MEDICAID MANAGED CARE: WORK PLAN DEVELOPMENT AND PRESENTATIONS
PARTICIPANTS:
Subcommittee:
Lisa I. Iezzoni, M.D., M.S., Chair
Hortensia Amaro, Ph.D.
Richard K.
Harding, M.D.
George H. Van Amburg
M. Elizabeth Ward
Staff:
Carolyn M. Rimes, Key Staff
Olivia Carter-Pokras, Ph.D.
Patricia
Golden
Ronald Manderscheid, Ph.D.
Opening Remarks and Introduction - Dr. Iezzoni
Integrated Data Collection: Current Status, Gaps in the Collection Process and Recommendations - Mr. Hitchcock, Mr. Mendelson
Using NHIS to Monitor Access to Care for Vulnerable Populations - Dr. Cohen
Medicaid Managed Care - Ms. Rosenbaum
Performance Measures and Data Needed to Support Performance Measures - Mr. Koshel
Policy and Data Issues and Gaps: Balanced Budget Amendment, Medicaid Managed Care and Welfare Reform - Dr. Ku
SAMHSA: Project Overview, Ties to Core Data Sets and Existing Limitations - Dr. Buck
Encounter Data and Recommendations - Ms. Dodds
Medical Expenditure Panel Survey: Overview and Potential to Analyze Specific Population Subgroups - Dr. Banthin
DR. IEZZONI: I'd like to welcome folks to the meeting of the Subcommittee on Population-Specific Issues. Today we are going to hear from a number of researchers and other folks about health information systems to help us learn about Medicaid managed care.
I would like to start the meeting by just having us go around and introduce ourselves around the table. Then we would like hear from you all who are out in the audience.
[Introductions were made.]
DR. IEZZONI: Great. It's a wonderful variety of folks in the audience. At some point I'd like to find out why some of you are here.
The way I would like this morning to run is we are going hear some presentations that I guess you all have prepared for us. Then we will hopefully have some time for us to interact with you. I would also like to hear from members of the audience at some point, to get your input as well.
Basically, the goal of today is to figure out how our Subcommittee on Population-Specific Issues can help look at the concern around having adequate data to be able to evaluate the impact and operations of Medicaid managed care, as that significant change in the Medicaid program is promulgated throughout the country.
So the mission for today is for you to help us figure out where we can contribute. So hopefully there might be some members of the audience who might have some ideas and attitudes about that too.
So why don't we get started? Dale, you and Dan Mendelson have been listed as joined at the hip. Are you a tag team?
MR. HITCHCOCK: Let me just say a few things quickly, and then we'll let Danny do the presentation here. We are delighted that Danny is here this morning. Danny has been our principal person at the Lewin Group on this project. I'm the project officer here at HHS.
We were sort of added to the agenda at the last minute. We really can't meet all the promises of the agenda. We are not able to talk about caps in the data collection process, or to make recommendations.
What we are able to talk about is a project that we initiated a couple of years ago where we decided to develop a database, a multi-purpose resource of activities that states were engaged in, where they integrating and merging at least two or more data sets. It could be WIC and vital statistics. It could be Medicaid and something else.
What we really wanted to do was to create a snapshot of what data collection activities there were in each of the 50 states; where they were; what led to these activities; what were some of the learning experiences along the way; who in the states could be contacted to learn more about these various activities. And to put this resource up on the Web as something that states could use principally themselves to learn what was going on in their neighboring states.
We have had some conferences and some meetings with representatives from various states where someone in New Jersey, for instance, might have some idea of what was going in Utah, because they had a contact in Utah. They couldn't tell us or they didn't know themselves what was happening in their neighboring states of Delaware or Maryland, and so forth.
So we sort of saw this as a way that the department could contribute and share knowledge that was being accumulated within the states, as well as to inform ourselves as to what was going on out there.
So the Lewin Group put together for us the initial registry. It is out there on the Web, and Danny will be sharing the address with you for that. Recently we have awarded under task order, a new contract to Lewin to go through and update with each of the states, the activities that might fit the registry, and Danny can tell us more about definitions of what sort of activities we are looking for when we go to states and ask them to describe for us, some of their activities.
We do have information on each of the 50 states. It is really quite remarkable and a useful project. It is a tribute to Lewin's tenacity in working the project for us.
So Danny.
DR. IEZZONI: Can I just interrupt, and say I think this sounds very relevant to what we want to hear. So do not feel as if you are talking in vain.
MR. MENDELSON: Okay, I won't.
Without further ado, let me give the Internet address for the site, because I think if anything, that is probably the most relevant piece of information here. It is aspe.os.dhhs.gov\statereg. So it is accessible on the Internet, and really the goal of this project was to make information about integrated state health care databases really available to everyone, not only folks in state health policy and federal health policy, but also people who might be interested in these topics from the private sector.
The methodology was pretty simple really. We first ran pilots in about a dozen states to identify the universe of data integration activities. We visited six of the states, and did extensive interviews with a lot of folks.
I think it is worth saying that in any given state, in order to fully characterize the range of state health data integration activities you have to talk to anywhere between 6 and 20 people to find out what is going on. I think that that, in and of itself, is a little bit revealing.
Dr. Van Amburg was actually one of the people we interviewed for the present project, and his name is listed as a contact for one of the Michigan contacts. So he knows.
MR. VAN AMBURG: Obsolete already.
DR. IEZZONI: He's obsolete already. He has retired.
MR. MENDELSON: Well, hopefully that will come up in the update. It is will be a nice quality control measure.
After we were done with the site visits and the other case studies, we came up with a taxonomy to kind of characterize the range of state health data integration projects, and I will talk a little bit more about that a second.
Then we created a structured interview protocol, which we ran in all 50 states. Again, really the most difficult aspect of the project was identifying the right individuals in any given state who could actually talk about data integration.
The Web site itself has four sections, and the first talks a little bit about frequently asked questions, methodology, and who we are, who APSE is, kind of how we did the project. I think between Dale's description and my description you have a sense of what we did.
The second is our taxonomy. We basically divided the world into three categories. There is some considerable overlap, so I wouldn't want you to think that there isn't. The first is policy-oriented integration. Under that general heading there were three subcategories: decision support software, retrospective linkages, and data collection across providers.
Decision support software is when states are actually creating programs that will help support decision-making at the state level. I would like to draw a distinction between decision support software as it's commonly used, to help physicians make decisions like APACHE's methodologies and what not. It is not that. It is really focused on state providers.
In particular, there are some executive information systems, for example, the one that is currently being created by Georgia, that kind of characterize that. They are data systems that are intended to support state decision-making.
Retrospective linkages, what Dale mentioned in his introduction, looking back at databases, not really linking them on a going forward basis, but rather saying we have database A and database B, so let's put them together to try to do a study if you will, limited in that you don't get very current information, but much of what has actually been done in looking at Medicaid has actually been through retrospective linkages of various types.
Then finally, data collection across providers. This is hospital discharge databases and what not, where you are just looking across disparate providers and trying to pull all the data together.
The second general category of data integration is service delivery-oriented integration. Here we identify case management software, particularly in say the WIC program. Missouri's Mosaic system I think is an example of this. The second category is automated data sharing, where a computer system will simply populate fields from another program. If you have one beneficiary who is receiving services from multiple programs at the state level, gee, wouldn't it be nice if you didn't have to enter their name and address every single time they came for services. These systems simply automate data sharing between the different programs.
The third general area that is discussed in the taxonomy is integration support. Here it is a kind of a grab bag of all activities that support data integration, so that might be network infrastructure, building the network that is required to have a real time data system; development of standards in some states; electronic data interchange; then finally, the strategic and organizational planning that is often required to integrate databases across the different disparate parts of a state health organization. So this taxonomy is described in detail.
Let me address a little bit more specifically the purview of this committee, because the topic of Medicaid managed care really doesn't come up much in the present registry, and maybe that is an observation in and of itself that is important. There are a few state efforts that attempt to capture Medicaid data and enable analysis of Medicaid data relative to other state data.
For example, I mentioned the Mosaic system in Missouri. The idea there is to create a linkage between the Medicaid in some aspects, and other state health data. These examples are really pretty few and far between, and there are a couple of examples then of states that have planned to create data systems where Medicaid managed care data would be integrated with other state data, in particular MediCal.
So if you were able to do a text search, and hopefully in the coming version of the registry you will be able to do that, but if you search for Medicaid managed care integrated database, I think California is really the only state that is described in the registry.
There is a controlled search in the registry which will enable you to search on Medicaid. You will find a lot of retrospective linkage of Medicaid to other state health data, but really nothing on a going forward data. So there is really a poverty of data in this field, I think it's fair to say.
In addition, the states where we went, I did the interviews with the MediCal folks,a nd one of the things that they reported to us was that the systems requirements at HCFA really precluded them in a lot of ways from creating the kinds of management information systems that they would really need to do disease management in the context of Medicaid.
So there were a lot of feelings there that if the requirements were more flexible, then they could be creating systems that would be more useful. Now I think it's fair to say that the work that we did was current as of say the middle of last year. So that's old already.
We're hoping that in the update of the registry, which we have initiated, and will probably be complete in about four or five months, at least the first iteration, it could well identify new efforts. So I definitely commend the Web site to the committee, and also to others who are interested in this topic going forward, because it will be updated.
That is pretty much all I have prepared. I would be very happy to answer any questions or comments.
DR. IEZZONI: Great. That was fascinating to hear what you have all been doing.
George, do you have any comment, having been one of his subjects?
MR. VAN AMBURG: Well, it was an interesting process, because it really forced you to think about what you were doing with your databases, and what was really an ongoing process, compared to what was retrospective. I think that was a critical thing. I think Dan's point that most of the matches and cross links have been retrospective is probably right on the target.
I would be interested if you picked up any states that were ongoing on matching the Medicaid files with any of the chronic disease registries like cancer registries for evaluation? Are there some states doing that?
MR. MENDELSON: A number of states, and they are described in the registry. Missouri, for example, has the infrastructure in place to do that on a going forward basis. Georgia does it as well.
I think one of the problems is that in both of those cases when we were there some of the functionality was really planned, as opposed to real. I personally never saw a system that was fully capable -- as an analyst, to come in to say, okay, let's sort this by ICD-9, a let's see how patients are being cared for in the Medicaid program. Let's have the Medicaid linked with hospital discharge. It is just not there, but a number of states are moving in that direction.
MR. VAN AMBURG: Besides the barrier of different statutory restrictions on databases, what did you find were the real barriers of doing this ongoing linkage? I realize there are statutory restrictions.
