37323University of Arkansas for Medical Sciences Northwest, Fayetteville, USA.
Faith in Action Research and Resource Alliance (FARRA), Springdale, USA.
J Empir Res Hum Res Ethics. 2021 Jul;16(3):144-153. doi: 10.1177/15562646211005651. Epub 2021 Mar 29.
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.
太平洋岛民是美国人口增长第二快的群体;然而,太平洋岛民,特别是马绍尔群岛人,在健康研究中代表性不足。采用以社区为基础的参与式研究 (CBPR) 方法,让马绍尔群岛利益攸关方参与进来,并建立一个学术-社区研究合作关系,开展健康差距研究。我们的 CBPR 伙伴关系试点测试了一个多组件的同意过程,为参与者提供了控制其数据使用的选项。同意书使用简洁的平实语言来描述研究信息,包括参与者的要求、风险和个人健康信息保护,并提供英文和马绍尔语两种版本。这项研究表明,当提供多组件同意书时,绝大多数同意参与研究的参与者(89.6%)同意所有额外选项,只有五人(10.4%)对某些选项而不是所有选项表示同意。我们通过 CBPR 方法描述多组件同意的制定和实施,提供了一个社区参与的具体示例,可能对其他土著人群有参考意义。