Abstract
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 subjects are surveyed about their experiences or beliefs. Rather, the study approach described herein is about engaging people with living experience to co-lead as researchers. Our approach supported Indigenous people to share research that addresses their research priorities and responds to issues relevant to Indigenous Peoples and communities.
Highlights
Over the past decades, the field of public and population health has been revolutionized by data-driven approaches to research
When engaging Indigenous communities in data intensive health research, researchers must understand the colonial history of Indigenous Peoples and the settler state, the ongoing impacts of colonialism on the communities they work with, and the ways in which health research carried out by non-Indigenous researchers has harmed Indigenous communities [10,11,12]
Our work focuses on Indigenous people living with HIV in Canada
Summary
The field of public and population health has been revolutionized by data-driven approaches to research. As part of a path towards reconciliation, non-Indigenous researchers must support Indigenous self-determination in research and actively work towards achieving Indigenous data sovereignty [18] They must recognize and acknowledge the strengths and knowledge of Indigenous peoples, including those with living experience of health issues. Research questions that could be addressed using existing cohorts or data linkages were formulated together, and team members worked cooperatively with both Indigenous and Western ways of knowing throughout the research process. Funded by the Canadian Institutes for Health Research, our ongoing work aims to: 1) develop an ethical framework and best practice recommendations for dataintensive research involving Indigenous communities 2) identify ethical ways to make large linked datasets accessible to Indigenous communities; and 3) expand on research models bridging epidemiological methods and Indigenous worldviews.
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