Policies, Practices and Partnerships for Collaborative Data Sharing

BACKGROUND:  The Florida Department of Health (DOH) and Florida Cancer Data System (FCDS) linked registry data with breast cancer patients’ hospital electronic medical records (EMRs). Integration of EMR systems is becoming increasingly important for management of patient data, especially in the context of broad national health care reform. EMR linked to cancer registry data enables research on effectiveness of treatment and other patient-centered outcomes. However, implementation barriers must be resolved to perform EMR linkages.

METHODS:  A partnership among the Florida Department of Health, Florida Cancer Data System, and a large Florida hospital system was established to develop methods for hospital EMR extraction and transmission. The project dataset include EMR 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. The hospital system assigned staff to identify data for patients’ treatment profiles, medication orders, discharge reports, and clinicians’ notes for patient health history from various hospital computer systems. EMR 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 EMR transferred 12,804 tumor records to FCDS for a match with 11,506 breast cancer patients. Hospital staff identified EMR 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.

CONCLUSIONS:  Incorporating patient EMR in linkages with cancer registries is feasible when hospital leadership makes it a priority and dedicates experienced staff. The mechanisms for extracting and processing hospital EMR data will vary between EMR systems. Thus, data linkage procedures need to establish compatibility of data systems within hospital networks and the state registry. Data linkage policies and procedures are also needed to address patient confidentiality concerns. Policies and procedures for sharing data must address how to protect patient confidentiality, define the legal obligation for reporting data, and ensure secure means of data transmission through data sharing agreements with third party stakeholders.