[This Transcript is Unedited}
Adams Mark Hotel
1550 Court Place
Denver, Colorado
Proceedings by:
CASET Associates, Ltd.
10201 Lee Highway
Fairfax, Virginia 22030
Agenda Item: Call to Order and Introductions - Dr. Mays
DR. MAYS: Good morning. And good morning to those on the Internet. I think what we'll do is start,
we've been just a little delayed, some of you may know that our President is here in the hotel speaking today so it took a little time for people to get through to get to us and everything, but we're going to get started.
I'm Vickie Mays, the Chair of the Subcommittee on Populations of the National Committee on Vital and Health Statistics. Can we get the sound turned up here in the hall, I'm sure it's probably perfect, we don't want to blow away those of you on the internet, those in the hall would like to be able to hear.
It's my pleasure actually to welcome you to a hearing today in which we are going to be looking very specifically at issues and the collection of data on race and ethnicity in American Indian and Alaska Natives. But I want to start by also saying thank you to those of you who are here who are participants as well as those who helped to identify participants, such as the National Indian Board, the National Council of Urban Indian Health, and there were a number of other individuals who, we'd be here probably for another 20 minutes if I gave you all the names, so I just want to say on behalf of the committee I thank everyone for helping us get to this point in the hearing.
Also, as we do introductions I just want to point out that several of our staff will introduce themselves and as they do I just want to acknowledge the hard work that they've put into making this reality, in particular I want to acknowledge Edna Paisano, who is with the Indian Health Service, she's been wonderful in terms of the help that she's given us and the contacts that we've made, I don't think we'd be able to do this without her. We also need to recognize our co-lead staff, Audrey Burwell and Dale Hitchcock. Dale could not be with us today but please do not take that as Dale worked very hard at helping us to get here, so if he's on the internet, thank you Dale. Of course, Gracie White who provides our support, so they will introduce themselves but I just wanted to at the start acknowledge that we're all here as part of a process, and that they've been integral to that process today, so thank you to all of them.
What we usually do at this point is actually an introduction of everyone who is here. We'll start with those of us who are sitting at the table and then we will extend ourselves to other individuals who are here and in the audience. Maybe I can start with the member of the committee who is sitting to my right.
DR. NEWACHECK: Thank you Vickie. I'm Paul Newacheck, I'm a member of the committee, I'm a faculty member at the University of California, San Francisco Medical School. I'd just like to add my thanks to the speakers and the guests and the staff for organizing this hearing and we're looking forward to a very informative process today.
MS. PAISANO: Good morning. I am Edna Paisano, I am the principle statistician at Indian Health Service and I just recently joined to support the committee on populations.
MS. HUERTIN-ROBERTS: I'm Suzanne Heurtin-Roberts, I'm from the National Cancer Institute, I'm Health Disparities Coordinator for Behavioral Research. I don't know what else to say, I'm a member of the committee and I'm very happy to be here. I look forward to hearing from everyone.
DR. JOE: Good morning. I'm Jennie Joe, I'm from the University of Arizona in Tucson.
MS. RUSSELL: Good morning. My name is Beverly Russell and I'm the Executive Director of the National Council of Urban Indian Health, based in Washington, DC.
DR. RHOADES: Hi, I'm Dorrie Rhoades, I'm a physician and an assistant professor at the University of Colorado Health Sciences Center in Denver, but I live in Seattle and I'm very confusing that way.
MS. FOX: Good morning everyone. My name is Evette Joseph Fox. I am a member of the Culfo(?) Confederated Tribes, which is located in Eastern Washington. I serve as the Executive Director of the National Indian Health Board. It's my pleasure to be here this morning.
MS. CRUTE: Good morning, I'm Sherrie Crute and I am the writer for the Subcommittee on Populations.
MS. JACKSON: I'm Debbie Jackson with the National Center on Health Statistics. I am staff to the subcommittee.
DR. BREEN: Good morning, I'm Nancy Breen. I'm at the National Cancer Institute, I'm Health Disparities Coordinator for our division and my program, the applied research program, and I'm delighted to be here today, I think we have some very important work to do. Thank you.
MS. BURWELL: Good morning, I'm Audrey Burwell, and along with Dale Hitchcock, we are co-lead staff for the Subcommittee on Populations, both out of the Office of the Secretary.
MS. KELLY: Good morning, my name is Dorothy Kelly from Region Three based in Philadelphia, I'm the Regional Minority Health Coordinator.
MS. HUNTER: Good morning, my name is Mildred Hunter, I'm the Regional Coordinator for the Office of Minority Health in Region Five which is located in Chicago, IL.
MR. JOHNSON: Good morning, my name is Robert Johnson, I'm from St. Claus State, Minnesota, Professor and Director of Ethnic Studies there.
MS. IRON CLOUD: Good morning, my name is Patty Iron Cloud, I'm a member of the Oglala Cultivation in South Dakota and I worked for my tribe there for 17 years and a year and a half ago I moved to Washington, DC, and I am currently employed at the Department of the Interior, Office of Substance Abuse Prevention. Thank you.
MS. WHITE: Good morning, I am Gracie White, NCHS staff.
MS. MAYS: Great. Welcome to everyone and as people join us we will, at maybe the afternoon session, be able to pick up on the additional introductions.
Agenda Item: Background of Subcommittee and Overview of Meeting - Dr. Mays
I want to start just briefly with a little bit of the background about the committee and kind of the process and procedures today and I think that will help us before we actually begin to turn to our speakers. We have a very long history on the National Committee on Vital and Health Statistics with having a concern about the health of racial and ethnic minorities. We have had since the '70's committees that have ranged in names from Minority Health Statistics Subcommittee to what we are now which is the Subcommittee on Populations, in which we've been very active in making recommendations to the Secretary of HHS and others about some of the issues in terms of the collection of data on racial and ethnic groups.
Today what we're focusing on in the Population Subcommittee is an examination of trying to determine whether or not there is data that will allow the department and others who are interested in the elimination and reduction of disparities, the adequate data in terms of racial and ethnic groups, particularly to be able to comment on things like health status of the groups, health behaviors, as well as health care. As many of you know this topic is being looked at by the Institute of Medicine, by various foundations, and of course in a number of federal agencies within HHS.
The role of the committee has really been to be advisory, we are a federal advisory committee. We usually advise on those things that are only within our purview, so while there may be a variety of things that we sometimes hear about we usually try and stay within the context of those things that are the charges to the committee.
We've embarked on a series of hearings and in the series of hearings our hope really is that we will come to know more about the data needs, the data collection procedures, the measurement issues and even some of the barriers that may exist to collecting the data on racial and ethnic minority groups that can be used in the service of determining health disparities and putting forth programs that can eliminate or reduce those disparities.
Our first hearing was one in which we looked at the population based datasets that were collected by the federal government and others. We have also had individuals visit our committee to talk to us about how disparities are measured, a little bit about how that's determined, what formula's used, it's really been looking at kind of the statistical, with a statistical focus. We at our recent meeting, I think it was yesterday, I'm getting my days confused, the day before I guess, had a presentation on the collection of vital statistics and some of the issues and concerns relative to collecting vital statistics with racial and ethnic minority groups.
We will have a hearing on November the 8th in Philadelphia in which we will look at state activities and their capacity to collect data that will facilitate their ability to determine and to reduce and eliminate health disparities in racial and ethnic groups.
We also of course have on our agenda some future hearings for specifically looking at these issues for Asian and Pacific Islanders and we will also look at this issue of the role of language when we talk about the collection of data, so the committee I would say busy in terms of these issues but very much welcomes the opportunity today to hear very specifically about the issues for American Indians and Alaskan Natives.
In the case of hearings today with American Indians and Alaskan Natives we have also directed individuals to our web site. For those of you who are on the Internet I'm going to say what that is so please bear with me I will try to do is slowly and articulately, www.ncvhs.hhs.gov. The reason I'm telling you that is because we've actually posted our questions and we've encouraged people to send us comments, so if you're not able to be here with us today, please do not fret that you won't have an opportunity to comment, but we're actually open to hearing from others. We did this in recognition of the diversity of the American Indian and Alaskan Native community and also as a way of getting additional input. We are quite sensitive to both urban and rural issues, we know that not everyone will be able to travel here so we wanted to have another source of input from some individuals who are the experts on these issues so, please feel free to send us your comments.
Let me talk a little bit about the process that goes on in terms of these hearings. After each hearing what we do is we actually post the transcript and materials that may be connected with the hearings on our web-site. That's another reason for me to give that to you. We examine what we hear in terms of looking at the themes, the recommendations that you suggest and we proceed with ways to try and determine how we can be most effective in passing on that information that's within our purview. For example, this may range from sometimes we meet with the Institute of Medicine, we give testimony at some of their hearings, as far as for example we may also write letters that would go directly to the Secretary of HHS.
A process at times can be a bit slow, but nonetheless we try to be as effective as we can in facilitating change, so it's in that spirit that we greatly appreciate all that will be shared and discussed with us today. The procedure that we'll follow for the hearing, which is kind of standard in our hearings, is that we have a series of presenters today and we also have a time which is dedicated to questions and answers.
For those of you who are on the internet, our first question and answer period is really from 11:30 to 12. One of the things that we've done today to allow you to be able to send us questions is that we have a e-mail address and if you e-mail your questions by 11:15 what we will do is make sure that at the 11:30 time we will read those questions out, time permitting, we will read your questions out and try and get answers to those questions. So again, let me try to do this slowly, the e-mail address to send the questions is swilhide@magnasystemsinc.com, so hopefully I did that slowly enough but I tell you when I teach the students say I talk too fast, so I'm hoping you were able to get that so that we can proceed on.
Agenda item: Opening Remarks: Eliminating Health Disparities in Indian Country - Ms. Fox
Our first presenter for today is Yvette Joseph Fox and Yvette is with the National Indian Health Board and we're very happy that she's been able to join us. Yvette, let us start with you and on behalf of the committee, thank you and we welcome you.
[Brief delay for microphone problems.]
DR. MAYS: Okay, our apologies to those of you who are out in the internet land, but it sounds like our technicians have been with us here and that they've managed to get us great sound, so thank you very much. Let's get started. I'm going to introduce you again, in case they didn't hear you. Yvette Joseph Fox, MSW, is the Executive Director of the National Indian Health Board and she is going to be talking about health disparities in Indian Country. And again we welcome you and thank you for your perseverance.
MS. FOX: Good morning everyone, for the third time. It's great to be here. As I noted, my name is Evette Joseph Fox and I am a member of the Confederated Tribes and it has been my pleasure to serve as the Executive Director as the National Indian Health Board for the past seven years.
The National Indian Health Board is based in Denver, Colorado. We serve to represent the interests of all 561 tribes across the United States. The Board of Directors of the National Indian Health Board are appointed to serve on the National Indian Health Board by their respected areas, many of them represent area health boards, at least ten of our board of directors are from area health boards, the other two are also amongst their tribal leadership generally elected by the tribal governing bodies in their state to serve on the National Indian Health Board. We also have a very active set of alternates who also serve to the Board members and for the most part they are either elected tribal officials or tribal health directors or appointed representatives serving at the pleasure of their tribes.
The National Indian Health Board will be celebrating its 30th anniversary. We have a base of operations here in Denver Colorado and we have a staff, a satellite office in Washington DC, which I'm proud to say is very, very close in proximity to the United States Capital. The national Indian Health Board advocates on behalf of tribal governments in terms of policy development, research and legislative advocacy. We also do quite a bit of training and technical assistance and we're always pleased to produce and present our annual consumer conference to generally an audience of about 800 to 1200 people each year. Many of our conferences our based on different themes that we hope to focus on. This past year our conference was here in Denver and that conference was titled Facing the Challenge, Fostering Tribal State and Federal Relationship to Improve Health Care Delivery.
Most recently, earlier this month, we hosted a large international conference called Healing our Spirit Worldwide, working with a collected group of partners, different organizations from the national level to the international level and we had over 3600 at our conference in Albuquerque, New Mexico. At that particular event we hosted 180 workshops on issues related to addictions, to health and to governance. We're very pleased to have at least 14 other countries participating with at least 500 representatives from those countries, noting their concerns related to indigenous health.
My presentation today will cover health disparities in Indian Country and I'm going to try to give you a sense of the issues related to disparities that stem over history going back to early time prior to European contact up to the present time. As I noted earlier, and it may not have transmitted, is that I'm not particularly a statistical scientist, I am a social worker, I've had extensive graduate training in research and research methodology statistics, but it really wasn't my favorite topic in graduate school.
Anyway I'd like to give you a good sense of the history of health disparities in Indian Country first, and then I'll tell you more about some of the relevant issues today.
In terms of pre-contact, the way our tribes operate and the way very many Indian people operate is that they've always relied and have continued to rely today on traditional Indian medicine and culture as probably the key reason why we've been so resilient. I want to sort of make mention and I feel like it's important to raise this point, earlier this week during the Office of Minority Health Conference which the HHS sponsored, I did quite a few presentations about the issues of health policy and the budgetary impact that Indian Country face and the reasons those lack of funding contribute to the disparities. I want to sort of talk about something that at present right now on the Senate floor in Washington, the discussion of homeland security is presently going back and forth about the creation of a new department around homeland security and I know that about a year ago Senator Tom Daschle began to feel the effects of potential anthrax warfare being, basically, causing the Hart Senate Building to really go into closure for over four months. Indian people are familiar with those forms of biological germ warfare.
Going to back to pre-colonization, Lord Jeffrey Amherst was the commanding general of the British forces in North American during the final battles of the so-called French and Indian Wars, and that was in the period of 1754 to 1763. He won victories against the French to acquire Canada for England and helped make England the world's chief colonizer, which led to a lot of the establishment of the United States. The town of Amherst, Massachusetts was named for Lord Jeffrey even before he became a Lord and Amherst College was later named after the town. Despite his fame, Jeffrey Amherst's name became tarnished by stories of small pox infested blankets used as germ warfare against American Indians and these stories were reported, for example, in a book called the Atlas of North American Indians written by Mr. Carl Waldman.
In this book which was published in 1985, Waldman writes in reference to the siege of Ft. Pitt which was in Pittsburgh, of Chief Pontiacs' forces during the summer of 1763 he wrote: Captain Simeon Ecoyer had bought time by sending smallpox infected blankets and handkerchiefs to the Indians surrounding the fort, an early example of biological warfare which started an epidemic among them. Amherst himself had encouraged this tactic in a letter to Ecoyer. That was on page 108 of this book.
Some people have doubted these stories, other people believing the stories. Nevertheless, assert that the infected blankets were not intentionally distributed to the Indians or that Lord Jeffrey himself is not to blame for the germ warfare tactic. Whatever the case may be the strategy to eradicate the American Indian was thought to have been utilized as a genocidal means for the taking of Indian land and that we know has probably occurred later throughout the history of American in terms of the loss of 450 million acres of Indian land.
Many people believed that prior to European contact there were more than 14 million Native American people who inhabited this country and that when the Indian wars period was over in the late 1800's, only 250,000 survived and I want to point that out because today, in according to the U.S. Census Bureau 2000, there were approximately 4 million identified, self identified American Indians and Alaskan Natives of which at least 2.5 million are noted as living in the United States. There's some who may be more non Indian but identify, because they made changes in the way that people are recognized in the Census, but at least 2.5 million Indian people are out there of which probably the Indian Health Service presently serves about 1.6 million.
American Indians and Alaskan Natives have had to deal with a lot of issues relating to our survival and we're very happy that we've moved beyond the 250,000 number but back then in history, in the early 1700's, they weren't collecting data on the number of colonists nor on the number of Indians, but there's much discussion about how many Indian people were there prior to European contact and we can't through this kind of hearing go back to examine that, but it would be interesting to see how people managed to survive and what were those resiliency factors that contributed to the survival of Indian people and a lot of it we believe is because of traditional Indian medicine and culture.
In the 1800's, and I'll move quickly through to contemporary time, the war department was very involved in epidemic control. Sometimes they supported these biological germ warfare events, sometimes they were working to try to help save Indian people. Eventually in the 1800's the war department has been the responsible agency for the survival of Indian people and the control of Indian people most likely for the taking of land. Through time people became more enlightened and were more willing to work to see the survival of Indian people and eventually the responsibility by the federal government for Indian people transferred to the Bureau of Indian Affairs which is under the Department of the Interior. So those folks that are responsible for lands and minerals and resources were also responsible for the health of Indian people. Sometimes a lot of Indian people think that's kind of crazy and I still kind of think it's that way today.
There were over 800 treaties that Indian people had because of the treaty relationship that Indian people have. We are separate and unique from other minorities in that we have a political and legal relationship. A lot of that had been destructed during the Dawe's Allotment Act in the 1800's which created the disruption of culture and health.
Into the 1900's there was a report called the Meriam Report conducted by the Bureau of Indian of Affairs that noted there was a significant decline in health and then there was the creation of the Snyder Act which addresses the conservation of health.
In terms of the history of health disparities in Indian Country, back in 1955 the Indian Health Service then became responsible as an agency of the Public Health Service for the responsibility for health care for Indian people in this country and comprehensive primary health care became available on or near reservations. These health services represent the federal trust responsibility in the United States for health care. The mission of the Indian Health Services is to raise the health status of American Indians and Alaskan Natives to the highest level possible and in the past 45 years or so the Indian Health service has worked very progressively to try to improve the health care of the Indian people and the communities that they live in.
Health status has improved over time but the disparities are still very significant. In terms of social economic disparities, as you can see, the economic status of American Indians and Alaskan Natives is dramatically different than the economic status of the general population. Over 32 percent of American Indians and Alaskan Natives live below the poverty level due to unemployment and underemployment as compared with 13 percent of the general population.
However, surprisingly, only 11 percent of American Indians or Alaskan Natives are on Medicare. This low number is due to a lack of education about Medicare enrollment and benefits and a lack of eligibility due to living a subsistence lifestyle, not having paid in the necessary number of quarters through payroll deductions. It's hard to accrue those kinds of benefits when you've been very much unemployed and I can say that there are some reservations where unemployment reaches up to 80 percent. Probably not less than four hours from the city of Denver is the Community of Pine Ridge South Dakota where the Oglala Lacota people live and 80 percent unemployment is generally the figure that they present.
Early this week, I really like to watch Good Morning America, and what I saw was that unemployment statistics in America are reaching possibly 5 percent unemployment and they seem to make a key point that isn't this intolerable and I would think if they knew and reported on Good Morning America that 80 percent of Indian Country was unemployed in certain parts of this country there would probably be greater public outcry.
Many Indian people live in very remote rural areas of the country. It is typically more difficult for these areas to attract businesses that employ large numbers of people and provide comprehensive health insurance. There's generally a lack of access to job-based insurance. Finally another important factor is the lower rate of education among American Indians and Alaskan Natives. Uneducated people typically have a tougher time getting good jobs with good benefits and they are less likely to be informed of symptoms and early warning signs of disease and are less likely to have meaningful conversations and ask questions of their physicians which sometimes contributes to the fact that there's limited health. So you can see that only 65 percent of American Indians or Alaskan Natives over 25 graduated from high school.
In terms of chronic illnesses, and I'll speak just more specific to health disparities, chronic illnesses have become critical for many Indian communities. The rate of diagnoses and morbidity are many times higher than the national average and these rates continue to grow. Diabetes has reached epidemic proportions within the Indian communities. The incidence of diabetes is verily, strongly tied to family history. Almost every extended family in Indian Country has been impacted by diabetes.
Funds are not available for optimal day to day care such as regular blood sugar monitoring. Consequently longer term impacts of diabetes including kidney failure, amputation and vision problems have also reached epidemic levels.
We're very fortunate to have the staff that we do, most of them are Native Americans. The person who helped us on communications is a non-Indian woman who grew up in Nebraska and she has been diabetic for most of her life and she enjoys, she doesn't enjoy, but she has to test her diabetes nearly every day and she has the strips to do that and when they told her that when you're fortunate to get at least 100 million for Indian Country to help them to treat and prevent diabetes, that people were excited that they could test their blood sugar at least three times a week, she couldn't believe that. She just says that's outrageous.
In terms of heart disease, heart disease is also a serious problem for Indian communities. Risk factors for heart disease include diabetes, cigarette smoking, obesity, high blood pressure and high cholesterol. Over 60 percent of all American Indian men have had at least one of these risk factors and when over age 65 typically two or more risk factors are present. Again, the lack of preventative care and rural patient care means that patients with heart disease are not seen until the situation has become severe.
In cancer, generally cancer diagnoses rates within Indian Country are fairly comparable with the national average. However, when examined more closely, American Indian and Alaska Native patients are diagnosed younger, reach a terminal stage more quickly, are diagnosed when the disease is at a more advanced state and has minimum access to cancer specialists and new experimental treatment programs, problems that can clearly be linked to the lack of funding and available resources.
In terms of preventative illnesses, within Indian communities there are a number of health situations that are very preventable. One preventable health situation is injury and poisoning. Rates for both of these situations are higher than the national average, especially when viewed regionally. American Indians and Alaska Natives have much higher rates of death due to poisoning. A number of environmental factors are at the root of this disparity including the use of pesticides, lead-based paint and poor air quality, especially for reservations near urban areas.
Accidental deaths are at a critical point. For young American Indian and Alaska Native men ages 12 to 17 accidents are the leading cause of death. This can be directly related to the prevalence of risky, illicit behaviors. American Indians in this age group have a higher rate of drug use, binge drinking, driving under the influence of alcohol, use of cigarettes, group against group fighting, and carrying a handgun.
The final preventable illness that I'll highlight is infant mortality, which continues to be a crisis for Indian communities. In other populations with high infant mortality the disparity is typically due to congenital birth defects. However, amongst American Indians and Alaska Natives, the rate of Sudden Infant Death Syndrome is two and a half times higher than the national average.
Behavioral issues and lack of adequate medical care and new mother support are thought to be among the causes. Teen pregnancies among American Indians or Alaska Natives are 75 percent higher than white populations. Over 45 percent of Indian women have their first child before the age of 20. Adequate prenatal care is well documented and there are efforts to reduce the level of infant mortality and specifically SIDS.
I hope I'm not speaking too fast.
The final topic of health disparities I want to address in terms of sort of the big three that we look at is behavioral health. It is impossible to see the complete picture of the health care situation in Indian Country without examining the behavioral health situation. Behavioral issues worsen a number of other health conditions and in turn are worsened by other health situations.
The high rate of alcoholism amongst American Indian people contribute negatively to many other health situations within Indian Country, including behavioral issues, overall health levels, the economic situation and accident and injuries. The American Indian Alaska Native population is more likely to attempt suicide and is also more likely to be successful in their attempts. Other issues feed into this high rate including the problems with substance abuse and economic desperation. As you can see, suicides are 72 percent higher than all races.
In terms of domestic violence, it is estimated that as many as 75 percent of Indian women have been victims of domestic violence. Additionally, these women are more likely to require medical attention for injuries sustained as a result of domestic violence.
Where those issues stem from often times are perceived as consequences of the federal policy of forced removal where two generations back many of our, even four generations back, many of our Indian children were moved to boarding schools, there's a lot of discipline and anger relationships that have been established with the consequence that it flowed it down through families. There are also, there's a great to do about the sexual abuse that was alleged regarding the perpetrators in the Catholic Church recently that drew a lot of national attention. Those issues were highlighted in Canada and the Canadian natives were successful in suing the Catholic Church and they received quite a few hundreds of millions of dollars to help in dealing with residential school abuse issues. Why we haven't had an organized effort here in the United States is still left for probably additional inquiry, but I believe that it contributes to a lot of the issues related to behavioral health in this country.
