Byiringiro Samuel, Bellinger Grace C, Mezu Akunna, Wong Erin, Tomiwa Tosin, Vazquez Monica Guerrero, Foster Adriana, Sheikhattari Payam, Himmelfarb Cheryl R, Miller Hailey N
School of Nursing, Johns Hopkins University, Baltimore, Maryland, USA.
School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Health Expect. 2025 Aug;28(4):e70348. doi: 10.1111/hex.70348.
Clinical research is a cornerstone to medical innovation, yet Black/African American and Latino populations are underrepresented in clinical research, contributing to poorer health outcomes.
This study examined perspectives on clinical research recruitment and engagement among historically underrepresented populations.
Focus group discussions (FGDs) were conducted with 59 community members and leaders from Baltimore, Maryland, who identified with groups underrepresented in research. Participants were recruited via a research registry, community outreach, and word-of-mouth referrals. Each FGD included 8-14 participants and was conducted in English or Spanish. Thematic analysis was applied following a systematic coding process.
Participants included 45 (76%) community members and 14 (24%) community leaders, with 44 (75%) identifying as women, 19 (32%) as Hispanic, and 40 (68%) as Black or African American. We identified key barriers to research participation and community-informed solutions to those barriers including: establishing community relationships to foster trust, sustaining engagement through active and transparent communication, boosting research visibility and awareness through multimodal outreach and messaging, and promoting accessibility with person-centered accommodations. Further, we demonstrate how the proposed recommendations would help enhance the relevance, rigor, and reach of clinical research projects.
Underrepresentation of Black or African American and Latino individuals in research hinders health equity. Findings suggest that researchers should adopt tailored strategies aligned with community needs to foster inclusive engagement.
The design, implementation, and interpretation of results were informed by a Community Research Council. The research council is part of a larger project which is currently implementing the recommendations from these focus group discussions. Further, research participants received a brief synopsis of the discussion for any additional feedback or comment before implementation of recommendations.
临床研究是医学创新的基石,但黑人/非裔美国人和拉丁裔人群在临床研究中的代表性不足,导致健康结果较差。
本研究探讨了历史上代表性不足人群对临床研究招募和参与的看法。
对来自马里兰州巴尔的摩的59名社区成员和领袖进行了焦点小组讨论(FGD),他们认同在研究中代表性不足的群体。参与者通过研究登记册、社区宣传和口碑推荐招募。每个焦点小组讨论包括8-14名参与者,以英语或西班牙语进行。采用系统编码过程进行主题分析。
参与者包括45名(76%)社区成员和14名(24%)社区领袖,其中44名(75%)为女性,19名(32%)为西班牙裔,40名(68%)为黑人或非裔美国人。我们确定了研究参与的关键障碍以及针对这些障碍的基于社区的解决方案,包括:建立社区关系以促进信任,通过积极和透明的沟通维持参与,通过多模式宣传和信息传递提高研究的可见性和认知度,以及通过以人为本的便利措施提高可及性。此外,我们展示了所提出的建议将如何有助于提高临床研究项目的相关性、严谨性和覆盖面。
黑人或非裔美国人和拉丁裔个体在研究中的代表性不足阻碍了健康公平。研究结果表明,研究人员应采用与社区需求相一致的定制策略,以促进包容性参与。
结果的设计、实施和解释由社区研究委员会提供信息。该研究委员会是一个更大项目的一部分,该项目目前正在实施这些焦点小组讨论的建议。此外,研究参与者在实施建议之前收到了讨论的简要摘要,以获取任何额外的反馈或评论。