Huge Advances In EEG Monitoring & Analysis - Mark Cook, University of Melbourne, Australia
Mark Cook and Torie discuss the advancements in epilepsy treatments in epilepsy treatment over the past few decades, thanks to technologies like MRI and genetics. Mark also explores the issue of overreporting and underreporting of seizures by patients and the potential of ambulatory EEG monitoring and big data analysis to provide a more accurate understandings of seizure activity which can lead to both improved treatments and improving peoples’ quality of life.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Mark Cook
“Maybe the things that people are reporting when they think they're having a seizure but we can't see it -maybe there are little seizures but we just can't see them. But often people are saying, I had a big seizure and I blacked out and you can see that they're not. So, we knew this was a hospital problem, but what's become really available in recent times is the ability to be able to record people at home, you know, ambulatory EEG monitoring with video. And that's really been a huge change.”
00:25 Torie Robinson
Fellow homo sapiens! Welcome to, or welcome back to Epilepsy Sparks Insights.
EEGs or electroencephalograms - they come in various forms, but, whichever type we choose; there is a LOT of data collected from them - and there’s a reason that we have specialist neurophysiologists and whole companies in fact, whose purpose is to effectively collect (and try and analyse) all of this Big Data. What looks like an insignificant little squiggle to the untrained eye can be of real significance when it comes to a diagnosis or treatment. And, I can tell you, as a ultra-layperson, when I listen to speakers at epilepsy conferences - one of whom is our marvellous guest today! - my mind is blown away by what is involved and how little I understand!
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Get ready to hear about the over and underreporting of seizures, the advances in ambulatory EEG monitoring, technological innovations in epilepsy management, and how this will help so many people with a refractory epilepsy! All from Australia with neurologist and epilepsy specialist Mark Cook from the University of Melbourne!
01:57 Mark Cook
I can, thanks Torie, and then thanks for having me along tonight! Look, I'm a neurologist and I specialise in epilepsy and I've been working in this area now for about 35 years, really enjoyed every moment of it and I still really enjoy seeing people with seizures and trying to help them through their life, and I enjoy as well doing research and trying to discover new things about epilepsy and ways to help people.
02:22 Torie Robinson
And how much of your time percentage wise would you say is spent as a clinician and how much as a researcher?
02:27 Mark Cook
Well I would say probably I spend about 20% of my time as a clinician.
02:31 Torie Robinson
But that's what gets you into all the cool stuff which we're gonna to be talking about if you've got 80% of your time. So now you've got your finger in heaps of pies!
02:39 Mark Cook
Sorry, I was going to say, you need to be able to be seeing people to know what it is that's important to them. So that part's still really important to me.
02:44 Torie Robinson
No, totally. And do you find, actually, there's a lot that can be achieved by seeing patients and families face to face rather than doing everything remotely? What do you think about that?
02:56 Mark Cook
Yeah, look, I mean, a lot of stuff you can do remotely, a surprisingly large amount…
03:00 Torie Robinson
Mm.
03:01 Mark Cook
… I think. And COVID really was a big education as far as that goes. But it really is important to be able to meet people face to face. And, you know, I always try to meet everyone that I've met before face to face to be able to understand them and their families. And seeing them with the people around them, their partners, their parents, their carers, whatever, is a really, really important way of trying to figure out what's going on and understand what's important to people.
03:30 Torie Robinson
Indeed. And just for our audience, can you confirm: are you a paediatric neurologist or an adult neurologist?
03:37 Mark Cook
Oh, I'm sorry, I'm an adult neurologist. Years ago, I used to see paediatric patients when I worked in a lot of rural spots and they didn't have very good access to paediatric neurologists. So, I would see kids down there, but not for a long time.
03:52 Torie Robinson
And, so, the potential treatment and improvements to quality of life for people with epilepsy have improved considerably over the past 10, 20 years. Would you agree?
04:05 Mark Cook
Oh look, no question. And there's so much happening. So, you know, I remember in my own family, you know, when my dad had epilepsy, there was only like 3 tablets (more or less) and…
04:14 Torie Robinson
Oh my gosh.
