A cornerstone of the project’s success has been developing and implementing a province-wide patient registry, significantly enhancing efficiency in tracking and managing individuals throughout screening, viral load testing, and treatment. It ensures that individuals who have not yet been screened or treated are identified and followed up. Despite being more complex and time-consuming than anticipated, developing a comprehensive registry proved essential in overcoming logistical barriers and improving patient tracking efficiency. This well-structured registry ensures individuals needing screening and treatment are identified and consistently followed up.
By leveraging Mongolia’s national registration and social support systems, our patient registry enables linkage with local social workers and healthcare facilities, allowing for a more precise and coordinated approach to locating individuals needing testing and care. It also incorporates active follow-up mechanisms, enabling Hepatitis Coordinators to track and engage “missing” patients, particularly those who have relocated or were previously unaccounted for. The availability of real-time data updates across multiple screening sites further strengthens its effectiveness by quickly identifying treatment gaps and ensuring necessary interventions are provided without delay. This comprehensive tracking model has resulted in a 3.9-fold increase in efficiency, demonstrating the critical role of targeted data management in achieving hepatitis elimination goals.
Building the 44,402-person patient registry was much more complicated than we ever expected. It was overwhelming, time-consuming, and tedious. We cross-referenced multiple digital provincial patient registers and handwritten lab records at 14 clinics and the provincial. These included the provincial database, the provincial health department database, the national insurance office database, and paper lab records at each clinic and with the provincial hepatologist. It took 18 months to complete, finishing in June 2024. Since it was completed, the following seven months produced 44% of the project’s accomplishments. This is 3.9 times more efficient with the complete registry than without it.
While the patient registry has been essential in providing patient details to pinpoint individuals and establish targets, the platform on which it was created is inadequate. We are currently working with Homie Razavi, Helen Nde and the CDA Foundation to migrate our registry into RedCap for the completion of Phase 2. This will enable more accurate treatment details for quicker HCV elimination, allow us to clean and analyze the data accurately, and prepare us for creating the patient registry for Phase 3 in Govisumber province. We are immensely grateful for this donation of time and expertise from the CDA Foundation for this support to move to a new platform. It is transformational for our project.
