“It's time!”: A qualitative exploration of the acceptability of hepatitis C notification systems to help eliminate hepatitis C

Walker, Shelley; Wallace, Jack; Latham, Ned; Saich, Freya; Pedrana, Alisa; Hellard, Margaret; Treloar, Carla; Marukutira, Tafireyi; Higgs, Peter; Doyle, Joseph; Stoové, Mark

doi:10.1016/j.drugpo.2021.103280

Cited by 4 publications

(2 citation statements)

References 33 publications

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“…For instance, in the social science literature people who inject drugs often describe a tenuous relationship with service providers that was not experienced by those in our sample. Among people who inject drugs stigma and poor treatment from health service providers often dissuades health service engagement, along with difficulties, such as organising appointments and transport [ 35 ]. Though instances of stigmatising treatment were reported by our sample when they visited services, this was not the dominant experience, nor was it described as a deterrent to future service access.…”

Section: Discussionmentioning

confidence: 99%

Injection drug use in an affluent beachside community in Sydney: An exploratory qualitative study

Dertadian

Caruana

Maher

2022

Drug and Alcohol Review

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Introduction: Social research on injection drug use has focussed on marginalised groups and communities, leaving a large gap in the field's understanding of how it is experienced in other settings, including in relatively affluent communities. Methods: This research is based on fieldwork and 18 in-depth qualitative interviews conducted in suburban beach-side communities in Sydney collectively known as the Northern Beaches. Results: Participants did not experience stigmatisation by local health services as the norm or as a deterrent to access. Drug acquisition on the Northern Beaches occurred among closed networks of friends and acquaintances, and injecting use rarely occurred in public settings. Police contact was minimal, resulting in lower levels of criminalisation.Discussion and Conclusions: Unlike many of the participants featured in the literature, our study participants grew up in middle and upper middle-class households, typically experiencing comfortable childhoods with little to no exposure to injection drug use. In this setting injection drug use operates covertly within the normal rhythms of middle-class life, hidden in amongst the bustle of cafés and shopping centres, and through the friendliness of neighbourhood driveway and doorstep interactions. Drug use is described as common in the area, with injecting behaviours stigmatised in ways that set it against the 'good' families and neighbourhoods of this beach-side enclave. In contrast to much of the Australian qualitative literature which frames injection drug use as a means of psychological relief or a subcultural norm, our participants described injecting as motivated by the desire to enhance pleasure and social connection. K E Y W O R D S affluent, injection drug use, middle-class, qualitative research, stigma Key point • Study participants grew up in middle and upper middle-class households with little to no exposure to injection drug use. • On the Northern Beaches of Sydney injection drug use operates covertly within the normal rhythms of middle-class life. • In contrast to much of the Australian qualitative literature, our participant described injecting as motivated by the desire to enhance pleasure and social connection.

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Section: Discussionmentioning

confidence: 99%

Injection drug use in an affluent beachside community in Sydney: An exploratory qualitative study

Dertadian

Caruana

Maher

2022

Drug and Alcohol Review

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“…However, a qualitative exploration of the acceptability of hepatitis C notification systems study conducted with key informants including those with hepatitis C lived experience informed the study intervention. 32 …”

Section: Methods and Analysismentioning

confidence: 99%

Randomised controlled trial of active case management to link hepatitis C notifications to treatment in Tasmania, Australia: a study protocol

Marukutira

Moore²,

Hellard

et al. 2022

BMJ Open

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IntroductionBy subsidising access to direct acting antivirals (DAAs) for all people living with hepatitis C (HCV) in 2016, Australia is positioned to eliminate HCV as a public health threat. However, uptake of DAAs has declined over recent years and new initiatives are needed to engage people living with HCV in care. Active follow-up of HCV notifications by the health department to the notifying general practitioner (GP) may increase treatment uptake. In this study, we explore the impact of using hepatitis C notifications systems to engage diagnosing GPs and improve patient access to treatment.Methods and analysisThis study is a randomised controlled trial comparing enhanced case management of HCV notifications with standard of care. The intervention includes phone calls from a department of health (DoH) specialist HCV nurse to notifying GPs and offering HCV management support. The level of support requested by the GP was graded in complexity: level 1: HCV information only; level 2: follow-up testing advice; level 3: prescription support including linkage to specialist clinicians and level 4: direct patient contact. The study population includes all GPs in Tasmania who notified HCV diagnosis to the DoH between September 2020 and December 2021. The primary outcome is proportion of HCV cases who initiate DAAs after 12 weeks of HCV notification to the health department. Secondary outcomes are proportion of HCV notifications that complete HCV RNA testing, treatment workup and treatment completion. Multiple logistic regression modelling will explore factors associated with the primary and secondary outcomes. The sample size required to detect a significant difference for the primary outcome is 85 GPs in each arm with a two-sided alpha of 0.05% and 80% power.Ethics and disseminationThe study was approved by University of Tasmania’s Human Research Ethics Committee (Protocol ID: 18418) on 17 December 2019. Results of the project will be presented in scientific meetings and published in peer-reviewed journals.Trial registration numberNCT04510246.Trial progressionThe study commenced recruitment in September 2020 and end of study expected December 2021.

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The Application of Australian Rights Protections to the Use of Hepatitis C Notification Data to Engage People ‘Lost to Follow Up’

Saich,

Walker,

Hellard

et al. 2024

Public Health Ethics

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Hepatitis C is a global public health threat, affecting 56 million people worldwide. The World Health Organization has committed to eliminating hepatitis C by 2030. Although new treatments have revolutionised the treatment and care of people with hepatitis C, treatment uptake has slowed in recent years, drawing attention to the need for innovative approaches to reach elimination targets. One approach involves using existing notifiable disease data to contact people previously diagnosed with hepatitis C. Within these disease surveillance systems, however, competing tensions exist, including protecting individual rights to privacy and autonomy, and broader public health goals. We explore these issues using hepatitis C and Australia’s legislative and regulatory frameworks as a case study. We examine emerging uses of notification data to contact people not yet treated, and describe some of the ethical dilemmas associated with the use and non-use of this data and the protections that exist to preserve individual rights and public health. We reveal weaknesses in rights protections and processes under Australian public health and human rights legislation and argue for consultation with and involvement of affected communities in policy and intervention design before notification data is used to increase hepatitis C treatment coverage.

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“It's time!”: A qualitative exploration of the acceptability of hepatitis C notification systems to help eliminate hepatitis C

Cited by 4 publications

References 33 publications

Injection drug use in an affluent beachside community in Sydney: An exploratory qualitative study

Injection drug use in an affluent beachside community in Sydney: An exploratory qualitative study

Randomised controlled trial of active case management to link hepatitis C notifications to treatment in Tasmania, Australia: a study protocol

The Application of Australian Rights Protections to the Use of Hepatitis C Notification Data to Engage People ‘Lost to Follow Up’

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