The Involve conference was interesting, but raised a number of concerns. An awful lot of the research seems to me to be the equivalent of navel-gazing - research into how much patient and public involvement there is in research, for example. OK, we need to know that there is PPI involvement, but I'd rather research grants went to projects that helped patients and carers directly.
I'm also concerned about the small group of people from which subjects are drawn. Indeed I overheard a conversation in the dinner-queue that went along the lines of "We need some subjects for our next project". "Oh, well just ask the people in our partnership group". It reminds me of the time in the 1950s when most psychology theories were based on studies of psychology undergraduates in America, because that was a captive subject pool for psychology researchers.
We do need to widen both public and patient involvement in research, and participation in trials. The question is "how?"
John
