[This Transcript is Unedited]




May 21, 2008

Renaissance Washington Hotel
999 9th Street, NW
Washington, D.C.

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030

P R O C E E D I N G S (4:30 p.m.)

DR. STEINWACHS: Why don’t we first go around and do introductions. We have some new members. Blackford, joined us, as there are members of the Populations Subcommittee who generally don’t attend the full hearings and our staff.

I’m Don Steinwachs. I’m at Johns Hopkins. Whenever there has been a Johns Hopkins University member of the main committee, which Barbara Starfield was one for a long time and others, they always gravitate to the Populations Subcommittee. I don’t know why this is – probably programs. Let me go around, Larry you want to start?

DR. GREEN: I’m Larry Green from the University of Colorado.

MR. STUERLE: I’m Gene Stuerle. I actually just accepted a job as Vice President of the Petersen Foundation.

PARTICIPANT: Oh really? Congratulations.


MS. GREENBERG: Is that in Washington?

PARTICIPANT: Is that an international economics –

DR. STEUERLE: No, you’re thinking of the Petersen Institute. It is complicated. This is a fiscal but health issue related foundation. It is located in New York which complicates my life.

DR. STEINWACHS: Gene is just going off the committee. It has been great having you here. Gene and Nancy are the ones who led us into the linkages area, and I thought we produced a very good letter, and we made a commitment. We need to talk about our future plans to go back and revisit periodically and we were talking about either the end of this year or early next year, and get an update on how progress is being made in the department and across the government in linking data that can support the advancement of the understanding of health and health policy.

MS. GREENBERG: I’m Marjorie Greenberg. I’m at the National Center for Health Statistics, CDC, and the Executive Secretary to the Committee. I always gravitate for obvious reasons to Populations as well.

MS. GRANTHON: Welcome to the new members. My name is Miryam Granthon. I am in the Office of Minority Health, Division of Data and Policy, and staff to the Populations Subcommittee.

MS. FARQUHAR: Marybeth Farquhar from the Agency for Health Care Research and Quality. I’m the lead staff for the Quality Workgroup.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC, committee staff. Welcome.

DR. MIDDLETON: I’m Blackford Middleton, new member. Sampling the various committees. I’m from Boston, Partners Health Care in Brighams and Womens Hospital, Harvard Medical School.

DR. STEINWACHS: We heard that you and Justine were going to tag team us as the Boston group or something.

DR. HEFERNON: Henry Hefernon, NIH Clinical Center.

MS. FRANKLIN: Angela Franklin, I’m just public. American College of Emergency Physicians.

MS. KANAAN: Susan Kanaan, writer for the Committee.

MS. JONES: Katherine Jones, National Center for Health Statistics, CDC.

MS. JAMISON: Missy Jamison, National Center for Health Statistics. In a past life I was an epidemiologist in a cancer division in Atlanta.

DR. BREEN: Nancy Breen, I am from the National Cancer Institute. We have Division of Cancer Control in Population Sciences.

DR. BOENNING: Doug Boenning. I am a medical Officer at ASPI and an emergency medical physician.

DR. STEINWACHS: I can see this linkage here that is happening down at the end of the table. Doug staffed our effort to look at surgeon preparedness.

MR. LAND: Garland Land at the National Association for Public Health Statistics and Information Systems.

DR. SONDIK: Ed Sondik, National Center for Health Statistics and we are interested in populations on occasion.

DR. STEINWACHS: Thank goodness.

DR. CARR: Justine Carr, Beth Israel Deaconess Medical Center, Populations visitor.

DR. STEINWACHS: For those of you who weren’t in the main meeting, there was the announcement today about the reconfiguration of committees. The Quality Workgroup which used to be in structure under the Populations Subcommittee is moving out and becoming the Quality and Data Group. Only Justine can fully explain this. We want to keep a close interaction here. I’m hoping that Justine will still let me be on the now new Quality and Data Group and I’m hoping that she will show up here.

The other is that the committee structure is going to have co chairs for each committee which I think is a great idea. In theory, that means you can share the work that tests your ability to try and get the other person could do the work. We’ll see how I do? Bill Scanlon will be the co chair, and Bill apologized had to miss this meeting and be away, but will be here when we meet next time in September.

MS. JACKSON: And Bill Scanlon was also the liaison to the Board of Scientific Counselors and is very involved.

DR. STEINWACHS: I keep wondering when Bill will feel he needs to give up something and hand it off to someone else, but so far Bill has been really wonderful about it all.

MS. GREENBERG: Particularly since CDC has never figured out how to pay him I don’t think, for one day of his service. That is not quite true – whenever he says he will do something more I just say the main is a saint.

DR. STUERLE: This probably isn’t something that deserves a full subcommittee discussion but you might want to take it back to your Executive Board. I think the term Population Subcommittee is a misleading term. It doesn’t convey all that is here. You don’t know what it means. One time I thought populations statistics, then you have quality and data and I don’t know how you– I would work on it. I would not try and resolve it here.

MS. GREENBERG: The good thing is none of this is in charters or anything.

DR. STEUERLE: The one comment I did not get to make at the meeting but I’d really wanted to back up what Mark was saying. I think there have been some very significant efforts to fundamentally take the health care system and repot it. They may totally fail, but a lot of it is going to have implications. Every candidate has got electronic health records in their campaign. The director of CBO, he just put out a statement on a lot of this attempt to try to figure out how to improve the cost part of the structure by getting at quality issues. Like compare Minnesota to Florida – adopt the structure to pay Florida less than Minnesota. It is one thing to do it in a study but it is another thing when you actually have to measure the quality. There is a huge agenda coming along in the very near term.

The minor issue it is important to define for the Secretary and the President, what this committee can do for them as they engage some of those issues.

PARTICIPANT: There is a movement to focus on health – improving health as well as the financial side. Maybe this committee could be Population Health?

DR. STEINWACHS: Getting to sound better.

MS. GREENBERG: That is what it is, really.

DR. BREEN: Does that sound better to you, Gene?

DR. STEUERLE: Sure. I wasn’t trying to resolve it here.

MS. GREENBERG: Actually in the report, Miryam just pointed out that in the report that just came out, the 2005-2006 report which we also refer to as the annual report, it actually says population health.

DR. STEINWACHS: Susan knew.

MS. KANAAN: I organized it by topic rather than by the names of the subcommittees but it does prove the point.

DR. BREEN: Well, we have been renamed. That is cool.

DR. STEINWACH: We have to clear it through the rest of the structure here. The only other update, I think most of you have heard about it, we had a day and half of hearings on the medical home. They were really fantastic hearings and I want to — Matt Quinn isn’t here but I want to recognize Marybeth because Marybeth found Matt, Marybeth supported Matt in this effort.

PARTICIPANT: Marybeth deferred the work to Matt.

DR. STEINWACHS: I wasn’t going to go that far. Matt working with Larry, myself, and Marjorie, and Debbie, and Cynthia and others who were in that sort of core group really put together an exciting set of hearings. I really give Larry and Matt all the credit. The rest of us played our supporting roles but it was very well done.

It covered from the vision all the way down to the key issues that cut across the ideas of what’s the data model that you need in order to support a medical home. What are the issues of how does HIT fit into a medical home as you think about the rules of the HR’s. To me one of the fascinating things was we had Barbara Starfield there, a former member of the committee, and Barbara made it very clear that the medical home is a vision of state. In those visions, you heard from people – they moved around and are still in a stage where there is flux. Barbara made it very clear that it did not meet all the key criteria for primary care.

