Are you a trans/non-binary community member, advocate, researcher, clinician or other stakeholder who has been invited to join TRANS-ARC by a friend or colleague? Here is some information about our work and approach.
What is TRANS-ARC?
TRANS-ARC (Transgender and Non-Binary – Allied Research Collective) is gathering a community of people who are passionate about centering trans/non-binary community and patient perspectives in research on genital gender affirming surgery (GGAS), also called bottom or lower surgery.
TRANS-ARC is led by a group of advocates, trans community members, researchers and clinicians from around the country who are dedicated to improving trans surgical care and outcomes (TRANS-ARC Steering Committee).
TRANS-ARC is supported by a PCORI (Patient-Centered Outcomes Research Institute) Engagement Award. PCORI Engagement Awards are meant to bring more patients, caregivers, clinicians, and a broader community of healthcare stakeholders together for meaningful involvement throughout the research process.
In July 2020 – June 2021, we launched a series of surveys and hosted a Virtual Summit to create research questions that center community voices.
What is the goal of TRANS-ARC, and why was it created?
We are focused on genital gender-affirming surgeries (GGAS) such as phalloplasty, metoidioplasty, vaginoplasty and vulvoplasty, and on better understanding how these surgeries affect the lives of the people getting surgery, their support system, and their community.
Our goal is to find unanswered questions about:
Barriers to care
Experiences of genital gender-affirming surgery (GGAS) from the perspective of trans/non-binary people
Outcomes of genital gender-affirming surgery (GGAS) from the perspective of trans/non-binary people
We don't know enough about the views of the community as far as surgical priorities and outcomes. Researchers should investigate questions that are important to people from the trans/non-binary community.
Our goal is to approach research on GGAS in a different way than it has been in the past. We aim to bring the views and voices of trans/non-binary people and people of color to the forefront.
We want to create a safe space for discussion as we look for the unanswered questions about GGAS that need more research.
We aim to ensure that what matters to the trans/non-binary community becomes well known to those who fund health research.
What does involvement in TRANS-ARC look like?
At this time, our first phase of creating research questions is complete. However, here are ways of getting involved:
- Share results of the TRANS-ARC Summit with your community
- Let us know you’re interested in participating in future TRANS-ARC collaborations!
Who is involved?
We are prioritizing representation of trans/non-binary & gender diverse community members!
We are also including the input of other “stakeholders,” or people who are invested in gender-affirming surgery outcomes and research. This includes:
Surgeons and other clinicians, healthcare workers who care for TGNB people
Payers (such as state Medicaid representatives)
If there are community members and other stakeholders whose perspectives you think would be valuable to include, please let us know.
What was done with the survey results?
After the surveys were completed, our TRANS-ARC Steering Committee reviewed the questions and found common themes and topics.
During the Summit we reviewed the survey results in small discussion groups and created a list of research questions that are meaningful to the community.
We are now sharing the results of this meeting (the research topic list and collaboration strategies) widely with the trans/non-binary community, researchers, research funders, and the public.