Concurrent with The Power to Persuade 2016 Symposium, we are running some accompanying blog posts. Here Dr Graham Brown details lessons learned in enabling disenfranchised communities to influence policy.
The policy responses to HIV and hepatitis C in Australia are having to respond to the largest and most rapid changes across these epidemics for decades. There have been unprecedented developments in prevention and treatment technologies, including the use of treatment in preventing HIV transmission and a highly effective cure in hepatitis C. These exciting developments intersect with issues of stigma, morality and structural barriers impacting on the communities most affected, creating a complex and difficult to predict policy space. We have a window of opportunity to turn around the HIV and hepatitis C epidemics in Australia – but we need to get it right.
Globally, the policy responses to HIV and hepatitis C have always been inherently social and political as they respond to a complex and wicked public health challenge. In Australia – the combined action of communities of gay men, sex workers, people who inject drugs, people living with HIV and hepatitis C, and clinicians working in partnership with government, public health and research oversaw one of the most rapid and sustained changes in community behaviour in Australia’s health promotion history (1). The lessons have included the need to harness community mobilisation and action; sustain participation, investment and leadership across the partnership; commit to social, political and structural approaches; and build and use evidence from multiple sources to continuously adapt and evolve (1). The same themes are present in many other countries who have had relative success in their responses
Critical within these responses has been the role of community or peer-led programs - including service delivery, health promotion, and community mobilisation as well as leadership and advocacy within policy (2, 3). What defines these programs is they are led and conducted by peers from within the most affected communities and operate through organisations established and governed by these communities. These organisations must continuously navigate and adapt to constantly changing political and stigmatising contexts around sex, sexuality and drug use.
However, despite the rhetoric of support for such community and peer-led adaptive responses, their role and value continues to be under-used and under-resourced in many national responses (4, 5).
While the Australian partnership with its peer-led responses has been relatively durable, it continues to endure periods of disharmony or different levels of commitment. The Australian response also demonstrates that partnerships are not static. Partnerships in times of crisis, such as the early decades of HIV which necessitated collaboration, are more easily characterised as successful. Partnerships in times of when the response needs to become more complex and diverse, or changes are harder to predict, are much harder work to sustain(1).
The unique perspective of effective community and peer-led organisations is they participate within and are accountable to their communities, rather than intervene on the community. This means they have real time insights into rapid changes at a community level which social research and epidemiology cannot provide. Exactly how communities affected by HIV and hepatitis C will respond to the current changes occurring in is unclear – but these communities are already adapting more quickly than policy and research can monitor. In times of rapid change and emerging challenges, what is needed more than ever is this real time knowledge and influence from our community and peer-led organisations.
However, one of the dynamics which sustains the underutilisation and under resourcing of peer-led programs is the combination of their limited capacity to demonstrate their role as part of a combined multi-sectoral response to HIV and hepatitis C, coupled with stigma towards their communities, and the subsequent devaluing of policy advice from those communities.
The W3 project took on the challenge to understand the current and potential role of our investments in peer led organisations as more than a community intervention, but as an active part of a complex and emergent policy response.
We collaborated with 10 peer-led organisations in Australia working within communities of people who use drugs, gay men, sex workers and people living with HIV across Australia. Drawing on complex systems approaches (6-8), we developed a bold new way of conceptualising and demonstrating the role of peer-led programs. We found there were four functions that were required for peer-led programs to be effective and sustainable in such a constantly changing and political environment
- Engagement: How the program maintains up to date mental models of the diversity and dynamism of needs, experiences and identities in its target communities.
- Alignment: How the program picks up signals about what’s happening in its policy / sector environment and uses them to better understand how it works or what changes are occurring.
- Adaptation: How the program changes its program approach or advocacy priorities based on mental models that are refined according to new insights from engagement and alignment.
- Influence: how the program uses existing social and political processes to influence and achieve improved outcomes in both the community and the policy/sector
We found it was the interaction between all four functions that was required for peer based programs to: demonstrate the credibility of their peer and community insights; influence health, community, and political systems; and adapt to changing contexts and policy priorities in tandem with their communities.
For example: the more authentic a peer-led program’s engagement is with its community, the more accurate and timely will be the insights about cultural changes or impact of policies and services. The better the peer program can combine these insights with their understanding of the policy system and package, time and present this effectively– the more influential the insights will be. The more influential these insights are within the policy system, the better aligned the sector will be to create the environment in which the policies, health services, and the peer-program itself is able to rapidly adapt. The more the peer-program can rapidly adapt, the more authentic they will be seen in their communities, and so enhance their engagement.
We found the functions can become headings to develop set of interrelated and tailored indicators that better reflect: the role of peer-led programs within the Australian HIV response; what makes one investment in peer-led programs more effective than another; and the role of the broader HIV and hepatitis C policy response in maximising the value from these investments.
Communities, health systems, policy circuits, and peer led organisations are all needing to adapt and change in tandem with an environment that itself is in flux. To do this we need to draw on all our real-time insights and resources. If all parts of the HIV and hepatitis C response are not actively supporting and gaining strategic insight from our investments in peer-led programs, then we may be undermining rather than maximising our opportunity to finally turn around these epidemics.
1. Brown G, O'Donnell D, Crooks L, Lake R. Mobilisation, politics, investment and constant adaptation: Lessons from the Australian health-promotion response to HIV. Health Promotion Journal of Australia. 2014;25:35-41.
2. UNAIDS, STOP AIDS Alliance. Communities deliver: the critical role of communities in reaching global targets to end the AIDS epidemic. Geneva: 2015.
3. UNAIDS. Invest in advocacy - Community participation in accountability is key to ending the AIDS epidemic. Geneva: Joint United Nations Programme on HIV/AIDS, 2016.
4. Brown G, Reeders D, Dowsett GW, Ellard J, Carman M, Hendry N, et al. Investigating combination HIV prevention: isolated interventions or complex system. Journal of the International AIDS Society. 2015;18(1).
5. Collins CJ, Greenall MN, Mallouris C, Smith SL. Time for full inclusion of community actions in the response to AIDS 2016.
6. Mabry PL, Kaplan RM. Systems Science: A Good Investment for the Public’s Health. Health Education & Behavior. 2013;40(1 suppl):9S-12S.
7. Midgley G, editor. Systems thinking. . Thousand Oaks, CA:: Sage Publications.; 2003.
8. Luke DA, Stamatakis KA. Systems Science Methods in Public Health: Dynamics, Networks, and Agents. Annual Review of Public Health. 2012;33:357-76.