Screening for latent tuberculosis infection by an Aboriginal Community Controlled Health Service, New South Wales, Australia, 2015

Objective: Ongoing transmission of tuberculosis (TB) continues in Indigenous communities in New South Wales (NSW), Australia. In a pilot project, a Public Health Unit TB team partnered with an Aboriginal Community Controlled Health Service (ACCHS) in a community with a cluster of TB to augment screening for latent TB infection (LTBI) using interferon-gamma release assay (IGRA). This study examined screening data and programme outcomes at 12 months post hoc to advise practice and policy formulation. Methods: We conducted a retrospective, cross-sectional analysis of demographic and clinical data of ACCHS patients, stratified by IGRA testing status. Differences in sex and age distribution between the groups and cases of a genetically and epidemiologically linked TB cluster in Aboriginal people in NSW were assessed using non-parametric tests. Results: Of 2019 Aboriginal and Torres Strait Islander people seen by general practitioners during the study period, 135 (6.7%) participated in the screening. Twenty-four (17.8%) participants were IGRA positive. One person was diagnosed with active TB. Twelve participants received a chest X-ray at the time of the positive test, and six participants had an additional chest X-ray within 12 months. None commenced preventive treatment for LTBI. Discussion: ACCHS screening for LTBI reached individuals in the age group most commonly affected by TB in these Aboriginal communities. No conclusions can be made regarding the population prevalence due to the low screening rate. Further strategies need to be developed to increase appropriate follow-up and preventive treatment

VOICE–Validating Outcomes by Including Consumer Experience: A Study Protocol to Develop a Patient Reported Experience Measure for Aboriginal and Torres Strait Islander Peoples Accessing Primary Health Care

Aboriginal and Torres Strait Islander peoples’ (hereafter respectfully referred to as Indigenous Australians) experiences of health care are shaped by historical, social and cultural factors, with cultural security critical to effective care provision and engagement between services and community. Positive patient experiences are associated with better health outcomes. Consequently, it is an accreditation requirement that primary health care (PHC) services must formally gather and respond to patient feedback. However, currently available patient feedback tools were not developed with Indigenous Australians, and do not reflect their values and world views. Existing tools do not capture important experiences of care of Indigenous Australians in PHC settings, nor return information that assists services to improve care. Consistent with the principles of Indigenous Data Sovereignty, we will co-design and validate an Indigenous-specific Patient Reported Experience Measure (PREM) that produces data by and for community, suitable for use in quality improvement in comprehensive PHC services. This paper presents the protocol of the study, outlining the rationale, methodologies and associated activities that are being applied in developing the PREM. Briefly, guided by an Aboriginal and Torres Strait Islander Advisory Group, our team of Indigenous and non-Indigenous researchers, service providers and policy makers will use a combination of Indigenous methodologies, participatory, and traditional western techniques for scale development. We will engage PHC service staff and communities in eight selected sites across remote, regional, and metropolitan communities in Australia for iterative cycles of data collection and feedback throughout the research process. Yarning Circles with community members will identify core concepts to develop an “Experience of Care Framework”, which will be used to develop items for the PREM. Staff members will be interviewed regarding desirable characteristics and feasibility considerations for the PREM. The PREM will undergo cognitive and psychometric testing

Do Dose Administration Aids Support Medication Adherence for Aboriginal and Torres Strait Islander Peoples? An exploration of patients’ perspectives, experiences and use of Dose Administration Aids on the North Coast of New South Wales

