Jen Lyman (00:00:00):
Welcome to Cerebral Palsy Health. I'm your host, Jen Lyman, and on today's episode I have Dr. Adam Kirton. He's a pediatric neurologist who is studying brain computer interface for individuals with complex forms of cerebral palsy. I was so excited to have him on the show. I've been a skeptic of brain computer interface with cerebral palsy, and this episode really has changed my mind and my outlook and has given me hope for the future of this technology for our kids and youth and adults with cerebral palsy, especially the complex forms. Dr. Kirton is the director of the Calgary Pediatric Brain Computer Interface Program. It's called BCI for Kids. He's also the director of the Calgary Pediatric Stroke Program and is a practicing pediatric neurologist at Alberta Children's Hospital. He was inspired to launch the BCI program after learning about the potential of BCI technology to help kids he saw both in his clinical practice and through his research in perinatal stroke.
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He has brought together a multidisciplinary team to tackle this challenge of adapting BCI technology for children. His vision is to ensure children with physical disabilities have access to this cutting edge technology that can increase their independence and participation in the world around them. And when he's not seeing patients or leading his research teams, he loves skiing, golfing and biking. I hope you all enjoy this interview as much as I did. I really did feel like this is a conversation that counts with an expert who cares.
Jen Lyman (00:01:47):
Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility, issues that could be confusing or controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction, tackle tough to understand topics and try to shed light on how best to maximize and optimize health, participation, and quality of life for those with cerebral palsy.
Jen Lyman (00:02:26):
I'd like to welcome Dr. Adam Kirton to Cerebral Palsy Health, Conversations That Count with Experts Who Care. Dr. Kirton or Adam was referred to me from our executive director at Cerebral Palsy Foundation because of your participation on our breakthrough summit that we recently had. I've since been cyberstalking you and have watched a really great lecture that you did at the Weinberg Center on BCI. And I've got to say, I can't wait to have this conversation with you because I have been so skeptical of BCI. And when I saw some of the videos that you showed in that presentation, I was crying. I saw my son, I saw what the possibilities were, and it's really, really cool. Your work is so inspiring and I can't wait for other families to learn from you today and hear about what you're doing. And hopefully we can help spread the word and get this technology out there.
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So welcome to the show. I'm so excited to have you on.
Adam Kirton (00:03:37):
Great. Well, thanks for having me. It's a pleasure and I'm glad to hear you're starting from a place of skepticism.That's actually a good place to start. Keeps us honest, and hopefully I can add to your optimism with our discussion.
Jen Lyman (00:03:53):
Thank you. I'd love to know what got you started. What motivated you to get into this field and do this work?
Adam Kirton (00:04:02):
Sure. So I'm a pediatric neurologist and I've been doing that for almost 20 years. And my original background was in perinatal brain injury, stroke in particular. And we built up a research program here in Calgary focused on that problem. These were children with strokes around birth, most of whom had cerebral palsy usually just on one side of the body. And we spent the first 10 plus years really focused on trying to understand how those children's brains would develop after such an injury. And we used a lot of technology, imaging, brain stimulation to try to map their brains and then translate that into new treatments, things like brain stimulation and other types of therapies. And that line of investigation made lots of progress and we've learned a lot from that. But it was working in that sort of cerebral palsy space and technology that about seven or eight years ago opened up our eyes to the possibility of brain computer interface and really shifted the focus of my program more towards kids who have more severe forms of cerebral palsy, kids who are quadriplegic and maybe have very limited abilities to move.
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So I kind of moved over from that related space of CP and technology into where we saw even greater potential for BCI. And that's been our focus now for the last five plus years. Yeah.
Jen Lyman (00:05:42):
And it seems like you guys have been making remarkable progress just from looking at the sheer number of papers that you've written and the publications as well as the growth that I saw just in Canada, starting with your group, and then it looks like it's expanded to an entire Canadian and US consortium, which is really exciting.
Adam Kirton (00:06:06):
Yeah, the interest has really grown quickly. And I think our Canadian group has been pushing that. We started a program here and we had colleagues, collaborators in Edmonton and Toronto who each of us doing a bit of our own thing, but trying to work together to start a rudimentary Canadian network that's now expanded much more broadly. And yeah, lots of interest is really starting to drive the field. Yeah,
Jen Lyman (00:06:35):
Super exciting. Well, I guess for me, I think it would be really helpful and hopefully others maybe start out broad and talking about what BCI is in general, and then we can whittle it down to CP and how it really relates. So I guess what is BCI? What is brain computer interface? This sci-fi thing that we're talking about, how can you explain that?
Adam Kirton (00:07:03):
Sure. So the overall concept is actually not too complicated. The details get a bit technical, but the basic idea is that we're all constantly using our brains and making brainwaves. That's how our brains run. And if you intentionally do something, anybody listening could do it right now. You could think about something. You could think about, let's say, opening and closing your right hand. If you did that for 10 seconds, it would produce a very predictable response on alteration in your brainwaves. We would know about in a typically developing person, we could tell you where that would occur. We could tell you what it would look like if we were measuring your brainwaves. So how do you do that? There's different ways, but a simple non-invasive way is to put a cap on that's called an EEG. And with some sensors just resting on your head, we can look at your brainwaves.
