Applying a Participatory Action Research Approach to Engage an Australian Culturally and Linguistically Diverse Community around Human Papillomavirus Vaccination: Lessons Learned.

Globally, migrant and culturally and linguistically diverse (CALD) communities are known to have inequitable access to HPV vaccination. One participatory research approach used to engage CALD communities around vaccination is participatory action research (PAR), but we know little about the use of PAR to engage priority migrant and CALD communities around school and HPV vaccination. To address this gap, we partnered with our local Multicultural Health Service to understand how the largest CALD group in our region of New South Wales, Australia, engages with their local school and HPV vaccination program. Through a long-standing PAR relationship, we used a participatory research method (World Café) approach to explore the level of awareness and engagement a multi-generational community member had concerning HPV vaccination. We acted by sharing a co-designed information website to answer the community's questions about HPV vaccination. We then evaluated these engagements with surveys, focus groups and online analytic platforms. Last, we reflected with project partners and health service stakeholders on the overall project outcomes and shared our learnings. In our discussion, we shared our lessons learned and contributed to a wider conversation about the benefits, challenges, and practicalities of using PAR to engage a priority CALD community around HPV vaccination.

Public values to guide childhood vaccination mandates: A report on four Australian community juries.

OBJECTIVE: Governments use vaccination mandates, of different degrees of coerciveness, to encourage or require childhood vaccination. We elicited the views of well-informed community members on the public acceptability of using childhood vaccination mandates in Australia. METHODS: Four community juries were conducted in Canberra, Launceston, Cairns and Melbourne, Australia between 2021 and 2022. We recruited 51 participants from diverse backgrounds, genders and ages through random digit dialling and social media. Two juries were held in metropolitan areas, and two in regional/rural settings. Outcome measures included jury verdicts and reasons in response to structured questions. RESULTS: All juries were concerned about collective protection and individual rights but prioritised the former over the latter. A majority in all juries supported mandates but juries disagreed with respect to the appropriate mandate types. All juries endorsed using the least restrictive or coercive means to encourage vaccination (providing incentives or education, e.g.) before imposing penalties such as financial losses and school exclusions. The overriding view was that it is fairer to place a direct burden on parents rather than children and that mandates should be designed to avoid inequitable impacts on less advantaged groups in society. Many jurors found conscientious objection acceptable as a controlled option for resolute refusers, provided that overall vaccination coverage remains high. CONCLUSION: This paper gives policymakers access to the reasons that Australians have for supporting or opposing different mandates under conditions of high knowledge, understanding and deliberation regarding policy options. Sustaining high rates of vaccination requires high levels of co-operation between governments, public health actors and the public. Our findings highlight the importance of considering public values in the design and implementation of vaccination mandates. PATIENT AND PUBLIC INVOLVEMENT: We sought input from individuals who did and did not vaccinate during the study design. The views and perspectives of nonvaccinating parents were presented in the evidence to juries. We deliberately excluded nonvaccinating individuals from participating, as the divisive and often hostile nature of the topic, and their minority status, made it difficult to ensure they would feel safe as members of the jury without overrepresenting their perspective in the sample. Two related projects engaged directly with these parents.

Views of general practice staff on sharing general practice data for research: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to understand the range and types of evidence in relation to the views of general practitioner and other general practice staff on sharing general practice data for research purposes. INTRODUCTION: The use of general practice data for research has the potential to drive transformative improvements in health care. The vast amount of patient data collected in general practice is valuable and provides researchers with data to conduct large-scale studies and generate evidence that can inform policy decisions, support the development of personalized medicine, and enhance patient outcomes. However, despite there being clear benefits to using general practice data for research, there are also potential harms, such as data misuse, loss of trust between the general practitioner and patient, and data breaches. INCLUSION CRITERIA: This scoping review will focus on the views of general practice staff, including general practitioners, practice nurses, and practice managers, about sharing general practice data for the purposes of research. This scoping review will exclude sources of evidence that are conducted outside of the general practice setting, and papers that report on public, patient, or community views on data sharing. METHODS: This scoping review will be conducted in accordance with JBI methodology for scoping reviews. A 3-step search strategy will be used to acquire both published and unpublished sources of evidence. Two independent reviewers will select sources of evidence in line with the inclusion and exclusion criteria. No limits on the date of the search or language will be applied. Data will be extracted and the results will be summarized descriptively and presented in a tabular format. REVIEW REGISTRATION: Open Science Framework https://osf.io/49yw5.

