Community engagement as a research ethics obligation

Themes | Subthemes | Tags: Global health ethics | Community engagement
Funding support:  None
Duration: June 18 – Nov 2019
Team:  Sunita Sheel (in individual capacity) worked with Emma Z.L. Richardson E Z L., Bandewar SVS., Boulanger RF., Mehta R., Lin T., Vincent R., Molyneux S., Goldstone A., Lavery JV.
Product/s: A paper titled ‘Addressing diversity and complexity in the community engagement literature: The rationale for a realist review [version 1; peer review: awaiting peer review] in Wellcome Open Research.  Jan 2020.

Overview: Community engagement (CE) is increasingly recognized as an integral aspect of global health and global development research, building on early efforts by non-governmental organizations and community-based organizations to enhance the impact of their work through participatory and collaborative methods. Support for CE activities in biomedical research budgets began in 1990 when the National Institute of Allergy and Infectious Diseases (NIAID) began to fund Community Advisory Boards (CAB) for its HIV prevention trials. The Bill & Melinda Gates Foundation and the Wellcome Trust have also supported CE strategies for their investments and research on CE. Most recently, the World Health Organization (WHO), following the 2015 Ebola outbreak, has formally incorporated community engagement into its International Health Regulations. Many major research initiatives now include community engagement activities, but clarity about the goals of CE and the understanding of how to achieve them remains underdeveloped. As CE continues to gain standing in the eyes of funders and researchers in global health and global development, there is increasing urgency to clarify its core elements and the mechanisms through which it produces the relevant ethical and practical outcomes. An obvious step in this direction is some form of systematic review of the CE literature. In this research note, we describe a realist synthesis that we are undertaking to inform our understanding of CE. First, we share our experiences with an unpublished literature review, which contributed to our conviction of the need for a realist review. We then detail some of the challenges and potential benefits of a realist synthesis and our current work. [From ‘Introduction’ section of the paper].

Past contributions: We have done extensive work in this area since 2000, and more systematically from 2006 onwards.