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 and the unique issues which sit within it. It may also be influenced by the size of the evidence base against which it will need to check its priorities. 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) will generally take longer, require greater resource and incur more costs than a PSP which has a tighter remit (like the PSPs undertaken in Tinnitus or Mesothelioma).
A PSP with a broad remit is likely to receive more uncertainties which will increase the time needed to check and prioritise these. A higher number of systematic reviews may be uncovered, meaning more time will be required to check the uncertainties 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 the current and completed PSPs, showing their scope and clinical areas. Details of PSP scopes are shown in their protocol documents (for examples see the Key Documents sections of PSPs in Miscarriage, Mild to Moderate Hearing Loss, or Hair Loss). Many of the PSPs have published final reports which give an idea of how many initial uncertainties were gathered and how many people they came from. The main output of a JLA PSP has traditionally been a top 10 list of uncertainties that focus on treatment. It is recognised that many PSPs now extend their scope beyond identifying and prioritising treatment uncertainties and Steering Groups will need to agree how they will approach this. They should be aware that decisions around scope may have implications for both volume of data generated and adaptations to 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 that are nevertheless important. A transparent process will be needed for management and potential reporting of these. There may be organisations on the Steering Group which can use or communicate the ‘out-of-scope’ 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 will come from the survey. Some PSPs have decided to produce a separate report from this data after the PSP process to ensure that important patient stories are not lost. It is important however that this extra work does not distract from the main purpose of the PSP.