Michelle Mitchell, chief executive of the MS Society, on how data and technology can improve the lives of people living with multiple sclerosis
That big data and digital technology is having a significant impact on the NHS, with the potential to transform it fundamentally, is not news. However, sometimes the NHS and the charity sector can slip into talking about innovation as ‘a nice to have,’ rather than a necessity.
In the context of a challenging funding environment and unchanged demand for services, it’s easy for innovation and technological improvements to be seen as low priority. But to stand still and ignore the changes happening around us would be to let people with multiple sclerosis (MS) down.
The MS Society has just completed an extensive review of data and technology in partnership with the Nuffield Trust. The resulting report, Improving Care for People with MS: the Potential of Data and Technology, unveils a series of recommendations that we believe could transform services and commissioning for the more than 100,000 people living with MS in the UK.
Using technology to improve care
Our report found that people with MS often want to take more control of their care, and nearly everyone has the basic digital tools – smartphones, tablets and computers – to do so. We also found evidence that digital tools, like apps, can help people self-manage their MS by supporting physical activity, cognitive training, pain management, depression and stress.
Of course, digital tools are not a magic bullet and they can never be a replacement for caring, knowledgeable professionals. One of the report findings was that digital tools work better when they are part of a broader intervention involving nurses, physiotherapists or other healthcare professionals than when patients are left to simply get to grips with the technology themselves.
There is a wealth of evidence to show that coordination between different categories of healthcare professionals, such as in the shape of a written care plan, can improve patient outcomes. In neurology however, recent figures suggest that only 15% of patients have a written care plan.
Rather than engage in a long struggle to bring neurology up to the level of other conditions in terms of traditional care plans, most of which are paper-based, we at the MS Society see the potential to leap-frog directly to digital care plans, using the power of technology to ensure they fit better with the tools, methods and approaches used to treat people living with MS.
People with MS often rely on a range of professionals for their care and our review strongly supports the 2016 report Making IT Work: Harnessing the Power of Health Information Technology to Improve Care in England, commissioned by Jeremy Hunt and headed by US clinician Robert Wachter. This review recommended that IT providers within healthcare should ensure their systems are able to share information with other systems and interpret that information – to improve data sharing between different parts of the healthcare sector.
People living with MS still face needless variations in care and increasingly restricted access to services, a reality that is, at the moment, largely invisible to commissioners and service planners. Research carried out by the Neurological Alliance in 2015 found that only 20% of CCGs had assessed the number of people using neurological services in their area, while only three STPs were rated as having ‘high’ engagement with neurology.
Our findings show that while a great deal of MS-related data is available to commissioners; it is not being regularly used to develop services. At the MS Society, we think the main factors are a general lack of analytical capacity, as well as the under representation of neurology in NHS outcomes frameworks. Changing the current approach is critical if we are to help prevent crises for people with MS.
Our report sets out how analysing routinely available hospital data to better understand hospital use, particularly emergency, by MS patients can point the way to community services that may prevent admission, such as day centres, home adaptations and homecare, including support with aspects like personal care, food shopping and the taking of medication.
We also see potential in closely linking outcome data to clinical prescribing records. In England there is the possibility to link to the MS Register – which captures a broad range of information, including patient characteristics and daily experiences of MS – to the Blueteq prescribing system, the official system for the recording of prescribed MS drugs in England. This would allow us to collect much richer metadata on the outcomes associated with different treatments, so doctors can target specific treatments at those most likely to benefit from them.
To realise the potential inherent in the data available to us, the third sector must take an active role and work with NHS leaders to tackle challenges at both local and national level, and the MS Society is committed to leading on this. Alongside the main report we have published Accelerating Innovation in MS, an action plan setting out how we will respond to the findings. Steps we plan to take include:
- Establishing an MS technology forum of healthcare professionals, patients and tech companies. We found that existing apps and other tools rarely consider all three perspectives, which significantly harms take-up
- Providing more comprehensive and personal information about existing digital self-management tools. We know that the options available can be overwhelming for patients and it’s not realistic for neurologists or nurses to find time to offer detailed advice
- Exploring how digital coordination can improve the referral procedure and joint working between statutory services and local MS Society groups, which provide advice and emotional support.
- Growing the society’s capacity to analyse data and present this to local and national services.
The MS Society believes that by implementing these recommendations we can help people with MS, and other long-term conditions, stay out of hospital, get the right treatment at the right time and take greater control of their care and lives.
To read the full report, visit www.mssociety.org.uk/ms-and-tech-report