Denver, Colorado
The Subcommittee on Populations of the National Committee on Vital and Health Statistics (NCVHS) held hearings on September 27, 2002, at the Adams Mark Hotel in Denver, Colorado. The meeting was open to the public. Present:
September 27, 2002
Background of Subcommittee and Overview of Meeting
Dr. Mays explained NCVHS's long history of concern about the health of racial and ethnic minorities and the Subcommittee's current focus on examining whether there was adequate data on racial and ethnic groups to enable the Department and others interested in the elimination and reduction of disparities to comment on the health status, health behaviors and healthcare of the groups. She described the previous sessions in this series of hearings seeking to know more about data needs, data collection procedures, measurement issues, and barriers to collecting data on racial and ethnic minority groups that could be used in the service of determining health disparities and putting forth programs that eliminated or reduced those disparities. Dr. Mays noted that the day's questions were posted on the Committee's Web site (www.ncvhs.hhs.gov) in recognition of the diversity of the American Indian and Alaskan Native (AIAN) community and as a way of getting additional input and expressed appreciation for all that would be shared and discussed that day.
Opening Remarks: Eliminating Health Disparities in Indian Country
Ms. Fox said enormous disparities existed for AIANs in access to quality healthcare. Chronic illnesses were critical in many Indian communities. The rates of diagnoses and morbidity were many times higher than the national average and continued to grow. Infant mortality was a crisis and accidents were the leading cause of death for young AIAN men. AIANs were diagnosed with cancer younger and at more advanced states and reached terminal stage quicker. Diabetes was at epidemic proportions. Heart disease was a serious problem. AIANs were more likely to attempt and succeed at suicide. Indian Health Service (IHealth Service (HS) in many ways was a model program, but it was never adequately funded to meet patient need and currently was only funded at 70 percent of need. Many health situations were preventable but only illness was treated, there was no intervention or ability to study or understand trends or present evidence to potential funding sources. Over 32 percent of AIANs lived below the poverty level, but only 11 percent were on Medicare, due in part to ineligibility. Disparities in research data worsened due to the lack of statistically significant, comprehensive, or accurate research data. Ms. Fox encouraged AIANs to partner with research organizations and providers in developing effective research. She said partnering could facilitate inclusion of local and traditional knowledge into research and science, influence research priorities, provide feedback mechanisms and ensure that native people shared in the economic benefits derived from their intellectual properly.
Identification of American Indian Alaska Native Health Disparity Issues
Dr. Joe noted the difficulty of linking American Indian health situations with other urban groups. She said the change with ethnic identity in the 2002 Census added complexities to the identification issue. Dr. Joe noted limitations with NCHS because AI/ANs weren't “statistically significant.” Accurate data was necessary for developing intervention or inter-prevention, but statistics told more about what AI/ANs died of than about regional health differences. Dr. Joe recommended a SEER database identifying outcomes, noted IHS data was limited to people who used related facilities, expressed frustration at the limited information on quality of care (it was difficult to determine how statistics alone could give information about prevalence and co-morbidity), and the lack of data on discrimination. Health data was uneven. There was little long-term viability of demonstration programs. Dr. Joe advocated inclusion of socioeconomic data and measures of family support and called for the recognition of traditional healers. Data gaps (e.g., alcoholism, suicide and homicides) also needed to be addressed.
Identification of American Indian Alaska Native Health Disparity Issue
Noting AIANs were a geographically dispersed population with enormous cultural and linguistic diversity, Dr. Rhoades contended there was no truly representative report of their health. Non-participation, distrust and disinterest led to undercounting. Changes in the denominator population made interpreting trends difficult. Major sources for health status reports (U.S. Census and NCHS) took birth and death certificates for the numerator and denominator, but certifiers often erroneously stated ethnicity or race. Dr. Rhoades noted misclassification was a problem in vital event rates. Misclassification varied widely by region and estimates of the approximate effect of the combined bias due to race, misclassification, and under enumeration resulted in about a 21 percent underestimate of mortality rates for AI/ANs. Dr. Rhoades discussed well-recognized areas of health disparities (e.g., diabetes, unintentional injuries, suicides and violence, life expectancy, alcohol and substance abuse) and said atherosclerotic heart disease was an under-recognized problem. She noted a marked geographic diversity in diseases. Another major disparity was lost years of potential life because people died at younger ages to injuries and violence and in middle age due to heart disease. She said the Behavioral Risk Factor Surveillance System (BRFSS), NHANES and NHIS were useless for AI/ANs and expressed concern that effective interventions for some disparities (e.g., suicide, alcohol abuse) weren't known. She reiterated that funding was a huge problem. Dr. Rhoades recommended supporting reservation- and urban-based national data networks using compatible methodology. Community networks or epi-centers also had to be supported and expanded. She acknowledged the initiative, drive and commitment of many communities and emphasized that tribal entities had to govern what was looked at and supporting community priorities.
Discussion
Over-sampling and special surveys were considered as ways to address small sample sizes, statistical insignificance, and problematic urban population denominators. Participants noted IHS didn't have a research budget and identification and sampling for AIANs was difficult. Studies used different definitions and methodologies. A key barrier was money and convincing funders required considerable advocacy. National study efforts were important, but should be done through area health boards working with entities like the National Indian Health Board (NIHB). Sizeable patient-level data requiring surveying thousands of individuals could be daunting and required time-consuming tribal involvement. Tribal or community participation was key; many native people felt research had done them injustice and tribes needed to have input and demand that research benefit them. Noting not enough was done about the health status of young AI/ANs, it was pointed out that AI/ANs supported their children and, if the focus was on solutions to their problems and future, people might look at issues they'd otherwise dismiss. Participants discussed building an infrastructure or research consortium of agencies and tribal groups that collect data to work on common, standardized, useful data collection and construct a research agenda and plan. About half of Indian Country could participate in that effort now as a consequence of NARCH and epi center grants, but without everybody being supported with epidemiologists that work would be hard to do. Tribal colleges were seen as key partners in producing more AIAN health researchers. The last five years showed that they were developing successful models and that the key was questions driven by the tribe.
Urban/Rural Indian Issues
Ms. Russell noted that over half of American Indians lived in urban areas. Urban Indians historically suffered from poor health and substandard healthcare services. The National Council of Urban Indian Health (NCUIH) strongly believed that the federal government's obligation to protect American Indians didn't stop at the reservation boundary. Several factors made identifying the urban Indian population and collection of accurate health status data difficult: lack of a clear, uniform definition of urban Indians, dispersion of urban Indians throughout metropolitan areas, the high residential mobility among urban Indians. The Urban Indian Health Institute (UIHI) was designed to provide leadership and health information to increase recognition of health status deficiencies affecting AIANs through a central point of focus for health surveillance, research and policy considerations. UIHI had three components. The Urban Indian Information Center (UIIC) was a Web-based solution to gathering and storing information on the health of urban Indians. The Urban Indian Epidemiology Center (UIEC) was designed to study and analyze the data collected through UIIC and other outlets to understand health dynamics affecting urban Indians. The Center for Tele-Health, Tele-Education and Advanced Communication would focus on best practices using teleconferencing technology to improve communication and education alternatives.
Transitions Report
Ms. Fox discussed Transitions 2000, a Five Year Initiative to Restructure Indian Health and it's implications in terms of collecting data on race and ethnicity for AIANs to serve in eliminating or reducing health disparities. The Restructuring Workgroup looked at The Institute of Medicine's (IOM) analysis of where disparities occurred amongst AIANs, evaluated IHS's internal redesign requirements, and gauged the impact of HHS initiatives. The challenge in restructuring was to determine how Indian Health Care could continue to provide services in a changing environment. The Workgroup opposed much of the consolidation and many initiatives because budget authority would be removed from the agency and there'd be less control as staffing was lost. Recommendations included memorandums of agreement to improve communications and coordination, added funding to IHS from other HHS divisions, and specific recommendations to increase the National Institutes of Health's (NIH) and the Centers for Disease Control's (CDC) role in additional research and other activities. The report noted that the limited consultation between Secretary Thompson and the tribes was a key concern. Feedback about this report was being sought from each tribe. NIHB believed that for now IHS and Tribal Systems should be exempt from further downsizing and the agency should be doubled to support the five-year vision of the Restructuring Workgroup. NIHB said it also should be funded to complete one billion dollars in sanitation and health facilities construction.
Discussion
Participants noted a number of things that contributed to the improved data set, as well as inadequacies in incidence data and information on survival. NCI funded a multi-institute cohort study following healthy young adults longitudinally over time. Panelists agreed that, theoretically, a specialized NHANES administered to AIANs could work but would be a problem for data collection agencies and require dedicated commitment from many forceful personalities. NCI had a particular commitment to population health sciences and was willing to fund efforts to understand health in populations. Testifiers emphasized training was important to ensure that researchers were available in communities where the data was gathered. Ms. Fox noted that as more tribes understood challenges related to diabetes, including the need for data, an advisory group of tribal leaders worked to increase in five years limited money to at least $100 million dollars each year in research efforts and prevention. NIHB held discussions about supporting and authorizing a tribal leader committee on cancer and was considering efforts directed at heart disease and diabetes. Noting that the Restructuring Initiative Workgroup should be applauded for developing population specific special emphasis disparities focused on disease conditions that most affected AIANs, participants discussed the thinking that went into identifying life expectancy as a special interest disparity.
Tribal Self-Governance
Mr. Roberts explained IHS used a Resource and Patient Management System (RPMS) to collect information. But a lot of tribes turned to off-the-shelf computer systems (COTS) when they took over management of their health operations. Now, during the IHS budget process, the ability to aggregate data was lost because much that was necessary to make the annual case for the budget didn't make its way to IHS. So little funds remained within IHS that issues of data quality, misclassification or miscoding were no longer priorities. Looking at basic day-to-day issues, the focus was on tribal health facilities. Information Systems Advisory Committee (ISAC) prioritized spending within IHS. Priorities were revenue generation, connectivity to COTS, training and staffing, technical support, high speed connectivity, patient records, and last of all data quality. IHS intended to invest in information systems that enabled improvement in patient care and third-party collections. ISAC recommendations for improving data quality included establishment of a national data center at NPIRS; a form data processing procedure for area offices; training of clinical and data entry personnel; and development and implement assessment intervention tools, software, methods and best practices. Dr. Mays emphasized that in part not having the quality of data needed had nothing to do with mistrust, distrust and negotiations, but with funding necessary infrastructure and understanding how that infrastructure might be similar or different.
Discussion
Noting that the Association of American Indian Physicians was making a concerted effort to increase third-party billings (members worked with two data systems) Dr. Rhoades cautioned that practical implementation frustrated those on the front lines. Participants said the biggest system challenge was developing interfaces and reiterated the difficulties of getting data from multiple COTS into the RPMS and NPRIS, and that it all came down to money for systems and staff. Testifiers reported a recent discussion in a federal meeting in Arizona about whether traditional healing practices should be federally funded. Ms. Fox said she didn't think traditional healing practices would soon be incorporated into a diagnostic system, but she emphasized the need for culturally competent patient classification. Participants reported that CMS would look into alternative medicine and sites for demonstration projects, for a long time IHS had had traditional healer consultants or employees working with clients in the mental health program, reimbursements were made for small demonstration projects involving traditional healing practices, and some tribal communities negotiated to include payment for services of traditional healers as part of their insurance coverage. Ms. Iron Cloud told two personal stories in order to help others understand traditional healing.
Disparities in Hospital Rates of American Indians in Rural California
Ms. Fox summarized that Disparities in Hospital Rates of American Indians in Rural California provided evidence that officially-recognized California area Indians eligible for rural contract services of IHS had higher levels of hospital healthcare needs than other California groups and that those needs were 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 therefore underestimates their healthcare needs substantially. Though disparities in some hospitalizations rates were small, Ms. Fox said they should be interpreted with caution until statistical analysis was completed. The presence of disparities over a wide range of ages for men and women supported the general conclusion that additional health resources, especially resources that improve availability, use, and quality of ambulatory care, were needed in IHS's rural contract health service delivery area in California. Ms. Fox said California was a perfect example of how history, time and the law affected the availability of appropriations. According to statistics, California was the largest populated state in terms of AIANs and a good place to begin new research initiatives. Ms. Fox said the California Endowment (CE) supported these efforts and would appreciate additional resource support from federal agencies beyond IHS.
Discussion
Dr. Rhoades noted that this study was an example of the state and the California Rural Indian Health Board (CRIHB) cooperating to get data. She said a lot of communities corrected misclassification and disparities by partnering their data sets. Linking was key to resource allocations. She noted Dr. Rhoades hit upon one of the critical things: partnerships. Sometimes partnerships came out of passion, dedication and commitment. Other times they came out of a sense of efficiency of funds and determining whether costs could be allocated differently. Dr. Dr. Mays noted another theme heard strongly was people determining their own destiny as cooperative partners with the ability to be the ones asking questions and having a sense of direction in partnership with others and their expertise. The meeting's packet drove home the extent of the disparity and the question loomed about the type of data collection that would enable determining the extent of health disparities and how to move toward interventions and preventions. The presentations helped to understand the complexity. They'd heard there were best practices and great partnerships. She said it would be useful to get a sense of where this community was in having the foundation, partnerships and science to move as rapidly in terms of intervention and prevention. Some of that came from resources, diversity, and having identified advocates in place. Emphasizing that the Subcommittee's role wasn't as advocates but as facilitators of change, Dr. Mays said they would make as much difference as they could.
DETAILED HEARING SUMMARY
Background of Subcommittee and Overview of Meeting
Dr. Mays explained that as a federal advisory committee NCVHS had a long history of concern about the health of racial and ethnic minorities. Since the 1970s, the Subcommittee, under various names, had been active in making recommendations to the Secretary and others about the collection of data on racial and ethnic groups. The Subcommittee's current focus was on examining whether there was adequate data on racial and ethnic groups to enable the Department and others interested in the elimination and reduction of disparities to comment on the health status, health behaviors and healthcare of the groups. IOM, various foundations and a number of federal agencies within HHS were exploring this query.
The Committee had embarked on a series of hearings, seeking to know more about data needs, data collection procedures, measurement issues, and barriers to collecting data on racial and ethnic minority groups that could be used in the service of determining health disparities and putting forth programs that eliminated or reduced those disparities. The first hearing looked at population-based datasets collected by the federal government and others. Testifiers talked about how disparities were measured and determined and formulas used. A presentation on the collection of vital statistics and issues as well as concerns relative to collecting them with racial and ethnic minority groups was heard at a recent meeting. A hearing on November 8 in Philadelphia will address state activities and their capacity to collect data that can facilitate their ability to determine, reduce and eliminate health disparities in racial and ethnic groups. Upcoming hearings will also look at these issues for Asian and Pacific Islanders and the role of language in the collection of data. Dr. Mays said the Committee was busy, but welcomed this opportunity to hear about the issues for AIANs.
She noted that the day's questions were posted on the Committee's Web site (www.ncvhs.hhs.gov) in recognition of the diversity of the AIAN community and as a way of getting additional input. Dr. Mays said the Subcommittee was sensitive to both urban and rural issues, and knew not everyone who was an expert would be able to travel. She encouraged people to send comments.
Dr. Mays explained the hearing process. After each hearing the transcript and materials connected with the hearings were posted on the Web site. The Subcommittee looked at themes and recommendations and strove to determine how to most effectively pass on the information within its purview (e.g., meeting with the IOM, giving testimony at hearings, writing letters to the Secretary). At times the process could be slow, but the Committee tried to be as effective as possible in facilitating change. In that spirit, Dr. Mays expressed appreciation for all that would be shared and discussed that day.
Opening Remarks: Eliminating Health Disparities in Indian Country
The NHIB, based in Denver with a satellite office in Washington, D.C., represented interests of all 561 tribes across the United States. Directors were appointed to serve on the NIHB board by their respected areas. Ten represented area health boards; tribal governing bodies elected two others. Elected tribal officials, health directors and appointed representatives made up an active set of alternates. NIHB advocated on behalf of tribal governments in terms of policy development, research and legislative advocacy. It also contributed training and technical assistance and hosted an annual consumer conference. The 2002 conference was titled Facing the Challenge, Fostering Tribal State and Federal Relationship to Improve Health Care Delivery. Over 3,600 individuals and 14 other countries participated in Healing our Spirit Worldwide, a large international conference hosted by the Subcommittee on Populations. Some 180 workshops addressed issues related to addictions, health and governance. At least 500 representatives noted concerns about indigenous health.
Remarking that germ warfare was a current issue in the discussion about homeland security and anthrax, Ms. Fox noted that Indian people were familiar with the stories about small-pox- infested blankets used to start an epidemic among American Indians. 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 were over only 250,000 Native Americans survived. According to the U.S. Census Bureau 2000, there were approximately 4 million self identified AIANs of which at least 2.5 million were noted as living in the United States. IHS presently served about 1.6 million of them. Ms. Fox noted it would be interesting to determine how many Indian people survived and the resiliency factors that contributed to their survival. She suggested much of it was because of traditional Indian medicine and culture.
The War Department was involved in epidemic control in the 1800's. Sometimes they supported biological germ warfare, other times they helped save Indian people. The department became the agency responsible for the control of Indian people and, through time, became more willing to work for the survival of Indian people. Eventually the responsibility for Indian people transferred to the Bureau of Indian Affairs, under the Department of the Interior. Folks responsible for lands, minerals and resources were also responsible for the health of Indian people. Ms. Fox noted a lot of Indian people thought that was crazy.
There were over 800 treaties with Indian people. AIANs were separate and unique from other minorities in that they had both a political and legal relationship. The Dawe's Allotment Act in the 1800's destroyed much of that relationship and disrupted the culture and health. The Meriam Report conducted by the Bureau of Indian Affairs noted a significant decline in health into the 1900's. The Snyder Act was then created to address the conservation of health. In 1955 the IHS became responsible for healthcare for Indian people in this country, functioning to see that comprehensive primary healthcare became available on or near reservations. These health services represent the federal trust responsibility in the United States for healthcare. The mission of the IHS was to raise the health status of AIANs to the highest level possible. In the past 45 years or so, the IHS worked progressively to improve the healthcare of the Indian people and their communities. Health status improved over time, but the disparities were still significant.
Dr. Fox noted that the economic status of AIANs was dramatically different than the economic status of the general population. Over 32 percent of AIANs live below the poverty level due to unemployment and underemployment, compared with 13 percent of the general population. However, only 11 percent of AIANs are on Medicare. This low number is due to both a lack of education about Medicare enrollment and benefits, and a lack of eligibility. A subsistence lifestyle, such as many AIANs have, meant not being able to pay in the necessary number of quarters through payroll deductions to meet Medicare eligibility. Ms. Fox noted that Good Morning America reported that unemployment in America was reaching possibly 5 percent, and struck the theme that this was intolerable. She added that the Oglala Lakota people in the Community of Pine Ridge South Dakota reservation, less than four hours from Denver, had an unemployment rate of up to 80 percent.
Many Indian people live in 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 is generally a lack of access to job-based insurance. Another important factor is the lower rate of education among AIANs. Only 65 percent of AI/ANs over 25 graduated from high school. Uneducated people typically have a tougher time getting good jobs with good benefits, are less likely to be informed of symptoms and early warning signs of disease, and less likely to have meaningful conversations and ask questions of their physicians. These factors contributed to limited health.
Chronic illnesses have become critical in many Indian communities. The rate of diagnoses and morbidity are many times higher than the national average and continue to grow. Diabetes has reached epidemic proportions and the incidence is 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 daily blood sugar monitoring. Consequently, the longer-term impacts of diabetes including kidney failure, amputation and vision problems have reached epidemic levels. One non-Indian staff woman has been diabetic for most of her life and tests her blood sugar nearly every day. She couldn't believe it when told that they were fortunate to get 100 million test strips for Indian Country and that people were excited that they could test their blood sugar three times a week.
Heart disease was another 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 at least one of these risk factors. Men over age 65 typically have two or more factors. Again, the lack of preventative and rural patient care meant that patients with heart disease weren't seen until the situation was severe.
Cancer diagnoses rates within Indian Country are fairly comparable with the national average. However, when examined more closely, AIAN patients were diagnosed younger, reached a terminal stage quicker, and when diagnosed the disease was already at a more advanced state. All had minimal access to cancer specialists and new experimental treatment program. These problems were clearly linked to a lack of funding and available resources.
Ms. Fox emphasized that many health situations were preventable. One preventable situation was injury and poisoning. Rates for both exceeded the national average, especially when viewed regionally. AIANs had much higher rates of death due to poisoning. A number of environmental factors at the root of this disparity include 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 AIAN men ages 12 to 17, accidents were the leading cause of death. This is directly related to the prevalence of risky, illicit behaviors. American Indians in this age group had a higher rate of drug use, binge drinking, driving under the influence of alcohol, use of cigarettes, group-against-group fighting, and carrying handguns.
Infant mortality continued to be a crisis for Indian communities. In other populations with high infant mortality the disparity was typically due to congenital birth defects. However, amongst American Indians and Alaska Natives, the rate of Sudden Infant Death Syndrome was two-and-a-half times the national average.
Behavioral issues, lack of adequate medical care, and new mother support were 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 had their first child before the age of 20. Adequate prenatal care was well documented and there were efforts to reduce the level of infant mortality and specifically SIDS. Mr. Fox remarked that it was impossible to see the complete picture of the healthcare situation in Indian Country without examining the behavioral health situation. Behavioral issues worsen a number of other health conditions and in turn were worsened by other health situations.
The high rate of alcoholism amongst American Indian people contributed negatively to many other health situations within Indian Country, including behavioral issues, overall health levels, the economic situation, accident and injuries. The AIAN population was more likely to attempt suicide and more likely to be successful in their attempts. Other issues feeding into this include problems with substance abuse and economic desperation. Suicides were 72 percent higher than all other races.
It was estimated that as many as 75 percent of Indian women have been victims of domestic violence. Additionally, these women were more likely to require medical attention for injuries sustained as a result of domestic violence. Those issues were often perceived as stemming from consequences of the federal policy of forced removal where two-to-four generations back, many Indian children were moved to boarding schools. Discipline and anger patterns were established in relationships that flow down through families. Ms. Fox said one reservation where enrollment probably didn't exceed 7,500 recently reported 800 cases of sexual abuse. Only four of those 800 cases were successfully prosecuted.
Enormous disparities existed for AIANs in access to quality healthcare. In many ways, IHS is a model program, however, it was never adequately funded to meet patient need and currently was only funded at 70 percent of need. Sometimes that ranged from 40 to 85 percent for different tribes. The vacancy rate for professionals was approximately ten percent and there was minimal funding available for specialty care. No oncologists have been employed in any of IHC's 515 direct, secondary, or tertiary level care medical facilities other than one oncologist recently available on a part-time basis at the Alaska Native Medical Center in Anchorage.
Because of the lack of monetary and human resources, the health situation has become critical for American Indians and Alaska Natives. Many patients have been 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 went unreported so that number was very conservative. Ms. Fox believed the figures related to specialized medical care denials were actually in the hundreds of thousands. The "loss of limb" rule applies when determining whether or not contract healthcare may treat a patient. Only patients that had reached a very critical condition were seen. Preventative and well patient care was rare and that extended to vision and dental care.
Disparities in research data worsened due to the lack of statistically significant, comprehensive, or accurate research data. The population was small, geographically diverse, and it was hard to identify patterns of incidents and treatment. Additional resources were available to help reduce disparities, however, the relevant information might not have been available to secure the funding through grant providers and the federal government. It was 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. Most obvious, was the fact that AIANs were statistically insignificant. This reduced the possibility of funding from places such as NIH, CDC and private research efforts. Recent organized efforts were made by high-powered lobbyists to double the funding for NIH, increasing it by two-to-five billion dollars. Indian Health had a budget of $2.8 billion to provide for all the comprehensive healthcare of Indian Country. Though poor people were organized, there weren't enough political contributions to make a difference. NIHB worked hard to seek at least a one-and-a-half percent allocation of those resources to address needs particularly related to cancer, heart disease and diabetes.
Difficulties in the area of health surveillance research and information included the fact that within the public health arena epidemiology, biomedical research, health systems research and health education were considered distinct specialties, each with it's own type of training, funding streams and activities. In Indian Country, these activities tended to be lumped (generally they weren't a source of direct patient care, but were focused at universities and agencies outside of the IHS system). They required quantitative skills that weren't understood by most people and the benefits of these activities weren‘t always immediately apparent to AIAN communities. Ms. Fox noted the situation had improved as more AIAN professionals entered these fields.
Six epidemiology centers had been established since the Indian Health Care Improvement Act in 1992. Epidemiologists helped tribal governments figure out their epidemiological data. Still, comparatively more of the resources went to state governments who count Indian people but don't necessarily provide service to tribal communities.
Most tribes understood that factual data was needed to put together a compelling pitch for additional funding. However, historically they'd participated in research without seeing the ultimate benefit or positive results and they were reluctant to divert limited funds from the provision of basic health services.
Ms. Fox reiterated that there was also the issue of limited resources. If one was busy as a physician or nurse trying to fix problems, there wasn't time to do research or data analysis. IHS probably secured no more than $1,400 dollars of care per capita annually. Americans who participated in Medicaid got at least $3,600 dollars worth of care. Because the funding was discretionary, not mandatory, the funding base for Indian Health was very limited. Just the illness was treated, there was no prevention and no ability to study what was going on, understand it, or present evidence to make it compelling to potential funding sources.
In this information age, various types of data and information were necessary to provide health services. Policy makers needed information on the demography and health status of AIANs so they could identify unmet needs, monitor health status over time, and take responsibility for funding at an appropriate level. Health care managers need information to assess the quality of care, health outcomes, and identify opportunities for improvements. They also needed information regarding the costs of delivery of services and revenues in order to maximize the resources available to meet local needs. Health care providers needed research to understand strategies to prevent and treat diseases in the most effective and culturally competent ways. Consumers also needed information that translated medical research into an accessible format allowing them to make informed choices about lifestyle and treatment plans. Although there are great Web sites (e.g., American Cancer Society and American Diabetes Association), Indian Country hadn't had access to that information due to a general lack of phone systems and therefore minimal access to the Internet.
Ms. Fox said the size of many communities within Indian Country created a big problem with data collection. Research projects that attempted to focus on estimates and projections of incidents and prevalence of disease within specific geographic communities were often flawed because the numbers weren't statistically significant. Many times these issues weren't corrected when a national perspective was taken. For example, a high disease incidence in the Northeast might be erased by a low disease incidence in the Deep South, resulting in information that wasn't meaningful on any front. Not all communities experienced suicide. And if the majority didn't, even 15 suicides on one reservation became statistically insignificant.
Gaining national data was often difficult. There were very few comprehensive national databases. One reason for this was that many compacting tribes viewed participating in national programs as optional. Also, their own systems for capturing and tracking data might not be compatible with national systems and databases. For the most part, there wasn't a collectable set of data. The issue of self-governance also complicated data collection. Presently, at least 52 percent of the IHS resources were contracted or compacted by tribal governments who provided for healthcare in their community. Services were improved and expanded because tribes were more actively involved in their programs. But because IHS hadn't advanced information technology extensively, many tribes used off-the-shelf programs to do cost accounting and in-house third party reimbursement, sacrificing development of data collection.
A significant problem resulted from racial misclassification. As peoples continued to blend and intermarry it became more difficult to commit to a single racial classification (e.g., how was a person with one Indian grandparent, two white grandparents and one Hispanic grandparent classified?).
Ms. Fox said it was 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 generated from a study. Consequently many tribal governments had the legal right to negotiate reporting requirements on an individual basis during their funding negotiations.
Data on the health status of the local community could be very useful for local planning, priority setting, and funding allocations. Additionally, tribes needed this data to effectively apply for grants and additional resources. Difficulties included the small numbers that made statistical errors a high possibility and a lack of research specialists that made it hard for tribes to design effective research programs. A further problem came with the definition of the population. There were three basic subsets: the user population at any given time, everyone who ever used the IHS tribal or urban programs, and the entire population of the tribe. Ms. Fox noted benefits and drawbacks to using each set of numbers, depending on what was measured. The population had to be stable to operate and achieve accurate results. Several initiatives were being developed to help tribes measure accurate local data on health status, such as the IHS funded tribal epidemiologic centers. The purpose of these centers was to provide technical assistance and data monitoring for the tribes and their regions; their function and location had improved the funding of Indian Country.
Accurate and comprehensive data didn't exist on the health status of urban AIANs. These programs were under-funded and each provided a different level of service. Many patients had to go to several healthcare facilities and no data was collected for the entire experience, or population. Patients also were referred to non-Indian urban health clinics that didn't record ethnicity, much less additional data.
Ms. Fox offered suggestions for improvements. Noting Indians were wary of being the subject of yet another research project, she encouraged AIANs to partner with research organizations in developing effective research and to answer Indian healthcare providers' questions. Partnering could facilitate the inclusion of local and traditional knowledge into research and science, influence research priorities, provide feedback mechanisms and ensure that native people shared in the economic benefits derived from their intellectual properly.
Ms. Fox reported that a number of academia programs were underway to increase the number of AIAN researchers who could conduct high-quality research and successfully apply for grants from organizations such as CDC and NIH. Ms. Fox also said Indian healthcare consumers had to be educated so they understood the importance of participation in research programs and the necessity for accurate data. Grants and programs that resulted from health research had to be promoted so consumers understood the value of research.
NIHB published a couple documents in recent years about Medicaid and managed care policies. It has done studies for foundations about consumer and tribal choices in the selection of health programs and looked at quality of care issues in a nationwide study on self-determination. Some 210 of the 554 tribes participated in a comprehensive, yearlong study. Researchers worked at the direction of tribes. If one worked with tribally controlled organizations the outcome was much better research. In the process of doing the publication, learning about copyrights and working with publishers, NIHB developed a relationship with the American Public Health Association (APHA). Much of the information shared that day could be found in Promises to Keep, APHA's public health policy primer for AIANs in the 21st Century. A number of former NIHB staff were part of the research team who put together the study on self-determination and produced this book. Ms. Fox recommended it as a resource regarding issues of chronic and preventable disease in behavioral health as well as issues with health data. Noting there were no other recent books about American Indian health, she said hopefully there would be more tribally controlled published research for the benefit of AIANs.
Identification of American Indian Alaska Native Health Disparity Issues
Dr. Joe said her recent experience with the IOM study emphasized the issue of racial and ethnic health disparities. The gap was big and troublesome enough that additional initiative was taken to do a quantitative study to deal with questions that were important to include in this report. She compared concerns related to disparity to the concerns of a developing country, noting a recent European health report that linked the relationship between social and economic factors and poor quality of health in a variety of cultural settings and groups. The report noted a great difference in health status across countries and among groups within countries. The major determinants of health were linked to social and economic factors. This connection was commonly made indirectly using census data to highlight the extent of poverty and the unparalleled extent of poor health. Dr. Joe said having this socioeconomic or social data giving a broad stroke available in the health data collected on everybody would be useful at the healthcare delivery setting.
Dr. Joe noted the difficulty of linking American Indian health situations with those of other groups living in urban environments. And she said the change with ethnic identity in the 2002 Census added complexities to the whole identification issue. Self-identifying meant different things to different people. As one physician reflected even on good days, they were confused about who should be considered AIAN in measuring health disparity.
For a number of decades, much that was known about the health of American Indian and other groups was based on mortality data and there were problems with racial misclassification. It was common for someone born as an American Indian to die as something else. A series of studies looking at birth records and deaths certificates found about 20 percent of people misclassified. There was no control over who put that data on either the birth or death certificate. Sometimes nobody even asked. Recalling that after she recently refinanced her home she noticed that the data identified her as Hispanic, Dr. Joe pointed out that the answer to that federal requirement should have been her choice, not someone else's assumption. She said it wasn't clear how this could be solved without funding and training.
While praising NCHS as a valuable resource for health data information, Dr. Joe noted limitations for tribal communities because AI/ANs weren't statistically significant enough to warrant individual attention and were lumped into other categories. Accurate data was necessary for developing any kind of intervention or inter-prevention and statistics ended up telling more about what AI/ANs died of than revealing any regional health differences or that the problem in the Southwest was different from Alaska. Dr. Joe urged the Subcommittee to work to resolve this problem.
Until about eight to ten years ago, the New Mexico tumor registry was the major data source for cancer in AIANs. The registry had data for Arizona and New Mexico. Dr. Joe said it was really a disservice for tribal communities throughout the rest of the country because the cancer pattern in New Mexico and Arizona was very different from North Dakota or South Dakota, or even Washington State.
She noted that the emphasis on regional data has been helpful. For instance, now it's known that lung cancer is more of a problem in the Northern plains than the Southwest and there is a tumor registry in Alaska. Cancer there was a leading cause of death for both men and women, although statistical rates indicate it is the second leading cause of death. In addition, the Cherokee nation in Oklahoma got funding from the National Cancer Institute (NCI) to set up a cancer registry. Local information allows problems to be addressed more appropriately.
Dr. Joe said cancer rates were low, though how low wasn't clear. Native people tended to get diagnosed with cancer at such a late stage they were more likely to die. Efforts were underway to develop cancer survivor groups to reverse the assumption of imminent death. Dr. Joe recommended it would be optimal to have a SEER database that identifies outcomes as well as the stage of cancer when diagnosed.
IHS data was the gold standard. But that data was limited to people who used their facilities and/or facilities funded through their resources. This resulted in problems with poor data sets on urban dwellers and others who didn't live on reservations or use IHS. Comparison studies had been done with all races, but it would be meaningful to compare data for American Indians on reservations versus urban dwellers or reservation data versus the rest of rural America. AI/ANs had a young population and risk-taking behaviors were evident in statistics of unintentional injuries and accidents. And data collected at IHS didn't routinely include economic information beyond data about health insurance.
Dr. Joe expressed frustration at the limited information on quality of care. Acknowledging the controversy over what to include, she expressed interest in sitting at the table to work out something meaningful for interested communities.
Co-morbidity was another area of frustration. IHS had fantastic data but it took time and money to make it meaningful. Statistics alone didn't help one understand the contradictions related to cancer medications and the treatment of Type II diabetes. It was difficult to determine how that data could give information about prevalence and co-morbidity.
Quality of care was another concern. Many programs serving tribal communities seemed primarily motivated to collect data to justify funding and data collected didn't measure the health status of the community and wasn't useful. Data on discrimination was also lacking. Information was anecdotal. Dr. Joe recommended that accreditation and other methods of evaluation include measures of discrimination.
Even though some tribal communities taking over healthcare delivery considered collecting health data an option, Dr. Joe noted healthcare providers at a local level were concerned primarily with delivering care. Data was secondary and those addressing collection had their work cut out for them. She pointed out that health data was uneven. The disease of the year was well accepted and related research topics with special demonstration projects were funded. Two or three years down the road, the monies were gone and nothing continued. Dr. Joe said there was no long-term viability of such demonstration programs in many communities served.
Dr. Joe hoped the subcommittee would continue working with entities serving AI/ANs and was pleased Edna Paisano brought her background with Census and IHS to the Committee. Getting a better measurement required good data and additional resources. She suggested designating urban and reservation communities as data set areas where more depth and comparisons could be achieved. Noting this tribal cultural group survived poverty with family support and extended kin, Dr. Joe advocated inclusion of socioeconomic data and measures of family support. Dr. Joe also called for the recognition of traditional healers who were a continuing resource and measurement of their contributions to mental health services.
Data gaps also needed to be addressed. Problems of alcoholism, suicide and homicides weren't seen in the medical or clinical arena until someone came in for detox or there was an accident or death. Most of the medical arena was willing to come to the rescue of a patient for detoxification, but thereafter it was considered a social problem and people were put back into the community. Innovative approaches were needed. Ms. Fox emphasized that preventative programs needed to be evaluated and documented.
Dr. Joe recommended emphasizing collaboration, evaluating what the Census data did to measure health disparities and how NCHS could best be used. She noted the dialogue with IHS provided critical information. Two reports published annually, Indian Health Trends and Regional Differences, were important resources when making proposals to the Indian research plans. Dr. Joe stressed that improving those resources would benefit, not only the communities, but also the people trying to improve the health status of AI/ANs.
Dr. Joe reiterated that race and ethnicity information were important, though many people thought it was an infringement of people's rights or privacy. She emphasized that those concerned about doing something about health disparity needed to take a stand and say it was important.
Identification of American Indian Alaska Native Health Disparity Issue
Dr. Rhoades contended that there was no truly representative report of the health of the U.S. Indian population. Collecting nationally representative data was extremely difficult in terms of funding and manpower. AI/ANs were a geographically dispersed population with enormous cultural and linguistic diversity, factors that discouraged many researchers funding large projects.
Dr. Rhoades explained that the denominator for national statistics (people who self-identify as American Indian or Alaska Native) came from the U.S. Census. Some 4.5 million people said they had some American Indian heritage; about 2-2.5 million identified as predominant Indian heritage. She noted that non-participation and distrust among some communities led to one form of undercounting. Another form occurred when Census workers decided that people who were “a 25 mile drive” wouldn't be counted. She recalled a debate a few years ago about using samplings to account for AI/ANs and others who would otherwise be represented disproportionately. Those samplings never happened.
Ever since the 1970's when it became more acceptable to acknowledge Indian ethnicity, more people declared themselves Indian, making trends over time difficult to interpret. Dramatic changes in the denominator population in some years made it hard to discern the truth.
Birth and death certificates are used in describing mortality rates. But Dr. Rhoades noted that, rather than having the person or parent identify ethnicity or race, the certifier often made that determination; judgments like the one about Jennie Joe affected many statistics.
