This study, led by Stanford and the University of California, San Francisco, incorporated a digital health platform for the first large-scale, long term national health longitudinal cohort study of people identified as sexual or gender minority.
The Northern California research teams sought out this study as sexual and gender minority (SGM) people are underrepresented in research. The sponsors sought to create a digital research platform, including heavy use of smart phone technology, to engage, recruit and retain SGM people in a national, longitudinal, dynamic cohort study—THE PRIDE study.
The UCSF and Stanford research teams partnered with design and development firms and engaged SGM community members to build a secure, cloud-based containerized, microservices-based, feature-rich, research platform. Called PRIDEnet, a national network of individuals and organizations that actively engaged SGM communities in all stages of health research. The PRIDE Study participants were recruited via in person outreach, communications to PRIDEnet constituents, social media advertising, and word-of-mouth. Participants completed surveys to report demographic as well as physical, mental and social health data.
The research team build a secure research platform with engaging functionality that engaged SGM people and recruited and retained 13731 diverse individuals in 2 years. A sizeable sample of 3813 gender minority people (38.2% of cohort) were recruited despite representing on 0.6% of the population. Participants engaged with the platform and completed comprehensive annual surveys—including questions about sensitive and stigmatizing topics—to create a data resource and join a cohort for ongoing SGM research.
This digital research platform successfully recruited and engaged diverse SGM participants in The PRIDE Study. A similar approach may be successful in partnership with other underrepresented and vulnerable populations.
TrialSite News Comment
The PRIDE Study had considerable success in reaching out to traditionally difficult to reach population for clinical research participation. We believe that the investigators had accumulated material knowledge that should be tapped into, understood and reused for other difficult to recruit populations.