How apps and wearables can support patients with epilepsy

Dr Rupert Page, Consultant Neurologist, Poole Hospital NHS Foundation Trust.

I have been Chief Clinical Information Officer (CCIO) for Poole Hospital NHS FT for six years and Chief Scientific Officer (CSO) for eight years. I have been involved in informatics from the outset of my career, initially in the development of our electronic patient record system. I could see significant benefits in clinicians having access to a patients’ data. Patients often arrive expecting me to know their medical history –to have reviewed the letters, notes and blood results beforehand.

More recently we secured an Innovate UK grant to develop an app to support people suffering with epilespy, in partnership with industry and the University of Kent. The app allows patients to record seizures at the time of experiencing them, and prompts them to note down information such as missed medications or lifestyle events or changes beforehand. The app then alerts the neurology team managing the patient’s condition, who then review any changes in the pattern of illness and  send advice back to the patient. Telephone and email communication does not elicit the same engagement; the app allows a much faster response for the patient.

We have also been working on getting the app interacting with wearable devices. We have already developed a seizure detection algorithm using wearables and have been looking at what new insights the data that wearables could provide. The more data we have, the more we can help the patient and the more we can learn about epilepsy. Long term, I could envisage machine learning approaches having the capability to, for example, use that data to recommend the best self-management approach for individuals. It may even be able to help guide selection of the most effective treatment.

I applied to the Digital Academy because I increasingly recognise how central digital is becoming to our work as clinicians. The content of the course is fantastic. So far, areas covered include strategy, working with suppliers, negotiating effectively, health information systems, cybersecurity and user-centred design. Developing necessary skills as a leader is a golden thread that runs through the course.

It has resulted in a huge change to what I bring to informatics meetings. My relationship with the IT Director and senior executives, as well as my influence over the direction of travel has increased dramatically. We ran a digital transformation summit in Dorset in October and, from my learning at the academy, I was able to lead a session on using data to improve care. With senior leaders from across Dorset we looked at variations in the live data for dementia, Chronic Obstructive Pulmonary Disease (COPD) and hip fracture and developed practical suggestions to improve outcomes. With my own specialty of epilepsy, we have taken this a step further and implementing cycles of change with re-evaluation to drive continuous improvements in care. The data from approaches like the smartphone app will help drive this based on the lived experience of patients as well as the team.

I want to make Dorset a learning health system, reimaging our services based on what we can learn from data. Influencing boards to recognise the importance of digital transformation and fund it appropriately is essential to achieving this. To succeed, we must engage the front-line. Organisations need to give them the head space to both engage with the process and upskill them to confidently deal with informatics professionals, convincing them of the value they add as front-line staff. For example, building a network of engaged front-line “digital practitioners” with communications tools to share concerns and learning, backed up with tools such as glossary of abbreviations, jargon and concepts that are often an obstacle to understanding. Not only will this bring front-line staff into the conversation now, but their involvement will attract fresh talent through a new digital career structure and form a pool from which to draw the CCIOs of the future.

The digital engagement proposal that we have in Dorset comprises three component parts: people; reducing risk; and improving quality though data. The most important of these is people and focusses on diffusing digital skills and leadership through each organisation by creating a community of champions or “digital practitioner leads”.

It’s imperative that staff at all levels are engaged in driving change through digital if we are to succeed. The digital engagement proposal is associated with a cost pressure around releasing key staff from front-line clinical work for their new roles and for training. This is clearly a challenge given financial pressures but is a requirement that all boards should be willing to invest in. If they do not, I fear we will simply repeat the experiments of the past with no change in outcomes. I passionately believe that clinicians need to be involved in the conversation to change things for the better, and the opportunities if we do so are immense.

Dr Rupert Page

Rupert trained in London and has worked across the South and South West. His research area was the application of MRI to neurological disease. He was appointed as a consultant neurologist to setup an epilepsy service for Dorset in 2008. He has been involved in computing and technology for a long time and his first “Hello World” experience was in 1982. He is part of Cohort 1 of the NHS Digital Academy.