Bowel Moments
Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.
Bowel Moments
Meet Dr. Charlie Lees!
Discover the cutting-edge world of inflammatory bowel disease (IBD) research and management with Dr. Charlie Lees, a leading gastroenterologist and professor at the University of Edinburgh. In this episode, Dr. Lees guides us through his groundbreaking initiatives, including the Atomic IBD series and the insightful PREDICT study. Learn how innovative predictive health tools, such as sweat sensors, are shaping the future of IBD care and how the series has become a beacon of hope and knowledge for both patients and professionals.
Dr. Lees provides a deep dive into the findings from his PREdiCCT study, including finding on how mental health testing and diet may help indicate a possible flare. He also sheds light on the role of calprotectin levels in indicating inflammation and how patients can understand these levels and how to use them to track their health. This episode also emphasizes the importance of holistic patient care by addressing psychological factors like depression and inactivity, offering actionable strategies to enhance patient well-being.
Explore technological advancements in non-invasive health monitoring, from wearable tech to smart toilets, and their potential in revolutionizing IBD management. Dr. Lees also shares insights on the successful adoption of biosimilars across Europe, highlighting their cost-effectiveness and efficacy in improving patient outcomes. This episode is a must-listen for anyone interested in the future of sustainable healthcare, as it advocates for clear communication and collaboration between healthcare providers and patients to harness the full potential of these innovations globally.
Links:
- Dr. Lees' Substack
- Dr. Lees' YouTube Channel
- Dr. Lees' patient video on Fecal Calprotectin
- Dr. Lees' video on biosimilars
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Hi, I'm Alicia and I'm Robin and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD Serve on the rocks. This week we talked to Dr Charlie Lees. Dr Lees is a professor of gastroenterology at the University of Edinburgh and a consultant gastroenterologist at the Western General Hospital Inspire Shawfare Park Hospitals in Edinburgh.
Speaker 1:Dr Lees has a passion for inflammatory bowel disease education, both patient and professional, and this led him to develop his very informative and popular sub-stack and YouTube series called Atomic IBD.
Speaker 1:We talked to him about how he chooses the topics for this series and the response that he's gotten. We also talked to him about some of the videos that he created, including a really informative one on fecal calprotectin that helps patients understand how this indicates inflammation that may be happening within their gut. We talked to him about his PREDICT study that looked at a large population of people living with inflammatory bowel disease in Scotland that aimed to discover the causes of disease flares. We talked to him about predictive health tools, including sweat sensors and other wearables and or things that you may be able to use that would be able to help indicate your health without any invasive procedures. And finally, we talked to him about biosimilars and how widely and long they've been used in Europe and how that may be helpful for people living with inflammatory bowel disease here in the United States. That may be moved to a biosimilar Cheers.
Speaker 2:Hi everybody, Welcome to Bowel Moments. This is.
Speaker 1:Robin. Hey guys, this is Alicia and we are so, so excited to be joined by Dr Charlie Lees. Dr Lees, welcome to the show.
Speaker 3:Oh, hello, hi both, thanks for having me along.
Speaker 1:Well, we are so excited for everybody to get to know you and to get to know your story, but our first very unprofessional question for you is what are you drinking?
Speaker 3:Well, it's currently just after 5pm here in Edinburgh and I've just finished clinic, so I have made myself a mug of tea, and there was only a single tea bag left in my closet, so it's actually a moment of calm herbal tea. So there we are. That seems like an appropriate way for the day, nothing too hard.
Speaker 1:I do feel like that. That is perhaps the universe giving you a little bit of a gift there.
Speaker 3:Yeah, right, okay, we'll go with that.
Speaker 1:That sounds good, Robin. What about you?
Speaker 2:I am on my sparkling water kick. I am drinking Topo Chico. Shout out to Topo Chico with lime and mint With ice.
Speaker 3:No, it's just a Right from the can. That's hard water, just a break from the can.
Speaker 1:That's hard water. Yes, well, it's still sort of morning for us here, and so I'm still drinking my latte, and it's my first latte of the day, which is never a good sign, at 11, 17 in the morning, for me to be on my first one. It means I've been on too many meetings, so hopefully I'll get to my second one soon. But, dr Lise, we are so, so excited for everybody to get to know you and for us to get to know you more as well, so I'm going to jump. Oh wait, no, cheers everybody. Sorry, apologies, we cheers now Cheers Again. Dr Lise, we are so excited to get to know you and for everybody to get to know you as well. That has not already become familiar with you, because I think they probably have.
Speaker 3:But so I'm going to jump straight to our second question what is your IBD story? What brought you into our community? So I'm a gastroenterologist, so I look after people living with IBD, and my IBD journey goes back to August of 2003. So we're a little over 20 years now. I'm from London originally. I went to medical school in London.
Speaker 3:I came up to Edinburgh in 2001 to do my medical rotation as a junior doctor then and do my membership exams for the Royal College of Physicians, and then I started working as a research fellow in gastroenterology in the Edinburgh IBD unit, where I have been ever since in August 2003. And so I've been here ever since doing research, looking after patients, learning my craft as a clinician from everybody here and then moving along the way via completing my training to a clinical lectureship, to completing my PhD in the genetics of inflammatory bowel disease, and then moving all the way to 10 plus years as a full-time consultant gastroenterologist, building a very busy clinic full of IBD patients. In fact, I think I set up the first dedicated IBD clinic in Scotland, if not one of the first in the UK, where there was no other gastro patients. It was purely IBD, which I maintained to now, and then in the end of 2019, I wanted to do more of the research that I was already doing, and so at that point I was awarded a big personal fellowship a UK Research and Innovation Future Leaders Fellowship and that enabled me to transition to a more full-time academic role to become a professor of gastroenterology at the University of Edinburgh. So I run my research group here, whilst maintaining my busy IBD clinic and scoping practice, and at the same time, do a lot of outreach and communication work, trying to educate people, with really the key goal overall, which is to improve the lives of people living with inflammatory bowel disease wherever they live in the world, and to me, the sort of global part of this is a huge, hugely important part of that, and so I've gone from learning the craft and learning the needs of our patients to doing a lot of research in genetics and treatment and, more recently, in environment and the microbiota, as well as increasingly into using digital tools, and the overriding thrust of my research group is in terms of predicting outcomes using a variety of different measures in people with established IBD. So that's sort of the brief overarching thing.
