Hubert H. Humphrey Building
Room 705A
200 Independence Avenue, SW
Washington, DC 20201
Discussion on Insular Territories Report - Mr. Hitchcock
Discussion of Future Meetings, Work Plans
DR. IEZZONI: We're going to start by retreating into study hall. People remember that from junior high school and high school. Each of us just literally got documents that we need to review before we can start a formal discussion of the issues.
Again, the agenda for today is that we are going to talk about insular areas report in the morning, and then we are going to talk about the Medicaid managed care report after we finish talking about the insular areas report. But we each just got the insular areas report this morning. So could we maybe take ten minutes, and everybody just kind of sit quietly and read over the insular areas report.
First, I would like Dale to just say the areas where he feels in particular that he needs help this morning from us.
DR. STARFIELD: Could also ask that you could sort of highlight where the major changes have been made?
MR. HITCHCOCK: As far as major changes, I tried to incorporate as many of people's edits as I could. I think I got some of yours, Barbara. I need to talk to you some more about a couple of the others. I incorporated most of Paul's, Hortensia's, and Lisa's and Carolyn's. I think some of the tone of Elizabeth's, and Paul's concerns also from our conference call.
So you will see things that happened throughout the report, but the main area that I tried to work on was that we agreed on the conference call was the recommendations. In addition, Paul did a couple of maps that you will see early on in the report.
The recommendations -- I tried to tone down some of the political text that we had in there. I worked on organizing the recommendations along fourth themes that we had agreed upon in the conference call. And I tried to take recommendations which were sort of embedded in the text, and breaking them out, so it was clear what was a recommendation, and what is just sort of background for a recommendation. The recommendations are in bold now. They probably should be numbered too. I think I will do that if people think it's a good idea.
Where I really need some help is again still the recommendation section. We talked in the conference call about trying to tie in Healthy People 2010 somehow into this report. I really mercifully I guess, have been out of Healthy People 2010 activities, and don't really know quite how we can make a recommendation around 2010, although I put in a little text explaining how I thought the 2010 process would be helpful to the people in the islands.
So I think that is about it in terms of additions and highlighting the areas where we made the most changes. Also, the tables are now in the back. That was something that I had thought about doing all along, I just hadn't really gotten to it. When I got Hortensia's recommendation that she thought they disrupted the text and should be moved to the back, I decided this was a good time to move them into the back. I think the text does flow better now.
DR. IEZZONI: Great. Okay, Dale, what we'll do is we'll spend about 10 minutes looking at this. Then we'll go around the room and introduce everybody. Maybe by then a couple more people will have shown up. So maybe at 10:30 a.m., let's be ready to start discussing the recommendations and the rest of the report.
[Break in taping while the committee reviews the report.]
DR. IEZZONI: Why don't we go around the room and introduce ourselves. Then let's talk together and try to finalize the report on the insular areas.
[Introductions were made.]
MR. HITCHCOCK: May I say a couple of more things in terms of where I need some extra help here? I was just noticing on page 21, glaring gaps. It's sort of a meaningless recommendation the way it is worded right now. Then again it just highlights below the Healthy People 2010 approach. I just don't really know where to go with that.
But I was just told a while ago that Olivia has arranged for Debbie Maiese -- we heard Debbie before. Debbie is the Healthy People guru here in the department. Debbie could come and talk to us a bit this afternoon. We could possibly work her in this afternoon at some point.
DR. IEZZONI: We should try to do that, but we're going to have some heavy discussions this afternoon with Sara Rosenbaum and Anne Markus coming in from GW. So let's try to do that.
My understanding also is that Olivia had e-mailed recommended for some language to Debbie. I think it is going to be important for the subcommittee to actually see this so we can discuss it now. So I guess in terms of what will appropriate, do you think we could get a copy of the e-mail from Olivia?
Basically, this is the final time that the subcommittee is going to have to discuss this. I don't think it would appropriate to have the recommendations go out without our having discussed them. So let's try to get that material.
DR. STARFIELD: Can anyone tell me whether the final objectives for 2010 are very different from 2000?
MR. HITCHCOCK: I don't know.
DR. STARFIELD: Have they been finalized?
MR. HITCHCOCK: I don't think they have been finalized, no.
DR. MILLMAN: Part of the problem is 40 percent of the objectives have no data. That doesn't include the sub-objectives, many of which have data for overall populations, but not for the subgroups. So I was at the Data Council recently.
DR. STARFIELD: Well, in terms of reducing disparities, it's not so important to have baseline data, because it is eliminating disparities that you basically only have to have afterwards data.
DR. IEZZONI: Why don't we do this. Why don't we try to be organized, and why don't we go through kind of page by page of the recommendations. So hopefully by the time we get to the 2010 recommendations, there will be more people here.
I understand that Vince actually will not be joining us. I haven't heard from David Takeuchi, but since he isn't here yet, I suspect he probably isn't planning to come. He won't be coming. So this is the crew here.
Let me preface this by thanking Elizabeth for agreeing to present these recommendations to the full committee when we meet in June, given that I will be out of town. So Elizabeth, you should jump in as well. If there are areas that you feel you need to understand better, the subcommittee's views, take the control.
The first thing was, Elizabeth in the conference call, was it just last week, I think it was you who had talked about developing context a little bit more fully for leading into the recommendations. And I think, Hortensia, that that might have been a concern of yours as well. Have you had a chance to look at what Dale has done, and do you have any comments for him on it?
MS. WARD: I think Dale got what I was talking about. I think it's there.
DR. IEZZONI: Okay, so Dale in terms of that is beginning on page 18, at the bottom of page 18.
MR. HITCHCOCK: What I want to do is go back and try to put more into the active voice.
DR. IEZZONI: I noticed that. I knew that you hadn't done that yet. I had said to Dale that I wanted this to be more alive in terms of the writing style. So he will go through and try to edit it to make it more the active tense, less kind of -- I hate to say it -- bureaucratic sounding. I could say it because he says it.
MS. RIMES: That's also our normal audience. I can't write active for life.
DR. IEZZONI: Well, Dale is planning to do that. I thought that I would take some final editorial control. So Dale, once you are done with it, if you can e-mail it to me without the maps, so it doesn't bog down the system. I can maybe do some final brush-up editing. So hopefully it will read okay.
So in terms of the context for the recommendations, that is on page 18, and moving onto page 19, and I think onto the top of page 20. Are there comments, suggestions for the context? Paul?
DR. NEWACHECK: I like the structure of this, having a preamble and a contextual statement that begins the discussion. And then for each of the recommendations, having a little bit of discussion then followed by a recommendation. We don't do that consistently as the general, but I think it's much better than what we had before, as you said, Dale, they were buried. They were harder to exactly what the recommendations were. So I think this stylistically works a lot better.
In terms of this first section, it strikes me that on pages 18 and 19, there are some recommendations that are kind of woven into this preamble part here, this context part. I think it really should be more just summarizing the kinds of comments, rather than making recommendations. For example, it says first and foremost we need data relating to blah, blah, blah, blah.
We probably shouldn't be saying what our recommendations are in this, but rather what the key findings were that are going to build up and make the case for the recommendations that follow. That's just a little bit of editing I think.
DR. IEZZONI: Hortensia, any comments on the context pieces, 18 through the top of 20?
DR. AMARO: No, I don't have any. Is that where you had the reference to the IOM study before?
DR. IEZZONI: No, it came earlier.
MR. HITCHCOCK: There was an early reference to IOM, and then there was one more here someplace.
DR. AMARO: I think when I sent you the e-mail, I had suggested that in the background in terms of putting this in context of other things that have been done, and have brought attention to why we might look at data needs of these areas, that it would be good, I would think, to put it right up front there.
MR. HITCHCOCK: Yes. I brought that along. There is not so much on health data in there, but that makes the case for us doing the study, as a companion effort along with this project.
DR. IEZZONI: Barbara, any comments on 18, 19?
DR. STARFIELD: No, and I just want to take the opportunity to say I think you did a fantastic job. It's wonderful.
DR. IEZZONI: Yes, great.
MR. HITCHCOCK: With all of your help, this is what got us so far.
DR. IEZZONI: Anybody from the staff -- Aaron, Jim, Michael -- have any comments on 18, 19? Hearing no comments, let's move on to the recommendations. The first recommendation I think is the one which I have heard consensus on the conference call was our leading recommendation, which is developing the health information infrastructure. That would be on page 20, and moving into the first half of 21.
So Elizabeth, any comments on that?
MS. WARD: No, I thought it really got it.
DR. IEZZONI: Great. Hortensia?
DR. AMARO: I like the recommendations and I like the structure. I still once in a while got lost, because sometimes the recommendation comes first, and some articulation of an explanation comes after. So I would just make that consistent, and maybe just have perhaps tabs and bullets, just to bring the eye to it.
Under the second recommendation there, NCH should consult -- I think it should read, with the Puerto Rico Department of Public Health.
MR. HITCHCOCK: Yes.
DR. AMARO: And if I get a chance to look at the 2010 or whatever Olivia recommends, for that I would be happy to comment on what we might include.
DR. IEZZONI: Let's wait about the 2010, to see if we can get the facts from Olivia's e-mail, because that might give us something.
DR. AMARO: I have nothing to recommend right now.
DR. IEZZONI: Great. Paul, do you have any comments on the infrastructure recommendation, pages 20, 21?
DR. NEWACHECK: I would echo Hortensia's point about having that little preamble to this too, so underneath an improved public infrastructure, there would be a few sentences that are sort of setting up the recommendation.
These three recommendations that are in this group here, particular the first one, and probably the last one are going to cause some new expenditures, or would require some new expenditures. Do we need to say something about funding here? Or do we just sort of assume that that will be taken care of by somebody else, or worried about by somebody else? In particular, I would doubt that NCHS has additional resources to expand the vital and health statistics program without getting some additional appropriation.
MR. HITCHCOCK: That's a good question. How do we want to go with that?
DR. IEZZONI: I think that we have built a case for our responsibility earlier in the document. We have also built a case, maybe not for Puerto Rico, so much as some of the other areas that health care and public health is less addressed than it should be. And so I think that hopefully given those two contextual pieces, you can't get away from realizing that more money would have to be spent.
I think that there is a nice quote in here about throwing money at issues isn't the right way to solve every problem. I think that that's nice to highlight. Maybe what we could do is talk about examining current expenditures on health data. We had talked about how different block grants, for example, have different --
DR. NEWACHECK: Yes, and there is a recommendation about that. I think maybe what would be useful is at the very end of the recommendation section to have a paragraph that says we recognize that many of these recommendations will require additional resources in terms of staff and dollars, and blah, blah, blah. We have made some suggestions about using funds more efficiently that are already being devoted to the terrorities and islands, that in addition, some funds will be required.
Just basically making the case that there is a great need for this, and it just has to be done. That sort of a statement.
MS. WARD: That's where I was going, some recognition that we understand that consequence. We still have to say this is not the problem.
MR. HITCHCOCK: Paul, that was very well put. I couldn't write it all down. Could you help me?
DR. NEWACHECK: I'll write it down.
MR. HITCHCOCK: Thanks.
DR. NEWACHECK: Sure.
DR. AMARO: I think the end is a good place to do, because you could easily say it in many places. Instead, it's a nice way to remind the reader at the end.
MR. HITCHCOCK: It probably should go, just be mentioned in the executive summary too.
DR. IEZZONI: Yes, I think at the end of the executive summary as well.
Barbara, do you have any comments on 20 and 21?
DR. STARFIELD: No, just on 23.
DR. IEZZONI: Okay, well, we're not there yet. I would like to proceed methodically, so we make sure that we have everything. So we're kind of set on this recommendation then with the addition of a final paragraph at the end acknowledging the need for additional resources, but also the responsibility that we have for thinking about how to get those additional resources.
MR. SUMME: Lisa, related to the resource issue, when we talk about health information infrastructure, I have the sense, particularly with suggestions like standard statistical analytical packages, that we are talking about the infrastructure that we would expect to see in the US. And when you go to some of these places, like for instance, American Samoa, where the GDP per capita is $2,000 per year, maybe we need to think in terms of a very different sort of infrastructure.
Maybe we need to look at perhaps the infrastructure that might be employed in a place like Mexico, or some other place. Places where some of this infrastructure has been established rather successfully, at much less cost. So we could potentially make a recommendation, and if the funding is available, then find, but if the funding isn't there, then do they do nothing? Where do we go?
DR. IEZZONI: I think we have to emphasize that local needs and approaches need to take priority and precedence. I recall at the July meeting that there was an interesting discussion I think around substance abuse, and how you get information around substance abuse in a population. And the fact that they used priests. Remember there was a Jesuit I think, who was very involved in the community.
MR. HITCHCOCK: Fr. Hentzel(?).
DR. IEZZONI: And by going from house to house was how they collected the information, which is a very different way than we might think about doing it, which is through health departments or substance abuse programs. So I think that, Dale, we do need to make the case, which I think you do, but maybe just underscore it to meet Jim's concerns that we need to consider the cultural context and the specific public health needs, and the capacities within each of the diverse territories when we think about priorities for where to start with setting up the infrastructure.
Do other members of the committee -- Elizabeth, any comments on that, or word suggestions? Hortensia?
MR. HITCHCOCK: I had thought -- this is just a sort of related subject that I had put some of Aaron's text in here, but I maybe didn't do it about the Indian Health Service systems, and how they could perhaps work in some of these islands. I talked with Roy Linwatta(?) about this. And Roy Linn had just been out to Albuquerque to look at some Indian Health Service hospitals out there, and their information systems.
I think at least one of the insular areas has more or less adopted the IHS hospital information system, maybe Guam, and that they are talking about trying the same sort of thing in the American Samoa, all funded I guess with the Department of Interior. And to the extent that we could support those endeavors with a recommendation here, maybe we could do that at the very last.
DR. IEZZONI: Maybe we should add a specific recommendation about that.
MR. HITCHCOCK: I guess it's on page 23 we've got some language on that. But maybe we could say more about that, since I've gathered just a little bit more information since I put this draft together.
MR. HANDLER: Our previous discussion was talking about local government agencies making decisions themselves, and allocating resources when available. I did get into that to some extent. It's not just hardware and software, but it's actually setting targets. The local decision-makers establish targets.
MR. HITCHCOCK: That, to me, is more Healthy People 2010 or overlap at least in Healthy People 2010.
MR. HANDLER: I know we have interacted with people from New Zealand, Canada, Australia. This wouldn't be anything new to us. We've done it with other countries.
MS. WARD: I would have enough confidence in that sort of Indian Health Service size and structure. I don't know enough about Mexico. I don't know about -- if we went off into some of those areas, we would be I think delaying the report months, because I just can't say. I understand Mexico has done something.
I have enough confidence about the Indian Health Service system and their adaptation to rural and isolated areas that I feel comfortable with that as a recommendation.
DR. IEZZONI: I agree. I think that we limit ourselves to that. So maybe we could pull that recommendation up into the infrastructure area, or repeat it, phrasing it slightly differently, because I think that it is an infrastructure issue.
MR. SUMME: A more narrowly focused follow-up. Instead of standard statistical analytical packages, we might broaden that to include statistical packages that are freely available on the Internet. So if you don't have the $10,000 to pass Sass(?) Institute, you can still go get X-List Stat and do something.
DR. IEZZONI: Yes, I agree, and hopefully, more will become available on the Internet for less cost.
MR. SUMME: There is a lot of free software there.
DR. IEZZONI: Exactly, there is. So Dale put in a lot here about being creative, and that is one area where we should be specific about it.
I have just been informed that we may not have the Healthy People 2010 person to talk to us until 1:00 p.m. I'm just seeing if we can check to see if she'll be ready at 12:50 p.m. I'm concerned because we the GW people or person coming at one. But I don't feel that we can kind of rely on staff to draft this recommendation. I think this subcommittee really has to be involved with the recommendation. So let's see if this person can come at 12:50 p.m. So why don't we skip over the Healthy People 2010 recommendation right now on page 21.
And let's talk about the more flexibility with block grants recommendation that starts on the bottom of page 21, and goes into the middle of page 22. This is kind of the recommendation that pertains to everybody in the health care system, the 50 contiguous states and Hawaii and Alaska and everybody else. I think we still need to make the case.
Elizabeth, comments on that recommendation?
MS. WARD: No, I think we just have to keep saying that over and over again. You could say that every other state in the country is asking for the same thing. This isn't unusual. Everyone wants more flexible dollars to take into one of these individual grants, because it's the individual grants that have created all of our categorical-related data problems.
DR. NEWACHECK: One of the questions is how much flexibility does HHS have in making these monies flexible? Because a lot of categorical grant programs have specific legal requirements or statutory requirements about how they can be spent, and there is no flexibility unless there is a waiver or an amendment of the law. I'm not sure how much we can expect to occur here.
MR. HITCHCOCK: Mike?
DR. MILLMAN: The MCHS block grant is very flexible. The issue there is are you going to trade off information for services? There is, I believe, a 15 percent administrative set aside. We don't have restrictions on what software or which hardware or whether you can use it for staff or not.
The issue, as I understand it is a lot of CDC categorical programs have very specific software and reporting structures. That's an issue. Because of that, there is this investment guide process for integrating data that is now available. The problem is not many of the states have taken advantage of that, because I don't think they think that the level of effort is going to be worth it for them. They would like to include WIC in that where it has been possible, and that's very much off on its own side. But that's a different department in HHS.
It's not clear to me to what extent at the least the territories have some these problems with the CDC grants. I know they don't. In fact, we have given them some new STRANDS(?) money to do specific things in addition on top of those block grants.
MR. HITCHCOCK: What is STRANDS?
DR. MILLMAN: That's the thing that Lynnette --
MR. HITCHCOCK: What is it?
DR. MILLMAN: They are competitive for special projects. They recently got some new money to do some things.
DR. STARFIELD: Well, I think it's maybe not really flexibility we're after, which is probably an oxymoron in the context of these grants, but maybe more creative use of.
DR. IEZZONI: Well, one of the things that we specifically talked about, and Dale I might have missed it in what you wrote here was that different block grants have little, tiny pieces of them about developing information systems. We had talked on the conference call about seeing whether the monies could be pooled across those block grants and try to think about developing a single information system, rather than having to develop all of these different requirements to address CDC concerns, et cetera, et cetera.
So I think that we need to make a specific recommendation or a specific note about funds through block grants that are specifically targeted towards developing information and data.
DR. NEWACHECK: I guess I'm a little confused here, because a block grant has flexibility already built into it. That's almost by definition what it is. I think what we are really talking about here is categorical programs. They typically don't have flexibility.
DR. IEZZONI: We need to have the correct language.
DR. NEWACHECK: So this recommendation as it is written says we should encourage efforts, blah, blah, blah, which allow a portion of certain block grants to be used. We need to have another sentence here that says HHS should further investigate whether or not flexibility can be added to existing categorical grant programs.
DR. MILLMAN: There is a process. I think problem is they need some technical assistance maybe in putting together a proposal for how to do that. It may be good to reference that there is this process that exists. The problem is you need enough resources and expertise at the jurisdiction level to be able to submit a proposal that makes sense.
MR. HITCHCOCK: Our block grants really aren't classic block grants. They come with all sorts of strings attached to them, unfortunately.
DR. IEZZONI: So that is kind of contradicting what Paul said though.
MR. HITCHCOCK: Yes, I agree with what Paul is saying in terms of what a classic block grant is. You give X number of dollars for a certain topic, with virtually no strings attached to it. But there were so many strings attached to the department's block grants now, they really resemble categorical grants, and they are actually closer to formula grants.
DR. NEWACHECK: A block grant with strings attached.
MR. HITCHCOCK: A formula grant with strings.
DR. IEZZONI: All right, then maybe we should just add a phrase saying block grants, with a variety of various requirements.
