Secretary's Council on Health Promotion and Disease Prevention Objectives for 2010

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DR. BOUFFORD: Let me just open up this section by asking specifically--I think the number is 28 percent of the objectives, about a third of the objectives, we really don't have good data at this point, after 20 years. I don't want to overstate it, but what is the current--why don't we put that out on the table and talk about what you are thinking about that. What are those kinds of questions?

DR. FOX: I think one of the questions early on has been--there was again intent for the Healthy People 2000--that there not be any objectives in there other than ones that are measured. But the fact of the matter is there were some that were put in there with kind of a hope and a promise, and we still have a fairly significant number where we don't have even base data. We don't have any updates.

Our thought had been--and again we would like to hear the reaction of this council--but our thought had been for 2010 that we would try to hold the line and say that if we don't have a current way to measure it, if it's not something that's fairly certain or ironclad that will be available to measure, that what we might consider is to have a policy section--that we don't put those objectives totally aside, but that we have a section that would--it could even be a different document that would say, if we develop new data down the road, that these are definitely things, as a nation, we need to know around pediatric care, around maternal and child health, whatever, and that would be one way of going about it. But within the objectives themselves, we would try to keep that to pretty much the objectives where we have either data, or have some reasonable hope of data in the near future, but, again, open to comment.

DR. BOUFFORD: One of the issues obviously is the subpopulations question Ed raised, which is obviously a concern we've been dealing with all day.

Clay, do you want to jump in here?

DR. SIMPSON: It's of great concern, obviously. OMB Directive 15 has been dealing with it for two or three years now, and it's still something that I suppose--

DR. BOUFFORD: This is how the Census is going to count subpopulations.

DR. SIMPSON: Of course, our Office of Minority Health targets Hispanics. For African Americans, the data collection is not as bad as for Hispanics and Asians and Pacific Islanders, specifically. And for Native Americans, we hear recently, with 51 percent of the population in the cities now, it's going to be difficult to pick them up, too. So this becomes a concern.

I guess it's kind of a catch-22, also, if one thinks that perhaps it may be eliminated as a subobjective if you can't collect the data. And yet we're talking about, every day, the changing demographics of 2010 and the increase in the number of these individuals with the problem still being there. It just seems to me that somewhere we have got to petition Congress, someone to provide the funding that's necessary to get this done. I just don't think that we can say it may not happen, so we won't deal with it, or we only deal with those entities that we have information on.

DR. BOUFFORD: I think one of the policy issues that's come up, and we might want to talk about it--the Secretary established a Data Council to try to deal with some of these data issues within the Department. There was a subgroup set up on the issue of minority data, and they've recently brought forward a set of recommendations which basically have some "thou shalts" in it in regard to standards, if you will, for trying to collect information on minority populations for this Department. I don't know if there's been some thinking about the cost impact and feasibility around that. That report just came up last week, but it's been an issue of considerable concern, especially for a Department like this.

Ed, do you want to--the orders of magnitude, so people have a sense of what we're talking about here?

DR. SONDIK: I don't have an estimate as to how much it would cost to do that, but it clearly would be an increase in resources.

DR. BOUFFORD: We're talking about tens of millions at least.

DR. SONDIK: Oh yes, absolutely.

DR. FOX: The dilemma is that the movement in this Department, and maybe others--I don't know about the others--has been away from available and appropriated monies for data collection and more toward the use of one percent evaluation monies and even the in-house supplement that would provide data for 60 objectives within the Department, that there's no clear funding source. So we've having a tremendous amount of difficulty funding even the data instruments right now. That's not to minimize the need for subpopulation data, but the trend is going the wrong way as far as funding support.

DR. BOUFFORD: Phil.

DR. LEE: A couple of questions. One, I'm thinking about the local data, particularly. With the random digit dialing for the immunization tracking, there's a very large population that gets surveyed and only a small percentage of them have kids at the age of two. It's my understanding that they're now looking at using that to ask some more general questions that could be very useful at the local level.

The second question is--and I want just to hear a little bit more about that--the second question is, with the program-related data requirements that we impose on the States and the local governments--of which there are many-- is there some way we can say that a percentage of any one of those block grants or categorical grant programs, let's say 10 percent, or X percent, could go for the development of data infrastructure and not call that an administrative cost? Now it's thought of, I think, largely by Congress, as an administrative cost, not as a core public health service. Is there any way to move that forward?

