De Raad van Universitaire Ziekenhuizen werd opgericht in 1998. De vereniging heeft tot doel de initiatieven en de belangen van de zeven universitaire ziekenhuizen in België inzake onderzoek, tertiaire zorg en opleiding van geneesheer-specialisten te coördineren en te verdedigen.
Introduction, scope, and aim
True to their tradition and the tasks appointed by law, the 7 Belgian university hospitals combine top care with top scientific research and top education, building on evidence-based medicine. Today more than ever, university hospitals do so in a data-driven landscape. High expectations and ambitions with regard to the secondary use of health-related data collected in the real world, including routinely collected data, characterise today’s society. With clock-like regularity and increasing variability in purpose, scope and nature, university hospitals receive internal and external requests for the secondary use of health-related data. Examples include the support of evidence-based medicine and value-driven healthcare strategies, the development of medical devices, including those relying on machine learning and artificial intelligence, the conduct of projects that ensure the safe and high-quality care we all deserve…
The commitment of the Belgian university hospitals remains unchanged: providing excellent specialist healthcare and excellent clinical care for patients with complex or rare medical conditions. The contributions made to the collection of meaningful data are an essential part of that commitment. When not only high in quantity but also quality, data are an important ingredient in building knowledge, creating innovation, and, ultimately, providing better care for all.
The 7 Belgian university hospitals support the secondary use of health-related data. They offer a wealth of domain expertise required to assess the relevance of data and data analytics, considering the potential and limitations that characterise data collected in care. Domain experts can moreover assess the relevance, correctness, and scientific underpinning of the conclusions resulting from the processing of health-related data.
At the same time, the 7 Belgian university hospitals are well aware of and accept the responsibility connected to their role as a guardian of electronic patient health records. The pressure to see to the protection of patient data and increase the attention for the rights of the patient as a data subject is high – and rightfully so. The lack of a clear framework that allows the evaluation of the secondary use of data is experienced as a bottleneck.
To that end, the Belgian university hospitals developed a framework for handling requests for the secondary use of data collected in the real world, including routinely collected data (hereinafter abbreviated as RWD).
The aim of the framework is not to hamper the secondary use of RWD. RWD should be available to support non-commercial and commercial initiatives. However, a race to the bottom in the safeguards applied when processing health-related data for secondary purposes is something we wish to call a halt to. The developed framework clarifies the conditions for the secondary use needed to provide an answer to the call for patient empowerment and ensure GDPR compliance.
