Integrating patient engagement in care, organizational processes and policy to configure systems around patient capabilities

Abstract

Introduction : Integrated care has emerged as a major challenge at a time when patients rely on many providers, services and settings. Health systems have adopted patient-centred care as a guiding principle to improve continuity, and the engagement of patients and families is considered a key driver of system transformation in this direction. However, there is very little evidence of patient engagement contributing to palpable system improvement. Patient engagement PE is used to refer to a variety of activities involving patients and families. The framework proposed by Carman 2013 summarizes the three levels at which PE strategies have been developed, corresponding to micro direct care, meso organizational design and governance and macro policymaking levels. Strategies at each level have been treated in separate streams of research. Engagement in care has been explored in literatures around shared decision-making, shared care and patient activation. Engagement at the meso level involves efforts to design more responsive organizational processes. Engagement in policy straddles the literature on public participation in democratic systems and examines the exercise of “voice”. We consider that the lack of progress in translating the promise of engagement into compelling evidence of impact might, to some extent, be attributable to the segregated way in which engagement efforts are conducted and studied. Methodology : We conduct a realist review of the three streams of literature to clarify expectations of engagement at each level and identify mechanisms that enable strategies to fulfill them. We then explore the intersection and interaction between mechanisms found at each level. Results : Research suggests potential for the emergence of virtuous cycles where new skills for self-care are supported by improvements in organizational processes, and policies allocate resources and structure relationships to maximize capabilities of all actors, including patients. Our review points to both depth of engagement and particular mechanisms produced through engagement as contributors to this cycle. First, we find that along the continuum Carman from involvement through consultation to co-production, only engagement at the co-production end brings a pooling of appreciations and resources that opens new possibilities for service provision. Second, we identify mechanisms that promote co-production and find that many of these interact across levels of engagement; for example, community resources support self-care as well as assemble knowledge on local needs to introduce into policy debate. Conclusion : The impact of PE is compromised by a fragmentation of engagement efforts that mirrors the health system in its present form. Lessons learned : Progress toward integrated patient-centred care requires a reconfiguration of engagement efforts to recognize the interdependence between patient capacities for self-care, organizational processes that structure formal care provision, and policies that define resources. Limitations and future research : This literature-based study reveals contextual factors that contribute to variations in the depth of PE. However, in order to inform the design of more effective engagement strategies, we need empirical research to better understand how these strategies operate on context to permit a virtuous cycle of engagement, and to identify factors that enable cross-pollination across micro, meso and macro level engagement efforts.