ICTALS 2019: an epilepsy research conference with the patient perspective at its heart


The International Conference for Technology and Analysis of Seizures (ICTALS) 2019 conference earlier this month brought together neurologists, neuroscientists, researchers from quantitative disciplines and people with lived experience of epilepsy in order to work as a community to advance our understanding of epilepsy and develop practical ways to improve diagnosis and treatment.

The voices and perspectives of people with lived experience of epilepsy and their carers was present right from when we started planning the conference; they advised on conference structure and suggested there be a ‘safe and quiet space’ at the conference. The conference itself was open to people with lived experience, and advertisement was done through our local networks and our charity partners Epilepsy Research UK and Epilepsy Action. To aid in making the science accessible to the general public, we set up a buddy system, where appointed researchers from our group were on hand during the refreshment breaks to answer any questions that may have come up from the talks. Epilepsy Action also had a dedicated ‘Coffee and chat’ room which served as the ‘safe space’ where everyone was welcome to talk and rest away from the main sessions of the conference, and learn more about the charity’s activities and services.

On the first day of the conference, there was an entire session dedicated to testimonies from people with lived experience of epilepsy. The five speakers delivered honest, powerful and inspiring presentations explaining how epilepsy has impacted their lives, including the often-overlooked perspective of carers.

Here is what our speakers had to say about their experience of attending and presenting at ICTALS:

The experience was terrifying but having done it I feel immensely proud of myself. It is essential that those at the top understand what living with epilepsy is really about and what matters to those of us with the diagnosis and those caring for us. ICTALS gave us a loud voice to do this

Lottie Pagram

We were very pleased to be asked to share our story at ICTALS. We’ve been on our journey together for 34 years as a patient and carer and it was such a great opportunity for us to show clinicians and researchers how our lives have been impacted by epilepsy and seizures. We hope our lived experience testimony was helpful to the audience, if only to re-enforce the reasons why they strive to improve the lives of others. We’re also very happy to answer questions or provide further lived experience details.

Neil and Hannah Parker

Attending the ICTALS conference was a real eye opener for me, and I think for all of us, as to quite how much research there is. It’s quite well accepted that epilepsy can be a lonely and isolating condition so it stands to reason that we often feel that we are somewhat ignored, that there isn’t enough research, or enough new research going on. For that reason, seeing so many people from all across the world who are, for their own reasons, passionate about finding new and better treatments, improved outcomes and faster diagnosis really gives us hope that things will be better in the future. Being able to be a small part of that event allowed us to feel that we are being taken seriously, our stories do matter and that the scientific community has not given up on us.

Simon Privett (Twitter: @Mavs1982)

To both attend and speak at the ICTALS 2019 event was professionally, intellectually, and emotionally stimulating! With such a wide range of professionals from around the world who work in the epileptology field sharing their research, findings, and realistic hopes for the future regarding the treatment of epilepsy, it gave both myself and so many others affected by epilepsy directly; hope. I thank attendees for being so inviting and truly interested in the personal stories of those with the diagnosis. The questions and answers from the Epileptologists, Neurologists, Scientists, Researchers, Mathematicians and more, were brilliant, as was it to chat and learn from so many of them over the four days of the conference. It was a great mix of professional as well as social activities and superbly managed by those in charge. I look forward to the next conference.

Torie Robinson (Twitter:  @TorieRobinson10)

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