Accessible patient information: a key element of informed consent (by Julie Smith)

Summary

Consent to treatment such as operations and diagnostic procedures can only be truly informed if the patient understands the risks, benefits and alternatives. They also need to have considered what will happen if they choose not to have any treatment at all.

A failure to obtain informed consent is not only unlawful, but can contribute to lasting physical and psychological harm.

In this blog, hub Topic Leader Julie Smith looks at the different areas to consider when creating written information that is genuinely useful to the patient. Julie’s advice also helps readers understand how they can provide information that is medico-legally sound.

Content

One in 7 adults in the UK have the reading age of between 9 and 11 years old.[1] This is a significant proportion of the population, and likely to be over-represented in the hospital setting (there is a direct proven link between health and education status[2,3]).

According to the National Literacy Trust, 1 in 5 people in the UK have ‘very poor literacy skills’.[4] So, it is imperative that we write patient information with this in mind.

People with higher literacy skills will also appreciate the clear and simple approach.

How to create accessible information

Your information may be written by an expert health professional (if it is not, it should be reviewed by at least one, to ensure its clinical accuracy). Health professionals are not trained writers, and so their writing style may need work to make it accessible. The following techniques can help you with this.

Use ‘Plain English’

Plain English must be used at all times. Some key facets of this are:

• Short sentences (UK government guidance recommends a maximum of 25 words[5])
• No jargon. Where certain medical terms cannot be avoided, they should be explained
• Clear illustrations that add to/aid the patient’s understanding. If online, these should include alt text for patients with impaired sight
• Tables, flow charts and bullet points to break up chunks of text, but only when appropriate and useful
• Appropriate font (Royal National Institute of Blind People (RNIB) recommends Arial 14 point or bigger)[6]
• Accessible formats: large print, giant print, screen readers and translations
• Easy Read versions of the information[7]
• Consistent style, point of view (first or third person) and tone of voice
• Animated/video content where possible and appropriate. This format can be adapted with voiceovers and subtitles in different languages to increase its reach.

Get expert support

There are several organisations that offer a review service for patient information, including:

• the Plain English Campaign (PEC)
• the Patient Information Forum (PIF)
• Patients Association
• the RNIB
• Mencap
• Making It Clear.

This not only helps you to create the best possible content, it also reassures patients and clinicians. Some offer accreditation based on a review of content and processes. By adding their logos to your content, you are reminding those reading it of the stringent processes it has been through.

Sign up for training

Anyone responsible for writing and/or editing patient information should also be trained appropriately. There are lots of great courses out there that can be done remotely and over a few days. If you go down this route, you and/or your colleagues should attend refresher courses at least every 2 years.

Involve patients

Where possible, patients should also be included in the process of creating information. This can happen while the information is being produced but it does not have to stop there. Once the information is out there, you can ask patients to give you feedback on it.

How can we assess understanding?

Demonstrating that patients understand information about a particular operation or procedure can be a challenge. People tend to only remember about 50% of the information given to them in a medical consultation[8]. Again, this is even lower for patients with limited education.[1]

This is why written information is often provided, so patients can go home and read it in their own time, in a space they feel is safe and comfortable, and with loved ones, so they can talk it through.

It is the responsibility of the information provider to produce content that meets all the requirements outlined above. It is the responsibility of the clinician to speak to the patient about it both before and after they have had a chance to read it. The clinician should ask questions to check the patient’s understanding and, more importantly, allow the patient to ask any questions of their own.

EIDO’s digital informed consent platform can produce timing reports that show how long a patient has spent on each page or section of the information. This can help direct that conversation as the clinician is able to see how engaged the patient has been with the information ahead of the consent session.

Final thoughts

Producing patient information must be thorough, but it does not need to be arduous. If you set up the process at the very start, you just need to follow it every time you produce something new. There are many resources out there to help and I would urge anyone involved in patient information to use them. This is how you can contribute to patients making truly informed decisions about their care. 

References

1.  National Literacy Trust.  What do adult literacy levels mean? Accessed online 15/03/23.
2.  Health Action Campaign. The role of education in reducing health inequalities. July 2021.
3.  NICE. NICE impact people with a learning disability. November 2021. 
4.  National Literacy Trust. What is literacy? Accessed online 15/03/23.
5.  Government Digital Service. Content design: planning, writing and managing content. Updated 17 January 2023. Accessed   online 15/03/23. 
6.  RNIB. Understanding the Accessible Information Standard. Accessed online 15/03/2023.
7.  Easy Read information may not meet the medicolegal standards needed to support informed consent. However, it can be   used to help a patient who lacks decision-making capacity to understand what will happen. In these cases, a health   professional or legal guardian will likely make the decision on their behalf.
8.  Patient Engagement Hit. Patient Recall Suffers as Patients Remember Half of Health Info. Patient Data Access News.   26/03/18.
9.  Laws MB, Lee Y, Taubin T, Rogers WH et al. Factors associated with patient recall of key information in ambulatory specialty care visits: Results of an innovative methodology. PLoS ONE. 2018:13(2)

About the Author

Julie is the Content Director at EIDO Healthcare. She oversees a library of leaflets used to support patients in making informed decisions about their care, with a focus on medical procedures and operations. Julie and her team are trained in Plain English, risk communication, easy-read information, translation processes and more. EIDO Healthcare uses the techniques described in this blog to produce and maintain patient information to support informed consent.