{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,15]],"date-time":"2025-10-15T17:49:38Z","timestamp":1760550578524,"version":"3.37.3"},"reference-count":24,"publisher":"Oxford University Press (OUP)","issue":"9","license":[{"start":{"date-parts":[[2018,7,7]],"date-time":"2018-07-07T00:00:00Z","timestamp":1530921600000},"content-version":"vor","delay-in-days":1,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000092","name":"National Library of Medicine","doi-asserted-by":"crossref","award":["R01-LM-012178"],"award-info":[{"award-number":["R01-LM-012178"]}],"id":[{"id":"10.13039\/100000092","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/100000002","name":"NIH","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2018,9,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>The use of electronic health records (EHRs) for research has the potential to improve the diagnosis and treatment of disease, yet contact with patients based on results of EHR phenotyping has received little attention. Researchers will almost certainly discover discrepancies in EHRs that call for resolution and, in some cases, raise the ethical dilemma of whether to contact patients about a potentially undiagnosed or untreated health concern. The objective of this study was to explore patients\u2019 attitudes and opinions about potential contact by researchers who have had access to their EHRs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Materials and methods<\/jats:title><jats:p>We conducted 15 focus groups in four diverse counties in the southeastern United States. We designed vignettes to describe different situations in which researchers conducting a hypothetical study might have reason to consider contact with patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Many patients believed it was important for researchers to take action if they discovered information suggesting a current serious health concern. Relaying the information through patients\u2019 physicians was considered the most appropriate course of action. Across vignettes, there were significant differences between urban and rural sites.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion and conclusions<\/jats:title><jats:p>Researchers may increasingly encounter situations involving contact with patients following EHR phenotyping. They should carefully consider the possibility of such contact when planning their studies, including the time and expertise needed to adjudicate potentially serious discrepancies. Our focus group results are one source of input for the development of ethical approaches to the research use of EHRs.<\/jats:p><\/jats:sec>","DOI":"10.1093\/jamia\/ocy087","type":"journal-article","created":{"date-parts":[[2018,6,7]],"date-time":"2018-06-07T19:10:06Z","timestamp":1528398606000},"page":"1122-1129","source":"Crossref","is-referenced-by-count":12,"title":["Research use of electronic health records: patients\u2019 perspectives on contact by researchers"],"prefix":"10.1093","volume":"25","author":[{"given":"Kathleen M","family":"Brelsford","sequence":"first","affiliation":[{"name":"Center for Biomedical Ethics and Society, and Department of Health Policy, Vanderbilt University Medical Center, Nashville, Tennessee, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan E","family":"Spratt","sequence":"additional","affiliation":[{"name":"Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura M","family":"Beskow","sequence":"additional","affiliation":[{"name":"Center for Biomedical Ethics and Society, and Department of Health Policy, Vanderbilt University Medical Center, Nashville, Tennessee, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2018,7,6]]},"reference":[{"key":"2020110612232886000_ocy087-B1","article-title":"Centers for Disease Control and Prevention. FastStats: Ambulatory Care Use and Physician Visits","volume":"2011","year":"2017","journal-title":"Secondary FastStats: Ambulatory Care Use and Physician Visits"},{"issue":"1","key":"2020110612232886000_ocy087-B2","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1136\/amiajnl-2012-001145","article-title":"Next-generation phenotyping of electronic health records","volume":"20","author":"Hripcsak","year":"2013","journal-title":"J Am Med Inform Assoc"},{"issue":"5","key":"2020110612232886000_ocy087-B3","doi-asserted-by":"crossref","first-page":"503","DOI":"10.1177\/1077558709359007","article-title":"Review: electronic health records and the reliability and validity of quality measures: a review of the literature","volume":"67","author":"Chan","year":"2010","journal-title":"Med Care Res Rev"},{"issue":"e2","key":"2020110612232886000_ocy087-B4","doi-asserted-by":"crossref","first-page":"e319","DOI":"10.1136\/amiajnl-2013-001952","article-title":"A comparison of phenotype definitions for diabetes mellitus","volume":"20","author":"Richesson","year":"2013","journal-title":"J Am Med Inform Assoc"},{"issue":"e1","key":"2020110612232886000_ocy087-B5","doi-asserted-by":"crossref","first-page":"e121","DOI":"10.1093\/jamia\/ocw123","article-title":"Assessing electronic health record phenotypes against gold-standard diagnostic criteria for diabetes mellitus","volume":"24","author":"Spratt","year":"2017","journal-title":"J Am Med Inform Assoc"},{"issue":"3","key":"2020110612232886000_ocy087-B6","first-page":"291","article-title":"The MURDOCK Study: a long-term initiative for disease reclassification through advanced biomarker discovery and integration with electronic health records","volume":"4","author":"Tenenbaum","year":"2012","journal-title":"Am J Transl Res"},{"issue":"3","key":"2020110612232886000_ocy087-B7","doi-asserted-by":"crossref","first-page":"293","DOI":"10.1177\/1077558702059003004","article-title":"Measuring patients' trust in their primary care providers","volume":"59","author":"Hall","year":"2002","journal-title":"Med Care Res