Open Research Europe (Nov 2021)
An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved]
- Thijs Devriendt,
- Clemens Ammann,
- Folkert W. Asselbergs,
- Alexander Bernier,
- Rodrigo Costas,
- Matthias G. Friedrich,
- Josep L. Gelpi,
- Marjo-Riitta Jarvelin,
- Kari Kuulasmaa,
- Karim Lekadir,
- Michaela Th. Mayrhofer,
- Vaclav Papez,
- Gerard Pasterkamp,
- Steffen E. Petersen,
- Carsten Oliver Schmidt,
- Jeanette Schulz-Menger,
- Stefan Söderberg,
- Mahsa Shabani,
- Giovanni Veronesi,
- Darian Steven Viezzer,
- Pascal Borry
Affiliations
- Thijs Devriendt
- Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
- Clemens Ammann
- 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
- Folkert W. Asselbergs
- Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
- Alexander Bernier
- Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Canada
- Rodrigo Costas
- Centre for Science and Technology Studies (CWTS), Leiden University, Leiden, The Netherlands
- Matthias G. Friedrich
- Departments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, Canada
- Josep L. Gelpi
- Department of Biochemistry and Molecular Biomedicine, University of Barcelona, Barcelona, Spain
- Marjo-Riitta Jarvelin
- Department of Life Sciences, College of Health and Life Sciences, Brunel University London, London, UK
- Kari Kuulasmaa
- National Institute for Health and Welfare, Helsinki, Finland
- Karim Lekadir
- Artificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, Spain
- Michaela Th. Mayrhofer
- BBMRI, Graz, Austria
- Vaclav Papez
- Health Data Research UK, London, UK
- Gerard Pasterkamp
- Department of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
- Steffen E. Petersen
- Barts Heart Centre, Barts Health NHS Trust, London, UK
- Carsten Oliver Schmidt
- Institute for Community Medicine, Department SHIP-KEF, Greifswald University Medical Center, Greifswald, Germany
- Jeanette Schulz-Menger
- 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
- Stefan Söderberg
- Department of Public Health and Clinical Medicine, Heart Centre, Umeå University, Umeå, Sweden
- Mahsa Shabani
- METAMEDICA, Department of Law and Criminology, Ghent University, Ghent, Belgium
- Giovanni Veronesi
- Research Center in Epidemiology and Preventive Medicine (EPIMED), Department of Medicine and Surgery, University of Insubria in Varese, Varese, Italy
- Darian Steven Viezzer
- 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
- Pascal Borry
- Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
- DOI
- https://doi.org/10.12688/openreseurope.13860.2
- Journal volume & issue
-
Vol. 1
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.
