- Consumer involvement in health and medical research brings many benefits.
- People with MS spoke about their experiences of direct involvement in research, helping select drugs for clinical trials in MS.
- MS Australia is supporting ongoing consumer involvement in Australian MS research and helping facilitate clinical trials of the shortlisted drugs.
In 2022, the Australian Federal Government called for proposals to treat Epstein-Barr virus (EBV) in MS.
MS Australia brought together people with MS and researchers to select drugs for repurposing and to design the clinical trials.
MS Australia’s Lived Experience Partner, Andrew Potter, says the catch-cry “nothing about us without us” resonates poignantly in contemporary research principles and practice.
Consumer involvement enriches research in many ways. We spoke to people living with MS about their new scientific paper and their experiences of being directly involved in the research process.

Andrew Potter, MS Australia Lived Experience Partner and study co-author
Benefits of consumer involvement in research
Across the world, governments, research bodies and health organisations are recognising the inherent benefits of consumer involvement in research.
Consumer involvement increases the relevance of research to health needs, improves the quality and impact of research on health outcomes and strengthens the translation of discoveries into policy and practice. It builds public confidence in health and medical research and improves opportunities for research funding.
Involving MS consumers in health and medical research
“As primary stakeholders, consumers have an inherent right to be involved in health and medical research and should be encouraged, supported and given opportunities to do so” (Involving consumers in Medical Research, WAHTN 2021).
MS Australia is committed to involving the voice of people living with MS in advocacy and research, as outlined in our 2023 RoadMap for Consumer Involvement.
Our Lived Experience Expert Panel (LEEP; and formerly, our MS National Advocates) is our voice at the table in designing, implementing, and translating health and medical research in MS.

Erin Brady, MS Australia LEEP Member and study co-author
Why did people with MS get involved?
Lynne Smith, former MS Australia National Advocate, said she was primarily motivated to contribute to research by her desire to advance treatment for people living with MS, as well as finding the research interesting.
Former MS Australia National Advocate, now LEEP member, Erin Brady, held a specific interest in this project: “Since the US Military research was released indicating the prevalence of EBV in MS, excitement has abounded in the MS community with the thought that ‘If we get rid of EBV, can we get rid of MS?’ While a considerable amount of research and work needs to be conducted for this even to be considered a possibility, I like to believe ‘in the art of the possible'”.

Lynne Smith, former MS Australia National Advocate and study co-author
How did people with MS find the experience of being involved?
Lynne reflected on collaborating with scientific and medical researchers: “As someone without a medical background, I was initially a little intimidated by the big brains working on the project. But in the end, contributing, listening to and learning from the other collaborators was a really positive experience”.
Regarding the process of drug selection, Erin added, “As the people who would one day possibly take (the candidate drugs), it was great to have a say in the choices proposed”.
Perspectives on consumer involvement for the future
For people with MS, Erin says, “We can and should be at the forefront of MS research. It’s incredibly important to be involved. It can only provide better outcomes for us all”.
Increasingly, research funders, including MS Australia, are mandating consumer involvement in research as a condition of funding.
We applaud the inclusion of people living with MS as authors on the first scientific paper from the EBV collaboration, acknowledging the importance of their contribution.
MS Australia and organisations around the world are continuing to work on the best ways to involve the consumer voice in research.
Erin highlighted the importance of involving consumers as early as possible: “There are always time constraints with grant proposals, but having people with MS involved from the very beginning is ideal”.
“Great ideas may come from the very people affected by this debilitating disease, as opposed to researchers having the idea and then asking people with MS. Let’s have people with MS at the ideas table,” she added.
Follow the links for more on MS Australia’s LEEP and RoadMap for Consumer Involvement.