Multiple sclerosis (MS) is a progressive, neurological condition. Most people first experience symptoms between the ages of 20 and 40, which means they have to manage the condition for much of their adult life. It’s a complex condition for patients and their carers to manage, from remembering to take medication at the right time to tracking symptoms and identifying relapse triggers.
There is also the psychological impact of MS, from coming to terms with the diagnosis to the long term impact on how they live their life. People with MS will often need to see lots of different health care professionals, including neurologists, urologists and mental health and community teams.
Recognising the potential of technology and data to transform the care and experience of people with MS, the MS Society commissioned this report from the Nuffield Trust. It maps out what is already available, what more could be done with what is available and how data and technology could be better exploited in future to improve MS health care.
The report examines four key areas in the lives and care of people with MS where the potential of data and technology could be harnessed to make a significant difference:
- Helping people with MS take more control of their care
- Accessible and coordinated care
- Improving access to the right treatments at the right time
- Using data to better meet patient needs
Much of the report draws on published evidence. We also spoke to eight people with MS about their experience of using technology and seven people with MS about their views on sharing their health data. Our review of the data landscape draws on our own desk-based research as well as interviews with data experts across the UK nations. Finally, we held two roundtables: one with MS data and commissioning experts and the other with MS and technology experts. We used these sessions to test our findings and to develop recommendations for central bodies, health care providers, commissioners, the third sector and technology companies.
Our recommendations appear throughout the report.
Castle-Clarke S, Curry N, Dorning H and Wetherly L (2018) Improving care for people with MS: the potential of data and technology. MS Society. Report www.nuffieldtrust.org.uk/research/improving-care-for-people-with-ms-the-potential-of-data-and-technology