DR. SONDIK: On the first point, I'm glad you're mentioning it, we have an experimental effort that we call SLAITS, which is based on this immunization survey which is done across the country. As Phil said, it uses random digit dialing and looks at 78 regions that actually cover the entire country. It was realized by a number of staff persons that we were really throwing away lots of calls in trying to identify the households with small children. We now have an experimental effort in which we're coupling that survey with collection of other information, which we're targeting on an experimental basis with getting information related to welfare. But of course, there's a variety of things we could get because we have access into these homes.

The thing that, really I think, is very interesting about this effort is that, because we're using a sample that's related to the health interview sample, which is done in person, we're able to assess the impact or the bias that comes from only going to households that have telephones. We can do that by asking similar questions in the health interview survey, which in fact we're doing. We have a number of States that have expressed a great deal of interest in this, and we're going to be experimenting with this over this year, and we have actually one percent evaluation funds to help us through that. If it proves out, then this could be a very useful source of information on a routine basis in the future, but we need obviously to budget for it.

DR. LEE: You're already calling them up?

DR. SONDIK: Absolutely, right.

DR. LEE: And all you do is ask them, do they have a two-year old kid or something, and if they say no, you hang up?

DR. SONDIK: Right, so this will be very useful.

In terms of taking a portion of these program efforts and building a data infrastructure--

DR. BOUFFORD: Dare we use the evil word set-aside, so that people understand the political impact of taking money away?

DR. SONDIK: But it may be that we don't have to view it as a set-aside per se, but view this as building this integrated infrastructure. You used the word earlier on integrated--meaning the integration of GPRA and so forth, but we also need--many years ago, it seems now, there was a hope for an integrated public health information structure, meaning integrated from the bottom up. I think we now have much more of a potential for doing that, given the technology and given Kennedy-Kassebaum and other efforts. So I think this is a possibility that we ought to pursue within the Department, and do it in the framework of Healthy People, using that as one of the prime motivations for doing this.

DR. LEE: One of the things we're trying to do in a couple of counties in California is to take the notion of a toll road, so you get private sector investment to create the information system. Then all the users, like the providers, the health plans, the health department, for a fee, can access that information. You have privacy protections and you have certain other public use authorities, so that it does serve a public purpose, but that might be another way to think about funding this infrastructur--to use that approach as opposed to a pure public investment.

DR. SONDIK: It relates again to the private sector.

DR. BOUFFORD: Marty, did you have a comment?

DR. WASSERMAN: I was just going to comment, if existing resources, which have already been budgeted and people are counting on them, then get diverted, it's just very hard to deal with it. So if you want to create a new system, I think you need new dollars.

I did also want to comment on--

DR. LEE: What you would say, though, Marty, is that you want to, you can, as opposed to forcing you to do it?

DR. WASSERMAN: That would be fine. It is awful difficult though to take money aside from the constituencies that are already there. I think we will probably find that out as we try to use some of the graduate medical education dollars to fund schools of public health, even though the fraction is minuscule.

I thought--when Ed was talking about the use of data and local governments, and wearing the hat that I used to wear as a local health officer and now as a State health official--I think you might use Dave's Public Health Leadership Institute, which has probably trained most of the State health officials, take common Healthy People 2010 data elements and work with the State and some of the locals that have had this training and maybe do a train the trainer, give us the capacities at the State level to then go down and use it at either county or regional ways. It seems to me a waste. We really do have some good data elements and we should probably agree on what it is we're going to measure and then have everybody try to measure it the same way. Then, to use the States perhaps to offer the technical assistance to locals or regionals.

DR. EISENBERG: I think what Marty is describing is a very exciting opportunity for the Federal government not to have to carry out this entire initiative from A to Z, but to set the framework, and to set the parameters, and to suggest the data that might be collected--to think about how it might be measured and to enlist the States and local governments in that same process. But I would go a step beyond that and think about the way in which managed care organizations are starting to think of themselves, at least some are, as population-based organizations, and advocacy groups, professional groups might also be interested in picking a subsection of the Healthy People initiative and say, we would like to take this one.

The challenge is going to be having somebody say what you just said, which is, let's sit down and decide we're going to use the same measures, and we're going to agree on what the metrics will be, so we can compare across managed care organizations, or across States or, lo and behold, compare a State and a managed care organization. I think those kinds of measures and those kinds of comparisons would be very exciting.

Then, maybe if we take that kind of consumer or customer-oriented approach to designing this, think about how they would use it to build on what Shoshanna presented us earlier, then we might be able to put something together that will be more usable in the long-term.

