86 - Harry Leeming - Visible Health

Episode 86 of the Long Covid Podcast is a chat with Harry Leeming, CEO & co-founder of Visible Health. We chat through the reasons behind Visible as well as more practically what it does & how it can benefit you!

**We are aware of the latest research by PLRC, just released, on Long Covid & Menstruation which hadn't yet been published at the date of recording - so the statement that there is no data on this isn't quite true, although I'd argue that it's still under-studied.**

Visible Website

Follow Visible on Twitter & Instagram

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID podcast, I am delighted to welcome my guest today, Harry Leeming, who is the CEO and co founder of visible, which is developing tools to use data to manage illness. And there's a lot more to it than that, which we're gonna get into today, which I'm really excited to do. So a very warm welcome to the podcast today.

Harry Leeming  0:22  
Hi, Jackie. Thanks for having me on.

Jackie Baxter  0:24  
I'm so excited to finally do this. So to start with, would you mind just saying a little bit more about yourself?

Harry Leeming  0:32  
Sure. So I previously was an engineer, I spent some time working in Formula One, and then went out to San Francisco. I was working in some very early stage tech companies there, and then moved back to London a couple of years ago, just in time for the pandemic. And then my long COVID journey, which is a similar story to a lot of people. I was a fit and healthy 29 year old. My holidays were climbing mountains, I was cycling across countries, pretty fit and healthy and active. So when I got sick in, I think it was September 2020. So beginning of the second wave, when didn't think too much of it. 

But classically, a few weeks into my infection, things started going downhill. I had severe dysautonomia, severe brain fog fatigue, definitely points where I wasn't even able to stand. And over the last two years, like I have got a bit better. But certainly been very frustrated with how little recognition, treatment and really like support that there's been, on what's been like a really tough journey - similar to yourself Jackie -trying to navigate the healthcare system. 

And it's been alarming to find out that, you know, while my story isn't that different to anyone else's, and you know, we've got this massive amount of people affected, I think, you know, the latest estimate 65 million, 100 million people worldwide. And, and then even more alarming to find out that long COVID isn't new, like we've known about these conditions for decades, and ME, fibromyalgia, chronic Lyme. And so, having come across this world, and the journey that I've been on, I really was like, this is crazy that there isn't any tools really to help you manage your condition.

Jackie Baxter  2:32  
Yeah, like you say, it was a bit of an eye opener for you know - like you I was quote, unquote, fit healthy active, around about the same age as you and I got to hit and, and I've never experienced illness really in my life, beyond like colds and stuff that I got all the time. And it was kind of like opening a door to a whole kind of new world that, as I said, I was very privileged to never have sort of witnessed, and it was eye opening and kind of 

Harry Leeming  3:04  
terrifying, right? 

Jackie Baxter  3:05  
Yeah, aye, overwhelming to kind of realize that all these people who had been ill for so much longer, and it was kind of like, Whoa,

Harry Leeming  3:15  
no, totally. And I think so I just hadn't thought what the words chronic illness really meant. And I didn't think it was possible to be ill every single day. And so yeah, it's been, it's been eye opening.

Jackie Baxter  3:27  
Yeah, yeah, definitely. Yeah, I have a new sort of awareness of other people's suffering almost, I think?

Harry Leeming  3:36  
definitely, I think I think empathy is the one bit of wisdom I've acquired over the last couple of years - is not fully understanding what other people can be going through.

Jackie Baxter  3:48  
Yes, definitely. And I guess that kind of brings us on to the kind of, we call them invisible illnesses, don't we, and this kind of illness where you can look okay, but not feel okay. And that is something that I think has been quite difficult for people around me to understand that, you know, they can look at me and be like, Oh, you look fine, and not quite understand how hurtful that can feel to somebody who may look okay, but they certainly don't feel okay.

