Community Networks Program Research Articles

The NCI Center to Reduce Cancer Health Disparities: Moving Forward to Eliminate Cancer Health Disparities and Diversify the Cancer Biomedical Workforce

The National Cancer Institute's (NCI) Center to Reduce Cancer Health Disparities (CRCHD) was established in 2001 with the purpose of confronting and eliminating cancer health disparities, while increasing workforce diversity in cancer research.Over the last two decades, CRCHD has generated a broad range of research, training, and community outreach activities to address these overarching goals through a variety of programs including the Continuing Umbrella of Research Experiences (CURE), Partnerships to Advance Cancer Health Equity (PACHE), Special Populations Networks (SPN), Community Networks Program (CNP), CNP Centers (CNPC), and Patient Navigation Research Program (PNRP).CRCHD, through its CURE and now its Intramural CURE (iCURE) programs, has been fully dedicated to training the next generation of competitive researchers from backgrounds typically underrepresented in the cancer and cancer health disparities research fields. Today, CRCHD leads NCI's efforts in supporting research training and career development experiences beginning as early as middle school and continuing through to tenured track appointments.CRCHD has also developed a robust basic research focus in cancer disparities, which has recently expanded into translational disparities research and the generation of novel, authenticated animal models appropriate for advancing disparities research investigations.Additionally, CRCHD has fostered an integrated networks infrastructure to complement and support its disparities research and diversity training efforts, as well as provide cancer education and outreach among racially and ethnically diverse and medically underserved communities.Moving forward, the CRCHD will continue its steadfast efforts to move us closer to the day when diversity is a given and disparities no longer exist.

Building capacity for community-based participatory research to address cancer disparities: Case report from a Community Networks Program Center

•Building Capacity for Community-Based Participatory Research to Address Cancer Disparities: Case report from a Community Networks Program Center•The majority of the 22 trainees were female (64%) and racial/ethnic minorities (55%)•Trainees reported an improved understanding of community-based participatory research•The Training Core facilitated relationships between trainees and community partners•Trainees identified strengths and challenges of specific Training Core components

Factors Influencing Recommended Cancer Screening in Low-Income African American Women in Tennessee.

This study examined the factors that predict recommended screening compliance to cervical, breast, and colorectal cancers in low-income African American women. It also examined obstacles to screenings by geographic region and screening status. As a part of the Meharry Community Networks Program (CNP) needs assessment, a 123-item community survey was administered to assess demographic characteristics, health care access and utilization, and screening practices for various cancers in low-income African Americans. For this study, only African American women 40 years and older (n = 308) were selected from the Meharry CNP community survey database. There were several predictors to recommended screening such as being employed and having health insurance (P < 0.05). Additionally, the obstacles to screening posed a similar level of difficulty for participants from different geographic areas. Sociodemographic differences and obstacles of screening need to be addressed in educational interventions aimed at improving cancer screenings.

Mentoring, Training, and Scholarly Productivity Experiences of Cancer-Related Health Disparities Research Trainees: Do Outcomes Differ for Underrepresented Scientists?

The study aims to explore variation in scholarly productivity outcomes by underrepresented status among a diverse sample of researchers in a community-engaged training program. We identified 141 trainees from a web-based survey of researchers in the National Cancer Institute-funded, Community Networks Program Centers (CNPCs) (2011-2016). We conducted a series of multiple logistic regression models to estimate the effect of National Institutes of Health (NIH)-defined underrepresented status on four, self-reported, scholarly productivity outcomes in the previous 5years: number of publications (first-authored and total) and funded grants (NIH and any agency). Sixty-five percent (n = 92) indicated NIH underrepresented status. In final adjusted models, non-NIH underrepresented (vs. underrepresented) trainees reported an increased odds of having more than the median number of total publications (> 9) (OR = 3.14, 95% CI 1.21-8.65) and any grant funding (OR = 5.10, 95% CI 1.77-14.65). Reporting ≥ 1 mentors (vs. none) was also positively associated (p < 0.05) with these outcomes. The CNPC underrepresented trainees had similar success in first-authored publications and NIH funding as non-underrepresented trainees, but not total publications and grants. Examining trainees' mentoring experiences over time in relation to scholarly productivity outcomes is needed.

