Mystery illnesses being solved by a crowd?

Mystery illnesses being solved by a crowd? »Play Video

Mystery illnesses being diagnosed by medical detectives?  Sounds like the plot of a TV show, right?  But in fact, it's the idea behind a new online tool, where people win money for figuring out why you're sick.

"It was really a dark period for (my sister) and our family," remembers Jared Heyman, founder of the website called CrowdMed.

Heyman's sister spent three years suffering from a undiagnosed medical condition. She experienced severe depression, anxiety, and a 50-pound weight gain. She was lethargic, sleeping 14 hours a day.   Only after seeing two dozen doctors and racking up a 6-figure medical bill, did she finally get a diagnosis.

Thinking there had to be a better way, Heyman came up with CrowdMed.

"A patient with an unsolved medical mystery can submit their case, and we get a crowd of several dozen medical detectives to collaborate on solving it, often coming up with better answers than by seeing an individual physician or specialist," explains Heyman.

The site uses a patented prediction method, employed in market research.

Here's how it works:

  • A patient fills out a questionnaire - providing symptoms, medical history, family history, diagnostic test results, and imaging.
  • The patient can submit a case for free or offer a reward for people to work on the case. The average reward is $220.
  • The case is then reviewed by the medical detectives. Cases don't need to be life-threatening; many of them have to do with chronic pain.

There're a total of 200 active medical detectives - 60 percent are medically-trained, mostly medical students, current physicians, and retired doctors, and the other 40% have no medical education but an expertise in a particular area, perhaps from being patients themselves.

  • After looking at the evidence, detectives can propose a diagnosis or throw their support behind someone else's idea.  It's like betting poker chips.  
  • In the end, the supporters of whichever diagnosis gets the most bets split the reward.
     

Medical detectives are not vetted on their credentials.

"(But) our system is designed to give a louder voice or more influence on the site to people who have proven to be better medical detectives," explains Heyman.

"It is very valuable to get more voices," says Dr. Eran Klein, a neurologist who teaches medical ethics at OHSU.

While he says CrowdMed has more positives than negatives, patients need to manage their expectations and consider their privacy.

"If that company is sold later, if that company goes bankrupt later, if that company changes its privacy policy in the future, then that information doesn't have the same protection as our protected health information has," warns Klein.

CrowdMed detectives can't solve every case, but Heyman says 80 percent of those patients contacted say their top diagnoses were accurate.

And Heyman's sister? He used her case to test the website.

"We found, sure enough, in just 3 weeks, a crowd of several hundred people were able to solve her case, come up with the same correct answer that it had taken the medical system three years to come up with," says Heyman.

The correct diagnosis was Fragile X-associated Primary Ovarian Insufficiency, or FXPOI.

Heyman believes that there can be a significant cost savings to both patients and the medical system at large.

CrowdMed is not meant to replace your doctors; it's for those situations where your doctors don't have any answers.