Harry Leeming  4:17  
And this is like the big challenge for us. It's like, how, how do we navigate that? How do we like change the narrative around these conditions? And I'm really optimistic that we're only going to understand these conditions more, and the more we understand them, the more that will be recognized. But I think a big missing piece here is that we need objective data that shows that we're ill I think - like the the need for a biomarker in these conditions is huge. Because once we can measure it, then we can start moving things forwards in terms of like treatments, research.

Jackie Baxter  4:50  
Yeah, definitely. And yeah, you're right. You know, biomarkers, data is really useful because you can use it to kind of track and to show what's going on. But there's also a little part of me that goes, But why should I need data for someone to believe me when I say that I'm not well? There's a little bit of me that kind of goes Uhmmm about the need for it.

Harry Leeming  5:10  
Yeah. I mean, I think it's a, if you look back at history, it's a classic error that we make. Right? We've done the same with MS before we had MRI scans, we thought with MS were mallingerers. Same with asthma before we had steroids. We thought that was caused by anxiety, sort of story as old as time, the less we understand that condition, the more that we attribute it to them being psychosomatic.

Jackie Baxter  5:38  
Yeah, that's a really good point, actually. Yeah. 

Harry Leeming  5:40  
And I think we're in a difficult position now where we have actually managed to find biomarkers in so many conditions that the ones that are left behind, we're like, well, they must be psychosomatic, because we can't find a biomarker in 2023. So I think that is one of the biggest challenges that we have. And it's something that, you know, a version of that, that we're trying to tackle with visible.

Jackie Baxter  6:03  
Yeah, definitely. So yeah, let's talk about visible um, I guess, yeah, what's the story behind it?

Harry Leeming  6:09  
So I guess, like, you know, along my journey, there's been many steps where I've just been like, this is crazy that nothing has been built to help people with these conditions. And I remember seeing my doctor in the first couple of weeks, months, and my tests were all coming back normal. But I could see from the data on my fitness tracker, like showing that there was something very wrong with me, and my body was not responding correctly to external stresses. 

And then, you know, move on another couple of weeks, I'm trying to exercise my way out of this condition. And in fact, like I pretty much prescribed myself GET, and I pushed myself hard enough that after a couple of days, I actually checked myself into A&E - my symptoms have become so severe. And then I started from then on, you know, certainly learning the hard way around pacing, that I was using my fitness tracker now to help me to pace myself, to help me to rest, which is the opposite of what it's designed for. So you know, every step of the way, I was using this like, really powerful device, but I was using it in completely the wrong ways. I was using it in the context of illness, not fitness. 

And so a year ago, I was well enough to be able to start Visible and we're using wearable technology to help patients to measure and manage their own condition. So measuring them through the digital biomarkers, what we call them, but these sort of illness specific insights. So being able to look into like dysautonomia, and capture that through wearable data, time spent upright, for example, is a really good metric, when you particularly towards the severe end, when correlating with symptom severity, and then on the management side, being able to, like answer those questions like, what amount of activity is safe for me, that's going to reduce my chances of a symptom flare up, like what interventions are making me better, what are making me worse, and helping people be patients on that journey.

Jackie Baxter  8:11  
Yeah, and we were talking just a little before we actually started recording about how Visible is being built, and the sort of collaboration aspect and involving not just a token amount of people with lived experience. But I mean, like yourself, who is like heading up the whole thing, as well as all the people that are involved? So I would love to talk a little bit about the process maybe?

Harry Leeming  8:38  
Yeah, I mean, I think what we're doing and visible was different in a few ways. So I think we're in a unique situation where, you know, suddenly, with long COVID, we have a lot of people that need a lot of help and support, and they really need it  Right now. They needed it three years ago. And I think most other companies would wait until what they've built is perfect, and it works great before they like release it to everyone else to us. And we don't really have that luxury in this situation where we really need to move faster, and we want to get things out as quickly as possible. 

