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Access, Relevance, and Control in the Research Process

Lessons From Indian Country

University of Colorado Health Sciences Center

Eva Garroutte

Boston College

R. Turner Goins

West Virginia University Health Sciences Center

Patricia Nez Henderson

University of Colorado Health Sciences Center

Objective:To illustrate successful strategies in working with American Indian (AI) and Alaska Native (AN) communities in aging and health research by emphasizing access, local relevance, and decision-making processes. Methods:Case examples of health studies involving older AIs (50 years) among Eastern Band Cherokee Indians, a federally recognized reservation; the Cherokee Nation, a rural, nonreservation, tribal jurisdictional service area; and Lakota tribal members living in Rapid City, South Dakota. Results: Local reviewand decision making reflect the unique legal and historical factors underpinning AI sovereignty. Although specific approval procedures vary, there are common expectations across these communities that can be anticipated in conceptualizing, designing, and implementing health research among native elders. Conclusions:Most investigators are unprepared to address the demands of health research in AI communities. Community-based participatory research in this setting conflicts with investigators’ desire for academic freedom and scientific independence. Successful collaboration promises to enhance research efficiencies and move findings more quickly to clinical practice.

Key Words: community-based participatory research • health • American Indians • elders

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