{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T18:57:13Z","timestamp":1777661833830,"version":"3.51.4"},"reference-count":49,"publisher":"Oxford University Press (OUP)","issue":"8-9","license":[{"start":{"date-parts":[[2019,6,4]],"date-time":"2019-06-04T00:00:00Z","timestamp":1559606400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"DOI":"10.13039\/100006093","name":"Patient-Centered Outcomes Research Institute","doi-asserted-by":"publisher","award":["PPRN-1501-26848"],"award-info":[{"award-number":["PPRN-1501-26848"]}],"id":[{"id":"10.13039\/100006093","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Ruth L. Kirschstein NRSA Institutional Training","award":["T32DK007219"],"award-info":[{"award-number":["T32DK007219"]}]},{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"publisher","award":["K23DA039800"],"award-info":[{"award-number":["K23DA039800"]}],"id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000026","name":"National Institute on Drug Abuse","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000026","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Clinical Research Training Fellowship"},{"name":"American Academy of Neurology and Tourette Association of America"},{"name":"Veterans Affairs Women\u2019s Health Clinical Research"},{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"publisher","award":["K12DK111028"],"award-info":[{"award-number":["K12DK111028"]}],"id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2019,8,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Materials and Methods<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>We built a secure digital research platform with engaging functionality that engaged SGM people and recruited and retained 13\u00a0731 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\u2014 including questions about sensitive and stigmatizing topics\u2014 to create a data resource and join a cohort for ongoing SGM health research.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Discussion<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/jamia\/ocz082","type":"journal-article","created":{"date-parts":[[2019,5,10]],"date-time":"2019-05-10T11:28:36Z","timestamp":1557487716000},"page":"737-748","source":"Crossref","is-referenced-by-count":107,"title":["A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study\u2013\u2014The PRIDE Study"],"prefix":"10.1093","volume":"26","author":[{"given":"Mitchell R","family":"Lunn","sequence":"first","affiliation":[{"name":"Division of Nephrology, Department of Medicine, Stanford University School of Medicine, Stanford, California, USA"},{"name":"The PRIDE Study\/PRIDEnet, Stanford University School of Medicine, Palo Alto, California, USA"}]},{"given":"Micah","family":"Lubensky","sequence":"additional","affiliation":[{"name":"The PRIDE Study\/PRIDEnet, Stanford University School of Medicine, Palo Alto, California, USA"},{"name":"Department of Community Health Systems, School of Nursing, University of California, San Francisco, San Francisco, California, USA"}]},{"given":"Carolyn","family":"Hunt","sequence":"additional","affiliation":[{"name":"The PRIDE Study\/PRIDEnet, Stanford University School of Medicine, Palo Alto, California, USA"},{"name":"Department of Community Health Systems, School of Nursing, University of California, San Francisco, San Francisco, California, USA"}]},{"given":"Annesa","family":"Flentje","sequence":"additional","affiliation":[{"name":"The PRIDE Study\/PRIDEnet, Stanford University School of Medicine, Palo Alto, California, USA"},{"name":"Department of Community Health Systems, School of Nursing, University of California, San Francisco, San Francisco, California, USA"}]},{"given":"Matthew R","family":"Capriotti","sequence":"additional","affiliation":[{"name":"The PRIDE Study\/PRIDEnet, Stanford University School of Medicine, Palo Alto, California, USA"},{"name":"Department of Psychology, San Jose State University, San Jose, California, USA"}]},{"given":"Chollada","family":"Sooksaman","sequence":"additional","affiliation":[{"name":"THREAD Research, Tustin, California, USA"}]},{"given":"Todd","family":"Harnett","sequence":"additional","affiliation":[{"name":"THREAD Research, Tustin, California, USA"}]},{"given":"Del","family":"Currie","sequence":"additional","affiliation":[{"name":"Analog