MS Brain Health newsletter – June 2021
Dear supporters
- MS Brain Health global impact – survey findings
- Our influence on MS services
- MS Brain Health standards in MSIF’s Atlas of MS
- New look for our website
MS Brain Health global impact – survey findings
In our last newsletter we invited readers to complete a survey to provide insight into our global impact. Thank you to all who participated!
A total of 100 people gave feedback, a mix of healthcare professionals (69%), people with MS (25%) and others working with the MS community. Of the 20 countries surveyed, 16 have seen changes to clinical practice in response to MS Brain Health recommendations and consensus standards.
For a concise, visual summary of the key survey findings please see our 1-page infographic. More detailed information about the survey aims, development, participants and results can be found in our slide summary, also on Our impact page, under Downloads.
MS Brain Health global impact – survey findings
In our last newsletter we invited readers to complete a survey to provide insight into our global impact. Thank you to all who participated!
A total of 100 people gave feedback, a mix of healthcare professionals (69%), people with MS (25%) and others working with the MS community. Of the 20 countries surveyed, 16 have seen changes to clinical practice in response to MS Brain Health recommendations and consensus standards.
For a concise, visual summary of the key survey findings please see our 1-page infographic. More detailed information about the survey aims, development, participants and results can be found in our slide summary, also on Our impact page, under Downloads.
Our influence on MS services
MS Brain Health recommendations about timely management have influenced regional and national MS care pathways and policies in several countries, resulting in changes to best practice guidance for MS care. Overall, 93% of survey respondents noted improvements to MS services and management, either already made (84%) or likely.
Investment in MS care has also increased in some centres, with better patient support materials, improved access to disease-modifying treatments, more staff resources and improved diagnostics (see slide summary for details). These and other findings illustrate the global impact of MS Brain Health on MS care.
In a triMS.online virtual global conference held in May 2021, Professor Jeremy Hobart outlined how MS Brain Health standards have provided a benchmark to assess service provision in his centre in Plymouth, UK. Professor Hobart also presented a UK case study of the challenges faced by MS services, based on a recent nationwide audit. Other countries may face similar challenges. The presentation is available to view on our YouTube channel.
Although triMS.online is aimed at MS healthcare professionals and researchers, a virtual conference for people with MS will take place later this year, and we are thrilled to announce that MS Brain Health will be taking part. Look out for our next newsletter for further details.
MS Brain Health standards in MSIF’s Atlas of MS
The Atlas of MS 3rd edition was published in April 2021. Part 2 of this resource focuses on clinical management and shines a spotlight on the barriers to accessing diagnosis and disease-modifying therapies globally. It also highlights the important role that guidelines and standards can have in improving MS care, with a section dedicated to the MS Brain Health quality standards (page 37). The report emphasizes that better data collection is needed to enable more countries to integrate the Brain Health standards into their national plans for MS. We are committed to supporting this goal, by promoting our standards widely and developing a quality improvement tool to help MS centres measure their progress.
New look for our website
Almost 6 years since the launch of our Brain Health report, we have given our website a new look and streamlined the content. Resources for people with MS and for healthcare professionals are now grouped separately, making navigation easier. We are also developing summaries of recent evidence to support our report recommendations – look out for news about these, via our newsletters, our LinkedIn page and Twitter updates.
We welcome your feedback on our new website. Please click the link below to complete a short poll.
Click here to take part.
We would love to hear your thoughts about our activities and any ideas you have for increasing the impact of our work. Please keep in touch, follow our posts, and email us!
You can follow us on Twitter @MSBrainHealth and on LinkedIn to keep up with the latest news.
Thank you for your continuing support!
Gavin Giovannoni, MD
Professor of Neurology and Chair of the MS Brain Health Steering Committee
On behalf of the MS Brain Health Steering Committee: Gavin Giovannoni, Peer Baneke, Helmut Butzkueven, Tyler Campbell, Jelena Drulovic, Jodi Haartsen, Jeremy Hobart, Stanca Potra, Mitzi Williams and Tjalf Ziemssen
The MS Brain Health initiative is funded by grants from Actelion Pharmaceuticals and Bristol Myers Squibb and by educational grants from Biogen, F. Hoffmann-La Roche and Merck KGaA, all of whom have no influence on the content.
