Cystic fibrosis research priorities refresh Engagement Summary

Gathering uncertainties

Methods used (eg, survey, focus groups, interviews):

Online survey which asked respondents to identify which of the previous top twenty they thought were still priorities (asked to select their top three). The results were ranked and the most voted fifteen priorities were taken through to interim prioritisation (n = 15)

Respondents could then submit an additional two new questions.

	Number	%
Total respondents (across all methods)	1370	100
Total patients and carers	1008	74
Total health and care professionals	362	26
Total number of original uncertainties submitted	971	100
Original uncertainties in scope	821	85
Original uncertainties out of scope	150	15

Interim prioritisation

Methods used (eg, survey, focus groups, interviews:

data were analysed by two researchers to group uncertainties and categorise into indicative questions. These were sense checked by the management group, steering group and members of the multidisciplinary team.

The list of indicative questions went out as a second survey and included the top 15 from the original PSP.

	Number	%
Total number of indicative questions (answered & unanswered)	74*	100
Number of verified answered questions	3	4
Number of verified unanswered questions	71	96
Number of verified unanswered questions included in the interim prioritisation	71
Total respondents (across all methods)	1417	100
Total patients and carers	999	71
Total health and care professionals	418	29
Number of questions taken to final workshop	17

Final priority setting workshop

	Number	%
Total participants	22	100
Total patients and carers	11	50
Total healthcare professionals	11	50

Notes:

*This includes newly submitted questions and the top 15 from the previous PSP