Most PSPs develop a survey questionnaire (electronic and paper-based) which partners distribute to their members and other interested parties. The Steering Group needs to consider how the survey can meet the needs of specific participants. This might include: those at a different stage of illness, such as acute or long term; or participants of a particular age, for example children or adults.
Examples of questionnaires used can be seen in the Key Documents sections of many of the PSPs on the JLA website including:
It is important to ensure that:
- information and surveys are clearly written, in language accessible to all, regardless of how familiar they are with medical terminology
- participation can take place electronically or by post (freepost if possible)
- responses are confidential.
The questionnaire will reflect the scope of a PSP and the answers that are required. Questions are usually deliberately open-ended to encourage full responses about the experience of patients, carers and clinicians. It is important that people who do not know about research feel comfortable contributing their ideas, hence the JLA does not suggest asking people for ‘research questions’.
Surveys usually also ask for additional information about the respondents, such as age group, location and type of health professional. While the survey is open, this information helps the Steering Group to monitor the range of respondent types, and target their publicity towards any under-represented groups. Steering Groups should note that the collection of demographics is for this purpose only, and will not be part of the later analyses of the data. The number of demographic questions asked should therefore be kept to a minimum as too many can be off-putting.
Personal information needs be stored securely and the PSP is responsible for complying with the Data Protection Act.