Making Lives Better From Home - Epilepsy - Graeme Jackson, The Florey Institute of Neuroscience and Mental Health, Australian Epilepsy Project
Just One MRI Scan Required For Epilepsy?! The Australian Epilepsy Project aims to transform the traditional diagnoses and treatment approach by integrating advanced MRI, AI technology, data analysis, and telehealth to provide super-personalised care and improve both patient outcomes, and quality of life! Epileptologist Prof. Graeme Jackson tells us all about the cool project; emphasising the importance of addressing mental health alongside seizure control, and his aspirations for the project’s global impact! Transcription and links to Graeme below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Graeme Jackson
“We looked in the early 90s and from the time you had your first seizure until the time that you had your surgery to fix you was an average of 22 years.”
00:12 Torie Robinson
Imagine if somebody with an epilepsy and the mental health issues (which are often part of it) only needed to go to the hospital once (for an MRI) and that is it. Imagine if all of the information from that MRI was all that was needed for the doctors to know: exactly what specific type of epilepsy the person had, what medication they needed or what medication they shouldn’t have, and what treatments would be beneficial their mental health, and then, also, if they needed surgery; they wouldn’t have to wait the average of 22 years (!!!!!) to be referred to a neurosurgeon!
Well, to hear more about the project promising us this, let’s meet epileptologist, prof. Graeme Jackson from Melbourne!
If you’re new and you haven’t done so already, please do like and comment on this episode, subscribe to our channel, so as to get more people learning about the epilepsies!
00:56 Graeme Jackson
Hi Torie, it's great to be talking to you. Yeah, my name is Graeme Jackson. I'm a neurologist in Melbourne, Australia, and I specialise in epilepsy. I'm also a researcher; I spend a large amount of my time in research and I'm the clinical director of the Florey Institute of Neuroscience and Mental Health, which is one of the biggest neuroscience research medical research institutes in the southern hemisphere. So, I have the... fortune of combining research with clinical practice and treatment of patients with epilepsy.
01:31 Torie Robinson
So, tell us about your AEP Australian Epilepsy Project.
01:34 Graeme Jackson
So Torie I'm a pretty lucky, lucky researcher in many ways; I've spent my whole life trying to marry high technology and new technology with problems in epilepsy. I've recruited, I've worked a lot with physicists and I've done a lot with MRI, you know, from my various backgrounds. And I always thought MRI was the way to see what's going on in a patient's brain with epilepsy. So, I spent a lifetime doing that and then there was an opportunity through a thing called the Medical Research Future Fund in Australia to have what's called “moonshots” to really make a difference both in health and wealth. And so, I was fortunate to put a bid to say we can change the lives of people with epilepsy and this is a worthwhile goal and I was lucky to be given a 30 million dollar grant to see if I could make that happen and I'm 4 years into doing it all.
02:29 Torie Robinson
So, Graeme and I were having a natter beforehand - and we could have gone on forever - and it turns out that your work in MRI has positive effect affected even myself here on the other side of the world. That's amazing.
02:41 Graeme Jackson
Well, you know, I started with, working with a really good researcher who had just come back from Montreal Neurological Institute. I'd just done a bit of radiology before I decided I was really a neurologist. So, I did a year there and I worked out some criteria to use MRI scan to see that we could see whether there was damage to a structure deep in the brain called the hippocampus. Because hippocampal sclerosis, once it develops, becomes very highly epileptogenic, and removing it is one of the best operations to give people a life with: either much better seizure control or no seizures. And yeah, you're one of them. So, you know, I feel highly connected to you.
03:27 Torie Robinson
No, totally! I've often said I would probably be dead if I hadn't had that surgery. So, I'm here and that's largely because of yourself. So, thank you. Thank you, Graham. So, tell us, gosh, it's getting all emotional now(!). Tell us about the AEP then. Oh, you say you're 4 years in. How long is the project for?
