In 2017, I underwent gender affirming phalloplasty after years of planning and waiting. Prior to 2017, the closest surgeon was hundreds of miles away from the typically health care–saturated New York City. I was lucky to live there and gain access to care at that time, as many parts of the United States still do not have genital gender affirming surgeons 5 years later.¹ Beyond distance, I was experiencing a more intractable barrier to care: unaddressed questions about the patient experience of surgery. I worked in health care and did a deep dive through the clinical literature and online peer support groups. Technical details and individual narratives about the recovery process helped me decide that surgery was the right choice for me, yet despite my overall certainty about surgery, there were still aspects of my surgical decision-making which felt like throwing a dart at the board. I had benefited from many informal patient-led efforts to collect reviews of surgeons and techniques, yet I knew that this was not comparable with an evidence-based medicine approach. Robust information about the patient experience of surgery was a resource I needed, but it was not present in the literature.²

Figure. Gaines Blasdel presents on TRANS-ARC at the Patient Perspectives Program at AUA2022.

These barriers motivated me to create peer health education resources, undertake gender affirming surgery research, and now study medicine as a first-year student at the University of Michigan Medical School. I experienced health care impacted by a “literature gap,” and like many other transgender people, this experience was further compounded by occasional mistreatment in health care settings, the downstream effects of social stigma,³ and lack of gender affirming care content in medical education.⁴ When I set out on this path, I believed that if I didn’t create the evidence-based care my community needed, no one in the institution of medicine ever would. I hear this same refrain from the incredible group of transgender medical trainees and junior researchers I am in contact with: we need to take care of each other, as the institution had not demonstrated a capacity to take care of us.

I still believe that increasing transgender and nonbinary-identified leadership in academic medicine will bring vital skills and energy; however, I’m starting to change my narrative about baseline institutional capacity. The surgical care I received as a patient has been impeccable, a truth about the commitment of the surgeons and care providers involved, which now lives in my body. The quality of this care, and the compassion it was delivered with, is what grants me the personal well-being needed to sustainably return this care to my future patients. Beyond the joy medicine has granted me in my own body, I’ve had the honor to begin research work I want to see in the world now, rather than delaying for years of training and gaining institutional access.

In 2021, I joined with urological surgeons and researchers at the TRANS-ARC summit (www.trans-arc.org), a Eugene Washington Engagement Award funded project of the Patient-Centered Outcomes Research Institute. We convened an engagement conference which created comparative effectiveness research questions sourced from a diverse group of patients and stakeholders. Providing researchers with these questions is the first step to using the resources of academic medicine to enrich critically needed care, but more fundamental to my own intentions, it allowed transgender people to use their voices to participate in the care of each other. Dr Geolani Dy, the project lead, alongside her collaborators in academic medicine, had labored through the grant writing, planning, convening, and report writing process with this express goal in mind. We transgender people need to take care of each other, and through TRANS-ARC, I have learned that the institution has the capacity to support this.

When I submitted a presentation on our work to the AUA Patient Perspectives program, I hoped that urologists working with other populations could learn from our successful initiative,⁵ and understood that urology was a field with many foundational patient-centered engagement initiatives to learn from.⁶ I was supported by the AUA, which served as a fantastic partner in guiding the process, ensuring that attending and presenting was stress-free. When meeting the additional presenters, I was struck by the many pairs of clinician-investigators with their patient-advocate colleagues, collaborators like Dr Dy and myself, presenting on similar work in diverse fields. The care and support of these institutional investigators for their peer-advocate partners was palpable in the time leading up to the presentations. During the session, I was further moved by how thoughtful and engaged the AUA attendees were. I saw reflections of the collaborative future being built with TRANS-ARC, which was then refracted and magnified through the excitement of the diverse urologists in the audience.

In addition to witnessing the wide buy-in of urology to the importance of patient perspectives, an unexpected benefit was fostering solidarity with groups affected by other conditions. In particular, Tight Lipped (https://www.tightlipped.org/), a vulvovaginal and pelvic pain advocacy group, was working on overlapping issues. Our respective clinical diagnoses were each recently moved from the chapter on mental and behavioral disorders in ICD (International Classification of Disease)-10 to a chapter on conditions related to sexual health in ICD-11.⁷ While it is materially useful to connect and create specific, cross-applicable resources on pathologization and access to care, it was also meaningful to have a group of fellow travelers building many of the same bridges. In addition to the support of the field of urology, patient groups supporting each other’s initiatives and gaining traction together will make a big difference. At the AUA Patient Perspectives session, it was clear that urology is a field with a commitment to empowering patients to be a partner in the future of academic medicine.