There are many forms of patient participation (also referred to as patient engagement, patient involvement, patient partnership, PPI, PPEI) and each method can bring something valuable. But these methods are not all the same, and we have to look carefully what a specific PPI setup actually can and cannot provide.
That question (what type of ‘patient input’ a specific PPI set up provides) should be answered not just by the research team organising the ‘patient input’, but also by the patients who are involved (and maybe even by patients who were NOT involved!). Their answers are likely to differ.
The bar for calling something ‘patient participation’ can be remarkably low.
If every form of consultation is labelled ‘patient participation’, the term stretches until it covers everything and distinguishes nothing.
