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Making the connection: How ‘Big Data’ could improve care for young people with epilepsy

Dr Colin Dunkley_Rosemarie Pardington

Dr Colin Dunkley, Clinical lead for Epilepsy12
Rosemarie Pardington, Director of Integrated Care and Deputy Chief Executive of the charity Young Epilepsy

Data Science Making the connection: How ‘Big Data’ could improve care for young people with epilepsy

Date Published: March 22, 2023

Author: James Matejka

Dr Colin Dunkley is clinical lead for Epilepsy12 – a national project collecting data on epilepsy services for children and young people. Rosemarie Pardington is Director of Integrated Care and Deputy Chief Executive of the charity Young Epilepsy. Through the organisation, young people are helping decide what Epilepsy12 should focus on, and how changes to health services could be implemented. In this joint article, Rosemarie and Colin share how Epilepsy12 is helping improve the quality of care for children and young people.

Remember that feeling you get when tunnelling through sand at the beach? The sandcastles and holes are dug. Someone shouts, “Let’s make a tunnel!”. Digging continues, but now sideways and more carefully. One hand from one direction, one hand from another. A firm tunnel end eventually breaks through and is replaced by wriggling fingers… and a connection is made!

‘Big data analysis through artificial intelligence (AI) and machine learning’ is a Top Ten research priority identified by the UK epilepsy community during the UK Epilepsy Priority Setting Partnership (PSP), which was funded and led by Epilepsy Research UK. Clinical, communication, research, and audit projects are already collaboratively building structures in the digital landscape of ‘Big Data’. We are at a stage where we need to carefully dig together to enable better collective connections. Leaving information and databases that cannot, or will not, connect leads to a variety of challenges. There may be data which is incorrect, incomplete, or out of date, or there may even be inefficient duplication. No amount of human analysis or AI can create real sense from datasets that are obscured, compartmentalised, conflicted, incorrect, or incomplete. There are so many ways we can achieve these vital connections.

Here are a few of our stories about creating these links, and how we have created information flow and relationships that perform beyond the individual, service or platform, to map between datasets. We might call these ‘eloquent networks’.

The Royal College of Paediatrics and Child Health (RCPCH) Epilepsy12 Audit1 captured patient reported experience measures (PREMs) showing “those reporting ease of contact were 106 times more likely (than those not finding contact easy) to be satisfied with their epilepsy care.2 Video transfer platforms, virtual clinics, digital letters, care plans and passports are all based on emerging digital epilepsy care across settings. Bedfordshire, Luton and Milton Keynes Health and Care Partnership won the 2022 Health Service Journal ‘Using Data to Connect Services Award’ for their work building connected systems between clinical teams and children and young people with epilepsies behind the NHS App.3 Young Epilepsy is also working on a project to scale and extend these types of solutions and many others are doing pioneering work in this space.

However, not only do we need to be able to systematically map gathered PREMs, we also need to routinely collect PROMs (patient reported outcome measures) and other patient-sourced data to be truly clinically significant. We are moving beyond messages, forms, photos and videos towards seizure detection and other real-time streams of biometric information.

We recognise that the ‘big’ in ‘Big Data’ is only going to get bigger! Yet, we must ensure that throughout this growth, the voice of the person with epilepsy is maintained. We must do this not only to better inform their individual care but also to identify the gaps to enable us to harness the research still needed. This will allow us to better understand how that research should be undertaken and how to best engage with invited participants. We know this is important, as data can only truly improve the outcomes and treatment journey for each person if their views have been heard, considered and respected.

Using anonymised and collated clinical datasets, information gathered at the point of care could allow those with epilepsy to be more visible and analysable within NHS activity while also contributing to ongoing clinical care. What if every person with epilepsy could have the opportunity to consent to their ongoing clinical data being used anonymously and securely for appropriate epilepsy research purposes? What if research networks were also clinical networks, quality improvement networks and also patient networks? The possibilities of connection are endless.

In a different example, variations in early adult death from the Office of National Statistics (ONS) data and hospital admission rates for people with epilepsy from Hospital Episode Statistics (HES) were analysed against differences in service configuration for defined populations (a group of individuals who share a common characteristic). Reduced deaths were shown to be independently associated with paediatric services with effective paediatric neurology pathways for complex children; admissions were reduced in association with continuing epilepsy specialist nurse provision.4 What else can we determine by mapping population derived information from one data source against another? This leads to the question, “how could we collect, move and store ‘Big Data’ so that it can handle ‘big questions?’”. It makes you realise just having tunnels between our systems is a start but it isn’t the whole solution; we need the data itself to make sense across the system.

To this end, RCPCH is completing a project to support automated data flow between trust/health board health records and national audit platforms. This uses Application Programming Interfaces (APIs) to support connections between individual, local and national systems. In 2023, RCPCH has commenced work with the Professional Record Standards Body (PRSB) to co-create a UK open-source minimum core data standard for NHS health professional and patient-facing records which can ultimately be mandated and embedded across UK NHS adult and paediatric epilepsy digital systems. We need to work in partnership to decide what we should routinely record as a minimum for young people with epilepsy. By working together as an epilepsy community with charities like Epilepsy Research UK and Young Epilepsy, who put the voice of the child and young person at the centre, all of this is within our reach.

What and who would truly benefit from being connected? Where could this take us? The ‘hills’ and ‘holes’ for epilepsy data are growing… we need to be careful which ways we are digging.


  1. Royal College of Paediatrics and Child Health.
  2. Williams et al. A UK survey of the experience of service provision for children and young people with epilepsy. Seizure, 2018.
  4. Hargreaves D, Dunkley C, Cross JH et al. Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England: a national longitudinal data linkage study. The Lancet Child and Adolescent Health. 2019:3:1064-1070