And so we've taken a bit of a risk in being really open about what we're building at visible and getting out there. When it's, you know, there's still got bugs, there's still lots more to build and improve upon. And but really, we've done it so that we can, you know, we can make these changes faster, like, as you mentioned, also, so we can build it with the community. I mean, we have half our team have either long COVID and ME. So we do have a good sense of what's needed. But this, they are such diverse conditions that we want to be careful we're not projecting our journeys too much into the app, and that we're really taking on board like the whole community's experience so that we're building stuff for everyone, useful for everyone. 

And so yeah, I mean, we the community has been really awesome to see the community get involved and the amount of feedback that we've had and really like that helped us build all Visible faster with like an incredible amount of data, which really makes a difference. So if there's an opportunity to say thank you to everyone who's been beta testing Visible, I'll definitely take it now and say, on behalf of the whole team, we really, really appreciate it. And to add to that we try and write blog posts every two weeks. So that everyone can keep up with the progress. And we're really open about, you know, what we've been working on and what we're working on next.

Jackie Baxter  10:24  
Yeah, that's amazing. I mean, I think what you were saying about not projecting our own kind of experiences onto it. I mean, I think we possibly can all be guilty of that, you know, where we think, Well, you know, this is long COVID because this is what I'm experiencing. And, you know, then when I'll speak to somebody else, whose symptoms are presenting in a completely different way. And I go, Oh, okay. Yeah, no, that's completely different. That's very interesting. So it can be a thing that we do, I think, you know, it's not deliberate, I'm sure. But I guess by having more people involved, you can kind of counter that maybe?

Harry Leeming  10:59  
No, totally. And I mean, as an example of that, like, fatigue isn't my main symptom. So you know, and that's one that affects nearly 70% of people with long COVID. So, you know, it's really important as we're building it that we're taking into account that experience.

Jackie Baxter  11:14  
Yeah, definitely. But I also love what you were saying about around 50% of your team being people that are experiencing chronic illness of some description. And I think a lot of employers should be listening to this episode. Because, you know, this is a perfect example of how people with chronic illness are not worthless, they're not useless, they can work, but they have to work in a way that is flexible enough to work for them. 

And this has been something that I've seen time and time again, is people not being able to do their jobs, because they're not able to do it flexibly. And you know, for sure, there are some jobs that you can't do flexibly, but there are so many that can. So I think, you know, it's a real perfect example of that, I think, which is awesome.

Harry Leeming  12:00  
Yeah, we, we've been really lucky in that we've been able to build the company from the ground up with that in mind, we do everything remotely, we do everything asynchronously. And there's a lot of tools out there now that we can use to record, you know, videos to each other or record audio notes. And using that. So we don't require, you know, you have to be up at like nine o'clock for, you know, a weekly standup, which would be so be the classic meeting that would usually exist in a startup. So, yeah, we have built that flexibility in to the whole company, which is really cool.

Jackie Baxter  12:37  
Yeah, yeah, that's fantastic. Yeah. So I'd love to get a bit more into Visible. And can we talk a bit about how sort of practically it works for people with chronic illness?

Harry Leeming  12:51  
So we can talk about, there's two parts to Visible. So we've got our free app that you can download from the App Store right now. And then we have our wearable subscription, we call Visible Plus, which we're currently using with a very small group of beta testers, we've just got 200 people using that right now. And we're hoping to expand that over the next coming months. 

Now, the free app doesn't require a wearable. And what we do is in the morning, we can pull out some of your like key insights about your body. And we can do that through your smartphone camera. So using a 60 second reading, where you put your finger on your lens of your smartphone, we can pull out your heart rate, and also heart rate variability, which gives you a really good indicator of how you're doing today versus your baseline. 

And then we also have the ability for you to track so your other symptoms and then also like exertion, so not just physical, but cognitive and emotional, and then also other factors that influence your condition. So if a woman have periods, like the menstrual cycle can have a massive impact on symptoms. And so the ability for you to see, you know, what's making you better, what's making you worse, how much capacity have you got for activity during the day. 

