VALO Metadata catalogues – final report

This report describes the work done in the task 2.6 of the VALO project funded by the Nordic Council of Ministers. It describes the current situation of the national health data catalogues in the Nordic countries, the development plans, and the preliminary planning on how to implement HealthDCAT-AP metadata specification in the national health data catalogues. It also touches upon to the main challenges seen at the moment regarding HealthDCAT-AP specification and the future goals seen in the Nordic health metadata co-operation.

There has already been previous co-operation in the Nordic countries regarding metadata issues supporting secondary use of health data. This project builds on the previous work, and also the informal Nordic Health Metadata Network was incorporated into the task’s work. Every Nordic country has published metadata on key health data sources already for some time, and a national or semi-national health data catalogue exists in Finland, Norway and Sweden. Denmark is currently developing a national health data catalogue, Sweden is developing a prototype for a national catalogue building on the existing one and Finland is further developing the existing national health data catalogue.

HealthDCAT-AP is the metadata specification being developed for use in the European Health Data Space (EHDS2). The key challenges of HealthDCAT-AP draft from the Nordic perspective include lack of shared understanding on the information model, lack of hierarchy in the information model, ambiguity about how datasets should be defined and some technical complexity and terminology inconsistencies. For upcoming work it is proposed to continue building shared understanding of HealthDCAT-AP and looking for as harmonious way as possible to implement the HealthDCAT-AP in the national health data catalogues.

Proposed solutions include creating possible enrichments of HealthDCAT-AP in the national catalogues in a harmonious way, including common Nordic variable metadata specification, implementing data quality and utility labelling in a harmonious way and aiming for harmonised dataset definitions.