In this session, speakers will unpack the notion of “patient engagement” in pediatric neurodisability research and explore its potential benefits and challenges. Attendees will come away from the session with a fuller understanding of some of the issues surrounding efforts to engage patients and their families meaningfully in pediatric research. Speakers will share their experiences and reflections, encouraging dialogue and thoughtful analysis of the current state of patient engagement initiatives.
Opening comments will be presented by Jennifer Johannesen. Drawing on her experiences of parenting a child with multiple undiagnosed physical and neurodisabilities, Jennifer will present a parent’s perspective on patient engagement in research, and will discuss what she considers would be helpful to children and families. Jennifer strongly advocates for brain-related research projects to extend beyond current confines, to include consideration of a person’s social environment, family context and other realms typically assigned to the social sciences.
Moderator: Donna Thomson
Speakers: Jennifer Johannesen, Evdokia Anagnostou
Responders: Franco Carnevale, Julie Drury