Speaker 3:I've been working in the IBD space now for just over 20 years, and that's a really very interesting timeframe to see very big shift. From the early days when, you know, I was literally taught that our patients with Crohn's disease had to earn their right onto a biologic, we would save our best drugs to the last, we had no idea how to use them properly, really how to manage patients in any kind of target-driven way. The targets that we had then were fairly meaningless and actually that was probably not a problem because we didn't really have drugs that could achieve meaningful targets anyway. And I've lived and breathed through the introduction and implementation of not just a series of highly effective therapies that have become very affordable, but also treatment strategies and modes to enable us to improve outcomes Such that, as we start 2025, I am very optimistic that for the vast majority of newly diagnosed people with inflammatory bowel disease, be it Crohn's disease or osteocolitis, the vast, vast, vast majority can expect to have, with treatment, for the most part, deep, prolonged and sustained remission that modifies the natural history of the disease, so they're not getting the complications that we see otherwise.
Speaker 3:That's not quite there yet with all those bits, and the reality is that actually most of our patients are the prevalent patients who've lived with IBD for many, many years and accumulated lots of damage over time.
Speaker 3:But for the most part, I'm in a much more optimistic place than I was 20 years ago and, with the work that we're doing and my finger across the pulse of what's happening in terms of research globally, across clinicians, academia and industry, where we really have great interest and attention, the next five, 10 years they're going to see really tremendous advances.
Speaker 3:So it's a very, very interesting space and there's a whole number of those different things that we can pick up. But to come back to your question, what's my journey? Well, my journey is just that IBD is what I live and breathe and I do that now in Edinburgh as a clinician, as an academic, as professor of gastroenterology, looking after patients. As a clinician, as an academic, as professor of gastroenterology, looking after patients, doing research that is directed all towards improving outcomes for people living with IBD and, along the way, really passionate about educating the whole community about how we can do things better. Because if all we do is implement what we know works now more across the field, across the whole of Scotland, the whole of the UK, across the whole of America, across the whole of the world, then the standards for every IBD patient across the world goes up dramatically. And if we can improve things from the ground up and get things even better, fantastic.
Speaker 1:That is a very hopeful way of starting this, so thank you for that, because I know sometimes this doesn't always feel like a hopeful disease. I am curious how did you choose IBD to be the source of your passion? Is there a personal connection, or what was it that brought you into this specific community?
Speaker 3:early on. My father was professor of radiology at the Middlesex Hospital University College London and heavily involved with gastrointestinal imaging and interventional imaging and that I'm sure had an influence as well as inspirational teachers when I was a medical student in London. So I knew that I wanted to be a gastroenterologist from halfway through medical school and then, when it came to the time after my membership to start doing some research and moving forward within that journey, the best opportunity that was available was in the IBD space and that's where I've been and no regrets since I've not diverted across otherwise, but I've kept all those interests aligned from the start, from a young age in my career. So, yeah, some inspiration and serendipity and then great mentors and inspiration along the way.
Speaker 1:Yeah, we hear that from a lot of our healthcare providers that if it wasn't a personal connection, that it was somebody that they had encountered along the way in their you know, in their training journey, that really kind of got them to be particularly invested in the inflammatory bowel disease community and inflammatory bowel disease, what was it that drove you to invest more of your time and resources into research at that particular time? Because you'd already built your clinic and then so what was it that suddenly made you go? You know what? I need to spend more time in the research side.
Speaker 3:So this now is the pivot I made six, seven, eight years ago and really what had been happening was that we'd been doing a lot of big collaborative research products in the genetics field, which has been hugely successful in IBD. I mean just briefly we've now mapped out over 650 regions of the genome that we know are associated with IBD susceptibility. These overlap massively with our current drug targets. Gives us great hope that you know the future drugs that will work even better for IBD are in a lot of the rest of that. We understand the biology of the disease much better as a result and certainly the molecular architecture of Crohn's disease and ulcerative colitis really well. But I was moving in a slightly different direction from about 2013. So I'd already been a full-time consultant three, four years at this point.
Speaker 3:I was heavily involved in ECHO from 2007, 2008. This is the European Crohn's and Colitis Organization. I went into there as a junior member of the EDUCOM, the Educational Committee. I spent many years on EDUCOM. I totally revamped and ran for years the course for young gastroenterologists where we taught them the nuts and bolts of IBD. That became the really. It was really the sort of centerpiece, the flagship of echo education and then into scientific committee for a while. But at the end of my tenure at Educom I went with in fact, with Simon Travis from Oxford and Janneke van der Voelde, at the very start of 2013 to China and we went and we ran the first proper collaborative educational program over four days between the China Internal Medical Foundation and with ECHO and I'd done a lot of travel and teaching and already developed a passion for that at that point. But that trip back then it wasn't seen that long ago, but actually in the context of epidemiology of IBD and the environment of IBD and our learnings of that, it's quite a long time ago and it really opened my mind to the shifting environment, the dynamic nature of what was happening with IBD epidemiology where we've
Speaker 3:seen this massive increase in Western populations a few decades ago. That stabilized over the last 20, 30, 40 years. The incidence levels are stable. We're seeing more and more patients because of compounding prevalence, but the incidence of IBD across North America, across Europe, is stable, but in the Far East, in South America, latin America, the Middle East and now in Africa, ibd has been emerging and then accelerating, and going to China in 2013 was the start of that acceleration in incidents and you could see it everywhere you went.
Speaker 3:I was in Guangzhou, the slightly strange Chinese city which was modernizing in front of your eyes. I literally remember going and seeing on the one side, the old market with, you know, people bringing back fresh produce from the field, and over the other side of the road, the McDonald's that had been open a month, the Pizza Hut next door and these multiple other chains. And you would go to the buffet in the morning for breakfast and you would see, you know, this constellation of traditional dishes and then you know this increasingly large Western buffet and you would see the older chinese people eating traditional and the younger people eating the western food and all the rest of it. I was thinking, well, hang on, there's something. This isn't just genetics, there's something different going on here, there's something explaining all of this. So that really stimulated me to start thinking beyond just genetics, to think about the environment, the impact of diet and other environmental factors on the microbiome and how that might take place.
Speaker 3:And so, having got involved with a couple of big collaborative international projects, I then set up from about 2015 and 2016, the end of that year and we started our big PREDICT study where what we were doing was trying to look, not necessarily the cause of IBD, because that's a really really difficult thing to look at and we didn't have very much money but to try and look at later on how genetics, environment and the microbiota was influencing disease flare. So we posited that actually if you took patients who were in remission, where there was less interference from inflammation in the gut, that you could maybe get a cleaner signal, looking at dietary patterns and other lifestyle and psychological factors and their influence on the microbiome and then to see how that would influence disease course over time. And so from that point, my interest has been in really, how do you predict disease course? And in this particular study it was predicting disease flare, and I'll come back and tell you a bit more about predict in a minute, but just to finish your question.
Speaker 3:So what was then happening was that we were recruiting all these patients, that we recruited two and a half thousand patients across the UK on the Antipredict, and it was evident to me that the research that I was wanting to do and to continue to do was demanding more of my time and energy than I was able to give if I was going to continue to be so full-time in the clinic as I was. And the opportunity through this UK Research and Innovation Future Leaders Fellowship, which was running over eight years, gave me to pivot and free up some of my time whilst maintaining my IBD clinic, but to free up some of my time from doing some of my other gastroenterology clinical commitments would enable me to help more patients in a more meaningful way than I was doing before.
Speaker 1:That makes a lot of sense and, yeah, I think it's understanding those pieces of it also, just, you know, helps the community at large and is going to make you a better provider as well. So there's certainly that. But, yeah, I would love for you to tell us more about your predict study and what exactly you were looking at and then what were your findings, because that's a very that's a big number of people and my understanding is they were all in clinical remission or no? Tell me, I did.
Speaker 3:We recruited people in self-reported clinical remission to make the findings as generalizable as possible and then we would follow them to Flair and so we recruited 2,629 patients. In fact, we were planning to go over 3,000, but we got to March 2020 and we all know what happens in the world then. But we got to March 2020, and we all know what happens in the world then and we, like all research studies, had to close for a period and actually we decided at that point to stop recruitment and to focus on the follow-up and most of those patients. We followed all those patients for two years through monthly or semi-regular patient questionnaires that they filled in online, but we did a detailed post-doc phenotyping from the electronic medical record of patients at the end of the four years of follow-up. Actually, so, 2,500 patients with four years of follow-up.
Speaker 3:Interestingly and perhaps not unsurprisingly, because we know as clinicians and we tell our patients this that one of the huge challenges we have monitoring is this disconnect between inflammation and symptoms. So, on the one hand, you can be a person living with Crohn's or you see and feel well, but you have a lot of inflammation in the gut and we know that we need to find that and treat it, because it's inflammation that's the damaging signal moving forwards. But on the other hand, we can have people that have a lot of symptoms but not any inflammation, and there's a number of different reasons for that, from structural damage, from strictures, to irritable bowel syndrome, to bile acid malabsorption, to small intestinal bacterial overgrowth, to name just a few things. But in those cases, what you don't want to do is necessarily increase the anti-inflammation medicine, which all of our IBD meds basically are. So we found that roughly one in five people just under one in five people had meaningful levels of inflammation measured by calprotectin at a level of greater than 250 micrograms per gram. And we might come back to calprotectin because it's something that we've been doing in Europe much longer than in America and in fact in Edinburgh we've been doing in routine clinical practice very regularly for 15 years. So we have a very, very powerful data set there, and actually my team of data scientists now are doing some very cool work modeling inflammatory patterns over time in our routine collected data from the clinic as well as in our big predict study.
Speaker 3:But what it's enabled us to do, what calprotectin does enable us to do is to see gut inflammation on a poo test that you won't detect on a blood test and that saves the need for an invasive procedure like a colonoscopy or an MRI scan or a CT scan or intestinal ultrasound, for example. So all of the patients at entry into PREDICT were in clinical remission, self-reported, but had calprotectin tests where we saw that one in five had calprotectin levels that were higher than the baseline. And then there's another number that had a very low grumbling level and then the majority that had no inflammation at all. We also looked at stool samples to do a microbiome analysis through metagenomic sequencing. We looked at a very detailed dietary survey done by both self-reported food frequency questionnaires based on recall and a four-day weighed food diary, and then a suite of psychological questionnaires looking at sleep, exercise, anxiety and depression, somatization, compliance, as well as the standard clinical variables that you extract from the EHR. So we found that about 18% of the patients had a high calprotectin.
Speaker 3:We followed all of the patients until disease flare. We looked at both self-reported flares, symptomatic flares, as well as harder flares, where we saw both inflammation rise and a change in treatment, and what we found is very interesting. So we can see the predictive nature of calprotectin. We can see how inflammation drives those sort of harder flares over time, and we can get some very granular data from the study about how intermediate levels of inflammation are damaging over time, which is useful information for clinicians in terms of how much is the target, what's the target? How low do you drive the inflammation over time?
