Chris Ewart is the inaugural recipient of the Monash Partners 2025 Consumer Involvement in Research Award. Monash Partners spoke to Chris upon accepting this award.
Can you tell us a bit about yourself and what led you to become involved in health and medical research as a consumer?
I’m 63 and have been having seizures for about half my life.
This is most likely due to a severe bout of measles I had as a young child before the MMR vaccine was widely available. Also, when I was about eight I nearly drowned off the local beach, only saved when somebody in a boat called out to a jogger to rescue me. Then, about a year later I fell out of a tree and fractured my skull. As a parent now I really feel for my poor mother and father.
I had my first full seizure when I was in my late 20’s and have been having multiple seizures since. I’ve attained about 95% control by taking multiple daily medications but have to deal with the side effects that come with it, like drowsiness and mood swings. I’ve tried as much as possible to live a normal life – I’ve worked (in insurance), was married, have two great kids – but living with epilepsy means there’s a burden on both you and on those close to you, and you don’t really get a normal life. I also haven’t had a driver’s license, so my social life has been limited.
I’ve enjoyed travelling and have seen a lot of places and still hope to do some more one day.
Our small family lost my brother and father in 2021 which was a real shock and I took early retirement to act as a carer for my mum with the help of my brother who lives nearby. Mum has limited mobility due to a stroke suffered some time ago. I needed something to fill my time, and saw Monash University was looking for volunteers – that’s how I came to be a consumer within a research team. I feel like I’ve been helped by others during my life because of my epilepsy and so I was glad to have the opportunity to start giving something back.
Aside from that I spend a few days each week at the local Salvos store looking after the books, stacking the shelves and talking to customers and other volunteers. I like reading, movies, going on bike rides, I’m in a theatre group and my son and I are members of the local Glenelg Aussie rules football club.
I love catching up with my kids and grandkids. My son came to see me give a presentation to the Care Committee in 2024 and my daughter came to see me accept the Monash Partners Consumer Award.
Can you tell us about the research you are currently involved in as a consumer, and what your role looks like within those projects?
From the moment I first became involved at Monash University I was amazed at the range of studies into epilepsy. I’m particularly interested in the impact of epilepsy medications, particularly their side effects so I was very happy to be involved in the SERIAS study.
I’m currently involved in a couple of exciting research projects both as a committee member and help with running focus groups.
One is being led by Professor Patrick Kwan and Doctor Emma Foster and involves an AI program that (with people’s consent) will take various pieces of information about them such as age, sex, type of epilepsy, EEG findings (plus other data). This will be used to predict the best anti-seizure medication for them, based on other people’s past experiences with the medications.
In this study I am one of several Persons with Epilepsy (PWEs) from multiple locations who are contributing their time and experience to the project. Everyone brings their own background and point of view to regular Zoom meetings. One of the most exciting aspects of the study is getting to know other people and their experience with epilepsy as they bring their own work and personal knowledge to the project,
The other study is with the Research Coordinator with the Department of Neuroscience, Monash University Alison Conquest and it’s looking into the barriers that prevent people from accessing their optimal therapies for drug-resistant epilepsy. Along with Dr Neha Kaul and another Person with Epilepsy I’m helping to run focus groups talking to people about their decisions around epilepsy treatment. The participants have been incredibly open and willing to share their thoughts, and it’s been fascinating while giving me the chance to learn new skills.
What contributions have you made to consumer and community involvement in research, and what does receiving this award mean to you?
The first project I was involved in as a consumer was SERIAS with Dr Emma Foster and Research Coordinator Alison Conquest, along with several others.
The objective of the SERIAS project was to develop a self-reporting seizure tool. I was able to use my experience in writing and editing documents to suggest several changes to the wording of the instrument to make it more user friendly. I also suggested ideas for the layout of the form which were also taken up.
I’ve not only had the privilege of being involved in the SERIAS project. I’ve now seen the results published overseas with my name included. But more importantly, SERIAS is now being increasingly used by neurologists as a self-reporting seizure tool.
I was also part of a community member focus group discussion led by Dr Lucy Vivash that adapted the Desirability of Outcome Ranking (DOOR) tool to include a Quality-of-Life measure.
I’ve also been involved in the Community and Research Engagement (CaRE) Committee as a community member with epilepsy. The committee is responsible for developing and implementing strategies to engage the community and Monash researchers in community involvement in medical research.
While unexpected, receiving the award from Monash is quite special as it’s something that’s never happened to me before. As I said in answer to a previous question, I see what I’m doing as giving back for all the help I’ve been given throughout my life.
Receiving the award has made me feel very fortunate, as I’m just one of many consumers who are contributing.
Why do you believe strong consumer involvement is so important in shaping meaningful, impactful research?
Consumers bring invaluable first-hand experience and perspectives to research projects. There are times when in the right environment consumer contributions can be used to shape the direction of research.
Also, consumer involvement can be used to increase public interest and understanding of research projects by providing first-hand experience of the area being studied. Research being undertaken can be explained to the public very well if you also have the story of a consumer with first-hand experience.
And while it’s not always the case, consumers can help with providing the right language to help with public understanding of and attitudes towards research.
What kinds of support or collaboration have been most valuable to you in your role as a consumer contributor?
For me, the most valuable support is the knowledge that I’m in a respectful, friendly environment, knowing that whatever I say is listened to and taken seriously. And that everyone is equal. It allows me to relax, think and openly contribute. And I believe I’ve seen this respectful environment working to encourage other persons with epilepsy to contribute as well.
The collaboration has engaged with such a wide variety of persons with epilepsy, spanning different backgrounds and experiences, all who have wanted to contribute. Everyone has a different story, and it’s been such a privilege to meet and talk with so many people and learn about not just their epilepsy, but their life experience as well.
And everyone at Monash I’ve met has treated me so well when I’ve come to Melbourne to visit, or just via Zoom.
Why do you think awards like this matter in recognising and elevating the role of consumers in research?
Consumers make an invaluable contribution towards research by donating their time and experience, and it’s important that this is recognised to encourage others to become involved.
The award recognises people who’re working hard not only due to the subject of their research (in this case epilepsy), but who are often raising a family or caring for another. If they also help others by giving some of their time as volunteers, then it’s great for that to be acknowledged.
The award is one way of showing how Monash puts enormous value on the contributions of consumers. It can give the consumer an understanding of the importance of the project they’ve been working on.
It also provides an opportunity for consumers to have face-to-face contact with researchers and others, instead of the usual Zoom meetings.
What are your hopes or aspirations for your future work in consumer and community involvement in research?
I’d like to keep going with the two current projects I mentioned in answer to an earlier question.
Along with that I hope I can become involved in whatever epilepsy related projects are looking for consumer and community involvement. Particularly if they involve the impact of epilepsy medication and side effects.
I’ll continue in my role as a community member of the Monash CaRE Committee as long as the Committee see a need for me.
I’ve met and got to know some very special Monash people in the time I’ve been involved I and hope that can continue.
Chris receiving the Consumer Award from Mary-Anne Thomas, Victorian Minister for Health at the 2025 Monash Partners Symposium.
