Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools.

BACKGROUND: Measurement of patients' healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. METHODS: A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. RESULTS: No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics 'partially' captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. CONCLUSIONS: Existing tools are likely to miss key aspects of Indigenous peoples' experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.

A historical overview of legislated alcohol policy in the Northern Territory of Australia: 1979-2021.

BACKGROUND: The Northern Territory (NT) has the highest levels of alcohol consumption and harms in Australia. Since the creation of the NT Liquor Act 1978, which came into effect in 1979, numerous legislated alcohol policies have been introduced to attempt to address these harms. We present a narrative historical overview of alcohol policies implemented in the NT from 1979 to 2021. METHODS: Using scoping review methodology, databases were searched from 1979 to 2021. Of 506 articles screened, 34 met inclusion criteria. Reference lists of all included articles were searched, resulting in the inclusion of another 41 articles and reports, totalling 75 final documents. Policies were organised using Babor and colleagues (2010) established framework: 1. pricing/ taxation; 2. regulating physical availability; 3. modifying drinking environments; 4. drink-driving countermeasures; 5. restrictions on marketing; 6. education/persuasion; 7. treatment/early intervention. RESULTS: Two pricing/taxation policies have been implemented, Living With Alcohol (LWA) and Minimum Unit Price, both demonstrating evidence of positive effects on health and consumption outcomes. Eight policies approaches have focused on regulating physical availability, implemented at both individual and local area levels. Several of these policies have varied by location and been amended over time. There is some evidence demonstrating reduction in harms attributable to Liquor Supply Plans, localised restrictions, and General Restricted Areas, although these have been site specific. Of the three policies which targeted modifying the drinking environment; one was evaluated, finding a relocation of social harms, rather than a reduction. The literature outlines a range of controversies, particularly regarding policies in domain 2-3, including racial discrimination and a lack of policy stability. No policies relating to restricting marketing or education/persuasion programs were found. The only drink-driving legislated policy was considered to have contributed to the success of the LWA program. Three policies relating to treatment were described; two were not evaluated and evidence showed no ongoing benefits of Alcohol Mandatory Treatment. DISCUSSION: The NT has implemented a large number of alcohol policies, several of which have evidence of positive effects. However, these policies have often existed in a context of clear politicisation of alcohol policy, frequently with an implicit focus on Aboriginal people's consumption.

Understanding Indigenous Australians' experiences of cancer care: stakeholders' views on what to measure and how to measure it.

BACKGROUND: Disparities in cancer outcomes amongst Indigenous Australians reflect a pattern of reduced access to and engagement with health services. A growing emphasis on patient-centred care has increased efforts to measure patient experiences, but it is unclear whether existing approaches: a) assess the most critical aspects of care that shape the experiences of Indigenous people with cancer; and b) facilitate the engagement and participation of Indigenous people with the measurement of care experiences. METHODS: Two rounds of semi-structured interviews and focus groups were used to elicit stakeholders' views on priorities for measuring the cancer care experiences of Indigenous cancer patients and on the acceptability of various methods for capturing such information. Participants included Indigenous people affected by cancer (n = 17), health professionals (n = 28) and individuals in both groups (n = 7). Recruitment occurred through a national web-based network and through four cancer services in urban and regional areas in three jurisdictions across Australia. RESULTS: Several aspects of cancer care were identified as critical in shaping Indigenous patients' experiences. Key themes included: feeling safe in the system; importance of Indigenous staff; barriers to care; the role of family and friends; effective communication and education; and coordination of care and transition between services. Those participants affected by carers' wellbeing and palliative care strongly advocated for the importance of these topics. Participants expressed support for a face-to-face interview with a trusted person as the most appropriate means of collecting cancer care experience information. CONCLUSIONS: While existing experience measurement tools would partially capture some important aspects of care, other critical areas would likely be missed. Appropriate tools and approaches, developed by and with Indigenous people, are urgently needed to determine the extent to which health services are meeting the needs of Indigenous people with cancer, and to identify areas for action to improve these services.

Acute rheumatic fever and rheumatic heart disease: incidence and progression in the Northern Territory of Australia, 1997 to 2010.