Speaker 3:And then, really interestingly, we've been looking at things like diet and psychological variables and some of the key things that we found actually diet's been really interesting, slightly surprising and in a way a little bit disappointing, because we thought we were going to find loads of interesting things and actually most of the dietary analyses didn't show anything, which is interesting because it suggests that diet's probably important. We think it's very important for general health, certainly, and there's lots of good reasons to promote good dietary health. But in terms of causing disease flares in patients with established IBD, we didn't see very much. The main signal we saw was, in patients with ulcerative colitis, an increased risk of flare with increased meat intake compared to not, and it looked like increased red meat intake was increasing the risk of hard flares in ulcerative colitis. Interestingly, we didn't see a signal with ultra-processed foods that we thought we might. And we've gone back and we've checked it, double-checked it, analyzed it in three different ways, because we were convinced there must be something in Crohn's patients but actually in our data set there isn't. That may be because patients in Scotland have such high levels of background UPF intake anyway that the signal is harder to pick out, or it may be a real finding.
Speaker 3:And then, looking at the psychological variables, the really interesting things that we found are that patients who have high depression scores have an increased risk of heart failure and ulcerative colitis, and that's independent of previous history and it's independent of inflammation levels and everything else as well. And the second thing that we saw, which is partly correlated, is lack of physical activity. So depression levels and lack of physical activity seem to predict hard flares in patients with ulcerative colitis. So to me these are quite actionable in patients with ulcerative colitis. So to me these are quite actionable takeaways.
Speaker 3:In ulcerative colitis. We can perhaps suggest to people to decrease their red meat intake, to do more physical activity it doesn't need to be a lot, evidently, but more than the recommended amount and that we should be screening people for depression, not only because it's good practice and we know the rates are higher in osteoarthritis patients, but because it looks like it increases the risk of flare, and so that would make good sense to screen and treat based on that. So an interesting series of findings, and we've got lots more coming out from this. But these depression and exercise findings we're presenting as a plenary abstract at the big echo meeting in berlin next month that is really, really interesting and it does make sense.
Speaker 1:It feels a little chicken or egg, though, too, because it's one of those where, like, in order to, in order for people to be less depressed and do more physical activity they also can't be in a flare, you know. So, like, their disease has to be, like, fairly managed in order for you to like, you know, if you want to want to go running, and you're very symptomatic, it does make it more challenging to go running if you're having to go to the bathroom every five minutes. Right, you know so it's. It feels a little like gosh. We really like all of it goes together. How do you make sure you're getting somebody to a place where they can do more activity and they can, you know they're not as affected.
Speaker 3:But at any one time, most of our patients are in remission and remember, these are the patients. These patients were coming into the study in remission and so it suggests that you know when you're doing your housekeeping things with patients, when they're coming in, when they're well, you know. We ask about these things anyway what certainly I do and we're trying to encourage people to think holistically not just asking people about how many times they poo a day is there blood, do they have pain? But asking them you know, how their appetite is and what their diet's like and looking for ways to improve that. Asking them about their sleep and their energy levels, asking them about their mood and exploring that in more detail. Them about their mood and exploring that in more detail.
Speaker 3:And I think we should be asking about exercise, doing life counseling with patients, where we're talking about you know, okay, so your sleep's not so good. Let's have a think about this. What might this be in terms of behavioral lifestyle things? Might this be an IBD thing? Other ways that we can think about, other ways to boost your mood, including exercise, et cetera, and all the rest of it. So, yeah, we need to think holistically.
Speaker 3:And to me the holistic piece is controlling the gut inflammation, because that's the bit that really makes a difference. But it's not forgetting these other things, and I think the key insight here is that these other things are not just nice to have, because we want our patients to feel well as well as have healed guts, but that actually this, if we deal with it, may also properly influence their disease history moving forward. So that, to me, is the key insight. It's not quite the killer bit of information, it doesn't quite show causality, but I think it lines up with lots of other things that we're learning. But I think it lines up with lots of other things that we're learning that you know, the brain and the gut, the body, overall it's all interrelated and it's not just about feeling good, it's about hard inflammatory signals as well.
Speaker 2:This might be a little bit of a curveball, because what you just said kind of takes me back to one of your more recent videos that you posted on YouTube, where you're talking about, like, what's happening in 2025, what's coming up, what's excited about what's happening in research and I might be remembering this wrong, so please correct me but talking about other ways that patients like, maybe through wearables, we can measure other bodily functions, fluids or whatever, to help predict when a flare is coming.
Speaker 2:I'm very interested in that because, as a patient who's been living with it for 25 years, I often say jokingly that my body is a liar where I'm feeling symptomatic, but my labs and tests don't show signs of inflammation yet. And then it's one of those things where I'm symptomatic I'm symptomatic, doesn't show anything, doesn't show anything, and then the bottom falls out right, and so then it's like oh wait, how did you go from nothing to high levels of inflammation? So do you think that what's coming down the pipeline as far as patients having a little bit more control through wearables, of other breathing, sweat, whatever that looks like do you think that is going to help in situations? I hear this all the time from other patients too. I'm not the only person whose body is a liar. So I'm just wondering is that the direction we're going, and did we feel like that will help in situations where the labs don't necessarily match the symptoms?
Speaker 3:Okay, robin, so that's great. This is a perfect curve ball. It taps into one of my other major interests and and really is important and it's difficult. It's a hard problem, right, and it's one that I hope we will get a good answer to soon enough and at least a workable, a semi-workable solution to in in the near future and, in fact, cut to the chase from my end. This is something I've been thinking about for a good number of years. I've not felt like there's been anything enough to make it worth properly rolling out a tool until now, whereas I'm bullish enough to be going full on to build a prototype this year to move forward with that, and I'll talk about the different components here.
