The MAPLE Project
Making trials more accessible through better patient information leaflets – The MAPLE Project
Over the past 18 months, The Misfits have been working with Emma Johnson from Bristol University on the MAPLE project. MAPLE aims to reduce the exclusion of those with lower English language literacy in clinical trials by co-designing practical resources to help researchers create visual, inclusive, and accessible Patient Information Leaflets. Emma worked alongside our group to help make the information more accessible for people with learning disabilities. She spent time liaising with the group and getting feedback from them throughout the project, ensuring that their voices and opinions shaped the design of the template Information Leaflet and accompanying guidance.
The MAPLE project also involved many other organisations including The Brandon Adventurers, Chinese Community Wellbeing Society, The Lawnmowers Theatre Company, Patient Experience Partnership in Research Group (PEP-R), My Friday Coffee Morning – Barton Hill, Dhek Bhal and an Eastern European PPI Group, to help them design the resources. To ensure even broader representation, National Voices also brought together a group of charities and patient advocates experienced in public involvement. It has been fantastic to know that the research team managed to gather feedback from so many voices, helping them in their research.
To learn more about MAPLE and access the resources we helped to develop visit www.maple.bristol.ac.uk
Here is some feedback from our members and their thoughts on being involved in this project;
Beth, ‘It was good that I had a chance to choose which easy read pictures I thought were good to go with the words. I like to help to do easy read material and help to choose the pictures used for the research’.
Claire, ‘It was important to me to be part of the project and having my voice heard as someone with a learning disability’.
Jane ‘I thought is was informative and I thought it was interesting as you listened to our voices. It made me feel good about helping and getting our voices heard’.
Bill ‘It was nice to put my voice across and help in this project’.
Emma Johnson also gave us some wonderful feedback about working with The Misfits;
‘It’s been such an amazing experience working with the Misfits on MAPLE. I am so grateful that the group wanted to be involved in the project, and that they were willing to share their opinions and views with me. I have enjoyed every meeting, it’s been a privilege’.
