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

Maarten Wit (), John R. Kirwan (), Peter Tugwell (), Dorcas Beaton (), Maarten Boers (), Peter Brooks (), Sarah Collins (), Philip G. Conaghan (), Maria-Antonietta D’Agostino (), Cathie Hofstetter (), Rod Hughes (), Amye Leong (), Ann Lyddiatt (), Lyn March (), James May (), Pamela Montie (), Pamela Richards (), Lee S. Simon (), Jasvinder A. Singh (), Vibeke Strand (), Marieke Voshaar (), Clifton O. Bingham () and Laure Gossec ()
Additional contact information
Maarten Wit: OMERACT Patient Research Partner
John R. Kirwan: University of Bristol
Peter Tugwell: University of Ottawa
Dorcas Beaton: Li Ka Shing Knowledge Institute, St Michael’s Hospital, University of Toronto
Maarten Boers: Amsterdam Rheumatology and Immunology Center, VU University Medical Center
Peter Brooks: University of Melbourne
Sarah Collins: OMERACT Patient Research Partner
Philip G. Conaghan: University of Leeds
Maria-Antonietta D’Agostino: Hôpital Ambroise Paré, APHP, Université Versailles Saint Quentin en Yvelines
Cathie Hofstetter: OMERACT Patient Research Partner
Rod Hughes: Ashford St Peter’s Foundation trust Hospital
Amye Leong: OMERACT Patient Research Partner
Ann Lyddiatt: OMERACT Patient Research Partner
Lyn March: Sydney Medical School and School of Public Health, University of Sydney
James May: OMERACT Patient Research Partner
Pamela Montie: OMERACT Patient Research Partner
Pamela Richards: University of Bristol
Lee S. Simon: SDG LLC
Jasvinder A. Singh: Medicine Service, VA Medical Center
Vibeke Strand: Stanford University School of Medicine
Marieke Voshaar: OMERACT Patient Research Partner
Clifton O. Bingham: Johns Hopkins University
Laure Gossec: Sorbonne Universités, UPMC Univ Paris 06, GRC-08

The Patient: Patient-Centered Outcomes Research, 2017, vol. 10, issue 2, No 2, 152 pages

Abstract: 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 process. We found that between 2002 and 2016, 67 patients have attended OMERACT conferences, of whom 28 had sustained involvement; many other patients contributed to OMERACT working groups. Their participation provided face validity to the OMERACT process and expanded the research agenda. Essential facilitators have been the financial commitment to guarantee sustainable involvement of patients at these conferences, procedures for recruitment, selection and support, and dedicated time allocated in the program for patient issues. Current challenges include the representativeness of the patient panel, risk of pseudo-professionalization, and disparity in patients’ and researchers’ perception of involvement. In conclusion, OMERACT has embedded long-term patient involvement in the consensus-building process on the measurement of core health outcomes. This integrative process continues to evolve iteratively. We believe that the practical points raised here can improve participatory research implementation.

Date: 2017
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DOI: 10.1007/s40271-016-0198-4

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