Hubert H. Humphrey Building
200 Independence Avenue
Washington, D.C.
Overview of Relationship between Federal Government and Insular Areas - Richard Miller
HHS Regional Health Initiatives and Activities
Findings from IOM Report - Jill Feasley
Panel on Federal Programmatic and Data Activities with the Insular Areas
Panel on Health Data Needs, Issues and Perspectives
LISA I. IEZZONI, MD, MS, Chair. Professor, Department of
Medicine, Harvard Medical School, Beth Israel Deaconess Medical Center,
Boston, Massachusetts
HORTENSIA AMARO, PhD, Professor,
Department of Social and Behavioral Sciences, Boston University School of
Public Health, Boston, Massachusetts
RICHARD HARDING, MD, Medical
Director, Psychiatric Services, Richland Memorial Hospital, Columbia,
South Carolina
VINCENT MOR, PhD, Director, Ctr for
Gerontology and Health Care Research, Brown University, Providence, Rhode
Island
DAVID TAKEUCHI, PhD, Associate Professor in Residence,
Neuropsychiatric Institute, UCLA, Los Angeles, California
M
ELIZABETH WARD, MN, Assistant Secretary, Epidemiology, Health
Statistics, Public Health Labs, Washington State Department of Health,
Olympia, Washington
MARJORIE GREENBERG, Executive Secretary to
the Committee on Vital and Health Statistics. National Center for
Health Statistics.
JAMES SCANLON, Executive Staff Director to the
Committee on Vital and Health Statistics. HHS, Data Policy Office.
PETERJOHN CAMACHO, MPH, Chief Public Health Officer, Dept of
Public Health and Social Services, Agana, Guam
ROBERT DAVIDSON,
Deputy Director, US Public Health Service, Region II, New York, New
York
AMATO ELYMORE, National Health Statistician, Department
of Health, Education and Social Affairs, Palikir, Pohnpei, Federated
States of Micronesia
JILL FEASLEY, Takoma Park, Maryland
MARY ANNE FREEDMAN, Director, Division of Vital Statistics,
National Center for Health Statistics, Hyattsville, Maryland
JOSEPH
ISER, PhD, Director, Pacific Health and Human Services, US DHHS, San
Francisco, California
DENISE KOO, MD, MPH, Director, Division
of Public Health Surveillance and Informatics, CDC, Atlanta, Georgia
ROBERT
MAYES, Health Information Specialist, Health Standards and Quality
Bureau, HCFA, Baltimore, Maryland
NOREEN MICHAEL, PhD, Director
of Health Statistics, Virginia Islands Department of Health, Kingshill,
Virgin Islands
RICHARD MILLER, Office of Insular Affairs, US
Department of Interior, Washington, D.C.
MICHAEL L MILLMAN, PhD,
MPH, HRSA, Rockville, Maryland
MICHAEL MONTOPOLI, MD, MPH,
Office of Occupational Medicine, US Department of Energy, Germantown,
Maryland
NICK NGWAL, Health Services Administrator, Ministry
of Health, Republic of Palau, Koror, Palau Island
MAGDALENA
SABLAN, Manager, Health Planning/Statistics Ofce, Dept of Public
Health, Saipan, Northern Mariana Islands
JONATHAN SANTOS, Office
of Health Planning and Statistics, Ministry of Health and Environment,
Majuro, Marshall Islands
FALE S. UELE, Department of Health,
American Samoa Government, Pago Pago, American Samoa
ROYLINNE
WADA, Department of Interior
RUTH E. ZAMORA, PhD, Secretariat
of Planning Evaluation and Statistics, Puerto Rico Department of Health,
Commonwealth of Puerto Rico, Santurce, Puerto Rico
LYNNETTE ARAKI, National Center for Health Statistics
CAROLYN
M. RIMES, Office of Research and Demonstrations, HCFA, Baltimore,
Maryland
OLIVIA CARTER-POKRAS, PhD, Office of Minority
Health, Rockville, Maryland
BRENDA EDWARDS, PhD, NCI, NIH,
Bethesda, Maryland
AARON O. HANDLER, BA, Demographic
Statistics Team, PST, OPH, Indian Health Service, Rockville, Maryland
DALE HITCHCOCK, Division of Data Policy, Office of Assistant
Secretary for Planning and Evaluation, Washington, D.C.
DAVID
BROWN, for RONALD W. MANDERSCHEID, PhD, Center for Mental Health
Services, Rockville, Maryland
BEATRICE ROUSE, PhD, Office of
Applied Studies, Substance Abuse/Mental Health Services Administration,
Rockville, MD
YVONNE E.R. BENNER, for HONORABLE CARLOS ROMERO BARCELO,
Member of Congress, Resident Commissioner, Puerto Rico, 2443 Rayburn
Building, Washington, D.C.
BRUCE GRANT, SAMHSA
REBECCA
SAUER, Census Bureau
DONG SUH, MPP, Asian and Pacific
Islander American Health Forum, San Francisco, California
DR. IEZZONI: There are a few folks still signing in. I don't mean to rush you, but we would like to have time to hear from everybody this morning. We have a wonderful and full program.
People should partake of refreshments up at the front of the room at any point during the meeting. We are not aiming to be terribly formal here. We hope this will be a good two days of kind of talking with each other and learning and thinking about issues that we share an interest in.
Before we start with introductions, I would like to formally thank our staff and others who have helped put together this meeting.
Many of you may not know that we actually have been working on this meeting for a year and we are really excited that it finally has happened, and we are live on the internet, even, as we speak right now. So, people should keep that in mind, that the world is listening to us as we talk.
My thanks, first, to Roylinne Wada from the Department of Interior. Thank you, Roylinne, for all your help.
Lynnette Araki, obviously, from the National Center for Health Statistics, has been a wonderful person in terms of getting this meeting together, and she cooked this weekend. The bounty that you see in the front of the room is because of Lynnette's good offices.
I would like to also thank Joan Turek from the Assistant Secretary for Evaluation and Planning Office. She was instrumental in getting together this meeting and the briefing materials.
I would like to thank the Office of Minority Health for travel support for the Pacific representatives.
Finally, the Department of Veterans Affairs, for the internet connection that we are all benefitting from today.
I would like, as the National Committee on Vital and Health Statistics is wont to do, go around the room and get introductions from everybody.
Then I will take a few minutes -- hopefully a few minutes -- to talk about the purpose of this meeting, and then we will start with our very packed program for today.
I am Lisa Iezzoni. I am at Harvard Medical School and the Beth Israel Deaconess Medical Center in Boston. I chair the subcommittee on populations for the National Committee on Vital and Health Statistics.
DR. AMARO: I am Hortensia Amaro. I am a professor at Boston University School of Public Health and a member of the Boston Public Health Commission, and a member of the committee.
DR. TAKEUCHI: I am David Takeuchi. I am a sociologist. Right now I am at the neuropsychiatric institute at UCLA. Soon I will be going to the department of sociology at Indiana University. I am the new kid on the block.
MS. GREENBERG: I am Marjorie Greenberg from the National Center for Health Statistics. I am the executive secretary to the national committee.
MR. HANDLER: I am Aaron Handler. I am a demographics statistics chief at the Indian Health Service, part of the U.S. Public Health Service.
The first five years of my federal service I worked for the racial statistics branch of the Census Bureau.
The second five years I worked for the National Center for Health Statistics, health manpower staffing. The last 23 years I have been in my current position.
MS. SABLAN: I am Magdalena Sablan. I am from the CNMI, from the Northern Mariana Islands. I work for the department of public health. I am the manager for the office of health planning and statistics. I am very glad to be here today.
MR. UELE: My name is Fale Uele. I am from American Samoa. I think I am HIS administrator sometimes. Sometimes I don't think I am, depending on who I am dealing with day by day. I am here to share with you some of the things that we have.
MR. ELYMORE: My name is Amato Elymore. I am from the Federated States of Micronesia. This is my first time to do this kind of group. I am the national health statistician in the Department of Health, Education and Social Affairs.
The last five years, I used to be working as a national health planner. My supervisor was Lynnette Araki. She is here. The following 10 years I have been dedicated to establish the health information system in the Federated States of Micronesia.
I am very happy to be here to share with you whatever you may want to know about the Federated States of Micronesia. I think I am the person who would probably know most or almost everything as far as health information from the hospital and everywhere. If they never see me, that is their own problem.
I have seen so many assessment reports and all that, but sometimes it is shocking, but I really enjoy them. I find them very interesting.
MR. NGWAL: My name is Nick Ngwal. I am from the Republic of Palau. I am the health information systems administrator for the Republic of Palau. Thank you.
MR. MILLER: I am Richard Miller. I am economic advisor in the Interior Department for Insular Affairs. I am really happy to see the representatives that we have from our territories. I haven't had a chance to talk to all of you but I really look forward to that.
We have all kinds of interesting relationships with the territories. I am the economist. I think probably I can't say this yet, but I have the impression that I may know less about health statistics than anyone else in this room. I am ready to learn.
MR. DAVIDSON: I am Bob Davidson. I am the deputy regional health administrator in Region II, the federal region that has responsibility for the insular territories and commonwealths.
DR. ISER: My name is Joe Iser. I am with the Office of Pacific Health and Human Services out of Region IX, Department of Health and Human Services. I work with the six U.S. Pacific Island jurisdictions and the state of Hawaii.
MS. FEASLEY: I am Jill Feasley. Until about six weeks ago I worked at the Institute of Medicine, and worked on the study on Pacific health.
I am now at home with two kids and I appreciate the opportunity to participate.
DR. KOO: I am Denise Koo. I am the director of the division of public health surveillance and informatics in the epidemiology program office at the CDC.
MS. FREEDMAN: I am Mary Anne Freedman. I am director of the division of vital statistics at NCHS.
DR. ZAMORA: I am Ruth Zamora. I am the assistant secretary for planning, evaluation, statistics and information systems at the Puerto Rico Department of Health.
MR. CAMACHO: My name is PeterJohn Camacho. I am with the Department of Public Health and Social Services, and I am the chief public health officer in Guam.
DR. MICHAEL: Good morning, all, Noreen Michael, director of health statistics, Virgin Islands, U.S. Virgin Islands..
DR. ROUSE: Beatrice Rouse, senior epidemiologist at Substance Abuse and Mental Health Services Administration.
MR. DAVID: David Brown. I am representing Ron Manderscheid, from the Center for Mental Health Services.
DR. HARDING: I am Richard Harding. I am a child psychiatrist, a member of the National Committee on Vital and Health Statistics. I am interested in pediatrics and psychiatry.
MS. WARD: I am Elizabeth Ward, the administrator of the Washington State Department of Health.
DR. MOR: I am Vince Mor. I am a professor at Brown University School of Medicine, and chairman of the Department of Community Health Care, and a member of the committee.
MS. RIMES: I am Carolyn Rimes. I am staff to the committee.
DR. IEZZONI: All right, we would like to go around the audience as well. Start with you.
[Introductions made off microphone.]
DR. IEZZONI: Jonathan, do you want to introduce yourself?
MR. SANTOS: Jonathan Santos. I work with the Ministry of Health and Environment in the Republic of the Marshall Islands. I am assistant to the Secretary of Health. I just took up the position like only last week. So, I am very new.
DR. IEZZONI: Okay. I know from the briefing materials that were provided to us that some of you have come from a very long way away. Again, I want to welcome people.
The diversity of people in the room, I hope that during some of the breaks and lunch people will have a chance to informally talk to each other, to learn.
Basically, the purpose of the meeting for the next two days is three fold. It is to identify health data needs of U.S. territories and freely associated independent countries, to brain storm about strategies to meet these identified health data needs, and then finally, to develop specific practical recommendations to implement these strategies.
We recognize that the U.S. entities represented around the table are diverse. Literally, they are spanning the two sides of the globe.
They range from sparsely populated, distant islands, to densely populated regions. The health data needs are also divergent, going from the chronic illnesses also prevalent in the 50 states, to problems associated with developing nations, such as high infant mortality, childhood malnutrition and infectious diseases.
Most worrisome, as in the 50 states, are substance abuse, accidents, and increasingly, youth suicide.
So, these are very important health issues that we can frontier, but there is something different and special about the perspectives that you bring.
That is the universal dominance of local culture, and the need to consider local culture as we think about something as sterile as health data needs.
As we learned from the briefing materials, cultural considerations should be central to designing strategies for data gathering.
We had a particularly pointed example about this from the Pacific region, in collecting information about substance abuse.
So, at the outset, we are here to listen to you over the next two days. Hopefully, together, we will try to come up with recommendations that will respect the diversity that is represented, but move forward all of us on generating the health data that is essential to making decisions about health care systems and setting health care priorities, especially in a time of scarce resources.
That is the purpose of the meeting. We have a number of presentations for this morning.
Let me just point out that, because we are on the internet, and because the comments that we make today will be transcribed as a public record, we do ask that as people speak, that they speak into the microphone, so that there can be the internet connection and the transcriptionist won't have trouble hearing us.
We have a series of presentations, as I just mentioned, and we are starting with Richard Miller. I heard a rumor that you have a power point presentation. Is your presentation the power point presentation?
MR. MILLER: No, it must be somebody else.
DR. IEZZONI: Okay, because we are about to inaugurate high tech in this room. For people who don't know it, this room has just been renovated. If it looks clean and nice, that is because it is brand new.
In the past, our technology hasn't necessarily worked great. Hopefully, this morning we will have the benefit of that renovation. So, Mr. Miller?
MR. MILLER: Perhaps the rumor came from my daughter's school. I actually did a mini course in power point. Next time I will do it.
It is a pleasure to be the first speaker on the tentative agenda. I look forward to getting on with the meat of the program and learning more about health statistics and needs of insular areas, from which I have a good deal to learn.
I mentioned I am the economist, the economic advisor in the Office of Insular Affairs in Interior. That office has a general responsibility for relationships between the Federal Government and the insular areas.
When I say insular areas, incidentally, I should probably always define them, especially in the beginning of the meeting, for our purposes, it does not include Puerto Rico, simply because we do not have responsibility for Puerto Rico.
It does include the U.S. insular areas, which are Guam, the Northern Marianas, American Samoa and the Virgin Islands.
Then, as far as technical assistance is concerned, and some other programs, we have responsibilities in the freely associated states, represented here today Palau, Federated States of Micronesia and the Marshall Islands.
It is perhaps good to start off with the things that we are not. We are not the administrator of territories, even though some old documents refer to us that way.
That is, we don't administer any of the governments in the territories. They are all self governing. They have governors and elected legislatures.
We are not the coordinator of federal programs, although there have been attempts to define us as such. With about seven professionals, it would be very difficult to coordinate the myriad of federal programs that apply to the territories.
We are not the guarantor of insular debts. I get a call every couple of days from some bond agency or someone who would like to know if we are the ones who pick up any defaults that might come along on a bond that they are looking into.
We are not, although we do our best, the information for insular affairs. Each of the territories and insular has, in one way or another, in Washington and other places, its own office that can handle general inquiries.
This leaves plenty for us to do, in spite of periodic attempts to abolish OIA. The Congress continues to load us up with new mandates.
For example, some of the ones that I work on are the annual state of the islands report, which we are about a year overdue at the moment, so don't ask me for the latest copy.
The annual report on the impact of the compact, we are required to do the annual report on the effect on U.S. insular areas of the compacts of free association with the freely associated states.
We have an annual report on CNMI, the Northern Marianas, initiative in labor and immigration. We have regular reports on the statistical recovery plan in American Samoa. There are a number of other mandates as well.
With regard to the compacts of free association, we are responsible for disbursing the money, essentially. We don't have very many strings attached. So, that is largely an administerial function, but it is a big one in terms of money.
Undoubtedly of most interest to this meeting is the technical assistance program which totals approximately $6 million divided among the four territories and three freely associated states.
I think each year actually the administration reduces it slightly and the Congress increases it slightly, so I am not sure where it will end up, but I think it will be close to $6 million for fiscal year 1999.
This is used for a variety of programs, covering government efficiency including computerization, training programs, economic development including tourism, some health programs as well, anti-drug programs, and one of the ones that I am involved with, statistics, in general.
Our statistical programs and technical assistance total around $700,000 to $800,000 a year, at least in the last two years.
This has been used primarily for a reimbursable agreement with the Census Bureau. That amount has been increasing as we have been trying to emphasize the actual technical assistance and training rather than data collection itself in the territories, although we continue to fund three or four surveys and similar activities a year in the territories.
The primary one recently has been household income and expenditure surveys, which are very useful for obtaining basic demographic data for updating the census and for establishing a market basket for consumer prices indices.
I guess in all types of technical assistance, there is a wide gulf between the need and our resources. The fact that our program has been very flexible is both a strength and a weakness.
It lets us respond to needs when they arise. At the same time, it means that we have to keep making sure that we are doing useful things and not just oiling the squeaky wheel. This sometimes means the politically squeaky wheel.
We no longer have quite as much flexibility as we had before, simply because of these Congressional mandates and programs that have become ensconced in our budget, such as drug programs and we have one to control the brown tree snake, which is urgent in Guam and Hawaii is worried about it.
We have a fairly large program with the Department of Agriculture for training administration in the territories.
Back to statistics, I have noticed that statistics is one of those topics that everybody wants. Everybody wants statistics and don't understand why they don't have the latest up-to-date, accurate statistics at any time in the territories.
Nobody wants to pay for them. We can't find very much interest either locally or even in other agencies, in going out and doing the dirty work of household surveys and tabulating the data in the territories.
The Census Bureau itself has limited responsibility in this area as it does the decennial census, and a few other surveys and censuses, such as the economic census, which is very five years.
In fact, that applies legally to all U.S. territories except American Samoa. We constantly find anomalies in the law. Some places are covered; other places aren't covered.
A problem there is that the Census Bureau nominally is responsible for making annual estimates of population, but discontinued that a few years ago in the territories.
So, people were flailing about looking for estimates. As I am sure most of you are more aware than I, many federal programs depend upon population estimates to determine the share.
Well, nobody could find an official estimate for the territories. So, they had to go back and look at the last census.
Don't ask me what it is, but now the Census Bureau does have official estimates. I am not sure of their accuracy, but they are official, and that is what is important.
In the United States, in the states, most of the raw statistics actually come from the states. Again, the territories don't generally have the capability and the capacity to collect statistics that you find in the states, and their cash strapped governments are often quick to cut the statistical budgets in a time of crisis which, financially, has been almost all the time recently.
One example is a quarterly labor force survey, which is a very basic economic survey in the states for determining the status of the work force and of the economy.
Guam has had, for some years, a quarterly labor force survey. Well, last year they discontinued it, because they had a budget crisis. Now they are saying they are going to start it up again.
In the Northern Marianas, our program financed the first, and half of the second, quarterly labor force survey, but local funds were not forthcoming with budget cuts. So, it became a semi-annual survey and perhaps an annual survey.
We ended up financing another round because we need the data. So, we hope that will get back on track.
The Virgin Islands does put out a pretty good labor force statistics, but they are not gathered, as I understand, as yet with a standard quarterly survey. We hope to help them to get one of those going.
It is apparent that we don't really have a major health data collection responsibility. What we do have is resources to provide training to improve data collection methods.
We, of course, do sponsor surveys which include health data, like the household income and expenditure survey as an example. The health statistics are often included in those surveys and in the results.
In the future, the best use for our limited technical assistance funds will be to continue to emphasize training of the insular area personnel to develop their own capability to collect and analyze these statistics. That is where our emphasis is really going to be.
To do that, it is important that we coordinate our efforts with others, both in the Federal Government and in the territorial governments, to make sure that the most important statistics are emphasized, that there is no overlap in data collection among different agencies, and that those statistics that are collected are made available to those who need them, because this has always been a problem.
This, I think, is our challenge for this meeting and it is something that we hope will be accomplished. Thanks very much.
DR. IEZZONI: Thank you, Mr. Miller. Before we move on to the representatives from the regions, are there any comments from representatives around the table, from the Pacific insular areas, from the Virgin Islands, to Mr. Miller's presentation?
The rules here are that we are not supposed to be shy, even though we are on the internet. Hopefully people will feel comfortable, if there is anything that you feel needs to be amended or a question that you have.
MR. NGWAL: I do have a question for Mr. Miller. Do you have much information on the Republic of Palau as far as data gathering and integrity of the data, things like that?
MR. MILLER: Not with me. In a way, perhaps that is a loaded question. The fact is that Palau, which is a very small non-U.S. insular area, and one for which we perhaps don't have as much direct responsibility has, in fact, really been a leader in statistical data collection, and has done a lot on their own, including the recent census of the population that was virtually entirely locally done.
All I can say is that I think Palau has done very well and I wish that we had more resources to devote to Palau, but it is doing fine on limited budgets, and on its budget, at least so far.
DR. HARDING: I am Richard Harding from the committee, saying that for the sake of those who aren't here.
You kind of start us off in a catch-22 situation, where you are saying that in order for money to be spent, there have to be good statistics, and that the good statistics aren't funded.
MR. MILLER: That sounds right.
DR. HARDING: Okay, then a part of what we want to do here today is figure out ways to make that essential for not only Congress, but because it is essential for the inhabitants of the islands.
I wondered if you had any thoughts, just starting out, as to who we might influence in that way, or the way to go about influencing that, or would you rather punt on that one and come back later on after we hear from some others. That would be fine with me.
MR. MILLER: I guess the proper answer is that is a good question if you can't answer it. The answer is yes, I would like to punt on that.
I have said what we have available, and we are very interested in the statistics and in cooperating on making sure that the data collection becomes better and is made better use of.
Of course, as anyone is going to say, we have very limited resources in this field. We do have some. I would rather wait and see what else comes out.
DR. AMARO: This is Hortensia Amaro from the committee. Since your work focuses primarily on training, are there specific training needs that you see currently existing?
We know that you do broad training in terms of data collection methods, you mentioned. Are there any more specific areas of training needs that you want to highlight to us?
MR. MILLER: First of all, let me partially punt on that, too. Our statistical training -- when I say ours, it is part of our technical assistance program.
It is actually done entirely by the Census Bureau. They are largely under the direction of Michael Levin, who is not here today, because he is out in the Pacific.
Rebecca Sauer, who just introduced herself and who also is new in the Census Bureau, works with Mike on some of these programs.
They have -- what we have done through Census is have one or sometimes two workshops a year. Sometimes they have been in Honolulu and more recently in Washington, in which things are taught such as IMPS -- I can never remember what it stands for, microprocessing systems for data collection -- and preparation of annual year books.
For example, there was one specifically in health data collection, which I am certainly not an expert in, but this is the kind of thing we can focus on, just as some examples.
DR. AMARO: Maybe also that is a good question for the rest of the folks around the table. You might be able to give us a sense of more specifically the training needs that you see in each of your home areas.
DR. IEZZONI: That will be something that we should really concentrate on. Let's move right now, though, to the presentations from the regional offices. Robert Davidson?
MR. DAVIDSON: Hi. I am Robert Davidson from Region II. Our region covers New York and New Jersey as states, and the U.S. Virgin Islands and Puerto Rico as a territory and a commonwealth.
We see our role in the regional office as a bridge between policy makers in Washington and the states and the territories and commonwealth.
We see ourselves as bringing the initiatives as central office and policies to the jurisdictions, and interpreting those, as well as bringing the needs of the territories and jurisdictions to the policy makers in central office. I think that our most important role is that.
We have been a user of data from the jurisdictions in the past when we have written programs and tried to point out the needs of the jurisdictions.
In the states, it has always been easy. The states have had their own statistical offices, and we have been able to rely quite a bit on CDC statistics and things that exist broadly across the nation.
In the Virgin Islands and Puerto Rico, we have had access to their statistics, which have been very helpful. We have found, though, that sometimes trying to mesh CDC statistics and the statistics coming from the jurisdictions doesn't always work, and it is hard to compare.
