[This Transcript is Unedited]




February 26, 2009

Hubert Humphrey Building
200 Independence Avenue SW
Washington, DC

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

Committee Members:

  • Donald Steinwachs, Ph.D., Co-Chair
  • William J. Scanlon, Ph.D, Co-Chair
  • Larry A. Green, M.D.
  • Mark C. Hornbrook, Ph.D
  • Garland Land, MPH
  • Blackford Middleton, M.D.
  • Walter G. Suarez, M.D.


  • Introductions and Future Subcommittee Agenda
  • Updating the Health Statistics Vision for the 21st Century – Dan Friedman

P R O C E E D I N G S (8:00 a.m.)

Agenda Item: Introductions and Future Subcommittee Agenda

DR. STEINWACHS: Why don’t we go around the room and do introductions, so Dan Friedman knows who we are.

(Whereupon, introductions were performed.)

DR. STEINWACHS: I don’t know if we have anything to say or whether we want to jump in with Dan.

DR. SCANLON: The other agenda that came up yesterday was we sent a letter to the Secretary or to the Acting Secretary about the whole budget issue, with respect to the stimulus money, to address the short term.

Another factor though is that the appropriation moving through Congress right now may partially address things, so we may need to think about how to incorporate any news from that, which is probably a week ago. The continuing resolution expires on March 6.

DR. STEINWACHS: Garland has drafted something before the end of the meeting to share. Probably what it means is, we need to get committee input on it. We may have something to take to the full committee, but the full committee doesn’t seem to have much time today to talk about things, so that probably means some sort of conference call follow-up to get it moving.

DR. SCANLON: This may parallel the Board of Scientific Counselors, was considering a letter to —

PARTICIPANT: It has gone forward.

DR. SCANLON: It has gone forward? Okay.

DR. STEINWACHS: We want to welcome Dan Freedman. I was looking for your name on the agenda; I see they have got me updating it. Boy, really, we are in trouble.

Dan has graciously agreed to work for the committee in leading us through the process in doing the bulk of the work on the update. We will be talking at the full committee meeting in more detail about it, but I thought you could share with this group the scope of what you are going to be undertaking.

Since you helped write the original report, you and Barbara I always associate with the original report. Maybe I am wrong.

DR. FRIEDMAN: Barbara was actually a valued member of the work group.

DR. STEINWACHS: Cynthia sent out the text of the executive summary. These are hard to come by. Why don’t you go ahead? I think some of the committee members are newer. They have heard about the report, but I don’t think they have heard much.

Agenda Item: Updating the Health Statistics Vision for the 21st Century

DR. FRIEDMAN: I will be going over exactly the same material at the full committee meeting, so I don’t want to belabor it.

This was a report that was a joint report of the committee and CHS and the Data Council. It was published in 2002, which was the year after the NHII report, Information for Health, was published. There was a close connection in the development of the two reports.

The report as I will say in three hours was the result of a three year long consultative process. It involved probably at least a dozen presentations with substantial feedback to various professional groups and conferences.

It involved, I believe it was in 1999, a National Academies of Science workshop. It involved a series of commissioned papers from authors in the U.S. and Canada. Based upon that, we developed an interim report, which is probably 2000-2001. Then that interim report we took to a series of expert discussion groups, we took to four regional public hearings. In those public hearings, among other things, we solicited recommendations.

We developed the report in 2001 and 2002, and then incorporated in the report, but — incorporated in the report were a series of recommendations. These were committee recommendations. They were not Data Council and were not NCVHS recommendations. First we solicited recommendations from participants in the process. Then we engaged in a formal process of circulating draft recommendations among participants in the formal process. We sought feedback from the draft recommendations and then we recirculated the recommendations to the participants. So it was a painstaking process.

DR. STEINWACHS: I thought you were going to say painful.

DR. FRIEDMAN: Well, it really wasn’t. I would say that the times it was most painful was going back and forth with our colleagues, not including Barbara, who was a pleasure to work with.

I wrote the report together with my colleague Gibb Parrish, who at the time was senior epidemiologist with CDC. Gibb has since left CDC. He and I do most of our work together. He is my co-investigator in this modest project. Also, Ed Hunter, who was the other author of the report, Ed is now the interim director of the CDC Washington office. At the time he was assistant director of NCHS.

The recommendations in the report were based upon a series of ten principles that we developed. The first principle was certainly the most — I don’t know if I would say least popular, but most probably controversial. That called for much tighter central coordination and management of what we called the health statistics enterprise.

There were 30 recommendations that were developed in support of implementing those ten guiding principles, and then there were six other recommendations that were also developed for strengthening what we called the health statistics enterprise.