Major sources for health status reports are the U.S. Census and NCHS that takes birth and death certificates for the numerator and denominator. IHS uses similar methodology in reports, trends and regional differences. These gold standards, the national Indian data, are IHS service and user population specific, which is about 60 percent. Dr. Rhoades pointed out that many people consider a 60 percent sample insufficient. She also noted that most people think rural and urban differences are minimal enough that one can extrapolate from reservation-based to urban-based communities. Dr. Rhoades said about 40 percent of the urban population weren't directly served by IHS facilities. NCHS attempted to compile that missing data, though those statistics reflect both urban Indians with and without access to IHS direct care or tribal facilities, so the urban picture remains murky. The few published statistics relied on academic collaborators from one metropolitan area; little was known about whether data were exportable to other communities.
Dr. Rhoades said misclassification was a problem in vital event rates. The recent National Vital Statistics Final Report on Mortality acknowledged that estimates of the approximate effect of the combined bias due to race, misclassification, and under enumeration resulted in about a 21 percent underestimate of mortality rates for AI/ANs. In comparison, white and black mortality rates overestimated by one to five percent. In one city, a study found 37 percent of those marked as Indian infants on their birth certificate were classified something else if they died as infants. Similar problems for adults were documented that weren't limited to mortality. Injury and cancer registries also misclassify many as non-Indians. Dr. Rhoades said cause-of-death statistics presented other problems. If one died from a recognized Indian problem (i.e., an alcohol-related disease or condition) there might be less misclassification. But if one died from cancer, another race classification might be assigned.
Dr. Rhoades noted there also seemed to be a high rate of AI/AN deaths attributed to signs, symptoms and ill defined conditions, as outlined in the ICD. A New Mexico study of these rates indicated this was a disproportionately leading cause of death: over 100 per 100,000. Dr. Rhoades remarked that undoubtedly those deaths involved heart disease and other uncaptured conditions. NCHS reported disparity rates for blacks of 18 or 19 percent in mortality in terms of dying from signs, symptoms and ill-defined causes, compared to about 11 percent for whites. Dr. Rhoades was unable to determine the rate for Indians.
Another misclassification study compared IHS's records to the National Death Index (where information from death certificates is collected). Some 11 percent of IHS patients weren't even captured in the index. Dr. Rhoades noted misclassification varied widely by region. The two most populous Indian states (California and Oklahoma) had the most misclassifications; Navajo areas had the lowest. She noted IHS is adjusting for misclassification in their report. She said the RIW Transitions Report identified well-recognized areas of health disparities: e.g., diabetes, unintentional injuries, suicides and violence, life expectancy, alcohol and substance abuse. Dr. Rhoades said she believed atherosclerotic heart disease was an under-recognized problem for Indians and asked about others. A minor problem for Indians in the early 20th Century, atherosclerotic heart disease was virtually absent in early studies. Though there were documented increases in diabetes mid-century, in the '80's people wondered what protected Native Americans against heart disease. She said that perception turned out to be a reflection of poor data. Heart disease had been the leading cause of death for Indian populations for years and mortality rates climbed, unlike rates for Caucasians. Last year saw a celebrated decline in mortality rates, the lowest in quite some time, yet in many communities heart disease mortality rates surpassed the U.S. rate. Comparatively speaking, Indians weren't dying from it at all in the '80's. A decline was recorded with rates from all races paralleling whites. There was a fairly flat rate for Indian populations. Dr. Rhoades noted, however, that IHS saw something quite different in looking at the adjustment for misclassification. Adjusted rates for misclassification approached 200 per 100,000 and were still rising. Potential for a large discrepancy was apparent.
Dr. Rhoades noted a marked geographic diversity in diseases. Once adjusted for racial miscoding, it became clear how much higher rates were. Especially large differences were seen comparing the Miji to the Albuquerque area. Dr. Rhoades pointed out that there were also differences in rates of misclassification per se by IHS service area.
Heart disease, which wasn't a leading cause of death in the general population until age 65, became the leading cause of death for Indians at age 45. When middle-aged American Indians were dying from heart disease in the past, people suspected alcoholic cardiomyopathy. While noting that alcoholism wasn't a problem to minimize, Dr. Rhoades said the mindset that Indian problems were alcohol-related could blind people to larger problems. The Strong Heart Study, a cohort study for AI/ANs aged 45 to 74 in three different communities specifically looked at heart disease and risk factors and found that AI/ANs tended to die of aschemic, not alcoholic, cardiomyopothy. Mortality rates among Indians and Caucasians had been higher in this age group for a long time, so this wasn't just an older AI/AN disease. One major disparity was lost years of potential life because people died at younger ages to injuries and violence. Life was also prematurely lost in middle age due to heart disease. Overall, mortality rates due to heart disease for elders 65, 70, or 85 years old were lower than the general population. In epidemiologic terms, this was called the survivor effect and was common in many, if not most, minority populations.
Population surveys in the National Data Source were relied upon to help identify determinants of disparities. Dr. Rhoades cautioned that tools that collect socioeconomic information and were valuable sources for U.S. national report cards didn't necessarily work in Indian populations. She said BRFSS, NHANES and NHIS were fantastic studies, though they rarely adequately sampled Indians and essentially were useless for AI/ANs. With BRFSS, people pooled data across years to get appropriate trends for Indians, but Dr. Rhoades noted this was a telephone survey and had a selected bias.
Dr. Rhoades reiterated that vital event data was disproportionately flawed for Indians and, in considering disparities in health, disparities in data also had to be addressed to get a clear picture. She cautioned that there might be more unrecognized disparities than anyone was aware of. National Health Surveys had grossly underrepresented AI/ANs. Some communities undertook their own health and nutrition surveys (e.g., the Navajo Health and Nutrition Examination Survey was a great source of information for the Navajo tribe, but not generalizable).
She reiterated that funding was a huge problem. No one wanted to fund a study that couldn't be generalized. To appropriate funds that generated area-specific data and had multi-center sites made funders shudder and had to be dealt with in other ways.
Dr. Rhoades expressed concern that effective interventions for disparities such as suicide and alcohol abuse were unknown. She said she knew what to advise to prevent diabetes and heart disease and how to help get rid of it. But she wasn't sure how to do this for suicide and alcohol abuse, which were huge and incredibly disproportionate problems for some AI/AN communities.
She recommended supporting national data networks that were both reservation- and urban-based and using compatible methodology. She noted this would be costly and take expertise and work but was needed to attack disparities head-on. Community networks or epi-centers already in place were wonderful and needed to be supported and expanded where possible. She acknowledged the initiative, drive and commitment of communities that were excited about this level of research, emphasizing that tribal entities had to govern what they wanted to look at. Supporting community priorities was number one and quite different than telling people they had a problem and had to fix it.
Discussion
Noting over-sampling was one way NCHS dealt with problems of small sample sizes and statistical insignificance for Hispanics and blacks, Dr. Newacheck asked if the panelists would support an over-sampling of AIANs in some of the bit surveys like the National Health Interview Survey, recognizing that there are issues related to geographic differences. Another way NCHS dealt with these problems was to do special surveys. Dr. Rhoades had mentioned one; the National Health and Nutrition Examination Survey did a Hispanic Health and Nutrition Examination Survey (HANES). Another survey on the Navajo population was mentioned. Dr. Newacheck asked whether it made sense to do any special surveys. Dr. Joe said she believed both recommendations would be helpful. The National Health Expenditure Study did an AIAN sub-sample study a few years ago and that set of data was valuable, but she emphasized that a key barrier to doing them more frequently was money. Dr. Rhoades agreed it would be helpful. A survey of AIANs was a companion to the National Medical Expenditure Survey in 1987. It consisted of three rounds of door-to-door, face-to-face interviews in a sample statistically representative of the IHS service population.
Dr. Rhoades said the sampling was a complex survey design that required special statistical methodology to use and allowed only 11 degrees of freedom. Dividing economic status into three categories, made three degrees of freedom, leaving only eight. That resulted in technical difficulties, but she felt it would be good if it could be done. One would need expertise in terms of the National Health Interview Study and elements that relied on urban populations.
Dr. Rhoades noted Hispanics and African Americans were more likely to live in Census tracts and so were relatively easy to over-sample. AI/ANs were more dispersed and finding an urban population denominator presented a challenge. Dr. Rhoades said she'd support such an effort but cautioned it would be expensive and convincing funders of the need would require considerable advocacy.
Ms. Fox mentioned the NIHB study on self-determination and self-governance, reviewed its costs and outcomes, and expressed surprise at how much the study covered. She said national study efforts were important and possible on small amounts of money, but advised they be done through area health boards working with entities like NIHB. Ms. Fox emphasized that support of tribal leadership was the key; it was essential that the tribes control the data. She said she believed there were tribes that would let certain study activities be conducted if their institutional review boards were partners. Such efforts were already underway researching diabetes and behavioral health, though Ms. Fox stressed she'd prefer to see more emphasis on behavioral health. She added that she'd also like to have an epi-center in each geographical area to develop data they already had.
Dr. Rhoades commented that sizeable patient-level data required surveying thousands of individuals. This could be a daunting task, especially if multiple sites were involved, calling for tribal or IHS IRB approvals. She pointed out that this difficulty, which might have limited efforts to over-sample Indian populations in large-scale studies, was even more of a barrier when seen as unrelated to community needs. Time consuming tribal involvement was required. She explained that tribes were starting to actively manage their own research, which meant developing their own tribal IRBs. Few tribes had much experience doing this and there was considerable start-up time and a learning curve. Some let the IHS IRB manage it, but individual researchers from a University had the University IRB and the Strong Heart Study indicated that, with multiple sites, there could be 20 IRBs. Dr. Rhoades pointed out that getting a paper published might take 13 separate tribal reviews; it could be two years before the paper could be submitted to a journal. One might work with 25 different time lines in getting approval for a study. Dr, Rhoades stressed cooperation and collaboration between tribes and consortiums. She noted the Northwest Portland area Indian Health Board might have its own IRB for all participants in the area. Northwest Portland area research came from its epi-center, which had been doing a lot of tribally driven work. Because it was tribally initiated, she didn't think they'd need tribal approval for projects.
Dr. Joe asserted that, as far as she knew, there was actually only one official tribal IRB: Navajo. Everybody else had a health committee. She explained that there were numerous layers that not only required approval from one's own institution (e.g., university or college) but each tribal community either had a health committee or tribal council that approved research. She estimated that over 90 percent usually requested that they see whatever would be published or sometimes even presented at an official or professional conference. Some people had been able to collaborate with tribes, used research issues they were mutually interested in, and worked collectively so the mechanism didn't take so long. She reiterated that many native people felt research had done them injustice. This way they were able to have input and demand that research benefit them. She felt the IRB process was the most appropriate way to express and meet those concerns.
Ms. Fox said the secret to the 1998 study's success was that tribal governments felt they were involved in the research design, not just the subject of a study. Mutual respect, consideration of views, and involvement at every stage of survey design enabled tribes to go ahead and participate. Even though some tribes weren't happy with some conclusions, they were confident that they were involved in the process and the development of the study effort.
An Internet user asked what new or innovative data collection methods the panelists would recommend to provide adequate numbers while still protecting confidentiality, given that major surveys don't adequately reflect AIAN data needs. Ms. Fox replied that native people wanted to feel that their information would be protected. Noting university-based institutions were often state managed and controlled, she pointed out the likelihood of suspicion unless tribal leaders represented their views on the Board of Directors.
In the early 1960s, research that collected blood and tissue samples created serious questions about the National Human Genome Research Project. Ms. Fox said people like her mother were troubled that vital, sacred information about Indian people was being probed from a clinical research perspective. There was already suspicion in the United States about cloning and genetic studies and how far the information had been split. Ms. Fox emphasized that giving tribal people control over what will be released is the essence of expanded survey data collection efforts.
Dr. Rhoades suggested that techniques for over-sampling enhance existing infrastructures within IHS and develop infrastructures between urban centers. Dr. Newacheck questioned whether Dr. Joe's reference to data sites in urban and rural areas related to having collection sites in different Indian communities where longitudinal data collection could be done. Dr. Joe replied that confidentiality, especially when talking about small sample size, was an overriding concern. She reiterated that, instead of identifying a specific Apache community, they'd say “Western Apache.” Another consideration looked at the support network for individuals with particular health problems, as well as ongoing tracking promising interventions in a community, instead of short-term studies that gave little information. Funding issues were noted again. Dr. Joe reflected that, while there was a lot of information about people dying, there wasn't much about people living.
Dr. Mays asked for ideas about how to increase participation of urban young people in research and about types of research likely to involve younger AI/ANs, particularly in urban areas. Dr. Joe explained that the peer-age pyramid reversed for AIANs; there were many younger people, but the National Health Agenda often was geared toward the older population. The AI/AN health report card routinely emphasized things that weren't comparable to what went on at the ground level. She emphasized that not enough was being done about the health status of young AI/ANs.
