Share By Jennifer Cohen
When it comes to your health, everyone knows you’re supposed to get a second opinion. But what about a third, fourth or even a thousandth opinion? Should the “wisdom of crowds” play a role in healthcare?
First coined in 2006, the term “crowdsourcing” refers to openly soliciting ideas and solutions from diverse individuals, usually via the Internet.
“It’s basically models for using disparate groups of people to carry out tasks that would otherwise have been done by small groups of people,” said Jason Burke, founder of the Burke Advisory Group, which helps healthcare organizations innovate, manage information and analyze data.
These days, artists are crowdsourcing funding for projects, major brands are crowdsourcing television ads, start-ups are crowdsourcing logos, and expectant parents are crowdsourcing baby names. Still, it might seem surprising that crowdsourcing has also entered healthcare, a field defined by its rigorous training requirements, increased specialization and endless layers of regulation.
But the challenges currently faced by providers, patients and researchers cry out for collective problem solving on the largest possible scale, experts say.
“Within healthcare, there’s an acknowledgement that the cost structure we operate under no longer lends itself to single organizations trying to do it all themselves,” said Burke, author of the book, “Health Analytics: Gaining the Insights to Transform Health Care.”
“There are just insights you can’t get using your own data and your own people.”
Opening the Door to Innovation
Crowdsourcing in the healthcare realm often takes the form of open innovation initiatives, in which organizations in both the public and private sectors launch external appeals for ideas. InnoCentive, for instance, helps companies and nonprofits issue global “challenges” that invite participants from around the world to propose solutions to well-defined problems. The best submissions receive cash prizes ranging from $5,000 to $1 million.
“Our healthcare system is challenged, to say the least, in terms of keeping expenses down and dealing with an aging population,” said David Weisman, director of business innovation at InnoCentive. “People have realized that the old closed innovation model is not sufficient in a world of cost constraints and time pressures.”
InnoCentive works extensively in the healthcare field, partnering with pharmaceutical companies, advocacy groups and medical centers. In the last decade, its healthcare-related challenges have yielded significant advancement, Weisman said, including the identification of a biomarker for ALS — commonly known as Lou Gehrig’s disease, for the nonprofit Prize4Life — as well as an algorithm for predicting cancer survival rates for the Cleveland Clinic.
With traditional innovation, an organization’s researchers and developers can spend years plodding along a promising trail, only to reach a dead end, Weisman said. With crowdsourcing, “hundreds of people are going down multiple paths at once, and you only pay an award for paths that are productive,” he explained. “It changes the economics, it reduces the speed and it can result in outcomes you just wouldn’t have anticipated before.”
Among those outcomes are potential cures or treatment options for thousands of diseases, based on an open platform of ideas and shared knowledge, said Manish Gupta, Vice President and Director of the Xerox Research Centre India.
“Clinical decision support, based on data analytics, helps physicians make better decisions for diagnosis and treatment options for diseases. This area would benefit tremendously from ’crowdsourcing’ analytics solutions,” Gupta said.
“There are thousands of diseases that affect human beings, and it will be hard for a single organization to come up with accurate models for each disease,” he added. “Hence, an approach based on open collaboration is likely to work much better.”
Social Networks Link Patients, Drive Research
But open innovation is only one incarnation of crowdsourcing in healthcare. On social networking sites like PatientsLikeMe, individuals with certain health conditions share and compare their symptoms and responses to different treatments. Founded in 2004 with the goal of empowering patients, PatientsLikeMe makes money by selling this user-reported data to various partners, including drug makers and other companies.
Last year, PatientsLikeMe unveiled its Open Research Exchange platform, which allows researchers to develop, test and conduct surveys within the site’s community of 200,000-plus members.
“You can go out and get hundreds of people to fill them out in hours or even days,” said Paul Wicks, research and development director at PatientsLikeMe. Patients know best which questions accurately gauge their health, so they can play a vital role in designing measurement tools, he said.
Critics may question the reliability of crowdsourced patient data, but Wicks said that PatientsLikeMe takes steps to verify its members. A March 2013 study in the journal PLOS ONE found that self-reported data from site members with multiple sclerosis closely mirrored the results of in-person assessments.
Wicks envisions a future in which crowdsourcing platforms like PatientsLikeMe will integrate with electronic medical records, granting researchers full access to patient health information.
Disease Surveillance with Help From the Crowd
Experts are also turning to crowdsourcing as a faster alternative to traditional methods for predicting and monitoring infectious disease outbreaks. In Haiti in 2010, for instance, informal sources such as news reports, discussion groups and Twitter revealed a cholera outbreak’s dynamics two weeks before the health ministry issued its report.
Projects like HealthMap and NCB-Prepared analyze data from both informal and formal sources — World Health Organization alerts, local health departments, news aggregators, social media — to detect outbreaks and provide real-time surveillance.
“The impetus is to harness all the information being put on the Internet to alert people to the fact that there’s a signal of an outbreak,” said Anna Tomasulo, program coordinator at HealthMap. Flu Near You, another crowdsourcing initiative the company launched in 2011, predicts U.S. influenza outbreaks by sending out weekly surveys to more than 80,000 registered users.
According to Burke, these types of online tools demonstrate how crowdsourcing in health IT can meet the challenge of information overload while capitalizing on abundant data.
“We’re at a place where the rate of data being generated about healthcare and patients and research far outpaces the ability of individuals to keep up with all that information,” he said.
(Portions of this article were originally published on HealthBiz Decoded, a Xerox-sponsored resource for providers, payers, employers and government agencies.)
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