As we move through the first year of the EpiSafe research programme, we’re excited to share the progress we've made in Patient and Public Involvement and Engagement (PPIE). This year has focused on laying a strong foundation to ensure that the voices of women with epilepsy are central to shaping the EpiSafe research. Our PPIE efforts focus on a three-tiered approach: leadership and embedding best practices, an Advisory Group providing lived experience, and wider community engagement.
Highlights from the Past Year
The past year has been marked by several key activities to establish PPIE. In September 2023, we formed the EpiSafe PPIE Advisory Group, bringing together 10 women with lived experience of epilepsy during pregnancy from across the UK. We introduced them to the research, laying the groundwork for building long-term relationships and ensuring their ongoing involvement. Since then, through meetings and individual follow-ups, we've gathered invaluable insights into their needs and challenges, which continue to shape the EpiSafe research intervention, study materials, and overall direction.
What’s Next?
We are thrilled to share our first PPIE Newsletter, which provides a detailed overview of these activities and more. It also outlines our plans for the coming months, including broader engagement efforts and upcoming in-person meetings.
For more information and to stay updated, visit our website (https://www.episafe.org/), follow us on Twitter (@EpiSafeUK) or contact us directly at episafe@contacts.bham.ac.uk.
