Increasingly, patients are being recognized as essential partners in the solutions to healthcare system problems. Patient engagement has been referred to as the “holy grail” and next “blockbuster drug” of health care because it may be revolutionary for transforming the design, delivery, and responsiveness of health services. Patients engage in a variety of healthcare activities, and there are multiple frameworks that depict the degrees of patient engagement in these activities. The literature also uses a variety of terms and concepts to depict the degrees of patient engagement. Moreover, meaningful patient engagement is a concept widely utilized in the literature without a clear definition. The conceptual boundaries and differences between degrees of engagement are unclear. This scoping review summarizes the descriptive characteristics, the degrees of engagement, and examines the terms used to depict meaningful engagement as conceptualized by studies on planning and designing of administrative or health services and interventions. The research questions for this study are: What are the descriptive and study characteristics of studies where patients engage in planning and designing activities? What terms do studies use to depict meaningful patient engagement? This review found a variety of terms used by the literature to depict meaningful engagement: collaboration, cooperation, co-production, active involvement, partnership, and consumer and peer leadership. This review also found that studies seldom use patient engagement frameworks to identify the degree of engagement. The implications of these findings are discussed in light of the literature on patient engagement and recommendations for future practice are provided.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)

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