An urgent call for action: tackling challenges with Primary Health Data as prerequisite for EHDS implementation

This white paper is an urgent call for collective action to tackle the foundational challenges in Belgium’s health data ecosystem and to prevent falling behind in meeting the requirements of the European Health Data Space (EHDS) and in reaping the full benefits of data-driven healthcare.
The transition to structured and interoperable health data is not merely a technical challenge or necessity, but a strategic imperative to improve patient care, enable evidence-based policymaking, and foster innovation. Achieving this will require genuine collaboration between clinicians, hospitals, public services, governmental bodies, IT providers, and researchers, as well as clear national direction and coordination.
The European Health Data Space directive mandates member states to enhance patient-centered care by making primary data more accessible, also resulting in an increased opportunity for secondary use for policy, research, and innovation. In Belgium, however, these goals are hindered by insufficiently structured registration at the source, fragmented data processes and initiatives, a diversity of ICT applications and tools, and a lack of implemented medical standards and harmonization, which inhibit interoperability and valorization of the data.
Since the authors of this whitepaper are convinced that the characteristics of and processes around primary health data are one of the fundamental prohibiting factors for leveraging their value for health (primary and secondary), the paper focuses on challenges in primary and secondary use intertwined.