BACKGROUND: In Australia, the unrestricted and subsidised availability of direct-acting antivirals for people living with hepatitis C has made the elimination of hepatitis C possible. Recent declining treatment uptake, however, may jeopardise the attainment of this goal. Notification data already exist in many jurisdictions but are presently under-utilised. Despite growing interest in the potential use of data to link people diagnosed with hepatitis C to treatment services, little evidence exists on the acceptability and feasibility of this approach. Our study aimed to address this gap and guide future strategies to enhance treatment uptake. METHODS: Twenty-seven people with lived experience of injecting drug use and/or hepatitis C participated in two focus groups exploring views on implementing a system of hepatitis C notification follow-up in Australia, that would direct people to treatment and care. Additionally, qualitative interviews were conducted with 20 key informants to examine the ethical, logistical, and regulatory implications of implementation. Data were thematically analysed using the Theoretical Framework of Acceptability - which has been used to assess the acceptability of interventions from the perspectives of intervention deliverers and recipients. RESULTS: While there were clear reservations, there was consensus that the potential benefits of using notification data to contact people with hepatitis C, outweigh harms. The method of contact (including by whom and how), whether follow-up should include recent versus historical diagnoses, and if record linkage should be used to enhance follow-up were important considerations. Ethical and logistical concerns were raised about the risk that such an approach could exacerbate stigma and discrimination. CONCLUSION: Findings highlight potentially significant benefits of using notifications data to increase access to hepatitis C treatment, a novel approach that can contribute to hepatitis C elimination efforts and prevent hepatitis C-related morbidity and mortality.
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This project is as an initiative of the Eliminate Hepatitis C Australia
(EC Australia) partnership, which is funded by the Paul Ramsay Foundation. Prof Mark Stoové has received investigator-initiated funding from
Gilead Sciences, AbbVie and Bristol Myers Squibb for research unrelated
to this work. Dr Alisa Pedrana has received speaker fees from Gilead Sciences and receives funding from Gilead Sciences, Abbvie and Merck for
investigator-initiated research. Prof Margaret Hellard and A/Prof Peter Higgs have received funding from Gilead Sciences and Abbvie for
investigator-initiated research. Prof Carla Treloar has received speaker
fees from Gilead and Abbvie, and research funding (for an unrelated
project) from Merck. A/Prof Joseph Doyle’s institutions have received
funding for unrelated investigator-initiated research from Gilead Sciences, Abbvie, Merck and Bristol Myers Squibb, and consultancies from
AbbVie and Gilead Sciences. Dr Shelley Walker received funding via an
Australian Postgraduate Research (APR) Intership.