MR. MENDELSON: The statutory restrictions are the ones where - - you hear that over and over again in speaking with the states, but there are certainly some others. We also, by the way, described a lot of the barriers to state data integration in a paper that we published in Health Affairs in the May/June issue. So that is there. It is not based entirely on the registry, but it is based in part on the registry.
Technically, it is very, very difficult to do, or maybe I shouldn't say very difficult, but states have not been able to do it. A lot of the systems, particularly the Medicaid systems, are really transactions-based systems. They are used for bill paying. They don't have the kind of functionality, even within the Medicaid program.
We were in New York interviewing the folks from Medicaid there, and even within the Medicaid program, forget Medicaid managed care, which is in some respect, kind of an additional layer of complexity, they were unable to run some of the simplest reports that you might want to run. They were conscious of that, and they had a big system migration plan, but it takes a lot of money and it takes a lot of time to create these systems. So that's one; it's kind of the money, time, resources issue.
A second issue that came up, which in some respects is maybe a little bit more subtle, but perhaps more pernicious is turf. Within any state, there are a variety of databases. Each one is owned by a champion, and it is sometimes very difficult to get those people to come together, particularly when there isn't a strong commissioner. I think that Michigan's reorganization is in some ways, emblematic of efforts to fix that kind of thing, but it is very, very difficult to do.
So I guess I would have those three. One would be statutory; the second would be resource; and third would be organizational are some of the impediments. They are described in more detail in our Health Affairs paper which was published last year -- actually early this year.
Other questions, comment?
DR. IEZZONI: Was Washington state --
MS. WARD: I don't think you interviewed Washington state.
MR. MENDELSON: We were. All 50 states are described in the registry, so there is a good probability that any given state would be in there.
DR. IEZZONI: Is it interesting that you weren't interviewed?
MR. MENDELSON: I can't remember. We could do a key word search.
MS. WARD: We traditionally fill out surveys and send them to Lewin on a regular basis.
MR. MENDELSON: I had occasion also to go to Washington state recently for another project that we did for ASPE on public health laboratories and the infrastructure therein. I interviewed a bunch of people, and there are actually some very interesting projects that are going on in Washington state.
Now Washington state had a whole data migration plan that was put in place in the context of health care reform, and Elizabeth was one of the key players in that. In fact, there were a couple of states that really did have very well thought out plans for how to create integrated data systems, which did not come to fruition because of either political constraints or resource constraints. So again, I think it's another example of why these systems haven't actually come to fruition.
MR. SCANLON: Danny, there was also a part of the inventory in the registry that asked about were there any initiatives the state was undertaking in terms of confidentiality or privacy in terms of sharing or protection. I don't know how many states actually indicated they were doing much, but that was another part of their query I think.
MR. MENDELSON: Right, and the answer is about half a dozen. They are described in the registry, and this was of particular interest. Bill Braithwaite has also been very involved in the registry and was interested in that. That's going to be something that we query on in our update as well.
The concern there was that as 50 states go off to try to struggle with the issues of data, confidentiality and security, and lack of a federal standard, what kind of system are you really creating there?
DR. IEZZONI: Well, we're going to fix that, aren't we?
MR. MENDELSON: Yes, rumor has it.
So Dale, they have been funded to do an update at this point.
MR. HITCHCOCK: We would love to come back and demo this for you at some time. The update will be finished sometime when our promised state-of-the-art conference rooms are finished.
DR. IEZZONI: You mean in the year 2003.
MR. HITCHCOCK: We would love to demo it for you. You get a better feeling of what is possible, and what the registry contains with a live demonstration.
DR. IEZZONI: That would be great. I think obviously the search capabilities would be one of the biggest things for us in thinking about how to utilize this.
George, I see you moving toward the mike.
MR. VAN AMBURG: I was going to ask if in this update you are going find out what states are doing for their Medicaid managed care data systems as compared with the fee-for-service, and how they are going to integrate those?
MR. MENDELSON: It hasn't been identified specifically as an issue, but it's something that we could add, and I would be very open to that. It would probably make it more useful to you and some other folks.
DR. IEZZONI: Well, I think it's a policy element. The reason that we are focusing on Medicaid managed care right now is it is important to many people in the country. So Dale, I don't know whether ASPE would support adding that as a question, but I think it would be --
MR. HITCHCOCK: It's all done informally, Lisa. We are trying to avoid surveys and adding questions to this for a number of reasons.
MR. MENDELSON: The issue is that our methodology for updating is to -- there are a number of aspects of it, but we are going to be sending e- mails to everyone who is identified as a link. It is unfortunate that I can't actually demo it, because it's a Web site. Anyone who has been on the Web knows that the art is in the functionality; being able to jump back and forth.
This really a resource locator more than anything else. If the state gets on and wants to find out what other states are doing in executive information systems, or linking Medicaid to other data sources, they can pop around and send an e-mail to the person who is doing it in another state. That's really the whole idea, is to establish more connectivity.
So the way we are going to actually update it is we are going to go back to the people who gave us information in the past and solicit an update. So to the extent that we have someone who is involved in Medicaid, we can add a question that says, what is happening with Medicaid managed care. That is no problem.
But if it is actually being handled by a separate person in a separate office, it won't come up in the update with our current methodology. The methodology is really important by cost, as well, because going back out to find new contacts is an extremely cumbersome process.
MR. HITCHCOCK: We also are hoping to do some sort of evaluation on the utility of this thing, just go around to the users, the people in the states. Is it actually useable to them? What would the suggest changing? Even simple things like finding out how many people -- not just states, but how many people in general are viewing this, how many hits do we get it on, is helpful to researchers.
DR. IEZZONI: I thought you could count numbers of hits to Web sites, can't you? Have you looked at that yet?
MR. MENDELSON: That is going to be added.
MR. HITCHCOCK: That will be added. We don't have it on there now. The APSE server, at the time that we put this on, didn't have the functionality, but now it does, so it is going to be added.
One other thing that I would like to mention in closing, or at least from my perspective, there is a lot of information here. This is 600 pages of text. Everyone was laughing at me when I was walking out of the building with this document, because these was going to be our first paperless deliverable.
In any case, there is a lot of information in here. Again, it is a resource locator, et cetera, but what hasn't been done, and was really outside of the scope of what we were asked to do is analysis based on this. Nothing would make us happier than to see folks from other organizations, government, private sector or wherever, go into this and do analytics based on the registry. This is like a database.
DR. IEZZONI: I actually did want to ask people like Jeff and Leighton Ku, you are doing projects that theoretically could utilize a system like this. Have you been aware of t?
DR. KU: I knew this project was being set up, and remember of hearing of it maybe one or two years ago, but I must admit, I haven't visited the Web site. I think it looks like something that is potentially very useful where you want to be able to access information about states in a sort of relatively uniform fashion.
DR. IEZZONI: And Jeff?
MR. KOSHEL: We knew it was under development. At the time the panel was considering issues around the first report, it was not available, but we would very much like to have it.
MR. MENDELSON: You have access to it.
DR. IEZZONI: There was somebody from Nebraska in the audience. Do you want to comment at the microphone?
DR. BREWER: I guess one thing I wanted to comment on was the question that related to linkage of chronic disease databases with the Medicaid managed care database. We actually have just established a Medicaid managed care work group that includes the state epidemiologist, myself, people from the Medicaid program.
Actually is one of our first activities I made a site visit to Missouri and spoke with Garland Land(?). One of the issues I would just like to mention as an impediment to doing some of this linkage is something that I think is demonstrative of some of the turf issues that were alluded to, which is the fact that a lot of our public health databases in Nebraska don't have source of payment information.
So for example, if you want to do linkage with birth certificates, which of course is maternal and child health, which obviously is a big ticket issue within Medicaid in general, and Medicaid managed care, you really don't have an easy way to subset out that population.
So I think that would be something that would certainly be worthwhile considering is recommendations about getting source of payment information so you can readily subset out the Medicaid population.
DR. IEZZONI: Thank you.
Was there somebody from Arkansas in the audience? From the health department -- did I remember that?
Does anybody from the audience have any experience with this Web site?
MS. GIORDANO: I'm Laura Giordano and I'm from the Public Health Foundation. We're involved in a project with HHS where we are sort of compiling a list of best practices and data usage, and developing a training program. In fact, we were just in West Virginia conducting this program. We use the Lewin site a lot, just sort of to get contacts.
All of the contacts that are list are very open to having people call and even better explain just in fact what made their practice work or didn't work and that type of thing. So I think it's a great resource, very useful.
DR. IEZZONI: Good.
Carolyn, you have used it. Do you want to make any comment about it other than that?
MS. RIMES: I was looking for something even more obscure, which was Medicare managed care, and trying to get some contacts per state for some important new job that I have, I guess my real job. There is extremely not only helpful, but it saved me what I figured was an awful lot of time. I found it absolutely very useful.
MR. MENDELSON: I think one of our issues has been publicity. It is hard to publicize a project like this to the right audiences, and we have struggled with that. We sent out about 500 postcards announcing the birth of the registry. We did various things, but recognize that this is still an area where we are lacking.
One of the things that we have done to try to enhance the visibility of the site is to approach AHCPR, and Chris Williams and colleagues in the area of dissemination are very interested in working with us. We are going to be getting together with them at the end of October to talk about how they might be able to help publicize the registry.
DR. IEZZONI: One final question, just going back to what you described as the MediCal folks' concerns about producing health information systems to help them manage their Medicaid managed care, you mentioned something about HCFA and their concerns that some of the requirements from Baltimore were impeding their ability to do what they felt would be most useful to them in California.
Can you describe that a little bit more? Can you let us know whether any other states kind of echoed that same kind of concerns?
MR. MENDELSON: A number of other states echoed it. It was echoed in Maryland, where my understanding is that a parallel database is being created through one of the universities. I'm a little fuzzy on the details there.
Quite frankly, I don't consider myself expert in any way in the data system requirements. I think we do have some people from HCFA here. Maybe they would want to comment on that. We heard probably from a half a dozen states that the requirements that HCFA put on transmission of data is hurting them.
We also internally within Lewin have a lot of experience working with the HCFA 2082. I know that Sara and her colleagues have also worked with that. I don't know whether she is going to comment on that. One of the big issues of the 2082 is that Medicaid managed care is not included in that database. So if you look at say drug expenditures per patient, you are looking at the indemnity population, not the managed care population.
