What is the project?
Working with Understanding Patient Data, Ace Anglia and Thinklusive, The CEHR supported the development of an easy guide and talking text video, to help make information about patient data more accessible.
The project involved workshops with different groups, working together to unpack and transform the often-distant concept of patient data into more accessible material. 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.
The accessible resources explain how patient data is used and the role of large-scale health datasets in research. The easy-read guide has been co-created with ethnically diverse adults with learning disabilities based in Suffolk and Leicester. The CEHR has led the translation of this guide into Gujarati.
What is the aim?
To produce an easy read guide to enhance equality of opportunity for all citizens to understand and to trust how their personal health and care data is used in health research.
Who is involved?
Understanding Patient Data
Thinklusive
Ace Anglia
The Centre for Ethnic Health Research
Useful Links
Contact
Barbara Czyznikowska – bmc15@leicester.ac.uk