Consent Management System on Patient-Generated Health Data

Pietro Randine, Eliot Salant, Miroslav Muzny, Louise Pape-Haugaard

Research output: Contribution to book/anthology/report/conference proceedingArticle in proceedingResearchpeer-review

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Abstract

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.

Original languageEnglish
Title of host publicationMEDINFO 2023 — The Future Is Accessible
Number of pages5
Volume310
PublisherIOS Press
Publication date25 Jan 2024
Pages204-208
ISBN (Print)978-1-64368-456-7
ISBN (Electronic)978-1-64368-457-4
DOIs
Publication statusPublished - 25 Jan 2024
Event19th World Congress on Medical and Health Informatics (MedInfo) 2023 - Sydney, Australia
Duration: 8 Jul 202312 Jul 2023
Conference number: 19
https://medinfo2023.org/

Conference

Conference19th World Congress on Medical and Health Informatics (MedInfo) 2023
Number19
Country/TerritoryAustralia
CitySydney
Period08/07/202312/07/2023
Internet address
SeriesStudies in Health Technology and Informatics
Volume310
ISSN0926-9630

Keywords

  • Diabetes Mellitus, Type 1/therapy
  • Europe
  • Humans
  • Informed Consent
  • health information exchange
  • privacy
  • interoperability
  • Adoption and use of digital health standards

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