Abstract
Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities.
Highlights
Self-determination is the process and authority by which nations establish allegiances and pursue independent social, economic, and cultural aims
The guidelines for researchers contain four areas of note: (1) alignment to Southcentral Foundation (SCF) organizational tenets; (2) quality of research design; (3) depiction and involvement of Alaska Native people; and (4) topical areas considered sensitive with the tribal organization
Within the quality of research design section of the guidelines, researchers are directed to balance the collection of both strengths/protective factors and risk/pathology variables as well as transparently describe data collection, analysis plans, and dissemination with attention to how Alaska Native (AN)/American Indian (AI) people will learn about results
Summary
Self-determination is the process and authority by which nations establish allegiances and pursue independent social, economic, and cultural aims. Some AN/AI communities that have elected to self-govern health care have enacted Tribal IRBs or other policies to oversee health research, whereas others have implemented tribal research review bodies to work alongside the IHS Area IRB [12,29]. The latter option, of establishing an independent review process focused on local tribal values and conducted by individuals granted authority under. AN/AI entities who are considering exercising sovereignty over health research, and for the research community as a whole to better understand the overall intent and nature of tribal review
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