Dataset Information

Community engagement in diverse populations for Alzheimer disease prevention trials.

ABSTRACT: The recruitment of asymptomatic volunteers has been identified as a critical factor that is delaying the development and validation of preventive therapies for Alzheimer disease (AD). Typical recruitment strategies involve the use of convenience samples or soliciting participation of older adults with a family history of AD from clinics and outreach efforts. However, high-risk groups, such as ethnic/racial minorities, are traditionally less likely to be recruited for AD prevention studies, thus limiting the ability to generalize findings for a significant proportion of the aging population. A community-engagement approach was used to create a registry of 2311 research-ready, healthy adult volunteers who reflect the ethnically diverse local community. Furthermore, the registry's actual commitment to research was examined, through demonstrated participation rates in a clinical study. The approach had varying levels of success in establishing a large, diverse pool of individuals who are interested in participating in pharmacological prevention trials and meet the criteria for primary prevention research trials designed to delay the onset of AD. Our efforts suggest that entry criteria for the clinical trials need to be carefully considered to be inclusive of African Americans, and that sustained effort is needed to engage African Americans in pharmacological prevention approaches.

SUBMITTER: Romero HR

PROVIDER: S-EPMC4139415 | biostudies-literature | 2014 Jul-Sep

REPOSITORIES: biostudies-literature

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Community engagement in diverse populations for Alzheimer disease prevention trials.

Romero Heather R HR Welsh-Bohmer Kathleen A KA Gwyther Lisa P LP Edmonds Henry L HL Plassman Brenda L BL Germain Cassandra M CM McCart Michelle M Hayden Kathleen M KM Pieper Carl C Roses Allen D AD

Alzheimer disease and associated disorders 20140701 3

The recruitment of asymptomatic volunteers has been identified as a critical factor that is delaying the development and validation of preventive therapies for Alzheimer disease (AD). Typical recruitment strategies involve the use of convenience samples or soliciting participation of older adults with a family history of AD from clinics and outreach efforts. However, high-risk groups, such as ethnic/racial minorities, are traditionally less likely to be recruited for AD prevention studies, thus ...[more]

PMID: 24614272

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Project description:Good Participatory Practice (GPP) guidelines support and direct community engagement practices in biomedical HIV prevention trials, however no standardized metrics define the implementation and evaluation of these practices. Collaboratively, the Community Program staff of the HIV Vaccine Trials Network (HVTN) and the HIV Prevention Trials Network (HPTN) created a metric to describe, monitor, and evaluate one component of GPP, recruitment practices, in two HIV monoclonal Antibody Mediated Prevention (AMP) clinical trials, HVTN 703/HPTN 081 and HVTN 704/HPTN 085. Through consultation with community representatives from each clinical research site (hereafter "site(s)"), who made up the study Community Working Groups, recruitment strategy descriptors were developed for both trials to characterize responses to "How did you hear about the AMP study?" The Community Working Groups also helped to define and establish time points that were selected to allow comparisons across sites. Data were collected by 43 of 46 clinical research sites from January 1, 2017 to February 28, 2018. All 43 sites used multiple recruitment strategies successfully, but strategies varied by region. Globally, referrals was the most efficient and effective recruitment strategy as evidenced by the screening: enrollment ratio of 2.2:1 in Africa, and 2.1:1 in the Americas/Switzerland. Print materials were also valuable globally (3:1 Africa, 4.2:1 Americas/Switzerland). In Africa, in-person outreach was also quite effective (2.3:1) and led to the most enrollments (748 of 1186, 63%). In the Americas/Switzerland, outreach was also effective (2.6:1), but internet use resulted in the most screens (1893 of 4275, 44%) and enrollments (677 of 1531, 44%), compared to 12 of 2887 (0.4%) and 2 of 1204 (0.1%) in Africa, respectively. Standardized metrics and data collection aid meaningful comparisons of optimal community engagement methods for trial enrollment. Internet strategies had better success in the Americas/Switzerland than in sub-Saharan African countries. Data are essential in outreach staff efforts to improve screening-to-enrollment ratios. Because the effectiveness of recruitment strategies varies by region, it is critical that clinical research sites tailor community engagement and recruitment strategies to their local environment, and that they are supported with resources enabling use of a range of approaches.

