Active Patient Engagement: Long Overdue in Rehabilitation Research.

Abstract

Patients can make a valuable contribution to developing and improving clinical care. Current foundations and strategies, including the Canadian Foundation for Healthcare Improvement and Canada's Strategy for Patient-Oriented Research, focus on ways to engage patients in the development of health services, and a body of literature reports on engaging patients in decision making and policies to promote care delivered across acute-care settings.1 In comparison, patient engagement in research has received little attention.2 Patients' place in research has evolved from a passive role, in which they represent data points, to an active role that involves contributing to the research process. According to the Canadian Institutes of Health Research (CIHR), the term patient engagement refers to the meaningful collaboration of patients in the conduct of research, and patient engagement is now a requirement of any application for funding.3 The CIHR recommends integrating the patient perspective into every step of the research process, from conceptualizing a research idea and developing protocols through to translating the research findings into clinical practice.3 Lessons on involving patients in research can be learned from other countries. In the United Kingdom, the government-funded INVOLVE program supports active patient engagement in health research across the country,4 but how patients have contributed to the research process is usually described only briefly in published research papers, if at all, and therefore the full impact of their involvement is seldom fully understood. Studies must routinely provide detailed information about the method of engaging patients in research and the impact of such engagement on outcomes and continuing research inquiry.5 Very few published rehabilitation studies have included patients in the research process, except as participants.2 In the United States, the National Institute on Disability and Rehabilitation has recognized the importance of involving people with disabilities in rehabilitation research;6 several studies have explored the experience of living with a disability,7–9 and people with disabilities have been included in program development10,11—yet patient involvement in testing rehabilitation interventions is still rare,2 which may contribute to the current challenges of developing, translating, disseminating, and sustaining evidence-based rehabilitation interventions in clinical practice.