MS has a profound impact on the social roles and wellbeing of all people affected by MS – from people living with MS to their families and carers – often due to the impact it can have on their capacity to work and socialise. The evolving interest in personalised medicine potentially offers people living with MS the ability to fine-tune their care to their individual needs, and to recognise and respond to subtle signs of fluctuation in disease.
It is vital to involve people living with MS in MS research as both the MS Researcher and people with MS reap the benefits. People with MS who have previously been involved in the research process or as co-designers of technologies and interventions to help them manage their health, have advised that they have experienced a greater sense of control and decision-making capacity and derived greater benefits to their health.
However, it is common for people living with MS to feel as though they are entering a foreign land when becoming involved in research. Additionally, researchers can sometimes struggle to translate the scientific jargon to engage people fully and effectively with their research.
To ensure researchers and people living with MS are engaging in the development of research in a meaningful way, several 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. Potential barriers, as with any collaborative research effort, is that researchers and people living with MS may have fundamentally differing perspectives on approaches to outcomes, the purpose of the collaboration, the strength of evidence required and the potential benefits of the research.
Dr Jane Desborough from the Australian National University (ANU) and her team were awarded an MS Research Australia Incubator Grant in 2019 and have developed a toolkit to enhance a collaborative partnership between MS Researchers and people living with MS.
The toolkit forms part of a larger project ANU have developed called Our Health in Our Hands. This multidisciplinary project has initially focused on MS and diabetes and aims to develop new personalised health technologies and solutions.
The toolkit is available here for both people living with MS and researchers, who are keen to collaborate as effectively as possible.