‘Diagnosis’ column that uses crowdsourcing leaps to Netflix

By Mark Kennedy / Associated Press

NEW YORK — There are some physicians who forbid their patients from going online to type in their symptoms, fearing they’ll get incorrect information or become more anxious. Dr. Lisa Sanders is not among them.

Sanders, whose monthly “Diagnosis” column in The New York Times magazine inspired the hit Fox TV series “House,” has a more practical — and democratic approach — to so-called Dr. Google.

“I actually think that no matter what doctors said or when they said it, patients have been discussing their illnesses as the first symptoms happen,” she said.

“By the time a patient brings their story to me as their primary care doctor, they’ve already run it by their best friend, their spouse, their mom, their kids — they’ve told their story to everybody. It turns out that the internet is now just one more everybody you tell your story to. I don’t think that’s a bad thing.”

Sanders doesn’t just think crowdsourcing isn’t bad, she’s harnessing the internet and social media in her work diagnosing unusual cases. This month, she’s showing off that approach to a whole new crowd — Nexflix users.

The new seven-part documentary series “Diagnosis” piggybacks on her Times columns by profiling seven patients as they track down a diagnosis, from a Gulf War veteran in New Mexico to a girl with seizures in New York City.

“The show is about diagnosis as a process that doctors go through but it’s also a show about diagnosis as a process that patients go through, too. And I think both ends have to be treated with respect and honored,” Sanders said.

In the series, Sanders consults as the patients and their doctors seek various treatments, go down blind alleys and seek advice on social media, from patients and doctors alike. More voices in the mix mean more dizzying options but some lead to unexpected solutions.

The little girl in New York with seizures is told by one doctor that an operation to remove half her brain as the “gold standard.” But her parents decide to keep looking and instead choose to have a less invasive brain implant, an option they found out about through feedback.

“Never in human history has medicine been able to do and know as much as we do and know right now,” said Sanders. “Never before have we been able to make as many diagnoses as we can now.”

Jonathan Chinn, an executive producer alongside Scott Rudin and his cousin, Simon Chinn, said the series highlights the benefits of technology — in this case to connect a global village of experts.

“We focus a lot on the negatives of technology — spying and a lack of privacy — but this is an example of a way that technology, if harnessed the right way and responsibly curated, can actually save lives and make peoples’ lives tangibly better,” he said.

While there’s a lot of misinformation online, Sanders thinks patients are becoming more critical about where they get their information. She thinks the Centers for Disease Control and Prevention and National Institutes of Health have excellent information, and even Wikipedia can be helpful so long as the entries are edited by “people who have skin in the game.”

“We are getting to be savvier consumers,” she said. “I hope that people have enough sense to understand that when money is guiding your message, that maybe the message isn’t the best.”

Chinn said the series struck home in a personal way. Not long before prolific producer Rudin brought the project to him, his son was hospitalized with a mysterious intestinal problem whose cause was never known. Doctors in white coats just shrugged.

“It was interesting as a parent in that situation — not as a producer — the frustration of knowing that somewhere out in the world there probably was an answer to what was wrong with my son but there was no way to get it,” he said.

As the series shows, Sanders is a champion of patient-centered care. If in the past doctors were liable to dismiss or downplay their patients’ experiences, those days must come to an end, she thinks.

“The way I see a medical interaction is it’s a conference between two experts. I am the expert on bodies, how bodies work, how bodies don’t work and what we can do about it. What the patient is the expert on is that body and how that body feels,” she said. “There is no one who can tell you how the patient feels except the patient.”

Sanders, a professor at Yale, said she hopes doctors in particular tune into “Diagnosis,” in part to better understand what their patients go through. They often see a patient for 20 minutes, but the sick have to live with private suffering for weeks or months or years.

“I think one of the things that doctors will take away from this is how hard it is for patients to live with this kind of uncertainty,” she said. “This is an opportunity to remind doctors of how frightening it is to be alone out there.”