Building a better future for people with epilepsy

Over 50 million people worldwide have epilepsy, creating challenges throughout their lives, from education and job prospects to friendships and family. 80-85% of those people live in low- to middle-income countries, where there are many technological and social barriers to accessing effective diagnosis and treatment. However, today’s reality for people with epilepsy does not need to be their future.

The Oxford Martin Programme on Global Epilepsy is trying to find solutions to improve diagnosis, understand and mitigate the social impact of the condition, and begin to build a better future for people with epilepsy – especially those in resource-poor settings.
The programme has a bold vision: a world where epilepsy is as manageable a disease as asthma, is as well supported and researched as heart attacks, and no longer has the damaging stigma that too often accompanies it today.

Envisioning the future of epilepsy

In an ideal world, when a person in a low- to middle-income country experiences a seizure this would be recognised as a medical problem by their friends and family. They would be taken to a local medical professional or healthcare worker who is trained to recognise and understand seizures and start the diagnostic pathway to discover the cause of the seizure.

The healthcare worker would call for the nearest mobile EEG machine - a medical testing device which measures and records brain activity - and it would be dispatched to their village or another suitable location nearby to enable the recording to occur promptly.

A special ‘decision support’ app on the healthcare worker’s mobile phone would help combine the EEG results, patient history and other diagnostic tests to determine if a preliminary diagnosis of epilepsy can be made. If it can, the patient would get medication immediately to manage the symptoms and arrangements would be made for them to see a neurologist as soon as possible.

Their family and community would recognise this person’s epilepsy as a medical problem, as they would with better-known conditions such as diabetes or asthma, and therefore treat them the same as any other person in the community. 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated, so with treatment and without social stigma they would go on to live a life like anyone else in their community.

This future for people with epilepsy is possible and within reach. A future where their lives are not without medical challenges and treatment but are without medical or social restrictions. However, to achieve this the barriers to diagnostic access, to treatment, and to equal and full participation in society need to be overcome.

“A person could have epilepsy, or diabetes or be left handed - it shouldn’t affect their chances in life!” - Ines Pont Sanchis Engineering Research Assistant, Oxford Martin Programme on Global Epilepsy

A case study: Zimbabwe

The Oxford Martin Programme on Global Epilepsy works with local teams in five countries, one of which is Zimbabwe. Zimbabwe has a population of approximately 15 million, of whom about 10 million live in rural settings. It is classified by the World Bank as a lower-middle-income country, meaning its GDP is not in the low-income category but is still at the low end of all middle-income countries. There are only six EEG machines in the country, most are in the capital city of Harare. Until a few years ago there was only one resident neurologist.

With the majority of the diagnostic facilities and medical professionals concentrated in Harare, there is a huge practical barrier to access to epilepsy treatment. Travelling to Harare from rural parts of Zimbabwe might mean a distance of up to 200 miles and can be long, difficult and expensive. It may also be treacherous for a person who is already unwell.

Arjune Sen

“When I landed in Zimbabwe a few years ago, I doubled the number of neurologists in the country.”
– Dr Arjune Sen, Head of the Oxford Epilepsy Research Group

In rural Zimbabwe and similar places around the world, improving the understanding of epilepsy amongst regional health practitioners will ease gaps in the diagnostic pathway. Improving access to EEG machines would also reduce a major barrier to diagnosis.

However, addressing the technological barriers will only have a limited effect if there are other, social barriers stopping people from seeking out treatment in the first place. A lack of understanding that epilepsy is a medical condition that can be treated by modern medicine is often the first hurdle faced by many people with epilepsy. Seizures can be confusing and frightening, both for the person experiencing them and for people witnessing them, especially if they don’t know what is happening and why. Seizures can sometimes be mistaken for signs of mental illness, or attributed to some supernatural cause.

Misconceptions about epilepsy, its causes and the belief that it might be contagious also have wider impacts on the lives of people with that condition. Children can be excluded from classrooms and adults can lose their jobs over fears that close contact with people with epilepsy may ‘infect’ others.

Add to this that epilepsy often presents with comorbidities and that seizures can often cause injuries, for example owing to the sudden falls that can occur during a seizure, and you see the network of compounding vulnerabilities faced by people with the condition. All of these areas – diagnosis, treatment and stigma – need to be addressed to create a world where people with epilepsy in Zimbabwe have as much opportunity as anyone else.

Reimagining an EEG

A crucial step in the diagnostic pathway for epilepsy and other seizure disorders is an electroencephalogram or EEG test.

Electrodes, consisting of small metal discs with thin wires, that are glued onto the scalp, can detect tiny electrical charges that result from the activity of brain cells. As such the EEG can detect abnormalities in the electrical activity of the brain.

The problem with traditional EEG machines is that they require many other products to be administered – gels, tapes, and pads are all single-use and take a long time to place. The data from the EEG is fed into an amplifier, which is connected to a computer. These devices are not portable and require a stable energy source.

The Oxford Martin Programme on Global Epilepsy is working to develop a wireless, lightweight and portable EEG that can be placed directly onto the patient’s head without needing pastes and the glueing of electrodes. The results of the EEG are streamed directly into a decision-support app on a mobile phone or tablet, without the need for heavy-duty computing systems or an amplifier.

The team has already developed a prototype of this portable EEG system. It is currently being field-tested by collaborators in Kenya, South Africa and India. The results will be compared against the gold-standard hospital EEG and, if all continues positively, they will begin the rollout to rural communities. This next stage will involve testing the performance of the headset in different levels of humidity, with different hair types, and in settings that have reduced access to electricity or water.

Once the programme has a successful prototype, it will begin working on how it can be introduced at scale. A crucial step will be ensuring the portable EEG is affordable to manufacture and deploy because one of the greatest barriers to medical treatment in resource-poor settings is cost.

Adobe Stock 385879009
© AdobeStock

A more traditional EEG

© Oxford Martin School

Ines Pont Sanchis displays the headset developed by the team

Listening to the lived experience of people with epilepsy

Dr Sloan Mahone, Associate Professor of the History of Medicine, discusses the ethnography and oral history work that is underpinning the Oxford Martin Programme on Global Epilepsy.

Joining the dots

The Oxford Martin Programme on Global Epilepsy may be in its early days, but it is already having a significant impact.

The programme’s partner teams in Kenya, Zimbabwe, India, South Africa and Brazil are its lifeblood, connecting researchers with communities and bringing their own contextual expertise to the programme. Partner teams have also begun forging direct links between these countries to share learnings and work together.

In the future, it is hoped that the programme will, through the help of external funders, be expanded into a dedicated epilepsy research hub, with this powerful combination of ethnographic study to support medical innovation as a founding principle. Such a hub would be a place for researchers to collaborate and embed best practice in research, which could help support targeted, practical and organised interventions on a global scale.

It must be acknowledged that, even in high-income countries, epilepsy is still a serious condition. Finding a treatment plan is still a process and even in resource privileged settings patients can experience stigma and restrictions due to their condition.

For now, the Global Epilepsy team welcome contact from researchers, health professionals, NGOs and especially governments who are interested in their work and would like to contribute to or learn from it. They are actively seeking like-minded partners who wish to help shape their future ambitions and improve the care of people with epilepsy, wherever they may happen to live.