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 designed 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.
Updated: 23 January 2019
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.