The forum aims to provide insight into the diverse roles patients and caregivers have and provides examples of these roles in patient-centered research. Case studies will be drawn from health preference and patient-reported outcome (PRO) research to enrich the discussion.

Siu Hing Lo will provide a broad overview of the roles patients and caregivers have as engaged research partners versus research participants in patient-centered research. She will then discuss how the form of patient/caregiver engagement could differ depending on the study objectives, existing evidence, practical considerations, and the intended use of the study findings. She will also highlight similarities and differences in patient/caregiver roles between health preference and PRO studies.

Holly Peay will discuss case studies in which patients and caregivers participated in a community engaged process for the development, interpretation, and dissemination of qualitative and quantitative HPR research. She will summarize barriers and facilitators to engagement and approaches to match engagement to stated preference research objectives.

Ryan Fischer will discuss his experience collaborating with academic and industry partners for advocacy-led patient preference and experience studies, and how advocacy organizations use the results generated from such studies in their strategic planning, advocacy, education, and research funding.

Fraser Bocell will discuss the roles of patients and the use of patient engagement in selecting, modifying, and adapting meaningful PRO instruments, from a regulator’s perspective.

Speakers will use polling questions to engage the audience in discussion.

This forum is a collaboration presented by the Health Preference Research and the Patient-Centered Special Interest Groups.