How does gathering data improve the lives of people with MS?

In this video Aoife interviews Helmut Butzkueven who is a Associate Professor. The interview was filmed by Millar

Video transcript

Aoife, MS Reporter: And in the policy report, ‘Brain Health, Time Matters in Multiple Sclerosis’, you highlight the importance of standardising data collection both nationally and Internationally. Could you explain what data should be collected and how this could ultimately benefit people with MS?

Helmut Butzkueven, Associate Professor: Look, it was a famous British person, Lord Kelvin, who said that if you don’t measure it, you can’t improve it. So if we, in order to measure things – and we don’t need to measure a lot – we need to actually write it down in a standardised fashion. Databases do that. We have lots of fantastic tools in the world that can make that data collection fun and simple and short.
Aoife, What is it?
Well, everybody has some demographics of course, you know, age, date of diagnosis and those kind of things, but beyond that what do we want on an ongoing basis? We want to know to know when people’s treatment started and ended. We want to understand the timing of relapses and how they were treated, and we want to have an evaluation of the neurological signs and symptoms. Many people in the world use something called the EDSS score, it doesn’t have to be that, but it has to be some score, it could actually come from people with MS because there are patient derived EDSS scores as well. So it doesn’t really matter so much exactly what it is, but it has to be standardised.
So any time if I, I mean I’m a neurologist, and if I see a person with MS I can say, look, based on my database which I can see before me, you’ve had MS for 15 years, you’ve been on seven different drugs, this is when they started, this is when they ended, you’ve had 18 relapses, this is where you are now. That information is vitally important for me to understand what to do next.

Aoife, And can I ask, in addition to the EDSS score, can you see something like baseline cognition evaluations, you know, be used in conjunction with this too, to better measure cognition?

Helmut Butzkueven, Associate Professor Absolutely. Not just about cognition. There’s a whole world of self-monitoring apps. That world is about to be significantly enriched specifically for MS with a variety of new projects. They measure cognition in a very simple way. Actually they measure things like reaction time or fatigability over a minute or two, on a kind of game-like test. But we know that those tests are highly significant and that if they change, they actually mean something, they mean potentially a worsening of the condition that should alert a medical review. These apps also extend to, for example, apps that measure walking or that measure upper limb function, so it’s not just cognition. But I’m deeply interested, and I think the world is deeply interested, in changing the whole conversation around managing MS. You know, you don’t want just ten minutes once a year or every six months with your neurologist. We think that we can implement self-monitoring tools which effectively provide information about your disease, if you want on a daily basis, on a weekly basis, on a monthly basis. That can then be shared with your care team to help decision making.

Aoife, And I suppose that puts the person with MS back in the driving seat too?

Helmut Butzkueven, Associate Professor, That’s the whole point.

Aoife, Yeah. So it’s just about empowerment and effective communication.

Helmut Butzkueven, Associate Professor, Yeah, it is absolutely about both of those things. But it’s also about, self-management is also actually about understanding your own disease better. And also understanding if you’re changing or not, better. So it is about empowerment, it’s about communication, but it’s also about measuring.

Read Brain health: time matters in multiple sclerosis

MS Reporter: Aoife
Expert: Helmut Butzkueven, Associate Professor

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