A new toolkit developed by The Australian National University (ANU), with the funding support of an MS Research Australia Incubator Grant, will help researchers and people living with multiple sclerosis (MS) to work together.
The MS Toolkit contains a research participation framework and filmed conversations between researchers and people with MS. The toolkit is designed to assist researchers and people living with MS in knowing how they can best collaborate together in research.
The Toolkit is part of a larger research collaboration between MS Research Australia and an ANU Project focusing on personalised medicine called Our Health in Our Hands. The project involves physicists, engineers, scientists, doctors and sociologists in a cross-discipline approach to understanding diseases.
Professor Christine Phillips (AM), an Associate Dean at the ANU College of Health and Medicine is one of the lead investigators for the project. This year Professor Phillips was awarded a Member of the Order of Australia for her significant service to medical education, migrant and refugee health, and to medicine.
Professor Phillips says she is excited to see the toolkit used to further research into MS.
"The aim of the Toolkit is to support people with MS to participate fully at any level in research - from being on a governance board, to participating, to learning about that research through seminars."
Mark Elisha is one of the people with MS who participated in the research project. He says that the MS Toolkit will mean a lot to himself and others living with MS.
"Being involved in research has been empowering. So often as a person with MS I have felt powerless and ignored. This time my experience and my opinions were sought out, valued and used. I want to help, as much as I can, to progress the research around MS and this was a great avenue for that."
Katrina Chisholm, another person involved with the project and living with MS stressed the profound impact that being directly involved with the research has had in her life.
"This has been the culmination of a very long journey with MS, I had a parent with MS when there was no treatment or diagnostic tools available and little if any research. Now I am working with dedicated researchers who are working towards a cure, new medications and assistive technologies that may assist people living with MS to have a better quality of life."
It is not just the physical symptoms that this project aims to help though.
"Other areas of research include dealing with the mental health issues that can occur and managing some of the ongoing symptoms such as fatigue will be of great benefit. I have found this to be a life changing experience," says Ms Chisholm.
Professor Phillips says that some of the most valuable and memorable resources included in the toolkit are videos aimed at answering the concerns of people with MS who might contribute to this research.
The videos provide insight into the different perspectives that people living with MS and researchers have about aspects of research and MS that are important to them.
"We filmed one-on-one discussions between researchers and people with MS, addressing complicated questions like the nature of success, who owns a person's health data, and the place of science and lived experience in research," says Professor Phillips.
Ms Chisholm says she also loves the videos.
"The videos of the people with MS interacting with the researchers and being very open about their MS journey are great. It's the fact that we are considered to be the "expert" about our MS," she says.
It is this goal of understanding that underpins the purpose of the MS Toolkit.
Dr Julia Morahan, Head of Research at MS Research Australia says that "We are delighted to be funding this important work at ANU. People with MS are at the core of everything we do, and this Toolkit will enhance the interaction between both people with MS and the MS researchers, which is beneficial for everyone".
"We hope that researchers and people with MS will discover new grounds for collaboration, recognising and respecting each other's' contributions," says Professor Phillips.
Mr Elisha and Ms Chisholm both agree that the MS Toolkit will allow for greater collaboration and engaging research.
"I think it is important that people with MS have meaningful input into the way research projects are designed. This will produce more useful projects," says Mr Elisha.
"An MS researcher said to me at an MS Symposium, that he had been researching MS for seven years and this was the first time he had met people with MS. The Toolkit will enable researchers to start their research by interacting with people living with MS. Overall we are optimistic that there may be a cure in the not too distant future," says Ms Chisholm.
If you are living with MS and would like to learn more, or be involved in the project, please contact the research team through the website: http://www.anu.edu.au/research/research-initiatives/our-health-in-our-hands
The MS Toolkit was released today and can be found here.