And we also have a section on the app where you can keep up with like the latest research what's going on. And in the future, you'll actually be able to opt in to share your data directly with researchers, which we're really excited about, we're having some really exciting conversations about, and we're hoping to have that available in the coming months. 

And then for our wearable integration. So visible plus, this is where we're using real time stream of heart rate data to be able to help you manage your your rests, your activity, your pacing, and also we're building out now as these digital biomarkers that I talked about. So being able to help people to measure their condition as well as manage it.

Jackie Baxter  14:46  
Yeah, can we talk about the digital biomarkers - so what is a digital biomarker, because this is fascinating me?

Harry Leeming  14:53  
Yes. So I guess - another way of like phrasing it, is like an illness specific insight. So it is like a pattern that you see in the data that only exists in sick people versus healthy people. So, for example, right now, if you wanted to get checked for dysautonomia, you would go do a tilt table test, or you do a NASA lean test. And that is for those that don't know where you are, you lie down for a couple of minutes, and then you stand up, and you will record your heart rate changes as you go through that. 

But obviously, like you're doing that throughout the day, anyway, you do that in the morning, you know, if you have a crash in the afternoon, that will happen throughout the day. And we can actually capture that change in heart rate automatically. And we can track that irregular response to these stresses that only exist in long COVID, but don't exist in say, a healthy person.

Jackie Baxter  15:52  
So if you had something like PoTS, for example, where your heart rate had to shift by, I think, is it more than 30 beats per minute, isn't it? Your app would track that and it would go bing, or whatever notification you have?

Harry Leeming  16:05  
Absolutely, absolutely. And that's really why we called visible visible like, we're using wearable data to make these conditions visible. So while our tests are coming back normal, we can see that the nervous system is not functioning correctly. And using that data, to not just help you to like manage your own condition, but also in the future. For your friends and families - I know Jackie, we talked a bit about this before, but sort of this misunderstanding you have from those closest to you. And that dreaded question you get asked every day like, you know, how are you doing? 

But if that can be answered with objective data, then we can really bridge that gap and understanding. And then also making it visible to your clinicians so that they can diagnose you and they can treat you. And then this like bigger piece, which is making it more visible to researchers so they can better study us. And then the larger vision of really changing the narrative of these conditions and making them visible so that  we can shift policy around it, we can shift out these conditions are talked about.

Jackie Baxter  17:09  
Yeah. And that's brilliant, isn't it? Because if you've got that, literally in your hand data, you know, rather than taking, you know, six weeks to get an appointment with your doctor, and then when you finally do, you go in and you say I don't feel very well, this happens, these are my symptoms, and you know, your doctor may be quite up to date. And may know some of these things. But you know, GPs are so under pressure, I think the world round, you know, they may not be up to date with the latest research on long COVID and PoTS, for example. 

So if you were to show up and say, Here is my data, it has literally shown my heart rate jumping at that much. This is called PoTS, you're so much further down that kind of trajectory towards getting some help, aren't you? And that's kind of what we want, isn't it, we want people to be getting help, and being able to feel better, sooner, rather than waiting years and years.

Harry Leeming  18:02  
No, totally, and I just think the healthcare system is not set up for these conditions. I mean, they're very focused on trauma, on life threatening and very little time is available spent on life-limiting conditions. And really like this framework of using for a long term fluctuating conditions, like it doesn't make sense to go see a doctor for 20 minutes, and then have no contact with them for a couple of months and see them again, like you want to capture what's going on in between. 

And so like, that's how wearables are so powerful for these conditions of being able to do that. And I think empowering patients to measure and manage their own condition, and really, like push forwards this knowledge, like back into the medical community, I think is going to be a way for us to speed up knowledge with your GPs, with your primary care providers.

Jackie Baxter  18:54  
Yeah, definitely. So yeah, you're collecting all this data kind of, you know, minute to minute or second to second I guess, which must be a huge amount of data. That's amazing. That's kind of just filtering through my brain a little bit.

