Does Crowdsourcing Have a Future in Solving Medical Mysteries?

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 - Crowdsourcing

For three years, Carly Heyman visited numerous doctors, searching for answers on why she was feeling so sick. She spent thousands of dollars and hundreds of hours going from specialist to specialist, all of whom could not help her. Her symptoms persisted. Finally, in 2006, she received the correct diagnosis. She was told she had FXPOI (fragile X-associated primary ovarian insufficiency), a rare disease that effects women. After receiving hormone replacement therapy, she is now healthy.

When Jared Heyman, Carly’s older brother, thought of ideas for creating a company, he reflected on his sister’s ordeal. In 2013, he created CrowdMed, an online resource where patients or their caregivers can anonymously submit their symptoms and medical information. They then receive feedback from people who work in the healthcare industry and other patients who may have similar issues. Approximately 10 percent of the cases on CrowdMed involve heart or cardiovascular symptoms.

“I wanted to create a mechanism where people like her could tap into the wisdom of crowds and have their case solved online much more quickly and much less expensively and with much less trauma online,” Heyman says.

Shifting views, emerging answers

The launch of CrowdMed coincided with a shift in the general population and in healthcare toward utilizing the internet and social networks to research and identify medical conditions.

In January 2014, the IMS Institute for Healthcare Informatics released a report that found 72 percent of U.S. adults who had online access used social networking sites such as Facebook, Wikipedia, Twitter and YouTube in 2013, up from 8 percent of adults in 2005. The authors also mentioned that physicians spend twice as much time using online resources when making clinical decisions compared with print publications. On average, physicians spend three hours per week watching online videos for professional purposes.

More than three-quarters of people seeking health information online begin by accessing search engines such as Google, Bing or Yahoo, according to IMS. They then commonly click on Wikipedia, the online encyclopedia that anyone can edit. IMS found that nearly half of physicians who go online for professional purposes use Wikipedia.

As he developed CrowdMed, Heyman saw Wikipedia as a model and inspiration. For decades, encyclopedia publishers such as Britannica hired experts to write on a given topic. With Wikipedia, people can write and edit entries regardless of their qualifications.

“If you had told that idea to the Britannica editors before Wikipedia, they would have laughed you out of the room,” Heyman says. “They would say that would never work.”

CrowdMed uses a “crowdsourcing” approach to medicine, a term that was created in 2005 by editors at Wired magazine and has been applied to numerous industries. In fact, Heyman had implemented crowdsourcing for market research purposes in Infosurv, a survey research company he founded in 1998.

Anyone can submit a case to CrowdMed, which does not screen cases or implement qualifications for patients or caregivers. The average CrowdMed patient has been sick for eight years, seen eight doctors and incurred more than $10,000 in medical expenses.

After patients pay fees that range from $99 to $249 per month for a minimum of two months, they fill out a form that details their medical background, including symptoms, current medications, medical history, family history and body symptoms affected. Patients then receive questions from “medical detectives,” a term CrowdMed uses for people who sign up to offer advice, diagnoses and solutions for patients. Detectives can search the website and filter the cases by categories such as a patient’s age, gender and symptom, including heart and cardiovascular.

Approximately two-thirds of detectives work in or study medicine. These include doctors, nurses, medical students, researchers and scientists. Of the remaining one-third, a large proportion is made up by patients who have had the diseases mentioned on the website.

Patients and medical detectives are all granted anonymity. They exchange messages through the CrowdMed website and discuss the usefulness of the comments. If patients or detectives notice comments that they think are incorrect or misleading, they can share that with the community.

“Basically, it’s a very interactive process between the patients and the detectives and also amongst the detectives,” Heyman says.

More than 15,000 detectives have signed up, but only around 2,000 are active. An average of 22 detectives work on each case. They are not paid to participate, but patients are allowed to offer a cash reward on their case, which is distributed to the detectives who offer the best advice. The average reward is $350, according to Heyman.

“Any medical detective can participate in any case, but because all of the incentives are performance-based, no one would really have an incentive to participate in a case unless they were pretty confident that they could actually provide meaningful insights,” Heyman says. “Detectives end up opting in or self-selecting for only those cases that they’re confident they can help solve.”

As of July 2015, CrowdMed had resolved more than 1,000 cases. Heyman says the website has a better than 60 percent success rate. The company defines success as patients indicating detectives helped them get closer to a correct diagnosis or cure.

Still, some doctors and healthcare providers are hesitant to use CrowdMed and other online services in which people who are not trained medical professionals can offer advice and guidance. For instance, although Wikipedia is now one of the world’s largest websites, researchers question the accuracy of its information.

In May 2014, a study found there were statistically significant differences in Wikipedia articles and peer-reviewed sources for nine of 10 costly medical conditions (The Journal of the American Osteopathic Association 2014;114:368-373). The conditions included coronary artery disease, hypertension and hyperlipidemia.

“Caution should be used when using Wikipedia to answer questions regarding patient care,” the authors wrote.

So far, the reaction to CrowdMed in the medical community has been mixed.

“Some love what we’re doing and others find it threatening,” Heyman says. “But from a legal and regulatory standpoint, we consulted with a lot of attorneys and we’re well within what’s allowed by law.”

As of now, CrowdMed is a direct-to-consumer service in which people pay subscription fees, although the company hopes to partner with health plans in the coming years. Heyman says the number of cases submitted has increased around 20 percent each month, and he expects continued growth.

“We think the wave of the future is more of a community-based approach where there’s lots of people from all different backgrounds and specialties all working on the same case at the same time from all across the world,” Heyman says. “We’ve proven that system and that philosophy just works much better than having one doctor visiting with the patient at a time and working in isolation. I think crowdsourcing in medicine is definitely trending upward.”