Best Practices in American Indian & Alaska Native Public Health A Report from the Tribal Epidemiology Centers 2013 00||| PP aa ggee 1 | P a ge Contents EXECUTIVE SUMMARY ....................................................................................................... 4 INTRODUCTION .................................................................................................................. 8 Indian Country and Indian Health .............................................................................. 9 Tribal Epidemiology Centers .................................................................................. 12 About This Report – Statement of the Problem .......................................................... 16 OVERVIEW OF TRIBAL EPIDEMIOLOGY CENTERS ......................................................... 18 Data Challenges and Strategies ................................................................................ 124 Issue 1: Data Access ................................................................................................. 124 Issue 2: Framework and Measures used to Record Race and Ethnicity. .......... 126 Issue 3: Racial Misclassification................................................................................ 128 Issue 4: Small Population Size ................................................................................... 131 Issue 5: Other Data Quality Considerations .......................................................... 132 BEST PRACTICE EXAMPLES OF TEC WORK ON KEY HEALTH TOPICS ........................ 138 Adolescent Health: Southwest Tribal Youth Project ............................................ 140 Adolescent Health: Risk and Protective Factors for Tobacco Use ................... 143 Behavioral Health: Suicide Data Tracking Project ............................................... 145 Behavioral Health: Mental Health and Wellness .................................................. 147 Behavioral Health: Tobacco Wisconsin Native Youth Tobacco Survey ........... 149 Chronic Disease: Asthma Tribal Asthma Survey Project ...................................... 151 Chronic Disease: Cancer Among the Navajo: 1995 - 2004 ............................... 153 Chronic Disease: Cancer Misclassification Oklahoma ....................................... 155 Chronic Disease: Diabetes Annual USET Diabetes Report .................................. 157 Chronic Disease: Obesity – Ojibwe SHIP survey .................................................... 159 Chronic Disease: Obesity Prevention –Child Health Measures Project ............ 161 Immunization USET Immunization Program ............................................................ 164 Sexually Transmitted Diseases Viral Hepatitis and STI Prevention ..................... 166 Injury: IDEA-NW Project and Injury Prevention ..................................................... 167 Maternal and Child Health: Alaska Native MCH ................................................ 169 Maternal and Child Health: WIC and MCH Profile ............................................. 172 2 | P a ge Maternal and Child Health: South Dakota PRAMS Surveillance ...................... 174 Vital Statistics: Community Health Profile (CHP): Aggregate of Urban Indian Health .......................................................................................................................... 176 Vital Statistics: ITCA Community Health Profiles ................................................... 178 Concluding Summary ............................................................................................... 184 References: ................................................................................................................ 186 GLOSSARY OF TERMS ................................................................................................ 188 3 | P a ge EXECUTIVE SUMMARY The Tribal Epidemiology Centers, funded in part by the Indian Health Service and National Institutes for Health, are twelve unique centers serving American Indian and Alaska Native people throughout the United States. Our mission is to improve the health status of American Indians and Alaska Natives by identification and understanding of health risks and inequities, strengthening public health capacity, and assisting in disease prevention and control. We envision our group to be a strong, interwoven group of centers working together to develop a National Tribal Epidemiology Center narrative; enhanced data access and stewardship; respected multi-directional public health collaborations; and a diverse sustainable funding base. We work together for the betterment of the health of American Indian and Alaska Native people living in a variety of settings in the United States. This report represents a collaborative effort of the Tribal Epidemiology Centers and is the first such report. We are keenly aware of the data quality questions it raises, but hope by presenting this information; we are able to highlight the successes of various Tribal Epidemiology Centers across the nation. We face many challenges on a daily basis in the areas of data availability and quality, but woven together we present a strong story. The TECs have broad work-plans based on constituent identified needs, both tribal and urban in focus. However, we are charged with a common work-plan across the nation. Tribal Epidemiology Center functions have been outlined in Patient Protection and Affordable Care Act, Indian Health Care Improvement Act as follows: “In consultation with and on the request of Indian tribes, tribal organizations, and urban Indian organizations, each service area epidemiology center established under this section shall, with respect to the applicable service area— 4 | P a ge (1) Collect data relating to, and monitor progress made toward meeting, each of the health status objectives of the service, the Indian tribes, tribal organizations, and urban Indian organizations in the service area; (2) evaluate existing delivery systems, data systems, and other systems that impact the improvement of Indian health; (3) assist Indian tribes, tribal organizations, and urban Indian organizations in identifying highest-priority