[This Transcript is Unedited]
National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782
DR. W. SCANLON: Actually, two key people for our first topic are not here yet. Walter is one. He drafted a letter in February which we did not send about sort of the issue of resources. And then Ed Sondik said he would join us to talk about sort of what's happened since February in terms of NVCHS resources and some of the more on the response to the letter that we sent in February. So I think we can go through the housekeeping detail, I guess. We probably should all introduce ourselves to get on the record that we're all there for posterity sort on the web. I'm Bill Scanlon, the Co-Chair of this Population Subcommittee and my other Co-Chair, Don Steinwachs, has wisely taken the time to go to the Galopalos. So he sends his regards. He has no thoughts about it. Let's go around the room.
DR. LAND: I'm Garland Land, Executive Director of National Association for Public Health Statistics and Information Systems.
DR. HORNBROOK: I'm Mark Hornbrook from Kaiser-Permanente. No conflicts.
DR. BREEN: I'm Nancy Breen from the National Cancer Institute, NIH.
DR. HITCHCOCK: I'm Dale Hitchcock. I work with Bill Scanlon at ASP.
DR. MIDDLETON: Blackford Middleton, Partners Healthcare, Brigham & Womens Hospital.
DR. BAREFIELD: Amanda Barefield.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, Committee staff.
DR. W. SCANLON: All right. Who's on the phone?
MS. PAISANO: Edna Paisano from IHS.
Agenda Item: Investment in Health Statistics- Draft Letter Feb. 2009
DR. W. SCANLON: Edna, welcome. And we're anticipating that Dan Friedman and Gib Parrish are going to join us probably around 4:30 to talk about the statistics division for the 21st century, give us an update sort of a preview for tomorrow's discussion.
So given that Walter and Ed are not here yet, let me maybe sort of jump over to the second topic and just give you an introduction to that. As you all remember, we had hearings the day after the Full Committee's meeting in February. At that point in time, there was a thought that both from the November time and modeling date of improved health reform as well as the meeting in February, one of the themes that's important is that we get access from the access to the data that exists. We could talk about the issue of data accuracy, but it seems like it's more of a sort of a no-brainer that if we have data, we should be making the best use possible sort of it. And what we heard particularly in the prior hearing was that for peoples within the government even that access to information was often problematic. And so, therefore, we had sent a letter to the Secretary after a data linkages hearings, which goes back a good year and a half, saying that we really need to think about how do we promote the access to the data. There was discussion. I mean, Don and I have talked to Bob with the idea that there was going to be an introductory letter to the Secretary saying welcome to your job, we're the NCVHS, there are various things that we think are important, one of them is access to data. And we had discussions about that. But with the changes in who was going to be the Secretary as well as the delays in who was going to be the Secretary, that letter went not to our message. So there is this potential that we think about sending a letter or including this message in something at some point again to remind sort of everyone about how important this is.
Agenda Item: Follow-Up – Health Insurance Data Gaps and Modeling
DR. W. SCANLON: The second thing to think about and I think we probably should take this on as an assignment rather than trying to resolve it today. But you know, let's reflect back on what we heard in February, what we heard sort of in November in terms of adequacy of data for both measuring status as well as modeling purposes, and what would be themes that would come out of that to say here's are critical dimensions that you want to think about in the future.
The Stimulus – I mean, I was sincere this morning. I think the Stimulus Act changes our game tremendously in the sense that we've been talking about data adequacy primarily in the context of surveys and, to some extent, to administrative claims. We haven't been really dealing with the idea that there's going to be rich data available somewhere. And the question is can it be tapped into, how can it be officially tapped into, how can it fulfill needs that we have here and maybe even fulfill needs that we never even thought were needs because we never thought we were going to get that close to having information that rich. I mean it's kind of – it's a question of expanding your vision as much as it is sort of thinking about sort of how you should satisfy the needs of your prior sort of vision.
So these are things that as a subcommittee over time and working full committee, I feel it's important that we try to move forward on. As we, you know, this linkage to meaningful use, I think, is not something we do as a subcommittee alone. This is something where the standards and the privacy and the qualities of committees all – I mean in June, we almost had a hearing on meaningful use in the Quality Subcommittee, and there was a plan to do that, and then it got superseded by the two-day meeting of the Executive Subcommittee. But it's basically, it's something that cuts across all sort of four of our subcommittees. We need to think about sort of how do we work together? A number of us are on the Quality Subcommittee. So it's very easy to think about, you know, we have that sort of interaction and we can take advantage of that. But I think we're also going to need to consider how do we coordinate with Privacy and Security and how do we coordinate with the Standards.
And for me honestly, even though I've been on the committee now for a number of years, they still remain black boxes, okay. And so how do we sort of work in tandem? That's something to be determined. So any thoughts about the meeting we had in February, the hearing we had in February and what we should be doing in terms of follow up, I'd be interested in entertaining a discussion about.
DR. MIDDLETON: Bill, just a couple thoughts just to kind of recollect that meeting, and I think I did miss part of the special testimonies in populations. Because I do recall your exhortations, among others, that there was a financial crisis in some of the vital statistics. So number one, I think we have to make sure that that is somehow being, you know, made better, redressed or otherwise highlighted as an unacceptable state. And I think more broadly, the expansion of population health statistics into the ways in which we've all described is extraordinarily tight both from a social network point of view and all the web stuff and then the social determinant stuff. I think it would be interesting to hear more about because if anything's happening with the advertent of HIT, it's that the understanding of how broad is the patient care experience and beyond, you know, beyond just the healthcare setting into one's personal experience and those determinants of health outcomes.
DR. W. SCANLON: Right. I know, and I think in particular the issue of the resources and vital statistics, that's hopefully what we're going to come back to when Ed comes here. And this whole idea, I mean, the excitement of his testimony is just an example. I mean I've been feeling sort of another context that I work in, that we're limp along with the kind of data that we have, and we talk about research and we talk about quality measurement and outcome measurement. And yet, what we have are no where near where we need to be if we really want to have a serious impact on the quality and care delivered, if we really want to think about sort of efficiency and, as some people call it, bending the curve. It's just not going to happen with the kinds of information that we currently have because decisions based on these data are going to end up sort of having the kind of consequences that lead to backlash, and then you throw back the idea afterward.
DR. BREEN: Bill, do we have time to liaison folks to chime in about the health what they're seeing where they sit now about what's going on and what's possible that's moving in this direction, or should we do that later?
DR. W. SCANLON: You mean like Nancy and Dale?
DR. BREEN: Yes.
DR. W. SCANLON: Debbie there? Sure, I mean –
DR. HITCHCOCK: I hope Ed comes. I think that he would say that the 2010 budget, the President's budget, there was a request for $13 million extra for NCHS, and there was appropriations language talking about what the money was going to be used for, and part of it was to go to DVS and to ABL. I don't know that they got into the electronic birth certificate or death certificate. But one of the appropriation language did say that they wanted to maintain the current – not with the current – well, yeah, I guess it was the current, they would have to do the retrenchment that they talked about. So there is money in there for DVS.
DR. W. SCANLON: Right, and I think the important thing to hear from Ed is that when we had these discussions before, we were talking about this hole we were in that's pretty deep, and it's kind of vital statistics and surveys.
DR. HITCHCOCK: Yes.
DR. W. SCANLON: And the National Health Interview Survey had to be cut back significantly.
DR. HITCHCOCK: And when does this language change restore that to a certain level. There's also language about Hanes and keeping that in the field, and I think money would go to renovating the trailers, that sort of thing.
DR. W. SCANLON: Right, right. I mean, and this is kind of a separate thing, but I'm on a panel for the Board of Scientific Counselors. They have different groups together to review some of the NVCHS programs, and we're looking at the long term bureau statistics. And there you've had a survey that's been put on hold until 2010. Now after that, you're going to ask the question, well, how comprehensive are these surveys relative to the field of long term care, and what you get is they're not very comprehensive – that there really are some significant gaps, and in fact it's the most difficult gaps that we're talking about in terms of trying to deal with providers that are not so visible in nursing homes and other kinds of providers are much harder to identify. And then of course the economy, we have to deal with that which is something we're faced with the future. Actually, Larry Green, introduce yourself for the record as well as Virginia.
DR. GREEN: I'm Larry Green, University of Colorado, member of the subcommittee, and I have no conflicts.
MS. GREENBERG: I'm Marjorie Greenberg, National Center for Health Statistics, CDC and executive secretary to the committee.
DR. CAIN: Virginia Cain, NCHS.
MS. LUCAS: Jacqueline Lucas, NCHS.
DR. W. SCANLON: Thank you very much. Now we were hoping for Ed and Walter.
MS. GREENBERG: Walter is probably across the way at Standards. So we've got to slice him in half. But Ed –
DR. CAIN: Ed will be coming down, but he's in the midst of an Atlantic crisis at the moment. He's on his way.
DR. W. SCANLON: Okay, good. All right. Well, the reason we wanted both of them is because we were going to talk about this whole issue of resources, and there's a letter that Walter had drafted. So we would like him to be here as we discuss it.
