BLOG – Avoiding the ‘not-invented-here’ syndrome will benefit all
No one is big enough alone to master the complex future. Curious minds could help here in learning from others and building on accomplished work. It seems that even politicians and decision makers are sharing the same mindset: bringing in more cohesion and bridging different aspirations together is the efficient way forward. Ecosystems and collaboration are the keys for sustainable future despite of the differences.
Read More
BLOG – Keeping data closed enough for citizen security, but open enough for research
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.
Read More
BLOG – The Patient Community, Engagement, and Insights around RWD/RWE
To become more of an equal partner, patients and patient groups need to be better versed in health data literacy to be able to meaningfully engage and contribute to shaping discussions, and the course of RWD/RWE.
Read More
BLOG – Open standards for success in federated health data research
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.
Read More