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And we do this all the time for people with epilepsy and other reasons. But if you're doing that and measuring the brainwaves, and then I ask you to perform that specific thought, let's say for 10 seconds, and then I tell you to rest and think about nothing for 10 seconds, and we go back and forth between those two states a handful of times, all the while sending your brainwave information to a computer and telling that computer, "Okay, here he is thinking about his right hand, here he's not. " The computer can quickly look at the two states and recognize the difference and say, "Oh, now I can tell when he's thinking about his right hand." That's how BCI works because once you've established that, the computer, it's not reading your mind, but it can see these intentional changes in your brainwaves. So then you could tell that computer, okay, the next time he does that, he wants you to do something.
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He wants you to push a button or make a remote control car go forward or move a computer cursor to the right on the screen. That's the connection. So you're taking a person's brainwaves, educating a computer to recognize intentional changes in those brainwaves, and then choosing an action for that computer to then take when it sees the thought, the intentional change that you're making.
Jen Lyman (00:09:24):
Yeah, you make it sound very simple. I doubt that it's as simple as you're explaining, but I understand now it makes sense to me. And I'm just jumping ahead a little bit, but I'm assuming that you do that with multiple tasks and you can map multiple things so that somebody could potentially control multiple directions of that mouse or-
Adam Kirton (00:09:53):
Potentially, yes. So it depends. One concept depends how good is the brain signal information you're getting. So BCI's been around for decades and there are some people in the world who have had an implanted brain computer interface, that is they have a small chip right in the brain. That's obviously a very involved process, but it gives very rich information. And so this has only been in adults, never yet in someone with cerebral palsy. We're going to change that soon. But with that kind of very advanced, very rich brain information, yes, to your question, you could acquire multiple commands, multiple degrees of freedom, you say, to do many things. And there are adults in the world who can do that with an advanced BCI. Where we've started as a much more simple level, non-invasive BCI, like the CAP that I mentioned a few minutes ago, that has good information, but it's pretty crude.
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It's the EG signal is much weaker, so it can pick up general trends in the brainwaves, but not very discreet information. That doesn't mean you can't learn more than one command. In fact, we have some kids who have two or even three.
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And I should also say you can use the same approach. You could have a single brain command, but use it to do many different things. Okay,
Jen Lyman (00:11:16):
That makes sense.
Adam Kirton (00:11:17):
Yeah, like a switch, which I think most people are familiar with, but a switch, if you're a person with a physical disability, if you might have enough movement that you could push a button or make a choice like that, yes or no, stop or go. Simple BCIs can have that kind of switch level function to maybe make a choice between two things or activate something, which for young people who can't move can be really liberating, can be really, really important.
Jen Lyman (00:11:48):
It's a big deal. Yeah. So I think you're answering this, but when you're looking for everybody, I guess we've got implanted BCIs and then we've got external devices. Are those the two ways that they're currently being explored and being used?
Adam Kirton (00:12:10):
Correct. Yeah. And so they are sort of maybe feel like two ends of the spectrum of the BCI world, and because we're focused on young people with cerebral palsy and other complex conditions that they've had since birth, the implantable side is, in fact, BCI in general has generally been left behind. Children have been left behind in the BCI world because their brains are quite very unique. The contrast is most BCI work has been done in adults with paralysis who have grown up with, in a normal way, have typically developing brains, and then they became paralyzed with ALS or a spinal cord injury. Their brains are pretty hardwired like yours and mine, and you kind of know where everything is, you know where to put the chip, you know where to measure the signals. People with cerebral palsy have very unique brains and they don't follow those rules.
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That's one main reason why kids have been left behind. That means that the implantable side is well behind, although we're starting to catch up.
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Using the non-implanted, the non-invasive types we think is really important groundwork to lay, partly because it's relatively quick, it's very safe. And even if it's just simple things, if we start doing those, and we might come to it, but since we built the program, have worked very closely with families, we have a very strong patient engagement program, we're learning the early lessons of what do young people with quadriplegia want these things to do? What are their goals? What do their parents hope that their child could do? And we let that really drive our research program. It's answering questions now for the non-invasive types of BCI, but it's giving us data towards the more complex BCIs. We'll learn as we go. These are the goals of families. These are the targets. How should we design these complex things to meet those goals? Much better to rely on the families than on the neurologists or the engineers or the other people.
Jen Lyman (00:14:23):
Well, I saw one of the things that you've developed an interest in is the Paralympic sport of Boccia. And I know that as a family, that's something that I've found to be a potential goal for my own son. We like the game anyway, it's a fun game and we as a family like to play it out on the beach. And we were thinking, oh gosh, and when I saw this, I was like, this could be a way that he could participate in a game that we love. And so I am kind of curious, what are the goals that the families are asking about or would want? I know what our goals would be as a family, being able to FaceTime his grandmother independently. That would be my son's goal. He would tell you that if he could. I'm just curious, what are some of the goals that ...
Adam Kirton (00:15:16):
Yeah, there have been a lot and we've tried to really make it an open book. Within reason, of course, these noninvasive systems, as I said, are still pretty much at the sort of switch on, off, make a choice level. So they can't turn your thoughts into speech yet. I mentioned that one first because communication is a popular one, but this is families tell us how could he or she communicate better? We can't do thought to speech yet, but what about integrating with some simple communication apps or even just yes, no choices or you might be familiar with switch scanning. We have applications now on the iPad that you can set up to do some simple switch scanning to allow kids to use their brainwaves to wait for the one they want and make a choice. So rudimentary communication, but practical. I like that you use the word participation.
