TransFORWARD – Improving Transgender Lives’ 10-year goal is to reduce suicidality among transgender Texans. The Williams Institute estimates 125,400 transgender adults live in Texas – 1 in 150 Texas adults identify as a transgender person. Applying William’s percentage to 2020 state population estimates takes this number over 200,000 Texas adults.
Among the many issues faced by transgender Texans, none is more alarming than the high incidence of suicide attempts. According to the National Transgender Survey, more than 40% of respondent’s report having attempted suicide. How do we begin to develop strategies to reduce suicide attempts and suicide ideation?
Focused on Transgender Research
Engaging patients, caregivers, and other healthcare stakeholders as partners in planning, conducting, and disseminating research is a promising way to improve clinical decision-making and outcomes. Many researchers, patients, and other stakeholders, however, lack clarity about when and how to engage partners within the clinical research process. To address the need for guidance on creating meaningful stakeholder partnerships in patient-centered clinical comparative effectiveness research, the Patient-Centered Outcomes Research Institute (PCORI) developed the PCORI Engagement Rubric.
TransFORWARD: A Statewide Transgender-Powered Research Collaborative in Texas was awarded a two-year contract by the Patient-Centered Outcomes Research Institute (PCORI) in August 2018. Our primary objective is using the Engagement Rubric to create eight regional research hubs across the state. We connect and engage transgender people with clinicians and research investigators.
Bringing people together
Our Regional Summits brought together 226 people to identify transgender-powered research priorities. We explored why and how we can enroll people in The PRIDE Study or clinical studies. We created a “safe space” to listen and learn from transgender people. We learned that transgender people are willing to participate in patient-centered outcomes research. We also identified barriers to participating in research and how to improve enrollment and retention.
Our Regional Summit results were not unsurprising. The 2015 US Transgender Survey found 78% of respondents wanted to receive gender affirming hormone therapy at some point in their life, but only 49% of respondents have ever received it.
Ninety-two percent of those who have ever received hormone therapy were currently still receiving it, representing 44% of all respondents.
Results from our travels across Texas confirmed the #1 medical issue to address is gender affirming Hormone Replacement Therapy (HRT). HRT was second in identifying the #2 medical issue.
But…it’s not just HRT that is important. Our eight Regional Summits identified a long list of transgender-focused research questions that need to be addressed. Gender affirming HRT is just the start. We have a lot of work to do.
Next Steps . . .
State level steps (February/March, 2020):
- Develop a survey to clinicians providing gender affirming Hormone Replacement Therapy (HRT). Describe existing demographic profile of existing patients. Identify potential partner(s).
- Identify and report on what socioeconomic factors impact success for transgender people undergoing and subsequent to both social and medical transitions.
- Discuss embedding a hotline for feedback in the future.
- Develop a process with The PRIDE Study to submit retrospective research requests using Annual Survey data.
Region level steps (February/March, 2020):
- Share summary information from the eight Regional Summit with participants through conference calls or video meetings.
- Establish achievable region enrollment goals for The PRIDE Study and to better understand how to enroll new participants in the study and prospectively clinical studies.
- Invite Region Summit participants into TransCONNECT (online community portal with Facebook/Twitter like interface) to take part in state and region discussions.
- Prototype new forms of transgender incentives, especially in working with transgender support groups.