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441 Southeastern Wisconsin Community-Based Participatory Research using the All of Us Researcher Workbench

Published online by Cambridge University Press:  24 April 2023

Suma Thareja
Affiliation:
Medical College of Wisconsin
Xin Yang
Affiliation:
Medical College of Wisconsin
Md Raihan Mia
Affiliation:
Marquette University
Paramita Basak Upama
Affiliation:
Marquette University
Shary Pérez Torres
Affiliation:
United Community Center
Linda Jackson Coroft
Affiliation:
Black Women 50+ Health & Lifestyles Magazine
Kari McGaughey
Affiliation:
All of Us Wisconsin
Zeno Franco
Affiliation:
Medical College of Wisconsin
Jeff Whittle
Affiliation:
Clement J Zablocki Veterans Affairs Medical Center
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Abstract

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OBJECTIVES/GOALS: Using a community-based participatory research (CBPR) approach, the All of Us (AoU) Wisconsin Froedtert & the Medical College of Wisconsin (MCW) site aimed to improve public understanding of science by creating a Special Interest Group (SIG) of community members and scientists and driving healthcare research relevant to Southeastern Wisconsin. METHODS/STUDY POPULATION: We recruited community members from the AoU advisory boards and scientists from Froedtert & MCW. These SIG participants will converge on a hypothesis that aligns with community priorities and conduct research using the national AoU database, which combines EHR, survey, and whole genome sequencing data. A year of monthly SIG meetings from 2022-2023 will serve as focus group sessions that will be recorded and transcribed. In addition to descriptive statistics on participant demographics and affiliations, we plan to qualitatively characterize transcripts, field notes, and feedback, such as participation satisfaction or reflection on self- and group-driven impact. We will publish alongside all SIG members on both the research outcomes and the SIG-driven process to inform future similar endeavors. RESULTS/ANTICIPATED RESULTS: To date, we held three SIG meetings, which together formed the discover and define stages in the human-centered design framework. We narrowed down SIG membership to 15 consistent participants. Our coalition building conversations emphasized group priorities and future payoffs for independent research and community partnerships. Realizing a crucial need for bioinformaticians to prosecute SIG-driven research questions, we created a data subgroup of trainees and scientists to familiarize themselves with the AoU Researcher Workbench. Through shared decision making during this community engaged process, we are converging on a research direction centering on specific diseases or adverse outcomes with relevance to Southeastern Wisconsin communities and with implications for personalized medicine. DISCUSSION/SIGNIFICANCE: SIG scientists will learn about CBPR and access the AoU database. SIG community members will better understand the research process and share their lessons with local communities. The AoU Wisconsin research team will disseminate findings on the collective research process and empower scientist use of this nationally curated AoU database.

Type
Team Science
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), 2023. The Association for Clinical and Translational Science