CAPriCORN's Response to COVID-19

Patient Community Advisory Committee

Central Hub of Patient and Clinician Engagement

CAPriCORN is committed to incorporating 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 is comprised of patients, community members, caregivers, advocates, and healthcare providers. They meet regularly to provide feedback and recommendations related to CAPriCORN activities and research. Discussion of projects at an early, formative stage leads to research designs that better reflect the needs of patients and providers.

PCAC members are liaisons to the broader communities they represent, facilitating the transfer of information between CAPriCORN and the larger community.

In 2019, PCAC and the Health & Medicine Policy Research Group was awarded a Eugene Washington PCORI Engagement Award for Conference Support. The grant involves planning and implementing the “Elevating the Patient Voice in Research” project, which is designed to increase patient participation in research and to guide future health research priorities.

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)

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