{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,16]],"date-time":"2026-02-16T02:53:11Z","timestamp":1771210391270,"version":"3.50.1"},"reference-count":8,"publisher":"Oxford University Press (OUP)","issue":"7","license":[{"start":{"date-parts":[[2023,5,2]],"date-time":"2023-05-02T00:00:00Z","timestamp":1682985600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,6,20]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>The 21st Century Cures Act (Cures Act) information blocking regulations mandate timely patient access to their electronic health information. In most healthcare systems, this technically requires immediate electronic release of test results and clinical notes directly to patients. Patients could potentially be distressed by receiving upsetting results through an electronic portal rather than from a clinician. We present a case from 2018, several years prior to the implementation of the Cures Act. A patient was notified of fetal demise detected by ultrasound through her electronic health record (EHR) patient portal before her clinician received the result. We discuss the patient's ensuing complaint and healthcare system response. This unusual and dramatic case of fetal demise is relevant today because it underscores the importance of involving a patient and family advisory council in decision-making. It also highlights the value of \u201canticipatory guidance\u201d as a routine clinical practice in this era of immediate access to test results.<\/jats:p>","DOI":"10.1093\/jamia\/ocad074","type":"journal-article","created":{"date-parts":[[2023,5,2]],"date-time":"2023-05-02T20:02:44Z","timestamp":1683057764000},"page":"1301-1304","source":"Crossref","is-referenced-by-count":6,"title":["\u201cI don\u2019t think it should take you three days to tell me my baby is dead.\u201d A case of fetal demise: unintended consequences of immediate release of information"],"prefix":"10.1093","volume":"30","author":[{"given":"Stephen","family":"Rotholz","sequence":"first","affiliation":[{"name":"Department of Obstetrics & Gynecology, University of Colorado School of Medicine , Aurora, Colorado, USA"}]},{"given":"Chen-Tan","family":"Lin","sequence":"additional","affiliation":[{"name":"Internal Medicine, University of Colorado School of Medicine , Aurora, Colorado, USA"}]}],"member":"286","published-online":{"date-parts":[[2023,5,2]]},"reference":[{"issue":"85","key":"2023062008364083700_ocad074-B1","first-page":"25642","article-title":"21st Century Cures Act: interoperability, information blocking, and the ONC Health IT Certification Program","volume":"85","author":"Office of the National Coordinator for Health Information Technology, US Department of Health and Human Services","year":"2020","journal-title":"Fed Regist"},{"issue":"7","key":"2023062008364083700_ocad074-B2","doi-asserted-by":"crossref","first-page":"461","DOI":"10.7326\/0003-4819-157-7-201210020-00002","article-title":"Inviting patients to read their doctors\u2019 notes: a quasi-experimental study and a look ahead","volume":"157","author":"Delbanco","year":"2012","journal-title":"Ann Intern Med"},{"issue":"5","key":"2023062008364083700_ocad074-B3","doi-asserted-by":"crossref","first-page":"e13876","DOI":"10.2196\/13876","article-title":"OpenNotes after 7 years: patient experiences with ongoing access to their clinicians\u2019 outpatient visit notes","volume":"21","author":"Walker","year":"2019","journal-title":"J Med Internet Res"},{"key":"2023062008364083700_ocad074-B4","doi-asserted-by":"crossref","first-page":"n426","DOI":"10.1136\/bmj.n426","article-title":"US policy requires immediate release of records to patients","volume":"372","author":"Salmi","year":"2021","journal-title":"BMJ"},{"issue":"4","key":"2023062008364083700_ocad074-B5","doi-asserted-by":"crossref","first-page":"954","DOI":"10.1055\/s-0041-1736221","article-title":"Patient perceptions of receiving COVID-19 test results via an online portal: an open results survey","volume":"12","author":"Turer","year":"2021","journal-title":"Appl Clin Inform"},{"issue":"3","key":"2023062008364083700_ocad074-B6","doi-asserted-by":"crossref","first-page":"e233572","DOI":"10.1001\/jamanetworkopen.2023.3572","article-title":"Perspectives of patients about immediate access to test results through an online patient portal","volume":"6","author":"Steitz","year":"2023","journal-title":"JAMA Netw Open"},{"key":"2023062008364083700_ocad074-B7","author":"Institute for Patient and Family Centered Care."},{"issue":"1","key":"2023062008364083700_ocad074-B8","doi-asserted-by":"crossref","first-page":"91","DOI":"10.1097\/DBP.0b013e3181976a95","article-title":"Healthy steps: a systematic review of a preventive practice-based model of pediatric care","volume":"30","author":"Piotrowski","year":"2009","journal-title":"J Dev Behav Pediatr"}],"container-title":["Journal of the American Medical Informatics Association"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/jamia\/article-pdf\/30\/7\/1301\/50634323\/ocad074.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jamia\/article-pdf\/30\/7\/1301\/50634323\/ocad074.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,6,20]],"date-time":"2023-06-20T08:36:55Z","timestamp":1687250215000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jamia\/article\/30\/7\/1301\/7148302"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,5,2]]},"references-count":8,"journal-issue":{"issue":"7","published-online":{"date-parts":[[2023,5,2]]},"published-print":{"date-parts":[[2023,6,20]]}},"URL":"https:\/\/doi.org\/10.1093\/jamia\/ocad074","relation":{},"ISSN":["1067-5027","1527-974X"],"issn-type":[{"value":"1067-5027","type":"print"},{"value":"1527-974X","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2023,7,1]]},"published":{"date-parts":[[2023,5,2]]}}}