How public data is giving researchers a better understanding of COVID-19

With scientists racing to find treatments for coronavirus, could contributions from ordinary citizens help overcome the crisis?

There is still a lot we don’t know about COVID-19, after almost 2 million confirmed cases worldwide and 127,000 deaths.

Uncertainties remain around how the novel coronavirus mutates, how COVID-19 presents in symptoms, and whether any existing medicines could help alleviate the disease.

In the absence of standardized global testing for the virus, citizen-led apps are giving researchers valuable information.

The power of self-reporting

In the UK and the US, an app called COVID Symptom Tracker has encouraged millions of people to self-report on their well-being daily, enabling researchers to monitor high-risk areas, as well as how fast the virus is spreading in a particular area, and who is most at risk of developing severe illness.

The app allows scientists to document the most commonly reported symptoms, and create heat maps of where cases are concentrated.

As Tim Spector, Professor of Genetic Epidemiology at King’s College London and Research Lead for the COVID Symptom Tracker told The Conversation: “Politicians and healthcare leaders are in the unenviable position of having to make impossible decisions about how best to tackle this fast-moving situation. Yet they are missing the one thing that would help them the most: data. Waiting for data on people going to intensive care units, and sometimes sadly dying, is like being in a war waiting for bombs to fall without radar”.

Data from COVID Symptom Tracker is being shared daily with healthcare leads, researchers and policy-makers to help them make decisions about the allocation of resources and judge how well measures such as social distancing are working.

Global reach

In Australia and New Zealand, influenza-monitoring platforms such as FluTracking have widened their scope to follow coronavirus outbreaks in those two countries. Patients Like Me, a US-based data platform with global reach, is chronicling the treatments that patients are trying for a range of coronavirus symptoms, to help people manage their illness.

Such apps are not the only way that artificial intelligence (AI) is helping address the crisis. In the UK, the National Health Service is working with major technology firms including Microsoft, Amazon and Palantir, as well as with London-based AI specialists Faculty, on a project that will use publicly-sourced data to map outbreaks of COVID-19 in real time. This data will help determine where medical staff, equipment and beds are most needed. The UK government has promised to anonymize all the data, to protect patient privacy.

In a time of anxiety and speculation, it's scientific rigour that will ultimately guide both governmental response to the coronavirus crisis, and the development of vaccines and treatments. But personal information shared by members of the public has a critical role to play in unlocking the mysteries of this devastating virus.