For the last five years, CrowdMed has helped thousands get valuable information about rare and difficult to diagnose conditions.
Five years ago, Deanna Brownlee was at her wit’s end. The 29-year-old felt like her body was filled with wet cement. Resting made her more tired. Her hair was so thin, people asked if she was going bald. Even when she hadn’t injured herself, the resident of Macon, Georgia found dark bruises stamped across her body. And then there was psoriasis, brain fog, chest pain, joint and foot pain, and burning cramps deep inside her arms and legs.
Brownlee didn’t know what was making her feel so ill. Neither did the 20 doctors she’d seen over the past decade. (One suggested her symptoms were all in her mind.) So when she heard about CrowdMed — a website where “medical detectives” offer to figure out the root cause of elusive ailments — Brownlee uploaded her medical records.
She didn’t have to wait long for a response. Within days, CrowdMed’s medical detectives came back with a reason Brownlee might be feeling so sick: Ehlers-Danlos Syndrome, an inherited condition that affects the connective tissue between the skin, bones, blood vessels, and other parts of the body.
Money is tight for Brownlee, so she hasn’t been able to pursue treatment. Still, she’s just grateful to finally have an answer. “After chasing a diagnosis for more than 10 years, it was such a validating experience,” she said. “Just when I felt like I was drowning, CrowdMed appeared in a lifeboat.”
If you’re a patient with an easily discernable condition — strep throat or a broken arm — doctors know how to treat you. The same isn’t always true for people with extremely rare diseases or symptoms that linger, but aren’t life-threatening.
Like Brownlee, these unfortunate outliers of the healthcare system can bounce from doctor to doctor for years. As each one orders tests, prescribes medications, and schedules procedures, costs mount, symptoms may worsen, and hopelessness often rises.
Enter CrowdMed, an online medical crowdsourcing platform whose mission is to get patients closer to their right cure or treatment. Its premise is simple: If you don’t know what’s wrong with you, and neither does your current doctor, there’s a good chance someone else on the internet does.
The site works like this: A patient with an unresolved case completes a set of questions about their health, then anonymously uploads their records and test results so they can be examined by CrowdMed’s medical detectives.
Spread out across the globe and numbering around 20,000, this group includes not only verified medical professionals like physicians, psychologists, midwives, and dentists, but people who’ve struggled with illness themselves, medical students, or quite possibly “Good Doctor” fans who relish a good medical mystery. (Detectives’ identities are kept secret.)
In an online chatroom and through correspondence with the patient, detectives collaborate to come up with possible diagnoses and solutions. Every case is moderated by a licensed physician. Then, taking into account each detective’s previous successes, an algorithm predicts how accurate their suggestions are likely to be and ranks them as such.
“We’re not treating patients or making official diagnoses,” said Dr. Gregory Denari, a retired family physician in San Jose, California, who serves as a medical detective and advisor for CrowdMed. “We’re making suggestions. Whatever we come up with needs to be independently verified by a doctor.”
When Madeleine Gerlach, 25, began having intense pelvic pain in 2013, she felt sure she had endometriosis, a condition in which the lining of the uterus spreads to other organs. Her doctor dismissed the idea, so Gerlach turned to CrowdMed.
The majority of medical detectives agreed: She most likely did have endometriosis. That reassuring chorus convinced Gerlach to pay out of pocket for a second opinion. Sure enough, a procedure found nine endometrial growths on her ovaries and bladder.
“CrowdMed helped me find my voice and advocate for myself,” Gerlach said. “The people putting in their two cents about my case probably weren’t all doctors, but you don’t have to be a fancy doctor to help someone. It was a relief to know someone was listening to me.”
In the past five years, CrowdMed’s solved more than 2,000 medical mysteries. Before joining the site, the average user has struggled with illness for over seven years and consulted over eight different doctors. The cost for languishing in that medical limbo? $68,000.
Jared Heyman, CrowdMed’s founder and CEO, understands the toll that being sick — and not knowing why — can take on a person’s life. In 2003, his teenaged sister, Carly, began having a constellation of unsettling symptoms. She gained 50 pounds, experienced suicidal thoughts, and slept 14 hours each night. Always an overachiever, Carly dropped out of high school. Jared’s parents racked up six-figure medical bills seeking an answer.
It wasn’t until Carly saw a team of experts at the U.S. National Institutes of Health (NIH) that she was diagnosed with Fragile X-associated primary ovarian insufficiency (FXPOI), a rare genetic mutation found in just 1 of every 15,000 people.
Heyman, an internet tech veteran, saw an opportunity to help others the same way his sister finally found relief. “Traditionally when you’re sick, you see one doctor at a time. If they can’t figure it out, you’ll see someone else,” he explained. “At NIH, Carly saw half a dozen specialists, all from different backgrounds, under one roof. We created CrowdMed with the same team-based approach.”