Dr. Joe pointed out that the younger male population, who were more likely to die in a car wreck or from substance abuse, was left out of the healthcare services stream. Women and children used these services more, which was why the demographic factor was important. Ms. Fox concurred. She noted an assessment in the late 1980s through the United States Senate that worked closely with the Office of Technology Assessment to do studies of adolescent mental health. The University of Minnesota studied perceptions of 14,000 AIAN young people about the use of alcohol, prevention, and their problems. Many people objected because they didn't feel it looked at issues relevant to Indian young people. Ms. Fox pointed out that AI/ANs supported their children and, if the focus was on solutions to their problems and future, people might look at issues they'd otherwise dismiss.
Dr. Huertin-Roberts asked if it was possible to build an infrastructure or research consortium of agencies and tribal groups that collect data to work on common, standardized, useful data collection and construct a research agenda and plan. Dr. Breen asked if NIHB didn't do that. Ms. Fox explained that NIHB provided for collective opinions, represented tribal views in terms of healthcare, conducted independent policy and research analysis funded by institutions, and participated in minority healthcare policy initiatives. Dr. Breen suggested that it might be possible to fund their consortium at a higher level in order to accomplish more of these tasks. Ms. Fox said about half of Indian Country could participate in that effort now as a consequence of NARCH and epi center grants, but without everybody being supported with epidemiologists it was hard to do that work. Ms. Huertin-Roberts clarified that she wasn't just thinking of an overseeing board but a consortium of groups actively conducting research in some organized systematic fashion with input from all tribal peoples.
Noting they'd heard that American Indians would welcome funding, staffing and technical assistance, but sought to control the agenda, Dr. Breen suggested that NHIB, which came out of the communities and was already trying to organize them into a body that could work together, could tackle the problem of many agendas and the IRBs. Covering 40 or 50 percent of Indian Country initially was a good start that could be expanded. The problems were huge, but it wouldn't be as expensive as dealing with a larger population. Dr. Joe agreed. NHIB was well aware of the need for collaboration and that each partner had his own mandate; the most difficult part was getting everyone to negotiate. She noted they were dependent on NCHS, IHS, and state data collection systems, but she added that those people understood the limitations of the data collection they provided and the need to give a little. Dr. Joe said Native communities expressed that they wanted input into what was asked so that the data would be useful. Mr. Johansson wondered if there were any successful models of collaboration between states and tribes and/or urban programs in data collection using standardized instruments such as BRFSS that had been modified to suit the tribe's needs.
Johnny Bear Cub Stiffarm said he'd been listening all morning and hadn't heard any references to tribal community colleges or institutions. Noting people there had access to local tribal communities and particularly American Indian youth, he asked about their role in research collection. Dr. Mays noted a similar question about recommendation to train more AIAN researchers. Tribal colleges and universities tended to be two-year programs. She asked for thoughts about establishing native-serving institutions similar to those serving Hispanics.
Asking everyone to look at her, Patty Iron Cloud from Oglala Cultivation (Pine Ridge) said the life expectancy for a woman at Pine Ridge was 56 years. She said she was 58 years old and thankful for living two years beyond that expectancy by God's intervention. Ms. Iron Cloud said her son was born in Los Angeles in 1969 and they put him down as white. She'd tried telling them he was American Indian, but she was told the only classifications were White, black and Asian. They said she couldn't take her baby home until she signed and she fought but couldn't get anywhere.
Dorothy DuPree, a member of the Acenabois and Sioux tribes in the Ft. Peck Reservation in Montana and the senior policy advisory on AIAN for the Centers for Medicare and Medicaid Services (CMS), agreed with Dr. Joe that there wasn't just one solution, but many different partners and that many weren't aware of what needed to be done. In September of 2000 HHS held a conference sponsored by HCFA and IHS about AIAN data. Ms. Dupree said a number of agencies within HHS, tribal leaders and organizations talked over a three-day period about difficulties of accessing data and came away with an agenda that got caught up in the turnover in Administration. She said it was important to get that agenda back on track.
Noting that CMS had no data on American Indians, Ms. Dupree said a primary reason was that the Office of Civil Rights only allowed IHS, not states to collect data and verify individuals were Indian and eligible for services. As they'd heard, IHS served less than half of all Native Americans and a vast base of information was missed. Every agency within CMS had to look within itself to see what it could do and even within agencies there was a split and a fear factor. Ms. Dupree added that as Indian people began to work for these agencies they helped them deal with that factor. As Dr. Joe said, Indians had an impact on how everyone worked with Indian data and it should be done at the local level, but many other partners were involved.
Ms. Dupree said another reason there was no Indian data for researchers was that when they paid for services they asked for the date, the service and individual, but not the services provided or health outcome. She said CMS had to work with tribes to determine whether it was more valuable to pay in another way that collected this data so when they keyed into a provider serving at a local level they knew exactly what those services were and could measure them.
Noting that with the revisions to the Office of Management and Budget's (OMB) Directive 15, by 2003 every data collection effort receiving federal funds would collect, at a minimum, OMB standards for race and ethnicity, Audrey Burwell asked if this would help in sharing information between tribes and the states.
Ms. Fox commented that IHS's RPMS collected some of this data but wasn't developed as a cost accounting data program and was problematic. One couldn't assess cost of care very well, but they were trying to make improvements for business purposes while also meeting GIPRA requirements. The problem was RPMS wasn't applied nationally and tribes used off-the-shelf systems. Responding to Mr. Stiffarm's question, she said she saw the tribal colleges as key partners in producing more AIAN health researchers. Ms. Fox said NIHB had done nine- and ten-state studies on the issue of Medicaid managed care and SCHIP programs, looking at best practices from tribal, urban and state perspectives in improving and enhancing Medicaid and managed care policies as well as data. While few partnerships had occurred in Indian Country, she said there were friendly state people that would be willing to be part of that effort, but again it depended on whether there was money.
Ms. Paisano concurred that research with AIANs was complex and said it was important that all federal agencies ask themselves what they did for research. It had been pointed out several times that IHS didn't have a research budget and was limited in what it could do: identification and sampling for AIANs was difficult. Many studies used different definitions of who was American Indian and different methodologies for collecting data. Telephone and direct mail interviews usually weren't as successful as face-to-face interviews, which also varied depending upon who asked the questions. And it took tribal or community participation for the effort to be successful.
Dr. Joe emphasized that community colleges were important and under appreciated vehicles in Native communities. She considered them a counterpart to historically black colleges and universities that were growing fast and an untapped resource. She suggested they provided a great opportunity to get young people interested in research; she noted a number of schools did this with minimal resources. Getting return on investment (ROI) or NIH grants required coming from a research university/institution, making it difficult for community colleges to compete. Dr. Joe advocated having another resource available as part of their educational agenda.
She noted that Johns Hopkins did a lot of work in the Southwest, bringing research expertise and had an office and lived in the community. The interdependency that developed out of that relationship made it a successful model. Because researchers were held accountable, they were required to make reports to the tribal council and got a feel about where research issues were within the community. Dr. Joe noted there had been successful models, including the one regarding the OMB mandate. It might be more confusing with two sets of books, but she hoped that would lead to the data desperately needed about people who lived off reservation.
Responding to the question about collaboration between states and tribal entities, Dr. Rhoades noted that Oklahoma BRFSS made an effort to be more representative of Indians in Oklahoma. The California Health Interview Survey (CHIS) over-sampled Indians who were underrepresented, even amongst Indian studies. The data set was expected to be available soon for analysis. Dr. Rhoades said Dr. Joe's comments about the tribal colleges were on target. Some NARCH initiatives actively included tribal colleges in developing a cadre of young, interested Indian researchers and part of their collaborations involved getting students from the tribal colleges to participate actively with research projects in the community. Dr. Rhoades said the last five years showed that they were developing successful models and the key was questions driven by the tribe.
Ms. Fox noted that the Assembly of First Nations working with Health Canada studied 150,000 indigenous Canadians, looking at everyday healthcare concerns and developing a general sense of priorities for their healthcare systems. Ms. Fox said NIHB found a lot of their approaches and methodology interesting and were building relationships with the Assembly of First Nations and the National Aboriginal Health Organization. She remarked that Secretary Thompson entered into an agreement with Canada to discuss what the Department might do to advance indigenous healthcare in North America. Ms. Fox said NIHB looked at this with interest because the per capita expenditure for Native Americans in Canada was about $3,800 per person and they wanted something comparable for Indian people in the U.S. There were means for bringing collective groups together that worked in other countries and, hopefully, Secretary Thompson's initiatives would help to develop that kind of relationship with federal research institutes in the United States.
Dr. Mays thanked all the presenters and participants, noting she hoped that the trust they had shown in sharing their data and personal information would enable the Subcommittee to find ways to be effective.
Urban/Rural Indian Issues
An enrolled member of the San Carlos Apache of Arizona, Ms. Russell described a situation she said was common in Indian Country today. She was born and raised on the reservation and left home and her entire family network to pursue higher education. Upon graduation, she attempted to return home but the job market had no place for her. NCUIH was the only membership organization representing 35 urban Indian health programs. NCUIH was founded in 1998 to accurately represent urban programs through advocacy and training. Its programs provided a wide range of healthcare and referral services in 41 cities to a population of approximately 332,000 urban Indians. The cities with the largest urban Indian population were 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. According to the 2000 Census, over half of American Indians lived in urban areas. Ms. Russell predicted that the 2010 Census would show that over 60 percent of them now live in urban areas. NCUIH programs were often the main source of healthcare and health information for these urban Indian communities.
Like their reservation counterparts, urban Indians historically suffered from poor health and substandard healthcare services. NCUIH strongly believed that the federal government's obligation to protect American Indians didn't stop at the reservation boundary. The urban Indian community developed as a result of misguided federal programs or actions (e.g., the Bureau of Indian Affairs' relocation program, which between 1953 and 1962 sent 160,000 Indians to cities. Today the children, grandchildren, and great grandchildren of these Indians were still in the cities and maintained their Indian identity even if, in some cases, they hadn't been able to reestablish ties including formal membership with their tribes. Ms. Russell emphasized that they deserved, morally and legally, support from the federal government in achieving the highest possible health status.
AIANs experienced significant disparities compared to whites for many health indicators. Rates for infant mortality among Native Americans were 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. Cancer mortality rates for American Indians increased between 1980 and 1997, while decreasing for whites. Disparities for diabetes were particularly striking with the prevalent rate among Indian people being three times higher than the rates for whites, non-Hispanics. One in three Native Americans was uninsured in 1990. More than a third of uninsured Native Americans reported having no regular source of medical care. The few empirical and population-based studies that exist suggested that health indices were similar for Indian people residing on or near reservations and those in urban areas. A study in the Journal of the American Medical Association analyzed births, deaths, and communicable diseases in one metropolitan and several rural counties in Washington state between 1981 and 1990. Compared with urban whites, urban Indians had higher rates of low-birth-weight infants, infant mortality, injury or alcohol-related deaths, tuberculosis and sexually transmitted diseases. Another article suggested that urban Indians experienced health risks later in life related to earlier years of living on the reservation. Many tribal nations were concerned about the exposure of environmental pollution (e.g., nuclear waste) associated with early development of breast carcinoma in women in their 30's or early 40's.
Several factors made identifying the urban Indian population and collection of accurate health status data difficult. The principal problem was the lack of a clear, uniform definition of urban Indians. Another factor that complicated monitoring of health indices was the dispersion of urban Indians throughout metropolitan areas. A further difficulty was the high residential mobility among urban Indians, especially low-income individuals and families.
Ms. Russell noted that in July of 2000 UIHI was established as a division within the Seattle Indian Health Board, a community health center targeting urban Indians and Alaska Natives. UIHI was designed with a national focus to provide leadership and health information to increase recognition of health status deficiencies affecting AIANs through a central point of focus for health surveillance, research and policy considerations. UIHI had three components. The UIIC was designed as a Web-based solution to gathering and storing information on the health of urban Indians. Performing the data gathering and tracking needed to meet the demand for demonstrating health disparities required a central repository for data collection and ongoing tracking, the cooperation of current and future IHS-funded urban Indian health programs and other information management institutes such as the U.S. Census Bureau, CDC, and local and state health departments. UIHI chose a web-based solution for cost efficiency and ease of operation.
UIEC was designed to study and analyze the data collected through UIIC 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 planned 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 third component was the Center for Tele-Health, Tele-Education and Advanced Communication. This center would focus on best practices using teleconferencing technology to improve communication and education alternatives. The center would assess the teleconferencing, telecommunication capabilities for each urban Indian health partner and determine costs and other variables for future development. Ms. Russell believed teleconferencing could become a cost-effective way for urban Indian healthcare programs to interact, share experiences, and reduce the cost of education and training for staff by reducing travel or out-of-office time.