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That's our mantra here, and a lot of the goals are around that. So regular, you use gaming, playing a game with a family or a sport like Boccia, which we are working on that the idea of a young person with quadriplegia competitively, if they wanted to, playing a sport is really exciting. We have a couple of studies coming out about that,
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But a lot of it's more other just day-to-day things like playing music, their favorite song where one of my grad students is developing an app to teach kids how to learn music using BCI, which is about. Art making paintings with a modified system is very popular. Video gaming, not surprisingly, is very popular with teenage boys in particular, not to be too gender biased about it, but I have two teenage boys, they have video games and we have some who are very good at video games. And we actually, my colleague, Dr. Kinney Lang, who runs the engineering part of our program, just hosted a game jam and had 80 game developers here developing video games specifically for BCI.
Jen Lyman (00:17:28):
Wow.
Adam Kirton (00:17:29):
And the kids are judges, and so that's very popular. We have kids who do cooking at home. They chop the vegetables and mix the blender, and these are simple things that they could never do before, so they're active participating. These are just some of the most popular applications.
Jen Lyman (00:17:55):
All of these are goals that are near and dear to my heart. My background as a recreation therapist and spent time working on different places along with being a mom. And when I've been working on inpatient rehab with some of the kids that are coming out, these are always goals that we're talking about, talking about things like being able to play video games. And me as a mom also, I'm not a gamer and having kids teach me how to play the game sometimes when they can't move their bodies anymore. They used to be gamers and then teaching me, okay, this is how we play this and having me do it. Me thinking now, gosh, with one of these devices, you could potentially, it would be so much easier for everybody.
Adam Kirton (00:18:46):
And it's a way to level the playing field. This is one strategy that yes, they would love to play a video game. Would they love it even more if they could beat their parent or especially their sibling at the same video game? We've seen that. We've had kids who used to have to sit and watch their siblings play video games who were able-bodied, and now we can get them both playing with the BCI, and now it's a level playing field. And usually the kid who's had more experience with the BCI is better. So now he or she gets to beat their siblings.
Jen Lyman (00:19:18):
That's cool. That's super cool.
Adam Kirton (00:19:21):
It's nice to see. Yeah.
Jen Lyman (00:19:22):
Yeah. Well, with this, it seems like you are really focused on kids and CP. And I notice, I guess another part of my job is recruiting for clinical trials. So I do spend a lot of time looking at what's happening on clinicaltrials.gov. And I have noticed that CP is largely left out of these BCI clinical trials. I'm curious, generally, who are the main players in the space for, even for the adults, because we all hear about Elon Musk and Neuralink, but he's not looking at kids with CP, at least I don't think he is, from what I can tell.
Adam Kirton (00:20:05):
Yeah, we're trying to change that. On the implantable side, which is really the very progressive approach to BCI that if ... And I think that it will be in the coming years to be realized for people who can't move to do very complex things with their own brains, that will come from the implantable side. The big players are, there are people around the world doing it, although there's still only about a hundred people in the world who've been implanted with a BCI of some type.
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There's a large consortium in the US called Braingate at a lot of the leading academic centers. They've done a large proportion of that. We work with them. They're interested. We hosted the big BCI world meeting here last summer and we tried to put kids on the map and all those experts were there and they listened. They told us that they hear it now. They're like, some of them have been on board for years. They are trying to help us to expand to that population. It's hard enough to do BCI even for adults. So the big challenges of CP and young people, these people aren't afraid of challenges, but it's taking time.
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We work with other colleagues in the Netherlands who've been doing one type of implantable BCI also for adults, but they're very passionate about kids in CP, so we're collaborating with them a lot. And then we are connected to multiple companies where we're trying to push the pediatric agenda, spoken to Neuralink, and they know, of course, they're companies, so they have to go where the market is. As the CP Foundation Summit last month, the statistics on the global burden of disease, especially years lived with disability compared to ... Sadly, adults with ALS usually only live for a year or two. Young people with CP live very full lives for many, many decades. And there's millions of affected people around the world. So sometimes talking to a company, they're interested in the science, they're interested in the technology, but they have- The
Jen Lyman (00:22:18):
Economics.
Adam Kirton (00:22:18):
... has to be tied to the economics. Exactly. And so we try to advocate like CP Foundation does. We try to make people aware this is a huge problem. And to them, huge problem sounds like huge markets. So they start to listen to you. Then they get scared because you go, well, their brains are really complex and I don't know quite yet where you should put your advice. But there is interest from them. I have a call tomorrow with another company that has now implanted multiple adults. It's a slightly different implantable approach, but they've implanted now multiple adults with a unique type of BCI. We've, I think, captured their interest in knowing more, thinking more about kids in cerebral palsy. So that's how the whole field is progressing on the academic and the industry side. And slowly but surely the pediatric component is getting traction, I would say.
Jen Lyman (00:23:19):
Gosh, well, even the entire adult population of people with CP, thinking about, we're leaving them out
Adam Kirton (00:23:25):
Too.
