AMIA Annu Symp Proc - Oncoshare: lessons learned from building an integrated multi-institutional database for comparative effectiveness research.

Tópicos

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Resumo

Comparative effectiveness research (CER) using observational data requires informatics methods for the extraction, standardization, sharing, and integration of data derived from a variety of electronic sources. In the Oncoshare project, we have developed such methods as part of a collaborative multi-institutional CER study of patterns, predictors, and outcome of breast cancer care. In this paper, we present an evaluation of the approaches we undertook and the lessons we learned in building and validating the Oncoshare data resource. Specifically, we determined that 1) the state or regional cancer registry makes the most efficient starting point for determining inclusion of subjects; 2) the data dictionary should be based on existing registry standards, such as Surveillance, Epidemiology and End Results (SEER), when applicable; 3) the Social Security Administration Death Master File (SSA DMF), rather than clinical resources, provides standardized ascertainment of mortality outcomes; and 4) CER database development efforts, despite the immediate availability of electronic data, may take as long as two years to produce validated, reliable data for research. Through our efforts using these methods, Oncoshare integrates complex, longitudinal data from multiple electronic medical records and registries and provides a rich, validated resource for research on oncology care.

Resumo Limpo

compar effect research cer use observ data requir informat method extract standard share integr data deriv varieti electron sourc oncoshar project develop method part collabor multiinstitut cer studi pattern predictor outcom breast cancer care paper present evalu approach undertook lesson learn build valid oncoshar data resourc specif determin state region cancer registri make effici start point determin inclus subject data dictionari base exist registri standard surveil epidemiolog end result seer applic social secur administr death master file ssa dmf rather clinic resourc provid standard ascertain mortal outcom cer databas develop effort despit immedi avail electron data may take long two year produc valid reliabl data research effort use method oncoshar integr complex longitudin data multipl electron medic record registri provid rich valid resourc research oncolog care

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