Useful links: Real-World Data and Learning Health Systems

Real-world data (RWD) and learning health systems help improve drug development by using real patient experiences to refine therapies and improve decision-making. They enable personalized medicine, smarter clinical trials and continuous improvements in health care. However, challenges, such as data accuracy, privacy and system compatibility, are still to be resolved to realize their full potential.

  • Health-RI is a National Growth Fund Initiative dedicated to improving the reuse of health data for policy, research, and innovation to achieve a learning healthcare system. They operate a National Health Data Portal with a catalogue on health data, cBioPortal (web-based resource for researchers to explore multidimensional cancer genomics data sets), XNAT (open-source imaging informatics platform), LibreClinica (for digital data capture in clinical studies using CRFs) and the ELSI Servicedesk (for ethical and legal questions on use of data and body material)