Grumbach Kevin, Cottler Linda B, Brown Jen, LeSarre Monique, Gonzalez-Fisher Ricardo F, Williams Carla D, Michener J Lloyd, Nease Donald E, Tandon Darius, Varma Deepthi S, Eder Milton
Department of Family and Community Medicine and Clinical and Translational Science Institute, University of California, San Francisco, CA, USA.
Department of Epidemiology and Clinical and Translational Science Institute, University of Florida, Gainesville, FL, USA.
J Clin Transl Sci. 2021 Feb 5;5(1):e95. doi: 10.1017/cts.2021.8.
Efforts to move community engagement in research from marginalized to mainstream include the NIH requiring community engagement programs in all Clinical and Translational Science Awards (CTSAs). However, the COVID-19 pandemic has exposed how little these efforts have changed the dominant culture of clinical research. When faced with the urgent need to generate knowledge about prevention and treatment of the novel coronavirus, researchers largely neglected to involve community stakeholders early in the research process. This failure cannot be divorced from the broader context of systemic racism in the US that has contributed to Black, Indigenous, and People of Color (BIPOC) communities bearing a disproportionate toll from COVID-19, being underrepresented in COVID-19 clinical trials, and expressing greater hesitancy about COVID-19 vaccination. We call on research funders and research institutions to take decisive action to make community engagement obligatory, not optional, in all clinical and translational research and to center BIPOC communities in this process. Recommended actions include funding agencies requiring all research proposals involving human participants to include a community engagement plan, providing adequate funding to support ongoing community engagement, including community stakeholders in agency governance and proposal reviews, promoting racial and ethnic diversity in the research workforce, and making a course in community engaged research a requirement for Masters of Clinical Research curricula.
将社区参与研究从边缘化转变为主流的努力包括美国国立卫生研究院（NIH）要求所有临床和转化科学奖（CTSA）都设立社区参与项目。然而，新冠疫情暴露了这些努力在多大程度上未能改变临床研究的主导文化。面对迫切需要生成有关新型冠状病毒预防和治疗知识的需求时，研究人员在很大程度上忽视了在研究过程早期让社区利益相关者参与进来。这种失败与美国系统性种族主义的更广泛背景分不开，系统性种族主义导致黑人、原住民和有色人种（BIPOC）社区在新冠疫情中承受了不成比例的损失，在新冠临床试验中的代表性不足，并且对新冠疫苗接种表现出更大的犹豫。我们呼吁研究资助者和研究机构采取果断行动，使社区参与在所有临床和转化研究中成为必须而非可有可无的，并在此过程中将BIPOC社区置于中心位置。建议采取的行动包括资助机构要求所有涉及人类参与者的研究提案都包含社区参与计划，提供充足资金以支持持续的社区参与，让社区利益相关者参与机构治理和提案评审，促进研究人员队伍中的种族和族裔多样性，以及将社区参与研究课程作为临床研究硕士课程的一项要求。
