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

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...

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Autores principales: Thareja, Suma, Yang, Xin, Mia, Md Raihan, Upama, Paramita Basak, Torres, Shary Pérez, Coroft, Linda Jackson, McGaughey, Kari, Franco, Zeno, Whittle, Jeff
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Cambridge University Press 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10129522/
http://dx.doi.org/10.1017/cts.2023.469
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author Thareja, Suma
Yang, Xin
Mia, Md Raihan
Upama, Paramita Basak
Torres, Shary Pérez
Coroft, Linda Jackson
McGaughey, Kari
Franco, Zeno
Whittle, Jeff
author_facet Thareja, Suma
Yang, Xin
Mia, Md Raihan
Upama, Paramita Basak
Torres, Shary Pérez
Coroft, Linda Jackson
McGaughey, Kari
Franco, Zeno
Whittle, Jeff
author_sort Thareja, Suma
collection PubMed
description 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.
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spelling pubmed-101295222023-04-26 441 Southeastern Wisconsin Community-Based Participatory Research using the All of Us Researcher Workbench Thareja, Suma Yang, Xin Mia, Md Raihan Upama, Paramita Basak Torres, Shary Pérez Coroft, Linda Jackson McGaughey, Kari Franco, Zeno Whittle, Jeff J Clin Transl Sci Team Science 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. Cambridge University Press 2023-04-24 /pmc/articles/PMC10129522/ http://dx.doi.org/10.1017/cts.2023.469 Text en © The Association for Clinical and Translational Science 2023 https://creativecommons.org/licenses/by-nc-nd/4.0/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.
spellingShingle Team Science
Thareja, Suma
Yang, Xin
Mia, Md Raihan
Upama, Paramita Basak
Torres, Shary Pérez
Coroft, Linda Jackson
McGaughey, Kari
Franco, Zeno
Whittle, Jeff
441 Southeastern Wisconsin Community-Based Participatory Research using the All of Us Researcher Workbench
title 441 Southeastern Wisconsin Community-Based Participatory Research using the All of Us Researcher Workbench
title_full 441 Southeastern Wisconsin Community-Based Participatory Research using the All of Us Researcher Workbench
title_fullStr 441 Southeastern Wisconsin Community-Based Participatory Research using the All of Us Researcher Workbench
title_full_unstemmed 441 Southeastern Wisconsin Community-Based Participatory Research using the All of Us Researcher Workbench
title_short 441 Southeastern Wisconsin Community-Based Participatory Research using the All of Us Researcher Workbench
title_sort 441 southeastern wisconsin community-based participatory research using the all of us researcher workbench
topic Team Science
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10129522/
http://dx.doi.org/10.1017/cts.2023.469
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