Barbara, it looks like you wanted to leap in there.
DR. STARFIELD: No, I do want to maybe change the word "flexibility" to creativity or something.
DR. IEZZONI: Okay.
MS. WARD: I think we have had someone from CDC at our big meeting talking about that. They have now recognized they are part of the historical problem. They are trying to write that flexibility into the categorical grants. It's true, the block grants also have a lot of expectations tied to them, but they have this much more flexibility than the categorical.
But I have never heard that there is an external constrain on CDC. They can't add more money to what states can get, but they are trying to give states -- and they recognize that they have got to have some integrated data systems, and they are trying to write those grants.
DR. IEZZONI: Well, then putting a recommendation in here would support what the CDC is already doing, which I think is often a good thing to do.
MS. WARD: It may mean at the local level, taking some dollars out of a direct grant to someone else to do something, and put it into your data systems. I think the other comment is also accurate. People have to be adamant about negotiating those kinds of things from a position of strength with CDC. So they have to be able to have that background to push back when they get those grants; the way they write the grants.
DR. IEZZONI: Great. We understand that the person is coming to talk to us about 2010 at 12:45 p.m. We are hoping that she will come at 12:45 p.m. So we'll skip that one.
MR. HITCHCOCK: Last time she was in costume, remember?
DR. IEZZONI: Yes, I do. She had yellow feather.
So let's go on to the final recommendations, which start on page 22. So on to 23. I know, Barbara, you said that you had something that you wanted to say about 23.
DR. STARFIELD: Yes, the very last sentence. It doesn't have anything to do with the report, but I don't think we can obligate the subcommittee to do something that changes its work plan from year. I think we should take out that last sentence.
DR. IEZZONI: Okay. And we had talked about having the last paragraph actually be the one that Paul is planning to craft for us about cost.
Thoughts about the final recommendations, page 22 and the top of 23, basically recommending that these folks have a place at the table whenever discussions are happening that involve them. It does need a preamble. Had you any thoughts about the preamble, Dale? What were you thinking about putting in there?
MR. HITCHCOCK: I really wasn't sure which way we were going on that. My language is sort of couched a bit there. I'm not sure whether we were talking about actually folks who could represent the actual people from the insular areas, or do we want people from the insular areas who are involved in some way in policy decisions for data collections? I know which one I prefer, but I just don't know operationally what we can expect here.
DR. IEZZONI: On the conference call we had talked about is it the organization of health officers. That's specific, but that wouldn't include the Virgin Islands or Puerto Rico. Hortensia, you're good at these kind of things, for having people have a voice.
DR. AMARO: I was going to suggest that I was disappointed that the principles that everybody at the meeting had been so enthusiastic about, at the hearing, were taken out. So I was going to suggest actually that this last set of recommendations really speaks to the issues of inclusion and equity and voice. And that maybe if we don't want to have them as an introduction, that some of this text might be able to be revised to be used as an introduction to this section, because they do speak to those issues, which then are followed by recommendations.
DR. IEZZONI: Hortensia, there was a very extensive discussion on the conference call before you were able to join us last week about these three points. I think that there was a little bit of discomfort in having them articulated exactly as you see them here in this subcommittee's report. We had talked about kind of keeping the general purport of them, but making some of the language a little bit less politicized.
So I think this is a lengthy discussion. How do people feel about Hortensia's suggestion here?
DR. NEWACHECK: The suggestion would be to incorporate a paragraph then?
DR. AMARO: Some of these points that we had here before. For people who weren't there, these three issues came up a lot as themes in the testimony. At the end of the testimony I sort of did a summary of the things that we had heard from people. We heard a lot from people -- and maybe not these words -- but really the theme of people feeling like they needed to determine things for how things fit locally, to be included in meetings, and as part of decision-making.
So they sort of really I thought, were overarching themes of many of the things that people said. And so had made the suggestions that they be sort of included here, but that instead they could get incorporated into a paragraph introducing these things.
DR. NEWACHECK: Yes, I was one of the people who was commenting that I thought that maybe it was inappropriate to have this here, primarily because we are a data committee, and this seemed to be more of a political statement about our values and concerns and that. I think what we ended up deciding as a committee is that we wanted build in the recommendations surrounding these concepts, which we did, I think.
For example, two are right there, but not to use these words necessarily in a way that might be viewed as perhaps as we're trying to be more of a political committee rather than a data committee. So we sort of kept the recommendations, but toned down the language a bit. But I don't see any problem with having the concepts as part of an introductory paragraph.
DR. AMARO: Maybe we can work on something like that. I mean regarding the political issue, we different perspectives on it, but there is probably nothing more political than our presence in these terrorities. So how we can suddenly divorce politics from this is kind of something I can't imagine.
But I understand what you are saying, and I think we can work with the language to do an introductory paragraph that conveys the ideas and the themes that were sort of true to the discussion, but maybe in ways that are more consistent with the rest of the language used in the report.
MR. HITCHCOCK: Well, we need a preamble for sure. So if I can get help from somebody on this, whatever the subcommittee wants to do, we will do it.
DR. AMARO: Do you want to try it, since you were the one who objected to that language.
DR. NEWACHECK: I actually am working on one right now. Why don't you try it?
DR. IEZZONI: Why doesn't Hortensia try drafting it, with Paul being an editorial consultant after the fact.
DR. AMARO: To keep me in check.
DR. IEZZONI: Elizabeth actually also had some views on this.
MS. WARD: I would add that I think the agencies whose activities and behavior we are trying to encourage to change, are also very well aware of the politics. This isn't a mystery to them either. What we want to do is give them some practical data behaviors to engage in, rather than a repetition of what that political -- but I agree, we don't want to look like we are so naive that we're totally divorced. That was the compromise we were trying to get to.
DR. AMARO: I think that will work.
DR. IEZZONI: So Elizabeth will also be an editorial consultant on this.
MS. WARD: I'm not sure Hortensia needs both of us.
DR. NEWACHECK: We are all going to review this when it's done, right?
DR. IEZZONI: We'll talk about procedures for this. Paul, did you have more comments on this? Barbara, more comments?
DR. STARFIELD: No.
DR. IEZZONI: Elizabeth, any more?
DR. AMARO: I'm sorry, I did have a couple of suggestions. There were a couple of places where suddenly in the recommendations we used "to the extent possible." I think that is sort of taken for granted, that it almost says this isn't that important, so if you want to ignore it. I would just scratch that. I think obviously these are recommendations. We'll see what happens with them. I think that can be scratched.
And also that first recommendation, I had a hard time following it.
DR. IEZZONI: Which one are you referring to?
DR. AMARO: The first one that is a voice at the HHS data policy table. Just the language was a little bit difficult to follow. It looks like there is something missing there. You might want to look at that.
MR. HITCHCOCK: You are right, this doesn't read well. Maybe if you cross out HHS too, maybe it would just read better, but I'll have to restructure it. But it's a question like I alluded to earlier. Do we really want representatives from the islands, or do we want people -- I guess I'm asking you how would we direct that recommendation, to actual islanders basically or people like Pete Hola(?).
DR. IEZZONI: I think they should tell us what would satisfy them as being at the table. If they feel that they physically want to be there -- but if they want to delegate it to Poa(?) or whoever would we the appropriate folks from Virgin Islands and Puerto Rico, obviously Puerto Rico and the Virgin Islands are not going to have the same travel constraints that the people from the Pacific Islands will.
MR. HITCHCOCK: So in other words the recommendation should be something to the fact that HHS should consult with --
DR. IEZZONI: With them about who would be appropriate representatives, or what structure would allow them to feel that they had appropriate representation, and what persons.
DR. AMARO: Maybe some options for representation.
DR. IEZZONI: Yes, different options, involving the people from the territories and areas, deciding absolutely. And the poor guy who traveled three straight days and arrived and then turned around and went back. I mean people are probably not going to be willing to do that.
MR. HITCHCOCK: He was young and had a lot of energy.
DR. IEZZONI: He was young and had a lot of energy, but nonetheless he was wiped out.
DR. MILLMAN: This assumes that there is like one table where these decisions are made. I think maybe the preamble can talk about -- it's so many micro decisions that are involved here. Sometimes it's not even a table. The sampling frame for HIS is not --
DR. IEZZONI: I think we were talking about at minimum the Data Council. Didn't we talk about the Data Council in the first place that you start, because that's the place that coordinates data policy across the department.
DR. AMARO: Lisa, do you think that then we should be more direct in a recommendation, or we should leave it vague a little bit?
DR. IEZZONI: We haven't asked the folks from the territories what they would want.
DR. MILLMAN: And we don't have the states, for example, really sitting in at the Data Council. But if there is a specific proposal -- and Olivia heads up actually a subcommittee of the Data Council that is dealing with a lot of similar issues -- maybe a specific propose for participating.
DR. IEZZONI: But there has to be some mechanism to get issues that are pertinent to these areas to the table. It may not be, like you said, Mike, the 50 states don't each have a representative, but they have a way of getting their views known. They have the Governors' Council, they have a variety of different vehicles by which the department finds out that they are concerned about things.
DR. MILLMAN: I think that should be said. You are saying it clearer.
MS. WARD: Yes, that's the most clear we've had that comment.
DR. IEZZONI: What did I just say?
DR. MILLMAN: The point at which issues are discussed in the department.
DR. AMARO: Either as sort of representatives of those areas, or even as individuals who are asked to participate, who then may be able to inform whatever gets discussed around the table. Often at many of these meetings, people may not be representing their states, but they bring information that informs the process based on what's happening in their state. But that perspective is missing both formally and informally, because those folks don't get invited as scientists or practitioners.
MR. HITCHCOCK: I wonder if organizations like the Association of State and Territorial Health Officers sort of exclude these folks in deliberations as much as we seem to be doing. One would think that they would be covered in some these umbrella associations, but maybe not.
DR. IEZZONI: Okay, so is there enough there, Dale, that you can craft some language around that? I saw Carolyn taking extensive notes.
MR. HITCHCOCK: If Hortensia and Paul and Elizabeth could help with the preamble paragraph, that would be great.
DR. IEZZONI: Why don't we do this? We have given a couple of people some writing assignments. Do people at this point have more -- are there more areas? Dale, we have gone through the recommendations. Are there other areas where you specifically want help at this point on the report?
MR. HITCHCOCK: I really don't think there are, other than we need to talk a little bit more about the review process.
DR. IEZZONI: I was just going to do that. What I was going to propose is let's talk about the review process right now, and then let's take a break for 20 minutes, during which people who have writing assignments, would get together and write. Then we'll come back to the table and hear what they think. Then we'll finalize that, and move on to Medicaid managed care. How does that sound?
MR. SUMME: Lisa, can I raise a point out of order here with respect to the last recommendation? Does the committee want to consider recommending uniform treatment with respect to the collection of statistics and data from these areas? In other words, their data is collected by some federal agencies and components, but not others. Is there value in having that uniform?
DR. IEZZONI: I think we want census data, but I'm not sure beyond that, that I would actually feel comfortable imposing uniformity until I hear from the territories that that's what they want, or the areas. I think because of the issues that I raised earlier, for example about the priest, the beetlenut example -- Dale, thank you for expanding that quote. That they have added beetlenut chewing to the birth certification, because it's a particular issue in a particular island, and they need to have that information to relate to problems with newborns.
So I think I would feel uncomfortable as a committee imposing uniformity, except for census. I think we do need to see whether -- and you have a recommendation in there about census already.
How do other committee members feel? Barbara?
DR. IEZZONI: I agree with Lisa, because we do have this statement in here about the three territories that are separate countries, and they have their own reporting requirements to WHO. That's a little cryptic in there. I wasn't exactly sure what it meant, but to me it made the point that we really can't impose standardization.
MR. SUMME: Yes, but even in terms of the definition of what standards -- you say you have statistics for the US. What does that mean? Because in some cases, some of these people are in, and in other cases they are not. So for instance at AHCPR, NEPS(?) does not go to any of these insular areas. Whereas, if you go to NCHS, some of the surveys do. So there is variability in terms of whether these things are covered or not covered. Do you want to stress that.
DR. STARFIELD: I do have it clear that census is collected in all of them, except the three independent nations?
MR. SUMME: Yes, but there is some question about periodicity.
DR. STARFIELD: They are not on the same periodic schedule?
MR. SUMME: No.
DR. STARFIELD: Oh, I don't think that comes through clearly in the report. Could you make sure that's clear?
MR. HITCHCOCK: All right.
DR. NEWACHECK: Is the current population survey done in those same areas, or are you talking about the decennial?
MR. HITCHCOCK: I don't remember, Paul, to be honest.
DR. NEWACHECK: The CPS is what is used to allocate a lot of resources.
MR. HITCHCOCK: I'll clarify that whole question about census.
DR. AMARO: But maybe there could be a recommendation that kind of combines both of your recommendations that there should be some body that decides what will be the minimum data that will be included, and which points of data from these areas will be included in sort of US data.
But that process of decision-making should include representatives, so that they have a say, but that we should make a decision, which health data are going to include those entities and which aren't, so that it is systematically done over time. But they need to be included in agreeing on which ones those will be.
DR. IEZZONI: There will obviously be resource allocations. I mean one of the reasons NEPS isn't done in some of these places like Puerto Rico I suspect is because -- do they have a Spanish version of NEPS?
MR. SUMME: I don't know for sure. I suspect that they do.
DR. IEZZONI: I don't know that you should suspect that they do, because I don't think they do. I think that the Spanish NHISs have been a special initiative that have required special -- and so there probably isn't. So I think that we should make a recommendation though that if places are excluded from specific reports, there should be at least a footnote to the report to clarify who was included, and who was excluded. Because you're right, it could be confusing to people if some places are included in some reports, and included in others.
I don't know, Aaron, are the Indian nations included in all of these standard reports?
MR. HANDLER: Basically, whenever NCHS conducts a sample survey, the sample is too small to be representative of the Indian population. That's one of the problems that we're facing daily -- the Health Interview Survey, Health Examination Survey. What a lot of organizations take for granted, don't represent the Indian population.
DR. IEZZONI: But are the Indian populations, are the street addresses and so on included in the primary and secondary sampling unit?
MR. HANDLER: Yes, but the problem is that the Indian population in the United States is about half of 1 percent, and you have to oversample. You have to get an oversampling to get a representative sample. If you just go straight sample, you will never pick up enough to get national data, let alone small area data.
DR. IEZZONI: That is, even if people from the Marshall Islands for example were included in some of the surveys, there might be three people in it, given the sampling frame for even something as big as the NHIS.
MR. HITCHCOCK: In the NCHS reports typically you have a statement about how the results only apply to the coterminous I think the word is, United States plus Alaska and Hawaii.
DR. IEZZONI: Then why don't we not make a recommendation around this, because it sounds like the subcommittee feels a little uncomfortable about recommending standardization, except around --
MR. HITCHCOCK: It also could be limiting. There is the potential they are talking about a small HANES now, an RV HANES.
MR. HANDLER: There has to be a survey conducted on site for each of the outlying areas, specifically just targeting those areas. They can't be part of a national survey. They won't be representative.
Another feature, talking about whether there is a Spanish version of questionnaires. Language should be a problem, at least the Spanish language shouldn't be a problem at all. I know my daughter works for a contract to the National Cancer Institute and she herself is designing the skip patterns on a questionnaire, and it is being translated into Spanish, and will be conducted in Spain, so language is no problem.
DR. IEZZONI: It isn't a problem. It's just that it is not done.
MR. HANDLER: Right, that's the problem. It's not done.
DR. IEZZONI: Exactly. It isn't technical or that they can't do it. It's just it's not done. They try to get English speakers in the Spanish speaking household to answer questions.
DR. STARFIELD: A couple of things. First of all, most of the NCHS surveys are cluster sampling, and so you are never going to get people from these areas. Second of all, we were talking about the lack of clarity on the census. That's in Table 8. Even Table 8, as great as it is, is still a little unclear, because if I read this, it looks to me like only Puerto Rico has the regular census, where everything else is technical assistance. There should be a 14 on all the technical assistances, not just the first I think.
And I guess I was wrong. There is no census. I said there was no census in the three independent countries, but it's more than that, is that right? It's only in Puerto Rico.
MR. HITCHCOCK: Remember, we had invited someone from Census to come, who couldn't make it, because he was actually out in these islands. I think what I need to do is run this by the person to make sure that everything is accurate.
DR. STARFIELD: Right, and add the CPS as well.
DR. IEZZONI: All right, Jim, sorry for raising the issue. It generated an interesting discussion.
Here is the plan. It is 11:25 a.m. at this point. What I would propose that we do is maybe reconvene at 11:45 a.m., and spend 15 minutes looking at the language that people have drafted for these two couple of areas, and finalizing it. But why don't I suggest to you, so you can be thinking about it in the back of your head how I think we should proceed at this point.
I think that Dale needs to revise the report once again based on today's discussion. And then, Dale, I would like that done, if at all possible, within a week, if possible, because we've got to get this out to the participants.
MR. HITCHCOCK: We have Data Council next week, which takes up a large chunk of my time.
DR. IEZZONI: Okay, then within two weeks, because what I would like to do, Elizabeth, is take our recommendations to the full subcommittee without having gotten complete feedback yet from the insular areas' representatives. But I would have liked for them to have had it for a while. So if they had urgent comments, they could have gotten them back to us by then.
I don't think that the full committee meeting is until the third week in June, is it? It's like the 22nd, 23rd. So Dale, if we could try to get the report out to all the participants, including the federal agency folks, and the folk who came and spoke to us in July, if we could try to get that out to them by May 20th or so.
MS. RIMES: Do you want your name on the cover letter?
DR. IEZZONI: Yes, and I'm happy to personally sign all those cover letters, like I did for the invitations, if you can get them to me.
Tell people that the recommendations will be presented to the full committee in June, but that we will not be finalizing the report until after we get their comments. And we would like their comments by say the first week in July. So that would give them maybe six weeks to comment to us. Then Dale, if you could revise the report by say the third week in July, then maybe I could do some final editing on it, and we could send it out to the full subcommittee, and people can just say yes or no.
What I would like to do, Elizabeth, at the full NCVHS meeting is have the NCVHS approve the recommendations pending our subcommittee's approval of the final report. We have done this before. So hopefully this won't generate a huge amount of controversy, and so hopefully, we'll be able to do that.
Does that sound like a reasonable time table, Dale?
MR. HITCHCOCK: Yes.
DR. IEZZONI: Now how physically will you transport to some of these places? Do they have Federal Express? Because we have heard from Barbara, like the rest of us haven't opened our e-mail, because it came too late, but we hear from Barbara that e-mail might not be the best way to transmit this report.
MS. WARD: It would be by regular mail, wouldn't it?
DR. IEZZONI: Let's explore. There might be a diplomatic pouch or something that it could go.
MS. RIMES: There were a couple of different ways they went.
DR. IEZZONI: Because the invitations did go out fairly expeditiously. Lynnette Araki organized all that with Roy Lynn and the Department of the Interior.
MR. HITCHCOCK: Remember, they had an IOM meeting, and everyone was there.
DR. IEZZONI: Ah, that's right. I did have to sign them for that.
MS. RIMES: Those were the individuals. There were also formal other ways to do it too.
DR. IEZZONI: But this is the timetable. So basically, by May 20th -- I'm not sure what day of the week that is -- but by May 20th get the final draft out.
MS. RIMES: Thursday.
DR. IEZZONI: Well, then by the 21st, which is Friday get the final draft out to the full subcommittee, subcommittee staff, federal agency representatives, and the people who attended the insular areas report. Tell everybody in the cover letter that it will be presented on June 22nd, so that if they have immediate comments, get back to us, Carolyn or Dale -- maybe get back to Dale.
Dale, would you be willing to be the point person on that?
MR. HITCHCOCK: Sure.