Project description:ObjectivesBroad international guidelines and studies in the context of individual clinical trials highlight the centrality of community stakeholder engagement in conducting ethically rigorous HIV prevention trials. We explored and identified challenges and facilitators for community stakeholder engagement in biomedical HIV prevention trials in diverse global settings. Our aim was to assess and deepen the empirical foundation for priorities included in the GPP guidelines and to highlight challenges in implementation that may merit further attention in subsequent GPP iterations.MethodsFrom 2008-2012 we conducted an embedded, multiple case study centered in Thailand, India, South Africa and Canada. We conducted in-depth interviews and focus groups with respondents from different trial-related subsystems: civil society organization representatives, community advocates, service providers, clinical trialists/researchers, former trial participants, and key HIV risk populations. Interviews/focus groups were recorded, and coded using thematic content analysis. After intra-case analyses, we conducted cross-case analysis to contrast and synthesize themes and sub-themes across cases. Lastly, we applied the case study findings to explore and assess UNAIDS/AVAC GPP guidelines and the GPP Blueprint for Stakeholder Engagement.ResultsAcross settings, we identified three cross-cutting themes as essential to community stakeholder engagement: trial literacy, including lexicon challenges and misconceptions that imperil sound communication; mistrust due to historical exploitation; and participatory processes: engaging early; considering the breadth of "community"; and, developing appropriate stakeholder roles. Site-specific challenges arose in resource-limited settings and settings where trials were halted.ConclusionsThis multiple case study revealed common themes underlying community stakeholder engagement across four country settings that largely mirror GPP goals and the GPP Blueprint, as well as highlighting challenges in the implementation of important guidelines. GPP guidance documents could be strengthened through greater focus on: identifying and addressing the community-specific roots of mistrust and its impact on trial literacy activities; achieving and evaluating representativeness in community stakeholder groups; and addressing the impact of power and funding streams on meaningful engagement and independent decision-making.

Project description:IntroductionGlobal migration and immigration are increasing, and migrants and immigrants (im/migrants) have specific health needs and healthcare experiences. Yet, im/migrant involvement in immigration and health research in Canada is inconsistent. Heretofore, involvement has primarily been in research planning, data collection and analysis, with little community involvement during knowledge exchange or through training and colearning opportunities. Community engagement has been especially uncommon in mixed-method and quantitative research in Canada.ObjectiveThis article describes lessons learnt from the Evaluating Inequities in Refugee & Immigrants' Health Access (IRIS) project from 2018 to 2023, an ongoing mixed-method, community-based research project in British Columbia, Canada. Specifically, we share our core community engagement project structures, Commitments to Community and our Community Engagement Backbone, both collaboratively developed with im/migrant community memebers.ParticipantsPeople with varied experiences of im/migration and connections to multiple, specific im/migrant communities participate in the project as participants, community researchers, community advisory board members, faculty members and students. Core research activities are supported in English, Farsi, Spanish and Tigrinya. We engage community members throughout the research process, from identifying research topics to knowledge exchange.ConclusionWe found that these structures offer an accessible visual representation of the project's commitments to community engagement, and the ways these commitments are demonstrated through values and action. Our training opportunities, colearning activities and knowledge exchange efforts also confirmed the accuracy of interpretation, prompted additional analysis to clarify or add depth to findings, and helped us identify additional research topics. We hope these learnings can be used to expand engagement with diverse im/migrant communities in health and immigration research.

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Community engagement in diverse populations for Alzheimer disease prevention trials.

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Community engagement in diverse populations for Alzheimer disease prevention trials.

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