I think it's important to point out that as the percentage of the population in Medicaid managed care has grown, that database has deteriorated as a characterization of the Medicaid program generally. It is recognized if you go onto the Web site for the 2082 at HCFA, and you can download the data. On that home page for the 2082 it says Medicaid managed care is not included in here, so as a result, you need to be careful in interpreting the data. The lack of a consistent database is really I think going to get worse, before it gets better.
MR. VAN AMBURG: I have one more comment or suggestion for the update, and that is to try to get some information on the linkages of state databases to private sector database, particularly managed care organizations. There is a lot of activity of linking health department outcome databases with service databases from the private side in addition to Medicaid.
MR. MENDELSON: I think that's an important point. Actually, there Washington state has a really interesting pilot in the public health labs where they are working with Group Health Cooperative of Puget Sound to try to import lab test data and kind of feed that into the public health system. It's a great project, and one that I know that is going to be watched very carefully. It is funded by the CDC.
Another one of the issues is that a lot of the managed care organizations just aren't collecting the data that is required. There, actually Michigan's recent RFP is addressing that. It's one of the issues I think the committee might want to look.
DR. IEZZONI: Which is specifically?
MR. MENDELSON: Managed care organizations often do not collect the encounter level data that would be required to do meaningful analytic work.
DR. IEZZONI: Yes, we've had that debate.
MR. MENDELSON: There are some very capable databases. Group Health Cooperative has a great database. We have worked Ed Loveless(?), who has a great database. We've worked with some of the larger ones, but that is a really small subset of the organizations that are assuming risk. So I think that's an issue.
DR. HARDING: Are there expectations on managed care companies that they do that at the present time?
MS. ROSENBAUM: That's the issue; there are not, either at the HCFA level, nor at the state level, but this not a problem unique to Medicaid. This is a problem that covers all managed care contracts being written today.
So I think as this committee debates this issue, the question is going to come up again and again, what are the data collection and reporting requirements that are squarely on managed care contractors, whether they are employee benefit plans, whether it is OPM, whether it is HCFA writing a Medicaid contract, a state writing a Medicaid contract. This is just one of the many unanticipated consequences of this conversion I think, that needs to be addressed.
MR. MENDELSON: To be a little less tactful, and to echo the point, states need this data, and are not getting it. The only way that they are going to do quality control on Medicaid managed care is to have access to this data. So states don't know what the quality is. They don't know if quality is degrading or getting better or staying the same. I mean it is really a major issue.
Michigan does have some language in the recent procurement that requires the managed care organizations to submit the data. It will be interesting to see how that plays out. It is a very well thought out RFP, if anyone hasn't seen it.
MR. SCANLON: As part of the waiver process for Medicaid managed care, wasn't each state in essence agreeing to do an evaluation of its own, and in addition, HCFA was doing a national evaluation of Medicaid managed care? Doesn't this get into encounter data?
MS. ROSENBAUM: I'm sure this is something that Leighton will address more in his remarks. I know from our work, in fact when HCFA approves the large 1115 demonstrations and the 1915B demonstrations, it does require encounter data, but of course even assuming that states are able to get the data, that they pass that obligation onto the contractor, which is definitely not the case now in all states. If it is not in the contract, the contractors is not bound to do it, it is still on the state to do it.
Even if the state passes that requirement on, it is a tiny slice of the data that are being potentially lost here. The encounter data of course are not the same thing as having the claim, from which you can do diagnostic analysis and other analysis. It's just literally a count of encounters, unless you are more specific.
DR. IEZZONI: Let's take one final comment from the audience.
DR. BREWER: I was just going to say that having a requirement that encounter data be reported is certainly no guarantee it is going to happen. We enacted Medicaid managed care in the three urban counties in the state two years ago. We are just now starting to get encounter data back. My impression is that that is not uncommon in a lot of states. In fact, I have heard stories of five years or so, and maybe Sue Dodds is going to talk about this later on.
I think one of the challenges is how we make this data useful to the plans. I think getting back to the quality issue, if we can start generating some quality indicators using the encounter data system, I think plans may start to recognize that the information is in their own best interest as well.
DR. IEZZONI: Great, one final comment by Richard.
DR. HARDING: I think that's a good point. It's very hard to get that data. Then on what basis are plans re-upped? What is the process? If it is time to come around for another renewal of their contract so to speak, on what basis is that done if there is no data?
DR. IEZZONI: Why don't we let that be a rhetorical question at this point?
DR. BREWER: [Remarks off mike.]
DR. IEZZONI: Great. Danny, actually I know you spoke to me beforehand, and said, I don't have anything to say to this, but it's obvious that you did. We really thank you for your presentation. If you wouldn't mind just hanging around for a few more minutes, because we might want to return to some of the issues.
Robin, I guess you are on.
DR. COHEN: Good morning. I'm from the National Center for Health Statistics, and I'm going to be talking about one of our data sets, the National Health Interview Survey, and how we can use it to monitor access to care for vulnerable populations.
Since the creation of Medicare and Medicaid in the 1960s, measuring and monitoring access to care has been a central concern for public health and health services researchers. In the not so distant past, the National Health Interview Survey traditionally included health insurance questions every two to three years, and access questions occasionally, but by the early 1990s, there was a growing recognition that these items needed to be addressed more frequently to monitor the changes in the health care delivery system.
As a consequence, a family resources supplement was developed. It included questions concerning access to care, health insurance, and income and assets. It was fielded starting 1993 through 1996. Questions that were developed for the 1993 through 1996 supplements are still fielded in the new CAPI, starting with 1997, although they are part of the basic questionnaire for the National Health Interview Survey now; they are not a supplement.
My presentation will concentrate on the use of the health insurance and access to care topics, and how they can be used to monitor access to care for vulnerable populations. I will present some background information about the items available in the survey for analysis,a nd then I will present a few slides as a result of our own analyses, which have been recently released as three reports on access to care for children, working age adults, and older adults or the elderly.
To use the health insurance and access to care questionnaires of the National Health Interview Survey it is also important to understand the basic or core questionnaire of the survey, for it's from the basic or core questionnaire that we gather most of our socio-demographic information.
The basic questionnaire of the survey has measurements of: health status perceived; disability days; activity limitation; and acute and chronic conditions, minority status; race; ethnic origin; if a person is foreign born; socio- economic status; income; poverty status; education; and occupation.
It also has information location; if a person lives in an urban, suburban or rural type of area; the size of the MSA; some basic access to care measures such as doctors office visits, hospitalizations; family structure, marital status, size, relationships. These variables provide an important framework in which to evaluate the access to care and health insurance supplements.
Starting in 1993, and continuing through 1996, the access to care supplement included questions on usual source of care, including type of care, place care, type of provider, reasons for change in the usual source of care, and reasons for no usual source of care.
We also asked about unmet need, that is, whether or not a family member needed medical care, but could not get it. We also inquired in the same manner about dental care, mental health services, prescription medicine, and eyeglasses. In addition, respondents were asked if care was delayed because of worry about cost.
The questionnaires in 1993 and 1994, were similar, with only a few modifications, however, in 1995, more fundamental changes were made to the access and insurance questions. I will highlight some of these changes, so that you are aware of them for your own analyses.
In 1993, we asked about some routine care questions about child, and if they were satisfied about the quality of the care. These questions were dropped in 1995, and in 1995 and 1996, all respondents, regardless of age, were asked if they received preventive care from their usual source of sick care.
For the health insurance topic, information was collected concerning Medicare or Medicaid, other public assistance programs, Indian Health Service, military health coverage, and private health insurance.
Additional detailed questions were asked concerning private health insurance plans for up to four plans per household. Detailed questions about private health insurance covered such areas as: who paid for the plan; was the plan a single service plan; was the plan an HMO or under some kind of managed care arrangement; is there a provision for opting out; does the plan cover well child care?
Additionally in 1993 and 1994, a question was asked whether the plan covered a mammogram. In 1995, this question was dropped. The respondents were asked if their private health insurance plan paid for any part of the cost of dental care.
In addition, beginning in 1995, questions were asked in the Medicare and Medicaid sections on the insurance supplement to determine if participants in these programs were under some sort of managed care arrangement.
Also beginning in 1995, the National Health Interview Survey was redesigned. The new sample design improved the statistics for minority and elderly populations. Minority households are selectively oversampled in areas of high density of black and Hispanic persons. It also screens out excess non- minority households.
Now I would like to switch gears a little bit, now that you have a basic understanding of what is in the health insurance and access to care supplement, and I like to highlight some of the results of our own analyses from these surveys. Previous studies have shown the importance of having health insurance and a regular source of care in assuring that persons in need of medical care have access to it.
Our analysis goes beyond previous descriptive studies on access to care, because it also presents data on unmet needs. Traditional measures of access to care are based on contact with the health care system. The assessment of unmet need represents a perceived need for care that does not necessarily result in the use of services. There may or may not be negative consequences for health resulting from lack of care, but it is important to estimate the volume of need that is not being addressed by the health care system.
I will present data from the three recently published reports, which I had told you about before. The National Health Interview Survey sample is selected so that a natural probability sample of households is interviewed each week throughout the year. The survey is a continuing household survey of the civilian, (non?)institutionalized population of the United States.
The access to care supplement was administered only in the third and fourth quarters of 1993, due to funding limitations. A total of 61,287 persons were sampled from 24,071 households. Was the overall response rate was 88.6 percent.
Because the sample is only based on the second half of 1993, there may be some seasonal bias to the estimates. The population estimates for the presentation are inflated to national population controls by age, race and sex. The population controls are based on 1980 census, carried forward to 1993.
Since the estimates shown in this presentation are based on a sample, they are subject to sampling error. Percents and standard errors were calculated using SUDAM(?), a statistical program for survey data analysis that incorporates the National Health Interview Survey sample weights and complex survey design into its estimates. SUDAM uses Taylor first order series approximations to make the estimates of variances.
I will be discussing the access to care for three age groups: children, ages 0-17; working age adults, age 18-64; and the elderly, age 65 and over. These populations were looked at separately, because they have really different health needs and characteristics. Children need preventive care, developmental assessment, and monitoring for physical and emotional well being, and are dependent on adult care takers for access to their health care services.
Working age adults are disproportionately uninsured relative to children, and the elderly are generally responsible for their own well being and access to health services. The elderly are more likely to have physical limitations and chronic conditions than the younger age groups.
Although there are many possible socio-demographic variables which I could discuss, I will only be able to focus on a few this morning. The variables I'm going to examine more closely include: age, race, income, and insurance status. The access variables I'm going to look at are: regular source of care, unmet need, and also adult immunizations.
The next three data slides will examine regular source of care. Persons were classified as having a regular source of care if they responded that they had at least one particular place that they usually went to when they were sick or needed advice about their health.
