Existing research demonstrates striking health disparities among transgender and gender nonconforming (TGNC) individuals when compared to cis lesbian, gay, bisexual (LGB), and/or cis heterosexual peers. Recent reports show such disparities are amplified among TGNC people of color (POC) when compared to white TGNC individuals, highlighting the relationship of multiple and intersecting identities with regard to health equity and outcomes. While the field of transgender health research has experienced substantial growth in recent years, significant gaps in the literature remain.
To date, the majority of TGNC health research has relied on convenience sampling, severely limiting generalizability of results. In fact, the only nationwide randomly collected dataset that includes sexual orientation and gender identity data is the Behavioral Risk Factor Surveillance System. While HIV-specific and LGBTQ research networks, such as Community Health Applied Research Network (CHARN), support some areas of LGBTQ research, there is little infrastructure to support TGNC health topics outside of HIV. Despite problematic and complex gaps in research, TGNC people are frequently excluded from participation in research design, development, implementation, and dissemination.
Howard Brown Health proposes the formation of the TGNC Research Advisory Network in order to support the development of patient-centered TGNC health research projects and ensure that TGNC community members actively contribute to all stages of the research process. The network will utilize two strategies to achieve this goal: conduct a total of eight focus groups with TGNC patients across four cities to identify community priorities and create a network of patient-centered outcomes research (PCOR)-trained stakeholders to support the development of TGNC-centered research.
To facilitate engagement and ensure diverse perspectives and contexts are considered, Howard Brown Health will partner with three additional federally qualified health centers (FQHCs) that specialize in LGBTQ health: Whitman-Walker Health in the District of Columbia, the LA LGBT Center in Los Angeles, and Legacy Community Health in Houston. The network will be comprised of three distinct types of stakeholders from each FQHC:
- Two TGNC patients, representative of the diverse spectrum of the TGNC community
- One researcher invested in building TGNC PCOR
- One clinician specializing in TGNC health care
The ultimate goal of the network is to facilitate development of TGNC PCOR research by involving community members, researchers, and clinicians as equal partners.
Short-term outcomes include:
- The network will be a sustainable entity representative of the diverse spectrum of stakeholders
- Community network members will build capacity in applying experience-based expertise to inform research design
- Academic and clinical network members will expand their understanding of patient critiques, priorities, barriers, and facilitators surrounding research
- All network members will develop expertise in PCOR and community based participatory research methods that will inform future network activity, as well as inform research activities at members’ home organizations
Long-term outcomes include: publishing and disseminating patient-centered research priorities in transgender health; the network will actively pursue future PCOR proposals in areas identified by the community; and patient-led research developed through the network’s activities will result in the distribution of meaningful health information.