文章基本信息

标题：The role of the public in developing interventions: a reflection and critique of a cancer clinical trials unit’s model
本地全文：下载
作者：Jim Fitzgibbon ; Jessica Baillie ; Natalie Simon 等
期刊名称：Patient Preference and Adherence
印刷版ISSN：1177-889X
电子版ISSN：1177-889X
出版年度：2014
卷号：8
页码：1527-1535
DOI：10.2147/PPA.S66734
出版社：Dove Medical Press Ltd
摘要：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.
关键词：public involvement; lay representative; clinical trials unit