Rare Disease Report

CrowdMed: Is crowdsourcing the future of rare disease diagnosis?

MARCH 20, 2017
RDR Staff

Is a San Francisco startup making the case for personalized medicine? CrowdMed is an online medical platform connecting patients with difficult medical conditions to the collective minds of the medical case-solving community.

CrowdMed founder, Jared Heyman, launched the San Francisco startup in 2013 after his sister Carly went undiagnosed for years. It took a team of medical experts from a variety of disciplines to diagnose her condition as a rare genetic mutation-- "Fragile X-associated primary ovarian insufficiency" (FXPOI).

What if everyone had access to a teams of people willing to work together to put the patient first? What if someone could turn three years of suffering into three weeks? And what if a patient could get access to these professionals without the $100,000 pricetag?

Heyman decided to find out. First and foremost a tech company, Heyman describes the software that drives CrowdMed as the “optimal mechanism to pull the wisdom out of [the] medial detective community and match up the right knowledge with the right patients.”

By filtering out “noise” from “signals,” or good answers, CrowdMed’s patients only receive the most useful information.

How does it work?

The idea of a team of interdisciplinary doctors coming together to solve medical cases is not a new one. In fact, there are eight seasons of a television show to back up this Sherlockian-style of medicine. But unlike the series, the qualified medical professionals are not popping vicodin nor are they performing unnecessary invasive procedures. These “Medical Detectives” include licensed physicians, scientists, andmedical students. The teams work under a Case Moderator who is a vetted licensed physician.

Patients entering the CrowdMed platform have the option to enter under payment models that range from $199-$749 per month. All cases can be submitted anonymously through filling out the patient questionnaire and uploading any relevant medical information. The patients have the option to include personal struggles that arise from their undiagnosed conditions.

When the process is done, the patient will receive a detailed report to bring back to their doctor containing the best suggestions compiled from the “Medical Detectives.”

Finding answers with CrowdMed

“When you have eliminated the impossible, whatever remains, however improbable, must be the truth.” Borrowing a classic quip from Dr. House’s predecessor, the Sherlockian quote could serve as the mantra of CrowdMed’s medical community.

Take the case of “Georgiann.” Undiagnosed at 29 with pain that affected her legs and arms, she went nearly three decades looking for a cure for her recurring muscle aches. It took CrowdMed less than one month to suggest that Georgiann suffered from an iron deficiency. Years of pain and suffering disappeared with a simple iron supplement regimen.

A step towards personalized medicine

Granted not all cases are going to be that simple.

But Georgiann is just one of hundreds of patients who benefited from the collaborative case-solving that CrowdMed offers. When responding to the patient survey, "Did you get insights on our site that led you closer to a correct diagnosis or cure?” 70 percent answered yes.

While CrowdMed believes in the power of community, they are not going to take the place of your primary care physician. “Our job is to produce a short list of thoughtful and insightful diagnostic and/or solution suggestions for a patient to discuss with their physician, but only the patient’s physician can provide a definitive diagnosis and treatment plan.” Crowdsourcing diagnoses is a long way off from being accepted across the medical profession. But CrowdMed is on the path to revolutionize the way rare diseases are diagnosed and treated.

Would you trust your medical information to CrowdMed?

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