Can we crowdfund clinical research?

Kickstarter for drug trials.

Kickstarter's high-profile launch in the UK last month marks yet another step towards ubiquity for a thoroughly 21st century funding model. Driven by the simplicity of making online payments, crowdfunding sidesteps the limitations of traditional investment channels, instead harnessing the collective power of thousands of small-scale donations from the general public.

Kickstarter might have played host to more than $400 million in crowdfunded pledges since its launch in 2009, but one glance at the site's top ten funded projects – video games, fancy consumer tech, more video games – gives an indication of the relatively narrow scope of the crowdfunding model. Crowdfunding's main niche remains funding creative projects like albums, films and games, where the passion of fans can prompt huge surges in mass donation to bankroll new projects. But as this grass-roots funding method gains traction, new possibilities are beginning to open up.

Take drug development funding. In an era of shrinking government budgets and major funding cuts, could crowdfunding unlock a new source of financial support for the next generation of treatments and cures? Kickstarter excludes health and medical technologies from its fundable projects, but other companies are starting to catch on. MedStartr, a new crowdfunding platform launched this summer, got the ball rolling with a site dedicated to crowdfunding healthcare-related projects like physician videoconferencing, cancer support programmes and therapeutic exercise equipment. But another start-up has taken the concept a step further.

CureLauncher is a recently-launched website dedicated to crowdfunding early-stage clinical development as well as connecting patients and their families to the cutting edge of medical research. The site aims to provide alternative funding for important research projects and clinical trials in the US through large numbers of small contributions, which could be used as primary funding or as bridge funding so projects can continue to develop their science while they wait for federal grants. Like Kickstarter, CureLauncher takes a small percentage of each pledge to make its profit.

The website only launched in October, so doesn't yet have any major success stories to pin on its wall. Nevertheless, if the idea takes off, the potential advantages for US researchers are startling. With the US National Institutes of Health (NIH) facing $2.5 billion in budgets cuts for 2013, CureLauncher offers a platform to galvanise the people affected by chronic diseases and help make up this massive shortfall. 91 per cent of donations go directly to the research projects, and scientists only have to wait 30-45 days for their funds, as opposed to the two years it often takes for NIH funding to materialise. The site only works with heavily scrutinised NIH-level research, which might allay some fears about democratising a traditionally cautious and bureaucratic funding process.

But for CureLauncher's crowdfunding model to thrive in the long-term, it needs to create mass awareness of its sponsored projects, and connect to a large community of funders. That's why its creators, pharma lawyer Steve Goldner and product development expert Dave Fuehrer, have also placed a heavy emphasis on fostering a two-way relationship between researchers and the public. Donors can correspond with the researchers they are donating to, and the site also lists hundreds of enrolling clinical trials – their treatments explained without pharmajargon – so that patients can access early treatment.

It's still early days for CureLauncher, but its founders see the site as a global solution to a global problem, with ambitions to bring struggling research projects outside the US into the fold. It might be too early to tell if the crowdfunding model will work for drug research, but Kickstarter's track record proves that with enough public demand, huge sums of cash can be raised. And if the American public can shell out more than $3 m for a new range of fantasy gaming miniatures, one would hope it can scrape together a few dollars for potentially life-saving medical research.

More can be read here: http://www.pharmaceutical-technology.com/features/featurepeople-power-crowdfunding-clinical-research-funding/

CureLauncher seeks small scale donations. Photograph: Getty Images

 

Chris Lo is a senior technology writer for the NRI Digital network.

Getty
Show Hide image

Find the EU renegotiation demands dull? Me too – but they are important

It's an old trick: smother anything in enough jargon and you can avoid being held accountable for it.

I don’t know about you, but I found the details of Britain’s European Union renegotiation demands quite hard to read. Literally. My eye kept gliding past them, in an endless quest for something more interesting in the paragraph ahead. It was as if the word “subsidiarity” had been smeared in grease. I haven’t felt tedium quite like this since I read The Lord of the Rings and found I slid straight past anything written in italics, reasoning that it was probably another interminable Elvish poem. (“The wind was in his flowing hair/The foam about him shone;/Afar they saw him strong and fair/Go riding like a swan.”)

