Gathering uncertainties
Methods used (eg survey, focus groups, interviews)
The first survey was available on the UK Epilepsy Priority Setting Partnership (PSP) microsite, which outlined the rationale, methods and timeline of the project, as well as highlighting those involved (i.e. Steering Group and collaborating charities/organisations). This was hosted on Epilepsy Research UK’s main website for just over 4 months – launched on Thursday 18th November 2021 and closed on Thursday 24th February 2022.
After introducing the UK Epilepsy PSP, the purpose of the first survey and its privacy policy (including the anonymity of responses), respondents were asked to provide up to three of their top priorities for research into epilepsy within three free-text boxes (max. 280 characters). These responses could take various forms, including questions, anecdotes or statements. Once the survey closed, they would be categorised, grouped and translated into numerous, distinct research questions – as outlined in the ‘What Happens Next?’ information provided at the end of the survey. Moreover, participants could also sign up to a dedicated UK Epilepsy PSP mailing list, which provided project updates and details of the next steps.
After providing their priorities, participants were asked the following optional demographic questions:
Q1: Which of the following best describes you?
Q2: People with epilepsy and carers, if you know the type of epilepsy you or the person you care for has, please specify.
Q3: Healthcare professionals, which of the following best describes you?
Q4: We want to ensure that we are reaching people from across the UK. Where do you live? Please provide the first half of your postcode.
Q5: Gender
Q6: Ethnicity
Q7: Age
Q8: Where did you hear about the survey?
| Responders and uncertainties | Number | Percentage |
|---|---|---|
| Total respondents (across all methods) | 2014 | 100 |
| Total responses to first survey, Q1: Which of the following best describes you? | 2359 | 100 |
| Total people with epilepsy | 1081 | 45.82 |
| Total parents, family, friends, carers and those bereaved | 849 | 35.99 |
| Total health and care professionals | 271 | 11.49 |
| Total epilepsy charity and organisation representatives | 74 | 3.14 |
| Other | 79 | 3.35 |
| Prefer not to say | 5 | 0.21 |
| Total number of original uncertainties submitted | 5418 | 100 |
| Original uncertainties in scope | 4925 | 90.90 |
| Original uncertainties out of scope | 493 | 9.10 |
Interim prioritisation
Methods used (eg survey, focus groups, interviews)
As with the first survey, the second, shortlisting survey was available on the UK Epilepsy PSP microsite, which outlined the rationale, methods and next steps of the project, as well as those involved (i.e. Steering Group and collaborating charities/organisations). This was hosted on Epilepsy Research UK’s main website for just over 4 weeks – launched Wednesday 3rd August 2022 and closed on Monday 5th September 2022.
The 57 research uncertainties* (i.e. questions “partially answered” or “unanswered” by the existing research literature) identified by the evidence check were prioritised by the UK epilepsy and associated condition community, who were asked to choose a maximum of 40 questions from the 57 research uncertainties available. They were then asked to refine this selection further, choosing a maximum of 10 questions to prioritise.
As before, several demographic questions were asked, remaining largely optional, along with an explanation of their purpose to encourage participants to voluntarily provide this personal information. The only change made was to the first demographic question (Q1: Which of the following best describes you?), which was made compulsory and its selection limited to one option per response. This was to ensure that the priorities of people affected by and working in epilepsy, as defined in the shortlisting survey, were reflected equally in the questions shortlisted for discussion at the UK Epilepsy PSP Workshop. Participants who selected ‘Other’ and specified their relationship with epilepsy in the free-text box were considered on a case-by-case basis and assigned to the most relevant, pre-defined stakeholder category.
| Responders and uncertainties | Number | Percentage |
|---|---|---|
| Total number of indicative questions (answered & unanswered) | 97 | 100 |
| Number of verified answered questions | 8 | 8.25 |
| Number of verified partially answered questions | 35 | 36.08 |
| Number of verified unanswered questions | 54 | 55.67 |
| Number of verified partially answered and unanswered questions included in the interim prioritisation | 57 | Not Applicable |
| Total respondents (across all methods) | 2798 | 100 |
| Total people with epilepsy | 1560 | 55.75 |
| Total parents, family, friends, carers and those bereaved | 1011 | 36.13 |
| Total health and care professionals | 182 | 6.50 |
| Total epilepsy or associated condition charity/organisation rep. | 45 | 1.61 |
| Number of questions taken to final workshop | 25 | Not applicable |
Final priority setting workshop
| Participants | Number | Percentage |
|---|---|---|
| Total participants | 27 | 100 |
| Total patients and carers | 14 | 51.85 |
| Total health and care professionals | 13 | 48.15 |
Notes
Initial Survey: the number of responses to Question 1: Which of the following best describes you? in the first survey [2359] is higher than the total number of responses received [2014] as the number of options the participants could select was unlimited, allowing those wearing ‘multiple hats’ (e.g. healthcare professional and parent of someone with epilepsy) to be accurately reflected in their survey response.
Interim prioritisation: Due to constraints and considering ease of use, as well as completion time, only 57 of the 89 questions identified as partially answered or unanswered were included in the shortlisting survey. Unless advocated for by the Steering Group, questions informed by 5 or fewer priorities were excluded.