An agenda-setting paper on data sharing platforms: euCanSHare workshop
Open Research Europe, vol. 1, pp. 80
Abstract
Various data sharing platforms are being developed to enhance the sharing of cohort data by addressing the fragmented state of data storage and access systems. However, policy challenges in several domains remain unresolved. The euCanSHare workshop was organized to identify and discuss these challenges and to set the future research agenda. Concerns over the multiplicity and long-term sustainability of platforms, lack of resources, access of commercial parties to medical data, credit and recognition mechanisms in academia and the organization of data access committees are outlined. Within these areas, solutions need to be devised to ensure an optimal functioning of platforms.
Authors 21
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Thijs Devriendt corresponding
The University of Sydney · University of Basel · KU Leuven
Affiliation as printed
Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
. University of Basel, Basel, Switzerland
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Sydney Health Ethics, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
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The University of Sydney · University of Basel · Max Delbrück Center · Charité - Universitätsmedizin Berlin
Affiliation as printed
Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center, a joint cooperation between the Charité - Universitätsmedizin Berlin and the Max-Delbrück-Center for Molecular Medicine, Berlin, Germany
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Sydney Health Ethics, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW,
Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center,
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Utrecht University · University Medical Center Utrecht · Health Data Research UK · University College London
Affiliation as printed
Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
Health Data Research UK, London, UK
Institute of Cardiovascular Science, Faculty of Population Health Sciences, University College London, London, UK
Institute of Health Informatics, University College London, London, UK
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Affiliation as printed
Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Canada
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Affiliation as printed
Centre for Science and Technology Studies (CWTS), Leiden University, Leiden, The Netherlands
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McGill University Health Centre
Affiliation as printed
Departments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, Canada
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Barcelona Supercomputing Center · Universitat de Barcelona
Affiliation as printed
Barcelona Supercomputing Center (BSC), Barcelona, Spain
Department of Biochemistry and Molecular Biomedicine, University of Barcelona, Barcelona, Spain
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Oulu University Hospital · MRC Centre for Environment and Health · Imperial College London · Brunel University of London · University of Oulu
Affiliation as printed
Center for Life Course Health Research, Faculty of Medicine, University of Oulu, Oulu, Finland
Department of Life Sciences, College of Health and Life Sciences, Brunel University London, London, UK
MRC-PHE Centre for Environment and Health, Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, London, UK
Unit of Primary Health Care, Oulu University Hospital, Oulu, Finland
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Finnish Institute for Health and Welfare
Affiliation as printed
National Institute for Health and Welfare, Helsinki, Finland
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Affiliation as printed
Artificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, Spain
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Affiliation as printed
BBMRI, Graz, Austria
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Health Data Research UK · University College London
Affiliation as printed
Health Data Research UK, London, UK
Institute of Health Informatics, University College London, London, UK
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Utrecht University · University Medical Center Utrecht
Affiliation as printed
Department of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
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Queen Mary University of London · Barts Health NHS Trust · The Alan Turing Institute · Health Data Research UK · William Harvey Research Institute
Affiliation as printed
Barts Heart Centre, Barts Health NHS Trust, London, UK
Health Data Research UK, London, UK
The Alan Turing Institute, London, UK
William Harvey Research Institute, NIHR Barts Biomedical Research Centre, Queen Mary University of London, London, UK
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Universitätsmedizin Greifswald · Universität Greifswald
Affiliation as printed
Institute for Community Medicine, Department SHIP-KEF, Greifswald University Medical Center, Greifswald, Germany
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The University of Sydney · University of Basel · Max Delbrück Center · German Centre for Cardiovascular Research · Helios Hospital Berlin-Buch · Charité - Universitätsmedizin Berlin
Affiliation as printed
DZHK (German Centre for Cardiovascular Research) partner site, Berlin, Germany
Department of Cardiology and Nephrology, HELIOS Hospital Berlin-Buch, Berlin, Germany
Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center, a joint cooperation between the Charité - Universitätsmedizin Berlin and the Max-Delbrück-Center for Molecular Medicine, Berlin, Germany
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Sydney Health Ethics, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW,
Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center,
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Affiliation as printed
Department of Public Health and Clinical Medicine, Heart Centre, Umeå University, Umeå, Sweden
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Affiliation as printed
METAMEDICA, Department of Law and Criminology, Ghent University, Ghent, Belgium
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Affiliation as printed
Research Center in Epidemiology and Preventive Medicine (EPIMED), Department of Medicine and Surgery, University of Insubria in Varese, Varese, Italy
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The University of Sydney · University of Basel · Max Delbrück Center · German Centre for Cardiovascular Research · Charité - Universitätsmedizin Berlin
Affiliation as printed
DZHK (German Centre for Cardiovascular Research) partner site, Berlin, Germany
Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center, a joint cooperation between the Charité - Universitätsmedizin Berlin and the Max-Delbrück-Center for Molecular Medicine, Berlin, Germany
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Sydney Health Ethics, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW,
Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center,
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The University of Sydney · University of Basel · KU Leuven
Affiliation as printed
Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
. University of Basel, Basel, Switzerland
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Sydney Health Ethics, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
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