Diagnosing Rare Diseases with "The Crowd"03/02/2020
Dr. Lisa Sanders, an associate professor at the Yale University School of Medicine, has produced a column about rare medical conditions in The New York Times Magazine since 2002. Dr. Sanders is also famous as a consultant on the medical TV show House, only this time, she's working with patients in the real world. The column follows patients with unusual symptoms as they search for diagnoses that can change their lives, with lots of positive results documented.
The documentary series for Netflix, titled "Diagnosis", premiered in 2018 and can still be found on the platform. The process behind the show, while relatively simple, has changed multiple lives for the better. Despite our incredible ability to diagnose and treat medical problems, there is still so much we don't know. Each column introduces one patient to the world, with stories presented, symptoms listed, and a brief video produced. Ideas from readers are then shared with the patient to help them find the right diagnosis.
Technological evolution and population growth have led to increased connectivity, but they've also helped to create an environment where knowledge is increasingly splintered and specialised. While this is fine for people with common medical problems that present in a clear and defined way, rare medical conditions are still very hard to diagnose correctly. The collective knowledge of the crowd is an amazing new resource for patients, with people able to connect and share information like never before.
Patients on the seven-part TV show present with lots of different symptoms, from severe muscle pain and seizures through to temporary paralysis and strange sensations of deja-vu. They receive help from lots of different sources, including medical specialists in distant locations, other people with the same or similar conditions, and well-meaning medical professionals and scientists with insight into the condition. Instead of being locked down to a single doctor or a few specialists in one part of the world, patients with rare conditions can source knowledge from professionals and peers across the entire world.
Hundreds and sometimes thousands of readers have responded to each patient, and positive life-changing results have been achieved on multiple occasions. According to Dr. Sanders, “The generosity of the people who read the column and were willing to spend real time trying to figure out these mysteries — to me, that was just extraordinary... And I think that the huge, wide variety of thoughts from the crowd [gives] hope of another possibility.” As we world gets more accustomed to crowdsourcing products and sharing services, the collective knowledge base of the world is having an even bigger and more profound effect on some peoples' lives.