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The role of the public in developing interventions: a reflection and critique of a cancer clinical trials unit’s model

Authors Fitzgibbon J, Baillie J, Simon N, Nelson A

Received 17 June 2014

Accepted for publication 7 August 2014

Published 4 November 2014 Volume 2014:8 Pages 1527—1535

DOI https://doi.org/10.2147/PPA.S66734

Checked for plagiarism Yes

Review by Single-blind

Peer reviewer comments 4

Editor who approved publication: Dr Johnny Chen

Jim Fitzgibbon,1 Jessica Baillie,1 Natalie Simon,2 Annmarie Nelson1

1Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, Wales; 2Involving People, National Institute for Social Care and Health Research Clinical Research Centre, Cardiff, Wales


Abstract: The importance of involving lay representatives in research is well-recognized but is not consistently meaningfully practiced or reported. Although the positive outcomes of lay representative involvement can include more relevant research questions and outcomes, challenges are also apparent, including tokenistic involvement by research teams. A Cancer Research UK-funded and National Cancer Research Institute-registered cancer clinical trials unit in the United Kingdom established a program of work to promote genuine and consistent involvement of lay representatives (or “research partners”) as part of the research team. Furthermore, a volunteer was employed to recruit and coordinate the research partners in partnership with a national agency for public involvement in health and social care research in Wales. This article reports on the development of this project and how it will be formally evaluated. Recommendations for involving lay representatives are also posed.

Keywords: public involvement, lay representative, clinical trials unit

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