Speaker 3:Now, if you have diabetes, the different components here, now, if you have diabetes this is now a relatively easy problem. There is technology that helps us solve this problem, because in diabetes, the important metric, the important thing you measure, is a blood glucose, and you can measure a blood glucose continuously through a wearable sensor, a patch, a cheap patch that you slap on your arm or on your belly that then communicates to your phone. That then allows you to seamlessly measure your glucose levels. That then will communicate to an insulin pump that you wear on your belly that will then deliver the right amount of insulin that you need. Now the problem in IBD is that we miss these key parts, and critical to this is that we don't have a blood sugar. We don't have a glucose measure. The closest I think we get to that actually is faecal calprotectin, but we can't very well have people walking around with rectal catheters in that are continuously measuring their faecal calprotectin level. There has to be a better way of doing this and ultimately, actually, I think the solution to this will be some kind of smart or precision toilet that takes our daily effluent that contains the calprotectin measure, that contains a variety of other different metabolites that can measure your microbiome, that you can go for your first ablution of the day and they can play you a happy song and say Charlie, your chiropractic is undetectable, your microbiome is looking royally beautiful, go off and have a great day. Everything is super. Now there are quite a lot of companies working on this. The technology is in its real infancy and it's future leaning, but I think if we go five, 10 years down the line, there'll be some really interesting things there. So what can we do in the meantime.
Speaker 3:And what else is there? Well, you know I do a lot of endurance sport and I'm a big data nerd. So I have a GPS watch that I wear when I'm out in the mountains my garment that collects everything. But I also wear a whoop. Lots of people will have an Oura ring, lots of people will have an Apple watch, and through that I collect a lot of data that tells me if I drink alcohol, I sleep badly.
Speaker 3:If I work too hard, my heart rate variability is low. If I'm stressed, if I'm traveling a lot, if I'm jet lagged, I'm stressed if I'm traveling a lot. If I'm jet lagged, sleep terribly. It nags at me. But actually it's a useful thing to have. The data is really really nice.
Speaker 3:Does it help us if we have IBD? Tell us anything beyond how our wellness is generally? And right now the answer to that is no. So I think it's a really nice adjunct to any monitoring system because it will tell us how our general wellness, fitnesses, our sleep, all those holistic things that are really nice to have. But if you're detecting your flare because your resting heart rate is 10 beats per minute higher, you are very likely already knowing that because you're going to the toilet five to ten times a day with blood and you've got pain and all the rest of it. It's unlikely currently to be sensitive enough to do what we want. And what do we want? We want a digital monitoring tool that is passive and frictionless, that sits in the background so that we can just very happily get on with our days, forget that we have Crohn's cysts or osteocolitis that will flag a bing to us somewhere that says ah, Robin, doesn't look quite right At this point.
Speaker 3:we need you to do a point-of-care count protecting at home, or a finger prick blood test or whatever it is, and or phone your IBD team, phone your IBD nurse, log a formal consult. Let's do a proper assessment and see what's going on. Can we get there? Well, there's an interesting work that's going on looking at heart rate variability. Day-to-day heart rate variability, I think, is too heavily influenced by environmental factors like poor sleep, like alcohol, like exercise, like stress. I mean, if I even have, I don't drink a lot, but if I even have just one beer or a glass of wine or two, that knocks it off massively, much more than it would do, I think. But it's very interesting in terms of lifestyle behaviors.
Speaker 3:But there was an American group this year that reported some initial findings where they've got an algorithm that smooths it out. It looks at trends over a few days and possibly can show when people are entering a flare state. So I think that's interesting. The patch data that's out there where people are looking to try and measure in sweat not crazy, dissimilar to the glucose thing, but looking at inflammatory markers like TNF, interleukins, even Calpro and Sweat, that data is really not fit for primetime. At the moment, the technology doesn't work well enough. It's interesting something to keep an eye on, but it's not ready for a tool for sure yet.
Speaker 3:So for now I think, and the reason why I'm quite bullish on this is that we can start to put together something that is more than just a patient IBD app for logging symptoms. That is something that does this whilst also capturing the routinely collected laboratory data. So the work that we're doing modeling CRP on blood and calprotectin on poo trends over time looks to have great predictive utility, and so that's something that I'm very excited about. To add in the wearable data for people that can help us bring in their holistic piece and start to look at things like heart rate variability when that becomes more available, but to think also about depression and exercise and a few of those other parameters. Will it yet be that frictionless, passive early warning system for IBD flares? Maybe not, but it will give us the nuts and bolts so that when we've got that, we can get it working.
Speaker 3:There's one other thing, actually, just going back to my rather flippant comment that we can't very well all go walking around with, you know, wires coming hanging out our asses that measure our chiroprotectants. There is some interesting technology looking ingestible sensors, and if we can get that technology scaled high enough and cheap enough, you could potentially take a tiny pill every one or two days. That would just be keeping an eye from the inside permanently, sort of beeping out to a receiver on your phone or you know, at your home, and then we just ping out the toilet disposable, throw it away, you know that and a smart toilet in five to 10 years.
Speaker 3:But you asked me about my journey and I said it's 20 years and it feels like both nothing and a long time at the same time. And if I'm saying now five to 10 years, I'm like well holy moly, it could be incredible by then. So yeah, you remembered it well, robin, it's a great curve ball. It's something I'm deeply passionate about, and we'd love to hear from people who are interested in this space, because I hope to have something ready for beta testing and some direct consumer testing coming pretty soon.
Speaker 1:Yeah, I love that. It's so exciting to think that there's ways of measuring these things without you know, without actually having to do invasive procedures. I am curious is the only way to measure fecal calprotectin in actual poo? Because my thought was, if we're talking about sort of wearable sensors, is there a way to measure calprotectin?
Speaker 3:so people have tried to measure calprotectin in saliva, um, and in blood sweat. I mean, the thing about fecal calprotectin is it's measuring calprotectin in feces and what are you measuring right? Remember what it is. So calprotectin is a protein that is very highly present in the cytoplasm cells of neutrophils, the, the white blood cells that are most present in the gut when it's inflamed, and it's a very stable protein. So when you have inflammation in the gut, you have lots of neutrophils. As these are expelled, excreted into the gut lumen, the calprotectin is released, and it's stable enough to be homogeneously evenly distributed in a poo sample. It's then stable for a few days. You can measure it and get that level, that good measurement of it. So it's kind of getting right to the action. So everything else is a further proxy if you measure it in blood or whatever else. There has been, though, some interest in inhaled gashes, not just fumes, the gases. How do you measure it? Can it be helpful, same sort of way that dogs can sniff out illnesses and things as well as bombs some interest that you know, maybe that sort of? Can you develop a diagnostic nose for ibd flares and things? So there's been work done on this, been done for quite a while. Nothing yet that translates to the clinic. I think it's probably just doesn't work well enough. But you know, it's one of those things that we might just see someone develop something brilliant in the next five years. It's like, oh, that seems to work after all. Very good, I'd like cow protecting wipes.