Abstract IA28: Colorectal cancer screening and diagnostic services for urban and rural safety-net-settings

Abstract Background: Colorectal cancer (CRC) is a leading cause of cancer mortality and a relatively common cancer diagnosis in the United States. CRC screening is effective and cost-effective for reducing mortality. Screening rates for CRC, while increasing, are lower than for many other cancer screening tests. There is a clear benefit to early detection. Early stage CRC is often treatable, with five year survival rates over 90%. Later stage CRCs are associated with poorer outcomes. Furthermore, CRC Screening is notable in its ability to prevent cancers through the detection and removal of pre-cancerous polyps. There are several USPSTF-recommended options for screening. Cancer health disparities are evident in CRC. Under- or un-insured and lower income adults generally have lower rates of screening, later stage at diagnosis, and poorer survival outcomes. Many of these adults seek care in the healthcare “safety-net”, including federally qualified health centers. Such settings themselves are often under-resourced. Methods: Our team has studied CRC screening from multiple perspectives in the safety-net setting across several studies. Most recently, we conducted a cluster randomized trial to promote CRC screening across several rural and urban health centers. The trial applied principles of community-based participatory research and intervened at the patient and provider/clinic levels. Implementation outcomes were monitored and recorded. Findings: Implementation of screening and screening programs in safety-net settings face unique challenges and researchers need to be aware of the context in which these patients are seeking and receiving their healthcare. Given the high cost of diagnostic follow-up for positive FOBT/.FIT, and the costs of colonoscopy even for screening, many safety-net patients face barriers to screening and follow-up. This talk will explore the cross-section of health disparities research and implementation and dissemination research, highlighting data from community-engaged research and community-clinical-academic partnership in the Program for the Elimination of Cancer Disparities, an NCI-funded community networks program center. Citation Format: Aimee S. James. Colorectal cancer screening and diagnostic services for urban and rural safety-net-settings. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr IA28.

Perceptions and Receipt of Cancer Screening among African Americans: A Community Networks Program Project

Objective: Minority groups constitute one of the nation’s highest cancer risk groups. Historically, these groups have not been adequately informed about cancer, its prevention and/or treatment. The purpose of this study was to examine participants’ receipt of cancer screening and to explore perceptions of barriers to and facilitators of cancer screening. Methods: A two-part study design consisting of a survey and focus group was conducted among African Americans residents of neighborhoods geographically defined as low-income areas of Chattanooga, Memphis, and Nashville in the state of Tennessee. The survey was administered to 1071 participants, and 12 focus groups were conducted with a total of 112 participants, with both sets of participants being residents of similarly defined underserved communities served by the community health centers. Results: Overall, 51% of surveyed respondents were females; the majority (75%) had a yearly income of less than $25,000; and 67% reported 12 years of education or less. Most surveyed respondents had a family history of cancer. More than 30% and 64% of male respondents over 50 years old did not receive prostate cancer and colorectal cancer screening, respectively; 58% of women 50 years and older were not screened for colorectal cancer; 28% of women over 40 years old did not receive breast cancer screening. Barriers to cancer screening included: lack of information about cancer screening and treatments, cost of cancer treatment and fear. The need for more information about cancer and cancer treatment, as well as the involvement of churches to increase cancer screening awareness was identified as facilitators. Conclusion: This study provides information into the structural and psychological barriers in cancer screening. It describes the self-reported prevalence/frequency of screening among men and women in our target population, and the associated facilitators to screening.

Abstract A13: Developing easy-to-read cancer education curriculum materials for the Appalachian population: The power of community collaboration