03:47 Graeme Jackson
The project’s just seed funding, it’s a set up. What we've set up with this project is the idea of how to change lives of patients with epilepsy. So we're looking at people from first seizure and new diagnosis of epilepsy, as well as what you were, which is drug-resistant epilepsy. And it's actually changed my view a little bit. I work in a tertiary hospital, it's very advanced, got a lot of neurologists internationally, well known. Melbourne's almost a home of epilepsy (I like to brag a little bit!). It's a very good research centre in epilepsy and it's done a lot of research. So, we combine really advanced MRI scanning; not just taking a picture of your brain and seeing hippocampal sclerosis like many, many years ago, but we look at the brain function, we look at quantitative measures. We look at you watching a movie, we look at how your brain switches, how the networks work, and all of that sort of thing. So, we create a digital twin of your brain. We then also do neurocognitive testing via telehealth (so we can do it in your home). And that does all sorts of things like anxiety, depression, suicidality, cognitive performance, all of that. And people love it because it's in their home and has someone pop into the home. We do genetic testing and then we take all of the clinical information, we put this in a multimodal data set and we use artificial intelligence to ingest all of that and work out what's going to happen to your brain. So that sounds fancy, but that's more or less what you would do if you went into a major teaching hospital like Queen's Square with intractable epilepsy like you had. But what's dawned on me is if it was my child who had epilepsy, I wouldn't really want to wait until you really established drug-resistant epilepsy. Let me give you a fact: in our centre in Melbourne, [it has] been doing surgery since the 70s (temporal lobectomies, the sort you are familiar with!), we looked in the early 90s and from the time you had your first seizure until the time that you had your surgery to fix you was an average of 22 years. In 2024 (we've done an audit every year), 2024 - from your first seizure to when you got surgery to fix you: 22 years. And it's been the same ever since, right. This is crazy, 22 years takes you from 18 to 40, you miss a fair bit of stuff if you're having lots of seizures during that time, right?
06:31 Torie Robinson
Yeah, and you literally can't remember it. And also, you just feel so depressed and so awful. It's like two decades or a fifth of a century. Isn't that outrageous?
06:43 Graeme Jackson
So, one of the things we're doing is going outside of bricks and mortar institutions. We're using advanced technology. Going into your home with a team, like via telehealth, you have to have one session where you go to an MRI scanner with this advanced imaging. And then we put this all into the data and we get the same sort of information after your first seizure as people are having after 22 years and then getting surgery. And then we're trying to use artificial intelligence to say “Which path should you be on? Which drugs should you be on? What.. should you have surgery now?”. And you imagine… well, in fact, I built the case around a patient that I saw when she was 18. She came in with, she was having seizures every night. She was living on the floor with no bed so she couldn't crash. Her mother slept in the room with her. And, she was a bright girl doing her final year of high school. And I said “As soon as you finish high school, you need surgery.”. Except there was nothing in her brain we could see. And, we used some of this advanced technology, found a little area of the brain. We operated on her and she came to our Christmas party last year. She's now 7 years seizure-free, she's forgotten she ever had epilepsy, she's now a teacher, she's just bought a house, she's got a boyfriend she's getting married, and she's, you know, she's 26 and she's living a normal life. Now that's what everyone should have. So, we have to be putting this massive effort that you got because you were so terrible, right back to when you had your first seizure. We could have done this.
08:27 Torie Robinson
And also, you know, for the improvement for society as a whole is huge if you're not having people seizing all the time or going to hospital for psych issues or whatever. That's huge!
08:38 Graeme Jackson
The idea is if you do this at population scale, you can't scale me up or all the specialists that you saw in London. You can't scale them up to population scale. But you can scale data to population scale and we are in the data era with artificial intelligence. This is a good use of it, right? This isn't the scary bit of it. And then we can use the bricks and mortar institutions for the advanced investigations and for the surgeries, right?
09:07 Torie Robinson
Right.
09:07 Graeme Jackson
So, we have to change our model of healthcare. Now, what's the benefit of this? Well, we're picking up at least, just by doing these advanced technologies, we're picking up lesions that are the cause of epilepsy in 10 to, in some centres 40% of cases that called, didn't see the cause of your epilepsy. That puts you on a surgical path. We're also finding that by people coming in and going through the AEP; we've got about a 10% increase in their quality of life and about a 10% reduction in healthcare utilisation; just because they know they came to an expert, they know they've had the best treatment they can, they trust us, and they're relaxed. It makes a difference.
09:50 Torie Robinson
Huge difference, huge, yeah, oh my goodness, I totally get that from a patient perspective, huge difference. Know that you're in good hands and you can trust these people and you know what you're doing and you're giving us the best of the best of the best.
10:04 Graeme Jackson
It makes a measurable difference just by coming… and I was a bit surprised when we sort of start seeing this very significant quality of life improvement without really… not even taking into account the people we put on a surgical path or people who changed medications and none of the AI advice. So, we're following everyone for 2 years to see what happens and what the outcomes are. And the data is still being collected but we've now set up a site in every state in Australia. And we've put all the technology in the cloud, ready for AI. And it's going to be an amazing database that's going to help understand epilepsy. But on the way, each individual, we hope, we can put on the right path and help them with their journey and take this 22 years down to 2 years if we can.
