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

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 SimolaHedvig Soone, Bo Wang, Maedeh Ghorbanian Zolbin, Rose Mharie Åhlfeldt, Sari Kujala, Monika Alise Johansen

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Article numbere49084
JournalJournal of Medical Internet Research
Volume26
Issue number1
DOIs
Publication statusPublished - 27 Jun 2024

ASJC Scopus subject areas

  • Health Informatics

Keywords

  • digital health
  • EHR
  • electronic health records
  • European Health Data Space
  • health care
  • open notes
  • patient access
  • patient portals
  • patients’ online record access
  • Humans
  • Europe
  • Scandinavian and Nordic Countries
  • European Union
  • Electronic Health Records

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