18.1 In Practice: Building Community Engagement for Clinical Research Response

Abstract

AbstractThis in-practice text provides examples of progressive community engagement that lays the groundwork for an emergency clinical research response in case of need. Community engagement via good participatory practice (GPP) enables sharing information and perspectives among community members, researchers, research sponsors, and other stakeholders throughout the clinical trial lifecycle. It builds and maintains relationships and partnerships between the research team and the wider community through bidirectional communication and reciprocity. Real-world examples of community engagement include the Transcrições Art Project for fostering relationships with transgender women in Rio de Janeiro, which played a role during the COVID-19 pandemic, and the CEPAD HIV testing center in Buenos Aires. Real-world examples of meaningful community involvement also include the COVID-19 Prevention Network (CoVPN), with clinical research sites in South and Central America, southern Africa, and the United States. The sites have been active in reducing misinformation and disinformation about COVID-19. In the United States, southern Africa, and South America, full-time network staff provide technical assistance and capacity building to sustain community engagement efforts at clinical research sites. GPP is vital to preparedness and requires additional attention and support if it is to be optimized for pandemic response, as shown by the examples given.