Annie Madden Executive Officer Australian Injecting & Illicit Drug Users League (AIVL)

1. Evaluating the role of drug user organisations in Australian drug policy processes: Findings from “TrackMarks” Annie Madden Executive Officer Australian Injecting & Illicit Drug Users League (AIVL)

2. Overview • “TrackMarks” • What is “TrackMarks”? • Why “TrackMarks”? • What are the key elements of “TrackMarks”? • “TrackMarks” – the Report • Overview & background to research • Methodology • Key Findings • Conclusions & Future Implications

3. What is “TrackMarks”? • Combined consumer-driven research and documentation (living history) project; • Conducted by AIVL and funded and supported by DPMP; • Commenced in 2008 and continuing to implement ongoing and additional aspects of the project; • Broad aim & focus: • to explore consumer participation in Australian drugs policy; • to document and evaluate the contribution of drug user organisations and people who use drugs (PWUD) to the formulation and implementation of drug policy processes in Australia; • create an online & interactive ‘living history’ space.

4. Why“TrackMarks”? • DPMP was interested in supporting a consumer-driven project to examine the role of PWUD and organisations representing PWUD in Australian drug policy; • Coincided with: • AIVL’s desire to document & archive a fundamental aspect of our work that was under-recognised, not well understood and at risk of being ‘lost to history’; • Beginnings of discussions within Australian AOD sector on consumer participation in relation to service planning and delivery (linked to AIVL TSU Project which commenced in 2005); • National Drug Strategy: Australia’s Integrated Framework 2004-2009 – identified partnerships with affected communities as one of four critical success factors; • Growing acknowledgement at the international level on the importance of the meaningful involvement of people who use drugs (MIPUD) in developing effective, evidence-based drug policy.

5. Why“TrackMarks”? “Nothing About Us Without Us: Greater, Meaningful Involvement of People Who Use Illegal Drugs: A Public Health, Ethical & Human Rights Imperative”

6. Why“TrackMarks”? • Agreeing to undertake a research project was the easy part! • The difficulty was identifying the right approach to document both the contribution to drug policy by Australian drug user organisations over more than 20 years and identify the key principles, barriers and enablers to that involvement and engagement; • Undertook and national consultation and established an expert advisory committee; • “TrackMarks” – arrived at through a national competition; • Evoked – “tracks” through and across time, “tracks” that led you to and away from places, “tracks” that take you on journeys and of course, “tracks” that are the ‘marks’ of a history of injecting – “TrackMarks” just seemed right.

7. Key Elements of “TrackMarks” • Clear from the start that “TrackMarks” was (and continues to be) an ambitious, ground-breaking project which for the first time would: • Attempt to document key aspects of the history of drug user organising in Australia; and • Evaluate the contribution of drug user organisations and PWUD to Australian drug policy processes. • The key elements of the project are: • Online historical archive and timeline; • In-depth documentation on 7 key drug policy issues; • Key resources to support meaningful participation; • National research consultation and report.

8. “TrackMarks” - The Report Overview and Background to the Research: • Already commenced collaborative research into consumer participation in drug treatment settings; • Logical next step to undertake collaborative research into meaningful engagement of PWUD and DUO in drug policy more broadly; • General themes to be examined: • PWUD/DUO contributions to Australian drug policy • Expectations Vs. Experience of consumer participation • Documenting good and poor practice examples • Identifying what constitutes meaningful engagement • Potential benefits of such engagement in the policy formulation/development process. • Ultimately the aim of research phase was to increase understanding of meaningful engagement with PWUD and to document how this engagement can lead to better policy outcomes in the long term.

