History & Goals
Introduction:
The Northwest Tribal Registry Project was developed in January 1999 by the Northwest Tribal Epidemiology Center. Morbidity and mortality data on Northwest AI/AN exist in many health-related data sets not controlled by Indian health care programs, including state cancer registries, hospital discharge data sets, and state death certificates. Unfortunately, race data are often incorrectly or inconsistently recorded, leading to incomplete and inaccurate race-specific disease measures. By employing the record linkage methodology described below, the Registry Project allows for the identification of racial misclassification (e.g. AI/ANs classified as white) and thus a more accurate characterization of disease burden among the Northwest AI/AN population.
Background and need:
Over the last ten years health care delivery for Northwest AI/ANs has evolved from a centralized system maintained by the Indian Health Service (IHS), an agency within the Department of Health and Human Services, to a diverse and complex environment. Currently many Northwest Indian health care programs are operated by tribes under contracts (Title I) or compacts (Title III). This transfer of administration and management responsibilities to the tribes from IHS has had many positive results for tribal communities; however, the concomitant downsizing of IHS has limited its ability to provide disease surveillance for constituent tribes. Innovative disease surveillance approaches must now be developed that are responsive to the needs of the tribes and states, while accommodating the increasing diversity of tribal health care delivery systems.
Most of the existing reports on the health status of Northwest American Indians are from data collected at a regional or national level. Since both health and disease are, in effect, “created” at the community level, measuring health status at the regional and national levels creates a paradox for tribal health program managers. Decisions must be made based on aggregate data showing regional or national disease rates which may not be applicable to the local community. This problem is further complicated by racial misclassification. Race-specific disease rates are published from a number of sources, but misclassification limits the accuracy of those reports by underestimating disease burden. Rate comparison among different tribes and regions is especially problematic.
Program Successes:
The Registry has raised state and national awareness of health disparities and racial misclassification among American Indians and Alaska Natives in the Pacific Northwest and throughout the country. Following are a sample of completed health data linkages:
OR and WA state death certificates linkage June 1999
First state cancer linkages Fall 1999
OR STD linkage June 2001
WA state STD linkage October 2002
WA state HIV/AIDS linkage December 2002
SEER Registry of Seattle/Puget Sound linkage December 2002
WA state death certificates linkage September 2003
Future Goals:
Because tribal level data can be useful for programmatic and clinic planning, in addition to documenting need for grant applications, The Registry is dedicated to working with tribes to attain available data (cancer and other health topics). Tribal linkages using enrollment files have been performed in the past to develop the most accurate tribal level data available. We hope to work with NW Tribes on similar projects for cancer and other health related data.
The Registry is interested in working with the state trauma registries to perform racial misclassification linkage studies in those datasets. The incidence of injury is known to be high within the AI/AN community, but we know correcting racial classifications would make the disparity even more pronounced.
Another important health topic for the AI/AN population is diabetes. The most common cause of end stage renal disease (or renal failure) is diabetes putting AI/ANs at particularly high risk. The Registry also intends to work with the NW Renal Network to complete a record linkage study.
