Sacramento patients crowdsource medicine and more on sites like CrowdMed

Patient “Hilde” presented the online diagnosticians with a stumper: The 48-year-old Sacramento woman suffers from what she describes as a significantly diminished sense of taste.

Sweeter foods, especially, had lost their richness, she explained. “I can even differentiate herbs … but nothing tastes flavorful,” she wrote. “It’s as if I can recognize you and tell you the color and style of your clothes, but my ability to see patterns or textures is fuzzy.”

For almost five years now, brick-and-mortar health-care establishments have been unable to provide answers. So Hilde turned to a relatively new website that marshals people’s growing tolerance for crowdsourced solutions to agonizing medical mysteries.

Since launching in April 2013, CrowdMed has hosted more than 400 cases from across North America and Europe. People in pain and discomfort fill out online profiles detailing their symptoms, medical histories, lifestyles and any medications they’re taking, and can offer cash rewards to sweeten the odds of a helpful hypothesis.

After their free 30-day trials, users are emailed individual reports with the highest-scoring possible diagnoses at the top, followed by a list of every other suggested answer. They’re instructed to bring their reports to their doctors to collaborate on the course forward.

CEO and founder Jared Heyman said most doctors actually welcome the results, but allows that there is another camp. “The other reaction we get is, ’Oh no, something from the Internet,’” he laughed.

Representatives from Kaiser Permanente and Sutter Health declined to comment.

It may sound insane, asking strangers for medical advice, but CrowdMed officials say their buzzy Silicon Valley startup has proven faster, cheaper and more accurate than traditional medicine.

“Of the patients we’ve been able to contact, 80 percent reported receiving accurate diagnostic suggestions, and 50 percent said that we brought them closer to a correct diagnosis or cure,” said spokeswoman Ann Murray.

CrowdMed surveys its users at the end of 30-day free trials and 90-day paid trials.

According to internal figures, the average CrowdMed user was sick eight years, consulted eight different physicians and spent $65,000 by the time he or she came to the site.

Those whose cases haven’t been satisfactorily cracked during the free 30-day time frame can keep profiles up at $99 a month or purchase 60-day or 90-day subscription packages.

On the other side of the equation, anyone can sign up to be a medical detective, but only those detectives who offer correct diagnoses earn points that increase their ratings and, thus, influence.

That point system determines how much weight the website’s algorithms give to certain diagnoses and also which detectives are eligible for a share of any offered reward. So does the level of consensus among detectives.

“We give patients every diagnosis suggested,” Heyman said, but tell patients they should only put their confidence in the most likely ones listed at the top. “We want to strike a balance, because you never know where that needle in a haystack can come from.”

The website is the creation of the 36-year-old Heyman, who watched his younger sister struggle with an undiagnosed genetic mutation for three years. As the story goes, the family cycled through two-dozen doctors and $100,000 in medical expenses without solving her immobilizing condition. Finally, in 2006, a team of experts diagnosed the young woman’s rare condition.

The family’s shared frustration eventually inspired the website that counts a Sacramento woman among its 133 currently active cases. The otherwise healthy Hilde has no allergies and hasn’t undergone chemotherapy. She even passed a smell test at an ear, nose and throat clinic. A zinc prescription did nothing to revive her taste buds.

“My attitude to date has been, ’if this is my chronic problem, I’m more fortunate that others,’” she wrote. “But I would still like to get at the root cause and try to solve it.”

At press time, her case had been on the website 82 days, with submissions from four medical detectives.