Development and evaluation of a community-engaged research training program: Building capacity of Marshallese stakeholders and academic researchers to conduct health research
Abstract:Pacific Islanders are a growing, yet understudied population who suffer from high rates of chronic diseases such as obesity and diabetes. Given the historical trauma experienced by Pacific Islanders, community-based participatory research (CBPR) is an appropriate way to conduct research focused on reducing the health disparities observed in this population. This paper presents the process of engaging the Marshallese community to design, conduct, and evaluate a community-engaged research training program. The g… Show more
“…Cardiometabolic diseases and maternal health were identified as top priorities. To address the health disparities experienced by the Marshallese community, the CBPR partnership has conducted several research projects (McElfish et al, 2018a(McElfish et al, , 2018b(McElfish et al, , 2019a(McElfish et al, , 2019b(McElfish et al, , 2019c(McElfish et al, , 2019d(McElfish et al, , 2020 and used a multicomponent consent process that provides participants the option to control the use of their data while also allowing researchers to link different data sources across multiple studies.…”
Pacific Islanders are the second fastest-growing population in the United States; however, Pacific Islanders, and Marshallese specifically, are underrepresented in health research. A community-based participatory research (CBPR) approach was used to engage Marshallese stakeholders and build an academic-community research collaborative to conduct health disparities research. Our CBPR partnership pilot tested a multicomponent consent process that provides participants the option to control the use of their data. Consent forms used concise plain language to describe study information, including participant requirements, risks, and personal health information protections, and were available in both English and Marshallese. This study demonstrates that when provided a multicomponent consent, the vast majority of consenting study participants (89.6%) agreed to all additional options, and only five (10.4%) provided consent for some but not all options. Our description of the development and implementation of a multicomponent consent using a CBPR approach adds a specific example of community engagement and may be informative for other indigenous populations.
“…Cardiometabolic diseases and maternal health were identified as top priorities. To address the health disparities experienced by the Marshallese community, the CBPR partnership has conducted several research projects (McElfish et al, 2018a(McElfish et al, , 2018b(McElfish et al, , 2019a(McElfish et al, , 2019b(McElfish et al, , 2019c(McElfish et al, , 2019d(McElfish et al, , 2020 and used a multicomponent consent process that provides participants the option to control the use of their data while also allowing researchers to link different data sources across multiple studies.…”
Pacific Islanders are the second fastest-growing population in the United States; however, Pacific Islanders, and Marshallese specifically, are underrepresented in health research. A community-based participatory research (CBPR) approach was used to engage Marshallese stakeholders and build an academic-community research collaborative to conduct health disparities research. Our CBPR partnership pilot tested a multicomponent consent process that provides participants the option to control the use of their data. Consent forms used concise plain language to describe study information, including participant requirements, risks, and personal health information protections, and were available in both English and Marshallese. This study demonstrates that when provided a multicomponent consent, the vast majority of consenting study participants (89.6%) agreed to all additional options, and only five (10.4%) provided consent for some but not all options. Our description of the development and implementation of a multicomponent consent using a CBPR approach adds a specific example of community engagement and may be informative for other indigenous populations.
The purpose of this design and development case study is to provide an in-depth account of the needs analysis (through surveys and interviews), design, development and formative evaluation of the Citizen Science Cancer Curriculum (CSCC). The curriculum was developed as an online, self-paced educational program distributed as an Open Educational Resource using Creative Commons licensing. The instructional approach described in this design and development case study was informed by the Self-Determination Theory (SDT) framework. The case reflects a new frontier in the development of community stakeholder engagement models and describes how evidence-based instructional design practices and approaches (e.g., storytelling) can be used to support Citizen Scientists’ interests, learning and motivation to engage in cancer-related research. Results from quantitative and qualitative analyses indicate that the CSCC supported Citizen Scientists’ learning performance and motivation. More specifically, the use of storytelling as an instructional approach supported Citizen Scientists’ psychological needs, especially relatedness and competence, which translated into their behavioral intentions to contribute to cancer-related research. We share context-specific challenges and opportunities in working with Citizen Scientists as well as with cancer researchers and clinicians during the design and development of the curriculum.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.