NCUIH had lots of stories but little hard data on the health status of urban Indians. With the urban Indian line item of the overall IHS budget occupying roughly one percent, improving data collections was difficult. In addition, neither the IHS nor any other HHS agency currently collected and reported data in such a timely reliable fashion. Without that information it was extremely difficult to inform policy makers about healthcare issues concerning urban Indians.
NCUIH's recommendations were in agreement with that morning's comments about building and providing funds for expansion of current operations, such as the Epidemiology Center, and looking at partnerships that urban Indian health programs formed with state and local entities. Another recommendation called for looking at the eligibility of urban Indian health programs in competition for grants throughout the major agencies. Ms. Russell pointed out that urban Indian health programs weren't considered tribal organizations and so weren't eligible for many grants; expanding this eligibility to urban Indian health programs would be an incentive and initiate another outlet to collect data on the urban Indian health population.
Ms. Russell reiterated that dramatic changes had occurred in Indian Country over the last century, including the quiet migration of Indians from reservations to urban areas. The majority of AIANs lived in cities and policy makers at federal and state levels needed to understand that, in leaving their reservations, urban Indians didn't always escape conditions that made life so difficult including poverty, racism, inadequate education, alcoholism, drug dependence and teen pregnancy. These conditions were 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 to place urban Indians at great physical and emotional risk for health problems. American was nowhere near the lofty goal set by Congress in 1976 with the passage of the Indian Health Care Improvement Act of providing equal healthcare for American Indians, whether reservation or urban.
Responding to the struggle to reach American Indians in urban areas and the identification question, Mr. Russell advised that one of the best ways to reach out to the urban Indian population was through programs already in place that targeted them (e.g., New York City's American Indian Community House, a multi-service agency serving as a community center, which partnered with BRFSS).
Dr. Newacheck repeated the question he'd asked that morning's speakers. Based on the fact that it was difficult to document and understand disparities, given the small sample numbers in various national health surveys, would the panelists be supportive of over-sampling or expanding the samples of AIANs in national surveys and doing special-purpose surveys funded by the federal government. Ms. Russell replied that there was a great need for additional surveys processed that way with input from the Indian community. She noted that many of that morning's remarks could be attributed to surveys, including a recent issue brief on urban Indian health published by the Kaiser Family Foundation.
Dr. Mays followed-up on Ms. Huertin-Roberts comments, asking about panelists' willingness to be collaborative partners in bringing research efforts together. Ms. Russell noted that because the urban Indian health programs were so poorly funded and couldn't survive on IHS alone, they'd already forged partnerships with agencies and state and local entities as well as private resources for funding. She said the model was there and urban programs would be open to forming more collaborative efforts, especially in the area of data collection.
Noting they'd talked about problems doing research in tribal communities (mostly on reservations) and with urban Indians without cohesive communities, Ms. Huertin-Roberts asked who looked out for the rights of those people and would protect them against research abuses. Ms. Russell explained that urban Indian health programs had a support system within their own organization and board of directors as well as with the Urban Indian Health Program branch and the NCUIH. Dr. Rhoades noted that in order to access Seattle Indian Health Board's patient population one needed approval through the board, which was comprised of Native individuals. In this case, research protection fell to urban Indian health boards that were a surrogate for a tribal council.
Ms. Russell said priority areas for urban American Indians didn't differ much from those for tribal communities. Diabetes, cancer, HIV AIDS, mental health issues, alcohol and substance abuse were priorities. He concurred with Dr. Joe's report for the National Academy of Sciences that pointed out difficulties getting Medicaid coverage for American Indians in urban areas. NCUIH was working on better collaboration, but getting individuals eligible for Medicare and Medicaid services was still a problem the programs faced. Ms. Russell clarified that NIHB was comprised of more tribal governments and focused more on the tribal area, whereas the NCUIH consisted of urban Indian health programs and clinics across the country. They'd collaborated on specific issues in the past and continued a dialogue to realize how they could combine efforts to better serve the needs of the American Indian population.
Ms. Russell emphasized the need for an increase in funding for urban Indian health programs to accurately collect data. Funding for staff, training and licenses would be important as the urban Indian population increased. Increasing demand for services that tapped urban Indian health programs' staff, would become a major roadblock to collecting data in a timely, reliable fashion. Ms. Russell said a listing of membership programs and background on urban Indian health were available at www.ncuih.org.
Transitions Report
Fox discussed Transitions 2000, a Five Year Initiative to Restructure Indian Health (available on the IHS Web site) and it's implications in terms of collecting data on race and ethnicity for AIANs to serve in eliminating or reducing health disparities. She noted that this report, one of the most recent pieces published by the federal government about Indian healthcare, wasn't a final report but a draft of the IHS Restructuring Workgroup's recommendations. In 1994-1995, a group of IHS professionals and tribal and urban Indian leadership examined the design for the 40-year-old Indian Health Care System. In 2001 the structure was again reviewed to see how the system had changed because of information technology and what might be done to do a better job. The primary emphasis of the first report, produced at the advent of the National Health Care Reform Efforts, was to keep the patient first; Ms. Fox noted it seemed timely to create the Restructuring Workgroup. The workgroup included membership from the 12 areas of IHS. The tribes elected representatives along with the NCUIH, National Congress of American Indians, NIHB, and the Tribal Self-Governance Advisory Committee. Members met six times over the past year, preparing their report and, when the OMB and HHS decided to implement President Bush's one- department management initiatives to streamline and make government more effective, the restructuring workgroup was seen as an appropriate entity to look at how to do some of these consolidations. The President's Fiscal Year 2003 budget made it clear that some new departmental initiatives spoke to consolidating offices and moving certain programs into the Department, possibly causing the loss of at least 100 full-time employees and tens of millions of dollars to IHS. Tribes had been looking at ways to address new management recommendations of this new Administration.
Ms. Fox said the charge was to identify changes to the design of the Indian Health Care System and address recommendations. Some 40 recommendations submitted to IHS were reflected in Transitions 2000. The challenge in restructuring was to determine how operators of Indian Health Care could continue to provide services in a changing environment. Ms. Fox said for years people felt that disparities among AIANs were the most dramatic in American society and warranted new initiatives by and new resources from the federal government. People realized it was important to look at the IOM's analysis of where disparities occurred amongst AIANs, evaluate IHS's internal redesign requirements, and gauge the impact of HHS initiatives. The limited consultation between Secretary Thompson and the tribes had been a key concern because the Presidential Executive Order entitled consultation with tribal governments and required the federal government and its agencies to consult with tribes on the implementation of new policy and funding changes within IHS. The Executive Order recommended that consultation occur with each and every tribe, but Ms. Fox noted each entity was different in Indian Country and “what might work in Navajo might not work in Minnesota.” She said feedback about this report was being sought from each tribe, but until this month the Department had never asked each tribe's opinion about these restructuring initiatives.
Recommendations in the study effort included memorandums of agreement to improve communications and coordination. Ms. Fox noted that they'd talked that morning about what could be done to better consolidate or coordinate data collection activities, but rather than consolidate the IHS public and legislative affairs office, this was a specific budget recommendation. The study effort recommended against consolidation. Ms. Fox noted a feeling at IHS health facilities and sanitation construction programs that there was a need for stronger programs. She said she thought the budget proposal was to consolidate some programs due to the unique nature and mission of the agency and HHS and IHS human resources. Ms. Fox noted a proposal in the President's budget request to consolidate facilities construction as well as personnel and human resources. Consolidation of certain elements of IHS information technology systems was also recommended. The IHS ISAC had a plan for addressing technological needs for data collection while maintaining separate operating systems.
Ms. Fox said the Workgroup opposed much of the consolidation and many initiatives because budget authority would be removed from the agency and there'd be less control when staffing was lost. Because of the first Indian Health Design Team effort, IHS downsized 60 percent and money and resources were transferred to IHS field-based and tribal programs. Mostly this occurred because of the policy of self-determination and self-governance. The IHS budget was nationalized and the 558 tribes took some of those funds and had legislative authority to take administrative dollars out of area offices and headquarters and redirect them to the tribal level.
Under OMB's terminology, the focus was on outsourcing and contracting; a lot of the money and systems programs moved from headquarters to local field-based programs. Based on previous downsizing, NIHB believed that for now IHS and Tribal Systems should be exempt from further downsizing and the agency should be doubled to support the five-year vision of the Restructuring Workgroup. It should also be funded to complete one billion dollars in sanitation and health facilities construction. Other recommendations from the Restructuring Workgroup added funding to IHS from other HHS divisions. Specific recommendations already discussed spoke to increasing NIH's and CDC's role in additional research or other activities.
Ms. Fox clarified that Secretary consultation with tribal governments was essentially on One HHS initiatives. She noted the need for regional meetings or a forum for the tribes to talk collectively with the Secretary about these recommended changes. With 60 percent of headquarters' resources transferred to the local level, IHS had been downsized enough; Indian Country felt that IHS was a model for other federal agencies for streamlining and bringing program funding to the local grassroots level. When the Navajo Nation undertook some of its self-determination contracting this year, the number of FTE's diminished met the entire Department's allocation for 2002.
One HHS consolidation plans must address the uniqueness of IHS. IHS was the largest direct provider within HHS, with about 15,000 federal employees, 12,000-16,000 tribal FTE's, and a workforce of nearly 30,000 unique from other agencies of HHS. Ms. Fox said One DHHS concepts for Indian people held promise if other federal agencies within HHS assumed their responsibility for Indian healthcare. She said the question raised by tribal leadership was when would Secretary Thompson consult with them and HHS commit to reinvesting the savings from One DHHS plans to reduce disparities. The Restructuring Workgroup recommended that IHS funding be doubled on a per capita basis to bring resources for Indian people and Indian health in line with what was available to other Americans. Tribal and urban Indian organizations had to be assured grant eligibility to access and share healthcare resources. The number of healthcare providers in the Indian Health Care System must be doubled. Shortages of doctors, dentists, pharmacists, nurses and other healthcare providers in Indian Country must be eliminated through better recruitment, training and compensation. Aged, inadequate hospitals and ambulatory clinics must be replaced and modernized and space and equipment sufficiently expanded for a growing Indian population. And investments must be made in community infrastructure, especially for safe water and waste disposal, forms of municipal infrastructure that were virtually nonexistent in remote areas of Indian Country.
Tribes also spoke to the importance of traditional healing and successful initiatives looking at both chronic and preventative illness as well as behavioral health. IHS had been able to find ways with its extremely rationed healthcare system to still streamline and bring programs down to the local level. Ms. Fox said IHS believed that the federal government could learn from the IHS system and IHS could learn from other systems; she suggested promoting partnership.
Ms. Fox said her understanding was that the United States Senate and Interior Appropriations Committee adopted many of the report's recommendations and didn't necessarily buy into the President's budget to streamline or consolidate programs. But she expressed concern that, if the House and Senate couldn't reach agreement on the spending bill and there was a continuing resolution, OMB might move forward with some of these initiatives and strike, consolidate and streamline information technology--and less data would be available. Ms. Fox cautioned that, even though there might be new efficiencies, this could spell disaster for Indian Country.
Ms. Fox was hopeful Secretary Thompson would adopt the primary recommendation that at least a year was needed to consult about these options. She reported that many programs were being regionalized, but they were a long way from tribal endorsement. One individual representing 41 tribes, as the chair, Julia Davis, did, couldn't go back and convince each tribal government to adopt the report. Everyone met collectively on a quarterly basis but people were supposed to respond within 30 days, which Ms Fox said seemed unreasonable, particularly in an election year. Native people were participating and trying to figure out how to stave off implementation until they could consult about these issues.
Asked about the notion of One Voice and how it worked relative to data collection and data issues, Ms. Fox explained that on common issues tribal government's believed in (e.g., addressing health disparities) they should work together with a singular voice. She said the Executive Order recognized each tribal government. President Clinton met with the tribal chairman of each tribe on that remarkable day back in 1994 and the Office of Domestic Policy Council for the White House realized that there needed to be a process for the Administration and Department to meet with tribes about any issue and they created One Voice. Secretary Shalaha and Secretary Thompson both took the Executive Order seriously. HHS was probably the only agency out of 13 Cabinets that had conducted annual budget consultations for about six years with IHS. When President Bush came into office, the National Governor's Association challenged One Voice, but the President reaffirmed this Executive Order based on the idea of government-to-government consultations. As tribal governments, each was entitled to an opinion but if they spoke together for common issues that affected all their people that should be done with the President of the United States and the Secretary of the Departments. Ms. Fox said NIHB saw the Committee as a means for doing that and hoped the tribes would see the Committee's recommendations to the Secretary and ensure that they were speaking with One Voice on the common issues that developed.
