End of Year Appeal: reflecting on a patient involvement activity

Written by Dr Yun Huang and Dr Claire Hetherington, University of Liverpool

Our project and why PPIE is important

We are Yun, an NIHR Academic Clinical Lecturer in Neurology, and Claire, a Postdoctoral Research Associate. We work in the Brain Infection and Inflammation Lab at the University of Liverpool.

Our research interest is seizures in patients with autoimmune encephalitis. In this project, we are developing a new laboratory model of seizures using cells grown in the lab. This model will allow us to test different drugs to see whether they can reduce or stop seizures. Our aim is for this work to support future clinical trials and bring new treatment options closer to patients who need them.

Right from the beginning, we wanted people with lived experience of seizures in autoimmune encephalitis to help us shape this project. Their insights are vital in guiding our research questions and ensuring our work stays focused on what matters most to patients.

How Encephalitis International supported us

We approached Encephalitis International (EI) because of our positive experiences working with them on previous projects. They have the expertise and reach to connect us with people from a wide range of backgrounds who reflect the community we hope to help.

From our very first conversation, Emma (EI’s PPI Manager) and her colleague Alina were incredibly supportive. As this was our first experience of organising a PPIE meeting, their guidance was invaluable. They provided us with a clear form to help define the purpose of the meeting, the types of participants we hoped to involve, and what we wanted to achieve. A follow-up discussion then helped us refine our aims and prepare effectively.

Importantly, Emma and the EI team managed all the logistics: inviting participants, sharing questions in advance, and setting up the meeting itself. This took a huge weight off our shoulders and allowed us to focus on listening and learning.

How the PPIE session went

The meeting itself went very smoothly. Emma coordinated everything on the day, ensuring the discussion stayed on track and offering helpful prompts when needed. The session was recorded, and afterwards EI provided detailed notes and insightful quotes that captured the key points.

Feedback from participants was very positive. Many appreciated the chance to share their own experiences and hear from others. For us as researchers, it was invaluable to learn directly from people living with autoimmune encephalitis and seizures.

Looking ahead

The insights from this first PPIE meeting have already shaped our grant application for this project. They demonstrate to funders that our translational research is designed with patients at its heart.

We have also applied for funding to support further PPIE activities. Our plan is to hold regular focus groups throughout the project so that people with lived experience can continue to guide our work, provide feedback, and help us share our findings with the wider community.

We are at a critical moment to invest in encephalitis research. In the first ever Technical Brief on encephalitis (funded by Encephalitis International), the WHO describes encephalitis as a: “growing global threat” and “an urgent public health imperative.”

Cases are rising. New autoimmune types continue to be discovered, and infectious causes continue to spread. Enabling research pioneers to connect with patients – the experts by experience – can save lives and rebuild futures.

Your donation will help connect research pioneers with the people who know encephalitis best – the patients themselves.

Click HERE to donate today to support life-saving encephalitis research.