[This Transcript is Unedited]
National Committee on Vital and Health Statistics
Subcommittee on Populations
March 4, 2004
Hubert Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
CASET Associates, Ltd.
10201 Lee Highway, Suite 160
Fairfax, Virginia 22030
- Vickie M. Mays, Ph.D.
- A. Russell Localio, Esquire
- Eugene J. Lengerich, V.M.D.
- Donald Steinwachs, Ph.D.
- Peggy B. Handrich
- Dale Hitchcock
- Suzanne Heurtin-Roberts, Ph.D.
TABLE OF CONTENTS
Call to Order and Introductions – Vickie Mays, Ph.D.
P R O C E E D I N G S [3:07 p.m.]
Agenda Item: Call to Order and Introductions
DR. MAYS: Okay, folks. I am going to get started on time, if not even a little bit early because the Quality people really want to try and get their report done.
We want to try and stay on time. I am going to change the agenda that you received for several reasons. One is, which I am just absolutely pleased and delighted about is you can see what it looks like around this table, which is we used to all be able to cluster around this — you know, just up here in the beginning, but due to the effort of Jim Scanlon in terms of sending out the e-mail more broadly to the agencies about, you know, the need for this committee to have individuals from other agencies, not just our subcommittee, but for each of the subcommittees, it has resulted in just some excellent new additions that I am just thrilled about.
What I think we should do is spend some time understanding who is here around the table. I should spend some time talking about what the things are that are on our agenda and I know I have talked to some of you who are staff that have been here already about some ways we might think about bringing some things to completion. So, I want to kind of share the process by which, you know, we might be able to do that.
Then to tell you how I think we should approach getting our first report done and wrapped up and I don’t want to see us have to take from now to June just to do one report, but I think we are very close and I was able today to talk with Marjorie and I think that Susan Canaan might be able to help us because she is finishing up the Quality report, so Susan Canaan, I think, may be able to come over and help us with some of the editing and reorganizing so that as we look at the report then we can, you know, kind of deal with just the substance and not have to deal with some of the actual editing.
So, let me start by welcoming everyone. I appreciate your time. All of us around the table do have a day job. So, I really do appreciate that even with you being assigned, that you actually have taken the time to be able to be here. I am talking specifically to a lot of the staff because the members are here. So, we allocated the time to be here.
What I would like to do is to actually start with some introductions and I would actually like your introduction to be more than your name, rank and serial number. The reason is that I want to follow it up by talking about some of the work that is on our plate. It will be helpful for us to know a little bit about, you know, what your interests are, what expertise you bring to the table. So, I am actually wanting you to say a few words about what you do and kind of — you know, what you do may not also be what you are interesting in doing. So, if you have something else you are interested in, to lighten out your agency, and you are doing that, that is fine, too. I mean, some of you come and have expertise from a job before and not what you are doing right now.
So, you know, let us try and match you up with things that you have an interest in doing so that we all can actually be proud of the product that we are going to develop, but at the same time, you know, make a contribution in something that we really have passion about.
So, let’s start at the end of the table because I am sure you thought I was going to start up here. So, let’s start all the way at the end of the table.
MS. KASLER: My name is Evelyn Kasler(?). I am with the Office of Population Affairs at the Department of Health and Human Services.
I have actually been asked to help staff the Privacy and Confidentiality Subcommittee. However, the work that this group is doing is also of interest to me. So, therefore, I have taken it upon myself to come here and listen to the conversation.
DR. MAYS: Oh, we welcome you.
Can you say a little bit about like particular issues that you work on or kind of some of the —
MS. KASLER: Primarily, I do policy and legislative work for our office. We administer the Title X Family Planning Program and then a much smaller demonstration program for teen pregnancy prevention. Lately, I have been involved with revising our administrative data systems for the family planning programs. It has been close to nine years since we revised that data collection instrument and we are currently looking for a one day approval, having added a number of new tables and working with our grantees to implement that right now through regional training sessions.
DR. MAYS: Great. Welcome.
MS. KOPPELMAN: I am Lacey Koppelman. I am from the Office on Women’s Health at HHS. I am actually not a member of the subcommittee. I am representing a new member, who couldn’t be here today and that is Suzanne Haynes(?). Suzanne Haynes is also in the Office on Women’s Health. She is the senior science advisor. Right now, we are both working on what we are calling a Women’s on Minority Health Database. Basically, we have been funding a contractor for the past year to create a one stop shopping database for all of women’s health. So, it is going to include all major diseases, medical health, violence and abuse, prevention, access to care, everything in the database. We are getting it from sources that are already available.
The great thing is you will be able to break it down by state and county level, also by gender. There is going to be data on men in there as well. And also by race and in some cases by age. So, many, many cells in the database
DR. MAYS: You currently have worked with — I guess you all have a contract and you have worked with NCHS to actually put up some data similar to that. Is this building upon that? Is it coming from the same source that that data comes from or are you actually getting the data from different sources?
MS. KOPPELMAN: I think maybe you are talking about the pilot project that began in 1999, which is one of our regions.
DR. MAYS: No, you actually have two projects. You were before us with a — at a hearing. So, I think we kind of know a lot, but you have some data. It is actually up on a web site of CDC, in which it allows you to actually go in for each state and there is a certain number of variables that exist and you can look at that data by gender and then I think in your pilot project what you did was then it was gender and race.
MS. KOPPELMAN: So, yes — expanding on all that to all ten of the regions that are now going to be national. We are doing it region by regions. We have, I think, about half the regions done so far and then hopefully by about May, we will have them all done and it will be combined on one disk for the whole nation. But, yes, it is sort of growing on previous — and the data come from all sorts of places. I think the FBI was one source and, of course, NCI and, of course, National Center for Health Statistics.
DR. MAYS: Tell Suzanne Haynes we said welcome.
MS. EVELYN: My name is Brenda Evelyn and I am from the Office of Special Health Issues and primarily what our office does is it is a patient liaison office. We help patients with serious and life threatening diseases get access to investigational products. With respect to racial and ethnic data, we are sort of in a funny situation because we don’t fund any studies. We don’t provide any services, but we are in an interesting situation of receiving data from pharmaceutical companies, biotech companies, device companies in support of their applications for product approval.
So, I guess maybe about five years ago, we tried to start to look at racial and ethnic make-up of participants and clinical trials. We recently just at the end of 2003 had a guidance document out because most sponsors weren’t reporting that information. We asked them to report using OMB race and ethnicity categories.
The problem that we are seeing with that is that a good number of clinical trials are done outside of this country and those things don’t apply. So, there is a lot of discussion going on now with how do you harmonize all of that and get it so that it is something that can be comparable to other databases and also we are attempting to look at the adverse event reporting mechanism that right now does not really require specific racial categories on that. So, that Federal Register notice just closed February 6th and we are compiling comments now about what people what people feel about that one way or the other and then we are — we don’t know yet what the next steps will be.
