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It is vital to directly involve people with MS in the research into MS. People with MS can derive greater benefits including an improved sense of control and decision-making capacity, if they are involved as co-designers of technologies and interventions to help them manage their health.
To ensure that the engagement between researchers and people with MS in the development of research studies is meaningful and productive, a number of conditions must be met. This includes a welcoming team atmosphere, realistic and clear expectations for patient research partners, and a sense of reasonable contribution to the research. A potential barrier, as with any collaborative research effort, is that researchers and persons with MS may have fundamentally differing approaches and perspectives on things such as the strength of evidence required and the potential benefits of the research.
Dr Jane Desborough and her team aim to develop a set of tools for collaborative partnership-based research by researchers and people with MS. The tools will aid the development of a platform for communication about differences in perspectives on the nature, purpose, and values underlying the research. To do this the team will use a specific MS research project underway at the Australian National University to develop and test their tools and additionally, they will aim to develop materials to assist researchers and people with MS to collaborate in other fields of MS research.
Dr Jane Desborough and her team have worked closely with people living with MS and researchers, all of whom were generous with their time and enthusiastic to participate in the project. The team have learned that people living with MS and researchers might have different understandings of each other but that there is great value in bringing them together to enable researchers to better understand the lived experience of people with MS and the impact and importance of their research on the MS community. Most importantly, the team learned that people living with MS are keen to be involved in research and must be at the centre of any research about MS and people living with it. They have identified key obstacles that may limit the ways people living with MS and researchers tend to collaborate and learned that all of these obstacles can be overcome.Â
From this work, Dr Desborough and her team have developed a practical model of collaboration between people living with MS and researchers. They have created both an online and hard copy resource. The online toolkit is available as a free resource. It is hosted on the ANU website https://www.anu.edu.au/research/research-initiatives/our-health-in-our-hands/partnership with a launching pad from MS Australia https://www.msaustralia.org.au/news/anu-toolkit/. This toolkit provides a comprehensive overview of various aspects related to the study, model, and involvement of people living with MS in its development. It outlines different ways in which individuals with MS can actively engage in research, presents important questions for them to consider, discusses potential expectations from their involvement, and suggests how they can effectively manage their participation. Additionally, the toolkit features recorded interviews between people living with MS and researchers, which delve into crucial topics including Time, Risk, Knowledge, Goals, and Consent. These interviews serve as invaluable resources, benefiting both researchers interested in the field of MS and individuals with MS who are keen on participating in research.Â
This research study has enabled researchers and people living with MS to have a greater understanding of each other’s perspectives. People living with MS are generally very keen to have the opportunity to be involved in research and must be the focal point of MS research. The positive outcomes from the study were presented at MS Australia’s Progress in MS Research conference in Hobart in April 2022. Preparations are now underway to have the results of this study published in the near future.
Updated 31 March 2023
$20,196
2019
4 years
Past project
