A reference guide for patient and public involvement contributors. How the ECMC Network PPI group developed a resource for patients and the public


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Nikki Hayward1,Ruth Boyd2,Helen Bulbeck3,Clare Dickinson4,Jayne Doran5,Karen Turner6,Elspeth Banks7,Kate Cleary8,Laura Rooney9,Ernesto Rogarto10,Hannah Brown11
1Oxford University Hospitals NHS Trust, Oxford, UK,2Northern Ireland Cancer Trials Centre, Belfast, UK,3Brainstrust, Cowes, UK,4The Christie NHS Foundation Trust, Manchester, UK,5Birmingham Experimental Cancer Medicine Centre (ECMC), Birmingham, UK,6University of Birmingham, Birmingham, UK,7Glasgow Experimental Cancer Medicine Centre (ECMC), Glasgow, UK,8Wales Cancer Research Centre, Cardiff, UK,9University of Glasgow, Glasgow, UK,10Leeds Cancer Trials Centre, Leeds, UK,11Experimental Cancer Medicine Centre (ECMC), Cancer Research UK, London, UK

Abstract

Background

Patient and public involvement is now embedded into many aspects of cancer research, including gaining thoughts and opinions on the earliest design phases, through to the provision of lay perspectives on ethics committees, trial steering committees and service provision.

When the ECMC network patient and public involvement group was originally established, they identified a gap in training for lay people involved in early phase cancer research. To address this gap, the group decided to produce a handbook which would support people affected by cancer who were taking part in PPI activities. 

Method

The handbook evolved over a period of two years, through face to face meetings of the working group, teleconferences and virtual review of content by the wider group. The handbook was produced by a combination of lay members and professionals. Reviews of content by PPI committees across the UK were sought to provide the widest possible perspective prior to deciding on the final version.

Results

To collate a condensed version of many aspects of early phase research, and ensure the information could be understood by lay people was challenging and relied on the input and knowledge of a combination of professionals and people affected by cancer.

Feedback from the wider PPI groups gave us clearer direction for the final version, especially with regards to layout. The results of the combined efforts of the ECMC PPI working group, the handbook will be published later this year.

Conclusion

Patients and public who get involved with activities to support cancer research are expected to give feedback on complicated proposals which use scientific language, with no previous background in the topic. Providing a handbook for those involved in PPI activity will aid understanding of the projects being reviewed and enable lay people to give feedback with confidence.