In the media

It’s time to challenge assumptions about sharing personal data

The Journal of mHealth

23 April 2020


This article first appeared in The Journal of mHealth

As the COVID-19 lockdown in the UK moves into its fourth week, the public and media are starting to ask about the plans for the exit strategy. Importantly, this doesn’t simply mean when will the lockdown be lifted, but rather, what is the comprehensive strategy for avoiding unnecessary deaths and for economic recovery while we wait for a vaccine. How can data help and where to look for inspiration?

Using data to lift the ‘invisibility cloak’ of the disease

South Korea is being hailed on the global stage for harnessing the power of technology and data to fight the virus with precision. Despite being hard hit by the virus in February, South Korea was able to start halving the number of new cases quickly. With only just over 200 deaths, the World Health Organisation is pointing to South Korea as evidence that containing the virus can be done. One of the key planks of their strategy is wide community testing and forensic contact tracing. In the week beginning 2 March, South Korea was testing on average over 11,000 people per day.

Forensic contact tracing in South Korea draws on GPS data from mobile phones, credit card records, and CCTV footage to precisely trace an infected person’s movements while they were unknowingly contagious in the days before they tested positive. This data is then anonymised and shared via mobile phone alerts to people who have been in the same places as the infected person and instructs them to get tested.

South Korea also encouraged its citizens to download a symptoms tracker app to their smartphones allowing the Government to have access to valuable data. This was complemented by testing data about the prevalence and impact of the disease. Knowing that people arriving from overseas with the disease was a key risk, they required all overseas arrivals to download the app. People who are in self-isolation must download a different app which alerts officials if they leave their home. Fines apply to such breaches. Airports, offices and other large buildings are using thermal cameras to identify people with a fever.

How we can use data and technology in the UK

The evidence is clear, using data and technology can lead to incredible success. To achieve this in the UK, we need to focus on capability, capacity and culture.

Unlocking our capabilities

In terms of capability, much of the technology being used in South Korea is simple and easily translated to the UK, such as smartphone apps. But some requires infrastructure and capabilities not widely available for public health use in the UK, such as thermal cameras and at scale forensic contact tracing. This is not insurmountable. Indeed, the British Army has thermal camera technology and police forces across the UK have deep capability in tracing people’s movements using the exact same data inputs as South Korea.

Preparing to contact trace

From a capacity point of view, the total number of cases in South Korea is just over 10,000, compared to the UK with over 60,000 cases. Therefore, at this point, it would be a struggle for any nation to have capacity to contact trace. But when the numbers of new cases start to reduce (as predicted by the models) it should be possible to start contract tracing again.

The public is here to help

The culture point is the big one. It has been suggested that the UK doesn’t have the same appetite for sharing personal data. Government needs to enlist the support of the public in driving a new approach to tackling the virus. We have seen over 750,000 people sign up to volunteer, emotional outpourings for the NHS, and incredible community spirit. The public is here to help. Government can capitalise on this willingness to support one another in the implementation of technology that pushes us into a new level of personal data sharing.

Imaginative use of technology as deployed by South Korea is not about handing over personal privacy to some all-powerful state. It’s an exchange of trust. Citizens share their data in exchange for being able to access a wealth of information that helps them, and their families, stay safe and save lives. Better use of technology and empowering the public with data will help to build confidence; confidence to resume normal activities and fully participate in the economy. It is also necessary to implement existing aspects of the Government’s policy such as practical implementation of the antibodies test.

In many other facets of our life, we are already sharing data to create personalised experiences, such as through social media, entertainment (Netflix), and retail. Sharing our health data health empowers us to access more personalised care as well as being able to improve outcomes across population groups. It creates an environment where patients can have greater access to precision medicines, alternative therapies, and real-time clinical intervention in the comfort of your own home.

Sharing data save lives. We know this now more than ever before. Let’s use this unique opportunity to increase trust in society and to enable our healthcare system to provide technology-enabled, data driven, personalised care.

Erin Birch is a healthcare expert at PA Consulting

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