Speaker 3:If we can't get the toilet to do the job and part of the problem here actually is. So we do it in the lab here in the hospital. So we have a system. It's worth just explaining to people what we do, because it's robust, it works really well, and we don't use the point of care test because they just don't do the job good enough. So everybody knows in our hospital set up from the consultants to the trainees, to the clinical nurses, to the research nurses, to even the surgeons, but to all the administrators as well about the importance of calprotectin. So patients go away from every clinical interaction with a brown paper bag, with a collection dish and a pot and a scoop. They then provide the sample from home and they drop it into their GP, their primary care physician, which then has a van that drives it into the lab here. It's stable enough for that whole process to work and then we run the test, which is an ELISA, simple ELISA, which costs between $10 and $15 a go. It's a really, really cheap test.
Speaker 3:Now the complexity of the test and the bit that takes the time in the lab is not doing the ELISA, it's diluting the sample down so that you can measure the calprotectin. The problem with calprotectin is there is so much of it when it goes up with inflammation that you have to do these dilution steps Because otherwise you could do these kind of point of care tests that we had for COVID and things where you could just do on a cartridge and get a thing working. Actually it's really difficult to do that accurately because there is so much calprotecting, because ideally you want a 50 cents or a $1 wipe or something where you could do first wipe of the day, dispose of flushable wipe it's green, flush it away're happy it's blue, you know. Then you know that you need to go and do the proper test and then the points care calipro test you do at home. They do work, they're a bit fiddly but they're two or three times as expensive for a test that actually you would like to do more frequently.
Speaker 1:So it quickly becomes economically not very viable and it's still pooing into a pot to do a test, so yeah, I guess my concern with the toilet would be like okay, so my initial thought was all the water, then diluting the sample, whatever, but it sounds like that's not necessarily a bad thing. But also, you know, I know, for instance, I have lead in my water, I think you know. Or what cleaners are you using for your toilet that then potentially change something about it? Like you know, if you're using a bleach cleaner for your toilet, is that then changing? What's going to potentially happen with your sample? So I guess there's like there's sort of those things that are in the back of my mind.
Speaker 3:Yeah, the chemistry is not trivial at all and maybe, but I think it's possible. I mean there's a lot of interesting work done on wastewater analysis through surveillance, right. So yeah, that's, that's actually in sewage. So you know you can do all sorts of things. You know people measure, you know the amounts of narcotics in the sewage to keep an eye on that misuse in in big cities. But also looking for surveillance of you know uh, sars-cov-2 and other viruses and things. So there is technology, there might be ways to cross-purpose it. I bet you we will have a functioning smart toilet within 10 years. It just might be that it's $10,000 a go.
Speaker 3:I was in Japan just before Christmas lecturing about IBD, and it's the same in South Korea and in different parts of the region. But every toilet you go, wherever you go, is some kind of smart toilet. I mean, all it does is warm the seat, raise the lid when you don't want it to and then squirt all manner of different jets in places that you didn't even know it was possible to have water. And you know it's moderately amusing amusing if frankly terrifying, as a tourist has no idea what the instructions mean. But they've been doing that for the donkey, so it's scalable, right it was about to say.
Speaker 1:I did watch that talk that you gave in japan and I did love that you, like you, gave that problem to them because, you're right, their toilets are pretty remarkable. Singing toilets, spray, scragrance it does any number of things. Maybe it can help with this too. So I think you've given it to the right folks to potentially work on. So I think that's smart.
Speaker 3:Do you watch it in English or Japanese?
Speaker 1:I watch it in English. Unfortunately, I don't know Japanese well at all. I know a few things, but that's it.
Speaker 3:If you're watching and you're a Japanese person with IBD or know someone with IBD, go to my YouTube channel. There is an hour-long lecture on IBD by me, beautifully translated into Japanese, both the audio and all the slides. So there you go.
Speaker 1:I appreciate that you gave a shout-out to your translators as well, for that one.
Speaker 3:They were amazing.
Speaker 1:That actually brings me to the next topic I have for you, though, is your YouTube channel. I mean, that's the reason I found you is your atomic IBD series that you do, of you talking at your phone while walking around in beautiful places and educating people about aspects of inflammatory bowel disease. It's very understandable, In fact. Somebody on YouTube shouted you out when somebody was like I need content. I'm newly diagnosed. How did you start doing this, and what's been the response?
Speaker 3:How did you start doing this and what's been the response? So I have been talking about IBD since I started working. We talked about my journey in at least 15 years. In some form or other, I've been lecturing. That's why I got involved with Educom at such an early age with Echo, and I realized that I have this real passion for communicating, for storytelling, for presenting, for crafting slide presentations and things that catch people's attention in a way that they can retain the key information that allows us to improve patient outcomes, be it you teaching patients about their disease, or be it you teaching medical students how to look after IB patients, or be it which is what a lot of what I do teaching other gastroenterologists how they can do better with what they do, and doing that across the world. When the pandemic hit, I was doing a lot of this still, but, like everything, suddenly everything was online rather than traveling around and doing it.
Speaker 3:And I was like hang on, I'm doing all these different talks, I might as well just record them and stick them up onto YouTube. So I got heavily. I'm a big geek and I love cameras and I love recording stuff. I love the editing, which kind of stems from my passion as a photographer before that, and so it kind of all sort of fit together. So I spent many hours and almost certainly way more money than I needed to buying, you know, setting up a studio at home and making this all work and at the same time actually doing quite a lot of very deliberate outreach work for the pandemic. So that sort of triggered. It kept going with that.
