Table 1 The priority setting process in the James Lind Alliance methodology

1. Setting up the steering group

A PSP is led by a steering group that coordinates the PSP and organises the activities. It will include representatives of patients, carers and clinicians.

2. Gathering uncertainties

An electronic survey questionnaire is distributed widely. Patients, carers and clinicians will be asked: “What questions would you like answered to improve the health and wellbeing of people with JIA?” For young people with JIA focus groups will be organised. Research recommendations stated in systematic reviews and clinical guidelines are searched for as well (i.c. the Dutch JIA-medication guideline and the European SHARE initiative).

3. Data processing and verifying uncertainties

Out-of-scope submissions are removed. The eligible submissions are categorised and rephrased as researchable questions. Duplicates and very similar submissions are combined. Questions that have already been answered in relevant good quality research will be removed.

4. Interim priority setting

The long list of in-scope verified uncertainties goes into an electronic interim priority setting survey. Patients, carers and clinicians are asked to choose (and possibly also rank) the 10 uncertainties from the list that are most important in their experience. Completed interim prioritisation results are grouped into patients, carers and clinicians, and separate scores kept to ensure fair weighting of the constituent groups. The top 25–30 questions are taken to the final workshop.

5. Final priority setting

In a final day-long workshop, 20–30 people (patients, carers and clinicians) discuss the questions and gradually agree on the final order of priority of the list, focusing especially on agreeing a ‘Top 10’. The Top 10 will be published on the JLA website, and in a peer reviewed journal.