Frequently Asked Questions (FAQ)

The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) is a consortium committed to working together around the development, testing, and implementation of strategies to improve care for diverse residents in the metropolitan Chicago region in order to improve health care quality, health outcomes, and health equity. CAPriCORN builds upon the strengths of consortium members, the wisdom of those who provide and those who seek health care at these institutions, and individuals who seek to develop a network and infrastructure for sustainable and patient-centered comparative effectiveness research in the Chicago area.
CAPriCORN is the Chicago Area Patient Centered Outcomes Research Network. It is led by a Steering Committee consisting of the representatives of the Chicago Community Trust, each participating health system, and patient and other stakeholders. The Chicago Community Trust is the primary granting organization (Terry Mazany, CEO is the Principal Investigator) and also provides administrative support. The Medical Research Analytics and Informatics Alliance (MRAIA) is providing support as the primary data aggregator. The consortium involves patients and families in the metropolitan Chicago region, the community leaders that support them, and their clinicians along with researchers. Participating health systems include Stroger Hospital of Cook County, NorthShore University HealthSystem, Northwestern University, Rush University, University of Chicago, Loyola University, University of Illinois at Chicago, AllianceChicago, and the Hines and Jessie Brown VA hospitals.

Other partnering groups include: Blue Cross Blue Shield of Illinois, Center for Medical Technology Policy, Chicago Asthma Consortium, Chicago Health IT Regional Extension Center (CHITREC), Clinical Directors’ Network, Comer Children’s Hospital, Have a Heart for Sickle Cell Anemia Foundation, Illinois Hospital Association, Lurie Children’s Hospital, Medical Research Analytics and Informatics Alliance, Next Step/Strive, State of Illinois Office of Health Information Technology, Rand Corporation, Respiratory Health Association, Sickle Cell Disease Association of Illinois, The Peggy Lillis Memorial Foundation, Tufts University, and Vanderbilt University

While planning for CAPriCORN started in Summer 2013, CAPriCORN’s official work started March 1, 2014.
CAPriCORN was funded by a Clinical Data Research Network (CDRN) grant through the Patient Centered Outcomes Research Institute (PCORI), an independent, non-profit organization authorized by Congress and funded through the Affordable Care Act.  Additional information about PCORI can be found at http://www.pcori.org/
The initial grant was for $7 million in order to meet milestones in making CAPriCORN a successful Clinical Data Research Network.
CAPriCORN is funded through August 2018. The work is supported by the leaders of the participating health systems and long-term sustainability plans are being developed.
CAPriCORN was created to be one of the original 11 Clinical Data Research Networks (CDRNs) that comprises one part of PCORnet, the National Patient-Centered Clinical Research Network.  The other part of PCORnet are 19 Patient-Powered Research Networks.  PCORnet and PCORI will unite these two different types of networks and draw upon their complementary strengths, thereby providing access to a wider and richer range of health information to power more efficient clinical research. Importantly, PCORnet will facilitate the use of both patient-generated and clinically-derived data to support research on the most pressing needs and concerns of patients and their caregivers.

 

Clinical Data Research Networks, or CDRNs, are typically based in healthcare systems and provide data drawn from everyday clinical encounters in healthcare settings, such as hospitals and outpatient clinics. Together they represent a range of healthcare delivery settings and practice arrangements representing real-world U.S. health care delivery and a wide range of medical conditions.

Patient-Powered Research Networks, or PPRNs, are run by patients and advocacy organizations and clinical research partners who are interested in sharing health information and participating in comparative effectiveness research (CER). They collect health data and provide a common venue for patients and researchers who are focused on moving the research agenda forward for specific medical conditions. In addition, each of these PPRNs is committed to preparing their networks to conduct comparative effectiveness research (CER).

 

PCORnet will transform clinical research by engaging patients, care providers, and health systems in collaborative partnerships to improve healthcare and advance medical knowledge. By bringing research and patient care together, this innovative health data network will be able to explore the questions that matter most to patients and their families.

Vast amounts of valuable health information are created every day during routine patient visits. Opportunities to use this information for research often are missed because the networks that hold this information cannot easily communicate or collaborate with each other. By building clinical research into the healthcare process and by working directly with patients and their advocates, CAPriCORN will be able to work with other similar groups around the country to provide the answers that patients need quickly, efficiently, and at a lower cost than previously possible.

CAPriCORN, by itself and through PCORnet, represent a unique opportunity to make a real difference in the lives of patients and their families. Until now, we have been unable to answer many of the most important questions affecting health and healthcare. But by combining the knowledge and insights of patients, caregivers, and researchers in a revolutionary network with carefully controlled access to rich sources of health data, we will be able to respond to patient’s priorities and speed the creation of new knowledge to guide treatment on a national scale.

CAPriCORN will work to make this health information already being collected everyday as patients seek services in heath systems “research ready.” “Research ready” means that the data collected is of a quality and format that can be used by health researchers.  A unique feature of CAPriCORN is that it seeks active input from patients, front-line clinicians, and voluntary health organization leaders at each stage of the patient-centered outcomes research process.

CAPriCORN includes patient, clinician, and community engagement in network governance and all aspects of research design, implementation, interpretation and dissemination of results.

CAPriCORN is designed to be able to study common health conditions along with rare health conditions.  Examples of common conditions that CAPriCORN initially will focus efforts include obesity, asthma, and anemia.  Examples of rare conditionals that CAPriCORN initially will study include sickle cell disease and recurrent Clostridium Difficle infection.

In the future, more health conditions will be selected based on the priorities of stakeholders involved in CAPriCORN, the needs of persons seeking services in the metropolitan Chicago region, and the local expertise of clinicians and researchers in the health systems represented by CAPriCORN.

CAPriCORN is designed to study a population of at least 1,000,000 unique persons seeking health care services from health systems in the metropolitan Chicago region.
Tremendous amounts of health information are generated every day across the nation. These rich data sources already are developed and are being used to conduct research on health outcomes under careful regulatory and privacy oversight at each health system that is part of CAPriCORN. The data sources to support research, include:

  • electronic health records (EHRs) — The expansion of EHRs to document the health care of persons seeking services at CAPriCORN health systems streamlines the ability to use health information to answer the health questions that matter to all stakeholders.
  • patient- generated information — With appropriate consent, patients themselves will provide their perspective on health through surveys administered through multiple methods including but not limited to paper documents, telephone calls, or electronic systems such as computers or cell phones.
  • Other sources such as insurance claim forms

Regardless of the source, health data in CAPriCORN will be stored securely and handled in ways that protect patients’ privacy.

Attention to data security and data privacy is critical to establishing and sustaining patient and community trust and encouraging participation in research.

CAPriCORN continues to develop security policies and measures that are right for its members.  Close monitoring of research will be conducted by a special institutional review board created for CAPriCORN.  Data privacy policies will be developed by the CAPriCORN Steering Committee and monitored by the privacy officer or board of each health system partner.  A critical feature of this effort is that patients will be deeply involved in refining these policies.

Phase I of CAPriCORN was committed to building a cross-cutting infrastructure for sustainable, population-wide, and patient-centered research in Chicago. During this time, CAPriCORN was able to establish a model of how healthcare institutions in complex urban settings can overcome barriers of competition, care fragmentation, and limited resources to improve care for diverse populations and reduce health inequities.
Phase II of CAPriCORN is dedicated to the sustainability of the consortium with the goal of becoming its own network. Phase II will accelerate the implementation of innovative methods to transition healthcare systems into learning health systems that impact healthcare quality, health outcomes, and health equity.