History teaches us that centralizing data — and power — is tempting, but risky. Having everything in one place seems convenient, but it also creates a single point of failure — technical, organizational, and even social. In healthcare, this is particularly problematic due to privacy concerns.
A federated approach offers an alternative: data stay where they originate — for instance, in hospitals — which can then be shared or summarized for research. It’s a more realistic and safer model because it maintains both responsibility and control.
The key challenge is how to assess data quality without having access to all the data at once. And even more fundamentally, what does “data quality” mean? Quality isn’t absolute; it’s about fitness for purpose. What’s “good enough” for one study may be entirely unsuitable for another.
My research focuses on evaluating data quality without direct access to the data themselves. Hospitals don’t share the actual data but rather securely processed characteristics that allow us to assess their quality without compromising patient privacy.
It’s a bit like judging a book by its blurb — you don’t see the complete text, but you have enough information to decide whether it’s worth reading. Likewise, a researcher can determine whether a dataset is “good enough” for their purposes without ever having physical access to it.
All three of us are part of the Czech node of BBMRI-ERIC, based at the Masaryk Memorial Cancer Institute in Brno. I’ve also been working at the BBMRI-ERIC headquarters in Graz, so our team is naturally divided between the two cities.
In Brno, we work under the auspices of the Association. Prof. Roman Hrstka brings the perspective of a biomedical researcher and practical experience with real-world hospital data. From Graz, we have strategic insight and informatics leadership from Assoc. Prof. Petr Holub, CIO of BBMRI-ERIC and my PhD supervisor.
This setup works beautifully because it connects two worlds that often operate separately – the day-to-day reality of working with data and the strategic framework of research infrastructures. Without this type of collaboration, our research would either lose touch with real practice or lack broader relevance.