A head-hunter has written to me this morning – as they have to many others no doubt – asking whether I know of any good ‘research’ candidates to Chair a panel looking at research into patient and family experience.
My first thought? To ask why the client thinks it’s vital for someone with research experience to hold this position. Would it not be better to have a Chair who has practical insight into the patient experience and their agenda?
A few weeks ago I spoke at an event where the theme was ‘science revolution.’ But, of course, no one really wanted revolution. Rather they all proposed ways which wouldn’t unsettle a sleeping baby. They certainly didn’t challenge the rules of the game or the rule makers.
If revolution really was in the air then perhaps we’d adopt the politics of 1789 and systematically unseat the incumbent Chairs of all health research funding committees and replace them with patients and carers. But that would be an equally unpalatable prospect wouldn’t it?
For the issue is not about replacing one dogma with another but about getting the right person for the job. And this means breaking with convention and opening up more opportunities up to the lay person.
Good Chairs can be ‘cracking’ scientists. But ‘cracking’ scientists do not automatically make good Chairs.
Yes, you want your Chair to be credible with the committee members and have relevant knowledge. But the Chair must also have their eye on other things: bringing independence and objectivity to the discussion, ensuring a collegiate spirit exists in the room, arbitrating when disputes arrive, making sure everyone has a say, setting the committee’s expectations with its secretariat and how it needs to be supported. As Voltaire put it:
Judge of a man by his questions rather than by his answers.
And when so many patients and the public have careers and work or life experience that would make them excellent Chairs – much to the almost comic amazement of colleagues who think patients do nothing else but be a patient – we should be looking to make the most of their skills rather than blindly closing the door.
Over the past year I have seen a number of committees work with patients and the public in the Chair, fulfilling roles as Co-Chairs, or having patient Chairs for specific meetings. Shock, horror, it works!
Let’s hope more organisations follow suit.
(If you are interested in the art of Chairing then I am going to shamelessly recommend a book by a good friend of mine and PPI advocate – Sophie Petit-Zeman: ‘How to be an Even Better Chair: Sensible Advice About Chairing in the Charity, Not-for-Profit and Public Sectors.’ But you might need to source it through your library as it is out of print and second-hand copies go for £39.99 on Amazon!!!)
Simon Denegri's Lay Review 
When patients with ME expressed concern about the way the PACE trial was conducted they were accused of harassment and a campaign was run by the SMC, QMUL to further stigmatize a group of patients.
More recently academics in the US have looked at the trial and have been shocked. David Tuller an academic and journalist wrote an excellent series of blogs on the subject. http://www.virology.ws/2015/10/21/trial-by-error-i/
Complaints were made to the MRC but their head of governance supported the PIs in switching outcomes in the trial protocol even though the trial was open label. More recently a patient has used the FoI to try to get data to understand what the effect of the protocol switching was and QMUL has spent at least 200k + vat trying to keep anonymised data out of the hands of patients. The MRC’s head of governance (who defended outcome switching) appeared in a information tribunal supporting the suppression of the proper results.
The outcome switching was so bad that the definition of recovery was below the trial entry criteria so a patient could enter the trial, get worse and be counted as recovered.
The UK medical community was quite or condemned patients.
But the tribunal ruled that the data should be released. We still don’t know if QMUL will appeal but today they have released some results based on the the original outcome definitions. They show the results were vastly exaggerated.
So patients are doing a much better job of governance than those who are paid to do so. Or at least trying to but are under attack for daring to point out flaws.
The NIHR funded further research based on these misleading results.
Patients are opposed to the treatments proposed because many have tried them and as a result had serious relapses. So what is also very concerning is a further trial (funded by the NIHR) trying these approaches on children (MAGENTA). The consent forms fail to warn children that many patients report relapses and deterioration instead children are told that the treatments are safe.
So another failure of good trial governance.
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Dear Adrian, I really appreciate your reply. I’d like to look into this a bit more. Have you made any further representations about MAGENTA? Best wishes, Simon
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