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How Physicians are Coping with Self-Diagnosis in the Information Age

Bryan Vartabedian, M.D., a pediatric gastroenterologist practicing in the Woodlands, Texas, has a bone to pick with eosinophils. A type of white blood cell that can be elevated in patients with inflammatory bowel conditions like milk allergies or Crohn’s, Vartabedian has found himself repeatedly explaining to anxious parents who have Googled test results that their child is not host to an exotic parasitic worm—another, far less common reason for abnormal eosinophil readings.

“If you put eosinophil into Google, the first page is full of mentions of parasites,” he says. “The majority of kids in Texas are not traveling to Indonesia. The chances are very slim that they have it, but the parents don’t understand that.”

Vartabedian’s contentious relationship with foreign-born worms is but one example of how influential, disruptive, and occasionally maddening the internet has become in the doctor-patient relationship. According to a 2013 PEW Research study, 35 percent of U.S. adults admitted to searching for information about their symptoms, from headaches to toe blisters; of those, 35 percent never actually wound up seeking medical treatment. Those that do come armed with information that can disrupt, delay, or argue against a professional’s diagnosis.

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“Physicians are not seen as experts anymore,” says Barry Pierre, M.D., a general-practice provider based in Florida. “Google has told someone how to cope [with an illness]. The trust level is not there.”

With complex medical topics reduced to blurbs and symptom checkers online, a web search has effectively become a differential diagnosis. Here’s how patients are interpreting that information, and what doctors are doing to restore relationships with excessively tech-savvy patients.

In the earliest days of his practice, Vartabedian can remember patients that came in unarmed with search results. “I was the arbiter of information in the 1980s and 1990s,” he says. “But in the first decade the internet was around, patients were coming in challenging me with things they had found.”

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As search engines like Google and Yahoo! refined their algorithms and as community groups for discussion of chronic ailments grew, physicians increasingly found themselves having to address questions or concerns from patients that had been excavating all of it—often without context for the sometimes alarming data that was found.

“Take a common issue like headache,” Pierre says. “Regardless of the website used, one possible diagnosis will always be brain cancer. What we [as doctors] understand is that, yes, it could be brain cancer, but there are a million other things that come before that. The patients can’t always make that differentiation.”

Equally disruptive are symptom checkers, a relatively recent addition to amateur medicine that allows users to tick off their symptoms and then get a software-mandated suggestion of a possible diagnosis. “I had no sense of their magnitude until I did a study on them,” says Ateev Mehrotra, M.D., an associate professor of health care policy at Harvard Medical School who looked at the efficacy of symptom checker apps. “They’re used hundreds of millions of times a year.”

Mehrotra examined case studies and found symptom checkers were right only 34 percent of the time; doctors examining the same cases had an accuracy rate of 85 to 90 percent. General searches offer no tailored diagnosis at all—merely a laundry list of possibilities that range from the conservative to the terrifying. All of it conspires to fuel anxiety or doubt a physician’s judgment, outcomes that can be amplified when the patient is inherently distrustful of medicine.

In Pierre’s practice, he estimates 30 to 40 percent of his patients come in admitting to having researched a suspected affliction. “They tend to be pessimistic of medical care in general,” he says. “They may not even come in to be seen often. Their trust in the system has been displaced. That’s why they go to Google.”

Understanding the patient’s motivation, Pierre says, is key to reclaiming that trust. “This type of patient wants to hear your thought process. Let them explain why they feel their answer is correct, and then state why you feel your answer is correct. Let them know how you arrived at your diagnosis.”

Acknowledging their effort is important, he says. Even though they might lack context, the information online is generally sound, and it becomes the physician’s responsibility to frame it in a manner that makes sense. Faced with the brain tumor-presenting-as-headache example, Pierre would agree—sure, it could be. “You can say the fear is valid. But you need to verbalize why that’s not likely, and drive a wedge between the patient and the worst-case scenario.”

Curiously, not all patients who have performed symptom searches will admit to it. “People can be nervous or embarrassed to mention it,” Mehrotra says. “It’s good to ask if they’ve looked something up online. Then you can say, ‘Okay, now I can tell you why you don’t have this or that problem.’”

Vartabedian cringes a bit when he thinks of physicians who might believe the best course of action for a wifi-enabled patient is telling them to knock it off. “That kind of paranoia is dated,” he says. “There are still some older doctors telling families not to look at the internet. You’d never hear that coming from the lips of a 29-year-old internal medicine doctor. It’s crazy.”

In this instance, abstinence is near-impossibility. Knowing that, Pierre advises physicians to forget about drowning out the chorus and consider joining it. “I’ve had patients come in who have already seen my social media posts or videos and have ‘cleared’ me as someone who knows what they’re talking about,” he says. “[Getting online] could almost be a requirement moving forward.”

The doctors all agree that, with shunning the web a futile idea, the best practice is to direct patients toward reputable sources. “I’m a big fan of MayoClinic.org,” Pierre says. “It’s very succinct.” Other sites have reputations for offering concise and accurate information with a minimum of scaremongering. “It’s fine to say, ‘If you’re going to research, research, but do it here, not there.’”

Better, Vartabedian says, is to encourage that research after a diagnosis has been offered. “I would say the time spent educating yourself is better spent once we have a better idea of what’s going on,” he says. If Googling seems inevitable before a clear picture emerges, Vartabedian will engage in what he calls pre-emptive online literacy. “I’ll tell them, ‘Look, if you Google ‘eosinophil,’ here’s what you’re going to find, but your son doesn’t have parasites.’ It’s acknowledging the fact that they’re going to do it.”

Despite concern, Vartabedian also believes that patients aren’t as prone to falling down the rabbit hole as physicians might suspect. “I think in the early days, when they first had information, it was very intoxicating to them,” he says. “Now, they have a healthier relationship with it.” Even the often-unreliable symptom checkers, Mehrotra says, might not be that much different for some patients than asking a family member for advice.

Ultimately, even the most search-obsessive patient is in the office for a reason—to have their ideas filtered through the lens of a trained professional. “I think the value of patients having this information far exceeds any cost it may bring to the health care professional,” Vartabedian says. “They understand the limitations of what they’re reading.”

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