It should not require a pandemic to make community engagement in research leadership essential, not optional

Abstract

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.

Racial and Ethnic Diversity in SARS-CoV-2 Vaccine Clinical Trials Conducted in the United States

“…An early engagement of the community is essential when recruiting subjects from historically marginalized communities, due to both distrust from racism and lack of diversity among members of many research teams [36][37][38]. One example of community engagement programs includes the NIH Community Engagement Alliance Against COVID-19 Disparities which aims to increase community engagement, diversity, and inclusion in these communities [39]. Another program incorporates a Community Advisory Board (CAB), a diverse group of volunteers who provide investigators and their study teams with community input into study design and local procedures to ensure both diversity and feasibility of the study.…”

Virtual recruitment and participant engagement for substance use research during a pandemic

“…These deliberate actions early in the research process may have helped cultivate and maintain a mutually beneficial alliance with the community. Developing equitable partnerships help ensure that scientific, as well as societal and local relevance, is present [22,23].…”

Reviewing fair subject selection considerations for the unique case of post sequelae COVID-19 translational studies

“…16 According to an exploratory mixed-methods survey (N=279) and interviews (n=26) at the Clinical and Translational Science Award Institute at the University of Wisconsin, researchers have an abstract belief in the importance of diversity but most do not consider it an important goal in their specific research projects. 48,49 Although community engagement and partnerships https://doi.org/10.1017/cts.2022.425 Published online by Cambridge University Press are integrated in CTSAs, this is still not viewed as mainstream nor obligatory in clinical research, 50 although mechanisms such as the Community Engagement Studio developed by the Vanderbilt-Meharry CTSA are currently being more widely adopted. 51 There is also a heightened awareness mainly in dissemination and implementation of health science that health equity concerns should minimally not be increased by research.…”