High-value research, particularly in fields such personalized health, relies on high-quality data, and tools to find and process these data. Achieving this in accordance with European values requires that data are processed ethically, and in a way that respects the rights of data subjects.
We will present our experiences of setting up an international network for epidemiological studies across the life of individuals, and associated challenges in the implementation of European Health Data Spaces.
Presenters:
Artur Rocha has been a senior researcher at the Portuguese research institute INESC TEC since 1998. He is the coordinator of HumanISE – Human-centered computing and Information Science.
His interests include personalised health research, platforms and methods for collaborative research, privacy-preserving distributed computation, the semantic sensor Web (IoT) and Big Data processing.
He has extensive expertise in fields such as mental health, epidemiology and immunogenetics, where storage and processing of sensitive data, and controlled FAIR data sharing are of great importance.
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Vasco Rosa Dias is Data Protection Officer (DPO) at INESC TEC and ISPUP. While INESC TEC focuses on new technologies, ICT and computer science, ISPUP is a Public Health research institute.
He is also a member of the Ethics Committee of INESC TEC, and integrated the ethics and privacy governance bodies of several EU or international research projects. He is a member of the pool of Experts of the European Data Protection Board for new technologies.
His main topics of interest and research cover the fields of EU law, technology regulation and data protection.