A word picture with UK Epilepsy PSP highlighted in its centre


All survey responses are currently being collated and analysed by the UK Epilepsy PSP team to determine what priorities are currently unanswered by research.

This process involves:

  • Reviewing the research priorities of people affected by epilepsy
  • Interpreting their priorities into research questions
  • Sorting these research questions into themes
  • Determining whether these questions have already been answered by research

If the question has not been answered by research, it will be included in the interim survey for shortlisting. If the question has been answered by research, it will not be included in the interim survey for shortlisting but will instead be saved in a separate document and followed up once the PSP is completed.

Interim Survey

Once the priorities currently unanswered by research have been identified, there will be an interim survey in which the epilepsy community will then be asked to shortlist the unanswered priorities. The shortlist will then be discussed in the Priority Setting Workshop and will influence the final Top 10 priorities of the UK Epilepsy PSP.

As with the initial survey, this interim survey should be completed by:

  • People with epilepsy
  • Carers, family members and friends of someone with epilepsy
  • Bereaved carers, family members and friends of someone who had epilepsy
  • Healthcare professionals consulting, treating, and caring for people with epilepsy
  • Organisations representing people affected by epilepsy

We would be grateful if those who submitted their priorities in this initial survey could be involved during the interim, shortlisting survey.

If you would like to be involved in the interim survey but have not yet provided contact details, please do so here:

We would like to reassure you, we will never share your data. You can read our Privacy Policy here.

Priority Setting Workshop

Once the list of unanswered research priorities has been shortlisted, the final priority setting takes place in the form of a Priority Setting Workshop. This is where the final Top 10 priorities are decided.

The final Priority Setting Workshop will invite a maximum of 30 individuals affected by epilepsy – either personally or professionally. Equal representation of the whole epilepsy community – clinicians, carers and people with epilepsy – is required, and the Steering Group will be involved in the recruitment and selection of individuals for the workshop.  Observers can also be present at the workshop, but they will not be involved in the final priority setting.

For more information about the Priority Setting Workshop, please see here.

You can see a complete timeline of the JLA Priority Setting Partnership process here.

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

  • This content in a different language
  • This content in a different format (eg, paper copy or braille)
  • To speak to a member of the Epilepsy Research UK team about the UK Epilepsy PSP