DR. MAYS: The commentary was for the general public or are the — is it being weighed in predominantly by the pharmaceuticals?
MS. EVELYN: Actually it was out there for anybody to comment on. We got a total of 18 individual comments, primarily from pharmaceutical companies. We had two device companies. We did have some trade associations and then we had some medical professional associations also responded representing their clients.
DR. MAYS: But the comment period is closed?
MS. EVELYN: It is closed, yes.
MR. HITCHCOCK: What was it? A notice of proposed rulemaking or —
MS. EVELYN: No, it was a request for comments, comments on adding racial and ethnic data fields to the MedWatch Reporting Form — and if so, which ones — what should we use?
DR. MAYS: So, that is not — it wouldn’t move to — well, I heard you say rulemaking. So, that means — that is just comment that gives you kind of a feel for what people are thinking about, but that is not like preliminary to moving to a required —
MS. EVELYN: We don’t know yet. I think what, based on the comments that I have seen so far is that most people don’t seem to object to capturing race and ethnicity, but which ones — how to do it is the issue because a lot of the people are using race and ethnicity categories sort of agreed upon by the International Committee on Harmonization, which I can’t really speak exactly to what those are and how they really differ from the OMB ones, but the OMB ones are U.S. specific. So, people are saying if we are capturing that for the clinical trial data preapproval, it doesn’t make sense to use a different one post approval in adverse events because you can’t compare.
So, we are trying to work all of that out.
DR. MAYS: Great. Welcome. Thank you very much. We are very happy to have the FDA with us.
DR. HEURTIN-ROBERTS: I am Suzanne Heurtin-Roberts. I am from the National Cancer Institute at NIH, National Institutes of Health. I am interested in doing what you said, trying to figure out how to possibly use these categories better.
I am a medical anthropologist and social worker by training. I guess my great interests or my great frustration is the way we use concepts, such as race, ethnicity or misuse concepts, such as race and ethnicity. As a social scientist, my dream is that we will use them in a way that makes theoretical sense so that we can get some good data.
As far as the committee, I am — I think what my greatest concern is that we collect data that makes it possible to address health disparities and research health disparities in all groups in the U.S. so that we will have data to actually address — I didn’t give you my rank and serial number. I am from the Behavioral Research Program at the National Cancer Institute. I am their health disparities coordinator and I am director of our Centers for Population Health and Health Disparities, which is trying to move a model of studying health disparities in terms of population health and linking various levels of analysis, which it social determinants, behavioral and biological. So, that is what we are doing over there.
DR. MAYS: These were new centers that were just got funded?
DR. HEURTIN-ROBERTS: I guess September they were funded. But, yes, we just had our first meeting —
DR. MAYS: So, how many do you have?
DR. HEURTIN-ROBERTS: We have eight altogether. From NCI we have four and a piece of another one. The National Institute of Environmental Health, the National Institute on Aging and social sciences research, my colleague across from me, are cooperating, participating in this project with us.
DR. MAYS: Great. When we are looking for, you know, people to comment, we will know now that those centers are funded and underway. So, they might be able to — because I know about a couple of them actually are doing a lot of secondary data analysis. So, they might be actually places where we might learn more about these issues from. So, that is great.
MR. LOCALIO: I am Russell Localio. I can answer part of your question. Lieutenant U.S. Naval Reserve. That was 25 years ago. I can’t remember my serial number. But in the last — I am in the Department of Biostatistics and Epidemiology at the University of Pennsylvania School of Medicine. So, numbers are my friends.
Other than the fact that I am the chair of the Data Privacy Committee of our center, I work mostly with investigators on a host of topics. I am the statistician for our patient safety program project grant. But I do a lot of work in statistics in other areas. I approach problems usually from the perspective of the statistician.
DR. MAYS: Statisticians are our friends, too.
PARTICIPANT: — I am also a health statistician. I am with the Indian Health Service — program statistics. I wear many hats these days. I am actually splitting my time right now between the Indian Health Service — upstairs. I am working on — healthier U.S. with them, working on partnerships that — my regular hat is back at Indian Health Service working n health disparities on the health care status report that came out in — and the next one that they are starting. I have been working with the American Indian component of those reports. I also serve on the IRB for the Indian Health Service and do a bunch of number crunching for the mortality and some morbidity data out of that patient care data as well.
DR. MAYS: Just so I understand, when you say you are serving on an IRB, which IRB?
PARTICIPANT: The Indian Health Service National IRB.
DR. MAYS: Oh, the national. Okay.
DR. LENGERICH: I am Gene Lengerich. I am at Penn State University at the College of Medicine, which is at Hershey. If you haven’t heard of that, you haven’t —
PARTICIPANT: Where the chocolate is.
DR. LENGERICH: In my day job, I work with the — I am in the Department of Health Evaluation Sciences, which like Russ, is fairly quantitative. I am an epidemiologist by some of my training, at least, the more recent training. Before getting there, I spent a fair amount of time with CDC, as well as with North Carolina. So, I understand the state perspective fairly well.
There I do research in disparities, cancer disparities, particularly for rural populations. I am also pretty involved with several GIS mapping projects, as well. So, I have an interest in that area.
DR. MAYS: Thank you. Welcome.
MR. HITCHCOCK: Dale Hitchcock. I work in the Office of the Secretary for Planning and Evaluation now. Before that I was in the Office of the Secretary for Health. Way back when, I sort of cut my teeth, I guess, as a statistician for a long period of time at the National Center for Health Statistics, where I was involved in the National Health and Nutrition and Examination Survey and the HANES survey for — I did everything from analysis, wrote a few reports, programming, eventually got into such things as IRBs, informed consent, in that area and marketing the surveys and went to the old ADAMHA, the Alcohol, Drug Abuse and Mental Health Administration for a few years.
I was there when it turned into SAMHSA. I was sort of their data policy guy, an OMB clearance officer at that time. Now, in ASPE, oh, boy, I am doing a lot of just sort of staff work and reviewing stuff. We review every OMB clearance package and major national surveys that go through the department. A lot of them we review regulations and we review Health U.S. every year.
I do an awful lot of contract work, both of my own contracts — got one in geocoding that Gene is going to help with a little bit. I serve on our ASPE peer review panel and that reviews every contract basically that goes out of ASPE, grants, that sort of thing. I am also advising all sorts of people these days on how to write their task orders and contracts.
That is enough.
DR. MAYS: It seems like we should do one — on the IRB, they talk about birds of a subject. It is like birds in the system.
I am Vickie Mays. I am at the University of California in Los Angeles. My original training was as a clinical psychologist. So, it is almost like that question Barbara asked today about, yes, I started out at that really individual level in terms of, you know, from a clinical perspective. Felt like from a research perspective, that wasn’t enough. So, I went back and actually did some training at the University of Michigan, at the Institute of Social Research so that I learned a lot about survey research and particularly data analytic techniques for racial and ethnic minorities.