Republic, London, UK"}]},{"given":"Chris","family":"Neal","sequence":"additional","affiliation":[{"name":"Analog Republic, London, UK"}]},{"given":"Juno","family":"Obedin-Maliver","sequence":"additional","affiliation":[{"name":"The PRIDE Study\/PRIDEnet, Stanford University School of Medicine, Palo Alto, California, USA"},{"name":"Department of Obstetrics and Gynecology, Stanford University School of Medicine, Stanford, California, USA"}]}],"member":"286","published-online":{"date-parts":[[2019,6,4]]},"reference":[{"key":"2020110613082951700_ocz082-B1"},{"key":"2020110613082951700_ocz082-B2","author":"P\u00e9rez-Stable"},{"issue":"1","key":"2020110613082951700_ocz082-B3","doi-asserted-by":"crossref","first-page":"15","DOI":"10.1089\/lgbt.2018.0122","article-title":"Severity of alcohol, tobacco, and drug use disorders among sexual minority individuals and their \u201cnot sure\u201d counterparts","volume":"6","author":"Boyd","year":"2019","journal-title":"LGBT Health"},{"issue":"7","key":"2020110613082951700_ocz082-B4","doi-asserted-by":"crossref","first-page":"779","DOI":"10.1176\/appi.ps.201500209","article-title":"Severe mental illness in LGBT populations: a scoping review","volume":"67","author":"Kidd","year":"2016","journal-title":"Psychiatr Serv"},{"issue":"2","key":"2020110613082951700_ocz082-B5","doi-asserted-by":"crossref","first-page":"143","DOI":"10.1089\/jwh.2018.7411","article-title":"Gender and frequent mental distress: comparing transgender and non-transgender individuals\u2019 self-rated mental health","volume":"28","author":"Crissman","year":"2019","journal-title":"J Womens Health"},{"issue":"6","key":"2020110613082951700_ocz082-B6","doi-asserted-by":"crossref","DOI":"10.1007\/s11920-016-0697-y","article-title":"The mental health of older LGBT adults","volume":"18","author":"Yarns","year":"2016","journal-title":"Curr Psychiatry Rep"},{"issue":"2","key":"2020110613082951700_ocz082-B7","doi-asserted-by":"crossref","first-page":"116","DOI":"10.1089\/jwh.2015.5677","article-title":"LGBT identity, untreated depression, and unmet need for mental health services by sexual minority women and trans-identified people","volume":"26","author":"Steele","year":"2017","journal-title":"J Womens Health"},{"issue":"1","key":"2020110613082951700_ocz082-B8","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1089\/lgbt.2014.0056","article-title":"Screening for asymptomatic extragenital gonorrhea and chlamydia in men who have sex with men: significance, recommendations, and options for overcoming barriers to testing","volume":"2","author":"Lutz","year":"2015","journal-title":"LGBT Health"},{"key":"2020110613082951700_ocz082-B9","author":"Centers for Disease Control and Prevention","year":"2017"},{"issue":"2","key":"2020110613082951700_ocz082-B10","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1080\/00918369.2017.1311555","article-title":"Health care needs and care utilization among lesbian, gay, bisexual, and transgender populations in New Jersey","volume":"65","author":"Qureshi","year":"2018","journal-title":"J Homosex"},{"key":"2020110613082951700_ocz082-B11","doi-asserted-by":"crossref","first-page":"S105","DOI":"10.1093\/geront\/gnw186","article-title":"Health care engagement among LGBT older adults: the role of depression diagnosis and symptomatology","volume":"57(suppl 1)","author":"Shiu","year":"2017","journal-title":"Gerontologist"},{"issue":"6","key":"2020110613082951700_ocz082-B12","doi-asserted-by":"crossref","first-page":"637","DOI":"10.1016\/j.amjms.2016.05.008","article-title":"Preventive and primary care for lesbian, gay and bisexual patients","volume":"352","author":"Floyd","year":"2016","journal-title":"Am J Med Sci"},{"issue":"1","key":"2020110613082951700_ocz082-B13","doi-asserted-by":"crossref","first-page":"e0146139.","DOI":"10.1371\/journal.pone.0146139","article-title":"Outness, stigma, and primary health care utilization among rural LGBT populations","volume":"11","author":"Whitehead","year":"2016","journal-title":"Plos One"},{"key":"2020110613082951700_ocz082-B14","volume-title":"When Health Care Isn\u2019t Caring: Lambda Legal\u2019s Survey of Discrimination against LGBT People and People with HIV","author":"Lambda Legal","year":"2010"},{"key":"2020110613082951700_ocz082-B15","volume-title":"The Report of the 2015 US Transgender Survey","author":"James","year":"2016"},{"key":"2020110613082951700_ocz082-B16","author":"Movement