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

Fitzgibbon, Jim, Baillie, Jessica ORCID: https://orcid.org/0000-0002-4592-7286, Simon, Natalie and Nelson, Annmarie ORCID: https://orcid.org/0000-0002-6075-8425 2014. The role of the public in developing interventions: a reflection and critique of a cancer clinical trials unit's model. Patient Preference and Adherence 8 , pp. 1527-1535. 10.2147/PPA.S66734

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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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Healthcare Sciences Medicine
Subjects:	R Medicine > R Medicine (General)
Publisher:	Dove Medical Press
ISSN:	1177-889X
Date of Acceptance:	7 August 2014
Last Modified:	15 Sep 2024 14:08
URI:	https://orca.cardiff.ac.uk/id/eprint/79172

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