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Patient Engagement and Canada’s SPOR Initiative: A Resource Guide for Research Teams and Networks

OSSU has engaged with Dr. Julia Abelson, Dr. Antoine Boivin, and others to develop resources  around the science of patient engagement, to help advance patient-oriented research in Canada.

One such resource is this guide, which has been prepared with the objective of supporting researchers, decision makers and other relevant stakeholders involved in a wide range of SPOR-related activities. In particular, this document seeks to:

  1. Clarify key concepts and terms relevant to involving patients in health research such as what we mean by patients, the public and stakeholders, and the different levels and types of involvement and the rationales and perceived benefits of patient involvement.
  2. Describe, at a very high level, the current state of the evidence about patient engagement with respect to the effectiveness of different methods in relation to process and outcome measures.
  3. Assemble in one place, a selection of resource documents collected from leading patient engagement organizations around the world to provide basic guidance for researchers about principles and methods for involving patients in health research.