Episode 6 - Spotlight on The Brain Tumour Charity app BRIAN

In this Spotlight episode Chandos talks to Fiachra Woodman about BRIAN.

BRIAN (the Brain tumouR Information and Analysis Network) is an online app which has been developed by The Brain Tumour Charity to help people cope with a brain tumour diagnosis. BRIAN can help you - and those supporting you – to understand how you are doing and to make better informed decisions.  Fiachra talks about some of the ways you or your loved one can use BRIAN such as carrying out challenges in the app, setting appointment and medication reminders and much more.

One of the aims of BRIAN is to use the information provided by you and your loved ones to enable researchers to better understand brain tumours to improve treatments and ultimately find a cure for this terrible disease.

You can find out more and download BRIAN here https://askbrian.org.uk/ or through Google Play or the App Store

If you have already downloaded BRIAN could spare a minute or two to complete a short survey on how you have found using it.  As Fiachra says your feedback is really important to us in helping us make BRIAN into something that is really helpful for you.  You can find the survey here https://www.surveymonkey.co.uk/r/3Z6CFWV 

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Transcript

Sarah: 0:38

Welcome to Let's Talk about brain tumours the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival.

Chandos: 0:57

Hi, and welcome back to the third in the Spotlight Series for the brain tumour charity. As you know, a cure can't wait, and the brain tumour charity are moving further and faster to help every single person affected by brain tumour. In each episode, we meet a different member of staff, and look at what their role is, and how they're working to help half the harm that brain tumours have on people with a diagnosis. Today, we meet Fiachra. And we talk about the Brian app, we talk about what Brian is, and how it can help you on your branch image. And so can you start by telling us a bit about you and what your role is?

Fiachra: 1:28

Well, my name is Fiachra. And I joined the charity as their CTO back in March 2019. I came on board to build Brian, and my background is it development, it has been sort of all my life, but in areas like banking and food management, and fintech and loyalty. So obviously, you had to come up through a pretty steep learning curve when it came to this area.

Chandos: 1:53

Could you tell us a bit about what Brian is and where the concept and idea came from

Fiachra: 1:57

BRIAN is an app at a Weber. But it's worth pausing and what the vision was for Brian. And that vision predates me several instance, vision, the former CEO of the charity, and what she had in mind was create an environment where people share information with each other, so they can make better informed decisions about their own healthcare. But she also then wants to be able to create an environment where we could gather patient reported outcome measures from patients, and to be able to commingle that with national datasets, which we've obtained from NHS digital, and then also create a place for people to store all the information about treatments or appointments or medications, their side effects, and that one safe, secure place. And then finally, for us to be appointed data dissemination to researchers, because we know the hoops that we have to jump through to get access to data, the rec approval, the SPT approval, the Icart approval, you know, being assessed by an issue status, whether we were appropriate recipients and patient, whether we can be trusted will use that data. And we wanted to make that process of getting data researchers easier. So that getting access to data will never again be an impediment to people being willing to do research in this area. So it's an app Brian's also web app, but it's also a big data project.

Chandos: 3:18

And where are we with the development of the programme and the support that Brian offers?

