Due to necessary scheduled maintenance, the JMIR Publications website will be unavailable from Wednesday, July 01, 2020 at 8:00 PM to 10:00 PM EST. We apologize in advance for any inconvenience this may cause you.
Who will be affected?
Readers: No access to all 28 journals. We recommend accessing our articles via PubMed Central
Authors: No access to the submission form or your user account.
Reviewers: No access to your user account. Please download manuscripts you are reviewing for offline reading before Wednesday, July 01, 2020 at 7:00 PM.
Editors: No access to your user account to assign reviewers or make decisions.
Copyeditors: No access to user account. Please download manuscripts you are copyediting before Wednesday, July 01, 2020 at 7:00 PM.
Hägglund M, Kharko A, BärkÃ¥s A, Blease C, Cajander Ã, DesRoches C, Fagerlund AJ, Hagström J, Huvila I, Hörhammer I, Kane B, Klein GO, Kristiansen E, Moll J, Muli I, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, Ghorbanian Zolbin M, Ã…hlfeldt RM, Kujala S, Johansen MA
A Nordic Perspective on Patient Online Record Access and the European Health Data Space
Warning: This is an author submission that is not peer-reviewed or edited.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.
NORDeHEALTH – Learning from the Nordic Experiences of Patient Online Record Access
Maria Hägglund;
Anna Kharko;
Annika Bärkås;
Charlotte Blease;
Ã…sa Cajander;
Catherine DesRoches;
Asbjørn Johansen Fagerlund;
Josefin Hagström;
Isto Huvila;
Iiris Hörhammer;
Bridget Kane;
Gunnar O Klein;
Eli Kristiansen;
Jonas Moll;
Irene Muli;
Hanife Rexhepi;
Sara Riggare;
Peeter Ross;
Isabella Scandurra;
Saija Simola;
Hedvig Soone;
Bo Wang;
Maedeh Ghorbanian Zolbin;
Rose-Mharie Ã…hlfeldt;
Sari Kujala;
Monika Alise Johansen
ABSTRACT
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.
Citation
Please cite as:
Hägglund M, Kharko A, BärkÃ¥s A, Blease C, Cajander Ã, DesRoches C, Fagerlund AJ, Hagström J, Huvila I, Hörhammer I, Kane B, Klein GO, Kristiansen E, Moll J, Muli I, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, Ghorbanian Zolbin M, Ã…hlfeldt RM, Kujala S, Johansen MA
A Nordic Perspective on Patient Online Record Access and the European Health Data Space