Factors associated with biomedical research participation within community‐based samples across 3 National Cancer Institute–designated cancer centers

Abstract

Background Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community‐based sample across 3 distinct geographic areas. Methods Three National Cancer Institute–designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. Results African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. Conclusions Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well‐established community partnerships and long‐standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute–designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system‐level and individual‐level barriers to participation in both clinical trials and biospecimen donation for research.

An invitation for optimal inclusivity: Investing in communities to advance equity in biomedical research and cancer care

“…Lessons learned can inform a broader scope for improving diversity in cancer research and care delivery across other NCI-designated cancer centers and non-NCI community cancer centers in which the majority of oncologic care is delivered, and in which resource levels may differ drastically.Using a convenience sample of 4343 participants, Barrett et al administered language-specific survey items that were self-administered or administered by an interviewer through web-based surveys, in-person invitations at community events, or field surveys using tablet devices. 9 The pooled sample in their study was 34% white, 28% black or African American, 19% Latino or Hispanic, 14% Asian, and 5% other, with approximately two-thirds of the sample participants aged <55 years of age and 63% being female. The findings of the study by Barrett et al indicated that African American individuals, Hispanic/Latino individuals, and members of other racial/ethnic minority groups were more likely to be offered opportunities to participate in biomedical research compared with white individuals.…”

“…Cancer March 1, 2020 In deconstructing the findings of the study by Barrett et al, 9 several sociodemographic factors were found to be related to the degree of participation in biospecimen clinical trials. For example, having been asked to participate in biomedical research was found to be significantly and positively associated with black/African American, Hispanic, and other race/ethnicity; an educational level of college graduate or higher and high school and some college; metropolitan residence; survey language; and being born in the United States.…”

“…Barrett et al also reported that participants with a higher level of education were found to be less willing to participate in clinical trials or biomedical research compared with those with less education. 9 This is an intriguing finding. Barrett et al posited that the gap between opportunity and willingness among educated populations might be related to mistrust, and suggested further exploration.…”

“…Barrett et al posited that the gap between opportunity and willingness among educated populations might be related to mistrust, and suggested further exploration. 9 Nevertheless, one wonders whether health literacy might play a role. Health literacy includes cognitive and social skills that determine an individual's motivation and ability to receive, understand, and use information and entails basic, interactive, and critical-level skills.…”

“…The findings of the study by Barrett et al 9 have illustrated the need for community trust. But how is trust earned?…”