Patient Community Day: Bridging the Gap Between Science and Experience

Tearing down silos, fostering partnerships, and placing people living with multiple sclerosis and related neurological disorders at the heart of research – these are the aims of the 3rd annual Patient Community Day.

To be held as part of ECTRIMS 2024, in Copenhagen in September, the event will give patients the chance to hear the latest updates from some of the leading minds, as well as advise them on the direction of travel for the year ahead.

ECTRIMS President, Mar Tintoré, said: “Every year, we bring thousands of researchers from around the world together to advance our knowledge of MS and related neurological disorders. But the most important members of our community are the patients themselves.

The Patient Community Day will inform, educate, and engage the real experts – people who are living with these conditions. Our aim is to tear down the siloes between different parts of our community, and facilitate the discussions that place patients at the centre of everything we do.

– Mar Tintoré, ECTRIMS President

Working in partnership

Speaking after last year’s Patient Community Day, Tim Coetzee, Chief Advocacy, Services and Science Officer at the National Multiple Sclerosis Society (NMSS) in the United States, said the event gave researchers a “window into the life experience of people affected by MS”.

“The Patient Community Day is a real indicator of where we are as an MS community today… It is an important leadership signal from ECTRIMS that solving MS is a partnership between the scientists, who are the experts in the research, and patients, who are the experts in living with MS.”

This year’s event will include two panel discussions, with the first looking at everything from remyelination and emerging therapies to lifestyle modifications and symptom management. The second will focus on topics including the McDonald criteria for MS diagnosis and MS nursing, as well as updates on the MS-related disorders neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).

There will also be a networking session, during which patients, healthcare professionals, and researchers will have an opportunity to connect and discuss the future of MS research.

“These conversions are two-way,” Coetzee added. “This isn’t just about researchers talking to the patient community. It’s about listening to people with lived experience of these conditions, and using those learnings to shape research directions and goals.”

Bonnie Higgins, Director of the NMSS, spoke about the society’s Pathways to a Cure initiative at the MSMilan2023 Patient Community Day. “Going out and talking to people living with these conditions and their caregivers about our roadmap means they understand it, and can take ownership of it,” she explained.

The day, she went on, represents an opportunity for people living with MS and related conditions to “empower themselves and become their own advocates”. “You can learn this information, and then go to your neurologist and ask the right questions. That’s probably the most powerful thing,” she said.

Coetzee advised the scientific community to “participate, engage, and support”. “It gives us a shared appreciation of how solving MS, whether that’s relapsing, progressive, or paediatric MS, is a global challenge that needs us all. We all have a role to play, we are all experts from our particular frame of reference – research, clinical, or patient – and all of us have to work together if we are to get to a cure.”

The Patient Community Day will be available online and onsite, in multiple languages, and registration is free. Learn more here.

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Written by Amanda Barrell