Anyone who writes about politics encounters this; I call it Subclause Syndrome. Smother anything in enough jargon, whirr enough footnotes into the air, and you have a very effective shield for protecting yourself from accountability – better even than gutting the Freedom of Information laws, although the government seems quite keen on that, too. No wonder so much of our political conversation ends up being about personality: if we can’t hope to master all the technicalities, the next best thing is to trust the person to whom we have delegated that job.

Anyway, after 15 cups of coffee, three ice-bucket challenges and a bottle of poppers I borrowed from a Tory MP, I finally made it through. I didn’t feel much more enlightened, though, because there were notable omissions – no mention, thankfully, of rolling back employment protections – and elsewhere there was a touching faith in the power of adding “language” to official documents.

One thing did stand out, however. For months, we have been told that it is a terrible problem that migrants from Europe are sending child benefit to their families back home. In future, the amount that can be claimed will start at zero and it will reach full whack only after four years of working in Britain. Even better, to reduce the alleged “pull factor” of our generous in-work benefits regime, the child benefit rate will be paid on a ratio calculated according to average wages in the home country.

What a waste of time. At the moment, only £30m in child benefit is sent out of the country each year: quite a large sum if you’re doing a whip round for a retirement gift for a colleague, but basically a rounding error in the Department for Work and Pensions budget.

Only 20,000 workers, and 34,000 children, are involved. And yet, apparently, this makes it worth introducing 28 different rates of child benefit to be administered by the DWP. We are given to understand that Iain Duncan Smith thinks this is barmy – and this is a man optimistic enough about his department’s computer systems to predict in 2013 that 4.46 million people would be claiming Universal Credit by now*.

David Cameron’s renegotiation package was comprised exclusively of what Doctor Who fans call handwavium – a magic substance with no obvious physical attributes, which nonetheless helpfully advances the plot. In this case, the renegotiation covers up the fact that the Prime Minister always wanted to argue to stay in Europe, but needed a handy fig leaf to do so.

Brace yourself for a sentence you might not read again in the New Statesman, but this makes me feel sorry for Chris Grayling. He and other Outers in the cabinet have to wait at least two weeks for Cameron to get the demands signed off; all the while, Cameron can subtly make the case for staying in Europe, while they are bound to keep quiet because of collective responsibility.

When that stricture lifts, the high-ranking Eurosceptics will at last be free to make the case they have been sitting on for years. I have three strong beliefs about what will happen next. First, that everyone confidently predicting a paralysing civil war in the Tory ranks is doing so more in hope than expectation. Some on the left feel that if Labour is going to be divided over Trident, it is only fair that the Tories be split down the middle, too. They forget that power, and patronage, are strong solvents: there has already been much muttering about low-level blackmail from the high command, with MPs warned about the dire influence of disloyalty on their career prospects.

Second, the Europe campaign will feature large doses of both sides solemnly advising the other that they need to make “a positive case”. This will be roundly ignored. The Remain team will run a fear campaign based on job losses, access to the single market and “losing our seat at the table”; Leave will run a fear campaign based on the steady advance of whatever collective noun for migrants sounds just the right side of racist. (Current favourite: “hordes”.)

Third, the number of Britons making a decision based on a complete understanding of the renegotiation, and the future terms of our membership, will be vanishingly small. It is simply impossible to read about subsidiarity for more than an hour without lapsing into a coma.

Yet, funnily enough, this isn’t necessarily a bad thing. Just as the absurd complexity of policy frees us to talk instead about character, so the onset of Subclause Syndrome in the EU debate will allow us to ask ourselves a more profound, defining question: what kind of country do we want Britain to be? Polling suggests that very few of us see ourselves as “European” rather than Scottish, or British, but are we a country that feels open and looks outwards, or one that thinks this is the best it’s going to get, and we need to protect what we have? That’s more vital than any subclause. l

* For those of you keeping score at home, Universal Credit is now allegedly going to be implemented by 2021. Incidentally, George Osborne has recently discovered that it’s a great source of handwavium; tax credit cuts have been postponed because UC will render such huge savings that they aren’t needed.

Helen Lewis is deputy editor of the New Statesman. She has presented BBC Radio 4’s Week in Westminster and is a regular panellist on BBC1’s Sunday Politics.

This article first appeared in the 11 February 2016 issue of the New Statesman, The legacy of Europe's worst battle