Once you have submitted your research priorities, all feedback will be collated and analysed by our information specialist to determine what priorities are 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 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.

Once you have completed the survey, why not share it on Twitter and spread the word? Please click here.

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 these 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:

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 [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