MyHealthMyData (MHMD): Deliverable 11.2 - Project Presentation

This document contains the presentation of the project, as well as the presentation materials, and aims at introducing MyHealthMyData (MHMD) scopes and peculiar features. MHMD is intended to address the topical issues underlying the sharing, management and protection of personal health data in the EU context. Its goal is to develop the first open biomedical information network centred on the connection between organisations and the individual, aiming at encouraging hospitals to start making anonymised data available for open research through MHMD secure federated Infostructure, while prompting citizens to become the ultimate owners and controllers of their health data. MHMD profiles and classifies sensitive data based on their informational and economic value, and assesses the most suitable and robust de-identification and encryption technologies needed to secure different types of information, while still allowing advanced knowledge discovery through analytics and deep learning applications running on a growing amount of anonymised or pseudonymised data. The system will rely on the introduction of some key innovations, including: <strong>Blockchain</strong>: a digital ledger where information relating to the distributed storage of the health data is trimmed in hash-based language code, making it possible both to assign to each dataset a unique, fully traceable, digital Persistent Identifier (PID), and to associate it with metadata describing exactly what type of data are available, and referring to what cohorts of patients, while data transactions are continuously validated to the entire network of stakeholders, avoiding any possibility of fraudulent usage; <strong>dynamic consent: </strong>the possibility for individuals to provide different types of consent according to distinct potential data uses, taking control over who will access his/her data and for what purpose; <strong>personal data accounts: </strong>personal data storage clouds enabling individual access from any personal device through the blockchain in a probative, secure, open and decentralized manner; <strong>smart contracts: </strong>self-executing contractual states, based on the formalisation of contractual relations in digital form, which are stored on the blockchain and automate the execution of peer-to-peer transactions under user-defined conditions; <strong>multilevel de-identification and encryption technologies: </strong>advanced techniques for encoding and de-associating sensible data from the owners’ identity (<em>i.e.</em> multi-party secure computation, homomorphic encryptions), while allowing analytics applications to leverage the information.