The Age of Empowerment for Neurology Patients?

April 4, 2016
Heidi Moawad, MD

Where does neurology misinformation come from, who is prone to it, and how can you deal with it?

In the age of empowered information, neurological disorders are among the most common medical conditions plagued by the spread of misinformation. Those of us who are neurologists recognize that neurology is endlessly fascinating and mysterious. But, even for non-medical people, stories of the trials and triumphs of the lives of those who are survivors of neurological illnesses tug at the heartstrings while stimulating curiosity about how the brain works. The diagnosis of a neurological disease is a particularly life-changing event, and the few neurological conditions that are manageable are usually not curable. This combination of unsolved problems and mysteries understandably leads patients on a desperate quest to unearth life-saving cures that may not be accepted or validated by the medical community. The fact that it is easy and inexpensive for anyone to construct a website or a blog puts the final touch on the creation of a multimedia world overflowing with information and misinformation for patients, curious readers, and fringe groups to add to and to interpret in any and every possible way. 

Where does neurology misinformation come from?

Neurology misinformation runs the gamut from pseudoscience to unfounded excitement about miracle cures for disease, exciting natural remedies and stories of the harms of allopathic medicine. Historically, neurological illnesses such as blindness and hemiparesis have been blamed on anything from angry ancestors to sin. It is no wonder then, that there is still a range of intriguing theories to explain diseases that are mysterious in origin, such as autism or epilepsy.

When scientific theories are proposed for clinical research or basic science research, a thorough peer-reviewed process for validating the theories to be examined is a customary starting point. Yet, theories proposed and promoted to the public while bypassing scientific rigor may still make it to widespread audience. And, more likely, odd theories are likely to become part of niche catalogues, even if they are not widely revered.

Who is prone to misinformation?

Despite the seemingly hopeless circumstances associated with severe neurological disease, most patients that come to a neurologist are not asking for strange therapies or refusing standard medical treatment. The reason, according to a collaborative study from Boston and Italy, is that people who believe in conspiracy theories about medical care tend to believe in conspiracy theories in general. Not every patient will click on an article claiming that the medical community is hiding the cure to disease and even fewer patients will give credence to such stories. The study, which included 1.2 million individuals, showed that people who tend to ‘like’ stories of conspiracy theories on social media tend to gravitate towards like-minded online communities that share and post similar stories.

This result suggests that certain personal characteristics increase exposure to stories that provide misinformation as well as creating a community that provides social approval of such beliefs. It also makes sense, then, that people tend to click on stories with headlines that support a notion that was already held. Furthermore, believing the content of a story is largely based on whether the story and the evidence confirm a pre-held belief.

How can a neurologist deal with misinformation?

Since people tend to judge ‘new’ ideas according to criteria that are already consistent with their pre-held beliefs, it is useful for a neurologist who is dealing with a misinformed patient to try to appeal to areas of common ground, instead of completely disregarding or belittling a patient’s information and ideas. For example, validating the patient’s symptoms, listening to concerns, and responding with statements such as, “I can see why you suggest that idea, but…” instead of, “that concept is completely untrue.” This can set the stage for a more fruitful discussion about the treatment options.

Source: Bessi A, et al. Science vs conspiracy: collective narratives in the age of misinformation. PLoSOne. 23 Feb 2015.