Patient and public involvement in a study of multimedia clinical trial information for children, young people and families
Rebecca Sheridan, Jennifer Preston, Simon Stones, Sammy Ainsworth, Danielle Horton Taylor, Robyn Challinor, Sophie Ainsworth, Jacqueline Martin‐Kerry, Louca‐Mai Brady, Peter Knapp
Abstract
There is increasing recognition of the need to involve the public in health research, but accounts of how best to achieve this are scarce. This article describes public involvement in the TRials Engagement in Children and Adolescents (TRECA) study, which is developing and evaluating multimedia information resources to inform children, young people and their familes about clinical trials. A dedicated group of young people with long-term health conditions and their parents met regularly throughout the study; further involvement was sought when specific input was required. Review of formal impact records and informal discussions highlighted how public involvement can positively influence research practice and the people involved. By detailing the methods of involvement used, this work also provides guidance for successfully implementing public involvement in research, and highlights challenges that should be considered in future research projects.