Articlegold2019

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

Mitchell R. Lunn · Matthew R. Capriotti · Annesa Flentje · Kirsten B. Bibbins-Domingo · Mark J. Pletcher · Antony J. Triano +3 more

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LGBTQ Health, Identity, and Policy Ethics in Clinical Research Mobile Health and mHealth Applications

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.

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2012The Health of lesbian, gay, bisexual, and transgender people: building a foundation for better understanding 1995Pattern languages of program design 2016Key cost drivers of pharmaceutical clinical trials in the United States 2009Best Practices for Asking Questions about Sexual Orientation on Surveys 2014Do Ask, Do Tell: High Levels of Acceptability by Patients of Routine Collection of Sexual Orientation and Gender Identity Data in Four Diverse American Community Health Centers 2018Sexual orientation disclosure in health care: a systematic review 2010Gender differences in online and offline self‐disclosure in pre‐adolescence and adolescence 2015The Internet’s Multiple Roles in Facilitating the Sexual Orientation Identity Development of Gay and Bisexual Male Adolescents

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