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.

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

Veronesi, Giovanni
Writing – Review & Editing
;
2021-01-01

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.
2021
2021
data infrastructure; data sharing; incentives; open science; science policy
Devriendt, Thijs; Ammann, Clemens; W Asselbergs, Folkert; Bernier, Alexander; Costas, Rodrigo; Friedrich, Matthias G; Gelpi, Josep L; Jarvelin, Marjo-Riitta; Kuulasmaa, Kari; Lekadir, Karim; Mayrhofer, Michaela Th; Papez, Vaclav; Pasterkamp, Gerard; Petersen, Steffen E; Schmidt, Carsten Oliver; Schulz-Menger, Jeanette; Söderberg, Stefan; Shabani, Mahsa; Veronesi, Giovanni; Viezzer, Darian Steven; Borry, Pascal
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11383/2168911
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