Genomics and inclusion of Indigenous peoples in high income countries.

Genomics research related to Indigenous people has been at worst exploitative and at best, retrospectively on a journey to improve effective engagement of Indigenous individuals and communities. Genomics can positively impact all stages of clinical management, and to improve genomic effectiveness researchers aggregate genomic data from diverse global sub-populations, such as shared ancestry groupings, as people within these groupings will have a greater proportion of shared DNA traits. While genomics is already being used worldwide to improve lives, its utility and effectiveness has not been maximized for individuals with Indigenous ancestry. Several large datasets of human genetic variation have been made publicly available, of which the most widely used is the Genome Aggregation Database (gnomAD), but none of these databases currently contain any population-specific data for Indigenous populations. There are many reasons why Indigenous people have been largely left out of genomics research and, because of this, miss out on the benefits offered. It is also clear that if research is to be effective, it needs to be done 'with' and not 'on' Indigenous communities. This systematic review of the literature regarding Indigenous peoples (in high income countries) and genomics aims to review the existing literature and identify areas of strength and weakness in study design and conduct, focusing on the effectiveness of Indigenous community engagement.

Does breast cancer policy meet the needs of Aboriginal and Torres Strait Islander women in Australia? a review.

OBJECTIVE: To evaluate if existing Australian public policy related to screening, diagnosis, treatment and follow up care for breast cancer addresses the needs of and outcomes for Indigenous1 women? METHODS: This review of policy employed a modified Delphi method via an online panel of experts (n = 13), who were purposively recruited according to experience and expertise. A series of online meetings and online surveys were used for data collection. The aims of the study were to: Identify all existing and current breast cancer policy in Australia;  Analyse the extent to which consideration of Indigenous peoples is included in the development, design and implementation of the policy; and Identify policy gaps and make recommendations as to how they could be addressed. The policies were evaluated using 'A Guide to Evaluation under the Indigenous Evaluation Strategy, 2020'. RESULTS: A list of current breast cancer policies (n = 7) was agreed and analysed. Five draft recommendations to improve breast cancer outcomes for Indigenous women were developed and refined by the panel. CONCLUSIONS: Current breast cancer policy in Australia does not address the needs of Indigenous women and requires change to improve outcomes.

"Everyone needs a Deb": what Australian indigenous women say about breast cancer screening and treatment services.

BACKGROUND: Breast cancer continues to be the second most diagnosed cancer overall and the most diagnosed cancer for women in Australia. While mortality rates overall have declined in recent years, Indigenous women continue to be diagnosed at more marginal rates (0.9 times) and are more likely to die (1.2 times). The literature provides a myriad of reasons for this; however, the voices of Indigenous women are largely absent. This study sets out to understand what is happening from the perspectives of Australian Indigenous women with a view to charting culturally safer pathways that improve participation in screening and treatment by Indigenous women. METHODS: This co-design study was conducted using semi-structured, in-depth interviews and focus group discussions. Recruitment of study participants was via snowball sampling. Participants were subsequently consented into the study through the Aboriginal Health Service and the research team. Interviews were audio recorded and transcribed verbatim, and data coded in NVivo12 using inductive thematic analysis. RESULTS: A total of 21 Indigenous women and 14 health service providers were interviewed predominantly from the same regional/rural area in NSW, with a small proportion from other states in Australia. Six major themes were identified: Access, Awareness, Community and Family, Lack of control, Negative feelings and associations and Role of services. CONCLUSION: To improve access and participation of Indigenous women and ultimately improve mortality rates, breast cancer services must explicitly address cultural and community needs.

Community based programs to improve the oral health of Australian Indigenous adolescents: a systematic review and recommendations to guide future strategies.

BACKGROUND: To review the international literature on community-based interventions aiming to improve the oral health of Indigenous adolescents and identify which demonstrate a positive impact. METHODS: Data sources were MEDLINE, EMBASE, CINAHL, SCOPUS, the COCHRANE library and the Australian Indigenous HealthInfoNet. Articles were included where they: were published in English from 1990 onwards; described oral health outcomes for Indigenous adolescents aged 10 to 19 years; implemented a community based oral health intervention. The Quality Assessment Tool for Quantitative Studies from the Effective Public Health Practice Project was applied. RESULTS: Nine studies met inclusion criteria; two rated strong in quality; only one study was conducted with an urban community; five reported moderate community engagement. Five intervention strategies were identified, and schools were the most common setting reported. Statistically significant improvements were described in eight studies with the most frequently reported outcome being change in decayed missing or filled teeth. CONCLUSIONS: Few good quality peer reviewed international studies of community-based oral health interventions which address the needs of Indigenous adolescents exist. Studies must include strong Indigenous community leadership and governance at all stages of the research, adopt participatory action-based research approaches, and are required in urban communities.

