Background: The number of people who identify as transgender and/or nonbinary (TNB) is growing in the United States and North Carolina is home to the highest proportion of TNB residents in the country. For many TNB individuals, medical transition achieved through gender-affirming hormone therapy (GAHT) is essential. GAHT has been associated with improvements in quality of life and reductions in depression/suicide ideation. Clinical guidelines exist for GAHT prescribing practices, but knowledge gaps remain for ideal treatment. There is an urgent need to engage TNB individuals/stakeholders in GAHT research via patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER), allowing them to identify effects and outcomes most important to them. This project builds on the team’s expertise in PCOR/CER to ascertain GAHT-related priorities for TNB individuals and stakeholders and develop plans for future research.
Proposed Solution to the Problem: The DREAM Coalition (DC) will guide all project activities. The Coalition will equitably include TNB individuals, community organization representatives, researchers, clinicians, advocates, policy experts and a TNB engagement coordinator who will interface with the community for communications, recruitment, outreach and trust building. The DC will lead the research prioritization process (modified Delphi) via surveys, community roundtables and Coalition meetings. They hope to empower and motivate TNB patient and stakeholder partners to engage as team members while pursuing opportunities to contribute to TNB health focused PCOR/CER.
Objectives: The project’s objectives are to:
- Increase capacity among TNB patient and stakeholder partners to contribute to GAHT-specific PCOR/CER
- Identify GAHT-related PCOR/CER priorities within the TNB community
- Disseminate chosen priorities, questions and patient-reported outcome measures to TNB communities and stakeholders.
The project’s long-term objective is to build capacity to work effectively with a board that will contribute to PCOR/CER for improving the health outcomes of TNB individuals on GAHT.
Activities: DREAM series of educational trainings will focus on research, communication, community engagement and PCOR/CER. The DC will facilitate four roundtable discussions with the TNB community residing in the project team’s area of the South (i.e., North Carolina, South Carolina and Virginia), including participatory educational content and breakout sessions. The DC will discuss the priorities and ways to address them via PCOR/CER and create a toolkit for other institutions to replicate capacity-building efforts for future PCOR/CER. Additionally, the DC will develop a general PCOR/CER agenda and timeline based on identified top priorities.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include: Transform the DREAM research team by fully integrating patient and stakeholder partners and developing reciprocal relationships where all DREAM Coalition members are empowered with equal voices.
Medium-term outcomes (zero to two years post project period) include: Develop a toolkit, based on input received, guiding TNB community engagement and GAHT-specific priorities for PCOR/CER. Disseminate the toolkit to the community via partner organizations and institutional partners for replication of the engagement plan and facilitation of multisite collaboration.
Long-term outcomes (three and more years post project period) include: Promote future GAHT-specific PCOR/CER driven by the TNB community via the DREAM-ENGAGE capacity building activities, research prioritization and network building:
- List of GAHT-focused research priorities/measures considered meaningful by TNB patients/stakeholders
- Strategic patient-centered research plan for continued TNB community partnership in GAHT-related PCOR/CER
- A plan to inform and guide research priorities for the first US multi-site prospective TNB cohort study
Patient and Stakeholder Engagement Plan: TNB individuals, community members and organization representatives are the key DREAM-ENGAGE stakeholders, to be involved in all aspects of the project, including: identify research priorities, questions and outcome measures; recruit for and facilitate roundtable discussions with TNB community members; share findings with the TNB community and stakeholders; and develop a general research agenda for future PCOR/CER assessing the effects of GAHT.
Project Collaborators: DREAM-ENGAGE is a collaboration between TNB individuals, clinicians, researchers and stakeholders at Duke University, TRANS-ARC, LGBTQ Center of Durham and LGBT Center of Raleigh.