Speaker 3:A couple of years ago, two or three years ago, I started atomic ibd as a sub stack, as a newsletter, which I have used a lot at times and at times it's a bit dormant and that's a 2025 thing. There's lots of good things 2025. That's coming back, but you know it comes and goes, but it's only ever been me. But then last year I was like there was. I was increasingly aware of a lack of authenticity online People, just very polished stuff, people talking nonsense, lots of the same stuff, so much formulaic BS everywhere, just with particularly a medical education which drives me nuts. It's like, come on, do something a bit different. And then actually I bought myself a new gadget. Totally, that's how it started and because actually I don't walk around talking into my phone, I've got myself this dji osmo which is amazing this not particularly expensive, and I was doing them at home and stable, and I was like, oh, I'm just gonna. And I just started walking around, people said they like the ones walking around. So I kept doing that and what I typically do is go for a run, think about something I want to talk about, and then just that they're all uncut, so it comes from it. Then there's all one take and goes up and it's low. It's not low effort, but it's the. It's low in terms of the post-processing stuff that is otherwise a barrier to do it. So there's going to be a lot more of that coming this year. But I'm really excited actually because I managed to secure a bit of money to work with again with my digital animator that's done a lot of the work that we've done in the past, but also with a friend we did some work with a couple of years ago on a big IBD conference to do some proper production to bring to life what will be the Atomic IBD show. We're going to do a couple of pilots for that, as well as having a bit more structure and a bit more finesse around the uncut pieces, and I'm going to do conversations at conferences or something like that, because the mic set the camera set comes with two mics so I can go and talk to people uncut about their presentations, what's happening and things as well.
Speaker 3:I think we need to do more to bring the information that's there to the community and it's the community as a whole, because we live in a world of information. There's so much information and if you just look at ibD, there is way more published literature that any one person can keep up with. A whole heap of it's just trite rubbish stuff that no one needs to read, but there have been some amazing big publications in the last month, last year, last five years, and a lot of it just ends up just getting reported on. Initially there's a bit of hype, bit of chat on twitter or whatever, and then a few people might be working on it. A few people might not be, and but it's the same. With all the different conversations that are happening, we need to bring them in a way that makes it accessible to us in terms of the stuff that has already got to the clinic and things, but actually also to bring these conversations around, interesting ideas and how we can bring the information to life in an easy way.
Speaker 3:So yeah, a few ideas there and hopefully some of them will stick and will be cool this year. But yeah, there's a lot's going to happen. So if you're not yet subscribed to the atomic ibd, you should subscribe to the substax newsletter and then you'll get everything via there, but youtube is the other place to go. Links in the descriptions below right it's.
Speaker 1:It will be linked in the show notes. Yes, you are absolutely correct. One of the things I do find particularly helpful is you do explain stuff in a way that I think is really approachable to patients, and including the Calprotectin. You did a whole video on Calprotectin. That was really helpful. I watched that one and so you know. After that I really did have a better understanding of like what is this and why do they measure this, why are they looking at this? The other one is you've talked a lot about biosimilars and I mentioned to you this is a particularly fraught topic for Americans because of how often this is being sort of what feels like inflicted upon people and some misunderstanding, I think about just in general. So will you mind? I asked you to just do kind of your take? Europe has been doing a lot more research and using biosimilars a lot more than the United States, so can you give us kind of your brief version?
Speaker 3:So it brings a small smile to my face, I have to say, because you know we've been doing this biosimilars for IBD for 10 whole years, right, and it's only just coming to America, but we've been doing it in Europe for 10 years. We've had biosimilar infliximab since the very start of 2015. We've had biosimilar adalimab since 2018, when Humira's European patent expired. We've been using them in place of the originators since 2015, when we started using CTP13 instead of Remicade, and 2018, when we started using actually there were a number of different biosimilar adenomabs then already using it for new patients, switching patients, multiple switching patients, reverse switching patients, and we have collected data at every single step along the way. Me and my team in Edinburgh we've collected every single data, point on all of this. We've published on all of it. Many, many, many other groups have published on all of this. We've seen large randomized controlled trials published on all of this, and at every single point it's been fine. We see that biosimilars have the same effectiveness, the same safety and the same immunogenicity and the same tolerability as the originators, and they are vastly cheaper. And so if we want to be able to have sustainable healthcare that is delivered to IBD patients across the world so that all the patients that need drugs can get them, whether or by similar versions available, we should absolutely be using them.
Speaker 3:So if you are an American patient with Crohn's disease or osteoclitis or indeed any other immune-mediated inflammatory disorder today worried about being switched from an originator biologic onto a biosimilar, I have a really super clear message for you, which is it will be just fine. We've done it. We've done it to all of our patients in Edinburgh, all in the UK, all in Europe, all in everywhere in the rest of the world. In fact, the only other place that has been behind, like America, is Japan. It's one of the things I was talking about when I was there in December. If the conversation is had in the right way, it's absolutely fine.
Speaker 3:There is this phenomenon known as the nocebo effect, which I think you see quite a lot of in North America, which is where, if the conversation is done wrong, if patients are told in the wrong way, then problems can arise. So, for example, what we've done throughout is we've agreed a policy as a group every time. We've clearly documented our pathways and our process. We've written and communicated with our patients and we've talked to them where they want more than a written communication. And we said this is what we're doing. We're changing our patients from this version of the drug to this version of the drug. This is something we've done multiple times before. We know that the effectiveness, the safety and the immunogenicity is the same. We're doing it because it's a cheaper version and that allows us to be cost-sensitive in an economic world, and it's important for all of us, no matter what health care system you work in, to be aware of it.
Speaker 3:And where patients have come along. We've said look, you know, we've all agreed this, it'll be fine and we'll be monitoring everything as usual. Now contrast that to the belligerent physician or nurse or whoever else or administrator that speaks to a person that says, well, yeah, I have to have this conversation with you. Unfortunately, they're making us do it. We're going to have to switch you from the drug that you love. I don't know why they're doing this, but we're going to have to switch you to this other drug. Either you're going to have to do it or not.