04:14 Mark Cook
…there wasn't much you could do with it, and people would shrug their shoulders and, and, you know, people, you know, neurologists and other clinicians didn't like seeing people with epilepsy because they felt helpless that there was nothing they could offer them and there wasn't much they could do. And there are a few brave souls out there doing really radical things around surgery and so on, but they're really rare. And for most of the world, epilepsy was something that people didn't want to deal with, and they were, as I say, a little bit scared of it. So, it's changed so dramatically in the last 20/30 years. I mean, I can't begin to explain it. And I guess a lot of that was MRI - you know, MRI suddenly made epilepsy understandable and the causes of epilepsy understandable. And I think that made a big difference. Once you can see there's something on a scan it turns it into something mysterious and something that you can identify a cause of. And the same with genetics, you know; once people have got a way of understanding the condition has some sort of understandable basis, it alters the way people think about it. Not just the people with epilepsy, but the general community.
05:20 Torie Robinson
Indeed, and actually talking about the general community - that I think actually includes clinicians - they're kind of, I think, more commonly now seeing how exciting - I mean, that sounds bad! - but in terms of research and in terms of, you know, you can actually achieve something with an individual and family now. I see that change, would you agree?
05:44 Mark Cook
I completely agree. I mean, you can do so much now. And there's so much interest and support which never used to exist. So, I think, you know, the whole epilepsy world has gone through such a big revolution over the last 20, 30 years. It's very hard to describe. So, it's really exciting stuff and so much new is happening and it's making a big difference to the life of people with seizures.
06:08 Torie Robinson
And, you know, it's brilliant even for people who experience seizures or even those who have controlled epilepsy, they can see even if a new surgery or new technology might not benefit them directly or benefit anyone they know, it gives us hope for the future. And I think that's kind of rarely seen. It's not just about the individual with the epilepsy that you're helping. It kind of has that ripple effect, you know?
06:32 Mark Cook
No, you're absolutely right. I mean, one thing that has always interested me is, you know, we've always been very involved in trials of drugs and devices. And the bit that really amazes me is how you've got something very new and you don't know if it'll work or maybe it'll even cause people trouble. And people out there with epilepsy and other conditions: they want to be out there being involved and helping other people. And I think, you know, they're so brave going out there and doing all this stuff. If you say to people, you know, you've got a new tablet, you don't know if it'll work, maybe they'll be allergic to it and get some bad reaction or have some other problem and they'll do it! And most people will say to you “If it's going to help someone else, I'll give it a go.”. And I think that's amazing.
07:20 Torie Robinson
I do. And in addition, I always try to give you guys a sort of recognition as well, like people don't really know about the extra work that goes on behind the scenes. I was talking to somebody the other day about the amount of time and money that is spent on conferences and whizzing around the world and, you know, making grant applications and all these different things. So, I think we have people working on all sides to improve the health of people affected by the epilepsies.
07:46 Mark Cook
Yeah, I agree. And people, I think, sort of appreciate that. You know, people with epilepsy can see around them that there's all of this huge community of people all around the world trying to help all the time, doing new things, trying to discover new ways of fixing problems, developing new drugs and other treatments. It's...it’s… I think it's a really great time and so much good is happening that everyone should feel inspired that they will be helped. And if it's not them directly, it'll be other people with epilepsy. You know, everyone is benefiting from the work that's being done at the moment.
08:29 Torie Robinson
We were going to speak, actually, about the… I suppose… it's.. there's nothing good to be said about it(!): the over-reporting and under-reporting of seizures when it comes to a patient or their carer coming to see their clinician. You did a paper recently on this called “How Big Is the Problem? Is it? Yeah, just “Over and reporting seizures. How big is the problem?” So, tell us about that. How big is this problem?
08:56 Mark Cook
So, I've been really interested in this. I mean, normally when we monitor people for seizures, we bring them into hospital and we stop their tablets and we stop them sleeping usually because we're trying to catch seizures happening ‘cause we want to figure out what sort of seizures they are and see if we can figure out which part of the brain they're coming from and all of that. So, we're trying to induce seizures. And we knew from doing it in hospital that there was a problem with people would over-report seizures. So, they would say “Maybe I had a seizure.” and they would log that in their diary. And yet we knew there wasn't a seizure happening. And on the other hand, they would sometimes be having seizures that they didn't know about. And we know that happens a lot because seizures start from parts of the brain which are involved in the machinery of memory. And that part of the machinery stops working temporarily and it's a really strange thing and it's a really startling thing for people with seizures to suddenly realise that they're with people who are telling them that they've just had a seizure and not only do they not remember the seizure but they're sometimes irritated by other people suggesting it and get a bit frustrated and angry and it's a really difficult time. So, we knew these were problems and, you know, we did a study over 10 years ago, where we put devices inside people's heads to record seizure activity continuously and we could see that they're having lots of seizures they didn't know about! And they were also having - and we didn't report that at the time - they were also having lots of events reported that weren't seizures. And, you know, these are really big problems because people with seizures - especially when they're in hospital, obviously - they're trying to help. They understand you're trying to catch their seizures and record them. And so, they're trying to help by saying “Yeah, I think I might've had a seizure - log that down. That's when I had a seizure and have a look at the recording.”. And you'd say, well, you didn't have a seizure then. Now, sometimes seizures are very small. They're just a warning or a feeling and we might not see them on a scalp recording. So…
10:53 Torie Robinson
Uh huh.
