The European Health Data Space and Cancer: Applying Lessons Learnt for Successful Implementation

07 September 2022

The European Cancer Organisation (ECO) has published an action report today: The European Health Data Space and Cancer: Applying Lessons Learnt for Successful Implementation. The report provides a detailed account of the presentations and contributions shared during the June 2022 ECO Community 365 Roundtable Meeting on the European Health Data Space and Cancer.

This meeting brought together leading policy-makers, politicians, oncology experts, and patient advocates to discuss EU policy developments related to the ongoing digital transformation of cancer care, with a special focus on the opportunities and challenges associated to the creation of a European Health Data Space (EHDS), and its potential impact for the improvement of cancer care across Europe.

The roundtable aimed to:

  • Increase awareness on what data can do for cancer, and what the European Health Data Space means for the oncology community
  • Identify lessons learnt from pre-existing EU-wide projects on data sharing
  • Explore European Health Data Space implementation challenges, including those related to GDPR and data interoperability
  • Provide political understanding and suggest next steps for the EHDS.

This roundtable was organised by ECO in collaboration with the Digital Health Network, one of the ten ECO Focused Topic Networks, and the Community 365 group of charity, philanthropy, and industry contributors to the Focused Topic Networks.

Main outcomes from the roundtable include:

  1. Data silos: Data silos should be torn down to improve cancer care, for example, by developing data translators, and taking a citizen-focused data sharing culture.

  2. Trust: Data security, trust, respect for privacy, and transparency of the use and access of health data is key. Citizens and patients need to know how they can engage in the digital transformation of healthcare. There should be a harmonised, fit-for-purpose ethical approval process for secondary use across Europe.

  3. Applications for oncology: The implementation of the EHDS can have positive implications for strengthening research and innovation in cancer care, and should actively complement Europe’s Beating Cancer Plan and Cancer Mission.

  4. Multi-stakeholder collaboration: Multi-stakeholder collaboration is key to ensuring the success of the EHDS. Collaboration between different stakeholders, and co-design by end-users will be critical for the successful development and implementation of the EHDS.

  5. Applying lessons learnt: Lessons learnt from pilot projects in the secondary use of health data should be applied to maximise the success of the EHDS. Consideration should be given to deploying Federated Data Spaces using FAIR principles to overcome barriers to accessing health data. Similarly, experience with real-world data and real-world evidence initiatives point to the need to link data sets with a common data model / format, and thus and thus ensure they are interoperable.

  6. Implementation: Implementation guidelines should be drafted to support the roll-out and implementation of the EHDS at Member State level.

Commenting on the report, Wim Oyen, Digital Health Network Co-Chair, said: "Stakeholders across the cancer community expressed concerns about the fragmentation of health data and invested hope that the EHDS will help overcome such data silos. Health data integration is paramount to unlock the potential of the digital revolution in cancer care. The Community 365 Roundtable highlighted how the EHDS can foster health data connectivity and interoperability through data translator, interoperability targets and federated models."

"A multi-level and multi-stakeholders’ governance approach is vital to make the EHDS a success." said Carlo Catalano, Digital Health Network Co-Chair. "Collaboration between different stakeholders, including patients, healthcare professionals and regulatory authorities as well as co-design with end-users will be critical for the successful development and implementation of the EHDS. The Community 365 Roundtable emphasised the importance of a continuous dialogue when bringing the EHDS to life."

Read the full report here.