Genome Medicine (Feb 2020)
Towards a European health research and innovation cloud (HRIC)
- F. M. Aarestrup,
- A. Albeyatti,
- W. J. Armitage,
- C. Auffray,
- L. Augello,
- R. Balling,
- N. Benhabiles,
- G. Bertolini,
- J. G. Bjaalie,
- M. Black,
- N. Blomberg,
- P. Bogaert,
- M. Bubak,
- B. Claerhout,
- L. Clarke,
- B. De Meulder,
- G. D’Errico,
- A. Di Meglio,
- N. Forgo,
- C. Gans-Combe,
- A. E. Gray,
- I. Gut,
- A. Gyllenberg,
- G. Hemmrich-Stanisak,
- L. Hjorth,
- Y. Ioannidis,
- S. Jarmalaite,
- A. Kel,
- F. Kherif,
- J. O. Korbel,
- C. Larue,
- M. Laszlo,
- A. Maas,
- L. Magalhaes,
- I. Manneh-Vangramberen,
- E. Morley-Fletcher,
- C. Ohmann,
- P. Oksvold,
- N. P. Oxtoby,
- I. Perseil,
- V. Pezoulas,
- O. Riess,
- H. Riper,
- J. Roca,
- P. Rosenstiel,
- P. Sabatier,
- F. Sanz,
- M. Tayeb,
- G. Thomassen,
- J. Van Bussel,
- M. Van den Bulcke,
- H. Van Oyen
Affiliations
- F. M. Aarestrup
- Technical University of Denmark
- A. Albeyatti
- Medicalchain
- W. J. Armitage
- Translation Health Sciences, Bristol Medical School
- C. Auffray
- European Institute for Systems Biology and Medicine (EISBM)
- L. Augello
- Regional Agency for Innovation & Procurement (ARIA), Welfare Services Division
- R. Balling
- Luxembourg Centre for Systems Biomedicine, Campus Belval, University of Luxembourg
- N. Benhabiles
- CEA, French Atomic Energy and Alternative Energy Commission, Direction de la Recherche Fondamentale, Université Paris-Saclay
- G. Bertolini
- Istituto di Ricerche Farmacologiche Mario Negri IRCCS
- J. G. Bjaalie
- Institute of Basic Medical Sciences, University of Oslo
- M. Black
- Ulster University
- N. Blomberg
- ELIXIR, Welcome Genome Campus
- P. Bogaert
- Sciensano, Brussels, Belgium and Tilburg University
- M. Bubak
- Department of Computer Science and Academic Computing Center Cyfronet, Akademia Gornizco Hutnizca University of Science and Technology
- B. Claerhout
- Ghent University
- L. Clarke
- European Molecular Biology Laboratory, European Bioinformatics Institute, Wellcome Genome Campus
- B. De Meulder
- Translation Health Sciences, Bristol Medical School
- G. D’Errico
- Fondazione Toscana Life Sciences
- A. Di Meglio
- CERN, European Organization for Nuclear Research
- N. Forgo
- University of Vienna
- C. Gans-Combe
- INSEEC School of Business & Economics
- A. E. Gray
- PwC, Dronning Eufemiasgate
- I. Gut
- Center for Genomic Regulations
- A. Gyllenberg
- Neuroimmunology Unit, The Karolinska Neuroimmunology & Multiple Sclerosis Centre, Department of Clinical Neuroscience, Karolinska Institute
- G. Hemmrich-Stanisak
- Institute of Clinical Molecular Biology, Kiel University and University Hospital Schleswig-Holstein
- L. Hjorth
- Department of Clinical Sciences, Pediatrics, Lund University, Skåne University Hospital
- Y. Ioannidis
- Athena Research & Innovation Center and University of Athens
- S. Jarmalaite
- National Cancer Institute
- A. Kel
- geneXplain GmbH
- F. Kherif
- Centre Hospitalier Universitaire Vaudois
- J. O. Korbel
- European Molecular Biology Laboratory, Genome Biology Unit
- C. Larue
- Integrated Biobank of Luxembourg, Rue Louis Rech
- M. Laszlo
- A. Maas
- Antwerp University Hospital and University of Antwerp
- L. Magalhaes
- Clinerion Ltd, Elisabethenanlage
- I. Manneh-Vangramberen
- European Cancer Patient Coalition
- E. Morley-Fletcher
- Lynkeus
- C. Ohmann
- European Clinical Research Infrastructure Network, Heinrich-Heine-Universität
- P. Oksvold
- Science for Life Laboratory, KTH Royal Institute of Technology
- N. P. Oxtoby
- Centre for Medical Image Computing, Department of Computer Science, University College London
- I. Perseil
- Information Technology Department, Institut National de la Santé et de la Recherche Médicale
- V. Pezoulas
- Unit of Medical Technology and Intelligent Information Systems, Department of Materials Science and Engineering, University of Ioannina
- O. Riess
- Institute of Medical Genetics and Applied Genomics, Rare Disease Center
- H. Riper
- Section Clinical, Neuro and Developmental Psychology, Department of Behavioural and Movement Sciences, Vrije Universiteit
- J. Roca
- Hospital Clínic de Barcelona, IDIBAPS, University of Barcelona
- P. Rosenstiel
- Institute of Clinical Molecular Biology, Kiel University and University Hospital Schleswig-Holstein
- P. Sabatier
- French National Centre for Scientific Research
- F. Sanz
- Hospital del Mar Medical Research Institute (IMIM), Universitat Pompeu Fabra
- M. Tayeb
- Medicalchain
- G. Thomassen
- University of Oslo
- J. Van Bussel
- Scientific Institute of Public Health
- M. Van den Bulcke
- Scientific Institute of Public Health
- H. Van Oyen
- Department of Computer Science and Academic Computing Center Cyfronet, Akademia Gornizco Hutnizca University of Science and Technology
- DOI
- https://doi.org/10.1186/s13073-020-0713-z
- Journal volume & issue
-
Vol. 12,
no. 1
pp. 1 – 14
Abstract
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.
