Analysis of policies relevant to Aboriginal and Torres Strait Islander Peoples could help improve health outcomes—a critical challenge in Australia. While there are many health policy analysis frameworks, we did not find one which supported decolonising approaches across stages of the policy cycle. Generic frameworks were not based on decolonising approaches, and so risk perpetuating structural inequalities underpinning health disparities. Aboriginal and Torres Strait Islander specific frameworks articulated ways of working rather than addressing policy stages. We devised a new policy analysis framework by drawing upon Aboriginal and Torres Strait Islander specific and other policy analysis frameworks. The new framework can help critically analyse existing Aboriginal and Torres Strait Islander health policy and guide future policy making.
Background: Tobacco smoking is the leading contributor to the burden of disease among Aboriginal and Torres Strait Islander Australians. Reducing tobacco use in this population is a public health priority. Precise monitoring of smoking prevalence trends is central to implementation and evaluation of effective tobacco control. The way in which trends are reported influences understanding of the extent of progress, with potential implications for policy. Our objective was to quantify absolute changes in Aboriginal and Torres Strait Islander adult (?18 years old) daily tobacco smoking prevalence from 2004 to 2015, including comparisons with the total Australian population, and by age, sex and remoteness. Methods: We analysed multiple nationally representative surveys of the Aboriginal and Torres Strait Islander, and total Australian, population conducted from 2004 to 2015. Aligned with strength-based approaches, we applied a progress frame, focusing on absolute differences in smoking prevalence within the Aboriginal and Torres Strait Islander population. Results: The prevalence of current daily smoking among Aboriginal and Torres Strait Islander adults nationally was 50.0% (95% confidence interval [CI] 47.9, 52.2) in 2004-05 and 41.4% (95% CI 39.1, 43.6) in 2014-15, representing an absolute prevalence decrease of 8.6 percentage points (95% CI 5.5, 11.8) over the past decade. This is comparable with the 6.8 percentage point (95% CI 5.6, 7.9) decrease in smoking prevalence in the total Australian population over the same period, from 21.3% in 2004-05 (95% CI 20.5, 22.0) to 14.5% in 2014-15 (95% CI 13.6, 15.4). Particular success in reducing Aboriginal and Torres Strait Islander daily smoking was observed among younger age groups, with a decrease of 13.2 percentage points for 18-24-year-olds (95% CI 5.9, 20.4), 9.0 percentage points for 25-34-year-olds (95% CI 2.7, 15.3) and 8.7 percentage points for 35-44-year-olds (95% CI 2.6, 14.8). Smoking prevalence in those living in urban/regional areas decreased by 10.2 percentage points (95% CI 6.2, 14.1). Conclusions: Substantial progress has been made in reducing smoking, with an estimated 35 000 fewer Aboriginal and Torres Strait Islander adults smoking every day in 2014-15 compared with if daily smoking remained at 2004-05 prevalence. This will lead to thousands of lives saved. The observed success in the younger age groups is encouraging. Continued resourcing and comprehensive tobacco control efforts are required to ensure positive trends continue. ; This work was supported by the National Health and Medical Research Council of Australia (EB, grant number 1042717; RL, 1088366). AW is supported through a scholarship from the Australian Government Department of Health
The centrality of culture to Indigenous peoples' health and wellbeing is becoming increasingly acknowledged in government policy. In Australia, the Indigenous Ranger program is a leading example of employment that supports increased cultural participation. In 2017, we demonstrated higher life satisfaction and family wellbeing among Indigenous Rangers compared to non-Rangers in Central Australia. Using an expanded national dataset, this present study aimed to: examine if associations between Ranger status and wellbeing continued to be observed in Central Australia; assess if these associations were observed among non-Central Australian Rangers; and, quantify the effect of mediating variables (Rangers status, cultural factors) on wellbeing outcomes. We analyzed Mayi Kuwayu baseline data (n = 9691 Aboriginal and Torres Strait Islander people) and compared participants who identified as past or currently employed Rangers compared to non-Rangers across two geographic locations (Central Australia, non-Central Australia). Ranger participation was significantly associated with very high life satisfaction and family wellbeing in Central Australia (high life satisfaction PR 1.31, 95% CI 1.09–1.57, and family wellbeing (PR 1.17, 95% CI 1.01–1.36) and non-Central Australia (high life satisfaction PR 1.29, 95% CI 1.06–1.57), family wellbeing (PR 1.37, 95% CI 1.14–1.65). These findings concord with those observed in the 2017 proof-of-concept study. Additionally, we found that Ranger status partially mediated the relationships between existing cultural practices (first language as your Indigenous language and living on your country) and the two wellbeing outcomes. Current cultural practices, spending time on country and speaking your Aboriginal language, also partially mediated the associations between Ranger status and high life satisfaction, and between Ranger status and high family wellbeing. This analysis supports evidence that both Ranger employment and cultural participation are contributors to wellbeing. Ranger work is ...
