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

Patient. 2024 Sep 16. doi: 10.1007/s40271-024-00713-7. Online ahead of print.

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.

Plain language summary

Drug companies often talk to patients about making new medicines. This is called patient engagement. It helps to ensure that new medicines are right for the patients who will take them. Patient engagement is useful, but it does not always happen. Sometimes, companies make important decisions without involving patients. All drug companies need to understand why it is important to listen and learn what patients need. We made a practical way to measure this value. Our team included people from Novartis (a drug company), and patient groups. We developed a structure called the ‘framework’. It measures: How we involve patients (‘Inputs’) What we learn from patients (‘Outputs’) How this benefits patients, healthcare systems, and companies (‘Value’) It can measure all steps from the start to the end of drug development. We invite other companies to use a similar approach and share what they measure. Doing this will show the value of patient engagement, to make it more standard practice.