We took a comprehensive approach in our systematic search and included all empirical qualitative, quantitative, and mixed methods study designs across all settings of care to address our narrow research questions. Our review did not fit into typologies of literature reviews [34, 35], given that we included qualitative and quantitative studies (to capture the breadth of studies in this area), employed a thematic analysis (given the multiplicity of designs), and applied a quality appraisal. We followed the PRISMA reporting criteria for Systematic Reviews and Meta-Analyses (Fig. 2) [36].
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Mental health settings emerged as a frequent venue for patient engagement in our review. The earliest reports in our review [61, 63, 80] are in this setting, suggesting that the therapeutic approaches, the nature of the population, or the orientation of mental health services might encourage greater patient participation in this area. Indeed, enabling service user involvement in care planning is a key principle of contemporary mental health guidance in the UK [81] and a potentially effective method of improving the culture and responsiveness of mental health services in light of a service history founded on aspects of containment and compulsion, and the stigmatization of those using mental health services [82]. Many of the co-design engagement activities that led to staff and organizational changes such as improved collaboration and mutual learning [42, 47, 76, 77], sharing or neutralizing power among patients and providers or staff [52], developing new competencies, and negotiating for service changes [39, 59] also occurred in mental health. While patient engagement is now occurring in many settings, the experiences in mental health settings serve as important examples of effective patient engagement.
Our review builds upon previous reviews in this field by providing insight into the associations between quality improvement methods and the varying system-level outcomes they yield. Indeed, our review echoes previous research indicating that patient engagement can lead to a multiplicity of health services outcomes with sufficient role definition, training, and alignment of patient-provider expectations but that the quality of the reporting has been poor and the full impact of patient engagement is not fully understood [87,88,89]. Previous reviews have been limited to specific countries [87], care settings (e.g., mental health [89]), hospitals [90], or study design (e.g., qualitative studies [88]). In this way, our review provides a comprehensive perspective of optimal strategies used internationally, across care settings and using multiple methodologies to engage patients, caregivers, and relatives in quality of care improvement initiatives. Our review also provides novel insights into how the level of engagement influences the outcomes, namely, discrete products (e.g., development of tools and documents) largely derived from low-level engagement (consultative unidirectional feedback), whereas care process or structural outcomes (e.g., improved governance, care or services) mainly derived from high-level engagement (co-design or partnership strategies). If the benefits of engaging patients in the design or delivery of health care are to be realized at an organization or system level, then effective strategies and the contextual factors enabling their outcomes need to be identified so that learning can be generalized. Importantly, our review provides guidance on the effective strategies and contextual factors that enable patient engagement including techniques to enhance the design, recruitment, involvement, and leadership action, and those aimed to create a receptive context.
YB and GRB conceived of the study and participated in its design and coordination. KO and PB retrieved the records. EO, CF, and PB screened the records. EO and CF extracted the data from the eligible articles. YB and GRB developed the initial interpretations of the data and participated in the data analysis. SC conducted the quality appraisal. YB drafted the manuscript. YB and GRB revised the manuscript. J-LD and M-PP were involved in the study design and oversight; they reviewed the initial data analyses and suggested revisions to the versions of the manuscript. All authors read and approved the final manuscript.
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