Facilitating public involvement in research about healthcare AI: A scoping review of empirical methods.

OBJECTIVE: With the recent increase in research into public views on healthcare artificial intelligence (HCAI), the objective of this review is to examine the methods of empirical studies on public views on HCAI. We map how studies provided participants with information about HCAI, and we examine the extent to which studies framed publics as active contributors to HCAI governance. MATERIALS AND METHODS: We searched 5 academic databases and Google Advanced for empirical studies investigating public views on HCAI. We extracted information including study aims, research instruments, and recommendations. RESULTS: Sixty-two studies were included. Most were quantitative (N = 42). Most (N = 47) reported providing participants with background information about HCAI. Despite this, studies often reported participants' lack of prior knowledge about HCAI as a limitation. Over three quarters (N = 48) of the studies made recommendations that envisaged public views being used to guide governance of AI. DISCUSSION: Provision of background information is an important component of facilitating research with publics on HCAI. The high proportion of studies reporting participants' lack of knowledge about HCAI as a limitation reflects the need for more guidance on how information should be presented. A minority of studies adopted technocratic positions that construed publics as passive beneficiaries of AI, rather than as active stakeholders in HCAI design and implementation. CONCLUSION: This review draws attention to how public roles in HCAI governance are constructed in empirical studies. To facilitate active participation, we recommend that research with publics on HCAI consider methodological designs that expose participants to diverse information sources.

Community views on the secondary use of general practice data: Findings from a mixed-methods study.

INTRODUCTION: General practice data, particularly when combined with hospital and other health service data through data linkage, are increasingly being used for quality assurance, evaluation, health service planning and research. In this study, we explored community views on sharing general practice data for secondary purposes, including research, to establish what concerns and conditions need to be addressed in the process of developing a social licence to support such use. METHODS: We used a mixed-methods approach with focus groups (November-December 2021), followed by a cross-sectional survey (March-April 2022). RESULTS: The participants in this study strongly supported sharing general practice data with the clinicians responsible for their care, and where there were direct benefits for individual patients. Over 90% of survey participants (N = 2604) were willing to share their general practice information to directly support their health care, that is, for the primary purpose of collection. There was less support for sharing data for secondary purposes such as research and health service planning (36% and 45% respectively in broad agreement) or for linking general practice data to data in the education, social services and criminal justice systems (30%-36%). A substantial minority of participants were unsure or could not see how benefits would arise from sharing data for secondary purposes. Participants were concerned about the potential for privacy breaches, discrimination and data misuse and they wanted greater transparency and an opportunity to consent to data release. CONCLUSION: The findings of this study suggest that the public may be more concerned about sharing general practice data for secondary purposes than they are about sharing data collected in other settings. Sharing general practice data more broadly will require careful attention to patient and public concerns, including focusing on the factors that will sustain trust and legitimacy in general practice and GPs. PATIENT AND PUBLIC CONTRIBUTION: Members of the public were participants in the study. Data produced from their participation generated study findings. CLINICAL TRIAL REGISTRATION: Not applicable.

Ethical issues when conducting health research with military personnel: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to understand the scope and nature of evidence in relation to the ethical issues that arise when conducting health research with military personnel. INTRODUCTION: Ethical obligations in human research have been debated for centuries. Historically, research conducted with military personnel has led to ethical controversies regarding autonomy, harm, and informed consent. In particular, the power dynamics, hierarchical nature, and culture that are inherent in military structures may compromise the voluntary nature of research participation. INCLUSION CRITERIA: This scoping review will include all sources of evidence that identify ethical issues, such as autonomy, beneficence, non-maleficence, and justice, within health research with military personnel, including reservists. This review will exclude sources of evidence on health research conducted during combat or on new technologies for fighting in wars. METHODS: This scoping review will be conducted in accordance with the JBI methodology for scoping reviews. A 3-step search strategy will be used to obtain both published and unpublished sources of evidence. Two independent reviewers will screen sources of evidence against the inclusion and exclusion criteria. No limits on language will be applied; we will use Google Translate to translate sources of evidence in languages other than English. Sources of evidence published since 1964 will be included. Data will be extracted using a purpose-designed spreadsheet and the results will be summarized descriptively and presented in tabular format. REVIEW REGISTRATION: Open Science Framework https://osf.io/db85p.

