“Imagine you’re on a train, and when it gets to the end of the line, there are no buffers. The train can’t stop and goes all over the place. That’s what my brain was doing.”
Sarah Pamment has epilepsy. The condition creates bursts of electrical activity in her brain, which manifest themselves in many ways – Sarah will suddenly stop while walking and be unable to move, or experience a disorientating feeling as if she is on a slide.
She would suffer these and other symptoms seven times a day. After every seizure, she would try to write down as much information as she could in the hope of finding a pattern or cause. However, one of the side effects of Sarah’s condition is a “poor short-term memory”, and being able to remember details about potential triggers as well the events was difficult.
Sarah’s situation is not uncommon. An estimated 600,000 people in the UK – one in 131 – are believed to suffer from epilepsy, and around 87 new diagnoses are made every day. The condition directly and indirectly costs the National Health Service £2bn annually to treat, with epilepsy leading to 3% of all Accident and Emergency visits and a total of 1.3 million days in hospital a year.
New research by Public Health England (PHE) has found a 70% rise in the number of deaths of epilepsy patients between 2001 and 2014. PHE said there was a need to improve the clinical management of patients and make improvements to their wider health by tackling smoking, alcohol intake and poor diet.
Microsoft has partnered with industry, academia and the NHS to develop a solution that enables patients to monitor and keep a record of their seizures.
Epilepsy is most commonly treated with medication – sodium valproate and carbamazepine are two examples – but the combination and doses of these prescription drugs vary depending on whom is taking them, and they only work for around 70% of people. They can also come with side-effects such as drowsiness, headaches, tremors and hair loss. Other options for controlling the condition include surgery to remove part of the brain or placing a small device in the patient’s chest that emits burst of electricity.
“It can take months or even years to optimize a treatment plan for an individual patient,” said Dr Rupert Page, Chief Clinical Information Officer and Consultant Neurologist at Poole Hospital NHS Foundation Trust. “Health, life quality, sleep habits, mood, alcohol, drugs, psychiatric or psychological issues, and myriad other factors can all influence a patient’s seizure risk.”
Many people with epilepsy also experience depression and isolation, which can cause stress and trigger more seizures.
“Think about someone who’s having a lot of seizures a day; travel becomes really difficult, even catching a train,” said Ian Denley, Chief Executive of digital healthcare firm Shearwater Systems. “If someone with epilepsy has a seizure, for them it’s normal; they come around after a few minutes and they just want to get where they’re going. But if you’re on a train, then public transport providers will call an ambulance, which will take you to the nearest hospital. A simple train journey suddenly results in that person ending up in a hospital, miles from where they live and they have to get home.
“There is a big impact on daily life. At one presentation I attended, a member of the audience came up to me and said: ‘When I come to work, my wife, who has epilepsy, is on her own for hours and I’m worried sick’.”
Understanding an individual’s specific symptoms with a view to enabling them to self-manage their epilepsy would change that patient’s life, as well as remove pressure from the already-stretched NHS. Doctors will, of course, always help someone who is ill, but it is better for everyone if that person doesn’t require hospital treatment.
The Epilepsy Care Alliance was set up to make this vision a reality. It’s a programme run by a private/public consortium that gives epilepsy patients wearable technology, which they wear around their wrist like a watch. The device records data such as sleep patterns, exercise, heart rate and temperature at regular intervals. Clinicians use this information alongside notes about seizures that patients input into an app, and medical records to build up a picture of an individual’s condition.
“We gained the ability to spot when someone had a seizure, and some people might not even know they’ve had one,” Denley added. “That data was sent to clinical teams in hospitals, who contacted the patient and said: ‘We’ve think you’ve had a seizure, can you provide more information in the app”. As a result, we capture more information about the seizure itself, how the patient is feeling, what their sleep patterns are like and any complications. It’s a much richer data set.”
The whole project has been co-funded by Innovate UK, the UK’s innovations agency, and runs on Microsoft’s cloud platform, Azure, which has world-class security and agility to handle huge amounts of potentially sensitive patient data.
The system could also potentially “learn” to classify seizures when they occur and alert clinicians and carers. The patient can then be consulted with remotely and their prescribed drugs and lifestyle recommendations can be modified in real time.
The consortium – Poole Hospital NHS Foundation Trust, the University of Kent, Shearwater Systems and System C & Graphnet Care Alliance – hopes to break the pattern of patients being rushed to A&E, staying in hospital and seeing their GP and community health workers after being discharged, before they have another episode and the cycle starts again.
It was a familiar routine for Sarah Pamment. She opted for brain surgery, but that failed to completely remove the symptoms she was experiencing.
