Send ‘PPI’ to the Wastebin

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.

Winds Beyond Our Control

A change of Health Secretary (not before time) and a fresh set of messages about reducing the pandemic constraints on life should be welcome developments. The fact they aren’t deserves careful examination.

This pandemic has taken many twists and turns, usually with government unprepared (or at best under-prepared) for the development, and often responding far too late to the data which they claimed was driving their decision-making. The unwillingness to empower local action and to centralise efforts failed, a signal which seems to be ignored.

We now have the situation where infections are climbing once again, with a doubling time of around a week, most of those infected are young people, and government decisions seem to be based on the fact that vaccination response is so good among adults, especially in the older generations, that normality can return. Whatever that normality turns out to be.

There are unknowns. What is going to happen to the hospital admission rate as infections rise? That is already testing some NHS Trusts. The issue of deaths is disregarded, it seems they are going to remain low, but no-one can be certain. A rising incidence in Long-Covid among younger people is a threat that is brushed aside. Potential mass-spreader events are now permitted – acceptable risk?  The UK’s border policy seems more robust than it was, but inaction allowed the Delta variant to be introduced from India and to take hold. Could that happen again?

The dominant political stance is that as so few people (as a percentage of the population) now get seriously affected and vaccination has reduced that to a lowest ever position, we can let go of all constraints on life. The economic impact of the first waves must be overcome and our ‘freedoms’ returned, to be sacredly preserved.

I am worried.

First, because the NHS has been destroyed. It is still there in name but you cannot see a GP (you may get a phone call), your highest risk for getting infected is to visit a hospital, NHS staff are exhausted and stressed, the backlog of unmet need is at its highest level ever, and political shenanigans resulting from the pandemic have tainted a valued ethic.

Second, consequent deaths are a growing issue. Cancer death rates will rise because of delayed diagnosis and treatment, similarly for other conditions. Disability rates in the population will rise because of untreated conditions, or conditions which become too difficult to treat.

Third, inaction on social care means that the NHS will become an old people’s home. It is too much like one already. Government promises to address social care have sounded hollow for a long time but now the growth in the elderly population is about to burst as the post-war baby-boom generation approach 80.

These are structural issues which need a combination of leadership, strong values, integrity, political collaboration, imagination and resources – all of which seem to be in short supply.

But consider that the pandemic is not over yet. The impact on young people is a great concern but perhaps the greater issue is the unknown behaviour of the virus as it mutates. All these other issues could be a minor distraction if a variant emerges which escapes the effect of vaccines. I can respect the cautious optimism of the scientists that they can address variants. Their caution is common sense, qualities absent from politics.

At its worst we could be heading into a healthcare crisis beyond imagination. If, somehow, we can grasp the challenges and start to have good luck with the virus, the damage can be addressed.  It’s a set of fine balances but personally I have no confidence that we can be anything other than blown through the storm by winds beyond our control.