Still felt like that wasn’t enough. So, I went back to school and got myself an M.S.P.H. in health services while being a fellow in health policy at RAND. My research has for some time looked at some of the contextual issues, particularly in terms of the development of behavioral interventions.
I was doing for awhile, for quite some time, I was actually doing a lot of that work in the area of HIV/AIDS when it kind of was a crisis situation, so we thought. I decided it was time to kind of equal out my portfolio and get back to a lot of the other research that I was doing.
As of recent times, I am now also the director of one of the new NIH centers on health disparities. So that in and of itself kind of keeps me in the middle of quite a bit of very interesting research that a whole host of — we are really focusing on the junior faculty, but the junior faculty has been doing so. As of late, I have actually been looking at a very early area of mine, which was informal health seeking for mental health.
So, we are looking at that now in terms of the use of traditional medicine and how people use traditional medicine to actually try and solve problems that normally you might come to a psychologist for, but, you know, so, that is actually a big component in the center, along with health communication and health literacy and provider behavior.
So, I think that those are going to occupy a little bit of my time.
DR. STEINWACHS: I am Don Steinwachs. I chair the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health. Let’s make sure we get all the names in these days. It has been a real pleasure for me to be there. I have never had a job anyplace else. No one would offer me a job. So, I had to stay on. Like many things, you rise for all the wrong reasons probably in these organizations.
Like Russ, my best friends weren’t really numbers, but they were equations. I am trained in operations research and industrial engineering. We used to have in the School of Public Health a Division of Operations Research, which were faculty who had been involved early on, sort of bringing industrial engineering techniques into hospitals back in the sixties and in areas when health planning was in vogue, we had models for health planning.
Unfortunately, the economists won out because it went back to the marketplace. So, I have spent a lot of my career in operations research trying to apply it to public health and early on, I found that there were no data that fit in my models. So, that was a small problem back in the seventies. Nothing fit in, but you have beautiful models and I can optimize anything. I can tell you exactly what to do.
That got me involved in interest in information systems and management information systems. So, we were involved in the early days in the Columbia Medical Plan in Columbia, Maryland and East Baltimore Medical Plan. There would be encounter data systems in those plans for enrolled populations, capturing diagnosis in free text and coding it and doing all those things that are part of trying to figure out how do you really learn about patterns of care, patterns of practice, try and look at indicators of quality and access.
I have gone over the years and currently like at many places, at Hopkins, most academic institutions, they don’t give you pay increases. They give you more titles. So, I officially run two centers, neither one well, and chair a department. I am not sure how well I do that. I am looking forward to stepping down after ten years of chairing the department, going back to being a real faculty member again instead of — but half of my time is related to — Internet he area of mental illness. We have an NIMH center focused particularly on severe mental illnesses.
We did the work on evidence-based treatment recommendations for schizophrenia under a schizophrenia port. We are now focusing a lot of our energies on how do you promote evidence-based practice for schizophrenia and some of the new research I have, which I have found interesting is really trying to do research on that translation process.
So, this came out of the field of survey of psychiatrists in the State of Maryland and nationally, trying to look at their learning styles and willingness to adopt evidence-based practice. They aren’t coming running any faster than any other physician group, I can tell you.
We also are in the — we just got a new project to test out an Internet-based tool with the Foundation for Accountability that would allow a consumer, someone with schizophrenia, to compare their care to evidence-based standards and to get feedback and prompts. So, it helped empower them to have a discussion with their therapists, compare their outcomes to other people like themselves and see if we can create a demand for quality through consumers and families by being able to try and ask why I am getting this or why aren’t I getting that.
So, we are trying to work all sides of the system, the provider and the patient. The other part of my life since I have had a general interest in health services research, we have a study that for ten years we have been developing, a home hospital. We just came out of a national demonstration. Hope to have an article out in The New England Journal soon showing that you can provide an acute level of hospital care in the home for elderly, who meet clinical criteria and they are willing to accept it. The study actually picked up people in the emergency room, took them home. A doctor visits you in the home.
You go home with a nurse and what is amazing to me is all the outcomes are more positive than going in the hospital, which probably doesn’t surprise those people inside hospitals.
I also am co-investigator on a patient safety grant with Peter Prontovos(?) on ICU reporting of misses and near misses and had a chance to chair an IOM committee on keeping patients safe, transforming the nursing workplace. So, I have a deep interest in what is really a systems issue and sort of goes back to my fundamental roots of being interested in systems, which is why I am interested in populations since systems and populations ought to go together, right? Health systems ought to be serving populations.
In between, I do a few other things, but I was told not to take the whole afternoon.
DR. MAYS: Welcome. Thank you.
MS. HANDRICH: My name is Peggy Handrich and I come to all the committee work from the perspective of state government. I have been involved in the Wisconsin Medicaid program for over 20 years and, you know, data — I am reacting to your comment, Russ — data is not just our friend. It is our life’s blood. We purchase for value in Medicaid. We must. Funds are short. In our state, one in seven residents is on Medicaid.
So much of what we do affects particularly low income populations with a higher percentage of minorities and women. I have so many thoughts that I react to when I hear things. First of all, we have such pressures on funding and I hear so much of what we talk about in terms of data collection and I think so much about the pressures back home to just pay for services and to layer on top of that any new data reporting requirements is, you know, an unbelievable stressor.
We are in full-fledged revolt of our provider communities in the state not with regard to Medicaid reporting, but we have always had a very healthy reporting from hospitals and from physicians and they have had it. They have had it up to here. They don’t want to do it anymore. They see no value in it to them.
So, that is why I made the comments I made this morning about thinking about how to find intersecting interests because they are feeling the squeeze, too. Another reaction that I have is from some of the things that some of you around the table have had and I am aware that so many states now have offices of women’s health and offices of minority health. Our department, for example, has an interest in identifying racial and ethnic disparities in the provision of our services and figuring out what to do about it. I can just tell you my perception from the state perspective is people don’t know how to do that. They don’t have a clue. They have intuition.
The people who for the most part populate these tasks at the state level are not epidemiologists. They are not statisticians. They are not people familiar with the world of data and numbers. One reaction that I have is that it would be so helpful if at a national level, one of the things that could come out of some of the discussions would be, you know, very particular ways in which states could be better helped in gathering whatever information they have at their levels and making some sense out of it.
I will stop there. So, I am supposed to be the practical person on the committee. I do not have a Ph.D. or an M.D. after my name.
MR. SCHWARTZ: I am Harvey Schwartz. I work at AHRQ in the Office of Extramural Research Education and Priority Populations. As I am growing up, I am trying to become more practical. I look forward to developing a career where I get to talk long enough to fill up one week of Don Steinwachs’ time.
I guess I am either a priority population generalist or I am a person with a lot of very specific interests. I started out at least post-school — and school was a long time — having done some work on the economics of discrimination and statistical theories of discrimination in labor markets and moved into health. And numbers and people were my friends and the type of things I was interested in might have been the types of things that psychologists would study, but economists not generally.
