{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T14:39:48Z","timestamp":1780497588106,"version":"3.54.1"},"reference-count":23,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2021,12,6]],"date-time":"2021-12-06T00:00:00Z","timestamp":1638748800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["UL1TR002489"],"award-info":[{"award-number":["UL1TR002489"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2022,3,15]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>Institutions must decide how to manage the use of clinical data to support research while ensuring appropriate protections are in place. Questions about data use and sharing often go beyond what the Health Insurance Portability and Accountability Act of 1996 (HIPAA) considers. In this article, we describe our institution\u2019s governance model and approach. Common questions we consider include (1) Is a request limited to the minimum data necessary to carry the research forward? (2) What plans are there for sharing data externally?, and (3) What impact will the proposed use of data have on patients and the institution? In 2020, 302 of the 319 requests reviewed were approved. The majority of requests were approved in less than 2 weeks, with few or no stipulations. For the remaining requests, the governance committee works with researchers to find solutions to meet their needs while also addressing our collective goal of protecting patients.<\/jats:p>","DOI":"10.1093\/jamia\/ocab259","type":"journal-article","created":{"date-parts":[[2021,11,11]],"date-time":"2021-11-11T12:10:45Z","timestamp":1636632645000},"page":"707-712","source":"Crossref","is-referenced-by-count":15,"title":["Supporting research, protecting data: one institution\u2019s approach to clinical data warehouse governance"],"prefix":"10.1093","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7473-1709","authenticated-orcid":false,"given":"Kellie M","family":"Walters","sequence":"first","affiliation":[{"name":"North Carolina Translational and Clinical Sciences Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3927-5362","authenticated-orcid":false,"given":"Anna","family":"Jojic","sequence":"additional","affiliation":[{"name":"North Carolina Translational and Clinical Sciences Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6840-9756","authenticated-orcid":false,"given":"Emily R","family":"Pfaff","sequence":"additional","affiliation":[{"name":"Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marie","family":"Rape","sequence":"additional","affiliation":[{"name":"North Carolina Translational and Clinical Sciences Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Donald C","family":"Spencer","sequence":"additional","affiliation":[{"name":"Information Services Division, UNC Health, Morrisville, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicholas J","family":"Shaheen","sequence":"additional","affiliation":[{"name":"Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brent","family":"Lamm","sequence":"additional","affiliation":[{"name":"Information Services Division, UNC Health, Morrisville, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Timothy S","family":"Carey","sequence":"additional","affiliation":[{"name":"Division of General Medicine and Clinical Epidemiology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2021,12,6]]},"reference":[{"issue":"4","key":"2022031509045461200_ocab259-B1","doi-asserted-by":"crossref","first-page":"354","DOI":"10.1016\/j.semradonc.2019.05.010","article-title":"The evolving use of electronic health records (EHR) for research","volume":"29","author":"Kim","year":"2019","journal-title":"Semin Radiat Oncol"},{"issue":"1","key":"2022031509045461200_ocab259-B2","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1007\/s00392-016-1025-6","article-title":"Electronic health records to facilitate clinical research","volume":"106","author":"Cowie","year":"2017","journal-title":"Clin Res Cardiol"},{"issue":"21","key":"2022031509045461200_ocab259-B3","doi-asserted-by":"crossref","first-page":"1981","DOI":"10.1056\/NEJMoa2102137","article-title":"Comparative effectiveness of aspirin dosing in cardiovascular disease","volume":"384","author":"Jones","year":"2021","journal-title":"N Engl J Med"},{"issue":"4","key":"2022031509045461200_ocab259-B4","doi-asserted-by":"crossref","first-page":"246","DOI":"10.1017\/cts.2017.301","article-title":"A survey of practices for the use of electronic health records to support research recruitment","volume":"1","author":"Obeid","year":"2017","journal-title":"J Clin Transl Sci"},{"issue":"11","key":"2022031509045461200_ocab259-B5","doi-asserted-by":"crossref","first-page":"741","DOI":"10.7326\/M17-2786","article-title":"Comparative effectiveness and safety of bariatric procedures for weight loss: a pcornet cohort study","volume":"169","author":"Arterburn","year":"2018","journal-title":"Ann Intern Med"},{"key":"2022031509045461200_ocab259-B6","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1197\/jamia.M2273","article-title":"Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper","volume":"14","author":"Safran","year":"2007","journal-title":"J Am Med Inform Assoc"},{"issue":"e2","key":"2022031509045461200_ocab259-B7","doi-asserted-by":"crossref","first-page":"e226\u201331","DOI":"10.1136\/amiajnl-2013-001926","article-title":"Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory","volume":"20","author":"Richesson","year":"2013","journal-title":"J