“Without public trust, it won’t work,” Zdenka Dudová talks about the future of health data

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.

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.

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.

I spent a little over a year in Berlin working as an IT coordinator for the German national node of BBMRI. The work itself was routine, but it gave me a unique opportunity to compare Czech and German eHealth environments. I attended many conferences and workshops in Berlin, which gave me a much broader perspective. In some areas, the Czech Republic was surprisingly ahead – for example with electronic prescriptions or electronic sick leave systems. But I also realized how complex coordination can be in a large federal country like Germany, where every change takes much longer. In the Czech Republic, we have the advantage of being a small country. We could be much more flexible – if we fully used that potential.

Our size can be an advantage. With sufficient political will, we could implement changes much faster than larger countries.

We also have strong communities around biobanking infrastructures like BBMRI and around national e-infrastructures, which are highly respected at the European level. Our experience with sensitive data management in biobanking is something we can bring into European eHealth projects. However, when it comes to national EHDS implementation, we are currently more in a catching-up phase than leading the discussion.

Quite significantly. During my studies, I worked in laboratories collecting and analysing data for scientific publications. That experience is something IT architects often lack. Shortly after finishing my PhD, I began working on projects involving sensitive data and building data infrastructures where data integration took place across institutions and countries. Today we would call this FAIRification. In one of these projects in 2019, I worked as a data steward – at a time when almost no one in the Czech Republic even knew the term. The role became more widely recognized only later, especially thanks to the EOSC CZ initiative.

Since then, I have naturally been connecting the world of researchers and the world of data infrastructures. My role is often to translate between scientists and IT experts – understanding what researchers need, what the technical possibilities are, and how to connect the two worlds so they can work together.

Technology itself is evolving very quickly, so that is not the main issue. The real challenge will be human capacity – we need people who understand data, security and legislation at the same time. And again, public trust will be crucial. Without it, the system simply cannot work. For some time, the old world of bilateral agreements between institutions will continue alongside the new EHDS infrastructure. Over time, it will become clear which system is faster and more reliable.

Probably the simplest advice: choose the right partner. Without that, it would not work. My husband took over a large part of childcare when our younger children were small, and we organised our work and family life flexibly. When I started my career, there were far fewer childcare options available. With our first two children we alternated a lot while still studying. Today institutions offer more support – childcare groups, flexible contracts and remote work options. That makes a huge difference.

Yes, although progress is still slow.There is now greater understanding for flexible work arrangements, part-time positions and leadership roles for parents. It is not universal yet, but the change is visible.

The best way for me to relax is physical work. Working in the garden, chopping wood, fixing things around the house – it helps me switch off mentally. Sometimes I even enjoy cleaning, but that usually means it has been a very intense week.

And then there are long family treks. We often spend several weeks hiking with backpacks. It combines adventure, family time and a break from emails. And interestingly, that is when new ideas about improving the research environment in the Czech Republic start flowing.