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

1. Thijs Devriendt corresponding

   University of Basel · KU Leuven

   Affiliation as printed

   . University of Basel, Basel, Switzerland

   Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium

2. Clemens Ammann
   Affiliation as printed

   Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center,

3. Folkert Wouter Asselbergs

   Utrecht University · University Medical Center Utrecht · Health Data Research UK

   Affiliation as printed

   Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands

   Health Data Research UK, London, UK

4. Alexander Bernier

   McGill University

   Affiliation as printed

   Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Canada

5. Rodrigo Costas Aachen Centre for Science and Technology Studies

   Leiden University

   Affiliation as printed

   Centre for Science and Technology Studies (CWTS), Leiden University, Leiden, The Netherlands

6. Matthias G. Friedrich

   McGill University Health Centre

   Affiliation as printed

   Departments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, Canada

7. Josep Lluis Gelpí

   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

8. Marjo‐Riitta Järvelin

   MRC Centre for Environment and Health · Imperial College London · Brunel University of London

   Affiliation as printed

   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

9. Kari Kuulasmaa

   Finnish Institute for Health and Welfare

   Affiliation as printed

   National Institute for Health and Welfare, Helsinki, Finland

10. Karim Lekadir

    Universitat de Barcelona

    Affiliation as printed

    Artificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, Spain

11. Michaela Th. Mayrhofer
    Affiliation as printed

    BBMRI, Graz, Austria

12. Václav Papež

    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

13. Gerard Pasterkamp

    Utrecht University · University Medical Center Utrecht

    Affiliation as printed

    Department of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands

14. Steffen Erhard Petersen

    Barts Health NHS Trust · The Alan Turing Institute · Health Data Research UK

    Affiliation as printed

    Barts Heart Centre, Barts Health NHS Trust, London, UK

    Health Data Research UK, London, UK

    The Alan Turing Institute, London, UK

15. Carsten Oliver Schmidt

    Universitätsmedizin Greifswald · Universität Greifswald

    Affiliation as printed

    Institute for Community Medicine, Department SHIP-KEF, Greifswald University Medical Center, Greifswald, Germany

16. Jeanette Schulz‐Menger

    German Centre for Cardiovascular Research · Helios Hospital Berlin-Buch

    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,

17. Stefan Söderberg

    Umeå University

    Affiliation as printed

    Department of Public Health and Clinical Medicine, Heart Centre, Umeå University, Umeå, Sweden

18. Mahsa Shabani

    Ghent University

    Affiliation as printed

    METAMEDICA, Department of Law and Criminology, Ghent University, Ghent, Belgium

19. Giovanni Veronesi

    University of Insubria

    Affiliation as printed

    Research Center in Epidemiology and Preventive Medicine (EPIMED), Department of Medicine and Surgery, University of Insubria in Varese, Varese, Italy

20. Darian Viezzer

    German Centre for Cardiovascular Research

    Affiliation as printed

    DZHK (German Centre for Cardiovascular Research) partner site, Berlin, Germany

    Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center,

21. Pascal Borry

    University of Basel · KU Leuven

    Affiliation as printed

    . University of Basel, Basel, Switzerland

    Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium