Dual-Perspective Modeling of Patient Pathways: A Case Study on Kidney Cancer

Patient pathway has become a key concept in the organization of healthcare. However, the materialization and operationalization of pathways often focus on work processes of health personnel, clinical decision-making, and deadlines, contradicting the strong patient-oriented perspective that is inherent in their definition. In this paper, we introduce a patient-centered perspective of kidney cancer pathways, reporting on a dual-perspective strategy to map and model patient pathways. Utilizing a multi-method approach, we map and model pathways from the perspectives of both healthcare personnel and patients and investigate the feasibility of the Customer Journey Modeling Language (CJML) for modeling patient pathways. To prevent confusion, the planned pathway as seen from the hospital perspective and the actual pathway experienced by the patient are referred to as ‘pathway’ and ‘journey’, respectively. In the paper, we describe methods to engage with healthcare professionals and patients to collect the necessary information to create precise models, and we show how precise modeling of patient pathways requires the integration of several information sources. Moreover, the study underlines the value of examining pathways from a dual perspective, as the two perspectives corroborate and supplement each other, illustrating the complexity of patient journeys. Finally, the findings provide insights into the feasibility of CJML, firstly underlining that the usefulness of visual models is context-dependent, and secondly, suggesting that the methods and subsequent visualizations may be useful as organizational, instructional, and communicative tools.