Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: A study protocol
Schoemaker, Casper G.; Armbrust, Wineke; Swart, Joost F.; Vastert, Sebastiaan J.; Van Loosdregt, Jorg; Verwoerd, Anouk; Whiting, Caroline; Cowan, Katherine; Olsder, Wendy; Versluis, Els; Van Vliet, Rens; Fernhout, Marlous J.; Bookelman, Sanne L.; Cappon, Jeannette; Van Den Berg, J. Merlijn; Schatorjé, Ellen; Muller, Petra C.E.Hissink; Kamphuis, Sylvia; De Boer, Joke; Lelieveld, Otto T.H.M.; Van Der Net, Janjaap; Jongsma, Karin R.; Van Rensen, Annemiek; Dedding, Christine; Wulffraat, Nico M.
(2018) Pediatric Rheumatology, volume 16, issue 1, pp. 1 - 5
(Article)
Abstract
Background: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. Main body:
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Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a 'Priority Setting Partnership' (PSP), they will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from clinicians, patients and their carers will be equally valued. Additionally, focus groups will be organised to involve young people with JIA. The involvement of all contributors will be monitored and evaluated. In this manner, the project will contribute to the growing body of literature on how to involve young people in agenda setting in a meaningful way. Conclusion: A JIA research agenda established through the JLA method and thus co-created by patients, carers and clinicians will inform researchers and research funders about the most important research questions for JIA. This will lead to research that really matters.
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Keywords: James Lind Alliance, Juvenile Idiopathic Arthritis (JIA), Patient involvement, Research agenda, Pediatrics, Perinatology, and Child Health, Rheumatology, Immunology and Allergy
ISSN: 1546-0096
Publisher: BioMed Central
Note: Funding Information: Formulating a research agenda for JIA is not a goal in itself. It is important that researchers and research funders are inspired by the defined priorities when preparing for and funding new research projects. Therefore all Dutch academic centers for pediatric rheumatology will be represented in the steering group. We will present our results at a 2019 meeting of a large Dutch/Canadian research project on personalised medicine, UCAN CAN-DU, funded by the Netherlands Organisation for Health Research and Development ZONMW, the Canadian Institutes of Health Research (CIHR) and Dutch Arthritis Foundation (ReumaNederland), to inspire further JIA-research. Funding agencies will be invited for our final workshop. Members and ambassadors of the Dutch JIA-PSP are involved in European organisations like ENCA, Paediatric Rheumatology European Society (PReS) and the European League Against Rheumatism (EULAR). Collectively, these measures will ensure the optimal implementation of the research agenda in different “layers” of research. Publisher Copyright: © 2018 The Author(s).
(Peer reviewed)
