One of the central debates in patient and public involvement (PPI) is about how best to mix the activities of those seeking to understand the causes of and cures for ill health with the vast and varied experiences of those who have been or are unwell. Indeed, it is tackling this challenge within the (vast and varied) ideologies and beliefs that suffuse all these people’s worlds that occupies much of my time in Oxford.
When a message pinged into my inbox recently with a link to an article by Sense about Science Director Tracey Brown that asked “Are the public really sick of experts?”, it gave me more than a slight sense of unease.
The thrust of the piece is that we will be in dangerous territory if we embrace calls to reject evidence. So far so sensible. It was hung on a comment made by the former Secretary of State for Justice (and Education before that) Michael Gove, that “people in this country have had enough of experts” and Tracey wrote that the appeal of a post-truth society “has allegedly sprung into being because politicians who made stuff up polled well in the EU referendum.”
Whatever your views on Brexit, Tracey’s article raises interesting questions about the nature of experts, and led me to wonder whether too much emphasis on them might sound the death knell for PPI? Take for example our work to see whether PPI in trials makes them better able to recruit. We don’t know yet, but the basic premise of this, and similar studies elsewhere, is that PPI in trial design makes them more appealing to potential participants. It’s a simple idea: if you plan trials in partnership with the sort of folk you hope may join them, they are likely to be more acceptable than if a bunch of experts decide what they think will work.
So, back to Tracey’s article, where she refers to a recent Institute for Government poll revealing that the public are still very keen on experts. Might this mean that efforts to bring patients and the public into the medical research fold will fail because, as a society, we still favour a more traditional “Doctor knows best” model?
Well, not exactly. 85% of those polled did indeed want government (the focus of the poll) to “make decisions based on objective evidence.” And I happily welcome evidence that we want evidence. But the report also makes a rather different claim, as it goes on to say “People are also more convinced than ever that citizens need to be involved in difficult decisions – 86% say politicians should consult local people who will be affected by a decision.”
While this report is about how governments should govern, it seems reasonable to assume that the desire it illustrates for evidence and experience to be brought together stretches across other areas. And this is now starting to sound less like the death knell for PPI in research and more like an evidence-based blueprint for it.
Indeed, one of the greatest challenges for the PPI community is how to ensure we hear – and heed – the diverse voices of the patients research seeks to serve, rather than leaving it all to researchers. But alongside this, we have to be mindful that these researchers have their story too: after all, we’d leave plumbing to the plumbers. Good PPI has to be about partnership, not about titles and territory.
Indeed, Rand Europe recently undertook a review for Sense about Science and the Nuffield Foundation called ‘Social change and public engagement with policy and evidence’ (pdf) where they comment: “…the relationship between understanding of the issues, desire for influence, feelings of influence, and active involvement is complex…70% of people were happy for the government to take the lead on climate issues, while only 20% were happy abdicating responsibility for health and welfare….Similarly, the report noted that in some cases, feeling that the public are able to influence decisions should they so wish may in some cases be preferred over formal procedures for input in decision-making. The report conceptualised this as an ‘adult-to-adult’ relationship – one characterised by straight-talking conversation in which the public are presented with different sides of an argument, allowed to come to their own conclusions, and able to influence subsequent decisions.”
Our PPI working group supports Healthtalk which “provides free, reliable information about health issues, by sharing people’s real-life experiences.” Healthtalk has recently collected a comprehensive set of views from patients, the public and researchers about PPI, work that features on the home page of the part of NIHR that manages contracts such as for this BRC.
From this work, the Rand study above and indeed – though one has to dig a little deep to find it – Tracey’s article about experts, the signs all point the same way: to the importance of open-mindedness about what makes an expert and what constitutes expertise. Some days it feels too hard to meld it all, but thinking about the patients who tell me that research doesn’t meet their needs, or reflecting on conversations with researchers frustrated that patients “Don’t know what’s good for them” reminds me how much it matters to keep trying. And I must apologise: when I read the word “expert” in Tracey’s article, I had forgotten just how many different sorts there are.