Collaboratively assessing the impact of patient and public involvement in research
Session type: Poster / e-Poster / Silent Theatre session
The Royal Marsden and Institute of Cancer Research has a well-established group of Patient and Public (PPI) Colleagues contributing to the planning and conduct of clinical trials and other research studies. The group is known as the RM Patient and Carer Research Review Panel. The panel reviews protocols for patient acceptability, helps to develop patient documentation and also works in partnership with researchers in co-production. It is thought that PPI contributions enhance research design, clarity and accessibility for patients. However the impact of PPI in research can often be intangible and difficult to demonstrate. This project aimed to develop and implement a tool that would demonstrate the impact of PPI.
A researcher feedback tool was developed and refined in conjunction with PPI colleagues. The tool was used over a six month data collection period and sent to all researchers who had accessed the PPI service. Data was recorded and presented as frequencies and percentages. The results were utilised to further refine the tool.
Over the six month period 35 Research projects were submitted to the panel for PPI. 24 Researcher feedback tools were returned. 81% of the overall PPI changes were to Patient Information sheets with the PPI resulting in changes to format, style and language. 19% of the projects were in the protocol development stage or pre submission stage and of these 50% had changes to some aspect of the trial design. The narrative text analysis on the tool was positive with statements that PPI enhanced both the research and the researcher’s perspective.
PPI impact remains challenging. A broader approach to data collection to include more qualitative capture of impact may help to show the breadth of impact. The tool is being further refined and rolled out in a collaborative project with the Experimental Cancer Medicine Centres.