| James (0:10) | This is another of the podcasts from the HealthTap Research Centre in Brain and Spinal Injury. I'm really pleased to be joined by Theo Farley and Aaron Chung-Yuko, and we're going to be talking about concussion. Theo, perhaps you can start off by just telling us what is concussion? What do we mean by that word? |
|
| Theo (0:28) | That's a very good question, James. I think, depending on who you listen to, who you read, it does tend to mean slightly different things.But ultimately, the consensus guidelines tell us that concussion is more of a kind of an umbrella term used to describe a collection of symptoms or dysfunction within the brain. So that's kind of heightened metabolic rate within the brain, changes in neuronal and axonal connectivity, and then crucially, kind of, autonomic nerves and dysfunction that regulates cerebral blood flow, particularly. So at rest, we don't tend to get enough cerebral blood flow, which leads to a dearth of energy.
And during exertion or exercise, we get too much cerebral blood flow, and that leads to kind of exercise-induced symptoms, which people will no doubt be very familiar with. |
|
| James(1:16) | Okay, so is it always as a result of a blow to the head? | |
| Theo(1:20) | Absolutely not, no. I mean, obviously, with a concussion, there's generally a traumatic incident, but it's certainly been more of a whiplash-type injury. So if you take, you know, so I had someone today in clinic who fell onto their side, and they didn't hit their head, but they had that kind of whiplash mechanism. Or if you imagine a rugby player being tackled in the torso, and then they suddenly decelerate, and that leads to a kind of whiplash, even in obviously a car accident would be the most obvious example that people can probably relate to. |
|
| James(1:52) | Okay, so there's ways of sort of measuring and defining someone's had a concussion. But if I'm, you know, on the rugby pitch, and I bang my head, or I get that whiplash thing, how will I know that I've had a concussion? Will I experience some sort of obvious physical symptoms? Do I need to go to hospital? |
|
| Theo(2:08) | Well, there are different kind of signs of concussion, and you can have immediate on-field concussions, which obviously could be loss of consciousness, but you certainly don't have to have loss of consciousness for it to be a concussion. Now things like what's called tonic posturing, which is splinting of the limbs or torso, dizziness, feeling aggressive or disorientated.So those are kind of more obvious ones, and it's easier to diagnose. But ultimately, symptoms can present any time from the initial incidents to 40 hours later. So that's what makes it very tricky sometimes to diagnose. | |
| James(2:39) | And I guess then some people who have had a concussion might not go to hospital. If they do, they might go a bit later. And I guess in some cases, you might go to hospital and they just say, see you later, because there's nothing on the scan to show that you've had a brain injury. | |
| Theo(2:53) | Yeah, I mean, unfortunately, that is generally what happens to everybody. You know, A&E is at the moment, at least, there to make sure no one's got something that's going to be fatal. And then it's really generally a pat on the back, good luck, kind of, you'll probably get better in two to three weeks.But we know from the research and the data that 49% of people still have symptoms after six months from a concussion. And that's ultimately why Aaron and I got together to build HEADY. | |
| James (3:21) | Yeah. And Aaron, so let's come to you. So you're involved in this project because you had a concussion. Is that right? |
|
| Aaron (3:28) | Yeah. Yeah. So I was mountain biking in the Lake District.I didn't have a, I didn't lose my consciousness, but I don't remember what happened. And so as Theo said, you don't need to lose your consciousness. And you basically scanned me.
They checked that I wasn't having a brain bleed or dying in another way, and then gave me an A4 sheet that says, you vomit twice, or if you have these symptoms, if you have a seizure, come back. Otherwise, unfortunately, not a problem type of thing. So I found out online that basically help is available, but then it's expensive in the form of seeing somebody like Theo, which I was very lucky to have private insurance and saw Theo and realised that what he's doing in terms of the testing, in terms of the rehab could actually be brought to more people if we digitise it. And so, yeah, he was actually helping me with my neck and giving me manual therapy while I was just pitching him ideas and then convince him to do something together. And here we are with an i4ii grant. |
|
| James (4:31) | Yeah. So I wanted to get you two on because you've just received this funding award to kind of push this project forwards. And I guess that's really trying to use technology to support people through their recovery.So is it about sort of tracking progress after concussion? Is it looking for warning signs to send people back? What's the main focus? Theo perhaps you can pick that one up. | |
| Theo(4:54) | Sure. So we're really the couch to 5K for concussion management.So, you know, our ultimate goal is for people to have access to HEADY after they get discharged from A&E. From that, they have all of the safety checks that they need to replace the A4 sheet of paper and then some. So we give them a lot of advice on what to do in the initial phases of their concussion, which can be some of the most crucial stages, a lot of education around what it is and just kind of hopefully to relax people and just inform them that what they're experiencing is very normal and what they can expect going forward.
