Digital technologies and data privacy in the COVID-19 pandemic

A Nature Medicine review, led by researchers in the EPSRC funded i-sense project, looks at how digital technologies have been mobilised for a global public health response to COVID-19 and the associated concerns with privacy and efficacy in an evolving digital world.

Lead author and Director of i-sense EPSRC IRC at UCL, Prof Rachel McKendry said: “Our review shows that digital technologies have an important role in a comprehensive response to the pandemic, alongside conventional measures.”

“The future of public health is likely to be increasingly digital and global approaches to the regulation, evaluation and use of digital technologies for outbreak preparedness and management are urgently needed.”

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A collaborative global approach to pandemic preparedness

The review suggests that a collaborative, system-level approach is required to build and evaluate an effective digital online pathway that links testing, contact tracing, and clinical follow up.

First author and i-sense researcher at UCL, Jobie Budd, suggested: “Technologies should be developed collaboratively with governments and healthcare providers, ensuring they meet public health needs and ethical standards.”

An example of where this integration has been done is from researchers at University College London who have been working with Public Health England to develop a suitable AI algorithm that monitors aggregated search queries related to COVID-19 from Google to gain a better understanding of the true rate of infection within the community.

i-sense Deputy Director, and Professor and Director of Research in the Department of Computer Science at UCL, Prof Ingemar Cox, added: “Online surveillance to support traditional surveillance methods has provided important insights into community transmission during this pandemic as testing has been limited and many cases of COVID-19 are mild or asymptomatic, meaning they may never report to hospitals or clinics.”

“The pandemic has also highlighted the need for standardised data collection and for privacy related legislation and regulation to be develop alongside this fast growing digital industry.”

Data sharing and privacy during a pandemic

During this pandemic, many technologies have been adapted and developed on a scale never seen before, including new apps and data dashboards using anonymised and aggregated data to help inform public health interventions.

There will likely be benefits once complete evaluation has been done, however, concerns over civil liberties and privacy when using individual and population level data have been raised throughout the pandemic.

Chief Scientific Advisor, Department for International Trade, Dr Mike Short CBE, said: “Although times of emergency may call for different data access requirements, any data used for the pandemic response should not be misused beyond this purpose.”

The use of data to inform outbreak response should also take into account the digital divide. Although, as stated in the review, 67% of the global population subscribe to a mobile device, 51% of the world’s population are not mobile internet subscribers. As many of these interventions and surveillance methods rely on connectivity, many communities may be left behind or missed from statistics.

Interventions should take into consideration these populations, as they may be those hardest hit during a global health crisis, and develop messaging that is accessible to those without access to mobile phones and/or the internet.

Empowering the public through education and communication

Underpinning an effective public health response to any outbreak is communication and education of the public. The rise of digital technologies has led to faster and more widespread communication, including through social media platforms, TV briefings and text message updates. To mitigate misinformation, technology companies such as Google have been prioritising messaging from trusted sources included the WHO in their search responses.

Digital platforms have also made adherence to restrictions somewhat easier, allowing people to access work and school from home, support community members in need, and access facilities, including healthcare services, through video conferencing.

Prof of Infectious Disease Epidemiology at the London School of Hygiene & Tropical Medicine, Prof David Heymann, said: “We need to ensure new digital technologies go through rigorous evaluation to identify those technologies that prove to be effective so that they can add to our armamentarium for outbreak control, adhere to privacy and ethics frameworks, and are built into online pathways developed in collaboration with end-users.”

Acknowledgements

This review was conducted in collaboration with experts across University College London, Chatham House, University of Surrey, Imperial College London, Newcastle University, Department for International Trade, University of Leeds, University of Copenhagen, and London School of Hygiene and Tropical Medicine.

Authors

Jobie Budd, Benjamin Miller, Erin Manning, Vasileios Lampos, Mengdie Zhuang, Michael Edelstein, Geraint Rees, Vince Emery, Molly M. Stevens, Neil Keegan, Michael J. Short, Deenan Pillay, Ed Manley, Ingemar J. Cox, David Heymann, Anne M. Johnson and Rachel A. McKendry