Stage 2. Remove out-of-scope survey submissions

The PSP’s scope will have been defined in its Protocol. Scope may relate to the area of the disease, a particular type of patient, e.g. adults or children, or the type of uncertainties being addressed, e.g. whether questions around GP awareness or availability of support will fall within the scope. PSPs should keep a separate record of submissions which are out of scope and ensure members of the Steering Group including patients, carers and clinicians and their representatives, are happy with the decisions taken about which questions are in or out of scope prior to any interim prioritisation.

PSPs should have decided in advance what to do with submissions that fall out of scope of the PSP. Some PSPs have arranged with relevant organisations to pass them on and will have mentioned in the consent information in the survey that this was a possibility. For example, the Sight Loss and Vision PSP agreed to send submissions better suited to social research to a partner organisation that was interested in addressing these. The Dementia PSP removed submissions that had already been answered by research. These submissions showed that there was a need for better information sharing and awareness of the answers, and so they passed them to the Alzheimer’s Society communications team. The Scoliosis PSP decided to pass questions about cause to the British Scoliosis Research Foundation, which funds cause research, as the PSP’s scope did not include cause.

The Steering Group needs to give careful consideration to each response and whether it can be turned into a researchable question. Some responses may not need to be answered by research: for example, they may be questions seeking further information or advice on a topic, or issues around awareness. The Steering Group should decide whether these fall within scope of out of scope and what they will do with these responses. For instance, a PSP might pass these responses onto relevant charities to create frequently asked questions, or to inform their awareness raising activities.