I even did the thing with manipulating the characteristics on the resumes of — across the country and all that other cool stuff —
PARTICIPANT: You were ahead of your time.
MR. SCHWARTZ: And then I was fortunate to have somebody take me under their wing for awhile and I got into a fellowship program at NSF and I started to work on the precursor for ISDP and I did some work in methods and not real applied stuff, but looking at in kind program participation, moved into consulting and had a small stint
— you know, being a PI on some small contracts and things like that on vulnerable populations and then all the sudden somebody contacted me from this place called NCHSR. I had never heard of Health Services Research in my life and they said, you know, there are teams of social scientists and clinicians and they all work together and they use data and they do this and that. I said why don’t you come and make a presentation.
They came and made a presentation. Things worked out. That was in 1989, before we were the Agency of Health Care Policy Research, before we were AHRQ and I have been there ever since and I have worked on review. I have worked on project officer work. I have done intramural research and I still do that. I am currently in a new office that has a Division of Priority Populations Research and I work with some of the people on women’s health issues, on minority and racial and ethnic issues, on children issues, not to the extent I work in review.
I work on — I served as the chair of an advisory committee for health disparities collaborative assessment that we are doing in partnership with the Bureau of Primary Health Care and I am evolving. I am either a generalist or I am somebody with a lot of particular interests.
DR. MAYS: Well, we welcome all of them.
MS. GRANTON: Good afternoon. My name is Miriam Granton(?). I work in the Office of Disease Prevention and Health Promotion. That is the office that coordinates the Healthy People initiative. I have been there since 1996. I used to plan the annual health promotion conference and I currently now am coordinating the Healthy People progress meeting we have monthly.
I am really interested in racial/ethnic health data collection. As you know, one of the Healthy People second objectives is the elimination of health disparities and they have put forward the template by the racial and ethnic population groups. So, that is something that I have been really interested in and supporting.
I actually got to meet Harvey, though, a couple months ago. I did a short detail for six months, working a Dr. Cassom(?) was there and who is the senior minority health advisor there. I was the project assistant and they are a little bit — and I brought copies with me, just what our funding in 2002 on racial and ethnic health disparities. But I was very — it was a great opportunity for me to be there because I actually got to do a method analysis, too, of health insurance — the population groups. I was finishing my MPH at Johns Hopkins. So, I actually had Professor Steinwachs as one of my professors there.
But I am really glad to be part of this committee. I have known about the committee and have in the past sat in, just as an observer, but really happy now to staff it.
DR. MAYS: We welcome you.
DR. CAIN: I am Virginia Cain. I am the acting director of the Office of Behavioral and Social Sciences Research at NIH, which is a program office within the Office of the Director. We have responsibility for behavioral and social sciences across NIH.
My own background is I have a couple of degrees in psychology and then my Ph.D. is in sociology with a specialization in demography. So, numbers are my friend, too.
Being that my office has responsibility to a certain extent coordinate behavioral and social science research, the kind of topics that we take on are very broad and generally are ones that are of interest to a variety of the institutes across NIH. Health disparities and particularly a behavioral and social approach, the question is one that we have taken on in the past and are continuing to do so to try and coordinate some efforts there.
Other issues that come up are methodological development. That is of interest across a wide number of the institutes and I have been organizing some activities and methodological development across NIH, human subjects issues, particularly those that are perhaps not unique to behavioral and social science, but that there may be a slight different twist on them, kind of fall within my area of work and I have been working on those as well.
A number of the challenges that NIH has faced recently in terms of some of their sexual behavior grants have fallen within the responsibility of my office and we have worked on that. In fact, that is all right because that is one of the areas where I do my own research . My most recent research has really been on menopause and sexual behavior as women go through menopause.
DR. MAYS: Welcome. Thank you.
MR. HUNGATE: I don’t know where to start. The difficulty I have with things like this is I never remember any useful information. I can start this by saying I am a retired First Lieutenant in the U.S. Army Signal Corps, 04077046.
When I got through with that, I needed to get a job. So, I went to Harvard and got an M.B.A. That got me to Hewlett Packard Company and I am a graduate of Hewlett Packard after 31 years and am now a Medicare beneficiary, grandparent.
I would characterize my biases and behaviors very different from yours. I am a just do it person. I am not a researcher. I think about systems and how systems work and I try to think about interventions that will make them change. And I don’t need a lot of evidence. I mean that in terms of my training as a manager, as a leader of organizations, as somebody who had to make things happen.
Hewlett Packard had to do things to survive in a competitive world. I look at health care and the magnitude of change that it needs and I say, hey, they need more people that just do some things than study things. So, what I think I bring to these kinds of discussions is the challenge to action.
My agenda really is a measurement agenda. I started out at Hewlett Packard in cost accounting. So, I learned some numbers. I moved from that numbers world to the marketing world and ended up managing our marketing of medical products worldwide. So, I began to learn the health care instrument business and the health care system from the standpoint of a vendor. The next thing I learned was quality improvement processes, as we put those into the business that I was managing.
After that, I ended up down here in Washington working on health policy and I think it is this perspective that I most bring to discussion. It is a quality perspective which came about from having to reconcile three different interests; the corporate product interest in selling to a system, the corporate cost interest around the cost of health care and the individual interest around health. You can’t reconcile those unless you deal with quality. You can’t do it on cost.
So, my argument is to measure health data as the quality piece of how we change the system and I argue for the reconciliation of the population view, the provider view, the payer view and the patient view and getting those sufficiently reinforcing that they actually help each other do the job better. So, that is what I bring to it and it is a funny way of describing it, but it is my day job for which I am unpaid.
DR. MAYS: Well, welcome and thank you.
DR. ROBBINS: I am Aldona Robbins and I am a member of the Board of Scientific Counselors, National Center for Health Statistics, CDC. I am learning how to say that. I am relatively new to this, which is why I am here and I am basically more of an observer.
My day job, I am a — my husband and I have an economic consulting firm, Fiscal Associates. I come out of a background awhile ago in treasury and labor. I am an economist by training and what I have worked on is essentially quantitative — another numbers person — analysis of fiscal policy, including health policy, such as looking at questions, such as the determinants of health costs and also the relationship between health and the rest of the economy.
I was telling Bob before, I am very much more of a fourth kind of person and the reality is that health care is now an important sector and it will become an increasingly important sector of our economy, which would have implications for things well beyond simply health, basically the health of our economy in general.
As I have tried to do research, as we heard this morning, I guess everyone was at the session this morning on the population health, the three presenters that did such a great job. There are — there is just this wealth of data on the one hand. I mean, I think the one who was it, the first presenter talked about 152 different data sets out there state by state. Yet, when it comes to answering key questions, it is often times impossible to find that data that you need. So, as an economist, I look at this issue — I am very aware of having to make unlimited funds, scarce resources kind of thing. So, anything that can be done to rationalize health data and it may be a question of taking instead of — I am sensitive to Peggy’s concern about, you know, you layer on another requirement to collect data of a different sort.