The recommendations, we are going to have feedback on the other recommendations, but that was basically — at the time NCHS did not have their Board of Scientific Counselors.

MS. GREENBERG: As I recall it, the most painful part of it, although it turned out to be excellent, was the planning of the joint meeting with the National Academies of Science, because it is difficult for them to play with another group because of their processes.

DR. STEINWACHS: Good morning. This is Don Steinwachs. Who is on the phone?

MS. BREEN: Hello.

DR. STEINWACHS: Dan is going at the meeting to be talking more extensively about what this project is in terms of the updating activities and in terms of updating the vision to take into account electronic health records and things that were not a prominent part of the agenda at the time, as well as to revisit recommendations.

DR. SUAREZ: Where would you say we are on the state of implementation of the recommendations?

DR. STEINWACHS: Boy, you go right to the heart of things, don’t you? You just cut right to it.

DR. FRIEDMAN: Walter, what I would say is, this project just started a couple of weeks ago, so I am going to —

DR. STEINWACHS: You are going to punt.

DR. FRIEDMAN: I am going to punt. I think I am going to punt.

DR. STEINWACHS: You can see this committee is anxious for a final report, but we really appreciate you taking this on.

MR. LAND: Is what you are working on that very thing, is to look at how the recommendations have been accomplished? I wasn’t sure.

DR. FRIEDMAN: Basically the project has two phases. The first phase is to do a literature review, conduct expert interviews, go through the report, go through the recommendations, and come up with some suggestions of what recommendations need to be revisited with guidance from the committee, and make some suggestions about how the report could be updated. That is the first phase that goes through September.

The second phase would be modestly rewriting the report. The report was, looking back on it it was a three year effort. I was a committee member at the time, and I put a lot of time into it, and Gibb Parrish and Ed Hunter put a ridiculous amount of time into it. I don’t think that it would be realistic to expect an equivalent report to be produced, but I think that there would be an opportunity to take a good hard look at what has been done, what hasn’t been done, and what remains to be done.

One of the things that I am going to be looking to you for and to the committee for is guidance on which of the recommendations Gibb and I should really spend our time on. Of those 36 recommendations, some of them, you may just say to us they are no longer relevant or they are not important, and you should just ignore them, and some of them, you may say, this is really worth your time and your effort.

MS. GREENBERG: I would say, I know that Ed Sondik, who of course actually initiated the project way back when, whenever it was, 2000 or something. At this point he is very interested in looking forward as to — looking back, but really looking forward as well.

It is like several things the committee has done. When we decided to revisit this and particularly how to look at the new electronic environment or anticipated electronic environment would impact, we didn’t know that there was going to be real money for it as there is now to select the standards initiative. So I guess I would have to say this is more timely than ever.

MS. BREEN: Marjorie, the monies available from the standards initiative, could you talk about that a little bit more?

MS. GREENBERG: I don’t want to take up the time of this group, but they had their first hearing of four days on Tuesday, in which they are revisiting what has been accomplished over the last several years in the national standards initiative and agenda and health data standards, primarily related to the ONC activities, but related activities, and then what has gone well, what hasn’t gone well, and where do we go from here.

MS. BREEN: You said they have been allocated a considerable amount of money.

DR. STEINWACHS: You said something about money, Marjorie. That is what she is asking about, money.

MS. GREENBERG: Oh. I was thinking about the recovery bill, where there is a huge amount of money for electronic health records.

MS. BREEN: Okeydoke.

DR. GREEN: Is it the right time to respond to his —

DR. STEINWACHS: We can have a short discussion here, and then Dan is going to be taking us through the steps.

DR. GREEN: For discussion, one is, I don’t think there is anything wrong with this, looking back at it. It was right then, and as far as I’m concerned, it is still basically right. We can go to a lot of trouble and spending a lot of time tweaking and refining it.

My overall reaction is that this is not the moment to study this a lot. I think this is the moment to take action on several of the things that are already well developed and well established. So in terms of your question about things that might be different, and I would add to that, are pregnant, and are just sitting there ready for a midwife, that sort of thing, I want to call our four things from the report that seem to be right there.

One of the things that has changed is that NIH has entered this landscape. I’m not sure they actually understand that they have entered this landscape quite the way they have, but the commitment to transforming the U.S. research enterprise through the CTSA awards, which now from what we see in the budgets and stuff, I think they are likely to do more of. They could have stopped at 38, but it looks to me like they are likely to do another round of awards.

We are going to have 50 to 60 of these awards out which are required to have community engagement components in them, which go to at least a half a dozen of the recommendations and provide a new location of engagement that was not there in 2002.

