{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,24]],"date-time":"2026-03-24T11:28:23Z","timestamp":1774351703059,"version":"3.50.1"},"reference-count":24,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2024,1,30]],"date-time":"2024-01-30T00:00:00Z","timestamp":1706572800000},"content-version":"vor","delay-in-days":1,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"Office of the National Coordinator of Health Information Technology"},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"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":[[2024,4,3]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>The 21st Century Cures Act Final Rule requires that certified electronic health records (EHRs) be able to export a patient\u2019s full set of electronic health information (EHI). This requirement becomes more powerful if EHI exports use interoperable application programming interfaces (APIs). We sought to advance the ecosystem, instantiating policy desiderata in a working reference implementation based on a consensus design.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Materials and Methods<\/jats:title>\n                  <jats:p>We formulate a model for interoperable, patient-controlled, app-driven access to EHI exports in an open source reference implementation following the Argonaut FHIR Accelerator consensus implementation guide for EHI Export.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>The reference implementation, which asynchronously provides EHI across an API, has three central components: a web application for patients to request EHI exports, an EHI server to respond to requests, and an administrative export management web application to manage requests. It leverages mandated SMART on FHIR\/Bulk FHIR APIs.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Discussion<\/jats:title>\n                  <jats:p>A patient-controlled app enabling full EHI export from any EHR across an API could facilitate national-scale patient-directed information exchange. We hope releasing these tools sparks engagement from the health IT community to evolve the design, implement and test in real-world settings, and develop patient-facing apps.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>To advance regulatory innovation, we formulate a model that builds on existing requirements under the Cures Act Rule and takes a step toward an interoperable, scalable approach, simplifying patient access to their own health data; supporting the sharing of clinical data for both improved patient care and medical research; and encouraging the growth of an ecosystem of third-party applications.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/jamia\/ocae013","type":"journal-article","created":{"date-parts":[[2024,1,30]],"date-time":"2024-01-30T05:56:05Z","timestamp":1706594165000},"page":"901-909","source":"Crossref","is-referenced-by-count":6,"title":["Beyond compliance with the 21st Century Cures Act Rule: a patient controlled electronic health information export application programming interface"],"prefix":"10.1093","volume":"31","author":[{"given":"Dylan","family":"Phelan","sequence":"first","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital , Boston, MA 02215, United States"}]},{"given":"Daniel","family":"Gottlieb","sequence":"additional","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital , Boston, MA 02215, United States"},{"name":"Department of Biomedical Informatics, Harvard Medical School , Boston, MA 02115, United States"}]},{"given":"Joshua C","family":"Mandel","sequence":"additional","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital , Boston, MA 02215, United States"},{"name":"Department of Biomedical Informatics, Harvard Medical School , Boston, MA 02115, United States"}]},{"given":"Vladimir","family":"Ignatov","sequence":"additional","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital , Boston, MA 02215, United States"}]},{"given":"James","family":"Jones","sequence":"additional","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital , Boston, MA 02215, United States"}]},{"given":"Brett","family":"Marquard","sequence":"additional","affiliation":[{"name":"Waveone Associates , Amherst, MA 01002, United States"}]},{"given":"Alyssa","family":"Ellis","sequence":"additional","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital , Boston, MA 02215, United States"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9781-0477","authenticated-orcid":false,"given":"Kenneth D","family":"Mandl","sequence":"additional","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital , Boston, MA 02215, United States"},{"name":"Department of Biomedical Informatics, Harvard Medical School , Boston, MA 02115, United