When people say that primary care and the weakness in this country in primary care as compared tot other countries, is probably one of the large explainers for differences in longevity and health status and so on. It was interesting to see, and that representative was talking about the CMS demo in the medical home, which is going to be rolling out maybe 2009, but they are working on it, that there they were going to focus on chronic disease in the elderly.

They had a model up there that showed the medical home, the Chronic Disease Model essentially the one that came out of Ed Wagner’s work and so on, and then primary care. They were overlapping but they weren’t totally congruent so —

MS. GREENBERG: And diseased management –

DR. STEINWACHS: Yes. We have an agenda today, I was hoping Garland would talk about Vital Statistics, I think it was both – there were funding issues. Garland did you attend the IOM meeting? I was hoping that -IOM held a meeting and I think Ed, I’m sure there, am I right? That was looking at the status of vital statistics and one of the topics that we had talked about taking up and taking up jointly with the Board of Scientific Advisors of the National Center for Health Statistics.

I was hoping that if we had time, that Larry could sort of lay out for us because Larry puts it in a much clearer context than I do, what are sot of the things that are coming out of the Medical Home Hearings that we ought to pursue. I was hoping Marjorie – I glanced at the materials that we got on the proposal. I haven’t gone through the details, so I decided oops, I am not really prepared – could talk about what we might do, which also fits into the whole committee effort for the 60th Anniversary of NCVHS which is next year, to update the vision for health statistics in the 21st century, which was completed and published five or six years ago by the committee.

It doesn’t have in it anything particularly around electronic health records, some of these issues around what we just talked about; a medical home, primary care, other things that really aren’t exclusively part of it. The updating would be a way to keep this vision alive, as well as to measure progress. There are a series of recommendations about trying to achieve a more advanced health statistic system. Part of that would be also being assessing progress.

Those of you who haven’t seen it or read it, it is accessible through the NCVHS website. I think we’ve run out of printed copies.

MS. GREENBERG: Have we run out of them? What about the policy makers version?

DR. STEINWACHS: If we have any printed copies it would be great to – I had the impression we were just about out of them.

Harry Reynolds is the incoming chair of the committee, wanted us also to consider our future agenda sort of in three categories.

One was visionary. We could think about as we talk about these things, whether those specifics of the visionary. Another was things that are more near term. The third category was follow up. Just as a sort of a moment ago, particularly with the data linkages activity would be one of those follow-ups. There may be other things that we should follow up.

One last update. Doug worked very hard, and I really appreciate it because it wouldn’t happen without him – both the hearings on search capacity measurement and preparedness, and then trying to get a letter out of this group. We had two dedicated people, Bill Scanlon and Kevin Vigilante who was also leaving the committee, and Doug together, three of them, trying to carve what was learned in that that we could transmit as a letter. I think the final assessment, partly because there was not agreement on this was maybe there wasn’t enough and it was getting less timely as time went on, was the other problem to do. We sort of gave up on that but the preparedness area seems to me, is not an area necessarily to give up on. Doug had said that he’d like to stay with us and so we also ought to consider to what extent the things that they are doing fall into that domain and Doug also has other interests too, I know.

DR. SONDIK: Could you run down what the subcommittees are?

DR. STEINWACHS: Okay. The subcommittee and I know and Justine will help me on this, we have Populations or Population Health. We have Standards. We have Privacy and Security and we have Quality and Data. Then the Executive Subcommittee which brings together all the co-chairs of the subcommittees and the chair of the overall committee.

There has been some reshuffling, because it used to be Standards and Security. So Standards is now just Standards. Now there is a Privacy and Security
Committee, which makes a lot of sense. We’re elevating Quality and Data and then Populations and then still with the latitude to have a ad hoc committee that cut across.

Harry was making a point that he felt that the more that we could do that was truly envisioned as cross cutting and so in the discussions on the medical home really topics came in there that cut across all the committees and potentially, depending on how we pursue it would involve other committees or at least their representation.

Any questions, comments about the agenda?

DR. BREEN: At the end of the meeting Harry Reynolds mentioned that usually the subcommittees do different things, and he thought that medical home was a concept that Populations had sort of hosted it. It had a lot of crosscutting things, but even suggested that we all might want to focus more in depth from our own subcommittee perspectives on that. Did that come up again today? Was that something that was reiterated? Do you think that is the direction that committee as a whole as well as the subcommittee may take?

DR. STEINWACHS: It was clearly reiterated and I think a lot of enthusiasm by those who were there, who attended the hearings about medical home and about you know both– when you think about possible system transformations out there, what the country may be trying to address politically and otherwise 2009. It resonated I think in those areas. There was explicit discussion about the idea that you might take something like medical home and break up into pieces and so the Privacy and Security fees might be dealt with by that committee.

We might me carving out the data model and areas around that. Quality and data might actually pursue some of these issues that were raised about how the HR HIT supports that because a lot of that is quality reporting and the ability to measure what you do and feed it back into the practice.

Standards, you know, as you do move that ahead you would then so even the definitional of how you would capture some of this information. A lot of discussion about if you are going to look at primary care then you need to capture why people come in.

We in our system, the only place we ever capture that was in the emergency departments and then it doesn’t get into any data systems many times. It is just something that is there in the book.

DR. BREEN: Plus it is not most of the population.

DR. STEINWACHS: Well we hope it’s not going to be most of the population.

DR. BOENNING: It feels like most of the population lots of times.

DR. BREEN: Well it isn’t though.

DR. STEINWACHS: Garland, you want to lead off on vital statistics?

MR. LAND: I’m just going to give a little bit of a background for those of who aren’t familiar with the system. Data statistics are collected at the state level and then they’re purchased by the National Center for Health Statistics to form a national database.

Over the years, the National Center has been basically funded for the Biostatistics Program and it there hasn’t been sufficient funds to purchase the data. Various strategies have been used to solve that problem, including eliminating some datasets. Initially vital statistics include marriages and divorces and that no longer is the case. Divorce data is no longer collected by National Center – same thing for ITOPs and induced termination of pregnancy – that is no longer collected by the National Center.

The next strategy to maintain within the budget was to cut data items and so certain data items were no longer collected or purchased by the National Center. More recently, the strategy has been to only purchase less than 12 months of data and then rollover to the next fiscal year and pick up the remaining three months of data. You can only do that for so long and then it starts catching up with you. The budget situation hasn’t improved and so it’s continuing to be a problem.

I wasn’t at the Board of Scientific Counselors meeting, but as I understand it their recommendation was to – of course this is not just an issue with vital statistics – it is an issue with all the national surveys of a flat budget and how to handle the escalating costs for each of the surveillance systems – survey systems. As I understand, their recommendation was to not cut every single one a thousand deaths and then you ultimately reduce the power and the quality of everything and to maybe feel like it may be more drastic measures.

Then more recently, just about two or three weeks ago, the National Academy of Sciences held a workshop on vital statistics. Most of the presentations at that meeting were by researchers either university, or government researchers who talked about the importance of vital statistics and how they are using it and espoused the need for good vital statistics system in the nation.

At the end of the session Jennifer Madens basically kind of opened up a can of worms in terms that we have got a problem. We don’t have the money to continue funding the system at the same level or at least the way we have done in the past and there are three alternatives proposed to solve the budgetary problem. One was to maybe collect data every other year and maybe births one year and deaths another year and kind of alternate systems.

