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

Thijs Devriendt1, Clemens Ammann2, Folkert W Asselbergs3,4,5,6

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This summary is machine-generated.

Developing data sharing platforms faces policy challenges. Addressing issues like sustainability, resources, and data access is crucial for optimal platform function and advancing cohort data sharing.

Keywords:
data infrastructuredata sharingincentivesopen sciencescience policy

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Area of Science:

  • Health Informatics
  • Data Science
  • Bioinformatics

Background:

  • Cohort data sharing is fragmented across various storage and access systems.
  • Existing data sharing platforms require policy solutions to overcome unresolved challenges.

Purpose of the Study:

  • Identify and discuss policy challenges in cohort data sharing platforms.
  • Set a future research agenda for optimizing data sharing platforms.
  • Address concerns regarding platform multiplicity, sustainability, and resource allocation.

Main Methods:

  • Organized the euCanShare workshop.
  • Facilitated discussions on policy challenges.
  • Outlined key areas for future research and solutions.

Main Results:

  • Identified concerns including platform multiplicity and long-term sustainability.
  • Highlighted issues with resource availability and commercial access to medical data.
  • Discussed the need for robust credit/recognition mechanisms and data access committees.

Conclusions:

  • Solutions are needed to ensure the optimal functioning of data sharing platforms.
  • Addressing policy challenges is essential for effective cohort data sharing.
  • Future research should focus on sustainability, resource management, and equitable data access.