Using mobile technology to engage sexual and gender minorities in clinical research
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...
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| Veröffentlicht in: | PloS one 2019-05, Vol.14 (5), p.e0216282-e0216282 |
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| creator | Lunn, Mitchell R Capriotti, Matthew R Flentje, Annesa Bibbins-Domingo, Kirsten Pletcher, Mark J Triano, Antony J Sooksaman, Chollada Frazier, Jeffrey Obedin-Maliver, Juno |
| description | 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. |
| doi_str_mv | 10.1371/journal.pone.0216282 |
| format | Article |
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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.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0216282</identifier><identifier>PMID: 31048870</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Adolescent ; Adult ; Aged ; Analysis ; Applications programs ; At risk populations ; Biology and Life Sciences ; Clinical trials ; Cohort analysis ; Computer and Information Sciences ; Crowdsourcing ; Data collection ; Demographics ; Epidemiology ; Equality ; Female ; Gender aspects ; Gender Identity ; Geographical locations ; Gynecology ; Health aspects ; Health care ; Health care disparities ; Health disparities ; Health promotion ; Health surveys ; Humans ; Internal medicine ; Internet ; Internet access ; Longitudinal Studies ; Male ; Medical research ; Medically uninsured persons ; Medicine ; Medicine and Health Sciences ; Middle Aged ; Minorities ; Minority & ethnic groups ; Mobile Applications ; Mobile computing ; Nephrology ; Obstetrics ; Polls & surveys ; Population ; Population studies ; Research and Analysis Methods ; Research design ; Sexual and Gender Minorities ; Sexual behavior ; Sexual minorities ; Sexual orientation ; Smart phones ; Smartphones ; Social Sciences ; Studies ; Technology ; Transgender persons</subject><ispartof>PloS one, 2019-05, Vol.14 (5), p.e0216282-e0216282</ispartof><rights>COPYRIGHT 2019 Public Library of Science</rights><rights>This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication: https://creativecommons.org/publicdomain/zero/1.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c692t-1afaee2b146a7db38f43a4543c5aec799cbd8097cb418c02f3316f9aab7649073</citedby><cites>FETCH-LOGICAL-c692t-1afaee2b146a7db38f43a4543c5aec799cbd8097cb418c02f3316f9aab7649073</cites><orcidid>0000-0002-0945-2842 ; 0000-0002-0068-0814</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6497300/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6497300/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,2096,2915,23845,27901,27902,53766,53768,79343,79344</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/31048870$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Lunn, Mitchell R</creatorcontrib><creatorcontrib>Capriotti, Matthew R</creatorcontrib><creatorcontrib>Flentje, Annesa</creatorcontrib><creatorcontrib>Bibbins-Domingo, Kirsten</creatorcontrib><creatorcontrib>Pletcher, Mark J</creatorcontrib><creatorcontrib>Triano, Antony J</creatorcontrib><creatorcontrib>Sooksaman, Chollada</creatorcontrib><creatorcontrib>Frazier, Jeffrey</creatorcontrib><creatorcontrib>Obedin-Maliver, Juno</creatorcontrib><title>Using mobile technology to engage sexual and gender minorities in clinical research</title><title>PloS one</title><addtitle>PLoS One</addtitle><description>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.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Aged</subject><subject>Analysis</subject><subject>Applications programs</subject><subject>At risk populations</subject><subject>Biology and Life Sciences</subject><subject>Clinical trials</subject><subject>Cohort analysis</subject><subject>Computer and Information Sciences</subject><subject>Crowdsourcing</subject><subject>Data collection</subject><subject>Demographics</subject><subject>Epidemiology</subject><subject>Equality</subject><subject>Female</subject><subject>Gender aspects</subject><subject>Gender Identity</subject><subject>Geographical locations</subject><subject>Gynecology</subject><subject>Health aspects</subject><subject>Health care</subject><subject>Health care disparities</subject><subject>Health disparities</subject><subject>Health promotion</subject><subject>Health surveys</subject><subject>Humans</subject><subject>Internal medicine</subject><subject>Internet</subject><subject>Internet access</subject><subject>Longitudinal Studies</subject><subject>Male</subject><subject>Medical research</subject><subject>Medically uninsured persons</subject><subject>Medicine</subject><subject>Medicine and Health Sciences</subject><subject>Middle Aged</subject><subject>Minorities</subject><subject>Minority & ethnic groups</subject><subject>Mobile Applications</subject><subject>Mobile computing</subject><subject>Nephrology</subject><subject>Obstetrics</subject><subject>Polls & surveys</subject><subject>Population</subject><subject>Population studies</subject><subject>Research and Analysis Methods</subject><subject>Research design</subject><subject>Sexual and Gender Minorities</subject><subject>Sexual behavior</subject><subject>Sexual minorities</subject><subject>Sexual orientation</subject><subject>Smart 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Chollada</au><au>Frazier, Jeffrey</au><au>Obedin-Maliver, Juno</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Using mobile technology to engage sexual and gender minorities in clinical research</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2019-05-02</date><risdate>2019</risdate><volume>14</volume><issue>5</issue><spage>e0216282</spage><epage>e0216282</epage><pages>e0216282-e0216282</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><abstract>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.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>31048870</pmid><doi>10.1371/journal.pone.0216282</doi><tpages>e0216282</tpages><orcidid>https://orcid.org/0000-0002-0945-2842</orcidid><orcidid>https://orcid.org/0000-0002-0068-0814</orcidid><oa>free_for_read</oa></addata></record> |
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| issn | 1932-6203 1932-6203 |
| language | eng |
| recordid | cdi_plos_journals_2219679885 |
| source | MEDLINE; DOAJ Directory of Open Access Journals; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; PubMed Central; Free Full-Text Journals in Chemistry; Public Library of Science (PLoS) |
| subjects | Adolescent Adult Aged Analysis Applications programs At risk populations Biology and Life Sciences Clinical trials Cohort analysis Computer and Information Sciences Crowdsourcing Data collection Demographics Epidemiology Equality Female Gender aspects Gender Identity Geographical locations Gynecology Health aspects Health care Health care disparities Health disparities Health promotion Health surveys Humans Internal medicine Internet Internet access Longitudinal Studies Male Medical research Medically uninsured persons Medicine Medicine and Health Sciences Middle Aged Minorities Minority & ethnic groups Mobile Applications Mobile computing Nephrology Obstetrics Polls & surveys Population Population studies Research and Analysis Methods Research design Sexual and Gender Minorities Sexual behavior Sexual minorities Sexual orientation Smart phones Smartphones Social Sciences Studies Technology Transgender persons |
| title | Using mobile technology to engage sexual and gender minorities in clinical research |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-02-02T03%3A11%3A33IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-gale_plos_&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Using%20mobile%20technology%20to%20engage%20sexual%20and%20gender%20minorities%20in%20clinical%20research&rft.jtitle=PloS%20one&rft.au=Lunn,%20Mitchell%20R&rft.date=2019-05-02&rft.volume=14&rft.issue=5&rft.spage=e0216282&rft.epage=e0216282&rft.pages=e0216282-e0216282&rft.issn=1932-6203&rft.eissn=1932-6203&rft_id=info:doi/10.1371/journal.pone.0216282&rft_dat=%3Cgale_plos_%3EA584225362%3C/gale_plos_%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=2219679885&rft_id=info:pmid/31048870&rft_galeid=A584225362&rft_doaj_id=oai_doaj_org_article_b98f4fa125484497a71b75f89fa99ba2&rfr_iscdi=true |