The importance of public and patient involvement in identifying health research priorities is now more widely recognised, and research funding bodies actively seek the input of people affected by different medical conditions as equal partners. Here, we would like to update you on the work that has been done in the epilepsy field.

The process

In 2009-2010 a ‘master list’ of questions regarding epilepsy treatment was developed by epilepsy clinicians and researchers from the Wales Epilepsy Research Network (‘professionals’), in partnership with people with epilepsy and their carers (‘patient representatives’). The evidence surrounding these questions was then examined to see if they had been ‘answered’, and those that hadn’t (the majority) were grouped into themes and ranked in order of importance. Ranking was carried out separately by both professionals and patient representatives.Some areas, such as epilepsy and pregnancy, were found to be important to both groups; however, Dr Rhys Thomas (who was involved in the ranking) notes that questions specifically identified by patient representatives tended to be more pragmatic and practical.The outcome of the process was a list of epilepsy priorities – agreed by professionals and patient representatives – deemed worthy of further research attention, or official guidance.The top 12 questions/priority areas were:

  1. Cognitive drug side effects (e.g., ‘Do different epilepsy medications affect people differently? Are the problems reversible? Are certain people more likely to develop cognitive side effects, and can they be predicted?’)
  2. Public awareness (e.g., ‘What advice should be given to all schools about epilepsy, and how would this improve epilepsy control for schoolchildren? Can better education about epilepsy improve quality of life for people with epilepsy by reducing stigma?’)
  3. Mood side effects
  4. Prescribing in pregnancy
  5. Treatment of depression as a comorbidity
  6. Drug withdrawal
  7. Adherence
  8. In utero side effects
  9. Information and self-management
  10. Recognition and acknowledgement of side effects
  11. Management of side effects
  12. Presurgical choices

The work is published in the scientific journal JNNP, here.

Revisiting the priorities

In 2016, Dr Thomas and colleagues revisited these priorities to find out which had been answered, and whether the unanswered questions from professionals and patient representatives had received the same amount of research and guidance attention. Dr Thomas comments: “Of the top 20 questions, all those identified by the clinicians had been at least partially addressed by new research or guidance, compared with only 75% of patient representatives’ questions. Patient representatives’ priorities produced 46% as many scientific papers as those of clinicians, and they were addressed in 24% as many guidelines. This was surprising because, at face value, the patient representatives’ questions seemed more practical and readily answerable. Our 2009-2010 work was at the forefront of the James Lind Alliance priority setting partnerships, which many research charities have or plan to be engaged in.’The work is summarised in the ‘Letters’ section of JNNP, here.We want to make epilepsy researchers aware of these findings, in the hope that they, too, will revisit the priorities identified by patient representatives in 2009-2010.If you have any comments you’d like to share with us about the work, its limitations, or the priorities identified, please email us at here to read more about living with epilepsy.