Letâs make sure our personal data works for us â not against us â after the pandemic
H ow is it that we live in a world that is awash with our personal information, where most of us would be shocked if we knew exactly how much we give away about ourselves each day â and yet, when a crisis came along in which that information could have made all the difference, it didnât?
If we take one lesson from Covid-19, it should be that our information needs to work harder for us â and not just in a pandemic, but all the time.
You may remember hearing, early on in this pandemic, that efforts to get contact tracing up and running were faltering. In November 2020 they were still faltering, which meant that many governments lacked a detailed picture of infected peopleâs movements and contacts. If you canât see the enemy, you canât beat it â ask any Trojan. And although containing Covid-19 is about more than just good contact tracing, a robust correlation exists between the two.
But you may also recall hearing early on that the pandemic was being exacerbated by an infodemic â an explosion of information and misinformation that was hampering containment efforts. Plenty has been written about the echo-chamber effect of social media, though Italian researchers recently reported the sobering finding that users of the left-leaning platform Reddit and the (far) right-leaning one Gab are more likely to see a diverse range of news and opinion than users of Facebook and Twitter. Not only is our information not working for us, itâs often working against us.
The two great repositories of our personal data are the state and social media. Long battles have been fought to prevent the former knowing too much about us, but few anticipated our willingness to give that information away over the internet. The Harvard professor Shoshana Zuboff coined the phrase surveillance capitalism to describe this new trend, and the manipulation that flowed from it.
In an ideal world, free speech-loving social media would provide a counterweight to secretive, centralised states. They did in China, foiling government efforts to suppress news of a disease outbreak in late 2019. But as that epidemic grew into a pandemic and pummelled the globe, it became clear that this wasnât generally what was happening. More often, state surveillance was working for the state, capitalist surveillance was working for the capitalists, and citizen users were losing out. This shouldnât come as a surprise, but maybe preventable mass death will finally prod us to do something about it.
Covid-19 has actually done us a favour, in showing that our information can work harder for us without any erosion of democracy. After the Sars outbreak of 2003, Taiwan had a public debate as to how much privacy people would be willing to relinquish in an epidemic, and with what checks and balances. The conclusions were translated into a new legal framework, and when Covid erupted, the government was able to cross-reference the national health insurance database with customs and immigration information and mobile phone data. The digital minister, Audrey Tang, didnât hide the fact that this meant a temporary loss of privacy, but her emphasis all along was on civic engagement and openness about the solutions it generated. And her âdigital democracyâ approach worked â at least until this monthâs outbreak, which suggests the state may have let down its guard. Kelsie Nabben, a researcher at the Royal Melbourne Institute of Technology in Australia, who has studied the Taiwanese case, says surveys have revealed âextremely high levelsâ of public trust in Taiwanâs official Covid response â even though trust in the government was low before the pandemic.
Contrast many other countries, including the UK, where tech companies proposed contact-tracing solutions but wrangled with governments over privacy issues. Once those had been resolved, the solutions often turned out to be hard to integrate into healthcare systems. Many people saw the proposed apps as black boxes sucking in their data for nefarious purposes. Take-up was disappointing, especially among some groups at high risk for Covid-19.
The Taiwanese solution might not have worked everywhere. Cultural, historical and other factors determine what people value and the sacrifices theyâre prepared to make for them. The point is, the Taiwanese had that debate and hit on a solution that worked for them. Now other countries need to have the same debate, which is hard to separate from the question of whether and how to regulate social media.
In their desperation to remain unregulated, tech companies have begun to give back more. Several years before the pandemic, Facebook launched its Data for Good initiative, which grants external researchers access to its anonymised user data. An Italian research group that had reported the echo-chamber effect of Facebookâs algorithms used the platformâs data to show that last springâs lockdowns hurt poor neighbourhoods more than richer ones. But Walter Quattrociocchi, an associate professor at Romeâs Sapienza University and a member of that research group, says Data for Good shows just how much more the companies could be doing.
He is among those arguing for co-regulation, whereby democratic institutions set standards that the tech giants agree to implement, and a national or even supranational âdigital agencyâ monitors that they are doing so â holding them to account for changes to their algorithms, but also facilitating collaboration in future emergencies. This agency would be staffed by lawyers, social scientists and ethicists, but above all by data scientists who understand how data and algorithms work.
Co-regulation isnât the only solution being proposed, but it is one way that the state and tech giants could hold each other in check in the interests of the citizen. Does a digital agency sound Big Brother-ish? Yes, but we already live in a surveillance society that isnât working for us. Would it introduce red tape? Almost certainly, but as the historian Yuval Noah Harari recently pointed out, when youâre talking about surveillance, a little bit of bureaucratic inefficiency may be no bad thing.
Such an agency could have a more proactive role, too. Countries with public healthcare systems, like the UK, are sitting on an untapped goldmine in the form of patient records. These are already being used to treat individuals but they could be having a productive second life, being pooled and analysed to deepen understanding of the causes of disease. Thatâs not happening yet, at least not systematically, and itâs a missed opportunity â especially since Facebook and others have shown that it is possible to protect individualsâ privacy when the questions youâre asking are about populations. The digital agency could push to make that second life a reality, on behalf of all of us.
There are many other lessons we should take from this pandemic â the need to address inequality, for instance, and to invest more in healthcare â but like the Athenians smuggled into Troy inside a big wooden horse, these problems would be far easier to solve if we could see them clearly. So letâs solve the information problem first.
Laura Spinney is a science journalist and the author of Pale Rider: The Spanish Flu of 1918 and How it Changed the World