When you’re stumped by a diagnostic puzzler, here’s what to do

Tanya Albert Henry , Contributing News Writer

Internist Lisa Sanders, MD, a columnist for The New York Times Magazine, took crowdsourcing to a whole new level as the star of the recently released Netflix series “Diagnosis.”

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She presented patients’ symptoms and medical histories in her widely-read column, also titled “Diagnosis,” and on social media. Theories from around the world poured in and Dr. Sanders, a Yale University School of Medicine associate professor, helped the hard-to-diagnose patients explore new avenues.

It’s not a formula the typical time-squeezed physician can replicate when facing a patient whose symptoms pose a diagnostic puzzle. So, where can physicians turn to for help in solving tough cases?

“In my mind, crowdsourcing is really a metaphor,” Dr. Sanders said in an interview with the AMA. “It’s about how we shouldn’t limit where we get our information from.”

She offered several areas physicians can easily turn to for help.

While many physicians cringe when patients come into the office after searching online for information about their symptoms, Dr. Sanders said doctors shouldn’t be so quick to discredit what the patient may have discovered.

“The patient brings in important information. I can’t tell you how many patients have done due diligence on their own health and apologize for what they know. I know everyone says you should not research your own illness. I don’t say that,” Dr. Sanders explained. “Now, if you come in and tell me you have Moyamoya disease because you have a headache, I’m going to try to gently guide you away from that.”

She said she hopes physicians who watched the Netflix series “Diagnosis” took note that regular people—people who did not go to medical school—also know things. “And that is a source of wisdom that we should feel free to tap into,” Dr. Sanders said.

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Physicians know that colleagues are an important source of knowledge and “we should reach out to them more than we do,” Dr. Sanders said.

Beyond talking to colleagues down the hall, busy physicians can reach out to fellow doctors around the country and around the world through websites geared toward physicians, Dr. Sanders noted.

For example, KevinMD is a website where physicians, patients and other health professionals share insights. The site has crowdsourced difficult cases and Dr. Sanders said that is what inspired her to write the Times column, “Think Like a Doctor,” in which she presented a solved medical mystery without telling readers the diagnosis and asked them to write in about what was going on.

The Human Diagnosis Project, or Human Dx, is a free online system, available on mobile and desktop, that enables primary care physicians working with underserved patients to access the insights of multiple physicians on a single case. It has thousands of contributors from dozens of countries across 40-plus specialties.

A growing trend, and one that Dr. Sanders said has caught her interest, are services at highly respected institutions that allow physicians or patients to send medical records to physicians from that institution then review and provide a second opinion for a fee that is typically less than $1,000.

For example, Stanford Medicine Online Second Opinion allows patients from anywhere to get a second opinion without physically visiting the California medical center. Instead, patients can send in medical records, imaging and test results to receive personalized treatment recommendations.

That is similar to programs at Massachusetts General Hospital, University of Chicago Medicine, Johns Hopkins and University of California San Francisco Medical Center, to name a few.

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Medicine is rapidly changing and as new things are discovered, people are able to get a more accurate diagnosis than ever before. Still, the body only has so many ways to let patients and physicians know that something is wrong, Dr. Sanders said. In her recently released book, also titled Diagnosis, Dr. Sanders organized a selection of her columns by symptoms.

“I did it that way to show that just because people come in with shortness of breath or abdominal pain, they don’t have the same thing,” she said. “It’s like the difference between the alphabet and the word. The alphabet has 26 letters and there are millions of words. In medicine, you have a couple dozen symptoms and an entire encyclopedia of diagnoses.”

Just because a physician doesn’t personally know a certain piece of information, it doesn’t mean that it’s unknowable, Dr. Sanders said.

“It just means you don’t know it,” she explained. “There is a phrase I use, that we use in medicine, all the time. The term is for symptoms described as ‘medically unexplained.’ But do you know what is missing? It is missing two key words. It should be symptoms that are ‘medically unexplained by me.’ We have areas that we know a lot about and then we have areas we know a little about. We should acknowledge this and feel comfortable about reaching out to others.”