A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups.
ABSTRACT: OBJECTIVE: To examine the effectiveness of current community-based participatory research (CBPR) clinical trials involving racial and ethnic minorities. DATA SOURCE: All published peer-reviewed CBPR intervention articles in PubMed and CINAHL databases from January 2003 to May 2010. STUDY DESIGN: We performed a systematic literature review. DATA COLLECTION/EXTRACTION METHODS: Data were extracted on each study's characteristics, community involvement in research, subject recruitment and retention, and intervention effects. PRINCIPLE FINDINGS: We found 19 articles meeting inclusion criteria. Of these, 14 were published from 2007 to 2010. Articles described some measures of community participation in research with great variability. Although CBPR trials examined a wide range of behavioral and clinical outcomes, such trials had very high success rates in recruiting and retaining minority participants and achieving significant intervention effects. CONCLUSIONS: Significant publication gaps remain between CBPR and other interventional research methods. CBPR may be effective in increasing participation of racial and ethnic minority subjects in research and may be a powerful tool in testing the generalizability of effective interventions among these populations. CBPR holds promise as an approach that may contribute greatly to the study of health care delivery to disadvantaged populations.
Project description:Contextually and culturally congruent interventions are urgently needed to reduce racial, ethnic, and socioeconomic inequities in physical activity and cardiovascular disease.To examine a community-based participatory research (CBPR) process that incorporated storytelling into a physical activity intervention, and consider implications for reducing health inequities.We used a CBPR process to incorporate storytelling in an existing walking group intervention. Stories conveyed social support and problem-solving intervention themes designed to maintain increases in physical activity over time, and were adapted to the walking group context, group dynamics, challenges, and traditions.After describing of the CBPR process used to adapt stories to walking group sites, we discuss challenges and lessons learned regarding the adaptation and implementation of stories to convey key intervention themes.A CBPR approach to incorporating storytelling to convey intervention themes offers an innovative and flexible strategy to promote health toward the elimination of health inequities.
Project description:The United States continues to become more racially and ethnically diverse, and racial/ethnic minority communities encounter sociocultural barriers to quality health care, including implicit racial/ethnic bias among health care providers. In response, health care organizations are developing and implementing cultural competency curricula. Using a community-based participatory research (CBPR) approach, we developed and evaluated a cultural competency training program to improve the delivery of culturally appropriate care in Marshallese and Hispanic communities.We used a mixed-methods evaluation approach based on the Kirkpatrick model of training evaluation. We collected quantitative evaluation data immediately after each training session (March 19, 2015-November 30, 2016) and qualitative data about implementation at 2 points: immediately after each session and 6 months after training. Individuals and organizational units provided qualitative data.We delivered 1,250 units of in-person training at 25 organizations. Participants reported high levels of changes in knowledge (91.2%), competence (86.6%), and performance (87.2%) as a result of the cultural competency training. Organizations reported making policy and environmental changes.Initial outcomes demonstrate the value of developing and implementing cultural competency training programs using a CBPR approach. Additional research is needed to determine the effect on long-term patient outcomes.
Project description:We conducted a 2-phase systematic review of the literature to examine the nature and outcomes of health research using a community-based participatory research (CBPR) approach with AI communities to assess both the value and the impact of CBPR, identify gaps in knowledge, and guide recommendations for AI research agendas. Using PRISMA guidelines, we searched the peer-reviewed literature published from 1995 to 2016 and identified and reviewed 42 unique intervention studies. We identified and catalogued key study characteristics, and using the Reliability-Tested Guidelines for Assessing Participatory Research Projects, we quantified adherence to participatory research principles across its four domains. Finally, we examined any association between community participation score and health outcomes. The majority of studies (76.7%) used an observational study design with diabetes, cancer, substance abuse, and tobacco being the most common topics. Half of the articles reported an increase in knowledge as the primary outcome. Our findings suggest that a CBPR orientation yields improved community outcomes. However, we could not conclude that community participation was directly associated with an improvement in health outcomes.
Project description:BACKGROUND:Racial/ethnic minority populations in the United States are consistently underrepresented in genetic research. Large-scale public participation is required to ensure discoveries from precision medicine research are applicable to everyone. To evaluate views toward and facilitators of participation among minority populations in the United States, we conducted a systematic review of literature. METHODS:Six databases were searched for articles published from 2005 to 2018 assessing minority populations' views and/or willingness to participate in genetic research. A thematic framework was applied to extracted data to synthesize findings, and the Socio-Ecological Model was used to evaluate papers. RESULTS:Review of 2,229 titles and abstracts identified 27 papers (n = 8 qualitative, n = 19 quantitative). Themes included knowledge of genetics, engagement in research, facilitators and barriers to participation, and cultural considerations. Understanding of genetics was low, yet the majority of participants were willing to participate in genetic research among all populations included in the literature (range: 57%-97%). Recommendations for research included utilizing community-based participatory approaches, evaluating participants' informational needs, incentivizing participation, and providing direct benefits (e.g., genetic test results). CONCLUSION:Results could influence future study designs that incorporate all levels of the Socio-Ecological Model and better meet the needs of underrepresented groups, thereby ensuring precision medicine research findings are applicable to all.
