Considerable advances have been made in multiple sclerosis (MS) over the past 20 years, providing a range of treatment options and new studies examining different areas of the disease.[1] But despite ongoing research and increased understanding of the disease, the exact cause remains unclear and there is still no cure.

This only serves to make me and my team more determined – at Janssen Neuroscience, we have an ambitious goal – to ensure a future where we can predict and prevent some of the world’s most devastating and debilitating nervous system disorders, including MS. We are, however, not the only ones – nowhere is this collective determination and scientific progress more apparent than at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) congress. Now in its 38th year, this year’s hybrid-format meeting provided a vital platform for collaboration amongst the MS community, facilitating important discussions and sharing discoveries that will shape future trends in managing and treating the disease.

All the sessions I attended virtually were interesting, insightful, and important in furthering our understanding of MS, but I wanted to take a moment to share three discussion areas that stood out to me.

MS and the impact of COVID-19

COVID-19 had a major impact on our lives, and the implications of continuing to live with this and with new emerging viruses, and dealing with potential future pandemics is a real concern. So, it was no surprise that it featured heavily throughout this year’s ECTRIMS scientific programme.

Topics included its impact on access to quality care, management of relapses, the short and long-term effects of the disease and the clinical implications of immunisation. There was also a lot of discussion centred around what the future looks like. It was only recently that Tedros Adhanom Ghebreyesus, General Director of the World Health Organisation WHO told journalists ‘We are not there yet. But the end is in sight’ and so with this realisation that COVID-19 is here to stay, we must continue to explore what this means for people living with MS.[2]

The ongoing discussion around harnessing digital innovations was particularly interesting. A recent study of neurologists conducted by ECTRIMS found that almost three-quarters (73%) of clinicians implemented virtual consultations for the first-time during the pandemic.[3] We’ve seen the adoption of technological solutions accelerate at pace across the whole healthcare landscape.[4] Whilst for many patients it is a positive experience, enabling conversations and continued dialogue with their healthcare team; for others, it can be more impersonal, intimidating and scary.[5][6] Evidence from studies have demonstrated a generally higher uptake amongst those living in better socioeconomic conditions, who have a higher familiarity with technology.[4]

I think everyone was in agreement that through an understanding of what works and what does not, we can ensure that future digital technologies better reflect the spectrum of individual patient needs and experiences, ensuring that as many people benefit as possible. Helping people living with MS will have its own unique challenges, particularly in a virtual setting where it is not as easy to identify invisible symptoms. But there was a clear understanding that we need to make a continued effort to weave these learnings into the way we manage MS – whether healthcare professional, MS nurse or patient advocacy community – we all have an important role to play.

Importance of shared decision-making between patients and healthcare professionals

The importance of shared decision-making between people living with MS and their healthcare professional team is something I feel strongly about in all therapy areas but particularly in MS, and so it was fantastic to see so much discussion around its application and areas for improvement throughout the congress.

Shared decision-making as a concept involves empowering patients with relevant and engaging information to make informed decisions about their treatment approach.[7] Patients and healthcare providers then make an informed treatment decision together; based on a mutual understanding of treatment options, their pros and cons, and potential impact on a patient’s life.[7] I think most of us agree that this approach replaces an outdated and hierarchical engagement, whereby healthcare professionals simply instructed patients on which treatment they would receive.

The clinical significance of shared decision-making should not be undervalued. It enables the flexibility to manage each patient’s needs at different times in their lives.

This flexibility is especially important given that most patients are diagnosed with MS between 20-40 years old: a period in our lives when many of us go through significant personal and professional change.[8] MS treatment approaches also need to consider and aim to reflect these life changes accordingly. Treatment plans must take into consideration the individual’s life stage and keep an eye on the future, including aspirations and life choices.

With MS affecting twice as many women as men, a key example is a patient’s desire to become pregnant and the impact this may have on their treatment choice.[9][10] This decision could mean remaining on one treatment plan for a lifelong condition is less probable.[5] Likewise, there may be some clinical situations, such as severe infections or the need for live vaccinations, where treatment must be stopped for a fully functioning immune system.xi In these scenarios, flexibility in treatment, knowledge of a patient’s options and when they may wish to pause or switch treatment regimen is key to successfully managing their MS.

Innovation in therapeutic advances

People who know me will understand my love for scientific innovation and the way it can be harnessed for better patient outcomes. So naturally I was really interested in the conversation at ECTRIMS around the latest thinking in therapeutic advances.

The scientific programme was packed with study presentations on new advances focused on key endpoints in MS, including relapse rates, stabilisation of brain volume loss and utilisation of the Expanded Disability Status Scale as well as the progress made in diagnostics with fluid biomarkers, and magnetic resonance imaging.[12][13][14][15] All the advances presented, and the initiatives still being developed, fill me with expectant hope for the future of MS care.

Final thoughts

Throughout all of the virtual sessions I attended and conversations I had with the community at the congress, one thing remained at the forefront of my mind - our ambition to ensure a future where we can predict and prevent some of the world’s most devastating and debilitating nervous system disorders, including MS.

Having observed this year’s ECTRIMS congress, I am optimistic that industry, the patient advocacy community, and all other groups and interests in the MS space are on the right path to make this ambition a reality.