Advancement Project"},{"key":"2020110613082951700_ocz082-B17","author":"Movement Advancement Project"},{"key":"2020110613082951700_ocz082-B18","author":"Newport"},{"key":"2020110613082951700_ocz082-B19","author":"Thompson"},{"key":"2020110613082951700_ocz082-B20","author":"Committee on Lesbian, Gay, Bisexual, and"},{"issue":"1","key":"2020110613082951700_ocz082-B21","doi-asserted-by":"crossref","first-page":"66","DOI":"10.1093\/jamia\/ocy137","article-title":"Planning and implementing sexual orientation and gender identity data collection in electronic health records","volume":"26","author":"Grasso","year":"2019","journal-title":"J Am Med Inform Assoc"},{"issue":"7","key":"2020110613082951700_ocz082-B22","doi-asserted-by":"crossref","first-page":"e0131521.","DOI":"10.1371\/journal.pone.0131521","article-title":"How to establish and follow up a large prospective cohort study in the 21st century\u2014lessons from UK COSMOS","volume":"10","author":"Toledano","year":"2015","journal-title":"Plos One"},{"issue":"3","key":"2020110613082951700_ocz082-B23","doi-asserted-by":"crossref","first-page":"279","DOI":"10.2105\/AJPH.41.3.279","article-title":"Epidemiological approaches to heart disease: the Framingham study","volume":"41","author":"Dawber","year":"1951","journal-title":"Am J Public Health Nations Health"},{"issue":"6","key":"2020110613082951700_ocz082-B24","first-page":"1039","article-title":"The Nurses\u2019 health study","volume":"78","author":"Belanger","year":"1978","journal-title":"Am J Nurs"},{"issue":"7726","key":"2020110613082951700_ocz082-B25","doi-asserted-by":"crossref","first-page":"203.","DOI":"10.1038\/s41586-018-0579-z","article-title":"The UK biobank resource with deep phenotyping and genomic data","volume":"562","author":"Bycroft","year":"2018","journal-title":"Nature"},{"key":"2020110613082951700_ocz082-B26","author":"National Institutes of Health"},{"issue":"2","key":"2020110613082951700_ocz082-B27","doi-asserted-by":"crossref","first-page":"220","DOI":"10.1080\/00224499.2013.867924","article-title":"Feasibility, acceptability, and initial efficacy of an online sexual health promotion program for LGBT youth: the Queer Sex Ed intervention","volume":"52","author":"Mustanski","year":"2015","journal-title":"J Sex Res"},{"issue":"3","key":"2020110613082951700_ocz082-B28","doi-asserted-by":"crossref","first-page":"437","DOI":"10.1080\/00918369.2016.1124707","article-title":"Zero feet away: the digital geography of gay social media","volume":"63","author":"Roth","year":"2016","journal-title":"J Homosex"},{"issue":"12","key":"2020110613082951700_ocz082-B29","doi-asserted-by":"crossref","first-page":"e10683.","DOI":"10.2196\/10683","article-title":"Meeting sexual partners through internet sites and smartphone apps in Australia: national representative study","volume":"20","author":"Smith","year":"2018","journal-title":"J Med Internet Res"},{"issue":"4","key":"2020110613082951700_ocz082-B30","doi-asserted-by":"crossref","first-page":"211","DOI":"10.1089\/apc.2012.0404","article-title":"Putting prevention in their pockets: developing mobile phone-based HIV interventions for black men who have sex with men","volume":"27","author":"Muessig","year":"2013","journal-title":"AIDS Patient Care STDS"},{"issue":"3","key":"2020110613082951700_ocz082-B31","doi-asserted-by":"crossref","first-page":"e22.","DOI":"10.2196\/humanfactors.7392","article-title":"Usability of a culturally informed mHealth intervention for symptoms of anxiety and depression: feedback from young sexual minority men","volume":"4","author":"Fleming","year":"2017","journal-title":"JMIR Hum Factors"},{"issue":"2","key":"2020110613082951700_ocz082-B32","doi-asserted-by":"crossref","first-page":"e9.","DOI":"10.2196\/resprot.6520","article-title":"Feasibility of ecological momentary assessment of daily sexting and substance use among young adult African American gay and bisexual men: a pilot study","volume":"6","author":"Smiley","year":"2017","journal-title":"JMIR Res Protoc"},{"key":"2020110613082951700_ocz082-B33","article-title":"Using mobile technology to engage sexual and gender minorities in clinical research","author":"Lunn","journal-title":"Plos One"},{"key":"2020110613082951700_ocz082-B34","author":"Schwaber"},{"key":"2020110613082951700_ocz082-B35","year":"2018"},{"key":"2020110613082951700_ocz082-B36","year":"23, 