“Without public trust, it won’t work,” Zdenka Dudová talks about the future of health data
Health data are among the most sensitive – but also among the most valuable – resources for research. How will the emerging European Health Data Space (EHDS) transform researchers’ access to data? What will it mean for Czech institutions? And why is public trust so crucial for the future of health data sharing? We spoke with Zdenka Dudová, who works at Masaryk University on international projects focused on health data and has long been involved in European initiatives such as EHDS2 Pilot, TEHDAS2 and BBMRI-ERIC. She also leads the Sensitive Data Working Group within the EOSC CZ initiative.
13th Mar 2026 Lucie Skřičková
Health data are now among the most sensitive yet most valuable resources for research. Why are they becoming such a central topic in European debate right now?
The current way health data are handled – especially when it comes to their secondary use for research – is simply not sustainable in the long term. Most hospitals do not have systems that can easily and quickly provide data for research projects. This applies even to the basic ability to share patient data between hospitals.
Researchers often receive the requested datasets only after weeks or months of approval processes, manual searching and data preparation – and the data often arrive in varying quality. I know this well from the biobanking environment: if you request clinical data linked to a biological sample, it requires considerable effort from the biobank staff and colleagues across different hospital departments.
This issue became particularly visible with the rise of artificial intelligence projects. AI clearly demonstrated the enormous potential of health data – but also how difficult it is to access, protect and integrate them, and how poorly interoperable many datasets still are. Suddenly, the gap between expectations and reality became obvious.
Another reason why health data are now receiving so much attention – at least in the EU – is the new regulation establishing the European Health Data Space (EHDS). This builds on earlier initiatives such as the General Data Protection Regulation (GDPR) and the Directive on patients’ rights in cross-border healthcare, which already aimed to establish common rules for managing and using personal data.
The European Health Data Space promises a major shift in how health data are shared and used. What should researchers working with digital health data – eHealth – imagine in practice?
EHDS addresses two different dimensions. The first concerns primary health data – data generated in the context of diagnosing and treating patients. The goal is to ensure that healthcare systems can finally communicate with each other and that patients can easily access their medical records. Ideally, a patient should not have to repeatedly explain their medical history when moving between hospitals. A doctor abroad should quickly access essential medical documentation if a patient seeks treatment while travelling. And countries should finally use compatible data standards – something that often does not even work within a single city today.
The second dimension concerns the secondary use of health data for research, innovation and policymaking. Here, EHDS could represent a major shift for researchers. At the European level, a catalogue of datasets suitable for secondary use will be created. Access to these datasets will be transparent and standardized across the EU, with predictable timelines and predefined fees for preparing requested datasets.
It will always be possible to see who requested which data and for what purpose. If pseudonymized individual-level data are required, they will not be sent directly to researchers. Instead, they will be processed in Secure Processing Environments, where only aggregated, privacy-safe outputs can be exported. If aggregated statistical data are sufficient, researchers will receive them directly.
In my view, this is a promising alternative to the current situation where data are sometimes exchanged via email or where each hospital shares data in a different way. Research teams then spend a lot of time cleaning and restructuring the data before they can use them. EHDS aims to introduce standards that have already been common in research environments for years – but now applied to primary healthcare data
Do you think EHDS is also changing the overall culture of working with data in science?
Yes, absolutely. Until now, data sharing was often based on personal contacts, different technical solutions and mutual trust between the researcher and the data holder. Data sharing agreements were typically negotiated individually for each project. EHDS introduces standardised rules, transparency and clear documentation of data use. Importantly, it should also make it possible to request multiple datasets from different countries through a single application. Researchers who already have established collaborations can still use existing channels. But for those without personal networks or established partnerships, the EHDS infrastructure will provide a completely new opportunity.
At the same time, the understanding of data security is evolving. Previously, it was widely assumed that anonymizing data solved the problem. But modern technologies – especially AI – can sometimes re-identify individuals by combining indirect indicators from different datasets.
Within the Open Science II project, where I lead an expert team working on sensitive data management within the National Data Infrastructure, we are testing how robust anonymization techniques are and how to establish rules that ensure real anonymity.
You are involved in the TEHDAS2 project, which prepares guidelines for EHDS implementation. What is the biggest challenge in turning the regulation into reality?
Interestingly, technology itself is usually not the biggest problem. IT experts are highly motivated to develop the necessary systems. The bigger challenge is whether countries will have the capacity to implement the regulation at the national level. This includes legislative changes, human resources and computing infrastructure. Currently, most EU countries are building Health Data Access Bodies, which will manage access to health data. In the Czech Republic, the discussion has started, but there is still no clear implementation plan.
But beyond legislation and technology, the most important factor is public trust. Without public confidence that their data will be handled safely, people will simply not agree to their detailed health information being used for research. Unfortunately, the Czech Republic still has a significant gap here. EHDS is hardly discussed in public. When I lived in Germany in 2023, public debate about health data was already much more active.