Author: Dr Susan Chong, Senior Lecturer in La Trobe University’s Department of Public Health and Senior Research Fellow on ARCSHS’ Peer Insights Project
The W3 Peer Insights Project sought to understand the peer insights of people who inject drugs about their update of direct-acting antiviral (DAA) treatment.
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.
The W3 Peer Insights Project focussed on translating their knowledge into resources to help improve Australia’s hepatitis C response.
In this post, the project’s lead investigator Dr Susan Chong shares 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.
The new direct-acting antiviral (DAA) medicines can cure hepatitis C. They are also 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 and who also have hepatitis C.
Many people who inject drugs were wary of the healthcare system. They were also reluctant or sceptical about the new treatment.
It was apparent that different strategies were needed in order to reorient services and engage people who inject drugs to enable and encourage them to seek treatment.
However, 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.
Peer workers in programs led by people who inject drugs have a wealth of experiences and knowledge. Their peer insights are vital assets that can feed into strategies to scale up DAA treatment.
Project aims and methods
This project was designed to help convert peer insights into usable information for the hepatitis C response. It was an 18-month collaboration between ARCSHS and three organisations led by people who use drugs:
These organisations co-designed the project and were equal partners with ARCSHS. This proved crucial for both 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.
What peer workers taught us
Peer workers shared their real-time, on-the-ground insights about the current attitudes, beliefs, and experiences related to accessing treatment among people who inject drugs.
Throughout this process, we gained a broad picture of why DAA treatment uptake stalled.
The accounts of people from small town settings were important, as these communities encounter their own specific challenges.
The regular sessions gave us ‘live’ and authentic accounts of what peer workers were coming across at ground level and on the streets. They allowed us to generate a rapid turnaround of mid-project findings that were crucial to a changing DAA treatment environment.
These ‘real-time’ insights also helped peer-led organisations respond quickly to community needs.
They used the findings to:
- Tailor their approaches for engaging with their communities.
- Create targeting messages that helped promote DAA treatment
- 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
- Hepatitis C stigma
People with hepatitis C who inject drugs do not have easy access to necessary information about DAA treatment
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 people who inject drugs frequented, such as methadone clinics and community health centres.
This leads to many people who inject having incorrect or outdated knowledge about treatment side effects, eligibility, and cost. This is the kind of information people need to enable them to make informed decisions about their own health.
For people who inject, a hepatitis C diagnosis means experiencing yet another cycle of stigma and discrimination
Many people who don’t use drugs also don’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.
However, this stigma happens in places where people with hepatitis C should be able to find non-judgemental 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.
People living with hepatitis C who inject drugs often have more pressing priorities than hepatitis C treatment
Impediments to people who inject not being on (or not wanting to be on) treatment pointed to systemic and structural issues.
Hepatitis C can have serious health impacts for people who inject. However, peer workers tell us that this is not always their most important concern.
For many people who inject drugs, meeting daily essentials is a constant struggle.
Not surprisingly, priorities like finding stable housing and food override other non-immediate needs, including seeking medical attention.
The importance of valuing and acting on peer insights
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.
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.
Valuing and acting on peer input from peers creates a more person-centred and rights-based approach to healthcare delivery.
Peer workers are highly valued by their networks.
The focus group participants made it clear that their communities perceive non-peer needle and syringe programs as more ‘user-friendly’ if they employed an identified peer worker.
The injecting community can tell that a service values them when it meaningfully involves peer in:
- Designing resource materials
- Delivering services
- Providing education and outreach
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 the future.
The following broadsheet series, published during the Peer Insights Project, presents the project’s findings.
Hepatitis C treatment: Peer insights on barriers and motivators to Direct-Acting Antiviral (DAA) treatment uptake — Broadsheets:
The W3 Peer Insights Project received funding from the Commonwealth Government Department of Health.