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 for July 2020 – June 2021. 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.
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?
There are several ways to get involved - you are welcome to participate in one or all of these ways!
- Answer 2 short surveys that will ask you for questions about GGAS that you think need to be answered by research. (Surveys are now closed)
- Participate in a 2-day virtual meeting (TRANS-ARC Summit) in March 12 & 13, 2021
Summit participation is limited to 75 people recruited by the TRANS-ARC Steering Committee. However, the survey is open to all, and Summit results will be shared with everyone!
- Share results of the TRANS-ARC Summit with your community
We are also looking for a community of people interested in future research with the TRANS-ARC team. This is not a requirement, but an option for those who are interested.
Who else will be 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 is being done with the survey results?
After the surveys are completed, our TRANS-ARC Steering Committee will review the questions and find common themes and topics.
During the Summit we will review the survey results in smaller discussion groups and create a final list of research topics and questions that are meaningful to the community.
We will also discuss barriers to participating in research, and ways of sharing research results with the community.
We plan to share 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.
You may choose to stay anonymous while participating in any or all portions of this project, including the virtual TRANS-ARC Summit.
We will ask you to provide information about yourself like age, geographic location, and other sensitive information such as immigration status and whether you have had surgery.
We ask these details to make sure we have included people from many different backgrounds, especially people whose voices are usually not included in research.
Your responses will be kept private and will not be linked specifically to you.
We can give instructions on how to remain anonymous while participating in the project.