ABSTRACT
Lesbian, gay, bisexual, transgender, queer, intersex, asexual, aromantic, and other sexual and/or gender minority (LGBTQIA+) communities are underrepresented in health research and subject to documented health disparities. In addition, LGBTQIA+ communities have experienced mistreatment, discrimination, and stigma in health care and health research settings. Effectively engaging LGBTQIA+ communities and individuals in health research is critical to developing representative data sets, improving health care provision and policy, and reducing disparities. However, little is known about what engagement approaches work well with LGBTQIA+ people. This paper describes the development of PRIDEnet (pridenet.org), a national network dedicated to catalyzing LGBTQIA+ community involvement in health research and built upon well-established community-engaged research (CEnR) principles. PRIDEnet's relationship building and digital communications activities engage thousands of LGBTQIA+-identified people across the country and offer multiple low-threshold ways to participate in specific studies and shape research. These activities comprise a CEnR infrastructure that engages LGBTQIA+ people on behalf of other projects, primarily The PRIDE Study (pridestudy.org) and the National Institutes of Health's All of Us Research Program (joinallofus.org/lgbtqia). Our impact, results, and lessons learned apply to those engaging communities underserved in biomedical research and include: the importance of building adaptable infrastructure that sustains transformational relationships long-term; implementing high-touch activities to establish trust and broad-reach activities to build large data sets; nurturing a team of diverse professionals with lived experiences that reflect those of the communities to be engaged; and maintaining CEnR mechanisms that exceed advice-giving and result in substantive research contributions from beginning to end.
ABSTRACT
Importance: Limited data describe the health status of sexual or gender minority (SGM) people due to inaccurate and inconsistent ascertainment of gender identity, sex assigned at birth, and sexual orientation. Objective: To evaluate whether the prevalence of 12 health conditions is higher among SGM adults in the All of Us Research Program data compared with cisgender heterosexual (non-SGM) people. Design, Setting, and Participants: This cross-sectional study used data from a multidisciplinary research consortium, the All of Us Research Program, that links participant-reported survey information to electronic health records (EHR) and physical measurements. In total, 372â¯082 US adults recruited and enrolled at an All of Us health care provider organization or by directly visiting the enrollment website from May 31, 2017, to January 1, 2022, and were assessed for study eligibility. Exposures: Self-identified gender identity and sexual orientation group. Main Outcomes and Measures: Twelve health conditions were evaluated: 11 using EHR data and 1, body mass index (BMI; calculated as weight in kilograms divided by height in meters squared), using participants' physical measurements. Logistic regression (adjusting for age, income, and employment, enrollment year, and US Census division) was used to obtain adjusted odds ratios (AORs) for the associations between each SGM group and health condition compared with a non-SGM reference group. Results: The analytic sample included 346â¯868 participants (median [IQR] age, 55 [39-68] years; 30â¯763 [8.9%] self-identified as SGM). Among participants with available BMI (80.2%) and EHR data (69.4%), SGM groups had higher odds of anxiety, depression, HIV diagnosis, and tobacco use disorder but lower odds of cardiovascular disease, kidney disease, diabetes, and hypertension. Estimated associations for asthma (AOR, 0.39 [95% CI, 0.24-0.63] for gender diverse people assigned male at birth; AOR, 0.51 [95% CI, 0.38-0.69] for transgender women), a BMI of 25 or higher (AOR, 1.65 [95% CI, 1.38-1.96] for transgender men), cancer (AOR, 1.15 [95% CI, 1.07-1.23] for cisgender sexual minority men; AOR, 0.88 [95% CI, 0.81-0.95] for cisgender sexual minority women), and substance use disorder (AOR, 0.35 [95% CI, 0.24-0.52] for gender diverse people assigned female at birth; AOR, 0.65 [95% CI, 0.49-0.87] for transgender men) varied substantially across SGM groups compared with non-SGM groups. Conclusions and Relevance: In this cross-sectional analysis of data from the All of Us Research Program, SGM participants experienced health inequities that varied by group and condition. The All of Us Research Program can be a valuable resource for conducting health research focused on SGM people.