A Nordic Perspective on Patient Online Record Access and the European Health Data Space.

Autor:	Hägglund M; 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., Kharko A; Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.; School of Psychology, Faculty of Health, University of Plymouth, Plymouth, United Kingdom., Bärkås A; Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden., Blease C; Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.; Division of General Medicine, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States., Cajander Å; Department of Information Technology, Uppsala University, Uppsala, Sweden., DesRoches C; Division of General Medicine, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States., Fagerlund AJ; Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway., Hagström J; Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden., Huvila I; Department of ALM, Uppsala University, Uppsala, Sweden., Hörhammer I; Department of Computer Science, Aalto University, Espoo, Finland., Kane B; Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.; Business School, Karlstad University, Karlstad, Sweden., Klein GO; Centre for Empirical Research on Information Systems, School of Business, Örebro University, Örebro, Sweden., Kristiansen E; Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway., Moll J; Centre for Empirical Research on Information Systems, School of Business, Örebro University, Örebro, Sweden., Muli I; Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden., Rexhepi H; School of Informatics, University of Skövde, Skövde, Sweden., Riggare S; Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden., Ross P; E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Tallinn, Estonia.; Research Department, East Tallinn Central Hospital, Tallinn, Estonia., Scandurra I; Centre for Empirical Research on Information Systems, School of Business, Örebro University, Örebro, Sweden., Simola S; Department of Computer Science, Aalto University, Espoo, Finland., Soone H; E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Tallinn, Estonia., Wang B; Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway., Ghorbanian Zolbin M; Department of Computer Science, Aalto University, Espoo, Finland., Åhlfeldt RM; School of Informatics, University of Skövde, Skövde, Sweden., Kujala S; Department of Computer Science, Aalto University, Espoo, Finland., Johansen MA; Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
Jazyk:	angličtina
Zdroj:	Journal of medical Internet research [J Med Internet Res] 2024 Jun 27; Vol. 26, pp. e49084. Date of Electronic Publication: 2024 Jun 27.
DOI:	10.2196/49084
Abstrakt:	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. (©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. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.06.2024.)
Databáze:	MEDLINE
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