DIGITAL SCIENCE DRIVING PATIENT CARE

Pioneer discovers how GOSH will use digital technology developments to improve on the hospital experience for children and their families and how charity support helps.

Artificial intelligence (AI), virtual reality (VR), robotics – as healthcare becomes increasingly digital, how can these advances in technology help improve patient care and experiences at Great Ormond Street Hospital (GOSH)?

It’s a question the hospital continuously asks itself; and just one organisation supporting it to look for the answer is Great Ormond Street Hospital Children’s Charity (GOSH Charity). From the launch of Epic, GOSH’s patient record system in 2017 – which led to GOSH being recognised as one of the UK’s most digitally advanced hospitals – to supporting the Data for Research, Informatics and Virtual Environments Unit (DRIVE), GOSH Charity has consistently championed and funded digital transformation at GOSH.

Bringing together leading industry experts in technology, AI and digital innovation, DRIVE is a unique partnership between GOSH and UCL Great Ormond Street Institute of Child Health (ICH). At its heart are teams who manage the Digital Research Environment (DRE) – which provides the technological infrastructure to facilitate research undertaken at GOSH – and the GOSH Charity funded Clinical Informatics Research Programme (CIRP), which works closely with ICH.

DRIVE’S DIGITAL OUTLOOK

DRIVE’s Director, Chief Research Information Officer and Professor of Pathology at ICH Neil Sebire, highlights the short- and long-term digital areas the unit will be focusing on, designed to ultimately enhance children’s experience of GOSH.

“The short-term key focus is around clinical decision support,” he explains. “This is where we look at where we can have digital tools that will help a doctor or nurse make a better decision on how to manage an individual patient. At its simplest, this could be an alert on an electronic patient record system saying this patient should or shouldn’t have a particular medication. But we’re also working on machine learning and AI to look at data we have on previous patients to help make better management decisions on future patients.”

The second area of focus, which DRIVE has begun work on, is in operational decision support. This is asking whether the rich data GOSH has available can be used to help the hospital run more efficiently, for example in better scheduling to reduce cancellations. “Then a longer-term area of focus is around technology for patient monitoring,” Professor Sebire adds. “This is where we use digital innovations to help patients manage their conditions better, perhaps with an app attached to a Fitbit or something similar, to keep them healthy at home. This is a real part of DRIVE’s ambition, but it needs a different type of infrastructure, software developers, coders etc. While we don’t have the resource for this right now, the aspiration is for this area to grow.”

Professor Neil Sabire

“Ultimately, we want everything we do to be judged on whether there’s patient benefit.”

HOW CHARITY SUPPORT HELPS

It’s within DRIVE’s Clinical Informatics Research Programme that we can see just how GOSH Charity support is helping. The CIRP is specifically designed to support research in clinical informatics, a new and evolving area of medicine, and it’s through this programme that charity funded grants are awarded.

“This programme is about bringing clinical and nonclinical people together,” Professor Sebire explains. “It’s where computer science students interested in healthcare come to work with clinical supervisors at GOSH and computer science supervisors in DRIVE to develop and test early prototypes. It’s not about developing an algorithm that would work on a super computer, but developing something that can be used in real-world clinical care.”

There are some exciting projects currently taking place at CIRP that are funded, or part-funded, by

TECHNOLOGY IN ACTION

Joe, now 18, was the first-ever patient at GOSH to make use of virtual reality (VR) technology to examine the site of one of his procedures.*

At just eight years old, scans taken at his local hospital revealed Joe had a leaking valve in his heart. He was referred to GOSH for surgery to repair his mitral valve.

“The valve wasn’t shutting properly and was letting blood flow back into upper chamber of the heart,” Joe’s mum Melanie says. “His heart was having to work harder than it should have been, which could leave him tired. The surgeon was able to tighten up the valve so it stays closed when it’s letting blood out of that section of the heart.”

Joe’s symptoms at the time of the surgery suggested he might have Marfan syndrome and a genetic test when Joe was 15 also indicated this. He then needed further surgery to correct and replace a section of his aorta.

To plan for the operation, surgeons created a 3D model of Joe’s heart and used VR technology to examine the site of the procedure.

Melanie remembers the impact it had on the whole family. “The VR software enabled us to put goggles on, use two hand controllers and feel as if we were moving through Joe’s heart, which was absolutely amazing,” she says. “We all had a go. You could travel through Joe’s heart and the aorta. It was mind blowing. His surgeon used that VR footage as well to minimise any surprises and look at the heart from every possible angle.”

