The European Health Data Space is a high-stakes development with transformative potential. But its benefits for patients, Partners and innovators can only be realised if the healthcare ecosystem is empowered to implement it effectively.
To empower those leading the transformation, EIT Health’s Think Tank report, “Implementing the European Health Data Space across Europe” pinpoints specific challenges key actors may face in implementing the European Health Data Space and makes recommendations as to how these can be overcome. This must-read report reveals our ecosystem’s unique insights into how the vision for this vital legislation can be made a reality.
Transforming healthcare delivery and healthcare research
Improving health data sharing practices, while harnessing the power of insights from real world data, is a pressing health priority – the importance of which was underscored by the Covid-19 pandemic. The European Health Data Space (EHDS) is a new regulation making it easier to exchange and access health data at EU level.
The successful implementation of the EHDS has the potential to transform both healthcare delivery and healthcare research. It promises to improve patient care by making it easier and faster for patients to access and control their primary health data. It would also make it easier for secondary data to be used in research to drive healthcare innovation forwards.
Practical recommendations for the actors leading the transformation
Once the legislation is in effect, key actors including policy makers, health data access bodies, healthcare service providers, health institutions, higher education providers, patient organisations and digital medical devices industry will have a vital role to play in implementing the regulation – making its bold vision a reality.
The result of a series of roundtable discussions held across Europe which brought together experts from across our vast and diverse network, the report offers practical recommendations for the actors leading the transformation at local, national and EU levels to ensure a harmonised and inclusive European approach.
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Implementing the European Health Data Space Across Europe
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.”
Governance
- 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.
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