I've heard in one reservation recently there were 800 cases of sexual abuse reported in the tribal community where the enrollment probably doesn't exceed 7500 and out of those 800 cases in one year, four were successfully prosecuted. The criminal justice systems response, the health systems response to sexual abuse is very very limiting. It is hard to say with a straight face.
Disparities in terms of access to the quality of health care -- as you can see there are enormous disparities existing for American Indians and Alaska Natives in access to quality health care. In many ways the Indian Health Service is a model program, however, it has never been adequately funded to meet patient need and is currently only funded at 70 percent of need. Sometimes it ranges from 40 to 85 percent for different tribes, and not as based on history, time and the law, mostly good political appropriations.
The vacancy rate for professionals is approximately ten percent and there is minimal funding available for specialty care. Currently there are no oncologists or cancer specialists employed in Indian Health Care facilities. I just learned yesterday that in fact there is I think an oncologist available on a part-time basis at the Alaska Native Medical Center in Anchorage. Out of 515 medical care facilities that are direct secondary, tertiary level care, to have only one oncology unit based in Anchorage, Alaska doesn't really meet the needs of the rest of Indian Country, but we're proud of what Alaska Natives have been able to accomplish there.
Because of the lack of monetary and human resources, the health situation has become quite critical for American Indians and Alaska Natives. Many patients are denied care. Based on the IHS Fiscal Year 2001 data from 1998 to 2001, there was a 75 percent increase in the number of reported denials. Many denials are often not reported so that number is very conservative and I wish I could say what 75 percent means but I believe it's in the hundreds of thousands of referrals where people need specialized medical care and they cannot access that care. The "loss of limb" rule applies when determining whether or not contract health care will be available to treat a patient, only patients that have reached a very critical condition are seen. Preventative and well patient care is rare and that extends not only in terms of the health arena but in terms of ability to have sight, the ability to have proper dental care.
Disparities in research data -- disparities are worsened due to the lack of statistically significant data. The current health disparity situation is worsened by the lack of comprehensive accurate research data. Because the population is small and geographically diverse, it is very hard to identify patterns of incidents and treatment. Additional resources are available to help reduce disparities, however, the relevant information may not be available to secure the funding through grant providers and the federal government. Basically it is very difficult, sometimes impossible, to gain enough statistically significant information about a certain disease or condition within a certain population to draw accurate conclusions and develop effective programs. What seems to be most obvious is the fact that American Indians and Alaska Natives are statistically insignificant, which I looked up in the dictionary just to clarify for today's hearing.
Insignificant means that we as a population are too small to be important and that seems to be an overriding fact in terms of funding available from the National Institutes of Health, from the Centers for Disease Control and from other private research efforts across this country. There have been a lot of efforts in this past couple years, organized efforts, by high powered lobbyists to increase the funding for the National Institute of Health, to double the funding, we're talking about increases of two to three to five billion dollars. In Indian Health, we have a budget of $2.8 billion to provide for all the comprehensive health care of Indian Country and we have poor people who are organized, but not organized well enough in terms of the political contributions that they can make to these members who support University based health research that basically is funneled through agencies like the National Institutes of Health or the Centers for Disease Control. And I guess the point is is that we've been working very hard at the National Indian Health Board to seek at least one and half percent allocation of those resources to address these resources, particularly related to cancer and to heart disease and diabetes. And I guess when you're statistically insignificant you're just too small to be important. I don't mean to politicize this discussion but I sort of think it's very important for the funding agencies to see what Indian people face.
Getting onto talking about health surveillance research and information. Within the public health arena the profession of epidemiology, biomedical research, health systems research and health education are considered distinct specialties, each with it's own types of training, funding streams and activities. It's hard to say all those words. In Indian Country, these activities tend to be lumped together for a variety of reasons including the fact that they are generally not a source of direct patient care, they are generally focused at Universities and agencies outside of the Indian Health Service system. They require quantitative skills that are not well understood by most people and the benefits of these activities are not always immediately apparent to American Indian and Alaska Native communities. It's been a lot better since we have seen more American Indians and Alaska Native professionals, people like some of the experts here in the room, who have entered into these arenas into these fields. I really wanted to for the purposes of today's hearing just go to the Centers for Disease Control and ask how many epidemiology programs or surveillance program are funded in state government as compared to Indian communities. We've been lucky since the Indian Health Care Improvement Act in 1992 established epidemiology center authorizations to have at least four and now six epi centers where there are mostly non Indian epidemiologists helping tribal governments to figure out their epidemiological data and I guess what I would say is that if you look comparably more and more of the resources go to the state governments who count our Indian people but do not necessarily provide the service to tribal communities.
Most tribes understand that factual data is needed to put together a compelling pitch for additional funding, however, they are reluctant to divert limited funds away from the provision of basic health services and historically they have participated in research without seeing the ultimate benefit or positive results.
I guess the reason I'm saying that is that this issue of the diversion of limited resources, you're busy as a physician probably or as a nurse trying to fix the problems, you don't have any time to do research or data analysis. Indian Health Service on a per capita basis, an Indian person secures probably no more than $1400 dollars of care per year. American's who participate in Medicaid get at least $3600 dollars worth of care, but because the funding is discretionary and not mandatory, the funding base for Indian Health is very limited and so in the severe rationed system of care you just treat the illness, you don't get to prevent the illness and you don't get to study it or understand it or present the evidence it make it compelling.
The information age has increased the need for data. In this information age various types of data and information are necessary to provide health services. Policy makers need information on the demography and health status of American Indians and Alaska Natives so that they can identify unmet needs, monitor health status over time and take responsibility for funding at an appropriate level. I'm talking about people in Congress and people in these federal agencies that have these resources that should be looking at Indian health.
Health care managers need information to assess the quality of care and health outcomes so that they can identify opportunities for improvements and health care systems. They also need information on the costs of delivery of services and revenues in order to maximize the resources available to meet local needs.
Health care providers need research to understand the best strategies to prevent and treat diseases in the most effective and culturally competent ways.
Consumers also need information that translates medical research into an accessible format allowing them to make informed choices about lifestyle and treatment plans.
There aren't many telephone systems in places like Pine Ridge where you have high unemployment. There aren't a lot of telephone systems in places like my reservation in Washington state because there's about 35 percent unemployment there and we just don't have the infrastructure to lend itself to broad-bend connectivity to study the internet. I think they're great, American Cancer Society outlets, web-sites, there are great American Diabetes Association web-sites, to inform the public about issues related to their disease focus, but Indian Country doesn't even have the opportunity to access that information.
There are problems with data collection. There are a number of problems that exist within the current state of data collection in Indian Country. A big problem exists with the size of many communities within Indian Country. Research projects that attempt to focus on estimates and projections of incidents and prevalence of disease within specific geographic communities are often flawed because the numbers involved are not statistically significant. Many times these issues are not corrected when a national perspective is taken. For example, a high disease incidence in the Northeast may be erased by a low disease incidence in the Deep South, resulting in information that is not meaningful on any front. A lot of that happens with issues like suicide, because not all communities experience suicide. If the majority don't, if there were 14 or 15 suicides on one reservation, it becomes statistically insignificant.
Even gaining national data is often difficult. There are very few comprehensive national data bases. One reason for this is that many compacting tribes view participating in national programs to be optional. Additionally they are free to use their own systems for capturing and tracking data that may or may not be compatible with national systems and databases. And I think you can say that's true for the non-Indian community, but for the most part there just isn't a collective set of data. The issue of self governance only complicates data collection and there's this policy of self-determination and self governance where at least presently 52 percent of the Indian Health Service resources are contracted or compacted by tribal governments who provide for the health care in their community and it's been a great outlet for improving and expanding services because tribes are more actively involved in their programs. But the problem is is that those tribes, because the Indian Health Service hasn't advanced information technology as extensively as they could with their data, with the RPMS system, the tribes are taking these off the shelf to do cost accounting and in-house third party reimbursement, but that they are doing that in terms of the sacrifice of this collective development of data.
A final but significant problem results from racial misclassification. As race continues to blend and intermarry it becomes much more difficult to commit to a single racial classification. For example, if a person has one Indian grandparent, two white grandparents, and one Hispanic grandparent, how is that person classified?
I guess one other point that I hadn't made that it's easy to see why tribes would be reluctant to take part in research programs especially if they were unable to maintain ownership of the intellectual property that is generated as a result of a study and consequently many tribal governments have the legal right to negotiate reporting requirements on an individual basis during their funding negotiations and so I need to clarify something I missed in my earlier points, sorry if that's confusing.
I'm getting close to ending my comments here so please bear with me.
Local community data. Data on the health status of the local community can be very useful for local planning, priority setting, and funding allocations. Additionally tribes need this data to effectively apply for grants and additional resources. As previously stated the small numbers make statistical errors a higher possibility. Additionally, the lack of research specialists make it hard for tribes to design effective research programs. A further problem comes in the definition of the population. There are three basic choices, one, the people who use the ITU systems, which is the IHS tribal or urban programs at any given time, that's the user population; number two, there are people who have ever used the system, ITU services as the service population; and three, the entire population of the tribe, so you have different sort of subsets in the data that are out there.
There are benefits and drawback to using each of these numbers depending on what is being measured and the population must be stable to operate to achieve accurate results. Several initiatives are being developed to help tribes measure accurate local data on health status. One of these programs are the IHS funded tribal epidemiologic centers, the purpose of these centers is to provide technical assistance and data monitoring for the tribes and their regions. And those epi centers in the locations where they are based they're really improving the funding of Indian Country.
I'm going to speak just briefly about urban data. Unfortunately accurate and comprehensive data do not exist on the health status of urban American Indian and Alaska Natives. My friend here Beverly Russell will be more clear on this. These programs are very under-funded and each program provides a different service level. Many patients must go to several health care facilities and no data is collected for the entire experience, or population. Additionally many patients are referred to non-Indian urban Indian Health clinics that don't even record ethnicity much less additional data in the non-Indian community setting.
Suggestions for improvements. Many aspects of the Indian population make it attractive to research organizations. However, Indians are quite wary of being the subject of another research project. Therefore, it would be beneficial for all to partner with research organizations to develop effective research to answer questions on the minds of the Indian health care providers. Additionally, by partnering tribes can facilitate the inclusion of local and traditional knowledge into research and science, influence research priorities, provide feedback mechanisms and ensure that native people share in the economic benefits derived from their intellectual properly.
A number of programs are underway to increase the number of American Indians and Alaska Natives. Researchers who can conduct high quality research and successfully apply for the grants from organizations such as the CDC and the NIH. Academic programs focus on the research needs of the American Indian and Alaska Natives and I think the NARCH(?) programs are a great example of that and I hope you'll get to hear more about those in your study efforts about this population.
Finally, Indian health care consumers must be educated so that they understand the importance of participation in research programs and the necessity for accurate data. Grants and programs that result from health research must be promoted to consumers so that they understand the value of research.
Essentially, that sort of concludes my presentation. I wanted to reference particularly for each of you, especially the folks here in the room, we've had a couple of documents published by the National Health Board in recent years about the policies of Medicaid and managed care. We've done studies for foundations about consumer choices and tribal choices in the selection of their health programs. We've looked at quality care issues in the study on self-determination which was a nationwide study of each of the 554 tribes in 1998 and it was a year long study. We had a 38 percent sample. We were kind of ambitious, we said let's go after all tribes to get their opinions on the policies of self-determination and when we surveyed all of the tribes, working with the area health boards, which are almost like area centers of excellence, working at the direction of tribal governments, we were able to get 210 tribes out of the 554 to participate in our research effort, which is a 38 percent sample of the entire population. We do a lot better working at the direction of tribes with their confidence in doing comprehensive research and we had a doctor, we had a lawyer, we had a finance CPA type, as well as a lady who is now getting her doctorate in health, working with us on this study and it was very, very comprehensive.
I guess what I wanted to sort of say is that if you work with tribally controlled organizations you're going to have a much better research effort and it's very good research. But based on that publication and learning about copyrights and working with publishers, we developed a relationship with the American Public Health Association and much of the information I shared with you today is in a book called Promises to Keep, it is a public health policy primer for American Indians and Alaska Natives in the 21st Century. This was released nearly a year ago by APHA, it was edited by Mint Dixon and Yvette Rubideaux and I have a chapter in here on the Federal and State Policy to Strengthen Indian Health and a number of my former staff, actually part of the research team who put together the study on self-determination, did this book. I think it would serve to inform you well about issues of chronic and preventable disease in behavioral health as well as the issues with health data.
I didn't want to embellish it too much but there are not other books really about American Indian health care that have been published recently and we hope that through hearings like this that we can continue to see more published research that is tribally controlled for the benefit of our American Indian and Alaska Native people.
So with that I want to thank you for time and for listening to what I hope is not rhetoric but is something that is going to be looked at seriously.
DR. MAYS: Thank you. One of the things we welcome is any information you want to share with us in terms of those publications and what have you and we'll make sure that we distribute that information so we greatly appreciate it.
What we're going to do at this time is actually turn to our other presenters so I don't know if anybody needs to switch computers or anything for the next presentation. And then what we're going to do is take questions for all three of you at the end of the presentations.
Our next presenter is Dr. Jennie Joe who is at the University of Arizona. In this next group of presentations what we're going to talk about is the issue of Identification of American Indian Alaska Native Health Disparities. As many of you heard from our first speaker, the issue of identification is a significant one, a significant one for a lot of reasons that she jus talked about. As they switch computers here, it will take us just a minute before Jennie Joe is ale to start.
One of the things I'd like to do, Gracie? Can we just take a moment to introduce some of the other people that have come in? While they are getting started, we'd like to welcome those of you who have joined us, we'd also understand because of security some people are driving around and trying to get in. I think it's a tribute to those of you who have come in if you're not staying in this hotel because as I understand it it's taking a bit of time and perseverance, I should say.
Welcome, introduce yourself.
MR. JOHANSSON: Patrick Johansson, Office of Minority Health.
MR. OLIVAS: Lorenzo Olivas, Office of Minority Health, Region Eight.
DR. MAYS: I'm going to share with you as Dr. Jennie Joe gets set up the kinds of questions that we had put forth for consideration when we were talking to our presenters and the kinds of things that we are ourselves struggling with. Again, we were interested in soliciting comments to help us better understand data collection needs and the issues of data being available at the national, state, tribal and local levels in order to determine, assess and reduce and eliminate health disparities for American Indians and Alaska Natives.
We were also interested in whether the current method for determining race and ethnicity fits the health care needs of American Indians and Alaska Natives and tribes, rural and urban areas of North American territories, so this is part of what we were soliciting comments on. We actually asked, and those of you who are on internet who are going to go to our web-site, what you'll see is that we're asking, please describe various data collection analysis and disease surveillance for eliminating health disparities in American Indians and Alaska Natives.
Also, describe strategies that the HHS could use to remove those barriers. Please describe strategies that the HHS could use to increase the capacity for American Indian and Alaska Native researchers and organizations to conduct health disparity research, demonstrations and evaluations. And also, describe the strategies the HHS could use to support relationships between and among tribal colleges and universities, academic researchers, state and local health entities. Finally we were asking, please describe the accountability mechanisms that the HHS could institute to ensure the development and maturation of these partnership relationships and strategies that could also be used to support those partnerships with American Indian and Alaska Native communities in order to improve safety and quality in health care. So that's part of what you will find on the web-site and is the background for the presentation.
I see that you are set and ready to go. Any other things that you'd like to tell us by way of introduction please feel free to share them.
Agenda Item: Identification of American Indian Alaska Native Health Disparity Issues - Dr. Joe
DR. JOE: Well, I just want to express my appreciation to the subcommittee for making this opportunity available for us. As far as I can determine, this is the very first time that such an invitation has been given and I would hope this is a beginning and not the end. I think lots of things that Evette mentioned in her presentation are similar themes that are going to be part of mine. I think we look at the same theme and maybe say something a little bit different, but I think the outcome is what we're particularly all interested in.
My experience in this whole area of data gap was probably brought home more vividly then ever in my recent participation in the Institute of Medicine study, taking a look at this whole issue of racial and ethnic health disparities. The gap was I think big enough and troublesome enough that we took on an additional initiative to do kind of a quantitative study to deal with some of the questions that we felt needed to be included in this report and as I understand it that particular chapter is available for people who want a copy.
I think the other thing I want to say is that much of the things that we do in our concerns about the disparity is probably comparable to many of the developing country. I just received a couple days ago before I came the European health report and this again brings to mind the whole idea of the role of social and economic factors that have to do with poor quality of health and variety of different cultural setting and different variety of different groups. I think this is a significant report that I hope will have ramification not only for this country but for other countries as well.
The report notes that there is a great difference in health status across countries and among groups within countries and the major determinant of health are liked to social and economic factors. I think the thought questions as Evette had mentioned, are tribal health leaders and our health care delivery providers have always been involved in sort of echoing the same message, that one of the problems we have though in many cases is that we make this connection statistically indirectly using census data to not only highlight the extent of poverty but the fact that there is unparalleled the extent of poor health. We rely on this particular two sets of data to provide this information.
The problem is it would really be more convenient to have that socioeconomic types of data or even social data available in the kind of health data that is collected on everybody so that you really can make much more use of the kinds of data's that are available. The difficulties that also this data doesn't really tell us very much other than a real broad stroke and what would be useful at the health care delivery setting is really to have something that you can take in your hand and do something with it because it does reflect your community or your particular group that you are interested in.
We have virtually no data with urban populations simply because they are scattered throughout and we have a difficult time linking their health situation with that of other groups that live in various urban environments. I guess the new cross that we have to bear, those of us who are involved in research in one way or the other, is the whole change with the 2002 Census. It has added new complexity to the whole identification, I think, it's when people self identify it means different things to them as it does to people who are at the other end trying to measure such things as health disparity. One physician who I was talking to not too long ago said this to me, this is a quote, he says "Even on our good days, we are confused about who we should, who should be considered American Indian or Alaska Native for the purposes of measuring health disparity."
Much of what we know about the health of the American Indian and have been for a number decades has really been based on mortality data, I think for many reasons and I think that's true for other groups as well. We have problems with that data set and you've heard the issue of misclassification, racial misclassification. It's quite common for someone to be born as an American Indian to die as maybe somebody that's something else, maybe Caucasian. There's a high percentage of this and there have been a series of small studies taking a look at both birth records and deaths certificates and in some cases have found about 20 percent of people being misclassified, so it's problem.
I think the difficulty is trying to correct this is a very expensive and time consuming. We don't have any control over who puts that kind of data on either the birth certificate or death certificate. Sometimes nobody even asks, they look at your face and figure that's who you are. I recently have been refinancing our home and there is a section in that data that's collected on you that talks about your race or your ethnicity that without asking me I was marked down as Hispanic and I didn't know it until I saw the papers afterward. It's probably a federal requirement but it should have been my choice to put that correct information instead of someone making the assumption.
I think the other thing is trying to correct these kinds of things are very expensive and we continue to do it because we feel there's a need for it. But, I don't know to what extent that we can ever really solve this case without producing investment and training people who actually enter this kind of data.
The National Center for Health Statistics is a fantastic resource when it comes to health data information. It has a lot of limitation for us as tribal communities, however, because we're always lumped into the other category and the other one, and the reasons always is that it's a small end, unless there's something in there that's statistically significant enough to warrant attention. So consequently, this in many ways is much more damaging then is really helpful. It really says a lot more about what we die of than sort of saying to us that this particular type of health situation is regionally different, that the problem in the Southwest is very different from Alaska. How can you develop any kind of intervention or inter-prevention without having some accurate type of data resource. So this is a problem and I hope the subcommittee will take this challenge and help this particular American Indian and Alaska Native to solve some of these things or maybe limit some of these problems.
The cancer data, cancer is a special interest of mine, I've been involved in this area for some time. For the longest time, until probably about ten maybe eight years ago, New Mexico tumor registry was sort of our major data source for talking about cancer in American Indian Alaska Native. New Mexico tumor registry has data for Arizona and New Mexico. It's really a disservice for tribal communities throughout the rest of the world or the rest of the country because the cancer pattern in New Mexico and Arizona is very different from North Dakota or South Dakota, or even Washington State.
So we have really tried to put emphasis on looking at data that looks gives us regional differences and I think that's been very helpful. For instance, now we do know that lung cancer is much more of a problem in the Northern plains then is in the Southwest. So, we've been leaning on this one data source for quite of sometime. We have made some progress, there is now a tumor registry in Alaska who is facing a major problem because cancer is a leading cause of death for both men and woman, although when you do rates, it turns out to be the second leading cause of death and you know, those of you in epidemiology how that works. So I think these kinds of things are important.
The Cherokee nation in Oklahoma has also got some funding from the National Cancer Institute to set up their own cancer registry. I think we've tried to do with some of these problems and I think we've had to do it so that we can at least address the problems at a local level that are much more appropriate.
We do know for instance that cancer is of low incidence but we don't really know what the incidence rates are. We do know that once Native people get diagnosed with cancer they are more likely to die. I think what we really would like to be able to have the kind of SEER database that now only tells you the stage of cancer when it's diagnosed, but the outcomes as well. We're trying very hard now to develop cancer survivor groups so that we can reverse sort of a common assumption out there in many Native communities that once your diagnosed with cancer, the next thing to do is that you're going to be in some graveyard somewhere. There is this concern, and it's the kind of the thing that the community sees because if you have somebody who is diagnosed with cancer, they're often diagnosed at such a late stage that they do die, so but that's the message and sort of experience the reality picture that communities see.
The Indian Health Service data I think has always been for many of us the gold standard because this is our data source. It has limitations that we're well aware of, it's limited to people who use their facilities and/or the facilities that are funded through their resources.
We have problems, however, in some of this data, we have poor data sets on urban dwellers, people who don't really live on reservations and who don't use the Indian Health Service. And it's really difficult to do some comparison studies. We do comparison studies with U.S. all races but I think it would be much more meaningful to talk about maybe the data for American Indians on reservations versus urban and it probably would be more meaningful to talk about reservation data versus rural America. I think those are important. We have a very young population and so a lot of the risk-taking types of behaviors are very evident if you look at unintentional injury, accidents, and those kinds of things. And the data that's collected at Indian Health Services does not routinely include economic information. They may ask for health insurance but they do not every ask for people's income.
And family support. One of the things that was really frustrating in participating in the IOM study was that there was limited information on quality of care. Nobody was asked if they were satisfied with the health services. Nobody was asking what happened if somebody was referred to a University hospital for maybe a triple by-pass or maybe for chemotherapy. So there was really no feedback.
The other thing that I find very frustrating and I think it's probably frustrating for a lot of other researchers, the whole area of co-morbidity. Indian Health Service has fantastic data but it requires man time, manpower hours and costs to be able to do something meaningful. I was recently asked to do a presentation on cancer and diabetes. Where does a cancer patient have to look, what kinds of precautions should a patient who has diabetes, Type II diabetes, take when they are faced with breast cancer and have to be treated for breast cancer? What are the contradictions when it comes to the medications and what they have to do for their diabetes? And to get that kind of data to sort of talk about what the prevalence is out there with this co-morbidity was really difficult.
The other thing I think I mentioned is quality of care. I think that many of the programs that serve tribal community are really motivated to collect data primarily to justify getting funding from various agencies. So consequently it's not really collected so that it can be useful and something that they can really measure the health status of their community. I think these kinds of things are very important.
The other area that was very lacking in our activities in my work with the IOM report has been this whole area of discrimination. It's all purely anecdotal. It's alive and well out there, we know it's happening and people talk about it but I think that we are not really suited in some ways to sort of measure this and I think we need to take a look at all the various ways that the health care delivery system is either accredited or judged in the way they deliver services to be able to include that measurement somewhere. I'm not saying it's going to be easy, it's always going to be difficult, but I think there should be an attempt to do that.
We are always faced with financial problems and I think this is something that has been stressed more than once. I think when you are a health care provider at a local level you're always concerned primarily with delivering care; data is secondary. There ought to be some way to sort of commit equal kind of emphasis but it's not always possible so I think the fact that some of the tribal communities that are taking over their health care delivery system are saying now that this is an option, collecting health data is not as important as delivering services, so we have our work cut out for us to be able to address those kinds of positions that are being taken.
I think the other thing is that even the kind of use of health data is very uneven. We tend to respond to the national issues of the disease of the year, if it happens to be cancer, there's money not only in research but maybe special demonstration projects, and these are very well accepted and communities respond and two or three years down the road the monies gone and nothing has really continued. There tends to be these kinds of demonstration programs that have really no long-term viability in many of the communities that we serve.
I think we need to continue to address the various data gap and as I mentioned earlier I hope the subcommittee will be able to continue not only to work with the various entities that serve American Indians Alaska Natives, but I'm delighted that you've included Edna on your committee work because she's well, not only with her background in the Census data but now with Indian Health Services I think a valuable member or resource that people can call on.
I think in order for us to get a better measurement of even how bad things are or how well things are improving, we really have to have good data and I think that we need to get additional resources to do that. I think what I would like to see is that I know in some government arenas there are certain states that participate in collecting special sets of data to sort of give a better indicator about what's going on. I think we need to do that also in Indian Country. I think we need to select certain urban and reservation communities to become sort of our data set communities, where we really can look at certain kinds of things more in depth, be able to do some comparisons, not only with other reservation community but we can see something a little bit more meaningful I think by taking this kind of approach.
I definitely advocate for the inclusion of socioeconomic data, I like the notion of family support, this is a tribal cultural group that has survived poverty and has survived poverty by use of family support, extended kin, and it will continue to do that because poverty is not going to go away.
The other think I think that is poorly measured and I always advocate for is not only the recognition but the contributions that are made by the traditional healers that are also still very active and working in many of the tribal communities. Many of our mental health services get handled that way, sort of a continuing kind of resource that's always been there.
And we definitely need some quality of care measurements and I think there's a lot of controversy about what that should include and I hope that there'd be an opportunity to sit at the table and come up with something that will work for everybody and that would be especially meaningful for the communities that were particularly interested.
There are also data gaps that we need to address when we come to that table and those are the kinds of things that are probably not on the radar screen of many of the people concerned about health disparities. The problems of alcoholism, suicide, homicides, and these are the kinds of things that are not things that we see in the medical or clinical arena until there's an accident, until there's a death or maybe somebody comes in for detox.
So these are the things that we really need to address and I think this is particularly a problem for our younger population, this is going to be the future and if we invest in all kinds of prevention we ought to include this and these are important kinds of things and I think that we have a number of programs but we're not doing a good job of documenting what they are doing and how they are evaluating successes.
Alcoholism is particularly interesting because most of the medical arena has always sort of considered that as not a problem or a challenge for them. They're willing to come to the rescue of a patient during a need for detoxification but thereafter if becomes a social problem and somebody you put back out into the community.
We need innovative approaches and I don't think we're any different from anybody else regarding that.
My last slide here talks about recommendation. I like to continue the theme that's been said over a number of days about collaboration. I think we need to address what the whole idea of the Census data is doing to measure health disparities and I think we need to address the idea of about how can we better use the kind of health data that's out there collected by the National Center for Health Statistics. We need to continue to dialogue, I think we need to keep people from Indian Health Service at the table because I think they for us as I mentioned provide that very critical information.
There are two reports that are published every year by Indian Health Service. There is Indian Health Trends and Regional Differences. These are the kinds of things when we are making any proposals to our Indian research plans, these become sort of very important resources, the literature that we include as our background and I like to think that if we can improve that resource it be greatly benefit, not only the communities but also the people who are trying to help improve the health status of American Indian Alaska Native.
And finally I just want to reiterate that I think race and ethnicity information is important and I know that in many places people think that it's infringement on people's right or privacy but I think for those of us who are concerned about doing something about health disparity I think we need to say and take a stand and say it is important.
Thank you.
DR. MAYS: Thank you very much for a very enlightening presentation. We have a little more in our series before we begin to take questions. And that is Dorrie Rhoades, Dr. Dorrie Rhoades who is from the University of Colorado by way of Seattle. She's getting her Power Point presentation set up. While she does that I'm going to take the opportunity to again mention for those of you who are out in internet land and want to send some questions in, I'm going to again share with you the e-mail address that you can send those questions to. It is swilhide@magnasystemsinc.com, I feel like I'm in a spelling bee thing. But again, that's swilhide@magnasystemsinc.com, so I think Dr. Rhoades is ready. Welcome and thank you very much and as I offer any additional introduction that you'd like to make please feel free to share it with us.
Agenda item: Identification of American Indian Alaska Native health Disparity Issue - Dr. Rhoades
DR. RHOADES: Good morning and I'm happy to be here and I'm going to be talking about disparities in data and disparities in health. This is the case of American Indians and Alaska Natives and I appreciate the invitation to talk here and I'm humbled, the 20 minutes just is scratching the surface.
But a little bit about me. I'm a physician, I've been trained in internal medicine and I'm practicing but I've also got my MPH degree in epidemiology a few years ago from the University of Washington when I was an Indian Health Fellow at the Native American Center of Excellence. That's where I first met Audrey back when I was a Fellow. I am currently an assistant professor in the Division of American Indian and Alaska Native Programs at the University of Colorado Health Sciences Center and in particularly I've been working with the Native Elder Research Center and that's where my own research has been focused on.
This program also seeks to mentor junior faculty, Native American faculty who are interested in strengthening their research backgrounds. I am Kiowa from Oklahoma, Kiowa woman, I forgot to mention that before, and I'm also a hospitalist and I work in Seattle, I have a clinical instructorship with the University of Washington, I like their e-mail a lot so that's why I keep the e-mail and my affiliation there. I don't mean to confuse everybody.
My disclaimer is that the abbreviation I'm using is AIAN in my slides, American Indians and Alaska Natives. I will be referring frequently to Indians, that's kind of how I grew up referring to ourselves, if we weren't calling ourselves Kiowa's we were calling ourselves Indians.
I have a clinical orientation and my research focus is epidemiologic. This means I am not experienced in health policy and how to translate, what I see are needs, how to get those into health policy and that's what I'm hoping you all will be, the bridges and the liaisons for that.
The objectives is a brief overview of the sources of pretty much national data, I'll be talking about the Census and vital statistics and the very important role of disparities and the affect that that has had on this. And I'm going to give an example of the impact of the misclassification in terms of an unidentified disparity and that is cardiovascular disease.
Some of the challenges that you've heard before and as recurring themes that there is no truly representative report of the health of the U.S. Indian population. Collecting nationally representative data is extremely difficult, fund wise, manpower wise, what have you. We are in a geographically dispersed population, we have enormous cultural and linguistic diversity which frankly turns off a lot of researchers who were considering funding such large projects.
You've heard over and over who is Indian, who is the study going to study? The national data sources, the U.S. Census, obviously is where we get our denominator for the national statistics meaning people who self-identify as American Indian or Alaska Native. There is some various predominant Indian heritage so as Evette Joseph Fox mentioned there are some odd 4.5 million people who say they have some American Indian heritage but predominant Indian heritage is around 2, 2.5 million, I'm sorry I don't have it right off the top of my head. The Census has been plagued historically and to this date by non-participation. There's a distrust on the behalf of some communities in participating in the U.S. Census. That leads to one form of undercounting and then there's just frankly undercounting. I'm sorry, we can't get out there to knock on that door and find that person who is far away and I have to drive 25 miles so I'm not going to count them.
I think we had this discussion a few years ago when Audrey was telling us about the changes that are going to be coming about and who is Indian and how the Census is going to be conducted and there was a big debate over should there be samplings so that we could account for people that we missed because we know that Indians are going to be disproportionately missed in the Census. It didn't really happen in terms of sampling.
Also the changes in self-identification means it became more acceptable for a person to acknowledge Indian ethnicity somewhere in the 1970's and so on so a lot of people have renewed their declarations of being Indian. This makes the trends over time difficult to interpret. With each Census with dramatic changes sometimes in the denominator population occurring, where is the truth, and it's very hard to find that.
In terms of our vital event data, these are the things that we use when we describe disparities in mortality rates and we rely on birth and death certifications. But rather than having the person or parent identify what the ethnicity or race of that child or decedent is that is determined by the certifier who may do what they did with Jennie Joe, just pretty much say oh, you look Hispanic to me or you look white to me, so this affects a lot of our statistics.
Our major sources for our health status reports are clearing the National Center for Health Statistics who takes the birth and death certificates for the numerator and the denominator, of course, is the U.S. Census, so we've already talked about how there are problems in those. The Indian Health Service uses pretty much the same methodology in the reports, the trends and regional differences. These are our gold standard, these are what we use, these are what we are saying when we talk about national Indian data. This is, however, IHS service and user population specific and that's about 60 percent. People say well, 60 percent sample, isn't that good enough. Most people think that rural and urban differences are great enough that you can just extrapolate from the reservation based communities to the urban based communities.
The urban population would be about 40 percent, and when I'm talking urban we know there are some urban reservations, when I use the term urban here those are those communities that are not directly served by the Indian Health Service facilities, so that there data is not captured or compiled by the Indian Health Service. National Center for Health Statistics has made attempts that I have a hard time sorting out in terms of urban Indian health, and again, that means there are some urban Indians that have access to IHS direct care facilities or tribal facilities and some who don't, so the urban picture is murky. The few that have been published have relied on academic collaborators basically and there are only a couple of those out there and they come from one metropolitan area and are those exportable to other communities, we don't really know that.
Talking about the areas of vital event rates, you've heard misclassification, misclassification, misclassification, but it's a huge problem. In the National Vital Statistics Report, the final report on mortality that was just out this month, it's acknowledged that the estimates of the approximate effect of the combined bias due to race, misclassification, and under enumeration leads to about a 21 percent underestimate of mortality rates for American Indians and Alaska Natives and for comparison there is a slight overestimate for white and black mortality rates which range from one to five percent.
People have mentioned some of the studies, Infinite Birth, in one city, 37 percent of Indians who were Indian infants on the birth certificate if they died the were classified as something else. There are similar documented problems for adults. This isn't just limited to the mortality problems. The registries, people I have mentioned before, injury and cancer registries, also misclassify Indians as non-Indians.
In causes of death, this is another source of error that we have. There may be less misclassification of race if you die from a problem that is recognized as an Indian problem. For instance, if you die of an alcohol related disease or condition and you're American Indian, your death certificate has a good chance of being appropriately identified. But if you die from cancer, you don't, you might get called something else. Also, causes of death, there seems to be possibly a high rate of dying from who knows what, the signs, symptoms and ill defined conditions is an ICD-9 category, an ICD category, from whichever, 8, 9, 10. There was one study that actually looked at the rates of death from signs, symptoms and ill defined conditions, this was a New Mexico study, and it was very high, disproportionately leading cause of death, we're talking about over 100 per 100,000 so it was a huge cause of death. What were those deaths? They were undoubtedly included heart disease and other diseases that weren't captured.
We know that from the National Center for Health Statistics report that disparities in mortality by race in terms of dying from signs, symptoms and ill defined causes, I think for the age adjusted rates for blacks is 18 or 19 percent but for white is about 11 percent. I don't know what it is for Indians; I couldn't find that in my search.
Accounting for misclassification. IHS did a misclassification study of it's own. The IHS records were compared to the National Death Index which is, of course, where the death certificates are sent. 11 percent of the IHS patients were not even captured in the National Death Index so even aside from racial misclassification issues, they also note that misclassification varies widely by region with the highest rates of misclassification occurring in California and Oklahoma, which are the two most populous Indian states, lowest in Navajo areas and there are probably reasons for that that again, I really don't have time to go into those. But now the IHS is adjusting for misclassification in their report and it's just a fabulous addition to our understanding of diseases and I'll talk about that a little bit later.
In terms of identifying data needs, this brought to my mind a little clinical pearl that every third year medical student hears, it's actually kind of a cynical pearl but I won't scare you with those details, but it goes, you can't find a fever if you don't take a temperature. But all of us know that some patients are so sick you don't need a thermometer to know that they have a problem.
So for the patients who you don't need a thermometer to find that they're very sick, are these well recognized, well known real well recognized, identified areas of health disparities. There's been diabetes, unintentional injuries, suicides and violence, alcohol and substance abuse and life expectancy. These are from the RIW Transitions Report that you mentioned we would be perhaps discussing.
What about problems that may not be quite so recognized as Indian problems? Have we had misleadingly low mortality rates from certain diseases? And I'm going to present the case of heart disease which I think has been an under recognized problem. When I'm talking about heart disease I'm now talking about the atherosclerotic heart disease that is prevalent now.
Such a heart disease was a minor problem for Indians in the early part of the 20th Century. It was virtually absent in many early studies. The prevalence rates were low, mortality rates were low and as we found increases in risk factors, such as the documented increases in diabetes mid-century last year we still weren't documenting or finding that heart disease rates were even comparable to the non-Indian rates. So this actually, even in the '80's, people were saying wow, how are our Native Americans protected against heart disease, is it there genes, and of course people were going running to look for different equilipid(?) proteins. Is it the diet, because come communities may have had more truly traditional rather than commodity-based diets. Is it exercise, you have to go haul all your own firewood and water, doesn't matter what you eat, you're going to get a lot of exercise. I guess part of my argument is that this was in part a factitious protection in that it was a reflection of poor data.
And heart disease is extremely important. It is the leading cause of death for Indian populations and it has been for many years. Mortality rates are going up unlike rates for Caucasians. There was a celebrated decline in mortality rates last year, the lowest in quite some time, but in many communities, well I don't know about most, but in many communities rates of mortality of heart disease surpassed the U.S. rates.
This is a compiled slide based on the Indian Health Service data from their Trends in Indian Health series over time starting in 1986. The top line is U.S. all races mortality rate, the middle one is the white and the lower is the Indian rate and you can see, Indians weren't dying at all from it back in the '80's compared to everybody else. You see the nice decline from the U.S. all races and white rates going down paralleling each other. You see what overall you might term to be a fairly flat rate for Indian populations.
However, when you look at the adjustment for misclassification, which the IHS has done in the last couple of series, you see something that may be quite different. The bottom three lines are the same as the three lines we saw on the previous page, I just changed the scale, but now we've added the top line, is actually the adjusted rate for misclassification. And as you can see, those rates are approaching 200 per 100,000 and they actually probably are going up. If you look back then, if you see where 200 was, it was way up there. So there is a potential, pretty large discrepancy that we're just now becoming familiar with.
An illustration of the wide geographic distribution, the marked diversity that we have in diseases that this is about the only slide that I can graphically show it on. The light green bars are the age adjusted rates but not adjusted for racial misclassification and you can see there were wide variations to begin with. Once you adjust for racial miscoding you see how much higher the rates are and even larger the differences are from the Miji(?) area which is approaching 300 per 100,000 compared to the Albuquerque area. You see also the size of the bars shows you the differences in rates of misclassification per se by IHS service area.
More about the heart disease mortality. Heart disease becomes the leading cause of death for Indians at age 45. It is not the leading cause of death in the general population until age 65. This means that Indians are dying from heart disease from a younger age than it is the older age. And also, in the past, when this has been found, this is not a new finding, that middle-aged American Indians were dying from heart disease people thought it must be alcoholic cardiomyopathy and maybe that is still some of the case. Alcoholism is definitely not a problem I want to minimize, but I think that the mindset that Indian problems are alcohol related may have made us miss some of these other problems that might have been larger. I would have to think the Strong Heart Study which I'm lucky to be, I helped review deaths there, this is a cohort study for American Indians Alaska Natives in three different communities who are ages 45 to 74, specifically to look at heart disease and risk factors and I review the deaths, the charts, the deaths, to see what they die of. And when they're dying of heart disease, it's aschemic heart disease, it's not alcoholic cardiomyopothy.
The mortality rates have been higher in this age group among Indians and Caucasians, again for a long time so the other point is that this is not just an older Indians disease. One of the major disparities that we have is that in the years of potential life loss we lose a lot of people at young ages to injuries and violence but we're still losing them even in middle-aged, prematurely due to heart disease. I'm not showing you the data but actually currently, mortality for our elders, people who have somehow managed to live to 65, 70, 85, their mortality rates from heart disease are lower, in fact, their overall mortality rates are lower than the general population. In epidemiologic terms this is called the survivor effect and it's common in many, if not most, of the minority populations.
Anyhow, this is a graphical representation of the increased rates for mortality for our middle aged American Indians compared to the U.S. white and all races. The top bar is the adjusted rate but even if you don't adjust for misclassification you see that there was a disparity in these younger ages. The same thing is for the 55 to 60 year olds and again you notice that the X axis, the scale is much different, so we're still talking about pretty high mortality rates from heart disease in these age groups.
Moving on to other sources of data. The National Data Source is the population surveys what are relied upon to help identify the determinants of disparities, things that might collect socioeconomic information which Jennie mentioned, is pretty key and frankly doesn't necessarily work in Indian populations the way it does in the non-Indian populations. But these have been very valuable sources for U.S. national report cards, or fingerprints. The Behavioral Risk Factor Surveillance System, the NHANES, the NHIS, all fantastic studies and they rarely adequately sample Indians and essentially are useless.
One of the hats I wear at the University of Colorado is I'm looking at large data sets and seeing if they have Indians in them so we can write papers on them and I'm finding that there are very few that will have any kind of meaningful inferences that can be drawn from them. People have been very clever for the Behavioral Risk Factor Surveillance System for example. They will pool data across years so that they can get appropriate ends for Indians but that's a telephone survey so you'd have a pretty selected bias. The prevalence of telephones among the American Indian Alaska Native population is much less than it is for the rest of the population.
So in summary, I hope I've kept it to the 20 minutes. The vital event data is just disproportionately flawed for Indians so when we talk about disparities in health, disparities in data also should be addressed for us to really get a clear picture. I think there may be more unrecognized disparities than we are aware of.
The National Health Surveys grossly underrepresent American Indians and Alaska Natives. The approach to handling this has been for some communities to undertake their own health and nutrition survey, for example Navajo Health and Nutrition Examination Survey was done. Great source of information for the Navajo tribe. What does it mean for Pine Ridge? So the generalizability of these studies is limited.
In terms of getting this message out or getting funding it's the problem. No one really wants to fund a study if you can't generalize it, if you can't make meaningful inferences elsewhere and to appropriate fund multi-center sites just makes funders shudder and break out into sweat and laugh nervously at the thought of what a crazy idea, you're just going to have to deal with it some other way.
The other thing I find most concerning is effective interventions for some disparities, namely things like suicide and alcohol abuse, are unknown. These frighten me. I'm a clinician. I like to be able to find something I can do something about. Diabetes and heart disease I know how, once you have those I know how to help you get rid of it. I know what I can advise you to prevent them. I'm not so sure I know how to do this for suicide and alcohol abuse, which are huge problems and incredibly disproportionate problems for some communities in Indian Country.
So for the future I'm going to echo the same theme. Support of national data networks that are reservation based and urban based that they include both communities and use compatible methodology is what we need. It's costly and it takes a lot of expertise and a lot of work but if we really and truly want to attack head-on disparities that's what I think we need to start doing.
The community networks that are already in place are wonderful. They need to be supported, expanded if we can at all do that, and I'm talking about the epi-centers, there are urban networks which I assume Beverly will be talking about. The Native American Research Centers for Health which requires partnerships with the tribes have also proven to be, well they've just been started, and we'll see what they prove to be in terms of helping us understand diseases. Having reviewed some of these it's just fabulous to look at the initiative and the drive and the commitment of the communities, they're really excited about this level of research but it requires, you have to have tribal entities governing what they want to look at. I think supporting community priorities is number one. Telling people they have a problem go fix it is different than people saying this is our problem help me fix it. It's quite different.
So I think that's it and I appreciate your time and attention. Thank you very much.
DR. MAYS: Great. Again, thank you for a presentation that is very helpful to our committee. What I'd like to do at this point is to take a ten minutes break because we want to keep our own health. So get up and stretch, do whatever we need to do for about ten minutes and then we will resume. At that time what I'd like to do is to make sure -- so that we can do questions and answers and I will check and see if we have some questions via the internet. The address again is swilhide@magnasystemsinc.com. Than you very much and we will return in ten minutes.
[Brief break.]
DR. MAYS: Ok, I think we're back now. Those of you on the Internet I hope you're back with us too. What we want to do now is to have a question and answers, open it up to discussion. We'll start with those of us at the table. We have mikes for those in the audience and we welcome those individuals in the audience to raise a series of questions. And this will be to all three presenters so hopefully your mikes are on at the table as well as for the audience.
Questions?
DR. NEWACHECK: Well first let me thank all three presenters. These were excellent presentations, we got a lot out of it and we appreciate you putting in the time to put together the presentations. They're very helpful.
My work is principally using national surveys, especially those by the National Center for Health Statistics and I'm well aware of some of the problems each of you mentioned with the small sample sizes and the problems of statistical insignificance when you get to small populations like American Indians and Alaska Natives. One of the ways that the National Center for Health Statistics has dealt with this problem in the past for some minority populations is to do over-samples and that's done for Hispanics and Blacks routinely in some of the national surveys, but not for American Indians and Alaska Natives typically.
I'm wondering first if each, all three of you, could comment on what you think would be the usefulness of an over-sample of American Indians and Alaska Natives in some of the bit surveys like the National Health Interview Survey whether you would support that or not. And I recognize that there are issues related to some of the geographic differences within the AI population and the Alaska Native population but I'm wondering if the three of you would support that and endorse that.
The second way that the National Center for Health Statistics has dealt with problems of small populations is to do special surveys and Dr. Rhoades mentioned one of these, or at least a variant on one, for example, the National Health and Nutrition Examination Survey has done a Hispanic HANES, or a Hispanic Health and Nutrition Examination Survey that was devoted just to the Hispanic population. You mentioned the Navajo population. But I'm wondering again if whether it would make sense, if the three of you would comment on whether it would make sense to do any special surveys of these populations so we'd have the kind of disparity data that we have for the rest of the population.
DR. MAYS: Excellent. We can start with any one of you.
DR. JOE: Well, I'll say a little bit about it. I think both of the recommendations would be very very helpful. It's been my experience though that any time we've ever had anything like that somebody had to come up with the extra dollars. And I know that a few years ago in the National Health Expenditure Study there was an effort to do a special American Indian Alaska Native sub sample study. The particular set of data has been very valuable but I don't know how expensive it is and that's probably one of the key barriers to doing some of these things more frequently.
