1982 and continues to this day.
DR. CLARK: They did get congressional legislation for that.
DR. HADLEY: And there are probably other bits and pieces of what we are waiving now that will eventually be legislated, I think, and won't be waivers in the future. So, it is hard to say what form it will take, but, no, I can't imagine these just ending in five years and going back to something.
DR. IEZZONI: But what these are are basically the managed care programs in these particular --
DR. HADLEY: These are the new programs.
DR. IEZZONI: Okay. So, we will get rid of the word "demonstration" for what our committee will be doing. Is that okay?
DR. NACHIMSON: But there states in which there are not these 1115 for demonstrations that have managed care programs.
DR. HADLEY: And what is important to realize, too, is in the non-demonstration states, there aren't any requirements for data in those and at least -- even though we are getting some trickles of data, you know, some of the states Stan mentioned are just ones that happened to be providing good data, but we haven't been working with -- pushing them.
DR. NACHIMSON: Well, there is no requirement for evaluations in these other types of --
DR. IEZZONI: So, the demonstration in states have the requirement for evaluation and then other ones don't.
DR. HADLEY: Right.
DR. AMARO: But they didn't receive any resources?
DR. HADLEY: They are not doing their own evaluations. I mean, they may, but we didn't fund them to do their own evaluations. It is an external evaluation in each of the states funded by HCFA.
DR. AMARO: But are they -- you were mentioning that they are impacted in that they have to provide -- in providing the data that requires some person power and --
DR. HADLEY: There are no separate funds, as far as I know, set aside for them to provide that data. It is just part of the program. In the past, they provided claims data. So, we have asked them to provide encounter data instead. From the state's perspective, I think they are still providing data. Unfortunately, it means a new data system and a new way of doing it in a lot of states. It is not actually a new task.
For the HMOs in a lot of cases, though, it is a new thing that they are doing, where they weren't providing data on those people to anybody else, perhaps.
MS. GREENBERG: Just, for example, in the top ten states that Rachel gave us in her handout, only Tennessee and California, I guess more recent, are 1115 waivers. So, I guess, because they went into managed care on their own -- well, all the rest have 1915 waivers, but those -- there is no requirement for encounter data in 1915 and no evaluation requirement either.
DR. HADLEY: Well, there is an evaluation requirement. 1915Bs have to do a yearly -- is it every year or every two years?
DR. NACHIMSON: I am not sure -- it is not really a -- it is not an evaluation requirement in the same sense.
DR. HADLEY: Right. They have to justify their waiver each time. It is not as extensive --
PARTICIPANT: Isn't the Congress about to make a change --
DR. HADLEY: That might happen.
PARTICIPANT: You are describing the situation as of today, which may change in 30 days.
DR. HADLEY: That is right. That is correct.
DR. CLARK: Actually, in California, that is not a statewide --
DR. HADLEY: No, actually the California one is just Los Angeles. It is a little different animal from all the rest.
DR. IEZZONI: Okay. We are running a little bit behind on our schedule, but, Richard, you had a -- okay -- yes, George.
MR. VAN AMBURG: Can you give us an idea of what measures of evaluation is -- you say they are going to measure access to care. What are they going to use for measures?
DR. HADLEY: Well, some of that will come from surveying the beneficiaries themselves, you know, asking about -- you know, for access, a lot of the standard kinds of measures, you know, waiting times for appointments, you know, distance they have to go, access to primary care specialists. Have you ever wanted a service that you couldn't get? You know, those kinds of things. So, there is a whole set of basic access kinds of questions we always use in the surveys.
So, that kind of information will be -- wherever we can we use encounter data to look at use of specialist care. It is always -- whenever you are evaluating managed care, though, it is always hard to sort out things that have changed because you have got managed care now and, you know, what was the necessary and what was the unnecessary care?
So, we learn an awful lot on the survey data, I think, for access, probably more than the encounter data, asking questions. Then again comparing that where we can to a fee-for-service kind of equivalent.
DR. MOR: One question on the surveys. In all the states will there be special designated oversampling of at risk populations or is this just going to be general?
DR. HADLEY: I would say there will be some in each of the states, but --
PARTICIPANT: I think it would depend on the demonstration.
DR. HADLEY: It varied, though, in the state which populations we are going to be looking at. Rhode Island is, obviously, unusual, too, with their population. I don't know if any of them are typical now that I think about it. But we are looking at different kinds of populations, I think, is the safest answer.
MS. GREENBERG: Can you answer a very quick question about encounter data? The states that you are hopeful you are going to get some encounter data, are you expecting that minimum data set or --
DR. HADLEY: I think it will be well beyond the minimum data set.
MS. GREENBERG: -- was the McData(?) data set shared with them, which is --
DR. HADLEY: Well, actually the minimum data set is the McData set. The first two columns in the McData set basically, it is the inpatient and outpatient, not the pharmaceutical and not the --
MS. GREENBERG: Well, but like the minimum data set has one diagnosis and things like that, which the McData set had more in it.
DR. HADLEY: The McData set, I think, only has two diagnoses because there was a lot of discussion I know with Sue Dodds saying that, gee, even two is pretty unacceptable to do much of anything with. So, I think from the states where we are getting diagnosis, it varies from state to state, but I think it is more like, you know, we are getting three, four -- you know, we are getting -- the data is pretty decent where we are getting it.
MS. GREENBERG: Okay. More than that minimum --
DR. HADLEY: Yes, right.
DR. IEZZONI: Any other comments from the committee at this point?
[There was no response.]
Well, again, sobering but informative.
DR. HADLEY: Probably you or someone should be on the list to receive reports as they come out.
DR. IEZZONI: I have made a list of those as some of the reports and I think we will be wanting to hear directly from the investigators, some of the investigators involved in those reports.
Okay. Great.
Rachel was actually quite eloquent in talking during her presentation earlier this morning about our need to look at the dual eligibles and how that kind of a group that has fallen between the cracks and been in a bit of a nether world. Nobody has really looked at them, except, I guess, we have two people here who know something about this.
Could you just pronounce your first name?
DR. RAJAN: Shruiti.
DR. IEZZONI: Shruiti and William or Bill or Will or Bill. Okay. So, why don't we during the end of our morning session hear from the two of you. I guess, Bill, you are listed first. Is that okay?
DR. CLARK: Okay. I will be brief.
I guess, I will go over what I intended to do and see if that sounds like what the committee might want to hear. I was thinking about just talking a little bit about the dual eligibility issues, talk a little bit about some of the major policy issues that are sort of under discussion right now and then talk a little bit about some of the data issues that we are looking at down the road, if that sounds reasonable.
I just don't know how much background -- I know that some of you are from the New England states where this is very hot and -- but I guess that is what I would like to do if that works out for everybody.
DR. IEZZONI: This has been an educational morning. So, I think that that sounds good.
DR. CLARK: My name is Bill Clark. I am with the Division of Health Systems Research in the Office of Strategic Planning in the new Health Care Financing Administration.
I am project officer right now for a number of states that are requesting waivers for Medicare and Medicaid under a demonstration authority to test integrated approaches to managed care for people who are dually entitled for Medicare and Medicaid.
Just by way of background, really there are now only two what I would call comprehensive models of care for dually entitled beneficiaries, one of which is ONLOC(?), which is what those characters say. If they are oriented correctly, which I am not entirely clear, since I don't speak Chinese -- they are? Very good. Thank you.
I think I finally got that right. I have had several presentations where people came up to me later and said you have got it upside down and backwards. And I really didn't know.
Then the other one actually started this last April, which is the Minnesota Senior Health Options Program. So, there are really two models out there probably serving maybe 2,000 people total nationwide, maybe 3,000, that are consciously designed models serving dually entitled beneficiaries.
Now, ONLOC -- the reason I like to use this overhead -- it has two meanings, one of which I learned on an airplane somewhere, but the first one, which many of you may have heard in one context or another is peaceful, happy abode and the other meaning is the total absence of financial worry. While that may have marketing draw in Chinatown in San Francisco, I think it is actually a very interesting kind of goal for the kinds of systems that we designed for dually entitled beneficiaries because we know that these are individuals who are, by definition, impoverished and the issue of financial input is key to their ability to use care.
So, the interesting thing about ONLOC is that really combines three aspects in making a successful model. First of all, sort of on the financing end, it combines Medicare and Medicaid funding through two separate funding streams and then when it is in the plans' purview, they basically are able to launder the money any way they want to provide whatever services they want, as long as they are by Medicare or Medicaid certified providers.
So that if you are getting money on your capitation to cover hospitalization, if you have lower hospital utilization, then you can put that money into community support services, transportation, whatever else you might want. But the three sort of service components of the model that are interesting and I think are unique are that they focus on adult day care as the core service site for bringing in the physician care, the dental care, the occupational therapy, all the therapy services.
Everything is brought into an adult day center for the most part. They also have home-based services as well. Then, secondly, is this concept of multidisciplinary team, which involves a weekly meeting of all the professionals involved in the care delivery, including the physician, the driver, the day care, social worker, all that. And, finally, the part that is not generally talked about very much, but I think is really key is the housing itself is also part of their overall concept.
In many of the sites, the assisted living or whatever you call kind of housing support is available to members. Some people have called this model life care for the poor as opposed to the CCRC type of movement. I think in many ways that describes it.
The Minnesota model I am not going to really get into right now, but I wanted to, as a way of rounding out our sort of background on the dual eligibility issue, this appeared actually just after the Kennedy-Kassebaum law was passed and I thought it just really showed a lot about our current perceptions of dual eligibility or our current perceptions of long term care in America. To me, it showed that the inevitable spend down process to access long term care, the high cost of access, the drawbridge effect, the heavily institutionalized bias of our system -- notice the castle -- and the total dependency of our beneficiaries as seen by the nurse helping somebody walk and then someone pushing a wheelchair and then the concept of no return. Once that drawbridge is up, forget about it.
What it doesn't show is that behind this lies an incredible entrenched bureaucratic tangle that has to be sorted out and in my personal belief, it cannot be addressed until statutes are changed because I don't think waivers can really get at the bottom of this problem.
But it doesn't show beneficiary confusion over health insurance coverage in a transition from private insurance to Medigap to Medigap with Medicare and then eventually -- at least, if you are institutionalized, then the total conversion to public financed health care. And it doesn't show the kind of provider breakdowns that occur in the whole continuous process of care or the payer fragmentation that results from having all these different sources of financing.
In spite of this medieval concept of long term care, I think that there is some room for optimism as we work with -- as HCFA and the Department work with states to develop new approaches to serving dually entitled beneficiaries.
Basically, this is what I like to use as a way to describe the relationship between Medicare and Medicaid in serving dually entitled beneficiaries. I am getting a little heavy on the Asian symbolism, I realize, but it sort of works for me. If you think of Medicare as having -- the Medicare and Medicaid as complementary and mutually symbiotic, I guess, might be one word, programs that serve in a totality of the population that are entitled for both and in one program, Medicare, let's say, starting with Medicare, Medicare has some services that might be considered long term care kinds of post-acute kinds of services that one might actually see more often in the other program, the Medicaid program -- that would be the little circle inside the big half.
And then in the Medicaid program, you would see generally the long term care kinds of services or the support types of services, the non-medical kinds of services with the inside of that being prescription drugs, co-payment for Medicare, the medical acute services, things like that. So, within each program is a little bit of the other program and if you look at it in terms of where we are in the dynamics between states and Federal Government, I see that there is a sort of a large -- a question of who owns this population. I think states will come to us and say, gee, this is really our population and we are going to serve them.
The Federal Government may have the same perspective in the opposite view. But, actually, the population of dual eligible beneficiaries was about six million in 1995 nationally and they represented about 16 to 17 percent of each program's total enrollment, but represented about 30 to 35 percent of the total cost of each program, according to work that was done by our division using the Medicare CBS survey.
By the way, my apologies to Bruce Lee. I picked this thing off his Web page and there is an interesting little paragraph about martial art and what I would like to do is substitute the words "health policy analyst" for "martial artist" and you basically have got it.
What I would like to do -- by the way, I don't really know how much time I have to --
DR. IEZZONI: A few more minutes.
DR. CLARK: Okay. I guess I would like to list some of the major policy issues that are under discussion. The last one is not a policy issue or maybe it is. And maybe just try to give you a little sense of where some of the different models fall on this chart.
The first issue really is the issue of continuity of care across the systems of health care. For example, the ONLOC pace model, which I have briefly described is only available for people who are dually entitled or Medicaid only. If you are Medicare only, you could buy into the plan, but it would cost you $1,400 a month or so.
So, it basically involves people at a certain point in their illness of making a conscious decision to go from one kind of provider to an ONLOC or a pace provider. So, there is a break.
Now, the Social HMO, which in theory would involve Medicare and Medicaid together, but, in fact, does not, would be an example of a continuous model in which you could go from fee-for-service as a Medicare-only beneficiary, enroll in a SHMO and then as you needed to have care from both programs, you could receive that from both, but, in fact, none of the current SHMOs, I believe, have a contract with Medicaid.
Many of them, dating back to 1985, never had. The Minnesota Senior Health Options is a model that is only for dually entitled beneficiaries. However, their major contractor right now -- they have, I think, an enrollment now of about 460. Their major contractor, which is expected to come on line in the next month, has a Medicare risk contract as well. So, presumably then you could switch plans from your Medicare risk contractor to your dual eligible plan at some point.
And that the model service, not only just dual eligible, but I believe it also serves Medicaid only beneficiaries. The concept developed by the New England states, Integrated Service Networks, also involves right now, I believe, for dually entitled beneficiaries, may be reaching up to a higher level of eligibility in terms of income for some -- for people who may be at risk of institutionalization.
But for the most part, from what I have seen so far -- and this is very much in development -- the target population is exclusively the dual eligible population. I think that is a major issue to consider because for those -- for long range program savings for Medicare and Medicaid, how much money can you really save if everybody is at an institutional level of care to begin with? Or if someone is low income to begin with and the state is always going to be held to their cost-sharing requirements.
It seems to me that states would do better to work with HCFA in targeting a population that is more generally at risk of spending down, at risk of institutionalization and then working accordingly. That is where I think the long range savings could be for our programs if these things were done correctly.
The second issue -- I don't have a watch, so I don't really know, but beneficiary choice is a major issue. ONLOC is strictly a voluntary model. Other models may have Medicaid as a mandatory feature of enrollment and Medicare is a voluntary feature, making systems very difficult to administer and making it very confusing for beneficiaries.
The third issue, administrative oversight, this is where we get into who owns this population. Should the states administer these programs or should the Federal Government administer these or should we do it together and then if we do it together, how?
Finally, the financing, most of the models that we have approved to date -- all the models we have approved to date are based on some variation of the AAPCC as a method of payment. However, we are hoping that the newer risk- adjusted methodologies, such as the diagnostic cost group, hierarchical coexisting conditions, methodology or maybe the disability payment system may have some value as future risk-adjusted models that could be applied.
Finally, I get -- this is something -- I don't really know. Your committee is dealing with the HIPAA(?) data requirements and I think that we need to really think when those become implemented how that will impact on the design of these systems because presumably if there is some sort of standardized encounter data reporting, then we should be planning for that now when we design our waivers and when we make approvals to these waivers.
Maybe somebody will repeal these provisions of HIPAA before that happens. I don't really know anything about it, but I guess we need to start thinking in terms of coordinating those requirements in the future.
I just want to talk a little bit more about the kinds of data that we are -- data activities that we are involved with with some of the states. We have merged Medicare and Medicaid claims for about 12 states right now. Each one is at a state level of the data construction and, so, we are working towards assessing the strengths and weaknesses of these individual data sets and to what extent that they could be made -- they could be merged to be more uniform for purposes of analysis, so that people like Shruiti could go to town on it.
In addition to that, the claims level data, there are additional data systems that would be really interesting to get into this, including the MDS system, the Oasis Home Health System and some of the home and community-based waiver data that is out there. Furthermore, there is all sorts of state and local level data that would include function status information and other things that should be also considered in terms of how can you merge these databases.
I am wondering actually in the context of this discussion today whether we need to be thinking more broadly in terms of bringing in mortality data, other sorts of public health data systems that states maintain that we haven't really thought about at all.
Finally, we need to keep ourselves thinking about those studies which we have done in the past, like the Framingham Study in Massachusetts, the EPI Study in East Boston and New Haven and surveys like the HIS and the Special Disability Supplement and the National Long Term Care Survey and all these different things. When we think about implementing these kinds of projects, how can those systems be used creatively in the context of these larger merged data files?
Just in closing, I guess it is a little frightening to hear the experience of our AFDC 1115 waivers and that our encounter data is not uniformly reported or that we don't require uniformity and it is not even -- and then it is not uniformly reported and then to know that we don't really know the impacts of these programs three or four years after we have implemented them.
I think with the dual eligible population, the stakes are sufficiently high with the vulnerable populations that were being served here, that we need to design these programs correctly from the get-go, make the requirements that we want and try to make them uniform across the applying states and then enforce those standards that we develop.
Finally, a handout I circulated lists a grant solicitation that is out on the street to states, which lists a number of priority areas, which I hope you will take the time to look at. And at the back of the solicitation is a chart book that was developed by our office on dual eligibility. So, I hope you will take the time to look at that as well.
Thanks.
DR. IEZZONI: Thank you, Bill.
Brief questions for clarification for Bill?
We will move on to Shruiti. Okay.
DR. MOR: What are the 12 states?
DR. CLARK: Well, in various years and --
DR. MOR: For public use now.
DR. CLARK: Nothing is public use right now. Actually, the caveat to all this is privacy and how we deal with many of these issues in terms of trying to get this stuff utilized. As some of you may have worked with HCFA's data system before, it gets very complicated very fast with transferring data from one party to another, but right now, these are not even close to being publicly available.
We are only talking right now about whether we can actually use this data at all in a merged context. So, if it turns out that even at the state level that it is worthwhile, I mean, Rhode Island is an example of a state that has not yet submitted its updated requests for some of it, but it has leaked data from 1992 to 1994.
This is six New England states: Colorado, Wisconsin -- then we have some additional states from another project that Medicare -- the Medicaid Drug Utilization Review Demonstration, which includes Iowa, Maryland, Georgia and Washington State.
DR. IEZZONI: That is great. Let's move on.
Shruiti.
DR. RAJAN: The dually eligible population, as most of you know, has been receiving a lot of attention lately from both federal and state policy makers. This really isn't surprising because the duals are a sizeable, very vulnerable population. As Bill mentioned, there are about six million dual enrollees and that is institutionalized and non-institutionalized.
In Table 1, I have put together sort of a brief profile of the duals and, as you can see, in comparison to other Medicare beneficiaries, the duals are disproportionately for non-white and female. I think it is also important to note that the duals are disproportionately made up of individuals who are under age 65 with disabilities. They tend to have, you know, stronger health care needs.
From a positive perspective, the duals are a challenging population because of their health care needs but also because of the lack of coordination between the Medicare and Medicaid programs in serving them. The lack of coordination is problematic. Both from a quality of care standpoint, as well as from a cost standpoint, there is going to be a lot of cost shifting between the two programs and interactions between the two programs are important to consider when state and federal policy makers are trying to limit spending in both programs.
