British Columbia Centre for Excellence in HIV/AIDS, 1026 Nelson Street, Vancouver, BC, V6E 4S7, Canada.
Building More Bridges Research Team, Vancouver, BC, Canada.
Int J Popul Data Sci. 2021 May 20;6(1):1386. doi: 10.23889/ijpds.v6i1.1386.
The use of data intensive health research has allowed for greater understandings of population health. When conducting data intensive health research, engaging and involving the community is essential for conducting meaningful research that is responsive to the public's needs. Particularly, when engaging Indigenous communities in research, there is a need to understand historical and ongoing impacts of colonialism and recognize the strengths in Indigenous Peoples' knowledges and experiences while supporting Indigenous leadership and self-determination in research. This article describes the approach our research team/organization used to engage and involve Indigenous people living with HIV in three research projects using large, linked datasets and looking at HIV outcomes of Indigenous populations in Canada. The foundation of these projects was simultaneously: 1) supporting Indigenous people living with HIV to be involved as research team members, 2) developing research questions to answer with available datasets, and 3) integrating Indigenous and Western ways of knowing. We have identified important considerations and suggestions for engaging and involving Indigenous communities and individuals in the generation of research ideas and analysis of linked data using community-based participatory research approaches through our work. These include engaging stakeholders at the start of the project and involving them throughout the research process, honouring Indigenous ways of knowing, the land, and local protocols and traditions, prioritizing Indigenous voices, promoting co-learning and building capacity, and focusing on developing longitudinal relationships. We describe keys to success and learnings that emerged. Importantly, the methodology practiced and presented in this manuscript is not a qualitative study design whereby research are surveyed about their experiences or beliefs. Rather, the study approach described herein is about engaging people with living experience to co-lead as Our approach supported Indigenous people to share research that addresses their research priorities and responds to issues relevant to Indigenous Peoples and communities.
使用数据密集型健康研究使人们能够更好地了解人口健康。在进行数据密集型健康研究时，与社区接触和参与对于进行有意义的研究至关重要，这些研究需要回应公众的需求。特别是，在与原住民社区进行研究时，需要了解殖民主义的历史和持续影响，并认识到原住民知识和经验的优势，同时支持原住民在研究中的领导地位和自决权。本文描述了我们的研究团队/组织在使用大型链接数据集进行的三个研究项目中，与感染艾滋病毒的原住民接触和参与的方法，这些研究项目旨在探讨加拿大原住民人口的艾滋病毒结果。这些项目的基础同时是：1）支持感染艾滋病毒的原住民作为研究团队成员参与，2）开发可用数据集来回答的研究问题，以及 3）整合原住民和西方的知识体系。通过我们的工作，我们确定了使用基于社区的参与式研究方法，在产生研究想法和分析链接数据方面与原住民社区和个人接触和参与的重要考虑因素和建议，这些方法包括在项目开始时与利益相关者接触，并在整个研究过程中让他们参与，尊重原住民的知识体系、土地以及当地的协议和传统，优先考虑原住民的声音，促进共同学习和能力建设，并专注于发展长期关系。我们描述了成功的关键和出现的经验教训。重要的是，本文所呈现的实践和方法并不是一项关于调查人们的经验或信仰的定性研究设计。相反，本文所描述的研究方法是关于让有生活经验的人共同领导，我们的方法支持原住民分享解决他们研究重点并回应与原住民和社区相关的问题的研究。
