{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,17]],"date-time":"2026-06-17T11:58:17Z","timestamp":1781697497351,"version":"3.54.5"},"reference-count":47,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T00:00:00Z","timestamp":1788220800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T00:00:00Z","timestamp":1788220800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T00:00:00Z","timestamp":1779235200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["International Journal of Medical Informatics"],"published-print":{"date-parts":[[2026,9]]},"DOI":"10.1016\/j.ijmedinf.2026.106501","type":"journal-article","created":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T23:30:46Z","timestamp":1779319846000},"page":"106501","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":0,"special_numbering":"C","title":["From documentation to discovery: clinicians\u2019 perspectives on the generation, usability and standardization of real-world data"],"prefix":"10.1016","volume":"217","author":[{"ORCID":"https:\/\/orcid.org\/0009-0009-6678-4059","authenticated-orcid":false,"given":"Elisabeth","family":"Ross","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olivier","family":"Bouissou","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5520-0275","authenticated-orcid":false,"given":"\u00c5slaug","family":"Helland","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arild","family":"Faxvaag","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.ijmedinf.2026.106501_b0005","doi-asserted-by":"crossref","unstructured":"Demeure MJ, Von Hoff DD, Han H. The Role of Precision Medicine in the Diagnosis and Treatment of Patients with Rare Cancers. Cancer Treatment and Research. 178. Switzerland: Switzerland: Springer International Publishing AG; 2019. p. 81\u2013108.","DOI":"10.1007\/978-3-030-16391-4_3"},{"issue":"2","key":"10.1016\/j.ijmedinf.2026.106501_b0010","doi-asserted-by":"crossref","first-page":"334","DOI":"10.1038\/s41591-023-02715-8","article-title":"A federated learning system for precision oncology in Europe: DigiONE","volume":"30","author":"Mahon","year":"2024","journal-title":"Nat. Med."},{"issue":"4\u20135","key":"10.1016\/j.ijmedinf.2026.106501_b0015","doi-asserted-by":"crossref","first-page":"314","DOI":"10.1053\/j.seminoncol.2019.09.002","article-title":"The Veterans Precision Oncology Data Commons: Transforming VA data into a national resource for research in precision oncology","volume":"46","author":"Do","year":"2019","journal-title":"Semin. Oncol."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0020","article-title":"Clarifying the concept of a learning health system for healthcare delivery organizations: Implications from a qualitative analysis of the scientific literature","volume":"6(2):e10287\u2013n\/a","author":"Easterling","year":"2022","journal-title":"Learn. Health. Syst."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0025","article-title":"What is unique about learning health systems?","volume":"6(3):e10328\u2013n\/a","author":"Friedman","year":"2022","journal-title":"Learn. Health. Syst."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0030","article-title":"Data to knowledge to improvement: creating the learning health system","volume":"384","author":"McDonald","year":"2024","journal-title":"BMJ"},{"key":"10.1016\/j.ijmedinf.2026.106501_b0035","unstructured":"U.S. Food and Drug Administration. Real-World Evidence U.S. Food and Drug Administration2025 [Available from: https:\/\/www.fda.gov\/science-research\/science-and-research-special-topics\/real-world-evidence."},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0040","doi-asserted-by":"crossref","first-page":"102","DOI":"10.1186\/s12916-020-01563-4","article-title":"The three numbers you need to know about healthcare: the 60-30-10 Challenge","volume":"18","author":"Braithwaite","year":"2020","journal-title":"BMC Med."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0045","article-title":"A framework for understanding, designing, developing and evaluating learning health systems","volume":"7(1):e10315\u2013n\/a","author":"Foley","year":"2023","journal-title":"Learn. Health. Syst."