There have been some thoughtful blogs recently on the subject of PPI in research from Simon Denegri (headless chickens) and Jim Elliot (mis-selling PPI), and an excellent editorial in the BMJ on evaluating PPI in research. It may be time to put forward some of my thoughts about what is not happening and perhaps should be.
Patient and Public Involvement is too generic, the term is too imprecise, to allow it to be other than a mantra for ignorant management to follow. It is difficult to implement unless those charged with actually doing it really understand what it involves. As a result Jim’s dislike of the PPI abbreviation is widely shared by cognoscenti and those organisations which thoughtlessly perceive it as a route forward find themselves in Simon’s headless poultry farm. To cap it all after twenty years the research community still questions its value.
So if it is too generic how do we break it down? The immediate thing to do is to separate ‘patient’ and ‘public’.
Being an involved patient means bringing the “lived experience” of a disease or treatment to the table where it is relevant to have that experience available and expressed. In research this need is easily identifiable and a general public involvement is not required. For some roles you need a patient, nothing else works. Simple. Hmmm …
When you go beyond research into the more general arena of healthcare the public voice is important but the involvement of patients is also a need. What that means is that a large overall part of generic PPI activity is actually about public involvement and the involvement of patients where a research focus is not present. However having patients involved is a management mantra (“look how clever we are, we are patient centred”) so there are contradictions and political expectations to be met.
The National Standards published last year call it all ‘public involvement’. That distorts it. Research has specific needs . Sadly these Standards point towards lowest common denominator corporate behaviour, the NIHR ignored my consultation suggestion of having a standard about senior management being actively engaged (over and above signing it off). That is what Simon is now calling for. Evaluation plays no real part in the Standards and that need is well described in the BMJ editorial.
So we have management mis-understanding, inappropriate pressures on front-line managers, lack of terminological precision, lack of ambition, conflciting purpose, no meaningful feedback about performance. Yet, we want more of it. Confused?
The general healthcare need for public involvement is about engaging the community, whether geographical or a community of interest which the organisation serves. Recruiting, training and supporting public members is different from the processes for recruiting patients to be involved in research. If there is a specific need for involving patients outside research (eg developing a new therapy suite) these can usually be easily handled because there is a local community involved.
My personal wish is to see the research issues sorted out. PPI in research is focussed on the “lived experience”, first-hand experience of a disease or treatment, and importantly patients are sought for what they can bring as individuals, not just because they belong to a defined community. They can be harder to find and, for example, ensuring that a rarer disease is represented can be all but impossible. Inevitably this means that there are roles and occasions where a more generic experience is valid but putting in a member of the public solely because they are a member of the public is not appropriate.
We must manage these separate needs separately even when all these requirements may co-exist in one organisation. It must be recognised that they are different and should be managed in different ways.
I am sure that understanding this difference and recognising separate approaches according to need could help Simon’s chickens grow into fine oven-ready birds. Clear ideas about evaluation would probably help. As for a replacement acronym for PPI, assuming we cannot have an acronym-free environment, I give up. Identifying these different purposes will perhaps give focus to evaluation efforts, allowing us to develop involvement with a clear idea of how value can be recognised in all its different purposes.
Footnote: I recognise that there are some situations where the only way of tapping into the “lived experience” is through those who care for or lived with a patient. In these instances the carer’s “lived experience” is valued just as the patient’s would be.