Unlocking the potential of electronic medical records for patient-centered outcomes research – what policies are needed to facilitate clinical and administrative data sharing?

Background: The Florida Department of Health (FL DOH) and Florida Cancer Data System (FCDS) linked cancer registry data with breast cancer patients' hospital electronic medical records (EMRs). Linking EMRs to cancer registry data enable patient-centered outcomes research. However, technical barriers must be resolved to perform linkages. Methods: The FL DOH partnered with a Florida hospital to link their EMRs for patients diagnosed with and/or treated for breast cancer between 2007 and 2011. Medical ICD-9-CM codes were used to identify patients from EMR data. Hospital staff identified patient treatment profiles, medication orders, discharge reports, and clinicians' notes. EMR data were transmitted through FCDS' Secure File Transfer Protocol and matched with registry data. Pathology and treatment data were processed to remove sensitive elements. Results: Hospital staff identified EMRs from within its network of providers, inpatient and outpatient care units, billing departments, and external pharmacies. These data were processed in a flat file format that the registry could receive and interpret. Data for 11,506 breast cancer patients were matched. Discussion: Incorporating cancer data from EMRs into statewide disease registries is feasible and may be ongoing if hospital leadership makes then a priority and dedicates staff with data linkage expertise. Data linkage policies and procedures are needed to ensure patient confidentiality. Such policies and procedures should: (1) address how patient confidentiality is protected; (2) define the legal obligation for reporting data; (3) define data ownership issues; (4) establish compatibility of data systems within hospital networks and state registries; and (5) ensure secure means of transmission through data sharing agreements.