Recalibrating the integration agenda: the position of citizens and communities in integrated care

Abstract

Introduction: In this conceptual paper, we reflect on the emergence of citizens as active participants to care integration within Western, highly professionalized care systems. We explore how this development challenges established ways of conceptualizing and practicing integrated care. Ranging from professionals’ alignment with lay caregivers to citizens taking up formal ownership of services, citizen participation is often presented as a new frontier for care integration. Still, scholarly insight into the organizational implication of integration with and by citizens (instead of ‘merely’ for citizens) remains limited. Theory/Methods: First, we select and review key publications in the field of integrated care, analyzing how citizens and communities are positioned within the process of integration. Second, we draw on literature on citizen involvement to analyze the tension between the logics by which professional services are organized and the rationale(s) for involving citizens. We draw on our own empirical studies and examples from the literature to illustrate the areas in which such tensions surface. Findings: First, we discuss three reasons why citizens’ role in integrating services deserves more attention within the field of integrated care. These include (1) citizens’ life-world perspective, enabling them to contribute to the normative frameworks that guide service integration by prioritizing which issues ‘matter’ at the local level or for particular user groups; (2) citizens’ ability to identify whether the efforts of multiple organizations and professionals give rise to barriers to service access and quality at the individual user level; and (3) citizens’ prominent role as ‘lay’ providers of care, who are at risk of being ignored or marginalized when integration is approached as a predominantly professional or managerial endeavor. Second, we explore how these three incentives for involving citizens can be at odds with professional or managerial principles that often dominate how services are organized and integrated. We discuss five key areas of competing principles or perspectives—each potentially legitimate when considered in isolation—that become increasingly salient and require careful consideration when citizens assume a more prominent role in processes of integration: Competing ‘democratic’ and ‘instrumental’ rationales for involvement Competing claims of who represents ‘the community’ Different ways of valuing and utilizing professional knowledge and lay knowledge Trying to be ‘in control’ of work processes while flexibly aligning these with and to citizens Disparate perspectives on professional care organizations’ raison d’etre Discussion/Conclusion/Lessons Learned: We discuss how these five areas of tension force us to reconsider established assumptions that often guide efforts at care integration. While highlighting the potential value of citizen involvement, we also debunk the myth of citizens as the panacea for all challenges to service integration; particularly remaining critical of opportunistic, tokenistic or instrumental attempts at fostering their involvement. Limitations/Future Research: Our paper outlines a broad agenda to recalibrate the position of citizens and communities in integrated care. Future research needs to elaborate each of these five areas in more depth, developing our insights as well as practical tools for supporting constructive citizen involvement.