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Reflections on ECTRIMS: elevating the patient empowerment agenda

Reflections on ECTRIMS: elevating the patient empowerment agenda

Attending last week’s 37th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) was an invaluable experience for me, deepening both my understanding of the disease and my connections with the wider MS community. It was my first time attending the virtual event. As the world’s largest annual international congress for MS, it hosts thousands of attendees around the world, all united by the common goal of effecting positive change for patients.

Held over three days, ECTRIMS provided a vital platform to discuss the latest research and hot topics in MS. These ranged from current thinking on monitoring disease progression, to treatment of the condition in relation to COVID-19. There was an understandable buzz as the first sessions kicked off on opening day; of particular note was a session that covered emerging research exploring the relationship between brain volume, disability, cognition, and motor function.  

I was particularly proud of my Janssen colleagues who presented a poster outlining the importance of patient empowerment in treatment decision-making for MS.1 We are now in the second year of virtual congresses and collaboration online across different time zones is still the default for many of us. Yet despite that, I have never felt closer to my team. We are united by the shared goal of elevating this vital agenda. It sits at the heart of Janssen’s neuroscience strategy, and we have all been looking forward to sharing this new research with the wider MS community.

It arrives at a particularly crucial time. Thanks to great advances over the last 10 years, physicians and patients now have access to a wide variety of treatments, which differ in their efficacy, routes of administration and side effects. Given the complexity of the current treatment landscape, it is more important than ever that patients feel empowered to discuss their individualised treatment regime with their clinical team. This has the potential to improve patient satisfaction and outcomes.

At Janssen, we are wholeheartedly committed to supporting patient empowerment. While we are leading cutting-edge research and development into the disease, we are also acutely aware that in isolation that is not enough. We cannot exclusively view MS, nor any neurological condition, through the lens of science alone. We need to better understand the patient perspective, especially with a disease like MS where patients suffer from visible and invisible symptoms like pain and fatigue.

That's why we adopt a multifaceted approach to treating MS; recognising that patients’ lived experience and insight into their own condition has incredible value.

Our patient empowerment research poster presented at ECTRIMS is based on a cross-sectional survey of MS patients in both the EU and the USA. Just over one in three (35%) of the 975 patients who responded reported that they were actively driving treatment decisions. Almost two in three (62%) patients would discuss a change of treatment if they did not think it was right for them.1 This surely stands evidence to the positive strides the collective MS community is making in empowering patients to talk about treatment.

However, the study also found that compared with respondents in the EU, US-based respondents were more likely to take an active role in shaping their care.1 This important finding highlights that, while there has been good progress in Europe to support patient empowerment, more can and must be done.

Janssen is committed to effecting meaningful change in this space through initiatives such as our co-created mobile app, ExpressMS, which I wrote about in June following World Multiple Sclerosis Day.

Through collaboration with patient advocacy groups and the wider MS community, we collectively designed a practical tool which helps patients to have open conversations with their family, friends, and healthcare professionals.

Empowering patients to confidently discuss their symptoms is essential to improving outcomes in so many conditions. It is particularly important in those conditions which cause invisible symptoms (those not visible to others) such as brain fog, pain and fatigue.

Invisible symptoms can have a devastating impact on the lives of people living with MS, although their burden is often under-appreciated and under-supported.2,3 Similarly, such symptoms are often overlooked in mood disorders – a space I have worked extensively in with my colleagues at Janssen over the last decade.

We are committed to changing this. Transforming the way people think of, and treat, nervous system disorders is an ambitious goal, but one which we at Janssen have been driving real progress on for more than 60 years. I look forward to continuing to lead our work in EMEA and build our legacy in MS. The innovation, passion and collaborative working that are so apparent in our MS community, particularly at events like ECTRIMS, leave me confident that we can collectively reduce the burden and disability caused by this disease.


1. Cole M, et al. Empowerment of multiple sclerosis patients in treatment decision making. Presented at 37th Congress of the European Committee for Treatment and Research in Multiple Sclerosis, 2021

2. Multiple Sclerosis Trust. Thinking and memory problems. Available at: Last accessed: October 2021.

3. Janssen Data on File. RF-139281.