Health literacy: a hidden problem worth talking about

Scott Palmer | 05 October 2021

You walk into the wrong class at school. You’ve never studied this subject. The teacher asks you for an answer. How do you feel?

You’re on holiday abroad and your car breaks down. You stop and ask a local for help. You’re met with a flurry of foreign language. How do you feel?

You go to the doctor to talk about your cancer diagnosis. You hear words like “malignant”, “receptor positive” and “first-line”. How do you feel?

This is how millions of people in the UK with low levels of health literacy feel when talking with their doctors. Health literacy improves lives. Whether that’s deciding the right type of cough medicine for a child, or talking to a specialist about having surgery.

Unfortunately, there are still lots of barriers to achieving health literacy. People from all walks of life regularly experience confusion, fear and shame when trying to talk about their health. What’s more, health information, misinformation and disinformation have become increasingly relevant in the past few years in the context of the ongoing COVID-19 pandemic.

The HCA webinar “Bringing health literacy out into the open.” on 14th September 2021, explored how health literacy is still a hidden problem, and how to tackle it head on. One speaker neatly summed up the problem:

Half of what a patient is told is forgotten; the other half is misunderstood.”  

They also shared a startling statistic: around 43% of the working age population in the UK do not have the required level of health literacy to calculate the recommended dose of children’s paracetamol.

Health literacy is not the burden of individual people, but relies on communities to collectively play their part. Social connections are often driven by common values and behaviours (this is known as homophily), which can result in echo chambers of people with entrenched views. These groups may be less likely to follow public health guidance. So to effectively engage with them, we need to make information available in areas in which they already live, work and play.

The importance of social media and its underuse in medical education was also discussed. The last few years have proved undeniably that social media has the capacity to win hearts and minds. What if we could use this platform to provide the kinds of tailored messages that can improve public health?  

With that in mind, relevance of communications is key. Public Health England have been working to promote positive messaging in their communications, featuring relatable characters, highlighting small steps for change, and providing tailored, accessible tools to help achieve these. The speakers all agreed that working with communities to create tailored messages was crucial to improving health literacy. We should be working more with the people we are writing for, asking them questions, and co-creating suitable content that is not only accessible but enjoyable.

The webinar also made me reflect on my experiences.

I remember one of my university professors playing us a clip from a radio phone-in about genetically modified foods. “I’ll never eat food with DNA in it ever again” said one caller. We all laughed. A lot. But what if we’d taken the time to speak to that person?

In a public lecture by the effervescent Ben Goldacre, I heard him talk about vaccine hesitancy. He gave some striking examples of times people had been let down by clinical trials and public health initiatives, citing notable cases in Nigeria and Pakistan. In this context, it’s little wonder many people don’t trust authority. Rather than poking fun and alienating people they disagree with, he challenged the audience to understand their perspective and reach out to them.

My dad’s partner hasn’t had the vaccine. She said she doesn’t want to be experimented on. Talking with her more, I found out that an expert had explained it as “the flu vaccine with some extra stuff in it”. “Some… extra stuff in it”. You can see the implications. What is the other “stuff”? Is this conversation happening all across the country?

“Provoke, relate, reveal”. This was the mantra in the science museum I worked in previously. Engage your audience immediately with a question or talking point; tie it in to their own experiences; share the information. We see public health information most of the time in sensationalised newspaper headlines, or jargon-heavy academic articles. As a result, it’s very easy for people in remote or underserved communities to draw the wrong conclusions or switch off and think this kind of information is “not for them”. It turns out, playing with a ping-pong ball “vaccine” cannon, or getting the high score in a computer game for zapping cancer cells makes people feel like science is very much for them. Provoke, relate, reveal.

This concept applies to medical writing too. Part of breaking down barriers for our audiences is about using examples from real life. We recently created an animation using mobile phones to demonstrate how cells send messages to one another. Finding these kinds of analogies can really make ideas click, and stick in people’s minds. At the same time, we have to put people at the centre of their own story. Those reading our resources are people living with cancer, diabetes and other health conditions, not “subjects”, “sufferers” or “patients”.    

Health literacy is a complex issue, but the first step we all have to take is listening to and talking with our audience, not at them.