In 1993, overall 94 percent of children had a regular source of care; 83 percent of working age adults had a regular source of care; and 94 percent of older adults had a regular source of care. Children and older adults were more likely to have a regular source of care.
Family income was important in children having a regular source of health care. Overall, poor children were at greater risk of not having a usual source of care than wealthier children. The likelihood of having a regular source of care rose with family income from 89 percent for children with family incomes of less than $20,000, to 98 percent with family incomes of $35,000 or more.
Differences in having a usual source of care by income occurred within each racial and ethnic group included in this study. For example, among Hispanics, the percent of children having a regular source of care ranged from 83 percent for children and families with an annual income of less than $20,000 to 97 percent for children from families earning $35,000 or more per year.
There is also an equally strong gradient between family income and regular source of care for working age adults, however, for older adults family income was not a strong indicator for regular source of medical care. This may be due to the major of the elderly having Medicare, which provides a basic level of access to the health care system.
Health insurance status plays a key role for working age adults in having a usual source of care. Approximately 9 out of 10 working age adults with private or public health insurance have a regular source of care, compared to 6 out of every 10 working age adults without health insurance. A similar relationship between health insurance and status of having of regular source of care was also found for children and for elderly persons.
The next few slides, I will present data on unmet need. As I mentioned before, the measurement of unmet need represents a measure of perceived need for care that does not necessarily result in the use of services. Unmet need was based on a series of six questions. A person who answered yes to any of the following questions was classified as having an unmet need: need medical services or care or surgery, but did not get it; delayed medical care due to cost; was unable to get dental care, prescription drugs, eyeglasses, or mental health services.
Overall, 43 million persons in the United States had unmet need in 1993. This is counted for 17 percent of the population. Persons with unmet need were disproportionately among working age adults, accounting for approximately 75 percent of those persons with unmet need.
In the United States over 7.3 million children have difficulty obtaining at least one of the medical services they needed in 1993. Compared to children with private health insurance, children with no health insurance were seven times as likely to be unable to get medical care; six times as likely to be unable to get prescription medicine; five times as likely to delay seeking medical care due to cost; three times as likely to be unable to get dental care; and three times as likely to be unable to get eyeglasses.
For working age adults, 33 million working age adults have an inability to obtain needed health care. About 40 percent of uninsured persons, in comparison with 16 percent of insured person reported an unmet need. In comparison to persons with private insurance, uninsured persons were seven times as likely to be unable to get medical care; six times as likely to be unable to get prescription medicine; four times as likely to be unable to get dental care; four times as likely to delay medical care due to cost; and three times as likely to be unable to get eyeglasses.
While adults with health insurance are more likely to receive health care services than uninsured adults, there is a wide variation in the specific services covered by individual private and public insurance plans. This may have impact on the timing of receiving health services.
Finally, for older adults, 3.3 million persons of this age group reported an inability to obtain needed health care services despite the availability of Medicare or Medicaid. Over 1.4 million elderly persons in the United States delayed getting medical care due to worry about the cost.
This I made a comparison between the elderly persons with private health insurance and those with Medicare only coverage. Elderly persons with only Medicare were four times as likely to be unable to get eyeglasses; three times as likely to be unable to get medical care; three times as likely to be unable to get prescription medicine; two times as likely to be unable to get dental care; and two times as likely to delay seeking medical care due to worry about the cost.
The final data slide I'm going to show today will look at the relationship between clinical and preventive services, and insurance coverage for older adults. To obtain this information, I combined the year 2000 supplement data on adult immunization with data from the health insurance supplement.
Among older people, type of health insurance coverage was related to receiving certain clinical preventive services, including routine physical examinations. Fifty-five percent of the elderly with Medicare and private coverage received a flu shot in the previous 12 months, compared with only 33 percent and 39 percent of the counterparts with Medicare and public coverage, and Medicare only, respectively. We can see a similar relationship for persons with the pneumonia vaccination.
Although these are very basic tabulations, they do give a general insight and overview into the differences in access to care between the three different age groups. While these national estimates on access to health and unmet need are valuable benchmarks, they are probably underestimates. For children, some parents may not recognize their needs for their children for preventive health, dental or mental care.
People may be reluctant to admit their inability to obtain health services. For the elderly, despite the availability of Medicare and Medicaid, many do not get routine preventive services such as immunizations for the elderly, and for females, mammograms.
Several studies of adult populations have shown that there is less communication overall provided to low income patients than those of higher incomes. Also, some populations known to have high rates of problems obtaining health care may have been underrepresented. Persons who are homeless, and those who move frequently such as migrants have poor access to health care. The homeless were not included in the National Health Interview Survey.
The relationship between social class and access to health care is complicated, and it involves not only traditional measures of socio-economic indicators such as income and education, but also health beliefs and cultural practices.
Thank you. Does anyone have any questions?
DR. IEZZONI: Thank you for the informative presentation.
Do any of the committee members have any comments or questions for Robin? Maybe I'll start.
Robin, one of the concerns that has often been raised is that the NHIS is a nationally representative sample, but unfortunately there aren't adequate sample sizes at the individual state level to be able to make state- specific estimates. People have talked about the possibility of states buying into the NHIS, to conduct NHIS on a sample of their own population so they could have state estimates.
Is that something that is going forward? Has anybody kind of talked about actually doing that, or is that still kind of very speculative? Does anybody know?
MR. SCANLON: Well, I can answer a little bit about that. Well, it is the policy of HHS now to allow any state that wants to buy in, to buy in, but not many states take HHS up on it.
DR. IEZZONI: How many?
MR. SCANLON: There are only two states that I know of.
DR. IEZZONI: There are two states. What are they, Jim? Do you know?
MR. SCANLON: California and Rhode Island.
DR. IEZZONI: California and Rhode Island are actually going to buy into it.
MR. SCANLON: There is another initiative that may actually be more attractive to states. Collecting information the way the HIS does, where you actually send out interviewers to 58,000 households is very expensive. It is expensive for the federal government and it is expensive for states as well.
One of the alternatives that we are working with NCHS now is to try to use a capability that we have developed for telephone interview surveys that can be -- it is not telephone surveys alone; it is telephone surveys whose data is combined with information from the health interview survey and other sources, so that you can make fairly reasonable estimates for the state.
We actually will have within a month, five state projects underway. I can tell you a little bit -- and George, we were talking a little bit about this. What we have done is designed this so that we can draw questionnaire modules from the national surveys like SIP or the health interview survey, so that a state can compare its estimates to what a national figure or region figure might be.
It is also designed where there are modules. So there is an access to care module, health status module, health insurance modules, and welfare modules, and child well being modules. So it is in a fairly early stage. We have two states -- actually, Washington state has participated, and Iowa were the first two states to work with us on the health status module.
We will be picking one state and one metropolitan area region as a test for the welfare module, and I think we haven't decided the state yet. What we hope to do is then have this mechanism available so a state can mix and match the different modules, a federal agency can mix and match, but it is built upon a capability for telephone surveys that NCHS uses in the immunization survey, which does make estimates for all 50 states.
DR. COHEN: The only difficulty is that you do lose some of the vulnerable population that does not have telephones.
MR. HITCHCOCK: You do have a PSU in each of the states. We are working on methodologies as well that would adjust for the effect of non- telephone households. So you can actually use the household data to come up with some sort of an adjustment factor to see how far off you may be with the telephone data.
DR. IEZZONI: How is California dealing with the fact that I guess you have a Spanish translation version, but don't have any Asian language versions. Are there any?
MR. SCANLON: No, not for the telephone.
DR. IEZZONI: So for California, which I guess is one of the two states that has bought into the traditional NHIS methodology, do you know, Robin --
MR. SCANLON: We'll have to see how this works. I think we will have an Hispanic version available. We haven't really had to deal with some of the others.
MR. HITCHCOCK: I think on the telephone survey what they do is go through AT&T service.
MR. SCANLON: That's right, we get an interviewer who speaks the language.
MR. HITCHCOCK: Interprets the questionnaire, which is a lot different actually than developing a questionnaire in a certain language.
DR. IEZZONI: I wanted to actually ask a question that draws on that. When you telephone interview people, and you say are you part of the Medicaid managed care program, do people know how to answer that question?
DR. COHEN: It's not asked in that way. It is basically asked if you had to pick from a list of doctors -- either there is a series of questions you have to pick from a list of doctors, or can you go to your own doctor. It's basically asked not, are you under Medicaid managed care. It's a little bit more subtle than that.
MR. SCANLON: Depending on the state you are in, the question is asked differently in the HIS. In California for example, the question would include an example like MediCal, depending on what the state name was.
I might mention we have a research project with NCHS and the Census Bureau to actually review the way we ask these health insurance coverage questions specifically for this reason, do people know what exactly -- they have a card that says Kaiser. They don't that they are Medicaid managed care particularly. So we have some laboratory testing now with Census and with NCHS where we will try to see exactly what people understand, and is there a better way to ask these questions.
DR. IEZZONI: Richard?
DR. HARDING: Dr. Cohen, I appreciated your presentation. Could you help me, I'm not a researcher. Extrapolate out for me what you are doing in effect, because it is clear that limited funds caused limited access. So then how are you going to use that to help improve that access? What would be the next steps? Now I'm not talking you specifically, but how would you set up a way to evaluate the improvement of that or ways to improve it?
DR. COHEN: This is only the first year of data that I presented, and actually we're collecting data every year. So far from what I can see from this data from 1994, is that there seems to be an improvement, or people overall feel that their needs are met.
DR. HARDING: If they are in a managed care program?
DR. COHEN: Well, I haven't looked at specifically if they are in a managed care program or not. I have looked at differences between private insurance and Medicaid or Medicare, or those that are uninsured, but I haven't specifically looked if they are under a managed care arrangement.
DR. HARDING: But that would be a possibility too?
DR. COHEN: That would be a possibility. You could actually separate those. I think there would be enough to separate those under who indicate that they are under a managed care arrangement with Medicaid, from those that are not, and look at some of these variables and see if they are similar or not.
DR. HARDING: And have the glasses and mental health and those kinds of things?
DR. COHEN: Yes.
DR. IEZZONI: Hortensia, do you have any comments?
DR. AMARO: No, that was my question, about being able to follow-up with some specific analysis to try to get at that.
DR. COHEN: I think you could do that.
DR. IEZZONI: Yes, and your disability supplements also might be of interest, because a large number of people on Medicaid are people with disabilities, and to see whether they look any different in terms of the fraction in managed care. People with disabilities need primary care and immunizations too.
DR. COHEN: There is also a lot more detailed access-type of issues on the disability supplement as well.