Most recently we formed a committee that dealt with child health insurance legislation last year. Our role was to bring this information on the legislation to the jurisdictions and help them begin to form programs, so they could accomplish outreach and offer a wider coverage to children with the health insurance being offered by the Federal Government.
As we did our committee's work, we developed a very nice desk reference of statistics available in all the four jurisdictions that we cover.
We had a wide variety of statistics we could rely upon for the states, and we had a much less available, when we dealt with our Caribbean neighbors.
I think we accomplished quite a bit and I think everything that is available is in this desk reference, but you can see where the gaps are in looking at that particular work.
Our role, as the bridge, basically is accomplished through the program offices of the Office of Public Health and Science.
We have responsibility for bringing the programs offered by the Office of Women's Health, the Office of Minority Health, the Office of Population Affairs, and the Office of Emergency Preparedness to the regions, to the jurisdictions.
With that, we were able to cross cut between those programs. Our relationships with the other HHS agencies is also valuable, in that we bring them in and cross cut, particularly with maternal and child health and community health centers. We are able to best work our programs together, in that sense.
We have helped sponsor conferences on teen pregnancy, teenage violence, HIV, women's issues, and things like that.
This is, at this point, our formal relationship with the territory. That is a quick nutshell of what we do.
DR. IEZZONI: That is a good overview. Why don't we ask Dr. Iser to give us his comments and then we will see if there are any questions.
DR. ISER: I am the one with the power point presentation.
DR. IEZZONI: Ah, we have been waiting; great.
DR. ISER: Thank you for inviting me here today. I bring greetings from my boss, who was actually your invitee, Dr. Ronald Banks, and his boss, who is the regional director, Grantland Johnson, the Secretary's representative in Region IX.
I am with the Office of Pacific Health and Human Services, as I mentioned earlier, and ask that the Pacific island jurisdictions please correct me on the issues that I may speak wrongly about here this morning.
You may do it privately, if you don't want to embarrass me, but if you want to, that is fine, too.
First of all, we are quite different from Region II, as I think most people know, but I think I will describe some of that in a little bit more specifics.
So, I will talk about the jurisdictions. I will talk a little bit about the infrastructure, and then a little bit about what we do.
First of all, this is a little bit difficult to read, because it is small for you, but if you overlay a map of the continental United States, up here is Hawaii, which is about where New England would be.
American Samoa is down here next to what is what is now called Samoa, which is down where Florida would be. If you go all the way out to Palau, that is all the way where San Francisco would be.
So, the geographic size of the Pacific Island jurisdictions, ranging from Hawaii, which we deal with, out to Palau, is quite huge.
There are vast distances that we have to deal with, as I told you earlier. There are time zone and date line differences.
American Samoa is on this side of the date line. Everywhere else is on the other side of the date line. The times range -- it is four hours difference this time of year to American Samoa, to about eight hours out to Palau, which is quite significant.
So, if I need to talk to Palau, I stay in the office late to do so.
As I mentioned before, there are almost exclusively minority populations in each one of the jurisdictions.
The exception may be the exception of the Commonwealth of the Northern Mariana Islands in which now immigrant population is greater and Guam, where I think that is true, too.
There is low per capita income, which ranges from about $2,000 per capita in FSM and the Marshall Islands, up to about $20,000 to $24,000 per year average income in Guam.
Small populations, about 17,000 in Palau up to, what is it in Guam, maybe 150,000 or so. Again, that is the largest, all together, about 250,000 people.
They are developing economies for the most part, with agriculture being the mainstay in some of them, although not most now. Tourism in Palau, Guam and CNMI is probably the major income generator.
The U.S. government assistance for some of the jurisdictions is the main economic factor in some of their jurisdictions.
High costs for transportation and telecommunications -- I will talk a little bit more about telecommunications in a minute.
First of all, we have been associated with the Pacific since 1898 when Guam was acquired following the Spanish American War.
In World War II, the Japanese occupied most of Micronesia; of course, not American Samoa. Then they were won back with hard battles during World War II. The Pacific Trust Territories of the United States was established in 1947.
During the 1970s and 1980s, then, most of the jurisdictions were allowed self determination. In 1978, the first one of those was created with the Commonwealth of the Northern Mariana Islands.
It is sort of a combination between a freely associated state and a territory, in that the commonwealth is allowed to control its own immigration and labor policies. Otherwise, the citizens are United States citizens, and under most United States laws.
In 1986, two of the jurisdictions became independent, the Federated States of Micronesia and the Republic of the Marshall Islands, and in 1994 the Republic of Palau was created.
So, we have two real territories -- Guam and American Samoa -- the Commonwealth of the Northern Mariana Islands, and the three freely associated states.
To be very clear, these are independent countries that have their own representatives to the United States as ambassadors and have their own representatives to the United Nations, also as ambassadors.
We have no control over their laws, except as our programs try to make them so.
Three of the jurisdictions -- the freely associated states - - have compacts of free association with the United States, which are agreements between the U.S. Government and these independent nations, for mutual benefit.
For example, the U.S. Government retains its rights to put military personnel and military bases if necessary in the freely associated states.
In return, the freely associated states are covered under our protective umbrella and are eligible for certain grants. In each one of the compacts, each one of the jurisdictions, the freely associated states, requested that U.S. Public Health Service programs be available to them.
So, we are a little bit of an anomaly for the Department of Health and Human Services. It may be argued that the PHS no longer exists, but we are now talking about the former agencies of the PHS, which are now called the public health operating divisions.
In general, you will hear from these people later -- CDC, HRSA, SAMHSA -- and then the staff divs that Bob talked about a little bit earlier.
So, there are two kinds of federal monies that go to the freely associated states. Mr. Miller talked about the United States transfers of annual payments for development and assistance -- economic development -- to the freely associated states, and grant programs which include, as I mentioned earlier, public health service programs.
Head Start is an anomaly out of the Administration for Children and Families, because it has separate Congressional legislation that allows that program to be based in the freely associated states.
Otherwise, none of the programs from HCFA -- Medicare and Medicaid -- none of the other programs from ACF and none of the programs from the Administration on Aging are eligible to be established in the freely associated states.
Health governments of the jurisdictions are different from what we are used to here in the United States, and I think are different from the two territories in the Caribbean as well.
There are health ministers or departments of health. Health ministries are in the freely associated states. Departments of health are in the territories.
In the CNMI, FSM, Republic of Palau and the Marshall Islands that includes public health, mental health and the hospital. In Guam, there is a separate hospital authority and mental health services governing body or department that has its own hospitals.
In American Samoa, the public health and hospital were recently joined, and now recently have divided again, because of a lot of interesting things going on in American Samoa, especially with the Health Care Financing Administration.
There are mental health and substance abuse programs in each one of the jurisdictions, and SAMHSA will talk about those when we get to those.
Again, there are hospitals in each one of the jurisdictions. Each one of the four states of the Federated States of Micronesia has its own hospital, and there are two hospitals in the Republic of the Marshall Islands, one on the main island of Majura and the other one on the main island of Ebeye, which is in Kwadjalein Atoll.
For culture, one of the things that is very interesting about the Pacific island jurisdictions is that cultures and languages are many and varied.
American Samoa is Polynesian by background, whereas the other jurisdictions are Micronesian, except for in Pohnpei state, where there are small pockets of Polynesians who, for some reason, ended up within that jurisdiction.
There are many local languages and ethnic groups, including the following: Carolinians are mostly in the Federated States of Micronesia, but there are also Carolinian populations in the Commonwealth of the Northern Mariana Islands, Samoan which are CNMI and in Guam, Palauan and Gilbertese.
Capingamerengay is -- please correct me -- part of that Polynesian culture that is now in Pohnpei state, but is part of the Federated States of Micronesia, Pohnpei state.
If we look at data -- this is where I will come back to a little bit later -- the data is not as accurate as we would like it to be.
If you look at infant mortality rates, however, ranging from American Samoa which shows about eight to nine in this graph -- it is a little bit old; it is probably more like 10 to 11 now, and you may help me correct that -- it ranges from about let's say 10 in American Samoa all the way up to approximately 62 in the Republic of the Marshall Islands. But we have some problems there, that I will get to in a minute.
The poverty level is very great out in the Pacific, ranging from about 30 percent in CNMI, a little bit less in Guam, all the way up to over 90 percent in the Federated States of Micronesia and the Republic of the Marshall Islands.
The total population is listed here on the light blue side, with the population under 18 next to it. You can see that there is a burgeoning population in all these jurisdictions, sometimes with half the populations being under the age of 18.
That portends future problems for the jurisdictions that will become greater as the years go by.
Hospitals can be described as being essentially at the community hospital level here at the United States. Most would not be accredited and, in fact, most are not that need to be, or should be.
There are also military hospitals in Guam and the Republic of the Marshall Islands that do assist the local populations, primarily in the Marshall Islands.
Kwadjalein, the hospital is in Kwadjalein Atoll. Ebeye is the island over. That is where a subcomponent of the Ministry of Health is located, and a lot of Marshallese from Ebeye do get taken care of in the military hospital there.
The outpatient permanent care accessibility is mixed. In some places there is very little. In other places -- for example, in Palau and Guam -- primary care accessibility is very, very good.
Each one of the jurisdictions is underserved. That means that it has too few health providers for the population they have, although that has been ameliorated in the past couple of years because of the medical officer training program that was established in Pohnpei State.
Now, if you were to do physician-to-population ratios in most of Micronesia, it would be greater and roughly equivalent to the United States, although a lot of these doctors have not finished their training yet.
There is a public sector, particularly on Guam and in the Commonwealth of Northern Mariana Islands, and the beginning of a private sector in Palau. I believe there are some in FSM now, and in the Marshall Islands, and of course in American Samoa.
Only one or two providers -- I think there is one physician in the Marshall Islands and one or two physicians in Palau -- I think two now -- that are in private practice.
In general, data is not as reliable as that in the States. I showed you a graph of infant mortality a little earlier.
If you look at infant mortality, it can range from 15 to 30 for the Federated States of Micronesia, 32 to 42 for the Republic of the Marshall Islands, depending on which data source you go to, even data sources from within the jurisdictions.
I don't mean to pick on those two jurisdictions, but it is one of the problems I came up with in trying to develop those graphs a little bit earlier.
Hanson's Disease rates in the Marshall Islands are actually being developed under a collaborative program with the World Health Organization and we hope with the Department of Interior very soon.
In FSM we now have a pretty good idea of Hanson's rates, but in other areas, we are not as sure as we would like to be.
TB rates are not clearly identified in most of the jurisdictions. The same is true for diabetes and other chronic health issues.
At the hospital level, the quality ranges from good to poor. There are electrical brown outs and failures throughout the jurisdictions, but in particular in places such as Chuuk.
Actually, Guam has had several. CNMI has had several. So, it is not limited to, if we want to describe them as the poorest of the jurisdictions, but also to the more wealthy of the jurisdictions.
At the dispensary level, or the outpatient level, particularly on outer islands, facilities are generally adequate to poor.
Up to date telecommunications systems are accessible on the main islands but not necessarily on the outer islands, where there may not even be electricity.
In that case, communication takes place through short wave radio or through a ship that may travel. For example, in Chuuk, I believe, the ship makes its rounds once every two weeks or once every month. That may be the only means of communication for some of the smaller islands.
Right now there is internet capability at all of the departments and at the hospitals as well, and they are becoming more available.
Telemedicine is now becoming more available, too. We had a collaborative project with PIHOA, the Pacific Islands Health Officers Association, which established internet communication throughout most of the jurisdictions.
Fale, maybe you can tell me, but it is particularly good in American Samoa right now, where I am getting burgeoning numbers of e mail addresses from American Samoa that are related to that project.
Video conferencing is not available except at great expense. ACF, the Administration for Children and Families, does a video conference every year with the Head Start teachers throughout all the jurisdictions.
They are just now doing that, and I taped a segment for it. That costs -- my memory is about $300,000 to $400,000 per session to put on.
It is very, very expensive, because you basically have to use pay satellites to do that. However, again in American Samoa, they were supported by a grant from MTIA out of the Department of Commerce.
There is now video conferencing available to American Samoa that we just experimented with last week, and which we think worked very well.
Audio conferencing is mixed, and we do that over PSAT as well, because of the costs.
Up until about a year ago, all the calls to the Pacific island jurisdictions were international calls, even to Guam and to CNMI. Now they are covered under the domestic act that allows domestic calls to Guam and to CNMI.
Everywhere else, including American Samoa, is an international call, very expensive. We do audio conferencing over PSAT, and many of the jurisdictions know about that, because I have talked to them that way.
I originally did a set of slides like this for the hemophilia program, and so I left this one in because I think it is interesting to note that blood banking is essentially non-existent except in Guam.
There are American Red Cross affiliates present. We had a grant writing workshop not but maybe two years ago. We brought up some people from American Red Cross to help out in some of the other jurisdictions.
Right now, it is pretty poor. When transfusions are needed, the community responses by donating blood. However, testing for viruses, including HBV, HCV and HIV, if done at all, are done after the fact.
Sometimes donors who are brought in are tested on an annual basis, but of course, viral status can change.
Stockpiling of blood and blood products is currently not feasible in most of the jurisdictions.
My office has been in existence for greater than 12 years now, and we have gone through a variety of iterations.
We used to have program authority, when the Public Health Service was an intact entity, and we ran the maternal and child health programs, most of the Bureau of Primary Health Care programs, community health centers and national health service corps, and family planning programs out in the Pacific.
Since the divergence of PHS authority, and under the direction of Dr. Jo Bufort, who was the former deputy assistant secretary for health, we developed into an office that does this:
We identify and provide program and policy advice on broad over-arching issues that concern all the operating divisions of HHS, the department as a whole, and other departments.
So, we work with Interior, we work with Energy, we work with Commerce, we work with State when necessary.
My work plan has now developed into a three year work plan because I can never get anything done in one year, and it depends on the generosity of the operating divisions to help support us.
One of the things we have been focusing on is continuing education for physicians, nurses and other health care providers.
We have had workshops on Hanson's disease and tuberculosis. We are now developing workshops on sexually transmitted diseases and HIV.
We have also had workshops on grant writing and grants management. We are doing audio conferences and we are now experimenting with PSAT to do what we call Pacific Public Health grand rounds, in which we are going to start establishing a program by which each one of the jurisdictions may give a grand rounds and we can provide continuing education credit for all the providers who will be listening.
We experimented once with -- the idea came from California, which has public health grand rounds. I taped that and tried to transmit over PSAT, which didn't work very well. So, we are still working on the technology.
We are now considering video conferences, and I have talked to the STD HIV prevention training center in San Francisco, specifically to work with American Samoa, which is so far away from the other jurisdictions, again, by air and also by time.
Now that they do have video conferencing, you might be able to work with them specifically on some video conferencing workshops.
We worked with the other staff divs, as Bob mentioned. We work with family planning; we work with women's health; we work with minority health and we work with emergency preparedness, to help fulfill their missions.
We have specifically been working with Betty Lee Hawks and others from OMH on the AAPI initiative. I am sure betty will talk a little bit about that.
The one thing to keep in mind, though, is that the thing that OMH has really focused on for the AAPI initiative is not just on Asian Americans, which most of the PHS and most of the government does focus on.
We have data on Asian Americans and we have not very good data -- this whole meeting is about that -- on Pacific Islanders.
So, Betty, I congratulate you and OMH and the committee representatives, on trying to work to get Pacific Islander representation, also, Stephenson Quarti, who is the Pacific Islander representative to that meeting, who is from the Republic of Palau.
We work with the impact of the compact with Guam, Hawaii and CNMI, and in particular with DHHS in looking at policies related to that.
We do coordinate a Pacific Health and Human Services working group, which has not met since Jo Bufort, Dr. Bufort, resigned some time ago. We are waiting for the new P-dash to come in so that we can constitute that.
I have mentioned telecommunications pretty extensively. We have a project working on surface equipment with the Department of Defense, State, non-governmental organizations and the jurisdictions to develop appropriate equipment needs and to match that with donations from both NGOs and DOD.
We have a pharmaceutical assessment that is done for all but three of the sub-entities. We weren't able to visit Ebeye, Kosrai or Yap. We hope to finish that up this year and to get that assessment out very soon.
As Jill might recall, I promised that some time ago. I just got draft responses back from the pharmacists that I sent the summary to. We should be able to get that out fairly soon.
We actually have some money for disaster mitigation projects for the Republic of Marshall Islands and for American Samoa and what used to be called Western Samoa, an independent country. It is now called Samoa.
The project would look at how we could develop some better mitigation plans in preparation for disasters.
I mentioned earlier that we have some responsibility for the state of Hawaii. We work particularly with Native Hawaiians in the state of Hawaii on health issues there.
We do have one employee stationed in Hawaii, who helps on particularly Native Hawaiian issues, but also on outer Pacific issues.
She had been stationed out in Pohnpei in CNMI some years ago, and so, brings good experience.
They have had special telehealth projects. We coordinate the Pacific Island Caucus conference calls. Betty has been on those. Those are with representatives from the Pacific Island jurisdictions, talking about issues that relate to them and to the U.S. Government.
We have been coordinating Western Pacific Health Net conference calls, which is an entity developed by the Pacific Basin Medical Association and a couple of other groups, to try to do continuing education, and look at those issues for providers.
We are beginning to coordinate Hanson's disease conference calls between all six jurisdictions and the state of Hawaii, because of the migration back and forth. Hopefully our first call will come up some time later this month or early in August. And we are beginning to do video conferencing.
Other special projects we have developed in Region IX, the Pacific Interagency Child Work Group. It involves HCFA, HRSA and Public Health Service and Head Start programs, how we are going to enhance child health programs in the Pacific jurisdictions and in Hawaii.
A blood safety enhancement working group so far includes FDA in Region IX, who you are not going to hear from, and hopefully HCFA.
There is an HIV/AIDS working group that will involve most of the operating divisions as well. We are working with DOD on zoonoses and some disease vector assessments.
We are enhancing our working relationship with WHO, the western Pacific regional office of WHO, in particular as some of the jurisdictions, some of the freely associated states, transition to be even more independent of U.S. Government assistance, which might happen over the next couple of years.
Bruce asked me to discuss a little bit about the SAMHSA collaboration. SAMHSA is putting together a program to provide better substance abuse and mental health training to mental health officers and others in the Pacific Island jurisdictions.
We are working with PIHOA, Office of Minority Health and SAMHSA to help make sure that the training is appropriate and works well for the Pacific island jurisdictions.
Other program issues, without good data you obviously cannot do health planning. Some of the problems that we see is that the health plans, where existent, are out of date and not very good.
We would like to work closer with HRSA on primary care issues. There are some significant issues with environmental health and sanitation in some of the jurisdictions that do not have sewage treatment plants, for example, or water supplies use cisterns, for example.
Laboratory training and laboratory assessment, actually, we have turned that over to CDC to help work on.
In summary, you need to know that the Pacific island jurisdictions are different, very significantly, one from the other, although there are similarities, historical and otherwise.
The infrastructure is still developing and much still needs to be done, and data is generally less reliable than what we see in the states. That is it for the high tech performance.
DR. IEZZONI: Dr. Iser, that was really informative. I notice that we are running a tiny bit behind schedule. I want to give everybody who has been generous enough to come today time to speak.
So, why don't we limit ourselves to brief questions for either Dr. Iser or Mr. Davidson before we start with the next panel. Are there any quick questions?
Dr. Iser, for those of us who don't know, could you just tell us in 30 seconds what Hanson's disease is? I notice that was mentioned prominently at several points.
DR. ISER: Hanson's disease is what was formerly known as leprosy. In most of the world it is still known as leprosy, but in the United States it has been known as Hanson's disease for many years.
DR. IEZZONI: Thank you. Any other quick questions? Great. Jill, you were going to tell us about the IOM report.
MS. FEASLEY: The Institute of Medicine is a non- governmental, non-profit organization. We are not a federal agency, but we are often asked by federal agencies to provide policy analysis and advice.
That is how we became involved in the U.S.-associated Pacific Basin. In 1996, HRSA asked us to do an assessment of the current status of the health care delivery system in the region, and then come up with a plan for future involvement with the region.
We were given additional support from the Department of Interior, as well as the Archstone Foundation, which is a private foundation that funds health projects in the region.
I directed the study, but was joined in my endeavor by a committee of 12 experts. The committee was chaired by Robert Lawrence from Johns Hopkins University, but also included members with expertise in public health, health services administration, education.
Three of the committee members actually live in the jurisdictions, and many others of the committee had spent many years working with health care in the region.
We developed a report, which I think by now most of you have probably looked over. The report can stand on its own.
I have been given 15 minutes, so I will try to hit some of the high points. I want to divide my remarks into two parts. First are the overview of how we came up with the report, which gets to some of the data issues. Then the second, and the majority of my remarks, will be about the recommendations that we came up with in our report.
I thought it would be good to go over the recommendations, since one of the questions that presenters were asked to discuss was, what did they think of our recommendations. So, at least I will give a shot at explaining some of the committee's thinking about why they came up with the recommendations that they did.
First, on how the report came about, and some of the issues that we dealt with, we held three meetings, including one in the region.
We made site visits to each of the jurisdictions and reviewed all readily available information and data.
As Dr. Iser mentioned, the regions are incredibly diverse, and it is not always accurate to make blanket statements.
Actually, I wanted to say that the population of the region is about 450,000 -- you had said 250,000. That is the official estimate.
DR. IEZZONI: That is an interesting example of data.
MS. FEASLEY: Actually, one of the blanket statements that I heard a lot when I was doing the research for this project and meeting with people was that the data is not very good in the region.
This is one of those blanket statements that is not really true, that the data is not very good because it is an oral culture, and people are just not used to writing things down.
As I say, I throw this out because I heard it over and over again, and I didn't know what to make of it.
Nevertheless, as Dr. Iser pointed out, all the jurisdictions have developed some type of health plan that makes use of the data that is available, and there are certain things that are very important to the health information infrastructure that are in place, such as the computer technology and the increasing video and audio conferencing and so forth.
The data is still generally less than reliable. Is that how you described it? Even such basic things as birth and death information, one of our committee member's friends -- Hezell(?) -- who is a Jesuit priest working in the area for 30 years or so, I spoke to him last night.
He has been going around to each of the states in the FSM doing some health planning and trying to base it on the data that is available.
He has found, by going through the death certificates, for example, and again, not to highlight Chuuk, but in Chuuk, roughly 55 to 60 percent of the deaths were not reported.
He estimated that by using the oral culture, and people's recollections.
It is also important to note that none of the data from these jurisdictions are currently included in the Healthy People objectives.
Out of the hundreds of objectives that are available for Healthy People, only eight actually even deal with Asian and Pacific Islanders at all.
Some federal programs, such as maternal and child health programs, have begun to ask the jurisdictions to report more sophisticated data than just the basic births and deaths type of statistics, and use Healthy People goals and objectives.
I would say that in our assessment, the quality and the utility of these reports, again, varies considerably.
Our report focused on the delivery system, not so much on the health status per se. Given the time and budget constraints of our project, we didn't spend a lot of time trying to track down information on health status.
To the extent that we did, we, too, found that it was not reliable or, if it was good in one jurisdiction, it could not be compared with another jurisdiction because of different nomenclatures and different collection periods and so forth.
Also, the validity -- some of the data, when we talked to people who helped gather the data, they sometimes said that it was an empty exercise, that they would make the reports on federal programs and fill out the data, but it was not necessarily linked to helping them figure out how to work their programs and to see how they could make changes.
Let me go to the recommendations that the committee came up with in their report. We had four major recommendations. I will go over each one and emphasize in particular the issues that deal with the data. I hope that your committee would consider these recommendations as you develop your own.
The first was to adopt and support more community-based primary care and preventive health services.
Dr. Iser mentioned that each of the jurisdictions does have a central hospital. The system of primary care -- actually he used to describe it as terrible. He has now upgraded it to poor. It is still not good in almost all the jurisdictions.
That does have implications for the health data and the data gathering activities. Things are generally pretty good at the main central points, but then, if you don't have the personnel in the dispensaries and in the primary care centers to feed up the information, you get what you get.
All of the jurisdictions have made at least the rhetorical commitment to primary care. Where the rubber hits the road, or in this case where the primary care provider ends up in the local dispensary varies a great deal from island to island.
We recommended that a regional health information system be developed. We felt that it was important for the region work together, so that it is standardized and each individual jurisdiction does not reinvent the wheel.
There is a lot of opportunity for the different islands to share their resources, and that has happened in other instances.
In our report we recommended that the Pacific Island Health Officers Association spearhead the effort of developing the regional health information system.
Our second recommendation dealt with improving coordination between the United States and the island jurisdictions, and also improve coordination within the United States and within the islands.
The most important recommendation that deals with the data issues would be to use block grants that require meaningful measures of accountability.
Certainly all the jurisdictions expressed an interest in having greater flexibility, but there was also a keen interest in also having accountability and making sure that what they were reporting was being looked at by the Federal Government, to sort of keep them honest, because there is a tendency to take the money and do with it what you will.
We did recommend the establishment of a regional based independent watch dog type of an organization, to provide technical assistance on issues like health data, but also to monitor the quality of the data that is reported.
I will probably get in trouble here but, again, while I was out in the region and working on this report, we heard again and again the analogy that you can give a man a fish and he will eat for one day, but you can teach him how to fish and he will live forever.
At this point, when it comes to asking for data from the region, it is almost a trained seal response, like, give me the fish, give me the money and I will tell you the answer. The answer is 25 percent infant mortality.
There is no link -- or not often a link -- between using the data and these babies are dying and looking at what we can do differently to change that.
The third recommendation that we made was to increase community involvement and investment. The recommendation in particular here, that deals with data, would be the suggestion that each jurisdiction develop a health improvement bench marking process.
That would draw heavily on health data that is available, the idea being to get the community involved by using the data that is available to highlight what are some of the most important health issues that the jurisdictions are dealing with, and then using that data as a bench mark and saying, here is how we are doing right now and here is what we want to improve as a community. Here is the level that we want to get to.
An example of this might be what is going on in Guam right now and in CNMI right now around some of the substance abuse issues.
The community is very concerned about this issue in particular. If they can rally around this issue, have good information about the effect that it is having on their communities and how it can change, it can help to set some of the motivation to make the improvements that is sometimes lacking.
The final recommendation that the committee came up with was to promote education and training of the health care work force.
I would specifically highlight, for your committee's consideration, our committee's recommendation that if there is special training that is done to improve health data collection and analysis, that the training be done as much as possible using the educational resources that are available on the islands.
Each of the jurisdictions has at least a community college. Guam has a university. There is considerable talent within the jurisdictions.
Again, it is supporting the notion that by training the people and using the resources locally, that expertise won't leave at the end of a workshop and head back on a place back to the United States. Really, the local communities can become more self sufficient and the efforts there more sustainable.
DR. IEZZONI: Thank you. That was an excellent summary. Dr. Iser, do you have a comment on that?
DR. ISER: Jill is absolutely right on the population. It is not a problem with the data. It is a problem with me trying to think and speak and add at the same time.
DR. IEZZONI: That is okay.
DR. ISER: It is not a problem with the data. It is a problem with Jill. [Laughter.]
DR. IEZZONI: So, the population is 450,000, plus, minus. Okay. What I would like to do is maybe move on to the next panel, which is the panel on federal programmatic and data activities. Is there a comment?
MR. HANDLER: When I heard this last presentation it really it me hard that what is going on in the outlying area is basically what my agency faced when it was formed in 1955.
We had health status problems and very little data. Basically we used data on the health status of the American Indian population to leverage money from Congress and then, over time, health status improvements were evidenced by the health data results.
We lay water and sewer lines on Indian reservations and the engineers were able to use statistics on gastroenteric deaths and infant mortality to show that when water was put in the home and clean water was available for a community, that gastroenteric deaths and infant mortality went down.
My agency provides scholarships to train people in the health professions and loan repayment programs. That is how we attract students to work on Indian reservations, because there is a loan repayment program if they train.
Basically, I would recommend -- it would take some time, but the people who are in the outlying areas contact people in my agency, because we had laid the groundwork for what you are facing today.
DR. IEZZONI: Mr. Handler, I think, will have some excellent suggestions and insights from his experience tomorrow as we talk about ways to improve things.
I would like to move on to the federal panel and maybe have two of the presenters talk, and then take a break.
I would like to acknowledge that we have an important guest with us. Donna Christian Green, please introduce yourself.
DR. IEZZONI: Oh, that is great. Hopefully you will be able to participate for a little bit of time, and we thank you for taking your valuable time.
Maybe we could have Dr. Koo and Ms. Freedman talk and take a break and have Mr. Millman talk after the break.
DR. KOO: I am going to talk mostly about public health surveillance, because that is the thing that we think of the most at CDC when we think about health data activities.
I think that is particularly because CDC considers itself certainly a leader in this particular area of health statistics.
The definition of public health surveillance, just in case people don't know it, is the ongoing systematic collection, analysis and interpretation and dissemination of health-related data.
It needs to be disseminated to those who can take some public health action. I use the term health-related data to refer not just to outcomes, disease, death, but also to behavior, to environment, to risk factors, to agents.
We are very much broadening the definition of surveillance, and it pretty much started with infectious disease surveillance.
We consider surveillance to be a cornerstone of public health practice, to identify problems, to assess the impact of our programs, and to plan.
I think a couple of people have raised the issue of having data, that it doesn't help if you just have data. Really, we think of surveillance as information for action.
The MMWR, we publish actually data from our division every single week in the MMWR. Actually, a couple of weeks ago, the July 3 MMWR, every single article actually happened to be on some form of surveillance.
There are arboviral infections of the CNS, which is both disease and vectors, looking at sentinel chickens and sentinel mosquitoes and so on.
There is something about monitoring environmental disease, something about malaria transmission -- actually, it was in Armenia -- and then a behavioral risk factor surveillance system summary looking at age and state-specific prevalence estimates of insured and uninsured persons. That is through surveillance surveys.
The assumption is -- obviously, people here probably know this -- but the assumption is that we have this data and it is automatically available.
Actually, the usual set up for surveillance is that it is a distinct data collection activity, which is difficult.
Obviously, we are very interested in the activities of NCVHS because we think and we hope that in the future there will be more direct access to data as it is collected, perhaps in a medical setting or in a health care setting.
What we have done over the years is, we have had to set up separate data collection systems. Usually there are systems of notifiable diseases, there are registries, there are these ongoing surveys.
There are vital statistics, that Mary Ann will talk about. We try to capture administrative data systems. But the idea is that it is ongoing.
What we would like, by and large, is to cover the entire population. But there is a balance. These are not studies. They are not research. They are actually just a monitoring function.
You have to balance how much information you ask for and what you can get on an ongoing basis.
Because public health is not mentioned in the Constitution, in surveillance we don't have any sort of a mandate, and that is sort of implied in one of the questions here.
So, surveillance is built on partnerships. It is a voluntary relationship with the states through the Council of State and Territorial Epidemiologists.
In this area they actually have other organizations that they try to work with. I think it makes it a challenge for them, because they have a hard time getting to, and working with, the Council of State and Territorial Epidemiologists, which has meetings in the United States each year to discuss what should be conditions under surveillance.
They also have, more locally, PIHOA, WHO, the RIPRO office, the South Pacific Commission, and other people who might provide funding for doing some of these activities.
While surveillance should be useful for identifying cost cutting priorities, it is quite difficult, because of the nature of funding public health, that it is categorical.
What has happened is, we have had money in the past -- and we still have money obviously -- for tuberculosis or for sexually transmitted diseases or for AIDS, and it goes on and on.
In order to try to provide a service, to help collect that information in the past, we have helped build systems.
These are independent systems for AIDS, for tuberculosis, for STDs, et cetera. It makes it very difficult to do this cross cutting priority setting, I think, for the jurisdictions and also for the agency as a whole.
The only other point I wanted to make in this sort of overview, is that it is difficult to distinguish the budgets specifically for data collection activities.
The agency will fund prevention activities for TB or prevention activities for vaccine-preventible diseases, and data collection, as everyone has acknowledged, is just a part of that.
So, sometimes it is harder to separate those things out. So, the kinds of data collection that the CDC generally supports are, to a large degree, surveillance.
I will start briefly with notifiable diseases, which is actually an area for which there is very little funding.
Notifiable diseases is an area of infrastructure. So, it doesn't get categorical funding. I can speak to this because it is in my division.
We can provide software and technical support to these areas, but it is very, very difficult, because of the time zone difference, because traveling them here or traveling there is very, very challenging.
Providing telephone support for software, et cetera, is also very challenging. So, what we tend to get from these areas, again purely on a voluntary basis, just like the states, are summary numbers that are often different.
I think the comparability issue is something to talk about. Partially, though, I don't know if quality is different. I think data are different.
Obviously, laboratory access is different. The case definitions developed for infectious diseases in this country, in this area, in the continental United States, we have resources that are different.
We tried to get our folks in the United States to develop case definitions that might include more syndromes and less specific, not just laboratory confirmed, cases, and it is very difficult for people to want to focus on that.
So, the cases are going to be different by definition. A hepatitis B case here is probably different in terms of being able to confirm it.
So, we have not had data from some of the areas for the last couple of years, probably because when we tried to communicate with them, resources on their part, in terms of people, turn over, knowledge.
We have sent software to a couple of areas, but without the ability to have training, it is very, very difficult.
The specific categorical areas, on the other hand, have provided funds and software, and have actually traveled out there and conducted regional training for their specific software programs, for example TB.
I don't believe that they used the STD software systems, and HIV. Again, it is very difficult to do that on an ongoing basis.
I think there is turnover in staffing and these systems are all different. So, it requires different training for all of these.
Somebody pointed out, when she had gone over there to do some training in TB, that it was challenging for the folks in the Pacific areas because they couldn't have access to supplies. She had to ship in all the diskettes and the supplies, so that made it fairly difficult.
The general area of surveillance, and where we do tend to provide funding and direct support in terms of software or bodies tend to be areas where have the most money.
So, that would be immunization, TB, HIV, STD. Then in the area of immunization, we are also supporting immunization registries in the area.
Some of them would like to use them to measure immunization levels of targeted age groups, coverage levels for clinics and geographic areas, et cetera.
Again, it is part of the technical issue, that they need more training to do the analytic work.
Beyond, though, infectious diseases there are also some programs for cancer registries, particularly in Puerto Rico, Virgin Islands and Palau.
They have one competitive cooperative agreement to either establish or enhance their population-based cancer registries, and as was mentioned earlier, their diabetes control programs, and there are plans to establish a regional training center in the Pacific Basin. We have provided block grants in the past.
One other specific area that HIV has done is certain sentinel studies to estimate HIV sero-prevalence among people entering drug treatment programs and STD clinics. Specifically, that one is in Puerto Rico.
The types of things that we provide basically are training, often in Atlanta, where we fly people in, or we try to get out to the Pacific Basin or Puerto Rico and the Virgin Islands; equipment, vaccines, that is less a data issue, and software.
We try to do a lot of consultation, either by phone or sometimes on sight. When there isn't as much of the infrastructure, we often end up doing it, as well as epidemic investigation, aid. We will travel there and do investigations of dengue, cholera, the vaccine- preventible diseases.
In terms of flexibility, unfortunately, as I have described, as you see, the software is going to be very specific to a specific program, although if they buy hardware, they can obviously use the computer for other functions, as long as there is enough space on the hard drive.
One thing that CDC has initiated and is now partnered with HRSA is something we call investment analysis, where we are allowing flexibility in spending categorical funds.
If you do an investment analysis, you can take portions of all your categorical funds and direct those toward infrastructure.
Then another activity that the CDC initiated was actually, because of the issue of training, because I think it really helps to be there, because it is so far away, the national immunization program of CDC actually funded a regional epidemiologist.
That started last year, and he is based in Pohnpei. In addition, each of the jurisdictions was asked to redirect some, or put into a direct assistance fund, a small amount of their portion of federal funding for a public health advisor, who is also now stationed out there.
Both of them will be at CDC in the next couple of weeks for a national immunization conference. I think they are focusing more on immunization issues at this point in time.
The idea is that they should focus on regional disease surveillance and hopefully work with the South Pacific Commission.
That is another thing that I have learned about in the last few years, is that there is the South Pacific Commission in that area, which is distinct from WHO.
They have actually taken the lead on disease surveillance in that region, because of course they are very close by.
They have set up a list serve that they call PacNet, to try to at least have informal sharing of information, warning about disease.
There are a couple of epidemiologists based in New Caledonia who are trying to sort of monitor the list serve, and work with the quality of the data, and also to standardize information for that area.
Out in the Pacific they have data collection forms not just from the United States, but from the South Pacific Commission, WHO, et cetera, anybody that they obtain funding from.
DR. IEZZONI: That is excellent. There are lots of issues that we need to come back to. I don't mean to rush people. Hopefully we will have a chance for discussion later and maybe tomorrow.
Let's move to Ms. Freedman, and then we will take a break.
MS. FREEDMAN: I was asked to talk a little bit about NCHS' programs in the territories and the insular areas. I am going to concentrate on the vital statistics system because that is really where virtually all of our efforts in this area are.
I know that you are all familiar with vital statistics, but let me just remind you of a couple of things about it.
The main point is that, in the United States the legal authority for registering births and deaths rests with the states and the territories. There is no federal mandate to register these events.
However, there is a federal mandate to collect data from each of the states and to produce national statistics. That is what we do at NCHS.
We, at this point in time, have data from the 50 states, the District of Columbia, New York City, which happens to be a separate jurisdiction for historical reasons.
In the territories, Puerto Rico and the Virgin Islands have been part of this system almost since its inception.
The Virgin Islands joined the national vital statistics system in 1919 and Puerto Rico in 1931. Guam began contributing data to the system back in 1970.
During the past year, we have begun to talk to representatives of American Samoa and the Commonwealth of the Northern Marianas, about obtaining data from them, to include in the national vital statistics system.
We have actually received the first batch of data from American Samoa and are taking the opportunity at this meeting to talk more with the Northern Marianas.
We hope to be able to publish data from these areas beginning with the 1997 data year.
As Denise indicated about surveillance, because of the way the statutes are set up, vital statistics has always been a cooperative venture between the Federal Government and the states and the territories.
Until the 1970s, the way the system operated is that NCHS obtained copies of records from the states and territories, and then processed them in house.
Beginning in the early 1970s, we began to obtain data from states in an electronic format. We launched a program called the vital statistics cooperative program, through which we developed specifications for vital statistics.
We promulgated standards for data elements, for coding, for transmission schedules, et cetera, and we contractually paid states to support part of the system.
We don't support the entire vital statistics program, but we do support part of the cost of registering events and producing vital statistics.
To ensure equity among the estates we worked with the National Association -- there is an organization that is now called the National Association of Public Health Statistics and Information Systems, which represents the state registrars and the territorial registrars.
We developed a cost formula for distributing available funds. We renegotiate that periodically with the states.
Currently, all the states, D.C., Puerto Rico, the Virgin Islands and New York City, are participating in the VSCP for at least some components of the vital statistics system.
Not every area provides us with all data components in electronic format. There are some states that are still sending us certificates for some things where we do the data entry.
For Guam, we still obtain copies of records and code the data in house. We would propose that initially, at least when we start with American Samoa and the Northern Marianas, that we would do the same.
I think it is important to understand that since the VSCP supports part of the cost of operating the state system, and because they are providing us with electronic data and meeting specifications, the reimbursement level for the VSCP is considerably greater than what we can afford to pay for the purchase of records.
The 1998 contract amount for Puerto Rico was approximately $88,000 and for the Virgin Islands is approximately $61,000. In contrast to that, we are reimbursing Guam $1,000 a year for copies of its records. We recognize that this is not a lot of money.
We would really be receptive to discussing the possibility of bringing these three areas into the VSCP, but this is a budgetary issue, in addition to perhaps a challenging issue related to the technology in the areas.
You asked some questions about flexibility. Again, since this is a system governed by state and territorial law, the states have a lot of flexibility in the area of what they collect.
We develop and promulgate, in cooperation with the states, what we call the standard certificates of birth and death.
These are recommended as guides to the states, and actually as requirements for the contracts. However, in addition to the items that are on the standards, many states and territories may include other items to meet local needs.
Under the VSCP, we identify the data items that we want and the reimbursement is based, in part, on the states or the territory's ability to provide those items. So, there is flexibility, but it is flexibility within certain constraints.
The only other issue I really wanted to mention was the area of training, which has come up several times today.
NCHS has a variety of courses in statistical methods and epidemiology that we offer to state and territorial personnel through a program called the Applied Statistics Training Institute.
In addition to that, the Division of Vital Statistics offers a couple of courses that are specific to vital registration and vital statistics, and we also have a training program for state medical coders and nosologists, in coding cause of death.
All of these courses are free. However, we can't afford to pay travel and expenses. So, the challenge is to find ways to get people from outlying regions in to them.
We try to conduct them regionally, but generally that is regional around the continental United States. States such as Alaska and Hawaii have problems, and I am sure the territories as well.
We have had a number of territorial staff who have attended these courses in the past. I know there is interest there. Unfortunately, the reimbursement is an issue that we probably ought to discuss.
We also have staff with expertise in statistics and data processing and vital registration methods. We do make every effort to respond to requests for assistance.
Most of the time, we do that by phone, e mail, et cetera. We occasionally are able to make some site visits to provide some TA. Again, it is a function of our travel budget and available funds and staffing.
I think that is about what I have to say on vital statistics.
DR. IEZZONI: That was remarkably informative as well. What I would like to do is, are there any really quick questions for Dr. Koo or Ms. Freedman?
DR. TAKEUCHI: Dr. Koo, I think you mentioned a grade point. That is an issue of case definition, that there may be differences among cases in how cases are defined.
Isn't there good information, either ethnographic or otherwise, on case definitions in these areas, and whether that can be applied to look at different rates of diseases across areas?
DR. KOO: So, your question is whether there is information about how they are defining cases in that area?
DR. TAKEUCHI: Right.
DR. KOO: I would actually say that perhaps some of our colleagues in the territories could give you a better idea of that kind of information.
When we work with -- I have been to several of these meetings in other parts of the world. The issue ends up being, at least in my experience, because we are usually dealing across lots of areas and not getting into the specifics of the ethnographic areas, is how much information there is in terms of specificity.
How certain can you be about the case because of, at least in our traditional medical model, the amount of information available.
So, it tends to be less laboratory or other supporting, so it is sort of confirmatory information. So, yes, there is going to be the issue of how to define it when you are dealing with less specific terminology for that particular area, for that particular country, so it has some meaning across areas.
It is very, very challenging for the World Health Organization, and I would imagine that it translates to these areas. It is challenging for this country, frankly.
DR. IEZZONI: Hortensia?
DR. AMARO: I had a question for Ms. Freedman. Could you tell us a little bit more? You mentioned the cost formula. I am wondering, is the cost formula for the vital statistics, is it applied in the same way to the islands and territories or is there a different formula?
MS. FREEDMAN: No, it is applied in the same way to all participants. It basically is based on record volume, area and salary level.
The real difference is the fact that the non-participating states and territories and components of the program, we just don't have a budget to pay for the records at a very high rate.
We pay states four cents a record for copies of records. We are paying more than that in the territories, obviously.
DR. IEZZONI: That is helpful information. Yes, Dr. Iser?
DR. ISER: I just wanted to mention something real briefly to your question. If you look at something as basic as TB, the way the United States requests that diagnoses be made is far different from what WHO or RPRO recommends.
For example, as you mentioned, WHO and RPRO do not recommend X-ray confirmation, whereas we do. That becomes an issue on data collection and also becomes an issue, then, at the local level of how do you diagnose and treat someone who may or may not have tuberculosis, depending on which kinds of diagnostic, laboratory and X-ray facilities you have and can use.
DR. IEZZONI: Why don't we take a 15-minute break, which would bring us back about 25 past, and we will reconvene with the federal panel.
[Brief recess.]
DR. IEZZONI: Hello, folks. I would like to reconvene. I would like to reconvene. We are finding folks to share ideas with. It sounds like there are a lot of connections that will hopefully be made over the next two days that will be very productive.
What I would like to do is try to get in the final panel of five folks, I guess, before the lunch break. So, the lunch break will probably be moved back a little bit. We will still take an hour for lunch so people can kind of decompress a little bit.
So, let's see, who is first up? Michael Millman was kind of the hold over from the last session.
DR. MILLMAN: I guess I should be thankful that people have had a chance to recoup a bit. I am going to shift the focus from surveillance and vital records and perhaps survey data to administrative data.
The nature of the HRSA funding program is that we fund grantees out there. They may be states; they may be community-based organizations; they may be institutions.
One feature of that is usually we are only a part of their funding. They merge funds together to sort of build infrastructure to deliver services.
That has implications for what you can ask for in the way of data. Let me try to run through our major program areas, and then I will talk about the sort of data that each collects, and then some issues.
We have the Bureau of Primary Health Care, which runs the community health center program, migrant, homeless centers, the National Health Service Corps.
We have 20 grantees in Puerto Rico, two in the Virgin Islands and four in the Pacific Islands.
We run the maternal and child health block grant. That is essentially a formula grant that goes to states and, in this case, to territories.
We have the Bureau of Health Professions, which mainly grants to teaching institutions and loans and scholarship. The focus of that in recent times has mostly been in the area of family practice, nurse practitioners, physician assistants, and a big emphasis on primary care.
Then we have the HIV bureau, which has several titles of the Ryan White grants. Two key ones are Title I goes to metropolitan areas, areas that have high prevalence of HIV. Title II goes to the states for planning and services.
I think probably the two most significant programs are the primary health program, the Bureau of Primary Health Care, and the Maternal Child Health block. I will talk about the data systems for them most. There is a little bit of HIV activity and in the past there has been, I believe, a medical officers training program through the Bureau of Health Professions.
The fundamental thing to know about data collection is that we don't have any individual person level data that is collected and stored by HRSA.
Basically, we have aggregate reporting from the grantees. They range considerably in how they do it. We have very little specification about how they do it.
Across the country we have some very sophisticated centers that have fairly advanced management information systems, that collect clinical data and are far along, and perhaps some of them are even further along than some of the large managed care organizations.
We have those that are still doing things basically off of billing and appointment systems and some probably even still doing it by hand. So, it ranges considerably.
We do sort of have kind of a floor on how well this data is reported, and they are audited from time to time.
I guess I should begin with taking credit for the fact that we funded the IOM study. Having been a study director at the IOM for many years, I understand how important that is.
There have been, from time to time, small evaluations, but I think it is important to think about administrative data because, as I think the National Committee on Health Statistics is focusing on the standardized data for electronic transactions, the future really is in being able to use that data and start thinking of that data in terms of performance measurement.
That is how we have been thinking about the administrative data that we collect, is how do we turn that data into something that tells us about performance and the needs of the health centers.
The fundamental problem with that is you are only collecting data about who comes in the door. So, you have to do some other things. You have to link up with other kinds of data in order to figure out what proportion of the population you are serving and what proportion of the total needs. That is the big trick in that game.
Let me tell you a little bit about the data system, and in fact, most of the administrative data systems have been revised and improved in the last few years. We think that the consistency and the quality of data will improve as well.
