Tivaivai研究框架在使用新西兰综合数据基础设施的太平洋定量健康研究项目中的应用

J. Kokaua, Seini Jensen, T. Ruhe, Justine Camp, Wilmason Jensen, Debbie Sorensen, Albany W Lucas, R. Richards
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引用次数: 10

摘要

使用综合数据基础设施(IDI)来调查或研究各种社会、文化、健康或其他相关结果很有吸引力,也有很大的潜力。IDI为研究人员提供了足够的数据,以调查太平洋社区的结果,达到许多研究中没有的详细程度。本文的总体目的是利用IDI数据讨论涉及太平洋社区的研究项目的适当价值;太平洋社区数据所有权问题;同意识别以及其他伦理考虑。尽管IDI在太平洋健康研究中有很大的潜力,但许多基于IDI数据的研究结果被认为是他们所描述的社区的赤字框架和两极分化。一些人会认为,这些发现突出了健康或社会公平方面的差异,并指出了应由政府组织负责的缺陷。大多数分析都没有调查社区的实际途径,以找到与这些社区的价值观或既定基础设施相一致的解决方案。本文提出了对蒂瓦伊/蒂瓦伊研究框架的扩展,并展示了它如何利用IDI数据纳入太平洋研究中应该反映的价值观。随着在一系列学科中的应用,与许多太平洋研究模型一样,蒂瓦伊框架已被应用于定性或小型混合方法项目,并仅限于库克群岛的研究。该文件描述了一个特定太平洋健康研究项目的价值观纲要,并提出了如何将这些原则纳入该研究的框架。希望本文能为其他涉及行政或其他大数据的定量太平洋研究项目提供一个起点。此外,它还为任何研究提供了蓝图,无论是太平洋研究还是其他研究,都要明确他们希望为他们研究的重点社区维护的价值观原则和联系
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An Application of a Tivaivai Research framework to a quantitative Pacific health research project using New Zealand’s Integrated Data Infrastructure
Using the Integrated Data Infrastructure (IDI) to investigate or research various social, cultural, health, or other related outcomes is appealing and has a lot of potential. The IDI offers sufficient numbers for researchers to investigate outcomes in Pacific communities to a level of detail not available in many studies. The overall aim of this paper is discuss the appropriate values for research projects involving Pacific communities using IDI data; issues around ownership of data from Pacific communities; consent; identification; and other ethical considerations. Although the IDI has a great deal of potential for Pacific health research, many findings based on research using IDI data have been recognised as deficit-framed and polarising for the communities they describe. Some would argue that such findings highlight discrepancies in health or social equity and point to deficiencies that should be the responsibility of governmental organisations. Most analyses stop short of investigating practical pathways for communities to find solutions that are sympathetic to the values or established infrastructure of those communities. This paper proposes an extension to the Tivaivai/Tivaevae research framework and shows how it incorporates values that should be reflected in Pacific research using IDI data. With applications in a range of disciplines, the Tivaivai framework, like many Pacific research models, has been applied to qualitative or small mixed-methods projects, and restricted to Cook Islands research. The paper describes an outline of values that will underpin a specific Pacific health research project and presents a framework for how to incorporate those principles into that study. It is hoped, that this paper may provide a starting point for other quantitative Pacific research projects involving administrative or other big data. Further, it also provides a blueprint for any study, Pacific or otherwise, to be explicit about the values principles and connection they wish to uphold for the communities that are the focus of their research
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