MS. GREENBERG: Well, maybe when Ed comes in, we could get Walter, too, across the hall.
DR. CAIN: Ed gave me some guidance on that. So if it comes up before he gets here, we can talk about it. But it would be better if he were here, obviously.
DR. W. SCANLON: Well, we will – let's rearrange the agenda to try to accommodate sort of the Atlanta crisis. Any other sort of points about our February hearing and things that you would want to think about communicating –
DR. BREEN: Do you want me to give a little bit of an update from what I know?
DR. W. SCANLON: Sure.
DR. BREEN: From what I know which, you know, I don't sit at a high level. So what I hear is scatter shot. But I work in a surveillance program in the Division of Cancer Control and Population Sciences at NCI. So I try to track that.
And one of the things – and Dale is more involved in this than I am, but healthy People 2020, the framework is being developed. There are two sort of parallel committees. There's an internal committee of federal government employees that are working on the framework and also objectives, and I think there are going to be goals as well. And then there's a committee of academicians, I'd say, or an external committee that's also doing pretty much exactly the same thing, and at some point they will all be coming together. And I'm not sure how that will all be negotiated. But that's coming up.
And then the 2010 objectives and goals will be evaluated using the 2008 data, and that will be published pretty soon. Then a big thing that's happening at AHRQ and NIH is comparative effectiveness analysis. Quite a lot of money went towards that, and I'm not sure how that all came to be. But there were certainly Tom Daschle's book had suggested that comparative effectiveness analysis was very important. And I don't know if this money was allocated when it was still thought that he would be the DHHS Secretary. But in any case, that's moving forward. And so a lot of analysis on that is being done.
There's also a lot of people are talking about the use of IT, and they're talking about how IT is going to save money. And one of the things that we might want to talk about that I think is missing from the conversation is exactly how IT would save money because by spending money, you don't save money. But by using – getting the data and then using the data, not there's a gap between putting IT possibilities in every doctor's office and returning that to the public domain somehow. But that were to happen, then of course is the possibility of observational studies comparative effective analysis, all kinds of systematic studies then in fact could help us figure out what are the procedures that make sense to continue to cover versus not.
And so I think that I haven't seen that discussion or those points made, and it might make sense to include that in some letter that we move forward because I know that we're interested in health IT and medical records –- IT medical records.
MS. GREENBERG: Have you seen the committee's work on meaningful use?
DR. BREEN: Mm-hmm.
MS. GREENBERG: Of electronic health records?
DR. BREEN: Mm-hmm. Does that talk about this? I mean I could see where it would from the title.
MS. GREENBERG: It touches upon population health benefits.
DR. BREEN: Okay, because I haven't seen it in the newspaper, in the mass media. That's what I was talking about, and I think it needs to be part of the public discourse.
DR. GREEN: Another question from –-to follow up on this morning, I'm working at NIH was Mark, I believe, this morning that asked the question on how the CTSA enterprise at NIH and focus on translational research is going, and how that would nex up to information technology and community based connectivity, all that sort of stuff. Is much going on there? Is there a discussion there of any sort?
DR. BREEN: CTSA – what does that stand for?
DR. MIDDLETON: The Clinical Translational Sciences –
DR. BREEN: Oh, okay. I don't know. I should know that, but I don't know much about that because I work in population sciences. And –
DR. GREEN: Well, see, that's just my point. That's the reason I asked the question.
DR. BREEN: So I don't think that other people would know. I don't have a level in me about that.
DR. GREEN: So the March model that's working in my head at this point pertinent to this committee is we're assuming population health. We know for a fact that billions and billions of dollars invested in NIH have not improved population health the way we think they could and should. NIH agrees. They say we need something else. Maybe it's translational research. Maybe if we made some investments in our research infrastructures to do translational research, we could do better. That really means creating new ways of doing research, doing new data exchanges, there are new data requirements there, and there are new data possibilities there for information that don't exist today which should exist, according to the corrections of NIH on research and this CTSA stuff and what we're working on and our concerns about population health. It just seems to me that there should be, as you were just saying, that's a conversation that's trying half of us.
MS. GREENBERG: Where is Art, by the way?
DR. W. SCANLON: He was here.
DR. BREEN: That conversation should take place, and there are also some other population based efforts that are being done where I work like the HMO Research Network. I don't know if you're familiar with those data. But that is a breast cancer surveillance consortium which is a mammography registry which, again, is limited in scope but is population based.
So those are the kinds of data collection that we've been involved with in my division, though some of the other divisions are where those other data efforts that you're talking about are located. And there's not a lot of cross talk. We're starting to work on grids and what they're calling – these are data grids, and they're – the idea is to set up a framework in which you can put data. But at this point, they're talking about metadata. It's all very abstract, Larry. Hate to kind to go there. But it's something that a lot of money's getting poured into. If you look at CAB, that is one of the big efforts at NCI. And right now, there's an enormous amount of meta data which is descriptions of data and where you might go to get data without having the data there necessarily. But just descriptions of, you know, how to so that with the goal is to get consistency and standardized kinds of data. But then, you know, we still need to collect the data, and that provision's not really being made, you know, to do that. And so that kind of brings me to the NEIS redesign which maybe Ed will talk about.
DR. GREEN: Well, Virginia can.
DR. BREEN: Okay. And I don't know if – but I've been a bit involved in those discussions because I was the project officer for the cancer control supplement to the National Health Interview Survey, and I used the data quite a lot in my research. But they had an external panel which was asked to review the NHIS by the Board of Scientific Counselors at NCHS. Were you on that committee as well, Bill?
DR. W. SCANLON: No.
DR. BREEN: And they came up with over 20 recommendations. And we've been talking about, you know, what recommendations they might want to move forward with. It really had left the field right open. But what they did say and I think maybe what we want to say that you had mentioned before was that, you know, the first thing they said was that NHIS is a critical resource, and it has to be preserved. And they weren't asked to talk about resources, and so they didn't say it should be expanded, but that was implied by all of the subsequent recommendations. Because one of their recommendations – and this is one that we've been talking about with them at some of the other population science-based divisions within different institutes at NIH is to, I'm sure, require expanding the NHIS in order to collect data that could provide at least state level estimates rather than just national estimates because we really need state level estimates and possibly SMSA or Standard Metropolitan Area estimates as well.
So that's kind of the direction where maybe that's going. But you know, it's going to take additional resources. We might want to promote that as well.
DR. W. SCANLON: Right. We have the –
MS. GREENBERG: Is Jim on the phone? Excuse me. Did someone call in?
DR. W. SCANLON: Jim I don't think is calling in. Mike was here earlier. And so – no, I mean I think we face the dilemma of sort of our resources here which is the time sort of issue. And we had talked about looking at the translational effort before. But then when we were discussing sort of priorities with Jim Scanlon, this whole issue of health reform and data for health reform kind of took priority, and then given kind of our ability to have hearings, we had the two related to it. So you know, the question that we need to continuously face is how much do we continue to operate at the margin which I think where we've been, and we've in some respects trying to fight a rear guard action against the declining status quo, and how much do we need to continue to do that versus kind of a broader perspective to turn things around. And the – I'll put it on the table. A danger of a broader perspective is that it's so broad that it gets ignored. I mean, so I think we've been thinking about the kinds of things that we could say to the Secretary that would be feasible for the Secretary to accomplish in a reasonable amount of time. And the issue of bigger reaches, we may be at a point given the Stimulus bill, given the interest in health reform that we can think about a broader and more ambitious sort of perspective. But we have to work on defining that.
DR. MIDDLETON: You know, I guess what I would offer is it seems to me that there's a couple of things to dovetail with, and one clearly is the comparative effectiveness work which will require much more attention to populational data sets and the like to produce than the ability for the comparative analysis.
MS. GREENBERG: Oh, it's highly unlikely that any of that money will go into population health.
DR. MIDDLETON: Just kind of show the actions, and then maybe it might will kind of ooze around. Well, the second thing is obviously as the HIT infrastructure is rolled out, thinking about ways to harvest what data are relevant to both comparative effectiveness research and vital health reporting and new sort of ideas about population data sets. And you know, sort of the marketing buzz that one might consider is the CTSA certainly, you know, Harvard, for example, it's all about bench to the bedside. What we don't have is the reverse view which may be equally important. What about from the community to the patient, you know. So we're going this way as far as we can through the CTSA and all of the related efforts. What about starting with the population and the environmental perspective and all the rest of it and then barreling back towards the patient?
DR. GREEN: I think there are good examples of that reversing the direction within the National CTSA community. All CTSAs and CTSA – there are examples of this where Nancy's comment about needing to get at least a statement of their CCTSAs where they're driving full throttle because they're going to target a population that they're trying to move to health status on and make a change, and they're making – they may be replicating something from the National Therapy Survey, but they're driving it down to census like levels and adding 3,000 people to the data set for their community of interest, their part in the community in the CTSA. What Blackford's talking about, I don't personally I think that's pragmatic. I don't think that's kind of silly or ridiculous. That's stuff that's trying to happen, and there are people who are struggling with that right now within NIH programs.
