Evidence Library

Title: The Value of Patient and Public Involvement in Trial Design and Development
Author: Gasson S; Bliss J; Jamal-Hanjani M; Krebs M; Swanton C; Wilcox M
Date Published: 2015
Reference: Clinical Oncology (Royal College of Radiologists) 27, 12, 747-9
Are service users or carers authors: Yes

Abstract: The Independent Cancer Patients' Voice (ICPV; www.independentcancerpatientsvoice.org.uk) is a patient advocate group bringing the views and experience of those affected by cancer to the cancer research community. The ICPV believes that clinical research is improved by patients being partners with healthcare professionals, rather than passive recipients of healthcare. Patient and public involvement (PPI) once seemed to be imposed on researchers, a box that needed ticking in order for a funding bid to be successful or for a trial to get the approval of an ethics committee. One or two patients might have been asked to give their approval for a study proposal, enabling researchers to say that patients had been involved in the research process. Over time, the ICPV found that some researchers began to recognise the value of quality PPI in the development of their research and started to involve patient groups at all stages of their research. The ICPV was founded in 2009 as an independent patient advocate group. Through education, mentoring and support, the ICPV has expanded and nurtured its membership and gained the respect and trust of many researchers. Having been involved in the development of over 100 trials, ICPV members now represent lay people/patients on many trial management and steering groups. The ICPV has collaborated with researchers to deliver presentations at UK and international conferences. Workshops, trials focus groups and educational events have been hosted by academic centres across the UK. Trial proposals, protocols and other documents are reviewed by ICPV members at the invitation of researchers via a closed google group.

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Categories: health
Identifying topics, prioritising and commissioning
Designing research
Managing research
Undertaking research
Analysing and interpreting
Writing up and disseminating
journal article
Implementation and change

Date Entered: 2018/09/19

Date Edited: 2018/09/19

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