DR. RHOADES: It would be very helpful. The survey of American Indians and Alaska Natives was a companion to the National Medical Expenditure Survey in 1987 when it consisted of three rounds of door-to-door, face-to-face interviews in a sample that was statistically representative of the IHS service population. So again, it was much of the IHS service population. It cost beaucoup bucks in 1987 dollars, I actually used it for my masters thesis in epidemiology looking at some cultural factors associated with usual sources of care and I also have some data that's been linked to the National Death Index for five years so I'm trying to look at mortality studies from that. Statistically, the sampling design is a complex survey design and so it has to have special statistical methodology to use it and basically I was limited to 11 degrees of freedom so looking at variables that affected health status, if you look at economic status and you divide into categories like three, that's three degrees of freedom, you're only left with eight. So there are a lot of technical difficulties but if it could be done it would be fantastic and you would have to have a lot of expertise in terms of like the National Health Interview Study, things that rely on urban populations, it's relatively easier to over-sample Hispanics and African Americans because they are more likely to live in Census tracts, whereas in many urban locations, there is not Indian town for example. They are more dispersed, so it's an even greater challenge in finding an urban population denominator. But I would certainly support an effort but I think it would be very expensive and convincing funders of the need for it as much advocacy as we could get to say this is going to be dollars well spent, I think would be very useful.
MS. FOX: If I can respond, this is Evette Joseph Fox. I mentioned that the National Indian Health Board Study on self-determination and self-governance and that study was not necessarily funded by the Indian Health Service. It did end up getting some funding from them but it really was a small budget in terms of what I see out of places like NIH or the CDC but the Administration for Native Americans provided us with about not quite a $150,000 to do the study piece alone. It was a year-long study effort. We had a Ph.D. writer working for and she was principally the one that was staffing the project, Mim Dixon, and we had an attorney who was also working on the project, Brett Shelton, we were lucky to get a doctor, Evette Rubideaux, on loan from the School of Public Health out of Harvard, and then we had a fellow who is a consultant and professor at University of Alaska, Dave Mather and finally Cynthia Smith-Mollah(?) involved, and for that amount of money though we were able to do two sets of study. We did a four page survey on tribal views on the policies of self-determination and self governance, kind of looked at the sovereign issues that tribal leaderships saw and what they were hearing from consumers about health care. And then we did a larger version, a 12-page survey of the tribes looking at management and quality of care issues and training and technical assistance and finances. So for that small amount of money, I don't know how we did it, we surveyed every tribal government and we had 210 tribes participate but we had to provide small grants to the area health boards to take and bring people in. I guess what I could say it was a national study effort in a different dimension of policy issues but we did look at key data, we thought there were common sets of quality of care indicators that you could measure like waiting time in clinics, whether or not mammography's were available, that type of thing, but there are no set quality of care indicators for the Indian Health Service, you'd think with JCHO and other ambulatory accreditation there would be but out there they are out of our pilot study to lead into the overall study of 23 hospital systems in Indian Country there were no set quality of care indicators so we kind of created our own to measure and we did see that there was measurable improvements but I guess for just a small amount of money I think you can do national survey efforts and they can be comprehensive and you can get a great sampling if you let the tribes feel that they have control over the data.
Now we didn't do a lot of utilization of the hard core data, we have that, but we had four volumes published and anyway, once you get the study done, then you don't really have the money to publish it and so we were lucky to get a grant to do that and I guess what I'm trying to say is that it is important to do national study efforts but I would highly recommend that they be done through the area health boards working with somebody like the National Indian Health Board. We had a lot of University assistance but it really was through the efforts of tribal leadership. In terms of special subset studies, special community efforts, I think there are tribes that if you work with their institutional review board who would let you probably conduct certain study activities, we're seeing more and more of that happening in diabetes, there are some happening through private partnerships in the area of behavioral health, but there seems to be a need for much more emphasis and I think it would be great if each of the areas had an epi-center to help them develop the data that they have.
DR. RHOADES: One follow-up comment. For the large patient level data they would have to survey thousands of individuals. The other issues that I don't think any of us raised was the issue of tribal IRB's or even the IHS IRB these days. It's somewhat of a daunting task especially if you're talking about multiple sites meaning getting IRB approvals and that's another thing that might have limited people's efforts to over-sample Indian populations in large scale studies and it's probably even more of a barrier this day and age especially if it's perceived within an individual community as something unrelated to the needs of that community. So always tribal involvement, which is very time consuming, but it should be done.
DR. MAYS: Can I ask you to just expand a little bit on the IRB issues in terms of the collection of data, what you see as when you talk about it, for example, from multiple sites, is your concern in terms of the different sites or your concern in terms of whether or not people are likely to participate?
DR. RHOADES: Well, I think it would be basically just the technical IRB approval itself. Tribes are starting to actively manage their own research, which means they are developing their own tribal IRB's. Very few tribes have had much experience doing that so there is a lot of start-up time that and learning curve for many smaller communities. Some have let the Indian Health Service IRB manage it but for an individual researcher who has to meet the, you know if they are from a University they have to get their University IRB, and then you're talking about multiple sites, you have to get 20 IRB's for the Strong Heart Study for example. To get a paper published takes 13 separate tribal reviews for that paper, so you may have written it two years ago and it may take that long before you can even submit it to a journal and that's not even talking about getting approval for a study in the first place because if one community takes six months longer than another community, you have to start your study some time anyway, the time lines, if you've got 25 different time lines for your study, it would be a logistical nightmare. Cooperation collaboration between tribes consortiums would be the way to go with that and I think the Northwest Portland area Indian Health Board has, no they don't, do they have their own IRB for all the participants in the Northwest Portland Area?
MS. FOX: I'm not exactly certain what their arrangements is for the IRB's, different tribes have their own IRB.
DR. RHOADES: But their research comes from their epi-center right now which has been doing a lot of fantastic work which is tribally driven since it's tribally initiated they didn't have to get their own tribal approval for their projects.
DR. JOE: As far as I know there's actually only one official tribal IRB and that's Navajo. Everybody else has a health committee. There is tremendous layers, not only do you have to get your approval from your own institution if you're a University or College based but each tribal community either has a health committee or tribal council who approves research and over probably 90 percent of them usually request that they also get to see whatever's going to be published or sometimes even present it at an official or any kind of professional conference. So I think it depends. I think some of us are able to collaborate with tribes and take the research issues that they are interested in and work with them so the mechanism in those places don't take as long but I can understand Dorrie's comment, it is an additional layer. But behind that concern is really the reason why is that many Native people feel like research has really done them injustice and this is one of the ways that they are able to have some input and also demand that research is done that benefits them. So the IRB process is probably the most appropriate way for them to express those concerns.
DR. MAYS: Let me before I turn to see if there are other questions.
MS. FOX: I wanted to respond to the question as well. In terms of tribal IRB's, the secret to our success with the study that we did in 1998, was that tribal governments felt that they were involved in the research design, they weren't necessarily just the subject of a study. I guess the point is if the tribes feel like there is mutual respect and there's consideration of their views, they will go ahead and participate in study activities because we at every stage never went forward without their agreement to the survey design or to the research data. There were some tribes who weren't happy about some of the conclusions but they felt with confidence that they were involved in the process and the development of the study effort.
DR. MAYS: Before I turn to some other questions, questions that have been passed my way so I'm assuming these are coming from the internet and this one actually related to what we're talking about so I thought I'd put it out there now. And it says, given that major surveys don't adequately reflect American Indian Alaska Native data needs, what new or innovative data collection methods would you recommend that would provide adequate numbers while still protecting confidentiality?
MS. FOX: I think I'll go ahead and jump in on this question. I think the subject that we talked about earlier, the matter of the tribal IRB or the Indian Health Service IRB is that people, Native people, want to feel that their information that they're going to release is going to be protected. I think for us that is why we had such a high sample and it doesn't take a great deal of money but there is probably a little bit of suspicion about University based institutions because they are state managed and state controlled often for the most part or they are privately controlled. They may not have tribal leaders who represent their views on their Board of Directors and so they are just suspicious. I that there was research, there were clinicians who were probably collecting blood samples and tissue samples in the early '60's which has created great question about the national human genome research project because we are aware, we have professionals who've been to these conferences where it's almost like they have samples and they will trade those samples to enhance there research. This is what people like my mother think that there's vital sacred information about Indian people that is being studied and looked at from a very clinical research perspective and there is suspicion already in the United States about cloning and genetic studies and how far do we split the information down. Unless you can give tribal people an opportunity to know that they have control over what's being released they are willing to participate and I think that's the primary essence of new or expanded survey data collection efforts.
DR. MAYS: Great, anyone else want to comment on that? Dr. Rhoades?
DR. RHOADES: I'll throw in my two cents and maybe Edna and Beverly might even be able to answer this question. But I would see as within infrastructures being in place within the IHS and infrastructures being developed between urban centers that techniques for over-sampling should somehow enhance those existing collaborations and that's about as good as I could come up with. If I knew the answer I'd be in seventh heaven.
DR. NEWACHECK: On that same topic, Dr. Joe, in your presentation you had a little bullet about data sites in urban and rural areas. Is this kind of what you were getting there is that there would be collection sites in different perhaps Indian communities where you could do longitudinal data collection or something on that order?
DR. JOE: Yes. I think, I guess what I'm, I like to look at research in two different ways. I think the whole issue of confidentiality is a very critical one and especially when you are talking about small sample size I think it's an overriding concern. I think some researchers in the communities have figured out best ways to do that and some tribal groups they would like to say instead of a specific Apache community they say Western Apache's. I think that's an agreement that's made so that it takes care of some of those issues. The other thing that I mentioned about data site is really the kinds of data that would really be beneficial that could have more meaning than just getting the prevalence and mortality data, but we really want to get a look at what is the support network for this individual who has this particular health problem. What kind of intervention are taking place in that community that seems promising so that we have something that's ongoing and not do a lot of these short-term studies that give you little information. I think Strong Heart Study has been able to go into other areas beyond heart disease. Unfortunately you can't do that everywhere. You have to have to commitment from the NIH, the funding source to do that, and the investigators have to be very innovative to build on the kind of research they've done to attract other parts of NIH to support them. But we really need some sort of community-based kinds of study. We have lots of information about people dying; we don't really have a lot of information about people living.
DR. MAYS: Just a question. Given that one of the things that you talked about is the population being young, and I think in general no matter what group we're talking about, getting younger individuals to participate in research sometimes really is a struggle. Can you discuss a little bit about what you think would be the types of research that would be easier or more difficult to get younger American Indian and Native Americans particularly in the urban areas and what research raises red flags in the sense of it's very difficult to get participating and any suggestions you have of how we would be able to increase participation. I'm talking now in urban areas.
DR. JOE: Consumers or researchers?
DR. MAYS: The participation actually by the individuals that we're looking for who would be American Indian or Native Americans who reside in urban areas as participants.
DR. JOE: I think one of the things that we oftentimes frame what we're looking at in the way of the health status of American Indians is that we really don't talk about sort of the general demographics. The peer age pyramid is reversed for American Indians Alaska Natives so we have a lot more younger people than we have older people. The National Health Agenda is often geared at the older age population and so consequently I think our health report card oftentimes sort of emphasizes certain things that we want to stress that's comparable to the nation instead of what's really going on at the ground level. I had to do a paper not too long ago, taking a look at health status of young American Indian Alaska Native males and this is a population that if somebody ever took the time to look at would come away saying, we're really not doing enough.
That people who use the health care services as you all know, are female and children and the younger male population you are more likely to die of car wreck or substance abuse or something so they get left out of this stream. That's why I'm saying that that demographic factor is very important but they really don't pay enough attention to it and that's my point about the age pyramid.
MS. FOX: I'd like to say just I know and I worked about eight years in the United States Senate before coming to the National Indian Health Board, and we had worked closely with the Office of Technology Assessment to do studies of adolescent mental health to sort of complement the adolescent mental health studies that were taking place on Capitol Hill, because I have a background in behavioral health and it was of interest of me. The University of Minnesota did a study of 14,000 American Indians and Alaska Native young people looking at their perceptions about the use of alcohol and what was important in terms of prevention, what were there problems, and it was more in the behavioral arena, but a lot of people at that time, and this probably was in 1988, 1989, because I think they released the study in '90, felt that the instrument was used in the school systems, but there were a lot of people and Indians, my colleagues on the committee, who objected to the study principally because they didn't feel that it looked at, it didn't look at issues that Indian kids would have highlighted.
I still thought it was a landmark study in terms of the number but I still think it speaks to the issue of having tribal control over the data and the tribes, one thing we know we do support is our kids and if you rally around young people and try to find solutions to problems for young people, your children, your future, you usually get people to look at serious issues that probably nobody else would look at in the adult population.
DR. MAYS: I'm going to invite questions from my colleagues here at the table and if I see none I'm actually going to then invite the audience to raise some questions and then if I see none I'm going to go to the questions that have been passed to me. So let me just check and see if there is anyone at the table that wants to ask a questions. This is Dr. Huertin-Roberts.
DR. HUERTIN-ROBERTS: This is probably very naïve. Would it be possible to build some sort of infrastructure, some sort of research consortium, of various agencies that collect data, tribal groups, to get together to work on some common data collection that's standardized and useful but also that would help to construct a research agenda and a research plan, I mean that is obviously participatory, you couldn't be something that's just government agencies alone it would have to be a collaboration, but it seems like there's no overseeing body, we're sort of doing this very piecemeal and it seems that there should be some way for all the players involved, all the various stakeholders to be a part of it and to come up with a plan.
DR. BREEN: Isn't that what the National Indian Health Board does?
MS. FOX: We provide for the collective opinions, we try to represent tribal views in terms of health care in general and we do do our own independent policy and research analysis when it's funded by institutions, because I just don't have a budget for doing that. I have a small operating budget and it's amazing what we do with that but we were funded by the Agency for Health Care Policy Research and I know they have a new acronym to look at health care policy research concerns and we were asked, this was probably six years ago, to help them identify the leading health priorities for that type of research and we anticipated that as a consequence of that meeting that there would be increased emphasis on issues related to health care policy and we participated in minority health care policy initiatives and actually the African American and the Hispanics at the meeting were amazed that we had an agenda to look to but in terms of actually seeing money develop as a consequence of that agenda, it never materialized. It was just the idea of statistically insignificant, it wasn't that important.
DR. BREEN: What I was thinking, I thought Suzanne's idea was a useful one, but it seemed that you already had built this consortium and it might be possible to fund that consortium at a higher level in order to accomplish some of the things. You weren't very specific Suzanne but we could always get specific.
MS. FOX: About half of Indian Country could participate in that effort now as a consequence of the new NARCH and epi center grants but when you don't have everybody supported with the epidemiologists it's hard to do that kind of work.
MS. HUERTIN-ROBERTS: I think what I was thinking of was not just an overseeing board but actually a consortium of groups that are actively conducting research or would be enabled to conduct research in some organized systematic fashion, but also with input from all the tribal peoples.
DR. BREEN: Well, what I've been hearing and I'm just putting this out here for maybe it's right and maybe it's wrong, but it seemed to me from the presentations that American Indians would welcome funding, staffing, technical assistance, but would like to control the agenda and I think that's pretty clear and so that's why I was thinking a group like yours which is coming out of the communities and already trying to organize these communities into a body that can work together because the IRB's, many IRB's are always a problem. Many agendas are always a problem so you need some group and maybe it's not going to cover all of Indian Country initially but you suggested you had 40 or 50 percent which is certainly a good start and if that seems to work well then that can be extended and expanded to eventually cover more. Because even though this is, it was put in terms of this is an insignificant population because it's a small population, but at the same time, as it's spread out all over most of the West but all over the United States, it is a small population. So the problems are huge but it's not as expensive as if it were say the white population that had all of these difficulties. That was a little bit of a digression, sorry about that, but it strikes me that, well it goes back to my point, is it the case that technical assistance, staffing, funding, these are all welcome, but the agendas should be controlled by the Indian community? Is that correct in what I'm hearing?
DR. JOE: I think that's partly correct. I think the other thing is we're well aware that you need collaboration and each partner that sits at the table has it's own mandate and that is probably the most difficult part is to come away with everybody agreeing to give a little, negotiate a little, and that's usually the problem. I think we're dependent on the National Center for Health Statistics, we're dependent on Indian Health Service data collection, we're dependent on state data collection systems, but those people have thoughts and understand that the limitations of the data collection that they provide, they really also need to give a little so I think in some cases it does sound like it's easy to solve but I know it's also difficult. I think the thing that most Native communities that I know I work with are saying they want control, what they're saying is that they want to ask the questions, they want to be able to use this data so they wanted to have some say about what's being asked so that they'll say that's an important question, that will help us do whatever it is.
DR. MAYS: I'm going to invite participants in the audience if they either have a question or a comment before we kind of draw this to a close. If when you go to the mike you could identify yourself and just please feel free to line up at the mike. Probably after this we're going to close for our first set of comments and then we'll open it later.
MR. STIFFARM: Good morning. My name is Johnny Bear Cub Stiffarm.
DR. MAYS: I'm sorry, I didn't mean to stop you, we'll ask them to be brief only because we have actually four of you so we'll make sure that we can come back later in the afternoon and continue but we just want to make sure now, that we try to keep a little bit towards our time. So, please feel free.
MR. STIFFARM: The question I have is all this morning I have not heard any references to tribal community colleges or institutions within both the urban Indian community or the reservation based community. How do you see their role in research? Do they have a role in research? The reason why I ask that question is because these are the people who have access to the local tribal communities, whether they be the urban community or the reservation community, and especially to, particularly to, the American Indian youth and our young adult population. They have a deep understanding of how to work with them and they can work with them in being able to get the vital information that they need and I have not heard very much of a reference to that resource at all this morning so I want to know how those institutions or those organizations would play in the research collection. Thank you.
DR. MAYS: I'm going to add that there's also another question that came in which is very similar in terms of a recommendation made to train more American Indian and Alaska Native research, tribal colleges and universities tend to be two year programs. What are your thoughts about establishing Native serving institutions much the way the Hispanic serving institutions have and receive emphasis? How can we accomplish that? This is definitely a theme.
MS. IRON CLOUD: Good morning again. I'm Patty Iron Cloud, Oglala Cultivation, which is Pine Ridge. I want to thank the speakers and thank all of you for being here, and thank you for this hearing. I don't have a question but I have a comment. I don't know who is in the audience on their computers but what I want to say is, shame on you America. Shame on you for letting my people die and getting to this point in our health disparities. I mean this is a shame, this is a national shame and I'm not addressing this to any of you. I have all the respect in the world for you and I thank you for what you are trying to do.
The life expectancy for a woman at Pine Ridge is 56 years old. I want you to look at me. I am 58 years old. I have lived two years past that life expectancy by some intervention by God I guess, I don't know, but I am so thankful to be here and to be alive. I am trying my best to do what I can for this situation that is going on in America. And I know President Bush isn't on the camp because he's here and I wish he was because I'd like to say this to him. But thank you for your help and I do want to say that I also don't want to see people blaming us for the data.
In 1969, my son was born in Los Angeles, they put him down as white. I would not let them, I said no, he is not white, he is American Indian. That was 33 years ago. They said we only have three classifications. White, Black and Asian, but it was a different word for Asian. I said my son is none of those, he's American Indian and I want American Indian on his birth certificate. I tried to give the right data back then and they wouldn't let me and they held it against me because I fought them. They wouldn't let me take my baby home until I signed, because I wouldn't sign. They told me you can not take your baby home until you sign this, you can leave but you're baby will stay here. So I said I will fight this, and I did, I fought it and fought it and I never ever could anywhere. Well when I tried to send for his birth certificate and I was in Porcupine, South Dakota, and he was about 15 years old and I knew he was going to need his birth certificate for his future life, they would not ever send me his birth certificate, I don't know why, they kept saying they would send it and never did.
Finally after about a year, of telephone calls and talking to everybody in California, I had to fly to California, to Los Angeles, go to Hill Street, anybody knows LA, there's vital statistics on Hill Street, had to go there, stand in a mile long line, with a lot of other people, mostly Latino who weren't like me and tried to write letters, they were smart, they went right there. Stand in line, and it was almost the end of the day, and I thought I've got a flight out of here tomorrow I've got to see this office today, I didn't know if I would make it or not but I did and I got his birth certificate and that was the only way I got it, but I tried to give the right data. Again, I just want to thank you.
DR. MAYS: Thank you.
MR. JOHANSSON: Patrick Johansson, Office of Minority Health and I was just wondering if there are any successful models of collaboration between states and tribes and/or urban programs in data collection using standardized instruments such as the BRFSS that have been modified to suit the needs of the tribes.
MS. DUPREE: Good morning. Thank you for giving me this opportunity. My name is Dorothy DuPree. I'm a member of the Acenabois(?) and Sioux tribe in the Ft. Peck Reservation in Montana but I'm also the senior policy advisory on American Indian Alaska Natives for the Centers for Medicare and Medicaid Services. I agree with what Jennie Joe was talking about relative to it's not really one solution, it's not an easy solution, there are many, many, many different partners and many of them are not aware of. In September of 2000 the Department of Health and Human Services held a conference regarding data on the American Indian/Alaska Native population here in Denver. It was sponsored by at that time HCFA and the Indian Health Service. We had a number of different agencies within the department as well as tribal leaders, as well as tribal organizations that met over a period of three days talking about accessing, the difficulties of accessing data. We came away from that with an agenda but unfortunately it got caught up in the turnover in Administration and has never really gotten back on track and I think it's important to get back on track with the agenda that we walked away with.
When I look at the Centers for Medicare and Medicaid data on American Indians, there is none. There is very little, there's many reasons for it and I think one of the primary reasons is because of the Office of Civil Rights who are always saying the Office of Civil Rights doesn't allow states to collect data to check whether or not it is an American Indian or an Alaska Native and then we go back to the Indian Health Service for our data because they as an agency are required to check and verify whether or not you're Indian in order to get services. But unfortunately with the Indian Health Service they don't serve all Native Americans, as we've heard over this last week, it's only approximately a little less than half, so we're missing a vast base of information. Within CMS every agency has to look within itself to see what it is that they can do and even within agencies there's really a split as to what they are allowed to do so there is a fear factor that's at play here as well and I think we as Indian people begin to work for these agencies, are helping them deal with the fear factor but again it brings it back to what Jennie Joe was saying again is that we as Indians really have a great deal of effect in how we work with Indian data and it should be done at a local level but there's also many, many other partners that are involved.
I'll give you a little bit of insight about CMS and what we do in Indian data given that we have them are really looking at, when we pay for services, CMS has a wealth of information for researchers but when they come to research Indians there's none and part of that is tied up into the way we pay for services, because we pay you to tell us the date, the service, you tell us the individual and we'll believe the fact that because they received services at your Indian facility that they are Native American. But that's it, we don't ask what services are provided, we don't ask for health outcome or anything so it's lacking.
As an agency we have to work with tribes to really look at is it more valuable on how we pay you in keeping that the same now or is it more valuable in the long run to pay you in a different way and to collect this data so that when we key into this provider who we know is providing services at a local level that we know exactly what those services are we can begin to measure it and then open our doors. Anybody is a researcher can access our data but if it's not there for American Indians there's nothing to access.
Thank you for allowing me this time.
DR. MAYS: Great, thank you. We're just negotiating time here because I think we're all getting very involved but at the same time, I don't want to rush us out of here, but at the same time some people I know aren't going to be able to be with us in the afternoon so I want to make sure you have a time to comment.
Let me open it up now to those of you sitting around the table in terms of responding to both the questions and the comments that you heard. I think at the most we probably shouldn't take any more than about ten minutes and then what we'll do is try to resume any other discussion we can during the break or else in the afternoon. Some of you will be with us this afternoon, but those of you who aren't why don't I make sure that you start by giving us your comments.
