Citizens as Active Participants in Integrated Care: Challenging the Field’s Dominant Paradigms

Abstract

Policy makers, practitioners and academics often claim that care users and other citizens should be ‘at the center’ of care integration pursuits. Nonetheless, the field of integrated care tends to approach these constituents as passive recipients of professional and managerial efforts. This paper critically reflects on this discrepancy, which, we contend, indicates both a key objective and an ongoing challenge of care integration; i.e., the need to reconcile (1) the professional, organizational and institutional frameworks by which care work is structured with (2) the diversity and diffuseness that is inherent to pursuits of active user and citizen participation. By identifying four organizational tensions that result from this challenge, we raise questions about whose knowledge counts (lay/professional), who is in control (local/central), who participates (inclusion/exclusion) and whose interests matter (civic/organizational). By making explicit what so often remains obscured in the literature, we enable actors to more effectively address these tensions in their pursuits of care integration. In turn, we are able to generate a more realistic outlook on the opportunities, limitations and pitfalls of citizen participation.

Engaged yet excluded: The processual, dispersed, and political dynamics of boundary work

“…Importantly, the job is not done after a local space for citizen engagement has been created. Instead, this is when the real work begins: advocates should be prepared to make an ongoing investment in dealing with recurrent contestations over the scope and impact of participation -facing a range of actors with often-competing interests and divergent perspectives on what citizen engagement should look like (Glimmerveen et al, 2018(Glimmerveen et al, , 2019. In particular, our study shows that citizen-engagement advocates must not turn a blind eye to the 'internal' organizational dynamics that precipitate or are triggered by 'external' alignment with citizens.…”

Measuring the benefits of the integration of health and social care: qualitative interviews with professional stakeholders and patient representatives

“…Semi-structured interviews were conducted with stakeholders to explore the value of integrated care, identify aspects for evaluation to determine the success of integrated care, and identify appropriate measures for these aspects. Commonly, integrated care is pursued for patients and service users, without adequately acknowledging the potential contributions that they can make [17].…”

Suitable Scales; Rethinking Scale for Innovative Integrated Care Governance

“…Accountability goes beyond being responsible towards 'who can pay or who can punish' (health insurers or inspectorates) but also towards the society or (local) citizens, especially when they are increasingly becoming partners and co-producers of (informal) care [18]. When the role of citizens themselves changes, community governance including democratic representation, intertwined with health-and social care networks on a suitable scale is the new landscape [19].…”