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