Crowdfunding is all the rage, but can it work for medical research?
"Our goal is absolutely to democratize knowledge," says Denny Luan. "Modern science has such a rush for fast results - publish or perish, output over process. We'd like to show the greater public that science does not have to be locked up behind monasterial walls. We'd like to change the way science is shared - in an engaging, deliberately beautiful way. Real-time, open-access and with great design."
Luan is co-founder of what, until this morning, was known as "Microryza" - the site has been renamed "Experiment" as part of a revamped branding strategy - a potentially revolutionary crowdfunding platform that is looking to do for science what Kickstarter has done for the entertainment industry.
For those unfamiliar with the concept of crowdfunding, what sites such as Experiment and Kickstarter offer is an alternative method of funding creative or academic projects through the internet.
In Kickstarter terms, this could mean that if you had songs for an album you wanted to record or a script for a film you would like to see made, you could use the Kickstarter site to advertise the project and invite interested parties to contribute - usually small-scale - donations in order to finance the project.
Crowdfunding has been a source of finance for human rights campaigns, as well as resurrecting cult network-cancelled TV shows (such as the forthcoming Veronica Mars movie) or financing the output of industry-disaffected musicians like Amanda Palmer.
Experiment aspires to harness the enthusiasm around these crowdfunded projects for scientific research.
The idea behind Experiment is that - rather than rely on a small resource pool of institutional grants or philanthropy - scientists will now be able to fund their own projects using donations from interested lay people.
The idea is that - rather than rely on a small resource pool of institutional grants or philanthropy - scientists will now be able to fund their own projects using donations from interested lay people. This might include people who have a disease that a scientist is proposing to investigate a cure for, or enthusiasts of a particular area of research.
But funding a piece of scientific research is not analogous to recording an album or shooting a film.
The challenge Luan and his colleagues face is not only to make funding scientific research as compelling to an audience of potential financiers as the glamorous worlds of film and music, but also to maintain a social media-type platform that sustains interests in these projects as they are completed and move through the various stages of development.
"In order to have a successful crowdfunding campaign, it is necessary to wear a 'marketing hat,'" admits Amy Belfi, a PhD student and musician whose "Can music improve memories in patients with brain damage?" study was successfully crowdfunded.
"Promoting your research is very important in science, so the main difference here is the audience. Typically, you are 'marketing' your research to grant reviewers, whereas in crowdfunding, you are marketing your research to the public."
How does scientific crowdfunding differ from crowdfunding creative projects?
Although mainstream crowdfunding hubs Kickstarter and Indiegogo have had some limited success with financing science projects, Luan believes a separate platform is necessary for scientific research.
"Kickstarter and Indiegogo were designed for creative artists, and because of that, it's worked well for the creative process," says Luan.
"However, scientific research usually follows a different process, where the output is not typically a tangible reward like a T-shirt or mug. We prefer instead to focus on the scientific process itself, both making it easier for researchers to be transparent about it and for backers to be engaged with what is happening with the science."
He adds: "To see this in action, I encourage you to back a project for yourself!"
Perhaps crucially, Luan and co-founder Cindy Wu are young scientists themselves - former University of Washington graduate students - who arrived at Microryza in 2012 as a solution for funding their own projects.
After polling their professors, they found that everyone was frustrated with the obstacles associated with the highly competitive funding process - where 80% of proposals are rejected, the average researcher spends 12 weeks a year writing proposals, and the average age of a grant recipient in biomedicine is 42.
Can crowdfunding transform scientific research?
In theory, crowdfunding could be a viable model for drumming up funding and media attention for small, early stage ideas and high-risk proposals that the current grant systems - offered by institutions such as the National Institutes of Health (NIH) and National Science Framework (NSF) - are reluctant to invest in."Yes, absolutely," Luan agrees, although he sees the potential for crowdfunding to have a much bigger and more transformative impact on research.
"That was the original pitch for value for scientists of all types and backgrounds. However, these days, the situation has become so dire that projects and grants that NIH or NSF would fund are no longer getting the backing they deserve.
So we're basically picking up a lot of slack and devastation caused by the sequester and budget cuts. NIH paylines and acceptance rates are at historic lows. As in, over the entire history of federally funded science."
However, there is a long way to go before crowdfunding can match the scale of traditionally funded medical research.
The Prion Alliance
"Crowdfunding for science is great, but it's fundamentally of a different scale than grant funding or large-scale philanthropy," admits Sonia Vallabh, who - as one half of the husband-and-wife Prion Alliance research project - is Microryza/Experiment's most high-profile success story to date.
