UMass Center for Clinical and Translational Science; Department of Population and Quantitative Health Sciences; Department of Medicine; Division of Preventive and Behavioral Medicine, Department of Population and Quantitative Health Sciences
Epidemiology | Health Services Research | Race and Ethnicity | Translational Medical Research
Introduction: 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. 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.
Results: 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.
Conclusions: 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.
Research participation, eConsent, health disparities, intervention
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Copyright © The Association for Clinical and Translational Science 2021. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
DOI of Published Version
Danila MI, Allison JJ, Goins KV, Chiriboga G, Fischer M, Puliafico M, Mudano AS, Rahn EJ, Merchant J, Lawrence CE, Dunkel L, Israel T, Barton B, Jenoure F, Alexander T, Cruz D, Douglas M, Sims J, Richmond A, Roberson ED, Chambless C, Harris PA, Saag KG, Lemon SC. Development of a multi-component intervention to promote participation of Black and Latinx individuals in biomedical research. J Clin Transl Sci. 2021 Jun 14;5(1):e134. doi: 10.1017/cts.2021.797. PMID: 34367678; PMCID: PMC8327553. Link to article on publisher's site
Journal of clinical and translational science
Danila MI, Allison JJ, Goins KV, Chiriboga G, Fischer MA, Puliafico M, Barton BA, Jenoure F, Lemon SC. (2021). Development of a multi-component intervention to promote participation of Black and Latinx individuals in biomedical research. Population and Quantitative Health Sciences Publications. https://doi.org/10.1017/cts.2021.797. Retrieved from https://escholarship.umassmed.edu/qhs_pp/1436
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This work is licensed under a Creative Commons Attribution 4.0 License.