Making better use of data and technology has been a policy ambition for services across the NHS, and one that received much attention as the NHS celebrated its 70th birthday last week.
Last year, the MS Society asked us to look at the potential that data and technology have to improve care for people affected by multiple sclerosis (MS) – a progressive, neurological condition that can cause a wide range of symptoms.
They requested a particular focus on how routinely collected health care data can better support MS service planning, as well as how patient-facing technology can enable people with MS to better manage their condition.
We found there is considerable room for improvement. Research by the Neurological Alliance in 2015, for example, found that only 20 per cent of clinical commissioning groups had assessed the number of people using neurological services in their area.
We also found there are significant opportunities for people with MS to benefit from digital tools – from providing information and connecting them with others, to helping with symptom tracking or medication management. The report is wide-ranging in the opportunities it sets out. Here, we focus on the role of technology in helping people with MS take control of their care.
The role of digital technology in helping people with MS take control of their care
Online sources of information
The internet plays a particularly important role in supporting people to gather information. Interestingly though, the way people with MS tend to search for information about their condition changes over time. Several studies have found that when people are first diagnosed, they go through a period of ‘frenzied searching’, looking across a wide range of online sources for any information they can find.
Particularly in the beginning, people tend to look for information on the disease, its causes, how it progresses, symptoms and therapy. Later on, people often refine their searching strategies and use online sources for specific reasons – including looking for ongoing clinical studies, scientific research, and gathering information before and after a consultation with a neurologist.
One of the most important findings for anyone creating online content for people with MS is that lots of people are scared or overwhelmed by what they find online. As a result, they stop using the internet for health purposes and start to rely on their neurologist for information.
To help to overcome this, we suggest that the third sector and health care providers should build on existing work to provide online information that is tailored to different stages of the disease – being mindful that patients often find overly negative information frightening and disengaging.
Online patient networks
The internet is being used by people with MS to access online patient networks and social media. Evidence shows peer support networks benefit people with a MS in a number of ways – through emotional support such as providing advice or suggestions for coping with the personal challenges of MS, to practical support such as signposting to local services or offering support with particular tasks.
However, there can be negative consequences from engaging with online patient networks. As with face-to-face groups, some people can find it hard to be exposed to difficult aspects of MS that they haven’t experienced yet. This can make people feel very uncertain about their future.
Some people also find it difficult to make social connections online. This can be challenging as MS is often an isolating illness. These things should be borne in mind by health care providers promoting the benefits of online networks.
For people with MS, digital apps have the potential to play a big role in helping them to self-manage, from coping with their symptoms and reminding them to take their medication to store information and access medical records. We particularly looked at how apps can support symptom management – with a focus on mobility and physical activity, pain, cognition and depression, anxiety and wellbeing.
In general, we found that apps rarely involve health care professionals in their development, and that the vast majority have not been independently evaluated. That said, a few areas are showing promise. For example, an app for home-based cognitive training was recently tested for people with MS. It found people were highly motivated to perform well when using the app, experiencing low levels of stress and were not bored. This suggests apps like this are worth exploring further, although they must be fully evaluated.
Encouraging patients to become engaged with their own health and care is an important ambition for the NHS. The Five Year Forward View acknowledged that people with long-term conditions spend less than 1 per cent of their time with health professionals. The rest of the time, they, their families and their carers manage on their own.
Technology can play a big part in achieving that ambition. But supporting patients to engage with their health and care (and use technology to do so) isn’t straightforward. It isn’t clear why some patients engage with their health and care and others don’t.
There is no clear link between levels of activation and type of illness, symptom severity or demographic and socioeconomic characteristics. That said, when activation has been studied specifically in relation to MS, then low levels of education, low levels of self-efficacy (that is, self-belief in being able to overcome challenges) and depression are all associated with lower levels of activation.
Clinicians need to be aware of a patient’s level of activation, health literacy and understanding when they are producing a care management plan or giving them advice on how to manage their MS. When aiming to unlock the potential of technology, the value of helping patients to gain confidence in managing their health and care should not be underestimated.
Castle-Clarke S (2018) "How technology can help people with MS take control", Nuffield Trust comment. https://www.nuffieldtrust.org.uk/news-item/how-technology-can-help-people-with-ms-take-control