Exploring community engaged research experiences and preferences: a multi-level qualitative investigation
Hae‐Ra Han, Ashley Xu, Kyra Jennifer Waligora Mendez, Safiyyah Okoye, Joycelyn Cudjoe, Mona N. Bahouth, Melanie J. Reese, Lee Bone, Cheryl Dennison Himmelfarb
Abstract
BACKGROUND: Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for community engagement adopted by research teams and identify areas for enhancing engagement in future community engaged research. METHODS: The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research hosted a forum to engage researchers and community partners in group discussion to reflect on their diverse past and current experiences in planning, implementing, and evaluating community engagement in health research. A total of 50 researchers, research staff, and community partners participated in five concurrent semi-structured group interviews and a whole group wrap-up session. Group interviews were audiotaped, transcribed verbatim, and analyzed using content analysis. RESULTS: Four themes with eight subthemes were identified. Main themes included: Community engagement is an ongoing and iterative process; Community partner roles must be well-defined and clearly communicated; Mutual trust and transparency are central to community engagement; and Measuring community outcomes is an evolving area. Relevant subthemes were: engaging community partners in various stages of research; mission-driven vs. "checking the box"; breadth and depth of engagement; roles of community partner; recruitment and selection of community partners; building trust; clear communication for transparency; and conflict in community engaged research. CONCLUSION: The findings highlight the benefits and challenges of community engaged research. Enhanced capacity building for community engagement, including training and communication tools for both community and researcher partners, are needed.