Background Aboriginal and Torres Strait Islander peoples have a shorter life expectancy than that of non-Indigenous Australians (2). It has been estimated that 80% of the disparity in life expectancy is due to chronic diseases that increase morbidity and shorten life (3). In 2013, 33% of Aboriginal peoples reported they had three or more chronic health conditions compared to 23% of Australians who reported two or more chronic conditions (2, 4). The higher prevalence of multiple chronic diseases in the Aboriginal and Torres Strait Islander population than in the non-Indigenous population is often associated with complex medication regimens. This study, which began in 2014, was undertaken with Aboriginal peoples on the North Coast of New South Wales (NSW). The study was prompted by the inclusion of DAAs on the list of approved aids provided through the Indigenous Team Care Arrangement program at no cost to Aboriginal patients with chronic disease. The researcher was managing the program in this region. Literature searches undertaken as part of the thesis confirmed that there have been no studies relating to the provision of DAAs at no cost to Aboriginal patients, the effects of these DAAs on medication management, or the experience of using them from the patient’s perspective. Aims The goal of the study was to evaluate the effectiveness of the provision of DAAs for Aboriginal peoples, and to better understand how these affect individuals and their medication management. The research questions for this study were: • Does the provision of DAAs to Aboriginal peoples on the North Coast of NSW support medication-taking behaviours, and if so, how does it support them? • What are the patients’ experiences of using DAAs? Methods This was a mixed-methods study, that included quantitative and qualitative data collected from a questionnaire, qualitative data collected from a series of three focus groups, and a scoping study of the literature. Data were analysed at three time points: at the completion of the initial 10 questionnaires at which time a decision was to add focus groups to the data collection; as a part of the focus groups, a quick review of the questionnaires, which informed the questions asked of participants in groups; and then a cumulative analysis of results of all the questionnaires and focus group responses. Results A total of 30 Aboriginal participants were included in the study. Participants lived in the area ranging from Tweed Heads to Port Macquarie. The initial ten participants were recruited while they signed up for participation in a program that provided access to DAAs at no charge. Twenty additional participants were recruited through Aboriginal Community Controlled Health Services (ACCHSs). Twenty-six of the 30 respondents completed the questionnaire, and 20 participated in the focus groups. There was equal participation of males and females who identified as Aboriginal and Torres Strait Islander peoples, with the median age of respondents being 61.9 years. Participants felt they were managing their medications well. The study noted that 45% of focus group participants (9/20) missed taking medications regularly. Reasons for this included difficulty in travelling and taking medications, difficulties in managing medications when they were busy or late, and decisions made to not take medication from time to time. Most participants reported positive feelings towards the use of the DAAs and felt they helped them manage their medications. Some of the participants in this study who did not use DAAs (n=4), for various reasons, had their own reminder systems they developed themselves to ensure they took their medications as prescribed. The study found that medication regimens of participants were varied and potentially complex, and that some participants were taking up to 23 individual doses of oral medications per day, with insulin injections as an addition to their regimens. Participants recognised that DAAs were important to them and their medication- taking. Removal of funding for the provision of these aids, currently provided at no cost, would create financial issues for over half of the participants. Additionally, the provision of DAAs provided regular opportunities for pharmacists to interact with patients and/or their carers, supporting improved therapeutic relationships and possibly better health outcomes. Conclusion Dose Administration Aids were an important tool for most Aboriginal patients who participated in the study. Managing up to 23 doses of medication that may be taken between two and six times per day is difficult. Dose Administration Aids provide in- home support for patients to ensure that they are complying with their medication regimens. For the participants from this small study, removal of government supports and subsidies that provide DAAs to Aboriginal peoples would have a negative effect on their ability to access them. This in turn may affect the medication-taking behaviours of Aboriginal peoples, and potentially negatively affect their long- term health outcomes. Further study regarding the Aboriginal patient experience of the use of DAAs, over a period tracking medication adherence, is proposed

Do dose administration aids support medication adherence for Aboriginal and Torres Strait Islander peoples? An exploration of patients\u27 perspectives, experiences and use on the North Coast of New South Wales

INTRODUCTION: Management of medication regimens and improvement of medication-taking behaviours may require various levels of support, education, engagement and barrier reduction from health services and or pharmacists. The use of dose administration aids (DAAs) may improve medication management for some people, and therefore may facilitate positive health benefits. This Australian study was informed by a literature review that found there was a dearth of data about Aboriginal and Torres Strait Islander peoples\u27 use of DAAs. This study therefore aimed to understand the experiences of Aboriginal and Torres Strait Islander people living on the North Coast of New South Wales with DAAs and if the provision of DAAs supported medication-taking behaviours. METHODS: A mixed-methods approach that included data collected from a questionnaire and a series of focus groups was used in this study. Analysis was completed at three stages throughout the study. RESULTS: A total of 30 Aboriginal participants participated in the study. Participants lived in the area ranging from Tweed Heads to Port Macquarie. Twenty-six participants completed the questionnaire and 20 participated in the focus groups; 16 completed both. Participants felt they were managing their medications well. The study noted that, despite this assessment, 45% of focus group participants (9/20) missed taking medications regularly for various reasons. The medication regimens of participants were varied and potentially complex; for example, some participants were taking up to 23 individual doses of oral medications and insulin injections daily as a part of these regimens. Participants described their use of DAAs and how they supported their medication-taking both functionally and financially. Most participants reported that DAAs helped them manage their medications. The weekly or fortnightly provision of DAAs provided regular opportunities for pharmacists to interact with patients and/or their caregivers, supporting improved therapeutic relationships and possibly better health outcomes. CONCLUSION: DAAs were an important tool for improving medication management for most study participants. DAAs provided affordable and appropriate in-home support for patients to follow prescribed medication regimens. For the participants from this small study who used DAAs and viewed them as an important tool for managing medications, removal of financial subsidies that assist the provision of DAAs to Aboriginal and Torres Strait Islander peoples would have a negative effect on their ability to access them. This in turn may affect their medication-taking behaviours, potentially negatively affecting their long-term health outcomes. Further study regarding the Aboriginal and Torres Strait Islander patient experience of the use of DAAs over a longer period tracking medication adherence, and for a larger cohort of Aboriginal and Torres Strait Islander people, would be beneficial to understanding experience of use of DAAs on a wider scale

