The PRIDE Study from the Participant’s Perspective
by: Ava Cecilia Snow
Despite having worked with The PRIDE Study as an undergraduate research assistant for over a year, I had yet to join the study as a participant. I had assumed that researchers were not allowed to contribute data to the study due to conflict of interest but when one of my mentors mentioned — he was a participant — I knew it was important for me to join. Not only would it be a way to contribute more to LGBTQ+ health research but, going through the questionnaire as a participant would help me understand the data that we work with in The PRIDE Study from a fresh point of view.
But honestly, it was more than that. From years of appointments with doctors who assumed that I was straight and never considered how my sexual orientation could impact my health, and quarter after quarter of health-related university classes that never even mentioned the LGBTQ+ community (or devoted one lecture to us at most), I had a deep-rooted desire to be seen and recognized in a medical context. Participating in the study would mean a chance at visibility, and I would get to provide information about my experiences in a setting where they would be used to contribute to the goal of health equity for LGBTQ+ people. The survey questions were clearly designed to understand the participant as a whole human being, not only as a data point. Detail after detail revealed the careful thought that went into designing the participant experience, from the ability to choose what terminology I would prefer used to describe my anatomy, to the encouraging messages that popped up after completing each section like, “Thank you for the time and energy you have put into helping us understand LGBTQ+ people’s diverse and vibrant lives as we work towards helping LGBTQ+ people thrive!”
After I was done, I did not feel the sense of survey fatigue I had expected after looking at a screen and carefully checking boxes for 45 minutes. Instead, I felt grateful that The PRIDE Study exists and provides a space for LGBTQ+ people like me to share our lifetime experiences with health. So many aspects of health for LGBTQ+ people are not well understood because of a historical lack of research, which is why initiatives like The PRIDE Study are such an important step in the process of achieving health equity for the LGBTQ+ community.
Although it is certainly no substitute for access to actual affirming and educated clinicians, it does provide hope that in the future LGBTQ+ people will be able to access the kind of healthcare that we deserve. There are already many findings from The PRIDE Study’s research that have the potential to improve the healthcare that LGBTQ+ people receive. For example, I have been working on a project about sexual function in LGBTQ+ people who have vaginas, in which we explored whether a questionnaire that is commonly used to diagnose sexual dysfunction in cisgender heterosexual women can be modified for use in sexual and/or gender minority populations. This is incredibly important because when the tools that healthcare professionals use for diagnosis are not built for our community, it makes it much more challenging for LGBTQ+ people to get effective treatment. This is only one of many examples of how The PRIDE Study’s work is challenging the ways that the needs of LGBTQ+ people often go unconsidered by the medical field.
In completing The PRIDE Study surveys, I also found myself freshly inspired by the thousands of LGBTQ+ people who have chosen to participate and share their stories and experiences. It is truly a testament to our community that so many people are willing to devote their time and energy to support health equity for LGBTQ+ people.
If you feel comfortable, I strongly urge you to consider joining The PRIDE Study, contributing to the larger effort to help our community thrive. Your experiences with health deserve to be seen and recognized! And if you are already a participant, thank you. Nothing that The PRIDE Study does would be possible without you!