So, the paper I am going to present today is a result of work that Genevieve Kennedy and I have been doing at The Urban Institute under a grant from HCFA, on which Carolyn Rimes is the project officer and Corben Moon(?) is the principal investigator.
The focus of our research has been on home health for the duals and more specifically on the interactions between the Medicare and Medicaid programs in providing home care to this population. It is one of the few service areas where both programs overlap. We have approached this project basically in two phases. The first phase was to look at spending patterns in Medicaid and Medicare over time and across states and we supplemented that analysis with case studies in five states trying to understand why we are seeing these spending patterns.
The second phase, we have explored the issue further through a multivariate analysis using the Medicare current beneficiary survey. Today I am going to focus on findings from the first stage of the project and I would like to conclude by looking at some of the data needs.
Now, we were motivated to research this topic by many of the reasons I just mentioned. The duals are a very vulnerable, diverse and sizeable population and they are also disproportionate users of the Medicare home health benefit. There has also been very little recent research done that has considered both programs together. And sort of the last factor that spurred our interest in the topic was the growing interest in all the innovative programs that Bill just mentioned, the MSHO project in Minnesota and the New England states recent interest.
What kind of relationship did we expect to find when we first started this project. We expected there to be a positive relationship between Medicare and Medicaid spending on home care across the states. Our thinking was that states that had more restricted nursing home policies and more generous home and community-based waiver programs, not just waiver programs, just home and community-based care programs in general would have left proportionately more individuals in the community who could access both Medicare and Medicaid uses.
In addition, since Medicaid is a payer of last resort and because states have a strong incentive not to pay for services that would otherwise be covered by Medicare, we felt that there really wouldn't be that much substitution between the two.
Finally, both programs have very different histories and objectives. So, we thought there would be minimal tradeoffs between the two programs.
Before discussing the spending growth patterns that we saw in these programs, I guess I would just like to say a few words about the structure of the Medicaid and Medicare health care benefits. As many of you may already know, the Medicare home health benefit is a medically- oriented, post-acute care benefit and in contrast the Medicaid home care program tends to be more of a chronic care benefit and it is made up of three different components, the home health benefit, the personal care program and home and community-based waiver programs.
The home health benefit is mandatory and it most closely resembles the services that are provided under Medicare. That is home health aides, skilled nursing and therapy services. The personal care services are optional. About 30 states offer those now and they are typically designed to help individuals with activities of daily living, such as eating, dressing, bathing.
And the third component, home and community-based waiver programs, are meant to substitute for more costly institutional forms of care for individuals who are at high risk of going into nursing homes or other institutions.
In Table 2, we have overall Medicaid expenditures and expenditures for each of the three components under Medicaid, as well as expenditures for Medicare home health between 1987 and 1993. Between 1988 and 1993, Medicare spending increased fivefold. That is an average annual growth rate of about 38 percent.
And Medicaid home care outlays tripled over that same period. So, at least from an aggregate spending standpoint, it doesn't appear that Medicare spending was offset by lower Medicaid spending levels. In other words, both programs are seeing high spending growth on these services at the same time.
In Table 3, we put together aggregate and per enrollee spending on home care services in Medicare and Medicaid for 1993. I would just like to point out two observations here; first, a concentration of Medicare home care spending is in New York. Almost 37 percent of all Medicaid home care spending was in New York in 1993.
In fact, if you look, New York's Medicaid spending levels are almost four times as high as its Medicare spending on home care. The second point is that we see some real outlier states in terms of Medicare home health outlays. Tennessee, Mississippi and Louisiana stand out as having overall Medicaid home care expenditures that are substantially lower than their Medicare.
So, we used these current enrollee spending numbers from Table 3 to classify states based on their spending relative to each program's national average and the results can be seen in Table 4. You can see from this table that a majority of states, 30 in all, conform to a pattern, which suggests that there is a tradeoff between the Medicare and Medicaid programs. That is, you will see that many states have high Medicare and low Medicaid spending or vice-versa.
It is also interesting to note the geographic patterns that show up in this table. For example, all six of the New England states, which have had a strong tradition of home care through visiting nurse associations, are in the high Medicare, high Medicaid category, while many of the states in the Southeastern part of the country wind up having -- wind up in the high Medicare, low Medicaid category.
So, to get a better understanding of the spending patterns that we were seeing, we collected five states for closer study through telephone interviews and the five states we selected were Connecticut, New York, Minnesota, Louisiana and New Mexico. The states were selected based on the four different categories. We wanted to select one from each category. But we also wanted to get geographic variation and we felt that we had to include New York, since its Medicaid home care expenditures are so large and the program is unique.
So, we gathered information through telephone interviews with three to five individuals in each state and generally we spoke with Medicaid staff and other state officials involved with home care, as well as with home care provider association representatives.
In terms of the topics we covered, we wanted to learn more about state policies and practices, as well as provider behaviors that might be affecting home care use. So, for example, we asked states about the presence of Medicare maximization or third party liability programs. Those are programs in which states are trying to recoup as much Medicare and private funding for home care as possible and limit inappropriate billing to Medicaid.
We were also interested in how other state practices might be affecting home care. So, we asked about the capability of state MMISs to track duals and to identify the appropriate pair.
And the other area that emerged as an important factor was provider practices, particularly a provider's knowledge of Medicare and Medicaid regulations and their relations with the Medicare fiscal intermediaries. So, the three major findings I would like to point out from our case studies are, first, all three states with large Medicaid home care outlays -- that is, Connecticut, New York and Minnesota -- have initiated Medicare maximization programs and these programs have a number of different components. A typical one is provider education.
States are trying to educate providers about Medicare and Medicaid billing and eligibility regulations, but it appears that the key to the effectiveness of these programs was the state's ability to identify dual enrollee claims and route the claims to the appropriate payer. Usually, that is done through the MMIS. In fact, the two states with low Medicaid spending that we studied, Louisiana and New Mexico, both had MMISs that enforced the requirement that providers bill Medicare first on behalf of dual enrollees.
The second finding is that the two high Medicaid, low Medicare spending states -- that is Minnesota and New York -- have personal care programs that often relied on providers who weren't necessarily certified to provide Medicare services, so that these providers had no incentive to refer dually enrolled clients to Medicare even when appropriate because they couldn't reimburse.
The final point that was actually surprising to me was that Medicaid-financed home care was sometimes preferred by home health agencies because its eligibility criteria could be interpreted more broadly. Reimbursement seems more certain under Medicaid in a lot of cases because there are strict Medicare FIs. And in some cases, reimbursement rates are actually higher under Medicaid than under Medicare.
I guess I would like to step back a little bit from our research to conclude and talk a little bit about some of the data gaps that exist for the dually enrolled populations, these 12 states that Bill mentioned were actually new to me because I hadn't heard about that.
I think we really could benefit from uniform individual level Medicaid expenditure and utilization information for the dual population. While MMIS systems might contain this information, they are usually not uniform and they are very difficult to work with. I guess Nirvana would be merging Medicare and Medicaid claims for this population so that you could really look at the continuum of care. You could look at acute through long term care and I know that has been discussed and it is being done. I think Maine has done that on its own, right?
But it is really not done and it is a large data gap. I think it would be a very valuable tool for states, as well as for researchers.
The second data gap really concerns policy information, more detailed information for all 50 states on program dimensions that could be affecting interactions between these programs would be very useful. For example, we might want information on the existence of the Medicare maximization programs across all 50 states or the ability of state MMISs to track duals and how states are using that to route dual claims.
DR. IEZZONI: Okay. I see the pre-lunch kind of people are feeling a little bit tired, but those were interesting presentations. So, let's see if there are some questions.
Can I just start out, though? You know, what we are beginning on for this particular year is a focus on Medicaid managed care. I just wonder from your point of view -- Rachel spoke about it briefly this morning, but from your point of view, where are the dual eligibles in this broader issue of Medicaid managed care that we are going to be focusing on this year?
DR. RAJAN: I know probably most about the MSHO demonstration and I think, you know, they -- Minnesota had a very difficult time trying to figure out what do you do with the institutional long term care piece. That is only -- I think that the plans are at risk for the first 60 days of institutional care and they are not -- it goes back to fee-for-service after that for the duals who are in this integrated managed care.
[Multiple discussions.]
DR. IEZZONI: -- two programs that Bill referred to?
DR. CLARK: I am sorry. I think it is for people who are actually institutionalized after a certain number of days that the fee for -- it is a pass-through of fee-for-service.
DR. IEZZONI: Okay. So, people who are in Medicaid managed care and then get institutionalized for --
DR. CLARK: They are actually still enrolled -- they would still be enrolled in the plan presumably, but their payment would change.
DR. RAJAN: Right. And then they go back to having fee-for-service.
DR. CLARK: Right.
DR. RAJAN: I guess the point I was trying to make is that Medicaid managed care for this population, I think, is very complicated because you are getting into an area that states and no one really has a lot of experience with. You are getting into capitating long term care and I think plans are very reluctant. I am not quite sure what the agenda would be in terms of what you want to look into.
DR. CLARK: Just to follow up on that, I think the relationship may be that if the states recognized that the AFDC population -- I think it was a strategic approach that states took. They realized that -- because if you look at the cost structure, I mean, the old -- the 80/20 split, where the AFDC is higher enrollment in terms of total populations, but lower costs overall per capita.
So, that was maybe the easier challenge for states to embark upon in terms of bringing people into managed care. They also greater control because it was only Medicaid to worry about. But if you look at the duals, it is much higher cost per capita plus it involves -- it is an order of complexity, which is greater than Medicaid only because you have got Medicare.
But I think that the relationship is that the AFDC waivers really were sort of the first wave of Medicaid managed care and now that the duals represent sort of the second wave and then having sort of gone through a dry run, if you will, and learned how to report encounter data and to implement health plans across states and things like that, that kind of experience now, they are bringing to bear in serving this other more difficult complex population.
But I think New England is actually -- the Massachusetts waiver request right now, which is under review is, I think, the first one that really includes all institutional care under a capitated arrangement. It is certainly the first one statewide and I think other than ONLOC, which does include all Medicare or Medicaid services, including institutional care -- this is, I think, probably the big one in terms of that institutional component.
I think there are going to be a lot of questions about the capacity of providers to absorb that risk in serving that population.
DR. RAJAN: And I guess I would just like to say duals, I think, in Minnesota -- other people may know more about this than I do, but I think the duals have been in managed care for the Medicaid wrap around for a number of years in Minnesota for the prescription drugs and the other pieces that Medicaid fills in for Medicare for this population.
DR. CLARK: But then Minnesota is pretty unique, too. I mean, because that was through a previous demonstration waiver that started in 1980 or 1982. Are you talking about the P-MEL(?)?
DR. RAJAN: Yes.
DR. MOR: What is the relationship between the EverCare Program, which is apparently just a Medicare thing, although it could be a Medicare and Medicaid, but it is not, and the dual -- because all of those people largely are dually eligible and they are living in nursing homes. That is happening in multiple states. What has been the rationale for a non-dual-eligible formatting under that circumstance?
DR. CLARK: I am not sure if there is a rationale. I mean it was --
DR. MOR: It just happened that way?
DR. CLARK: Yes. Somebody came in with applications. Hey, let's try managed care -- Medicare managed care for nursing home residents. Okay. Let's try it.
DR. MOR: And everything Medicaid stays the same.
DR. CLARK: Yes. I think probably the original applicant thought, well, why would we want to mess around with however many state agencies and worry about getting the Medicaid piece of this when what we really want to do is to try to work managed care in a more limited context. But I think that there are probably pretty -- a number of pretty severe limitations to what has actually been tested in terms of the conceptual model, in terms of EverCare.
DR. HARDING: Your statement earlier on where you said 16 percent are spending 36 percent or something along that line. I take it that is in the area of nursing homes and community care homes. What is the disproportionate share?
DR. CLARK: It is actually -- it is right here in this slide, but it is of total Medicare expenditures, 16 or 17 percent of the population is costing about 30, 35 percent of the total. It is right on the first --
DR. HARDING: The double is the dually eligible?
DR. CLARK: Right, the dually eligibles. Sixteen percent of the Medicare -- let's see, where is it?
DR. RAJAN: Sixteen percent of the Medicare beneficiaries got 30 percent of Medicare program spending in 1995.
DR. HARDING: What are they? What are they expending all that money? What is their problem?
DR. CLARK: They are sick and they are poor for one thing. So, they were being hospitalized a lot. They have high physician costs. They have high home care.
DR. HARDING: So, it is all of the above, not
just --
MS. RIMES: It is A and B, Parts A and B.
DR. CLARK: It is total Medicare, but Medicaid has the same experience. I mean, it is 16 or whatever, 17 percent of Medicaid and was it 35 percent of total Medicaid expenditures. So, we are talking about a very sick, old and frail, people with, you know, severe disabilities and, you know, they have high costs. So, there shouldn't be any real surprise that, you know, these people are going to have costs, given their health status and disease experience, I guess.
DR. HARDING: You said that there is another layer right above that group that is at high risk that isn't expensive yet. Can you just say a word more about that?
DR. CLARK: These are the notorious QMBI(?), SLIMBIs, LBBYS(?), whatever -- the BWI -- BWDI -- qualified working disabled individuals, that is the QWDI, which I don't really understand the eligibility constraints, but it is a little different than Medicaid dual eligibility status. Then there is the qualified Medicare beneficiary, which is a hundred percent of the federal poverty level, where the state must buy in for Medicare cost sharing. And then there is the specified low income Medicare beneficiary -- that is the SLIMBI and that is actually very -- that is really key in terms of the current policy debate or the current legislation on the Hill because that is where remember the Congress is talking about having the Federal Government or the states pay more for the SLIMBY cost sharing. These are people up to 300 percent of the federal poverty level, where the state buys in for the Medicare co-pays and deductibles as I understand it. Am I right?
DR. RAJAN: 120 percent.
DR. CLARK: 120. Oh.
But these are sort of eligibility groups above the basic dual eligibility level, which really are not really being targeted by most of the states because they are not really on their plate right now. On the other hand, as I was saying, it seemed to me that these are the people who for one reason or another are probably -- might be worth thinking about in terms of folding in to these approaches.
DR. IEZZONI: Any other comments from the committee, questions before we break?
DR. MOR: The comments you were making about the HIPAA and the -- did I gather from your comments that this issue is not actually integrated or taken into consideration in your review of the existing plans or the waiver requests for dual eligibles or anyone at this juncture?
DR. CLARK: I think it has to be. We haven't gotten that far along with the reviews to assure that it will be. I think that depending on what certain -- there are certain implementation guidelines; 22198 for the transaction data sets, unique identifiers and security standards, that certainly falls within the window of the implementation plans of the New England states. Nobody plans to implement before that.
So, one would think that these standards should be applied to these waivers at that point in time that they are determined. Then the other one is adopting standards for claim -- I mean, it seems to me that the best way to evaluate these programs and projects would be to assure that if the requirement is anything that is electronically transmitted, it has to be uniform.
I think that is what the HIPAA requires, isn't it, that since almost all these plans will be electronically reporting things, that we should try to build on that under whatever the requirements are that HIPAA is coming up to it with.
Does that make sense? I am not an expert in this at all, but there are a lot of people in HCFA who are working like dogs on it right now.
DR. IEZZONI: I understand there is a question behind me. Could you introduce yourself again?
MS. SMITH: I am Elise Smith from the American Health Bureau Association.
Bill, I just have one question on your comment about what these demonstrations might -- the population that they might try focusing on. You were talking in terms of QMBIs and SLIMBIs, but correct me if I am wrong. Isn't the New England demonstration, at least within the context of their stated framework, aiming at a soon to be at risk or a population that is not right at this moment at risk of institutionalization. Wouldn't that be an example?
DR. CLARK: I think it is a variation across the states, under approach -- well, I think, Massachusetts has that as part of their intended goal, but I am not sure about some of the others and some of the others, I just don't know about what, for example, Rhode Island's thoughts are about this.
DR. MOR: Rhode Island hasn't submitted it yet.
DR. CLARK: No, no. But then Maine, I think, does not -- is not reaching out particularly and Massachusetts is not -- I am not sure how well defined that might be.
DR. IEZZONI: Okay. Thank you, all the speakers. This has been a very informative morning.
What I would like to do now is have all of us break and go, I guess, upstairs is our only option, and buy lunch.
What we will do kind of while we are eating lunch is go over the draft of the charge. Okay? So, this will, hopefully, be low intellectual energy. I think, Gracie, that you have copies of the draft of the charge for the committee.
I would like to see if there is any way we could approve the charge and the work plan as outlined in this document, so we can get that off of our table for what the committee has to do and be able to report to Dr. Detmer that we are done with that. Okay?
And then we will start our discussion around 1 o'clock or so about -- we will come back here to eat.
[Whereupon, at 12:25 p.m., the meeting was recessed, to reconvene at 12:52 p.m., the same afternoon, Monday, July 21, 1997.]
DR. IEZZONI: What I want to do is any final, like, edits on it and then if we can vote.
MS. ARAKI: Where do you want to put that one? Here.
DR. IEZZONI: Maybe up there. And Lynnette, would you mind being the recorder?
MS. GREENBERG: I didn't mean to -- and maybe you didn't take it that way -- but to suggest that you couldn't look at surveys being done, you know, even outside of the apartment --
DR. IEZZONI: I had actually talked to Carolyn about that.
MS. GREENBERG: Okay.
DR. IEZZONI: Does anybody have any suggestions on this version of the charge work plan? Okay. Lynnette, George has a suggestion.
MR. VAN AMBURG: On No. 5, I don't think the subcommittee is really going to recommend any sampling methodology procedures. I would take that and just eliminate that part of the sentence and say the subcommittee may make recommendations for collecting surveys for improving the quality and quantity of data, just cut out that middle there because I don't think we are going to provide that type of technical recommendation.
DR. IEZZONI: Okay. That was actually a recommendation of one of the commenters, that I add that in.
MS. GREENBERG: Well, it had been in an earlier version and perhaps it is a question of linguistics. I don't think, obviously, the subcommittee is going to develop a sampling plan. We certainly are attempting to get a few more people on the committee, who really have survey --
DR. IEZZONI: How about sampling approaches rather than methods because that is vaguer and it is more accurate as to what we are --
MR. VAN AMBURG: I would be happier with that.
PARTICIPANT: Could I make a comment at this point since you are on Item 5? I was looking at the document in terms of the ability to capture -- we are really not looking at sampling per se, but how we can get detailed data for populations living in concentrated areas.
So, it is not in this document but I can see -- I think what the subcommittee would be looking at is encouragement of the current methodology as part of that sampling. I think it is a broader issue than that.
DR. IEZZONI: I guess it wasn't part of discussion either, I guess.
Marjorie, do you have a suggestion on how to deal with this?
MS. GREENBERG: I just thinking that at the end of that sentence we could say the public health initiatives for these populations at the national and community level or something -- at the national and sub-national level. I don't know. Something like that.
DR. IEZZONI: Would that work?
PARTICIPANT: I think to get it in there so -- I don't know how much you can do on this, but it is such a key to thinking about getting this data in the future, that I think you don't want to exclude it and you want to begin to pull it into your discussion.
