Most PSPs develop a survey questionnaire (electronic and paper-based) to gather uncertainties. This is usually promoted widely by the PSP, including by partners distributing 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, or how it can meet the needs of both clinicians and patients.
Examples of questionnaires used can be seen in the Key Documents sections of many of the PSPs on the JLA website including for the Anaesthesia and Perioperative Care PSP, Heart Failure PSP, Parkinson’s PSP, Post Mastectomy Breast Reconstruction (Canada) PSP, Adult Social Work PSP, Broken Bones in Older People PSP, Stroke PSP, and the Physiotherapy PSP.
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
- time is allowed for members of the Steering Group to pilot the survey with a small number of patient and clinician contacts, to check whether potential respondents would understand what they needed to do just by reading the instructions (without help from the people arranging to pilot the survey).
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’ but that they are simply encouraged to write about what is important to them.
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 demographic information from respondents is for this purpose only and will not be part of the later analysis of the data. The number of demographic questions asked should therefore be kept to a minimum as too many can be off-putting. Surveys may also ask respondents whether they are interested in taking part in the prioritisation stages of the PSP by either completing the interim survey or potentially taking part in the priority setting workshop. Personal information needs be stored securely, and the PSP is responsible for complying with data protection regulations. The Heart Surgery PSP published a privacy notice to make it clear what would happen with data.
Translation of surveys may be one way of accessing diverse communities. In practice however, few JLA PSPs have used this as a method. A more pragmatic solution may be to work with key members of communities, through existing networks, including the community and voluntary sector organisations, to understand the best way of reaching people and mechanisms available to do that. These may include a talk at an existing meeting, or place of worship, or a session on the local radio station.