Flawed public health messages must end if we are to defeat 'infodemic'

With the worlds of public and private health now closer than at any time in living memory, getting the message right is more important than ever, writes Fergus Shanahan
Flawed public health messages must end if we are to defeat 'infodemic'

People attend an anti-mask protest at Custom House in Dublin on October 3. Picture: Niall Carson/PA Wire

Words matter. Language gaps between doctors and patients are a health hazard. 

Similarly, misuse of language leads to flawed logic and ineffective public health messages. Our thoughts are shaped by words, and language influences logic, decisions, actions, and public policy.

Public policy and public behaviour concern everyone, because of their influence on personal health. Public and personal health are converging. 

Pandemics show how personal and public health are interconnected. Individual safety is dependent on the behaviour of others.

Changing public behaviour, particularly health-related behaviour, has never been easy. It requires leadership with clear, consistent messaging. If the messages are mixed or inconsistent, public trust is lost, and anger takes its place.

Pandemics like Covid-19 are a communications emergency as well as economic and leadership crises. Just as patients need to trust their doctors, the public needs to be sure it can trust its leaders, the media, and the scientific experts. 

Covid-19 has entered a dangerous phase as the public becomes more weary and wary, with rising levels of discontent with the scientific and political leadership. We cannot wait for scientific debate to become resolved over time. Moreover, when science becomes politicised or when scientists are unfairly criticised, public policy becomes fractured and incoherent — and public trust diminishes. The media share some of the responsibility for driving dissent and undermining public confidence.

An “infodemic” is how the World Health Organization described the challenge. The infodemic accompanying the pandemic is a flood of information which needs proper interpretation, and disinformation which needs to be fought. 

Social media has been criticised for much of the infodemic, mainly because of the lack of regulation and difficulty distinguishing truth from misinformation. 

Human behaviour makes fake news spread more than truth does online. 

The spread of bad news and dangerous ideas on social media is like a contagion, where messages ‘go viral’ as celebrities and influencers may become ‘super-spreaders’. Authoritative medical websites do not seem to meet the needs of everyone, with many preferring to seek the confident, intoxicating language of social media instead. 

However, if handled properly, social media can actually transform public education for the better. Moreover, the boundaries between traditional and scientific media have become porous, the latter frequently craving publicity on social media.

Misuse of language by both traditional and social media has unnecessarily escalated public alarm, and unwittingly turned some people into patients. A recent report in The New York Times referred to “a huge increase in patients who have been shedding abnormal amounts of hair” — a phenomenon believed to be related to stress associated with coronavirus. 

Commentaries on social, as well as traditional forms of media quickly transmuted the term “hair-shedding” to “baldness” and then inaccurately medicalised it with the term “alopecia”, which prompted the input of a multitude of anonymous experts peddling inappropriate therapies. 

In fact, thinning of hair is a well-recognised and common accompaniment of any form of physical or psychological stress. It is known to doctors as telogen effluvium, but should be known as transient hair thinning. It is predictable, reversible, does not progress to baldness, and needs no specific therapy other than reassurance.

Imprecise language is not confined to the media. Pandemic words describe established public health concepts, but deserve scrutiny. Why use a term like "community acquired" when we actually mean "source unknown"? 

Of greater concern is the fact that ordinary words like "essential", "necessary", "elective", "urgent", and "emergent" acquire added significance during a pandemic and have adversely affected policy on non-Covid disease. 

No one disputed the need to cancel elective operations to conserve hospital resources during the Covid-19 crisis. But elective does not mean unnecessary or non-essential. An elective operation for curable cancer is essential, whereas cosmetic surgery is elective and non-essential. 

What should a doctor say to a patient when an essential operation is postponed because it is elective? When does essential turn into urgent? How long a wait must there be until a curable cancer becomes incurable because of postponement? 

The fickle nature of words is seldom appreciated by decisionmakers distant from the frontline, but it may jeopardise the welfare of non-Covid patients.

None of this should come as a surprise. Misunderstandings and misuse of language abound in many other areas of public health. Major non-Covid public health challenges of our time have been confounded by mixed messages and confused policy. 

A recent example was the failure of health authorities and the media to explain the distinction between screening and diagnosis of disease. This confused public debate and undermined confidence in many screening programs. Simply stated: if you have symptoms you need a diagnosis, not screening. Screening is for people who have not yet developed symptoms of disease; it’s not about diagnosing people who are ill.

Long before Covid-19, the increasing resistance of bacteria to antibiotics, along with a diminishing pipeline of effective new antibiotics, was declared a public health emergency — but how many people know this? 

Control measures have been feeble, in part because the language used to describe the problem is unclear and lacks urgency. Surveys have revealed remarkable misconceptions among the public, many of whom think it is the person, rather than the infecting organism, which becomes resistant. 

Furthermore, the lack of urgency of public health messages regarding anti-microbial resistance is shown by the failure to clarify that anti-microbial resistance may be highly contagious and spreads from patient to patient in overcrowded, poorly designed hospitals. If the infectious nature of the problem were explicit, the threat to everyone would be appreciated, and the response more urgent.

Flawed language also contributes to ineffectual campaigns addressing other public health dilemmas. In some cases, public health ventures have reinforced rather than reduced the stigmatising effect of illness. 

For example, bias against people who are overweight is widespread throughout society, including the health service, and patients are reluctant to attend medical appointments when they feel stigmatised by a doctor’s language. 

No one should be defined by their illness. Person-first language is generally advocated ("the person with leprosy" not "the leper"), and has been adopted widely, but seemingly not when it comes to obesity. For example, a literature search reveals 20 times more references to "people with diabetes" than "diabetic people". The opposite applies to obesity: the same kind of search yields 15 times more references to "obese people" than "people with obesity".

As one of the biggest public health threats, one might anticipate that obesity would be tackled with a concerted, well-planned, multi-faceted strategy for management and prevention. Not so. 

Instead, there has been a stream of mixed signals, misleading messages, incoherent policies, and silo-ed thinking. At a simplistic level, overweight and obesity have been framed as a discrepancy between energy (calorie) intake and expenditure (by exercise). 

In other words, it’s the patient’s fault: overconsumption and sloth. 'Eat less and move more' is the simple solution. This leaves the individual stigmatised and guilt-laden. 

However, the energy-in/energy-out formula for weight regulation is only a half-truth, and a huge oversimplification that fails to take into account individual susceptibilities, food policies, and obesogenic environments and lifestyles such as the widespread use of energy-dense processed foods, reduction in home cooking, the growth in the consumption of fast foods, the increasing popularity of eating out in restaurants, and reduced physical activity. 

In many cases, the obesogenic exposure begins in childhood and is beyond the control of an innocent child.

Finally, for those hoping for an endgame to Covid-19, the anti-vaccine lobby is another public health threat. 

Trying to convince vaccine-deniers of the safety and effectiveness of immunisation is like trying to debate with conspiracy theorists, flat-Earth enthusiasts, and those who insist that Elvis is still alive. 

Logic, science, and repeated medical assurance of safety seldom shift their opinion. Facts don’t work, but people’s stories might. Research with other infections, such as measles, shows that real stories of what happens when vulnerable people become infected may have some impact on vaccine hesitancy. 

Public health narratives need to convey the message that public health only works for the individual if it is a collective enterprise, and fears of vaccines need to be supplanted by real messages of what happens to real people when real diseases are allowed to spread.

Fergus Shanahan, MD, DSc, MRIA, is emeritus professor of medicine at University College Cork and Cork University Hospital. 

This article is based on his new book, The Language of Illness, published by Liberties Press, available for order at: www.libertiespress.com/shop/the-language-of-illness

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