Towards a European health research and innovation cloud (HRIC)
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- dc.contributor.author Aarestrup, Frank M.
- dc.contributor.author Gut, Ivo Glynne
- dc.contributor.author Sanz, Ferran
- dc.contributor.author Van Oyen, Herman
- dc.date.accessioned 2020-04-17T06:59:33Z
- dc.date.available 2020-04-17T06:59:33Z
- dc.date.issued 2020
- dc.description.abstract The European Union (EU) initiative on the Digital Transformation of Health and Care (Digicare) aims to provide the conditions necessary for building a secure, flexible, and decentralized digital health infrastructure. Creating a European Health Research and Innovation Cloud (HRIC) within this environment should enable data sharing and analysis for health research across the EU, in compliance with data protection legislation while preserving the full trust of the participants. Such a HRIC should learn from and build on existing data infrastructures, integrate best practices, and focus on the concrete needs of the community in terms of technologies, governance, management, regulation, and ethics requirements. Here, we describe the vision and expected benefits of digital data sharing in health research activities and present a roadmap that fosters the opportunities while answering the challenges of implementing a HRIC. For this, we put forward five specific recommendations and action points to ensure that a European HRIC: i) is built on established standards and guidelines, providing cloud technologies through an open and decentralized infrastructure; ii) is developed and certified to the highest standards of interoperability and data security that can be trusted by all stakeholders; iii) is supported by a robust ethical and legal framework that is compliant with the EU General Data Protection Regulation (GDPR); iv) establishes a proper environment for the training of new generations of data and medical scientists; and v) stimulates research and innovation in transnational collaborations through public and private initiatives and partnerships funded by the EU through Horizon 2020 and Horizon Europe.
- dc.description.sponsorship The workshop participants received funding from the European Union Seventh Program for Research, Technological Development and Demonstration (FP7) and Horizon Research and Innovation Program (H2020) and other European Union programs under the following grant agreements: AETIONOMY (Developing an Aetiology-based Taxonomy of Human Disease—Approaches to Develop a New Taxonomy for Neurological Disorders, IMI-no115568), ANTI-SUPERBUG PCP (ANTISUPERBUG Precommercial Procurement, H2020-no688878), B-CAST (Breast CAncer Stratification understanding the determinants of risk and prognosis of molecular sub-types, H2020-no633784), BRIDGE Health (Bridging information and data generation for evidence-based health policy and research, H2020-no664691), CASyM (Coordinating Action Systems Medicine—Implementation of Systems Medicine across Europe, FP7-n°305033), CENTER-TBI (Collaborative European NeuroTrauma Effectiveness Research in TBI, FP7-no602150), CECM (Centre for New Methods in Computational Diagnostics and Personalized Therapy, H2020-no763734), COLOSSUS (Advancing a Precision Medicine Paradigm in Metastatic Colorectal Cancer: Systems based patient stratification solutions, H2020-no754923), COMPARE (COllaborative Management Platform for detection and Analyses of (Re-)emerging and foodborne outbreaks in Europe, H2020-no643476), CONNECARE (Personalized Connected Care for Complex Chronic Patients, H2020-no689802), CREATIVE (Collaborative REsearch on ACute Traumatic brain Injury in intensiVe care medicine in Europe, FP7-no602714), DEFORM (Define the global and financial impact of research misconduct H2020-no710246), ECCTR (European Cornea and Cell Transplant Registry, FP7-n°709723), E-COMPARED (European COMPARative Effectiveness Research on online Depression, FP7-no603098), ECRIN-IA (European Clinical Research Infrastructures Network- Integrating Activity, FP7-no284395), EHR4CR (Electronic Health Records Systems for Clinical Research, IMI-no115189) eInfraCentral (European E-infrastructures Services Gateway, H2020-no731049), ELIXIR (European Life-science Infrastructure for Biological Information, FP7-n°211601), ELIXIR-EXCELERATE (Fast track ELIXIR implementation and drive early user exploitation across the life sciences, H2020-no676559), eMEN (e-mental health innovation and transnational implementation platform North West Europe, H2020), EMIF (European Medical Information Framework, IMI-no115372), ERA PerMed (ERA-net Cofund in Personalized Medicine, H2020-no779282), eTRIKS (Delivering European Translational Information and Knowledge Management Services, IMI-1-no115446), EuroPOND (Data-driven models for progression of neurological diseases, H2020-n°666992), EurValve (Personalized Decision Support for Heart Valve disease, H2020-no689617), HBP SGA1/SGA2 (Human Brain Project specific grant agreements, H2020-n°720270/785907), ICT4DEPRESSION (User-friendly ICT tools to enhance self-management and effective treatment of depression in the EU, FP7-n°248778), ImpleMentAll (Towards evidence-based tailored implementation strategies for eHealth, H2020-no733025), INSTRUCT-ULTRA (Releasing the full potential of instruct to expand and