University of Oulu

Devriendt T, Ammann C, Asselberghs FW et al. An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 1; peer review: 2 approved] Open Research Europe 2021, 1:80, https://doi.org/10.12688/openreseurope.13860.1

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

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Author: Devriendt, Thijs1; Ammann, Clemens2; Asselberghs, Folkert W.3,4,5,6;
Organizations: 1Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
2Working 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
3Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
4Institute of Cardiovascular Science, Faculty of Population Health Sciences, University College London, London, UK
5Institute of Health Informatics, University College London, London, UK
6Health Data Research UK, London, UK
7Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Canada
8Centre for Science and Technology Studies (CWTS), Leiden University, Leiden, The Netherlands
9Departments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, Canada
10Department of Biochemistry and Molecular Biomedicine, University of Barcelona, Barcelona, Spain
11Barcelona Supercomputing Center (BSC), Barcelona, Spain
12MRC-PHE Centre for Environment and Health, Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, London, UK
13Center for Life Course Health Research, Faculty of Medicine, University of Oulu, Oulu, Finland
14Unit of Primary Health Care, Oulu University Hospital, Oulu, Finland
15Department of Life Sciences, College of Health and Life Sciences, Brunel University London, London, UK
16National Institute for Health and Welfare, Helsinki, Finland
17Artificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, Spain
18BBMRI, Graz, Austria
19Department of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
20Barts Heart Centre, Barts Health NHS Trust, London, UK
21William Harvey Research Institute, NIHR Barts Biomedical Research Centre, Queen Mary University of London, London, UK
22The Alan Turing Institute, London, UK
23Institute for Community Medicine, Department SHIP-KEF, Greifswald University Medical Center, Greifswald, Germany
24DZHK (German Centre for Cardiovascular Research) partner site, Berlin, Germany
25Department of Cardiology and Nephrology, HELIOS Hospital Berlin-Buch, Berlin, Germany
26Department of Public Health and Clinical Medicine, Heart Centre, Umeå University, Umeå, Sweden
27METAMEDICA, Department of Law and Criminology, Ghent University, Ghent, Belgium
28Research Center in Epidemiology and Preventive Medicine (EPIMED), Department of Medicine and Surgery, University of Insubria in Varese, Varese, Italy
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 1.3 MB)
Persistent link: http://urn.fi/urn:nbn:fi-fe2021111254969
Language: English
Published: F1000 Research, 2021
Publish Date: 2021-11-12
Description:

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.

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Series: Open research Europe
ISSN: 2732-5121
ISSN-E: 2732-5121
ISSN-L: 2732-5121
Volume: 1
Article number: 80
DOI: 10.12688/openreseurope.13860.1
OADOI: https://oadoi.org/10.12688/openreseurope.13860.1
Type of Publication: A1 Journal article – refereed
Field of Science: 113 Computer and information sciences
3142 Public health care science, environmental and occupational health
Subjects:
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).
EU Grant Number: (824989) EUCAN-Connect - A federated FAIR platform enabling large-scale analysis of high-value cohort data connecting Europe and Canada in personalized health
Copyright information: © 2021 Devriendt T et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
  https://creativecommons.org/licenses/by/4.0/