Paving the future of European healthcare with the European Health Data Space

In May 2022, the European Commission took a step by proposing the creation of the European Health Data Space (EHDS)—a transformative strategy to facilitate cross-border data access and exchange in healthcare. This ambitious initiative seeks to influence health data for primary healthcare delivery and secondary uses like research and policy-making. According to experts who participated in the recent “Healthcare Hackers” session, the success of the EHDS hinges on close collaboration among a diverse range of stakeholders—from healthcare providers to governments, tech companies, and research institutions.

Cross-country collaboration and best practices

France, a leading nation in developing EHDS, offers valuable insights. Through its Health Data Hub, France has made strides in facilitating the secondary use of health data, supporting over a hundred research projects since 2019. However, scaling this model across Europe poses significant hurdles. As Marianne Benderra from the French Health Data Hub highlighted, one of the primary challenges is managing the disparity between member states. Each country has its approach to data governance, citizen rights, and infrastructure. Best practices that have emerged in France, Finland, and Norway—countries with advanced data governance systems—offer a foundation for broader implementation. But as Benderra pointed out, translating these into actionable strategies across 27 diverse countries requires careful coordination and flexibility.

Building a cohesive EHDS also involves creating platforms for dialogue between stakeholders. Ensuring that each country’s health data policies align with the overarching European strategy will require an ongoing commitment to collaboration. Countries’ willingness to learn from each other’s successes and failures will ultimately dictate the success of this initiative.

The role of technology in scaling EHDS

Technology will be pivotal in realising the EHDS vision. The conversation is no longer limited to data sharing; it is now about integrating emerging technologies like AI to transform healthcare delivery. Antal Kuthy, CEO and Founder of E-Group ICT Software Technology Group, explained that the future lies in a “federated knowledge” model, where computation can be performed on local data without centralising it. This approach allows for aggregating insights from various data sets without the legal and ethical complications of sharing sensitive information across borders​.

This is a significant departure from the traditional model of data centralisation and offers a promising solution to one of the EHDS’s most significant obstacles: data sovereignty. Kuthy emphasised the importance of developing a European technology stack to support this federated model, ensuring that European healthcare data remains in European hands, even as it powers global research efforts.

Standardisation: The foundation of a Unified Health Data Space

Standardisation is the cornerstone of the EHDS, yet it remains one of its most complex aspects. As Marco Foracchia, CIO of Azienda USL di Reggio Emilia, IRCCS, shared, standardisation efforts at the regional level have been key to advancing digital healthcare in Italy. However, scaling these efforts to the national and European levels will require strong coordination between regions that differ significantly in their digital maturity.

Foracchia’s experience underscores the importance of establishing clear standards for data quality and utility. While Italy has made significant progress at the regional level, the country’s move toward national digital health records is still in its early stages. The lessons learned in Italy may offer valuable insights for other EU countries struggling with similar challenges in standardising their health data systems.

Training healthcare professionals, citizens, and patients

Education and training are equally critical to the EHDS’s success. As Sonia Dias, Dean at the National School of Public Health (ENSP NOVA) in Portugal, emphasised during the panel, the digital transformation of healthcare cannot happen without the proper training of healthcare professionals, citizens, and patients.

Dias pointed out that while data standardisation and technological infrastructure are vital, it is ultimately the people—whether they are doctors, nurses, or patients—who will determine the success of the EHDS. Healthcare professionals must be equipped with the skills to use digital tools effectively and understand the ethical implications of handling sensitive health data. Citizens and patients, on the other hand, must be made aware of their rights within this new data framework. Informed patients are better positioned to engage with their healthcare providers, make decisions about their care, and contribute to the broader health data ecosystem.

The future of EHDS: A long road ahead

As Europe begins this journey to restructure its healthcare system, the EHDS will undoubtedly face numerous obstacles. From fragmented legislation to technological infrastructure, the challenges are formidable. However, the rewards—improved healthcare delivery, accelerated research, and more informed policymaking—are well worth the effort.

Implementing the EHDS will be a marathon, not a sprint. It will require sustained effort from all stakeholders, including public institutions, private sector partners, and healthcare providers. But with continued collaboration, innovation, and a commitment to standardisation, the EHDS can redefine healthcare in Europe, making it more efficient, equitable, and data-driven.

The Role of EIT Health

The European Health Data Space is an ambitious yet essential step toward modernising healthcare across the EU. By fostering collaboration between countries, embracing technological advancements like AI, and ensuring data sovereignty, the EHDS has the potential to be a game-changer in healthcare delivery. However, achieving this vision will require careful coordination, robust infrastructure, and a commitment to overcoming the regulatory, technological, and ethical challenges that lie ahead.

EIT Health can play a crucial role in supporting the implementation of EHDS. Its pan-European network of partners from industry, academia, research, and healthcare providers positions it as a facilitator of collaboration. By bringing together stakeholders across different countries, EIT Health can ensure that the EHDS benefits from diverse perspectives and knowledge-sharing, promote seamless data exchange across borders, accelerate the development of new digital health tools, promote responsible AI use and foster a patient-centric approach, and build the infrastructure and skills needed for implementation.