Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework

Beyza Klein (), Eleanor M. Perfetto, Elisabeth M. Oehrlein, Fay Weston, Trudie C. A. Lobban and Marc Boutin
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Beyza Klein: Novartis Pharma AG
Eleanor M. Perfetto: University of Maryland
Elisabeth M. Oehrlein: Applied Patient Experience
Fay Weston: Patient Author
Trudie C. A. Lobban: Arrhythmia Alliance
Marc Boutin: Novartis Pharma AG

The Patient: Patient-Centered Outcomes Research, 2025, vol. 18, issue 1, No 2, 3-18

Abstract: Abstract As the pharmaceutical industry advances towards more patient-focused product development, it is well recognized that meaningful patient engagement is required for the authentic patient voice to inform research and regulatory decisions. However, for this to happen systematically and consistently across the industry, there is still a need to evaluate and communicate the value of patient engagement to all stakeholders. Evaluating engagement also informs process improvement, elevating the value further. We describe the development of a conceptual, yet practical, framework for measuring the impact of engagement to achieve this. The framework depicts how metrics can be used to capture and assess the inputs, outputs, and value of patient engagement across the medicines lifecycle. Although conceived in the context of systems and processes within one company, Novartis, the framework was co-created with patient advisors and designed to be both patient-relevant and adaptable for any pharmaceutical organization. The adoption and evolution of the framework will help to demonstrate the value—to patients, healthcare systems, and businesses—of integrating patient engagement into core activities across the medicines lifecycle. We encourage the pharmaceutical industry to apply impact measurement to build a robust evidence base, through measuring, publishing, and communicating the value of patient engagement.

Date: 2025
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DOI: 10.1007/s40271-024-00713-7

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