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282 A “Blueprint” for Developing a Research-Community Partnership to Utilize Real World Data

Published online by Cambridge University Press:  03 April 2024

Grace Cua
Affiliation:
University of Illinois at Chicago
Jim Poole
Affiliation:
NAMI Chicago
Kathleen Diviak
Affiliation:
University of Illinois at Chicago
Frederica Malone
Affiliation:
NAMI Chicago
John O’Keefe
Affiliation:
University of Illinois at Chicago
Tara Mehta
Affiliation:
University of Illinois at Chicago
Marc Atkins
Affiliation:
University of Illinois at Chicago
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Abstract

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OBJECTIVES/GOALS: Real-world data (RWD) may offer insights into mental health treatment as usual and illuminate targets for implementation and translation. This requires strong research-community partnerships (RCP). In this presentation, we will highlight key components of an ongoing RCP in leveraging RWD to advance translational science. METHODS/STUDY POPULATION: The RCP was formed to develop an infrastructure for NAMI Chicago, a community-based organization that oversees a city-wide social services helpline, to support collection of RWD data to understand whether NAMI helpline support services and referrals meet callers’ emotional and physical needs. This RCP includes three entities: NAMI Chicago, UIC’s Center for Clinical and Translational Science’s Community Engagement and Collaboration (CEC) Core, and UIC’s Institute for Health and Research Policy’s Data Management Core (DMC). From a preliminary review of case notes, this case study details concrete examples that fit into Brookman-Frazee etal. (2012)’s RCP framework to illustrate the trajectory of this partnership through its formation, execution of activities, and sustaining NAMI Chicago’s data capacity. RESULTS/ANTICIPATED RESULTS: In the formation of this RCP, we identified our joint goal of creating a database infrastructure to link NAMI Chicago’s existing helpline data with a database co-created in REDCap through APIs. Based on the identified joint goal, we defined our roles/responsibilities that best aligned with our own individual expertise to execute the necessary operational processes. The RCP is currently executing the activities to create this data infrastructure. Barriers included delays in securing a computing environment and enablers included an established long-standing relationship between NAMI Chicago and CEC. Distal outcomes of this RCP include increasing NAMI Chicago’s capacity to systematically use RWD to better inform their practices and identify barriers in accessing social service resources in Chicago. DISCUSSION/SIGNIFICANCE: The identification of enablers, barriers, and the necessary operational processes and activities will outline a “blueprint” for other institutions and community organizations to successfully utilize RWD to understand mental health practices and advance translational research.

Type
Health Equity and Community Engagement
Creative Commons
Creative Common License - CCCreative Common License - BYCreative Common License - NCCreative Common License - ND
This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.
Copyright
© The Author(s), 2024. The Association for Clinical and Translational Science