Novartis unveils new framework to measure patient engagement value

Pharma News: Novartis has spearheaded a first-of-its-kind framework aimed at measuring and demonstrating the value of patient engagement across the medicines lifecycle.

As the pharmaceutical industry shifts towards more patient-centric health technology development, the importance of meaningful patient engagement is becoming increasingly essential. However, systematic evaluation and communication of the value of patient engagement remains a significant challenge across the industry.

In the literature search conducted by the authors, including Beyza Klein, the former Global Patient Engagement Director, Insights & Measurements at Novartis who has recently transitioned to Johnson & Johnson Innovative Medicine (formerly Janssen), the findings were striking.

“We found no single standardised instrument able to assess all aspects of patient engagement across the medicines lifecycle, and no validated tools for measuring the societal-level impact of patient engagement in the context of medicines development,” Klein et al noted.

To address this gap, a working group of industry stakeholders collaborated with a council of patient expert advisors to co-create a framework that allows for the tracking of patient engagement activities, insights gathered, resulting decisions, and both quantitative and qualitative measures of downstream value over time. This adaptable structure aims to support long-term usage and contextual relevance across the pharmaceutical industry.

“By taking measurable decisions and actions informed by the authentic voice of those living with a condition, pharmaceutical research and development organizations, regulators, and policymakers can ensure new treatments meet patients’ needs, to improve their quality of life and deliver the outcomes that matter to them,” the authors emphasised.

The proposed Patient Engagement Impact Measurement (PEIM) framework comprises three key components: Inputs, Outputs, and Value. A project-specific example highlighted patient-focused clinical trial development in chronic myeloid leukaemia (CML).

Inputs included forming an advisory board of CML patient advocates, who reviewed participation and screening criteria for Phase III clinical trials in both adults and children, providing valuable input throughout the process.

Outputs encompassed changes such as the removal of the requirement for a bone marrow aspiration test from the trial screening process; instead, results from patients’ previous tests were logged.

Value was reflected in improved experiences for patients and caregivers during the trial, as well as a relatively easier recruitment process, according to qualitative feedback from investigators. Remarkably, Phase III enrollment was completed ten months ahead of schedule.

“As the industry makes great strides in working ‘with’ patients, not only ‘for’ patients, wider adoption of impact measurement, such as through this co-created framework, will demonstrably improve provision and access to treatments with effects that really matter to patients,” Klein et al concluded.

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