Frequently Asked Questions
INSIGHT data is refreshed quarterly. During these quarterly refreshes, data over a 10 year look-back period is checked for overall quality. While we have data starting in 2012, we recommend, when possible, researchers use data within the 10 year look-back period for highest possible data quality.
INSIGHT Central Data Repository composed of Limited Data Set (LDS) data from all data contributing sites is stored and maintained in Amazon Web Services (AWS).
When a researcher obtains all required regulatory and governance approvals for use of INSIGHT data, a specific data set is created for them and stored in Data Core. Data Core is a secure data storage environment hosted by Weill Cornell Medicine (WCM) created to store data in a secure, customizable space. The IRB approved study team will be granted access to this data environment, and will have access to data limited in accordance with access restrictions from data use agreements, IRB protocols, and other constraints relevant to the type of data. Access will be restricted to investigative team members with current HIPAA, Good Clinical Practice (GCP) and human subjects’ protection certification.
No, INSIGHT does not require a single IRB. Studies that utilize data from our Central Data Repository containing only a Limited Data Set (LDS) are covered under the INSIGHT Master Protocol on file with BRANY. As such, studies fitting this description only require an IRB approval from their local institution. However, should a researcher require data elements not contained in our Central Data Repository, the use of a single IRB may be necessary.
On average the approval process takes 10 business days from the data request submission. This process includes an initial research call with our operations team, a complimentary prep-to-research query, and review and approval by our INSIGHT research review committee. This timeline may vary based on the complexity of the request, levels of approvals required, and turnaround needs.
Yes, INSIGHT provides complementary prep-to-research queries to investigators with aggregate counts of their cohort. Additionally, approved studies will receive a customized letter of support for researchers to include in their grant application.
INSIGHT is able to link with fields available in our common data model including zip code and census tract data. With the proper regulatory approvals, INSIGHT is able to link on identifiable data (e.g, registry data, claims data, and other study data).
If your required data is commonly found in electronic health records, INSIGHT can work with its data contributing sites to determine availability. This is on a case-by-case basis and is not guaranteed.
In accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule, covered entities may disclose a limited data set (LDS) for public health activities with the understanding that the covered entity must have a data use agreement to disclose the LDS. A LDS includes protected health information, but excludes direct identifiers of an individual or their relatives, employers, or household members. As a covered entity, the INSIGHT CRN is able to provide a LDS to investigators for research purposes and emergency preparedness activities. Since the LDS does not include any direct identifiers, patients do not provide consent.
