NORDeHEALTH – Learning from the Nordic Experiences of Patient Online Record AccessDepartment of Information Technology, Uppsala University, Uppsala, Sweden.
Department of Medicine, Division of General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, USA.
Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden; Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden.
Department of Archives Libraries & Museums, Uppsala University, Uppsala, Sweden.
Department of Computer Science, Aalto University, Espoo, Finland.
Business School, Karlstad University, Karlstad, Sweden.
Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden; Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden.
School of Informatics, University of Skövde, Skövde, Sweden.
Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden; Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden.
E-Medicine Centre Department of Health Technologies, Tallinn University of Technology, Tallinn, EstoniaE.
Department of Computer Science, Aalto University, Espoo, Finland.
E-Medicine Centre Department of Health Technologies, Tallinn University of Technology, Tallinn, EstoniaE.
Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
Department of Computer Science, Aalto University, Espoo, Finland.
School of Informatics, University of Skövde, Skövde, Sweden.
Department of Computer Science, Aalto University, Espoo, Finland.
Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway; Department of Clinical Medicine Telemedicine and E-health Research Group, Arctic University of Norway, Tromsø, Norway.
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2023 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871
Article in journal (Other academic) Submitted
Abstract [en]
The Nordic countries are forerunners in online record access (ORA) which has now become widespread. The importance of accessible and structured health data has also been highlighted by policymakers internationally. To ensure the full realization of ORA’spotential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, technical, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, and introduce a Nordic-led research project that carries out the first of its kind, large-scale international investigation of patients’ ORA; NORDeHEALTH. We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records (EHRs). This will have implications within Europe and globally as it will further extend the boundaries for accessing and using EHRs for primary and secondary data use. Research such as that led by the NORDeHEALTH project is essential in guiding the design and implementation of solutions to meet the requirements of the EHDS proposal. Further international collaboration and research are needed to ensure that socio-technical and contextual factors are considered to ensure successful and secure implementation.
Place, publisher, year, edition, pages
JMIR Publications, 2023.
National Category
Information Systems Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:oru:diva-113082DOI: 10.2196/preprints.49084OAI: oai:DiVA.org:oru-113082DiVA, id: diva2:1850772
Note
This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
2024-04-112024-04-112024-04-12Bibliographically approved