Why do charities play the numbers game when talking ‘burden of illness’ and medical research?

I notice that there has been a fair bit of news generated today by the charity, Autistica, who have published a study showing that autism costs the UK £32 billion per year in terms of treatment, lost earnings etc.

The study was conducted by researchers at the London School of Economics (LSE) and follows one some years ago which put the cost at £27 billion. This latest research uses new data to update that figure.

The numbers are mind-boggling. Particularly since they would seem to show that autism is more expensive than cancer because of the lifespan of care someone with autism needs. Also that only £6.60 per person is spent on autism research compared to £295 on cancer research.

The data has certainly challenged my assumptions and, indeed, made me go searching for more information. I did not realise, for instance, that approximately 600,000 people have autism in the UK.

It has become more and more common in the last few years for charities to publish these sorts of studies. A key motivation – if not the prime one in many cases – is to draw public and political attention to their cause. So Austistica have certainly succeeded on this score.

Alongside patient stories such numbers can also be powerful in portraying the extent of unmet need in a patient population. And this can be both useful and impactful in a number of scenarios. For instance, a reviewer looking at a grant proposal might find it helpful to see such evidence in reaching judgement about the value of what is being proposed in terms of patient and carer outcomes. One can also see them being useful, when looked at with other data, to think about the planning of future health and social care services.

But as a pitch for more money to go into medical research? I am not so sure. Perhaps with the public as part of a well executed fundraising strategy. However, when it comes to politicians and in particular Government I have yet to see strong evidence that it makes an indelible mark or, more importantly, leads to significant changes in funding.

Fact is all Governments of every shade have now developed a thick skin when it comes to such pitches in the same way that cricketers have got used to bowlers pitching bouncers at them.

As Governments must. To give in would simply lead to an unedifying bidding war. As well as short-circuiting the pretty good mechanisms for determining how funding is currently distributed including – in NIHR’s case – the use of methodology such as the James Lind Alliance Priority Setting Partnerships (PSPs) to determine patient priorities.

Such numbers are therefore blunt instruments. But there’s always an exception to every rule. And on this basis, good luck to them.

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