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.

Photo: Getty
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The Prevent strategy needs a rethink, not a rebrand

A bad policy by any other name is still a bad policy.

Yesterday the Home Affairs Select Committee published its report on radicalization in the UK. While the focus of the coverage has been on its claim that social media companies like Facebook, Twitter and YouTube are “consciously failing” to combat the promotion of terrorism and extremism, it also reported on Prevent. The report rightly engages with criticism of Prevent, acknowledging how it has affected the Muslim community and calling for it to become more transparent:

“The concerns about Prevent amongst the communities most affected by it must be addressed. Otherwise it will continue to be viewed with suspicion by many, and by some as “toxic”… The government must be more transparent about what it is doing on the Prevent strategy, including by publicising its engagement activities, and providing updates on outcomes, through an easily accessible online portal.”

While this acknowledgement is good news, it is hard to see how real change will occur. As I have written previously, as Prevent has become more entrenched in British society, it has also become more secretive. For example, in August 2013, I lodged FOI requests to designated Prevent priority areas, asking for the most up-to-date Prevent funding information, including what projects received funding and details of any project engaging specifically with far-right extremism. I lodged almost identical requests between 2008 and 2009, all of which were successful. All but one of the 2013 requests were denied.

This denial is significant. Before the 2011 review, the Prevent strategy distributed money to help local authorities fight violent extremism and in doing so identified priority areas based solely on demographics. Any local authority with a Muslim population of at least five per cent was automatically given Prevent funding. The 2011 review pledged to end this. It further promised to expand Prevent to include far-right extremism and stop its use in community cohesion projects. Through these FOI requests I was trying to find out whether or not the 2011 pledges had been met. But with the blanket denial of information, I was left in the dark.

It is telling that the report’s concerns with Prevent are not new and have in fact been highlighted in several reports by the same Home Affairs Select Committee, as well as numerous reports by NGOs. But nothing has changed. In fact, the only change proposed by the report is to give Prevent a new name: Engage. But the problem was never the name. Prevent relies on the premise that terrorism and extremism are inherently connected with Islam, and until this is changed, it will continue to be at best counter-productive, and at worst, deeply discriminatory.

In his evidence to the committee, David Anderson, the independent ombudsman of terrorism legislation, has called for an independent review of the Prevent strategy. This would be a start. However, more is required. What is needed is a radical new approach to counter-terrorism and counter-extremism, one that targets all forms of extremism and that does not stigmatise or stereotype those affected.

Such an approach has been pioneered in the Danish town of Aarhus. Faced with increased numbers of youngsters leaving Aarhus for Syria, police officers made it clear that those who had travelled to Syria were welcome to come home, where they would receive help with going back to school, finding a place to live and whatever else was necessary for them to find their way back to Danish society.  Known as the ‘Aarhus model’, this approach focuses on inclusion, mentorship and non-criminalisation. It is the opposite of Prevent, which has from its very start framed British Muslims as a particularly deviant suspect community.

We need to change the narrative of counter-terrorism in the UK, but a narrative is not changed by a new title. Just as a rose by any other name would smell as sweet, a bad policy by any other name is still a bad policy. While the Home Affairs Select Committee concern about Prevent is welcomed, real action is needed. This will involve actually engaging with the Muslim community, listening to their concerns and not dismissing them as misunderstandings. It will require serious investigation of the damages caused by new Prevent statutory duty, something which the report does acknowledge as a concern.  Finally, real action on Prevent in particular, but extremism in general, will require developing a wide-ranging counter-extremism strategy that directly engages with far-right extremism. This has been notably absent from today’s report, even though far-right extremism is on the rise. After all, far-right extremists make up half of all counter-radicalization referrals in Yorkshire, and 30 per cent of the caseload in the east Midlands.

It will also require changing the way we think about those who are radicalized. The Aarhus model proves that such a change is possible. Radicalization is indeed a real problem, one imagines it will be even more so considering the country’s flagship counter-radicalization strategy remains problematic and ineffective. In the end, Prevent may be renamed a thousand times, but unless real effort is put in actually changing the strategy, it will remain toxic. 

Dr Maria Norris works at London School of Economics and Political Science. She tweets as @MariaWNorris.