How a Crowdsourcing Site Helped a Concord Resident Solve Her Medical Mystery
When Catherine Tan was 15, she fell off her bike on the way to school and landed on her head. Doctors said she might have a concussion, but dismissed the possibility. Then soon after, the once healthy teenager began getting blinding headaches, cognitive impairments, eye problems, and a laundry list of other symptoms.
For the next six years, the Concord resident’s life was a steady stream of unsuccessful doctor’s visits, misdiagnoses, and medical bills totaling almost $250,000. “People would come to the end of the road and say, ‘I just don’t know,'” remembers Catherine’s mother, Julie Davidson. “The medical establishment was by and large horrible. Because it is such a siloed system of treatment, if you have anything going on that crosses disciplines, people don’t know how to communicate with each other.”
The two traveled around the country looking for a diagnosis, with no success. Then, five months ago, Davidson posted Tan’s story, along with a $400 reward for a correct diagnosis, to CrowdMed, a website that aims to solve medical mysteries by crowdsourcing suggestions from users. At press time, Tan had finally been diagnosed correctly by a CrowdMed member—a head injury and resulting brain damage—despite doctors’ original assessment after her accident. She is currently a week into treatment at the Cleveland Clinic for headache management.
“I think [CrowdMed] is a community of people who hold out hope for each other, and of young medical professionals who are reading and thinking in much more creative ways,” Davidson says. “It really was thanks to CrowdMed helping us hang in there, as much as anything else.”
Though it’s incredible, CrowdMed founder Jared Heyman says Tan’s story isn’t all that unique; the average case, he says, is solved by CrowdMed’s community of “medical detectives” in only 75 days. “The fact that we can do more in two or three months than the medical system in several years is pretty compelling,” he says.
Further, CrowdMed’s members do not have to be doctors, or even involved in healthcare at all. Anyone can sign up to be a medical detective, and the site then assigns them an influence rank over time based on how accurate and helpful their diagnoses have been in the past. “We believe that the most credentialed people are not always the best when it comes to solving cases,” Heyman says. “There’s a lot of med students out there and nurses and chiropractors and nutritionists who don’t have MDs by their name, and are actually very good at solving tough medical cases.”
Davidson says she never worried about entrusting Tan’s care to a network of strangers, in part because the site was so well moderated, but also because CrowdMed members were more attentive than the doctors they had seen for years. “In this world of silos,” Davidson says, “CrowdMed gives you a community that’s professional, that’s monitored safely, and that is constructive, both medically and emotionally.”
Now, with two weeks left in her intensive treatment program, Tan, now 21, plans to return to Williams College in the fall, and do something she hasn’t been able to in six years: plan for the future. “She’s going to be able to really think about what she wants to do with her life, which she’s had to put on hold for all of these years,” Davidson says. “Her focus has really been on, how do I get through today?”