Tackling structural stigma: a systems perspective.

INTRODUCTION: Structural stigma in the global HIV response is a "moving target" that constantly evolves as the epidemic changes. Tackling structural stigma requires an understanding of the drivers and facilitators of stigma in complex community, policy and health systems. In this paper, we present findings from a study adopting a systems perspective to understand how to tackle structural stigma via the Meaningful Involvement of People with HIV/AIDS (MIPA), while highlighting the challenges in demonstrating peer leadership from people living with HIV (PLHIV). METHODS: Through a long-term ongoing community-research collaboration (2015-2023), the study applied systems thinking methods to draw together the insights of over 90 peer staff from 10 Australian community and peer organizations. We used hypothetical narratives, affinity methods and causal loop diagrams to co-create system maps that visualize the factors that influence the extent to which peer leadership is expected, respected, sought-out and funded in the Australian context. We then developed draft indicators of what we should see happening when PLHIV peer leadership and MIPA is enabled to challenge structural stigma. RESULTS: Participants in the collaboration identified the interactions at a system level, which can enable or constrain the quality and influence of PLHIV peer leadership. Participants identified that effective peer leadership is itself affected by structural stigma, and peer leaders and the programmes that support and enable peer leadership must navigate a complex network of causal pathways and strategic pitfalls. Participants identified that indicators for effective PLHIV peer leadership in terms of engagement, alignment, adaptation and influence also required indicators for policy and service organizations to recognize their own system role to value and enable PLHIV peer leadership. Failing to strengthen and incorporate PLHIV leadership within broader systems of policy making and health service provision was identified as an example of structural stigma. CONCLUSIONS: Incorporating PLHIV leadership creates a virtuous cycle, because, as PLHIV voices are heard and trusted, the case for their inclusion only gets stronger. This paper argues that a systems perspective can help to guide the most productive leverage points for intervention to tackle structural stigma and promote effective PLHIV leadership.

Achieving meaningful participation of people who use drugs and their peer organizations in a strategic research partnership.

BACKGROUND: Peer-led programs with people who use drugs (PWUD) have been a key characteristic of the harm reduction in many countries, including their involvement in research. However, peer involvement in research is often limited to recruitment, consultation, and reporting back, rather than a genuine collaboration in the priority setting, design, and conduct of research. PWUD peer organizations face ongoing challenges to demonstrate the depth of their knowledge of current and emerging issues within drug-using networks and the value of their peer insights for effective research and policy. The identification of benefits, barriers, and enablers for meaningful participation of PWUD in research has often been limited to methodological rather than system level factors. METHODS: This paper draws on the experiences and findings of the What Works and Why (W3) Project, a 5-year collaborative study with peer organizations. The study drew on systems thinking methods to develop a framework to demonstrate the role of peer organizations within their community and policy systems. The study required peer staff and researchers to undertake the simultaneous role of drivers, participants, and analysts in the research. To identify the learnings in relation to meaningful participation of PWUD peer organizations in research, we drew together the insights and experiences of peer staff and researchers across the 5 years of the study RESULTS: The W3 Project provided insights into the nuances of community-engaged research practice and the ongoing benefits, barriers, and enablers to the meaningful participation of PWUD and their peer organizations. These included system-level barriers and enablers beyond individual research projects or methodology. The capacity of research and peer organizations to maintain meaningful peer participation in research can be restricted or enhanced by the systems in which they are embedded. CONCLUSIONS: Recognizing peer organizations as active participants and drivers within community and policy systems can help clarify their unique and critical role in research. Achieving meaningful collaboration with PWUD peer organizations requires looking beyond good practice methods to the system-level factors with attention to the system-level benefits, barriers, and enablers.

Characterising the policy influence of peer-based drug user organisations in the context of hepatitis C elimination.

BACKGROUND: Achieving hepatitis C (HCV) elimination goals will require major policy and health service reorientation to scale up testing and treatment among people who inject drugs (PWID). To achieve this, a close partnership with peer-based drug user organisations is required. However, peer organisations have historical and ongoing difficulties in articulating the validity of their service delivery and policy advice, leading to some policy and health services resisting partnership and advice from peer-based drug user organisations. METHODS: To develop a deeper understanding of the role of peer-based drug user organisations in the HCV response, we analysed data from the W3 Project which used systems thinking methods to draw together the insights of over 90 peer staff from 10 Australian community and peer organisations in HCV and HIV. The resulting system maps were analysed to identify system dynamics and functions that need to be fulfilled for peer organisations to be influential within their community and policy system. RESULTS: We identified the interactions at a system level which can enhance or constrain the quality and influence of policy advice from peer-based drug user organisations. We found the strength of Peer-based drug user organisations to support the scale up of HCV testing and treatment was their capacity to mediate between, and navigate within, the complex community and policy/health service systems. While peer-based drug user organisations endeavour to demonstrate their capacity and credibility in terms of engagement, alignment, adaptation and influence, policy and service organisations also need recognise their own system role to value and enable peer-based drug user organisations to achieve their potential. CONCLUSION: If the HCV prevention and treatment system is to reach PWID living with HCV and achieve HCV elimination goals, then policy and health services need to invest in strengthening peer-based drug user organisations as well as recognise, value and act on quality policy advice from PWID peer leadership.

Adapting to a marketised system: Network analysis of a personalisation scheme in early implementation.

