Annie Madden

Consumer participation in the planning and delivery of drug treatment services: the current arrangements

INTRODUCTION AND AIMS Consumer participation in decision-making about service planning is common in certain health services in Australia but is thought to be largely underdeveloped in drug treatment services. This paper (1) describes the current practices within Australian drug treatment services that aim to include consumers in service planning and provision; and (2) determines how much consumers know about the existing opportunities for involvement. DESIGN AND METHOD Sixty-four randomly selected service providers (representing 64 separate services) completed interviews about the current arrangements for consumer participation within their services (response rate = 82%). A total of 179 consumers completed interviews assessing their knowledge of the consumer participation activities available at the service they attended. RESULTS Consumer participation activities were not uncommon in drug treatment services, although the existing activities were concerned largely with providing information to or receiving information from consumers. Activities that included consumers in higher forms of involvement, such as those in which consumers took part in decision-making, were largely uncommon. Consumers had a considerable lack of knowledge about the participation activities available to them, revealing a lack of communication between providers and consumers. CONCLUSIONS While service providers were making efforts to engage consumers in service planning and provision (despite the general lack of State or Commonwealth policy directives and extra funding to do so), these appear ineffectual because of poor communication between providers and consumers. As a starting point, a critical part of any meaningful consumer participation initiative must include systems to ensure that consumers know about available opportunities.

HIV, HCV and health-related harms among women who inject drugs: Implications for prevention and treatment

Background:Although an estimated 3.5 million women inject drugs globally, women are outnumbered 4 to one by men who inject drugs and are often ignored or overlooked in the development and delivery of prevention and treatment services for this population. This study aimed to identify key comorbidities prevalent among women who inject drugs (WWID), consider factors that contribute to vulnerability of this population, and examine implications for prevention and treatment. Methods:The literature was reviewed to examine the specific challenges and needs of WWID. We searched health-related bibliographic databases and grey literature to identify studies conducted among WWID and studies conducted among people who inject drugs (PWID), where results were disaggregated by gender and policies/guidelines/reports relevant to WWID. Results:WWID face a range of unique, gender-specific, and often additional challenges and barriers. The lack of a targeted focus on WWID by prevention and treatment services and harm-reduction programs increases womens vulnerability to a range of health-related harms, including blood-borne viral and sexually transmitted infections, injection-related injuries, mental health issues, physical and sexual violence, poor sexual and reproductive health, issues in relation to childbearing and child care, and pervasive stigma and discrimination. Conclusions:There is a need to improve the collection and reporting of gender-disaggregated data on prevalence of key infections and prevention and treatment service access and program coverage. Women-focussed services and integrating gender equity and human rights into the harm-reduction programming will be a prerequisite if improvements in the health, safety, and well-being of this often invisible and highly vulnerable population are to be achieved.

Stigma and subjectivities: Examining the textured relationship between lived experience and opinions about drug policy among people who inject drugs

Abstract Aims: The way people who inject drugs (PWID) feel about drug policy may be profoundly shaped by lived experience of stigma and the subjectivities made available in policy and practice. Using a community-based participatory research approach, this study investigated why PWID hold particular views, and considered the complexities of how lived experience and opinions about drug policy intersect within this affected community. Methods: Three qualitative focus groups were undertaken. Participants were presented with survey results arising from a previous study, and asked to interpret and explain the possible rationales underlying the opinions expressed by their peers. Findings: A duality of opinion was identified, borne from lived experience of stigmatisation, which sometimes led PWID to qualify levels of support. By exploring the rationales underlying opinions, a tension emerged between what PWID theoretically know to be effective interventions, and experiences of how policies are delivered. A sense of “within-group” stigma emerged, with sub-groups of users and drug types denoted as more “dangerous” than others. Conclusions: This study illustrates how theoretical knowledge and lived experience intersect to inform opinions about drug policy. Through in-depth discussions with the affected community, we are reminded that public opinion research is always an interpretative and sensitive pursuit.

Candidate hepatitis C vaccine trials and people who inject drugs: Challenges and opportunities

People who inject drugs (PWID) are at high risk of HCV. Limited evidence of the effectiveness of prevention interventions and low uptake of treatment in this group highlight the need for increased investment in biomedical interventions, notably safe and efficacious vaccines. While several candidates are currently in development, field trials in PWID present challenges, including ethical issues associated with trial literacy, informed consent and standards of care. Significant biological and social factors and differences between HIV and HCV suggest that HCV warrants targeted vaccine preparedness research to lay the groundwork for successful implementation of future trials.

Knowledge about buprenorphine and methadone among those receiving treatment for opioid dependence

Aims: To ascertain the level of knowledge about some of the effects of methadone and buprenorphine among 956 clients receiving treatment for opioid dependence at 9 public clinics and 50 community pharmacies in New South Wales, Australia. Methods: A cross-sectional survey using both research-administered and self-complete questionnaires assessed medication-specific knowledge (derived from a literature review and information contained within client treatment information booklets), answered only by those receiving that treatment type. Assessment of knowledge was performed by asking participants to agree or disagree with four statements about their medication. Findings: The majority of methadone clients were aware of the risks of overdose when methadone is taken by non-tolerant people and when methadone is mixed with other CNS depressants. Methadone clients were less aware of the protective effects of methadone in overdose and most believed that it rotted their teeth. Almost 50% of those on buprenorphine were not aware of the effects of dose increase on duration of action nor its relatively good safety profile compared to methadone. Buprenorphine clients were well informed about the importance of sublingual absorption and the risks of precipitated withdrawal. Conclusions: This study identifies significant gaps in the knowledge that opioid-dependent clients have about methadone and buprenorphine that may lead to suboptimal use of medications and ambivalence over treatment. In addition to the provision of written material service providers need to consider systems to ensure that clinical information concerning treatment is received and understood by clients.

Evaluation of Consumer Participation Demonstration Projects in Five Australian Drug User Treatment Facilities: The Impact of Individual Versus Organizational Stability in Determining Project Progress

This project evaluated consumer participation projects in five drug user treatment services in metropolitan and regional areas in three Australian states. Qualitative interviews were conducted with staff and consumers at two time points between from 2010 (n = 108). At baseline staff and some consumers focused on the stability of consumers to undertake representative roles. At postimplementation, the focus was on the stability of the organization, as frequent staffing changes and lack of adequate handover affected the progress of the projects. These issues combined with the perceived “noncore” status of consumer participation resulted in none of the projects achieving all of their agreed goals.

Assessing the feasibility of hepatitis C virus vaccine trials: Results from the Hepatitis C Incidence and Transmission Study-community (HITS-c) vaccine preparedness study

Efficacy trials of preventive hepatitis C virus (HCV) vaccine candidates raise challenging scientific and ethical issues. Based on data from the first 3 years of a community-based prospective observational study - the Hepatitis C Incidence and Transmission Study-community (HITS-c) - this paper examines the feasibility of conducting trials of candidate HCV vaccines with people who inject drugs (PWID) in Sydney, Australia. Of the 166 PWID confirmed HCV antibody negative and eligible for enrolment, 156 (94%) completed baseline procedures. Retention was high, with 89% of participants retained at 48 weeks and 76% of participants completing at least 75% of study visits within 2 weeks of schedule. The rate of primary HCV infection was 7.9/100 py (95% CI 4.9, 12.7). Of the 17 incident cases, 16 completed at least one follow-up assessment and 12 (75%) had evidence of chronic viraemia with progression to chronic HCV infection estimated to be 6/100 py. Power calculations suggest a chronic HCV infection rate of at least 12/100 py (primary HCV infection rate 16/100 py) will be required for stand-alone trials of highly efficacious candidates designed to prevent chronic infection. However, elevated primary HCV infection was observed among participants not receiving opioid substitution therapy who reported heroin as the main drug injected (26.9/100 py, 95% CI 14.5, 50.0) and those who reported unstable housing (23.5/100 py, 95% CI 7.6, 72.8), daily or more frequent injecting (22.7/100 py, 95% CI 12.2, 42.2) and receptive syringe sharing (23.6/100 py, 95% CI 9.8, 56.7) in the 6 months prior to baseline. These data suggest that it is possible to recruit and retain at-risk PWID who adhere to study protocols and that modification of eligibility criteria may identify populations with sufficiently high HCV incidence. Results support the feasibility of large multi-centre HCV vaccine trials, including in the Australian setting.

