Hubert H. Humphrey Building
200 Independence Avenue
Washington, D.C.
Roundtable Discussion with Representatives from The Federal Agencies and Insular Areas
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, Wshington, D.C.
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: I would like to get started on the second day of our meeting. If people could take their seats, that would be helpful.
Yesterday was fascinating. The subcommittee really enjoyed it and learned a great deal from all the representatives around the table.
Today we hope we can learn more from you, and that the representatives of the federal agencies who are here today, and you, and we can engage in a dialogue that will hopefully result in some meaningful recommendations that we can submit to the Secretary.
What I would like to do first, though, as we usually do, is to go around the room and introduce ourselves. There are one or two new faces around the room, people who will hopefully actively participate today.
My name is Lisa Iezzoni. I am at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston.
DR. AMARO: I am Hortensia. I am professor of social and behavioral sciences at the Boston University School of Public Health, and a member of the Boston Public Health Commission.
DR. IEZZONI: By the way, today is David's birthday, so we wish him a happy birthday.
DR. TAKEUCHI: I thought I kept it a secret.
DR. IEZZONI: No, you can't keep such secrets from us.
DR. TAKEUCHI: I am David Takeuchi, the birthday boy. I am at UCLA and will be en route to Indiana University by September.
DR. GREENBERG: I am Marjorie Greenberg from the National Center for Health Statistics and the executive secretary to the committee.
MR. HANDLER: I am Aaron Handler. I am chief of the demographics and statistics branch, Indian Health Service, Rockville, Maryland.
MS. SABLAN: My name is Magdalena Sablan. I am from CNMI, Department of Public Health, manager for the Health Planning and Statistics Office.
MR. UELE: Ny name is Fale Uele, American Samoa, health information systems administrator.
MR. ELYMORE: My name is Amato Elymore. I am from the Federated States of Micronesia. I am the national health statistician.
MR. NGWAL: I am Nick Ngwal from the Republic of Palau and I am a health services administrator for the Republic. Thank you.
MS. WADA: Roylinne, here from the Department of Interior.
MR. DAVIDSON: Bob Davidson, Deputy Regional Health Administrator, Region II, Public Health Service.
DR. ISER: Joe Iser, Region IX, Department of Health and Human Services.
MS. FEASLEY: I am Jill Feasley, representing the Institute of Medicine.
DR. KOO: Denise Koo with the Department of Public Health Surveillance and Informatics in the Epidemiology Program Office at the CDC.
MS. FREEDMAN: I am Mary Anne Freedman from the Division of Vital Statistics at the National Center for Health Statistics.
MR. CAMACHO: PeterJohn Camacho, Chief Public Health Office, Department of Public Health and Social Services, Guam.
MR. SANTOS: My name is Jonathan Santos. I am from the Republic of the Marshall Islands, Ministry of Health and the Environment.
MR. BROWN: I am David Brown. I am representing Ron Manderscheid from the Center for Mental Health Services.
DR. MONTOPOLI: Mike Montopoli from HRSA.
MS. SAUER: I am Rebecca Sauer from the Census Bureau.
MS. WARD: Elizabeth Ward, an administrator from the Washington State Department of Health.
DR. HARDING: Richard Harding. I am a child psychiatrist from South Carolina.
MR. SCANLON: I am Jim Scanlon from HHS. I am head of the data policy office, and I am executive staff director for this committee.
DR. IEZZONI: You also serve on the staff of the data council. Can you just mention briefly what the data council is? I think it will be instrumental, or can serve today's discussions.
MR. SCANLON: Yes. HHS, about three years ago, decided to strengthen the way it does business in the data policy area and the privacy area.
The Secretary created within HHS an internal high level advisory group to her. It is called the HHS Data Council.
This August it will celebrate its third anniversary. It has been meeting on a monthly basis since then.
That group serves as the forum within HHS for data policy, privacy, statistical issues, both health and human services.
It reports to the Secretary and advises her on all these issues. It is headed by my boss, Peggy Hamberg, the assistant secretary for planning and evaluation, and Bob Eisenberg is the head of operations.
It is made up of representatives of all the agencies in HHS as well as the major staff officers.
DR. IEZZONI: Okay, let's go around the room in the back. Can you introduce yourself?
[Introductions are made off the microphone.]
DR. IEZZONI: That is great; good. It is true, we are live on the internet, through the kind offices of the Department of Veterans Affairs.
That is why we need to speak into the microphones, as well as to aid in the transcription of the meeting.
What we are going to try to do today is have a dialogue to come up with recommendations. Before we do that, though, there were some lingering questions that I know some people around the table and sitting in the audience had from yesterday.
While we have you folks here, we want to take advantage of that opportunity to hear first-hand from you about some of these remaining lingering questions.
DR. IEZZONI: David, I know you had a question about surveys. Do you want to maybe take the lead?
DR. TAKEUCHI: Yes, I was wondering, for each of the areas, when was the last either census type survey or community survey on health, looking at health status, access to care, that was conducted in the areas.
DR. IEZZONI: Why don't we go around the room?
MS. SABLAN: We had the 1995 census done, and on a quarterly basis the census statistics office, under the Department of Commerce, does a household survey on a quarterly basis.
I think the last one, they were doing it when I left, on Micronesians. I don't know why they want to get that certain group, possibly because of the Compact.
On health, the public health nutritionist did a survey on Head Start children with the University of Washington, I guess.
This was like last year, on November, where they came out and they did a home dental survey as well. They wanted to combine the dental health and nutrition, how does it play a role in the health of the children, I guess.
DR. TAKEUCHI: Those were very specific surveys, I guess.
MS. SABLAN: And there was a breast feeding survey or questionnaire around August of last year. They wanted to get a percentage of women who do breast feed, like after four months and six months. That is the data that is needed for MCH, one of the MCH performance measures.
This year, the last survey that I understood they took was the public school system back home, in collaboration with the HIV/AIDS coordinator, they did a behavior risk survey, a youth behavior risk survey on eighth grade students. I have a copy of that in my brief case here, just the results of that.
Our 1996 public health annual progress report, before I left it was in the printing shop for perfect binding. I just got a copy that was spiral binded. I have a copy of that, too, and I gave one to Barbara yesterday for xeroxing, if anyone would like that.
DR. IEZZONI: Have you look at, for example, the National Health Interview Survey to see whether that would be something that would be appropriate or useful to you?
MS. SABLAN: I haven't seen that kind of survey. Maybe we are not introduced to that. I would like to see one.
DR. AMARO: I was wondering, when these surveys are done, and the examples you gave us, were they used, the results in any way, to develop programs locally? Was there some follow up by the U.S. Government to provide funding for programs that were suggested as needed by the data?
MS. SABLAN: Yes, with the census survey, I guess they get a little money from Richard Miller here, to do those surveys.
After they do those surveys, they go out to the governor's office, or the government, different departments of the government. They feed them back the information.
It is called our utilization workshop, where they explain about what happened to the surveys. For us, they will come back to the schools and inform the teachers of that certain grade level.
I guess for the nutritionist, she got a little funding also from the University of Washington. I am not sure which university it was. I think it is University of Washington were she got the sponsor.
She was able to get out in the -- there is a food and nutrition council, who got the survey results.
Breast feeding and the annual progress report, we do have that distributed out to all different agencies, departments and libraries for reference, including the Congress, the Library of Congress.
Yes, that was during last month that I gave them a copy of that. They were distributed to CDC and the Bureau.
DR. AMARO: Yesterday we talked a little bit about sometimes the data are gathered but not always used then to bring resources in or develop programs. I am just trying to follow up on that and see to what extent, in the situation you gave us, the data actually helped to inform decisions or to bring more funding in.
MS. SABLAN: We also have to present it to the legislature. We get our local funds from the government. So, we have to present those surveys.
DR. IEZZONI: Okay, American Samoa.
MR. UELE: Question number four on the questionnaire, I discussed it with my colleagues back home. There is no health survey since 1985.
We have the census survey in 1980. It was about 20 percent surveyed. In 1990, another census, U.S. survey. Then in 1995, another 20 percent survey was taken by the department of government planning. Now it is called the Department of Commerce.
We are not included in that census survey. In 1995 there was combined efforts between the Department of Health, Department of Manpower Resources, and Department of Urban Planning.
Those are the studies that I know. There were no other surveys of health, unless there are open surveys, but no other health surveys since 1985.
In fact, most of the health data were not collected on the regional level.
DR. IEZZONI: Is that because of funding, or what are the reasons?
MR. UELE: Exactly. Probably that is why the Department of Congress in 1995 was involved in that survey.
DR. IEZZONI: Mr. Elymore, how about Micronesia?
MR. ELYMORE: We had the 1994 national census, which was completed. It is being used. We also have income and expenditures. All of them were done with support from the Bureau of Census, Department of Commerce, U.S. and OTIA. They went out and assisted our government.
All these things are available. I think the Bureau of Census may have copies for your information. You can contact Mike Stroop or the representative across the table can help you with them.
We have had many surveys done. Most of them are really from the Bureau of Census and from her office.
In health, we have only small cluster sampling surveys in immunization, to just find out the coverage of our children, two years old kids, which has been very alarming. It is very bad.
It is really important that we be able to help the people on Chuuk. I think they have 40-some percent coverage. So has Pohnpei. At least, it is better than Chuuk.
The bigger our states are, the worse the coverage is. So, the government has been taking action and they will definitely need support.
Our situation back home, the economic situation, is very bad. If there is one thing we do, it is to learn to tackle that problem.
MS. WADA: Can I add something? Immunization rates, the cluster surveys have been kind of spear headed by epidemiologists.
They have known for quite a while that the immunization rates are very low among two year olds. FSM naturally reports the rates to the MCH bureau within HRSA.
Whether or not, you know, it triggers any kind of special emphasis or focus, I would have to say no. That is very significant to me.
DR. IEZZONI: They have reported it but no action is taken.
MR. ELYMORE: Those are based on the very recent surveys. They are small surveys, but in the 1980s we had major surveys, especially in nutrition.
From that time many programs have taken place and some of our hospitals are working hard in order to meet the problems.
We have interagency collaborations, but I think the health department as to do their efforts. It seems like they have to look for help from other agencies.
DR. IEZZONI: Joe, you had a comment on immunization?
DR. ISER: Amato, I recall two other things. I think UNICEF did a survey of vitamin A deficiency in children?
MR. ELYMORE: Yes, and those are also activities, mini- surveys, after the major national survey.
DR. ISER: Hansen's disease.
MR. ELYMORE: Yes, there are a couple of surveys for specific areas, TB and leprosy and right now the one is immunization.
MR. SCANLON: Are the territories included in the decennial census, the U.S. decennial census?
All the territories are, and the current population survey, the 1990?
MS. WADA: Not the freely associated states, not since the Compacts of free association. The insular territories, the Commonwealth of the Northern Marianas, and FSM did its own census in 1994, and the Marshalls are thinking of a census. The last by the United States are in 1988. The Marshalls are thinking about doing its own census with ADB but the dates keep moving, as I understand. Palau, not since --
MR. NGWAL: 1995.
MS. WADA: It was yours with Hawaii assistance and Census Bureau?
MR. NGWAL: Yes.
MS. WADA: It is a different kind. IT is not part of the United States.
MR. SCANLON: It is often with support from the Census Bureau to do your own census or population survey?
MS. WADA: Yes, with funding from Interior.
MR. SCANLON: The current population survey, which is the monthly survey that the Census Bureau does, are any of the territories - - I think Puerto Rico was included. Are any of the territories in the current population surveys?
MS. WADA: I am not aware. I don't have the history and I don't know if Rebecca does.
MS. SAUER: I am new to work with the islands. I can get that for you.
DR. IEZZONI: Jim, the reason this is important is because?
MR. SCANLON: The decennial census for the United States and for the states is probably the major factor in allocation of funding for all the block grants and other things.
Many of the problems here in our states relate as well. I mean there is sort of a foundation of the way you approach the system.
MS. WADA: I don't know if the insular areas are as dependent on census counts for grant funding. I think grant monies are allocated almost as a ceiling.
MR. SCANLON: Yes, there is often a special formula. Yvonne Benner, who was here yesterday, gave you an example of how money for the children's health insurance program was allocated based on the current population survey, which is the sample survey that census does.
For Puerto Rico, even, what they had to do was combine sort of three years to get an estimate of the number of children, the percentage of children, who were uninsured.
Normally that would have been the basis on which the allocation would have been based.
If you think of sort of a hierarchy of statistics upon which policy is made, the nature of that census is probably critical, and then the sample surveys, whether it is part of the CPS or whether it is a special survey that supports something like that. That kind of information is often used for allocation.
MS. WADA: I don't think it applies when you look at the Pacific insular areas, or maybe even the Virgin Islands.
Maybe Puerto Rico, because they have three million people, but when you look at the small aggregate population, at least in the Pacific area, you are talking about less than half a million.
Grants are awarded to individual countries and territories, and the numbers are small.
MR. SCANLON: On a residual basis.
MS. WADA: That is right. If you were a federal agency awarding grants, these members are blips on the screen.
Even though needs are quite urgent in a number of areas, for CDC and for SAMHSA and for HRSA, these small islands compete with large states with larger voices and advocates that are closer by. Attention just can't get paid.
DR. ISER: Another example is TANF. Three territories are eligible, but only Guam participates, because it is too expensive.
ACF has recommended to American Samoa and CNMI that they don't participate, because it is too expensive for the jurisdictions to do so, under the requirements of TANF. It is only Guam right now.
DR. IEZZONI: What aspect is too expensive?
DR. ISER: I am not quite aware. I work with the ACF folks and Dennis Setlock is my contact in our regional office.
We have had discussions back and forth and I know he talked to American Samoa for a TANF for them just this year, because there was money that they could set aside for that.
They didn't have welfare before that. They didn't have AFDC before that. Looking at the numbers, Dennis told me that they recommended to American Samoa that they not participate. It is just too expensive. They can't afford it.
MR. SCANLON: I would think, though, without the numbers -- I mean, obviously a lot of this allocation is political and sometimes the numbers don't make a difference, as you know. Often the numbers don't make a difference. It is political. It is what happens in Congress.
They say that the worst fights in Congress are over these allocation formulas. But how would you demonstrate you even have a problem -- I mean, how would you demonstrate something was a problem or was getting better without the basic numbers themselves?
MS. WADA: That is the catch 22. You require numbers to prove there is a problem, but the problem exists with or without numbers. Somehow or other, proving that case is almost impossible.
Just as a further to Dr. Iser's comment about funding and jurisdiction, saying no or being advised not to take it, the administrative overhead costs are what probably prevents the entity from taking that money.
If they are offered like $50,000 to do something that would cost the entity much more to put it on, the wise person says no.
DR. ISER: I can't speak for Puerto Rico, but for Guam, the Medicaid spends more money for TANF and Medicaid than any other state -- proportionately from its own revenues -- than any other states.
If you talk about fairness, and California can afford to have all the supplemental services, and Guam can't afford any of the supplemental services. I am sorry to speak for you.
MR. CAMACHO: Dr. Iser is correct. I believe the funding formula generally is 80/20 or 75/25, as far as Medicaid is concerned, federal and state match.
It is not that way on Guam. Guam is capped, I believe, at $4.5 million and we have a very needy population. As a result, the local government is over-matching by hundreds and hundreds percent for the money we get.
Even in terms of reimbursement, $5 million or the impact of the Compacts on Guam, $5 million doesn't go very far.
Echoing what Roylinne was saying, we give you numbers. We give you information. As you said, it doesn't really make a difference when you look at a population of less than half a million.
I think we call can probably deal with that. Yesterday, when I was making my presentation, if you are looking at areas where you can say that, because they are based on numbers and prevalence, they are maybe low.
Would it not be better to throw the money into keeping it low, than to wait for a big crisis to happen.
DR. IEZZONI: I think with the low immunization rates, we should fix that, before the epidemics occur.
MR. HANDLER: One point I want to make. The current population survey is conducted monthly. I think there are about 80 or 88,000 households in that sample.
On a national level it can only represent a nation, possibly regions. It doesn't represent even states, even the largest state.
If the outlying areas were to be included, they wouldn't get any data back. States don't even get data back from them.
DR. IEZZONI: I feel badly that we didn't continue around the table. Do any of the rest of you have issues that you would like to expand upon around the census and the surveys? David, did you have a follow-up question?
We didn't hear from everybody. That is why I just asked if there were any other issues that people wanted to raise. It doesn't appear that there were. Mr. Santos, anything else?
MR. SANTOS: The last census in the Marshall Islands was in 1988. There was a recent nutritional survey done in 1994.
The data used in that particular survey was collected in 1990-1991. So, they did find a lot of problems, and they still want to know, was one done in 1990 and 1991.
In terms of recent problems, they are really not sure, although they expect it to be the same.
DR. IEZZONI: Can I move on to a slightly different survey question? I am sorry Dr. Zamora isn't here, because yesterday she said something that was very provocative and interesting, that I wanted to follow up on.
That was that Puerto Rico -- she will be back? I figured, because there is action and discussions up on the Hill about Puerto Rico, as there were yesterday, so I figured she was probably preoccupied elsewhere.
She made the point yesterday that they redesigned the National Health Interview Survey for Puerto Rico, because it really didn't, as it was written, apply to their population.
I just wondered whether any of the Pacific region folks had looked at the National Health Interview survey and whether you felt similarly that it either applied to your situation or didn't apply to your situation. Have you looked at it?
MR. CAMACHO: I am not aware that Guam participates in that particular survey.
DR. TAKEUCHI: Hawaii as added, at least for 1990, an annual health surveillance survey which is based on early work done on the health interview survey. I don't know if it is continuing.
DR. IEZZONI: I also had another question. In our briefing materials, we read two reports from, I think it is Father Keisel, that I found fascinating.
Basically, he was talking about the fact that you need to use key informants in communities to find out about substance abuse, rather than going directly to individuals and surveying, because of cultural contexts and factors that need to be considered.
Is that issue purely around a census concern, like substance abuse, or would that need to go to key informants apply to other aspects of getting information about health care and health?
MR. ELYMORE: I think so, but I am sorry that I am not observing either substance abuse or mental health. There are a couple of them.
I think just because I don't have a copy of them, I don't know about them, but I know there is something going on with substance abuse and mental health.
Father Keisel, the priest there, has been doing that, starting from school. But to answer the question, I think that the survey has been very helpful to the people.
DR. IEZZONI: It looked like a wonderful survey. What I wondered was whether there were other health data that need to be collected in the same way, because people are not going to feel comfortable responding to the questions.
MR. SANTOS: Another one would be family planning and contraception use. I know in the Marshall Islands that is an issue.
As far as informants, we basically designed a program where we will train e mail health assistants and assign them to the outer islands.
In that sense, they will be informants, but it will be on a formal basis.
DR. IEZZONI: I guess where I am heading is if we wanted to do a health survey, like the National Health Interview Survey, where members of the Bureau of the Census show up on people's door steps periodically and ask them questions.
It doesn't necessarily sound like that would work, in your part of the country, or of the world.
MS. WADA: It wouldn't generally. It depends, jurisdiction to jurisdiction.
DR. IEZZONI: I understand. In certain areas, for certain types of questions it wouldn't work, like the issue of the substance abuse. It clearly didn't work in those places.
MS. WADA: Yes and no. I mean, you can have a whole day long discussion about the methodology.
DR. TAKEUCHI: I think my sense is that for a lot of these issues -- and I think that is where getting the people who will most benefit from the survey involved in the actual design of the methods, the questions and so on, because they will understand how to approach some of the issues and make up some of the kinds of questions that will get the best data.
DR. IEZZONI: I agree completely. It is just we need to have flexibility in the system to allow that to happen and it is not obvious that you always have that flexibility.
DR. TAKEUCHI: There has been some great work done for Native Americans, American Indians, Alaskan Natives, by Spiro Manson and his group in Colorado.
They have developed some sort of nice methodological processes to get the community involved, and working through the methods and designs.
I think we could benefit from that work. I know in Hawaii, they worked with some native Hawaiian groups there to develop good methods, too.
DR. MONTOPOLI: Recently NHANES has been adapted for use in Pakistan. That might be an interesting model to look at. In fact, the results have come out and were presented at the APHA convention.
It seems to be feeding into policy development there. So, that whole process of adapting not only an interview survey, but an examination survey may be a model to look at.
MR. GRANT: I am Bruce Grant with SAMHSA, Pacific Health coordinator. That community participatory process has been very extensively used for the Palau substance abuse needs assessment survey, and also in Guam and in the CNMI and American Samoa.
