Dr. Walter Bockting, of Columbia University who served on a committee that penned the report, returned to the stage to offer a brief history of the document, it’s findings/recommendations and next steps. Most striking was that the main point made by the study, which is there’s a general lack of research when it comes to sexual orientation and gender identity, a fact many of us are very much aware of, but I think the impact of this report is in the robust list of recommendations the study produced for NIH. Here are few:
NIH needs to implement a comprehensive research agenda.
Sexual orientation and gender identity data needs to be collected in all NIH federally-funded research.
Sexual orientation and gender identity data also needs to be collected in electronic medical records.
Research training should be created by NIH that is specific to sexual orientation and gender identity.
Encourage NIH grant applicants to address the inclusion or exclusion of sexual orientation and gender identity. (This is already a requirement for other marginalized groups, such as racial minorities.)
Identify sexual orientation and gender identity among the NIH official list of minority populations with disproportionate health disparities.
Dr. Bockting himself said at one point what I’ve been thinking since I read the study months ago, “A year ago I was skeptical about if we would receive the support needed to see these recommendations through. Without support it will be very difficult for us to make any progress.” However he went on to say, “But things are really beginning to look up and I think we’re going to begin making some strides.”
Dr. Bockting’s statements were overwhelming verified later by Dr. Rashada Alexander, a Health Science Policy Analyst at NIH. She discussed how NIH was responding to the IOM report, most notably the creation of the NIH LGBTI Research Coordinating Committee whose task is to create a national strategic plan for sexual orientation and gender identity research. I was pleasantly surprised to hear that this group existed and will be releasing their strategic plan by the end of the year. She also went on to discuss a funding opportunity announcement NIH has released specific to LGBTI health research and and other efforts of the NIH regarding LGBTI health.
It’s very empowering to know that our federal government is taking an intentional approach to studying LGBTI health, especially when this was something that wasn’t possible just five years ago. I feel as if I’m watching systemic change take place right before my eyes. It’s a very exciting time to be an LGBTI health researcher!
As I continue into the second day of the LGBTI Health Research Conference at Baldwin Wallace University, it struck me as pretty powerful that the BW’s president Robert Helmer opened the first day of seminars with the words “this is the perfect time and the perfect place for this [conference].” (BW Provost, Dr. Stephen Stahl also reiterated this sentiment just after lunch with saying, “this conference is at the core of founding values.”) This stayed with me throughout the morning as we heard from such innovative speakers such as Dr. Eli Coleman who, just through all of the heralding stories he shared, showed his longstanding impact on changing the American perspective on LGBTI health research. Dr. Coleman, who is currently the director of the Program in Human Sexuality at the University of Minnesota School of Medicine, also left me with a new mantra: “Without rights we will not have [good] health.”
After Dr. Coleman’s keynote address, the morning continued at a rapid-fire pace, with a revolving door of one prestigious presenter after another. Here are a few brief notes on the presentations I thought most intriguing.
During the “Translating Research into Policy and Heath Interventions” seminar track Kellan Baker, associate director of the LGBTI Research and Communications Project at Center for American Progress, gave a very interesting look at how political advocacy has led to inclusive research, highlighting the work of HIV/AIDS advocates during the 1980s. Baker went on to show that though there have been strides made concerning LGBTI political inclusion, there’s still so much more to be done. I found it interesting that between 2002 and 2010 there was absolutely no inclusion of LGBTI communities in any federal health research because of the change in presidential administration. This silence prompted the Gay and Lesbian Medical Association to create a sexual identity and gender identity specific companion report to the National Institutes of Health 2010 Healthy People report. Now in their 2020 Health People edition we see two LGBTI-focused reports because of such advocacy efforts.
Vivek Anand, Executive Director of Humsafar Trust in Mumbai, India, also took the stage during the “policy and health interventions” track and wowed myself an the audience with the grassroots, community-based research he’s been conducting in India, despite the country still criminalizing homosexuality. “On-the-ground work and community-based research is still crucial…if we are not out in the community and visible we will not be counted,” he said. Humsafar has fund-raised thousands of dollars and build several LGBT organizations in India, providing countless services and research for a nearly invisible community.
A brief break led right into a seminar track on “Sexual Orientation, Gender Identity, and Intersex Data at Population and Clinical Levels,” which I personally found rather enthralling. I was pleasantly surprised by the amount of evidence-based research that exists regarding adding sexual orientation and gender identity to medical forms and records.
Joanne Keatley, briefly detailed research from the Center of Excellence for Transgender Health at University of California-San Francisco that highlighted the groundbreaking work she was involved with to make the U.S. Center for Disease Control and Prevention start collecting transgender data in 2011. She also stressed the importance of including transgender female-to-males in HIV research, as much of their studies showed that this is an affected demographic, despite current perceptions.
Karen Walsh, an intersex activist, detailed the importance of intersex research and how to include intersex information collection in an accurate and affirming fashion. I learned so much on the intersex community that I was not aware of, including most who are intersex receive some sort of surgical interventions as children but surgery is often medically unnecessary.