Gender-affirming medical care is often determined by doctors and researchers who are not transgender. The Transgender and Non-Binary Allied Research Collective (TRANS-ARC) aims to change that. OHSU urologist Geolani Dy co-founded the collective to incorporate trans and nonbinary patient perspectives in research about gender-affirming surgeries. Since the collective started in 2019, trans and nonbinary patients have been shaping the ways that providers care for people in their community, including choosing research topics to focus on and influencing the ways that surgical outcomes are measured. We hear from Dy and TRANS-ARC Project Co-Lead Jae Downing, who is an assistant professor of health policy at the OHSU-PSU School of Public Health.
Note: The following transcript was computer generated and edited by a volunteer.
Jenn Chávez: This is Think Out Loud on OPB, I’m Jenn Chávez in for Dave Miller. I am super excited to be here with you all today. With that, onward into our show.
Gender-affirming medical care is often determined by doctors and researchers who are cisgender, not transgender or nonbinary. The Transgender and Non-Binary Allied Research Collective, or TRANS-ARC, is working to change that. Oregon Health and Science University urologist Geolani Dy helped form the collective in 2019 to incorporate trans and nonbinary patient perspectives into research about gender- affirming surgeries. These patients are informing and shaping the ways medical providers care for people in their community.
Geolani Dy joins me now to talk more about the collective. She’s an assistant professor of urology and plastic surgery at the OHSU School of Medicine and the co-founder of TRANS-ARC. Also with us today is Jae Downing. They are an assistant professor of health policy at the OHSU-PSU School of Public Health and a TRANS-ARC project co-lead. Geolani, Jae, welcome to the show.
Geolani Dy: Thank you so much for having us.
Jae Downing: Thank you.
Chávez: Geolani, let’s start off with you. So leading up to co-founding TRANS-ARC in 2019, as a medical provider what made you realize there was a need for more research about gender-affirming care that actually centered on trans and nonbinary experiences.
Dy: That is a great question. I am both a surgeon and a researcher and so I spend half my time in clinical care, seeing patients and performing gender-affirming surgery, and patients will come to me in consultation and ask very relevant questions. What can I expect as far as sexual function after surgery? What will this mean for my quality of life or how I feel in my body? And a lot of these questions can be answered to some extent through the existing research, but they really need to be answered specifically from the patient’s perspective rather than from the surgeon’s perspective. And so being able to answer those questions was really what fueled me to start this initiative.
Chávez: I think one of the first steps was reaching out and building relationships with people in the community who you wanted to get involved with this collective’s work. How did you decide who to engage with and involve at the outset?
Dy: Initially I reached out to Amy Penkin, who’s clinical manager of our transgender health program, and Jae Downing, who’s on the call with us today, and we brainstorm together who needs to be at the table. We thought about people with experience - lived experience - with a range of gender-affirming surgeries, people who have lived in community advocacy spaces, and really wanted to represent the broad range of community experiences. In addition to caregivers, surgeons and other members of the healthcare team, researchers, and even payers and industry representatives. These were all groups that we considered relevant to this discussion.
Chávez: And Jae, like Geolani mentioned, you were involved with this process as well and I know building trust with the communities you’re working with is super important here. How did you work on doing that? Especially with marginalized people who might be hesitant to trust because of negative past experiences they’ve had with the health care system?
Downing: Yeah, I think that’s a big challenge that we addressed in this project. I mean, at the core of it we have an information problem that we were trying to solve; if you were a patient and you wanted to find out about outcomes after your knee surgery you can Google that and you can say, ‘what should I expect after surgery? What should I expect in 3 to 5 years?’ But for people who are undergoing gender-affirming general surgery, and also their providers and their families, they type that into Google and they’re going to find all kinds of things that’s not based on science. And that’s in part because of what you said, that there’s been a deep history of mistrust of the medical community because of history of discrimination over a long period of time. So, we really wanted to build trust with the community in a few different ways. The first is we really believe in compensating people for their time. A lot of trans people are asked to share their stories and their experiences without being compensated, and are continually asked the same questions over and over.
And then we also addressed wanting to make sure this research actually has an impact, so you’re not just showing up and giving us our stories and then that’s going to be on with it. We provided open ways of communication with us. And then the third way was also to bring on trans-identified researchers and community leaders, and to ask them how we can build trust in the community.
