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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.
Sometimes it is the lot of the blogger to feel like the producer of ‘Have I Got News For You.’ One’s research can taken you to all sorts of places you didn’t know existed. Then again it can also turn up some gems.
This morning I blogged about the WHO report on medicine priorities and its call for better tools for evaluating public involvement.
Then, this evening I stumbled across this short article from ‘Optometry Today.’ It reports the findings of research conducted at Moorfields Hospital and published in the British Journal of Ophthalmology about the benefits of public involvement as seen from a patient perspective.
A range of benefits are reported by patients, it says, including increased patient satisfaction and confidence in their care. Health professionals also report educational benefits.
Haven’t been able to lay my hand on the original paper yet…
I make no apology for being a little bit obsessed by plain English summaries of research this week. Events have conspired to make it this way.
So, what did NIHR do when faced late last year with rising concern among academics, researchers, patients and the public about the poor quality of lay summaries? It commissioned INVOLVE – its national advisory group on advancing public involvement in research – to inquire into the matter and make recommendations. That’s what.
INVOLVE’s report – the outcome of that inquiry produced with the excellent TwoCan Associates – appears on-line today. It makes sensible proposals for the structure, content of, and guidance given to researchers on, what is says should be called ‘summaries’ (not abstracts). Also on how to improve adherence within organisations. For instance, INVOLVE says that production of a high quality plain English summary should be an NIHR principle and condition of funding.
I am very proud that INVOLVE was asked to lead this work. There is much to do to make sure its recommendations get taken up by NIHR but also by others funders. But I do believe that – given the evidence gathering exercise it did in the first instance – it has succeeded in establishing a good starting point for NIHR. I hope that other funders will also follow its lead.
From this month onwards, while discussions continue within NIHR about the report, we will not be resting on our laurels. We will be adding more content and helpful advice to a special part of the INVOLVE website. So watch this space.
If you are at a loose end between now and the end of June, then this exhibition at the Street Gallery of University College Hospital looks well worth the visit.
Award winning photographer Clare Parks joined forces with researchers and patients to explore their feelings about clinical research in photographs. The images are really quite thought-provoking. I’m certainly going to pop along.
I thought the following interviews might be of general interest. Both are with recently appointed science leaders. Both, among other things, major on the need for greater collaboration in research.
Times Higher Educational Supplement (THES) interviews the new President of the Academy of Medical Sciences, Sir John Tooke.
Sir John chaired the discussion panel I was on last week about the health research environment. I found him very engaged and interested in the discussion around patient and public priorities for research, more than his interview suggests; a sound successor to Sir John Bell in my view.
Also the new EU Chief Scientist, Anne Glover, is interviewed by PublicServiceEurope.com. She covers an awful lot of ground and there’s a lot about evidence-based policy-making, championing science etc etc.
On the good side it is refreshing to hear from a science leader who seems genuinely interested in the issue of diversity and equality. I was also interested in her take on GM foods that ‘emotion’ had got the better of ‘evidence’ in the debate. I wouldn’t disagree with that. But I would hazard a suggestion that this points to the need for a different strategy completely by science than simply ‘parking the evidence’ again as she puts it.
‘Evidence-led emotion perhaps?’