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  • Accessibility: how do we make sure our information meets patient-safety standards?


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    Summary

    We all have a right to receive information about our own health in a way we can understand. There is no excuse for poor-quality, inaccessible, information that excludes people. In this blog I will consider how these needs can be met and the implications for patient safety if they are not. I have written about accessible information in the past but in this blog, I will dig deeper into some specifics, namely:

    1. Special educational needs, learning difficulties and disabilities.
    2. Visual and hearing impairments.
    3. Dominant language. 

    If you’re interested in accessible information, I’d strongly recommend you familiarise yourself with the Accessible Information Standard – this is a standard that the NHS and adult social care have to adhere to by law when it comes to communicating with the general public. This blog will give some tips on how you can make sure you meet this standard. 

    Content

    Special educational needs, learning difficulties and disabilities 

    It isn’t always easy to explain complex healthcare information in a clear and accessible way. This is particularly true if the reader has special educational needs, learning difficulties (such as dyslexia) or disabilities (‘additional needs’). But these people have the same right as everyone else to access information that enables them to safely manage their healthcare needs. If a patient is unable to read a letter inviting them to a hospital appointment, can’t make sense of a complicated leaflet about their medication or finds pre-operative advice confusing, their safety is compromised. 

    Easy Reads

    It's important to consider whether you can make one version of the content you create accessible to all, or if it is more appropriate to create ‘Easy Read’ versions. This is what my team do with our information library about surgical procedures. We recognised that the content we create for the purpose of supporting informed consent can be quite complex. While, of course, we make sure it is written in plain English, the level of detail needed for consent is still often not appropriate for someone with additional needs. 

    The content in our Easy Reads: 

    • is significantly shorter
    • uses lots of pictures and photos  
    • uses a larger font. 

    Important information that can impact on patient safety, such as what you should and shouldn’t do before and after the procedure is highlighted. Having Easy Read versions of our leaflets (that have been worked on by a specialist in Easy Read information) helps to reassure clinicians, patients and carers, that patient safety has truly been considered. 

    Dyslexia-friendly information 

    One in ten people in the UK are dyslexic[1] If you are creating written information, the learning difficulties faced by someone with dyslexia need to be accounted for. There are some simple changes you can make to your content such as font type, size, layout and use of white space. The British Dyslexia Association has a free-to-use style guide on their website.[2] 

    Visual and hearing impairments 

    We all consume information every day, be it on our phones, our computers, our TVs or even good old-fashioned books, newspapers and leaflets. For most of us, the standard delivery of information is suitable, and we don’t need to give it a second thought. For many, however, these formats simply do not work for them. 

    According to the Royal National Institute for the Blind, more than 2 million people in the UK are living with a level of sight loss that impacts their daily lives.[3] According to the Royal National Institute for the Deaf, 12 million people in the UK are deaf, have hearing loss or tinnitus.[4] Those are not small numbers. 

    Fortunately, technology can be a great help and quickly resolve accessibility issues people for with visual or hearing impairments. Unfortunately, this is not always used, and people often get forgotten or excluded. Again, it may seem obvious to say, but the risk this can present to patient safety is huge. Sending someone who is blind a letter about an urgent hospital appointment that is not written in braille or any other accessible format could literally mean the difference between life and death. Leaving a voicemail for a deaf patient about a new date for their procedure could result in lengthy delays to, potentially critical, treatment. 

    Formatting options

    It is the duty of the organisation supplying information to know what needs their users have and provide for them accordingly. In my line of work this means making sure all of our written content is available in accessible formats. For example, our library can be downloaded in large and giant print. We make sure our content can be read by screen-readers. All of our video content comes with a voiceover and captions and all of our illustrations include alt text (this is ‘alternative text’ that describes the image). 

    Most computer programmes come with this technology inbuilt and as AI develops at speed, automated captions, screen readers and alt-text generators are getting better and better. 

    For face-to-face or video content, the use of sign language for deaf patients could make a real difference to how they engage with their care. 

    Dominant language 

    Around 8 in 100 people in the UK do not have English (or Welsh in Wales) as their first language, according to the 2021 census.[5] This amounts to around 5 million people. Of that 5 million, the top two nationalities represented are Polish and Romanian.[6] These countries have their own national languages and so it is likely that most Polish and Romanian people did not grow up speaking English.

    While it is not always practical or feasible to have all information in all languages, it is important to consider the demographics of the people receiving healthcare information. You may wish to translate your information into those most common dominant languages as a starting point. It is also useful to monitor events that may impact that demographic. For example, following Russia’s invasion of Ukraine in February 2022, we translated our most common procedures into Ukrainian and Russian. This was to make sure that refugees fleeing the war had access to safe, up-to-date information if they needed surgery while living in the UK. 

    Again, technology can help with this, especially if you are a small organisation or charity with a limited budget. The advancement of AI and machine translation means that information can quickly and cheaply be translated into most languages to a fairly high standard. However, I would urge anyone using AI technology for this purpose to involve native speakers of that language with relevant clinical expertise to review the content. Simply putting it through machine translations and then sharing with patients is not a safe option. Human translations should always be the first option if your budget allows. 

    For face-to-face patient interactions, a professional interpreter may be needed. This requires forethought and planning. Health professionals must, where possible, familiarise themselves with those patients who are likely to need interpreters so they can be organised in advance of appointments. Simply relying on a family member or friend is not advised. This could present a serious risk to a patient as the dynamics of that relationship, or the ability for that person to accurately interpret information, are likely unknown. 

    Summary 

    There is so much that can be said about accessibility challenges and solutions and it’s impossible to cover it in a single blog post. The key point that I’d like you take away from this, though, is that without patient engagement, we do not have patient safety. Information needs to be accessible in order for patients to understand it and make informed decisions. There is a wealth of resource and support available and most of it is free. I’ve listed just a handful of these below. 

    Useful resources/further reading 

    Read more blogs by Julie Smith

    References 

    1. British Dyslexia Association (accessed online, 14/02/24).
    2. British Dyslexia Association, Creating a dyslexia friendly workplace (accessed online, 14/02/2024).
    3. Royal National Institute for the Blind (accessed online, 14/02/24).
    4. Royal National Institute for the Deaf. Prevalence of deafness and hearing loss (accessed online, 14/02/24).
    5. Office for National Statistics, 2021. Language, England and Wales: Census 2021
    6. Statista, 2021. Non-British population of the United Kingdom in 2020/21, by nationality (accessed online 14/02/24).

    About the Author

    Julie Smith 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. Julie is also the hub's Topic Leader for Patient Information.

    Julie is a healthcare editor by background and previously worked at MA Healthcare as Editorial Director, overseeing 25 healthcare journals. She is a member of the PIF TICK steering group and a Trustee and Board Member of the Lindsay Leg Club Foundation.

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