Agreeing scope and protocol
The Steering Group needs to define the PSP’s scope. Scope may be defined by the patient population of interest, e.g. adults and or/children, or the breadth of the condition or health area and its unique issues. It may also be influenced by the size of the evidence base against which priorities will need to be checked. It is important to consider the resource implications of scope, before agreeing it. A PSP with a broad remit (such as the Sight Loss and Vision PSP or the Palliative and end of life care PSP) may take longer, require greater resource and incur more costs than a PSP which has a tighter remit (like the PSPs done in Tinnitus or Mesothelioma).
A PSP with a broad remit is likely to gather more evidence uncertainties, which will increase the time needed to check and process these. A higher number of systematic reviews may be uncovered, so more time will be required to check the indicative questions against them and to extract the research recommendations for inclusion in the process. This extra time needed may have an impact on the costs of running the PSP.
The JLA website includes details of current and completed PSPs, showing their scope and health areas. Details of PSP scopes are shown in their protocol documents (for examples see the Key Documents sections of the PSPs in Coeliac Disease, Mild to Moderate Hearing Loss, or Digital Technology for Mental Health). Many of the PSPs have published final reports that give an idea of how many initial uncertainties were gathered and how many people they came from. A table in Chapter 6 gives examples of the numbers of survey respondents and numbers of questions submitted to PSPs.
In the early years of the JLA, the main output of a JLA PSP was a top 10 list of uncertainties that focused on treatment. Over the years, many PSPs have extended their scope to a wider range of interventions beyond treatments. Steering Groups will need to agree how they will approach this for the particular condition and setting they are working in. They should be aware that decisions around scope might have implications for both volume of data generated and the method of evidence checking.
In addition, the Steering Group should consider what it will do if its survey generates topics that are outside the agreed scope of the PSP but are nevertheless important, or are shown to be already answered by research. A transparent process is needed for management and reporting of these. There may be organisations that can use or communicate the ‘out-of-scope’ or ‘answered’ questions. Some PSPs have planned a second publication (in addition to one detailing the Top 10 and the process) which highlights the out-of-scope questions discovered. The Steering Group should also consider at the outset that a large amount of rich data and patient stories might come from the survey. Some PSPs have decided to produce a separate report from this data after the PSP process to ensure that patient stories are not lost. It is important however that this extra work does not distract from the main purpose of the PSP, which is to gather and prioritise uncertainties that fall within remit.
When agreeing its scope, a Steering Group may want to consider the following:
- Are the patient, carer and professional groups clearly identifiable?
- Can the scope/topic be clearly communicated?
- Will it generate questions that can be prioritised against each other?
- What volume of data will it generate?
- How many systematic reviews and guidelines or other sources of evidence will need searching?
- What are the limitations and risks?
- What are the implications for personnel, resources and timetable?