'It was like the doctor was speaking another language, I didn’t know what was going on’

How much of what you say do your patients really understand?

Our Senior Health Information Officer, Anna Seward, explains the barriers facing people with poor health literacy and how we can help patients better understand the often complex information they are given.

Health literacy is the degree to which people are able to access, process and understand basic health information and services to make appropriate health-related decisions.

For your patients - men and their families with or worried about prostate cancer - it can be the difference between confidently making decisions about tests and treatments and feeling completely lost and overwhelmed by information they can’t make sense of.

What does it mean for your patients?

People often talk about barriers to accessing healthcare, but don’t always recognise poor health literacy as one of the most significant and widespread barriers. It can affect people’s ability to:

  • navigate the healthcare system
  • understand health campaigns and concepts such as risk (of side effects, for example)
  • talk to health professionals about their medical history and symptoms
  • understand and manage their own conditions
  • make informed decisions about their own health
  • participate in shared decision-making
  • follow treatment plans and medicine regimens.

But shouldn’t we give people more credit for understanding basic medical concepts?

When your work environment immerses you in medical terminology, it’s easy to forget that other people don’t always speak your ‘language’.

But poor health literacy isn’t always about intelligence or reading ability and doesn’t just affect a small section of the population. In fact, 1 in 5 adults can’t read and understand simple labels on medicines. And 43% of working-aged adults in England are unable to make sense of everyday health information. That means that more than 2 in every 5 people might struggle to calculate a child’s dose of paracetamol; or discuss a medical condition with their doctor; or make sense of the information they find online.

And it’s also about people’s ability to make sense of complex information at difficult times, such as when they may be reeling from a potentially life-threatening diagnosis.

But what does it really look like?

If the numbers above don’t convince you, perhaps some real-life medical misunderstandings will, such as:

  • The woman who didn’t attend further appointments because her breast biopsy was positive. She thought positive was a good thing.
  • The man who didn’t turn up for his cancer tests because he couldn’t see a sign for ‘X-rays’ and was too embarrassed to ask for directions. He didn’t know that Radiology departments do X-rays.
  • The man with diabetes who stopped taking his medication, rather than ‘admitting’ that he didn’t understand the instructions.

So how do we tackle the problem here?

To support you in helping your patients get the information they need, we have a wide range of easy-to-understand resources, such as our booklet for men who’ve just been diagnosed and our pocket-sized guide to the PSA test.

When we produce our patient information, we try to explain things as simply as possible and use good design principles so that people get clear, evidence-based information to understand their situation and make decisions.

So, we write in plain English – explaining medical jargon and writing in simple, conversational language in short sentences. And our information is broken up into short chunks, in a good-sized, clear font, so that we don’t overwhelm people with text.

We use simple diagrams, to help people visualise what’s going on in their body. And we have a number of animated films – such as Understanding your prostate cancer and What is fatigue? which can be used in clinics or waiting rooms.

We also know that people often struggle to find the information they need online – so we make sure all our online information is easy to find, well-designed and easy to navigate around.

And we double-check we’re getting it right

All our health information is reviewed and tested by health professionals like you and most importantly your patients. And we also ask for feedback from people once it’s published.

It was the only place I found easy to understand, non-academic explanations.

You can find all of our health information at prostatecanceruk.org/information.

And we always love to hear what you think. If you have any feedback on our patient information, or would like to help review any of our publications, let us know at yourfeedback@prostatecanceruk.org