At the Longevity Summit Dublin 2024, Didier Coeurnelle delivered a keynote on the importance of sharing health data to accelerate longevity research. He discussed challenges around health data ownership, privacy concerns, and the bureaucratic delays facing data-sharing initiatives like the European Health Data Space. Coeurnelle stressed the potential of AI in managing health data and argued for a public, non-profit approach to data sharing. He also raised awareness about the extensive health data controlled by private companies, which he believes should be made available to scientists for public benefit​.

Key Points:

• Health Data and Longevity Research: Didier Coeurnelle emphasized the critical role of health data sharing for advancing longevity research, stating that big data, AI, and clinical trials could accelerate the discovery of anti-ageing treatments.

• Challenges with Health Data Ownership: He discussed how individuals are not the sole owners of their health data, which is often shared with private companies and public institutions, creating barriers to making it freely available for longevity research.

• Privacy Concerns vs. Scientific Progress: Coeurnelle addressed privacy issues, suggesting that while health data is sensitive, it is less so compared to other aspects of personal life. He argued for a balance between privacy and scientific benefits, emphasizing the greater good of sharing data for public health research.

• European Health Data Space Initiative: He highlighted the European Union's upcoming European Health Data Space legislation, which aims to interconnect databases across Europe for non-commercial research purposes. However, Coeurnelle warned that bureaucracy could delay its implementation until 2030.

• Artificial Intelligence and Data Curation: Coeurnelle stressed that AI could help curate and analyse shared health data efficiently, and that fears surrounding AI’s privacy risks are often misplaced, as AI can operate without human intervention.

• For-Profit vs. Non-Profit Data Sharing: He advocated for not-for-profit data sharing systems, which would reduce incentives for data theft and improve public trust. He argued that sharing data for the common good, rather than for commercial gain, could speed up scientific progress.