ELIXIR-LU and LCSB contribute to the development of a European Health Data Space
March 11, 2021
Advances in health and biomedical sciences require that health research is performed timely, efficiently and oriented to high-quality results. To meet this need and to maximise the impact of health research, adopting best practices in health data management is essential. One of the priorities of the European Commission 2019-2025 is the creation of a European Health Data Space (EHDS). The EHDS will be a means to improve health research and its translation to healthcare at all levels: from public health to personalised medicine, through secondary use of health data. The new European project HealthyCloud, financed by the European Commission, brings together 19 European research partners amongst which the Luxembourg Centre for Systems Biomedicine (LCSB) of the University of Luxembourg to deliver a Strategic Agenda for the implementation of the European Health Research and Innovation Cloud (HRIC), which will be one of the cornerstones of the EHDS.
“In the HealthyCloud project, we have joined forces from multiple health and health- related domains to shape the future Health Research and Innovation Cloud”, said Juan González-García, Biocomputing Unit Manager at the Institute for Health Sciences in Aragon (IACS) and HealthyCloud co-coordinator. “HealthyCloud will pave the way for an effective health-related data sharing across Europe, contributing to the realisation of the European Health Data Space. It is important to understand existing barriers that limit the effective exchange of health- related data. This effort will allow us to propose ethically sound, legally compliant and technically feasible open standards and protocols to overcome them”, said Salvador Capella, Spanish National Bioinformatics Institute (INB) coordination Node leader at the Barcelona Supercomputing Center (BSC) and HealthyCloud Co-coordinator.
The strategic agenda will incorporate consolidated feedback from a broad range of stakeholders, including the European Commission, the Member States and regional, national, European and international relevant initiatives. These agents will be invited to be part of the HealthyCloud Stakeholder Forum, designed to facilitate the dialogue among them and the consortium, and to act as an umbrella to bring together similar efforts in specific domains. HealthyCloud has been organised around four fundamental objectives that cover:
- interactions with stakeholders to ensure their voices are included as part of the strategic agenda
- inclusion of Ethical, Legal and Societal aspects (ELSI) in the design of the future HRIC ecosystem
- sustainable access, use and re-use of health-related data, available in several data collections spread in data hubs, considering a progressive adoption of the FAIR principles
- technological solutions in terms of computational facilities and mechanisms to enable distributed health data analysis across Europe.
“With regards to health data, secure and responsible data management are of utmost importance. We are happy to contribute our longstanding expertise in these domains to the development of a European Health Data Space,” explains Prof. Reinhard Schneider, principal investigator of the LCSB’s Bioinformatics Core and head of ELIXIR-Luxembourg. Schneider and his team will lead the development of ELSI compliance for the governance of the future HRIC decentralised platform (Health Research and Innovation Cloud), as well as the design of the architecture for FAIR-based meta-catalogue of health data.
The project is driven by two real-world use cases on cancer and atrial fibrillation, which will ensure that propositions by domain-specific and technological experts are technically and ethically sound, as well as legally compliant. The ultimate goal is to propose the blueprint to create an ecosystem that builds and reinforces the trust of patients and citizens in the use of their health data for research actionable through a portal that serves as an interface to interact with the cloud services.
HealthyCloud (Health Research & Innovation Cloud) is funded by the European Commission with a budget of €3 million and is active from 1 March 2021 to 31 August 2023. It brings together 21 organisations from 11 countries with broad and yet complementary expertise, including European Research Infrastructure Consortiums, national public health institutes, data hubs and academic institutions.
The partners of the project are Instituto Aragonés de Ciencias de la Salud (IACS), Sciensano, European Clinical Research Infrastructure Network (ECRIN), EGI Foundation, Biobanks and Biomolecular Resources Research Infrastructure Consortium (BBMRI-ERIC), European Advanced Translational Research Infrastructure in Medicine (EATRIS), Euro- BioImaging, Universitat de Barcelona (UB), Technologie Und Methodenplattform Fur Die Vernetzte Medizinische Forschung Ev (TMF), Finnish Institute for Health and Welfare (THL), Austrian National Public Health Institute (GÖG), Barcelona Supercomputing Center (BSC), European Molecular Biology Laboratory (EMBL), Servicio Andaluz de Salud (SAS), University of Luxembourg (UNILU), Centre for Genomic Regulation (CRG), CSC - IT Center for Science, University of Tartu, German Network for Bioinformatics Infrastructure (de.NBI-Cloud), Serviços Partilhados do Ministério da Saúde Epe (SPMS), Leiden University Medical Center (LUMC).Go back to the news