Rev"},{"issue":"1","key":"2020110612232886000_ocy087-B8","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1111\/j.1525-1497.2004.21146.x","article-title":"Development and testing of the health care system distrust scale","volume":"19","author":"Rose","year":"2004","journal-title":"J Gen Intern Med"},{"issue":"6","key":"2020110612232886000_ocy087-B9","doi-asserted-by":"crossref","first-page":"727","DOI":"10.1007\/s11606-008-0575-3","article-title":"Development of a revised health care system distrust scale","volume":"23","author":"Shea","year":"2008","journal-title":"J Gen Intern Med"},{"issue":"6","key":"2020110612232886000_ocy087-B10","doi-asserted-by":"crossref","first-page":"2093","DOI":"10.1111\/j.1475-6773.2009.01017.x","article-title":"Mistrust of health care organizations is associated with underutilization of health services","volume":"44","author":"LaVeist","year":"2009","journal-title":"Health Serv Res"},{"issue":"11","key":"2020110612232886000_ocy087-B11","doi-asserted-by":"crossref","first-page":"1048","DOI":"10.1097\/01.mlr.0000228023.37087.cb","article-title":"Measuring trust in medical researchers","volume":"44","author":"Hall","year":"2006","journal-title":"Med Care"},{"key":"2020110612232886000_ocy087-B12","doi-asserted-by":"crossref","DOI":"10.4135\/9781483384436","volume-title":"Applied Thematic Analysis","author":"Guest","year":"2012"},{"issue":"2","key":"2020110612232886000_ocy087-B13","first-page":"31","article-title":"Codebook development for team-based qualitative analysis","volume":"10","author":"MacQueen","year":"1998","journal-title":"Cult Anthropol Methods"},{"issue":"2","key":"2020110612232886000_ocy087-B14","doi-asserted-by":"crossref","first-page":"41","DOI":"10.1016\/j.tig.2010.11.004","article-title":"Disclosure of individual genetic data to research participants: the debate reconsidered","volume":"27","author":"Bredenoord","year":"2011","journal-title":"Trends Genet"},{"issue":"6","key":"2020110612232886000_ocy087-B15","doi-asserted-by":"crossref","first-page":"574","DOI":"10.1161\/CIRCGENETICS.110.958827","article-title":"Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group","volume":"3","author":"Fabsitz","year":"2010","journal-title":"Circ Cardiovasc Genet"},{"issue":"4","key":"2020110612232886000_ocy087-B16","doi-asserted-by":"crossref","first-page":"361","DOI":"10.1038\/gim.2012.23","article-title":"Managing incidental findings and research results in genomic research involving biobanks and archived data sets","volume":"14","author":"Wolf","year":"2012","journal-title":"Genet Med"},{"issue":"3","key":"2020110612232886000_ocy087-B17","doi-asserted-by":"crossref","first-page":"245","DOI":"10.1038\/ejhg.2012.152","article-title":"Population studies: return of research results and incidental findings Policy Statement","volume":"21","author":"Knoppers","year":"2013","journal-title":"Eur J Hum Genet"},{"issue":"6","key":"2020110612232886000_ocy087-B18","doi-asserted-by":"crossref","first-page":"818","DOI":"10.1016\/j.ajhg.2014.04.009","article-title":"Return of genomic results to research participants: the floor, the ceiling, and the choices in between","volume":"94","author":"Jarvik","year":"2014","journal-title":"Am J Hum Genet"},{"issue":"1","key":"2020110612232886000_ocy087-B19","doi-asserted-by":"crossref","first-page":"25","DOI":"10.2307\/3528248","article-title":"The ancillary-care responsibilities of medical researchers. An ethical framework for thinking about the clinical care that researchers owe their subjects","volume":"34","author":"Richardson","year":"2004","journal-title":"Hastings Cent Rep"},{"issue":"4","key":"2020110612232886000_ocy087-B20","doi-asserted-by":"crossref","first-page":"424","DOI":"10.1001\/jama.2009.1076","article-title":"Ancillary care obligations of medical researchers","volume":"302","author":"Dickert","year":"2009","journal-title":"JAMA"},{"issue":"13","key":"2020110612232886000_ocy087-B21","doi-asserted-by":"crossref","first-page":"1491","DOI":"10.1001\/jama.2010.1409","article-title":"What physician-investigators owe patients who participate in research","volume":"304","author":"Litton","year":"2010","journal-title":"JAMA"},{"issue":"2","key":"2020110612232886000_ocy087-B22","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1080\/15265161.2014.990163","article-title":"Collectivizing rescue obligations in bioethics","volume":"15","author":"Garrett","year":"2015","journal-title":"Am J Bioeth"},{"issue":"e2","key":"2020110612232886000_ocy087-B23","doi-asserted-by":"crossref","first-page":"e206","DOI":"10.1136\/amiajnl-2013-002428","article-title":"Electronic health records-driven phenotyping: challenges, recent advances, and perspectives","volume":"20","author":"Pathak","year":"2013","journal-title":"J Am Med Inform Assoc"},{"issue":"1","key":"2020110612232886000_ocy087-B24","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"}],"container-title":["Journal of the American Medical Informatics Association"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/academic.oup.com\/jamia\/article-pdf\/25\/9\/1122\/34150763\/ocy087.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"http:\/\/academic.oup.com\/jamia\/article-pdf\/25\/9\/1122\/34150763\/ocy087.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,8,25]],"date-time":"2022-08-25T06:33:14Z","timestamp":1661409194000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jamia\/article\/25\/9\/1122\/5050198"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,7,6]]},"references-count":24,"journal-issue":{"issue":"9","published-online":{"date-parts":[[2018,7,6]]},"published-print":{"date-parts":[[2018,9,1]]}},"URL":"https:\/\/doi.org\/10.1093\/jamia\/ocy087","relation":{},"ISSN":["1067-5027","1527-974X"],"issn-type":[{"type":"print","value":"1067-5027"},{"type":"electronic","value":"1527-974X"}],"subject":[],"published-other":{"date-parts":[[2018,9]]},"published":{"date-parts":[[2018,7,6]]}}}