Speaker 3:Whatever, I mean, just imagine how that sets up the conversation, and I'm deliberately giving extreme examples, but that's where the nocebo comes from.
Speaker 3:So, um, and I would really encourage anyone that has a voice in the community to speak sensibly about this. There are certain patient voices out there online that have not been constructive to this conversation, that others in the community listen to, but really, the wealth of data and patient experience is amazing. Now, I do just want to add one other thing, which is that for us in Europe and across a lot of the world, this has not just been about switching from biologic originators to biosimilars. This has been around the dramatic cost reduction in therapy that has enabled us to use the drugs that work with the people that need them, at the times that they need them, at the doses that they need. And we have seen we've got lots of data in Edinburgh that show this a reduction in surgical rates for Crohn's disease, a reduction in colectomy rates for ulcerative colitis, dramatically so fewer hospitalizations for IBD players and our patients in better disease control over time and so globally. It's been absolutely phenomenal as an innovation and it will continue to come.
Speaker 1:I think one of the issues with the nocebo effect here in the United States, though, is that at times, people are being switched without their doctor's knowledge, and so they don't have the opportunity to have the conversation with them either, and that the insurance company is making the decision of the change in formulary, and they show up to an infusion center and suddenly have something different, which happened to a friend of the show. She sat down in the infusion chair and they hung her bag of the biosimilar, and nobody had told anybody that this had happened, and so she went wait a second hang on.
Speaker 1:I didn't know this was happening, and so I think that's a bit of the issue too, where it's maybe not just the doctor not having the conversation in the right way, it's how it is approached in general with our patients. Here is just this like you're going to do this, you don't have a choice, whereas that, like you said, having a conversation that enters into a slightly different like puts it in a different feel, I think would be helpful for every part of our healthcare system.
Speaker 3:It's about getting the conversation right, isn't it? And we were very proactive with this process the whole way, so that meant that we were able to keep the conversation on our terms and have that with our patients. So maybe I could encourage my colleagues in the US to maybe be more proactive in the conversation and say if this does happen, it'll be fine. But also, you know, it's difficult when you've got different stakeholders involved and if people are doing things without anyone's knowledge. But there probably are ways to make sure that conversation is joined up. But I do. I don't envy my colleagues over the pond with the constant navigation of the insurance sagas that seem to be.
Speaker 2:Saga is a good word for it.
Speaker 1:Oh, charlie, yeah, that's just a whole different can of worms. Yeah, thank you. Thank you for that. I think that's going to be really reassuring to patients. Robin, quickly, before we wrap up, because I know we need to, charlie, I want you to give me a one word answer, maybe three at the most to this. You have said in a previous video that 2023 was the year of jack inhibitors, 2024 was the year of il-1223s. What is 2025 the year of?
Speaker 3:we've got the tools now and we have the data. So if it's one word, it's hope I love that it's not so obviously a new class of drugs.
Speaker 3:In any case, we have the tools that are there. The pipeline is rich, it's deep. We've got we've got lots of things happening, but I I want to bring and what I will do this year with the atomic ibd brand is we will bring together the information to help to show this, because, you know, we've got a. We've got a good toolkit that works and we've got a rich pipeline. We've got strategies that we know how to implement. Now. We've done a really good job, I think, with education of the medical workforce in the last decade. There's still work to do there, so more and more clinicians know what to do, and the research output that is there already that will translate into new monitoring tools and newer therapies and strategies is amazing.
Speaker 3:There are other things I could say, of course prediction prediction of disease course, which is a bit I'm really interested in. There's a huge interest in prediction of disease onset in the first place and prevention. That's something that it's great that we've got a roadmap towards now. These are long journeys, but it's great that we're having those conversations now. But yeah, that would be hope would be my word for 2025.
Speaker 2:I'm going to make it my word for 2025 now, shu, but I am very sad to say that it's time for us to wrap. I feel like I could ask you, I don't know, 100 more questions, but I'm going to ask you our very last question. And what is the one thing that you want the IBD community to know?
Speaker 3:I want my colleagues to know that they can really make life better for their patients if they just get on and implement what we know works now. Well, and in particular, to not save their best drug till the last. To not save their best drug till the last, not make patients earn their rounds of therapy just to get them on to effective therapy early, particularly in Crohn's disease, but also in the flowing UC patient. And if there's one thing I want slightly left field maybe, there's one thing I want my patient, all the patients with IBD, to know. It's get your count, protect and checked and know what the number is. Watch my video if you want more detail.
Speaker 3:But if you get your calprotectin checked and it's greater than 250, no matter what the scale well, with most scales broadly. But if it's greater than 250, someone needs to give you an answer somewhere about what's going to be done about it. And if you can get your inflammation under better control by doing that, then that will make a difference. Despite all these amazing things about holistic care and all the rest of it, it's inflammation that is the danger to IBD patients and it's inflammation that we can now treat the vast majority of the time with our great toolkit of anti-inflammation drugs. So if you're a patient with IBD, get your calprotectin checked, know what the number is, and if you're a physician treating patients with IBD, get the inflammation under control.
Speaker 2:I love that so much I'm going to go back and check all of my calprotectin tests previously. I actually have a collection kit sitting in my other room right now that I have to do stool samples to send into my doctor, so I I feel like I need to go do that now. Now that you've like said it, go get it done.
Speaker 1:Dr Lise, this has been so, so much fun to talk to you. It is very evident that you are incredibly passionate about this topic, and it shows very much in this conversation, but also in your videos, and so I definitely encourage people to go learn from you there, where you can find the link in the show notes. By the way, thank you so much for coming and spending some of your Friday evening with us. I know we probably should send you home to go run, but we really really appreciate it and we hope we get you back on someday because this was a lot of fun to talk to you. So thank you so much. Thank you everybody else for listening, and cheers everybody, cheers everybody. If you liked this episode, please rate, review, subscribe and, even better, share it with your friends. Cheers.
