One of things that crops up all the time in the patient involvement world is debate about who to involve.
Who are the “right” patients? Do we want “them” new to research, untainted by the ways of “our” world, or do “we” want “them” fully trained and comfortable with the jargon? (The quotation marks will get annoying so I’ll stop using them now “you” know “I” have a problem with these terms).
This came to my mind for two reasons recently. First because there’s a member of our PAIR group who couldn’t be more part of the medical world, but I thought he might have sought us out (he asked to be an observer and we said “please join us”) because of his experiences as a patient.
So I asked him – somewhat hesitantly – which list he should be on (managing mailing lists haunts me at 4am). To which he replied, “I’ve been enough of a patient recently to feel very angry that so little attention has been paid by researchers to common but very draining symptoms, so I guess I might qualify as a true hybrid!”
I suspect this speaks volumes for many of us, or them. I have sat in meetings over the years where the need to get a patient or carer on the group has been the subject of fraught debate. And wondered “Shall I speak up about my experience as patient/carer, so we can move on?”
The second reason I was mulling this over was that Jo, our PPI impact fellow had the good idea of assessing what those of us on her small steering committee, comprised of professionals and patients, think our roles are. It’s part of our internal PPI impact assessment but Jo sent us all the questionnaire rather than singling out the two (official) patients.
One question asked was, “Are there any other aspects of your life experience that might be relevant to this group/project?”
To which I replied, “I always find the professional/patient/carer divide a challenging one – I have been a patient, carer, “medical” professional – but also worked (and still do) in journalism and communications and housework and cooking and gardening and sport and being a sibling, a wife, a neighbour etc etc etc.
“It is of course important to have people who are not embedded in the PPI world to be the voice of the real world but it is also true that others such as myself can and do bring all that they are (good/bad and neutral) to a project like this – and that is a longer list than I can write here.”
This (cumbersomely) echoes our “true hybrid” above. And please don’t misunderstand me: we are hugely privileged to have patients involved with our work who bring insights into a depth and breadth of ill health/healthcare that I have never known, and I also really mean it about needing to “have people who are not embedded in the PPI world to be the voice of the real world”.
It matters very much that that we hear them, and find ways to ensure we can heed them – no mean feat if views are wide-ranging and resources are limited. But we also need to get better at recognising the complexity and richness that we mingle with: “who do you think you are?” is a question for us all, whichever side of the PPI fence we sit.