Communicating benefits, risks and uncertainties – HTML version

Why this matters

Communicating benefits, risks and uncertainties is an important part of patient information. 6 in 10 people aged 16-65 are unable to understand health information if numeracy skills are required[1]. As information producers, our job is to help people feel confident in making decisions about their health.
 

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.

This guide supports the following PIF TICK criteria:

• 4.0 Evidence: Information is based on reliable, up-to-date evidence which is communicated clearly.
• 5.0 Involving users: Users are involved in the development of information.
• 6.0 Health inequalities: Information is written to meet health and digital literacy, language and accessibility needs of the target audience.

Reference

1. A mismatch between population health literacy and the complexity of health information: an observational study. Gillian Rowlands, Joanne Protheroe, John Winkley, Marty Richardson, Paul T Seed, Rima Rudd. https://pubmed.ncbi.nlm.nih.gov/26009533/

Communicating risks and benefits in a balanced way supports people to make their own values-based decisions about their health and what matters to them as an individual.

Everyone is different and will come the individual decisions based on the same data. This is a fundamental principal of personalised care.

To ensure that access to shared decision making is accessible to all it is important to communicate data in ways everyone can understand.

Co-producing to discover the risks and benefits that matter most to patients, and finding ways of presenting data that work is an essential component of risk communication.

You can find out more in our guide Co-production: Involving user in developing health information and our poster Co-production Matters.

Balancing the presentation of information and options in patient decision aids: an updated review. (2013.) Abhyankar P, Volk R, Blumenthal-Barby J, et al., 13(Suppl 2). BMC Medical Informatics and Decision Making.

bmcmedinformdecismak.biomedcentral.com/articles/10.1186/1472-6947-13-S2-S6

When discussing risks and benefits with a patient… include both positive and negative framing (for example, treatment will be successful for 97 out of 100 patients and unsuccessful for 3 out of 100 patients.

A Demonstration of “Less Can Be More” in Risk Graphics. 4b Zikmund-Fisher BJ, Fagerlin A, Ubel PA (2010). Med Decis Making. 30(6): 661–71.

https://pubmed.ncbi.nlm.nih.gov/20375419/

Taking a ‘’less is more’’ approach by omitting redundant mortality outcome statistics can be an effective method of risk communication and may be preferable when using visual formats such as pictographs.

Symbols were superior to numbers for presenting strength of recommendations to health care consumers: a randomized trial. (2007.)

Akl EA, Maroun N, Guyatt G, et al., 60: 1298-1305.. J Clin Epidemiol.

https://www.jclinepi.com/article/S0895-4356%2807%2900109-6/fulltext

Most participants were adamant that they did want to know the full picture...They indicated a preference for information that is balanced and includes a careful and honest assessment of the pros and cons of treatment.