Project leader: Maria Hägglund, Uppsala University, Sweden
Project duration: 2021-2023
Participating countries: Sweden, Estonia, Finland, Norway and USA
Funding from NordForsk: 99,9469 EUR
Project website: nordehealth.eu
NORDeHEALTH aimed to identify the challenges and opportunities in digitalization of health services, particularly in the context of implementing national portals that give patients online access to their electronic health records (PAEHR). These systems are designed to support patient self-management, improve transparency, and enhance patient engagement in healthcare. With a focus on the Nordic region, which is commonly considered the blueprint for digital health innovation, the project sought to understand how national differences in policy, design, and user experiences reflect the effectiveness and implementation strategies of PAEHRs. By benchmarking existing solutions and comparing local implementations, the project contributed to the development of evidence-based recommendations for personal eHealth services (PeHS).
The overarching goal was to support public healthcare systems in their digital transformation by offering concrete feedback to national authorities and PeHS developers in the participating countries: Sweden, Norway, Finland, and Estonia. Guided by data, the project sought to provide guidelines for the design, implementation, and evaluation of PeHS.
Key Findings
The NORDeHEALTH project generated a number of impactful findings that
contributed to research, policy, and the Nordic added value:
- Patient portals are widely used and valued by patients across the Nordic countries.
In the largest international survey to date of nearly 30,000 national patient portal users, NORDeHEALTH gathered insights on patient and PAEHR characteristics that shape user experiences. The extensive dataset provided critical understanding of access barriers, implementation challenges and opportunities, enabling future refinement of the PAEHR services. The findings informed recommendations to national authorities and contributed to NordForsk’s Fast Track to Vision 2030 strategy for regional digital health. - Despite many national similarities, differences in national policies pointed to opportunities for improvements. Cross-country socio-technical analyses revealed major differences in how policies shape access to electronic health records, particularly for adolescents and proxy users.
- Nordic collaboration enabled shared learning and joint solutions. By combining expertise from four countries, NORDeHEALTH created a platform for comparative research, co-development, and coordinated dissemination.
Impact Story
National patient journals have been implemented in Sweden, Norway, Finland and Estonia a long time ago, but they all have significant differences in access to the patient records. By assessing the systems, the project helped providing knowledge and experience to other countries in Europe. As a proposal for a European Health Data Space has been launched in the EU, all countries in Europe will soon have to implement the same type of services and give patients online access to their medical records.
“That’s why we believe that our research results come at exactly the right time, and that there will be a general European requirement for everyone to have access to their medical records. But it’s important to identify the challenges, opportunities and impact linked to open patient portals from the Nordic countries,” says project leader Maria Hägglund.
Key outputs
Hägglund M, Kharko A, Hagström J, …, Johansen M. The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia. J Med Internet Res 2023;25:e47573. doi: 10.2196/47573
Moll J, Scandurra I, …, Klein GO. Sociotechnical Cross-Country Analysis of Contextual Factors That Impact Patients’ Access to Electronic Health Records in 4 European Countries: Framework Evaluation Study. J Med Internet Res 2024;26:e55752 doi: 10.2196/55752
Hagström J, Hägglund M, …, Hörhammer I. Minors’ and guardian access to and use of a national patient portal: A retrospective comparative case study of Sweden and Finland. Int J Med Inform. 2024 Apr 25;187:105465. doi: 10.1016/j.ijmedinf.2024.105465.
Fagerlund, A., Bärkås, A., Kharko, A., …, Johansen, M.A. Experiences from patients in mental healthcare accessing their electronic health records: results from a cross-national survey in Estonia, Finland, Norway, and Sweden. BMC Psychiatry 24, 481 (2024). https://doi.org/10.1186/s12888-024-05916-8
Bärkås A, Kharko A, …, Hägglund M. Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden. J Med Internet Res 2023;25:e47841. doi: 10.2196/47841
Simola S, Hörhammer I, …, Kujala S. Patients’ Experiences of a National Patient Portal and Its Usability: Cross-Sectional Survey Study. J Med Internet Res 2023;25:e45974 doi: 10.2196/45974. PMID: 37389909. PMCID: 10365631.
Hägglund M, Kharko A, …, Johansen M. A (2024). Nordic Perspective on Patient Online Record Access and the European Health Data Space. J Med Internet Res 2024;26:e49084, URL: https://www.jmir. org/2024/1/e49084, DOI: 10.2196/49084