Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for nonEnglish speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants' backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.
The type and quantity of information needed varies between patients who actively seek information and those who tend to avoid information. We analyzed data from a longitudinal study of adult cancer patients from outpatient clinics for whom information needs and behaviors were assessed by survey before and after treatment. We evaluated the relationships between information-seeking style (active, moderately active and passive styles) and demographics, cancer type, and health status for the pretreatment and posttreatment periods and overall. The Generalized Estimating Equations (GEE) approach was used to model the log odds of more active to more passive information-seeking preferences taking into consideration both the pretreatment and posttreatment periods.Results-Analyses included 731 case participants, including female breast cancer patients (51%), male genitourinary cancer patients (18%), and lung cancer patients of both sexes (10%). At pretreatment, 17% reported an active information-seeking style, 69% were moderately active, and 14% were passive. During this period, 19% of those with at least some college education reported being very active compared to 14% of those with less education. With adjustment for all other covariates, male genitourinary and lung cancer patients had a higher odds of having a more active information-seeking style in the pretreatment than in the posttreatment period, with an odds of 4.5 (95% confidence interval [CI]: 2.4-8.4) and 5.4 (95% CI: 2.7-10.6), respectively. Controlling for all covariates, breast cancer patients had 1.5 (95% CI: 1.0-2.1) times higher odds of being more active in seeking information than other patients.Conclusions-Public health researchers and clinicians must work together to develop the most effective strategy for meeting the informational needs of these patients before and after treatment.
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.
This project assessed the impact of a community-based educational program on breast cancer knowledge and screening among Buffalo (NY) immigrant and refugee females. Program participants completed language-matched pre- and post-test assessments during a single session educational program; breast cancer screening information was obtained from the mobile mammography unit to which participants were referred. Pre- and post-test knowledge scores were compared to assess changes in responses to each of the six individual knowledge items, as well as overall. Mammogram records were reviewed to identify Breast Imaging Reporting and Data System (BI-RADS) scores. The proportion of correct responses to each of the six knowledge items increased significantly on the post-program assessments; 33 % of women >40 years old completed mammograms. The findings suggest that a health education program for immigrant and refugee women, delivered in community-based settings and involving interpreters, can enhance breast cancer knowledge and lead to improvements in mammography completion.
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