The session will be dedicated to a needed update of the draft Report of the Blockchain Applications in Health presented at P17, additionally conducting an analysis of how ethical provenance (i.e. a chronologically ordered track of when important ethical steps have been taken, based on self-enforcing smart contracts) can be provided by blockchains, and an overview and critical assessment of blockchain applications for health data access permissioning also in distributed and possibly distrustful data networks.
Major questions need, in fact, to be further clarified as to how to exchange and permit access to health data, how individual providers and users of such data can interact and be allowed to undertake processing operations, and what specific data are capable of unleashing the greatest value, as highlighted also by the European Data Protection Board, which, in its published Work Plan 2021/2022, declared the intention to adopt as soon as possible a ‘Guidance on remuneration against personal data’.
The WG session will therefore be dedicated to an outline of a blockchain architecture including functionalities aimed at reducing the risk of possible fraudulent uses in health data marketplaces. This should include data provenance tracking functionalities also supporting the verification of the quality of a data product.
Furthermore, such a blockchain architecture should define an end-to-end secure, pay-for-computation system, which orchestrates distributed computations in conjunction with a token-based payment system directly tying the extent of data access to a working implementation in which privacy, the value of information and its actual price are all technically and operationally connected.
Initiatives for developing machine-readable permissioning frameworks will thus be reviewed and particular attention will be given to the value of these applications, and other privacy preserving technologies, in the context of data provenance and authenticity tracking, data quality assurance and data monetization.
In particular, the friction but also the synergies between privacy constraints, data scarcity and the value of data will be analysed presenting experiences of ongoing projects on platforms and data marketplaces in health which aim at bringing together ‘resource holders’ with potential 'resource users’, as well as intermediaries.
Other marketplace issues, including, technologies for resource valuation (based on their perceived utility) will also be explored, analysing how a permissioned immutable ledger of all resource (data, model, computation, etc.) transactions can support automated coordination and management of all resource requests through appropriate smart contract architectures, enabling effective management and full auditability of complex processing pipelines.
By facilitating the standardisation of resource provenance models, the blockchain layer should also significantly increase the findability, accessibility, semantic interoperability, and reusability of health data resources, and thus overall compliance with the FAIR principles.
Collaborative session notes: https://docs.google.com/document/d/1VV_xuSGMrmxx7RacTae7yAz5LKwDvsTG5euo...
- Wrapping-up on Blockchain Applications in Health WG's activities (completed)
- Presentations on Blockchain applications for health data marketplaces: issues and perspectives
- Q&A and discussion on topics presented
- Next steps to implement WG’s outputs
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.
The Blockchain Applications in Health WG was promoted by the Health Data IG in order to focus on Blockchain in Health data, with special regard to the potential of such a technology in enabling data sharing while ensuring compliance with advanced data protection requirements (such as those defined, for instance, by the EU General Data Protection Regulation – GDPR).
After two BoFs held at P9 in Barcelona and at P10 in Montreal, with rising interest in the RDA community, the WG was endorsed and had its first official meeting at P12 in Gaborone, while at P13 in Philadelphia the first goal described in the case statement – the “State of Art report” – was presented and discussed.
The Plenary in Helsinki (P14) was the occasion for further developing the outcomes of the meeting held at P13 and for addressing the second goal provided in the case statement, namely the report on legal regulatory issues.
The final goal of the WG (after 18 months) was to provide a set of comprehensive guidelines on Blockchain Applications in Health: these Guidelines were presented and discussed virtually at P17.
Recognised & endorsed. Completed. At P19 the Blockchain Applications in Health WG will be provide final updates on its activities.