For better Healthcare, 
Research & Policy Making    

Health Data Agency

By making health data more easily, securely and transparently available to agencies, institutions and companies to design sustainable health policies based on scientific research.

Our vision

The Belgian Health Data Agency (HDA) strives for a high-quality, data-driven healthcare system in which health (care) data and data related to health (care) are available for secondary use in a uniform, transparent and secure manner. To achieve this, the HDA focuses on the following objectives: 

  1. Facilitate the availability of health (care) data and health (care) related data; 
  2. Develop secure and reliable methods for the exchange of personal health data, with an emphasis on cybersecurity; 
  3. Develop and implement a policy strategy on health (care) data and health (care) related data; 
  4. Stimulate innovation, scientific research and policy support research that can contribute to better, affordable, preventive and targeted healthcare. 
  5. Ensuring the trust of citizens and patients by emphasising transparency and security around the re-use of health data, while respecting the rights and obligations of the parties involved
Introduction video to the Belgian Health Data Agency

Our mission

The Belgian Health Data Agency (HDA), in collaboration with regional and federal data holders and users, will facilitate access to quality health (care) data and data related to health (care) in a simplified and more uniform, reliable, transparent and secure manner, through the development of a framework in which the re-use (secondary use) of quality health (care) data and data related to health (care) is optimally facilitated. Within the framework of the tasks described in the law, the HDA supports the re-use of health and health-related data for population management, health prevention and healthcare policy, through research and innovation based on health needs and the active role of citizens, thereby contributing to better health and quality of life. 

History

The establishment of the Health Data Agency (HDA) is a significant step toward realizing the European Commission’s 2019-2024 political priority 'A Europe for the Digital Age' within the health space in Belgium. The EU's Digital Strategy provides for the creation of a European health data space (EHDS) to promote targeted research, diagnosis and treatment.

The healthcare system needs to be transformed. Demographic and technological developments have an impact on the healthcare system. Improving the quality and accessibility of healthcare and adapting healthcare to the new needs of patients are therefore key objectives.

Numerous data on health are collected: health care utilization, mortality, causes of death, social security information, clinical data and health insurance reimbursement data are routinely collected for the management and operation of health and social security services. Information on the health status and health care of the population is fragmented across organizations and systems. There is not yet an integrated federal initiative that facilitates the use and reuse of these data for health policy and health research.

The coalition agreement and the Public Health Policy Paper of 28 October 2021 set the creation of the Health (Care) Data Agency as an objective:

  • The HDA should support the transition of the Belgian health (care) system to data-driven care;
  • Central to this is making data available for policy support, innovation, research and product development;
  • The easy, uniform, transparent and secure availability of health data in all its facets should lead to higher quality, affordable, preventive and targeted care for every citizen.

Together with the five founding organizations (FAMHP, FPS, KCE, NIHDI and Sciensano), the HDA was set up. The HDA was established by law the 14th of March 2023 as an ASAA (administrative service with accounting autonomy) with enterprise number 0800309782.

As mentioned in the law, the governing bodies of the Health Data Agency are the Governance Board and the User Board. The Governance Board is a strategic body competent to carry out the acts necessary to accomplish the missions of the Health Data Agency. The User Board assists it in this task. To this end, the User Board is responsible for formulating proposals or advice to the Governance Board, on its own initiative or on request. These bodies comply with a public code of deontology.

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European Context

Within the broader strategic priority of 'A Europe for the Digital Age,' the European Commission has set forth the creation of domain-specific European common data spaces as a key focus. The "European Health Data Spaces" (EHDS) emerges as a central initiative, addressing challenges in electronic health data access and sharing. Aligned with the vision of a unified European health union, EHDS aims to establish a secure, interoperable, and privacy-respecting digital health landscape by working towards: 

  • Empowering individuals through increased digital access to and control of their electronic personal health data,

  • Supporting the use of health data for better healthcare delivery, better research, innovation and policy making and  

  • Enabling the EU to make full use of the potential offered by a safe and secure exchange, use and reuse of health data 

In this evolving digital landscape, the Health Data Agency can play an important role for Belgium. The HDA's operational framework is purposefully designed to align with the EHDS and future initiatives, ensuring ongoing compliance with European legal requirements. Operating from an inter-federal standpoint, the HDA collaborates with the Belgian health(care) ecosystem to foster cross-region and cross-border collaboration.  

EHDS's empowerment of individuals in controlling their electronic health data aligns with the HDA's commitment to privacy. By facilitating reliable and secure data usage for researchers, innovators, and policymakers, both EHDS and the HDA contribute significantly to the vision of a cohesive and digitally advanced European health ecosystem. 

In this context, several European projects have been launched by the European Commission to prepare the implementation of this new European Health Data Space, some of which, such as HeDERA, contribute directly to the missions of the HDA.

Annual Report

The HDA Annual Report presents the highlights of the year 2023 up to the official launch of the Agency. It describes the Belgian context in which the HDA was set up and the national and European reasons for its creation. The report also describes the strategic and operational objectives, as well as the actions and personnel, and provides an overview of the programme's achievements for 2023.

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