Zombies and Unicorns in Patient & Public Involvement

I won a prize! I never win a prize!

Last week I won the prize for best PPI paper at the #hsrn14 conference in Nottingham (1). It’s given me a nudge to publish this post, which I’ve had loitering around for a while but not been sure about, as it probably falls from ‘discussion’ into ‘Sarah having a Right Rant about Things’. It’s about certain ideas/arguments in PPI, and whether they can be classed as zombies or unicorns. (I came across these terms as used to describe health care policies in this post by Prof Alan Maynard).

Zombies are ideas that are obviously dead but they just won’t stay in the ground – you can try to slay them with reasoned argument but they always seem to reanimate. Brains are not safe from them. Unicorns are lovely ideas that you never actually see in the wild. They sound wonderful, but everyone suspects they’re a myth. Attempts to verify claimed sightings end up with the rather less appealing discovery of a horse that’s had a cone stuck on its head.

So, in no particular order, here are some zombie and unicorn PPI ideas that I hear a lot:

1. ZOMBIE: PPI groups aren’t representative (so we shouldn’t listen to them).

This gets wheeled out a lot in a “aHA!” way, as if the person saying it has just exploded the very idea of PPI right in front of my eyes. I just think it’s daft. I suspect there’s partly a problem here of researchers struggling to get out of the mindset that patients are participants. In a research study, it’s very important that your participants are representative of your target population, but I’m not sure how you’re supposed to find a PPI partner who can ‘represent’ an entire population. At a recent talk by the Cochrane Collaboration, the speaker mentioned they actually now discourage use of the term “PPI rep” for someone doing PPI, as it’s unhelpful to give the impression that the person is somehow meant to represent an entire group.

I think it’s absolutely true that there is an issue of diversity in PPI (Peter Beresford has written about the problems of reaching often excluded groups) but I don’t think this justifies ignoring PPI input off the bat. I’d argue that if you’re interested in the experiential knowledge someone brings, then their experience is what is most relevant, rather than who they are. I also must admit it I find it slightly bizarre when groups of white middle class academics say they don’t want to include the views of white middle class PPI partners because they’re not ‘representative’ enough.

You have to admire the optimism.

You have to admire the optimism.

2. UNICORN: PPI makes research better.

This one is, I’m sure, more controversial than the first, as I know lots of people who have argued that PPI makes research better. However, I think the evidence base for this is pretty slim. Crucially though, I think the problem here is an inadequacy in how we measure and report PPI activities ie. we don’t. This means we have don’t have evidence that PPI makes research better, but nor do I think we have evidence it has no impact. We just don’t have any evidence.

I’d argue that resolving this strongly relies on all of us deciding what ‘better’ means. Does it mean the research is more reflective of patient priorities? Does it mean it’s more ethical? That the study will be more likely to recruit to target? That the findings will be adopted more quickly? Or is research which invites members of the public to be involved inherently “better”, because it’s more transparent or democratic? (In full disclosure – I’m actually in favour of the last one.)

 3. ZOMBIE: PPI groups tend to be ‘experts’ (so we shouldn’t listen to them).

I’ve always found this one a complete pain. The argument tends to go that members of the public don’t know enough about research to make significant contributions, so we can’t involve them. Except in those cases where they know too much about research, so they’re not “research naive” anymore and so, guess what, we can’t involve them. As far as I can gather, the argument rests on the idea that PPI partners with lots of expertise in research or PPI somehow lose the ingredient that makes them special, and they don’t bring their raw experience to the table anymore. In my own experience, people who get involved in research with a particular passion (such as my colleague May, who collaborates with me on carers research) don’t lose a molecule of it. I’ve also often found so-called “expert” PPI partners are still more sensitive to the needs and concerns of the everyday patient with no knowledge of research than researchers themselves tend to be. Finally, I think this dramatically undervalues the work of people with extensive experience of involvement, who can help not only by contributing on specific projects but who can help us with the broader strategies of PPI itself. The idea that these people are “Professional PPI” and so of less value is mind boggling. Most worryingly, I think it speaks to an implicit stereotype some researchers have that if you’re clued up and skilled up, you can’t represent ‘real’ patients anymore, because obviously real patients are basically idiots.

 4. UNICORN: Funding bodies are committed to PPI.

Almost every funding body I know has some statement about how important it is to involve patients and members of the public in research. But money talks, and in my experience PPI is still drastically under-funded. There is often little or no money available to sustain PPI contacts between projects, and no guidance (as far as I’m aware) on what percentage of a research budget should be committed to PPI. PPI partners themselves often report being under-funded (for example, payment for attending a 2 hour meeting might neglect the 2 hours spent prepping for that meeting or the time spent on phone calls with the research team to plan for it) and they struggle to get money for additional activities such as training. PPI now has to be included on grant applications, but until it also becomes a meaningful part of final evaluations (in the way for example you are expected to reach recruitment targets and have to justify why you didn’t) I don’t think this ensures genuine PPI activity will be undertaken. I think one simple way to do this would be to ask for evidence that the money allotted to PPI was spent as promised, as I’ve known a few projects end up with almost all their PPI budget remaining because they didn’t actually do any of the PPI work.

I suppose one argument would be that until No. 2 is demonstrated, it’s not ethical to commit lots of money from the public purse to PPI. However, I would argue that until we do adequately support PPI, we’ll never accurately be able to tell if it does make research better. At the moment there is a self-defeating cycle, where PPI is poorly funded and conducted, and consequently it seems to have little impact on research. Adequate funding is needed to give PPI a fair shot at making an impact; otherwise it’s set up to fail.

Right – rant over!

There are of course genuine issues for debate in PPI, things like assessing the training needs of people who take up PPI roles (and whether there needs to be a stratification of ‘naïve’ and ‘professional’ PPI ), examining the potential negative impact on contributors, both PPI partners and researchers, and debating what it is that makes ‘meaningful’ PPI and how it can be delivered. I want to emphasise that I’m absolutely not averse to discussion or debate about PPI and very open to criticism of the endeavour – just please, please don’t tell me PPI groups “ just aren’t representative”…

Notes

1. The prize was a pineapple (2).

2. I have no idea.

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