Background: Gender-affirming surgical care has been associated with improved mental health and quality of life among transgender/gender non-binary (TGNB) people. Yet, how to best measure the benefits of gender-affirming surgery remains unknown, and existing research rarely incorporates patient perspectives. In genital gender-affirming surgery (GGAS), where surgical options are numerous and operative risk may be high, understanding patient priorities is critical. This project addresses key gaps in comparative effectiveness research (CER) on GGAS: identifying individuals most likely to benefit from GGAS, understanding how to optimize perioperative care and outcomes, and identifying outcomes most important to patients considering GGAS.
Proposed Solution: The Transgender/Non-Binary Surgery - Allied Research Collective (TRANS-ARC) aims to develop a national strategic plan for facilitating patient-centered GGAS research by assembling a multi-stakeholder team and hosting a summit at Oregon Health & Science University (OHSU) designed to identify and prioritize patient-centered research activities. TRANS-ARC is led by clinical and community leaders in GGAS and health services researchers from OHSU and nationwide.
- Recruitment of a multi-stakeholder research collective
- Convening a multi-stakeholder research summit
- Research question generation and prioritization
The long-term objective is to conduct patient-centered CER to improve health outcomes of TGNB individuals considering GGAS by building a multi-stakeholder network for research implementation.
Activities: TRANS-ARC stakeholder recruitment will prioritize diverse, nationally representative TGNB community members, as well as social workers, clinicians, researchers, advocacy leaders, state Medicaid representatives, and industry liaisons. The TRANS-ARC Summit on PCOR in GGAS will include participatory educational content, a patient panel, and breakout discussions. The project team will solicit and sort research questions from participants through a premeeting survey. At the TRANS-ARC Summit, participants will rate the priority of research topics and identify barriers to engagement in GGAS research and dissemination strategies. The team will distribute prioritized research topics to the TGNB research community and funders.
Outcomes and Outputs:
- Creation of a prioritized research list considered to be meaningful by TGNB patients and the community
- Creation of a strategic patient-centered research plan for continued TGNB community partnership in PCOR/CER, identifying barriers to patient engagement, developing a research dissemination plan, and determining lessons learned from collaborative building
- Development of an engaged national PCOR collective from a subset of TRANS-ARC participants, focused on studying outcomes of GGAS
Patient and Stakeholder Engagement Plan: TGNB patients and community members are the key TRANS-ARC stakeholders, involved in all aspects of the project from proposal and agenda development, to research question identification and prioritization, synthesis of meeting results, and ultimately dissemination of the prioritized research topics and strategic plan to peers and funders.
Project Collaborators: TRANS-ARC relies on collaboration with steering committee representatives from organizations including UCSF Transgender Health, NYU Langone, University of North Carolina in Chapel Hill, US Professional Association for Transgender Health, and multiple community-based programs.
Project Resource: Lay Conference Summary