IMPAACT: IMproving the PArticipAtion of older people in policy decision-making on common health CondiTions - a study protocol.

INTRODUCTION: Rapid population ageing is a demographic trend being experienced and documented worldwide. While increased health screening and assessment may help mitigate the burden of illness in older people, issues such as misdiagnosis may affect access to interventions. This study aims to elicit the values and preferences of evidence-informed older people living in the community on early screening for common health conditions (cardiovascular disease, diabetes, dementia and frailty). The study will proceed in three Phases: (1) generating recommendations of older people through a series of Citizens' Juries; (2) obtaining feedback from a diverse range of stakeholder groups on the jury findings; and (3) co-designing a set of Knowledge Translation resources to facilitate implementation into research, policy and practice. Conditions were chosen to reflect common health conditions characterised by increasing prevalence with age, but which have been underexamined through a Citizens' Jury methodology. METHODS AND ANALYSIS: This study will be conducted in three Phases-(1) Citizens' Juries, (2) Policy Roundtables and (3) Production of Knowledge Translation resources. First, older people aged 50+ (n=80), including those from traditionally hard-to-reach and diverse groups, will be purposively recruited to four Citizen Juries. Second, representatives from a range of key stakeholder groups, including consumers and carers, health and aged care policymakers, general practitioners, practice nurses, geriatricians, allied health practitioners, pharmaceutical companies, private health insurers and community and aged care providers (n=40) will be purposively recruited for two Policy Roundtables. Finally, two researchers and six purposively recruited consumers will co-design Knowledge Translation resources. Thematic analysis will be performed on documentation and transcripts. ETHICS AND DISSEMINATION: Ethical approval has been obtained through the Torrens University Human Research Ethics Committee. Participants will give written informed consent. Findings will be disseminated through development of a policy brief and lay summary, peer-reviewed publications, conference presentations and seminars.

Australian women's judgements about using artificial intelligence to read mammograms in breast cancer screening.

Objective: Mammographic screening for breast cancer is an early use case for artificial intelligence (AI) in healthcare. This is an active area of research, mostly focused on the development and evaluation of individual algorithms. A growing normative literature argues that AI systems should reflect human values, but it is unclear what this requires in specific AI implementation scenarios. Our objective was to understand women's values regarding the use of AI to read mammograms in breast cancer screening. Methods: We ran eight online discussion groups with a total of 50 women, focused on their expectations and normative judgements regarding the use of AI in breast screening. Results: Although women were positive about the potential of breast screening AI, they argued strongly that humans must remain as central actors in breast screening systems and consistently expressed high expectations of the performance of breast screening AI. Women expected clear lines of responsibility for decision-making, to be able to contest decisions, and for AI to perform equally well for all programme participants. Women often imagined both that AI might replace radiographers and that AI implementation might allow more women to be screened: screening programmes will need to communicate carefully about these issues. Conclusions: To meet women's expectations, screening programmes should delay implementation until there is strong evidence that the use of AI systems improves screening performance, should ensure that human expertise and responsibility remain central in screening programmes, and should avoid using AI in ways that exacerbate inequities.

Measures of socioeconomic advantage are not independent predictors of support for healthcare AI: subgroup analysis of a national Australian survey.

