This last week, as we farewelled Annie Madden, who has been CEO of the Australian Injecting and Illicit Drug Users League (AIVL) since 2000, we are reminded of the significance and importance not just of the work that Annie has done, but of the centrally important role that people who use drugs can, do and should play in both research and policy development.
The prevailing evidence-based policy paradigm facilitates and privileges research knowledge, both in terms of the particular kind of evidence that research provides and the authority afforded to researchers when they speak. Daily, researchers are asked to be experts on committees, provide comment in the media, disseminate latest research findings and provide advice to decision-makers. These authoritative, expert forums are often removed from the everyday, lived experiences of people’s lives. In the face of ‘authoritative’ and ‘legitimised’ research evidence, the wisdom gleaned through local knowledge and lived experience can sometimes be side-lined or its value diminished. As the global consumer participation movement’s catch-cry of “nothing about us without us” reflects, it is essential that people most closely affected by policy decisions are actively involved and valued in decision-making processes.
A federal drug summit was held on 2 March, 2016 with around 60 experts present – clinicians, researchers and policy advocates. During the summit we canvassed issues such as criminal sanctions for use/possession, treatment services and associated funding, cannabis legalisation, drug testing services for people who use drugs, regulation of new psychoactive substances, harm reduction interventions, the role of prisons, and public health responses. The importance of political leadership, effective co-ordination of state-federal relationships, strategies to shift resources towards health responses and bipartisanship were all emphasised.
But perhaps the most profound parts of the day came from those who represent people who use drugs. It is no easy matter to identify as someone who uses drugs. When we speak out in a public place, we identify ourselves to our community. Identifying oneself as a drug user or as sympathetic to drug users in a public setting carries a strong likelihood of stigma, discrimination, and civil or criminal penalties. But these voices are essential. When these voices spoke, we were reminded that people who use drugs are not statistics or a ‘problem to be addressed’, but rather that “we are your family members, your friends, your colleagues – not some collateral damage”.
We need to value and incorporate the voices of those who use drugs into both research processes and policy processes. And we need explicit strategies and processes for doing this. The role that the community most affected by policy can play in sharing personal experience and knowledge and counterbalancing discriminatory (or uninformed) opinions in policy deliberation is recognised and valued in other policy domains (and areas of healthcare), and held up as an important ethical consideration. Indeed, it has been said that one way of responding to stigma is to involve marginalised individuals in the policy-making process (Lancaster, Ritter & Stafford, 2013). The same is true of research processes. People who use drugs are more than just participants in research studies; they are key stakeholders and should be meaningfully engaged in research in terms of formal governance (for example on project advisory boards), joint planning, and through quality collaboration to shape research questions, design, data collection, analysis and, perhaps most importantly, interpretation and translation. Such engagement must reach beyond ‘ticking the box’ of consultation, and strive for meaningful partnership throughout the policy or research development process.
A special issue of the journal Substance Use & Misuse focused on the successful programs and roles of drug user organisations in promoting the goals of public health internationally, including increasing access to drug treatment. This international publication noted Australia’s position as a world leader in the establishment and maintenance of peer-based organisations since the 1980’s, and that AIVL has “served as a major resource for efforts to organize globally throughout this period” (Friedman, Schneider, & Latkin, 2012, p. 569). One example of impact, as given in the TrackMarks study (AIVL, 2012) is where an intuitively appealing blood-borne virus prevention technology (retractable needles and syringes) was shown to be potentially damaging, through the local knowledges brought to the discussions by people who use drugs, who had specialised situated and contextualised knowledge to bring to the discussions.
Researchers occupy a privileged position in policy development – as knowledge brokers and experts called to advise on alcohol and other drug policy matters. We believe researchers have a responsibility to be mindful of this privilege. All research rests on a range of assumptions and worldviews, and is inherently political. What we choose to focus on (or ignore), the language we choose to use, the questions we ask, what we see as important, the methods we employ, and how we choose to interpret and report findings represent underlying values and assumptions. The failure to recognise and name these underlying values or lenses through which we see the world assumes that researchers are objective ‘truth-seekers’, documenting facts or dealing with issues which exist ‘out there’ waiting to be solved.
The leadership that Annie Madden has given us and the sector in relation to working with and representing people who use drugs has been exceptional. Her legacy will be the ways in which all of us (researchers) seek to meaningfully engage with the community of people who use drugs, involve them in selecting research questions, designing research studies, interpreting research data, documenting the findings and communicating these findings back to the community. Striving for quality engagement and true partnership with people who use drugs at every stage of both research and policy processes, will lead to reduced stigma and discrimination, empowerment, capacity building, and most importantly, meaningful policies which draw on the best available knowledge from across multiple expertise and experiences. As Annie said, “People who use drugs are one of the biggest resources we have to deal with drug issues” (Annie Madden 2/3/16).