‘Beyond the willing & the waiting’ — The role of peer-based approaches in hepatitis C diagnosis & treatment

This commentary seeks to examine the role, value and importance of peer-based programmatic approaches for ensuring the effective roll-out of the new hepatitis C (HCV) treatments among those most affected - that is, people who inject drugs (PWID). The authors examine recent approaches to HCV treatment in Australia including the provision of universal access to the new DAA regimens regardless of acquisition, genotype or severity of disease. These approaches are contextualised within wider global strategies to support HCV elimination as a public health threat by 2030 (WHO, 2016). Despite the unprecedented opportunity presented by the availability of the new treatments, the fact remains that those most affected by hepatitis C are still largely hidden and disconnected from the health system and are likely to stay that way without targeted education and support. There is a need to for greater investment in new and innovative HCV+ PWID peer education approaches for HCV diagnosis and treatment that add value to existing models of care to improve pathways and support people across their entire treatment journey. Key components include expanding existing peer-based programmes and developing new innovative peer initiatives, supporting the development of the PWID peer workforce, developing new, targeted peer education resources and promoting linkages and partnerships between peer based and HCV treatment service providers in primary and community settings. Our approach to HCV elimination needs to take account of peoples broader lives, their vulnerabilities, their life journeys and their potential points of connection, engagement and access. Peer-based organisations and networks provide that unique point of engagement and access for those HCV+ PWID for whom the health system is an unfamiliar even forbidding place or for whom hepatitis C can be but one of many overwhelming issues in the lives.

Beyond cure: patient reported outcomes of hepatitis C treatment among people who inject drugs in Australia

BackgroundRecent advances in the treatment of hepatitis C virus (HCV) infection provide the possibility of eliminating HCV as a public health threat. This focus on HCV elimination through treatment, however, is also driving a concomitant focus on ‘achieving cure’ as the primary outcome of treatment. The aim of this paper is to explore what people who inject drugs consider to be important in relation to outcomes of HCV treatment, and whether there are outcomes ‘beyond cure’ that might be important to understand as part of improving engagement in treatment.MethodsA peer researcher with experience of both HCV treatment and injecting drug use conducted interviews with 24 people in the following groups in Melbourne, Australia: (1) people who had refused or deferred HCV treatment; (2) people who were actively thinking about, planning and/or about to commence HCV treatment; (3) people currently undertaking HCV treatment and (4) people who had recently completed HCV treatment.ResultsThe findings show that people who inject drugs are seeking outcomes ‘beyond cure’ including improved physical and mental health, positive changes in identity and social relationships and managing future health and risk. Participants indicated that these other outcomes had not been addressed within their experience of HCV treatment.ConclusionWhile cure is an obvious outcome of HCV treatment, patients are seeking change in other areas of their lives. This study also provides valuable insights for the development of patient-reported measures in this context, which would be an important step towards more patient-centred approaches to HCV treatment.

'Towards a global approach'--an overview of Harm Reduction 2008: IHRA's 19th International Conference.

‘Towards a Global Approach’–An overview of Harm Reduction 2008: IHRA’s 19th International Conference Suzanne Fraser a, Max Hopwood b, Annie Madden c, Carla Treloar b,∗ a Centre for Women’s Studies and Gender Research, School of Political and Social Inquiry, Faculty of Arts, Monash University, Australia b National Centre in HIV Social Research, The University of New South Wales, Australia c Australian Injecting and Illicit Drug Users’ League (AIVL), Australia