Another proposal was to go to a sampling methodology as opposed to 100 percent of births and deaths like is collected now.

A third alternative that was being considered was to collect core date elements and then have enhanced data elements. So if another federal agency wanted to purchase enhanced data they could do so at a substantial reduction in the collection items among births and deaths or maybe even reduction in some parts of the system, for example not collect fetal deaths or not collect linked births and deaths.

As I understand it and Ed can correct me, the last proposal that is being considered now actively is being considered and looked at, is having just core data items and possibly reducing other parts of the system. That’s kind of where things are. Decisions are going to have to be made in terms of what does that mean? What data will be purchased and what data will be not be purchased? What parts of the system will no longer be purchased, and so forth. As I understand it, that has to be done within the next few months because we have enough free time for conflicts. It is not a good situation.

DR. STEINWACHS: Ed, do you want to say some things about this?

DR. SONDIK: What Jennifer outlined are not necessarily the only options. We are under the gun. There is no question about it. Our situation is just tight; it’s sort of beyond tight. In fact my presentation to the Board of Scientific Counselors a month ago now, kind of laid out the deficits that we have and there was one person on the Board who said, it’s just not sustainable. It’s not sustainable so we really have to do something. Their options – they said you don’t want to just continue to cut, you have to do something that will free up some money in a significant way so you can make the programs more viable.

That is fine to say, but that’s very difficult to do. The option that you talked about that is being pursued at this point I view as an interim thing. It’s just expedient at this point. It actually fits with what the Board of Scientific Counselors said not to do, because it is cutting a portion in effect, cutting a portion of the data that is being collected. I view this as kind of expedient path.

She didn’t lay out all the options. I think there was quite a bit of discussion after the meeting of people mingling around and talking to one another. Garland, correct me if you see it differently but I think there was a strong sense of taking a more fundamental look at how this works and how it supported and they used of the word system – and it is a system.

What we do is we purchase the data. Somehow, that just doesn’t jive with me. It just doesn’t fit right. I think one of the things we need to do is to sit down with all the principals, if you will, sit down but I think we need to include not only the immediate vital registrar community in this, but we need to include a wider community. The appropriate level of state officials and the appropriate set of federal officials as well, and maybe to, since the private sector is a huge user of this data, maybe we need some friends in the core, if you will, from the private sector and rethink how it is that we support this.

The meeting was very impressive in terms of what people said about the fundamental nature of the vital statistics. If you didn’t think it was all that important before hand, after that meeting you said, you know you can’t live without it. I think that’s absolutely true.

There is a point that did not come up and correct me if you — This is such a significant program with so many different aspects to it. If you actually look at our program as conducted by NCHS, there are many aspects of this program that you might think would be there but really aren’t there. For example, we don’t have an allied extramural grant program that would be focused on methods that would be focused on any number of things; electronic death registration, various assessments of fundamental quality, any number of things that would focus not solely on use of the data, because there is lots of funding mechanisms for the use although not as many as we would hope.

NIH doesn’t exactly give grants for that study it might be implicit. CDC has hardly any money for that. I think the Federal Government somewhere we need support for that kind of thing. We also need support for a more integrated programs with states so that we have a more intimate relationship and it’s not solely for purchase of the data.

Not to say that we don’t have some of those activities, we certainly do, but or a program of this importance, it really isn’t there. In order to put this in the footing that I think it ought to be we would be talking about a significant increase in resources and perhaps in the way our organization within NCHS and with the states, in how we approach this.

I think the sense that I certainly had at the end of that meeting was that in addition to pursuing this near term thing which is more of a contractual thing of in order to be able to keep this thin moving we need to do something that is more fundamental than that. Clearly, this committee would have a great deal to say about the future of the vital statistics, vital registration, and all of the aspects I mentioned.

DR. STEINWACH: We are not going to be able probably to pursue the conversation a long way today but one of the ideas on the table had been to undertake a joint activity with the Board of Scientific Advisors looking at some specific the issues in the content of vital statistics.

Garland, maybe what we ought to do is maybe get a telephone call within the next couple of weeks or a month, involve Bill Scanlon, Ed, and might identify who else on that Board of Scientific Advisors and have a discussion about are there some specific issues here and the timing also.

The last time I think we discussed this was months back it wasn’t clear that the timing was good for the Board. I think to contribute to it we need to look at the where is the specific area we could contribute to.

DR. SONDIK: Time is of the essence.

DR. STEINWACH: Do you have some suggestions? I was just going to ask – there is a potential here for us to help you evaluate strategies. I was sort of looking for whether there were some specific areas in here that what this committee could do in conjunction with the Board of Scientific Advisors might provide information that will be helpful. Private sector, other thins that we could involve that–

DR. SONDIK: Actually, I see both committees in forming a process that we would put together to take a look at options how this can be organized and configured and supported in the future. It may be that where sort of the wisdom of these groups comes in may be that perhaps the best way to do this would be to do it under the two committees jointly or since sometimes that has more power if you will, than it happening internally I think actually a joint effort as far as I am concerned, would be good.

The ideal here might have been to have a study by the IOM or the National Academy of Sciences. A study takes quite a bit of time, it’s expensive, and it takes a great deal of time. I’m sure we are going to get a very good report from this ad hoc.

DR.STEINWACH: That builds the case for why we need to sustain the effort.

DR. SONDIK: I would see that at a minimum there would be three organizations involved. These two advisory committees, our Board of Scientific Counselors, this committee, and the Committee on National Statistics I think is a minimum in terms of the outside. It might even be that the IOM would want to weigh in on this as well.

I think that I is something that we really –Garland is at the point, really, as far as the community goes and we need to get ourselves together as to the direction that we want to take.

DR. LAND: It seems that we’ve got a long term issue and then we have a more immediate short term. It is this one alternative is going to be pursued for us next year. Do you think it would be useful to engage with in terms of the short term of how often the data is going to be collected or do you see that more of a management issue?

DR. SONDIK: I certainly think in the sense it is a management issues but I think we need the guidance. I don’t think there’s any question about that. I could see doing an ad hoc basis, but I would very much value what we are getting from these groups.

DR. STEINWACH: Other comments?

DR. CARR: When you said time is of the essence, what is the timeline? Is there a need to get some kind of introductory letter weighing in on it, followed up with more detail.

DR. SONDIK: I think when the alternatives are clear, then I think a letter weighing in on it would be good. What I mean by time is of the essence is that every year that goes by we just get deeper into a hole. We’re not working. There are a number of ways that we could fix this sort of immediate fiscal problem. None of them are good but they could happen.

I mean we could pull something out of the field and we could get some special appropriation which is aimed solely at sort of what the deficit is, which would be terrific but it’s a band aid. It would not address I think what the more fundamental question about how we support this piece of health information infrastructure.

I am on a soap box in saying this. There is this growing sense that America is not the healthiest nation in the world. We’ve got to be doing more to improve the health level in the United States. Two principal measurers of that are longevity and infant mortality. Here they are. This is why I say time is of the essence here.

We’ve been with this problem for a long time. We have to take advantage of the Academy meeting and the situation that we are in now to most purposefully say that we want a solution to this. It may involve more federal agencies involved in this.

