Anticipating Adoption: Developing a National Digital Health Registry in a Centralized Healthcare System Design, Adoption, and Governance in the Early-Phase Development of a National Cleft Lip and Palate Registry in Rwanda

Abstract

Across low- and middle-income countries, digital health registries are increasingly introduced to strengthen health information systems and support coordinated care, yet their early-phase development remains understudied, particularly in centralized healthcare contexts. This study examines how a national digital health registry is developed and established during its early phase, using the design and prototyping of a cleft lip and palate registry in Rwanda as an empirical case. Data was collected through a qualitative single case study combining semi-structured and exploratory interviews with iterative prototype feedback sessions involving clinicians, registry developers, NGO actors, and policymakers. The findings show that some adoption barriers, including documentation workload and infrastructure constraints, can be identified and addressed through design choices before deployment, a process the study describes through the concept of anticipatory adoption, while others, such as double entry, can be anticipated during this phase but not resolved through design alone. The design process also revealed trade-offs between dataset scope and data quality, standardization and local fit, and top-down implementation versus bottomup clinical involvement. For long-term sustainability, early institutional anchoring within national structures is identified as essential, as formal recognition at the national level shifts registry use from voluntary to required. Sustained use however depends on continuous engagement through training, feedback and incentives, and explicit planning for long-term ownership must be addressed during development rather than treated as a post-project concern. Together, the findings suggest that the early-phase development of sustainable digital health registries in centralized contexts requires three complementary conditions: bottom-up clinical involvement in design, top-down institutional anchoring in implementation, and continuous engagement work at all levels.