[This Transcript is Unedited]



Subcommittee on Populations

September 16, 2008

Hubert Humphrey Building
200 Independence Avenue SW, Room 505A
Washington, DC

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 352-0091

Table of Contents

  • Call to Order, Welcome and Introductions
  • ADJOURN Subcommittee

P R O C E E D I N G S (3:30 p.m.)

DR. STEINWACHS: This is the meeting of the Populations Subcommittee. For the first hour it’s a joint meeting of the Populations Subcommittee and the Quality Subcommittee.

The agenda is largely an agenda about discussing what do we want to do in the Populations Committee, and possibly jointly with the Quality Committee around the patient centered medical home during this next year to two years.

There are two sets of pressures upon us. One is that Bill and I from the Populations Subcommittee and Justine and Paul need to show up tomorrow afternoon at the Executive Subcommittee breakout, and talk about what we’re going to do. So it’s important that we try and reach some closure about what are the priorities.

The other was Marjorie reminded us that the budget, she took Bill and me aside and reminded us that the budget is tight. That may mean if you talk about hearings over the next twelve months, at least for the Populations Subcommittee, we might be able to squeeze out at most two hearings if they had joined one of the NCVHS meetings. If they were free standing it may be only one. So part of what may help us whittle down the priority list is that.

Now that we have everyone here around the table that’s part of the Committee, why don’t we just go around and do introductions, since we have both new members as well as staff who may not know each other.

So I’m Don Steinwachs, I’m the Co-Chair of the Populations Subcommittee, and still have the same affiliation of Johns Hopkins.

DR. TANG: I’m Paul Tang, Palo Alto Medical Foundation on Quality.


MR. REYNOLDS: Harry Reynolds, Blue Cross Blue Shield North Carolina, referee for the first hour.

DR. STEINWACHS: I think the referee needs to get in the middle here.

DR. GREEN: Larry Green, member of the Populations and Quality Subcommittees.

MR. LAND: Garland Land, National Association for Public Information Systems, Subcommittee.

DR. HORNBROOK: Mark Hornbrook, Kaiser Permanente Northwest, Populations Subcommittee.

MS. JAMISON: Missy Jamison, National Center for Health Statistics, Populations Subcommittee.

MS. CASH: Amanda Cash, HRSA Office of Planning and Evaluation Research and Data Policy Group.

MS. GRANTHON: Miryam Granthon, the Office of Minority Health Division, Data and Policy, Populations Subcommittee.

MR. QUINN: Matt Quinn, I’m on the Health IT team at ARC.

DR. MIDDLETON: Blackford Middleton, Partners Healthcare, Quality Subcommittee primarily, and I think secondary appointment to the Populations Subcommittee.

DR. STEINWACHS: We take you as a primary.

MR. HITCHCOCK: I’m Dale Hitchcock, I work for Jim Scanlon. I’m the Director of the HHS Division of Data Policy.

MS. MCCALL: Carol McCall with Humana, I’m a member of the Quality Subcommittee.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics, Committee staff.

MS. CAIN: Virginia Cain, NCHS, I’m Chair of our Board of the Scientific Counselors.

DR. WILLIAM SCANLON: Bill Scanlon, Health Policy R and D, member of the Quality Subcommittee and the Populations Subcommittee, and Co-Chair of the Populations Subcommittee.

DR. CARR: Justine Carr, Caritas Christi Healthcare System, Co-Chair of Quality Subcommittee.

MS. GREENBERG: Marjorie Greenberg, Executive Secretary to the Committee NCHS.

DR. STEINWACHS: Why don’t you take one person.

We had agreed, the four co-chairs, that we would spend originally it was going to be the first hour, I think we need to make it less than probably the first hour, but we need to get to a point where we come to a sense of what are the priorities to pursue around and following the hearings on the patient centered medical home. In your book for the meeting here you have the summary of the patient centered medical home hearings.

Some of these questions about what to pursue is also who is going to pursue it. So the reason for the joint meeting here was that the hearings were jointly sponsored to begin with between quality and population health, and so the next steps could be jointly again or it could be there are some issues that are naturally ones that fall in the quality domain and some in the population domain.

I just circulated around, Larry got a last minute email from me saying Larry I need a one pager, and he didn’t get the email before that told him what the one pager was for. But it didn’t hurt, he did it to identify some of the issues that we might pursue based as he saw it out of the hearings.

I don’t know, Justine, did you do something also, you and Paul?

DR. CARR: Yes, we did.

DR. STEINWACHS: Did you have it to circulate to everyone?

DR. CARR: I did.

DR. STEINWACHS: Oh, so people already have it?

DR. CARR: Oh, I apologize, I did not have something to circulate today. I sent it out Sunday as part of the minutes, but I can speak to it.

MS. GREENBERG: We have folks on the phone.

DR. STEINWACHS: So folks on the phone, could they introduce themselves?

MS. KANAAN: This is Susan Kanaan, hi, everybody.

DR. STEINWACHS: Hi, Susan. Are you in California?

MS. KANAAN: I’m in California.

DR. STEINWACHS: I hope you’re enjoying the sun.

MS. KANAAN: It’s actually overcast. We’re hoping for rain, unlike some of you.

DR. STEINWACHS: Thank you.

Is there anyone else on the phone?

DR. LEPKOWSKI: Jim Lepkowski, the University of Michigan, with the NTHS Board of Scientific Counselors as a liaison.

DR. STEINWACHS: Jim, I can barely hear you.

DR. LEPKOWSKI: Sorry, I don’t know what I can do to – is that any better?

DR. STEINWACHS: That’s better, and thank you for being with us. Anyone else on the phone?

MS. PAISANO: Edna Paisano.

DR. STEINWACHS: Edna, thank you for joining us, I very much appreciate it. Anyone else? Okay. Those on the phone, when you have comments and so on please let us know, and don’t let us drown you out here with the conversation.

I thought that maybe we might start. I also wanted to recognize again that Matt provided the staff support for the hearings that made it possible. Miryam was very helpful and supportive in that.

So Matt has been drawn away some by I think he has a full-time job in addition to working for us, but it’s great to have you here as part of this conversation.

I was going to turn to the co-chairs if they had any other introductory remarks. And after that, I was going to suggest that maybe Larry and Justine sort of lead off with what each of you have put together, some thoughts about what might be directions for next steps for medical home.

MR. HITCHCOCK: Don, can I make one more quick introduction?

DR. STEINWACHS: Oh, please.

MR. HITCHCOCK: Of someone who has just joined our staff and we want to have work with this committee, and that’s Rashena Dorsey back here, who comes to us from NCHS and EIS. She is a Ph.D. chronic disease epidemiologist, and just joined us within the last couple of months, and would be interested in helping with the Committee.

DR. STEINWACHS: Oh, wonderful. Well, thank you.

Doug, do you want to come up here too? Well, we also have – Doug, now take a vote, ASPE now dominates the Committee? At least we’ll come up with a right answer that way.


DR. STEINWACHS: Bill, Justine, Paul, do you want to say anything introductory?

DR. WILLIAM SCANLON: Just the idea that you’ve laid out some of the resource limitations that we’ve had. And I think that if you look we’ve got I think like five topics before we get to a general discussion, all of which the agenda is misleading in that each topic involves multiple subtopics.

We have an incredible array that we could choose from, and I think it’s important to think about what we would expect to be most generalized and have the biggest impact given that we have such limited resources. I think that’s one of the keys.

As I said in the Full Committee, we have the two Subcommittees here now, but there’s a real possibility that we’re going to need to bring in the Standards and the Privacy Subcommittees as well in terms of what me might accomplish that’s going to have a big impact.

MS. GREENBERG: Obviously this is a problem, and I’ve been sort of the wet blanket in all of these calls, because as people are thinking of their five or ten hearings during the year I’ve had to explain that unfortunately our budget can’t accommodate that.

There are a lot of ways to be creative. One is of course to meet around the Full Committee so that the travel is maximized, the travel expense.

Another is if the Full Committee does take on a cross-cutting theme I can see using part of the Full Committee meeting for a hearing or for an all hands type of thing. Plus these two groups work together, so you might have a stand alone together or two.

So there are ways to do it. Harry and I were talking before, after I threw the wet blanket then I also threw out the rosebud, or whatever, but think about not for ten topics but maybe your top priority, what you really feel like would be the most useful thing to do. We may have to string it out a little longer than you thought, but don’t be totally constrained by thinking, oh well, we can’t have hearings.

We do have some funds in addition for writers or contract work as well. So that always can extend what we’re doing, and then take it from there. Neither Harry nor I want you to start with this well there’s barely anything we can do so let’s not think big.

MR. REYNOLDS: Let’s define what we should do, what it looks like, and then let some of us figure out how we work that out. I’d like to see you approach it that way.

DR. STEINWACHS: Thank you. Justine, Paul, any introductory remarks? Then I’ll go.

DR. CARR: I think what I want to do, I don’t know if it’s introductory or later, probably a little bit later, is just talk about the perspective that emerged in our subsequent discussions in late August about where we go from here with the patient centered medical home. So I’ll hold that until we’re ready for that discussion.

DR. STEINWACHS: Okay, great. Blackford did you want to get something in now?

DR. MIDDLETON: Not introductory. I wanted to try to answer the question.

DR. STEINWACHS: To lead this off it seems to me both Larry, who is really sort of the point person on developing this from the Populations Subcommittee side, has put some things down.

Larry, if you could summarize that and we’ll pass it around.

And Justine put some things down and emailed them out, summarize those. Then we could open it up for discussion, with the idea that by 4:30 we’d love to come up with a couple priority items and sort of a plan on how to proceed.