DR. IEZZONI: Okay, get back to you immediately. And Elizabeth, you and I can work on if anything pops up. I'll be out of the country starting June 12th, but before that. Then we can ask for their final comments by the first week in July, and revise it by say July 20th or so, and get it out for final comment.
DR. NEWACHECK: Lisa, I had a question about the process of these recommendations. They are written now as subcommittee recommendations.
DR. IEZZONI: Yes, it will be the full committee recommendations. The subcommittee did the work, but the full committee -- thank you for pointing that out. That's an excellent pick up. Yes, the full committee will be making these recommendations. The report will come from the full committee through our subcommittee.
So why don't we join together again maybe 11:50 a.m.? That will give people 20 minutes. We'll work from maybe 11:50 a.m. finishing the language for these two things for the insular areas. Then let's just spend a couple of minutes at 12:00 p.m. getting from Carolyn, an update on what the process has been on the Medicaid managed care report, and getting our heads around what we have to do this afternoon. Because this afternoon there is actually a lot of work to do.
People who are not on the Medicaid managed care conference call last week, most of you weren't -- it was kind of Barbara, me, and Kathy, and Vince briefly. And you were briefly on it. So we need to get a lot of input from people. There was a lot left hanging at the end of that conference call. And we've got the contract language we've got to discuss this afternoon too. Then we've got the person coming to talk to us about Healthy People 2010 at 12:45 p.m.
Why don't we break and reconvene at 11:50 a.m.?
[Brief recess.]
DR. IEZZONI: We are reconvening. So we're reconvening about four minutes early. So Dale, do you want to read what Hortensia wrote?
MR. HITCHCOCK: I'll be happy to, yes. "The implementation recommendations in this report, as well as other activities to improve the availability and utility of data in the insular areas and territories will require their full and active participation. Yet, there is no current mechanism within HHS that facilitates such participation and input. An inclusive approach is needed on the part of the federal departments to address data needs of Puerto Rico, the Virgin Islands, and the Pacific insular areas."
It's very straightforward, and I think it captures the principles.
DR. IEZZONI: Thank you. Excellent. Now, Paul, you had a writing assignment as well.
DR. NEWACHECK: So mine would be probably the last paragraph or near the last paragraph of the report. This is about the resource requirements. It would read, "Finally, the committee recognizes that implementing many of its recommendations will require a commitment of additional resources. We have suggested mechanisms for spending existing HHS grant funds more efficiently, including more flexible use of block grant and categorical funding streams. Nevertheless, the scale of need, especially for infrastructure development is such that additional HHS resources will be required to implement these recommendations. Without these resources, the Pacific insular areas, Puerto Rico, and the US Virgin Islands will continue to face significant barriers in addressing critical public health needs."
MR. HITCHCOCK: Wonderful.
DR. IEZZONI: Good. Barbara, Hortensia?
DR. AMARO: I love it. I think it's really clearly stated. I would maybe suggest a last sentence that sort of ties why having what you just stated, without the funds, they wouldn't be able to develop the infrastructure. Why that's a problem for us overall. Sort of the issue that we start with at the beginning of the report, of why this is relevant. Do you see what I'm saying? No?
DR. IEZZONI: Yes. So why don't you try and suggest something?
DR. AMARO: Something that would refer back to our responsibility. That's what I'm thinking as a good tie back to the beginning. Just a comment on that. I'm trying to think at the beginning if there is anything related to that.
DR. NEWACHECK: Well, there is a general statement here that says that --
DR. AMARO: Has varying degrees of responsibility.
DR. NEWACHECK: Right, but it's not very catchy.
DR. IEZZONI: Why don't we take Paul's proposal. And Hortensia, if you can think of a sentence later, because I think that we have talked about the responsibility part. I would hate to kind of end with something that is meant to make people feel guilty. I think that we want to end in a positive way that makes people understand that action is necessary, but not driving it by guilt.
So see if you can come up with a last sentence. But for now, do people feel comfortable with what Paul will rip off of his page and give to Dale?
DR. AMARO: I'm trying to understand what you said. Are you thinking that what I suggested induces guilt?
DR. IEZZONI: No, no, I'm not. It's just that we are going to have to make sure to phrase whatever we say in a way that makes sure that people --
DR. AMARO: I was just sort of trying to close the loop to well, why should we be concerned about what goes on there? Well, it is our responsibility. And bring it back to the beginning where we kind of start with something like that.
MR. HANDLER: There is one phrase that Paul had that I heard it and a red flag went up. That's money should be used more efficiently. That implies that somehow money is getting wasted currently.
DR. IEZZONI: That's true. We should maybe revise that word.
DR. STARFIELD: Just take out the word "more."
DR. NEWACHECK: What's wrong with more efficiently? Unless we are assuming that government expends its money at the peak level of efficiency in all case, it can always be true though.
DR. STARFIELD: You don't need the word "more" though. Just say efficiently.
MR. HANDLER: Like a $200 hammer or something.
DR. IEZZONI: If you take Barbara's suggestion and remove the word "more" --
DR. NEWACHECK: I think it will create more of a problem.
DR. IEZZONI: Say the sentence again.
DR. NEWACHECK: We have suggested mechanisms for spending existing HHS grant funds more efficiently. Then it goes on to say, including more flexible use of block grant and categorical funding streams.
MR. HANDLER: Maybe effectively, rather than efficiently.
MS. WARD: I'm having the same employee response that he's having, and it's a knee jerk response that is hard to get rid of. I think what you are talking about mostly is we aren't expecting a lot more money, if any more money. What we are hoping is that there is more flexibility about the money. That does not necessarily acquaint in a bureaucrat's mind as more efficiently, I think.
We could say we would like in the best cases that more money were made available to these areas. I think we should say that, that they are getting cheated. But we also want how that money is doled out to be more flexible.
DR. NEWACHECK: Which leads to greater efficiency.
MS. WARD: Yes, that's fine.
DR. IEZZONI: So, Paul, can you read the offending sentence once again? And let's see whether we can put the word "flexibility" in there as well as the word "efficiently." Maybe we can have both of them.
MR. HANDLER: I think effectively is better. That's neutral.
MS. WARD: When I get a CDC grant, they have given it to me in the most efficient fashion they can. They tell me I can have $5,000, and they say, with that $5,000, you must do. I want to say to them, leave me some flexibility about your $5,000, so that I don't just meet your needs, I also meet some of my needs.
DR. IEZZONI: Okay, so read the sentence again, and see whether we could substitute the word "flexibility."
DR. NEWACHECK: "We have suggested mechanisms for spending existing HHS grant funds more efficiently, including more flexible use of block grant and categorical funding streams."
DR. IEZZONI: So your bureaucratic hackles were not raised in that reading? All right, so you're okay with the sentence?
MR. HITCHCOCK: Can we suggest more flexibility might lead to --
DR. IEZZONI: Why don't we use Paul's -- Hortensia, are you working on the sentence?
DR. AMARO: I'm seeing if there something here I can refer back to.
DR. IEZZONI: Or we could say given the federal responsibility for these areas.
DR. AMARO: Yes, that does it for me.
DR. IEZZONI: How about the phrase for the last sentence? Given federal responsibilities in the insular areas.
DR. AMARO: You're saying start with that?
DR. IEZZONI: Yes, start with that.
DR. AMARO: At the beginning.
DR. IEZZONI: At the beginning of the paragraph. Have it be a phrase somewhere that leads into --
DR. NEWACHECK: Well, I think we need to have more than a phrase. It ends right now by saying without these resources, these areas will continue to face barriers in addressing public health needs.
DR. IEZZONI: What is your first sentence?
DR. NEWACHECK: "Finally, the committee recognizes that implementing many of these recommendations will require a commitment of additional resources," given federal responsibilities. We can say that if you want.
DR. IEZZONI: All right, Paul, you'll work on it. So Paul and Hortensia will work on this. But Paul's paragraph is approved otherwise, and the words "efficiently" and "flexible" are in the same sentence.
Then let's say that the effort on the insular areas report is officially done for the public forum today. Dale, we owe you tons of thanks. You've done yeoman's work on this. We are very happy with the product. It's not over yet, so don't think you can go home yet. But we really thank you.
Hortensia, you were the one that came up with this idea, and I think it's been great. I think you have produced a really interesting report, that hopefully will be read by some people in positions to make things happen.
DR. AMARO: So the next step is that we will get input from the areas, the people who came? We'll try and be responsive.
DR. IEZZONI: Right. As I said, by July 1st we'll want their comments.
DR. AMARO: The committee will look at it, give their input, and then it will go to the secretary?
MR. HITCHCOCK: Yes.
DR. IEZZONI: Well, I think it will go to the Data Council and the secretary.
MR. HITCHCOCK: Yes, that's the way it usually goes.
DR. AMARO: I just wanted to say that I'm going off the committee in June, and I feel good about the fact that we were able to work on this. I think it's an issue that is important for us to address. I hope that the committee continues to think how in its work, it can also apply some of these recommendations to itself in being inclusive in terms of taking into account these issues.
So that might be a thought. I don't know, maybe we don't want to have that last sentence. We might want to sort of set an example of how we start to take our own recommendations with regard to our purview of work.
DR. NEWACHECK: Plus the one about more resources for us too.
DR. IEZZONI: Okay, great. Let's take the next 10 minutes or so until 12:10 p.m., and Carolyn, can you review with us where we were at the end of the conference call last week. And what has happened with Anne Markus since then? We don't have any new documents from her. So you can just tell us what we have, and what we'll be talking about this afternoon?
MS. RIMES: As a result of the conference call, we pretty much went through the report and there were a number of comments. She has not done a revision of the report yet, because we need to sit down, and I volunteered to help on doing some of the writing so that it's a little less legalistic.
What you do have in front of you are some revisions to the recommendations, which I would really wish that you would look at. They reflect some of the comments that came from the conference call, and some of the work that she has done subsequently. And they are very dependent upon using the contract and the contract to the states, the draft contract language that is being proposed.
So take a look at the recommendations. Anne is here for guidance from the subcommittee. We've taken it about as far as we can take it at this point, I think, until the committee does a final work through in a series of recommendations. Then we can go back.
DR. STARFIELD: Can I just make a comment, before Anne comes? I want to make it now. A lot of work has to be done on the report. As far as the recommendations go, I think she has laid it out now in a very positive way. In my view, the first three paragraphs are terrific. But the recommendations, some of them are still extremely naive, especially with regard to the privacy issue. I think is this something the subcommittee itself is going to have to grapple with.
DR. IEZZONI: I don't to be hectoring here, but the subcommittee has, at numerous occasions, punted working on the recommendations for the Medicaid managed care report. We have had many subcommittee meetings where people have kind of looked tired and run down and listless and pooped out. So we have said, well, we'll do it the next time we get together.
So Anne Markus was really kind of alone in trying to come up with recommendations, and I think this is our last opportunity, just like the insular areas report was our last opportunity. This is our last opportunity really to look at the recommendations for the Medicaid managed care report.
Kathy Coltin, who should be coming at noonish will be presenting the recommendations to the full committee in June again in my absence, and will probably have the same kind of arrangement that Elizabeth has agreed to where we present recommendations to the full committee in June with the understanding that the GW people will still be revising the final version of aspects of this after the June meeting.
So we really have to do this, this afternoon folks.
DR. NEWACHECK: It seems to me this really is our responsibility.
DR. IEZZONI: It is our responsibility. That's why I say, I don't mean to be hectoring of us, but it's our fault that we are at the place that we are, because we just haven't done it. So we have to do it today. I'm sorry Vince isn't here. I guess he is ill. Because he has the perspective of the long-term care and chronic illness. I'm delighted that Hortensia is here, because of the mental health and substance abuse angle, and the race and ethnicity issues that we really need to deal with here. So we need to do it this afternoon.
The meeting goes until 3:30 p.m. today? So we'll try to make sure we get out. If we have time at the end of the meeting, we'll talk a little bit about our plans for the next initiative.
Hortensia and Paul, did I see you exchanging sentences?
DR. NEWACHECK: We're working on the last sentence.
DR. IEZZONI: You're working on it? You're still not will to commit?
DR. NEWACHECK: Well, do you want to read this?
DR. AMARO: Okay. Given the existing federal responsibility -- was that your phrase?
DR. IEZZONI: I think it was probably given existing federal responsibilities.
DR. AMARO: Given existing federal responsibilities, we encourage HHS to take effective and proactive action to improve the availability and utility of data on public health chronic illness and disability in these areas.
DR. IEZZONI: Elizabeth, what do you think?
MS. WARD: It's fine.
DR. IEZZONI: Barbara?
DR. STARFIELD: Fine.
DR. IEZZONI: Go with it. So you have your final, final comments on the insular areas report.
Kathy, welcome. We're so glad to have you here. Here is the plan. We're going to adjourn for lunch right now, but reconvene at 12:45 p.m., at which point we're hoping that we'll have somebody here to talk to us for 15 minutes about Healthy People 2010 in the context of the insular areas report. Then at one o'clock Anne Markus will be here from GW, and we'll talk about Medicaid.
Okay, thanks folks. We'll see you in 45 minutes.
[Whereupon, the meeting was recessed for lunch at 12:03 p.m., to reconvene at 1:00 p.m.]
DR. IEZZONI: Let's reconvene our subcommittee meeting. Deborah has been in a meeting all morning, but she has graciously agreed to be pulled out 15 minutes early or whatever, to come and talk with us. So Deborah, just let me lay out what the issue is.
The issue is we are preparing a report to the secretary about data needs for the insular areas and territories. And we have a placeholder recommendation in it relating to Healthy People 2010. So can you tell us how Healthy People 2010 is addressing issues relating to Puerto Rico, the Virgin Islands, and the Pacific Islands and territories, and what you think might be areas in which the subcommittee could usefully make recommendations?
MS. MAIESE: I would be happy to do that. The first reaction that I had to this is that Dr. Satcher and the department have certainly been encouraging all states and territories to do their own versions of Healthy People 2010. As Hortensia Amaro and I were walking in, we were just beginning to talk about the fact that under contract with the Public Health Foundation, we are about to produce a Healthy People 2010 tool kit, so that states and communities and territories can all take and adapt the Healthy People 2010 model, the process, the product, as their own.
Because the whole idea here is to really use the national benchmarks as one column, but really then to drill down to a local level, and compare even perhaps neighborhoods or whole communities to state or territorial data to the nation. So I think that one of the things that we would certainly want to encourage -- and I know that during this decade, Guam has done their own version of Healthy Guamanians 2000. Now the extent to which that is still an active and ongoing process, I don't know.
We clearly include all of the territories on our state Healthy People action contact list. We have, and we maintain up on the Healthy People Website, a listing of all state and territorial Healthy People state action contacts. Sometimes if the state or territorial health official has not designated someone below he or she, we use their name. But again, as a way to encourage them to identify a staff person who can be resourceful.
Because often times when I get calls about what can we do with Healthy People, I refer people right back to where they are calling from, and say, your action contact is so and so. You should look into what you can do back at home, and use Healthy People as that resource.
So certainly one of the messages is replicating this process in the territories, and using Healthy People 2010 as a driver for action. I think as I have talked before with this committee, and the full committee is that trying to move everybody beyond assessment. Just taking the step of looking at our current situation is one good thing.
But the second good thing is to really then encourage people to go the next step, and set those targets for the year 2010, or some shorter period, if that is more politically feasible for some groups. But once again, trying to set forth the amount of change that a community believes it is possible to accomplish by a given period of time. I think again, just having targets can be a real driver of action. That would be one domain.
The second thing I guess I would talk about is, and certainly I would have to turn to our colleagues at the National Center for Health Statistics about the ability of our national data systems to be all inclusive. Obviously, that's part of what you are driving at today, because I believe that for the most part, the Healthy People 2000 baselines, as well as those that we put forward in the Healthy People 2010 draft are national baselines in the sense of the states and the District of Columbia, that they do not go beyond those jurisdictions to encompass Puerto Rico or other territories.
So I think that we really do need to turn this lens back on our data collection activities, be it those not only at the National Center for Health Statistics and Aaron Handler, of other operating divisions of the department, that we really need to begin to help produce those statistics that will enable us to truly make national baselines that are representative of all the states and the territories.
So I think that the work and the deliberations that you are doing here today will help us drive in that direction. Maybe before the mid-decade review, certainly we anticipate sort of wholesale revisions to the baselines in Healthy People 2010, just because of the introduction of new denominators from the year 2000 census. The mixed race category is obviously going to have implications for our Healthy People 2010 baselines. Certainly the conversion from ICD-9 to ICD-10 will do that.
And so we just sort of pile on the number of changes that make us believe that we are going to have wholesale revisions of the baseline. Wouldn't it be lovely if we could make an added dimension to that, baselines that are now encompassing of all population groups in the United States?
DR. IEZZONI: Deborah, when Guam did the Healthy Guamanian, can you tell us anything about their experiences in trying to do that? What the primary barriers and hurdles were that they had to overcome to be able to produce that report?
MS. MAIESE: I don't know that I could answer that question. But I can tell you a couple of things from an activity that the Public Health Foundation did under contract with us two years ago. That was really looking at state and local capacity to develop objectives. It was really looking at the data capacity.
What we found in this study was that for the most part, states were taking and making objectives based on the data that they had, which to some extent is really only looking under the lamp post. So we are really encouraging -- and this tool kit is going to be one of the venues in which we encourage states and localities to do what we are doing with Healthy People 2010, and that is to be very explicit about a data development agenda with developmental objectives.
Lay it out so that you'd know -- yesterday we did a maternal and infant progress review. A question came in from the viewing audience about maternal postpartum depression. And it turns out that I had to pop up and give the answer to this particular question about the mental health objective.
It turns out that the mental health objective on depression is development for 2010, because we really don't have national baselines. But that the caller's question really sparked me to consider well, maybe we should also say a select population in this depression objective should be postpartum women.
And so to get back to the main point, is to really suggest to territories, as well as states and localities is lay it out that you don't have this data. Use it again as a community action and driver to say to people from the Kiwanis Club or the Junior League or from a church or synagogue or mosque, we don't know. Isn't it important that we should be investing in this data collection in the next few years so that we know our local situation? So certainly this experience about where states have been has been really primarily focused on objectives where they had the data.
The other really sort of frightening finding in this study is that the overwhelming majority of data in the state plans was more than two years old. So the timeliness of this data is really I think, another issue that really continue to challenge us, particularly as we reach out to employers and community leaders to have really timely information.
DR. IEZZONI: Right. Specific to the islands and territories though, do committee members have any questions for Deborah before we begin to think about specific recommendations around this?
DR. AMARO: I just want to make sure. So currently, there are no objectives that address any of the islands or territories, or that include those populations, even with vital statistics which would be available? At least that would be the ones that would be most likely to be available. None of the objectives include those populations?
MS. MAIESE: That is my understanding, that the national and vital statistics data are only states and the District of Columbia in the Healthy People 2010 baselines.
Lisa, one other idea that I've got for the committee to consider, and again, we sort of deal with peer learning and peer exchange, Hawaii has had an active Healthy Hawaiians 2000 program. Sometimes it's high on the state health commissioner's list, and then it is lower, and it has gone through all cycles in the seven years that I have been with this program.
But certainly another way to consider is how would we sort of link between Hawaii and those islands further in the Pacific? First of all, I know Hawaii used the preventive health block grant, and again, making those conditions between where the dollars are flowing out of this department on preventive health blocks, maternal and child health block grants. And those two block grants in particular reference Healthy People.
Again, as a starting point, that may be a core nucleus of measures to work from. And then likewise, to connect the islands together might be another way.
DR. AMARO: Does your department have any initiatives that perhaps should be offered to these islands and territories with respect to either planning, applying this "state" level planning process, or any resources that they could be directed to in improving their data systems? I know that we're asking about something different, but we have been talking about it.