The Hopkins group has been given explicit instructions to ensure that there is a community process in terms of instrumentation, design and input. So, we are working toward that end.
The Marshall Islands and the FSM, although Fran did a very good job with the very limited money we had, we weren't able to capture that community input, for a variety of reasons, and that is a whole different ball game.
Look for some models existing already in the Pacific Island jurisdictions.
DR. IEZZONI: Stay there, because Hortensia has a question.
DR. AMARO: I have a question. So, SAMHSA has been doing a number of these studies in the islands. My question is, what is the plan for the agency in how these data are going to be used?
Tell us a little bit about that, and how the agency is planning to either allocate funds, whatever mechanisms, to address the issues that you find?
MR. GRANT: First, we hoped that the data would be used locally first, that it is locally owned, in the allocation of resources and decision making and policy making. That is the first hope of ours.
I think we are having some trouble having that happen because of the placement of the substance abuse and mental health programs within the hierarchy of at least four of the jurisdictions.
It is very hard for the substance abuse and mental health people to have a voice in some of the traditional health providers, to make them aware of the findings.
It is a little different in Samoa and in Guam where we have separate departments. They need to talk more, and then the public health services and the department of social services in American Samoa and in Guam. They have to talk more.
The second thing is, for SAMHSA, we have used the data to launch an initiative in the Pacific region, a collaborative initiative, very modestly funded, right now for about $200,000 or $250,000.
Unless that data was in hand, and those needs assessments were completed, however preliminary some of the data might be, I can assure you that we would not have been successful in getting that money.
Part of that initiative is to build upon the work that has been done at the community level with a lot of the training that has been going on to train the local work force in data collection, et cetera, and to continue to stimulate or catalyze the formation of -- at least for now the game plan is sort of a regional community epidemiological work group to look at the systematic patterns for alcohol abuse, et cetera, throughout the region.
We hope to link that with NIDA and, we hope, with RPRA and SBC, et cetera, et cetera, in PIHOA. So, there are some tangible benefits that have happened already with the needs assessment, and they have been on a shoe string budget; I can tell you that.
MR. NGWAL: Let me say something with regard to that as far as Palau is concerned. In Palau, we have these data reported monthly, for both the mental health and the substance abuse programs.
It is an ongoing program. In fact, for the mental programs in Palau, we have outreach programs that go our weekly, for prenatal or our well baby clinics and stuff like that, around Palau every week. All these data are gathered and reported monthly.
On the substance abuse, because of limited resources, we collect a lot of these data, we use them for the population, as far as planning health care delivery.
A lot of it is not used. We need a health planner or some full-time person to look at the data and try to put them to best use.
They are reported monthly. So, we know a lot of cases. As far as collecting the information, a lot of it is family interviews and also informal type situations. But they are being collected and reported monthly.
DR. KOO: I want to pick up on some of that. I think Dr. Zamora also mentioned the BRFSS, the behavioral risk factor surveillance system yesterday.
She talked similarly to this idea of customizing to the area. They already had to customize it to Puerto Rico because only 75 percent of the population had phones.
You could take that a step further to customize to the ethnographic issues. But I think as a government person you have to sort of talk about resource issues.
I notice BRFSS does not tend to go out there. I would imagine it has to do with the training needs, et cetera.
The other thing that I thought is interesting is what we were just talking about here, the opportunities for integration.
Obviously, the issues that SAMHSA is interested in are the kinds of issues that are asked for in BRFSS. That is again to what Dr. Iser mentioned yesterday about the agencies working together, and I am sure we will talk about that some more.
DR. IEZZONI: That is why I am glad to have Jim here. The data council is supposed to help think about rationalizing that ostensible fragmentation.
Are there any other questions from the committee or people around the table before we start talking about recommendations?
DR. TAKEUCHI: This is going back to the community surveys. Assuming we had all the resources to do this survey in an area, and we could get a good instrument, would there be any kind of methodological issue that we need to know about, in thinking through some of the logistics that maybe tend to be obstacles in doing a survey of this kind of magnitude.
For example, I think that yesterday someone said that completing a long interview may be a problem. People are not used to doing a survey or an interview, and after 20 minutes or an hour they would just say forget it.
Would there be other kinds of issues that might be unique to this area?
DR. MICHAEL: I know, in the Virgin Islands, we have done a couple of household surveys. One of the problems that we run into it finding homes.
We have tried to get some help from the Census Bureau with that, in terms of how different neighborhoods are laid out.
If you pull an address, sometimes it takes the interviewer more time to find the place than to do the interview. Then that becomes really costly, depending on whether you are paying the person by the hour.
When they go on the clock, if you spend two hours looking for a place and then you spend 30 minutes doing the interview, of course, the BRFSS is a telephone survey, so we don't run into that problem there.
Any time we try to do household surveys, that is definitely an issue. I think that is something to think about in terms of ways to get around those types of problems.
It is particularly a problem on St. Thomas, although we have had some problems on St. Croix. We have had better successes finding residences. Sometimes it has been a problem.
MR. HANDLER: When the Census Bureau conducts the national population survey once every 10 years, what they do first is design maps that have enumerated districts, that the enumerator would go to.
They have a geography division that does that, but then they rely on local people as well to give the boundaries of the enumeration districts.
Then what they do is they give the maps and the lists of addresses to the Postal Service, and they do a postal address check.
Then, after they get the results back from the postal survey review, then they finalize the mailing list. Maybe that is what is needed in the Virgin Islands. Do these people get mail? Do they have postal delivery? Maybe you need to do that first.
DR. MICHAEL: I think a few years ago when I was up here, we did some training in population estimates. One of the things that we were asking about was the census maps.
I am not sure. It is sort of a priority issue for the Census Bureau, with everything they have to do. I am not sure where we are with that, since I am not the main point of contact with the census.
Then, when you talk about doing the household surveys, and the department of health and the department of education, I guess it is a matter of communicating with our census contact, to see what we will get from the Census Bureau in terms of the maps.
I don't know if we have gotten them. I mean, it is going to be time to get them soon, because the 2000 census is coming up. In the interim, part of it is a priority issue, I think, in requesting that type of information from the Census Bureau and when we get it.
MR. HANDLER: Another point I made is that the Census Bureau asks the post office to verify what they came up with. Then they come up with a final product after there is a post office check.
DR. IEZZONI: Jim has a question.
MR. SCANLON: If I could ask Dr. Michael and Dr. Zamora, the question came up before about the census, the U.S. decennial census.
It sounds like U.S. Virgin Islands is included in the decennial census, as well as Puerto Rico. So, there is that basic decennial census participation.
Do you recall whether Puerto Rico or the U.S. Virgin Islands is included in the current population survey, the big housing and population survey that the Census Bureau does? I think Puerto Rico may be included. I am not sure about the U.S. Virgin Islands. Neither?
DR. ZAMORA: In Puerto Rico, the census is under the Planning Council. They have offices that work with data gathering on the decennial census and they update it.
For example, the maps, they revise the maps and they make them available for whoever needs them. There are some charges but they do that work.
In fact, census tracts are used for many, many population studies that are performed in Puerto Rico.
The planning council are the ones who are responsible for that updating. It is not really the census office. It is local and they make the population estimates by age groups and sex and municipality or whatever. That is made roughly by the planning council.
DR. IEZZONI: Are there any other preliminary questions?
DR. MICHAEL: Since we are actually talking about needs and we are talking about the census, I think one of the areas that in the Virgin Islands I know we would like some assistance, whether it is directly from the Census Bureau or another agency, is we have been doing population estimates in between the censuses.
I think one of the things we really, really think we need to get a better handle on in terms of methodology is estimating or determining in and out migration.
Right now we use school enrollment, sort of, as a census, but we are thinking, because of some of the things that have been happening in the Virgin Islands for the last five to seven years, that we probably need to utilize something else.
That has a lot of implications for what we are going to get in terms of final estimates. That is definitely an area that we would like some technical assistance in.
DR. IEZZONI: It sounds like some of the Pacific jurisdictions had that as a real interest as well, a lot of people coming in. I forget which country it was yesterday.
DR. SABLAN: That is the case with our island also. There are a lot of immigrants coming in. With us, the ones that we have to keep track are our own local citizens who go out and in.
In our immigration, when you are considered as a local resident, all you do is just go across the immigration and they don't even look at your passport or anything.
There was an incident were one of the instructors was a foreigner. He is white. They thought he was a United States citizen. So, they let him pass the immigration.
He was telling me that he, himself, went back to the immigration officers and said, excuse me, sir, are you sure I can pass through here. They said, yes, yes, go ahead. Then they saw his visa, and he showed it to him and he said, no, no, you go to the other side.
So, there are bound to be mistakes. Like Dr. Michael said, we need to keep track of our own people going in and out. That is an important part to make the population more accurate and reliable.
The immigrants that we get, like the foreigners, we do keep a count of them. The Visitors Bureau keeps track of all the visitors coming in as well.
DR. ISER: I just want to remind people that CNMI controls its own immigration. It is not part of the U.S. Naturalization and Immigration Service. They have their own people who do that.
We can talk about soft and hard walls. There is a hard wall of immigration between CNMI and Guam, in essence, because Guam is very careful, at least U.S. INS in Guam is very careful about people coming in and out of CNMI.
DR. ZAMORA: Do any of the territories keep track or have any idea of people coming in to the islands?
MS. SABLAN: It is a really bad situation back home. Yes, we do have a lot of those. It is not because they come in or leave in the first place. It is because they overstay. That makes them illegal.
A person who is legal to come to Saipan or CNMI, because you have a very little air strip and it is really small. The point of entry is the airport.
It is very hard for an illegal person to come in there without any means of passport or visa or permit. So, the illegals that result from that are the overstayers.
For example, they are given a 90-day visa and then they will overstay.
DR. ZAMORA: For us, in Puerto Rico, they come all over the islands. They come in boats, anywhere around the island.
So, they stay and if they have babies, then they become American citizens because the baby was born in the states.
We are not supposed to provide services to that population, but then you have a public health problem if you don't immunize them or provide basic services.
You are not supposed to count them or even provide services. So, it is a big problem. Everyone keeps asking us, how big is the problem. We really don't know because we cannot keep the statistics.
In the first place, we are not supposed to provide services. I would like to know if you are doing anything.
MS. SABLAN: In the CNMI, it is very funny, because we are like the first stepping stone into the United States.
What they do, what the foreigners are doing, like from China and the Philippines, they obtain a 90-day visa as a tourist.
I don't know, for one reason, how they ever board the plane when they are eight months or nine months pregnant.
The first thing you know is they come to our hospital when they are going to give birth. They never come for the first prenatal check up.
Then the next thing you know is, they are gone in two weeks because they paid the additional DHL for a United States passport.
The reason why they really go there is just to dump the babies, like give birth and get out on the next plane and now you have a U.S. passport or you are a U.S. citizen.
With the office where we process the birth certificate, we ask them sometimes why they come there for the purposes of just giving birth. They will admit that they want a United States citizenship.
DR. IEZZONI: PeterJohn, you had a quick comment on that?
MR. CAMACHO: Guam is experiencing problems with the in-out migration. We also, like the CNMI, because of the Compacts have significant numbers from the freely associated states.
These are pregnant women who come on island and deliver the babies and, as you were saying, become United States citizens.
Because of restrictions on welfare reform, our parents may not be entitled, but the children are. Guess who controls all the food stamps and the public assistance? It is the parent.
We also recently had two boatloads of Chinese aliens that were captured. Guam is a small island, so pick any port you want to land your boat, and I guess they were caught.
They are expecting that there may be more coming. The issues of communicable diseases that these individuals may be bringing with them, 89 were tested and, of the 89, 18 tested positive for TB on the skin test. They eventually were cleared by chest X-ray.
DR. IEZZONI: The INS issues and the immigration issues we can't really deal with here. We can certainly deal with the public health implications, or at least raise the public health implications and not just the public health implications, but the public resource implications of giving care to babies who may not have had adequate prenatal services.
Lynnette Araki has been kind enough to agree to be our scribe. She is going to kind of be making note of all the various recommendations that we have.
Obviously at some point we are going to have to prioritize and think about what is realistic to do.
While we are on the topic of just counting the people who live in your jurisdictions, are there any other recommendations about counting people?
MR. UELE: I don't know if it is a recommendation or not. I just want to add to the discussion of tracking and control, people coming into American Samoa.
During 1996, the governor, who is the governor right now, promised all the aliens who were staying in American Samoa that if he becomes the governor, he is going to waive like amnesty policy.
All of those who are overstaying now can go to immigration office and register and get their paperwork correctly and become a resident or not overstayer.
Some people were there over 30 or 40 years overstaying. When he became governor that is what happened.
That was challenged in the court by the legislature, whether he had the power to do that or the legislature does.
Anyway, it turns out that almost 3,000 people overstayed for the last how many years. American Samoa has almost 60,000 people, and that is a lot of people. Almost 50 percent of those people are not American Samoan. That shows how many Samoans -- it is almost like Hawaii.
My point is there are also control mechanisms in the immigration office. If you enter, you can enter either in a three-day permit, or you can enter by somebody sponsoring you for 30 days and then extend it for another 30 days and then you have to go back to your home country.
I don't know how the immigration keeps track on who is overstaying and who is not overstaying. Sometimes they hold the passport at the airport and then people go to immigration and some people go to the airport.
So, I don't know about that. That is where some of the gaps are. I just wanted to add that there are also some problems in American Samoa.
DR. IEZZONI: It is obvious that dealing with this immigration issue, though, is going to be important in counting how many people need services.
If you have census numbers from 10 years ago and you have had a lot of in-migration, then even if you have done calculations based on birth rates and so on, you are not going to have properly estimated the number of people who need services. I think this is an issue that we really need to flag.
Let's move on, though, to begin to talk -- yes, Dr. Zamora?
DR. ZAMORA: I think another issue with the census is that if we are going to be included or compared or analyzed regarding the United States, they should have the same variables included in the census on the mainland.
For example, in Puerto Rico there are some questions that have been excluded from the questionnaire because it is too costly.
You will have some data from the mainland, but you won't have any in Puerto Rico.
So, my recommendation is that there should be a set of variables included in all the census from all over, the mainland and the territories. I think that is very important.
MR. SCANLON: That is a good place to start, actually, with the recommendations. Populations and I supposed vital statistics as well are sort of the foundations on which a lot of these other methods - - utilization data, administration data, program reporting, and so on.
What else would you recommend for the decennial census, if you could?
MR. UELE: May I ask you something? I would like to also answer one of the questions on the census, people from the bureau. There are some questions that are not really applicable to American Samoa.
There is really no need to ask, you know, how many trains in American Samoa. There are no trains. I just made that up.
There are questions like that, clearly you spend too much time trying to ask everybody and nobody pays any attention. So, we are sort of trying to revise our own questionnaire to fit our own needs.
DR. IEZZONI: That is an excellent point. Dr. Michael?
DR. MICHAEL: I know, in the Virgin Islands, we have -- I don't remember the exact name of the group, but I am in this group of people who right now we have spent some time in communication with the census.
So, it is that these are some of the questions that will be on the 2000 census. If there are some questions that you want on for your jurisdiction, are there some that maybe are on the one that is here that we don't think we need.
We have had some input in, I guess, tailoring the census to the Virgin Islands.
Sometimes -- and again, I don't know if this is the standard for the territories as well as Puerto Rico, but I know that probably in the last year or year and a half we have been having meetings off and on and reviewing some of the items on the census.
I think I got only a couple of months ago some of the final decisions made by the census. I think there were a couple of questions we wanted that they didn't accept, but some of the other modifications have been done and accepted by the census for the Virgin Islands.
MR. HANDLER: On the 2000 census, I have some brochures in my office that describe the methodology that they are going to use.
In 2000 they are going to do something that is a little different than they ever have done before. They are going to have blank census questionnaires available in shopping centers and stores, that you can pick up and complete.
Besides the ones going to your home, in the event that a person completes two questionnaires, they have a computer system to unduplicate duplicated records, and hopefully that will work.
They are going to have like kiosks and places where you can pick up a form.
DR. IEZZONI: Joan, come to the microphone, please.
MS. TUREK: The decennial census consists of two forms. There is a short form that as very limited information, and there is the long form, which gets the income, the housing, the commute to work and all.
Do the territories get both forms or do you guys get just the long form? You are dealing, then, with a sample on the long form which has the detailed information that would be used for administrative purposes.
DR. IEZZONI: Maybe we should move on, in terms of counting people, the vital statistics, births and deaths.
We heard a lot of interesting information yesterday about how people just are not captured in the vital statistics reporting system, because they are born in places that are not hospitals in places like the Marshall Islands, et cetera.
Do people feel it is important to have accurate vital statistics, birth and death records. If so, are there recommendations that you think we should put forth to improve the accuracy of those reports?
What kinds of recommendations could we make?
MR. NGWAL: I would like to say a little something about that. I don't know if it is a recommendation.
It is very important. In Palau we have this weekly report that goes out to the villages or states in Palau, conducting everything from well baby clinics to sick calls and everything else like that.
We capture a lot of information and this is done weekly. I don't know if there are any births or deaths that are not reported in Palau. If so, it is probably a very, very small number.
It is important that we need to report this information so that we keep track of the population. I feel very good about the way things are happening in Palau in terms of capturing that information.
DR. AMARO: Could you say a little more about how that outreach is done?
MR. NGWAL: In Palau we have designed the Ministry of Health to take the medicine to the people, to take the health care to the people. It is conducted by public health in Palau.
They schedule sick calls around Palau, and this happens every week. So, every week we have doctors and nurses, the dentists, going out to the different communities, conducting these workshops every week, and capturing information.
Some programs are coordinated with the Department of Education, so there would be child behaviors, nutrition captured, all kinds of information are involved.
DR. AMARO: How are the vital statistics linked into that?
MR. NGWAL: We have dispensaries located in all of these districts in Palau. All the people who get sick would go to these dispensaries.
We also have the nurses and the doctors in those dispensaries that go out and visit the elderly and visit the homes within their area.
Palau is very small in terms of population. There are about 17,000 people. There are not a whole lot of places that don't meet the nurses and doctors stationed in those areas.
DR. IEZZONI: Are there paper certificates that people have to fill out that they bring back to some central office when there are births or a death?
MR. NGWAL: Yes, if they are born in the local villages, they report to the dispensaries, because there are doctors there. So, they report back.
DR. IEZZONI: On a certificate or a form?
MR. NGWAL: Yes, on a form.
DR. IEZZONI: Then that gets back to a central office?
MR. NGWAL: That gets back to the public health. It is part of the Ministry of Health records.
DR. IEZZONI: I was going to ask Mary Anne if you could comment, based on what we heard yesterday --
MS. FREEDMAN: Actually, I would appreciate having a short recap of some of what we heard yesterday specifically addressing two issues.
I think that the situation is different in each of the territories and we are painting it all with one brush.
The issues, for me, is number one, coverage. What percentage of the vital events in your area -- births and deaths -- do you get, especially births, deaths and infant deaths, with emphasis on the infant deaths as opposed to all deaths.
The second issue is the completeness of the information reported, and then there are obviously other issues, but I would really like to know if we could get some sense from everybody about how they feel they do on those two items.
DR. IEZZONI: Jonathan, do you want to start?
MR. SANTOS: In terms of the coverage, the births and deaths are pretty accurate, if they are done in the hospitals themselves.
The problem in the Marshall Islands right now is the distance with the outer islands. You have to catch a plane.
In terms of paperwork and logs and such, and the dispensaries, they are often under staffed. Even medicines are expired sometimes, from what was found before.
As for infant deaths, most deaths are reported to the hospital. Those that are reported are logged on.
Very often, before a patient or a body is buried, it has to be cleared through the vital statistics people in the bureau.
They are the ones that actually give the go ahead, that they are logged and allowed to be buried.
MS. FREEDMAN: What about very early infant deaths, occurring the first day or life or within a few days?
MR. SANTOS: Those are also done.
MS. WADA: There are a range of problems when you are trying to count fetal deaths. It is by jurisdiction and by culture, what is viable, what is not viable, what is reportable, what is not reportable. We have had problems with that.
MS. FREEDMAN: When you look at your total births, what percentage of them occur in hospital? Do you have any sense of that?
MR. SANTOS: The majority of them, but there is no solid number, because they are unreported. So, we don't have a total denominator.
We do know that in the outer islands, in terms of like the birth rate, it is very high. Where the ministry is, in Majuro, the capital, most people do go there because they do know that that is the best place to get medical attention, should they need it.
