Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)

M de Wit; JR Kirwan; P Tugwell; D Beaton; M Boers; P Brooks; S Collins; PG Conaghan; MA D’Agostino; C Hofstetter; R Hughes; A Leong; A Lyddiatt; L March; J May; P Montie; P Richards; LS Simon; JA Singh; V Strand; M Voshaar; CO Bingham; L Gossec

Journal article

Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)

M de Wit, JR Kirwan, P Tugwell, D Beaton, M Boers, P Brooks, S Collins, PG Conaghan, MA D’Agostino, C Hofstetter, R Hughes, A Leong, A Lyddiatt, L March, J May, P Montie, P Richards, LS Simon, JA Singh, V Strand Show all

Patient | ADIS INT LTD | Published : 2017

DOI: 10.1007/s40271-016-0198-4

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Abstract

There is increasing interest in making patient participation an integral component of medical research. However, practical guidance on optimizing this engagement in healthcare is scarce. Since 2002, patient involvement has been one of the key features of the Outcome Measures in Rheumatology (OMERACT) international consensus effort. Based on a review of cumulative data from qualitative studies and internal surveys among OMERACT participants, we explored the potential benefits and challenges of involving patient research partners in conferences and working group activities. We supplemented our review with personal experiences and reflections regarding patient participation in the OMERACT proce..

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University of Melbourne Researchers

Peter Brooks Author

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Funding Acknowledgements

The authors received no specific funding for this paper and have no financial disclosures directly linked with the contents of this paper. OMERACT (Outcome Measures in Rheumatology) is an international research group that is supported by registration fees and has received unrestricted hands-off funding from more than 23 pharmaceutical and clinical research companies over the past 2 years. MdeW, JRK, PT, DB, MB, PB, PGC, MADA, LM, LSS, JAS, VS, COB, and LG are, or were previously, members of the OMERACT Executive Committee; they received no financial remuneration for their participation in this role. COB was supported, in part, through a Patient-Centered Outcomes Research Institute (PCORI) Pilot Project Program Award (1IP2-PI000737-01) and a PCORI Methods Award (SC14-1402-10818). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or Methodology Committee.