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Improving care for people with MS: the potential of data and technology

Authors: Sophie Castle-Clarke, Natasha Curry, Holly Dorning and Laura Wetherly

What is MS?

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.

This report

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. The report 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. This report does not cover the potential for data and technology in social care, employment or welfare for people with MS. We decided to focus on health care in the first instance as the area where there is the most evidence, but the MS Society will be taking forward work to look at other areas in the future (see our action plan Accelerating Innovation for People Living with MS).

Within health care, this 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. 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. Their views appear in boxes throughout the report. Participants were recruited via the MS Society.

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.

The potential of data and technology

Technology is opening up new opportunities to people with MS to manage their condition and feel supported in doing so. We have evidence (based on a small survey) that most people with MS have a smartphone and are comfortable using the internet to find information about MS or to connect with other patients . The internet and apps are already helping people better understand their MS, prepare for appointments with professionals and take steps to better manage their condition – including through connecting with other people in similar situations.

At the same time, data collected by health care organisations (such as the number of people with MS being admitted to hospital) and via initiatives like the MS Register are becoming easier to collect electronically, share and link together. This presents opportunities to better understand MS patients at a local level, including the symptoms they’re experiencing, the types of services they’re using and how well those services are performing. As a result, local areas could use those data to take informed investment decisions and make sure they’re providing the right level of coordinated support for people affected by MS. At the moment, this information is not being used to its full potential. The data often sits in different organisations and is rarely shared with other care providers. Very few people have a good understanding of the kinds of data that are held by different organisations and, if used together, how they could improve MS services.

This report aims to identify how commissioners, planners and providers of MS care can better exploit the opportunities that data and technology offer to improve the experience and care outcomes of people affected by MS, across four areas:

1. Helping people with MS take more control of their care

2. Accessible and coordinated care

3. Improving access to the right treatments at the right time

4. Using data to better meet patient needs