The Risks of Using the Internet to Self-Diagnose

Self-diagnosers are considered 'challenging' by physicians

Woman with a cold looking at digital tablet
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A majority of us turn to the Internet for health-related information. According to the Pew Research Center, in 2014, 87 percent of American adults had access to the Internet, and in 2012, 72 percent of survey respondents said that they’ve looked online for health-related information within the past year.

Not too long ago, patients were passive receivers of medical information. The physician would take a few minutes to explain a disease, its genesis and anticipated course, followed by a description of treatment options.

With the proliferation of the Internet—a technology that has changed medicine more than any other single invention—the physician-patient dynamic has changed, too. Now, anybody can easily access health-related information, and patients bring this knowledge to the office visit.

With this deluge of health data, physicians are concerned about how their patients will treat all this information and how this information will impact the “doctor-patient relationship,” which, according to authors Susan Dorr Goold and Mack Lipkin, Jr., is defined as “the medium in which data are gathered, diagnoses and plans are made, compliance is accomplished, and healing, patient activation, and support are provided.”

From a clinical perspective, medical information found on the Internet is meant as supplemental and is best used to inform your medical-decision making—not replace it. Medical information found on the Internet shouldn’t guide self-diagnosis or treatment.

Internet Searches by Patients

Patients typically use the Internet in two ways.

First, patients seek out information before a clinic visit to decide whether they need to see a healthcare professional to begin with.

Second, patients search the Internet after an appointment for either reassurance or due to dissatisfaction with the amount of detail provided by the healthcare provider.

Despite obtaining health-related info from the Internet, the vast majority of people don’t use the Internet to self-diagnose and instead visit with their physicians to establish diagnoses. Furthermore, most people also turn to their physicians with questions about drugs and information about alternative treatments as well as for referrals to specialists.

Particularly active Internet searchers include people with chronic illnesses who not only seek out more knowledge about their illness using the Internet but also turn to others for support. Additionally, people who lack insurance often turn to the Internet to learn more about symptoms and illness. Finally, people with rare diseases, who would be hard pressed to meet others like them in the real world, often share information and scientific articles using online platforms.

Physicians Respond in Three Ways

According to a 2005 review published in Patient Education and Counseling, Miriam McMullan suggests that after a patient presents online health information to a physician or other healthcare provider, the healthcare provider can respond in one or more of three ways.

Health-professional centered relationship. The healthcare provider can feel that his medical authority is being threatened or usurped by the information that the patient cites and will defensively assert “expert opinion” thus shutting down any further discussion. This reaction is common among physicians with poor information technology skills. The physician will then use the remainder of a short patient visit to direct the patient towards the physician’s own desired course of action. This approach often leaves the patient feeling dissatisfied and frustrated, and patients can leave the appointment believing that they themselves are better equipped than the physician at seeking out health information and treatment options online.

Patient centered relationship. With this scenario, the healthcare provider and the patient collaborate and look at Internet sources together. Although a patient has more time on her own to search the web, a physician or other healthcare provider can take some time during the patient encounter to surf the web together with the patient and direct her to relevant sources of additional information. Experts suggest that this approach is best; however, many providers complain that there’s not enough time during a lower-level clinical visit to search the Internet with the patient and discuss disease and treatment options.

Internet prescription. At the end of the interview, the healthcare provider can recommend to the patient some websites for reference. With multifarious websites concerning health, it’s impossible for the provider to vet them all. Instead, she can recommend a few websites from reputable institutions, such as the CDC, MedlinePlus or NHS Choices.

Physician Perspective of Internet-Based Information

Nothing is more telling than the candid reactions of physicians who hear questions from patients 24/7. In this vein, Dr. Farrah Ahmed and colleagues organized six focus groups with 48 family physicians who had active practices in the Toronto area.

According to the researchers, “Three overarching themes were identified: (1) perceived reactions of patients, (2) physician burden, and (3) physician interpretation and contextualization of information.”

Perceived Reactions of Patients

Physicians in the focus group claimed that some patients who bore Internet health information were confused or distressed by the data. A smaller group of patients used the Internet to either learn more about their pre-established medical conditions or for self-diagnosis with or without self-treatment. Patients who used the Internet for self-diagnosis and self-treatment were perceived as “challenging.”

The physicians attributed the emotional reactions of patients to the sheer enormity of information out there, the tendency for patients to accept health information on blind faith and the inability of patients to critically evaluate the health information presented.