The idea of the geocoding recommendation, the sophistication and widespread availability of the technology to do that is quite different now than it was in 2002. That is ready for everyday use.

The recommendation about the tool kit for data sets for use at the community level, the push for more community based participatory research, the union of primary care and public health, it is out there again, trying to happen. Many times it is the lack of a tool kit and just a little bit of facilitative work that is all that keeps this from happening now. That is a splendid recommendation in 2002, but if that could be acted upon, and the framework of the stimulus bill and where we are right now, that is a high leverage proposition in my view.

I’ll hush with this last one, the development of person oriented longitudinal databases. That is a world changer that rewrites medical textbooks, that redesigns all sorts of things, that is really, really important.

Although all of us at this table are pretty skeptical about a lot of things about electronic health records and the personal health record and all that, and we know enough to be dangerous and also enough to be scared and intimidated and all that sort of stuff, somewhere in there is a pony. That recommendation is huge.

I would call that as being another place where there is action. There was no Google and there was no Microsoft health poll, and there weren’t these personal advocacy groups that were pushing this along, et cetera.

So the main point I want to go back to where I started is, I would much prefer to see us as the Population Subcommittee and the NCVHS is a committee adopt a posture here, a posture that we are standing on the shoulders of giants and great work. That is not our challenge to call for a large study for the next two or three years. What we really ought to be doing is taking advantage of all the prior work and prioritizing some place where we think there is a chance of leveraging it and doing something. We need to actually do something.

DR. STEINWACHS: I can see you inspired Larry.

DR. SUAREZ: I said yesterday at the committee meeting, I think we are out for a bold action. This is one area where we need to take bold action.

I absolutely agree, Larry. I think identifying how we can actually do something, and it is now rather than in the next — like I said yesterday, in nine months things are going to be so much in motion that trying to steer the train is not going to be possible. The train has already gone, and with a very strong direction. At least, that is what is expected. So acting now in whatever way and shape we can to try to influence that direction the train is going to take is going to be critical. There could be an underlying process for updating some of the more detailed sets of recommendations or activities, but I think probably it is almost like put a stake in the ground about how we believe overall this reshaping should be done, and then working out the details in a longer time frame.

DR. STEINWACHS: Part of the strategy, and this was before we knew there was recovery money and other things, to keep this report alive and to keep the vision relevant was tweaking. It is just making sure that something that we found useful is still a live part and not just a piece of history.

I think what both of you are doing is pointing to, we need to think about what we can do with it in the process. We don’t have to wait for this to finish.

DR. HORNBROOK: I want to say that I live in a world where we have had electronic medical records since 1997, both for me personally, but also for research. My research is now getting to the point of being able to model BMI for large portions of pregnant populations for micro data points. That is, every single time the woman comes in, there are pre pregnancy, prenatal and post delivery visits. You can now model the BMI process, and you have thousands of data points, a lot of random error that occurs with variations in individual behavior or how you get somebody on the scale and how you measure their height, become random.

So it is very, very useful. It means a whole different way of measuring population health using clinical measures. We can also begin to now look at glycosylated hemoglobin. We can look at triglycerides, we can look at liver function, laboratory measures that used to be something that only the national examination survey can get on a small population. Now you can get it on large groups and drill down into the Medicaid population, into the African American population, into women on welfare. Eventually you get into uninsured people as well.

So there is a ton of stuff to be rapidly extracted out of all the health plans that have electronic medical records. We do of course teach the rest of the world the benefits that those systems can already provide.

MS. BREEN: Who was speaking, please?

DR. STEINWACHS: That was Mike Hornbrook from Kaiser Permanente.

MS. BREEN: From Kaiser?


MS. GREENBERG: Someone else has joined us on the phone. Who is that, please?

MS. BREEN: One of the things that I would emphasize — was that Dan who said that the report was sound?

MS. GREENBERG: No, that was Larry Green.

MS. BREEN: Oh, Larry, okay, great.

MS. GREENBERG: Dan is too modest to say that.

MS. BREEN: I would echo that for two reasons. Well, I would echo that for one reason, and then I have one other thing to add to it.

The thing I would have to add to it is that I think that local data collection is another thing that is really important that we don’t do enough of. Most of our federal data collection provides estimates at the — and this is surveys in particular, provides estimates at the national level. It is hard to bore down to the state and particularly to the local level. The county health departments and below that is really where people can take action and understand where interventions are needed and what opportunities are available, where health disparities are, what kind of interventions can occur, and what communities we need to be working with.

So I would emphasize that feature. That has been one of the recommendations of the report as well. But I also wanted to emphasize the urgency of this. I do work at NIH, which has been provided quite a lot of money through both the recovery and the stimulus package, some coming from AHRQ for comparative effectiveness research, and other is more general, which is probably going to go through the grant process to grantees.

