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REVIEW ARTICLE
Year : 2013  |  Volume : 8  |  Issue : 6  |  Page : 17-22

Patient perspective in outcome measures developed by OMERACT


1 UPMC Univ Paris 06, GRC-UPMC 08 (EEMOIS); AP-HP, Pitie´ Salpeˆtrie`re Hospital, Department of Rheumatology, Paris, France
2 University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol BS2 8HW, UK
3 Department of Medical Humanities, VU Medical Centre, Amsterdam, Netherlands

Correspondence Address:
Laure Gossec
UPMC Univ Paris 06, GRC-UPMC 08 (EEMOIS); AP-HP, Pitie´ Salpeˆtrie`re Hospital, Department of Rheumatology, Paris, France

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Source of Support: None, Conflict of Interest: None


DOI: 10.1016/j.injr.2013.11.004

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We describe the process of patient involvement and the impact of including the patient perspective in OMERACT conferences. OMERACT has taken on a leading role in including patients as research partners in conferences and scientific projects, and this has lead to a formal assessment of the patient perspective over the last 10 years. The role of patients has evolved from a single focus group in 2002 to full integration in all parts of the conference in 2012. Long-term engagement of patient partners has made a significant change in the scope and conduct of rheumatology research. It has enriched the research agenda by identifying previously neglected outcome domains such as fatigue, sleep disturbances and flares, and it has contributed to more patient relevant outcomes in clinical trials. Facili- tating factors toward patient involvement have been the strong commitment of the lead- ership; an adequate selection procedure; an inclusive conference design; an interactive and encouraging moderation style, and self-organized support. However, challenges for the future include where to set the limits for patient partnership, and the representativeness of the patient research partners in particular in terms of country of origin and culture.


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