title: Successful Stepwise Development of Patient Research Partnership: 14 Years' Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT).
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.
authors.affiliation: OMERACT Patient Research Partner, Amsterdam, The Netherlands. mp.dewit@vumc.nl.|Department of Medical Humanities, VU University Medical Centre/EMGO+ instituut, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands. mp.dewit@vumc.nl.
authors.forename: Maarten
authors.identifier: 0000-0002-8428-6354
authors.initials: M
authors.lastname: de Wit
authors.affiliation: Academic Rheumatology Unit, Bristol Royal Infirmary, University of Bristol, Bristol, BS2 8HW, UK.
authors.forename: John R
authors.initials: JR
authors.lastname: Kirwan
authors.affiliation: Department of Medicine, University of Ottawa, Ottawa, ON, Canada.
authors.forename: Peter
authors.initials: P
authors.lastname: Tugwell
authors.affiliation: Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St Michael's Hospital, University of Toronto, Toronto, ON, Canada.
authors.forename: Dorcas
authors.initials: D
authors.lastname: Beaton
authors.affiliation: Department of Epidemiology and Biostatistics, Amsterdam Rheumatology and Immunology Center, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Maarten
authors.initials: M
authors.lastname: Boers
authors.affiliation: Centre for Health Policy School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia.
authors.forename: Peter
authors.initials: P
authors.lastname: Brooks
authors.affiliation: OMERACT Patient Research Partner, London, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Collins
authors.affiliation: NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
authors.forename: Philip G
authors.initials: PG
authors.lastname: Conaghan
authors.affiliation: Department of Rheumatology, Hôpital Ambroise Paré, APHP, Université Versailles Saint Quentin en Yvelines, Boulogne-Billancourt, France.
authors.forename: Maria-Antonietta
authors.initials: MA
authors.lastname: D'Agostino
authors.affiliation: OMERACT Patient Research Partner, Vancouver, BC, Canada.
authors.forename: Cathie
authors.initials: C
authors.lastname: Hofstetter
authors.affiliation: Ashford St Peter's Foundation trust Hospital, Chertsey, Surrey, UK.
authors.forename: Rod
authors.initials: R
authors.lastname: Hughes
authors.affiliation: OMERACT Patient Research Partner, Santa Barbara, CA, USA.|Healthy Motivations, Santa Barbara, CA, 93108, USA.|Bone and Joint Decade, The Global Alliance for Musculoskeletal Health, Truro, Cornwall, UK.
authors.forename: Amye
authors.initials: A
authors.lastname: Leong
authors.affiliation: OMERACT Patient Research Partner, Vancouver, BC, Canada.
authors.forename: Ann
authors.initials: A
authors.lastname: Lyddiatt
authors.affiliation: Institute of Bone and Joint Research, Sydney Medical School and School of Public Health, University of Sydney, Sydney, NSW, Australia.|Department of Rheumatology, Royal North Shore, St. Leonards, NSW, Australia.
authors.forename: Lyn
authors.initials: L
authors.lastname: March
authors.affiliation: OMERACT Patient Research Partner, Seattle, WA, USA.
authors.forename: James
authors.initials: J
authors.lastname: May
authors.affiliation: OMERACT Patient Research Partner, Vancouver, BC, Canada.|Arthritis Patient Advisory Board, Arthritis Research Centre Canada, Richmond, BC, Canada.
authors.forename: Pamela
authors.initials: P
authors.lastname: Montie
authors.affiliation: Academic Rheumatology Unit, Bristol Royal Infirmary, University of Bristol, Bristol, BS2 8HW, UK.|OMERACT Patient Research Partner, Bristol, UK.
authors.forename: Pamela
authors.initials: P
authors.lastname: Richards
authors.affiliation: SDG LLC, Cambridge, MA, 02139, USA.
authors.forename: Lee S
authors.initials: LS
authors.lastname: Simon
authors.affiliation: Medicine Service, VA Medical Center, Birmingham, AL, USA.|Division of Epidemiology at School of Public Health, Department of Medicine at School of Medicine, University of Alabama, Birmingham, AL, 35294-0022, USA.|Department of Orthopedic Surgery, Mayo Clinic College of Medicine, Rochester, MN, 55905, USA.
authors.forename: Jasvinder A
authors.initials: JA
authors.lastname: Singh
authors.affiliation: Division Immunology/Rheumatology, Stanford University School of Medicine, Palo Alto, CA, USA.
authors.forename: Vibeke
authors.initials: V
authors.lastname: Strand
authors.affiliation: OMERACT Patient Research Partner, Amsterdam, The Netherlands.|Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands.
authors.forename: Marieke
authors.initials: M
authors.lastname: Voshaar
authors.affiliation: Division of Rheumatology, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Clifton O
authors.initials: CO
authors.lastname: Bingham
authors.affiliation: Institut Pierre Louis d'Epidémiologie et de Santé Publique, Sorbonne Universités, UPMC Univ Paris 06, GRC-08, Paris, France.|Rheumatology Department, Pitie-Salpétrière Hospital, AP-HP, Paris, France.
authors.forename: Laure
authors.initials: L
authors.lastname: Gossec
mesh_terms: D035843:Biomedical Research / Q000379:methods* / Q000639:trends*; D005544:Forecasting; D006801:Humans; D007400:Interprofessional Relations; D017063:Outcome Assessment, Health Care; D010358:Patient Participation; D011369:Professional-Patient Relations; D036301:Qualitative Research; D012216:Rheumatic Diseases / Q000503:physiopathology* / Q000628:therapy*; D012720:Severity of Illness Index