TY - JOUR
T1 - A Nordic Perspective on Patient Online Record Access and the European Health Data Space
AU - Hägglund, Maria
AU - Kharko, Anna
AU - Bärkås, Annika
AU - Blease, Charlotte
AU - Cajander, Åsa
AU - DesRoches, Catherine
AU - Fagerlund, Asbjørn Johansen
AU - Hagström, Josefin
AU - Huvila, Isto
AU - Hörhammer, Iiris
AU - Kane, Bridget
AU - Klein, Gunnar O.
AU - Kristiansen, Eli
AU - Moll, Jonas
AU - Muli, Irene
AU - Rexhepi, Hanife
AU - Riggare, Sara
AU - Ross, Peeter
AU - Scandurra, Isabella
AU - Simola, Saija
AU - Soone, Hedvig
AU - Wang, Bo
AU - Zolbin, Maedeh Ghorbanian
AU - Åhlfeldt, Rose Mharie
AU - Kujala, Sari
AU - Johansen, Monika Alise
N1 - Publisher Copyright:
©Maria Hägglund, Anna Kharko, Annika Bärkås, Charlotte Blease, Åsa 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 Åhlfeldt, Sari Kujala, Monika Alise Johansen.
PY - 2024/6/27
Y1 - 2024/6/27
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.
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.
KW - digital health
KW - EHR
KW - electronic health records
KW - European Health Data Space
KW - health care
KW - open notes
KW - patient access
KW - patient portals
KW - patients’ online record access
KW - Humans
KW - Europe
KW - Scandinavian and Nordic Countries
KW - European Union
KW - Electronic Health Records
UR - http://www.scopus.com/inward/record.url?scp=85197143113&partnerID=8YFLogxK
U2 - 10.2196/49084
DO - 10.2196/49084
M3 - Article
C2 - 38935430
AN - SCOPUS:85197143113
SN - 1439-4456
VL - 26
JO - Journal of Medical Internet Research
JF - Journal of Medical Internet Research
IS - 1
M1 - e49084
ER -