Fiachra: 3:24

So there is always seems there's like there's a bit more to do with Brian. But certainly, in terms of what we've done so far, we launched the Brian web app back in September 2019. And then we put the app in the app stores, and December 2020. And that app and web app are being used by patients, by carers, by guardians and by healthcare professionals as well. And we've got about four sorry, about 5000 users on Brian now. And there are lots of different features. And I suppose some of the most use features and Brian is the quality of life checking. The quality of life checking is something that people can do quite quickly within the Bryon app or web app. It allows them to record how they're feeling physically, cognitively, what they feel their memories, like, how fatigued they are, how they're feeling emotionally, and then record any symptoms they have, and the severity of symptoms, and to record notes about how they're feeling on that day. So we've got about 24,000 of those called check ins for people using Brian. So it's a well used feature within Brian. We also, by the way, use validated questionnaires within Brian. And we've got just under two and a half 1000 at your TC validated questionnaires within Brian. Brian affords people the opportunity to record information about their appointments and their treatments and medication and their side effects just as Sarah had envisaged. We've also built something in called challenges within Brian. And again, this is a very extensively used feature. We've got about 10,000 challenges completed by pupils. And there's four challenges and Brian. The first one is the selfie challenge. And the selfie challenge allows somebody to take an image of themselves. And then we take that image from the app, bring it through to our cognitive AI service. And then we do an analysis that image that allows us then to do some very fine grained measurements on that image by analysing it. The second one that has a speech charge. With a speech challenge. What we've done is we've parsed in little snippets of Alice in Wonderland to get over copyright challenge is. And we then present the user with a little snippet of Alice in Wonderland. And we asked them to record themselves reading that piece of text, and they get shown a new piece of text, every time we go to that challenge, we then take their rendition of that little snippet of Alice in Wonderland, we bring it back into, again, our cognitive AI service, we do a speech to text conversion of their condition. And then we compare that to the original text. And that allows us to do some error reporting. And then we also do things like build metrics on jitter, and shimmer and pitch and various other things you can do voice calls, then there's also within Brian stability challenge, the stability challenge asks a user to move a site or a target and hold that site over the target for 20 seconds. And we basically just use the accelerometers on the device to give the user that challenge. And the last one we call the stack challenge. The SNAP challenge is, is basically a challenge whereby we should use a one image, we showed them another image, and we asked them whether the image is the same or different than the previous image. All that data, by the way, is being fed into studies that we're conducting with Matt Williams, and Imperial. And they're designed to help us try and say something new and different about disease recurrence and disease progression. Another feature within Brian which is normal view uses navigate, the navigator asks the user to make a declaration as to where they are in their pathway by answering just two questions. And then that allows us to show that user context sensitive help in relation to their declaration, in terms of things that they might want to do actions, they might want to take questions they might want to pause, etc. We also have things like the trial finder benefits, find it within Brian as well. We've also, by the way, both integrations into things like Fitbit, and Google Fit and Apple Health. So we can take all of your wearable data, your sleep data, your resting heart rate, etc. And we show that on the same graph that we show the quality of life. So those those are some of the features that we put in. But we've still got more to do, we want to build a seizure tracker within Brian. And we're also building a questionnaire builder, and Brian, and we're building something we're calling thin link, which will make it easier for trials to say what data they want to gather from people using Brian, but also make it easier for patients using Brian to say whether they want to, to provide their data to that particular truck. So everything we do within Brian is guided by a number of groups of people. One is our Brian champions, or Brian champions are a group of academics and medics and people either living with a brain tumour or caring for somebody with a brain tumour. And we tend to speak to them on a quarterly basis, who are strategic. And we're then blessed with our young ambassadors group. And our young ambassadors give us wonderfully important, candid feedback in terms of what works, what doesn't work, what's useful, what's intuitive, and what's accessible. And we would not be able to build Brian without being able to get access to that input. Then we also have a clinical advisor to Brian in the form of MapReduce, he has a say in some of the things that we do. And we're also blessed by people like Professor kings, who has been a great friend, Brian is a staunch advocate of Brian from the very outset, and of course, the project board that has a big thing. So there's still more to do. And we're now by the way, just starting to look at using Brian, in other disease areas. Thankfully, Brian was being very well received, we presented to an MRC Lifemark meeting. And we've recently to put through something called the Orca review, which is an organisation that review medical apps in the UK, latency, we've got 91% on that, which puts us as the number one ecology app in the UK. And I think number six. So there's quite a bit of interest in about about using Brian and other therapeutic areas. So we're pursuing that right now. So that's kind of a, you know, 10,000 foot view of where we are on the development of Brian, what we've got done.

Chandos: 9:29

And I love what you said there about, it allows patients to track their journey and how they're feeling because I know, when I've been through that myself, it's been hard to keep a track of when I've had like a symptom or how I can tell that to my doctor. Yes, effective way. So I guess it's a useful tool for for people who are newly diagnosed or even if their doctor and say, This happened on this date, so I can give that factual record is one of

Fiachra: 9:55

the powerful bits of feedback. We heard from one of the ambassadors, you know, that we know if you're seeing your consultant maybe once, twice, three times a year, the pressure to be able to summarise yourself to your consultant in an already pressured meeting in the space of 15 minutes. And to be able to summarise How you been across those those dimensions of physical Well, being emotional well being fatigue, memory, etc, is really challenging. So again, one of the things that we still need to be able to do is find a way to make it easier for people to effectively create an explanation of how they've been Not only for, for the people to themselves as well. So they gain perspective on what's going on. So that's something that we continue to work with CNS is on how we actually do that, how best we can provide that perspective.