The big system for the Bureau of Primary Health Care is called the Uniform Data System. People more commonly knew it as the BCRR, the Bureau of Common Reporting Requirements. That has been replaced by this Uniform Data System.
We collect financial data about the centers, their revenues and expenses, personnel information, staffing information, the volume of services, the number of users and the definition of user as someone who has used the center at least once in the last year.
We have user characteristics including income and race, and we have numbers of counters. As an effort to move more into performance and needs assessment, we have been developing more and more clinical indicators and have requested data by primary and secondary diagnosis in areas like infectious disease, parasites, medical conditions like asthma, hypertension, cancer, childhood diseases, mental health and substance abuse, and collect information about diagnostic tests and preventive services.
Of course, the problem with the concept of user that we have is that, at least in the fee-for-service world, people can be using other resources as well.
As we move more to managed care, Medicaid managed care, some of that problem is dealt with, but not totally.
Another part of this subcommittee is looking at that issue of quality and utility of Medicaid data.
The maternal and child block grant, Title V of the Social Security Act, is essentially a formula-type grant to the states.
The effort there has been to try to move more and more toward performance measures. We have had a big effort over the last two years to work collaboratively with the states to develop a set of core national measures, and then some other measures that the states can choose from, to reflect their own programmatic interests and activities.
The block grant requirements are relatively loose. A third of that money has to go to children with special health care needs, disabled children.
Then, states use their money in a variety of ways. Some of it is directly purchasing services; some of it is population-based services; some of it is enabling services.
A lot of the personnel health services are contracted out and distributed in different ways to local areas. Local areas distribute it and make contracts with local providers.
It is very difficult to track exactly how the money is used.
DR. IEZZONI: Mr. Millman, I wonder if you could focus maybe on programs that are in the regions.
DR. MILLMAN: As I said, we have those community health centers. Those communities are filling out the uniform data system. So, that data exists there.
An evaluation study that was done a few years ago looked at that data and said it was some of the best data in those communities.
What I am saying basically applies to these. I think the key thing to remember when you are talking about a program, essentially the kinds of programs that we have that fund grantees, you are dependent on information provided by those grantees, and the extent that you can link that up with others.
So, to the extent that services are being provided in those communities through our grantees, we have the data on those things.
The block grant as well, we have, as I said, we have been working with the states to develop the performance measures and are now providing technical assistance to all the areas, including the Pacific Islands and Puerto Rico and the Virgin Islands about how best to go after the performance measures.
Some of them require the linking of the administrative data collected through the programs of the block grant. Some of them require linking to other data sets that are available, vital records, immunization registries, basically laying the ground work.
Basically, it works in the jurisdictions the way that it works in the rest of the country. It is essentially information from grantees, who collect the data as a byproduct from delivering service.
Then, as we move toward performance measuring, we will be trying to link that to other data sets to understand the proportion of the problems at work in the populations that we are dealing with. I will stop right there.
DR. IEZZONI: Are there any comments from some of the grantees? Great. All right, Dr. Rouse, representing SAMHSA.
DR. ROUSE: I am Beatrice Rouse from SAMHSA and I would like to show you what we have been talking about. We have talked about several things.
I have here a book about what we have collected on substance abuse and mental health. It is kind of a commercial.
If any of you on the mainland or on the islands have data, we certainly want to distribute it.
We talk about how to improve the quality of others. I find that sharing it with others, exposing it to the light of day, letting people who give you the data and who use the data use it and, oh, dear, sometimes give you criticism, but it helps. So, I would like to share some data with you.
I would like to talk about four things. One, data needs. Why do we want data on substance abuse and mental health and why do we hope that the areas that we are interested in -- the Pacific insular areas, Puerto Rico and the Virgin Islands -- use it?
What are some of the funding opportunities at SAMHSA? There are six to eight funding opportunities for getting and using data.
What are the associated challenges? Here is where I would like you to be thinking about ways that we can help. We have identified some issues that relate to these areas that make it difficult for them to be funded, and maybe you can help with some policy changes in those areas.
Finally, SAMHSA program activities and the process that we go through, and our philosophy.
SAMHSA is a young and small agency. But we are wiry and we are quick. We have been doing a lot of work.
I have identified 13 different people in my agency who have been involved in this area. I would like to introduce three of my colleagues.
David Brown you know, mental health. Bruce Grant is the coordinator for Pacific Basin activities. Our colleague from Johns Hopkins, Amelia Arrya, I would like her to raise her hand so you know who she is.
I would like you to discuss data, actual numbers and statistics here. I would like, if you have time and interest during lunch time or the breaks, talk to these people about what is going on with our data, because I know we have limited time.
I would like to say, when we talk about data, we usually focus on problems. What are the diseases, the injuries, the terrible things that are happening.
I would like to say that we need data to focus on our strengths, too. What are the good things that are happening in these areas in terms of health.
What are the good things that they are doing to cut down on substance abuse and improve the mental health? We need those kinds of data, too.
We need data to monitor the process, the disease process, the AIDS, seroconversion or whatever. We also need data on the service delivery process, who has access, what happens to the people, sharing best practices. So, that is a second data need.
We also need to document our accomplishments. People can do well, and they can use data to show where they did well in their programs, as well as identify weaknesses.
I would like to focus on our strengths, too, because sometimes people don't give us data because they are afraid.
They are afraid that you will use that data against them. They are afraid that you will cut back on their funding. They are afraid that they will lose their job.
So, they give you what they think you want. One way to improve the data quality is to give them something they need, they use, and everybody can share.
Finally, we can use data to uncover future need. What have we done? Where can we move on to the next steps? Where do we need to go? What are the high risk groups? What are the effective processes? What are the areas of the country that we need to identify.
The six to eight funding opportunities at SAMHSA that I mentioned, two of them are the block grants. You can apply for both the mental health and the substance abuse block grant appropriations.
The monies are identified by formula, but in that application there are certain performance measures that are needed.
As we go into the evaluation of government and the monitoring of the distribution of funds, it is increasingly important that we get good data about how those funds are used.
The second one or the third one is in our Center for Mental Health Services. There are actually a couple.
One is something we call the PATH grants. That is the program to reduce homelessness. We do have problems with homelessness in these areas. We are talking about how small they are, how disbursed they are. We still have problems with people not having a place to call their own.
I understand -- and maybe people can give us more insight into it -- that people are ashamed of being homeless, and I hear they are put in chicken coops and they are put in family places out of sight, out of mind. They are still homeless, and there is money at SAMHSA to deal with those programs.
We also have something called AMI, the program to deal with the advocacy for the mentally ill. People have to apply for that. It is not just given out, and they have to document their performance, the giving of services and the receipt, and what happens to them. So, again, another performance measure that is needed.
Finally, both the substance abuse prevention and treatment centers have needs assessment monies that are available.
So, there are several things that are kind of generic. In addition, there are two, one called our targeted cities program where there are places where there are high substance abuse areas that people may want to study more and they can apply for those grants. Then recently, the high intensity drug grant.
So, these opportunities are out there, but there are problems associated with them. Many of these grant announcements are written for people on the mainland. They have computers. They have research persons that have experience, people who have applied for grants. And there is a technique for applying for grants.
There are certain requirements that you need to have that rural areas in the United States can't meet. So, we know that it is not just the islands, but rural areas in the United States that have these problems.
There are problems that I think it was mentioned in passing about the weather in the areas we are talking about.
We understand a storm can come through and wipe out a whole health department. Sometimes the data systems o with it. Even if you develop a good data system, you need to have that.
There is the problem of the continuity of people working on the data in the islands, that corporate memory, the feeling that, well, I am not going to be here very long so it doesn't matter how good the data are. So, there are some challenges.
Finally, I would like to talk about our program activities. You do have a handout. I am at the paper and pencil stage. I think everyone got a copy of that.
I want to thank Dr. Noreen Michael. She made available to us the data on the Virgin Islands, which is on the last page.
Again, we can use these. We talk about data and the last three pages are pages from the updated version of the source book.
We have for comparison suicide, homicide and all causes of death, courtesy of the National Center for Health Statistics, so you can see what the rates are in the United States.
You can compare the suicide and alcohol-related deaths in Micronesia and the Marshall Islands. Then finally, the data on mortality from the Virgin Islands, with the caveat that the studies were not done there that showed any relationship to alcohol.
So, we can't quantify it. We can say, this is a place we can start looking.
In the beginning of the handout, courtesy of David Brown, we have some funding information for those who are interested in the specific areas.
These are part of the mental health statistics improvement program at CMHS that SAMHSA has developed. They went through a very thoughtful process.
In the beginning the money was going to developing a data infrastructure. Then it went into data collection. Now, hallelujah, it is into data analysis and distribution and utilization. So, it is the process that each person and each system has to go through.
The next one has to do with the PATH programs. What I presented there was so in your leisure -- and I hope you have some leisure -- you can compare how the territories that participate in the program to reduce homelessness compare in terms of the federal funds they received, the matching funds, the characteristics of the clients for American Samoa, Guam, the Northern Mariana Islands, Puerto Rico, and the Virgin Islands.
You can get a sense of who the clients might be, and there are several pages of that.
I also have an article from Fran Eisel, who has been working, as Jill said, for a very long time in the area. We had hoped that he could come and be here, but we didn't have any money to bring him. But we think kindly of him and hope to be working with him in the future. He has been working a long time in the area.
It brings up the importance of the informant, the key informant, how important that is in data collection.
As an epidemiologist, of course, I think national surveys, in-depth studies and clinical trials. All those things are wonderful, but I am a realist.
In the process of developing the data infrastructure and in the process of answering your questions, sometimes you have to go to key informants.
Sometimes you have to do the ethnographic or the intense informed study. Then you do your case studies and your epidemiologic surveys and whatever.
I think to improve data, we have to conceive of the data collection as more than just a national survey, to recognize the variety of mechanisms that are available and to honor the different mechanisms, and to understand there is nothing right or wrong about a mechanism. Is it appropriate to answer the question.
I want to say that we begin with the question and then go to the methodology. So, in terms of mental health, we have Fran's paper.
I am so glad Bruce could be here. The next thing in your handout is a concept paper which illustrates the SAMHSA approach to gathering data.
It is very collaborative. It is very focused on developing local ownership of data and working with people who collect the data and use the data.
So, there is a concept paper that describes the Pacific Islands collaborative initiative for substance abuse and mental health systems development.
I thought I would summarize it for you, but I thought he did such a beautiful job of writing it that I would just give you the whole thing.
Then again, some data, data on drinking and smoking marijuana, so that if people from the various areas, if you would check on that and you don't agree with it, let me know, because we need to improve our data collection, too.
Then specific programs in Puerto Rico, the treatment needs assessment. I mentioned that we have needs assessment for both treatment and prevention.
There are examples of some of the data. From the Virgin Islands, we have a description and I hope, Noreen, you will give me some feedback to see whether you agree.
Finally, I am so glad that we could have Dr. Arrya here. Johns Hopkins has been working very closely with us to do some in-depth studies on some problem areas.
Methamphetamine is a problem in the islands. It was back in the 1980s in Hawaii. I don't know what it is about islands, but I would like to explore that it is a problem.
They are also very much involved in the needs assessment. This is a nice background, and identifies some of the people in Guam and Samoa and the Commonwealth of the Northern Mariana Islands that are involved. I hope you will discuss that in more detail.
Then the discussion about drugs in Micronesia, because we think that when you go to any place, whether it is Poughkeepsie or Syracuse or Redlands, California, or Palau or Micronesia, it is important that you have a sense of context.
It depends on where you are. It is important to have constant standardized collection and case definition, but sometimes we have to understand meanings of words, concepts may differ.
The concept of one health item may not be a valid thing in another culture or another language. Sometimes your data can be different, depending on how you translate what you have. As I say, we end up with data. That is the good news.
So, those are examples of some of SAMHSA's programs. In terms of the processes, as I say, our priority is local ownership; that is, to go into the system and help develop local resources.
We are not visiting firemen who come and bring the word. We are there to help people find out what their needs are and to help them.
We want to develop a forum, so that people who use the data, collect the data, need the data, can discuss them and determine what their technical assistance and problem solving skills are.
So, there is a need for community work groups and we are working on that. As Dr. Iser had said, we are linking for the training, on both the counselors and educators, and also post-graduates, linking with the Fiji School or Medicine and the local areas of education.
I could discuss a lot about the need for flexibility and cultural appropriateness and informed decision making, all the things that we know about.
I would like to end with some issues for the committee to discuss. One is the development of local work force.
We talk a lot about computers, but I think we need more than computer expertise. We need more than somebody who will provide the hardware and software and service that. We need informed health statisticians or epidemiologists or behavioral scientists, or whatever profession you want.
They know what questions are appropriate, how to ask them, and what to do with the data once it is collected.
There are differences about the funding streams. At SAMHSA we are trying to combine the substance abuse and mental health so that we get the synergism of working together.
There is still legislatively and policy mandated ways of putting money into a data collection and infrastructure system, and everybody wants to get their report card, how they are doing.
When funds get mingled, and co-mingled, some people feel that is not appropriate because they can't tell whether they are doing a good job or not. So, funding streams is an issue and how to deal with that.
There are contract restrictions. There are certain requirements before any grantee can be approved. Sometimes that infrastructure isn't there. That personnel and experience isn't there, and how can you do that.
There is fragmented planning because of the distances involved and the turn over, the difficulty in making connections with the mainland.
Resources, as was mentioned, things have to be shipped in, including diskettes, and whatever.
The specialized services needed to document a program; for example, in Puerto Rico, in some situations the report is first written in Spanish and then translated into English. That causes some difficulty for reviewers who understand English and understand Spanish, but when it is translated it loses something, and it makes things difficult.
Then finally, the need for documentation. There are some problems that funds are allocated that are based on certain performances.
We may know there are good drug prevention programs in an area, but the data aren't being collected or they aren't being collected in a way that communicates that, and that makes it very difficult.
We had a situation just recently on the SINAR amendment. There were some monies that were kind of tied up because we didn't have the appropriate documentation.
When you go down there for a site visit, you see the programs are there and the services are there, but it is not being documented in an acceptable way.
That is a little bit about what we are doing and i am looking forward to some feedback on how to meet the challenges and what help you can give us, to change some of the requirements so we can do what we know needs to be done.
DR. IEZZONI: Thank you, Dr. Rouse. Quick comments or questions before we move on? Okay. We heard this morning, Bob, that some of the entities that we are talking about are not eligible to have Medicaid and Medicare, that others have Medicaid, for example, but may not get the same matching funds that the 50 states get. Can you tell us, from HCFA's perspective, about these issues?
MR. MAYES: I can try. HCFA is neither a young nor a small agency. We haven't recently been accused of being wiry or agile either. However, we do have presence, which counts for something.
We are actually trying to modify our approaches to reflect the changes, both at the programmatic and broader changes in the health care sector.
As you have mentioned, HCFA basically administers two programs, Medicare and Medicaid. The Medicare program, of course, we administer directly. Medicaid is administered by the states and territories through a grants program.
As was mentioned, the territories that we are discussing today have a slightly different mechanism for receiving funding than do the other 50 states.
What I would like to do, just to give you a brief idea, under Medicare we have, in this area of the Pacific Islands, Puerto Rico and the Virgin Islands, approximately 760,000 beneficiaries.
I don't have the numbers for Medicaid, but I believe it is roughly comparable as well. It is not a huge figure when you consider we have 38 million beneficiaries in Medicare nationwide, and that does have some implications that I will get into in just a minute.
What I would like to do is give just a brief status report on what currently we do and then, since we are actually right in the middle of some very significant programmatic changes in both Medicare and Medicaid, I think there are some real opportunities for great improvement.
They certainly would be areas of improvement. I would have to say right now we don't do a very good job of capturing data from these areas.
In terms of Medicaid, currently the reporting system for Medicaid is the Medicaid statistical reporting system.
It is made up of very highly aggregated data, basically some cost data, a little bit of eligibility data and some minor utilization data.
Unfortunately, when you begin to look at what gets reported out of these areas, you begin to discover that there are probably some fundamentally underlying infrastructure problems.
For the Virgin Islands we do receive basic data through the Medicaid statistical reporting, in pretty much all the areas that we cover.
Puerto Rico, however, we have continuing problems. We do get some data, although it is extremely limited and basically having to do with eligibility and enrollment.
For the Pacific Island areas, we get almost no data in the existing system. So, much of the information that might be obtained from this we cannot obtain at this time because we simply don't get the data reported.
I have to admit that we don't normally focus on, or traditionally have not focused on looking at our data at this lower level of aggregation. HCFA has tended to focus on looking at their data in very highly aggregated either national or regional, to some extent state, data.
On the Medicare side, we have a variety of other data sources. Certainly there is the administrative data that comes through the claims reporting, and that would be the same from both these territory groups as well as the states.
We also have the peer review organization programs, that tends to focus more on clinical quality improvement areas.
There is a peer review organization in Puerto Rico, a peer review organization for the Virgin Islands, both of which have offices in their respective territories.
The Pacific Island groups are handled out of Hawaii. So, there is a single peer review organization that handles both Hawaii and the rest of the Pacific Basin, and the offices are in Hawaii.
The peer review organizations have traditionally focused on the fee for service part of health care delivery.
They have, in the last several years, under the health care quality improvement program, been identifying opportunities for improvement in quality of care and in working with specific facilities to try to improve care.
There were, two or three years ago, the Medicare quality indicator system program, was an attempt to begin to develop a national base of quality improvement statistics over specific areas such as pneumonia, urinary tract infection, acute AMI.
Unfortunately, what happened there in terms of the areas we are talking about, is the sampling frames that were used, that basically ignored these small groups.
They simply were too small to fall into the sample with any statistical significance. There was a shift about two years ago to more focused on local projects, and in fact, all three of the PROs that I just spoke of did a number of local projects, along the same lines that some of the national projects were done -- mammography, diabetes, acute MI and the treatment around that.
I did pull out a list of some of the more recent projects. Unfortunately, I didn't go into great depth in looking at the projects reported out for Hawaii, but I did not see any collaboration with any of the other Pacific Island groups.
I am afraid that most of their projects focused on the Hawaiian Island group alone. Obviously, Puerto and Virgin Islands focused on their respective territories.
We do also capture information through the survey and certification process, through Medicare. Historically, we have had our difficulties with a number of the institutions in the areas that we have talked about.
The Virgin Islands have had some deficiencies in the past, as well as a number of the facilities in the Pacific Island groups.
That information, again, is just captured about the facilities, and not about individual care in those facilities. It has tended to be focused on structural aspects rather than process aspects of care.
Finally, we do have a number of surveys that we do. The current beneficiary survey in Medicare does actually include some individuals in Puerto Rico.
Again, though, their numbers are too small to do an analysis just on that group, although you might be able to draw some influences by including the Hispanic ethnic group at large.
So, what is the situation today? We get a lot of data. We have not historically focused on sub-groups, and therefore we haven't really done the kind of oversampling that might be required to begin to pick up statistically significant data.
For reasons that I think have already been brought up by a number of speakers having to do with the current infrastructure in several of these regions, it is unlikely that even if we did want to do some focused study on current data, that we would be particularly successful.
However, I believe there is a light at the end of the tunnel here. Both Medicaid and the Medicare program are undergoing some significant programmatic changes at this time.
In terms of Medicaid, we are moving from the Medicaid statistical reporting system to the Medicaid statistical information system, or MSIS, which I believe the committee heard a great deal about at other meetings.
This is a new system which will beginning to be implemented January 1, 1999. The major difference between the old reporting system and this MSIS system, is that the MSIS system will begin to capture information at a person level rather than at the aggregate level.
That will allow the types of analysis that are currently being able to be done on the Medicare data, so should offer some real benefit there.
There will be, I believe, some comparability issues because of the difference that was mentioned earlier in the way that the Medicaid program is structured in the territories.
Speaking with the Medicaid people just before I came down here, they have not done an analysis of what these differences might be or what these issues might be in any depth, nor do they have a specific schedule as to when the full implementation of MSIS would take place.
Again, a lot of the problem has to do with the fact that there is not really a well developed current infrastructure. So, the switch over to the new MSIS system will perhaps be made more difficult in these area, due to a lack of information infrastructure.
There is an increasing interest -- although we do not dictate to the states in Medicaid what type of system they should have, how they should structure it, there has been an increasing interest from the states in general -- and I would assume that the territories would be also interested in this -- in perhaps developing some consistent tools and consistent approaches that might be usable by the different states, to help them build their systems to be more efficient, effective, and to allow greater comparability between jurisdictions.
We are certainly encouraging that and we are looking at several projects right now.
One area that we are also looking at is to begin to do studies with the dual eligible populations. This is our attempt to begin to move and bridge our Medicaid data over to our Medicare data.
That sort of gets me into some of the changes that will be taking place in the Medicare program. The billing systems will continue pretty much as they are now. However, there are some significant changes in the peer review organization and the quality improvement program in HCFA.
The peer review organizations will be beginning their sixth round of contracts. They operate under a three-year contract cycle, starting in April of next year.
We are currently putting together the scope of work for that contract. The emphasis, although it has not been finalized, there are several issues that I think have an impact on this discussion.
One is that we will most likely begin doing a national surveillance, building a national surveillance system, focusing on a set number of clinical areas of interest to us.
We will begin to capture data on an ongoing basis, based primarily at this time on medical record review in this surveillance system.
The second area has to do with the way projects for the peer review organizations are structured. We are moving back, at least in concept, to the idea of national projects.
At this point we will probably identify five or six areas of clinical focus for the nation and require that all the peer review organizations do some projects in those areas using standard national indicators.
This would begin to improve the comparability of data across the country. That would include data that was captured in the territories.
However, we do leave open the possibilities for individual peer review organizations to do locally focused projects, to meet local needs, or special needs of local areas as well.
I don't want to make it sound like everybody will fit into exactly the same straight jacket. We are going to try to create a little higher level of standardization in those projects that we are interested in at the national level.
Also, we have made a shift in the last couple of years in HCFA. One of the problems we have always had is we tend to gather data, but we are not real good about getting it back out.
Part of the problem is not really that we don't want to do that. It is the fact that we are dealing with such a large size of data collection effort that it just takes a certain amount of time to get this stuff turned around.
HCFA is certainly in a wonderful position to provide comparative data, and that really is quite important at the local level, as well as at the national level.
One of the things that we have been working on over the last couple of years is to try to develop, rather than specific data requests that then people send in to us and they have to wait for us to get back some information, rather a tool based approach, where we are beginning to build a whole variety of generic tools that are available, not only to meet our needs in terms of the reporting requirements that we have, but can be used locally, so that local communities can do their own analyses, their own data collections, can modify the tools to be locally relevant.
Then, when we do actually get back the comparative data, they will be able to do some very close and apples to apples type of comparisons with the national and regional levels that will be seen.
That has been fairly successful. We do have these tools available out on the internet for free. We have had a large number of organizations using them, not only within the United States, but worldwide, actually.
In addition, there has been a significant increase in the reporting requirements for other than acute institutional care, certainly with the minimum data set requirements for long-term care, some of the up coming requirements for home health as well.
We will begin to provide a much more granular level of data and clinically oriented data at the individual person level than we hitherto have. That also includes managed care.
I think there is some real opportunity for us to increase the level of information you are getting, in terms of becoming resources that we make available to states and to other participants, such as the territories, in the Medicare and Medicaid program.
As I mentioned, for Medicaid, we do actually supply a large percentage of systems cost for groups that are reporting to us.
If you buy into the Medicare statistical information system, that is a very large percentage of those costs, indeed. So, there may be monies available to improve infrastructure through the Medicaid side of the house.
The Medicare side of the house, the peer review organizations are actually quite well staffed with the kind of technical experts and technical expertise that one would find useful in a local health infrastructure.
