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JAMIA Publication – June 4, 2019

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 

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.

Citation: Mitchell R Lunn, Micah Lubensky, Carolyn Hunt, Annesa Flentje, Matthew R Capriotti, Chollada Sooksaman, Todd Harnett, Del Currie, Chris Neal, Juno Obedin-Maliver, 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, Journal of the American Medical Informatics Association, ocz082, https://doi.org/10.1093/jamia/ocz082

PLOS ONE Publication – May 2, 2019

Using mobile technology to engage sexual and gender minorities in clinical research

ABSTRACT

Introduction
Historical and current stigmatizing and discriminatory experiences drive sexual and gender minority (SGM) people away from health care and clinical research. Being medically underserved, they face numerous disparities that make them vulnerable to poor health outcomes. Effective methods to engage and recruit SGM people into clinical research studies are needed.

Objectives
To promote health equity and understand SGM health needs, we sought to design an online, national, longitudinal cohort study entitled The PRIDE (Population Research in Identity and Disparities for Equality) Study that enabled SGM people to safely participate, provide demographic and health data, and generate SGM health-related research ideas.

Methods
We developed an iPhone mobile application (“app”) to engage and recruit SGM people to The PRIDE Study–Phase 1. Participants completed demographic and health surveys and joined in asynchronous discussions about SGM health-related topics important to them for future study.

Results
The PRIDE Study–Phase 1 consented 18,099 participants. Of them, 16,394 provided data. More than 98% identified as a sexual minority, and more than 15% identified as a gender minority. The sample was diverse in terms of sexual orientation, gender identity, age, race, ethnicity, geographic location, education, and individual income. Participants completed 24,022 surveys, provided 3,544 health topics important to them, and cast 60,522 votes indicating their opinion of a particular health topic.

Conclusions
We developed an iPhone app that recruited SGM adults and collected demographic and health data for a new national online cohort study. Digital engagement features empowered participants to become committed stakeholders in the research development process. We believe this is the first time that a mobile app has been used to specifically engage and recruit large numbers of an underrepresented population for clinical research. Similar approaches may be successful, convenient, and cost-effective at engaging and recruiting other vulnerable populations into clinical research studies.

Citation: Lunn MR, Capriotti MR, Flentje A, Bibbins-Domingo K, Pletcher MJ, Triano AJ, et al. (2019) Using mobile technology to engage sexual and gender minorities in clinical research. PLoS ONE 14(5): e0216282.
https://doi.org/10.1371/journal.pone.0216282

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