Aboriginal dental assistants can safely apply fluoride varnish in regional, rural and remote primary schools in New South Wales, Australia.

PROBLEM: There are significant inequalities in oral health status between Aboriginal and non-Aboriginal children in Australia, particularly where the children have insufficient access to various forms of fluoride. There has been a growing interest in seeing fluoride varnish programs used more widely for Aboriginal children due to proven effectiveness. Despite this, there has been limited scale-up of these programs in Australia. This study investigates the feasibility of using Aboriginal dental assistants to provide regular fluoride varnish applications for Aboriginal children in the primary school setting. DESIGN: A mixed-methods approach including auditing the number of Aboriginal dental assistants were trained and then approved by the NSW Chief Health Officer to apply fluoride varnish, and collection and reporting of participant data on the each of the fluoride varnish days in the local patient management system. SETTING: Six Aboriginal Community Controlled Health Services from regional NSW were invited to participate in the study. They also nominated a primary school and an Aboriginal dental assistant to participate in the study. KEY MEASURES FOR IMPROVEMENT: Data were obtained from four 'fluoride varnish days' held at the schools over a 12-month period between December 2017 and December 2018. The number of Aboriginal dental assistants were trained and then approved by the NSW Chief Health Officer to apply fluoride varnish is also reported. STRATEGIES FOR CHANGE: In total, 8 Aboriginal dental assistants were trained to apply fluoride varnish during the study. Overall, students participating in the study received three or more fluoride varnish applications. EFFECTS OF CHANGE: Results showed that Aboriginal dental assistants are able to safely and effectively apply fluoride varnish in a school setting with remote supervision. LESSONS LEARNT: This program can be scaled at the state level in NSW, and this could provide the basis for a nationally consistent program. Initial discussions have been held with several jurisdictions to lead this process via the Australian Health Ministers Advisory Council (AHMAC) based on the results of this study and the support of key stakeholders. The Poche Centre as part of its scale-up planning for the Fluoride Varnish Program is examining the feasibility of including the apply fluoride varnish skillset in its existing Aboriginal Dental Assistant Scholarship Program.

Co-designing policy with Aboriginal and Torres Strait Islander peoples: a protocol.

Objectives and importance of study: In the public service context, co-design is novel and ever-expanding. Co-design brings together decision-makers and people impacted by a problem to unpack the problem and design solutions together. Government agencies are increasingly adopting co-design to understand and meet the unique needs of priority populations. While the literature illustrates a progressive uptake of co-design in service delivery, there is little evidence of co-design in policy development. We propose a qualitative study protocol to explore and synthesise the evidence (literary, experiential and theoretical) of co-design in public policy. This can inform a framework to guide policymakers who co-design health policy with Aboriginal and Torres Strait Islander people. Methods: The study design is informed by a critical qualitative approach that comprises five successive stages. The study commences with the set-up of a co-design brains trust (CBT), comprising people with lived experience of being Aboriginal and Torres Strait Islander who have either co-designed with public agencies and/or have health policymaking expertise (stage 1) The brains trust will play a key role in guiding the protocol's methodology, data collection, reporting and co-designing a 'Version 1' framework to guide policymakers in co-designing health policy with Aboriginal and Torres Strait Islander people (the framework). Two realist evaluations will explore co-design in health policy settings to understand how co-design works for whom, under what circumstances, and how (stages 2 and 3) The findings of the realist evaluations will guide the CBT in developing the framework (stage 4). A process evaluation of the CBT setup and framework development will assess the degree to which the CBT achieved its intended objectives (stage 5). Conclusion: The proposed study will produce much-needed evidence to guide policymakers to share decision-making power and privilege the voices of Aboriginal and Torres Strait Islander people when co-designing health policy. Learnings from this translational research will be shared via the CBT, academic papers, conference presentations and policy briefings.

