The NHC and NPC Partner to Publish Paper on Patient-Community Perspectives on Real-World Evidence

Wednesday, January 23, 2019

By: Jennifer Schleman, Senior Director, Marketing, Communications and Public Relations

The National Health Council (NHC) and the National Pharmaceutical Council (NPC) co-authored Patient-Community Perspectives on Real-World Evidence: Enhancing Engagement, Understanding, and Trust published this week in the peer-reviewed journal The Patient – Patient-Centered Outcomes Research.

The paper, which is based on information gathered during a day-long, multi-stakeholder meeting in July 2017 in Washington, DC, summarizes patient-community views on real-world evidence (RWE) and related concerns, and the information and tools patients needed to understand, trust, and use RWE.

Participants emphasized the importance of and opportunity inherent in the emergence of RWE. However, significant challenges are posed by study-design complexity and absence of clear standards for conducting and communicating RWE, especially to patients. The paper describes 10 emerging themes:

  1. Most patients were unaware of RWE and its actual or potential uses,
  2. Common definitions for real-world data and RWE are needed,
  3. Patient organizations need RWE skills and tools,
  4. Patient-scientist partnerships can help differentiate high-quality RWE,
  5. RWE should inform decision making,
  6. Clinician support is needed for RWE uptake in patient decision making,
  7. Communications to patients should be balanced and empowering,
  8. Context of use impacts RWE acceptability and trust,
  9. Privacy and data ownership require clarity, and
  10. Patient-generated data are also real-world data (RWD).

“The themes we identified and the needs for moving forward will aid policy makers, researchers, clinicians, and patient groups in efforts to enhance understanding of, trust in, and engagement with RWE to inform decision making by all stakeholders,” concluded study authors Dr. Elisabeth Oehrlein, Senior Director of Research and Programs at the NHC; Dr. Jennifer Graff, Vice President of Comparative Effectiveness Research at the NPC; Dr. Eleanor Perfetto, Senior Vice President of Strategic Initiatives at the NHC; and Jason Harris, former Associate Director of Policy and Programs at the NHC.

For more information on the NHC’s work on RWE, visit the Real-World Evidence section of our website.