Harry Leeming  19:07  
Genuinely, I think we have one of the largest datasets on long COVID. And chronic fatigue/ME already.

Jackie Baxter  19:11  
Yeah, that must be incredible to have all of that. So I'm just kind of curious about, you know, on a practical level, I mean, obviously collecting the data and being able to show it to clinicians and family and you know, people. What about I mean - I'm kind of loath to say it, but the word self management is one that people kind of, don't seem to be hugely happy about. But you know, a lot of, certainly what I've experienced is, you know, we're on our own most of the time, aren't we? You know, we see our doctor, however, you know, not that frequently. A lot of the time, you know, you're doing this on your own with a bit of guidance, maybe from elsewhere. So sort of practically day to day, what are the sorts of things that people are able to use the app for?

Harry Leeming  19:57  
Yeah, I mean, just to pick up on that point. I mean, we see other chronic conditions. So diabetes, for example, we've got people measuring and managing their glucose levels. And there are the best tools available to do that. And really, like we're building the same thing for these conditions. 

And the guidance that we can provide is around activity first and foremost. But it's also in helping you spot patterns in your conditions. So you can adjust your lifestyle around it. So like what interventions are working, you know, your breathing exercises, your yoga, like really being able to see the data to show you like that is working. And what you should be doing more of, and what you could be doing less of, and answer, like all these questions we have about our condition like, am I getting better? Am I getting worse in the long term? Like, what's making me better? What's making me worse? And really, trying to give a bit of more control back to patients.

Jackie Baxter  20:51  
Yeah, exactly. And actually, that's a really good point you just made about, am I getting better? I mean, I find this myself, you know, day to day, I'm like, I don't feel any different, I still can't do this thing I want to do. And you know, I still can't do that other thing I want to do. And somebody like my other half, with a little bit more perspective, is able to look at me and go, but you're so much better than you were two months ago, four months ago, six months ago, a year ago, and I go, am I? And he was like, Well, yes. Because you can do this. And you can do that. And you're not crashing, and you know all of these things. 

It's like, Oh, yeah. Okay, because we're so kind of, you know what, when you're so in something, it's very hard to see the bigger picture, isn't it, but I suppose if you're tracking it, you're able to kind of look at your app, and it will kind of show you. And we get very bogged down in the ups and downs of it. Whereas the app will be able to kind of look in a more linear way of sort of over a couple of months, that won't get so bogged down in the fact that today, I feel terrible, which, you know, might be true, but you know, on the whole, actually, you're way better than you were a month ago, for example.

Harry Leeming  21:49  
Yeah, totally. And actually, when it comes to tracking, we do try and minimize as much as possible, how much time you have to spend using the app, like, certainly like the free app right now is quite data heavy. So you do a morning check in - takes about a minute, evening check-in doesn't take more than 30 seconds. But we're quite strict in our framework around trying to limit how much we feel like we need to use the app to be able to get the most out of it. 

And what's great about Plus, is the wearable integration is that we can track all this stuff passively and continuously. So like moving to a world where you don't have to think about your condition too much. And where, you know, you can dive into your data, you know, either the end of the day, or even at the end of the week, if you're doing better and be like, hey, yeah, like things are going in the right direction, like I am making the right changes.

Jackie Baxter  22:42  
Yeah, and I guess that's where having people with the condition working on the project, you know, you get this in some of the research studies, don't you, where you have to fill in like a half a questionnaire every day. And you're just like, I can't do this, like you obviously haven't run this past lived experience people because anybody with long COVID would have told you that you cannot expect someone to do a half hour survey every day, for example. So you know, you know, and your people that are working on it, you know that you can't be spending too much time on it, because otherwise you have to pace your app participation time, which is like starting to get a bit daft, isn't it?

