I happily acknowledge the experience and thought about this issue which others have expressed but I do not want us to lose sight of the uniqueness of patient involvement. I care little about public involvement, I want to see patient involvement where it matters in areas where research can improve the quality of treatment and care. The differences with public involvement are more than semantics, it is about ‘lived experience’.
I also acknowledge that not everyone likes the term patient and that differing disease contexts use slightly different language. That is why the phrase ‘lived experience’ is so important. It includes carers, especially in those diseases and contexts where patient communication is problematic, where children are concerned, and in diseases where survival is poor.
In much of clinical research unconditional patient involvement is necessary. The lived experience, viewpoint and thinking of patients and carers cannot be provided by anyone else, can influence study design and provides important insights throughout the life of a clinical trial.
Whether any single person can be representative of ‘lived experience’ is a matter for discussion within each context. It is important and should be thought through by patients and researchers together prior to starting work on the study. It is of little use recruiting me to comment on a bone sarcoma study which impacts on teenagers, I am a soft tissue sarcoma patient and my teenage years are distant past.
It is worth recalling that when the UKCRN was formed back in 2005 (it is the precursor to NIHR CRN CC) it had an Associate Director for Patient Involvement. Public involvement was a sideline issue.
So let me be vocal and unequivocal, patient involvement represented by the ‘lived experience’ is not a sub-set of public involvement and should never be gratuitously lumped into it for academic or organisational convenience.