health status objectives and the services needed to achieve those objectives, based on epidemiological data; (4) make recommendations for the targeting of services needed by the populations served; (5) make recommendations to improve health care delivery systems for Indians and urban Indians; (6) provide requested technical assistance to Indian tribes, tribal organizations, and urban Indian organizations in the development of local health service priorities and incidence and prevalence rates of disease and other illness in the community; and (7) provide disease surveillance and assist Indian tribes, tribal organizations, and urban Indian communities to promote public health.” Public Law 10L-191, 110 Stat.1936 The Tribal Epidemiology Centers have been granted some authorities by law. An epidemiology center operated by a grantee pursuant to a grant awarded under subsection (d) shall be treated as a public health authority (as defined in section 164.501 of title 45, Code of Federal Regulations (or a successor regulation)) for purposes of the Health Insurance Portability and Accountability Act of 1996 (Public Law 104–191; 110 Stat. 1936). The Secretary shall grant to each epidemiology center described in paragraph (1) access to use of the data, data sets, monitoring systems, delivery systems, and other protected health information in the possession of the Secretary. The activities of an epidemiology center described in paragraph (1) shall be for the purposes of research and for preventing and controlling disease, injury, or disability (as those activities are described in section 164.512 of title 45, Code of Federal Regulations (or a successor regulation)), for purposes of the Health Insurance Portability and Accountability Act of 1996 (Public Law 104–191; 110 Stat. 1936). 5 | P a ge This report specifically addresses some of the successes of individual TECs and it also highlights significant challenges that the TECs have had in securing access to data and ensuring that data provided to our constituents is accurate, reflecting the state of health inequity present for American Indians and Alaska Natives. 6| P a ge 7 | P a ge INTRODUCTION The following report has been written to illuminate the situation, response and impact of Tribal Epidemiology Centers (TECs) to improve American Indian/Alaska Native (AI/AN) public health surveillance data availability and data quality. Facing multiple historical, social, economic and health challenges, the AI/AN population remains a small and often hard to reach population, creating difficulty in accurately including AI/AN data in local, state and national health status reports. Due to the unique sovereign government-to-government relationship between AI/AN Tribes and the U.S. federal government and a legacy of legal and jurisdictional rulings, AI/AN people are a minority population which differs from other U.S. racial and ethnic minorities. In response to increasing severity and costly health disparities between the AI/AN population and other races/ethnicities, TECs were established beginning in 1996 to address AI/AN population health data deficiencies and gaps as a foundation for improving health policy and expenditure decisions on the local, state and national levels. Today, there are 12 TECs serving the nation’s twelve Indian Health Service (IHS) Areas and urban Indian health programs. TECs have become valuable to Tribal communities, governmental agencies and academic institutions in the effort to reduce costly health disparities. (cid:120) TECs provide a vital link to AI/AN health data. This data influences health care policy, funding, and decision-making, and it strengthens the public health capacity of communities. (cid:120) TECs provide quality data analysis, culturally appropriate health information and technical assistance resulting in Tribal communities 8| P a ge gaining greater knowledge, empowerment, and influence over their own health care and wellness. (cid:120) TECs have trusted relationships with AI/AN communities, Tribal governments and AI/AN health organizations. (cid:120) TECs contribute to community-initiated strategies and interventions that reduce health disparities. The information in this report emphasizes the need for data availability and quality to substantiate health care decisions, and the innovative and individualized programmatic response of TECs to engage Tribal communities to meet that need. TECs have been able to demonstrate improved data access, quality and utilization. Although many obstacles continue to impede optimal representation of AI/AN in health status data, TEC staff and partners collaborating to reduce health disparities remain committed to continuing innovative, strategic and financially responsible efforts to improve health statistics. Indian Country and Indian Health Federally-recognized tribes of American Indians and Alaska Natives have a unique historic and legal government-to-government relationship with the U.S. government. This relationship has been given substance through numerous Supreme Court decisions, treaties, legislation, and Executive Orders, and entitles AI/ANs and their descendants to special rights, including health benefits. Under this trust responsibility, the U.S. has a legal obligation to protect Tribes’ assets and provide needed services to Indian people. The provision of health services grew out of this relationship. The federal trust responsibility for the provision of medical care and maintenance of public health functions was transferred to the Indian Health Service (IHS) in 1955. Today the national Indian Health Care Delivery System (IHCDS) consists of approximately 594 healthcare facilities located in 35 states, including 49 hospitals and 545 ambulatory facilities (231 health centers, five school-based health centers, 133 health stations, and 180 Alaska Native village clinics), where direct healthcare services are provided by some 3,000 priority primary care providers. The three main components of the IHCDS are: 1) programs that are operated by IHS directly; 2) programs that are tribally-operated; and 3) urban Indian health programs. Together, these components are referred to as IHS/Tribal/Urban, frequently abbreviated as I/T/U. 9 | P a ge