How Tasmania’s MS Research Flagship is putting lived experience first
At the MS Research Flagship, based at the Menzies Institute for Medical Research in Tasmania, Australia, people living with multiple sclerosis (MS) are helping shape the future of research. This isn’t just about participating in studies, it’s about being part of the decision-making process.
This approach, known as consumer and community involvement (CCI) in Australia (patient and public involvement—PPI—in the UK/EU), ensures that research is shaped by those who know MS best—people living with MS, their carers, and supporters. This in turn makes the research more relevant, inclusive, and impactful.
What is CCI and why does it matter?
CCI means people affected by MS work with researchers rather than the research just being about them. They help guide research priorities, review study materials and grant applications and help with communicating results back to the MS community. Their insights help researchers better understand the everyday challenges of MS and ensure that studies focus on what truly matters—whether that’s managing symptoms, improving daily life, or exploring new treatments.
A model of collaboration
The Flagship’s Consumer and Community Reference Committee (C&CRC) plays a central role in this work. Made up of people with MS, carers and allied health professionals, the committee help researchers communicate clearly and design studies with real-world needs in mind.
“As a consumer group we can influence the direction of research, making sure that it is relevant to our concerns and hopes for the future. It means we can help researchers understand what our lives are like, and how we live every day.”
Meg Denham, person living with MS and former C&CRC member
Since its formation in 2019, the committee has helped double the Flagship’s research funding success—proof that community involvement leads to stronger, more competitive research.
Making research more accessible
One of the committee’s key roles is reviewing study materials to ensure they’re easy to understand. Scientific language can be a barrier, so the committee reviews information sheets and recruitment materials to make sure they’re in plain language. This makes it easier for people to make informed decisions about participating in research.
A global vision, grounded in community
Although the MS Research Flagship is based in Tasmania, its work connects with global efforts to improve life with MS. The Flagship collaborates with MS Australia, the MS International Federation and research institutes around the world.
This commitment to CCI is also central to the new MS Centre of Research Excellence (CRE), a $3 million initiative funded by the Australian Government National Health and Medical Research Council. Led by the Flagship team at Menzies, the CRE aims to make MS a disease without disability by accelerating research that is shaped by the priorities of people living with MS. It brings together researchers, clinicians, and MS community members to co-design solutions that improve care, treatment, and quality of life.
By putting people with MS at the heart of research, the Flagship —and now the CRE— is helping to build a future where science is not only rigorous but also compassionate and community-driven.
🔗 Learn more about CCI at the MS Research Flagship
🎥 Watch the video below
Blog courtesy of MS Research Flagship, a Patient Community Day Supporting Partner.