The study and practice of patient and caregiver engagement in research are growing across the globe. Engagement of patients and caregivers (i.e., including family), in research is encouraged broadly by patient groups and advocates, government and other funding programs, and researchers keen to enhance relevance and application/uptake over the course of their work. There are many approaches and methods relevant to the different stages of the research cycle. These methods have been used in various domains of research and quality improvement initiatives to address challenges in clinical care, the organization and delivery of health care, as well as at the population health level, and in health policy. Evaluation in patient and caregiver engagement is also growing and there are multiple tools available to assess perceptions and experiences of engagement from the perspectives of researchers, patients, and caregivers.

In this course the student(s) will learn and critique: underlying theories and frameworks that have influenced this phenomenon; emerging definitions of partnership and engagement; the predominant methods for engagement; their application in different settings and types of problems; and efforts in evaluation. The aim of this course is to provide exposure to the breadth of the current knowledge and approaches in researcher-patient partnerships, as well as an understanding of strategies to overcoming the challenges and pitfalls associated with this work so that its true value and impact can be realized. As a growing body of evidence suggests, patient and caregiver engagement in research is an important skill set and contributes toward a higher quality and better functioning health care system.

Objectives: upon completion of this course you will be able to: 1) Analyze and evaluate the underlying theories, trends and frameworks that contributed to the emergence of patient and caregiver engagement in research as a valued approach, area of study and area of expertise. 2) Understand current definitions and meanings of key terms (e.g., patient and caregiver engagement, patient-oriented research, etc.). 3) Examine selected methods adopted by research teams and patient and caregiver groups to engage patients and caregivers across the research cycle, and the types of settings and/or problems within health care where these approaches are applied. 4) Evaluate the benefits and challenges of engagement from different perspectives and strategies to address these challenges. 5) Identify available tools and resources to support the evaluation of actual/perceived value, impact and implications of engagement — from different perspectives (e.g., researcher, patient or caregiver, policy maker, or research funder). 6) Apply patient and caregiver engagement concepts to a research topic of choice.