Meeting title: State of the Art Report (Remote Access Instructions)
Meeting Location: Congress C
Collaborative session notes:
Short introduction describing the scope of the group and if any previous activities
After two successful BoFs held at P9 in Barcelona and at P10 in Montreal, the Health Data Interest Group (HDIG) has gained support within the RDA community for the idea of establishing a WG focusing on Blockchain in health data. While completing the review and endorsement process, the Plenary in Berlin was already the occasion for carrying on the debate on the WG objectives, with special regard to 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. The last P12 in Gaborone, Botswana, was the first official meeting of the newly established WG, and served as occasion to discuss on potential uses and challenges coming from crytpocurrencies such as “tokenomics” – which are based on blockchain technologies and represent a novel type of pioneering social business model, involving the usage of specific protocols for exchanging value between participants on a decentralized computer network – when applied to healthcare.
Now, at P13 in Philadelphia the first WG goal as described in the case statement will be properly addressed: the state of the art report (after 6 months) describing the current experiences in blockchain based on handling of health data.
Additional links to informative material related to the group:
Blockchain Applications in Health WG page: https://rd-alliance.org/groups/blockchain-applications-health-wg
Case statement: https://rd-alliance.org/group/blockchain-applications-health-wg/case-sta...
Presentation held at P12 on cryptocurrenices & tokenomics: https://www.rd-alliance.org/p12-session-blockchain-wgpresentation-tokeno...
The aim of this session is to present and discuss the first step of the Working Plan set by the WG, focused on the state of the art, describing the current experiences in blockchain based handling of health data.
There has been increasing attention, also from public decision makers, in regard to Blockchain potential in healthcare. Last but not the least, the Report of The Joint Economic Committee Congress of The United States on the 2018 Economic Report of the President, indicated blockchain as a potential solution for coordination and portability of medical records.
Thanks to this growing institutional interest, which is likely also to encourage more systematic investments in the area, many blockchain applications and pilots in the healthcare industry have been explored, spanning from health data exchange and identity management to drugs supply chain, from insurance to personalized medicine.
Given the specific features of blockchain in establishing trust, accountability, traceability, and integrity of data, one of the key applications envisioned (and nowadays explored by the industry) is the one of electronic health records management and exchange. Indeed, the blockchain introduces a decentralized mechanism for controlling and accessing data (potentially also implying that each involved healthcare organization manages its own data), while also introducing a time-stamp to the data, as well as robust audit trails mechanisms.
Interestingly, data management is a field that allows not only for optimisation/incremental innovation for reducing costs and improving efficiency in the data management and access process, but also opens up for new business models in the healthcare industry, with a central role played by patients as producer of “health and wealth”, while also opening up for a complete new set of data-driven services toward value based care.
The report will explore all these aspects, giving a first hint in order to:
• analyse and compare usages of the blockchain in healthcare, implementations of blockchain architectures, associated legal and socio-economic impacts and perspectives,
• assess both incremental and disruptive innovation and relevant innovative business models,
• understand the connection with other technologies toward the creation of new data-driven services and market,
• assess the potential of blockchain-based self-enacting smart contracts in handling consent and data permission systems minimising transaction costs.
- Brief introduction to the group
- Presentation of the WG’s First Report on State of the Art
- Open debate
- Next steps (getting ready for the WG’s second report on regulatory and legal issues)
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, Clinicians (to use data technology to improve practice), Biomedical researchers (using analytical techniques), Pharmaceutical industry researchers and manufacturers, Medical equipment researchers and manufacturers, In silico modelling, testing and clinical trial experts and other interested professionals.
Group chair serving as contact person: Edwin Morley-Fletcher
Type of meeting: Working meeting
Remote Access Instructions: coming soon