122 Queer People Offer Suggestions to Improve the Medical System

Last July, I had an idea. I had encountered too many horror stories from queer people engaging with the medical system - both from being in community with queer folx and from reading academic literature on queer health. So, what if someone actually asked queer people for suggestions to improve medical education and the health care system?

QSL was still fairly young, but it’s reach was growing. I thought we could help get the conversation started, so I launched a survey. And today, the takeaways are finally ready to be shared!

Substack is certainly no medical journal, but I think it can be a place to start a critical conversation about what queer folx actually need from the medical system. However, I want to caution that these results are NOT part of an academic project and are NOT a comprehensive list of queer-friendly improvements to health care. The cohort of 122 anonymous survey respondents had great insights, but there are many perspectives missing from these data.

To give you a general sense of the group respondents to the QSL survey, they were predominately of white European descent (78.6% of the total) and trans-identifying (86.8%). Additionally, 49.2% of respondents identify as D/disabled, 7.4% were born with intersex traits, and 86% receive health care in the United States. The full diversity of the queer community is not represented here.

Instead, these results are based on the QSL community. They are a snapshot of a hyper-specific online readership and not a universal set of truths. I definitely think running a similar survey as part of a rigorous research program would be worthwhile! New and different ideas would definitely emerge from that data. I don’t have the access and resources to make that happen, so I chose to start the conversation in this imperfect way.

With that, I want to extend a heartfelt thank you to everyone who shared their ideas and experiences. Without you, this would never have happened. I’ve tried to include many thoughtful quotes from the survey, and I’d love to hear more from you in the comments if there’s anything you want to add or expand upon.

The QSL survey first asked from which fields of medical practice have folx had the most and least affirming experiences. The motivation in asking these questions was to identify the fields which require the most improvement in educating practitioners in queer health. Respondents were allowed to choose up to 2 choices for each question.

The top 5 provider types with whom respondents had the most affirming experiences were (in order) primary care physicians, psychologists, psychiatrists, plastic surgeons, and OB-GYNs. The 5 provider types with the worst experiences were (in order) primary care physicians, emergency room physicians, OB-GYNs, psychiatrists, and dentists.

As you can see, there is overlap in the fields where people have the most positive and negative experiences. This likely reflects a lot of labor on the part of queer patients who have to “try” multiple practitioners until they find one that actually respects them. Another cause of this is when practitioners outright refuse to serve queer people, a common experience among the survey’s respondents:

Overall, poor experiences with the medical system are common, and all practitioners, regardless of field, should be educating themselves about queer health. That said, there are some specific fields where improvement is crucial:

The QSL survey next asked respondents to rate the “overall knowledge” of the average medical provider with respect to a series of queer health topics, ranging from “not at all knowledgeable” to “very knowledgeable.” The average results are depicted below as a bar depicting the average rating ± one standard deviation.

In general, the perceived knowledge across these topics is middling, and there is a lot of room for growth. Note that the bars encompass a wide range which means there’s a lot of remaining uncertainty. These small differences are not authoritative, and the best conclusion from this graph is that medical professionals need comprehensive training about queer health and wellbeing.

I want to specifically highlight the lack of knowledge around intersex health which is clearly the area of lowest perceived knowledge in this survey. Any framework of medical education that is based on binary sex is explicitly exclusive of intersex health. Additionally, intersex people often have experiences of medical trauma that impacts interactions in health care settings.

I am not intersex, so I want to specifically highlight suggestions from intersex respondents to the QSL survey:

Last, the QSL survey provided space for open-ended answers to improve queer experiences with the medical system. Some themes emerged from these, discussed below.

Humility is a virtue in medicine. Queer people are often deeply engaged with our own health, learning about our own health from sources both online and away from keyboard. We bring this knowledge into our appointments and share it with providers to collaborate in our own wellbeing. Will queer patients be right all of the time? No, but neither will the doctor.

Medical professionals go through extensive schooling and training to get to their positions. The process is arduous and hierarchical (just ask a medical resident), often producing an air of elite arrogance that dismisses patients’ self knowledge.

Historically, this is especially true when working with queer patients. For much of the 20th century, the consensus in Western medicine was that queer people are confused and disordered. Horrific treatments like electroshock therapy were common. Gatekeeping of care was routine. This history partly informs the extra knowledge work that queer people do in preparation for medical appointments.

And yet today, many people still experience arrogant dismissals of health concerns. These providers join the long history of medical mistreatment of queer people. Some providers refuse to treat queer people altogether. This is unacceptable.

All patient-facing systems should be mindful of queer experiences. Patients don’t just interact with doctors and other practitioners. They also check in with administrative staff, see nurses, view their health information through electronic portals, and receive bills for their care. These interactions all present opportunities for misgendering, deadnaming, and general hate.

All members of the office and all patient-facing documentation should be using preferred names and pronouns. This will require phasing out gendered language among staff and developing strategies for making the accurate information available. This is easily done without disclosing someone’s personal health information.

Unfortunately, this will likely be hardest to implement in billing, given that legal names are often required. Removing this requirement will require a larger (but not impossible!) shift in social/legal regimes, but in the meantime providers should be determining ways to minimize the use of legal names. Doctors and nurses should never walk into a patient’s room and use their legal name if the patient has disclosed a preferred name.

Last, laws have a huge impact on how queer people experience the health care system. A system where health care is expensive or inaccessible is harmful! Activism to change the system within your own country is always worthwhile. Each nation has its own landscape, so it’s impossible to offer a one-size-fits-all solution. Some examples from the QSL survey are included below:

Once again, a huge thank you to everyone who shared their opinion in the QSL survey. I really appreciate your taking time to share your experiences with us. If you have anything you want to add or elaborate on, please comment below!