Expert patient engagement in the assessment and reorganization of clinical pathways

The paper describes how the use of a participative method of analysis of practices can lead to changing the clinical pathways of two chronic diseases and to promoting a different relationship between patients and organization. The focus is on the critical step between the data gathering phase and the phase of shared sense making, as a basis for the transformation of practices. In collaboration with the relevant stakeholders (healthcare personnel, expert patients and hospital bioethical researchers) two instruments were chosen to analyze practices: a revised version of Proactive Analysis and the Analysis of Decision Focal Points of the clinical pathway. The integrated use of both instruments highlighted a) certain ambivalences in the representation of the chronic patients as adults, and their consequences in the choice of treatment; b) the sense of belonging to the community of care as an important construct for the patient’s quality of life. Regarding the research process, we analyzed the group dynamics with reference to the effects of acquiescence and acting out behaviors on maintaining the collaborative framework of the research. The results are relevant to the design and maintenance of collaborative management of adult chronic patients who are high users of healthcare services