Patient perspective in outcome measures developed by OMERACT

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. Facilitating factors toward patient involvement have been the strong commitment of the leadership; 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.