MS. FARQUHAR: Timely – I may be naïve and my brain is fried after about three hours of conference calls today. One issue that has been constantly coming up at AHRQ anyway is that we don’t have, and I don’t know that we don’t have HHS overall data strategy which has been coming up a lot down in the Secretary’s office I understand from AHRQ point of view. CMS was involved in some of those discussions. Maybe this could play into some of that.

My second comment would be, is there a way we could leverage some of the federal data basis that could potentially feed into what you all need with regard to the data elements that we are already collecting?

DR. SONDIK: Not for this. On the second point, not for this but on the other point that is one of the reasons why the vision is important but the strategy is also very important. We don’t have one at least that I know of and would know of, a framework that you can really understand and puts things in perspective.

There is one aspect of that that does exist and that is in Healthy People. Healthy People does outline very clearly a set of data elements.

It’s objectives and then there’s data, specific data items associated with that. You can kind of view that as something of a target if you will, but how to get it, the strategic notion doesn’t exist. That really is left up to the department on a very distributed basis to do that. NCHS takes it very seriously, and we supply significant fraction of those elements. Fifty percent, whatever AHRQ supplies and I don’t know what percentage but in terms of the strategy I don’t think we have that.

MR. GARLAND: Just to kind of address this issue, there is an expectation that the states will have a contract January 1. Whatever is done has to be figured out between the next six months.

DR. STEINWACHS: So the contract has to be finalized before January 1?

DR. BREEN: When the contracts get finalized don’t they have to get finalized before the end of the fiscal year?

MR. LAND: I don’t think so. I’m always confused by purchasing in the federal government.

DR. STEINWACH: Why don’t we have one or two additional comments. What I thought is those who are interested in this, and Garland certainly very much is and I am, and others who are interested, we could get a conference call going and talk with you Ed, more and others about what’s the timing, what should we do? Part of this I think you are saying is you are reacting to an advising on strategy and that’s getting clearer on your end in the Center.

Part of it also as Marybeth’s suggestion is thinking about what’s the overall strategy and how could we contribute to that so the centrality of vital statistics was clearer. Also, there are areas which need to be improved and so it’s not just a matter of continuing the same machine. Marjorie do you have any–

MS. GREENBERG: I was just thinking Marybeth bringing up the overall departmental data strategy kind of tied in with something else I was thinking of. Ed, you mentioned, well we didn’t have the Board then, the different groups – when we did the 21st Century Vision For Healthy Statistics about eight to ten years ago, the partners were the Committee on National Statistics. They launched it with a workshop and we commissioned papers for that and that then contributed to the other phases.

We found it very challenging – well, it was a National Committee. We didn’t have a Board of Scientific Counselors then. I think actually maybe that the justification for the need for the Board may have partly come out of that whole work. Then, it was the Data Council, the HHS Data Council, that ties in with what you are saying. Obviously, I mean, either the HHS Data Council should have an important role in coming up with an overall HHS data strategy or they should get rid of the Data Council. It wouldn’t make sense to do that without the Data Council, but the Data Council doesn’t do that now, it addresses particular data issues and it gets all the recommendations from the National Committee and everything. It really hasn’t had the capacity to charge to do an overall data strategy.

I think that this all does relate to potentially what, if we wanted to update this Vision For Health Statistics in the 21st Century what would be the most useful way to do it, because I already have had a few emails exchanged with Ed where he say that he doesn’t want some pie in the sky think and they have said that at the National and at the Board and others have said it too, what they want is something that could lead to actionable and maybe decisions.

DR. STEINWACH: I think what you are saying is an updating could be both a progress report but it could expand on one or two areas?

MS. GREENBERG: It could focus on vital statistics.

DR. STEINWACH: You don’t have to restate the whole vision.

MS. GREENBERG: No. The vision and some of the conceptual models are sound but how can you make this work? I think we should think of these kind of together is what I’m suggesting.

DR. STEINWACH: Gene, were you going to say something?

DR. STUERLE: Just very quickly. I have been in this place so many times in different areas of government statistics from IRS to Census to you name it, and the same issue comes up over and over again. I think there are two things that really can help, may not help in the very short run, but I think will help a lot in the longer run. One is I think it is extremely important to be able to point to real world consequences for people if something isn’t done. The notion that we want this because we are researchers and we believe in research does not sell as much as those of us who believe in research believe in that. To be fair about it from the other side is that if I’m sitting at OMB and I’m the budget officer and there is no real plan in HHS to decide what is important – it comes across as advocacy for anything. The statistical community often comes across from a budget perspective as advocating more money — – this one comes across as saying, you know what – we think we could really cut out X and help with Y. So in a sense you want to coral the budget officers to have some mechanisms to be willing to say, hey we think these vital health statistics are more important or even to rank things. That’s an issue of whether there is a cutback or an increase.

It’s the same issue as how do you really decide, you know, really force yourself to decide what’s most important.

I don’t know what happens internally at HHS, but I’ve seen this debate over and over again and it is not well formulated.

From the other side, there is a perspective, you know, you want research and then you have to decide which research is most important -— then let’s just do– it might be across the board cuts, it might be across the board increases, but there really needs to be some thought about how some mechanisms if somebody says, I’m willing to say, this is more important than that in the process.

In selling it is also – as I said, the first point is probably even more important because you have to sell the real world consequences for not doing it.

DR. SONDIK: I think the workshop can be very helpful in that.

MS. GREENBERG: It wasn’t just researchers – it was census saying we need denominators.

DR. STEUERLE: It forces the people you have talking to come to you to really give you the information specified the way you need it.

PARTICIPANT: Census related issues, implementation of policy, a variety of formulas that simply couldn’t operate without having this information. That’s why some of these options like well, we will get it every few years? This is — it’s not feasible, or to do a sample.

DR. GREENBERG: I can’t go to any international meeting and say the U.S. has decided to only collect mortality data after every two years.

DR. STEINWACHS: We have too big a population like China. Nancy, you are next.

DR. BREEN: Well, it actually builds on what Gene was saying and of course we are all are very concerned that our vital statistics system is crumbling. I think that goes without saying.

In terms of pointing to real world consequences, I was thinking about that too because Census uses these data, the Social Security Administration uses these data, CMS uses these data, NCI uses these data for cancer mortality data.

I think all of NIH uses these data and that each of those – and then the private sector, you mentioned that the private sector relies heavily on these data as well.

They may actually have some money. I think that all of these places were notified what the implications are going to be for the things that the are particularly interested in that would be of great use.

Even the press, I mean, Ed, none of us are allowed to talk to the press or criticize the President’s budget because we work for the President.

Those are all options in terms of communicating this information because people who get Medicare, people who got social security.

This is going to trickle down to individuals and that message is very important and is not something that they are going to get until after the fact.

In a way it is not fair for us to let them get that information after the fact. They really ought to be warned about it in advance, so that they can let people who can make change do that so that it doesn’t happen.

DR. STEINWACHS: One of the things that potentially could be done is if there were a rational set of hearings that could include bringing in the private sector to talk about one or two or three options, as a way to try and flesh out more clearly, what are the consequences of going to something other than the system.

There is still doesn’t broad the vision that we want which sort of says what is really the enriched kind of vital statistics that we will need in the future.

Why don’t we try and whoever is interested in this, we’ll bring everything back to the whole committee anyway, but would like to be part of a conference call involving Ed and some others let’s talk about the timing and what could be done so I think it has to be coordinated with the two other groups you talked about.

