The use of people’s personal health data has occurred in one form or another for many decades. For example, health information gets collected in state and national systems of ‘notifications’, as part of the routine surveillance of communicable diseases. The systems of notifications used to track Covid-19 cases brought these types of data facilities to people’s attention around the world. We are more aware of these systems – and arguably more concerned about them — as technologies for data collection, data sharing, and data (re-)use have improved, and as awareness of their risks have deepened. In Australia, the large-scale scandal that has come to be known as ‘Robodebt’ has heightened concerns over the use of data technologies, particularly for vulnerable and disadvantaged people. Similarly, the hacking of Medibank Private involved a huge breach of private health insurance data that was weaponised by hackers in attempts to extort people with medical conditions, including heavily stigmatised ones like sexually transmitted infections.
In our research, we have discovered that people affected by hepatitis C may be particularly vulnerable to the use and mis-use of health data for at least three reasons. First, hepatitis C is a highly stigmatised condition linked to illicit drug injecting, and the disclosure of people’s hepatitis C status, or past status, can have a range of negative implications for them. Second, because hepatitis C is a ‘notifiable condition’ under blood-borne virus testing policies and regulations, a diagnosis of the virus means that private information about a person, including their name, where they live, and likely mode of infection is recorded as an official state notification. And third, new approaches to (re-)using notifications (and other) data to ‘case find’ people with the virus have begun to develop recently as part of Australia’s ambitious public health aim to eliminate hepatitis C. This elimination agenda involves getting hepatitis C treatment to as many people as possible—which promises to improve many people’s health. However, as we have discussed in earlier publications, the use of data in notifications data in this way raises concerns about privacy and consent.
As part of the ‘Post-cure lives’ study, a three-year national research project on hepatitis C-related stigma and discrimination in a post-cure world, we asked policymakers, lawyers, peers, service workers and others who work with people affected by hepatitis C how they felt about these issues of health data and its re-use. These were questions that were included as part of a broader discussion of the current hepatitis C response, and how new treatments and the aim to eliminate hepatitis C are changing the experience of people affected by the virus. While our interviewees expressed some enthusiasm for data-driven interventions aimed at getting treatment to more people, they were also apprehensive about the potential risks embedded in data collection processes and systems, and believed that people with (a history of) hepatitis C were too. They were especially concerned about the sharing of people’s health data without their express consent, and worried that data-driven approaches could perpetuate hepatitis C-related stigma and discrimination. Our latest article, led by kylie valentine and Emily Lenton, and recently published in Critical Public Health, explores these concerns and considers approaches to addressing them.
One approach is the concept of data justice, which highlights the importance of justice to data, and the ways that data can be used (inadvertently or by design) to perpetuate injustice. Data justice has been used by other researchers, both in health contexts and beyond, including in discussions of HIV surveillance, for example. The concept helps to recognise, first and foremost, that data relating to people’s health are not merely neutral, but can be loaded with meanings that have real-life implications. The concept also helps to recognise that the systems that produce and manage data, like state notifications systems, are also not neutral, and can work to entrench social inequalities. Importantly, data justice shows how government and healthcare agencies using new technologies to manipulate data in certain ways to achieve certain outcomes – like finding and treating more people with hepatitis C in order to try to eliminate the virus – needs to happen in conversation with the communities these processes affect. In more simple terms: what we do with data needs to be done carefully, and to meet the needs of the people whose data are being used.
These questions of data use and data justice are complex, but they are becoming more urgent in our ‘datafied’ society. In the case of hepatitis C, new technology enables more rapid linking of testing data with treatment data. This is exciting, as it may help cure more people with the virus; but it raises ethical, legal and technical questions and concerns. While these questions and concerns are complex, addressing them is crucial. Our analysis suggests that data justice is one approach to new uses of data that can help protect individual privacy and preserve processes of informed consent in health care alongside other aims, like eliminating hepatitis C.
To read more about hepatitis C and data justice, access the article in full here.
Citation: valentine, k., Lenton, E., Seear, K., Fraser, S., Kagan, D., Farrugia, A. & Mulcahy, S. ‘Hepatitis C data justice: The implications of data-driven approaches to the elimination of hepatitis C’ Critical Public Health https://doi.org/10.1080/09581596.2023.2287959