Harry Leeming  23:20  
Totally. Yeah. And actually, we do get a lot of requests and feedback for us to add more functionality, more tracking, within the app, you know, Can we can we track it in the middle of the day or in the morning, in the afternoon. We've pushed back a bit against that because we do think that the best way to get long term data is to really like actually restrict what you're measuring to just the core things that you really need to know. And I know that can be quite frustrating. But it was really like us looking long time at what's the best thing for these conditions?

Jackie Baxter  23:51  
It's a fair point, I guess. Because if you're wanting regular data from as many people as possible, then you want to keep it at a level that everybody can do, I suppose, don't you? If you're expecting sort of three or four check-ins a day, then 50% of people maybe won't do it. So you gonna lose that section of the data, aren't you?

Harry Leeming  24:12  
Yeah. And I think it's also important to think about like feedback loops. So if something is changing in your body as a result of something you did a couple of hours ago, that is something that is more easy for us to identify, that actually, we don't really need an app to be able to help us make that connection because it happened so quickly. 

But the stuff that we struggle with more to make connections with is what did I do yesterday, that's now impacting me today? And so really we're helping on like, a longer timeframe, than being able to tell you like, you know, that walk you went for an hour ago has made you worse now. That's where I think we can provide less value. And so that's why we don't sort of push that more frequent tracking, if that makes sense.

Jackie Baxter  24:53  
Yeah, of course, and I guess things like the breathing exercise that I started doing three weeks ago, and it didn't seem to be making a difference at the time, but over time it has - those incremental kind of longer term changes, I guess?

Harry Leeming  25:06  
And that's the bit that's really hard for you to keep track of and to be like, Oh, that's actually helping.

Jackie Baxter  25:10  
Yeah, totally. So and you know, one of the common features of long COVID - and I think probably that's in common with most chronic illnesses - is this post exertional malaise or post exertional symptom exacerbation - Isn't that the other one? So how can we use the app to try to avoid that? Because that's the pits, isn't it? 

Harry Leeming  25:29  
No, totally. And so in the free app, we've got two ways that you can do. It is still somewhat limited. So we give you a score every morning that tells you like, how much capacity have you got for activity versus your baseline? So we look back at the last three months of your data. And we can work out what's normal for you and your condition. And then we can see like, Okay, your heart rate variability is suppressed, which is a really good indicator that your body is struggling. And also a higher resting heart rate can also indicate that too. And we also combine that with how your sleep is and how your symptoms been for the last few weeks. And from that we can derive a score. So we can use that to guide you. 

But that's only one - that only tells you at the beginning of the day. I mean, it doesn't give you that advice throughout the day. But alongside that, you're also able to spot patterns. And we have a trends tab where you can see, you can like directly compare your cognitive exertion against your symptoms, or your emotional exertion against your symptoms. So you can start to see for yourself, like, oh, this was my symptoms are worse because I did too much yesterday, or, you know, your menstrual cycle started, therefore, actually, like it wasn't necessarily exertion, that my reason is my symptoms are worse, and therefore actually, maybe I do have a bit more capacity. So those are sort of things that we can do with the free app. 

For the Visible Plus, we have the ability to give that kind of guidance throughout the day. And so we use a somewhat basic - at this stage - heart rate limit alerts, so we can let you set a limit. And we can tell you when you've exerted too much or too long. And the further into this we get, we're able to start, you know, using more complex techniques to be able to not just like reduce those crashes, but try and predict them as well. And really, like try to understand your energy envelope as much as possible, without triggering these larger symptom flare ups.

Jackie Baxter  27:24  
Yeah, of course. And I guess, if you're able to track it a bit more through the day, I mean, what I've noticed, and I think is quite common to a lot of people with dysautonomia and PoTS, is this kind of not feeling good in the morning, and it taking quite a lot of time to get yourself going with your hydrating, with your salts, with your you know, getting your arms moving. But then, you know, by lunchtime, by early afternoon, by evening, you know, actually, you may be starting to feel a bit more okay, and you're able to do a little bit more. But it took me a long time to realize that - I just thought, Oh, I feel terrible in the morning. Therefore, I need to like, you know, push myself through it. Which, spoiler alert, it's not a good idea.

