The expression “patient’s journey” indicates the care pathway the patient must do while facing and treating a disease. As in every journey, there are a starting point, encounters, crucial moments, discoveries and obstacles, until an end point.
The scenario of this journey is the modern healthcare system, composed by complex services employing several professional figures grouped according to professional experience, several care settings, a relational network based on the dominant organizational set-up. During the years, each one of these divisions has acquired more and more autonomy, in favor of a specialized management that do not have an overview.
In fact, in the current scenario healthcare professionals have a partial overview, they focus more on the activities they control, and barely observe and supervise all the pathway phase. The traditional approach to the healthcare assistance problems solving is that of work with the single unit to face problems and peculiarities under their competence.
On the contrary, patients have the overview of the care pathway: they live it as protagonists, crossing several care settings, meeting different professional figures and everyday managing disease. From their perspective it is possible to comprehend the care pathway. Working on the patient’s journey means to have a special access in the disease management, to collect data and information in order to comprehend critical areas and how to project the pathway, to improve care quality and efficiency.
The methodology used to reconstruct patient’s journey derives from process-mapping. One of the innovative aspects of this approach is that the pathway is not reconstructed by management skills people outside the care context, according to a top-down approach: on the contrary, patient’s journey is a tool for healthcare professionals and patients (bottom-up approach), that is who directly lives the care pathway and, through this journey – have the possibility to analyze all the healthcare activity, striving to identify eventual critical aspect and areas to improve.
The reconstruction of the care pathway includes collection of information relative to “what really happens” and not to “what people want to happen”. Patient’s journey aims to reconstruct how care activities occur and in which sequence.
There are several methods to collect data, each one with its limits and advantages. To choose the more appropriate one, it requires a careful planning and the involvement of expert facilitators, if possible outside the care pathway – to avoid that some critical aspects will be omitted during the journey reconstruction, or that people involved will rest on specific aspects.
Having a map ensures that all the advantages are comprehensible not only for professionals, but also for who is directly involved in the care pathway and for people who, without having indirect implications, are interested in the theme (decision-makers, public opinion, and so on).
Patient’s journey highlights how many care pathways have become complex and cumbersome, while mapping helps to find possible actions of change, focusing on critical aspects and allowing to work on solutions. Anyway, it is important to not reduce this precious tool to the mere chronicle of the single activities (disease-centered approach), that is the typical risk when only professionals realize patient’s journey; simultaneously, there is also the risk to see only the perspective of patients and caregivers.
According to ISTUD Foundation, the most appropriate methodology to analyze the patient’s journey is the combination of several methodologies: to reconstruct the pathway, in order to outline the journey collecting data relative to professionals, activities, structures, and so on; this together with the collection of narratives through Narrative Medicine, in order to catch the core of the care experience, emotional, relational, social aspects of the journey. In this way we pass from the mere “pathway reconstruction” to the research of the sense of the journey.
The table was re-elaborate starting from Trebble et al., 2010, “Process mapping the patient’s journey through healthcare: an introduction”, BMJ 341:c4078
