Being Involved in Epilepsy Research at iNeuron - Torie Robinson, Epilepsy Sparks - interviewed by Julia Jacobs of the University of Calgary
Paediatric neurologist, scientist, and PPI Lead Julia Jacobs interviews Torie Robinson (!); discussing the role of individuals with Lived Experience in research, particularly in the context of the iNeuron project, which focuses on epilepsy, stroke, and dementia! They explore the challenges and opportunities presented by basic science research, the importance of knowledge translation, and the benefits of engaging young researchers. The chat emphasises the shared experiences across different diseases, the motivation that comes from personal connections in research, and they then talk about the upcoming iNeuron Annual Symposium in Toronto in January 2025!! Transcription and links to the conference below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Julia Jacobs-Levan
Hi everyone, my name is Julia Jacobs and I'm going to be your alternate host today for Epilepsy Sparks because we've reversed roles and I'm going to ask Tori some questions. I mean, you know her all well and I think it's exciting because I had the chance to work with Tori over the last couple of years on a project which is called iNeuron and she has been our partner in crime as a person with Lived Experience. I would really like to know how she felt about this and what we've been doing. I'm just going to ask her some questions. You will see her in the answer position today. Torie, let's go ahead. Maybe we can start with a very simple question. What is a person with Lived Experience and what do they do when they interact with researchers?
00:47 Torie Robinson
Well, a person with Lived Experience can be the person with the diagnosis, it could even be their carer or family member. And how you interact with researchers depends upon, I guess, how comfortable each party is with that interaction. And that's something we've spoken a lot about, actually, isn't it, Julia, when we've had group sessions and stuff like that. But I think something important is remembering that we are all human or vaguely human and we all might have our own sort of like worries or fears or suppositions and I think getting around all of that is often the biggest challenge or can be.
01:33 Julia Jacobs-Levan
That's right. Can you tell us a little bit about iNeuron and what kind of work you have been doing working with us?
01:39 Torie Robinson
Yes, so, it's a really cool multi-year project, one a decent grant a few years ago/a couple of years ago and we're covering epilepsy, stroke and dementia, that's correct, isn't it? Am I saying them all? Yes, which is really cool and in our group of so people affected we have people directly with these diseases/conditions and also a carer as well.
01:54 Julia Jacobs-Levan
Yes.
01:54 Torie Robinson
Yes, which is really cool and in our group of so people affected we have people directly with these diseases/conditions and also a carer as well. And I can't remember what the question was now, haha, sorry what was your question?
12:11 Julia Jacobs-Levan
Haha! The question was like what has been, what have you been doing as part of this project or what has been the role of people with Lived Experience?
02:21 Torie Robinson
Yeah, so well, about a year and a quarter ago now, we all met in Toronto, which was really cool. It was my first visit. And it got together the people with the Lived Experience and the researchers themselves. So, we all had like, well, we had some food and drink and we had a nice hotel. But kind of more importantly, we all met together to discuss what our priorities were and what we wanted to, what we thought we could contribute over this project, what we hoped to get. I guess it was a bit like SMART goals that you talk about when you're seeing your manager at work and your appraisal. It was kind of like that, but not as formal, not formal at all. And we got, like, post-its and made priorities and stuck things on the wall and stuff like that. And it was really quite fun actually. And what was also interesting was that, you know, of everybody involved, some of us we had differing opinions upon what was priority and what we thought about. So, that was quite interesting as well. this project is educational for all parties.
03:31 Julia Jacobs-Levan
That's great. So, I think the group that we formed at that formal meeting is now called as ABLE. So, this is basically all the people with Lived Experience. And I think what's pretty unique about this project is that it is a very basic science-oriented project. basically, except for our group, the majority of the researchers work mostly with cells or animal models and they don't necessarily have clinical contact with the diseases that we are studying. What would you say is that an additional hurdle that it's so basic science or has it actually been a great opportunity for people with Lived Experience? What is your take on this? Like how do you feel it changes the contributions?
04:19 Torie Robinson
I think it's really exciting. To date, largely my experience as a person with this disease has been more sort of surface level, which is equally valuable, but to actually go right down into the dark and dirty, actually basic science and work with people who are, yeah, in sort of like that first… what would you call it, sort of “first stage” of research - is a really cool thing. I think I'm lucky because I've kind of, yeah, read a lot about this and spoken to people like it before, like on the podcast. But I think from what I can gather from other people involved as well, it's a really cool thing. So, I suppose one challenge is sometimes the lingo, we go on about lingo at all, a lot, sorry. And it's not just, you know, the overly long multi-syllabled words that nobody else uses that we, people who aren't scientists probably don't know. It's also just terminology that we're not familiar with. And that's not just because we are people with the disease, it's because we are not scientists in that specific situation. So, I think that sort of thing is challenging.
05:39 Julia Jacobs-Levan
But I think this is why I was so excited to have you on board because I think what we call knowledge translation, like…
05:47 Torie Robinson
Mm-hmm!