DR. BREEN: Yes, we're trying to support things that are ongoing. And one thing that we're exploring now and NCH's taking the lead, but we've got some other institutes and centers and offices that are interested, the California Health Interview Survey is modeled after the National Health Interview Survey, and that provides information for the state which is comparable to NHIS. But it also provides information at the county level and sometimes the sub-county level for places like LA and San Diego and San Francisco, large cities.
So a number of people have come to the PI of Cheswick Brown and asked him, you know, we'd like to do this in our locality or our state, how can we do this. And so we're now funding a small study to look at innovative local house surveys to see what is going on around the country systematically, how people have developed their own surveys or they've used shaded to develop a survey on that model, or they've used Bovis and expanded that just to see what's going on and to see where the action seems to be, where the innovation.
And then we don't really know what we're going to do with this information. But we'd like to some sort of orchestration. We'd like to see the best ideas, the innovative ideas percolate up. We'd like to best practices, some standardization. But you know, it would be a question of, I think, orchestration rather than trying to actually fund that from the federal level. But we're trying to see what's out there and work with what's out there and promote, as you were saying, Larry, what's going on anyway to try to make it into something that, you know, is more comparable across these entities so that, you know the data collection and the activities that are needed and the localities are occurring. But inasmuch as possible, we can start to roll them up as the 21st century's statistics says into something that is broader and more comparable.
DR. W. SCANLON: Okay. I mean I think these are the kinds of themes that we need to pursue, and we've all been on the committees long enough to understand sort of what the role of the committee is. And the idea or you could all think about developing perhaps sort of a mini-proposal which is like two or three sentences for where you see sort of this committee kind of suggesting this kind of innovation in what context. The committee has the role as a data committee, and so that's always an important thing, and we also – we bring as was talked about this morning, we bring the advantage of being from the outside and bring that perspective to the department. So thinking sort of from these things, you know, where we can go in the future is an ongoing discussion, but we want to get concrete enough that we have accomplishments.
MS. GREENBERG: I just wanted to mention that I guess they'll be calling in at 4:30.
DR. W. SCANLON: Four thirty, right.
MS. GREENBERG: But Gib and Dan are in the process of doing these key informant interviews, and I would be surprised if some of these concepts haven't come up in their interviews.
DR. W. SCANLON: Right.
MS. GREENBERG: And you know, they'll report on phase one in September. But the plan is that this subcommittee if, you know, there are things you want to take forward from that, could hold some hearings after in the coming fiscal year particularly, you know, before the 60th anniversary. So I think, you know, if it can fit in with that, that will be good.
DR. W. SCANLON: There's no question I feel like we're in a kind of a regrouping mode. I agree, I mean we have a lot of ongoing things. But we also going to need to be thinking about our future. And since we don't have that many times that we get together, it's always good to have this on the table. But let me now sort of let's turn back to what was in the first topic. The issue of resources for both vital statistics as well as certain population statistics. And we had done the letter sort of in February in part because we knew that decisions with respect to ARA were going to be made. And we have a second letter that we prepared Walter's draft at that time which is more general and reinforcing sort of this position in terms of that we need to be very concerned about the level of resources going into health statistics.
I feel like in February we were in dire straits. Maybe someone has sort of given us a little bit of oxygen since then. I think there's a question of whether is the air still sort of –
DR. SONIK: Fiat rejected us.
DR. W. SCANLON: So what we wanted to do, Ed, was to hear from you kind of how things have changed, where we potentially kind of where we are and what is sort of important for this committee to think about.
DR. SONKIK: Well, I'll try to be absolutely succinct.
DR. W. SCANLON: Okay.
DR. SONDIK: In February, we had cut HIS in half – actually below half. We were going to fund relatively few number of months of the vital statistics. And we were, you know, we had to cut what we're doing. We had four major activities, okay, and those take the entire budget and we had cut them to fit the budget that we had.
And we did not know what was going to happen in '09. But in '09, in whenever it was in March, we got a budget increase. That budget increase enabled us to do a couple of things – well, three things. One is it enabled us to fund at least 11 months of the vital statistics this year, and we hope we can do more. But we'll have to see exactly where we are.
We brought the HIS back to the equivalent of collecting 76,000 respondents per year rather than 38,000. So we doubled it. It's still not where at the design level, but we brought it back. But that doesn't mean that we're actually collecting that this year. It's just the way in which we're collecting because we couldn't go back and fill in and so forth, although there are things we could do. There are things we could. In any case, we're collecting at that rate.
And we are going to – we had dropped the healthcare surveys down to just two – the ambulatory care surveys to two, the hospital and the doctor's office. Pardon?
DR CAIN: NAMSIS and NHANES.
DR. SONDIK: Yes, NAMSIS and NHANES. Well, how many people know NAMSIS?
DR. W. SCANLON: Everybody here knows.
DR. SONDIK: Tom Friedman knew yesterday, I'll tell ya. So I was pleased at that and NAMSIS in particular. So what we're going to do is to keep the hospital discharge survey going. We have a redesigned survey, but we're not moving forward with that. And with the help of ASPE, we're going to, we think – we're planning – all these monies are always tentative, initiate a residential care group survey.
So this brought us out of really being way down to something where we could add, we could sort of get back to level, okay. It's still the water's kind of coming over the gunnels whatever. But the fact that we were doing better with respect to vital statistics is particularly important and the HIS also extremely important. The NHANES was doing okay. It's a very minor thing, preparing trailers actually. I mean, but it's really quite minor.
Then we got the very good news that the President proposed a budget increase, okay. And that would go a long way towards helping us in '10. In '10, we're going to have a significant increase in our personnel cost because we've been doing some hiring, and that comes back to hit us in '10. We'll continue to do well with the vital statistics at least as far as – one of the things we were going to do in vital statistics is cut back the amount of information we were collecting not on the death side but on the birth side. And we are not going to do that in '09 or rather I should say the reason we were going to do it was to give us, was to free up some money that would be used toward an electronic vital statistics system as well as on quality control related activity. Actually, it was a small amount of money is what we were aiming for, but we still felt – I particularly – I'll put it on me – felt it was very important that we invest in the system in addition to paying for the data. I thought we really had to do that.
So if we do receive the budget increase in '10, it will help us along those lines. We won't cut back on the amount of information that we're collecting on the birth side. And again, we think we can do about – well, we think we can do – there's a big caveat with this which I'll come to in a second. But we think we can do the better part of the year is the 11 months or 12 months. If we don't collect, by the way, the full year, then we sort of pick up within next year's funding and by the month that we didn't do the year before.
Now it doesn't take a large diagram to figure out what happens if you continue to do that. You keep falling farther and farther behind, and eventually the Visa card just gets denied figuratively speaking anyway. We would increase the size of the HIS up to its design level. This is in '10. And –
DR. W. SCANLON: What is that?
DR. SONDIK: Eighty-seven thousand. I'd like to see more. But that's what we do, and that would give us the kind of national coverage of minority populations that has been recent. I don't think it's adequate given the demographics of the U.S., but it's been adequate. So that's that budget increase would give us. What we lack – continue to lack is a really solid sample size on the HIS. So if you ask me what would you like to see, I'd like to see the sample size on the HIS go from the 76,000 to something on the order of 250,000. And if we did that, this would enable us to get state estimates as well as more detailed minority population, particular population groups, get estimates of those.
And this could relate to the BRFSS and the other – I think actually what NCI is doing will be extremely valuable putting this together to give us a picture of these activities in '09 because what we need nationally is we need a solid benchmark nationally so that these other surveys can relate to that. You know, I mean the response rate on the BRFSS is not exactly 98 percent.
DR. BREEN: No, they're all like 30 percent.
DR. SONDIK: That's right. So we've got to have that sort of gold standard. Pardon?
[SIDE BAR COMMENTS]
DR. SONKIK: Now there's another telephone survey, Slates, which we do here which is built on top of the national immunization survey structure, and that gets the entire response rate, okay, and the way it's done all the questions are the same, and they're in the quality – it's done centrally so that the quality control is there, okay. We can control the quality of how these things are being asked in a very rigorous way. But there's going to be a lot of efforts around the country. There's no question about that. And I used to think it was sort of a pipe dream, you know, that we were going to need a solid gold benchmark, if you will, a ruler on these things. But now we're really into that. It's true, for example, with Rick Brown's California Health Interview Survey --
DR. BREEN: Yes, it's 30 percent also. And in the large cities, it's less. It's like 17 percent.
DR. SONIK: Right, right. And we're able to overlap with them so that we with our California HIS samples so that we're actually able to provide quality control for them. So it's not like, you know, we need one central place to collect all of this information. But what we need is coordination, okay, and we need enough resources so that we can valuate all of these different sources.