NIH has not made decisions on how that money will be allocated, but we have been asked for ideas. We need to get ideas within the next couple of weeks. They are anticipating making decisions within the next couple of weeks about how this money will be allocated, because it all needs to be allocated by September of 2010, and of course the Administration would prefer that it be spent by then, and be up and running, creating jobs and moving the economy forward.

So I just wanted to mention that. Usually we think of the government as working very slowly, but in this case it is moving very quickly, unprecedentedly so. So I just wanted to mention that as our time line.

MS. GREENBERG: That ties in well with what I was going to say about this urgency thing. I know the subcommittee is going to be talking about a letter to take to the full committee, related to the Recovery Act and the health statistics enterprise, as I heard it yesterday. I think that letter could reference this report.

Obviously that letter couldn’t make any specific comments other than to extol it or to say that set a foundation for us, and we have actually missed the mark quite a bit, I would say, although Dan — I don’t want to prejudge his findings, but I think a lot of things speak for themselves, as to how much of that was implemented or are we better off now than we were eight years ago.

So I think that would be a way to not have to wait until June 2010 or whatever to raise the report again without going into specifics.

The other thing I just wanted to say, Dan, I don’t know if you are familiar with the CTSA projects that were mentioned. I myself wasn’t, but Mark brought them to our attention, and we did have a presentation since the one at the November meeting. That is in the transcript and the minutes, and we can give you contacts, et cetera.

DR. GREEN: To build off of that, I would like to see us go further than extolling the report in a letter. I think the challenge within the next two weeks time frame, I am up for it. I am ready to rise to that bait.

DR. STEINWACHS: And Walter is going to help.

DR. GREEN: As a start, what we heard in the last couple of days setting this up. Dr. Kolander has his hands more than full. He has statutory requirements to develop something like a cooperative extension agency to state by state develop an educational training and support system to help implement electronic health records nationwide. Unprecedented opportunity as far as I am concerned.

And we have got to create jobs. That is a workforce that has got to be created nearly instantly. Pretty big challenge. But why can’t their role as they implement EHRs include addressing some of these recommendations and trying to install into the DNA of these redesigned information systems going into the communities all over the place the mechanism[s and wherewithal to actually do some of the things that were proposed.

Mark just illustrated it with his data set, with the BMI evolution. We are looking at that not just being available, and integrated delivery system where the insurer and the provider are the same, but in the largest platform of health care delivery in the country, which is front line primary care practices. So that is ready to rock and roll.

The CTSA thing, the transformative part of it is the community engagement part of it. The NIH has confessed that they can’t accomplish their mission if they continue to do research in the way they have been doing it, where they do it two people and extract them from real world and do stuff, and then try to get us doctors to behave ourselves.

They are at least tolerating right at this point in time the notion that they need to move more toward effectiveness research, and that they can use other data sources and they can make these other linkages. This overlaps that quite nicely.

I had a third thing, but I think it is your turn.

DR. SUAREZ: I wanted to bring up a source of information that would be very helpful. Garland and I participated in this. It is the Joint Public Health Informatics Task Force. I don’t know if you are familiar with that organization, but it represents basically the vast majority of the state and local public health professionals from ANASAS to CSD to NACCHO, ASSHTO, the Consortium. There are about seven organizations there.

We had a meeting a couple of weeks or, or actually a month or so ago, where we started to identify shovel ready projects. There are a number of shovel ready projects as they call them that can be immediately implemented, including things like at the very local level establishing health information exchanges that are pretty much letting great respect by the local public health agencies.

So being able to bring forth very quickly a series of recommendations within the next couple of weeks, within the next two or three or four weeks, and being able to perhaps listen to the recommendations of this organization, I think would be a way of identify priority projects that can happen very quickly, that can build in from these type of recommendations, and that can fulfill our mission and almost desire into the future of a 21st century health statistics system.

So I think that is one place where there is immediate resource information for project implementation very quickly.

DR. HORNBROOK: Have we ever had the practice based research networks come visit us? Before my time?

DR. STEINWACHS: Not during my time, I don’t think so.

DR. HORNBROOK: Practice based research networks.

DR. STEINWACHS: This is HRQs, right?

DR. HORNBROOK: HRQ and HRSA and a few other self created networks. One of the things that in terms of immediate demonstrations, in Oregon we have something called organization comprehensive health networks. It is very innovative, because their model of the electronic medical record system is a single server that goes across most of the FHQCs in Oregon, and now they are branching into California and also Chicago.

So there is a multi state consortium where the medical record data is in one server in Portland. So any patient that goes around the various county clinics in Oregon doing drug seeking behavior, the providers know it, because they open one chart, not multiple chart, just one chart.

