Disseminating research in rural Yup'ik communities: challenges and ethical considerations in moving from discovery to intervention development

Rivkin, Inna; Trimble, Joseph E.; López, Ellen D. S.; Johnson, Samuel G.; Orr, Eliza; Allen, James

doi:10.3402/ijch.v72i0.20958

Cited by 24 publications

(25 citation statements)

References 19 publications

(28 reference statements)

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“…Despite significant cultural, geographical, and socioeconomic differences between the study sites, there were many points of agreement. Consistent with other studies [Rivkin et al, 2013; Yu et al, 2013a; Yu et al, 2013b], participants at both sites were most interested in information that could help them stay healthy and that was directly relevant to their health concerns and those of their family and/or community; there was less interest in results that do not yet have health or clinical applications.…”

Section: Discussionsupporting

confidence: 78%

Community dissemination and genetic research: Moving beyond results reporting

Trinidad

Ludman

Hopkins

et al. 2015

American J of Med Genetics Pt A

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The community-based participatory research (CBPR) literature notes that researchers should share study results with communities. In the case of human genetic research, results may be scientifically interesting but lack clinical relevance. The goals of this study were to learn what kinds of information community members want to receive about genetic research and how such information should be conveyed. We conducted 8 focus group discussions with Yup’ik Alaska Native people in southwest Alaska (N=60) and 6 (N=61) with members of a large health maintenance organization in Seattle, Washington. Participants wanted to receive genetic information they “could do something about” and wanted clinically actionable information to be shared with their healthcare providers; they also wanted researchers to share knowledge about other topics of importance to the community. Although Alaska Native participants were generally less familiar with western scientific terms and less interested in web-based information sources, the main findings were the same in Alaska and Seattle: participants wished for ongoing dialogue, including opportunities for informal, small-group conversations and receiving information that had local relevance. Effective community dissemination is more than a matter of presenting study results in lay language. Community members should be involved in both defining culturally appropriate communication strategies and in determining which information should be shared. Reframing dissemination as a two-way dialogue, rather than a one-way broadcast, supports the twin aims of advancing scientific knowledge and achieving community benefit.

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Section: Discussionsupporting

confidence: 78%

Community dissemination and genetic research: Moving beyond results reporting

Trinidad

Ludman

Hopkins

et al. 2015

American J of Med Genetics Pt A

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“…Community member involvement in disseminating results has potential to make information more acceptable and meaningful, especially in AN/AI communities (McShane, Smylie, Hastings, & Martin, 2006; Rivkin et al, 2013; Smylie, Kaplan-Myrth, & McShane, 2009). During the Forum, attendees were asked to suggest who in the community should receive study results.…”

Section: Discussionmentioning

confidence: 99%

Disseminating the Results of a Depression Management Study in an Urban Alaska Native Health Care System

Dirks¹,

Avey²,

Hiratsuka³

et al. 2018

AIANMHR

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Increased attention to diagnostic accuracy in depression screening and management within primary care has demonstrated inadequate care when patients prematurely discontinue recommended treatments such as medication and counseling. Decision-support tools can enhance the medical decision-making process. In 2010, the Southcentral Foundation (SCF) Research Department developed a stakeholder-driven decision support tool to aid in depression management. This paper describes feedback from attendees at SCF’s 2016 Alaska Native Health Research Forum (Forum) regarding a dissemination product highlighting the aforementioned study. Forum attendees participated in a small group discussion and responded to a brief survey using the audience response system. Thematic analysis was conducted on data from the small group discussion. Overall, Forum attendees responded favorably to the dissemination product. Most agreed the presentation was clear, the amount of information presented was appropriate, and that results were presented in an interesting way. Small group discussion participants provided constructive feedback about why depression-related research results should be shared; how they believed results should be best shared; who results should be shared with; when and where results should be shared; and what level of research results should be shared. The stigma associated with depression treatment may be assuaged if results are shared in a way that normalizes support for depression treatment. Community member involvement in disseminating results has potential to make information more acceptable and meaningful.

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“…as focus group or individual interview participants to elicit feedback on project planning or dissemination; or as research participants in the subsequent study. Rivkin et al (2013) provide a framework for collaborative community dissemination in which the community guides all aspects of the research, including sharing findings.…”

Section: Discussionmentioning

confidence: 99%

“…Community member involvement in disseminating results has potential to make information more acceptable and meaningful, especially in AN/AI communities (McShane, Smylie, Hastings, & Martin, 2006;Rivkin et al, 2013;). During the Forum, attendees were asked to suggest who in the community should receive study results.…”

Section: Discussionmentioning

confidence: 99%

“…Effective CER dissemination considers the importance of "multidirectional" information exchange, which includes establishing trusting alliances and a setting that allows for comfortable communication, so that research information is relevant to the community (Bowen & Martens, 2005;Elsabbagh et al, 2014). Relevancy to AN/AI communities includes disseminating results that take into consideration local context (Legaspi & Orr, 2007;McDonald et al, 2016;Timmons et al, 2007), appropriate language, information that is both practical to researchers and community members (MacKenzie et al, 2015), and information that considers local values with incorporation of AN/AI knowledge and expertise as integral parts of the process (Legaspi & Orr, 2007;Rivkin et al, 2013). Direct communication can strengthen community trust in research, while concurrently enhancing researchers' understanding of community concerns and perceptions of research (Legaspi & Orr, 2007;McDavitt et al, 2016).…”

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confidence: 99%

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2018

AIANMHR

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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.Section I of this special issue describes the background information shared with Alaska Native Health Research Forum attendees, the structure and content of the Forum itself, and the methods used to gather community feedback. CHALLENGES IN ENGAGING 3In this article of the special issue, we describe the background information shared with attendees of the Alaska Native Health Research Forum (Forum) to position activities within the local context. We briefly present the history of health care with Alaska Native and American Indian (AN/AI) people in Alaska and the current Southcentral Foundation (SCF) system of care. We then describe the history of research and the SCF Research Department'...

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Disseminating research in rural Yup'ik communities: challenges and ethical considerations in moving from discovery to intervention development

Cited by 24 publications

References 19 publications

Community dissemination and genetic research: Moving beyond results reporting

Community dissemination and genetic research: Moving beyond results reporting

Disseminating the Results of a Depression Management Study in an Urban Alaska Native Health Care System

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