Growing Our Own Rural, Remote and Aboriginal Health Workforce: Contributions made, approaches taken and lessons learnt by three rural Australian academic health departments

Aims: This paper describes the investments made, approaches taken and lessons learnt by three rural Australian academic health departments engaged in the delivery of the Health Career Academy Program (HCAP). The program seeks to address the under-representation of rural, remote and Aboriginal populations within Australia\u27s health workforce. Context: Significant resources are directed towards rural practice exposure for metropolitan health students to address workforce shortages. Fewer resources are directed towards health career strategies that focus on the earlier engagement of rural, remote and Aboriginal secondary school students, those in Years 7–10. Best practice career development principles highlight the importance of earlier engagement in the promotion of health career aspirations and in influencing secondary school student career intentions and uptake of health professions. Approach: This paper describes: delivery contexts; the theory and evidence that has informed the HCAP; program design, adaptability and scalability; program focus on priming the rural health career pipeline; program alignment to best practice career development principles; enablers and barriers confronted in program delivery, and lessons learnt to inform rural health workforce policy and resourcing. Conclusion: There is a need to invest in programs that seek to attract rural, remote and Aboriginal secondary school students to health professions if Australia is to develop a sustainable rural health workforce. A failure to invest earlier undermines opportunities to engage diverse and aspiring youth in Australia\u27s health workforce. Program contributions, approaches and lessons learnt can inform the work of other agencies seeking to include these populations in health career initiatives

Producing knowledge together: a participatory approach to synthesising research across a large-scale collaboration in Aboriginal and Torres Strait Islander health

Background: Despite that stakeholder participation in evidence synthesis could result in more useful outcomes, there are few examples of processes that actively involve them in synthesis work. Techniques are needed that engage diverse stakeholders as equal partners in knowledge co-production. The aims of this paper are to describe an innovative participatory process of synthesising a large body of academic research products and compare the findings of the participatory process against two traditional approaches to synthesis: a rapid review and a structured review. Methods: First, a rapid synthesis of all research outputs (n = 86) was conducted by researchers with in-depth knowledge of the collaboration’s research. Second, a team of researchers and service providers conducted a structured synthesis of seventy-eight peer-reviewed articles and reports generated by the collaboration. Fifty-five publications were brought forward for further synthesis in part three, a facilitated participatory synthesis. Finally, we explored the value added by the participatory method by comparing findings generated across the three synthesis approaches. Results: Twelve researchers and 11 service providers/policy partners—8 self-identified as Aboriginal and/or Torres Strait Islander—participated in two facilitated workshops (totalling 4 h). Workshop activities engaged participants in reviewing publication summaries, identifying key findings, and evoked review, discussion and refinement. The process explicitly linked experiential knowledge to citations of academic research, clearly connecting the two knowledge types. In comparing the findings generated across all three methods we found mostly consistencies; the few discrepancies did not contradict but gave deeper insights into statements created by the other methods. The participatory synthesis generated the most, detailed, and unique findings, and contextual insights about the relevance of the key messages for practice. Conclusion: The participatory synthesis engaged stakeholders with diverse backgrounds and skillsets in synthesising a large body of evidence in a relatively short time. The participatory approach produced findings comparable to traditional synthesis methods while extending knowledge and identifying lessons most relevant for the participants who, ultimately, are the end users of the research. This process will interest other large-scale research collaborations seeking to engage stakeholders in evidence synthesis

VOICE–Validating Outcomes by Including Consumer Experience: A Study Protocol to Develop a Patient Reported Experience Measure for Aboriginal and Torres Strait Islander Peoples Accessing Primary Health Care