MS. BURWELL: This is Audrey Burwell. Some of the issues surrounding race and ethnicity in the data collection instruments and vital records, I think with the revisions to OMB Directive 15, within, by 2003 everyone receiving federal funds should be collecting at a minimum the OMB standards for race and ethnicity. I'm just saying this as food for thought because there are some discussions going on concerning how far reaching that is, how mandatory is mandatory, given that it is mandatory, that every data collection effort that receives federal funds will collect OMB minimum standards, do you think that would help in terms of your sharing information between tribes and the states?
DR. MAYS: Ok, we're open now for comments relative to all the questions that are on the table, so when you speak if you want to answer more than one question, now is the time for that. When we end you will have had a chance to answer any of the questions.
MS. FOX: Evette Joseph Fox. The issue that the national data sets and OMB standards, well IHS has a system called the Resource and Patient Management System, RPMS, and it does collect some of those kinds of data but it was never developed as a cost accounting kind of data program and so it's been problematic in that you can't sort of assess what the cost of care is very well and there have been major improvements because of information technology although the IHS hasn't gotten a lot of that money, they're trying to make improvements for business purposes yet they are also trying to do it for meeting GIPRA requirements. The problem is is that it's not applied nationally and tribes in their own initiatives because they are taking on great risk, went out and got their own off the shelf systems to do the same thing. We're trying to figure out why they can't bring in the guys that read computer data and intermingle and make it mix and work and so I think IHS was trying to do some that but it still has a long way to go.
In terms of the question Johnny Bear Cub Stiffarm raised, the tribal colleges, we see them as key partners, we know the urban Indian health programs are very important, it's important to get more American Indian and Alaska Native health researchers out there and we think that they serve a vital role in that capacity.
Finally I just want to say in terms of models between states and tribes, we've done a ten state study as well as a nine state study and the issue of Medicaid managed care and SCHIP programs. We've looked at best practices from a tribal, from an urban, as well as the state's perspective in improving and enhancing Medicaid and managed care policies as well as data. I think there are very few partnerships like that that have occurred in Indian Country but we think there are some friendly state people that would probably be willing to be a part of that effort, but it, again, it gets back down to whether there's money to do that. Those are just sort of my responses.
DR. MAYS: Thank you. Anyone else?
MS. PAISANO: This is Edna Paisano. I just want to sort of concur with all the presentations this morning that research with American Indians and Alaska Natives is complex and it really is important that all the federal agencies because of the trust responsibility, take upon themselves to ask questions, what are we doing within our agency for research? Within IHS it was pointed out several times IHS does not have a research budget so therefore we're very limited in anything that is done but also with the points about sampling for American Indians and Alaska Natives is very difficult and also with the identification and I think a lot studies may use different definitions as was pointed out of who is American Indian and should it be in the universe of our study and of course different methodologies for collecting data. Doing it by telephone is really not successful, doing it by mail is not successful, usually a face-to-face interview is more successful but also again, it's who is asking, who comes to the door and asks the questions. So there's a lot of factors that everybody has to be cognizant of to really get a successful study, reliable data, and then also publishing the results. And really pointing out it really takes tribal or community participating for it to be successful.
DR. JOE: I'd like to say just a couple of things. I think the community colleges are very important vehicles in Native communities and not very many people appreciate them. I think they are kind of somewhat our counterpart to the historically black colleges and university. They are growing, they're fast, and I think it's a really untapped resource. I think it gives them a great opportunity to get young people interested in research and I know that some of the various schools are doing that and they do with very minimal resources. I am at a research University institution and commanding or getting RO1 grants or NIH grants somehow always requires you to come from that kind of environment so it makes it very difficult I think for community college to compete on that level but if there was some other resources that could be a little available as part of their educational agenda I think it would really benefit. The population will eventually because this is where you get new people interested in health careers but also in research and I think it's an area that needs to be considered at every place.
The other question, something about successful models. There have been some successful models and one of the ones that always comes to mind is probably the John's Hopkins. They've done a lot of work in the Southwest and one of the things nice about them is they bring the research expertise but they actually live in the community, they have an office in the community so there is some sort of interdependency that develops out of that kind of a relationship and I think it's a very successful model. I realize that asking higher institutions to do something similar is probably not very doable everywhere but as far as models, and I think that -- because the researchers are held accountable, they are required to make reports to the tribal council, they certainly get a feel about where the research issues are within the community, so I think that in sort of very small way to answer that question.
I think the other one regarding the mandates to collect the, the OMB mandate, I think it's too early to tell. My problem is I'm not sure if somebody who writes they are Hispanic in some population or another is American Indian how helpful that would be. My feeling at this point in time is just going to be more confusing, we're going to have to do two sets of books, those that we do for delivering health care for actually American Indian and Alaska Natives and then there will be this other sort of out there. I hope that it will lead to the data that we desperately need on people who live off reservation but I don't know, I think it's something that will have to wait and see.
DR. RHOADES: I'll guess I'll address one question that someone raised in terms of collaboration between states and I don't know necessarily tribes but at least tribal entities. There are a couple of examples, the Oklahoma Behavioral Risk Factor Surveillance Study tried to make some Indian specific, actually I don't know if they altered the questioning but they certainly made an effort to be more representative of some Indians in Oklahoma. The California Health Interview Survey, the CHIS is one that over-sampled California Indians who are very underrepresented even amongst Indian studies and it's the California National Health Interview Survey, that data set is expected to be cleaned very shortly and available for analysis.
In terms of the tribal colleges, I'm not sure exactly why, I think Jennie's comments are quite on target. I think, I hope I'm not speaking out of line here, especially since there are going to be transcripts, but some of the NARCH initiatives have actually actively included some of the tribal colleges in specifically trying to develop a cadre of young interested Indian people in research and part of their collaborations involved getting students from the tribal colleges to participate actively with these research projects that are being done in the community. So I think the last, I guess five years, have shown that we are developing what look like are going to be very successful models and it's come down to getting tribal consultation, I don't even want to say consultation, I don't know if I like that terms, but the questions being driven are being driven by the tribe and I think that's going to be the key.
MS. FOX: Before we conclude, there was one other point I wanted to make about national studies or sub-sample samples or something, is that we know from our international work that the Assembly of First Nations working with Health Canada in Canada has actually done a study of 150,000 indigenous people in Canada working closely with first nations, looking at sort of everyday health care concerns and then just trying to develop some general sense of where priorities should be for their health care systems. We found a lot of their approach and their methodology very interesting and are building relationships with the Assembly of First Nations and sort of with the National Aboriginal Health Organization, there is a model in Canada where they've got the primary people who are researchers together to talk about how to do a coordinated effort and I guess what I would say is that we are looking to that country and we know that Secretary Thompson has entered into an agreement with Canada in Geneva to talk about what the department should be doing to advance indigenous health care in North America and we know, we're looking at it with interest because Native Americans in Canada, their per capita expenditure is about $3600, $3800 per person and we want to have something comparable for Indian people here in the U.S. I guess what I want to say is that there are means for bringing collective groups together, it's working in other countries and hopefully Secretary Thompson's initiatives will help us to develop that kind of relationship with the federal research institutes in the United States.
DR. MAYS: I want to thank all of our presenters and also all our participants. I think that what has transpired has been very useful for us as a committee. I hope that, we talked about the issues of trust, I hope the trust that you put in us today in terms of sharing this information with us that we can find the ways to be effective to ensure that some of these recommendations don't fall on deaf ears. They may fall on deaf ears but we'll try and keep making sure that hello, did you hear us? So we will do our best to receive your information in a way in which we can try and effectively put it out. So I want to thank you for your time, thank you for sharing information ranging from data to personal information that has helped us to get better insight into these issues.
We are going to adjourn until 1:15. I'm very cognizant of the fact that you need to get out of here, so you will be the first presenter and we will take Q & A right after your presentation in order to accommodate your time schedule since we are off a bit, we will just switch around. So for those of you on the internet, come back at 1:15, be prepared to send us your questions right after you hear our first presentation. Thank you to everyone.
[Whereupon, at 12:25 p.m., the hearing was recessed, to reconvene at 1:15 p.m., the same afternoon, August 27, 2002.]
AFTERNOON SESSION 1:15 p.m.
DR. MAYS: Sounds like maybe we're back. Thank you very much and those of you on the Internet, thank you for your patience. I'm going to say that there's one benefit that you have in terms of being out in internet land because apparently we have lost some of our people because of the security of trying to get into the hotel, we were just discussing that, so it was a bit to get in.
Anyway, we're returning to our hearing. In the afternoon I'm just going to caution the presenters please do not be at all deterred by people in and out because some people have told me that they will be catching their flights and I mean that may even be people at the table, I'll be here throughout, but people at the table may have to leave and so we will continue on but I just wanted to let you know in advance.
We're going to be changing the afternoon schedule just a bit and that is to accommodate schedules. The way that we're going to start and I think this is probably important for those of you in out on the internet is that Beverly Russell who is on the National Council of Urban Indian Health has to catch a plane so we're going to let her do her presentation and we're going to take questions and answers right after her presentation and then we'll come back and I'll share with us how we've arranged the remainder of the schedule.
Agenda Item: Urban/Rural Indian Issues - Ms. Russell
So without further adieu, let's get started. Ms. Russell, do you want to start?
MS. RUSSELL: Thank you so much. As I stated this morning I am the Executive Director of the National Council of Urban Indian Health and an enrolled member of the San Carlos Apache of Arizona. I was born and raised on the reservation and left home and my entire family network to pursue higher education. I attended Seton Hall University in New Jersey, which you can imagine having been born and raised in a small population in Arizona, it was a big change for me and on my move to the East Coast I thought that I was the only Native American on that side of the world which to my surprise was not the case.
Upon my graduation and completion of my higher education pursuit I made an attempt to return home to San Carlos and unfortunately the job market was very minimal and I was not successful in that area. And my situation is very common in Indian Country today.
On behalf of the National Council of Urban Indian Health I would like to express our appreciation for this opportunity to address health and data needs as it relates to the elimination of health disparities.
The National Council of Urban Indian Health is the only membership organization representing 35 urban Indian health programs. The organization was founded in 1998 to accurately represent urban programs in advocacy through advocacy and training.
Our programs provide a wide range of health care and referral services in 41 cities to a population of approximately 332,000 urban Indians. The cities with the largest urban Indian population in 2000 are New York, Los Angeles, Phoenix, Anchorage, Tulsa, Oklahoma City, Albuquerque, Tucson, Chicago, San Antonio, Houston, Minneapolis, San Diego, Denver, San Jose, Fresno, Mesa, Dallas, Seattle, and Portland.
Our programs are often the main source of health care and health information for urban Indian communities. In this role they have achieved extraordinary results despite the great challenge they face. According to the 2000 Census over half of American Indians live in urban areas up from 45 percent in 1970 and 52 percent in 1980. We expect that the 2010 Census will show that over 60 percent of American Indians now live in urban areas.
Like their reservation counterparts, urban Indians historically suffer from poor health and substandard health care services. NCUIH strongly believes that the federal government's trust obligation to protect American Indians does not stop at the reservation boundary. The urban Indian community has developed principally as a result of misguided federal programs or actions such as the Bureau of Indian Affairs relocation program, which relocated 160,000 Indians to cities between 1953 and 1962. Today the children, grandchildren, and great grandchildren of these Indians are still in the cities. They maintain their Indian identity even if in some cases they have been unable to reestablish ties including formal membership with their tribes.
While most but not all Indians are enrolled in federally recognized tribes, all are Indian. They are recognized as Indian by their community. Their circumstances are principally the result of federal Indian policies. They are deserving, morally and legally, of support from the federal government in achieving the highest possible health status.
Some of these federal policies were designed to force assimilation and to break down tribal governments. Others may have been intended at some misguided level to benefit Indians but failed miserably. One of the main affects of this course of dealing, however, is the creation of the urban Indian community.
American Indians and Alaska Natives experience significant disparities compared to whites for many health indicators. Rates for infant mortality among Native Americans are nearly one and a half times those of whites and age adjusted death rates of Indians in the IHS service areas were at least twice as high as U.S. rates for alcoholism, tuberculosis, diabetes and accidents in 1992 through 1994. Also cancer mortality rates for American Indians increased between 1980 and 1997 while decreasing for whites. Disparities for diabetes are particularly striking with the prevalent rate among Indian people being three times higher than the rates for whites, non-Hispanics.
Despite the poor health of Indian people, one in three Native Americans were uninsured in 1990 and more than one third of uninsured Native Americans report that they do not have a regular source of medical care. The poor health status of American Indians and Alaska Natives compared to other Americans has been well documented. Much less is known about the health of urban Indians.
The few empirical and population based studies that exist suggest that health indices are similar for Indian people reside or near reservations and those of urban areas. One study published in the Journal of American Medical Association analyzed births, deaths, and communicable diseases in one metropolitan and several rural counties in Washington state between 1981 and 1990. This study found that compared with urban whites, urban Indians had higher rates of low birth weight infants, higher rates of infant mortality, higher rates of injury of alcohol related deaths and higher rates of tuberculosis and sexually transmitted diseases.
Another article published suggests that urban Indians experience health risks later in life related to earlier years of living on the reservation. For example, the article notes that many tribal nations are concerned about the exposure of environmental pollution, such as nuclear waste that may be associated with early development of breast carcinoma in women in their 30's or early 40's. Several factors confound the study of urban Indians and their health status.
The principal problem is the lack of clear uniform definition of urban Indians that local and state officials can use in identifying the population. Another factor that complicates monitoring of health indices is the dispersion of urban Indians throughout the metropolitan areas. A further difficulty is that residential mobility among urban Indians is extremely high, especially among low-income individuals and families. These factors combined make identifying the population and collection of accurate health status data very difficult.
Earlier there were some questions about some successful models and I'd like to take a moment to share with you a recent venture for urban Indian health population and data collection. In July of 2000 the Urban Indian Health Institute was established as a division within the Seattle Indian Health Board, a community health center targeting urban Indians and Alaska Natives. The UIHI is designed with a national focus to provide leadership and health information to increase recognition of health status deficiencies affecting American Indians and Alaska Natives through a central point of focus for health surveillance, research and policy considerations.
To accomplish this role the UIHI has three components. The Urban Indian Information Center is designed as a web-based solution to gathering and storing information on the health of urban Indians. To perform the types of data gathering and tracking needed to meet the demand for demonstrating health disparities we believe a central repository for data collection and ongoing tracking is needed. To be effective this center will require the cooperation of current and future IHS funded urban Indian health programs from across the nation as well as other information management institutes such as the U.S. Census Bureau, the CDC, and local and state health departments. The UIHI chose a web-based solution for both cost efficiency as well as ease of operation.
The Urban Indian Epidemiology Center is designed to study and analyze the data collected through the urban Indian information center and other outlets to understand health dynamics affecting urban Indians. Drawing upon the expertise of epidemiologists and statisticians and adding interpretive skills from anthropologists and sociologists they plan to establish and maintain a permanent tracking system to understand the health status of urban Indians on a national, regional, and perhaps state and local level for advocacy and planning. The Urban Indian Epidemiology Center will become the National Center of Urban Indian Health performing both routine and special studies.
The third component is the Center for Tele-Health, Tele-Education and Advanced Communication. This center will focus on best practices using teleconferencing technology to improve communication and education alternatives. The center will assess the teleconferencing, telecommunication capabilities for each of our urban Indian health partners and determine costs and other variables for future development. We believe that teleconferencing can become a cost-effective way for urban Indian health care programs to interact, share their experiences, and reduce the cost of education and training for staff by reducing the travel of out of office time.
NCUIH has lots of stories but very little hard data on health status of urban Indians. With the urban Indian line item of the overall IHS budget occupying roughly one percent, improvements for data collections is a difficult tasks. In addition, neither the IHS nor any other agency of the Department of Health and Human Services currently collects and reports data in such a timely reliable fashion. In the absence of such information it is extremely difficult for policy makers to be informed about health care issues concerning urban Indians.
Some of the recommendations that NCUIH would offer was definitely in agreement with some of the comments that were made this morning in terms of building and providing funds for expansion of current operations such as the Epidemiology Center and also looking at some of the partnerships that urban Indian health programs have formed with state and local entities as well.
Another recommendation would be looking at the eligibility of urban Indian health programs in competition for grants throughout the major agencies. We believe currently urban Indian health programs are not considered tribal organizations and are not eligible for a lot of the grants that are offered by various agencies and we believe that by expanding this eligibility to urban Indian health programs that would be more of an incentive and initiative and another outlet to collect data on the urban Indian health population.
Dramatic changes have occurred in Indian Country in the past century. Among these has been the quiet migration of Indians from reservations to urban areas so that today the majority of American Indians and Alaska Natives live in cities. Policy makers at both federal and state levels must understand that Indian Country now extends beyond the reservation borders and into America's cities.
In leaving their reservations urban Indians did not always escape the conditions that made life so difficult for many tribal communities including poverty, racism, inadequate education, alcoholism, drug dependence, teen pregnancy, etc. These conditions are acutely felt in cities as the loss of cultural identify, family support and social contact combined with the pressures of money, jobs, crowding, and competition place urban Indians at great physical and emotional risk for health problems.
American is nowhere near the lofty goal set by Congress in 1976 with the passage of the Indian Health Care Improvement Act. The purpose of this Act was to provide equal health care for American Indians whether reservation or urban. This Act and hearings such as this one we believe are steps in the right direction. We look forward to working with you and others who are concerned with the health status of minorities and I want to thank you again for this opportunity to provide testimony on behalf of the National Council of Urban Indians Health. Thank you.
DR. MAYS: Thank you very much. Again, as a presentation that helps us to really understand issues, so I appreciate your time for it. I'm going to open up with a question of course it's open for everyone else to also ask questions. One of the issues that we really struggle with in terms of the collection of data from American Indians in urban areas is one, how to reach them, and two, the identification question. I think it was earlier when Evette was talking she was saying a person might have two grandmothers that are this, one that's that, could also be Hispanic, and so the onus of how, for example, we know that that person is an American Indian is even more difficult and the extent to which we can find them becomes more difficult. Could you talk a little bit about any suggestions, issues, etc., in trying to collect data when individuals are in urban areas, American Indians and Alaska Natives in urban areas?
MR. RUSSELL: Sure. I think just as with tribal communities, one of the best ways to reach out to the urban Indian population would be to go through already in place programs, targeting towards American Indians. For example, I think the American Indian Community Health, just last week we had our national conference in New York City and we do have an urban Indian health program there, which is the American Indian Community House, and they are a multi service agency and our able to serve as the community center. As was stated before, this morning's comments and within my comments, there are no communities specifically in New York, the population ranges all across the five boroughs of New York City so it's very hard to outreach, but most of the community is already receiving services from the programs that are in place. I believe that there is successful partnership, not only in New York but as other states as well. One example would be the Behavioral Risk Factor Survey, which the Community House in New York participated in as well to reach out to that population. So I believe that, again, going through the community is definitely a way to address that and to reach out to the different urban Indians living in cities.
DR. NEWACHECK: I'd like to ask you the same question I ask our morning speakers and that is based on the fact that it's difficult to document and to understand disparities now given the small sample numbers that exist in various national health surveys, would you be supportive of doing over-sampling or expanding the samples of American Indians and Alaska Natives in national surveys and perhaps also doing special purpose surveys that would be funded by the federal government to better understand disparities.
MS. RUSSELL: Yes, I do believe that there is a great need for those surveys. I will say just as this morning Evette has referenced some material, most of the remarks that I've made today can also be attributed to an issue brief on urban Indian health that was published by the Kaiser Family Foundation. I think that there are very few of those out there. I believe that that is probably the most recent one that has just been published. So, yes, I do believe that additional surveys, process such as your describing is needed with definite input from the Indian community.
DR. MAYS: I want to follow-up then also on something that Suzanne Huertin-Roberts brought up this morning. What is your sense about willingness to be part of collaborative partners, or be involved in partnerships as a way to try and bring these research efforts together?
MS. RUSSELL: Well I think one thing that is very unique to the urban Indian health programs being very poorly funded, the urban Indian health programs would not have been able to survive on Indian health service alone, so have successfully forged partnerships with different agencies and state and local entities as well as private resources for funding, so I do believe that that model is there already and I think that urban programs would be open to forming more collaborative efforts, especially in the area of data collection.
DR. MAYS: Are there questions from others at the table?
MS. HEURTIN-ROBERTS: This morning we talked about some of the problems doing research in various tribal communities mostly in reservations. Having access, questions of IRB's, ethics, and so on, and the case of urban Indians where there's not a cohesive necessarily community, who is looking out for the rights of those people? Who is looking out for the rights of the urban Indians and who is going to protect them against research abuses and so on? Because you don't necessarily have the community or the tribal structure in place looking out for them, it's more individual people just in a city.
MS. RUSSELL: Well I think urban Indian health programs have a support system definitely with their own organization and board of directors as well as with the Urban Indian Health Program branch as well as with our organization, the National Council of Urban Indian Health, will be there to try and assist with any studies and research as comes about. There really haven't been too many so I don't know that that issue was really in the mainstream has come up only because there hav not been a lot of studies done on this specific population.
DR. MAYS: One of the things that came up this morning is that in the collection of data and focusing on research efforts that part of what we should do is look at what the communities priorities are. Can you talk a little bit about what you think some of the priority areas are in terms of urban American Indians?
MS. RUSSELL: Sure. They don't differ too much from the tribal communities. Again, facing diabetes is a definite priority, cancer, HIV AIDS is definitely, I think probably more so for the urban communities as being a population that travels between reservation and the urban and back again I think that HIV is definitely become a major concern for the urban Indian health programs, as well as I would have to say alcohol and substance abuse as well and mental health issues.
DR. MAYS: Are there questions from anyone else at the table? Yes?
DR. RHOADES: I just have a comment to Suzanne's question. I've done a little bit of research with the Seattle Indian Health Board, which is about as close to a cohesive groups as we could find at least in Seattle. In order to have access to a health board's patient population you have to have approval through the Seattle Indian Health Board. They have to approve the study and the Health Board is made up of Native individuals so in terms of research protection it probably, it falls to those kinds of urban Indian health boards. I guess that's a surrogate for a tribal council.
DR. NEWACHECK: I had one additional question about Medicaid in urban areas and Dr. Joe's report that the did for the National Academy of Sciences she pointed out some of the difficulties in urban areas of American Indians getting Medicaid coverage. Is that generally your experience too or what you hear from your urban centers, that Medicaid is difficult in terms of enrollment and such?
MS. RUSSELL: Yes, I think that right now we are currently working on better collaboration but also I think that as far as data goes I think that is definitely one of the problems we have in, at least one of the problems that the programs face in getting individuals eligible for Medicare and Medicaid services.
DR. BREEN: I was wondering what the relationship is or maybe coverage in terms of the organization that your Executive Director of and Evette's organization, the National Indian Health Board, does she focus on rural for example?
MS. RUSSELL: I'm sorry, can you repeat that?
DR. BREEN: I was wondering does her organization focus more on reservation Indians, more rural Indians?
MS. RUSSELL: Yes, the National Indian Health Board is comprised of more tribal governments and focuses more of the tribal area whereas the National Council of Urban Indian Health is comprised of urban Indian health programs and clinics across the country. But we have collaborated on specific issues in the past and do currently continue a dialogue to see how we can combine our efforts to better service the needs of the American Indian population.
DR. MAYS: Since I know you have to leave and you won't be able to be with us at the summary wrap-up, I just want to make sure if there are any additional recommendations, or recommendations that you have heard that you particularly want to make sure that we clearly hear that you kind of as your parting words, please share that with us so that can clearly hear that in terms of on behalf of the urban American Indian communities.
