Table 2:
Challenge | Opportunity |
---|---|
Dependence on administrative/billing data that may not have high clinical accuracy | Improve data quality by validating codes to appropriately identify key diagnoses |
Difficulty validating initial coding process based on preexisting documented diagnosis codes | Multidisciplinary discussions and agreements on data elements, such as ICD10 and ICD-O-3 codes, prior to submission to large databases Reduce variability in sarcoma nomenclature and cancer classification |
Errors in large databases may be amplified for rare diseases, such as Sarcoma | Improve on current database architecture models to make population-based registries more clinically relevant Utilization of sarcoma-specific databases with more granular, clinically relevant data |
Data silos created due to lack of information sharing amongst multiple institutions and databases | Automated aggregation of real world data (both structure) supplemented by NLP-assisted manual curation of unstructured clinical documentation such as the ASCO CancerLinQ initiative and Flatiron Health’s database. Linkage to administrative databases to validate information in real world evidence based datasets. |