Historically, they have been fairly narrowly focused. However, under the new scope of work, there is a much larger emphasis on coordination with state agencies, not just the state survey and certification agencies, but in addition, the public health departments and others.
We have had some discussions on trying to set up a collaborative project with the public health areas in the states. These same sorts of projects would be available in Puerto Rico, the Virgin Islands and the Pacific Island groups as well.
I think we would be open to any sorts of proposals on specific projects that might focus on special populations.
As I said, as we move toward more granular data, this becomes a real possibility. We actually do have the data in place.
We have made tentative moves and are beginning to look at subpopulation groups. As I said, this has nothing to do with either Puerto Rico, the Virgin Islands, or the Pacific Islands, but we have had a project going on with historically black colleges, that has proven to be somewhat successful, and I am sure that we would be open for other recommendations or proposals for these types of projects.
The PROs are being instructed in their new contract to be far more open and collaborative. I would certainly encourage the health professionals in Puerto Rico, the Virgin Islands and the Pacific Islands to approach their peer review organizations and try to develop a greater collaboration with them.
I think I will stop there and if anybody has any questions, I would be happy to try to answer them.
DR. IEZZONI: I have been notified that Dr. Kanda will not be able to be here this morning. So, we only have one more speaker.
Maybe, Bob, I think that you can't stay with us this afternoon. Is that what I understand?
MR. MAYES: That is correct.
DR. IEZZONI: So, I am going to set you up right now. People can take pot shots at HCFA because he is going to be leaving. I am just being facetious.
If people have questions, including folks from the audience -- and people in the audience, if you could come to be microphone, because we are actually being broadcast on the internet.
We know who you are, but could you just introduce yourself for the people on the internet?
MS. GREEN: Donna Green, delegate from the Virgin Islands. I have a question. I have a lot of questions about Medicare and Medicaid, but probably some of them are not related to statistics. So, we will save some of them for somebody else on the staff.
One question about the funds that you said were available for setting up systems for the different territories, our experience has been, for instance, when welfare reform started and there was additional funding to set up systems and to provide for whatever additional administrative costs might be incurred, that that money still had to come out of our cap. It was not additional funding.
I want to be sure that if there is money for systems, that it is not out of the cap.
MR. MAYES: I have to plead the fifth. I have to say that I work on the Medicare side of HCFA. Up until our reorganization last year, we were quite compartmentalized.
I don't want to make any pronouncement on that. I could certainly, if you give me your card, get you an answer.
MS. GREEN: I think it is important that, when that money is available, that it comes out of a cap that is already limiting what we can do.
DR. IEZZONI: Bob, if you could get back to the representative on that, that would be very helpful. Vince?
DR. MOR: Bob, the data that I am most familiar with is the micro level data, at the individual level, from both Medicare and Medicaid, through a whole series of claims and things like that.
It is my recollection that most of those do not have any way to identify much in terms of the ethnic background of individuals.
Are there any plans afoot at HCFA for restructuring consistent with, I guess, the new OMB guidelines, and what are those?
MR. MAYES: That is primarily captured in the enrollment data. We are required to comply with OMB guidelines.
For those areas where we do capture race and ethnicity data, it will be captured in the format as put forward by OMB.
We do not have any plans that I am aware of to expand our race/ethnicity data, to modify any of our forms to begin to capture it.
DR. IEZZONI: Hortensia, do you want to comment on that?
DR. AMARO: I think what we have heard over and over again through different hearings we have had is the problem that that presents, when you don't have race and ethnicity data.
I wonder -- I am not sure quite -- I guess I am curious as to why there isn't a plan to expand how that is collected, or to revisit that, or perhaps a better way to ask it is what mechanism would you suggest we direct a recommendation to. In our experience, it is a problem.
MR. MAYES: Maybe I need to actually separate out the administrative financial data from the clinical data that we capture.
As the committee is well aware, we are going to be required to collect our administrative financial data the same way everyone else is required, vis-a-vis the HIPAA regulation.
DR. IEZZONI: HIPAA is the health insurance portability and affordability act that Bill Clinton signed in August of 1996. We will probably talk about that more.
MR. MAYES: That mandates national adoption of certain data standards, primarily in financial and administrative transactions.
DR. IEZZONI: For electronic transmission of data.
MR. MAYES: Which we do pretty much completely on the Medicare side. So, in terms of the changes to that side of the data collection, we cannot do that unilaterally. That would have to go through whatever content committee finally gets approved through the regulatory process.
Now, we do have more scope and flexibility in terms of, for instance, these peer review organization projects.
Obviously, if we were to set up a project that was particularly focused on a particular ethnic or racial group, we would have the flexibility to collect that information and, really, to collect it however we wanted for the purpose of quality improvement and quality review.
In terms of what you might be able to recommend, that would go back to being able to recommend or work with the peer review organization structure to try to come up with a strategy for beginning to look at some of these problems in a focused manner, through either Puerto Rico, Virgin Islands or the Pacific Basin group, the organization there.
We could collect it differently in a focused way. It is just that our large scale data collection efforts, which are basically our administrative and financial, we are a little bit restricted as to what changes we can make in them.
DR. MOR: If I understood your answer to my question it was that in the enrollment data for all people in the Medicare and/or Medicaid program, there will be, as of whenever it is -- next year or the year after -- the new OMB requirement for race and ethnicity coding. That will then be available for analysis and retrieval and reporting. Is that correct?
MR. MAYES: Wherever we are now capturing race and ethnicity data, we will be changing over to the OMB.
DR. IEZZONI: Even on the UB92?
MR. MAYES: Well, we won't be using UB92 any more.
DR. IEZZONI: Well, the UB92 equivalent, or whatever the standard is.
MR. MAYES: I don't believe it is on that 837.
DR. IEZZONI: It is not on that encounter form. Okay.
DR. AMARO: I think the problem is the linkage in most places between the enrollment and other data in terms of race and ethnicity. I guess I am not sure whose problem it is.
MR. MAYES: Well, as part of the health insurance portability and accountability act, the standards requirements, I think that you will find, at least within that set of financial and administrative transactions, far greater ease in linking across those, and of course not only claims, but equivalent encounter.
It will be much easier. The data elements across those transactions will be normalized. That will offer some opportunity.
The problem is, of course, it will not be a very flexible mechanism for altering what it is that you capture. It can no longer be done just by a particular group, even as big a group as HCFA unilaterally.
Any changes applied to those standard transactions apply to everybody in the country doing those standard transactions.
DR. IEZZONI: Let me just ask our representatives from the Virgin Islands and Puerto Rico and from the Pacific regions who do participate in Medicaid and Medicare, to what extent you are gearing up now for the new electronic transmission standards that Bob Mayes spoke about, and to what extent you feel informed about what the new electronic data transmission standards are. Dr. Michael?
DR. MICHAEL: I am not aware in the Virgin Islands. We have a director of the medical assistance program who deals with Medicare and Medicaid. I am not directly aware of what is going on there. I will check when I get back.
DR. IEZZONI: The fact that you are very involved in health data and aren't aware of this is telling me something. Dr. Zamora, how about in Puerto Rico?
DR. ZAMORA: The same situation as in Virgin Islands. We are also under health care reform and we are using part of Medicaid's monies to pay for managed care services.
DR. IEZZONI: Do you know whether you are moving toward the same electronic transmission standards?
DR. ZAMORA: The same situation as the Virgin Islands.
DR. IEZZONI: How about the Pacific entities? Do any of you participate in Medicaid, Medicare? Can you tell us a little bit about your experience?
MR. CAMACHO: Echoing the Virgin Islands and Puerto Rico.
DR. IEZZONI: This is important information for us actually.
MR. CAMACHO: Within the Guam Department of Public Health and Social Services, the division of public health is primarily that particular division that takes care of the Medicaid and Medicare program on Guam.
In addition to those two programs that are available, we also have a local program called the medically indigent program.
That is a local government program that is 100 percent locally funded to provide health care services to those individuals who may not qualify for the Medicare or the Medicaid programs.
We are in the process of upgrading our departments information system. The first phase of that will be with the division of public welfare, because of the requirements for welfare reform and also because of the fact that there are certain requirements that that particular division needs to comply with to continue participation.
DR. IEZZONI: So, specifically, these electronic data transmission standards that the Federal Government is promulgating will be considered in what you are doing for your information system upgrade?
MR. CAMACHO: It should be part of that.
DR. IEZZONI: Does anybody else want to comment?
MR. UELE: I have a question on Medicare and Medicaid. I would like to say that we are in a transition separating hospital from the department of health. We have some problems in where is Medicare and Medicaid going to fit.
My question is, can we have it at the department of health? Public health is under the department of health. The hospital is trying to take it. So, we have that open right now.
DR. IEZZONI: It looks like some of your colleagues might have some suggestions or advice for you.
MS. GREEN: I was just going to suggest that you speak with Dr. Michael. We have just separated our hospital from our health department and have gone through some of those same problems. I think a lot of us are thinking about putting them back together.
DR. IEZZONI: Be forewarned.
MR. HANDLER: I have one comment in terms of race reporting and OMB standards. Another person in my office I work in, Tony D'Angelo, was on the OMB interagency committee.
People are probably aware of it, but maybe some are not, that in the year 2000 census there will be multiple race reporting, where a person can check as many races as they want to check.
That really has an implication on everything that we do, because that is the denominator and we provide numerator data.
Now the same committee is wrestling with the idea of how are we going to present the data once we collect it. If a person reports more than one race, do we say a person is saying one or more times -- how do you make combinations and how do you present the data.
We are all going to have to address that at some point. Things are going to get harder, not simpler.
DR. IEZZONI: Our subcommittee, in June, actually heard from the Bureau of the Census. They actually create something like 260 categories of different combinations of this, that and the other thing.
I think this is going to be very interesting, to watch how this particular issue plays itself out.
Why don't we finish with Dr. Montopoli, and Bob, you are off the hook. I think up to now, I think that one of the things that we will want to return to in the next day, as we talk about the kinds of things that would be helpful to you all, is education about electronic data transmission standards.
As you are thinking about developing your health information systems, to what extent are you going to want to be in parallel or consistent with transmission standards that, through HIPAA -- the health insurance portability and accountability act -- in the 50 states pertain to every health care transaction, not just the federal health care transactions, but every health care transaction, by private companies, by public entities, et cetera.
I think it is a big change for us within the 50 states. We know that we haven't done the best job of educating everybody who needs to know about this here.
I think that getting the message to the most distant among those who are affiliated with us is going to be an important challenge for us to pick up.
DR. AMARO: I am wondering, in addition to thinking of training mechanisms so that people become fully informed on what do these regulations mean, that we have taken a lot of time in the community to hear from the corporate sector, the public sector, about what do they see as the potential impact of these regulations on the resources that it is going to adapt to them, et cetera.
I am aware that we really haven't heard from folks around this table who probably would have very different answers to the impact that these regulations would have on them, the kind of resources they would need to adhere to them.
I really am beginning to think that the committee needs to expand on the input we are getting to include the folks sitting around the table.
I am not sure quite -- this probably is not the right meeting for that, but maybe we need to think about how we are going to do that.
I think the challenges that they will be facing are probably substantially different than the people we have already heard from, who have much more resources and sophisticated system and trained staff, et cetera.
DR. IEZZONI: I agree. Let me just say, though, that we have heard -- for example, in June of 1997 we did hold hearings in California about some of these issues, and we heard from L.A. County, that was confronting a huge deficit in their health care.
They were trying to figure out, okay, should we spend the money on upgrading our computer information systems to be HIPAA compliant, or on providing services to our community.
So, you know, even within the mainland of the United States, these issues are very, very pressing. Computers are expensive and the people and the software systems and so on are equally so. Hopefully we will hear from you on that later today.
Dr. Montopoli, you are standing between us and lunch, which is always the least enviable position.
DR. MONTOPOLI: Well, I am close to the door.
DR. IEZZONI: You are close to the door. So, from the Department of Energy, let's hear from you.
DR. MONTOPOLI: I am Dr. Mike Montopoli. I work in the Office of Health Studies at the Department of Energy in Germantown, Maryland.
Someone asked me during the break this morning, well, what is the Department of Energy doing out in the Pacific. Are you providing electrical power during these brown outs that Dr. Iser referred to.
That is an excellent idea, but no, that is not why we are out there. Our predecessor agencies, of course, in the Department of Energy built nuclear weapons and the Marshall Islands was a site in which these weapons were tested.
So, we provided energy in a very different form out in the Pacific, by doing nuclear weapons testing back in the 1950s.
During one of these tests, groups of individuals on two atolls in the Marshall's Island were exposed to radioactive fallout.
In compensation for this, the Congress required and ordered the department to provide medical care for these individuals. There were approximately 170 initially. There are now about 140 left. We also added a comparison group at one part.
So, it is a very, very small program of about 250 individuals who currently fall under our special medical care program in the Marshall Islands.
I think in terms of this meeting, there are perhaps a couple of areas of common interest. We, of course, have been collecting a lot of data on the group we have cared for over the years.
We have been treating it more as a case series. Every five years we issue a report that reports the status of the individual patients that we have evaluated in the program.
We decided last year, under the leadership of Dr. Paul Seligman, who is the deputy assistant secretary in our office, that really the program needed to be changed.
It had been run as a twice-a-year medical mission composed of volunteer health care providers, physicians and others who were dispatched to the Marshall Islands for a month at a time, twice a year, and provided intensive medical care to the affected populations, and then left.
They basically brought in everything, all of their equipment, all of their medications, and all of those things left with them, speaking simplistically, when the group left.
We heard from the communities that this was really not satisfactory. The populations felt that they were aging, they were developing chronic diseases that may or may not have been related to their radiation exposure.
In any case, they needed a more ongoing community-based primary care system rather than these medical missions that I described.
Last year we issued an RFP, a request for proposals, and went through a competitive bidding process. We are undergoing a transition now from this program I described to a community-based system, which has yet to be defined, but which will certainly consist of Marshallese medical care providers, probably medical officers, supplemented by U.S. based health care providers -- family practitioners and specialists as needed.
We have selected for award an organization called the Pacific Health Research Institute, which is based in Honolulu and is affiliated with the University of Hawaii, and Straub Clinic, both also in Honolulu.
We are very excited about this relationship. We are about to enter into negotiations with the group to define the program.
We have in mind three goals, one being, of course, providing the Congressionally mandated medical care to the affected population, in treating radiation related illnesses.
Secondly, we will provide medical care for other conditions as resources permit. The budget for the program is approximately $1.1 million per year, and we expect that to remain fairly constant.
Thirdly, it is to build public health infrastructure. You know, we are somewhat disappointed that we haven't done this to date. The program has been in operation some 40 years, and we have really done very little to develop either the human resources, in terms of training individuals to provide medical care and ancillary services, or in terms of providing the physical infrastructure, such as laboratory and X-ray equipment and so on. So, we would like very much to enhance that part of the effort.
I would include in enhancing infrastructure enhancing the data collection capabilities, not only for our program, for our immediate needs, but for the Marshall Islands in general.
I think the more we understand about health in the Marshall Islands and the Pacific in general, the better we can measure how well our program is performing.
I think we would be very interested in working in partnership with other organizations in developing health data systems, and developing case definitions as we discussed earlier, and other elements of effective data collection.
As Lisa mentioned, it is lunch time. So, I think I will stop there and if anyone has any specific questions, you can ask me now if there is time, or over lunch. I would be happy to answer them. I expect to be here the rest of today and tomorrow.
DR. IEZZONI: Great. Thank you. That is a great invitation. Why don't we take you up on it. Why don't we take a break. Why don't we give ourselves a little slack and return at 2:00.
The people -- there is a cafeteria in what is called the penthouse. It is up one floor. Then there are a number of places locally, but it is very hot outside, so you might want to just try upstairs.
[Whereupon, at 12:45 p.m., the meeting was recessed, to reconvene at 2:00 p.m., that same day.]
DR. IEZZONI: We are going to start the afternoon session. Hopefully everybody has had a chance to get some lunch that included some caffeine, if you are inclined in that direction.
I think this afternoon will be very, very interesting, and I want to make sure that we are all alert to hear all the pearls of wisdom. So, if everybody could take their seats, Hortensia, could I just ask you a question?
Before we start, I would like to introduce Yvonne Benner, legislative director of the Office of the Honorable Carlos Romero Barcelo. If you could stand at the microphone so that the internet connection can hear us, that would be very helpful.
MS. BENNER: Actually, my boss, the resident Commissioner of Puerto Rico, was supposed to be here. I don't know if you are familiar with the fact that we presented a bill for self determination for Puerto Rico, and the Senate committee is considering the two bills -- the House version and the Senate version -- actually it is probably going to be all day today and tomorrow.
He has been completely taken over there. But he was very insistent that I come here, because this is something that he has been struggling with since he took over, and I think probably before. He was mayor of San Juan and he was also governor of Puerto Rico twice.
One of the things, we want to thank you very much for holding this conference. We think it is very, very important.
I think that recent events like the children's health initiative pointed out the need for collecting good statistics on the island.
Perhaps we are dealing with something on one level here and we are dealing with it on a different level, in that how does the data that you collect get translated into money for the states and the territories.
That is where we are short changed all the time, even though the territories are people who are American citizens.
Therefore, we come to, in the country, sort of a policy that discriminates against American citizens by virtue of the fact that they live in the territories.
This is one thing that we are very concerned about and that we really want to change, and that we would like to urge your help in addressing.
With the children's health initiative, what ended up happening was that all the briefings that were held by the administration, my boss was there and, did you consider the children of Puerto Rico?
Oh, yes, Carlos; it is all taken care of. You don't worry about it. He had the President's commitment; he had the Vice President's commitment, Secretary Shalala's commitment, everybody's commitment.
When push came to shove and the funding allocation came out, we got $9 million, which was far short of the $60 million that the children of Puerto Rico would have gotten.
His point is, how can you discriminate. How can you effect and enact programs that actually discriminate against American children, just by virtue of the fact that they live in a place that is not the mainland United States.
I think that there are other legislative proposals in Congress that we are also looking at. Puerto Rico and I am not sure about the other territories, our Medicaid is capped at $167 million.
That has been the basis for a lot of decision making in terms of what allocation Puerto Rico would receive.
In terms of that, there are several proposals in Congress that would tie in women's treatment for breast cancer, for instance, to Medicaid.
Our Medicaid is capped at $167 million. That is not even 10 percent of what we would receive if we were being treated as a state.
What he means is that our women are not going to be able to get that treatment which, in effect, ends up being discriminatory to American citizens.
Again, as you are going forward, we are really excited about the conference. We would like to consider the big picture and look at the numbers in terms of what do they mean and how the statistics you develop here are so important for us in a broader way and also in a way that equally all citizens of the United States can share.
I think this is what he would like to see come out of the conference. We are really excited to be part of it. We are excited that Ruth Zamora is the representative for the department of health.
We would like to offer our support for anything and everything that you all have, and anything that we can do with the Hispanic Caucus or in Congress, we would be glad to help you with.
DR. IEZZONI: Thank you. Are there any questions of the subcommittee for Ms. Benner; comments?
Okay, thank you very much for your comments. We will certainly consider them as we are thinking about our recommendations for the Secretary.
All right, Dr. Zamora, you are first on the afternoon's program.
DR. ZAMORA: I don't know if that is good or bad. First of all, thank you for your invitation. It is really an excellent opportunity to let you know what Puerto Rico is doing and to familiarize with what other territories are doing.
I am going to follow the questions that you sent us. If I take too long, just wave me.
Puerto Rico is a very small island. It is the biggest of the smallest of the islands in the Caribbean. It is 35 miles by 100 miles and it has around 3.9 million inhabitants.
We have 78 municipalities, which each department has different regions. Since 1994, we started health care reform, which it is focused on managed care.
The department of health used to offer all the primary, the secondary and tertiary services to the medically indigent population in Puerto Rico.
Now we are selling the facilities and we have private health insurance coverage for the medically indigent.
Now the department of health has new functions, which it always had, but now it is their primary function. We use as a frame of reference the core functions recommended by ASTO, and we are in that transition period which everybody knows is the hardest part.
Regarding the health data and statistics that we gather, we gather vital statistics on a daily basis, because we have, in the 78 municipalities we have registrars. They are tabulated and published on a yearly basis.
Paper publications are distributed to government officials, public and private agencies, locally and abroad.
Also, we collect data regarding AIDS prevalence, immunization, communicable diseases, the LORK registry. I am not sure if you are familiar with that term, the LORK.
DR. IEZZONI: No, why don't you --
DR. ZAMORA: This was by the end of the 1970s and the beginning of the 1980s the pediatricians noticed that a lot of girls had premature sexual development.
They tied that to the hormones that were given to the chicken to lay more eggs and the cow to milk more milk. So, they had this study and they are following these cases for those many years, of those kids that presented that had premature sexual development.
We also have a cancer registry. We also participate in the behavioral risk factor study by CDC.
The only problem that we have is that 75 percent of the population in Puerto Rico have phones. The rest, 25 percent, do not have phones and they are not included in the behavioral risk factor.
So, we asked the CDC to let us do household interviews to balance that sample, and have representation of that 25 percent that were not included in the 75 telephone interviews.
Also, data regarding health services provided in the private and public sector are provided. Also, we have a registry of health related human resources. That is every other year. We have a registry and we have added a lot of information and we have a publication.
Regarding mental health, addiction, and alcohol data, we do some data collecting in that area, but we surely would like to see more, and to be more representative of the general population. Right now what we are doing is small sample studies.
We also have a study very similar to the health interview survey, which CDC coordinates. We don't receive money from the health interview survey, but we have a Puerto Rican style health interview survey.
It is the only study that gathers data related to morbidity. We redesigned that study because we realized that data by municipalities was really, really important.
From 2,000 households, now we are going to visit 20,000 around the island. We are going to have representation from each municipality, a randomized sample, so that we can weight that data to have information by municipality.
We are planning to include mental health and drug addiction information. We are also going to revisit a smaller sample so that we can evaluate prevalence of whatever conditions we find in the first visit.
The quality of the data that we gather is classified as excellent; not timely, but excellent in its content.
One of the things we would like to see is to have this data available in a timely manner. For example, we are working in the publication of 1995 vital statistics. So, we would like to see that happen quicker.
We have a centralized information system. We have a main frame. We are trying to make it user friendly. We just started our internet in the department of health. So, we all have e mail.
We have been waiting for that for a while. We are working on our internet page, but we, who are working on this, are the same who are working on the internet page and the publications. It is the same story everywhere, I think.
Regarding the gaps that we have, we think that the analysis of the aggregate data is very technical, and experienced people need to get involved in these tasks.
Traditionally, data is gathered and published in tables and tabulations, and no analysis is made. Up to now it is made by the people at the department of health.
We think that we have to improve that. We have the tabulations. We have the tables. We have a lot of tables and a lot of data, but it needs to be analyzed.
More skilled and trained personnel are needed in order to comply with these new functions and do this analysis. The most advanced computer technology is also required.
Again, data regarding mental health for us is very, very important. I think that now, more than ever, we are looking at a holistic department of health.
Previously, the mental health and anti-addiction service was not part of the department of health. Now it is part of the umbrella of the department of health.
The lack of integration of the different systems and agency data is the greatest gap at present. If the people from the AIDS division want to know something about mortality data, they have to call me and ask for that data.
Either one way or the other, we have to ask for information from one to the other. The integration of these data bases will reduce the time consuming bureaucratic processes that need to be followed at present.
Another limitation or gap is the timeliness of the availability of data. Eventually the data will be available, but not when needed. This is mostly a technical and human resources problem.
What resources do we need? We need human resources. We need to retrain personnel. We need to hire new personnel. That sounds familiar to everybody.
The situation that we have is that we are selling the facilities. The people who are primary care givers who usually have the analysis dexterities that we need to analyze all these data, we need to hire more people.
