In medical research PPI seems to be the TLA (ThreeLetterAcronym) of the moment. Everything calls for PPI, quite often the rationale is unclear, the methods are confused, the problems are undefined and the desired outcome is not thought through. So what is PPI? Payment Protection Insurance? Proton Pump Inhibitors? At least with the last of these medical research has given an answer. As someone who takes a PPI and who has made a PPI claim I don’t like to be referred to as a PPI !
The PPI I am complaining about is the term ‘Public & Patient Involvement’. There is a whole PPI industry appearing. NHS and academic staff posts have PPI in their titles, departments have PPI in their name, and there is a rash of journal articles professing the best ways of incorporating PPI in research. Go back 10 years and PPI was barely visible, go back 15 and it cannot be seen at all. Where has it come from?
Patient involvement has a long and worthy history back into the 1980s. The HIV/AIDS campaigners were brought by the MRC into the debate about research. They became involved in the programme and the detail of actual studies. Mental health campaigners, arthritis charities and researchers in other diseases began making similar steps. Then in the mid-1990s cancer research began catching up.
The creation of NCRI and NCRN in the early 2000s gave a great impetus to ‘patient involvement’ with the creation of what was called the Consumer Liaison Group, a nationally managed group of involved patients (now the Consumer Forum). I won’t go into why cancer patients (and carers) were called consumers, it’s a long story. NCRN met every performance target the Department of Health set for it, years early in some cases. Patients were a core part of that success, working on research study groups, contributing to central activities and local network study implementation. By 2005 NCRN had given Professor Sally Davies (then Director of Research at DH) the evidence she needed to support the launch of NIHR.
Patient involvement was one of the core principles and the initial six disease research networks developed plans to meet that ambition. By 2008 some of those networks were finding it problematic to build research patient groups using the cancer model and alternative, more broadly based, involvement was appropriate. Thus PPI was born.
The problem is that PPI has become a convenient corporate term, bland and increasingly mis-used. There are issues and circumstances in research where ‘patient involvement’ matters and where ‘public involvement’ should be excluded. Researchers want access to the ‘lived experience’ of a disease, treatment or condition. By conflating patient and public into one term organisations fail to recognise that these situations exist, the uniqueness of ‘patient involvement’ is neither acknowledged nor properly enabled. I was disappointed that the National Standards for Involvement published in 2019 do not recognise this. NIHR seems to have lost sight of ‘patient involvement’ and I believe that this is a huge mistake.
Patient involvement in research is not about creating an intervention but about empowering the research process in new ways, asking it to test itself, develop relevance and integrate fresh approaches. The effect is subtle. You don’t get momentous and memorable interactions, you get naïve questions and surprising revelations, you get cultural challenges which require adjustment and are sometimes hard to admit. Because of this subtlety you cannot measure ‘impact’, a frequent demand made of PPI managers and systems – the search for bland corporate-ness knows no boundaries.
As a rare cancer patient I have spent many days/hours in the last 20 years being a patient advocate. I have found myself far too often representing a disease situation very different from my own. I have been better at this than a member of the public could have been, simply because I am a patient I can get researchers attention. But because I do not have a specific ‘lived experience’ I may be less-than-best and I know it. Defining, recognising and supporting a robust mechanism for developing meaningful involvement of patients where it is relevant to have the ‘lived experience’, for even the rarest diseases, would support research and benefit patients.
I think it is telling that in medical research in Europe there is little time for ‘public involvement’. I know healthcare systems differ so comparisons are fraught with problems and it is easy to argue about underlying principles but researchers are very clear, if the face offered to them is not a patient they are cautious, even reluctant, to consider involvement.
So my plea is to send PPI to the wastebin of redundant terminology, to recognise ‘patient involvement’ and ‘public involvement’ as distinct and separate activities – albeit sometimes attracting the same people and using the same administrative support. Talk about the people involved as ‘patient partners’ or ‘patient researchers’, or ‘public representatives’.
Do not refer to them as PPI – that is demeaning to them and reveals the ignorance and laziness of the user of the term.