[This Transcript is Unedited]
Department of Health and Human Services
Hubert H. Humphrey Building
Room 705A
200 Independence Avenue, SW
Washington, D.C. 20201
Agenda Item: Call to Order, Introductions - Dr. Cohn
DR. COHN: Good morning. I want to call this meeting to order. This is the second day of two days of meetings of the National Committee on Vital and Health Statistics. The Committee is the main public advisory Committee to the U.S. Department of Health and Human Services on national health information policy. I am Simon Cohn, I am the Acting Chair today in John Lumpkin's absence. I'm the National Director for Health Information Policy for Kaiser Permanente, and a practicing physician. Obviously I want to welcome Committee members, HHS staff and others here in person, and I want to welcome those listening in on the internet.
I also want to remind everyone to speak clearly and into the microphone so that people in the room can hear as well as those on the internet. With that, let's have introductions around the table, and then around the room, and after that we'll talk about the agenda for a moment. Marjorie?
MS. GREENBERG: I’m Marjorie Greenberg from the National Center for Health Statistics, CDC, and Executive Secretary to the Committee.
DR. STARFIELD: I'm Barbara Starfield from the Johns Hopkins University, just retired member of the Committee.
DR. SHORTLIFFE: I'm Ted Shortliffe from the Department of Biomedical Informatics at Columbia University.
DR. HUFF: Stan Huff, from the University of Utah and Intermountain Health Care, new member of the Committee.
DR. LENGERICH: Gene Lengerich, Penn State University, member of the Committee.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the Committee.
MR. BLAIR: Jeff Blair, Medical Records Institute, member of the Committee.
MR. HOUSTON: John Houston, UPMC Health Systems, new member of the Committee.
DR. FRIEDMAN: Dan Friedman, Massachusetts Department of Public Health, and I suppose if Simon can be the acting chair I can be an acting member of the Committee.
DR. MAYS: Vickie Mays, University of California, Los Angeles, member of the Committee.
MS. BEREK: Judy BEREK, Centers for Medicare and Medicaid Services, liaison to the Committee.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships, new member of the Committee.
DR. FITZMAURICE: Michael Fitzmaurice, liaison to the Committee and staff to the Subcommittee on Standards and Security.
MR. LOCALIO: Russell Localio, University of Pennsylvania School of Medicine, I’m a new member of the Committee.
DR. HARDING: Richard Harding, Department of Neuropsychiatry, University of South Carolina, member.
MS. COLTIN: Kathryn Coltin, Harvard Pilgrim Health Care, retiring member.
MR. SCANLON: I’m Jim Scanlon, from the HHS Office of Planning and Evaluation, and I'm the Executive Staff Director for the Committee.
DR. NEWACHECK: Paul Newacheck from the University of California, San Francisco, retiring member of the Committee.
MS. MALINA: Cynthia Malina, CEO, Alternative Link.
MS. BURWELL: Audrey Burwell, Office of Minority Health, co-lead staff for the Subcommittee on Populations.
MS. CARR: Willene(?) Carr, Health Resources and Services Administration.
DR. GUITERREZ: Nilsa Guiterrez, I'm the Medical Director for CMS, Region Two.
MS. PICKETT: Donna Pickett, National Center for Health Statistics, CDC.
MS. PROPHET-BOWMAN: Sue Prophet-Bowman, American Health Information Management Association.
MS. BLOOMROSEN: Meryl Bloomrosen.
MS. QUAS(?): Linda Quas, American Health Information Management Association.
MS. LEON-CHISEN: Nellie Leon-Chisen, American Hospital Association.
MS. PAISANO: Edna Paisano, Indian Health Service.
DR. EDINGER: Stan Edinger, AHRQ and staff to the Quality Workgroup.
DR. FERRER: Jorge Ferrer, Medical Officer at CMS.
DR. ORTIZ: Eduardo Ortiz from AHRQ and staff to the Quality Workgroup and the NHII Workgroup.
MS. FRASIER: Chris Frasier, AAPC.
MS. WILEY: Robin Wiley for the National Association of Dental Plans.
MS. BEBEE: Suzie Bebee, NCHS, CDC, and staff to the Subcommittee on Standards and Security.
MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics, CDC, and staff to the NHII Workgroup.
MR. BEBEE: Michael Bebee, American Medical Association.
MR. EMERY: Jack Emery, American Medical Association.
MS. AULT(?): Vivian Ault, National Library of Medicine.
MS. COLE: Margaret Cole, Food and Drug Administration.
MR. HITCHCOCK: Dale Hitchcock, Office of the Assistant Secretary for Planning and Evaluation, staff to the Subcommittee on Populations.
MS. MYRECK: Cathy Myreck, Quadriment Corporation.
MS. JONES: Dianne Jones, National Institutes of Health.
DR. COOPER: Leslie Cooper, National Institutes of Health and member of the Subcommittee on Populations.
MR. MANGE(?): Edward Mange from the Association of Matonna(?) and Chubb Health Programs, Washington, D.C.
MS. WALWORTH(?): Sally Walworth, Unicorn Medical.
MR. BEFARCUS(?): Josh Befarcus, JCAI.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, staff to the Committee.
MS. JONES: Katherine Jones, NCHS, CDC, and staff to the Executive Committee
MS. CRUTE: Sherree Crute, writer for the Populations Committee.
DR. JANES: Gail Janes, CDC, staff.
MS. HORLICK: Gail Horlick, CDC, staff to the Subcommittee on Privacy and Confidentiality.
MS. SQUIRE: Marietta Squire, staff to the Committee.
MS. ADLER: Jackie Adler, NCHS.
MS. WHITE: Gracie White, NCHS.
MS. KANAAN:: Susan Kanaan, writer for the Committee.
MS. WILHIDE: Cheryl Wilhide, Magna Systems.
DR. COHN: Thank you for all joining us. Let me just talk about the agenda for a minute. I think we're leading off this morning with a presentation on minority health statistics data and health disparities data. I thought I saw John Ruffin here who's our lead off speaker, but obviously he's not here right at this moment. Anyway we'll talk about that in just a second.
We are going to be making some changes to the way the agenda is structured. First of all obviously we're going to have this presentation, and then right after lunch the first issue will be to take up the action item we have for today, which is the privacy letter. So that will go before the presentation by Barbara Starfield on population health. Barbara Starfield will follow that presentation and as I said beyond that it's just reports of the Subcommittees, and there are really no other action items for today.
I am aware that some of you have to leave early for various commitments and that will at least allow us to have a quorum for the privacy letter.
I do also want to announce that this meeting will adjourn no later than 3:40 and may adjourn earlier but that's really hard to know.
Now the other piece that we really want to talk about which we deferred from yesterday was talking about issues that have been identified by the Populations Health Subcommittee as really going beyond that Committee that needs to be sort of reviewed and considered by the full Committee. Given that our speakers are not here right now, maybe we should take a couple of minutes and talk about that since this is a good time. And Vickie do you want to take the lead on that?
Agenda Item: Subcommittee on Populations Update - Dr. Mays
DR. MAYS: Yes, thank you. Part of what brings us to this point to have a discussion about this issue is when we met as an Executive Committee at our retreat, I'll give you the history and then I'll turn it back to you and you can decide.
At the retreat, one of the things that we talked about was the importance of bringing back the issue of population health as a perspective that a Committee as a whole would have. And kind of following on that, one of the things that has happened in the Population Subcommittee is that we've taken some time to kind of look back at the work that has been on our plate, some of which we have actually finished and some of which has just been talked about. But which is actually cross-cutting to Standards and Security, cross-cutting to Privacy and some of the other areas. So what we did was we actually sat down and looked at those things that other Committees thought were important, that they brought to us or that we thought were important and that probably need to be brought to others. So what I can do is either, if you'd like me to get started I can go through and try and talk about those issues or, what would you like me to do at this point?
DR. COHN: Good question. I think we have, Dr. Ruffin has obviously arrived so why don't we shift and then we'll get back to this hopefully before the lunch break if we can. Our first speaker is John Ruffin, obviously thank you very much for coming and joining us. As I understand you're the head of the Center for Research and Minority Health for NIH and Health Disparities, thank you. We really want to thank you for coming and joining us.
Agenda Item: Minority Health Statistics/Data and Health Disparities Date - Dr. Ruffin
DR. RUFFIN: I'm not sure where you would quite like for me to start, but I think perhaps the best place to start is to tell you who we are and what we do and, of course, from there any questions that you might have we'd be more than happy to answer those. I think it's very difficult to tell you about the Center in terms of who we are now without giving you a little bit of our history.
The history of the Center, of course, dates back to August of 1990 in which the Office of Research on Minority Health was created at the National Institutes of Health to address minority health disparities. There are a number of things that have happened in that interim between 1990 and, of course, just a year ago when the National Center Minority Health and Health Disparity was created.
And without giving you too much of the details in between, perhaps the best way to provide the detail in between is to tell you how those two entities differ. How the Office of Research on Minority Health and how we function then and how we function now as a National Center for Minority Health and Health Disparity.
When the Center was created in August of 1990, of course, the objective there was to follow-up on a lot of the data that had been accumulated, the Heckler(?) Report 1995 had given us a kind of a start, and of course HealthePeople 2000, 2010, and the data that had been accumulated there helped to really set the stage for what we were all about.
I guess we were beginning to reach the point where the main initiative then was to convince those of us at NIH and, of course, the nation as a whole that health disparity is real. I remember when I first became director and I remember when Harold Vamos came in as the Director of NIH, he was making his rounds to talk to all of his senior staff. I remember when I went in to see him he said what do you think is the most difficult part of your job? And I remember the response. The response is convincing people that when we talk about health disparities and we talk about the lack of minorities participating in solutions toward health disparity, that that issue was real.
I think the accumulation of the data that we've seen over the years, if it's done one thing at all, it's helped to convince us that it's real. And once we find out that it's real the question then is where do we go from here.
I think over the ten year period the approach that we took at the National Institutes of Health as an office was to simply ask a very simple question. And that is, what is it at the National Institutes of Health as it relates to health disparity that we should be doing but we're not doing? And so you can spend all of your time looking for the data but in fact when you know that the issue is in fact real you begin then to put solutions in place.
So we went around the country to some extent asking just that simple question. What is it that we should be doing that we're not doing? We had a very, very good fact finding team that accompanied us in 1990 around the country to ask that question.
You have to be careful when you put fact finding teams together because little do you know, I remember when we put our fact finding team together and you're dealing with an issue like health disparity. I thought at first that we could probably put together a team of about 15 people or so and go around the country and ask that question. It didn't work. Because when you're addressing an issue that involves African Americans, when you're addressing an issue that involves Latinos, when you're addressing an issue that involves Asian pacific Islanders, when you're addressing an issue that involves women's health, when you're talking about an issue that involves biomedical workforce, and you're talking about taking 12 undergraduate, graduate education, post doctoral education, in terms of training that workforce, you learn pretty soon that that Committee got pretty big. And I sort of remember the very first decision that I made as Director of the Office was to cut that Committee at about 53 or 54 members.
Now on the surface that seems as though that's not a Committee, that's a Congress. But in fact it worked out pretty good for us because of the people who were on that Committee. Little did I know when Donna Shalaha served on that Committee, at that time she was at the University of Wisconsin as the Chancellor there, and the late Barbara Jordan I remember was on that Committee, Ted Cooper, many of you know in this room was on that Committee. The Minority Institutions around the country was on that Committee as well as major research intensive institutions were on that Committee.
In fact I had my office, I thought about this on the Metro and I called my office and asked them to fax down a copy of that fact finding team report and on the back page of this fact finding team report it has the membership of that Committee. And I think you'd be quite impressed with the Committee in how we went about gathering the data. We didn't wait for the data to come to us, we knew something was wrong so we went out to get the data. And we went to the people who were most affected by the situation. So we asked the question.
We had three meetings, we had one in Arlington, VA, we called that our Eastern Regional Fact Finding Team meeting. And we only asked that one question. What is it that we should be doing that we're not doing? We invited everybody that we could to come to that meeting.
In terms of the participation we probably had close to 2,000 people that actually participated in the meetings. We had our Eastern Regional meeting, then we went to Atlanta and had what we called our South Regional meeting and then we went out West to San Diego and had what we called our Western Regional meeting.
What I did with that Committee, including Donna Shalaha and the others that were on that Committee, is that after the San Diego meeting I sequestered that group and put them in a hotel room for about three days and I said what have you heard? What is it that we should be doing that we're not doing? And what came out of that was this Fact Finding Team Report that ended up with about 13 recommendations as to the kinds of things we should be doing as an agency at the National Institutes of Health that we weren't doing.
To make a long story short, what we did was we brought these 13 recommendations back to the National Institutes of Health, tried to categorize those recommendations by Institutes and Centers, took them to the IC's and tried to convert those recommendations to good science. And in many instances we were able to do that.
Now there were certain limitations in what we could do as an Office. For example, as an Office we did not make grants. What we did was exactly what I just told you, we would gather those recommendations, bring them back to the Institutes, convert it to good science. We had dollars in our Office and what we would do with those dollars is once an IC said yes, this is a good idea, let's work with it, we would then transfer the funds to the IC in order to get that done. So we were partners. We always looked at our Office at NIH as an extension of each of the IC's. That system worked fairly well and it worked well for over 12 years or so.
So now we're a National Center. How do we differ in terms of how we work with the IC's now and how we worked with them then? Hasn't changed much, except there's one thing that we are authorized to do now that we weren't authorized to do as an Office in the Office of the Director. Most of you who are familiar with the operation of the Office of the Director at NIH, you know that the Office of the Director at NIH does not make grants. The IC's make grants. When we became a National Center for Minority Health and Health Disparity, the law authorized us then to make grants. So now as a Center we can make awards.
And in addition to that, I think there are two pieces here that sets us apart as a Center from when we were an Office. That's just one. That's one piece of it. I think the other piece of it that is significant that you perhaps would want to know is that as a Center, if you had asked me when we were an Office who are your constituents? Those 13 recommendations that were set up, who do they address? My response to you would have been African Americans, the Latino Community, Asian Pacific Islanders, Native Americans. When we became a Center, the base was broadened to some extent. Because now what we deal with is not only ethnic minorities, but the under-served populations as well. It's clearer in the law that there are individuals around the country, particularly in places like Appalachia, who suffer the same kinds of disparities as many minorities do.
The challenge in terms of training for many of the individuals in those regions of the country, similar as well. And so the law that established a new Center also gave us the authority to develop programs to address the needs of those groups as well. So the significance then of the Center is that the base is broader and we have grant making authority.
Now the fact that we have grant making authority, what does that mean? Does that mean that you're not going to work with the Centers the way you did in the past? No, that's not true. If you look now at how we spend the dollars in the Center, the way we do it is that there were certain statutory mandates that we must meet that's in legislation. I'll tell you about those because there are four significant things. Three of those are statutorily mandated and the fourth is what I call business as usual.
The law indicates that we are to set up loan repayment programs at the National Institutes of Health, which I believe is one of the best things since sliced bread. Essentially what that means is that we're in a position now to recruit a workforce. Those of you who are familiar with the loan repayment program at NIH, the AIDS loan repayment program, and how it worked, you get the idea right away.
When that program was set up not many individuals wanted to work on AIDS or do research on AIDS for that matter, all because of the misconception of the disease itself. But let me tell you, as soon as we said to them we'll pay back your loans if you do, it's one of the most popular programs at the NIH now. So to recruit that workforce took a carrot, that was a very significant carrot.
We believe in models at NIH and so we've learned from that model, and to recruit a strong work force for health disparity we plan to do the same thing. So we have loan repayments, essentially saying to those individuals around the country, white, black, blue, green, whatever color they may be or however they come packaged, is that if you do research on health disparity, we then, we have these loan repayment programs to recruit you. Up to $35,000 dollars a year, principal and interest, not a bad deal.
