Raymond Lovett

A review of Australian health privacy regulation regarding the use and disclosure of identified data to conduct data linkage

Objective: To review Australian legislation about privacy, focusing on provisions within the regulations to conduct health research using identified data and lobby for regulatory change in the ACT.

Understanding barriers to fruit and vegetable intake in the Australian Longitudinal Study of Indigenous Children: a mixed-methods approach

Objective To identify barriers to fruit and vegetable intake for Indigenous Australian children and quantify factors related to these barriers, to help understand why children do not meet recommendations for fruit and vegetable intake. Design We examined factors related to carer-reported barriers using multilevel Poisson models (robust variance); a key informant focus group guided our interpretation of findings. Setting Eleven diverse sites across Australia. Subjects Australian Indigenous children and their carers (N 1230) participating in the Longitudinal Study of Indigenous Children. Results Almost half (45 %; n 555/1230) of carers reported barriers to their children’s fruit and vegetable intake. Dislike of fruit and vegetables was the most common barrier, reported by 32·9 % of carers; however, we identified few factors associated with dislike. Carers were more than ten times less likely to report barriers to accessing fruit and vegetables if they lived large cities v. very remote areas. Within urban and inner regional areas, child and carer well-being, financial security, suitable housing and community cohesion promoted access to fruit and vegetables. Conclusions In this national Indigenous Australian sample, almost half of carers faced barriers to providing their children with a healthy diet. Both remote/outer regional carers and disadvantaged urban/inner regional carers faced problems accessing fruit and vegetables for their children. Where vegetables were accessible, children’s dislike was a substantial barrier. Nutrition promotion must address the broader family, community, environmental and cultural contexts that impact nutrition, and should draw on the strengths of Indigenous families and communities.

Are Indigenous mortality gaps closing: how to tell, and when?

It is well known that the health of Australia’s Aboriginal and Torres Strait Islander people is considerably poorer than that of their non-Indigenous counterparts. Strategies, policies, programs and funding over many years have been targeted toward improving the health of Indigenous Australians and closing the gap in health status between Indigenous and non-Indigenous Australians. In this article, we review trends in key mortality rates for both populations and two complementary indices of the gap between them, both of which are essential to understanding progress or otherwise in closing the mortality gaps. Importantly, we also discuss the time required until the impact of policy changes can be assessed.​

Indigenous health data and the path to healing

2022 www.thelancet.com Vol 390 November 4, 2017 The health disadvantages of Indigenous peoples around the world have their roots in colonisation and discrimination and are related to a loss of autonomy over lands and culture. This history has profoundly affected social determinants of health, such as poverty and marginalisation, and contributed to higher rates of communicable and non-communicable diseases in Indigenous people, and life expectancies that are typically 5 years or more lower than in non-Indigenous populations. Despite persistent health inequities, Indigenous peoples are determining the path to healing their communities. Reports often portray Indigenous health as only a problem and overemphasise negative findings, rather than highlight progress that has been made in certain areas (eg, smoking rates, cardiovascular deaths, and vaccine coverage). To document progress, Indigenous communities need accurate data to measure determinants of health, access to health services, and the burden of important diseases and their complications. But major gaps remain in the availability and adequacy of data on Indigenous health. Indigenous peoples have long claimed sovereignty over their culture and lands and are now making this claim over health data, believing this will empower communities and guide them in advocating for better health and health care. Article 24 of the United Nations Declaration on the Rights of Indigenous Peoples asserts the right to achieve the highest attainable health. However, it does not provide guidance on governance of the data that are needed to measure progress towards this goal. Greater efforts are needed to track the health of Indigenous peoples, and address concerns about the ways in which data are gathered and the political ends to which they might be used. The landscape of health data is changing with increasing access to diverse sources, including healthsystem encounters, health payment claims, disease registries, vital statistics, prescriptions, and community care services. The value of these routinely collected data is enhanced if they can be linked securely and anonymously at the level of the individual to create longitudinal records. In several countries, routinely collected data include Indigenous identifiers or can be linked to files that include this information. In Australia, the Commonwealth (federal government) has responsibility for primary health care through Medicare, and Indigenous identity can be registered when enrolling for coverage. However, enrolment in Medicare is incomplete, as is Indigenous self-identification. The linkage of Medicare to other administrative and registry data to investigate the health and care of Indigenous peoples first occurred in 2005 in Western Australia but has not progressed at the national level. By contrast, Aotearoa/New Zealand has had mandatory collection of ethnicity data, including Māori identity, since the 1990s. Ethnicity is collected as part of public health surveillance and surveys, and national and administrative data collections. Ethnicity data are used to address health inequities, inform health priorities, and monitor Treaty of Waitangi obligations to Māori. One initiative links de-identified individual-level data from health datasets with data from the census and other administrative Indigenous health data and the path to healing

The Aboriginal and Torres Strait Islander smoking epidemic: what stage are we at, and what does it mean?

Smoking is the leading contributor to the burden of disease among Aboriginal and Torres Strait Islander Australians, and there is considerable potential for change. Understanding the epidemic stage may provide insight into probable trends in smoking-attributable mortality, and inform program and policy development. Tobacco use among Aboriginal and Torres Strait Islander Australians has declined substantially, accompanied by declining tobacco-related cardiovascular mortality. Based on the available evidence, we expect tobacco-related cancer mortality to remain high, but peak within the next decade; however, there is a critical need for improved evidence to make an accurate assessment. The continuation and expansion of comprehensive tobacco reduction measures is expected to further decrease tobacco use. Health gains will be observed over both the short and long term.

A systematic review protocol: social network analysis of tobacco use

BackgroundTobacco use is the single most preventable cause of death in the world. Evidence indicates that behaviours such as tobacco use can influence social networks, and that social network structures can influence behaviours. Social network analysis provides a set of analytic tools to undertake methodical analysis of social networks. We will undertake a systematic review to provide a comprehensive synthesis of the literature regarding social network analysis and tobacco use. The review will answer the following research questions: among participants who use tobacco, does social network structure/position influence tobacco use? Does tobacco use influence peer selection? Does peer selection influence tobacco use?MethodsWe will follow the Preferred Reporting Items for Systemic Reviews and Meta-Analyses (PRISMA) guidelines and search the following databases for relevant articles: CINAHL (Cumulative Index to Nursing and Allied Health Literature); Informit Health Collection; PsycINFO; PubMed/MEDLINE; Scopus/Embase; Web of Science; and the Wiley Online Library. Keywords include tobacco; smoking; smokeless; cigarettes; cigar and ‘social network’ and reference lists of included articles will be hand searched. Studies will be included that provide descriptions of social network analysis of tobacco use.Qualitative, quantitative and mixed method data that meets the inclusion criteria for the review, including methodological rigour, credibility and quality standards, will be synthesized using narrative synthesis. Results will be presented using outcome statistics that address each of the research questions.DiscussionThis systematic review will provide a timely evidence base on the role of social network analysis of tobacco use, forming a basis for future research, policy and practice in this area. This systematic review will synthesise the evidence, supporting the hypothesis that social network structures can influence tobacco use. This will also include exploring the relationship between social network structure, social network position, peer selection, peer influence and tobacco use across all age groups, and across different demographics. The research will increase our understanding of social networks and their impact on tobacco use, informing policy and practice while highlighting gaps in the literature and areas for further research.

Associations between Participation in a Ranger Program and Health and Wellbeing Outcomes among Aboriginal and Torres Strait Islander People in Central Australia: A Proof of Concept Study

Culture can be viewed as an integral part of Aboriginal and Torres Strait Islander health and wellbeing. This study explores the association between caring for country, through participation in a Ranger program, and wellbeing. We analyzed cross-sectional data collected in Central Australia in 2017, comparing health and wellbeing (life satisfaction, general health, psychological wellbeing and family wellbeing) among Aboriginal and Torres Strait Islander peoples employed as Rangers (n = 43) versus not employed as Rangers (n = 160). We tested if any differences in outcomes were explained by differences in key demographic or health factors. Ranger participation was significantly associated with very high life satisfaction (PR = 1.69, 95% CI: 1.29, 2.20) and high family wellbeing (PR = 1.47, 95% CI: 1.13, 1.90); associations remained significant after individual adjustment for education, income, employment, health risk factors and health conditions. The magnitude and direction of associations were similar for very good general health, but results were not significant. We did not identify an association between Ranger participation and psychological wellbeing. While based on a small sample, these findings support the assertion that participation in the Ranger program is associated with positive health and wellbeing outcomes. This supports the continuation of cultural participation and practice through the Ranger program and has implications for funding, program and policy development.

‘Telling our story... Creating our own history’: caregivers’ reasons for participating in an Australian longitudinal study of Indigenous children

BackgroundImproving the wellbeing of Indigenous populations is an international priority. Robust research conducted with Aboriginal and Torres Strait Islander peoples is key to developing programs and policies to improve health and wellbeing. This paper aims to quantify the extent of participation in a national longitudinal study of Aboriginal and Torres Strait Islander (Indigenous Australian) children, and to understand the reasons why caregivers participate in the study.MethodsThis mixed methods study uses data from Wave 6 of Footprints in Time, the Longitudinal Study of Indigenous Children. We conducted descriptive analysis of quantitative variables to characterise the sample and retention rates. We applied conventional content analysis to 160 caregivers’ open-ended responses to the question, ‘Why do you stay in the study?’, identifying themes and overarching meta-themes.ResultsThe study has maintained a high retention rate, with 70.4% (n = 1239/1671) of the baseline sample participating in the study’s 6th wave. We identified seven themes related to why participants stay in the study: telling our story, community benefit, satisfaction, tracking Study Child’s progress, study processes, receiving study gifts, and valuing what the study stands for. These related to two meta-themes: reciprocity, and trust and connection. Caregivers reported that participation was associated with benefits for their family and community as well as for the study. They identified specific features of the Footprints in Time study design that built and maintained trust and connection between participants and the study.ConclusionsOur findings support the assertion that Aboriginal and Torres Strait Islander people want to be involved in research when it is done ‘the right way’. Footprints in Time has successfully recruited and retained the current-largest cohort of Aboriginal and Torres Strait Islander children in Australia through the use of participatory research methodologies, suggesting effective study implementation and processes. Participants indicated ongoing commitment to the study resulting from perceptions of reciprocity and development of trust in the study. Footprints in Time can serve as a successful model of Aboriginal and Torres Strait Islander health research, to promote good research practice and provides lessons for research with other Indigenous populations.

Study protocol: Our Cultures Count, the Mayi Kuwayu Study, a national longitudinal study of Aboriginal and Torres Strait Islander wellbeing

Introduction Aboriginal and Torres Strait Islander peoples are Australia’s first peoples and have been connected to the land for ≥65 000 years. Their enduring cultures and values are considered critical to health and wellbeing, alongside physical, psychological and social factors. We currently lack large-scale data that adequately represent the experiences of Aboriginal and Torres Strait Islander people; the absence of evidence on cultural practice and expression is particularly striking, given its foundational importance to wellbeing. Method and analysis Mayi Kuwayu: The National Study of Aboriginal and Torres Strait Islander Wellbeing (Mayi Kuwayu Study) will be a large-scale, national longitudinal study of Aboriginal and Torres Strait Islander adults, with linkage to health-related administrative records. The baseline survey was developed through extensive community consultation, and includes items on: cultural practice and expression, sociodemographic factors, health and wellbeing, health behaviours, experiences and environments, and family support and connection. The baseline survey will be mailed to 200 000 Aboriginal and Torres Strait Islander adults (≥16 years), yielding an estimated 16 000–40 000 participants, supplemented through face-to-face recruitment. Follow-up surveys will be conducted every 3–5 years, or as funding allows. The Mayi Kuwayu Study will contribute to filling key evidence gaps, including quantifying the contribution of cultural factors to wellbeing, alongside standard elements of health and risk. Ethics and dissemination This study has received approval from national Human Research Ethics Committees, and from State and Territory committees, including relevant Aboriginal and Torres Strait Islander organisations. The study was developed and is conducted in partnership with Aboriginal and Torres Strait Islander organisations across states and territories. It will provide an enduring and shared infrastructure to underpin programme and policy development, based on measures and values important to Aboriginal and Torres Strait Islander peoples. Approved researchers can access confidentialised data and disseminate findings according to study data access and governance protocols.

Indigenous Children’s Resilience: The Role of Demographics, Relationships, Achievement and Culture

Health conditions in childhood can have immediate and long-term impacts on the wellbeing of children and their families. It is important to understand what health conditions and events are common, and to understand what services Aboriginal and Torres Strait Islander children are accessing, across different environments, in order to improve health services and prevention. This chapter provides a summary of the published literature to situate the LSIC data in the context of what is already known and to identify how it contributes to new understandings. This chapter discusses health conditions and events experienced by children, exploring variation by remoteness. We also report on the extent to which health care was needed but not accessed, and the reasons why services were not accessed.