Informatic consultants, I think that where we are, we need consultants. We need to transfer the experience to our staff.
We need to reduce redundant data gathering. We realize that if people go through the system, they are asked the same questions over and over, and we would like to reduce that.
We would like to see integration of different data bases. We would like to see access by different sectors, and we would like to see more people accessing our data bases.
In April 1997 we had a technical assistance visit from -- let me read it. NANSIS(?) and NCHS had a technical assessment team visiting our facilities. They spent three days.
I would like to read to you their recommendations. This was in April 1997, but I think they are relevant to this meeting.
Regarding staff issues, their recommendation was increase the number of trained statistical staff to manage the various data systems, prepare a statistical analysis, prepare reports and respond to outside data requests in a timely manner.
Increase the number of system programmers to provide high level support to statisticians. Provide training for PES statisticians in the use of standard statistical analysis packages.
Make the statisticians responsible for preparing tables and analysis for technical reports and for response to outside data requests.
Develop a plan to introduce automated causes of death coding when the ICD-10 is implemented.
NCHS is committed to facilitating staff training and providing technical assistance.
Regarding technical improvement, develop a detailed, written plan for automated data processing and establishing LAN and an internet system, and for establishing EBS and EDS following accepted guidelines and procedures.
The plan should include instruments and resources needed, with careful attention paid to support and training of staff, and for maintenance and upgrading of equipment.
Work with NCHS to investigate options for implementing the automated cause of death coding through a super MICAR, MICAR and ACME for ICD-10. We are working on this even as we speak.
Make PCs and main frame work stations available to statistical staff. We complied with that. We bought a lot of computers.
Adopt standardized user friendly statistical software packages such as SASS or SPSS for both the main frame and PCs.
Well, we are trying to decide which we are going to use, because there are SASS funds and SPSS funds. You know, it happens everywhere.
Upgrade quality assurance in data entry by utilizing built- in controls at data entry and by using electronic double entry.
Regarding output improvement, develop a detailed data flow chart for each health data system, to facilitate identifying bottle necks and problem areas.
Revise the content of annual statistical publication to eliminate unnecessary detail, and include new tables needed for program evaluation and management decisions.
Provide tables that focus on major health care reform issues and on year 2000 goals. While the review team is prepared to make some specific recommendations in this regard, a complete revision taking into account needs of users inside and outside the department of health is in order. We are working on that also.
Adopt standards controlling minimum frequencies for cell entries in tables and minimum denominator sizes for calculator rates.
Clearly indicate if tables are based on place of residence or place of occurrence.
After streamlining the content of standard tables, develop table shells that can be refreshed annually.
Adding substance abuse and mental health questions to the health interview survey. We are working on that.
Plan to expand the health interview survey to provide reliable municipality level estimates. We are also working on that.
One of the things that I would like to see at the state level is that they provide a map of Puerto Rico in their maps. We have the data, but we are not included in the maps and we would like to see that.
In all the data bases that CDC has, they have all our data, but we are not included in the maps. Also, the people -- Mary Anne Freedman and George Gay knows that my frequent complaint is about origin and nationality.
We have a saying in Puerto Rico that until you see somebody's grandmother, you don't know which ethnic group you are.
We are multi-racial in Puerto Rico. Sometimes that emphasis on racial and ethnic background, we would like to see analysis considering educational level or economic level, besides the ones related to ethnic and background.
I think that is basically it. If you have any further questions?
DR. IEZZONI: That is an excellent overview. Dr. Zamora, your comments, then, on the new OMB directives about race reporting, the fact that you can tick off more than one box, is this something that you have thought about in the context of Puerto Rico?
DR. ZAMORA: In our last meeting, the guy from the census went there and tried to explain it. I look white, and I am Hispanic. If you see my family, you see all different kinds of people.
I don't know what is going to happen. Basically the people in Puerto Rico will write mainly racial. I don't know what is going to happen.
I think that will be quite confusing. When you live in Puerto Rico, that is not a thing that you think about all the time.
I don't know if I explained myself, but sometimes you have a question and you leave it blank because you don't know.
You have dark people with straight hair and people with course hair who are white and have green eyes. So, you don't know.
DR. IEZZONI: Dr. Iser, do you have a comment on that?
DR. ISER: Just a quick question. Does PAHO talk to you and Dr. Michael and require statistical data, much as RPRO does for the Pacific Island jurisdictions?
DR. ZAMORA: Yes.
DR. ISER: For example, Guam is essentially treated as an independent country in many regards by the western Pacific regional office. Is that true for Puerto Rico and the Virgin Islands?
DR. ZAMORA: Yes, we have an excellent relationship with the World Health Organization and the Pan American Health Organization.
As a matter of fact, we have a lot of projects going on, like for example, the development of the health situation analysis unit.
We are invited to the PAHO meetings, and we don't have like representation. But we send our data tapes to PAHO and World Health Organization.
We also are included in the publication of the Health of the Americas. I don't know the technical name of our affiliation with them. We are part of the states, but we are invited to their meetings and we have a relationship with them.
DR. HARDING: I appreciate your presentation. You talked a lot about the need for development of data bases and electronic information and so forth.
I work in a hospital in South Carolina. It is a thousand beds and we are upgrading those things, too. It is easy to get the money for computers. What is hard for us in South Carolina is to get the people to run them.
Do you have the infrastructure, the educational infrastructure in Puerto Rico to develop those data processors, statisticians, and all those things that have to run those doggone computers.
DR. ZAMORA: Yes.
DR. HARDING: You do have that infrastructure set up so that you will have the feeding of the people able to run them?
DR. ZAMORA: We have the infrastructure. We had a main frame since 1975, 1972. We have, now that information systems is under my supervision, what we are trying to do is retrain some of the personnel existing at the department of health. We have been very, very successful in that retraining.
Another thing we would like to see is for the statistician to be able to analyze the data. Right now if I want any analysis from the data base, I have to call a programmer and say, look, this is what I need.
He prints whatever hundreds of trillions of paper and he sends it to me. I look at it, well, this is not really what I asked for, and I send it back and send new instructions.
What we are trying to do is to have extracts from those data bases that we can analyze through our system, and make those publications go out faster.
DR. HARDING: You have people, then, in your technical colleges who are being trained right now for that specific type of function?
DR. ZAMORA: Yes.
DR. HARDING: Wonderful.
DR. ZAMORA: We are trying to coordinate with those colleges and universities to have students come to our facilities and see what we are doing and get them involved.
The problem that we have is that the salaries that we offer are lower than the private sector. We have to compete with that. We are training them and they are going out.
DR. HARDING: I work in a not-for-profit hospital and we have that same thing. Anybody good, in effect, goes to private industry for twice the salary.
DR. ZAMORA: We should be part of the education of these people and we could retain them for a longer period of time.
DR. IEZZONI: Ms. Benner, do you have a comment on that? If you could come to the mike?
MS. BENNER: What I wanted to say, Puerto Rico has 14 higher education institutions. Ninety-two percent of the high school graduates go on to college, which is unheard of in the United States.
So, we do have an outstandingly educated -- and education is mostly free if you maintain a 3.0 average. These are things that people don't normally know, but you have a very strong and very well educated base. I think it is working more with the universities perhaps.
DR. IEZZONI: That is very helpful.
DR. ZAMORA: We also have a school of public health and four medicine schools.
DR. IEZZONI: Hortensia, you had a couple of questions.
DR. AMARO: Yes, we are very interested. You said that the health care reforms that Puerto Rico is undergoing include, you said, the development of a system to track medical services through the private and public sector.
I think the committee would be very interested in hearing more about how you handle tracking of individual level data.
I think you mentioned to me a little bit about unique identifier. That would be question number one.
Question number two is, as you have turned sort of the corner on managed care, I was wondering whether there was any effort to develop systems to evaluate the performance and outcome of managed care companies, particularly for Medicaid managed care populations.
That is another area of interest to this committee. We have another whole working group on that issue, and we really haven't heard from Puerto Rico at all on this.
We have visited a number of states and are doing studies of how different states are doing this. If you are developing this, I think it could inform us as well.
DR. ZAMORA: When the health care reform started, the government of Puerto Rico established a health care administration, which is an independent administration. It is a public administration, but it is independent from the department of health.
They are the ones in charge of the bidding process and everything, to contract private health insurance companies to provide the coverage and the services to the medically indigent population.
They have process evaluation and they have a contract with the PRO that we have in Puerto Rico. They also are implementing the HEDIS system.
They work separately from the department of health. They are doing all this work and we provide them the data about certified people, the ones who qualify for Medicaid and whatever mortality data they need, or whatever data they need from the department of health. But they work independently from us.
Regarding the unique identifier, the governor has an executive order that the unique identifier in Puerto Rico will be your social security number. That is required by the executive order that the governor just signed.
We are in the process of developing an evaluation of managed care. It is more an evaluation of the health care reform, because the evaluation of managed care, remember that the services are provided by the health insurance companies and their network of providers. So, they are the ones who are evaluating the process.
Through their literature revision that we made, the experts say that you have to wait from five to ten years to have your model established to evaluate outcomes.
What we are doing is, we are developing an evaluation tool to evaluate the changes in the department of health due to the health care reform, which not necessarily relate to outcomes. It is more reengineering and reducing the size of the department of health and things like that.
DR. IEZZONI: Dr. Zamora, the reason that you saw our subcommittee looking at each other when you said there was an executive order that social security number become the health identifier is that this is an issue that is currently under discussion in the 50 states right now.
In fact, there is a strong group of people in the country who believe fervently that social security number is not the right way to go.
There is an equally fervent number of folks who question the appropriateness of having a unique identifier for the health care system.
Can you tell us about whether there was any discussion in Puerto Rico before the executive order was issued by the governor, and whether there have been any difficulties in implementing that executive forward as you went forward.
DR. ZAMORA: That executive order came out about a month ago. Regarding confidentiality issues we are very clear, at least in the department of health, that any information that is related to confidentiality matters represent aggregates.
If there are less than 10 or 15 cases, we don't present the data for that specific municipality or that specific condition or whatever.
We have been working with confidentiality issues before the regulation for the use of social security was established.
One of the big issues is the AIDS registry. They are figuring out, I think, another kind of -- they are going to use the social security but they are going to use another identifier.
DR. IEZZONI: This will be very interesting for us to follow. One of the reasons that we have heard that social security number wouldn't be a great unique identifier in the United States, the 50 states, is because often Social security number is shared by members of the family.
There can literally, in some cases, be hundreds of people with the same social security number. It would be very interesting to see how things work after this period of kind of beginning to implement the governor's executive order.
DR. ZAMORA: In Puerto Rico we have -- there is a close relationship with the social security and the registrar. When a baby is born, they have their social security number and it is included in their birth certificate.
We follow up these babies with immunization programs, so we have an exchange of information between the registrar and the immunization program. We would like to see the whole loop continue.
We also are connected with the WIC program and we give follow up for those kids who didn't get their immunization on time.
The First Lady sends a letter and they have a phone call with the voice of the First Lady. There are a lot of programs. Within the immunization program, we have an excellent program.
We are interconnected. But still, we would like to see more efficient things and have this information on a timely basis.
We receive, on average, 20 calls per day for vital statistics data. They call us for different purposes.
One lady called us to see if we had a registry of implants, how many implants we did in a year. We didn't know that, and how many ounces of orange juice people have during the day. They ask for all kinds of information.
We know we have a certain amount of information that we can gather, but we would like to make it available for more people to have a grip on what is going on in Puerto Rico.
DR. IEZZONI: Are there other questions or comments from the committee or around the table and the audience?
This has been very, very interesting. We look forward to hearing more tomorrow as we begin to talk about recommendations around the table. Thank you, Dr. Zamora. Dr. Michael, we are going to hear about the Virgin Islands.
DR. MICHAEL: Actually, I am sorry I was late getting that. I had some computer problems.
I have a lot of things written down. I might skip some and say some other things that I don't have written down.
I actually would like to begin by thanking the committee for the invitation to come to take part in this discussion, which I think is really very important and critical to all of us that are here.
As the director of health statistics in the department of health in the U.S. Virgin Islands, I am particularly interested in both the topics for discussion and the broad policy topics that we were asked to consider and make remarks on today.
To assist me in the development of my remarks, I followed the topics for consideration closely in organizing my remarks.
Before I get started, though, I would like to make some remarks relative to the scope of my presentation. As you saw earlier, there are things going on in the Virgin Islands that I don't know about.
The remarks that I am going to make here today speak primarily to activities within the Virgin Islands department of health.
On a very few occasions, brief comments will be made about current practices and activities in the two hospitals, and that is all we have in the territory, relative to health and health related data activities.
Although I attempted to obtain information from both hospitals, I was unsuccessful in getting the information to the extent that I think I would be able to do justice in really speaking to their practices.
Second, I would like to point out that I also tried to solicit information from all the individuals within the department of health that are directors of federal programs, but did not get input from everyone.
So, in some instances, the information that I present will reflect my best understanding of ongoing practices within the department as an organization.
In instances where I did get input from the program managers or directors, I did try to incorporate that into the remarks that I will be making.
So, I am going to follow pretty much the format for the section that is topics for consideration.
Capacity to collect health and health related data, to include types and amounts of resources available in the jurisdiction.
That is what -- I redid a spread sheet with some information on our federal grants, but I couldn't get it printed out. I was using a different software.
Basically, what I received from the federal grants management office listed for the Virgin Islands different types of federal funding that we get.
I will just cut to the chase and say that our budget for the department of health locally is less than $35 million.
A lot of the things we are able to do because of much of the federal funding that we receive.
We have various categorical grants to include a community planning grant, which is tied into our HIV program. That is roughly $378,000.
We have a rural health initiative, community health center which I believe is our 330 programs.
Beatrice spoke about the PATH program and we do have some monies for that, the SSDI state system development initiative and MCH -- and I have worked actually a lot with them on that -- the BRFSS survey, it is going on right now in the Virgin Islands.
Family planning, our breast and cervical cancer initiative, I believe it runs from 1996 through 2001, and actually we got a pretty substantial grant award.
We have tuberculosis elimination, HIV/AIDS surveillance, and our emergency medical services grant, to improve data collection, STD grant awards, immunization program that I will mention some more in my actual presentation.
I think we are doing some exciting things in the Virgin Islands in immunization, trying to set up a system down there.
That program actually has helped us in vital statistics by providing monies for us to get software developed, to one of these days get our electronic birth certificate system in place.
Last September we received, I believe -- Dr. Koo may have mentioned our grant that we got, the NPCR grant that we got to try to get a cancer registry going in the area.
Amelia is here, as part of the CSAT CDC contract, to do a family of studies in -- I don't want to get it wrong. I think it is substance abuse.
We also have several block grants, abstinence education, MCH and SCSHCN. We have a preventive health, rape program, our chronic disease, substance abuse prevention and treatment, and of course, our community mental health grant.
WIC is one of our programs, I think it is our largest federal grant, over $6 million. Medical assistance, department of education block grant, but it is administered through the department of health, our infants and toddlers program.
Police department, highway safety, EMS training and child seat program.
I got the printing of this, but I notice that the BRFSS program is not on here. All that means is that it is not classified as a federal account. It is a special account.
The thing about this is, when the question came up, which is what amount of resources is available federally and locally for collection of health related data, I wasn't able to tease out that part in all of these monies.
I do know that SSDI is primarily data related. Mental health, we have the MSIP grant for three years and that was all infrastructure and all data related.
On many of the other grants, although there are figures, I can't say what portion or what percentage is associated directly with data collection.
I know that WIC has gotten a fair amount of money to get some systems in place, because they do have the monies right now to purchase hardware and software developed for the WIC program.
As I mentioned, the SSDI, the HIV/AIDS surveillance, which is specifically for data collection, our program, the national program of cancer registries is really directly related to that.
The CSAT, the CDC family of studies contract is really specifically data oriented, as well as our VSCP contract.
Now, in terms of the types of support provided by federal agencies for data collection, for the federal resources that we receive, various types of support are covered to include funds that are ear marked specifically for the hiring of staff.
With the NPCR grant, for example, we did get funding to hire someone to serve as the tumor registrar, once the registry is up and running.
We have funds that support technical assistance activities and funds for the purpose of equipment that will be utilized for data collection and related activities.
Level of federal support, I would say that based on the information, I would estimate that between two thirds and three quarters of all health and health related data collection activities, to include infrastructure building, through data analysis, synthesis and dissemination are funded through federal funds received by the territory.
The next question had to do with whether federal funds require specific program data collection or whether there is flexibility.
I think that, through discussions and input from various program managers, who have jurisdiction over federal funds, there were mixed perceptions.
For some programs the directors felt that they have a lot of leeway in terms of what information they may collect, which would include what is required by the grant or the contract, as well as other information that they may need.
However, there are instances -- I think one that was pointed out to me was in the family of studies that are in the contract that Amelia is working on through Johns Hopkins, that there was a situation where we were interested in adding certain items to the questionnaire. I think we were told that those questions were out of the scope of what the focus was for that particular project.
In terms of the use of health and health related data in the jurisdiction, one of the sub-items under that is, if we use the data to inform development of policy by decision makers.
You know, in a way this is a tough question to answer. On a programmatic level, it is possible that certain programs do use data to inform policy development.
However, I would say that this is not systemic for the department. When policies are developed, they probably sort of emerge.
I am not sure they are grounded in health and health related data. A good example of this is that currently we have no territorial health plan in place in the Virgin Islands.
The last comprehensive territorial health plan was completed in the 1980s. Since then we have had what is labeled as an interim health plan which took us through the end of 1993. But there is nothing in place now.
That I think is probably the most powerful statement as to the use of data for policy development.
The next question under this heading is, is improving data collection a priority for you. Well, it is for me.
You know, there are so many challenges and sometimes I think we think that in the department, we are still a department of health that is very much involved in the provision of care, as opposed to just the regulation of care. You don't have clinics, et cetera.
Sometimes I get the feeling that the perception is that this dispensing of care is a lot more important than the data.
I always want to say, but you are not getting it. I think we would do a much better job of prioritizing the care that we give, determining the impact or the effect of the care, making changes if, in fact, we had the data.
I am always on that sort of soap box, although hardly anyone pays attention to me. There are the political issues, and I think of the elements -- Richard Miller, he was one of our early speakers and he did talk about politics and how they come to play.
I have the sense that the smaller you are, the more politics looms. Hopefully we are moving in the direction of having everyone buy into the need for quality data.
Next question under this heading, with more funds, equipment, staff, would you be able to improve the data collection in your jurisdiction, to enable you to make policy and programmatic decisions.
The simple answer is yes. However, at a more fundamental level, I believe that a change or paradigm shift is needed, just in terms of the way we think about data and the importance of data, the importance of quality data, so that -- I mean, just having data isn't even enough. We need quality data.
So, funding, equipment and staff are just part of the equation that would yield a desired outcome of data driven decision making in the U.S. Virgin Islands.
Gaps in health and health related data that you feel most seriously affect your ability to understand needs and provide services for your population.
A fundamental gap, in my view, is the lack of a philosophy within the department of health, and probably the territory more broadly vis-a-vis the collection, management, analysis, synthesis, dissemination and utilization of health and health related data.
Additionally, as the department functions, we tend to be fragmented with the focus being on programs rather than on clients.
If we change that focus, I believe it would go a long way toward reducing many of the gaps that we have in our data at this time.
Additionally, we do not have a systematic centralized data collection system in place, and our computer system in place focuses on billing rather than on public health data collection per se.
We also lack consistent data on service utilization, program outcome and impact, to include both performance measures and outcome measures.
Many times our data are incomplete, late, and the fact that most data are stored manually creates many problems for the territory.
At this point we are not able, for example, to generate incidence and prevalence rates for various chronic diseases, and mortality data continue to be used as a proxy for morbidity data, or to help us get a sense of the health status.
We also have the problem of duplication of efforts. If someone goes to the clinic -- and you may go to three different clinics. It is the same department, but you register with each clinic every time that you go in.
I was really intrigued by the discussion on unique identifiers. It seems like for the last four years we have these meetings in the department of health where program directors come together thinking about and talking about the need to get it together, get a system where if someone comes to the clinic on the eastern end of St. Croix, there is also a clinic on the western end.
In our way of thinking, you should not have to register again or, if you are going to the mental health clinic and then you need to go over to MCH, you shouldn't need to register again.
We spend a lot of time discussing unique identifiers. Of course, all the issues of confidentiality, access to data, who is going to be able to see what, how can you get access to what you need.
So far, no one wants the social security number as the unique identifier and we are still struggling with that. We have not come to any type of -- I am not sure we are any closer now than we were when I first started at the department in 1991, and these discussions started.
These are just a few of the data gaps, I would say, that exist in the Virgin Islands at this time. I am sure there are many others.
Resources needed to reduce these data gaps. Some of the resources needed, I think, including infrastructure building in the form of hardware, software.
Telecommunications, I think we are very far behind, not only in terms of the hardware, but in telecommunications, a lot of issues that have come up so far in terms of assistance with really helping and identifying what we need to ask to actually get the information we want.
Sometimes we don't ask it right. Sometimes we ask the question but if three people interpret it differently then the data that we have are meaningless. We probably won't be able to make valid inferences.
So, identification of best sources of data, sometimes someone goes somewhere to get data. Maybe that is not actually the place to go and get the data.
Staffing is really a problem. We absolutely need staff that are adequately and appropriately trained, funding to do what we need to do in terms of not only hardware, but I think sometimes you get funding but this is like a one-time thing and then after that what are you going to do, because it needs to continue.
Right now, in the department of health, in my area which is bureau of health, research and statistics, I am the only person with any training in statistics, the only person with any training in research.
It is sort of an impossible situation, to put it pretty bluntly. So, we need help in the worst sort of ways.
Our data use to make specific program and service decisions. As I mentioned, the lack of a system for collection of morbidity data, in my view, really precludes meaningful use of health and health related data for program and service decisions.
However, specific programs sometimes get information -- you know, MCH, for example, with GPRA, I can't remember, someone mentioned - - Dr. Millman was mentioning some of the things that are coming down the pike and discussion about what these performance measures and outcome measures are going to look like.
A lot of the data that MCH is going to need really comes out of our office. So, they get information on, you know, low birth weight rates, so that is available to them. So, they would be able to use those data for those particular reasons.
I think one of the concerns that some other areas have, like the nursing, the director of nursing sat with me and one of her struggles is that she would like to know what impact some of the work the nurses are doing is having, and she has no way of knowing that.
So, it is like you are guessing what to do next, because you don't have the data.
A lot of the programs, when grant applications are due, of course, you know they are knocking on the door for some data. So, that is a use of data, when it is used in that way.
We do, from time to time, submit a request to be considered a health professional shortage area. At that time, you know, we make a lot of use of the data that we have, identifying physicians on staff, specialties, and then information from the vital statistics unit.
The next area -- I am going to move quickly here -- is information on capacity to design and collect population based or survey data.
Again, within the department of health itself, I would say that our capacity is very limited. Very few individuals have any formal training in questionnaire development, sample selection. So, that would be limited.
We do have, outside of the department, through the University of the Virgin Islands, there is the Eastern Caribbean Center, and they are involved with a lot of population based surveys and studies.
I work with one of the individuals there. We do the population estimates. They work -- and I believe that they will be working with Amelia and the other folks at Johns Hopkins in doing actual data collection on the family of studies project.
In a way we don't really have systematic population based surveys that we do routinely. A lot of like the NHANES and those types of surveys, we do not do those in the Virgin Islands.
We do the BRFSS. To the best of my knowledge, we do that every other year. CDC does provide the technical assistance to do the sample selection on that.
So, for that particular one, we do have that type of assistance.
Types of resources, I think they do get technical assistance. They get the sampling frame and all of that is 100 percent federally funded.