And then if people then need that kind of further intervention, we test all of the systems that cause concussion. So the autonomic nervous system, we do the vestibular and oculomotor testing, which is part of your balance system, and then the neck testing, which can often give or normally does give headaches and other symptoms. And from the results that we get from those tests that we're prescribing, we can then give the relevant rehab and help people with not only the rehab, but also the kind of graded return to activity, whether that be school, work, sport. So really, we've picked them up in an initial acute setting and then can get them all the way through to the recovery, which can be very difficult when you don't know what you're doing. If as a patient, there's not much guidance or kind of expertise out there. So we really kind of hope to be that resource to treat people's concussion and really make a difference with that. |
|
| James(6:20) | Yes, that sounds great. So Aaron, you had this sort of A4 sheet. What sort of problems did you have? Did you struggle to get back to normal function after your concussion and the sheet sort of said, look out for this? Well, I didn't have that, but I'm not right. What was your experience like? |
|
| Aaron (6:37) | To be honest, the sheet didn't have much. I've now noticed that some A&Es have a bit more on their sheets, but really, I just struggled with headaches every time I tried to concentrate, go on the bus, go on a tube, have a conversation, be in a loud cafe. So that's actually, you can tell just there is motion sensitivity, noise sensitivity, and then on top, insomnia, difficulty concentrating.So the list just goes on and on and on. And it's only when something, even one of the worst symptoms die down a bit, then you realise, oh, actually, I've also been suffering from one of the other symptoms. And you realise how much you've been going through.
And I think one big part of it is also actually the, frankly, the social isolation, because you don't feel understood. I think maybe this has come into brain injuries as well, where you look normal, people can't see what's wrong with you. And so you don't get a sense that people understand you. And so a big part as well of what we're doing in HEADY is showing patients that help is available, empowering them to have the tools, but also then educating their family and friends of where they are at, when they might recover, and help them in also feeling affirmed in that they're not imagining things, it's real, it's there and be just a support for them. |
|
| James (7:58) | Yeah, it sounds really useful. I'm sometimes quite glad that I wear an eye patch, because then people can see there's something wrong with me, right? And maybe it's actually it's my brain injury that's making me really tired and slur my speech, but you can see that.And for many people, I guess after these concussive events, there probably won't be any signs at all, you might not have any scars or anything like that you've had this sort of whiplash, invisible injury, but for some people really long term impacts from that. | |
| Aaron (8:25) | Yeah, the stats, as Theo already mentioned, it's like, you know, 47% have symptoms beyond six months, and people think, oh, you get off the rugby pitch, and then you're back on in two weeks. And in fact, that's that's probably the fastest you can you should ever be going back. It's the sort of cap rather than the norm. Yeah. |
|
| James (8:43) | Theo, you described sort of some of the tests, is this HEADY, something that people just keep for themselves and look after themselves? Or is it something they work with somebody like you on in clinic? | |
| Theo(8:52) | So you can do both really. So you can use it as. Because not everybody has access to someone in clinic, whether that be geographical, financial, or just, you know, access through the NHS, you know, by the time you maybe get an NHS appointment, you're already two or three months on the line. And there's a lot of kind of what you could have been doing in the meantime. So initially, we designed HEADY to be an autonomous kind of tool for people to help themselves, rehab themselves.And we do obviously recommend that you do the tests with a responsible adult. There's, you know, a lot of safety checks all the way throughout. But ultimately, they can take take HEADY and rehab themselves based on the best evidence based on the gold standard treatment and based on the factual kind of results that they've gained from their own testing. |
|
| James (9:38) | And what is recovery trajectory like if people get that right sort of rehabilitation, those right kind of therapies? Are most people better within a year or two? Or will it last longer than that, even with good support? | |
| Theo(9:51) | Well, I mean, there's the adage is if you've seen one concussion, you've seen one concussion, because everybody's so different. But you know, what we do know is if you do the right things, there's no reason that you should be last, you know, suffering with symptoms in the years, you know, if you do the right things, we'd hope that everybody would get better within, you know, two to three months, really. So it doesn't have to be an ongoing thing.But the reason that people often come to see me, you know, four or five years down the line is because they've never had this intervention. They haven't had the guidance or the advice or the testing or the treatment. And when you actually empower someone to do these things, not only does it help their physical, but their mental is just, you know, you can see they're walking taller when they leave the clinic room, just because they've now got some empowerment, they've got some some guidance and a plan for their recovery. | |
| James(10:36) | So yeah, I guess part of that is just somebody recognising that, yes, there is something amiss here, right? And we can do something to help you. | |
| Theo(10:45) | Yeah, absolutely. Because I think, you know, as Aaron said, it is in a lot of cases, especially for concussion and invisible injury, because you essentially look quite normal. So people start to think, you know, they start to doubt themselves. And people doubt them.And they even see medical professionals who say concussion doesn't exist. Some people say, oh, it's mostly in your head now. And there is a physiological process going on.And it's not just lying in a dark room. I had someone recently who was told to sit on their bed and look at a blank wall for two weeks, which is what they actually did. And they were given that advice in A&E.And they were 10 times worse at the end of it. So something like headache, they just don't get that kind of misadvice. And they just get going from day one. |
|
| James(11:29) | You can just imagine the sort of psychological impact of sitting on your own and not doing anything about the problems. It's not going to help anything, is it? | |
| Theo(11:33) | No, I mean, social isolation is extreme, or can be extreme.And, you know, some people struggle to leave the house or then go to work or socialise with friends. So that's one of the biggest things. And the mental health side of having a concussion is something that we obviously need to take really seriously.
