Cyberchondria and the Worried Well

“Cyberchondria and the Worried Well” is chapter 7 of The Cyber Effect” an important book by Mary Aiken, Ph.D., a cyberpsychologist.  Reports estimate that up to $20 billion is spent annually in the U.S. on unnecessary medical visits.  Dr. Aiken asked how many of these wasted effects are driven by a cyber effect?  A majority of people in a large international survey said they used the Internet to look for medical information, and almost half admitted to making self-diagnoses following a web search.  A follow-up survey found that 83% of 13,373 respondents searched the Internet often for information and advice about health, medicine or medical conditions.  People in “emerging economies” used online sources for this purpose the most frequently—China (94%), Thailand (93%), Saudi Arabia (91%), and India (90%) led the table of twelve countries.

Dr. Aiken writes that 20 years ago when people experienced any physical condition that persisted to the  point of interfering with their activities they would visit a doctor’s office and consult a doctor.  In the digital age, people might analyze their own symptoms and play doctor at home.  She notes that about half of the medical information offered on the Internet has been found by experts to be inaccurate  or disputed.  HM feels compelled to insert here the conclusion expressed by Ioannidis’s 2005 paper, which is still believed by most statisticians and epidemiologists, “Why Most Published Research Findings are False.”  This implies that the on-line information is similar to the information available in the research world.  And physicians are working with a questionable data base, so the problem of accurate research information is real and not an artifact of the internet.  [To learn more about Ioannidis see the following healthy memory blog posts,”Liberator of Knowledge from Tyranny of Profit,” “Thinking 2.0,” “Most Published Research Findings are False,’ and “The Problem with Scientific Journals, Especially Elite Ones.”]

There are also online support groups such as the website MDJunction.com.  These groups do provide a place where thousands meet every day to discuss their feelings, questions, and hopes with like minded friends.  Although these places provide support, they might not be the best sources of information.  And MDJunction.com does have a fine print disclaimer at the bottom of the page—“The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.”

The term “cyberchondria” was first coined in a 2001 BBC News report that was popularized in a 2003 article in “Neurology, Neurosurgery and Psychiatry,” and later supported by an important study by Ryen White and Eric Horvitz, two research scientists at Microsoft, who wanted to describe an emerging phenomenon engendered by new technology—a cyber effect.  In the field of cyberpsychology, cyberchondria is defined as “anxiety induced by escalation during health-related search online.”

The term “hyperchondria” has become outdated due to the Fifth Edition (DSM-5) of the “Diagnostic and Statistical Manual of Mental Disorders.”  About 75% of what was previously called “hypochondria” is now subsumed under a new diagnostic concept called “somatic symptom disorder,” and the remaining 25% is considered ‘illness anxiety disorder”.  Together these condition are found in 4 to 9% of the population.

Most doctors regard people with these disorders as nuisances who take up space and time that could be devoted to truly sick people who need care.  And when a doctors informs the patient that they do not have a diagnosable condition they become frustrated and upset.

Conversion disorders are what was called “hysterical conditions,’ which formerly went by such names as “hysterical blindness” and ‘hysterical paralysis.”  These have been renamed “functional neurological symptom disorder”, formerly called “Munchhausen syndrome”, is a psychiatric conditioning which patients deliberately produce or falsify symptoms or signs of illness for the principal purpose of assuming the sick role.

Iatrogenesis is a Greek term meaning “brought forth,” which refers to an illness “brought forth by the healer.”  It can take many forms including an unfortunate drug effect or interaction, a surgical instrument malfunction, medical error, or pathogens in the treatment room, for example.  A study in 2000 reported that it was the third most common cause of death in the United States, after heart disease and cancer.  So having an unnecessary surgery or medical treatment of any kind means taking a big gamble with your life.

In 1999 the estimate was of between 44,000 and 98,000 deaths annually in the United States  when the Institute of Medicine issued its infamous report, “To Err is Human.  HM is proud to note that a one of his colleagues, Marilyn Sue Bogner, was a pioneer in this area of research.  The first edition of her book “Human Error in Medicine predated the IOM report.  In 2003 she published “”Misadventures in Health Care:  (Inside Stories:  Human Error and Safety.”  Unfortunately, she has recently passed away.  And, unfortunately, matters seem to be getting worse.  In 2009 the estimates of each due to failures in hospital care rose to an estimated 180,000 annually.  In 2013 the estimates ran between 210,00 and 440,000 hospital patients in the United States die as a result of a preventable mistake.  Dr. Aiken believes that part of this escalation is due to the prevalence of Internet Medical searches.

So we have a difficult situation.  Cyberspace has erroneous information, but the underlying medical research also contains erroneous information and doctors are constrained by these limitations.  We should be aware of these limitations and be cognizant that the diagnosis and recommended treatment might be wrong.  The best advice is to solicit multiple independent opinions and to always be aware that “do nothing” is also an option.  And it could be an option that will safe your life.

© Douglas Griffith and healthymemory.wordpress.com, 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Douglas Griffith and healthymemory.wordpress.com with appropriate and specific direction to the original content.

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2 Responses to “Cyberchondria and the Worried Well”

  1. Deb Fencer Says:

    I thoroughly enjoy your blog. Regarding today’s entry, I am uncomfortable with your mention of the opinion that research findings are mostly false. It only reinforces the non-science public’s growing opinion that science is mostly bogus, when the scientific community knows that a single study simply draws a tentative conclusion pending replication (multiple times), even if the research team is skilled and ethical. Legitimate studies can be erroneously labeled false suggesting unethical behavior simply because follow-up replication studies did not bear out the original findings. Failure to replicate can simply be a failure to control or account for all the variables. Of course, unethical research is present in many institutions which can confound our most responsible medical professionals. That’s a different problem. I believe your point was that websites tend to latch onto individual studies, assuming the findings are “real”, which is, of course, promoting enormous amounts of misinformation. Of course you know all this, but I wonder if you might address the issues of studies (what they do and not do)in a future entry.

    • healthymemory Says:

      I both appreciate and share your concern. The basic problem does not lie in the web, nor does it lie in unethical research. You need to read Ioannidis’s article or read the several other related healthymemory posts by putting Ioannidis is the search block. The Economist did a cover feature on this some time back, which I unfortunately do not have, that provided a good description of the problem for the layperson. Epidemiologists and statisticians are distressed and are working to solve the problem. This problem is also being given a high priority by the Association for Psychological Science (APS). The fundamental problem is the failure to replicate, which is the sine qua non of science. We all need to realize when we go to a doctor, the doctor is giving his personal best advice, but in most cases there is no sound scientific basis for the advice. In a few years, the doctor might be giving different, contradictory advice. It is remarkable that this problem has not received national attention. But it is important that the healthymemory blog provide the best advice it can. In this case it is to get multiple opinions and to remember that taking no action is an option to consider.

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