F1000Research (Jul 2018)

Time to really share real-world data? [version 1; referees: 2 approved, 1 approved with reservations]

  • Sophie Graham,
  • Laura McDonald,
  • Radek Wasiak,
  • Michael Lees,
  • Sreeram Ramagopalan

DOI
https://doi.org/10.12688/f1000research.15517.1
Journal volume & issue
Vol. 7

Abstract

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Data other than that from clinical trials are important for healthcare decision making. However, unlike the vocal calls seen for more open access to trial data, there are limited efforts being made to ensure that agencies that collect real-world data (RWD) share this, despite its importance. There are many RWD sources across the world that could be readily exploited for research once shared. There are policy and privacy questions that need to be tackled, but opening up and sharing RWD offers remarkable potential for improvements in care for individuals and more effective use of limited healthcare resources. Open science should become the standard for RWD as well as clinical trials, especially those that have a high likelihood to influence practice.