Yes. To access data for research, ADVANCE requires the execution of a data agreement (Data Use Agreement, Data Transfer Agreement, etc.). The data agreement provides the legal obligations involved in data use along with outlining the specific data to be used and the purpose of using the data.
The data agreement is reviewed by an organization’s legal, compliance or contracts department and is signed by an institutional representative with signing authority.
Our data represents a large, nationwide patient population, largely comprised of patients treated in community-based health centers. This electronic health record-based data warehouse includes demographic information, diagnoses and conditions, laboratory results, procedures and interventions, vital signs, medications, patient-reported data, and more.
For more information visit our ADVANCE Data page.
Because ADVANCE is bringing together data on millions of 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 Data Warehouse (DW) 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).