9. “TrackMarks” - The Report Overview and Background to the Research: • Important that TrackMarks national consultation research built upon existing social theory/knowledges within the social sciences about the nature of policy and influencing policy change; • As the notion of “policy” lay at the heart of the entire project – defining “policy” was a fundamental starting point for the research phase: “a statement of government intent, and its implementation through the use of policy instruments” (from Australian Policy Handbook, 2007) • Strength of above definition – captures what govt state they are ‘planning’ to achieve AND the ‘actual’ implementation process & outcomes; • Important to note: ‘failing’ to take action on an issue reflects policy as much as ‘implementing’ a program does. • Although this research was focused on ‘government policy’ for the most part, we did note that of course policy has broader implications/definitions – partic in this context service/org level policy.

10. “TrackMarks” - The Report Overview and Background to the Research: • Underlying AIVL’s interest in PWUD/DUO engagement in drug policy activity is the ‘desire’ to ‘influence’ drug policy in such a way as to improve the health and human rights of PWUD; • This raises the question of what we know about the processes through which policy is made? Without this understanding – our capacity to influence policy activity is limited; • While recognising there are many models of policy influence/how policy is made - we used the 4 most prominent in the literature: • The rational/comprehensive model • The incrementalism model; • The multiple streams model; • The advocacy coalitions model. • Above policy influence models combine with research influence models to create policy activity (engineering, enlightenment, engagement).

11. “TrackMarks” - The Report Methodology: • Collaborative Research Project – David McDonald (Social Research & Evaluation), AIVL and members of EAC drawn from the AIVL network membership; • Research Objectives: • To document the contributions of drug user organisations, and people who use illicit drugs, to the development of drug policy in Australia over the last 20 years; • To identify key principles that underlie the meaningful engagement of people who use illicit drugs and peer-based drug user organisations in drug policy activity; and • To identify barriers and facilitators of meaningful engagement, such that people whose role it is to develop drugs policy, primarily in government agencies, are able to make more informed policy decisions.

12. “TrackMarks” - The Report Methodology: • Mixed methods embedded design – quantitative data embedded predominantly in a qualitative design; • Mixing occurred at the design, data analysis and interpretation levels; • Main data collection – online survey tool (Survey Monkey) live - 2009 • Undertaken by key informants – largely from peer-based DUOs (broad selection of new/more experienced participants) and others knowledgeable about DUOs; • Had anticipated a small number of one-to-one interviews – determined that the data capture in the survey’s narrative components allowed for adequate level and depth of analysis; • Promotion through AIVL E-list, direct emails, follow-up calls; • Successful recruitment – 129 respondents, wide range of orgs, all s/t responded, over 30 people provided detailed narrative responses; • Ethics approval – ANU Science/Medicine Delegated ERC.

13. “TrackMarks” - The Report Methodology: • Respondents – from all states and territories; • DUO/peer-based programs in which respondents were currently working: • NUAA HRV • AIVL QuIHN/QuIVAA • SAVIVE WASUA • CAHMA PHAAT • TUF The Connection • Others: AIDS/Hep Councils, Drug Treatment Services, Research Institutes, Govt Depts,; • Also asked people about DUO involvement at ANY TIME – reflected a much larger list of current and past peer-based DUOs.

14. “TrackMarks” - The Report Key Areas of Investigation: Note: very difficult in survey to bring out full extent of the work that DUOs have undertaken in the policy sphere – much remains untold/unrecognised: • Responses summarised in five main areas: • Aspects of policy activity the have been addressed; • Methods used to influence policy; • The outcomes of applying these methods; • Factors that facilitate DUOs influencing policy; and • Factors that impede DUOs from influencing policy. • Current levels of participation – using a ‘ladder of participation’ approach and identified key issues; • Benefits of meaningful engagement and future perceptions.

15. “TrackMarks” - The Report • Aspects of policy activity the have been addressed: • Wide range of activities aimed at creating, influencing or changing aspects of drug policy; • Responses clustered into key areas of – drug treatment (partic. OPT), blood borne viruses, human rights, stigma, discrimination, drug law reform, harm reduction, peer education, DUO development/survival; • Many respondents noted the importance of recognising the personal connection to the policy issues they have tried to influence and how advocates can feel emotional, high level of obligation, not a ‘objective’ or abstracted experience, can have personal impact (both positive and negative).

