Give us the tools…. – A toolkit for PPI designed by, with and for PPI people

2014 Conference

Abstract: The cancer Consumer Liaison Group (CLG) is a national network of cancer patients and carers, and is an embedded part of cancer research structures in the UK.

The 13-year history of effective cancer patient and public involvement (PPI) by members of the CLG has challenged the terms “professional” and “lay”, and has prompted new models based upon the concepts of co-production and partnership working.

The core members of the CLG are expected not only to be “expert patients” but to offer a professional contribution to their committee or group. We review regularly the support we need to ensure that our individual and collective experience and expertise continues to have impact on and add value to cancer research.

During 2013 CLG members designed and piloted our own Toolkit to assist us in delivering the role of PPI representative in an effective manner, blending advice and guidance from external sources with our own tried-and-tested consumer-to-consumer tips and suggestions.

The Toolkit covers topics from trial design and development to dissemination and application of the findings. Themes include appraisal of trial applications for funding (relevance and recruitment), national portfolio management, and navigating the external resources that support the role of PPI rep.

The Toolkit is free to access. Designed by PPI reps for PPI reps in cancer, it has many aspects that are useful for anyone working at in any disease or condition at local or national level, and we hope to explore those aspects with our colleagues in other diseases to produce a generic version.