Jen Lyman (00:23:27):
So it's a huge market. And yeah, I know we are as a foundation, like you mentioned, but I think the economics of it make a lot of sense. I mean, that's also me as a parent saying, "Hey, we
Adam Kirton (00:23:41):
Need to
Jen Lyman (00:23:41):
Do this. " And I guess this does lead to my skepticism. And my skepticism has always been that we have an insult or an injury to a developing brain, and their brains have developed differently than a typically developing person. So I guess how do you determine who are the best candidates in these kids for BCI? What's that process like and how do you know as a parent, how would I be like, okay, yeah, my kid's definitely going to be a great candidate for this or maybe ...
Adam Kirton (00:24:22):
Yeah, it's a really good question. My answer's evolved over recent years. To the first part of your question, I mentioned before that we started in stroke, which are very discreet injuries on one side of the brain, beginning of life. The rest of the brain is healthy and incredibly plastic. We've studied that because I've trained like a neurologist, so I'm like, I want to know where everything is and I want to go to that spot and that's the right spot. I've had to let that go in the world of quadriplegic CP, which is, of course, your audience knows that's not one disease, that's probably thousands of different underlying brain conditions in all in unique individuals. So you have to let go of those hard and fast rules of that some scan or some test is going to say, "Oh, this entirely explains this young person's brain.
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Just put a sensor over here and you'll have everything you need." We know that's not going to happen. The flip side of that, to the second part of your question, how do you know who's a good candidate? We also started a bit restrictive in that I had patients in my practice and it wasn't hard to recruit families where what we thought was the ideal candidate. So a young person who'd had perhaps a common type of perinatal brain injury, hypoxic ischemic injury is the most common. If you've had what's called the acute total version of that, a lot of those kids have had a very discreet injury where they have very severe motor impairments, but often preserved the cortex, the surface of the brain, many are very intelligent, intellectually normal, but they can't move at all. And so in a simplistic neurologist way, I said, that's the perfect example because you have severe motor impairment, but you are extremely capable developmentally, intellectually, you have capacity.
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And some of our participants do fit that kind of mold of what sometimes is called locked-in syndrome. So a young person who fully has no other limitations other than their severe motor disability, but of course it's very complex as I've already said. And so that certainly doesn't mean that a child whose brain condition perhaps also gives them some other developmental challenges should be precluded from the opportunity to try a DCI. And then of course, we started working with some of our colleagues in this space and they started asking the really hard questions. They're like, well, what about the kids with cerebral visual impairment because some of the HCIs aren't going to work for them and what about the kids with hearing impairment and both the kids with sensory dysfunction? And so it's very hard to tackle all of those problems at once, but we've loosened the inclusion, we say inclusion criteria because these are all part of research studies, but we're much less restrictive and to try to finish answering the question, but- No,
Jen Lyman (00:27:26):
You're answering my next
Adam Kirton (00:27:27):
Question
Jen Lyman (00:27:28):
Anyway in the same-
Adam Kirton (00:27:29):
Okay.
Jen Lyman (00:27:29):
Yeah.
Adam Kirton (00:27:29):
The one approach we're lucky to take now that we have a program here and a system and people trained is we have a fairly inclusive program where we have the opportunity to at least give a family a chance to try BCI. So we get a referral, we have a referral system now, myself and our lead therapist who's very experienced doing assistive technologies, we look at the information and we say, okay, this person is someone, this is a young person who might be really good at BCI. They should definitely try and they come in and they try and the intro process is pretty quick. We can usually tell in one or two sessions if they can do something simple or not. And if that's true, then they can continue to try. Other times I'm more skeptical as the neurologist, I'll look at their MRI scan, for example, or their EEGs and I'll say, gee, of course we listen to the parents and the caregivers who are feeling like there's a lot of potential there that the young person can't realize because of their motor impairments or their limited communication.
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We put a lot of stock in that. I can tell you a story about that. But sometimes the brutalness, for lack of a better word, of their injury, if it was an injury or their condition is so severe that I have to be honest and skeptical. And I have to say, I don't think that their brain can generate the kind of control or brainwaves that will be necessary to make a BCI work. We still, luckily still now can be fairly inclusive. And I will tell parents that. I'll say, I know you've heard about it. I know you want to try. I want to be honest. I really don't think it's going to be possible for so- and-so, but just so you don't feel like you've missed an opportunity, we'll do the intro part anyway, and we'll be honest, we'll say, and maybe it works, but probably it won't.
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And so we've managed a system that lets us do that. I think fear of missed opportunity is once people hear about things like this, they don't want to miss the opportunity. And so I think we have to respect that and try to address it. As we study this and learn along the way, it'll improve our predictive ability probably so that we can share with more broadly and say, "Here's the kind of young person that has at least good or very good potential versus if you see this kind of pattern, we can tell you it all virtually for sure is not going to work." I think that has its own value because then we'll have to take away opportunity.
Jen Lyman (00:30:22):
No, yeah, I think that's a really good point is that ... Well, I like that fear of missing out FOMO is your motivator here and fear of missed opportunities, I guess. So it's the same, we'll just go with FOMO. And I think it's right, the idea that you can collect the data and be able to look at all these kids and be like, okay, these might be the better candidates, because right now we don't know. And I know I always weave in these stories about our family and my son, but for us, I think what has made me the most skeptical for him is his visual issues. And we can tell that he knows so much, but then when we watch how his visual issues limit him, and then I think about BCI, I'm like, it seems like that still relies on a lot of visual stimuli.