DR. BOUFFORD: One of the questions in this--in a sense we're trying to deal with the private sector businesses, and a lot of managed care organizations, especially in the more competitive markets, are in fact extremely interested in subpopulation information. I think it's an interesting question, whether that is potentially an avenue. Obviously there are variabilities around that, but in terms of looking for a resource--I'm not sure it's acceptable to abandon the need--obviously there's a resource problem--I'm not sure it's acceptable for us to abandon the subpopulation information, because if we don't keep pushing it and asking the questions, it's not going to happen. That was the sense of the Data Council group for the Department.

DR. EISENBERG: Of course, I'm not suggesting we abandon it, but it would be interesting to know, since I'm a newcomer to this, I can ask with naivete, whether the Data Council has had an opportunity to talk to the people who are developing electronic medical records and innovative mechanisms of collecting data that is real-time, involved in taking care of people, involved in their day to day needs and isn't collected for these purposes, doesn't require telephone calls, but would be available anyway through a well organized system of care. If we have certain kinds of measures we would like to see collected in those systems, now is probably the time to start telling them, these are the sorts of things we hope to build into your internal systems of data collection.

DR. SONDIK: There's a link between the Data Council and the National Committee on Vital and Health Statistics, and they have discussed that to some degree, but I think it would be tremendously useful to bring to the Data Council, in one session, a cogent, and as comprehensive discussion as possible, of the issues that Healthy People raises for the collection of this type of information, and raise that as a policy issue for the Data Council to deal with.

DR. BOUFFORD: Bob, and then Phil, and then Paul.

DR. WINDOM: An organizational group, a group of organizations that really are very strongly for health objectives is the voluntary health agencies in cancer, lung, heart and so forth. They spend an awful lot of money on educational efforts. Maybe if we could help to get them to direct some of their funding, then we can show them areas where we want to focus and need to, particularly in States-- they may wish to put some of their funds into that, because we might come up with a more effective educational output by cooperating. Then also, making them aware of the fact we want to seek goals which they're trying to seek and see if we can't seek them together. I think that might be a resource base to approach.

DR. SONDIK: These efforts in BRFS and our States' effort and the Kennedy-Kassebaum, all of this is leading toward a "standardization" of information that would make it much easier to work with local organizations, because we would have the questions, in a sense, asked in the same way and could support at least in that fashion--if not in a more substantive fashion in terms of dollar resources--we could certainly support the technology and the methodology by which this information would be best collected, and then how to compare that to what we have on the national scene.

DR. BOUFFORD: Phil.

DR. LEE: I just wanted to ask John if there's any possibility that user fees might be considered for some of the data that you're collecting, John, with the medical care expenditure panels? I mean, you are collecting this on insurance and on providers and on consumers. And is any of that, potentially at least, user fee--

DR. EISENBERG: I suppose it could. Ed may be able to respond to this better than I would, but I would think that one of the key issues there would be the sampling frame. I'm pretty sure that the user would feel as if the specific needs that the user had are going to be adequately represented by the sampling frame that MEPS has. Ed, what do you think?

DR. SONDIK: I think it could be. The problem is the sort of limited nature of the sampling frame. We're really not covering the entire country, but it certainly could be--I think it's possible. I guess it would trouble me a bit to have user fees for a survey that's being collected--that there haven't been, if you will, charges for in the past.

DR. LEE: Let's say California wanted to have you do California. Could you do that?

DR. EISENBERG: Certainly for the infrastructure and the--

DR. LEE: You've got the methodology.

DR. EISENBERG: True, the methodology, the infrastructure, the template could be expanded, I presume, less expensively, for less money than it would take to start over, for the State of California to reinvent the whole process. That would make reasonable sense. I can't think of a reason not to do that.

DR. SONDIK: That's our thought in SLAITS, for example, that we would do this in areas in which the cost would be shared with the local area.

DR. BOUFFORD: Paul.

MR. SCHWAB: I was just thinking--the Healthy People process has been in a paradigm of, as you were just saying it--I think, that strong databases was a goal, objectively established, tied to science. I was wondering whether, in fact, that was an issue that was discussed by any of the focus groups? That is, whether in fact this may be an area where priorities are in order, tied to the objectives and indeed, where is it really essential that that standard be maintained, and where might it not be, where, for example, either proxy measures, sentinel indicators, a whole variety of other types of possible, maybe less rigorous, but yet from a user standpoint--since it does seem to me that the Healthy People has as one goal the measure of progress, but also to change behaviors. If the users can agree on a level of comfort of precision with the information that's available to them, maybe that standard doesn't make sense across the board, if in fact that's the goal.

