{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,28]],"date-time":"2026-03-28T07:21:30Z","timestamp":1774682490443,"version":"3.50.1"},"reference-count":0,"publisher":"IOS Press","isbn-type":[{"value":"9781643684567","type":"print"},{"value":"9781643684574","type":"electronic"}],"license":[{"start":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T00:00:00Z","timestamp":1706140800000},"content-version":"unspecified","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":[[2024,1,25]]},"abstract":"<jats:p>We consent to many things in life, but sometimes we do not know what we consent to. When discussing data protection in Europe, consent has been associated with permission under the GDPR, and health data are highly sensitive. Patients cannot make an informed decision without being provided with the information they need upfront: no informed decision, no informed consent. This paper presents a consent management system for patient-generated health data stored with HL7 FHIR specification, tested on Type 1 diabetes synthetic data. This architecture, based on using FHIR as an unequivocal data exchange format, can lead to individuals (patients) taking control of their data, enabling potential data exchange and reuse of health data across countries and organisations, in line with the European Commission proposal of a European Health Data Space.<\/jats:p>","DOI":"10.3233\/shti230956","type":"book-chapter","created":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T10:18:16Z","timestamp":1706177896000},"source":"Crossref","is-referenced-by-count":1,"title":["Consent Management System on Patient-Generated Health Data"],"prefix":"10.3233","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7188-0138","authenticated-orcid":false,"given":"Pietro","family":"Randine","sequence":"first","affiliation":[{"name":"Department of Computer Science, University of Troms\u00f8 \u2013 The Arctic University of Norway, Troms\u00f8, Norway"},{"name":"Norwegian Centre for E-health Research, University Hospital of North Norway, Troms\u00f8, Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eliot","family":"Salant","sequence":"additional","affiliation":[{"name":"IBM Research, Haifa, Israel"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Miroslav","family":"Muzny","sequence":"additional","affiliation":[{"name":"Department of Computer Science, University of Troms\u00f8 \u2013 The Arctic University of Norway, Troms\u00f8, Norway"},{"name":"Norwegian Centre for E-health Research, University Hospital of North Norway, Troms\u00f8, Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1655-8792","authenticated-orcid":false,"given":"Louise","family":"Pape-Haugaard","sequence":"additional","affiliation":[{"name":"Department of Health Science and Technology, Aalborg University, Aalborg, Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","MEDINFO 2023 \u2014 The Future Is Accessible"],"original-title":[],"link":[{"URL":"https:\/\/ebooks.iospress.nl\/pdf\/doi\/10.3233\/SHTI230956","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T10:18:17Z","timestamp":1706177897000},"score":1,"resource":{"primary":{"URL":"https:\/\/ebooks.iospress.nl\/doi\/10.3233\/SHTI230956"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,1,25]]},"ISBN":["9781643684567","9781643684574"],"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/shti230956","relation":{},"ISSN":["0926-9630","1879-8365"],"issn-type":[{"value":"0926-9630","type":"print"},{"value":"1879-8365","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,1,25]]}}}