Chávez: So what you’re talking about is someone who may have gone through a surgery and they’re getting hit up about multiple different research projects and then they’re like, ‘Okay, thanks for answering these questions’, and they just never hear anything about it ever again.
Downing: That happens a lot of times in research. I think the challenge is, with this community, is it is an extremely small population. So a lot of folks are being asked so many times all these, you know, research pet projects. But we really wanted to make sure that this research can have more of an impact than it has before.
Chávez: For many years and still in many states and places around the world, the medical establishment has served as sort of a gatekeeper for gender-affirming care. There has been a push more recently to move to a self-ID model of care. Can you describe that? And what a more self-ID focused model of care looks like?
Dy: Historically, gender-affirming care and trans health have been very much medicalized, and so looking into ways of better identifying folks’ needs holistically and being able to think about informed consent and really providing matching services and the health care we provide with an individual patient’s needs based on their own preferences and priorities and where they’re at is where really where this field needs to go. I think we have a long way to go in that aspect.
Chávez: And Jae, back to you for this question. This work that TRANS-ARC is doing and a lot of the community engagement that we’ve just been talking about started before the pandemic, right? How did the onset of the pandemic affect the way y’all were doing this work?
Downing: Sure, it changed in a lot of ways. Originally we were hoping to convene an in-person meeting, I think like a lot of folks, and we had to quickly switch to a virtual model which ended up being actually quite beneficial in several ways. We were able to invite more people to attend because we have a set amount of resources, but we were able to - we didn’t have to pay for lodging, etc. So that was amazing. We were able to bring in 75 folks as opposed to smaller numbers before. We were also able to have different types of modalities for interacting with the patients. For example, some folks that joined us identified as stealth. They’re not out to their community or out to anyone. And they were able to join us, keeping their video off. Some other folks had dysphoria about their voice because it wasn’t aligned with their gender identity and they were able to just turn on their cameras and type their responses while engaging in our meeting.
Chávez: So having this sort of thing virtually was actually a more potentially affirming environment for some of the community members you were working with?
Downing: I think it can be for some… I mean in some ways it can be more difficult to build trust because you’re not in person with folks, but we were able to invite more types of people that may have not been able to take off time from work to fly and join our conference or things like that. I think we were able to get a broader us, a broader range of folks joining us than we would have otherwise.
Chávez: That’s great. Geolani, we’re talking about this virtual summit in 2021, and it was focused on discussing some of the priorities for the type of research you want to see; can you tell me about some of the big questions that came out of that event, that summit?
Dy: Absolutely. There was a lot of lead-up work prior to our virtual summit, which is mostly in the form of surveys that we just put together with our majority trans steering committee. Through these surveys - which reached over 1000 people - we were able to gather some core topics and were able to rank order them, in order of importance to the broader community. Some of the topics looked like: sexual health and function, mental health experiences with the healthcare system, discrimination and transphobia, and importantly peer support. One of our findings was that patients want perspective and support from other patients as they navigate the surgical process. A key question that came out of this process was would an intervention, such as peer support, improve patient outcomes and experiences of surgery? And there were a number of other interesting questions and concepts. Jae, maybe you could talk a little bit about costs and access to care which we’ve recently delved into.
Chávez: I hear that research on that is coming out soon, right?
Downing: Yeah, absolutely. One of the things that came out of the conference also which has been highlighted a lot in the media lately is lack of insurance coverage for gender-affirming general surgeries and other types of care. A lot of patients voiced their concerns around extremely high out of pocket costs and having to travel quite far distances to access surgery. This is one of the questions that we looked at in our forthcoming research in the Journal of the American Medical Association, coming out next month.
Chávez: So Jae, your collective’s work right now is centered on gender-affirming genital surgeries. But of course all trans and nonbinary people are not the same. Not everyone wants or needs this kind of surgery. As a collective do y’all have any goal to engage with trans and nonbinary people about other types of gender affirming medical care in the future?
Dy: Yeah, that is a great question. We started this concept mostly because it was born out of my perspective as a surgeon who performs genital surgery, but we’re seeing that a lot of the strategies that we’ve used and a lot of the community collaborations we formed are so applicable across gender-affirming care, across trans wellness and health. And so I think there’s a lot of potential to grow beyond this specific topic area.