10:53 Mark Cook
…maybe the things that people are reporting when they think they're having a seizure but we can't see it - maybe there are little seizures but we just can't see them! But often people are saying, I had a big seizure and I blacked out and you can see that they're not. So, we knew this was a hospital problem. But what's become really available in recent times is the ability to be able to record people at home, you know, ambulatory EEG monitoring with video. And that's really been a huge change. So, you can watch people in their own environment and with their family and friends around them. And you get a really, really deep understanding of what's happening because people are saying they're having seizures and sometimes they're speaking to the people with them and saying “I think I have a seizure.” and the people with them say “Yeah, I think you did too.”. But you can see they didn't have a seizure. You can say that nothing happened…
11:40 Torie Robinson
Huh!
11:41 Mark Cook
…and there's nothing electrically happening. So, it's a really weird thing. And again, I think it's because when you have a condition… I mean, it's like if you have any medical condition; if you have any symptom, you tend to think of it being related to that condition.
11:56 Torie Robinson
Makes sense [how some may think that], right?
11:59 Mark Cook
So, you know, if you've got a, you know, some muscle problem and you get a headache, you think, well, maybe it's my muscle problem that’s causing the headache and so on. So, lots of normal phenomena that everyone experiences, you know, your heart racing or feeling a bit anxious or feeling unexpectedly hot and sweaty or, or thinking, maybe “I felt sick and I can't remember what happened for the last few moments.”. You think, well “Maybe that was a seizure.” - and often it is, but often it isn't! And we can see this, you know, by having these systems now in people's homes and recording them 24 hours a day, can say “Well, look, a lot of things, maybe most things that you're thinking of having seizures are not actually seizures. Maybe a lot of them are little seizures that we can't see, but either way, they're probably not gonna affect your life a lot.”. But on the other hand, we've seen that about ⅔ of seizures that people are actually having, the person having them doesn't know about!
12:53 Torie Robinson
And those type of… those ⅔’s , do they tend to be more focal seizures? Or could they be even tonic or tonic-clonic, or…?
13:01 Mark Cook
They're often, you know, idiopathic generalised seizures, you know, like absences; where people are zoning out very briefly and the people around can see but they can't. But most of them that we see are focal seizures. And the interesting thing is that even people who are with them often don't recognise them. Even family and friends and carers who are very familiar with the seizures, even if they're very close to them physically, don't actually recognise that a seizure’s occurred. So, these are really big problems and they're a big problem because, you know, as a clinician, you know, people come along with their family and carers and tell you what's been happening and you ask them how many seizures they're having, they've got a diary, and you think “Okay, so they're having a lot of seizures.”, so I give them more medication or they're not having any seizures at all so maybe they don't need as much medication, or maybe I don't need to do anything. But in fact, that's often inaccurate. So, people are having a lot more seizures than they know they're having. But on the other hand, they're reporting a lot of the events they report are not actually seizures. They don't have any way of stopping that, you know; everyone's trying to do the right thing. It's not as though they're not out there trying to say “We're having seizures.” deliberately, when they're not. They're out there thinking that the symptoms that they're experiencing are seizures when they might not be. And we as clinicians are depending on that to adjust their treatment and decide whether they're able to drive, or do a dangerous job or whatever. And often we turn to family members and say “Well, have you guys seen anything (in the family)?” and they’ll say “Well, no, we haven't seen anything either!”. And I used to think, you know, that was pretty valuable information and [that] it was pretty reliable, but it turns out it's not as reliable as you'd hope. So, these are big problems. And this trend towards ambulatory monitoring around the world, largely through developments in the technology - so that you can put cameras and recording “things” and the internet electrically transmits the data, and so on. So, you can actually do this realistically in people's homes now - even over very great distances, which you've never been able to do. And I think this is really going to change things.
