Patient-Community Perspectives on Real-World Evidence: Enhancing Engagement, Understanding, and Trust


This study, conducted by researchers at the National Pharmaceutical Council and the National Health Council, sought to assess the attitudes on real-world evidence (RWE) among patient organizations. 

Researchers convened representatives from patient organizations for a day-long, multi-stakeholder roundtable to evaluate what patients currently know about RWE, their level of trust in RWE and their interest in using it in decision-making.

Researchers found that while most participants were initially unaware of RWE and its actual or potential uses, they recognized the ability of  RWE to provide relevant information to support decision-making.

Though the patient community agreed that RWE should inform decision-making, they flagged key areas of need:

  • Increase awareness among patient organizations and improve capacity to support uptake of RWE
  • Ensure optimal use of RWE with balanced information and clinicians championing use of RWE for decision-making
  • Provide more clarity around privacy and ownership of data from patient encounters with the health system and agree on ways to include patient-generated data