Background
- The International Bureau for Epilepsy (IBE) is conducting a global consultation to understand how Patient and Public Involvement (PPI) is currently practised in epilepsy research and healthcare.
- This initiative is led by IBE’s Community Council - an internal advisory board
- made up of people with lived experience of epilepsy and IBE chapter representatives from around the world.
- We want to learn how researchers, healthcare professionals, people with epilepsy, and families are working together around the world - and where better support, guidance, or culturally appropriate approaches are needed.
- Insights from this consultation will be used to develop a practical resource to encourage and guide meaningful involvement of people with epilepsy and their families, recognising that involvement looks different across countries, regions, and health systems.
Inclusion
- All researchers and healthcare professionals working in epilepsy
Details
- Method: Online survey
- Expected time:
- Researcher ONLY - 15-20 minutes
- Researcher AND healthcare professional - 30-40 minutes
- Responses with be anonymised & analysed with our Community Council
Links
Contact details:
Dr Claire Nolan: [email protected]
Dr Shivani Sharma: [email protected]
