I don’t think we make this clear…
What involvement does is bring new knowledge and a different perspective to research – it’s information that’s ‘new’ to researchers and a world-view that’s different to their own. When you look in detail at how involvement makes a difference, it often fills a gap in researchers’ knowledge, or corrects an assumption they’ve made, or identifies a problem they haven’t anticipated. It reveals what the researchers don’t know – the unexpected.
At the beginning of any project, the researchers don’t know what they don’t know – and don’t find out until they’ve involved patients. How would they know, for example, that the wording of their recruitment letter was putting people off, until a patient read it and told them?
I think this is why some researchers haven’t understood what involvement will do for them. They don’t even realise they’ve got a problem, so don’t perceive a need for the ‘involvement solution’. We try to persuade researchers to do involvement by telling them about the benefits for research – maybe it would be more effective to help them realise there are things they don’t know that patients do.