TY - JOUR
AU - Maria Hägglund
AU - Anna Kharko
AU - Annika Bärkås
AU - Charlotte Blease
AU - Åsa Cajander
AU - Catherine DesRoches
AU - Asbjørn Fagerlund
AU - Josefin Hagström
AU - Isto Huvila
AU - Iiris Hörhammer
AU - Bridget Kane
AU - Gunnar Klein
AU - Eli Kristiansen
AU - Jonas Moll
AU - Irene Muli
AU - Hanife Rexhepi
AU - Sara Riggare
AU - Peeter Ross
AU - Isabella Scandurra
AU - Saija Simola
AU - Hedvig Soone
AU - Bo Wang
AU - Maedeh Zolbin
AU - Rose-Mharie Åhlfeldt
AU - Sari Kujala
AU - Monika Johansen
AB - The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy  makers internationally. To ensure the full realization of ORA s potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, 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, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients  ORA—-NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.
BT - Journal of Medical Internet Research
DA - may
DO - 10.2196/49084
M1 - 1
N2 - The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy  makers internationally. To ensure the full realization of ORA s potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, 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, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients  ORA—-NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.
PY - 2023
EP - e49084
T2 - Journal of Medical Internet Research
TI - Is Patient Online Record Access Ready for the European Health Data Space : A Nordic Viewpoint
VL - 26
SN - 1438-8871
ER -