“If it wasn’t there you’d know it wasn’t there, but how do you prove it?” Patient and public views on assessing the impact of PPI in research

2014 Conference

Abstract; Evidence that patient and public involvement (PPI) makes a difference remains largely anecdotal and there are mounting calls for robust, critical evaluation. But how can we assess the impact of PPI, and should we assess it at all?

In this paper we explore and discuss the views of 38 patients, carers and members of the public regarding the impact of their involvement in research, whether and how it should be assessed. This was part of a wider interview study exploring their views and experiences of involvement in medical research. Five lay contributors were involved from the study outset and advised on sampling, recruitment, interview guide and themes emerging from the analysis.

Many participants were convinced that their involvement made a difference to research, particularly if they were involved from an early stage. Assessing the impact was considered important, however, it was agreed that finding meaningful ways to measure impact was difficult. Participants felt that impact was largely subjective and often difficult to isolate. They made various suggestions including:

• negative as well as positive impacts should be captured;
• tools to measure impact must be sensitive to the complexity of PPI;
• success rates with regard to funding, ethics committee approval and recruitment of participants could be measured;
• patients and the public should be involved in assessing the impact of PPI.

We present the full results and encourage audience members to discuss and debate the issues raised by participants. The findings will inform a new study aiming to assess the impact of PPI.