Marjorie, you are looking at me in a worried way.

DR. GREENBERG: No, there was one thing I had wanted to say and that is we did find as a National Committee that it was extremely challenging trying to work with the committee on national statistics. They don’t play well with because of their mechanisms because of their processes; they don’t play that well with other groups. —

DR. BREEN: Who are they exactly?

DR. GREENBERG: They are part of the National Academy of Sciences.

DR. BREEN: Okay.

DR. GREENBERG: They are off national statistics, this is obviously health statistics, but they have the original processes and they might have an open workshop or something. That would be my one concern.

Those having this workshop is great but they have it and hopefully they’ll get something out of it, something will come out of it relatively soon but–

DR. STEINWACHS: One way would be maybe to have someway to have a couple of members whoever Chairs that committee and so on, have a more limited group have a conversation about this because we don’t need to necessarily march with them in this. They are contributing to this by virtue of the workshop and so on.

DR. GREENBERG: Do you think we should try to include the woman who was the former member of the BSC who Chaired?

She Chaired this workshop. She is a bio-technician I guess. She was on the Board. We could include her I suppose, on the call.

DR. SONDIK: I think actually, there are a number of members of the committee that have various significant interests in this.

DR. GREENBERG: Committee of National Statistics?

DR. SONDIK: Right and I think including them as individuals would be fine. The National Academy moves slowly.

DR. GREENBERG: Yes they do. I would think we can’t react to -– the National Committee can’t react to these options until Ed brings them forward.

From the point of view of how are we going, can we launch some kind of process for this longer term transformation or fundamental review and reform or whatever of the system and bringing in all these different stakeholders? I think we should have some kind of plan by the September meeting.

DR. SONDIK: As Garland point out – just to summarize that, we have got a near term set of things that we need to do and a longer term and we don’t want the near term to drive the longer term. Preclude certain options that might be for the longer term or whatever.

I would very much like, speaking for the Center, to have advice from you all about both sides of this near term.

As we move along, during the summer, we should continue keeping you all informed as to what it is we are doing and how we are doing it.

MS. GREENBERG: We need this is a Federal Advisory Committee obviously, we need to do this in sunshine as much as possible, but recognizing-—

DR. STEINWACHS: Do you control the weather these days Marjorie? You control everything else.

MS. GREENBERG: If I could just ask you Ed, I know people are saying you two work in the same agency but we are always at different meetings but since you are here it is great.

Do you see this longer term – does it resonate with you to try to link it with the 21st Century Vision For Health Statistics? Do you see that they could be linked?

We are not going to do the 21st century update unless NCHS is in favor of it in any event.

DR. SONDIK: I see that as more visionary. I like it to be as specific as it can be. I think this is quite separable from the other things that NCHS does in terms of the surveys and it’s fundamental.

I think we should take it on in that sense. I would think that any sort of vision or whatever would fit, would need to fit, and should fit however it is we’re, as a country, addressing the vital statistics system as Garland put it, and it is a system, state based.

DR. STEINWACHS: Why don’t we do this – we now have a sense of next steps here. Since we’ve raised the 21st Century, why don’t we switch order a little bit if that’s okay with Larry.

Why don’t you brief the committee Marjorie, on where we stand in this, so all of you know is that we are sort of the point group but this is really consideration for the whole committee because the idea is to be part of the 60th anniversary celebration, to come forward with potentially an updated update on the vision, and the piece could feed very much directly into the discussion we just had.

MS. GREENBERG: I’ll be brief but just for Blackford’s benefit, the committee is coming up on its 60th anniversary. The discussion is when is it really? I think really, it is 2009, a committee, I believe from all my intelligence is that it started in 1949 out of a recommendation of–

DR. STEINWACHS: Lowell Reed was the first chair who was from Hopkins.

DR.GREENBERG: Yes, and we say that he was the chair from 1949 to 1956 or something like that.

DR. STEINWACHS: You want me to consult the Hopkins archives?


DR. GREENBERG: You might want to. Yes. He was 1949 to 1956. I think he is the only one who can compete with Simon, in the length of his tenure as the Chair of the committee.

For the fiftieth, which we observed in June 2000, we had two interim reports that we-– it was celebration and we brought in former Chairs and everything– but we had two interim reports.

One was the interim report was the Vision for the National Health Information Infrastructure and we know how that has kind of played out and influenced quite a lot, including the establishment of ONC et cetera.

The other interim report was on the vision for the 21st Century For Health Statistics, which was led by Dan Freedman who was the Director for Vital Statistics, Vital Records, but also the State’s Center for Health Statistics in Massachusetts.

We have not always, but tried to have a member of the committee who is from that community because they are so important to our work obviously.

We had those two interim reports and they were rolled out as final reports. The processes were very elaborate. We had hearings, we had workshops, we had consultations, we did regional stuff, we went to states, it was quite extensive.

DR. STEINWACHS: Did you go to Hawaii?

DR. GREENBERG: We did not. Don’t hold your breath but we finally did get out California. As far west as we did was California.

I think we put out a very good report. Barbara Starfield was also very involved with that. It included a major conceptualization on the influences on health which are much more close than health care.

It linked in with the NHII Report, in that initially when Dan started talking about the NHII vision, it was primarily the healthcare vision. We put into that as one of three equal sectors or circles, population.

We could never really decide which was bigger. Was it the 21st century vision, or was it the NHII?

The population component of the NHII, which is not the same as the NHIN. It’s a bigger vision of a whole infrastructure, not just this network that we discussed in today’s meeting – though they have a lot in common.

The 21st Century Vision was part of that or related to that population component of the NHII. It’s actually in the 2005, 2006 report. We introduce that here on page six.

There were a number of recommendations related to this and another conceptual model but also related to the fact that we really don’t have of course, we’ve already agreed we don’t have a healthcare system, and we also don’t really have a health statistics system and I think this is obvious from the discussion that has been going on. We have pieces of the health statistics system.

There also was the concern at that time that we didn’t really even have any literature on health statistics. I know we did on statistics and how to do health statistics. There was a growing literature on this epidemiology, on surveillance. There really wasn’t any on statistics.

Out of it came an edited volume that Oxford University Press put out on health statistics, which we don’t know that much about how it is being used. It could be used in classrooms and all over. I personally worked on a chapter on standards and the relationship to health statistics. It was quite an impressive effort.

The recommendations, particularly those related to how to try to create a more coordinated and integrated system for health statistics, which – we never picked up on.

Some of them appeared to be dead on arrival, others maybe just had implications. They certainly had federal state implications. They had financial implications, they had a number of implications. I would say, unlike the NHII report, those recommendations didn’t get a lot of traction.

DR. STEINWACHS: Marjorie, do you see as one of the opportunities as Gene was making the point, trying to prioritize. In looking back, it is not only looking at those in progress but maybe trying to identify those which are more important for the future.

MS. GREENBERG: Exactly. One of the things –over the years since Dan went off the committee, I’ve had discussion with him about looking at this, updating it, saying even from this thing on number six.

Where are we collecting data? Well we know where we are mostly collecting data and where we are mostly not collecting data to some degree but really drilling down into even this and saying, what do we have? What do we really know about economic resources? What do we know about the natural environment? Which is important to population health? What do we know about life style and all of the above?