Abstract Appalachian and rural populations historically have been subject to health disparities due to factors of lack of access to care and services, poverty, and low education. The Appalachia Community Cancer Network (ACCN) is one of 23 Community Networks Program Centers funded by the National Cancer Institute (NCI) and addresses the cancer disparity issues of the Appalachian population in Kentucky, Ohio, Pennsylvania, Virginia, and West Virginia. ACCN is a collaboration of academic and community partners involved in increasing cancer awareness and education, conducting community-based participatory research, and creating mentoring and training opportunities for junior researchers. All ACCN projects and initiatives are informed by regional and program-wide community advisory boards to ensure that the work being done is culturally relevant and sensitive to the needs of rural and medically underserved audiences. Examples of how advisory boards and community partners are utilized include providing review and feedback on cancer educational materials, assistance with recruitment of faith-based partners and participants in research projects, and clinical trials awareness programs. Responding to a request by its community coalitions to develop a tool with easier to read basic cancer information for use with people who are traditionally hard to engage, ACCN developed Undertanding Cancer. This collaborative work is a five-chapter resource that includes not only text, but a glossary of terms, pre- and post-survey assessments, lists of resources, Power Point slides, and a CD-ROM with all of the materials. The modules have been carefully and exclusively adapted from NCI resources and tailored for use in the rural Appalachian culture. All of the materials were pilot tested with the ACCN Community Advisory Committee and regional Advisory Boards in Kentucky, Ohio, Pennsylvania, Virginia, and West Virginia. This train-the-trainer curriculum was evaluated by rolling it out across five states with the goal of training at least 150 trainers. A pre/post-test model was used to measure a change in knowledge. Additionally changes in attitudes and behaviors were assessed for all participants using participant information forms, evaluations, healthy changes checklist, and trainer activity reports. The usefulness of this community-based project is in being designed to help partners use the modules creatively and effectively in different community settings. This session will focus on the development of the resource, as well as the dissemination and evaluation, and lessons learned. An unexpected outcome of the training curriculum is the community's response to needing additional resources that are similar in design and structure of the orignal resource but focused on specific cancer sites and in other formats besides Power Point slides. The result is the development of a companion piece, Understanding Colon Cancer, which is available as a table-top flip chart or Power Point slides. Dissemination and evaluation of Understanding Colon Cancer is ongoing at this time. This poster session would be beneficial for anyone planning to develop easy-to-read cancer education materials. Acknowledgements: Appalachia Community Cancer Network (ACCN), Mary Babb Randolph Cancer Center, West Virginia University, ACCN Community Advisory Committee and regional Community Advisory Boards. Inspiration for this publication is credited to Cancer 101: A Cancer Education Training Program for American Indians and Alaska Natives. Citation Format: David R. Reese, Mary Ellen Conn. Developing easy-to-read cancer education curriculum materials for the Appalachian population: The power of community collaboration. [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 A13.

Working to Eliminate Cancer Health Disparities from Tobacco: A Review of the National Cancer Institute's Community Networks Program.

In 2005, the National Cancer Institute funded the Community Networks Program (CNP), which aimed to reduce cancer health disparities in minority racial/ethnic and underserved groups through community-based participatory research, education, and training. The purpose of this study was to describe the CNP model and their tobacco-related work in community-based research, education, and training using a tobacco disparities research framework. We conducted a comprehensive review of the CNP tobacco-related activities including publications, published abstracts, research activities, trainee pilot studies, policy-related activities, educational outreach, and reports produced from 2005-2009. Two authors categorized the tobacco-related activities and publications within the framework. Although there was no mandate to address tobacco, the CNPs produced 103 tobacco-related peer-reviewed publications, which reflects the largest proportion (12%) of all CNP cancer-related publications. Selected publications and research activities were most numerous under the framework areas "Psychosocial Research," "Surveillance," "Epidemiology," and "Treatment of Nicotine Addiction." Thirteen CNPs participated in tobacco control policymaking in mainstream efforts that affected their local community and populations, and 24 CNPs conducted 1147 tobacco-related educational outreach activities. CNP activities that aimed to build research and infrastructure capacity included nine tobacco-related pilot projects representing 16% of all CNP cancer-related pilot projects, and 17 publications acknowledging leveraged partnerships with other organizations, a strategy encouraged by the CNP. The CNP is a promising academic-community model for working to eliminate tobacco-related health disparities. Future efforts may address scientific gaps, consider collaboration across groups, assess the extent of operationalizing community-based participatory research, and improve common tracking measures.

Perceptions of Cancer Clinical Research Among African American Men in North Carolina