DR. HITCHCOCK: Methodological stuff, too. I mean, you're talking sort of –
DR. SONDIK: That's just the thing I was going to get to that we have zero in '09 and essentially zero in '10. Not essentially – we have zero in '10. We have no extramural program, okay. We do evaluations -- staff internally here do evaluation of what it is we're doing. But we should have a grant program, an extramural grant program to develop first of all, look at the quality of what it is we're doing, essentially quality control and develop methods. The methods – clearly, methods are going to be changing. Down the line, the idea of doing one survey with one mode, you know, there are going to be a variety of different modes that we're going to be using. And it's still not known how to really put these things together in a rigorous way, and that's what we should be. I mean, it's a federal statistical agency. These methods should be the solid methods. It doesn't mean we collect all the data for everybody. Jennifer?
DR. MADANS: You mentioned a million dollars we got back from NIH to buy back some of the '09 –
DR. BREEN: It's just proposed, isn't it? Did you get it?
DR. MADANS: No, we got it.
DR. BREEN: Oh, you got it?
DR. MADANS: Well, we don't have it in our hand.
DR. BREEN: Okay. Cool.
DR. SONDIK: Let me just say what the caveat is on '10, okay, and this is the caveat I think everybody would agree with in the room. This was proposed. I have no idea what's going to be disposed. I don't know. And you know, I think it's terrific, and I have to thank the NCVHS and our collaborators, you know, NIH and elsewhere, the friends of NCHS organization. It's just incredible the support that we've really been getting, and we wouldn't be in the budget for an increase if it weren't for all that.
But in terms of whether we really have enough funds to adequately carry out the mission, particularly the mission as outlined in the vision for health statistics, I mean we don't. And the crucial areas, I think, are that we need more detail, okay, on the multiple populations in the U.S., okay. I don't want to use the term sub-population. That bothers me. I mean, it's trivial. It just bothers me because it makes it sound like there are populations that are sub others. I mean this is – we're just getting, there are so many particular populations, and they all cry out that they want, they need their local – in effect their local data. And so I think that's the critical need.
I think the extramural activity is absolutely a critical need. And ideally, we should have a program where we do what we're doing to a small degree with NHANES. We have a portion of the staff of NHANES are consulting with people around the country on the application of the NHANES methods to particular areas. Now it happened in New York City. They were seriously considering doing it again. The commissioner got a new job of the CDC. But he said he sees a major reason to do that again to evaluate efforts to control blood pressure and cholesterol. He says that's the only way to get that. The problem is he doesn't think they've done enough intervention to be able to evaluate at this point. He said that in his –
DR. W. SCANLON: Garland?
DR. LAND: It's certainly exciting news that this President starts it for 2010 in terms of the vital statistics area because that means that we can potentially collect the 2003 data on this. I think what we're still missing is the fact that there's about half a dozen states that even though the money may be there to collect the data, the data isn't there yet in terms of the 2003 data items. And so we need to find some way to invest in electronic verse systems which would give us the 2003 data items for a relatively small number of states, and some of them already have reengineered their systems so that the amount of investment would be very small for them. There's only two states right now that I know of that don't have the money to move forward to the 2003 data items on their own in terms of a reengineered system.
So we're really talking about a very small amount of money to have the whole United States covered with the standard certificate data. And that's why –
DR. SONDIK: Well, I didn't mention it. But an electronic system for vital statistics is what I consider the big piece that we do not have at this point. And we're going to get the resources in '10 to do it. And we're not going to Stimulus. It appears Stimulus money, we don't know for sure, but it looks the way the Stimulus is defined that that just falls through the cracks. It's just not in the ONC's province, although I happen to think it is. But the way they're looking at it – and we'll see. We're not reading it done. It's not prevention which is the other big CDC piece, although I don't know where NIH is getting the money but it's probably out of prevention.
And I think very much it is part of comparative effectiveness research. But that also appears to be defined narrowly. But we're still trying on that. But I must be honest. I just don't think it's going to pan out.
DR. BREEN: We're off life support, though.
DR. SONDIK: Yes. Oh, no, that's good. But I'm just saying, you know, you think –
DR. BREEN: We're off life support.
DR. SONDIK: That Stimulus money, you know, you say, well, we'll be able to get something. But it's this – to me, the electronic system is to me, you know, many people say we know birth is one side of the record, death is on the other side.
DR. BREEN: The electronic system, is that shovel read?
MR. LAND: Yes.
DR. BREEN: It is?
DR. LAND: Yes, you can get the money out to the states real quick.
MS. GREENBERG: It was initially in the high tech, but it fell out.
MR. LAND: Talking about cancer, there's a lot of data items in the 2003 standard certificate on both the birth and death side that relate to smoking during pregnancy or in terms of death. I don't know if there's any possibility of working with the Cancer Institute to see about that.
DR. BREEN: ACS are the people to work with, the American Cancer Society. They're very good at getting those things done.
DR. W. SCANLON: Walter?
DR. SUAREZ: Well, I guess the question is whether the health IT priorities for population health, I mean, there's vital statistics, you know, the whole electronic move of vital statistics. But there's a number of other areas related to the use of health IT population health and public health. And I mean, I know that McFee was looking at some priorities to bring forth in their discussions around the use of discretionary funding and, you know, providing some of that priority areas was something that we were looking at. And I don't know if this committee might be one place where some of those discussions can happen where not just the book ends of, you know, standardization and movement towards electronic systems for birth and death, but also a number of things in between bio-surveillance and a few other things might be one of the things that we want to focus as a committee in terms of recommending specific activities, again related to health IT and population health. So I don't if there's –
DR. SONDIK: Well, from my point of view, that makes great sense to me because down the line, I mean, these are going to be some of the sources of information. And if we may be getting that direction directly or it may be that it's going elsewhere, okay, into these other data collection activities, but in any case we need to be aware of that and there needs to be this coordination at the department levels.
DR. SUAREZ: Yes, it's almost like the need to articulate as a committee here their vision for public health and population health and in drawing health in the use of health information technology. I mean, I think we have JPHIT which the Joint Public Health Informatics Task Force that is, you know, a group of about seven of the largest public health associations, local, state associations, and we've always been discussing and talking about formulating sort of the vision for the role of health IT in public health and the role of HIT as well. I mean I think this committee is one group that can bring that vision forth and even, you know, invite actually to a presentation those seven organizations to talk about it. But –
DR. W. SCANLON: I don't know if Dan and Gib are on the phone yet, but I mean this is in some ways –
DR. FRIEDMAN: I am.
MR. PARRISH: I am.
DR. W. SCANLON: There's almost – it's almost like a seque, but we're not quite ready to start sort on the 21st century vision. But an issue in my mind always for this update was the idea of what's changed since we did this the first time, and part of it is IT. And so how do we modify the vision given that major change in the environment. Marjorie?
MS. GREENBERG: Well, I don't disagree with what Walter said. But I think bio-surveillance will percolate to the top. But I think when you get – if you look at, I think, John Halamka sent out all of the functionalities or whatever, the basic set of proposed information needs that for his meaningful use might meet, but he co-chairs the new standards committee. And really, the only public –- it may have said bio-surveillance, I'm not sure. But it said public health case reporting, and of course it didn't say anything about biostatistics. But if you think about case reporting, I mean case reporting is meaningless if you don't have any denominators. And what is the ultimate, as you said, case? The birth and the death, and that's what provides the denominators. And I really don't think too many people outside of this room get it. And I mean, they get bio-surveillance. They get case reporting of let's count the number of swine flu.
DR. SUAREZ: I think perhaps we haven't articulated that vision in the context of the new health IT revolution that we're experiencing.
DR. MIDDLETON: And attached some value to it.
DR. SUAREZ: And attached some value to it.
DR. MIDDLETON: So that it matters to somebody.
DR. GREEN: I think we might be segueing into this next conversation. I've really taken what you said a few moments ago about you're being the nation's statistical agency but not having basically an R&D program for the methods. That's a very serious indictment from my perspective at least from what Walter is saying. So we sit here relatively confident that there are social determinants of health and disease. There are a few medical ones – not all that many actually, but there are some medical ones. We know that there is a burgeoning set of genetic ones. And our current systems do almost nothing from the genetic point of view. So I like that Foege and McGinnis and Mokdad's work that says, you know, the reason you die before you should have or you suffer when you didn't have to about 40 percent of that variance is your behaviors, about 30 percent is your genetics, about 15 percent is your socioeconomic situation, about 10 percent is shortfalls in medical care, about 5 percent environment, and that's the air you breath and that sort of thing. If we proportioned our surveillance around the way we go about doing population statistics would have to go an incredible revolution and redesign. So the way this connects up in my head today is that maybe there's a sweet spot somewhere between the notion of a mean to innovate in statistics methods at this particular juncture with the elaboration of the National Health Information Network that is approaching timeliness. If you're off life support and you're only on surgery now, maybe we should do some discharge planning. And I really would like to see us have an opportunity to consider if it's possible to hook up innovation in health statistics with what's going on with the redesign of the healthcare delivery system and the redesign of the information systems undergirding it. This is not smoke and mirrors. This is happening. It's going to happen. I think we should behave as if it's a sure thing. And what we don't know is really how to take advantage of it. I mean, just the teaching is something that totally eluded me. Where's the intellectual works power.