Harry Leeming  27:59  
I know, I was thinking about when I got on the call today at 11 o'clock. I was like We could have done ourselves both of that in the afternoon.

Jackie Baxter  28:07  
Yeah, yeah, definitely. It's fascinating though, how much data you can collect and how it can be really, really useful. What do you think about the - and again, this is going to be different person to person, I'm sure - but the sort of using data in a useful way to help ourselves, versus the kind of hyper-vigilance that it can bring out in us. Because, you know, some of the time you think, Well, you know, I'm watching my heart rate and watching it go up, oh, my goodness, it's going up. It's going up, you know, when you can kind of get yourself into this kind of vicious cycle. And, you know, it's like, where's the line between it being really useful and it helping us? And it actually not?

Harry Leeming  28:45  
Yeah, so I totally agree. And this all comes back to that earlier point where I said, like, we're quite careful about how much we're asking people to engage in the app. And there's some decisions that we've already made, like the first device that we're integrating with is a polar device that doesn't have a screen. So it actually stops you from that, like hyper vigilance and like that, and anxiety-inducing of being able to see your heart rate the whole time, which actually sometimes cannot be helpful. 

So yeah, it's something that we think about a lot. And we're going to continue to work on. And I think the temptation as we build visible will always to add more features, add more capabilities, and we've got to be careful that we're always doing that with - everyone's like, health comes first, like both physical and mental. So taking that into account is crucial. Totally agree - something we think about a lot at visible.

Jackie Baxter  29:44  
Yeah, it's a difficult one, isn't it? Because I mean, I'm one of these people that wants to know things. I want answers. I want to know everything. So I'm the sort of person that would be like, Oh, data, Oh, isn't this wonderful? I could look at all of this. And you know, and it would be really useful, up to the point where I then took it too far. And it ended up being not helpful. And you know, not everybody is like me, thank goodness. But it's going to be something I guess maybe that people have to work out for themselves a bit as well? Bit of autonomy there. 

Harry Leeming  30:13  
Yeah. 

Jackie Baxter  30:13  
So what are the kind of future plans? You mentioned, having the data being able to be available to people like researchers, and you said, there's loads of exciting stuff going on. How much of that are you able to talk about?

Harry Leeming  30:25  
Oh, yeah, so we've got some exciting conversations happening in the background to allow people to share their visible data very easily and directly with researchers. And people who've used the app will see that tucked away, there is already a section in the app. And right now we have a study that's going through ethics, with Imperial College London, and I mentioned that the menstrual cycle - and we all know this, in the community - has a massive impact on symptoms. But this isn't in published research. [correct as of date of recording]

And so we can use the visible data to get those insights into the research community. And so we're working with Dr. Victoria Male at Imperial College. And she's studying that, which is really exciting. And we have more studies lined up with other research institutions and nonprofits that we'll be adding soon. And I hope we can make a big announcement about that in a couple of months time.

Jackie Baxter  31:19  
Yeah, that sounds really exciting. Because like you say, it's all that stuff that we know, like you just said about the menstrual cycle impacting on symptoms. We all know that because we've experienced it. And if you haven't physically experienced it, you know it because you've seen it in support groups, or from other people mentioning it. But it's not something that is kind of talked about so much in the research community. So it's all very anecdotal. But you know, if you can collect it more in terms of actually physically having the data, it's kind of like, here, I'm going to present you this research study on a plate - now, please go and make it. 

Harry Leeming  31:54  
Yeah, exactly. We're already tracking all this stuff for ourselves anyway, so why not make the most of this data and share it with people that can move the science forwards?

Jackie Baxter  32:03  
Yeah, definitely. Is this something that people can opt in and out of?

Harry Leeming  32:06  
Yes, yeah. So always, always default opted out. And, yeah, you can opt in within the app, and you go through a consent form. So when you sign up to Visible, you're not tied into any research at all. So all your data is protected. It's only when you choose to opt in with researchers - and even when you opt in to share it with them, it's all anonymized as well.

