A Workshop on Systematically Collecting, Integrating, and Measuring the Impact of Patient Engagement Across Research

PURPOSE: ISPOR's patient-centered special interest group defines 'patient engagement in research' as “the active, meaningful, and collaborative interaction between patients and researchers across all stages of the research process, where research decision-making is guided by patients’ contributions as partners, recognizing their specific experiences, values, and expertise.” In the past, this definition was largely aspirational. This workshop will introduce participants to real-world examples of how global pharmaceutical and research organizations operationalize meaningful patient engagement and measure its' impact across research portfolios. Topics covered include strategies for collecting high-quality patient experience data (PED), partnering with cross-functional teams to integrate PED across key decisions, and measuring the impact of patient engagement across drug and core outcome set development.

DESCRIPTION: Elisabeth Oehrlein will moderate the session, introduce key terminology, and engage the audience to consider how the processes, tools, and lessons learned from the case studies can apply to their work. Beyza Klein will describe the Novartis approach of collaborating with the patient community; building a thorough understanding of patients' life experiences to guide decision-making; and establishing standardized methods to measure the impact of patient engagement efforts throughout a product's lifecycle. She will outline how pharmaceutical companies and other stakeholders can contribute to creating a patient-centered health ecosystem by adopting systematic approaches to measure and communicate the outcomes of their patient engagement initiatives. Stacie Cavallaro will describe how BioMarin adapted the National Health Council's Patient Experience Mapping Toolkit to standardize a process for capturing and utilizing patient and caregiver insights starting early in clinical development. Jennifer Bright will describe the International Consortium for Health Outcomes Measurement’s (ICHOM) approach to engaging patient representatives to identify the outcomes that matter most to patients, develop core outcome sets, and drive adoption and reporting of these measures worldwide to drive value-based healthcare.