Objectives: Applications of artificial intelligence (AI) have the potential to improve aspects of healthcare. However, studies have shown that healthcare AI algorithms also have the potential to perpetuate existing inequities in healthcare, performing less effectively for marginalised populations. Studies on public attitudes towards AI outside of the healthcare field have tended to show higher levels of support for AI among socioeconomically advantaged groups that are less likely to be sufferers of algorithmic harms. We aimed to examine the sociodemographic predictors of support for scenarios related to healthcare AI.Methods: The Australian Values and Attitudes toward AI survey was conducted in March 2020 to assess Australians' attitudes towards AI in healthcare. An innovative weighting methodology involved weighting a non-probability web-based panel against results from a shorter omnibus survey distributed to a representative sample of Australians. We used multinomial logistic regression to examine the relationship between support for AI and a suite of sociodemographic variables in various healthcare scenarios.Results: Where support for AI was predicted by measures of socioeconomic advantage such as education, household income and Socio-Economic Indexes for Areas index, the same variables were not predictors of support for the healthcare AI scenarios presented. Variables associated with support for healthcare AI included being male, having computer science or programming experience and being aged between 18 and 34 years. Other Australian studies suggest that these groups may have a higher level of perceived familiarity with AI.Conclusion: Our findings suggest that while support for AI in general is predicted by indicators of social advantage, these same indicators do not predict support for healthcare AI.

Ethical issues in big data: A qualitative study comparing responses in the health and higher education sectors.

INTRODUCTION: The health and higher education sectors are increasingly using large administrative datasets for secondary purposes. Both sectors experience ethical challenges in the use of big data. This study identifies and explores how these two sectors are responding to these ethical challenges. OBJECTIVES AND APPROACH: Through in-depth qualitative interviews, we asked 18 key Australian stakeholders using or sharing big data in the health and higher education sectors to identify the ethical, social and legal issues associated with big data use and their views on how to build ethical policies in this area. RESULTS: There was strong agreement between participants in the two sectors in a number of areas. All participants believed in the benefits of data usage and recognised the importance of privacy, transparency and consent, and the duties for data custodians which followed from these principles. However, there were also significant differences. The participants in the two sectors took different views on what data are for, what benefits data should provide, who should benefit and how, and the imagined unit of analysis for working with data. Broadly, participants from the higher education sector approached these questions with individual students in mind, while health sector informants approached these questions with collectives, groups, or publics in mind. In deciding what to do, the health participants drew principally on a shared toolkit of legislative, regulatory and ethical instruments, and higher education participants on a culture of duties towards individuals. CONCLUSION / IMPLICATIONS: The health and higher education sectors are responding to ethical challenges in the use of big data in different, but potentially complementary, ways.

Using World Cafés to engage an Australian culturally and linguistically diverse community around human papillomavirus vaccination.

INTRODUCTION: Internationally, cultural factors are associated with vaccine uptake and completion in ethnic minority communities. Whilst Australia has achieved high human papillomavirus (HPV) vaccination, little is known about how culture or ethnicity influences HPV vaccination engagement. To address these gaps, we partnered with our Local Health District to explore how one culturally and linguistically diverse (CALD) community engages with school and HPV vaccination. METHODS: We adapted a participatory research method (the World Café) to engage one local CALD community-the Macedonian community (Our bi-cultural researcher and participants preferred the term 'Macedonia' rather than The Republic of North Macedonia as outlined in the 2018 Prespa agreement) in New South Wales (Australia)-to discuss HPV and school vaccination. Our qualitative analysis combined deductive codes taken from the Tailoring Immunization Programme framework, inductive codes guided by narrative inquiry (temporality, sociality and place) and previously known vaccination 'trust' frameworks. RESULTS: In late 2019, 31 local Macedonian community members were purposely recruited for two World Cafés (n = 15 mothers/grandmothers and n = 16 young adults). Our themes reveal a community narrative grounded in historical vaccine experiences, family views on vaccination and a general trust in schools. Participants collectively discussed how 'increasing knowledge' and 'tailoring health communications' could strengthen community vaccine decision-making. CONCLUSION: This study demonstrates how research partnerships and participatory methods can be applied in CALD community settings to research engagement with school and HPV vaccination. Our World Café dialogues highlight a positive narrative about vaccines, where community vaccination behaviours were built on multilayer trust relationships despite low vaccine knowledge. Our findings further knowledge around 'public trust' in school vaccination, highlighting the importance of existing (or missing) trust relationships when tailoring vaccine communication to local CALD communities. PATIENT OR PUBLIC CONTRIBUTION: Participants who took part in the World Cafes were all local Macedonian community parents or young adults who have been or will be exposed to the health services offered by school-based HPV vaccination. Thus, all the data collected came from their personal experiences with the school vaccination programme, or how they expect to participate in the programme. To ensure our study design was culturally appropriate and tailored to the Macedonian community, we engaged with the relevant local health stakeholders (the bi-cultural Multicultural Health Officer and Multicultural Health Service Manager Programme Director) to adapt and refine the World Café method for this context and setting. Our local health stakeholders also reviewed our preliminary findings, assisted with data interpretation and participated in manuscript editing.