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0050","article-title":"A systematic review of barriers to data sharing in public health","volume":"14(1):1144\u2013","author":"Van Panhuis","year":"2014","journal-title":"BMC Public Health"},{"key":"10.1016\/j.ijmedinf.2026.106501_b0055","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1016\/j.ijmedinf.2016.05.008","article-title":"Implementing Partnership-driven Clinical Federated Electronic Health Record Data Sharing Networks","volume":"93","author":"Stephens","year":"2016","journal-title":"Int. J. Med. Inform."},{"issue":"2","key":"10.1016\/j.ijmedinf.2026.106501_b0060","doi-asserted-by":"crossref","first-page":"255","DOI":"10.1007\/s12553-022-00639-w","article-title":"Semantic interoperability in health records standards: a systematic literature review","volume":"12","author":"de Mello","year":"2022","journal-title":"Health Technol (berl)."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0065","first-page":"574","article-title":"Observational Health Data Sciences and Informatics (OHDSI): Opportunities for Observational Researchers","volume":"216","author":"Hripcsak","year":"2015","journal-title":"Stud. Health Technol. Inform."},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0070","doi-asserted-by":"crossref","first-page":"758","DOI":"10.1038\/s41746-025-02126-8","article-title":"Crossing borders securely: synthetic data and federated networks for privacy-preserving access to real-world data and emerging use cases","volume":"8","author":"Wang","year":"2025","journal-title":"npj Digital Med."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0075","doi-asserted-by":"crossref","first-page":"435","DOI":"10.3389\/fphar.2018.00435","article-title":"A semantic transformation methodology for the secondary use of observational healthcare data in postmarketing safety studies","volume":"9","author":"Pacaci","year":"2018","journal-title":"Front. Pharmacol."},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0080","doi-asserted-by":"crossref","first-page":"054","DOI":"10.1055\/s-0037-1617452","article-title":"Towards Implementation of OMOP in a German University Hospital Consortium","volume":"9","author":"Maier","year":"2018","journal-title":"Appl Clin Inform."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0085","unstructured":"OHDSI. The Book of OHDSI: Observational Health Data Sciences and Informatics. ed.: OHDSI; 2021."},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0090","doi-asserted-by":"crossref","first-page":"189","DOI":"10.1038\/s41746-025-01581-7","article-title":"A scoping review of OMOP CDM adoption for cancer research using real world data","volume":"8","author":"Wang","year":"2025","journal-title":"NPJ Digit Med."},{"issue":"4","key":"10.1016\/j.ijmedinf.2026.106501_b0095","doi-asserted-by":"crossref","first-page":"915","DOI":"10.1002\/cpt.1785","article-title":"Can we Rely on results from IQVIA Medical Research Data UK Converted to the Observational Medical Outcome Partnership Common Data Model?: a Validation Study based on Prescribing Codeine in Children","volume":"107","author":"Candore","year":"2020","journal-title":"Clin. Pharmacol. Ther."},{"issue":"10","key":"10.1016\/j.ijmedinf.2026.106501_b0100","doi-asserted-by":"crossref","first-page":"2251","DOI":"10.1093\/jamia\/ocab132","article-title":"Increasing trust in real-world evidence through evaluation of observational data quality","volume":"28","author":"Blacketer","year":"2021","journal-title":"Journal of the American Medical Informatics Association : JAMIA."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0105","article-title":"Establishing standards: harmonising coding principles for a minimal cancer dataset in the OMOP Common Data Model. ESMO Real World Data and Digital","volume":"9","author":"Ajmal","year":"2025","journal-title":"Oncology"},{"key":"10.1016\/j.ijmedinf.2026.106501_b0110","unstructured":"Tjora AH. Kvalitative forskningsmetoder i praksis [Qualitative Research Methods in Practice]. 3rd ed. Oslo: Gyldendal akademisk; 2017. [In Norwegian]."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0115","unstructured":"Tjora A. Viten skapt. Kvalitativ analyse og teoriutvikling [Knowledge Created: Qualitative Analysis and Theory Development]. 1st ed.: Cappelen Damm Akademisk; 2018. [In Norwegian]."