DR. IEZZONI: Well, as a background for what we are doing, we might want to see whether in some way we can get a few more analyses of NHIS data.
DR. AMARO: I was wondering, you said that you have primary language of the respondent, is that right? As a variable? I seem to remember it up there.
DR. COHEN: No, I think that only if a person is foreign born, place of birth; we have that type of information.
DR. AMARO: You would have whether the interview was done in Spanish or English, right, in this case?
DR. COHEN: I know that starting for next year they are going to have a Spanish version of the survey.
DR. AMARO: I've just been thinking of different populations it might be interesting to look at, the differential access or reported differences in unmet need by different subgroups, including language groups.
DR. COHEN: I think that there is a lot of cultural beliefs in effect that affect whether a person perceived that they have unmet need or not. If you don't know that you need immunizations, you are not going to perceive you're not receiving them, or if you don't know that you need mental health services or whatever, you are not going to perceive that you need them. I really think that in terms of that measurement, and even with having a regular source of care, that there is a lot of cultural influence on those measurements.
DR. AMARO: Yes, I think some more than others; like eye glasses or other things might not be as influenced by that.
DR. IEZZONI: Final comment from the audience.
DR. BREWER: Just a quick comment. I think your point about the value of state-specific data is certainly right on target. I think the National Health Interview Survey is very useful, but one of the things that we have found very useful in our state is the Behavioral Risk Factor Surveillance System. The BRFSS does allow you to identify uninsured populations. It also allows you to identify a Medicaid population.
Now at least as of 1997, there is a question that specifically relates to enrollment in a managed care plan. The big problem there of course is sometimes sample size, but you can oversample to be able to get better representation in some groups.
DR. IEZZONI: Good. Actually, we got contacted by somebody from the CDC, who unfortunately couldn't be here today, but wanted to remind us about the value of the Behavioral Risk Factors Survey for this.
Great, thank you, Robin. If you could stick around, we would love to engage you in discussion a little bit later on.
Sara, I guess you are next up for us. You weren't here to introduce yourself initially, so do you want to just say a sentence about yourself?
MS. ROSENBAUM: Sure. My name is Sara Rosenbaum. I'm a professor at George Washington University, and direct the Center for Health Policy Research. One of the things we specialize in is Medicaid managed care.
Well, I thought that the most useful thing for me to do this morning would be to focus you on what we have learned from our large study of Medicaid managed care contracts, and they came up actually during the earlier discussion.
We have, at the center, developed a nationwide database of the standard service agreements between state and Medicaid agencies and managed care plans; the full risk plans, not the small, primary care case management systems, or what is called the partial capitation arrangements, but the HMO-style plans. Of course when states develop service arrangements with managed care companies, they have to enter into large service agreements with these companies as a condition of getting federal financial participation from HCFA.
The contracts are enormous, and they are usually very detailed. What we have done at the center has been to take the standard agreements, which include the RFP and the standard document prior to its final execution with the company, during which time it can change some, but not a great deal, because of limitations under government procurement laws. You can't go into a negotiation and completely change the terms of the agreement.
These are the standard agreements, and we set up a database that actually can be found also on the Internet at this point. It yielded a 2,500 page plus report on the contents of these contracts.
The contents are divided into seven domains ranging from issues of: enrollment and who the plan is allowed to enroll either on a mandatory or voluntary basis; to services, what is covered, what is not covered under the agreement; provisions relating to access, what the access requirements are under the agreement; network composition and capability requirements; payment rules; business rules; and probably most important for this panel, at least given this morning's testimony, quality assurance, which includes of course collection and reporting of data.
What we concluded from this large study is that states are struggling mightily with the question of how to execute a service agreement with these companies. This is not surprising, given the enormous challenge of managed care. It is a challenge for any purchaser, particularly for Medicaid, because it is buying for a poorer population, a less well educated population, a sicker population by and large, and it may have less money to buy with than other buyers.
It is also important to note that for most of us, managed care really looks more like discounted insurance. We're in a plan where if we stay with a network, we get more coverage than if we go to a non-participating provider. We may have to pay a very hefty transactional fee for that, but we don't lose our insurance altogether by going out of network. We can go through a point of service option, and that is the most common form of managed care today, although it has different names.
With Medicaid beneficiaries this is not the case. You are in or you are out. There is no point of service option for poor people. They use the network that is set up for them, or they use charitable or uncompensated care. So being a Medicaid agency buying one of these managed care products means really negotiating the contents of the health care system much more than would be the case for an employee benefit plan.
The struggles that the states are encountering are visible throughout the contracts, and they are quite fundamental, even being able to tell with some clarity, what's in as far as a covered benefit goes, and what is out is often not clear. That is in part because of the difficulties of translating all of the Medicaid requirements into the language of these contracts.
States often inadvertently leaves gaps. There is no standardized language that states can turn to at the moment for a module on pediatrics, or a module on maternity; something that would give them some level of assurance that what they are describing to the companies is what they have to do themselves, because of course in Medicaid, unlike other forms of coverage, if the company doesn't do it, the state is still obligated. The obligation doesn't go away. It is the state's program.
We have started actually to develop standardized language for use in a variety of areas, including language for the CDC around a series of public health issues that are of particular importance to the CDC. They are in fact at this point one of our largest clients.
One of the big issues in all of this is data. This is coming up constantly in our work with the CDC. What data should contractors have to collect? Who owns the data? What formate does the data get reported in? Is a managed care company a provider for purposes of data collection and reporting?
Managed care has so up ended everything that to begin to look at the legal framework that is out there, and apply it in this context is very difficult. So for example, the vital statistics system in the states requires providers say to report the data, but it is not clear in every state law that a managed care company is considered a provider. It may be considered an intermediary. It may be considered an insurer.
So the duty of reporting, collecting, paying for the cost of collecting and reporting has not necessarily been put squarely on the company. Now that is not to say that the company couldn't turn to its network of providers and say, you've got to collect and report, but there are often so many ambiguities that this is a big issue.
So you need to, in a contract, address who owns the data; who has access to data; who has to report the data; who does the duty run to; who bears the cost of the collection and the reporting; and how do you reconcile any state or federal laws raising confidentiality or privacy issues with the manner and format of the collection and the disclosure?
It comes up obviously for the CDC in the area of vital statistics. It comes with the registries. It comes up with patient management and surveillance information. What is needed here for the Medicaid contract is actually no different from what you would need in a Medicare contract.
When we have 38 million elderly people someday enrolled in Medicare managed care, and you don't have the claims data anymore, and you don't have any diagnostic information other than what the contractor gives you to link back to registries or vital statistics, it will be the same problem. It's obviously the same issue for employer and private plans.
We have just begun actually our first project where we are looking for the first time, at employer plans, a subset of employer contracts to get a sense of what data they ask for. Now most of the time if a purchaser is asking for data, it is asking for data for its own internal management purposes. It is asking for numbers. It is asking for encounter data. It wants to know how many physician visits did we get for the premiums we paid you, or how many days in the hospital, or whatever.
It is not at all clear that most buyers other than the more sophisticated buyers, such as buyers that have been sensitized to the issues of health care management in data, necessarily know or have any interest in paying the added premium cost that it will take to have extensive diagnostic- based data; have data that is provided on a continuous rolling basis for course of treatment information. So underneath all this of course is the biggest issue of all, which is who is going to pay for the data in these contracts.
If you look in the provisions of the database that we have prepared, you can see that they are very sparse. Even in the states that have an obligation under their waivers to collect and report encounter data, do not necessarily put that in the contract, which means that somehow the state is going to have to get on its own nickel potentially, the data that only the contractor has.
This particular issue -- some of the issues that we deal with in this project are extremely variable. It's very hard to draft a one size fits all benefit package, because what a state wants to buy varies tremendously, although you can draft subpieces of it for states to use.
This is an area where standardization ought to be somewhat more possible; where sellers ought to be able to know this is your relationship to existing public data collection systems. You are the guys who provide the data, or you are not, and somebody else does. If the company doesn't do it, then you really have no way of getting at the data, because it is proprietary.
So I would say that the issue around managed care for this committee is focusing on realistically what it is possible to get companies to report, and developing some standard set of expectations that companies can come to embrace. They look for standardization as much as buyers should be looking for some standardization. It would really make their lives somewhat simpler.
Making sure that state laws on who has duties to collect and report certain data have in fact been brought into sync with the evolution of managed care law, which is probably not always the case.
DR. IEZZONI: Well, that has been a lot of food for thought here. This notion of what should be the standard data that these plans are required to support, is anybody serving a convening function on this and addressing this question?
MS. ROSENBAUM: Slowly, but surely. Actually to its tremendous credit, the CDC more than any other agency, as it learned about the project we were doing, came to be quite actively involved in this project. The Office of Managed Care at the CDC and its parent policy office have been exceedingly support of this work.
We currently have eight separate individual divisional clients at the CDC, ranging from tuberculosis through immunization through sexually transmitted diseases and HIV, lead, dental, school health, adolescent health, and a couple of more clients, diabetes.
One of the issues that everybody has come back to again and again is that as we work on development of standardized modules to put into the hands of states to use if they wish to do so, is an overarching module on collection and reporting of data.
It has been understood from the beginning that there are data that may relate to the specific divisional areas, but that there are many, many overarching questions that have to do with the fundamental relationship of managed care to the larger health care system, and how the data that are in these computers will jump out of them into your registries and your vital statistics system.
It will only happen if you address it in the contract. It has got to be a deliberate part of the product you are buying from a company. If you don't make it part of the contract, it will stay a function of government, basically, and not be a function of the contractor.
DR. IEZZONI: Committee members?
MS. WARD: You are getting at the core of what really bothers me about what is happening, and that is we are seeing enormous wastes of dollars state by state, struggling to do something that I think could perhaps be done in a more standardized, centralized fashion. We will get there if we wait for each state with incredible variations of dollars to put towards this.
Particularly in the environment of health plans being multi-state and national health plans, it makes even less sense to have one state after another trying to figure out how to do this.
Do you get a sense that states are hungry for your standardization? Because there always is also the national versus local struggle too, that I realize goes on, and how much national authority states want sort of put on them. What is your sense of working with states?
MS. ROSENBAUM: If we could somehow speed up and telescope the work we are doing, I am convinced based on the calls we get -- actually, I was just in Sacramento for HCFA on an entirely separate matter having to do with managed care contracts, this one around fraud. The first question was have you produced standardized contract -- this is from the states now -- have you produced standardized contract language that we can use that would tell us what to put in the contract, and tell the contractor what internal fraud control systems the contractor has to maintain?
