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

• 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.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Health Care Service and Management, Health Policy and Services and Health Economy (hsv//eng)

NATURVETENSKAP  -- Data- och informationsvetenskap -- Systemvetenskap, informationssystem och informatik (hsv//swe)

NATURAL SCIENCES  -- Computer and Information Sciences -- Information Systems (hsv//eng)

Nyckelord

digital health

EHR

electronic health records

European Health Data Space

health care

open notes

patient access

patient portals

patients’ online record access

Europe

European Union

Humans

Scandinavian and Nordic Countries

article

benchmarking

electronic health record

European

health data

human

knowledge gap

medical record

telehealth

United States

Scandinavia

Information Systems

Informationssystem (IS)

Medical Informatics

Publikations- och innehållstyp

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