“At the MS Trust QuDos Awards ceremony on Saturday night we won the award for our PML risk communication information resource. It was unexpected, as over the last decade or so we seem alway to get the runner-up slot when we have been entered into these kind of awards.”
“I must firstly thank Alison Thomson our designer in residence of developing the tool with our Barts-MS focus group. Thank you. Secondly, thank you Alison for entering us into the competition; if it was left up to me I would not have got around to doing it. Thirdly, thank you Alison for attending the awards ceremony on Saturday night to collect the award. I hope the message is loud and clear; ‘what would would we do without Alison?’ The one mistake Alison made was submitting the entry under my name; she did all the work. Joking aside the Barts-MS PML risk tools (PDF version and Web App) are widely used. I rarely attend meetings now without neurologists and nurses telling us that they preferentially use our tool(s) to communicate PML risk rather than other available resources. The PDF versions of our PML Risk Communication tool has had over 2 million views.”
“The PML risk communication project started from an audit that showed less than 20% of our patients understood their PML risk after reading our patient information sheet and signing consent to stay on natalizumab more than 2-years. Appalling, yes; we are not very good at explaining ourselves in plain English! Alison then set about designing a communication tool. To do this she arranged several MS focus groups, including patients from our service. She stripped back all the information and came up with an easy to read and understand information sheet that personalises the information. When we repeated the audit after using the tool over 85% of our patients understood their risk of PML on natalizumab. This is a clear example of less being more and the need for design in clinical practice.”
“I would also like to thank Biogen for providing the grant that allowed Alison to pay the developer to convert the paper-based tool into a web App. In addition, Biogen have always been willing to provide us with up-to-date information on PML. Biogen’s transparency and willing to collaborate on this project is part of a much bigger success story. I suspect most other pharmaceutical companies would have simply pulled natalizumab from the market as a result of PML and run a mile. Not Biogen. Biogen at the time recognized the unmet need for a treatment for MS that offered greater efficacy for people with highly active MS. Instead of putting their heads in the sand they invested in a large research programme to understand PML, the risk factors associated with the development of PML and what was needed to make the use of natalizumab safer in clinical practice. Their research programme provided us with a validated JCV serology assay, the data that our risk information communication runs on and several algorithms for monitoring patients on natalizumab. It is hard to imagine the management of MS in the modern era without having natalizumab available as a therapeutic option.”
CoI: multiple, Biogen provided an unrestricted grant to pay the developer for the online Web App
8 thoughts on “ClinicSpeak: QuDos MS Trust Award for PML Risk Communication”
Kudos for presenting critical information in a comprehensible format. I love that chart.
Thank you, Alison, and congratulations on the recognition of your work. Two million views and counting should let you know I'm not alone appreciating the results of your work which has benefited so many.
Congrats for the award! Alison, you've done a great job. When I first saw the PDF (recently) it was like 'this is so clear'. 🙂
lol you had me going until you started thanking biogen with the same praise as alison.
Thank you Alison
This is Amazing information!I'm assuming BioGen approved the app as my neurologists tell me that if I'm JCV+, the risk is 1/1000 no matter my titre level as explained by BioGen to them. If it is approved by BioGen, then shouldn't the app be made public by BioGen?If we follow your tool , and titre levels fluctuate, shouldn't JCV +ve Msers be tested regularly? If so, how often?Thanks so much for such information!!! I feel a little bit positive everyday I read your updated posts.
Can we do a write up on this to help draw attention to PML Risk tools for folks in the colonies?
I dont see why not