Walking The Walk - Embedding Patient and Public Involvement in the culture of the MRC CTU at UCL

Annabelle South, Kate Sturgeon, Danielle Horton Taylor, & Richard Stephens, on behalf of the MRC CTU at UCL PPI Group

Introduction

In 2012 the MRC CTU at UCL adopted a policy that all our clinical studies should have patient and public involvement. To ensure that the involvement was relevant and useful rather than tokenistic, we have worked to embed high quality PPI in the culture of the Unit. This poster describes our processes to achieve this, and includes the results of a recent survey of trial staff assessing our progress.

Approach to embedding PPI in the Unit culture

Our approach to embedding PPI in the culture of the Unit is summarised in the diagram below. Action took place at strategic, programme and individual study levels.

In this short video, Richard Stephens, a Patient Representative on our PPI Group talks about how we have embedded PPI at a strategic level. Strategic level activities include a PPI Group to oversee PPI across the Unit (made up of staff and patient representatives); the appointment of a PPI Coordinator within the unit, and incorporating patient representatives on our Protocol Review Committee, our Data Sharing Group, and our Quality Management Advisory Group (QMAG).

In this short video, Kate Sturgeon, our PPI Coordinator, discusses how we have embedded PPI at a programmatic level, and also the PPI capacity strengthening activities we have carried out. At a programme level, we seek patient and public input through existing community organisations, setting up PPI panels that cover multiple trials, and having patient representation on trial steering committees that cover multiple trials. There is a programme of capacity strengthening activities for Unit staff and patient/public contributors, including co-developed and co-delivered training, guidance and tools (some available https://www.mrcctu.ucl.ac.uk/patients-public/patient-public-involvement-resources/papers-guidance-templates/)

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In this short video, Annabelle South, who chairs our PPI Group, talks about the PPI that takes place in individual studies. Our Standard Operating Procedure (SOP) specifies that each trial should have a PPI plan, documenting how PPI will be carried out at each stage of the study. Individual trials involve patients and the public through membership of formal committees, one-off discussion groups, standing advisory groups and participant involvement activities. We have written a paper describing our experiences of participant involvement. This paper explores how PPI was done in 10 of our studies.

Results of a survey evaluating how we are doing

We periodically survey our trial teams to find out how we are doing at PPI across the Unit. In the latest survey, staff from 25/39 studies responded. Headline results include:

• Our PPI training and Standard Operating Procedure improved understanding of PPI
• 10/20 respondents said PPI had a lot of impact on the success and quality of the trial, 3/20 said a little, 6/20 unsure, 1/20 no impact
• 14/25 said SOP had caused them to rethink/improve trial PPI
• 14/25 had completed a PPI plan, 13/14 said the plan was helpful

Conclusions

Embedding PPI in the culture of a clinical trials unit, through action at strategic, programmatic and study level, may improve the success and quality of trials.

It also encourages application of good practice consistently across many studies