Assessing the context within academic health institutions toward improving equity-based, community and patient-engaged research

• Published in: Journal of clinical and translational science 2025, Vol.9 (1), p.e6, Article e6
• Main Authors: Adsul, Prajakta, Sanchez-Youngman, Shannon, Dickson, Elizabeth, Jacquez, Belkis, Kuhlemeier, Alena, Muhammad, Michael, Briant, Katherine J, Hempstead, Bridgette, Mendoza, Jason A, Rosas, Lisa G, Patel, Anisha, Rodriguez Espinosa, Patricia, Akintobi, Tabia, Castro-Reyes, Paige, Carter-Edwards, Lori, Wallerstein, Nina
• Format: Article
• Language: English
• Subjects: academic health institutions; Cancer; Collaboration; Community; community-based participatory research; Empowerment; Focus groups; implementation science; institutional context; Institutional Transformation to Support CBPR and Patient/Community Engaged Research; Participatory research; Patient and community engagement; Patients; Teams; Workshops
• ISSN: 2059-8661; 2059-8661
• DOI: 10.1017/cts.2024.675

The continued momentum toward equity-based, patient/community-engaged research (P/CenR) is pushing health sciences to embrace principles of community-based participatory research. Much of this progress has hinged on individual patient/community-academic partnered research projects and partnerships with minimal institutional support from their academic health institutions. We partnered with three academic health institutions and used mixed methods (i.e., institution-wide survey ( = 99); qualitative interviews with institutional leadership ( = 11); and focus group discussions (6 focus groups with patients and community members ( = 22); and researchers and research staff ( = 9)) to gain a deeper understanding of the institutional context. Five key themes emerged that were supported by quantitative data. First, the global pandemic and national events highlighting social injustices sparked a focus on health equity in academic institutions; however, (theme 2) such a focus did not always translate to support for P/CenR nor align with institutional reputation. Only 52% of academics and 79% of community partners believed that the institution is acting on the commitment to health equity (Χ = 6.466, < 0.05). Third, institutional structures created power imbalances and community mistrust which were identified as key barriers to P/CenR. Fourth, participants reported that institutional resources and investments are necessary for recruitment and retention of community-engaged researchers. Finally, despite challenges, participants were motivated to transform current paradigms of research and noted that accountability, communication, and training were key facilitators. Triangulating findings from this mixed-methods study revealed critical barriers which provide important targets for interventions to improving supportive policies and practices toward equity-based P/CenR.