Upgrading chronic care : exploring challenges in rheumatology care management

Sammanfattning: Introduction: The literature on chronic care describes a gap between what patients need and what healthcare provides. In rheumatoid arthritis, major medical advances have taken place in recent years which have made it possible to successfully treat more patients. However, these advances have led to organizational challenges in the man-agement of healthcare delivery. Aim: To explore the challenges in rheumatology care management by studying users’ perceptions of the Feed Forward System (FFS) principles (Study I), simulation model-ing as a tool for chronic care improvement (Study II and Study IV), and a way to test new chronic care processes (Study III). Method: Qualitative and quantitative research methods were used to explore the chal-lenges faced by providers and their patients at Swedish rheumatology clinics. Methods include interviews, a focus group discussion, questionnaires, a meta-analysis, and simu-lation modeling. Content analysis was used to analyze qualitative data. Findings: Patients became more involved in and informed about their own care when they used the FFS. Providers said that it offered an overview of past treatments and their effects, as well as support for treatment decisions (Study I). Simulation modeling provided a way to test the effects of moving from time-centric to need-centric processes in rheumatology care (Study III). Simulation modeling was also shown to support healthcare improvement by visualizing the effects of planned changes, communicating these changes to management, and engaging providers to explore and test innovative solutions (Study II and IV). Discussion: Feed Forward Systems and simulation modeling represent an upgrade of how to manage the challenges inherent to rheumatology care. FFS encourage patient empowerment, self-management, and shared decision making, as well as support learn-ing for patients and providers alike. Simulation modeling helps manage complex prob-lems and facilitates learning for providers and managers. This is enabled through the shared features of FFS and simulation modeling: (1) the transformation of data into knowledge, (2) a mutual communication platform for multiple stakeholder involve-ment, (3) provision of real time feedback that enables action in clinical practice, and (4) self-correction that generates learning opportunities. Conclusion: The introduction of FFS and simulation modeling has implications at the clinical level and the patient level of rheumatology care. Upgrading chronic care where it is delivered, at both levels, can contribute to improvements in care management – changing the healthcare system from within.