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Diagnosis by Crowdsourcing?

Publication date: 10 Dec 2019

Can television play a role in diagnosing rare disease patients?  Two programs, Diagnosis on Netflix produced by Yale physician and New York Times journalist Lisa Sanders, and Chasing the Cure hosted by broadcast journalist Ann Curry on TBS are trying to do exactly that.  Both series feature patients with challenging conditions of unknown cause. Patients are followed through a process where their condition is presented on video, evaluated by physicians and taken through a battery of medical tests.  Audience input, often from patients with similar symptoms or interested clinicians, is then solicited. After discussions of the clinical data, alternate hypotheses are evaluated and in some cases, an apparently accurate diagnosis can be obtained.

Diagnosis is produced in conjunction with a column for the New York Times Magazine.  Readers are introduced to patients as they cope with their unusual undiagnosed illness.  Details of the illness and key medical records are shared. Readers are asked to pitch in with their thoughts on possible causes, and the responses could number in the thousands.  The program focuses on tough cases for which there are no easy answers. Says Dr. Sanders, “The cheapest way to treat somebody is to get the diagnosis right.” 

In Chasing the Cure, a panel of doctors works with the audience to crack patient cases which may include the undiagnosed, misdiagnosed, or uncured.  Patient cases are presented on video and the program proceeds with live interactions that could continue across several episodes. Spontaneous interactions of a panel of doctors and experts are captured.  Audience input is also solicited. Even though much of the show is live, behind the scenes, the program strives to maintain a patient first approach, with rigorous vetting and planning of content. 

While both shows seek to provide answers to patients in need, the existence of these shows raises questions about broader issues.  First, they expose deficiencies in the healthcare system. It is understood that individual physicians cannot be experts for all diseases, especially those that are extremely rare.  Patients are clearly falling through the cracks in the system, where appropriate diagnosis and treatment are not available or accessible. There are of course pros and cons of disease diagnosis by television.  Placing rare diseases into the spotlight can undoubtedly advance awareness of these disorders and promote an understanding of the challenges confronted by patients. Presenting a real-life mystery story with a sense of urgency stirs interest and involvement.  Audience empathy can be inspirational and compassionate. Finding persons with similar disease experiences counters loneliness and provides hope. Providing a platform for interested clinicians and researchers to rapidly exchange information and ideas about a particular case can accelerate progress towards a diagnosis and potential cure.  Collaborative brainpower offers differing perspectives and fresh approaches to unravelling difficult cases. 

On the other hand, television is entertainment.  Producers must navigate a fine line between presenting an uplifting story and seemingly exploiting patients who may feel desperate.  Further, there is a responsibility to present scientifically accurate information, even if it doesn’t lead to a tidy happy ending. Similarly, viewers who are undoubtedly attracted to optimistic success stories must not be misled into thinking that cures for even the most challenging diseases can be found after a few short weekly episodes.  

Both programs utilize groups of knowledgeable physicians and carefully screen audience input of dubious untested remedies.  The result is a broad-based discussion of possible causes that may lead to better understanding of a condition, if not a probable diagnosis.  Clearly, this unconventional approach is available only to a very select few patients. Even so, publicizing the plight of patients experiencing rare and hard to diagnose diseases may help speed progress towards effective therapies or cures.  At their best, these programs can play an important educational role and provide life-changing strategies for rare disease patients. In this age of instant information, crowd-sourced medical diagnosis may continue to grow in influence.