Exploring the Complexity of Real-World Health Data Record Linkage-An Exemplary Study Linking Cancer Registry and Claims Data

PurposeRecord linkage based on quasi-identifiers remains an important approach as not every data source provides a comprehensive unique identifier. In this study, the reasons for the failure of a linkage based on quasi-identifiers were examined. Furthermore, informed algorithms using information on gold standard links were developed to investigate the potentially achievable linkage quality based on quasi-identifiers.MethodsThe study population includes patients from an antidiabetic cohort from German claims and colorectal cancer patients from two German cancer registries. Linkage algorithms were applied using information on gold standard links. Informed linkage algorithms based on deterministic linkage, logistic regression, random forests, gradient boosting, and neural networks were derived and compared. Descriptive analyses were performed to identify reasons for the failure of linkage, such as discrepancies between data sources.ResultsA gradient boosting-based linkage approach performed best, achieving a precision (positive predictive value) of 77%, a recall (sensitivity) of 81%, and an F*-measure (combining precision and recall) of 64%. Of 641 patients in GePaRD, 8% were not uniquely identifiable using birth year, sex, area of residence, and year and quarter of diagnosis, whereas 33% of 42 817 cancer registry patients were not uniquely identifiable with these quasi-identifiers.ConclusionsLinkage of German claims and cancer registry data based on quasi-identifiers does result in insufficient linkage quality since subjects cannot be uniquely identified. It is advisable to use unique identifiers from a subsample, if available, to derive informed linkage algorithms for the entire sample. In this case, the machine learning technique gradient boosting has been found to outperform other methods.