Understanding and preventing UK epilepsy health inequalities

Dr Kathryn Bush is public health registrar and neurologist based at Newcastle University. Dr Bush was awarded an Epilepsy Research UK Emerging Leader Fellowship in 2022. Kathryn’s fellowship project will bring together the worlds of neurology and public health to investigate epilepsy and use Big Data to make reducing epilepsy inequalities a healthcare priority. 

The late Desmond Tutu once said “There comes a point where we need to stop just pulling people out of the river. We must go upstream and find out why they’re falling in.” This perfectly illustrates the approach we must take for epilepsy. Too many people have been living with the devastating consequences for epilepsy, for too long. Through this project we will “go upstream” and see how we can prevent epilepsy inequalities, and importantly, prevent epilepsy-related deaths. But how will we achieve this? The answer may lie in Big Data and population health.

What is population health and what are health inequalities?

Population health is the study of the health of whole populations or groups of people. It considers the many factors that contribute to health (not just diseases), including social factors, employment, educational opportunities, access to healthcare, food, and where and how people live their lives. Health inequalities are systematic, unfair, unjust and avoidable differences in people’s health, across populations, or between different groups of people.

How are people with epilepsy affected by health inequalities in the UK?

There are two major health inequalities which are known to affect people with epilepsy at this time in the UK from previous research:

• People with epilepsy in the UK live shorter lives compared to the general population.
• People who live in the most deprived areas of the UK are twice as likely to have epilepsy as those who live in the least deprived areas.

At the moment we don’t fully understand why these inequalities occur. This research aims to use existing population data to explore these differences in detail. We will then examine what is underlying the differences by looking at the causes of epilepsy in the UK and the causes of death in people with epilepsy.

How will your Emerging Leader Fellowship Award investigate this?

We will analyse routinely collected population level health data from across the United Kingdom to explore the causes of epilepsy and epilepsy deaths.

This data already exists and is collected across Wales, Scotland and England. Importantly, the health data can be linked to other data sources, including death certificate data, prescription data, area levels of socio-economic deprivation and Welsh census data. Using the data sets that have been linked together helps us to build up a detailed picture of epilepsy in the UK, what is causing it, who it affects and how.

Why is this research important?

We want to change the way that epilepsy is thought about by the public, , healthcare professionals and policymakers.

Once we have a clear picture of what is causing people’s epilepsy and the deaths of people with epilepsy, we can start to consider epilepsy from a new and important public health perspective:

• We want to know which cases of epilepsy, and which deaths, were potentially preventable at a population level.
• We can then start to think about what could be done to try and prevent cases of epilepsy and what can be done to try and avoid people with epilepsy living shorter lives.
• The research will allow us to identify specific groups of people, where interventions could be targeted.
• We will then work with people with epilepsy to understand what types of interventions could be appropriate and be adapted into their lives or their healthcare.
• The final stage of the research will include computer ‘modelling’ of the interventions we propose in the data-sets, to predict which interventions would have the biggest impact.

How can we achieve the biggest impact for people with epilepsy across the UK?

To improve health at a population level we need to carefully consider the best ways to bring about widespread change.

The results of this work will be used to bring epilepsy to the attention of those who make decisions about health policies and strategies in the UK. We will use the results to influence the care of people with epilepsy, to reduce inequalities and improve population health. This project will aim to raise the profile of epilepsy in the UK and make reducing epilepsy inequalities a healthcare priority.