Stanford Medicine X 2017: Transgender Patients and Research in Medical Transition, Charlie Blotner

The transgender community has always been quite self-reliant. More often than not, trans individuals look inwards and to the community for medical service and advice rather than going elsewhere out of fear and distrust. This started off as a historic unavailability of ways to address our needs, and has since turned into concerns about safety and knowledge due to lack of adequate research. The first documented use of hormone replacement therapy in a female-to-male transgender individual took place in 1939 when Michael Dillon sought out what was considered to be experimental treatment from Dr. George Foss. Dillon was also the first transgender man to undergo phalloplasty in 1946. Using his medical school training, he served the community by performing a gender affirming surgery on Roberta Cowell, which was considered illegal at the time due to her transgender status. Over the sixty years since these first documented transitions, only one study (currently taking place at Emory University) has examined the long-term effects of medical transition. The transgender community is deeply dynamic and thrives off of medical knowledge within itself because this is also a community that is at times dangerous to seek out in-person in a way that people who talk about cancer or diabetes online are not worried about in the same way. What makes the transgender community different than other patient communities interacting on social media is the ways in which the trans community has embraced and assigned meaning to the more visual kinds of interactions, sharing self-tracking data through images and audio recordings. Social media has revealed pressure points, health concerns the trans community itself has identified, and these concerns are not reflected in the medical research being done. Transgender patients are asking complex questions about the risks of transitioning and the effects on their long-term health. These questions – and good answers – are noticeably absent in medical research. How can we move from pervasive uncertainty to credible information that allows people to make informed decisions? The focus of trans health research needs to shift so that patients can receive care responsibly and with as much information as possible, not just the bare minimum of the only information available. How might looking at these patient posed questions, markers and worries help guide us towards expanding our notions of trans health research? How can we move from pervasive uncertainty to credible information that allows people to make informed decisions? Patients are fully engaged with these sets of questions. It’s time for researchers to do the same.

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