DR. IEZZONI: Lynnette, I think Marjorie's words were good.
MS. ARAKI: So, it reads, "The subcommittee will make recommendations to federal agencies conducting surveys, e.g., the National Center for Health Statistics, on sampling approaches, data gathering procedures, additional or supplemental studies and other means for improving the quality and quantity of data to inform public health initiatives for these populations at the national and sub-national levels."
DR. IEZZONI: And community levels. At the national and community --
[Multiple discussions.]
Any other suggestions for wording changes?
DR. MOR: I have a question.
DR. IEZZONI: Yes.
DR. MOR: My question is that there is no time frame.
DR. IEZZONI: There never is.
DR. MOR: As long as there never is, that is fine.
MS. GREENBERG: No, no, that is not true. We used to have that work plan.
[Multiple discussions.]
DR. IEZZONI: That is why there are no dates on this and there will be no dates on this. This will be modified.
MS. GREENBERG: If you do have like --
DR. IEZZONI: Medicaid managed care, about a year.
MS. GREENBERG: Generally, we do have milestones.
DR. IEZZONI: But we also -- typically these charges aren't dated, are they? The work plans typically aren't dated either, are they?
MS. GREENBERG: Yes.
[Multiple discussions.]
Because otherwise there is really a version confusion.
DR. IEZZONI: Okay.
DR. MOR: My point really is that there is actually -- there are about three of these or four of these things that are current right now.
DR. IEZZONI: And that is what is good because it means we can tick them off once we finish them. So, we can say we have done --
DR. MOR: We could also finish them.
DR. IEZZONI: Not necessarily, Vince. You haven't been on this committee long enough.
[Laughter.]
PARTICIPANT: It takes awhile to finish --
DR. IEZZONI: Some of these things, you know, the demonstration that started in 1982 and it is still going on.
MS. RIMES: But I wouldn't use that as an example.
DR. IEZZONI: But anyway, don't feel uncomfortable with this. Those of us who are older than you and wiser, having served on the committee are very comfortable with this level of vagueness.
DR. MOR: I can quote you.
DR. IEZZONI: No, hopefully, the tape isn't on. Yes, it is. The last five minutes.
Okay. Other suggestions?
DR. HARDING: Could we have a footnote on No. 2, U.S. territories and islands, defining what that is or listing them?
DR. IEZZONI: That is kind of what I meant by review federal health programs. We need to define what that is absolutely, but maybe not in the charge unless there is a one sentence or -- is there a way to define that to make it clearer?
DR. AMARO: You might want to make sure we are using the right terminology there, you know, so our charge has the right --
DR. IEZZONI: Right.
DR. AMARO: Is it U.S. territories and islands or is it just U.S. territories?
MS. RIMES: You have the wording.
DR. IEZZONI: Yes. I used wording that Lynnette kind of -- I listened to Lynnette. On No. 2, are we using the words correctly? Does "territories and islands" cover everything that we are talking about?
MS. ARAKI: Well, yes. It would cover the Virgin Islands -- but we don't necessarily refer to them as U.S. islands.
[Multiple discussions.]
DR. IEZZONI: So, Lynnette, could you put the appropriate language in here for what we are talking about, including the Puerto Ricos and the Virgin Islands. So, the whole range -- you know, basically the land masses that we feel responsible for and provide federal money for health programs, but are not the 50 states or the District of Columbia.
MS. ARAKI: The District of Columbia is excluded from this?
DR. IEZZONI: Yes, it is, but we would like clarification -- if staff would look into that for us, we would like clarification as to what D.C. really is.
DR. CARTER-POKRAS: Well, D.C. is included in many of the sampling frames for the surveys.
[Multiple discussions.]
DR. IEZZONI: It was just Richard's question as to what is really D.C. It is not an island, although it feels that way sometimes, or a territory or an off-site state. It is more a --
PARTICIPANT: It is a philosophical question.
DR. IEZZONI: Any other word changes? Going once -- shall we enact some business here? Do I have a motion?
DR. MOR: Move to pass it.
PARTICIPANT: Second.
DR. IEZZONI: Everybody in favor of the motion to pass the work plan.
PARTICIPANT: As amended.
DR. IEZZONI: As amended, by Lynnette. Yes?
[There was a chorus of "ayes."]
Okay. Good. All right.
Lynnette, you will amend the work plan according to the editing changes that we just made and you can tell Don Detmer that we have a work plan and a charge from our subcommittee.
MS. ARAKI: So then you report this out in June and the full committee adopts it.
MS. GREENBERG: September.
DR. IEZZONI: September. It is July 21st.
MS. ARAKI: It will be dated today.
DR. IEZZONI: Yes, date it today.
DR. CARTER-POKRAS: I have a clarification question. I am just wondering, the subcommittee is interested in hearing about all major health concerns, not just chronic illness. Right?
DR. IEZZONI: Right.
DR. CARTER-POKRAS: Because the second sentence says concerns about chronic illness -- under the bullets, it says identifying major health concerns and the second sentence says concerns about chronic illness.
DR. IEZZONI: It says public health concerns and then concerns about chronic illness. It is actually language that I worked on with Hortensia to try to be quite broad and inclusive. That is what our goal was.
MS. GREENBERG: So, the public health issues
were --
DR. IEZZONI: Yes, and it says below -- you have got bullets, identify major health concerns affecting these areas, such as public health issues, chronic illnesses, mental health concerns and "such as" always allows for other things.
We actually are going to be talking just the bunch of us for the next about hour and 40 minutes or so. We will take a break before Dr. Sondik comes. We have a lot to do in this time actually.
Let me just sketch out what my thoughts are. About three o'clock -- maybe we should break right before Dr. Sondik, after we have talked about the OMB Directive 15 revisions. So, let me start there first because it is clear.
The OMB Directive 15 revisions, you all got the Federal Register reporting of that last Wednesday or something. It actually came out very recently. So, poor Hortensia and Olivia haven't had a chance to connect with each other to even begin to think about it. So, what we are going to do at 3 o'clock or so, maybe a little bit earlier, so we can have a break before Dr. Sondik comes, is that Hortensia and Olivia would just like to hear from us about any thoughts that we might have based on our reading, if we have had a chance to read --
[Multiple discussions.]
It is a very long document. It is very informative, though. I mean, it is obvious that a lot of work was done to lead up to this document. So, we will talk about that at 3 o'clock.
Then Olivia and Hortensia will have to get back to us with their letter. And just to anticipate, that letter is due September 8th. So, we are going to have to be dealing with it over the next month when a lot of us are going to be unavailable by e-mail.
DR. CARTER-POKRAS: Actually, Hortensia is gone the entire month of August. When is your last day in the office?
DR. AMARO: The first, I think.
DR. CARTER-POKRAS: So, we basically have to get our stuff done before the first.
DR. IEZZONI: All right. So, 3 o'clock, if people can be thinking in the back of their minds, that is what we will do. A little bit before 3:00, we will talk about the OMB Directive 15.
Before that, we need to come up with a very specific work plan for our year long effort to look at Medicaid managed care. Let me tell you why it needs to be specific.
We have the potential of having a contractor do some work for us. We might even have the potential of having a contractor, such as Mathematica or one of the other organizations, that has been very involved thus far with looking at some of the programs that are ongoing with Medicaid managed care. They could potentially be a contractor, so long as they have a work order, I guess, agreement with NCHS or --
PARTICIPANT: They are on the ASPI task force.
DR. IEZZONI: Are they on the ASPI task force? Okay.
So, if we want to ask one of these organizations to do some work for us, we need to be quite explicit about what that work is, so that Marjorie and Lynnette and Caroline can begin to work to get, I guess -- is the technical term a task order in place?
MS. GREENBERG: Yes. Developing a scope of work for the task force.
DR. IEZZONI: Developing a scope of work. Okay.
So, I think what I would like to do at the end of our little discussion is to really focus on what we might want a contractor to do and there might be two or three different things that we would like them to do and we might like them to do one of the things now and then wait for awhile and after we see what that shows and come back and come up with another contract later on. We can kind of couch it any way that we want, but we need to be clear about what we want.
The second thing is we need to decide among ourselves how much time we are willing to commit to this and what we really expect for us to be able to have accomplished by the end of the year. Okay?
So, what I would like to do, though, is really start off our discussion by being quite broad. This is kind of going back to something that I heard very clearly Don Detmer say at the June meeting, but maybe the rest of you didn't hear it because you weren't oriented the way that I am, but Don said at some point I would like to know what that camera is really for. Okay? So, that is why we handed out this camera thing.
It came around with the subcommittee charge. The two of them were together when Gracie handed them out.
So, let me just talk through the camera a little bit and then I would like to shut up and listen to the rest of you talk.
Do people have that? Everybody has got it.
Let me tell you where the camera came from. And poor George has heard this about 13 different times, so he is going to sit there and be polite and just listen again.
Back before you new members came on board, we old and cranky members were trying to figure out how we were going to deal with the fact that we had this techie invasion, this potential for the committee to basically become a very technically-driven committee. We were concerned about that because we knew that lurking around the bush was this whole emphasis on standards and ANSI --
MS. GREENBERG: This was before the legislation.
DR. IEZZONI: This was before the legislation passed but we were having -- at the full committee meetings we were having all these people come that would talk in acronyms the whole time and some of us were really thinking what are we here for. Okay?
So, Kathy Colton(?) and I, since we are both in Boston and can get together easily, volunteered together to sit down and think about the answer to this question, what are we really here for. And Kathy, who tends to think metaphorically, came up with this camera analogy and that is that what the committee is really here to do is to think about what questions we need to look at concerning the health and health care of the American people.
Once you kind of look at that broad level, then you begin to focus increasingly in on how you answer those questions. Kathy and I put data transmissions and standards at the very bottom of the camera, which is not bottom -- you can hold it this way. Okay? It is not the bottom technically. It is the lens, as Kathy would say. You know, that is the lens.
But to get to that lens, you need to begin to think, okay, here are the questions, but who are the people that we are concerned about when we are asking these questions. What are the events that we are concerned about when we say we want to identify these areas of health and health care? What is the information that we then need to begin to look at? What are the data elements that are required to produce this information? And then it gets increasingly kind of technical.
We separated the camera into the upper part, which is information policy and then the bottom part, which is standards. So, what I would really like to do today during the first part of our discussion, because I think it would really help us figure out what we want, is ask the question: What do we want to know about Medicaid managed care? Okay? Because we can only begin to think about data systems to evaluate Medicaid managed care if we first ask the question: What do we want to know about Medicaid managed care?
So, that is why we have a flip charts here is because what I would like to do is just kind of go around the room and get people's questions. What do you want to know about Medicaid managed care? And then -- because there were a lot of things this morning that came up and some of them, I think, are going to be of more interest to us and others and there might be things that didn't come up this morning that are of interest.
Yes, Marjorie.
MS. GREENBERG: I just want to -- it may or may not help, but for those who are new to the committee, also understand that part of the motivation was also -- there was this possible situation where we were going to have two committees or there were people thinking in terms of two committees, one to do all the data standards stuff and one to do this more of the survey, et cetera.
There was a real sense that that would be a mistake not to have the data standards and the data sets, et cetera, informed by this broader picture would not be a good thing. So, I think that if to some degree if there is some kind of disconnect sometimes between like the types of issues you are talking about today and some of the standards stuff that goes on in the committee, I think, it is -- in the full committee, it is important to remember that at least there was a buy-in to the linkage by having one committee.
DR. IEZZONI: Okay. But for the purpose of today's discussion, I think we are really thinking in terms of the more global perspective and we may never for this particular exercise get down to the level of standards.
MS. GREENBERG: Well, on the other hand, if what is available for Medicaid managed care ends up, you know, basically being the HIPAA transaction because that is claim or equivalent encounter data, then I think it is very important that there is a linkage there.
DR. IEZZONI: Well, but that is why we need to ask these questions.
MS. GREENBERG: Right, but not this minute, but --
DR. IEZZONI: Because these questions may not be answered by the ANSI 837 form or whatever, you know, whatever these things are. And we will get down probably to that level at some point or we could ask a contractor to get down to that, you know, to look at those kind of issues for us.
Okay. So, George, I know you were one of the people that was really interested in having Medicaid managed care be our topic for in-depth discussion this year. Can you just tell us a little bit about why you felt that and what you wanted to know about it?
MR. VAN AMBURG: Well, I was particularly interested in knowing whether the health care patterns that the managed care people were getting were better, equivalent or worse than the health care patterns in the fee-for-service, particularly access to health care. And as I talked this morning a little bit about the carve out population services, I think that is going to be a real problem is to be able to monitor whether these people in the managed care are getting the appropriate services or not.
MS. WARD: By health care patterns, do you mean behavior of the providers, the results of the care?
MR. VAN AMBURG: No. I am talking about where they are getting access to various types of services and care that they need. I am also concerned about what we didn't talk about this morning, was the provision of dependent services under the managed care.
I mean, it was mentioned a little bit this morning about family planning services, but we have got all kinds of prevention services in public health and what I have seen so far, at least, in my limited work with the Medicaid was that the whole public health arena kind of just disappeared during this managed care thing with Medicaid.
DR. IEZZONI: Okay. So, Lynnette, we should also put carve out up there because the carve outs was one of the real issues, I think, this morning and George just mentioned it.
Do we have any tape, Gracie? Can you steal some tape from somebody so we can --
[Multiple discussions.]
Okay. Hortensia, what are your questions?
DR. AMARO: Well, I thought that -- I mean, these are big questions -- so, I thought really you would be interested in knowing how it impacts access, which you mentioned, but also quality and cost and you would probably want to know something about -- quality and cost and then you would also want to know something about health status of populations and, you know, prevention, I think, is an additional -- so, I had those five points. Access, quality, cost, health status and -- I guess access to prevention -- I am not sure where to fit that in. Maybe it is sort of under access, but it is a broad -- it is not just medical access.
DR. CARTER-POKRAS: We only counted four. Access, quality, cost, health status --
DR. AMARO: Well, if you put prevention under access, then that would --
MS. ARAKI: Would it be like this, Hortensia? Provision of preventive services, does that cover your --
DR. AMARO: Access to quality --
MS. ARAKI: Quality and cost, health status, access here, provision of prevention services.
DR. CARTER-POKRAS: I heard health status or health outcomes.
DR. AMARO: I would put -- I mean, I don't know if it matters, but I -- on her list there at this point, but I do see quality and cost as separate.
DR. IEZZONI: Elizabeth, you were also somebody who was really interested in having this be the topic for this year's focus. Do you have any additional questions?
MS. WARD: I think that those cover the traditional access, quality --
[Multiple discussions.]
But I do think we also have to look at what the impact is on providers and by "providers," I mean both health plan and direct patient care services because I -- and I think, I have to think out loud or use some other, you know, sort of comment here about what it is -- that is too broad. We need to take it down, but I think we are -- by the reporting requirements, we are also continuing to squeeze providers so that providers are becoming -- there is evidence that providers are becoming less and less satisfied with their work, more and more pressured to do things that they used to be able to add on without worrying about the costs to the kind of care they provided because they feel they are getting so squeezed, they are not willing to do the kind of things -- and care environment is becoming increasingly hostile because of the unhappiness of the people who are being squeezed.
That is not true uniformly, not every provider feels that way, but there certainly is increasing -- my contact with providers continually to give the anecdotal evidence that they are being -- they feel punished -- and it is not Medicaid managed care specifically, but that is part of the population that is going under managed care and it is the managed care -- and they are uneasy about adding the Medicaid clients to that increasingly difficult environment.
DR. HARDING: Just to add to that, there is a feeling of changing of expectations that the people who are enrolled are marketed to be enrolled and they are marketed with very high expectations. And when that isn't provided, they are mad.
DR. IEZZONI: So, were their expectations on that based on the lure to get into the plan?
DR. HARDING: Yes, the marketing of the plan to, you know, come to us and we will take care of everything really and it will be wonderful and then it is not and then they are mad, but I don't know exactly how to --
DR. AMARO: Well, that is really kind of alluding to the patient/provider relationship and the impact of this whole system on that relationship.
DR. MOR: I think about this always -- I am the camera but from the micro data element up and then what information can be generated at each level of abrogation. So, I think that -- I also think what are the benefits and what are the costs in the broadest possible sense of managed care for this particular population. So, in thinking about those, some of the benefits to start with are the possibility of integration because while we all are worried about managed care, there is one we do know about fee-for- services is that you will bounce from provider to provider to provider and there was never any incentive to be -- having an integration of care.
To study integration, you must be able to construct histories. To construct histories, you must have micro level data.
DR. IEZZONI: Can we not talk about the data yet?
DR. MOR: Okay. The issue then is integration and continuity of the care process. At another level, you can also begin thinking about substitution of whether or not the way in which care is being used is different in one setting or under one structure versus another. So, does one substitute certain classes of care for other classes of care, preventive versus curative or non-curative or institutional versus home, those kinds of things you can begin to allocate because you are able to allocate across.
I also think that that potentially results in a question that I think is very, very interesting, which is what drives, I believe, a lot of behavior is the market and the market is based on what certain economic sectors operate in and the extent to which managed care results in a different aggregate allocation of funds from one sector of the health care system to another sector of the health care system as a function of different usage patterns.
You can do that under this kind of scenario by looking at the data coming up. It is this issue of transfer of funds, you know. In my world, it is the -- you know, you transfer money out of the nursing home world and put it into the home care world. It happens as a gradual process and is there a differential approach that goes on.
On the other hand, you have a whole series of costs and concerns, which actually work at the administrative level on how things work out, which is part of this, for instance, these carve out functions. Another is the changes in the delivery of public health services, but other parts of this are related to administrative operations.
How do these things function under capitated, non-capitated basis and how are administrative costs allocated? I think a lot of the real concern is that right now the providers are feeling squeezed because they are maintaining multiple systems simultaneously and so that they are increasingly being asked to be responsive to a capitated or managed care environment when it still could be the bulk of their patients are in a fee-for-service world.
So, they are actually trying to do double duty, double work. They haven't yet shifted the way in which they behave. That has a major impact on them, given the amount of overhead, administrative overhead it takes for operation. Now, how to, you know, get at that issue of the allocation of administrative overhead -- some of the big complaints about managed care is that the companies are taking all the profit and they are extracting it -- they take the efficiencies that they are getting out of the system and putting it into the shareholders, as opposed to plowing it back into the system in terms of other kinds of services.
So, those are the macro level --
DR. IEZZONI: They are very macro level, but we need to think in those terms.
Hortensia.
DR. AMARO: The other thing that occurs to me is the impact of managed care -- we talked about the impact on providers, but also the impact on the broader public health community if there are certain services that are limited or not provided and then where is the next place that people are going to have to go to. For example, the number of visits for mental health or substance abuse is cut or limited and our city public health or state public health departments going to come in and pitch in. So, the broader -- I would like us to look not just at the impact on clinical services, but also public health because somebody else will have to step up to the plate if certain services are cut back.
DR. HARDING: Who is that?
