Putting Epilepsy in English!
My name is Gareth1 and I am an epilepsy researcher at FutureNeuro, the SFI Research Centre for Chronic and Rare Neurological Diseases2, hosted by RCSI3 in Dublin, Ireland. Outside the lab I’m a big football fan and I’m unfortunate enough to support Tottenham Hotspur4. I am a firm believer in the value of strong communication and dialogue between researchers and people with epilepsy, and founded the "Epilepsy in English" blog5 to help this.
- Favourite food: Actually an impossible choice. They are all winners
- Favourite books: Brave New Worlds6, The Count of Monte Cristor7, and Ion Channels of Excitable Membranes8
- Favourite movie: The best one I’ve seen recently is probably The Imitation Game9
If you want to get in touch then I’m on Twitter and LinkedIn (links below), and I should mention that I’m currently funded by a Marie Skłodowska-Curie Actions Individual Fellowship10.
In the beginning
Imagine that you want to complete a very complicated jigsaw puzzle. Maybe it’s one of those ones with thousands of pieces where most of them are sky in the same shade of blue. You yourself are an expert in jigsaw puzzles but it’s just not possible to complete it alone, so you enlist the help of the world champion jigsaw puzzler. Now, according to the World Jigsaw Puzzle Championship’s 2019 rankings11, she happens to be from the Czech Republic. Let’s suppose for the purposes of this metaphor that you do not speak much Czech and she does not speak much English. The two of you are both experts and able to fit some pieces together, but the language barrier makes it challenging to communicate with each other and limits the overall progress towards completing the bigger picture of the jigsaw puzzle.
It’s kind of the same problem with epilepsy research. Research scientists, clinicians, and people with epilepsy are all experts in the condition. Each have different perspectives and bring different pieces to the wider jigsaw puzzle of effective epilepsy research. The difficulty, in my opinion, is enabling strong communication between the groups. And, like in our metaphor, a big part of this is due to language. When scientists and clinicians write research papers, we have to do it in a very particular way, using technical words and following strict ways of working. We have to write like this so that other scientists can reproduce and repeat our work, as being able to replicate an experiment is how we test if something is high quality science. However, this isn’t particularly helpful for most people with epilepsy who want to read about the research into their condition, but don’t necessarily know all of the technical terms. Likewise, as scientists we may have a good understanding of what’s going on inside the brain during a seizure12, but we don’t always know how seizures, and other aspects of epilepsy, affect people’s lives. It’s like the scientists, the clinicians, and the people with epilepsy are holding different pieces of the jigsaw puzzle, and we need to find ways to combine them.
This is where Epilepsy in English5 comes in. We founded this blog in 2019, with the goal of explaining cutting-edge epilepsy research papers in plain English, so that they are accessible to anybody who wants to read them. By cutting through the jargon and technical terminology, we aim to remove the language barrier of communicating research work to people with epilepsy.
However, this is just half of the problem - we also need to hear from you! One thing that I’ve learnt from talking to people with epilepsy, and their families, is that sometimes seizures are not actually their biggest concern. This came as a surprise to me as a scientist who was always focused only on trying to find treatments which reduce seizures. Through these conversations I learnt, for example, that memory loss can be problematic for people with epilepsy, or that people can experience mental health issues related to epilepsy. Because of this input, from people with epilepsy, we at FutureNeuro have been able to refine our research questions, to look for treatments which might also help with memory or mental health.
At FutureNeuro we are creating a ‘fully-engaged research model’. That means that, where possible, our research is people-centred and our studies are co-created by scientists, clinicians AND people with epilepsy. This is not people acting as participants in our studies or taking part in a clinical trial, it is people being involved at every stage of the project, from defining the initial research question to publishing papers in journals. This can be difficult when it comes to lab-based research but, through projects like Epilepsy in English, we are overcoming the communication barriers to enable people to contribute to research in a meaningful way.
Scientists, clinicians and people with epilepsy are all experts in the condition, but the groups are often holding different pieces of the puzzle and need to find ways to communicate and combine their expertise. By working together, we can design new treatments which truly address the needs of people with epilepsy.
We need to hear from you!
If you are a person with epilepsy who shares our dream for fully-engaged research, then please do get in touch with us and we would love to hear from you!
If you want to get involved, then contact us through Epilepsy in English (Twitter, Instagram), FutureNeuro (Twitter), or you can email info@epilepsysparks.com who'll pass you on tothe right person for more details about how you can engage with our research.
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