Developing an online platform to create accessible patient information leaflets

The National Literacy Trust says that 7.1 million people (16 per cent of adults) in England have very poor literacy. Having a low level of English language literacy is a well-known barrier to taking part in clinical trials.

Clinical trials are research projects that compare different treatments to see which one is best. People who are asked to take part in clinical trials are often given written information about the trial first. This information usually comes as a leaflet and should have everything people need to know to help them decide if they would like to take part.

Patient information leaflets are often long, complicated and difficult to read. This can stop people with low English language literacy taking part in trials because they aren’t being given the information in a way that is easy to understand. It can also make it challenging to translate them into different languages. Simplifying the information we provide in patient information leaflets could improve people’s understanding and help a wider range of people to take part in trials.

This project follows our previous work on the MAPLE project. The MAPLE project looked at how to make trials more accessible through better patient information leaflets. We looked at what has been written about making patient information leaflets easier to understand. We also worked with marginalised community groups, charities and patients to ask their advice. We put all this information together to make ‘best practice’ guidelines for creating accessible patient information leaflets.

Project aims

We will use guidelines from the MAPLE project and work together with members of the public, marginalised community groups, and IT experts to make an online platform. This platform will help researchers to make visual, inclusive and accessible patient information leaflets for clinical trials.

What we hope to achieve

By creating this platform to help researchers make better patient information leaflets, we hope to help make it easier for patients with low English literacy to take part in clinical trials and get better diversity in those people who take part. This would mean that clinical trials of the future will better represent the people who live in the UK.

Our partners will include:

• National Voices
• Dhek Bhal
• My Friday Coffee Morning
• The Adventurers
• PEP-R
• Lawnmowers
• MISFITS
• Chinese Community Wellbeing Society