Jackie Baxter  32:28  
Of course, yeah. You said that the visible plus is being beta tested at the moment, what are your plans to kind of roll that out more kind of fully - if that's the word?

Harry Leeming  32:42  
Yeah. So we have an early access program, we've got a waitlist, where we're currently emailing people, like every couple of weeks, and we bring on a few more people onto it. But we really want to make sure that we're like giving the right guidance that it's not too draining to us, we're getting that right balance of guidance versus too much tracking. And so we've been quite slow, compared to the free app in expanding that group. But we are working as hard as we can to get that available to as many people as possible as quickly as possible, because we've quite a long wait list.

Jackie Baxter  33:19  
Yeah, I was gonna say it must be an awful lot of people wanting to come on board. But it's really great that you are listening to people and you're getting this kind of feedback almost kind of in real time, aren't you? And you're able to really listen to that. Whereas I suppose if you had it open to too many people, then the feedback might be a bit more overwhelming?

Harry Leeming  33:41  
Exactly. So we actually have within the app, both free and in visible plus, the ability for you to measure the team directly through the profile section, and you usually get response with 24 hours. We read all the messages, and always reply to every one of them. So if anyone does have feedback, who's using the app, then they can directly get in contact with us, which is really awesome. And certainly, it's quite a bit of work, but it's so worth it. 

And I would say, that's probably like the limiting factor on visible plus is how much support we can provide. And we don't have a very big team. And so we're slightly limited in that sense. Because you know, when we build new stuff within visible plus, what comes with that is usually a lot of bugs, a lot of questions, which it takes a bit of time for us to get through those and be able to respond to everyone.

Jackie Baxter  34:32  
Yes, that's Yeah, more hours in development to then fix those new features. 

Harry Leeming  34:36  
Yeah, exactly. 

Jackie Baxter  34:37  
But it must be so worth it. I mean, I guess you must see this kind of day to day, you know, the work that you've put in, and the thing that you have kind of been involved in developing with your team. And you know, seeing the people that it's benefiting and getting the feedback from them - must be pretty cool.

Harry Leeming  34:56  
It is incredibly motivating. So you know, I mentioned half our team have these conditions. I mean, they're already super motivated actually - but the other half, who weren't is exposed to these conditions before they joined Visible. It's really motivating for them to get these messages through on like how much of a difference like Visible is making to some people's journeys.

Jackie Baxter  35:16  
Yeah, definitely. Yeah, that's amazing. 

Harry Leeming  35:19  
We've got over 25,000 people who have joined the platform in the last four months. And that is all purely through word of mouth. And with that, it means that we've got last time I checked like 20 million rows of data on these conditions. And we're starting to see patterns already - I mean already we updated our morning stability score just this week. And that is three times more accurate than the first version that we launched, which was only using a month's worth of data. 

So we are seeing, like, the larger the dataset we get, the more accurate we're able to make our algorithms. So that's been awesome. So the more people that use it, the more people that join, the more accurate, the better Visible becomes. So a big thank you to like the community for supporting what we're doing.

Jackie Baxter  36:09  
Yeah, definitely. I guess it's one of those things where the more you put in, the more you get out?

Harry Leeming  36:15  
No, it's it's so it's so fantastic that we've got some incredible data scientists that are looking at this dataset, and I'm really excited that in the future, we'll be able to share it with researchers.

Jackie Baxter  36:27  
Yeah, that's so cool. Well, thank you so much for joining me today. It has been so much fun chatting to you and fascinating to hear about how you're kind of using your experiences and helping others and you know, making this whole thing. So thank you so much, and all the best with the next kind of stage and everything and of course with you in recovery. 

Harry Leeming  36:51  
Awesome. Thank you so much Jackie for having me on.

Jackie Baxter  36:52  
It's been a pleasure.

Transcribed by https://otter.ai