Professor Gavin Giovannoni and Alison Thomson from the Barts MS Research team at Queen Mary University of London (QMUL) have received an award for outstanding use of information in multiple sclerosis (MS) care.
The award was presented at the 2015 QuDoS in MS Awards at the Beaumont Estate in Windsor, to recognise valuable contributions in improving the quality of life of those with MS.
They won the ‘Information in practice’ award for a risk communication information resource they developed to allow people with MS to make more informed choices about their treatment.
A treatment for MS, known as natalizumab, can sometimes lead to the development of progressive multifocal leukoencephalopathy (PML) - a rare and usually fatal viral disease characterised by progressive damage of the white matter of the brain.
The PML risk communication information resource, developed by the Barts MS team, explains the risk of developing PML for different patients in an engaging and simple way and allows them to make more informed choices about their treatment.
Alison Thomson, the Barts MS designer who developed the communication tool and consulted with the Barts MS Advisory Group, collected the award on behalf of Professor Giovannoni and the team.
Gavin Giovannoni, Professor of Neurology at QMUL, said: “The project started from an audit that showed less than twenty per cent of our patients understood their PML risk after reading our patient information sheet and signing consent to stay on natalizumab for more than two years. So it was clear that we weren’t very good at explaining ourselves in plain English!
“Our PML risk tools are now widely used with over two million views online, and I rarely attend meetings now without neurologists and nurses telling us how useful they are.”
To develop the tool, the team developed the Barts MS Advisory Group, and then minimised the information on PML risk to come up with an easy to read information sheet that personalises the information. When repeating the audit after using the tool, over 85 per cent of patients understood their risk of PML on natalizumab.
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