From presence to participation: Ethical engagement in community advisory boards for drug use research

Community Advisory Boards (CABs) are frequently recommended for community-engaged research. They are intended to incorporate the experiential knowledge of people most affected by research. However, CABs often fail to achieve these participatory ideals. Increasingly, people with lived or living experience of stigmatized health-related issues serve on CABs as study population representatives. Yet their perspectives on ethical engagement remain underexamined. We define ethical engagement as the epistemic, relational, and structural conditions under which members perceive their experiential knowledge as recognized, and their involvement as free from stigma, judgment, and tokenization. Drawing on 36 semi-structured interviews with people who served as study population representatives on NIH-funded CABs for illicit drug use research, we explore three themes central to ethical engagement: CAB structure, intra-member dynamics, and research team practices. CAB structure, including meeting format, composition, and decision-making processes, shaped engagement by influencing members' sense of inclusion and comfort in disclosing drug use. Intra-member dynamics fostered engagement through peer support and informal mentorship, reinforcing members' roles as valued contributors. Research teams facilitated engagement through structured low-threshold meetings, explicit recognition of contributions, transparency about how input shaped research, shared leadership, and nonjudgmental environments. Barriers to ethical engagement included unaddressed conflict, didactic meetings that limited input, perceptions of tokenization, and drug use stigma, which made some members hesitant to disclose current use. Examining study population representatives' perspectives can improve CAB effectiveness by ensuring that representatives are ethically engaged, not just present, while acknowledging the structural constraints and power imbalances that limit ethical engagement.