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      Patient and public involvement in a study of multimedia clinical trial information for children, young people and families

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          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.

          Author and article information

          Journal
          72010652
          Research for All
          UCL IOE Press
          2399-8121
          01 February 2020
          : 4
          : 1
          : 47-65
          Article
          2399-8121(20200201)4:1L.47;1- s5.phd /ioep/rfa/2020/00000004/00000001/art00005
          10.18546/RFA.04.1.05
          5f61efb7-11e2-4556-831b-587a0e89b359
          Copyright @ 2020
          History
          Categories
          Articles

          Assessment, Evaluation & Research methods,Education & Public policy,Educational research & Statistics
          FAMILIES,CHILDREN,PPI,YOUNG PEOPLE,PUBLIC INVOLVEMENT

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