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.

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Why hasn’t British Asian entertainment built on the Goodness Gracious Me golden age?

It is 20 years since the original radio series of Goodness Gracious Me aired. Over two decades, the UK media portrayal of Asians hasn’t used its success to evolve.

Save for a handful of special one-off episodes, Goodness Gracious Me hasn’t occupied a primetime TV slot for nearly two decades. Yet still it remains the measuring stick for British Asian comedy.

The sketch show, which transitioned seamlessly from radio to screen (it started as a BBC Radio 4 series in 1996), has stood the test of time and is as much a staple of modern British Asian culture as Tupperware or turning up an hour late.

What Goodness Gracious Me did so expertly was to take a set of serious issues facing first, second and now, I suppose, third generation migrants, and turn them on their heads. 

In making light of the pressures of academic expectation or family drama, Goodness Gracious Me wasn’t playing down the poignancy of such concerns; it was raising awareness and combatting their uglier side with humour.

It offered resonance and reassurance in equal measure; it was ok to have an embarrassing uncle who insisted he could get you anything much cheaper, including a new kidney, because other people like you did too.

That Goodness Gracious Me was broadcast on a mainstream channel was also a victory for minorities; it made us feel integrated and, perhaps more importantly, accepted. Against the backdrop of Brexit, what wouldn’t we give for that treatment now?

Really, though, the jewel in Goodness Gracious Me’s crown was its willingness to recognise diversity within diversity. It is a relic of a departed era when discourse on TV around Asians was different, when the broad church of that term was truly represented, rather than reduced to one catchall perception of British Muslims.

Goodness Gracious Me offered insight into the experiences and idiosyncrasies – religious or otherwise – of Indians, Pakistanis, Bangladeshis, Sri Lankans and even English people. It’s what made it so accessible and, in answering why subsequent programmes have failed to reach similar heights, this is a good starting point.

Without the flexible sketch format, the modern Asian sitcom Citizen Khan has struggled to cover multiple topics, and, by being specifically about a Muslim family, it leaves many non-Muslim Asians wondering: where’s ours?

I hasten to add that I feel plenty of sympathy for the British Muslim community, hounded by tabloid headlines that attack their faith, but it would be disingenuous to suggest that non-Muslim Asians are sitting pretty in 2016 and don’t need a similar level of support in terms of positive public perception.

The current volume of British Asian media products is fairly good. The BBC has its dedicated network, The Good Immigrant essay collection was one of the outstanding reads of the year, and we still have champions of comedy in Romesh Ranganathan and Nish Kumar.

But I think ultimately it comes down to the broadness of appeal, rather than the quantity of products. Goodness Gracious Me was not only able to engage the full spectrum of British Asia; it transcended its target audience and was on terrestrial TV.

The British Asian media on offer now is up against it, released as the country’s attitude towards foreigners completes a full circle back to the same suspicion my grandfather encountered in the Sixties.

Fewer outlets are willing to explore the stretch of what it means to be Asian, either by denying it due consideration in mainstream shows or by peddling their own monolithic observations. The BBC Asian Network, for example, is laudable in its existence, but does little to engage the young Asians who aren’t into techno spliced with Bhangra.

The mainstream representations of Asians in Western film and television that are commissioned, meanwhile, are irritatingly limited and sometimes inaccurate. In an article for the Guardian last year, Sara Abassi lamented the disproportionate appetite for “gritty post-9/11 films about conservative Pakistani families”, and that the researchers of American series Homeland failed to realise that the national language of Pakistan isn’t Arabic.

When I interviewed the actor Himesh Patel for the No Country for Brown Men podcast, he suggested that the answer to re-establishing Asians in mainstream media, both here and in America, was three-fold. The first challenge to overcome was for outlets to acknowledge that not all Asians fit the same religious or cultural profile; the second was to be open to placing Asians in non-Asian specific products to better reflect their presence in society.

Patel, who is best known for his portrayal of Tamwar Masood in the soap opera EastEnders, made his third recommendation based on this role. He felt that characters should be written with only their personality in mind, making the ethnicity of the actor who plays them incidental. Tamwar’s awkwardness but underlying kindness, Patel said, was what defined him – not his skin colour.

Goodness Gracious Me, though a primarily Asian show and a comedy at that, actually taught some salient lessons about representation. It succeeded in providing a window into a multiplicity of cultures, but at the same time wasn’t a total slave to the politics of identity – several of the 100-plus characters needn’t have been Asian at all. It was reflexive to the times we lived in and a perfect advertisement for empathy. That is why we still talk about it today.

Rohan Banerjee is a Special Projects Writer at the New Statesman. He co-hosts the No Country For Brown Men podcast.