MS. MAIESE: Well, certainly the Office of Disease Prevention and Health Promotion is a tiny player, and we have no grant programs out of the Office of Disease Prevention and Health Promotion. Although it is something that we are exploring for the year 2001 budget, just as a new initiative.
Something that was done after Healthy People 2000 was a cooperative agreement program that went to select consortium members to further the use of Healthy People -- COSMO, the National Mental Health Association, a group focused on people with disabilities. Each of those groups got a cooperative agreement, and in turn did a sort of companion document of packing the objectives in a unique way.
So that sort of modality is something we have though about. Certainly we are encouraging all of the divisions of the department to focus on companion documents. Once again, sort of suggestion to people, slice and dice this big national document in a way that is relevant to a particular constituency. That could be island-specific.
Some people have suggested urban versus rural, and there are some underway now with particular age cohorts or select population groups. Again, I think companion documents would be another way to support this.
DR. IEZZONI: Barbara, again, on the topic of the Healthy People 2010 for the islands?
DR. STARFIELD: I just wanted to ask you, how close is the report to its final version, and what's the schedule for release?
MS. MAIESE: The release of Healthy People 2010 will take place here in Washington on January 25th, so mark your calendars. You are all invited to join us, what we promise to be a big, health promoting event of the new millennium. And so we are in the process now of going through -- actually, we have absorbed the public comments. Each of the lead agencies is bringing forward their chapters as we speak literally. Eleven of them have been turned in out of the 28 chapters.
Dr. Satcher has been going through a process of designating new lead and co-lead agencies, to once again create the infrastructure in the department to carry this initiative forward. And he has created a couple of new chapters based on the recommendations of public comments.
DR. STARFIELD: Is it under wraps still then?
MS. MAIESE: Pretty much so. I think that there will be special exceptions to some of this. And we have talked about making the objectives themselves available to states, territories, the islands to work from. So we have actually had a couple of complaints if you will, that our Website and the great big yellow book is not a manipulatable file. You just have to take it out of there.
So we are working on how to make this more accessible, particularly because there are at least a half dozen states -- Iowa is one of them -- that is doing a barn raising next month. So the states are in the modality of beginning to do their own 2010 planning too, and we'd like to support them in that endeavor.
DR. IEZZONI: Deborah, thank you very, very much. We're going to have to try to move on.
MR. HITCHCOCK: Is there any recommendation that this subcommittee would make that would help you with regard to getting the islands involved in 2010, a specific recommendation.
MS. MAIESE: Looking at the ways we can replicate this process and these products, not just at state levels, but at island level would be a very useful recommendation.
DR. IEZZONI: It's going to be really important though to involve the islanders in this, because their immediate concerns may be somewhat different from the emphasis that we have, from what we hear from them.
And of course one other thing that we're going to begin to do in the standard population template, we are following the new OMB standard for reporting. And also based on public comment, in the yellow book we had just said data not available. Well, public comment said that was insufficient. So we are actually now going to differentiate where the data has not been collected, versus where the data has been collected, but not yet analyzed. So we've got it in hand. Or the third differentiation is that the numbers are too small to reliably report.
So we are doing sort of a full disclosure on data that we have or don't have in Healthy People 2010. So again, I think that would help us. Certainly, I would envision, because Dr. Satcher has found these cross-cutting progress reviews. There was one done on Asian and Pacific Islanders a year and a half ago as a part of the Asian-Pacific Islander health care forum meeting, that we would continue to bring forward and use this document as that kind of review, to bring attention to Pacific Islanders as well.
DR. IEZZONI: That's very helpful. Thank you. I'm sorry to pull you out of your meeting.
MS. MAIESE: No problem. I'm doing 2010.
DR. IEZZONI: We really appreciate it.
We've got to move on to Medicaid managed care, but I also just want to poll the subcommittee and find out from you whether you heard something in what we just discussed that kind of grabs you as a concrete recommendation that we might make for the insular areas report around Healthy People 2010. Elizabeth?
MS. WARD: I would synthesize what she said. I think the main thing is encouraging people to do something at the local level.
DR. IEZZONI: Right, on their own local needs. I kept thinking of the beetlenut chewing and the health of the neonate. I'm sure that Healthy People 2010 doesn't have a beetlenut section in it. But for that particular territory or insular area, that's an important thing.
Hortensia, Barbara, Paul, did you hear anything, Kathy, that is beyond what Dale just said?
DR. STARFIELD: No. It's just that we really do have to say that they should use it set their own objectives. There is nothing in 2010 that is specific to any particular area, so it would be inappropriate for us to say anything that way.
DR. NEWACHECK: We may want to add something about providing technical assistance to facilitate that process.
DR. IEZZONI: Okay, that's a good idea. So use the process and the kind of idea of goal setting. So the process, the thinking about it and goal setting, but ask for technical support.
MR. HITCHCOCK: Did she say there were contacts?
DR. IEZZONI: She said that they were mailing Healthy People information to contacts in every insular area and territory. We should find out more about that.
DR. AMARO: I think this is one place where probably the kind of recommendations would be different for the insular areas versus Puerto Rico and Guam, because I think Puerto Rico at least, and to some perhaps Guam, there are data systems that could be included -- in the Virgin Islands. I'm sorry, yes, that's what I meant. That could be included for some items.
So a recommendation to the Healthy People 2000, there are two levels that I see. One is to the Healthy People 2000, is starting maybe to include a section that includes goals set by those territories that are either developmental or actual data that they have from data systems, that they can set.
Like I'm thinking Puerto Rico for example is not included. They have got lots of data that could be included either with the same objectives, or they wanted to set different objectives. And somewhat the same might be applicable to the Virgin Islands. So I see recommendations for the writers of the report to start including them.
For example, vital health data are available for Puerto Rico, and there could be comparisons of some indicators of people on the island versus the Puerto Rican population on the mainland, and there is no such comparison. That is often discussed in the literature as really important, because of the back and forth migration.
So I think that there would be some possible comparisons that could be included right away in the report, even if Puerto Rico didn't develop its own parallel, because the data systems are available to include the island population as one of the subpopulations groups that is identified whenever the data are available in the report.
DR. IEZZONI: Dale, could I ask you to do the following? You could do this as your first thing that you do, draft the section on the Healthy People 2010. So if you can possibly do that, I know you've got Data Council next week, but if that could be the first thing you draft. And e-mail it to us, just that one little section. We will commit to you to turn around within a day or two. If you don't hear back from us, assume back that we'll get back to you later, but it's not critical. And then put that into the report that May 20th you send out to everybody.
MR. HITCHCOCK: I'll be happy to.
DR. IEZZONI: Great.
So we have Medicaid managed care. As we talked about before lunch, this is our final opportunity as a subcommittee to do it. We haven't done it yet. We have been kind of dancing around the issues. Anne has been good enough to hang in with us. So Anne, thank you for coming.
I will just say that preliminary reports on your revised recommendations are very positive. People like the direction that you are going in very, very much. So what I'd like to do is what we did with the insular areas report this morning. We'll go through recommendation by recommendation, starting with the framing, and just kind of walk through it. So hopefully in the next two hours we will be able to get through this.
Anne has not yet had an opportunity, since it's only been a week since we had our conference call, to actually revise the full final report. But she will be doing that, and will it get it back to us when she is completed with it, working with Carolyn on that.
So what we will be working on today are the recommendations. Does everybody in the audience and everybody around the table have copies of this? Patrice will have copies of it, and get copies for people so you can see as we are going through -- Anne has copies -- you can see as we're going through, what we are going through.
On the conference call last week, one of the first things that we asked Anne to do was what we asked Dale to do on the insular areas report, which was just have a few paragraphs of context. So what you see on the first page, the first three paragraphs are the paragraphs of context that Anne drafted as a result of our suggestions. So do people have comments on those first three paragraphs, the context setting part? Barbara?
DR. STARFIELD: Anne, I think these paragraphs are terrific. They really set the stage very well. I finally see in the last part of the third paragraph, the thrust of the report, which is while the model specifications are specific to Medicaid managed care, they are not exclusive to it. And I think that's very important for this report to do that. So I just commend you; that introduction is really good.
DR. IEZZONI: Paul, Elizabeth, Kathy?
MS. WARD: My questions are not about this.
DR. IEZZONI: Okay, not about the content. Paul?
DR. NEWACHECK: Just one comment about the second paragraph, at the very end of it, talking about how states vary in their use of contract language. Then the very last sentence says, "However, the specificity of these contract provisions varies across the states."
It's also the case, it seems to me from our discussions and the hearings and that, that the compliance also varies across the states. Even if the language is in the contract, it doesn't mean that the MCOs or other data collection organizations actually do these things. I'm wondering if we could add that to it, and maybe have a statement somewhere in here that compliance is not just having the language, and it's not just articulating the policies, but it's insuring that they are actually complied with.
DR. IEZZONI: Kathy, anybody, other comments? Okay, Anne, great. So the context, a little bit of revision. I think people are really excited about it.
All right, now the next recommendation, again, Anne has kind of grouped recommendations into categories. And under the broad heading of model contract language there is a series of recommendations. Then at the end there are a couple of additional very broad categories -- training and data dissemination and availability. So under the model contract language there are seven specific recommendations.
So the next broad category of recommendations has to do with the model contract language. Anne, can you just summarize for us again -- I know Sara wasn't able to be here with us today, this afternoon -- where the model contract language stands from your point of view. How finished it is.
MS. MARKUS: At this point we are actually getting ready to go to the vetting process. So now that we have sort of finished the preliminary stage of going through the language with some of the members of the committee, and some of the representatives from other agencies, we are going to be ready to start the vetting process. So they are still in draft form obviously, and we expect that to move along very soon, along with the other executions that are going on right now.
DR. IEZZONI: Just for people who haven't heard what your plans are for the vetting process for that, can you just briefly go through that?
MS. MARKUS: Well, my understanding is that we try to get a group of people with an interest in the issues to talk through the policy that is basically set in those specifications. We've gotten suggestions from Dr. Newacheck about maybe contacting some of -- I actually can't remember which groups specifically. So we will be contacting people. And if you have other suggestions, we will do that as well.
DR. IEZZONI: Okay, great. I think the first thing that we need to deal with is the first couple of sentences of the model contract language paragraphs, which says, "The subcommittee recommends that state Medicaid agencies use consistent contractual language in spelling out data collection and reporting requirements."
That recommendation is more prescriptive than a lot of what our committee has typically done, that we have typically kind of recommended that they consider using. So I just wondered -- I know we're equivocating -- how the subcommittee felt about those first -- are we going to recommend that everybody do this? Are we going to recommend that people consider doing this?
DR. NEWACHECK: You know, I think there is a little bit of that in here. There is a little bit of equivocating back and forth in some places where we say that the core elements would be part of this, and other places where we say they might consider this.
DR. IEZZONI: Right, so how do we do this?
DR. NEWACHECK: They are back and forth on this. I feel like we should make a strong statement. I don't think there is much point to saying there are a bunch of options out there. The states already know that. They can do what they want already. And I'm not sure to what extent HCFA can require the states to say for example, require of the MCOs in their states that they contract with, provide these core data elements or whatever. But if we can, I would like to make that recommendation.
DR. IEZZONI: How do other subcommittee members feel?
MS. WARD: This is probably the one recommendation that I would be glad to go forward with. I'm not sure there are others in here I can. That's what I got out of all the hearings, is that we have one single problem. My only concern was that it was going to out to all state Medicaid agencies. I'm not sure that affects any change. I sort of thought if you can make some change, we're going to have to go to HCFA and say, you have a set of core data elements that you have to have reporting.
If you do information resource management, the person who is going to get the data has to decide why they want the data, and what they are going to use them for. That was the part that I came away. So the agency that wants the data has to decide what they want and why they want it. Then they have to tell the people who are going to report it, that that is what they need and why. And that is going to have to be explainable. Then you devise the core data sets around them. That's to me, entirely missing.
That would be my one recommendation that came out of the hearings. I don't have strong feelings about any of the others. Some of them in fact, I want to recommend against.
DR. IEZZONI: Maybe we should start going through some of the specifics then.
Aaron?
MR. HANDLER: In a previous life in my office I was the OMB information and collection clearance officer. When the federal government or any agency of the federal government requires a non-federal entity or individual person to report in a standardized way, you have to get OMB information collection clearance.
The fact that the Department of Health and Human Services gives funds to the groups that you are addressing here, it is sort of like a heavy-handed type thing. You need OMB clearance if you are making a non-federal agency do something.
DR. IEZZONI: You correct me. There is statutory language about their ability to collect data, right?
MS. MARKUS: Within the constraints of --
MR. HANDLER: Now the National Center for Health Statistics encourages state health department to collect birth and death statistics in a standardized way. And OMB collection clearance is not needed for that. But it is a decision that the state makes. Once every ten years the state registrars are brought together, and they hash and rehash. You don't need OMB clearance for that.
DR. IEZZONI: Anne, could I ask you to ask Sara to just consider the implications of Aaron's statement for the draft language?
Bob, do you want to come up to the microphone? This is Bob Gellman, who is also a member of the National Committee, but not a member of our subcommittee.
MR. GELLMAN: I don't really understand this draft contract language. It was distributed at the last full committee meeting, and I filed some comments on it. I want to read a paragraph here.
"In general, I find almost nothing in the contract laws as recognizing the rights or interests of patients. I also see many provisions that strike me as inconsistent with privacy policies approved by the NCVHS, and with policies supported by the department. I am confused about why NCVHS is involved in this effort at all. The effect is to take patient data from a health care provider, and convey it lock, stock, and barrel to another health care establish with the consent of, or notice to patients, and without any real regard for privacy interests. Indeed, it appears that the contract laws could, among other things, result in the transfer of patient care data and the ownership of that data to a patient's employer, with no clear restrictions on use or dissemination by the employer."
I have three pages of detailed comments. I found at least the draft that I saw to be legally incompetent, because the clauses didn't make any sense at all in many cases. And I don't understand what the policy is, or why we are doing this. This is the equivalent of writing the note for the bank robber on the way into the bank. That is my impression of this.
DR. IEZZONI: Okay, well, let me first define why we were doing "it," and the it that I want to focus on is trying to think of some way to collect consistent information. The reason that we are even doing this is because this is what we have heard from the states that they want, and from a variety of stakeholders, that there is no way to kind of assess what is going on out there until we have consistent information. So that's kind of the underlying basis of why we even decided to think about doing something like this.
Bob, this is a work in progress. We need to hear comments like yours. We're in the process right now of considering issues exactly like what you raised. We certainly don't want to give a note to the bank robber. So I think that we need to -- Anne, I'm sure that you and Sara will be considering this, and making sure that as you look through what you are doing, that it is not what Bob just suggested, which is giving information without appropriate consent procedures and agreements. And there is no way that employers can get this.
I think, Bob, we need to hear from you, and we need to consider your comments. None of this is finalized yet. I think we are still in the process of hearing and learning from people what they think.
So can you give -- Carolyn, can we all get copies of Bob's comments, so we all can see them?
MS. RIMES: We forwarded them to GW.
DR. IEZZONI: But it would be good for the full subcommittee I think to maybe get copies of them as well. Bob, we haven't seen the copies of your comments. So if the full subcommittee could get the copies, that would be great too.
MR. GELLMAN: Well, that's fine. I appreciate your sentiments. I'm likely to be a critic rather than play any other role here. But I will help if I can. Aside from all the legal and substantive questions about this, I really have sort of a fundamental question about what is being done here. This is something that the NCVHS committee, while I have been on it, and while I have watched it, has done, and it's always full steam ahead in collecting and sharing data, and privacy comes at the end. There is a paragraph that says, oh, yes, we'll do it all in consideration of privacy laws.
Well, there aren't any privacy laws that apply to most of the players here. So what you are doing is you're giving away data to people. You are setting up an institutional mechanism to provide data to people where it is going to be totally unprotected under law, and we know that.
So the question is, why are we doing this? It's very nice to say the data is useful, and I don't really disagree with the substantive conclusions here about the value of data. But you can't have it both ways. You can't say we're concerned about privacy too, and then whenever it comes to making a decision, the privacy interests get totally thrown out the window, or incorporated in a paragraph in the back. And we go full steam ahead with other activities.
DR. IEZZONI: I don't think we should put the privacy paragraph in the back. Do other subcommittee members have a feeling about that? No? I don't think anybody wants to put it in the back. I hear what you are saying about the process. I mean if we had thought about this beforehand, it may have been appropriate for us to work jointly with the other two subcommittees frankly, on moving into the model contract language, and perhaps we should have done it that way.
But we didn't, and we may have made an error, and we probably did. But I think part of the reason was that the other two subcommittees were so busy on doing other things. So at this point, where we are right now, we have to figure out how to make sure that the privacy issues are addressed.
MS. COLTIN: I just want to make it clear that we weren't operating under any false assumption, but I certainly was operating on the assumption that prior to Medicaid agencies contracting with managed care, they were receiving detailed fee for service claims data for all of the health care services that beneficiaries were receiving, and therefore had access to all of the detailed clinical, demographic, et cetera information for fee for service Medicaid beneficiaries.
The concern was that by moving these beneficiaries into managed care, Medicaid would lose its ability to directly have access to that kind of information. And that would hamper its ability to exercise any oversight over managed care, and to assure that Medicaid beneficiaries being cared for in those systems were in fact being cared for appropriately.
That they access to services. That they were receiving good quality care, and so forth. And that the information that we are talking about here in terms of the core data elements or encounter data is really just restoring back to Medicaid access to data that they previously had under the fee for service system by channeling it through the managed care organization back to them, so that they don't lose that data. But it is not giving them more than they had before.
MR. GELLMAN: Can I make a couple of comments? First of all, in terms of the process, I don't have any complaints today about the process. This document was distributed a while ago. I had a shot at it. It's being discussed, and presumably will come back. So that's all fine. Whether other people need to be involved or not, I don't think is a great matter.
At this point in terms of the data flows of what routinely happens, I know less about that than all of you. I hear what you said, and that makes some sense. It doesn't mean I'm for it, but it makes some sense.
Some of comments are out of context. I took this document, and I read it. I didn't quite understand where it came from, or what it was. I recognize that.
DR. IEZZONI: I think one of the problem, Bob, is that we didn't have our report yet. The contract language really needs to be linked back to the report.
MR. GELLMAN: And some of that may help, and maybe that would assuage some of my substantive concerns, some of my policy concerns. I don't know, that may well be. And so if I knew more, I might have stronger opinions or weaker ones, I don't know.
DR. IEZZONI: But you will have an opinion.
MR. GELLMAN: Yes.
DR. IEZZONI: And we welcome hearing it.
Elizabeth, you look posed.
MS. WARD: Not until you get to the next one.
DR. IEZZONI: Okay. Hortensia, Paul, Barbara?
DR. STARFIELD: Let me just ask a question. I have some problem with the words in the model contract language, satisfaction surveys, public health data. Do you want to take those up under this section?
DR. IEZZONI: Let's go through Anne's recommendations first, because as she said, the contract language itself is undergoing a vetting process right now. So I'm concerned about making sure we have some recommendations that can be brought in front of the full committee.
Bob, the recommendations are around our full report. So there is a whole report that you haven't seen yet, for Kathy to be able to bring up on June 22nd, or whenever the meeting is going to be. So I'd like to make sure that we get through that first, and then to the extent that we have time, we can go through specific language in the model contract, or you can communicate directly with Anne.
DR. STARFIELD: It's the headings of these sections.
DR. IEZZONI: The headings of the sections then? Okay, do you want to talk about the headings of the sections then?
DR. STARFIELD: Yes. Well, I have a problem with the satisfaction with access to and quality of care. And I like the fact that there is information on access and quality of care, but I don't think it should be limited to satisfaction. I actually think we should use a broader term like experiences. Then within that we can include satisfaction. Okay, that's a sort of minor technical point, but I think it's important.
