Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska

Abstract

AMERICAN INDIAN AND ALASKA NATIVE MENTAL HEALTH RESEARCH i FOREWORDWe are delighted to showcase a unique process for reaching out to, engaging, and disseminating research conducted among Alaska Native people. The Southcentral Foundation, notably its Research Department, led by Dr. Denise Dillard and her colleagues -the authors of this special issue − is widely respected for its deep commitment to pursuing research relevant to its customer/owners. Indeed, simply referring to their patient population in this fashion underscores the alignment of their mission, values, and actions. Frankly, I know of no other entity, tribal or otherwise, so fully dedicated in principal as well as practice to ensuring that its research is driven by stakeholders, that the results are translated into terms meaningful to them, that the findings reflect their perspectives, that the attendant insights are applied with local benefit, and that this work is undertaken in a scientifically rigorous manner that contributes to our understanding of the health and well-being of this special population. The articles herein testify to the effort required of such work and the potential return on investment for all participants.Unfortunately, much of today's conversation about outreach to, engagement of, and dissemination among Native communities proceeds at a level of abstraction that offers little guidance about actual process. Not so here. The authors describe in detail the nature of their research, steps taken to communicate findings to key stakeholders, the latter's reactions, and implications for this process. Their candid discussion of the challenges that arose during this endeavor represents a refreshingly authentic analysis of a difficult subject, the mechanics of which are often glossed over in the rush to exhort others to engage tribal communities. Of particular value is the authors' reflection on how the communication strategies available to them through the Southcentral Foundation can be mobilized to maintain the momentum of their initial efforts and to reinforce the reciprocity as well as transparency that characterized this undertaking. The lessons learned, and shared in the pages to follow, are important ones. Thank you for stretching yourselves beyond the typical role of researcher-as-scientist to illustrate these lessons and the wisdom contained therein. Beyond this introduction, the special issue consists of three sections. Section I describes the background information shared with Forum attendees, the structure and content of the Forum itself, and the methods used to gather community feedback. Section II depicts three SCF research studies that disseminated results differently, along with community feedback about clarity of results, sufficiency of information, and the degree to which information was presented in an interesting way. The three research studies concern dissemination of results from a T-SBIRT (i.e., trauma-focused screening, brief intervention, and referral to treatment) process, a stakeholder-driven decision support to...

Hearing Norton Sound: community involvement in the design of a mixed methods community randomized trial in 15 Alaska Native communities

“…Alaska Native communities have endured colonization and marginalization, some of which has been perpetuated through unethical research [ 23 , 33 , 34 ]. Research built upon community involvement is widely called for within the literature to prevent the perpetuation of colonialist dynamics between researchers and the researched [ 21 – 23 , 35 ]. Several studies conducted within Alaska Native or American Indian communities have highlighted community involvement as central to the success or sustainability of research programs [ 25 , 36 ].…”

“…Additional factors, such as competing priorities in participants’ daily lives or unfamiliarity with providing feedback on research design could have also contributed. These factors compound barriers that have been identified elsewhere in the literature on engagement with Alaska Native communities, such as difficulties communicating with remote and distinct communities across vast geographical regions, and distrust of research due to previous negative experiences [ 21 ]. To increase participation, the Communications Outreach Specialist and Lead Parent Stakeholder, who are from the region, moderated the focus groups alongside the local Lead Audiology Stakeholder and Lead Hospital Administration Stakeholder, and iteratively adjusted language around certain questions.…”

“…In health research with Alaska Native communities, such collaborative and community-based processes are encouraged, if not required, as ‘best practices’ [ 21 , 22 ]. However, few publications describe the processes of involvement within indigenous communities in the Circumpolar North [ 23 – 25 ].…”

Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System

“…Finally, members of all participant groups remarked on communication barriers and contextual factors-including negative perceptions of research, the geographic distribution and remote character of the patient population, and culturallyinformed perceptions of clinical terminology-that would need to be accounted for when developing an approach to communicating about precision medicine at SCF. Many of these barriers and factors were also identified in prior research involving this and other ANAI populations (Pacheco et al, 2013;Beans et al, 2018;Dillard et al, 2018). There was a particular focus on the need to culturally-adapt the language and terminology used to describe precision medicine and to frame the goals and risks and benefits of precision medicine in ways that speak to community concerns about the conduct of research and clinical care.…”

Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers

“…They include the mistrust of research, different research priorities, limited AN community research capacity, AN community and THO research burdens, institutional and logistical barriers, and misinformation and a lack of shared knowledge. [3][4][5][6][7][8] Key points related to challenges in conducting research with AN communities were concerned with AN community-level review of research recognition and exploration of the unique backgrounds and health needs of individual AN tribes and groups, the community-level review processes in AN communities, and the multiple responsibilities of the tribal leaders involved in the community-level review processes. Like many other Indigenous communities, AIAN people have experienced harm and ongoing stigmatization as a result of unethical and exploitative research practices.…”