I wish I had taken advantage of it in another way, my son's a pediatrician and I paid his way through medical school, so I know something about what it costs. And I was halfway joking with somebody the other day when I said to them you know, the next time we do something innovative at NIH we need to create a parental loan repayment program, we can pay back some parents for all of the things that we put into our children.
But the loan repayment program is a great program and it's working very well. The first year in '01, we funded about 45 individuals from around the country. This year we funded about 153 loan repayment applicants from around the country. These are both individuals who are doing health disparity research as well as clinical research. Already if I can count that's about a 198 people around the country who are involved in health disparity research. They came from all disciplines, from the behavioral sciences, the biomedical sciences, epidemiologists, they come from all sources.
The difference between this loan repayment program and many of the others was that many of the others were focused almost exclusively on MD's. This is on health professionals, individuals in dentistry, individuals in medical schools, Ph.D.'s who are doing biomedical research that involve health disparity, so it's right across the board.
We didn't have a choice with that. The law says ye shall do this one, and we know what ye shall means, and so we put that in place right away.
The second thing that the law asked us to do is to concentrate a little bit on institutions as well as individuals. The loan repayment program is a strategy for dealing with individuals and getting individuals involved in health disparity research. The approach that is being used by the law to attract institutions is in two ways. One is the endowment, and we do work with HRSA. As many of you know, HRSA had already established Centers of Excellence. And the emphasis in our endowment program simply put, is good science and small endowments. And what we tried to do is come up with a strategy that will strengthen the infrastructure, the research infrastructure at those institutions that can participate with us in health disparity research so there is an endowment program underway as well. And keep in mind all of what I'm telling you about is only a year old, we're only about a year and several months old but the endowment program has been established.
The most significant program, the third one, is that the law also authorized us to put in place health disparities Centers of Excellence around the country. These Health Disparities Centers are very interesting because one of the things that we did is that we created three different initiatives in putting the Health Disparity Centers in place. So that those who feel as if they can participate, there are institutions, for example, around the country that want to participate in health disparity research but they're not ready to establish a center yet. They may have the potential of becoming a center, but not yet. We created a mechanism at NIH, which we call our R24 mechanism, which is really a planning grant. It allows institutions to plan Centers of Excellence over a three year period, we give them up to $350,000 dollars a year over that three year period to plan the execution of Centers of Excellence.
There's another cadre of institutions that we have observed at least that are ready to put centers in place but there's another problem there. The issue is that they still need support and they still need an agency like NIH to help them to develop in order to contribute in the way that we would like for them to. Many of you are familiar with the Cooperative Agreement mechanism, so we put that in place to sort of bring those institutions along. We simply mean that we're going to be watching pretty closely, we're participants, we're partners in this situation. You try to hire a director for your center and we don't think that that director of course meets our standards, we're going to get into your soup so to speak.
And then the third category, which we call our P60 categories, are research intensive institutions. These are institutions that are ready, poised, to get underway right away with Centers of excellence. We have all three categories to which institutions can self identify and apply. Those institutions did and we made about 20 or so awards around the country.
The interesting thing and the good thing about those is that I would bet you that, and I haven't done this so don't hold me to it, but just off the top of my head, I would say somewhere between 65 to 70 percent of all those Centers are actually partnerships between research intensive institutions and many of the minority institutions around the country, which we're ecstatic about, because we really believe that this is how to get it done.
We looked at our Health Disparity Centers the same way we looked at the comprehensive Cancer Centers around the country. Our feeling is that if the war on Cancer is going to be won, it's going to be won because the results are coming out of the Comprehensive Cancer Centers around the country. You follow the bouncing ball, that's where the money is. If you look at the billions of dollars that the Cancer Institute is spending, it's spending it basically at its Comprehensive Cancer Centers. We see that as a model, again, and our Comprehensive Centers, our Centers, the Health Disparity Centers of Excellence is where we think the kind of research will be going on that will help answer those questions.
The issue of data, quickly. The issue of data for us is that we haven't done this yet but our plan is to put out an RFA that would allow agencies, whoever, to apply for data centers. And those data centers would be responsible, or a data center, would be responsible for the gathering of information as it relates to the results that are coming out of all of our Centers, Health Disparity Centers of Excellence. It's not something that we've done but I just finished this morning putting the final touches on our CJ, on our Congressional Justification and in that we're certainly putting heavy emphasis on data collection and what we will do with that data once we gather it and the mechanism of collecting that data, so we're very, very sensitive to that.
Now those are the three things right? The loan repayment, the Centers of Excellence and the endowment. Congress said one more thing to us which I think is very important. It said you got to put together a comprehensive strategic plan. Let's not guess about how all of the Institutes and this new Center are going to partner. Put together a comprehensive five year strategic plan. So what we've done is we've put together a strategic plan which gets me to my fourth point. And my fourth point, which is called business as usual, is partnering with the Institutes and the Centers. Except this time, we have a strategic way of doing it.
In the past, I used to send out a letter every year to the Centers and the Institutes and say what is it this year that we ought to be doing that we're not doing? And they would send projects to us, we have an advisory committee that would come in and review the projects that had been sent from the IC's, and then we would see if it's good and then we'd go on and fund it. We don't have to do that anymore because we have a strategic plan.
I know five years out what NCI wants to do with the Center, and I know five years out what NHLBI and I are going to be doing. Also, many of the projects that we've already supported, we're going to continue to support those projects in partnership with the IC's. Some of you are familiar, for example, with the Jackson Heart study. Fantastic study between NHLBI and the Center. The way it works is that we know what heart disease is like in Mississippi. We also know that we couldn't get the job done, we could not recruit African Americans into those studies, because the study was run specifically by the University of Mississippi, there wasn't much involvement there. Minorities were not going to be involved in those kinds of things and couldn't get them to cross that line.
But let me tell you, as soon as we involved Jackson State, and as soon as we involved Tougaloo College, these are two historically black colleges in the state of Mississippi, and I said to Claude L'Enfant, I will pick up that part of the study which deals with the minority institutions, you pick up that part of the study that deals with the University of Mississippi and this will be our funding strategy. I'll let Claude come in and tell you how well the study is working now.
So we have to come up with these kinds of strategies around the country I think if we're going to really get into the issue of health disparity in the way in which we should. We're doing the same thing by the way with the Comprehensive Cancer Centers. We have partnered Universities, particularly our minority medical schools, with Comprehensive Cancer Centers around the country in pretty much the same fashion that I just described for Mississippi. Morehouse School of Medicine has partnered now with the University of Alabama Birmingham, with it's cancer initiative. Howard University in two strategic areas with Johns Hopkins. The University of Puerto Rico with Indiana. Mayo and Drew have partnered. So there are significant partnerships that have been followed.
What we need to do now to a great extent is to follow the data that is in fact coming out those various research initiatives so that we can in fact make that known to people around the country.
That's kind of a snapshot, so what I'll do is stop there and I'll be glad to answer questions that you might have about the directions that we're taking.
DR. COHN: John, thank you very much, it's been a really very interesting presentation. Do we have questions from the Subcommittee? Comments, Vickie would you like to take the lead?
DR. MAYS: Hi, I'm Vickie Mays and I actually Chair the Subcommittee on Populations. One of the things that we had shared with you is kind of the series of hearings that we've been having looking kind of at the issue of health disparities, particularly in racial and ethnic minorities. And kind of in those you can kind of see the issues that we're concerned about in terms of the collection of data. I'm wondering, because now you have an advisory board, have they begun meeting?
DR. RUFFIN: We had our first meeting.
DR. MAYS: Ok, I knew it just happened recently. And I guess I'm wondering a couple things. One, if you might be able to share with us the interests or activities or discussion that you all have had about issues of the collection of data for race and ethnic minority groups, some of the quality issues in terms of that, and how you see that relating to your disparity agenda. The second thing is to ask kind of a broader question, because I was listening as you were talking about this relationship with the other Centers at NIH. Sometimes what has happened in the past with other diseases or specific issues is that there's a coordinating committee that goes across the Institute that usually, the major Institute like, if it's AIDS it might be NIAID that does it, if it's women's health it might be the Office of Research on Women's Health. I'm wondering if you could also tell me, because the disparity issue is on everyone's plate across the Institute, as to whether or not your Office or some Office is going to be a coordinating, or have a PHSY coordinating committee.
DR. RUFFIN: Let me answer that last one first, because if you looked at an org chart for the new Center, you would see actually two advisory groups, you would see the advisory group that was mandated by Congress, the one that you just mentioned. But then you will also see a group that we call the Trans NIH Coordinating Committee. And again, I have to coach this in the context of the fact that we're still new and so we're still sort of finding our way.
One of the things that I did early on was to meet with all of the IC's to discuss that Trans NIH Committee first. And one of the things that we try not to do is to make the same mistakes twice. Remember in my opening comments I mentioned to you how huge the Fact Finding Committee was? You've got 27 Institutes at NIH and the advice that I got from the IC's when I went around to talk to them is that John, you may not want to have a Trans NIH Committee that's composed of 27 or so people, or reps from each of the IC's.
So we've actually decided to do, at least to try this model first, so that we're going to go with the critical disease areas first, so that may be about five or six individuals on that Trans NIH Committee first that will serve as advisory to me, NIDDK, Heart, Lung and Blood, Cancer, Infant Mortality and Child Health. So we may pick five of those. And then over time that picture will change. There will be times when we are interested more for example in workforce issues or training issues, in which case somebody on that Committee may go off and NIGMS may come on, because we're talking about various training procedures.
So yes, we have a Trans NIH Coordinating Committee, not as large as all of the IC's themselves, but that's how we plan to kind of start that issue off.
The first part of your question, in terms of the deliberations of the advisory committee and this kind of thing, we've only had time now to shake hands and get to know each other, and to talk strategy, and to talk, we're looking forward for example to our February meeting, where we can now get into some of the details of how we are going to do things. The first round of this advisory committee was absolutely swamped, and the reason they were swamped was because we wanted to make sure that when we go before Congress again and Congress says did you put the endowment program in? We want to say yes. Did you get the Centers of Excellence underway? We want to be in a position to say yes.
So what we have is a large portfolio of grant applications that had been reviewed and acted upon, but this committee of course had to give its blessings to. So we really didn't get into a lot of policy issues this time around but it's certainly on the agenda for us to look at in the future.
DR. COHN: Ok, thank you. Richard?
DR. HARDING: I want to apologize for the noise behind you, that's remarkable how you've kept your concentration during that and we appreciate, we don't do that to everybody. I would like you to ask you to talk just a little bit about the development of workforce and especially minority workforce. This is something that we've discussed in this group before, and it's so important, just wondered some of your thoughts, if you could expand just a little on that.
DR. RUFFIN: I think that when you take a look at this report, I think the Fact Finding Team was quite insightful. Because we asked, when we met we divided our deliberations into two parts really. We dealt with training and we also dealt with health issues. The training issues get to the heart of the question that you're raising because on the training side we were asking this Committee ten years ago, what is it that we should be doing that we're not doing? So we focused them on gaps, not the same thing that we were doing, but if you thought we need to do more of the same then that's fine. But what is it that we ought to be doing that we're not doing? And so many of the recommendations that came to us for example, were recommendations that got to the heart of this.
Everybody, of course understands the value of K through 12, and the issue is, are you interested in K through 12 education? Of course we are. But if you look at NIH's portfolio, you will find that we don't really do that much, very much with K through 12 education. Nothing to be embarrassed about. What we decided to do is the same thing that we were doing with the Institutes we would also do with other agencies. You know, for example, that NSF is the agency that does the lion's share of activities as it relates to K through 12 education, so we went to NSF. And we said we'll work with NSF the same way we work with Institutes and Centers at NIH.
And so essentially what we did and what we have been doing is that we transfer dollars to NSF the same way that we do with the Institutes. We only ask that we be responsible for participating in the life science part of it. Math and engineering we know is a focus, our focus is more towards the life sciences and we would want to be involved in the evaluation and that aspect of it, but we will work collaboratively and in partnership with NSF in putting programs in that K through 12 area.
Then there was another important gap that they identified for us. They said you know the other thing is that two year schools are not the same as they once were. That there was a time when people would go to two year schools because they wanted to bone up before they go to a four year school. We've missed the boat on that. It used to be an educational decision as to why one might go to a two year school versus a four year school. No longer. It's really an economic decision. Still an E, but a different kind of E, an economic decision. They go because it's closer and they go because it's cheaper.
And what we were missing was that very, very bright students were going there to work. And instances of very bright faculty were going there to work. The problem is they weren't making the transition to the four year schools. So what we put in place at NIH is a program that you might be familiar with, and if you don't I can send you some information on it, it's called a Bridges program. And what the Bridging program is it's a program designed specifically to bridge the gap from the two year institutions to the four year institution. Get them into the four year program. We've done the same thing as it relates to many of the HBCU's in the country, too, as a part of the new initiative.
Along that same bridging, most of you know that the terminal degree at most historically black schools in the country is the Masters degree. Very few of these institutions offer the doctorate. Well, we had to build a bridge there, too. A bridge from the Masters to the Ph.D. And let me tell you, a lot of institutions around the country, a lot of maybe governments around the country, that's very pleased with the bridging program there, because let me give you an idea of how that programs worked, and let me use a system that I'm quite familiar with because in my other life I was a Dean of a College of Arts and Sciences in North Carolina.
And the way that system worked is that, let me follow a student say who's an undergraduate at a historically black school. That student graduates with his or her undergraduate degree and then he or she applies for the Masters program at that same school, at that minority institution. When he or she applies for that Masters program, they are essentially screened by a joint committee made up of membership from that minority institution and let's say the University of North Carolina Chapel Hill, the research intensive institution. When the student is accepted into the Masters program at the historically black school, that student is simultaneously accepted into the Ph.D. program at UNC Chapel Hill, as long as that student maintains a good academic record.
Now that works out well for everybody because what happens is that when that student is taking his or her courses in the Masters program, the student can take courses from either institution. And the student can choose a major advisor from either institution. The real beauty of it is when the student transfers to the research intensive institution, into the Ph.D. program, that student can also work with a major advisor at the minority institution. The whole dynamics change there because the caliber of the work that the student is going to produce as a Ph.D. student compared to what they've been accustomed to at the Masters student is going to be at a different level. Publications are going to increase as a result of that.
When you look at the CD of an individual who is maybe employed at a historically black college in comparison with the time now, that CD of that investigator is going to look more like what NIH would like to see when we're inviting people to participate on our review committees and other kinds of things.
So the whole dynamic changes. So the question is well you don't have to jump and scream about a Ph.D. program, if your getting the same results with a creative program that allows you to do both. So from K through 12 to the two year schools to the others and you couple that with what I told you about the loan repayment programs, things start to build a significant workforce as a result of that.
MR. SCANLON: Dr. Ruffin, you mentioned the strategic planning process for the Center I think it was, and I think you're probably going through the first --
DR. RUFFIN: Iteration.
MR. SCANLON: Let me ask you just a question about that. Is that meant to be a strategic plan for the Center or is that meant to be a --
DR. RUFFIN: NIH strategic plan. Part of our responsibility is to coordinate and so we're coordinating the effort but that will be a NIH strategic plan. In fact when you look at the plan you will see all of the Institutes, but you will also see our plan in there as well, over a five year period. So our job is to coordinate that effort for all of NIH.
DR. COHN: John, I want to thank you, I think this has been really a very compelling presentation, I'm actually very excited by I think the information your sharing. It looks like you have a report that you probably want to make sure that we all get copies of, is that right?
DR. RUFFIN: I thought you'd be interested in the Fact Finding Report. It's old, but it sets the stage for who we are now.
DR. COHN: I think we'd be delighted to take a look at that. I know, there are other questions I have but I also know that you're going to have to leave momentarily. Vickie do you have any?
