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Hepatitis C data justice: the implications of data-driven approaches to the elimination of hepatitis C

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posted on 2024-02-09, 03:11 authored by K Valentine, Emily LentonEmily Lenton, Kate SeearKate Seear, Suzanne FraserSuzanne Fraser, Dion KaganDion Kagan, Adrian FarrugiaAdrian Farrugia, Sean MulcahySean Mulcahy, M Edwards, D Jeffcote
The World Health Organization’s goal of achieving hepatitis C elimination by 2030 is inspiring the use of novel methods to find, diagnose and treat people living with the virus. Globally, rates of hepatitis C treatment uptake have declined. Data-driven public health approaches, including case finding, notification and contact tracing, are being developed and implemented to reach the elimination goal. Drawing on interviews with policymakers, lawyers, peers and others who work with people with hepatitis C, we analyse perceptions of the use of data-driven interventions to achieve elimination, and concerns about risks. While interviewees expressed some enthusiasm for data-driven interventions, they were apprehensive about the possible effects of data collection processes and systems and/or believed that people with hepatitis C were. They noted concerns about the sharing of people’s health data without active consent, and worried that data-driven approaches could perpetuate hepatitis C-related stigma and discrimination. We explore these concerns through the concept of data justice, which helps to account for complexities, risks, and challenges. We argue that data-driven interventions to increase access to treatment will be effective and beneficial only if they also address, or at least do not increase, the barriers to treatment caused by stigma, criminalisation and structural inequities faced by many people with hepatitis C. Such interventions should also be designed to mitigate the limitations of the most usual models of data collection and use.

Funding

This work was supported by the Australian Research Council under Grant [DP200100941]. The views expressed are the authors' own.

History

Publication Date

2023-12-01

Journal

Critical Public Health

Volume

33

Issue

5

Pagination

11p. (p. 803-813)

Publisher

Taylor & Francis

ISSN

0958-1596

Rights Statement

© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.

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