Aboriginal and Torres Strait Islander peoples’ (hereafter respectfully referred to as Indigenous Australians) experiences of health care are shaped by historical, social and cultural factors, with cultural security critical to effective care provision and engagement between services and community. Positive patient experiences are associated with better health outcomes. Consequently, it is an accreditation requirement that primary health care (PHC) services must formally gather and respond to patient feedback. However, currently available patient feedback tools were not developed with Indigenous Australians, and do not reflect their values and world views. Existing tools do not capture important experiences of care of Indigenous Australians in PHC settings, nor return information that assists services to improve care. Consistent with the principles of Indigenous Data Sovereignty, we will co-design and validate an Indigenous-specific Patient Reported Experience Measure (PREM) that produces data by and for community, suitable for use in quality improvement in comprehensive PHC services. This paper presents the protocol of the study, outlining the rationale, methodologies and associated activities that are being applied in developing the PREM. Briefly, guided by an Aboriginal and Torres Strait Islander Advisory Group, our team of Indigenous and non-Indigenous researchers, service providers and policy makers will use a combination of Indigenous methodologies, participatory, and traditional western techniques for scale development. We will engage PHC service staff and communities in eight selected sites across remote, regional, and metropolitan communities in Australia for iterative cycles of data collection and feedback throughout the research process. Yarning Circles with community members will identify core concepts to develop an “Experience of Care Framework”, which will be used to develop items for the PREM. Staff members will be interviewed regarding desirable characteristics and feasibility considerations for the PREM. The PREM will undergo cognitive and psychometric testing

VOICE–Validating Outcomes by Including Consumer Experience: A Study Protocol to Develop a Patient Reported Experience Measure for Aboriginal and Torres Strait Islander Peoples Accessing Primary Health Care

Aboriginal and Torres Strait Islander peoples’ (hereafter respectfully referred to as Indigenous Australians) experiences of health care are shaped by historical, social and cultural factors, with cultural security critical to effective care provision and engagement between services and community. Positive patient experiences are associated with better health outcomes. Consequently, it is an accreditation requirement that primary health care (PHC) services must formally gather and respond to patient feedback. However, currently available patient feedback tools were not developed with Indigenous Australians, and do not reflect their values and world views. Existing tools do not capture important experiences of care of Indigenous Australians in PHC settings, nor return information that assists services to improve care. Consistent with the principles of Indigenous Data Sovereignty, we will co-design and validate an Indigenous-specific Patient Reported Experience Measure (PREM) that produces data by and for community, suitable for use in quality improvement in comprehensive PHC services. This paper presents the protocol of the study, outlining the rationale, methodologies and associated activities that are being applied in developing the PREM. Briefly, guided by an Aboriginal and Torres Strait Islander Advisory Group, our team of Indigenous and non-Indigenous researchers, service providers and policy makers will use a combination of Indigenous methodologies, participatory, and traditional western techniques for scale development. We will engage PHC service staff and communities in eight selected sites across remote, regional, and metropolitan communities in Australia for iterative cycles of data collection and feedback throughout the research process. Yarning Circles with community members will identify core concepts to develop an “Experience of Care Framework”, which will be used to develop items for the PREM. Staff members will be interviewed regarding desirable characteristics and feasibility considerations for the PREM. The PREM will undergo cognitive and psychometric testing

Understanding the implementation of health checks in the prevention and early detection of chronic diseases among Aboriginal and Torres Strait Islander people in Australia: a realist review protocol

Introduction Chronic disease remains the leading cause of morbidity and mortality among Aboriginal and Torres Strait Islander peoples in Australia. Regular structured, comprehensive health assessments are available to Aboriginal and Torres Strait Islander people as annual health checks funded through the Medicare Benefits Schedule. This realist review aims to identify context-specific enablers and tensions and contribute to developing an evidence framework to guide the implementation of health checks in the prevention and early detection of chronic diseases for Aboriginal and Torres Strait Islander people.Methods and analysis The review will involve the following steps: (1) Aboriginal and Torres Strait Islander engagement and research governance; (2) defining the scope of the review; (3) search strategy; (4) screening, study selection and appraisal; (5) data extraction and organisation of evidence; (6) data synthesis and drawing conclusions. This realist review will follow the Realist and MEta-narrative Evidence Syntheses: Evolving Standards guidance and will be reported as set up by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols statement. The realist programme theory will be developed through a literature review using multiple database searches from 1 November 1999 to 31 June 2022, limited to the English language, and stakeholder consultation, which will be refined throughout the review process. The study findings will be reported by applying the context–mechanism–outcome configuration to gain a deeper understanding of context and underlying mechanisms that influence the implementation of health checks in the prevention and early detection of chronic diseases among Aboriginal and Torres Strait Islander people in Australia.Ethics and dissemination Ethical approval is not required as this review will be using secondary data. Findings will be published in a peer-reviewed journal and presented at scientific conferences.Systematic review registration The review protocol has been registered on the international prospective register of systematic reviews: CRD42022326697