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

Author

Listed:
  • 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
    University of Illinois Cancer Center, 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
    School of Public Health, University of Illinois Chicago, 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
    University of Illinois Cancer Center, 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
    School of Public Health, University of Illinois Chicago, Chicago, IL 60612, USA)

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.

Suggested Citation

  • 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, 2024. "Are We the Problem? A Call to Action for Addressing Institutional Challenges to Engaging Community Partners in Research," IJERPH, MDPI, vol. 21(2), pages 1-6, February.
    • Handle: RePEc:gam:jijerp:v:21:y:2024:i:2:p:236-:d:1340144
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    References listed on IDEAS

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    1. Wallerstein, N. & Duran, B., 2010. "Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity," American Journal of Public Health, American Public Health Association, vol. 100(S1), pages 40-46.
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