Adam Kirton (00:31:24):
Yeah, not necessarily. There are a bunch of different, we call them paradigms, but there's a bunch of different ways that you can activate your brainwaves to make a choice or to do this. Some are visually dependent, some are not, although we tend to teach it in a visually dependent way, and it might require them to look at a screen to make a choice, which becomes not an option, obviously, if they're severely visually impaired. However, there are other paradigms that are more auditory-based. There are some that are self-controlled, users trying to change their brainwaves in a certain way that you can teach verbally, doesn't have to be taught visually. And so we have several kids in the program who are severely visually impaired, but who are able to do different paradigms too. So it can be modified to accommodate different types of comorbidities or
Jen Lyman (00:32:28):
Disabilities. Yeah. And I was thinking about that. In some ways, this all reminds me of cochlear implants and the whole concept behind the cochlear implant. And I guess that goes to hearing impairments. So I'm assuming that the same idea with vision would be similar with hearing impairments.
Adam Kirton (00:32:49):
Correct. Yeah. There aren't that many conditions where most kids, as you probably know, with severe quadriplegia usually have intact hearing, although we have three kids, I think in the program now who have severe hearing impairment and are maybe the opposite of what we were just saying, more dependent on visual paradigms and visual learning. There are two who have cochlear implants as well. So I guess the way to summarize that is there are different pathways. There are different ways that a user can use their brainwaves to try and control something, and there are ways to adjust that around other types of disabilities that they might have.
Jen Lyman (00:33:38):
Well, you said that you had a story about somebody who you guys were skeptical of.
Adam Kirton (00:33:44):
Oh, or yeah, it was just a fairly recent referral because one of the therapists who works in BCI who also works on the floor, and this boy had come from another hospital, a teenager who'd had a severe hypoxic ischemic brain injury and was thought to be not present, thought to have a minimally conscious state. But the therapist astutely noted something mom said about, or they had a movie on or something, and they're like, "Oh, he loves this movie." And they're like, "How do you ... " And then he laughed at the right part of the movie and the therapist was like, "Wait a sec, he's obviously listening to this movie." And the other hospital, not to be critical, but just hadn't appreciated that. And his injury was obviously very severe, and so they perhaps made some assumptions. And so she said she put in a consult through the system for a BCI consult.
(00:34:44):
That was the first time that had ever happened. And sure enough, by two days later, this boy with the help of not me, but our therapist was able to flip his YouTube channel and flip videos on YouTube, which is what he liked to do. Yeah, that's what a
Jen Lyman (00:35:08):
Normal kid does.
Adam Kirton (00:35:09):
Yeah. And I remember I went and met him when the consult, and it didn't take long talking to mom. Of course, mom's parents, moms in particular always know. And she was able to quickly give me multiple examples of, oh yeah, this is how I know that he's here and there and he understands. And so he's gone on to do a bunch of things and yeah, wouldn't have happened without that. It's a bit of serendipity. You never know if it wasn't that therapist who had just started working in BCI, who happened to be the one who went to see him on the ward, we might not have met him.
Jen Lyman (00:35:55):
That's really amazing. And it leads me, I'm thinking about that kid and thinking about how BCI works, in a situation like that, can it also be used as sort of a rehab tool and can it help somebody, I guess, rewire or repair their brain after an injury?
Adam Kirton (00:36:17):
Yeah, we don't really know that. We do have a study that's just coming out about for kids with hemiperetic, one-sided cerebral palsy, the kids with stroke, who I mentioned earlier is a big population we're interested in. There is some evidence mostly from adults, but that you can reconnect if you like a person's motor control in their brain with a poetic limb, a modified version of BCI combined with electrical stimulation might be able to do that. And so there's some early work there in kids that is interesting. People have tried BCIs for other types of sort of feedback for cognitive recovery, things like that. That evidence is still pretty weak, so whether it can really rewire or repair is not really known, but-
Jen Lyman (00:37:09):
It's more the brain reading and functional tasks and participation side of it and
Adam Kirton (00:37:17):
Helping you to- Although those two start to blur together quickly, because if you think of a young kid who wants to learn how to play music, like the example I gave earlier, and you provide a new pathway for them to actually do it, I'm quite sure that's going to change their brain. If
Jen Lyman (00:37:33):
They're
Adam Kirton (00:37:34):
Able to participate and learn music,
Jen Lyman (00:37:36):
That's
Adam Kirton (00:37:37):
Plasticity, that's brain growth.
Jen Lyman (00:37:39):
Exactly. So
Adam Kirton (00:37:40):
It's doing it. So they're related concepts, I guess.
Jen Lyman (00:37:47):
Yeah, that makes a lot of sense. In your lab currently, first of all, I'd love to see your lab. It sounds amazing. How many participants do you currently have and what's this looking like?
Adam Kirton (00:38:02):
Yeah, our program, we're just trying to put together a published summary of it has about between 40 and 50 families that have been through over the last four years or so. Each has their own pathway. So as you I'm sure understand, these families have children with complex medical needs. So some will engage initially, we try to do this all goal-based, so they'll set a goal. If they're in what we call our clinical program, which is part of the healthcare system now, they'll get an episode of care, so they'll have six or eight or 10 sessions to try to achieve their goal. For some families, that'll occur over a couple months, then life gets in the way. These children often have serious illnesses or they need major surgery, and so we don't see them again for a year. So that's what I mean is each sort of plots their own course.