In anticipation of the 60th anniversary, we were thinking we might want to revisit both of these reports or at least the populations component of the NHII report and the 21st Century Vision for Health Statistics.

As Don said, one of the things is that, when it was finalized, really, the whole health IT agenda, was just getting started. It really wasn’t taken into account that much.

We’ve been communicating with Dan about that possibility. He has come back with just a proposal just sort of something to think about.

That was part of the celebration of the 60th anniversary accessed progress on the recommendations laid out in the vision, an update reconsider and revise the vision in light of national and international developments since this publication in 2002.

It would involve some internal work of just going through, looking at it, updating it, collecting information, and et cetera. At least one hearing, and maybe some additional interviews, et cetera.

In discussion to the Executive Subcommittee, we’ve gotten– actually I think the best defense of doing this, and I quoted you Don — came from Don, because he was not able to be on the last Executive Subcommittee teleconference – after the Board of Scientific Counselors meeting — the last one, I was so discouraged or despondent about the fiscal situation of my beloved National Center of Health Statistics that I thought maybe this is too visionary. Why are we doing this when the ship is potentially sinking. I hope it isn’t, and it would be criminal, I’d have to say if it were.

Don said, I thought quite well, and I can probably find it in my Blackberry, but that indeed it’s at a time of crisis that you need to be thinking broadly and –

DR. STEINWACHS: You need a vision if you are going to get out of the hole otherwise people just let you fall into the hole. PARTI

MS. GREENBERG: I think the short term, longer term discussion we’ve been having supports that.

We heard from Michael Grady, at the Board of Scientific Counselors, you know, who would be the audience for this vision? It might be too abstract if you just updated the vision. Jim Scanlon had said, and now Marc Rothstein has said, Eugene has thirded it, that we’re going through so many transition, this might not be the time to launch anything new.

Although this is not really– it’s looking at something we’ve already done. It’s not completely new.

There are pros and cons. When I talked to Dan about this, and give Parish(?) both of them are willing – they are both retired, but they’re willing and interested to work on it but obviously we would have to do it under contract with them. At that time, I did not realize that we’d have a one-third cut on our contract funds from ASPE to support the committee.

It’s possible– we usually get $300,000 a year, and we’ve got $200,000 this year. That was really lucky to get that in light of a lot of things being cut, including other support of NCHS, research and stuff, that ASPE has supported in the past.

We might still get some more money. I thought we had more money than we did. I’m not trying to kill this idea by presenting it, but I’m trying to be really realistic about it too.

I have not gotten back to Dan. It’s been a few months since he sent this to me. He knew that we needed to discuss it and vet it, et cetera.

At the last conference call of the Executive Subcommittee, Jim said, agreed that there was something to be said for revisting it, but he said it did not have to be done in conjunction with the 60th. It could be separate.

We’ve got a lot of different balls in play. We do want something I think, in addition to just celebrating the event. I think we do want some one or more projects to be working on to roll out.

I would say that my current thinking is that although the committee was formed in 1949, I’m thinking that we would aim for this 60th anniversary celebration to be June 2010. That would be ten years after the 50th. I just can’t see doing it in 2009, when we would have just gotten a new administration, a new Secretary. We’d have to really be working on it right now.

We just have a new member, a new Chair. It seems unrealistic to do it in certainly June 2009, even September. We could do something more substantial – we would have more time to plan it if it were June 2010. This is what I’m basically going to present tomorrow.

DR. SONDIK: There could be a lot of transition activity within the new administration.

We don’t really know what’s going to be called for. ASPE for example, may say we need to better understand the role of this committee and how it’s going to fit in to the challenges. What are those challenges?

A great deal of work that could come up and more than likely will.

MS. GREENBERG: You would agree that we should look to 2010? I think we have to do something by 2010 or do nothing. I don’t see– particularly since we did the 50th at 2000, it seems to me it is fine to do it in 2010.

DR. BREEN: It might depend on whether we want to be proactive or reactive with the new administration. If something is sitting there that they can pick up on then Gene, do you have a sense? You just came out of the political campaign world and maybe you have a sense —

DR. STEUERLE: I wasn’t in the political campaign at all.

DR. BREEN: Oh, I thought I heard you on the radio.

DR. STEURLE: It was probably Gene Sperling. The names are constantly conflicted.

DR. BREEN: Oh, I thought it was you. It does strike me that you would think a new administration would be coming in looking for stuff and of course once the new administration’s in place, then they’ll be lots of things to do. I know at NCI, we try to be responsive in a way that it is going to help the new administration bring information in.

It seems to me that this population health document is pretty solid, and fairly visionary for its time, but since it doesn’t include health information technology, that really does date it pretty badly.

If that the main thing that is going to be done, it doesn’t seem like that is such a huge job. I’d be happy to work with you on a market requisition which would be very precise and we could run it by the Committee in terms of what we would want them to do for a reasonable amount of money. We’d have to be careful about that.

MS. GREENBERG: I would agree with Jim that we shouldn’t totally link these in the sense that we would want to get started working on it, and we might have an interim update.

Just like I think we thought we were going to do those two reports and have them ready for the 50th anniversary, then we realized that that was overly ambitious so we had interim reports, which made it even better in a sense, because we got input. Then we had final reports a year or two later.

DR. STEINWACHS: I think we would probably need a committee conference call to try and settle the next steps. Nancy, I really welcome your involvement.

I think there needs to be a specific plan, or maybe a couple of options or something laid out. The timing is the other element that you’re talking about.

MS. GREENBERG: I think the Executive Subcommittee was asked in the February meeting to come up with some — and I’m proposing an Executive Subcommittee retreat this summer.

DR. STEINWACHS: We ought to do whatever we’re going to do before that retreat.

MS. GREENBERG: –last two weeks in July.

DR. STEINWACHS: Let’s go to the medical home. I hope we can stay under 15 minutes.

DR. GREEN: I will be really brief.

DR. STEINWACHS: You always pull it together so nicely, Larry.

DR. GREEN: Let’s make a shot at that. I want to echo Don’s thanks particularly to Marybeth and Matt. We just can’t overstate how effective Matt was in –

DR. STEINWACHS: Tell Matt he has gotten a committee hug.


DR. GREEN: Don, I haven’t been around when someone has thanked you directly. As Chairman of the committee, you are providing the leadership and creating the space in which this could happen. I want to thank you for that. It was very, very nicely done.

I will be very brief here. I want to go to 30,000 feet. I want to come back down to about 15,000 feet. I will drop down to about a mile high – that is where I live most of the time in a state of chronic hypoxia and then I want to drive right down to sea level all related to these medical home hearings.

The 30,000 foot level that I’d offer for your consideration is that while change is constant it’s rate in size is not. I believe we tapped into something in this hearing- it surprised me, I think it may have surprised everyone, of its size and scope.

The clinic, the way we doctors practice medicine was largely invented in the 1830’s in France and it has changed remarkably little since then, but for all the world it appears that it is now undergoing a transformative change that is largely grounded in the fact that now what medicine does matters. So much of what medicine does now actually works and it is a real problem if you need it and you miss out on it. It’s also a real problem if you get it and you don’t need it because everything that works has adverse effects.

There’s a redesign underway and we capped into something in this hearing about that re-design that turned out to be really robust.

To bring this down, what the term medical home turned out to be from the view point of these hearings is it is a metaphor for an emerging system of care that’s designing to close performance gaps.

