{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,1]],"date-time":"2025-11-01T17:25:57Z","timestamp":1762017957655},"reference-count":33,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2016,12,11]],"date-time":"2016-12-11T00:00:00Z","timestamp":1481414400000},"content-version":"vor","delay-in-days":100,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2017,3,1]]},"abstract":"<jats:p>Background: Implementation of patient preferences for use of electronic health records for research has been traditionally limited to identifiable data. Tiered e-consent for use of de-identified data has traditionally been deemed unnecessary or impractical for implementation in clinical settings.<\/jats:p>\n               <jats:p>Methods: We developed a web-based tiered informed consent tool called informed consent for clinical data and bio-sample use for research (iCONCUR) that honors granular patient preferences for use of electronic health record data in research. We piloted this tool in 4 outpatient clinics of an academic medical center.<\/jats:p>\n               <jats:p>Results: Of patients offered access to iCONCUR, 394 agreed to participate in this study, among whom 126 patients accessed the website to modify their records according to data category and data recipient. The majority consented to share most of their data and specimens with researchers. Willingness to share was greater among participants from an Human Immunodeficiency Virus (HIV) clinic than those from internal medicine clinics. The number of items declined was higher for for-profit institution recipients. Overall, participants were most willing to share demographics and body measurements and least willing to share family history and financial data. Participants indicated that having granular choices for data sharing was appropriate, and that they liked being informed about who was using their data for what purposes, as well as about outcomes of the research.<\/jats:p>\n               <jats:p>Conclusion: This study suggests that a tiered electronic informed consent system is a workable solution that respects patient preferences, increases satisfaction, and does not significantly affect participation in research.<\/jats:p>","DOI":"10.1093\/jamia\/ocw115","type":"journal-article","created":{"date-parts":[[2016,9,3]],"date-time":"2016-09-03T00:19:18Z","timestamp":1472861958000},"page":"380-387","source":"Crossref","is-referenced-by-count":45,"title":["iCONCUR: informed consent for clinical data and bio-sample use for research"],"prefix":"10.1093","volume":"24","author":[{"given":"Hyeoneui","family":"Kim","sequence":"first","affiliation":[{"name":"Department of Biomedical Informatics, University of California San Diego"}]},{"given":"Elizabeth","family":"Bell","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, University of California San Diego"}]},{"given":"Jihoon","family":"Kim","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, University of California San Diego"}]},{"given":"Amy","family":"Sitapati","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, University of California San Diego"},{"name":"Department of Medicine, University of California San Diego"}]},{"given":"Joe","family":"Ramsdell","sequence":"additional","affiliation":[{"name":"Department of Medicine, University of California San Diego"}]},{"given":"Claudiu","family":"Farcas","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, University of California San Diego"}]},{"given":"Dexter","family":"Friedman","sequence":"additional","affiliation":[{"name":"Department of Computer Science and Engineering, University of California San Diego"}]},{"given":"Stephanie Feudjio","family":"Feupe","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, University of California San Diego"}]},{"given":"Lucila","family":"Ohno-Machado","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, University of California San Diego"},{"name":"Clinical and Translational Research Institute, University of California San Diego"}]}],"member":"286","published-online":{"date-parts":[[2016,9,2]]},"reference":[{"issue":"3","key":"2020110612434065000_ocw115-B1","doi-asserted-by":"crossref","first-page":"e58603","DOI":"10.1371\/journal.pone.0058603","article-title":"Interactive informed consent: randomized comparison with paper consents","volume":"8","author":"Cummings","year":"2013","journal-title":"PLoS One"},{"issue":"6","key":"2020110612434065000_ocw115-B2","doi-asserted-by":"crossref","first-page":"423","DOI":"10.1089\/bio.2014.0045","article-title":"Traditional and electronic informed consent for biobanking: a survey of U.S. biobanks","volume":"12","author":"Simon","year":"2014","journal-title":"Biopreservation and biobanking"},{"issue":"4","key":"2020110612434065000_ocw115-B3","doi-asserted-by":"crossref","first-page":"604","DOI":"10.1177\/1740774513491338","article-title":"Managing clinical research permissions electronically: A novel approach to enhancing recruitment and managing consents","volume":"10","author":"Sanderson","year":"2013","journal-title":"Clinical Trials"},{"key":"2020110612434065000_ocw115-B4","doi-asserted-by":"crossref","first-page":"141","DOI":"10.1038\/ejhg.2014.71","article-title":"Dynamic consent: a patient interface for twenty-first century research networks","volume":"23","author":"Kaye","year":"2015","journal-title":"Eur J Hum Genet"},{"key":"2020110612434065000_ocw115-B5"},{"key":"2020110612434065000_ocw115-B6","author":"NCVHS National Committee on Vital and Health Statistics"},{"issue":"1","key":"2020110612434065000_ocw115-B7","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1136\/amiajnl-2012-001023","article-title":"Patients want granular privacy control over health information in electronic medical records","volume":"20","author":"Caine","year":"2013","journal-title":"J Am Med Inform Assoc"},{"key":"2020110612434065000_ocw115-B8","first-page":"1699","article-title":"Sharing my health data: a survey of data sharing preferences of healthy individuals","volume":"2014","author":"Bell","year":"2014","journal-title":"AMIA Annual Symposium Proceedings; 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