(00:39:02):
If we include all the kids who've been in at least for one goal or episode of care or perhaps part of a research study, it's about 40 or 50 kids. We built that up over the last five plus years through pretty systematic recruitment. We're in a single center tertiary care children's hospital, and luckily all our rehab is under one roof. And
(00:39:25):
So now that people are aware, we get referrals from neurologists and physiatrists and therapists who would just have a radar up now of like, oh, I wonder if you could do BCI. And so we have some data, but we feel like we're probably going to level out at ... It's still growing. I got two referrals today, but we're estimating it'll level out around maybe 60 or 70 families that would be actively engaged, which is good. It doesn't require a huge team of people because it's a pretty relatively uncommon scenario. And that's to make it relevant. We're a city of 1.3 million people. We serve a catchment area of two and a half million, and that turns into 50, 60, 70 families once we've built it up, early running in time.
(00:40:21):
So that's how we've gotten some buy-in from our healthcare system is we have now a couple of dedicated OTs for a day or two a week. We have my research OT who runs the whole thing. We'd like to see her get paid by the healthcare system. We don't have to pay her out of research grants. We have some engineers. You said you're a recreational therapist. We have a couple direct therapists who participate, therapy assistants, speech and language. So it's quite a very diverse team. We have a bunch of grad students and postdocs who do a lot of the work.
Jen Lyman (00:40:55):
And so this is all referred through your healthcare system. It's not a national or international referral?
Adam Kirton (00:41:03):
It's local. Yeah, it is now.That's quite new, which is quite proud of that actually. It's very hard to get things. We're in a publicly funded healthcare system. It's very hard to get new things covered. And so I think it's a testament to its value that there has been uptake by the public system. For the first five, seven years, we had to pay through it all through research grants, which we still need to keep it growing, but it is now into the hospital system, the referrals, they all get entered clinical episodes of care they're called. So it's starting to implement or translate into the actual healthcare system, which is exciting.
Jen Lyman (00:41:46):
Wow. And what do the sessions look like? So if a kid's coming in for 10 sessions in a year, just thinking about even your traditional PT or OT, some of these, it could be too long, it could be very long and taxing.
Adam Kirton (00:42:05):
Yeah, it varies by each individual family each day. The typical bookings I think are for 90 minutes, of which there might be five minutes of good work or they might go nuts for two hours and do something the whole time and everything in between. Depends on the mood, the behavior, whether the system's working or not, technical glitch. But that's typically what it looks like. And the most engaged families try to set up a spot each week. They'll come Friday afternoons at one and do that for eight or 10 weeks in a row to try to work on something. We also have a home BCI program. I was
Jen Lyman (00:42:51):
Just going to ask that. Do they take this home?
Adam Kirton (00:42:53):
What happens
Jen Lyman (00:42:54):
After those sessions are finished?
Adam Kirton (00:42:56):
Yeah. So we've had some families do that and we just funded a large trial that's just started about three months ago, and I think we're on the fifth family now. So they come in, they get set up with the technology and learn how to use it, and then one or two visits, and then they do the rest of the study all at home with virtual support. And it's really the aim of the study is to prove the feasibility of that because obviously that will make translating it out to larger populations, and we're trying to get it out to more rural locations and underserved populations, and so far so good. We think we've certainly seen some families succeed at that, and other families might need the support of the hospital more so, but for others, some are very tech savvy and they're just great problem solvers.
(00:43:53):
They're like, I can do this, just teach me how to do it, be there to answer my questions. And so some families have really embraced that. And hopefully that will continue to evolve.
Jen Lyman (00:44:07):
Well, not to get back into the economics of things, but that also seems to be a really good ... This type of study would be a great impetus for commercial use and selling this.
Adam Kirton (00:44:19):
Correct. Yeah. Yeah. There are some emerging technologies that are trying to use that approach. So simple systems that you can ... One that we've developed is now an iOS application. It's supposed to go on the app store next week I just heard.
Jen Lyman (00:44:41):
Oh, wow.
Adam Kirton (00:44:44):
You can sign up on the website, it's Possibility Neurotechnologies. It has an early adopter program, so you get a newsletter, tells you what's coming out. You can download the app onto your iPhone or iPad, purchase a very simple EG headset online with a discount. And so we've had ... I was just on with the person who runs that, and I think we're up to over a hundred users internationally. And so that kind of home-based ... We don't want to call it do- it-yourself. It needs some guidance and some technical support, but for some families, I think it really empowers them to not be dependent on a therapist and a hospital and I think that it will be the quickest way to increase access and scale.
Jen Lyman (00:45:38):
And then you certainly can research that as well and start- Right.
Adam Kirton (00:45:44):
Yeah. And we are. Yeah, the company is doing its own research and the BCI at home trial that I mentioned, really systematically studying a similar approach, identifying the barriers and facilitators for implementation. And so yeah, they're complimentary streams that are evolving together.
Jen Lyman (00:46:07):
That's super cool. And a little backwards or backstepping a little bit, as far as the kids in your program are concerned, what are the ages and what are you finding with the ages? Is it better
Adam Kirton (00:46:20):
To
Jen Lyman (00:46:20):
Train the younger kids or is it harder?