And it's something that we do within HEADY. We have a lot of triggers for connecting with other healthcare professionals, GPs, etc. If someone's mental health status does seem to be going in the wrong direction, so something we're really, really conscious of. |
|
| Aaron (12:05 ) | One of the things that I really struggled with, as well after my concussion is that, as I said, I had difficulty concentrating and that would bring on symptoms. But I really wanted to prove to my PhD supervisor that I can still do my PhD and I shouldn't be fired, basically. You know, I tried to still go to do my research and I tried to work hard.But really, what Theo later told me is that you shouldn't be yo-yoing in terms of your activity levels. So a lot of people, they do a lot in one day and then the next day they have other symptoms. And this is part of the complication is that you don't always just feel it at that moment.
And so the next day they just sleep at home, they do nothing. And then the next day, the day after that, they're like, okay, I'm good again. And then they go again. And so that really delays the recovery. So that's why a lot of HEADY we pack in a lot of stuff, not just notifications, trying to keep people on track. We would tell them, okay, today, maybe you should do three and a half hours of work and not too much more, maybe 15 minutes more. Tomorrow, maybe you can go to, you know, add 15 minutes. And so we try to pace them and also see the progress. And we also have our brain battery algorithm, based on their symptoms and activity levels to try to track that and try to give them that 24-7 feedback of, okay, last night you didn't sleep very well. |
|
| James (13:44) | Yeah. And I guess it can go both ways.There'll be people who just push themselves too hard and there'll be other people who just can't be bothered and don't do enough work. And having that sort of prompting and reminding and that pattern of behaviour and exercise, hopefully will keep people on track. | |
| Theo(14:01) | Absolutely. Because as you rightly say, you know, some people don't leave their room afterwards. And actually that reinforces the problem. It makes all those systems that become dysfunctional.And then they get, some people get to the point where they're struggling to walk around the block outside the house. So HEADY will help to bring those people back to full function through progressive increases in activity. And then conversely with people that may be doing a bit too much, might just kind of pull the reins a little bit and give them some better guidance on how they can stop this kind of yo-yo boom bust cycle of activity levels.Because without doing that, you just can't, can't really move forward. It's very difficult. |
|
| James(14:40) | Yeah. Keep that sort of consistency of stuff going through. And I guess, you kind of mentioned that around about being able to track the progress, right? If you can see that you're getting better and you're making improvement, it gives you a real psychological boost to keep at it because it's a long journey for many people. |
|
| Aaron (14:55) | Absolutely. Absolutely. And it's just getting a sense of where you're going and that it's working and you're getting better and you can't really feel a 15 minute change day to day.But then when you see, oh, in the past week I've actually gained this much more function. I can work one more hour per day now. That's a big difference.