Practical, epistemic and normative implications of algorithmic bias in healthcare artificial intelligence: a qualitative study of multidisciplinary expert perspectives.

BACKGROUND: There is a growing concern about artificial intelligence (AI) applications in healthcare that can disadvantage already under-represented and marginalised groups (eg, based on gender or race). OBJECTIVES: Our objectives are to canvas the range of strategies stakeholders endorse in attempting to mitigate algorithmic bias, and to consider the ethical question of responsibility for algorithmic bias. METHODOLOGY: The study involves in-depth, semistructured interviews with healthcare workers, screening programme managers, consumer health representatives, regulators, data scientists and developers. RESULTS: Findings reveal considerable divergent views on three key issues. First, views on whether bias is a problem in healthcare AI varied, with most participants agreeing bias is a problem (which we call the bias-critical view), a small number believing the opposite (the bias-denial view), and some arguing that the benefits of AI outweigh any harms or wrongs arising from the bias problem (the bias-apologist view). Second, there was a disagreement on the strategies to mitigate bias, and who is responsible for such strategies. Finally, there were divergent views on whether to include or exclude sociocultural identifiers (eg, race, ethnicity or gender-diverse identities) in the development of AI as a way to mitigate bias. CONCLUSION/SIGNIFICANCE: Based on the views of participants, we set out responses that stakeholders might pursue, including greater interdisciplinary collaboration, tailored stakeholder engagement activities, empirical studies to understand algorithmic bias and strategies to modify dominant approaches in AI development such as the use of participatory methods, and increased diversity and inclusion in research teams and research participant recruitment and selection.

Utopia versus dystopia: Professional perspectives on the impact of healthcare artificial intelligence on clinical roles and skills.

BACKGROUND: Alongside the promise of improving clinical work, advances in healthcare artificial intelligence (AI) raise concerns about the risk of deskilling clinicians. This purpose of this study is to examine the issue of deskilling from the perspective of diverse group of professional stakeholders with knowledge and/or experiences in the development, deployment and regulation of healthcare AI. METHODS: We conducted qualitative, semi-structured interviews with 72 professionals with AI expertise and/or professional or clinical expertise who were involved in development, deployment and/or regulation of healthcare AI. Data analysis using combined constructivist grounded theory and framework approach was performed concurrently with data collection. FINDINGS: Our analysis showed participants had diverse views on three contentious issues regarding AI and deskilling. The first involved competing views about the proper extent of AI-enabled automation in healthcare work, and which clinical tasks should or should not be automated. We identified a cluster of characteristics of tasks that were considered more suitable for automation. The second involved expectations about the impact of AI on clinical skills, and whether AI-enabled automation would lead to worse or better quality of healthcare. The third tension implicitly contrasted two models of healthcare work: a human-centric model and a technology-centric model. These models assumed different values and priorities for healthcare work and its relationship to AI-enabled automation. CONCLUSION: Our study shows that a diverse group of professional stakeholders involved in healthcare AI development, acquisition, deployment and regulation are attentive to the potential impact of healthcare AI on clinical skills, but have different views about the nature and valence (positive or negative) of this impact. Detailed engagement with different types of professional stakeholders allowed us to identify relevant concepts and values that could guide decisions about AI algorithm development and deployment.

Public views on ethical issues in healthcare artificial intelligence: protocol for a scoping review.

