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Engaging Stakeholders and Promoting Uptake of OMERACT Core Outcome Instrument Sets
Sean R Tunis1,2,3, Lara J Maxwell4,5,6, Ian D Graham1,2,3
1From the Center for Medical Technology Policy; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland; University of Alabama at Birmingham and Birmingham Veterans Affairs Medical Center, Birmingham, Alabama; SDG LLC, Cambridge, Massachusetts; Division of Immunology/Rheumatology, Stanford University School of Medicine, Palo Alto, California, USA; Centre for Practice-Changing Research, Ottawa Hospital Research Institute; Ottawa Hospital Research Institute, Clinical Epidemiology Program; School of Epidemiology, Public Health and Preventive Medicine, Faculty of Medicine, University of Ottawa; Cardiovascular Research Methods Centre, University of Ottawa Heart Institute; Department of Epidemiology and Community Medicine, University of Ottawa; Department of Medicine, Faculty of Medicine, University of Ottawa; Cochrane Musculoskeletal, University of Ottawa, Ottawa; Musculoskeletal Health and Outcomes Research, St. Michael's Hospital; Institute for Work and Health; Department of Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute and the Institute for Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada; Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Melbourne; Sydney Medical School, Institute of Bone and Joint Research and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, Australia; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds and UK National Institute for Health Research (NIHR) Leeds Musculoskeletal Biomedical Research Unit, Leeds, UK; Hôpital Ambroise Paré, Rheumatology Department, Boulogne-Billancourt; INSERM U1173, Laboratoire d'Excellence INFLAMEX, UFR Simone Veil, Versailles-Saint-Quentin University, Montigny-le-Bretonneux; Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France; Department of Medical Humanities, VU University Medical Centre/EMGO+ Institute, Amsterdam, the Netherlands.
Objective:
While there has been substantial progress in the development of core outcomes sets, the degree to which these are used by researchers is variable. We convened a special workshop on knowledge translation at the Outcome Measures in Rheumatology (OMERACT) 2016 with 2 main goals. The first focused on the development of a formal knowledge translation framework and the second on promoting uptake of recommended core outcome domain and instrument sets.
Methods:
We invited all 189 OMERACT 2016 attendees to the workshop; 86 attended, representing patient research partners (n = 15), healthcare providers/clinician researchers (n = 52), industry (n = 4), regulatory agencies (n = 4), and OMERACT fellows (n = 11). Participants were given an introduction to knowledge translation and were asked to propose and discuss recommendations for the OMERACT community to (1) strengthen stakeholder involvement in the core outcome instrument set development process, and (2) promote uptake of core outcome sets with a specific focus on the potential role of post-regulatory decision makers.
Results:
We developed the novel "OMERACT integrated knowledge translation" framework, which formalizes OMERACT's knowledge translation strategies. We produced strategies to improve stakeholder engagement throughout the process of core outcome set development and created a list of creative and innovative ways to promote the uptake of OMERACT's core outcome sets.
Conclusion:
The guidance provided in this paper is preliminary and is based on the views of the participants. Future work will engage OMERACT groups, "post-regulatory decision makers," and a broad range of different stakeholders to identify and evaluate the most useful methods and processes, and to revise guidance accordingly.
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