On 7 May, the European Commission (DG Sante and DG-RTD) and the CANDLE Project coordinated an event to explore potential mechanisms to integrate National Cancer Data Nodes (NCDNs) in the national implementation of the European Health Data Space regulation (EHDS).
We brought together over 150 participants from the eHealth Network and the Health Data Access Bodies Community of Practice to understand the mission and vision of the CANDLE project, the state of play of advanced NCDNs, hear the how an NCDN can help medical community advance, and discuss potential configuration mechanism into EHDS. Gerrit Meijer (Health-RI, CANDLE coordinator), Angelo Solimini (DG RTD)m and Irini Kessissoglou, PhD (DG SANTE) hosted the webinar, covering National Cancer Data Node conceptualisation through implementation in Member States. The webinar covered the missions and core functions of the NCDNs, showcasing the progress of both CANDLE and the EHDS implementation:
✔️ How NCDNs bridge the gap between EU initiatives on cancer and EHDS through 5 core functionalities
✔️Institution types that can become NCDNs
✔️ Options to anchor them within the national EHDS system
✔️Relevance to the eHealth Network and the Health Data Access Body Community of Practice
✔️Advantages of cancer as a frontrunner of all other disease-specific infrastructures
A presentation on the value of NCDNs from a medical professional’s perspective completed this conceptualisation. NCDNs help improve greatly the findability and accessibility of relevant data to support high-quality, practice-changing research supporting personalized cancer medicine at larger scale.
Different showcases from 6 countries illustrated NCDN implementation in Member States, covering embedment in national ecosystems and the importance of exchange within CANDLE.
In the subsequent discussions, participants showed particular interest in how the countries coordinate different stakeholder interests in NCDN creation, how they guarantee funding and deal with different data types. An ad-hoc poll identified capacity building as the most important challenge in the countries represented.
This webinar was a milestone for CANDLE’s mission to bring the cancer data and EHDS communities closer together and build an exchange space focussed on implementation.
We thank our speakers for helping us bringing the NCDN concept to life and linking it to the EHDS: Lia Martina, Ph.D. (DG SANTE), Cátia Sousa Pinto, MD (SPMS, EPE – Serviços Partilhados do Ministério da Saúde , Melanie Boerries , Lifang Liu (Health-RI), Tomi P. Mäkelä (Kansallinen syöpäkeskus – Finnish Cancer Center FICAN), Aedin Culhane (University of Limerick), Tobias Hartz (Klinisches Krebsregister Niedersachsen, Salvador Capella-Gutierrez (Barcelona Supercomputing Center), Kadi-Liis Veimann (Estonian Cancer Network ESTCAN).
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