18 Good Participatory Practice: Social Mobilization, Communications, and Community Engagement

Abstract

AbstractGood participatory practice (GPP) is a set of procedures to ensure all stakeholders in a clinical trial have a voice in the research process. It is rooted in the ethical imperative to treat people as ends in themselves, rather than mere means. It is also a necessity for research programs to engender participant and community trust in clinical research and ultimately in the safety and efficacy of medical countermeasures (MCMs) validated by clinical trials. GPP requires systematically reaching out to all stakeholders who are affected by or can influence the research in question, listening to them, and making changes to the way the trial team interacts with stakeholders if needed. Genuine dialogue with stakeholders about the principles of clinical research and why it is being conducted in their community is the basic principle. As well as GPP, this sort of engagement is known by different names in various places: in sub-Saharan Africa, it is often referred to as social mobilization, communication, and community engagement (SMC).While GPP/SMC should be part of all clinical research efforts, it must be part of an emergency research response. When populations are under stress from an emerging infectious disease and its disruptive social consequences, their active participation in the research; their understanding of its purpose, goals, and process; and their confidence in research integrity, ethics, and oversight are pragmatic as well as normative requirements. Without community backing, a research program may not be feasible, and if the research identifies an MCM as safe and efficacious but it is not used for lack of confidence, then it does little good. GPP must be tailored to circumstances, including the pathogen causing the outbreak, the dynamics of the disease, and the type of study. It should be responsive to feedback from stakeholders so as to refine messaging content and format, adjust procedures, and effectively communicate both successes and obstacles. Fruitful dialogue requires understanding the communities, languages, and cultures involved. Effective GPP strengthens those communities and other stakeholders and contributes to enhanced healthcare and research capacity. To illustrate these themes, this chapter explores some common patterns evident in different times and places, such as the 2014–2016 Ebola outbreak in West Africa and the coronavirus disease 2019 (COVID-19) epidemic.