The Effectiveness of Clinician-Led Community-Based Group Exercise Interventions on Health Outcomes in Adults with Type 2 Diabetes Mellitus: A Systematic Review and Meta-Analysis.

This systematic review and meta-analysis evaluated the combined effects of clinician-led and community-based group exercise interventions on a range of health outcomes in adults with type 2 diabetes mellitus. Our literature search spanned Medline, Scopus, PubMed, Embase, and CINAHL databases, focusing on peer-reviewed studies published between January 2003 and January 2023. We included studies involving participants aged 18 years and older and articles published in English, resulting in a dataset of eight studies with 938 participants. Spanning eight peer-reviewed studies with 938 participants, the analysis focused on the interventions' impact on glycemic control, physical fitness, and anthropometric and hematological measurements. Outcomes related to physical fitness, assessed through the six-minute walk test, the 30 s sit-to-stand test, and the chair sit-and-reach test, were extracted from five studies, all of which reported improvements. Anthropometric outcomes from seven studies highlighted positive changes in waist circumference and diastolic blood pressure; however, measures such as body mass index, systolic blood pressure, weight, and resting heart rate did not exhibit significant changes. Hematological outcomes, reviewed in four studies, showed significant improvements in fasting blood glucose, triglycerides, and total cholesterol, with glycemic control evidenced by reductions in HbA1c levels, yet LDL and HDL cholesterol levels remained unaffected. Ten of the fifteen outcome measures assessed showed significant enhancement, indicating that the intervention strategies implemented may offer substantial health benefits for managing key type 2 diabetes mellitus-related health parameters. These findings in combination with further research, could inform the refinement of physical activity guidelines for individuals with type 2 diabetes mellitus, advocating for supervised group exercise in community settings.

The Effect of Community-Based Exercise on Health Outcomes for Indigenous Peoples with Type 2 Diabetes: A Systematic Review.

Indigenous peoples globally experience a high burden of type 2 diabetes in comparison to non-Indigenous peoples. While community-based exercise interventions designed for type 2 diabetes (T2D) management have garnered success in non-Indigenous populations, they likely require adjustments to meet the needs of Indigenous people. This systematic review aims to determine if health outcomes in Indigenous peoples with T2D could be improved by community-based exercise programmes and the features of those programmes that best meet their needs. The CINAHL, Embase, Informit Indigenous Collection, Medline, PubMed, Scopus, SportDiscus, and Web of Science databases have been searched to identify peer-reviewed literature with original outcome data that report on the health effects of community-based exercise interventions for the management of T2D among Indigenous peoples. The Mixed Methods Appraisal Tool and Indigenous Community Engagement Tool were implemented to assess methodological quality. Three moderate-to-high-quality studies were selected for review, including participants of Polynesian or Native American Zuni Indian descent. Results indicated positive effects of group exercise on glycated haemoglobin (HbA1c), body mass index, body weight, total cholesterol, blood pressure, quality of life, and patient activation levels in high-adhering participants. This review concludes that community-based exercise interventions may improve health outcomes for Indigenous adults with T2D when conducted with strong community engagement.

Improving Breast Cancer Outcomes for Indigenous Women in Australia.

In Australia, the incidence rate of breast cancer is lower in Indigenous* women than non-Indigenous women; however, the mortality rate is higher, with Indigenous women 1.2 times more likely to die from the disease. This paper provides practical and achievable solutions to improve health outcomes for Indigenous women with breast cancer in Australia. This research employed the Context-Mechanism-Outcome (CMO) framework to reveal potential mechanisms and contextual factors that influence breast cancer outcomes for Indigenous women, stratified into multiple levels, namely, micro (interpersonal), meso (systemic) and macro (policy) levels. The CMO framework allowed us to interpret evidence regarding Indigenous women and breast cancer and provides nine practical ways to improve health outcomes and survival rates.

Aboriginal and Torres Strait Islander peoples.