"Our campaign, which raised $17,000, is one of the larger donation-based scientific crowdfunding campaigns to be successfully funded," Vallabh says.
"Projects of a larger order of magnitude have been tied to a product. It is a different animal. It's nowhere close to replacing those two traditional funding sources, and though its influence could grow and I hope it does, the existence of crowdfunding definitely shouldn't take our eye off the ball of the NIH budget."
"For us, crowdfunding is a useful and relatively quick way to fund small, catalytic experiments. But let there be no doubt: the money we've been able to raise, while wonderful, is not keeping the lights on, nor developing disease models from scratch, nor paying anyone's health benefits. Grants do that."
Vallabh says that the Prion Alliance will use crowdfunding for future projects, though their intention is to use these "quick turnaround micro-grants" to fund the generation of preliminary data that their collaborators can then use as a platform to apply for "more sustained and robust funding."
Some critics have suggested that the nature of crowdfunding for scientific research means that only the most social media-friendly proposals will thrive.
For example, projects involving excavating a dinosaur and studying how to eliminate spam mail were both over-funded in donations, while a current proposal examining post-traumatic stress disorder in veterans has received just $10 in pledges, with only 6 days left to raise the remaining $11,990 target at the time of writing.
Crowdfunding could be a viable model for funding small, early stage ideas and high-risk proposals.
But the work by Vallabh and her husband Eric Minikel has genuinely inspired people - their story traveled beyond the enclave of social media-hip "science nerds" thought to comprise Microryza/Experiment's fan base and into high-profile pieces in The New Yorker.
Diagnosed as carrying a rare mutated gene that causes "fatal familial insomnia" (FFI) - a prion disease affecting just one in a million people, where death usually follows shortly after symptoms are detected - Vallabh and Minikel took the matter of finding a cure to this little-researched condition into their own hands.
Although neither of them had a background in science, following the sudden death of Vallabh's mother from FFI in 2010, both Vallabh and Minikel devoted their lives to learning how to analyze genetic code - putting themselves back through school at Harvard and the Massachusetts Institute of Technology and volunteering in neurogenetics labs.
An initial request via Microryza for just $8,000 to fund trials on a potential treatment in mice was met with an enthusiastic and sympathetic response. The couple raised 215% of their target fund, which can also now finance subsequent research phases.
We asked Sonia if she felt crowdfunding had jump-started initial research into a cure for her condition in a way that would not be possible traditionally, given the couple's lack of scientific experience.
"While we are working towards grant eligibility in our day jobs as scientists, we were definitely excited about crowdfunding as a way to get small projects off the ground on a shorter timeline," she says.
"The process of ramping up our own credentials will take time, on top of which the grant cycle is both slow and low-yield. As a non-traditional funding model, Microryza definitely provided a forum more conducive to us sharing our story and personal motivations, as well as our scientific plan and collaborators."
Accountability, credibility and transparency
Although all proposals are currently vetted by Luan and his colleagues for both scientific credibility and to ensure the researchers are who they claim to be, the next step for Microryza/Experiment to secure credibility within the scientific community will be in implementing a rigorous peer review process to assure project backers that reported results are accurate and evidence based.
Anonymous donations may present issues with ethics and transparency.
"We've been testing peer review tools internally," says Luan, "but our goal for the near future is to begin to open up the proposal evaluation process, as well as the micropublished content that researchers are already sharing on the site - datasets, protocols, results. We care very much in building a trusted and rigorous community for funders."
Another element inherent to crowdfunding that may need to be revised in Experiment's model going forward is the option the site provides for funders to remain anonymous. We asked Luan if this presents any ethical issues, as transparency in scientific funding is a contentious area.
"There are of course ethical issues with disclosing particular interests for funded research, and we realize this is a challenge," he admits. "However, we do believe strongly in 100% transparency, and we think that any potential ethical issues can be mitigated with fuller transparency and trust policies."
He adds: "Also, in our minds, this is a good problem to face, because it means our system is working."
With revised branding in place and, as this piece went to press, a new partnership announced with SciFund Challenge that has unveiled more than 30 new proposals, Experiment - who support themselves by taking a 5% cut of the money raised by successfully funded projects - looks set to go from strength to strength as a new tool for connecting scientific communities and potentially providing funding solutions.
Denny Luan and team, meanwhile, are not regretting diverting their promising careers in research into launching an internet start-up company:
"Ideally, my cofounders and I would like to return to grad school, but we've seen the light," he insists.
"Why would we willingly go back into a broken system - funding, peer review, collaboration, and translation of intellectual property - if we think we can make a positive impact on this system for other young scientists like ourselves?"
Written by David McNamee
Copyright: Medical News Today
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