Developing Tribal Health Profiles for American Indians/Alaska Natives in the Northwest: Finding a Balance Between Tribes' Information Needs and the Availability of Accurate Health Data

BACKGROUND:   American Indians/Alaska Natives (AI/AN) experience persistent health disparities, yet efforts to address these are hindered by limitations in the quality, usefulness, and relevance of available health data. Challenges include inaccurate race information in disease registries, suppression due to small numbers, and lack of local-level information. Since 1996, the Northwest Tribal Epidemiology Center (NW-TEC) has implemented several initiatives to address these problems for tribes in Oregon, Washington, and Idaho, and is currently developing comprehensive tribal health profiles (THPs) to provide Northwest tribes with accurate and up-to-date information on their communities’ health. 

METHODS:   A planning team identified priority health topics by surveying tribal health representatives from 43 federally-recognized Northwest tribes, and selected health indicators within each priority topic area based on data availability and quality from state and federal sources. When possible, we utilized race-corrected data from an internal NW-TEC linkage project. We included demographic information from the U.S. Census Bureau, prevalence data from the Behavioral Risk Factor Surveillance System (BRFSS), and quality of care measures from the Indian Health Service (IHS).   Most indicators required combining several years of data to obtain statistical stability.  When possible, we presented prevalence, hospitalization, and mortality rates by sex, and identified disparities by comparing to non-Hispanic Whites (NHW) within each state. To ensure the THPs meet tribes’ needs, we surveyed tribes on the content and layout of a draft state-level report. 

RESULTS:   State-level THPs include over 50 indicators in 12 topic areas, and include information on demographics, maternal and child health, chronic diseases, injuries, mental health, and substance abuse. By utilizing several data sources, THPs provide a comprehensive understanding of disease burden, mortality, risk factors, and quality of care for specific health outcomes. For example, BRFSS data show that approximately 5% of AI/AN in Washington reported having heart disease, similar to NHW. Further, fewer Washington AI/AN hospitalizations were for heart disease compared to NHW (6.4% vs. 9.9%). However, AI/AN were 67% more likely than NHW to die from heart disease, and only 39.4% of Northwest IHS heart disease patients have received the recommended health screenings to manage their condition.

CONCLUSIONS:   The THPs can be used by Northwest tribes to establish baseline information on their communities’ health, prioritize limited public health and healthcare resources, apply for grants, and identify areas for additional data collection. After completing state-level THPs for Oregon, Washington, and Idaho, NW-TEC will work with tribes to produce local THP reports that incorporate tribe-level data.