Have charities really put the brakes on public involvement in research?

I was pulled-over by the police on the M25 on Sunday night.  Unbeknown to me, my car brake lights had failed so that they were permanently on.  Quite apart from blinding any traffic on my tail, an unwitting driver could easily have mis-read my intentions with who knows what consequences.  Thankfully that didn’t happen.  And by the way, thanks to the AA man who repaired them.

A few weeks ago, the Association of Medical Research Charities (AMRC) published an excellent report of the five-year audit they have done of the Association’s 125 members and their peer review practices.  You can download it from their website here. It shows that UK medical research charities are as committed as ever to independent external review of their science.  And it is this sector-wide commitment to peer review – to almost the exclusion of all other factors – which locks them into the prevailing consensus on the pursuit of science in the UK.  For better of for worse.

But there is a statistic in the report that troubles.  This shows that the number of charities that use lay people in peer review (49%) is very similar in 2011/12 to that (53%) of the previous previous audit completed in 2006/7.  Have charities really become static on public involvement or am I just not seeing through the static?

Now, we have to be a bit careful here because I know from colleagues that the story behind the numbers today is quite different to what it was then.  Five years ago charities tended to simply stick lay people on panels, count this as involvement and forget about them.  Nowadays – as AMRC’s report and other documents it has produced shows – the role and contribution of lay people is better facilitated and richer as a result, from separate panels feeding into peer review, to developing research strategy not to mention contributing to research dissemination.  AMRC’s science communication awards also bear witness to this.

But I am not going to let my beloved sector off the hook completely: there are other indicators that paint charities in a disappointing light when it comes to public involvement.  For, even with the silver lining portrayed above, the figures in successive AMRC peer review audits indicate that around half of medical research charities do not involve the public in the way they decide how to apportion donor or supporter money to research.  Go figure.

The recent INVOLVE/National Research Ethics Service (NRES) report on public involvement in grant applications also showed that, of those funded by charities, about one third included no public involvement and about another third had ‘ticked’ various public involvement activities as part of their study but were unable to confirm what this was in free text.  In my view charities should be at the top of the leader board, way ahead of the current front-runner in the INVOLVE/NRES study which is the National Institute for Health Research (NIHR).

I also know from my work with NIHR’s clinical research networks – and local research networks in particular – that charities are certainly ready and eager to fund clinical trials or studies.  But they can be less engaged in the equally vital task of securing patient and public involvement in trials, and in recruiting patients when trials open.

This whole area deserves deeper inquiry to find out what the true story is.  But my hunch is that a core of  charities, enlightened about their relationship with their public, have simply got even better at the task of involvement.  Too many, however, continue to tiptoe nervously around the subject.  Others just refuse to play ball for one uncharitable reason or another.  This does science and the public a disservice.

With ever greater scrutiny of their role in society, charities must constantly demonstrate and not just advertise their unique ‘copyright’ over public support for research in this country.  By involving their beneficiaries they can perform an important pseudo-regulatory role in ensuring that the way in which science is conducted – as well as what it chooses to focus on – ‘protects and promotes the public interest.’  Their supporters prove time and time again to be the best at getting the message across to fellow patients, clinicans and researchers.  But most of all public involvement is a fundamental part of the charity genome: it is the impulse that urges us forward to question, to innovate, to never accept the consensus.

Don’t get me wrong, I think the charity sector is one of our greatest strengths in UK health research.  That doesn’t mean though that on some things I don’t think we can do better, much better.

But perhaps I just can’t see past those faulty brake lights.

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