The other one is public health data. You had trouble with it too, because you put it in quotes. But what you are referring to really is basically notifiable diseases. So you just basically ought to call it that, because it's not public health. There is lots more to public health data than that, and yet that's the only thing that is addressed.
So in terms of the phraseology of these categories, those are the two I have a problem with.
DR. IEZZONI: Great. So let's go through one by one. The first one is core data elements.
MS. RIMES: Let's also think in terms of priorities. And as things come together, what you want to support and not, as Elizabeth starts in. But is there anything that is missing that the subcommittee wants to stress?
DR. IEZZONI: Let's use this as a framework to start that process, discussing it. Is that okay? So the first one, and we might want to reorganize these too, because I suspect if we start with core data elements, there might be some people who might feel a little overwhelmed at the beginning.
So Kathy, let's start with the core data elements.
MS. COLTIN: You had asked if there was anything missing.
DR. IEZZONI: Do you want to start with anything missing? Okay.
MS. COLTIN: The only thing -- I apologize. I didn't get this in advance, so I may have missed it.
DR. IEZZONI: We all just go it.
MS. COLTIN: But I think we had talked about one of the problems being the sharing of information across various state agencies. I don't see it necessarily coming under the model contract language. It's not clear to me where it fits. And I don't see it as a separate one.
MS. MARKUS: Originally it was under the category of coordination with public health agencies. In the process of redrafting this, it got dropped. But because the issue is exactly how are we going to encourage sharing of data, and what is exactly the recommendation you want to make in that area. But we can certainly put it back in there.
MS. COLTIN: That was one of the things that we had talked about.
DR. IEZZONI: Yes, we had talked about that. That was certainly a recurrent theme at our site visits and hearings.
MS. COLTIN: One of the things in regard to that in terms of fostering it, and it sort of occurred to me when we were talking about the Healthy People 2010, is that there is a grant funding program in CDC called the Assessment Initiative grants. They are designed to help public health departments create partnerships with managed care organizations, or with other state agencies to improve their data systems capabilities, and to share information.
I would be very comfortable recommending that that program actually be expanded, and that states take advantage of that to work on how they can share information with managed care organizations, Medicaid departments and so forth, and how they can work with other state agencies also to think about building that capacity.
DR. IEZZONI: Just bouncing back to Bob's comments, do people think maybe we should put something about privacy in the context before we even get to the recommendations? Kathy, I'm so glad that you are here, because you have that practical experience. You are absolutely right. A lot of these data have been collected by Medicaid agencies all along. So we should probably mention that too.
So it isn't as if these ideas are coming out of the clear blue sky. In fact, this might be a way to protect privacy more, because there is a focus on it, but I think maybe putting that in some of the context piece might help.
All right, so why don't we do this. Why don't we leave the floor open for any recommendations for omitted recommendations as we go along, because people are probably going to think of things as we go along. So people can interrupt at any point and say, but you didn't include. But let's try right now just to structure the discussion to go through the seven items that Anne has listed here.
So core data elements. Barbara, and then Paul.
DR. STARFIELD: I like the core data elements, but I like the second paragraph, and I have trouble with the first, because I don't understand what is coming from the first. I don't know what core data elements are in the first paragraph, and yet it's the introductory one.
So I think it could be taken care of just by saying the subcommittee recommends that state Medicaid agencies adopt a set of core data elements that are standard across states to insure comparability to information collected for enrollment and encounters. That then clearly anchors it into something we can understand. And the rest I have no problem with.
DR. IEZZONI: Paul?
DR. NEWACHECK: I think we need to be a little bit more prescriptive here. I'm not sure that recommending that states adopt a set of core elements is going to go very far, because the states aren't going to do it on their own. They don't have the capacity to do it. There is not the leadership at the state level for one state to pull this all together.
So I think we need to really make this a HCFA responsibility. So I would change it to the subcommittee recommends that HCFA adopt a core set of data elements for use by the states, something to that effect.
DR. IEZZONI: Elizabeth is a state person, and she seems to be nodded. Even though she admitted earlier today to reacting like a bureaucrat sometimes.
MS. WARD: That's the only way it will happen. No, I agree wholeheartedly with Paul.
DR. IEZZONI: Okay. Kathy, on this one?
MS. COLTIN: I have to say that even speaking from the managed care side, that makes a great deal of sense, because many managed care organizations are nationally based. They deal with Medicaid agencies in many different states. They don't want to have to create different data sets for different states. They have a single claim system, and to the extent that they can output from that a common extract, it would make it much more efficient for them.
DR. IEZZONI: Anne, one of the things that Dale Hitchcock said on the insular areas report that was very helpful was that under each heading about a recommendation, he first had a paragraph that kind of gave the background or context. What Kathy just said, and some of the other thoughts about why you might need a HCFA to do this, I think would be helpful context. And why it would be important to have a core set of data elements consistently collected.
Then highlight the recommendations, kind of bolded and indented underneath that. So Carolyn, you can probably help with that formatting. So the idea would be to give some kind of rationale before you present what the recommendations are.
MR. HANDLER: Lisa, the one thing that bothers me is the use of the term "core data set."
DR. IEZZONI: Because it has a connotation.
MR. HANDLER: And everyone is doing the same thing. The National Center for Health Statistics in its vital events system has a suggested set of items for birth and death records. They don't call it core data set. Maybe that's the thing that rubs me the wrong way. We need a different name for it.
DR. IEZZONI: I actually think that using the phrase "core data elements" is going to confuse people. They are going to think that it is the NCVHS 1994 recommendations or was 1996. I know it says that, but that's why my comment a few minutes ago was that that can make people kind of nervous, because it is really big.
And I think that suggesting that HCFA work to kind of specify a set of necessary data elements, recommended drawing out of the NCVHS core data elements.
DR. NEWACHECK: I have a problem with recommended, because recommended implies that it is optional.
DR. IEZZONI: I am just uncomfortable recommending our NCVHS core data elements. Given that we are saying that HCFA needs to specify, Kathy, what's your thought?
MS. COLTIN: I am too. I'd like to just add something onto what you just said, which would be the words and consistent with the standard administrative transactions defined under HIPAA.
DR. STARFIELD: I worry if we delete all reference to the core data elements -- and I agree with Kathy's annotation -- it's going to be so vague, it's going to be useless, because HCFA is not going to sit back and redevelop its McData.
DR. IEZZONI: I don't think it will be so vague, because I think we will make reference to it. And certainly making reference to the transmission standards is not vague. Because there are data elements in the transition standards. So I think using Kathy's language, my language, and your language, hopefully, Anne, you will be able to craft something.
What can we call it other than core data elements?
DR. NEWACHECK: Minimum data set.
DR. IEZZONI: Well, that has a connotation. That has another connotation, but you are heading in the right direction. Core data set.
MS. WARD: Could you just say a set of health data elements that are standardized across the states?
DR. IEZZONI: So a set of standardized data elements. What's the acronym for that? Well, whatever. Take the word "core" out. Great, perfect. Anne, have you got that?
MS. COLTIN: I would just reverse the set and standardized. I would say a standardized set of data elements.
DR. IEZZONI: That is excellent. Great. Perfect. Wonderful. Move on to number two.
MS. MARKUS: Excuse me, do you want to keep the reference to the committee's report?
DR. IEZZONI: I think we should say yes. Yes, we should keep it, but it should be drawn from, consistent with the standard data sets, the HIPAA transactions. I think having HIPAA up there, up front is a really good idea. We found that some of the states -- like in Massachusetts people didn't really know about HIPAA. So having it right there would be a good thing.
Elizabeth, you looked as if you had something to say.
MS. WARD: I thought Kathy's comments about the whole point of this were excellent. But we also heard that even in the good old days when everybody sent everything, there was still the sensation that they were sending everything, but not everything could possibly be used in the sense that everyone wanted to get an answer back saying do you really need all of that. Every piece of data does cost something. Why are you wanting all of that?
DR. IEZZONI: Can I add to this also that we recommend adoption of identical code sets? One of the worst things with managed care companies is they use different codes for procedures. They each take CPT and tweak it, add their own. And so can we just standardized code sets, as well as standardized data elements?
DR. STARFIELD: I want to agree with you, but it's it part of HIPAA?
DR. IEZZONI: It is part of HIPAA, but we haven't gotten there yet. Our national committee hasn't yet dealt with standardize code sets. You might remember John Lumpkin at the executive committee, so we're going to have to do that soon. But I would like to have that in the recommendations.
MR. HITCHCOCK: The work group that Mike Morris is the staff person is considering that at their next meeting.
DR. IEZZONI: Yes, I know that they are about to start doing it. Maybe it wasn't John. Maybe it was Simon. But let's have it in our recommendations.
MS. COLTIN: Simon is chairing the managed care work group of the CPT-5 project. That problem is specifically being addressed as part of that project. So I think that it is reasonable to make that recommendation here, and hopefully that vehicle for doing so. One of the big things they are doing is looking at homegrown codes, which is really the problem.
DR. IEZZONI: Yes, the homegrown codes are everywhere, ubiquitous, and problematic.
Let's move on to common definition of an encounter. So the draft specifications are bold enough to try to define an encounter. How brave of you.
I think that we should again think about what the context of this is, and what the rationale for it is. Why we need to recommend a common definition of encounter. Anne has a rationale here to improve the validity and reliability of data collected. Do subcommittee members have any additional suggestions for what the rationale should include?
MS. WARD: To me this is very much a way of you can't implement a standardized set of data elements if you don't have common definitions. It was sort of like we are picking out one issue related to implementing a standardized set of data elements. I think maybe we have to explain why we are picking one, which is the encounter, and only talking about it.
DR. IEZZONI: Okay, and what would your answer be to that question?
MS. WARD: I don't know. That's my question, why did we do that?
DR. STARFIELD: I'll tell you why I think it's useful to do that. It's because the standardized data set refers enrollments and encounter data. So you have to define what an encounter is.
DR. IEZZONI: Okay, that's great. So, Anne, we can put that into the context paragraph.
Jim?
MR. SUMME: I'm concerned about a few phrases here. Face-to-face, does that preclude some of the applications in telemedicine or consult over the phone? The other concern is, is there any constraint here on the time period over which an encounter lasts? Then a third concern I would have is in a distinction between a health professional, and then later on it says support services. Maybe one health professional proscribes support services from another. Do we have some problems with scope and overlap?
DR. STARFIELD: I think we do have a problem, but I don't think we're going to solve it. This is just state-of-the-art technology. And I think the problem is going to evolve. I just don't think we can deal with it right now. This is a standard definition.
DR. NEWACHECK: Anne, in thinking about this you have face-to-face versus for example telephone visits or contacts or consultations. Including them or excluding them, that is the telephone ones, could have a big impact on say the reporting rates for numbers of physician contacts or something like that, and could make a plan look very good or very bad, depending on whether we included them or not. I think it is an important issue. I'm not sure what the answer is, but it is a big issue, it seems to me.
MS. MARKUS: That will be certainly discussed through the vetting process I'm sure, because the language is still in draft form, obviously.
MS. COLTIN: I think that's a very good point. I think those should be included. But I think they should be included as an encounter, but one needs to be able to differentiate types of encounters.
DR. IEZZONI: Could you just say person-to-person?
MS. COLTIN: I think it's direct to patient.
DR. IEZZONI: Direct to patient, that's reasonable.
DR. NEWACHECK: Or maybe just take out face-to-face.
DR. IEZZONI: But then you have encounter defining encounter. It becomes tautological.
DR. STARFIELD: What did you suggest, Lisa? You suggested?
DR. IEZZONI: Person-to-person. So instead of face-to-face, or provider-to-patient.
DR. STARFIELD: That's right, it shouldn't be member, should it? It should be patient.
DR. IEZZONI: So maybe, Anne, you could ask Sara about the implications of the language there. Jim, thank you for raising that. That's a good comment.
MS. COLTIN: You can use the term "contact" as opposed to encounter.
DR. IEZZONI: So it doesn't appear to be too much of a tautology.
MS. COLTIN: You can tell whether it was a telephone encounter or not from the CPT code. That's how we do it now. But I don't know about the telemedicine. That's an interesting one. I don't know how you do it.
DR. IEZZONI: When I was looking under number two, it says including radiological and pathological tests. And so --
MS. COLTIN: Well, that's what I was going to comment on. After the semicolon after C, in other words 1c, there is a semicolon and it says "and" too. I would say instead of "and" including to the following. Because the encounter is the direct contact. These others are services that were generated in connection with the encounter.
That has always been a problem. I know that when other core data sets have been developed for ambulatory care in the past, there has been a tendency, and I think this is partly a political issue around radiologists and pathologists, whose contact is with a film or a specimen, rather than a person, wanting those to be encounters.
And so they were getting called encounters, and if you called those types of exams or tests encounters, then you had to call every test an encounter. So it was getting, I think, very messy. I know that internally within the managed care industry we don't call those encounters. We call those services.
DR. STARFIELD: That's what is intended here.
MS. COLTIN: It covers visit or the phone contacts or whatever at which other services are ordered. If, however, one of the services that is ordered is a referral to another provider, that is another encounter, because that's another face-to-face or direct to patient contact.
MS. MARKUS: That is actually an issue, whether you want to count them separately or together. Maybe the language is not clear enough about that.
DR. IEZZONI: Yes, I think we're going to have to be able to distinguish them, don't you?
MS. COLTIN: I think it's separate claims. It's not an easy matter sometimes to always --
DR. IEZZONI: Well, this could be actually part of the context. There are different CPT codes for telephone contact versus -- sometimes the radiologist is in fact encountering the patient, because they are actually doing a procedure, especially invasive radiologists. So for that, I would consider that to be an encounter, and not a service.
MS. COLTIN: But that is a direct to patient.
DR. IEZZONI: It is. The patient and the doctor are together in one room at this time.
DR. STARFIELD: But I thought it was clear the way it was written. It was a service provided to the patient, not to the provider. And it should be patient instead of member. I think you ought to replace everywhere you've got "member" with patient. But I don't know. It seems to me that this is clear that it's only the first category, Kathy, that it's the services provided to the patient. It doesn't include the reading of the x-ray or the laboratory slip, because that's a service to the provider. So it seems to me it's clear, if that's what we mean.
MS. COLTIN: But you do want the plan to report on that. You just don't want to count it as an encounter. You want to count it as a service.
DR. STARFIELD: You mean the reading of the x-ray? Is that what you mean? But it's not included here.
MS. COLTIN: Right. But sometimes that may be the only mention you have. The only way that you know a patient got a mammogram is through a bill from a radiologist.
DR. STARFIELD: For reading a mammogram? Or for the whole thing?
MS. COLTIN: That's the only documentation you've got.
DR. STARFIELD: That's incredible. Is that right?
MS. COLTIN: Yes. They provide the service and they bill you for it, and that's how you know. You don't have what was ordered, you only have what was done.
DR. IEZZONI: Would you be able to just talk with Anne or Sara about this issue, kind of putting this into context as you have just done nicely?
MS. COLTIN: My sense is that the unit that the plan would report on really would be services. They are not going to roll this up into a single record. There is going to be a record for that radiologist's bill for that mammogram, and there is going to be a record for that office visit and so forth. But there needs to be some way to recognize which of those are encounters, and which of those are services rendered in connection with an encounter.
DR. IEZZONI: Let's move on to the next one then, which is race and ethnicity data. I think it's the top of the third page. It consumes most of the third page. Comment on this one? Elizabeth?
MS. WARD: I think this is a very difficult one. I would like to ask Kathy, if you were one of these managed care organizations who is going to have to implement our recommendation, would you ask for race and ethnicity only then on your Medicaid enrollees, or would you change your form so that everyone who is enrolled in your managed care organization gives you race and ethnicity?
MS. COLTIN: Well, in the opening to this we did say that these provisions are not unique to Medicaid, and that these recommendations are not unique to Medicaid. So I don't think that having this recommendation in here necessarily implies a double standard or a criterion that would only be applied to Medicaid, and not to commercial necessarily.
However, I think there are very few plans out there that are collecting this information for their commercial populations because of the appearance of discrimination. And to the extent that it were required, then I think that goes away. I think it's that the managed care organization doesn't want to appear to be the one saying you have to tell us this.
Whereas if everyone had to do it, and it was a requirement, I think it would be very useful information that actually could be quite beneficial to the member for the managed care organization to have in terms of identifying high risk populations for outreach, or people who weren't coming in for services. Right now we can't really do that very well.
DR. IEZZONI: Now, Elizabeth, I'm confused. It looks like it's the state that is going to be collecting the race and ethnicity data, not the managed care company.
MS. WARD: The managed care company has to receive.
DR. IEZZONI: Right, the managed care company would receive it from the state.
MS. WARD: They're a vehicle for receiving it.
DR. IEZZONI: But it doesn't mean that they would have to collect it, or would be interested in collecting on their other enrollees, on their non-Medicaid enrollees. They just need an empty field in their data set for this issue.
MS. WARD: But it got to my issue about the fact that I don't see commercial plans collecting race and ethnicity. That's my biggest concern about this. I want to work in a health care quality improvement arena where we collect this, everybody just does it. That when I fill it out as a state employee in my health plan, and I know why, and I see reports that come out that help me understand that in fact all insurance companies are looking at the issue of that.
But I also want it happening with the right kinds of confidentialities in place. I want to have it happening where those people who are matching data sets are doing it in a system that has encryption and security that I don't think exists yet. That is my concern. Part of my sensitivity is working in state government, where I see even our legislature agreeing to put on requirements on a group of people, because they happen to get a federal insurance company that they have to pay 50 percent of, but they would never fill out that on themselves.
I have been in hearing where those people who are trying to pass a law that says I want to know this about them. And we say, well, what if the private insurance industry does that? Well, I'm certainly not going to be required to share that confidential piece of information. That's what I'm concerned about around this.
DR. IEZZONI: Barbara and Hortensia, I know that both of you have an interest in this. We heard this recommendation clearly from the field.
MS. WARD: Yes, we did.
DR. IEZZONI: It was heard clearly from the field. I think it would be nice to be able to craft some recommendation around this, but we have to address your concern. Kathy?
MS. COLTIN: In a plan like ours, the overwhelming majority of our minority members are in our commercial product. So if the idea is to be able to --
DR. AMARO: How do you know?
MS. COLTIN: How do I know? Because we have very few Medicaid, so wherever they are, they are not in Medicaid, they are in commercial. The vast majority of our members are in our commercial product. So I think that if we wanted to pick up information on whether we were providing a different level of access, or a different level of quality to one minority group versus another, and you only looked at our Medicaid enrollment, that was the only group we could tell it to you for, you would be missing the boat. You would be looking at 10 percent of our members, and not the other 90 percent.
MR. HANDLER: Maybe we should be looking at this from a different point of view. To treat a person, there are certain things that need to be collected -- blood pressure, height, weight, cholesterol readings, x-rays, EKG, that type of thing. But usually you don't need to know the person's race to provide proper health care to the person.
Although, what if there are certain types of illnesses that are specific to specific racial groups?
DR. IEZZONI: There are, like sickle cell disease.
MR. HANDLER: Alcoholism among Indians. Maybe that is the way to approach this, that the information on race is needed to provide proper health care to high risk groups.
DR. IEZZONI: Aaron, we have to address the Medicaid managed care report based on the testimony that we heard, and the focus of our process.
MR. HANDLER: But you have to give them a reason for collecting race.
DR. IEZZONI: The reason that people told us repeatedly from the field is that they were concerned about underservice to minority populations, and they wanted to be able to track that. They wanted to be able to track quality of care to people of different racial and ethnic groups.