DR. GREEN: I can be very brief. What you have on this one page is from Susan’s hard-won summary of that day and a half of hearings, two days of hearings, that we’ve been refining over the summer. It is not exhaustive at all, but you’ve got the whole report. But just to stimulate the conversation right now here this afternoon, I just pulled out not new ideas but the ideas that we seem to have agreed to from the summer’s work.

Then, again, not attempting to be exhaustive, if you read through the report and your own notes if you were at the hearing, there’s probably 30 or 40 things that we could be talking about. So I left the size of the page and Don’s command to keep it on one page. I ran out of room at 10, so I just quit there. It wasn’t because it was necessarily the right thing to write down, but it does, I think, this list of 10 or so does capture some of the spectrum of what we need to prioritize from.

My own thinking about this has been affected by the conversations we’ve had by phone this summer quite a bit. I think Susan really has produced a fantastic document here that really got it. And I think we should just assume that that’s sort of our anchoring manifesto about whatever we decide we want to do about VCMH, and not spend this time arguing about that. What we should do is start thinking about Bill’s question, where lies the most impact here. If there’s impact here, where is the likely place that we can have the most impact?

I regret having left off this number 11. The things we learn from the folks that are already collecting data about the patient centered medical home through the existing surveys. Because that was another very important finding and conclusion from the hearings, that there are already important measure being taken that if they were simply organized and perhaps augmented or modified in some way might be a very efficient way to move.

So I think I’ll stop at that, if that’s okay?

DR. STEINWACHS: Okay, thank you, Larry.

DR. GREEN: I would invite the Committee to get the right things on the list.


DR. CARR: Thanks. So I’m just going to read the summary that we had. The key discussion from our call most recently in August was what NCVHS can contribute to the ongoing elaboration of the patient centered medical home.

There was interest in choosing an aspect that was less well developed, i.e. focusing on the patient perspective, moving away from the focus on the medical model. This would include the growing amount of data that is not in the medical record, but is reported and/or collected by the patient.

There is also discussion about aligning the national priorities being articulated by the NQF National Priorities Partnership, which included many areas of patient centric focus.

This led to a stated preference in our last call of moving to a concept of patient centered health, as opposed to patient centered medical home. The idea is not to suggest as an alternative to PCMH, but to compliment PCMH with greater structure and focus around the patient entered data.

I know Larry joined late, and Blackford was not able to join that call, so we may need to hear more from them. Aligning the topic with the quality charter that we’ve put together, and themes of interest, the topic might take shape in the following ways.

One, defining the gaps for the patient, e.g. the patient’s desired outcomes, or the patient’s reported functional status, or the patient’s understanding of the disease and care plans.

The second issue is defining gaps for providers, measures of coordination of care, link quality processes to desired outcomes, partner with ongoing initiatives NQF NPP, highlight the need for patient centered health measures by measured developers, focus HER developers on needed data and measures.

So I think I’ll leave it there. But I think the idea was that we learned a lot about PCMH and the tremendous importance of it, and the tremendous activity around it, and that given our need to be parsimonious in our time and our allocation to choose something that maybe is not being worked on nationally to draw attention to that.

So that’s the gist of the patient centered medical home.

DR. STEINWACHS: Okay. Blackford, and then Mark.

DR. MIDDLETON: I guess the only thought I had wanted to add to the discussion to help my understanding is with respect to this movement, which I think you can still characterize as a movement, as opposed to an established practice pattern or best practice model per se, have we figured out, someone figured out how the health plans will respond to patient centered medical homes.

Certainly we don’t want to get into the situation where we’re studying something which has not yet been endorsed or ratified or paid for in any way by the plans so that it becomes necessarily therefore a flash in the pan.

So I’d like to understand how the NCVHS studies how payment with respect to new innovative technologies and how we then help understand the data and information requirements. But I guess since this is one of a series of efforts in primary care medicine gate keeping, and what have you, have we addressed the fundamental business model that’s going to support patient centered medical home, and thus make our work much more relevant and valid.

The only other thing I’d add to Justine’s comment I think is that there is increasing momentum growing, I think, because I witnessed it at the HRQ annual meeting last week in Washington, between the measure community, the informatics sort of clinical decision support community and the clinical practice guideline community. I would strongly suggest that this is going to be something where NCVHS could be smack dab in the middle.

Thinking about data standards that apply to and could be used by both clinical practice guideline and developers, the measurement community, and then finally those of us trying to worry about implementing HIT with decision support, it seems to me NCVHS’s role has to be central in there somehow. I don’t know how exactly it should be, but it also fits in I think to this line of thinking.


DR. HORNBROOK: I’ll take newbie as exemption here, because I haven’t been part of this conversation for a long time.

First, number one, creation of reliable patient registries. This Committee should be societal in its orientation, not patient specific, therefore it should have population based medicine. The whole issue of the denominator should be a very important part of this Committee’s mission. So finding the people who aren’t getting care, finding the people who never have any kind of entitlement or access to care, is just as important to finding somebody who’s a patient somewhere.

Secondly, primary medical home takes your eye off the issue of specialty care. Inside the prepaid group practice world one of the economic engines that I think is extremely important, but nobody seems to pay attention to it, is the checks and balances between primary care and specialty care. So we have a capitated system in Kaiser with a fixed number of primary care docs and fixed number of specialty care docs, and a little bit of overage for community based care when things are all piled up and there’s no room left at the end.

But the specialty specialists want to do specialty care, they don’t want to do primary care because that’s their most important value added. So when their offices get clogged with too much over-referral it goes back to the primary care doc saying please don’t clog my offices with your over-referrals.

By the same token, if a specialist is worried about their financial bonus at the end of the year they don’t want to get patients who are late referrals because they’re too advanced and too expensive. So they go back to primary care doc and say, hey your scope of practice is too broad, you need to send me patients sooner.

That kind of checks and balances is kind of the culture inside a multispecialty group practice where you’re working against a single financial incentive for all the patient members of that group. And I don’t want to underemphasize the fact that financial incentives and the clinical incentives work interactively here, because the best patient is a well-controlled long-term member. Not a brand new young patient, because they will get sick eventually and you better take care of them earlier rather than waiting until too late.

Finally, thirdly, again on societal preferences, the word “patient” means you want to make sure the patient is happy. Patients want everything, they want the black hole. A way to get out of that is to emphasize societal preferences, so when they want to improve patient healthcare we’re talking about societal preference weighted health status or health utility. Not the patient who’s sitting there in the chair or in the exam room, because they’ll want more than anybody can afford. And the way to deal with this issue, of course, is to look at preference weighted health status, and I’ve never seen that anywhere in this Committee’s scope yet.

But I know in economic evaluation that is the gold standard for measuring what you produce for patients. You don’t ask the patients what makes them well off, you ask society what you want to produce with your limited resources that makes all of us as a societal group well off.

DR. CARR: What was that term again?

DR. HORNBROOK: Preference weighted, which are determined from the societal sample, not from the patients at the point of care. So I do a health utility index or a quality wellbeing index with UROQUAL, the preference weights are coming from a general population sample, not from the people who are actually there, although they may be filling out the instrument about their particular functional status. But the weights to score it, even the SS6D, has a set of U.S. population weights that are independent of the patients. So it’s how valuable you put being blind, or vision loss, hearing loss, loss of motion, pain, loss of energy and fatigue, etcetera.

MS. GREENBERG: Just for the record, we did actually visit this topic several years ago and we had several presentations, etcetera. Obviously, there are controversial aspects of this type of measurement, but I don’t know if Virginia wants to say anything about this whole nation initiative.

DR. HORNBROOK: Just last editorial the EHR gives you a measure of input. You still don’t have a measure of output. And this Committee needs a measure of output. We need to put together a dashboard for the United States healthcare system. Until we get into preference weighted health status we’re still going to be behind the eight ball.

DR. STEINWACHS: I’ve got Bill, Matt, Carol and Jim, and Paul.

DR. WILLIAM SCANLON: I want to follow up on Blackford’s comment, because it raises a discussion to a level I think where we need to be, that is fundamentally we lack an information infrastructure. What we really are thinking about in a lot of conversations is how do we improve care either internal to a practice, including medical homes, or how do we improve it by extracting information and using that to try and influence what happened in practice.

At this point in time we don’t really have the ability to do either, and that’s the fundamental difficulty we face. The question is can we be at a high level and do something influential, or do we have to come down and look at things at a lower level in order to be effective. I think of it in some respects like we’re in a road building mode here, and we’d like to build roads, anything and go across, but maybe we’re not going to be capable of doing that, we’re going to have to build a road that is narrow and therefore there’s only going to be certain things that can be accomplished by it or be used by it. That I think is a choice that we have to face.

If we can operate at the highest level feasible and still have an impact, I think we’re going to be better off. Because there’s so many aspects that as we move down that we could look into, we could be effective, but we wouldn’t necessarily have changed things that much.

DR. STEINWACHS: Matt, you’re next, then Carol.

MR. QUINN: I wanted to recognize that the thing I thought was really valuable, and this was captured in the report that came out, was that we brought together a lot of disparate people who may or may not have come together in the same room to discuss the patient centered medical home issue, people from different perspectives. And I’m just amazed every day at the people from all over the place who are putting a lot of energy into the medical home concept, whether it’s the PCC or ARC or it’s I hear about different people doing different things, CMS, Commonwealth, NQF, NCQA, a lot of people are involved in this and putting a lot of energy. Everyone with whom I’ve spoken is interested in sharing those things and sharing those things with NCVHS.

I spent a lot of my time thinking about the research agenda for ARC on this, and just trying to synthesize all of these activities into, okay, so what is going on. I think that without having formal hearings or anything like that, even just our regularly scheduled Committee hearings, there are people who would be overjoyed to provide white papers, to provide presentations on the activities that are out there, specially tailored to our perspectives.

