"I Googled My Symptoms and I Think I Have Ebola"

Patients may present to their physicians with unrealistic expectations due to any number of factors, including poor health literacy and lack of underlying knowledge. Increasingly, health information that patients obtain online in advance of an appointment with their physician can create unrealistic expectations and potentially damage the patient–provider relationship. This tip examines how likely patients are to research their medical conditions online, the reliability of such information, and how physicians should approach patients with a penchant for self-diagnosis. 

Health Information from Cyberspace

The practice of seeking medical information via the Internet is not a new phenomenon. A 2002 article in the Journal of Internal Medicine noted: “[P]rimary care providers should recognize that patients are using the World Wide Web as a source of medical and health information and should be prepared to offer suggestions for Web-based health resources and to assist patients in evaluating the quality of medical information available on the Internet.” In this study, 53.6 percent of respondents stated that they used the Internet for health information.

A decade later, the Pew Internet Project’s research related to health and health care found that 72 percent of Internet users had looked online for health information in the previous 12 months. The Pew study also found that: 

  • Seventy-seven percent of online health information seekers began their last session at a search engine such as Google, Bing, or Yahoo, whereas another 13 percent said that they began at a site that specializes in health information, like WebMD. 
  • The most commonly researched topics were specific diseases or conditions, treatments or procedures, and doctors or other health professionals.
  • Half of online health information research is on behalf of someone else—information access by proxy.

All Online Information Is Not Created Equal

Many medical websites are neither accurate nor updated regularly. This is true not only of websites offering general medical information, but also of the spate of “symptom checkers” that have emerged in recent years. A 2015 study commissioned by the  U.S. National Institutes of Health noted that “hundreds of millions of times every year many of us turn to a new kind of online software called symptom checkers to try to self-diagnose our symptoms and to get advice on whether we should seek further medical care or just rest at home until we feel better.”

Not surprisingly, symptom checkers varied widely in their ability to diagnose a condition and recommend care. The study’s authors noted: “These tools may be useful in patients who are trying to decide whether they should get to a doctor quickly, but in many cases, users should be cautious and not take the information they receive from online symptom checkers as gospel. ... [O]verall, the 23 symptom checkers provided correct triage advice in 58 percent of cases, with the checkers performing much better in more critical cases, correctly recommending emergency care in 80 percent of urgent cases. In comparison, other studies have found that Internet search engines for urgent symptoms led to content that suggested emergency medical treatment only 64 percent of the time.”

Medical websites are helping to frame patients’ expectations of their health care and health care providers. What should a conscientious physician do in response?

Working with a Self-Diagnosing Patient

Developing and maintaining a positive patient–physician relationship requires effective communication, including when discussing with a patient the medical information the patient found online. In an opinion piece published by the BBC, Dr. Anthea Martin, senior medical adviser with the Medical and Dental Defence Union of Scotland (MDDUS), sums up the matter as follows: 

[T]he message for doctors is clear: don’t dismiss web-wise patients. The risk here is that they may miss an important medical problem. Doctors must listen to what every patient has to say and should consider carefully information presented to them by the patient—even if after doing so they decide to dismiss that self-diagnosis of dengue fever.

A 2002 study of U.S. physicians noted: “Physicians believed that patients bringing in accurate, relevant online information is beneficial and welcomed it. Conversely, physicians believed that inaccurate or irrelevant information harms the quality of care, health outcomes, time efficiency, and the physician-patient relationship.”

FOJP recommends that physicians be open to—and prepared for—conversations based on a patient’s own online research. When discussing medical information that a patient found online:

  • Do not dismiss the information out of hand or refuse to discuss the patient’s findings.  
  • Do remind the patient that even the best online medical information is general in nature, whereas a physician’s responsibility is to treat each patient as an individual based on his or her specific medical history. 
  • Do use the discussion as an opportunity to provide the patient with a list of reliable online health resources. See this guide from Johns Hopkins as an example. 
  • Inquire whether the patient has any concerns or questions about his or her condition, treatment, or prognosis based on the patient’s research. 

Conclusion

Without question, the Internet has made it easier for us to do any number of tasks, from buying movie tickets to making dinner reservations to finding our destination while driving. The Internet also has made it possible for patients to self-diagnose their condition or research your diagnosis and treatment plan. Understanding how best to channel a patient’s interest in—and desire to know more about—his or her overall health and specific medical condition can help enhance the patient–provider relationship. 

Chances are that your patients are comparing what they are told to what they learn from Google. It is always better to be prepared.