MR. HANDLER: Well, maybe that should be part of this discussion at the beginning. Why it needs to be collected then.
DR. IEZZONI: Right, that there have been historical inequities in health care, and that people want to be able to track what is happening to racial and ethnic minorities under Medicaid managed care.
Barbara?
DR. STARFIELD: I think race and ethnicity data is very important for clinical care, so let's just get that one out of the way. I think so. But the problem is making it specific to the Medicaid managed care data, where you don't have good denominators to begin with. So even if you have the numerator, you don't know how to interpret it.
The committee is taking up this issue. It feels very seriously about that issue. I think it probably better taken up as a general issue, rather than as Medicaid managed care issue.
DR. IEZZONI: I think what we need to say -- Barbara, you weren't involved in all of the hearing. What I would like to say is that we heard strongly from the field that people feel that this information is essential for us to get. That there still is no consensus in standardized data transactions that race and ethnicity data should be collected.
However, the stakeholders that we talked to uniformly raised this. Even from all different walks of stakeholderness, from all different venues this was raised as an important issue. So I think that we need to raise it.
We can make a recommendation. We can also acknowledge the practical impediments to achieving that, which is basically the standardized transaction sets right now really don't include it. And so we should maybe tie it back to HIPAA and some of that.
But I think that our committee has in the past made recommendations that nobody has implemented, because we felt strongly that they were appropriate. This might be one of those cases where we make a recommendation like that.
Kathy?
MS. COLTIN: I actually thought the enrollment transaction does include it. The issue is that --
DR. IEZZONI: Well, if it does then --
MS. COLTIN: Well, that's the problem. The problem is that on the commercial side, the source of the enrollment data, the data on the enrollment transaction is the employer, the purchaser. In that case, the private purchaser for a commercially enrolled population. That's analogous to what we are suggesting here, because it is the public purchaser that we're saying should collect it and supply it.
So it's not at all inconsistent with the direction that we are heading if we recommend that private purchasers or employers should collect that information on the standard enrollment transaction, and that would then be transmitted to the managed care organization as well.
The problem is that HIPAA doesn't require employers to comply with HIPAA. HIPAA covers plans and providers. Employers are considered sponsors, and the law does not require sponsors to submit standard transactions. All we can do is encourage them to do so, recommend that they do so, create a vehicle for them to do so through the standard transaction, but the law will not require it. Just as we can't require it here, we can recommend it. So again, I think it's analogous.
DR. IEZZONI: Let me just -- I think we should recommend it. So let's get a sense from the committee as to whether people think we should recommend it. But I do think that we should talk about some of the impediments and barriers as we have just discussed in the last ten minutes or so.
Yes?
MS. WARD: I would just add to those impediments we also heard from those same states where they wanted it, they talked about the people who would be collecting it. And they were very concerned. At the same time they said they wanted it, they also said at testimony the people who are collecting that are these public assistance folks who are not required to fill it out when they get their insurance form, and fill very uncomfortable figuring out why they are requiring it of this client who is in front of them, and that they recognize there are a lot of training and issues around how you ask someone that that's part of an enrolling requirement.
DR. IEZZONI: I have a recollection that at the Boston testimony we heard from an enrollment group relating to the state that they would make it an optional field. That the enrollee would be told that they are collecting this information, but it's optional for them. It's a self-report, because I think the consensus is that that's the most accurate way to get the information.
MS. COLTIN: And it's optional in the standard transaction set.
DR. IEZZONI: Right, it is optional to report. So I think that --
DR. STARFIELD: That has to be informed consent though, Lisa, because the person may not know that it's going to be transmitted to their provider. So it is complicated.
DR. IEZZONI: Well, okay, I think though that there are a lot of problems raised by this. I think, Anne, it might be good to actually go back to some of the testimony and see if we can pull some more quotes around race and ethnicity, not for the recommendation piece. You've got Rachel Block's right here. I think for in the full report where you talk about -- I think there is a place in the full report where you talk about it -- to give a little bit more of the context.
I hate to ask you to go back to those transcripts, but I think that that could help inform some of this, especially if we could get those quotes from those people in Boston who were talking about getting the data from people.
DR. STARFIELD: I know you want to get some flavor into this report, but --
DR. IEZZONI: No, not right here. No. I think we should remove quotes from the recommendation pages. I think the Rachel Block thing should be taken and put someplace else.
So I'm kind of putting down a straw person proposal here. I would like to recommend that state Medicaid agencies collect this information on their enrollment forms, but we need to acknowledge that the procedures for doing so need to be carefully crafted to protect privacy, confidentiality, and prevent this information from being transmitted to employers or other places that are not involved in direct patient care.
DR. AMARO: Isn't that a concern that we would have about any information being transmitted to any employer?
DR. IEZZONI: Yes.
DR. AMARO: I feel like the issues of confidentiality and privacy are applied to all of these data, not just the data on race and ethnicity. I'm not sure it sort of particularly comes up around this issue. But I think it's a broader issue, and that safeguards are needed in order to protect the consumer from having any information transmitted to the employer, not just this.
DR. IEZZONI: Right. I think Elizabeth though is reflecting what we heard in the field, that people are particularly uncomfortable.
DR. AMARO: That's a separate issue. So I'm trying to sort of separate out the different things that come out.
MS. WARD: I think the reason it comes up here is this is the one place where we particularly talk about an administrative bunch of data. We don't talk about that in other places. You are talking about transmitting data files that are being emerged. And you are talking about just what Barbara did in terms of does the patient know that when they went in to get insurance, that they knew that that in fact was going to be merged, and why that is being merged? Why are they collecting that? Those are the issues that do come up around everything.
DR. IEZZONI: It's actually not just race and ethnicity here. It includes language, reason for enrollment like disability, and other demographic data. So my statement would really pertain to all of that.
DR. AMARO: I thought that Kathy's comment were very helpful. We would want in the end to do what we can to promote this information being obtained on all people, whether they were Medicaid or non-Medicaid. So whatever suggestions we can give in encouragement to do that, that would sort of do away with the issue of some populations being asked this, and other populations not being asked this.
And also the needing to transfer this from Medicaid to the health plan. The health plan would still have to insure the patient that none of this information, or any other health information would be related to the employer. I think definitely in somebody's health record there is going to be lots more potentially damaging information that could be related to their employer than their ethnicity, for example, addiction, mental illness, et cetera. I would be concerned about that.
So I think the issue around whether people feel comfortable or not, or whether they understand why it is being collected needs to be addressed, but I feel like that is very possible to address. You can put certain training in place and articulation, and you would have to put in some kind of notice to the individual that information on this form was going to be related to their health care provider, and that they would have to consent to that, but also informing them of whatever privacy protections were in place, that this or any other health information was going to go to their employer.
DR. IEZZONI: I just sneaked a glance at my watch. It is 2:15 p.m. We have an hour and 15 minute to kind of wrap up our discussion and recommendations.
MS. MARKUS: I just have a question about the race and ethnicity data. Would you ever see that being called enrollment data, so it is broader?
DR. IEZZONI: Yes, that's a very good idea. Because you list it as broader, and I think appropriately so. That way it won't stand out. That's a good idea.
MS. MARKUS: In number three, to call it enrollment data instead of race and ethnicity.
DR. NEWACHECK: On that same line of logic, I wonder if actually if number two and number three ought to be subcategories of number one in a way? They do sort of stand out as being kind of odd, why did you pick these particular two things. If they were 1a and 1b or something like that.
DR. IEZZONI: That's a good idea.
DR. STARFIELD: Are we taking out the notion of transmission of these data from enrollment? No. We're leaving that in? Then it's not a subcategory of one. If we are talking about transmitting enrollment data to the provider, it's not a subcategory of one, I don't think.
DR. IEZZONI: We are transmitting the enrollment data to the plan, the health plan.
DR. STARFIELD: It's an issue beyond standardization. It includes another concept. It's a technicality. Technically, it's not really under it.
MS. COLTIN: I think it's fine, Barbara, especially since you added the words in the very first sentence about comparability of information collected for enrollment and encounter. And then you go into more detail in each of those two.
DR. IEZZONI: Okay, let's move on to item four, that Barbara has renamed as well, experiences with care basically. So instead of calling it satisfaction with access to and quality of care, calling it experiences.
DR. STARFIELD: And I would take out "satisfaction" everywhere else except perhaps at the last sentence, where satisfaction is included within a wider category. There are several places you've got satisfaction there. I would just take them out. You don't need it.
DR. IEZZONI: Under that recommendation, it's just a couple of brief paragraphs. Again, I think we need to give a tiny rationale for that.
Any comments about that particular recommendation?
DR. AMARO: That last sentence, just the language needs to be worked on -- purpose, and be translated into. I would say that my suggestion would be that we not identify Spanish, but rather sort of a guideline for when translation needs to occur, and how you go about identifying what languages. Spanish may not be relevant in certain areas, but plans may want -- we may want to recommend some kind of criteria for when you translate. Like what percent of the population that you serve speaks other languages, X language. Something to that effect, instead of identifying one language, because that may be an irrelevant language in a specific plan.
MS. MARKUS: So where appropriate? Be translated where appropriate?
DR. AMARO: Translated into languages other than English when something like a group represents X percent or more of the MCO population. I don't know, something like that.
MR. HANDLER: The Census Bureau is going to be translating Census questionnaires into like eight or ten different languages. They have it in Korean, Chinese, Japanese. It depends on the neighborhood. Vietnamese.
DR. AMARO: Right, and so I would think Kathy that of course if you don't collect information on ethnicity, then I don't know how you are going to decide. Then how do you know what your membership of your providership, the cultural competency of your providership?
DR. IEZZONI: We are recommending that you collect language on the last one.
MS. COLTIN: There is a way around it though if that doesn't happen. And it may in fact be something we want to recommend. I believe when HCFA implemented Medicaid caps they had a postcard that went out with the survey where they had in multiple languages on that postcard, if you would like this survey in a different language, check the one and send the postcard back. And then they would send it to you in the right language.
Of course that still can introduce response bias, because it's an extra step the person has to take, and may or may not, but at least it is a way of getting around not knowing in advance, if you didn't collect language or race or ethnicity.
DR. AMARO: My question was do plans know the language composition of their members?
DR. IEZZONI: Well, on the last recommendation we recommend that on enrollment you collect language. And that that information be transmitted to the plan. So our recommendations would all the plans to know the language that is spoken by their enrollees.
MR. HANDLER: There are some patients that can't speak English. When they go into the plan and they can't speak English, there has to be somebody there that can speak with them. So the plans, yes, should know what language their clients are speaking.
DR. IEZZONI: So we have a procedure for the plan to know the language.
DR. STARFIELD: How strongly do people feel about recommending the CAPS? I personally don't feel it is adequate.
DR. NEWACHECK: I like it myself.
DR. STARFIELD: That's why I asked the question I asked. I think it's missing a lot of important areas.
DR. IEZZONI: Well, it is currently used. I think that the whole goal of being standardized -- I think use CAPS or other standard surveys that are widely used, to be consistent with others.
MS. COLTIN: I'd like to strongly recommend that we say CAPS for a couple of reasons. One is we're talking about Medicaid and managed care, and right now managed care organizations are required to use CAPS. If you want benchmark information, if you want to compare Medicaid with non-Medicaid, whatever, that's what you have to go with.
DR. IEZZONI: I think we should recommend CAPS. I'm just reflecting on a conversation that Paul and I had during lunch, that for children with disabilities and chronic illness, there is in fact another survey right now that is going to be competing with a CAPS version, addressing kids with chronic illness. And for that specific population, which is very relevant to Medicaid, it may in fact supersede it.
DR. STARFIELD: It may be a better instrument.
DR. IEZZONI: So I think we should recommend CAPS, but we should also say and if other instruments become the mainstay of a particular field or whatever -- I don't know what language you would use to just make sure that instruments are consistently applied across populations.
Paul, do you want to make a comment about that?
DR. NEWACHECK: Well, I think you're right. To the extent that new instruments become available and widely used, we would want to have that become the standard. We don't want to be locked into CAPS forever. But as Kathy said, I think it is the model that is used right now for most commercial employees, enrollees, and for Medicaid enrollees. I think to suggest that there might be yet another one that states should consider would just add confusion to the field at this point.
DR. IEZZONI: No, I think we should recommend CAPS. All I'm saying is that we should leave an out that for certain subpopulations, that if other instruments become standard, that states could consider those, but recommend CAPS.
MR. SUMME: Lisa, do you want to consider oversampling of some subpopulation? Or do you want to consider instruments specific to those subpopulations?
DR. IEZZONI: I don't think we want to get that micro in these recommendations, because it's going to differ for plans.
MR. SUMME: You have the general truism that 20 percent of your enrollees drive 80 percent of your costs. It seems basically in terms of assessing overall quality of care and their experience, you certainly want to target those 20 percent.
MS. COLTIN: But this is a recommendation to state Medicaid agencies to use CAPS for all Medicaid enrollees. So are you talking about subpopulations within Medicaid?
MR. SUMME: As I understand, CAPS is simply an instrument who doesn't indicate a particular survey.
MS. COLTIN: No, there is a Medicaid version of CAPS. There is a Medicare version of CAPS. And there is an adult and child commercial version of CAPS. Each of those has a core survey, and then there are optional modules that states can use as well.
MR. SUMME: Okay, but is there a sampling plan? You are not going to administer CAPS to everybody in your plan, correct?
MS. COLTIN: It's a random sample, right.
MR. SUMME: A random sample. Do you want to consider other sorts of samples that would target certain subpopulations?
DR. IEZZONI: I'm not sure in these recommendations that I want to get that micro in terms of managing.
DR. NEWACHECK: I think it's a really complicated issue.
DR. IEZZONI: I think it is.
DR. NEWACHECK: It's a lot of sort of HEDIS process. There are all kinds of issues that get involved here.
DR. IEZZONI: Because it might differ in different markets. It is going to differ. In some markets that have a lot of different language and a lot of new immigrants and so on, it could be very different than in rural population.
DR. NEWACHECK: I think Jim is right that this is a critical issue, because we really do want to know about those people who are most vulnerable in plan, not necessarily those that are the healthy ones, who don't need the services or use them. But to get into this issue in this report I think might be too complex.
MR. HITCHCOCK: What is the actual recommendation here though? These are recommendations for the model contract language, true? Are we saying that the state should do their own survey, which would not be part of a contract.
DR. IEZZONI: No, this is the contract with the managed care organization.
MR. HITCHCOCK: My point is that if the state were doing a satisfaction survey, call it whatever you want, there would be no need for this language in the contract, because the state would be conducting its own survey.
DR. NEWACHECK: I think the problem is that all the states differ, or they would differ in what survey instrument they would use. And we would have no ability to have comparable data.
MR. HITCHCOCK: Well, that's still not a contract issue.
DR. NEWACHECK: No, it's not a contract issue.
DR. STARFIELD: But it is a contract issue. We are suggesting that the states require managed care organizations --
MR. HITCHCOCK: That's a contract issue. But a state doing their own is not a contract issue.
MS. COLTIN: It's an either/or. Either they do it, or they require the plans to do it.
MR. HITCHCOCK: My point is if they do it, it's not a contract issue.
DR. IEZZONI: Right, and so it says for states that wish to require MCOs to administer satisfaction surveys. And so our recommendation is around the contract for the MCO to administer the survey.
MR. HITCHCOCK: Basically, the heart of this recommendation is if the state requires in the contract for the MCO do this --
DR. IEZZONI: Right, that they all use a consistent instrument, which is CAPS.
DR. NEWACHECK: I wondered if we could be more prescriptive here with this recommendation? I think right now it basically is a recommendation that state Medicaid agencies consider doing this. I would like to have stronger language that says the subcommittee recommends that HCFA require state Medicaid agencies to administer, or require MCOs to administer this.
DR. IEZZONI: Yes, because it's not the Medicaid agencies, it's the MCOs.
DR. NEWACHECK: But I'm suggesting a revision of this first sentence here that would make the satisfaction survey be an integral part of the Medicaid managed care process, and a required part, and that HCFA would set the guidelines for doing that, just in the same way that HEDIS does it for commercial plans that want to participate in the HEDIS process.
And also have standards for mode of administration, sample size, sample selection process, so that it is done uniformly. So that we have some way of knowing or a state has some way of knowing within its plans, how well they are doing compared to each other. And then from state to state, if our recommendation about putting the state in the public domain can be compared, we can say well, California is doing well compared to New York or vice versa, that sort of thing.
DR. IEZZONI: So, Anne, did you get the language that Paul was just --
MS. MARKUS: But maybe one way to look at this, since we are focusing on the model contract language, and then taking your point into account, is actually separating out your recommendations to HCFA, which would probably parallel a lot of the stuff that you are recommending states should do with their MCOs. I don't know, because you wanted to do that under the core elements?
DR. NEWACHECK: Right.
MS. MARKUS: And probably that would also be valid for the definition of encounter, requiring HCFA to use the common -- you know what I mean? So in each category actually, HCFA could be required to do the same thing. But it's not a contract issue per se. It's you recommending that for HCFA.
DR. NEWACHECK: That's right. That's true.
DR. IEZZONI: Okay, that sounds like a good plan. So why don't we draft it that way?
MS. MARKUS: We'll see if it works or not.
DR. IEZZONI: Are there any more comments on that particular recommendation? Should we move on to carve out services?
Kathy?
MS. COLTIN: In the second paragraph where you say for states that wish to require MCOs. I think it should say the draft contract specifications. So we are not talking about the survey specifications. We just talked about a survey, and I want it to be clear that here you are talking about the contract.
MS. MARKUS: Right.
MS. RIMES: Does this stand separately as its own recommendation, or is also a subset under one?
DR. IEZZONI: It is separate. This is not a standardized data element.
Carved out services, the next recommendation. Hortensia, you must have some comments on this one.
DR. AMARO: I was wondering whether carved out was the right all inclusive term. There might be another word. I wanted to make sure that everybody who was contracted out to do something, would be included and required to report. So I wasn't sure about the right term.
DR. NEWACHECK: Carved out is kind of jargon.
DR. AMARO: And it's kind of specific to one type of an arrangement.
MS. MARKUS: And there are two arrangements here actually we are talking about, it seems to me. The one case where the state actually is not contracting with the MCO for specific services, and contracts with different providers. And then the other case is when they actually contract with the MCO, which then subcontracts for some of the specific services.
DR. AMARO: So I don't know what the term is. We want a term that includes all of those.
MR. HANDLER: In the Indian Health Service sometimes we refer to a benefits package. It has a little positive twist to it.
DR. IEZZONI: We want specifically here to refer to contracted services, because their reporting might be different. But we want to make sure that we get information on them.
DR. AMARO: And you might want to have a note or an example, a number of examples.
DR. IEZZONI: So like in your context paragraph, you can describe what this means.
MS. COLTIN: Be careful calling it contracted services, because the context here is the managed care organization, which makes these non-contracted services.
DR. IEZZONI: Anne would have to describe those two options, so it can be contracted and subcontracted services. But Anne's first paragraph would describe what we are talking about here, so hopefully, people would be clear about it. So given that, Hortensia, how do you feel about the recommendation?
DR. AMARO: I think it is good. I was wondering again, like the rest of them, whether our recommendation is going to be state Medicaid agencies or HCFA? But that's not different than in the other recommendations. I guess some of them we are directing to HCFA. I'm just wondering whether it might not be more efficient, or maybe there are issues for not doing this, but to direct these to HCFA, than to be recommending to each state.
DR. STARFIELD: I thought that's what Paul and Anne agreed on, is that all of them would be re-recommended.
MS. MARKUS: There would be two levels of recommendations, basically. Recommending that HCFA do this, this, and that. And the look at the contract level, what the states should include in their contracts.