We had a listening session on medical home last week at ARC. I think one of the things that absolutely should be very high on the agenda and unique to the purview of NCVHS is looking at our existing federal, and state maybe, data assets, and saying how can we measure different aspects of this, valuable aspects, that can inform CMS and states and others on the capacity for expanding this as a concept, whether it’s working, etcetera. And people like Doris Lefkowitz and some of the people here could be very valuable in that. We just need to give them some guidance.

The other thing that I thought, there’s a lot of measurement activity that’s here, but I say don’t do it in isolation. There are people who are thinking really, really hard about this right now.

And then finally, this data model guide to the design of the PCMH is really important, and I think a key way of differentiating this from a lot of the other work that’s going on right now is absolutely including the patient as the data crosspiece for that, as well as including patient communication with their provider, patient communication with other patients. I’m on one of the workgroups for PCPCC around health IT in the medical home, and David Kibby is one of the subgroup heads on that. A very valuable guy that would love to talk about this.

DR. STEINWACHS: Great, Matt. Carol.

MS. MCCALL: I’m going to go back to Bill’s comment, and I guess by way of extension Blackford’s. I would agree, we do not have an informatics infrastructure in this country, not one that is useful in the way that a lot of us have talked about. NCVHS, we wrote a paper and it was published dated 2002, called 21st Century Vision for Health Statistics. And it talks about that vision for a health statistics enterprise quite elegantly and eloquently. It has a conceptual framework, it has core values and it has guiding principles, and it talks about them in an executive summary and goes into detail and makes recommendations. So I’m now going to take a left turn, then I’m going to come back to those comments.

As respects to medical home and the hearings that we had, and I will say now that I was not at them and I heard they were delightful, it is my opinion that our role is not to figure out how to do medical home, whether it’s early or late, that’s not our job. What we talked about in our group is that our role would be to use that as a lens through which to understand through hot topics unanswered or under-conceptualized policy issues that need attention that we can help on. We don’t create measures, we don’t design data models, as much as anyone of us may love to do that as part of our day job, that’s not our role. We’re a public forum, we help craft information policy.

I see us at a turning point in health IT, at a place that we were not when this paper was first written in 2001 when being crafted. Technology, our uses of it, they’re night and day, and it’s gaining steam in HIT and HIE. What we heard today from Kory was nobody’s really thinking about what to do with all of this once we start getting it exchanged and building it up in our warehouses of data. Now is the time, now is the time. It’s almost a blank space. So we can begin to craft and even put in the reasons why, the lunchtimes comments of this is a federal highway system, this is a public good, so before people start building more islands and not putting up lopes.

So those are my comments.


MR. JAMES SCANLON: I had two thoughts, I think. And, again, this is a big issue, and what I’m trying to think of is how does this fit in with the NCVHS mission and role and what the Committee does well. This is not the National Health Board, so you can’t make general recommendations about how to reorganize health in the U.S. We’re all the data focus, we’re data, and we’re health IT.

And there were two issues that possibly the Committee could shed light on. But, again, I don’t know if it’s necessarily the right place to go at this time.

Number one was at an AHIC meeting this issue came up about the medical home and how wonderful it is, and the question came up that maybe we should look at this as a use case. In other words, look at what would it take in terms of standards and terminology and so on, and information infrastructure to support the medical home. And, again, the use case kind of a concept where you look at this is the desired end, this is the functionality, what are the standards that support it, and what were the gaps.

For various reasons that was the discussion, they decided not to go there, and I think partly because it was thought to be more of a concept and more ephemeral, to be honest at the moment than something you could really build standards for. But it may not necessarily be true, that was their decision. This Committee could do that through hearings, through helping to define and identify what exactly it is and how would you know it was, and what are the related concepts. That’s certainly one direction to go, and I don’t think anyone else would be going there.

The second one is I’m echoing two or three other folks who have said the way we usually monitor some of the developments in healthcare and health status in the U.S. is through our surveys, through our administrative data systems, through research sometimes, as well. And, again, the idea of looking at the capacity of our current survey administrative data and research efforts that kind of shed light on what exactly is going on here and how does it differ from other concepts, and what are the real objectives, that might be a focus that the Subcommittee and the Committee could focus on as well.

In other words, you would revisit and extend and assess the major surveys and data sources and administrative data that the Committee is quite knowledgeable about, with the sense of how do we even measure what the prevalence of such entities is and what their effectiveness is. So that would be more of a focus on the data.

It’s either data policy and content or health IT standards terminology kinds of focuses. Getting it to policy generally, I don’t know that the Committee wants to make general recommendations there.

DR. STEINWACHS: Blackford, did you have a reaction to Jim?

MR. JAMES SCANLON: Data policy, not reimbursement policy or delivery system policy.

DR. MIDDLETON: A reaction and a question and yet another newbie question.

I guess what I struggle with sometimes, Jim, with the charter – am I used up now? Okay. With the charter which I did review before coming in for the NCVHS, I would just like to explore the boundary about the purview in the charter. It strikes me that oftentimes the statutory public advisory committees or what not, if they are at all like Congress, would want to assess or evaluate the impact of their recommendations or what not. Congress certainly will call for an evaluation of whatever funding and what have you. To what extent do we wish to evaluate our own efficacy with respect to achieving national goals and objectives, with respect to data and information policy and what have you?

What I’m thinking about specifically is the repeated questions I got yesterday speaking in Vancouver, BC. It was a long flight, at the HL7 Plenary on behalf of Barack Obama, I’m an advisor voluntary to the campaign. Both I and Steve Perente, who was representing the McCain campaign, were asked what happens to ONC, to HITSP, to CCHIT, in the next administration if it’s yours. I think we have to ask the question as NCVHS what happens to our recommendations, how efficacious or what impact do we have, and are we actually materially moving the needle?

I know the HRC gets evaluated by how quality is moved and how other types of indices are moved in their appropriations. To what extent do we evaluate ourselves or are we evaluated by others outside.

MR. JAMES SCANLON: With the first part, someone said there was an election in November, you’re right. And so the whole House of Representatives will be up, and obviously we’ll have a new President and a new administration. Obviously we don’t know who’s going to win.

But I think on the health IT side there are two things in the Committee’s purview that I think will continue and go on in both campaigns.

You know better than I, Blackford, there’s a continued interest in the whole health IT, interoperable health IT, EHR, PHR, and so on. That whole movement forward is part of both platforms, and the Hill as well, there’s several bills out of the Hill. Probably going to run out of legislative days this year, but it will come up again. The Hill will be interested. And it’s more of a bipartisan focus on the health IT part of it. Where they differ it’s more about more government and less government involvement, grants, and financial assistance less so, market forces.

If everyone agrees on the general direction and the goal it’s become to some extent a bipartisan issue. Again, it’s in both, it’s in the platforms of both parties. Again, the detail, we’ll have to see what the detail will be.

What will happen? You’ve raised a good question. So based on that, the general direction of health IT policy will continue. I don’t think someone is going to say now let’s forget about standards and let’s do something different. But perhaps the speed, perhaps the interest, perhaps the details might change, but the general direction we’ve been talking about, in fact this Committee helped establish, and even get ONC and others on its way, I think they’re going to move forward.

Now, other things will happen that will conceivably be an AHIC’s successor, which will be a public/private partnership. So things will be done somewhat differently conceivably. I think part of that, as you said, part of that is looking back over we’ve finished in a way, I wouldn’t say phase one, but we’ve finished a chapter, we’ve turned a page on one way on the early stages. We’re now reaching the stage where we’re approaching this public/private partnership. What did we learn from the first way through, what are the accomplishments, what would we want to retain, consolidate, strengthen and expand, what do we really want to change, and what would be the way to go forward.

So those will come up in terms of health IT policy, and it will be partly the legislative process, partly the new administration, partly the AHIC’s own self-evaluation. And I think they agree to that. I think I was on some of these boards as well, set up the workgroups. And I think from the industry and everyone there was this notion that we had to, you know, let’s pick the best of what we’ve done, what have we accomplished, what have we learned, and then move forward from there. Don’t necessarily move everything forward, the old AHIC.

Those are general ways there. And the other way this Committee gets involved is sort of in the data for evaluation. It’s in the data to support health reform, data to support policy research, data to support evaluation performance. Not so much saying what the measures will be, but assuring the data, looking at the gaps and so on. The Committee has a very good record, it’s well acknowledged to be very good in that area. So those are kinds of the parameters of where we would go.

DR. MIDDLETON: Can I just follow up a quick question. I guess, Jim, is there a built in method for NCVHS to evaluate itself? Any board of any corporation across the country does a self-evaluation once in a while. Do we evaluate ourselves or do we evaluate the policy mechanism in this country for HIT? I’m thinking specifically of our self-evaluation and who’s looking at CCHIT or HISPE saying it’s working or it’s not.

MS. GREENBERG: I’ll answer the former, I’ll attempt to answer the former question. First of all, the mother Greenberg role here of in the 26 years I have worked with this Committee, believe it or not, I’ve done a few other things too. The quintessential question raised by members has always been do we make a difference; of course, understandably so, as I’ve always said. This is a volunteer group, I mean we may pay your travel, may pay some, but this is a group of volunteers and people who have a lot of other things to do. So they want to know, they’re spending their time here and it’s a very good question.

It’s always been a hard question to answer because this is a committee that has very broad scope, which you know from reading the charge. So I see the National Vaccine Immunization or Advisory Committee is upstairs. If they make recommendations and those are adopted by CDC, hey, it’s a homerun. They’re very focused, etcetera. We’re not that kind of a committee, very broad scoped. So it’s difficult to go like that (what I’m doing is making a check).

But I would say a few things. One is that since the reorganization of the Committee and the Subcommittees and everything, after HIPAA, then of course the MMA following along with that, and the Committee was actually given very specific areas that it needed to make recommendations in, it’s been a little easier to track at least whether the recommendations were picked up and the extent to which people moved on them or used them or they were ignored. That was always the big question in the past, are we being totally ignored, and it’s kind of hard to know sometimes.

