Patient Engagement

Engaging Patients, Improving Outcomes

Either now or in the future, we all experience what it’s like to be a patient or to support someone who is. That’s why patients and communities are at the center of everything CAPriCORN does. Starting with governance and network oversight, patients are involved in shaping priorities and making sure goals align with the needs of our communities.

Additionally, CAPriCORN has a dedicated Patient and Community Advisory Committee (PCAC) that meets regularly to weigh in on key issues and to direct its own projects that promote the inclusion of patient voices in research. In 2019, the PCAC received a PCORI engagement award to further their work in this area. Community members serve on CHAIRb, CAPriCORN’s central IRB, to ensure all proposed studies take into account patient feedback in their designs.

CAPriCORN is supported by PCORnet, which exists to advance patient-centered research. We are proud to partner with the other PCORnet clinical research networks (CRNs) that expand our patient population and research capabilities nationwide.

CAP patientengagement

Incorporating Patient Advocate Expertise

We are in the unique position of being able to make available de-identified, quality EHR data that includes patient-level information on Chicago-area demographics and disease conditions. Incorporating patient advocate expertise, we are excited to help researchers and community members access the data they need to ultimately drive advancements in public health and improvements in patient outcomes.

The Homelessness Project at the scale realized would not have been possible without the CAPriCORN infrastructure. The infrastructure provided working relationships between major healthcare institutions in the city of Chicago, a standardized data model for efficient extraction and linkage, a process for performing de-identified data linkage, and an honest broker to link data without the possibility of re-identification.

‐ William Trick, MD, Cook County Health (CCH)

CAPriCORN is working to improve the health of patients and communities.

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