BACKGROUND: Although acute rheumatic fever (ARF) and its sequel, rheumatic heart disease (RHD), continue to cause a large burden of morbidity and mortality in disadvantaged populations, most studies investigating the effectiveness of control programs date from the 1950s. A control program, including a disease register, in the Northern Territory of Australia where the Indigenous population has high rates of ARF and RHD allowed us to examine current disease incidence and progression. METHODS AND RESULTS: ARF and RHD incidence rates, ARF recurrence rates, progression rates from ARF to RHD to heart failure, and RHD survival and mortality rates were calculated for Northern Territory residents from 1997 to 2010. For Indigenous people, ARF incidence was highest in the 5- to 14-year age group (males, 162 per 100,000; females, 228 per 100,000). There was little evidence that the incidence of ARF or RHD had declined. The ARF recurrence rate declined by 9% per year after diagnosis. After a first ARF diagnosis, 61% developed RHD within 10 years. After RHD diagnosis, 27% developed heart failure within 5 years. For Indigenous RHD patients, the relative survival rate was 88.4% at 10 years after diagnosis and the standardized mortality ratio was 1.56 (95% confidence interval, 1.23-1.96). CONCLUSIONS: For Indigenous Australians in the Northern Territory, ARF and RHD incidence and associated mortality remain very high. The reduction in ARF recurrence indicates that the RHD control program has improved secondary prophylaxis; a decline in RHD incidence is expected to follow.

Cancer survival for Aboriginal and Torres Strait Islander Australians: a national study of survival rates and excess mortality.

BACKGROUND: National cancer survival statistics are available for the total Australian population but not Indigenous Australians, although their cancer mortality rates are known to be higher than those of other Australians. We aimed to validate analysis methods and report cancer survival rates for Indigenous Australians as the basis for regular national reporting. METHODS: We used national cancer registrations data to calculate all-cancer and site-specific relative survival for Indigenous Australians (compared with non-Indigenous Australians) diagnosed in 2001-2005. Because of limited availability of Indigenous life tables, we validated and used cause-specific survival (rather than relative survival) for proportional hazards regression to analyze time trends and regional variation in all-cancer survival between 1991 and 2005. RESULTS: Survival was lower for Indigenous than non-Indigenous Australians for all cancers combined and for many cancer sites. The excess mortality of Indigenous people with cancer was restricted to the first three years after diagnosis, and greatest in the first year. Survival was lower for rural and remote than urban residents; this disparity was much greater for Indigenous people. Survival improved between 1991 and 2005 for non-Indigenous people (mortality decreased by 28%), but to a much lesser extent for Indigenous people (11%) and only for those in remote areas; cancer survival did not improve for urban Indigenous residents. CONCLUSIONS: Cancer survival is lower for Indigenous than other Australians, for all cancers combined and many individual cancer sites, although more accurate recording of Indigenous status by cancer registers is required before the extent of this disadvantage can be known with certainty. Cancer care for Indigenous Australians needs to be considerably improved; cancer diagnosis, treatment, and support services need to be redesigned specifically to be accessible and acceptable to Indigenous people.

Police-recorded adult sexual assault in the Northern Territory, Australia: Alcohol involvement and alcohol policy effects.

INTRODUCTION: Between 2017 and 2018 three major alcohol policy changes were introduced in the Northern Territory (NT): the Banned Drinker Register, an individual-level ban enforced via ID scanners at takeaway outlets; a Minimum Unit Price on alcohol; and Police Auxiliary Liquor Inspectors, who monitor takeaway outlets to prevent purchase by people who do not have a legal place to consume alcohol. We aimed to: (i) describe alcohol-involved adult sexual assault in the NT; and (ii) estimate the impacts of these alcohol policies on police-recorded adult sexual assault. METHODS: We used victim records for sexual assault where victims were aged 15 years and over. We undertook descriptive analyses for the NT from 2014 to 2020 and used interrupted time series analysis to assess policy impacts across the NT and in Greater Darwin. RESULTS: In 2020, the NT adult victimisation rate was 105 per 100,000. A large minority (40%) of adult sexual assaults involved alcohol. Interrupted time series analyses showed no effect of the Banned Drinker Register or Minimum Unit Price on sexual assault across the NT or in Greater Darwin. DISCUSSION AND CONCLUSIONS: The rate of adult sexual assaults in the NT is extremely high and many involve alcohol. Neither the Banned Drinker Register or Minimum Unit Price were associated with changes in police-recorded adult sexual assault in Greater Darwin or across the NT. Due to small counts, we were unable to assess policy impacts in three of the four main towns, highlighting the challenges of assessing impacts of policies on sexual assault in small population areas.

What are the impacts of alcohol supply reduction measures on police-recorded adult domestic and family violence in the Northern Territory of Australia?

