About CAPriCORN

What We Do

CAPriCORN’s mission is to develop, test, and implement policies and programs designed to improve health care quality, health outcomes, and health equity for the diverse populations of Chicagoland and beyond.  We work closely with our Patient Community Advisory Committee (PCAC) to ensure priorities align with patient needs and goals.

Since 2014, CAPriCORN has worked to put in place the infrastructure and processes necessary to create data sets comprised of high-quality, de-duplicated patient information. CAPriCORN engages in sustainable, population-level patient-centered outcomes research.

Our Data Principles

Safeguarding data and maintaining privacy are important to the success of CAPriCORN’s work. Health data specialists, privacy and security experts, patients, and community members are involved in every step of our Front Door process that makes data available to researchers.

CAPriCORN commits to the following data principles:

1. CAPriCORN data will be used for research that aims to improve patient care and health. Researchers share their results with patients, community, academic institutions, and healthcare systems so many people can benefit from what they learned. Sharing research results or publications (articles, posters, etc.) must meet standards outlined by DUAs and the CAPriCORN Steering Committee.
2. We follow the guidance of our Chicago Area Institutional Review Board (CHAIRb), which makes sure research projects are ethical and safe. All requests for CAPriCORN data must be approved by our dedicated IRB, which was set up to protect patient rights. Three patients/community members serve on the IRB to add extra patient protections.
3. We share the responsibility of keeping data safe. CAPriCORN member healthcare systems, a neutral non-profit that compiles and organizes the data, and PCORnet (CAPriCORN’s national partner in research) all have strict protections in place.
4. CAPriCORN doesn’t store or own the data. Protected health information (identifiable patient health data) remains safe behind provider electronic health record (EHR) firewalls (barriers that stop the flow of data). Standards are in place to ensure data is de-identified (specific details are removed so data cannot be linked to a patient) before it is released to researchers. In the rare event that there is a problem with data security, we follow federal and state laws and regulations to fix the issue.
5. Researchers who use CAPriCORN data are bound by our contracts and data use agreements (DUAs). Researchers will lose access to the data and receive penalties if they do not follow these legal agreements. Researchers are not allowed to share data with anyone not covered by the agreements.
6. CAPriCORN researchers may contact patients only for approved research studies. Researchers must not include or contact patients who asked that their data not be used. Researchers cannot use de-identified data to identify patients.
7. CAPriCORN data is never sold. Researchers must go through a comprehensive process and gain approval in order to access data. Researchers are not allowed to use the data to make a profit.

If you have any questions or would like to discuss CAPriCORN’s data principles, please email us at capricornpmo@northwestern.edu or call (312) 503-7374.