SURPRISE

Description

Strengthening the Impact of Health Research by connecting Patient-driven Infrastructures for Citizen Generated Data Patients are increasingly collecting data themselves and sharing experiences about their health. This can contribute to research and insights that are valuable to others. Various patient communities have developed technical solutions on their own platforms to share this data and these experiences with each other and with researchers. This project identifies the top 10 best and most important solutions, investigates how these solutions can meet important standards for secure data exchange in accordance with the FAIR principles, and strengthens knowledge about good data management. A follow-up agenda will also be drawn up with topics and activities to improve access to data generated by patients themselves.

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