This is an example to me of where you could literally go into the health system and get information on undocumented aliens who are getting health care, uninsured folks and Medicaid folks. Then the people who leave the organized health care system and go to county clinics for things they don’t want their primary care doctor to know about, in terms of feeding a health statistics system in ways that we have not had before.

DR. GREEN: Another example of the PBRNs is a thing called DartMed that has been also supported by AHRQ. It uses the data standard, the CCR that was harmonized with HL-7 in the CCD, but it is basically a piece of software that they use in multiple PBRNs all across the country.

It interfaces with 21 proprietary EHRs, all the big ones. Two o’clock in the morning, it goes in and extracts everything it can find that belongs in the CCR from all of their patients and puts it in a data repository that stays at the practice, but organize it in a way that it can be queried across the whole system.

What the CCR has entered, for example, is, it has the U.S. Preventive Services Task Force prevention recommendations. So when they run the software across the practices, they know the next morning the names and addresses of the patients that have and have not gotten the preventive services stuff. It is all deidentified when they centralize this, because the data never leave the practice in actual fact, but then they can turn around and send a message back to the practice which they can basically decode and reidentify for their patients, and now you have got proportions, distributions, but you also have the prescription for intervention, the right people on the ground where those people are living, as opposed to general blanket things that says, we really ought to improve colorectal cancer screening. Now you say, if you want to improve colorectal cancer screening, and you can GIS that sucker and you can hand them a map that says, here is where the patients that need this are located. They all cluster here in the corner and they have got the right community relationships, and everyone goes to church at the same place, and you can do something about this.

So what Mark and I are talking about is not stuff that we should plan for and think about. This is stuff that is actually on the ground and becoming operational, that could really give juice to these recommendations.

MS. BREEN: Sorry, can I ask who is speaking again?

DR. STEINWACHS: That was Larry Green.

MS. BREEN: Are you in Colorado? You were talking about Oregon.

DR. GREEN: Larry Hornbrook started, Larry Green picked up.

DR. HITCHCOCK: This is Dale, Nancy, trying to get a few words in here. Sorry I came in late. I may have missed this, but it strikes me that we are living in an old house where the foundation is falling apart, and we are talking about building a bunch of additions around it.

I would be in favor of revisiting the report, updating the report a bit, laying it out for the new Administration, that this is where we think in general statistics should be going, and have that as a priority that we could do fairly easily. Maybe even in a letter saying, since we have written the report, we now think this, or something.

There are two more things. One is the extension center models for the HIT community. I don’t know, I haven’t heard much talk about integrating those into the public health community. It seems like they have been meant to advise folks who provide direct care and not so much the public health community.

Finally, Mark, I am a Kaiser patient. I have no problem with my data being out there and used, but how accessible is it? We talked about stewardship the other day. Is the Kaiser data proprietary, or just how do you go about —

DR. HORNBROOK: There is a whole series of issues. I won’t go into all kinds of details. There is interaction with HIPAA. There is interactions with Kaiser as a competitive health care system that is worried about proprietary interests, and then there is Kaiser as a national public utility, which is increasingly being discussed close to the White House and George Albertson. So there are things way beyond me that are going on that may surprise a lot of us eventually.

DR. GREEN: If I could follow up on one of the things, a union of the practice based research networks and your issue about the linkage of the extension agency to help with the public health community, that is has been done successfully in Oklahoma. It has been operating for three years. They united the public health department, the state professional societies and the statewide practice based research network, and they have the group they call the P’s. The P’s are practice enhancement assistance, and the P’s have pods. They know they can take care of at least three practices and often as many as six. They regionalize them. All of them are at the same table.

They have even created a common government structure, where the people that are helping them implement and cope with their EHRs have the public health departments sitting at the table with them.

A guy named Jim Mold is the principal architect of that. He tells me that California, Texas, Colorado and someplace else is ready to experiment with that.

MS. JACKSON: Can I just tie it together, because I know you don’t have much time. I know what you will hear in the full committee today then is a reference to the standards discussion that they had, where the visionaries talked in the very beginning, one of the first panels. I’ll get the information on that.

One of the topics that came out was the transition from health information technology to health communication technology, the merging of all of these concepts. There is a lot here. I am just so thrilled you are here to start these issues percolating, but we seem to be either in the old house with the add-ons or the 21st century, starting brand new, and where the rubber may hit the road, and you are going to dig in your shovel there.

But this is a great time to pull this together. We will get that information to you from John Tooker, Carol Diamond, whose main theme was, we cannot replicate what is here right now, with the funds that are available. There is no sense is fracturing out and duplicating more of what is here. Everyone is really talking about the vision of going forward. This is a great time.

