From Methods to Implementation: Real-World and Regulatory Applications of Patient Experience Data Through Patient Experience Mapping & Patient Involvement

PURPOSE: To educate health economics and outcomes research (HEOR) professionals on the Patient Experience Mapping Toolbox (PEMT), a set of publicly available resources to help researchers engage and document patients’ experiences, its real-world applications, and how it complements other patient initiatives.

DESCRIPTION: Patient experience data (PED) and patient engagement are critical to patient-centered outcomes in healthcare delivery research, drug development, and regulation. Meaningful patient engagement is bi-directional, and patients must be included as equal partners from the inception. Developed by patients, the PEMT can be used to collect disease-specific PED to inform a range of uses, including drug development and joint clinical assessments. To date, the PEMT has been applied to studies that ascertain patients’ treatment tradeoffs, as well as the experiences of diverse patients with food allergies and chronic kidney disease in the U.S. The use of this tool could be beneficial to broader global audiences. Through this workshop, HEOR-EU professionals will hear from patient engagement experts demonstrating applications of the PEMT and identify opportunities to enhance their patient-centered research methods.

Ms. Schoch will provide an overview of the PEMT and its methodology, including reviewing case examples. Dr. Oehrlein will demonstrate how the PEMT has been applied in real-world settings to build evidence for drug development. Dr. Mitchell will discuss the relevance of the PEMT to European settings, its potential applications, and how it complements European patient involvement initiatives. Dr. Gilardino will explain how the PEMT complements other patient and public involvement activities, including pilot projects with NICE and PBAC led by HTAi’s Patient and Citizen Involvement Groups, to implement an international template supporting patient submissions in HTA. This workshop will feature real-time polling via Slido, allowing participants to engage on using PEMT in global real-world studies and HEOR. There will be a 15-minute interactive panel discussion responding to audience Q/A.