DR. MAYS: I'm sorry, I didn't realize he was going to have to leave, so can I ask a quick question? One of the things that probably will emerge from the findings of our hearing is recommendations that have to do with the research agenda around race and ethnicity and the collection of data and the elimination of health disparities. I'm wondering how this Committee can influence the direction of the activities that your Center is engaging in, or the best way to some extent to see if once we share that information it can actually in some way be picked up and implemented?
DR. RUFFIN: Our approach to health disparity now and in the very near future is exposed. Our plan is exposed. Our plan is the strategic plan. That's how we plan to deal with health disparity. When that plan was being put together we had it on our web-site and we encouraged everybody to give us input into that plan. This is a process that started even before Dr. Zerhouni arrived. It started way back with Harold Varmus and then from Harold Varmus to Ruth to now Dr. Zerhouni, so it's had an evolutionary process. We had it on our web-site, we asked for public opinions on it. We have stacks of opinions that high. But the thing about a strategic plan is that it is an evolving document. It means that every year that plan is going to be updated. And it would seem to me that as soon as that plan had been approved, a body like this, if you want to know what we're doing, you would see it. And secondly if you wanted to know how to influence that plan you would put, you would give us input. It would be on our web-site and we would look for input from everybody as we update that plan.
Where the strategic plan is now, we have done our job, and we have submitted that plan to the Department, and the plan is now in the Department, waiting to be submitted to the Congress. And as soon as that has been done and the Congress has approved it, then we have ourselves a strategic plan. We don't have a strategic plan until that has happened.
MS. GREENBERG: I just want to follow-up with one quick question.
DR. COHN: Sure, then we'll transition speakers.
MS. GREENBERG: Thank you Dr. Ruffin. I also found your presentation extremely compelling and interesting. I wondered, and it may be just something to think about and we can get back together on this later, but ways that sort of following-up on what Dr. Mays said, maybe ways that our Committee with its interest in Subcommittee on Populations and interest in data related to health disparities, might collaborate with your advisory committee or have some exchange of presentations or information. Because I think that could be very beneficial.
DR. RUFFIN: I would encourage it and I'm sure the leadership of the advisory committee would encourage it as well. One of the things that we're doing with the IC's and we could extend that beyond the IC's is that at our meeting, we've blocked out a portion of our meeting where institute directors come in and share their thought and vision with the advisory committee. And of course this could be extended beyond the NIH as well to a committee such as this. And I would welcome that.
DR. COHN: Super. Appreciate that. I also like Richard want to apologize John to you and I well in advance apologize to Nathan for the fact that we seem to be having a meeting in a construction site.
DR. RUFFIN: I thought it was Nate out there beating on the door. He's trying to distract me.
DR. COHN: This has been day two of our meeting and we've gotten so used to it that we're sort of screaming here, but we really do want to apologize. As you know as an advisory committee you have limited authority over where construction is occurring and when.
DR. RUFFIN: I understand. And I'm sorry that I have to run as well because I do have another meeting coming up but thanks for inviting me.
DR. COHN: We appreciate you coming and I have a sense that we're going to be having ongoing dialogue as more work is done by the Subcommittee on Populations, I think there's going to be sort of a need to have ongoing conversation because some of the stuff I think will require some research focus in all of this stuff as we identify additional issues. Thank you so much.
Our next speaker is Dr. Nathan Stinson, who is head of the Office of Minority Health. Nathan, thank you for coming. And once again we apologize because you're going to hear clanging behind you here as we go but it's the best we can do.
Agenda Item: Minority Health Statistics/Data and Health Disparities Data - Dr. Stinson
DR. STINSON: Thank you very much and first of all let me apologize for just arriving. I've been under the weather over the last few days and actually this morning my youngest daughter got very sick, so I'll be very honest with you. It took quite an effort to draft myself into the world of the living from the almost dead as the way I felt over the last three days. But I did want to come before the Committee to say a couple things. I'm going to be fairly brief as far as my comments because you're looking at the time constraints that you have, I want to make sure that I give everyone an opportunity to ask me any specific questions that they may have.
When I was to asked to come and talk about racial and ethnic data, it really strikes home to one of the most crucial aspects of this fight against the unequal burden that we have before us. It has been in the past and it always will be the position of our office that without collecting the pertinent information, you'll never know whether you have arrived at your end point.
But more importantly, you won't know when you need to change direction, you won't know whether or not the investments you're making are really leading you in the direction you want to go, and you won't know when you really need to zig when you've been zagging, as far as what you've been trying to do. And so we really look at this not just from the point of view of success/failure. Did you make a difference or did you not make a difference? But also from the perspective that to assure that you are going in the direction of success, you need the appropriate information along the way so you can make changes and adjustments that may be necessary to go in different directions to more likely reach the outcome that you're interested in.
So the collection of data as many people know and certainly many agencies in the Department know is something that is a drum that we beat very often, at meetings and also in review of publications, documentation, reports that come out of the Department.
Probably been about a year now that the Secretary made health disparities a real priority. And as part of that priority he really has charged the Deputy Secretary as the chief operating officer of the Department to make some things happen, in a Department that we all feel can have a tremendous contribution to close the gaps in different groups around the country. And the Deputy Secretary's Office has really looked to the Office of Minority Health to play a very prominent and significant role in their efforts to assure that the different agencies in the Department are focusing their attention appropriately on health disparities, are implementing their programs in ways that really address these issues. And are thinking very strategically about what is it that they need to do up front to assure and implement their programs that will help close the gaps among a lot of different groups.
So one of the things that we did was we really took a couple of steps back and looked at how does the Department do its work? Because until you sit through and figure out how the Department does its work, it's hard to figure out where do you have the opportunities to make an intervention, or where do you have the opportunities to interject a particular point of view? And when we did that it seemed as thought the Department, from a strategic point of view, does its work through the policy development, through building the science base, I know John talked a lot about that, linking people to services. HRSA and some other parts of the Department play a very significant role in getting people into the type of care that's needed. Partnerships with other organizations that work, not are just partnerships in name only. And finally, strategic communications. One of the areas that we think are very, very, very important that deserves a very thorough review on what we say, how we say it, and to whom we are sending the messages to.
Every step along the way we believe that there is an opportunity to talk about the importance in the collection of race and ethnic data, not just internally in the Department, but also in our discussions with state and local officials, and also private entities that they do do the same. I'm sure that, and I know there's been some previous discussions with the Committee on the work that the Data Council has done in the Subcommittee on Racial and Ethnic Date, and some of the recommendations that they have made as far as internally in some of the necessary changes that would be very, very beneficial in our system to assure that we have the information necessary. And we need to build upon those things. We need to continue to assure that those recommendations are things that become imbedded in what the Department does, what the Department does as a whole. So each place along that continuum of things we try to assure that there's appropriate attention before things get started to the collection of racial and ethnic data.
So interactions with NIH and other agencies around some of their research projects really go to the, I'll say questions but I don't mean it from the perspective that we're actually questioning the study designs by the real professionals at NIH or any other place that's doing appropriate studies. But just as a matter of assuring that there's ways to maximize the results of any of the particular studies that the Department is doing. And also assuring as we think through how broadly and the strategies for disseminating and translating some of the research results that we have, or some of the best practices that we have we assure that those disseminations, that information is as comprehensive and complete as possible so it really does hit and provide information to all the racial and ethnic groups that we have in the country as a whole.
Our office has quite frankly moved lock step with the Data Council in really advocating the things that they have come out and recommended for the Department to do. And part of that is because we feel very, very strongly that the task of the Data Council really is to assure that the Department has the best data collection system. And that the Data Council by its charge is the vehicle to motivate the changes that are necessary in the different agencies in the Department. And so many of our discussions, many of our recommendations, many of the ideas we have about things that may need to change, really all get funneled through the Data Council so that it speaks with as singularly a voice at least from internal operating divisions as possible.
As well as, I'm sure you're aware, for the past two years the Office of Minority Health established an advisory committee that's actually serving the function as an advisory committee on minority health for the Department as a whole, not just the Office of Minority Health so the scope is broader than just writing recommendations to the Director of Office of Minority health.
To date I have to say the Committee meetings have talked somewhat about the collection of racial and ethnic data but not a lot. The Committee in itself has not made any separate recommendations other than endorsing the ones that have been established by the Data Council very specifically. I think that one of the things that we have on the list of agenda items at their request for future meetings is really an update on where the Department is as a whole as far as addressing the recommendations that have been made, and in implementing the changes that the systems basically need in the Department to assure the collection of racial and ethnic data.
I'm not going to talk about, I don't think this is the forum because I'm sure you've not, it's not a good utility of time of talking a lot about our office very specifically. I think most of you know a lot and probably in many ways as much as I know about the Office of Minority Health over the years. But do want to just reiterate again that advocacy for the collection of racial and ethnic data is what we consider one of the prime directives of our office. One of the essential functions is to work with different agencies in the Department to assure as complete an accounting to all the groups as possible. And also to take the opportunity in our work with state and local officials and private entities to try to help them see the same benefit that we see from as most as complete an accounting as possible.
Let me just stop right there and let me just open up for any specific questions.
DR. COHN: Nathan, thank you for coming. First of all I want to say you obviously have rank since you got them to quiet down.
DR. STINSON: It's called pity, it's because I'm sick.
DR. COHN: Are there questions from the Committee?
Vickie?
DR. MAYS: First of all thank you for getting out of your sickbed to be with us. We appreciate it, and also let me thank you on behalf of the Subcommittee in particular for how supportive your office has been in terms of staff throughout the life of at least my tenure and I think before that, you've always been, your office has been very good about having consistent participation in the Subcommittee so we appreciate that.
Let me just ask you a question that has to do with how we might as, one of the things that you were sent was actually some information about the hearings and activities that we've been engaged in, and I know we're looking forward to coming forth with recommendations, and I'm trying to get a sense of how might this group in some way ensure that the information reaches your advisory group, reaches your office, and how we might be able to look towards the implementation of some of the things we might recommend.
DR. STINSON: That's a great question. I'm not sure that I can adequately answer, let me tell you why. My first gut reaction is well just send the information to me, that's all I need and that will help in some of the things we're doing. At the same time though what I don't, what I think is really important and certainly this, I think this Committee is certainly viewed in very high stature, is that it's done in a very systematic way and that it just doesn't come to me, and allow me to take that information and run with it. But that it also comes through the Department in a very deliberate way so that when we go and talk to the Deputy Secretary or the Secretary, there will already be a certain awareness of the issues, of the recommendations. And sometimes to be quite honest, if not most of the time, that gives me much more leverage than if I just go there because information is coming directly to me.
Now, having said that, and I believe that that's very logical thinking, in a bureaucracy it's not always easy to figure out what's the best ways to do that, what's the most deliberate way to move information along, to maximize the impact that it has. So that's the hard part of the question that I struggle with a lot on a daily basis. Part of what we're trying to do quite frankly is have regular meetings, certainly with the staff in the Office of the Deputy Secretary, and give them heads up on some things that may be coming through, some particular channel in the Department so that they have the opportunity to go as a look-out for the information to assure that it's getting all the way up to the leadership. So we're still trying to figure out how the best way to do it, I have to say though I can't diminish the importance of having everybody, or having the real leadership in the Data Council on board with what different recommendations, and not that there will always be agreement on everything, I don't mean that. But certainly my experience has been that the Data Council is prepared to weigh-in on whatever's available.
MR. SCANLON: If I could follow up Dr. Stinson. Actually Dr. Stinson has actually with the Data Council and with the leadership in HHS, that his Office has been very supportive of this Committee and the Data Council as well. And in fact, there is a fairly explicit strategy in HHS for how to approach race and ethnicity data, and I'll say a little bit about that in a minute.
I think the problem tends to be resources. Data collection is expensive, analytic work is expensive, and I think we probably have a near consensus, I think Dr. Stinson would agree, on where if we had the resources we would put them in terms of improving race and ethnicity data. At the same time there's an equal set of priorities for state and local data and a whole bunch of other things so I think we pretty much know and would be very receptive to other ideas in the Data Council and the Department about where to head. We really find that resources are probably our limiting factor.
But in terms of recommendations, Dr. Stinson I think would agree, you probably have to make your recommendations to the Secretary and you always send a copy to the co-chairs of the Data Council and Dr. Stinson would be involved as well.
If I could, Nate, let me just say, in terms of policy and strategy, and I think the Committee knows about this already, there's actually a fairly, first of HHS has a policy that race and ethnicity data is to be included in all of our data collections, number one. Number two, the standards, the LMB standards are the standards to be used in all of our data collections. Number three, in terms of data collection on gaps, we use over sampling in any of our surveys where we can to improve race and ethnicity information when it works as another sampling issue, as well as including it in all of the administrative data systems as well.
And number four, and this may be the weakest part of it all I think, and this is where I think the NIH's and the CDC's have to pitch in, the surveys and the administrative data only take you so far in terms of the groups and in terms of the subject matter. And special studies, targeted studies, I think are probably the only way to get there and those are expensive and it's hard for an NCHS or another statistical agency to put that together.
And then we need a fairly, we need to spend a lot more time on analyzing the data and disseminating the data that we have, including providing support for others to analyze the data that we make available publicly. So I think there's a fair amount of agreement on what needs to be done and where we want to go. I think resources are honestly, just as they are with everything else, are the limiting factor.
DR. STINSON: Let me say why this information is so critically necessary if we're going to get to the point of really closing the gaps. A couple of weeks ago I sat in the HealthePeople 2010 progress review for cancer. And one of the things that they did, that provided graphically a very important lesson, is that they really took the information to the point of looking at the disparities for each of the different cancers and showing that if the improvement in health, the improvement in the rates of some cancers continued along as they have had for the last several years, that some of them would hit the 2010 objectives, and some of them would miss the 2010 objectives. But what was very important was that when you stratified it out, it also showed that there in some cancers that we've got to change the angle of that curve in a much greater degree than in other cancers if we're going to reach those targets. And if you break that information out by race and ethnicity, you'll see a very similar type of pattern. Meaning that there are certain disorders, there may be certain groups where the change over time, the improvement over time in health, let me say it that way, needs to be greater over this next decade to reach those targets.
So it may turn out for example that this particular population, this disease, there needs to be an incredibly focused effort because that burden is so great in that population is contributing a lot more to the overall disparity between the different groups. And so getting that information is very, very important to make sure that we are indeed making the right investments to see the improvement.
And that goes back to what Jim said in that we're finally at a point where we're not getting disagreement around the table about these are the right type of investments, but we're still having difficulty getting people to open up their wallet or making it a high enough priority, when sometimes even willing to go in with a request to Congress if additional resources are needed. And I think some of that in my own personal view, there's a sense of, there's a cultural sense in this country of immediacy. It's more difficult making investments where people see that return further down the road than right up front. It's quite easy for people to make investments in a new vaccine for something, they see that benefit right up front.
So what we're trying to, one of the ways we're trying to articulate the value of making these investments is that we're basically saying that unless you know that information, you're just as likely or you have an increased risk of making the wrong investments up front. And therefore you're actually making losing or wasting the resources, only because you don't have all the information available to you before you make that decision.
And as far as I'm concerned, in no other place in our own personal life, would we make decisions that represented this amount of money or were this important without trying to gather all the information that's necessary. So that's one of our tactics in trying to get people to say we agree, we've got to carve money, we've got to find money, we've have to ask for more money, to overcome these resource concerns about collecting the right type of information.
Whether we'll be successful in that, you can ask me that question down the road, but that is a very specific position that we have because we think it's true.
DR. COHN: I think we appreciate the issues of finances especially in these tight economic times, the fact that the government hasn't even been able to completely agree upon a budget for this coming year probably doesn't help things either. So hopefully some of that will be resolved in the next year. Any final questions? Ok, I think this really is the final question, we've got to break for lunch. Gene?
