IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v21y2024i2p236-d1340144.html
   My bibliography  Save this article

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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/21/2/236/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/21/2/236/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Lotte Prevo & Stef Kremers & Maria Jansen, 2020. "Small Successes Make Big Wins: A Retrospective Case Study towards Community Engagement of Low-SES Families," IJERPH, MDPI, vol. 17(2), pages 1-13, January.
    2. Held, Suzanne & Hallett, John & Schure, Mark & Knows His Gun McCormick, Alma & Allen, Sarah & Milne-Price, Shauna & Trottier, Coleen & Bull Shows, Brianna & Other Medicine, Lucille & Inouye, Jillian, 2019. "Improving chronic illness self-management with the Apsáalooke Nation: Development of the Báa nnilah program," Social Science & Medicine, Elsevier, vol. 242(C).
    3. Mayer, Yael & Ilan, Rotem & Slone, Michelle & Lurie, Ido, 2020. "Relations between traumatic life events and mental health of Eritrean asylum-seeking mothers and their children's mental health," Children and Youth Services Review, Elsevier, vol. 116(C).
    4. Katrina G. Claw & Casey R. Dorr & Erica L. Woodahl, 2024. "Implementing community-engaged pharmacogenomics in Indigenous communities," Nature Communications, Nature, vol. 15(1), pages 1-5, December.
    5. Dana H. Z. Williamson & Sheryl Good & Daphne Wilson & Na’Taki Osborne Jelks & Dayna A. Johnson & Kelli A. Komro & Michelle C. Kegler, 2023. "Using the Collaborative Problem-Solving Model: Findings from an Evaluation of U.S. EPA’s Environmental Justice Academy," Sustainability, MDPI, vol. 15(20), pages 1-24, October.
    6. Meena Daivadanam & Maia Ingram & Kristi Sidney Annerstedt & Gary Parker & Kirsty Bobrow & Lisa Dolovich & Gillian Gould & Michaela Riddell & Rajesh Vedanthan & Jacqui Webster & Pilvikki Absetz & Helle, 2019. "The role of context in implementation research for non-communicable diseases: Answering the ‘how-to’ dilemma," PLOS ONE, Public Library of Science, vol. 14(4), pages 1-22, April.
    7. Ullrich-French, Sarah & Cole, Amy N. & Montgomery, Anna K., 2016. "Evaluation development for a physical activity positive youth development program for girls," Evaluation and Program Planning, Elsevier, vol. 55(C), pages 67-76.
    8. Ebitu, Larmbert & Avery, Helen & Mourad, Khaldoon A. & Enyetu, Joshua, 2021. "Citizen science for sustainable agriculture – A systematic literature review," Land Use Policy, Elsevier, vol. 103(C).
    9. Jessica L. Mackelprang & Janessa M. Graves & Halle M. Schulz, 2024. "Using Photovoice to Explore Determinants of Health among Homeless and Unstably Housed Women," IJERPH, MDPI, vol. 21(2), pages 1-13, February.
    10. Heather Lochotzki & Karen Patricia Williams & Cynthia G. Colen & Olorunfemi Adetona & Charleta B. Tavares & Georgina M. Ginn & Rejeana Haynes & Wansoo Im & Tanya Bils & Darryl B. Hood, 2022. "A Framework for Interfacing and Partnering with Environmental Justice Communities as a Prelude to Human Health and Hazard Identification in the Vulnerable Census Tracts of Columbus, Ohio," IJERPH, MDPI, vol. 19(21), pages 1-18, October.
    11. Tabia Henry Akintobi & Payam Sheikhattari & Emma Shaffer & Christina L. Evans & Kathryn L. Braun & Angela U. Sy & Bibiana Mancera & Adriana Campa & Stephania T. Miller & Daniel Sarpong & Rhonda Hollid, 2021. "Community Engagement Practices at Research Centers in U.S. Minority Institutions: Priority Populations and Innovative Approaches to Advancing Health Disparities Research," IJERPH, MDPI, vol. 18(12), pages 1-14, June.
    12. Kraemer Diaz, Anne E. & Spears Johnson, Chaya R. & Arcury, Thomas A., 2013. "Variation in the interpretation of scientific integrity in community-based participatory health research," Social Science & Medicine, Elsevier, vol. 97(C), pages 134-142.
    13. Nimo Bokore & Susan Lee McGrath & Patricia McGuire & Abdirizak Karod & Mitra Rahimpour & Ajani Asokumar, 2023. "Developing a Trauma-Informed Culturally-Based Intervention (TICBI) Approach for Refugee Resettlement Practices," International Journal of Social Work, Macrothink Institute, vol. 10(1), pages 1-29, June.
    14. Scholz, Roland W. & Czichos, Reiner & Parycek, Peter & Lampoltshammer, Thomas J., 2020. "Organizational vulnerability of digital threats: A first validation of an assessment method," European Journal of Operational Research, Elsevier, vol. 282(2), pages 627-643.
    15. Shin, Hyunsook & Lee, Suk Jeong & Lee, Yu-nah & Shon, Soonyoung, 2019. "Community health needs assessment for a child health promotion program in Kyrgyzstan," Evaluation and Program Planning, Elsevier, vol. 74(C), pages 1-9.
    16. Shelley Gower & Zakia Jeemi & David Forbes & Paul Kebble & Jaya A. R. Dantas, 2022. "Peer Mentoring Programs for Culturally and Linguistically Diverse Refugee and Migrant Women: An Integrative Review," IJERPH, MDPI, vol. 19(19), pages 1-18, October.
    17. Kristine Wray & Akarath Soukhaphon & Brenda Parlee & Amabel D’Souza & Carolina Freitas & Iria Heredia & Chelsea Martin & Carrie Oloriz & Tracey Proverbs & Neal Spicer, 2020. "Aligning Intentions with Community: Graduate Students Reflect on Collaborative Methodologies with Indigenous Research Partners," Sustainability, MDPI, vol. 12(18), pages 1-19, September.
    18. Nancy A Scott & Taryn Vian & Jeanette L Kaiser & Thandiwe Ngoma & Kaluba Mataka & Elizabeth G Henry & Godfrey Biemba & Mary Nambao & Davidson H Hamer, 2018. "Listening to the community: Using formative research to strengthen maternity waiting homes in Zambia," PLOS ONE, Public Library of Science, vol. 13(3), pages 1-16, March.
    19. Tiffany Zellner Lawrence & Tabia Henry Akintobi & Assia Miller & Elaine Archie-Booker & Tarita Johnson & Donoria Evans, 2016. "Assessment of a Culturally-Tailored Sexual Health Education Program for African American Youth," IJERPH, MDPI, vol. 14(1), pages 1-13, December.
    20. Yingling, Marissa E. & Hock, Robert M. & Feinberg, Mark E. & Holbert, Amy A., 2020. "Community-engaged process to adapt evidence-based programs for parents of children with autism spectrum disorder," Children and Youth Services Review, Elsevier, vol. 112(C).

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:21:y:2024:i:2:p:236-:d:1340144. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.