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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.

SUBMITTER: De las Nueces D

PROVIDER: S-EPMC3418827 | biostudies-other | 2012 Jun

REPOSITORIES: biostudies-other

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A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups.

De las Nueces Denise D Hacker Karen K DiGirolamo Ann A Hicks LeRoi S LS

Health services research 20120221 3 Pt 2

<h4>Objective</h4>To examine the effectiveness of current community-based participatory research (CBPR) clinical trials involving racial and ethnic minorities.<h4>Data source</h4>All published peer-reviewed CBPR intervention articles in PubMed and CINAHL databases from January 2003 to May 2010.<h4>Study design</h4>We performed a systematic literature review.<h4>Data collection/extraction methods</h4>Data were extracted on each study's characteristics, community involvement in research, subject r ...[more]

PMID: 22353031

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Project description:BackgroundCertain racial/ethnic minority groups have a higher risk of developing dementia, yet studies have demonstrated that they often have limited knowledge and understanding of this disease. An increasing number of educational and advocacy programs have been developed to promote dementia knowledge. We aimed at assessing current evidence and quality regarding educational interventions for promoting dementia knowledge.MethodsWe searched for intervention studies published in English that focused on educational interventions for promoting dementia knowledge among racial/ethnic minority groups. We identified 25 relevant studies through PubMed, PsycINFO, CINAHL, and Scopus, using tailored search terms. We screened titles and abstracts, reviewed full texts, synthesized relevant evidence, and evaluated the studies' quality based on the Mixed Methods Appraisal Tool. Relevant intervention studies took place in communities, hospitals or clinics, and schools, and online.ResultsMost studies were conducted in the United States (n = 21), followed by the UK (n = 3). Over half of the studies included Asian/Pacific Islander groups (n = 14), followed by Black groups (n = 12) and Hispanic groups (n = 11). The intervention delivery mode varied across studies-from workshops hosted in a faith community to talk shows on YouTube. Target populations included middle-aged and older adults, caregivers and family members, health students and professionals, and elementary school students. Common content included symptoms and signs of dementia, protective and risk factors, and local resources. The assessment of study outcomes varied across studies. Improvement in dementia knowledge and attitudes towards dementia was reported in many studies. Among the included studies, intervention satisfaction was high. The overall quality of the interventions was low.ConclusionFormally evaluated educational interventions promoting dementia knowledge are at an early stage. Existing published interventions showed adequate acceptability and promise in promoting better understanding and awareness of dementia in minority groups. More well-designed randomized controlled trials are needed.

Project description:BackgroundThe prevention of oral health diseases is a key public health issue and a major challenge for racial and ethnic minority groups, who often face barriers in accessing dental care. Daily toothbrushing is an important self-care behavior necessary for sustaining good oral health, yet engagement in regular brushing remains a challenge. Identifying strategies to promote engagement in regular oral self-care behaviors among populations at risk of poor oral health is critical.ObjectiveThe formative research described here focused on creating messages for a digital oral self-care intervention targeting a racially and ethnically diverse population. Theoretically grounded strategies (reciprocity, reciprocity-by-proxy, and curiosity) were used to promote engagement in 3 aspects: oral self-care behaviors, an oral care smartphone app, and digital messages. A web-based participatory co-design approach was used to develop messages that are resource efficient, appealing, and novel; this approach involved dental experts, individuals from the general population, and individuals from the target population-dental patients from predominantly low-income racial and ethnic minority groups. Given that many individuals from racially and ethnically diverse populations face anonymity and confidentiality concerns when participating in research, we used an approach to message development that aimed to mitigate these concerns.MethodsMessages were initially developed with feedback from dental experts and Amazon Mechanical Turk workers. Dental patients were then recruited for 2 facilitator-mediated group webinar sessions held over Zoom (Zoom Video Communications; session 1: n=13; session 2: n=7), in which they provided both quantitative ratings and qualitative feedback on the messages. Participants interacted with the facilitator through Zoom polls and a chat window that was anonymous to other participants. Participants did not directly interact with each other, and the facilitator mediated sessions by verbally asking for message feedback and sharing key suggestions with the group for additional feedback. This approach plausibly enhanced participant anonymity and confidentiality during the sessions.ResultsParticipants rated messages highly in terms of liking (overall rating: mean 2.63, SD 0.58; reciprocity: mean 2.65, SD 0.52; reciprocity-by-proxy: mean 2.58, SD 0.53; curiosity involving interactive oral health questions and answers: mean 2.45, SD 0.69; curiosity involving tailored brushing feedback: mean 2.77, SD 0.48) on a scale ranging from 1 (do not like it) to 3 (like it). Qualitative feedback indicated that the participants preferred messages that were straightforward, enthusiastic, conversational, relatable, and authentic.ConclusionsThis formative research has the potential to guide the design of messages for future digital health behavioral interventions targeting individuals from diverse racial and ethnic populations. Insights emphasize the importance of identifying key stimuli and tasks that require engagement, gathering multiple perspectives during message development, and using new approaches for collecting both quantitative and qualitative data while mitigating anonymity and confidentiality concerns.

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Project description:IntroductionInternational policy recommends continuous, cost-effective monitoring of health data to enable health services to identify and respond to health inequities as experienced by different ethnic groups. However, there is a lack of routinely collected ethnicity data, particularly in primary care, and very little implementation research internationally to understand how ethnic identifiers are introduced, embedded and used in healthcare settings. This paper describes a protocol for a novel participatory health research project with the objective of building the evidence base on ethnic minority health in Ireland. Findings on the participatory appraisal of ethnic identifiers as an intervention to generate useful data about minority and majority ethnic groups will have relevance in other settings and countries.Methods and analysisThis multidisciplinary project is designed as a participatory health research study where all stakeholders, including ethnic minority communities, participate in co-design of the research protocol, project governance, collaborative data interpretation and disseminating findings. A national catalogue of all routinely collected health data repositories will be electronically searched for any repositories that contain information on ethnicity. A secondary quantitative analysis of a population-representative cohort study, Growing Up in Ireland, will be carried out to compare the health of ethnic minority and majority groups. A qualitative case study informed by normalisation process theory will be carried out at three primary care sites to monitor the implementation of an ethnic identifier and identify barriers and levers to implementation.Ethics and disseminationEthical approval for the qualitative case study has been granted by the Irish Council for General Practitioners (06/09/17). Permission to access data from Growing Up in Ireland has been granted by the Director General of the Central Statistics Office. Dissemination will be carried out at community events and academic conferences, in peer-reviewed journal publications, and through academic and healthcare provider networks.

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A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups.

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A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups.

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