Using mobile technology to engage sexual and gender minorities in clinical research.
Journal
PloS one
ISSN: 1932-6203
Titre abrégé: PLoS One
Pays: United States
ID NLM: 101285081
Informations de publication
Date de publication:
2019
2019
Historique:
received:
27
07
2018
accepted:
17
04
2019
entrez:
4
5
2019
pubmed:
3
5
2019
medline:
15
1
2020
Statut:
epublish
Résumé
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. 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. 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. 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. 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.
Identifiants
pubmed: 31048870
doi: 10.1371/journal.pone.0216282
pii: PONE-D-18-22293
pmc: PMC6497300
doi:
Types de publication
Clinical Trial, Phase I
Journal Article
Multicenter Study
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Research Support, U.S. Gov't, Non-P.H.S.
Langues
eng
Sous-ensembles de citation
IM
Pagination
e0216282Subventions
Organisme : NIDA NIH HHS
ID : K23 DA039800
Pays : United States
Organisme : NIDDK NIH HHS
ID : T32 DK007219
Pays : United States
Organisme : NIDDK NIH HHS
ID : K12 DK111028
Pays : United States
Déclaration de conflit d'intérêts
CS and JF are current employees of THREAD Research. AJT is a former employee of THREAD Research. All other authors have no financial or professional conflicts of interest. This project (including all of the authors) did not receive any financial support from Apple, Incorporated. This does not alter our adherence to PLOS ONE policies on sharing data and materials.
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