Multi-stakeholder use of patient experience data (PED): current state and future opportunities for the application of PED to inform decision-making

Patient experience data (PED) encompass information on patient’s experiences, disease impact, and treatment preferences. PED are critical inputs to the drug development process and help ensure medicines are developed with the interests of patients in mind. The authors (all members of the Industry Special Interest Group and Regulatory and Health Technology Assessment Engagement Special Interest Group of the International Society for Quality of Life Research) have conducted a scoping review of how regulatory agencies, health technology assessment (HTA) bodies, private payers, clinicians, and patients currently use PED for decision-making. Recommendations are provided to address key challenges influencing multi-stakeholder use of PED.