Cancer Data Systems in Africa: A Scoping Review

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PURPOSE Cancer is the third most common cause of death in Low- and Middle-Income Countries (LMICs), and rates are rising quickly. Standardized, high-quality cancer registries are essential for the research and policy needed to reduce cancer incidence and death. To date, best practices and challenges for African cancer registries are unclear, limiting our ability to optimally inform these stakeholders. METHODS We conducted a scoping review that evaluated challenges, use of, and opportunities for improvement of Cancer registries in Africa. The review followed the PRISMA guidelines. Databases included in the search were PubMed, Web of Science, ProQuest, Google Scholar and Scopus. Peer-reviewed studies published between January 2018 to August 2023 were included. A cross-sectional, stakeholder-informed qualitative approach was used to validate the scoping review findings and establish data needs and desired targets for data availability, analysis, and use. RESULTS Among the 212 peer reviewed articles initially identified, 28 were eligible for review and documented either Facility Based Cancer Registries (FBCRs) and/or Population-Based Cancer Registries (PBCRs) across 20 African countries. Major challenges identified included inadequate legislation and/or implementation, funding, office space, staffing, hardware, software, and capacity building; information contributed by limited departments; biased data collection; lack of accurate records and lack of sample archiving for research. Identified remedies, including from the African Cancer Registry Network (ACRN), were: frequent and longitudinal needs assessment, engagement of trained data registrars, continuous on-site training, alternative data sources, use of accession numbers to enhance linkage between registry data and pathologic samples, creation of an administrative structure to promote logistical success and good governance, enhanced government support, partnerships for external support, establishing jurisdiction of operation. CONCLUSION The challenges identified from the few countries implementing their registries can be broadly grouped under lack of legislative frameworks, inadequate finances, limited physical infrastructure, incompetent human resource, incomplete data, and inadequate data demand and use. The successes of African countries with advanced registries and the best practices proposed by ACRN provide substantial grounds for the establishment of effective FBCRs and PBCRs in LMICs.

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