MS. RUSSELL: Sure. Again, I really want to say thank you especially to Edna Paisano who has been very instrumental in keeping us a part of the process but I also want to add that I think at this point, it's very important for the programs themselves to accurately collect data and I think to do that, again, I would have to say that there would need to be a specific increase in funding for Urban Indian Health Programs to collect and maintain the data themselves. I think that in order to do that, funding for staff, for training, for licenses, for all those issues would come into play and I think that's really important as the urban Indian population increases. I think one of the things that is so important to be aware of is that with the demand for services increasing, it's such a tap to the current staff of the Urban Indian Health Programs so I think that that is definitely a major road block to collecting data in a timely and reliable fashion as well.
I do want to add that if there are any other questions that I can not answer today I'd be more than happy to be able to do that and I do want to share our web-site information, which is www.ncuih.org which is a comprehensive web-site listing the different membership programs and a little bit of background on urban Indian health.
DR. MAYS: Great, if there are no more questions, I think we have to let her go so she can catch her plane. Thank you very much and I know you've been going from place to place and you squeezed us in so we greatly appreciate your taking the time and being here with us. Thank you very much.
MS. RUSSELL: Thank you.
Agenda Item: Transitions Report
DR. MAYS: At this point in time what we want to do is to turn to a discussion about a report that I think will be particularly salient as time goes on for the American Indian and Alaska Native community. And it does give us some recommendations, sense of direction, etc., for this report. For those of you who are here and actually have the materials or have the booklet, it's called Transitions 2000, a Five Year Initiative to Restructure Indian Health. Part of why we want to focus on that is because it really helps us to talk a bit about health disparity issues in terms of the things that appear in this report. Again, we are going to be calling on Evette to help us in leading us in a discussion about the Transitions Report. There are others also in the room who will also comment, such as Edna Paisano will also comment and Dr. Rhoades --.
DR. RHOADES: I was just asking for a moment I guess before we move on because people have been citing the references for earlier when I gave my talk, a lot of the information gave was in a couple of chapters that I co-wrote in the book, American Indian Health, Innovations in Heath Care Promotion and Policy. It's edited by a different Rhoades, Everett Rhoades, my father, I don't mean to be plugging anything, but it's a nice complement in terms of health care as opposed to the health policy book so I wanted to let people know that that was published in 2000 by John's Hopkins University Press, so if anybody wants to look up information that is a source for more medical oriented information. Sorry to interrupt the flow.
DR. MAYS: What I'll ask you to do is, and this is true for everyone particularly when you are citing a book just in case someone didn't get it down, is if you could e-mail tonight or tomorrow that information to Audrey, and Dr. Burwell you want to give them your e-mail address?
DR. BURWELL: It's alburwell@osophs.dhhs.gov.
DR. MAYS: Great, so then what we can do is we can put it up as part of the information so that the people on the internet who went I just lost my pen just ran out of ink, etc., they will be able to, we can actually have it on the web-site for them to be able to get that information.
Evette can I ask you to begin the process with a discussion about the Transitions 2000 and it's implications in terms of our ability to collect data on race and ethnicity for American Indian Alaska Natives in service of the elimination of or reduction of health disparities?
MS. FOX: Sure, thank you Dr. May. I have to say something about the process and I don't think it's been a necessary issue of just the National Committee on Vital and Health Statistics but probably because my board members have been trying to make time available to be a part of this hearing and couldn't, we weren't really clear on the agenda until this past Monday and it's partly due to travel that we've had and the agenda that we've always seen has just been a tentative and we didn't have necessarily an official letter of invitation, we communicated by e-mail so that's been fine but I didn't really understand that we were to speak to the issue of the Transitions Report until I saw it here say Transitions Report and I didn't understand what that was because in Indian Country we call it the Restructuring Initiatives Workgroup Report.
But I have comments about it because we made a presentation to the Department of Health and Human Services annual budget review team and I have just a small section of what we presented to the Department in May. This report was not yet final at that point in time so I'm going to tell you conceptually sort of what some of the issues are and I'll reference a part of what is here just for the purposes of people out there in internet land so they understand kind of what's included in that report but it is available on the web-site at the Indian Health Service and so it's just a difference in understanding the terminology. We had been working with Sally Smith to have her and the Alaska Native Health Board present you with tribal perspectives on health disparity issues because that seemed to be the topic and maybe it's just a limited understanding on equal sides but I hope we can give you the best overview we possibly can.
DR. MAYS: Well, we should say that you were doing yeoman's duty here in the sense that Sally had a family emergency, and you're right, Sally would have been doing a presentation so we should acknowledge to everyone that you have very kindly agreed and also attempted to bring your board into place to help with the two places, we actually had Sally in two places, so that's why.
MS. FOX: Thank you for your understanding and I do have the comments that were prepared for the Alaska Native Health Board so I don't want to trip from that but I do want to give you a sense of just what is included in this Transitions Report and it's probably one of the more recent pieces that have been published by the federal government about Indian health care.
It is not a final report, it is merely a draft of the recommendations from the Indian Health Service Restructuring Workgroup and the charge of that particular workgroup was to, and this is sort of before the new Administration came into being partially staffed, but the former director of Indian Health Service, Dr. Michael Trujillo, upon coming director of Indian Health Service had thought that it would be important to look at the design of the organization, that after 40 years, from 1954 that the Indian Health Service really needed to look once again at its structure. So they convened a group of tribal leadership and urban Indian leadership and Indian Health Service professionals to examine the Indian Health design for the entire Indian Health Care System and this was done back in 1994 and 1995.
In 2001 it was felt that it was important to look once again at the structure and not to visit it after 40 years but go back after five years and see how the system had changed and because of information technology, I imagine every health system in the country is constantly re-looking at its structures and how to do a better job.
In the first report the primary emphasis was that we should keep the patient first and you have to understand that all of that was happening at the advent of the National Health Care Reform Efforts, and since that time there's been many initiatives and state health care reform and implementation of managed care in America's health care systems and so, it just seemed timely to create what's called the Restructuring Workgroup. It includes membership from each of the 12 areas of the Indian Health Service, the tribes were able to elect who they wanted to serve in that capacity, it includes a representative from their National Council of Urban Indian Health, from the National Congress of American Indians, from the National Indian Health Board as well as the Tribal Self-Governance Advisory Committee. It was chaired by a tribal co-chair whose name was Joseph McKeeno(?) and an area director whose name, who works for the Indian Health Service, whose name is Dr. Kathleen Annette(?).
They have met over the past year about five or six times, they just sunsetted their activity in preparing a report and all of this sort of started making a lot of sense when suddenly the Office of Management and Budget and the Department of Health and Human Services under Secretary Thompson's leadership decided that it's important to implement President Bush's one department management initiatives to streamline and make government more effective. So because the tribes had already had the foresight before the President to look at how to do things more effectively, the Restructuring Workgroup was an appropriate entity to look at how to do some of these consolidations.
And it really wasn't absolutely clear until the President's Fiscal Year 2003 budget was presented where it became obvious that some of these new departmental initiatives did indeed speak to consolidating offices and moving certain programs into the department and possibly causing the loss of at least 100 full time employees and the loss of tens of millions of dollars to the Indian Health Service system. Tribes have been looking at ways to address new management recommendations of this new Administration.
So I'm going to present to you just a copy of the four primary bullets that were presented earlier and some of them are reinforced here and tell you a little bit about the progress and then I'll hopefully have a chance after maybe some Q & A to raise some of the Alaska Native concerns.
Management Initiatives in IHS Restructuring. The charge was to identify changes to the design of the Indian Health Care System and it was important to also address recommendations to be submitted by June 1, 2002. This is essentially the report that you have here in front of you. The initial effort was an 18 month process, an earlier process was presented by the Indian Health Design Team which kind of like led to the advent of the Restructuring Initiatives Workgroup. 40 recommendations were submitted to the Indian Health Service.
The challenge in restructuring is to determine how will operators of Indian Health Care continue to provide services in a changing environment. And as I noted earlier it's been six years since the initial stakeholder redesign has taken place.
What was noted most remarkably and a lot of this was founded on Dr. Jennie Joe's study, I think people really felt that it was important to look at the Institutes of Medicine's analysis of where disparities occur amongst American Indians and Alaska Natives and we have seen and have felt for many years, not only under the Bush Administration but the Clinton Administration that disparities among American Indians and Alaska Natives are the most dramatic in American society and they warrant new initiatives by and new resources from the United States government.
It was felt that we should look at the evaluation of internal redesign requirements of Indian Health Service and impact of the one HHS initiatives. A key concern is the limited consultation that has occurred between the Departments of Health and Human Services Secretary Tommy Thompson and the tribes because the one thing you need to really understand about Indian Country and this is clarified and reaffirmed in the Presidential Executive Order, that is entitled Consultation with Tribal Governments, and it requires that the federal government and its various agencies consult with tribes on the implementation of new policy or funding changes within the Indian Health systems.
The Executive Order really sort of recommends that consultation occur with each and every tribe and if you look to a workgroup like restructuring to be the answer to carrying out these one Department, one HHS initiatives, it really limits the capacity for the tribes because some are very large like the Navajo Nation, which is probably more than 250,000 American Indians and their land mass alone encompasses the entire state of West Virginia.
When you look at some of the smaller Alaska native villages that are in very remote locations, their population may be very small but their land is very large and I guess the idea is that each tribe and each entity is different in Indian Country and one thing might work in Navajo may not work in Minnesota.
So the idea is that you have to consult with each tribe like state governments, each tribe should have some opportunity to make comment. Right now there's feedback being sought of each tribe with respect to this report but the Department has never, up until this month, has actually asked each tribe what their opinion is about these new restructuring initiatives.
Recommendations in the study effort are that there should be memorandums of agreement to improve communications and coordination. I think earlier this morning we talked about what could we do to consolidate or coordinate our data collection activities better and it applies across the board but rather than seek out consolidation of the IHS public affairs and legislative affairs office, that was a specific budget recommendation.
There is a recommendation in this study effort against consolidation. There's a feeling at IHS health facilities and sanitation construction programs that there's a need for stronger programs and I think the budget proposal was to consolidate some of these programs partly due to the unique nature and mission of the agency and to the HHS and IHS human resources. One of the things besides public affairs and legislative affairs, there's a proposal in the President's budget request to consolidate the facilities construction as well as the personnel and human resources.
If you've run hospitals or clinics you know that it's important to have some control over who you hire but if you bring it to a national level and consolidate this particular program it will really serve to make problems occur we think in many of the local community grass roots locations where Indian Health and tribal health facilities operate.
There was also a recommendation that there should be some consolidation of certain elements of IHS information technology systems and I will, I have a staff person coming here shortly who will tell you more about the information technology recommendations of the Indian Health Service Information Systems Advisory Committee. They have a plan for addressing technological needs as far as data collection but the feeling is that if you integrate financial systems that might be appropriate, but you need to maintain separate operating systems.
The feeling for why at least at this point this Workgroup is opposing a lot of the consolidation and initiatives is because you're removing the budget authority from the agency and placing it with another and you don't have a lot of control when you lose those staffing. Between 1994 because of the first Indian Health Design Team effort, the Indian Health Service was downsized by 60 percent. Now the money and the resources didn't suddenly just disappear, they were transferred to the IHS field based programs and tribal programs. Most of this occurred because of the policy of self-determination and self-governance where the entire Indian Health Service budget was nationalized and parts of those funds were sort of, they looked at the 558 tribes at that time, how much shares did they have within the entire system, and tribes took those and had the legislative authority to take some of the administrative dollars out of area offices and headquarters and redirect them to the service unit level, the tribal level.
Under OMB's terminology, the idea is outsourcing, outsourcing and contracting, so a lot of the money and systems programs have moved from headquarters to the local field-based programs, so due to previous downsizing, we believe at this certain point in time that the Indian Health Service and Tribal Systems should be exempt from further downsizing and rather the agency should be doubled to support the five year vision of the Restructuring Workgroup. It should be funded to complete one billion in sanitation and health facilities construction.
There are also recommendations from the Restructuring Workgroup that added funding needs to go to IHS from other DHHS divisions. This is essentially due to the unique nature and mission of the agency. We have specific recommendations included in this report that were highlighted earlier that speak to the importance of increasing NIH's role, as well as the CDC's role in doing at least one and a half percent, the -- amount that Indian people would like to secure in additional research or other activities that they should be accountable to the Indian Health Service and to the tribes in terms of what their research initiatives ought to be for the future.
In summary, Secretary consultation with tribal governments is essentially on One DHHS initiatives. There need to be regional meetings or some kind of forum for the tribes now who have received the study to be able to talk collectively with the Secretary about these recommended changes, it's only consistent with the President's Executive Order. Indian Health Service has been downsized enough, when you transfer 60 percent of your headquarter resources to the local level, the feeling in Indian Country is that Indian Health Service is a model for other agencies in the government to look to for streamlining, to bring program funding to the local grassroots level and this year alone, when the Navajo Nation undertook some of its self-determination contracting, the number of FTE's that were diminished met the entire Department's allocation that had to be met this year, so the idea is that we're helping save the other parts of the agency from having to let go of full time equivalent staff and maybe it's time now for them to not look to us for any more reductions.
One DHHS consolidation plans must address the uniqueness of Indian Health Service because we are the largest direct provider within the whole of HHS, with about 15,000 federal employees and probably roughly 12-16,000 tribal FTE's, with almost a workforce of 30,000 out there working in Indian health care that we're totally unique from other agencies of the HHS and you can't just consolidate programs like human resources and expect somebody in Washington, DC, to be able to hire a clinician or a nurse or an EMT at a reservation site somewhere in the middle of Oregon. They won't understand how to recruit people. That's kind of the concept that tribes are trying to avoid.
The feeling is still that One DHHS concepts for Indian people hold promise if it means that we can get other federal agencies within the Department of Health and Human Services beginning to assume their responsibility for Indian health care. I guess the questions that have been raised by tribal leadership is when will Secretary Thompson plan to consult with the tribes and will HHS commit to reinvesting the savings from One DHHS plans to reduce disparities. I think earlier we laid out very clearly what those disparities are but if you look to page 38 or if you have this in front of you to page 58, it sort of lays out a couple of different ideas and visions that the Restructuring Workgroup recommends.
The sense is that Indian Health Service funding must be doubled on a per capita basis to bring resources for Indian people, Indian health in line with those available to other Americans.
That tribe and urban Indian organizations must be assured grant eligibility to access and share health care resources.
That the number of health care providers in the Indian Health Care System must be doubled. That shortages of doctors, dentists, pharmacists, nurses and other health care providers in Indian Country must be eliminated through better recruitment, training and compensation. And I know that's a problem across America, particularly in the nursing arena, but it's also something we have to see addressed in Indian health.
The feeling is that aged inadequate hospitals and ambulatory clinics must be replaced and modernized and space and equipment sufficiently expanded for a growing Indian population.
And that investments must be made in community infrastructure especially for safe water and waste disposal, forms of municipal infrastructure that are virtually nonexistent in remote areas of Indian Country.
So tribes have also spoken to the importance of traditional healing and they have some very good ideas and successful initiatives looking at both chronic and preventative illness as well as behavioral health and because we've been able to find ways with this extremely rationed health care system to still streamline and bring programs down to the local level the feeling is that the federal government can learn much from the Indian Health Service system and we can learn much from other systems and the idea is to promote partnership.
So that would essentially conclude my remarks about the Transition Plan. It is my understanding, the Senate, United States Senate and the Interior Appropriations Committee did adopt many of the recommendations in the report and they are not necessarily buying into the President's budget to streamline or to consolidate programs which is kind of good news for us but if there is a continuing resolution because the House and the Senate can't reach agreement on the spending bill we're kind of worried that OMB will move forward with some of these initiatives and strike and consolidate and streamline information technology and if they do that, they're going to have less data available even though there might be some new efficiencies it sort of spells disaster for Indian Country.
So we're hopeful that Secretary Thompson will adopt the primary recommendation that we need at least a year to consult about some of these options and we are regionalizing many programs but it's still a long way from getting tribal endorsement. When you have one representative representing maybe say 41 tribes as our board chair-person does from the Northwest, Julia Davis, she's not going to be able to go back to each of those 41 tribal governments and convince them that this Transitions Report should be adopted. She doesn't have the time or the money to do that. They do meet collectively on a quarterly basis but what we understand is that people are supposed to respond within 30 days and that really seems to be unreasonable, particularly in an election year.
So we have some concerns about implementation, Native people, they are participating and trying to figure out ways to maybe stave off the implementation until they have a greater chance to consult about these issues.
That's just our rendition of what's happening with the Transitions Report.
DR. MAYS: Great. Thank you. I'm going to see if we have any other comments on the report and then if not I'm actually going to raise, let us raise questions. Any other comments?
Can you talk a little bit about the notion of One Voice and the implications of that for example for us where we think more about the issue of collection of data and what have you. So having One Voice in terms of the overall community, can you talk about how the One Voice works for you relative to data collection and data issues?
MS. FOX: One Voice, I think the feeling is that, and this just goes back to the whole concept of tribal consultation, it's my sort of studied opinion that the Executive Order, it recognizes each tribal government and when that was originally construed, it was immediately following President Clinton's historic meeting with all tribal governments back in 1994.
It's not often that American Indians or Alaska Native people have entree to the White House, but he felt it was important to meet with the tribal chairman of each tribe and they came together and it was a very remarkable day. But the Office of Domestic Policy Council for the White House saw that it was critical that tribes have a chance to convey their particular issues to the President.
I think the feeling was that from the Office of Domestic Policy Council that there needed to be an Executive Order on how the Department, how the Administration, should go back to meet with tribes about any issue and they created a process for that.
The great part and the good news is the Department of Health and Human Services is probably the only agency who at this point in time out of 13 Cabinets actually conducted annual budget consultation now for approximately six years with Indian Health Service, the Indian health budget and then about four years on the Department's budget and so Secretary Shalaha and now Secretary Thompson have both taken the Executive Order seriously.
When President Bush came into office it was challenged by the National Governor's Association, because they said hey, wait a minute, we don't necessarily agree with this governance recognition of tribes at this level. Yet when the White House Council looked over that Executive Order, they went ahead and said this isn't really such a bad thing and it's not interfering with state government necessarily, we should implement this Executive Order.
So on June 19th, basically a Congressional inquiry that we had from the National Indian Health Board through Congressman Frank Pallone's office, the President reissues and reaffirmed through the White House Council this Executive Order. And so the idea of speaking with One Voice or attempting to address issues with One Voice is that on those common issues that tribal government's believe in, which in this case I think they believe strongly that it's important to address health disparities in this country now, we should be working together with a singular voice promoting that.
It's based on the idea of government to government consultations, that as tribal governments we each have an opinion, we're entitled to opinion but if we're going to speak together for the common issues that affect all of our people that we should be doing that with the President of the United States and the Secretary of the Departments and we see the Committee on Vital Health Statistics as a means for doing that but hopefully when you decide what strategic actions you will take to recommendations to the Secretary the tribes will probably want to see what it is that you are recommending and try to ensure that they are speaking with One Voice on the common issues that are developed.
I don't know if that really answers your question but we believe as governments that the country is obligated to talk to us on a government to government basis.
DR. NEWACHECK: In the beginning of your remarks you mentioned that you might be able to share with us some of the perspectives on Alaska Natives as well because we've heard primarily about American Indians today and it would be really helpful if we could hear a bit about that.
MS. FOX: Ok, and I must apologize, I don't have copies of these to share with you, they were sent to me by e-mail and I was able to get a copy to go off of, but I will make, I do have two copies, and I can make them available to you for distribution to the full panel.
What Sally Smith would have conveyed to you today, and she is very passionate about Alaska Native issues, she represents 228 Alaska Native villages and they cover a wide range of cultures and sovereign beliefs throughout the state of Alaska.
She would report to you that in the early 1970's approximately 80 Alaska Natives developed cancer each year. In 1998, 269 Alaska Native patients, of which were 116 men and 153 women, were newly diagnosed with invasive cancer. And I must say that the next set of data is almost purely focused on cancer because they have some very comprehensive cancer programs there and some significant needs but there's also data here about diabetes and some other issues.
Based on the data for the most recent five years, 1994 to 1998, the most commonly diagnosed invasive cancers among Alaska Native men and women combined were lung, colon/ rectum, breast, prostate, stomach, oral cavity and kidney. With one exception, the three leading cancers among men and women combined were lung, colon/rectum, breast and were the same in each of the eight major service units although the rank order varied. The one exception was Mt. Edgecomb where the third leading cause of prostate cancer just slightly exceeded lung cancer.
By gender the leading cancers among Alaska Native men were lung, colon/rectum, and prostate. For women the rank order was breast, colon/rectum, and lung. Again for the most part the same three cancers for all Alaska Natives were also the leading causes in each major service unit though occasionally varied in rank order. The exceptions included stomach cancer which ranked among the top three cancers in men in Barrow and Norton Sound service areas. And kidney cancer ranked third in the Yukon delta. It should be noted that small differences in the numbers of cancers can change the rank order.
The average annual age of death incidence rate for all cancers combined is ten percent higher among Alaska Natives than the U.S. white population. Rates for Alaska Native men were similar to the U.S. while rates for Alaska Native women were 20 percent higher.
Although the age adjusted incidence rates for all cancers is similar for Alaska Natives and U.S. white, rates for specific cancer sites differ. The rate for lung cancer in Alaska Natives exceeds the U.S. rate among both men and women by nearly two-fold. Rates among Alaska Natives are also higher for the U.S. for cancers for the oral cavity especially -- all sites in the digestive tract, and the kidney.
Breast cancer among Alaska Native women has increased and is now at least as high as that of U.S. white women. Prostate cancer continues to occur less than half as often in Alaska Native men than in U.S. whites. Rates among Alaska Natives are also higher than the U.S. whites for melanoma of the skin, uterus, lymphoma, Hodgkin's and non-Hodgkin's, and cancers of the urinary, bladder, and brain. Cervical cancer, once a leading cause of cancer in Alaska Native women, now occurs at a rate similar to that for U.S. white women.
This information can be found in a report called the Alaska Native Cancer Update, 1986 - 1988, created by the Alaska Native Health Boards, Alaska Native Epidemiology Center and the Alaska Native Medical Center. It provides details on occurrence of cancer by gender and age for all cancers combined and by specific cancer sites for all Alaska Natives and for eight major service delivery areas.
These data are also available on Alaska Native web-site which is www.anhb.org/sub/epi. Some of the cancer rates in 1994 combined to 1998, some of them indicate that they were all age adjusted so you can compare them directly for Alaska Natives. Some of these are for all sites and all cancers combined the Alaska Native rate was 425 per 100,000 compared to the U.S. white rate which was 395 per 100,000 which is an odds ratio of 1 to 1.
A lot of this is kind of like exactly what Dr. Jennie Joe suggested. It would be nice to do some comparison of just specific sub populations and I think a lot of this speaks to that. I don't know if it answers all of your thoughts or recommendations but what we know is that Alaska Native breast cancer rates were 66.6 per 100,000 compared to a U.S. white rate of 62.8 per 100,000, again a 1 to 1 odds ratio which is very comparable.
The vast difference in cancers in comparison to U.S. white for all major Alaska areas are those which are behavior oriented. For instance, Alaska Native lung cancer rate is 90 per 100,000 while U.S. white rats are 53.9, almost twice the odds ratio, 1 to 9. Alaska Native smokers is 43 percent of those sampled in the behavioral risk factor surveillance system. Non-Native smokers in Alaska are 23 percent while the U.S. rate in general is 25 percent.
