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
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 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.
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.
- 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.
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 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.