Consent Management System on Patient-Generated Health Data

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

doi:10.3233/SHTI230956

Consent Management System on Patient-Generated Health Data

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

Publikation: Bidrag til bog/antologi/rapport/konference proceeding › Konferenceartikel i proceeding › Forskning › peer 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.

Originalsprog	Engelsk
Titel	MEDINFO 2023 — The Future Is Accessible
Antal sider	5
Vol/bind	310
Forlag	IOS Press
Publikationsdato	25 jan. 2024
Sider	204-208
ISBN (Trykt)	978-1-64368-456-7
ISBN (Elektronisk)	978-1-64368-457-4
DOI	https://doi.org/10.3233/SHTI230956
Status	Udgivet - 25 jan. 2024
Begivenhed	19th World Congress on Medical and Health Informatics (MedInfo) 2023 - Sydney, Australien Varighed: 8 jul. 2023 → 12 jul. 2023 Konferencens nummer: 19 https://medinfo2023.org/

Konference

Konference	19th World Congress on Medical and Health Informatics (MedInfo) 2023
Nummer	19
Land/Område	Australien
By	Sydney
Periode	08/07/2023 → 12/07/2023
Internetadresse	https://medinfo2023.org/

Navn	Studies in Health Technology and Informatics
Vol/bind	310
ISSN	0926-9630

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10.3233/SHTI230956Licens: CC BY-NC 4.0

Open Access articleForlagets udgivne version, 472 KBLicens: CC BY-NC 4.0

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Citationsformater

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title = "Consent Management System on Patient-Generated Health Data",

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.",

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

author = "Pietro Randine and Eliot Salant and Miroslav Muzny and Louise Pape-Haugaard",

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pages = "204--208",

booktitle = "MEDINFO 2023 — The Future Is Accessible",

address = "Netherlands",

note = "19th World Congress on Medical and Health Informatics (MedInfo) 2023, MedInfo ; Conference date: 08-07-2023 Through 12-07-2023",

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Randine, P, Salant, E, Muzny, M & Pape-Haugaard, L 2024, Consent Management System on Patient-Generated Health Data. i MEDINFO 2023 — The Future Is Accessible. bind 310, IOS Press, Studies in Health Technology and Informatics , bind 310, s. 204-208, 19th World Congress on Medical and Health Informatics (MedInfo) 2023, Sydney, Australien, 08/07/2023. https://doi.org/10.3233/SHTI230956

Consent Management System on Patient-Generated Health Data. / Randine, Pietro; Salant, Eliot; Muzny, Miroslav et al.
MEDINFO 2023 — The Future Is Accessible. Bind 310 IOS Press, 2024. s. 204-208 (Studies in Health Technology and Informatics , Bind 310).

Publikation: Bidrag til bog/antologi/rapport/konference proceeding › Konferenceartikel i proceeding › Forskning › peer review

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Consent Management System on Patient-Generated Health Data

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