Abstract
Barriers to research participation by racial and ethnic minority group members are multi-factorial, stem from historical social injustices and occur at participant, research team, and research process levels. The informed consent procedure is a key component of the research process and represents an opportunity to address these barriers. This manuscript describes the development of the Strengthening Translational Research in Diverse Enrollment (STRIDE) intervention, which aims to improve research participation by individuals from underrepresented groups. We used a community-engaged approach to develop an integrated, culturally, and literacy-sensitive, multi-component intervention that addresses barriers to research participation during the informed consent process. This approach involved having Community Investigators participate in intervention development activities and using community engagement studios and other methods to get feedback from community members on intervention components. The STRIDE intervention has three components: a simulation-based training program directed toward clinical study research assistants that emphasizes cultural competency and communication skills for assisting in the informed consent process, an electronic consent (eConsent) framework designed to improve health-related research material comprehension and relevance, and a "storytelling" intervention in which prior research participants from diverse backgrounds share their experiences delivered via video vignettes during the consent process. The community engaged development approach resulted in a multi-component intervention that addresses known barriers to research participation and can be integrated into the consent process of research studies. Results of an ongoing study will determine its effectiveness at increasing diversity among research participants.
Highlights
Barriers to research participation by racial and ethnic minority group members are multi-factorial, stem from historical social injustices and occur at participant, research team, and research process levels
We included in our research teams one or more Community Investigators (CIs), local community members of diverse racial/ethnic backgrounds, who contributed to intervention development and pilot testing, and who will participate in dissemination activities
The principal investigator of an ongoing clinical research registry at one of the participating institutions agreed to share the associated “live” paper consent document for review by Strengthening Translational Research in Diverse Enrollment (STRIDE) CIs and research staff, as well as have an integrated eConsent platform built and shared with participating University of Alabama at Birmingham (UAB) research assistants/nurses and community members for their input during the piloting phases. We initially reviewed this exemplar clinical trial’s paper consent document with the STRIDE CIs, a UAB Office of the Institutional Review Board (IRB) representative, and the STRIDE research team to assess literacy level, readability, and functionality with the intervention components
Summary
Barriers to research participation by racial and ethnic minority group members are multi-factorial, stem from historical social injustices and occur at participant, research team, and research process levels. The informed consent procedure is a key component of the research process and represents an opportunity to address these barriers This manuscript describes the development of the Strengthening Translational Research in Diverse Enrollment (STRIDE) intervention, which aims to improve research participation by individuals from underrepresented groups. Methods: We used a community-engaged approach to develop an integrated, culturally, and literacy-sensitive, multi-component intervention that addresses barriers to research participation during the informed consent process. Minority populations living in the USA disproportionately suffer from the leading causes of death and disability [1], they are often underrepresented [2] in health-related research compared to non-Latinx whites This underrepresentation in clinical studies has resulted in treatment guidelines and clinical practices that may not be effective across diverse racial/ethnic groups, potentially further perpetuating health inequalities [3].
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