How Crowdsourcing Solves Medical Mysteries
The CrowdMed start-up lets retired doctors help desperate patients
Patients with difficult-to-diagnose symptoms can bounce from specialist to specialist for years, getting dissatisfying or incomplete answers about their health problems and spending lots of money in the process.
Doctors “are expected to be House,” says Jared Heyman, referring to the genius fictional doctor, Gregory House, of the eponymous TV show. In each hour-long episode, Dr. House uses his uniquely powerful intellect to diagnose a patient who has confounding symptoms.
But in real life, solutions often come from harnessing the power of the crowd. That’s why Heyman founded CrowdMed, a new service that brings doctors — many of them retirees with years of experience and wisdom — together with laypeople to crowdsource difficult diagnoses.
“Groups of people are much smarter than individuals,” says Heyman.
Users post their symptoms on CrowdMed and their case is “live” for 30 days. During this time, the site’s “medical detectives” — all volunteers — offer possible diagnoses, discuss with each other, ask questions of the patient and ultimately bet points on the right diagnosis from the suggestions offered by their peers.
At month’s end, CrowdMed sends the diagnoses with the most points to the user, who can then discuss the results with his or her doctors. Patients can incentivize the team’s medical detectives by offering a cash stipend. This can help grab the detectives’ attention, but it is not required.
“The average patient [who uses CrowdMed] has been sick for eight years, seen eight different doctors and incurred around $50,000 in expenses related to their ‘medical mystery,’” says Heyman. “More than 50 percent of users say that CrowdMed has brought them closer to a cure.”
Helping Retired Doctors Give Back
Patients aren’t the only ones benefiting from the service. When Dr. Greg Denari retired in January 2013, he missed using his skills to help patients solve problems. “As a family practice physician, I always enjoyed taking a first crack at a diagnosis,” says the 67-year-old Bay Area resident. “It was like being a detective.”
Denari knew he didn’t want to go back to the day-to-day of patient care, but he craved intellectual stimulation and an outlet for his years of accumulated wisdom.
Working for the service allows him to help struggling patients, sidestep tedious aspects of clinical care (like wrestling with insurance companies) and put his vast knowledge to use.
The benefits were good, too: The schedule was endlessly flexible and he could work in his pajamas. Medical detectives can earn small financial incentives — Denari donates his to charity. He became so active on the site that today he serves as an official medical adviser for the company, devoting about 10 hours a week to the project.
“Some of our best detectives are retired physicians,” says Heyman. They have decades of knowledge, he notes, and “they want a way to apply their knowledge from retirement.” The project also gives them a way to learn from their peers and keep their skills sharp.
There’s also the reward of making a difference in people’s lives, says Denari. “Patients have a lot of appreciation for you looking into their problems.”
4 Tips for Users
Heyman offers these four tips for getting the most out the service:
1, Come armed with information. Users who get the most out of the service have diagnostic tests they can share and often have two or three diagnoses that have already been ruled out. “Timing is important,” says Heyman.
2. Do a really good case write-up. “We have a detailed questionnaire,” says Heyman. But it helps even more if patients go the extra mile and explain all their symptoms — the how, the when, the severity and any correlating factors (e.g., it hurts only when I eat, I only feel it when I lay down,) — in detail. They’re also encouraged to upload any diagnostic test results they have in to their case file. Adds Heyman: “We need good clues.”
3. Stay engaged during the 30-day investigation period. Detectives have 30 days to put their skills to use when solving each medical mystery. They will often ask patients questions during this time; the more prompt your response, the more information they have to work with before the case closes.
4. Be kind. While there are some built-in financial incentives for doctors who participate as detectives, they are all volunteers. So it helps — as it does with so much in life — to be nice.
One important note: While both the patients’ and doctors’ identities are kept private on the site, the group is not protected by HIPPA (the Health Insurance Portability and Accountability Act), which helps patients protect their confidential health information.