05:47 Julia Jacobs-Levan
…you know, make things accessible for everyone is really what you have been doing on a daily basis when chatting with researchers all around the world and breaking it down for everyone to understand what they're actually doing. And I think the funny thing is what we learned very early on in this first meeting in Toronto is that even if we had people with Lived Experience who obviously struggled with the lingo, as you said. The other researchers struggled with the lingo as well, because what I think is very particular about this project is that it's so fine-grained into basic science that even for me as a clinician scientist of 15 years, I wasn't able to follow all the talks. As you said, everyone profited from saying “Hey, let's talk about how we express things and let's talk about how we can understand things.”.
06:38 Torie Robinson
So, something that I'm looking forward to is we're going to rate people's posters and there are many different sort of factors upon which we and how we rate them. But one of the key things is, is it understandable to us? That's something that's so, so important. So, we don't want to just see something that goes over our head, but something that we can actually process. And that's, I think that's a real challenge actually for many scientists who are not used to us, right?
07:10 Julia Jacobs-Levan
Yes. And I think the funny thing is that we are last time we were just meeting, getting to know each other. This time we have very concrete ideas for the conference. I think you already mentioned one of them, which is that we're going to have a poster award from the ABLE group for the trainees of the project with like the idea about like how accessible that you design your poster. You will have the, I think Tori, you're going to be one of the judges for the award. So, you'll be walking around with a score sheet!
07:37 Torie Robinson
Yes! Be afraid!
07:42 Julia Jacobs-Levan
Exactly. And I think the other thing we're going to do, which I think I'm really passionate about, is having an interaction with the young researchers or the master and PhD students within that project and give them an opportunity to chat with all the people with Lived Experience and work with them. And maybe you can tell a little bit more about what you think is…
Torie Robinson (08:06.03)
Mmm.
Julia Jacobs-Levan (08:18.923)
…a benefit for the students when they interact with you, because you've done that a lot.
08:12 Torie Robinson
Yeah well I think so this has happened in my career a lot to date where I'll go and speak to students/researchers and they're really nervous at first and you can't always give them a beverage(!) it did happen last time actually which really helped…
08:24 Julia Jacobs-Levan (08:35.851)
Hahaha!
08:24 Torie Robinson
…haha! But then they opened up more and said “God, I was so nervous to talk to you!” it's like “It’s okay mate, I don't bite!” But, do you know what, I've, the people have said this to me directly, they can find it really like a huge motivation, because they never, right (I think that's a big thing), like they're used to being in front of the computer, reading a load of stuff, you know, if they're in a, you know, regular lab, well, that's really exciting. But what actually is the potential positive impact of your work further on down the line, they never see that. And so, I think from my experience - but also, I hope it will happen here - is that they will find it motivational. We have a great sort of group of people with Lived Experience of different ages, different but very related diseases, and we have a sense of humour. We laugh at ourselves. We can take them seriously, but we laugh at ourselves. And we are very, I hope we're relatively modest in that we know we have no idea what you're doing! “Could you please explain it to us?” Maybe we can share that information. So, I'm really hoping that this almost like empowers the researchers to know that they can not only speak to us next week, but also reach out more to people affected by, you know, whatever they choose to study in the future, they can reach out to people affected. We don't bite, I promise.
09:47Julia Jacobs-Levan
Yeah, and I think that's a super, I agree with you. think the first time many of my students have to - or I encourage to - interact with someone, it's intimidating, which is funny because you always think like, you know, it should be a good thing. And I was really shocked when I learned that some of the students that we met who've been sometimes for years in a lab studying a disease or studying an animal model; they have never actually talked to someone who's affected by a stroke or never have met someone who has a family member who has dementia. And I second what you said about fun, because I thought that was one of the things of the last meeting. Everyone was like, there were several people telling their stories and how they got to the meeting. it was always, you know, having one of these diseases or being affected is of course not always fun, but there is a way of, you know, telling a story that it's relatable and maybe not taking yourself too serious, which is a nice way of doing it.
10:49 Torie Robinson
Yes, I completely agree. you know what, I find that the more I speak to students as well, the more they will find out they totally do relate, whether… it doesn't have to be the same disease they might have experienced, or they don't have to experience something directly. But they'll be like “I understand where you're coming from, because of such and such”. It doesn’t…
11:09 Julia Jacobs-Levan
Yeah, absolutely. And I think one of the nice things is what you just mentioned as well, that in the beginning, I had a hard time envisioning how we get a group of people with Lived Experience with so different diseases…
11:22 Torie Robinson
Mm!
11:22 Julia Jacobs-Levan
…like, you know, stroke and dementia and epilepsy. But I think you have been a huge advocate in the group to say “Hey, we have more in common than we think. And we should not always build up these barriers between diseases, but actually understand what we have in common!”, right?
11:37 Torie Robinson
And that's something I think we in common with researchers, because this happens a lot in research, doesn't it? We've become very focused, understandably, in one specific thing in a particular disease. And then you've got your colleague next door or whatever who's doing something that could be beneficial to you, but you don't see it because you're so focused. And I think that's kind of what often happens with these different diseases. Like, I always think about… I think about dementia a lot because I know as a person with epilepsy, I'm at higher risk of developing dementia…and whatever that other thing was as well…
12:11 Julia Jacobs-Levan
Stroke?
