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Our health care system is broken – can crowdsourced medical shows fill the void?

In a scene from the Netflix documentary series “Diagnosis,” Dr. Saadi Ghatan attempts to reassure Sadie Gonzalez before her surgery to implant an electrical device to hopefully help control her seizures. (Netflix/TNS)
In a scene from the Netflix documentary series “Diagnosis,” Dr. Saadi Ghatan attempts to reassure Sadie Gonzalez before her surgery to implant an electrical device to hopefully help control her seizures. (Netflix/TNS)
By Meredith Blake Los Angeles Times

LOS ANGELES – If one thing remains true in the rapidly changing world of television, it’s that viewers love a medical mystery. The Patient With the Obscure Ailment That Baffles Physicians has been a fixture on hospital dramas for as long as they’ve existed.

Unexplained illnesses fueled eight seasons of the Fox series “House,” which starred Hugh Laurie as a brilliant but misanthropic diagnostician, not to mention countless daytime talk-show segments and sensational reality-TV series on cable.

Two new shows, “Diagnosis” on Netflix and “Chasing the Cure” on TNT/TBS, put a new spin on the age-old question “What’s ailing me, doc?” by using crowdsourcing to diagnose people suffering from unexplained illnesses.

While the shows differ dramatically in tone, style and format, both operate from the same basic assumption: Finding an answer for these patients means bucking standard medical practice and presenting their cases to a mass audience.

Premiering within weeks of each other, the shows arrive at a moment when mistrust of the medical establishment, negative views of the U.S. health care system and the use of crowdfunding sites such as GoFundMe to pay for health care are increasing.

But leveraging the perceived wisdom of the crowd – most of whom are not medical professionals – and sharing sensitive medical information with potentially millions of strangers also raise a number of ethical and practical questions, starting with the obvious: Does the crowd really know that much?

The answer, say those involved, is an emphatic yes. “The assumption is that the crowd doesn’t know anything,” says Ann Curry, anchor and executive producer of “Chasing the Cure.” “The truth is, the crowd knows a lot.

“When you’re dealing with unsolved cases of people suffering, there’s a chance that someone out there has experienced similar symptoms, or (there’s a) medical professional who has dealt with a similar case.”

“Chasing the Cure” combines a live broadcast with pretaped segments, giving it the look and feel of daytime television. Led by the former “Today” host, each hourlong episode zips through three or four cases introduced in brief videos.

A panel of specialists convenes to review the files, then meets live on air with the patients to discuss possible diagnoses. Some even undergo treatments that are broadcast on the show.

It also leans heavily on social media: Viewers are urged to call or text a toll-free number, tweet using a designated hashtag and visit an elaborate website to review individual case files, provide tips or share their own experiences. The goal, Curry says, is “to democratize data.”

While the live element of the program means that not every patient receives a firm diagnosis, they all leave with a recommended path forward. “Each patient should walk away feeling like ‘I got some information that I needed, some support that I needed, and I was pointed in the right direction,’” says executive producer and showrunner Kim Bondy.

The idea for “Chasing the Cure” emerged after a colleague of Curry’s saw a post on Facebook seeking donations for someone with an undiagnosed illness; she realized that live television could amplify this kind of appeal.

So far, it seems to be doing just that: The premiere episode of “Chasing the Cure” drew 1 million viewers. More than 10,000 people have registered to use the website and are active in the case files, according to TNT and TBS.

Crowdsourcing “acknowledges that there are different ways of knowing,” says Dr. Lisa Sanders, author of the popular New York Times Magazine column that inspired “Diagnosis.” “Doctors know things because we read books and have shelves filled with medical journals and medical books.

“And so there’s that kind of learning. There’s my experiences as a doctor. And there’s also my experiences as a human being who has friends and relatives who are sick, and there are my own illnesses.”

Each episode of “Diagnosis” follows a single subject and his or her family on their quest for answers, providing thorough and often moving portraits of the emotional and financial cost of living with debilitating, unexplained ailments.

Shot in a photojournalistic style, “Diagnosis” has a restrained true crime sensibility, with Sanders, an internist and professor at the Yale School of Medicine, playing the role of lead detective. Sanders narrates the investigation, following clues submitted by readers via video chat, and consults with patients who range in age, affliction and location.

“As a doctor, you know that when you see something you don’t know, the first thing you do is you go to your friend who has a different set of knowledge than you,” says Sanders, who also was a technical adviser on “House.” “For me, crowdsourcing was just taking that to the furthest limits imaginable.”

Netflix doesn’t release viewing statistics, but it says that Sanders received thousands of tips through her column. About half the feedback came from medical professionals – doctors, nurses, pharmacists, even some veterinarians. The rest came from laypeople.

Sanders notes that informal crowdsourcing is commonplace in the medical community. For example, is a private social network where doctors often turn for advice with difficult cases.

Both shows open with carefully worded legal disclaimers, and producers say they have taken care to protect patient privacy. “People would much rather wear their entire medical record on their clothes than, say, the PIN number to their savings account,” says Sanders.

“But as it turns out, medical information is much more tightly held. So the most important thing is to make sure the patients know what they’re getting into.”

“Chasing the Cure” has an ethics team, including an ethicist, a social worker, a psychologist and a lawyer. “I am not going to put anything on television that’s irresponsible or does not help people,” Curry says.

Television and social media have empowered armchair diagnosticians – who, it turns out, are sometimes right. Tarek El Moussa, host of HGTV’s “Flip or Flop,” found out he had Stage 3 thyroid cancer thanks to an eagle-eyed viewer who noticed a lump on his neck.

“The Real Housewives of Beverly Hills” star Denise Richards recently said a fan tipped her off to a similar condition after watching her on TV. Curry believes crowdsourcing can break down crucial barriers.

“We are in a system today where people are siloed by their medical insurance, by where they live, by who they’re recommended to go to for specialists.

“What we’re doing is punching a hole in the silo and saying, ‘What if you take really sick people and you expose them to top-drawer doctors, some of the brightest minds in the profession directly, and to the world?’ ”

Nearly every patient in ”Chasing the Cure“ and ”Diagnosis“ is dealing with some sort of financial nightmare on top of his or her medical condition – fighting with an insurer over coverage, struggling with medical debt, losing jobs, struggling to navigate government bureaucracies or all of the above.

While neither show is framed as an overt critique of our health care system, both highlight the additional financial stress created by chronic health problems and illustrate how inadequate coverage can prolong the quest for answers.

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