Participant Engagement Unit

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PROJECT SUMMARY – PARTICIPANT ENGAGEMENT UNIT (PEU) The PEU will be responsible for direct participant engagement to enroll patients into the Washington University (WU) PE-CGS program. Under the direction of PIs Fields and Drake, we will leverage investigator and institutional expertise to directly address the Cancer Moonshot Blue Ribbon Panel recommendation to “establish a network for direct patient engagement”. We will prioritize 8 areas that are directly tied to the PEU Specific Aims: (1) identify; (2) contact; and (3) consent participants; (4) obtain tumor/normal samples and clinical/meta data; (5) create and prospectively maintain patient, specimen, and ongoing treatment data; (6) report research findings directly to study participants using cutting-edge, innovative, informatics-driven methodologies that leverage unique partnerships; (7) guide patients through the “flow” of the WU-PE-CGS program, providing oversight of program-wide integration; and (8) bi-directionally interact with the other WU-PE-CGS “Units” for ongoing, iterative refinement of program-wide protocols based on prospective study of participants. To achieve success in these seven areas that is in-line with the Cancer Moonshot mission, we need novel paradigms for engagement. The WU-PE-CGS has developed several innovative approaches following our overall mission to “develop, implement, evaluate, and modify”. First, we have partnered with three world-class patient advocacy groups (PAGs) that have significant experience in working directly with patient-partners (PPs) in advancing cancer care: The Cholangiocarcinoma Foundation (CCF), Fight Colorectal Cancer (FCRC), and The Multiple Myeloma Research Foundation (MMRF). Second, we will leverage our institutional strengths to directly address this RFA's stated knowledge gaps of genomically characterizing and engaging patients with understudied tumor types (cholangiocarcinoma [CHOL]) and cancers that are understudied in minority populations (colorectal cancer in African Americans under the age of 50 [CRC-AA<50] and multiple myeloma in African Americans [MM-AA]). Third, we will employ bi-directional, real-time, informatics-driven methods to interact with the EOU to evaluate and iteratively refine our program to ensure that the WU-PE-CGS optimally identifies, enrolls, evaluates, and interacts with the participants. The innovative and impactful aims of the PEU directly address the Cancer Moonshot goals of “enlisting direct patient engagement…to facilitate participation in research and ensure patients are respected and have access to the research enterprise” with a high priority “to reach minority and underserved populations”. Our partnerships with PAGs and PPs, leveraging of investigator and institutional expertise, adherence to PCORI rubrics, and ongoing methodological refinement will result in impactful research across a broad group of cancer types.