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Adult Proxy Online Record Access - Differences Across Four Countries
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group.ORCID iD: 0000-0002-6839-3651
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group.ORCID iD: 0000-0003-4031-1965
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group.ORCID iD: 0000-0003-2835-0259
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2025 (English)In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 332, p. 216-220Article in journal (Refereed) Published
Abstract [en]

Patients' online record access (ORA) enables patients to involve their informal caregivers in care management by sharing health information, either through proxy access functionality or informally. The European Health Data Space mandates that member countries should ensure that patients can assign a proxy to have online access to their health data. In this study, we aimed to explore the current state of proxy ORA in four countries with mature ORA implementations; Sweden, Norway, Finland, and Estonia. We identified three types of proxy ORA; full proxy ORA, no proxy ORA, and controlled proxy ORA. Further guidance on ethically sound and secure proxy ORA functionality that complies with national and EU regulations and policies is warranted to ensure equal rights for citizens across Europe.

Place, publisher, year, edition, pages
IOS Press, 2025. Vol. 332, p. 216-220
Keywords [en]
Electronic Health Record, Information Sharing, Patient Portal, Patients’ Online Record Access, Proxy Access
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Information Systems, Social aspects
Identifiers
URN: urn:nbn:se:uu:diva-568495DOI: 10.3233/SHTI251530PubMedID: 41041777Scopus ID: 2-s2.0-105017651417OAI: oai:DiVA.org:uu-568495DiVA, id: diva2:2003758
Funder
NordForsk, 100477The Kamprad Family Foundation, 250282Available from: 2025-10-05 Created: 2025-10-05 Last updated: 2026-07-02Bibliographically approved

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Hägglund, MariaScott Duncan, ThereseHagström, JosefinKharko, AnnaBlease, Charlotte

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