Enabling the early and equitable diagnosis of epilepsy in infants in the community (EPIC)

We will address a major healthcare priority of epilepsy care for children at community level by developing a person-specific solution to detect and monitor childhood epilepsy.  We have identified this gap in our ongoing engagement with families and clinicians.
Epilepsy affects over 50 million globally and around 600,000 people in the UK.  It is particularly common in young children, impacting neurodevelopment, education, quality of life and mental health.  It has potentially far-reaching consequences into adulthood through economic burden and disability.  There are major barriers to access healthcare, particularly the brainwave test needed to confirm the diagnosis and monitor epilepsy.  Currently, this test is available only in specialist centres and is heavily dependent on specialist clinicians.
We will use Infantile Spasms – a severe form of childhood-epilepsy – as proof of concept to develop a transferable solution for early diagnosis and monitoring of treatment.  Infantile Spasms are characterised by:

repetitive brief movements (spasms) within first year of life which are often misdiagnosed as far less serious conditions;
excessive seizure brain activity which needs brainwave tests to confirm diagnosis; and
frequent adverse neurodevelopmental problems, which improve by early treatment.

Delayed diagnosis poses a huge burden on children, families, education and health services.
The current approach to diagnose and manage Infantile Spasms requires 10 or more visits to a specialist unit for brainwave testing.  This poses an unfair time and financial burden on families and contributes to longer waiting times at the specialist units.
Our team – composed of engineers, families and clinicians – will co-deliver a fair and equitable solution for person-specific early diagnosis, monitoring and prediction of response to treatment of childhood epilepsies.  Our solution will be applicable at home and community healthcare settings (GP, pharmacy...) and will improve patient outcome and quality of life.
Our objectives are:

To partner with families and clinicians to identify barriers preventing the early detection and management of childhood epilepsies in the community, and to co-deliver solutions to them.
To co-develop methods to automatically and efficiently measure changes in brain activity due to early stages of childhood epilepsies.
To co-create artificial intelligence methods that unearth robust relations between the brain activity measures and patient characteristics for more accurate and patient-specific management.
To demonstrate that our solution reduces health inequalities by enabling the detection, monitoring and prediction of response to treatment in childhood epilepsies in the community.

Our multidisciplinary team is uniquely placed to co-deliver our solution to childhood epilepsies thanks to our complementary expertise and ongoing stakeholder engagement, including our partners UK Infantile Spasms Trust and Epilepsy Research Institute UK, among others.  We will create exciting new advances on brainwave assessment and causal artificial intelligence, and integrate our tools into a portable device that will be piloted by families in the community.
Our work will in turn enable more rapid access to treatment for children with epilepsy and related neurodevelopmental problems in line with Core20PLUS5, an NHS approach to reducing health inequalities for children that has epilepsy as one of its priorities, and the World Health Organisation intersectoral global action plan.  Our stakeholder engagement and grounding in causal methods will empower us to address issues of fairness and equity due to sociodemographic characteristics and yet unaddressed data biases head-on, ultimately improving quality of life for children and their families.