The UK’s medical research economy is biased towards funding work that is essentially about finding cures.
Being an essentially altruistic society we respond accordingly as a population. This summer many of us will do all manner of activities to raise money for a cure. Research is a runner, in every sense!
But, of the money raised for research through these donations and our taxes, only something like 6% will go towards things like disease management or quality of life issues for patients.* It is probably less than this if you take out some of the funding for things like health systems research.
Given the time and opportunity to consider such details in more depth, fellow citizens begin to challenge the bias in our research economy. Yes,,one of the most common questions I get asked at public meetings is: why isn’t more money spent on research to improve the quality of life for patients? A good question indeed.
It can feel that our medical research economy is fuelled by ‘test-tosterone’ as much as anything else sometimes. This was brought home to me by a rather telling tweet I saw on Friday. It asked if someone could confirm whether the new ‘Crick’ biomedical research centre in London would be the largest of its type under one roof in Europe. It was indeed from ‘The Crick’ as you might have guessed. Does it, should it, really matter I thought?
The consensus among research funders is typically hawkish and hard-line when it comes to the word ‘medical.’ I recall being utterly perplexed when, as CEO of the AMRC, my suggestion that we talk more about ‘health’ research – or even refer to ‘social care’ as part of our mission – was flatly turned down. Silly me I thought, I forgot that we are in a war on want not need.
That was in 2006 and there has been a bit of relenting since. Yet lab scientists still dominated the list of research signatories to AMRC’s excellent letter in Saturday’s Daily Telegraph. This called on the Government to do more to support research charities through the Charity Research Support Fund (CRSF).
Yep, the hawks are very much in power when it comes to deciding where the money should go my poor doves. And dementia is a good example of what we are in danger of overlooking as a result.
We admonish ourselves for the lack of progress in discovering viable treatments over the last 20 years. But actually, just as troublesome, is that there has not been the step change in how we care for people with dementia in that time either. Too many people continue to end their days institutionalised, pumped full of anti-psychotics and ‘taken care of’ by poorly trained staff. It is taking a Prime Minister’s challenge to bring us to our senses.
Fact is, you can have a hard time living with disease in the UK. You can also, have a hard time dying from it too. Such is our obsession – our hyped-up expectation – that we will be able to treat ourselves out of existence.
Public involvement gurus often focus on how we have or have not changed the research process to assess our success as reformers. But the real failure we need to confront – and it is a failure – is that we have not influenced a greater change in the portfolio of research funded in the UK so that it is more aligned with patient needs.
The advent of tools such as the James Lind Alliance PSPs will make an increasing difference particularly to the approach funders such as NIHR. But we have a long way to go yet.
We must throw down the gauntlet to our hawks.
*UKCRC Health Research Analysis 2013