The BRFSS data are used by the Bureau of Health Education, the chronic disease program, to target different types of program, to identify different types of programs they are going to provide.
From time to time we get requests from the legislators for some of these data, and it is always exciting when someone wants some data.
Who has access to these data? This is a difficult question for me to answer because, with our data, no one really has access to the raw data.
Any tables, aggregate information that is generated, is available to anyone who requests it. I would say the same thing for the reports, the BRFSS reports. The raw data are probably not accessible -- well, accessible on a limited basis. I do have those data.
The gentleman from HCFA talked about the PROs. We do have one of those in the Virgin Islands. This year, on the BRFSS survey they have a module that they have added because they are doing some projects on diabetes. I believe they added a module on that. So, they will have access to those data also.
The quality of data, generally speaking, I think that -- I have some other notes here about quality of data -- in general is that sometimes the culture in the Virgin Islands is not very receptive to questionnaires and telephone surveys and those types of things.
One of the things you find with the BRFSS survey is there will be times when sort of like in the middle of an interview the person says, I don't want to answer any more questions. This is going too long. They just sort of terminate the interview.
That is probably one of the biggest problems that we have with the BRFSS data. Sometimes you have incomplete information.
On encounter forms, which is generally what we have in the public health clinics, all the information sometimes isn't there.
Someone may miss some demographic information. Especially if you are interested in looking at the different age groups of individuals who come to the clinics, missing data is a really big problem for us in the Virgin Islands.
I am not sure why that is. I suspect that, in part, it is because the people who are collecting and reporting the data don't really have an appreciation for the importance of the accuracy and the completeness of the data.
I am going to move on to types of population based data collection. Census data, yes, we do. The frequency? After the 1990 census we did do a 1995 population and housing survey.
I believe we are in the midst of trying to do -- is it the CPI survey? It is one about price index, consumer price index. I think that is the other one that we are doing.
We do these as often as we can get some money from the Census Bureau and technical assistance.
Types of health data that are collected to measure health status. Doctor visits, hospital visits. Again, these data are not systematically collected by the department of health, nor are they systematically reported to the department of health.
Information on disability, health insurance would not be collected as population based data. When individuals come to the clinics, I believe on all the encounter forms there is some information about the payer, whether it is self pay, whether there is insurance, et cetera.
We do not systematically collect these data and we would not be able to provide either population estimates or actually population information on these.
On the census information, census data, we do have information on poverty level, income, level of education, housing, that we would have pretty much the same types of information on the census in the Virgin Islands that would be collected on the mainland.
I am going to move quickly to our capacity to collect vital statistics. How are births and deaths recorded and reported.
By law, in the Virgin Islands, hospitals are required to report births occurring in the facility. As there are only two hospitals and one public health clinic in the Virgin Islands where women give birth, it is believe that at least 99 percent of all births are reported to the vital statistics offices in the territory.
There are some births that occur outside of the medical facilities, and these are thought, for the most part, to be reported within six months of the occurrence of the birth.
There are rare instances, however, when a birth is reported later than this. Problems with late registration of home births have substantially decreased within the last four years.
With respect to death registration, it is believed that 100 percent of deaths that occur in the territory are registered, since by law it is necessary to obtain a burial permit prior to final disposition of the body.
Fetal deaths are also reportable by law for fetuses 20 weeks and over.
Vital events are recorded by the vital statistics unit within the Bureau of Health Research and Statistics of the Department of Health.
This responsibility is a legal one. If anyone is interested, I have a copy of our vital statistics law here.
All vital events that occur in the U.S. Virgin Islands are recorded and stored on paper records. Additionally, vital events which occurred since 1982 are stored electronically on diskettes.
We also have several years of vital events that have been microfilmed and are kept at the public library.
Actual vital records are accessible only to staff working in the Bureau of Health Research and Statistics. Information related to births are available only to persons with a legitimate claim to obtain a birth certificate, which would include parents if the child is under 18, and those wanting a copy of their own birth certificates. We don't allow adults to apply for birth certificates of other adults.
Federal agencies and local governmental agencies that have legitimate requests can obtain information concerning births or deaths, but do not have access to the actual records.
Quality of our vital events data. In terms of the completeness of the initial information received from the hospitals and funeral directors for births and deaths respectively, there are at times problems with missing information.
Lack of completeness with respect to data items is the primary issue with the quality of vital events data. Less frequently there are problems with incorrect reporting of certain demographic variables.
To address the problem of incomplete records, staff of the vital statistics units attempt to obtain missing data elements from the primary reporting sources, typically the hospitals and funeral directors.
One of the aspects of the death record that bears mentioning at this time is the cause of death section.
Because of various issues that have emerged over the years with this section of the death certificate, meetings were scheduled. One was successfully conducted.
Actually, with the facilitation of our PRO in the Virgin Islands we discussed with physicians the importance of providing as much information as possible in the cause of death section.
That is one of the areas where we could improve in the quality of the vital statistics.
There is a question on how might vital statistics quality and completeness be improved. I think one of the things that we have really been trying to do is get the hospitals, particularly, to be more sensitive to the need for complete data on the birth and death certificates.
Once in a while we have to mention to them that they are legally responsible to do that.
Authority to require reporting, again, is in our law and it requires that all births and deaths in the territory be reported to the Department of Health.
DR. IEZZONI: Dr. Michael, I think we are going to ask you if you can make some final comments right now. A lot of the material that you might have left, perhaps we could get in discussion tomorrow.
DR. MICHAEL: Okay, I wanted to see if I can just find the two pages I wanted to -- I did want to touch on the item related to federal assistance needed.
One of the things that I would like some assistance with, I think, for the Virgin Islands is some way of working through with us to really help us with a change in the perception or our view of the importance of data, trying to help us move to the development of some type of -- what is the word I am looking for -- you know, I am thinking of that book, In Search of Excellence, by Peters and Waterman.
One of the things that they talked about with a lot of the companies is that they had this culture of excellence.
That is sort of what I really think we could use some help in this, is just trying to develop a culture related to making the collection and the use of health and health related data integral to the whole functioning of the department.
It is not something that is additional, but it is like a core function of the department.
I would like also some help in steering us in the direction of actually establishing a center for health statistics within the department of health.
I think it is critical that there is some level of centralization, because that will make a lot of difference, I think, in the quality of the data.
If there are six different sets of individuals collecting the data and manipulating the data and working with it, there are six things going on, six sets of standards.
As we talk about standard data sets, I think that in the same way we need to look toward getting some standardization in the whole data collection process.
Obviously, we need help with money, training, technical assistance, staffing.
DR. IEZZONI: Thank you, Dr. Michael. I have been caucusing with my colleagues up here. We have been looking at the clock a little bit and wanting to hear everybody's comments and have time for questions.
I think what the consensus is at the head of the table is we would like to let people use as much time as they think they need for their presentations, so that we can hear about activities.
So, we might push some of the presentations to first thing tomorrow morning, if that would be okay. I know that Mr. Santos has flown for three state days. You might actually welcome, if you are the one that gets pushed over.
My point is going to be, why don't we take a 15-minute break right now and we will reconvene. We will do as many of the presentations as we can and then we will have the remainder of the presentations tomorrow morning.
[Brief recess.]
DR. IEZZONI: It is now 3:35 and I promise I will try to get you out of here by 5:00. If people could take their seats, please? We are going to reconvene.
What we would like to do is try to have the remainder of the presentations focus, if you can, a little bit on how we can help you, thinking about recommendations and areas where you have needs.
We actually should let you know that we got fairly extensive briefing materials about the various countries and territories that we have read.
If there are any materials that you would like us to have in addition to that, you can give it to Barbara, and she can photocopy materials that can be handed out to us.
If that is agreeable, does that seem like an okay way to proceed for the remaining presentations, focusing on areas where we need your help?
Okay, Mr. Uele, do you want to take off on American Samoa?
MR. UELE: I will make a short overview of American Samoa, the health information system and data collection.
I was thinking of let's put yourself, let's say you are in American Samoa right now in this room. I am walking inside here trying to collect data from you.
I would be coming in on my knees and probably sit down instead of sitting on the chairs. That is how hard the data collection and health information is right now on American Samoa.
I am very pleased for this opportunity to come here and join with such an auspicious group, to talk about a topic of clear importance to the Pacific, as it is elsewhere in the world.
I hope to provide for you in this meeting some background information on the status of health information systems in American Samoa.
We learned that, whatever information system we are using, there are problems involved. In American Samoa, it is not different.
Therefore, I will give you a concept of some of the problems that we face, and to update you on the status of things in American Samoa at present, with some recommendations and indication of where we are headed but, most importantly, to try to respond to some questions on health data needs and issues on a health information system in American Samoa.
After working over 20 years in the department of health in American Samoa, I tell you we have the best, knowledgeable experienced individuals who are involved in the health information system, data collection. Some of them have been there for over 30 years.
The problem is these same individuals do not want to cooperate. When it comes to data sharing, each one wants to do their own thing.
Getting health data is like how to approach a dog to release a bone.
Seven islands comprise the territory of American Samoa under the United States flag since 1900. It is a group of islands isolated from the nearest United States flag, Hawaii, by some 2,300 miles of ocean.
American Samoa functions quite similarly to the United States, an elected governor, bicameral legislature, a court system, et cetera, familiar United States entities.
The population has almost doubled since the 1980 U.S. Census. Total estimated mid-year population 1996, July, is 58,070 people.
It is a very young population with nearly half the population under age 19, with an annual growth rate of three percent.
The current status of the health information system or the health department in American Samoa. The hospital, LBJ Medical Center, has now formally separated from the department of health, so that inpatient and clinical care will now financially and administratively separate from the department of public health.
Public health functions, including health information as well as services provided by outlying clinics will continue to be managed by the department of health.
Several areas of shared services will remain, such as internatal clinic, certain laboratory functions and, to some extent, medical records, as well as the need for considerable sharing of health information.
A memorandum of understanding is in place, but details and collaboration in general terms only, without specific details.
These details are still needed to clarify roles and responsibilities.
I have a handout. I think everyone should have this one. I am talking about a fragmented information system.
Each one of those people are health information administrators, and I am in HI, which means health information system, and I am one of them.
If you look at the next page, those are the codes for forms, numbers on the previous page. You see why things are very difficult over there in American Samoa.
Some forms are flowing four different places, just to give you an idea of how much help that we need.
The other information system remains fragmented as indicated and described by the WHO consultants and others during their previous visits to the department of health.
This was produced last month in discussions with the WHO representative. We didn't know we had this all these years until we all sat around like this and said, who do you report to, what form do you use, and we came out with this. That is a problem. We have to think of a way to solve it.
Personally, some of the most frequent problems are related to insufficient cooperation and data sharing, inadequate communication among staff, insufficient training among staff, and problems with duplicative or unnecessary data collection.
Also, HIS is still fragmented. Major players of the HIS have tried to develop an overall health information system picture and explored options to overcome several identified constraints.
I believe the purpose of health data collection is to stimulate action for improved health. Its purpose is not to keep health workers busy, nor to create file cabinets full of papers and numbers.
Unused data is, for the most part, unnecessary data. Unfortunately, very often the response of managers is to change or even to increase the collection and the reporting requirements, rather than to focus on the processing, analysis and use of the information that is being collected.
The system and the workers become overloaded with the data collection.
Type and sources of data. Data collection is the first step in the function of an information system. Typically, too little attention is given to selection of data items for collection, and the system attempts to collect everything that everyone thinks is interesting.
Data overload results with the risk of drowning in data, while information and actions remain in short supply.
Currently, the department of health is organized and managed under -- I will just hop over to give you some idea of how the department of health is related to the health information system to the data collection to the governor and so forth. I am glad I am very far away now. I can say anything I want to.
DR. IEZZONI: You are on the internet.
MR. UELE: I am sorry. Recently, discussions to establish realistic and relevant records and reports as the basis for a health information system integrated with the clinical services was apparent.
A system of logs, records and reports available from or holding the potential for very useful data for the department is a largely unexploited resource.
I will give you some recommendations here as our chairperson sent us.
Current discussions on the health information system and RPMS are underway. This is one of the highest priorities of RPMS. This is the Indian Health Service system, should be adopted initially, not MUMPS.
This should follow wide consultation and adaptation to meet local needs. The system should be implemented incrementally, ensuring local capacity and satisfactory output before expanding.
A procedural manual for the HISRO, an information system office, should be developed.
For the most part, some recommendations were presented to the department of health, to obtain is view as to their utility to him as a manager.
There are some new recommendations, however, based on analysis of records, formats and report forms from previous studies, meetings, discussions, workshops, et cetera.
Hopefully, some of these recommendations also will have utility to the department within the present structure, policies and constraints.
I am going to mention, as I said before, a few recommendations, and then I stop.
A policy document should be developed by the office of the director identifying the departmental units with organizational responsibility for health information systems.
This document should indicate that new system developments to be undertaken will be of centralized medical data base on functional equipment to capture both hospital and department of health data.
The equipment proposed was an IBM 600 model, running Unix, MUMPS and RPMS software for centralized medical data; billing, inventory and other software as it becomes available through the Indian Health Service.
Finally, there is a need to establish a formal agreement related to health information access between the now separated hospital and the department of health, and to establish and empower a health information authority, a cooperative health information committee to oversee all aspects of the system and to develop written procedures.
The planned adoption of a comprehensive software system, from the United States Indian Health Service will require local adoption, consolidation among CNSTAT and selected and incremental implementation.
That is just some of the things that I would present before you. I forgot one thing that, thinking about the health information system and the data collection, we are talking about people, computers, money, pencils, a tape recorder, anything, cars. It is not easy.
So, I hope that this meeting will not only help our area in American Samoa, but elsewhere in our United States and other territories. Thank you very much.
DR. IEZZONI: Thank you, Mr. Uele. Can I just ask, why are these people tenaciously like a dog with a bone. Is that you are invading privacy is you want other data?
MR. UELE: It was an issue before the separation. Now it is getting harder, I guess, since they are moving away from the department of health.
They think they are going to have their own health information system, the medical records people.
DR. IEZZONI: Is it just people being people and wanting to control --
MR. UELE: These are real people. I am acting as a PR person sometimes to please them, because these people don't cooperate. So, they look for somebody to go there and beg them to release the data. So, that is the problem we are facing right now and that is why each program has their own data person.
Then, when they are out of people, they send people to me. So, this is a real, true problem we do have in American Samoa. I am telling you, it is happening.
I think one of the problems is coming from the top. Some people think that data is not important to their job. So, they have to have some decisions and recommendations.
Before I finish, there is a very classic example. Last year Mr. Sondik sent a letter to the director of health there, to provide the NCHS with the records of vital records.
It was sitting out there for six months. Mr. Sondik sent another letter to the governor. Then the governor finally informed me, make sure you provide this information right away. That is when things started moving.
That is what I am saying; it has to start from the top. Some people, they won't move unless somebody makes some noises.
I am very happy that that was complimented, the work, Mary Anne Freedman and the group over here, for doing that. I hope you will continue that in the future.
MR. HANDLER: I was going to mention the RPMS system tomorrow, the Indian Health Service's automated patient medical system. I had no idea that American Samoa was involved with it.
DR. IEZZONI: Mr. Handler, actually, could we hold off until tomorrow a more lengthy discussion of that? I think that is a potential recommendation for certain entities. So, we would want to hear a little bit more about it.
Do the committee members or people around the table have any comments about American Samoa? It sounds daunting, actually.
How do you change people from being human? That is the problem that we seem to be confronting here.
DR. KOO: I have one quick question. It was interesting, the comment that you made about Dr. Sondik sending a letter to your governor.
I was wondering if we should try that, too, with regard to notifiable disease data. We have not heard from American Samoa in two years.
DR. IEZZONI: It would come to Mr. Uele, to your desk anyway.
MS. FREEDMAN: I believe that what happened there is that we would have been in contact with your liaison person in Congress to say, what is the best way to communicate with American Samoa. It was done through the Congressional office.
DR. IEZZONI: Okay, thank you. Any other comments or questions around the table about this?
All right, Mr. Camacho, please, about Guam.
MR. CAMACHO: Thank you. I would like to preface my comments, remarks, by saying that data collection on Guam is alive and well. Everybody is doing a lot of it.
Most of the health data that we collect are primarily based on a lot of the federal program requirements for funding that we receive from the Federal Government, and that is for specific programs.
We also do collect information, vital statistics information. Just recently a law was passed on Guam. We established the cancer registry within the department of public health and social services, from the hospital.
We thought that would probably be a better way for us to access the information. Also, since we do have an epidemiologist on staff, appropriate analysis can be undertaken with regard to the information, especially since cancer is one of the leading causes of death on Guam.
We also -- I am pleased to report that we do have a diabetes registry that we have just recently established.
Also, because Guam has a high incidence of ALS and PD, we do have groups on Guam that work with these patients in conjunction with the Mayo Clinic, and I am sure they are collecting data as well, on that specific population group.
Health information systems that Guam has, besides being varied, a good way to describe it would be fragmented.
Within my division, within the department itself, we have up to 10 different systems operating in terms of how we collect the data. A lot of it is based on specific program requirements from federal grants that we receive.
I think that leads to one of the recommendations that I will share with you at the end.
The data is used in developing, at least within the Department of Health and Human Services, in looking at the services that we do need to provide.
That information is presented to our legislators, because they do have the authority to approve our budgets. So, that information is presented to them.
As far as managed care, Guam is, and has been actually, looking at managed care, especially with regard to Medicare and our Medicaid population.
There was a bill that was introduced in the last legislature, and that didn't go very far. It has been resurrected with a new approach, and that is to take monies that the government puts aside for the Medicaid and MIP programs -- medically indigent programs - - and add that to the pool of insurance money that the government uses to insure government employees as well as those other targeted populations.
That is going through several reviews and actually revisions in the bill that was submitted. The senator in charge of that committee, Senator Dr. Eduardo Cruz, has promised that he will have more community meetings to review that and to try to fine tune that.
There are interesting ways to look at how that bill will actually end up.
Gaps in health and health related data, I think probably because it is so fragmented, there is not an ease of communication.
As far as getting information from other agencies that collect it or other sections or programs within the department of public health, we can get the information, but there is always that time constraint where, I can't get it right away because people involved are program people and they are actually out there providing services and taking care of other needs.
So, that request for information gets less of a priority attention.
With regard to the information that is collected by other health agencies, again, it is the same problem. I think if we look at some mechanism to standardize the information sharing, not necessarily centralizing it, because like American Samoa, I am not sure everyone is willing to give up their little domains as far as holding the information.
They say that information is power. So, you can take that to the bank.
I think integration of the information systems that exist would definitely help Guam, especially in terms of analyzing the information that is available and planning for services as a whole community as opposed to departments in isolation providing specific services to the people that they do serve.
I would like to -- Ms. Benner from Puerto Rico made a statement earlier about the disparity that not only the territories but the other jurisdictions get, in terms of federal funds.
I think there was a meeting earlier this year that was sponsored by HRSA. At that meeting, Dr. Fox indicated that President Clinton wanted to eliminate all the barriers to the access to health and health care.
I think that with some of the limitations that are put on the territories and the other jurisdictions by formula fundings or by other types of considerations, you are not going to be able to eliminate those barriers.
Discrimination against other Americans? Yes, it does exist, and it will continue to exist unless some method is implemented to be able to alleviate some of those restrictions on the territories.
We recognize that we obviously don't have the population base, perhaps, to compete with California or some of the other states. That we understand.
I think in terms of, if you are looking at needs, then if Guam, let's say, has a low incidence of HIV and AIDS, then would it not be the most appropriate action to look at providing more infrastructure to keep that prevalence low?
I think if those kinds of considerations this subcommittee can bring forth as recommendations to the powers that be, then I think you will see some of those disparities start to go away. That is pretty much it for now. Thank you.
DR. IEZZONI: Very thoughtful comments. Quick questions? We will be back tomorrow when we discuss these recommendations. None of you are escaping easily tomorrow, because we really need your help in thinking this through. Okay, Ms. Sablan?
MS. SABLAN: Thank you all, first of all, for inviting me here, too. I am glad that Guam went first, before CNMI, because a lot of you know Guam, and we are about 20 minutes away from Guam on an airplane. It is about 500 miles, really.
The CNMI is composed of three major islands. Saipan is the capital and then we have the other two islands, Roda and Tinian. Then we have the 14 other islands north of Saipan, which four of them are inhabited and the rest are not. They are volcanic islands ready to erupt, probably any time.
With that in mind, if you picture that, it is probably like Hawaii, where it has a lot of other islands connected like a chain.
With Saipan being -- what do we say, like the center also for all the data collection that goes into a place and whatever the happening is, it is really fascination because since 1990, the population of Saipan has like almost doubled, really.
With an island that is 50 miles long and seven miles wide, we have a population of close to 60,000 now. Being like 25 percent of the population is of indigenous -- it means that you are born in the CNMI and the rest is you are born outside the CNMI and migrated into the Commonwealth of the Northern Mariana Islands.
Would you imagine picturing that to what does it affect, doesn't affect, on our health structure as well.
Yes, we do have traffic lights now. We have more better roads, but then the health problems continue because the population increases.
However, with all these things set aside, I am also happy to say that although these things are happening, the department of public health -- the department of public health is three divisions, which consists of the hospital, public health and mental health.
Fortunately, we are in one area, which is public health and hospital, while mental health is on the other side -- it is not very far from the hospital but it is located in a different location.
With me being designated about a year and a half ago to manage the health planning and statistics office and with a staff of about two, can you imagine how would the impact of me and my staff have, with all this data that we are supposed to be collecting and analyzing and finally disseminating it to the proper agencies or departments or what have you.
With vital statistics, I have developed, and also implemented, the U.S. standard forms. When I came in place, we had the forms since trust territory times.
A lot of this data that is needed for the Healthy People 2000 objectives is not even on that form. So, I had to go ahead and start implementing that so that we can compare our data with the rest of the Pacific jurisdictions. That was one accomplishment that I did.
When I went in there, again, everything was like tallying, counting, straight from the certificates. You can pull your ear this way and this way and you can try to put it together.
Even though we have births like 1,500 a year, but if you put those things together for a year, going through every one of them is time consuming. Sometimes you have to cry, really.
So, I said, I am going to have to stop all of this. Whatever I can do now. So, with the help Guam staff -- of Gil who is also a computer specialist and he is well versed in the IMS program, I was able to talk to my secretary into like hiring him on the island for two weeks, just to do an on-island technical assistance for the IMS program.
Then we developed the birth and death registry, a list for that section. We have input our 1996 to 1998 data in there, and the 1990 to 1995 that I was thinking it is probably in this old dinosaur, lying around hard drive.
I guess it was in D Base, when nobody knows what D Base 4 is about. They just input, input, input, and there is no output.
I tried to take that up to -- we have a central statistics office for the government. I asked the person there to try to restore as much data as they can.
It turned out they said, no. I think this dinosaur doesn't want to wake up. Finally, I was happy that before they send our certificates down to the warehouse, I was able to grab this five years of certificates.
I have them started inputting that into IMS now. So, once they are done -- and I think they will be done by this week. So, when I get home, they will probably just refine and check the errors or whatever, duplications. Then they will load it into the system that we have.
Then we can have data dating back to 1990 at least. Our certificates, the original ones, are not filed at the public health.
It is down at the recorders office, in the clerk of courts. The ones we have there are just carbon copies of the original birth certificates or death certificates.
Our cancer registry is not as sophisticated as Guam. We have had the MUMPS system. Since 1992, it was installed by Nancy Williams, who was the public health service -- what do they call her -- it is supposed to be like an Indian Health Service program.
It is very funny. I was telling my colleagues that I was sent to Hawaii in 1992 to learn IMS. On my way back home on the plane, just on the plane, I overheard someone saying, oh, they are going to put MUMPS in Saipan.