DR. AMARO: Well, I mean, if you look at what has happened with substance abuse, it is usually states through the federal block grants that end up filling in. We shouldn't have to have that. I mean, that is my opinion. Medicaid should be covering that, but for some reason for substance abuse that has not been our approach, except for a short term, you know, detox and -- so, the state has had to step in or city departments provide funding a lot of times for all those pieces that aren't provided in our medical --
DR. HARDING: What really happens is it has been transferred to corrections.
DR. AMARO: But to the extent that it hits all kinds of systems, you know, it hits the foster care system. It hits corrections.
DR. IEZZONI: Richard, did you have other questions?
DR. HARDING: The issue this morning was interesting about -- that George brought up, but, you know, I had the feeling that like the Federal Government doesn't know what questions to ask. So, the data we get is going to be suspect at best and misleading, most likely. So, we have to come up with the questions that are going to help us determine whether we have a good access, quality of care, outcomes and so forth. We don't know the questions. And they were saying kind of they don't have those right now.
DR. IEZZONI: We have three state people here and that is why -- who were -- we are happy to have them. Can you give us a sense of how some of these questions might be different from a state perspective?
MS. WARD: I don't think they are any different. There is just the size difference. And I was struck by that same thing, Richard, about if you are going to spend the amount of money and take the risk of the kind of huge data generation that they are talking about, particularly, to me, the risk, since we spend a lot of our life debating security and confidentiality, if you are going to justify the risk to that size of data, you have got to promise those people you are going to get something out of it.
And they don't even know the questions. We do it in our state. We are dumping these huge databases and we are doing it because it is -- we are doing it -- we are justifying doing it because these are people who are using public dollars.
We do have a two-tier system. Those people have
-- they can't complain about the kind of data integration we are doing because they are recipients of public dollars, but we owe them the right to have their data as secure as anyone else's, but I don't think we have justified to ourselves the cost or the purpose or the burden on the reporters for doing this. I was very interested in her comment that several of the states have now just said that they haven't gotten anything back for the millions of dollars they have spent integrating issues databases. Well, of course, because they didn't start with what was the question.
DR. MOR: Actually, her comment related to the eligibility -- integrated eligibility determination systems, that EDS and other companies have actually put together for them. It has nothing to do with the data. It has to actually do with the uniform eligibility processes and not
-- they are just looking for up front mechanisms to rationalize the eligibility process. It doesn't mean at all that they have a downstream system of taking claims or event level data.
MS. WARD: I realize that but they are still saying that the cost even at that level, they are not sure it is justifiable in terms of what it is getting them. I am concerned it is because we haven't decided what the questions are first.
DR. IEZZONI: That is why we are starting --
MS. WARD: Right. And I think that is one of the things we ought to say to many of these agencies. Until they can be more clear what the justification and purpose of this, I am not sure we should be running down --
DR. HARDING: We have got these babies rolling and they said, well, what is the termination date or when do we know that we are doing a good job or something. Let them roll and we will see. That was pretty scary to me. What is the outcome that we are really looking for? And do we have a way to --
DR. CARTER-POKRAS: I am trying to get to tag on to the comment about the need to look at the impact of providers as well as public health. One of the concerns we have at the Office of Minority Health is the impact on minority providers because we know that, say, black physicians are more likely to serve Medicaid patients and Hispanic physicians are more likely to serve uninsured.
So, right now we find out because they don't have the credentials, they are not being enveloped into this movement into managed care. They are not being brought into these HMOs and they are at the risk of seriously losing their business, losing their ability to practice medicine. Because they don't have the credentials, they are not being taken up by the managed care organizations.
But they are the ones who are providing this essential care that is not going to be covered by anybody else, like uninsured persons.
DR. HARDING: Can I come back at you, though? In my town, Columbia, South Carolina, the black doctors are taking care of the wealthy blacks. They are not taking care of the Medicaid population.
DR. CARTER-POKRAS: This is at --
DR. HARDING: No, I understand, but there is that kind of a -- that you are going to get that, a kind of flight away from it because it is so frustrating and all the other things and they are going to -- I don't know who is going to take care -- clinics and so forth, but it is interesting to see that happening in our area, that they are going towards the wealthy instead of the Medicaid in their internal medicine practices and so forth.
DR. CARTER-POKRAS: The physicians that we are hearing about are the other group, who are --
DR. HARDING: I believe you. I am just saying this is kind of an unusual situation.
MS. GREENBERG: I was just going to say from the issue of, you know, not maybe having decided on what the questions are or how they would address them, I think there is a little bit more understanding about what the questions might be, but really not much at all sense of how they would address them and whether people are there to address them because this whole issue of encounter data, obviously, HCFA has been very conflicted over it from the beginning. And I was quite involved with it when I was -- a few years ago, when I was working in the Office of Managed Care and when we came up with the McData data set and the real argument, one of the main arguments against -- and this is the burden, I think, on the issue of federal/state relations and all of those played into not requiring it, but also there was a real concern that if we require all of this encounter data, we have to tell people what we are going to be doing with it, but the only way we could even begin to justify it is to be able to, you know, say these are the types of studies we are going to do. And then we would have to do them and be able to follow back with them.
Despite, I don't know, 30 year, 20 year track record of using the Medicare claims data, you know, fee-for-service data, extensively and in many cases productively, both it seems, HCFA and their contractors, there didn't seem to be much of a sense of whether that could be, you know, applied to encounter data coming out of the managed care, whether -- you know, and the connects there. So, that really has prevented a -- you know, making a strong case for encounter data and then going down to the state level and going to the plans, et cetera.
DR. IEZZONI: Well, I think it is implied once you begin to look at the questions because if we just look at the questions that Lynnette has written up there, how many of them can be addressed by encounter data?
Let me just -- shall we anoint you an honorary member of our committee --
MS. GREENBERG: But how many of those can be addressed if you have no encounter data? I mean, this micro level. I don't know.
DR. IEZZONI: Do you have any questions about Medicaid managed care that we should put on our list?
PARTICIPANT: I will speak up if I have any.
DR. IEZZONI: Okay. All right. We have been told how this is going to play out. Okay. Great.
Anybody else have anymore questions? There is a large range of questions up there.
Okay. Let's go then to the next level of our camera. I don't mean to beat this dead horse, but I think it is actually useful because the next level is the population and we are the Population-Specific Issues Committee. And we heard from our speakers this morning about a number of populations. We heard about infants and children and their mothers.
We heard about people with disabilities. We heard about people with HIV/AIDS. We heard about the mentally retarded. We heard about a bunch of different populations. As we begin to think about what we want to focus our study on for the next year, let's just list the populations that we might be interested in asking these kinds of questions about.
George, do you want to start?
MR. VAN AMBURG: Well, clearly, infants and children is a critical one.
DR. IEZZONI: Infants and children, yes.
MR. VAN AMBURG: And children with special health care needs is another one.
DR. CARTER-POKRAS: How about adolescents and young adults because there is an age break as to when you are covered with insurance and there is a general issue without insurance.
DR. IEZZONI: From Medicaid, does anybody know how that age break splits out? Is there an age at which --
MR. VAN AMBURG: 18 or 21, depending on whether they are developmentally disabled.
MS. GREENBERG: Perhaps some of the extra services that --
DR. IEZZONI: We need to find that out.
[Multiple discussions.]
All right. Hortensia.
DR. AMARO: The other obvious ones are racial and ethnic groups.
DR. IEZZONI: And we heard about that not just from the patient level, but also maybe the provider, the doctor and nurse level as well.
DR. AMARO: I am also very interested -- maybe this fits more under events -- I am not sure, but I am very interested in considering the role of substance abuse in hospitalizations and costs to the system. I am very interested in sort of that population and how it is going to fare in this because I think it is a population that has high need for service and that this costs the system a lot and that the needs are not met well.
But maybe that can be put rather in the population center then?
DR. IEZZONI: Population, substance abuse and mental health tend to track together. They are separate, but I think that that would be a population and, obviously, I will chime in with people with disabilities.
PARTICIPANT: Migrant populations are always a problem for Medicaid.
DR. IEZZONI: Homeless and migrant populations -- are they in Medicaid managed care?
PARTICIPANT: I think the migrant health --
DR. IEZZONI: The Medicaid managed care?
PARTICIPANT: They have no care except the clinics during the months that they are working.
DR. IEZZONI: We should find out about that, the migrant --
PARTICIPANT: At least for those states that have migrant populations. I guess it is not a Medicaid issue for states that use them and don't provide care. Usually, they are not there long enough or they don't qualify in terms of the weekly salary for Medicaid.
DR. IEZZONI: Are they in Medicaid managed care programs, though, do we know?
[Multiple discussions.]
There are states that only have Medicaid managed care.
PARTICIPANT: Your state does.
DR. IEZZONI: My state. I know. I knew that as I said that. I know what Bill Weld has been up to.
MS. WARD: I would just add rural. The doctors you are describing, Olivia, are the ones we have in Washington, who are in the rural parts of the state, who can't get access to any other population to care for, other than migrant health centers, community health centers. And they are all either uninsured, underinsured or just barely Medicaid eligible.
The major health plans are not going after them. They may be credentialed, but they are just not thinking -- they have their network of providers and they claim that those networks of providers, who go out to those rural areas, that they are not picking up the provider, who are already local and the communities are very anxious because they have relationships with like local providers, who may, in fact, be more culturally appropriate for them, but the Blue Cross of Seattle is not going to add those physicians to their provider list.
They claim that they will be able to go out and provide them sort of on an itinerant basis.
DR. IEZZONI: Vince, populations?
DR. MOR: There is the long term care population, which would be in addition to people with disability, it would be old and disabled.
DR. IEZZONI: I will confess that I was somewhat confused by the discussion of the dual eligible. Is that what you are talking about?
DR. MOR: If you look at the chart that they present, is it actually the dually eligible individuals in the world, in the U.S., are sort of bimodally distributed. They are much more likely to concentrate on the 85 plus. Therefore, the impoverished institutionalized -- spend down already occurred in the community, very old folks and the younger disabled. So that they are both -- it is very much bimodal from an age distribution perspective.
So, yes, there are both. In fact, you know, probably about 70 percent of the long stay in the nursing home population is dually eligible.
DR. IEZZONI: And are they in managed care?
DR. MOR: Right now, the only thing close is this EverCare model.
DR. IEZZONI: That is in Minnesota.
DR. MOR: It is United Health Care and they have about five replicates across the country. And the ONLOC and the Minnesota example that they gave. Those are community-based managed care in that sense.
Under the dually eligible program that Massachusetts just submitted, that long term care population is absolutely 100 percent in the option. The problem of the waiver is under Medicaid all these people have a choice.
DR. IEZZONI: I am sorry. Poor Gracie. This was a disaster. I am so sorry that --
PARTICIPANT: And you are also going to include chronic?
DR. CARTER-POKRAS: Actually, I was thinking of some examples of diseases, such as diabetes and asthma, that seem to really need better management.
DR. HARDING: I was going to say the same thing. We call them the medically fragile children that are diabetic or have a bunch of different things going, epileptic, maybe -- and then have in addition to that behavioral problems or all kinds of things.
The other dual -- the dual diagnosis, you know, that I think of, of course, you know, is alcoholism and a psychiatric disorder or alcohol or drugs and a medical disorder. Those are really utilizers with diabetes and alcoholism or something along those lines.
DR. IEZZONI: And AIDS.
DR. HARDING: And AIDS.
DR. IEZZONI: I guess we should put it -- we don't have HIV/AIDS up there as one of our populations, but we should.
Okay. Hortensia --
DR. AMARO: No, I was just thinking we are coming up with all of these. Maybe later we can go back and face those --
DR. IEZZONI: Well, that is what we are going to do now. Because I think that this has been helpful. We have got a lot out there on the table, but I am thinking, okay, how are we going to deal with this huge volume of thinking because we are going to have to come up with a task order work plan.
So, let's do one more little around-the-room exercise and let's -- yes.
MS. GREENBERG: I just wondered if I could add one more. I know you don't need anymore, but since the majority of the Medicaid managed care have been addressed to mothers and children, I wonder where we left the mothers off.
DR. IEZZONI: Right. I think infants and children was meant to include mothers.
[Multiple discussions.]
DR. MOR: When they were talking about a family ID number, it is basically another ID number for mom. Once you get all the kids hooked to a mom, they can be hooked no matter what. But you have to be hooking them to a mom.
DR. AMARO: If we could do that, that would go three-quarters of the way.
DR. IEZZONI: All right. Great.
Okay. As we look at the kind of questions that we are interested in answering and the populations that we are interested in asking the questions about, what are the data systems that we need to begin to worry about? Because to answer your macro level questions, Vince, we are going to need entirely different data sources or some very different data sources than to answer a question about, for example, immunization.
DR. MOR: I bet you could answer virtually every question on the table here, except those related to certain of the health quality issues unambiguously or relatively unambiguously, not that you could answer anything unambiguously, using the existing encounter, enrollment and provider level data currently being contemplated under HIPAA.
DR. IEZZONI: Well, let's think about that for
a --
DR. CARTER-POKRAS: Not currently existing, right?
DR. MOR: Well, we just all wrote a letter to the Secretary saying do it.
DR. CARTER-POKRAS: Because we have heard from managed care plans that say that they can't -- they don't have it. They don't have individual level data.
DR. MOR: But they will.
MS. GREENBERG: The thing is, will they?
MR. VAN AMBURG: Will they because they don't have a transaction. They don't have an electronic transaction.
MS. GREENBERG: This doesn't require that the information be collected. It only requires that --
DR. MOR: Fine, fine. Were that to be in place for all transactions --
DR. IEZZONI: Okay. All right. So, if we list data --
DR. MOR: -- for events.
DR. IEZZONI: -- one is encounter data and enrollment.
DR. CARTER-POKRAS: Individual level encounter data.
DR. IEZZONI: Individual, that is by definition an encounter.
DR. CARTER-POKRAS: No, no, no. Some HMOs have -- managed care organizations have aggregate level. Okay? So, they can --
[Multiple discussions.]
DR. MOR: That is how they are asked to report it.
DR. IEZZONI: But Hortensia wants to know about health status.
DR. CARTER-POKRAS: And that you have to do the linkage.
DR. MOR: Well, I would like to know about health status as well.
DR. IEZZONI: Health status you cannot get off an encounter. You have to do the linkage from encounter data to the enrollment eligibility determination.
DR. CARTER-POKRAS: Not for health status.
DR. MOR: Well, I think that is where we should push to say that what was in the original holding place should be recommended.
PARTICIPANT: You mean back to our core data set?
DR. MOR: Back to our core data set.
MS. GREENBERG: I can't believe a new member even said that.
DR. MOR: Of course.
DR. IEZZONI: Because these are data items that we don't have. Health status is a data item that is not on the current enrollment form or the current encounter form.
MS. RIMES: But at the same time, and let me use a more bizarre example, if HCFA is going out and collecting CAPs and HEATUS and the enormous numbers of God knows what on HMO populations, including the Medicaid population, which has health status and has your ADLs, your IADLs, all of those things, so the systems are out there.
MS. ARAKI: What did you say before?
[Multiple discussions.]
DR. IEZZONI: Consumer assessment of health plan survey. We are just listing information sources right now.
MS. GREENBERG: So, consumer surveys.
DR. IEZZONI: Okay. So, those are surveys, the CAPs and the HEATUS.
DR. MOR: The biggest gaps are the nature of the information about the providers and that is the gaps that we -- this particular committee has been most upset about in this whole deliberation about the data systems and the providers is that how do you gather encounter data and how do you code encounter data for the taxi driver, for the home health aide, for those other people who are actually extending much of the care to these kinds of populations? Because we don't have any code sets to document those activities.
DR. IEZZONI: So, then, that is basically data about non-traditional providers or --
DR. MOR: And what they do.
DR. IEZZONI: And what they do.
It is not a good word, but we will call it that for now.
[Multiple discussions.]
DR. MOR: Well, taxi drivers are just sort of the most bizarre, but it is the home health aide or the personal care attendant or the OT aide or what have you. Those are people -- there are no procedures and they haven't gotten -- at present, there is no contemplation for giving them billing numbers or numbers.
Eventually, they will be rolled in.
[Multiple discussions.]
But the next thing also is the nature of the information about providers and that that is still unclear.
DR. IEZZONI: There are other questions up there, though, Hortensia's question about the impact on public health. Hortensia, where would you get that information from? What kind of information would you need for that?
DR. AMARO: I guess it is related to access in that -- I was thinking of situations where certain kinds of things wouldn't be paid for and then other parts of the system would have to pick up on that. I don't know, unless you did specific sort of case studies of cities to find out what is happening to different types of models and whether certain types of care have dropped out and had to be picked up.
MS. GREENBERG: HRSA -- again, it is not individual encounter data, but they have a data system for their community health centers, migrant health centers, and they have been very interested, obviously, in the impact of managed care on those essential providers.
DR. IEZZONI: We talked this morning about integrating data at the individual person level from a variety of different social programs, the WIC program, even the Department of Motor Vehicles. South Carolina was the exemplar --
[Multiple discussions.]
We need to include data sources from other social support services that are provided at both the federal, state and local levels by authorities under those three levels.
DR. MOR: See, Hortensia, I think about, for instance, the clinics in south Florida or something like that that I am familiar with. They have a provider number and the people they serve and the encounters they provide can be categorized in terms of paying, not paying, of what class or not what class, what kinds of services apply to a provider, to whether or not they are reimbursed or paid or not paid.
You can actually aggregate that kind of information to the level of a provider over time and look at changes in the revenue flow, cash flow or mix of services and mix of people provided.
DR. AMARO: So, for example, there was Medicaid -- under Medicaid managed care, there was some type of care that had a limitation, you know, so many visits and then city health department decides that, well, you know, this isn't enough. We need to pick up on this --
DR. MOR: As long as there is a claim coming through that provider on encounter.
DR. AMARO: -- as long as they are required to fill that out, regardless of who the payer is. Right?
DR. MOR: Right.
DR. AMARO: Because if it is the city or the state that is filling in --
DR. MOR: The complicated issue is when those events get done -- provided outside of the system.
DR. AMARO: That is right.
DR. MOR: If the public health department opens up a new clinic that is just free, like HIV testing, there is no data whatsoever on anonymous testing.
DR. AMARO: Or somebody that isn't covered -- something that isn't covered right now, like residential substance abuse treatment that is long term that is not covered, they get reimbursed through state contracts and, you know, so, something like that wouldn't come in, would fall outside the system. You know, in health care, there may be other examples.
DR. MOR: I don't know much about those on the substitute side. If those people were providers, then they would record that. But other than that, you wouldn't see them. They would be invisible unless they are providers.
DR. AMARO: Well, there are some examples in substance abuse, for example, you can bill in the postpartum period for a certain amount of enhanced substance abuse treatment for pregnant women and postpartum women, but then after a certain amount, you are not going to get paid for any of that. So, then the state or the city might fill in, you know, in certain places to give continued care.
So, you know, if somebody was providing that kind of continued care that wasn't a regular provider under Medicaid, then I guess you would be able to get it unless it fell outside of the system in the way you are saying. So, you might capture a lot of that.
DR. MOR: But that would get under, for instance, the situation of carve outs. If that woman were under managed care from some provider but that person -- that Medicaid plan had sort of said, oh, we are going to carve out substance abuse and as part of the carve out for substance abuse, when the doc calls in and says I need a substance abuse consult here, oh, fine, we will be happy to give you three. That is what they are entitled to. That is it. Bingo.
