English literacy as a barrier to participation in clinical trials (25 April 2024)

Summary

The MAPLE project led by the Bristol Biomedical Research Centre, aims to co-produce an accessible patient information leaflet (PIL) that will aim to improve diversity in those who choose to take part in clinical research. The first stage of this work is to understand the barriers preventing people taking part in clinical research and gain views on how existing, accessible PILs may address these barriers.

National Voices was commissioned to work with relevant charities and the people they advocate for to understand barriers to participation in clinical research, including, but not limited to literacy.

Content

Some of the findings and recommendations include: 

• They saw positive support for the attempt to make PILs more accessible. 
• The ability to take away a written leaflet to consider the opportunity to take part in clinical research is a strong benefit. 
• Images make leaflets easier to understand, but they must be visually literate to the information provided. 
• Leaflet wording must strike the correct balance between being simple and making people feel patronised. 
• Leaflets need to contain more information around consent, side effects, and details around getting in contact. 
• People should be signposted to additional information or alternative resources after reading the initial leaflet. 
• There must be a clear commitment to providing alternative formats for those with additional communication needs. 
• Co-production is incredibly important – and needs to go much further, being extended to the entire research process. This could overcome wider participation barriers that were not within the scope of this project.