Connecting the community: the importance of coming together during times of uncertainty

I was thrilled to see that the MSIF selected ‘connections’ as the theme for this year’s World Multiple Sclerosis (MS) Day. During these challenging times of the COVID-19 pandemic, where so many lives have been affected, and healthcare systems have been disrupted, I currently see these ‘connections’ being brought to life successfully in every section of the MS community to help support people living with MS and their families.

The rapid response of medical professionals, patient groups, and those living with MS coming together as a community to stay informed, share information, and drive forward research on COVID-19 has been deeply inspiring.

I have seen with pride my former colleagues, practicing neurologists, selflessly helping to care for those with COVID-19, while also facing increased needs to support and stay connected with their existing MS patients, who are rightly concerned about how the pandemic may affect them. I have also seen some of them putting their lives at risk every day, like all health professionals do, in service of their patients. At the same time, many physicians have switched to telemedicine as a key facilitator to connect and care for their patients, or simply to share the latest information and emerging data. And several people in the community have gone beyond even that, donating their time to help others, whether in their neighbourhoods, or their communities of care – or sometimes, organising efforts to get PPE to healthcare professionals.

The connections between ourselves have become more important and more binding than ever during this period of global emergency. They are the surest sign of our common humanity and solidarity in times of need. These connections will enable us to create the tools to fight this pandemic – whether that’s new medicines and vaccines, or additional data sources that inform decisions.

While many of us feel like we are at the crossroads of uncertainty, data collection and sharing has never been so important to help us better understand the impact of this disease. Within weeks of the pandemic, the MS community sparked into action initiating numerous registries and data initiatives, which will provide us with data to evaluate how the MS community is affected by COVID-19. As part of this, academics from across the world are also coming together and joining forces to share research, learnings, and opinions on the novel virus’ impact on those living with MS, and how best to ensure care continues to advance through these challenging times.

Of course, the main focus of the world’s attention has been on finding treatments and vaccines for COVID-19. But these efforts to collect, and openly and transparently share data with the MS community are critical to enable physicians and patients to make the best decisions about care, and to manage their MS through this period.

Research takes time and results won’t happen overnight, but these are important first steps in helping us to fully understand the pandemic’s impact. We are proud of our commitment at Roche to support data registries and share data with the MS community, but we are just one cog in a larger machine. This needs to be truly a collaborative effort between healthcare systems, hospitals and clinics, academic researchers and pharmaceutical companies to gather as much data as we can to reduce reporter bias and get a clearer picture in the absence of randomised, controlled trials. It is critical for us to make sure that people with MS feel comfortable that their current treatment programme and, ultimately, that MS management is informed by high quality, connected and openly available data.

Equally important, patient organisations have been at the forefront of connecting people affected by MS with the latest scientific thinking by translating and sharing clinical research and developments into digestible, reliable, and relevant information for their communities, while also trialling schemes – such as Shift.ms’s Co-vid Companion – to ensure no one is left feeling alone.

So, on this day, let’s remind ourselves of the importance of continuing to stay connected, flexible and mindful that sharing best practice among healthcare professionals plays a major part in helping to further the fight against COVID-19. It is our duty to connect the dots so that clinical decisions can be based on hard data and scientific findings, providing the best care we can for people with MS around the world.

As we look ahead to the coming months, how can we each have a role in staying informed and help to demonstrate the value that data can have in making informed clinical decisions?