The balance to be met is to keep data closed enough for citizen protection, but open enough for research. This means achieving an ethical balance, avoiding any harm to the patient, while doing societal good in research. The use of federated data networks, such as EHDEN, implicitly protect patient data by keeping data local, behind local firewalls and approval processes, inclusive of local consent requirements, whilst aggregating population-level information, not patient-level data from analysis. This is privacy by design.
The overarching goal of the EHDEN project is to foster a thriving European community that better shares health data research, and in particular, to enable federated analyses of real- world healthcare data to ultimately improve patient treatment and outcomes. By definition, this is not something that the project partners can do alone: rather, we see our project as a catalyst to come together and build this with hundreds of other projects and organizations.