AbstractIndigenous Data Sovereignty, in its proclamation of the right of Indigenous peoples to govern the collection, ownership, and application of data, recognises data as a cultural and economic asset. The impact of data is magnified by the emergence of Big Data and the associated impetus to open publicly held data (Open Data). Aboriginal and Torres Strait Islander peoples, families and communities, heavily overrepresented in social disadvantage–related data will also be overrepresented in the application of these new technologies, but in a data landscape, Indigenous peoples remain largely alienated from the use of data and its utilization within the channels of policy power. Existing data infrastructure, and the emerging Open Data infrastructure, neither recognise Indigenous agency and worldviews nor consider Indigenous data needs. This is demonstrated in the absence of any consideration of Indigenous data issues in Open Data discussions and publication. Thus, while the potential benefits of this data revolution are trumpeted, our marginalised social, cultural and political location suggests we will not share equally in these benefits. This paper discusses the unforeseen (and likely unseen) consequences of the influence of Open Data and Big Data and discusses how Indigenous Data Sovereignty can mediate risks while providing pathways to collective benefits.
Background Evidence on the effectiveness of postal recruitment methods for Indigenous peoples is lacking. Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing, uses multi-staged sampling. We aimed to test postal surveys as a primary recruitment method, analysing preliminary response rate data to inform the Study's ongoing sampling approach. Methods Twenty thousand adults aged ≥16 years were sampled from Aboriginal and Torres Strait Islander people enrolled in the Medicare Australia Enrolment Database. We calculated response rates at 4 and 15 weeks, overall and by age group, gender, state/territory and remoteness. Results The overall response rate was 2.3% (n = 456/20000). Highest response rates were observed among males and females ≥50 years from major cities (6.0, 95%CI 4.4–7.9 and 5.5%, 4.1–7.2, respectively) and regional areas (6.0%, 4.6–7.6 and 6.2%, 4.9–7.7, respectively). Younger age groups and remote areas had lower response rates; all remote age groups < 50 years had a response rate ≤ 0.6%. While most participants responded on the paper surveys, online responses were more common among younger age groups and, respondents with higher education levels and whose first language was not English. Conclusion Using a postal survey, we observed response rates of ≥5.5% among older Aboriginal and Torres Strait Islander adults in major cities and regional areas; response rates were lower in other groups. A two-stage postal distribution approach provided an opportunity to adapt sampling approaches to different demographic groups. Based on initial response rates, the sampling strategy was revised to send postal surveys to groups with higher response rates groups and focus field recruitment strategies on low response groups.on low response groups. ; The Mayi Kuwayu Study development and preliminary postal distribution was supported by the Lowitja Institute (ref: 1344). AW is supported by an Australian Government Research Training Program Scholarship and an ANU Dean's Award Scholarship. KT is supported by the Lowitja Institute (ref: 1344)
Global disease trackers quantifying the size, spread, and distribution of COVID-19 illustrate the power of data during the pandemic. Data are required for decision-making, planning, mitigation, surveillance, and monitoring the equity of responses. There are dual concerns about the availability and suppression of COVID-19 data; due to historic and ongoing racism and exclusion, publicly available data can be both beneficial and harmful. Systemic policies related to genocide and racism, and historic and ongoing marginalization, have led to limitations in quality, quantity, access, and use of Indigenous Peoples' COVID-19 data. Governments, non-profits, researchers, and other institutions must collaborate with Indigenous Peoples on their own terms to improve access to and use of data for effective public health responses to COVID-19.
