Willingness to participate in various nontherapeutic cancer research activities among urban and rural African American and Latinx healthy volunteers.

PURPOSE: Inclusion of racial/ethnic minorities in cancer research can reduce disparities in health outcomes; however, data regarding barriers and motivators to participation are sparse. This study assessed African American (AA) and Latinx healthy volunteers' perspectives regarding willingness to participate in noninvasive and invasive research activities. METHODS: Using a 38-item questionnaire adapted from the Tuskegee Legacy Project Questionnaire, we assessed willingness to participate in 12 research activities, offering 27 possible barriers and 14 motivators. The sample was segmented into four subgroups by AA/Latinx and rural/urban. RESULTS: Across five states and Puerto Rico, 533 participants completed questionnaires. Overall, participants were more willing to participate in noninvasive versus invasive procedures, although, all subgroups were willing to participate in research if asked. Rural AA were most willing to complete a survey or saliva sample, while rural Latinx were least willing. Urban AA were least willing to provide cheek swab, while rural counterparts were most willing. Self-benefit and benefit to others were among the top three motivators for all subgroups. Curiosity was a primary motivator for urban AA while obtaining health information motivated rural Latinx. Primary barriers included fears of side effects and being experimented on, lack of information, and lack of confidentiality. CONCLUSIONS: Latinx and AAs are willing to participate in the continuum of nontherapeutic research activities suggesting their lack of participation may be related to not being asked. Inclusive enrollment may be achieved by assessing needs of participants during the design phase of a study in order to reduce barriers to participation.

Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations.

This article provides an overview of the current literature on seven cancer sites that may disproportionately affect lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. For each cancer site, the authors present and discuss the descriptive statistics, primary prevention, secondary prevention and preclinical disease, tertiary prevention and late-stage disease, and clinical implications. Finally, an overview of psychosocial factors related to cancer survivorship is offered as well as strategies for improving access to care.

Disparities in survival by insurance status in patients with Hodgkin lymphoma.

BACKGROUND: The association between insurance status and outcomes has not been well established for patients with Hodgkin lymphoma (HL). The purpose of this study was to examine the disparities in overall survival (OS) by insurance status in a large cohort of patients with HL. METHODS: The National Cancer Data Base (NCDB) was used to evaluate patients with stage I to IV HL from 1998 to 2011. The association between insurance status, covariables, and outcomes was assessed in a multivariate Cox proportional hazards model. Survival was estimated with the Kaplan-Meier method. RESULTS: Among the 76,681 patients within the NCDB, 45,777 patients with stage I to IV HL were eligible for this study (median follow-up, 6.0 years). The median age was 39 years (range, 18-90 years). The insurance status was as follows: 3247 (7.1%) were uninsured, 7962 (17.4%) had Medicaid, 30,334 (66.3%) had private insurance, 3746 (8.2%) had managed care, and 488 (1.1%) had Medicare. Patients with an unfavorable insurance status (Medicaid/uninsured) were at a more advanced stage, had higher comorbidity scores, had B symptoms, and were in a lower income/education quartile (all P < .01). These patients were less likely to receive radiotherapy and start chemotherapy promptly and were less commonly treated at academic/research centers (all P < .01). Patients with unfavorable insurance had a 5-year OS of 54% versus 87% for those favorably insured (P < .01). When adjustments were made for covariates, an unfavorable insurance status was associated with significantly decreased OS (hazard ratio, 1.60; 95% confidence interval, 1.34-1.91; P < .01). The unfavorable insurance status rate increased from 22.8% to 28.8% between 1998 and 2011. CONCLUSIONS: This study reveals that HL patients with Medicaid and uninsured patients have outcomes inferior to those of patients with more favorable insurance. Targeting this subset of patients with limited access to care may help to improve outcomes. Cancer 2015;121:3435-43. © 2015 American Cancer Society.

The Yo me cuido® Program: Addressing Breast Cancer Screening and Prevention Among Hispanic Women.

Breast cancer is less likely to be diagnosed at the earliest stage in Hispanic/Latino (Hispanic) women compared to non-Hispanic White women, even after accounting for differences in age, socioeconomic status, and method of detection. Moffitt Cancer Center created a comprehensive health education program called Yo me cuido (®) (YMC) to address and reduce breast cancer disparities among Spanish- and English-speaking Hispanic women by providing breast cancer and healthy lifestyles awareness and education, and promoting breast cancer screenings, reminders, and referrals for women 40 years and older. The purpose of this paper is to showcase the innovative approaches and methods to cancer prevention and early detection of the YMC program, and to promote it as an effective tool for improving outcomes in community health education, outreach, and engagement activities with Hispanic populations. Key components of the program include educational workshops, mammogram referrals, and a multimedia campaign. The YMC program is unique because of its approaches in reaching the Hispanic population, such as delivering the program with compassionate services to empower participants to live a healthier lifestyle. Additionally, direct follow-up for mammography screenings is provided by program staff. From 2011 to 2013, YMC has educated 2,226 women and 165 men through 93 workshops. About 684 (52 %) women ages 40 and older have had a screening mammogram within their first year of participating in the program. The YMC program is an innovative cancer education and outreach program that has demonstrated a positive impact on the lives of the Hispanic community in the Tampa Bay region.

Bridging Health Disparities in the Data-Driven World of Artificial Intelligence: A Narrative Review.

BACKGROUND: Artificial intelligence (AI) holds exciting potential to revolutionize healthcare delivery in the United States. However, there are concerns about its potential to perpetuate disparities among historically marginalized populations. OBJECTIVE: Following the guidelines of Preferred Reporting Items for Systematic Reviews and Meta-Analyses, we conducted a narrative review of current literature on AI and health disparities in the United States. We aimed to answer the question, Does AI have the potential to reduce or eliminate health disparities, or will its use further exacerbate these disparities? METHODS: We searched the Ovid MEDLINE electronic database to identify and retrieve publications discussing AI and its impact on racial/ethnic health disparities. Articles were included if they discussed AI as a tool to mitigate racial health disparities with or without bias in developing and using AI. RESULTS: This review included 65 articles. We identified six themes of limitations in AI that impact health equity: (1) biases in AI can perpetuate and exacerbate racial and ethnic inequities; (2) equity in algorithms should be a priority; (3) lack of diversity in the field of AI is concerning; (4) the need for regulation and testing algorithms for accuracy; (5) ethical standards for AI in health care are needed; and (6) the importance of promoting transparency and accountability. CONCLUSIONS: While AI promises to enhance healthcare outcomes and address equity concerns, risks and challenges are associated with its implementation. To maximize the use of AI, it must be approached with an equity lens during all phases of development.

Empowering underserved populations through cancer prevention and early detection.

It is well documented that cancer is disproportionately distributed in racial/ethnic minority groups and medically underserved communities. In addition, cancer prevention and early detection represent the key defenses to combat cancer. The purpose of this article is to showcase the comprehensive health education and community outreach activities at the H. Lee Moffitt Cancer Center and Research Institute (Moffitt) designed to promote and increase access to and utilization of prevention and early detection services among underserved populations. One of Moffitt's most important conduits for cancer prevention and early detection among underserved populations is through its community education and outreach initiatives, in particular, the Moffitt Program for Outreach Wellness Education and Resources (M-POWER). M-POWER works to empower underserved populations to make positive health choices and increase screening behaviors through strengthening collaboration and partnerships, providing community-based health education/promotion, and increasing access to care. Effective, empowering, and culturally and linguistically competent health education and community outreach, is key to opening the often impenetrable doors of cancer prevention and early detection to this society's most vulnerable populations.

Establishing the infrastructure to conduct comparative effectiveness research toward the elimination of disparities: a community-based participatory research framework.

In Tampa, Florida, researchers have partnered with community- and faith-based organizations to create the Comparative Effectiveness Research for Eliminating Disparities (CERED) infrastructure. Grounded in community-based participatory research, CERED acts on multiple levels of society to enhance informed decision making (IDM) of prostate cancer screening among Black men. CERED investigators combined both comparative effectiveness research and community-based participatory research to design a trial examining the effectiveness of community health workers and a digitally enhanced patient decision aid to support IDM in community settings as compared with "usual care" for prostate cancer screening. In addition, CERED researchers synthesized evidence through the development of systematic literature reviews analyzing the effectiveness of community health workers in changing knowledge, attitudes and behaviors of African American adults toward cancer prevention and education. An additional systematic review analyzed chemoprevention agents for prostate cancer as an emerging technique. Both of these reviews, and the comparative effectiveness trial supporting the IDM process, add to CERED's goal of providing evidence to eliminate cancer health disparities.

Designing a community-based lay health advisor training curriculum to address cancer health disparities.

INTRODUCTION: Racial and ethnic minorities have disproportionately higher cancer incidence and mortality than their White counterparts. In response to this inequity in cancer prevention and care, community-based lay health advisors (LHAs) may be suited to deliver effective, culturally relevant, quality cancer education, prevention/screening, and early detection services for underserved populations. APPROACH AND STRATEGIES: Consistent with key tenets of community-based participatory research (CBPR), this project engaged community partners to develop and implement a unique LHA training curriculum to address cancer health disparities among medically underserved communities in a tricounty area. Seven phases of curriculum development went into designing a final seven-module LHA curriculum. In keeping with principles of CBPR and community engagement, academic-community partners and LHAs themselves were involved at all phases to ensure the needs of academic and community partners were mutually addressed in development and implementation of the LHA program. DISCUSSION AND CONCLUSIONS: Community-based LHA programs for outreach, education, and promotion of cancer screening and early detection, are ideal for addressing cancer health disparities in access and quality care. When community-based LHAs are appropriately recruited, trained, and located in communities, they provide unique opportunities to link, bridge, and facilitate quality cancer education, services, and research.

The men's health forum: an initiative to address health disparities in the community.

Racial/ethnic, socioeconomic, and gender disparities in health and access to and use of health care services currently exist. Health professionals are continually striving to reduce and eliminate health disparities within their own community. One such effort in the area of Tampa Bay, Florida was the creation of the African American Men's Health Forum, currently referred to as the Men's Health Forum. The African American Men's Health Forum was the result of the community's desire to reduce the gap in health outcomes for African American men. Later, it was recognized that the gap in health outcomes impacts other communities; therefore, it was broadened to include all men considered medically underserved (those who are uninsured, underinsured, or without a regular health care provider). The Men's Health Forum empowers men with the resources, knowledge, and information to effectively manage their health by providing health education and screenings to the community. This article provides an explanation of the key components that have contributed to the success of the Men's Health Forum, including challenges and lessons learned. It is intended that this information be replicated in other communities in an effort to eliminate health disparities.

Explaining and improving breast cancer information acquisition among African American women in the Deep South.

OBJECTIVES: A major challenge facing contemporary cancer educators is how to optimize the dissemination of breast cancer prevention and control information to African American women in the Deep South who are believed to be cancer free. The purpose of this research was to provide insight into the breast cancer information-acquisition experiences of African American women in Alabama and Mississippi and to make recommendations on ways to better reach members of this high-risk, underserved population. METHODS: Focus group methodology was used in a repeated, cross-sectional research design with 64 African American women, 35 years old or older who lived in one of four urban or rural counties in Alabama and Mississippi. RESULTS: Axial-coded themes emerged around sources of cancer information, patterns of information acquisition, characteristics of preferred sources, and characteristics of least-preferred sources. CONCLUSIONS: It is important to invest in lay health educators to optimize the dissemination of breast cancer information to African American women who are believed to be cancer free in the Deep South.

Understanding the psychosocial issues of African American couples surviving prostate cancer.

African Americans are disproportionately affected by prostate cancer, yet less is known about the most salient psychosocial dimensions of quality of life. The purpose of this study was to explore the perceptions of African American prostate cancer survivors and their spouses of psychosocial issues related to quality of life. Twelve African American couples were recruited from a National Cancer Institute Comprehensive Cancer Center registry and a state-based non-profit organization to participate in individual interviews. The study was theoretically based on Ferrell's Quality of Life Conceptual Model. Common themes emerged regarding the psychosocial needs of African American couples. These themes were categorized into behavioral, social, psychological, and spiritual domains. Divergent perspectives were identified between male prostate cancer survivors and their female spouses. This study delineated unmet needs and areas for future in-depth investigations into psychosocial issues. The differing perspectives between patients and their spouses highlight the need for couple-centered interventions.

Influence of scary beliefs about the Tuskegee Syphilis Study on willingness to participate in research.

OBJECTIVES: To assess whether scary/alarming beliefs about details on the Tuskegee Syphilis Study (TSS) are associated with willingness and/or fear to participate in biomedical research. METHODS: Scary beliefs about TSS were examined for 565 Black and White adults who had heard of the TSS. Multivariate analyses by race were used to measure association. RESULTS: No association between scary beliefs and willingness or fear to participate in research was found (P > 0.05). CONCLUSIONS: These findings provide additional evidence that awareness or detailed knowledge about the TSS does not appear today to be a major factor influencing Blacks' willingness to participate in research.

Belief in AIDS origin conspiracy theory and willingness to participate in biomedical research studies: findings in whites, blacks, and Hispanics in seven cities across two surveys.

PURPOSE: The purpose of this study was to determine whether a belief in the AIDS origin conspiracy theory is related to likelihood or fear of participation in research studies. METHODS: The Tuskegee Legacy Project Questionnaire was administered via random-digit-dialed telephone interview to black, white, and Hispanic participants in 4 cities in 1999 and 2000 (n = 1,133) and in 3 cities in 2003 (n = 1,162). RESULTS: In 1999, 27.8% of blacks, 23.6% of Hispanics, and 8% of whites (P ≤ .001) reported that it was "very or somewhat likely" that AIDS is "the result of a government plan to intentionally kill a certain group of people by genocide." In 2003, 34.1% of blacks, 21.9% of Hispanics, and 8.4% of whites (P ≤ .001) reported the same. CONCLUSIONS: Whereas blacks and Hispanics were more than 3 times more likely than whites to believe in this AIDS origin conspiracy theory, holding this belief was not associated with a decreased likelihood of participation in, or increased fear of participation in, biomedical research.

Self-reported willingness to have cancer screening and the effects of sociodemographic factors.

BACKGROUND: The relative effects of race/ethnicity and other sociodemographic factors, compared to those of attitudes and beliefs on willingness to have cancer screening, are not well understood. METHODS: We conducted telephone interviews with 1148 adults (22% Hispanic, 31% African American, and 46% white) [corrected] from 3 cities in mainland United States and Puerto Rico. Respondents reported their sociodemographic characteristics, attitudes about barriers and facilitators of cancer screening, and willingness to have cancer screening under 4 scenarios: when done in the community vs one's doctor's office, and whether or not one had symptoms. RESULTS: Racial/ethnic minority status, age, and lower income were frequently associated with increased willingness to have cancer screening, even after including attitudes and beliefs about screening. Having screening nearby was important for community screening, and anticipation of embarrassment from screening for when there were no cancer symptoms. Associations varied across 4 screening scenarios, with the fewest predictors for screening by one's doctor when there were symptoms. CONCLUSIONS: Sociodemographic characteristics not only were related to willingness to have cancer screenings in almost all cases, but were generally much stronger factors than attitudinal barriers and facilitators. Cancer screening campaigns should affect attitudinal change where possible, but should also recognize that targeting screening to specific population groups may be necessary.

Barbers against prostate cancer: a feasibility study for training barbers to deliver prostate cancer education in an urban African American community.

The goal of this pilot study was to assess the feasibility of training barbers to deliver a brief culturally and literacy appropriate prostate cancer educational intervention to urban African American men. Eight barbers received training to deliver a 2-month educational intervention in the barbershop and completed pre- and posttest training assessments. The training workshops led to a significant increase in mean prostate cancer knowledge scores among the barbers (60% before vs. 79% after; P < 0.05). The barbers also reported positively on the intervention in terms of satisfaction and relative ease of engaging clients. Training barbers to deliver a prostate cancer educational intervention is a feasible strategy for raising prostate cancer awareness of the disease among a priority population.

Identifying the Tuskegee Syphilis Study: implications of results from recall and recognition questions.

BACKGROUND: This analysis assessed whether Blacks, Whites and Puerto-Rican (PR) Hispanics differed in their ability to identify the Tuskegee Syphilis Study (TSS) via open-ended questions following lead-in recognition and recall questions. METHODS: The Tuskegee Legacy Project (TLP) Questionnaire was administered via a Random-Digit Dial (RDD) telephone survey to a stratified random sample of Black, White and PR Hispanic adults in three U.S. cities. RESULTS: The TLP Questionnaire was administered to 1,162 adults (356 African-Americans, 313 PR Hispanics, and 493 non-Hispanic Whites) in San Juan, PR, Baltimore, MD and New York City, NY. Recall question data revealed: 1) that 89% or more of Blacks, Whites, and PR Hispanics were not able to name or definitely identify the Tuskegee Syphilis Study by giving study attributes; and, 2) that Blacks were the most likely to provide an open-ended answer that identified the Tuskegee Syphilis Study as compared to Whites and PR Hispanics (11.5% vs 6.3% vs 2.9%, respectively) (p

Exploring the "legacy" of the Tuskegee Syphilis Study: a follow-up study from the Tuskegee Legacy Project.

The purpose of this follow-up 2003 3-City Tuskegee Legacy Project (TLP) Study was to validate or refute our prior findings from the 1999-2000 4 City TLP Study, which found no evidence to support the widely acknowledged "legacy" of the Tuskegee Syphilis Study (TSS), ie, that blacks are reluctant to participate in biomedical studies due to their knowledge of the TSS. The TLP Questionnaire was administered in this random-digit-dial telephone survey to a stratified random sample of 1162 black, white, and Puerto Rican Hispanic adults in 3 different US cities. The findings from this current 3-City TLP Study fail to support the widely acknowledged "legacy" of the TSS, as awareness of the TSS was not statistically associated with the willingness to participate in biomedical studies. These findings, being in complete agreement with our previous findings from our 1999-2000 4-City TLP, validate those prior findings.

A primer on quality indicators of distance education.

In the past decade, there has been an enormous growth of distance education courses and programs in higher education. The growth of distance education is particularly evident in the field of health education. However, the enormous potential of distance education is tempered by one overriding question: How does one ensure that distance education coursework and degrees are of high quality? To this end, the purpose of this study is twofold: to identify quality indicators of distance education and to provide implications of the identified quality indicators for health education researchers and practitioners. The results of the study reveal common benchmarks and quality indicators that all parties deem important in designing, implementing, and evaluating distance education courses and programs.