DR. LENGERICH: Again, thank you for coming Dr. Stinson. You had mentioned your advisory council and you said that they have not specifically addressed data related to racial and ethnic minorities and their health and health disparities. I was just wondering if you could maybe give us a flavor of some of the issues that they may see as very prominent within their discussions within their thinkings because those may also give us some clues as to ramifications for data and data collection, so I was just wondering if you could maybe talk a little bit about some of the other thoughts or priorities that your advisory council is thinking about.
DR. STINSON: Let me just mention three things. There have been kind of a set of three to five that they've really dealt with over the past year and a half that they've really been meeting, minus some disruptions of time because of 9/11 and things like that. One has been health professions. And one of the reasons why that's been, that is a real priority is that there is just an incredible need to diversity all the health professions field. And clearly a lot of that stems from the fact that this nation continues to become more and more diverse as the years go by. And that's always been a strength of this country, quite frankly, never a detriment. But we're never going to get to a point where there's going to be any easy system to translate languages for everyone that may come through the door.
But one of the ways to help in that, not a solution, because it's a multi-pronged solution, is we also have to get a lot of the groups that make up this nation as a whole, more representative in the health professions field. So a lot of what they've been talking about and working through recommendations has to do with how to diversity the health professions.
A second area has really been border health. A lot of concentration along the U.S./Mexico border, but there has been some discussion about some of our "other borders" too, whether you look at immigration from the Caribbean into Florida, where they even look at some of the immigration that is occurring up in the Northwest.
The third area I want to mention has to do with bio-terrorism. And bio-terrorism from the perspective that there's a lot of discussion about the need to strengthen the public health infrastructure. I still don't know what that really means in the minds of the individuals who are signing all the checks, of the billions and billions of dollars that are going to be invested in the "public health system." And one of the things that the advisory committee is very, very concerned about is that the nation makes investments and assumes they're the right investments and assumes that it really has strengthened the public health infrastructure, and that's not what happens. In the next event that happens, again, points up to the fact that there is no real safety net, there is no web of the public health infrastructure.
And we feel very, very strongly that you can't really strengthen the public health infrastructure unless that's inclusive of community based organizations who do a lion's share of the work at the business end of public health and that's at the people who live in the communities. So that's been another area that's been very, very prominent on their discussions of how can the advisory committee influence how those investments are based and made.
DR. COHN: Well, Nathan, thank you very much. We appreciate you coming despite your illness and obviously take care of yourself. The Committee is going to adjourn for lunch. We will reconvene at 1:30.
[Whereupon, at 12:40 p.m., the meeting was recessed, to reconvene at 1:30 p.m., the same afternoon, November 20, 2002.]
DR. COHN: We'll get started if everyone could please be seated. I want to apologize, I announced at the beginning of the day that we would be taking up the privacy letter first thing on the agenda, and unfortunately those that are responsible for the privacy letter are not here and I don't see a privacy letter, so I think we will go back to the original agenda which starts with Barbara Starfield talking some about population health and then we will go from there to the privacy letter. My apologies Barbara, also those on the internet for the confusion, but we will just do what we can here. Barbara let them go.
Agenda Item: Population Health - Dr. Starfield
DR. STARFIELD: So I'm giving this talk today as a direct result of something that happened four or five years ago in this Committee. And we were discussing in the Populations Subcommittee something about population health, I don't remember exactly what, it was in the aftermath of the camera with the lens that Kathy Coltin and Lisa Paisoni had come up with. And we were talking about what would be population health measures and someone on the Subcommittee said well, isn't population health the sum of individual health? And that caused a gut reaction on the part of some of us and we've been thinking about how to frame the issue ever since then, and what I'm going to try to do today is frame the issue for you.
Ok, how is population health currently measured? You should all have copies of this in your place. Well here are some of the measures, that we measure population health, both nationally as well as internationally. Infant mortality rates, and if we're really sharp we will instead of infant mortality rates use neonatal and post-neonatal mortality rates separately because they have separate determinants, they have very different determinants, that if you want to make policy you want to distinguish the two of them.
Another way we measure it is mortality rates, or if we're really good at it we do age-adjusted mortality rates, but that's only mortality, it's not health. Or we can use cause-specific mortality, which has the same problem, it's only mortality. Or we can use life expectancy, but that's mortality, too. Or we can use years of potential life lost, and that in fact was the measure that the GAO came up with as the best measure of population health when it did the review probably five or ten years ago. But that's also mortality.
We can use disease occurrence or severity, and we could focus on all diseases, or target diseases, and this target disease approach is the approach that we mostly take, and in fact most of the countries of the world will set their priorities for population health in terms of specific diseases.
Or we could use self reported health, and we do do that and other countries are doing that now as well. Or we could use a summary measure of health, which is the DALY's, the Disability Adjusted Life Years, and that's what the WHO is recommending. It's got a lot of problems, there is now fair literature on both the ethical as well as the technical problems in measuring the DALY's, there's a lot of assumptions you have to make in using them.
Now which of these represent health? And I would say that I don't think any of them measure the population health, so let's go on and talk about what is health.
This is not my definition, this is a definition that was originally developed by WHO Euro several decades ago. I think it was suppressed by the whole WHO but it revived itself in the Ottawa Declaration 1986, and they defined health as the extent to which an individual or group is able, on the one hand, to realize aspirations and satisfy needs and, on the other hand, to cope with the interpersonal, social, biological, and physical environments. It is a resource for everyday life, not the objective of living; it is a positive concept embracing social and personal resources as well as physical and psychological capacities.
And I think this is a definition that's becoming accepted now as a basis, it's much more practical than the original WHO definition because you can see how you might measure some of these things whereas you couldn't see that in terms of the 1948 WHO definition.
Now the distinction between the focus on individuals and populations or sub populations is at the heart of the distinctions among the branches of medicine. And we actually have quite a problem with that in this country because we have this tremendous tension. I think we perhaps more than any other country, but other countries like France also have it, of the tension between liberty and rights of the individual, and the needs of the population. And we haven't been very good at resolving it and the manifestation in health is just a manifestation of a much larger problem that we have.
But let's go through how this distinction is at the heart of what we do. Clinical medicine asks what diseases might this patient have? That's mostly what physicians do. Clinical epidemiology, which had its birth about 30 years ago, asks what is the relative likelihood that this patient has, or is at risk for, this disease? And that's a relative risk approach. If you look at most of the articles in the literature, the clinical literature, they're asking about what's the risk that people will develop something, how much is their risk heightened by the fact that they smoke, by doing various other things, it's a relative risk approach.
Social medicine asks why does this patient have this disease at this particular time? That is, what is it that influences why people develop diseases at particular times? Community medicine goes one step further towards the population orientation and asks is this disease important? If so, how important is it, and to whom? So now we're moving from a relative risk approach that looks at the individual to a population attributable risk, that in the population, what's the salience of this health problem or disease in terms of population, that takes into account not only relative risk but how frequent something is in the population.
And public health then, one step further, asks what characteristics are most salient in improving overall health and the distribution of health in populations? That's just background. Now, if the interest is in reducing ill health and/or promoting health, reducing ill health or promoting health, attention shifts to understanding influences on health and the clustering of ill health. The first part of the talk is over and now we're going to talk about influences on health, we're going to come back to health at the end.
Alright, if you look at the ultimate outcome is health, we're talking now about the individual level. Influences on health at the individual level, health is the outcome. And health is influenced by genetic and biological characteristics, by socioeconomic characteristics, and by developmental health disadvantage, what happens later on in life. Now as the literature tells you, it's very heavily influenced by the health earlier on in life.
And then somewhat more distal, but still proximal, health is influenced by physiological state, material resources, social connectedness, chronic stress, and health services received. All this is buttressed by the literature, there's no hypotheses in here at all. And these in turn are determined by occupational/environmental exposures, by material resources, by social resources, by behavioral and cultural characteristics, by psychosocial characteristics, and by health system characteristics. Which are in turn influenced by the political and policy context. All of this supported by the literature, although this more distal influences have much less literature associated with them because there's been such a focus on the individual.
Now move to influences on populations. And we have as the outcome average health, this is what we're measuring when we measure mortality rates, the life expectancies, average values. But we also have something else that we're interested in and that's equity in health. Not only average health level, a number for mortality, a number for age adjusted mortality, a number for infant mortality, but what's the distribution of this characteristic of health in the population?
And in the last five years that of course has assumed enormous prominence in our discussion about disparities in health. This is the same diagram except for this outcome thing. Except I've given much more play to the more distal factors, I've left out that intermediary layer of things that occur at the individual level, that is material characteristics, psychosocial characteristics, and played up much more the social, occupational, economic and health policy characteristics which are determined by the political context.
And you might be interested to know that there actually is now literature, there's probably half a dozen articles now that have looked at health and differences in health by the political system, the type of political system, very interesting.
DR. HARDING: I'm just trying to clarify in my mind what political context is.
DR. STARFIELD: Well the way it's happened in the literature is they act, it's going to be a study that's coming out from the European Community within the next year that looks at the nature of governance, actual political nature of governance and it's influence through these intervening characteristics on health levels in different countries. I actually do mean political.
Ok, so far so good?
Now, if you think about health and influences on health in the context in which I've presented it, you begin to realize that these terms, penetrance, pleiotropism, and etiologic heterogeneity, which come from genetics, they've been only used in genetics up to this point, really have relevance for all, everything that bears upon health.
Penetrance is the situation where you have lots of well known causes of disease, documented causes of disease, but you don't have disease. You have incomplete penetrance. You probably remember that from your genetics courses. It's not true only for genetics, it's true for everything. Where you've got Japanese males have the highest smoking rate in the world but they don't get, their death rates are low compared to other countries in the world. You've got this cause but you don't have the disease.
Pleiotropism occurs when one cause can be associated with many diseases. It originally meant when one gene can be followed by many disease, but smoking, for example, is a cause that's associated with many different diseases.
Etiologic heterogeneity is when you get multiple causes, when any one of a number of causes can lead to a particular disease.
All of these occur in genetics and they occur in all the other influence of disease. And the reason they occur is because of the prior diagrams which show that there's interaction between all of the influences. So that when you have one adverse factor it's influencing another category of adverse factors so you have potentiation of vulnerability or on the other hand potentiation of resilience.
So far so good?
I'll go further to say that there is in fact no single cause of disease except in medillian(?) dominant disorders, which are for the most part very rare. There is no single cause of disease.
Now I want to talk about multiple diseases, the fact that disease is not randomly distributed in the population, that some sub populations are more vulnerable to diseases, to multiple diseases, than other populations. These are Dutch data, they come from general practice, several general practices in The Netherlands, and what you've got here is the practice population, the whole population of the practice, and you have the ratio's of the observed and expected co-occurrences of disease. This is the number of diseases that individuals in the population have. Zero, one, two, three, four, or more than four. Some people have no diseases, some people have many. People with many diseases are over here.
On this axis is the ratio of the observed to the expected. If diseases were distributed randomly in the population it would be one. If these bars were all one you would have random distribution of diseases in the population. And you can see, it's quite a deviation from one, and I'll point out a couple of things. Even though we know that the elderly have more diseases than younger people, this is by age, zero to 10, 20 to 39, 40 to 59, 60 to 79 and 80 plus on all of these bars. A greater proportion of the elderly have no diseases than you would expect by chance distribution of diseases. And the excess above what you would expect is greatest in people over 65. And greater in people over 80. There is something about that sub population that survives to 80 that makes them generally resilient to adverse affects of diseases, the adverse influences, and more resilient and less vulnerable.
Now on the other hand, when you look at people with four or more diseases, and we know that children have low rates of diseases, in fact a substantially, there's a very large excess of large numbers of diseases in a relatively small population of kids, that you can't explain by change distribution. This is like the ratio observed to expected is 15 to 1. So that the population with the lowest frequency of diseases in fact has the greatest concentration of diseases in a sub section of the population, and again that's because of all these recursive arrows in the influences diagram.
Now what does this bode for the future of health statistics? The imperatives for population health data. We never come to grips with how we're going to characterize health. We can't keep doing it by only mortality, it just doesn't fit with any of the definitions with health that we're coming to adopt. You have to think about the context of health, that chain of events that I showed you before. We have to think about co-morbidity, we have to think about disparities, or as the rest of the world calls it equity or inequity in health, and we have to think about bridging clinical medicine and public health, because there's a big wide gap between the two in terms of what they focus on.
Now I'm going to go through some alternatives, these are basically from my perspective and from my experiences and they're suggestions. Alternatives for characterizing population health. We can continue to focus on diagnoses and diseases but we have to develop some kind of case mix, so we can deal with co-morbidity. We can't go on thinking of people as diseases or diseases as people, we have to develop some way of combining diseases so that you have morbidity burdens in populations, and I'm going to show you one way we have done that.
If we're going to go the DALY's route, we have to deal with some of the problems, the ethical and technical problems with DALY's. Or we can turn our attention to developing profiles of health derived from combinations of separate domains, and I'm going to show you an example of that that we've been working with in a minute.
First the morbidity burden, where you take diseases and you combine them in ways that you can characterize each individual and subsequently sub populations or populations by combining them in various ways. This is what we call the ACG, the Adjusted Clinical Groups method of doing that, and I'm not going to go through the whole thing. This is what it looks like, in fact this isn't even what it looks like, it's really more complicated because this isn't the most current version we've been working with.
But what we did is we divided all the diagnoses, all the codes in the ICD into 32 categories. Five basic categories, acute, acute likely to recur, chronic medical, chronic specialty, and psychosocial diagnoses. And we've combined and recombined those into various groups, we cursively partitioned them according to empirical interviews and empirical data to do that, and you end up with something like between 85 and 100 cells that characterize morbidity burden of individuals and by aggregation of sub populations and populations. You can actually take an individual and say they've got ten or more diseases, four of which are serious and will take a lot of resources. It's technically feasible to take all the information we have just using the international classification of disease, clinical modification, in fact you don't even need the clinical modification, other countries have done that with just the ICD, and put individuals in the population into one cell that describes the burden of morbidity, they've got years of just diagnosed conditions. And I actually can give you a web-site for that if you want more detail on it, http://acg.jhsph.edu.
And now I want to describe to you the profiles. We've been working children's data, self reported children's data from ages six through 11 and 12 through 17, and we've characterized health in four domains, diseases, discomforts, which includes disabilities, overall health, which is perceived health and self esteem, achievement of social expectations, resilience and vulnerability. And the disease is one we characterized by the ACG system which I described to you before so we do that separately. You take the other dimensions and we divide them into several groups. It's norm data, you can characterize individual children as to whether they are in the lower third of the distribution, the middle third of the distribution or the high third of the distribution.
And then characterize them in one of 13 profiles. Excellent health, which is excellent health on three of the four domains that we use, with no domains of poor health. Good health is at least average health on all domains with excellent health in no more than two domains. Just generally perceived poor health, just high discomfort, just low resilience, just high risk, and then combinations of those, and then we've got the worst health group, which is poor health on three or four domains. And with this you can get at a glance a picture of an individuals health or a picture of a populations health.
And I can tell you that in children and in adolescence, just about half of kids fit in A or B, and a substantially greater proportion, something like 20 percent actually are in the worst health domains.
Here we've combined, we've left out mortality, we've combined various aspects of morbidity, more going towards the kind of thing that the Ottawa definition calls for. So we can do this. We know we can do that. The question is, is it worth in the future working towards expanding this for the rest of the population and other age groups?
Now social and political context, there are few existing studies, I told you there are about half a dozen by now, and a big one is about to come out from the European Community, but it's an important future direction to understand the variety of influences on health.
We actually have good measures, it's been an eye opener for me to read these studies. There are lots of data sets that actually give you information on social and political context. There's a center in Washington that does women's health data and they give you information on voting rights of women, on relative salaries of women, relative to men, I mean there are a lot of data out there on context, all of which now can be incorporated into studies.
Co-morbidity, a big imperative, I think. Diseases, risk factors, and influences are not independent of one another. Data systems have to allow for coordination among different providers and types of providers.
