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 is it called Storm Doris? The psychological impact of naming a storm

“Homes being destroyed and lives being lost shouldn’t be named after any person.”

“Oh, piss off Doris,” cried the nation in unison this morning. No, it wasn't that everyone's local cantankerous old lady had thwacked our ankles with her stick. This is a different, more aggressive Doris. Less Werther’s, more extreme weathers. Less bridge club, more bridge collapse.

This is Storm Doris.

A storm that has brought snow, rain, and furious winds up to 94mph to parts of the UK. There are severe weather warnings of wind, snow and ice across the entire country.

But the real question here is: why is it called that? And what impact does the new Met Office policy of naming storms have on us?

Why do we name storms?

Storm Doris is the latest protagonist in the Met Office’s decision to name storms, a pilot scheme introduced in winter 2015/16 now in its second year.

The scheme was introduced to draw attention to severe weather conditions in Britain, and raise awareness of how to prepare for them.

How do we name storms?

The Name our Storms initiative invites the public to suggest names for storms. You can do this by tweeting the @metoffice using the #nameourstorms hashtag and your suggestion, through its Facebook page, or by emailing them.

These names are collated along with suggestions from Met Éireann and compiled into a list. These are whittled down into 21 names, according to which were most suggested – in alphabetical order and alternating between male and female names. This is done according to the US National Hurricane Naming convention, which excludes the letters Q, U, X, Y and Z because there are thought to be too few common names beginning with these letters.

They have to be human names, which is why suggestions in this list revealed by Wired – including Apocalypse, Gnasher, Megatron, In A Teacup (or Ena Tee Cup) – were rejected. The Met Office received 10,000 submissions for the 2016/17 season. According to a spokesperson, a lot of people submit their own names.

Only storms that could have a “medium” or “high” wind impact in the UK and Ireland are named. If there are more than 21 storms in a year, then the naming system starts from Alpha and goes through the Greek alphabet.

The names for this year are: Angus (19-20 Nov ’16), Barbara (23-24 Dec 2016), Conor (25-26 Dec 2016), Doris (now), Ewan, Fleur, Gabriel, Holly, Ivor, Jacqui, Kamil, Louise, Malcolm, Natalie, Oisín, Penelope, Robert, Susan, Thomas, Valerie and Wilbert.

Why does this violent storm have the name of an elderly lady?

Doris is an incongruous name for this storm, so why was it chosen? A Met Office spokesperson says they were just at that stage in their list of names, and there’s no link between the nature of the storm and its name.

But do people send cosy names for violent weather conditions on purpose? “There’s all sorts in there,” a spokesperson tells me. “People don’t try and use cosy names as such.”

What psychological impact does naming storms have on us?

We know that giving names to objects and animals immediately gives us a human connection with them. That’s why we name things we feel close to: a pet owner names their cat, a sailor names their boat, a bore names their car. We even name our virtual assistants –from Microsoft’s Clippy to Amazon’s Alexa.

This gives us a connection beyond practicality with the thing we’ve named.

Remember the response of Walter Palmer, the guy who killed Cecil the Lion? “If I had known this lion had a name and was important to the country or a study, obviously I wouldn’t have taken it,” he said. “Nobody in our hunting party knew before or after the name of this lion.”

So how does giving a storm a name change our attitude towards it?

Evidence suggests that we take it more seriously – or at least pay closer attention. A YouGov survey following the first seven named storms in the Met Office’s scheme shows that 55 per cent of the people polled took measures to prepare for wild weather after hearing that the oncoming storm had been named.

“There was an immediate acceptance of the storm names through all media,” said Gerald Fleming, Head of Forecasting at Met Éireann, the Irish metereological service. “The severe weather messages were more clearly communicated.”

But personalising a storm can backfire. A controversial US study in 2014 by PNAC (Proceedings of the National Academy of Sciences) claimed that hurricanes with female names lead to higher death tolls – the more “feminine” the name, like Belle or Cindy, the higher the death toll. This is not because female names are attached to more severe storms; it is reportedly because people take fewer steps to prepare for storms with names they perceive to be unintimidating or weak.

“In judging the intensity of a storm, people appear to be applying their beliefs about how men and women behave,” Sharon Shavitt, a co-author of the study, told the FT at the time. “This makes a female-named hurricane . . . seem gentler and less violent.”

Names have social connotations, and affect our subconscious. Naming a storm can raise awareness of it, but it can also affect our behaviour towards it.

What’s it like sharing a name with a deadly storm?

We should also spare a thought for the impact sharing a name with a notorious weather event can have on a person. Katrina Nicholson, a nurse who lives in Glasgow, says it was “horrible” when the 2005 hurricane – one of the fifth deadliest ever in the US – was given her name.

“It was horrible having something so destructive associated with my name. Homes being destroyed and lives being lost shouldn’t be named after any person,” she tells me over email. “I actually remember at the time meeting an American tourist on a boat trip in Skye and when he heard my name he immediately linked it to the storm – although he quickly felt guilty and then said it was a lovely name! I think to this day there will be many Americans who hate my name because of it.”

Anoosh Chakelian is senior writer at the New Statesman.