Perceptions of Cancer Care and Clinical Trials in the Black Community: Implications for Care Coordination Between Oncology and Primary Care Teams

Abstract

Background: Despite efforts to ameliorate disparities in cancer care and clinical trials, barriers persist. As part of a multiphase community-engaged assessment, an exploratory community-engaged research partnership, forged between an academic hospital and a community-based organization, set out to explore perceptions of cancer care and cancer clinical trials by black Bostonians.

Materials and methods: Key informant interviews with health care providers and patient advocates in community health centers (CHCs), organizers from grassroots coalitions focused on cancer, informed the development of a focus group protocol. Six focus groups were conducted with black residents in Boston, including groups of cancer survivors and family members. Transcripts were coded thematically and a code-based report was generated and analyzed by community and academic stakeholders.

Results: While some participants identified clinical trials as beneficial, overall perceptions conjured feelings of fear and exploitation. Participants describe barriers to clinical trial participation in the context of cancer care experiences, which included negative interactions with providers and mistrust. Primary care physicians (PCPs) reported being levied as a trusted resource for patients undergoing care, but lamented the absence of a mechanism by which to gain information about cancer care and clinical trials.

Conclusions: Confusion about cancer care and clinical trials persists, even among individuals who have undergone treatment for cancer. Greater coordination between PCPs and CHC care teams and oncology care teams may improve patient experiences with cancer care, while also serving as a mechanism to disseminate information about treatment options and clinical trials.

Implications for practice: Inequities in cancer care and clinical trial participation persist. The findings of this study indicate that greater coordination with primary care physicians (PCPs) and community health center (CHC) providers may be an important step for both improving the quality of cancer care in communities and increasing awareness of clinical trials. However, PCPs and CHCs are often stretched to capacity with caring for their communities. This leaves the oncology community well positioned to create programs to bridge the communication gaps and provide resources necessary to support oncologic care along the cancer continuum, from prevention through survivorship.

Keywords: Barriers to cancer care; Cancer clinical trial; Cancer disparities; Community‐engaged assessment; Interpersonal aspects of cancer care; Minority clinical trial participation.

Figure 1.

A sample of health disparities in Boston. (A): Incidence of diabetes, hypertension, and HIV/AIDS in Boston by race/ethnicity for 2015. (B): Age‐adjusted cancer mortality rates by race/ethnicity from 2005–2009. Blacks in Boston have the highest burden of chronic disease and worse cancer‐specific mortality than any other race/ethnicity. (Adapted from Health of Boston 2015 [4]).

Figure 2.

Questions to ask when approached about a clinical trial. Focus group participants were asked what questions they would encourage a friend to ask if they were considering participation in a clinical trial.

Figure 3.

Mapping black Boston. Map of Boston showing where the different racial/ethnic groups live in relation to the cancer centers and community health centers. Health centers shown have patient populations that are 55%–76% black. (Adapted from NYTimes Mapping Segregation Project [27])