An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved]
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 challen...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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F1000 Research Ltd
2021-11-01
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| Series: | Open Research Europe |
| Online Access: | https://open-research-europe.ec.europa.eu/articles/1-80/v2 |
| _version_ | 1818337196597313536 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Thijs Devriendt |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-13T14:51:22Z |
| format | Article |
| id | doaj.art-4e0a73b2dc8240bbb2c1deae52ecd943 |
| institution | Directory Open Access Journal |
| issn | 2732-5121 |
| language | English |
| last_indexed | 2024-12-13T14:51:22Z |
| publishDate | 2021-11-01 |
| publisher | F1000 Research Ltd |
| record_format | Article |
| series | Open Research Europe |
| spelling | doaj.art-4e0a73b2dc8240bbb2c1deae52ecd9432022-12-21T23:41:20ZengF1000 Research LtdOpen Research Europe2732-51212021-11-01110.12688/openreseurope.13860.215459An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved]Thijs Devriendt0Clemens Ammann1Folkert W. Asselbergs2Alexander Bernier3Rodrigo Costas4Matthias G. Friedrich5Josep L. Gelpi6Marjo-Riitta Jarvelin7Kari Kuulasmaa8Karim Lekadir9Michaela Th. Mayrhofer10Vaclav Papez11Gerard Pasterkamp12Steffen E. Petersen13Carsten Oliver Schmidt14Jeanette Schulz-Menger15Stefan Söderberg16Mahsa Shabani17Giovanni Veronesi18Darian Steven Viezzer19Pascal Borry20Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, BelgiumWorking 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, GermanyDepartment of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The NetherlandsCentre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, CanadaCentre for Science and Technology Studies (CWTS), Leiden University, Leiden, The NetherlandsDepartments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, CanadaDepartment of Biochemistry and Molecular Biomedicine, University of Barcelona, Barcelona, SpainDepartment of Life Sciences, College of Health and Life Sciences, Brunel University London, London, UKNational Institute for Health and Welfare, Helsinki, FinlandArtificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, SpainBBMRI, Graz, AustriaHealth Data Research UK, London, UKDepartment of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The NetherlandsBarts Heart Centre, Barts Health NHS Trust, London, UKInstitute for Community Medicine, Department SHIP-KEF, Greifswald University Medical Center, Greifswald, GermanyWorking 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, GermanyDepartment of Public Health and Clinical Medicine, Heart Centre, Umeå University, Umeå, SwedenMETAMEDICA, Department of Law and Criminology, Ghent University, Ghent, BelgiumResearch Center in Epidemiology and Preventive Medicine (EPIMED), Department of Medicine and Surgery, University of Insubria in Varese, Varese, ItalyWorking 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, GermanyCentre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, BelgiumVarious 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.https://open-research-europe.ec.europa.eu/articles/1-80/v2 |
| spellingShingle | 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 An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved] Open Research Europe |
| title | An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved] |
| title_full | An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved] |
| title_fullStr | An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved] |
| title_full_unstemmed | An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved] |
| title_short | An agenda-setting paper on data sharing platforms: euCanSHare workshop [version 2; peer review: 2 approved] |
| title_sort | agenda setting paper on data sharing platforms eucanshare workshop version 2 peer review 2 approved |
| url | https://open-research-europe.ec.europa.eu/articles/1-80/v2 |
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