User-Centric and Privacy-Preserving Cancer Research Platform – UPCARE

Cancer registries collect, store, and analyse information about tumor diseases to allow researchers to evaluate the effectiveness of therapies and discover environmental factors influencing certain cancer types. The data processing architecture of cancer registries in France and Germany was initially proposed in the nineties when neither the concept of privacy has been formalised at the level as it is today, nor did mobile apps and cloud services exist. Since then, legislation in Germany (KFRG as of 2013) and Europe (EU-GDPR as of 2018) has developed and data protection requirements are much clearer on the one hand, while the authority of cancer registries to analyse data has been extended. However, cancer registries in Germany and France face ongoing challenges in supporting detailed data analytics in an evolving market of mobile apps and cloud services, while protecting critical personal and health data. They are still organised as mostly isolated data silos and although they stick to common data schemes (e.g. the ADT/GEKID-Basic Record), it is still not possible to query more than a single registry at a time. As both countries face the same challenges in this area and complementing research expertise is available in France and Germany likewise, UPCARE aims at joining these forces to create a modern infrastructure for an overarching cancer registry query platform that complies with existing data schemas and protocol specifications, but leverages recent advances in the field of privacy-preserving computation and pairing-based cryptography. Specifically, UPCARE will:
- allow registry-spanning queries for legitimate cancer researchers
- keep users in the loop and let them provide informed consent to usage of their data. UPCARE will develop a novel Attribute-Based Encryption (ABE) scheme supporting purpose-bound access schemes.
- Provide private computing services for anonymised statistical analyses via a public API. To this end, UPCARE will combine homomorphic encryption solutions with differential privacy to achieve a quantifiable privacy level over encrypted data.
- Combine the above research advances in an architecture to make all data records inaccessible to the platform itself, so a breach of the overall query platform will not impact the privacy of any patient.
These features do not exist up to date but will become highly relevant as recent legislation in Germany fosters mobile apps and online services to process existing health data, provided that personal data is protected. By combining their closely related, yet not fully overlapping research topics, both French and German project partners will benefit from an exchange of ideas and people during the project in the form of project meetings and occasional research visits. Impact on future society: UPCARE aims to overcome the current isolation of cancer registry databases to enable researchers to conduct cross-national studies while preserving the autonomy of the individual cancer registries and protecting the patient’s privacy. It will be the first multi-national cancer research platform. At a political level, it will demonstrate that data minimisation is not the only way to achieve data protection, but that also smart cryptographic approaches can be used to achieve both, data protection and analytics.