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Better use of data could improve health outcomes in multiple sclerosis, leading experts claim

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Michelle Mitchell, Chief Executive at the MS Society

A review of multiple sclerosis (MS) services in the UK suggests data and technology could improve health outcomes for more than 100,000 people living with the condition.

‘Improving care for people with MS: the potential of data and technology’ unveils a series of proposals from healthcare, industry, and technology specialists, which they believe could transform MS services and commissioning.

The MS Society, which developed the report, says failing to better use data and technology will mean longer waiting times, difficulties monitoring treatments, and increasingly squeezed budgets.

Consultant Neurologist Dr David Rog, from Salford Royal NHS Foundation Trust, said: “MS services in the UK vary considerably and, despite the best efforts of dedicated teams, are under increasing pressure. Effective use of data and technology can change that, for example by empowering people with MS to self-manage. As a Global Digital Exemplar, our Trust has been on a real digital journey, and can now not only identify the thousands of people with MS under our care, the treatments they’re taking and how they use the service, but also the people who haven’t been seen, and how we’re performing.

“MS is a painful, unpredictable condition, and if simple changes can so obviously improve efficiency and sustainability, we can’t afford to ignore them – and nor can our patients.”

The report was developed in response to what the charity describes as an unacceptably slow pace of change in health and care services for people with MS, and the recognition that something must urgently be done to support self-management and address increasing NHS staff workloads.

Michelle Mitchell, Chief Executive at the MS Society, said: “The potential of data and digital technology to improve outcomes in MS is so vast, what’s being used today barely begins to scratch the surface. Sadly, this means 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.”

The recommendations include:

  • Encourage all CCGs to assess use of local neurological services , to increase visibility of people with MS and ultimately improve service design and availability
  • Evaluate existing MS digital tools (e.g. apps) to increase effectiveness and enable recommendations from people with MS or health professionals
  • Use digital care plans to improve coordination between professionals so they can analyse and share medical data and histories more easily
  • Link prescribing data to information about outcomes to help people with MS make better decisions about treatment, and target unwarranted variation in access
  • Help people with MS understand how their data will be used to encourage data-sharing
  • Bring the international MS community together to agree outcomes measures for MS, and focus on the things that truly matter to those living with the condition
  • Ensure 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 MS Society believes that through implementing these new recommendations, healthcare professionals and commissioners can help people with MS stay out of hospital, and empower them to take greater control over their lives. The charity is also in the process of establishing an ‘MS Technology Forum’, designed to bring together people with MS, tech developers, healthcare professionals and researchers to deepen our understanding of what technologies would best help people with MS self-manage.

Jane is in her sixties and has secondary progressive MS. She said: “Technology has had a profound impact on how I manage my MS. A few years ago I lost the ability to use my hands, but I’ve been able to keep my independence because of access to new technology – I can operate my computer by voice control, and have another system that lets me answer the phone and lock the door. Being able to participate in society – whether that’s speaking to friends, accessing news, or doing your own shopping – should be a basic right, but sadly I fear I’m in the minority.

“If you can get a drone to deliver a kindle, it doesn’t make sense that MS services still feel in the dark ages for so many people. Technology can help you better manage your condition and vastly improve your mood, so I hope others don’t have to wait much longer to have the benefits I’ve had.”