Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study
Lead article author Cynthia Triplett will discuss this month's JAMIA Journal Club selection:
Triplett C, Fletcher BJ, Taitingfong RI, et al. Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study [published online ahead of print, 2022 Mar 29]. J Am Med Inform Assoc. 2022;ocac038. doi:10.1093/jamia/ocac038
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Cynthia is a research program manager in the Herbert Wertheim School of Public Health and Longevity Science at UC San Diego. She manages a diverse research portfolio on behalf of Dr. Cinnamon Bloss, including projects related to the privacy of health data, genetic modification of disease vectors, the integration of genetics and genomics in medical education, and community and stakeholder engagement around emerging technologies.
Cynthia received dual Master's degrees in Public Health (MPH) and Latin American Studies (MA), and is fluent in English and Spanish. In her hybrid role, she conducts research activities, provides project management, and serves as lab manager for the Bloss Lab. Her work primarily draws on qualitative and community-engaged research methods. Professional interests include understanding public trust in biomedical research, facilitating cross-discipline team science, and advancing health equity for underserved communities.
JAMIA Journal Club managers and monthly moderators are JAMIA Student Editorial Board members:
Statement of Purpose
In the United States, Native Americans have worse health outcomes on average than their nonnative counterparts, yet they remain underrepresented in many kinds of health research. Studies about lower rates of participation by Indigenous peoples in research have shown a variety of contributing factors including concerns of potential for misuse of health data about Native Americans in ways that could lead to discrimination or stigma, confidentiality breaches, and undesirable or unknown uses of biological specimens. Considering the diverse and heterogenous perspectives that exist across Native communities in the US, more research is needed to identify preferences of specific Native communities for privacy and protection of their health data, so that researchers can honor those preferences and facilitate the benefits of health research without incurring continued harm to these communities.
There is wide agreement in public health, biomedical, and genetics/genomics literatures that research involving Indigenous peoples should do so through more participatory, engaged approaches that include them as full, decision-making partners in a given research effort. Our work sought to take a CBPR approach to the design of a qualitative social science study to learn about privacy and data-sharing perspectives of Native American tribes connected to a federally funded epidemiological study known as the Strong Heart Study. Despite broad calls for community engagement and CBPR approaches to research involving Indigenous communities, early-stage activities undertaken to design such studies are rarely discussed in the scholarly literature. This paper reports on a workshop our team conducted with tribal leaders to co-design the planned qualitative study. By outlining our process and detailing findings from the workshop, we give readers insight into specific examples of activities that can be undertaken in collaborative design of qualitative research with community partners.
The target audience for this activity is professionals and students interested in health informatics.
After participating in this webinar the listener should be better able to:
- Identify key motivations for utilizing community-engaged approaches to research with Indigenous communities
- Describe examples of benefits and challenges of CBPR approaches to research with Indigenous communities
- Differentiate conventional top-down approaches to research design from collaborative, community-engaged approaches
- 35-minute presentation by article author(s) considering salient features of the published study and its potential impact on practice
- 25-minute discussion of questions submitted by listeners via the webinar tools and moderated by JAMIA Student Editorial Board members
The American Medical Informatics Association is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.