Ms. Fox said NIHB believed the country was obligated to talk to them on a government-to -government basis. She noted what Sally Smith, who represented 228 Alaska Native villages that covered a wide range of cultures and sovereign beliefs throughout the state and was passionate about Alaska Native issues, would have conveyed that day: In the early 1970's, about 80 Alaska Natives developed cancer each year. In 1998, 269 Alaska Native patients (116 men, 153 women) were newly diagnosed with invasive cancer. Based on the data for 1994-1998, 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, and breast and were the same in all eight major service units, although rank order varied. Mt. Edgecomb, where the third leading cause of prostate cancer slightly exceeded lung cancer, was the one exception.
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. For the most part, the same three cancers were also the leading causes for all Alaska Natives in each major service unit, though they, too, occasionally varied in rank order. Exceptions included stomach cancer, which ranked among the top three cancers in men in Barrow and Norton Sound service areas. Kidney cancer ranked third in the Yukon delta. (Small differences in the numbers of cancers could change the rank order.)
The average annual age-of-death incidence rate for all cancers combined was 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 age- adjusted incidence rates for all cancers were similar for Alaska Natives and U.S. whites, rates for specific cancer sites differed. The lung cancer rate in Alaska Natives exceeds the U.S. rate among both men and women by nearly two-fold. Rates among Alaska Natives were also higher for cancers for the oral cavity, especially sites in the digestive tract and kidneys.
Breast cancer among Alaska Native women increased and was at least as high as that of U.S. white women. Prostate cancer continued to occur less than half as often in Alaska Native men than in U.S. whites. Rates among Alaska Natives were 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, occurred at a rate similar to that for U.S. white women. Information could 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 provided details on occurrence of cancer by gender and age for all cancers combined and by specific cancer sites for all Alaska Natives and eight major service delivery areas. These data were also available on the Alaska Native Web site (www.anhb.org/sub/epi).
Some of the cancer rates in 1994 combined to 1998 and indicated that they were age adjusted and could be compared directly for Alaska Natives. Others were for all sites and all cancers combined. The Alaska Native rate was 425 per 100,000 compared to the U.S. white rate (395 per 100,000; an odds ratio of 1-to-1. Noting this was exactly what Dr. Joe suggested, Ms. Fox recommended doing comparisons of specific sub-populations. They knew 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: a 1-to-1 odds ratio which was comparable. The vast difference in cancers in comparison to U.S. white for all major Alaska areas was behavior oriented. For instance, Alaska Native lung cancer rate was 90 per 100,000 while U.S. white rates were 53.9: 1-to-9 or almost twice the odds ratio. Alaska Native smokers were 43 percent of those sampled in the behavioral risk factor surveillance system; non-Native smokers in Alaska were 23 percent, while the U.S. rate in general was 25 percent.
Alaska Native oral cavity rate was 17.3 per 100,000 while U.S. white ratio was 95 per 100,000, which again was almost twice as high: a 1-to-9 odds ratio. In the Alaska Native population, 15 percent of Alaska Native men used smokeless tobacco and ten percent of the women. The non-Native Alaska men averaged seven percent while zero non-Native women used smokeless tobacco. A lot of American Indian women did that. Digestive cancer among Alaska Natives was 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 had a rate of 6.7 among Alaska Natives comparing to a 2.9 rate among U.S. whites; this was 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. Men reported 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. Alaska Natives ages 18 to 34 and ages 35 to 49 had notably higher rates, especially in Anchorage and Fairbanks. The rest of Alaska was primarily rural with high use of traditional subsistence foods.
Since the 1950's, health status had improved among both Alaska Natives and non-Natives. But the most dramatic improvements had been among Alaska Natives. Infectious disease was no longer a major cause of death among Alaska Natives. Life expectancy at birth had increased 22 years among Alaska Natives and ten years among non-Natives. Infant mortality 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 were found between rural and urban Alaskans, both poor and the more affluent, between males and females, and among racial and ethnic groups. The Alaska infant mortality rate fell during the 1990's by 30 percent. A similar decline occurred nationally, both in the neo-natal mortality rate and in the post neo-natal neo-natal mortality rate. The infant mortality rate among Alaska Natives declined by 36 percent but remains higher than the overall Alaska rate. 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.
Ms. Fox reflected that Alaska Native Health Board was fortunate that they were in an area that had an epidemiology center and a cancer specialist. They'd been able to collect this data for less than three years and they'd done an amazing job. ANHB highly recommended that every area have similar access.
Noting that in almost all the presentations the testifiers gave cancer data, Dr. Mays said perhaps the model they were searching for was right there in the room. She asked what barriers had been broken or resources provided that enabled them to present that information. Ms. Fox noted that two American Indians now were oncologists and six more were in training. NCI had a cancer research network that was breaking the tide and IOM's study on the incidence of cancer raised awareness that there wasn't enough funding. But Ms. Fox said the reason Alaska had such good cancer data was that Anne Lanier was the epidemiologist out there doing this work. She said it boiled down to a few personalities who'd figured out how to turn the tide and get funded.
Discussion
Dr. Joe noted a number of things contributed to the improved data set. SEER data collection expanded across the country. NCI funded the tumor registry in Alaska. The Cherokee Nation in Oklahoma got funding from NCI to set up a cancer registry. CDC funded registries had all been responsible for improving the data. Dr. Joe said two IHS supported reports on cancer in AIANs pulled it together, but the data source primarily was mortality data. She noted the incidence data and information on survival still left much to be desired.
Dr. Rhoades agreed that the force of the personalities in Alaska helped push the data there. At one point the New Mexico Tumor Registry was the only one with any Indian data and those weren't generalizable. But NCI funded six-to-ten centers of a multi-institute cohort study in that they would follow healthy young adults longitudinally over time. Dr. Mays asked if could be replicated with heart disease or HIV AIDS. Dr. Rhoades said the study was conceived after the success of the three-site Strong Heart Study that involved 4,500 adults. It had been expanded into a cohort study for cancer and they would also look at cardiovascular disease. Initially diet was the risk factor for cancer. There was discussion about adding EKGs as another risk factor. Dr. Mays said the problem was everyone wanted their piece and, divided too many ways, it might not retain good data anywhere. She said part of that research group's charge was to keep focused and build outward.
Dr. Mays asked if a specialized NHANES administered to AIANs would work. Dr. Rhoades said theoretically it could, but she cautioned that in a practical world it took a lot of commitment by many people because it was such a problem for the data collection agencies. Dr. Breen agreed that it boiled down to personalities and commitment. Ms. Huertin-Roberts concurred, adding that NCI had a particular commitment to population health sciences and was willing to put money into efforts to understand health in populations. Dr. Breen emphasized that training was important to ensure that researchers were available in the communities where the data was gathered. There was a back-and-forth between data collectors and analysts and a continual process of data improvement.
Ms. Fox pointed out that when the Balanced Budget Act was passed in 1997 $30 million dollars was set aside for five years in a $150-million-dollar effort to grant funding to the tribes for diabetes prevention and treatment. The Tribal Leader Diabetes Committee, an advisory group of tribal leaders from each IHS area, provided guidance on how monies should be dispersed and what they should do in terms of their data efforts and building advocacy for diabetes. After three years, funding increased from $30 million to $100 million. Now there were efforts to make that funding permanent for ten years at a level of $200 million. The Juvenile Diabetes Foundation and American Diabetes Association met quarterly (and more often when funding allocations pressed) and had meetings with National Institute for Digestive Diseases, Diabetes and Kidney Disorders, and NIDDK and worked to realize an effort to build the data to enhance incidence and morbidity information.
What Ms. Fox liked most about that model was that, as more and more tribes understood challenges related to diabetes including the need for data, they'd increased in five years what had been limited money to at least $100 million dollars each year in research efforts and prevention. What was problematic about a cancer network was that it was narrowly construed within the Office of Minority Health, within NCI. Ms. Fox contended there probably needed to be other dimensions of NCI that bore responsibility for AI/AN research and predicted that if the network was funded to meet four times a year they'd see a doubling or tripling of that effort. Ms. Fox noted funding for that tribal leader advisory committee was slight and limiting compared to what the outcomes could mean. She reported that NIHB had discussions with the former director of NCI about supporting and authorizing a tribal leader committee on cancer and was considering efforts directed at heart disease and diabetes.
Remarking that the Restructuring Initiative Workgroup should be applauded for developing population specific special emphasis disparities that focused on disease conditions that most affected AIANs, Dr. Mays asked about the thinking that went into identifying life expectancy as a special interest disparity. Dr. Joe replied that life expectancy was a typical concern that everyone strived for, because it was a good indicator that people were getting healthcare. Statistics from IHS comparing the life expectancy of AIANs with the general population/all races indicated a great need. She recalled Ms. Iron Cloud told them that life expectancy for a woman on Pine Ridge Reservation was 56. Life expectancy in some communities was far below the general population. With one statistical measurement for everybody, this reality got lost. Dr. Joe said she didn't think anyone ever considered not including life expectancy. It came naturally.
Tribal Self-Governance
Recognizing that in assuming management of their health operations a lot of money and programs were contracted for by tribes and that, in the process, data quality and collection systems were compromised, NIHB established a workgroup to look at information systems within IHS. Mr. Roberts explained IHS used a RPMS to collect information. A number of different components (e.g., pharmaceutical, billing, and scheduling) allowed a facility to track its data. When tribes took over management of their operations three-to-five years ago, the RPMS system was antiquated and a lot of tribes turned to off-the-shelf computer systems COTS. The dilemma during the IHS budget process was that ability to aggregate data was lost because much of the data necessary to make the annual case for an increase in the budget wasn't making its way to IHS. So few dollars remained within IHS that issues of data quality, misclassification or miscoding were no longer priorities. The primary focus was on tribal health facilities in looking at issues and how to use dollars for basic day-to-day issues.
ISAC prioritized spending within IHS. Priorities were revenue generation, connectivity to COTS, training and staffing, technical support, high-speed connectivity, patient records, and data quality. Data quality included billing interoperativeability, meaning user interfaces between COTS and the RPMS system so data could be aggregated and centralized, allowing for a case to be made for increases during the budget process.
IHS intended to invest in information systems that enabled improvement in patient care and third-party collections. The rationale regarding third-party collections was that, as third-party collections improved, more funds would be generated to expand services to people. Day-to-day needs included training, IT leadership, and telecom infrastructure. Many clinics and hospitals still dialed up with 56K to download information to area offices where it could be aggregated. Effort went into the government computer-based record system. And money was going into developing system firewalls at the area, headquarters and field levels. The ROI rationale was that increased collections would allow expanded focus. Data quality, although addressed, was a cost-avoidance issue and less significant. The quality of data affected everything from patient care, third-party revenue, GIPRA, and Congressional reporting requirements. ISAC recommendations for improving data quality included establishment of a national data center at NPIRS; a form data processing procedure for area offices; training of clinical and data entry personnel; and development and implement assessment intervention tools, software, methods and best practices.
Dr. Mays said some participants had heard about the National Health Information Infrastructure Committee looking at these issues. Noting a relationship between health disparities and health information, she emphasized it was important for people in health disparities to make this linkage because researchers wanted standardized measures and, as Mr. Roberts indicated, they were still working to get the infrastructure needed in order to get quality data. Part of why they didn't have the quality of data needed had nothing to do with mistrust, distrust and negotiations, but with funding necessary infrastructure and understanding how that infrastructure might be similar or different. Mr. Roberts noted that one of ISAC's concerns was that with the necessary data systems, disparities would be substantiated and might be seen as even more alarming.
Discussion
Dr. Mays asked Mr. Roberts if he thought the code sets used for care delivery billing were adequate for the task and if they could capture what was done in a traditional healing setting. Mr. Roberts said that question was probably better posed to a clinician or a physician that worked in the facility that used the software. Dr. Rhoades noted that the Association of American Indian Physicians was making a concerted effort to increase third-party billings. They worked with two data systems, RPMS and a billing system, and were “pulling their hair out” to get basic day-to-day billing components filled out. While reliance on some of these administrative data sets theoretically sounded good, Dr. Rhoades cautioned that practical implementation frustrated those on the front lines.
Mr. Roberts added that often IHS facilities ran two or three software applications to capture necessary information. They might run RPMS for client intake, registration, and scheduling, but for pharmaceuticals they might run HealthPro. Third party reimbursement could require another software. The biggest system challenge was developing interfaces. Ms. Paisano commented that the Division of Statistics, which published trends and regional differences, also worked with NPIRS data. She reiterated the difficulties of getting data from multiple COTS into the RPMS system and NPRIS, saying she believed there had been success along with challenges. Ms. Paisano reported that patient care data that came into the system had improved over the last few years. But as they'd already said, it came down to money for systems and staff.