Midwives, traditional birth attendants, are trained to actually deliver outside.
DR. TAKEUCHI: Can we add low birth weight to this?
MS. FREEDMAN: I guess that is part of the issue of completeness of information.
MR. SANTOS: Birth weight, as far as I know, is recorded. I don't have the up-to-date numbers, but they have found that high birth weights, the way they classify things right now is very unfair, but they do document that, especially for the grants that the ministry is applying for, in terms of maternal and child health.
DR. MICHAEL: In the Virgin Islands, as far as coverage, I feel pretty confident that we get everything. On the births, I suspect that over 99 percent occur in hospitals or a clinic.
The ones that do not occur at the hospital, when they are reported, partially is -- it should be reported within 10 days, but when they are reported is based, in part, on when a parent might want a birth certificate for something.
On some occasions there is someone three years post partum. But generally speaking, it will occur within the first six months. I think we have a pretty good sense of that.
With infant deaths, one of the things that we noticed that happens on occasion with very early infant deaths is sometimes we may have a death certificate but then there was no birth certificate prepared, or there is a birth certificate and the death certificate wasn't done.
That is one thing that we have to really sort of keep on top of. On several occasions, we have had to say, well, you did a death certificate, but where is the birth certificate.
Fetal deaths, I think we are also okay on, because we do have, in our code, a definition of fetal death and when it is reportable.
Completeness of information is a different issue. On the death certificates, I think we are pretty good. A lot of times, though, we don't get the information on the time of death. That doesn't seem important to physicians.
Sometimes when we have accidental deaths, the information on -- those of you who know the birth certificates, 30-A, B and C or whatever -- those are missing in terms of manner -- were the accident occurred and what time, et cetera. That is a problem area from time to time on death certificates.
Another problem that we have run into -- in 1996, I think, it was really an issue, because we have on the manner of death section an item that says, undetermined or under investigation.
We are still trying to determine how best to get follow up information from the medical examiner. A lot of times there is under investigation or undedetermined.
We presume that something else is going on, whether it is legal intervention or information being sent away for whatever reasons.
We don't get the information back on what the final status is for that particular death. In 1996, what happened was that one of our categories, which is ill-defined causes, which would include those types of deaths, that turned out to be one of our leading causes, there were so many of them.
Right away that was like a really red flag. So, we are trying now, going back even as far as 1995, to try to clear up some of those deaths. Those are the key problems with the death certificates.
With the live birth certificates, our main problem actually is only with one of the hospitals. That is that we continue to have problems getting most of the information in the section on medical risk factors.
We have done many things. We have had many meetings. You know, you pull out the law and you tell them they have got to report. It has not helped so far. I am not sure what we can do.
That is the main area in terms of completeness of information on the live birth certificate that we are having problems with, and that is mainly on St. Croix.
We do, unfortunately, with some of the Hispanic mothers, and probably Haitian mothers also, sometimes we get very poor information, I think, on the demographic section of the live birth certificates. Those are our main problems.
DR. FREEDMAN: Before we go on, could I just make a comment that the kind of problems that Noreen is describing are not atypical throughout the United States.
DR. ROUSE: Could I just ask Noreen and others, too, if there is alcohol involved in traffic crashes, what is the procedure for verifying or reporting alcohol-involved deaths.
DR. MICHAEL: Thank you for asking. That is a real weakness in the Virgin Islands. I think we do a very poor job there.
On the death certificate, in part II, other factors not really directed to the underlying cause, but contributing factors, once on a rare occasion, somebody who dies from lung cancer, the physician might have heavy smoker or something like that. So, we know those are actually related to smoking.
Nine times out of ten, there is nothing. To my best recollection, I started coding deaths personally in 1995. None of the MVAs I have coded, have they ever been alcohol implicated.
Now it is probably not likely that it was not implicated in any event. That came to light, I think, last year or the year before.
We had a request from Mental Health and Substance Abuse to give them some information on deaths that, I think, in NCHS terminology, were alcohol-induced deaths, and then we had different categories.
What struck me immediately was there were none in the MVA category that were alcohol induced. On the birth certificates, too -- I would say that I don't believe the information that we get in terms of use of alcohol and smoking.
We did a household survey. It was all related to substance abuse, I think. One of the things that became really clear is that people are really in denial about those things.
We also get no information on birth certificates about substance abuse by mothers, like if they were on crack or something like that.
We do have crack babies, so that type of information is just not being reported as it should be.
MS. FREEDMAN: A comment on that. Generally speaking, if a decedent -- if there was alcohol involved but it was not the decedent who was legally drunk, you would not see it on the death certificate. Many times it won't be on there anyway.
MR. CAMACHO: Guam's vital statistics program is by statute. We utilize the U.S. standard for certificates of birth, death, and also fetal death.
I guess since we are one island only, we are fortunate because they are all born in the hospital, the local civilian hospital or at the military hospital, which is required to report their births also to our vital statistics office.
If you are born anywhere else, either by ambulance or at home and brought to the hospital, that also is reported.
I believe our completeness with regard to reporting births is very good, almost 100 percent, and probably an allowance for someone who may not be reported within the required time period.
Deaths also I believe have a good system in place. In order to be buried, you must have a death certificate. Our office also issues a burial permit. We will catch you one way or the other. Fetal deaths are also reported.
With regard to Lisa's question, again, like what Mary was saying, if alcohol is listed, it probably would not be the primary cause, like if there was a motor vehicle accident, and it may not be even as a secondary cause.
DR. ZAMORA: Puerto Rico has had a law since 1931, but we have recorded events since 1898. We have had a contract with the National Center for Health Statistics since the mid-1970s and we comply with their requirements.
In the case of Puerto Rico, the only one that can fill in a birth or a death certificate is a medical doctor. Coroners cannot fill in a death certificate.
We have to rely on the details that the medical doctor includes in the death certificates and, you know, sometimes they write a lot of details and sometimes they don't.
Again, our main concern is the analysis of this humongous data base that we have. We are not using the MICAR and the super MICAR to code the causes of death. We are working on that, but still we send the data and then they do the coding here in the States, and we would like to do the whole thing in Puerto Rico.
We have had a system for many, many years, and we have a network around the island. We have the electronic birth certificate and we are working on the electronic death certificate.
MR. NGWAL: In Palau, most everything else, as I said, is collected from the dispensaries. There is not much done electronically right now, but most everything else is logged.
Competent information is captured. There are a lot of deaths related to accidents. It seems a high number because the population is so small.
I guess it happens everywhere else, but for the kind of information to be captured, Palau is actually -- I feel pretty confident that they are capturing most of the information.
MS. FREEDMAN: Your information on deaths, do you feel you get something in the 95 to 100 percent of your deaths reported?
MR. NGWAL: Around there, if not better. We feel confident we capture most everything that happens.
MS. FREEDMAN: I will ask about early infant deaths again.
MR. NGWAL: Early infant deaths are also captured, too, because of these outreach programs that we have weekly, prenatal and well baby care. Most mothers are seen. I don't know of anybody else that is not seen.
MR. ELYMORE: In the Federated States of Micronesia, as I mentioned yesterday, our general coverage is 81 percent of births and 50 percent of deaths.
Our problems at this time is the collection from the community level, and also at the hospital. Within the hospital, I think still about five to 10 percent are not reported.
I mean, it is not reported -- it is not complete, according to the U.S. standard. We have a modified birth certificate.
In that certificate we also ask for complications of pregnancies, labor and delivery and all of that. So, mostly pregnancies, it is not there, and then the certificate is incomplete and does not go into the computer until everything is reported.
Those are some problems within the hospital, but our major problem is at the community. So, what we really need in that place is, for example, scales.
A lot of the newborns take place in the community. We need scales so that we can weigh them. We want to also fill out all the baby weights, so we can -- it is a good indicator for the mother and children.
We also have outreach programs like Palau, and I am sure everyone else. Many times they go out, the mobile team, which they call them, to give immunizations and also other preventive programs. Other times, they bring in the newborns.
Those are the gaps. I think that we feel we already are reorganizing ourselves to improve that, through our mobile teams.
At the same time, we are trying to make a policy at a higher level, that the governors will also make the municipal governments responsible to help us out at the community level, to think that the registration of births and deaths are very important.
In fact, in one of our states, they report 100 percent. The other one, they report 89 percent. So, the other one, last year they reported 95 percent. That is Pohnpei. Pohnpei is the second largest, but they report very well new births. That is the worst.
The island is all covered by the road, the access to the different communities there, and they only have five outer islands.
A place like Yap and Chuuk, Chuuk is the most populated, but it has a lot of outer islands. So, that is the most critical place, Chuuk.
We do need the scales. There are many of our health assistants who are located in the outposts and dispensaries. They don't even have a scale. Even though they are well trained to deliver a baby, when they don't have a scale, the information is lacking.
In Yap, they have very good infrastructure in the primary health care, so the dispensaries all have scales. The only problem in Yap is that most of the health assistants out there are male.
In our culture, the male cannot even see the female, especially the private part. So, we are encouraging them to also have a female attend to, at least if they cannot deliver -- those that they can deliver, they should deliver.
Those that only a male provider is available, at least one of the -- the teacher or somebody can keep the record, weigh and send it over.
So, it seems like Yap is going to be improved in no time. They also have a good radio system, which was funded by the FHP program, the family health program. It is a California foundation.
I think the situation seems to be improving. It is a matter of organizing ourselves, and of course the other means to support -- of course, we need the health education for the public.
Another problem, we think the flow of the system -- the system is like this. We at the hospital are the register. We have it signed by the director and then it is filed at the court. It has to be filed at the court.
Many times there are lost things, just getting it into the offices. So, we know all these problems and we have been really working hard on it.
There are still some internal problems between services and offices. That is births.
Most of our deaths that are not reported are around the perinatal area, the perinatal period. That is like Dr. Michael mentioned.
Around a delivery time, sometimes a baby is born and one or two breaths and he died or she died, and there is no birth or death certificates filled out.
Most of our deaths are not reported around that deaths. There are also some that are not reported because they just don't report in.
I think that with the improvement of death reporting it is very good. It is part of the culture that if somebody dies, they have to announce it on the radio, for all the family to have a big feast. That is part of our culture.
In Pohnpei the deaths are very good. So far it has been very good. I think most of the area that really needs the help is Chuuk, because there are so many outer islands.
I just want to mention something also within the reporting of deaths. In the past, our leading cause of death was usually unknown.
That is because many doctors were hesitant to diagnose cases where they were not attending, even though the cases were admitted to the hospital. They were discharged and come back in for the same thing. Just because they were not there and they were not sure, they just put unknown.
Also, in the field, in the community, when people died, they just put unknown. We have a lay report system which we also use, and now unknown is not our leading cause of death. It has been very much improved.
Based on the ICD-9 underlying cause of death, what we report is the underlying cause. At the same time, we also have other associated with the underlying cause of death.
So, we don't list everything. We will report underlying, but if any researcher, if anybody wishes to know what other associated to the death, we have that now. Everything is computerized.
As far as bringing to the machine, everything is there. It can generate and provide that, based on the certificates. We have certificates of births and deaths.
Those are out gaps in bringing them into the system.
MS. WADA: Can I ask a question? Is there a legal base, as there is in Puerto Rico and the Virgin Islands, and in Guam, for death records, that you have to have a death certificate in order to bury or dispose of personal estates?
FSM does not have anywhere a public cemetery.
MR. ELYMORE: In FSM we don't have. Maybe those are some of those things that we can do in order to be able to capture all this.
But in looking at the situation, it really seems to be fairly easy. Even though we have got widespread variants, once we make the people understand, they support this, and the infrastructures develop, and work with the leader of those communities.
Of course, at this time, the ministry, for leaders, is only interested in the population that is ages up to 40, who are eligible for this, from 18 and over.
So, this is one area that has been very much accepted by the very important leaders. They have to incorporate it and it will be part of the leadership, so we can also share.
DR. IEZZONI: Let's get the reports from the two remaining folks, and then we will take a break. American Samoa?
MR. UELE: In American Samoa, I would say the coverage is, with births and deaths, almost 100 percent. As I mentioned earlier, there is only one health care system over there, one hospital. So, everybody could die over there and go over there and give birth.
If there is a death in a village or a birth in a village, the public health nurse will report that to the medical records and it has to be announced by the medical doctor.
As far as the weakness, I say there are some problems earlier. Birth certificates, I myself, I am not too happy with it. They just started to use a new birth certificate about five or six years ago without other people knowing about it.
It was sort of like the director of vital directors and the HE. So, to me, there is some very, very important information that needs to be included in the birth certificate.
The newly created birth certificate is very very small. You don't get much statistical data from it. So, my recommendation is that we need to look into those birth certificates and probably revise it with more piece of cake into it, more life into it. It is not too much to get from our present birth certificate.
Also, there is one area there that I am very concerned about and that is the mother and father. If you give birth over there and it is not married, and you have that field unrecognized by law, that means there is no father.
So, maybe we should look into what would be the proper code to use for that, or some other suggestions we need for that.
There is another concern I have as far as statistics from the medical records. Everything is filed in the medical records.
Then a final birth certificate or death certificate will be going to the vital records office. Right now, the vital records office is under the medical records office. I believe it should be under the Department of Health.
Then we don't have to bother the medical records office. We just go straight to the vital records and get our records right away.
Right now we are separated and we have two different bosses. If the vital records are under the department of health, we can just use these any time and just expedite a lot of work.
As far as the alcohol related deaths, usually the Department of Public Safety will handle that for us. If they submit it that these people have an accident and it is alcohol related, they will provide that kind of information for us.
Just one, I think, maybe recommendation. If we do have the information office have as its own certified coder to code some of these diagnoses, where sometimes we have only two and one is retiring and the other one is sick and then who is going to catch up with the birth and death certificates.
MS. FREEDMAN: Does the medical office code the cause of death for your death records?
MR. UELE: The medical records office has two coders who are certified.
MS. FREEDMAN: And they are the ones who code the death certificates?
MR. UELE: Yes, or the leading causes of death, I was listening to my fellow say that the leading cause of death at one time was unknown. Our leading cause of death is heart disease. Of course, if the heart stops, you die. That is about it. Thank you.
DR. IEZZONI: Okay, thank you. Ms. Sablan?
MS. SABLAN: Okay, like Virgin Islands, Puerto Rico and Guam, we think we have about 99 to 100 percent coverage for births recorded and deaths as well.
With our deaths, even if they die off island, what the family used to do was bring the death certificate and there was one filed with health and there was one down at the public courts.
Since we believed that person, that was their homeland, they do have to bring back the death certificate to us. We do also have a lot of island deaths that we report also.
For births, we have sometimes maybe around one to three births that happen outside the hospital, riding in the car riding up to the hospital, and in an ambulance, or in an airplane.
We have the outer two islands, which is Rota and Tinian. They do have a birthing center there. Ordinarily, with Rota, it is closer to Wam(?). They then go to Wam or are evacuated over to Saipan if there are complications. But those are reported as well.
With Tinian, that is the smallest island. They usually come like when they are in their eighth month if they are having complications. We have a guest house for Tinians where they can be there and checked by the physician if they are already on island.
Births on Tinian are around one to five a year, so it is very small. Like I said, they have this like six months of time to come in and register their babies.
After six months if they don't show up, they are registered as delayed registration.
In the hospital now, we usually accompany our draft birth certificate, which the parents fill out before they even come to our office to be officially registered.
We accompany the birth certificate with a letter saying you are obligated to come into our office and register our children.
If not, after two weeks, your birth certificate will be filed as it is. That means there are going to be blanks in the birth certificate and you will have to go through court proceedings to put them in and that will cost you a lot of money. They do come in the two weeks of time because they think it is very important.
For the other group that really meets the U.S. citizenship, of course the U.S. passport, sometimes they call us one month before they deliver to say, can we make an advance birth certificate. You would not believe it, but it is happening and they are not even in labor yet. We don't have any problem with births.
With deaths, you would have to get a death certificate in order for you to be buried. We do have a public cemetery and we do have what are they called -- it is very funny because we have like those that are like Catholics and those that have another religion, so they get to be buried in another burial grounds. Those are the ones that require the burial certificate.
Otherwise, if you are a Catholic and you die, then the rectory office would request the death certificate from the hospital before they even give you a plot. You need that in order for them to bury the body.
In terms of completeness, I share the same problem with the Virgin Islands. Like I said, the population or the birth certificate, there is no problem.
Then the medical, the health information, the second half, that is the problem. Whoever is the interviewer, it is whatever she can ask during the interview. That is all the information she can get.
Now going down to complications during birth or during pregnancy, at delivery or after birth, I have set up two meetings with pediatricians, obs, and midwives themselves, so that I was telling them to fill those boxes.
All they have to do is check what happened to this birth or this delivery. It seems I am not getting anywhere because they say it is enough we delivered this child. Then we have to put a check mark.
I say, somebody has to do it. If you don't do it, somebody has to do it. The staff there, the people who are processing the certificates, they are not well versed in this medical terminology to read the medical records chart and say, this must have been an eclampsia or gestational diabetes or whatever.
That is still in the air and I was talking to our medical director for public health. He said, we are going to make another attempt. If they don't do that, then I guess the staff will have to go through training in terminology so they can look at the chart and check mark those boxes themselves.
We have added in the birth certificate another item to our questions there, which is chewing of betel nut.
In the islands it is popular to chew betel nut. It is like a nut that you chew it and you put lime and certain minty leaf and then you get the ups. Like you chew it and you get heated up and it is like a stimulant. I don't know how precise is that.
DR. ISER: Tobacco is often included with that.
DR. IEZZONI: It is a narcotic.
MS. SABLAN: And tobacco is often included in that. It is really a lot of things put together. We have added that to our birth certificate and we have asked the women, during delivery, during pregnancy, were you chewing betel nut.
If they say yes, it is like how many nuts do you chew during the day. It is the same like smoking. How many sticks are you smoking, and drinking of alcohol.
I haven't heard of any babies born with a nut syndrome or whatever. I haven't heard or seen those. Up to now they haven't proven really that betel nut chewing is having anything to do with a low birth weight baby or even a high risk baby.
Even for the death certificate we have added the portion, I think we added illicit drug use, and alcohol related as well as smoking.
Yes, the DPS is the right place is the get these alcohol related deaths pertaining to motor vehicle accidents.
If it is another alcohol related death not related to MVAs, but something to do with just the health -- let's say you die of cirrhoses, and it is alcohol related, then the doctor gets to check that.
If it is an MVA alcohol related, the best place to gather data is the DPS. We have it also at the criminal justice, and the agency collects all these statistics.
We have established a mortality review committee recently because of the fact that we have been having deaths that are like unknown deaths or undetermined deaths.
We really think that nobody should die of something. Everybody must die of something. Either your heart stopped or you stopped breathing.
So, the task of that mortality committee is to really review the committee and the history of the patient, and come up with some more reliable cause of death than just saying undetermined or unknown cause of death. That is in the works now.
For infant deaths, most of our infant deaths are recorded because, like I said, they have to have a death certificate in order for them to bury their children.
Fetal deaths, we have like one to three in a year, so it is not really a lot. They still have to come over to be recorded. We don't see anything wrong with recording this. Our problem there is the completeness of the birth certificate.
DR. IEZZONI: Thank you. Mary Anne, do you have any wrap up comments based on what you have heard around the room?
MS. FREEDMAN: Can I just ask one question before we do that? That would be on your mortality review committee, do you then change the cause of death on the death certificate, or do you plan to change the cause of death on the death certificate, or just change the statistical records?
MS. SABLAN: No, they just want to look at all of where it says cause of death, undetermined or unknown by itself, they want to look at that particular death and research it into the medical records and the history of the person himself. They come up with a more reliable cause of death that they can go back and change that. We would have to amend the death certificate.
MR. ELYMORE: Are we all using the 12 rules, ICD-9 12 rules?
MS. SABLAN: Yes.
DR. IEZZONI: Mary Anne, based on the training that you offer and what you have heard around the table and the needs, are there any kind of wrap-up recommendations that we can make?
Obviously, it is very diverse. The situation is very diverse. There is not a single thing.
MS. FREEDMAN: I think that what I hear is that we have a couple of areas where coverage is an issue. Those may be registration issues as much as anything else.
The issues related to completeness that I heard are not unlike issues that we hear in the States, although I think there are a couple of areas where it sounds to me like the data they are collecting, the birth and death certificates may, indeed, not be the same as many of our states use. I think they might differ quite greatly from the U.S. standard. That may be something that you want to pursue a bit.
