Project Summary
Background: Sexual and gender minorities fare worse in the healthcare system and have poorer health outcomes than the general population. Transgender people experience inequities that stem from discrimination, stigma, harassment, poverty, and lack of transgender-specific health information.
The Williams Institute estimates 1.4 million adults in the United States identify as transgender, including 124,500 Texans. Gaps in research compound the experience of many transgender people in being ignored or maligned by medicine and medical research. The PRIDE Study is the first large-scale, long-term health study of people who identify as LGBTQ designed to address research gaps.
Proposed Solution: TransFORWARD works to establish trust in the transgender community. The goal is to connect transgender people with clinicians and researchers, ensuring medical care for transgender people is informed by evidence-based data.
Objectives:
- Create a 28-person Research Engagement Advisory Council (REAC) to lead collaborative network development
- Establish a network spanning all eight Texas regions using technology to reduce distance, time zone, and location differences. Train 10 transgender people and 10 medical providers/researchers in each region to increase research capacity
- Host a capstone summit bringing together regional representatives to continue engagement and identify best practices, lessons learned, and tools for continued dissemination of research opportunities and results
Activities: Transgender Patient-Powered Engagement - PCOR/CER Research Capacity Building
- Recruit region leadership
- Train 20 regional participants
- Identify partners and venues
- Establish REAC and network
- Develop trust-building coffee sessions, listening sessions
- Host capstone summit
- Finalize research capacity building outcomes
- Continuously improve in-person workshops
- Develop regional sustainability plans
- Prioritize regional workshops
- Ensure 2,500 transgender people are recruited into the PRIDE Study
- Continuously disseminate research results
- Develop evaluation instruments
- Submit at least two ancillary research studies to the PRIDE Study
Outcomes:
- Develop a culture of patient-centeredness in research and meaningful partnerships
- Secure one transgender and one clinician/researcher stakeholder in each of the eight regions to lead state and regional efforts
- Increase the number of transgender people taking part in The PRIDE Study to 2,500 Texans
- Increase the number of engaged transgender people/family members, clinicians, and researchers in each of the eight regions participating in knowledge discovery, identifying, and disseminating research
- Submit at least two ancillary research studies for PRIDE Study review
- Measure the degree to which participants apply what they learn during online and in-person training and the degree to which targeted near-term outcomes occur as a result of the training
- Develop a sustainability plan for the statewide network
Patient and Stakeholder Engagement Plan: “Nothing about us without us,” guides all project phases. One project co-lead, a transgender man, will liaise with the transgender community. A second project co-lead, a transgender-competent surgeon, will liaise with the clinician/researcher community. A modified key stakeholder matrix is used to balance stakeholder perspectives ensuring ethnicity, age, income, education, and engagement perspectives are considered.
Collaborators:
- Equality Texas Foundation
- PRIDEnet
Research Engagement Advisory Council Website
Project Details
*Angela Sturm, MD, and Lou Weaver were originally other Project Leads on this study.