If research funding can sometimes appear like a poker game, what cards do we hold as a patients and the public?

I once went to Las Vegas. It is a long, long time ago now. But I remember it being a very strange experience.

Everything is turned in on itself. Away from the inhospitable heat of the sidewalks. Or, more accurately, everything – from hotel bedrooms to burger joints and cocktail bars – is turned to face into hangar-sized casinos which are open 24/7. Because if you’re in the Las Vegas then all you want to do is gamble, right?

For most – whose resources are frankly limited – this gambling takes the form of slot machines. These are glorified versions of what you’ll find at English seaside amusement arcades. Lights flash everywhere. The air is filled with bleeps and the sound of coins falling into slots. But if you’re rich enough then you can break away from this melee and join exclusive clubs, playing poker and other high stakes games behind closed doors.

I sometimes wonder whether science funding is taking on the airs of a poker game m. There’s our public funders – Government, publicly funded charities – spending their money while everyone looks over their shoulder. Even industry to an increasing extent. And then there’s the philanthropists: Gates and Zuckerberg being the most obvious examples and spending collectively tens of £billions. But with many others joining them – wanting to do good no doubt but in their own inimitable way and with the sort of money that really can move mountains.

And to be honest I really can’t decide whether this is a good thing or a bad thing. On the one hand it means lots more money being spent on research which is great, right? But, on the other, there’s no guarantee it’s being spent in the public interest is there? Because what people forget is that while public funders when invited around any table must always show their hand, philanthropists are under no obligation to reveal any of their cards whatsoever. More over, by the time we get to the sorts of eye-watering sums coming into play with philanthropists most of our charities are well out of the game.

Some time ago I wrote an open letter to Zuckerberg (the founder of Zuckerberg) on this blog. This, after he’d announced his flight of fancy donation to research to cure everything. I asked him to involve people in deciding how it was spent. I never got a reply. Which surprised me because his data geeks probably knew I was writing it before I did. Now I suspect he’s too busy being fined for me to ever have a chance of a reply.

Fact is we have no way of telling whether it’s all in the public interest or not – other than the good news stories they tell us and themselves. And I worry that so entangled are we all becoming across research that we may not ‘call out’ the philanthropist who is not acting with the public interest in mind. Or not until there was pressure from the media and the public which is never a good position to get into. I hope I’m wrong but it is a worry.

The other issues I ponder and wonder whether to worry about are more insidious things. First, it’s the degree to which funders seem increasingly intoxicated with risk. And the bigger the risk the better. It’s as if they are saying what’s gone before is done and dusted. We’ve exhausted what’s there and the returns are too small for all the effort. Sounds like the closure of the coal mines in the 1980s.

But we know that there has been terrible waste in science already. Also that one of the reasons for this is that it has not focused on the needs and priorities of patients and carers and the public. Sometimes just sometimes the lurch towards risk feels like the science funding equivalent of chasing the dragon in search of ever greater highs. Boring can be good you know. It can be very very good from a patient perspective if it means attention to pain, fatigue and de-medicalising health.

I also wonder whether a double standard is at play here.

When the Wellcome Trust trumpeted it’s new Leap Fund yesterday with £250M downloaded from its reserves plus a little help from venture capitalists and other risk-takers the announcement was crafted around all the usual messages on innovation, new ideas etc etc. But if you strip all this away it’s really about leaps of faith. And if that is the case, why do funders increasingly resist adequately funding public engagement and involvement on the basis that, well, er, they are leaps of faith. That the evidence base is minimal and we just can’t afford such a punt? Mmmmm. I think that’s crass don’t you?

It’s probably worth pointing out that however good Wellcome Trust’s public engagement programme is – and it is very, very good – as a private charitable trust it is under no obligation to, nor does it, involve the public in setting its research priorities or making funding decisions to any great extent.

I’m sure my fears are unfounded. But if they are not, what to do about it is a conundrum. Can we – patients, carers and the public – ever be the dealer? Probably not. Can we set the rules of the game? Possibly.

It would be good to see philanthropists strongly encouraged to sign up to bodies like AMRC which at least ensure some quality control. Perhaps we could claim PPI refunds on the science that clearly has wasted good money? Or just for once ensure that all research funding decisions – however risky – is informed by patient experience. I’m looking forward to someone setting up the ‘Leap of Faith’ fund for publicly chosen science. Now that would be good,

For, just remember, as the tax-payer pulling on that ‘one-armed’ bandit every day, one way or other you’re going to be footing the bill for an increasingly high stakes game.

There, I’ve shown my hand as ever.

2 thoughts on “If research funding can sometimes appear like a poker game, what cards do we hold as a patients and the public?

  1. You are right ,the private charities can really do what they like , what worries me is the semi ,grey area ones , the ones that were old church funds that were consumed by the NHS in 1948 and then into NHS charities and now into private ones that only fund NHS projects , their money was public but somehow got hijacked along the way and the public and the community have no say how the funds are spent or are entitled to any of the monies ,which are vast,I think these should be more carefully regulated.

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