The authors are grateful to the men and women who participated in our Focus Groups and shared with us their very personal cancer experience. Their insight is valuable, and will inform and improve cancer care for future generations. The authors thank the Greensboro area Community Research Advocates - especially April Durr, Elvira Mebane, Marie McAdoo, Kathy Norcott, and Cindy Taylor - who assisted in the conduct of the study, including interpretation of results. They also thank Gratia Wright of First Research Group for her expertise in moderating and executing all of the focus groups, and Lindsey Haynes-Maslow for her assistance in responding to reviewer comments. The study was funded as a part of the Carolina Community Network program, funded by a grant from the National Cancer Institute (U01-CA114629). This study was reviewed and approved by the Institutional Review Board (IRB) at the University of North Carolina at Chapel Hill. The problem of cancer health disparities is substantial. Clinical trials are widely advocated as a means of reducing disparities and bringing state-of-the-art care to the broader community, where most cancer care is delivered. This study sought to develop a better understanding of why disproportionately few African American men enroll in clinical trials given their substantial cancer burden. This study applied community-based participatory research (CBPR) methods to design and conduct four focus groups of African American male cancer survivors and their caregivers in North Carolina. Among major themes, participants expressed confusion about the relationship between clinical trials, treatment, and research: signifying patient confusion and misinterpretation of common clinical trial terminology. Social norms including gender barriers and generational differences remain problematic; participants often reported that men do not talk about health issues, are unwilling to go to the doctor, and exhibit misapprehension and distrust regarding trials. Participants perceived this misunderstanding as detrimental to community health and expressed the need for more clarity in clinical trials information and a more fundamental social openness and communication about cancer detection and treatment. Findings indicate the importance of clinical trial education in both traditional provider referral to trials and also in general patient navigation. To dispel pervasive misapprehension regarding placebos, clinical trial information should emphasize the role of standard care in modern cancer treatment trials. Many participants described willingness to participate in a trial upon physician recommendation, suggesting merit in improving patient-physician communication through culturally competent terminology and trial referral systems.

A Tale of Two Community Networks Program Centers: Operationalizing and Assessing CBPR Principles and Evaluating Partnership Outcomes.

Community Networks Program (CNP) centers are required to use a community-based participatory research (CBPR) approach within their specific priority communities. Not all communities are the same and unique contextual factors and collaborators' priorities shape each CBPR partnership. There are also established CBPR and community engagement (CE) principles shown to lead to quality CBPR in any community. However, operationalizing and assessing CBPR principles and partnership outcomes to understand the conditions and processes in CBPR that lead to achieving program and project level goals is relatively new in the science of CBPR. We sought to describe the development of surveys on adherence to and implementation of CBPR/CE principles at two CNP centers and examine commonalities and differences in program-versus project-level CBPR evaluation. A case study about the development and application of CBPR/CE principles for the Missouri CNP, Program for the Elimination of Cancer Disparities, and Minnesota CNP, Padres Informados/Jovenes Preparados, surveys was conducted to compare project versus program operationalization of principles. Survey participant demographics were provided by CNP. Specific domains found in CBPR/CE principles were identified and organized under an existing framework to establish a common ground. Operational definitions and the number of survey items were provided for each domain by CNP. There are distinct differences in operational definitions of CBPR/CE principles at the program and project levels of evaluation. However, commonalities support further research to develop standards for CBPR evaluation across partnerships and at the program and project levels.

The National Cancer Institute's Community Networks Program Initiative to Reduce Cancer Health Disparities: Outcomes and Lessons Learned.

We describe reach, partnerships, products, benefits, and lessons learned of the 25 Community Network Programs (CNPs) that applied community-based participatory research (CBPR) to reduce cancer health disparities. Quantitative and qualitative data were abstracted from CNP final reports. Qualitative data were grouped by theme. Together, the 25 CNPs worked with more than 2,000 academic, clinical, community, government, faith-based, and other partners. They completed 211 needs assessments, leveraged funds for 328 research and service projects, trained 719 new investigators, educated almost 55,000 community members, and published 991 articles. Qualitative data illustrated how use of CBPR improved research methods and participation; improved knowledge, interventions, and outcomes; and built community capacity. Lessons learned related to the need for time to nurture partnerships and the need to attend to community demand for sustained improvements in cancer services. Findings demonstrate the value of government-supported, community-academic, CBPR partnerships in cancer prevention and control research.

Targeting and Tailoring Health Communications in Breast Screening Interventions.

Members of underrepresented minority (URM) groups are at higher risk of disproportionately experiencing greater breast cancer-related morbidity and mortality and thus, require effective interventions that both appropriately target and tailor to their unique characteristics. We sought to describe the targeting and tailoring practices used in the development and dissemination of three breast cancer screening interventions among URM groups. Three national Community Network Programs (CNPs) funded by the National Cancer Institute have focused on breast cancer screening interventions as their major research intervention. Each targeted different populations and used participatory research methods to design their intervention tailored to the needs of their respective audience. The Alameda County Network Program (ACNP) to Reduce Cancer Disparities partnered with community members to design and conduct 2-hour "Tea Party" education sessions for Afghan women. The Kansas Community Cancer Disparities Network co-developed and deployed with community members a computerized Healthy Living Kansas (HLK) Breast Health program for rural Latina and American Indian women. The Johns Hopkins Center to Reduce Cancer Disparities employed a train-the-trainer COACH approach to educate urban African-American women about breast cancer. Each CNP program targeted diverse URM women and, using participatory approaches, tailored a range of interventions to promote breast cancer screening. Although all projects shared the same goal outcome, each program tailored their varying interventions to match the target community needs, demonstrating the importance and value of these strategies in reducing breast cancer disparities.

Introducing Biospecimen Science to Communities: Tools from Two Cities.

This article describes community-engaged processes employed by two Community Network Program Center (CNPC) sites located in Tampa, Florida, and Buffalo, New York, toward the development of Spanish/English educational products about biobanking and biospecimen research. Each CNPC carried out a community-based participatory research (CBPR) approach that underscored six essential components that moved concepts to a final educational product in a highly participatory fashion. The similar CBPR processes at the two locations focused on the same topic, resulted in different engagement approaches and tools for their respective communities: 1) DVD and brochure toolkit and 2) PowerPoint, group program with audience response system (ARS). We detail a comparison of methods and applications for using these tools among diverse community groups to advance understandings about genetic and biomedical research technologies. Ultimately, these tools and associated educational efforts emphasize the critical value of co-learning among academic and community members in biobanking and biospecimen research.

The National Cancer Institute’s Community Networks Program Initiative to Reduce Cancer Health Disparities: Outcomes and Lessons Learned

The National Cancer Institute’s Community Networks Program Initiative to Reduce Cancer Health Disparities: Outcomes and Lessons Learned

Considering the Role of Stress in Populations of High-Risk, Underserved Community Networks Program Centers.

Cancer disparities are associated with a broad range of sociocultural determinants of health that operate in community contexts. High-risk populations may be more vulnerable to social and environmental factors that lead to chronic stress. Theoretical and empirical research indicates that exposure to contextual and sociocultural stress alters biological systems, thereby influencing cancer risk, progression, and, ultimately, mortality. We sought to describe contextual pathways through which stress likely increases cancer risk in high-risk, underserved populations. This review presents a description of the link between contextual stressors and disease risk disparities within underserved communities, with a focus on 1) stress as a proximal link between biological processes, such as cytokine responses, inflammation, and cancer and 2) stress as a distal link to cancer through biobehavioral risk factors such as poor diet, physical inactivity, circadian rhythm or sleep disruption, and substance abuse. These concepts are illustrated through application to populations served by three National Cancer Institute-funded Community Networks Program Centers (CNPCs): African Americans in the Deep South (the South Carolina Cancer Disparities Community Network [SCCDCN]), Native Hawaiians ('Imi Hale-Native Hawaiian Cancer Network), and Latinos in the Lower Yakima Valley of Washington State (The Center for Hispanic Health Promotion: Reducing Cancer Disparities). Stress experienced by the underserved communities represented in the CNPCs is marked by social, biological, and behavioral pathways that increase cancer risk. A case is presented to increase research on sociocultural determinants of health, stress, and cancer risk among racial/ethnic minorities in underserved communities.

Mentoring and Training of Cancer-Related Health Disparities Researchers Committed to Community-Based Participatory Research.

The National Cancer Institute's (NCI) Community Networks Program Centers (CNPCs) provide community-based participatory research (CBPR)-oriented mentoring and training to prepare early-stage/midcareer investigators and student trainees (trainees) in disparities reduction. This paper describes the academic, mentoring, training, and work-life balance experiences of CNPC-affiliated trainees. We used a collaborative and iterative process to develop a 57-item, web-based questionnaire completed by trainees from the 23 CNPCs between August 2012 and February 2013. Their CNPC mentors completed a 47-item questionnaire. Descriptive statistics were calculated. The final analytic sample included 189 of 269 individuals (70%) identified as active participants in CNPC research or training/mentoring. Mentors (n=45) were mostly non-Hispanic White (77.8%) and 48.9% were male. Mentors published a median of 6 (interquartile range [IQR], 3-12) first-authored and 15 (IQR, 6-25) senior authored manuscripts, and secured 15 (IQR, 11-29) grants from the National Institutes of Health (NIH) and other sources in the previous 5 years. Most trainees (n=144) were female (79.2%), 43.7% were underrepresented racial/ethnic minorities, and 36.8% were first-generation college graduates. Over the previous 5 years, trainees reported a median of 4 (IQR, 1-6) publications as first author and 4 (IQR, 2-8) as co-author; 27.1% reported having one or more NIH R01s. Trainees reported satisfaction with their CNPC mentor (79.1%) and confidence in demonstrating most CBPR competencies. The CNPC training program consists of a scientifically productive pool of mentors and trainees. Trainees reported rates of scholarly productivity comparable to other national training programs and provided insights into relationships with mentors, academic pressures, and professional-personal life balance.

Fulfilling Ethical Responsibility: Moving Beyond the Minimal Standards of Protecting Human Subjects from Research Harm.

Rules for protecting human subjects, in place federally since 1974, have focused primarily on guarding against placing research subjects at social, physical, or psychological risk or violating their privacy and confidentiality. Nevertheless, high-risk communities are routinely subjected to "sins of omission," which limit access to potentially significant research opportunities and result in the absence of studies that could confer high degree of community beneficence. To describe "sins of omission" and provide examples from the Community Networks Program Centers (CNPC) to illustrate how community-based participatory research (CBPR) can prevent them. CBPR is an effective antidote to sins of omission. Activities undertaken by the CNPCs illustrate how adherence to CBPR principles can improve research access and outcomes. By working with community members as partners, we expand the concept of beneficence to include "community beneficence," thus reducing the probability of "sins of omission."

A Framework for Training Transdisciplinary Scholars in Cancer Prevention and Control.

Traditionally, postdoctoral training programs largely have focused efforts within a single discipline or closely related fields. Yet, addressing the complex questions around cancer prevention and control increasingly requires the ability to work and communicate across disciplines in order to gain a perspective that encompasses the multilevel and multifaceted issues involved with this public health issue. To address this complexity, a transdisciplinary training program was implemented to cultivate the professional and scientific development of the postdoctoral fellows in Washington University in St Louis School of Medicine's Division of Public Health Sciences and NCI-funded centers (Community Networks Program Center and Transdisciplinary Research in Energetics in Cancer Center). Fellows are matched with primary mentors and assemble a multidisciplinary mentoring team. Structured programs support the transition of fellows from disciplinary trainees to independent transdisciplinary scholars and provide exposure to multiple disciplines. This article describes the training program, challenges encountered in implementation, solutions to those problems, and the metrics employed to evaluate the program's success. The goal of the program is to train emerging investigators in the conceptual bases, language, and practices that underlie a transdisciplinary perspective on cancer prevention and control research, to create an infrastructure for continued cross-discipline dialogue and collaboration, and to develop disseminable strategies for such training.

Engaging diverse populations about biospecimen donation for cancer research.

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 non-English 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 Impact of a Community-Based Clinical Trial Educational Intervention among Underrepresented Chinese Americans

Clinical trials are a critical resource for the discovery of new prevention, diagnostic, and treatment methods for cancer. The most effective prevention and treatment modalities are based on previous clinical trial results. However, participation in clinical trials is underrepresented by racial/ethnic minority populations, Asian Americans in particular. Asian Americans are the least represented of any ethnic groups in clinical trials. The purpose of this study is to develop and evaluate a culturally and linguistically appropriate community-based educational intervention to increase knowledge of and intent to participate in cancer clinical trials among underrepresented Chinese Americans. Community-Based Participatory Research approach was used to guide the development, cultural tailoring, implementation, and evaluation of clinical trial intervention. First, 22 Asian community representatives were recruited as community health educators (CHE) who received 12-hour training on clinical trial education. Second, 262 members were recruited from 11 Chinese community organizations. Of those recruited, a total of 247 eligible Chinese enrolled and participated in the clinical trial education delivered by trained CHEs. Participants completed pretest before and posttest after the intervention. Fifteen of 21 measures of clinical trial knowledge showed significant changes post the intervention (P < 0.05). Education remained the sole demographic factor increasing clinical trial knowledge in multivariate analysis. Clinical trial education should emphasize both benefits to science and the larger Asian community. This community-based clinical trial intervention demonstrated promising results and has potential to enhance recruitment and participation in clinical trial research among the underrepresented Asian Americans. Improving clinical trial participation in the fast-growing Asian American population is key to dissemination of health innovations targeted to diminish health disparities.