Monday, June 8, 2020

We are not all in this together: public understanding of health and science in the time of COVID

Christina Zarcadoolas, PhD  
June 8 2020

Ask adults in the US if antibiotics kill viruses or bacteria and many will respond incorrectly.  As for naming the steps in the scientific method half are in the dark.  And probe the purpose of a control group in a new drug’s development and you’re likely to get blank stares from half the population.  Less than 25% understand what it means to study something using the scientific method. Less than 1/3 of the population is science literate.  Trust in science is also fluid.

It’s not a stretch to conclude that the public is showing up unprepared to take in, understand and use the current science and health information experts and the media are using to talk about COVID19  - chain of transmission, modeling, flattening the curve, social distancing, high throughput vaccine development, antibody testing and immunity passports.

I didn’t write this piece in 2005, in 2009, or in 2014.  Maybe because those complex emergencies - Hurricane Katrina, H1N1 the Ebola outbreak - were shorter lived, the public misunderstandings had less time to play out on TV and social media.  And, public health’s focus quickly defaulted back to the perennial issues – chronic disease, obesity, smoking, STIs, mental health.  We all moved on.

But this pandemic is very different. I do not recall a time in my professional life studying public understanding of health and science when it has been more important for everyone to get engaged and try to understand some of the science and do so while we are simultaneously witnessing science and scientists aggressively diminished by powerful influencers turned snake oil peddlers and conspiracy theorists. 

The changing calculus of this pandemic is being scratched out in chalk marks.  The science is dynamic and uncertain.  So too the attention, understanding and staying power the public has.  I listen endlessly to TV coverage, social media and zoom-bounded sessions with friends and colleagues as we try to string together pieces of often-conflicting messages. Should we wear facemasks? How does social distancing really work?  Can it work if some don’t practice it?  Does having antibodies mean we are immune to COVID? When can we open the country up again? Will there be a second, deadly wave?  

While many of us may not need or want to understand what Dr. Fauci means when, during a White House Task Force Meeting (4/17/20), he reports that a recent virology study sequenced the virus gene and its mutations in bats and confirmed that the virus was an instance of zoonosis. But it’s likely we do want to understand what Dr. Birx means when she says: [We want to have a test] that is efficient.  To let people know who has been positive or immunity.  That is critical to epidemiologists and public officials, to know what the penetrance of a virus was in a community when all you’re seeing is the serious cases and testing the most symptomatic.  (Briefing, 4/10/20)

The antibody piece is critical, as you described, because at this time, we can't - if we have - let's say asymptomatic status is inversely - symptomatic status is inversely related to age, and so the younger you are, the more likely you are to be asymptomatic: We have to know that because we have to know how many people have actually become infected.

War, famine, tsunamis, emerging infectious diseases, pandemics.  Complex emergencies always foreground health disparities and inequities. Of the more than 50,000 dead in the US, blacks and ethnic minorities are disproportionately impacted.  Despite the surprise among some politicians, it’s our ongoing societal shame.  Enfolded in this fault line is another deadly fissure. It is the persistent gulf between those who can engage with and understand some of the complex, conflicting and changing health and science information about COVID 19, and all the rest who can’t. 

Low Health and Science Literacy
In the early 90s, as a result of the growing awareness of the literacy divide, public health experts prescribed a “prescription to end confusion” – advocating for developing “linguistically and culturally appropriate” health information, especially for the low health literate. Essentially they called for simplifying the complex language of health.  The roots of this approach are found in English as a Second Language (ESL) instruction of the 70s and early 80s.  Using health literacy principles became inseparable from efforts to “simplify”, make information “easy-to-read” and present in “plain language”.  The popular wisdom - simple information will yield improved health literacy, and thus improved health behaviors and better health outcomes. 

Over the years my work has involved reviewing lots of health information to determine readability and usability. Looking at these simplified texts as much I have, I’ve seen a growing pattern of minimal or non-inclusion of basic science concepts and information.  Much of this overly simplified information has little ability to prepare the public to better understand and take actions   in the face of complex health and especially a complex emergency like COVID19.  (I’ve written about this at length elsewhere: The simplicity complex: exploring simplified health messages in a complex world, Health Promo Intl 2010).)

Either because public health messengers feel that it’s too complicated for people or they don’t think people are interested enough, there is a general stinginess with the science and the “why” behind health recommendations.  As I hope to demonstrate in the examples below, simplification as commonly practiced in public health, especially for low health literacy audiences, is communication by subtraction and substitution.  It distills out basic health and science concepts that are fundamental to understanding complex emergencies.

The following are three common weaknesses of simplification.  They warrant reassessment, asking, can this message truly prepare the public to understand and make informed decisions in the face of a complex emergency such as COVID 19?

1.  Poor writing: This first example demonstrates the dominant methods used to “simplify” a text/message: use simple vocabulary in simple sentences that are one line in length. Use a readability formula to check the reading level.

These sentences may be “simple” on the surface but they put real demands on the reader.  The staccato of these five disconnected statements would strike any fluent reader as odd and unsatisfying.  This type of writing runs counter to accepted reading and information processing theory and practice. In this short text there is just not enough information, stepping stones, to make good inferences. It’s like giving someone a puzzle and saying “Here you go.  You figure it out.”  Yet its format is ubiquitous, especially among those writing for low literacy and low health literacy audiences. 

