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Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event.

Jennifer LeeseSheila KerrAnnette McKinnonErin CarruthersCatherine BackmanLinda LiAnne Townsend
Published in: Journal of participatory medicine (2017)
Patient engagement occurs when patients actively collaborate in health research in ways that are meaningful to them. Resources to facilitate patient engagement have been developed, but their approach is mainly toward building competencies in the early stages of forming new practices of patient engagement. This paper describes a patient-led collaboration in rheumatology, in the context of an established patient-researcher partnership. Using a case study approach, we report on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board (APAB), which is a group of volunteer advocates living with arthritis based at Arthritis Research Canada. We provide an overview of APAB's decade-long history, describe the planning and the event itself, and report on the challenges encountered, reflections and solutions pertinent for sustaining patient-researcher collaborative practices.
Keyphrases
  • case report
  • healthcare
  • rheumatoid arthritis
  • primary care
  • public health
  • systemic lupus erythematosus
  • newly diagnosed
  • prognostic factors
  • juvenile idiopathic arthritis
  • patient reported outcomes