To do so, it has completed a landscape analysis of legal frameworks for health data collection and health data use underpinning the five cross-border research use cases of the project. This document aims to identify common elements and major differences between the national health data access bodies, Research infrastructures and EU agencies involved in the project which are legally and technically competent to gather and provide health data (nodes) and gather documentation (e.g. existing data application forms, data use policies, etc.).
A detailed questionnaire was filled in by the following nodes: BBMRI-ERIC (European Research Infrastructure), Health Data Lab (Germany), Danish Health Data Authority (Denmark), Findata (Finland), Health Data Hub (France), Sciensano (Belgium), Norwegian Directorate of eHealth (Norway) and Croatian Institute of Public Health (Croatia).
The findings, as well as the documentation gathered (e.g. existing data application forms, documentation to help the application, metadata catalogues, architecture of existing portals, data use/sharing policies) will allow identifying good practices, similarities and major pitfalls associated with each stage of health data discovery, health data access application process and use of health data, and will feed into the next outputs of WP7:
- Design of a common data application form leaving some leeway for nodes differences;
- Definition of general conditions of data use and security measures;
- Development of a model for data use agreement between nodes and data users.
Download the summary of the legal landscape analysis here.
