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Patient. 2017 Apr;10(2):141-152. doi: 10.1007/s40271-016-0198-4.

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

Author information

1
OMERACT Patient Research Partner, Amsterdam, The Netherlands. mp.dewit@vumc.nl.
2
Department of Medical Humanities, VU University Medical Centre/EMGO+ instituut, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands. mp.dewit@vumc.nl.
3
Academic Rheumatology Unit, Bristol Royal Infirmary, University of Bristol, Bristol, BS2 8HW, UK.
4
Department of Medicine, University of Ottawa, Ottawa, ON, Canada.
5
Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St Michael's Hospital, University of Toronto, Toronto, ON, Canada.
6
Department of Epidemiology and Biostatistics, Amsterdam Rheumatology and Immunology Center, VU University Medical Center, Amsterdam, The Netherlands.
7
Centre for Health Policy School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia.
8
OMERACT Patient Research Partner, London, UK.
9
NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
10
Department of Rheumatology, Hôpital Ambroise Paré, APHP, Université Versailles Saint Quentin en Yvelines, Boulogne-Billancourt, France.
11
OMERACT Patient Research Partner, Vancouver, BC, Canada.
12
Ashford St Peter's Foundation trust Hospital, Chertsey, Surrey, UK.
13
OMERACT Patient Research Partner, Santa Barbara, CA, USA.
14
Healthy Motivations, Santa Barbara, CA, 93108, USA.
15
Bone and Joint Decade, The Global Alliance for Musculoskeletal Health, Truro, Cornwall, UK.
16
Institute of Bone and Joint Research, Sydney Medical School and School of Public Health, University of Sydney, Sydney, NSW, Australia.
17
Department of Rheumatology, Royal North Shore, St. Leonards, NSW, Australia.
18
OMERACT Patient Research Partner, Seattle, WA, USA.
19
Arthritis Patient Advisory Board, Arthritis Research Centre Canada, Richmond, BC, Canada.
20
OMERACT Patient Research Partner, Bristol, UK.
21
SDG LLC, Cambridge, MA, 02139, USA.
22
Medicine Service, VA Medical Center, Birmingham, AL, USA.
23
Division of Epidemiology at School of Public Health, Department of Medicine at School of Medicine, University of Alabama, Birmingham, AL, 35294-0022, USA.
24
Department of Orthopedic Surgery, Mayo Clinic College of Medicine, Rochester, MN, 55905, USA.
25
Division Immunology/Rheumatology, Stanford University School of Medicine, Palo Alto, CA, USA.
26
OMERACT Patient Research Partner, Amsterdam, The Netherlands.
27
Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands.
28
Division of Rheumatology, Johns Hopkins University, Baltimore, MD, USA.
29
Institut Pierre Louis d'Epidémiologie et de Santé Publique, Sorbonne Universités, UPMC Univ Paris 06, GRC-08, Paris, France.
30
Rheumatology Department, Pitie-Salpétrière Hospital, AP-HP, Paris, France.

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.

PMID:
27704486
PMCID:
PMC5362656
DOI:
10.1007/s40271-016-0198-4
[Indexed for MEDLINE]
Free PMC Article

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