{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,21]],"date-time":"2026-05-21T04:29:45Z","timestamp":1779337785313,"version":"3.51.4"},"reference-count":37,"publisher":"Oxford University Press (OUP)","issue":"6","license":[{"start":{"date-parts":[[2023,5,4]],"date-time":"2023-05-04T00:00:00Z","timestamp":1683158400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"DOI":"10.13039\/100000002","name":"NIH","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","award":["R01HG011066"],"award-info":[{"award-number":["R01HG011066"]}],"id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["K01AG076865"],"award-info":[{"award-number":["K01AG076865"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,5,19]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>This qualitative study aimed to understand patient and researcher perspectives regarding consent and data-sharing preferences for research and a patient-centered system to manage consent and data-sharing preferences.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Materials and Methods<\/jats:title>\n                  <jats:p>We conducted focus groups with patient and researcher participants recruited from three academic health centers via snowball sampling. Discussions focused on perspectives on the use of electronic health record (EHR) data for research. Themes were identified through consensus coding, starting from an exploratory framework.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>We held two focus groups with patients (n\u2009=\u200912 patients) and two with researchers (n\u2009=\u20098 researchers). We identified two patient themes (1\u20132), one theme common to patients and researchers (3), and two researcher themes (4\u20135). Themes included (1) motivations for sharing EHR data, (2) perspectives on the importance of data-sharing transparency, (3) individual control of personal EHR data sharing, (4) how EHR data benefits research, and (5) challenges researchers face using EHR data.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Discussion<\/jats:title>\n                  <jats:p>Patients expressed a tension between the benefits of their data being used in studies to benefit themselves\/others and avoiding risk by limiting data access. Patients resolved this tension by acknowledging they would often share their data but wanted greater transparency on its use. Researchers expressed concern about incorporating bias into datasets if patients opted out.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>A research consent and data-sharing platform must consider two competing goals: empowering patients to have more control over their data and maintaining the integrity of secondary data sources. Health systems and researchers should increase trust-building efforts with patients to engender trust in data access and use.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/jamia\/ocad058","type":"journal-article","created":{"date-parts":[[2023,5,4]],"date-time":"2023-05-04T20:47:21Z","timestamp":1683233241000},"page":"1137-1149","source":"Crossref","is-referenced-by-count":11,"title":["Patient and researcher stakeholder preferences for use of electronic health record data: a qualitative study to guide the design and development of a platform to honor patient preferences"],"prefix":"10.1093","volume":"30","author":[{"given":"Brad","family":"Morse","sequence":"first","affiliation":[{"name":"Division of General Internal Medicine, Department of Medicine, University of Colorado\u2014Anschutz Medical Campus , Denver, Colorado, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5766-3938","authenticated-orcid":false,"given":"Katherine 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USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lucila","family":"Ohno-Machado","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, University of California-San Diego , La Jolla, California, USA"},{"name":"Section of Biomedical Informatics & Data Science, Yale School of Medicine , New Haven, Connecticut, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Selene S","family":"Mak","sequence":"additional","affiliation":[{"name":"Center for the Study of Healthcare Innovation, Implementation and Policy (CSHIIP), VA Greater Los Angeles Healthcare System , Los Angeles, California, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8157-7586","authenticated-orcid":false,"given":"Michelle S","family":"Keller","sequence":"additional","affiliation":[{"name":"Division of General Internal Medicine-Health Services Research, Department of Medicine, Cedars-Sinai Medical Center , 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