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

• Published in: International journal of environmental research and public health Vol. 21; no. 2; p. 236
• Main Authors: Hippalgaonkar, Neha, Nguyen, Ryan Huu-Tuan, Cohn, Eliza Brumer, Horowitz, Joseph, Waite, Ana Williams, Mersha, Tigist, Sandoval, Christen, Khan, Sarah, Salum, Kauthar, Thomas, Paris, Murphy, Anne Marie, Brent, Beulah, Coleman, Lolita, Khosla, Paramjeet, Hoskins, Kent F, Henderson, Vida, Carnahan, Leslie R
• Format: Journal Article
• Language: English
• Published: Switzerland MDPI AG 17.02.2024
• Subjects: Black people; Breast cancer; Breast Neoplasms; Cancer research; Clinical medicine; Collaboration; Communication; Community; Community Participation; Community-Based Participatory Research; Community-Institutional Relations; Data collection; Female; Health disparities; Human subjects; Humans; Literacy; Medical research; Participation; Public health; Research Design; Researchers; clinical trial; health disparity; cancer survivors; minority and vulnerable populations; patient participation; decision making; breast neoplasm
• ISSN: 1660-4601; 1661-7827; 1660-4601
• DOI: 10.3390/ijerph21020236

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.