DR. AMARO: Okay, fine. So then this one will really be a recommendation to HCFA that whenever there are these subcontracted or whatever we are going to call it services -- this is really pertinent to a lot of things, but particularly to mental health and substance abuse. So my interest would be that HCFA would require the states to guarantee that whatever data they are required to do, that anybody they are paying to do the service would also be required to.
MR. HITCHCOCK: Could I comment about that? What Aaron was saying about OMB clearance, even though customer satisfaction -- some clearances are faster than others. Every time we tell HCFA to require something, then they are going to have to get it approved through OMB. I would hope that we could also at the same time put out the model contractual language a state could feel free to pick up or not well before HCFA has the bureaucratic process of maintaining or requiring anything.
DR. AMARO: Are those required by HCFA or by the state Medicaid? And then does that apply, what you are saying?
MR. HITCHCOCK: All I'm saying is that if HCFA actually requires something, then it's a lengthy process to get it approved.
DR. AMARO: So in the current system --
MS. COLTIN: I think they already do.
DR. AMARO: HCFA is the one that requires these, right, these transaction forms?
MS. COLTIN: I thought that when Rachel Block came and testified to our hearing, that she said that HCFA actually requires state Medicaid agencies to collect encounter data from managed care organizations. And I thought they were talking about eventually, if not now, having them submit that data to HCFA as well.
DR. AMARO: So my question is, this is already required under a different format, but the data are required and collected and reported. And so I'm just wondering how much the OMB issue is going to be.
MR. HANDLER: I think there are some HCFA forms that have OMB clearance. So those are covered. But we're talking about something that doesn't have OMB clearance.
MS. COLTIN: All the data come in on HCFA 1500 or 1450.
MR. HANDLER: Well, that has OMB clearance.
DR. IEZZONI: I hate to move this forward, but Paul has just notified me that is going to have to leave at 3:15 p.m., and I want to make sure that our group has an opportunity together to consider the remainder of the recommendations.
Are there any other comments on this particular issue?
DR. STARFIELD: There are. The two last sentences in the first paragraph I just don't understand, and it sounds dangerous to me, because we talk about states sharing relevant data. And you were just into the privacy issue in spades when we said something general like that in there. I wonder, do we need that sentence.
DR. IEZZONI: We're the ones who can say we don't. So we don't?
MS. MARKUS: That was in response to the conference call last Thursday.
DR. IEZZONI: Because Anne is responding to us here, guys. It's our job.
DR. STARFIELD: It's the next to the last sentence that I think should come out.
MS. COLTIN: I can tell you what that's about. I actually had asked to have that put in when we were going through the model contract language. That is because what we see happening a lot is that we are asked to monitor quality and report on measures that we cannot report on without that data.
So if a Medicaid agency carves out pharmacy data from our benefit package --
DR. STARFIELD: That's the last sentence. You are referring to the last sentence?
MS. COLTIN: No, I'm referring to the sentence you are referring to that begins, "In addition, states should share." We cannot identify the diabetic population reliably without pharmacy data in order to measure quality of care for the diabetic population. So if the Medicaid agency will not share with us the pharmacy data for our Medicaid enrollees, we can't produce that quality measure.
So what we were talking about, and the way this came out in the full report if I remember, is that we said when the Medicaid agencies require plans to report on data or measures that must use this type of data, that they need to be prepared to share that data with the managed care plan. Otherwise, you are in a Catch 22.
DR. STARFIELD: I think if you say it that way, it makes sense.
DR. IEZZONI: Anne, have you got that then for revising it? Great. Thank you. Any other comments on those two paragraphs under item five? Okay, let's move on to public health data.
MS. COLTIN: Just one more. I wasn't clear what you meant when you said prime contract? I think if you just say MCO contract, that you are getting at what you are trying to say, the same standards as would be in if it was a carved in service under the MCO contract. I wasn't sure what prime introduced.
DR. IEZZONI: Great. Let's move on to public health data, which is a long recommendation.
DR. STARFIELD: It's really out of proportion long.
DR. IEZZONI: Okay, Elizabeth, this sounds like one you have thought about.
MS. WARD: I kept re-reading the first paragraph. We have two ideas here. One of them is -- she has this in good words to make it clear -- we want to impose on the managed care organizations, that they do something directly. Which I think sounds like they become the reporting entity. Or we're simply asking managed care organizations to remind and try to encourage their contract providers.
If that is what we are saying, I think you could say, sure, that makes sense. If we tried to, as a managed care organization, now get involved in intervening in the reporting requirement of reportable conditions, it will make the system even worse.
MS. MARKUS: No, the specifications are clear about that. It's an option. Some states do require MCOs directly to be the point for reporting purposes.
MS. COLTIN: In fact, the part that I like the most is the last sentence in the second paragraph of the next page, which is recommending provider infrastructure concerns, electronic data interchange, and other things. Those are the things that are probably, from what our state and other states are doing, is going to make the biggest difference, is to make reporting by providers easier and more logical, and less cumbersome.
When you go and do surveys of providers about why they don't report, it's usually that the health department has 12 different phone numbers that they are supposed to report to. It's the public health agencies in many cases that have made this reporting really complicated and confusing. And that is why we are funding electronic reporting system around the country, is to try to make it more simplistic.
DR. IEZZONI: So how should we revise this particular recommendation then?
MS. COLTIN: This is the one recommendation that I really feel strongly opposed to in terms of option one. I feel fine about option two, but I do not at all agree with option one. I do not think that we want to turn managed care organizations into public health departments, and tell providers let's see, if your patient belongs to this plan, instead of notifying the department of public health, notify the plan, and then the plan notifies the department. Why do you need that middle man.
DR. IEZZONI: We as a committee have just agreed to X that. So are there any dissenting views? There are two committee members who have made compelling cases, so we X that. But we do encourage what Elizabeth was pointing out about state Medicaid agencies maybe assisting with provider infrastructure concerns to reduce duplicative reporting.
And Kathy, Elizabeth, who said that there are some states that now require the MCOs to do this reporting?
MS. WARD: I don't know.
DR. IEZZONI: Do you know? Because, Anne, there are a few from your study.
MS. MARKUS: This gets into the specs, because it is actually building on actual language.
DR. IEZZONI: Well, we hear a very strong opposition from the subcommittee on this.
MS. COLTIN: There is a case where this gets confusing. And that is in a staff model HMO, the HMO or the managed care organization is the provider, as well as being the plan. I think it's fine to say when the MCO is a direct provider organization, as in a staff model center, states may wish to require -- but I think that's the only situation.
DR. IEZZONI: Okay, well, we're the subcommittee. We can make the decision here. It sounds like we have. Other comments on that one? That's pretty clear I think actually.
Then number seven, respect for enrollees' privacy. Why don't we look at the language here and see whether subcommittee members have any specific comments on it. Look at Bob's suggestions.
DR. NEWACHECK: Did he comment on this or the contract report?
DR. IEZZONI: He commented on the contract, but it certainly is relevant to this.
DR. STARFIELD: Well, I think your suggestion to put it up front is the way to go.
DR. IEZZONI: Yes, put it into the context piece. Not have it be a specific recommendation. It should be a given in every aspect of the health care field. So remove it from Medicaid. Because as Hortensia has often reminded us, there are stigmatizing issues by isolating privacy for a particular subpopulation. So why don't we deal with it that way?
DR. NEWACHECK: So would you move just the first paragraph, because I don't think in the context discussion, we don't have quotes from the contract specifications.
DR. STARFIELD: I think the detail is too naive in the context of committee discussions. So I think within the context we put it consistent with committee discussions and decisions.
DR. IEZZONI: Right. And I think, Anne, that on this vetting process of the contract language, vetting with all the members of the subcommittee on privacy, like Richard Harding and Kathleen. I think it's going to be really important to run those sections by all of our committee members, so we can get their views up front before we have public forums in which we're all kind of back tracking furiously.
Dale?
MR. HITCHCOCK: I don't understand the reference to 42CRF part 2. Are you saying in effect that that would be a model by which other aspects of health care information would be protected similarly as it is in the other model?
MS. MARKUS: No, I think this is just repeating the federal regulations and what they require in the contract.
MR. HITCHCOCK: Only applying alcohol and substance abuse?
MS. MARKUS: Right, for instance states, as it relates to alcohol and drug abuse.
MR. HITCHCOCK: Is it actually just one of the applicable federal or state laws?
MS. MARKUS: Right. Well, it's one of the applicable federal requirements. It's just repeated in this particular sentence.
DR. IEZZONI: So Dale, we are not going to have in the recommendations, this specific language. We are going to remove that from our recommendations here. We are going to take the privacy discussion and put it as a contextual piece up front. And in the draft contract language, where it talks about privacy, Anne is still in the vetting stage, and we still have to hear from people about how they feel about some of that language. So hopefully, we'll get a lot of input about that.
And you certainly should look at the contract language too after you finish the insular areas report.
MS. RIMES: And I think there will be another version.
MR. HANDLER: Can we get to the question of unique identifiers?
DR. IEZZONI: I'm anxious to try to move forward here, and we'll get to that. Elizabeth?
MS. WARD: I think in that context of confidentiality, you also have to conclude the security discussion. Because one of my major issues, and certainly what we're trying to fix in our state is the no one wants to break confidentiality, but the way they have things stored, and the way they are transmitting data and matching data files is not secure, and you cannot promise confidentiality.
Regardless of how much you want to say you are being confidential, you are not, because of the security systems. And relevant back to the security standards. I just want to make sure we are talking about both of those.
DR. IEZZONI: Yes, that needs to be up front too, privacy and security. Okay, those were the recommendations pertaining to the contract language. Then the final two recommendations we heard very clearly from the field about need for training to increase staff analytic capacity. That was absolutely again, a consistent message that we got.
It kind of feels a little lonely having it be this little paragraph. But we have to help Anne. This isn't Anne's fault that this feels lonely here. We have to help her. Are there other kind of concepts, phrases, suggestions that we can add here? Or is it really as terse and brief, because it is pretty straightforward what we are suggesting.
DR. MILLMAN: I did a site visit in Missouri with the state health department --
DR. STARFIELD: That's where you were the last few minutes.
DR. MILLMAN: No. And the Medicaid agency has a relationship with the state health agency to provide a lot of data support. That's the notion of data linkage too. So that could be an addition. It's an alternative, instead of trying to develop solely within the context of Medicaid agencies, which are bill paying agencies to a great extent; link other state agencies.
DR. IEZZONI: Elizabeth, how do you feel about that?
MS. WARD: Instead of just saying the federal government, in partnership with the private sector, you could say also in partnership with other agencies and academic settings. There are other ways of them getting to that kind of analytic training.
DR. IEZZONI: This is another area that Paul's comment on the insular areas report kind of comes up, because we are talking about spending money again, making an investment. So I think to the extent that we can be flexible about using other analytic health resources in states.
Kathy, do you have comments about how we can beef this up?
MS. COLTIN: You are talking about the analytic capacity?
DR. IEZZONI: Yes, the analytic capacity recommendations.
MS. COLTIN: We had talked once about the public health traineeship grants being a really good vehicle for helping to train people in public health data techniques and analytic techniques and so forth, and sort of lamenting that they had fallen by the wayside.
DR. IEZZONI: Do you know, Mike, whether the public health service scholarships are still available?
DR. MILLMAN: They are pretty much gone.
DR. IEZZONI: They are gone, completely gone. Okay.
MS. WARD: Wasn't it Massachusetts who, on that site visit, showed really good program they had created? I don't know whether it's so good that we would want to try to go back and recommend that there is one training program that could be disseminated, but I was really impressed by what their partnership with that training program. They had one that was active, as I recall, but I may be making that up in my head.
DR. IEZZONI: I don't remember that. Do you remember that?
MS. COLTIN: Vaguely I do remember them talking about something like that. I thought I did remember them talking about something. We should go back and look at that.
DR. IEZZONI: Okay, but the basic point is try to be creative and use existing resources to the extent that we possibly can. But to consider reinvigorating public health service type scholars to train specifically to improve analytic capacity for looking at data analysis relating to public health and health services.
Paul, you look like you have a comment.
DR. NEWACHECK: No, I agree with you. I think maybe another example I want to bring up is this more recent notion of learning collaboratives, where there would be a venue for analysts from states to get together to learn from each other about analytic techniques and approaches to looking at data. And that sort of thing might be another example.
I think to help strengthen this would just be providing several different examples of what this technical assistance might be.
DR. IEZZONI: Such as? Help Anne with examples.
DR. NEWACHECK: Well, you just mentioned one, the learning collaboratives. Maybe developing some kind of templates for analysis would be another one, evaluation templates, or something like that, that could be used by the states to do certain standardized analyses.
DR. IEZZONI: The kind of tool box analogy that the Healthy People folks are developing for 2010, so states know how to do 2010. They should develop tool boxes for analyzing. This is something that we could ask HCFA to do.
DR. STARFIELD: What about things like the program that AHCPR has? It's mostly academics, and you pay them to sort of participate in analyses that are being done. I don't know what you call them.
MR. SUMME: The fellowship programs, if you are referring to the same one I'm thinking of.
DR. NEWACHECK: There is the IPA program.
DR. STARFIELD: An IPA-like program.
DR. IEZZONI: What is the IPA program?
MR. SUMME: IPA is where general industry pays the person's salary.
DR. IEZZONI: Well, that sounds like it would be a rare resource, and probably not help a lot of people.
Hortensia, you work with the public health folks in Massachusetts. Are there any suggestions that you would make?
DR. AMARO: I think that this idea of a tool box of sort of templates for analysis for analyzing data and putting it into good format for reporting out every year to the mayor, to the commissioner, and the analytic strategies to get there. So I can see a whole tool box that would identify the data sources, that would talk about analytic strategies and issues and challenges, and how do you present it and disseminate it. The whole thing, which is usually what staff are faced with.
And sometimes there are different issues, but at the national level there are some good models, and states that have good packages that, with a little bit of work at some federal agency, they could develop tools that would be really helpful for state and local health departments.
DR. NEWACHECK: And I think our notion of a standardized data set, or whatever we are going to call it, of data will facilitate this effort. Because if there is in fact a set of 50 variables --
DR. IEZZONI: We should tie this recommendation to our standardized set of data elements?
DR. NEWACHECK: Yes.
DR. IEZZONI: Okay, so that would be good.
MS. WARD: What we heard was that they have to take that out of their very small -- data states have to take that out of their very small administrative portion. That's why I remember Massachusetts. They dumped some of their own state dollars into that to go do it. That's why most of the states aren't doing it. They can't afford it. So if you could have one centralized assistance to them, maybe you might get it.
DR. AMARO: I was going to add that this whole project could be done, even within the context of state Healthy People 2010 objectives. That could be one sort of track of tools developed. Another one may be your more traditionally sort of surveillance data report that you would want to put out. You could have sort of a tool box for those generic ones. That in states where you had special populations that you would want to look at, you could even have the profiles for how you would do those kind of things. So you could do it in a lot of different ways.
DR. IEZZONI: We also talked earlier about translating CAPS for example. Locales, different states shouldn't each have to recreate the translation. That there should be some central repository of translated surveys, as well as the tool box for kind of analytic formats. So trying to have some central place where analysts and people who have to decide on methods, and states can go to get access to tools.
DR. AMARO: Is there a place where technology transfer resides that would be sort of a natural recommendation to target this to?
DR. IEZZONI: Is there any such beast at HCFA?
MS. RIMES: Other than the Internet, no. But AHCPR has some repository.
MR. SUMME: There are some Websites and so on, technology transfer.
DR. IEZZONI: There could be a Website. That would be a good idea. That we would propose a Website for analysts. A technology transfer Website for analysts for Medicaid managed care analysis, that would include instruments. It would include this tool box. Who would run it and monitor it, and pay for it?
MS. COLTIN: It seems like what you are talking about is technical assistance that HCFA commits to provide to these sorts of things. How could that technical assistance be provided in a way that would better meet some of the needs that the states expressed, than whatever it is they are doing now?
And part of it is that the states are having -- they are sort of at the end of the food chain in terms of recruiting trained analysts because of the salary limitations and all. And so to the extent that they could hire bright people out of college and train them in analytic techniques, they need the wherewithal to be able to do that.
The government is starting to use video conferencing. We were talking about the progress reviews on Healthy People 2000 and so forth. Video conferencing is a great vehicle for allowing states to put people in a virtual classroom to be trained. It can be very cost effective. We could encourage them to do something like that.
DR. IEZZONI: This sounds good. I think, Anne, what we should have in this recommendation is just kind of a list of different options. Just going through what we just talked about. Are there other suggestions?
MR. HANDLER: The biggest contractor to the Department of Health and Human Services is a company in Rockville called Westat. They have close to 1,000 employees. And it's a company owned business. My wife works there, my daughter works there, my sister works there. But they can provide all of these technical assistance activities, but they have to get paid for it.
DR. IEZZONI: But we are not going to specify a particular organization.
MR. HANDLER: But a think tank-type organization that does analysis and data collection and data processing. It just takes money, that's all.
DR. MILLMAN: The other thing that is happening is the Medicaid management decision support systems are making it easier to do some of these. You don't have to have basic programmers to do especially more routine kinds of analyses. So that development too sort of helps change what the work force might need to look like.
DR. IEZZONI: Okay, let's move on to the last one. The last one I think is kind of a political statement, as well as something that we also heard especially from the consumers in the field.
DR. AMARO: Should we strike it then?
DR. IEZZONI: No, but I want your feedback. What do you think about the last one?
DR. STARFIELD: What this begs is who should be identifiable.
DR. IEZZONI: Don't look at Anne. Anne has just given us the straw person. We are the decision-makers here.
DR. STARFIELD: Before I go any further, did we suggest this one?
DR. NEWACHECK: Yes.
DR. STARFIELD: We did? We just can't come out and say plan information should be public. We just can't say that. We didn't even say plan. We say Medicaid managed care data. We don't say what kind of data.
DR. IEZZONI: Well, it's summary reports on performance. Isn't that what we mean? I don't think that we mean individual data elements.
DR. STARFIELD: Would we mean the plan is identifiable? The providers are identifiable? Who is identifiable?
DR. IEZZONI: I would like to know whether Harvard Pilgrim is as good as Tufts(?).
DR. STARFIELD: Okay, then we've said the plan is going to be identifiable. Do we want providers to be identifiable?
DR. IEZZONI: Not necessarily.
DR. STARFIELD: Okay, that's good.
MS. COLTIN: Where you stand depends on where you sit. I think on this one, where a plan is a purchaser, we find that when we are trying to look at quality of care across our provider network, we are only able to produce quality measures on about one-third of the individual doctors, because so many of them have a very small number of our patients.
But if our data could be combined with data from Tufts and data from Blue Cross and others, and then resorted by provider, we would all benefit from having that information in a standardized format. So I wouldn't jump to say that --
DR. IEZZONI: Well, what we have here in the sentence is summary findings relating at access of plan performance. We don't say individual provider, we say plan performance. Do we want to revise that?
I think that one of the problems in the first sentence is that we use the word "data". The word data suggests that data files. What we mean is kind of reports.
DR. STARFIELD: Summary reports.
DR. IEZZONI: That would clarify it. Summary reports be in the public domain.
MS. COLTIN: Wait a minute, before we jump to that, I want to consider that I thought there were really two things here. One is the summary reports which could be at the plan level, could be at the provider level, because consumers really would like to have data at the provider level, to help them choose a doctor. And I would support saying plans and providers.
But in terms of the first sentence, I thought what we were thinking about was uses of data for approved research in conformance with government regulations for human studies and so forth, just as HCFA makes Medicare data available for research, and that is at the individual record data with adequate privacy protection. That we were saying that these data should also be available for bona fide research.
DR. NEWACHECK: I think that's right. I think that's where the recommendation was originally made.
