FAQ About Privacy
How much of the information that we enter into the CORI reporting software gets sent to the National Endoscopic Database?
The data that you send to the NED includes all data entered about procedures (including the history and physical exam) but only limited amounts of data about the patient and staff members. Staff information is limited to a unique identifier along with non-identifying information such as gender, specialty, and year graduated. Additional data is known about each provider by the site services team at CORI as part of operational procedures, but this is not linked to the NED. Patient information is limited to the patient's date of birth, race and ethnicity, gender, area of residence (but not the complete address), date of procedure, and payer type. In addition, each procedure is labeled with a unique identifier for the site at which the procedure is performed. In order to support the reporting software, the CORI site services team keeps information about each site. Some of this information is used in research, such as the site type (academic, community, HMO, VA), facility type (office, hospital, ambulatory), and location (by state and region).
Why do you collect a limited data set, instead of a completely de-identified one?
A completely de-identified data set cannot include the date the endoscopy procedure was performed. CORI analysts use this date of service to learn about the number of procedures performed during a time period, to study trends in indications, diagnoses or therapies over time, and to study the use of repeated procedures. In addition, the date of service allows for performance of quality control on the data.
Because you send this date of service, your data is considered to be a Limited Data Set (LDS) and not fully de-identified data. That means that the most obvious identifiers have been left out, but the risk to the patient of being identified, although very small, is still present. An LDS is considered identifiable health data and must be managed with the same security requirements as data that contains names, addresses, and other obvious identifiers. This includes the prohibition of researchers at CORI from trying to re-identify or contact your patients. However, when only an LDS is captured, patients may not have to consent to the use of their data.
How do you use the race and ethnicity data that you collect?
Race, ethnicity, age, gender and payer type are sometimes used as variables in CORI studies. Most of the time, however, they are used to describe the population that is represented by the data, to give a "snapshot" of the population. Knowing how closely the study population represents that of the whole country helps everyone understand how well the study results apply to all people.
Is it possible to identify a patient in the CORI database? What about in publications?
All of the primary patient identifiers remain at the local endoscopy sites and are not sent to CORI. Data that CORI does NOT receive include the patient's name, social security number, medical record number, street address and other contact information. While it is highly unlikely, it might be possible in extreme circumstances to identify a patient from a combination of their procedure date, procedure site number, and unusual findings on the history or examination. That is why CORI can't consider the data that you send to be fully de-identified and why strict security procedures are used for managing that data. Information about individual patients is never published, however. The purpose of CORI research is to report on populations, not on individuals, so all data is reported in an aggregate fashion.
Is it possible to identify a practice in the CORI database? What about in publications?
In order to maintain the reporting software, CORI staff must know about the installed practice and each is given a unique identifier to help in that process. With each procedure performed, the unique identifier for the site is recorded for several reasons. One reason is to perform quality control, monitoring data integrity and site reporting compliance; a second reason is that sites sometimes want data specific to their sites; and third, CORI also performs prospective research with sites who agree to participate in specific projects and must be able to identify their data. Site information, such as site type, facility type and region, is used for the "snapshot" of the research base which allows scientists to assess the generalizability of findings. Names of specific sites are never published unless those sites have agreed to that during participation in a prospective research study.
In addition, CORI works with various industry partners and it is policy not to tell those industry partners which hospitals or clinics are using the CORI software without permission from the site for each disclosure.
Our site has an ethnically unique patient population. Could we be identified on the basis of that?
It is unlikely that your site could be identified based on its unique population or any other characteristic of the site such as its location or site type. CORI only reports on patients and sites in an aggregate fashion. Individual centers may be described in prospective research, but only after you have agreed to participate in the study.
Who might be a recipient/consumer of the data that we send to the CORI warehouse? What purposes might it be used for?
Most analysis of the data that you send to CORI is performed by CORI's data analysts, who are employees of Oregon Health & Science University (OHSU). Results are reported in peer-reviewed literature and at conferences. In rare instances, data is sent to other analysts, including associates in the pharmaceutical industry or device manufacturers. Only fully de-identified data is released in these instances. The CORI Research Operations Committee carefully monitors the way in which data is used by associates.
Would you ever release or sell your entire database?
CORI only releases data for specific studies that the CORI Research Operations Committee deems to be scientifically sound and clinically relevant. Only the data that is required for a study is released for analysis.
Do you ever release data from just one practice, or identify practices in an aggregate dataset?
CORI only releases data from one practice to investigators at that practice at their request. When CORI investigators report findings, the characteristics of the sites may be described, but individual sites are never mentioned without their express consent.