BackgroundIn Australia, medications can be prescribed by medical practitioners, dentists, nurses, and dispensed by pharmacists. Until recently, pharmacists have been limited to prescribing Schedule 2 and 3 medications, and optometrists, podiatrists, and nurse practitioners can prescribe medications under their scope of practice in some areas of Australia. Recently, the New South Wales (NSW) Government initiated a trial where approved pharmacists in NSW and Australian Capital Territory have an expanded scope of practice to prescribe further medications for urinary tract infections, dermatology conditions (mild to moderate atopic dermatitis, herpes zoster (shingles), impetigo, and mild plaque psoriasis), and resupply of contraceptives. This protocol is for a sub-study of the larger research trial and will explore the perspectives of Aboriginal and Torres Strait Islander peoples and communities including clinicians, healthcare services, and community members about the expanded scope of pharmacists' practice.Methods and analysisYarning circles (group) and individual yarns (semi-structured interviews) will be conducted with leaders, clinicians working with Aboriginal and Torres Strait Islander peoples (general practitioners, nurses, Aboriginal health workers, community pharmacists), Aboriginal Elders, and community members to understand perspectives of the risks, benefits, opportunities, and issues associated with pharmacists prescribing for these specific conditions. Ethics approval was obtained through the Aboriginal Health and Medical Research Council of NSW.ConclusionThe findings of this sub-study will clarify Aboriginal and Torres Strait Islander peoples' unique perspectives, including perception of risks and opportunities.

Wearables for early detection of atrial fibrillation and timely referral for Indigenous people ≥55 years: mixed-methods protocol.

INTRODUCTION: Digital health technologies have the potential to provide cost-effective care to remote and underserved populations. To realise this potential, research must involve people not traditionally included. No research focuses on the acceptability and feasibility of older Indigenous people using wearables for early atrial fibrillation (AF) detection. This protocol compares digital augmentation against standard practice to detect AF, evaluate heart health self-efficacy and health literacy changes and identify barriers in collaboration with Aboriginal Community Controlled Health Organisations. It will establish a framework for implementing culturally safe and acceptable wearable programmes for detecting and managing AF in Indigenous adults ≥55 years and older. METHODS: This mixed-methods research will use the Rambaldini model of collective impact, a user-centred, co-design methodology and yarning circles, a recognised Indigenous research methodology to assess the cultural safety, acceptability, feasibility and efficacy of incorporating wearables into standard care for early AF detection. ANALYSIS: Qualitative data will be analysed to create composite descriptions of participants' experiences and perspectives related to comfort, cultural safety, convenience, confidence, family reactions and concerns. Quantitative device data will be extracted and analysed via Statistical Product and Service Solutions (SPSS). CONCLUSION: Prioritising perspectives of older Indigenous adults on using wearables for detecting and monitoring cardiovascular disease will ensure that the findings are effective, relevant and acceptable to those impacted. ETHICS AND DISSEMINATION: Findings will be published in open-source peer-reviewed journals, shared at professional conferences, described in lay terms and made available to the public. The AHMRC HREC Reference Number approved 1135/15.

Comparison of Study Quality as Determined by Standard Research and Community Engagement Metrics: A Pilot Study on Breast Cancer Research in Urban, Rural, and Remote Indigenous Communities.

The purpose of this review is to compare research evaluation tools to determine whether the tools typically used for assessing the quality of research adequately address issues of Indigenous health and culture, particularly when the studies are intended to benefit Indigenous peoples in urban, regional, rural, and remote settings. Our previously published systematic review evaluated studies about breast cancer using a modified Indigenous community engagement tool (CET). In this study, we evaluated the same studies using two commonly used tools: the Critical Appraisal Skills Programme (CASP) for qualitative research; and the Effective Public Health Practice Project (EPHPP) for quantitative research. The results were then compared to ascertain whether there was alignment between performances in terms of engagement and the CASP/EPHPP metrics. Of the 15 papers, 3 papers scored weakly on both metrics, and are therefore the least likely to offer reliable findings, while 2 papers scored strongly on both metrics, and are therefore the most likely to offer reliable findings. Beyond this summation, it was clear that the results did not align and, therefore, could not be used interchangeably when applied to research findings intended to benefit Indigenous peoples. There does not appear to be a pattern in the relationship between the reliability of the studies and the study settings. In order to address disparities in health outcomes, we must assess research through a typical research quality and cultural engagement and settings lens, ensuring that there is rigour in all aspects of the studies.

Applying collective impact in Aboriginal health services and research: three case studies tell an important story.

