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Shining a light on philanthropy in medicine

Worldwide, people are amazingly generous.  Money flows in whenever there’s a disaster yet donors tend to support medical research only in fields where they have direct experience.  From cancer – once so afeard it was widely referenced “The Big C” – to the rare disorders (Americans refer to orphan diseases) which affect only a handful of people.  Rare they may be, but there are between five and seven thousand of them!

The UK is a world leader in medical research and its Association of Medical Research Charities helps philanthropists like me to focus on quality projects.

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From year to year it can seem as if some areas of research are slow to advance.  Even the most staid of scientific findings is tentative, always subject to revision. Each new finding raises new questions to build on, probe and exploit, so that we can be more confident about meaning. Good research scientists not only write papers but are also always pulling them apart! This is what robust scientific enquiry is; and is necessary to ensure research findings (and their interpretation) have a solid base.

Research is expensive, it’s often slow and sometimes produces absolutely nothing; or even unwelcome results. And research is humbling simply because everything one does needs verification and is open for reconsideration. Every clever idea is subject to peer review – which for a philanthropist can sometimes be a cruel tool – having to arbitrate between projects of near-equal merit.

New treatments are being tried all the time but research has not always shown that they work or if they are safe. We need robust, large, well-controlled studies evaluating if effectiveness is greater than placebo. Without good evidence we are just tinkering. As Sherlock Holmes said, “It’s a capital mistake to theorise before one has data”.

So it’s not necessarily a bad thing when the science community changes its mind. Science is always creating new knowledge at the forefront.

It’s not often that I disagree with the great Sir Isaac Newton. But his metaphor of “standing on giants’ shoulders” implies a serial approach to research. Time was when discoveries did indeed come from a relay-race approach. But today’s experts need to work together, addressing the challenges in groups with varying leaders, as cyclists do in pelaton formation.

I started as a direct sponsor of medical research; then in 2004 as founder of the medical research charity Autistica; and now as creator of a three-year think tank which will make a long term and wider impact on autism research. I’m also currently funding pure research into Childhood Disintegrative Disorder.

Despite the vastly different fields – the basic research journey is generic: discover – gather – analyse – create – share.

The days are long gone when findings arose from the lone scientist isolated in the laboratory. The most successful researchers are team workers. A study of Nobel Laureates found that they collaborated with colleagues more often than the non-prize winner scientists who worked competitively. So I believe that the basis of real progress comes when teams work in collegiate mode: partnerships, alliances, associations, affiliations, consortia, networks. These are the laboratories of today.

It is a golden age for medical research: equipment costs are coming down and my own discipline of information technology is powerful in drawing data sets together and mining down for their secrets. Digital media and open access now allow researchers to benefit from other people’s test results. When a group lacks resources or expertise, it can combine with others – not necessarily permanently – to form centres of excellence.

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Roundabout the millennium, I set the target that we should understand the causes of autism by 2012 and halve its global cost by 2020.  Today we understand the causes of less than 5% of cases. But the cost target might be achievable – through earlier diagnosis, effective interventions and changes in society such as people on the autistic spectrum getting into paid work. Indeed, my own industry has a strategic aim: to get a million people with a disability such as autism into employment in the IT sector – globally – by 2020. My business years have made me a great believer in managing to targets.

We cannot always expect dramatic breakthroughs, such as cracking the genetic code or the discovery of stem cells; we rather seek a series of incremental advances. For it is by trial and error, by subtle probing and evaluation, that we generally get to understand the beautiful secrets of nature.

Read more from Dame Stephanie Shirley in her acclaimed memoir, Let IT Go.

Dame Stephanie Shirley
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