Written by Robert Doyle, data coordinator for the REACH Initiative at the Institute for Clinical and Translational Research/Center for Community Health Partnership & Research at the Institute for Public Health
Diversity of participation in National Institute of Health (NIH) research became a mandate with the NIH Revitalization Act of 1993, yet nearly 25 years later, many researchers continue to struggle with minority recruitment.
Infamous studies such as the Tuskegee Experiment in the past have formed a negative perspective of research that lingers in minority communities, and trust in the medical community remains fractured. Researchers need to design their research priorities and study interventions with historical wrongdoings and traditional barriers to research in mind. The best way to successfully do this is by designing research collaboratively with the community.
Among African-Americans, the largest minority race in the St. Louis area, there is a perception that the researchers are not interested in the welfare of the individual or that the research will only benefit Whites or the research institution and not come back to people of color.2 One way to combat this perception is to engage community stakeholders early in the process—before a grant is even submitted. Instead of starting the conversation with “do you want to be a part of my study?” during the recruitment phase, start it with, “what are your health needs and priorities?” or “what would you keep in mind if you were a researcher in designing a study on [any given disease or condition]?” This makes the final product more relevant, patient-centered and impactful. Diverse recruitment will be a natural byproduct, as your potential end users had a stake early on.
Another common perception is that African-Americans perceive informed consent as a signing away of rights.3 The consent process should be the heart of a research enrollment; information presented needs to be clear, succinct, and present the opportunity for dialogue. It is not a document to rush through for a signature, but instead a teaching opportunity to detail the rights and protections of research participants. If a potential participant is hesitant or unclear about what consent means, the enrollment should not continue. Repeated reminders of rights should occur throughout the research enrollment period, and participants should know who to call with any concerns. As a Principal Investigator, emphasizing consent as the most essential component of participant enrollment will help reduce mistrust. Create a training protocol to “test out” research coordinators and research assistants on consent procedures prior to engaging with potential participants.
As a Principal Investigator, emphasizing consent as the most essential component of participant enrollment will help reduce mistrust.
Other ways to reduce barriers to participation involve planning around everyday life:
- Provide designated, accessible parking or passes for public transportation that make arriving at the university easy.
- The campus is big—send a map with detailed directions in advance to participants.
- Designate time for weekend or evening appointments to accommodate work schedules.
- Have bilingual research staff to support potential participants where English is a second language.
- Provide child care at no cost.
- Partner with places people go in the community—like social service agencies, faith-based communities, or schools—to conduct research.
- Build strong research partnerships where both community partners and researchers share power and responsibility equitably, and the research is designed to be mutually beneficial for all partners.
Keeping participants informed of the results of the study is essential—those who contribute to the research should benefit from the results. One of the most common complaints we hear in community settings (and often from minorities) is that they never hear what happened with a study they were part of. Create a brief, easy-to-understand document with the study results and implications for them—what should I do the same or differently as a result of this research? Share this document with every research participant via email or mail and ask them to follow up with questions or comments. Share results on social media, with local media outlets, and in community group settings. Create short videos to disseminate results—be creative and design dissemination with the potential end users.
The Center for Community Health Partnership & Research offers infrastructure support to research teams in the area of community-engaged research and stakeholder engagement. If you are interested in learning more about our services or collaboration with us, please email communityhealth@wustl.edu or call 314-273-1010.
References
1Getz (2014), The Gift of Participation: A Guide to Making Informed Decisions About Volunteering for a Clinical Trial, Second Edition, Center for Information and Study on Clinical Research, p. 51.
2George, PhD, Duran, RD, MS, and Norris, MD (2014); A Systematic Review of Barriers and Facilitators to Minority Research Participation Among African Americans, Latinos, Asian Americans, and Pacific Islanders, American Journal of Public Health, February 2014, Vol 104, No. 2.
3Woods, V. D., Montgomery, S. B. and Herring, R. P. (2004), Recruiting Black/African American men for research on prostate cancer prevention. Cancer, 100: 1017–1025. doi:10.1002/cncr.20029.