Patient Support & Advocacy

Netflix series crowdsources clinical stumpers for diagnosis

Repeated seizures, memory loss and wild mood swings: What is happening to this man?

This little girl’s seizures won’t stop. Her parents need your advice.

He almost couldn’t walk his daughter down the aisle. What is causing his leaden feet?

Those are just some of the questions that internist and Yale University School of Medicine Associate Professor Lisa Sanders, MD, posed to readers of “Diagnosis,” her bimonthly column in The New York Times Magazine.

1 Quiz, 1 Question, 1 CME credit

Take the JAMA Network Challenge on JN Learning to get CME. It’s easy as 1 – 2 – 3.

1. Read the case.

2. Take the quiz – a single question.

3. Read the discussion & download your certificate.

Take a CME Quiz Now

Since 2002, Dr. Sanders’ column has presented patients with mysterious symptoms and traced their route to getting a diagnosis. Her column inspired the Fox TV hit, “House MD,” for which she served as a technical adviser.

For a period of time last year, though, Dr. Sanders turned her column into a crowdsourcing experiment—“Diagnosis: Unsolved Cases”—with the headlines above drawing readers in to try to solve these medical mysteries that so far had gone undiagnosed.

Dr. Sanders presented readers with details about each patient’s symptoms and pertinent parts of their medical records. The patients also shared their stories through videos posted online with the column.

Readers—physicians, nurses, scientists, researchers and just about anyone else—wrote in or sent their own videos theorizing what the patient may have going on in their body. The outpouring of potential diagnoses and well wishes came from around the country and from just about every corner of the globe.

Netflix subscribers can now meet these patients through a seven-episode show, also titled “Diagnosis.”

For each patient, Dr. Sanders and her team combed through the hundreds, sometimes thousands of responses, organizing the potential diagnoses, and their popularity with the crowd, to share with the patients. Camera crews followed the patients on their journeys to find answers.

Viewers feel the patients and their families’ struggles and frustrations and witness their quest for answers to medical mysteries that have eluded the medical community for years. They see how crowdsourcing contributed to new avenues for these patients to follow for answers, and helped patients find and connect to others with similar experiences.

Related Coverage

Platform helps physicians, entrepreneurs meet their match

Along the way, the series also shows flaws in the U.S. medical system, including how a lack of insurance and the high cost of care creates a domino effect of problems for patients.

For physicians, the show offers some tangible lessons about critical communications skills. For example, some patients featured in the series were skeptical of the medical community after doctors previously told them the symptoms were in their heads. Others didn’t feel as if they were listened to at times. These prior interactions affected patients’ treatment decisions.

In an interview, Dr. Sanders—who was an Emmy-award winning producer for CBS News before going to medical school—said good listening and communicating is often key to the stories she tells about diagnosis.

Tanya Albert Henry: In the show, you share how your own family’s experience with a physician’s poor delivery of the difficult news that your mother had died shaped your approach in how you communicate with patients. What advice do you have for physicians when they are communicating with patients?

Dr. Lisa Sanders: Physicians should stop and listen to themselves. Imagine that the person sitting across from them is not their patient, but their mother or their spouse or their child. Delivering bad news is very stressful. And that’s when poor communication usually happens, because who cares how good news comes across? It’s good news.

But bad news is stressful for the doctor and it is stressful for the patient. The doctor feels pressure to get it right. That can be overwhelming, but you cannot forget that you don’t just need to be right with the content—how it is delivered is also important.

Just as you have to teach yourself new procedures or about new drugs, you need to teach yourself how to communicate. We fail doctors in not training them on how to communicate. That is not as true in the past decade, but most doctors weren’t trained in the past decade. Most doctors were trained a lot earlier, and we sent them out into the world with a hearty handshake and a “good luck.”

Now, some doctors don’t need training. We all know people who are naturally good communicators. They can sense how something is going over and whether people are following what they are saying. But, that is the minority. That is the talented few.

I think of communicating like singing: Not everybody can be Pavarotti, but we can all learn to carry a tune. It is true in communication, too. … We should be able to, at the very least, communicate in a way that does no harm and that it honest. It’s learnable, but many doctors haven’t been taught.

We need to be attending to our patients, with attending meaning that we need to pay attention. We work in a system that has tightened the screws on us. We are working at the top of our adrenaline to get everything done.

We are so caught up in the pressures on us that we stop listening to ourselves well before we walk out the door, because we are thinking about the next thing we have to do once we are out the door. So, patients often say they are not being heard.

It’s not that they aren’t being heard, but they are not being attended to. … That is part of our jobs. It is not to just know what someone has, but to give it back to the patients in the language and way that they can understand. … To not do that is not just inconsiderate, it is incompetent on a very fundamental level.

Related Coverage

What real innovation in medicine looks like

Henry: Another theme in a couple of the episodes of “Diagnosis” is how a patient’s low trust in the medical community can affect whether they are willing to follow through with potential treatments. Is there anything physicians can do to combat that mistrust?

Dr. Sanders: Don’t be a jerk. That’s a start. That helps. Once someone has already done something to a patient, all you can do is support them and try help them try to get through it.

Life is long. … There is not an expiration date on the therapy. … Patients have to make their own choices. I have patients who smoke. I don’t think that is a good idea. I tell them that they dock my pay if I don’t mention it. They know I am going to mention it.

But they also know that I care about the things they care about. So, I divide our appointments into stuff I care about and stuff they care about. I start with the stuff that they care about.

Dr. Sanders’ third book, Diagnosis: Solving the Most Baffling Medical Mysteries, which features some of her “Diagnosis” columns, was published in August.