Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Researchers,  Heather M. Young, Sheridan Miyamoto, Stuart Henderson, Margaret Hitchcock, Sarina Fazio, Yajarayma Tang-Feldman,aimed to describe the context and processes used to engage patients effectively. This paper discusses engagement activities, roles and responsibilities, value of a Patient Advisory Board (PAB), and lessons learned. Data include program notes, research team reflections, Patient Centered Outcomes Research Institute (PCORI) reporting, and an advisor survey. Lessons learned were the value of time, the importance of building trust, and the benefits of diverse perspectives. The approach to meaningful engagement of patient advisors in research has the potential to enhance the relevance and usefulness of research for improving lives.

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