Evidence map›Paper›PMID 39441983›Full record

ArticleJournal of the American Medical Informatics Association : JAMIA2024

Equitable community-based participatory research engagement with communities of color drives All of Us Wisconsin genomic research priorities.

Suma K Thareja, Xin Yang, Paramita Basak Upama, Aziz Abdullah, Shary Pérez Torres, Linda Jackson Cocroft, Michael Bubolz, Kari McGaughey, Xuelin Lou, Sailaja Kamaraju and 5 more

Abstract read
In one paragraph

Article in Journal of the American Medical Informatics Association : JAMIA, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Suma K TharejaMedical College of Wisconsin, Milwaukee, WI 53226, United States.ORCID 0000-0002-3811-4666
Xin YangAll of Us Wisconsin, Milwaukee, WI 53226, United States.
Paramita Basak UpamaMarquette University, Milwaukee, WI 53233, United States.
Aziz AbdullahInpower, Milwaukee, WI 53212, United States.
Shary Pérez TorresUnited Community Center, Milwaukee, WI 53204, United States.
Linda Jackson CocroftBlack Women 50+ Health & Lifestyles Magazine, Milwaukee, WI 53007, United States.
Michael BubolzEisen Dev, Milwaukee, WI 53207, United States.
Kari McGaugheyAll of Us Wisconsin, Milwaukee, WI 53226, United States.
Xuelin LouMedical College of Wisconsin, Milwaukee, WI 53226, United States.
Sailaja KamarajuMedical College of Wisconsin, Milwaukee, WI 53226, United States.ORCID 0000-0003-3031-9269
Sheikh Iqbal AhamedMarquette University, Milwaukee, WI 53233, United States.
Praveen MadirajuMarquette University, Milwaukee, WI 53233, United States.
Anne E KwitekMedical College of Wisconsin, Milwaukee, WI 53226, United States.
Jeffrey WhittleMedical College of Wisconsin, Milwaukee, WI 53226, United States.
Zeno FrancoMedical College of Wisconsin, Milwaukee, WI 53226, United States.

Funding

All of Us Wisconsin OT2OD026555 · OD · MARSHFIELD CLINIC RESEARCH FOUNDATION · PI BURNSIDE, ELIZABETH S, EDWARDS, DOROTHY FARRAR · 2018 to 2023
$57.2M
AOU WI Area of Interest 1: Community, Participant and Provider Engagement, Enrollment...OT2OD037636 · OD · MARSHFIELD CLINIC RESEARCH FOUNDATION · PI Zeno E Franco, Scott Joseph Hebbring · 2024 to 2026
$10.6M
Medical Scientist Training ProgramT32GM080202 · NIGMS · MEDICAL COLLEGE OF WISCONSIN · PI BARBIERI, JOSEPH T, SALZMAN, NITA H · 2010 to 2024
$5.7M
Understanding the degeneration of axon and nerve terminals in Alzheimer's disease and related dementia brainR01AG079257 · NIA · MEDICAL COLLEGE OF WISCONSIN · PI XUELIN LOU · 2023 to 2026
$1.6M
ArpC3-mediated actin remodeling in insulin granule exocytosis and diabetesR01DK132088 · NIDDK · MEDICAL COLLEGE OF WISCONSIN · PI XUELIN LOU · 2023 to 2026
$1.5M
Dynamin function in pancreatic beta-cell autophagyR01DK133326 · NIDDK · MEDICAL COLLEGE OF WISCONSIN · PI LOU, XUELIN · 2022 to 2024
$1.2M
NIA NIH HHS R01 AG079257NIDDK NIH HHS R01 DK132088NIDDK NIH HHS R01 DK133326NIGMS NIH HHS T32 GM080202NIH HHS 3OT2OD026555-01S4NIH HHS OT2 OD026555NIH HHS OT2 OD037636Robert D. and Patricia E. Kern Institute for the Transformation of Medical EducationUs Wisconsin NIH 3OT2OD026555-01S4
6 · The paper itself

Abstract

objectiveThe NIH All of Us Research Program aims to advance personalized medicine by not only linking patient records, surveys, and genomic data but also engaging with participants, particularly from groups traditionally underrepresented in biomedical research (UBR). This study details how the dialogue between scientists and community members, including many from communities of color, shaped local research priorities. MATERIALS AND

methodsWe recruited area quantitative, basic, and clinical scientists as well as community members from our Community and Participant Advisory Boards with a predetermined interest in All of Us research as members of a Special Interest Group (SIG). An expert community engagement scientist facilitated 6 SIG meetings over the year, explicitly fostering openness and flexibility during conversations. We qualitatively analyzed discussions using a social movement framework tailored for community-based participatory research (CBPR) mobilization.

resultsThe SIG evolved through CBPR stages of emergence, coalescence, momentum, and maintenance/integration. Researchers prioritized community needs above personal academic interests while community members kept discussions focused on tangible return of value to communities. One key outcome includes SIG-driven shifts in programmatic and research priorities of the All of Us Research Program in Southeastern Wisconsin. One major challenge was building equitable conversations that balanced scientific rigor and community understanding. DISCUSSION: Our approach allowed for a rich dialogue to emerge. Points of connection and disconnection between community members and scientists offered important guidance for emerging areas of genomic inquiry.

conclusionOur study presents a robust foundation for future efforts to engage diverse communities in CBPR, particularly on healthcare concerns affecting UBR communities.

Indexed as

Community-Based Participatory ResearchGenomicsHumansWisconsincommunity-based participatory researchethnic and racial minoritiesgenomic researchNIH All of Us Research Program

Identifiers

PMID39441983
PMCPMC11631115

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.