Data Overview

The INSIGHT Central Data Repository is a trusted broker that collects, aggregates, and de-duplicates Limited Data Sets collected from the seven INSIGHT data contributing sites. INSIGHT data is accumulated from visit records spanning from 2010 to present day. INSIGHT maintains a series of processes and procedures to ensure that data storage, data access, data quality, and data security and privacy are upheld to the highest standards.

Data Infrastructure and Access

INSIGHT uses a cloud-based infrastructure facilitated by Amazon Web Services. Our repository boasts scalability to accommodate increasing data volumes while facilitating query capabilities. Access to INSIGHT data is restricted solely to IRB-approved research personnel. Researchers access INSIGHT data through Data Core, a secure, scalable computing and storage environment within which users can share access to a collection of data sets and process the data with a variety of software tools, while meeting appropriate regulatory requirements to protect data.

Data Quality

As one of eight PCORnet® networks, INSIGHT must adhere to rigorous two-stage process set forth by PCORnet. The first stage examines data for adherence to the standard organization and representation of data for PCORnet; completeness, including that diagnosis codes are aligned; plausibility to ensure that the values make logical sense; and persistence to ensure that records are not disappearing between refreshes. The second stage of curation establishes the level of data quality for a specific study purpose. The Coordinating Center for PCORnet® examines accessible data for patterns to identify potential quality concerns for key variables within a given study or population. As a result, the strengths and weaknesses of data available via PCORnet for specific research use are well known and communicated with transparency at the outset of every research effort.

Data Security and Privacy

Data security and privacy are of the utmost importance to INSIGHT. Approved users and data recipients are required to follow a standardized set of security protocols when accessing person-level data from INSIGHT. Sites and data recipients that handle protected health information (PHI) must protect patient privacy and data security in accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy and Security Rules, including but not limited to conducting a security risk assessment consistent with the risk analysis provisions required by the HIPAA Security Rule and adopting appropriate policies and procedures to safeguard all INSIGHT Data Sets that each site creates, stores, or receives.