Diversity in Research Participation: why it's important

Developed with contributions from Nynikka Palmer, DrPH, MPH, Assistant Professor, UCSF School of Medicine, and Esteban Burchard, MD, MPH Professor, UCSF School of Pharmacy.

References from video

Participants in research should reflect the diversity of our culture and conditions, taking into account race, ethnicity, gender, age, etc. The lack of diversity among research participants has serious ethical and research consequences. This includes impeding our ability to generalize study results, make medical advancements of effective therapies, and it prevents some populations from experiencing the benefits of research innovations and receipt of high quality care.

Enrolling an adequate number of participants in research is a pervasive problem. If studies do not meet their target enrollment in the allotted time period, they may not complete their scientific goals and make take a significant financial loss after investing heavily in study start-up. In addition, there are ethical concerns because if researchers cannot complete the study due to under enrollment, they may not be able to carry out the study aims outlined in the participant consent form. A critical piece of the recruitment problem is a lack of diversity among research participants.

In the Revitalization Act of 1993 and additional amendments, the NIH mandated the appropriate inclusion of minorities and women in all NIH-funded research and stated clearly that, “since a primary aim of research is to provide scientific evidence leading to a change in health policy or standard of care, it is imperative to determine whether the intervention or therapy being studied affects women or men or members of minority groups and their subpopulations differently.”

Clinical research has shown that patients’ reactions to medical treatments vary depending on race, ethnicity and gender.  For example, up to 75% of Pacific Islanders are unable to convert an antiplatelet drug into its active form and therefore are at higher risk for adverse outcomes following angioplasty. (Burchard, 2015). If the study population had not included diverse participants, this difference would not have been discovered and patient care could have effected.

Despite national efforts led by the NIH and the FDA, research participation remains low for racial/ethnic minorities and other underrepresented groups such as women, low socioeconomic status populations, and older adults.  But as a researcher, you can make an impact. When study participants reflect the rich diversity in our communities, studies can generate information about causes of and strategies to address differences, including policies and practices to eliminate disparities

Want to learn more? Here are some resources to help get started: 

Report: Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups from the National Academies of Science, Engineering and Medicine.

Webcast: Recruitment of Underrepresented Study PopulationsThis seminar featured speakers and panelists discussing the importance of including underrepresented populations in research, with tips and real examples of successful approaches and lessons learned. This event was co-sponsored by the CTSI Participant Recruitment Program and School of Medicine Differences Matter Research Action Group

CTSI Consultation Services offers consultations on all aspects of recruitment—including recruitment of underrepresented populations. The first hour is free! Visit consult.ucsf.edu to put in a request.

CTSI Research Action Group for Equity (RAGE)  provides support and infrastructure for UCSF researchers to diversify their study populations. Consultations are available via Consultation Services.

Tips from research teams on how to create strategies to include underrepresented populations in their research. 

UCSF IRB Guide to Translating Study Documents  provides guidance on translating study materials, and includes a list of translation companies.

Free Plain language consultations to help ensure your research communications are readable, understandable, and actionable. The consultation is free and easy and can be done completely over email. At the end of the consultation you will receive a plain language summary of your study with easy-to-understand phrases that you can use in your recruitment materials.

Recruitment materials image swap. Do the images in your recruitment materials reflect the diversity of the population you are trying to recruit? PRP is offering free stock images to promote diversity in recruitment materials.