Each time one of these issues comes up, the state agency is asking the logical and correct question, which is yes, we may want to tailor anything that we have as a standard to meet certain unique needs in the state, but I think that states are beginning to see that as they deal with multi-state companies in particular, and these companies are moving some of the transactions across state borders, that they have the same interest in being a purchasing group that employers have.
The more interesting question is this issue that was touched on earlier, which is what is the stake for other agencies? Here is where I think the CDC has been extremely important. That is, if you put money to develop data systems in the state health agency, you are essentially saying in this model that the state health agency needs to add to the premium that is being paid to the companies to underwrite a portion of the cost of the data collection and reporting effort, instead of trying to run the system yourself, if it is claims-driven data or diagnostic data.
Getting health agencies or other agencies to essentially build on a premium, or getting the Medicaid agency to see that in building a premium, it is a holding company now for multiple agency interests is not easy. That is why I am particularly intrigued with the Nebraska example. Actually, my program officer at CDC has mentioned this me.
Missouri is another state where you see a lot of collaboration between the health and Medicaid agencies, and an understanding that whether you particularly like it or not, you are going to be buying more than you are going to be making. The Medicaid agency, when it negotiates the contract, is representing a group of buyers really, not only itself or its particular line item in the budget.
That is something that will come over time. One of the ways you hurry that along is to begin to develop standardized language that people can see will require that a number of different players be at a table.
MR. SCANLON: Lisa, can I ask a question?
Sara, were there any unusually good models in the state contracts that you looked at?
MS. ROSENBAUM: There are a couple of very good models on diagnostic-based claims data that would allow an agency to look at how the care of particular patients is being managed. That would be Massachusetts. Massachusetts has put a lot of thought into the data that it is requiring plans to submit around certain diagnostic measures.
This bigger issue -- when we table we used tuberculosis as a sample, and we ran the database to find all the places where data related to tuberculosis, the incidence of tuberculosis, and treatment data related to tuberculosis was mentioned in the table we prepared for the CDC was basically a blank on the issue of reporting.
On the issue of service duties, there are a couple of states, most notably California, that has developed rather sophisticated tuberculosis modules for their contracts. But on this basic issue of who reports the communicable disease itself, who is responsible for that, for feeding into the surveillance system, it is one of those strange issues where people just haven't stopped to think well, who is the provider here?
MR. SCANLON: Normally these laws vary state-by-state. Every state has its own public health reporting line and a plan.
MS. ROSENBAUM: Exactly.
MR. SCANLON: Well, it depends.
MS. ROSENBAUM: Yes, and that's why I think in general there is an enormous issue that lies out there, which is updating the public health infrastructure statutes to reflect managed care -- definitions, terminologies, locus of duties, things like that -- where there is just a huge chasm between what the statute says and the realities of the market today.
MR. SCANLON: Just one more quick question, Lisa.
Aside from the client level data, Sara, in terms of reporting in contract language, do many of the contracts contain performance oriented indicators?
MS. ROSENBAUM: A number of the states for example, will require the contractor to report at least some of the HEDIS data, although I sit on the National Committee on Quality Assurance's Committee on Performance Measures and at our last meeting, discussing the data collection, it was noted that the Medicaid plan data are basically non-existent. I think that part of that is not necessarily the states haven't asked for it, but it's this issue of very slowly.
MR. SCANLON: Consumer surveys?
MS. ROSENBAUM: Most plans are required to have a basic quality assurance system. Virtually every state requires a plan to have a quality assurance system that includes the internal QA, practice guidelines, usually some consumer surveys, but again the instruments -- and more and more now as people pay attention to QA, they are beginning to develop standardized, internal management components like standardized contracting language.
I think one of the big problems is that people don't know how to put these various tools together. So for example, the consumer satisfaction instrument is exceedingly important in certain respects, and of almost no value in others. Knowing where you use it and when you don't is a big problem.
DR. IEZZONI: Sara, I remember back in the eighties the Medicaid tape-to-tape projects. Do you remember those?
MS. ROSENBAUM: Yes, I do.
DR. IEZZONI: The basic bottom line, for those of you who don't have the pleasure of remembering the Medicaid tape-to-tape projects is that even in the fee-for-service system Medicaid reporting was highly variable across states. So can you just tell me a little bit about -- we're focusing on standardizing for managed care -- what the kind of non-managed care part of Medicaid is doing in terms of standardizing data reporting?
MS. ROSENBAUM: The non-managed care?
DR. IEZZONI: Yes.
MS. ROSENBAUM: Just the straight plans? Actually, this is something that Leighton may be able to answer better than I, or Lewin may be able to answer better than I. All I know about it is that my friends who do this for a living may have a shrinking world to analyze. I don't know about efforts to standardize non-managed care data.
DR. IEZZONI: Well, that is very helpful, although sobering. Any final comments from the committee?
Jeff, we are going to hear from you. We have heard from you before, so I think we have you booked for 15 minutes, but Sara, don't go away --
MS. ROSENBAUM: I actually have to testify this morning.
DR. IEZZONI: I would like to hear very much from you, especially given what you have been doing, what you think our committee could do, and that's what we were going to talk about in 15 minutes.
MS. ROSENBAUM: Well --
DR. IEZZONI: Jeff, can you wait for a second, and maybe Sara can tell us right now?
MS. ROSENBAUM: Well, I think the issue is if the CDC has recognized this of course as an issue --
DR. IEZZONI: Could you define what you mean by "this?"
MS. ROSENBAUM: This meaning the issue that I testified about, which was the issue of standardizing some data expectations in managed care. I assume that contact has already been made with NCHS about getting NCHS and all of the experts in data involved in the effort on the part of the CDC to develop some standardized contract terminology around data collection and reporting.
At this point, that issue, plus the training and technical assistance around how to use the data that are collected and analyzed. My concern is that people are so focused on the data's use in a cost context, that for example, I have had long conversations with people at the CDC about the value of these data to help pinpoint localized problems, particularly surveillance data that would be used to tailor a contract.
The contract that is written for the population in Baltimore would you think would look very different from a contract that is written for a population in the Cumberland Mountains. They are very different populations. They may have different health risks. They may have different health problems. The expectations on the part of the contractor should vary.
So it is the use of the registry and statistical data, putting that in a format that is easy for purchasers to understand. Then assuring that the data that are needed that are in managed care systems make their way back to the registries, surveillance systems, and other systems that you have are the two fundamental roles, I think, for this committee.
DR. IEZZONI: Well, you know I need to make clear that our committee doesn't have a huge amount of resources, but we do have kind of convening power, and can make issues more visible, and kind of make people aware. So you think that would be viable?
MS. ROSENBAUM: I think what you have to understand basically about the new system we are in is that we are approaching a time when the very structure of the marketplace and the proprietary nature of information means that you will not have data. So that is really the number one issue for you at this point, is making sure that before too much longer goes on, that all purchasers are quite aware of the importance of not allowing data to disappear.
I think that you would find in the industry, a great willingness actually if the requests and the requirements could be somewhat standardized for them, because they are a very standardized industry. Despite the nature of this product, this industry is much more standardized I think than people realize. So you need to be able to talk to them in same way.
It really has gone on for too many years. It is one of those issues that is so big, but so buried, that it has taken people a while to get to it.
MR. MENDELSON: If I can add one thing to that, because I am also going to have to run at the noon break. Telephones do exist, and I know Sara wouldn't mind a call; I won't mind one either.
I guess the thing that I find a little bit puzzling is where, within the federal government, is the real locus for responsibility for these issues. I think that the fact that Sara has contracts with eight different suborganizations within the CDC in some respects is kind of revealing.
MS. ROSENBAUM: Actually, it's one contract.
MR. MENDELSON: I'm sorry. We had actually addressed this a little bit in the work that we have done for ASPE in the context of public health laboratories. It's basically the same issue.
The other question in my mind is what is the role of HCFA in all this, and how is HCFA contributing to that standardization? I have attended a number of industry conferences recently in the area of Medicaid data, and one of the things that the vendors want is standardization that is years out. They need to basically plan for the future. If a requirement comes out and they are unable to meet it, they really don't have any option, but if a requirement is articulated for five years out that this is going to be the standard and this is where we are moving, that is something that can be accommodated.
It would be really nice to see some of those standards coming out of some locus within the federal government, but I'm not exactly sure where.
MR. SCANLON: The Kassebaum-Kennedy requirements for standardized transactions are exactly this sort of thing. Frankly, I don't think you are going to see the federal government mandating that encounter data be reported from anyone. It is just not in the climate these days.
The other issue of standardizing state law, public health reporting law, again, this is a state function, but the analysis in terms of looking at what might be common or something that the federal government could do as a convener, but again, that is a state responsibility.
So I just don't see mandating reporting to be honest, at that level, really in the cards. I could be wrong. This is not the climate for mandating at that level, reporting.
MR. PATTERSON: Our interpretation of the recent balanced budget act, especially for Medicaid actually requires the reporting of encounter data for Medicaid. The requirement that states meet the MSIS reporting requirements staring in January 1999, the language, although somewhat fuzzy, appears that we will also be requiring encounter data.
We will be building a standard reporting capability, and a standard format for states to report their Medicaid and managed care encounter data. We're in the process of doing now. I can't really speak for the Medicare folks, but I believe they are moving towards the reporting of encounter data also. So we are moving in that direction.
DR. IEZZONI: Actually, Marjorie, that raises a good point. We need to have a briefing on the Balanced Budget Act, because there is so much in there that has to do with health, and I guess now health data too. I didn't realize that. So at the November meeting with the full committee we should probably have a briefing on the Balanced Budget Act.
Jeff, you so good-natured. Danny, do you have any last words for us? We're going to put you off for a second, because I guess you said you have to go in a minute.
MR. MENDELSON: We found the work that Sara and her colleagues have done to be extremely valuable, but it raises a lot of questions. I think one of the questions that I have of Sara and her crew is -- even though she is not sitting here anymore -- is how they are going to accommodate updating, because for example in the Michigan RFP specifically does reference tuberculosis and about 15 other diseases. It really does deal with a lot of those more fundamental issues of who is going to do reporting.
So I don't see that as really getting at some of the things that are more current at this point, but I know that when you put together a database like that, it is very expensive to go back and update it.
DR. IEZZONI: Great, thank you.
Jeff, we heard from you three weeks ago I think actually, tomorrow three weeks ago, and your presentation sparked our interest, because it looked like you were doing so many things that we want to think about as well, and that we could inform our processes mutually. Can you just remind us about what you are up to?
