Involving consumers and community

The MS Research Flagship has a well-established and dedicated consumer and community reference committee (C&CRC) ensuring that consumer and community involvement (CCI) is at the heart of our program.

The committee partners with the scientific advisory committee and steering committee — both with consumer representation — to provide the governance structure for the Flagship. Importantly, members of the C&CRC provide ‘lived experience’ expertise to the various research projects of the Flagship.

Since 2019 the C&CRC completed more than 1,000 hours of work across 17 different MS projects and 16 governances. Their involvement has provided the lived experience perspectives that have improved research ideas and provided clarity on why the research is important to the community. They have helped make the research more accessible through use of language that is easy to understand, positive and empowering. The have helped shape the direction of research projects and provided researchers with new ideas and inspired our researchers to continue working towards a future without MS.

From 2019 to 2022 the average grant success rate of the MS Research Flagship increased from 29% to 67%. In 2023 and 2024, this has remained steady at around 50%, demonstrating the Flagship's governance and CCI model has significantly improved MS research.