Health Data and Blockchain RDA 9th Plenary BoF meeting

Meeting title

Making use of Blockchain in dealing with Health Data

Short introduction describing the activities and the scope of the group: 

Public and private initiatives, both in Europe and in the US, are currently addressing the potential of applying the blockchain approach to health data. This is related to great general expectations (“what Internet did to transaction costs regarding information, blockchain can do regarding trust”) and to the assumption that what is needed for health data is a Distributed Empowerment system, providing secure access from anywhere on any device and having the Blockchain ledger as secure, non-editable record, where all transactions are confirmed by the network as entries forming blocks of transactions, and the whole network monitors the legitimacy of each transaction, guaranteeing distributed control.
The blockchain is expected to be based on portfolios of Smart Contracts, which are the executable pieces of code, stored on the blockchain for future execution. These bind people and transactions to specific actions and outcomes and require no further direct human involvement after the smart contract has been made a part of the distributed ledger (which is what makes these contracts "smart" or autonomous). 
Can this approach be informed and controlled by the principles of lawfulness, fairness, transparency, purpose and storage limitation, data minimization, accuracy, security, accountability, as requested for instance by most data protection regulations? Can it satisfy data subjects’ requests such as the right to modify, erase, be forgotten, donate data, withdraw consent, etc.?
The HD-IG is sponsoring the idea of establishing a WG focusing on Blockchain in health data with the aim of debating in depth the potential of such a system and whether the blockchain can ensure compliance with advanced data protection requirements (such as those defined, for instance, by the EU General Data Protection Regulation – GDPR), yet making it happen seamlessly and efficiently, at scale.
Due to its scope, this preliminary BoF meeting ideally fosters relations to a number of RDA WGs and IGs that may be able to contribute with their results to, or benefit from, the proposed future WG’s activities.

Additional links to informative material related to the group i.e. group page, Case statement, working documents etc

For further information see:

Meeting objectives

The objectives of the meeting are
• Presentation, discussion and finalization of the objectives of the case statement
• Identification of additional partners

Meeting agenda

1. Presentation of the idea behind this BoF (Yannis Ioannidis*, President and General Director of the ATHENA Research and Innovation Center; Edwin Morley-Fletcher, President of Lynkeus; David Manset*, CEO gnúbila and Head of R&I Almerys; Aggelos Kiayias*, chair in Cyber Security and Privacy at the University of Edinburgh and Associate Professor of Cryptography and Security at the Department of Informatics and Telecommunications, University of Athens) [40 minutes]
2. Specification of the objectives of the WG (discussion, all participants) [30 minutes]
3. Identification of other potential group members (all participants) [10 minutes]
4. Summary of the results, actions, and identification of contributions of the group members (Yannis Ioannidis, Edwin Morley-Fletcher) [10 minutes]

* speakers to be confirmed


For this session, we invite Healthcare Data Scientists dealing with data licensing and patient privacy issues, distributed system experts, privacy and security researchers from informatics and computer science, Policy-makers for Healthcare, Health bioinformatics legal experts, Healthcare and Health Maintenance Organisation administrators, and other interested professionals.

Group chair serving as contact person: Edwin Morley-Fletcher

Type of meeting: Informative meeting