These are gaps for the whole population and. particularly, to assure primary care and chronic disease management for everybody. That’s my sort of summary take about what we figured out about what the hell are we talking about. It sure as heck wasn’t an agreed definition.

The metaphor was united and inspiring. It’s nothing less than a transformative change in frontline clinical care clinical care that depends on information technology, and organizing principles, and re-engineered processes, that frankly don’t exist yet and people said it over and over again. They are part way there – they are getting underway. But the hearing confirmed, I just think it’s indisputable, the hearing confirmed that this change has been joined in the United States.

One objective piece of proof is that when the American College of Physicians, The American Academy of Pediatricians, The American Osteopathic Association, The American Academy of Family Physicians, can agree that every word on two pages, about joint principles about the medical home something is going on.

This just doesn’t happen in real life. This is stunning, that that level of concurrence, and agreement, could happen, and that they could get in a room and agree about it.

There’s this remarkable convergence in the provider world that we saw during the hearings.

I’ll drop this down to about the 5,000 feet level to where I live. There are some pretty urgent needs to measure the features and functions of this thing.

It’s an iterative back and forth sort of process. It is hard to measure when you don’t have it well defined but it is also pretty hard to define it without some measures. We saw this bouncing back and forth in different presentations all the time.

To drop this right down to sea level, we heard from MEPS about some elements that are being collected in this $52 million a year survey, that could be very informative about this medical home idea.

We’ve got some really cool specific data items out of the survey about the special needs of children. We also saw particularly in the provider intake survey for NAMSIS Some real opportunities to monitor and track the development and elaboration of some of these features where you could determine whether or not it is happening, and was there any change, and if so, what was the direction of the change?

We got to that level of discourse in the hearing which is pretty amazing. Then we saw from NCQA what I would call a starter step, that is actually interpretable in a way that’s understandable in the provider community at two or three levels of performance that they’re ready to roll out.

I went to sleep then and I woke up this morning and started flipping back through pages and notes that I took and started trying to connect this up with things like the CHASM – ten years of IOM work about quality and a lack thereof.

I’m not going to bore you with this, but I could just out of my own experience and mind, write down 27 problems that are well documented and publicized in the country, that we heard people address in this hearing. By virtue of attempting to design this sucker right, as a point of integration and accountability, and a redesigned healthcare system.

I was a little confused last night. When it was over, I was like, what the hell happened?


This was much richer than I anticipated. I said to Marjorie, I think we got a lot more than we deserved out of this. So something substantial is going on here and it seems to have a lot of promise.

Marjorie said moments ago as we adjourning the committee, and like Harry said near the end of the hearings, this is a big enough set of issues that it could provide a unifying focus that could help us organize our work. Not that it’s – I want to avoid overstating it’s importance in and of its intrinsic self.

But for those of you who understand complexity science better than I do, the medical home metaphor looks to me like it worked like a strange attractor from the point of view of the complexity science.

It was amazing what started organizing itself and lining up on it that created a set of patterns that made sense. It looked like they had promise. That if they were explored and developed a little more.

I’ve been debating all day long, whether to just point blank express one members opinion about this but I think the medical home metaphor idea should stay on our agenda. For the Populations Subcommittee, and the Quality Work and the Data Standards, there’s work to do around this thing. To be highly functional, applicable, make a difference for people, and would not be the usual way of doing things.

I’m pretty surprised and pleased by it and would like to encourage everyone to decide we need to do with this.

MS. GREENBERG: For those of you — thank you, that was beautifully done. For those of you who did not have the pleasure of being there, we did bring in Susan. We kind of thought that we would get some good, rich stuff out of it so we brought in Susan for the subcommittee meeting, as well as the full(?) meeting, and so we will be writing it up in a way that hopefully will be thematic and we also have all the presentations.

I went from confusion to elation, to I’m not sure what because there was so much going on. I think you might say, gee this seems to be all about healthcare and this is a Population Subcommittee, that is what was so interesting that a lot of the different aspects of what the committee does came out of this.

They really are talking about populations. They’re not talking about the whole population. They are talking about maybe just the population of that medical home or of that practice.

They’re talking about a population approach where it’s not just one, whom did I see yesterday, or who am I seeing in the next half hour? It’s a population approach which was exciting for the population people because it’s looking like, I have this population that I’m trying to serve. They’re the ones who are coming in, they’re the ones who aren’t coming in. They’re the ones who have conditions that are being treated, that are not being treated. It has a longitudinal approach, which also is so important for population health data.

And of course, if you are talking about people who aren’t insured or among the disadvantaged or that may be not going to get the benefits of this but it also has been looked at, and there was a little discussion about how it can start to address disparities with being community health centers or even in the public sector.

Of course there was the standards issue, which we mentioned the ICPC or the terminology issues, and of course privacy and confidentiality issues because it’s based on the idea of a lot of information being shared and being available, at least within this practice or this medical home and so there are issues of that.

Leslie, did she come in here?

DR. STEINWACHS: She had to leave.

MS. GREENBERG: She was talking about it sounding paternalistic in some ways. We had the ethics view, the privacy. It had a lot of different pieces. That doesn’t mean that it could be the theme for everything the committee does. I’ve been trying to sit here and relate it to vial statistics. But of course, if you really did have a medical home, they’d be with you when you were born, and they’d be with you when you died too and everything in between– or with your children, or whatever.

I think it probably relates to vital statistics too, but I’m not quite sure. But it could be one theme and I just wanted to share with you about all these different streams.

DR. BLACKFORD: I wanted to offer a bit of an update from the other work that I’ve been involved in.

I mentioned briefly this morning the National Quality Forum Committee on Structural Measures for HIT. We considered the patient centered medical home and the measure set proposed by the NCQA.

Actually, after a fair amount of debate, came to endorse the measures set as a system of measures for PCMH and that will go for public commentary and what not in the NQF process.

My own reaction to it, both as a primary care internist, and part-time epidemiologist, and part-time informatitian, is I’m a little more sanguine perhaps in really looking for the evidence base that would suggest that actually, PCMH type concepts have been demonstrated to profoundly impact either individual care patterns, or population care patterns.

Certainly the Wagner model has gotten a lot of attention in press but in a review that we did at the Center for IT Leadership looking at IT in chronic disease management, in fact we only found one technology to be cost beneficial, and that was registries.

Just two other thoughts, I think the PCMH movement certainly is getting that ground swell which is very palpable, very tangible but I’m concerned that it’s more reactive to the erosion of primary care for other reasons – or for that reason rather.

It even still, it’s not fully adapted to what I think is going to be in the emerging world of a fully connected and wired healthcare delivery system where cognitive services might be delivered anywhere and procedural services might be localized at the centers of expertise.

Certainly the medic(?) clinic movement, the retail pharmacy type clinics, and all the rest of it, is going to challenge how we think about the systems of care and may actually have some good salient parts and some not so good parts.

My newcomer’s reaction here to the committee is that it absolutely needs to be in the agenda because the evidence is unclear. We need systematic measures at a level anyway, whether it’s PCMH or other.

DR. GREEN: You sound like testifiers. That sounds very much like the nature of the discussion.

For example, Barbara Starfield pointed out that the evidentiary base is quite weak and that it is basically providing the evidence that primary care works.

DR. STEINWACHS: But it doesn’t do everything primary care does.

