Non-Communicable Diseases (NCDs) continue to be a major concern in Trinidad and Tobago because of a high and increasing prevalence of risk factors in the population. NCDs such as diabetes, heart disease, high blood pressure and cancer, etc. have been reported as the leading cause of death averaging over 75%. Since 2017, the Ministry of Health (MoH) of Trinidad and Tobago, through its National Strategic Plan for the Prevention and Control of Non-Communicable Diseases, has acknowledged that the lack of comprehensive, timely, and reliable data remains a critical constraint to effective decision-making and national health planning. Persistent challenges such as outdated data resources, inconsistencies across sources, the absence of a national surveillance system, weak data integration among Regional Health Authorities (RHAs), and limited peer-reviewed research have contributed to inefficiencies and hindered evidence-based policy development. Despite substantial investment, these data governance limitations have led to reduced healthcare quality, inefficient resource use, and missed opportunities for data-driven prevention strategies, ultimately impeding the country's pursuit of digital self-determination in healthcare.
This study investigates how the cultural practices and data-related behaviours of informal, formal, and cross-boundary actors collectively referred to as interstitial groups influence the formation of a comprehensive health data strategy. It further explores how these practices shape Trinidad and Tobago's pathway toward digital self-determination and, ultimately, digital sovereignty. Using Cultural-Historical Activity Theory (CHAT) as the analytical lens, this qualitative study examines contradictions within healthcare data activity systems to identify opportunities for regulatory, institutional, and cultural transformation. By strengthening the governance and perceived value of preventive health and lifestyle data, this research aims to inform digital health transformation strategies in Trinidad and Tobago and other Small Island Developing States (SIDS). As regional leaders, such as Prime Minister Mia Mottley, call for digital sovereignty across the Caribbean, this study addresses the critical question: Where do we begin?