Identifying patients’ and carers’ views
1. SIGN literature search
SIGN has developed a literature search that is used to identify published studies, both qualitative and quantitative, that reflect patients' and carers' experiences and preferences in relation to the clinical topic. The types of studies identified tend to include patients' and carers' views on:
2. Patient organisations
SIGN writes to the organisations and charities that represent and/or support patients and carers before the first meeting of the guideline development group, asking them which issues they think the guideline should address. A form is supplied to facilitate structure feedback and asks for the source(s) of their suggestions (e.g. telephone help line data, surveys) to be identified.
3. Other NHS organisations
SIGN writes to other NHS organisations (e.g. NICE and the NHS Board Designated Directors for Public Involvement) and individuals to find out if any local research on patient views has been performed. This might include, for example, patient focus groups to help in the redesign of services, or questionnaire studies to gauge levels of patient satisfaction with existing services.
4. Direct feedback from service users
Where published evidence is scarce and inadequate feedback from patient organisations
has been received, patient and carer views may be sought via direct contact
with users of the service. This has been achieved using focus groups with patients
in different regions of Scotland, attendance of SIGN staff at patient support
group meetings, and SIGN organised meetings for patients and carers.
The information obtained from these approaches is fed back directly to guideline groups to influence the key questions underpinning the guideline.