Covid-19 has exposed the deficiencies of national disease detection and prevention systems in many countries of Europe, and in the United States. In the UK, contact tracing was abandoned early due to lack of capacity. Just three weeks ago the government was prepared to let thousands of Scots travel through England to Wales and back for a rugby match, and it has taken a month to develop a strategy for scaled-up testing. After a decade of austerity and decentralisation, we are trying to recover the lost muscle memory of the public health response.
It will not be 100 years until the next pandemic. Population growth, human invasion of animal habitats and the resumption of fast travel between continents will take care of that. More urgently, we need a system in place after the lockdown to prevent a second wave of the Covid-19 pandemic being worse than the first.
Our lack of coherent and joined-up information systems means we still cannot answer many important clinical questions of relevance to this epidemic. What pre-existing illnesses and medications predispose people to Covid-19 infection or a bad outcome? Are some people genetically susceptible and, if so, do therapeutics and vaccine design have to take account of this? Why do some younger people need hospitalisation but most barely notice the infection? The NHS of the future could answer these questions by running a few computer programs.
After the peak of the epidemic has passed, we will need to open up the economy and resume necessary travel, while keeping a lid on Covid-19. Creative solutions are springing up to get us there faster, such as apps to track who we come into contact with so they can be warned if we become infected, and weekly testing of the entire population via a distributed network of labs. In the UK, an app for monitoring the spread of Covid-like symptoms was downloaded more than 2 million times in a matter of days. In the US, a Bluetooth-linked network of a million digital thermometers generates a health weather map that tracks the epidemic. The public health workforce needs new digital tools like these to be able to respond with speed. And as we dig out of this acute disaster, we need to build the foundations for the future response.
Imagine if we could link risk-factor information from primary care records with Covid-19 outcome data in hours rather than months, and thus answer all the questions about on risk factors for infection and death. Imagine if we could link Covid-19 data to individual genome sequences in a secure research database for five million of us, as envisaged by the UK Accelerating Detection of Disease Initiative, and thus answer the question of genetic susceptibility.
The response to the pandemic appears likely to trigger a recession, if not a full-scale depression. Investment in a national digital health infrastructure linked to biosamples would represent a tiny proportion of the economic response so far.
Thinking about 21st-century public health information infrastructure did not start with Covid-19. NHS Digital, NHSX and Health Data Research UK have been attempting to facilitate health data connections. Yet progress has been slow and information is siloed. A major gap is that for most NHS patients we do not routinely record simple risk factor data, such as family history of disease or household structure and supports. In the old world this was the stuff of interview and data entry by hand; now it can be collected and refreshed by most people on an app.
Naturally, linkage of health records demands individual informed consent. Again, consent can be efficiently sought online, and most NHS patients are surprised to learn that their data is not used for both their own benefit and the population’s good. The experience of care data in the Cameron years shows the importance of transparency of data use and access, and the restriction of the use of the data to health research in the public interest. Individual confidentiality, individual assent to use of their medical information, and the independence of the devolved nations must all be respected.
A unified and comprehensive health data system would not only provide us with the platform to improve our response to subsequent waves of Covid-19, and the epidemic after this one, it would also enable better understanding of the risk factors for the non-infectious diseases such as cancer, heart disease, stroke and diabetes that are the main work of the NHS between pandemics. Every week we clap for the carers by applauding their heroic efforts in the face of this pandemic. On the other days, let’s help them by providing the NHS with the data it needs to detect, prevent, and prepare for the next pandemic, and to help the NHS prevent and manage the non-infectious diseases that are the main causes of death and suffering between outbreaks.
David J Hunter is the Richard Doll Professor of Epidemiology and Medicine at the University of Oxford