Understanding disparities. To understand disparities you can't use control variable. You can control for race, you can control for ethnicity, you can control for income, you can control for education, but you understand nothing if you do that. You have to stratify analysis rather than adjust statistically for things and there are very few prototypes of this kind of thing in the literature. Because it's almost certainly that that pattern of influences is going to work differently in different populations and you'll never know it unless you study the populations separately.
Data systems for bridging public health and clinical medicine. The boundaries between public health and clinical medicine are increasingly fluid. Data systems are needed to coordinate the activities of both sectors.
And this is the last slide. Population health is not the sum of individual measures of health because first of all it is individual measures of health don't represent health. We showed that in the first slide. And second of all because of non-random distribution of health and influences on health, age and gender distributions, political, economic, social, and environmental contexts. So I don’t know whether, well the person who asked the question about isn't individual health system, is the population health the sum of individual is not in the room. I hope I've convinced the rest of you who might have said well, yes, it's not the sum and it's at least not the sum for two reasons.
DR. COHN: Barbara, I actually want to start off with first of all thank you, I feel like after all these years of knowing you here I finally see you as a professor. I feel like I was just in your classroom for the last couple of minutes. One question I have for you as I look through this, I may actually sort of struck almost the Committee's next area to look at in relationship is almost the genomic theory of disease because I can see as much, you're trying to link population health to public health and as I look at all of your data and all of that I'm sort of struck that I think what you're beginning to describe is that there may be very, very significant determinants that have nothing to do with even the model that really explain why you get these distributions that you have and that we're only now learning about. So it reminds me of the old story about people used to think TB was caused by damp weather, and therefore you sort of made sure that nobody was in damp weather. And I'm sort of wondering, does what I'm saying make any sense to you or do you think I'm off in a very odd direction?
DR. STARFIELD: No, I think that that's exactly the point. All those terms, penetrance, pleiotropism, etiologic heterogeneity, right out of genetics. We never use them for anything else and yet they make absolute sense in diseases we don't think of as primarily genetic. The only diseases that are primarily genetic are the ones that are medillian dominance.
DR. COHN: That we know of so far. Well thank you. Jeff?
MR. BLAIR: Professor Starfield, please help me understand what the ethical problems are with DALY's.
DR. STARFIELD: They weight things, and they weight things in ways that are not, they don't weight children's issues very highly. That's the major ethical issue is how they weight the disability. The technical issues are enormous, and they all surface in the World Health Reports 2000 criticism.
DR. HARDING: Barbara it's very interesting. Could you help me take it a step further into some kind of futuristic policy? You're talking about kids who are not a homogeneous group, that you have a small group with lots of illness, right?
DR. STARFIELD: Much more than you would expect by chance.
DR. HARDING: Much more than you would expect. So whatever, five, ten percent have a great deal of the illness in the country. What do we do? What are the policies that are necessary to not neglect the "well" but to some how or other set up the programs for the ill?
DR. STARFIELD: Well, I think like Jeffrey Rose(?), if you want to cure a problem you don't focus on the extreme, you try to shift the average, because in shifting the average you'll shift more people away from the extreme than if you only focus on the extreme. And it's also probably more efficient to focus on population health as a population and bring the extreme into the mainstream. My main interest of all those determinants is in the characteristics of the health system.
And I think there's a huge amount of evidence that the characteristics of basic care, primary care have a tremendous impact on health on a population level. You can influence by primary care a lot more people than you can the specialty care. So that's why I focused virtually all my professional attention on bringing to countries' attention the fact that they can't neglect their basic level of health services in favor of putting it all into hospitals. But that's just one, I think that what you want to do is set up your system so that it provides good health care for everybody, and then within a particular facility you tailor the services to that part of the population group that needs, that has particular needs. I don't think it's useful in terms of policy to segregate them all.
DR. NEWACHECK: Just a clarification. On the children's data that you mentioned about having a higher rate of observed than expected --
DR. STARFIELD: Didn't you publish an article on that once or maybe we published it together, we did.
DR. NEWACHECK: No, you had a different thrust. But I'm just wondering where does the expected come from?
DR. STARFIELD: The expected just comes from taking the average prevalence in the population and kind of attributing it to the population.
DR. NEWACHECK: Another question I had about clarification is because this Committee is, or the Subcommittee in particular is focused on disparities, and disparity data, can you talk a little bit more about the distinction between stratified analysis and statistical adjustment?
DR. STARFIELD: Statistical adjustment is when you're looking at the relationship between various influences on health and you want to control out things, like race, ethnicity, socioeconomic status, but you'll never understand the fact that the pathways may differ in sub groups if you do that. You've got to look at the determinants against health group by group.
DR. NEWACHECK: So stratified meaning to separate out, say blacks from --
DR. STARFIELD: Do the analyses separately.
DR. FITZMAURICE: Maybe two thoughts. One thought on that graph you showed about the younger people are sicker and so the cure would seem to be keep them alive and they'll get better. But might it have been that they were screened more when they're young? And when you get older you aren't screened so people don't know that you have those diseases?
DR. STARFIELD: These are cross sectional data, this isn't longitudinal data, this isn't people as they age. This is describing a practice population, the distribution of diseases in that practice population.
DR. FITZMAURICE: So it's not just being screened at school, it's all of these people were screened when they went to the doctor for some reason. The second thing is that I tend to think of the difference between individual and population or public health as, as an individual there are things that affect my health but I can control for them and I can eat better, I can do a lot of things, and I didn't get a flu shot so that reduces the probability, but I can't control the external affects, that is if everybody here didn't get a flu shot and I got a flu shot, I still have a better likelihood of getting the flu. But if everybody had a flu shot then we all have a better chance, so population health influences my individual health.
And then secondly some of the tools that are used on the population are cheaper per person than the tools used for me. It may take some of your time to educate me about the right way to do things, you can get in front of a television, speak to a population, and get a bigger bang for buck, economies of skill for your time and the expense of the equipment if you deal with a population rather than if you deal with individuals.
DR. STARFIELD: You're thinking of the intervention side and I agree with you.
MR. SCANLON: Back to the question of the data to support this kind of analysis, the data systems that support this. It looks like some of the data that would support this is sort of population survey data. But what other kind of data?
DR. STARFIELD: Morbidity burden, that's clinical data, that's all clinical data.
MR. SCANLON: But what would be the source of such --
DR. STARFIELD: Claims --
MR. SCANLON: Claims data --
DR. STARFIELD: All of our work is a claims.
MR. SCANLON: But that isn't the ideal source.
DR. STARFIELD: No, no, no, but the way we get it now, we don't have the electronic medical records.
DR. SHORTLIFFE: One of the distinctions that I didn't see you make explicitly was the difference between disease oriented in health versus preventive health, and I was just wondering if you had any comment upon that within your model. I mean it's implicit in some of the things that you're looking at.
DR. STARFIELD: It's implicit. I actually don't find that distinction useful. Just like I don't find the distinction between chronic illness and acute illness terribly useful. I mean there's a gradation, and what's preventive for one thing is the result of something previous to it, and we've got all kinds of terminology for dealing with that, but I basically just don't think it's useful. I haven't seen any utility to it. Of course this all means you recognize needs as early as you can. Is that prevention? I don't know.
DR. SHORTLIFFE: I was thinking of it as a distinction and maybe kind of the way we slice our institutions and our care system.
DR. STARFIELD: The whole point is to recognize needs as early as possible even if it's before the needs are manifested.
DR. COHN: Ok, I think if we can get final questions and then we'll move to the next phase.
DR. MAYS: Barbara if we go to your influences on health at the population level, do you think it's possible that, or is it something we should be thinking about advocating that we actually in some of our populations based data be able to collect the kinds of information that would allow us to fill this chart out? Or is it that the goal is that we try and find this information from other sources and blend it in?
DR. STARFIELD: I think we're most of the way there already. I think that most of the data are there. We don't know about them. I only recently found out about that women's databases. Enormously useful. We as health researchers don't often use them, we don't know about them, and we don't see their importance. So I think it is something that the committee should do, and I don't think it's going to be a huge amount of work to do it, because the data are there. Not all the data are there, but we're well on the way.
DR. COHN: Well Barbara, thank you so much.
[Applause.]
DR. COHN: Certainly for me, out of all of this stuff, I know it's sort of an odd comment, but I do think genomics is another piece of this puzzle, even though we don't tend to think of it as part of population health, but really it is. I'm just sort of saying I think we need perhaps a briefing at the next meeting that maybe looks into that aspect in how all that fits together, and if others have additional thoughts of that as we continue to explore this area we will obviously have additional speakers at the February meeting.
Now we're moving into sort of the final phase of the discussion at this point. I will warn people that are bringing forward letters that we are very close to losing our quorum. And maybe in search of perfection we may find that we have perfection but have lost it all at the same time.
As I understand there are no letters that are currently been, have been completed and copied for the Committee. Privacy letter? Ok, great. This is the privacy letter, ok. So the first action item is the privacy letter and the second piece is the letter coming out of the Subcommittee on Populations, and then right following that is the discussion of overlapping areas. Is that? So we would certainly ask the Committee members, especially those who are current members, not necessarily the retiring ones, who can't vote, make sure that you try to hang on for the votes.
Mark, do you want to go forward with the letter and how would you like to do this?
Agenda Item: Subcommittee on Privacy and Confidentiality - Action Item - Mr. Rothstein
MR. ROTHSTEIN: Certainly. I think what might be most efficient is for me to highlight for the members of the Committee the areas in which there were changes made from yesterday's draft and let people sort of think about those in context, if that's ok with you Simon, rather than going through each paragraph.
DR. COHN: Yes, I think we can do that for the letters, since the letter, we may need to go through the actual recommendations, we need to at least list the recommendations as they are.
MR. ROTHSTEIN: Well, there's only one change in the letter itself, and I want to call that to your attention. It's on page three in the paragraph that begins complete versions. We added after the second sentence, the sentence that begins the NCVHS, and I'll read it for the benefit of people who don't have copies. The NCVHS is aware that the Department and OCR in particular have limited resources to accomplish the extensive recommendations set forth in the attachment. Given these constraints we encourage the Department to marshal all available resources to provide OCR the funds and staffing necessary to accomplish the massive technical assistance, outreach and education efforts needed in the upcoming months to ensure successful privacy rule compliance efforts. So that is an addition that is based on the discussion of yesterday.
DR. COHN: I guess I should ask the full Committee, we're obviously trying to do this in an abbreviated fashion, recognize this is an eight page document. Is everyone comfortable with having spent a while going through the actual text of the letter yesterday? Ok, good. I think really the heart of this is really all the recommendations.
MR. ROTHSTEIN: Let me highlight for you the changes from the last draft that you saw. And the first one is in Roman Numeral I that used to be called organization, it's now called coordination and collaboration. The text is different as well as the bullets, so I'll read those very quickly. Under coordination and collaboration, Department wide efforts. Problems in coordinating agency efforts already beginning to surface are likely to intensify as all of the elements of Administrative Simplification come on line. It is difficult for the public to understand the lines of responsibility at HHS, and a source of confusion and frustration is the inability to get integrated answers to HIPAA questions.
And the two recommendations are OCR and CMS need to improve coordination of education, outreach, and technical assistance. And second, the Secretary should implement any organizational steps necessary to promote essential coordination of Departmental implementation activities. This is a new and slightly rephrased version of the first one that was more prescriptive and this raises the problem that gives more flexibility to the Department to resolve it.
DR. FITZMAURICE: Do you want to change the title? Because I noticed that the title says for Implementing the HIPAA Privacy Rule, yet this first recommendation seems to be broader than the privacy rule, particularly including CMS in there.
MR. ROTHSTEIN: You're talking about the overall title for the document?
DR. COHN: No, I think it's fine leaving it the same.
MR. ROTHSTEIN: This is one of the very few recommendations I think for only probably two, this one and one I'll highlight later that really go beyond CMS or where there is a Department level set of recommendations regarding resources.
The next major change I would say, and I'll spare you the minor language changes, is in number II, it is Roman II, Arabic two. The third bullet, and I'll just read it and it reflects some changes. OCR should focus technical support on "fragile providers," including community health centers, rural physicians, Medicaid physicians, advanced practice registered nurses in rural areas, health care providers treating indigent populations, and sole or small group practitioners. Many individual practitioners, those in small groups, and other providers outside of acute care hospitals have taken few, if any, steps to comply with the privacy rule. These fragile providers often lack the time and resources to achieve compliance.
That is basically a thought from the original one but slightly refocused.
DR. COHN: Comments, questions?
DR. FITZMAURICE: Just a thought, I wonder if any provider that can show that he or she is fragile, should they get the same treatment?
MR. ROTHSTEIN: Well, that's an interesting in light of one of our last provisions dealing with tax credits, and we left that somewhat vague as to how you qualify as being fragile. But from the testimony that we received, there are certain groups that we've identified here that should be the primary focus for outreach and technical assistance efforts although we didn't want to foreclose any group from being considered fragile or in need of special support.
MR. HOUSTON: I have a question also. We talked about health care providers treating indigent populations, I sort of assumed that we were also speaking to acute care facilities or hospitals, and yet we seem to exclude them below. It seems to be a slight conflict.
DR. COHN: I guess it's a question of how you define providers, and in the Medicare world of provider that actually includes institutions that we probably ought to, especially under the issue of health care providers treating indigent populations, we might say providers and facilities or something like that.
MR. HOUSTON: Right, but then we sort of exclude, they're talking about providers outside acute care hospitals further down in that paragraph. I think we talked about providers treating indigent populations we were as much speaking about acute care facilities that are providing that care too aren't we?
MR. ROTHSTEIN: Well, it's true that a great percentage of indigent health care is provided by large institutions, but the fact of the matter is that at our hearings, the large institutions, even though they may need some support, have by and large heard of HIPAA, heard of the privacy rule, and are undertaking some efforts at compliance. When you get to what we call the fragile providers, many of them have never heard of HIPAA, don't think it applies to them, don't have any technical support or staff to comply, and that's why we thought that, not to the exclusion of other providers, but as sort of first cut for efforts we should focus on the group that we mentioned.
DR. COHN: Mark, I think I'm actually going to recommend, and this may solve the problem, maybe that whole sentence needs to be removed. As I was reading through it, it appears that it doesn't add anything. Where it says many individual practitioners, we're talking about fragile providers and then suddenly we're off talking about something slightly different, and taking that whole sentence out would actually remedy the situation here. Friendly amendment.
MR. ROTHSTEIN: Fine, I have no problem with that.
DR. COHN: Or if you wanted to simply add to the last sentence instead, these fragile providers often lack the knowledge, time and resources to achieve compliance, knowledge sort of throws in the fact that some of them simply don't know.
MR. ROTHSTEIN: We'll just add the word knowledge.
DR. FITZMAURICE: I'm still not sure what fragile providers means. Does it mean providers that don't make a lot of money? Or does it mean providers that treat the indigent and other special populations?
MR. ROTHSTEIN: Both.
DR. FITZMAURICE: So that we should ask a provider who wants special technical assistance to send in last years' income tax return.
MR. ROTHSTEIN: No, no, no, this is not provider triggered. This is OCR initiated efforts to try to reach people as a group who are really not making sufficient strides to implement the privacy rule.
DR. FITZMAURICE: I just have a concern with calling them fragile, if you want to give special attention to providers who treat certain populations, I think that can be pretty clear. But I don't know in what sense they would be deemed to be fragile as opposed to non-fragile providers.
MR. ROTHSTEIN: It was a term that was used by what we used to call fragile providers at our hearings, and if that is a term that kind of doesn't go down to smoothly we can just take that out.
DR. COHN: Safety net providers?
MR. ROTHSTEIN: In fact, we referred to that, we used that term in the letter, safety net providers, and so if that's better than we can, ok. Any other comments?
