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Additional file 1. GRIPP2 short form.

Additional file 3. Completed GRIPP2 long form.

Additional file 3. GRIPP2 checklist.

Additional file 2. Topic guide.

Additional file 4. Researcher Feedback Form 2018.

Additional file 1. Survey.

Within current mainstream understandings of patient and public involvement (PPI) in health research, a clear distinction is made between what ‘involvement’ in research is: ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them'1 and what it is not: namely ‘engagement with’ and ‘participation in’ research. Research evidence describes problems than can arise when such distinctions are unclear or misunderstood (often by those new or unfamiliar with PPI); or when distinctions are intentionally blurred e.g. by ‘dual roles’ being created within some projects, where research participants also advise on the conduct of projects. What is less widely examined, however, is the blurring of boundaries between the object of enquiry which is the business of PPI for that project, the data which is the object of qualitative collection involving discussion with participants and the purposeful research activities which are best progressed through engagement with stakeholders. This poster draws upon case study findings from two recent, similar National Institute for Health Research (NIHR)-funded evaluations of PPI in health research: RAPPORT (England-wide) and IMPRESS (regional research programme-specific), pertaining to how researchers (from various disciplines, using various research designs) within different case study research projects can blur the boundaries between qualitative research, stakeholder events and PPI. We pose questions pertaining to the consequences of blurred research design boundaries for the success of outcomes of public-research collaborations. We query why, and to what extent, such distinctions matter in co-producing knowledge and in measuring the impact of various investments in collaborative research activities.

Eighteen Caucasian (white, Middle East and Asian) children diagnosed by paediatric rheumatologists in the UK and France as having systemic juvenile idiopathic arthritis (sJIA) were enrolled in this open label, single dose trial. All patients had evidence of continued symptoms and disease activity for at least three months while receiving0.2 mg/kg/day of prednisolone, or its equivalent, prior to recruitment. Twelve patients also received methotrexate (or =20 mg/m2/week). The patients were divided into three groups receiving 2, 4 or 8 mg/kg of MRA (tocilizumab) by intravenous infusion. No evidence of dose-limiting toxicity was observed and there were no dose-limiting safety issues. MRA appeared to be dramatically effective, with clinical and laboratory responses observed by 48 h post infusion, and these improvements continued well after serum MRA was undetectable. Eleven patients achieved the JIA definition of improvement (at least 3 of 6 core set criteria with a 30% improvement and no more than one worsened by 30%) and eight achievedor =50% improvement. There were no observable differences with age. Clinical improvement in these children was observed for up to eight weeks, supporting the hypothesis that IL-6 is a key cytokine in the upregulation of genes crucial in the inflammation processes of sJIA, and the possibility of sequestration of MRA in the extra-vascular compartment needs to be considered.