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Emergentology

Crowdsourcing is a Novel Idea, but Does it Work?

Walker, Graham MD

doi: 10.1097/01.EEM.0000604576.97476.0d
Emergentology

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The following series is designed to entertain and inform—not provide medical advice. You should always consult your doctor when it comes to your personal health or before you start any treatment.

This statement begins each episode of “Diagnosis,” the Netflix and New York Times series hosted by Lisa Sanders, MD, an internist and the author of a Times column by the same name who was the inspiration for the TV show “House MD.” I have enjoyed her columns for years now. (https://nyti.ms/2lSyFoe.)

The concept of the show is that Dr. Sanders tries to use the wisdom of the crowd, also known as crowdsourcing, to help patients with rare and bizarre symptoms who doctors have been unable to diagnose. She writes about a patient in her column, and the newspaper invites anyone and everyone to write in (or submit a video clip of their diagnosis to the show). There is typically a mix of submitters—medical specialists who love a diagnostic challenge, patients or family members who recognize similar mysterious symptoms, internet sleuths who like to Google and use WebMD, and, of course, the crackpot conspiracy theorists who think everything is Lyme disease.

The show's intent and the idea of using crowdsourcing for rare diagnoses is novel and certainly wasn't possible before the internet. Unfortunately, without being able to examine each patient or gather histories (and for many, not having any medical training), many of the options seem like stabs in the dark.

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Unrealistic and Unfair

I'll be honest, I have mixed feelings about the show despite really wanting to like it, but the first episode was manipulative and disingenuous. Diagnostic spoiler alert: A young woman with recurrent myalgias and rhabdomyolysis (CKs in the 30,000-50,000s) is admitted dozens of times over six years with no diagnosis. Several specialists get the general diagnostic category correct (fatty acid metabolism disorder), and the patient apparently has blood work sent to Oregon (OHSU, maybe?) and visits a UCLA metabolic specialist.

A camera crew visits her, appears to induce her condition (films her exercising outside on a hot day), and shows her being hospitalized. She is eventually flown to Italy to get specialized testing after an Italian medical student thinks her condition is ... a fatty acid metabolism disorder. The Italian team is unable to diagnose her, so they sequence her genome and two months later provide her with a diagnosis. She starts a new diet, and her symptoms are markedly improved.

I am in no way blaming the young woman for her disease, medical care, or the way her mystery illness was presented in the episode, but it seems genuinely unrealistic and unfair how the producers portray her care. It sounds as if the medical system essentially gave up on her (despite specialist notes headed in the right diagnostic direction), and the only way for this young woman to get a diagnosis was to fly to Italy where at least an Italian doctor tried to help her.

We have overwhelmingly complicated health care, insurance, and billing systems in the United States that are difficult to navigate even for healthy people, let alone patients with a rare genetic disorder. This is not a point of contention. But I don't know a single doctor who would just be content with hospitalizing a patient dozens of times for recurrent rhabdomyolysis without an outpatient referral for further testing and specialty care. Dr. Sanders even says this herself in the episode: “Doctors in the hospital are focusing on making sure that whatever is trying to kill you doesn't kill you. That's good. That's an important job. But when you have a chronic problem you need something different than that. You need somebody to think, why is this happening? And that's the kind of thinking that happens outside the hospital.”

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System Fail

Unfortunately, this is buried in the hour-long episode with no further comment about where the system failed. Was it an insurance problem? Did the hospital really fail to refer her to a tertiary or quaternary specialty center for years? Did her labs get lost? Did the specialty referral fall through for any number of reasons? Was no one in the system—her pediatrician, parents, social workers, teachers—advocating for her when these episodes started when she was 14?

Fortunately, the rest of the episodes focus much more on the challenges and dilemmas facing patients with chronic, rare, hard-to-diagnose disorders and also on the fact that many smart, experienced, well-trained physicians can have different opinions about what the diagnosis is.

Next month I'll share some highlights from “Diagnosis” and what I've learned about the challenges of a chronic and undiagnosed disorder for patients and their families.

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Dr. Walkeris an emergency physician at Kaiser San Francisco. He is the developer and co-creator of MDCalc (www.mdcalc.com), a medical calculator for clinical scores, equations, and risk stratifications, which also has an app (http://apps.mdcalc.com/), and The NNT (www.thennt.com), a number-needed-to-treat tool to communicate benefit and harm. Follow him on Twitter @grahamwalker, and read his past columns athttp://bit.ly/EMN-Emergentology.

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