Patients with a rare disorder often embark on a diagnostic odyssey that takes them from one doctor to the next until they are correctly diagnosed. The process can take years, causing them to put their lives and their families’ lives on hold, and often straining personal finances.
Now, a way to potentially avoid a diagnostic odyssey is available. It’s called crowdsourced medicine, a novel web tool which harnesses collective intelligence and may dramatically change the way in which rare disorders are diagnosed.
Instead of relying on one or even several doctors for a correct diagnosis, a crowdsourced healthcare platform leverages the knowledge and insight of thousands of medical detectives whose ranks are made up of doctors, healthcare professionals, medical students and others.
The concept is simple. Provide patients with a web tool they can use to upload information about their condition and let the medical detectives work the case, communicating among themselves and with the patient.
Patients pay a fee to have their condition reviewed online. In return they receive a list of potential diagnoses, ranked from most to least probable based on an algorithmic assessment and crowd opinion. The goal is to expedite the time it takes to find a correct diagnosis.
Dr. Joseph Gigliotti was a medical detective with CrowdMed, a provider of online crowdsourced medical expertise, while studying at the Geisel School of Medicine at Dartmouth. He said one of the things that excited him about crowdsourced medicine at the time was its future potential to help people get answers to their medical issues.
“The diagnostic process is a pattern-recognition process,” Gigliotti explained. “The problem is that any physician or care team only has a limited experience and a limited knowledge-base to draw upon. It would be illogical to expect that any medical team would know everything that’s out there to know.”
Dianna Cleaveland is a case in point. She says she struggled all her life with a medical condition doctors were unable to diagnose. In her adult years, she became increasingly ill and had to give up the activities she enjoyed including bicycling, dancing and acting. She says she saw a multitude of specialists who provided contradictory diagnoses. “It’s completely and utterly traumatizing,” Deanna says.
After reading an article about the future of crowdsourced medicine as a diagnostic tool, she submitted her case. The diagnosis – common variable immune deficiency – set Deanna on a path to good health.
How effective is crowdsourced medicine? So far there is little information about patient outcomes after a crowdsourced opinion is provided. However, Dr. Joseph A. Ladapo, an assistant professor of medicine at the University of California, Los Angeles, co-authored a paper in 2016 about a study of the impact of crowdsourced medicine on healthcare claims.
The study found that after medical detectives resolved a case, the patient’s healthcare visits dropped nearly 50 percent, and their average medical costs went down by about $200 per month. Add the anecdotal patient stories that suggest crowdsourced medicine has made a huge difference in people’s lives and the possibilities are impressive.
Most important, patients are becoming increasingly empowered. Their access to medical expertise is increased exponentially by crowdsourced medicine, and for the first time in a long time, many people with an undiagnosed medical condition now have hope.