Measuring and managing Multiple Sclerosis: could digital assessment tools improve our understanding?
The extent to which the world of digital health has changed during the COVID-19 pandemic has been widely recognised. Remote medicine has become part of the new normal for patients and clinicians, introducing innovative care delivery models that are likely to endure even if the pendulum swings back to some degree in a post-COVID age.
With this change has come a fresh focus on the role of smartphones to measure disease progression, rather than just a means of raising alerts and triggers that require immediate clinical intervention.
This growing emphasis on evaluating how a condition affects the individual, and how well that patient is performing or functioning over time, has led to great interest in how remote assessment can enable new evidence-based approaches to treating and managing disease.
Tools such as FLOODLIGHT MS, a smartphone-based digital assessment suite for multiple sclerosis (MS) in development by Roche and Genentech, are attracting attention for the way they can deliver novel measures to help detect if, and how, the different functional domains and symptoms of a disease are evolving.
“From what we see, I think the medical community is ready for these types of approaches,” says Mike Baker, PHC product leader at Roche. “Developers of this kind of tool need to be able to provide evidence that shows that they work and give the medical community some confidence to move forwards.”
Baker says that for assessment tools like FLOODLIGHT MS to be successful, they have to generate actionable data. FLOODLIGHT MS focuses on generating data from active and passive tests to measure functional status in key domains typically impacted by MS, providing insights to clinicians and people with the disease to help them to manage the condition.
The value of rapid diagnosis and proactive management of the disease was emphasised in a 2016 paper, Brain health: time matters in multiple sclerosis. By complementing standardised care models, digital assessment tools can enhance the treatment and management of MS on a continuous basis.
“What we hope is that FLOODLIGHT MS impacts clinical practice in a positive way,” says Baker. “That it empowers people with MS to have better conversations and brings them closer to their care team. It’s not about replacing anything – the six-monthly visits or the interactions they already have. Rather, we hope it can help people make the most of that limited amount of time.”
Baker suggests that people who have MS hold the key to understanding their own data. “If you’re seeing changes in the data, what does that really mean? Only the person with the disease can tell you what it means to them, and that element of context is crucial,” he says.
This is a major reason why Roche and Genentech are working towards a tool which focuses on underlying disease worsening rather than alerts and triggers. With changes in data being so dependent on context, it can be difficult to derive the severity of a condition solely through information gathered via smartphone. In any case, a patient suffering a rapid worsening of symptoms will probably already have a care team around them.
“We want to look at the underlying concept of progression,” says Baker. “The fact that MS progresses independent of relapse makes it important to identify and manage the condition continuously in an appropriate way. We’re trying to offer something that the care team can’t do today – monitoring the steady decline rather than the more obvious acute activity.”
Engagement and collaboration with existing health systems
As far as the adoption of smartphone-based assessment and monitoring goes, the critical aspects are: engagement among patients and clinicians, industry collaboration and embedding digital tools into existing care pathways.
Baker says co-creation of solutions is as important as the science of assessment. “It’s certainly important that you can measure MS, but equally as important is that people with MS are willing to use the tools to generate data, share the data and do it on an ongoing basis,” he says. “It’s something that takes a lot of thought and close partnership with the community.”
Post-COVID, Baker expects the appetite for digital assessment tools in neuroscience and medicine to continue its rapid growth.
“COVID changed everything in terms of access to care,” he says. “Many people with MS don’t want to go to higher risk places such as hospitals unnecessarily. It’s changed the way care is delivered, and I think we’ll see much more access to remote medicine in the future.”
But one developer cannot deliver change on their own. It requires industry-wide collaboration among the medical and pharma community, leading to a standardised approach to digital monitoring.
“If we have better mechanisms to detect changes in people with MS, it improves our ability to develop medicines,” explains Baker. “We can see those changes sooner and in more detail, and that means we can be faster and more efficient in the way we run clinical trials. It’s all about the understanding of MS - and that translates into better care for the patient.”
To learn more, visit the Roche booth at the HIMSS & Health 2.0 European Digital Conference (7-11 September). Click here for further information and to get your ticket. Keep up with the latest news and deveopments from the event here.