About the Author
The Project was a collaboration with peer organisations working with people who use drugs. Susan’s work focussed on translating their knowledge into resources to help improve Australia’s hepatitis C response.
The W3 Framework shows the importance of peer skill and the expertise that comes from lived experience. Insights from peer-led drug-user organisations are often our only source of real-time knowledge about emerging community trends and needs. It is vital for the sector to recognise and act on these valuable strategic insights.
In the lead up to World Hepatitis Day, we invited Susan to share some reflections about her exciting and important work.
The new direct-acting antiviral (DAA) medicines can cure hepatitis C. They are effective, safe, and covered by Medicare. This is a huge breakthrough for people living with chronic hepatitis C in Australia.
When DAA treatments first became available, uptake was promising. After the initial surge, however, evidence quickly emerged that uptake was plateauing and, in some areas, slowing. This was the situation among people who inject drugs who have hepatitis C.
Many were wary of the healthcare system, and reluctant or sceptical about the new treatment. It was apparent that different strategies were needed to reorient services and engage people who inject drugs to enable and encourage them to seek treatment.
To create better strategies and services, we need to know why existing approaches didn’t work. And the only people who can tell us this, are the people the strategies don’t work for.
The experiences and knowledge of PWID within peer programs are a vital asset and can feed into strategies to scale up DAA treatment.
The Peer Insights Project was designed to do just that. The Project was an 18-month collaboration between ARCSHS and three organisations led by people who use drugs — Harm Reduction Victoria, Peer Based Harm Reduction WA, and NSW Users and AIDS Association.
These organisations co-designed the project and were equal partners with ARCSHS. This proved crucial for building trust and keeping the experiences of peer workers and their networks at the forefront.
We brought peer workers and educators together for focus groups and interviews every six months. Focus groups were held at both metro (Melbourne, Perth, and Sydney) and regional areas in Victoria, Western Australia, and New South Wales.
Peer workers shared their real-time, on-the-ground insights about PWID’s current attitudes, beliefs, and experiences related to accessing treatment. The accounts of PWIDs in small town settings were important, as these communities encounter their own specific challenges. Throughout this process, we gained a broad picture of why DAA treatment uptake stalled.
The regular sessions gave us ‘live’ and authentic accounts of what peer workers were coming across at ground level and on the streets. They generated a rapid turnaround of mid-project findings that were crucial to an evolving DAA treatment environment that were published in a series of three broadsheets in December 2018, May 2019, and October 2019.
These ‘real-time’ insights helped peer-led organisations respond quickly to community needs.
They used the findings to tailor their approaches for engaging with their communities. They created targeting messages that helped promote DAA treatment. The findings also helped them focus their advocacy agenda to improve DAA treatment policy.
Within the first 12 months of the project, we started seeing recurring themes raised by the peer workers. These included hepatitis C awareness, testing, and treatment; health care provision; the value of peer workers; and hepatitis C stigma.
People with hepatitis C who inject drugs do not have easy access to the information they need.
Peer workers noted that people in their networks did not all have the same understandings about treatment. DAA treatment was not well-publicised at sites PWID frequented, such as methadone clinics and community health centres. This leads to many PWID having incorrect or outdated knowledge about treatment side effects, eligibility, and cost. This is the kind of information people need to be able to make informed decisions about their own health.
Hepatitis C can have serious health impacts for people who inject. But peer workers tell us that this is not always their most important concern.
For people who inject, a hepatitis C diagnosis means experiencing yet another cycle of stigma and discrimination.
Many people who don’t use drugs can’t seem to understand that having hepatitis C and injecting drug use are two distinct parts of a person’s life. People with a hepatitis C diagnosis need care and support. They need information about hepatitis C — about their options, available treatment, how to be healthy on their own terms. They don’t need more conversations, arguments, or judgements about their drug use.
This happens in places where people with hepatitis C should be able to get this support: pharmacies, health services, and family homes.
Negative encounters with healthcare providers prevent people from seeking care until they are so ill, they have no other choice. On the other hand, current injectors are likely to continue using services where they have positive experiences with considerate health workers who don’t pass judgement.
Impediments to people who inject not being on treatment or not wanting to be on treatment pointed to systemic and structural issues. For many people who inject drugs, meeting daily essentials is a constant struggle.
Unsurprisingly, priorities like unstable housing and obtaining food override other non-immediate needs, including seeking medical attention.
These were just some examples of what we learned through this project. These insights can help both the community and the broader sector improve access and uptake of DAA treatment.
Valuing and acting on this kind of input from peers also creates a more person-centred and rights-based approach to healthcare delivery.
But one of the most important things to take away is that these are things we learned but they are things that people who inject drugs already know. We just needed to gain their trust and ask them.
For this researcher, it was a privileged experience of being ‘allowed in’ or accepted by peer workers and having them openly and honestly share their insights and their peer networks’ take on hepatitis C and DAA treatment.
Peer workers are highly valued by their networks. The focus group participants clearly communicated that non-peer needle and syringe programs are perceived as more ‘user-friendly’ if an identified peer worker is part of their workforce. When a service meaningfully involves peers in designing resource materials, delivering services, and peer education and outreach, the injecting community can tell that that service values them.
Finally, the full involvement of peer-led organisations as collaborators and co-authors of the broadsheets has promise of even more robust community and academic research partnership in future.
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