CHICAGO – Governor Quinn today announced that a coalition of 20 health and hospital organizations from Illinois has been awarded an 18-month, $7-million federal award to establish a clinical data research network (CDRN). Awarded by the Patient-Centered Outcomes Research Institute (PCORI), the award will allow the coalition to be part of a larger national network that will model how healthcare institutions in complex urban settings improve health outcomes and drive down costs for both rare and common conditions such as sickle cell disease, asthma, anemia, recurrent clostridium difficile, obesity and diabetes.
“Through this unique collaboration of our incredibly talented researchers, Illinois is helping lead the fight against chronic illnesses that affect millions of Americans,” Governor Quinn said. “This coalition will be able to touch millions of lives and make a positive impact on disease prevention and improving health outcomes.”
The coalition, the Chicago Area Patient Centered Outcomes Research Network (CAPriCORN), will pool data from more than 1 million patients so researchers locally and nationwide can learn how providers can overcome barriers of competition, care fragmentation and limited resources. This will aid in the development, testing and implementation of effective strategies to improve care for diverse populations and reduce health disparities. The Chicago Community Trust and the Illinois Medical District Commission will facilitate and administer this unprecedented collaboration.
Better decision-making, greater engagement
PCORI, established in 2010, is authorized by Congress to conduct research to provide information about the best available evidence to help patients and their healthcare providers make more informed decisions.
The mission of CAPriCORN is to provide a data and informatics infrastructure to support collaboration among Chicago-area scientists in conducting patient-centered outcomes research, with an ultimate goal of improving patient outcomes.
The award will be used for numerous activities across the CAPriCORN initiative, including: compiling clinical data; designing systems to conduct Comparative Effectiveness Research trials and observational studies in the Chicago area and nationally; establishing procedures for clinical data standardization and sharing across participating healthcare delivery institutions that can be used for performance measurement and quality improvement; engaging patients, clinicians and health system leadership in governance and use of CAPriCORN data resources; and recruiting and surveying clinical research study participants.
Collaborating for an important cause
Participating healthcare delivery institutions include:
- Alliance of Chicago’s Federally Qualified Health Centers
- Cook County Health and Hospital Systems
- Loyola University Health System
- NorthShore University HealthSystem
- Northwestern Medicine
- Rush University Medical Center
- University of Illinois Hospital & Health Sciences System
- University of Chicago Medicine
- Veterans Administration Hospitals (Hines, Jesse Brown)
Other CAPriCORN partners include:
- The Chicago Community Trust
- Illinois Medical District Commission
- University HealthSystem Consortium (UHC)
- University of Illinois at Chicago
- Chicago Health IT Regional Extension Center (CHITREC)
- Medical Research Analytics and Informatics Alliance
- Center for Medical Technology Policy
- Clinical Directors Network
- Tufts University CTSI
- Vanderbilt University
CAPriCORN is supported by the Illinois Department of Healthcare and Family Services, the Illinois Office of Health Information Technology, the Cook County Government and the Chicago Department of Public Health.
Advocacy groups supporting CAPriCORN include: Respiratory Health Association, Chicago Asthma Consortium, Sickle Cell Disease Association of Illinois, Peggy Lillis Mills Foundation, Have a Heart for Sickle Cell Anemia Foundation and Next Step/STRIVE. Blue Cross and Blue Shield of Illinois is also a supporter of CAPriCORN.
In preparation for this award, CAPriCORN sites collaborated with a planning grant from the National Institutes of Health Clinical and Translational Science Awards. They also pooled clinical data from electronic health records as part of a project funded by the Ortho Sprague Institute to identify patients and potential study participants for the anticipated research. In addition, five of the CAPriCORN institutions already collaborate with the Chicago-based UHC, an alliance of 119 nonprofit academic medical centers, more than 300 affiliated hospitals and nearly 100 faculty practice plans. UHC will expand its role to serve as a data aggregator for all CAPriCORN sites.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at http://pcori.org. PCORI has awarded a total of $464.4 million since it began funding CER in 2012. For more information about PCORI funding, visit http://pcori.org/funding-opportunities.