Well, can we take in a sense — can we take resources that are already being spent and reorder them a little bit and come up with a better product? So, there is really more a matter of rationalizing the data that we have and seeing how can we organize it so that it answers the questions that need to be answered.
You know, from my perspective, again, as an economist, I see the socioeconomic characteristics as an important part of that job, of that equation for health care. So, that is why I am interested in what this committee is doing, but, again, I would ask — argue — ask everyone to be sensitive to, do we just want to collect one more piece of information to meet this special need or how can we take the resources that are already being spent? Is there a better way to do — can we do what we are doing or can we take the resources that we are using now and use them in a better way?
DR. MAYS: Susan, want to introduce yourself?
MS. CANAAN: I am Susan Canaan. I am a writer.
MS. JACKSON: Debbie Jackson. I staff the national committee. I am working with the National Center for Health Statistics, CDC, previously at the Office of Women’s Health at NIH and prior to that PROCEP(?). I come to this — Graduate Medical Education Administration, having been in Chicago with the Accreditation Council on Graduate Medical Education starting up the requirement special and general requirements for internal medicine — programs and that kind of got me into this whole field. Always had an affinity for population health and health — to have this whole truth working in this field.
DR. EDINGER: Actually I started out my career as actually using some of Bob’s equipment, but it actually worked okay. So, I have no complaints about that. I guess they got me out of the chemistry. I came into the government basically in 1976, which is so long ago most of you probably weren’t even born. I have actually known people nobody even heard of as Secretary of HHS.
My first assignment when I came into the government was to respond to some letters I wrote complaining about the government regulations. I have worked probably almost every place. I have been at HRSA. I have been working on — the old Bureau of Quality Assurance, working on the regs. I was over in HCFA before it was CMS. I worked on a lot of these regs in serving certification.
I worked on the federal drug testing regs and even had the privilege of being in a live interview with Geraldo Valera and Abbie Hoffman because — the public affairs office said there is somebody on the line that would like to you. Then I found out I was on live television.
The first question was is the federal drug testing program really a hundred percent accurate, which nobody believed, including me. But anyway it was an interesting experience in conveying the government’s current thinking on that position. I then worked on details to the Congress. I was up there three or four times on detail, working a lot of Medicare and Medicaid issues.
In between, I actually worked on the first Healthy People report, believe it or not. Had to review a lot of stuff. I worked on a couple of chapters when I was at HCFA doing, I guess, real stuff and not real stuff, regulatory payment stuff.
I think came to AHRQ and worked on the patient guidelines, did not work on the famous back puns, although I could probably use them now. I worked in the CIT, which is where I worked with Harvey in the information technology and now I work in the patient safety and basically do a lot of grant and project officer or contract work on patient safety issues.
I am getting towards — in a few more years, I will be approaching with Bob, I will be becoming a senior citizen on Medicare and be explaining about other things.
DR. MAYS: Welcome. Thank you.
MS. WHITE: I am Gracie White. I am in-house staff for the Subcommittee on Population and the Workgroup on Quality. I am here to get you people into Washington or whatever —
DR. MAYS: Thank you.
Agenda Item: General Discussion
Okay. This exercise I think was important for us to see in terms of starting off saying who is here at the table, also to understand the perspectives that we want to bring to the work. What I would like to do is to make sure that when people have perspectives, that they have passion about, that we make sure there is room at the table for them. We may debate them but they still should have room at the table.
So, I really appreciate the fact that people put them out there because I think it helps us then as we are thinking about bringing a product to the table to remember different things and that — you know, it makes it such that we try and figure out how to incorporate it or else how to answer what we think you might bring up.
So, I appreciate that you really talked about the kinds of things you are really interested in and also your past because I think in terms of some of your past work, there are times at which we only think about what you do now, but then can find out that in a pinch, you know, we may need people who do IRB. We may need people who do lots of other things and that we can at least, you know, come to you to get us started on some of those issues. So, I appreciate that.
Here is what we need to do in the time that we have left. One is I want to describe the process that we need to follow in terms of getting our report done. Susan Canaan is here. I am grateful that she was able to join us as I kind of outlined the process and what I want to do in terms of a timetable.
As I said in the meeting earlier, this is a report that will be from our first hearing, which was back in February 2002. I think at that point in time, everything that we thought should be done we threw into this report in terms of the 66 recommendations, but as you have well heard that that is not going to fly anywhere on this committee. So, we will be a little more humble.
What I have given you is actually just the recommendations and I am going to tell you why. There have been points at which there have been comments on the full report and a lot of that to see that they get integrated into in and cleaned up. I have done some of that and I am going to work with Susan Canaan to do the rest of that. So, that is sort of giving you the report, even though you are new and then giving you another one right of way that is a changed one, it doesn’t make sense.
Let us clean up that part of the report because that is really the substantive part. That is the history and the background and all that and a Lot of that is wordsmithing more so than it has ever been the concerns about what the substance in the report was. Where we really need as a group to spend our time, will be on the recommendations. So, let me give you a suggestion of how would like to approach this.
If you look at what is known as overarching recommendations, we have so many recommendations that we have to come back and say let’s have some overarching ones. I think what we need to do is to first of all decide whether or not we are going to take the rest of those recommendations and in some way put them somewhere like an appendix, not call them recommendations but call them issues of concern or, you know, whatever, some title we are going to give it or whether we are just going to get rid of them and their specifics and try and really come up with a pithy — notice the word — pithy, not long and drawn out, but pithy set of recommendations that will actually be all that there will be, which means, you know, we might have six, eight or something like that.
We might go through them and try and say, what is it that we are really concerned about, short of needing to have every detail and feel like we have covered every angle about, say, translation or targeted surveys, that we just boil it down to, you know, if I could only have one sound byte, what would it be in terms of getting this out to get somebody to pay attention to it. So, I think that is a decision that we are going to have to make.
I am going to tell you what I think we should do, which is to get the — you know, get rid of what is known as overarching. Come up with a few very central and key recommendations and then make a decision after we see what we have stripped from the other places, what we want to do with the rest. We either can decide that the rest are covered as discussion items in the substantive part or we can decide that, you know — one of the things sometimes when I am working with like the students, I say, kill your darlings, meaning you think this is just so wonderful but take another look at it. You might want to get rid of it.
I know we worked hard, but as to whether or not we want to fold this into a substantive discussion in the report or if we really do just want to have some appendix that talks about issues of concerns. So, I just want to make a few comments about what starts out as the overarching recommendations and tell you, because I was kind of prepared today and I went, oh, that is not a good thing to do, just to like discuss them. I said, no, we need to discuss them as a group. I think that the first recommendation that we have is one that I want you to consider. I think it really does sum up a lot of what is written in the substantive report.
So, you know, I am going to suggest maybe keeping that. The second recommendation I am going to suggest keeping. It needs to be edited because we actually came up with several other departments, like Commerce, Labor, Education, because they all do significant kind of data analysis that are of interest to us.
