{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T22:27:22Z","timestamp":1787956042087,"version":"build-2784847793"},"reference-count":54,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2023,4,16]],"date-time":"2023-04-16T00:00:00Z","timestamp":1681603200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","award":["National Institutes of Health (NIH) 1R21HG011802\u20100"],"award-info":[{"award-number":["National Institutes of Health (NIH) 1R21HG011802\u20100"]}],"id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2023,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Technological improvements alone have not led to the integration of genomic medicine across a broad range of diseases and populations. For genomic medicine to be successfully implemented across specialties and conditions, the challenges patients and caregivers experience need to be identified using a multi\u2010faceted understanding of the context in which these obstacles occur and how they are experienced. Individuals affected by rare conditions, like Ehlers\u2013Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), express numerous challenges with accessing genomic medicine. Many patients living with rare diseases seek information and find comfort in online health communities.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Social media conversations facilitated through online health communities are windows into patients' and caregivers' authentic experiences. To date, no other study has examined genomic medicine barriers by analysing the content of social media posts, yet the novel methodological approach of social media listening permits the analysis of virtual, organic conversations about lived experiences.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results\/Conclusions<\/jats:title><jats:p>Using a modified social\u2013ecological model, this study found that social\u2013structural and interpersonal barriers most frequently impede access to genomic medicine for patients and caregivers living with EDS and HSD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patient or Public Contribution<\/jats:title><jats:p>Data were retrieved through social media conversations facilitated through publicly accessible health communities through Inspire, an online health community. Social media listening permits the analysis of virtual, organic conversations about lived experiences.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hex.13755","type":"journal-article","created":{"date-parts":[[2023,4,17]],"date-time":"2023-04-17T04:45:29Z","timestamp":1681706729000},"page":"1524-1535","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Using social media listening to understand barriers to genomic medicine for those living with Ehlers\u2013Danlos syndromes and hypermobility spectrum disorders"],"prefix":"10.1111","volume":"26","author":[{"given":"Erika","family":"Kline","sequence":"first","affiliation":[{"name":"Inspire Arlington Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5659-9874","authenticated-orcid":false,"given":"Amanda Leigh","family":"Garrett","sequence":"additional","affiliation":[{"name":"Inspire Arlington Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Brownstein","sequence":"additional","affiliation":[{"name":"Division of Genetics and Genomics, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School Boston Children's Hospital Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sonja","family":"Ziniel","sequence":"additional","affiliation":[{"name":"University of Colorado School of Medicine, Department of Pediatrics, Section of Hospital Medicine Children's Hospital Colorado Anschutz Medical Campus Aurora Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2912-9495","authenticated-orcid":false,"given":"Erica","family":"Payton","sequence":"additional","affiliation":[{"name":"Inspire Arlington Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aleah","family":"Goldin","sequence":"additional","affiliation":[{"name":"Inspire Arlington Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen","family":"Hoffman","sequence":"additional","affiliation":[{"name":"Inspire Arlington Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judy","family":"Chandler","sequence":"additional","affiliation":[{"name":"Inspire Arlington Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shani","family":"Weber","sequence":"additional","affiliation":[{"name":"The Ehlers\u2010Danlos Society 1732 New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,4,16]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-021-06961-9"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2021.10275"},{"key":"e_1_2_12_4_1","unstructured":"United States Census Bureau. 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