BACKGROUND: In recent years, innovations in artificial intelligence (AI) have led to the development of new healthcare AI (HCAI) technologies. Whilst some of these technologies show promise for improving the patient experience, ethicists have warned that AI can introduce and exacerbate harms and wrongs in healthcare. It is important that HCAI reflects the values that are important to people. However, involving patients and publics in research about AI ethics remains challenging due to relatively limited awareness of HCAI technologies. This scoping review aims to map how the existing literature on publics' views on HCAI addresses key issues in AI ethics and governance. METHODS: We developed a search query to conduct a comprehensive search of PubMed, Scopus, Web of Science, CINAHL, and Academic Search Complete from January 2010 onwards. We will include primary research studies which document publics' or patients' views on machine learning HCAI technologies. A coding framework has been designed and will be used capture qualitative and quantitative data from the articles. Two reviewers will code a proportion of the included articles and any discrepancies will be discussed amongst the team, with changes made to the coding framework accordingly. Final results will be reported quantitatively and qualitatively, examining how each AI ethics issue has been addressed by the included studies. DISCUSSION: Consulting publics and patients about the ethics of HCAI technologies and innovations can offer important insights to those seeking to implement HCAI ethically and legitimately. This review will explore how ethical issues are addressed in literature examining publics' and patients' views on HCAI, with the aim of determining the extent to which publics' views on HCAI ethics have been addressed in existing research. This has the potential to support the development of implementation processes and regulation for HCAI that incorporates publics' values and perspectives.

Mapping precision public health definitions, terminology and applications: a scoping review protocol.

INTRODUCTION: Precision public health is an emerging and evolving field. Academic communities are divided regarding terminology and definitions, and what the scope, parameters and goals of precision public health should include. This protocol summarises the procedure for a scoping review which aims to identify and describe definitions, terminology, uses of the term and concepts in current literature. METHODS AND ANALYSIS: A scoping review will be undertaken to gather existing literature on precision public health. We will search CINAHL, PubMed, Scopus, Web of Science and Google Scholar, and include all documents published in English that mention precision public health. A critical discourse analysis of the resulting papers will generate an account of precision public health terminology, definitions and uses of the term and the use and meaning of language. The analysis will occur in stages: first, descriptive information will be extracted and descriptive statistics will be calculated in order to characterise the literature. Second, occurrences of the phrase 'precision public health' and alternative terms in documents will be enumerated and mapped, and definitions collected. The third stage of discourse analysis will involve analysis and interpretation of the meaning of precision public health, including the composition, organisation and function of discourses. Finally, discourse analysis of alternative phrases to precision public health will be undertaken. This will include analysis and interpretation of what alternative phrases to precision public health are used to mean, how the phrases relate to each other and how they are compared or contrasted to precision public health. Results will be grouped under headings according to how they answer the research questions. ETHICS AND DISSEMINATION: No ethical approval will be required for the scoping review. Results of the scoping review will be used as part of a doctoral thesis, and may be published in journals, conference proceedings or elsewhere.

Understanding culturally safe aged care from the perspectives of older Aboriginal Australians in rural and remote communities.

ISSUE ADDRESSED: Aboriginal and Torres Strait Islander peoples face challenges in accessing aged care and are less likely to use some services than their non-Indigenous counterparts. Culturally safe care is increasingly recognised as an enabler to improve access and quality of care. This study explored older Aboriginal peoples' perceptions and experience of culturally safe aged care. METHODS: We conducted semi-structured interviews with sixty-three older Aboriginal people, purposively sampled from three rural and remote geographic locations in South Australia, between April and October 2018, with participants who were both receiving and not receiving aged care services. We asked participants how organisations do or could meet their aged care needs. We analysed interview data inductively into themes. These themes were incorporated into six principles of culturally safe aged care which were subsequently endorsed by participants and study stakeholders. RESULTS: Participants described culturally safe aged care services as those which facilitated or maintained connection to participants' culture, traditional lands and community. Five themes were identified: maintaining cultural identity, culturally informed service delivery, culturally competent workforce, culturally supportive environments and partnerships and collaboration within the aged care service system. CONCLUSION: Addressing cultural safety in aged care will require organisations to adapt their policies, service delivery, environments and work practices to meet the needs of older Aboriginal peoples. SO WHAT? Identifying culturally safe aged care from the perspectives of older Aboriginal and Torres Strait Islander peoples provides timely insight to how services may be better designed and implemented to promote quality of life.

