Operationalizing Patient-Centered Integrated Care: The Gap between Discourse and Action

Abstract

Introduction: Complex patients have multiple chronic conditions, often compounded by psychosocial challenges They require a mix of services delivered by multiple providers across settings, which are optimally coordinated through integrated care models. A key success factor of these models is patient-centeredness and engagement. In 2012, Ontario, Canada launched Health Links (HL), a patient-centered initiative that aims to better coordinate care for patients with complex needs. This is achieved via individualized, coordinated care plans (CCPs) that are tailored to the needs and preferences of every patient. HL documents had a clear vision about how to put patients front and center and engage them in every step of the intervention, including co-designing the program, engaging in implementation and evaluation of the patients’ experience with HL. This study aimed to explore if the vision of patient-centeredness and engagement was operationalized in the same way it was planned. Theory/Methods: We conducted evaluative case studies of three HLs within one regional health authority in the spring/summer of 2016. Data was collected through semi-structured interviews with leaders and providers working within the three HLs and an in-depth document analysis of business plans, pre-implementation documents, meeting minutes and all publicly available electronic materials. We compared documentation to interview data, conceptualizing documents as the source of the planned view and draw the operationalizing view from the interviews. Results: Our preliminary results show that leaders and providers agree with the HLs’ planned view that patient-centeredness and engagement is the key philosophy behind HL as a program. However, in terms of operationalization participants identified a lack of clarity about the mechanisms of execution especially when working with such complex patients. Although the documents emphasized the importance of the role of patients in managing their own care, leaders and providers found many barriers to this for example the low buy-in from some patients and the lack of access to medical records. While having the voice of the patients on HL committees was acknowledged in all HL documents, leaders and providers highlighted that most of the time the patients do not have a voice and even when they do, a single patient will never represent all patients. Conclusions: (Comprising Key Findings) Patient-centeredness is a primary goal of HLs. However, in practice, participants struggled to clearly incorporate and execute patient-centeredness in the design, implementation, and evaluation of HL. Discussion: Our case studies provide analysis on how operationalization of patient-centeredness and engagement can be a challenge to integrated care models. The results can help inform decision-makers on how to better deliver patient-centered integrated care. Lessons Learned: Successful implementation of complex interventions like HL requires detailed clarity on the operational level alongside the policy level. Limitations: Our findings are limited to three HLs in Ontario, however, the results highlight an important discrepancy between discourse and action that may be relevant for other patient-centered integrated care initiatives. Suggestions for Future Research: Future work can examine the challenges in operationalizing a patient-centered approach to integrated care and test interventions that support the engagement of complex, high-needs patients.