Am Med Inform Assoc"},{"key":"2022031509045461200_ocab259-B8","year":"2021"},{"issue":"1","key":"2022031509045461200_ocab259-B9","doi-asserted-by":"crossref","first-page":"42","DOI":"10.1186\/s12874-019-0686-z","article-title":"Patient perspectives on use of electronic health records for research recruitment","volume":"19","author":"Beskow","year":"2019","journal-title":"BMC Med Res Methodol"},{"key":"2022031509045461200_ocab259-B10","doi-asserted-by":"crossref","first-page":"143","DOI":"10.1016\/j.jbi.2017.05.022","article-title":"Ethics and subsequent use of electronic health record data","volume":"71","author":"Lee","year":"2017","journal-title":"J Biomed Inform"},{"issue":"1","key":"2022031509045461200_ocab259-B11","doi-asserted-by":"crossref","first-page":"157","DOI":"10.1186\/s12911-020-01177-z","article-title":"Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies","volume":"20","author":"Pavlenko","year":"2020","journal-title":"BMC Med Inform Decis Mak"},{"issue":"4","key":"2022031509045461200_ocab259-B12","doi-asserted-by":"crossref","first-page":"230","DOI":"10.1136\/svn-2017-000101","article-title":"Artificial intelligence in healthcare: past, present and future","volume":"2","author":"Jiang","year":"2017","journal-title":"Stroke Vasc Neurol"},{"key":"2022031509045461200_ocab259-B13","doi-asserted-by":"crossref","first-page":"18","DOI":"10.1038\/s41746-018-0029-1","article-title":"Scalable and accurate deep learning with electronic health records","volume":"1","author":"Rajkomar","year":"2018","journal-title":"npj Digital Med"},{"issue":"3","key":"2022031509045461200_ocab259-B14","doi-asserted-by":"crossref","first-page":"427","DOI":"10.1093\/jamia\/ocaa196","article-title":"The National COVID Cohort Collaborative (N3C): rationale, design, infrastructure, and deployment","volume":"28","author":"Haendel","year":"2021","journal-title":"J Am Med Inform Assoc"},{"key":"2022031509045461200_ocab259-B15","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1016\/j.jclinepi.2020.09.036","article-title":"PCORnet\u00ae 2020: current state, accomplishments, and future directions","volume":"129","author":"Forrest","year":"2021","journal-title":"J Clin Epidemiol"},{"issue":"1","key":"2022031509045461200_ocab259-B16","first-page":"1245","article-title":"Leveraging a statewide clinical data warehouse to expand boundaries of the learning health system","volume":"4","author":"Turley","year":"2016","journal-title":"EGEMS (Wash DC)"},{"issue":"02","key":"2022031509045461200_ocab259-B17","doi-asserted-by":"crossref","first-page":"307","DOI":"10.1055\/s-0039-1688477","article-title":"Creation of a multicenter pediatric inpatient data repository derived from electronic health records","volume":"10","author":"Hornik","year":"2019","journal-title":"Appl Clin Inform"},{"issue":"5","key":"2022031509045461200_ocab259-B18","doi-asserted-by":"crossref","first-page":"851","DOI":"10.1016\/j.jpainsymman.2019.07.017","article-title":"Novel data linkages to characterize palliative and end-of-life care: challenges and considerations","volume":"58","author":"McDermott","year":"2019","journal-title":"J Pain Symptom Manage"},{"issue":"6","key":"2022031509045461200_ocab259-B19","doi-asserted-by":"crossref","first-page":"438","DOI":"10.1089\/pop.2019.0089","article-title":"The patient-centered outcomes research network antibiotics and childhood growth study: implementing patient data linkage","volume":"23","author":"Canterberry","year":"2020","journal-title":"Popul Health Manag"},{"key":"2022031509045461200_ocab259-B20","year":"2021"},{"issue":"12","key":"2022031509045461200_ocab259-B21","doi-asserted-by":"crossref","first-page":"1663","DOI":"10.1007\/s11606-012-2313-0","article-title":"Potential unintended consequences of health information exchange","volume":"28","author":"Kuperman","year":"2013","journal-title":"J Gen Intern Med"},{"issue":"4","key":"2022031509045461200_ocab259-B22","doi-asserted-by":"crossref","first-page":"562","DOI":"10.1093\/jamiaopen\/ooz050","article-title":"Implementing a hash-based privacy-preserving record linkage tool in the OneFlorida clinical research network","volume":"2","author":"Bian","year":"2019","journal-title":"JAMIA Open"},{"issue":"5","key":"2022031509045461200_ocab259-B23","doi-asserted-by":"crossref","first-page":"1072","DOI":"10.1093\/jamia\/ocv038","article-title":"Design and implementation of a privacy preserving electronic health record linkage tool in Chicago","volume":"22","author":"Kho","year":"2015","journal-title":"J Am Med Inform Assoc"}],"container-title":["Journal of the American Medical Informatics Association"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/jamia\/article-pdf\/29\/4\/707\/42897545\/ocab259.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jamia\/article-pdf\/29\/4\/707\/42897545\/ocab259.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,3,15]],"date-time":"2022-03-15T09:07:38Z","timestamp":1647335258000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jamia\/article\/29\/4\/707\/6454077"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,12,6]]},"references-count":23,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2021,12,6]]},"published-print":{"date-parts":[[2022,3,15]]}},"URL":"https:\/\/doi.org\/10.1093\/jamia\/ocab259","relation":{},"ISSN":["1527-974X"],"issn-type":[{"value":"1527-974X","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2022,4,1]]},"published":{"date-parts":[[2021,12,6]]}}}