Strategies and Considerations for Forming and Managing Community Advisory Boards from Health Research with Transgender and Nonbinary Communities

Purpose: There is limited research on the use of community advisory boards (CABs) in health research with transgender and nonbinary communities. Transgender communities are navigating challenging histories of health researcher exploitation and research distrust alongside exponential research growth. We explored strategies for forming and managing CABs when conducting transgender community-informed health research. Methods: We used purposive and snowball sampling to identify key informants (KIs): research leaders, implementing staff, and community partners engaging in transgender health research. Between October 2018 and December 2020, we conducted 30 semi-structured in-depth interviews. We used coding followed byiterative thematic analysis and memoing to identify themes. Results: KIs emphasized the importance of involving CABs early in the research process and communicating transparently about their decision-making power and roles. They urged research teams to anticipate and address both multilevel (e.g., gender affirmation-related and socioeconomic) and historical (e.g., local research harms) barriers to CAB participation, and to intentionally engage groups that are historically underrepresented in research. KIs warned against tokenistic CAB models and called on researchers to show up for transgender communities beyond research goals. Research-related trainings and skills-building opportunities could equip CAB members to contribute meaningfully to research decisions, but KIs find that they are often under-planned and under-budgeted. Health Equity Implications: This study contributes to our understanding of how to engage and support CABs working on transgender health research, and how sociostructural factors shape their experiences. We offer a series of recommendations and questions researchers should consider when forming CABs for transgender health research and community-informed research broadly.