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 scientists 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
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 a resource that will be 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 Research Australia [https://msra.org.au/news/anu-toolkit/]. This toolkit describes the study, the model, the involvement of people living with MS in the development of the toolkit, the different ways people living with MS can be involved in research, questions they need to consider, what might be expected of them, what they might reasonably expect in return from researchers, and how they can manage their involvement. The filmed interviews between people living with MS and researchers cover five topics: Consent, Goals, Knowledge, Choice, and Time. They will be a valuable learning resource for both researchers who wish to work in the field of MS and people living with MS who wish to participate in research.
This research study has enabled researchers and people living with MS to have a greater understanding of each other’s perspective. 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. Due to COVID-19, there has been a delay in preparing the study for publication and for launching the toolkit formally. It is hoped that this can happen later in 2021.
Updated: 6 April 2021
Updated: 02 January, 2019
Laboratory research that investigates scientific theories behind the possible causes, disease progression, ways to diagnose and better treat MS.
Research that builds on fundamental scientific research to develop new therapies, medical procedures or diagnostics and advances it closer to the clinic.
Clinical research is the culmination of fundamental and translational research turning those research discoveries into treatments and interventions for people with MS.