Physicians liked it when patients used the Internet to learn more about their pre-established medical conditions. However, physicians didn’t like it when patients used the information to either diagnose or treat themselves or test the knowledge of the physician. Not only did the physicians characterize these patients as challenging but also “neurotic,” “adversarial” and “difficult” as well as coming from a professional background. Physicians often discussed feelings of anger and frustration when having to defend their diagnoses and treatments with such patients.

Here are some specific physician comments from the focus groups:

“They [patients] are getting full of rather stupid facts in many cases, which they do not know how to interpret, which are usually misinformation.”

“They are bringing up sort of obscure articles and stuff about different conditions, and some of them are pretty scary.… They think everything is happening.”

“I think there’s one situation where the Internet is useful. If the person has the diagnosis, and they want to find out more, educate themselves…, I find that’s actually helpful in cases where…it’s not time-consuming for me.”

Physician Burden

Most physicians questioned during the study found that dealing with health information presented by the patient was time consuming, and used the following choice words to describe the experience: “annoying,” “frustrating,” “irritating,” “nightmare,” and “headache.” Physicians claimed that they felt that it was a burden to deal with the health information presented by the patient, and that they didn’t have time to do so.

Overall, there was a lot of cynicism among members of the focus group. In addition to the burden of dealing with extraneous health information, many physicians exhibited concern over the quality and quantity of health information on the web. Finally, some older physicians acknowledged that their computer skills were bad.

Here are a couple of quotations from the focus group:

“As soon as that list comes out I panic…[because of] time constraints and everything else.”

“I do not mind patients coming in with information, but it is very hard if they present you with a package of, you know, 60 sheets.... Time is really at a premium, so it makes it very difficult.”

Physician Interpretation and Contextualization of Information

Although they weren’t all that excited about it, many physicians in the study viewed putting Internet health information in context for patients as part of their responsibilities. In other words, it’s a physician’s responsibility to consider the individual medical history of every patient when discussing Internet health information. For patients who were self-educators, or used the Internet to learn more about pre-existing conditions, this process was a lot smoother and even facilitated treatment.

However, physicians found it taxing to educate patients who were concerned or distressed by information found on the Internet. Finally, patients who used the Internet to self-diagnose and self-treat often put physicians “on the spot” and required them to defend their diagnoses all while having to debunk incorrect information picked up from the Internet.

Notably, a minority of physicians didn’t feel that interpreting Internet health information was a responsibility of their job. Moreover, some physicians went so far as to “fire” patients who asked such information, refer such patients out to specialists, or charge extra for the visit—all considered defensive behaviors.

Bottom Line

Health information on the Internet is endless. Some of this information is pretty scary, especially if you don’t understand everything that’s being described. For example, one differential diagnosis for headache is stroke, but the chances that any particular incidence of headache is stroke-related are slim—especially if you’re young and healthy.

Information gathered from the Internet can be wonderfully helpful as is the case with patients with chronic health conditions who want to learn more about their care. However, it can also be detrimental, as in the case of a person who needlessly frets over a self-diagnosis, or worse, a person who self-treats a self-diagnosis, which could result in bodily harm. Remember that your physician can help put the information that you gleaned from the Internet in context.

Importantly, diagnosis can’t be based on Internet health information alone. Diagnosis is an entailed process best practiced by a professional. A physician relies on clinical acumen and a wealth of medical information—some of which can be found on the web—to diagnose a patient. Specifically, based on medical history and physical exam findings, the physician deduces a differential diagnosis, or prioritized list of likely diagnoses. Results from diagnostic tests confirm the diagnosis.

If you find information on the Internet that you would like your physician to review and explain, it’s a good idea to drop off this information with your physician and ask her to take a look at it when she has time. Alternatively, you can schedule a separate appointment just to discuss your concerns.

Sources:

Ahmad F et al. Are Physicians Ready for Patients With Internet-Based Health Information? Journal of Medical Internet Research. 2006; 8:3.

Health Facts. Pew Research Center. http://www.pewinternet.org/fact-sheets/health-fact-sheet/.

Kuehn BM. Patients Go Online Seeking Support, Practical Advice on Health Conditions. JAMA. 2011; 305:16.

Lanseng EJ and Andreassen TW. Electronic Healthcare: A Study of People’s Readiness and Attitude toward Performing Self Diagnosis. International Journal of Service Industry Management. 2007; 18:4.

McMullan, M. Patients using the Internet to obtain health information: How this affects the patient–health professional relationship. Patient Education and Counseling. 2006; 63.

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