An agenda-setting paper on data sharing platforms: euCanSHare workshop

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

doi:10.12688/openreseurope.13860.2

An agenda-setting paper on data sharing platforms: euCanSHare workshop

Open Res Eur. 2021 Nov 23:1:80. doi: 10.12688/openreseurope.13860.2. eCollection 2021.

Authors

Thijs Devriendt¹, Clemens Ammann², Folkert W Asselbergs^{3

4

5

6}, Alexander Bernier⁷, Rodrigo Costas⁸, Matthias G Friedrich⁹, Josep L Gelpi^{10

11}, Marjo-Riitta Jarvelin^{12

13

14

15}, Kari Kuulasmaa¹⁶, Karim Lekadir¹⁷, Michaela Th Mayrhofer¹⁸, Vaclav Papez^{5

6}, Gerard Pasterkamp¹⁹, Steffen E Petersen^{6

20

21

22}, Carsten Oliver Schmidt²³, Jeanette Schulz-Menger^{2

24

25}, Stefan Söderberg²⁶, Mahsa Shabani²⁷, Giovanni Veronesi²⁸, Darian Steven Viezzer^{2

24}, Pascal Borry¹

Affiliations

¹ Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
² 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.
³ Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
⁴ Institute of Cardiovascular Science, Faculty of Population Health Sciences, University College London, London, UK.
⁵ Institute of Health Informatics, University College London, London, UK.
⁶ Health Data Research UK, London, UK.
⁷ Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Canada.
⁸ Centre for Science and Technology Studies (CWTS), Leiden University, Leiden, The Netherlands.
⁹ Departments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, Canada.
¹⁰ Department of Biochemistry and Molecular Biomedicine, University of Barcelona, Barcelona, Spain.
¹¹ Barcelona Supercomputing Center (BSC), Barcelona, Spain.
¹² Department of Life Sciences, College of Health and Life Sciences, Brunel University London, London, UK.
¹³ MRC-PHE Centre for Environment and Health, Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, London, UK.
¹⁴ Center for Life Course Health Research, Faculty of Medicine, University of Oulu, Oulu, Finland.
¹⁵ Unit of Primary Health Care, Oulu University Hospital, Oulu, Finland.
¹⁶ National Institute for Health and Welfare, Helsinki, Finland.
¹⁷ Artificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, Spain.
¹⁸ BBMRI, Graz, Austria.
¹⁹ Department of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
²⁰ Barts Heart Centre, Barts Health NHS Trust, London, UK.
²¹ William Harvey Research Institute, NIHR Barts Biomedical Research Centre, Queen Mary University of London, London, UK.
²² The Alan Turing Institute, London, UK.
²³ Institute for Community Medicine, Department SHIP-KEF, Greifswald University Medical Center, Greifswald, Germany.
²⁴ DZHK (German Centre for Cardiovascular Research) partner site, Berlin, Germany.
²⁵ Department of Cardiology and Nephrology, HELIOS Hospital Berlin-Buch, Berlin, Germany.
²⁶ Department of Public Health and Clinical Medicine, Heart Centre, Umeå University, Umeå, Sweden.
²⁷ METAMEDICA, Department of Law and Criminology, Ghent University, Ghent, Belgium.
²⁸ Research Center in Epidemiology and Preventive Medicine (EPIMED), Department of Medicine and Surgery, University of Insubria in Varese, Varese, Italy.

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.

Keywords: data infrastructure; data sharing; incentives; open science; science policy.

Grants and funding

This research was financially supported by the European Union’s Horizon 2020 research and innovation programme under the grant agreement Nos 116074 (project BigData Heart), 825903 (project euCanSHare), 825775 (project CINECA) and 824989 (project EUCAN-Connect).