Although I think there are always measures that are indicators that the influence went well beyond the Department, even though the recommendations went to the Department. But then that’s been primarily quantitative. Then there’s that next qualitative question of okay, they adopted our recommendations, have they made any difference.

So we hear about e-prescribing, and some of these things where in some of these areas again there’s a window of opportunity. But what we have done, what we do as a routine way, although I think self-reflection is always a good thing and particularly coming up to an anniversary it’s a particularly good thing. You might think about how you can build that into whatever you’re going to do. You don’t want to just look back, you obviously want to look forward. Of course, we do get reports on and we do track whether we get responses and what kind of responses we get.

There are two things. Every year we have to report to GAO, do an annual report to GAO which I believe is public, and we report, and Debbie has become a master at this, but what percentage of the recommendations have some traction or have gotten into some policy, you know, we’re not dead on arrival as it were. It’s a fairly high percentage in the last several years.

The other thing is that Gallup has worked with I think it’s GAO to do a survey of advisory committees, which is as to what the members think about the effectiveness of the Committee, they haven’t done that for a few years, but this was done on a few occasions. Some of you may have been around long enough to have responded to one of those. So what the members think, what the exec sec thinks, what department policy makers think, so we have some of that data too.

There are some mechanisms that are either annual or infrequent or periodic. But I think you asked a question that deserves an answer.

DR. STEINWACHS: I was just feeling the pressure from the clock.

MS. GREENBERG: Sure, sure.

DR. STEINWACHS: I now have a Chair who says on time.

MS. GREENBERG: Okay, that’s my answer.

DR. STEINWACHS: Paul, you’re next. And then we need to bring the discussion –

DR. TANG: I’ll try to bring us back to concrete.

DR. STEINWACHS: Concrete? I thought you were – where are the lumps here?

DR. TANG: But I’m going to use a strange analogy at first, because I’m going to compare the PCMH to a booster seat, where I think what we need to do is build safer cars. I think Carol said the 21st Century data needs that NHII paper, and what I got out of that was the overlapping diagram which says –

MS. MCCALL: That was a different paper.

DR. TANG: Sorry, the NHII paper. All right. So in a sense that was five years ahead of its time, meaning let’s get data in, good data in, then we can reuse it for lots of things, including all of the population statistics and improvement. I think we’re now ready to move on to trying about another movement.

And the reason I go to the booster seat – well, let me piggyback on what our core mission is, which is the data. Maybe our mission is to look at the emerging data needs for a health system where the patient comes first. And talk about patients as a first class player, instead of just being medical system around a patient.

The way I look at the booster seat, the Ad Council actually helped create this advertisement to get parents to buy booster seats. Oops, they forgot, check the availability of booster seats. So there wasn’t enough supply to fit the new demand they created for something which is treating the symptom of needing better cars, or better drivers.

In some sense, to say that we need to have more medical models to have patients flood into the gates of medical homes is a little bit ludicrous when we don’t have the docs. We certainly don’t have the primary care, and we don’t have a projection of the primary care provider’s going to be around. So in a sense it’s a booster seat for me.

The other piece though is let’s focus on the safer cars or the defensive driving. Now, guess what? We all of a sudden turn to the driver, i.e. patient. Can we teach that person and can we empower through data those individuals to live healthier lifestyles, and actually make perhaps more appropriate decisions at the end of life. Both of which are the bigger problems than getting people to come into medical homes. I mean that’s a personal view.

A little bit on Matt’s point, should we look for the data that we need from the patients and to give back to the patients, help them take more control over their health and their life span.

That I think might be a very different approach than to keep building upon the quote medical model of health care when we don’t have enough.

MS. MCCALL: I support that a thousand percent.

DR. CARR: I too. I mean I think that we have a finite amount of resources, and we want to pick something that is big enough and is actionable, and that aligns with contemporaneous initiatives. I agree with Paul that this is – even hearing today about PHRs I think it just reinforces the importance and the value, and the role we could play.

MS. MCCALL: Adding on just a few comments about PHRs. There’s a lot of talk about the technology, and yet it reminds me of a GPS device. I don’t want a GPS, what I want are directions, right? I want to know where to turn. I think we need to keep that in mind. And what that means is going out and talking with people. It also brings up a statistic we were throwing around at lunch. Looking at medical home or any sort of medical centered model is like watching a party through a keyhole, we’re only catching a little bit. The stats that you were throwing out, I still want that reference, I really do, 40 percent of what was the relevant – 40 percent of X, I want to get the words right, 40 percent of what?

DR. GREEN: The question is, what are the understood sources of variation and dying before your time or suffering when you didn’t have to. And the explanation of it is about 40 percent are behavioral choices, 30 percent is your genetics, 15 percent is your socioeconomic status, 10 percent is shortfalls in medical care, and 5 percent is your environment. I hasten to add a real problem here, and it’s been in our calls all summer long, we are really hung up on this word “medical” and this word “patient.”

I have a suggestion for how we can get ourselves out of this. What we are actually interested in from our hearing are the objectives and goals that have been put forth for this thing that is temporarily called “patient centered medical home.” As we plan and anticipate the future redesign of the delivery system, there are data issues that this conversation is raising. If we could get over what it’s called and whether or not we’re going to a keyhole to look at everything, we’re not going to keyhole, this group’s not going to go to a keyhole. We’re going to take a close –

MS. MCCALL: That’s what you witnessed was a hijacking just take place right there. What I don’t want to do is become so centered on this particular model that we fail to look more broadly. So it’s not don’t consider it, it’s consider it broadly, and consider other things as well.

Because the point of this is to try to understand, is to see around corners just a little bit. And as we try to see around those corners into new models, models that are not always focused on the current medical one. We have to hear from people, we have to hear about businesses that are trying to build to meet those 40 percent, 30 percent, 15 percent issues.

If we do that I think we’ll go back to data, I think we’ll understand what the data needs are that are different from what we think about today, what any of the policy issues and statistical needs are around that, and then I think we can push forward.

DR. STEINWACHS: I have Marjorie and Mark, then we have to try and come to some consensus about what we’re going to talk about when we go to the Executive Subcommittee part. Marjorie.

MS. GREENBERG: Well, I hate to say this, but all right, because first of all, Larry, you made two contradictory points. You noted that healthcare is only really quite a small percentage of what impacts a person’s health status. But then you were talking about the importance of understanding the healthcare delivery system. Well, what happens in the healthcare delivery system is healthcare.

Obviously, healthcare is very important to this, certainly it’s important to our economy, there’s no doubt about that. This is a Population Subcommittee, and we have to look at the group’s charge of course, which we haven’t looked at yet, and everybody is supposed to be revisiting their charge.

Where do you get information about the population? Not just people who are in the healthcare system, but people who aren’t in the healthcare system, and people’s feelings about health defined very broadly, maybe all the way over to wellbeing, and there are issues as to how far over to that you want to go. But you get that basically out of population based surveys unless you have a defined population, and even that is frequently only going to be covered people. Even the people you don’t see, at least they’re covered. And we know that the state of our population based data system is in great peril.

It gets us back to this vision for health statistics. I mean that’s what you’re talking about really, you’re talking about population data, not just data about the healthcare environment. There was the influences on health was the schema, the vision, of just what you’ve described here. I think that’s the problem a lot of people were having with the patient centered medical home concept, because it really just focuses on the delivery system.

We know that’s important though to people. We have the health affairs issue, etcetera. I mean you have some things here in Larry and yours that are very patient centric. But then if you could make those more broadly maybe person centric, get into things like patient outcomes, you get into things like functional status, which we’ve skirted around over the years.

So I think there’s room for this, but I just want to take you back to this idea that this is the Population Subcommittee. Now, it’s also the Quality Group, and the Quality Workgroup is more focused or has been on the healthcare delivery system. So it’s a question of whether you want to work together on something or the Populations Group want to be really more focused on the population data system and the Quality Workgroup something else.

DR. STEINWACHS: Bill, then Mark.

DR. WILLIAM SCANLON: Let me just say that in the meeting after the meeting we did question our identity, well, the Populations Group, whether we’re going to continue what we’ve done in the past or whether there’s a different perspective. Part of this whole issue is do we improve populations health by looking at the population in the aggregate, or do we improve populations health by starting an intervening micro-level individual level and letting the benefits float up.

So there is a question of this point in time there’s a lot going on at the individual level where that may be our most important contribution.


DR. HORNBROOK: Two things. First, I took the medical home discussion as kind of a metaphor. I mean I realize this Committee is not the medical home committee, it’s not the health reform committee, it’s not the health services delivery committee. I saw it as kind of a metaphor for in order to manage it you have to measure it. So if we’re going to figure out how to manage the health of our population we’ve got to figure out how to measure it. That’s the population not just patients and not just users and not just insured people, it’s everybody.

So we have a unique responsibility to find the people who are disappearing who are on the streets, who are homeless, who are too sick or too disabled to be involved in things, too separated.

The way of going back to the mission of – I looked at the charter and we’re supposed to set health data standards, so I want to remind you that we’re at the threshold here of digital imaging revolution where all of the silver films will disappear and it will be all digital data files, and those can stay with you forever. I mean, we’ve been reclaiming x-rays for years and years, just keep them about seven years and they disappear, get the silver out of them. But with digital x-rays they’re going to be around. So people are going to be looking at digital processing of x-rays for cancer and for other diseases across your lifespan. We need to think how to set up an IT system that’s going to all of a sudden have to process all of those digital images.

And genetics and genomics. If you’re in the CTSA world, if you’re in the world of biomedical research, genetic and genomic revolution is going on really fast. All of our EHRs and PHRs are going to have genomic data in them, and we got to think about the day when everybody’s genome is actually a set of data for all of us, and it becomes your lifelong thing.

MS. MCCALL: Can I have one more comment? And it’s actually a recommendation.

DR. STEINWACHS: Okay. If Blackford defers to you.

MS. MCCALL: Thank you. Only because I’m late for something.

I want extend Bill’s comment and make a recommendation. But the comment was do we come at it, measure the population, or do we come at it what I would call bottom up. And my recommendation would be that you need to measure a population, but to make it actionable you have to have the texture and the differences. That’s the whole point, we’re not the same. And you’ve been highlighting some examples for us. We need to know where those differences are, what tends to drive them so we can make them actionable for ourselves.

So if it’s a bottom up approach that can come into a top down view, I would also suggest that we then look at some of the views in the papers that we’ve been talking about. They suggest a very broad context of things that affect our health as well as our healthcare. And those are the 40, 30, 15, 10, types of things. Now is a good time for us to address those data needs, because we’re in an acceleration part of the curve on the health IT and health exchange. Let’s make sure that when we go to kind of drive that spike the rails are lined up.

So I think that it is a good timing to revisit from a bottom up kind of broader issues from the outside in, so that we can make these things meet. That would be my recommendation. See you all tomorrow. Thanks.

DR. STEINWACHS: Okay. Let me just try this and see.

DR. MIDDLETON: I didn’t lose my spot though, did I?

DR. STEINWACHS: Oh, Blackford, I just was ready to grab your spt. Go ahead.

DR. MIDDLETON: I’ll be brief. I had a bit of a flash, and it’s late.

DR. STEINWACHS: We have medicines to take care of these flashes, you know?


DR. MIDDLETON: What I’d love to see in a way we’re perhaps on the verge of an information rich environment. I want Google Earth for healthcare, I want to be able to provide a patient a roadmap for their care. I want directions for the average citizen to navigate the healthcare delivery system. That’s totally different than healthcare focus, provider focus, blah, blah, blah. When you think about the massive amounts of data that Google has at hand to provide you directions from point A to point B, anywhere in the country it’s extraordinary that they go through all the machinations we’re going through to get those data. No way.

Could we do something maybe analogous in healthcare? Absolutely. Then we can provide a roadmap after comparative effectiveness research, socioeconomic and preference based analyses of value, blah, blah, blah. But we need to be able to provide a roadmap for individual patient and secondarily of course for the provider, because we’re still lost in this U.S. healthcare delivery system.

DR. STEINWACHS: Let me try summarization, and then we’ll see how far on or off I am, and then we’ll find another Co-Chair here. Luckily I have a backup here.

We are talking about things that really come into the vision or health statistics and health data and information. So that’s I think still an important backdrop for us.

We also have on the agenda here today, and we’ve sort of gotten into it, Jim was whispering in my ear, we have the idea what are the data needs for healthcare reform, both to measure the impact of what’s going on and to help feed that into the policymaking processes and the practice processes.

So that’s part of both a vision and it’s part of a set of needs that are at the population level very definitely. But break that down into smaller and smaller areas and hopefully we’ll have some time to talk about CTSAs, and populations that are even more define.

We also have on the table here what I personally find more attractive is this idea of what does the patient need in information, what do we need from the patient for information. We can broaden that out for the person, because we’re talking about a set of information that it doesn’t matter whether you’re healthy or sick. Actually it’s like a lot of this information probably when you’re in an average stance in the population or most of the time healthy, so we understand better what are the detriments and what.

So what do we need from the person out there that feeds into our understanding of the health system and the success we have? And I think, Blackford, you came back to it, what do we need to provide? I talk about decision support, other people talk about other pieces, the roadmap. But we as patients, it’s increasingly bewildering how to use the information that comes out of it.

If we pursue this, which I think it’s very important to pursue both at what are the data needs broadly for evaluation healthcare reform, and to focus particularly on the role of the person in society, patient. Then I think what we need to discuss is how does that proceed between the two committees, do we break that up, do we do it together. But I think it honors both where we are as concerned with population health, at the same time increasingly viewing the healthcare system as trying to be an actor in both producing some health as well as dealing with crises and management issues.


DR. WILLIAM SCANLON: I think that’s a good summary. I would like to put on the table the issue of should our question be what is it we need or how are we going to get what we need. Because I think there are other people who are also looking at what we need. Again, I go back to this Committee may be unique in terms of looking at the hows.

And the hows for me in some respects – we won’t have to do the health reforms, so I’m using up the health reform time here a little bit, the hows to me in some ways are levers that we have available to us, and they are things like the HIPAA standards, the common rule, PHR, ERH, you know, health information exchanges.

What do we want all of those things to be like in order to get the whats that we’re interested in? And, again, it’s because so many people are looking at the whats that I’d say given our limited resources we should be asking how do we make these tools most compatible with meeting all kinds of different people’s needs, because that’s where all these good ideas are stumbling. They’re not going very far because they’re so limited in terms of the amount of information that they have. And I really worry that we’re going to be rejecting some of them because we’re going to say it doesn’t work.

We’ve been there before in the past, and the Congress was mentioned here today, it takes a decade for memories to fade and an idea to be tried again.

DR. STEINWACHS: Unlike 17 years to get a drug to market.

DR. WILLIAM SCANLON: Let’s not go down that path if we can avoid it.

DR. STEINWACHS: Dale, you want to?

MR. HITCHCOCK: Just a quick one, Don. You would have really meant this when you were talking about persons and patients, but I think the language could also be broad enough to refer to families and the choices that they have to make.

DR. STEINWACHS: Very important, I agree. Okay, Matt and Larry.

MR. QUINN: As we look at this, how do we supply data, or how do we supply what’s needed for these efforts, and I think that we have a unique perspective as an organization to look across the government and say what assets do we have for measuring things.

To view this in sort of a PCMH lens, when we’re contacting people to testify a lot of people wanted to talk about health reform, they wanted to talk about payment reform and how our primary care docs should get more money. I said let’s not focus on that, let’s focus on if payment was not procedural what data would you need for that, how would you measure that, what additional and different data would you need? Would it be paper performance data?

I think a good lens to look at what we do is how are we going to make that happen. That’s looking at data models, that’s looking at entities and structures that could support that. So for example, health information exchange activities like Think Health up in New York. That’s a model that they’re trying to grapple with, supporting patients medical home payment model and measurement with that entity.

I think that that focuses it on the purview of the organization.


DR. GREEN: Matt said about half of what I was going to say, so that will save some time.

I want to go back to Jim Scanlon’s comments. It seemed to me like that was the thing to do. We’re supposed to ask the question what are we going to do next. It seems to me the answer to the question was it’s sort of like this TCMH thing, is the train running, it could be used sort of like a use case, what would it take to report potential classifications, IT standards, if it’s going to be there.

Back to Justine’s gaps, they had gaps for patient steps with providers, and then people had gaps for national statistics. This is a lens to look at those gaps. It is very, very hard to decide we’re just going to think about how we’re going to do things. It gets a lot clearer when you put a model out there and let people start shooting at it.

I want to weigh in, I think the answer to what the Populations Subcommittee – this doesn’t beg your question at all – it’s very hard to know who’s not in the system. You can define who’s not in it, and write their name down, and you can define who’s in it and write their name down and everyone gets left is in the other group, right?

I mean we can get there, this is not antagonistic to that viewpoint at all. In fact, I think it’s enabling. This is the thing that I have heart for, and this is not such an intellectual thing, this is an intuitive thing. This sure looks like the first serious redesign of the way we do personal documenting in over 170 years. And this is not the right committee to sit by and watch it go down without taking a look at what the data needs and expectations and possibilities are.

Every now and then a substantial redesign comes. We talked about we thought a substantial redesign would occur in the early 90s, and we’re willing to think this one may go into the – doesn’t. This opens up redesigned healthcare that actually addresses those other 40 percent of issues. You go talk to the people who are working on the patient centered medical home and they are working their hearts out to link the people in their community up to community resources through IT enabled solutions that don’t let them get to the practice at all, and they’re doing it all over the web. And they’re saying, could someone just give me a little help in getting this done, I’d like to do that. What would help look like?

So I think the data requirements for the redesign personal delivery system is dead center in the NCVHS’s charter, it’s dead center in the population subcommittees, and quality depends on it. So it’s a homerun as far as I’m concerned.

It’s not here now, it is more of a journey than a destination, and the destination that some people claim we’re going to get to all of us around here know that some of those things are never going to happen. But something is, and I don’t want to sit it out. This Committee’s pretty well positioned to take advantage of this. What’s the risk, what’s the worst possible thing that could happen to us? We might waste a couple of years and a couple of hearings or something, and a couple of reports that, you know, all those grandiose ideas in the tank, it never happened, we just wasted our time. Well, gee whiz, that’s life.

DR. STEINWACHS: At least you got Jim to nod his head up and down, Larry, that’s good. So Mark, and then we’re going to try to move onto some other topics.

DR. HORNBROOK: I just wanted to follow up on what Larry said. If you look at where the healthcare system is going, we can’t build enough hospital beds to meet the ensuing need of hospital beds if you take the same rate of utilization and multiply it by the population rates. But clearly hospitals are going to change, they’re going to become intensive care units I think, and hospitals without walls are going to become standard. That means a huge IT investment so you can take care of people who are currently in the hospital in home, get help from home health and other kinds of facilities and equipment at home.

We’ve seen our nursing homes go from extended living places now to caring for people who are severely demented and who are incontinent. And if you can do better than that you’re not in a nursing home. So we’re imposing on families more and more with very, very frail elderly folks, and with disabled folks with spinal cord injury from automobile accidents and crime and other kinds of things. And we’re teaching families how to take care of kids with special needs, and partners with special needs. Again, you need a lot of IT involvement in that enterprise.

