ISPOR examines how real-world evidence can be improved with patient-provided information

Reviewed by Alina Shrourou, B.Sc. (Editor)May 24 2019

ISPOR, the professional society for health economics and outcomes research (HEOR), examined how real-world evidence can be improved with patient-provided information this afternoon at its ISPOR 2019 annual conference with the session [W13], "Leveraging Patient-Provided Information to Improve Real-World Evidence: Getting to Good Practices on How."

Despite agreement that patient experiences should inform real-world study designs, best practices are lacking on exactly how patient-provided information (PPI) translates into improved real-world evidence (RWE) studies. Discussion leaders for the session included:

• Cristina Masseria, MSc PhD; Pfizer; New York, NY, USA
• Elisabeth Oehrlein, PhD, MS; National Health Council; Washington, DC, USA
• Chris L. Pashos, PhD; AbbVie US LLC; North Chicago, IL, USA
• Richard J. Willke, PhD; ISPOR; Lawrenceville, NJ, USA

ISPOR partnered with the International Society for Pharmacoepidemiology (ISPE) to form a Joint Special Task Force on Real-World Evidence in Healthcare Decision Making. ISPOR and ISPE held a Summit in October 2017 on this issue and the Special Task Force produced and published 2 papers and an editorial in this area.

As part of their objective to improve the rigor of RWE, the Joint ISPOR-ISPE Special Task Force recommended that stakeholder engagement be included for good procedural practices when designing, conducting, and disseminating RWE. Good practices exist on how to collect patient input, but do not exist on translating the input into specific study-design and/or methods considerations. To accomplish patient centricity in RWE, an urgent need exists to explore how to best translate PPI into specific study considerations.

Dr Willke reviewed the intent of the ISPOR/ISPE Special Task Force's recommendations for researchers and perspectives on moving the field forward. Dr Oehrlein provided an overview of the topic with a case study on incorporating atrial fibrillation patient experiences into an RWE study design. Drs Masseria and Pashos built on their experiences to offer suggestions for incorporating PPI into RWE study designs using different types of datasets for different markets. The discussion leaders then facilitated a group discussion based on specific examples of how RWE study designs can benefit from patient-provided input.

Employing patient insights into the disease and treatment situation is invaluable for designing a meaningful, impactful real-world study."

Richard J. Willke, PhD, ISPOR