1. An agenda-setting paper on data sharing platforms: euCanSHare workshop
- Author
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Gerard Pasterkamp, Pascal Borry, Thijs Devriendt, Jeanette Schulz-Menger, Folkert W. Asselberghs, Darian Steven Viezzer, Clemens Ammann, Kari Kuulasmaa, Karim Lekadir, Rodrigo Costas, Carsten Oliver Schmidt, Alexander Bernier, Michaela Th. Mayrhofer, Matthias G. Friedrich, Stefan Söderberg, Mahsa Shabani, Vaclav Papez, Josep Lluís Gelpí, Steffen E. Petersen, Marjo-Riitta Järvelin, and Giovanni Veronesi
- Subjects
0301 basic medicine ,Open science ,Computer science ,data infrastructure ,incentives ,data sharing ,Set (abstract data type) ,03 medical and health sciences ,0302 clinical medicine ,open science ,Medicine and Health Sciences ,030304 developmental biology ,0303 health sciences ,Articles ,Data science ,Data sharing ,science policy ,030104 developmental biology ,Incentive ,Data access ,Cardiovascular and Metabolic Diseases ,Sustainability ,Science policy ,State (computer science) ,030217 neurology & neurosurgery ,Research Article - 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.
- Published
- 2021