At PCORI, we fund work that aims to reduce healthcare disparities, bringing underserved populations whose everyday healthcare needs often go unmet into the research process, such as those in the transgender and gender nonconforming (TGNC) community.
For TGNC people, gender identity differs from their assigned sex at birth. Gender nonconforming people also identify with varying degrees of masculinity and femininity, a combination, or neither.
As a community, they are nearly nine times more likely to attempt suicide than Americans not identifying as TGNC, according to a 2014 report from the Williams Institute at the University of California, Los Angeles School of Law. And they are more likely to report negative healthcare experiences, including treatment refusal, according to a 2017 article in Transgender Health.
An estimated 1.4 million U.S. adults identify as transgender, according to a 2016 report from the Williams Institute. Yet, there is a lack of TGNC-serving clinics and gender-competent providers—ones using appropriate terminology and gender-affirming language.
“One transgender person in Corpus Christi, Texas, has their primary care physician, therapist, and psychiatrist in San Antonio—a round trip of four hours. It’s a public health issue because we are limiting a person’s access to quality care at an affordable cost,” said Angela Sturm, MD, a PCORI-funded project co-lead and transgender-competent surgeon based in Houston. Adds her co-lead Ankit Sanghavi, BDS, MPH, of the Texas Health Institute, “finding access to culturally competent and affordable care is the single most important challenge we face in developing research capacity.”
TGNC people also find themselves underrepresented in research, as studies rely heavily on nonprobability samples—ones lacking random selection—so findings may not accurately reflect the larger TGNC population.
To address these challenges, Eugene Washington PCORI Engagement Awards are supporting projects building collaboratives for patient-centered outcomes research (PCOR) with TGNC communities.
Bridging the Gaps
Texas is home to the second largest transgender population in the country, according to the Williams Institute. It’s also where Sturm, Sanghavi, and their colleagues lead the PCORI-funded project TransFORWARD to bridge the gap between transgender people and clinicians and researchers.
They are building a learning collaborative across Texas to create the capacity for patient-centered research in the transgender community. They also aim to increase the number of transgender people engaged in the PRIDE study, which focuses on understanding the TGNC population’s health experience. The Stanford University School of Medicine and University of California, San Francisco are partners in the PRIDE study.
The theme “nothing about us without us” guides TransFORWARD, which includes a transgender man and a transgender-competent surgeon as project co-leads.
“PCORI’s support is enabling us to learn from the life experiences of TGNC community members by connecting them with physicians and researchers,” Sturm said. “We are finding that this approach most effectively brings about culturally competent transgender health care.”
Partnering on PCOR
Another PCORI-funded project is creating a TGNC Research Advisory Network to support the development of patient-centered research projects on TGNC health and ensure the involvement of TGNC community members.
Network members are TGNC people from diverse backgrounds, researchers invested in building TGNC PCOR, and clinicians specializing in TGNC health care from four federally qualified health centers (FQHC) specializing in lesbian, gay, bisexual, transgender, and queer (LGBTQ) health. The centers included Howard Brown Health in Chicago, Illinois, and FQHCs in Washington, DC, Los Angeles, California, and Houston, Texas.
PCORI has funded both Engagement projects and clinical effectiveness research studies related to TGNC health. Here are some examples of the projects:
Lee Rogers, MA, a trans man from the Los Angeles center joined the project to represent the TGNC community. At the Los Angeles LGBT Center, where he serves on the trans advisory board, he has observed how the lack of transgender people in positions of power leads to problematic policies.
“There is a dearth of information about the health care and health-related outcomes for TGNC. For example, there isn’t any longitudinal data about the effects of hormone therapy over a lifetime,” Rogers said. “The TGNC Research Advisory Network is positioned to play a pivotal role in identifying and dispersing findings about the health needs of the TGNC community.”
More Work Ahead
While Rogers and others with PCORI support continue to make strides in TGNC health research, there is still more work to be done.
Increasing the visibility and representation of members of the TGNC community in health research means ensuring that they are represented at all levels of decision making, said Andie Baker, MA, project lead of the TGNC Health Research Advisory Network.
"There is so much diversity within the TGNC community," Baker said. "It’s important to capture that diversity in studies."