“Instead of pulling on the experience and expertise of one individual, what if you opened it up to the experience of many?” asked Danyell Jones, chief marketing officer of CrowdMed. “It’s like that saying: ‘two heads are better than one,’ except we don’t just have two. We have an entire community.”
About a week after users sign up on CrowdMed, responses from medical detectives start coming in. On average, two months is the length of time it takes to hit on the most viable suggestion.
Independent research shows that 75 percent of the time, CrowdMed’s detectives get a person’s diagnosis right. Using the site also results in 28 percent fewer medical costs, 32 percent fewer trips to specialists, and 45 percent fewer high-cost medical procedures.
Tapping into the collective wisdom of a crowd is an “interesting approach,” said Dr. John S. Cullen, FAAFP, a family physician in Valdez, Alaska and president-elect of the American Academy of Family Physicians. Still, he’s skeptical that medical detectives’ arms-length interaction can compete with a doctor who’s able to conduct an in-person exam.
“Diagnosis is a full-contact sport,” Cullen said. “How does a patient sound? How are they sitting? What are they wearing? How do they smell?” He recalled a time he walked into an exam room and within seconds, knew that a 4-year-old had leukemia. Blood tests proved his instinct correct. Many of his colleagues, said Cullen, have similar stories.
Still, “the healthcare system is so optimized around efficiency that many patients feel rushed,” said Heyman. “Doctors are under pressure to see many patients in a short amount of time. That’s bad enough for a checkup. Imagine if you have a disease that’s hard to diagnose.”
Before CrowdMed’s official launch, Heyman wanted to test a real-world case. He chose that of his sister, who had already started treatment and was doing well. Carly’s files were anonymously uploaded to a crowd of about 100 detectives. Within a few days, FXPOI was flagged as the most likely diagnosis.
“Carly joked, ‘What the hell? Why didn’t you do this three years ago?’” Heyman recalled. “I thought, ‘This crazy idea might just work.’”
When Aldea Boaz, 43, started having foot pain one day in 2012, she blamed it on her new flats. But once she kicked off her shoes that evening, the Atlanta mom was horrified to find a half-inch hole in her foot, so deep she could see bone.
Despite being seen by her family physician, an urgent care clinic, and in the ER, the wound took months to heal. During that time, Boaz lost feeling in her feet and calves. Unable to pinpoint the reason why, her doctor prescribed opioids.
Boaz could no longer work, drive, or get around her home. “I had to crawl up my stairs,” she said. Still, the pain persisted.
Within a week of joining CrowdMed in 2016, a medical detective asked a simple question: “Have you seen a podiatrist?”
Boaz did and was diagnosed with tarsal tunnel syndrome — the nerve along the bottom of her foot had become compressed. Within weeks of starting treatment (injections that reduced inflammation and provided pain relief) Boaz was mobile again.
“I hadn’t been able to do the dishes in years, or walk my dog and I could,” she said. “I wasn’t dancing, but pretty close to it.”
Recently, Boaz’s pain has returned, spread, and worsened. Once again, she feels she can’t get answers from her doctors. “There’s no solution,” she said. “Only pain pills.”
To deal with mounting medical costs, Boaz and her husband put their house on the market. Once the sale’s final, she can afford to join CrowdMed again. (Monthly rates range from $149 to $749.)
“[The medical detectives] truly want to help,” Boaz said. “They can look on their own time, do research, and give an honest answer. They care. It’s from the heart, that’s what I feel.”
Once CrowdMed detectives suggest a diagnosis or treatment, a patient isn’t immediately on the path to feeling better. They’ve still got to run the gauntlet of their healthcare system.
“The greatest obstacle a patient could face is their provider’s resistance to accepting or even reviewing and discussing the information, even if it’s from a reputable source,” said Karen Schechter, a healthcare consultant and director of the practice management program at Maryville University’s College of Health Professions.
Ideally, patient and provider have a relationship built on mutual respect — enough that they can listen to each other and collaborate on decisions about care. But that’s not always the case.
“It’s the provider’s prerogative to accept or reject the information [brought to them], but in the end, it’s the patient’s decision how they want to handle their own care,” Schechter said.
Seeking a second opinion or moving to a different provider are always options.
Another hurdle to overcome is the knotty “flow chart” of protocols insurers typically follow. (For instance, before a patient can do Z, they often need to do X and Y first.) Hiring a patient advocate can help. Some hospitals and large medical practices even provide one free of charge.
“Their goal isn’t necessarily to circumvent the protocols,” said Schechter, “but to educate patients on the process and help them communicate with providers along the way.”
A patient advocate can also help access medical information, put together relevant questions for doctors, review and negotiate bills, and even help make medical decisions.
What they can’t do? Help patients afford healthcare in the first place.
“Money is my biggest barrier at this point,” said Brownlee, who still experiences painful symptoms caused by her EDS. “[It] moves mountains in the medical industry. If one doctor didn’t listen, I could just go to another one. If they didn’t do the right test, I could just pay for another. I’d have all the medication I need each month, and people would be so much more willing to help me.”