BLOG – Data Saves Lives/EHDEN Patient Registries Bootcamp
On 5-6 December 2023, I had the pleasure to be part of the third Data
On 5-6 December 2023, I had the pleasure to be part of the third Data
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.
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.
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.
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.