OP0210-PARE Dutch juvenile idiopathic arthritis patients, carers and clinicians creating a research agenda together following the james lind alliance method. (12th June 2018)

• Record Type: Journal Article
• Authors: Schoemaker, C.G; Armbrust, W.; Swart, J.F.; Versluis, E.; Olsder, W.; Wulffraat, N.M.
• Is Part Of: Annals of the rheumatic diseases. Volume 77(2018)Supplement 2
• Page Start: 154
• Page End: 154
• Publication Date: 2018-06-12
• Subjects: Rheumatism -- Periodicals; 616.723005
• DOI: 10.1136/annrheumdis-2018-eular.2756
• Languages: English
• ISSNs: 0003-4967

Abstract

Abstract : Background: Biomedical research should support patients, carers and clinicians to take important decisions in the consulting room and eventually to improve the lives of patients. 1 Thus far the end-users of Juvenile Idiopathic Arthritis (JIA) research have not been involved in the prioritisation of future research. The JIA research community clearly sees the unmet need and has repeatedly expressed the wish to do something about this. As Parsons et al. have put it: 'Understanding young people's research priorities is important to develop research that is in tune with their needs'. 2 Putting this into practice starts with a search for relevant issues, working together with the end users of scientific knowledge on JIA – patients, carers and clinicians – and to prioritise research questions that can really make a difference. 3 Objectives: In 2018 Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance methodology. 3, 4 An established research agenda, created by patients, carers and clinicians, will inform researchers and research funders about what the most important, relevant research questions for JIA are. Methods: The James Lind Alliance (JLA) methodology enables us to do a systematic search for unanswered questions that are relevant to patients, carers and clinicians. 4 In a 'Priority Setting Partnership' (PSP), we will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from patients and their carers will be given the same weight as that from clinicians. The Dutch JIA PSP will be led by a steering group. This steering group coordinates the PSP and organises the activities. It will include representatives of patients (for JIA: young and adult JIA-patients), carers (for JIA: parents and spouses) and clinicians (for JIA: paediatric rheumatologists, physiotherapists, nurses, psychologists, social workers, ophthalmologist, etc.). Results: The Dutch JIA organisations support the agenda; also financially. Following the JLA method it will take approximately twelve to eighteen months to formulate a research agenda, so te research agenda for JIA will be published in 2019. Conclusions: A research agenda that will be jointly inspired by patients. carers and clinicians can really make a difference for decision-making in the consulting room and for the lives of JIA-patients. References: [1] Macleod MR, Michie S, Roberts I, et al. Biomedical research: increasing value, reducing waste. Lancet2014;383:101–4. doi:10.1016/S0140-6736(13)62329-6 [2] Parsons S, Thomson W, Cresswell K, Starling B, McDonagh JE. Barbara Ansell, National Network for Adolescent Rheumatology. What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study. Pediatr Rheumatol Online J2017;15:53. [3] Schoemaker CG, Prakken AB, Furth EF. Patients and physicians creating a research agenda together: the method of the British James Lind Alliance [Article in Dutch]. Ned Tijdschr Geneeskd2017;161(0):D1764. [4] JLA Guidebook. www.jla.nihr.ac.uk/jla-guidebook [Accessed 24 Jan 2018]. Disclosure of Interest: None declared