Public database inventorying the national health databases and registries
The digitisation of healthcare has brought new opportunities to complement and enhance the data traditionally utilized in regulatory decision-making through the exploitation of routinely collected “Real World Data”. The report, developed within the EOSC-life project, delivers an inventory of national health databases and registries covering 15 European countries: Austria, Czech Republic, France, Germany, Hungary, Ireland, Italy, the Netherlands, Norway, Poland, Portugal, Slovakia, Spain, Sweden, and Switzerland. For each country the reader can find information on the national healthcare system, a list of health databases and registries, their description (or links to websites where this description can be found) and information on data access for research purposes.
In short, the picture across Europe is diverse and at times patchy as the health databases and registries are subject to different governance and sustainability models but also to different local laws and access rules. Interestingly, there is still, on a European level, great debate around the terms “anonymisation”, “pseudonymisation” and “de-identification” and when data can be considered anonymised and as such exempted from the GDPR. Additionally, even when the current barriers of discoverability and accessibility (that are the main focus of this report) are lifted, there remains the major question of whether such data sources are suitable for research, as concerns around their quality, completeness and structure (or lack of) are still to be addressed.