Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective.
Engaging underrepresented groups in outcomes research is a public health priority for reducing health and health care disparities; yet, engaging these groups is challenging. Failure to involve these underrepresented populations in research further exacerbates these disparities. This article presents the health and research priorities of diverse groups of underrepresented populations in biomedical research, their concerns for participating in research, and strategies to engage them in their healthcare and research studies. Eleven community listening sessions, ranging from 7 to 13 community members each (N = 117), representing racial/ethnic minority, economically disadvantaged (e.g., uninsured), and hearing impaired communities. We used an inductive, qualitative content analysis approach to analyze the data for emerging themes. We identified the following themes: Uncertainties of underrepresented populations regarding research participation; Ineffective communication about research opportunities and research findings; Research on primary care and prevention are priorities for underrepresented populations in research; and Research teams need training in cultural competence and humility. Underrepresented groups provided research priorities, concerns, and strategies to engage them in their healthcare and in research studies. Findings from this study could facilitate improvement of research participation among underrepresented groups, ultimately reducing health disparities and improving quality of life among groups commonly omitted from research recruitment and participation.
Department of Internal Medicine, Meharry Medical College, Nashville, TN, 37208, USA.
Jennifer Cunningham
JC
Erves
Department of Family and Community Medicine, Meharry Medical College, Nashville, TN, 37208, USA.
Tilicia L
TL
Mayo-Gamble
Vanderbilt Institute for Clinical Translational Research (VICTR), Vanderbilt University Medical Center, Nashville, TN, 37203, USA.
Alecia
A
Malin-Fair
National Health Care for the Homeless Council, Nashville, TN, USA.
Alaina
A
Boyer
Vanderbilt University School of Medicine and Vanderbilt Institute for Medicine and Public Health, Nashville, TN, 37203, USA.
Yvonne
Y
Joosten
Meharry-Vanderbilt Alliance and Vanderbilt University, Nashville, TN, 37208, USA.
Yolanda C
YC
Vaughn
Johns Hopkins Center to Reduce Cancer Disparities, Baltimore, MD, 21287, USA.
Lisa
L
Sherden
Nashville CARES, Nashville, TN, 37204, USA.
Patrick
P
Luther
Department of Surgery, Meharry Medical College, Nashville, TN, 37208, USA.
Stephania
S
Miller
Meharry-Vanderbilt Alliance, Vanderbilt University Medical Center, Meharry Medical College, 1005 Dr. D.B. Todd Jr. Blvd., BioMedical Building, Nashville, TN, 37208, USA. consuelo.h.wilkins@vanderbilt.edu.
Consuelo H
CH
Wilkins
D035843:Biomedical Research / Q000592:standards*; D054521:Cultural Competency; D054625:Healthcare Disparities; D006801:Humans; D008913:Minority Groups
Community engagement; Health and healthcare disparities; Research studies; Underrepresented populations