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Patient and public involvement in a study of multimedia clinical trial information for children, young people and families
Authors
S Ainsworth
Sammy Ainsworth
+8 more
Louca-Mai Brady
Robyn Challinor
Danielle Horton-Taylor
Peter Raymond Knapp
Jacqueline Maree Martin-Kerry
Jennifer Preston
Rebecca Sheridan
Simon Stones
Publication date
1 February 2020
Publisher
'Institute of Education Press'
Doi
Cite
Abstract
© 2020 Sheridan, Preston, Stones, Ainsworth, Taylor, Challinor, Ainsworth, Martin-Kerry, Brady and Knapp. This is an Open Access article distributed under the terms of the Creative Commons Attribution Licence (CC BY) 4.0. https://creativecommons.org/licenses/by/4.0/.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.Peer reviewe
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