Conference reflections: Challenges in Data Collection

E. Shor, MPH

WI Population Health Service Fellow at UW-Madison

One of the sections today was entitled “LGBTI Health: Sexual Orientation, Gender Identity, and Intersex Data at Population and Clinical Levels,” and in this talk, four awesome presenters discussed a myriad of data collection triumphs and issues. Some of the triumphs I mentioned in an earlier post (example: starting to standardize a two-step method for collecting gender identity data), and some of the setbacks I mentioned earlier as well (need to strengthen data collection in intersex communities). I want to spend some time extrapolating on some of the points that Joanne Keatley of the Center of Excellence for Transgender Health discussed as challenges (many of these were mirrored in other discussions throughout the day as well).

Challenges in Data Collection

• No population-based studies yet conducted: one of the large gaps in research in LGBTQI populations is the fact that we have very little longitudinal, population-based research to tell us about what happens throughout the lifecourse. As you can imagine following groups of people for long periods of time is an expensive endeavor that requires financial and institutional committment…and to make it even more complex in our communities, we have immense diversity in our communities making it difficult to define the population at times. When Joanne was talking about this, I found myself thinking about all the advocacy that has gone into adding questions about sexual orientation or gender identity to large-scale surveys, and whether this is the next frontier in research-advocacy…making sure that current longitudinal studies include measures that include LGBTQI communities AND advocating for funding to do population-based data collection.
• Trans female centric and trans male invisibility in research: Joanne spent some time on the fact that much money for research in transgender and gender non-conforming populations has risen from HIV/AIDS research funding because trans feminine people have finally started to be counted in HIV data collection outside of the MSM category (big sigh)…so people really started paying attention to trans feminine folks when they realized they were at high risk of HIV, which as led to some trans masculine invisibility in both HIV data collection and in data collection overall. Now, it is very important to note that it is incredibly important to study trans feminine identified folks. I think the important take away message here was that it is important to name trans masculine invisibility in research and continue to work on this.
• “Post-transsexual” identity and stealth existence: there is a whole host of people who have transgender lived experience and do not identify as transgender or live in a way that they try to keep their transgender status very much under the radar for many different reasons. This is a challenge in data collection because these folks often fall through cracks and are miscategorized in data collection and analysis, which means we are not getting a thorough picture of our communities in health data. The two-step method for collecting data on gender identity is a good way to identify folks who often fall through the cracks because it allows researchers to see the “sex assigned at birth” and “current gender identity,” which very much helps.

Clearly there are many other challenges in collecting data in LGBTQI communities, including stigma, both in community and in research around doing this type of work. I’m glad there are so many talented and smart researchers in the field to help blaze this trail and decrease the stigma in academia and in communities. I look forward to hearing from more of those folks tomorrow at the conference.