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Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - MH-MD (My Health - My Data)

Teaser

Summary

MyHealthMyData (MHMD) aims at fundamentally changing the way sensitive data are shared. Through an innovative blockchain-based model tracking consent and peer-to-peer data transactions between healthcare stakeholders in a probative, secure, open and decentralized manner, MHMD can fuel Europeâ€™s future information economy in the health sector.

To achieve such a result, MHMD fosters a broad vision, in which: 1) patients and citizens will have new ways to gain access and control of their personal data; 2) hospitals will be facilitated in sharing data collected in clinical care to improve health services and to increase the value of the data, to support research, and to accelerate innovation towards establishing a system of rewards and of quantified value, in full legal and ethical compliance; 3) industries will be able to access rich, integrated and heterogeneous datasets to boost drug and technology development under strict privacy protection controls that at the same significantly reduce overall cost and time of data transactions.

The following objectives were specifically targeted in view of realising the MHMD vision:
1. To empower citizens with dynamic consent mechanisms, acting through smart contracts, to gain their trust with transparent solutions that protect and manage their personal information.
2. To increase the efficiency of data-driven functions in public and private environments with a system that harmonizes and semantically consolidates all authorized data
3. To implement a resilient and decentralised security control system to assess the legitimacy of data transactions against usersâ€™ consent and detect fraudulent activities in real time, both within and outside the network.
4. To unlock the value of very large volumes of biomedical data by allowing rapid merging of disparate, heterogeneous data sources and their lawful access by a third party to support a proper Big Data analytical framework.
5. To identify novel methodologies, processes, technology solutions and data management modalities not well covered yet by current regulatory frameworks and to offer guidance in the creation of new rules and best practices.

Work performed

During the first period, MHMD focused on the development of a first prototype, capable of demonstrating the key features of the system for hospitals, patients and researchers. The prototype, released in June 2018 (and demoed at the EU Digital Assembly in Sofia), allows hospitals and individuals to share data on the secure network and track their transactions, specifying the preferred permission and consent policies; it also allows interested researchers to browse the Data Catalogue (without leading to any risk of data breach) and to eventually access the selected cohort of de-identified datasets in full compliance with the GDPR. The set of integrated metadata appearing on the Catalogue is, in fact, purposely minimal while multi-layer secure computation and privacy-preserving methods are used in the background to compile aggregate query results estimating basic statistics and datasetsâ€™ contents to allow researchers and businesses to evaluate what information sources are relevant to their work.

Achieving these key goals has realized MHMD Minimum Viable Product (MVP), encompassing all basic features of the system:

1) A full analysis of the GDPR and user-specific requirements
2) Highly usable user interfaces, for individuals, hospitals and researchers, both as web and mobile interfaces;
3) An automatically updated, web-based Data Catalogue, showing all the datasets available with their specific access requirements, consent, textual explanations and descriptive statistics based on secure metadata integration;
4) New privacy-preserving and security tools to allow secure sharing and use, through classification of sensitive data and dynamic application;
5) A permissioned blockchain architecture for enforcing legitimacy of data transactions
6) A smart contract-based consent management tool to support the above objective.
7) A functional prototype integrating all these components and capable of handling real-world transactions on synthetic data.
The use of synthetic data has been both a practical and a highly innovative solution to accelerate development and testing in preparation for real data handling after hospital Ethics Committees will have approved the system configuration.

Final results

If successful, MyHealthMyData will improve the state of the art in a variety of domains. In particular, the project outcomes will contribute to the efficient and appropriate usage of dedicated privacy-preserving and security tools in health data, testing a number of different tools (including secure multi-party computation, k-anonymity, homomorphic encryption) on a variety of health datasets.

At the socio-economic level, MHMD will contribute to rebalancing EU competitiveness in the biomedical sector with advanced privacy-enhancing technologies, while preserving European higher privacy and data security standards for individuals. This will be mainly achieved thanks to both (1) its blockchain-based architecture for simplifying data sharing for hospitals, through advanced privacy-preserving and security tools; (2) its GDPR-compliant data sharing model designed for scalability at the industry and societal levels.

MHMD will also support patients in getting control over their personal health data, while protecting both the data subject and her personal data, thanks in particular to its smart-contract powered dynamic consent mechanism.
The combination of these innovations will lead to the creation of a novel European ecosystem, involving a network of data sharing centres (e.g., hospitals, clinics, labs) interested in feeding the platform by providing access to their wealth of data thanks to MHMD privacy enhancing features, secure and trustable conditions, thus enabling the set up of a knowledge network, revolving around an â€œInformation commonsâ€, providing continuous data flow from individuals and healthcare providers to the research community, harnessing data for improving European competitiveness in the field of precision and personalised medicine.