Those three, if the carve out were actually contributing data, would show up, but in the past, they might have gotten 12.
DR. IEZZONI: George.
MR. VAN AMBURG: Let me be radical here, throw out something for discussion.
Everybody has gone on the assumption that we need an encounter data system and I would like to challenge them to say why. This morning, we looked at this chart. Tennessee submitted 12 million records so far and I haven't seen one item of worthwhile information out of that yet.
The issue to me is that the health care provider has a portion of information needed to answer these questions, that whoever is doing the study would go and get when they need to get it. I mean, think of the hundreds and hundreds and millions of encounter records that they have submitted with no thought to quality, no thought to completeness, just to get the record in because it is a requirement, part of what is going on right now with the fee-for-service things, except that they get a bill attached to it.
And I am not sure state legislators and others are going to believe some of the data coming out of these encounter data systems. When they say, oh, yes, our people are getting good service. We had all these encounters. Well, how do you know? Why do you need an encounter data system?
You need the data available to go do a study if you want to.
MS. GREENBERG: You need the capacity to create the encounters. You don't necessarily need all the encounters --
MR. VAN AMBURG: Yes, but if you look at the Medicaid people and they say, oh, we need an encounter data system. We have to collect the same thing on every visit for the managed care that we do for fee-for-service. We are going to have a phantom billing system. And I am not sure that is the way to go. I am really not. And you also end up having to face that privacy issue, which is going to start linking all these encounters to things, which you wouldn't have to do if you were doing a special study.
It seems to me that the official health information on the patient is in the medical records and that has got to be the source of any analysis that you want to do, not necessarily an encounter because that is not an official record essentially.
MR. GELLMAN: Could I ask a question following up on that?
If you look down the road as information systems develop, whether you have centralized reporting of data, centralized databases, linked databases, network -- all the information is going to be somewhere on a network. So, it is going to be retrievable if you allow it to be retrievable, regardless of who you report it to and whether you have it all compiled in one place or you just -- the compilation comes at the moment of need, may not be a significant difference between one and the other.
It may be a long time before we get there, but --
MR. VAN AMBURG: But that then envisions that everything is in electronic format at the provider, when we are not there yet, a long from there yet, that the maintenance and the holding of that data is the responsibility of the provider and not a government agency and you wouldn't compile it all. You would only compile the things that you wanted to do a study -- for example, you are going to look at access to care. You might want to look at the medical care records of kids who went in the hospitals for asthma, their managed care versus my managed care. That is all you want to look at.
You don't need everything else.
MS. GREENBERG: I think what is really the perspective that is sort of missing in this discussion is -- I am thinking of Kathy Colton, but it is the plan. What does the plan need?
DR. MOR: What does the provider need?
MS. GREENBERG: What does the provider need.
DR. MOR: The provider needs that stuff.
MR. VAN AMBURG: That is right.
DR. MOR: The provider needs that stuff not about patient Q, but the provider needs that about all patients so that the provider can deal with issues of quality, their own internal quality assurance and quality control processes, their own -- they may not do it but they need to do it.
MR. VAN AMBURG: Yes, if you are looking -- I am not sure whether you are talking about an individual personal provider or plan.
DR. MOR: Well, most providers practice in groups now. I am not talking about a plan. I am talking about groups of providers. They need to have that. They need to know, particularly if someone is going to impose upon them capitation. As soon as someone imposes upon you capitation, you can't not have the information. If you don't have the information, you are lost. You will lose money by the end of the month.
MS. WARD: I think that is a key direction because if we keep looking at this as the Federal Government has to have these billions of records to answer the question about health status, I would say we didn't make the decision to go into Medicaid managed care as a Federal Government because we thought it would provide better care. It was because of financing.
Even if we had a billion and one pieces of data and proved two years from now that Medicaid managed care was, in fact, a potential way of reducing the health status, would we, in fact -- would anything happen because we had that data? Would anyone actually act differently because we had all of that?
I mean, I think if we could get the providers to want to collect it because it is meaningful because of her practice and that person is evaluating the practice, we would be a lot farther along than we would be continuing to try to demand that this be reported because it is not going to prove to be of any value because it is just a federal reporting requirement.
DR. MOR: These data are only of value to providers to the extent that there are forces in the environment that either force them to compete on the basis of quality or on the basis of efficiencies, cost efficiencies. Without that, you know, it doesn't -- just leave it all on the paper.
DR. AMARO: Don't you need this data to, you know, answer that question of whether it is cost effective to provide this service? I mean, how do we know if there is a capitated rate that, you know, patients are getting something for that? I mean, how do we track that, you know, unless we are sort of willing to just leave it wide open?
DR. IEZZONI: I am curious, George, how you feel about this notion of doing a special study to look at one of these questions versus having an ongoing kind of monitoring of these issues that would be kind of ongoing as kind of the way that nurses monitor vital signs, for example, so you can find a time when somebody is out of whack, rather than deciding that you are going to do a special study?
MR. VAN AMBURG: Well, I think there is a place for surveillance, ongoing surveillance, for things, but I think a lot of the questions we are asking are not necessarily ongoing surveillance questions.
DR. IEZZONI: Such as which would be ongoing surveillance questions from those that are out there. Which ones would you view as ongoing surveillance?
MR. VAN AMBURG: Well, let's see. Probably the provision of preventive services would be something you would want to monitor continuous on a regular basis. It is more of a process measure than an outcome measure. And I am not sure you will be able to monitor some of this stuff from encounter reports.
DR. IEZZONI: No, I didn't think that you could. Marjorie and I were having a bit of a disagreement about that.
MR. VAN AMBURG: No, I really don't think so.
DR. CARTER-POKRAS: Well, some health outcome monitoring is -- the analysis that has been done by Mary Gornick(?), et cetera, with the Medicare data, they have looked at health outcomes.
DR. IEZZONI: Mortality is really the only outcome I have taken a look at.
MR. VAN AMBURG: There is a good example in Medicare is if you are looking at cancer, you should be looking at a stage of diagnosis. Medicaid can't do that.
MS. GREENBERG: We should have put SEER down as a data source.
MR. VAN AMBURG: You have to link it to a cancer registry or some other source or back to the medical records. That is a special study.
DR. IEZZONI: I think this issue of what do states want to be knowing in a surveillance mode versus as a special study mode is an interesting question.
MR. VAN AMBURG: Well, and it depends on who in the state you are asking, whether you are asking the legislature or the health people.
DR. IEZZONI: Well, but I think that is relevant to what we are doing here because how those -- how that question is answered would have a big impact on what data systems are needed to support the monitoring versus --
MR. VAN AMBURG: But Elizabeth is right. The program is being sold as a cost savings program at the state level. Okay? And you know that you have got the legislatures and the governor's office is going to be interested in how much money they saved and how much isn't being spent. And you have another faction over there saying, well, is the population getting the services.
Those questions are not necessarily being asked right now. Those are the two questions that are going to be the key issues in the political arena and the public health people have a different set of questions.
DR. MOR: Because the state legislature -- it is not so much even saving money is it is actually putting a cap on their annual obligations, so that they are not -- it is not six months into the next year when they know what they spent last year on health care.
MS. WARD: Because they are getting killed by their supplemental --
DR. MOR: I mean, because they have got basically the same open entitlement problems that the feds have got, many of the states have got.
DR. IEZZONI: But is that an ongoing surveillance type of requirement versus --
MR. VAN AMBURG: But you will know that if you are going to have capitation --
DR. MOR: If you have capitation, you know -- the providers are at risk or the plans are at risk. You are paying this much money. That is it, but the public health people want to know what are the potential costs associated with that.
DR. AMARO: I think the public wants to know that, too.
DR. GREENBERG: The public may not care that much about Medicaid managed care. I mean, I don't know that there is a -- I am not saying they shouldn't but I think the public is, obviously, concerned about managed care.
MR. GELLMAN: The broader issue here is you have different audiences at different times for different questions and some of them may want more continuous data and others just want to know now and again and others who don't want to know the answer to some of these questions.
DR. IEZZONI: So, that is another layer of issue here that we have to deal with.
MS. GOLDEN: Some of the questions are being put forth to the public by some researchers. Even though the public may not have initially raised the issue, there is research in these fields and especially in the area of the impact on minority populations. And HCFA, I know, has entertained a number of little grants that have been looking at this, but from what I saw, there is a quantum leap between using the data appropriately and jumping to the conclusions that are being made from the data and it is being put forth to the public. So, there is an indoctrination process that is going on.
So, somewhere to get around -- turn that around might be an appropriate thing. Even though it still may be special studies, there is still that issue.
DR. IEZZONI: Okay. All right. Where do we go from here?
DR. CARTER-POKRAS: I am sorry. There is one other group and it doesn't sound like they are in the world, and that is the folks who are responsible for civil rights monitoring and enforcement because their take on this within the Office of Civil Rights is that even though we haven't come straight out and said that we need to make sure that the individual level encounter data is collected and that the linkage is being performed to make sure that everybody is getting the same quality of care, they say that when it comes down to it, the managed care organizations that we are paying their bills, that they need to be able to demonstrate in the future if there is a question, that they are complying with civil rights laws.
Okay? So, that is like a third piece as far as the need for this kind of --
DR. IEZZONI: Kind of a continuous need, rather than a special study sort of need.
[Multiple discussions.]
MR. VAN AMBURG: But you are saying that plans have to be able to demonstrate that. The individual plans have to be able to demonstrate that. It means they have to have the data available in the plans.
DR. CARTER-POKRAS: The Department doesn't specify what you have to be collecting and how you have to have it handled, that you just need to be able to demonstrate that you are complying with the civil rights laws.
DR. MOR: When I was talking about encounter data, it doesn't necessarily have to have -- be archived by the Federal Government. That is a whole other set of issues.
MR. VAN AMBURG: I understand that and I agree --
DR. MOR: I am not even sure it has to be archived by the state government.
MR. VAN AMBURG: No. I agree with that, too, but the way it is being used this morning was an encounter data system being handled by the state and the Federal Government.
DR. MOR: That was in the context of those demonstration programs. What they were going to mandate for the local plans -- so, what the dually eligible -- the reason they were getting -- they have gotten almost no data out of most of those is because those are state plans that are supposed to -- state operated plans, that are supposed to be giving money to the -- data to the feds as part of the evaluation.
I don't know in all cases -- for instance, in Massachusetts under the plan that they have just submitted as a waiver for the dually eligible, there were very detailed specs that are written up for what kind of information the plans had to maintain, but it wasn't clear that those data, the micro level data, were to be passed on to the state. At least I didn't see that part of it. But they had to be able to generate reports to assure the state.
MR. VAN AMBURG: Right. Now, in Michigan, which is a 1915(b) waiver, which wasn't on the list of required data, they are planning a massive encounter data system. Just automatically assumed that they needed that.
DR. MOR: For the state?
MR. VAN AMBURG: Yes.
DR. MOR: And the state is going to get it?
MR. VAN AMBURG: Yes.
DR. MOR: Aren't they putting this out to bid to plans?
DR. MOR: Well, the plans are going to have to submit the data. They will probably put it out to bid to someone to contract to do the processing maybe. Who knows? But it is that thinking that bothers me more than anything else.
MS. WARD: I think that is a very good way of trying to cut because I am the kind of person, who sits and loves to think about the data I can get my hands on. I am normally also drooling over that kind of stuff, but I am becoming less interested in that kind of warehousing of data because it is not particularly making -- we are not getting anywhere with all that. I think if we could take a different tact, matching up questions to benefits, to where does it have to be collected and housed and kept as a different solution to always assuming that we get from here to these massive state and federal systems with boring, billions and billions of data.
DR. IEZZONI: Let's take that exact framework, which was beautifully articulated as the jumping point for our discussion right now of what we want our contractor to do. Okay? Because it is obvious that there are a lot of questions out there, but we only have two people who are actually going to be paid from the room, who have been helping us think about it. It is obvious that there are a lot of populations we are interested in and there is some disagreement in the room about what data might be appropriate or needed.
MR. VAN AMBURG: It is how it is collected and housed more than what the data are.
DR. IEZZONI: So, as we begin to think about what we might have a contractor do, knowing a little bit from this morning about what some contractors are already doing with managed care on the demonstration projects, with multimillions of dollars. Yes, these $6 million evaluation contracts.
But I agree, the six million probably doesn't go that far once you start talking about five states. No, it doesn't.
What would people find most useful in terms of some kind of very smart, busy, well-informed people who could help us with this? What would you want them to do? What might be a way that we could us a contractor most productively in this?
MR. VAN AMBURG: Well, don't you think we ought to decide what product we want first?
DR. IEZZONI: All right. Let's start there then.
MR. VAN AMBURG: I mean, it would seem to me that we would want a product and then we would want the contractor after we get to that product.
DR. IEZZONI: Well, I will just say that I had envisioned the product being a report that would go through what are the concerns about Medicaid managed care, probably from the perspective of states to the extent that we can have that and then look at what data systems might be appropriate or necessary to be able to answer those questions and then looking at what is going on in the country around that to see whether we, in fact, have the data systems that will allow us to answer the questions.
DR. AMARO: Going back to our charge, it seemed that we said we were doing something a little bit beyond it, which is really then making recommendations about the kind of systems that would have to be put in place.
DR. IEZZONI: Right. That would be the logical kind of conclusion to that, the inadequacies, what the gaps are, you know.
DR. MOR: Well, let's think about this from the point of view of the presentations this morning. They made a number of recommendations that if we were to do something that would be particularly useful, some of it might be, you know, grapple with the issue of, you know, how are states dealing with this issue of integrating information across multiple systems. That was one suggestion.
The other was is there --
DR. IEZZONI: ASPI has --
DR. MOR: Okay. All right. But somebody else suggested that we could be helpful if we thought of -- I mean, in some sense like model contracting specs for what a state would require of their managed care plans if they were going to go ahead and proceed with this so that the plan could generate information of use to the state and of use to itself.
DR. IEZZONI: That is why you have to first define what the state wants to know, to know whether it is of use to them. You need to know what information they have and then you can begin to think, okay, what would be the specs or the ideal information system based on the gaps.
DR. MOR: Maybe another way to think about it is to say here is what the states' questions are and here is what questions of managed care companies might be, who are in this business. How would you actually present the results? I mean, how do you turn those data into information that would be usable and helpful, into some kind of reporting form?
MR. GELLMAN: I am not sure -- this is going to be argued from ignorance here since that is what I bring to the table on a lot of this stuff. But I am not sure I understand what the ultimate goal is. I mean, from a much broader perspective, what is it you are trying to accomplish? I mean, there are all these great questions and whatever, lots of data that can be manipulated all different kinds of ways to produce all different kinds of information.
Question: Ultimately, what is the goal of all of this? Are you trying to use the information for political purposes? Are you trying to use the information to create a way for the system to correct itself and make sure that it is accomplishing its goals? Are you trying to do this to provide -- what in a broad sense is the goal?
DR. IEZZONI: I think the national committee has historically been involved in highlighting areas where there is inadequate information to answer questions. There is a long history of the national committee having reports such as that, that have, I think, been useful in -- I mean, Marjorie, you can leave them here -- in, you know, highlighting this and beginning to get people to think about how to improve the data that are available.
MR. GELLMAN: The data for what --
[Multiple discussions.]
DR. AMARO: Can I give it a try? I think that, you know, if we go back to our charge and our work plan, there were a variety of populations that this committee is
-- our purpose is to look at how adequate is the information that is out there and how can the systems of data-gathering be improved to give us information on those systems -- on those populations. So, one of the key dynamics or issues that is going on that is affecting these populations is Medicaid managed care.
We said this is a big event going on. We don't know much about how the health of these populations is going to be affected and we need to think about, well, what data systems are in place that may help us start to be able to look at that. I think that is how we first got here.
It seems to me -- I was going to suggest that we heard it about three, four, five states and they are under the RWJ funding for integrated data approaches -- it seems to me that a good place to get started is to look at what have South Carolina, Maryland, Illinois, Iowa, Vermont done to -- they have been in the forefront in this and what has been the progress under this RWJ effort because it seems that they have been doing work for while and that if we looked at that, we might be able to think about some things that might be useful more broadly.
MS. WARD: I think what ASPI has done is an inventory of who is trying to do large integration. What has not been asked is for those -- are there a couple of states who are -- maybe South Carolina is the one to look at and say what is it costing them to do it and what is the value and have they, in fact, been able out of those billions of records answered the question. Has the health status of the people in Medicaid managed care gotten better or worse?
DR. IEZZONI: Yes, I had thought that we should do a couple of case studies that would do exactly what Elizabeth --
MS. WARD: And maybe Illinois is the other state, but from that inventory of states that have done sort of this whole massive -- might replicate what would be -- what we have already stated as a committee would be something like the encounter record, which this committee has already put enough work into recommending. I don't think we need to go back over that.
DR. IEZZONI: But I think that these do need to
be --
MS. WARD: -- electronically available.
DR. IEZZONI: These do need to be states that have a heavy penetration of Medicaid managed care and that have diverse populations. Like I would argue against Vermont, for example, because --
[Multiple discussions.]
Yes, South Carolina is low on Medicaid managed care. So, that would be one argument against going to South Carolina.
MS. WARD: But if they are using their data to answer the question, has the health status changed from collecting encounter data, I don't think you -- I don't know what different would it make if that encounter data were from a regular Medicaid or a managed Medicaid?
DR. GREENBERG: Well, just thinking of the whole issue of has health status changed, first of all, Medicaid data has been a problem from the get-go, forget about managed care. I know that we are making some progress. At the national level, we have never had Medicaid data. There have now been some states that we can, but do these states even have baseline? I don't know -- the ones that are going into Medicaid managed care.
The other problem is the eligibility thing, the going in and out and how you can even make a cause and effect is very difficult because of -- some of this has been addressed, I think, for pregnant moms, but we talked already today about services and -- they only go for a certain point and your eligibility is connected to all sorts of things.
So, I mean, I think this is a very complicated type of thing to be able to do in Medicaid, in particular, because of the lack of good data systems in Medicaid and also the lack of continuity.
I am not saying it is not worth -- it is the most important question, obviously, but -- or even maybe not change so much for the same -- but looking at can you look at people who are in fee-for-service and people who are in the managed care and then make some comparisons about do they have the same access to services, are they getting the preventive services, are they getting the mental health or substance abuse or whatever.
But as to the impact on the health, I mean, it really -- it requires (a) baseline data and (b) continuity and I don't know if either one exists very much.
DR. IEZZONI: Pat, you had a comment.
MS. GOLDEN: Somewhere in there is the need to know whether these systems can begin to answer such a question and to evaluate what data would be needed to answer a question and then, at least, give us some sense of the potential baseline database system by including -- which is sort of evaluating the data as opposed to the health status of the population.
MS. WARD: Why do we want the data?
