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.
Simon Denegri's Lay Review 
Thanks for posting this Simon – a thought provoking, interesting read. As chief executive of the Association of Medical Research Charities I felt compelled to respond and offer my thoughts and perspective. Your blog makes a lot of good points but it portrays a broad image of charities that doesn’t fit with the trends that I see within AMRC’s membership. A number of AMRC’s members are pursuing innovative funding approaches whereby they are approaching government as a partner, rather than a benefactor.
In the post-Brexit world we are now approaching, Government have set out a number of ambitious aims. The Industrial Strategy and accompanying sector deal for the life sciences articulate a number of such aims which centre on healthcare. Many medical research charities, far from hanging on for hand-outs, want to work with government to achieve shared aims. For example, one of the Industrial Strategy’s four over-arching cross-Whitehall Grand Challenge areas focuses on healthy ageing – an area that is of interest to many medical research charities and the patients they serve.
Good examples of charity-government partnerships include Asthma UK and Innovate UK collaborating to develop low-cost, accurate asthma diagnostic tools, and Alzheimer’s Research UK leveraging money from the Department of Health to co-fund the Dementia Discovery Fund alongside 7 world-leading pharmaceutical companies including Biogen, GSK, Johnson & Johnson, Lilly, Pfizer and Takeda. The Life Sciences Industrial Strategy proposed establishing a new Health Advanced Research Programme (HARP). This is in very early stages of development but the government will need to work with the charity sector to make this recommendation a reality.
Of course, the sector isn’t homogeneous and it can be easier for large charities to propose such ambitious partnerships. However, opportunities such as HARP open doors for the sector to collaborate to achieve shared ambitions. Taking HARP as an example, key areas of suggested focus include healthy aging and early diagnostics – areas where charities with focuses across a range of disease areas could coalesce.
AMRC would urge that government machinery allows charities of a range of sizes to partner and engage. The wealth of assets in small charities – for example Autistica funding the world’s first study into understanding suicide in autism – are at risk of being over-looked. Patients and those with long term conditions can make the way that tax-payers money is spent more meaningful; by ensuring that it meets their needs – tax-payers themselves!
The announcement of The Brain Cancer initiative earlier this week also prompted thoughts in response to your post. The initiative, which is bringing government, regulators, charities and others together to tackle a global challenge is another example of powerful collaboration to effect positive change. Both Government and CRUK announced funding for brain cancers – demonstrating how government can leverage investment from the sector in a partnership. I do believe more charities need to come together to influence funding priorities so money is spent on the things that matter most to patients and those living with long term conditions. Looking ahead, issues with co-morbidities will become increasingly relevant and this is something all research funders will have to grapple with. It is also something that will require joint and collaborative working to address.
As a final point, it is my belief that if the system is set up for charities to truly be partners then perhaps the image (and sometimes reality) of charities coming to Ministers seeking more research funding in ‘their’ specific disease area will be changed.
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