We’re teaching parents how to take care of young kids. Again, you don’t want to go to the pediatrician every time somebody cries, it’s going to cost too much. I don’t need to go to the doctor every time I have a pain.

So we’re going to think about a whole healthcare system changing based on IT revolutions in telemedicine. And I think the information revolution that we’re seeing around the medical records is really again just a metaphor for the whole way the process of care is going to change.

DR. STEINWACHS: Do we think we sort of have a sense of where we’re going?

DR. CARR: No. I think we have two themes ongoing, and I think that my recommendation would be that we will probably address it again tomorrow in Quality and then maybe in our workgroup. To Larry’s point, I mean I think it is worthy. I do think there is a downside if we spend our time on something that doesn’t come to pass then we haven’t spent our time on something else. And I think that’s what we’re balancing, is what else –

DR. STEINWACHS: If you twist it a little bit, and Jim and I were talking about it. Fundamentally we’re talking about a stage where we’re anticipating healthcare reform. And, again, we’ve been in places where we know something just – well, Mark made the point that things are going to change whether that’s proactive from policy or response to.

So I think if you use this as a use case, which underpins the idea that we’re looking at data needs and support of transforming healthcare system, that I think might do it.

MS. GREENBERG: My recommendation is that we look at these other – I guess we split off now, or whatever – that we look at the other topics of Population Committee members –

DR. STEINWACHS: Yes, we will if we ever get there.

MS. GREENBERG: – brought to the table, and see whether if there are synergies. Because I don’t think there’s by any means consensus here, which is what Justine was observing also. I mean I like the points that you made here, but they’re really high level obviously, and we need to sort of operationalize them. And I like what you said as well, but take those and put them into some kind of actual project or initiative.

I think this one we’ve talked about enough, and then I’d suggest let’s hear about the other ones and see if there’s some synergies or some things that we can kind of pull together so that nobody is totally happy but nobody is totally unhappy.

DR. STEINWACHS: Our good manager.

DR. CARR: So I’d love to stay, except I’m supposed to be at Standards.


DR. WILLIAM SCANLON: Just one note on health reform, I mean it’s not something that we need to anticipate, it’s here. I mean we already in statute hospital quality reporting, physician quality reporting, we just added a sort of physician profiling, we have a medical home demonstration that’s in the statute, we had comparative effectiveness pass at least one of the houses. So we’re doing it, okay, piece by piece by piece. It’s not a big bill, but it’s happening. And the issue is can we support these various pieces.

DR. STEINWACHS: And I agree we need to make it more specific. But I think we have a sense of where we’d like to go.

Yes, Blackford.

DR. MIDDLETON: Don, just in observation, and maybe this has to be parked for the Full Committee. My observation is actually that we’re wrestling with fitting the topics into the buckets that are before us, as opposed to wrestling with all the issues that we’ve just been identifying. I strongly subscribe to Mark’s point of view, and I think others who have suggested that we’re in the midst of a transformation here. Healthcare in five years, ten years, fifteen years, twenty years, is going to be extraordinarily different. No matter which revolution you want to point to, there’s just going to be dramatic change.

Maybe an exercise for the Full Committee or a Subcommittee of it is to actually redo the visioning exercise, which would suggest that 90 percent of what’s currently cared for in hospitals can be cared for in home, 90 percent of the decision making currently being done by physicians is going to be done by ancillary health extenders and what not. Ninety percent of the data we used to gather primarily at the point of care is going to be gathered remotely. Those kinds of assumptions are things we can model, do the revisioning, then from that vision roadmap, if you will, decide which committee addresses what topics.

I think there’s a bit of a challenge right now fitting this single medical home thing into Population versus Quality, because it’s kind of a futuristic thing, touches both obviously, but I’d rather get the real big milestones correctly identified so they’re going forward and we know where to go.

DR. STEINWACHS: Well, Jim, why didn’t you tell us sooner that you had the answer?

MR. JAMES SCANLON: They were suggestions you’ve come around to.

DR. STEINWACHS: Okay, well, look, what we’ll try and do is we’ll try and put down on paper and see if we can capture this. Yes, go ahead, Jim.

MR. JAMES SCANLON: Well, the health reform we’ll get to a little later, but the data for policy and health reform is – could be another dimensional swap, it could the population focus of health status and health resources and costs and insurance status, and modeling. It could be all the tools and resources one needs to evaluate and develop for reform ideas. So that’s a population focus or for not quite medical home healthcare. But, whatever, they both are populations.


DR. HORNBROOK: Don, I just put on the board why I thought I was brought into this Committee. My conversations with NCVHS staff before I was nominated, we had a number of conversations about the Kaiser medical records system and whether it could help NCHS do some of its surveys, and the whole idea of this tremendous flow of information going over the electronic internet these days, and could we figure out ways to tap into that, systematically and then correct for selection bias. I thought that was part of the innovation that the Center wanted to do when they found that their budget wasn’t going up the same amount as the costs of doing real rigorous survey research.

MS. GREENBERG: Were you at the conference?

DR. HORNBROOK: I gave a talk there.

MS. GREENBERG: We’re not there, but that’s part of the vision.


MS. GREENBERG: Right. And that’s the part of the vision that really isn’t captured in the old report.

DR. STEINWACHS: Right. And that was one of the reasons for wanting to go back to update that vision, because it has nothing to do with the current transformations and how we deal with data, health data.

Mark, I have you next on the agenda.

DR. HORNBROOK: It’s the same idea. It’s another brief based on a note at the Population conference call. NIH is spending millions and millions and millions of dollars to create this clinical and translational science awards, which are replacements for the general clinical research centers, and they’ve changed the emphasis from just doing basic science and a lot of training to translational research. ALL the CTSA applications had to have a community component as part of the application. Colorado got one, we have at OHSU at Kaiser. There are 38 of them, the target is 60, so they got 12 more to go. Of course, they have budget limitations, too.

But in any case, in the OHSU, Oregon Health and Science University, Kaiser Permanente Northwest is the population that’s the laboratory for which the CTSA is accountable to NCRR to show that somehow we’re taking research findings out of biomedical and clinical research and putting them into practice to make Oregonians and particularly Kaiser members healthier, faster, cheaper. And every CTSA is supposed to be doing something like that.

Now it turns out they’re creating a network of the CTSA. So everybody got into the CTSA business thinking they were doing research at their university. Now they have to be doing research across whole network of CTSAs. So NIH is creating a national research network. There’s a huge IT component in there and we’ve already started talking across the CTSAs about data sharing, because every CTSA has dreams of a virtual data warehouse for which they can find biological specimens for basic science research, they can find women 45 African American who’ve had breast cancer and something else, and they want to look at their cell lines or something, either cells that have already been stored or cells they need to collect.

So there’s been a sense of categorizing phenotypes across the whole population. So they need to know the medical information around every single person in a defined population, they need access to these medical records systems. I’ve just been asked to find an elderly phenotype, find people who are 80plus years old who have no diseases to find out if they can find the genetic factors that make them healthy, compared to people who get sick and die by age 50 or 55.

There’s a whole bunch of these ideas floating around in terms of bridging between population research and basic science research. And obviously genetic material and genomic data are looming very, very important here.

We’re working on setting up a biorepository based on remainder blood. Other places like Vanderbilt are creating de novo repositories with fresh samples where people are asked to come in and donate, and sign a consent form so their samples can be used, or any kind of research as long as it’s approved by the IRV, and several other places doing the same thing.

It behooves this Committee to think about NIH’s vision and ask is that vision of the future of the health services and biomedical research and the epidemiology research and the clinical research establishment have implications for the national health statistics system. Can that be part of a system that we would tap into, like Kaiser, like the VA, like Indian Health Services, whoever else is running a large data system. As we get bigger and bigger in this CTSAs we should be talking to them, I think.

DR. STEINWACHS: Let me just ask one thing, then I’ll turn to Marjorie. You had also mentioned, doesn’t this link into what FDA’s doing in post-market surveillance in some ways, or that was a separate topic?

DR. HORNBROOK: It was a separate idea. The same kind of idea, except that the FDA is going to move faster than the CTSAs in terms of getting a national network, because it’s just simply more resources there for them to tap into.

DR. STEINWACHS: Yes, okay. Marjorie.

MS. GREENBERG: This fits in nicely too with bridging what’s going on in the clinical world and population health statistics if you look at the national health and nutrition examination survey, because it has years of these data and specimens, it is a rigorously designed population based survey representative of the U.S. You think of that as sort of a benchmark that you can then look more, you know, use. There’s not a very good understanding of a lot of people say once we have data from these electronic health records we won’t need these national surveys. Maybe some of them we won’t or we’ll collect the data differently, but I think it’s looking more at how they would – sort of the national surveys, which can never tell us much about an individual community or a small population or health plan, can be sort of a framework, a denominator as you pointed to.

So I think there are a lot of potential synergies that could have this Committee looking both at traditional population based data and then this expanded data, and what clinical data can bring to it.

DR. HORNBROOK: AHRQ has established a relationship with NCRR because of the CTSA involvement in population based research, which they as their spectrum of the world. Outcomes research, services research, more than any of the institutes, although the institutes do do outcomes research in each of their disease areas.

And I just thought that somewhere between Director of NCHS down to you or this Committee should have some link to NCRR at least for a discussion about strategic planning issues and where we can tap into representation across two agencies so there’s a link, because if there’s no link there’s no sharing at all.

MS. GREENBERG: Of course there are privacy and confidentiality issues too that I should have mentioned.

DR. HORNBROOK: Oh, yes, that’s a whole part of our technology challenge.

DR. GREEN: So to build on what Mark’s talking about and make it very concrete. In Colorado we have six communities that are partnering with the University and the CTSA. Our Kaiser in Colorado is one of those six, but there are six, San Luis Valley is in it, Eastern Plains, people out in Haxton, Colorado and Julesburg involved in it.

