First, the positive.
Last week the Medical Research Council (MRC) announced that Professor Andrew Morris had been appointed Director of the new UK health and biomedical informatics research institute.
Why should this matter to you and I? Because this is the second occasion in less than six months when a senior research leader in the UK has been appointed by the public as well as fellow scientists. The other appointment is Professor Bart Strooper of the new Dementia Research Institute which is to be based at UCL. By all accounts the interviews with the public have been the most challenging part of the process for candidates. World-class public involvement in action!
I am feeling less positive about the new Life Sciences Strategy which is due to be published as part of the Government’s industrial strategy (by all accounts, at the end of April).
I mean, who knows what’s happening with it? The stock response I get from most people when asked is ‘I wish I knew.’ Or similar. Which suggests things are not as open, transparent and inclusive as when the previous Life Sciences Strategy was written in 2011. Either that or my memory of those days is failing me. Or, more likely, I’m simply outside the ‘circle of trust’ convened by the Government’s chosen author for the strategy, Sir John Bell.
By most accounts – and notwithstanding the occasional workshop – I hear that it’s a strategy being written by the life sciences industry for the life sciences industry. Which suggests a conclusion not unlike the Accelerated Access Review published before Christmas (and which has been subsumed within the Life Sciences Strategy process I believe). A review where the patient voice was swept aside from the main report in a rather nonchivalrous manner.
So, the first issue I have is with the way in which it is possibly being done. The second issue is whether we will see the link with patients strengthened as it should be.
What was good about the 2011 Strategy is the way that it was framed so that every patient had a role in making it happen. David Cameron said, with reference to patient data, that he wanted ‘every willing patient to be a research patient.’ The UK Clinical Trials Gateway (UKCTG) was re-launched so that every citizen could have access to information about opportunities to take part in research.
It would be a counterproductive if not harmful if the 2017 Strategy took a step back from this view of the world where we are trying to make the best use of all our assets – citizens included, to break the connection between the life sciences and patients and the public which we have done so much in the UK to forge over the last decade. I thought the academic and commentator, Jonathan Grant, put it well in the Times Higher a few weeks ago when he said:
This is not to argue that we should not be supporting curiosity-driven discovery research, but rather to suggest that we should learn to listen to what society wants from research. If not, research and research funding could be caught up in the anti-establishment populism that has characterised the past few years. This may lead to a shift in research priorities and portfolios, but that should be welcomed as it will strengthen the implicit contract between researchers, taxpayers and donors. But to listen well will require a move from a model of supplying “ideas” generated by researchers to one where we are more actively listening to our supporters’ “demand” for solutions.
Taking Grant’s cue, this is my third issue: will the Life Sciences Strategy reflect what the nation needs or the preoccupations of dominant voices who, with the best intentions, find it difficult to see beyond blue skies.
Indeed, my experience is that this is one of those episodes in science policy – others being the Cooksey report, the credit crunch etc. – when my basic science colleagues rise up like the knights in ‘The Weirdstone of Brisingamen: A Tale of Alderley’ to protect the nation at its time of crisis. Or rather ‘curiosity-driven discovery research.’ To suggest otherwise, to even hint that this might not be the whole answer to our troubles, is seen as treason. The Tower beckons. And I’m not talking about the one next to the Thames.It’s a shame. Just because we question does not mean we are not also its greatest supporters.
One day a few weeks ago I spent the afternoon talking with service users, local voluntary groups and researchers about partnership; partnerships to improve health and wellbeing for the most needy in our society. They are passionate about science in all its forms. But their everyday experience is of helping people who are beyond the help of anything that the cleverest person can do to a molecule. It is a societal need that is desperate and growing. All this in a stuffy room in the shadows of some of our greatest research institutions and shiniest research facilities. But then we are often most blind to that which lies in our shadow.
Perhaps we should put the draft Life Sciences Strategy to the test in front of a public panel.