Downing: Yeah, I would agree with that. I think also there’s many different types of gender-affirming care that folks might require over their life, which could include other things like top surgery and other types of non-surgical interventions. Because, as you said, gender-affirming general surgery is actually still quite rare. And we don’t necessarily know that if that’s because some folks don’t want or desire it or because of this issue around lack of information - this information problem - if folks don’t know how safe and effective and what the outcomes will look like for them, they might be less likely to want to engage in that care.
Chávez: I can see how that lack is something that is just another barrier to care. I want to really acknowledge we’re having this conversation right now, as nationally, there is a pretty transphobic legislative environment for trans and nonbinary people. For instance, multiple states are proposing laws that would limit trans student athletes from playing on school sports teams in Texas. The state child welfare agency has been investigating some parents who provide their trans children with gender-affirming care, based on this false claim that affirming their kids identities is child abuse. I want to ask, how are these ongoing legislative attacks on trans and nonbinary people affecting your work right now, or you personally? I would love to hear from both of you on this; maybe Geolani, if you could answer first.
Dy: Well, it certainly comes up in clinical care quite a bit, even if it’s not in the care of trans kids and adolescents who have gone through puberty suppression and then reach an age where they’re considering surgery and wanting to have those discussions. All of my patients are impacted to some degree by this political climate and that constant threat of getting their health care taken away, and so there’s more urgency even amid these times where we have limited healthcare resources to get this care done as soon as possible.
Chávez: What about you, Jae? How is the environment that we’re in affecting your work, or you?
Downing: I mean, I think for me it has and it continues to fuel a lot of my research, because basically our role as researchers is to provide scientific evidence about X,Y, Z., right? And a lot of these claims that are made in these policy decisions, or decisions not to treat trans youth, or accept not to provide coverage for gender-affirming care, they’re not based on scientific rationale and a lot of them are pointing to the fact, well there’s not much evidence on this area, so we don’t actually know. For example, Medicare doesn’t provide coverage, it doesn’t have a national coverage of determination for gender-affirming care because they said there’s lack of scientific evidence. So my role is really to come up with that research and policy makers can use that as they see fit?
Chávez: I think you’re talking about this, but do you see the ways in which not only lack of research but also misinformation about existing research is motivating this anti-trans sentiment or legislation.
Downing: We’ve seen that happen over more than a decade with our community and we actually came out with some research when there was a ban against trans military… trans folks serving in the military and they said this was because trans folks had worse health than cisgender folks and was going to cost them more. So myself and Williams Institute created some research and we basically found there were no differences in these health outcomes. Whether or not they actually used that, it’s back and forth, but I think our role again is just to create the science and hope that the policy will follow.
Chávez: Geolani, Jae has been talking about what they feel their role is, but what about you, as a member of the medical community? What do you feel is your role in resisting the transphobia that patients are facing, and also just kind of righting some of the historic wrongs of how trans and nonbinary people have been medicalized in the past?
Dy: That is a huge part of my mission in the work I do. I think it starts in every clinical encounter, being able to build trust with every patient I see and recognizing that there is a lot of historical trauma, both collective trauma and individual trauma that folks have experienced in health care settings, and trying to do better by creating an affirming environment that people want to seek care in, being able to provide that individual clinical care that’s at the level that trans people deserve.
And then of course in my research, thinking about really centering the voices of the people who are most marginalized and being able to create spaces where people can thrive and create high quality research. I think all of these things work together in terms of combating that transphobia and building the evidence that we need to accelerate research in this area.
Chávez: And we just have about a minute left with each other, but this is something I would want to ask either of you. Is there anything that you’d say directly to listeners right now who are receiving or who may want to pursue gender-affirming care?
Dy: I would say, at least here at OHSU, we are working very hard during a very difficult time to provide the best quality care that every individual patient needs. And so gathering the strength, encouraged to come and seek that care is important to us.
Chávez: Jae, do you have anything to add?
Downing: I would say just come come join us, reach out to us. Go on our website, follow our work. And we want your perspective to be heard, not only just the people in Oregon listening today, but throughout the country. So please, reach out.
Chávez: Jae, Geolani, thank you so much for being with us today.
Downing, Dy: Thanks for having us.
Chávez: I’ve been speaking with Geolani Dy and Jae Downing. They are assistant professors at the Oregon Health and Science University and leaders of the Transgender and Non-Binary Allied Research Collective.
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