Ethical engagement in Community Advisory Boards for people who use drugs

• In Event: 50658 - Whose Story and Whose Project?: Ethical Issues and Considerations in Research Collaborations

Abstract

Community Advisory Boards (CABs) are frequently recommended for Community Engaged Research (CER) studies on HIV/Drug Use. This paper seeks to understand ethical engagement on CABs for illicit drug use research from the perspective of people who have served as study population representatives due to their lived experience. This study draws on 36 semi-structured one-hour interviews conducted from January 2024 to November 2024 via Zoom or phone with people who have served as study population representatives on CABs for illicit opioid or stimulant use. We examine how CAB members perceive the CAB structure, intra-member CAB dynamics, and research team guidance to influence their engagement in CAB processes. The CAB venue and composition (virtual or in-person meetings, study population only or mixed composition) influenced perceptions of levels of engagement through issues such as drug use disclosure and cohesion. Meeting processes for knowledge exchange, decision-making, and participation expectations influenced engagement by encouraging or discouraging discussion and reinforcing members’ perceptions of respect and support. Intra-CAB member dynamics fostered engagement through learning from one another, sharing experiences, engaging in structured decision-making processes, and supporting each other’s growth, reinforcing their roles as valued contributors. Research staff facilitated engagement by guiding structured low-threshold meetings, respecting members, ensuring people’s voices were heard, providing recognition for input, sharing results and regular updates, and fostering a non-judgmental environment. Barriers to perceptions of ethical engagement included CAB conflict, didactic meetings, and perceptions of tokenization. Examining study population representatives’ perspectives on engagement practices can improve CAB input and, thus, effectiveness and increase CER benefits of CABs for participants, researchers, and communities.

Authors

• Sarah Brothers, Pennsylvania State University

• Carlos Gonzales, Pennsylvania State University