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0120","doi-asserted-by":"crossref","unstructured":"Malterud K. Kvalitative metoder i medisinsk forskning [Qualitative methods in medical research]. 2nd ed.: Universitetsforlaget; 2003. [In Norwegian].","DOI":"10.1177\/010740830302300212"},{"key":"10.1016\/j.ijmedinf.2026.106501_b0125","unstructured":"Kvale S, Brinkmann S. Det kvalitative forskningsintervju [The Qualitative Research Interview]. 3rd ed.: Gyldendal Akademisk; 2015. [In Norwegian]."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0130","article-title":"\u00c5 skape data fra kvalitativt forskningsintervju [Creating Data from Qualitative Research interviews]","author":"Drageset","year":"201054332","journal-title":"Sykepleien"},{"key":"10.1016\/j.ijmedinf.2026.106501_b0135","unstructured":"Grossmann C, Alper J. Observational Studies in a Learning Health System: Workshop Summary. National Academy of Sciences; 2013."},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0140","doi-asserted-by":"crossref","first-page":"287","DOI":"10.1186\/s12874-022-01768-6","article-title":"Real-world data: a brief review of the methods, applications, challenges and opportunities","volume":"22","author":"Liu","year":"2022","journal-title":"BMC Med. Res. Methodol."},{"issue":"3","key":"10.1016\/j.ijmedinf.2026.106501_b0145","doi-asserted-by":"crossref","first-page":"82","DOI":"10.18773\/austprescr.2018.017","article-title":"Observational studies and their utility for practice","volume":"41","author":"Gilmartin-Thomas","year":"2018","journal-title":"Aust. Prescr."},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0150","doi-asserted-by":"crossref","first-page":"150","DOI":"10.1002\/cpt.2272","article-title":"Understanding use of Real\u2010World Data and Real\u2010World evidence to support Regulatory Decisions on Medical Product Effectiveness","volume":"111","author":"Mahendraratnam","year":"2022","journal-title":"Clin. Pharmacol. Ther."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0155","article-title":"Developing learning health systems in the UK","author":"Hardie","year":"2022","journal-title":"Priorities for Action."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0160","doi-asserted-by":"crossref","unstructured":"Bjerkan J, Valderaune V, Olsen RM. Patient Safety Through Nursing Documentation: Barriers Identified by Healthcare Professionals and Students. Frontiers in computer science. 2021;3.","DOI":"10.3389\/fcomp.2021.624555"},{"key":"10.1016\/j.ijmedinf.2026.106501_b0165","unstructured":"Act of 2 July 1999 No. 64 relating to Health Personnel etc., (1999)."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0170","article-title":"Electronic Health Records and Quality of Care: an Observational Study Modeling Impact on Mortality, Readmissions, and Complications","volume":"95(19):e3332\u2013e","author":"Yanamadala","year":"2016","journal-title":"Medicine (Baltimore)"},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0175","doi-asserted-by":"crossref","first-page":"54","DOI":"10.1136\/amiajnl-2011-000376","article-title":"Validation of a common data model for active safety surveillance research","volume":"19","author":"Overhage","year":"2012","journal-title":"J. Am. Med. Inform. Assoc."},{"issue":"2","key":"10.1016\/j.ijmedinf.2026.106501_b0180","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1007\/s40264-012-0009-3","article-title":"An Evaluation of the THIN Database in the OMOP Common Data Model for active Drug Safety Surveillance","volume":"36","author":"Zhou","year":"2013","journal-title":"Drug Saf."},{"issue":"11","key":"10.1016\/j.ijmedinf.2026.106501_b0185","doi-asserted-by":"crossref","first-page":"945","DOI":"10.1007\/s40264-014-0214-3","article-title":"Fidelity Assessment of a Clinical Practice Research Datalink Conversion to the OMOP Common Data Model","volume":"37","author":"Matcho","year":"2014","journal-title":"Drug Saf."},{"issue":"10","key":"10.1016\/j.ijmedinf.2026.106501_b0190","doi-asserted-by":"crossref","first-page":"314","DOI":"10.1007\/s10916-019-1436-9","article-title":"Feasibility of Mapping Austrian Health Claims Data to the OMOP Common Data Model","volume":"43","author":"Haberson","year":"2019","journal-title":"J. Med. Syst."