16. “TrackMarks” - The Report • Methods used to influence policy: • External methods – media advocacy, letters to editors, public advertisements, op eds, form letters, petitions, consumer forums, etc; • Direct engagement with policy makers/advisers – dialogues with policy officers, meetings with/lobbying parliamentarians/advisers, members of policy advisory bodies, using research (peer-based and in partnership),submissions to govt enquiries, seizing opportunities to correct mis-information; • Community organising and direct action – also have been significant either alone or in partnership including protests; • Research influence models – all utilised to some degree (how effectively?) such as presenting evidence based on research, policy briefing papers (engineering), attempting to influence broad public opinion using external methods above (enlightenment) and in dialogue with decision makers through cttee representation, meetings, presentations (engagement).

17. “TrackMarks” - The Report • Outcomes of applying these methods: • Mixed results but most respondents had no difficulty identifying a range of positive effects and outcomes (some highly tangible/others more process oriented/diffuse): • Influencing policy and research agendas/funding (govt strategies); • Improving understanding of issues for PWUDs/shifting attitudes; • Gaining funding for DUOs or peer programs/services; • Successfully advocating for peer/consumer representatives; • Inclusion of HR approaches in govt policies and programs; • Revising or improving drug treatment guidelines/services; • Improved quality of services for PWUD; • Improving the human rights of PWUD through changes in policy, laws and practice (police @ NSPs, ambos @ O/Ds, legal challenges to discriminatory practices, stopped changes to laws); • Ceased potentially harmful pilot programs (retractable syringes); Note: purpose of covering 7 key policy areas on TMs website.

18. “TrackMarks” - The Report • Outcomes of applying these methods: • Important to note very mixed feelings in this part of the survey about ‘outcomes’ and the extent to which people felt changes were or weren’t directly attributable to DUOs and their work; • Majority of respondents could identify concrete positive outcomes they have witnessed; • Some were less sure about the success of their own attempts to influence policy outcomes – this relates directly with later findings on barriers and facilitators of meaningful involvement; • In measuring success it is important to note the role of expectations – drug law reform – can be positive indications for the need for change but it doesn’t make it happen – some indicated no real expectation of success – need to view success progressively; • Also the issue of ‘minor improvements’ Vs. ‘systemic’ change – is only systemic level change ‘success’? • Minority felt ‘ineffectual’ despite working hard and trying many strategies to support policy change; • Overall respondents feel they’d witness good & bad change overtime.

19. “TrackMarks” - The Report • Factors that facilitate DUOs in influencing policy: • A variety of factors identified as facilitators of policy change that occurred wholly or partially through work of DUOs – some created by DUOs themselves others had more diffuse origins; • Key facilitating factors identified were: • Participation by the people affected/PWUD/consumers; • Skills, capacity of DUO/peer representatives to speak (partic. in public), writing skills, policy analysis/research skills, access to training, etc; • Access to relevant information/research to the policy issue/area; • Willingness of DUOs and other key individuals and organisations to collaborate as equal partners in creating policy change/ trust; • Established relationships with people in policy decision making/advisory roles, existing networks and a valuing of drug user involvement; • Funding for DUOs – critical in crating a ‘track-record’ as effective advocates who can work with others to achieve important outcomes; • Attitudes and values of health professionals and policy staff towards PWUD; • A more enabling environment that does not criminalise PWUD. Note: could form basis of checklist for meaningful engagement of PWUD in drug policy.

20. “TrackMarks” - The Report • Factors that impede DUOs in influencing policy: • A variety of factors identified as impeding policy change – some created by DUOs themselves others more external origins; • Key ‘internal’ & ‘external’ impediments identified were: • Lack of policy experience within DUOs or representatives of PWUD; • An over-reliance on ‘peer-knowledge’ without also having good knowledge of latest research evidence, current practice, etc; • Over-complex or cumbersome decision making processes with DUOs, not receiving timely responses within the AIVL national network; • Backlash from poorly thought out direct action campaigns; • Attitudes of the public and key powerful individuals that fuel stereotypes and hatred towards PWUD; • General discrimination in the community and stigma and marginalisation; • Conservative political environments, extreme ’risk aversion’, lack of interest in drug policy change, prohibition; • Reluctance of PWUD to speak in public; • Lack of funding for DUOs/restrictions in funding contracts re: advocacy; • Getting PWUD reps on high level decision making cttees & being heard.