BACKGROUND: During 2017-18, the Northern Territory (NT) introduced a Banned Drinker Register (BDR) and Minimum Unit Price (MUP) NT-wide; Police Auxiliary Liquor Inspectors (PALIs) in three regional towns; and restrictions on daily purchases/opening hours (DPOH) in one regional town. The BDR is an individual-level alcohol ban; MUP is a pricing policy; and PALIs enforce bans on restricted areas at takeaway outlets. This study examines the impact of these policies on adult domestic and family violence (DFV). METHODS: We examined DFV assaults and breaches of violence orders from January 2014 - February 2020 using interrupted time series models for NT, Greater Darwin, Katherine, Tennant Creek, and Alice Springs. To account for increasing numbers of individuals on the BDR we tested two timepoints (Sept 2017, March 2018). FINDINGS: Following DPOH, assaults (78 %) and alcohol-involved assaults (92 %) decreased in Tennant Creek. After PALIs, assaults (79 %) in Tennant Creek, and breaches (39 %) and alcohol-involved breaches (58 %) in Katherine decreased. After MUP, assaults (11 %), alcohol-involved assaults (21 %) and alcohol-involved breaches (21%) decreased NT wide. After MUP/PALIs in Alice Springs, alcohol-involved assaults (33 %), breaches (42 %), and alcohol-involved breaches (57 %) decreased. BDR (Sept 2017) found increases in assaults (44 %) and alcohol-involved assaults (39 %) in Katherine and assaults (10%) and alcohol-involved assaults NT-wide (17 %). There were increases of 21 %-45 % in breaches NT-wide, in Darwin, Katherine, and Alice Springs. Following March 2018 found increases in assaults (33 %) and alcohol-involved assaults (48 %) in Katherine. There were increases - from 20 % to 56 % - in breaches in NT-wide, Katherine, and Alice Springs. CONCLUSION: PALIs and DPOH were associated with some reductions in DFV; the BDR was associated with some increases. The upward trend commences prior to the BDR, so it is also plausible that the BDR had no effect on DFV outcomes. Although MUP was associated with reductions in the NT-wide model, there were no changes in sites without cooccurring PALIs.

Murru Minya-informing the development of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research: a protocol for a national mixed-methods study.

INTRODUCTION: Conducting ethical and high-quality health research is crucial for informing public health policy and service delivery to reduce the high and inequitable burden of disease experienced by Aboriginal and Torres Strait Islander people. Ethical guidelines and principles specifically for health research with Aboriginal and Torres Strait Islander people have been developed for use since 1987. However, there has been limited examination of how these are being applied to the conduct of research. METHODS AND ANALYSIS: Murru Minya will be a large-scale national study to examine the implementation of ethical processes in Aboriginal and Torres Strait Islander health research. A mixed-methods design will be used in four baarra (steps). The first three baarra will collect knowledge, experiences and wisdom from three key groups: Aboriginal and Torres Strait Islander communities, research academics, and Human Research Ethics Committees using online surveys, yarning, and semistructured interviews. This knowledge will inform the final baarra of developing a set of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research into the future. ETHICS AND DISSEMINATION: Ethical approval for this research project has been granted by National, State and Territory Human Research Ethics Committees. This research has been developed in collaboration with Aboriginal and Torres Strait Islander researchers, Aboriginal Community Controlled Health Organisation representatives, Aboriginal community members, the National Health Leadership Forum, and Aboriginal and Torres Strait Islander research team. The knowledge translation plan will be integrated and revised throughout the project as partnerships and engagement with Aboriginal and Torres Strait Islander communities continue. All findings will be shared with peak Aboriginal research bodies and Aboriginal and Torres Strait Islander communities in ways that are meaningful to them.

Radiation Therapy and Indigenous Peoples in Canada and Australia: Building Paths Toward Reconciliation in Cancer Care Delivery.

Indigenous peoples represent approximately 5% of the world's population and reside in over 90 countries worldwide. They embody a rich diversity of cultures, traditions, languages and relationships with the land that are shared through many generations and that are distinct from those of the settler societies within which they now live. Many Indigenous peoples have a shared experience of discrimination, trauma, and violation of rights, rooted in complex sociopolitical relationships with settler societies that are still ongoing. This results in continuing social injustices and pronounced disparities in health for many Indigenous peoples around the globe. Indigenous peoples exhibit a significantly higher cancer incidence, mortality, and poorer survival compared to non-Indigenous peoples. Cancer services, including radiotherapy, have not been designed to support the specific values and needs of Indigenous populations, resulting in poorer access to cancer services for Indigenous peoples globally across the entire cancer care spectrum. Specific to radiotherapy, available evidence demonstrates disparities in radiotherapy uptake between Indigenous and non-Indigenous patients. Radiotherapy centres are also located disparately further away from Indigenous communities. Studies are limited by a lack of Indigenous-specific data to help inform effective radiotherapy delivery. Recent Indigenous-led partnerships and initiatives have helped to address existing gaps in cancer care, and radiation oncologists play an important role in supporting such efforts. In this article, we present an overview of access to radiotherapy for Indigenous peoples in Canada and Australia, with a focus on strengthening cancer care delivery through education, partnerships, and research.