On the training issues, we really didn't get into the issue of what people need in the way of training. I know that there is an issue with respect to training for coders.
We mentioned MICAR and super MICAR, which are our automated programs for coding cause of death and which require some training.
There was some mention of coders to code underlying cause. I think we do need to deal with issues about how that training occurs.
That is something that we naturally provide for states but, as I said yesterday, we don't deal with the travel.
There also is the fact that an issue that we haven't talked about too much is ICD-10. We are planning to move to that for the national system for data year 1999, and we have a big program planned to train coders in anticipation of that, that will be going on this fall and winter.
Again, there are a whole lot of travel issues here, because we hadn't probably thought about the outlying territories except for those who are the SAP participants.
DR. IEZZONI: You should think about it.
MS. FREEDMAN: We certainly should think about how we should handle it.
DR. IEZZONI: This issue of ICD-10 came up late yesterday afternoon.
MS. FREEDMAN: Yes, for me there are two issues there. One is what do we train people in. We were looking at what we call conversion training which is people who are currently using either our software or coding underlying cause, training experienced coders. We know there is the need for training new coders, both here and in states.
DR. IEZZONI: Because ICD-10 isn't purely a United States issue. It is going to be a WHO issue, a worldwide issue. So, it is something that every country and territory would be interested in.
MS. FREEDMAN: We have been doing some work in the international community with ICD-10 because there are a number of countries that use our software.
In general, we are providing some assistance and they are providing assistance to us. We have several countries who are helping us with a software development project.
In general, we are taking the position that the training issues and the implementation and operational issues really have got to be managed by each country independently, that we can, as a secondary thing, we can provide some guidance to other countries, but we really can't take that on as a primary responsibility. We have our hands full with the United States.
DR. ZAMORA: Also, it is important to not only train the coders, but the people doing the analysis, because there will be a difference.
I think at that meeting this issue was brought up. Statisticians do the analysis. They do the data entry, but we do the analysis and it will be a difference.
MS. FREEDMAN: Actually, I should have mentioned, that is another area that we have a pilot course that we will probably be -- I think we are doing the pilot in November.
Next spring there will be a series of regional meetings for statisticians and issues related to ICD-10.
DR. IEZZONI: Is it ever possible to videotape such things? Yesterday we talked about the high price of telecommunications and using satellites and so on.
It would seem to me that if travel isn't possible, then having some type of video or interactive video would be something possibly valuable to people at very distant places. Does that sound like something that would be useful to you all?
MS. FREEDMAN: There are some issues related to video taping. The way one does video tape lectures is different from the way one --
DR. IEZZONI: You have got a trade off. If it is people not being able to get to training versus having something that is maybe not exactly the way that you would train if you were in person --
MS. FREEDMAN: Yes. The other question for us is, are there mechanisms to get people to training.
DR. IEZZONI: The travel money. Frankly, the recommendation that would be best for everything, actually, is increasing resources. I think we are going to run up against brick walls in doing this.
DR. ISER: I wanted to echo what I heard Roylinne say, and that is not videotapes necessarily, but interactive CD ROMS.
DR. IEZZONI: Right, that is what I meant, interactive whatever. It is the CD ROM technology.
DR. ISER: The other issue is that bringing people in, especially from the Pacific, you may be able to afford to bring one person in.
You need to really look at doing the training out there, and not even in Hawaii, but out in Pohnpei or Guam -- sorry for American Samoa again. You need to train more than one person per jurisdiction.
DR. IEZZONI: That is why if you had an interactive CD or CD ROM, that might be a very good thing.
MS. FREEDMAN: There is a resource issue around interactive CD ROMs. We did have one that we are producing which is the pre- instructional material before our coders come to the course.
The cost of producing that was extremely expensive. It is not something we are going to be able to do for a number of courses.
DR. IEZZONI: Can you give us a ballpark estimate?
MS. FREEDMAN: It is in the range of a couple of hundred thousand.
DR. AMARO: How does that compare with, just on a regular basis, having a staff person travel out to the sites? It would seem like that is much more economical.
MS. FREEDMAN: That is something that, at this point, we can't support out of our travel budget. That may be the kind of thing that we could do something cooperatively.
DR. ISER: Can I give you some cost effectiveness? We did two TV programs last year, one in Saipan and on in Majuro.
We sent three trainers out for a period of two weeks and it cost us about $17,000 and we trained 110 to 120 people. At the cost of $150 per person, it is very cost effective.
DR. IEZZONI: So, that might be -- yes, Dr. Michael?
DR. MICHAEL: I was just going to say, when we did the ICD-9 training, we all went to Hawaii. Richard isn't here today, but that might be a way to get at least part of the resources for that.
MS. WADA: Travel is very expensive.
MS. FREEDMAN: There is another component to all of this and that is the post-classroom certification, technical assistance and support for people, which is something that we take on via e mail and telephone.
At this point, my concern is that this is training that has to take place within the next year to be effective. It is pretty late for us to start developing other training materials right now. We have to be starting to do it very soon.
DR. IEZZONI: Certainly within the next year in the 50 states we have various obligations. You know, the imperatives may be --
MS. FREEDMAN: And I don't disagree that having those training materials and doing this perhaps a little bit differently would be very worthwhile.
DR. IEZZONI: I think one blanket recommendation that we can make is that we look at different delivery options for giving training to the field.
We look at the cost effectiveness of the different options, we look at who needs to be trained on the ground, and come up with a recommendation after a period of study -- brief, hopefully, period of study -- to figure out what the most effective way of training would be.
DR. AMARO: I think the most important thing that we are interested in is making a recommendation that would have a long-lasting effect that would result in the inclusion, and in the thinking and in the budget, so that folks can get the training that is needed. Clearly, it is causing problems.
It would be unrealistic to expect the department to take this on without budget consideration. Our hope is to make some recommendations that would have some impact on budget and resources, that people could receive the training they need.
I am sensing your anxiety about your department having to take on things. I think if you help us think about what you need, then we can be very specific.
Our goal is to get it done, and you help us think about what you need to do that.
MS. FREEDMAN: I think there is another thing we should think about as we think about what is the most appropriate training mechanism, and that is how do we establish some sort of a core group of analysts and coders in some of these regions, who can interact with each other.
One of the things we very definitely find in states, especially the smaller states, is that those coders are very, very lonely, when you have one person in a state.
Now we are looking at a situation where there isn't even another state within a day's drive. So, I think you really need to develop a user group type of concept here and some mechanism for ongoing interaction.
DR. IEZZONI: Chat rooms on the internet for coders.
DR. AMARO: What about the idea of a trainer of trainers, so that people can get trained and there can be a resource base in the home area.
One of the things that we heard about, sort of an over- arching issue yesterday a lot, was about the need to build infrastructure and personnel capacity.
When consultants come in and kind of do the work and leave, it gets the work done, but it doesn't leave the infrastructure in.
As much as we can think if our solution of methods that leave the resources, the capacities and build on the capacities in house --
MS. FREEDMAN: I understand what you are saying there. It depends on the topic. With nosology, we find that it takes about two years, from the time that they start until the time that you have an experienced cause of death coder.
So, the train the trainer concept doesn't quite work as well when you are really dealing with the length of time they are going to train the individual.
Also, what is happening in that field, as we automate so much of the process, there are fewer and fewer people with the nuts and bolts experience, because they are coding through the records, and they are not coding an unbiased sample of records. They are only coding specific kinds of records.
I think that what we are probably going to see is that the senior level trainer expertise is even going to be more centralized in the future.
DR. IEZZONI: Why don't we come back to this issue of training. I think it cuts across a variety of different aspects of what we talked about yesterday. Let's take a 15-minute break. Thank you.
[Brief recess.]
DR. IEZZONI: I would like people to sit back down again, even though the room is kind of empty. I think that we need to try to make the most of our morning, because people are going to start filtering off in the afternoon.
Before we break for lunch, I would really like to touch on two issues, if we could. The first issue is, we have spent a little bit of time talking about training nosologists and coders.
Yesterday we heard from people that you need training of data analysts, that having people with the higher level skills is something that is of real concern to you.
I thought that maybe we could take a little bit of time, talking about what would be helpful to you in terms of training analysts who you could retain in your jurisdictions; that they wouldn't leave and try to find their lives elsewhere, but that they would stay and work with you on the issues that are important in your jurisdiction.
Are there any suggestions or recommendations for what we might recommend to help you with training people who will be data analysts? Do you have any suggestions about that?
We talked before about training people to do the coding. We heard yesterday a strong request for training people to actually analyze the data.
Any suggestions for what might be good ways of trying to train those people and having you retain them?
MR. ELYMORE: Usually, I think analysis has to be based on whatever the country or other agency would like to evaluate or see.
Under birth and death, we already have this IMS program with the Bureau of Census. This program is very powerful and amazing, it can give you just about everything you need from those inputs.
It can help you in cleaning up the data, and also you can later on do rates. From the IMS you can move into tables and it can also calculate all the rates.
DR. IEZZONI: So, it is obvious that there might be some software packages that could help you calculate numbers based on an input.
I guess what I heard yesterday from some of you -- maybe not from you but from some of you -- is that you need to train people with statistics, epidemiology, different skills to be able to understand.
Can you help us think, what might we recommend to help make that happen? What would be helpful, do you think, to get more data and training and data analysis.
MS. SABLAN: I guess to me it is like how do you really spot data -- like when you are doing analysis, how do you really spot a data that is not really valid.
It is like determining whether the data that you have is really what you have. For example, in my case we are using the MUMPS system. Patients are registered -- we have the patient registration filed.
I was going through one of my queries for this impact of Compact for the Department of Interior report, on the number of outpatients that are grouped into a different citizenship.
It is funny. I just accidentally opened up one record and found the name of the person, and the place of birth, for example, Hawaii, Honolulu, Hawaii.
Then on the second page of the patient registration file, where it says classification, it says, U.S. citizen born in the CNMI.
I am thinking, what? This person was born in Honolulu and yet the classification is telling me U.S. citizen born in the CNMI.
There the pointers there are not pointing right with others. I came up with like five records that I was able just to pinpoint out that.
So, I have met with the patient registration processing manager and I have called the attention of these discrepancies in the registration.
So, when I go back home we are going to have all these people that have front line people registering files, and making sure that they get the right information into the right spot.
When you retrieve information, you don't really know how accurate this information is. For example, in my part, I do the retrieval. I don't know how it is entered.
That is the training I want to find out. How would I be able to flag these things down. How would I be able to determine that the consistency of the data is there.
DR. IEZZONI: Hortensia has a follow up comment.
DR. AMARO: We heard a lot yesterday -- I think pretty consistently -- about the issue of manpower and how this seemed to be a cross cutting issue.
Maybe there are specific kinds of personnel that might be lacking more in one area than another. So, maybe if we talk a little bit about the issue of manpower -- and I think you brought it up very directly. You named like five areas yesterday and manpower was one of them.
Maybe we should talk a little bit about -- it might be useful to review exactly what are the manpower issues and what might be recommendations related to those.
In some areas those manpower issues might be able to be addressed through training. In other areas, it might require other recommendations.
So, I think that is what we are referring to, that discussion yesterday, about lack of manpower that might include, as one of the issues, training, but it might be broader as well.
DR. MICHAEL: I think part of what some of us mentioned yesterday, knowing the coding of the cause of death for example, in the Virgin Islands, of course, our problem is there are like not too many people doing anything.
So, the same person is going to be doing three or four or five or six things. But beyond that, for the places where you have one person doing the coding and maybe someone else doing the data analysis, I think one of the issues is, in working with data one of the things that a person who is working with data needs to be able to do is to determine when there is a type of discrepancy and when there is some inconsistency with the data that says, okay, something is wrong; we need to check this out.
For example, infant deaths, there is a certain range that the code for the underlying cause could be. Now, if you don't know that and you are doing data analysis and there is someone who is a year old and then the underlying cause is like 410, which is myocardial infarction, that is not a valid code on infant death.
If the person who is doing the data analysis doesn't have some understanding and some knowledge of the underlying causes and the range that refer to, like, lung cancer or breast cancer, for example, 1749, and then it is a male, this code would be different.
So, those are the types of things, I think, in terms of working with the people who are doing data analysis, to give them some type of basic understanding as to what is viable, what is meaningful.
Now, once you flag a record, you may have to really go back to figure out where the error is. That is part of, I think, what we are talking about in terms of working with the data analysis people.
If you have absolutely no idea of what is reasonable and what is feasible --
DR. AMARO: I also see that as a systems issue, a system of checks for quality of data and consistency. So, it is not just a personnel issue. It is a system issue, of having systematic approaches to data checking, clinical ranges.
DR. MICHAEL: Sometimes the person coding is not going to be the person who does the data management, which is now cleaning up the data before you do your data analysis.
DR. ZAMORA: I think we have to be prepared to make a difference between data quality and data analysis. As we do it in Puerto Rico, the people at the registrar, and the people from the information system, they revise for consistency of the data, and they fix whatever needs to be fixed.
Prior to Mary Anne's visit, we didn't do that quality control of the tables and the presentations that we used with statistics division, which is part of the data analysis.
Now we are looking for consistency on the tables and the presentations that we work on. We realize that there were a lot of mistakes, and we are fixing it.
They were mostly programming mistakes. Either they were adding up wrong cells or something like that. But my point is that you have to make a difference between quality of data and the analysis.
If you put the people who do the analysis to do all the nitty gritty of the data quality, they will get involved in some things that they are not supposed to, because they are doing the analysis.
DR. AMARO: A recommendation would be training around data gathering and coding and quality, and the other would be around analytic issues.
I also heard yesterday -- I can't remember who, but a couple of people talked about the need for what you called -- let's see if I remember -- health planners, people to kind of develop, besides the analysis and the gathering, to kind of sit back, look at the big picture, say what does this data mean and how do we translate it into a plan and how do we help that plan move forward.
DR. IEZZONI: Mr. Ngwal, I think you spoke to that.
MR. NGWAL: Yes, I talked about that yesterday. I think it all begins with a good infrastructure in place. Data is no good if it doesn't have the integrity. It has to be good data.
In Palau we gather a lot of data. But in order to make use of those data, as I mentioned yesterday, we need a planner to sort out this data, make use of this data, and hopefully be able to direct those data into the right places, whether it be for legislative purposes, to enact laws and regulations for the health industry or for other programs.
DR. AMARO: So, you are lacking people trained in that and it would be useful to have training in that area?
MR. NGWAL: Yes, most definitely. Also, the systems being fragmented, it makes it very tough for people to gather data at this point in time.
So, having those basic infrastructures in place to assure the quality of the data and to have the health planners to make use of this data, until we reach that point, it is going to be band aid work every time we try to do something.
We will fix it sort term but in the long run it will still be broken. So, we need to have some of these basic infrastructures.
DR. IEZZONI: I see a number of folks wanting to get into this.
DR. KOO: I just wanted to pick up on a point that he was raising that I think is another aspect of it, was this question of decreasing the need to know too many different things and fragmentation of the systems.
I think that is another approach to decreasing the training needs, is decreasing the number of systems. I think a number of them yesterday raised a question of integration.
Certainly, I can talk a little bit more, perhaps in a different part of the discussion, about some of the efforts that we have, going after integrating some of our categorical systems.
The other thing I just wanted to mention in terms of asking whether this would meet these kinds of needs, is the CDC has initially run things like field epidemiology training programs and data for decision making programs.
People are based to try to build capacity in other countries.
DR. IEZZONI: That is what we are talking about. Do you know whether they have done this in these Pacific jurisdictions?
DR. KOO: They have not done it in this area.
MR. ELYMORE: I was about to ask about looking to the short term and the long term. I think that can be a long term.
So, I think the ICD, if there is a school that can also help us in the long term, at that point we would want to do that and we can help our people through that.
DR. IEZZONI: There were a number of people who wanted to make comments.
MS. FREEDMAN: I think that when we think about training, we should think about a couple of other ways of categorizing it perhaps.
There is the kind of training that is very job specific, such as the coding training, such as training for analysts in certain aspects of vital statistics that you really get by -- it is really focused by vital statisticians providing that input.
Then there is the generalized kind of training that one can pick up at any university or college, at least in the basic statistics course.
In laying out how one develops a training program, you need to think about all of those resources and say, what do we want to target. What do we, as government, want to target our efforts at.
Generally speaking, I believe we should be targeting our efforts at the areas that you don't get in the generalized courses, in very specific areas.
DR. IEZZONI: So, like Dr. Koo's discussion about CDC sending out teams to train in doing epidemiology studies on site, that would qualify?
DR. KOO: Generally, what they try to do is identify a person who will be there on site to build the program, and train people who are there.
DR. AMARO: That is consistent with sort of the principle of making suggestions to build capacity as opposed to importing it.
DR. IEZZONI: Importing it and paying megabucks for consultants.
MR. BROWN: I wanted to speak to some of the long term strategies for solving some of these skilled personnel shortages.
Last year I visited the Federated States of Micronesia. That was one of the issues which came up, because there was a lack of appropriate personnel to manage the programs.
One of the suggestions I made was that maybe for the long term the way to look at this would be to have the department or ministries of health to work with the local college, in training people in mathematics, computer science, information systems, biostatistics and even epidemiology if it is possible.
That may not be easy, but I feel from here, from this committee, some recommendations could be made as to finding the right teaching professions to go there and help some of these colleges.
DR. IEZZONI: What do you all think about that suggestion? Does that work for your countries?
MR. NGWAL: I think that is a very relevant idea, if we could have somebody come in to work with the local colleges and the people over there, to spread the gospel, work with different issues and teach it to the local economy. I think that would work.
DR. IEZZONI: Jonathan, you were just at Boston University, weren't you?
MR. SANTOS: Yes, I was. Actually, speaking of Boston University --
DR. IEZZONI: Jonathan was a student of mine.
MR. SANTOS: Actually, some consultants who were from Boston University actually pointed out that there were limited numbers of highly trained Marshallese to actually do specific technical and managerial posts.
Also, in terms of like the health planner, we do not have a health planner for the last three years, which is probably one reason why the Ministry of Health is adrift.
Also, you can train people but they have to be qualified in the long run. To do that, I think, will also address one of the main issues, specifically training like for mathematics, sciences and biostatistics.
I would agree with Mr. Brown that it would be best done in the country rather than sending people out to actually do this.
DR. IEZZONI: This is a far trip.
MS. WADA: The University of Hawaii School of Public Health mounted a five-year initiative with the help of Interior, to actually take its professors out to Pohnpei.
They actually gave over 100 people certificates in public health. So, it was basic epidemiology, biostatistics, health planning, health administration, some environmental health.
It was very expensive. Although the need continues, there is very little we can do to continue that kind of effort.
When we look at the health work force problems in this particular area, Jonathan brought up some very good points that they have to be qualified. Even though you train them, they are not qualified. What good is training.
You also have to stay in that job. Historically, Amato has been in this area a long time, Fale has been working there, Maggie, PeterJohn, who is in and out, but he is there.
PeterJohn is a stable figure, but he is in the health system, in real key positions. But generally speaking, when we send people out -- Boston University, somebody we know of went there.
Whether he is going to use what he was trained to do is another story. That has happened time and time again. There are only so many people working for the health system.
What if you send one person out and that person is the only one who does the work and training takes six months.
Six months, they are without. Nobody does cross training so there is nobody there.
DR. IEZZONI: What is your recommendation, then, based on -- you know this area.
MS. WADA: If I knew what to do, I would have made a million dollars and not have been working in this area for 16 years.
DR. IEZZONI: So, in other words, it is a difficult problem. Where would you start, though, if you have limited resources.
As you say, the University of Hawaii programs sound like a Cadillac program.
MS. WADA: It was a Cadillac program.
DR. IEZZONI: If you had to do a Chevy program -- sorry to all the Chevy owners.
MS. WADA: We have been talking about repackaging content in CD ROM form. We have been thinking about how to harness telecommunications, whether it is through the internet or through some other method.
That is also very expensive. So, trying to find agencies that are willing to put up the money to allow this to occur has been difficult.
I know there has been interest in HHS, but not when you dig into your pocket kind of interest; interest at Interior but still not deep pocket kinds of interests.
Because the needs right now in the jurisdictions are great for the Pacific, I would focus on specific needs. I would do short term.
DR. IEZZONI: So, training the coders.
MS. WADA: Yes. I know it doesn't help them in the long run, but all of us who don't live in the region cannot really help the jurisdictions in the long run. They have to do it themselves.
Although we talk about integrating with colleges and helping colleges fill that need, you can't even start at the college level.
You have to go back into first level education. That is a really long term effort. Whether or not we can do it, I don't think so. I really don't think so.
