All the P’s – Participating in parent priority projects and priority setting partnerships – parents informing research

Our Trustee Jenny Rawling writes

Wearing my trustee and parent ‘hats’ I’ve had the privilege of taking part in two workshops this week that aim to hear the voices of all those affected by epilepsy in order to inform research priorities. The first was hosted by the James Lind Alliance and British Paediatric Neurology Association and took place in London, as the culmination of a process in which any interested parties were invited to submit questions unanswered by the current evidence base in childhood neurology. These have been refined by an expert panel and resubmitted to the public to decide which were most important, then presented to a workshop group consisting of doctors, allied health professionals (e.g. child physiotherapists and speech therapists) charity representatives, parent-carers and affected young adults. It was a fascinating process to repeatedly rank the suggestions in small groups and hear the voices of different people about what was important to them, then combine the results and reconsider them. Over the course of a day we came up with a ‘top 10’ priorities which will be published in due course and hopefully will inform research proposals. More about James Lind Policy Setting here


The second workshop was as part of the BEE study (brain development in early epilepsy) which again through it’s parent priority project has sought the views of parents with experience of early onset (before 3 years old) epilepsy on how it has subsequently affected family life. The study, which is now recruiting infants under 10 months old with a diagnosis of infantile spasms or focal epilepsy, will examine early development and look for any markers of subsequent developmental issues, for example autism. This focus group allowed parents to express how early onset epilepsy had affected them and what priorities they would choose for future research. More information on the BEE study here