Abstract A26: Developing a community-based partnership to facilitate a multilevel community engaged study exploring barriers to cancer care and clinical trial participation among black Bostonians
Authors: Winkfield Karen , Powell Elizabeth , Osuagwa Chidinma , Freeman Elmer , Sprague-Martinez Linda 
Published: October 2015

In Boston, Massachusetts, disparities persist for Black residents across a myriad of chronic conditions including cancer. To assess perceptions in Boston's Black community about cancer and cancer care, the Lazarex-MGH Cancer Care Equity Program (CCEP) partnered with the Center for Community Health Education Research and Services, Inc. (CCHERS), a trusted community-based organization, to perform a specific cancer-focused community assessment. This exploratory community engaged research (CEnR) partnership set out to (1) determine the perceived barriers to participation in clinical trials and cancer care as perceived by diverse Black Bostonians; and (2) develop a grassroots interventional strategy designed to a) reduce barriers to cancer care and b) increase awareness of clinical trials.

Communities are complex and comprise multiple layers. CEnR partnerships can facilitate the development of culturally relevant and community specific strategies to tackle disparities, while simultaneously empowering communities. CEnR is an asset-based research approach that emphasizes the importance of building on existing community knowledge, relationships, and resources to implement sustainable, community-relevant interventions. In addition, CEnR approaches can facilitate the dissemination of intervention results in a way that equally benefits providers, policy-makers, and participants at the local level.

For this project, a multi-level approach is employed. Phase one of the study involved key informant interviews (n=20) with health care providers and patient advocates in community health centers, organizers from grassroots coalitions focused on health (namely cancer), and Black cancer survivors who may or may not have participated in clinical trials. Phase one (P1) data was coded thematically using a consensus coding strategy. Themes from P1 will be used used to develop a focus group script for Phase two (P2) of the study. In P2, a series of focus groups (n=9) will be held in three Boston neighborhoods with residents self-identifying as Black to explore 1) conceptualizations of clinical trials, 2) perceptions of barriers to clinical trial participation and general cancer care, and 3) potential strategies to reduce identified barriers. Coded data will then be presented in “town hall meeting format” to a broader group of community residents and stakeholders.

Findings from P1 are consistent with the literature indicating generational differences in how barriers to cancer care and clinical trials are perceived. In addition, we identified disconnects in what religious leaders and oncologists view as barriers to care. Beyond medical mistrust the overall structure of care presented as barriers. By partnering with community stakeholders we were able to engage a “hard to research population” in exploratory cancer care research the results of which will be used to guide institutional planning.

Citation Format: Karen Winkfield, Elizabeth Powell, Chidinma Osuagwa, Elmer Freeman, Linda Sprague-Martinez. Developing a community-based partnership to facilitate a multilevel community engaged study exploring barriers to cancer care and clinical trial participation among black Bostonians. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A26.