I think we ought to delete this thing about bridging. I think it is a minor issue. It is not a major issue and I also think that, you know, it is being done. I think we ought to delete this about telling people to do several years of data because you can’t — I mean, most people know that, you know, if the data is not there and you see there are several years — put it all together and do it. I mean if they haven’t discovered that then, I think, it is beyond us in a major report to have to say that.
I think the next one, which is the department has urged the development of system strategies and mechanisms, I do think we want to think about keeping that, but I think what we want to do is to think about all this testimony that we have heard about data centers. So, it may be that what we want to do is get specific about making data more available.
Also, one of the mechanisms that people are doing more and more — and this is where the project that Suzanne Haynes, for example, has worked on — is this whole notion of having data available where people can actually go on and do a query of the data itself, you know, and that puts it in electronic format.
So, I think we want to think about making a recommendation maybe for that particular item where we think about how technology, as opposed to having to have physical centers but how technology might be brought into play to allow people to have greater access to data, especially when we start thinking about not the researchers but kind of the community groups, the states. For their purposes, a query system may be actually quite fine. Then we don’t have to worry about this, you know, privacy and confidentiality because the query system will not allow you, you know, unless you are really good to break the code, to be able to, you know, get the data down to the point that you would be able to identify anybody.
So, we just need to think, I think, a little bit more about technology for that particular one. I would delete this next one about the National Academy of Science studies. I think that is another one of those pie in the skies. Then I would suggest that we think about adding as a major recommendation something that talks about linkage or interoperability across data sets so that we can begin to maximize. When one data set does not contain what is needed, is it possible to be able to answer a question by either the capacity to link or the capacity to link or the capacity to have a question be similar enough that you, therefore, can look at it in three or four data sets and be able to get an answer.
So, I kind of put those as the major ones. I think people should think about this. I think the process that we — and then look at the others, you know, the other — I think I gave you all of them 63 — oh, 69, it grew.
MR. HITCHCOCK: Geospatial, I guess under —
DR. MAYS: I would agree. Yes, the contextual issues, yes. Or we might end up having it separate, but I do think that the issue of contextual data — somebody today said something — who was it that said about the — it was Barbara, Barbara Starfield in her presentation. What she was saying is that if we really want to deal with health, we need to deal with people’s problems. It really is the more contextual issues. It was interesting what she said. I started thinking about these data sets. That is the problem. A lot of times we can’t do anything other than talk about health status, access to care, but we can’t talk about what are you really concerned about here and, you know, what the issues are that may lead you to have this particular health status.
I think that that is good. It is the geocoding and contextual issues, I think either it will be within this linkage thing or — because the linkage sometimes will take you to those other data sets or it is something that is separate. I am suggesting that you look at the other recommendations, see if you think that there is something that should be a standalone, you know, this would be the specific set of, you know, recommendations that would be up front in the executive summary.
If not, you know, that is fine. We will work with these, which would give us I think about six, five, six, something like that. One, two, three, four — yes, I think maybe four to six, you know, recommendations. The first one has several things imbedded in it. So, from a writing standpoint, it will be a matter of whether we unhinge those or not. That is why I am kind of giving these this range of possible recommendations.
I am going to, particularly because of our size now, I am going to do two things in terms of the way of working that I think will be more efficient. One is I want to break us into subgroups to work on specific items and there is enough staff here now to be able to do that. For things like when we come to the point of reports, there will probably be a subgroup to start working on them and then we will try and have a full group to opine on them so that, you know, we don’t walk into the full committee without you having had a chance to comment on things.
So, I am going to ask Gracie to start setting up a schedule and what I would like to do to have regular times that we know we are going to have a call. We really have enough work. We now have enough staff to also be able to do that work that I think we can do that on a consistent basis.
So, the next thing that you will get will be — we will clean up the substantive part of the report, get that out to you with these recommendations. I will send you an e-mail giving you a time frame of which to respond about whether or not you have recommendations that you want to see moved up as a main recommendation. So, that is what we will do in terms of this report.
We are committed to finishing this. I don’t want to be in the room and they say nobody is in the room anymore that remembers those hearings. That was just so salient to them. We can’t do that because you see it makes it very hard on everyone. I really appreciated that.
Now, let me talk about the other work that we have begun that we have on our plate that I also would like to try and move forth. The first thing that I want to bring to your attention is the discussion that we had about mental health statistics because I do think that there is some time factor there.
But NHANES is one of the reasons that this got put on our plate because there was this potential issue of NHANES dropping many of the items that it had asked over the last — is it ten years? Are there ten year cycles or six year cycles?
MR. HITCHCOCK: It is continuous right now and before that it was sort of sporadic.
DR. MAYS: Yes, I can’t remember how long it was, but anyway they have been asking these mental health questions and I happened to be at the meeting and — well, those are going and those were going because the funder of that, which is NIMH, they probably in truth — I mean, I can understand their perspective. They have several epidemiologic studies in the field. So, the CD(?) which was what was there, I think they are looking for that data to come in from these studies.
But it really raises the question and I think that is really the issue for this committee is are mental health statistics expendable? Should we not, for example — we would just never say we will get rid of blood pressure, we will get rid of — I mean, there are certain things that we collect no matter what. We even collect them in the outdated methodology because we want to consistently have them. I think this committee needs to weigh in on bringing mind and body together, that it is — you know, it is that physical health cannot be thought of as merely the physical — that health cannot be thought of as merely physical health, but that, again, we need to be moving towards this notion that mental health and contextual issues are very important in terms of understanding the development of physical disorders.
So, I think that is No. 1. The other issue — I think that is the most critical thing is to get that, even if we miss this window to get this data in, I think it is important to have that discussion and to have that discussion as something that is taken up by the department level.
PARTICIPANT: Because it is bigger than just HANES.
DR. MAYS: Yes, that is what I said. So, even if we can’t rush and get questions or that HANES loses those questions, this is, I think, something where you do want the attention of the Secretary and you want that to sort of permeate throughout, you know, your plan for the department’s collection of data on health, that there is some component that really addresses mental health and I would like to kind of get in there the contextual issues of health.
DR. STEINWACHS: Just to prove that occasionally I listen to my chair, I did talk to the people at NIMH, who were involved with that portion of the NHANEs and just very quickly, there were concerns in the new sort of rotation sampling in NHANES or the adequacy of the sample size. But I was surprised to learn the current that is there was really only for adults under 39 years of age. It seemed to me that the discussion is exactly what we want to have and that is how do we make mental health central to all of health? Because what this was doing was useful but it is no longer a high priority for NIMH, that age group. So, they are really interested in some of the other age groups, it really got down to it.
So, I think if we could have that broader discussion, that would be very good.
DR. MAYS: I think we still should determine whether or not there is a possibility for there to be some items on NHANES because the other issue is that of all the survey, NHANES has biological data and, you know, you can look at certain disorders like cardiovascular disease and know, you know, there is significant enough data now to know that there is a relationship between, you know, stress, cardiovascular disease. So, I think that, you know, we should move ahead with that.
