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Reimagining epilepsy research and healthcare 

Dr James Pickett

Dr James Pickett

ERUK Director of Research & Innovation

- ERUK Change Makers Series

Date Published: July 1, 2020

Author: James Matejka

This month on the ERUK Research Blog we are shining a light on the ‘change makers’ of epilepsy research – past and present, whose research has changed or is helping to change epilepsy healthcare, policy and practice.

To launch this series, ERUK Director of Research and Innovation Dr James Pickett discusses the impact of COVID-19 on our research, and brings us the exciting news of an ERUK urgent funding call launching today which will provide researchers and clinicians the opportunity to bring about real change. The call will help us to understand how epilepsy healthcare is changing because of the pandemic and aims to improve health services for people affected by epilepsy.

It’s just over three months now since the UK went into lockdown and all aspects of life changed. Research into epilepsy was no different, with ERUK funded research programmes needing to continue remotely. Universities are now starting to take small steps towards reopening. We are learning of novel ways of working coming into practice; for instance, researchers will start working early and late shift patterns to minimise contact and allow social distancing to be followed.

As researchers are returning to work, they are reimagining how research could be done. During the height of this pandemic, research on coronavirus was conducted and published at a pace never seen before. Most remarkable was the achievement that a UK-wide clinical trial was set up, delivered and discovered a new treatment for coronavirus within three months; a process which often can take five years. Imagine if this could become the new normal for research?

We are just at the beginning of restarting research, but satisfyingly the great research machinery that will deliver new knowledge, treatments, and diagnostic tests is being switched back on.

What’s happening to epilepsy healthcare?

Epilepsy care and treatment has also been heavily impacted. Access to diagnostic clinics for people experiencing their first seizures have been postponed as well as cancellations of diagnostic tests such as neuroimaging or EEG. People have had epilepsy surgery delayed, many face-to-face clinical consultations were moved to the telephone or online, and there have been changes in the ways that social support and community groups for people with epilepsy are delivered.

Prior to coronavirus, a common complaint about the healthcare system was that it can be slow to adapt or adopt new innovations that could benefit people. The pandemic has shown that services can be rapidly changed. As a chief technology officer of one hospital was quoted in saying, they’d seen more digital transformation in three weeks than they had seen in the previous five years.

Whilst some services such as surgery for refractory epilepsy need to be resumed as soon as possible, the pandemic has forced things to be delivered in different ways and some things may have changed for the better. For instance, for some people it is more convenient to be able to have a consultation on the phone or online from their own home than travelling to clinics.

How is ERUK responding?

Today we are launching an urgent call for research proposals that help understand what is working in the new ways that care is being delivered, and for who its working best. We are inviting research teams who are doing things differently to apply to ERUK for research grants up to £50,000, to allow them to test and evaluate new ways of delivering services and care. During the pandemic, many people will have tried something new in the management of their epilepsy, and this funding is to help the good stuff stick.

Central to what we want to see is thinking about how epilepsy care and support can be tailored for each person with epilepsy. We also want to recognise that while something may work for one group of people, epilepsy affects children, adults and people with many other coexisting conditions, so any given new approach may not work for all.

We are delighted to welcome Epilepsy Action as a partner in this call, who will co-fund some of the research with us and help ensure that the results of the funded research will improve health services through policy work.

We are also challenging ourselves to do some things differently as well. Last week, we published a blog about public and patient involvement, which is the recognition that people with epilepsy can play a greater role in designing and influencing healthcare. We will work to develop this throughout this funding programme, so that the knowledge, expertise, and views of people with lived experience of epilepsy are considered. We are also planning to award the successful grants in September which, taking a lesson from the last few months, is at a much faster pace than funding often takes to be awarded.

Coronavirus has caused immeasurable change to our society and economy. There are many long-term questions and serious concerns, but today I want to finish with the thought that this pandemic could be the catalyst of some change which can drive improvements in epilepsy research and healthcare.

The Innovations in Healthcare urgent research call is open for applications until 12th August. For further details click here.

-Dr James Pickett

Keep an eye on the ERUK Research Blog this month as we hear from ERUK Change Makers – researchers and clinicians who have helped change healthcare, policy and practice.

Related blogposts:

Digital Doctor: How clinical research is possible despite Covid-19

What Is Patient Public Involvement (PPI) And Why Is It Essential?