Let me say that the next area where there was a change was in number three in defensive practices. That is Arabic three, and that was mostly an organizational change, it was really nothing substantive, we changed some things around, added bullets, and added text to make it consistent.
MS. KAMINSKY: We also responded to the Committee recommendation to link that to adverse outcomes.
MR. ROTHSTEIN: Correct, the last sentence of text, thank you, before the bullet was added based on a comment yesterday.
The next major change came in number seven, training --
MR. HOUSTON: Before that, just typographically, I thought we were going to spell out FAQ's.
MR. ROTHSTEIN: Well we considered that and we did not, we decided not to spell out anything that had been used in the letter and spelled out in the letter and than abbreviated it in parens after the first time we used it. So that would include OCR, HIPAA, HHS, all those other things as well. Yes, the Subcommittee did agree to spell out FAQ's originally and then we made an executive decision to, but I knew we'd be caught on it.
The next issue is training, where in the original version there were three bullets, and we moved the first bullet into guidance, it was --
MS. KAMINSKY: No, the other version didn't have three bullets there because the whole organization was completely different before, so the version that the Committee saw yesterday wasn't clumped like this.
MR. ROTHSTEIN: Oh, it wasn't? So I'm referring to another version. There's been too many versions.
MS. KAMINSKY: Unfortunately they're all in my head.
MR. ROTHSTEIN: So, was anything done on training?
MS. KAMINSKY: It was just a big reorganization with making less recommendations and pulling more into clusters and groups, so that's the only significant changes.
DR. COHN: And Stephanie we do want to thank you for reducing it from 40 to 22, so thank you.
MR. ROTHSTEIN: That's right. An interim version was changed. So from the version that you say, lots of things have been changed. I'm playing catch-up as you know, I was somewhere else. That may or may not have been a good thing.
Stephanie why don't you take them through this so I don't screw up any more?
DR. FITZMAURICE: Could I ask a question about the trainer?
MS. KAMINSKY: Yes, you do that while I figure out what I'm going to say.
DR. FITZMAURICE: OCR should sponsor train the trainers programs. The one right above it talks about training regional staff. Does this relate to the private sector in any way or should sponsor train the government trainers?
MR. ROTHSTEIN: This would be private sector, so do you think we should indicate that?
DR. FITZMAURICE: Yes, because it doesn't indicate the private sector being trained.
MR. ROTHSTEIN: Ok, so OCR should sponsor train the trainer programs for the private sector?
DR. FITZMAURICE: Something like that, yes. To promote understanding in the private sector, or to promote training of the private sector.
MS. KAMINSKY: It was easier when you were doing it and I was just catching you. Nothing really here, again I just think a clumping of issues.
DR. COHN: Are you talking about compliance assistance?
MS. KAMINSKY: Compliance assistance.
DR. COHN: At least name the areas.
MS. KAMINSKY: Compliance assistance. I don't think there's anything there that's significant except for the fact that we wrestled a little bit with the recommendation on providers who did not want to become electronic, and I think that we concluded not to include that, right?
MR. ROTHSTEIN: Correct. We raised in the letter itself the issue of some providers sort of backing up to go back to paper, although we didn't quantify that because we couldn't. We just raised that issue for the Department and it really doesn't lend itself to any recommendation. In theory, if compliance assistance is available and it's easier to implement the privacy rule, then overall that may influence the decision of whether an individual provider becomes electronic or continues in an electronic. So the inability to translate that into any specific recommendation caused us to just delete that.
DR. SHORTLIFFE: If you'll remember I was pressing on this one yesterday. It seemed to me that the place to put this was under A in item 18 about guidance, it's a guidance issue. There you've got covered provider questions and in a sense we're talking about answering questions for people about whether they want to be covered providers in a sense and having raised it in the letter I don't think it should be totally ignored. It's an important point.
DR. COHN: I think obviously for the Subcommittee on this one, I think the Subcommittee looked at the issue and felt that the body of the recommendations addressed that issue and it was not a, it wasn't like there's a single answer for somebody considering whether they should be electronic or not. It's more a question of providing them better support, giving greater confidence, and in education and information, as opposed to a single FAQ saying geez, why should you be electronic, which seemed to be sort of an underwhelming response to that.
DR. SHORTLIFFE: Well I agree that the rest of it is important to answering that question, but I think an FAQ about reasons that you shouldn't go back to all paper, the downside of making that decision in order to avoid being a covered entity is a kind of question that might not be a bad idea to have explicitly addressed.
DR. COHN: I guess maybe I'm a little confused. I thought it was part of the ASCA rule that unless you were a provider that somehow met HHS guidelines that as part of ASCA you actually had to submit things electronically to Medicare, and obviously the Secretary, so the question is, is there more than that that's needed do you think? That would be the question I'd ask.
DR. SHORTLIFFE: So maybe I'm reacting to an anecdotal story from one person who testified at one hearing about how they had reverted from electronic records. But it seemed like such an extreme response to HIPAA that not to acknowledge that it has happened in our guidance statement seems like, it's not a big deal to include it, and I believe it could be addressed, and it just sort of shows that this is a really bad move.
DR. COHN: I defer to you, Ted, on that one.
MR. ROTHSTEIN: We originally wanted to include something to that effect, but we had a hard time coming up with what guidance we should provide because truth be told, providers have a legal right to do that, should they want to, and I thought it would be hard to recommend to the Department that they issue guidance trying to make the case why individuals should do that and it's a lot easier to recommend that we provide technical support to facilitate better.
DR. SHORTLIFFE: It's not worth wasting more time on I guess, it's not that big an issue. It does seem like we spent a lot of time as a Committee trying to make the case for increased use of data systems and moving in the direction of electronic communications, electronic storing of patient data, and if we can't in a concise way put together an explanation for why we think it would be unfortunate if people interpret HIPAA as in any way being a disincentive to move in that direction, then I wonder why we find that so difficult.
MR. ROTHSTEIN: There was a provision in the draft letter that called attention to the fact that one of the goals of Administrative Simplification was cost savings, etc., and I was informed that that was deleted as a result of the Committee's deliberations yesterday. So that would be the place to make the argument and we tried to make that and it was taken out.
DR. SHORTLIFFE: I think ignoring costs you can still make strong arguments. However, we are really nitpicking here, so I will not make a big point of this if people feel uncomfortable with it.
DR. COHN: I think maybe what I would suggest is if this feels like it might be a better place to put it might be in our next letter around actually the administrative and financial transactions. We don't have one today, I suspect we will have one shortly. And to me that may be really the place to make that argument as opposed to the midst of a privacy text.
MR. ROTHSTEIN: I'm willing to settle for that. I mean I agree with what you're getting at, it's just a question of producing something that would be valuable that the Committee would support. Stephanie?
MS. KAMINSKY: I don't think there was significant changes in the outreach section except for just again, clustering the items that were crying out to be bulleted. And similarly with the consumer section, I mean there were some slight changes including in number 11, bullet one, adding language about appropriate reading level and translated, this is the one-page handout recommendation and based on Committee comments added text about appropriate reading level and other language translations.
And also similarly in bullet two, talked about pursuing distributions of such condensed information, materials to or this one page handout to not only Medicare beneficiaries but also potentially Medicaid beneficiaries from yesterday's comments.
For consumer education approach, I don't think that there were substantive changes, again, just reorganization there. Then under regulation and enforcement we added a new recommendation, evaluation, that was based on one of the comments yesterday about the need to assess the total impact of the privacy rule.
MS. GREENBERG: Did you want this to be broader?
MR. ROTHSTEIN: Well, and in fact, you see in the bullet, we included the entire Administrative Simplification provisions so that was to address something broader.
DR. COHN: I guess the question is since above it it talks about the privacy rule, so now things need to get --
MR. ROTHSTEIN: So we need to make that consistent so evaluate the effect of the Administrative Simplification provision.
MS. GREENBERG: I actually think this would be stronger if you just made this about the privacy rule.
MS. KAMINSKY: Of the privacy rule. I think that's what the comment yesterday by Russ was about.
MR. ROTHSTEIN: But it sort of morphed into transactions this morning.
MS. KAMINSKY: So we'll change that to the privacy rule and nothing really changed for the rest of the substantive recommendations there.
Under guidance, we deleted the redundant recommendation about creating a brochure or booklet, that was Clem's comment yesterday that it was kind of getting to be overkill with how many simplified versions of the privacy rule, so that's deleted.
The only other thing that's worthy of mentioning, and we never really did go through line by line the guidance recommendations, but under J, training, which is what Mark was about to describe, that we made a recommendation about minimum standards, OCR should set minimum standards for training in different languages and at appropriate levels of comprehension.
MS. GREENBERG: I thought we were going to change that one to say should provide guidance on minimum standards rather than saying set minimum standards.
MS. KAMINSKY: Yes, I think we were going to change that.
MS. GREENBERG: Provide guidance on minimum standards.
MS. KAMINSKY: Ok, then in terms of resources needed to implement the privacy rule, Roman Number V --
DR. COHN: Why don't you read those?
MS. KAMINSKY: Ok. Number 19. Adjustments to Medicaid reimbursement. The Secretary should pursue with Congress and the state Medicaid agencies making adjustments to Medicaid reimbursement rates to recognize the costs of complying with HIPAA.
Number 20. Slightly modified. The Secretary should recommend to Congress the $42.5 million for technical assistance authorized under ASCA, and further, that some of that funding should be allocated to privacy rule implementation.
Number 21. HIPAA compliance grants. The secretary should recommend that Congress fund HIPAA compliance grants for the states.
Number 22. Relieve financial burden for providers. The Secretary should recommend that Congress provide tax credits or other mechanisms for HIPAA compliance for providers lacking the resources to comply.
And that is it.
DR. COHN: Comments or questions about those last four recommendations? Michael?
DR. FITZMAURICE: I'm not sure which ones apply to all of HIPAA and which ones apply to the privacy rule. I see one that says privacy rule implementation but if this is a privacy rule letter, than it looks like it's really expanded the bounds in the bottom here. I'm not saying that these aren't good recommendations, just that the focus seems now broadened and gone beyond the privacy rule.
DR. COHN: So you're suggesting that 19, 20 already addresses the issue, you're saying that 19, 21, and 22 should have some reference to the HIPAA privacy rule as opposed to just HIPAA?
DR. FITZMAURICE: Or maybe part of a letter saying now we have some thoughts about the overall, not just about the privacy rule.
DR. COHN: What I'm talking about is here right now. What are people's thoughts?
DR. HARDING: I think if you look at one, number one, we're talking about Department wide efforts, certainly that would kind of go along with those recommendations in section five.
DR. COHN: So you're suggesting we just leave it alone, I think is what you're saying.
DR. FITZMAURICE: Or to move them together.
MS. GREENBERG: Well, wait. We want it to mean all HIPAA compliance or just compliance with the privacy rule.
DR. HARDING: We're talking about coordination in Department wide efforts.
MR. ROTHSTEIN: Well, let's put it this way. I think it's, let's just take one as an example. The tax credit proposal. It's true that a tax credit proposal could be crafted in such a way that it would apply to all sorts of HIPAA compliance but we believe that we would think that's a valuable way of getting the tax incentives for compliance with the privacy rule. And I think it would be odd to recommend tax incentives for privacy rule implementation without saying it more broadly as for HIPAA. So I concede the question of the scope of the recommendation but in trying to comply or facilitate compliance with the privacy rule, I think at some point, and notably these, we have to suggest things that are broader.
DR. FITZMAURICE: I guess what my response would be, yes since this is going out from the whole Committee, the whole Committee can say this about privacy and this about HIPAA in general. I would just want to lump the HIPAA in general together and the lump the privacy together.
MS. KAMINSKY: Michael, would it help if we made a different heading for Roman Number V? Would that make you feel?
DR. FITZMAURICE: Probably would except as I heard Mark say, he said he thought these were really good for privacy rule but felt embarrassed making the recommendations for the privacy rule and not for the rest of HIPAA which also needs resources. That distinction isn't made.
MR. ROTHSTEIN: So is your suggestion that we make the title for Roman V resources needed to implement the Administrative Simplification provisions? Or Administrative Simplification including the privacy rule? Something like that?
DR. FITZMAURICE: You've got them both together there. My first suggestion was put all the general HIPAA recommendations together and all the privacy rule recommendations together. But if you want to broaden that and say here we've got both of them, you pick out which ones are applicable to the privacy rule, I guess whoever receives the letter could do that.
DR. COHN: So Mark what change are you making at this point?
MR. ROTHSTEIN: I would suggest that it be changed to resources needed to implement the Administrative Simplification title, including the privacy rule, noting that it's broader but also noting that the scope of this attachment in the letter is privacy.
DR. COHN: Maybe this is actually additional resources needed to.
MR. ROTHSTEIN: Additional resources needed?
DR. COHN: I fundamentally agree with you.
MR. SCANLON: They all involve Congress.
DR. COHN: They all involve Congress.
MR. ROTHSTEIN: Correct, that's why it's separate, used to be called Congressional something or other.
DR. LENGERICH: Sort of related to that, on number 20, then where it says allocated to privacy rule implementation, often times people don't associate evaluation with implementation but one of our recommendations is specific to evaluation. I think the intent there is to, that allocated to these recommendations, this set of recommendations is that correct? Then if that's the case I would --
DR. COHN: I'm just listening, where are you going?
DR. LENGERICH: I thought number 20 was advocating for resources for implementing these recommendations that are contained in this list. And so I would just make that note that this funding should be allocated to implement the recommendations in this set here, this set of recommendations.
DR. FITZMAURICE: Because otherwise it omits the evaluation component.
DR. LENGERICH: As one specific point, yes. It may exclude others as well.
DR. COHN: Well how about we say the privacy rule implementation and the recommendations contained herein or something like that?
MS. KAMINSKY: Say it again, I'm sorry.
DR. COHN: And maybe the recommendations contained herein.
DR. NEWACHECK: I had one suggestion on 22, just a word change. Tax credits implies a specific mechanism that some people object to as opposed to deductions. And so I'm wondering if we can just say tax incentives, make it a little more neutral.
MR. ROTHSTEIN: No problem with that.
DR. COHN: I guess the final issue here, I'm feeling sort of badly because I was obviously pushing Ted about his good idea about in the guidance. Is there some way for us, obviously there's going to be further cleansing of this as we move forward, and maybe there's some way to reflect Ted's idea in this guidance under covered provider questions. So hopefully that will, I apologize for pushing so hard on that but obviously I think probably there's some way to get that accommodated in a couple of words there.
MR. ROTHSTEIN: Are you talking about in number two?
DR. COHN: No, I'm talking about 18 A, under covered provider questions.
MS. KAMINSKY: Just to be clear then, the Committee would like to make a recommendation that the Department take the stance that it recommends that entities become electronic if at all possible.
DR. COHN: No, I think there's the answer to the question, what might be the value added, what is the value added of a physician embracing the HIPAA regulations or something sort of like that.
DR. SHORTLIFFE: If you were otherwise planning on going electronic, or if you are electronic, why we would not want HIPAA to be a reason for rethinking that decision. It's sort of basically don't let get HIPAA get in the way of a move towards electronic records if they otherwise either have already embarked on or be considering.
MS. KAMINSKY: Ok, thank you, that's helpful.
DR. COHN: And we can wordsmith a couple of words on that. Now Mark how would you like to proceed at this point? Do you want to move this with modification and subject to further wordsmithing and clean-up by staff?
MR. ROTHSTEIN: Well, I think I would like to propose that it go forward with the modifications made by the full Committee. I think though the changes that we're going to make now are relatively minor and also fairly clear, what we're going to do.
DR. COHN: So you're moving that with the modifications but also subject to corrections or whatever by staff.
MR. ROTHSTEIN: Correct.
DR. COHN: I don't think it needs to go to the Executive committee after this, I just want to make, allow whatever clean-up needs to occur with all this, this wordsmithing we've talked about. Is there a second? Ok, well shall we vote? All in favor?
