|Diagnosing Rare Diseases with "The Crowd"
As crowdsourcing gets more popular as a
sourcing model for goods and services, the world has started to embrace
"the crowd" as a way to divide work and achieve better results. The
power of the collective mind has been tested in a recent experiment, and documented
in a TV series based on a New York Times Magazine column. When local
specialists are unable to diagnose rare medical conditions, cases are turned
over to "the crowd" to amazing results.
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.