Privileging First Nations voices and decision-making in pandemic preparedness and response

Abstract

Background: Infectious disease emergencies, like pandemics, pose a serious threat to public health. Historically infectious diseases have had a major impact on First Nations peoples globally, and in Australia. First Nations peoples were notably missing from Australia’s pre-2009 pandemic plan, which meant disease control strategies and responses were not inclusive or reflective of First Nations ways of living, being and doing. One-size-fits-all approaches to infectious disease emergencies do not work for all. Appropriate and meaningful engagement with First Nations peoples in the development, implementation and evaluation of infectious disease plans and responses is urgently needed. However, there is no guidance on ‘how’ this should be done. Although deliberative inclusive approaches, such as citizens’ juries, have been used to engage the public on a range of healthcare and public health policy issues, there is limited evidence of deliberative approaches with First Nations peoples particularly in an infectious disease emergency context.

Purpose: This thesis reviews pandemic governance and explores pandemic preparedness and response with First Nations Peoples in the lands now called Australia. The research not only contributes to privileging and amplifying First Nations voices, representation and leadership in infectious disease emergency response and management but also provides clear guidance for public health practitioners, researchers and policymakers in how to engage First Nations peoples. This thesis aims to develop and evaluate an approach of engaging First Nations peoples in decision-making about infectious disease emergency policy and practice.

This research provides a model for appropriately, respectfully and meaningfully engaging First Nations peoples in a way that promotes collaboration, trust and responsiveness. The findings offer valuable and constructive insights, and have important implications on planning and responding to future pandemics in Australia. Engaging First Nations peoples in decision-making about infectious disease emergencies will enable future infectious disease emergency response plans to be more inclusive of and tailored to the needs and priorities of First Nations peoples and communities. Priorities and plans that are more reflective of First Nations culture, knowledges, and social realities, and thus make a real difference.

Methods: The citizens’ juries’ model was adapted and Indigenized to incorporate First Nations principles and practices into an engagement model. Qualitative research methods were used as well as Indigenist research and community-based participatory action research approaches to explore the research questions.

Findings: Decisions around planning for and responding to infectious disease emergencies must include and centre First Nations peoples and communities.

Conclusions: This work has provided public health policymakers and practitioners a model of ‘how’ to engage with First Nations peoples appropriately and effectively before and when an infectious disease emergency event happens. First Nations Community Panels are an effective and respectful approach to actively engage First Nations peoples in planning and responding to infectious disease emergencies.