Learning from the Active Hospital-Based Cancer Registry in India: An Ethnography Study

Abstract

Purpose: The increasing incidence of cancer in low- and middle-income countries highlights the need for better cancer data management. Hospital-based cancer registries (HBCRs) enhance patient outcomes by managing cancer data, reviewing clinical performance and allocating resources. However, sustainability remains a challenge despite government initiatives. Therefore, this study documented the functionalities, core processes, and team involvement of active HBCRs in India, aiming to identify factors that facilitate their sustainability. Methods: An ethnographic study was conducted in two Indian hospitals, one specializing in cancer care and the other offering multispecialty services, focusing on their HBCRs. The study involved process observations, interviews, and record reviews, with thematic analysis guided by ethnographic investigations. The staff managing the HBCRs were key participants. Results: The findings are categorized into three themes: (1) existing management strategies and infrastructure, (2) the implementation process, and (3) the sustainability and scalability of the registry model. This study highlights the key factors necessary for a sustainable HBCR, including human resources, training, and a well-structured management system. The involvement of oncologists and physicians, funding, qualified staff, adequate space, and digitalization are crucial for success. Data management errors can be minimized through training, while interdepartmental coordination and data quality play essential roles. Conclusion: This study offers critical insights into enhancing cancer surveillance systems, thereby improving cancer care and public health interventions in India and similar contexts worldwide. Policymakers and healthcare practitioners can leverage these findings to strengthen existing systems and address the growing burden of cancer effectively.