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

Sammanfattning

Across low- and middle-income countries, digital health registries are increasinglyintroduced to strengthen health information systems and support coordinated care,yet their early-phase development remains understudied, particularly in centralizedhealthcare contexts. This study examines how a national digital health registry isdeveloped and established during its early phase, using the design and prototypingof a cleft lip and palate registry in Rwanda as an empirical case. Data was collectedthrough a qualitative single case study combining semi-structured and exploratoryinterviews with iterative prototype feedback sessions involving clinicians, registrydevelopers, NGO actors, and policymakers. The findings show that some adoptionbarriers, including documentation workload and infrastructure constraints, can beidentified and addressed through design choices before deployment, a process thestudy describes through the concept of anticipatory adoption, while others, such asdouble entry, can be anticipated during this phase but not resolved through designalone. The design process also revealed trade-offs between dataset scope and dataquality, standardization and local fit, and top-down implementation versus bottomupclinical involvement. For long-term sustainability, early institutional anchoringwithin national structures is identified as essential, as formal recognition at the nationallevel shifts registry use from voluntary to required. Sustained use howeverdepends on continuous engagement through training, feedback and incentives, andexplicit planning for long-term ownership must be addressed during developmentrather than treated as a post-project concern. Together, the findings suggest thatthe early-phase development of sustainable digital health registries in centralizedcontexts requires three complementary conditions: bottom-up clinical involvementin design, top-down institutional anchoring in implementation, and continuous engagementwork at all levels.