Our healthcare system is broken. Can crowdsourced medical shows fill the void?
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 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: that 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 American healthcare system and the use of crowdfunding sites such as GoFundMe to pay for healthcare 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 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 was also a technical advisor 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 lay people.
Sanders notes that informal crowdsourcing is commonplace in the medical community. For example, Sermo.com is a private social network where doctors often turn for advice with difficult cases.
Interest in these stories is nothing new, says Nancy Berlinger, a scholar at the Hastings Center, a bioethics research institute in Garrison, N.Y. “This is tapping into something that for a long time we have found to be really interesting. There is a lot of history in medicine of the clinical tale, of ‘Let me tell you about an interesting case. Let’s solve the mystery.’” She points to Sherlock Holmes, who was based on diagnostician Joseph Bell, and the bygone practice of public autopsies.
People are fascinated by the human body, and “there is educational value in showing readers or viewers how actual doctors approach diagnoses. There isn’t just this a-ha moment,” she adds.
However, Berlinger believes that crowdsourcing presents a number of ethical concerns. “Sometimes people come up with things that are wrong,” she says, that could potentially delay the resolution of a case. Withholding a diagnosis to accommodate a production schedule is also problematic, and disclosing a genetic condition on television “means family members are getting information they may or may not want in a public forum.”
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. 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,” says Sanders.
“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 the HGTV renovation show “Flip or Flop,” found out he had Stage 3 thyroid cancer thanks to an eagle-eyed viewer who noticed a lump on his neck. “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 healthcare system, both highlight the additional financial stress created by chronic health problems and illustrate how inadequate coverage can prolong the quest for answers.
Featured in “Diagnosis,” Willie is a 46-year-old Gulf War veteran suffering from unexplained seizures, mood swings and memory loss. He has lost his job, been rejected for disability and is fighting to obtain benefits through the Department of Veterans Affairs — all while racking up thousands of dollars in medical bills. Although the production pays for travel in some cases, it does not cover the cost of care — an intervention that would cross an ethical line by the standards of traditional journalism.
Most of the specialists in “Chasing the Cure”provided their care pro bono, according to TBS/TNT. As Curry announced in the premiere episode, the show also chipped in to pay for DNA sequencing for Rori, a 51-year-old schoolteacher who is unable to walk or speak. Her insurance wouldn’t pay for the procedure, which could help narrow her diagnosis.
It would not be financially feasible for the production to fund the ongoing treatment of every patient who appears on air. For these people, getting a diagnosis — or something close to it — is a relief, but it also introduces a new anxiety: how to pay for treatment.
And that’s something we haven’t quite figured out yet.
Says Berlinger, “It would be ironic indeed if a person diagnosed via crowdsourcing would then have to turn to crowdsourcing to fund their medical bills.”
‘Chasing the Cure’
When: 6 p.m. Thursday
When: 9 p.m. Thursday
Rating: TV-14 (may be unsuitable for children under age 14)
When: Any time
Rating: TV-14 (may be unsuitable for children under age 14)
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