Finanziamento UE – NextGenerationEU PRIN PNRR 2022 - Project "PADS4Health - Privacy-Aware Data Sharing model for Health data" PNRR M4C2 investimento 1.1 Avviso 14/09/22

The PADS4Health project aims to foster the development of a scalable privacy-friendly datamanagement model by addressing the issues related to health data sharing between public entities(research institutes, hospitals, etc.). In particular, the attention is focused on possible confl ictswhich may arise from data controllers and data subjects with respect to further data processing forscientifi c research purposes in the most challenging scenario, namely clinical and medicalresearch. The project will design and verify the feasibility of a novel type of Personal InformationManagement System (the “PADS4Health model”), which can be seen as a Privacy EnhancingTechnology (PET), where data controllers (e.g. research centres, universities) and data subjects(e.g. patients) are both envisaged within data protection. On the side of data subjects, the aim ofthis model is to foster their awareness of the processing of personal data and, in particular, healthdata, by providing them with a simple but consistent way to consult and control the personal dataprocessed by data controllers through a user-friendly dashboard, embedded as an additionalfeature of a digital platform, through which also data subjects may easily exercise their rights. Fromthe point of view of data controllers, the PADS4Health model will be based upon a robust dataprotection impact assessment, by taking into account individual needs, in order to inform datasubjects about data transfer and draw up which information is adequate and relevant for furtherdata sharing. In this way, it should be possible to effectively implement, in practice, the principles ofaccountability and data minimisation, as well as data protection by design and by default, as setout by the General Data Protection Regulation and other legal acts (Data Governance Act, OpenData Directive, etc). The model that will be designed during the project is also functional to anonymise or aggregatedatasets that are contained in current hospitals’ databases, in order to strengthen mechanisms toincrease data protection and further processing, as well as to overcome legal and technical. burdens to the reuse of data by also fostering interoperability. Therefore, it will be possible topresent the building block of a more complex federated Health Data Space - aligned with theEuropean Union goal of promoting Data Spaces for research, which is also considered by the newDGA and Open Data Directive - which can be used by public entities, especially research centres,for domestic and cross-border data fl ow. In this sense, a novel type of data-sharing managementsystem will enhance data sharing, benefi t the whole research community, and increase datasubjects’ awareness of operations that involve special categories of personal data, such as healthdata. To build up this new model of data exchange real use-case scenarios will be addressed inmedical and clinical research studies.