Reading involves making meaning across sentences and paragraphs.  A well-written group of sentences helps the reader make those connections and make meaning.  We don’t read an informational text such as the one above as if it were a page from telephone book. At minimum these five sentences could be reimagined as:

Vaccines protect us from many kinds of illnesses like measles, polio and the flu. But right now there is no vaccine for the virus called Coronavirus. (And) we can’t use antibiotics to fight Coronavirus because antibiotics do not kill viruses.  Antibiotics kill bacteria. So doctors are working to develop (make) a vaccine but this could take a year or more.   

2.  Gatekeeper Choices
All health communicators/educators curate the information they produce for their audiences, making decisions about what to leave in and what to take out.  Developers of messages for low health literacy and low literacy audiences often are heavy handed, choosing to delete the very information that would teach the consumer about science and advance health literacy.  Such a deletion decision is evident in the following post by a social media influencer in health literacy, regarding COVID:
Ditch “novel.” Normally, we might swap “novel” for “new” in plain language materials, but “the new coronavirus” sounds a bit like a shiny new car. And at this point, COVID-19 doesn’t feel so novel anyway.

In the context of the pandemic, and all emerging infectious diseases more generally, the words “new” or “novel” have great significance and import.  We would want a health consumer to learn that “new/novel” signals important ideas: people don't have immunity (a way to fight this disease well); scientists will be learning a lot about the virus and therefore the known science will be changing a lot, there is no vaccine etc.

Think about it.  It’s ok to introduce Sesame Street audiences to ”coronavirus” and “Covid 19” (CNN Sesame Street Town Hall on Coronavirus)
but “new/novel” would confuse an adult who may read poorly or have low health or science literacy?

3.  Prescriptive/Directive Messages
Akin to omitting foundational information, you often see public health rely on basic hygiene messages.  These messages use graphics/illustrations and minimal text. Below are two examples.  The first, from H1N1 (2010), and the second, COVID 19.

There is every reason to communicate clear, direct risk and prevention messages.  It is a major goal of public health. I recall during the Anthrax incident of 2001 it took only one short message for me to immediately change my behavior – “Do not microwave your mail.”   These posters are excellent examples of this standard hygiene message. Disseminated widely, they have staying power.  However, often what is not given as much attention however, is follow-up messaging about the “why” of each of these directions.  For example, why should I throw the tissue away? Why shouldn’t I touch my face?  Currently social distancing is proving to be a thorny behavior to get many Americans to adopt, and part of the problem may be that they do not understand the “why” – the transmissibility of this virus.

There are no doubt good, highly readable examples of simplified health messages.  These are the product of good writers, well informed about their content and target audience.  But that’s not what I’m writing about in this piece. Poorly designed simplified messages have contributed to a dangerous double jeopardy.  Too much of “simplified” health information is not letting people in on the story.  The commons is not a place for them. Presented with a diet of this “simplified” information has created a situation where at-risk audiences cobble together sound bites from mainstream media, politicans, social media and pseudoscience then reinforced by their peers, all picking over the same sub-standard information.

This will never be sufficient to engage more of the public with how to respond to a complex health issue like a pandemic. Why should I persist with social distancing if this is just like the flu?  (Public health officials missed the opportunity to strongly reinforce how flu is.  Tens of thousands of people still die every year because of seasonal flu and we have a vaccine! If I don’t understand anything about how “efficient” this virus is, why should I wash my hands so much? If I don’t have some working idea of what antibodies are I can’t understand why my state won’t open back up until we have proper testing.

This prolonged, tragic pandemic has many in expert positions reassessing and reimagining a post-pandemic world.  Boundless simplification of health messaging for the public is an undertow we should be wary of.  Un-interrogated it has the real risk to recapitulate inequity and deny access of many to the information commons. The goal should be to develop new ways to clarify and communicate health information and advance public health and science literacy.

Author and physician Reid Wilson, Epidemic: Ebola and the Global Scramble to Prevent the Next Killer Outbreak, reflected on what occurred during the Ebola outbreak and how it relates to today's Covid19 pandemic.  He discusses the powerful example of how people in West Africa changed their burial habits during the Ebola outbreak. Liberians began cremating their dead, changing a thousands year old cultural burial tradition. They did this in order to protect themselves and their community. Reid connects this to Covid19:

"People are intelligent. And if you give them the proper information on how to protect themselves they will go as far as to change the practices that their culture has used for of a thousand years in order to protect themselves in the short run from a virus.  That tells me we have to put a premium on disseminating intelligent, timely and correct information.  Giving the people the tools to protect themselves would save a lot of lives." (Reid Wilson 4/9/20 NPR)

In 2005 thousands were stranded at the New Orleans Convention Center. They lacked information and the means to stay safe. I sat in front of the TV around the clock, shaken and furious.  Not since then, until COVID have I confronted so dramatically that we are not all in this together.   We must work to be.

 Christina Zarcadoolas 
June 2020

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