Highlights from the report

Here’s a preview of some of our key findings across the six implementation dimensions: governance, capacity and skills, resources and funding, data quality, the relationship between primary and secondary data, and the creation of a data-driven culture in healthcare.

Resources and funding

  • Challenge: “The budget allocated to implementation by the European Commission was seen to be significantly misaligned with the ambition level of the proposed regulation.”
  • The report suggests EU policy makers should: “Provide adequate EU funding and better coordination of funding allocation for projects through which healthcare providers can invest in infrastructure for the EHDS and an integrated European implementation.”


  • Challenge: “Although political will to implement the EHDS was reported from most member states, lack of a culture of data-sharing among health system actors as well low awareness and control of health data among citizens could in many parts of Europe hinder the collective effort necessary to realise it in practice.”
  • The report suggests EU policy makers should: “Ensure meaningful patient and civil society input and representation at the EU -level data governance bodies, i.e. the EHDS Board” and “Support collaborative initiatives between member states for sharing best practices and lessons learnt for designing governance frameworks.”

Capacity and skills

  • Challenge: “In healthcare especially, many data holders have little technical or human capacity to assume data curation, management, extraction and transfer responsibilities.”
  • The report suggests health institutions should: “Build the right capacity for data gathering in healthcare workflows, automating primary data collection and improvement processes as much as possible with technology solutions.” and “Upskill current staff and develop career pathways promoting skill acquisition and development for data management and data science.”

Quality of data

  • Challenge: “In all countries surveyed, ensuring the quality of the data to be integrated in particular from electronic health records and other healthcare sources was expected to be associated with great complexity, effort and recurring cost.”
  • The report suggests healthcare providers should: “‘Contribute to developing standard approaches to improving primary data quality that are compatible with routine work processes.”

The relationship between primary and secondary data

  • Challenge: “The development and introduction of data-driven culture and innovation in clinical practice were found to face significant barriers and public fears.”
  • The report suggests health data access bodies should: “Facilitate data traceability to foster trust in the new outputs and technologies to be fed back into healthcare.”

Towards a data-driven culture in health

  • Challenge: “Many questions remain open for… European patients and citizens, who deserve clarity on the benefits they can expect from granting access to their data and answers about the safeguards that will be in place for its secondary use.”
  • The report suggests patient associations should: “Mobilise patients as advocates for data-sharing towards the general public.”

Download the full report now to explore more of our experts’ findings.