Healthcare and misinformation - challenges beyond patient education

Growing patient awareness and the overwhelming flow of health information (and misinformation) has highlighted the importance of health literacy. Unfortunately, public information and educations programmes have failed to tackle the effects of misinformation. Successfully countering misinformation presents however distinctive challenges beyond patient education and may require trust built on collaborative patient-clinician relationships. USI health communication expert Prof. Peter Schulz (Faculty of Communication, Culture and Society) writes about this increasingly relevant issue in Nature Reviews Nephrology, the essential insights of which are here summarised.

Active patient participation in healthcare is a natural (perhaps even unconscious) product of the availability of vast quantities of medical information on the Internet and social media, direct-to-consumer advertising of prescription pharmaceuticals, and direct-to-consumer marketing of medical tests and screens. Unfortunately, as vividly reflected in the controversies over COVID-19 vaccination and treatment, seeking to improve literacy by providing accurate and adequate information can fail to ensure that patients make healthy choices. Take, for example, diabetes. Despite the range of medical treatments available for this condition, many patients — perhaps a third to a half of those diagnosed — forego taking medications as prescribed, citing diet and exercise as preferred alternatives to medication and claiming that medications are ineffective or unsafe.

Addressing misinformation

Particularly on the Internet or through social media, patients might be exposed to information that is incomplete, of questionable relevance, or simply wrong being uninformed and being misinformed can both lead to flawed judgments and decisions that result in negative outcomes. The traditional answer to lack of information is education. Indeed, campaigns seeking to correct misinformation also seek to (re)educate members of the audience. Addressing misinformation however not only requires imparting knowledge but also correcting mistaken beliefs and research has shown that people’s beliefs can be very persistent when acquired by misinformation. If the misinformation is consistent with one’s worldview, it can be maintained even in the face of retraction because it is hard to disentangle it from the worldview. Those who are misinformed may also be motivated to maintain mistaken beliefs to avoid having to admit they were wrong and might actively reject accurate information.

Misinformed empowerment

The central problem raised by the persistence of misinformation and ill-informed confidence is that it negates the benefits of patient empowerment. The patient who is misinformed but actively participating might make poor decisions — choices that are deleterious to their health. The many deaths of patients with COVID-19 who refused vaccination because of misinformation offer instructive examples. Likewise, one study of diabetes misconceptions among patients with type 2 diabetes found that 54% of them believed that they could feel high blood glucose levels and 24% believed that diabetes medications were not needed when glucose levels were normal. These incorrect beliefs could lead to unhealthy choices.

Building trust to counter misinformation

The experience of illness is both frightening and frustrating not only because of the symptoms but also because it entails a loss of control. Illness can also drive a search for quick and easy fixes, promised cures and explanations of why uncomfortable advice from health professionals is wrong. In this respect, healthcare professionals have a particularly important role in countering misinformation. Many of the professional and organisational arrangements of healthcare today are highly transactional, leading patients to take a contractual view of their relationship with healthcare professionals. This view maximizes patients’ sense of individual autonomy but leaves them open to misinformation. A collaborative patient-clinician relationship stands against this self-focused vision. The relationship can be professional, similar to that of teachers and students, but it must also be personal and enable the development of a “sense of community” that builds on the idea that “we’re in this together” regardless of differing perspectives and expertise. Such a relationship supports trust and increases the credibility of correct and corrective information provided by the clinician. This trust is pivotal to allowing the patient to be guided by clinician expertise rather than the vagaries of the Internet and social media.

The full-text version of the article The perils of misinformation: when health literacy goes awry published in Nature Reviews Nephrology is available online at
www.nature.com/articles/s41581-021-00534-z