One of our fundamental problems is getting clear about the data management issues and working together across these different locations in these different communities.

So this applies to 38 now. If the budget holds it will apply to 60. If each of those CTSAs had even two or three communities, you’re talking about a previously nonexistent infrastructure that’s going to be supported by NIH to exist for the purposes of measuring things, finding and measuring things. And it’s a different thing. This hasn’t existed before.

It seems to me the question we should be asking is what are the implications of NIH setting up CTSAs with community linkages for the measurement of population held, the detection of, dah, dah, dah, run the list down. It is another, forgive me for the analogy here, but what the PCMH is to the redesign of frontline personal doctoring, the CTSA awards are to the way we do clinical research. It’s the redesign of the research center enterprise.

And you know what’s in the tank? The educational enterprise is stuck. The educational enterprise is still turning out nurses and doctors to do what they did in the 20th Century, which we’re never going to go back to.

But this is pretty good. If we have the practice side and we get the research side going the same direction the educators will follow.


MR. QUINN: Just real quick. I think one of the key pieces in designing what he’s described is standardized Medidata, and if Mike Fitzmaurice was here from ARQ – the USHIK project of which I’m not as familiar as him – is just such a Medidata repository or Medidata listing that is the necessary linkage for looking at distributed analytics. I don’t know what this group’s relationship is, but ask Mike about it.


MR. JAMES SCANLON: I think, again, the analogy here with the translational awards I guess is you’re really looking at what are the implications and potentials of those efforts for national health data, or community health data, just as we looked at the implications of the EHRs and potential record systems to national health statistics.

DR. GREEN: There are also potential applications from the work of the National Center for Health Statistics, but concrete. Two of our communities have replicated, actually they’ve done door to door surveys to characterize the specific neighborhoods where the linkage is going to occur, and they turned immediately to the national datasets and just dragged the items out of it, and are using them again. But when you have 60 CTSAs using those items the CTSA has a group of patients that may be 10 times the size of your nicely chosen sample, not a random sample. But they will have been sampled in some form or another. And the potential for that is – well, it’s not zero.

DR. HORNBROOK: I’m looking for ways also to influence the CTSAs, because they have a chance of growing back towards biomedical, towards the translational.


DR. STEINWACHS: Okay, we’re going to skip over the agenda that’s priority setting. Mark and I talked too about the fact that some of these things can run in different time frames, and so it’s not as if we have to get everything we want to do started right now. But having a vision of what we want to do and how they link together I think Marjorie’s synergies are well worth it.

Okay. Let me just being compulsive, which I think there are probably pills for also, Garland.

MS. GREENBERG: We can go a little past 5:30.

DR. STEINWACHS: I can go a little past 5:30? Thank you, Marjorie. We wanted everyone to have an update on where we were on our vital statistics conversations, and Garland said he would do that for us.

MR. LAND: Marjorie mentioned a while ago that there’s a crisis in our population surveys, and my background is in vital statistics, and that’s one of the crises that are going on right now.

Background is the national data is purchased from the states. There’s not been sufficient funding, National Center for Health Statistics has not had sufficient funding for several years to purchase the data that’s in their agreement that was reached about 25 years ago. So they have gone through various ways to adjust what their level of funding is to the amount of data that should be collected, and they’ve eliminated data sets, eliminated the marriage divorce abortion data sets so it’s no longer collected at a national level. They’ve reduced data elements.

And now the most recent suggestion is rather than collecting all of the data items or most of the data items that are on the birth and death standard certificates, instead to collect only a core set of data items and then have another set of data items that are called enhanced data items. So that if at minimum the core set would be purchased from the states and then if funding could be obtained from probably other agencies then the rest of the data items would be purchased, or if there wasn’t sufficient funding at least the purchase from some of the states.

The core is a very small core; it’s basically just a demographic. If you take on the death side the core is fairly large, but on the birth side the core is a very small set of data items, basically just the demographic items on the birth certificate for the most part.

Most of the public health indicators are in the enhanced dataset. That’s a discussion that’s going on right now between the National Center and the states is to if they’re going to pursue that course. In the past the way they have solved the problem is whatever money they had for a given fiscal year they would purchase – let’s say they had enough money to purchase nine months of data, they would purchase nine months of data, and then roll over to the next fiscal year to purchase the remaining three months of data to create a twelve month dataset. That’s been going on now for several years that way.

Now this new concept is being proposed and considered that rather than moving over more than one fiscal year to purchase a twelve month period of data, to roll back the number of data items that are collected and then see if there’s other agencies in the federal government, and they probably had to be from the federal government because I haven’t heard of any discussion of it going outside the federal government, to purchase the enhanced data items.

So from the state perspective it creates a problem because the states wouldn’t know, well should we go ahead and collect all the data items on the chance that they’re going to come up with money.

Secondly, you can’t just close down a system and start it up again. You have to maintain the systems, and so you can’t just willy nilly from one year to the next say well this year we’re going to collect it and next year we’re not. You can do that to some extent with surveys, you can reduce your sample size or whatever, but when you’re having a data system that’s collecting data from the hospitals on births you just can’t change your IT infrastructure every other year to accommodate the purchasing power of the federal government.

It’s a dilemma right now as to what’s going to happen, and states are in the throes of trying to understand it. It’s basically a resource problem is what it’s coming down to.

DR. STEINWACHS: The last meeting we met, Ed Sondack(?) was with us, and we had some discussions about this, and at least my take-away message, and Marjorie and Virginia and others can correct me, was that he essentially invited us to be part of a discussion about priorities, recognizing the difficulty of making choices and to be input into that.

Bill and I had a little discussion thinking that if we took that on, and I think there has to be another discussion with Ed just to make sure where we’re at in terms of that being a useful process, was that if that led to a letter or report that might be one way to highlight in a sense what are the costs and consequences of not being able to fully capture all the information. So these strategies may be necessary, and certainly some input to that, but I think the documentation of what are the consequences of doing pieces of it or not doing all of it, it seems to me is something we could usefully elevate in analysis of priorities.

Bill, do you want to?

JENNIFER [phone]: I’m sorry, this is Jennifer. Can I just add something? It’s hard on the phone, I can’t see.

DR. STEINWACHS: Yes, please.

JENNIFER: I don’t know if Bill had something to say, I didn’t want to interrupt.

DR. WILLIAM SCANLON: Go ahead, Jennifer.

JENNIFER: Okay. I just want to add a few things to what Garland said, and I think the one piece that sometimes gets lost is that the overall funding really has been pretty much flat-lined. Our decision on trying to go with the core is to try to invest some of the other money to get the system working better.

There are a couple of things that we hear all the time, and I know the states do too, one is a timeliness issue that we really need to get data out faster, which makes our past strategy of stretching out data collection not a good one. So we really want to invest in the system and we may need to take some short term cuts to do that, and we certainly are aware that the states will have a hard time because of just as Garland said, moving in and out, of collecting some data and not collecting other.

I think the other point that we were having issues that we need to fix, is that as is said the NCHS’s mission is to create a national database from the various date and registration area databases. And because we haven’t been able to invest in the infrastructure we have a whole set of very important variables that we do not have consistency across states right now.

When if you look at our, for example, natality report, and that’s the one on the natality side that this is the most sensitive or severe, if you want to look at prenatal care there are two sets of numbers, and you can’t compare the numbers this year to the numbers last year because they’re going to be different states that go into which version of the questions that are used to develop those estimates.

So the decisions made for ’09, and I know that Ed would be certainly open to discuss all of this, and some of the decisions about what’s in, what’s out, how do you deal with it, certainly are not in stone by any stretch of the imagination. We had to move very quickly to find some funding so that we could kind of fix the system, and once we do that then hopefully we can rethink what those items are and rethink the cross-structure and all the things that go with it.

It’s really in past years we have made decisions adjusted to make budget, and we have certainly done that in other parts of the NCHS data collection systems this year. But here I think we were really trying to make those decisions not only looking at this year’s needs but next year’s and the year after. And we would be happy to provide, and I know Garland and all of our users, all the things that we won’t have, and there are certainly opportunity costs that are lost.

Then just finally, if we could get nonprofits to give us money, well we would be happy to take it. They just have to be a nonprofit. We have gotten money from a variety of nonprofit organizations, but they do not like to do ongoing funding of core data systems. We’ve found that to be very challenging. And even other parts of federal government don’t like to do ongoing funding of core data systems. They figure that’s what we’re supposed to do.

DR. STEINWACHS: Jennifer, thank you. Garland I think wanted to say something, then Bill.

MR. LAND: Just as a partial response, certainly there are issues in terms of data quality and timeliness of some of the states. I think we need to explore as to what is the solution to those problems before we jump in to make a decision. I’ve been working a lot with some of our weaker states in the last year, and I have a feel for why there are timeliness problems, and why there are data quality problems. I guess I would just hesitate in saying shifting money is going to solve the problem.

I’m just opening up I think we need to have some more discussion over what are the fundamental problems of the system before we jump into a solution.

DR. WILLIAM SCANLON: I was just going to add, in thinking about doing something we should also be aware that the Board of Scientific Counselors has also been focused very much on this topic, both as part of the issue of vital statistics, and they’ve been going through CHS’s various programs looking at them one by one. They actually started with mortality as the first review that they did, so I think they’re probably very sensitive to the issues of how do we do these types of activities better.

But they’re also, and I was going to talk about this tomorrow for the Full Committee, they’ve been very interested in the issue of the budget. I guess any era has inflation, flat-lining is always something that’s somewhat problematic, and so they’ve been focusing on what are the implications of this budget situation, and what can be done about it.

One of the responses, and sometimes this is a good response, is what Jennifer talked about, is when you are facing tighter budget constraints you start to think about how can I use my resources better, but that is not always the sufficient solution, so one needs to think about going beyond that.