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0195","article-title":"Transforming Estonian health data to the Observational Medical Outcomes Partnership (OMOP) Common Data Model: lessons learned","volume":"6(4):ooad100\u2013ooad","author":"Oja","year":"2023","journal-title":"JAMIA Open."},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0200","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1136\/amiajnl-2014-002977","article-title":"Toward a science of learning systems: a research agenda for the high-functioning Learning Health System","volume":"22","author":"Friedman","year":"2015","journal-title":"Journal of the American Medical Informatics Association : JAMIA."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0205","doi-asserted-by":"crossref","unstructured":"Rauch J, H\u00fcbner UH, Morawski TS, H\u00fcbner UH, Mustata Wilson G, Ball MJ. Learning Health Systems: Concepts, Principles and Practice for Data-Driven Health. Health Informatics. Cham: Cham: Springer International Publishing; 2022. p. 133\u201354.","DOI":"10.1007\/978-3-030-91237-6_12"},{"issue":"1","key":"10.1016\/j.ijmedinf.2026.106501_b0210","doi-asserted-by":"crossref","first-page":"144","DOI":"10.1136\/amiajnl-2011-000681","article-title":"Methods and dimensions of electronic health record data quality assessment: enabling reuse for clinical research","volume":"20","author":"Weiskopf","year":"2013","journal-title":"Journal of the American Medical Informatics Association : JAMIA."},{"issue":"2","key":"10.1016\/j.ijmedinf.2026.106501_b0215","doi-asserted-by":"crossref","first-page":"181","DOI":"10.1136\/jamia.2010.007237","article-title":"Data from clinical notes: a perspective on the tension between structure and flexible documentation","volume":"18","author":"Rosenbloom","year":"2011","journal-title":"Journal of the American Medical Informatics Association : JAMIA."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0220","unstructured":"National Academy of Medicine. Learning Health System Core Commitments. A Trust Framework for the Common Good. National Academy of Medicine [cited 2025 25. mai]. Available from: https:\/\/nam.edu\/programs\/value-science-driven-health-care\/lhs-core-principles\/."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0225","doi-asserted-by":"crossref","DOI":"10.1016\/j.ijmedinf.2024.105652","article-title":"A systematic review and proposed framework for sustainable learning healthcare systems","volume":"192","author":"Golburean","year":"2024","journal-title":"Int. J. Med. Inform."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0230","unstructured":"European Health Data Space: Council and Parliament strike deal [press release]. https:\/\/www.consilium.europa.eu\/press: Council of the European Union, 15 March 2024."},{"key":"10.1016\/j.ijmedinf.2026.106501_b0235","doi-asserted-by":"crossref","first-page":"160","DOI":"10.12688\/openreseurope.18179.1","article-title":"Getting ready for the European Health Data Space (EHDS): IDERHA's plan to align with the latest EHDS requirements for the secondary use of health data","volume":"4","author":"Hussein","year":"2024","journal-title":"Open Res Eur."}],"container-title":["International Journal of Medical Informatics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1386505626002418?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1386505626002418?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,6,17]],"date-time":"2026-06-17T11:35:11Z","timestamp":1781696111000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1386505626002418"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9]]},"references-count":47,"alternative-id":["S1386505626002418"],"URL":"https:\/\/doi.org\/10.1016\/j.ijmedinf.2026.106501","relation":{},"ISSN":["1386-5056"],"issn-type":[{"value":"1386-5056","type":"print"}],"subject":[],"published":{"date-parts":[[2026,9]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"From documentation to discovery: clinicians\u2019 perspectives on the generation, usability and standardization of real-world data","name":"articletitle","label":"Article Title"},{"value":"International Journal of Medical Informatics","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.ijmedinf.2026.106501","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2026 The Author(s). Published by Elsevier B.V.","name":"copyright","label":"Copyright"}],"article-number":"106501"}}