There may be areas throughout this where there could be a less rigorous, if you will, standard, an agreement among the users of the Healthy People process as to what would be acceptable to them to act on as a level of precision, fully understanding that it may not be--because the flip side of this is that many of the data surveys take time. It's not just the cost. There's another element here, and that's that the data may not be available for another three or four years. We're in a very dynamic environment where there are a number of folks that are looking at what they're going to do next Tuesday. It's not necessary to roll over and cater to that, but to leave some kind of a balance.

So I guess my question is the extent to which that's still an open issue, as far as this process, and basically the template that we adopt, or that is adopted as far as data is concerned, and the measurement issue.

DR. SONDIK: It was raised before when Earl said that we had some objectives for which we don't have terribly solid data, in significant part not because the data sources are weak, but because the objectives are worded in such a way that we really can't measure those objectives. There are a number of others, though, that were postulated at the beginning for which we have developed very good data sources.

I have a concern any time we sort of violate the rigor, if you will. This doesn't mean that in a local area, in a county for example, that they're necessarily going to be able to collect this information in an entirely rigorous way. I think that's where the training comes in, being able to couple that information with information that's available, say, on a Statewide basis or a national basis.

The BRFS surveys are quite solid, but if we incorporate or develop this SLAITS technology that I mentioned, that survey, that's quite rigorous on an RDD type basis. I think that would really be very useful for people at the local level. I would not encourage them to go far afield from collecting information on as rigorous a basis as possible. I think that would hurt the effort.

On the other hand, one of the wonderful outcomes that's come from Healthy People has been the development of local objective setting efforts in some cases in States, and in some cases at levels below that, at which the framework has been used as the starting point, but they've developed different objectives and are using their own data sources and the like. So I don't think we can control things. I think what we want to try to do is encourage the use of this framework at least as a starting point and try to encourage as rigorous methods as possible in the collection and the analysis of the data.

DR. BOUFFORD: Craig.

DR. VANDERWAGEN: Two or three observations. One is, and this is in line with what you just said, Paul, the tribes can take the resources that you would otherwise extend for these kinds of activities, and they may or not choose to buy them back from us. They may decide that that's not important to them.

The challenge here really is leadership in getting their buy-in to the importance of that information, not just for their local environment, because their first and most pragmatic consideration is "what is this going to do for me?", but to buy into the issue that I think Jo mentioned, and that is, what do you do to advocate for those populations who may not have a business base that gives them a non-altruistic basis for why they're advocating? It's one thing to advocate for an individual tribe, or an interest, take a tribe to be an interest just like a county or a city or a State, and they will advocate for their interest, but what about the needs of Indian people overall?

So it is very difficult to elicit this kind of altruism where resources are tight and difficult and people feel that they have to take care of their own business first and then maybe, if they have something left over, they will be interested in this altruism. It just leads to what is our Federal role, then, in terms of, do we somehow hold back a piece and say no? We will keep this and we will direct it, and then we're right into the conflict over, well, is this big government or what? So it's a real tension that has a lot of interplay in it. I know that Dave has it in the States, and I'm sure States have it with counties, and it's difficult.

DR. FOX: We presented the Healthy People framework to the Secretary about three or four months ago, and one of the things that she expressed a very strong interest in was the ability to collect data down to at least the State level, if not beyond, to be able to localize it so that it did have some import, it did carry some weight, and perhaps some impact. I don't remember the percent offhand of the objectives that we identified that could be placed on Statewide levels. It was a minority of objectives, a small number--do you remember the number?

MS. MAIESE: There's a third that we get them annually on. Those come from vital records. So that third is, in essence, those that we have at a State level, and presumably at a county or city level, since those vital records are produced at that local level. I would say, about a third of the objectives.

DR. BOUFFORD: I'm glad that one of the issues here--and I think we may be running out of steam in general, but we do have one more item to talk about. Maybe it's too depressing or something, but the two themes I hear--one is the overall, how do we make it clear that this is important in terms of the resource question? But the other strategy that Craig is raising, I think, is this issue of marketing, if you will, social marketing, as somebody mentioned earlier, to the communities themselves, to the local leadership themselves, because part of the commitment around--if we can provide a framework that helps to sort of standardize and give people--do the sort of up front, if you will, labor-intensive technical work, then many times people can be quite creative about how they invest in collecting that information and making it available.

I think it segues kind of nicely into this discussion of the business community and how they might be engaged in developing an interest in this, and making this seem important for their own business reasons, but also perhaps for community service reasons. They are interested in being good community citizens as well in the arrangement, I think, with the understanding that we have Federal responsibilities around these underserved populations. Why don't we try to--I know Julie has to leave. Thank you very much for coming, Dr. Richmond, and being involved.

Do you want to talk about a quick introduction on business and let's try to use the--

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