DR. IEZZONI: Well, let's put that at the back. I think that we didn't talk about that in the conference call last week at all, so I had forgotten that we were heading in that direction. I think that I'm a health services researcher, so obviously I would have a vested interest in having this information available. I think that we need to say for approved research projects that have conformed with federal IRB type regulations.
DR. NEWACHECK: I think also that the data should be available for advocacy groups to use for example, to do their own analyses of how well say Medicaid managed care is doing, within the same requirements. That is, they have to meet the same standards that anybody else does.
DR. IEZZONI: Okay, let me just say I think Kathy's statement about how small Harvard Pilgrim's Medicaid managed care enrollee base is, let me just point out to you that Harvard Pilgrim is the biggest managed care company in Massachusetts. Given that they have such small numbers, I would just be so concerned about individuals being able to identify individuals.
MS. COLTIN: Massachusetts is a very atypical state, because 80 percent of Medicaid enrollees are in the state's primary care clinician plan. In fact, that's of a year and a half ago. It's even more now I believe.
DR. NEWACHECK: We can build in standards, like minimum sample size is required to protect confidentiality.
DR. IEZZONI: Okay at a zip code level and things like that. I think even in Massachusetts we have been looking lately at number of people by zip code, and it's amazing how you can get very close to identifying individuals once you know things like that.
So I think we should talk about also having striped down versions of data sets made available, with specific variables that could be very identifying, such as zip code, being removed. So this is a big deal. And this is a big change. Do we want to recommend that we make basically the raw data, with some censoring for confidentiality protection, available to the general public?
MR. HITCHCOCK: With informed consent?
DR. IEZZONI: Informed consent by who?
MR. HITCHCOCK: The patient.
DR. IEZZONI: You can't do that.
DR. AMARO: The transaction data now, those data sets are available, correct, for research purposes?
MS. COLTIN: Each plan has its own procedures for what information.
DR. AMARO: Doesn't HCFA have data --
DR. IEZZONI: On Medicare, but not Medicaid. Only in a limited number of states.
DR. STARFIELD: But you can use claims data in states, but the state will strip.
DR. IEZZONI: Right. It's not every state.
DR. AMARO: Okay, but I mean there is some precedent for using claims data for research?
DR. IEZZONI: Yes.
DR. AMARO: We're not totally charting new ground.
DR. IEZZONI: You were interested in doing research on the surveys too. I'm not beginning to remember where this came from, and I remember it was the service stuff that you were especially interested in.
DR. NEWACHECK: The way it works now, like for example with all the CAPS surveys that are done as a part of HEDIS is that those belong to the plans or the state Medicaid agencies, and they typically release the information they want to release and nothing else. And if it doesn't look good, they don't release anything at all in some cases. To me, that's not very accountable.
I would like to see this recommendation relate to making the data available so that the plans are really accountable in some way, more than they are now.
MS. COLTIN: Actually, we could make the recommendation that state Medicaid agencies participate in the national CAPS benchmarking database. There is a database. It was funded by the Robert Wood Johnson Foundation. And most of the states that are collecting data are participating and providing their data, so that it is there, and it can be used for research. I know that we have already had a couple of research applications to use it.
But what isn't there in great part are the data that the plans are collecting on the commercial side. I don't think we can address that in this report. We might be able to address it in some other vehicle. But we could start here and say that we would encourage state Medicaid agencies to provide that data to the national CAPS benchmarking database, to be used for approved research, including data that is submitted to them by plans, in those states that require the plans to do it.
DR. STARFIELD: Well, this discussion is very helpful to me, because I didn't understand where this was coming from at all. Now I understand the context.
DR. IEZZONI: There are two recommendations though. One is that reports on plan performance be made public. And the second one has to do with the raw data appropriately stripped of individually identifiable information, including not only encounter records, but also surveys.
MS. MARKUS: Then I would suggest that this be moved in the model contract language, because there are a bunch of provisions addressing just what you talked about. But it wasn't clear at the time when I was drafting this, that's what you were referring to.
DR. IEZZONI: Okay.
MS. MARKUS: There is something about access to raw data, access for audit purposes, and things like that in the contract too.
MS. RIMES: This might fit fairly well up into the -- we moved the privacy provisions, and this again is not that different than other types of data. There are research issues with all data.
DR. NEWACHECK: But these are a set of recommendations. So we said the contracts was going to be primarily a discussion of the rationale for the recommendations that followed. If we start moving our recommendations up into that section, it is going to change the tone.
DR. IEZZONI: Yes, I know. I am a little concerned about that, Anne, because I think the contract could be a lightening rod for some people. It will be. So I was going to talk to you a little bit about this off line. Whether maybe we should come up with different words, like recommendations around specific data issues. And have some of them be tied, referenced back to the contract.
But I think organizing our recommendations around whether they relate to the contract or not could make people who are uncomfortable with the whole notion the contract, disregard some of our recommendations. Do you see what I'm saying?
How do other people feel?
DR. NEWACHECK: One of the things in reading through this, and I just saw it today for the first time, is I like the fact that our recommendations now have a little more meat to them, and a little bit more substance to them, and they are less wishy washy than they were originally.
DR. IEZZONI: Or non-existent.
DR. NEWACHECK: But I as concerned that there are long sections in here that are quotes of contract language that I think could turn off some readers, sort of like this is too technical for me, or too detailed for me. I think one way to deal with that would be to just refer to those sections let's say, or to have them be footnotes to this that would immediately follow it.
The other way would be to put the contract language in italics so that people could sort of see when there was a quote from the contract language, that it was distinct, and they could skip over it if they didn't want to get into it or whatever. But it sort of a little bit I think from a non-lawyer perspective, off-putting. We hate to see people say this is too technical, and stop reading it.
DR. IEZZONI: I think that you're absolutely. Anne, you're not used to writing recommendations for committees like this. So you don't know that bullets and bulls and italic and all this stuff is really important so the average person can read things. But I think that Carolyn, you and I can work with Anne to make the format -- and I agree completely, Paul and Kathy that we need to try to link to the contract, but not highlight the links to the contract.
In the executive summary we may not want to link directly to the contract language until the very end, because I think that as you witnessed earlier with Bob's response, that even though we like the contract and recommend it, that a lot of these recommendations frankly are independent of the contract, and we would recommend regardless of the contract.
MS. MARKUS: Well, that's the way they were framed before they were moved into sort of the framework of the contract.
DR. IEZZONI: Well, we have changed our mind once again. But you are very lucky, because this looks like our final word. People are packing up suitcases and things like that. So even though we have proof that we can be internally inconsistent even on the same day, we're going to be leaving town.
Can I just wrap up? How do people feel about this? Do you feel that we're ready to kind of with revisions, move to making our recommendations before the full committee?
DR. NEWACHECK: I think it's a great report, and I think our discussion today has helped to sharpen it. I think the recommendations will come off real well right now. So I'm pretty pleased with the process.
DR. IEZZONI: Okay, so what we'll do is, Anne, you will talk with Carolyn about when you can get a revision. Kathy will be presenting this at the June meeting, June 22nd, 23rd, whenever it is. I would like to have our full subcommittee have a chance to look at this before it goes. So we should try to get it done by June 1st or so, so people can have a few weeks to look at it.
Then what we will do again, like we are doing for the insular areas report, is that we will ask the full committee to agree to move the recommendations on to the secretary, with us doing the final revisions.
Kathy?
MS. COLTIN: How does that time schedule fit with the vetting process that we talked about earlier? I would be reluctant to move that this go to the secretary or in fact be adopted by the full committee in the absence of public comment on some of these things. So I think we have to be aggressive in trying to get this out to the field for comment as soon as possible.
DR. IEZZONI: Because if we don't do it in June, we're going to be waiting until the end of September, and it really is beginning to feel --
MS. COLTIN: It's fine with me if the next draft comes to us, and goes out to the field at pretty much the same time, or within a couple of days. That we just look at it, or a couple of us look at it to make sure that the changes are consistent with what we agreed to today, and then get it out there quickly.
DR. IEZZONI: So I guess Sara is the person who is doing that. Is that true, Anne? Yes. So, Carolyn, you are going to have to talk to Sara. I'm sure that she probably is motivated to wrap this up too.
MS. RIMES: I think we've got a couple of other agencies involved in it. So we'll chat about it, and see what is feasible.
DR. IEZZONI: All right, great. Anne, thank you.
The committee theoretically has another 15 minutes to meet. Anne, can you stick around? Not necessarily at the table. You can go get yourself a cup of coffee or something. I would like to just talk to you briefly after the meeting is over.
Gerry Hendershot came in the room. Hi, Gerry. Were you coming to talk about our next initiative, because we have spent a little bit longer on this than we had hoped.
DR. HENDERSHOT: I was just interested in hearing what your plans are. That's the part of the agenda that I came for.
DR. IEZZONI: Well, that's what I was afraid you were going to say, and I was going to say, oh, no, you made this trip for nothing. Hortensia will be rotating off the committee, so she is not really involved in these discussions, unless she would like to be, and we would welcome her. But I think she probably would like to catch the next available flight to Boston. She is nodding.
DR. AMARO: Great, I was getting read to go.
DR. IEZZONI: So do we have a quorum? So now we have four of us. Can we legitimately talk?
MS. RIMES: We can talk, but we're not really formal any more.
DR. IEZZONI: So, Gerry, do you want to come up to the table and join us? Anne, this will just take a few minutes, hopefully.
I think the committee members know that we have a working group on quality that will be pursuing more on the Medicaid managed care, and a lot of us are members of that. So what I'm going to talk about right now is not what the working group is doing, because Kathy is in charge of that, and she can tell you, maybe not today, but the next time that the working group meets.
So what I'm about to talk about is what the full subcommittee has kind of chosen to do for the next year as its major initiative. That is look at that pesky place holder that we have in the core data elements from 1996, that was called functional status I think and health status. We always said how important this was, but how the field was just not ready to specify exactly what we meant by that.
So what we are hoping to do by the end of next year is maybe not to recommend explicitly what will go into that place, but my current thinking, having talked to some other people is that what we will probably recommend is a demonstration project, or several demonstration projects that the government should pursue.
The one thing I am hesitant to do is recommend, okay, everybody go out and use the SF36(?). Or everybody go out and use some other data instrument, because I just think that belies the complexity of this activity. I think we are only going to be in the position to recommend demonstration projects or testing. It's kind of like the HEDIS measures have testing sets to kind of spend a year looking at how they work before you can really admit something.
So what we are hoping to do is ask Lois Babruk(?) to do a subcontract for us, basically collecting for us information about what other people are doing about collecting information around functional status. I want to emphasize that we are talking about functional status along a variety of different dimensions, although we are not including mental health dimensions in this. It would just get to be too enormous if we included cognitive and mental functioning. So this is more kind of physical functioning, to try to be more specific, although we will have to be absolutely specific that we have eliminated -- or we're not looking at mental health and substance abuse and behavioral considerations in doing that at this point.
MS. COLTIN: Lisa, in MDS there are measures around cognitive function and dementia and so forth. Are you including that as something we're not going to look at?
DR. IEZZONI: Well, you know, Kathy, we have to -- this is going to be a big undertaking. We have to cut it somehow. So at the last meeting we kind of talked about this. I think it was in February at our breakout. I think that people felt that there was a fairly clear way to break it at that point, because otherwise it would get just to be too huge.
And the kinds of people that we would have to involve in looking at the issues would be different people. And I mean we can revisit this halfway through the project. We could say this just isn't working. We need to think about behavioral health, cognitive functioning as well.
DR. STARFIELD: There is a distinction between the cognitive and the psychological. Most health functional status instruments do include some psychological aspects.
DR. IEZZONI: We can make that distinction then. If we can feel comfortable that we can draw a bright line between psychiatric disorders and cognitive functioning, then I'm okay with that. Because I tend to agree with you, cognitive functioning and physical functioning go hand in hand. But so do psychiatric disorders and physical functioning.
The thing is I need to feel that we can draw bright lines and parameters around this, because I know as a subcommittee chair that Carolyn and other staff people like Gerry are going to start asking me to write the letter of invitation to the people who are going to be presenting. Once you start having to do things like that, you have to get really specific, or else people just really don't focus on what you are interested in.
MS. COLTIN: I don't know what the appropriate terminology is to draw that bright line, but one possible way to think of it is the emotional versus the cognitive.
DR. IEZZONI: Suspect that there is going to be some blurring. So I mean this is actually something that we could ask our contractor to help us think about too, how this would fit in. But even if all we did was physical functioning, because keep remembering that we want to include kids. We want to go from cradle to grave on kind of physical functioning.
Once you start talking about involving infants, children, the milestones for physical functioning for the tiny babies and young children are going to be so different than they might be for adults, that the complexities just begin to really compound themselves. So we are going to have to draw some bright lines.
DR. STARFIELD: I think we probably will want to ask the contractor to dig into this. In kids, there just are no physical functioning measures, basically.
DR. IEZZONI: That's right. So that's why I think what we are going to recommend out of this is say go out and use the kid equivalent of SF36, if there is such a thing. It's going to be we have to spend time researching this. We have to do a demonstration on this. It's going to be more kind of -- our committee recommendation I suspect will be more a process for our nation addressing these kind of issues.
Now we have wonderful resources. We have this interagency task force. I'm not sure whether task force is the right name, but on disability statistics, that is meeting every month I think, isn't it, Gerry?
DR. HENDERSHOT: Yes, they meet monthly.
DR. IEZZONI: You've got this great Internet communication that comes to those of us on the list serve, that tells us all the people who are involved. Can you just briefly list the agencies?
DR. HENDERSHOT: Well, this is an activity that is under the sponsorship of the National Institute on Disability and Rehabilitation Research, which is in the Department of Education. There is legislation that gives them chairmanship of the interagency, interdepartmental committee on disability research. They have a subcommittee on disability statistics, which has been meeting monthly for about 15 years now.
In the last couple of years the co-chairs, one of whom is at NCHS and the at NIDRR, have built a video network. There are eight different video sites that are linked together for these monthly meetings, plus a telephone call in capability, which means that the meeting is attended by people all over this country, and some international participants as well.
It's been a very effective way of keeping that research community aware of new developments in the field. And it is a resource that has been used by other people to get out the word, or to recruit various participants for other kinds of activities as well. It is a list serve that goes along with it, and the monthly maps and announcements are sent out to I think it's about 1,000 people now.
So that's it in a nutshell. It's probably 40 or 50 agencies that have attended at least some of the meetings, and there are probably a dozen or so that attend pretty regularly.
DR. IEZZONI: So what I was actually thinking of as our first foray into this was seeing, Gerry, whether we could get some of the leading participants in that group to come and talk to us about what they view as the biggest data gaps in terms of being able to get information around physical functioning.
Again, we don't want to be so specific to disability that we pigeonhole ourselves, because there are so many definition issues around who is disabled. But I still think that this group is the group that deals with ICIDH issues in our country, which I think we're going to have to address in the subcommittee work.
So they would be a great group of people as our first kind of foray into this to kind of tell us what their thoughts are about where the gaps are, and what might be feasible to think about for plugging in our placeholder on the core data elements. So that would be the first thing.
We're going to have the subcontract who will be working by our side. I also would like to hold maybe actually two hearings with advocacy groups from the community, from the adult disability community and chronic disease community, as well as from kids. This is how I was talking to Paul during lunch about who might be good people to come and talk.
I want to hear from them, do you want people to collect information about your functional status? Would you report it honestly? I'm not I would necessarily under today's situation. What are your specific privacy concerns? To really try to hear from the field. And then to have that be kind of a second thing that we would do.
Then we would also want to hear from researchers and provider groups about measurements, because I think measurement of these quantities is really, really difficult. I know from the physician community that my primary care colleagues are terrible at assessing functional status. I would not trust them on doing a functional status assessment. They are not trained to do it. Medical school does simply not train them to do it.
So who does this assessment? So we need to hear from provider organizations and from researchers who have done studies on this topic. We need to hear about medical training, about training of nurses, about how you do functional assessments.
So we can think about should this be person self-report, or should this be something the provider would list on the encounter record? Again, I wouldn't trust what a provider would list on an encounter record around functional status. So that would be kind of a fourth thing that we would be doing.
Then the final thing would be us trying to gather together and think about what a demonstration project, or what should be the lines of investigation that we would recommend to try to plug in that placeholder? Again, I don't think we are going to make absolute, definitive proposals for doing it, but I would like to at least have a research agenda, maybe with specific agencies in mind. Even maybe thinking about the resources that it would.
Jim, AHCPR is due for a big increase in funding. Medicine and health have been throwing numbers around that just make you salivate. So thinking about how to actually accomplish the research that would be needed.
So that was my thinking on having talked to some of you. I have talked to Vince about it. I have talked to Paul about it. I talked to Carolyn about it. So how does that sound? Does it sound okay?
MS. COLTIN: It sounds fine. I have a question. When you are talking about trying to get feed back about what consumers or patients are willing to tell you, and how they feel about this, I suggest that you kind of divide that population into those with permanent disabilities, and those with temporary. You may get different viewpoints.
So that studies that have been done on people who had hip replacement or knee replacement that tracked their functional status, who have eventually returned to their normal life, have a different attitude about the value of that.
DR. IEZZONI: And so that's why, Kathy, we are going to have to hear from all of you about who you think we should contact. And so what I have just sketched for you is kind of a journey through the air, if you will, in a thumbnail sort of way.
Gerry, are you helping us with this project?
DR. HENDERSHOT: I have participated in a couple of telephone conferences.
DR. IEZZONI: Because I know that you are so involved in working with Dan Friedman on other things. But we are going to have to think about the staffing for this project, and who can really kind of be the point person on it, because we should get started.
And some of you might know that Patrice has been trying to poll you for meeting dates for this summer. What I thought we would do this summer, if we got a meeting date, is to work with the federal agency people that Gerry talked to you about earlier from the interagency group on disability statistics, hoping that they would be around.
Patrice, I don't know how much luck you are having in trying to get dates from people for this summer.
PATRICE: Well, actually, I just really married up your schedule with Carolyn's schedule. And we've got a new system in place, which is to use the contractor. What I have to do is get the dates to the contractor, and the contractor will actually be contacting the members with like a set of dates, and then get back to me.
DR. IEZZONI: We're getting a little late for the summer, to be quite honest with you, which is making me nervous. Carolyn and Gerry, you need to tell me what the drop dead date would be for trying to get folks like Paul and other people from the interagency working group together? Because if we are not going to be able to put together an effective day, really full day for this summer, we should just be starting to think about the fall. But maybe Patrice and Carolyn and Gerry, you could let us know how things are going.
And Patrice, let the contractor know that we want to kind of know this as soon as possible, because it's May 6th already, and getting close for the summer.
MS. WARD: I was just going to add, I think to avoid some of what happened today, that for the parts that related to confidentiality, we could let that subcommittee know, so they could maybe jointly sponsor that, or make sure that they know where we're going with that. Let me them know what the implications are of this next plan and what we're doing, and they could decide how they want to participate.
DR. IEZZONI: I think that there is going to be overlap with the computerized medical record work group as well, because if there is any thought that these data could come electronically, which I again wouldn't trust what the doctor is writing in the record about functioning, maybe I trust the nurses a little bit more.
MR. SUMME: They write better.
DR. IEZZONI: Not necessarily. And a lot of records are computerized now, so penmanship isn't the big issue. It's more the kind of like are they even looking at the patients? Are they getting them out of the bed, and seeing whether they walk? So I think that you need to keep reminding me about that, but you're absolutely right, that there will be some overlap with some of the other subcommittees and working group. And there's overlap also with Kathy's working group on quality on this too.
I'm excited about this, so I hope you guys will be too. It kind of feels tiring after we just completed our two years on other things.
But thank you everybody, and let's adjourn at this point.
[Whereupon, the meeting was recessed at 3:30 p.m.]