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Using Crowdsourcing To Diagnose Patients

Hispanic Community November 2019 PREMIUM
It’s no surprise that the internet has changed the practice of Medicine. TeleMedicine is now being recognized by major insurance carriers and medical facilities as a viable option for Patients.

Physicians routinely consult and exchange files on line. Patients can access their medical files and history through laboratory and hospital websites. But now crowdsourcing has taken Medicine to a whole new level. A new series on Netflix explores how Physicians can harness the power of the internet to better treat their Patients and provide a window into the entire diagnosis process.

The series, “D​iagnosis,” explores the life-changing impact of receiving a diagnosis for individuals who’ve been searching for answers, and the healing that comes with connecting with others who can empathize with their experiences.

Based on Dr. Lisa Sanders’ column in The New York Times Magazine, “Diagnosis” follows various Patients on their respective journeys toward finding a diagnosis, and potentially a cure, for their mysterious illnesses. By combining the power of global crowdsourcing, social media and established medical expertise, each case is untangled with illuminating new insights that had previously eluded Doctors.

Dr. Lisa Sanders has been writing the “Diagnosis” column for T​he New York Times Magazine for 17 years. The readership it’s amassed is astonishing not only in its breadth of expertise—which ranges from medical professionals and researchers, to people in search of a casually compelling read to go with their Sunday morning coffee—but also in its devotion.

It turns out Dr. Sanders had, in fact, entertained the idea of crowdsourcing diagnosis through her column, but had some trepidations about how the readership would react to it. “I was worried readers would feel that I was using someone’s desperate situation as a form of entertainment,” she admits. “But when Netflix wanted to do this, it became a real possibility because we’d be spending so much time with these Patients and really letting people get to know them and inhabit their issues.”

With Dr. Sanders providing the medical expertise that would be the show’s bedrock, a series was created that not only offers an accurate representation of how the process of diagnosis actually works, but one that also provides a deep human-to-human element.

By presenting a vision of what the future of health care could look when the best aspects of social media are harnessed and used for good, the series not only creates an opportunity for further discussions about much-needed improvements in how Patients receive diagnosis, but how crucial a diagnosis can be for a person’s emotional and mental well-being.   

Whether receiving a diagnosis from the crowd leads to finding an actual treatment, a community of others in the same boat who can empathize and advise, or an unexpected form of therapy, each of the Patients are undoubtedly in a more informed place because of the collective knowledge of a global village.

For the Patients portrayed in the series, the diagnoses they received—and the ways in which they benefited from them—were as widely varied as the illnesses they have. Some received a diagnosis that led directly toward a tangible treatment plan, while others were able to find relief in finally being able to put a name to their symptoms, or finding a community of others who share their unique experiences, or just paving a path where future generations of people could suffer less. All of the cases were different, but similar and familiar in the complex humanity they presented.

“There’s a lot of motivation for people in these shows to be a good television personality. I didn’t want any of that,” says Sanders. “Many people who are looking for a diagnosis have chronic pain, which is just awful. But pain is colored by so many things—mood, fatigue, anxiety.” It’s not only symptoms that make each Patient unique, but the ways in which they and their families react to them.

“Getting to know these Patients through this documentary was just extraordinary. Just witnessing them moving forward in getting either a diagnosis or the right treatment is one of the great pleasures of this show and of Medicine in general,” says Sanders. “It’s been quite an adventure.” 

Episode Guide For 'Diagnosis'

Episode 1: Detective Work

Angel Parker, a lively and athletic young woman, wakes up one morning suddenly besieged with debilitating muscle pain. Tests for Lupus and Multiple Sclerosis come back negative. Despite being tens of thousands of dollars in medical debt, Angel is determined to live how she wants to live even though the flare-ups are at their worst following physical exertion. Help from her partner and a team of Doctors and researchers in the most unexpected of places prove to be invaluable in finding a diagnosis for her condition.

Episode 2: Second Opinions

Sadie Gonzalez is a vivacious 6-year-old girl who, following a family vacation in the Catskills, began suffering from localized seizures in her mouth and on the left side of her body. With an MRI showing no signs of a tumor and presented with an early diagnosis of Rasmussen’s Encephalitis—an incurable condition mitigated only by a complicated surgery—the family turns to crowdsourcing for alternative options to relieve Sadie’s seizures.

Episode 3: The Wisdom of the Crowd

Gulf War vet Willie Reyes began suffering devastating memory loss and mood swings stemming from a sudden onset of seizures three years ago. Biopsies revealed lesions and unspecified inflammation in his brain. The effects of his condition not only cost him his job, but have taken a toll on Willie and his family emotionally. Desperate to preserve his memories and health, the Reyeses find new leads in a shockingly vast community of empathizers.

Episode 4: Looking for a Village

In Vermillion, South Dakota, 6-year-old Kamiyah Morgan experiences temporary paralysis hundreds of times a day, causing her to lose motor control for up to 30 seconds at a time. MRIs show no signs of a tumor and EEGs do not detect seizure activity in the brain. When testing reveals an extremely rare variation in her gene sequence, a global village comes together to help Kamiyah through a medical journey that charts little-known territory.

Episode 5: A Question of Trust

Lashay Hamblin was an athletic teenager with a robust social life when a raccoon bite and the subsequent trauma she sustained on a family vacation in Costa Rica rendered her constantly nauseous and unable to keep food down. Though her symptoms indicate bulimia on the surface, her regurgitation is not self-inflicted, challenging the medical community’s assumptions of her condition.

Episode 6: Déjà Vu

In Mount Airy, Maryland, 20-year-old Matt Lee experiences a sensation of déjà vu just before passing out, during which time his heart stops. His symptoms have persisted for more than a year, and Doctors haven’t been able to determine if his spells are triggered by a condition stemming from his heart or brain. As the crowd responds to his case, one telling detail leads to a surprising discovery.

Episode 7: Paralyzed

Joe, a 61-year-old dentist, began losing sensation in his feet two years ago and is now paralyzed from the waist down. A procedure to treat his neuropathy caused a blood clot that led to a shutdown of his organs. Tests have ruled out Multiple Sclerosis, Parkinson’s Disease and autoimmune diseases. Ann, a writer and fellow Connecticut resident, experiences sudden, intermittent episodes of paralysis to the right side of her body, including her face and arm. The crowd offers new directions for each of their respective neuropathies, but it’s up to Joe and Ann to determine which steps they’ll take next.

Story and photos courtesy of Netflix

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