12:12 Torie Robinson
Stroke!
12:12 Julia Jacobs-Levan
Well, many people with strokes have epilepsy, actually.
12:14 Torie Robinson
Exactly, exactly that! And so, I just, and I think most people with a diagnosis, most of us don't realise that that is the case. So, we have heaps to give and share and laugh at and potentially be sarcastic about, I don't know(!)...and hopefully we want research is to be part of that. I think we can work together much more effectively than if we're just almost segregated.
12:42 Julia Jacobs-Levan
And I think this is one of the things I love about the project that I really came to appreciate how much fun it is to work with the ABLE group. Like, you know, how much, as you said, I feel it's very motivational because you relate like, like all the work that you do, can relate it to someone and you can say like “Okay, this is why I'm doing this!”, right? And it's important that we maybe mention all we are doing in iNeuron will not be at the patient tomorrow, right…
12:48 Torie Robinson
Right.
12:49 Julia Jacobs-Levan
…it's very basic science. So, it's not going to impact anyone's life probably in the next 2 to 5 years. It's really like a long-term investment into some of the treatments, but I think it's a lot of fun. Torie, I'm not going to put you on the space to explain what's the science between iNeuron, because if you would ask me this question, I couldn't summarise it. That's what we learned. It's very complicated, but maybe we can put a link in the bio where we show the knowledge translation work and the graphs that we've been working on so people can read up a little bit more on the project. And then what is the thing you're looking forward most to when you travel to Toronto next week?!
13:48 Torie Robinson
Ummmm there are heaps of things! I'm trying to take it step by step. So, first of all, I'm looking forward to flying because I really like that!
13:57 Julia Jacobs-Levan
Hahaha!
13:58 Torie Robinson
And then I'm…hahaha! And then I'm looking forward, actually, to being in really cold weather because I was moaning about it being -3C this week and then I realised, “Yeah, get a grip because next week's going to be a bit nippier!”. But I'm… but more seriously, I'm really looking forward to seeing the team again, including yourself, obviously, our lead…
Julia Jacobs-Levan (15:02.572)
Yeah.
Torie Robinson (15:23.618)
…because we've had loads of online calls, haven't we, to keep in touch with each other and prepare for this as well, but see all our work sort of and preparation be implemented and really, and have a great time. I'm preparing to be tired because it's going to be a lot of fun.
14:34 Julia Jacobs-Levan
Yeah, that's right. Well, I cannot share your love for flights, I have to say!
14:38 Torie Robinson
Oh really?! Okay cool.
14:38 Julia Jacobs-Levan
But I'm very much looking forward to seeing you. And I think we also have a little bit of plans. Hopefully you can interview some of the researchers there so people can learn a little bit more about what is iNeuron, what's the science behind it, what has our work been doing. So, I think that's going to be really cool. We are going to have a lot of fun and maybe you can find some drinks to make people talk. I heard that this is one of your secret recipes.
15:07 Torie Robinson
It really helps, man! Yeah, maybe we should focus on interviewing people more in the evening, then you know, when they feel more comfortable having a beverage or 2… but, yeah it helps!
15:19 Julia Jacobs-Levan
That sounds good. Well, thank you so much for allowing me to be the host of your podcast. And I know that this has been a bit of a reverse role for you!
15:59 Torie Robinson
Yes, yes it has, but I deserve it and I thank you for the opportunity as well Julia. And I also want to point out to everybody: none of this would be possible without Julia, who is so, so passionate - as well as being, you know, a clinician and researcher herself - is so passionate about actually improving the quality of life for people. And that's how one way in which we're doing that now is by getting, you know, us involved in this. So, we thank you very much.
15:54 Julia Jacobs-Levan
Well, thank you very much.
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Julia is the lead of and part of the research faculty of the iNeuron project.
Julia is also director of the Pediatric Epilepsy Program at Alberta Children’s Hospital, and lead of the “knowledge2 empower” project.
A specialist for child health and development, Julia is passionate about finding the best ways to to improve the lives of children with epilepsy.
Julia is also an associate at the University of Calgary, serves as an Associate Editor for “Epilepsia” and “Clinical Neurophysiology-Neurophysiologie Clinique” and is on the editorial Board of “Clinical Neurophysiology”.
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Torie Robinson is the founder and CEO of Epilepsy Sparks, the host of Epilepsy Sparks Insights, and PPI Lead for PRISM.
Torie is involved in multiple research projects including those covering stigma, medtech, and funding.
Public speaking: having had both brain surgery for her epilepsy and stints in psychiatric hospitals, Torie provides a gripping, deep insight into the real world of psychiatric and neurological illnesses.
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iNeuron teamineuron.com
iNeuron - People With Lived Experience teamineuron.com/our-team/#advisory-board-for-lived-experience-of-stroke-epilepsy-and-dementia-able