Many American Indians and Alaska Natives (AI/ANs) view research with skepticism and mistrust, in part because research has historically been done in or on communities rather than with them. As a result, partnerships with Native communities are challenged by distrust of scientific research, misunderstandings, and competing priorities between researchers and community members. We have shown that factors significantly increasing odds of participation in research include conduct of the study by a tribal entity, involving the community in its design, having an AI/AN project lead, offering compensation, focusing on problems important to the community, and providing services. Inclusion of disparity populations in Alzheimer's disease and related dementias (ADRD) research has emerged as a priority for the National Plan to Address Alzheimer's Disease. Yet, the Clinical Cores (CC) of the Alzheimer's Disease Research Centers (ADRCs) have recruited only 248 (0.06%) AI/ANs over 30+ years; the University of Washington ADRC has enrolled only 3 AI/ANs during this time. CC participants are evaluated according to a single protocol, which may hinder enrolling AI/ANs if the content, approach, and compensation are not salient to, or aligned with, their experiences, expectations, or culture. Partnerships for Native Health, one of the nation's largest groups conducting health research in Native communities, has collaborated with the UW ADRC for the past 5 years. We are now poised to enroll AI/ANs into the Native Research and Resource Core (NRRC) by conducting 2 complementary activities. In PY01-02, we will conduct qualitative research with AI/AN stakeholders to review the standard UW CC protocol and identify facilitators and barriers to participation. Next, the CC will help design alternative protocols for use in the NRRC. With the National Congress on American Indians, the largest organization serving tribal governments, we will host 4 workshops that assemble investigators and urban and tribal nation representatives to discuss tribal-academic research partnerships, including possible strategies for data-sharing. In PY03-05, we will use the alternative protocols developed in Phase 1 to recruit AI/ANs into NRRC.
Our Specific Aims are to: 1) Conduct focus groups and key informant interviews with urban and rural AI/AN elders and other stakeholders to understand barriers to and promoters of participation in the UW CC and create alternative NRRC protocols that retain essential CC components; 2) Conduct workshops with stakeholders in tribal-academic partnerships to explore strategies that might allow data collected from AI/AN participants in the NRRC to be shared with the National Alzheimer's Coordinating Center; 3) Evaluate the effectiveness of the alternative, culturally informed protocols for increasing AI/AN recruitment into the NRRC; and 4) Work with ADRC Cores to promote NRRC participation, appraise protocols, conduct examinations, perform neuroimaging, and assign UW identification codes to participants. NRRC is a first step toward remedying the underrepresentation of AI/ANs in ADRD research, addressing decades of neglect and recent calls for diversity. This effort could serve as a resource and a model for all ADRCs.
