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CSTE Tribal Epidemiology Toolkit

Toolkit Sections
Background and Introduction
Data Collection
Data Linkage
Data Sharing
Collaboration Examples
Communication Resources/Tools

As shown by national health data, American Indians/Alaska Natives (AIANs) suffer significant health inequities; that is, disparities in health status that are systemic and preventable, and therefore unjust. For example, according to the Centers for Disease Control and Prevention (CDC), AIAN adults are twice as likely to have diagnosed diabetes than non-Hispanic whites, the AIAN infant death rate is 48% greater than the rate among white mothers, and both AIAN youth and adults have a greater prevalence of current smoking than any other racial/ethnic population in the United States. Rates of substance abuse, violence and obesity are also high among AIANs, compared with non-Hispanic whites.
The collection of health data—and documentation of disparities—can have a profound effect on governmental activities and funding. Data inform public health interventions and the design of culturally appropriate materials, guide public health practice and research, and may be necessary to apply for grants. Importantly, data ownership empowers tribal communities so they know how to enhance their own wellness and healthcare.
Too often, however, the acquisition and use of public health data—identifiable data, especially—are limited by privacy rules or other restrictive policies. Public health authorities may be reluctant to share data, even for legitimate public health purposes, because of concerns about individual privacy or potential legal consequences. As a result, public health entities can lack access to the data needed to inform essential services for AIAN populations. Although access to identifiable data is a problem generally, tribal public health authorities, in particular, report extensive difficulties with data-sharing by state and local public health authorities.
The Tribal Health System
The complexity of the U.S. tribal health system poses special challenges to public health authorities. There are 566 sovereign, federally-recognized tribes, each with a nation-to-nation relationship with the United States. However, because of historical treaties and policies, the U.S. government maintains a “trust responsibility” for AIAN communities, including a legal obligation to provide social, medical and other services to AIAN people.
The Indian Health Service (IHS)—an agency within the U.S. Department of Health and Human Services—provides medical and public health services to AIANs as part of the federal trust responsibility. The IHS consists of 594 healthcare facilities, spread out amongst 35 states. These facilities are operated either directly by the IHS, by tribal authorities, or by urban health boards. However, because the IHS is a payer of last resort, AIAN individuals are encouraged to use private health insurance, Medicare, or Medicaid to pay for healthcare services. This tiered payment system means AIAN health data is spread across multiple sources and must be pooled for a complete and accurate understanding of health status in Indian Country.
The relationship between state/local health agencies and tribal health agencies varies across jurisdictions. Some states fund a tribal liaison or have formal consultation polices to assure ongoing dialogue with local tribes. However, consultation policies are not uniformly enforced. The diversity of state policies leads to challenges in public health surveillance of tribal populations. Fortunately, most tribal clinics do report notifiable diseases to state health authorities to facilitate epidemiologic surveillance.
National surveys, an important source of health data, are also problematic for those working on tribal health issues, as AIAN representation among survey respondents is often inadequate to estimate the health status of AIAN populations.
In part to address widespread AIAN data deficiencies, in 1996, the IHS established several tribal epidemiology centers (TECs). Today, there are 12 TECs nationwide. These centers rely on the sharing of public health data collected by federal, state and local governments on AIAN populations to conduct a variety of epidemiologic activities to improve tribal health. TECs provide similar functions as a state or local health department by monitoring surveillance, assisting with disease investigations and developing health profiles for the tribes and AIAN populations in their service area. Yet, even though TECs are legitimate public health authorities, as authorized under the 2010 Indian Health Care Improvement Act, they often lack access to the data necessary to carry out their mission.
Toolkit Purpose
At meetings in Albuquerque, NM, in May 2008 and September 2013, the CSTE Tribal Epidemiology Subcommittee identified a series of actions and recommendations to improve public health surveillance in Indian Country. Among these was the need to encourage data-sharing between state/local health departments and tribal entities. This toolkit of resources and best practices is a direct result of that recommendation and is geared for those needing to access health data as part of broader efforts to improve the health of AIAN populations.
Toolkit authors hope this resource will provide useful guidance for working with tribal health data and with the entities responsible for that data. By highlighting data-sharing best practices and issues pertaining to data quality, the toolkit is intended to improve public health surveillance in Indian Country, so authorities may better address health inequities and enhance collaboration among state, federal and tribal partners.

HomeBackground and IntroductionData CollectionData LinkageData SharingCollaboration ExamplesCommunication Resource/Tools