21. “TrackMarks” - The Report • Ladder of Participation: • Seven ‘levels’ of participation – from ‘none’ to ‘have control’; • Asked what best describes their overall view of current situation; • Most respondents (46.9%) believe DUOs currently ‘advise’ on drug policy – policy body presents draft policy, invites questions, prepared to modify the policy only if absolutely necessary – this sits in the middle of the ladder; • 25% believe DUOs are ‘consulted’; • 9.4% said they ‘receive information; and • Another 9.4% believe DUOs are not involved in policy-making processes, neither by initiating, developing, evaluating nor revising drug policies; • Moving up the ladder from ‘advise’ – only 6.3% said DUOs ‘plan jointly’, 3.1% said DUOs ‘have policy delegated’ (policy body asking DUO to make policy recommendations to be accepted by policy body) and the highest rung ‘have control’ received no responses.

22. “TrackMarks” - The Report • Key Issues in relation to levels of participation: • Tokenism – questioning about the degree to which drug user involvement in policy processes is a genuine attempt at engagement with a number of respondents commenting that participation feel tokenistic and several people refer to ‘box ticking’ – requirements to have consumer participation for funding or accreditation or ‘window-dressing’ – so that it can be said that consultation has occurred; • Power – a number of respondents felt power imbalances hampered the contribution DUO and drug user representatives can make. People spoke of being disempowered by the very language and relationships that ‘others’ at the policy table can exhibit. • Ownership – “after all it is about drug users” – this and other comments indicated that more meaningful participation in policy processes would require a greater sense of ownership over both the process and outcomes embodied in the ‘nothing about us without us’ philosophy – it was also recognised that DUO reps need to challenge negative stereotypes through their own behaviour and build greater cohesion and coherence among user communities. • Above issues are addressed through adequate resourcing and training, respect and user reps not ‘expecting’ poor treatment.

23. “TrackMarks” - The Report • Benefits of meaningful engagement & the future: • There were many answers to the question “what benefits can flow from more meaningful engagement but they are best summed up by this quote: “Meaningful engagement means policy itself has the chance to be meaningful.” • Others referred to the “humanisation” of PWUD and the potential for stigma and discrimination to be addressed through more meaningful policy engagement; • The notion of community development and capacity building were raised in the context of ‘nothing about us without us’ – in short people are seeking empowerment. • In terms of future engagement, for many it is seen as an area of major uncertainty and highly contingent on unpredictable political factors, in particular factors that are for the most part, outside of the control of PWUD and DUOs. • Despite respondents wanting to be hopeful, there was a repeated concern that DUOs face less support and increasingly need to fight for their very survival rather than there being increased support for the rights of PWUD to participate in the issues that directly affect them.

24. Conclusion • Principles of meaningful engagement in drug policy: • The importance of engaging with a diverse range of communities affected by drug policies; • Need to acknowledge the expertise of DUOs & PWUD • Need to properly support DUOs and PWUD to participate in a meaningful way in drug policy activity • Need for open communication between stakeholders; • Need for commitment to ‘genuine’ engagement not ‘tokenism’; • Need to recognise that DUOs are under-resourced for the policy and advocacy roles they are expected to undertake; • To understand and accept that DUOs have a difficult job to do and have to represent complex issues, have obligations to community; • DUO representatives need to commit to acting in a professional manner but also recognising the personal nature of issues for them; • Commence engagement at the start not in the middle of the process; • Human rights should underpin drug policy and meaningful engagement in drug policy.