Abstract
BackgroundPeer-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.MethodsThis 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 studyResultsThe 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.ConclusionsRecognizing 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.
Highlights
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
These peer organizations have expanded the dissemination of injecting equipment and social practices for safer injection, as well as disseminated knowledge that PWUD can use in everyday life to navigate the contextual pressures that weigh against safer use [11, 14,15,16,17,18,19]
The results suggest that PWUD peer organizations need the resources to demonstrate the validity of their connection and influence within their communities, and to enhance and maintain their capacity to meet the demands of implementing and sustaining meaningful participation across research and policy
Summary
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. Peer-based programs and organizations have been an integral part of health promotion and service delivery with people who use drugs (PWUD) for decades [1, 2] They originated in Western Europe and North America in the late 1960s and evolved, developed, and expanded in response to emerging epidemics of HIV and hepatitis C in the 1980s and 1990s [3, 4]. PWUD have demonstrated that their organized peer-based response is a key component of effective national strategies for the public health response to HCV and HIV [2, 11, 13] These peer organizations have expanded the dissemination of injecting equipment and social practices for safer injection, as well as disseminated knowledge that PWUD can use in everyday life to navigate the contextual pressures that weigh against safer use (including policing, criminalization, stigma, and discrimination) [11, 14,15,16,17,18,19]. PWUD peer organizations are themselves vulnerable to, and must navigate, tensions between support for harm reduction-based health promotion and the stigmatization, prohibition, and criminalization of drug use which can undermine such support [20, 21]
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