At Understanding Patient Data, we strongly believe that everyone should be able to understand how patient data is used. But we don’t always know the best way to communicate these messages to different groups.
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.
Our approach
The project involved workshops with different groups, working together to unpack and transform the often-distant concept of patient data into more accessible material. The mechanism used to achieve this was an adaptation of the Evidence Hunter Activity Pack (link), created by the charity Sense About Science, which was designed to encourage people to explore claims they encounter and use evidence to evaluate them in an accessible way.
In the workshops, participants were tasked with producing an easy read guide and talking text video. The aim was to ensure that the content and meaning of those materials resulted from the co-created knowledge and lived experience generated and exchanged within the workshops, including the words and images as well as the linguistic and cultural sense of the materials.
‘Easy Read’ is the presentation of text in an accessible, easy to understand format. There are various different ways in which information can be made Easy Read, but there is a general consensus as to observing various rules relating to text size and position on the page and keeping design elements to a minimum to stop them detracting from the information.
Participants
For this project, the workshop tutors included: patients, carers and support workers with experience of involvement in health research and co-producing accessible information; a Makaton tutor (a signing language for those with learning or communication difficulties); an NHS hospital based clinical research practitioner; and a Community Engagement Officer with The Centre for Ethnic Health Research in Leicester.
In total, twenty-five participants joined across the various workshops. Invited participants came from Suffolk and Leicestershire, meeting as separate groups. There were learning disabled, autistic, sensory and physically disabled adults, support workers and family carers. In Suffolk there was a Makaton and also a sign language interpreter support. In Leicester, The Centre for Ethnic Health Research ensured Gujarati language interpreters. A participant also joined from India in the on-line workshops, with her interpreter, a granddaughter in Leicester.
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."
Outputs
Here are the easy-read guides, as well as a talking text video where an autistic narrator reads out the guide:
- 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
- Easy-read guide in Gujarati
- Talking-text video in English (also embedded below)
These guides have been designed for—and with—people who have some additional communication needs but they could also be helpful as an introduction for anyone new to this issue.
If you’re in an organisation or team that collects, manages, uses or explains patient data then there’s a few different ways you could use them:
- Publish them on your website: download and host them on your site, on pages or areas where you explain how patient data is used.
- Use them in engagement work: if you’re running sessions about patient data, they could be used as discussion prompts or introduction materials.
- Build on this approach to create something more tailored to your work: draw on the content and approach we’ve taken here to develop your own version, more relevant to your specific context.
Future work
To ensure accessibility to even wider public audiences, Understanding Patient Data would like to undertake further translation work on the guides to include other languages such as Polish, Arabic, Bengali, Romanian, Punjabi, and Urdu. This may include further co-production sessions to ensure the translations are appropriate across different communities.
Co-production guide
As part of this project, Thinkclusive has developed a guide to co-producing accessible information to support health literacy.
Accessible information is the term used for material presented in formats that give more people an equal opportunity to understand it.
The guide is short and shares seven key learnings from the easy-read project, and Thinklusive's wider expertise in co-creation.