Engaging Tribal Participation in Research through Priority Setting and Regulation

The recruitment of American Indians and Alaska Natives (AI/AN) to participate in research is complicated by a long and troubled history between researchers and Native populations of the United States regarding the collection of Native American remains, cultural artifacts, and access to and use of natural resources, as well as health research. This history has led to widespread distrust and reluctance to participate in research. Many of the tensions between AI/AN communities and researchers have centered on differing researcher and tribal community views about what topics are of interest to study, who is involved in setting the research agenda, and the use of data collected for specific health-related research. Increasing AI/AN participation in research will require expanding the role that tribal community members have in both setting the agenda for research and maintaining control over the research processes and outcomes to assure that tribal members derive short as well as long-term benefits from the research process. Studies have shown that AI/AN willingness to participate in research improves if they or members of their community are involved in the project development, data collection and interpretation of results; the willingness to participate increases even more if the research involves a topic of concern to the tribal community. This project will develop, implement and document processes to increase tribal participation in research by identifying health research priorities and a research regulation process that reflects the priorities and concerns of tribal community members. The specific aims of this research are to: (1) Elicit community members' priorities for health interventions and research, and their knowledge, attitudes, and willingness to participate in research; (2) Engage tribal leadership and community advisors to develop a research oversight and regulatory process; and (3) Develop and disseminate a set of tool kits to increase participation in research, based on the processes and outcomes of this research: Tool kit #1 will document the processes for developing community priorities on health topics for intervention and research and publish the final list of health priorities for the Squaxin Island Tribe; Tool kit #2 will document the deliberation process for choosing among different research regulation options given tribal resources, and publish the resulting regulatory codes and policies. The products from this research will support increased participation in research by underserved communities by developing capacity to join in as full research partners, thereby directing that research done in these communities will be relevant and lead to positive changes and tangible benefits. The tools kits will provide examples of the processes and outcomes of eliciting health and research priorities and organizing the infrastructure to support community regulation of research and will be posted on the web for use by other tribes, other underserved communities, and researchers.