By: Kennedy Ojowi
Kenya’s healthcare system struggles to manage Sickle Cell Disease (SCD) due to uncoordinated data systems. Many healthcare facilities rely on paper records, while others use electronic systems that cannot communicate with one another. This lack of coordination prevents efficient patient tracking, makes it harder to allocate resources effectively, and limits the availability of reliable data for decision-making. These gaps leave patients underserved and the healthcare system ill-equipped to address SCD comprehensively.
The fragmented data systems have serious consequences. Thousands of children are born with SCD every year, and 15% of them die before their fifth birthday due to poor access to timely care. Hospitals face challenges in tracking patients and ensuring continuity of treatment, leading to wasted resources and poor outcomes. Without reliable data, policymakers cannot make informed decisions, researchers struggle to find accurate information, and advocacy efforts lack the evidence required to push for better support.
The solution is to create a centralized Sickle Cell Disease Registry that integrates data from all healthcare facilities. Using a proven digital platform like DHIS2, the registry would connect existing systems and provide a unified source of information for patient tracking, treatment coordination, and policy development. This system would address the current fragmentation by ensuring that all healthcare facilities, whether paper-based or digital, can contribute meaningful data.
This effort will require collaboration among multiple stakeholders. The Ministry of Health will lead policy development and provide resources for implementation. Healthcare facilities will need to adopt standard data practices to ensure accurate reporting. Donors and international partners can support funding and technical expertise. Technology providers will supply tools and training for digitization. Researchers and advocacy groups will rely on the registry to develop better care models and policy recommendations. Finally, patients and their families are essential stakeholders whose needs must guide the system’s design.
With a centralized SCD registry in place, healthcare providers will have the tools they need to offer timely and accurate care. Children with SCD will have a better chance of surviving and thriving, thanks to improved care coordination and access to treatment. Policymakers will be able to use comprehensive data to allocate resources more effectively and address regional disparities. Researchers will have the evidence they need to design better interventions, ultimately improving care standards.
Other countries have successfully addressed similar challenges. Uganda and Ghana, for example, have implemented disease registries that improved patient tracking and informed policy development. Kenya’s existing use of DHIS2 in other health programs demonstrates that this platform is already trusted and feasible for implementation. These examples show that creating a centralized registry for SCD in Kenya is both practical and achievable.
The current inefficiencies in managing SCD data are costly. Misallocated resources, delayed treatments, and preventable deaths result in economic losses for families and the healthcare system. Investing in a centralized registry would reduce these inefficiencies and lead to better health outcomes, ultimately lowering the financial burden of care. Additionally, a well-maintained registry could attract funding for research and international partnerships, further justifying the investment.
Four policies are crucial to making this project a success:
- Support for Digitization: Financial and technical assistance should be provided to help healthcare facilities transition from paper records to digital systems.
- Data Accountability Requirements: Facilities should be required to submit routine SCD data, ensuring consistent reporting across the country.
- Integration with Health Coverage Goals: The SCD registry should be linked to Kenya’s broader health coverage strategy to ensure long-term funding and sustainability.
- Data Protection Frameworks: Clear guidelines must be developed to protect patient privacy and ensure that data is used responsibly and ethically.