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Outcomes from the patient perspective workshop at OMERACT 6

Kirwan, John R.; Heidberg, Turid; Hewlett, Sarah; Hughes, Rod; Kvien, Tore; Ahlmen, Monica; Boers, Maarten; Minnock, Patricia; Saag, Kenneth; Shea, Bev; Suarez Almazor, Maria; Taal, Erik


John R. Kirwan

Turid Heidberg

Rod Hughes

Tore Kvien

Monica Ahlmen

Maarten Boers

Patricia Minnock

Kenneth Saag

Bev Shea

Maria Suarez Almazor

Erik Taal


The objective of the Patient Perspective Workshop at OMERACT 6 was to address the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease themselves. This was done by reviewing the current state of research in the area, identifying the requirements for the development of valid instruments, delineating a research agenda that can attain these requirements, and motivating participants to undertake the appropriate research. Through a series of meetings and discussion sessions a research agenda emerged that includes: exploring subjective experiences of RA identified by patients as important but not encompassed within the current "core set" of outcome measures (such as a sense of well being, fatigue, and disturbed sleep); clarifying terminology; and empowering patients to be more effective partners in outcomes research. These were supported by the OMERACT plenary session. Specific actions were required by both patient participants and organizers to ensure the nature of the conference, its focus and method of working were understood, and that the patient participants were sufficiently confident to make their contribution.


Kirwan, J. R., Heidberg, T., Hewlett, S., Hughes, R., Kvien, T., Ahlmen, M., …Taal, E. (2003). Outcomes from the patient perspective workshop at OMERACT 6. Journal of Rheumatology, 30(4), 868-872

Journal Article Type Article
Publication Date Apr 1, 2003
Journal Journal of Rheumatology
Print ISSN 0315-162X
Publisher Journal of Rheumatology
Peer Reviewed Peer Reviewed
Volume 30
Issue 4
Pages 868-872
Keywords rheumatoid arthritis, patient perspective, OMERACT 6
Public URL
Publisher URL