Community engagement

Engaging patients, the public, and community stakeholders throughout the clinical trial lifecycle – from design to dissemination – promotes trust, strengthens respect, empowers participants, drives ethical research conduct, improves scientific outcomes, and facilitates the uptake of findings. It is known to improve trial relevance, feasibility, and acceptance within the community.

This knowledge portal uses the term community engagement to refer to the conduct of research in collaboration with members of the public. Other terms used for this include: patient and public involvement and engagement, and consumer engagement.

During the first WHO Global Clinical Trial Forum held in Geneva (Nov 20–21, 2023), the engagement of patients, the public, and communities for clinical trials emerged as a priority area for strengthening the global ecosystem. Key stakeholders, such as researchers, funders, research ethics committees, and regulators must be held accountable for embedding patients, the public and communities in the clinical trial lifecycle.

Community engagement in clinical trials, however, currently remains limited, or poorly reported or evaluated. Further work is being conducted to address these issues. The EQUATOR network (an international initiative aimed at tackling the problems of inadequate reporting systematically and on a global scale) has established the GRIPP 2 checklist to support the transparent reporting of community engagement in research.