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Cancer Patients' Sharing of Electronic Health Records with Informal Caregivers
Department of Women's and Children's Health, Uppsala University, Sweden.
University of Skövde, School of Informatics. University of Skövde, Informatics Research Environment. (Information Systems)ORCID iD: 0000-0001-8957-9853
Department of Women's and Children's Health, Uppsala University, Sweden.
Department of Women's and Children's Health, Uppsala University, Sweden.
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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, Adult, Aged, Caregivers, Electronic Health Records, Female, Humans, Male, Middle Aged, Neoplasms, Patient Portals, Sweden, caregiver, epidemiology, human, medical record, neoplasm, therapy
National Category
Cancer and Oncology Health Care Service and Management, Health Policy and Services and Health Economy Nursing
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:his:diva-25763DOI: 10.3233/SHTI251047PubMedID: 40776065Scopus ID: 2-s2.0-105013328536OAI: oai:DiVA.org:his-25763DiVA, id: diva2:1992754
Conference
20th World Congress on Medical and Health Informatics, MedInfo, Taipei, August 9-13, 2025
Projects
NORDeHEALTH
Funder
NordForsk, 100477
Note

CC BY-NC 4.0

MEDINFO 2025 — Healthcare Smart × Medicine Deep

Proceedings of the 20th World Congress on Medical and Health Informatics

Editors: Mowafa S. Househ, Zain Ul Abideen Tariq, Mahmood Al-Zubaidi, Uzair Shah, Elaine Huesing

978-1-64368-608-0 (online)

Corresponding Author: Maria Hägglund, Uppsala University, Department of Women’s and Children’s Health, Uppsala University Hospital, 751 85 Uppsala, Sweden, maria.hagglund@uu.se

This work was supported by NordForsk via funding to NORDeHEALTH (No. 100477).

Available from: 2025-08-28 Created: 2025-08-28 Last updated: 2025-09-29Bibliographically approved

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