Alaska Native oral cavity rate is 17.3 per 100,000 while U.S. white ratio is 95 per 100,000, which again is almost twice as high, 1 to 9 odds ratio. In the Alaska Native population, 15 percent of our men use smokeless tobacco and ten percent of our women. The non-Native Alaska men average seven percent while zero non-Native women use smokeless tobacco. I know that's the same for the United States American Indian population. We have a lot of women who do that.
Digestive cancer among Alaska Natives is also very high with a 141.6 per 100,000 rate compared to 69.6 per 100,000 for U.S. whites. Again, more than twice as high with an odds ratio of 2.1.
Liver cancer has a rate of 6.7 among Alaska Natives comparing to a 2.9 rate among U.S. white; this is a 2 to 6 odds ratio.
In the behavioral risk factors survey August 2002 report for Alaska Natives, analysis by the Alaska Native Health Boards Epidemiology Center for 1995 to 2000, Alaska Native women aged 50 years and older reported binge drinking significantly less often than younger Alaska Native women and men reported, which would be ages 50 years and older -- binge drinking significantly more often than women.
The prevalence of obesity was statistically significantly greater among Alaska Natives than non-Natives among both men and women with notably higher rates among Alaska Natives ages 18 to 34 and ages 35 to 49 especially in Anchorage and Fairbanks areas, both of which are urban areas with the rest of Alaska primarily being rural with high use of traditional subsistence foods.
Since the 1950's health status has improved among both Alaska Natives and non-Natives. But the most dramatic improvements have been among Alaska natives. Infectious disease are no longer a major cause of death among Alaska Natives. Life expectancy at birth has increased 22 years among Alaska Natives and ten years among non-Natives. Which is pretty significant. Infant mortality has decreased almost ten-fold among Alaska Natives and about four-fold among non-Natives.
The improvement of health status in Alaska during the past several decades occurred largely through the public health efforts of improved sanitation, treatment for tuberculosis and other infectious diseases and immunizations. Despite the improvements, health disparities still exist in Alaska. Differences in health status are found between rural and urban Alaskans, both poor and the more affluent, between males and females, and among racial and ethnic groups.
For instance, the Alaska infant mortality rate during the 1990's by 30 percent. A similar declined occurred nationally. Declines occurred both in the neo-natal mortality rate, that's deaths prior to the 28th day of life, and in the post neo-natal mortality rate, deaths from 28th days up to one year. The infant mortality rate among Alaska Natives declined by 36 percent but remains higher than the overall Alaska rate. Finally, the overall mortality rate fell in Alaska during the 1990's by 13 percent. Among Alaska Natives the rate fell by a similar proportion but remains substantially higher than the rates for all Alaskans and for the U.S. A similar decline occurred nationally.
I guess what I would say just in summation of these points raised by the Alaska Native Health Board by their staff and by their chair is that they are one of those areas that are fortunate to have an epidemiology center. They are one of the areas that I said earlier in today's testimony that actually has a cancer specialist on hand to help them. Unfortunately, they are not so close by that you could send a lot of American Indians to Alaska but with the Anchorage Medical Center, they've been doing some very amazing things in the area of cancer. I know that they've had some funding from the National Institutes for Environmental Health Sciences but I think strengthening the data set through their epi center can give you this kind of data and if only been able to really collect it probably in less than three years. But for three years of effort I think they've done a pretty amazing job.
We would just highly recommend that each area have access to something comparable to the Alaska Natives, but in general I think Alaska still has significant disparities, and those nice Alaska native people have a good relationship with Senator Ted Stevens and he really believes in information technology and data development. They have a little bit more time because they have more winter but I really look to them and his leadership for sponsoring some of the initiatives that are being recommended today. Thank you.
DR. NEWACHECK: Thanks for sharing that with us.
DR. MAYS: I want to ask a question, and I'm putting this out for everyone because I've actually been struck by it, and maybe you can share with us why, and then I'm going to ask, I'm going to put my colleagues on the spot and ask them, almost in all the presentations you've been able to talk about cancer and I wanted to get a sense of how that data gets collected for you or you collect it or why it is that you are able to provide the kind of information in that area. What barriers were broken down or what resources were given to you? And then I'm going to ask my colleagues, I happen to be fortunate to have two colleagues from the National Cancer Institute, I don't know if you know that, but there are actually two people from NCI sitting here, and I'd like to ask them what happened that they were able to get this kind of data? Because we've been out here searching for models but we may actually kind of have it in the room and if we do I'd like to know a little bit more about it. But I'm just struck that everyone of you could give us cancer data. I don't know if the cancer data is complete or not but you surely have quite a bit of information about it. Can you share with us why that is?
MS. FOX: I'll sort of try to lead in the discussion, I don't know if I have all the answers but, I think what's been important is that you have two maybe American Indians who are oncologists and I think about six who are in training. The National Cancer Institute has a cancer research network that I think is sort of breaking the tide but because of the Institute of Medicine study on the incidence of cancer I think that has helped to raise some awareness, but the ideas I think raised by the IOM study is that there's not enough money going out there. But in the case of Alaska I think the reason why they have such good cancer data is that I believe that the epidemiologist who is doing this work that's specialized in this area, and I don't know a lot of her credentials, but Dr. Anne Lanier is out there in the front tier doing a lot of this work. It really boils down to a few personalities and they have figured out how to break the tide in terms of getting funded. I don't know, it's probably because of the cancer registry data but I don't think there is enough SEER activity going on but it just seems that this data is fairly contemporary, it's not long-term.
DR. MAYS: Is there anyone else who wants to comment? Dr. Joe?
DR. JOE: This is relatively new I think in some respects because cancer is really the second leading cause of death for American Indians Alaska Natives and as I mentioned earlier when you go by the leading cause of death without looking at rates for Alaska, cancer has been the leading cause of death for both men and women for as far as I know the last 15 years. Some things that have contributed to the improved data set has of course they've expanded the SEER data collection across the country, the availability that NCI has made to fund tumor registry in Alaska and I mentioned the Cherokee Nation in Oklahoma. And then the CDC funded registries have all been at one way or another responsible for improving the data. But to large extent we have two reports on cancer in American Indians and Alaska Natives and this was Indian Health Service supported endeavor that really start trying to pull it together. But the data source primarily is mortality data. As I mentioned earlier, our incidence data leaves a lot to be desired. Our information on survival leaves a lot to be desire. It may look impressive but I think it's getting better but I don't think we're there yet.
DR. RHOADES: This is Dorrie Rhoades. What Jennie has to say I think is quite on and I think the force of the personalities in Alaska have helped push the data there, the New Mexico Tumor Registry was at one point the only one that had any kind of Indian data in it but these are not generalizable. But the National Cancer Institute has funded what is a very bold, and sometimes we don't like to use frontier word as Indians, certainly we don't like to use the word pioneers either but, this study is pretty unique in that they are funding six to ten centers of a cohort study in which they are going to be getting young adults and following them through longitudinally over time.
Specifically it was conceived to get cancer incidence data which we don't have and so people who are healthy now are going to be followed over time and it's a very big undertaking, Alaska is one of the sites that is going to participate in it, so I think the NCI should be, and I'm not sure who is collaborating with them also, I think it's a multi-institute effort, but it is extremely ambitious and hasn't been done before in Indian Country. I think they are hoping to get 20,000 and actually they are motoring about getting 40,000, and this is just unheard of in Indian Country for a cohort type study. I think that's something that most of us are going to be looking for results from very keenly.
DR. MAYS: Could the same efforts be done if it were say heart disease, HIV AIDS, is it cancer is a topic that people are more comfortable, we are also getting it as mortality data, or would there be other topics where we couldn't replicate this.
DR. RHOADES: I think it was conceived as a cancer, and it was conceived after the success of the Strong Heart Study, which was a three site involved 4500 adults and so people said well that has been successful, let us expand it into a cohort study for cancer and then people said well, you're getting young people, let's get this, this, this, this, this disease and I think the problem with that study is going to be we're all going to be wanting our little piece of it, which if we divide the multiple ways, they may not have good data on any one area. Part of the charge for that research group is to maybe keep a focus to start with and then build outward. They are going to look at cardiovascular disease as well in that cohort study.
But in terms of collecting risk factors there was a big discussion, I'm on the scientific advisory committee for that study, but there was a big discussion about should EKG's be added to the -- studies that they are going to be doing, it was initially diet, as a risk factor for cancer. Then people were what about this test, what about this test, what about this test, and it just can go really wide, but the potential is there. So, yes and no.
DR. MAYS: Would NHANES, would a specialized NHANES work?
DR. RHOADES: Administered to this cohort study?
DR. MAYS: No, administered to American Indian Alaska Natives. Could we do a specialized NHANES?
DR. RHOADES: That's just kind of a, well, the answer is yes and no, like everything. Theoretically you ought to be able to do one. In terms of practical implementation its proven to be very hard to do that for the same reasons that the Survey of American Indians and Alaska Natives when that was done collecting door-to-door information and personal interviews, they didn't to laboratory measurements like NHANES would. But kind of the thought after that was done was never again because it was such a problem for the data collection agencies. So in an ideal world, yes, absolutely it could be done. In a practical world, it's going to take a heck of a lot of commitment on many peoples parts.
DR. BREEN: I think that it does take an enormous amount of commitment because I've worked at NCI for about ten years and I think Jennie aren't you part of the Native American Cancer Network? And Brenda Edwards has headed the SEER program since I think 1975 or something like that and she's very committed to getting good racial ethnic statistics. If you look at the SEER data and the proportion of non-whites in that data set, it's huge compared to whites. And she's also, she was the one who pushed for the registry in Alaska and technical assistance and the Cherokee Nation registry and has also set up I believe annual meetings at least of the Native American Network, so I don't know, you know much more about this than I do, but she has been consistently committed to that.
She's asked Judith Swan, she has an assistant who works not quite full time but spends an enormous amount of time on the logistics behind the group in order to make sure that people are meeting and the technical assistance that's needed is available, that the funding is available. I suggested that -- for example from -- talk to her about some funding needs she had and they are going to help with that. They've been very responsive I think and so it does boil down to personalities and commitment to a large extent and there's really kind of no way around that.
MS. HUERTIN-ROBERTS: I agree completely with you Nancy, the only thing that I would add is that I think that NCI also has a commitment to population health sciences to an extent that some other institutes don't have. So we're willing and we put money into efforts to understand health in populations and see that as an important task.
MS. BREEN: And also I think increasingly recognizing that training is really important to make sure that the researchers from the communities where the data is being gathered are available to analyze the data so the analysis are strong, there's a continual back and forth between the data collectors, the analysts, so that there's a continual process of data improvement.
DR. MAYS: Ok, let me put a, there is a question from the internet, let me put the internet question out there so that it can be answered and then I know we have another presentation.
MS. FOX: Actually no, I just wanted to respond to the question that you asked. You were asking can we see, is there potential for getting data and other disease issues, I guess what I wanted to point out is that when the Balanced Budget Act in 1997 was passed there was $30 million dollars that was aside for five years, it was a $150 million dollar effort to create grant funding to the tribes for diabetes prevention and treatment. Dr. Trujillo selected what was called the Tribal Leader Diabetes Committee, an advisory group of tribal leaders from each area of the Indian Health Service to provide guidance to him as to how those monies should be dispersed and what they should be doing in terms of their data efforts and building advocacy for diabetes.
After three years that funding increased from $30 million to $100 million and now there are efforts to try to make that funding permanent for ten years at a level of $200 million. It was also something that was supported by the Juvenile Diabetes Foundation as well as the American Diabetes Association, so they have met quarterly and they meet even more often when the issue is pressing about funding allocations, but they've had meetings with the National Institute for Digestive Diseases and Diabetes and Kidney Disorders, NIDDK, and are trying to see that there's some kind of effort to build the data to enhance incidence and morbidity information.
I guess what I think I like most about that model is that as more and more tribes begin to understand all the challenges related to diabetes, including the needs for data, they've been successful in a period of five years to increasing what was limited money to at least $100 million dollars a year. I think that means so much in terms of prevention and treatment and now with some of the research efforts and prevention that were created as a consequences of that initiative. I think that a cancer network is important but I think what's problematic is that it's really narrowly construed within the Office of Minority Health, within the National Cancer Institute, and there probably needs to be other dimensions of NCI that bear responsibility for Indian Alaska Native research and I think if the network were funded to be able to meet at least four times a year you would see maybe a doubling if not tripling of the effort.
I know that there are other consumer advocacy groups that meet periodically but we've had discussions with the former director of the National Cancer Institute about maybe supporting and authorizing a tribal leader committee on cancer and because heart disease is so significant, diabetes and cancer, even if we started in those two other areas and heart disease which I think is even a more pressing killer, It would be interesting to see what we could do collectively. The funding for that little tribal leader advisory committee is very limiting. It's small in comparison to what the outcomes can mean. I just wanted to highlight that because we really need to get data in other dimensions.
DR. MAYS: Great, thank you. Let me put the question out and then what we'll do is if we could get an answer to it then we'll move on to our last presenter. The Restructuring Initiative Workgroup should be applauded for developing population specific special emphasis disparities that focus on the disease conditions that affect American Indians Alaska the most. Can you share with us what thinking went into identifying life expectancy as a special interest disparity?
MS. FOX: I couldn't hear your question.
DR. MAYS: I'm sorry. The Restructuring Initiative Workgroup should be applauded for developing population specific special emphasis disparities that focus on the disease conditions that affect American Indians Alaska the most. Can you share with us what thinking went into identifying life expectancy as a special interest disparity?
Anyone can answer that.
MS. FOX: That's almost too technical for me to answer.
DR. JOE: I don't know if I could do it this hour of the day. I don't know if, I think it sort of seems to me that when people talk in proving life expectancy it's really a typical concern, it's nothing, that's what you really strive for, because that is one good indicator that people are getting health care, whatever prevention that needs to happen happens. So I would of course, the statistics that we have from Indian Health Service in comparing the life expectancy of American Indians Alaska Natives with the general population all races indicate that there is a great need to do this. I think we had someone from the audience that talked about life expectancy for a woman who life on Pine Ridge Reservation is 58, somewhere in that neighborhood, and I think that's true. In some communities life expectancy is tremendously lower than the general population.
Unfortunately when you start doing one statistical measurement for everybody those kinds of things get lost. But the kinds of things that we look for progress is really one of those factors and I don't know that anybody ever thought about not including it, I think it just sort of came natural.
DR. MAYS: Ok, let us turn to our last presenter, who is Jim Roberts, and again we have to say this is yeoman's work, and we have to thank him, we're very lucky to be in Denver so that by being in Denver we're actually in the home of the National Indian Health Board so Ms. Fox was able to call upon her staff to come and spend some time in talking with us. As I understand it, Jim is actually going to address some of the tribal self-governance issues, is that the more technical issues?
Agenda Item: Tribal Self-Governance - Mr. Roberts
MR. ROBERTS: As you are all aware my name is Jim Roberts. I work with the National Indian Health Board and one of my responsibilities at NIHB is to sit on a workgroup with the Indian Health Service called the Information Systems Advisory Committee.
About two and a half, three years ago, Dr. Trujillo saw information systems as being so important to the agency that he assembled or mandated that this workgroup be organized to look at the information systems within the Indian Health Service, recognizing the fact that a lot of money or a lot of programs were being contracted or compacted by tribes in the course of tribes assuming the management of it's own health operations. A lot of the data quality and a lot of the data collection systems were also being compromised as tribes began to take over the management of it's own health care systems.
There is a system within the IHS that we rely on primarily to collect and gather information, data, and it's called the RPMS system, the Resource Patient Management System record, or software system. Within that system there are a number of different packages, pharmaceutical, billing package, schedule package, a number of different features that allow a facility to track its data. And as tribes have taken over the management of their own operations, because of the at the time probably three to five years ago the antiquity of the RPMS system, a lot of tribes were migrating away to computer off the shelf systems, what we call COTS. The dilemma that posed for us is that as we went forth during budget formulation to the Department or during the IHS budget formulation process, we're losing our ability to aggregate data as tribes take over and move to these off the shelf systems because a lot of the data is not making its way back in to be aggregated for us to make a case for the increase in the budget dollars that we request on a yearly basis.
So it's from that standpoint that I kind of want to address the group. I briefly looked over your agenda, I don't know that the information I will present will deal too much with the misclassification or miscoding issues that perhaps you all have been talking about. Having not been here this morning I'll try to put this in the context of what you're all doing here as best I can.
There are so little dollars within the Indian Health System right now that we're not caught up in the issues of data quality, of looking at misclassification or miscoding issues. We're caught up in terms of the tribal health facilities in looking at issues. We're more concerned in how to use dollars for the basic day-to-day issues. You'll see that there's a ranking here to the left and the information systems advisory committee for IHS, these are the different areas that we've ranked to be of highest importance to us. And they are more related not to misclassification or miscoding issues or the integrity of data, although you'll see data quality down there at number 11, they are more related on providing the facilities with the necessary dollars and the computer, or the IT infrastructure, so they can handle the day-to-day things, like billing, technical support, high speed connectivity, staffing, developing a graphical user interface for the RPMS system, those types of things.
You'll notice that the Information Systems Advisory Committee has ranked where we want to prioritize and spend dollars within the IHS. And those areas include the billing interoperativeability, what we're talking about there are user interfaces between some of the off the shelf systems and the RPMS system so that we can begin to aggregate data, get it into a centralized system so that when we go making our presentations to IHS or on behalf of IHS during the budget formulation process we have aggregated data that we can make a case for a lot of the increases that we're asking for.
I'm going to be, I wasn't really be prepared to present today, so I'm going to use a number of different Power Point presentations to kind of make the case and give you a sense of how IHS is spending it's data dollars.
What this graph shows is it shows the constituent group ranking are the actual people in the field. This is where they rank things they believe IHS should be spending their dollars in relation to information systems. The ISAC(?) rankings, those are primarily IT people that come from within the system and this is where they believe we should be channeling our efforts. As you can see, billing, a lot of the people out in the field believe we should be spending money on technical support, training, billing, staffing, interoperativeability, writing the interfaces related to working with RPMS systems and the off the shelf systems, high speed connectivity, computer patient records, data quality you can see is down there. As well if you look at the ISAC ranking, data quality is number 11. Depending on which group you look at it's not as high on the list.
The investment plan for the information systems within IHS are to invest in those systems that allow us to improve patient care and third party collections. You'll notice data quality is down there last. We have so little resources within the ITU that most of our efforts are being channeled just to provide the IT support for people to do their work on a day-to-day basis.
Third party collections. The rationale there is if we can improve our third party collections, we can begin to gather more dollars in order to expand services to our people.
This is a breakdown on some of the systems or the data, the day-to-day things, business systems upgrade, NPIRS system, a system that allows us to aggregate data. Training, IT leadership, telecom infrastructure, with the advent of the internet a lot of things moving to web-based systems, management, a lot of our clinics and hospitals are still dialing up with 56K to download information to the area offices so that it can make its way into NPIRS and then be aggregated.
Some effort in the government computer based record system. Security is a big issue. A lot of money is going into security, developing the systems firewalls at the area level, at the headquarters level and also at the field level.
ISAC priorities, I think I already mentioned this, revenue generation, connectivity to COTS, computer off the shelf systems, training and staffing, data quality is down there last.
So I think as you can see here a lot of the priorities related to information systems within the IHS are not going into data quality or even to begin to address the misclassification or miscoding and some of those issues.
The return on investment here, the rationale is that if we can prioritize some of these things that the ROI here would be increased collections or do others things. Cost avoidance, if we can, you would think data quality would be a cost avoidance issue if you could get the data right in the first place you wouldn't have to go back and make those revisions or corrections to whatever was into the system. Those types of things.
Data quality within the IHS. It is an issue and as you can see from the past slides that I have presented, it's not as big an issue as just funding the IT infrastructure, equipment and software and those types of things. It's way down there, but we are addressing it. The quality of data affects everything we do and as you can see patient care, third party revenue, GIPRA, Congressional reporting requirements that have come down on us in the last five to ten years, accreditation issues, planning, resource distribution, these are just three of the areas that we've within the ISAC are beginning to make recommendations on how to improve the data quality within our systems. At the National Data Center or the NPIRS there's a process at the area office and of course at the health facility.
These slides I think kind of just speak for themselves, if there were recommendations that were to come from the ISAC in terms of ways to improve data quality it would be the establishment of a National Data Center at NPIRS, establishing a form data processing procedures for all of our area offices, training and clinical and data entry personnel. If you remember, number three on that list that I showed you of ISAC priorities was training and personnel development. Development and implement assessment intervention tools, software, methods, best practices.
So I think as you can see within the IHS we have so little resources that most of our efforts are being channeled into just providing the necessities of hardware and software and then training. Then from a return on investment, it makes more sense to us to invest on third party collections rather than address the data quality issues because if we can receive money through the use of third party reimbursements, we can put that into investing into other efforts, hopefully maybe even to improve data quality.
Are there any questions?
DR. MAYS: Actually I'd like to make a comment and that is your presentation is a little bit more relevant than I think you're thinking it is, for two reasons. I have to smile because we've just come back from having one of our yearly meetings and at that point we were talking about things that overlap in terms of our own subcommittee structure, we actually have a subcommittee that is the National Health Information Infrastructure Committee, so they've been looking at these issues and there is a relationship between health disparities and health information. So if you saw us doing notes back and forth doing your presentation if was we were making sure the information is going to get exactly where it needs to go in terms of those who focus on it.
But I think it will be important for us in health disparities to make our linkage because as you kept emphasizing to us, data quality is down low and you have reasons why data quality is down low, because you're just trying to get the data in and get the infrastructure that you need in order to be able to get the data. We're sitting here, researchers and what have you saying we want this and we want it in this way, we need it in terms of standardized measures, etc., and I think you've brought us back to the ground to make a little bit more about what some of the connections are as to what some of those health disparities are in terms of part of why we don't have the quality of data that we need has nothing to do with just the issue of mistrust, distrust and negotiations, it also has to do with funding the necessary infrastructure. And in funding that infrastructure understanding how it may be similar or different.
So I really want to thank you for your presentation because it's very useful for us in the sense of making the connections that we as a national committee need to make.
MR. ROBERTS: That's one of the concerns that we have with the Information Systems Advisory Committee within IHS. If we had the necessary data systems, the disparities might be even more alarming because we could then begin to substantiate them.
DR. MAYS: I want to ask another question before I open it to some other questions, and that is I'm going to venture out into another group that I'm going to ask about since we're on a roll here. And that is, as you deliver care do you see the kind of code sets that are necessary for you to be able to do the billing for the ways in which you deliver service? Earlier I think some of the things about traditional healing and so I'm just wondering in terms of your ability to be able to capture what is really done in the settings, whether or not you feel that the kinds of codes that are available to you really are adequate.
MR. ROBERTS: Is that a question you're directing at me?
DR. MAYS: Yes.
MR. ROBERTS: I don't know if I'd be in a position to answer that question, I think that would probably be better posed to a clinician or one of the physicians that have actually worked in the facility that have used the software. I'm more on the hardware/software side of things. I don't get wrapped up into the software features of the systems that they all use in the facilities.
DR. RHOADES: I don't work within IHS, well I did for a little bit, and the billing and the coding and filling out the RPMS, the last thing on my mind was data quality and that. So in terms of collecting billing, I was just up in Alaska with the Association of American Indian Physicians meeting and talking to those folks who were really making a concerted effort to increase third party billings and they have two data systems that they are trying to work with, the RPMS and then also a billing system and they are just pulling their hair out to get the basic day-to-day billing things filled out. So the reliance on some of these administrative data sets while theoretically sounds good, in terms of practical implementation it's a real frustration for the people on the front lines.