Project description:Racial/ethnic minority groups remain underrepresented in clinical trials. Many strategies to increase minority recruitment focus on minority communities and emphasize common diseases such as hypertension. Scant literature focuses on minority recruitment to trials of less common conditions, often conducted in specialty clinics and dependent on physician referrals. We identified trust/mistrust of specialist physician investigators and institutions conducting medical research and consequent participant reluctance to participate in clinical trials as key-shared barriers across racial/ethnic groups. We developed a trust-based continuous quality improvement intervention to build trust between specialist physician investigators and community minority-serving physicians and ultimately potential trial participants. To avoid the inherent biases of non-randomized studies, we evaluated the intervention in the national Randomized Recruitment Intervention Trial (RECRUIT). This report presents the design of RECRUIT. Specialty clinic follow-up continues through April 2017.We hypothesized that specialist physician investigators and coordinators trained in the trust-based continuous quality improvement intervention would enroll a greater proportion of minority participants in their specialty clinics than specialist physician investigators in control specialty clinics. Specialty clinic was the unit of randomization. Using continuous quality improvement, the specialist physician investigators and coordinators tailored recruitment approaches to their specialty clinic characteristics and populations. Primary analyses were adjusted for clustering by specialty clinic within parent trial and matching covariates.RECRUIT was implemented in four multi-site clinical trials (parent trials) supported by three National Institutes of Health institutes and included 50 associated specialty clinics from these parent trials. Using current data, we have 88% power or greater to detect a 0.15 or greater difference from the currently observed control proportion adjusting for clustering. We detected no differences in baseline matching criteria between intervention and control specialty clinics (all p values?>?0.17).RECRUIT was the first multi-site randomized control trial to examine the effectiveness of a trust-based continuous quality improvement intervention to increase minority recruitment into clinical trials. RECRUIT's innovations included its focus on building trust between specialist investigators and minority-serving physicians, the use of continuous quality improvement to tailor the intervention to each specialty clinic's specific racial/ethnic populations and barriers to minority recruitment, and the use of specialty clinics from more than one parent multi-site trial to increase generalizability. The effectiveness of the RECRUIT intervention will be determined after the completion of trial data collection and planned analyses.
Project description:Ethnic/racial minorities are under-represented in blood donor populations in most developed countries. This is of particular concern where minorities differ from a country's majority population in terms of blood or tissue typing, especially where type matching is required for effective management of rare disorders such as sickle-cell disease that require multiple transfusions. This systematic review assessed the effectiveness of interventions to increase blood donation among ethnic/racial minority populations in developed countries. We searched MEDLINE, EMBASE, CINAHL, and ProQuest on 20 March 2017 with no date restrictions and supplemented this with searches on Google Scholar, blood collection agency websites, reference lists of included studies, and a forward search of citations of included studies. We included intervention studies designed to increase recruitment and/or retention of adult, ethnic/racial minority blood donors in developed countries. The review identified eight studies reported in nine publications. Six were conducted in the USA with African Americans. Four studies reported on multifaceted, community-based interventions; three reported on one-off information and educational video interventions, presented face-to-face, or delivered via post or e-mail. The level of evidence for efficacy was low, and the majority of studies were assessed as having some risk of bias related to one or more methodological issues. All eight studies reported positive outcomes in blood donation and/or intention to donate. Seven trials found that the intervention increased presentation for donation, and three found an increase in the percentage of new donors from the ethnic minority targeted. The review findings demonstrate that it is possible to design and implement effective interventions to motivate individuals from ethnic/racial minority groups to donate blood. One-off interventions may be as effective as multifaceted, community-based interventions. There was insufficient evidence to recommend particular interventions, and future research should empirically assess alternative interventions using robust study designs.
Project description:Minority stress theory has widespread research support in explaining health disparities experienced by sexual and gender minorities. However, less is known about how minority stress impacts multiply marginalized groups, such as lesbian, gay, bisexual, and transgender people of color (LGBT POC). Also, although research has documented resilience in the face of minority stress at the individual level, research is needed that examines macro-level processes such as community resilience (Meyer, 2015). In the current study, we integrate minority stress theory and intersectionality theory to examine multiple minority stress (i.e., racial/ethnic stigma in LGBT spaces and LGBT stigma in one's neighborhood) and community resilience (i.e., connection to LGBT community) among sexual minority men of different racial/ethnic groups who use a geosocial networking application for meeting sexual partners. Results showed that Black sexual minority men reported the highest levels of racial/ethnic stigma in LGBT spaces and White sexual minority men reported the lowest levels, with Asian and Hispanic/Latino men falling in between. Consistent with minority stress theory, racial/ethnic stigma in LGBT spaces and LGBT stigma in one's neighborhood were associated with greater stress for sexual minority men of all racial/ethnic groups. However, connection to LGBT community played more central role in mediating the relationship between stigma and stress for White than POC sexual minority men. Results suggest that minority stress and community resilience processes may differ for White and POC sexual minority men. Potential processes driving these differences and implications for minority stress theory are discussed.