MS. GOLDEN: Why do we want it and what are we trying to learn from the data and do the systems allow us to answer these questions? If not, what are the limitations --
DR. IEZZONI: Let's go back to the first -- the four bullets underneath what we thought was kind of the charge. Identify questions about health and health care services delivery. I mean, can we formulate kind of a product from this? Okay. I think -- Hortensia went back to this, too. I think that people feel comfortable with that, but let's get back to what we need to know to kind of flesh out these bullets and whether a contractor can help us.
MS. GOLDEN: -- would be to identify the major concerns. Either we need to identify them or someone has to identify them, but until that can happen on its own, then you can't evaluate whether the data answers that.
[Multiple discussions.]
DR. MOR: The first three of these are, you know
-- what questions do states have -- instead of what are the questions in general, what questions do states have, do this state have, what data elements are needed to answer those questions because that could vary from state to state? What data systems exist -- do the data exist?
MS. GOLDEN: And I think that is important. Do those questions vary from state to state based on some kind of legislation in a particular state that may not make one piece of information usable or more needed in the states and I think that is important.
DR. MOR: So, do we rely on a contractor to --
DR. IEZZONI: No, no, no, we have to hear from staff from that. Marjorie and Lynnette, have you been listening to the last three minutes of the conversation, where we seem to be heading towards a plan?
What do you need from us to be able to begin to put together a task order? We have this, which may be too general --
DR. GREENBERG: By "this," meaning what is in
your --
DR. IEZZONI: The three bullets.
I mean, if we want to find out what are the questions that states are asking about their Medicaid managed care, which is, I think, one of the those -- the first thing -- I mean, is there a survey that somebody could do of states?
DR. GREENBERG: When you start talking survey, I get kind of nervous because --
DR. MOR: Site visits. Site visits to x number of states. The number of states selected is going to be a function of how much money you have. Basically, you want to do the same thing in multiple states and really it is a question of what states they should be.
MS. GOLDEN: Could that be part of what we ask the contractor to initially do, to evaluate which states ought to be -- and come up with what you are trying to shoot -- you want, obviously, diversity. You might want difference in their -- some diversity in plans or in --
DR. IEZZONI: Well, we heard this morning that every plan is unique.
MS. GOLDEN: Of that, every state is unique. But there would be maybe enough similarities in -- they could be grouped and maybe that kind of evaluation would be the first step of the contractor, to come up with a rationale and a plan for selecting these things.
DR. MOR: What is the price per state? What do you think?
DR. IEZZONI: Well, we have to be modest. This cannot be like the HCFA Mathematica, Urban Institute contract.
[Multiple discussions.]
DR. MOR: What are we talking about?
DR. GREENBERG: I am not sure. I mean, we have had a little internal discussion or e-mail discussion and it may be -- I think it is really -- you have to decide what you want, what you feel would be most useful and kind of go from there, I guess, but it could be -- it could be that you want a study, which would probably be valuable, but of a magnitude that there are not currently resources associated with -- available to do that. I mean, we have been -- you know, we, in our current ability to put, you know, 5,000, 10,000, 15,000 -- I mean, you may be talking about another
-- a project, but the timing isn't bad because the Department is beginning to look at the use of evaluation funds for next year, for the next fiscal year.
[Multiple discussions.]
MS. RIMES: I have been recommending that we do a stage -- you do something and then decide what you want to do next.
DR. GREENBERG: Right. I don't think you are really ready to go for a --
[Multiple discussions.]
DR. MOR: If Mathematica does it, one state is going to cost $10,000 guaranteed.
DR. IEZZONI: How about the third bullet? Because that is not as -- that may not be as labor intensive, frankly, as like the first bullet because there might be some data sets already or kind of -- Vince, this is the question that you were getting at, was the information on the applications codified, you know, this morning when you were asking about --
DR. MOR: Yes, yes.
DR. IEZZONI: So, one of the contractors that HCFA already has might have a good sense of the variety of managed care efforts around the country and, you know, the extent to which they are conducting evaluations.
DR. MOR: But also you wanted to get at do the data systems that they have -- and the problem is without the questions from the state, it is tough to know how good the data systems are.
DR. IEZZONI: No, I know. I am just trying to --
because I think finding out what the questions are is going to be very expensive because it is going to take people going and interviewing and stakeholders. So, what I am trying to think about is what would be the cheapest thing that we could do first to get ourselves started, that we could leverage to begin to think about, okay, what are the states that we should go to to ask the stakeholders about what their questions are.
MS. RIMES: Can I just ask probably an insane question? Is there a possibility that even before we talk about contracting and doing something which is a pretty defined task, that there might be a need to pull some states in and pull some contractors in and have like a whole day's session, where we start asking some of these questions and start formulating? Because I am listening to you all and I am listening to what my own thoughts are at the same time.
I think we had a number of people that were recommended to us --
[Multiple discussions.]
DR. MOR: -- is apparently the guru of all gurus.
MS. RIMES: She knows exactly what is going on --
[Multiple discussions.]
But she would come in for this, is my understanding, as would Margot Rosenbaum(?). And there are a number of people out there that have already done, I think, a number of things.
[Multiple discussions.]
DR. IEZZONI: That is fine. We are going to have to find a time to do that. Does it have to be a full day? Could it be a half a day because --
[Multiple discussions.]
DR. GREENBERG: You picked the 29th and 30th of September.
MS. ARAKI: Yes, the 29th and 30th of September, we could change our agenda for that because we were originally going to do on the 29th and 30th the territories.
MS. GOLDEN: I will probably have the question about this territory issue.
DR. IEZZONI: Well, the territories is a much smaller effort, hopefully. We weren't going to have a contractor for that. So, I am wondering, would you be terribly disappointed if we substituted maybe doing this activity --
MS. GOLDEN: No, I won't be disappointed because, again, unless you have already discussed it, I really need to get some clarification of just what we were trying to get out of even that effort. I was given the names of a couple of people -- I am jumping ahead -- to contact, but I thought it was a little premature without having some --
DR. IEZZONI: Well, we need to talk.
MS. GOLDEN: So, no, I will not be terribly disappointed.
DR. IEZZONI: Okay. That is what I wanted to establish.
So, perhaps what we could do -- the way that we had it originally structured for, I guess -- what is it, the 29th and 30th or something? -- where we are going to do a full day of hearing from people and then a half a day us just sitting around and talking about it.
So, that would probably work very well with this notion of bringing in some of the HCFA contractors who know a lot about this process and then us the next day hashing through what we want. Does that sound like a plan?
MS. WARD: Yes. And think of all your bullets that give them some sort of concentration -- I think No. 3 on that page, gives --
DR. MOR: Or actually if you are going to have the other contractors in, if you can have both Mathematica and Urban in, they talked to all of these folks and they could probably actually give you a summary of what the states questions are from their interpretation, as well as probably direct quotes.
MS. WARD: And whether they think they have got the data to answer their questions.
DR. MOR: The structural questions -- the testimony around those three questions.
MS. RIMES: There is that and the one point that you made, Vince -- there is now the longer term kinds of things that need to be looked at that I know no one is thinking about.
DR. MOR: Longer in terms of how plans, how providers are managing themselves?
MS. RIMES: Or evaluating certain aspects or however it breaks out.
DR. MOR: I could tell you the market is certainly interested in how good that information on these managed care companies are.
MS. RIMES: Yes, but there are a lot of issues that you brought out and there are a lot of issues that are coming around that are more than just surveillance monitoring and no one is addressing them that I know of.
DR. IEZZONI: Why don't we do this: Lynnette, I would like to kind of get a summary of what we have kind of thought about today, just to remind us of where we are coming from. I think that it is a good idea to talk to these potential contractors or the people that we would bring in about the first three bullets here, but that we should also be thinking -- we have a half a day or a few hours the day before the full committee meeting in September, don't we?
PARTICIPANT: I don't think so. There is a breakout.
DR. IEZZONI: A breakout. That is what it was. The breakout is what I meant. Okay.
We have a breakout session. How long was that -- but we were going to be doing something different during that.
DR. GREENBERG: We haven't formalized the agenda yet, so if the subcommittee -- in fact, that was going to be one of the things I wanted to ask you all was if there was anything out of this, out of any of your work plan that you would like the full committee -- that you think a presentation at the full committee would be appropriate.
DR. IEZZONI: Okay. I think it is premature for a full committee presentation, don't you guys think so?
DR. GREENBERG: Oh, certainly from the -- you know, if there was anything you wanted --
DR. MOR: How were we planning to use the time for the breakout?
DR. IEZZONI: We were planning to look at the Bureau of the Census, the Social Security Administration and -- because they are about to conduct some big studies of disability. And we were going to look at how they were defining "disability" and how that compares with how, for example, the NHIS and NHANES defines "disability."
I would still like to do that during that breakout.
DR. MOR: The one comment I have, and I forgot to actually make it on the charge, is that HCFA, the current beneficiary survey also has a definition of "disability."
DR. GREENBERG: Oh, there are like a hundred definitions.
PARTICIPANT: Each survey has a different --
DR. MOR: But to have that on the plate as well.
[Multiple discussions.]
DR. IEZZONI: I know, we are generating a lot of hot air.
Okay. I think we should take a break. Olivia has left. We need to find her because I would like her to be in the room for the discussion of the OMB Directive 15.
So, this has been, at least, I think, interesting. I hope that you have all found it a useful way to get started to get into this issue.
MS. ARAKI: Just one point of clarification.
DR. IEZZONI: Yes.
MS. ARAKI: You want actually the contractors -- I mean, for this meeting here, you want some of these questions asked -- you want these questions posed to the --
DR. IEZZONI: No. What I would like to do --
MS. ARAKI: Do you want to talk about what questions you want to pose to them?
DR. IEZZONI: These.
DR. GREENBERG: The questions in --
MS. ARAKI: Oh, in here.
DR. IEZZONI: The three bullets.
DR. GREENBERG: Obviously, we are transcribing -- we can have the person who does the summary or minutes, we can have these -- we can probably type these up and give them to her so she can incorporate them.
DR. IEZZONI: That would be good because I think it would be good for us to remember where we have come from because questions, for example, about the impact on minority providers may or may not come up from some of these contractors, you know. And so I think that it is good for us to keep in the background the kind of lists of things that we have generated today, just to remind us of the full perspective that we wanted to address.
Okay. So, shall we take a break then until 3:00? Why don't we reconvene at 3 o'clock.
[Brief recess.]
DR. IEZZONI: All right. Let's put some dates on our calendars. How about the week of the 12th, January 13th and 14th? How does that sound?
DR. MOR: If it is Tuesday and Wednesday, I think there is a -- I have to be back by noon. I have a department chair meeting.
DR. IEZZONI: Okay. Monday and Tuesday?
DR. MOR: That is Monday afternoon and Tuesday?
DR. IEZZONI: Monday afternoon and Tuesday.
DR. GREENBERG: Monday afternoon and all day Tuesday.
DR. IEZZONI: Yes. Okay. Is that -- those are January 12th and 13th. We will take off the month of February. Now, we might want to actually go to a state, such as South Carolina or Iowa or even I was thinking Massachusetts.
DR. MOR: I like that a lot.
DR. IEZZONI: Yes, don't you like that one. We should maybe book a time in April --
DR. MOR: Actually Massachusetts would be very good -- I am serious -- for the Medicaid managed care.
DR. IEZZONI: Yes, that is what I was -- I think it actually is a good fit. I didn't want to appear too parochial in suggesting it, but --
DR. MOR: No. Actually there are all kinds of things going on in Massachusetts now where we can get a lot of -- we can get consumers to come in an testify.
DR. IEZZONI: So, why don't we book a time in April that we would do -- can we just say that we would do it in Boston?
DR. MOR: You aren't going to get any argument out of me.
DR. IEZZONI: Does that sound okay? All right.
How about -- oh, gosh, we have April 15th right in the middle of it, before or after April 15th. End of April, like Tuesday and Wednesday, the 21st and 22nd?
DR. GREENBERG: That is the third week in April.
DR. IEZZONI: Yes. Is that okay? Vince?
DR. MOR: Wednesdays, I have standing -- you know, middle of the day, but I will be there until then. I can go up in the morning and be back by noon.
DR. IEZZONI: Right. I know. That is what is so great about Boston.
DR. GREENBERG: So, Wednesdays are bad days for you?
DR. MOR: Yes.
DR. IEZZONI: Yes. I just hate to have poor Elizabeth traveling on Sunday, you know. I just think it is so unfair to her.
DR. MOR: That is fine. I will be there all day Tuesday and then can --
DR. IEZZONI: Okay. So, the 21st and 22nd, we will do Boston.
DR. GREENBERG: April. Okay. That is -- and there is nothing -- there was January and the March will be probably be a full committee meeting, but I don't think we have the dates for that. We need to get them.
DR. IEZZONI: We are probably going to want to do one other site visit. May -- see, this is when the meetings are beginning to start and it becomes awful, doesn't it, you know?
DR. CARTER-POKRAS: What about March and April?
DR. IEZZONI: March and April? Because we will have a full committee meeting in March probably. We could go back to February and think about doing a site visit in a southwestern state or a southern state.
DR. MOR: Puerto Rico.
DR. IEZZONI: No, no, they are not doing Medicaid managed care.
DR. MOR: The only place would be Arizona that is doing much now.
DR. GREENBERG: They have collected encounter data for about -- for a long time.
DR. IEZZONI: Do they have a heavy managed care penetration?
DR. MOR: Yes, it is all -- total. Mandatory.
DR. IEZZONI: I think Arizona needs to be it then.
DR. CARTER-POKRAS: Are you going to the data users conference next week?
DR. IEZZONI: No.
DR. CARTER-POKRAS: Oh, okay, because they are going to have presentations at our session, implications in managed care.
DR. IEZZONI: Oh, that one. Oh, yes, I am heading a session. That is right.
[Multiple discussions.]
DR. CARTER-POKRAS: Arizona is going to be coming and talking about their Medicaid managed care.
DR. IEZZONI: Okay. Why don't we plan on Arizona and Massachussetts being our two states then. How do people like the way that we have just chosen that? Does that sound okay?
DR. GREENBERG: Well, you may find out when you have the contractors come in that there is a better --
DR. MOR: Yes, don't have -- this is not the right thing for the contractors.
DR. IEZZONI: Let's put a place holder in February for a site visit for the committee because I think that Massachusetts, though, is a good place, Vince, don't you think?
DR. MOR: Yes, Massachusetts, I have no argument with.
DR. GREENBERG: I don't know if you want to go to Massachusetts in February, though.
DR. IEZZONI: No, but what I am saying is let's put a place holder in for a site visit in a place where, hopefully, you don't have the same weather problems that you do in Boston, but you might. It might be Iowa. Okay?
February 9th and 10th, assuming, Elizabeth, that it won't be as bad a travel for you because -- that is a Monday and Tuesday.
[Multiple discussions.]
When is President's Day?
DR. GREENBERG: Maybe -- is it the third Monday? I don't know.
DR. IEZZONI: It is not on my calendar. George, you look like you have an official calendar. When is President's Day?
MR. VAN AMBURG: Last year it was on the 17th and -- this year it was on the 17th.
DR. IEZZONI: So, it would be the 16th. Okay. So, the 9th and 10th of February. Let's put a place holder for a site visit. Come on, you guys.
[Multiple discussions.]
So, a site visit for that day. Then we have a full committee meeting in March and we have a site visit in Boston in April. Then we are not going to do anything in May. We will have a full committee meeting in June. And then shall we do -- try to -- like a wrap-up type of meeting in July, a year from now? Yes?
DR. GREENBERG: You mean, wrapping up the Medicaid managed care?
DR. IEZZONI: Well, where we are at the time.
DR. GREENBERG: -- report out to the full committee in September, you probably need a summer meeting.
DR. IEZZONI: And July is better than August. So, how about July 14th and 15th? Vince, you can't have a faculty meeting.
DR. MOR: No, no, no. I am just sort of --
DR. IEZZONI: 1998, July 14th and 15th.
PARTICIPANT: That is a Tuesday?
DR. IEZZONI: Tuesday and Wednesday and it will be a day and a half.
Okay. That was incredibly painful. It probably actually wasn't as painful for you all. You might be really bored. It was painful for us. But thank you everybody and thanks to everybody -- and we really need to start talking about OMB Directive 15.
Is everybody okay with this, please? Yes? Okay. Great.
Hortensia, why don't you lead our discussion.
DR. AMARO: Well, I was going to ask Olivia as well, because she really knows this inside and out since she was part of the writing of this, but as Lisa mentioned, we recently received this -- I guess you got it when we got it, which was around the 15th or the 16th and if people have had a chance to read it, we would like to get some input from you so that when we prepare our comments, we can take those into consideration.
I think we will definitely have to get input from you as well after we write our initial comment. The summary of the recommendations are in the last section, Section 6, which start on page 36937. Do you want us to go one at a time on those or --
DR. IEZZONI: Well, Hortensia, let me just you a more general question. On page 36876, it is the third page of this document, they ask -- they say issues for comment and then in the second column, they say that they would like -- you know, that here are some examples of questions that we would like to hear from responders about. Were you planning or thinking about organizing your comments around these kind of areas?
DR. AMARO: Well, we haven't had a chance to talk, but when I read it, I thought that this was a natural way to respond, both in terms of the general principles that they discuss and then the -- you know, the recommendations using the general principles.
DR. IEZZONI: Because some of -- what the second question is did this research use sound methodological approaches, you know, and I just don't know that -- I mean, that will take a lot of work to think through.
DR. CARTER-POKRAS: Actually, these are suggested questions. They don't have to be answered. People's gut reactions to the recommendations or that I don't like this because -- you know, I don't think it will work for my population and then give the rationale. That is still very useful information.
DR. IEZZONI: I guess what was wondering was whether Hortensia envisioned herself doing a methodological review as a scientist of how the studies were conducted.
DR. AMARO: No, not really.
DR. IEZZONI: Okay. I just wanted to --
DR. AMARO: And I think in addition to the issues they are interested in that are a particular perspective in answering the questions would be from the health data perspective because the use of these categories is going to be broader. So, I think we would want to focus our comments, you know, that way.
DR. IEZZONI: That is a good suggestion.
Well, the comment that you and I were actually beginning to talk about before the meeting started was that I am a little bit concerned about the Middle Eastern category and they say in chapter -- I actually read the detail about the Middle Eastern study that they did. I think it was in Section 4 or 5. There is actually a nice table of contents for people who haven't found it, starting on page 26878.
You know, they basically said that they hadn't done enough research to be able to make a reasonable suggestion, which is probably true. What I would propose is that they do more research on that particular category. Obviously, they won't be able to implement that for the year 2000 census, but I think that it is going to be a bigger issue than it has been heretofore because I think the population from the Middle East is expanding, especially in certain parts of the country.
George, you had mentioned that that is true in Michigan.
MR. VAN AMBURG: Right.
DR. IEZZONI: So, I think that that is one suggestion.
DR. GREENBERG: Would that be in terms of a race classification or as an ethnicity classification?
DR. AMARO: Ethnicity. They considered that they are not recommending it, but they recognized that they need more research. I think that is a reasonable suggestion is to recommend that they do more research so they can get a better sense of how it will affect --
You might want to mention some of the history, Olivia, that you shared with me about the South and Central and American Indians and the new recommendation regarding them.
