Because ADVANCE is bringing together data on several million patients, it is critical that the data are protected and kept confidential. ADVANCE is committed to assuring the privacy, security, and confidentiality of health data and ensuring that the data are used appropriately. ADVANCE protects patient confidentiality and minimizes risks by following HIPAA privacy practices, enforcing data use and sharing policies, having all research activities reviewed by an Institutional Review Board, and securing the physical network and data storage. In addition, all patients receive a notice of privacy practices to inform them about how their data are used by participating community health centers for research purposes.
All data stored in the ADVANCE Research Data Warehouse (RDW) are de-identified. Crosswalks to actual patient identifiers are kept in a secure location for patient de-duplication during data loads and for use by analytical staff as needed for approved protocols (e.g., re-identification for a clinical trial).