What I would like to do is, Don, you were kind of taking the lead on that, is to have you continue working on that and we will kind of pull together, you know, because there was a staff person — she is in your office now — Cille —
PARTICIPANT: Cille Kennedy.
DR. MAYS: — Cille Kennedy to see whether or not that is appropriate or whether we need to have SAMHSA or someone else available.
MR. HITCHCOCK: She is actually staff of this subcommittee still.
DR. MAYS: Oh, okay. Then definitely we will work with her. So, we will kind of plan that out.
MR. HUNGATE: I don’t have familiarity with what is in NHANES. I liked what I heard Barbara Starfield present today as a definition of health and that includes how you live and that leads to your mental condition, it seems to me.
Now, there has also been talk about functional status. Does NHANES cover things like health status and functional status?
DR. MAYS: I do think there are some functional status — I shouldn’t say that because I don’t know what is still on. I remember what we have discussed, but I don’t remember enough of what is or what is out.
MR. HITCHCOCK: If things change over time, they typically stay out of the survey. If you have something like hearing disorders or visual problems or even dental problems, if the prevalence is sort of the same over the years, then there is an argument for maybe not measuring them in HANES every cycle of the survey.
PARTICIPANT: What do you mean by functional status? What kind of measurements —
MR. HITCHCOCK: Actually at one point in the survey, they actually had things like doorknobs —
DR. STEINWACHS: I don’t think they are quite as broad as sort of a physical, mental and social domain. So, it is much more the traditional physical limitations that they do capture.
MR. HITCHCOCK: The reason why they limit it to certain age groups is because they have got a finite period of time to perform the examination and they want to make sure that they address people who are in the poorest health and tend to be the oldest people, so the younger people will get some of these miscellaneous sorts of — you couldn’t burden an 80 year old person. It would be very hard to do.
DR. STEINWACHS: But do you know, Dale, that I just learned the other day — things surprise you always — the highest suicide rate is among men over age 65. I always thought of it more in teenagers. They are the second highest, I think. So, it is an interesting kind of issue about where it gets left out relative to what you might say is a clear need for —
DR. MAYS: See, and I would argue that had there actually been somebody, who was either, you know, trained in psychiatric epidemiology, they would have really argued about those variables being at the next age range, where you see the kind of sloppy increases as effective disorders, you know, and given the rate of depression currently and the cost to us of depression and what have you, but anyway — but, okay, so we will —
MR. HUNGATE: Thank you. That helped.
DR. MAYS: We will take care of that.
PARTICIPANT: Can I just add that the other — also has mental health questions, I think, were removed by IRBS after September 11th. They had added a series of questions — when I was in Rhode Island. The issue was with the depression module, the definition — coming up with a concrete definition of mental health status, that all the experts agreed upon, is that a conflict in the field itself was one of the Healthy People leading health indicators and it pretty much got scratched after the first or second year because there wasn’t a continuity in the measurement with the instrument that was being used and other surveys were trying to adopt it, but it didn’t have the backing of the actual person who formed it. He no longer felt that it was the best instrument.
DR. MAYS: I have a feeling I know who that is, but I am not going to put their name out there because I have heard that story before.
I will look at the IRFS. That is a little different because of the state role in it and who pays for what and —
Virginia, can I ask you to also work on the mental health? Okay. Great.
Health plans. We sent a letter to the Secretary saying that it would be useful to see the department take a leadership role in the collection of data on race and ethnicity in health plans. Today, as you heard, when the quality report was put on the table, there are some very specific recommendations that come out of quality that we have talked about once before, that I think are important and that is kind of the collection and reporting of data on race and ethnicity and primary language, where do collect that data, kind of how to do that, some of the issues around it and whether or not there is, you know, kind of the will for this for the private sector to do this.
So, that is one of the ones — we were waiting to see what was going to happen on quality, one of the ones that I think we should engage in some planning to move ahead on.
MR. HUNGATE: The Quality Workgroup felt that it didn’t have the resources to push that from its own initiative, that it had to come here if it were to be addressed in any substantive and complete way.
DR. MAYS: So, what I would like to do is to put that on the table, to figure out, well, definitely quality. I think probably this is — would be in the — in Harvey’s ball park. I have to figure who else. I mean, some of these — I sent you an e-mail about these things and some of these you also need to self-identify. I am just trying to remember what I heard and know a little bit about was on your plates to do that. But that is the other thing that we are going to put a subgroup together.
That group will probably end up having to have hearings. I think it will be important for us to actually bring the health plans in, understand what some of the barriers are, understand what Aetna has done. So that, I think, is definitely on our plate.
The National Childhood Study, we — the National Longitudinal Childhood Study, I think Leslie Cooper was really the person spearheading that. Our letter just went out recently. So, I think we just need to be on watch and figure out what is going to happen. Have you heard anything, Virginia, because were cc’d on that?
DR. CAIN: No, I was cc’d on it and I got the cc. So, I am assuming it got to Dwayne, but —
DR. MAYS: Oh, okay. I didn’t know whether or not Dwayne would go and ask you what is going on or something.
DR. CAIN: No, he hasn’t.
DR. MAYS: So, we are on watch on that one, but that is definitely Leslie Cooper and Virginia are kind of the people for that.
One of the things we keep saying we want to do and we haven’t been able to do, but we have like operated around the perimeter on it is really to talk about some of the geocoding issues particularly in terms of for racial and ethnic minority populations where we are trying to get data and the group turns out to be very small usually in a survey. We worry about privacy and confidentiality, but we say we want all this geocoding.
So, we have on the one hand a great desire and it is an important issue to think about this context that will help us to know more about the health disparities of the group, but we are also faced with limitations. Some of those limitations have to do with privacy and confidentiality. I think we were beginning to try and explore whether it is time for a change in some of the rules, whether or not there are other ways to think about this. I think we have always said let’s try and make as much data available as possible, but I think we really do need to think about this recommendation of geocoding, thinking we are really helping the group, when, in reality what happens is that you often can’t do it.
So, I think that that is going to take some thoughtful thinking on our part and I am not sure exactly where we are going to start with that and that may be hearing — before we start to have hearings with people outside, but hearing from the federal agencies on what the rules and regulations are, what they see as the barriers, how much room there is, whether or not it is really a federal regulation versus an agency way of working.
I think we need to discover that before we go off too far.
MR. HITCHCOCK: Actually, we have got — at the NCHS research project this year, NCHS is interested in geocoding the HIS. That is the Health Interview Survey down to the household level. How will we access? You know, that remains to be worked out, but they will have those data available.
DR. MAYS: See, I think that is good to hear they are thinking about that. Then, I guess, the group that you have that will have a report — when do you expect a report on the geocoding project?
MR. HITCHCOCK: The part that I am working on, in July.
