Sexual and gender minorities (SGMs)—including those in the lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities—have notable health and healthcare disparities. Despite these groups representing approximately 3.5 percent of the US population, a recent Institute of Medicine report recognized significant gaps in research to guide meaningful health interventions for them. Missing data compound the experience of many SGM people of being ignored or maligned by medicine and investigational science.
To address these shortcomings in data and improve the experience of medical and research participation among SGM people, we propose PRIDEnet: a participant-powered research network of SGMs. PRIDEnet—based at the University of California, San Francisco (UCSF)—is composed of over 40 partner organizations around the country, including health organizations, community centers, and national organizations that support or serve SGM people. PRIDEnet will be the primary vehicle for driving SGM community engagement as research participants and co-creators of the Population Research in Identity and Disparities for Equality (PRIDE) Study, the first nationwide prospective cohort study of SGMs. The PRIDE Study is unique because it uses a novel online participant recruitment, retention, and management system developed to bring cutting-edge research into people’s homes through their computers and phones.
PRIDEnet will facilitate involvement of SGMs in other studies and enhance understanding of the end-to-end research processes. Together, PRIDEnet and the PRIDE Study will support bringing SGMs into research and clinical trials. PRIDEnet has significant connections with other PCORnet member networks. These connections will help foster cross-network enrollment, collaboration, and efficient design. PRIDEnet will be a strong asset to PCORI by helping systematically answer its national priorities of addressing health disparities and the health of the LGBTQ community. PRIDEnet’s UCSF team has comprehensive experience in SGM health, community-based participatory research techniques, longitudinal cohort research methodology, and PCORnet requirements and processes. Situated in UCSF with strong institutional support from research centers, various medical specialties, and the nationally recognized Clinical and Translational Sciences Institute, PRIDEnet and its research arm—the PRIDE Study—are well-positioned to make a significant and long-lasting impact in improving the health of SGM people.
View more about this project on PCORnet.org.