Session (CTI)

How patient-centered is health preference research (HPR) and how can we make it more patient-centric? The ISPOR Patient-Centered SIG invites all stakeholders (i.e., patient-centered, health preference, HEOR) to this session to understand recent trends in patient-centricity in HPR and learn about strategies to improve patient-centricity in HPR. Patient-centricity and engagement are key to ensuring that health outcomes research adequately reflects patient perspectives and priorities. Patient Preference Information (PPI) can complement other aspects of patient experience data (PED) such as patient-reported outcomes by measuring patient willingness to trade different aspects of an intervention. Patient engagement involves patients as research partners to ensure patient-centricity of the research itself. Patient-centricity and patient engagement are important for all aspects of PED, including PPI. This workshop will cover the current state of the field for patient centricity in PPI and demonstrate how to engage patients at all stages of HPR research. Jessica Roydhouse will present findings from an HPR review study and share key conclusions on patient-centricity of HPR studies, including patient engagement in study design and HPR attribute development. Siu Hing Lo will share insights from a recent review on the current status of reporting of PED to inform patient preference study attribute selection and other study design aspects, and patient engagement in patient health preference studies. Angie Botto-van Bemden will share her experience as a patient partner helping communities capture patient preference information most useful for decision-making. Ryan Fischer will share his experiences and lessons learnt as a patient advocacy representative researching patient and caregiver preferences for gene therapy in Duchenne muscular dystrophy. Interactive examples and audience engagement through real-time polling and discussion will enable participants to critically assess and evaluate ways to incorporate the Patient Voice and engage patients in HPR that is meaningful to patients.