15:05 Mark Cook
And there are other developments too, you know, because, you know, even with the home monitoring, we're still only talking about days or a week or so of monitoring. And a lot of people are having events less frequently than that. So, you know, there's a new generation of devices that are being developed by a number of groups now putting implants in, under the scalp, you know, because like I said, we put this device in over 10 years ago now inside the head, but that was tricky because it required a big operation. It was difficult to manage and so on. But you can put these newer devices underneath the skin of the scalp and record the EEG 24 hours a day, 7 days a week, 365 days a year and you get this really deep understanding of what's going on with someone's seizures. So, we see in these studies around this sort of work now that they're not reporting events that they're having and they're having a lot of other events that we can see. And on the other hand, as with the amateur monitoring; a lot of the things they're describing are just not seizures. So, it's really, really interesting. And we've seen this in the cardiac world. So, in the cardiac world, you know, 10 years ago or more; they developed devices that could be just put under the skin of the chest and recorded people's heart all the time and a lot of people who said they were having palpitations or other heart problems - which up until then have been pretty mysterious - was suddenly diagnosable because you had something in there all the time and you could say well this is what happened - and we will be doing that with epilepsy soon. So, I think this is the start of a really big change where for the first time we can see what's really happening. And that means you can adjust treatments. You can help people decide when it's safe to do things. You can tell them when it's right for them to go out. You can do all sorts of things. And I've been very interested in seizure prediction in the past. And you need these sorts of devices to be able to predict people's seizures. But all these things are possible with the technology that we have now. And so, we're right on the edge of all this! So, a lot of people work in this area, and lots of things are happening.
17:03 Torie Robinson
MedTech is a great industry in which to be, I think, at the moment, isn't it? You get to see things from all different perspectives. And as people often think it's all, just, like, terrible, and it's all about money, but - and don't get me wrong, there will be people like that - but the people that I've met at the various conferences (where we met), and everything online, they actually want to know what it's like to be a person affected by an epilepsy (or a family member) so that they can produce the best product or service possible, right?
17:34 Mark Cook
I think that's absolutely right. And people say that, you know, it's all about money. There has to be money involved at some point because someone's got to actually make all this stuff happen. But, you know, in my experience, everyone in this area, whatever their interest is, that they're motivated primarily with trying to make people better. And that's what drives it along. Along the way, you need to pick up people who can actually make it work financially. But someone's gotta be driving it who's got an interest in making things work for people with epilepsy.
18:04 Torie Robinson
And just going back to the whole finance side (just quickly), I find that lots of people, especially in certain countries like Australia, like the UK “Oh, money's involved? We pay our taxes!”. And it's like “Well, unfortunately, darling, like, these things have to be paid for.”. So, it does have to come from somewhere, right?
18:24 Mark Cook
That's right, it does have to be paid for and it's got to be worth something to someone. Now, that might be the person or it might be a company or it might be the government or it might be society as a whole, but somewhere along the line someone's got to be prepared to support it financially. I mean, there's nothing else that we do in the world pretty much that isn't supported at some point (financially) by someone; and whether it's medications or whether it's social support services, everything's supported at some point and it's got to be worthwhile and we have to prove that. So, I think that's the job for a lot of researchers. We've got a lot of interesting ideas about this and that; that doesn't mean that it's going to: 1. Help anyone or 2. Be valuable. And it must be valuable in some sense. And like I say, that's not necessarily an evil thing! You know, everyone sort-of talks about it as though, you know, it's companies making money, and it might be a government, it might be a hospital system, a health service, whatever, someone's got to be able to get a benefit from it, and if they can't, that probably means us not really helping anyone.
19:32 Torie Robinson
That's logical. And I also want to mention to you, or bring up with you, when you said “”We have all these like sub-scalp EEG devices which are taking us places”, which of course is true, but sometimes we find out that a person is not necessarily having seizures when they think they are. Do you sometimes find out they're having non-epileptic seizures? And if so, or they have, like, extreme anxiety [that’s] perhaps causing them the feeling… What happens when a person is in that situation? Do you redirect them to, like, a psychiatrist? What happens?
20:06 Mark Cook
Well, I think that's a really good question, you know, I mean, interestingly, in a study we've done recently with a sub-scalp thing, we found that some patients were having events which turned out to be actually cardiac in origin!
20:17 Torie Robinson
Whoah!