DR. W. SCANLON: I mean I agree with you completely. I mean I think that there is an opportunity out there, and it could go untapped for all in time unless someone takes advantage of it. So I think it's something that we should be thinking about. Before we switch to the 21st Century, let me both ask a question and propose something in terms of our next steps. The question is sort of where the BSC is in terms of some of these issues you've raised. I think the letter that we drafted in February in some ways and it's been superseded by the events we would have to acknowledge, sort of the change in events. But –
MS. GREENBERG: The second letter?
DR. W. SCANLON: The second letter. But you bring on also kind of a much broader and richer array of things that we need to consider and do, okay. And so moving in that direction, being more specific, sort of having a stronger proposal, not, you know, everything in mesospheric total detail, but I'm thinking sort of a letter in September that we think about over the summer through conference calls and come to some agreement about some important elements that should be emphasized because if I remember right, the budget process for 2011 will be going on sort of around that point in time. Be thinking about getting sort of issues on the table at that point in time would prove to be important because in some ways, as you know, we talked about 2010 being iffy. We write to the Congress. We write to the Secretary. And the budget is now in the hands of the Congress. And so in some ways I think it's most important that we maybe appear more thoughtful and more detailed and sort of proceeds. So -- and I guess, okay, Walter, did you–
DR. SAUREZ: Well, it's just a comment in terms of the process. Would it be useful or valuable to hold some – I mean, we're coming up with some more refined and more specific set of recommendations, right? I mean that would be the intent. Would it be helpful to have some backing of a hearing or some sort of, you know, session with – I'm not talking about a two-day hearing, but a half a day or something like that that would provide us with input and insights on current issues and be able to document those and then bring it back. In fact, I mentioned JPHIT as one of the sources because they are seven organizations ready to jump and provide input.
DR. HORNBROOK: Your point is probably because it would then give us in some ways information that will have direct relevance here. So I think –
MS. GREENBERG: Right. I mean the question is whether you can have a hearing before September and how important it is to do this in September rather than in November. They – well, we'd let them speak for themselves as I said. What they'll be recommending, I think, would lead to one or more hearings which also, you know, you could decide on something else. But I think it would be difficult to organize a hearing before then. You could – I don't know if it makes sense to have a teleconference with, you know, an open teleconference with maybe those public health organizations or, you know, that's certainly something you could consider.
DR. W. SCANLON: I mean I think that we should hear from Dan and Gib, and also I mean for me there are things that have face validity, and we've heard about some of them in the room today. In some respects, we don't need reinforcement to be able to feel confident about what we're saying. And the FACAs are created because you want a political FACA in addition to the process the FACA's engaged which is to bring in some sort of more outside certain information. So I think at one level there are things that we could say.
There's another level where we can reinforce both what we said and maybe expand upon it by having a hearing. But we've also got this ongoing process with the 21st Century Vision, and I think there's so much overlap between them that we probably should think about that. And then I guess it all goes back to my question about the BSC and in terms of where they may be sort of thing because I think we also want to consider how do we complement them. NCVHS can give up the role of being heavily focused of NCHS, and the BSC is now playing that role.
DR. SONDIK: Well, I mean the BSC continues to look at the programs in detail in terms of how they're actually functioning and are the right methods being used and emphasizing some of the areas of development, but particularly on the methods and on the quality side. But we're also sharing with them that we're considering major redesigns – and I say considering, I mean it's really very early, but we're considering redesigns of HIS and NHANES and the upfront idea that technology's changed. There may be new ways of doing this where we can do these things more efficiently, and we've started this as an in-house activity. And I told the BSC at the last meeting that we obviously wouldn't do all of this in-house obviously, but we're just sort of getting our feet wet.
But we're also going to have a third group that is looking at how we could combine not the two surveys but look at it more from the standpoint of the data that's being collected and just forget how NHANES works and how HIS works and say, all right, if we've got to start in novo how would we do it, okay. By the way, I didn't mentioned that today is the 50th anniversary of NHANES this year. So you should reserve September 29th in the afternoon here for an event, and then we're going to have another event after that. But we haven't fixed or set a date yet. It's 50 years. So my point of bringing up 50 years is clearly it looks nothing like our great grandfather's NHANES. There's no question about it. But we really need to think about how we would redesign this.
This all fits rather nicely with contracting issues and all of that. So but that's where sort of the BSC is. The BSC is really not looking at the kinds of things that you were –
DR. W. SCANLON: I thought there was, though, a BSC subgroup that was looking into some kind of mission issues.
DR. BREEN: There's a panel, the external panel recommendations. I had mentioned those before you came in and the report. In fact, I sent a copy to Cynthia and Don thinking that maybe this group would be interested in it. Is that okay?
DR. W. SCANLON: Absolutely.
DR. BREEN: Okay. I mean I thought it was public. That was my understanding. So we thought it would be --
DR. CAIN: HIS report as well and what I think you're talking about is the subgroup that's formed on vision and mission within NCHS and where it should go in the future.
DR. BREEN: Oh, okay, so there's a fourth –
DR. SONDIK: See, I guess I view it as kind of where you start from, okay. They're starting sort of right there by the surveys, okay. I see you starting more from that report, okay, and thinking of it from the standpoint of health reform, the standpoint about IT changing and so forth. And so I think it's more like looking in from outside whereas the others are kind of looking out. It's a different perspective.
DR. W. SCANLON: Mark?
DR. HORNBROOK: Can we start from the model that Larry just gave us a little air summary of and also match it up with marginal productivity. Is there any room in the strategic thinking about NCHS to start thinking about tracking environmental determinants of health, genetic determinants of health, health behaviors so that there is a strong cadre of genetic epidemiologists here in the center who are looking at the relationship between genomics and health and the relationship between environment, genetics and health, et cetera. That's 20 or 30 years down the pike, but –
DR. SONDIK: Not so, I don't know, maybe everyone wants to comment. But not so far down the pike.
DR. MADANS: You know, we do a lot of analysis of our data. But primarily we're not a data analysis shop. We're a data collection shop. So right now we have genetic data. We make genomic data available. So we are looking at geno facts, geno tracks. We collect environmental data. We link our data to environmental data.
DR. HORNBROOK: But is it sequential gene sequence data or just family history?
DR. MADANS: No. This is – we have – NHANES has, we're trying to do the whole geno –
DR. HORNBROOK: Good, good.
DR. MADANS: So we have pieces in all of that. I think the overall question that the BSC group is dealing with and I think we're thinking about is how do we move it all forward in a way that maximizes what we get out of it. Is there a better way of getting some of the biologics. But we're assuming that we're not, you know, going to wake up one day and not do surveys, not do vital records, that there's going to be some consistency in what the center's been doing since 1960, but how you kind of coordinate and rearrange it. So I think all of the things that were mentioned about social determinants – actually the center's surveys were found in our social determinants. I think that gets lost all the time. A huge amount of social determinants –
DR. HORNBROOK: Yes, because we spend most of the time talking about utilization data.
DR. MADANS: You know, and that's a small part of what we do. We do have genetic information. We have the environmental information. We do get records. So we have a foot – lots of feet in all of these areas. The question is how do you move and take advantage of what is happening. So we still go to the hospitals or the doctor's office and we're saying, okay, we're writing down everything that's happening at this visit. Well, hopefully, in some number of years, we will have another data source that we can use to still collect that information, and maybe that data source allows tooling to another data source that we can't do right now that will make the whole greater than the parts. And so that's really, I think, where the BSC is, where our data programs are. We're thinking down five, ten years of what we think the world might look like, can we start moving in that direction so that we're a little bit ahead of the curve. While we're still collecting the old fashioned way because right now there aren't electronic medical records that we could get national representative data on. So I think that's where we are.
DR. HORNBROOK: Well, I was just thinking. You look at the high school publications of their valedictorian and salutatorians, and it's an anti-diverse population. They're not white, heavily Asian. So there's something in that cultural environment, in that environment that creates the ability to succeed in academics that somehow other families are missing. That's part of health, too.
DR. W. SCANLON: Since we've been invoking Dan and Gib, perhaps we should turn it over to you and get an update on where we are with respect to the 21st Century Vision update. It fits so well into the conversation we've been having that it's time to give you some air time.
Agenda Item: Health Statistics for the 21st Century
DR. FRIEDMAN: Thank you. How's the reception down there?
DR. W. SCANLON: Very good.
DR. FRIEDMAN: Okay. Gib, are you with us?
MR. PARRISH: I am right here.
DR. FRIEDMAN: Okay.
MS. GREENBERG: You sound as if you're in the room, both of you.
DR. FRIEDMAN: Well, we are in spirit. We're going to be relatively brief, and we really don't have much more to say than what we provided to the committee in our status report. In April or May –
MS. GREENBERG: Tab six.