Adam Kirton (00:46:24):
What's
Jen Lyman (00:46:24):
Working? What's not working?
Adam Kirton (00:46:26):
They're all each such unique individuals. We don't have any hard data on age as a predictor. When I started it originally, we said the perfect scenario we're like, well, they probably need to be grade one developmentally just to get the concept and be patient enough with behavior to do the training. We've changed all that. And so we have three-year-olds in the program. We had a two-year-old in the ICU. We sometimes try this in ... I do neurocritical care in my clinical practice, and we occasionally get kids who are acutely paralyzed in the ICU. I was a two-year-old last year who was able to do it.
Jen Lyman (00:47:06):
Oh, wow.
Adam Kirton (00:47:07):
And so we've dropped that. It's a factor. I just got referred a 15-month-old, and we're like, I think that's too young. Even if their brain is developmentally on track, that's still too long. But anyway, the point is quite young. And then all the way through and through the research program and we're trying to change the clinical program that we do have participants now who are 19 and 20, would like to expand to be able to engage more young adults or adults at any age, to be
Jen Lyman (00:47:41):
Honest. That'd be
Adam Kirton (00:47:43):
Wonderful. So that's a little tricky in this children's hospital. They get very mad at you if you see people who are 18, but we're working on that.
Jen Lyman (00:47:52):
Well, if you get them in before they're 18, you can just keep them in there
Adam Kirton (00:47:56):
Secretly. That's been our approach so far.
Jen Lyman (00:47:59):
Yeah. And I guess you could partner too with some adult programs and hopefully keep them that way. I guess what have you found are the most challenging aspects of all of this work?
Adam Kirton (00:48:18):
Yeah, there's lots. The technology is challenging. The number of applications keeps growing and this amazing team of engineers that we work with are very creative in finding all sorts of cool new things. The biggest challenge technologically is the headsets, actually. Interesting. We're working with a bunch of companies, we're thinking about trying to design our own. It's hard to find, and each person's different. Their head shape's different, their movement disorder's different, their brainwaves are different. So we've tried probably up to eight or 10 now different companies and headsets. And usually we can find one type that works for one individual, but each one has its own glitches and challenges. And sometimes it's the electrodes, it's the comfort, it's the ... Some need gel, some need water,
Jen Lyman (00:49:12):
Some
Adam Kirton (00:49:12):
Are a cap that will stay on, others slide off, some are better signal. There's a whole list of ... That's probably near the top of our list that we're hoping us or some other really smart company is going to develop the perfect headset for kids with CP that knocks down all those barriers. Yeah, so that's a big challenge. That's
Jen Lyman (00:49:41):
Interesting.
Adam Kirton (00:49:42):
Expanding the clinical workforce, implementing it in the system, which I mentioned we're making progress, but it's hard to get that time and space. And so that means we have to keep earning research grants, which is it's self-time-consuming and competitive as you
Jen Lyman (00:49:56):
Know.
Adam Kirton (00:49:56):
And so there's always financial limitations.
Jen Lyman (00:50:01):
Yeah. Yeah. And I guess flip side, what are the surprises and successes that you've had?
Adam Kirton (00:50:09):
Yeah, lots. The individual ones are still the best that I don't often get to be there, but sometimes I'm there the first time when
(00:50:19):
Somebody makes something work and they see it and that you can see the look on the kids' face and the parents usually cry, and those are great, and I can't see that enough times. So each one of those is really great. And I guess what I mentioned earlier, the implementation, the ability of the system to already want to support this and bring it into the system so quick, so early is really an objective marker of that it's useful, that it's impactful. And so that happened much faster than we expected. The only downside of that is we ran out of budget for it. We tried to happen that quick, but that was a very pleasant surprise.
Jen Lyman (00:51:10):
And again, I feel like it's a good model for other programs. So people that you're working with that you know in other hospital systems, maybe some of these collaborators that might be wanting to do it, I feel like having this success that you've had, I guess in a socialized medicine system where you've got this buy-in, I could see it working in other systems and other- I think so. ... other administrations buying in, hopefully. You've got an example I'll take.
Adam Kirton (00:51:48):
That's right. In a system that doesn't have money to burn and it has to be economical within. And so we are generating that kind of health economics data that should make it easier for people to start programs in other places. Yeah.
Jen Lyman (00:52:02):
Yeah. And we just need to clone you and bring you around.
Adam Kirton (00:52:07):
Well, the program is we're trying to make it not a cut and paste, but the methods we have and the tools we use and that we've been sharing it with lots of different places so that they can- That's
Jen Lyman (00:52:19):
Wonderful. ...
Adam Kirton (00:52:20):
Try to start up their own programs. And yeah, I think that's how it'll grow.
