Health data is gathered in different ways across Europe. The HealthData@EU Pilot has started identifying recommendations that will aim to ensure such data can be used across borders for research and decision-making.
Led by BBMRI-ERIC, work package 8 (WP8) “Data interoperability, quality and protection” aims to provide recommendations on interoperability of health data throughout the HealthData@EU user journey. It also studies quality controlling and more generally quality assurance mechanisms that are to be implemented by the HealthData@EU Nodes.
Its first milestone “Preliminary recommendations on standards for data interoperability, querying and exchange (common data model, terminologies)” frames the work of WP8, which is meant to be observational, collecting knowledge and experiences from the five cross-border use cases of the project, and giving recommendations to them only upon request. Indeed, the use cases will have to deal with the quality of the data they would be reusing and with the quality of their own results.
Similarly, security and privacy measures must be in place. WP8 second milestone “Preliminary recommendations for the quality controlling, assurance & provenance and on application of privacy enhancing technologies, data security and node compute capabilities” gathers relevant existing knowledge on quality and security aspects. These preliminary recommendations are based on related projects, initiatives and organisations, some of them with a broad scope (namely Joint Action TEHDaS, EMA and EOSC) and others more specific and more tight to the work done by the use cases, such as BBMRI-ERIC, OHDSI, FHIR, BY-COVID, PHIRI and EGA. Comparisons are made between recommendations, ISO standards and quality levels. The milestone also discusses commonly used security technical measures spanning all steps of the HealthData@EU user journey.
The work presented in these milestones is to be continued during the rest of the HealthData@EU pilot project. Specifically, the current content will be adapted to the needs and circumstances experienced by the cross-border use cases, including challenges and lessons learnt from the development of their projects.
Finally, the general security measures included in the second WP8 milestone will be further developed in the WP7 “Report on data use and security based on the selected use cases”, due in July 2023.