Citizen generated data in a pandemic

Sarah Cook

7 April 2020

The medical and scientific community have come together in an unprecedented effort to combat the COVID-19 pandemic, using cutting-edge science and technology to help tackle the disease:  with advanced data modelling experts are peering into the future to predict the impacts that different disease management approaches will have on society;  genome sequencing is being harnessed to understand the transmission and evolution of the disease to hasten the discovery of treatments and vaccines; and digital transformation that would typically take years - for example remote GP consultations - has been put in place within a matter of weeks.

Another area of activity is the use of citizen generated data – data created outside the health system by citizens interacting with digital devices to understand more about the disease, its spread and symptoms. Data generated by citizens via their smart phones, both with their knowledge or without is hoped to be a useful part of the toolkit we are building to control spread of the virus.

Wherever I go, you go

There are two ways that data relevant to disease management can be collected via mobile phones: actively, by user input,  for example apps where users enter information on symptoms, or passively by inbuilt sensors, such as  the Global Positioning System (GPS) location tracking.

The ubiquity of smart phone technology worldwide means that both types of data are of interest to governments and authorities around the world. Information about citizens’ travel, social contact, places they visit and the symptoms they are experiencing could prove useful when trying to control the spread of an infectious disease - but also poses ethical dilemmas even when citizens know  - and accept - they are being tracked.

An example of how  mobile location data can be used during a pandemic was demonstrated earlier this month when US location data visualisation group, Techonix GEO, shared a powerful video showing the tracking of 5000 devices following a gathering for the US spring break holiday. The video shows clearly that social distancing advice was being flouted. It  also shows how far the devices travelled after the gathering, providing a dramatic picture of the potential spread of the pandemic.

Invasion of the location data snatchers

Countries that are harnessing citizen generated data have done so with varying degrees of impact on their citizens’ privacy One of the most controversial uses  of mobile phone location data is in Israel where it is being used without citizens explicit consent to enforce quarantine and assess individuals’ likelihood of infection based on where they have been and who else might have been there. In contrast, Australia are adhering to their citizens’ values by refraining from using citizen data at all.

Here in the UK, there have been discussions about capturing location data from smartphones to assess how well social distancing measures are being followed. The  Information Commissioner’s Office has advised that the use of mobile data is acceptable as long as the data is anonymised and aggregated. However, privacy campaigners point out  there is limited evidence that data tracking can help during infectious disease outbreaks. They also warn that this could be a stepping stone to longterm mass surveillance and data exploitation. 

The granularity of the data used in tracking – i.e. is it looking at specific individuals or general populations – is an important consideration and one where privacy and civil rights are balanced against the potential usefulness of the data. There is also the question of how well the data can be anonymised. Even if identifiable data (e.g. users’ names) are not linked to location traces, where an individual goes is clearly linked to where they live. 

Whilst a lot of activity in this area is happening at a national level, the mobile phone industry has been exploring the use of mobile data to track the spread of the virus across the globe.  

There’s an app for that

Various apps are being launched in the UK,  most notably the COVID-19 symptom tracker -  downloaded over one million times in the first few days following its launch. A collaboration between the University of Oxford and NHSX  is developing another all-in-one app that will enable symptom tracking, use location data for contact tracing and potentially order a postal test for people with suspected COVID-19.

Although using these apps is voluntary there are concerns that private companies – e.g. restaurants, shops or transport services – could move to requiring workers – or customers -  to use them before allowing them to access services.

This may already be happening in China where  an app uses a traffic light colour code to show whether an individual is unlikely to have come into contact with the virus and is low risk, or more likely and should be in quarantine, or that they are a confirmed case. Use of the app was promoted as optional, but there are reports that public services and spaces have denied entry to people who are not using it.

The digital divide

Turning to smart phones for data collection is an increasingly common approach, but how representative is such data and what happens to those who are not represented? Among those least likely to own a smartphone, be on monthly contracts and/or have access to reliable internet connection are precisely the people who are at higher risk of contracting  and being most severely affected by the disease such as the elderly and people with underlying health issues. In the COVID-19 outbreak the higher risk category extends to those who can’t self-isolate such as key workers or the homeless.

What happens when life ‘as normal’ resumes?

When time is precious and lives are being lost, the balance between acting quickly and protecting societal values may shift. Radical action may be necessary during a worldwide crisis  but still requires careful consideration about the longer term impacts on society.

Whilst, at the moment, it seems unlikely the UK will compel it’s citizens to  share location data or use of such apps, openness  about where data is being collected and how it is being used, is vital as is clear communication around intentions once this crisis has passed. Citizens may be willing to sacrifice some privacy for the duration of the emergency but may expect to return to life as it was, once the crisis has passed. How individual governments around the world have responded to the pandemic is ultimately a testament to the relationship between the state and their citizens.

 

More from us

Genomics and policy news