Presenters: Karolina Mackiewicz, Carina Dantas, Veli Stroetmann, Zoi Kolitsi, Samuel Jacinto, Tino Marti, Christiane Grunloh, Isabelle de Zegher, Bogi Eliasen, Risto Kaikkonen
Session host: Carina Dantas
Goal: The key goal of the session is to discuss and validate a set of conclusions on health data sharing governance models and campaigns, aiming to find a common pathway to engage different stakeholders’ perspectives and approaches.
Description: For data sharing, technology itself is not perceived as the main challenge, but questions such as data anonymisation, informed consent, digital literacy, interoperability, people’s lack of control over data and governance are key; privacy and security should be strengthened. Citizens are increasingly aware of the value of their data, and want to know what, how and what it is used for. Regulations need to be clear in what data needs special protections. These are some key points to discuss.
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