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Patient-Led Special Initiatives
Session Chair(s)
Jennifer Farmer, MS
Chief Executive Officer
Friedreich's Ataxia Research Alliance (FARA), United States
In this session, we will share the experiences of practitioners in a wide range of healthcare, research, and patient settings.
Learning Objective : Identify how patient involvement and engagement can inform protocol design, improve clinical trial experiences, and help shape policy and practice; Describe case studies of fit-for-purpose patient engagement; Explain the need for and components of a framework/toolkit that can be used to help organizations facilitate patient engagement.
Speaker(s)
Coping and Hoping: Patient-Led Initiatives To Improve Cancer Patient Experiences in the UK
Richard Stephens, MA
National Cancer Research Institute (NCRI), United Kingdom
Past Chair, Consumer Forum
New Insights on Pediatric Clinical Trials: Parent and Child Perspectives
Annick De Bruin, MBA
CISCRP, United States
Chief Research and Insights Officer, Research Services
Developing an Enterprise-Wide Patient Engagement Framework
Valerie Powell, MS
CorEvitas, LLC, United States
Chief Patient Officer, CorEvitas and EVP, Patient Experience
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