CAPriCORN's Response to COVID-19

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.

We connect expertise with the electronic health record data 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

Accelerating Patient-Centered Research that Answers Important Health Questions

Network Sites

Contributing strategic leadership, data, and/or data stewardship

Institution Lead
AllianceChicago Fred Rachman
Cook County Health William Trick
Edward Hines Jr. VA Hospital and Jesse Brown VA Medical Center Elizabeth Tarlov
Loyola Medicine Frances Weaver
Ann & Robert H. Lurie Children’s Hospital of Chicago Marc Rosenman
NorthShore University Health System 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 Nataliya Shurupova

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

Central Team

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

CAP partners

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:

  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 and a neutral non-profit that compiles and organizes the data 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.

CAPriCORN offers a unique opportunity to explore unanswered public health questions.  Results gleaned from the dataset can have a tremendous impact and will be an important contribution to the literature.

‐ Lisa Masinter, MD, MPH, MS, Director of Research, AllianceChicago

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

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