ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Cultivating Authentic Partnership: Cooperative Development of a Toolkit to Mitigate Group Harm in Biorepository-Enabled Research.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
introductionPractitioners currently lack guidance on how to evaluate the potential negative impacts of biorepository research on communities. We set out to create a product for researchers and oversight boards that would assist them in 'doing right' by communities as they conduct this research. Given that this product would represent the interests of affected communities, it was essential that community voices led its development. One well-documented challenge of community-engaged research is navigating the systemic power imbalance between communities and research institutions. This paper details our participatory research (PR) approach, which sought to mitigate these dynamics through extension of the Community Engagement Studio (CES) methodology for sustained, multi-year engagement with the same community experts and facilitators.
methodsOur adapted participatory methodology was developed and iterated through a three-phase project. In Phase 1: Community-Driven Conceptualisation, we convened seven 90-min CESs (stylised focus groups) with four cohorts of community experts and facilitators from marginalised groups: American Indian, Alaska Native, Native Hawaiian, Pacific Islander; Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual, Two-Spirit; Black/African American; and individuals with high-penetrance genetic variants. In Phase 2: Community-Centred Design and Feedback, the community experts and facilitators reviewed the initial toolkit design generated from CES-derived insights in six 1-hour meetings. Finally, in Phase 3: Community Co-Analysis, the community experts and facilitators co-analysed toolkit pilot feedback in a series of three to five 90-min sessions across four pilot sites. Throughout each phase, community feedback was used to drive planning, finalise materials and define takeaways.
resultsOur sustained engagement promoted trust and enabled deep exploration of complex topics. Challenges included retaining community experts over time and bridging conceptual insights with concrete design.
conclusionThis paper offers a reference for optimising research impact through effective PR, highlighting the benefits of sustained engagement and strategic mitigation of power imbalances in academic-community collaborations. PATIENT OR PUBLIC CONTRIBUTION: Members of select communities affected by group harm were included as compensated collaborators in each study phase. These community experts drove early ideation, informed beta design, co-analysed pilot data and provided integrated feedback on this manuscript.
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