Advocacy in Healthcare, a conversation with Charlie Blotner
Charlie Blotner is a patient and trans health advocate currently pursuing a Master of Social Work at the University of Washington. He started pursuing patient advocacy after his experience with a brain tumor (a topic that he’s blogged about extensively), and he worked alongside Origami’s own Matthew Erlendson at Stanford Medicine X and now sits on the Origami Innovations Advisory Board–helping to elevate often under heard community voices. We’re further excited to work with Charlie on TRANSition Health, a project aimed at advancing transgender health care delivery (stay tuned!), so we talked to him about his background, his past and current work, and how to pursue your passions. Our conversation, lightly edited, follows.
How did your background help you get to where you are today?
That’s a broad question, and it has a broad answer! I am a white, upper-middle class and able-bodied person who is read as male. As such, I navigate the world with just about as much power and privilege as there is in this world. That undeniably gives me access to certain people and spaces, and it’s important for that to be acknowledged before moving forward.
In regards to health care more specifically:
I first dipped my toe in the advocacy water when my predominant focus was on the psychosocial support and needs of the brain tumor community. This led me to the stage of Stanford Medicine X, and numerous other conferences and programs. By attending and speaking in these varying spaces, I came to know a number of people who worked in very influential health care positions. What I also noticed, though, was that the people I met and the conversations had about the health care needs of the transgender community while in these spaces were always brought up by me — I was, and often still am, the sole voice there to represent the trans community. That should never be the case, given that my experience as a white, trans masculine person is so vastly different than a trans woman of color.
I also felt frustrated that I could walk on stage and give an hour-long spiel about brain cancer that everyone understood right away, but then needed to define half of the words being used in my trans health talks. This year, I just stopped defining words. I made the decision that if I was giving a trans health talk to a medical audience, then I no longer needed to do trans 101 when giving a trans 301 level lecture. I went from defining cisgender every talk, to making it the audience’s responsibility to know, or do their own research, to learn about phalloplasty and how to perform it.
However, I also realized that as frustrating and emotionally laborious it may be for me, if I feel comfortable enough to share the needs I’ve observed within the trans community and that I’ve personally identified, then I will. I would rather do this to improve medical education and the trans health research being conducted than let it remain the same. Current trans health research, often motivated by curiosity and fascination rather than community benefit, is at times even unethical, and it will only change if community members continue to push it forward. As a trans person, I have firsthand knowledge and experience of what it is like to try and receive competent health care when health care professionals aren’t trained to treat the trans community. TRANSition Health with Origami is part of my effort to change that.
“Students are pushing providers beyond the boundaries of their current education for the better and recognize that waiting for health solutions in silence, and providers guessing what we want or need not only fails to help, but carries the potential for causing harm.”
Why are you doing what you’re doing right now?
I am currently pursuing my Master of Social Work — Health Practice at the University of Washington. My goal within this program is to gain a better and broader understanding of palliative and end of life care within the health care system, as well as the role of medical social workers so that I can serve patient communities in the most meaningful and impactful way possible.
While here, I am also continuing to co-curate the interactive series Trans Health: Patients & Providers with fellow trans health advocate Micah Rajunov. The series features an assortment of patients and medical providers from psychology, pediatrics, emergency medicine, social work, nursing, endocrinology, and research, all of whose varying expertise and perspectives about trans health push readers to consider standards of care and policies around the world.
I am also working on a teaching tool for counselors in training or counselors in practice with Sierra K. Dimberg, M.A. of Arizona State University and Catherine Butler, DClinPsy of The University of Bath to better understand the day to day experiences of transgender adolescents. Designing a different world for trans youth to live in also means redesigning the mental health services, teaching, and training tools available for their providers.
I recently went back to my brain tumor advocacy roots as well, and dedicated a great deal of time working on reviewing proposals for Department of Defense’s Congressionally Directed Medical Research Program. This peer-reviewed cancer research program is a part of a $60 million budget to be put towards my patient community, and while I probably should have said no to taking this project on given the commitment, I have the goal of making living with a brain tumor a manageable, chronic condition, and this is a part of working towards that goal.
The core reasons for why I am doing what I am doing remain the same: community voices need to be heard, and my voice has a platform to make sure that everyone’s voices, ideas, and opinions do indeed get heard.
Why are you a patient advocate?
Patients have this expert, lived experiential knowledge that isn’t always represented in research or the programming of national organizations. I think it would be more harmful for me to not use the access that I have to further the aims and goals of my various communities.
“So often research related to the trans community is about the trans community instead of for the community.”
What advice would you give to someone who wants to get involved with an issue they care about?
Step one: Find the people who are members of that community, and listen to what they’re saying. One of the worst things someone can do is barge right into a topic of interest that they don’t necessarily identify with and try to take over the efforts of, or shout louder than what’s already going on within that community.
Step two: Identify the skills of individual members of that community, and figure out how to leverage those skills for the groups benefit. Patients, designers, health care providers, researchers, social media stars, business savvy people, the founders — everyone knows how to use their voice in their own way, and how those voices come together, or even why they tend to stay apart, is important to think about.
Step three: Once you’ve identified existing roles within the community, figure out where you fit. Ask yourself, and members in the community, who or what needs the most help. How can you help collaborate, educate, inform, design, fundraise, etc. rather than distract from a movement already taking place?
Why are you excited about working with Origami on the trans health project?
More often than not, trans patients are let down by our providers. We learned from the 2015 US Trans Survey that one in five trans people educate our providers during appointments because of the gaps in trans health care. Generally speaking, we’re more likely to find accurate trans health information within our community and online than when we go to the doctor’s office, and that’s terrible. Eighty percent of gynecologists and 81 percent of endocrinologists, both specialists who frequently care for trans patients in relation to hormone prescriptions, have not received any training on how to care for trans patients. The lack of educational training is something that needs to be changed on an institutional level, but until that happens, ideas and efforts at Origami Innovations like TRANSition Health are exactly how we can get information about trans heath to the audiences needed on both the patient and provider end.
“The lack of educational training is something that needs to be changed on an institutional level, but until that happens, ideas and efforts at Origami Innovations like TRANSition Health are exactly how we can get information about trans heath to the audiences needed on both the patient and provider end.”
What makes a student-led process better than one run by health care professionals?
Students are in the midst of education. We know what we’re learning, and we also know what our education is missing. There is only a median reported time of 5 hours dedicated to teaching LGBT-related content over the course of the entire medical school curriculum, and a third of programs reportedly spend zero hours on LGBT health-related content during clinical training. Students recognize that. Students are sitting in classrooms right now thinking, wait, why didn’t we talk about PrEP and its uses, the differing cancer incidence rates in women who have sex with women, or how to monitor hormone levels in trans patients?
Students are pushing providers beyond the boundaries of their current education for the better and recognize that waiting for health solutions in silence, and providers guessing what we want or need not only fails to help, but carries the potential for causing harm.
What are you excited about? Why?
I’m excited to see more patient and student-driven transgender health research, along with health care professionals looking to collaborate with and learn about what is meaningful to the community. So often research related to the trans community is about the trans community instead of for the community.
Longitudinal research about and for the trans community coming out of the University of Washington is the best in the country, and world right now. The Aging With Pride study is looking at what it means to age while trans and what our community’s health looks like as older adults, and The Trans Youth Project is exploring the development of gender identity, mental health and sense of well-being over time. The Trans Youth Project is also hiring and expanding their team right now, which is really exciting! Both of these projects employ and have involved trans scholars throughout their design process, which is in part why their recruitment and engagement with the trans community have been so successful.
Any parting words of wisdom?
Ask yourself, and others: What lights your world on fire? Then find a way to go do that in some form or another every single day.