The MS Society has moved on to the second stage of its digital transformation programme with a series of proposals to improve health outcomes for people living with MS.
The charity has published a report that outlines a programme of data and technology-driven changes it believes could transform the way MS is treated and managed.
The publication of Improving Care for People with MS: the potential of data and technology comes after the launch of the charity’s new website in May as the organisation seeks to improve the lives of those with MS in the face of what it describes as an "unacceptably slow" pace of change in health and care services.
The charity sees overhauling services through data and tech as its next phase of digital transformation
The report, written in conjunction with healthcare and technology specialists, says that digital transformation and the possibilities it provides have not yet been realised within the care and support that people with MS access. It argues that there is a long way to go before the NHS and the third sector are fully using technology to deliver personalised and coordinated services that best meet the needs of the MS community.
The report identified four areas that would benefit from improved data and technologies: helping people to take more control of their lives, accessible and coordinated care, improving access to the right treatments at the right time, and using data to better meet patient needs.
The MS Society’s vision of the future is one in which technology, such as open APIs, shared digital care records and wearables, will allow for more data to be captured and shared with less effort for better rewards in terms of accuracy and consistency. It sees apps and online platforms as the tools to help empower people with MS while also looking at the potential of artificial intelligence.
"At our most ambitious, we can see emerging technologies such as AI, machine learning and remote monitoring of condition markers opening up more tailored and personalised care, from services to treatments," the report says.
The report’s recommendations include: evaluating existing MS digital tools, such as apps, to increase effectiveness; using digital care plans to improve coordination between professionals; linking prescribing data to information about outcomes to help people with MS make better decisions on their treatment; and ensuring all MS-specific technologies are robustly tested with the MS population, with the MS Society acting as a conduit between patients, professionals and technology companies.
"The potential of data and digital technology to improve outcomes in MS is so vast that what’s being used today barely begins to scratch the surface," said Michelle Mitchell, chief executive of the MS Society.
"Sadly, this means the 100,000 people with MS in the UK are still facing needless variations in care and increasingly restricted access to services.
"We hope this report will be a catalyst for change, so we can finally have personalised, coordinated services that meet the complex needs of people living with MS. The third sector has its part to play too, and we’re looking at ways to improve our own digital offering and leading by example. Together, we’re strong enough to stop MS."