CR: “As a lay coordinator of a growing group of research users involved in a variety of primary care research projects across a clinical trials unit, I was very aware of the varied approaches to PPI being undertaken both regionally and nationally. So I was very interested in being involved in a project looking at PPI within a group of projects across one funder, looking particularly at the costs and benefits of PPI to the patients and the researchers, as not all costs are quantifiable and those that are, are not routinely recorded. Yet in my experience many patients and researchers go above and beyond what is asked of them, because they sincerely believe that patient involvement is an absolute must for good rigorous primary care research that can go on to be implemented to improve patients’ daily care. I was also keen to be involved in looking at the results and how they could be used to inform PPI practice for the future.|
However, it was disappointing that no opportunities for observations of meetings were forthcoming and quite worrying that no details of patients involved in the studies were available, so no real patient perspective could be obtained of what the costs and benefits to the patients were throughout the studies. So this highlights for me a gap in the literature where more research needs to be undertaken to fully understand the costs and benefits for the patients involved in primary care research.
However I was impressed with the further specific recommendations on systems and processes compiled to fully integrate PPI into any future SPCR projects, which showed a real commitment from the SPCR to learn from the study findings.”
AH: “I have enjoyed being a co-applicant on this study. I feel that I have been involved in all areas of the study. I think that the study is essential as it shows the inconsistency of reporting PPI.
I feel very disappointed about the response rate for the questionnaire, as no patient data was collected due to researchers being unwilling or unable to do this. This proves that there is a large gap here that needs to be addressed. I have also been surprised that in a lot of cases there were no plans for PPI, and for many researchers they held insufficient if any information. On the positive side - this paper will highlight areas for improvement and hopefully that will help to change attitudes and perspectives in the future.”