DR. CARTER-POKRAS: That is another issue that really wasn't researched specifically, but they did look at responses from the 1990 census to see how many people from Central and South America, looking at birthplace, for instance, or their specific ethnic origin that they had written in, how many of them would have selected American Indian, trying to get some feel for that.
But the decision was mostly driven by the fact that the current OMB director said everybody in North America, the original peoples of North America, and so that means if you were north of the border in Canada, then you were included as American Indian, but south of the border in Mexico, you were not. So, we felt that that was sort of an arbitrary decision, especially considering NAFTA. So, that was the main reason why they went with that, not because of research that was conducted.
It looks like it is not a huge number of people that will be affected. But, of course, these are just recommendations where people may have strong reasons why they don't like that.
DR. AMARO: Do any of the committee members have any reaction to any of these that you want to let us --
DR. MOR: My biggest reaction and I have looked at some of the data and I keep trying -- I have become so habituated to the one and only slot, separate question for race, separate question for ethnicity and have a sense from my own data how that works, you know, that changing it will create complications.
DR. IEZZONI: They don't recommend that, though. They recommend two questions.
[Multiple discussions.]
DR. CARTER-POKRAS: -- and actually there is still the option of having a single question that currently is used by many of the reporting agencies. That option is still possible. For instance, the Office of Civil Rights tend to use one question rather than two separate questions.
DR. GREENBERG: [Comment off microphone.]
DR. CARTER-POKRAS: The biggest change is to allow people to mark more than once.
DR. MOR: That is what I am thinking about.
[Multiple discussions.]
I actually appreciate it and really thought that the data on the question order made a lot of sense. That was great. I liked that. But I just, you know, I am somewhat uncomfortable with check all that apply to --
DR. AMARO: What are we going to do with it was my question.
DR. MOR: Yes. Like, you know, so what? And I was like --
DR. CARTER-POKRAS: The surprise is that people have been doing this even when they have been told to mark only one. Around 1 percent have been checking more than one even with those instructions. That was a surprise to us.
DR. GREENBERG: Are you more comfortable than you would be if they had recommended a multiracial category?
DR. MOR: Much more comfortable than with a multiracial -- multiracial is just, you know --
DR. GREENBERG: Well, that is, I think -- that is how I think a lot of people felt, that this was a good compromise.
DR. IEZZONI: I actually think it is a very reasonable compromise.
DR. MOR: I do, too.
DR. IEZZONI: I am quite comfortable with it.
DR. CARTER-POKRAS: We won't know what the implications of the teams are until the changes -- we start to make the changes. There will be a work group that is going to be convening fairly soon that the Bureau of Labor Statistics is going to be chairing and they are going to look at different permutations, combinations that you can use at this check all that apply to see how we actually present that information.
MS. GOLDEN: I think Hortensia's comment probably needs to go forward -- and that is to make sure that some of this is really evaluated in a health context. Again, as I was saying, it is one thing to enumerate a population and to report on it demographically. It is another thing to use that variable as a part of an analytical construct as we do in a health audit and maybe some of the editing that is ultimately going to be worked out really needs to be looked at in terms of what we may have already seen from a health data analysis or at least it needs to be evaluated in that context.
There is a big difference in the methodology for using the information that is selected and in terms of how we edit it and code it. That is really going to be where we have a real problem, both for continuity and for comparability. If we continue, for example, putting -- using the first listed, making some assumption that people will sometimes list more than one race, have some order, to which they list it and some consistent order, if coding were to change and come up with some other methodology, you still don't have continuity with previous data analysis because it is lost in the coding process.
DR. AMARO: Has there been any discussion on how this is going to be handled in analysis for the health data systems?
MS. GOLDEN: We don't intend, I don't think, to interpret that to mean that we are going to use that as a reporting variable. I don't think we are required to use that as a tabulating variable. We are required to report methodology -- at least we are trying to assume -- and that is going to be NCHS's question, if reporting the number who give us a multiracial designation in a methodological -- in our technical appendix will satisfy what the OMB directive says as opposed to using it in a table.
DR. MOR: But otherwise in a table would it add up to more than a hundred percent?
MS. GOLDEN: These are issues that we -- well, NCHS will be raising these kinds of issues when it comments.
DR. CARTER-POKRAS: But the work group is going to be grappling with these issues. They started taking a stab at this. If you look at the chapter on multiracial, there are, I think, four different approaches that they took a look at. They said all inclusive is one of them and then they called it -- EEO edit, I think was how they called another one that they were suggesting might be useful for civil rights monitoring and enforcement, but they looked at several different approaches, four different approaches, to try to get a little bit at how you could present that information on marking more than one.
Actually, there have been other organizations that have used check all that apply data and we need to look at them also to see how they have used that information. The Federal Government is a little behind as far as grappling with this particular issue.
MS. GOLDEN: The denominator that we get from Census, of course, will be an issue and what Census does and how they put together the data and how we use it, these, again, will be the questions that we will be raising either for commentary or clarification when NCHS develops its response to OMB.
DR. AMARO: I think those are the most -- sort of the biggest changes. All the other ones have to do with sort of including a number of different alternatives for what term we use to refer to different groups and sort of adding on to the list so more people feel included and don't check "other" and there were some decisions made around -- well, we talked about the Middle Eastern, also the Cape Verdian(?), not including them at this time, although leaving it open for states to provide that detail if they have the populations.
[Multiple discussions.]
DR. MOR: We are the epicenter, as it were.
DR. IEZZONI: Okay. Hortensia and Olivia, you are going to be gone the whole month of August and the letter is due September 8th.
DR. AMARO: We will work it out. I may be available -- you know, we may be able to fax or Federal Express things to each other, but I would prefer to at least get, you know, some of the major stuff down before --
DR. CARTER-POKRAS: We need to get something out so the members have something to comment on. Sometimes that is easier to kind of formulate what you -- the comments you want to make when you have got something on paper.
DR. IEZZONI: Keep in mind, this letter has to come from the full committee, not the subcommittee. So, this expands. I would suggest actually, given that we have this timing situation, that you not go through an initial screen of what does the subcommittee think, but that you go to the full committee with the first round. Okay? And we will give our comments --
DR. GREENBERG: The only thing is, I think, the full committee would be looking to the subcommittee to have given it the most attention. We did send it to everybody.
DR. IEZZONI: Right. I mean, I am certainly around and I am happy to help, but I just -- you know, and maybe a number of us are, but I am just very concerned about the timing here.
DR. AMARO: I would think the full committee would feel more comfortable if it felt that we had looked at it closely and it sort of had the stamp of approval and --
DR. IEZZONI: Well, okay. Who is on vacation? When are people on vacation on the subcommittee?
DR. MOR: I am around.
DR. IEZZONI: You are around the whole summer.
All right. So, if we can have something the first week in August, by the first week in August, and then, Olivia, will you be kind of deputized by Hortensia to take that and revise it and then submit it to the full committee?
DR. MOR: Hortensia, can you give us an idea of like what is the bottom line of the comments going to be?
DR. AMARO: Oh, well, we need to discuss it. I feel that the recommendations are very reasonable. I think that there are areas to suggest where further research is needed and also specifically looking at the implications of how we are going to handle things, like the multiple -- you know, in health data. I think that is the most important one for us that I can think of right now, in terms of the implications, how we are going to handle it in the different health related data system in terms of analysis and reporting.
DR. GREENBERG: You might even want to say -- I mean, cc the letter -- well, you would anyway cc the letter to the data consult chairs because they are the ones who really report to, although it is perfectly appropriate to send this directly to OMB, and suggest that the committee or this -- who of this subcommittee would like to be involved as decisions are made about how -- you know, how the issue is dealt with.
DR. IEZZONI: Olivia, can I just ask, is this consistent with where David Williams was taking the minority subcommittee in his prior work on this issue? Because I know that David --
DR. CARTER-POKRAS: Right. As far as developing a response definitely. As far as the specific comments, I would have to go back and look at the earlier comments to see if the recommendations are in opposition to the recommendations.
DR. IEZZONI: Because I think that we should at least be aware of what NCVHS said previously because if we do have any significant change --
DR. CARTER-POKRAS: They definitely suggested against having stand-alone multiracial category. That I remember.
DR. GREENBERG: The main concern was about that, I think. I don't know that they were real definitive on other things, but I know there was real concern about -- we can pull that letter, but I know that was the main concern.
DR. AMARO: I really can't think of any other one that is going to have as much consequence as that one. I think that is really the biggest one.
DR. CARTER-POKRAS: As far as the Department is concerned, about half of our data systems use a single question for race and ethnicity and half of them use two separate questions. So, that will be a major change if we have to go to two separate questions.
I think most of NCHS uses two separate questions, but that is not the case for the rest of the Department.
[Multiple discussions.]
MS. GOLDEN: My question about the one question, Hortensia and Olivia, has to do with then what would be suggesting with respect to the subpopulations?
DR. CARTER-POKRAS: Well, actually, that is -- we can make a stronger recommendation because what is in the back there recommends that subpopulation data be collected and we can reinforce previous memos that the National Committee sent to the Secretary recommending that subpopulation data be collected. So, that could be part
of --
DR. MOR: In making any recommendations about collecting subpopulation data, it is really imperative that that data be collected imbedded within the appropriate context so that it does not affect the distribution of responses to those first two questions because it is very easy to affect the distribution of responses to those questions, based on the context as the data show about question order.
MS. GOLDEN: That is understood but, again -- and maybe that is additional wording that needs to be there, but the problem is on the one hand we are pushing and everything we are saying is to get more subpopulation data. If you encourage the collection of it in the single format, you have done nothing to really beef up the issue of the subpopulation data.
DR. MOR: When we were in California, we heard testimony of the enormously long list of racial and ethnic groups that the various municipalities are grappling and coping with and, you know, it is like in Miami, it is this huge, big, long laundry list and self-identification is fine, but no one is understanding what the implications of being in one class versus another class versus another class is when they just check these things. And it is not understood what the implications of that are for being able to collapse back, whether you can ultimately collapse those more detailed lists back into the reduced form.
DR. AMARO: I hear what you are saying and I agree with it. So, I think we just need to bring attention to that.
DR. IEZZONI: Okay. Dr. Sondik is coming. He is stuck in traffic. So, why don't we just all stay around in the room but -- why don't we take a little stretch here.
[Brief recess.]
DR. IEZZONI: All right. We are going to reconvene.
Dr. Sondik has come out of the terrible traffic that we understand you were stuck in
DR. SONDIK: Jennifer tells me they are digging up the city everywhere.
[Multiple discussions.]
DR. IEZZONI: Welcome. You and Hortensia have been having a kind of interesting dialogue, the two of you.
Hortensia, would you care to frame what some of the issues are that you and Dr. Sondik have been talking about?
DR. AMARO: Okay. Well, I think that the issues we have been talking about have a long history. They have been discussed by previous people before us, right, in many committees throughout the years, but most recently at the Hispanic -- what was it called -- the Hispanic Review of Healthy People 2000.
There were a number of individuals who were brought together to comment on where we were at and how we were moving along and the indicators of progress. Also, there was a meeting to look at the NHANES and other meetings that have come -- I think the Internal Data Working Group has been discussing these issues for awhile -- around -- and I guess the major issue we discussed was what steps can be taken to improve the type of data and the amount of data that we currently have on different racial and ethnic groups, especially the ones for whom our traditional sampling approaches don't work very well because they are concentrated in certain geographic areas and our normal sampling methods just aren't going to get to them. Oversampling is going to be way too expensive.
So, to try to think creatively about how do we address that -- and for many years there have been suggestions like, well, we should do specialized studies or different things have been mentioned, but nothing has ever moved, I guess, much beyond that.
Dr. Sondik has, I think, really been thinking about this with Jennifer and other staff and I think has some good ideas and suggestions about how to move it forward, which is pretty exciting. I think that that is what we were going to talk mostly about today, right? Focus on that.
There are other methodological issues, but we thought this is such an important one that really deserves major focus and that we would limit the discussion to that.
DR. SONDIK: Well, this is a challenge and it is one that I see, in effect, I would think practically every week and the challenge is for us to get an adequate, sufficient amount of information on the various subpopulations in the country that -- a sufficient amount so that we can deal adequately with the health issues of those populations.
I am not exaggerating by saying something comes up every week with respect to a particular -- one particular subpopulation or another and we face a real challenge in being able to use our resources in the most efficient manner possible to get information on these populations. The Hispanic Healthy People review was particularly memorable because it really honed in on this issue and I would say the -- it was the principal issue discussed during the review.
While there was information on some -- on the -- and I underline "the" Hispanic population in the country, it really was not broken down, except for, perhaps, one measure, as I recall, by specific -- any specific subpopulations. And the committee that has been called together, non-Department people, I think all non-federal people for that matter, were quite vocal in saying that we appreciate seeing some of this data, but some of it is ten years old, 15 years old.
It is interesting that there is data from the Hispanic HANES, but that goes back to the early eighties and we haven't seen anything since then. Several people brought up the lack of information on the Puerto Rican population, both in Puerto Rico and in this country. And when we -- it may have been me or someone else pointed out that our plans for HANES included some oversampling of Mexican Americans, this was not exactly greeted with a chorus of huzzahs that you had really found it at this point.
It was that there are lots and lots of needs. At the Data Council, the representative from the Indian Health Service, Tony DeAngelo, often makes it clear that there is not sufficient -- there is not a sufficient amount of information on the various tribes and perhaps the -- within the category of tribes, the various geographical locations, to adequately deal with their health problems.
We actually have met a couple of times now with the Indian Health Service, with the goal being to find a strategy where we can help to collect this information or at least catalyze the information and find out -- try to arrive at some ways where we can at least assist, if not go further than that, in getting the needed information on the tribes. In fact, they point to a book called The Gold Book, which actually is nearing its -- I am not sure anyone here is familiar with this, but it is nearing its 50th anniversary as being the -- Olivia, I am not overstating this, I think. You are probably familiar with this -- as being the principal document that gives information on the tribes.
There is other information but sort of the compendium of information is now that old. So, we have decided to focus efforts on taking a very hard look at the health of the American Indian, taking this document as at least the baseline, if you will.
We have some thoughts within NCHS as how we can meet some of these needs, but to tell you where I am coming from and I think where some others are coming from, I think we need some guidance to the Department on how we can meet the challenge, a departmental strategy, if you will, something where the Data Council, for example, knows when we are going to be getting particular types of information on particular populations.
These events are scheduled and planned for and budgeted for several years ahead. As it is now, most of these efforts are up to the individual agencies and in some sense I think that that is highly appropriate. We all have our budgets and we have difficult decisions to make within those budgets and I think we have to make those decisions. But I think there are some cross-cutting events, some of the surveys, for example, that deal with issues related to Healthy People, like the prevention surveys, the prevention supplements, to the Health Interview Survey, which deserve contributions from across the Department in terms of budget.
So, let me give you a couple of things we have been thinking about in terms of NHANES. Not only were we -- well, our original plans were to oversample, but having thought about these issues, we have another couple of strategies. One is we have been very strongly considering taking one stand from NHANES each year, which means one of the areas in which we do our sampling -- there are 15 of these -- taking one and in a sense floating it and using that one to address the problems of specific populations in whatever area of the country seems to be appropriate.
In particular, we are thinking about doing that for the Puerto Rican -- for the next year or two for the Puerto Rican population in the New York area.
Secondly, there is a proposal that was offered several years ago by the HANES staff, which has a tremendous amount of appeal. This is called the HANES RV, for HANES Recreational Vehicle. It fits right into HANES IV, for HANES 4 -- I always get a little chuckle whenever I say it but I think I am the only one. Isn't that true? I am the only one.
This is really quite a very nice concept because, as you know now, for -- to conduct HANES, it takes a couple of sets of four trailer trucks each that travel around the country and that enables us to get an enormous amount of information on those populations that we visit, but it really kind of logistically hamstrings us in terms of getting populations that are more diverse in other areas of the country, areas that are perhaps more difficult to visit.
So, this proposal was offered several years go when it seemed as if there was not going to be sufficient funds to do the full blown HANES and we have resurrected now and we are looking very carefully at the cost of it and seeing how we can build it into the HANES plans as an adjunct to HANES that would enable us not only to do HANES as we outlined it, but to enable us to deal with the special needs of special populations wherever they are. Whether it is taken an excursion into northern Minnesota in the winter, which we don't do with the trailers or it is visiting an Indian tribe in Arizona or wherever it might be, this would greatly increase our flexibility and enable us to get the objective measurements that HANES -- that are really the hallmark of HANES.
So, those are a couple of strategies for us. We oversample in the Health Interview Survey, but not -- we don't go after specific subpopulations on a regular basis. I don't know of any effort we have that is dealing with the Asian population, but correct me if I am wrong. Although we may get sufficient samples in some areas of the country, like in the L.A. area, to tell us something about that. But it is going to be relatively small.
So, the problem that really I guess I am putting in front of you, Hortensia is putting in front of you, is that we in general have a limited set of resources, but it is clear that we need to get information on these populations. Now, when I say "we," I mean, I think we need this information from the -- in some fashion, whether it is from the Federal Government, whether it is some manner that foundations are involved, whether it is some way that the private sector is involved and there is federal involvement in that, we need some way of doing this.
As it stands, I think there really are very significant data gaps and I think your advice to the committee and then to the Department in how we should deal with this, I think, would really be very useful. And I underscore what we have talked about a few times in the Data Council is the need for a strategy, a plan for this, I think would really be useful.
Olivia may have some comments or Pat.
DR. CARTER-POKRAS: We have a little success story. We have managed to develop an inclusion policy that we are trying to get cleared within the Department for racial and ethnic data within the data systems. So, we are hoping that once this gets approved that this will move that forward because a surprising number of our data systems don't have complete information on the racial and ethnic identification of people participating, say, in a particular program.
MS. WARD: Can you be more clear about what that will look like if you get approval, just to be a little bit more specific?
DR. CARTER-POKRAS: It will say that all the data systems within the Department have to collect racial/ethnic data unless they have a good rationale not to. An example would be, for instance, the patient registration files that the Indian Health Service has because they prefer to collect information on the people they serve, which would be Indians and members of federally-recognized tribes.
So, they have information, say, on a particular tribe, the tribe that they are a member of, whereas, they wouldn't have the full-blown categories within OMB Directive 15 or whatever the successor is to that.
MS. GOLDEN: That is an example of an exclusion.
DR. CARTER-POKRAS: That is an example of an exclusion, right.
MS. WARD: Your policy would change --
DR. CARTER-POKRAS: No, we would not require the Indian Health Service --
[Multiple discussions.]
That would be an example of a rationale or their justification for not collecting racial and ethnic data from everybody within their data system. But we would expect that the data systems right now are not will have to come up either with a very good rationale why not or they will have to start collecting that information.
MS. WARD: Do you have a sense of what the percentage is of programs who currently don't who would now have --
DR. CARTER-POKRAS: We don't have an exact number but a few years ago I had to collect some information on a like a 24 hour basis for one of the congressmen who was asking a question on that very thing. I found to my surprise it was something like a third of the data systems that I called up either did not collect it at all or did not collect it on everybody and I called about 15 or 18 data systems in that 24 hour period.
