Abstract
INTRODUCTION: Patients with serious conditions face complex, long-lasting patient journeys involving multiple healthcare providers. Research shows that these journeys are frequently perceived as fragmented, with significant challenges in communication and information flow. However, there is limited knowledge about the organisational and informational aspects linked to good and poor experiences. This study investigated critical factors in cancer journeys, focusing on communication and the informational and organisational elements shaping patient experiences. METHODS: The critical incident technique was used to identify positive and negative factors in cancer patient journeys. People with cancer and their next-of-kin were recruited through Norway's national cancer organisation. Patient episodes were collected from 41 participants via digital workshops combined with questionnaires and supplemented by in-depth interviews. Critical incidents were extracted using specific analytical criteria. RESULTS: A total of 187 critical incidents were identified, including 81 positive and 106 negative. Content analysis revealed 12 categories of incidents. Positive incidents were linked to effective communication, timely information, and well-coordinated care, particularly through cancer pathways. Negative incidents often involved communication delays, insensitive information delivery, and poor coordination among healthcare providers. Notably, around 40% of the negative incidents stemmed from fragmented health services or a lack of progress, often forcing patients to act as messengers. CONCLUSION: By examining critical experiences, this study highlights key areas for improving cancer care. Timely information and clinical empathy when delivering sensitive diagnoses are essential. Healthcare providers must coordinate services more effectively to prevent patients from intervening to ensure care progress. PATIENT OR PUBLIC CONTRIBUTION: Patients' stories formed the core data. The public contributed to recruitment, while patient feedback informed the workshop design.