To mark Learning Disability Week (19th-25th June), Emma Morgan, Policy and Engagement Manager, shares some of the work that Understanding Patient Data have been doing to ensure that people such as those with learning disabilities receive accessible information about patient data and are valued in their contribution to designing such information...
When it comes to communicating about or producing resources on patient data, we might make neurotypical assumptions about how best to do this – that is, we assume ‘usual’ or ‘common’ ways of thinking that are culturally or socially expected. However, this can make things tricky for people with neurodivergence such as a learning disability, where their brain works in a less ‘typical’ or ‘expected’ way. For these people, it may be beneficial to have access to a different style of communication. Wendy, a learning disability activist, works with healthcare professionals on how to better communicate with people with a learning disability. She told Mencap about how “hospitals and GP surgeries aren’t always accessible for people with a learning disability. For example, appointment letters can be hard to understand...it can be like reading double Dutch!”.
At Understanding Patient Data, we strongly believe that everyone should be able to understand how patient data is used. The Caldicott principles for the use of confidential information in health and social care includes the need to “inform patients and service users about how their confidential information is used.” Accessible information - using simplified formats that involve clear words and imagery – ensures people with learning disabilities are equally able to access information about their health data.
However, we don’t always know the best way to communicate this information to different groups. That’s why we worked with Thinklusive, Ace Anglia and the Centre for Ethnic Health Research to produce digital easy-read guides that can enhance equality of opportunity for all citizens to understand and to trust how their personal health and care data is used in health research.
We conducted workshops with different groups, including those with learning disabilities, autism, sensory and physical disabilities, support workers and family carers, to produce an Easy Read resource about patient data. The Easy Read guide presents text in an accessible, easy to understand format, such as using clear larger text and minimal distraction in design. We used the approach of co-creation - involving people who will be affected by the output in the creation of those outputs – to develop the content and meaning of the guide, allowing participants to exchange their knowledge and lived experience within the workshops to shape the resource.
Mary-Lou Owen, an artist and disability rights activist who took part in Suffolk, said: “Being part of making things like this easy-read will hopefully help someone else have a better outcome in my situation. I also know when you are faced with that pressure of life and death all sense goes out the window so easy read would be good for just anyone in my opinion."
Here are the easy-read guides, as well as a talking text video where an autistic narrator reads out the guide:
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Easy-read guide in English: there's two versions of the same document, one with Suffolk participants on the cover and one with Leicester participants
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Talking-text video in English
Co-creation - involving people who will be affected by the output in the creation of those outputs - is also a vital part of this work, as it ensures that we hear directly from those groups rather than making guesses or assumptions about what they want and need.
Building on the learning from developing the easy-read guides, Thinklusive have developed a guide to co-producing accessible information to support health literacy. The guide is short and shares seven key learnings from the easy-read project, and Thinklusive's wider expertise on co-creation.
To find out more about our work please go to https://understandingpatientdata.org.uk or drop us an email at hello@understandingpatientdata.org.uk.