DR. AMARO: With your sobering comment, let me just say that you kind of remind us that in each of these areas we are probably not looking for hundreds and hundreds of people. You are looking for a limited number of people who are trained to carry out tasks that are pretty specific to your health department.
That at least helps us feel less overwhelmed. There is something we could do. It is true that all of these situations are very much in the context of larger economic and political issues.
But if we look specifically at what are the tasks that the health departments need to move forward, then it does become more manageable and doable, and there are suggestions and steps that we can suggest.
They won't resolve all the other problems, but at least it will help the health departments to move forward.
MS. WADA: Denise mentioned the field epi training and what was the other one, decision making. We have an epidemiologist out there funded through the immunization program, and we have a public health advisor in the field.
Both of them are stationed in Pohnpei in FSM, but they are not really utilized outside the FSM. Their reason for being out there is to do capacity building, in planning, in systems development, in doing surveys and training counterparts.
MS. SABLAN: Amato, you never advertised this.
MS. WADA: No. Your directors and your ministers know. We are going to go to CDC, the three of us, the health advisor and the epidemiologist and myself, a few weeks from now and actually talk about the plan that has never materialized.
They are resources that are not well used. They are not well used for another reason, too, and I think the message has not gotten across the CDC very well.
You have two people who are covering this huge geographic area, and it just doesn't work. We have asked for two epidemiologists and we were lucky to get one. It would be nice to have a second one or a second public health advisor, doing the same kinds of things.
DR. KOO: My understanding is that -- at least I was chatting with Amato a little bit about this -- is that the epidemiologist was funded by one particular program at CDC.
Therefore, my sense is that they feel obliged to spend a lot of time on immunization.
MS. WADA: No, I worked out the contract for his billet. Although part of his time must be focused on immunization -- and you have to be kind to the person who gives the money or the program that gives the money -- there is enough leeway for him to be doing a lot of other work.
For example, in the Marshall Islands, they are undertaking their leprosy initiative. We have wanted to get the epidemiologist out there, actually, to help in that area.
That is fine with people in CDC, but how do you use his talent in other places, in Saipan, in NMI, in Guam, if Guam needs it, in Palau, since you lost your epidemiologist.
In regard to health planning, just one more thing. Palau has a division of health planning. The minister, when he came on board, actually created a division, but you have never been able to recruit. That is a different issue altogether. The Marshall Islands, too.
DR. IEZZONI: Joe, maybe, because you are right on site with this.
DR. ISER: Well, not on site.
DR. IEZZONI: Well, closer than most of us.
DR. ISER: One of the things that we discussed at the HRSA AAPI meeting three months ago was working with HRSA specifically, the Bureau of Health Professions, to look at some flexibility with BHPR programs and training.
This might be something to again take back to HRSA. They can only fund people to go to accredited programs, but maybe we can look at some flexibility in providing training to the University of Guam, for example, to develop a program in statistics or analysis or decision making, along with CDC.
This is the perfect opportunity that we have with the AAPI initiative right now, for all of us to work together to try to establish some of these kinds of issues.
We will certainly give -- Kevin Thurm would probably be happy with these kinds of programs and the interoperative, working together kinds of arrangements that we can forge.
The other thing is the collaborative program that Bruce Grant and SAMHSA has set up, which does and will do training that will involve statistics and a variety of other things, in mental health and substance abuse.
Maybe HRSA and CDC can put a little money in that, to help them cross train the medical officers and nurses and other people that they will be training. So, this is a perfect opportunity for collaboration.
DR. IEZZONI: You are coming up with good solutions, or suggestions -- I can't say solutions. There are a number of other folks.
MR. SCANLON: The Interior Department -- and Roylinne, you are familiar with this program -- has a training model. They have supported the Census Bureau for different kinds of training.
In one model, it is sort of medium term training where folks from the territories can actually come in and spend some time at the Census Bureau, get associated training as well, and it is capacity building oriented.
Then occasionally, the Census Bureau folks go out there as well. How has that worked, and is it a reasonable model to think of as well here, in the health area?
MS. WADA: I am sorry that Rich isn't here. When I was not with Interior, I thought the model worked very well for people in departments of commerce or OPS and FSM, who worked at the broader layer of trying to do population estimates and counts and household incomes.
I didn't see the trickle down effect in my agency. Vital statistics, I think, the health people have been brought up, and I think you can see good outcomes from that.
It is not where everybody would like it to be from the jurisdictions, but certainly there is movement up. So, yes, it is an applicable model because it is working at the first level and also the mid level, but not trying to do too much at the top. You are not a puppeteer. You can't just move things around.
DR. MICHAEL: May I make a comment that is directly related? What the IMPS training -- we have all been talking about IMPS, and we were all together in Hawaii when we did the IMPS training.
What happened with the Virgin Islands, and maybe with some of the other islands since that time, we did the initial training in 1992.
Since that time, Mike Levin and a couple other folks came down to the Virgin Islands, and the training of trainers thing sort of kicked in.
I was involved with the delivery of training some of the folks in the Virgin Islands. So, we actually did on-site IMPS training in the Virgin Islands.
I was actually able to bring in folks from the department of health to get that training. So, now in mental health, a lot of their forms, actually they are using IMPS also, the chronic disease program.
We also brought in folks from the police department and other departments -- actually, we had two classes, one in St. Thomas and one in St. Croix.
On St. Thomas, Frank Mailles, who had gotten training in Hawaii, too, he did some of the training. I did some in St. Croix, because that is where I live, and then the folks from Census did the other part of the training.
So, that worked out actually really well for us. We were able to get a class of 10 or so folks trained.
DR. IEZZONI: That sounds good.
MR. HANDLER: I have a suggestion for planning. My agency runs hospitals and health centers, but they are very small.
A hospital, for us, is like 15 to 40 beds and a health center is a pretty small facility. Some of them aren't even working five days a week.
The people we serve are in very remote locations and they have high incidents of certain types of diseases.
It seems like the type of people that we are serving are very similar to the type of people in the outlying areas.
Now, we have 12 area officers. Each one has a planning officer. The planning officer has the responsibility to see whether there is adequate hospital coverage, whether wings should be expanded, whether a new health center should be built, whether there is adequate staffing. It is the day-to-day running of a health program.
Now, the suggestion I have is, maybe what these 12 people are doing in our own agency, they can help people in the outlying people here, use the same logic, the same reasoning, the same methodology where appropriate.
There could be an exchange of methods or maybe one or two weeks they could be detailed to go somewhere. We would have to clear it with the appropriate people, but maybe for a week or two there could be on-site training. These are people who deal day to day with these types of problems, health planning problems.
DR. IEZZONI: So, using the training capacity that they are doing?
MR. HANDLER: Like on the job training, except our people would go on the job to the outlying area for a week or two.
MR. UELE: As I mentioned, on our island, as far as data analysis, we don't have any data analysis capacity in our office.
We do have a planner and I don't know how long he is going to be on board. That leaves us with no planner and no data analysis person. He is doing everything for us, data analysis, planner, on and on and on.
So, if you asked me what to suggest or what I recommend, if I were to look for somebody to replace him, I would probably first advertise inside house, in the hospital, for that position and see if somebody wants to get out of some position and move over there.
If nobody is interested, we would advertise it publicly, to start out with, with the requirements for that position.
If I get how many names, then I have some selection. Then where you can help and we can put our resources in to help out in that, that is just a suggestion.
We do need a person to analyze that data. The job I gave yesterday, everybody is analyzing his or her own data. I don't know if they have any background in analyzing all of this.
They are getting messages from everywhere. If we had one person who would deal with this little place over here, you would probably get the same message every year.
MR. ELYMORE: You don't need data analysis just for births and deaths. Just organizing our certificates for births and deaths with the IMPS would take care of all the analysis you would need from births and deaths.
The problem for the under-reporting, now I know that I have two epidemiologists, that they can help me. So, some post-surveying is the area that I am needing, so I will know how much has been covered, which areas are more, so I can prioritize where I can intervene.
DR. IEZZONI: That is a very good point.
DR. ROUSE: SAMHSA has a collaborative initiative. The model that is related is building on local forms. One of the issues that I hear coming up, and having worked in a rural area, I have had a lot of experience with this, and you have only one coder, one epidemiologist and only one data analyst. They are very isolated.
What we found is by having you come with brown bag lunches or forums, having people in the system that are doing related jobs to come together and hear the concerns and what is happening, it has a lot of benefits.
The coder has a lot of concerns. Besides, they want to be an analyst. You have a very educated data analyst who knows about the quality of the data.
You also find out what is happening in the different parts of the system. You hear more about quality, issues that are concerns of data analysts. The coder hears about the concerns of the analyst that they have to pay special attention to and they take greater concerns about them, how important the quality is, because they know somebody is going to use it.
The health planner has a better sense of how much the data is available and how useful it is and where the gaps are and how hard people are working to produce the data and to use it.
People have a sense of community in the health professions that you don't have when you are working independently in your little cubby hole.
You would be surprised how much people can share their information and inform each other, and how much on-the-job training when you use that community educational experience.
It can be done, as I say, as a brown bag. In North Carolina we used to have evening forums for the social workers and researchers and physicians and psychiatrists and community advocates.
They would come together and share their concerns, and the quality of the data increased, the responsiveness in the communities to surveys when they were being asked to respond increased.
There were a lot of benefits that came from that kind of approach. It was an endogenous model and people had a sense of ownership.
That is the SAMHSA way of doing things that other people might want to consider. It doesn't mean that you have to put out more dollars, because we don't have many dollars. We have to utilize the local talent.
You would be surprised how much talent there is on the local work force.
DR. CARTER-POKRAS: I was just thinking about the Johns Hopkins new certificate in public health program, where that perhaps would meet the needs that Roylinne said.
You have got somebody who is currently working with the data systems and is needed there and you don't have somebody who can step in there and replace them.
This is internet based. That means that they can actually accomplish their learning if they do have access to the internet.
I didn't know if this is something that would fit HRSA's need of only funding -- you had mentioned before about -- I know you are not HRSA, but you seemed to have some knowledge whether this would fit HRSA's needs to only fund U.S. programs.
Hopkins is certainly a U.S. program, and perhaps there are other schools of public health that offer similar programs.
DR. IEZZONI: Michael, do you have any comment on that?
MR. BROWN: I don't know enough details. I am only in a small corner of the agency. I know there is a meeting coming up where some of these issues of cooperative --
MS. WADA: I think the Bureau of Health Professions is now re-looking at the issue of scholarships, only in U.S. based institutions.
DR. IEZZONI: Would internet access to a U.S.-based institution qualify then?
MR. SCANLON: It would, yes.
MS. WADA: We have never even talked about that.
DR. CARTER-POKRAS: Actually, this is a very new program. It just started this year. They have students throughout the world.
DR. ISER: The nurse leadership conference uses it once a month. There is no reason why that can't be used for other kinds of distance based learning leading to certificates and so on.
The University of Hawaii has just developed a telehealth certificate, but it is on telehealth applications. There is no reason why we can't use that more.
Indeed, everywhere does have access -- not everywhere. The main islands have access to internet, although it may be very, very expensive for them.
DR. KOO: I wanted to respond a little bit to what Roylinne raised about the need, and also to this issue of distance learning.
I think the question of capacity building also relates to actually, as people pointed out, using the data.
I think the combination, potentially, of some sort of distance learning, I think the point about project, surveillance or whatever, where you are actually then applying it in your area, and then having perhaps this advisor, have him hooked into the whole approach to training, et cetera, so that he can then advise people, whether it be over distance or whether it be in person.
The question of CDC in terms of this, I think it is an interesting question of a mandate. How important is it to the U.S. Government to make a statement that it is important to spend time in this area.
The people who run the FPTC(?) for the CDC and they are all over the world. Right now they are in Spain, they are in Pakistan, et cetera, et cetera, but there isn't one in this area.
My assumption might be that it might help to have a statement of interest and commitment that it should be done. Then they will make the connection better and you can make the connection to our FPTC program.
DR. IEZZONI: That sounds good. Roylinne, do you know anything about the history? Has this ever been proposed before?
MS. WADA: Yes.
DR. IEZZONI: I figured you might know. Can you speak into the mike and tell us how we might articulate this to have it be listened to?
MS. WADA: It is a matter of a policy that is broader than CDC, but it is also internal to CDC, and I can only speak internally at this point in time.
CDC can't figure out if, if you are talking specifically -- I am not talking about the Virgin Islands or Puerto Rico -- if the Pacific region is domestic or if it is international.
You can send your advisors out to Pakistan, Russia, Uzbekistan, you name it. Every time I turn around, somebody I know is off somewhere.
You can't do the same thing within the Pacific region because they are not international, so they don't have that political pull.
DR. KOO: I think you are making a good point. It is very difficult. It is funny. When I was running the notifiable disease system, I found a letter from over 10 years ago that says, these are associated with the United States and you should publish this data.
There is this question of not wanting to push the territories because of the fact that it is very difficult for communication and training and surveillance is voluntary.
We are not having enough resources. We barely -- in fact, we don't have enough resources to service the states, the continental United States.
To be traveling across the world and getting the justification for that, it is very, very difficult.
DR. IEZZONI: So, when you travel to places like Pakistan and Russia, they pay for it?
DR. KOO: No.
DR. IEZZONI: You pay for it?
DR. KOO: It is out of a different sort of, international -- right now, NIAID has it.
DR. ISER: One example, I think Frank -- what is Frank's last name; he is now in Egypt -- Frank Mahoney was going to stop off in Pohnpei at a PIHOA meeting on his way out to someplace else, and CDC wouldn't let him, because it cost too much money or some other reason.
I am not trying to blame CDC. There are all these internal reasons why that can't happen. But that meant that, at that meeting, CDC was not represented.
DR. IEZZONI: Actually, this is a good segue into something that I would like to move into while Jim is still able to be here.
Let me just give you an advance notice of how I think the rest of the meeting is going to play out. I think we are going to have lunch maybe around 1:00 o'clock.
I have been alerted by some of the subcommittee members that people are going to start leaving. So, I think we are probably going to have a quorum problem around 3:00 o'clock.
What we will try to do is wrap up by 3:00. So, that is just to give you a preview. What I think we will do is probably only take 45 minutes for lunch. We all know what is waiting for us upstairs anyway. We could maybe even take half an hour, although that might be pushing it. If I say half an hour, it will be 45 minutes.
Why don't we move into this issue of fragmentation, which is specific to programs within HHS, which we heard a lot about yesterday.
Also, some of your jurisdictions are doing projects for WHO, are doing projects for UNICEF. Obviously, some of the approaches are going to be different for some of these different funding agencies.
It begins to be a real problem for you to be collecting data in different ways. Also, within some of the programs that, for example, Denise might want to talk a little bit about this, that have different reporting requirements, that don't necessarily talk to each other.
Denise, do you want to give us a little sense of that? This is an area where I think we need to make a recommendation.
DR. KOO: Sure. As I mentioned yesterday, due to the nature of CDC's funding, we have categorically funded, in the past, in order to help facilitate the collection of data, the individual programs, particularly the programs with money.
They built these surveillance systems to try to gather the data to try to help the states. With HIV, we had a lot of concerns about confidentiality issues, so they built the HIV/AIDS reporting systems, STDs, TB, and so forth.
Our system actually, in our division, was built on a standard and not on a specific software. That one has never been fully funded because it wasn't really categorical. It didn't have STD, TB, et cetera.
Over the past decade, at least, I am sure, the states have been complaining that this proliferation of systems is just not workable, particularly because, as you become more and more interested in more and more data and behavioral risk factors, that mean that fewer people need to put it in more software.
So, the CDC, a couple of years ago, formed a health information surveillance systems for functions like the data council at the CDC level.
In the last year they have made a commitment to actually integrate several of our major systems, particularly the ones that are categorically funded.
About last fall, they actually took money from each part of CDC and committed to an actual project that will integrate HIV, STD, TB, major ones that actually are funding in this area, notifiable diseases, and some of the new emerging infection activities.
We are starting with infectious diseases, not because other programs are not important, but because of the fact that they have been in existence for the longest period of time.
Their data needs are the most well defined. They have these systems where they already have software, et cetera.
It is really very timely because a lot of them are DOS based. We are all thinking, what do we do next. The states are asking us for the Windows based version of any applications.
We are at the point where we don't want to build new independent ones. So, we are trying to work together to at least build a registry of the system or somehow, so that you can actually get information across all these systems.
That is a collaboration with the states. Again, one of the issues, one of the difficulties with trying to get collaboration with the territories is the resources for traveling people in or communicating.
We have made that commitment and we have made the commitment to use standards and not require the use of specific software, although the states have also asked us to continue to supply software for the states that actually can't build their own. We are always in that situation of having to do a little bit of both. I can answer any questions about that particular process. It has various components.
DR. ZAMORA: There was an announcement on the internet about the integrated health information systems in CDC.
We sent a letter because we were very interested in that area. The first thing they told us is there is no extra money. You have to use the money from the categorical programs.
You know, I called everybody and they said, well, my budget, I have no extra money for you. We will have to figure out how to try to do this project. I don't have extra money. I have budgeted everything.
The intention is good, but there won't be any extra money. We have to re-think our budget and we have to re-allocate monies for this integrated health information system, which we desperately need.
We have to use the same budget that we had before this project.
DR. KOO: To respond to that, what you are referring to is something that I mentioned yesterday, the investment analysis.
That is exactly right, where CDC and HRSA partnered to make a commitment that you are basically allowed to redirect funds.
That is a point that we are very, very strongly in favor of, which is pointing out that it takes additional resources to integrate.
What we have currently is enough money to run our current systems. To actually then integrate them takes additional resources.
Actually, CDC has put forth a budget initiative asking for additional resources to integrate our systems, because of the fact that if we just rob Peter to pay Paul and redirect, then we can't do as much.
DR. AMARO: And it is particularly a problem when there is already a cap and there is already such stress. Maybe that is an area where we could make a recommendation about both supporting the CDC proposal, that if we are really going to integrate systems, that we really need funding quick.
Also, stress the issue that when there is already a Medicaid cap and data systems funds are made available, that they shouldn't have to come out of that, and make that recommendation.
That really keeps some areas from participating. It is as if the training wasn't available.
MR. HANDLER: One of the things I have heard several people say is that there is a funding problem in travel. I know that several times commissioned corps people have traveled on military flights.
I don't know if there is any exchange of money when a commissioned corps officer travels on a military flight.
I know my agency has picked up a lot of resources from the Department of Defense when bases are closed down. We have gotten supplies, equipment, computers, whatever.
Maybe the Department of Health and Human Services can work something out with the Department of Defense, to allow civilians as well as commissioned corps travel on military flights. There must be military flights going to Guam and some of the other places in the outlying areas.
DR. ISER: As a commissioned corps officer --
DR. IEZZONI: Joe, is this something that we might want to recommend?
DR. ISER: No. If I go to Guam on leave, it costs me $10. If I go to Guam on travel orders, it costs me commercial rates on the military transport.
Can I cheat and lie? Yes, but I don't think that is what a commissioned officer should be doing. So, it is really difficult to do that.
We are supposed to pay commercial rates to DOD if we are traveling on travel orders, if we are doing it as an official duty.
I think that is very difficult. Remember, the military flights generally only go to Kwajalein and to Guam, although that is very helpful for the Pacific.
We do have a project for surplus equipment going on right now with DOD and Humanitarian Systems out of the state of Hawaii.
We hope -- we keep promising that it will bear fruit within the next six months, but that is what I would say now, too.
DR. IEZZONI: Let's hear from HRSA on this fragmentation issue.
DR. MONTOPOLI: I have been sitting here trying to think about what the organizing principles are for all of this.
We have heard training, but we heard training, very different types of training arrangements all over the map.
We have heard technical assistance delivered, we have heard infrastructure, both software and hardware kinds of issues.
We have heard all sorts of issues around how priorities get set, about how problems are actually going to be working.
You can't do all of that all at once. You could wind up in the situation of sort of funding training but not knowing exactly what you are funding for.
Clearly, each of these places have different strengths and weaknesses and different problems. I think there needs to be something like a process or investment guide.
I have been concerned about -- we have been having other conversations about Medicaid and vital records. I am concerned about the lack of resources for engaging in the whole process of thinking through, if I am going to make a marginal new investment in information, where am I going to put those bucks.
Really, those bucks are going to be limited. So, it seems to me that the first step needs to be some investment in the process of thinking through the most important things that need to be done and kind of in what order.
Perhaps, just lay on the table, the committee might suggest some funding for the investment guide process.