consolidate infrastructure services for integrated structural life sciences research, H2020-no731005), MASTERMIND (Management of Mental Disorders through Advanced Technologies, CIP-no621000), MeDALL (Mechanisms of the Development of ALLergy, FP7-n°261357), MedBioinformatics (Creating medically-driven integrative bioinformatics applications focused on oncology, CNS disorders and their comorbidities, H2020-n°634143), MIDAS (Meaningful Integration of Data, Analytics and Services, H2020-no727721), MultipleMS (Multiple manifestations of genetic and non-genetic factors in Multiple Sclerosis disentangled with a multi-omics approach to accelerate personalized medicine, H2020-no733161), myPEBS (Randomized Comparison Of Risk-Stratified versus Standard Breast Cancer Screening European Women Aged 40–74, H2020-no755394), OpenAIRE-Advance (Advancing Open Scholarship, H2020-no777541), OpenMedicine (OpenMedicine, H2020-n°643796), PanCareSurFup (PanCare Childhood and Adolescent Cancer Survival Care and Follow-up Studies, FP7-n°257505), PIONEER (Prostate Cancer DIagnOsis and TreatmeNt Enhancement through the Power of Big Data in EuRope, H2020-IMI-2-n°777492), PREPARE (Platform for European Preparedness Against (Re-)emerging Epidemics, FP7-n°602525), Regions4PerMed (Interregional coordination for a deep and fast uptake of personalized health, H2020-no825812), RD-CONNECT (An integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research, FP7-no305344), Solve-RD (Solving the unsolved Rare Diseases, H2020-no779257), SPIDIA4P (SPIDIA for Personalized Medicine-Standardization of generic Pre-analytical procedures for In-vitro DIAgnostics for Personalized Medicine, H2020-no733112), SYSCID (A Systems medicine approach to chronic inflammatory disease, H2020-no733100), SysCLAD (Systems prediction of Chronic Allograft Dysfunction, FP7-n°305457), SYSCOL (Systems Biology of Colorectal Cancer, FP7-no258236), SysMedPD (Systems Medicine of Mitochondrial Parkinson’s Disease, H2020-n°668738), U-BIOPRED (Unbiased BIOmarkers for the PREDiction of respiratory disease outcomes, IMI-n°115010), VPH-share (Virtual Physiological Human: Sharing for Healthcare—A Research Environment, FP7-n°269978).
- dc.format.mimetype application/pdf
- dc.identifier.citation Aarestrup FM, Albeyatti A, Armitage WJ, Auffray C, Augello L, Balling R et al. Towards a European health research and innovation cloud (HRIC). Genome Med. 2020; 12(1):18. DOI: 10.1186/s13073-020-0713-z
- dc.identifier.doi http://dx.doi.org/10.1186/s13073-020-0713-z
- dc.identifier.issn 1756-994X
- dc.identifier.uri http://hdl.handle.net/10230/44258
- dc.language.iso eng
- dc.publisher BioMed Central
- dc.relation.ispartof Genome Med. 2020; 12(1):18
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- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/633784
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/305033
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/602150
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/763734
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/754923
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/643476
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/689802
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/602714
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/710246
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/603098
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/284395
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/115189
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/731049
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- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/720270
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/785907
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- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/634143
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/727721
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/733161
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/755394
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/777541
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/643796
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/257505
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/777492
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/602525
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/825812
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/305344
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/779257
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/733112
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/733100
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/305457
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/258236
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/668738
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/115010
- dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/269978
- dc.rights © The Author(s). 2020 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
- dc.rights.accessRights info:eu-repo/semantics/openAccess
- dc.rights.uri http://creativecommons.org/licenses/by/4.0/
- dc.title Towards a European health research and innovation cloud (HRIC)
- dc.type info:eu-repo/semantics/article
- dc.type.version info:eu-repo/semantics/publishedVersion