Calls for more health research funding on this or that condition is the one issue where I have seen sympathy within Government decrease over the years: in inverse proportion to the growing number of campaigns by charities, patient groups and others calling for more cash.
Lung cancer and mental health are two conditions where the case for more research funds has been made vocally by leading charities in the last few weeks. Few will not feel sympathy for the causes or the arguments made – Ministers and officials included I suspect – and charities and patient groups have every right to make them. Indeed, some might argue that any self-respecting charity would not be doing its job if it didn’t call for more cash. It’s just what they do isn’t it?
But in my experience, and for a variety of reasons, such campaigns now struggle to gain much momentum within Westminster and Whitehall. And it has less to do with austerity and finite budgets than one thinks.
As a Minister looks through her/his Ministerial red box late at night and comes across details of the latest campaign a number of considerations come into view: Is it really about the money – what are the other solutions? Is the field developed enough to spend more money even if it had it? How can we be sure the research funded will be the very best? Are there not other areas of research we fund which are relevant but they are just not badged with the condition name? If we give into this demand won’t it open us up to many more such calls? Is it just a fundraising ploy?
Charities and patient groups might view these questions as a rejection of their argument. But perhaps they should actually see them as an invitation from Government to enter into a more constructive dialogue which is less about the money and more about the ‘How.’ ‘We hear you,’ is the message from Government ‘but let’s stop this shadow boxing over money we don’t have. Let’s talk about how we might grow research in this area together.’ Where this is happening – dementia, mental health for example – I think the signs are promising even if the jury may still be out.
At the same time, Government could be doing more to engage and help people understand how research funding is spent and how such decisions are made. For a number of years the UK Clinical Research Collaboration has published a Health Research Analysis of how yours and my taxes and donations are spent by the main public funders and a large number of medical research charities. The last one was published in 2014 and you can find all the reports and some tools to analyse it on a new Health Research Classification System website here.
It’s a meritorious site, but a site for nerds nonetheless. It feels like a missed chance to engage the public in how research money is spent and involve them in future decisions. Like the City of Pittsburgh in the United States which has just launched a range of tools on its website to help people understand and think about how they might apportion tax receipts on services. Or the Dutch Government which has involved people in setting a national research agenda (thanks to Imran Khan at Wellcome Trust for Tweeting that particular report) which they then feel ownership for and will hopefully not be seen to be dominated by specific diseases or conditions.
Such is the culture of the UK health research system that, in spite of greater transparency about funding and where it goes, the debate remains stuck between endless calls for more money (which betray a naive assumption that there is a committee or person who is slicing up research funding like a cake) and a reluctance by Government to involve its citizens more actively in the debate about what it should fund, how and why?
It is a charade that serves no one’s interests well.