MS. GREENBERG: New York City which Carol talked about, where they definitely have partnered public health with the clinical setting, following up on what you said, Larry.

It may well be true that the legislative language didn’t envision the partnership with public health, but they should have.

DR. STEINWACHS: Why don’t we do this? I think I have three volunteers. I’ve got Larry, Walter and Mark. Why don’t you caucus?

There are two things. One is, we need a sense of what might flow out of this recommendation. The other is, we may need to get testimony and other things, because we have to do it based on something other than using just us. But maybe there is enough already.

Why don’t you try to do that today, and then near the end of the day maybe we can try and talk about next steps. If we are going to move quickly, we need to figure out how to do that.

MS. GREENBERG: What are you asking them to do?

MS. BREEN: Will they draft a letter?

MS. GREENBERG: I thought there was a letter that was going to be taken to them.

DR. STEINWACHS: We have a letter we are working on. I would differentiate that. I would welcome Ed Sondik here, because we are going to talk about some of those issues. But it seemed to me that there are pieces here that you are talking about that go well beyond the focus of what we had originally thought about this letter. Maybe the two come together, and that would be fine, too. But some of these things that we are talking about would require us getting some testimony in order to build off of that. So I am not precluding that either, but it seems to me we need to get together, and we need some concrete next steps of what might be doable.

DR. SONDIK: I’m sorry I missed the beginning of the meeting, but with what is coming and almost here, it seems as if the testimony should focus on how would one modify the recommendations based on health care reform, or at least how it is supposed to be shaping on electronic health records, on the increased focus on measure.

There is the IOM report that gave the 20 measures for the state of the USA activity. I don’t know if everybody is familiar with that, but that is going to get a good deal more publicity, and the idea of having a set of measures; an op-ed in the New York Times a couple of days ago about that.

I look at the recommendations. To me, I think the recommendations are very strong, but they are a bit dated now. It is hard to believe, but they are a bit dated. But put them in perspective with what is about to happen makes a great deal of sense. We may have a Data Council, but still coordinating data around the Department, much more could be done. Collaborations; much more could be done with that.

I think this is more than timely, and I think something that would put it together rapidly and result in a letter to the Secretary it seems to me would be ideal.

DR. STEINWACHS: Do you want to take over the next piece?

DR. SCANLON: Given that it is a quarter of nine, we might change our agenda. Jim, are you on the phone?

DR. LEPOWSKI: This is Jim Lepowski, CMS.

DR. SCANLON: We were going to talk about use of electronic health records in the vital statistics system, which is something that the Board of Scientific Counselors has been interested in. Maybe we can get Jim hooked in for the 11:45 spot. Garland also knows this issue well. I was not be at the BSC meeting for that discussion, so I can’t talk about what they wanted to be conveyed to the full committee. So we will have to do that there.

I think it is fair we should talk about this idea of a letter that came up yesterday. The fact that there is potential within the stimulus money to think about how can we reinforce health statistics. Garland has prepared a draft.

Ed may want to update us on where we are in terms of the appropriations bills that are coming through and how that may change anything that we may want to say at this point in time. But the idea was that a letter from NCVHS to the Secretary saying this enterprise is incredibly important, has been shortchanged, and we are feeling the impacts in terms of the lost opportunities for collection of data, that they are vital.

DR. STEINWACHS: I finally figured out, if you cut the survey, you keep cutting jobs. I think we are trying to save jobs here.

DR. SCANLON: That’s right.

MR. LAND: This letter may be too narrow. I’ll mention that up front. I have been focusing on the biostatistics portion, because that is where I am most familiar with what is going on, and have been in contact with people in the DDS division to understand the concepts.

As I understand it, CDC has reviewed — and again, I’ll just talk about biostatistics, it may be broader than this — has reviewed the e-vitals proposal that was made by the National Center. That occurred yesterday. It got a high rating. It is coming up to the Department probably today or tomorrow.

Ed, you may know more about this than I do, but it is changing on an hourly basis, as I understand it. But the decisions may be made within a week, in terms of what is funded. So that is the urgency; whatever we do has to be done fairly quickly and get into the right hands for decision makers.

This letter as I say is focused on supporting the biostatistics system in two regards. One is that all state health departments have electronic birth and death systems. Secondly, so that we can continue to collect the data that has been collected in the past, as opposed to cutting back to just the core items. I think both of those concepts are in the e-vitals proposal the Center put forward.

I think there are probably some more things in that proposal that I’m not familiar with, but those are the two things that I am familiar with.

