In 2003, Carly Heyman fell ill with some bizarre symptoms. She was depressed, gained 50 pounds, would sleep all day but would wake up with a start from horrible nightmares and suicidal thoughts.
Her parents took her to doctor after doctor, who would only treat the symptoms but couldn’t identify the cause of her illness.
After several years of this, a doctor finally diagnosed her with the rare genetic disorder Fragile X syndrome—all it took was a simple hormone patch to alleviate her symptoms.
Inspired by Carly’s story and others like it, her brother Jared Heyman founded CrowdMed, a crowdsourcing platform in which people with mysterious medical conditions can tap into the power of the Internet to help them find a likely diagnosis.
And while this provides people who are ill and frustrated with opinions other than those of their specialists, crowdsourced diagnoses are far from foolproof, or even professional.
Here’s how it works: A patient like Carly pays $50 to create an anonymous patient account in which she fills out a medical questionnaire about her symptoms and medical history. Then her information is posted on the web site, and “medical detectives” can proffer a diagnosis. After a number of days, the patient receives a report with the best suggestions.
The “medical detectives” are physicians or people with no medical background who are interested in helping. These participants are ranked based on the number of diagnoses they get right (rather, the diagnosis that is most commonly suggested), as well as rankings from their peers on the site. People who get the diagnosis “right” share a cash reward.
On the one hand, a platform like CrowdMed makes sense—there are thousands of rare diseases, and it’s extremely difficult for one doctor (or even a team of doctors) to parse out which symptoms are caused by which obscure diseases in order to treat them.
On the other hand, asking for medical advice from a gaggle of uncredentialed Internet busybodies seems risky. And while founder Heyman tells Smithsonian, “Our patients understand that your suggestions do no constitute medical advice and only their doctor can provide a definitive diagnosis and treatment plan,” it’s easy to see how a patient might just forget that and show up to his doctor claiming to have found the definite answer to his medical maladies instead of merely a suggestion.