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Cancer Patients' Sharing of Electronic Health Records with Informal Caregivers
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: 0000-0002-0205-1165
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. 329, p. 1291-1295Article in journal (Refereed) Published
Abstract [en]

Patients' online record access (ORA) enables patients with complex diagnoses like cancer to involve their informal caregivers in care management by sharing health information, either through proxy access functionality or informally. The extent to which cancer patients use electronic health records (EHRs) for information sharing is unknown. Using the NORDeHEALTH 2022 Patient Survey, we compared cancer and other patients' reasons for using the EHR in Sweden. We found that although the majority of respondents did not access their records with the purpose of sharing with family or friends, cancer patients were more likely to state this as a reason than other patients, or those with no recent treatment experience. This indicates an increased need for proxy access functionality in patient portals among cancer patients.

Place, publisher, year, edition, pages
IOS Press, 2025. Vol. 329, p. 1291-1295
Keywords [en]
Cancer, Electronic Health Record, Information Sharing, Patient Portal, Patients’ Online Record Access, Proxy Access
National Category
Cancer and Oncology
Identifiers
URN: urn:nbn:se:uu:diva-564722DOI: 10.3233/SHTI251047ISI: 001753056600258PubMedID: 40776065Scopus ID: 2-s2.0-105013328536OAI: oai:DiVA.org:uu-564722DiVA, id: diva2:1988019
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NordForsk, 100477Available from: 2025-08-10 Created: 2025-08-10 Last updated: 2026-06-30Bibliographically approved

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Hägglund, MariaBlease, CharlotteHagström, JosefinKharko, Anna

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