20:17 Mark Cook
And so, they were able to get an appropriate treatment by cardiologists with pacemakers and so on. We found others who did definitely have an epilepsy before, who turned out to be much better treated than they thought they were! And here's the surprise; so, you know, we always think of this stuff, you're not going to show people having a lot more seizures than they think they are, but actually a lot of having a lot less seizures than they think they are as well. So, some of the patients came off treatment, some of the patients returned to driving and it turned out that a lot of the things they thought were seizures were not actually seizures! So, there are 2 sides to this! It's not all, you know, in inverted commas “bad news” where you're saying to people “Hey, look, you know, you're much worse than you thought!”. Often, you're saying “Hey, you know what, you're actually much better than you thought!”. Or, alternatively “Actually, what you're complaining of, they're significant events and they're affecting you, but they're not epileptic seizures and there's a different way of treating them! Whether it be your heart or whether it be an emotional thing, or whether it be something that requires the assistance of counsellors and psychiatrists, you know, these are, these are, these are problems, nothing to be ashamed of. And it's a great outcome because there's a different treatment, there's a different way of getting to an answer, and there's a better way of letting you get on with your life!”
21:32 Torie Robinson
And it's quality of life. And that's the most important thing.
21:36 Mark Cook
You’re absolutely right.
21:37 Torie Robinson
And just one more thing - sorry, you just made me think of this when you were talking! Given that we have these all these devices that enable us to have people do video telemetry, you know, do EEGs from home or wherever. Do you feel that gives us real hope for people living in, like, remote areas? People who, you know, live out in the sticks and it takes them ages to get to a hospital, or they can't drive and public transport's rubbish, so how do they get to the hospital? Maybe these services are really good for them too.
22:04 Mark Cook
And again, you know, the combination of the technology around the recording, the ability to analyse really large volumes of data quickly, and the reach of the internet. So, you know, it's like even people in really remote third world communities now, a lot of them have great internet connectivity. And the difficulty is getting people who have the skills necessary to analyse the data. But, you know, everyone sort of says about Machine Learning stuff and that all the time now, so it's become a bit of a fad, but it is true that these Machine Learning techniques with the sort of data that we collect around EEG, and so on, are really-well suited to automatic analysis, which will let so many more people get the right answers at the time that's relevant to them. And these new technologies (you know, putting implants and so on aside); just being able to put an EEG on someone, collect the data and analyse it quickly - you can't do that in most of the world and that's a huge impediment to the proper treatment of epilepsy. And now, you know, we've seen publications from people like Sandor Beniczky recently (and his collaborators in Scandinavia) who've developed these totally automated techniques for analysing routine EEG and providing a report. Remembering that until now, the skills for doing this were quite rare. But now a machine can do it and with the technology that will let you take maybe a mobile phone, a smartphone with some electrodes out to remote location and transmit the data across the world and get it analysed automatically: we're at that point now. And this is really going to change everything.
23:49 Torie Robinson
It is amazing because as marvellous as we think, or wish, or hope for ourselves to be; we humans make so many mistakes, don't we? And so, to have a machine that can back us up and say “Actually, darling, perhaps, you know, look at this part of things.”. It's like two minds analysing one set of data, right?
24:07 Mark Cook
Absolutely. And that's the thing, you know, humans aren't totally out of the circuit on these things, right? So, you know, what the machines do typically is reduce what was once a huge and unmanageable amount of data like (EEG data) from a very long or very large number of people over a very long period into a manageable piece of information that you can give an accurate answer on. And I think that's the revolution.
24:33 Torie Robinson
Thanks so much to Mark for sharing with us an uplifting, exciting few minutes talking about MedTech developments in EEG data analysis and what this means and can mean for so many people around the world affected by the epilepsies! Check out more about Mark and his work on the website torierobinson.com where you can also access, well, not just the podcast, but the video, and the transcription of this episode). And if you haven’t already, don’t forget to like, comment, and subscribe to the channel, share this podcast with your friends/colleagues/family members, and see you next week!
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Mark Cook is the Sir John Eccles Chair of Medicine and Director of Clinical Neurosciences at St. Vincent’s Hospital, and professor of neurology at the University of Melbourne, Australia.
Mark is a neurologist specialising in the treatment of epilepsy and is recognised internationally for his expertise in epilepsy management - particularly imaging, surgical planning, and seizure prediction.
After completing specialist training in Melbourne, Mark undertook an MD thesis while working as Brain Research Fellow at Queen Square, London. He returned to St. Vincent’s Hospital, Melbourne to continue his interest in management of complex epilepsies. He has worked closely with engineers for most of his career, developing novel therapies for epilepsy. His interests have included experimental models of epilepsy and seizure prediction, and he has led the commercialisation of an implantable seizure detection device currently in clinical trials.
A medical diagnostics start-up, Seer Medical, has recently established offices in the UK and US, and obtained FDA approval. in 2023 he was named an Officer in the General Division of the Order of Australia (AO) for distinguished service to neurological medicine and research through contributions to the treatment of epilepsy.
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