I think that if we decide here and the idea of coordinating with BSC, something that we definitely should be thinking about, they’re meeting Thursday and Friday of this week, and I will be there on Thursday afternoon maybe.

Virginia wants to add to that.

DR. CAIN: This has been a continuing interest of the BSC. We have sort of been kind of waiting for a lot of things, not really waiting, but we had several activities that were under way, both of the natality and the mortality programs have undergone review by this time.

We also had been kind of waiting to see what would come out of the National Academy of Sciences meeting that was held in the spring. I think that a report will be coming from that at some point. And it has some interesting sessions, I think some examples of how other agencies that collect data from states handle that. And I think that those were some good models that might bear further examination.

One of the things that has come out of the BSC, and particularly our Chair, is that okay we’ve got all this information now that we’ve been collecting over the past year or so. What really is the next step? So she’s proposing that we form either a subcommittee, a working group, I’m not sure exactly what form it will take, that will really take a look at that issue and try and figure out what the BSC can do to help us get beyond just the we don’t have enough money to do everything that we want, and nobody does, and we don’t have that in any of our programs at this point. So how can we get beyond that point of just saying we don’t have enough money.

I would also say the other thing that the BSC has been talking about and is very interested in is what is the core mission of NCHS. So thinking about what are the basic things that NCHS has to be able to provide regardless of how the budgets come and go, regardless of how the budgets of the other agencies stand, that there’s got to be some basic things that NCHS is responsible for, and that’s going to be another topic that will come up and that fits in with the idea of thinking about what are the basics on vital statistics.

I know that in talking with Ed and talking about the desire to help with the state’s infrastructure and the shift that’s occurring with respect to that, one thing that has come up with our board member who represents vital statistics had mentioned was the need for NCHS to get out to some of these states more often. That’s part of what we’re going to try and do as we move the money from collecting some of the data items where we already don’t have a complete set to try and do what we can to build the infrastructure of the states.

DR. STEINWACHS: We’re a little past out time. I guess it would be helpful if there’s a sense of discussion that we ought to have around priorities.

One is we started with the medical home, and I think between this Committee and the Quality Subcommittee we need to decide what the next steps are. I think I was resonating to two suggestions, that Jim brought together one that was at the level of measuring essentially the changing system and its impact through health statistics and through our capacity for measurement at that level.

The other, Jim sort of used the word “use” case, Larry used through the eye of the medical home to look at the information needs for providing the kind of care.

Larry, I’m not sure I’m getting it.

But through the lens of the medical home in a sense, that what are the information needs to support providing coordinated integrated continuing care and to support health. I’m trying to take the word “medical” out of it, too. That would really be addressing this at two levels.

The Quality Workgroup had raised really looking much more at the patient and the person piece of this, which is certainly part of that data structure very clearly. So that to me fits together, I think it’s a matter of emphasis.


DR. GREEN: I think the word “gap” is very useful in our discussion of the gaps for –

DR. STEINWACHS: Why don’t you talk into the microphone.

DR. GREEN: Part of that notion was identify the gaps, and the data requirements, the standards, the classifications, the terminologies necessary for peoples and patients, providers, and the national vital statistic system, the national statistic system.


DR. HORNBROOK: If you live in Oregon, Portland, Oregon, there are five alternative medicine schools. So the word “medical” sometimes really is only a part of the picture. I have staff people at the Center who have full Kaiser benefits whose primary care is a naturopath, which they pay out of their pocket.

So there’s increasing evidence that people are using more than just what the doctor gives them to maintain their health and wellbeing.

DR. STEINWACHS: I agree. We’ve had that discussion around the medical home, and it becomes confining as soon as you use that terminology. Then we said how about a health home. So we need a way to put that. But I think this idea of looking at the gaps.

DR. GREEN: So what we want is to know what the impact is on population health when you decide to have a naturopath as your primary care provider, versus having none, versus having a community health center, versus having a pediatrician. That’s the information we seek, part of the data we have to have in order to know the answer to that question sometime or another.

DR. STEINWACHS: Larry, can I give you another homework assignment?

DR. GREEN: You gave me one last night.

DR. STEINWACHS: You did great. You had some good words there. I’m looking now only for about three or four sentences. How’s that?

DR. GREEN: It’s getting harder.

DR. STEINWACHS: Part of that is a train that’s running for us, and so we just need to decide what those next steps are, and certainly a decision could be there aren’t any.

On the vital statistics it seems we are at the stage of waiting for the BSC, and also probably a discussion to add is what kind of role might we have. I think there was a sense that if we were to do something it would be great to have a document, a letter, whatever, by January, something like that, so it was timely and it wasn’t something that was a long process but short.

The CTSA and the idea of how you would build that bridge to NIH, I think is an exciting one. It would be good to do is also get Ed and maybe also the BSC representatives into some discussion. The BSC is the Board of Scientific Advisors, okay. Is that something that maybe together would be worth looking at, because it bridges that idea of what NHANES does on one end to what the Health Interview Survey and other things do, and it would be a way to bridge that in a way and the density of information potentially that would be an exciting way for NCVHS.

DR. HORNBROOK: This is an order of triviality, but the Academy Health NCHS fellowship, you can imagine the CTSA NCS fellowship, although you probably have enough people who are already overburdened, you don’t want to add a bunch of trainees. But still there is a way of thinking about ways we could come together more than just data.

MS. GREENBERG: Just to mention that Virginia was the only NIH liaison I think we ever had to this Committee in my knowledge, and then we stole her away at NCHS.

DR. STEINWACHS: Was that fair?

MS. GREENBERG: Yes. But then now Mary Jo Deering is now the new NIH liaison, except before she even took her place at the table she was stolen away by ONC. But obviously we want to engage NIH on this. I mean Mary Jo is still the NIH liaison, it’s just that she’s kind of on hold until she completes this assignment. But you could probably help us if we wanted to pursue this, even to have someone come and talk on a conference call or whatever, you could probably help us, Mark, identify who that might be.

DR. STEINWACHS: As far as I can tell, Mark is spending full-time chairing an advisory committee somewhere in this area.

DR. CAIN: I was just going to say it might be useful to have the program officer from NIH come and describe the program.

DR. STEINWACHS: Because the starting point could be just as you said, and maybe even for the Full Committee to hear more about what they see the CTSA as doing and how it builds the population part of the research and translation equation.

Okay, Bill, tell me all the things I haven’t done and need to do?

DR. WILLIAM SCANLON: Oh, no. I think you’ve done an excellent summary.

I guess I would just say, Larry, you’ve expanded the scope of what we might be thinking about greatly, which is this is the direction I’d like to go in, but I also would say it’s still in the realm of the whats, and I would very much care about the how.

I would like to be in a position where we could make a recommendation that the Secretary turns around and implements, and that’s going to involve a how. Coming from a lot of the other subcommittees, those kinds of recommendations flow all the time. So maybe I’m feeling envious and like us to be competitive.

DR. STEINWACHS: I share your envy, I share your envy.

DR. WILLIAM SCANLON: And thinking about this broader context I think it’s important on what can be a recommendation that’s going to move the ball forward.

DR. STEINWACHS: So in part maybe I guess what you’re saying too is to maybe first look at those gaps and then make a decision about which ones we think we might be able to come up with some hows to, and maybe pick one of them.

MS. GREENBERG: The gaps or the whats, right?

DR. STEINWACHS: The gaps or the whats and the hows, yes. But to make that maybe a stepwise strategy and trying to move quickly to the hows.

DR. HORNBROOK: You’ve seen that picture the ecology of the healthcare system? It starts off with a big box of the whole population and you get down to a little tiny box of the people who are in the academic health center. Bob Blendon(?), yes. We should bring that back to remind us.

Because there’s two things. One is that ecology seems to say that there’s most people out there who are perfectly healthy and don’t need much. At the same time, if you look at all the epidemiology data, and all the health behavior data, the BRFS data and the epidemiology studies, I mean you start adding up those rates and you look at the BMI data this country is sick. You look at the kids in school, I mean every single one of them they’re called they’re healthy, but they’re sick, they’re overweight. Smokers, the depressed people, the asthmatics, the diabetics, we have a lot of sickness in this country.

MS. GREENBERG: On that happy note, let’s go to dinner.

DR. GREEN: On that model 800 people in the United States, all ages per thousand per month, report that they think they might be sick. There are two responses you get all over the country when you tell people that. One is, that can’t possibly be right, nobody’s that sick. The other one is, that can’t possibly be right, it has to be a thousand people.

DR. STEINWACHS: I want to thank you all very much. And with Larry’s help on those few sentences, and Bill and I will try and represent this to the Executive Subcommittee. And Marjorie will be there and maybe Jim to hold our feet to the fire and say well that wasn’t what we heard from these guys. I think the description I also found very useful that Blackford was talking about and Bill, is the healthcare system is under transformation currently. Maybe not directed transformation the way we want it, but it is under transformation. So at the level of measuring it in terms of our capacity and health statistics it’s both a change process that we need to measure as well as the hope that there can be policy and so on that changes in the ways that are positive and not what some of the scenarios are that are highly negative and damaging.

MR. JAMES SCANLON: One quick question in terms of the latter part of that measuring health system change. What about is there any interest, let me put it that way, and not so much the health system side of it, but the health insurance, the cost, the insurance coverage, and the access part of it. It’s a somewhat different route to go, and that’s probably where reform will focus, a big part of reform will focus, whatever it is, so maybe they’re different projects. Maybe one’s populations. One’s cost the insurance coverage and access and health status probably, and the other is health systems and maybe.

DR. STEINWACHS: Well, yes. And so we ought to try and figure that out. Some system changes are going to change access to make it better or worse in light of whatever the insurance coverage is.

Thank goodness we have new members with a lot of energy.

(Whereupon, the Subcommittee adjourned)