LET’S DRIVE CHANGE

The UK Epilepsy Priority Setting Partnership (PSP) is a national survey collating the views of the entire UK epilepsy community. We are seeking the input of all those working in epilepsy and all those affected by epilepsy, including families, friends, carers and those bereaved by epilepsy. This is a unique opportunity for you to have your say in driving and shaping the future of research.

WHAT IS THE UK EPILEPSY PSP?

Have you ever wondered why research on an area of epilepsy that affects you has not been a priority? Have you ever wondered how you could draw attention to this? Have you ever wondered how your opinion could make a difference?

If any of the above has occurred to you (or even if it hasn’t) then we want to hear from you. This national survey will collate the views of the entire epilepsy community – healthcare professionals, epilepsy charities, people affected by epilepsy, their families, friends and carers, and those bereaved by epilepsy. The information gathered will help identify and prioritise areas of healthcare that can be improved by research and result in higher quality studies and increased investment.

READ MORE

WHY IS THIS THE MOST IMPORTANT SURVEY YOU WILL EVER COMPLETE?

It is time for change. Inequalities in research funding have meant progress for epilepsy has been slow. If we want to drive more investment, we must do as other health conditions have done, and provide clearly evidenced priorities to effect change. Your priorities will enable us to:

  • Carry out clinical research that matters most to people affected by epilepsy
  • Fund research based on evidenced priorities
  • Drive collaborations with associated condition charities
  • Generate the evidence needed to influence government and institutional funders to give us our fair share

If we don’t act now, innovations in the diagnosis and treatment of epilepsy will continue to lag behind other conditions. And that is why this is the most important survey you’ll ever complete.

READ MORE

TAKE THE SURVEY

Epilepsy affects everyone differently – we want to know what YOU consider to be the top priorities for research into epilepsy. When you complete this survey, you will shape the future of epilepsy research and drive positive change in the lives of people affected by epilepsy. We need your help to:

  • Identify areas where a need for more research exists
  • Ensure that the research we fund is directed by, and essential to, people affected by epilepsy
  • Provide indisputable, conclusive evidence to help drive greater research investment for epilepsy

Please join us. Let’s drive change.

TAKE THE SURVEY

WHAT HAPPENS NEXT?

Submitted research priorities will be collated and analysed by our information specialists to determine the areas of epilepsy currently unanswered by research. This process will involve:

  • Reviewing the research priorities of people affected by epilepsy
  • Interpreting their priorities into research questions
  • Sorting these research questions into themes
  • Determining whether each question has or has not already been answered by research

Once the priorities currently unanswered by research have been identified, there will be an interim survey, where people affected by epilepsy will shortlist their research priorities. This shortlist will be discussed in a Priority Setting Workshop and will influence the final Top 10 priorities of the UK Epilepsy PSP.

READ MORE
TAKE THE SURVEY

QUESTIONS?

DOWNLOAD OUR FAQS SHEET

Please contact Anna, Research & Involvement Officer, at [email protected] to request any of the following:

  • The survey in a different language
  • The survey in a different format (eg, paper copy or braille)
  • If you prefer to dictate your answers to the survey over the phone – a member of the Epilepsy Research UK team will assist