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BRIAN: The groundbreaking brain tumour app

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BRIAN

The BRIAN (Brain tumouR Information and Analysis Network) app has been developed by the Brain Tumour Charity to help people cope with the life-changing condition.

The app is an innovative tool helping the charity achieve its aims of supporting people with brain tumours, raising awareness and aiding research into new treatments.

Health Tech World called up the charity’s chief scientific officer and expert oncologist Dr David Jenkinson to find out more about BRIAN and the future of healthcare apps.

What was the impetus behind the BRIAN app?

People personally affected by a brain tumour often don’t know what to do [when they are diagnosed].

Many people don’t realise that you can get a cancer in your brain. So to go from feeling dizzy or having a seizure to learning about brain tumours is a massive, steep learning curve.

People also feel very isolated and very much in the hands of others at that time. We wanted to help them make decisions based on other people’s experiences.

We also learned that clinicians often don’t know the outcomes for their patients and researchers are struggling to get access to data. We wanted to speed up or improve all of those things.

But the main thing we were hearing among the community that we serve was that they didn’t want other people to have to go through what they had.

That’s why they fund research and why they are so strident out there in the press and campaigning. They want their data to be used to help other people.

Did you work with researchers, clinicians and patients when you were developing BRIAN?

The first thing we did was to survey the personally-affected population.

Over 270 people responded to that survey, and 96 per cent of those said that they wanted to share their data.

95 per cent wanted to share it despite the fact that it could be hacked and 92 per cent were happy to share it despite the fact that it could identify them.

David Jenkinson BRIAN

Dr David Jenkinson

That was powered sufficiently to be representative of the 88,000 people we believe are currently living with a brain tumour in the UK.

That patient mandate went on to be supported by a group of individuals which spans researchers, commissions and those personally affected, plus some people from outside the immediate brain tumour and disease area.

The app enables people to track their condition and inform their treatment. What are some of the popular functions?

Probably the most used function is the quality of life check-in. This allows you to track how you’re feeling, emotionally, mentally, fatigue and those sorts of things.

Healthcare professionals see those that have been treated for a brain tumour maybe every three months.

I don’t know about you, but I can’t remember what I had for breakfast this morning, yet we’re asking people who have problems with their brain to remember what happened to them three months ago.

By tracking this information, they can then share it with their healthcare professional. [The clinician] can make better judgments, better decisions and better suggestions from that data.

We can also set up a tracker so that if any of those [metrics] fall below certain thresholds set by the healthcare teams, they get an alert, and then they can log into the app and see what that triggered that alert.

Anecdotally, we know of one alert that would have been an unplanned admission. Outcomes and costs from unplanned admissions are worse than for planned admissions.

That was converted into a planned admission, so they were able to manage the patient remotely, initially, before being brought in at a later stage.

What about the challenges?

I like the selfie challenge. The individual takes a selfie which is then sent off to image processing where all their features are mapped.

It’s experimental at the moment, but it may well be that those selfies can show recurrence sooner than an MRI as certain brain tumours can cause a facial palsy, similar to a stroke.

We also know people have anxieties about MRI. They’re anxious about going, some people are claustrophobic, they are then anxious about getting the results. So if we can change that in any way, that would be fantastic.

Medication tracking must be very helpful, too.

Many people with brain tumours are on multiple medications. BRIAN allows them to set alerts for that.

We’re supporting a clinical trial called ARISTOCRAT which is looking at cannabis-derived drug, Sativex. There’s some evidence that it could improve outcomes when used in combination with temozolomide.

That’s a self-titration piece where the individual doses up to 12 times a day.

As part of that, you’ll be asked to fill out a paper diary.

In the future, when you use the app to record having taken your medication, it will also tell you the time that you took it.

Most people fill out a paper diary once a day at best. But it could be just before their appointment. So again, you’re back to that memory issue.

How else can BRIAN help guide treatment?

Appointments are very short and people are often nervous and likely to forget the questions they wanted to ask.

With BRIAN, you can select some questions ahead of time.

We’re also just about to introduce a holistic needs assessment tool.

The user answers some questions around quality of life. Those responses will then pull up the areas where you might benefit from extra support.

That can be shared with your medical team, your clinical team and the clinical nurse specialist to help you to access those pieces of support.

I guess a lot of these things are about giving people an element of control over what must be a very challenging experience.

That is the key thing. We’re not able to give options on treatments at this point, because, unfortunately, there are no options. But we can certainly give people the information that they need at the time they need it.

We can also look to the future. For example, we tell people who are undergoing surgery that they should be asking whether their tumour is going to be stored fresh-frozen or paraffin-embedded.

If it’s fresh-frozen, you can do other things with it that you can’t do when it’s paraffin-embedded.

One of the treatments that we’ve seen results from recently might be the first real change we’ve had to treatment in in 15-20 years. But the tumour needs to be fresh-frozen. So things that guide people through their options are really important.

And in the future, we’re hoping to be able to guide people using the data from other people’s experiences.

It may be that you want as much quantity of life as you can get, and are not so worried about the quality of life. It could well be that you just want to be able to live what life you have to its fullest.

That’s very much a personal decision. We want to give people the information to make that decision for themselves.

Do you foresee prescription apps having a long term future within oncology?

The use of apps as prescriptions is obviously increasing and there was the recent announcement that everyone’s prospective GP records will go onto the NHS app

We always say that the power of the data is in linking it. It’s no good having quality of life data if you don’t know where someone is in their clinical pathway.

If you were just about to go into a cycle of chemoradiotherapy, we could say that people like you experienced nausea or fatigue.

When you know those things, you don’t feel isolated. You don’t feel like you’re the only person that’s going through it.

You can relate a little and, more importantly, you can prepare for it.

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