I was thinking, what are they talking about, MUMPS. I was thinking about the mumps, you know. I just couldn't avoid that.
I had to ask the person, excuse me -- she was the lady who was supposed to install the MUMPS. I said, what did you say?
She said, oh, you work for the department of public health? I said, yes. She said, I am going to install the MUMPS system. It is supposed to be like a main frame computerized system.
I said, well, what about IMS? She doesn't know IMS and I don't know MUMPS. Anyway, when I reach home I told my administrator. So, what happened now to IMS?
He said, forget it. You went to Hawaii. You saw Hawaii for a month. That is it.
So, from there on, it is like really, you know -- I just didn't put that -- I remember I said, when I came in, when I was assigned to this new office, I made use of the IMS program now because that is our birth and death registry.
As for MUMPS, that is the system that is hooked up to the hospital and all the public health areas, clinics and pharmacy, laboratory, all the hospital units.
Unfortunately, with MUMPS, I hate to say this, because Fale is planning to purchase it probably, but the MUMPS system, when it was negotiated, public health was never included in this negotiation.
I guess when they first got it -- it was supposed to be free really, but then you purchase the rest of the parts. I am not so sure.
It was really like a hospital based system. Here we are, public health, which we have to retrieve a lot of the data so that we can fulfill the requirements for the federal reporting, MCH, preventive health, you know, diabetes program and all these other things.
It is not spitting out exactly what we want to ask it because of the way it is written. I just found that out three days before I came.
There was a guy who is an instructor at the Northern Marianas College who said, the MUMPS is supposed to be a very reliable good system that you can go in there and write small programs that will help you put out what you need.
Since the system was installed in the hospital, and the person that is being paid by the hospital account is managing the system, he hasn't really cooperated with public health.
That is another obstacle on our part. Even though I really wanted to produce or collect or whatever to do with data, it is hampering me from really reaching where I am supposed to reach because of that, what do you call that, turf, like this is my jurisdiction, that is your jurisdiction, if you don't like what we have, purchase your own, something like that. That is the attitude; that is true.
In terms of public health itself, yes, we do have other systems in place where, you know, like the NCH uses some kind of a system now for tracking children with special health care needs.
They have that, but they give me older data to analyze it and then, when the block grant comes through, put it to whoever they have to report it to.
I still have to report hospital data as well, number of patient visits, number of deaths, number of hospital stays, you know, all of this.
I still need the MUMPS in a way because my office is supposed to be like the main center for all statistics to be collected and as well to be used for policy and decision making for health planning.
Unfortunately, that is not what -- it has turned a little bit the other way. I hope that with this meeting, you guys can really look into that and maybe make recommendations of how I would present this to my Secretary of Health.
I am not like Fale. I am not even going to go to the governor. I will just go to the Secretary of Health, and I know probably he would do this. This is real important.
We are not going backward. We can't go back to primitive times. We have to go forward. The only way is to really share and give what you have to give rather than trying to hold onto something that you want to hold on, but you cannot do anything about it.
So, you have to give it to the person who can do something about it and make use for everybody. That is my presentation.
DR. IEZZONI: Thank you. We knew what you were experiencing. I think we all understand quite well. We will have to think about that tomorrow, how we can articulate some recommendations around those issues.
Mr. Ngwal?
MR. NGWAL: Thank you. I want to thank the committee for the opportunity to be here today. I would like to start off by saying I listened to my colleagues here and I guess Palau is no different than most of what I have heard.
Most of the problems that I hear that everybody is encountering is basically system based, manpower, training and technical assistance of some sort.
That is very much, indeed, what we need in Palau in terms of data gathering and analysis. In fact, in Palau, one of the critical areas that we need help on right now is health planning.
We need a health planner. We need epidemiology assistance there. We need a good computer system and also we need training and technical assistance for mental health and substance abuse, things like that.
Like everybody else, we have very fragmented computer systems in Palau. We have three different areas that gather data.
At times when we need information, it is tedious and difficult to get all this different information from different systems together which, at the same time, also jeopardized the integrity of the data that we are trying to put together.
What we need is a good system, a network system, where maybe not one system, but what Mr. Camacho was talking about, a sharing system, where we can extract different information from all of these data bases that exist, and be able to use them to produce the reports that we need to produce to make use of data.
A lot of data is being gathered, but some of them are not being utilized. I would say that probably a lot of it is not being utilized.
They are just gathered and they sit there and people do not know what to do with them. In our case, we don't have a health planner.
So, a lot of these data are not being utilized to the best of what they could be used for, in terms of managing health care delivery and things like that, for the population.
So, we share all of these same problems for these islands. So, hopefully something out of this whole gathering can address those issues, particularly the systems problems.
The system is a big issue for us, for everybody, because it is technical and because of the infrastructures that we have on those islands.
It is not something that can happen overnight for us. We have to look at a lot of different infrastructures before we can put good systems together that benefit everybody. I think it is a big issue for us and we certainly need help in those areas.
Also, manpower and training, manpower in terms of specialized fields. We need an epidemiologist right now, to conduct studies and also help us in areas where we need help to gather data, to make use of data.
We gather the basic data that everybody has, like the birth rate, the death rate, hospital in-patient, out-patients, the public health outreach programs, RPRO programs, billing and collections and information.
Some of this data is sitting in different systems and different places and not being utilized correctly. So, with appropriate help, if we can't get appropriate help to get all of these systems networked and share all of this information, much of this data gathering and utilization of data is not going to help anybody.
The data is going to be gathered. I would imagine most of the data being gathered are going to be reported to satisfy the federal program spending situations.
Besides that, they are going to sit there not being utilized to benefit the populations where they came from, whether for legislative purposes to make rules and laws and whatever to help the population or even just to manage the health care and the delivery of the health care.
Without this proper infrastructure in place like systems and personnel and training and things like that, much of the data that you will see for people who are here is probably just the reporting of a certain something to satisfy the requirements that you are looking for.
Most of it is going to be out there and you are not going to be able to see, and you are not going to know what they are being used for.
So, you think things are happening and all is good and well because they are being reported to you, answering your questions. Beyond that, there is nothing that it is going to be used for.
I think everybody pretty much addressed the same issues, which is my concern as well. Hopefully we can get something out of this committee to help everybody out. Thank you.
DR. IEZZONI: Thank you. I apologize, Ms. Sablan, I forgot to ask if anyone had questions about your presentation or Mr. Ngwal's presentation. Both of them, are there any questions from the committee?
MR. HANDLER: My questions is more like a clarification. The MUMPS system is the patient care reporting system developed originally by the Veterans Administration.
The Indian Health Service bought into that after the Veterans Administration perfected it. Then what we did is, we developed on our own a different system which we call the resource patient management system, the RPMS. The man from American Samoa mentioned that. We don't use MUMPS now. We used to at one time.
DR. ISER: I would like to go back a couple of years, not for a long period of time, but just to tell you that we in the department had promised the Pacific Island jurisdictions that we would simplify our reporting requirements.
I wouldn't say that it has been a plea, but I would plea that we get together to make sure that what we need to know is important and applicable, so that Nick doesn't have to put in a separate report with the same data in CDC format and HRSA format and OPA format.
If we cannot do that for them, we can never ask them to help give us legitimate data that either they or we can use.
Fragmented is a term I have heard used. We need to do our job better. Dr. Bufort promised that, and she is now gone, but we should be able to sit down and help them do that, in cooperation with the South Pacific Commission and the World Health Organization.
DR. IEZZONI: Maybe the data council can help with some of that.
MR. NGWAL: We heard a reference earlier today about CDC, HRSA data investment strategy. That is, I think, going to be at least the starting template for that.
The states will be able to look at the resources they are putting into it and try to begin to rationalize it. Then, of course, that will apply to the territories as well.
DR. IEZZONI: No, but that plea is coming through, the fragmentation of the data required by the different block grants and categorical programs, and that the data also benefit the populations about whom they are collected.
DR. ISER: We should take a lead from the South Pacific Commission and RPRO in the Pacific jurisdictions, rather than be the lead in that. That is my recommendation as well.
DR. IEZZONI: What I am hoping is that tomorrow, that some of the federal agency representatives, hopefully you will be here, and you can participate in a dialogue with the representatives from the territories and independent nations to help them hear from you what you might recommend, and see if we can go back and forth and really hone some recommendations.
I don't want us to produce a document that is going to be so infeasible that it is going to sit on a shelf and gather dust. We have to have some reality in the basis of our document.
Before we go to our next presentation, I want to take just a quick break. This will take just a few minutes, something we want to pass around the table. Hortensia, our social engineer here, has a comment she wants to make.
DR. AMARO: Actually, both Richard Harding and I have talked about this. I think we talked about this at the last committee meeting.
We were not able to arrange for a more formal dinner or get together, but we thought that maybe, in lieu of that, those of you who want to get together for dinner, we might just have dinner together.
I was going to suggest that we meet at 7:00 o'clock at the hotel lobby where most of us are staying, the State Plaza Hotel lobby. I will send a sheet around and, depending on how many people sign up, I will make reservations.
[Other dinner arrangements discussed.]
DR. IEZZONI: Thank you. Mr. Elymore, you are going to tell us about the Federated States of Micronesia.
MR. ELYMORE: Thank you very much, Madam Chair. I am very happy to be here.
Type of data. I think the type of data collected in the FSM, it is probably similar to everywhere. It starts with the flow of patients and into the system, and also when events take place, like births and deaths.
Health information is based on the source. We have notifiable disease, hospital inpatient records, births and deaths, hospital outpatient, public health records and reports, and dispensary and outpost.
In the FSM we have 107 dispensary and outposts and we have four hospitals. Births in the hospitals are over 90 percent reported. Deaths, they are all reported at the hospital.
In the outlying communities we have, according to the 1994 census in FSM, which was supported by the United States Department of Commerce, Bureau of Census, in Hawaii, we are covering birth registration 81 percent, and death is about 50 percent. That is the coverage as far as births and deaths.
Morbidity, in the hospital inpatient, morbidity is collected based on the doctors. Whatever the doctors determine is the principal cause of admission and discharge and other episodes of care, they are also recorded.
All this information in the hospitals is computerized. Vital statistics like births and deaths, births has also been computerized. So has death.
With the support of OIA, I think we are really happy with Richard Miller for his support. We were able to put all of our birth information on IMPS.
IMPS is a very powerful program which standardized all of our information. It standardized the input and also the output.
Deaths are still on D Base 3-plus, and whatever we received as been computerized and it should be able to be provided to anybody.
How is this information used? We hope this information is for planning and, of course, for the administration of our hospitals and facilities.
Unfortunately, the health information system is not really in use. In the FSM, the infrastructure is not that well developed.
Public health programs for the FSM is separated from the hospital. So, the public health programs is composed of all the federal and preventive health programs.
So, information like on maternal child, family planning and all those programs are reported at the public health.
There are some based on the births, and they just come and collect them and go to the other side. The communication and coordination is really poor. So, the capacity to collect, that is the situation.
The system itself, I believe, is probably the best system we have, but the coordination is not too good.
Currently, for the past two years, FSM is in a process of reforming all these information systems. What we do now is, first of all, we are trying to re-evaluate our notifiable diseases list, and we launched a program called health information and public health surveillance system.
It is just -- it is no different from what we have, but it is just to augment it or strengthen the reporting of the very vital, important disease and health indicators.
So, in doing so, the last two years we have been trying to institutionalize the decision on what is important as far as disease and health indicators is concerned.
In doing so, we are using a methodology which probably is old CDC and Canada methodology. We adopted that. It is based on 16 criteria, which include the cause and communicability and all of that, as the health indicators.
Now, you probably haven't received any notifiable disease from FSM for the past few years. The reason is because there is no use to report something that is incomplete.
Unless those very important ones, like if you have measles, you should be able to get it. Because we are in the process of reorganizing and reforming our list and prioritizing them, we are at the stage right now, each state hospital or department has come up with a committee that we call public health surveillance committee, composed of different program people and division chiefs.
What they do, they use methodology for ranking the disease - - very important -- surveillance, and also the health indicators.
So, all the states in FSM have completed that stage. So, the next stage is, we are going to look into who is responsible for what and the flow and all that, and put in a manual of procedures so everybody will know who is responsible for what.
It has been a problem that we keep on appointing somebody but we really don't have any base or framework.
Another thing with the computation of morbidity, with the use of Impass, Impass is a microcomputer patient administration we bought from the Australian government. It only cost $4,000 Australian. It is like the main frame and the MUMPS and it really works.
All the ICD is inside and also it gives you a correction if you have the wrong code. So, I think standardization with the Impass, it is already there in the hospital.
Standardization with IMPS is already there. With the births, we revised it in 1994 to meet MCH requirements.
So, it is a matter of recording. So, our caps in the birth record administration, besides the outlying communities -- as you know, FSM has a lot of islands scattered a couple of thousand miles away.
Besides that, within the public health program, like the prenatal and the delivery, there is a PCAP. The public health, they are supposed to take care of mother when they are pregnant.
As they go through the delivery, we should know how many we lost. So, that is a cap. So, we are working on that.
Also, we are also tracking from the births to the preschool and all the school children.
So, also standardization is one major thing that we are trying to do in FSM, standardization of data entry, outputs and also the definitions of terms and diseases.
With the help of WHO, we have given this list, and also CDC has provided diseases list, so we can use and put in all the manuals for doctors to agree and do the same thing.
How can the NCVHS assist FSM? I think FSM needs a lot of help, a lot of doses of help. The help, it may not be that expensive. It is probably peanuts. I think $50,000 will help all of this.
Our problem is the medical and vital statistics part, which I am directly assisting. It is really isolated from the federally funded programs.
So, we have to see how we can work together. Our problem is like manpower, we can hardly even call it a committee.
Public education and community understanding of the importance of registration is vitally important. Also, our doctors really need to be aware of the ICD-10 or ICD-9.
I think it is terribly important for the region to have this in mind, the standardization and agreeing on definitions on all of these.
I always talk about ICD-9 or ICD-10. No matter what system you have, you still have the same thing. So, in FSM I think with the other Pacific islands, we are also a member of the Pacnet, as Dr. Koo was mentioning.
Pacnet arises from the complaints from the Pacific island countries. It is from receiving so many different kinds of information at different categories, age groups -- there is no coordination among the agencies.
The more we receive more data needs, the more we don't do it. We are so confused with so many things that we just become unable to provide whatever may be needed.
So, there is that coordination among CDC and especially WHO, UNICEF and SBC, and they invited CDC and I am sure they have been working together.
I think this is the same thing we have been trying to do with the U.S. Pacific jurisdictions. So, the other Pacific islands that are not part of this, they are elsewhere, I think the same problem.
So, I think working with the same standardization and definitions will be helping everyone. So, in general I think most of the problem in FSM is really economy and disorganization, of course.
Whoever can help by any means, I think that is what we need. I am not sure if I include everything, and I am not really well prepared for this, because I just got what I was supposed to talk about this morning.
DR. IEZZONI: You did fine. You have been very articulate.
MR. ELYMORE: If I can answer any questions, that will be my best shot. I think I can answer anything.
DR. IEZZONI: Are there any quick questions for Mr. Elymore?
DR. AMARO: This is the first time that the issue of the ICD-9 to ICD-10 conversion has come up today, so I just thought I would ask.
Are you using ICD-9 now for both coding your death and hospital information, in ICD-9?
MR. ELYMORE: Yes, all our morbidity and mortality are reported by ICD-9.
DR. AMARO: What are your plans as far as moving to ICD-9?
MR. ELYMORE: As a matter of fact, we have the books, but we cannot bring our people to train. We don't have anybody to train us.
DR. AMARO: That is probably going to be an issue for everyone. So, we may as well realize it.
DR. IEZZONI: We might as well make a uniform recommendation for that.
MR. NGWAL: That is also an issue with Palau.
DR. IEZZONI: It is actually also an issue for the 50 states. It is a big problem for us here.
MR. ELYMORE: I have one more thing to add. In the area of confidentiality, at the moment we have five cases of AIDS in Guam from FSM. However, Guam cannot tell us who they are.
In FSM, we wish to know who they are, because we can control them. I think in this area of confidentiality in FSM, when it comes to worst, I think it is better to know who they are, because we cannot afford one.
For the past two cases, which were imported, they were from somewhere and they came in. We diagnosed them. Everybody in FSM knows who they are, because they are very good with the sign-in centers.
For those that they diagnosed currently right now in Guam, even our leaders wish to know, if there is a law to confirm them in FSM, we will put them in and get them out. That is our confidentiality in FSM. We know that in the United States it is very difficult.
In FSM, it is better to prevent our people than keep it confidential.
DR. IEZZONI: That is an fascinating issue. I see Dr. Koo, the epidemiologist. It is a classic public health problem. Let's talk about that tomorrow. That is a very important issue.
Can I just ask you one thing, Mr. Elymore. It sounds like you track people through various school age programs or whatever. Do you have an identifier that you give to everybody?
MR. ELYMORE: Yes, we all have the hospital number, or the record number is identified.
DR. IEZZONI: And that is uniform across your entire health care system?
MR. ELYMORE: That is right.
DR. IEZZONI: And that is assigned at birth?
MR. ELYMORE: Yes, every person now -- in fact, in hospital policy, we are not supposed to give hospital number to births. We give them a temporary number.
Because of this MCH requirements and all those federal, we have to assign. Every newborn now is assigned a number.
DR. AMARO: Can I ask you how, then, the health information is used, for what purpose? How do you use the fact that you are able to have a unique identifier for people, or is it just primarily to respond to federal requirements?
MR. ELYMORE: I think yes and no. I think one thing we all should -- at least in FSM, we know that we have been doing things just to get money. We have been trying to satisfy the agencies.
I think we also need to think about our internal operation of our programs. That is what tracking at the dispensary level, you know, we also set up a radio system.
CDC, they usually require laboratory confirm. Now we ask them to give us the clinical confirmation so we can keep track on it. If they can come to the center, they can take a lab. There is no laboratory in the outer islands.
It is going to be a limited list based on those priority diseases. They can radio in and then we can keep track of it.
DR. KOO: Just a quick comment on the unique identifier. I am fascinated that you all have that system, and that is way ahead of where we are.
I was wondering how you can maintain that. I know how spread out FSM is, in terms of keeping track of it. That must be an enormous task.
MR. ELYMORE: No, we need the computers. That will speed up our work. In the public health, they already have enough computers. In the hospitals, in fact, we start out with the old ones.
Now with the public health program, which are federally funded, we call them rich people. When they get a new one we ask them, please, can we have the old one.
DR. IEZZONI: So, does everybody have a card with this number on it?
MR. ELYMORE: Yes, in the hospital we have the patient index card. Now it is also given to the newborns.
MS. SABLAN: In the CNMI it is like that, too. Every person has a unique identifier which is the medical record.
DR. IEZZONI: That they use for every health care transaction, be it clinic, immunizations, everything like that?
MS. SABLAN: Yes. Even if you go to Tinian and Roda, they have a different set of numbers that they start with.
Let's say that we start with one-something, then Roda will start with two-something and Tinian will start with three-something. They all have unique identifiers. Tourists have a different number. We track everyone with a medical record number.
DR. IEZZONI: The same on American Samoa?
MR. UELE: On American Samoa, since we have one hospital, everybody goes to see that one hospital, one way before he dies. If you are sick you go over there.
There are some people around without hospital numbers, but when you have a scratch on your leg and you go over there, you have to have a hospital number. They give you some sheets to make a file for you.
There is no way out. If you are sick, you have to have a hospital number.
DR. IEZZONI: Mr. Santos, I know you have only been at your job for how long did you say?
MR. SANTOS: A week.
DR. IEZZONI: I give you the following choice. It is 10 to 5:00. We can either wait until tomorrow morning or if you want to go now, it is up to you, which one you prefer.
MR. SANTOS: I would rather go now.
DR. IEZZONI: We will let Mr. Santos go now.
MR. SANTOS: First of all, I would like to thank the subcommittee for inviting the Republic of the Marshall Islands for this meeting. I was pleasantly surprised to be selected to go.
Not to sound like a broken record, from what I have heard so far, in terms of the problems faced by the other islands, it is also system based, the lack of manpower, the expertise in terms of the technical assistance necessary.
Before I go on as well, I would like to point out that, while the issue, what we are talking about right now, health data needs issues and perspectives, a lot of good things have happened in the Marshall Islands over the last several years.
First of all, I would like to go over the first question in terms of sources available for data collection.
I felt that I have to point out the revenue for the Marshall Islands and how they get the money. First is the Nitagella(?) fund. That is the name for the Marshallese parliament.
That is a general fund that they actually allocate to each of the ministries.
There is the compact lump sum funds that are given to the Marshall Islands and then distributed by the Nitagella as well.
There is a section 177, which is for radiation victims and their descendants, from the 1940s and 1950s.
There are federal grants, a lot of federal grants. They are actually the cornerstone of primary health care in the Marshall Islands today.
There is also MISSA, the Marshall Islands Social Security Administration, where four percent are taxed from employee and four percent from employers. They represent a third of the total budget for the Social Security administration.
Also, other grants will also include things from the United Nations and currently the Asian Development Bank.
In terms of data needs, first, the Bureau of Planning and Statistics collects vital and health-related data and documents them to compile in the current health report that is given annually. The bureau is one of several under the Ministry of Health.
In terms of how births and deaths are reported, there is a registry. However, as far as I know, and from what I have learned in my short time there, is that births in the hospital are recorded in the hospital under the patient's medical chart, and also submitted into a maternity log.
However, in the outer islands where TBAs, or traditional birth attendants, or health assistants are in charge, there is the -- this is a possible source of underreporting because most of them cannot or do not have the time to actually send the data to the hospital.
In terms of the vital records, they are currently on paper, although there are massive -- I mean massive -- efforts being made to computerize them.
One of the hopes of the ministry is that the HMIS, the health management information system, proposed by the ADB through Boston University and Queensland University Institute, will hope to expand and enhance this capability of collecting vital records.
The health gaps in the Marshall Islands in particular is that there is no established protocol in which data is collected.
There are enough people, and several donor agencies will actually agree that there are enough people to collect the data.
There is just the need to make it uniform, make it consistent and make it complete. The capacity to design and collect population-based data in particular is very varied and it depends on the specific proposal or grant that gave the money to that particular program.
It is also important to point out that there has not been an official census in the Marshall Islands since 1988. Basically, right now they are just using forecasting in terms of the population.
The data used in these cases is for the annual reports, information for outside funding, guidance to health providers and administration in terms of program evaluation, planning, restructuring.
One of the responsibilities of the Bureau of Planning and Statistics is to collect and analyze, compile and publish these health indicators for the Ministry of Health.
Lately, and from my limited experience, I have seen that most of the data are not reliable and donor agencies have often had to forecast or predict current data needs when they write their reports.
The respective -- I believe it is necessary, even critical, with the massive down sizing that the Marshall Islands is undergoing in terms of the compact funding and the limited funds available to it, I feel, in my personal opinion, that health care data needs have to be addressed so that it can be used more effectively in terms of evaluating programs, reallocating funds and to actually show any improvements or non-improvements in the current health care delivery system.
I can become more specific, but in the interests of time, I can answer any questions either today or tomorrow, and I can assure you that you will get more accurate numbers from me tomorrow.
DR. IEZZONI: That doesn't leave us much of a choice, does it? I think we have to wait until tomorrow. But that is good. Are there any immediate questions, though, for Mr. Santos? He has been awake for many hours.
Okay, this has been a remarkably productive day. We thank everybody around the table. We hope that you can come back energized tomorrow, so we can begin to craft some recommendations. Thank you. Meeting adjourned.
[Whereupon, at 5:00 p.m., the meeting was recessed, to reconvene the following day, Wednesday, July 15, 1999.]