DR. FRIEDMAN: In April or May, we worked with Marjorie and Debbie and members of the subcommittee on first of all selecting a cadre of potential key informants, and we solicited suggestions. It was essentially an iterative process. We made suggestions. Marjorie and Debbie made suggestions, and then we whittled it down. I think we ended up with 16 names. We went through a similar process in terms of the topic that we were planning to discuss with the key informants. Basically, we made suggestions, and several of you made suggestions as did Marjorie and Debbie.
Each of the 16 were sent a pretty detailed letter invitation that Marjorie sent out. And then we – we meaning Gib and I – followed up with a follow-up note. And based on that, so far we have received 13 positive responses. The whole process took quite a while. We started the interviews the last week in May. And so far, we've conducted six of them, and we have at least seven more to go. I say at least because there may be one or two other people who we may decide to add.
So far, it is a very diverse group, and that is working very well because at first glance at our notes and we have not yet –- Gib and I have not yet reviewed our notes together. Basically, the way we do it is both of us are on the telephone at the same time, and generally Gib has been the discussion master as it were, and I generally have been taking notes. So then we switch off sometimes. And because the people who we're speaking with really come to us with such different roles, what we're hearing varies a great deal from person to person so far, and there's not a lot of overlap, and we feel very positive about that.
But so far, we've talked to Terry Collin from the Indian Health Service who's always just wonderfully helpful, and actually I first spoke with Terry around four years ago when I did a project for NCHS on national strategies for electronic health records and she is the CIO and she's just terrifically helpful.
And then we spoke to Thomas Riley from CMS, Elliot Fisher from Dartmouth Medical School. I'm just going through my schedule here. Mike from Reliable Fence Company, no that's –- William Corey from CDC, Dr. Hacker who's the state health officer in Kentucky, and this morning or yesterday morning, we spoke with David Blumenthal.
And still to come, we're speaking to Ronnie Zeiger from Google. Tomorrow, none other than – Ed Sondik, we're looking forward to speaking with you on Friday, and we also have interviews set up with Jim Rakowsky, Raynard Kingpin, Carolyn Clancy and Farzog Mostashari.
MS. GREENBERG: I'll say – you know, agree we got immediate response. I mean, the response was excellent. People just were very receptive and responded almost by return email when we first –
DR. FRIEDMAN: Yes. The responses have been terrific. And one thing that we've been doing is we send as Ed can attest, after the interview time is scheduled, we send a detailed – oh, it's probably around a two-page letter explaining the project with the questions we want to go over with the person and the list of the eight priority recommendations as well as the guiding principles. And we encourage folks to read that before the interview.
And then the day before the interview, we send them a confirmation email basically just to remind them to please read that letter because most of the people have read the letter and are very well prepared. There's been one instance in which they didn't, and clearly it's much more productive and much more efficient and we're very careful of their time because we really, you know, these are obviously busy folks and we don't want to take up any time unnecessarily. And the five of the six we've spoken with who have, as it were, done their homework on the conversations have been very efficient.
So we will definitely or I shouldn't forget –- we certainly have every intention of completing the interviews in June. And as I said, we may add one or two. And then our plan is to immediately review where we are, review what folks have said in July, you know, with some help from Marjorie and Debbie and hopefully Ron Weinzimmer, as well as from our literature review. We're going to sort of codify our thoughts on changes since 2002. And then in August/September, we'll work on our brief working paper report.
And what we sent to you in the status report, that last page has an outline of our current thoughts on the brief working paper report. And basically what we plan to do is have for each of the eight priority recommendations is highlight major changes related to the particular recommendation since 2002 and then consider options for the recommendations. Is the recommendation still appropriate? Should it be adopted? If so, how should it be adopted, and are there any new or later recommendations that should be added.
But I mean certainly what we're going to be doing is not making recommendations but putting on the table for your consideration options for adopting and changing the recommendations.
DR. W. SCANLON: Okay. Questions?
MS. JACKSON: Hi, Dan and Gib. We're been calling you D and G in the office or the boys. It's a very fluid process, and I just wanted to make sure everybody knew from the beginning from the design they realized from the input from the committee at that last meeting and people provided great input, and we even went back and made sure to beat the bushes to get your feedback. And with that, it is not just a review of where we were in 2002, but Dan and Gib have made it very clear it's all this rich input from people all over the country in various phases and ways of life. And look at IT, as Larry was saying, there's so much new out there. The landscape is changing so much, and it's just this bridge that we're trying to accomplish as a frame of reference for now to get into that whole future.
And so I'm just very excited about the fluidity and the expansiveness and the potential for the document. At the time, we're just laying the groundwork for this in September, and we're unscheduled so far. We have something for the full committee. And eventually we'll find out how we can pull the subgroup together and get for scheduling and conference calls and all. But we've been working generally with Bill and Don for kind of check-in sessions. But we'll get in conference calls for the subcommittee in August in preparation for September.
DR. W. SCANLON: Okay. That's good because actually what I was going to ask was that they don't have to be polished, but if we could be thinking about sort of what preliminary conclusions that are as you're coming closer to September and the subcommittee would have a chance to think about those because I think they're going to play a role in affecting what we decide to do in September as well as a subcommittee. So I think that's great.
And as suggested, maybe among the list of people that you talk to, Atolowande(?) would be an incredibly good sort of choice if you could get him to take some time and do this kind of thing.
MS. GREENBERG: Tell him how much you loved his New York article.
DR. W. SCANLON: So, okay. Anything more, Dan or Gib?
DR. FRIEDMAN: No, not really. I mean we have as Debbie was saying, we have appreciated the iterative aspects to date working with you, and we'd certainly like to continue that. And we will do our very best to provide the subcommittee with some sort of a draft, you know, certainly enough time prior to the full committee meeting in September so that suggestions can be incorporated.
DR. W. SCANLON: Great. Okay, thank you much.
DR. FRIEDMAN: You're welcome.
DR. W. SCANLON: Before we turn to social determinants, I'd just sort of lay out sort of if anybody has any objections to my proposal which is that we think about the themes that we would like to emphasize. We communicate that, say, within the next month through email among ourselves so we can start to use this process. We'll schedule a conference call maybe sort of mid to late July to try and develop this some more. The idea is to both where do we need to go in terms of –- I feel like Ed gave us a shopping list here in terms of things that I feel have face validity to me. But you don't run a statistics enterprise without doing some of these things, and we have been doing that.
And then sort of the issue of a future world which is going to be transformed in very fundamental ways, and that there's going to be interplay between that and this 21st Century Vision. So we may want to hold some of that. I think that for –- we want to have on the table for September the idea that is there something about what commitments are going to be made over the next year in terms of resources that we feel is important to say because that process is under way, and September is –- we're getting –
DR. SONDIK: It's amazing how soon it is.
DR. W. SCANLON: So if that's acceptable, then I think we should all hopefully take that on as something we're going to do. The other thing is that in terms of the two hearings we had on data for reform, if there are themes to come out of that that you want to suggest we work on, suggest those as well, and we'll have those as part of our conference call.
MS. GREENBERG: I just going to say we will send to everyone on the committee and on the staff of the committee, subcommittee members and staff the two letters that went out, the one inviting people to participate in these key informant hearings and then the interviews or discussions, as we call them, and then the follow up that people got because we worked closely with, well, particularly Don at the end because you were on leave. But in any event, we worked with the chairs.
But I think in thinking about this, it would be helpful if you all have that and know what the content is that they're discussing and even refresh your memory on what the eight priority recommendations are that they're focusing on and all of that. So we'll do that after this meeting.
DR. SUAREZ: Two quick questions. The timeline for this whole project, is it September when the subcommittee would deliver a report, or is there something beyond that? Because it looks like some of the recommendations relate to future work done in public care.
MS. GREENBERG: Right. We did this – when we first thought about doing this, we basically just talked with Dan and Gib and said, you know, we're thinking about revisiting this and we are looking towards actually the 60th anniversary celebration. But you know, well, we said it's going to fit in with that more or less. But – and they gave us a full proposal of what they thought would be needed or what they felt would be the most robust way to approach this without breaking the bank.
But even then in light of the budget, it was more than we could chew – take on. So we cut it into – we put it into two phases. We said okay, the first phase, let's have, you know, some of this conceptual background work honing in on priorities, literature review as to what's the status of these recommendations, you know, and key informant interviews, and that phase would go until September.
So they will deliver their report which I think I would see it as a consultant report. I think we should stick to that September deadline even if it's kind of more of a pretty final draft. So it's not so much a report from this subcommittee or even from the National Committee. It's a report to this subcommittee and to the National Committee, and I don't think we would – well, you can see what it's like. But probably we wouldn't, you know, just pass it on or whatever to the Secretary.
And then – and the basis of that, you know, gardening work as it were, they would make next steps as to what to plant as essentially either future workshops or future hearings to explore some of these things more. So we thought if we broke it into two fiscal years, frankly we could afford it, and then also it would work better that way, too, because we didn't know what phase two should be until we've gone through phase one. So that's the situation we're in.
Now at phase two, if there is a phase two – and it sounds like, you know, it seems like there probably would be, may not be completed by a year from now which is the June hearings – I mean the June celebrations, the 60th, but we would have something to certainly from phase one and hopefully from phase two to bring forward there. But I think that will really be up to the committee, and of course, the resources. But that's why we did it that way.