2019"},{"key":"2020110613082951700_ocz082-B37","author":"DelloStritto L. Bisexuals DO Exist! And They\u2019re Joining The PRIDE Study","year":"2018"},{"key":"2020110613082951700_ocz082-B38","year":"2017"},{"key":"2020110613082951700_ocz082-B39","volume-title":"How Many Adults Identify as Transgender in the United States","author":"Flores","year":"2016"},{"issue":"1","key":"2020110613082951700_ocz082-B40","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1007\/s13178-015-0212-y","article-title":"Recruiting a US national sample of HIV-negative gay and bisexual men to complete at-home self-administered HIV\/STI testing and surveys: challenges and opportunities","volume":"13","author":"Grov","year":"2016","journal-title":"Sex Res Soc Policy Berkeley"},{"issue":"2","key":"2020110613082951700_ocz082-B41","doi-asserted-by":"crossref","first-page":"e38.","DOI":"10.2196\/jmir.1797","article-title":"Bias in online recruitment and retention of racial and ethnic minority men who have sex with men","volume":"13","author":"Sullivan","year":"2011","journal-title":"J Med Internet Res"},{"key":"2020110613082951700_ocz082-B42","volume-title":"Overview of Race and Hispanic Origin: 2010","author":"Humes","year":"2011"},{"key":"2020110613082951700_ocz082-B43","year":"2018"},{"issue":"4","key":"2020110613082951700_ocz082-B44","doi-asserted-by":"crossref","first-page":"579","DOI":"10.15288\/jsa.2006.67.579","article-title":"Age and racial\/ethnic differences in drinking and drinking-related problems in a community sample of lesbians","volume":"67","author":"Hughes","year":"2006","journal-title":"J Stud Alcohol"},{"issue":"1","key":"2020110613082951700_ocz082-B45","doi-asserted-by":"crossref","first-page":"383","DOI":"10.1007\/s10508-018-1258-8","article-title":"Three reasons to consider the role of tiredness in sexual risk-taking among gay and bisexual men","volume":"48","author":"Millar","year":"2019","journal-title":"Arch Sex Behav"},{"key":"2020110613082951700_ocz082-B46","doi-asserted-by":"crossref","first-page":"126","DOI":"10.1016\/j.socscimed.2018.05.020","article-title":"\u201cLike finding a unicorn\u201d: healthcare preferences among lesbian, gay, and bisexual people in the United States","volume":"208","author":"Martos","year":"2018","journal-title":"Soc Sci Med"},{"key":"2020110613082951700_ocz082-B47","doi-asserted-by":"crossref","first-page":"S1","DOI":"10.1093\/geront\/gnw212","article-title":"The science of conducting research with LGBT older adults- an introduction to aging with pride: national health, aging, and sexuality\/gender study (NHAS)","volume":"57(Suppl 1)","author":"Fredriksen-Goldsen","year":"2017","journal-title":"Gerontologist"},{"key":"2020110613082951700_ocz082-B48","doi-asserted-by":"crossref","first-page":"41","DOI":"10.1016\/j.drugpo.2016.11.012","article-title":"Following lives undergoing change (Flux) study: implementation and baseline prevalence of drug use in an online cohort study of gay and bisexual men in Australia","volume":"41","author":"Hammoud","year":"2017","journal-title":"Int J Drug Policy"},{"issue":"1","key":"2020110613082951700_ocz082-B49","doi-asserted-by":"crossref","first-page":"14","DOI":"10.1093\/her\/cyp046","article-title":"Interviewer effects in public health surveys","volume":"25","author":"Davis","year":"2010","journal-title":"Health Educ Res"}],"container-title":["Journal of the American Medical Informatics Association"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/academic.oup.com\/jamia\/article-pdf\/26\/8-9\/737\/34151905\/ocz082.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"http:\/\/academic.oup.com\/jamia\/article-pdf\/26\/8-9\/737\/34151905\/ocz082.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,11,6]],"date-time":"2020-11-06T19:21:04Z","timestamp":1604690464000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jamia\/article\/26\/8-9\/737\/5509461"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,6,4]]},"references-count":49,"journal-issue":{"issue":"8-9","published-online":{"date-parts":[[2019,6,4]]},"published-print":{"date-parts":[[2019,8,1]]}},"URL":"https:\/\/doi.org\/10.1093\/jamia\/ocz082","relation":{},"ISSN":["1527-974X"],"issn-type":[{"value":"1527-974X","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2019,8]]},"published":{"date-parts":[[2019,6,4]]}}}