CAPriCORN Frequently Asked Questions

Q: When was CAPriCORN started?

A: While planning for CAPriCORN started in summer 2013, CAPriCORN’s official work started in March 2014.

Q: Why was CAPriCORN created?

A: CAPriCORN was created to be one of the original 11 Clinical Data Research Networks that comprise one part of PCORnet, the national Patient-Centered Clinical Research Network. 

PCORnet will transform clinical research by engaging patients, care providers, and health systems in collaborative partnerships to improve health care 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 health care 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.

Q: What is special about CAPriCORN?

A: CAPriCORN, by itself and through PCORnet, represents 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 health care. But by combining the knowledge and insights of patients, caregivers and researchers in the network with carefully controlled access to rich sources of health data, we will be able to respond to patients’ 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 every day as patients seek services in health 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.

Q: Who is part of CAPriCORN?

A: CAPriCORN is led by a steering committee consisting of the representatives of each participating health system, and patient and other stakeholders. As of 2018, Northwestern is the primary granting organization. Prior to that, the Chicago Community Trust was the primary granting organization. The consortium involves patients and families in the metropolitan Chicago region, the community leaders who 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, The Alliance of Chicago Community Health Services, and the Hines and Jessie Brown VA hospitals.

Q: How is CAPriCORN funded?

A: CAPriCORN was funded by a Clinical Data Research Network grant through the Patient-Centered Outcomes Research Institute, an independent, non-profit organization authorized by Congress and funded through the Affordable Care Act.

Q: How much funding was provided to establish CAPriCORN?

A: The initial grant was for $7 million in order to meet milestones in making CAPriCORN a successful Clinical Data Research Network.

Q: How long is CAPriCORN funded?

A: CAPriCORN was initially funded to build the infrastructure to conduct patient-centered outcomes research for 18 months, second round of funding was provided for an aditional 3 years. The work is supported by the leaders of the participating health systems, and long-term sustainability plans are being developed.

Q: What are some of the health conditions that CAPriCORN will initially study?

A: CAPriCORN is designed to study common health conditions along with rare health conditions. Examples of common conditions that CAPriCORN will initially focus efforts on include obesity, asthma and anemia. Examples of rare conditionals that CAPriCORN will initially 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.

Q: How many people are covered by CAPriCORN efforts?

A: CAPriCORN is designed to study a population of at least one million persons seeking health care services from health systems in the metropolitan Chicago region.

Q: Where is the data from persons used in CAPriCORN going to come from?

A: Tremendous amounts of health information are generated every day across the nation. These rich data sources are already 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 following data sources support research:

  • 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: These include insurance claim forms, among other sources.

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

Q: How will CAPriCORN ensure the security and privacy of patient data?

A: 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.

The patient-centered outcomes research team at Rush represents faculty from all colleges with a range of expertise and is growing in its system-wide reach.