One of the most common questions that we are asked by people (particularly clinicians) with whom we discuss the Kidney Transplant PSP is:
Does involving patients actually make any difference?
Intuitively, we think (and hope) that it should. Patients can provide an insight into what is important to them, or what might stop them from consenting to a clinical trial from a perspective that clinicians may not be able to see.
However, there is surprisingly little published evidence in support of patient involvement in research. Perhaps the best existing study examining the impact of patient involvement is this systematic review from Jo Brett and colleagues at the University of Warwick. They identified 66 studies reporting impacts from a range of involvements including research agenda setting (such as this PSP), development of patient-friendly information sources and surveys, trial recruitment, patient-centered data analysis/interpretation and study results dissemination. Whilst the quality of evidence is limited, they did find a number of positive reported impacts, particularly in the areas of trial recruitment and information provision. Interestingly, they also found a number of negative impacts, such as the costs/time involved, compromise of traditionally-accepted best research practice, and tokenistic attitudes to patient involvement.
The steering group for the Kidney Transplant PSP have been approached by a team led by Jennie Popay from Lancaster University and Rosamund Snow from the Nuffield Department of Primary Care Health Sciences, who are interested methods for assessing the impact of public involvement in research. They have developed an assessment framework to help researchers develop a strategy for assessing the impact that public and patient involvement have on research, and we will be using this alongside the Kidney Transplant PSP to truly assess, for the first time, the value of the JLA PSP process.