Engaging Underrepresented Communities in Health Research: Lessons Learned

Abstract

Members of marginalized communities experience health disparities or inequities and are underrepresented in health research. Community engagement in research is a catalyst for researchers to address health disparities while prioritizing community needs and strengthening community capacity. There is limited knowledge on how to engage underrepresented communities throughout the research process, particularly on initiating a partnership and planning research with a community. The purpose of this reflection piece is to share individual cases of research engagement within four communities: immigrant postpartum women, rural residents engaged in farming, low literate and non-English speaking adults, and individuals with intellectual disabilities in the United States. In each case, we explain how we initiated partnerships with the communities, continued to integrate community feedback to guide research questions, and implemented tailored methodologies. Finally, we discuss commonalities and differences in approaches used, tailoring within, and lessons learned when working with these diverse, underrepresented communities during the research process.

The RIC Recruitment & Retention Materials Toolkit – a resource for developing community-informed study materials

“…Additionally, this tool is not meant to replace but rather enhance the important work of research teams to authentically engage and build positive relationships with potential participants and community stakeholders. This is especially true with underrepresented communities in health research, where study teams must use culturally and contextually appropriate engagement strategies to build relationships with, demonstrate their commitment to, and show respect for these communities and their stakeholders [ 22 ]. Lastly, while the toolkit recommends proactive budgeting for materials, it does not provide detailed guidance on specific budget considerations for creating and disseminating recruitment and retention materials.…”

The Top 50 Most Cited Articles on Special Olympics: A Bibliometric Analysis

“…It is possible that the number of publications correlates with the extent to which a country is increasingly recognizing the importance of making people with intellectual disabilities visible rather than this demographic group remaining marginalized and underrepresented in our societies. However, even in the United States, people with intellectual disabilities often remain excluded in health research due to challenges with research access, recruitment, and retention [ 61 ].…”

A Window Into Mental Health: Developing and Pilot-Testing a Mental Health Promotion Intervention for Mexican Immigrants Through the Ventanilla de Salud Program

“…An important finding of this study was high levels of attrition. High attrition and underrepresentation of Latinos and other racial and ethnic minorities have been important challenges in health research (31). In this study, through the VDS, we were able to reach and enroll a sample of Mexican immigrants, a population that based on the various societal, cultural and economic challenges has been difficult to include in health interventions, but several factors limited the retention of more than half of the sample.…”