And eventually you can see when you're going to get better. |
|
| James (15:18) | Is HEADY recording and capturing information. And is that shared? Can you share that stuff with doctors and therapists and people that you're working with? | |
| Theo(15:26) | Yeah. So it's really data rich and obviously with permissions from the, from the user, the patients, they can then share that with whoever they wish to, whether that be a GP, a neurologist, their family or friends or a sports coach, et cetera. So, you know, they can link in with whoever they feel is, is that, you know, their key stakeholders, their recovery journey.So, you know, and that connects healthcare professionals, medical teams, all sorts. So your GP, for example, who says, you know, what's been happening in the last six months, a year, three months, whatever it is, they've got all that information, their fingertips, if they've been connected through the app. | |
| Aaron (16:04) | And just to add to that, because we have actually 24 -7 access to the patient, which actually the clinicians can only dream of, then there was so much more data. And we can also try to improve upon the current best clinical evidence, because basically we can use the data with the patient consent to keep improving upon the algorithms. So for example, one thing that I found out was that, for example, ADHD, somebody like me, person would suffer a lot more from a concussion.They would struggle a lot more with recovery. So we can personalise them for the patient and also find out, okay, how much slower should we actually have the ADHD patient and actually have data back that up in the long term. | |
| James (16:45) | Really valuable. Yeah. And we're moving towards this sort of more personalised medicine generally, aren't we?So it's great to see technology sort of moving that way. So Aaron, what's next? How far developed is HEADY usable at the moment? And what are the sort of next steps, I guess, testing and seeing how well it works? |
|
| Aaron (17:03) | HEADY is not released yet. It is nearly, nearly there. We're just going through the last phases of development, but also of testing.And then we will be a class one medical device so that we can basically let the public use it. And having gone through all the safety checks and all the, all the other risk assessments, etc. So we will have our clinical trial launching in late autumn.
And at the same time, we'll be hoping to get much more of the patients and public involved in the meantime. So do give us a shout if it sounds exciting, or it's something that you think you would benefit from. We're going to update our website very soon to put out the waitlist for signing up. Use the app. |
|
| James (17:49) | Grand, I'll put a link to the website underneath the podcast and people can find that. Check in. If it's not ready yet, go back and have a look at it a little bit later.So how big is this clinical trial going to be? Is it just a small number of people just kind of check that the thing can't cause any harm and it's working properly? Or are you thinking a few hundred people to really see how well this can deliver? | |
| Theo(18:09) | So stage one trial will be a pilot trial. So we're not going to have hundreds of people in this. It's more of a let's debug the process and make sure that people are able to use it and happy with it and compare it against potentially another intervention to get some information around its efficacy and effectiveness.But we're really confident that we're providing something that's actually going to be better than a clinician, someone like myself, because as Aaron said, it's going to be 24 hours in your pocket, giving you guidance, advice, reassurance and helping you to eventually through machine learning to be able to progress your activity levels in line with not just best practise, but in line with actually your best rhythms.
So we're really excited for all of that. |
|
| James(18;57) | Yeah. And get that sort of that personalisation again.And I guess finding the comparator might be quite tricky because as Aaron said at the start, many people don't see anybody or it takes ages before they actually get any kind of treatment at all. So I guess you need to think quite carefully about what you're testing this thing against, because it's going to do better than nothing, but then a lot of people don't get anything. | |
| Theo(19;17) | Yeah, well, we're going to have we're going to have two arms of the study. So one will be HEADY and one will be another intervention that can be prescribed. So we have a direct comparison of what's going on with those two groups. |
|
| James(19:30) | So when would we expect to see results of that? Is it going to be a year or two years time? | |
| Theo(19:35) | It should be as early as next spring. So we'll be building upon that data from then on and just continue to release new data as we kind of go through the next stage of trials.But it'll be available to use and treat people before then. So as I said, we're using all the best the best practise guidelines for it. So the fact that it's in a digital format shouldn't make too much difference, or it should actually enhance the quality of care that people are getting and certainly will increase the reach as well. | |
| James (20:08) | So is this HEADY? Is it going to be something that you can just log on and do yourself or is it going to be something that's actually prescribed by a doctor? | |
| Theo (20:17) | So there's no need for a direct prescription as long as you've had a diagnosis of a concussion.That's the important bit. And you can self access the app and certify that you have been diagnosed and then you can you'll be able to download directly from the App Store or Google Play. Or if your organisation has a licence to HEADY, you'll be able to access it through that route as well.
And I guess, though, it has more value if the clinicians know that you're using it and we can get that data sharing thing that we talked about. |
|
| Aaron (20:47) | Yes. So the idea would absolutely be that we share with the whole clinical team as well as actually at schools or coaches, sport coaches, teachers, family. So the more people that are involved and understanding of where the patient is in terms of their recovery, then the more accommodating everybody else can be as well. | |
| James (21:07) | Grand.
Well, it's fascinating to hear about HEADY. Good luck with the trial. I look forward to kind of hearing results and hoping that it's going to help out a lot of people. We know that far too many people have some kind of head injury and they don't really get any kind of support and treatment. So thanks so much for giving me your time and speaking on the podcast. And if you would like to hear more stories around brain injury, please check out the rest of the episodes in this series, where I'm talking to patients and doctors and researchers about new innovations and technology in brain injury. |