Chandos: 10:41

And you mentioned briefly that you you partner with some people to Once the data has been connected to offer that information to them so that they can practice. What does that look like? And how does that help patients and their long term? Yeah, so

Fiachra: 10:55

as mentioned, Brian is is also a data project, we take quite a bit of data into Brian. So we've got data from malicious digital. And that's no mean feat. And so we've we've got data from other systems. And it's just under 18 million records relating to 150,000 people have had brain tumours in England over the course of the last 11 years, we take four different datasets from initial studies, they're all under something called the test dataset, the hospitalist statistic dataset. So we take the admitted Patient Care Dataset, we take the Critical Care Dataset, outpatient and ad dataset, we also then take the IDs, as in registration information from NHS digital as well, we've got roughly equivalent data set from Public Health England, and we've just got access to the server database in Wales. And we've also now just got access to aggregated data for Northern Ireland and Scotland. All that data has to be wrestled into a format that we can use, it all has to be staged, referenced, made accessible insights. And all those insights are then built into Brian, and they're available to anybody who signs up to Bryan. And you know, people don't realise that there is no cost anybody in terms of accessing what's in Brian. And so those insights are used by patients or carers. They're used by healthcare professionals that are used by researchers as well. But we have a whole variety of different research insights within Brian all predicated on that data does national datasets, we have, for example, and inside called comorbidities. And that allows us to identify other conditions that were detected with people's records before and after their their diagnosis, we have an insight called incidents and a map that allows the show by local authority, the absolute number and percentage of population of people within that local authority, who had brain tumours. And to be able to actually show that over each year data we have, we have data on scans and surgeries being performed by NHS Trust, and dependent on the quality of the data and the data source the data, we can sometimes apply filters to that data that allows to bring that down to, you know, a particular brain tumour type particular greater brain tumour, a particular age range of people that we're looking at the gender that we're looking at. So there are some powerful insights within Brian that we made accessible to anybody who's one of the other things that we built within Brian is something called your graph. And your graph allows you to decide as the patient or the care of what you want to graph. And so you can choose to graph how you're feeling and how you do physically, cognitively, memory wise, etc. Fatigue wise, plot that against your treatments and your appointments. And when you last had a seizure when you last add alcohol, and you know what your wearable data is saying as well, because remember, we've we've linked this into Fitbit. So we can actually link all that data in and show that on a graph. And the user then can decide what they want to see what they where they want to look for correlations what they want. So that's one of the other and uses of data, we're passing data to Imperial as part and parcel of the LD challenge status going across the period. were passing day, we're using Brian as part and parcel to the brain at trial being run by period as well. We're working on a project to cool image data rather than period and from Kings as well. And we hope that'll be the genesis of the project that will encourage all the brain tumour centres across the UK to pull image data with us as well. We're also then looking to share data with allbranded up in Edinburgh. So we've got more work to do, in terms of disseminated disseminating data out to researchers. But that's the reason why Brian exists actually make to satisfy that desire to be able to share data. So yeah, more work to do on that as well. But making some good progress. And finally, how can people participate in Brian and support audits is doing so Yeah, great question. So I think we're certainly excited to Brian, as a patient, or as a carer, or healthcare professional. Sharing your data and adding your voice is is a really huge help to what Brian is all about. And then other things I'd say is that we started doing outgoing calls to new users of Brian, just to help them get familiar with the app as quickly as possible, and to help them get comfortable with the various features and Brian because there's quite a bit in Brian. So you know, having somebody say, you know, there to answer your questions to show you something else you can do within the app, we've decided is something that's going to help people start to use Brian more. And you know, we're always looking for volunteers that actually can start to make those outgoing calls for us. You know, we provide all the support and the training to actually help people do that. But that's that's another area where people get involved and Join the young ambassadors, join our Brian champions. All those are ways that people can get involved. And of course, the other thing that they can do is when they sign up to Brian, there's a Contact Us facility within Brian, you know, talk to us. Keep telling us what you like, what you don't like, what makes sense, what you think is absolute rubbish, and we'll keep us.

Chandos: 15:45

Great. Thank you for joining me today. Pleasure. Whether you've been diagnosed with a brain tumour or a family member or friend has brain tumour charity there to help. For more information call 8080 800 Triple 04 That's 808 800 Triple 04 or visit the brain tumour. charity.org for the latest information athletes.

Sarah: 16:06

We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go if you enjoyed this podcast, please can leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness