Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective

Overview

Journal J Community Health

Publisher Springer

Specialty Public Health

Date 2016 Nov 5

PMID 27812847

Citations 83

Authors

Jennifer Cunningham Erves

Tilicia L Mayo-Gamble

Alecia Malin-Fair

Alaina Boyer

Yvonne Joosten

Yolanda C Vaughn

Lisa Sherden

Patrick Luther

Stephania Miller

Consuelo H Wilkins

Affiliations

Soon will be listed here.

Abstract

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.

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