EBRAINS at the World Health Summit 2022

Świeboda was joined on the panel by Petra Ritter (Charité Berlin), Steve MacFeely (WHO), Marlies Dorlöchter (ERA-NET NEURON), Mehdi Snène (I-DAIR), and Ruxandra Draghia Akli (Johnson & Johnson).

The panel discussed how a Global Health Data Space - which could help treat and govern health data as a global public good - could be achieved.

Petra Ritter introduced the panel by highlighting human health data's sensitivity: "Such data contains very personal information (...) it can be abused, and therefore it needs to be protected."

She underlined the need for researchers who could use health data to understand diseases and health conditions better: "We need to support researchers and innovators with complex organizational requirements (...) In addition, we need to offer researchers and innovators trustable research infrastructure where they can do complex simulations or analysis of such sensitive health data."

Ritter also provided an overview of EBRAINS HealthDataCloud - an upcoming service on EBRAINS. The Health Data Cloud will offer users a GDPR-compliant, federated research data ecosystem that enables neuroscience research consortia across Europe and beyond to work with sensitive neuroscience data originating from human subjects and defined routes for sharing the data and results.

Świeboda's presentation touched on several topics related to health data sharing. He provided an overview of the European Health Data Space pilot project, which EBRAINS is a member of. The pilot project will address the challenges surrounding access to health data in the EU - and could serve as inspiration for the Global Health Data Space. He stressed the importance of collaboration going forward: "We are on the path towards a Global Health Data Space - but we need to undertake some joint commitments to get there."

Watch the recording of the panel discussion: