Outcomes from the Body & Soul Clinical Trials Project: A university-church partnership to improve African American enrollment in a clinical trial registry
TL;DR: A culturally tailored education program about CTs can increase enrollment of African Americans in a university-based clinical trials registry and improve minority CT enrollment over time.
About: This article is published in Patient Education and Counseling.The article was published on 2015-02-01 and is currently open access. It has received 19 citations till now.
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TL;DR: In this article, the authors provide an update since a systematic review in 2012, on the current status of the empirical research, with a particular focus on the elements of CBPR methods used to improve the rate of accrual of members of racial and ethnic minority communities for clinical trials.
Abstract: There has not been a significant improvement in the rate of clinical trial accrual in more than 20 years. Worse, the challenge of inadequate representation among racial and ethnic minorities also persists, deepening disparities in health. Community-Based Participatory Research (CBPR) is a participatory communication method that centers on effective dialogue between researchers and community stakeholders with the goal of creating an equitable partnership for health and social change. The objective of the current study was to provide an update since a systematic review in 2012, on the current status of the empirical research, with a particular focus on the elements of CBPR methods used to improve the rate of accrual of members of racial and ethnic minority communities for clinical trials. Our systematic review found a large increase in the number of CBPR related studies and studies related to racial and ethnic representation in research. More than 85% of studies employing CBPR methods saw statistically positive outcomes. Specifically, the elements of CBPR that are associated with these positive outcomes include community partner participation in (1) a study advisory committee, (2) data collection, (3) the development of interventions, and (4) participant recruitment. However, the results of our study indicate that researchers need to be more transparent about the extent of community participation as well as more thoroughly and accurately describe the nature of the partnership with members of minority communities in order to build upon the scientific literature on community-engaged methods.
31 citations
TL;DR: Results indicate that African-American and Hispanic-American participants have more negative attitudes about clinical trials, more distrust toward doctors, more interest in complementary and alternative medicine, and less willingness to participate in clinical trials than white/non-Hispanics, although specific factors affecting willingness to participation vary.
Abstract: African-Americans and Hispanic-Americans are disproportionately affected by cancer, yet underrepresented in cancer clinical trials. Because of this, it is important to understand how attitudes and beliefs about clinical trials vary by ethnicity. A national, random sample of 860 adults was given an online survey about attitudes toward clinical trials. We examined willingness to participate in clinical trials, attitudes toward clinical trials, trust in doctors, attitudes toward alternative and complementary medicine, and preferred information channels. Results indicate that African-American and Hispanic-American participants have more negative attitudes about clinical trials, more distrust toward doctors, more interest in complementary and alternative medicine, and less willingness to participate in clinical trials than white/non-Hispanics, although specific factors affecting willingness to participate vary. The channels people turn to for information on clinical trials also varied by ethnicity. These results help explain the ethnic disparities in cancer clinical trial enrollment by highlighting some potential underlying causes and drawing attention to areas of importance to these groups.
30 citations
TL;DR: This study examined factors associated with an invitation to participate in biomedical research, intent to participateIn biomedical research in the future, and participation in biomedicalResearch and biospecimen donation among a diverse, multilingual, community‐based sample across 3 distinct geographic areas.
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.
27 citations
Cites background from "Outcomes from the Body & Soul Clini..."
...The diversity of the research participants in the current study, and the increased likelihood of participation in biomedical research among underrepresented racial and ethnic groups, may be due in part to each site’s collaborations with local, well-established, and long-standing community partners and our ongoing outreach, engagement, and research programs.(13,34-36) The results of the current study also highlight opportunities for NCI-designated cancer centers to build on and leverage community and institutional relationships to better understand and enhance health communication and behavior around biomedical research participation....
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01 Sep 2021
TL;DR: The strengths and weakness of culturally tailored interventions for ethnic minorities’ care in the United States are identified and recently published studies are reviewed to improve understanding of these interventions for future research and practice.
Abstract: Aim This scoping review identifies strengths and weakness of culturally tailored interventions for ethnic minorities' care in the United States. It reviews recently published studies to improve understanding of these interventions for future research and practice. Design Scoping review. Methods By searching five electronic databases-CINAHL, PubMed, Ovid, Scopus and Web of Science, this review located 58 empirical studies published between 2015-2019. This review was guided by the PRISMA statements. Results The review identified four weaknesses and five strengths of culturally tailored interventions. Weaknesses included unclear guidelines, low attention and retention rates, failure to measure processes and inadequate training for healthcare providers. The intervention strengths were culturally respectful and patient-centred care, healthy lifestyle promotion, increased family and community supports, technology use for efficient and timely care and increased knowledge of disease by participants.
26 citations
Cites background from "Outcomes from the Body & Soul Clini..."
...…301) • “Additionally, there was not an equal dose of CT (clinical trial) educational messages for the comparison churches, which limits internal validity” (Langford et al., 2015, p. 254) (Continues) Main theme Subtheme Relevant study quotation Inadequate training for healthcare providers •…...
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...Retaining participants for the entirety of an intervention is imperative to ensure research is valid and reliable and to gain adequate power of sample (Langford et al., 2015)....
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...Langford et al. (2015) reported that they could not conduct the study with equal dose of usual care to the control group and observed that this threatened the study's internal validity....
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...While we had few challenges recruiting participants into the study, at one year follow up, we were able to obtain follow up questionnaires on 575 participants out of 745 (77%)” (Langford et al., 2015, p. 254) • “Our average attendance was 7.4/12 or 61.6%, with a majority (55.5...
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TL;DR: Data from two cycles of the National Cancer Institute's Health Information National Trends Survey collected in 2015 and 2017 were merged and analyzed and found that those higher in information seeking confidence were more likely to report high trust across all models.
Abstract: Public trust in traditional sources of health information is essential for public health agencies and organizations to perform necessary public health functions. Little research has examined levels and predictors of trust in government health agencies and national health organizations. Additionally, few studies have simultaneously analyzed trust in multiple health topics. The major aim of this study was to compare levels and factors associated with trust in national health sources across three health topics: information about tobacco, electronic cigarettes, and general health. Data from two cycles of the National Cancer Institute's Health Information National Trends Survey collected in 2015 and 2017 were merged and analyzed for this study (n = 5,474). A series of weighted multivariable logistic regression models calculated odds of high trust in government health agencies and health organizations for each health topic. More respondents reported high trust in health organizations than for government health agencies across all topics. More participants reported high trust in these sources tobacco information, as compared to general health or e-cigarette information. Logistic models found that those higher in information seeking confidence were more likely to report high trust across all models. Other demographic variables were inconsistent predictors of trust across topics. This study highlights inconsistent sociodemographic predictors of trust across multiple health topics and national health sources. Researchers, practitioners, and policymakers should consider the unique context of specific health topics in health promotion campaigns, partner with existing community-based organizations, and encourage and enable health information seeking.
22 citations
References
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TL;DR: The results suggest that research-based interventions, delivered collaboratively by community volunteers and a health-related voluntary agency, can be effectively implemented under real-world conditions.
318 citations
TL;DR: ResearchMatch has proven successful in connecting volunteers with researchers, and the authors are currently evaluating regulatory and workflow options to open access to researchers at non-CTSA institutions.
Abstract: The authors designed ResearchMatch, a disease-neutral, Web-based recruitment registry to help match individuals who wish to participate in clinical research studies with researchers actively searching for volunteers throughout the United States. In this article, they describe ResearchMatch's stakeholders, workflow model, technical infrastructure, and, for the registry's first 19 months of operation, utilization metrics. Having launched volunteer registration tools in November 2009 and researcher registration tools in March 2010, ResearchMatch had, as of June 2011, registered 15,871 volunteer participants from all 50 states. The registry was created as a collaborative project for institutions in the Clinical and Translational Science Awards (CTSA) consortium. Also as of June 2011, a total of 751 researchers from 61 participating CTSA institutions had registered to use the tool to recruit participants into 540 active studies and trials. ResearchMatch has proven successful in connecting volunteers with researchers, and the authors are currently evaluating regulatory and workflow options to open access to researchers at non-CTSA institutions.
221 citations
TL;DR: This represents one of the first controlled field trials to employ MI to address diet and PA, and one the first studies to test the effectiveness of a self-help diet andPA intervention tailored for an African-American church population.
Abstract: African-Americans (AAs) are significantly less likely to be physically active than other Americans, and, like all Americans, they consume fewer than the recommended five fruit and vegetable (F & V) servings per day. This study, titled Healthy Body/Healthy Spirit, has two primary aims: (1) to test the effectiveness of a culturally tailored self-help dietary (focusing on F & V intake) and physical activity (PA) intervention compared to standard health education materials, and (2) to test the effectiveness of using Motivational Interviewing (MI), delivered by telephone, to modify PA and dietary habits. The study is a randomized effectiveness trial with three experimental conditions. Group 1 (comparison) will receive standard (existing commercial) nutrition and PA intervention materials, Group 2 (TX1) will receive a culturally tailored self-help nutrition and PA intervention of similar intensity as Group 1, and Group 3 (TX2) will receive the same intervention as Group 2, plus four telephone counseling calls based on MI. Participants will be AA adults recruited through local black churches. Despite the extensive use of MI to modify addictive behaviors, this represents one of the first controlled field trials to employ MI to address diet and PA. Secondly, this is one of the first studies to test the effectiveness of a self
199 citations
TL;DR: Existing research underscores the importance of social support from family and friends, cultural appropriateness and sensitivity from physicians and in the design of the CCT, and enhanced education among African Americans in decision-making processes to enhance recruitment efforts and improve cancer treatment outcomes.
151 citations
TL;DR: The recruitment and intervention methods of the Eat for Life study appear promising, and the telephone intervention based on motivational interviewing is potentially useful for delivering dietary counseling.
Abstract: Background. Eat for Life, a multicomponent intervention to increase fruit and vegetable (F & V) consumption among African Americans, is delivered through African American churches. Methods. Fourteen churches were randomly assigned to one of three treatment conditions: 1) comparison; 2) culturally-sensitive multicomponent intervention with one phone call; and 3) culturally-sensitive multicomponent intervention with four phone calls. The intervention included an 18-minute video, a project cookbook, printed health education materials, and several "cues" imprinted with the project logo and a 5 A Day message. A key element of the telephone intervention was the use of motivational interviewing, a counseling technique originally devel-oped for addictive behaviors. Major outcomes for the trial included total F & V intake, assessed by food-frequency questionnaires (FFQs) and 24-hour recalls, and serum carotenoids. Psychosocial variables assessed included outcome expectations, barriers to F & V intake, preference for meat meals, neophobia, social support to eat more F & V, self-efficacy to eat more F & V, and nutrition knowledge. Results. Baseline mean F & V intakes across the three FFQs ranged from 3.45 to 4.28 servings per day. Intake based on a single 24-hour recall was 3.0 servings. Variables positively correlated with F & V intake included self-efficacy, outcome expectations, and a belief that F & V contain vitamins. Factors negatively correlated with intake include perceived barriers, meat preference, neophobia, and high-fat cooking practices. The completion rate for the first telephone counseling call was 90%. Completion rates for the remaining three calls ranged from 79% to 86%. Conclusion. The recruitment and intervention methods of the Eat for Life study appear promising. The telephone intervention based on motivational interviewing is potentially useful for delivering dietary counseling.
129 citations