There is a framework now to dialogue in a systematic way with the agencies that puts together the training and the information infrastructure and data sources together.
It may well be that engaging in some systematic process may be the best first step. With limited resources, I think you have to think about what are the most important first steps that one could take, that the agencies could actually find doable.
DR. IEZZONI: Michael, I think that is a really good point. I think we are putting up a scattershot list of recommendations.
Because the committee is going to be kind of scattering to the four winds this afternoon, I think what we are going to have to do is set priorities.
We will have to review the transcripts of this meeting, look at all the flip charts that Lynnette is putting together, and come up with some list of priorities that we will bounce around with other folks.
It may be early this fall before we finalize our recommendations. Denise, do you have a response to that?
DR. KOO: Actually, one thing that it makes me think about also is, we are starting to define this field. As you pointed out, it is multidiscipline and it has to do with data.
I don't think that you would want to separate the science of data and the use of data from the information technology.
We are starting to use the word public health informatics. One definition could be -- I think it picks up on the words, systematic application of information science and technology to public health science and practice, or public health research and practice, that we are using currently.
We do have a fledgling -- a very fledgling, but a fledgling public health informatics fellowship. Again, it gets at this idea of training and capacity building, and having people be involved in projects that implement the knowledge that they are getting.
I think, again, the problems that we are talking about, as has been mentioned over and over again, are not unique to the territories, although they are greater because of the distance and because of resources.
The states are asking us for this all the time. They are requesting epidemiology training, regional training programs.
They have been requesting informatics aids, that we have been having these discussions about. Can you help us link these data. Can you help us with that. Can you work with our laboratory data.
We don't have the resources to do that, but people are very interested in that issue, and it is happening all over the country.
I think that it could also be beneficial, but it is still early, these kinds of programs.
DR. IEZZONI: I do have to bring in the fact that the public health information infrastructure is really crucial, but so is the health care delivery information infrastructure, that will have to cross walk with that in certain ways.
That is why I do have to bring up HIPAA again, as I did yesterday, the Health Insurance Portability and Accountability Act.
I don't know if you were here yesterday, Jim, when we were kind of trying to get a sense around the room if people were aware of the electronic data transmission standards through HIPAA.
It doesn't appear that there is necessarily an awareness, although there is also the possibility that the right people aren't here at the table and that there are people, for example, in Puerto Rico and the Virgin Islands who are actively working on this.
I think that trying to develop some sort of way of educating and informing people in the territories, not that tomorrow you are going to try to set up a massive health care information infrastructure, but just so you realize that a year or two, three, 10 from now, when you are thinking about doing some of this maybe even in your most distant regions, that there are standards that people have already developed that, in fact, are mandated federally to be applied across the board in both public and private health care transactions in the 50 states.
MR. SCANLON: I think that may be. HHS has tried to deal with this fragmentation program for many years. Better folks than I have tried, including assistant secretaries for health. It is a very difficult thing to do, given the historical nature and the categorical nature of a lot of these programs.
In a way, you are almost better to plan a generation ahead and focus on some standards issues and focus on those, rather than try to unravel the thicket for some of these categorical programs.
I think Lisa is correct. I think we actually have the potential, with this HIPAA legislation, for standards, really to help get over that, help standardize some of the reporting in public health.
I think CDC is committed to any changes that it makes in its own systems, integration, standardization, to conform to these overall standards as well.
I think moving forward to this new set of standards may take a while, obviously, but I think it will be a tremendous resource for public health, too.
There won't need to be as much specialized public health reporting, to the extent that we can rely on mainstream health care reporting as well. I think what is separate public health reporting will at least be standardized. Again, that is a few years ahead.
DR. KOO: Certainly that is our point, too. I think Lisa has raised a really good point. The idea is that we are forward looking and there be seamless -- it sounds so forward looking, but seamless data entry, wherever it gets entered, because we do have standards to glue them all together.
I would have to say that the reaction you got around the table is similar to the reaction that we get when we talk to the states.
DR. IEZZONI: Oh, absolutely. We know this. We absolutely know this. It is just that in this room now we are talking about it.
I guess the thing that I wanted to ask the people from the jurisdictions is, what would be the best way for you to learn about HIPAA.
What we are talking about here are frankly things -- Jim, I hate to say this -- that kind of make me fall to sleep a little bit, because we are talking about very arcane electronic data transmission standards. Maybe you can make it more exciting.
DR. ISER: Just to remind you, the freely associated states are not affected by our laws, so you are only talking about five.
DR. IEZZONI: I am not talking about even having a mandate. It is just that these are international. That was the whole point.
A lot of the basis for the choice of the HIPAA standards was looking at what Europe was doing, looking at what other countries in the east are doing.
So, the whole point is that there is a global information infrastructure that is getting set up. So, I am not in any way implying that there has to be a compliance because of American regulations, but that the standards are truly --
MR. SCANLON: They are really leaning toward -- I mean, this first wave is somewhat United States oriented, but obviously the whole movement is toward international standards, and I think ultimately we will be there.
Lisa also raises the point of communication. There are a couple of web sites set up. Maybe you have some advice in terms of how we can include communication, so that if you have internet access, you certainly could get that going, in terms of what is on the horizon, both in statistics and standards and in privacy. Maybe there are some other ways of communications as well.
DR. ZAMORA: I think that with HIPAA and ICD-10 and Year 2000, it is like cry wolf. You know, it is coming, it is coming, but nobody knows what is going to happen.
I have been so worried about HIPAA. We are under health care reform, but we still have the Medicaid data base and we serve Medicare patients, so we have to comply with HIPAA.
Every time we have a chance, I talk about HIPAA in every meeting I go. People stare at me and say, what is this lady talking about.
The first time I read something about HIPAA, I read it like four times because I didn't understand what they were talking about, because it was so complicated.
I am not sure if I am asking for a piece of the moon, but can it be presented in a simple way? After you understand what is behind it, it is not that complicated. To get there, it takes you a while.
MR. SCANLON: Do you have any suggestions?
DR. ZAMORA: Like the ten top reasons to comply with HIPAA, or something like that. I think that would be a great help to everybody.
MR. SCANLON: Maybe you can advise us, too. We have material written more or less in press release form or fashion, which may be a little more helpful.
We sort of use the web site as the place where the most information is available, but maybe we can use that type of information.
We also have tried to notify most of the state Medicaid directors, virtually everyone in a state government that would be affected. If you can give us any others --
DR. ZAMORA: For us, we treat Medicaid different from the states. We have some idea of how we have to comply, but we are not absolutely positively sure that we are doing it the right way, because it is capped and it gives everything to the state, and then we have health care reform. It is complicated.
MR. SCANLON: Any suggestions you have for, as you say, getting this information to the right folks.
DR. IEZZONI: Marjorie, you think about this a lot.
MS. GREENBERG: I feel compelled to weigh in a little bit here. I think that what was coming out overtly this morning, but I kept thinking about it yesterday, is that everything that we have heard about the issues and the problems, as well as the successes and the positive aspects, but they so much mirror what is going on in the 50 states.
There are some states that are very far ahead and others that have many of the same problems, and if you close your eyes, you could be hearing from one of them.
I hope in this context that the subcommittee will think in terms of how some of these recommendations might relate back to some of the recommendations that were made by the subcommittee on state and community health statistics.
There isn't such a subcommittee any more, and with the reorganization of subcommittees, I am not quite sure where that responsibility lies.
DR. IEZZONI: Probably with ours.
MS. GREENBERG: Yes, but I do think that -- and I know you are already thinking about survey integration and issues with the BRFSS, et cetera.
I think that particularly if you can think of it in this broader context, you might get a little bit more receptivity from the data council and the department, where the needs for state data have taken on some new importance.
I just wanted to mention from the point of view of your remarks in particular, Dr. Zamora -- and I know that people's eyes do glaze over often when they hear about HIPAA, and even though we feel we have developed user friendly type of information, it is not to a lot of people.
I don't know whether this is something that actually you might be interested in participating in, but the National Center for Health Statistics, and working with the mother agency, the Centers for Disease Control and Prevention, has been thinking for some time about the implications of HIPAA for public health.
This has really not been high on anyone's radar screen because obviously just trying to implement it for the Medicare and Medicaid programs, and out in the rest of the country private sector insurance has had to be the first priority.
We are having a workshop in early November about the implications of HIPAA for public health and health services research, November 2 and 3, actually, in Washington.
We are working with a contractor, the Lewin Group, is working with us to put on the workshop. We are going to be doing some white papers related to these issues.
Also, part of what we have asked them to do is develop some user friendly materials that will emphasize the public health implications and be useful to the various partner organizations that we are working with.
We are working with ASTO and CSTE and all of the traditional CDC partners, plus health services research constituencies, and a very wide number.
If you are interested in that, I would think this is probably pretty far afield for most of the Pacific area groups here, but it might be of particular interest to you.
The materials that are developed, even if the workshop isn't of interest, the materials that are developed may be a little more pertinent to the relationship between the standards process in public health than what you currently have out there. That might be interesting to everybody.
I do think that right now the standards are pretty American based. They are ANSI standards rather than ISO standards. I do think that is an evolutionary process and that will evolve more internationally.
It sounds like you would be interested in this. I will make sure that I get that information to you, and anybody else who is interested, let me know.
DR. AMARO: One of my recurring concerns in the committee has been that this process would be inclusive and that we hear from very different types of providers and, in this case, very different countries and states.
As we look at developing standards, we don't just look at Europe. The majority of the world is not Europe. I wrote notes -- I don't know if you got them -- encouraging us to look at ways of looking at health data systems beyond Europe.
If we really want them to be international, we really have to look at the reality of most of the world. When we were hearing nationally from people, I was concerned also about the ability of smaller agencies and community health centers that aren't computerized or that might be very limited in resources to comply with these things.
I just really encourage us to keep thinking about that and to be inclusive in the training, in the development of standards.
I see it coming up here again. Just about everything we heard about yesterday hits on the issue of inclusion or exclusion of groups from resources or from training, the way things are defined. It just leaves people out.
I think in addition to specific recommendations to the Secretary, I think it would be very important for us to state a set of principles that we would encourage her to adopt.
The principles that have come up through our discussions so far are things like self determination, under which I put the issue of capacity building at home, and facilitating that, the issue of inclusion so that -- for example, she might develop an initiative to request of her department heads a work plan on how they are going to integrate islands and territories in all the public health activities, and ensure that training, prevention initiatives, development of data systems, technical assistance will include or at least, to some extent, address the concerns of the territories and islands.
I think that there is kind of a system problem where we sort of haven't thought about it or it is always left out.
Then we need to think of specific projects and approaches and then the response is usually, well, we don't have the money for that.
If we try to integrate the issues throughout the system -- and we have had a lot of examples this morning of programs that exist already that might be able to address some of the issues and might have to be adapted to the specific need.
If people were integrated more, and that was facilitated, we might be able to address more systematically a lot of things that we have been addressing.
I would like to, maybe when we come back from lunch, spend some time thinking about what are sort of principles that we would recommend to her.
I think that, in addition to specific recommendations, there is sort of an approach that has to change and a perspective.
People have to be brought into the fold. That means that there is a direct philosophy that has to come from the Secretary that encourages and rewards administrators for doing that, including this in their work plan.
MR. HANDLER: One of the things I did this morning was drop off at everybody's table these three reports that my office puts out.
Basically, the idea of leaving it with you is to show it back home as an example of what could be done, just with birth and death certificates, the standard birth and standard death certificate.
The first book shows trends over time. It goes all the way back to 1972. It shows how a program is getting better or possibly getting worse.
Tracking regional health status objectives, there are 20 different objectives from the Healthy People 2000 report that are tracked using birth and death certificates.
That is what this is, and shows three year rates over time. One of the problems that we have is small area data for small populations.
Whenever we present data, we show a three year rate, three years of births divided by three years of population, or deaths divided by three years of population.
Then the third report is what we call regional differences in Indian health. It is at the same point in time, but they are different geographic areas, so we could relate one area to another, how one is better, one is worse, that type of thing.
Basically, what I had in mind was for you to take this back to your supervisors or higher ups, and show them this as an example of what you could do as well, if you had the staff and the resources and everything else that is needed.
Basically, these reports were put out by three people and that is all, a statistician, a computer system analyst, and then someone who is like a glorified secretary, who just types with a computer.
It looks very fancy but really, it took three people, is all it did.
MS. FREEDMAN: You have to say that it is supported by vital statistics --
MR. HANDLER: If it wasn't for NCHS, we wouldn't have it.
MS. FREEDMAN: Not NCHS, but all of the states and special groups of Indian populations within those states.
DR. IEZZONI: Thank you, Mary Anne, for making that point. It is not just three people. I was going to mention those reports before lunch, and also mention that Olivia brought copies of this volume.
DR. CARTER-POKRAS: Dale Hitchcock has already offered copies, if you don't already have a copy of Health United States.
This is the annual report to Congress from the Department of Health and Human Services. It does have some data in there, for instance, from Puerto Rico on life expectancy and infant mortality, but in general, it focuses on the 50 states and the District of Columbia.
This is part of the reason, using the national goals and objectives in Healthy People 2000, which you have a copy of -- they have already been passed out, and also Health United States, we didn't see Puerto Rico, Virgin Islands and the U.S. Pacific Islands.
That generated the interest and the need for having this meeting. We greatly appreciate those of you who traveled long distances and took significant amounts of your time to be here.
DR. IEZZONI: Thank you. So, that is available for folks, if you would like to carry that back with you, too.
Why don't we take a half an hour for lunch. We will be a little flexible on that. When we come back, we will address Hortensia's concern about basic principles to guide our recommendations, and try to wrap up maybe by 3:00.
[Whereupon, at 1:05 p.m., the meeting was recessed, to reconvene at 1:30 p.m., that same day.]
DR. IEZZONI: For people who are from near the equator, this is going to feel like home. I was interested to see in the Virgin Islands, that they don't get much rain. In our briefing materials, we were reading about that.
Before we start with this afternoon's discussion, Denise Koo was just talking to me about some materials that she can make available to you from CDC. Denise, do you want to just say a few words?
DR. KOO: Sure. I will just mention that we actually have a web site and it is accessible off the CDC web site.
So, if you go to CDC to EPO, which is my center -- epidemiology program office -- we have made available on a public health surveillance web site -- or you can go through my division -- slides about public health surveillance.
They are available through the internet. They are more for educational purposes. We made them available to the states.
The case definitions, this publication is actually available there and we actually have each individual case definition available as an individual HTML page.
The annual summary is available through there. You have to use really available software, acrobat software, to download the entire thing.
You probably don't want to download the entire thing through the internet because it would take a long time, but we also have the individual graphs available there and the data that is published, and the MWR put up there each week as well as an informational brochure about the notifiable disease system.
If people want hard copy, they can also just e mail me, or give me your card or something and I can get it mailed out.
DR. IEZZONI: That is great. Hortensia and I were actually talking during the break and I would like her to lead with some of her recommendations.
Hortensia, you had thought through a series of kind of comments and recommendations that might frame the last hour of our discussion together.
DR. AMARO: I thought maybe we could have just a little discussion on the issue I brought up before lunch about perhaps, you know, heading the letter to the Secretary might be a number of principles that we think should guide the department's action related to these issues.
We talked about a couple. I mentioned self determination as a guiding principle. From that would flow things like building capacity as opposed to bringing experts in to do the work, who then don't build capacity, doing manpower development and training, things like that, infrastructure development.
Then the second principle was the principle of inclusion, inclusion of these issues throughout the department's activities.
Out of that might flow a specific recommendation, for example, that the Secretary ask -- I am not sure how we would frame this.
The idea would be for her to ask the heads of all the different departments, in their work plans for their agencies, to include ways in which they are going to integrate these principles of inclusion, self determination, related to the islands and territories, for example, in the public health initiatives, how would that be done.
So, they have to articulate activities and ways of including, in areas of training, of data systems development, of technical assistance.
That would be a recommendation that helps us try to shift everybody's thinking from all these places are too far away to how do we start building it into what we do. That was one.
The other one, the other recommendation that I wanted to float and see how people felt about it was that it seems very clear from the discussion in the last two days that a lot of the issues we hear about have to do with capacity building and infrastructure development.
There are lots of good ideas about targeted things to do here or there, but I think somebody said this morning that unless you sort of deal with infrastructure and systems issues, you are going to be putting band aids and, really, the effects won't last.
Perhaps what is needed -- and it might need an initiative from the Secretary, to develop a source of funding that territories and islands can apply for, that would be specifically for capacity infrastructure, development of health data systems, and personnel.
One way in which this might work is that territories and islands can develop a grant proposal in which they describe what the systems issues are now, the steps they would take to address them and then a budget that would be needed.
These grant dollars would be targeted specifically for that. There might be an evaluation to look at, well, did it work, what impact did it really have on the health data system, so that she can assess these over time.
Those are some specific suggestions that I wanted to bring up for the group.
DR. TAKEUCHI: I don't have any specific recommendations per se, but I just want to support what Hortensia is saying.
From the discussion, I think one of the strongest parts of our discussion can be this opening, or principles, that we set forth.
I think the Secretary needs to make a commitment or a renewed commitment to each of these areas, that it is not your problem, but it is all of our problems, to try to resolve these issues related to data and data quality, so that we can enhance the planning for programs.
I think it is akin to watching someone who tells you about their problem and you kind of say, that is interesting, and you move on.
When it is a family member, or it is a friend, you want to say, well, let's solve that problem.
DR. AMARO: I forgot. There is a third point to the principles that we talked about, and that is the issue of social justice and equity.
There are lots of things that could come from that, but particularly the equal status of U.S. citizens, that we really have to move away from this perspective of policies that, in effect, give people secondary status.
That may be beyond what the Secretary can do, but we felt that it was an important thing to state.
DR. IEZZONI: I think that needs to be one of the framing, initial principles.
MR. HANDLER: My agency is basically in the throes of this type of activity. We are working under a legislation called self governance.
An Indian tribe, if it decides to, can take over the operation of a hospital or a health center. Now, in order to get to the level of being able to do that -- part of it is program planning and statistics and the actual operation and administration.
In order to get to the point of qualifying to take over the operation of a hospital or a health center or a health program, there is training that is given to the tribes to bring them up to the level that they are able to do that.
There are regulations in place and procedures in place and outreach. Basically, you could use what we are doing as a model, to set something like that up for the outlying areas.
Just take a look at it, see what applies, what should be strengthened. But basically, we have gone through that already and we have something working and it has been in operation like four or five years.
We have a track record and maybe a third of our program is being run by tribes, where we used to do that work ourselves.
DR. KOO: I wanted to ask whether, Hortensia, whether the group wanted to extend, actually, even one of your principles, when you are talking about inclusion.
There is a problem, when you make available grants, even for health data systems. The states have been asking for that.
We have an initiative called the assessment initiative that was run out of our division. We put money out there for states to compete for, for linking data, making partnerships, for facilitating use of data for decision making and policy.
The problem -- which is good and bad -- is that the rich states get richer. So, all the really hot states that competed for it got it, because of the nature of our process.
I don't know if you want to make a statement about set aside or that it has to be based on need as opposed to who writes the best proposal, and how to deal with that issue.
DR. IEZZONI: Lynnette, in scribing these, could you just say what that program is again? What was the name of it?
MS. ARAKI: The assessment initiative?
MS. WARD: I certainly agree with the principles. I want to get beyond the principles, because I think that is where we may or may not make a difference.
What really has struck me has been the issue of the Office of Insular Affairs has been very well aware of the deficiencies for a long period of time.
What seems to have been missing is a place to go with that collection to stuff to a point of authority, where someone actually as the authority to begin to look at the mingling of resources.
That is something that I have heard, that you are going to need $1,000 from this program, $1,000 from that program. Who can contribute to a pot of travel money?
To me, that is one of the ways I see perhaps some change in what has been known for a long period of time, to actually change to interventions.
It seems to me that I think Dr. Iser has continued to give us some very good points about, from where you have been sitting, you see so many of the deficiencies. But how do you land resources to solve those?
To me, it is a point of accountability after the principles are accepted, where is that point of accountability going to be, to say thanks for the work, wham, I need $2,000 to contribute to the travel fund for training. I think that is going to be critical to getting change.
DR. IEZZONI: Joe, do you have a comment about that? Even though you have just been in your position for four years, it seems that you know a little bit of the history of this.
DR. ISER: I think you are absolutely right. It has been very difficult. I don't want to go into too much of a historical perspective, but back when there was a Public Health Service, it was easier for all of us to work together.
