Amplifying and Responding to the Voices of Community Members: Experiences of Clinical and Translational Research Programs

Abstract Information: Clinical and Translational Research (CTR) aims to advance the knowledge discovered in laboratories, clinical trials and population health studies. These innovations must yield real-world impacts that improve the effectiveness of medical care and public health, particularly for health conditions that are of high importance to communities. Funding agencies and clinical research enterprises are striving to augment the voice of community members in all stages of the translational research process. For example, the National Institute for General Medical Sciences IDeA Clinical & Translational Research Network (CTR-N) program tasks their funded sites with developing a Community Engagement and Outreach (CEO) Core. CEO core activities include engaging patients from community clinics in the research supported by the CTR-N, building trust with community groups, and elevating the community’s health needs within the CTR-N’s research agenda with special attention to health disparities. However, it is a formidable challenge for both investigators and research program administrators to effectively include and respond to the voices of patients and community members. Key issues include navigating differences in the needs and expectations of investigators and community members, incorporating community input within the rigid paradigms of research institutions, and avoiding transactional relationships that can leave community groups feeling exploited. Evaluators working in these projects are themselves challenged as they attempt to support and assess those engagement efforts. This session presents the experiences of evaluators from a CTR program and a collective that have confronted these and related challenges. More specifically, evaluators from Advance RI-CTR will share how their evaluation helped to initiate local community engagement, leveraged early attention to community-voiced health needs to inform the focus of a community action and advisory board, and continues to track the extent to which those community needs are reflected in research generated by the CTR-N. Evaluators from the Oklahoma Shared Clinical and Translation Resources (OSCTR) will explain their strategies for ensuring community sovereignty of research data, and discuss principles for cooperating with community groups to disseminate research findings. These presentations will lead the audience to consider key questions generated by our evaluations and lead to a discussion moderated by our discussant: What works to bring authentic community voices to the table? How can CTR programs and translational researchers better incentivize research addressing community health priorities? What approaches yield successful community-involved and community-directed research? And, what options exist for feasibly measuring the engagement process and the outcomes of community-engaged research?