The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) CRN is a partnership of 10 clinical and academic health systems in the Metropolitan Chicago area, led by Northwestern University’s Center for Health Information Partnerships (CHIP). CAPriCORN is committed to improving healthcare delivery by conducting patient-centered outcomes research, efficiently disseminating research results, and increasing the adoption of evidence-based practices across a variety of patient populations and healthcare settings. The network develops the data and research infrastructure needed to meet these goals.
To maximize meaningful research opportunities, CAPriCORN actively engages with its stakeholders, including patients, clinicians, payers, community partners, and health system leaders. The network is committed to maintaining these key partnerships to improve the effectiveness of patient-centered research.
CAPriCORN incorporates the patient and clinician voice in all aspects of operations to ensure clinical research meets the needs of our communities. As part of this commitment, CAPriCORN established a Patient Community Advisory Committee (PCAC) to be the central hub of patient and clinician engagement. The PCAC comprises patients, community members, caregivers, advocates, and healthcare providers. Members of the PCAC facilitate the transfer of information between CAPriCORN and the larger communities they represent.
CAPriCORN is governed by a Steering Committee (SC) which oversees research requests and strategic planning for the network. Routine operations of the network are handled by the Coordinating Committee (CC), consisting of the CAPriCORN principal investigator (PI), site-level PIs and two patient stakeholders; the CC is tasked with addressing issues as they arise and reporting the network’s progress back to the SC. The two governing committees are informed by four subcommittees, each having at least one patient stakeholder on their roster:
- The Informatics Workgroup oversees the network’s data infrastructure and security.
- The Ethics and Regulatory Workgroup develops policies and oversees the network’s central IRB.
- The Clinical Research Workgroup engages clinicians and study teams in CAPriCORN research projects at participating institutions and engages them throughout the research process.
- The PCAC ensures stakeholder engagement throughout the network.
PCORnet is intended to serve as a national resource for conducting rapid, efficient, patient-centered observational and interventional randomized research that improves healthcare delivery and health outcomes. Over the course of this project period CAPriCORN will enhance and optimize its infrastructure to support a variety of patient-centered studies by:
- Ensuring meaningful engagement of patients, caregivers, clinicians, delivery systems, payers, and researchers in all phases of the research process
- Operating through a network model in which data remains at the source while allowing approved researchers within and outside the network to access it securely through a central point
- Facilitating the public sharing of resources and reusable tools to make research more efficient and reproducible
- Using the PCORnet CDM, which standardizes the data collected when patients receive care so that it is comparable across health systems and can be used for patient-centered outcomes research
- Using streamlined processes such as one central IRB for studies involving multiple systems and standardized data use agreements to enable research to be quicker and more efficient
|Title||Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN)|
|Network Design||Clinical Research Network|
|Lead Partner||Northwestern University–Center for Health Information Partnerships|
Ann & Robert H. Lurie Children’s Hospital of Chicago
Cook County Health
Northshore University Health System
Rush University Medical System
The University of Chicago Medicine
Medical Research Analytics and Informatics Alliance (MRAIA)
About PCORnet® Clinical Research Networks (CRNs)
|PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships. Clinical Research Networks (CRNs) are one type of network supported by PCORI. CRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions.|