States"}]}],"member":"286","published-online":{"date-parts":[[2024,1,29]]},"reference":[{"key":"2024040320062900700_ocae013-B1","author":"21st Century Cures Act","year":"2016"},{"key":"2024040320062900700_ocae013-B2","author":"Information Blocking","year":"2023"},{"key":"2024040320062900700_ocae013-B3","author":"Health and Human Services Department","year":"2020"},{"issue":"5","key":"2024040320062900700_ocae013-B4","doi-asserted-by":"crossref","first-page":"899","DOI":"10.1093\/jamia\/ocv189","article-title":"SMART on FHIR: a standards-based, interoperable apps platform for electronic health records","volume":"23","author":"Mandel","year":"2016","journal-title":"J Am Med Inform Assoc"},{"issue":"1","key":"2024040320062900700_ocae013-B5","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1038\/s41746-020-00358-4","article-title":"Push button population health: the SMART\/HL7 FHIR bulk data access application programming interface","volume":"3","author":"Mandl","year":"2020","journal-title":"Npj Digital Medicine"},{"key":"2024040320062900700_ocae013-B6","author":"Office of the National Coordinator of Health Information Technology"},{"key":"2024040320062900700_ocae013-B7","author":"45 CFR 170.315(b)(10)(ii)(B)"},{"key":"2024040320062900700_ocae013-B8","author":"Epic Systems"},{"key":"2024040320062900700_ocae013-B9","author":"Athenahealth"},{"issue":"2","key":"2024040320062900700_ocae013-B10","first-page":"18","article-title":"Leaping the data chasm: structuring donation of clinical data for healthcare innovation and modeling","volume":"14","author":"Taylor","year":"2015","journal-title":"Harvard Health Policy Rev"},{"issue":"10","key":"2024040320062900700_ocae013-B11","doi-asserted-by":"crossref","first-page":"2298","DOI":"10.1093\/jamia\/ocab133","article-title":"Patient-led data sharing for clinical bioinformatics research: USCDI and beyond","volume":"28","author":"Gordon","year":"2021","journal-title":"J Am Med Inform Assoc"},{"key":"2024040320062900700_ocae013-B12","author":"SMART Health IT. SMART Health IT"},{"key":"2024040320062900700_ocae013-B13","author":"ImplementationGuide\u2014FHIR v6.0.0-cibuild"},{"key":"2024040320062900700_ocae013-B14"},{"issue":"4","key":"2024040320062900700_ocae013-B15","doi-asserted-by":"crossref","first-page":"597","DOI":"10.1136\/amiajnl-2011-000622","article-title":"The SMART platform: early experience enabling substitutable applications for electronic health records","volume":"19","author":"Mandl","year":"2012","journal-title":"J Am Med Inform Assoc"},{"key":"2024040320062900700_ocae013-B16","author":"Health Level Seven. Argonaut Project Home"},{"key":"2024040320062900700_ocae013-B17","author":"HealthITAnalytics"},{"key":"2024040320062900700_ocae013-B18","author":"EHRIntelligence"},{"key":"2024040320062900700_ocae013-B19","author":"Argonaut","year":"2022"},{"issue":"3","key":"2024040320062900700_ocae013-B20","doi-asserted-by":"crossref","first-page":"230","DOI":"10.1093\/jamia\/ocx079","article-title":"Synthea: an approach, method, and software mechanism for generating synthetic patients and the synthetic electronic health care record","volume":"25","author":"Walonoski","year":"2018","journal-title":"J Am Med Inform Assoc"},{"key":"2024040320062900700_ocae013-B21","author":"McKenzie","year":"2023"},{"key":"2024040320062900700_ocae013-B22","author":"McKenzie","year":"2023"},{"key":"2024040320062900700_ocae013-B23","author":"Health Information Privacy Division. Individuals\u2019 Right under HIPAA to Access their Health Information 45 CFR \u00a7 164.524","year":"2016"},{"issue":"7281","key":"2024040320062900700_ocae013-B24","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1136\/bmj.322.7281.283","article-title":"Public standards and patients\u2019 control: how to keep electronic medical records accessible but private","volume":"322","author":"Mandl","year":"2001","journal-title":"BMJ"}],"container-title":["Journal of the American Medical Informatics Association"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/jamia\/article-pdf\/31\/4\/901\/57148517\/ocae013.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jamia\/article-pdf\/31\/4\/901\/57148517\/ocae013.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,4,3]],"date-time":"2024-04-03T20:06:47Z","timestamp":1712174807000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jamia\/article\/31\/4\/901\/7591539"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,1,29]]},"references-count":24,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2024,1,29]]},"published-print":{"date-parts":[[2024,4,3]]}},"URL":"https:\/\/doi.org\/10.1093\/jamia\/ocae013","relation":{},"ISSN":["1067-5027","1527-974X"],"issn-type":[{"value":"1067-5027","type":"print"},{"value":"1527-974X","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2024,4,1]]},"published":{"date-parts":[[2024,1,29]]}}}