A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study--The PRIDE Study

Mitchell R Lunn; Micah Lubensky; Carolyn Hunt; Annesa Flentje; Matthew R Capriotti; Chollada Sooksaman; Todd Harnett; Del Currie; Chris Neal; Juno Obedin-Maliver

doi:10.1093/jamia/ocz082

A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study--The PRIDE Study

J Am Med Inform Assoc. 2019 Aug 1;26(8-9):737-748. doi: 10.1093/jamia/ocz082.

Authors

Mitchell R Lunn^{1

2}, Micah Lubensky^{2

3}, Carolyn Hunt^{2

3}, Annesa Flentje^{2

3}, Matthew R Capriotti^{2

4}, Chollada Sooksaman⁵, Todd Harnett⁵, Del Currie⁶, Chris Neal⁶, Juno Obedin-Maliver^{2

7}

Affiliations

¹ Division of Nephrology, Department of Medicine, Stanford University School of Medicine, Stanford, California, USA.
² The PRIDE Study/PRIDEnet, Stanford University School of Medicine, Palo Alto, California, USA.
³ Department of Community Health Systems, School of Nursing, University of California, San Francisco, San Francisco, California, USA.
⁴ Department of Psychology, San Jose State University, San Jose, California, USA.
⁵ THREAD Research, Tustin, California, USA.
⁶ Analog Republic, London, UK.
⁷ Department of Obstetrics and Gynecology, Stanford University School of Medicine, Stanford, California, USA.

Abstract

Objective: Sexual and gender minority (SGM) people are underrepresented in research. We sought to create a digital research platform to engage, recruit, and retain SGM people in a national, longitudinal, dynamic, cohort study (The PRIDE Study) of SGM health.

Materials and methods: We partnered with design and development firms and engaged SGM community members to build a secure, cloud-based, containerized, microservices-based, feature-rich, research platform. We created 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.

Results: We built a secure digital research platform with engaging functionality that engaged SGM people and recruited and retained 13 731 diverse individuals in 2 years. A sizeable sample of 3813 gender minority people (32.8% of cohort) were recruited despite representing only approximately 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 health research.

Discussion: With an appealing digital platform, recruitment and engagement in online-only longitudinal cohort studies are possible. Participant engagement with meaningful, bidirectional relationships creates stakeholders and enables study cocreation. Research about effective tactics to engage, recruit, and maintain active participation from all communities is needed.

Conclusion: 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.

Keywords: cohort studies; database management systems; longitudinal studies; sexual and gender minorities; vulnerable populations.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

Adult
Database Management Systems*
Female
Humans
Longitudinal Studies
Male
Mobile Applications
Patient Selection*
Research Design
Sexual and Gender Minorities*
Text Messaging

Abstract

Publication types

MeSH terms

Grants and funding