On top of frontline workers, data has also been regarded as a less visible line of defence against the ongoing COVID-19 pandemic, especially when it comes to answering tricky questions like “what is the best way to identify patients who are potentially at risk of coronavirus infection and result in adverse complications?”. In spite so, the process of getting engaged with data, as Jem Rashbass, Director of Master Registries and Data at UK’s NHS (National Health Service) Digital wrote in Digital Health this June, “was far from being a straightforward task”.
Using data is not a straightforward task
That’s because most healthcare data are not neatly arranged and stored in one easily accessible place. What Rashbass and team found useful was to get their hands on a large amount of population level, non-overly aggregated clinical data. For example, primary care prescriptions which encompass details on prescriptions and conditions that these prescribed drugs are treating. This will render instant insights into the actual diagnoses of many.
However, individual medication tends to be prescribed for different medical conditions, like Beta Blocker may have been prescribed to treat hypertension, anxiety, or heart disease. As such, more questions, such as “how do we identify patients with this or that medical condition?” and “what other data is actually available in primary care” emerged in the process. In the end, answering one simple question related to COVID-19 becomes a complex and challenging piece of investigative work.
On the positive note, as Rashbass mentioned, the pandemic is pushing for change in a rapid way. Knowing that data will provide an opportunity to look at things differently, NHS Digital is channeling some of its resources to assist in the combat against the global health crisis. Secondary Uses Service (SUS+), a data store in England supporting healthcare planning, administration, and related and developments are now being used by scientists at the University of Oxford to evaluate the effectiveness of potential COVID-19 treatments.
Similarly, data from Hospital Episode Statistics (HES) are also used to understand the effectiveness of potential treatments in patients with other medical conditions. Researchers at the University of Cambridge are also trialing a machine learning system that will predict upcoming demand on intensive care unit (ICU) beds and ventilators. The institution has already successfully created a COVID-19 Capacity Planning and Analysis System (CPAS) to support hospitals in their resource allocation effort.
The security and privacy hurdles
Above all, NHS Digital, British Medical Association (BMA) and the Royal College of General Practitioners (RCGP) are partnering to centralize the collection and dissemination of data for essential planning and services during the pandemic. They hope this will relieve some of the administrative burdens shouldered by GPs (General Practitioners) at the moment. Yet, these successes were not witnessed across the entire NHS. The public health service failed to develop its in-house contact-tracing application. Leading to the termination was the plan to store collected data in a centralized database which worried many privacy researchers. The government also announced the collected data will be stored pseudonymously, which means patients may risk being re-identified shall the data is combined with other information.
More importantly, some academia questioned if NHS partnership with Palantir, a company involved in the Cambridge Analytica scandal previously, to develop new virtual tools that help in the COVID-19 battle was politically motivated. They are concerned whether data will be stored and combined in ways that are not intended originally in the contract; since the government only published one DPIA (Data Protection Impact Assessment) on the effort thus far. Academia is also not comfortable with the opaque nature of this collaboration.
The collaboration was also covered in the latest issue of AIM magazine. Eleonora Harwich, Director of Research and Head of Digital and Tech Innovation of Reform, a leading UK think-tank for public service reform told AIMed that COVID-19 is an unprecedented situation in which the NHS has to make snap decisions. Sometimes, emergency does create a kind of short-sightedness which prevents individuals from fully understanding the impact of current decisions on the future. Ultimately, the pandemic has presents itself in a dichotomous way: it’s either we trust these companies to develop something in the interests of the public or we leave things are they are.
Indeed, at the end of the day, even if we know data plays a crucial role in this war against coronavirus, but without the proper infrastructure and know-how back by ethics and trust, it will be like going to a battlefield unarmed, there’s no way we can fight back.