Improving Diversity in Cancer Research Trials: The Story of the Cancer Disparities Research Network

Abstract

The participation of racial and ethnic minorities and underserved populations in clinical trials is a critical link between scientific innovation and improvements in health care delivery and health outcomes. However, these population groups continue to be underrepresented in research. We describe the development of the Cancer Disparities Research Network (CDRN) to improve minority and underserved populations’ participation in biobanking research. Between February – October 2011, we conducted a regional assessment to identify challenges and opportunities for cancer trials and biobanking research across the CDRN. Representatives from ten CDRN biorepository facilities completed an online survey assessing their facilities’ minority biospecimen collection, biobanking practices, and education/outreach initiatives. Representatives of eight facilities also participated in stakeholder interviews. The majority (70%) of facilities reported that specimens were available for research, although only one-tenth of these specimens were from non-White patients. Most facilities collected a patient’s age, gender, race, medical history, and ethnicity with samples; however, less than half also collected family health history, education level, household income, or primary language spoken. In addition, few institutions collected Asian or Hispanic subgroup information. Only a few reported biospecimen collection outreach programs specifically targeting minority and underserved populations. Biospecimen directors and administrators indicated that funding, biospecimen sharing procedures, and standardization barriers limited their facilities from collaborating in biospecimen collection programs, despite their great interest. These findings suggest that the CDRN can provide opportunities for collaboration, resource sharing, and the fostering of research ideas to address cancer disparities in biospecimen research.

Development and validation of the biobanking attitudes and knowledge survey-Spanish (BANKS-SP)

“…As such, participation in biobanks by large numbers of individuals with diverse backgrounds is important. Recently, findings from a survey of repository facilities, in the Midwest and Northwest USA, indicated that only 1.3 % of collected biospecimens were from Hispanic participants, compared to 89 % of biospecimens from White participants, and that about half of the surveyed facilities had made efforts to collect biospecimens in their communities (Simon et al 2014). There is an expanding body of literature that documents the significant efforts to engage ethnically and racially diverse communities in biospecimen research across the US (Braun et al 2014;Cohn et al 2014;Dang et al 2014;Dash et al 2014;Erwin et al 2013;Lopez et al 2014;Luque et al 2012;Rodriguez et al 2013).…”

The Development of a Communication Tool to Facilitate the Cancer Trial Recruitment Process and Increase Research Literacy among Underrepresented Populations

“…Initial impetus for a standardized research communication tool stemmed from the shared goals of the Cancer Disparities Research Network (CDRN) partner institutions, under the auspices of the Biobanking Management Program (BMaP) [18]. Funded by the National Cancer Institute's Center to Reduce Cancer Health Disparities, BMaP seeks to improve minority and underrepresented populations’ participation in clinical trials and biobanking research.…”

“…The regional network spans 15 states from the Midwest to the Northeast. According to a recent regional assessment, nearly half of CDRN biospecimen facilities have conducted community education and outreach to promote biospecimen collection, but only a few reported specific efforts to engage minority populations [18]. …”

“…Needs expressed by CDRN researchers, clinicians, pathologists, administrators, recruiters, and community health educators, along with a community education program [20] and an exhaustive literature review of research literacy among the general public overall and underrepresented populations in particular, resulted in the decision to develop a research communication tool [18]. Objectives were identified for the tool and included: (1) increasing research literacy among potential participants, and (2) facilitating dialogue between clinical trial recruiters and potential research participants.…”

“…Developed in conjunction with 28 partner institutions associated with the Cancer Disparities Research Network, under the auspices of the Biobanking Management Program (BMaP) [18], this tool is intended to empower participants to make fully informed decisions when considering enrollment in cancer clinical trials and biobanking research initiatives. In this paper, we describe the initial processes of a user-centered design cycle for refining the design and content of this research communication tool.…”