The ECHAlliance organised a session in the MyData 2020 Conference, with the key goal of discussing and validating the preliminary conclusions on citizen-controlled health data sharing governance, mostly developed under the DigitalHealthEurope project and presented in the Consultation paper under this theme.
Some of the points identified as “discussion starters” relate to the route to find a common pathway that engages different stakeholders’ perspectives and approaches in the discussion about data sharing uncovered that technology itself is not perceived as the main challenge. 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 about what data needs special protection.
Karolina Mackiewicz, ECHAlliance, chaired the session with a varied panel of experts representing different sectors and professional experiences:
The main conclusions, summarised in key points, target the need to: