CrowdMed: Would you trust Internet sleuths to diagnose rare disease?
SAN FRANCISCO — Before her bike accident, Catherine Tan was a perfectly healthy teenager. But one morning, she fell off her bicycle on the way to school and cracked her head so hard on the pavement that her helmet split in two.
In the years that followed, Tan suffered from chronic migraines, heart problems and a spinal injury. Tan saw about 70 different specialists, racking up more than $250,000 in medical bills over the course of six years.
Tan recalls the doctors prescribing her a cocktail of medications. But none could figure out why her symptoms persisted for so long after the accident.
"We expected the doctors to know everything," said Tan, 22, a sophomore at Williams College. "They really didn't."
That all changed one morning when her mother suggested Catherine try out a new website called CrowdMed. When patients submit a case on CrowdMed, they begin receiving suggestions from a dozen or so "medical detectives": doctors, nurses, medical students, Eastern Medicine practitioners and patients with similar ailments.
CrowdMed's founder Jared Heyman started the site in 2012 after watching his parents spend thousands as his sister Carly suffered for three years with debilitating symptoms, before being diagnosed with a rare disease. Like Carly, most of the patients on CrowdMed have found little success with in-person medical visits or websites like WebMD. Heyman said the average patient on CrowdMed has already spent 375 hours searching the web for answers.
It costs anywhere from $150 to $350 for a patient to submit their case to CrowdMed's medical detectives, who spend several months reviewing it and making suggestions. The patient might also choose to offer a monetary reward for the sleuths who crack the case. Those who can't afford the fee can apply for a scholarship.
The medical detectives who reviewed Tan's case suggested she might have a complex headache of sorts and referred her to the Cleveland Clinic's Center for Headache and Facial Plan Clinic, otherwise known as "IMATCH."
"They didn't diagnose me, but they pointed me in the right direction," said Tan, who would later be weaned off her meds at the Cleveland Clinic and diagnosed with a post-concussive complex migraine syndrome.
Tan credits CrowdMed with kick-starting her recovery. But despite a string of successes, the website has received some criticism from the medical community. Some doctors are far from convinced CrowdMed is the right approach for patients with complex, misdiagnosed or unsolved medical cases.
"As untrendy as this sounds, behind clinic doors, these patient-physician relationships continue to be an incredibly powerful force," said Arshya Vahabzadeh, a Harvard Medical School-based physician and a resident psychiatrist at the Massachusetts General Hospital.
"People need things to be named," said Jordan Shlain, a general practitioner from San Francisco. "It's part of our wiring." Shlain said some medical cases on CrowdMed may truly be medical mysteries, which he calls "fascinomas." But others might be "cyberchondriacs" who use the Internet to research any and all symptoms of a rare disease, which results in prolonged anxiety.
"Patients will find a diagnosis, get convinced and look for a doctor who will verify it," Shlain said.
Kyle Walker, a medical detective from Ohio, got into CrowdMed for the "mental challenge" of solving tricky cases. Walker is a general practitioner who specializes in pain management and orthopedics. He has pocketed some $3,000 in prize money this year, most recently for diagnosing a patient with neurogenic cough.
Walker occasionally spots patients on CrowdMed who might be cyberchondriacs, but he avoid those cases. Instead, he said the bigger problem is that some patients on CrowdMed aren't satisfied with a mundane diagnosis. And medical detectives will pander to them to win the prize money. "I've seen patients follow a diagnosis that is super unlikely," he said.
CrowdMed is adapting quickly to its critics. Walker shot off an email to the team expressing his concerns. CrowdMed responded quickly, and now, patients are encouraged to avoid influencing the medical detectives in any way.
Limitations aside, CrowdMed's methods have already solved hundreds of medical mysterious. In Tan's case, it was enough to receive a virtual pat on the back and some good advice.
"I remember this one medical detective who would write us regularly, just telling us to keep going," recalled Catherine's mother, Julie. "My daughter really needed a community. I needed it too."
Follow USA TODAY contributor Christina Farr @chrissyfarr