This letter, a different version of it, was sent to — when we thought it was Secretary Daschle, was sent by the Joint Public Health Informatics Task Force that Walter mentioned earlier, in support of our system also. There has been discussion here that maybe we need to be mentioning the 20th century report, and maybe we need to be regarding it to health statistics. I don’t really know what was put forward in terms of health statistics, so that is why I didn’t put anything in here on that, but certainly that can be easily done.

DR. SCANLON: There is a tie here between the stimulus monies and the vital statistics system. I think there is potentially the broader issue of the continuing funding across time within the annual budget. The latter has been a problem which we need to be thinking about, in which we had discussed but we have never thought about sending a letter.

We had talked about a different topic to bring up in the introductory letter to the Secretary, which was the whole issue of data access, but this is as important if there is no data to access.

MR. LAND: I tried to keep this focused on the matter at hand, the money. I think it would need to be talking about the longer term issue somewhere. I don’t know if that should be in this one or not.

DR. SCANLON: I am wondering about whether we want to be as detailed as we are here, or whether we want to think about presenting these two very important distinct points in a rather concise way.

MS. GREENBERG: The second point being the data access?

DR. SCANLON: No, the second point being the broader issue of resources.

MS. GREENBERG: What I heard yesterday, —

MS. BREEN: Resources for how you are defining it?

DR. STEINWACHS: This is resources for maintaining the surveys and building the basic capacity. It is the ongoing budgetary requirements.

MS. BREEN: So surveillance and electronic records and all of that.

MS. GREENBERG: I heard what Carol McCall raised yesterday. It really was more about the fact that this was — certainly the e-vitals is a very critical part of this, but that it was the fact that at the time that all these resources potentially are going into electronic health records and comparative effectiveness research and all of these other areas, the health statistical system was the foundation for a lot of the outcomes research and monitoring health reform and all of that is being degraded.

So I think in that sense, the e-vitals is very important, but as I heard it, the committee was interested in a letter that was broader.

Also, you could consider an attachment providing more detail on the e-vital, since it was part of both the House bill and the Senate bill, and then it was named in the House bill and the Senate bill, and got dropped from being named.

Also, I just glanced through this letter, but I think what it misses, Garland, and you and I may not completely agree on the importance of this, but I think in the context of the Recovery Act, et cetera, it is very important. That is the linkage with electronic health records and the relationship to electronic health records. I don’t think that is mentioned in this letter.

DR. HITCHCOCK: And the shovel readiness, too. I don’t see the shovel readiness here.

MS. GREENBERG: Yes. But I think certainly the NCHS proposal which you are fairly aware of does emphasize that. But anyway, I may have said too much already. Ed may want to say something or may not.

DR. SONDIK: My understanding is that the monies for health IT are going to be looked at in the context of NHIN. It is extremely important that this proposal, this particular one, the e-vitals, show how it relates to the NHIN, either directly as a part of the system or how by being a part of the system it then creates linkages with other parts of public health, and that it is value added.

I just glanced over this quickly. I think this letter is good, but it doesn’t link it to that structure. According to my discussions with Les Leonard, who heads the informatics center at CDC and is also chairing one of these groups, chairing the one at this level, that is a very important thing to emphasize.

We have , we being NCHS, have put in initiatives for — we don’t have one that says what we need is support for the nation’s health statistics system over the next two years. We didn’t think that that was appropriate for the stimulus ones. What we have done is put in proposals.

I guess it is okay to discuss this. No one has said this is all that close hold, because we have already discussed one here, but we have put in one having to do with workforce, which I thought was important.

But more important than that is an emphasis on the state data at the state and local level, pointing out that in order to get solid data there, we have to have greater resources at the national level to be able to supply some of that data. For example, beefing up the HIS not to 100,000, not to 87 where it was, it is now at 38,000 or so, not back to 87 or so, not to 100,000, but actually go to 250,000. Even if that was done for a short period of time, that would increase the amount of information that we have. That could be a very strong database to work from.

I hope the proposal — I know what it says, but we never know how other people will read it. But that was just one of the things that we talked about. In a way, increasing the information content over the next couple of years so that that could be used, even if it only lasted for that long, so that could be used in health reform, and focus on disparities.

MS. GREENBERG: Comparative effectiveness.

DR. SONDIK: Yes, we have one on comparative effectiveness as well. Our point in that is that the nation’s health statistics system has the information that comes out of the surveys and the vital statistics is the foundation really that comparative effectiveness research is built on.

I think that is really well recognized. But again, whether that will make it through, I really don’t know. What we do not do in proposals is, other than in the e-vitals one, is link it strongly to NHIN. I am sitting here starting to think, maybe we could have done that, put a twist on it. But one possibility is for a letter to point out that it would be appropriate for the stimulus monies, if that is in fact what the committee feels, appropriate for stimulus monies to be used to increase the amount of information that we get over this period of time for foundation for health reform, for building an additional set of measures of health and health care that can be tracked.