DR. MAYS: Great, thank you. Any questions from my colleagues around the table?
MR. ROBERTS: If I might just make a comment related to your question you just asked. A lot of times what happened in our Indian Health facilities is that some facilities are running two, three different software applications to capture the necessary information that you are talking about. They might run the RPMS software feature for the client intake and registration and scheduling process, however for pharmaceuticals package or something they might be running a different software system like HealthPro or another one that's out there. For third party reimbursement they could even be using yet another software. The biggest challenge to us within the system right now are developing interfaces so that we can get this data to take back to the different software features that are being utilized and a way for us to capture that data back into the NPIRS system so that we can begin to aggregate it and justify our budget requests and some of the very things that we're talking about here today.
DR. MAYS: Any questions or comments from those in the audience?
MS. PAISANO: I just want to add a comment. This is Edna Paisano. We also work with the NPIRS data because our office, the Division of Statistics, really produces trends and regional differences. Again, with our work with the data and the efforts of the ISAC we, especially the tribal governments who are using off the shelf, it has been difficult to get their data into the RPMS system and into the NPRIS and with the work of the IT people in the main data repository, they have been working really hard and I think we're getting more successful but there's always that challenge. I think with looking at the patient care data that comes into the system, it has been improving over the last few years I have been working with Indian Health Service. But again, as the gentleman pointed out, it comes back to resources, not only money for the systems but also for staff.
MS. FOX: You asked a question that I think speaks to a different issue of cultural competence -- sort of like a coding for traditional medicine approaches. That is a subject and maybe Dr. Joe can elaborate on it a little bit more but there has been sort of one federal meeting of recent time in I think Arizona. There was discussion about traditional healing practices and should they be federally funded. It's really a matter for each individual Indian and particularly their families.
I know there's somebody who printed a t-shirt that says I'm a Sovereign Indian, which kind of sounds kind of neat but that means they are tribal and they believe in their sovereignty and yet their sovereign as a person and responsible as a person but because of so much research in the past and probably efforts in South America elsewhere, right now there is a real effort to protect the intellectual property of Native people, and yet even in an everyday tribal setting, you don't have a lot of Indian people who will go to an IHS doctor or even a tribally funded doctor or nurse to talk about traditional healing. They'll see that as an alternative approach and oftentimes they don't share that information with their clinician because sometimes in the past it's been laughed off. So I don't think that we're at the point where you'll see traditional healing practices incorporated into a patient classification system or diagnostic system. I know it would be really cool if there was a DSM 4 or 5 that was Indian specific but I don't know if in the behavioral arena if they've even reached that point for classifying behavioral health disorders. It's still something that is viewed as sacred and I think that's the reason there are Indians who feel sovereign is that they're not going to necessarily share that information either with the general public. There is an important need for cultural competent patient classification.
MS. BURWELL: Dorrie, just before you do that, I'd like to make a very brief comment that there's going to be a meeting on traditional healing coming up very soon in Baltimore. I don't have the specifics with me but we're going to post it on the Office of Minority Health Resource Center's web-site and that's www.omhrc.gov and you can get more information about that meeting.
DR. MAYS: Dr. Rhoades, Dr. Joe.
DR. RHOADES: In terms of reimbursement for traditional healing practices there have been small, I don't know if demonstration projects is the right term for it that there have been some reimbursements made for, for example, substance abuse counseling, detox centers, in terms of supporting some traditional healers who may conduct certain ceremonies. The Centers for Medicaid and Medicare are going to actually be looking into alternative medicine and looking for sites for demonstration projects in terms of, I'm assuming, in some day reimbursing alternative medicine and that's coming down the pike. Maybe Dr. Joe has some more specific examples to share as well.
DR. JOE: Let me just say a couple things. Some of the tribal communities that have quite a large number of people employed have negotiated to include as part of their insurance coverage payment for services of traditional healers. There's also been a provision in the Rehabilitation Act that allows for rehabilitation clients, Native American rehabilitation clients, to request and can get some additional money and support to pay for traditional healing, so there's been some precedence. The conference that we had in Scottsdale a little bit over a year ago approached this issue with the discussion with CMS and with the state institution and there's considerable controversy I think on one hand.
A lot of the traditional healers feel like there's going to be an additional burden on them to get certified, to get on the registry, the building system is daunting, so many of them say leave us alone. Let the patient take the responsibility if the don't have enough resources, financial resources that they could apply for some assistance to pay for some portion of the ceremonial activities.
So that's basically where the discussion has been in way of getting some help for patients that don't have resources. It doesn't really get into the notion of the ins and outs about specific traditional healing or methods. So that was really what the discussion was but I think the other is that Indian Health Service for a long time has had in their mental health program consultants or person who work in their program who are traditional healers who work with clients.
The difficulty I see is that we've not given them enough support to really help them document the kinds of service they deliver without infringing on intellectual property rights, those kinds of things. There's got to be some sort of -- measurements, maybe from the standpoint of patients, even if they're saying I feel much better, these kinds of things don't bother me as much anymore, or I was able to come to terms with some other problem that I may have had. So I tend to sort of think about it in that arena more so than sort of infringing on the issue of something that really is specific to a tribe and to maybe a way of practice.
DR. MAYS: Is it that your recommending that we need to have such either evaluation or demonstration projects in that area?
DR. JOE: No, I think what we were doing was starting a dialogue and I don't have a recommendation at this point. The conference that we hosted was to start a dialogue with large institutions like CMS on some of these issues. Because we see in many cases the cost of doing a lot of the traditional ceremonies is becoming very expensive and some families don't have any resources, so we were saying we'd got to look at this as one way. The Navajo tribe in particular was the beginning of this discussion. They were wanting to take over the CMS activities because they have to deal with three states. They said we want to take over that, contract that and do it for our particular reservation, but we also want coverage to include traditional healing. That's sort of the history of how we got to the Scottsdale conference. I don't know that we have enough information to make specific recommendation. The only think I've been saying is to acknowledge that we need to figure out a way to talk about that as being part of our health delivery system.
DR. MAYS: Thank you. Patricia?
MS. WHITE CLOUD: Good afternoon. I just want to make a couple comments on this topic because I want to maybe make it more real for you. I know a lot of times we hear about traditional healing and maybe it's not really real so I'll just tell you a couple stories. I had my son in 1969, I told you that story. But I had another son 12 years later and he was born in 1981 and before he was two years old he had, he used to get a lot of ear infections as a lot of people know that a lot of Indian children do. He had a broken eardrum so I went to IHS, I was living on Pine Ridge, up until a year and a half ago that's where I lived, and I was served by IHS. So I took him to IHS in Rapid City and there was a pediatrician there from Japan, I mean he was Japanese, and we could barely understand each other but he told me that my son had a broken ear drum and that was very serious and he gave him medication. I went home and I took him to traditional ceremony. He said take this medicine and come back in ten days. So I went home and I went to a traditional ceremony with my son and I knew my son was healed but continued with the medicine with him and I went back to the pediatrician at IHS in Rapid City ten days later and he said I can't believe it, your son doesn't even have scar tissue. He said what did you do? And I said, nothing, I didn't do nothing. And I'm not a clinician, I know nothing about broken eardrums. He said broken eardrums leave scar tissue and your son has no scar tissue. I said I guess he just doesn't. Like Evette was saying, it's very sacred, you just don't talk about it and I wasn't going to try to explain to this man that I could barely, we could barely understand each other what happened, and I wouldn't have done it even if he could have understood me.
When the same son was eight years, and I'm not going to go into detail about this one, but I just want you to know how real it is because this is just too sacred for me to talk about, but he was diagnosed with Leukemia and it took a long time, I'm not a clinician so I don't know why, many tests at the Pine Ridge IHS in order for him to get this diagnosis, but he finally did and they referred him to Denver Children's here in Denver. I brought him here, but before I brought him here, we were to leave on a Tuesday, his appointment was on a Thursday and I drove him here, and we went through ceremony on a Monday and I knew that when we came to Denver that he would not have Leukemia and he did not. He is now 20 years old. I just want you to know that it's real and that's why I wanted to share that with you. Thank you.
DR. MAYS: Thank you very much. What we need to is, we do need to wrap up because I know some of the people sitting around this table are going to be catching planes soon, but we do have just one more thing that if we could spend about ten minutes on before we do our wrap-up I think it would be great. You have in your packet of information a report that we received called Disparities in Hospital Rates of American Indians in Rural California. Just because I'm a California person, this was actually sent in to us, I didn't go solicit this, this was sent to us. Again, Ms. Fox has agreed to kind of walk us through some of the highlights of this particularly report. It's very seldom do we actually get information about disparities in hospital rates in rural areas so we also thought it was important to share just a bit of this with you before we bring this to a close so we also have it in the record. Ms. Fox? I tell you, what would we have done? It's so nice to come to your city.
MS. FOX: Thank you so very Dr. Mays. The National Indian Health Board has been the recipient of two different grants from the California Endowment mostly to advance advocacy and to provide training and technical assistance for Indians nationally but principally in California. Right now we have a grant project to try to accomplish this goal of increasing the Indian Health Service budget by a billion dollars and we accredit a lot of the reason for our successful receipt of these small grants, discretionary grants, is because of Jim Crouch who is a Cherokee Native, he's the executive director of the California Rural Indian Health Board and he's a good --, and he has been with CRIHB for quite a few years and it was wonderful that the California Endowment recognized him for his contributions to the improvement of health care particularly for American Indians.
So he is a part of this study. I'm not familiar with it up until today. I know that he has a number of study efforts that are underway working with both the Endowment and then with the Kaiser, not Kaiser, but the Kellogg Foundation. One of their projects they have at CRIHS is probably going to be a model for managed care for all of Indian Country on issues related to Medicaid and Medicare improvements in financing but this particular study was one that was issued nearly a year ago, it's called Disparities in Hospital Rates of American Indians in Rural California.
He's not the only author, the principle author was Dr. Carol -- and Ms. Sara Ellers, and what they did they looked at hospitalization rates and they tried to strike out and look at disparities in hospitalizations and avoidable hospitalization rates. Now in California just as a background, California is probably in terms of history, time and the law, was one of those areas where it's believed to be about 110 tribes reside in California only of which probably more than 40 I think but less than 50 of the tribes have federal recognition today. California was during the treaty making era of the United States history of policy making with tribes, California kind of like because they are the furthest west and because they had gold and gold rush resources, the stories about ISHI are very true where tribes were radically decimated by frontiersmen who were out as miners trying to take over Indian lands. You do have situations where there'd be one or two Indians or just a family out of a whole Indian community who survived in the gold rush era.
In terms of the federal treatment of California Natives there are many who do not have full federal recognition and many of those Natives have worked to survive and some of them are doing well and we're pleased that some of those tribes in Southern California who were very displaced are doing so well with their gaming activities. But CRIHB is based in Northern California and they represent the interests of about 32 tribes and CRIHB works with them collectively in a consortium basis to help provide health care and has for quite a few years.
One of the problems they have is there are no hospitals, absolutely no hospitals that are Indian run or Indian controlled by the Indian Health Service nor by the tribes in that community. And California is very large as you know in land base but they've been fortunate to have the California Endowment to support this study effort to look at hospitalization rates and avoidable hospitalization rates of rural California Indians instead of mortality rates.
Maybe this gets at some of the questions that were asked earlier on the internet but what they suggest is that you do any issues of racial misclassification by using files of IHS contract service users in the rural tribal Indian health programs in the federal fiscal year of 1996. They looked at those files that had been linked with state files and hospital discharges for that period. What they were hoping to do was determine disparities and they compared the hospitalization, avoidable hospitalization rates with these rural California Indians with those of various state and national reference populations.
The population based rates were being compared are adjusted for differences in ages of the American Indian and the reference populations for the linkage of files. Like the death disparity use in IHS resource allocation methodology the hospitalization disparities reported at this time are descriptive in statistical tests of the significance of the disparities and they felt that that was partly beyond the scope of the report.
I guess I just want to highlight a few points that hospitalization rates among rural California Indians in 1996 were higher than those of the national rates for American Indians reported by the IHS than there is for the United States population as a whole. The age adjusted rates were 30 percent higher, 127 hospitalizations per 1000 people when compared to the California population as a whole, which is 98 hospitalizations per 1000.
Hospitalization rates of the rural California Indians were higher than those of the white non-Hispanics, white-Hispanics, Asian Americans or Native Americans and comparable to those of African Americans in the state when age adjusted.
There were substantial racial misclassification at the hospitalizations of California American Indians state hospital discharge databases.
The hospitalization rates of the rural California Indians were identified through linkage with IHS records and what was noted was that they were 2.7 times higher than those of the people classified as being Native Americans on the hospital discharge records. Native American hospitalization rates were actually lower than those of all other major racial groups in California. What they found was that this indicates that many American Indians are misclassified as members of other racial groups on hospital records in California. This also implies that using hospitalization rates for Native Americans as a health disparity indicator for the American Indian population without linkage to IHS records for proper identification of officially recognized American Indians can lead to gross underestimates of the disparities in health of American Indians in California.
As you can see in some of the charts in the back, by diagnoses the five largest disparities in hospitalization rates for rural California Indians under age 65 compared to the same age group of Californian's as a whole are for males: injuries, which was a difference of 20 hospitalizations per 10,000 people, respiratory diseases and conditions, which was 13, skin diseases at 11, alcohol dependence at 8, and diabetes at 7. For females there are digestive diseases at 21, genitourinary at 20, respiratory diseases at 16, mental disorders at 13 and pregnancy complications at 12.
There is additional information with respect to Indian elders age 65 or over, the disparities in rates by main diagnosis are much larger and again, the charts indicate much of this information.
As far as avoidable hospitalizations when diagnoses are restricted to 12 conditions that expert panels have defined as avoidable hospitalizations with access and use of effective ambulatory care, the adjusted rates among rural California Indians were 129 per 10,000 are 30 percent higher than those for other Californians at 99 per 10,000 people.
Avoidable hospitalization rates for the rural California Indians are higher than those of white, non-white, white Hispanics, Asian Americans or Native Americans and comparable to those of African Americans in this state.
Again, rates for rural California Indians are much higher than are reported for people classified as Native Americans on the state hospital discharge database which is at 3 times higher among men and 2.6 higher among women.
Finally, the conclusions that they spelled out and much of what I'm reading from is the Executive Summary, is that this report provides evidence that officially recognized California area Indians eligible for rural contract services of Indian Health Service have higher levels of hospital health care needs than other California groups and that those needs are likely to be addressed with better access and use of effective ambulatory medical care. Reporting hospital rates for Native Americans failed to identify large numbers of hospitalizations of American Indians and California and therefore underestimates their health care needs substantially.
Though these disparities in some hospitalizations rates are small or based on small numbers it should be interpreted with caution until statistical analysis are completed. The presence of disparities over a wide range of ages for men and women is supportive of the general conclusion that additional health resources, especially resources that improve the availability, use, and quality of ambulatory care are needed in a rural contract health service delivery area of the Indian Health Service in California.
I think what I know about California is that it's a perfect example of how history, time and the law have affected the availability of appropriations and what's been interesting about the California Natives, under the policy for self-determination, is that they've really exercised their legal rights to go out and challenge the Indian Health Service about the availability of resources and they were able to demonstrate in the, I think it was the District Court level before you get to the Supreme Court in the Rincon Case, that I believe and I might be wrong it's been some time, but they simply do not have equitable resources to address their needs and they have done some really cross- cutting research in areas of tobacco control and they've done a lot in the area of managed care but they're still doing the best that they can to highlight some of the disparities that the California Natives experience and I think it's fortunate that the California Endowment has support for those efforts but I know that they certainly would appreciate the additional resource support of federal agencies outside of Indian Health Service taking the onus of responsibility for their population.
California I think according to the statistics is now the largest populated state in terms of the presence of American Indians and Alaska Natives, they certainly of course their further attention and I think since there are a number of Californians in the room you have a very good place to start some new research initiatives in the immediate future. Thank you.
DRS. RHOADS: Just a comment about this study. This is one of the examples of where the state and the CRIHB cooperated to get this data and it was also in the states interest because the IHS reports hospitalization rates and California had the lowest hospitalization rates but people in California said you've got to be kidding, I'm sending patients to the hospital every day. There's got to be more than this getting reported. The numbers that got reflected in IHS were the contract dollars, the hospitalizations that IHS partially paid for. There were a lot of hospitalizations therefore that IHS did not pay for. Who paid for those? The state, because most of these people are probably considered indigent so the two cooperated to come up with this study. That's the way a lot of communities have corrected misclassification and corrected some of the disparities is by partnering their data sets with somebody else's data sets and linking them together so that you can get better information that way and this is very key in terms of resource allocations, it's very key, and they'll be more studies coming out from it. I know Carol, we've talked, and she's looking at payer sources and all kinds of things so it's a very interesting study.
DR. MAYS: I think in general the state of California has been quite interested for lots of reasons, some selfish, some not so selfish. So even though I live there, let's give everybody their just due and undue at the same time.
I think you hit upon one of the things that in wrapping this up that I think is real critical and that is partnerships. And sometimes these partnerships come out of passion in which people are dedicated and committed and other times they come out of a sense of efficiency of funds, and trying to really determine whether or not cost can in some ways be allocated differently. But I think the issue is you can see the good that comes out of some of this.
The other issue that I think has come up throughout the day, the other theme, is people determining their own destiny in those partnerships. So it just isn't like people just partner and they are cooperative partners, I always loved that, when people talk about partnerships and whose cooperative and then I always know something is wrong, when you have to kind of put that word in there because they are not really equal partners but cooperative partnerships.
I think that that has been a theme that I would say the Committee has heard quite strongly about partnerships is that in that partnership it is the ability to be the ones asking the questions and having a sense of the direction, you're still working with others but the ability to kind of know the question and be the experts as I would say in partnership with others and their expertise may lie in a different area. I think in the area of health disparities what we're clearly hearing is a number of things. Number one, and I think as I read my packet and again, I live in California so I feel a little bias in the sense that we actually do a lot of this work and focus on these communities and what have you so I did have some background, but reading the packet just really drove it home in the sense of the extent of the disparity. And that with the extent of the disparity the question I think looms even larger as to whether or not there is the type of data collection that will both allow those interested in health disparities to determine the extent of the disparity and also to know how to move ahead and not just have the data but be able to do interventions and preventions that will allow the reduction and elimination.
I think today there have been a number of presentations that have helped us enormously to understand the complexity of being able to move to that point. I don't know from what we've been hearing so far how far beyond we are of just the collection of incidence and prevalence. I've heard that there are some best practices, I've heard that there are some great partnerships, but I think it would probably be useful also to get a sense of where this community is in intervention and prevention. Kind of having both the foundation, the partnerships and the science to be able to move I think as rapidly as some of the communities will move in terms of intervention and prevention. Some of that comes from, not fault, but some of that comes from resources, some of that comes from diversity, some of that comes from I think not having as many identified advocates in certain places to make this happen. So as I said our role is not that of advocates but as facilitators of change in terms of hoping that what we can pull together will find it's way to places.
Something I want the group to understand because I'm really very sensitive to when people give their time and then they walk away thinking that you will make a big difference. I want to be really careful about that to say that we will make as much difference as we can. And sometimes you don't see it as rapidly, meaning that we might send a letter to the Secretary's office yet it's an Institute who really steps in and does some of the work. So we're going to try to work in terms of when we make recommendations we actually try to do that on many levels. One of the nice things about who sits at the table with us is that we all are in a variety of different places in which we can hear and sit down and think about what we've heard today and try and strategize in ways in which to make recommendations that we hope will be able to make some difference in terms of facilitating change in terms of what we've heard today.
I think that despite all the things that have gone on, we started off with some technology kinds of issues and as I've come to learn there has actually been access difficulties in terms of having our President here today that I think have dwindled our numbers. I was surprised and I got a note from someone indicating that there has been some difficulty of that nature which if we had known in advance we would really have done it in a different place or something but we're sorry that that has happened.
Also let me just say from listening to this presentation also our committee needs to be a little more kind of culturally on the ball in the sense that we engaged in heavy technology for dealing with this meeting, we just fell back into our typical let's use the e-mail and I think it's as simple as getting letters out to you. As I understand that's kind of on us of actually getting you formal letters on sufficient letterhead and all that kind of stuff may have slowed us down but I think we've learned. If there is any absence due to our being high tech we do regret that so part of the other ways that we have asked for input have also been in terms of the internet so we also want to extend to those of you who are here the notion that snail mail does work, we will still receive comments that way also so we would appreciate your passing that on to any individuals who you think it would be useful for us to hear from.
Andy other comments from other committee members sitting around the table or any of the panelists before we bring this to a close? If not, on behalf of them, --
DR. FOX: What I wanted to say on behalf of our chair-person of the board, Julia Davis, she appreciates those letters because she doesn't have a very swift CPU or something, she gets so much e-mail it gets bogged up and she can't access it sometimes for a week and what happens then is she'll call us. She has to convince her tribal council that she has a very important meeting to attend so that's the written clarification helps us to help some of those tribal leaders because they don't necessarily have e-mail, the presumption is that everybody does, but we stuffed a lot of some of board members this week just, they wouldn't know how to open up a computer program, they weren't trained to be computer technicians and so there are places in Indian Country where that doesn't necessarily occur. Julie, she was just able to be here briefly this week and she was always one who likes to look at data and she will probably look to some of these studies in trying to build her strongest statements in terms of testimony before the Congress. And I think the idea is that she really is pushing to have a meeting of tribal leadership with the President and she would have been amused today with the challenges we had across the street but she would also, she's angling for a meeting with the Secretary. He has yet as well to hold an official meeting with all of the tribes and we've been lucky to get him over video-conference but not directly so we know that you may not have all of the answers but we appreciate the fact that you have shown us the respect to listen to us today and that you've taken the time to hear our concerns. And I know sometimes for myself personally when I have to stand in for people when I've already on the agenda to speak I sort of feel like I come across really strongly and I don't mean to offend or upset but we have a lot of challenges in Indian Country and we feel that anybody who will listen to us will help us find the answers.
DR. MAYS: Thank you and let me just comment on the technology issue because believe me my humility is bringing me to my knees on this issue. You are not alone. I have now heard from others that we sent these e-mails out that they get a lot of them and that it's the same thing, boxes get jammed up, can't open it up, so I think that we learned so I am happy that for those of you who tolerated us doing technology as our primary mode forgave us and are here anyway and used the old fashioned thing of telephones and called people and told them about this event because for some people sitting in the audience that's exactly why they are in the audience, because they picked up the telephone and they told, you sent e-mail, they picked up the telephone, they called the people to them that an e-mail had been sent to them so again, I think we've learned our lesson.
I also appreciate your being here and sharing those challenges and I think the strength by which you've shared them is not something I think any of us find insulting, instead we find the passion by which it drives us to do what we need to do in terms of thinking carefully about how can we respond to what you shared with us. We thank you.
I'd like to draw this to a close because I know that some people have planes to catch and I know that it's been a long day. I really want to again acknowledge the staff who really were the ones who made this happen and the way that they made it happen. They even convinced me that we should have only a full day today because there was a lot to be said and I listened smartly to them and I see where we could have had another day even in terms of the amount of information we were able get so this is a beginning and I thank everyone.
[Whereupon, at 3:48 p.m., the hearing was adjourned.]