Trust and digital healthcare

Attitudes towards the use of digital technologies for helping to contain the Covid-19 pandemic are shaped in large part by the degree of trust that people have in the government. This is one of the findings of an online consultation organised by Pitch-In in June 2020 to explore people’s concerns around a particularly topical question: the use of Internet of Things-related technologies for tackling the pandemic in the UK.

This workshop was the latest in the ongoing Pitch-In IoT for care – awareness-raising workshop programme. However, in a break from the format of previous events, here we engaged community philosophy specialists to help design and facilitate the consultation.

Community philosophy is a method by which a group of people can engage with common issues or questions that affect their lives. While community philosophy does not assume any specific knowledge of philosophy, it does encourage a collective exploration of themes to a greater depth than is possible within, for example, a typical focus group format.

In this case, it was felt that the more reflective approach offered by community philosophy could allow us to see beyond the blanket media coverage of Covid-19 and the UK response to the pandemic.

The exercise was undertaken with a self-selected group of nine participants who responded to a general invitation, all of whom had participated in previous community philosophy exercises. As such these results should not be considered representative of the population as a whole.

As preparation, the group was provided with an article published in The Economist in March 2020 which described the different technologies that governments from around the world were developing or, in some cases, had already employed in their attempts to contain and counter the spread of Covid-19.

A two-hour online session then explored their attitudes towards these technologies, following which the participants were asked to complete a questionnaire that asked about three specific technologies: a contact-tracing app, data-based disease and behaviour modelling, and quarantine enforcement technologies.

Overall opinion was divided among participants about whether they themselves would install and use a contact-tracing app, and whether it should be compulsory for anyone who wanted greater freedom of movement.

The principal reasons in favour of the app lie in a sense of responsibility to family, friends and the wider community. The main objections concern the worry that the government would use it as an excuse to exercise greater surveillance after the pandemic, along with a general lack of confidence in any advice that such an app would provide.

This latter point is perhaps a reflection of the widely reported difficulties encountered with the app developed by NHSX and trialled on the Isle of Wight in May 2020. Although the role such an app could play in combatting the pandemic was acknowledged, participants weighed this against the lack of transparency about how the app works and how data is managed.

The general response was more positive in the case of the use of data-based disease and behavioural modelling to monitor and predict the effects of countermeasures, a technology which has been prominent in the UK’s response to the pandemic. No participant thought such models should not be used in the UK, since it was considered that their use would help protect family and friends, and reduce the number of deaths among older people.

Interestingly, another common reason in favour of the use of modelling was the lack of trust in other people to act responsibly, something that, presumably, would be detected by the data and reflected in the outputs of the models.

Once again, mistrust of the government and its post-pandemic motivations provided a common argument against the technology, as did the lack of confidence that those developing or using the models would ensure people’s privacy by only using anonymous data.

Similar themes emerged from consideration of technologies that could be deployed to ensure compliance with quarantine regulations after possible contact with contagious persons. These technologies could include mobile phone signal tracing, wearable GPS tags, building egress monitoring and automated facial recognition. While their use has not been proposed within the UK, these technologies have been deployed, to a greater or lesser extent, for quarantine enforcement in countries such as China and South Korea (both of which, incidentally, have seen fewer excess deaths during the pandemic).

Opinion was split about whether the technology should be used in the UK, with once again, responsibility towards one’s family and friends and the wider community, as well as a lack of trust in others to behave responsibly, offered as common reasons in favour. And once again, the fear that the use of the technology would provide a precedent for increased post-pandemic surveillance by the government and a general mistrust of the technologies and those developing and controlling them were cited as arguments against quarantine enforcement technologies, as well as the suspicion that their use would prove unacceptable to UK citizens.

The workshop and its preliminaries took place in late June 2020, after several weeks of criticism of the UK government and its handling of the pandemic. This was perhaps reflected in the results of a pre-consultation questionnaire that indicated that all participants had low levels of trust in the government and a low estimation of the government’s handling of the pandemic up to that point.

Nonetheless, the findings suggest that maintaining trust – in authority, institutions and organisations, as well as in the technologies themselves – is key to the successful deployment of these technologies. A subsequent workshop will explore further the role played by trust in attitudes towards digital healthcare technologies more generally.

We would like to thank Kate Halliwell and Grace Lockrobin, who coordinated and facilitated this community philosophy exercise on behalf of Pitch-In, and to all the participants, who were very generous with their time and opinions. Read more about the Pitch-In mini-project: IoT for care – awareness-raising workshop programme. If you want to know more about the coronavirus and how to protect yourself and your family from Covid-19, please visit the NHS coronavirus website.