Project description:Obesity remains a persistent public health and health disparity concern in the United States. Eliminating health disparities, particularly among racial/ethnic minority groups, is a major health priority in the US. The primary aim of this review was to evaluate representation of racial/ethnic sub-group members in behavioral weight loss interventions conducted among adults in the United States. The secondary aims were to assess recruitment and study design approaches to include racial/ethnic groups and the extent of racial/ethnic sub-group analyses conducted in these studies. PubMed, PsycInfo, Medline, and CINAHL were searched for behavioral weight loss intervention trials conducted in 2009-2015 using keywords: weight, loss, overweight, obese, intervention and trial. Most of the 94 studies included a majority of White participants compared to any other racial/ethnic group. Across the included studies, 58.9% of participants were White, 18.2% were African American, 8.7% were Hispanic/Latino, 5.0% were Asian and 1.0% were Native Americans. An additional 8.2% were categorized as "Other". Nine of the 94 studies exclusively included minority samples. Lack of adequate representation of racial and ethnic minority populations in behavioral trials limits the generalizability and potential public health impact of these interventions to groups that might most benefit from weight loss. Given racial/ethnic disparities in obesity rates and the burden of obesity and obesity-related diseases among minority groups in the United States, greater inclusion in weight loss intervention studies is warranted.
Project description:Introduction: Innovative methods to increase awareness about clinical trials and address barriers associated with low participation among racial/ethnic minorities are desperately needed. African Americans comprise 5% of all clinical trial participants, and Hispanics make up 1%. Use of multimedia educational material has shown promise as an effective strategy to increase minority clinical trial enrollment. However, this approach has not been broadly implemented. We tested the effect of a video educational program on clinical trial knowledge and enrollment in a sample of oncology outpatients. Methods: A randomized controlled trial was conducted with 63 oncology patients without previous history of clinical trial participation. Participants were randomly assigned to the intervention, to watch a clinical trial educational video in the office, or to the control group which did not receive in-office education. The Clinical Trial Knowledge survey was administered before the intervention and 1 week after the intervention. Participation in clinical trials was assessed 1-year post study participation. Results for white participants and ethnic minorities were compared. Ethnicity was self-reported through the electronic health record and confirmed by self-reporting on questionnaire. Results: Sixty-three participants were recruited in this study. At 1-year follow-up, 3 participants enrolled in clinical trials in the study group which had received office-based video intervention and 2 participants enrolled in the control group (Z = 0.39, p = 0.69). These results were not statistically significant. Impact of the intervention by ethnicity could not be assessed due to low total clinical trial enrollment. The video intervention did not change knowledge, attitudes, or barriers as measured by the Clinical Trial Knowledge Survey. Minority participants did report significantly more negative beliefs and barriers to participation than white participants. Conclusions: Increasing awareness and knowledge about clinical trials in underrepresented communities is an important step to providing opportunities for participation. Future studies should focus on how to address the negative expectations of clinical trials and the greater information needs in minority populations. Tailored or personalized messaging may address negative perceptions of clinical trial participation.
Project description:BACKGROUND:Mobile health (mHealth) interventions are promising avenues to promote cardiovascular (CV) health among African-Americans (AAs) and culturally tailored technology-based interventions are emerging for this population. OBJECTIVE:The objectives of this study were to use a community-based participatory research (CBPR) approach to recruit AAs into a pilot intervention study of an innovative mHealth CV health promotion program and to characterize technology use patterns and eHealth literacy (EHL). METHODS:Community partners from five predominately AA churches in southeast Minnesota collaborated with our academic institution to recruit AA congregants into the pilot study. Field notes as well as communications between the study team and community partners were used to design the recruitment strategy and its implementation with a goal of enrolling 50 participants. At its core, the recruitment strategy included community kickoff events to detail the state-of-the-art nature of the mHealth intervention components, the utility of CV health assessments (physical examination, laboratory studies and surveys) and the participants' role in advancing our understanding of the efficacy of mHealth interventions among racial/ethnic minority groups. Detailed recruitment data were documented throughout the study. A self-administered, electronic survey measured sociodemographics, technology use and EHL (eHEALS scale). RESULTS:A total of 50 participants (70% women) from five AA churches were recruited over a one-month period. The majority (>90%) of participants reported using some form of mobile technology with all utilizing these technologies within their homes. Greater than half (60% [30/50]) reported being "very comfortable" with mobile technologies. Overall, participants had high EHL (84.8% [39/46] with eHEALS score ≥26) with no differences by sex. CONCLUSIONS:This study illustrates the feasibility and success of a CBPR approach in recruiting AAs into mHealth intervention research and contributes to the growing body of evidence that AAs have high EHL, are high-users of mobile technologies, and thus are likely to be receptive to mHealth interventions.