DR. W. SCANLON: Right, and I mean I agree with you completely on all this seeing as we're going to get a report from Dan and Gib, and it's going to be the starting point for what our work on some of this stuff really entails which is first deliberate on what they've said and then think about how we need to build upon that.
MS. GREENBERG: And we can probably – and I think we can continue to engage them --
DR. W. SCANLON: Right.
MS. GREENBERG: Into phase two.
DR. W. SCANLON: Right.
MS. GREENBERG: But the subcommittee would be much longer.
DR. W. SCANLON: And there may not just be one thing that comes out of it.
MS. GREENBERG: No.
DR. W. SCANLON: Because I think, again, going back to meaningful use, I think of meaningful use as this evolutionary process, and we need to think about when we identify the timely moments to weigh in. And so, you know, there may be something sooner rather than later in that regard, and doing some things will be important.
DR. GREEN: I guess I have a question for Marjorie mostly, I think. I'm wondering if we also don't have an opportunity that could be seized right after our September meeting when we have these opportunities for these interviews with the former chairs. If we had this consulting document in hand and we had a chance to mull it over and discuss it –
MS. GREENBERG: It would be the next day, of course, that we're meeting with the former chairs.
DR. GREEN: If there might not be an opportunity to insert writing of that, getting some reactions to some pretty savvy people who, you know, live this and have –
MS. GREENBERG: Yeah, well, that's why I discouraged them for the most part from interviewing the former chairs because I said we're going to be interviewing the former chairs, Susan Kanaan, actually. But I think this would be good fodder for that absolutely.
DR. GREEN: I guess my question is, are there other demands on that time and those interviews that this would interfere with or bring up or can this be inserted in to have yet another subrecord.
MS. GREENBERG: You know, actually with a very general conversation so far about how those are going to be done, and part of them is sort of an oral history that they're going to be taped. And so we're going to have individual interviews. Actually, every former chair that we know of is coming so far, we think, to Charlottesville. But they –
DR. GREEN: Are there any former chairs you don't know of?
MS. GREENBERG: Well, I know of at least one who I think is alive, but we haven't had any contact with him. So then there are a bunch of them who I don't think are with us any more. But so anyway, and but we always said we don't want this to just be history. We want it really to be forward thinking, and this is a lot of forward thinking people. I mean, Don Debner, Judy Miller Jones, you know, John Lumpkin, what have you, Carl White obviously, and that's why we're doing it down in Charlottesville.
So we're having a call next week with Susan about, you know, because that's why when you said September isn't that far, I'm going yeah, you know. That seemed like such a long time ago when we first invited them, and it's really around the corner now. And we could have a preliminary call with her, and then we could have a call with the Populations Subcommittee if you'd like, I mean, because it's really kind of an open book. I know she has some ideas about – well, there are going to be two parts, the individual interviews, and we're going to have a discussion among them that we'll also orchestrated and taped and videotaped, I think. And I think you're going to be there, too, aren't you? And particularly, that discussion among them could deal with some of these issues.
So we would welcome your input on that.
DR. W. SCANLON: I think after you talk to Susan, if she has something on paper, you could show that and then we would have a more –
MS. GREENBERG: Right, to get started rather than – that's why I didn't say not the first call.
DR. W. SCANLON: That would be, right.
DR. SUAREZ: What I was trying to, I guess, get myself into – I was trying to put around what is the outcome of this project. In other words, my hope was that we were going to come up with – and I don't know what to call it. I was starting to call it the 20/20 vision meaning the year 2020, not the 20/20 vision for health statistics. I mean, some sort of a updated but formal and big kind of a here is a vision of the next ten years or whatever since we're going to get into 2010, I guess, but that takes into account all that is happening with health IT. I mean, this is the moment. This is the – if we can do that and go and just make it kind of a document that this consultant and then have a few hearings and then some letter, I think we're missing the opportunity. We have the –
MS. GREENBERG: I think that's actually – it was our ultimate intent.
DR. SUAREZ: Okay. I didn't get it that way.
MS. GREENBERG: But I think before you would want to come up with that document, you probably would want to have some hearings – a hearing.
DR. SUAREZ: Oh, yes, absolutely. I mean more than one.
MS. GREENBERG: Yeah, and that's what I said. That document may not have done a year from now. But on the other hand, to be useful we don't want to have it done too late.
DR. W. SCANLON: No, but I think – I mean, I relate to what Walter's saying, too, which is that I don't know right now it's too abstract for me. I mean and frankly I think what we need is to have made some more progress where we can identify what's potentially an actionable item that we can recommend because you know, we can talk about principles and talk about visions. But ultimately it comes down to sort of what can be done to make this happen, and I think that's where we've got to go. And so when we get more concrete, I'm thinking that sort of those rough drafts we see before the September meeting hopefully are going to guide us or trigger the thinking on our part that leads us to the next steps.
MS. GREENBERG: I mean at one point, we thought of like revisiting every single recommendation and seeing, you know, whether they were still relevant, whatever. That was, I think, didn't seem the best way to go. So but at least this committee and actually all the key informants, too, I had recommended they get those goals and ten principles and whatever and just validate them. I think the committee said, you know, there's nothing bad here. You know, they agreed with them and see what other people did as well. And so, you know, whether it's a new vision, an expanded vision, an implementation, who knows. I think there are a lot of possibilities.
DR. W. SCANLON: Mark and then Bill.
DR. HORNBROOK: It seems to me that there's potentially a long term or quasi long term perspective here, and that is that this NCHS should be setting up the country for evaluating comparative effectiveness dissemination and translation as well as health reform so that we can see how our country is better off or not.
DR. GREEN: NCVHS, did you mean?
DR. HORNBROOK: No, NCHS.
DR. LAND: That raises another question. I understand the healthcare reform bill that's been filed has a statistical entity in there for health reform. Is that National Center, or is this a whole completely different entity?
DR. SONDIK: I don't think it's specified. I don't think is the National Center, or I don't think it's specified.
DR. HORNBROOK: The Kennedy bill, you're talking about?
DR. BREEN: Yes, the 531-page bill, or 639 pages.
DR. HORNBROOK: I'm sure there are a lot of data requirements in there.
DR. LAND: It specifies there will be a statistical – that's not the exact words, but there will be a statistical unit that will be responsible for whatever in relation to the healthcare bill.
DR. HORNBROOK: So what you want to show is to go from the productivity of the U.S. economy, the productivity of our health investments so that our relative health statistics rise faster relative to other countries, and our relative expenditures don't rise faster than the other countries. So we get a better national perspective – international perspective. Then I think there is a – and she's probably going to shoot me down for this. But there is a temporal phenomenon here which somebody, and it may be ASPE, could focus on and that is that the effective loss of health insurance lags economic recession because people maintain their habits for a while until they can't possibly afford them. Plus, they draw on their stock of health, and they draw it down and then they really get sick, and then the bottom falls out. So one would say as the proportion of uninsured and under insured goes down in the next 12, 24, 48 months, however long it takes us to get national health reform being effective, there is a chance now to show that the implicit cost of bad coverage, the diversity, disparities, the lower health status, the bankruptcies, the disruptions of families, the marriage break ups, the divorces, you know, all the things that aren't just a mortality disease but is a social disease.
DR. HITCHCOCK: We really need very current data to do that, very current. I mean it will be easy to look back at it in ten years.
DR. HORNBROOK: I know, ten years from now.
DR. HITCHCOCK: Yes, but –
DR. HORNBROOK: It's a methodological challenge, I agree. But it is something to put into your planning hat and think about.
DR. SONDIK: Well, actually this sort of all relates to what I was thinking about in meeting with the former chairs. I was thinking of Lisa Iezzoni saying the stars are aligning. So I mean that could be sort of a theme, you know. The themes are HIT, health reform, Healthy People 2020, which actually has a very nice framework and could be expanded a bit to be more healthcare as well as the Healthy People side science. I mean this is going – if it continues, this could be a hallmark of this Administration is really this emphasis on science and social determinants. So I just thought about five things that probably more, but it's really quite a –
MS. GREENBERG: What was your fifth?
DR. SONDIK: HIT, health reform Healthy People 2020, science and social determinants.
DR. HITCHCOCK: Diversity.
DR. SONDIK: Well, I didn't put in diversity. But you know, there's any number of things. But it's as if there's been a lot of emphasis on all these things. And I mean I could see asking, you know, them, but I think it's also a charge to the committee as well. We're now in a position to sort of chart a new path.
DR. MIDDLETON: The other thought is a lot of population folks are thinking obviously about prediction and discovery.
DR. GREEN: Lisa's talk was very impressive, I think, and I thought it was just a huge indictment. Here you have measures that are – so if the measures didn't exist, if there were no classification function, if the World Health Organization had never addressed this, if there was nothing sanctioned, if we hadn't known it for a dozen years and nothing had happened with it, it's one thing.