BACKGROUND: Co-design is the latest buzzword in healthcare services and research and is ubiquitous in Australian funding grants and policy documents. There are no standards for what constitutes co-design and it is often confused with less collaborative processes such as consultation. Collective impact is a co-design tool used for complex and entrenched problems. It uses a systematic approach and requires power and resource sharing. We applied collective impact to three research projects with Aboriginal communities. This paper explores how collective impact can enhance participation and outcomes in healthcare services and research. METHODS: We evaluated the collective impact process and outcomes in three translational health research projects with Aboriginal people and communities using a case study approach. We adapted the model using an iterative co-design approach. RESULTS: We adapted the collective impact model in three ways: 1) replaced the precondition of 'problems that are urgent' with 'problems that are complex and entrenched'; 2) added to the 'common agenda' the requirement to establish a planned exit and long-term sustainability strategy from the outset; and 3) added the delivery of a public policy outcome as a result of the collective impact process. CONCLUSIONS: Aboriginal and Torres Strait Islander health is an important public policy priority that requires new and different approaches to service delivery and research. This study adapted the collective impact approach and developed the Rambaldini model through three translational health research case studies and found that a modified collective impact approach is an effective tool for engagement and outcomes.

Improving breast cancer outcomes for Aboriginal women: a mixed-methods study protocol.

INTRODUCTION: Breast cancer is the most commonly diagnosed cancer affecting Australian women, and the second highest cause of cancer death in Australian women. While the incidence of breast cancer is lower in Aboriginal women than non-Aboriginal women, the mortality rate for Aboriginal women is higher, with Aboriginal women 1.2 times more likely to die from the disease. In New South Wales, Aboriginal women are 69% more likely to die from their breast cancer than non-Aboriginal women.Co-design is a research method recognised to enhance collaboration between those doing the research and those impacted by the research; which when used with Aboriginal communities, ensures research and services are relevant, culturally competent and empowers communities as co-researchers. We report the development of a new protocol using co-design methods to improve breast cancer outcomes for Aboriginal women. METHODS AND ANALYSIS: Through a Community Mapping Project in 2018, we co-designed an iterative quantitative and qualitative study consisting of five phases. In Phase 1, we will establish a governance framework. In Phase 2, we will provide information to community members regarding the modified parts of the screening, diagnosis, treatment and follow-up processes and invite them to partake. In Phase 3, the research team will collect data on the outcomes of the modified processes and the outcomes for the women who have and have not participated. The data shall be analysed quantitatively and thematically in Phase 4 with Aboriginal community representatives and reported back to community. Lastly, in Phase 5, we evaluate the co-design process and adapt our protocol for use in partnership with other communities. ETHICS AND DISSEMINATION: This study has ethics approval of the Aboriginal Health and Medical Research Council ref:1525/19. The findings will be published in the literature, presented at conferences and short summaries will be issued via social media.

Availability of drinking water in rural and remote communities in New South Wales, Australia.

Many rural communities in New South Wales (NSW), Australia, have poor-quality water supplies. The lack of a palatable alternative increases the risk of the high consumption of sugar-sweetened beverages, a significant contributor to adverse health outcomes. This disproportionately effects Aboriginal people living in these towns, who are also profoundly affected by the social determinants of health. Therefore, examining health inequalities linked to water access is important. This study investigated the availability of drinking water fountains in rural and remote communities in NSW. Telephone interviewer-assisted surveys were conducted with 32 representatives from local government councils or Local Aboriginal Land Councils in NSW from communities with a population of <5000 and an Aboriginal population of at least 3%. The results were analysed descriptively. Towns and communities with a higher population of Aboriginal people and lower median weekly income were less likely to have access to free refrigerated and filtered water within the community or at local schools compared with towns and communities with a lower Aboriginal population and higher median weekly income. The availability of free, clean and refrigerated water in rural and remote communities is critical to reducing the consumption of sugar-sweetened beverages and the promotion of water as the preferred drink.

"No One Manages It; We Just Sign Them Up and Do It": A Whole System Analysis of Access to Healthcare in One Remote Australian Community.