Australia's absolute cardiovascular disease (CVD) risk assessment algorithm1 first examines whether individuals meet criteria for clinically determined high CVD risk and, in those not meeting these criteria, applies the Framingham Risk Equation to estimate an individual's risk of having a CVD event in the next 5 years. The same risk equation is used for Aboriginal and Torres Strait Islander people and non-Indigenous Australians, although there is variation in underlying risk across the two populations, with the former experiencing a greater burden of cardiovascular risk factors. ; This research was funded by a grant from the Australian Government Department of Health.
Topic: Perspectives on Linkage Involving Indigenous dataIndigenous populations across the globe are reaffirming their sovereignty rights in the collection and use of Indigenous data. The Indigenous data sovereignty movement has been widely influential and can be unsettling for those who routinely use population-level linked data that include Indigenous identifiers. Ethical policies that stipulate community engagement for access, interpretation and dissemination of Indigenous data create an enabling environment through the critical process of negotiating and navigating data access in partnership with communities. This session will be designed to create space for leading Indigenous voices to set the tone for the discussion around Indigenous population data linkage.
Objectives:
To provide participants with an opportunity to build on the themes of Indigenous Data Sovereignty presented in the keynote session as they apply to diverse Indigenous populations.
To explore approaches to the linkage of Indigenous-identified population data across four countries, including First Nations in three Canadian regions.
To share practical applications of Indigenous data sovereignty on data linkage and analysis and discussion.
To center Indigenous-driven data linkage and research.
Facilitator:Jennifer Walker. Canada Research Chair in Indigenous Health, Laurentian University and Indigenous Lead, Institute for Clinical Evaluative Sciences.
Collaborators:
Alberta: Bonnie Healy, Tina Apsassin, Chyloe Healy and William Wadsworth (Alberta First Nations Information Governance Centre)
Ontario: Carmen R. Jones (Chiefs of Ontario) and Jennifer Walker (Institute for Clinical Evaluative Sciences)
British Columbia: Jeff Reading (Providence Health Centre) and Laurel Lemchuk-Favel (First Nations Health Authority)
Australia: Raymond Lovett (Australian National University)
Aotearoa / New Zealand: Donna Cormack (University of Otago)
United States: Stephanie Rainie and Desi Rodriguez-Lonebear (University of Arizona)
Session format: 90 minutesCollaborators will participate in a round-table introduction to the work they are doing. Collaborators will discuss the principles underlying their approaches to Indigenous data linkage as well as practical and concrete solutions to challenges. Questions to guide the discussion will be pre-determined by consensus among the collaborators and the themes will include: data governance, community engagement, Indigenous-led linkage and analysis of data, and decision-making regarding access to linked data. Other participants attending the session will be encouraged to listen and will have an opportunity to engage in the discussion and ask questions.
Intended output or outcome:The key outcome of the session will be twofold. First, those actively working with Indigenous linked data will have an opportunity for an in-depth and meaningful dialogue about their work, which will promote international collaboration and sharing of ideas. Second, those with less experience and knowledge of the principles of Indigenous data sovereignty and their practical application will have an opportunity to listen to Indigenous people who are advancing the integration of Indigenous ways of knowing into data linkage and analysis.
The output of the session will be a summary paper highlighting both the diversity and commonalities of approaches to Indigenous data linkage internationally. Areas where consensus exists, opportunities for collaboration, and challenges will be highlighted.
Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the 'CARE Principles for Indigenous Data Governance' (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people– and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the 'FAIR Guiding Principles for scientific data management and stewardship' (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will 'Be FAIR and CARE.' In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.
Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the 'CARE Principles for Indigenous Data Governance' (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people– and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the 'FAIR Guiding Principles for scientific data management and stewardship' (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will 'Be FAIR and CARE.' In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.
