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: This faith-based structural intervention using a CBPR framework showed small but significant increases in self-reported leisure-time MVPA and has potential for broad-based dissemination and reach.
114 citations
TL;DR: This study examined racial/ethnic differences among patients in clinical trial (CT) enrollment, refusal rates, ineligibility, and desire to participate in research within the National Cancer Institute's Community Cancer Centers Program (NCCCP) Clinical Trial Screening and Accrual Log.
Abstract: BACKGROUND
This study examined racial/ethnic differences among patients in clinical trial (CT) enrollment, refusal rates, ineligibility, and desire to participate in research within the National Cancer Institute's Community Cancer Centers Program (NCCCP) Clinical Trial Screening and Accrual Log.
METHODS
Data from 4509 log entries were evaluated in this study. Four logistic regression models were run using physical/medical conditions, enrollment into a CT, patient eligible but declined a CT, and no desire to participate in research as dependent variables.
RESULTS
Age ≥ 65 years (OR = 1.51, 95% CI = 1.28-1.79), males (OR = 2.28, 95% CI = 1.92-2.71), and non-Hispanic black race (OR = 1.53, 95% CI = 1.2-1.96) were significantly associated with more physical/medical conditions. Age ≥ 65 years was significantly associated with lower CT enrollment (OR = 0.83, 95% CI = 0.7-0.98). Males (OR = 0.78, 95% CI = 0.65-0.94) and a higher grade level score for consent form readability (OR = 0.9, 95% CI = 0.83-0.97) were significantly associated with lower refusal rates. Consent page length ≥ 20 was significantly associated with lower odds of “no desire to participate in research” among CT decliners (OR = 0.75, 95% CI = 0.58-0.98).
CONCLUSIONS
There were no racial/ethnic differences in CT enrollment, refusal rates, or “no desire to participate in research” as the reason given for CT refusal. Higher odds of physical/medical conditions were associated with older age, males, and non-Hispanic blacks. Better management of physical/medical conditions before and during treatment may increase the pool of eligible patients for CTs. Future work should examine the role of comorbidities, sex, age, and consent form characteristics on CT participation. Cancer 2014;120:877–884. © 2013 American Cancer Society.
99 citations
TL;DR: A church-based intervention delivered by an African American health educator is a promising strategy for promoting informed decision making among African American men on prostate cancer screening and self-efficacy.
Abstract: Objectives This feasibility study developed and pilot tested an intervention to: (1) increase knowledge about prostate cancer screening; and (2) promote self-efficacy to participate in the informed decision-making process. Setting African American men are a priority audience for prostate cancer screening interventions to promote informed decision making, and faith-based settings have been shown to be an effective venue to reach this population. Therefore we used predominantly African American churches to develop and test our intervention. Participants Participants (N = 73) were recruited, and the intervention was administered by an African American health educator. Intervention We developed and pretested a prostate cancer screening informed decision-making intervention based on the Ottawa Decision Support Framework and the health belief model. The intervention included a tool called the "road map," which depicts the potential consequences of a decision to undergo or forgo screening. A quasiexperi-mental design was used to test the intervention. Main Outcome Measures The main outcome measures were change in knowledge and self-efficacy post intervention. Results Prostate cancer knowledge (p Conclusions A church-based intervention delivered by an African American health educator is a promising strategy for promoting informed decision making among African American men.
84 citations
TL;DR: YBH expands the roles of adult faith leaders, particularly pastors' spouses, to include health education as they implement the intervention in their congregations and communities.
Abstract: African American faith-based institutions are not necessarily equipped to balance their moral and spiritual missions and interpretation of religious doctrine with complex health issues such as human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS). YOUR Blessed Health (YBH) is a faith-based, six-month pilot project designed to increase the capacity of faith-based institutions and faith leaders to address HIV/AIDS and sexually transmitted infections (STIs) in 11- to 19-year-old African Americans. In addition to increasing the knowledge and skills of young people, the intervention seeks to change churches' norms to provide more open settings where young people can talk with faith leaders about sex, relationships, STIs, and HIV/AIDS. YBH expands the roles of adult faith leaders, particularly pastors' spouses, to include health education as they implement the intervention in their congregations and communities. The intervention includes a flexible menu of activities for faith leaders to select from according to their institutional beliefs, doctrines, and culture.
67 citations
TL;DR: Overall, African Americans were more likely than members of other racial/ethnic groups to be interested in studies requiring blood samples, genetic samples, or medical records, and staying overnight in a hospital even if it required blood samples or genetic testing.
Abstract: Objectives. We used results generated from the first study of the National Institutes of Health Sentinel Network to understand health concerns and perceptions of research among underrepresented groups such as women, the elderly, racial/ethnic groups, and rural populations.Methods. Investigators at 5 Sentinel Network sites and 2 community-focused national organizations developed a common assessment tool used by community health workers to assess research perceptions, health concerns, and conditions.Results. Among 5979 individuals assessed, the top 5 health concerns were hypertension, diabetes, cancer, weight, and heart problems; hypertension was the most common self-reported condition. Levels of interest in research participation ranged from 70.1% among those in the “other” racial/ethnic category to 91.0% among African Americans. Overall, African Americans were more likely than members of other racial/ethnic groups to be interested in studies requiring blood samples (82.6%), genetic samples (76.9%), or med...
67 citations