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The International Association for the Study of Pain

Bringing Everyone Together to Elevate Research: Developing the BETTER Patient and Parent Advisory Panel

Panel Discussion

Abstract Description

Alexandra Neville will discuss the development of the BETTER (Bringing Everyone Together To Elevate Research) Panel. This patient and parent advisory board aims to include patients and their caregivers as partners in the design and implementation of research projects to improve the care of youth with chronic musculoskeletal pain.  The BETTER Panel is currently comprised of eight patient and three parent partners. The BETTER Panel is guided by the patient engagement principles set forth by the patient-centered outcomes research institute (PCORI). Patient and parent partners are engaged in a variety of opportunities depending on their interests and preferred level of involvement, including learning about the research process and recent findings, providing feedback on study materials and designs, leading aspects of the BETTER advisory panel, and engaging with the community. To date, activities have included co-designing a brief CBT intervention for youth with chronic pain, providing consultation on how to tailor a chronic pain intervention to adolescents, and co-designing research questions and study materials. Dr. Neville will discuss how the BETTER Panel was structured to meet patient and parent needs and foster mutually beneficial and meaningful working relationships between patient partners and the research team. 

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