Now that there literally is truly not a Public Health Service, that we are operating divisions, it is much harder for the former PHS agencies to work together.
I have talked to Bud Nicholl about this, and he agrees. Bruce does, and I am not so sure HRSA does, but I think that is true.
So, we really have to force ourselves to begin to think -- I hate using this phrase -- out of the boxes that we put ourselves into as operating divisions, so that we can do some of this interactive kinds of things.
People are trying to do that. That is one of the reasons that I encourage HRSA and CDC to support SAMHSA, and HRSA and CDC to work together.
The data initiative that you are working on is excellent, but we need to get people to really start working together in working groups between the operating divisions.
That includes the human services one, HCFA, ACF and AOA, to help to do this kind of thing. Little bits of money -- again, I don't know about the Virgin Islands or Puerto Rico -- but little bits of money can go an awful long way to providing some significant training and opportunities for Pacific Island jurisdictions.
DR. IEZZONI: How about cross cutting, though, with the Department of Interior and other -- Department of State. Richard, can you speak to that?
MR. MILLER: I mentioned before -- Joe mentioned before -- that one of the things that we do is we try to concentrate on training.
That has been mainly demographic, but we can and have moved trainers -- we find it more efficient to move trainers out to the Pacific than trying to bring people here in large numbers, maybe to a central place, like we have done in Honolulu.
I don't see this as any grandiose or long-term solution. For one thing, our technical assistance program is designed to be sort of one-time expenditures. We don't have programs as you get into providing the regular annual grant for training purposes or for the same thing year after year.
We don't want to get into somebody else's program, in other words. The long-term solution is for the various agencies to build training and other benefits for the islands into their programs and into their budgets.
Yes, we have some small short-term stop gap money available for things like transportation and training.
DR. ISER: One of the things that HHS used to have is what we called the Section 301 Pacific Basin initiative, which is very similar to what DOI can do, where we had both short and longer range funds.
That was rescinded by Congress when the Republicans took over several years ago. I am not blaming the Republicans, but that is when it happened.
Also, a lot of DOI's money got rescinded at the same time. OTIA's money got rescinded at about the same time.
Maybe a recommendation to the Secretary -- although am I making this or are you -- would be to reconsider something like a Section 301 Pacific Basin or Caribbean Basin initiative, so that we can help to look at chronic under-development and infrastructure problems, and can start to work together with our partners in DOI and with the operating divisions.
That was about $1 million, maybe $1.2 million a year. That really went a far year toward helping some of these issues in the Pacific.
DR. AMARO: That was for the Pacific?
DR. ISER: That was for the Pacific. It was called the Section 301 Pacific Basin Initiative.
MS. WARD: I think one other thought I had, probably not because of my work in Washington but previous to that, my 14 years in Alaska, and I had some sense of what it was like to try to provide services to the Aleutian chain, that was at least some perspective that I can understand for some of the folks here, there are infrastructure issues and there is the fact that you have to say some things have to be what we always called itinerant.
There is just simply no way that you are going to have infrastructure to the level that you are going to have in a city that you have to have.
Part of what I heard here was, again, no focal point where someone could say, that is the infrastructure pot, this is what everybody has to have. This is the consultation pot, that we could find some experts who really could provide the following kinds of things on an itinerant basis.
DR. IEZZONI: Talking about coding, for example, do you want to expand on that?
MS. WARD: One of the comments I talked to Lisa about is my experience with the kind of expertise that is needed to do nosology, death coding, you can't do it a couple of days a week. You can't do it a couple of days a month, to be proficient. It is like a laboratory or a surgeon.
You have to do so many of that activity to be proficient doing it. If you have 50,000 population, I don't think you can say, I demand a full-time nosologist. You aren't going to have enough deaths to justify someone being there 365 days a year to code deaths.
Surely you could have maybe an itinerant death coder who, for some part of those islands, who once a year or twice a year could show up and cover those deaths and keep proficient.
There must be other kinds of things that could fall into that. Strategic planning is another area. Information resource management, you have a few people who are really skilled at going in and getting people to put together two weeks of concentrated structure and planning and then figure out who are the people who have to carry out those plans, and come back and see if it is still working.
I think, again, you have got to have an office that is responsible for doing that kind of sifting of funds and coordinating, so that you can use the dollars really effectively.
MS. FREEDMAN: Just to follow up on the coding suggestion that was just made, there are a number of states that essentially function that way.
They do their own data entry into the software and they are good at interpreting what their physicians write. Their coding is either done by NCHS or by one of several contract firms that specialize in this kind of thing. That is another option.
What you lose there is having a nosologist on staff that you can consult with, that your statistician can consult with. That is the trade off.
You are absolutely right. There is a minimum number of records that a person ought to be coding in order to be proficient at it.
DR. MONTOPOLI: I just had a thought of the possibility of a public foundation. A number of the agencies have set up -- NIH has one, the Park Service has one, to do the kind of thing are talking about.
The reason these things were set up is because they needed to dip in, in sort of quick ways, and be able to merge funds together.
It may be possible to sort of develop something like this and also be able to get grants by the foundations and have some sort of centralized way of dealing with these cross cutting region-wide issues.
MS. WARD: I think the advantage to that, at lunch yesterday Nick was talking about one of the reasons that internet costs are so high is because you have AT&T as the single provider.
Perhaps if you had a foundation, AT&T would like to donate, because it is the only provider and it is charging you extraordinary amounts of money.
They might be willing to offset that by donating to a foundation that would help provide. Or there would be a collaborative way of working out what would you need to do to increase X number of people who use computers in the Pacific Islands that could get their rates to drop.
A foundation could interact with the corporate world where the federal agencies can't.
MR. HANDLER: The Navajo tribe in New Mexico hires itinerant coroners. The deaths that occur outside the hospital, at one time the Navajo tribe wanted our doctors to certify causes of death.
Our doctors can't leave the hospital to go to where the death occurred. So, what the tribe did is, they have an arrangement with coroners that when a death occurs, they hire a coroner and he fills out the death certificate.
One step further, I think there is an arrangement with the state of New Mexico where birth records, the Navajo tribe basically is the repository of birth records.
Then eventually they give it to the state. They have a greater responsibility than occurs in a usual setting. That is a different issue altogether.
DR. IEZZONI: We haven't heard from people from the freely associated states and territories in the last few minutes. I see some of you kind of shaking your heads and some of you nodding your heads.
Does all of this sound like, I have heard this before, or some of it? What can you tell us that can help us improve what we are going to recommend right now? Anybody?
DR. ZAMORA: I think that you have to look at us at different levels. I don't want to sound harsh or bragging or anything, but listening to the experience of the different representatives here, but we are at different steps to our goal.
We are all looking to get to the same goal, but we are in different stages. So, it worries me to make general recommendations, because each of us have different needs.
I would like to see that in your paper, at least in the introductory remarks. I think that each territory or possession has its own worries and hard times on priorities.
Basically we have the same problems, but some are in a starting stage, some are in a middle stage, some are a little forward in their work.
So, considering that, I think that if we send you our notes you will be more familiar with a whole lot of information that, due to time constraints, we didn't present in this time.
DR. IEZZONI: Oh, yes.
DR. ZAMORA: I think that even with all of our similarities, we are definitely different.
DR. IEZZONI: We hear you loud and clear and you are absolutely right. We did have a stack of briefing materials that were about this thick. They went through in detail each region, territory, country, state.
You are absolutely right. Just as a short hand over the last two days we have tended to slur things together. I assure you that in our recommendations we can't lose track of the diversity.
MR. SUH: Good afternoon. My name is Dong Suh and I am a policy analyst with the Asian and Pacific Islander American Health Forum.
It just occurred to me, it is my understanding that the Compact for the freely associated states is near its end and then is to be renegotiated. I was wondering what kind of impact that would have on what we are discussing now and just the issue of health needs and the collection of data.
DR. IEZZONI: Can anybody speak for that? Jonathan?
MR. SANTOS: I can tell you now that if a compact is not renewed it will have a dramatic effect on the Marshall Islands in particular.
A large portion of their revenue comes from their compact. That is just a basis in addition to the federal grants.
It will mean everything. It will mean the world, basically. We will be seriously affected.
DR. IEZZONI: Jonathan, can you tell us exactly what dates we are talking about?
MR. SANTOS: My understanding is that the compact of free association is due to expire in 2001. There are negotiations to extend or renew that, but it is not set in stone and it is still going on as we speak.
DR. IEZZONI: Thank you very much for bringing that up. Joe?
DR. ISER: You are exactly right. The two compacts with the Marshall Islands and FSM don't expire, but they are up for renegotiation in the year 2001.
I am sure Mr. Miller knows as well, that our department is just getting -- we are in the process of discussing with Department of State, who will be the lead in that negotiation, what our role will be.
DOI has been at my briefings on these issues for the department. Each department is now going through its internal phase.
Next fiscal year is when the Department of State will start the renegotiations with your government's representatives. It is in the year 2009 for the Republic of Palau, which is 15 years after they became a freely associated state.
Sort of as an answer to your question with specific kinds of numbers, the annual per capita income is about $2,000, of which about 75 to 80 percent comes from the U.S. Government.
I am off by -- I am figuring in my head at the same time as adding. That will not only be a significant problem for the Marshall Islands and FSM. It will be a significant problem, especially in the next two years for Guam, CNMI and the state of Hawaii, as people understand that their standards of living are going to dramatically change.
While they still have the availability of freely transporting themselves, the impact of the compact will become dramatic for at least those three entities and perhaps for some of the states as well.
DR. IEZZONI: We should make a note about that because what you are talking about are population shifts that will have health care implications.
We talked about in and out migration. This kind of in and out migration that large, we should be stating it.
MR. MILLER: Maybe I should add something here. I am on the eight ball on that one and need to get back into the loop on it.
I think it is likely to have dramatic effects, even if the compacts are renegotiated and extended, because they will probably do so in a different form, particularly in regard to federal programs.
That is all up in the air now and I don't know how it is going to turn out. I don't even know what the positions are yet.
So, it is something that definitely has to be kept in mind when you are talking about the effect on health programs and health statistical programs and what the exact relationship with each agency is going to be to the freely associated states.
DR. ISER: At the very least, it will be a significant drop in the year 2001, even if they are continued.
The thing that maybe this is the way we can emphasize it here, is that the Department of State told all of us, including the Department of Interior, a couple of years ago at a huge meeting on health programs, that it was our job to make sure that these countries were as independent and self reliant as possible. I think I mentioned that before.
This might be an opportunity, then, for your advice to the Secretary that, regardless of what happens in the year 2001, this is an opportunity for the freely associated states, and all the five territories mentioned here, for us to really upgrade significantly the amount of training and expertise that we put in the program, to get more out.
Particularly for the Marshall Islands and FSM, they should be as self reliant as they clearly can be in another three years.
MR. NGWAL: I think in light of what Mr. Iser was talking about and also Dr. Zamora was talking about in terms of infrastructure and capacity building, if there was a source of funding that the islands, that everybody -- as the representative from Puerto Rico was saying, that we are at different steps and different levels of our programs.
So, one situation for one particular place will not apply to everybody and there are a lot of different steps. So, to devise programs for all the different islands would be tremendous.
I think if there was a source of funding available somewhere, that we could have that, based on progress reports or projects or whatever is going to a particular place, I think that would probably be the best solution for everybody to look into, in terms of their own internal problems, and infrastructure, capacity building, training and everything else, for that matter.
DR. IEZZONI: Hortensia, did you have something you wanted to follow up?
DR. AMARO: Yes, I just wanted to sort of go back to Dr. Zamora's comment. It seems like it would be good if we could suggest a mechanism that would allow the islands and different regions to identify their own -- the challenges they are facing and solutions, so that we are not making blanket recommendations that may not apply to everybody.
The suggestion -- I just wanted to go back and ask you if you thought this would work for Puerto Rico -- that the suggestion of this set of funds that would be specifically for the territory and islands to develop capacity and infrastructure in health data systems, which means that you could apply for a grant for the area that you need, with a rationale and specific goals and objectives that are relevant to you locally, whether that meets your concern about making sure that solutions are able to be adapted to the different situations of the different groups.
DR. ZAMORA: My only problem with that is that probably you will give less money to Puerto Rico than anywhere else, and that worries me.
DR. AMARO: Why would you think that?
DR. ZAMORA: Well, because we have an information system established. There are people here who are starting to establish it.
We have a network. We have internet. We have all that already.
DR. AMARO: But you have identified, for example, some gaps in your discussions with us around the back log of the data that you have, and like you are working with 1995 data and you identified an area where if you had some help right there you could be reporting that data out.
You have identified a problem of the Medicaid cap and how you now have to use those dollars. So, this might be a source.
DR. ZAMORA: That is my point. Remember that my area is evaluation. So, when you establish the standards to evaluate whatever we request, if you establish need, I mean, it has to be defined -- they teach you in your statistics classes that you have to make it operation. So, classify what needy is.
DR. AMARO: Give us some ways of thinking about how to define this so that it meets everyone's needs.
DR. ZAMORA: Well, that needs to be worked. There are some basics that you have got to have. For example, the definition of cases, I said that is important, the system integration, I think is essential, and the availability of the data in a timely way and accurate way.
So, that could be some of the elements that you can use to evaluate our request for monies. But don't put -- my recommendation, and it is basically because I know what usually happens -- is that if you are going to evaluate me, my proposal, against some other territory which doesn't have a network or a system or anything, usually you give more money to them. I am just thinking ahead of time.
MR. DAVIDSON: Maybe Dr. Zamora is saying not to make the process competitive. Every territory has its -- is in its own place heading toward a goal. Nobody has reached its goal. So, everything has to be considered on its own merits.
DR. ZAMORA: Yes, that is my point.
MR. HANDLER: This, again, is similar to my agency. We have arrangements, compacts, with maybe 85, 90 different tribes, and some of them have outside resources and some of them don't. Some are further along than others. Some are bigger, some are smaller. I would suggest you contact the self governance office.
DR. AMARO: Is this the number again?
MR. HANDLER: Yes. Basically, it is the same thing all over again, but on a smaller scale.
DR. ISER: Just real briefly, I would like to re-emphasize what Dr. Koo said a moment ago and for us to think about set asides.
I think that has been implied through this conversation, but it may be necessary to be said.
DR. IEZZONI: That is the language the government speaks.
DR. ISER: Yes, set aside. When American Samoa or FSM applies for a grant, unless there is special consideration given to them, they will never ever be competitive, and that is the truth.
They just don't have the personnel who can write grants as even Idaho can. They don't have the people there.
DR. IEZZONI: That is very, very helpful and we hopefully have not offended anybody with that.
DR. ZAMORA: You have to come up with a list of criteria that you could apply to whatever --
DR. IEZZONI: What I was looking for -- what I heard yesterday, somebody said yesterday that $50,000 would make all the difference in the world to them -- Amato.
So, we are not talking necessarily -- probably $50,000 wouldn't make that much of a difference to you in your grand scheme of things, but it would make a huge difference to him.
DR. ZAMORA: I have my figures all ready.
DR. IEZZONI: Exactly. I think we also need to think in terms of how far a dollar can go is going to be very different, depending on where people are starting from.
Thinking in terms of not the absolute dollar value but how you can move the group along, based on --
MR. ELYMORE: To start with.
DR. IEZZONI: To start with; exactly. Tell us again what would really be important for you to buy with your $50,000. We ought to be able to come up with that. Were you actually talking about hardware people, software?
MR. ELYMORE: What I am talking about is the current situation now. We are already in progress. We already have programs that need to be done. The area that we need more help on immediately, as soon as possible, is to reach out.
If we had that $50,000 to help us with hardware and then to go out to sit with them and work with them so we can inform the public, I think that is our best chance.
DR. IEZZONI: Dr. Michael and then Mr. Santos.
DR. MICHAEL: I just wanted to make comment about, you know, we are talking about set asides and trying to get funding to do some of the specific things that have come up here today.
I don't know about any other jurisdiction, but what I would like is language that that is what we are getting the money for, that is what it has to be used for.
There is nothing like getting federal monies and somebody else has figured they have another agenda, and then we are still back to square one.
Even if we got integration to work and some infrastructure issues, it gets rerouted.
DR. IEZZONI: Carefully phrased. Jonathan?
MR. SANTOS: That is what I was going to say. Right now in the Marshalls, they are like NASA. You have to do more with less.
It seems like when there is personal accountability and a written protocol, they are getting a lot done.
In terms of cut backs, I read that in 1991, in terms of per capita expenditures in Kwajalein, for example, it was $110 per person in 1991. In 1997 it was only $37.40.
That is a good example and I use this number because it is well documented, and there can be no doubt of how accurate it can be. That is just a perfect example of the kind of cuts that have been happening.
MR. ELYMORE: I may be wrong, but I don't think money is the problem. I think sometimes when we put the money in front of us, it doesn't solve the problem.
When I say $50,000, I meant that is for the statistics. If you look at it, we already have resources that we can -- what we need to do is, we need to integrate and utilize the resources better.
The point I am trying to say here is, the more we have money, it still doesn't solve it. I think the commitment of the people and the policy directions is the best in the overall health.
I think the primary care has been with us in the islands for over 10 years now. We have not really come down to the concept where we think that this is my problem; I should do something about it.
DR. IEZZONI: How can we help with that? That is an enormous and very powerful thing that you just said. How can we help with that?
MR. ELYMORE: I think the main thing is that we have to inform the people. The people just have to re-think and think that money is not the solution to this problem. Their commitment to service is the most important one.
That is the area that we have to be really successful in. Just to reach out, I think that will make a big difference. I think we are -- we just need to reach out.
MR. SANTOS: I totally 100 percent agree with what the gentleman said. Like, you can give us all the money in the world, and it has to come from within.
I was just under the assumption that in terms of the recommendations you plan to submit, for commitment, that has to come from the country itself.
I was intending that. I believe that in terms of a different agenda. Most of the things I have seen in my experience, and not just in this position, is that politics play an ever-increasing role.
With a place as small as the Marshall Islands, things like - - I mean, I am trivializing, but things like purchasing pencils can become a political event, because it is very small and everything tends to get politicized.
DR. AMARO: The mainland, too.
DR. IEZZONI: Purchasing pencils, we were audited by HCFA. Trust me, purchasing pencils can be -- actually, Elizabeth, you were talking about that earlier.
I was talking about what Fale had been saying, it is trying to get a bone away from a dog. It is trying to get some of the information out of people.
You were talking about how often, though, it is in the context of scarce resources. So, they probably do play off each other. Do you want to say anything more about that?
MS. WARD: I think I would just comment that people tend to react that way in the face of decreasing resources. It is usually when people are feeling increasingly threatened over the fact that money is going away and you are describing situations that are exactly that.
People are on their jobs and they are coming back to work the next day and having anything to do for the next month becomes the behavior that they are most concerned about.
MR. UELE: I just want to comment about that bone and the dog. What I think I meant is there is lack of leadership over there.
I think if we do have that in place, I think it would be great.
DR. MICHAEL: I want to reiterate that is part of what I was trying to get across yesterday. The commitment issue and getting the right people -- and when I say the right people, I mean the people who are in decision making positions -- to buy into the need, the critical nature -- all of us who are here know it.
That is what we want. We are 100 percent committed to it. But we are not the last line of authority.
We have the responsibility but not the necessary authority to get beyond a certain point. So, you know, when I talked yesterday about a paradigm shift, I think that is part of it.
We need to get the buy in. I think the people at our level and those below us, I think we can influence them, but all the discussions about data utilization, that is another thing.
We ask people to collect data and then they never hear anything about those data. They are figuring, what is the point.
They do it haphazardly. We get poor quality data. Then it all goes back to what are we doing. There doesn't seem to be a commitment from the top.
The leadership issue, I think, is a critical one in this area. The fact is that some of it has to be done at home.
The Federal Government can help along by sort of saying, you have to do this. Then you start thinking you have to do this and maybe it gets internalized.
You can't help me take care of my home if I am not going to do my part. You can give me anything, but it still might not get it taken care of.
MS. WARD: I think that is a critical point and it brought back some thoughts. I think state health departments have been through similar kinds of processes.
What came about, which has begun to make some differences is, in fact, we have shifted training to state legislators.
We took training away from staff and we started training legislators, governors. For us at home, we started training our county commissioners.
We actually took training away from us and said, we are absolutely dead in the water, for exactly the reason you said.
We took those training dollars and when the county commissioners meet annually for their association, they get a public health leadership training institute.
They now are starting to vote for local public health dollars instead of just the public safety dollars.