COMMITTEE: Aye.
DR. COHN: Any opposed? Ok, thank you very much. Mark, I want to thank you and Stephanie, this has been an amazing amount of work in a short period of time.
Now, the next action item is a letter coming from the Subcommittee on Populations. Vickie do you want to present it?
Agenda Item: Subcommittee on Populations Letter to the Secretary - Dr. Mays
DR. MAYS: It came to our attention yesterday during our Subcommittee meeting that the, in terms of the budget, we know that there is still a Continuing Resolution in terms of the budget, but that a very specific aspect of the budget is a potential decrease or cut to the National Center for Health Statistics and it's impact, for example, on the National Health Interview Survey.
DR. COHN: We're losing our quorum walking out the door. Mark? We need to have you back, you're part of the quorum right now. You need to be here for this vote.
DR. MAYS: Ok, I'm going to keep talking while we get him back. And so in our discussion, we were concerned about that and wanted to bring before the full Committee a letter that we would like to send to Secretary Thompson, so what I'll do is I'll proceed to read the letter, everyone here has it, and I'll read it for the benefit of those on the internet.
Dear Secretary Thompson: The National Committee on Vital and Health Statistics has become concerned about what we consider to be a threat to the backbone of our nation's health statistics systems. The health community relies on the CDC's National Center for Health Statistics to provide essential data on the nation's health and health care. NCHS data systems provide a foundation for our nation's health intelligence - identifying new health concerns, tracking progress in improving population health, and providing opportunities for research that helps better understand health risks and outcomes. The constancy of NCHS efforts to monitor the nation's health over 40 years has enabled us to understand changes in our health and health care over time, and has provided us the basis for addressing current and emerging health issues. Now we understand that resources issues are forcing HCHS to cut back on its surveys as well as its program to re-engineer the nation's vital statistics system. We urge the Department to take steps necessary to ensure that NCHS remains able to meet our nation's need for health information. It is particularly important in the event of emergencies or threats to our national security to have reliable and accurate information readily available.
A particular example of the need for attention to NCHS resource issues is the fact that NCHS is planning to reduce the sample size of the National Health Interview Survey (NHIS) because of budget constraints. This survey is a cornerstone of our nation's health statistics system. The survey produces important national information on health behaviors, insurance, access to care, and racial and ethnic disparities; it also serves as the national benchmark for more targeted surveys in states and the private sector, and for integrated survey efforts across DHHS. Because of the costs NCHS will incur in an overdue update of the sampling frame and the information technology of this survey, NCHS projects that the sample size of the NHIS may need to be reduced to half of its current size during the years ahead.
Similarly, states are engaging in efforts to update the national vital statistics system, on which we rely for data on life expectancy, causes of death, teen pregnancy, out of wedlock birth, and other key health indicators. NCHS, the Federal partner in this intergovernmental effort, is working with states to convert the system to a web-based technology platform that will give us data quicker and in higher quality. Yet NCHS has virtually no resources for investments in technology development or assisting states with implementation; as a result it will be years before we see results from this important effort. Both the vital statistics and HHIS data are key sources of information for the Department's National Healthcare Quality report.
The additional resources that would be needed to keep NCHS on the cutting edge of health information technology are small in comparison to our public and private investment in health, but will help address many of our most pressing information needs. The NCVHS urges your consideration of this critical need.
Now there's been on addition that I was given that we could do and that was, it was remarked that we may not be asking specifically enough for something. And if that is the case, the consideration is to take the last sentence and say the NCVHS urges your consideration of this critical need and recommends that sufficient funds are provided to enable NCHS to sustain the NHIS at it's current strength and begin implementation of vital statistics engineering efforts.
DR. COHN: It all sounds good. Comments from the full Committee?
MR. SCANLON: One question procedurally. Was this the report from Ed Sondik? How do we know, I mean how does the Committee know this to be the case? Did Ed report this or do we just know?
DR. MAYS: Maybe our member can raise it.
DR. NEWACHECK: It came out of conversations with Ed and others at NCHS and over time as well, I think Ed has brought up some of these issues when he's spoke to us as a full Committee as well, some of the problems that they're having with NHIS and with the attempts to re-engineer vital and health statistics.
DR. SHORTLIFFE: Is the budgetary decision on this issue really one that rests in the Secretary's office? Or is this a Congressional appropriation question?
MR. SCANLON: It's ultimately in appropriations.
DR. SHORTLIFFE: So in a sense we're asking him to work with Congress to make sure that appropriated monies are appropriated for this?
MR. SCANLON: You could say both, I mean it has to sort of start with, it starts with the Department I suppose, and then the President and Congress can of course do whatever it wants. So, it's not incorrect, you could say that the Committee recommends that the Secretary, you're probably ok with that. But Congress, if you could work the Congress into it some how, it's kind of a one-sided. They can do whatever they want.
DR. COHN: Judy?
MS. BEREK: It's just that I'm one of the bureaucrats present, it's a strange time of year to do this even though, because we're on a CR budget things are quite visible. The fact is the Executive branch sent it's budget that's in front of Congress in eight months ago. And so either you're asking him to do this in the future or to make sure that Congress appropriates as much as is possible, but I think it would come off I think coming now maybe a little naïve in terms of the budget process, unless you're specifically talking to future budget. I'm not saying don't push for more money but just sort of think about how you want to posture it in terms of what is the appropriate thing to be asking for at the appropriate moment. And if appropriate moment now is to say ask Congress to appropriate, and as you work on your future budgets, consider more money. In terms of timing I think that would be the most sensible thing to do.
DR. MAYS: I think those words are a really good friendly amendment. I like them.
DR. COHN: Thank you Judy. Are there questions, comments? Russell?
MR. LOCALIO: I just have to comment that I don't think it's strong enough. If you reduced your sample in half, you're not going to be able to, two sentences later, important national information on health behaviors, insurance access to care and racial and ethnic disparities. You can't do it. I mean the variances on these surveys are big enough as it is. It's hard enough to work with the data as it is because they're heavily stratified and clustered. I don't know, maybe people don't understand variance, the variance estimation, but why do the survey at all if you can't come up with sufficiently precise estimates? Is there a way to tie those two together with a little bit more emphasis to the consequences of that size of a reduction?
DR. MAYS: I think we could probably put in a sentence that talks about --
DR. NEWACHECK: Imprecision of the results.
DR. MAYS: Consequence of --
MR. LOCALIO: Tie it together a little bit more. This is serious.
DR. MAYS: I like these new members.
DR. NEWACHECK: There's a slot for you on the Populations Subcommittee.
DR. MAYS: I'm going to see you afterwards about Populations.
DR. HARDING: I agree that a few examples of what this means and doesn't mean would be helpful, but, the other part as an administrator of a much smaller program, you get letters like this constantly. You have to say ok, if there's new money, where does it go? Or who get's it taken away from that? That I'm sure is, I mean this will be helpful I think, but the other side of it, where does the money come out to go in here will be the real determiner. And that's a tougher question and we aren't offering any suggestions about that I guess.
DR. COHN: Do you have a friendly amendment or a suggestion?
DR. HARDING: Well, I don't have a suggestion, I don't know the overall package, I think that's what as an administrator I appreciate is when someone says we need more money here and we're willing to take it out of here. But that's seldom done.
MR. SCANLON: I think the Committee's role is to identify the problem, I don't think you have to tell us exactly what to do. You're right, it's a zero sum game with the budget and what goes in here comes out somewhere else. So you better be careful what you ask for.
DR. COHN: Vickie, how would you like to proceed on this one? I think we have a couple of options. One is to sort of basically pass it subject to, it sounds like there's going to be a fair amount of additional wordsmithing here, and final review and acceptance by the Executive Committee, that seems to me the reasonable way to go forward. Do you have a thought or do you feel?
DR. MAYS: I actually think the friendly amendments have brought us very close to where we want to go, I don't think there would actually be a lot of wordsmithing as much as it is probably just some editing to incorporate the things that are there. I don't think we have any new concepts we want to put in. If it's small enough, what I would suggest is if this body is willing to approve it, then we can put it forth with the wordsmithing we've talked about and have it looked at by the Chair and the Executive Secretary. If in wordsmithing we do put in new concepts, then I would say let us bring it to the Executive Committee. That would be my suggestion.
DR. COHN: Ok, so recognizing that we actually, we need to, that's what I was going to ask, what is your sense of the urgency?
DR. NEWACHECK: I think it would be ok to go, to do that route, that is to go to --
DR. MAYS: To the Executive Committee?
DR. COHN: It's just hard to sort of say we'll do one or the other and pass it.
DR. MAYS: No, I think that the it can go through the route of the Executive Committee, we'll just set up a conference call, we can even do an email route, I agree.
DR. COHN: Are there other thoughts, additions? I think we have a motion, I presume you're moving this?
DR. MAYS: Yes, I'm moving this.
DR. COHN: Is there a second? Gene. Any further discussion or comments? Ok, all in favor say aye.
COMMITTEE: Aye.
DR. COHN: Opposed? Ok, so that passes. Ok, so that's actually the things that we're voting on. Now the next items, and I think we're sort of rolling down here, is obviously Vickie you wanted to talk a little about areas that you've seen that have sort of overlap that other Subcommittees need to be aware of, brief reports from the Quality Workgroup, from Standards and Security Subcommittee, and I think if there's anything else from any of the Committees that we need to hear about and then we'll adjourn.
Agenda Item: Subcommittee on Populations Update - Dr. Mays
DR. MAYS: Ok, what I'm going to do, it's like what I tell my students, I'm going to make this one quick and then let you ask questions as opposed to trying to eat up a lot of time, because here's what I would like is to identify the process as opposed to at this late date a lot of dialogue.
So what I've identified are some cross cutting issues, some of which seem to belong in other Committees. We're looking for those Committees probably to take up this work, maybe in conjunction with us or separately, however the pleasure strikes you, so whatever the process is that we might come up with is what we're looking for. Then I think kind of after this we can try and continue the issue as well as determine whether some of these issues need a full Committee discussion or to just reside in the smaller Committees.
Ok, I'm going to start with talking about what I think probably falls under Standards and Security to some extent. Kind of in an earlier life the Committee there have been concerned, raised in particular by one of our retiring members, Barbara Starfield, that race and ethnicity needed to be collected and considered in the work on Administrative Simplification. Marjorie has also been a very consistent voice throughout about the collection of race and ethnicity and the transaction process of HIPAA.
In a 1999 presentation by Tony Diagello(?) on the HHS plan to improve the collection of race and ethnicity data he reported that one of the recommendations is ensuring that HIPAA standards include race and ethnicity identifiers as one of the ten HHS recommendations that he came up with. The same issue we saw when we looked at the Medicaid Managed Care hearings regarding how race and ethnicity are captured. In the course of hearings we heard about race and ethnicity being captured by a variety of means but it appears most of the time that it relied on observation. What the OMB 15 directive, which indicates a method for the collection of data on race and ethnicity by all groups that either collect data that is to be reported to the federal government or in the instance of the federal government, the question still remains on how and when, particularly in terms of administrative data, that this information is collected. One of the first questions is whether the data is being collected adequately. Second, if the data is collected, who is collecting it? How and for what purpose is it being used?
Our Committee has heard testimony on the need for variables beyond simply race and ethnicity examining the health of populations, particularly racial and ethnic groups as well as many other vulnerable populations. Testimony has been given to us on the importance of considering the context of health care and health status, which I think Barbara did very well. We've had presentations throughout the life of the Committee and it's various iterations that have included in the importance of SES, uses of measures of poverty, geo-coding and language. The questions of who collects data for example may be runnable to the issues of fluidity in reporting race and ethnicity.
The Subcommittee is well aware of the emerging data that indicates who are the perceived context of asking about race and ethnicity may be a factor in how race and ethnicity are reported. Equally as important is the question of why it is asked, but it also influences how it is answered because of the fear of discrimination.
We raise these issues to ensure that the cross cutting issues are weighed in on the discussion, for example in Standards and Security, as well as in the other Subcommittees.
The issue of code sets to capture race and ethnicity in administrative data has come up both in the Subcommittee as well as the full Committee. In our hearings with American Indians and Alaska Natives, the issue of the need for codes to capture, for example, traditional medicine approaches, which are often integrated with Western medicine procedures. The lack of codes doesn't allow for evaluation or integration of some things viewed as essential to the health of that specific population.
On quality of care, again in our hearings, particularly with American Indians and Native Alaska, the comment that much of their health care is organized through IHS, for the tribal group, and they're really struggling with the limited availability of quality of care. One of the recent IOM diskettes studies discussed the limited quality of care data. This group in particular has asked that we pay attention to this issue. We received recommendations for the Committee to take a leadership role in recommending the development of quality of care measurements, particularly for American Indian and Native Alaskan populations.
In terms of the health information structure, again one of our compelling hearings was with our American Indian and Native Alaskans. As a function again of their relationship with the Indian Health Service, which is where they derive much of their health care information, and also which is where their information technology systems are located, budget cuts approach as much as 60 percent because of the self determination act that occurred.
Between 1994 and 2000, there has been this percentage of cut. A significant impact has been on the development of an information infrastructure. We heard requests for creation of some type of inter-connections among the 300 Indian health network care sites to more effectively collaborate, pool information, expertise, and resources, in order to be able to deliver better services. A request for compatible information systems, and they used the example of the Department to Veterans Affairs. Many tribes create and manage their own health data systems. Indications of the loss of valuable data on health status, health care and quality care, are lost through the use of shelf systems as tribes take over their own health management care systems.
Also as a function of the severe budget cuts, data quality, for example, is of concern. Data quality ranks 14 out of 16 in IHS priorities rankings and has never risen above 11. Hospital and clinics are still dealing with dialing up with 56k modems, security and firewall development is needed. The current focus by IHS in information infrastructure development is on the improvement of patient care and third party collections. Data quality is far down on the list.
The Association of Native American Physicians indicates a frustration of difficulties getting data for use or getting data into the IHS system. At an IHS facility you will find two or three different software applications running in order to capture necessary information such as billing or code set. RPMS software for client in-take, registration, or schedule, but pharmaceuticals then run on something else. So the big issue is one of the development of interfaces. They have indicated a desire for a system to access cost of care.
And if we move to privacy, throughout the hearings as well as in the minutes of previous hearings, we have heard from in our presentations, unique concerns of racial and ethnic minorities of their fear of discrimination in health care. Recent research has indeed supported that such difference in health care treatment, quality of health and result in health status, serve to support these fears. When these conditions are more likely to occur in federal systems have resulted in fears of greater likelihood of identification of specific individuals or stigmatization of specific communities, specifically, through linkages among records without explicit consent.
At the same time, small communities greatly in need of data such as the American Indians and Alaska Natives request balance in the confidentiality rules such that more small area or small group analysis can be conducted. Specifically in this regard a request for increasing data centers that can protect identification while increasing data use on these groups.
If geo-coding or small area analyses were used, issues of privacy become significant concerns. It is one of the areas that the Committee, in terms of the hearing, plans to make recommendations that we use geo-coding or small area analyses.
Ok, so those are some of the issues that have come forth that we'd like to put in other people's, on other people's plate as they're shaking their heads. Some of this would require a bit more discussion from some of the other Committees as well as the Committee members. But in the interest of time what I'd like to do is put it out and request a process.
DR. COHN: I have a suggestion --
DR. MAYS: A solution, too?
DR. COHN: No, I don't have a solution, actually I should sort of comment first of all that the Subcommittee on Standards and Security is actually going to be in January having a session on complementary and alternative medicine in the needs for billing etc., etc. Now that just happens to be one of your areas and it is completely unrelated. We'd be happy to have you come and join us.
