Healthcare is digitizing at a rapid pace, but a good data infrastructure still lags behind. Health-RI and CumuluZ Care Data Foundation are therefore joining forces and working together on data availability for care, research, policy and innovation. In conversation with Leone Flikweert and Bart de Geus, they reveal how the arrival of the European Health Data Space (EHDS) is giving them the wind in their sails.
Healthcare information systems in the Netherlands are fragmented and dispersed. "It is a jumble of different systems that work differently and do not communicate with each other. A different program is used for the same kind of data within scientific research than in the consulting room," said Leone Flikweert, CEO of Health-RI.
"And when systems do communicate with each other, it doesn't automatically mean that the data are also suitable," argues Bart de Geus, Director of the CumuluZ Foundation. "Just having an infrastructure won't get you there."
Also read: 'No data exchange without connection'
From primary to secondary use
CumuluZ brings together healthcare organizations with the goal of improving data availability for the so-called primary use of data, the data that originates between patient and healthcare provider. They are working on a functionality that allows data from different systems to be available.
Health-RI focuses on the reuse of that data for research, innovation and policy, the so-called secondary use of data. "It sounds like one follows the other, but you need each other. We need data from the consulting room, and vice versa, research data are needed in that same room. You want to learn from each other, and right now that's not happening enough," Flikweert said.
According to De Geus and Flikweert, the fact that data systems do not communicate with each other or communicate insufficiently is due to four obstacles.
1. Unity of language missing
Many healthcare organizations register data in different ways. De Geus: "A well-known example is the use of abbreviations. Does LB now stand for left breast or left leg?" This seems trivial, but has implications for the quality and appropriateness of data.
He notices around him that organizations are also asking for help because they don't know where to start or what to comply with. "The way we're doing it now, it's not working. Despite all the efforts of healthcare providers and regional initiatives that are doing really good work, for example, we are not yet achieving the desired data availability."
2. Preconditions are not optimal
According to Flikweert, the preconditions are not well arranged, for example for the use of the Citizen Service Number (BSN). "For primary use of data in the hospital, a BSN is mandatory, but for research, i.e. secondary use, you are not allowed to use a BSN." As a result, this data cannot simply be safely and responsibly linked together without compromising patient privacy. The use of pseudonymized BSN would be the best solution.
Also read: 'Trust propels data exchange'
3. Pigeonholing
In an ideal world, Flikweert envisions one integrated system and an authority that can make all the data available. That would require behavioral change. "Everyone needs direction, but at the same time we don't want to give up our autonomy. You do things a certain way and if that suddenly has to change, it often evokes resistance."
Flikweert emphasizes the importance of collaboration. "You can't as an individual party say, 'I'm going to arrange this data availability.' You need the whole chain."
4. Lack of patient information
Not only is it a jumble of information for health care organizations, but also for citizens. "Patients often have no idea what happens to the data recorded about them. If we want to give people control over their health, it's important that they understand what it's about, how the system works and what and why what data is used," Flikweert said.
EHDS: obligation offers clarity
The European Health Data Space (EHDS) is a European law to ensure better and more secure availability of health data and regulation of the electronic patient record (EHR) market. At the national level and across national borders. By March 2029, all European countries must comply with the EHDS.
De Geus explains how the EHDS is positive for patients for primary use. "Suppose you go on vacation and there you end up in the emergency room. Nothing is then known about you there, with all the risks that entails." Better data availability prevents errors and results in faster and better care.
In addition, the EHDS allows researchers, subject to conditions, easier access to data to develop new treatments, drugs or prevention programs. Flikweert: "The idea behind the EHDS is to improve healthcare in Europe. The fact that it is a regulation, thus an obligation, helps. The legal framework of the EHDS is a blessing because that way everyone knows where they stand."
Also read: 'EHDS offers opportunity to better organize fragmented healthcare data'
Health data infrastructure in the future
According to De Geus, the goal is to "make data available at the times you need it, in the context in which you need it." How do we get and stay healthier with each other? "A well-established data infrastructure plays a crucial role in that."
Flikweert sees the dot on the horizon as a transparent system for all parties involved. "Creating the infrastructure itself is not the end goal. After all, that is improving healthcare in Europe. Left or right, we are together responsible for a working and learning health information system. And for better treatments, we need data to learn from."
November 6, 2025 Health-RI is organizing its annual conference at Jaarbeurs Utrecht. The theme is 'Thriving together into the health data space'. Speakers at the conference include Bart de Geus and Leone Flikweert about the concrete steps they are taking toward a sustainable health data infrastructure. For more information, please visit the website of Health-RI.
