Adult Proxy Online Record Access - Differences Across Four Countries

Maria Hägglund; Therese Scott Duncan; Josefin Hagström; Sari Kujala; Anna Dudkina; Jonas Moll; Anna Kharko; Monika A. Johansen; Charlotte Blease

doi:10.3233/SHTI251530

Adult Proxy Online Record Access - Differences Across Four Countries

Maria Hägglund, Therese Scott Duncan, Josefin Hagström, Sari Kujala, Anna Dudkina, Jonas Moll, Anna Kharko, Monika A. Johansen, Charlotte Blease

Tutkimustuotos: Artikkeli kirjassa/konferenssijulkaisussa › Chapter › Scientific › vertaisarvioitu

2 Lataukset (Pure)

Abstrakti

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.

Alkuperäiskieli	Englanti
Otsikko	Good Evaluation - Better Digital Health
Alaotsikko	Proceedings of the EFMI Special Topic Conference 2025
Kustantaja	IOS Press
Sivut	216-220
Sivumäärä	5
ISBN (elektroninen)	978-1-64368-629-5
DOI - pysyväislinkit	https://doi.org/10.3233/SHTI251530
Tila	Julkaistu - 2 lokak. 2025
OKM-julkaisutyyppi	A3 Kirjan tai muun kokoomateoksen osa
Tapahtuma	Special Topic Conference of the European Federation for Medical Informatics - Osnabrück, Saksa Kesto: 20 lokak. 2025 → 22 lokak. 2025 Konferenssinumero: 24

Julkaisusarja

Nimi	Studies in Health Technology and Informatics
Kustantaja	IOS Press
Vuosikerta	332
ISSN (elektroninen)	0926-9630

Conference

Conference	Special Topic Conference of the European Federation for Medical Informatics
Lyhennettä	EFMI STC
Maa/Alue	Saksa
Kaupunki	Osnabrück
Ajanjakso	20/10/2025 → 22/10/2025

Rahoitus

This work was supported by NordForsk via funding to NORDeHEALTH (No. 100477), and The Kamprad Family Foundation for Entrepreneurship, Research & Charity via funding to the project FamORA (No. 20250282).

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10.3233/SHTI251530Lisenssi: CC BY-NC

Adult_Proxy_Online_Record_Access_–_Differences_Across_Four_CountriesFinal published version, 196 KBLisenssi: CC BY-NC

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Hägglund, M., Scott Duncan, T., Hagström, J., Kujala, S., Dudkina, A., Moll, J., Kharko, A., Johansen, M. A., & Blease, C. (2025). Adult Proxy Online Record Access - Differences Across Four Countries. teoksessa Good Evaluation - Better Digital Health: Proceedings of the EFMI Special Topic Conference 2025 (Sivut 216-220). (Studies in Health Technology and Informatics; Vuosikerta 332). IOS Press. https://doi.org/10.3233/SHTI251530

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abstract = "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.",

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author = "Maria H{\"a}gglund and \{Scott Duncan\}, Therese and Josefin Hagstr{\"o}m and Sari Kujala and Anna Dudkina and Jonas Moll and Anna Kharko and Johansen, \{Monika A.\} and Charlotte Blease",

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Hägglund, M, Scott Duncan, T, Hagström, J, Kujala, S, Dudkina, A, Moll, J, Kharko, A, Johansen, MA & Blease, C 2025, Adult Proxy Online Record Access - Differences Across Four Countries. julkaisussa Good Evaluation - Better Digital Health: Proceedings of the EFMI Special Topic Conference 2025. Studies in Health Technology and Informatics, Vuosikerta 332, IOS Press, Sivut 216-220, Special Topic Conference of the European Federation for Medical Informatics , Osnabrück, Saksa, 20/10/2025. https://doi.org/10.3233/SHTI251530

Adult Proxy Online Record Access - Differences Across Four Countries. / Hägglund, Maria; Scott Duncan, Therese; Hagström, Josefin et al.
Good Evaluation - Better Digital Health: Proceedings of the EFMI Special Topic Conference 2025. IOS Press, 2025. s. 216-220 (Studies in Health Technology and Informatics; Vuosikerta 332).

Tutkimustuotos: Artikkeli kirjassa/konferenssijulkaisussa › Chapter › Scientific › vertaisarvioitu

TY - CHAP

T1 - Adult Proxy Online Record Access - Differences Across Four Countries

AU - Hägglund, Maria

AU - Scott Duncan, Therese

AU - Hagström, Josefin

AU - Kujala, Sari

AU - Dudkina, Anna

AU - Moll, Jonas

AU - Kharko, Anna

AU - Johansen, Monika A.

AU - Blease, Charlotte

N1 - Conference code: 24

PY - 2025/10/2

Y1 - 2025/10/2

N2 - 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.

AB - 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.

KW - Electronic Health Record

KW - Information Sharing

KW - Patient Portal

KW - Patients’ Online Record Access

KW - Proxy Access

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AN - SCOPUS:105017651417

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BT - Good Evaluation - Better Digital Health

PB - IOS Press

T2 - Special Topic Conference of the European Federation for Medical Informatics

Y2 - 20 October 2025 through 22 October 2025

ER -

Adult Proxy Online Record Access - Differences Across Four Countries

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