Science historian and Guardian science blogger, Vanessa Heggie (@HPS_Vanessa) has written a fascinating piece about how AIDS activists among others changed the way we run clinical trials and persuaded researchers to adopt new methods.
That’s certainly the history lesson passed down to me as Chair of INVOLVE by previous members. They will tell you that, before we ever talked about definitions, standards, impact or, rather bizarrely ‘what is a patient?’ it was protest and a sense of injustice that drove patients to clamour for change and hammer on closed doors. They will also tell you that our very own Medical Research Council (MRC) was one of the organisations with doors firmly closed and drawbridge raised.
This year, the MRC has been celebrating its 100th birthday. Like every centenarian it will have got a telegram from the Queen saying:
“I am so pleased to know that you are celebrating your one hundredth birthday this year. I send my congratulations and best wishes to you on such a special occasion.”
If I were President I would add a ‘PS:’ But you need to do more public involvement if you want another telegram plus some birthday money next time.
The MRC is a curious organisation when it comes to public involvement. I am in touch with a great many MRC colleagues whose commitment to it is palpable. As I go around the country, patient and public friends are often fulsome in their praise of MRC trials, how they have been run and how they were treated as participants. In October, the MRC Clinical Trials Unit, – a world-class centre of research excellence – held a workshop to discuss how to strengthen public involvement in clinical trials in the future. It is important that we support and encourage such activities in order for them to grow.
But, step closer to its HQ, and things become that bit more hazy. In fact, befuddlement might be the best word to describe its corporate response. Imagine people coughing and shuffling papers on their desk when asked a difficult question and you have it about right. Fact is, they just don’t get public involvement or perhaps even ‘the public.’
The disjointedness between this corporate persona and its more streetwise operational self hit home to me when I viewed their new 2014-2019 strategy ‘Research changes lives.’
This document was published last week. The second of its strategic aims is entitled ‘Research to people’ and this has three objectives including one on ‘Engagement: To enhance engagement and communication with our scientists and partners, policy-makers and parliamentarians, and the public.’ What that means to the cynical part of me is that the MRC remains wedded to the notion of talking ‘to,’ if not ‘at,’ the public rather than taking a more courageous step to involve them in its decision-making.
The MRC has struggled with the notion that people who are not scientists might have something useful to contribute for as long as I care to remember. When I became chief executive at the Association of Medical Research Charities (AMRC) and met its then chief executive, Professor Colin Blakemore, it was clear that engagement was the thing. That meant raising public awareness and understanding. No more, and no less. Professor Blakemore did awareness raising – and does it – very well indeed and he should be applauded for it. It has never really moved from this position since.
I did experience a glimmer of hope some time ago when it was going through a revamp of its committees. But, alas, I was to be disappointed. Its Ethics, regulation and public involvement committee contains many ‘good eggs’ who I admire greatly. But they do not constitute a patient and public forum who could inform and shape the MRC’s decisions and work based upon people’s lived experience of research – whether as participants or interested members of the public.
The thing is, like many old institutions with cultures stronger than their constitutions, the MRC is a good egg that simply likes its ‘good eggs.’ It is attracted to status and titles. And that means neither you nor I, I suspect. So while its doors may be ajar compared to two decades ago, they are also wooden and heavy and cumbersome. That means they are likely to spring back and do you and I an injury at any moment.
That’s a shame because it overshadows the excellent public involvement work being hatched ‘out there’ by MRC staff in their respective field. They’re the ‘good eggs’ in my book.