How could digital tools be used to support MS services?

We rely on digital tools every single day – from shopping to keeping in touch with friends and family. But how could digital tools be used to support MS services?

What are digital health interventions?

Digital health interventions use technology to improve healthcare. They're already being used across medicine, from making appointments to giving people ways to monitor their health.

What symptoms are you focusing on?

A lot of my work has been on fatigue and MS, so that was our starting point. We know quite a lot about what can be effective for fatigue. But a survey showed that fewer than 10% of people with MS in the UK were being offered these treatments. This is why we set up the Refuel-MS trial to test whether a tailored digital treatment can help reduce MS fatigue.

But there are a lot of other symptoms that people with MS might need to manage. So there's a risk that we could end up with hundreds of products on the market for different symptoms. PhD students in our MS Society Doctoral Training Centre (DTC) are working to create and test a single app with our industry partner, Avegen. This will offer different treatments for different MS symptoms, with a current focus on pain, sexual difficulties and psychological distress.

The longer-term idea is that these will join Refuel-MS in a single app called Navigate MS. So people can focus on the symptoms that are most important to them using just one app.

How have people with MS shaped your work?

We work closely with our patient advisory group. This includes people with MS from different backgrounds, genders, ages, and with different types of MS. They help us identify any barriers or issues with the products we're creating and suggest ways to overcome them.

For example, we've learned that although many people have a smartphone, they might find it difficult to use our apps on it. But this can be solved by lending out larger devices like tablets for people to use.

How could these digital treatments fit in with other support available?

They could create what we think of as a 'stepped care' model. For some people, this might look like an app they can download and work through on their own. And that might be all they need. Whereas people who need more support can work through the app alongside a healthcare professional.

We're not suggesting these digital interventions should replace healthcare professionals. But we need to think pragmatically about how we use the resources we have available in the best way possible.

How could people with MS access tools like these?

At the moment, getting these tools into the clinic is very complex. They need to go through a strict process to make sure they're safe and effective, like a drug would. As a team, we've learned a lot about the process and how to navigate it – something we certainly didn't know when we started! It can be costly, both financially and in terms of time.

People often try to get around this by marketing their tools as 'wellness' products instead. This can be cheaper, but it means they might not necessarily be evidence-based. We'd rather go through the official processes to make sure our interventions are both safe and effective, even if it takes more time and money.

Another way these tools could be rolled out is through MS organisations. At the moment, we're working with the MS Society to promote a digital app called Orbi through the MS Help Hub and local groups. This is based on research we ran looking at managing distress for people with chronic health conditions, including MS.

What are the next steps for your research?

The PhD students working as part of the DTC are quite early in the process and are currently building their interventions. For Refuel-MS, the trial is ongoing, and we're gathering data to understand if it's an effective tool. We should have the results ready to share next year.

As part of that project, we're looking at how it could be implemented in an NHS trust. And what the uptake and cost are like. If the trial shows Refuel-MS is effective, it will help us put together a case for how it could be offered on the NHS.

This blog came from an article in our MS Matters magazine. You can explore the full back catalogue of the magazine.