MR. KOSHEL: It's interesting, this conversation is very helpful for us too. As I look at it now after hearing some of the presentations, I think the task that was given to us, the Panel on Performance Measurement, even though at the time we thought it was an heroic task, I think pales by comparison really to what you are all about, and I will explain why.
The Panel on Performance Measurement and Public Health was looking at specific categorical programs either funded by CDC or funded by SAMHSA. We threw MCH in there almost as an afterthought, but they were categorical programs where you could identify outcomes of interest. You could identify some program objectives, services that you want to provide, some capacity indicators.
As difficult as it seemed to us, eventually with enough work, you could come to some agreement around those basic measures. There was a program there, and you could make a case to a state as to why it would be interested in demonstrating superior performance to its sponsors. While some states might complain about having to do that, and they might not be interested in having their state compared to others, you still at least had a pretty well defined objective.
When I look at performance agreements for non-categorical programs, it is a much, much more difficult task. Medicaid really isn't even a program, much less a categorical program. It is a funding stream, right? Aside from optional and mandatory, states can basically do whatever it is they want. They can pay as much as they want or as little as they want. With some guidelines, they can cover people or not cover people as they see fit.
Performance agreements really do not seem to be -- I would be happy to have anybody else comment on this -- do not seem to be the sort of order of the day for Medicaid, much less Medicaid managed care. In some ways though, I think the managed care debate -- this is my own personal observation - - the managed care discussions and concerns that a lot of people have I think may be very helpful for all of this.
Before I get to that, why I think there may be a silver lining here, let me just say that I think the point Sara made last about the uses of data shouldn't be what comes at the end of your deliberations and considerations. I think they are the first thing that have to be addressed.
Just off the top of my head -- and you may have a much better way of classifying these things -- I can see data needed for performance agreements something like what we defined here, state level aggregates that you keep your eye on over time, to give you a rough sense, a very crude indicator of whether or not a state may need some help in certain areas; very crude measures.
All they can do is perhaps trigger technical assistance or some further study, but you do need state level aggregates, and you need some consistency in definitions. Even in that you are struggling here, because when it comes to substance abuse and mental health, there is precious little in the way of standard definitions and standardized data being collected across states today. This is even with categorical funding streams. Lots and lots of data are required to be reported, I might add.
The next level I would think of as sort of data for a purpose would be quality assurance. Clearly, the kind of detail that you need for quality assurance everybody is familiar with. It is several orders of magnitude more complicated than what you would need for performance agreements.
I think one could probably make a good case that the encounter data that has been collected over the years for private providers, whether they are Medicaid or Medicare providers, or simply providers of uninsured compensation claims; I have worked with states very closely over the last decade, and my observation -- I couldn't prove this if you ask me how I would prove it -- but my observation is that 90 something percent of the data collected, encounter data sent to the state is not used for any analytic purpose whatsoever, other than to sort of signify that hospital X, Y or Z is complying as we require them to comply over the years.
It is kind an indicator of whether or not you've got a hospital that is well managed, more than anything else, because they are sending the data in on time. So maybe they are treating their patients in accordance with good medical practice. This is an unorthodox opinion, I know, but I think it's a very crude measure for requiring so much information on such a regular basis.
The only thing that comes to mind that is sort of even vaguely measures up to that is the new requirements on welfare that states are required to do. They have to submit quarterly, a whole series -- for those of you who haven't looked at it -- a long laundry list of data to be reported on a quarterly basis, which would tell you almost nothing about the quality of the program, the people who are affected, how they are affected by it.
You would have to be an extremely inventive researcher. My friends at the Urban Institute and elsewhere are very creative, and they may be able possible, to tease something out of that database, but I don't have a lot of optimism there.
Anyway, then the third broad category that I can see data being used for is research purposes. As all of you know, there are tremendous differences in types of research being conducted, whether you are using the kinds of aggregate data that is used, or the Medicaid claims data that were used in the past and so on and so forth.
Or whether you are really trying to look at the impact of certain medical interventions and outcomes, and most that requires, that I have seen in the literature, requires good researchers to go in and get records. They tediously tally who gets what service and what the outcomes are. They take three or four years, and they usually have tremendous effect when some of the finds appear.
Clearly, to my way of thinking, setting data standards would vary tremendously by the type of use that one was contemplating using that data for. As I say, I think we have a much easier task when we are talking about performance agreements, than we are talking about either quality assurance or research purposes.
The silver lining, as far as I can tell here, is that the concern that most people have with managed care in general, and I suppose Medicaid managed care as a subconcern is it sets a somewhat, I think, higher priority for collecting information in the minds of the public, and perhaps some folks at state levels, and some folks at the national level that somehow we can't quite trust these folks, so we really better get some information about what they are about, and be able to use it in ways that perhaps we haven't used it before, which I think is very healthy. Regardless of the motive, I think the end point is very positive.
But I really do think that unless this committee -- and this is strictly my observation that you can take or leave -- is really careful in figuring out what it is that you think these data will be useful for, which of these major purposes, and how one could make a legitimate case to a state agency that this data is important.
I mean CDC for example, I assume can tell a state, look, we have categorical dollars coming to you for certain programs. We need to know not only what you are doing with our little amount of money relative to what you are spending via Medicaid and other things, we need to know what the whole package is buying us for example in chronic disease reduction or tuberculosis monitoring or whatever.
Therefore, we need to know how you are using Medicaid dollars to achieve some of these objectives and so on and so forth. They probably have a reasonable shot at getting state officials who write Medicaid contracts and Medicaid managed care contracts to pay attention to what it is they are talking about, quite beyond their rather small categorical dollars program.
Similarly in mental health, the federal government only provides about 4 percent I think of mental health funding. They are arguing that in order to understand something about the impact of that 4 percent, they really need to know data on what the state spends for mental health from other sources including Medicaid.
From my observation, SAMHSA has a harder road to go in terms of getting compliance, because the mental health people simply don't have the tradition of sending uniform data forward to Washington, and I think CDC has established a much better working relationship with states. I think the prospects of getting some sort of uniform data are much higher.
Again, I think CDC -- although this is strictly speculation; I'm sure anybody who is here from CDC can correct this if it is not true -- I think the impetus for states to comply with CDC on this is because they know that CDC has some performance expectations of a state around certain program areas.
My guess is unless that is conveyed to the states when it has to do with Medicaid, and specifically I guess Medicaid managed care, it is very hard to make the case that folks should go out and spend a lot of money -- and a lot of money -- if you want claims data down to the most specific service that was provided for an individual patient to be sent in on an ongoing, current basis, as all of you know, you can make a pretty good argument for sending in technical assistance and quality assurance teams to pull records, and do a pretty good job of finding out whether or not a provider is complying with standard practice and so on.
Having worked with states a lot, my suggestion is to somehow couch whatever it is that you are doing in terms of trying to come up with standardized data, and coming up with an agreed upon mission, an agreed upon rationale, an agreed upon use, and then work backwards to see what it is they can come into some agreement with on a common basis.
We went through that exercise a great deal, and I'm sure you know it takes a lot of energy to get those agreements in place. If they are in place, then I think the data needs somewhat can be teased out of that agreement.
That's all I have to say.
DR. IEZZONI: Very provocative and very --
MR. KOSHEL: If Sara were here I'm sure she would take issue with some of, if not all of what I said. It's too bad she had to go. We would have had a good discussion.
DR. IEZZONI: Any committee members have any comments?
So Jeff, I guess that your project specifically, at the National Research Council is focusing on the programmatic areas of mental health, substance abuse --
MR. KOSHEL: Yes, and somewhat broadly defined public health.
DR. IEZZONI: So are you working with the CDC, the eight different organizations that Sara alluded to?
MR. KOSHEL: Yes. CDC has not only engaged research folks, they have actually brought state folks to Atlanta to try to come to some agreement on standardized data in these areas around this whole notion of what do we want to accomplish, and what information do we need to provide documentation that we are making these accomplishments. I think that process is well underway.
DR. IEZZONI: Can you tell us a little bit more about it? About what areas, and how this has worked, and who is at the table?
MR. KOSHEL: Well, the areas that we covered in our report are the CDC areas that I think folks in their state agencies have been brought in to sort of help them -- chronic diseases and immunizations, and so on, tobacco cessation and so on.
They had our report and other reports that were developed by the department to use. My observation is they proceeded in a fairly efficient fashion. They basically said, here are what people are nominating for measures. Here is what they are suggesting be the data sources for those measures. What do you, as operational people who run programs think, both from a technical standpoint and from a practical standpoint of sending in the data?
I think that is a good way to proceed. I think MCH is, by the way, doing pretty much the same, and SAMHSA is attempting to also go down that same path. SAMHSA is hoping to put money out to the states, a fair amount of it if is approved, to help states upgrade their information systems capability for the purpose of complying with these kinds of performance agreements. I think that is a very healthy, straightforward model.
How Medicaid, how HCFA can follow that model, particularly as it relates to managed care, I can only speculate. I think it is a tall order of business.
DR. IEZZONI: Do you want to speculate?
MR. KOSHEL: I think Jim is closer to it. My thinking and Jim's --
DR. IEZZONI: Oh, you want to turf it, huh?
MR. KOSHEL: No, no, no.
MR. SCANLON: I'm not afraid to say anything.
MR. KOSHEL: No, I was simply saying I think Jim is right. I think the order of the day is not for the federal government -- I say this sadly -- to start coming up with uniform standards around who has got to supply encounter data, with what specificity, at what point in time, and so on.
I think unless the federal government had some ability, and maybe HCFA is working on ways of framing this in a way that the states will relate to it, of suggesting that this is a program of some uniformity around which we can make some uniform requirements and suggestions.
I think it is going to be a very tall order for this committee to come up with standardized reporting, except on the most commonly agreed point whether it is HEDIS or other associations have agreed almost at this point, and all they need is another sort of blessing on the part of this committee to go forward with what they have already kind of agreed to in some of these measures and some of the areas.
MR. SCANLON: Yes. In fact, the model was similar. What Jeff's group was actually looking at was taking three existing block grant programs that HHS administers, provides grant money to the states, and to try to agree to some performance-oriented measures. There has been traditional reporting along with the block grant application, and reporting at any rate. This was to try to provide a unified framework.
The idea was not client level. The idea was performance indicator- type measures. There was a very extensive process, regional meetings with states, advocacy groups and others to try to agree on maybe a national menu that the states could pick from, and they could even choose to emphasize one area more than another. It was the CDC preventive services block grant, the substance abuse treatment block grant, the mental health treatment block grant. Now we are pulling in the maternal and child health block grant as well.
