Landscape analysis of FAIRness levels of health-related data using catalogue matrix

This document, Deliverable 3.1, presents the final analysis of the survey results. The
survey results were analysed to perform a FAIRness evaluation of the data
infrastructures that have been selected for the scope of the use cases and also to
answer the question of feasibility of linking individual level data. This deliverable
builds on Milestone 3.2, which presented the initial analysis of the results relating
to the cancer use case, focusing only on the results received from the Finnish data
infrastructures. D3.1 extends the analysis to include all the survey results.
In relation to the cancer use case, the list of relevant data collections to survey was
identified in collaboration with the cancer use case leaders and HealthyCloud
partners from Belgium, Finland, Germany and Spain. The research question on
cancer requires individual level data linkage from the health interview survey,
health examination survey, cancer registry, genomic data collections and statistical
registries for socioeconomic data. The research question on atrial fibrillation
requires different types of data from patient registries in Europe, such as ECG, MRI,
biomarkers, genomic and clinical data. The list of relevant data collections was
identified in collaboration with the atrial fibrillation use case.
We received 20 responses to the survey out of a total of 26 surveys sent.
In this document we present the administrative information about each data
infrastructure, information about the data they provide, such as the level of
aggregation, whether it is anonymised or pseudonymised, about data quality
aspects, coverage and standards used to structure the data and regarding the
compliance with the FAIR principles.