Academic interest in patient involvement has been dominated recently by evaluation. We at last have a growing recognition that involvement is not an intervention, like sticking a needle in, but an influence over process which acts subtly and sometimes covertly to effect change over a period of time. There is rarely a single identifiable point of ‘impact’, the change may be subtle and only evident through reporting by those involved, researchers, managers, funders and patients themselves.
So what is the next challenge for our researchers? There certainly seems to be plenty of content, the challenge is finding the questions to resolve. Lets try a list of unanswered questions, not worded yet as proper research questions and to be fair, some might not make it that far:
- How do we draw the lines between patient and public in involvement?
- What is “lived experience” for the purpose of defining patient involvement?
- How do we ensure we get the right people for the right role?
- How do we report involvement as a key element of research?
- If we sack an involved patient how do we report that?
- What questions should we ask researchers to help find the value of involvement?
- How should we ask researchers those questions?
- How can we remunerate involved patients without creating conflicts of interest?
- Are there ethical issues we should address to empower more effective involvement?
- Is effective involvement pragmatic, or driven by philosophical and cultural change?
That’s ten to start with. I could go on.
One of the challenges is getting these questions, and others like them, aired. In this world of evidence based medicine research proposals are usually supported by a literature search from which the prospective funders can identify that the research question is a valid one. Thus research builds up in an organic manner, with a traceable provenance. In patient involvement there is little evidence, as yet, in the literature with the result that provenance is largely impossible to identify. One of the challenges for researchers who wish to raise questions like these, even as a commentary or discussion point for a journal, is that there is no evidence to point to that the question is important. The editor will not publish. It is a chicken and egg situation.
I am suggesting something which steps outside the usual ‘evidence based medicine’ criteria. As usual, remember that this is a patient making the suggestion, I have only one interest – getting questions answered so that patient involvement improves.
My appeal is that those journals which are happy to report or commentate on patient involvement, few but growing in number, encourage such new questions to be aired and debated relying only on the evidence that there is a question which informed people are discussing. The aim is that researcher groups will pick up on these ideas and have a reference base, however small, to work with when they seek funding for a full research project.