Health literacy was top of the agenda at this year’s Patient Information Forum (PIF) conference, and got me thinking about how much we assume people understand about health and care.
Health literacy has been defined as: ‘The degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions.’
Recent research has found that 43% of people aged 16-65 are unable to effectively understand and use health information, and this rises to 61% if maths is involved. This means that between as many as 21m people of working age in the UK may not be able to access the information they need to become and stay healthy.
People who generally have limited literacy and numeracy (LLN) skills – including those whose first language is not English – are likely to have particular problems, but health can be a challenging area for any of us, especially in making sense of complex information; medicines management is recognised as a particularly tough one.
You also have to take into account the emotional aspects – being in a situation where you need medical care, particularly after receiving a serious diagnosis, is bound to mess with your thinking and ability to absorb new information. Ageing can affect a person’s literacy and numeracy levels, in addition to cognitive and physical impairment making it harder for older people to hear, see, remember and make sense of what they read or are told.
Part of the problem is that health and care practitioners (and providers generally) are often unaware of the low levels of health literacy among the patient population. Professionals may think they’re communicating clearly, but do not always employ appropriate techniques to check that they have been properly understood.
There can be a real fear of ‘looking stupid’ that prevents patients – especially if they realise they have limited literacy and numeracy skills – admitting to not understanding health information, even when they are invited to ask questions.
An anecdote told at the PIF event highlights this. A man was referred by his GP for an X-ray. But when the doctor followed up with him, having not received the results, he told her he had not attended the appointment. Gentle questioning uncovered the reason why – on arrival at the hospital, he could not see a sign that said X-ray. Radiology – Ultrasound was clearly marked, but that meant nothing to him. He was too embarrassed to ask for help but simply turned round and went home.
As communicators, however hard we try to write things clearly, we’re inevitably making assumptions about the reader’s knowledge and understanding and it is only through trial and error (ideally by testing among target users before information is produced) that we can find the most appropriate language and tone.
For instance, one of the topics discussed at the PIF event emerged from a cancer charity’s review of its information using focus groups. Seemingly innocuous ‘qualified words’ like ‘may’ or ‘could’ are a real barrier to getting information across clearly, especially in reference to possible symptoms and side effects; people find them very confusing.
The consensus was that it’s better to risk being perceived as patronising with over-simplification than risk misunderstandings and unnecessary anxiety. So spell it out – ‘Some people get [a specific side effect] when they have this treatment. This does not mean it will definitely happen to you’ gets the message across. Stating the obvious (to some) is no bad thing when it comes to people’s health.