Joe is currently doing well, has just moved into Year 13 at school and is aiming to go on to university.

“His transition to adult care at St Barts Hospital has been smooth, with a joint appointment a year ago with his GOSH and St Barts consultants. He’s also had his first visit to St Barts, which showed his heart and aorta were all normal,” Melanie says. “Our whole experience of GOSH was extremely positive with plenty of support and incredible expertise.”

“The VR software enabled us to put goggles on, use two hand controllers and feel as if we were moving through Joe’s heart, which was absolutely amazing.”

GOSH Charity. One is ‘user acceptance in the age of technologically augmented healthcare’. This is looking at how best to evaluate these technologies with clinical teams in their work environment. It also includes studying the role of human values and trust in these developing technologies, which will eventually boost healthcare interactions and provide safer care for future technologies.

Another area of support includes data science projects, where a PhD student is currently working jointly with the University of Toronto on a patient-centred tool to characterise disease severity in cystic fibrosis. “The study will be looking at large amounts of data on children with the condition to see whether we can use machine learning to develop a ‘health score’ that will give a better overall measure of a child’s health,” Professor Sebire says. “Another study is about to start on causal inference, which is taking a large amount of

data in a population, knowing different patients were treated in different ways but outside a clinical trial. Then asking, can you use machine learning to start creating knowledge that humans wouldn’t have, about how a particular treatment affects disease outcome?”

Partnerships and knowledge collaboration are clearly an essential factor for DRIVE. The unit already supports joint-funded PhD students with the national health data science institute Health Data Research UK, the Turing Institute, the UCL Centre for Doctoral Training in Interactive AI at Bristol University, Cambridge University and Manchester University. It also works with undergraduate computer science students at University College London through its Industry Exchange Network and has partnered with Microsoft, IBM, ARM and NTT Data.

TEAMING UP WITH YOUNG PEOPLE

Yet DRIVE’s partnerships extend beyond academic and corporate partners to one very important group; the patients themselves. By engaging with GOSH’s Young Person’s Advisory Group (YPAG) directly, specifically around AI, it is discovering first-hand how technology can improve patient experience.

“We’re asking questions such as would children and young people use AI differently to adults?” Professor Sebire points out. “This has been a real eye opener as to what they’d accept. For example, the idea of having a robot nurse didn’t go down well but a device that would alert them to their medication dose being low was a good thing. We need to work with children and young people to discover what’s acceptable to them and keep that at the centre of technology development.”

Professor Sebire acknowledges there’s still a lot more to explore in AI and VR technology in the healthcare arena. “Working with YPAG has shown us that this current generation of young people have grown up with photo-realistic games and TV, so they have high expectations around graphics,” he says. “We realised early on that VR content needs to be much better quality than perhaps an adult would expect. There’s certainly potential with AI, VR and gamification; they will be significant areas to explore in the future. As an organisation we’re never going to be making that content but someone could and that’s where we need partners.”

CLINICAL INFORMATICS RESEARCH PROGRAMME - THE NEXT STEPS

As Professor Sebire explained, CIRP’s focus will be on machine learning and how data can be used most effectively; for example, work is about to start on evaluating digital stethoscopes, while another area of development will be around remote monitoring. “We’ll be looking at whether we need to see patients on site for all their future visits,” he adds. “There’s still a lot of work to be done on how you manage the workflow of all these digital tools, but this could be a big change for how patients and staff interact with the hospital.

“What we want to do with the CIRP is to build clinically useful tools for GOSH. Even once you’ve built a tool, you can’t suddenly use it on patients, it has to go through an evaluation process. We’ve appointed an academic clinical lecturer, whose role will be to do that evaluation piece, taking it to clinicians and patients and asking them how they would use these technologies.

“Ultimately, we want everything we do to be judged on whether there’s patient benefit.”

Heads Up – patients and families can log on the MyGOSH app and submit questions they’d like to ask before appointments, which also gives doctors an idea of what they’re going to be asked.

Fingerprint – within Epic, captures the likes and dislikes of a patient so doctors and nurses can engage with them on a personal level.

Essence – similar to a private messaging board, but for clinicians. Clinicians write many notes on a patient, this provides a short narrative for quick updates, with links to the more comprehensive notes.

RECENT DIGITAL INNOVATIONS ENHANCING THE PATIENT EXPERIENCE