An outbreak of acute rheumatic fever in a remote Aboriginal community.

OBJECTIVES: We describe the public health response to an outbreak of acute rheumatic fever (ARF) in a remote Aboriginal community. METHODS: In August 2021, the Northern Territory Rheumatic Heart Disease Control Program identified an outbreak of acute rheumatic fever in a remote Aboriginal community. A public health response was developed using a modified acute poststreptococcal glomerulonephritis protocol and the National Acute Rheumatic Fever Guideline for Public Health Units. RESULTS: 12 cases were diagnosed during the outbreak; six-times the average number of cases in the same period in the five years prior (n=1.8). Half (n=6) of the outbreak cases were classified as recurrent episodes with overdue secondary prophylaxis. Contact tracing and screening of 11 households identified 86 close contacts. CONCLUSIONS: This outbreak represented an increase in both first episodes and recurrences of acute rheumatic fever and highlights the critical need for strengthened delivery of acute rheumatic fever secondary prophylaxis, and for improvements to the social determinants of health in the region. IMPLICATIONS FOR PUBLIC HEALTH: Outbreaks of acute rheumatic fever are rare despite continuing high rates of acute rheumatic fever experienced by remote Aboriginal communities. Nevertheless, there can be improvements in the current national public health guidance relating to acute rheumatic fever cluster and outbreak management.

A framework for operationalising Aboriginal and Torres Strait Islander data sovereignty in Australia: Results of a systematic literature review of published studies.

BACKGROUND: Racial health disparities are only likely to be meaningfully improved by tailoring public health and clinical interventions to the specific needs of Indigenous people and their communities. Accurate tailoring relies on the availability of high-quality Indigenous-specific data. The potential benefits of increased availability of Indigenous data need to be balanced by efforts to ensure those data are collected and used appropriately. This paper identifies characteristics of Indigenous Data Sovereignty (IDS) principles and considers a framework for operationalisation. METHODS: A PRISMA compliant search of the literature was undertaken, using methods detailed in the Cochrane Collaboration Handbook on Systematic Reviews of Health Promotion and Public Health Interventions (1). The search strategy comprised two steps: a search of 11 scientific electronic databases and five grey literature sources. The search was limited by date of publication (1 January 2000 to 1 December 2021). The following keywords and subject heading terms were used: (exp Aboriginal and Torres Strait Islander or Aborigin* or Torres Strait Island* or, Oceanic ancestry group) and (exp research or biomedical research or population surveillance or translational medical research or, research design) and (exp data or datasets or data collection or data management or health surveys or information dissemination or, intellectual property) and (exp self-determination or ownership or control or access or possession or OCAP or sovereignty or, ethics) and, (exp Australia). IDS principles: (i) ownership; (ii) control; (iii) accessibility; (iv) custodianship; (v) accountability to Indigenous people; (vi) amplify Community voice; (vii) relevant and reciprocal; and (viii) sustainably self-determining. Using standard data extraction forms, we examined relevant Australian studies to identify key characteristics and frequency with which they cited IDS principles. These findings were consolidated into an operationalisation framework. FINDINGS: 34 relevant Australian published studies were identified. The most frequently cited IDS principles were Accountability to Aboriginal and Torres Strait Islander peoples and sustainably self-determining. The least frequently cited principle was Access. A framework to operationalise IDS principles is proposed that is both standardised internationally and able to be tailored to the diverse contexts of Indigenous peoples. INTERPRETATION: IDS is emergent in Australia and there is a clear need to establish an agreed set of International IDS principles and a framework for their operationalisation and contextualisation across diverse Indigenous communities and contexts. FUNDING: This research project is funded through an Australian Research Council (ARC) Discovery Grant from 2017 to 2022. The National Drug and Alcohol Research Centre (NDARC) is funded by the Australian Government Department of Health. The 1st author (ST) is supported by a scholarship co-funded by NDARC and the Lowitja Institute.