Crowdsourcing has the potential to change how medical research is both funded and carried out — and this could have a major impact in the quest to cure SCI, MS and many other disabilities. Every aspect of research, from deciding what to study, to designing clinical trials, to finding subjects, may get an Internet-powered makeover. And how will this new research model be paid for, if it enjoys more support from people than large institutions? By scientists passing the cyber-hat, in some instances.
This isn’t dreaming of something that may happen someday — “citizen science,” as supporters call it, is happening right now.
But first, a few definitions.
Crowdsourcing, according to Wikipedia, “is the practice of obtaining needed services, ideas, or content by soliciting contributions from a large group of people, and especially from an online community, rather than from traditional employees or suppliers.” Usually this is done via a website, or other Internet-based platform.
The term was coined in 2005 by two of Wired magazine’s editors, Jeff Howe and Mark Robinson, to describe a phenomenon they were tracking that didn’t yet have a name — businesses beginning to outsource their work to people via the Internet. Then in 2006, Howe wrote this in his blog: “Simply defined, crowdsourcing represents the act of a company or institution taking a function once performed by employees and outsourcing it to an undefined (and generally large) network of people in the form of an open call. This can take the form of peer-production (when the job is performed collaboratively), but is also often undertaken by sole individuals. The crucial prerequisite is the use of the open call format and the large network of potential laborers.”
Citizen Scientists Running Amok
Potentially, where research is concerned, this means scientists all over the world could be given incentives to share and collaborate in new ways. Currently, most medical research is done by a team in a place that receives a grant — usually a university. Then the team writes up a study and it’s published. Then, some other team somewhere else can read that study and decide to use it to further their own research. That new team subsequently gets a grant, performs a study based on something in the previous study and writes it all up for a journal. And so forth.
This is a very slow process.
But if that first team had an incentive and the ability to easily connect with other teams or even individuals interested in doing similar research in real time, then the results could be exponential.
Transparency Life Sciences is the first drug company to use crowdsourcing to help test lisinopril, a blood pressure med that may be a potential MS treatment. The company used a crowdsourced Web platform to blast open how it usually conducts trials. “Lisinopril is an ideal candidate for our strategy of radically redesigning the clinical trial process to assess the potential of drugs that might otherwise never be tested,” said Tomasz Sablinski, M.D., Ph.D, founder of TLS. “We invited anyone with an interest in helping to advance MS therapy to visit our website and contribute to the design process.”
And Genspace.org, a New York City-based “community biolab” is promoting “citizen science” by running what it calls a DIY-biohacker open lab. “In a biohacker laboratory, you can analyze your genome for mutations, your breakfast cereal for GMOs, you can explore your ancestry,” said its founder, Ellen Jorgensen, in her TED Talk, Biohacking — You Can Do It, Too. “You can send weather balloons into the stratosphere, collect microbes, see what’s up there. You can work on a project, and you don’t have to justify to anyone that it’s going to make a lot of money, that it’s going to save mankind, or even that it’s feasible. If you had spaces like this all over the world, it could really change the perception of who’s allowed to do biotech.” This is revolutionary, and — some think — scary. The Wall Street Journal questioned whether it could be used for terrorism. But what if it could be used to search for new solutions for pressure wounds? Or UTIs? Or the Holy Grail — restored function?
These labs are operating all over the world and they share their results with each other. “The spirit of these labs, it’s open, it’s positive,” said Jorgensen.
Crowdfunding — It Virtually Pays for Itself
No need for an expensive fundraising firm or a well-heeled PR department anymore. Now spinal cord organizations can create an account on a site like Kickstarter or Indiegogo and voilà! — capital for cure research.
“I have two campaigns,” says Perry Cross Spinal Research Foundation’s Melissa Brown, about her Australian organization’s fundraising-for-a-cure efforts.
One is done via Chip In Australia and the other uses the popular Indiegogo. “The first one in 2012 on Indiegogo was more a trial, but with the second campaign I had more time to plan and focus on our objectives. I also took the donors on the journey with us this year by posting ‘project diaries.’ The donors loved it and the feedback this year was amazing!”
And this strategy is useful on a much more personal level, too, to help wheelers meet the extravagant costs of necessities like accessible vans and home mods. One site, www.Pozible.com, features pages for wheelchair users trying to raise funds for everything from ski trips to specialized equipment. Some are more successful than others, and there are tips and techniques that can bolster a page’s chances of meeting its goal.
A good “how-to” resource for using crowdfunding to pay off medical bills or for other disability-related expenses is U.S News and World Report’s online article, “How to Raise Money for Medical Bills.” It explains everything from why it’s important to talk with a tax professional to what percentage to expect these sites to take off the top of what you raise.
But that’s true no matter what fundraising method is used. Some will flop miserably and some will exceed expectations.
For all of its exciting newness, it’s important to recognize that crowdfunding and crowdsourcing are just tools. Powerful tools that we’re just learning to use for sure, but with as many limitations and utilizations as any other hanging on the pegboard. As we learn better how to wield them, though, who knows what we will build.
To Learn More
• “Daniel Kraft: Medicine’s Future? There’s an App for That,” a TED Talk; www.ted.com/talks/daniel_kraft_medicine_s_future.html
• “Ellen Jorgensen: Biohacking: You Can Do It, Too,” a TED Talk; www.ted.com/talks/ellen_jorgensen_biohacking_you_can_do_it_too.html
• Genspace, New York City’s Community Biolab, genspace.org
• “Scientists Pass the Hat for Research Funding,” www.npr.org/blogs/health/2013/02/13/171920261/scientists-pass-the-hat-for-research-funding?ft=1&f=1001
• “How to Raise Money for Medical Bills,” money.usnews.com/money/personal-finance/articles/2013/05/02/how-to-raise-money-for-medical-bills
• “How to Create a Kick Ass Crowdfunding Campaign,” suitcaseentrepreneur.com/media-and-pr-tips/how-to-create-a-kick-ass-crowdfunding-campaign-and-make-your-dreams-come-true