Building Indigenous health workforce capacity and capability through leadership - the Miwatj health leadership model.

AIM: In the crowded field of leadership research, Indigenous leadership remains under-researched. This article explores the Leadership Model of an Aboriginal Community Controlled Primary Health Care Organisation providing services to the Yolngu people of remote northern Australia: the Miwatj Health Aboriginal Corporation (Miwatj). BACKGROUND: The limited research which does exist on Indigenous leadership points to unique challenges for Indigenous leaders. These challenges relate to fostering self-determination in their communities, managing significant community expectations, and navigating a path between culturally divergent approaches to management and leadership. METHODS: Guided by Indigenous methodology and using a mixed methods approach, semi-structured interviews, self-reported health service data, organisational and publicly available documents, and literature were analysed using a framework method of thematic analysis to identify key themes of the Miwatj Leadership Model. FINDINGS: The Miwatj Leadership Model is underpinned by three distinctive elements: it offers Yolngu people employment opportunities; it supports staff who want to move into leadership positions and provides capacity building through certificates and diplomas; and it provides for the physical, emotional, and cultural wellbeing of all Yolngu staff. Furthermore, the model respects traditional Yolngu forms of authority and empowers the community to develop, manage and sustain their own health. The Miwatj Leadership Model has been successful in providing formal pathways to support Indigenous staff to take on leadership roles, and has improved the accessibility and acceptability of health care services as a result of Yolngu employment and improved cultural safety. CONCLUSIONS: Translating the Miwatj Leadership Model into other health services will require considerable thought and commitment. The Miwatj Leadership Model can be adapted to meet the needs of other health care services in consideration of the unique context within which they operate. This study has demonstrated the importance of having a formal leadership model that promotes recruitment, retention, and career progression for Indigenous staff.

Aboriginal community-controlled aged care: principles, practices and actions to integrate with primary health care.

AIM: To identify: 1) best practice aged care principles and practices for Aboriginal and Torres Strait Islander older peoples, and 2) actions to integrate aged care services with Aboriginal community-controlled primary health care. BACKGROUND: There is a growing number of older Aboriginal and Torres Strait Islander peoples and an unmet demand for accessible, culturally safe aged care services. The principles and features of aged care service delivery designed to meet the unique needs of Aboriginal and Torres Strait Islander peoples have not been extensively explored and must be understood to inform aged care policy and primary health care planning into the future. METHODS: The research was governed by leaders from across the Aboriginal community-controlled primary health care sector who identified exemplar services to explore best practice in culturally aligned aged care. In-depth case studies were undertaken with two metropolitan Aboriginal community-controlled services. We conducted semi-structured interviews and yarning circles with 46 staff members to explore key principles, ways of working, enablers and challenges for aged care service provision. A framework approach to thematic analysis was undertaken with emergent findings reviewed and refined by participating services and the governance panel to incorporate national perspectives. FINDINGS: A range of principles guided Aboriginal community-controlled aged care service delivery, such as supporting Aboriginal and Torres Strait Islander identity, connection with elders and communities and respect for self-determination. Strong governance, effective leadership and partnerships, Aboriginal and Torres Strait Islander workforce and culturally safe non-Indigenous workforce were among the identified enablers of aged care. Nine implementation actions guided the integration of aged care with primary health care service delivery. Funding limitations, workforce shortages, change management processes and difficulties with navigating the aged care system were among the reported challenges. These findings contribute to an evidence base regarding accessible, integrated, culturally safe aged care services tailored to the needs of Aboriginal and Torres Strait Islander peoples.

Sharing Government Health Data With the Private Sector: Community Attitudes Survey.

BACKGROUND: The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. OBJECTIVE: This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. METHODS: A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. RESULTS: The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants' views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people's health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government's capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population. CONCLUSIONS: This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.