MS. GREENBERG: Just set to establish the capacity to use these electronic health records when they come on line.

DR. SONDIK: Right.

MS. GREENBERG: Right now, they are accepted in some cases as yours, they are there to use, but I think that connection, it is previewing the 21st century vision update, but if you look at things that can be done in the short term, —

DR. SONDIK: The comparative effectiveness may be on an entirely different time schedule. I emphasize the may. But even as we met, I was in Atlanta yesterday and the day before; even as we met, somebody got an e-mail saying no, no, it is July. Rather than this week or whatever it is, for that one it is really in July. I take that with a grain of whatever.

DR. SCANLON: In both directions.

DR. SONDIK: Right, I really don’t know. But that seems to be on a different time stream.

The other pot of money is the prevention and health and wellness fund. A portion of that money goes to AHRQ, and a portion of it goes to NIH. As much as it goes to NIH is with the Secretary. So people are looking to that as something that can be competed for.

I think that the surveys and the vital statistics are just fundamental to this in telling us what is going on and baseline. But also perhaps with the flexibility of those mechanisms getting us additional data that can be used directly in the studies.

MR. LAND: Which pot of money are you trying to go after, Ed?

DR. SONDIK: I would view it as three. We are submitting as part of CDC. CDC is going after the three, the health IT, comparative effectiveness and the general wellness.

The wellness one is the least well defined. There may be some things happening there. One of the things that we heard is that maybe there is something like a theme they are going to be thinking about. We really don’t know. When I say fluid, it is quite an incredible process.

I actually give tremendous credit to the people who are working on this, who are keeping their heads about this and thinking very — thinking in the right direction. It is anecdotal, but we have been getting e-mails from across the Department about collaboration. I sent out notes to CDC for example about what we were planning to submit. I got e-mails back immediately, and I mean immediately, we want to be a part of this one and we want to do this one and this one. It is very interesting.

I sat in on a review of some of these yesterday in Atlanta, which is the internal CDC review. I was very impressed with what people have put together in a short period of time, and the kind of spirit that undergirds this.

DR. STEINWACHS: We need to bring some of this to action closure.

DR. HORNBROOK: It just seems to me that from a scientific perspective, the country is at a tipping point. If we don’t have an adequate basis for evaluating the effects of national health reform, we miss it, because if you don’t have the data now, you will never have it.

So we can make an argument in the spirit of the Recovery Act that there is a now or never aspect of building the foundation for evaluating the improving in the health care and health status of our citizens.

DR. GREEN: From what I have heard from Garland and everybody’s comments, I believe that we have closure here. I want to advocate that we write a letter for sure, and that our purchase here, where we can get this in and contextualize it, we need to use the word accountability.

The accountability, that is a big huge problem. Did this investment get us anywhere, et cetera. Without the restoration of vital statistics, there is a certain hollowness in standing up in front of the country and saying we are going to be held accountable for whether we get stuff done.

The second point was, we have to connect this to the division of the Nationwide Health Information Network to modernize the vital health statistics. Then we can do everything that Garland has in his letter under that rubric, is my belief. We can give it timeliness and strategic positioning on the accountability question, and we can make the rest of the cases around the connection to the NHIN. I think it is a terrific letter, and it is a short letter.

DR. SCANLON: We will adjourn. I will work with Garland. We will try to expand this to be broader and include all the concepts that we had here today. We probably need to think about having a subcommittee call to approve a draft, and then a full committee call potentially to approve the entire letter.

MS. GREENBERG: If you are going to do this letter and it is going to have any impact, I think it has to be approved today.

DR. HITCHCOCK: Can we do it Friday at our hearing time?

DR. STEINWACHS: So what you are suggesting, Marjorie, that Garland and Bill go in the corner and draft something up that we can — do that today?

MS. GREENBERG: You were going to work on that, too.

DR. STEINWACHS: Let’s try today.

DR. SUAREZ: I can help. There are two paths here. One is this immediate letter. There is the other path, —

DR. STEINWACHS: We have three of you working on two.

DR. SUAREZ: I agree we need a letter.

DR. STEINWACHS: Justine is going to change me appropriately for bad behavior. I do want to thank Dale and Roshita for putting together what is going to be a fantastic hearing tomorrow. Thank you, much appreciated. I hope everyone who can will attend.

So we will close on that. We have two action items moving. Carol, it is all yours, and Justine.

(Whereupon, the meeting was adjourned at 9:06 a.m.)