Jen Lyman (00:52:27):
And that's really cool. And I guess that does lead to my next question, which is for those who are interested in this, for their loved one, their family members, how would they find this? How do they find you? And or are you able to take ... A lot of my audiences in the United States, I have a lot of Canadian friends that also listen to this podcast. I think one of them is actually in your study, but yeah, I'm just ... Where would families go? Because I know families want to know what to
Adam Kirton (00:53:00):
Do. The best way to get informed and what's going on, and full disclosure, the Possibility Neurotechnologies company I helped start. I don't make any money from it. And we started it in order to try to scale the technology. And so it's being run by one of my former grad students is now running the company. She just got back from Australia again because everybody wants-
Jen Lyman (00:53:26):
Australasian
Adam Kirton (00:53:27):
Conference company. ... start doing this? Yeah. Yep. And anyway, so PauseNeuro has this early adopter site,
(00:53:34):
And by signing up there, you get supposed to be, I think, monthly newsletter that just says what's going on in this world of pediatric BCI. And it's a way to get connected and see what's out there. That's the only way I have, or our program has to share actual technology is through the program. The related concept is for parents and families to advocate to say to your therapists or your doctors or the people who do assistive technology for your family, say, "Have you heard about BCI? And here, check out this site in. " They can go to our website and see everything we're doing. Do you think that would work for my child or are you interested in learning more? Or do you think you could convince the hospital to buy a BCI kit and
Jen Lyman (00:54:26):
Then
Adam Kirton (00:54:26):
You could learn how to use it together and we would volunteer to try. We've seen lots of that kind of uptake-
Jen Lyman (00:54:32):
Interesting. ...
Adam Kirton (00:54:32):
All over the world. And so parents advocating and maybe getting a clinical partner who knows your family and also works in the system and has expertise, I think that's a good strategy. The technology's not expensive. You can purchase the one system for a few thousand dollars. Some hospitals have budgets for that, clinics have budgets or maybe they just want to try it. So I think those are the best ways to get aware and get access as it emerges. Hopefully access will be constantly improving. And
Jen Lyman (00:55:09):
I guess the flip side to that question is what should families be watching out for? Are there any red flags in this community? I know with stem cells and other emerging cures or things like that for CP, there are some red flags and is
Adam Kirton (00:55:29):
There
Jen Lyman (00:55:30):
Anything in this world?
Adam Kirton (00:55:31):
Yeah. Well, this is totally safe, so there's no real risk. I tell the families, the only side effect here is disappointment. So if it doesn't work, that's really disappointing, but that's kind of the worst thing that can happen we think and have lots of experience now that in even the few times that that's happened, I think, as I mentioned, I think the opportunity to try is appreciated and then they know they're not missing something. And then you have to be careful about the hype, which you're appropriately pointing out. I think hopefully I've been clear that the way it is currently, simple things seem to be achievable for lots of people is that's the way I would summarize it. So no guarantees. And no, it's not going to let you turn your thoughts into words or do very complex things yet, but it has the potential to do simple new ways to participate.
(00:56:34):
So I think leveling the expectations with the reality of what it can and can't do, hopefully that's going to keep improving. But I think as long as there's that sort of clear messaging, I think that's a fair representation.
Jen Lyman (00:56:54):
Yeah. Michael J. Fox has a quote that I always like to use. It's hope is informed optimism and it's exactly this in that case. And I guess that leads me to my last question of you. What is your hope for the future with this technology?
Adam Kirton (00:57:13):
Yeah, we have a few, myself and my team have a few medium to long-term goals. We're just putting in a proposal for five years. And the two big ones are, I think at the two ends of the spectrum, we'd like to see at least simple access for every family everywhere, so the simple version of BCI that can do meaningful things without too much cost and complexity, like to see that scale so that anybody can try it, get their hands on it, try it, see what it can do. And we've touched on some of the ways that might be happening. And then the other end is the moonshot for really high performance type BCI, which we think will come in the future is to accelerate that and to bring young people with cerebral palsy and related conditions into that world so that we think it's about five years to see a young person with CP get an implantable type of BCI.
Jen Lyman (00:58:16):
That's really helpful to know. Yeah.
Adam Kirton (00:58:18):
Yeah, we're just about to publish a paper about that, and that's the kind of timeline. So those are the two big goals I think of our program and the people we work with in this space most, I think would agree that those are two goals worth pursuing.
Jen Lyman (00:58:34):
Yeah. Amazing. And as one of those parents who ... I'm convinced you've definitely tamed my skepticism. Okay,
Adam Kirton (00:58:44):
Good.
Jen Lyman (00:58:49):
You've got me thinking that it's something we definitely need to try, which is really exciting. And I really appreciate that. And I truly, I know my listeners as well appreciate the work that you're doing and I know that I'll be in touch. CPF is certainly looking forward to working with you more to help scale this as well and get the research out there. I know that for this podcast, I'll also include your website. I'll include the link to the ... Is it Possibility Neuro?
Adam Kirton (00:59:28):
Yeah.
Jen Lyman (00:59:29):
Yeah. And I'll include that link as well for families to be able to sign up and any research papers that you think would be good, I'll also include so that families can learn more and learn more about what you're doing.
Adam Kirton (00:59:45):
Yeah, there should be links to those and references on our website, but-
Jen Lyman (00:59:49):
Wonderful. Wonderful. Well, thank you. Thank you. Thank you so much for your time. You're
Adam Kirton (00:59:54):
Welcome.
Jen Lyman (00:59:55):
Yeah. This has been really exciting learning about this. And I I'm hopeful for the future. Thank you.
Adam Kirton (01:00:02):
Great. You too. Thanks for having me.
Jen Lyman (01:00:06):
Thanks for listening to the Cerebral Palsy Health Podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram. You'll find the links in this show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at jblyman@mac, that's M-A-C.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast and/or any other medical concerns with their personal medical team.