Back from the INVOLVE conference with a mix of enthusiasm and despair. The enthusiasm comes from spending time with people who take as a given that (complex tho the arguments are) patients make useful partners in planning and doing research. Despair, from a growing sense that getting folk to grasp what patient involvement is, is a truly Herculean challenge.
One of the conference sessions is the “soap box” where delegates, selected at random, talk for 2 minutes on any subject they wish. Thomas Kabir and Diana Rose, foremost experts in mental health patient and public involvement (PPI), used their slot to plead for a greater understanding of the difference between involvement and participation.
One of the criticisms sometimes levelled at the PPI world (from those within and outside it) – is that we get bogged down too often with terminology at the expense of getting things done. Fair cop, but I do think there’s an argument for saying that until we are able to be clear about what we mean, we can’t expect others to be clear about what we do.
A dear friend who knows I work in PPI assiduously sends me links to things about the value of trials, about patient experience, about medical advances. This is all great, but none of it’s involvement. Or rather, it is involvement (of course it is – you don’t get much more “involved” than being ill and joining a trial), but it’s not what those of us who work in it, mean by it.
And all this leads me to wonder whether we might be spared these interminable terminology discussions if we’d come up with a better word for what we do in the first place. Far be it from me to suggest overturning the PPI apple cart, but I find the word “partnership” frequently springs to my lips when I’m trying to describe involvement.
I heard a lot about “co-production” at INVOLVE – and I fear I’ll make enemies by saying this, but I’ve trawled the net to see what it means and it seems to encompass all that is good about PPI without using the word that most obviously applies to it: partnership.
For a lot of patients a lot of the time, participation (in trials and studies) is something they want to do, and they see this as part of the involvement spectrum. But for others (or the same folk at different times), involvement in the nuts and bolts of research planning and doing is what they want, and it can lead to things taking unexpected turns. Indeed, to non-participation, to studies being changed or abandoned altogether. And we need to be open to this if we are serious about making research responsive to what patients want.
I doubt very much that the PPI machine will suddenly swap what I see as the misnomer of “involvement” for the clarity of “partnership,” in part because we’ve been using the former for so long. But I’ll leave you with a quote I read in Metro on the way home from Birmingham: the best time to plant a tree is 20 years ago, the second best time is today.