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.
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.
‐ Margie Schaps, MPH, Executive Director, Health & Medicine Policy Research Group‘Elevating the Patient Voice in Research’ provides us the opportunity to continue promoting health equity by working with patients to identify research priorities that may influence the future of health care and health outcomes.
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