logo Collaborating for Digital Health and Care in Europe

<   back

As discussed in EHTEL’s 2023 Symposium and at the Digital Health Nordic conference, by 2030, the aim is for 100% of European citizens to have access to their medical data online. This topic will come to the fore in 2024, as further progress is made towards the future launch of the European Health Data Space (EHDS). It is indeed expected that European Union legislators will recognise people’s right to electronically access, download, and share their health data.

It can be useful to look at the content of a full-blown survey, conducted in 2022-2023 and published in 2023. The report offers information about progress made so far, and how achievable full access will be by 2030.

What does the survey report on?

This ‘Study for Digital Decade e-Health Indicators Development’ was commissioned by DG CNECT of the European Commission (CNECT/LUX/2022/MVP/0027). The work was conducted on behalf of the European Commission by firms, empirica and PredictBy. The report is based on a large-scale survey. The 50+-page report publishes work carried out, during 2022-2023, to develop and execute a bespoke monitoring framework to measure citizens’ online access to electronic health records in the EU27 and a further two countries (Iceland and Norway).

The report results go beyond the legislative process and take a practical look at what has been implemented in the field. It concludes that, in 2022, the EU average score with respect to citizens’ access to their electronic health records was 72%. Denmark, Lithuania, Finland, Estonia, and Austria were ranked as the top 5 countries in terms of citizens’ access to their records.

 2024 Towards Citizen centric data sharing v4a

An accompanying, detailed set of annexes, of more than 120 pages, contains the status of each individual Member State as well as the further two countries.

e-health indicator monitoring will continue to occur until 2030. The results on the ‘State of the Digital Decade’ will be reported together with an enhanced Digital Economy and Society Index (DESI) as part of the European Semester.

European achievements to date include:

  • An indicator: The report provides a composite indicator. It defines several (12) sub-indicators that help monitor how European Member States are making progress towards the objective of all citizens having electronic access to their electronic health record data by the start of the next decade (2030). The level of granularity of the sub-indicators is interesting, relevant, and meaningful.
  • A baseline: The report establishes a baseline for achievement by all Member States. The average score for the European Union is currently 72%.
  • A realistic timeline: A further six years to achieve the total objective (of 100%) would appear to be a realistic prospect. Some Member States may have to take bigger steps forward than others to achieve complete citizen access (some 12 now achieve below the average).


What are any limitations and drawbacks to the survey report?

EHTEL welcomed the report and its indicator methodology, particularly considering the enforcement of natural persons rights in relation to the primary use of their personal electronic health data, as formulated in Article 3 of the European Health Data Space proposal. However, we have identified a few limitations, including ones established by the report itself.

There are potentially three drawbacks to the survey and the resulting report:

  • The survey misses the opportunity to distinguish between creating different forms of access i.e., to documents, to data and, indeed, to information.
    • For example, in some countries e.g., Belgium, patients may be able to gain wide access to documents, but the access to actual data is limited.
  • While the European Health Data Space plans to offer the right not only to access but also to sharing, the report did not touch on that subject.
  • Last, but not least: although it is understandable, it is a pity not to have available information through the survey and in the report on progress on citizen access to electronic health records in the United Kingdom.


What next with this report?

Chapter 3 of the report highlights key insights towards 100% citizens’ access to electronic health records in the Union. Overall, in this chapter, the report suggests that six specific issues require closer examination in the future (pp51-54):

  • Measuring access beyond Moving towards a multi-channel approach/experience.
  • Expanding and deepening the categories of accessible health data, in particular electronic results and report documents, to be followed by health records summary data. (The timeliness of data availability is also included in this suggestion.)
  • Ensuring harmonised and equally secure access to electronic health records across the European Union. EU-wide notification and eIDAS-compliant national eID schemes especially need further assessment.
  • Collecting and exchanging best practices and incentives that would particularly attract private sector providers to connect to electronic access services.
  • Ensuring equitable access to electronic health records in the EU. (The need to follow the Web Content Accessibility Guidelines, and the needs of disadvantaged groups, are highlighted.)
  • Lessons learned and capacity building.


How will EHTEL contribute towards the construction of the European Health Data Space in 2024?

EHTEL is inclined to concentrate on what is still to be done, and hence on the contents of the report’s third chapter.

Among EHTEL’s efforts, starting and continuing during 2024, will be:

  • A focus on patient access to their health data.
  • The EUID Wallet initiative aimed at certifying the data that citizens can download in their “wallet”, which will be explored in the POTENTIAL project.
  • Support of the “Blue Button” initiative in Catalunya, Spain.
  • Involvement in the xShare project – which will launch a similar activity at the level of the European Union called the “Yellow Button” initiative. The button is a practical implementation measure resulting from Article 3 in the proposal for the European Health Data Space.


The report is certainly connected with EHTEL’s advocacy-related work on citizen-centric data sharing.

Policymakers and practitioners (“doers”) will find it worthwhile to consider the report’s final words:

“This work constitutes a firm steppingstone towards regular gathering and analysis of the information and data which is fundamental for the further development of European as well as national policy and programmes on citizens’ access to electronic health records and their empowerment. The collected data and insights can deliver the input needed by further evidence-based policy making, and for developing and implementing measures to promote enabling and facilitating factors towards the Digital Decade target of 100% citizens’ access to their electronic health records in the EU.”

Join our Network

There has never been a more crucial time for health and social care stakeholders to engage with each other to shape and influence emerging models of healthcare...

Read more

Keep in Touch

Follow Us