That, as difficult as it is, as Jeff said, the Medicaid area is the whole other order of magnitude in difficulty, but there is of course through HEDIS, the idea of adopting the framework of performance indicators, Medicaid performance measures in fact through HEDIS, which are again, performance indicators.
Again, no one knows what the infrastructure for even meeting those data requirements is in the Medicaid. We have had decades in the fee- for-service area claims level reporting. It is just extremely difficult and expensive, and it's not clear what you really have even when you have archival data on all hospital discharges or all ambulatory care visits in a state.
Now I would think though, Jeff, probably for the most part hospital care data would probably continue to be available at an encounter level basis, just because it is such a big part of all of the expenditures.
MR. KOSHEL: Well, I think all of the data that is being collected thus far, will probably continue to be collected by providers. That is my own guess. I think the real question is, how much of that is forwarded to a state entity or to Washington?
At some point you simply need information on how to manage a case. Any credentialed provider is going to require those data, at least at the client record level. The real question, it seems to me, is how much of that information should be forwarded to the state for analytic purposes, to Washington for analytic purposes, to accrediting agencies for accrediting purposes?
Those discussions seem to have broken down,or at least they haven't gotten the jump start that one would hope that they would have. In the panel's deliberations, the members of the committee who represented substance abuse and mental health services were most concerned that the data that they have been getting in the past from fee-for-service providers on clients in treatment would not necessarily have to come forward any further under managed care contracts, because they have not been invited to the table with the Medicaid agencies negotiating managed care contracts in mental health and substance abuse.
It is not so much I think that those data would not continue to be collected on the clients at the provider level. It is simply that they would not come to the state, but they are most concerned about not having that information.
So my guess is that with that dialogue going forward -- and it is taking place at the state level today -- that more and more Medicaid agencies will sit down with other public health folks and figure out what data are needed on a continuing basis, have been provided in the past, that can continue in the future.
I don't think that is the dialogue that you all can settle for, because all that says is here is what we used to get, and we just want to be sure that we continue to get it under the new managed care arrangements, and that is presumably not going to satisfy anybody other than a few folks who are worried about data disappearing altogether.
DR. AMARO: I just wanted to say that with respect to the CDC, one of the things that we are doing in our state with the CDC is --
DR. IEZZONI: Massachusetts.
DR. AMARO: Yes, sorry. They put out contracts that different states competed for, and we got one in our state. I'm working with a state agency to do this. It's actually to field test and to come up with -- field test some of the performance measures related to HIV prevention programs, and to actually field test them in different states. To take it sort of one step further, to finally be able to move along in terms of which ones might be most useful.
MR. KOSHEL: I think the next step in that negotiation probably would be to get whatever is agreed upon by the providers that you are seeing, that are funded by the categorical program, to get them to agree to provide that information regardless of funding source, whether it is Medicaid or private insurers or whatever.
Once there is some agreement among the medical profession and the public health profession that certain data are absolutely essential for tracking those patients, that that standard be adopted across the board. But it seems to me at least that is the first step, to get that.
DR. AMARO: I would imagine -- we haven't gotten to this point -- but that a series of steps like that, with a long time frame is what we are going to need here before real standards or recommendations are made that some pilot studies are done to look at the different holes in gathering data that you mentioned.
MR. KOSHEL: One thing those of you who had a chance to study this report a little bit I think would appreciate is our panel decided not to try to come up with standardized data for performance agreements. We suggested that for certain outcomes we thought there was sort of a limited universe of relevant ones that you could get data for at the state level, but for the others we thought it was the process of setting up the data to be agreed upon, that we tried to set a framework that made sense to the participants about how that should go.
Then we tried to give enough illustrations so that it wasn't just a vague planning document. This is the kind of process measure you would use, you know. It may be -- this is only a suggestion -- it may be that some process like that, that you can delineate in terms of actually getting agreement and buy in from managed care providers and Medicaid managed care in particular, may be a very valuable outcome of the deliberations of your committee.
I know that a lot of the state people that I work with would appreciate that; that there be another formal recognition that all the relevant people should be at the table; that these things can be worked out in a way that makes sense to each of the folks in each of the states. So maybe just articulating that process may be extremely valuable.
DR. AMARO: I did have sort of a general question. I didn't know who to address it to, but maybe any. It's the question that I was talking to you about before the meeting, which is as somebody who works in substance abuse and mental health, and when we are interested in looking at costs, as well as outcomes related to mental health and substance abuse, and relating them to the impact of that on general health care utilization and cost, that people have discussed how hard it is to get data that links all those different pockets together.
There seems to be either a lack of awareness of interest, of people looking at the impact of cost in one pocket to cost in another pocket. So that if you spend money in substance abuse, what are you saving in other types of health care costs.
It would be useful to be able to link those better. I was just wondering if anybody could comment on that, on what sort of what we currently have, and what the problems are. How those might be improved, or whether some people don't think that's a problem right now.
MR. SCANLON: The department has funded Dorothy Rice a couple of times to visit that at a very macro economic level, to look at the direct and indirect costs of substance abuse and mental health treatment. Again, this is looking at what the total costs are; what are direct and what are indirect. You are talking about some of the indirect costs, productivity lost, days of school, and so on.
I think Dorothy did a -- what is it Dale, two years old is the recent report? I think Dorothy may be updating it. This is at a very high level though. This is national costs, direct and indirect for substance abuse and mental health. Maybe we can get copies of that and see if that would be something to pursue.
There is some research too in terms of, as you know, mental health problems in primary care and other --
DR. AMARO: Right. It's just that we found that in trying to discuss these issues with our Medicaid director at the state level, that unless you can provide the data for that state, they sort of well, that's someplace else. So to make the argument, it would be useful to have.
The national data or when other states have studied this it's very helpful, and we use it, but to be able to have more specific data.
MR. KOSHEL: I always feel sorry for people who are put in that position to justify the effectiveness of the dollars that they are spending. Almost nobody does it. Almost nobody can do it, I don't care what the field is. In those areas where we have some information, it is really the exception. We can go after the immunizations and so on.
The idea that somehow Medicaid in general -- thinking through if you do it this way, you get better results, or if you provide this service, you get better results, or provide that service, it is -- I think everybody should strive for that evidence and documentation. We say in the report that the reason why the panel chose to be fairly nonprescriptive in terms of measures is that the research evidence is not there that would allow any expert to say matter of factly, do this, do this, do this, and you can expect these outcomes.
In the absence of that, it seems to the panel that you should be fairly tolerant of what people are trying to do, and how they are going about doing it, as long as they can give you whatever documentation they have, and the strongest possible rationale they have for going after that objective.
DR. AMARO: I think that for those of us work in substance abuse and mental health that there is a different standard that those disciplines are held to, because we do tend to have a belief that somehow these are moral issues, especially substance abuse. So then suddenly you are held to a standard --
MR. KOSHEL: Except that there is one other thing that I think contributes to that sort of unfair playing field. The public health community has done, I believe, a really good job of trying to standardize some data. Whether it is the support for the behavioral risk factors surveillance system, or some of the other data collection efforts that the public health community has agreed to, and they have worked on standardized definitions and measurement, and they are further along.
It's very hard, as you know, in the field to get two or three substance abuse directors to agree to any common set of terms, much less measurement. I think it would be great, and I keep preaching to them when I'm at SAMHSA meetings and so on, that it would really help their cause to have that kind of uniform data collection.
Then almost it's at least a good faith effort to track accomplishments, even if you can't publish your results in The New England Journal of Medicine the next day, but at least you've got some common way of describing the problem you are up against.
I think the public health community in general has benefitted from the CDC, and the public health community has benefitted in general from that investment and that commitment to sort of more uniform data collection.
DR. BREWER: I just wanted to put in a plug for data standardization. I actually think there is some value in doing that, particularly in the context of encounter data. As we have been struggling not only with the issue of trying to get plans to report encounter data, but also thinking about how we may want to fine tune that system and add some additional information, it has been helpful to me to contact Marjorie for example, and find out some of the things that have been going in development of core data sets for reporting purposes.
The other thing that I would just like to share very briefly is that looking at this from sort of a broader public health perspective, I think it's important to recognize, as I think everybody here does, that the Medicaid population is an extremely important population, but there are a lot of other folks that public health serves as well.
When we are thinking about quality assurance activity, and particularly moving the next step into some interventions to try to increase immunization rates or mammography screening rates or whatever, I think that we are recognizing that where the encounter data is a very good starting point, you really often have to look beyond that, particularly given that you are dealing with a population that goes in and out of Medicaid an awful lot.
So I think you really have to start looking at some community-wide indicators of immunize use of mammography screening of whatever intervention strategy you are talking about. So the encounter data becomes a very important piece of the pie, but you often have to look at a broader set of issues as well.
MR. SCANLON: The committee does have some resources for analysis.
DR. IEZZONI: I know. I was just thinking of how we are going to spend that.
MR. SCANLON: Some of the folks around the table are part of our task order arrangement, so if there was a desire to look at these provisions in all the contracts, we could actually do that.
DR. IEZZONI: I think that that's where at least my head is heading. We'll be talking tomorrow morning about this, Jim, and hopefully by the end of tomorrow we will have spent a few dollars for you.
MR. SCANLON: The other point would be, Lisa, that in the area of standards, I think we actually do have the opportunity for standards for encounter data as a standard. Now who ultimately uses them is another issue, but the HIPAA standards will apply to plans, providers and others as well. So we may have the pieces of the framework in place.
DR. IEZZONI: It sounds like we need to learn more about what that Balanced Budget Act is going to require, because some of what we are discussing sounds like it might have moot. I know back in July that George had a big plea -- George was just like you, Jeff. He said, hey, before you require encounter data on everybody, what are you really going to do it? It's going to cost a lot of money. What are you really going to do with it?
But if the Balanced Budget Act is now saying that they are going to require it, it makes moot smoof(?) where we were having a slight argument. So we need to make sure that we're on top of what the current policies are going to be federally, the legislative mandate or whatever.
Jeff, we are going to keep in touch with you, because we need to learn from you, and we need to not duplicate what you are doing. Now, Jim is your project officer, right? And Carolyn has now gotten to know you, so we'll hopefully make sure that we are all talking with each other, and not duplicating or repeating each other's mistakes.
Thank you very much.
Any comments or questions from the panel? Are there comments from the audience.
We are going to take an hour break and reconvene at 1:30 p.m. Thank you all for presenting.
[Whereupon the meeting was recessed for lunch at 12:26 p.m., to reconvene at 1:30 p.m.]