MS. GREENBERG: It is the concepts that I think excited us and we finally decided – as you said, we kind of decided at the end that this wasn’t just about the medical home – it was about primary care, medical home, chronic disease.

DR. LAND: We did hear about one system that had shown some fairly dramatic improvement.

DR. BLACKFORD: That might be a subject of some debate given their investment in the record, versus primary care initiatives per se. That needs to be sorted out absolutely.

DR. CARR: I’d just like to follow up on the way you phrased it, Larry, which I think is very good. It relates to how I saw it at the end of the day and that’s gaps and also the tempo of change.

What we once had, in terms of care delivery we no longer have because of changes in how we live, where we live, and how we get paid, and all of that.

I am not as– I think many of us came away with saying, we are not quite sure what the medical home is or that we subscribe to it. But the attributes of continuity of care, and comprehensive care, timely, those are the things that I think we saw. And the Geisinger demonstration was IS in service of these attributes. I think the sense was we don’t have what we used to have. We’re very fragmented and broken now, looking for a solution.

The IS can bring us to a new place. I think the piece that we all agreed on, was patient centered. That real change from provider centered to patient centered, and then patient as the unifying web, whether it be at the retail pharmacy, clinic, or whatever, there’s some unifying source of information.

I think that was a lot of the enthusiasm. We started out with all reading what’s a medical home, but we came away saying, we understand the gaps, and we believe that IS done well, done correctly, can make a difference.

And done poorly, we heard a lot about electronic health records that are static and dumb, and that don’t do anything.

The real challenge is that we have a million practices go out and pick up a plug and play EHR, and derive no benefit from it and move no closer to where we’re trying to go.

DR. GREEN: What I really want to beat up on most is, it’s important in my view, for the committee and this subcommittee, to do work that’s relevant and targeted, and timely.

One of my take home messages from the hearing, if there is ever a moment, to start worrying about the data elements and measures necessary to assess this– we ought to do it right now, because this sucker’s is joined.

The old ways of doing things are burning down except in pediatrics. They are still fat and happy.

DR. STEINWACHS: They were only worried about specialty providers in pediatrics.

DR. GREEN: I don’t mean for that to be as disrespectful as it sounds. There is a timeliness issue here, that makes this a good thing to get on our near term agenda as opposed to we ought to get back to that in five year or so. Five years from now someone else will come up with a metric for this and they may not take the population’s perspective.

DR. STEINWACHS: What was interesting to me was the idea of a data model, in support of our primary care, or patient centered care. In some ways, when you think of it in a historical context — and starts to put it in what is a system’s context that makes the information necessary available and then the HIT certainly fits in there as a facilitating factor but doesn’t necessarily have to be there.

DR. GREEN: But it is implicit.

DR. STEINWACHS: Well, it is in a sense that that’s part of division given the way in which we seek out and use healthcare. Particularly you talked about something where it’s fractionated so it would go lots of places.

DR. GREEN: We heard testimony, that there is no sufficient way to actually report out why people enter into the U.S. healthcare system.

DR. STEINWACHS: The reason for visit.

DR. GREEN: The second thing we heard is that we don’t have adequate measures of patient centeredness and yet that’s the holy grail in all the ten years it hasn’t worked by the IOM.

Barbara just said it in plain English. No one knows how to measure comprehensiveness. But this medical home idea is not going to work unless it can be comprehensive. It has got to provide a comprehensive set of services and what would that be? And how would know that that comprehensiveness was there? She said, that doesn’t exist.

Those are data measurement issues that look to me like they are in our charge.

MS. FARQUHAR: When is the NQF coming out with that?

DR. BLACKFORD: I think it’s eminent I mean we just made our final determination and I think within two or four weeks, something like that, they will be open for public comment..

MS. FARQUHAR: You may want to as a committee, weight into NQF about that – including some of your testimony.

DR. CARR: The CEO was there testifying yesterday.

MS. FARQUHAR: Not Janet Corrigan.

That is another thing I wanted to tell you all. There was a cancer episode of care meeting that happened at NQF yesterday that basically looked at episodes of care – that I guess Janet was doing instead of Helen – but basically we have about 30 people at the table and 50 others in the room.

It was very hotly debated and well framed out. Basically they came up with the premise of pre-prevention all the way to the end of life, for cancer care. They also had conditions or areas that you would measure such as coordination, comfort, timeliness, really patient centered care, and then dug down to levels of provider level type stuff that would be interesting. They are going to continue and there will be a report out on that as well.

(Simultaneous discussion)

DR. STEINWACHS: — one rotates around vital statistics and so Ed, why don’t we stay in touch and Garland I sort of see as our point person on this, and certainly Marjorie is involved and everything.

The second is on the 21st Century. It seems to me, we need something going into the Executive Subcommittee Retreat on what we want to do.

I thought one way would be to hold a conference call and invite all the committee members that want to participate and talk some.

Before that, people ought to go on the website and look at the report and think about this. Whatever we propose to do ought to be specific, and if we are going to start in the near future, even though 2010 may be a ways away it takes a time to get going and get moving.

I think we need to begin to think about what we would be a proposal even though we might not start it until a number of months from now.

DR. BREEN: Would you have Cynthia send the URL for the report?

DR. STEINWACHS: Yes. I will ask Cynthia to do that. The third is on the medical home. I think we ought to have a separate conference call right around the medical home and all those who are interested in it, but to try and lay out what is it we should be doing, and try and get that going because if we are going to hold more hearings or activities, we need to plan those in the summer, to get them going.

Susan, what’s sort of your time frame?

MS. KANAAN: That’s an interesting question because it depends on what kind of a report you want to create.

I was just making a note that you may pursue this further. If you do then there is the question of at what point do you stop and say it’s time for a report?

I can do a report just on the hearing and if that’s what you want.

MS. GREENBERG: I think we should start with that.

MS. KANAAN: Is that what – okay. Then I would say a month –

DR. CARR: I also think it is a big topic and to keep waiting for the next thing or the next thing, it is going to be three years down the road.

MS. KANAAN: That makes sense to me. If we can talk about that for just a moment, or maybe we can do it in the morning at Quality.

I can do a thematic summary that’s relatively short and concise, that more people will read, and then refer people to the transcript and the slides and so on for the greater depth and detail or I can do a longer, more typical summary of each of the presentations and takes about the same amount of time.

DR. STEINWACHS: I would tend towards the thematic.

MS. KANAAN: That is the way I was leaning too.

DR. CARR: Exactly. I would start with the thematic and then we can discuss that and prioritize that –

DR. STEINWACHS: For the committee here, as well as the whole committee, reading thematic would help to sort of pull it together where I think reading a summary of each of the testimonies is okay, but it is a labor or love. it together. Whereas reading a summary of each of these testimonies is okay but it’s a labor of love–

MS. KANAAN: Then the reader has to do the synthesis.

MS. GREENBERG: I think identifying too, where there really were consensus at least among these – we had quite an impressive array of people but where there were very different views.

DR. CARR: Actually I will need a grid because I am a splitter.

(Miscellaneous comments)

MS. KANAAN: To answer Don’s question about timing, I would say a month max.

MS. GREENBERG: Do you need the transcripts?

MS. KANAAN: Yes, I will wait for the transcript.

DR. BREEN: Can Justine’s table be in there too? I thought that was useful as a synthetic device.

MS. KANAAN: Yes. I thought so, too.

(Whereupon, the subcommittee adjourned at 6:00 p.m.)