Beyond that, I guess I would ask the full Committee if you have any thoughts. As I'm listening to this activity, this list, it appears to me to be something that ought to be handled by the Executive Committee, that somehow there's a, I wouldn't say that there's a little bit of a fight, but there's always an issue of project plans, priorities and Workgroups, Subcommittees, and others, that somehow needs to be wrestled with probably by the Chairs. I'm not convinced that things work very well by sort of throwing issues over the fence to another Committee, but I think on the other hand, there's a terrific value to informing each other about the issues that we think are sort of cross cutting issues. I'm just speaking as a Subcommittee chair. We're actually tired of getting into ICD very deeply. Our response was let's bring it up to the full Committee and have them take a look at this, recognizing that there were lots of that's not going to happen with each of these issues.
As I said I'm only the Acting Chair, so this just happens to be my good idea.
DR. MAYS: Let me just comment. One of the things that I did see in going back through things is that there has been in the past times at which Committee's have held hearings together, at times have met together, so I do think if where you want to put this for discussion first is with the Executive Subcommittee, a discussion of how to work the process might be actually the best first step. Part of why we're bringing this to you is because we don't not think that all of this belongs just in our Committee nor do we have the expertise. We do think it's probably our role to kind of be the watch dogs to say don't let this fall between the crack, but when it comes to code sets, especially with Kathy, you're not going to have the expertise. We're going to be saying very naïve things, eating up time and things like that, so we think it should go with people who are experts.
DR. COHN: Mark, do you have a comment?
MR. ROTHSTEIN: Well, I think the issue of privacy concerns and special populations is a very interesting and important issue that we could in theory do a joint hearing or a project together. The problem is that we have a finite amount of time and resources and doing that would mean that we would have to bump something else. And so it's a question then for priority setting for the Executive Committee as well as the members of the Subcommittee.
DR. COHN: Other thoughts or comments? Jim?
MR. SCANLON: Actually there was quite a variety of issues Vickie, and on some of those there are some activities underway and others we really need to stimulate something. I think that if we can, if that could be written up or even as a discussion draft, then we could get it to the Executive Committee. But it may be that some of these items are really, could even be dealt with more directly. I think, for example, the idea of ensuring that the transaction, the HIPAA transaction standards include the standard race and ethnicity as the kind of an item that would be filled is, there's a process underway through the STO's to do that and there I think probably the best thing would be to pursue that. Other things would be referred to different groups.
DR. COHN: Ok. Well is everyone comfortable with the process basically being to the Executive Committee now that we have some specifics? Try to wrestle this one out. As I say, I think the concept of having joint hearings on certain issues, or even on some things having, even though we're having a full NCVHS meeting having a full hearing involving all of the members, may be things that we want to look at. There are certain things that are of such general interest that even though we particularly have this meeting format, there may be some issues that we really want to just hold a hearing on, a half day or otherwise to further investigate. So is everyone willing to have us work on it and bring back more proposals on how we should do this? I see some heads nodding yes.
DR. MAYS: Can I just ask, on the Committee, on the Subcommittee, if they have any suggestions, please give them now before you retire. Don't make us use the last line of the sentence to find you and come back again.
DR. NEWACHECK: I would suggest that there might be more focus on population issues in the full Committee meetings because I think there's been a bias in the five years I've been on this Committee towards more standards and privacy issues being discussed at the full Committee, at least as we have people come and talk to us. It would be nice to have more balance there I think.
DR. COHN: It's sort of interesting that you have that view.
DR. MAYS: We had actually asked I think at an earlier time that what happens is that when other Committee's present that you tell us what the population health issues are and the impact on particular populations. So we really want to push that, because I think it really will kind of bring us to a different point in this Committee.
DR. SHORTLIFFE: I'd like to second that because it does seem to me that the discussion we've had today has raised several issues that are quite relevant to the other Subcommittees that we might not have otherwise thought of. I have a sense of some of the data system issues that are pertinent for population health that have been clarified by some of the points that Barbara and others made today, so I think it would be helpful.
DR. COHN: And certainly at the Executive Committee at their session in the summer at the retreat basically felt that the population health was really going to sort of be the theme of the next year and so we're trying to make sure that there were population health things brought forward. Now it depends on what level. There's the level such as Barbara Starfield giving a presentation on population health, and as I said I want to hear some more on genomics, how all this fits in. Then there's this issue of getting down to these specific issues and we sort of need to wrestle with the right issues and how they get forward, so I agree with what you're saying, but we still need to put all this stuff together.
DR. NEWACHECK: Simon, one other suggestion with the two remaining vacancies that need to be filled. It would be really helpful if those could be people who are focused more on population issues given that the Subcommittee is down to two people right now. We don't know what the new members are going to do but --
DR. COHN: Paul, I think you were asking for a reappointment.
Anyway, is that ok in terms of completion of that conversation? You'll hear more, we'll be talking about it, I think we'll be seeing it written up, and Vickie thank you for sort of putting together. It's been very helpful, it's great to move from beyond and just talking at a high level about this to really getting into things.
Now, in the next seven minutes we will do Subcommittee reports. Subcommittee on Standards and Security, which I'll give a report on very briefly. We heard a lot from you, many different views about the scope of the cost benefit, we are going to be moving forward with it. I think we basically heard at least as of this moment the reaffirmation of the scope and we're in the process of developing a scope statement.
In December, our Subcommittee meeting, we'll be talking about it more and hopefully by the time we get back together we'll be able to talk about it a little more intelligently about what's going forward. I'm not terribly optimistic with we've had the last scope discussion, but then again I've been around here for a number of years. So anyway that's going on. PMRI is moving forward and those discussions continue around clinical terminologies.
Upcoming sessions include December 10th and 11th of the Subcommittee which will be talking DSMO reports, ASCA issues, potentially some streamlining of HIPAA processes, see if people have some ideas on it, as well as talking more about PMRI. We have hearings on January 29th and 30th, where there will be at least one session on alternative and complementary medicine, and I don't know how long that's going to be, if it's a day or a session or what. And then we'll likely be talking about other issues in relationship to that. Have sessions on March 25th and 26th, and then May 21st and 22nd. So we're going to be here a lot the next couple months.
I don't think I have, there's no real action items from the Subcommittee. Mark, is there anything from Privacy beyond the letter?
MR. ROTHSTEIN: Well, we are anxiously awaiting the full implementation April 14th, and once that's done then the Privacy Committee can move on to other matters. We have identified the issue of the migration of health information beyond the health care system as an issue that we want to pursue and of those the first issue that we want to take a look at is school based health records. So that will be our next topic of concern. So there is a life after HIPAA for the Subcommittee.
DR. COHN: And sort of just to add, we expect at some point, maybe for the next meeting, we'll actually have a security regulation, and at that point the question will become, an ongoing discussion between Privacy and Standards and Security, how we handle sort of tracking that.
DR. SHORTLIFFE: Is there any doubt we'll have it for the next meeting? I thought it was scheduled for next month, is that not the case?
DR. COHN: I have full faith that these schedules will be met. Ok, next, Vickie do you have anything else from your Subcommittee?
DR. MAYS: Populations at this point is focusing on trying to get reports written and a letter that we want to bring forth by the February meeting on some of the things that we've heard in the hearing. I appreciate the Privacy letter because it gave me a suggestion, you all have to do it again, it gave me a suggestion of how to frame, because we have lots of issues, and we don't want to do just a lot of little letters, but instead this will offer us, we'll try not to do more, we'll try and do less in terms of a set of recommendations.
We still need to have a couple hearings but I think given our resources in terms of numbers of people we're going to focus first on trying to get some of this work completed.
I will be going to the Institute of Medicine's meeting December 12th and 13th on collection of data on race and ethnicity and I think that's it.
DR. COHN: Ok. Workgroup on Quality?
Agenda Item: Reports from Subcommittees and Workgroups - Workgroup on Quality - Ms. Coltin
MS. COLTIN: We've had two activities on our plate. One is the preparation of a report on data gaps and recommendations regarding measuring quality of care. And the other has been a response to a request we received some time ago from the Agency for Health Care Research and Quality to provide input and advice to them on the National Quality Report. With regard to our own Workgroups report, we are planning to bring a draft report to the full Committee in February. And so you can hopefully look forward to that.
And with regard to the advice to AHRQ, we had earlier I believe decided that we would use the Executive Committee as the vehicle for providing that advice and that the Executive Committee then sort of delegated to the Workgroup on Quality the job of taking testimony on the issue and we did hold a hearing in July in Chicago to do that. And AHRQ has also shared with us a summary of what they received in their public comments in response to that solicitation.
We talked about this this morning, and we actually have seven recommendations that we want to make to them with regard to improving both the current report and future iterations of this report since it will be an annual report. In this particular letter, we are planning only to make recommendations about what we think should be done rather than how it should be done, and to reference the report that we are planing to present here in February around some of the how issues. So that will go through our usual process of vetting.
DR. COHN: And this thing will be an action item then in February.
MS. COLTIN: The report will be an action item in February. The recommendations to AHRQ I would like to actually read today but it is the Executive Committee that actually will make the decisions about reviewing this formally and forwarding it on in the form of a letter, so that was my proposal.
MS. GREENBERG: What was the timeline for AHRQ? Can this wait until the February meeting?
MS. COLTIN: No, it can't wait until the February meeting. It's going to have to go to the Executive Committee through presumably an expedited process, email, review, comments.
DR. COHN: I guess rather, I'm a little concerned at this point about you beginning to read a bunch of recommendations we haven't seen. Are there lots of them?
MS. COLTIN: There are seven. Each one is one or two sentences. They're pretty short.
DR. COHN: I guess I'm going to recommend that A, we'll let you read it. I don't really think we want to entertain comment or discussion at this point about it, with the idea that maybe we could send them off via email to all the Committee members and start asking for comment and then when the Subcommittee meets to address it we'll hopefully have all of your comments back. Is everyone ok, comfortable with that process?
MS. COLTIN: Sounds fine.
MS. GREENBERG: The Executive Subcommittee will have to have a conference call on this I think, I don't know if we have meeting plan between now and February.
DR. COHN: Well, since we actually have a full meeting we're going to need to organize between now and February, we'll have to have a meeting, I mean a quick call.
MS. COLTIN: First we wanted to applaud AHRQ for developing an impressive set of measures, health care quality, and to make the following recommendations for improving this in future versions. One, improve the balance within the measure set and that means increasing the number of measures pertinent to children versus adults, those relevant to emotional health versus physical health, those relevant to ambulatory and out-patient care versus in-patient care. Those that are population based and cross cutting versus disease specific. And to also address issues of adverse affects and unintended consequences, which are currently not really represented in the report. That's the first recommendation.
The second is to work to increase the number of measures that will be available at the state level for finer gradations, such as MFA's or market areas. And by key population sub groups. That action on areas of deficiency in a climate of double digit increases in health care costs and severe shortfalls in state budgets will depend in large part on the availability of compelling data at the state and local level.
Number three is a recommendation that AHRQ expand the framework for measures beyond the Institute of Medicine recommendation, and that we actually applaud AHRQ's addition of efficiency measures which already do go beyond that framework, but we believe there should be some further expansion. They have a concept area called end of life and we believe that should be expanded to really include changing needs across life stages, so that it would help us address some of the deficiencies or imbalance in children by looking at things like measures for promoting healthy development or anticipatory guidance for adolescence, and so forth.
The fourth recommendation, which goes along with the third in terms of expanding the framework but is very specific, talks about considering adding evidence based systems measures, such as adoption rates for electronic medical records systems or interim type systems like patient registries, and adoptions of proven processes like use of reminder systems for patients or physicians.
So those all have to do with content. The fifth has to do with presentation of the measures and recommends that the measures be presented in a way that reflects variation as well as average performance.
The sixth is that the report is on health care, not health, therefore when outcome measures are used there should be text accompanying it that emphasizes that outcomes can be heavily influenced by factors beyond health care. As Barbara's presentation clearly showed us.
And then finally that they should consider producing different versions of the report for different audiences, policy makers, payers and providers, and consumers, and/or companion guides for these audiences. And that they might consider using their own talkingquality.gov web-site as a vehicle for doing this in a low cost way.
Those are our recommendations.
DR. COHN: Ok. Thank you very much. Obviously the process as I said we'll be able to get them to electronic format, send them out to the full Committee, ask for some comments back and then afterwards the Executive Committee will review them and forward them on. Thank you very much for your good work.
Now final report is from NHII Workgroup.
Agenda Item: Reports from Subcommittees and Workgroups - NHII Workgroup - Dr. Shortliffe
DR. SHORTLIFFE: Jeff asked me to do it. I'll keep it brief because most of our meeting yesterday was basically planning our upcoming hearings. They'll be two sets of hearings, one is already scheduled for January 28th and 29th here, and then there would be another one that's more on the public health side that may be in Atlanta later. The ones on the 28th and 29th are focused either in the consumer area or on the so-called National Information Infrastructure, because of an effort for us to try to better understand the actual technology of the internet, its current status, the direction its headed, and the role that the health care community might play as partners in that activity. So we have a proposed list of people to testify and now we have to see if we can get them, we're aiming high but I think there's a chance since they're local that they, if they're in town, be willing to do this for us.
And then the second set perhaps a month or so after that down in Atlanta and we'll be reporting at least on the first set by the time we see you back here for the full Committee.
DR. COHN: Ok, I think I probably need to have a conversation with your Chair. I think there's actually an overlap of one day with the Subcommittee on Standards and Security, and that may be intended --
DR. SHORTLIFFE: Actually they're right in sequence aren't they?
DR. COHN: Well --
DR. SHORTLIFFE: Oh, I said the wrong days, 27th and 28th, so people that are on both actually can just come and stay for a week and go to the community center.
DR. COHN: No, that's no problem. There's actually a key there by the way for, other comments? Jim has a quick request from I think the Subcommittee chairs.
MR. SCANLON: Yes, Subcommittee Chairs. We're doing our, we're in fiscal year '03 as you know now, we have a Continuing Resolution now but if we envision, we'll have a normal amount of support we believe for the Committee's activities. But if we envision, if any of the Subcommittee's have a bigger study or something else that would require more than ordinary resources, for example the impact study, let us know over the next weeks or so so we can begin factoring them in, in terms of the budget for '03.
DR. SHORTLIFFE: Can I just point out that everybody found at their place a copy of the report that the IOM produced yesterday? We managed to get copies sent over, it's literally hot off the press and it's filled with recommendations to the Secretary of HHS in response to his request for an IOM rapid fire study that proposed specific Administration projects, and several of them overlap in our areas of interest and I thought it might be of substantial interest to the Committee to look and see what's in there.
DR. COHN: Ok, thank you very much for providing this, I think it will be a very valuable document for us to take a look at. I want to apologize to the full Committee, I told you at the beginning of the day that at 3:30 we were going to be done. I am I think six minutes late now, so I do want to apologize. Is there something else? Ok, what is your comment, realized that you're making me a liar here on the internet.
MS. GREENBERG: We have not actually discussed future agendas, the dates of course are on your agenda, and I think several things have come up already in these presentations, we expect a report from Populations, we expect a report from Quality, we also will probably be looking at a draft outline of the 2000, what's the status of the 2000, 2002 report? We, for the new members, we do an annual report or more recently we've been doing kind of a few years together, so we are working on, we're going to be working on a 2000/2002 report for the Committee. There are other possibilities. I think that obviously we're going to have to convene an Executive Subcommittee conference call for a number of reasons and to plan for the next meeting. Are there any, we were trying to get actually another presentation on population health, either from Dr. Stoddard or Dr. Evans, I don't know that we're going to see them, you had mentioned genomics as a possibility. So I would just say that if people have suggestions for topics for the full Committee meeting in February that haven't been mentioned, please let me know.
DR. COHN: Anything else? Well, with that I want to thank everyone I appreciate your forbearance of an Acting Chair. I really want to thank the retiring members for their service, it's been great working with you all. Obviously, welcome the new members. The meeting is adjourned.
[Whereupon, at 3:40 p.m., the meeting was adjourned.]