Cardiomyopathy PSP engagement summary

Gathering uncertainties

Methods used (eg survey, focus groups, interviews)

Survey

Responders and uncertainties	Number	Percentage
Total respondents (across all methods)	1020	100
Total patients and carers	785	77
Total health and care professionals	173	17
Total number of original uncertainties submitted	2281	100
Original uncertainties in scope	1528	67
Original uncertainties out of scope	753	33

Interim prioritisation

Methods used (eg survey, focus groups, interviews)

Survey

Responders and uncertainties	Number	Percentage
Total number of indicative questions (answered & unanswered)	63	100
Number of verified answered questions	0	0
Number of verified unanswered questions	63	100
Number of verified unanswered questions included in the interim prioritisation	63	Not applicable
Total respondents (across all methods)	660	100
Total patients and carers	535	81
Total health and care professionals	91	14
Number of questions taken to final workshop	26	Not applicable

Final priority setting workshop

Participants	Number	Percentage
Total participants	31	100
Total patients and carers	15	48
Total health and care professionals	16	52

Notes:

Categorisation of respondents: For both surveys, gathering uncertainties and interim prioritisation, the same questions were asked to gather information about how the respondent was affected by cardiomyopathy. The totals do not equal 100%, as in both surveys, a number of people did not provide this data. It was also possible for respondents to select multiple categories – they may be a health care professional and a patient or carer, and multiple categories of patient and carer too. For clarity within this data, and to minimise duplication in the data, if the respondent has selected health care professional they are included solely in that category.

Gathering uncertainties: Effort was put into trying to arrange discussion groups for both youth (18-25) and ethnic minorities, however due to low numbers of people engaged these did not go ahead, and those due to attend were encouraged to complete the survey instead.

Workshop attendees: 1 participant fell into both categories, so in line with the approach to the surveys, they have been included in health care professional only for the purpose of this summary.