DR. MAYS: Oh, perfect. Okay. I know Russell has been very involved in this, definitely Russell and Gene. So, definitely, I think, you know, those are areas that we should — but we have to plan it. What I want to do is to make sure that these are areas we want to work on, and sit down particularly with the lead staff and say, okay, here is how we do it, you know, and here are some of the time lines because I need to know when various things are coming in and if any of these have big pushes behind them.
MR. LOCALIO: I just want to remind people that this morning, Dan Friedman mentioned that in Canada and Australia — I know it was Canada, I believe it was Australia — responds to their national surveys are asked to give permission on all of their data to other sources and said there was a very high approval rate. We haven’t even investigated that. We have not investigated that with anyone as to whether that would be feasible or permitted.
DR. MAYS: There are a lot of things that we can put on the table. You know, I am not willing at this point to just accept that, you know, we have all these regulations about privacy and confidentiality because I think we are beginning to find — some of them may need changing. It has been awhile.
MR. HITCHCOCK: We are talking laws not regulations in most cases, like NCHS —
DR. MAYS: There are laws but then there are things that the agencies decide. Yes, I am not talking about trying to change the law. Not yet. I want to know about the other —
DR. LENGERICH: I would also encourage us to look at specifically in the cancer world, too, because they have — there was a conference not too long ago, looking at the information systems for cancer and one of those issues was the geocoding privacy and confidentiality. In most states, that is a reportable condition. So, it is not within the same boundaries as the federal agency — federal regulations. It has to fall within public health reporting.
DR. MAYS: All right.
Two other things. Nancy Breen is not here, but that is actually the person that I would talk to about this is that we have talked about potentially pulling together a report on our hearing on API and Native Hawaiian populations. In the event that we can go forth with that, there is — there is a new journal on API and they are doing a special issue on health and they had — because we had the hearing, they had commented that it might be useful if there was something that, you know, based on the hearing that we might want to contribute to to that journal.
I have to find out more about the — I saw the deadline. I forgot that I needed it for here, but it is maybe December or something like that. So, that may help us to kind of get our thinking together for a report is if we could do, I mean, you know, an article would be much shorter than a report. Then maybe we don’t need a report. Maybe we just need the article kind of thing, but I know that Nancy has been doing a lot in this area, both with Paul and some other stuff. So, I would say let’s talk with her on that and then I will check on the length of that and then, again, we will see, you know — of others.
That is it. Were there other projects that people really — that we have actually talked about that I have forgotten — I have a feeling in the back of my head that there is — primary language stuff.
MR. HITCHCOCK: Language stuff or maybe income wealth sort of —
DR. MAYS: Oh, yes, that was it. When we started health disparities, there were these other things, which we didn’t know enough about and it is primary language and socioeconomic position. I remember we kind of put it on hold because at the time, NIH had the big meeting — remember the meeting that Reynard(?) had on —
DR. CAIN: Health and economics about two years ago.
PARTICIPANT: It was the economic perspective on disparities —
DR. MAYS: Exactly and what we — and I think at the time when we were discussing it, we wanted to wait until that report came out and then you have another report at NIH, which was done by NICHD language. So, we kind of felt like we don’t need to redo this as much as what we need to do is to kind of deal with the two offices that have done this and see what we can learn from that. So, yes — I think, Virginia, I will work with you on — like at least getting that for the committee and then seeing where we want to go.
Okay. Anything else? Peggy, yes.
MS. HANDRICH: I have a process question. I have been scanning these recommendations and I see that there are a couple here regarding new reports and requirements in Medicaid. I am wondering if the ground rules are that these draft recommendations don’t get discussed with affected parties until they come out in a report or whether or not you all would like to have these things reviewed. (a) I don’t know CMS is aware of them and by state Medicaid programs in advance of coming to some decisions about them. It is a process question.
I think that same question could apply to some of the other recommendations, too, and the connections that people around the table have to specific things.
DR. MAYS: That was kind of what came up today in terms of the quality report and it is always like do we do it and then go back out and ask people or do we just put it out there and then wait for people to respond.
I guess my suggestion would be is that if there are ones that you think are either — see, for me the criteria would be — because the reason they are there is we heard them in hearings, but if what we are recommending you think would be particularly burdensome, if you think what we are recommending would be particularly controversial or if you think we don’t have it right, then I think what we do is two things, is we now are at a point where we almost have staff from many of the agencies. So, we have FEARMES(?) as a liaison and Nilsa is actually — Nilsa Gutierrez is a member, I mean, a staff member of this group that we could also ask, but if you think that they are really kind of — when you look at it, if you think, well, I think we ought to hear from people because I think that this just won’t fly. Then I think we should put that on the table and have a discussion about it.
Some things, I think, we can go with and deal kind of with the response because response may be at the level of a federal agency. You know, it may be individuals, but if there are things that you think will be particularly burdensome or problematic, those are ones that I would like us to give consideration to, whether we need to go out and get more information about.
MS. HANDRICH: Well, I think that the recommendations would be considered very important. So, it would be very — it would be a very good idea, I think, to go back to CMS and then go back to the committee structure that they have with Medicaid directors to just get some kind of official reaction to the ideas, a technical advisory group that supports the National Association of State Medicaid Directors and there are other things like that, too. So, what I could do is I could go back to that association and make them aware that this is being considered and, likewise, we could make sure that CMS knows about it.
DR. MAYS: Okay. So, there is a — I would like that. Here is what I am going to suggest is that when we decide what we are keeping, if we have kept that, then I think that is one we are — let’s look at that process and see what the frame is for being able to get some comments.
MS. HANDRICH: They won’t be able to turn it around on a dime.
DR. MAYS: Oh, no, no, no, no, no, no. That I understand, but then we go to the committee, we might say and we have these other things, but we are going to put these other things on hold for, you know, the next meeting or something like that. We just want to be able to convey what the — but I like that —
MR. HITCHCOCK: We even need — because of the tone, I think, too.
DR. MAYS: Okay. Well, I think we have a very full plate, but I think we have a very full table. So, that is why I hope in terms of, you know, the items that we now have, that we really can get to work on them. The next step that I am going to take is to draft some e-mail to kind of break these down into what I think are manageable and then, again, you are going to get this — well if you identify yourself — if you don’t identify yourself, then I will come and identify you. Listening to you today, I have a much better sense of, you know, what is your range of expertise, what your passions are about and for some of you what your day job is like. So, you know, all that will go into consideration.
Justine, would you like to introduce yourself? You didn’t get a chance to do so earlier.
DR. CARR: I am Justine Carr. I am a physician at Beth Israel Deaconess Medical Center in Boston and I work in health care quality.
DR. MAYS: Welcome.
MS. GREENBERG: I am Marjorie Greenberg from the National Center for Health Statistics, CDC, and the executive secretary of the committee and have not yet figured out how to be two places at once.
DR. MAYS: Okay. If there is nothing else, what I would like to do at this point is adjourn and thank you all for your time.
[Whereupon, at 4:34 p.m., the meeting was concluded.]