“I knew things weren’t quite going as they should and I was referred to Dr Rupert Page. We did some tests and, sure enough, the epilepsy had reared its head again,” she said.
Sarah began seeing Page once a year – “I would wait; I wouldn’t contact the nurses because I always think there’s someone worse than me” – keeping a record of her epilepsy on her phone in the meantime. She was then invited to join the myCareCentric Epilepsy programme, and became one of a number of people to see an improvement in her condition – “I’ve gone from having two or three [seizures] a week at the start of the pilot to one or two every three months, so it’s definitely made a difference”.
Since myCareCentric Epilepsy was launched in 2016, patients involved in the program have seen a three-week reduction in the seizure notification time, an 80% cut in the time it took medical professionals to respond to individuals and 30% fewer admissions to hospital.
The team also incorporated a system that automatically lets a care team know when their patient is in hospital. If someone with epilepsy is unconscious and taken to A&E, doctors might decide they need surgery, so would recommend nil by mouth. Under these circumstances the patient is unable to take their usual medication, which could kill them. With myCareCentric, an alert is sent to the care team, which can intervene and prevent that happening.
Dr Jon Shaw, Director of Clinical Strategy at System C & Graphnet Care Alliance, said: “What’s really exciting about this is that it’s a ‘first of type’ project that combines smart wearables, patient-facing applications and enterprise communication technology, which gets messages out to the care team in real time. Putting data into secure Azure environments gives us huge scale and ability to leverage machine learning and artificial intelligence capabilities as services and ultimately improve patient outcomes.”
In response to the success of the programme, Microsoft and the consortium hosted a hack at the University of Kent, hosted by Assistant Professor Christos Efrastratiou and his team, to see what insights they could gain from the data captured by the program, and if there was anything that could be done to improve patient outcomes.
Specifically, they wanted to see if the programme could include previously inaccessible patient data in clinical letters, use new data points from the wearable devices, and encourage people to self-report more information such as mood and drug compliance.
“The consortium met three months before the hack and we went through what info and insights we wanted to gather, said Microsoft Technical Evangelist Dave Baker.” What if we switched all the wearable device’s sensors on and collected continuous data? We modified the app to get verbatim evidence. Would it be possible to analyse information in patient documents held by clinicians, so we can get a wider view of their condition?”
The team found a link between poor sleep and seizures, allowing them to more accurately predict epilepsy events on subsequent days. They also realised that adding more data, even seemingly innocuous background information, improved the accuracy of the analytics.
“We noticed there was impact on sleep after someone had a seizure, so if someone had a bad night, we could look for a seizure the day before,” Baker added. “We also found that patients’ wrists would often rotate 90-degrees during a seizure, because as the limbs shook and then went rigid, the muscles would tighten up and the wrist would naturally rotate.”
All the information the consortium gathered from the hack was valuable in helping clinicians understand what may trigger a seizure.
“This approach has the potential to revolutionise the management of epilepsy by optimising the use of currently available treatments,” Page said. “Simultaneously, the powerful insights gained from the much deeper awareness of the myriad lifestyle and other factors which affect seizure frequency may open up entirely new areas of research or treatment. The timely, expert support that can be provided through this solution helps patients manage their own condition and restores to them some of the control that the diagnosis of epilepsy all too often takes away.”
The team hope it’s another step towards better treatments.
“We would like to get pharmaceutical companies involved. The efficacy for drugs hasn’t improved in the past 30 years; there must be data there that we could use to have better shot at helping companies to improve their products,” Denley added.
“Rupert [Page] believes that if you get a patient’s medication right you can help them become free of seizures. That’s our target, too,” said Denley. “Rupert has 6,000 patients in Dorset and 2,000 that are seizure free; he’s aiming for 4,000, and that would be a huge impact.”
While that would be an amazing milestone, the team are already looking at taking their solution to more patients – and even people with conditions other than epilepsy.
“We’d like to extend this to new models of care for other conditions,” Denley added. “Epilepsy is only a small percentage of neurology, which in turn is only a percentage of all specialties in hospitals.”
If the solution was rolled out nationally it could save the NHS more than £250 million. Extending it to other conditions and new models of care could potentially add billions to these savings.
For now, Sarah is happy that myCareCentric allows her to be treated as a person, rather than being identified by her condition.
“What’s really comforting is from what you put in the app, there is going to be a qualified member of staff reading the app at the other end,” she said. “They will contact you if they have any doubts about what you have put in. Because of that, they can change your medication or check that you’re OK, which is really good.
“It’s not just covering the medical side of it, it’s covering the whole person.”