Chapter 8: Interim priority setting
An exercise to gather treatment uncertainties for prioritisation can yield a large amount of information. The most practical approach is to initially shortlist the uncertainties, in an interim priority setting exercise, and then to proceed to a final priority setting workshop.
The Steering Group should agree the number of questions that they think is appropriate to send to people in a survey for this interim priority setting exercise. The JLA Adviser can help with this decision. Generally, from experience, a maximum of around 80 questions is suggested, but depending on the nature of the stakeholder group being consulted, a Steering Group may decide that fewer, or even slightly more, will work.
Instructions for the survey should be very clear, and ideally piloted before dissemination. Instructions should note that respondents are not being asked to answer the questions (a common misunderstanding), but just to rank how important they think they are.
Clear presentation is important. It is advised that questions are arranged in categories, to give a sense of structure, and to make particularly large lists feel less overwhelming. Steering Groups may consider whether or not plain language explanations are added to each question, where it is difficult to make the question itself lay-friendly (e.g. due to unavoidable use of medical terms).
Capacity to process responses will be a key determinant of a PSP’s approach to interim prioritisation.
Steering Groups are encouraged to use alternative means of consultation for interim prioritisation if a survey is not suitable for their particular patient and carer groups.
If the long list of questions is deemed too long, the JLA Adviser can help the Steering Group decide on a means of reducing it in a fair and transparent way. Some examples of criteria considered by Steering Groups in order to reduce a list of questions to a more manageable size for interim prioritisation include:
- Whether the question has been suggested by both patients and clinicians
- Whether the question has been suggested by a minimum of ‘x’ people
- Whether the question has been suggested by different kinds of professionals
- How many people overall have suggested the question
- Whether the question has been commonly expressed in other fora, such as patient helpline services
- Whether the question overlaps with one suggested by research recommendations.
Those asked to complete the interim prioritisation may include one or more of the following:
- Partner organisations
- original survey participants, if details have been collected for this purpose
- the general patient, carer and clinician communities – an open call akin to the original survey.
It is important that patients, carers and clinicians and the groups representing them participate. Interim priority setting can be conducted by email and/or post or online, depending on the communication preferences of the partner organisations and the capacity of the Steering Group.