1.G. Round table: European Health Data Space - Development of a European metadata catalogue

Abstract

Abstract How to find who collects health-related data, where is this data stored and how to access it for research purposes on public health issues, policy making and crisis response? The recent COVID-19 pandemic, amongst others, brought to light two key aspects about health data in Europe; the complex and very heterogeneous landscape of health-related data collections and the lack of adherence of these collections to the FAIR principles, compromising their re-use by researchers and policy makers. More specifically, studies have shown that one of the main barriers to the re-use of health data has been the lack of findability, the lack of an inventory listing all kinds of datasets that can be made available and the way these datasets can be accessed. Such an inventory can be a metadata catalogue. A catalogue composed of metadata records, one for each dataset describing information about the dataset without giving access to the actual data. Considering the above findings, the need to have a common metadata catalogue at European level, presenting the health-related data that can be made available for secondary use, the European Commission drafted a legislative proposal for the creation of a European Health Data Space (EHDS). In this proposal the development of a European metadata catalogue has been mentioned in articles 38, 55 and 57. To start designing, developing and implementing some of the business capabilities mentioned in the legislative proposal, the Commission funded a 2-year project, the HealthData@EU pilot project. As part of this project, Sciensano is leading the work on the development of a standardised metadata record template for health-related datasets based on an already existing standard, the DCAT-AP. The aim is to extend this standard with a metadata vocabulary fit for the purpose of health-related datasets and hence designing and implementing the Health DCAT-AP standard. In this workshop we invite participants to learn about the developments of the HealthData@EU pilot project and, more specifically, the design of the European metadata record template for health-related datasets. Participants will have the opportunity to discover the latest developments regarding the HealthData@EU pilot project and the current situation in Europe regarding findability of health data, metadata catalogues and metadata standards. Moreover, they will get acquainted with the DCAT-AP metadata standard, the reasoning behind its use and practical examples from two other catalogues that are currently using it to describe health-related data collections, namely the European Health Information Portal and the EJPRD virtual platform. Finally, we will present the newest extension of this standard and will interact with the audience, using mentimeter, to get an idea of their understanding and their opinion regarding the additional health-related properties. Key messages • To learn the latest developments of the HealthData@EU pilot project, especially regarding the metadata catalogues. • In depth description of a health extension to the DCAT-AP metadata record standard template with two real-life examples. Speakers/Panelists Camille Cloitre Health Data Hub, Paris, France Miriam Saso Sciensano, Brussels, Belgium Pascal Derycke Sciensano, Brussels, Belgium Marc Hanauer EJPRD, Paris, France Truls Korsgaard Norwegian Directorate of e-health, Norway