As governments worldwide turn to personalised budgets and market-based solutions for the distribution of care services, the care sector is challenged to adapt to new ways of working. The Australian National Disability Insurance Scheme (NDIS) is an example of a personalised funding scheme that began full implementation in July 2016. It is presented as providing greater choice and control for people with lifelong disability in Australia. It is argued that the changes to the disability care sector that result from the NDIS will have profound impacts for the care sector and also the quality of care and well-being of individuals with a disability. Once established, the NDIS will join similar schemes in the UK and Europe as one of the most extensive public service markets in the world in terms of numbers of clients, geographical spread, and potential for service innovation. This paper reports on a network analysis of service provider adaptation in two locations-providing early insight into the implementation challenges facing the NDIS and the reconstruction of the disability service market. It demonstrates that organisations are facing challenges in adapting to the new market context and seek advice about adaptation from a stratified set of sources.

A Systems Thinking Approach to Understanding and Demonstrating the Role of Peer-Led Programs and Leadership in the Response to HIV and Hepatitis C: Findings From the W3 Project.

The central role of community and peer-led programs has been a key characteristic of the Australian partnership response to HIV and hepatitis C since the beginning of the epidemics. Despite this, peer-led programs continue to have limited capacity to demonstrate their role and value as part of a multi-sectoral response. What makes one peer-led program a better investment than another? What role does the rest of the sector have in ensuring we gain the most value from these investments? To investigate this, we facilitated interactive systems thinking methods with 10 programs working within communities of people who inject drugs, gay men, sex workers and people living with HIV across Australia. This included articulating program theories in diagram and textual form to help us understand the role of peer-based programs promoting peer leadership within the Australian HIV and hepatitis C responses. Our aim was to develop a framework for monitoring and evaluation that could be applied to peer led programs at different levels and in different contexts. We found that for peer-led programs to fulfill their role, and to navigate the rapid changes occurring in the both epidemics, they need to: demonstrate the credibility of their peer and community insights; continually adapt to changing contexts and policy priorities in tandem with their communities; and maintain influence in both community and policy systems. We developed a framework of four key functions (Engagement, Alignment, Adaptation, and Influence) which peer-based programs need to demonstrate, which form the basis for identifying quality indicators. This article presents a new way of framing and monitoring investments in peer-led programs and peer eadership actions by these programs. If health policy is committed to strengthening the leadership shown by affected communities, then we need to understand, enhance, monitor and value the role of peer-led programs and peer leadership within the overall prevention system. We believe the W3 framework, drawing on systems thinking and modeling, can support funders, policy-makers and programs to achieve this.

Redressing or entrenching social and health inequities through policy implementation? Examining personalised budgets through the Australian National Disability Insurance Scheme.

BACKGROUND: Increasing attention is being given to political agenda setting for the social determinants of health. While designing policies that can improve the social determinants of health is critical, so too is ensuring these policies are appropriately administered and implemented. Many policies have the potential to entrench or even expand inequities during implementation. At present little attention has been given to this in the social determinants of health literature. There is an international trend in the personalisation of funding for care services, from the National Health Service in the England to the Brukerstyrt Personlig Assistanse in Norway. Part of this trend is the Australian National Disability Insurance Scheme (NDIS). The NDIS has the potential to secure gains in health for hundreds of thousands of Australians living with a disability. However, policies are only as good as their implementation. METHODS: As part of a longitudinal study on the implementation of the Australian NDIS, we conducted a systematic document search of policy documents pertaining to the Scheme on the websites of government departments with auspice over the design and implementation of the scheme with the aim of examining issues of equity. RESULTS AND DISCUSSION: Scheme architects have argued that the NDIS has the potential to replace a piecemeal and fragmented set of state-determined services with an empowering model of user choice and control. However, without careful attention to both existing inequities and, diversity and difference across populations (e.g. different disability types and different localities), market based approaches such as the NDIS have the serious potential to entrench or even widen inequities. CONCLUSIONS: The research concluded that 'personalisation' approaches can widen inequities and inequalities unless careful consideration is given at both policy design and implementation stages.

Investigating combination HIV prevention: isolated interventions or complex system.

INTRODUCTION: Treatment as prevention has mobilized new opportunities in preventing HIV transmission and has led to bold new UNAIDS targets in testing, treatment coverage and transmission reduction. These will require not only an increase in investment but also a deeper understanding of the dynamics of combining behavioural, biomedical and structural HIV prevention interventions. High-income countries are making substantial investments in combination HIV prevention, but is this investment leading to a deeper understanding of how to combine interventions? The combining of interventions involves complexity, with many strategies interacting with non-linear and multiplying rather than additive effects. DISCUSSION: Drawing on a recent scoping study of the published research evidence in HIV prevention in high-income countries, this paper argues that there is a gap between the evidence currently available and the evidence needed to guide the achieving of these bold targets. The emphasis of HIV prevention intervention research continues to look at one intervention at a time in isolation from its interactions with other interventions, the community and the socio-political context of their implementation. To understand and evaluate the role of a combination of interventions, we need to understand not only what works, but in what circumstances, what role the parts need to play in their relationship with each other, when the combination needs to adapt and identify emergent effects of any resulting synergies. There is little development of evidence-based indicators on how interventions in combination should achieve that strategic advantage and synergy. This commentary discusses the implications of this ongoing situation for future research and the required investment in partnership. We suggest that systems science approaches, which are being increasingly applied in other areas of public health, could provide an expanded vocabulary and analytic tools for understanding these complex interactions, relationships and emergent effects. CONCLUSIONS: Relying on the current linear but disconnected approaches to intervention research and evidence we will miss the potential to achieve and understand system-level synergies. Given the challenges in sustaining public health and HIV prevention investment, meeting the bold UNAIDS targets that have been set is likely to be dependent on achieving systems level synergies.