Patient Information Forum: How to communicate benefits, risks and uncertainties (updated 2023)

Summary

Risks and statistics are an essential part of patient information. What is a person’s risk of developing a particular condition in their lifetime, or of having a certain symptom if they have that condition? What are the risk factors for a disease, and can people change these? What is the chance of a treatment or procedure working? And what is the risk of getting the different side-effects and complications that can come with it?

Many patients are unable to comprehend basic statistics, never mind navigate their way through the reams of data that may come with health information to compare treatment options. As information producers, our job is to make sure we can guide patients through the minefield of data and figures to help them feel confident in making their own decisions.

This guide from the Patient Information Forum highlights a range of approaches and tools for unbiased communication. 

This resource covers the following topics: illustrating risk, perceptions of risk, know your numbers, explaining uncertainty, useful resources and references.

Content

Communicating risk checklist

Numbers not words

• Interpretation of words like ‘rare’ and ‘common’ varies enormously. Always use a statistic such as 1 in 100 people alongside words like rare or common.

Use natural frequencies rather than percentages, for example 10 in 100, rather than 10%.

• When giving people two frequencies to compare, make sure they are both expressed as ‘out of’ the same number. For example, 1 in 100 compared with 2 in 100, NOT 1 in 100 compared with 1 in 50.

Use absolute risk rather than relative risk

• The absolute risk of an event increases from 1 in 100 to 2 in 100, but the relative risk of the event doubles. Using relative risk in isolation can be misleading.

Illustrating risk

• A great way to improve users’ understanding of risk and statistics is to use visual aids.
• Using a mix of numerical and pictorial formats to communicate risk is helpful.
• Visual displays may be most helpful for giving people an overall pattern, whereas actual numbers can be better for communicating detail.

Perceptions of risk

• Consider using both positive and negative framing, i.e. ‘3 out of 100 people experienced this side effect, but 97 out of 100 did not’.
• Consider adding some context to your statistics. What would make a useful comparison to give people a sense of the likelihood, or to help them make their decision?

Explaining uncertainty

• Communicate the uncertainty of data or if evidence is of low quality.

Pre-empt misunderstandings

• If something is easily misunderstood, or there is a common myth, it is better to address it head-on.