Gathering and analysing data about our movements and our health is a key strategy for governments around the world attempting to manage the coronavirus pandemic. In the UK, the government has delayed until June the launch of a contact tracing app as part of its ‘test, track and trace’ approach. Ministers are relying on millions of people to download the app in order for it to be effective – but this week I published an extensive review of previous research into public attitudes to data gathering that suggests winning trust will not be straightforward.
The NHS Covid-19 contact tracing app currently being tested on the Isle of Wight uses Bluetooth technology to record an anonymous log of other app users whose physical movements come into close proximity with yours. If you become unwell with symptoms of Covid-19, you can use the app to inform the NHS, triggering an anonymous alert to other users with whom you have come into significant contact over the previous few days. The idea is that this will simplify the task of tracing everyone to whom an unwell person may have passed the virus.
Initiatives like this are important to protect those most at risk from coronavirus – but statistics tell us that they are exactly the people who are less likely to be able to access the app. National surveys by the likes of the Office for National Statistics and the Oxford Internet Institute reveal that older people and people in low socio-economic groups have less access to the internet, to internet-enabled devices, and to the knowledge and skills required to navigate them.
Those who can download the app are likely to need reassurance about its safety and security. Our review found that almost all research into the UK public’s attitudes to data gathering over the past five years has concluded that people have concerns about it. For public sector data-driven systems, these generally relate to whether it is possible for personal data to be kept secure, even if data controllers aim to do so. With data-driven systems run by private companies, people worry about whether data will be sold or shared without their knowledge or consent.
If the government can address these concerns, that still won’t necessarily translate into winning public trust in the app. People are more likely to trust some sectors than others with their data: they tend to trust healthcare institutions most, central government less, and commercial technology companies least of all. Given that the Covid-19 contact tracing app involves the NHS, the government and private sector tech companies, there is likely to be confusion over whether to trust it or not.
The relationship between trust in institutions in general and in their data practices is not straightforward. Previous research I undertook found that a complex range of factors come together to engender or undermine public confidence in data handling. These relate to whether people trust the institution that is gathering data in general, whether they trust it specifically to manage their data securely, degrees of trust in the broader data ecosystem in which institutions are operating, and even whether people trust themselves to manage their own data carefully and thoughtfully. This means that sometimes, trust in data gathering practices has little to do with the data practices themselves.
But some common themes emerge in discussions with the public about how to win their trust. People want clear communication about what happens to data, with privacy built in by design and policies to guard against harms, especially to marginalised populations. Iceland has the most downloaded contact tracing app, and its success is put down to clear rules about how data will be used, temporary data retention and a withdrawal of the app from circulation after the pandemic. The UK needs to follow this example.
Research also shows that the public want to see commitments to public consultation around data privacy, and they want the chance to opt out of data gathering. This suggests it is crucial that use of the NHS Covid-19 contact tracing app remains optional, to give people a sense of personal control over their data. Lessons can be learned from the proposed NHS care.data database, the failure of which was ascribed in part to a lack of clarity about opt out options.
Context matters when it comes to public attitudes to data gathering, previous research has found. Who is gathering data, what data is gathered, whose data is gathered, for what purpose and with what effects all influence people’s attitudes. Previous research has focused on a range of contexts, from health and education to shopping and media use, but we haven’t had a global health pandemic in our lifetimes and so we don’t know yet whether attitudes to data gathering are changing in these uncharted waters. A survey carried out last week into public attitudes to the NHSX app found concerns about data privacy, but more research is needed to find out what would make a contact tracing app trustworthy to the UK public.
It is increasingly clear from the research we reviewed that social inequalities play a major role in shaping people’s experiences, understanding and perceptions of data gathering. Disadvantaged and marginalised groups are disproportionately impacted by data-driven systems and processes, and therefore less likely to trust them. These groups are also more at risk from Covid-19 and so more in need of the protections that ‘good data practices’ could enable.
We might be able to find out more about what people think about a data-gathering, contact-tracing app by carrying out a survey or conducting a trial, as the government is currently doing. But it will take much larger-scale, systematic change to address this issue of trust. After all, distrust is often ‘morally proper’, as philosopher Annette Baier has said. To win the confidence they depend on to be effective, apps and systems built to protect us must acknowledge the inequalities that shape our experiences of data gathering and of pandemics.
Helen Kennedy is Professor of Digital Society at the University of Sheffield. Public understanding and perceptions of data practices: a review of existing research. Living With Data by Helen Kennedy, Susan Oman, Mark Taylor, Jo Bates & Robin Steedman (2020) can be accessed here: http://livingwithdata.org/current-research/publications/. Living With Data is funded by the Nuffield Foundation. Twitter: @hmtk and @Living_WithData