Robert Wood Johnson began to realize this. They have given money to states to train regions of legislators about public health needs and health care reform.
So, those are experiences that we have had on the mainland that have, in fact, begun to make a difference.
You are right; at some point if your legislators are always voting for something else, we can be sending gallons of dollars, but if there is no leadership, no commitment to the fact that your health department should be doing it, you are always stopped.
MR. NGWAL: That is very true. I think it is a matter of commitment and accountability from local leaders, to make sure that these things happen.
We can be given all the money in the world, but if it is not going to happen at home, it is not going to happen anywhere.
It would be a waste of time for everybody to come and sit down and talk about these things, if the people at home are not committed to do their part to make this happen.
DR. IEZZONI: Could you see sending your leaders to Elizabeth's school?
MS. WARD: I think they would rather have their own school.
DR. IEZZONI: It was more kind of a rhetorical question. I mean, how can you train your leaders?
MR. NGWAL: They have to make a commitment. They have to realize the value of what they are getting in return for the health care of the nation.
If they don't realize the importance of that, then maybe they shouldn't be the leaders, because you know, without the health of the population --
DR. IEZZONI: Those are fighting words there.
DR. MICHAEL: This is a critical point. This is a resource. We know that it is being done somewhere. There must be some documents, some curriculum.
I think we probably -- I personally would really like to get some of that. We need it in the Virgin Islands.
DR. AMARO: This grant program that I am talking about, you could apply for leaders to be trained. I am being funny, but it could provide resources, if that is a need.
I think that this issue that we are discussing is common in just about every state. Every state probably, and especially the people concerned about data, have faced the fact that either other people in the department, the commissioner of public health or the legislators didn't want to pay for more health data systems.
It has had to be a process of education, of understanding. So, how has that been done? I think peer kind of pressure at the level of high level leadership is another thing that has been used in state departments, for example, and among governors and mayors, to educate them.
Then there becomes some peer pressure or norm that is developed, that now it becomes acceptable or understood that this is important to do.
So, I think that the issues are similar. Then, too, there needs to be a plan. What would work here in this situation, to get your leaders more attuned to the importance of these issues.
MR. UELE: I am thinking about leaders here. I am thinking of the two highest, the mayor or the governor. I am thinking of the director, the epi director, those people.
That is why they are not here. We send the paper. For the future meetings or workshops or whatever, if you ask for something to present, that would be the most effective way to send the right person.
DR. ROUSE: Very good lead-in to the question that I was going to raise. Until we get that training of the official organizational leadership, the question that I have as a government agency, when we try to contact people who are interested in an issue, how do you reach the right person?
In dealing with American Indians, for example, I have heard people say, well, you always ask the same people and they are not the true leaders in the community.
The question is, how do you identify the true leaders, the persons that are really dealing day to day with the issues, the ones who are responsive and can do the work. One response is, ask them to do the work.
Especially if you are going through this organizational change where the mental health is different from the health is different from the hospital and only one representative can go, can you give us some guidance on who to contact, official or unofficial.
MR. ELYMORE: Usually the people to really contact is the same, the directors or epi directors. You know, you have to know, I am sure the island ways, actually no matter what something is, they say everything is good; everything is all right.
In FSM, for example, we are cut back 20 percent, all employees cut back. So, that is why we don't even think about money any more.
We, of course, need the money. But we have to start re- thinking about what we can do ourselves. Of course we need the money, but we have to prioritize and then start with something and, as we go along, we can hope we will be all right.
If we are out of the compact in 2001, what else are we going to do? So, right now we borrow some money from ADP.
So, we are trying to let so many people off and let them have two years of their salary and start to start their own little small store or retail or whatever, fishing, something for themselves.
That is what we are doing right now. When I say I only need $50,000 to augment the vital and medical statistics, that is based on the plan of action that I already have. Even right now --
DR. IEZZONI: You won't be held to that figure, Amato. It was just used as an example.
DR. ZAMORA: Regarding her question, I live in Puerto Rico. Feel free to call me. You make a network. When people think everything is impossible, you know somebody somewhere that you can call, and those people know somebody else. I think it is the same with every island.
You make your network and if they tell you it is impossible, then you call your friends and your friends call your friends and you find somebody.
I don't know if you have the full address of everybody, but you lose the continuity. Sometimes you are newly appointed and you are starting to make your network.
I have been in my position for five years. So, I have a pretty good network already.
MS. SABLAN: According to my jurisdiction, I guess that the proper person really to contact, if we plan to set up any kind of money involvement or anything, as long as the Pacific Area director of health is acknowledged, so that he knows what the plan is, it is up to him now to designate.
He believes that if you are the manager or the administrator of that unit, then he believes that you can handle your unit.
So, once we get the green light from him, okay, this is what is happening. You went to this training, this meeting, and this is what came of that meeting. They are going to provide us with certain training, manpower, whatever.
I want you to now take into consideration these things, and you make it work. So, he will designate you because you are the one who knows the complete -- you are in your house and you know what is going on in your house. So, you have your group that you can concentrate on.
When that designation comes to me and I am not aware of it, that is a different story. For myself now that, you know, we have gone to this meeting and then if there are other trainings and the Secretary got this letter and said, Maggie, are you aware that you are supposed to be having this system in place and all of the systems. I will say yes. Then the communication will start from there.
If it is, for example, here is a letter and he goes to a different unit manager and he says, you know, there is this system that they are planning to do and there is manpower money and blah, blah, blah, and yet he is directing a different program, that is when everything collapses.
If you are saying, this is for your statistical use for data, you are supposed to have a place where the collection of data or data analysis is being done in this unit or department, then all this effort will go into that.
In the end, everybody will benefit because you are giving everybody their share. You are producing the data for them.
MR. HANDLER: I have a suggestion for the people from the outlying area, not the department -- you can listen, though.
In the northwest part of the United States there are maybe 23 different Indian tribes. Some of them were newly recognized in the last 10 years or so.
Some of them had no health facilities at all, and none were being built for them. Some compared their lot to the rest of the country, the rest of the tribes, and they had a lot of things that they didn't get and it didn't seem like they were going to get.
That is where this whole self governance movement began, in the northwest area, called Portland, and the Portland area office.
What they did was, they formed the Portland Indian Health Board, where the tribes all got together and worked as a team.
Some are better off than others, but they joined forces and acted as a block. Maybe that is what is needed here. Some of the outlying areas need to get together and form a group, a consortium, so that they all speak with one voice rather than each one separate.
Even though you are miles apart, then go to the Congressional leaders as a group and say, this is what we need. But that is for you to do. It is not the government telling you to do that.
DR. ISER: That is already being done. That is what PIHOA does for the Pacific Island jurisdictions.
One quick thing, to get back to Elizabeth, there is an organization called APIL -- Asian Pacific Island Legislators -- which is the organization of legislators from at least Micronesia. I am not sure American Samoa is involved, but I think it is.
That might be a way to get back to what one of your questions was a few minutes ago, and it is a group that probably could deserve a lot of training.
In fact, Lynnette and I have been talking about doing that on telehealth and telemedicine applications, because anything that we want to do out there in that area can be stymied, as you have heard many, many times, unless we get the legislators behind us, as well as the administration.
DR. IEZZONI: Lynnette, we should maybe put a suggestion to think about training them with the same kinds of approaches that Elizabeth was suggesting.
I know that Elizabeth is going to have to leave us and I would like to wrap up. It is almost 3:00 o'clock. Does anybody have any kind of final burning comments?
We have had a wonderful, wide ranging discussion over the last two days. As I said earlier, what we are going to have to do as a subcommittee is regroup.
We have volumes and volumes of things to consider and we have to, again, formulate it in a way that is going to be compelling and pointed.
DR. ZAMORA: I think one of the things that I have emphasized, when I have been coming and going, is how well and how many accomplishments all these different territories have, based on the resources that we have.
I think that perhaps that realization with the department here, as well as making sure that they might collect data that you don't even know about, but what are the statistics that they collect that you are not using right now that might serve your purposes in maybe a slightly different way.
For instance, in Puerto Rico we collect smoking and alcohol use data that is not presented in any way. So, we ended up being excluded from the Surgeon General's report on tobacco use by minorities, and that report is the basis for a lot of other different things.
So, I think that there really -- they really are to be commended for all the things that they do. Perhaps one other way would be to have representatives from the territories in all the commissions.
Every time there is a meeting, somebody could be there representing the viewpoint of the territories, as varied as we all are, but perhaps that is something to take a look at.
DR. IEZZONI: That is an excellent point. A lot of the rhetoric over the last couple of days is really focused on needs, which implies a lack of achievement.
We cannot imply that, because there has been tremendous achievement and effort by people around the table.
So, again, our subcommittee will go back. I think we have a lot of work to do to try to formulate a very specific set of recommendations and put it into the appropriate context about your achievements and your diversity. Are there any final things?
MS. WARD: This is one group of people who have come farther than anyone else to any of our hearings, which means we will probably never seen any of you again.
My sense is, even though it has been only two days, I feel like I have learned a tremendous amount and I am sorry that I won't probably ever see you again.
I would like to know how are we going to -- how is the communication link going to go? Is it going to be back through the Office of Insular Affairs, so that we know you all got what our final words were, your comments back?
I would like to know that we aren't just going to move on to our next hot topic as they go on during the year, but we will have a sense of being able to track this.
DR. IEZZONI: I know that that will not happen, that we won't move on. We have been dogged in getting this meeting together. We started a year ago.
We are going to need to caucus with Joan Turek and Lynnette and other folks to figure out how best to get input, disseminate --
MR. ELYMORE: Excuse me, I just want to say something. I am sure our births and deaths, it is already standardized because we are using the United States.
I think most of the items in our certificates, it is from where we are from, but it includes just about everything that is required by the United States, on the death and birth certificates.
Maybe you people would like to see from our country, and maybe that is something that we can agree on it, and you can give us time tables so that we can start to do that, so that there would be some feedback.
DR. IEZZONI: So, birth and death statistics from your country.
MR. ELYMORE: If everybody agreed on it. I think it would be nice for people to know what we are doing, than just come and talk and no solution, no product.
DR. IEZZONI: We can certainly explore that, should people want that.
DR. CARTER-POKRAS: If I could just piggy back, I know that my office, the Office of Minority Health, is very interested in receiving and sharing any information that you do have.
We did a quick review for Puerto Rico and the Virgin Islands just based on what was in the file drawers in our office.
I am sure there is much more there. We also had done much of that some years ago for the Pacific Islands. This would allow us an opportunity to include that information every single time a discussion about resources is made.
I see that we have got Betty Lou Hocksin(?) in the room. I would like to introduce you. She is also with the Office of Minority Health.
She can help make sure that the data are used to influence health policy at the departmental level, especially with the Pacific Islands. We can include that also with the Hispanic agenda for action and other initiatives in the department.
DR. AMARO: I am trying to make sure that I understood your suggestion. Were you suggesting that there be some kind of ongoing or with some kind of periodic publication of data on the territories and islands, at least on birth and death? Is that what you are suggesting?
MR. ELYMORE: That is exactly what I am suggesting. I think we have been producing a lot of things but we never really put it in something like this. Nobody ever really seems to want it. You need to know what we need.
For example, I cannot even afford to publish something, even though I have the stuff. I never publish anything now because I don't have any funding.
I think those are the kinds of things that can even support -- one thing, for example, we may not know where we can get help.
As far as vital statistics, it seems like in our place, we tend to be separated from other, even though we have the health information system that is supposed to include everything.
One sector is missing, which is the federally funded programs like family planning, MCH, immunizations. Other things are sort of independent vertically, operating with their own data base.
In fact, if you look into their data base, they don't really have a data base anyway. They have so many requirements that they are almost overwhelmed with it.
Most of them are nurses and it also affects their work, patient care, that they need the data. We need to work together.
DR. IEZZONI: I noticed Mary Anne having notes on this.
MS. SABLAN: I would like to go back to what Elizabeth said earlier about, here we are for the past two days and we have sent messages to you and we also received messages back to us.
Then we go back home now. The next thing is, what is going to happen? All the recommendations that are going to be compiled or made from this meeting, is there something like a follow up to that?
It is always happening, every time we go to a meeting or a conference or a workshop, it is kind of like stopped there.
I went to one mental health statistics conference, and that was it. After that, I never went to the second and third, and now I don't know what is going on.
DR. IEZZONI: The National Committee on Vital and Health Statistics has a long track record that Marjorie can attest to, of keeping track of how recommendations are responded to by the people to whom we make them.
In this instance, we will be making explicit recommendations to the Secretary, that you will see and participate in.
You know, we have to talk about exactly how that will happen, but we will track the Secretary's response to those recommendations. Do we keep that on our internet page, the status? We don't keep that.
We have a periodic report that comes out of the National Committee on Vital and Health Statistics that does keep track of the response to the various recommendations that we have made.
As a committee, we do have a history of sometimes putting recommendations into the proverbial black hole, where nobody every responds to them.
That has raised our hackles, or the hair on the back of our necks a little bit. It makes us snarl and get a little angry.
Recently, that has not been the case. I think that recently there has been responsiveness, especially with the new data council that Jim Scanlon was talking about, and some of the other efforts around the table that people were talking about, to try to better coordinate things.
We as a subcommittee will track the status of things as we go through time.
MS. GREENBERG: I am thinking that some of Hortensia's principles may actually be not only principles that may be recommended to the Secretary, but that maybe permeate the committee as well.
This is the first meeting of this type, and I have been working with the committee since the early 1980s.
Obviously, the committee is an advisory committee. So, they make recommendations, but they have no funds and they have no authority.
DR. IEZZONI: We have no power.
MS. GREENBERG: I won't say that.
DR. IEZZONI: Bully pulpit power, and we use it well.
MS. GREENBERG: The powers of ideas and intellect. Actually, the committee plays a very important role in the department and increasingly so with HIPAA and other activities.
One of the things that I think wasn't explicitly noted, but was that the data council is the link with the committee, and that the chair of the full committee does sit on the data council and participates in their monthly meetings.
I would say, in my experience, this has been a real improvement from the point of view of communication.
On a sort of mundane level, I assume that everyone, Barbara, who attended this meeting will be put on the mailing list for the subcommittee? I assume there is nobody who wouldn't like to be on our mailing list.
We have your e mail addresses. I know individually I have asked a few of you if you do have e mail addresses, but if you haven't given them to me already, please let us know your e mail addresses. We can use snail mail and faxes and everything else, too.
DR. IEZZONI: The NCVHS sends out a lot of mail.
MS. GREENBERG: We do have a web site that I think has included our communication with everybody who has internet access. That should really be right on the agenda, what our web site is.
DR. IEZZONI: It is usually on the second page in the small print.
MS. GREENBERG: I think I would like to see this, although I don't think the committee has a lot of resources to have a lot of meetings of this type.
I would like to see this as kind of the beginning of a relationship as opposed to a one shot situation.
DR. IEZZONI: Nick, do you have a comment on that?
MR. NGWAL: I was just saying that right now I am struggling to build infrastructure and capacity for the Republic of Palau in terms of health.
I was just wondering if and when something is going to come out of this so that we can see what happens.
DR. AMARO: I was going to suggest, and in response to Magdalena's comment before also, that we leave this meeting with some very clear and concrete sense of what you can expect to get from us.
I think it would be easy to say that we will be writing up the notes of this meeting. We will then meet, I assume, and think about how do we structure that into a recommendation.
DR. IEZZONI: Yes, September 17.
DR. AMARO: Yes, September 17 is about when we will try to have a set of recommendations for the Secretary.
DR. IEZZONI: No, that is when we are going to meet. We have August. We have vacations around here during that time. Nobody is ever available to make any decisions in August. Early fall. That is what I say, early fall.
DR. AMARO: We will have the letter for the Secretary. I am sure that it wouldn't be difficult for us to forward those recommendations to you and maybe keep you part of some kind of periodic update on what we are hearing about, whether she has taken any action or any initiative developed.
DR. IEZZONI: Yes, I think that is --
DR. AMARO: We will want to track it as part of our committee and if we could just forward that information to you?
MR. NGWAL: That would be tremendous.
DR. CARTER-POKRAS: I just wanted to point out also, today and yesterday there were a lot of people who were very hungry for your input.
They came specifically to hear your input and will be able to incorporate it even a lot sooner before we formally send forward recommendations.
In fact, the issues for the Virgin Islands is something that is wanted and needed and going to be incorporated in the September progress review for Healthy People 2000 for black Americans. They desperately need that from the Virgin Islands.
I know that just this week at the University of North Carolina Minority Public Health Institute, over 1,000 are teleconferencing from around the country to participate in that conference, to talk about minority health statistics.
They got a preview as to what was going to be discussed during these two days. So, they said, when are the minutes going to be out. When are the minutes going to be out. I want to have the minutes.
We know the Pan American Health Organization was represented here yesterday. I feel pretty good that we don't have to wait until something goes forward on paper and that we formally present to the data council that those of us who have been hungry for this information are going to use it, now that we have it.
DR. ZAMORA: Is it possible to include in the minutes our address and e mail, so that if someone wants to contact us, they could use that?
DR. AMARO: That is certainly a good idea. In fact, I had looked at the list of addresses and I noticed the e mails were missing. We need those.
MS. GREENBERG: We could actually attach the roster of participants and contact information in the minutes.
DR. IEZZONI: Yes, that is a good idea.
DR. AMARO: Do we have a single point of contact that each of these participants should know? If you are thinking when you get back home, I don't know what has happened. Who do I call; who should I write to?
DR. IEZZONI: I think Lynnette would be the best person from our subcommittee? Do you think Joan Turek?
MS. GREENBERG: I think Carolyn Rimes.
DR. IEZZONI: Carolyn Rimes, who is based at HCFA actually, is the lead staff to our subcommittee. Our subcommittee actually has a lot of staff because we have a variety of different types of activities that we pursue.
Carolyn organizes it all and she is very responsive. We have the list of staff along with the list of committee members, subcommittee roster.
MR. DAVIDSON: When the minutes come out -- first of all, I really admire how frank everybody has been and how they spoke of their own political situations, or whatever.
One of the next steps is they may need to write their own defense of some of those contents.
DR. IEZZONI: The minutes --
MS. GREENBERG: The draft minutes are sent to all the participants.
DR. IEZZONI: The minutes, remember, is not a raw transcript.
MR. DAVIDSON: I understand.
MS. GREENBERG: The transcript will be up on the internet. There are not too many people who --
DR. AMARO: So, you will get the minutes of the meeting in draft and have a chance to comment on them in case something you said wasn't captured or accurately written down.
MR. UELE: I would like to add onto the mailing list, since we are here and everybody sort of knows each other, for future training, workshops, seminars, or whatever.
I would like to have the chance to recommend that if you have any wish to bring anybody from American Samoa, please try to be specific in the future, so that the director or somebody will come specifically for that training that is going on at home. That will help a lot in the future. If you have another training like this, you will see another face.
DR. AMARO: We should ask specifically for you.
DR. IEZZONI: Any other final words?
MS. ARAKI: For those of you -- I know a lot of you took a lot of time to prepare your comments in answer to the questions that this committee had sent to you and asked you to consider.
If you can mail your written comments, or if you already have them, e mail them, that would be helpful. We will use those for our report.
DR. IEZZONI: I forgot to mention that. We are going to have not just recommendations, but also about a 10-page report that will actually kind of document what you have told us over the last couple of days.
People are not familiar, as we weren't before we learned from you all. So, that report will be part of this. Hortensia, did you want to say something?
DR. AMARO: I just want to say thank you. This has been a very important meeting for me. This is an issue that I brought to the committee a long time ago.
DR. IEZZONI: Hortensia is the instigator of this.
DR. AMARO: I am very interested in having our health data system be more reflective of the reality of who all of us are. To me this meeting was part of that.
I thank you for coming. It was impressive to see how much you prepared, how much you were doing with really very challenging situations.
In some cases you are doing very innovative things that you can learn from, and I hope we have a chance to learn from.
One of the primary issues that the committee has taken on, we will track this, and hopefully to the point of seeing something, some recommendation come to reality.
I hope that it isn't the last time we see you, at least personally, although you know, I am open to continuing contact with you. I have your e mail and you have mine. I will do what I can to keep you informed in a more informal way of what our activities are.
Thank you, and thank you for sharing with us all the work that you are doing, and the important information. We will do our best to put it to good use.
DR. IEZZONI: Thank you, Hortensia, and thank you to everybody. Okay. Safe travels home. I hope you get there before too long.
[Whereupon, at 3:14 p.m., the meeting was adjourned.]