Epidemiol Rev. 2022 Dec 21;44(1):78-86. doi: 10.1093/epirev/mxac007.
The COVID-19 pandemic revealed weaknesses in the public health infrastructure of the United States, including persistent barriers to engaging marginalized communities toward inclusion in clinical research, including trials. Inclusive participation in clinical trials is crucial for promoting vaccine confidence, public trust, and addressing disparate health outcomes. A long-standing body of literature describes the value of community-based participatory research in increasing marginalized community participation in research. Community-based participatory research emphasizes shared leadership with community members in all phases of the research process, including in the planning and implementation, interpretation, and dissemination. Shared leadership between academic and industry with marginalized communities can assist with inclusive participation in vaccine trials and increase public trust in the development of the vaccines and other therapies used during public emergencies. Nevertheless, epidemiologic and clinical research do not yet have a strong culture of community partnership in the scientific process, which takes time to build and therefore may be difficult to develop and rapidly scale to respond to the pandemic. We outline practices that contribute to a lack of inclusive participation and suggest steps that trialists and other researchers can take to increase marginalized communities' participation in research. Practices include planning for community engagement during the planning and recruitment phases, having regular dialogues with communities about their priorities, supporting them throughout a study, and navigating complex structural determinants of health. Additionally, we discuss how research institutions can support inclusive practices by reexamining their policies to increase participation in clinical trials and instilling institutional trustworthiness.
COVID-19 大流行暴露了美国公共卫生基础设施的弱点,包括在让边缘化社区参与临床研究(包括试验)方面持续存在的障碍。包容性地参与临床试验对于增强疫苗信心、公众信任和解决健康结果差异至关重要。大量文献描述了社区为基础的参与式研究在增加边缘化社区参与研究方面的价值。社区为基础的参与式研究强调在研究过程的所有阶段,包括规划和实施、解释和传播,与社区成员共同分担领导责任。学术和产业与边缘化社区之间的共同领导可以帮助他们更全面地参与疫苗试验,并增加公众对疫苗和其他在公共紧急情况下使用的疗法的信任。然而,流行病学和临床研究在科学过程中尚未形成社区伙伴关系的强烈文化,这需要时间来建立,因此可能难以快速发展和扩大规模以应对这一大流行。我们概述了导致包容性参与不足的实践,并提出了试验人员和其他研究人员可以采取的措施来增加边缘化社区参与研究的措施。实践包括在规划和招募阶段就社区参与进行规划,定期与社区就其优先事项进行对话,在整个研究过程中为他们提供支持,并解决健康的复杂结构决定因素。此外,我们还讨论了研究机构如何通过重新审视其增加临床试验参与的政策和树立机构可信度来支持包容性实践。