11:03 Torie Robinson
And how many patients do you have involved at the moment?
11:04 Graeme Jackson
I'd have to look at the numbers, but we've got about 1,000 and several hundred already enrolled, as well as nearly 500 or more controls (because many of the quantitative techniques we need control analysis).
11:22 Torie Robinson
Mm-hmm.
11:22 Graeme Jackson
And I've used all of the techniques we've developed. So, there's a lot of fancy MRIs, not just like taking a picture.
11:29 Torie Robinson
There's a lot more to it than us lay people like myself [understand]! Yeah, no…!
11:33 Graeme Jackson
Yeah, so there's some fancy technologies there, so this is going to help research to discover better ways of treating it but we've also heavily depended on artificial intelligence to put all this together once we have really strong outcome data so that we can use artificial intelligence to help us guide the path that you should take for your optimal treatment in epilepsy. So that's exciting.
11:58 Torie Robinson
It's very exciting. It's so exciting. I'm thinking, gosh, am I currently in the wrong country? Maybe I need to pop back over to Melbourne or something. This is very cool.
12:08 Graeme Jackson
Well, if you pop in, we'll sort of see what we can do, you know!
12:11 Torie Robinson
Thank you. Thank you. Well, so do we anticipate that? I mean, obviously Australia works a lot with the UK and the States and Canada and stuff, do you, and this is helping people in Australia, but is it going to be helping people in other countries in the future as well, do you think?
12:27 Graeme Jackson
One of the things of doing a project like this is, I treat, I can treat, what, 17 patients a week. You know, as a researcher, I can treat all the patients with epilepsy, you know, in this thing! And, you know, of course, research and medicine is international; of course, we want to do this all around the world, same as all the papers I've ever published! I want everyone to use the information. So, no, we definitely want to expand this, but we have to do the original cohort first to get the proof of the pudding.
13:05 Torie Robinson
You'll have empirical evidence at the end of all of this and it'll be something definitely for everyone to read, I think, these papers.
13:11 Graeme Jackson
Well, one of the things you might appreciate is, when you have a first seizure, you sometimes get an MRI and an EEG and that's about it, and then go on drugs, and then you spin around and you go here, there, and you see another neurologist, all that. What happens now when you've got a first seizure or a new diagnosis? ‘Cause sometimes people have had unrecognised seizures for a bit, which is a slightly different category.
13:33 Torie Robinson
Yeah, like a few years or... yeah…
13:37 Graeme Jackson
But one of the really powerful things is our teleneuropsychology because that can be done in a very open... we've got a software that does this in the home and it can predict things like suicidality, mood disorders, anxiety and we feed that back to the neurologist before they see the patient the second time and it's… what we found is it's made a difference to selection of which drugs you go on the ones that if you've got a mood disorder maybe don't use some certain drugs that we know cause depression and you feel… and so on. And also, even in my own practice, I would have talked to you and talked to you about seizures and this, that and the other thing [and then it’d have been] “Time’s up let's go.”; unless I've got a trigger to say “Really your biggest problem is that you're depressed or you've got anxiety or you've got a mood disorder.”, why would I address it?!
14:27 Torie Robinson
Thanks so much Graeme for getting us excited about the near-future of more accurate diagnoses and improving the quality of life of people with an epilepsy WAY earlier!!
Check out more about Graeme and his work on the website t-or-i-e robinson.com (where you can access the podcast, the video, and the transcription of this entire episode) all in one place, and if you’re new and you haven’t done so already, please do like and comment on this episode, subscribe to our channel so as to get more people learning about the epilepsies! See you next week!
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Prof. Graeme Jackson is the Clinical Director of The Florey, a neurologist at Austin Health, and a Professorial Fellow of the University of Melbourne.
Graeme’s research is in advanced MR imaging and epilepsy, and the classification and understanding of malformations of cortical development.
He has received the prestigious American Epilepsy Society awards for clinical research (2016) and the named Lombroso award and lecture (2020). He has received the 2020 distinguished research award of Austin Health and the National Health and Medical Research Council of Australia achievement award for highest ranked practitioner fellow (2008).
In 2021, as Chief Investigator of the Australian Epilepsy Project, Graeme was successful in securing $30 million funding from the FRONTIERS program of the Australian Medical Research Future Fund to help transform the lives of people living with epilepsy, the largest single federal government investment made to epilepsy research in Australia.
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