Evidence Library

Title: Making patient and public involvement in cancer and palliative research a reality: academic support is vital for success
Author: Collins, K., Boote, J., Ardron, D., Gath, J., Green, T. and Ahmedzai, S. on behalf of the North Trent Cancer Research Network Consumer Research Panel (NTCRN CRP)
Date Published: 2014
Reference: BMJ Supportive & Palliative Care doi:10.1136/bmjspcare-2014-000750 [Epub ahead of print]
Are service users or carers authors: Yes

Abstract: This paper describes a model of patient and public involvement (PPI) in research – the North Trent Cancer Research Network Consumer Research Panel (NTCRN CRP) – which has 38 members. It was set up 12 years ago to provide a mechanism for patients/carers to influence the research agenda and to contribute to the research process from the outset. The role of the Panel has since expanded. Currently, Panel members take part in public conferences and support engagement, help manage the Network’s research portfolio, are involved in individual studies and contribute to overall research governance. Over the years the challenges have been: • lack of time and resources • tensions between different stakeholders and their views of the value of involvement • lack of clarity of the role of Panel members at some research meetings • lack of clarity about how best to involve patients/carers The authors conclude that part of the NTCRN CRP’s success can be attributed to the fact that it has been supported by two local universities since the beginning and has been validated and nurtured by senior level researchers.

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Categories: health
nature and extent of public involvement in research
reflecting on public involvement in research
journal article

Date Entered: 2014/10/28

Date Edited: 2014/10/28

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