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. 2019 Aug 1;26(8-9):737-748.
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

Mitchell R Lunn  1   2 , Micah Lubensky  2   3 , Carolyn Hunt  2   3 , Annesa Flentje  2   3 , Matthew R Capriotti  2   4 , Chollada Sooksaman  5 , Todd Harnett  5 , Del Currie  6 , Chris Neal  6 , Juno Obedin-Maliver  2   7
Affiliations

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 et al. J Am Med Inform Assoc. .

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.

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Figures

Figure 1.
Figure 1.
PRIDE digital research platform architecture diagram. Abbreviations: API, application programming interface; AZ, availability zone; SMS, short message service; SQL, structured query language; SSH, secure shell; SSL, secure sockets layer; VPC, virtual private cloud.
Figure 2.
Figure 2.
Real-time cohort statistics displayed on participant and administrator dashboards.
Figure 3.
Figure 3.
Modal capturing e-mail address of individuals who did not join The PRIDE Study.
Figure 4.
Figure 4.
Example modal with congratulatory imagery to foster data completion. Simulated datum (ie, a nonreal participant) is shown in the figure.
See this image and copyright information in PMC

References

    1. Sexual & Gender Minority Research Office, National Institutes of Health. https://dpcpsi.nih.gov/sgmro Accessed March 23, 2019.
    1. Pérez-Stable E. Sexual and Gender Minorities Formally Designated as a Health Disparity Population for Research Purposes NIMHD Director’s Message. https://www.nimhd.nih.gov/about/directors-corner/messages/message_10-06-... Accessed March 23, 2019.
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