Are We the Problem? A Call to Action for Addressing Institutional Challenges to Engaging Community Partners in Research

Neha Hippalgaonkar (), Ryan Huu-Tuan Nguyen, Eliza Brumer Cohn, Joseph Horowitz, Ana Williams Waite, Tigist Mersha, Christen Sandoval, Sarah Khan, Kauthar Salum, Paris Thomas, Anne Marie Murphy, Beulah Brent, Lolita Coleman, Paramjeet Khosla, Kent F. Hoskins, Vida Henderson and Leslie R. Carnahan
Additional contact information
Neha Hippalgaonkar: Division of Hematology/Oncology, University of Illinois Chicago, Chicago, IL 60612, USA
Ryan Huu-Tuan Nguyen: Division of Hematology/Oncology, University of Illinois Chicago, Chicago, IL 60612, USA
Eliza Brumer Cohn: Fred Hutchinson Cancer Center, Seattle, WA 98126, USA
Joseph Horowitz: Department of Medicine and Pediatrics, University of Illinois College of Medicine, Chicago, IL 60612, USA
Ana Williams Waite: University of Illinois Cancer Center, Chicago, IL 60612, USA
Tigist Mersha: University of Illinois Cancer Center, Chicago, IL 60612, USA
Christen Sandoval: School of Public Health, University of Illinois Chicago, Chicago, IL 60612, USA
Sarah Khan: Sinai Chicago, Chicago, IL 60612, USA
Kauthar Salum: Fred Hutchinson Cancer Center, Seattle, WA 98126, USA
Paris Thomas: Equal Hope, Chicago, IL 60612, USA
Anne Marie Murphy: School of Public Health, University of Illinois Chicago, Chicago, IL 60612, USA
Beulah Brent: Sisters Working It Out, Chicago, IL 60612, USA
Lolita Coleman: Sisters Working It Out, Chicago, IL 60612, USA
Paramjeet Khosla: Sinai Chicago, Chicago, IL 60612, USA
Kent F. Hoskins: Division of Hematology/Oncology, University of Illinois Chicago, Chicago, IL 60612, USA
Vida Henderson: Fred Hutchinson Cancer Center, Seattle, WA 98126, USA
Leslie R. Carnahan: University of Illinois Cancer Center, Chicago, IL 60612, USA

IJERPH, 2024, vol. 21, issue 2, 1-6

Abstract: Community-engaged research (CEnR) is a potent tool for addressing health inequities and fostering equitable relationships among communities, researchers, and institutions. CEnR involves collaboration throughout the research process, demonstrating improvements in study recruitment and retention, intervention efficacy, program sustainability, capacity building among partners, and enhanced cultural relevance. Despite the increasing demand for CEnR, institutional policies, particularly human participation protection training (HPP), lag behind, creating institutional barriers to community partnerships. Here, we highlight challenges encountered in our ongoing study, Fostering Opportunities in Research through Messaging and Education (FOR ME), focused on promoting shared decision-making around clinical trial participation among Black women diagnosed with breast cancer. Grounded in CEnR methods, FOR ME has a partnership with a community-based organization (CBO) that addresses the needs of Black women with breast cancer. Our CBO partner attempted to obtain HPP training, which was administratively burdensome and time-consuming. As CEnR becomes more prevalent, academic and research institutions, along with researchers, are faced with a call to action to become more responsive to community partner needs. Accordingly, we present a guide to HPP training for community partners, addressing institutional barriers to community partner participation in research. This guide outlines multiple HPP training pathways for community partners, aiming to minimize institutional barriers and enhance their engagement in research with academic partners.

Keywords: health disparity; minority and vulnerable populations; cancer survivors; breast neoplasm; clinical trial; decision making; patient participation (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2024
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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