Ms. Fox remarked that Dr. Mays had asked a question that spoke to her of cultural competence--like a coding for traditional medicine approaches. Ms. Fox suggested Dr. Joe could elaborate on it more and mentioned a federal meeting recently in Arizona and a discussion about whether traditional healing practices should be federally funded. Ms. Fox opined that was a matter for each individual Indian and his or her family. She recalled a t-shirt that declared, “I'm a Sovereign Indian.” She said that sounded neat, but meant they were tribal and believed in their sovereignty. They were sovereign and responsible as individuals, but because of much research in the past there had been an effort to protect the intellectual property of Native people. Still, in an everyday tribal setting, not many Indian people would go to an IHS or even a tribally funded doctor or nurse to talk about traditional healing. In the past it had been dismissed and information about traditional healing wasn't often shared with clinicians. Ms. Fox said she didn't think they were at the point where traditional healing practices would be incorporated into a patient classification or diagnostic system. She said she'd appreciate a DSM 4 or 5 that was Indian specific, but that she didn't know that they'd reached that point in the behavioral arena for classifying behavioral health disorders. Traditional healing was viewed as sacred and Indians who felt sovereign weren't necessarily going to share it with the general public. Still, Ms. Fox emphasized the need for culturally competent patient classification.
Ms. Burwell announced that there would soon be a meeting on traditional healing in Baltimore. Specifics would be posted on the Office of Minority Health Resource Center's Web site, www.omhrc.gov. Dr. Rhoades reported that reimbursements were made for small demonstration projects involving traditional healing practices (e.g., substance abuse counseling, detox centers). CMS would look into alternative medicine and sites for demonstration projects. Dr. Rhoades assumed they were looking into some day reimbursing alternative medicine.
Dr. Joe remarked that some tribal communities with a large number of employed people negotiated to include payment for services of traditional healers as part of their insurance coverage. She noted there already was a precedent. A provision in the Rehabilitation Act allowed Native American rehabilitation clients to request and receive additional money and support for traditional healing. She noted a conference in Scottsdale approached this issue just over a year ago with the discussion between CMS and the state institution and there'd been considerable controversy. Many traditional healers felt getting certified or on a registry would be an additional burden. Sometimes the attitude was patients should take responsibility, and if they didn't have enough resources apply for assistance. The discussion hadn't gotten into the ins-and-outs of specific traditional healing or methods. Dr. Joe noted that, for a long time, IHS had had traditional healer consultants or employees working with clients in the mental health program.
Dr. Joe suggested the difficulty was that traditional healers hadn't been given enough support to help them document the service they delivered without infringing on intellectual property rights. Some measurement (e.g., patient report) was needed indicating they felt better. Dr. Mays inquired if she was recommending evaluation or demonstration projects in the area of traditional healing. Dr. Joe clarified that she was initiating a dialogue, not a recommendation. But she said she found that, in many cases, the cost of traditional ceremonies had become expensive and some families didn't have the resources. The Navajo tribe dealt with three states and instigated this discussion, wanting to take over CMS activities for a particular reservation and include coverage for traditional healing. Dr. Joe emphasized the need to construct a way to talk about traditional healing as part of the health delivery system.
Ms. Iron Cloud told two stories about traditional healing, to make traditional healing more real for others. Her son had ear infections before he was two years old and she took him to IHS in Rapid City. The pediatrician was Japanese and they barely understood each other. He told her that her son had a broken ear drum and that it was serious. He gave them medicine and said to come back in ten days. Back home, she took her son to a traditional ceremony. Ms. Iron Cloud said she knew her son was healed, but continued with the medicine and returned to the pediatrician in ten days. He said he couldn't believe it; her son didn't have the expected scar tissue. Ms. Iron Cloud reiterated what Ms. Fox said: such healing is sacred, and “you don't talk about it.” She wasn't going to try to explain to this man that she could barely understand--And knew she wouldn't have, even if he could.
Ms. Iron Cloud said sharing details of the other moment she had to tell about in order to help others understand traditional healing was too sacred for her to say much. When her son was eight years old, he was diagnosed with leukemia. It took a long time and many tests at the Pine Ridge IHS to get this diagnosis. Finally they did and referred him to Children's Hospital in Denver. They were to leave on Tuesday to get there on time for a Thursday appointment. On Monday, they went through a ceremony and she knew when they went to Denver that he wouldn't have leukemia. And he didn't. He's now 20 years old.
Disparities in Hospital Rates of American Indians in Rural California
Ms. Fox explained that Jim Crouch, a Cherokee Native and executive director of CRIHB was responsible for the successful receipt of several small discretionary grants. He was involved with a number of study efforts, working with CE and Kellogg Foundation. Ms. Fox noted one CRIHS project would probably become a model for managed care for all of Indian Country on issues related to Medicaid and Medicare improvements in financing. Mr. Crouch was co-author of Disparities in Hospital Rates of American Indians in Rural California, which looked at disparities in hospitalizations and avoidable hospitalization rates. Ms. Fox said she was pleased that CE recognized Mr. Crouch for his contributions to the improvement of healthcare, particularly for American Indians.
Ms. Fox noted two grants were received by NIHB from CE, mostly to advance advocacy and provide training and technical assistance for Indians, principally in California. One grant project's goal was to increase the IHS budget by a billion dollars.
Ms. Fox explained that California probably had about 110 tribes in residence; less than 50 had federal recognition. During the gold rush, frontiersmen seized Indian lands and decimated some tribes. Many struggled to survive and some displaced tribes in Southern California had done well with their gaming activities. Today, many California Natives didn't have full federal recognition. CRIHB was based in Northern California and represented interests of 32 tribes, working collectively in a consortium to provide healthcare. One problem was that no hospital was Indian-run or controlled by IHS or the tribes. CE supported a study effort looking at hospitalization and avoidable hospitalization rates of rural California Indians. CE encouraged the Subcommittee to use 1996 files of IHS contract service users in the rural tribal Indian health programs in looking at issues of racial misclassification. CE looked at those files linked with state files and hospital discharges, hoping to determine disparities and compared these rural Indians' avoidable hospitalization rates with those of various state and national reference populations. Hospitalization rates among rural California Indians in 1996 were higher than national rates for American Indians reported by IHS and the U.S. population as a whole. Age-adjusted rates were 30 percent higher: 127 hospitalizations per 1000 people when compared to the California population as a whole. Hospitalization rates of the rural California Indians were higher than those for white non-Hispanics, white-Hispanics, Asian Americans or Native Americans and comparable to African Americans in the state when age adjusted.
Substantial racial misclassifications of the hospitalizations of California American Indians were noted in state hospital discharge databases. Hospitalization rates of the rural California Indians identified through linkage with IHS records were 2.7 times higher than Native Americans on the hospital discharge records. Native American hospitalization rates were actually lower than those of other major racial groups in California, indicating that many American Indians were misclassified. Ms. Fox noted 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 led to gross underestimates of the disparities in health of American Indians in California.
The five largest disparities in hospitalization rates for rural California Indians under age 65 compared to same-age groups of Californians as a whole were for males: injuries, a difference of 20 hospitalizations per 10,000 people; respiratory diseases and conditions, 13; skin diseases, 11; alcohol dependence, 8; and diabetes, 7. For females there were digestive diseases at 21; genitourinary, 20; respiratory diseases, 16; mental disorders, 13; and pregnancy complications, 12. Avoidable hospitalizations when diagnoses were restricted to 12 conditions expert panels defined as avoidable hospitalizations with access and use of effective ambulatory care, the adjusted rates among rural California Indians of 129 per 10,000 were 30 percent higher than those for other Californians at 99 per 10,000 people. Avoidable hospitalization rates for rural California Indians were higher than those of white, non-white, white Hispanics, Asian Americans or Native Americans and comparable to those of African Americans. Rates for rural California Indians classified as Native Americans on the state hospital discharge database were 3 times higher among men and 2.6 higher among women.
Ms. Fox summarized that the report provided evidence that officially-recognized California area Indians eligible for rural contract services of IHS had higher levels of hospital healthcare needs than other California groups and that those needs were 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 therefore underestimates their healthcare needs substantially. Though disparities in some hospitalizations rates were small or based on small numbers, Ms. Fox said they should be interpreted with caution until statistical analysis was completed. The presence of disparities over a wide range of ages for men and women supported the general conclusion that additional health resources, especially resources that improve availability, use, and quality of ambulatory care, were needed in IHS's rural contract health service delivery area in California.
Ms. Fox said California was a perfect example of how history, time and the law affected the availability of appropriations. California Natives, under the policy for self-determination, exercised their legal rights and challenged IHS about the availability of resources and demonstrated that they didn't have equitable resources to address their needs and realized cross- cutting research in areas of tobacco and managed care. They were still doing the best they could to highlight disparities California Natives experience. According to statistics, California was the largest populated state in terms of AIANs and a good place to begin new research initiatives. Ms. Fox said CE supported these efforts and would appreciate additional resource support from federal agencies beyond IHS.
Discussion
Dr. Rhoades noted that this study was an example of the state and CRIHB cooperating to get data and that was also in the state's interest because IHS reported hospitalization rates and California had the lowest. The numbers reflected in IHS were contract dollars, the hospitalizations IHS partially paid for. The state paid for hospitalizations of indigents. She said a lot of communities corrected misclassification and disparities by partnering their data sets. Linking was key to resource allocations and more studies would come from it. Dr. Mays agreed that the state of California was quite interested for lots of reasons, some selfish, some not. She noted Dr. Rhoades hit upon one of the critical things: partnerships. Sometimes partnerships came out of passion, dedication and commitment. Other times they came out of a sense of efficiency of funds and determining whether costs could be allocated differently. Dr. Mays said what mattered was that they saw the good that came out of this.
Dr. May noted another theme heard strongly was people determining their own destiny as cooperative partners with the ability to be the ones asking questions and having a sense of direction in partnership with others and their expertise. Reading the meeting's packet drove home the extent of the disparity and the question loomed even larger about whether there was the type of data collection that would enable determining the extent of health disparities and how to move ahead doing interventions and preventions. A number of presentations helped to understand the complexity of moving to that point. From what they'd heard so far, Dr. Mays said she didn't know if they were far beyond the collection of incidence and prevalence. They'd heard there were best practices and great partnerships, but she suggested that it also would be useful to get a sense of where this community was in having the foundation, partnerships and science to move as rapidly in terms of intervention and prevention. Some of that came from resources, diversity, and having identified advocates in place. Dr. Mays emphasized that the Subcommittee's role wasn't as advocates but as facilitators of change
Noting she was sensitive to when people gave their time, thinking the Committee would make a big difference, Dr. Mays said they would make as much difference as they could. Sometimes one didn't see that rapidly. The Committee might send a letter to the Secretary, yet it would be an institute that stepped in and did some of the work. Making recommendations, the Committee tried to work on many levels. All those at the table came from a variety of places where they would reflect on what they'd heard today and strategize responses that they hoped would facilitate change.
Dr. Mays noted they'd started off with technology issues, getting formal letters on sufficient letterhead rather than e-mail slowed them down, and she'd learned that access difficulties dwindled their number. She said the Committee was sorry that happened and, had they known in advance, would have done differently. Ms. Fox responded that Ms. Davis appreciated those letters because she couldn't access her e-mail sometimes for a week and written clarification helped convince her tribal council, who didn't necessarily have e-mail, that she had an important meeting to attend. Ms. Davis had been able to be here briefly, but she always liked data and would probably use these studies in building her strongest testimony before the Congress. Ms. Davis sought to have a meeting of tribal leadership with the President and was also seeking a meeting with the Secretary. They'd seen him over a videoconference, but he had yet to hold an official meeting with all the tribes. Ms. Fox said she understood that the Subcommittee might not have all of the answers, but she appreciated that they had shown respect, listened and taken time to hear their concerns. She said she knew that, when she stood in for people, she sometimes came across strongly and she emphasized that she didn't mean to offend or upset. But Indian Country faced a lot of challenges they felt that anybody who would listen would help find the answers.
Dr. Mays thanked Ms. Fox and said she wasn't alone. Dr. Mays said her own humility brought her to her knees on this technology issue. She'd heard from others that some people couldn't open Subcommittee e-mails. She was happy that so many had tolerated and forgiven the Subcommittee for using technology as its primary mode and thankful they'd learned their lesson and picked up the telephone. Dr. Mays said she appreciated their sharing these challenges. She said the strength with which they'd shared them would drive the Committee to think carefully about how they could respond to what was shared. Dr. Mays adjourned the hearing at 3:48 p.m.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/S/ July 25, 2003______________