About CAPriCORN

Who We Are

CAPriCORN, a patient-centered outcomes and research network, is a partnership between healthcare and research institutions, patients, patient advocates, clinicians, community-based organizations (CBOs) and non-profits committed to enabling and delivering patient centered clinical research. View highlights of our work.

We focus on population health, health equity, and technological innovation, connecting data with the expertise needed to answer critical health questions. The network is a truly collaborative space – we work together to ensure the integrity of our projects and the quality of our data. A Patient Community Advisory Committee (PCAC) has worked with CAPriCORN since its inception to elevate the patient voice in research.

Mission
Our mission is to develop, test, and implement clinical research in order to improve health care quality, health outcomes, and health equity for the diverse populations of Chicagoland and the surrounding states

Goals

Engage stakeholders in governance and research
Expand an analysis-ready, standardized data set while protecting privacy and data security
Embed clinical trials in network care delivery systems
Build public trust in research
Attract diverse users of network resources
Create a sustainable network

Accelerating Patient-Centered Research that Answers Important Health Questions

Network Sites

Contributing strategic leadership, data, and/or data stewardship

Current Members:

Institution	Lead
AllianceChicago	Fred Rachman
Cook County Health	Keiki Hinami
Loyola Medicine	Frances Weaver
Ann & Robert H. Lurie Children’s Hospital of Chicago	Marc Rosenman
Endeavor Health	Stephen Wachtel
Northwestern Medicine*	Faraz Ahmad
Rush University Medical Center	Raj Shah
University of Chicago	David Meltzer
University of Illinois Hospital & Health Sciences System	Howard Gordon
Medical Research Analytics and Informatics Alliance	Ellen Holfels

*Lead site; Abel Kho is the principal investigator of the network

Past Members:

Institution	Lead
Edward Hines Jr. VA Hospital and Jesse Brown VA Medical Center	Howard Gordon/ Frances Weaver

Central Team

Managing operational needs and serving as primary contacts for the network. We look forward to working with you.
Get in touch at info@capricorncdrn.org

Noah Haines

Network Coordinator

Shelly Sital

Operations Liaison

Partners

Supporting the work of CAPriCORN

All Chicago Making Homelessness History
Alliance to End Homelessness in Suburban Cook County
The Chicago Community Trust
ASH Research Collaborative
Chicago Center for HIV Elimination
Clinical Directors Network (CDN)
Pastors 4 PCOR
PaTH Clinical Data Research Network
Prometheus Research
Mid-South Clinical Data Research Networks
DePaul University
New York City Clinical Data Research Network
OneFlorida Clinical Data Research Network
Greater Plains Collaborative Clinical Data Research Network
Chicago Health IT Regional Extension Center
Health & Medicine Policy Research Group
Health eHeart Patient Powered Network
HealthCore-Anthem Research Network
Illinois Department of Public Health
Chicago Department of Public Health
Cook County Department of Public Health
Humana-HUMnet
Illinois Public Health Institute
Illinois Health and Hospital Association
Research Action for Health Network (REACHnet)
Mytrus
The Patient-Centered Network of Learning Health Systems
Patient-Centered Scalable National Network for Effectiveness Research
The Thapelo Institute, Inc.
Third Coast Center for AIDS Research
Westside Institute for Science and Education

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:

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 Data Use Agreements (DUAs) and the CAPriCORN Steering Committee.
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.
We share the responsibility of keeping data safe. CAPriCORN member healthcare systems and a neutral non-profit that compiles and organizes the data both have strict protections in place.
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.
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.
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.
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 info@capricorncdrn.org.

The Homelessness Project at the scale realized would not have been possible without the CAPriCORN infrastructure. The infrastructure provided working relationships between major healthcare institutions in the city of Chicago, a standardized data model for efficient extraction and linkage, a process for performing de-identified data linkage, and an honest broker to link data without the possibility of re-identification.
‐ William Trick, MD, Cook County Health (CCH)

CAPriCORN is working to improve the health of patients and communities.

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