But when you know all of this, then I just kept sitting there saying why hasn't this happened. Why hasn't this happened? And you know, the easy answer is, well, no one pays for it. I think that's a little too fast. There's other things probably at play here about why things like this don't happen. I wish we understood them better.
DR. W. SCANLON: Well, it's part – I mean, per se we'd pay for this whole thing with new profits. So we don't give social determinants the shorter shift, let's turn to Dale.
Agenda Item: Social Determinants of Health
DR. HITCHCOCK: I've heard the phrase a lot today. We were talking about it a lot. Before I start in to social determinants, I'm going to be very quick about all of this. But there's three sort of announcements that I wanted to make. One was remember we had our hearing on modeling. We had the modelers come in and talk about the various use of their models. And we said we were going to have a contractor develop reports on that section, and we actually did. We've got a first paper which basically just looks almost like a catalogue. There's very brief description of each of the models that we've heard about and a couple that we didn't. That one I can make available to you, and I will send it to you, Marjorie, and you can distribute it to the committee.
MS. GREENBERG: Okay.
DR. HITCHCOCK: The second one, which was to look in more depth at these various models and to sort of examine their purposes, strengths and weaknesses, what data they ran on, how often the data were updated and that sort of thing, we're still working with a contractor on that. We don't have that ready yet. So that's one item.
The second item is some of you may have read about this or have been involved in it. The chief information officer at the White House wanted to develop a website called data.gov. Now data.gov is up and running. HHS was originally asked to contribute raw data sets essentially so a user could download onto their own drive or something to take away with them. We really don't have much like that, but we do have a number of excellent data mining tools that are associated with our various collection systems. And we ended up with IGAD from NCHS is on there. We started to just get online there, and we produced tables, I guess, from rates from the vital statistics data that NCHS has made available, public use online. SEER – we've got SEER up and running on data.gov and I think at least two others we've got from CDC. One is the CDC Wonder System that's been around for a long time. Hopefully, we'll get some more recognition for being part of this effort.
Then we also have Whisker. I'm not sure what Whisker actually stands for, but it's an injury sort of surveillance system that CDC also maintains, and that's part of data.gov. I understand that the various agencies are getting a lot of calls about the websites that they put up contacts or have listed.
The third thing, very briefly. We just started a discussion today with Jane Sisk here at NCHS and the Division of Healthcare. ASPE wants to work with Jane in hosting a workshop at some point this summer where we're going to be looking at administrative data needs for healthcare reform, and these are needs – what do you need to know to implement a health – yes, what about the people in Massachusetts? What did they find out? What did they find out they need they have should have gone before, what do they need, what will they need to be collecting now, or how are they monitoring the healthcare reform effort in Massachusetts. So people involved in those sorts of efforts will be part of this workshop. And as I said, it's just – we haven't even had our first meeting on it yet. It's just very much it's just an idea that we're trying to incubate.
So if I could move on to some of the determinants of health, you've got this draft. I didn't realize this was going to be circulated. It has my name on it, and it has the date of 5/21/2009, my dad's birthday. But this was – and Nancy will agree to this. I've been involved a little bit with Healthy People 2020, and I'm on a data group and this data group is involved with both feds and non-feds. Lisa Iezzoni is part of it. Rob Mandershy, as many of you probably know, is working as a contractor, heads this group. Richard Klein here at NCHS, Amy Bernstein at NCHS. We're looking at sources of data for Healthy People 2020 with the idea of making recommendations to the Secretary on what might be done to improve data for Healthy People 2020.
And when we got out of a conversation about social determinants, I was asked to sort of write something up or discuss it, and I did that. And sort of a summary of what I was talking about is on this sheet. And the committee liked it so well, they said let's make this part of our recommendations. That's why it says here at the bottom of the sheet that the HHS Secretary should charge NCVHS with holding a series of meetings to learn more about sources of data and linking possibilities, analytical methods that you could use on bringing in data probably from other sources. The Department of Transportation, the American Community Survey, the Census, new sources of data that we could use to sort of better understand some of the determinants health and the impact that they have
There's been a lot of discussion lately about if you really want to reduce disparities in health, the medical model, better do it alone essentially. You're going to have to look at the context from where the people come. And I was reading some literature on that. I came across this one short article from Journal of Health Affairs, I believe it is, by Gill Lisky and David Satcher – David Satcher is someone I really admire. I think he's a pretty good for – yeah, it is interesting in every sense of the word here. And this article focuses on children, but I think it sort of touches on the importance of social determinants.
And then I was going through it, and I didn't mean to – I marked up a couple sentences here, and let me just read these. These are – without putting in really any context. So this is on the second page, and it says, “The poorest males in Glasgow, Scotland have a life expectancy of 54 years where high income males in that same city can expect to live to 82 years. And the killer is this occurs in a country where nearly all have equal access to the national health service.
DR. HORNBROOK: They don't.
DR. HITCHCOCK: Well, in theory.
DR. HORNBROOK: In theory, but you talk to the GPs, you know there's a lot of –
[GENERAL DISCUSSION]
Dr. Hitchcock: Yes, that's exactly it.
MS. GREENBERG: That's at the heart of the 21st Century Vision statistics. That's that influences on Hamilton.
DR. HORNBROOK: England is more socially stratified than even we are.
DR. HITCHCOCK: So there are a lot of possibilities here, and I wanted to just bring it and put it on the table and see if the committee wants to pursue this. I mean, Rashida, Dorsey and I and Lisa Baffoon who is an intern who was with us for a while here and gone now could work on putting something together over the summer so that an initial agenda item may be even for September break out session that would look at the outline of plan.
MS. GREENBERG: Is Lisa here?
DR. BAREFIELD: No, I'm Amanda.
MS. GREENBERG: Oh, you're Amanda. Excuse me.
DR. HITCHCOCK: We put a plan to put the other four – we're having meetings that we could have on this. It would be much like the format that we used in our sessions on modeling and then health reform data needs where we would bring in both people who produce the data and then probably researchers that need the data. But we would be bringing in folks from the outside. We would talk to people who were working in these areas now as the social determinants, find out what their data sources and try to see if there are gaps and see if there are ways that we could fill in the gaps.
Again, using GU or current analytical techniques and looking techniques. There's a lot that can be done. The HIS and the NHANES survey both geo code all of their interview sites. And within a controlled environment, once you have a GIS code, you can do a heck of a lot of matching. There's some of the work goes on in NCHS now. We've got Jennifer Parker who works with Bill Heimer who's doing a lot with climates and health. But there's a lot that we – whether we rely on this at all.
DR. W. SCANLON: I think conceptually this is an incredibly important topic. I mean ultimately when we collect the data, we want to be able to look at these kind of things. I've been a long advocate of how can we link in some of the environmental data into some of the surveys. But we all agree that we're up against the issue of identification, but put that aside for the moment.
I think the issue for the subcommittee at the moment is so many competing demands and the fact that we spent sort of an hour and a half before we got to this topic.
MS. GREENBERG: You were circling around it.
DR. W. SCANLON: We were circling around it, and it's certainly a part. And my question is whether the part you're talking about that's modeled after the health reforms pair of hearings, whether that's an initial piece or something that you want to do kind of after some other preliminary work.
And so I think – think about it, but I would say don't make a huge investment at this point because I think with what Dan and Gib are going to be providing us, what we're going to be trying to do sort of internally as a subcommittee with respect to think about some of the new opportunities that IT present that we've got a lot that we're going to be choosing from, and we've got to think about how do we sequence those given the resources we've got. If this was sort type of full time job, we would be in great shape.
DR. HITCHCOCK: This is exactly what I wanted to hear. I mean, we need your input on this, and I want to hear what Don thinks of it, too, at some point. I would like to see methods like geospatial coding considered a part of the overall HIT.
DR. W. SCANLON: Of course.
DR. HITCHCOCK: But it seems to me that you're talking about the health of kids which make it a high priority, you need to understand how the parents' health benefits work. Can they stay home and take care of the kids when their kids are sick, or do they have to farm the kids out and send them to school sick or send them to somebody else's house sick. And then the other thing is there's some paradoxes. I mean, my wife and I were sitting in a small café on the Oregon coast, and my wife just happened to strike up a conversation with a lady sitting next to us. It turns out she was a middle school teacher, and they have a school district that was one of the smallest school districts in Oregon. My wife is a school teacher in Beaverton School District which is the second largest school district in Oregon. My wife has class sizes of 25-30. Her class size in Molalla is 18. She was extremely happy and satisfied because she made a difference for every single one of her kids. Do they have any money? No. But she has the human contact with each of her kids to save them from the lack of resources because she's being the most valuable resource. And so there's a paradox in there that we miss in our traditional education measurements in people's spending.
DR. LAND: It's a lot more than just medicine.
DR. W. SCANLON: We're past our time. Does anybody want to have the last word?
MS. GREENBERG: Does anyone else want the ride to the restroom?
DR. W. SCANLON: Good last word. Thank you all very much.
[Whereupon, at 5:32 p.m., the meeting adjourned.]