People who identify as a sexual and gender minority are underrepresented in medical research. One significant reason: Stigma and discrimination often drive members of these groups away from the healthcare system, according to researchers.
That makes it difficult for doctors and research scientists to study the longitudinal health issues that impact the LGBTQ (lesbian, gay, bisexual, transgender or queer) community.
Researchers running The Population Research in Identities and Disparities for Equality (PRIDE) Study at Stanford University are trying to fill this gap. Two years ago, researchers began engaging with this community through smartphone apps and a web-based platform rather than the traditional approach to longitudinal studies with in-person visits. As a result, they have found early success in building a study cohort, according to a study published in the Journal of the American Medical Informatics Association (JAMIA).
The PRIDE Study launched as a digital health platform for the first large-scale, long-term national health study of people who identify as a sexual or gender minority. Researchers at Stanford and the University of California, San Francisco set out to engage and create the largest LGBTQ cohort to improve sexual and gender minority health representation in health research.
The National Institutes of Health has recognized sexual and gender minority people as a health disparity population for research because they experience numerous health and healthcare inequities including high smoking rates, worse mental health outcomes, high prevalence of certain infectious diseases and low utilization of preventative care services, according to the JAMIA study, which was published in June in connection with LGBT Pride Month.
There are two primary reasons this community is underrepresented in biomedical research—the issues of stigma and discrimination as well as limited health-related data collection on this population, according to the lead study authors and primary investigators Mitchell Lunn, M.D., and Juno Obedin-Maliver, M.D., both assistant professors at Stanford.
The traditional approach to longitudinal cohort studies, which involves in-person physical examinations and biospecimen collection, often is expensive and difficult to start, grow and maintain, the study said.
The researchers set out to build a cloud-based, online-only research platform to engage and recruit study participants while also providing them with a level of trust and safety as well as convenience. Digital interactions offer safety by avoiding interpersonal interactions that may be fraught with discrimination in one’s local community, Lunn, a nephrologist, and Obedin-Maliver, an obstetrician/gynecologist, said in the study.
"An online-only experience allows participants to join and participate in familiar environments, such as their homes or work, without interpersonal interactions that may be stigmatizing or discriminatory. The platform was created by people in the LGBTQ+ community, for people in the LGBTQ+ community," Lunn told FierceHealthcare.
As part of its community engagement efforts, the program created PRIDEnet, a national network of individuals and organizations that actively engage with sexual and gender minority communities such as health clinics, community centers, and advocacy organizations. Study participants were recruited via in-person outreach, social media advertising, and word-of-mouth, and eligibility and enrollment into the study occurred exclusively online.
The pilot phase of the study that began in 2015 used an iPhone app to recruit participants. The study relaunched in 2017 on a web-based platform to reach a more diverse pool of participants.
As a result of the online-only platform and the community engagement efforts so far, the program recruited and retained 13,731 individuals from different backgrounds in two years. A sizeable sample of 3,813 gender minority people (32.8% of the cohort) was recruited despite representing only approximately 0.6% of the population.
Participants were also diverse in terms of age, sexual orientation, gender identity and geography. The study 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 health research, according to the JAMIA study.
Study participants also shared more than 3,500 topics for future investigation. They wanted the researchers to study anxiety, depression and suicide in people who identify as lesbian, gay, bisexual, transgender or queer; the role of family support in both physical and mental health; and why many LGBTQ people persevere in the face of stigma and discrimination, among other topics.
The online-only research platform is critical to the study's success for engaging, recruiting and retaining participants, Lunn said. "The platform delivers health surveys to the participants in addition to collecting their demographic and contact information. The success of the platform not only includes recruitment of new participants but also continued interaction with participants to maintain updated information," he said.
The study's initial iPhone app-based pilot phase generated valuable community-provided insights that influenced the development of the digital research platform. These insights included enabling participants to learn about the other participants in a way that protects individual privacy and conducting research on topics important to these particular communities.
As the PRIDE study evolves and new technologies emerge, there are multiple areas ripe for additional platform development, Lunn said, such as participant-level biospecimen collection and storage tracking and linkage to electronic health records and other data sources including direct-to-consumer genetic testing results like 23andMe.
Gamification and innovative methods to return study results to participants might help optimize study participant retention, the study said.
The PRIDE Study, as a data resource for sexual and gender minority health researchers, will improve the medical community's understanding of physical, mental and social health, Lunn said.
The researchers also noted that a similar approach may be successful in partnership with other underrepresented and vulnerable populations.
"With notable technological advancements and rapidly decreasing costs of digital technologies, exclusively online longitudinal cohort studies may increase the efficiency and effectiveness of clinical research," the researchers said.