DR. IEZZONI: George or Elizabeth, coming from states where you often have articulated that you need to know more detailed information about the health of populations than might be available through something like the NHIS or NHANES, do you have any suggestions or thoughts about --
MR. VAN AMBURG: It is an intriguing option because, you know, there are some pockets of unique populations. We have a Middle Eastern population, of course, in Michigan that we don't get good data and we would love to have this selecting around to do that. That would be a really great way of doing that.
MS. MADANS: A similar approach could be used on HIS as well. I mean, as Ed said, HIS is large enough that without -- there is oversampling on HIS, but you get a fairly large proportion if you put two or three years together. But one could take some of the sample size and some proportion -- we don't know what that would be -- and say, well, this year we will do a special study. And it wouldn't be part of the national database, but it would be somewhat special.
There is also our telephone survey that we are developing and I think the committee has heard about which would give us, hopefully this is operational, many HIS's on all 50 states and as many local areas as we could afford.
I think this is kind of a generalized approach to get information on population groups, as Hortensia said, that we don't normally get, which would be states and local areas.
DR. IEZZONI: Is there a possibility of a state/federal partnership, though, on some of this? I mean, could some of the -- have any states taken -- I guess, New York, you said you were going to be doing something special on Puerto Ricans in New York City.
DR. SONDIK: That is what we are planning on doing.
DR. IEZZONI: Is New York City helping to fund that or --
PARTICIPANT: No, but it is a good idea.
DR. SONDIK: Why don't you discuss some of the arrangements and --
MS. MADANS: Most of the interactions we have had at the state and local level has been with the telephone survey and we have done some things in California. We just spoke with them last week about doing an expanded HIS in California. The state and local area integrated telephone survey, which is SLAITS, was really designed to get information on health care reform and welfare reform at the state and local level. It is a federal survey, but we would like to have as much usefulness at the state level. So, we are starting small. I mean, all of these things are starting small and it is very different than the way we have done things in the past. We are not going to 50 states.
We hope to collect data in about five or six states but we were talking about 14 states and working with them to develop a questionnaire. Most of the questionnaire we would like to have as standards, a phone survey and it is added on to the immunization surveys. We are already asking 20 minutes of questions on immunization status. We can talk more about that survey, if you would like.
We want to give states the option of adding on maybe five minutes of questions and also changing the sample design. Our funds pretty much will allow us to do a straight sample of about a thousand in every area. But we could change that sampling strategy. Especially in the area of welfare reform, we really want to oversample low income. A state may want to oversample a particular county and then there are a variety of different ways of cutting up that pie.
So, we are working with the state representatives to do that. Really very informal at this point and ad hoc because there is really not a whole lot of money. It was funded primarily by ASPI last year. But we have talked to
CSDE(?) and various groups about our plans for state and local area data collection. The flexibility in that is that you can add on to HIS. You can do something different, but you can have multiple surveys going on in the same area because we have a very large telephone frame.
So, if you wanted to, you could have four or five -- and get the money, you could have four or five surveys going on. Because of the survey integration that the Department has, a lot of the questions kind of follow through from HIS, SLAITS, HANES and the Medical Expenditure Panel. So, there are these connections among all of the surveys and we are also doing some statistical matching to SIP and CPS so that we can get all of the -- try to make -- do some matching, do some modeling.
DR. AMARO: I think that these ideas are a really good compromise between, you know, probably the ideal of what some people would like to see, but it is too expensive, which is, you know, the oversampling or yearly studies on these different subpopulations, which just wouldn't be feasible, but it would provide some data that could be gathered on some kind of interim basis on different populations that would be more regional in nature, especially for groups that are not distributed, you know, equally across the country so it would be consistent with the goals of providing more local data that health departments could use.
So, I think it is -- you know, it is a nice compromise of some of the strategies we started talking about and versus not doing anything. I think it is a reasonable approach.
MS. MADANS: I think we want to imbed all this within the national data collection so that you have the comparability with the national data as opposed to really special studies, which would go off on their own. You want to make this somehow part of the whole overall structure so that it kinds of fits in without making it all one survey.
I think in the past we have tried to do that so that everybody would be included in the national sample and, you know, you lose by doing that, I think.
DR. SONDIK: Let me mention something about the Hispanic review that I found useful. I guess you all know about Healthy People and it covers a variety of objectives from different aspects of health outcomes and services and behaviors and the measures come from a variety of different surveys or activities and not solely from NCHS by any means.
I found it actually quite useful to have this session in which we were dealing with not, for example, well, what do we get from NHANES for a particular population, but dealing more with the needs of the population on a broader basis and having people who could speak to the different aspects of that in the same room. In other words, focused more on need than on particular mechanism for collecting the information.
It seems to me that in carefully looking at what came out of that, that ought to give us some ideas about how the different agencies can work together in collecting some of this information. So, for example, before we march off and look at the Puerto Rican population in New York, we ought to be looking with SAMHSA, at what SAMHSA has on that population, what they want, you know, what they need and seeing how we can join forces in a federal-federal relationship, let alone a federal-state or federal-state-local partnership.
Sometimes I think we tend to look at these things mechanistically. What can we get from a particular mechanism about a particular population instead of thinking more broadly about the health needs of the population across the board. So, I found it actually -- you know, I have brought it up many times, but I really found it extremely useful because it highlighted for me -- to me, the importance of looking at the needs of the population across the board and at the same time taking a hard look at what it is we do have and how hold it is and how current it is and think about how we can build this in more into what it is we are doing.
There are many, though, as we are all aware, of subpopulations, if you will, small populations in this country, that have these needs and sometimes, you know, we only know about them, I think, when a particular crisis arises or when that population takes some actions for its voice to be heard.
I guess there is some merit in working that way, but I think we also do want to know what it is we have on which population at which point in time. I say that particularly with my other hat, which is the advisor to the Secretary on health statistics. I think it is important we have a sense of what it is we are going to be getting when from which group in this country.
The groups, by the way, don't have to be racial or ethnic groups, obviously. You know, there are very significant issues about what we know about SES groups, issues about relationships between SES and access, relationship between that and managed care or the changes in the health care system. I see these are all part of, you know, if you will, an agenda that we need to follow up on.
DR. MOR: I was going to sort of hold off for awhile and as soon as you said "managed care" and the context, it sort of raised a whole series of issues for me. Fundamentally, though, if one assumes that geographically concentrated subgroups of the population have different health experiences than others and that sometimes the geographic concentrated groups are relatively small would thereby be missed by normal sampling, even oversampling, like NHANES or HIS, that really does a number of things. One, it calls into question the current two-stage HIS sampling strategy, which is geographically based.
Secondly, the same thing with managed care, since many of the phenomenon of interest occur at different rates in geographically concentrated areas. The sensitivity of any effort to look at what is going on is going to be quite geographically sensitive to the choices of locations, which sort of drives you right away to some kind of population data collection and up and above to sort of, you know, very clever notions of rotating options, as well as the state thing.
But is there any notion that it is possible to add items on a census basis that might pertain to health and/or experience of disability, which at one point then could be crosswalked to more detailed information so that one could actually do a micro-macro extrapolation where you really do have a full denominator that you can then begin to do some calibration on.
MS. MADANS: Are you talking about the census?
DR. SONDIK: I wondered if this new survey that the census is proposing, the --
MS. MADANS: The American Community Survey.
DR. SONDIK: Yes, I was going to say American Family Survey, but that is something I received in the mail the other day I threw out, I think.
MS. MADANS: You could have been the million dollar winner. We need the money.
DR. SONDIK: I think that was it.
DR. MOR: What about the American Community Survey or is that not going to be detailed enough?
MS. MADANS: Well, I think it is really a question of content on any of those. I thought the American Community Survey was going to pretty much be the long form, but I can be wrong. And they are fighting terribly over what is going to be on the long form. They, in fact -- Michelle isn't here, but the last couple of weeks they have been -- there has been a lot of negotiation with Census about what the disability questions are going to be and I think they have come up with a whole new set.
DR. MOR: A whole new set that hasn't been tested?
MS. MADANS: They are going to test --
DR. IEZZONI: That is what we hear about in September at our breakout session.
MS. MADANS: There are six -- the last I saw of this -- I mean, there was this whole -- I don't know how much you have talked about this, but the Census didn't want to ask any ADL/IADLs and that caused a fury. There were little furies going on all last week.
So, I don't know. I mean, I think that it would be wonderful if they had something that was useful, but they tend not to follow the Department too closely, our department, in what they want to do.
Now, maybe with the American Community Survey, we have some input in with -- that would be close enough to, I think, a census.
DR. MOR: Right, because the point is that if there are a few items, many of those items are actually correlated with a lot of other more detailed items that are standardly obtained.
MS. MADANS: I think there were six. I mean, I could send you the six they are looking at. I think it was -- there was an ADL and IADL, getting around, shopping, going to the doctor and a work disability -- there were six. It actually looked much better than the ones that they had before.
If they get the data sharing bill passed, then we could actually use the American Community Survey as a sampling frame for the HIS, which would take us pretty far into identifying some of these population groups of interest.
DR. SONDIK: In fact, I think there is a hearing next week on data sharing.
MS. MADANS: Because right now we can't use this.
DR. SONDIK: So, that is a possibility. From your more theoretical construct, I think it really is a possibility. There is another activity that is perhaps not quite along the same line that is taking place in the Department, where there is an effort to look at these -- how the health care delivery has been transferred and to see what its implications are in significant part for our health care surveys and the other related types of activities that go on in the Department. Because the frames that we are using are really structured more on the basis of the facilities than they are on the basis of things like, for example, the financial arrangements.
So, it is conceivable that in coming up with that framework, we will be able to a priori get -- be able to identify some of these populations.
But I am -- when I mentioned before other populations on a -- subpopulations on a geographic basis or SES, I am actually getting at that type of thing. I think there are lots of different populations in this country, perhaps even more so than we have been studying in the past because of these care arrangements and since in significant part, the work we do serves health services research, I think we have to understand how to collect our information in such a way that we really can be supportive of that research.
I think that is an open question as to how best for us to do that. Maybe the strategy you are getting at, linking this to something that -- a measure that is in the census and then linking that to the other data that we have or the American Community Survey, even better, I think, would enable us to do that.
But that is -- well, I guess, it is not that far down the road. The census is, but the American Community Survey is --
MS. MADANS: That is after the census.
DR. SONDIK: Oh, it is after. I thought they were going to begin it before.
MS. MADANS: I thought it was 2005.
DR. SONDIK: I thought it was much earlier than that.
DR. MOR: Because there are also some technical issues about the sampling frame and the sampling theory. If you really do believe that things are as geographically heterogeneous and/or nested, then it seems imperative to collect and be able to assemble information that can be aggregated up or somehow or another those individual representations of the people who respond to surveys can be hooked and nested automatically to their local area, to their market, to some other characteristics.
DR. SONDIK: I think one of the areas in long term trends, in terms of long term trends in which we are going is that I expect that we will have a great deal of information from these various health care systems, administrative information. I think some of the things that we are now doing through national surveys, we will be able to do through a build up of this from the local -- if you will, the local areas. But we really need to understand the characteristics of that information, the quality of it, appropriate weights and all of that type of thing.
I see that it is down the road, but I think it is a -- I am quite confident that we will see that within the decade for some measures of information.
DR. MOR: Just one last question. I don't remember what the current status of the ability to generate information about the -- and to have available for examination and analysis, information about the environment in which an individual respondent is. Is that going to be available as part of the files, do you know?
Linked to, like, you know, the link of somebody's part of this --
MS. MADANS: Contextual data.
DR. MOR: Contextual data. That is the right word. I am sorry about that.
MS. MADANS: Well, we have a plan. I mean, I know you know that our problem with contextual data is the confidentiality problem and that putting on very limited amount of contextual data allows you to identify the area, which given the amount of information we have on our sample people, for a reasonable subset of the sample, you could probably identify individuals and that is against our confidentiality law.
So, what we are trying to do is make the data available to researchers without actually releasing the data. Smoke and mirrors. There are a couple of ways of doing that. The long term goal is to develop an automated system whereby we would provide not the real data but a test data set, which looks like the real data for you to develop your analysis on.
Then we would have the dedicated computer, where you could submit your programs to run on that computer and there would be an automated testing of the program and the output to make sure that you weren't getting confidential data. And it would all be done automated, so it would be fast. You could run things in batch. Nobody would ever see it. And we are developing or trying to develop that system. So, you would have a certain data set to work on on site, but then the actual complete data file with all the added on data would be in a secure place and you couldn't get listings, things like that.
One step back from that is to actually have somebody look at it. You would still do the same thing, but rather than having it being automated, you would look at it. We are actually doing that. We have a pilot project now at the NSFG with trained people in Atlanta. They are not -- I mean, not Atlanta, in RTP. They are actually running the program and then sending the results back.
We are trying to set up data centers. We would start with one at NCHS so people could come in and work at. This is similar to the census data centers, but we could have them in different places.
If we had the same data sharing bill, that would allow us to share data with the other statistical agencies, would allow us to have sworn agents. We do not have sworn agents now, like the Census Bureau has sworn agents. So, there is no way for us to have a contractual relationship with a researcher. Census has sworn agents. If we had sworn agents, we could make more data available.
We will make limited amounts of contextual data available, but very soon we run out of what we can make available. So, there is this kind of range of options that we are developing to make the maximum amount of data available to the researcher without actually putting out a public use data tape that has the individual -- all the individual data and 3,000 census track level variables for that person.
It is not the best. It is not what people want. We are also trying to set up some fellowship programs so that we can encourage folks to come for a year. We are starting something we hope this year with the American Statistical Association to have an ASA fellow. They would be not NCHS's employees but would have the right kind of contractual relationship and would have access to confidential data.
DR. SONDIK: We do have some state files that we have put out on CD ROM that are HIS data and they have been slightly corrupted by noise, so that you get the right marginals, but the data is protected to -- corrupted to protect the innocent in this case.
So, we are working on that type of thing.
MS. MADANS: The 1995 HIS is a much nicer -- it is a state friendly design. It is in every state and there are at least two SPSUs in every state. So, we will be able to put more information out at the state level. The state files that Ed is talking about are on the old design. So, they are even more limited. They are top coded.
It is one step. If we can deal with the dual frame HIS and the SLAITS, we can -- and actually draw samples within the state and within counties, as long as the sample is large enough and the county you are taking it from is large enough, we can put out county level files.
The problem now is that either the counties are too small or the samples are too small and you can't make estimates anyway. So, then, you have to actually provide the contextual -- the linkage information on the file and that just links you to everything.
The answer to all our problems is triple the size of the HIS and triple the size of HANES.
DR. AMARO: I guess that I wanted to sort of go back to a comment you made when you started around guidance to the Department on how we can meet the challenge of starting to integrate these strategies into a broader effort. As you go forward with this, I guess my question is are there ways of working with the committee that would be helpful to you in moving forward. Are there specific things that you think we should be looking at to support this effort in a broader level?
DR. SONDIK: Well, what I was hoping was that the committee would consider the extent of these problems, the extent of the gaps in some of these areas and consider whether it wants to make a recommendation to the Department on ways in which these gaps can be addressed. I guess I always go back to a framework in which I try to think of some -- what I think the critical questions are for the particular population and ask whether we have sufficient information to answer those questions.
So, in a sense I am -- I guess I am positing before you as to whether you wish -- you would want to take this particular topic on as something in which you would want to give the Department some guidance, how to deal with these issues related to specific subpopulations.
DR. IEZZONI: We are hoping to have some new members, who will hopefully help us think about that as well as some of the members of this subcommittee. We are specifically hoping that the Secretary might appoint somebody, for example, who is an expert in survey design, you know. And, so, I think that -- let us keep that as something that we will be hoping to help you with and make a specific plan for how that might work once we get our new members appointed, which will, hopefully, be soon?
DR. GREENBERG: Hopefully by the September meeting.
DR. IEZZONI: Hopefully by the September meeting.
DR. AMARO: I should say that in our subcommittee charge and work plan that is definitely Item No. 5.
DR. IEZZONI: That is not in order of importance.
DR. AMARO: No, it is not, no. But it is within our broad charge and work plan, working on this, as well as other issues related to methods that we have talked about before.
DR. SONDIK: I would imagine this and related topics are going to be coming up quite a bit with the Data Council and what we at NCHS would be happy to do is to keep you apprised of whatever developments we have in this area. Certainly, as our efforts with the Indian Health Service move along, we will keep you up on that.
DR. IEZZONI: I think that would be great, Dr. Sondik. We are very fortunate to have Hortensia on the subcommittee, who brought this issue to our attention, but some of the rest of us do not track these issues and, so, are unaware of them and, therefore, unable to help you. It sounds like Vince might be a ringer, too, from the nature of his questions in terms of being a user of the data sets.
DR. MOR: Yes, I use these data sets a lot.
DR. IEZZONI: So, I think that that would be helpful if we could --
DR. SONDIK: Okay.
DR. AMARO: Also, that if you are holding any meetings -- I don't know if there is going to be a follow-up to the NHANES to discuss these issues more, but if there are, that we can certainly have some kind of, you know, some kind of crossover between the two groups.
DR. SONDIK: Okay.
DR. AMARO: I just wanted to say that we are just getting started with our work plan, so I think people are feeling pretty overwhelmed with the work we decided this morning we are going to take on. So, you know, you are getting some of that, but that it is definitely within our work plan. It is a priority. We are really hoping that when the new members come with specific expertise in that, that there will be, you know, two or three of us who could work really closely with you. This is definitely an area of interest to us and it is within our work plan.
MS. MADANS: I think the other is publication dissemination. There is a lot of data that we, obviously, can't analyze everything and then people don't know we have and so in areas that you can -- say if you publish this or made this known, that this might be useful to the user public --
DR. IEZZONI: One of the things that I am hearing is that people are able to take, I guess, the Medical Expenditure Panel data right off the AHCPR Web site. Is that something that people have heard of? I had a colleague at the School of Public Health who was telling me about that. Because he was going to be using it to create an analytic file.
MS. MADANS: I know they put out a CD ROM, but it is awfully hard to do that.
DR. SONDIK: We are experimenting with a number of different ways to actually get data off of the Web. There are two principal areas. One is in Canada that is being used and we are -- which I understand is really quite good, but I haven't seen that one. There is another one that the Census has developed and we have an experimental setup in which we have HIS data that you can address with this system. The system is called Ferret(?), highly appropriate, and it is quite easy to use and allows you to get fairly detailed data, not so detailed that you violate confidentiality, but it really is a major goal of mine to make the data as close to the user as absolutely possible.
But what is interesting is that when you start to get close, then you get into the points that Jennifer was raising before and you start doing things that are really a lot more -- seem to be a lot more complicated, like corrupting it by noise or -- which is actually a very -- I think is really quite a good strategy, or get into this business of actually allowing people to use what amounts to a toy data set so that they can get a feeling for what is in that information and then submit their analyses and we will run them and review them.
Everything is straightforward except the review.
DR. IEZZONI: Right. Exactly. And it needs to be done like this.
Okay. Any further comments?
[There was no response.]
Should we adjourn for the day?
[Whereupon, at 4:37 p.m., the meeting was concluded.]