OBJECTIVE: To assess the accessibility, availability and utilisation of a comprehensive range of community-based healthcare services for Aboriginal people and describe contributing factors to providing effective healthcare services from the provider perspective. SETTING: A remote community in New South Wales, Australia. PARTICIPANTS: Aboriginal and non-Aboriginal health and education professionals performing various roles in healthcare provision in the community. DESIGN: Case study. METHODOLOGY: The study was co-designed with the community. A mixed-methods methodology was utilised. Data were gathered through structured interviews. Descriptive statistics were used to analyse the availability of 40 health services in the community, whilst quotations from the qualitative research were used to provide context for the quantitative findings. RESULTS: Service availability was mapped for 40 primary, specialised, and allied health services. Three key themes emerged from the analysis: (1) there are instances of both underservicing and overservicing which give insight into systemic barriers to interagency cooperation; (2) nurses, community health workers, Aboriginal health workers, teachers, and administration staff have an invaluable role in healthcare and improving patient access to health services and could be better supported through further funding and opportunities for specialised training; and (3) visiting and telehealth services are critical components of the system that must be linked to existing community-led primary care services. CONCLUSION: The study identified factors influencing service availability, accessibility and interagency cooperation in remote healthcare services and systems that can be used to guide future service and system planning and resourcing.

What Is the Evidence Globally for Culturally Safe Strategies to Improve Breast Cancer Outcomes for Indigenous Women in High Income Countries? A Systematic Review.

The aim was to systematically assess the evidence on whether cultural safety affects breast cancer outcomes with regards to care for Indigenous women in high income countries. We conducted a systematic review in accordance with PRISMA guidelines of peer-reviewed articles in Medline, EMBASE, CINAHL, Scopus, Web of Science, Proquest Sociology and Informit Rural health database and Indigenous collection databases. Key inclusion criteria were: adult female patients with breast cancer; high income country setting; outcome measure, including screening, diagnosis, treatment and follow up care. A total of 15 were selected. We developed a Community Engagement assessment tool in consultation with aboriginal researchers, based on the National Health and Medical Research Councils' community engagement guidelines, against which studies were appraised. This novel element allowed us to evaluate the literature from a new and highly relevant perspective. Thematic analysis of all 15 studies was also undertaken. Despite limited literature there are evidence-based strategies that are likely to improve outcomes for Indigenous women with breast cancer in high income countries and indicate that culture makes a positive difference. It is also clear that strong Indigenous community leadership and governance at all stages of the research including design is an imperative for feasibility.

Enabling Aboriginal dental assistants to apply fluoride varnish for school children in communities with a high Aboriginal population in New South Wales, Australia: a study protocol for a feasibility study.

BACKGROUND: Australian Aboriginal children experience high levels of dental caries (tooth decay) and are less likely to access preventive dental health services. High-strength fluoride varnish has been shown to reduce the incidence of dental caries and is commonly used in community-based preventive dental health service programs. In New South Wales, Australia, the application of fluoride varnish is restricted to dental and medical professionals. This is problematic in communities with a high Aboriginal population and limited access to oral health services, contributing to the increased risk of developing dental caries in Aboriginal children. Dental assistants are essential members of the oral health team; however, they do not have a defined scope of practice in Australia. Other countries have created formal scopes of practice for dental assistants to include the application of fluoride varnish. This protocol presents a pathway for qualified Aboriginal dental assistants to undertake additional training to legally apply fluoride varnish in New South Wales. The primary objective of this study will be to evaluate the feasibility and acceptability of utilising Aboriginal dental assistants to apply fluoride varnish to Aboriginal children in a school setting at regular 3-month intervals. METHODS: Six schools across New South Wales (NSW) that enrol at least 12% Aboriginal children will be invited to participate in the 12-month study. Aboriginal children aged 5-12 years enrolled in these schools will be enrolled in the study. Six Aboriginal dental assistants will undertake training to apply fluoride varnish. Fluoride varnish (Duraphat) will be applied at 3-month intervals by the dental assistants to the teeth using a small brush. An evaluation will be undertaken to determine the feasibility and cost-effectiveness of this innovative approach. This study protocol has been approved by the NSW Aboriginal Health and Medical Research Council and the NSW State Education Research Application Process. DISCUSSION: A qualified Aboriginal dental assistant workforce in NSW (or Australia) legally approved to apply fluoride varnish may increase the sustainability and scalability of fluoride varnish programs and improve the oral health of Aboriginal children in Australia. TRIAL REGISTRATION: ISRCTN26746753.