Health data is something that must be utilised, not demonised
In a world driven by data, we must ensure that the we can reap the benefits of analysing anonymised health information – while still protecting privacy, writes Dean Russell MP
Over the last century, our understanding of personal and public health has grown more quickly than at any other point in human history. Scientific developments have enabled some of medicine’s brightest brains to study cross-population health data that in turn saw the development of life-changing health provision. However, it could be said we are approaching a crossroads. As technology advances at an increasing pace, there is an increasing ethical dilemma of what data we can – and should – collect from our citizens in the name of progress, and how to use it.
Typically, arguments are made around how knowledge of a particular individual’s health (or lack of) could be used against them, whether it be international intelligence agencies, blackmailing hackers, or insurance companies wanting to raise premiums. This backdrop naturally means any conversation around health and data begins with an extreme air of caution.
While the morality maze is a complex one, the opportunity to analyse and learn from anonymised data on a mass scale and develop new ways to tackle deadly diseases and life-threatening illnesses is too large to ignore. Imagine a world where illness and disease are not just studied in isolation but where wider complex lifestyle choices are part of clinical trials – not based on just a few hundred patients, but on millions.
The problem is many people would feel nervous about allowing their health data to be collected and shared, because of the fears outlined above. Ironically, they are probably already giving away far more than they realise for far less noble causes than curing cancer or dementia.
“We should not allow the demonization or scaremongering of data in the health arena”
So many people wake up and check their phone before breakfast and track how many steps they have walked each evening before bed on their smart watch. Technology has become habitual for so many, without realising they are being watched as much as they are watching their screens.
With Amazon, Facebook and Google, people seem generally apathetic to the fact their data is gathered because they know the platform will benefit them through friend or product recommendations. The line between creepiness and convenience often blurred based on the instantaneous benefit that is perceived.
The fears of what could go wrong around privacy and data must be mitigated – and legislated for in some instances – but we should not allow the demonization or scaremongering of data in the health arena.
We, quite rightly, have campaigns for organ donation and giving blood to urge the public to help save the life of a stranger. These acts are selfless and have a clear and direct purpose. In the world of data there is an opportunity to do this on a much bigger scale – the donation of health data provides such an immense opportunity to save not just one life but thousands or even millions.
Treading the line on how to best utilise a technological revolution – from the diagnostic equipment used right through to optimising data analysis to pre-empt those prone to certain illnesses – is imperative if we are going to maintain a healthy society for the growing billions on the planet. Politicians on all sides must help put the safeguards in place for privacy and safety but also find a way to ensure patients are comfortable sharing their (anonymous) information. The UK is among the international powerhouses on cyber security. By growing the relationship between the NHS and cyber worlds, prolific work can be done to protect personal health data whilst ensuring that data is available to be used productively.
We must act as a nation to be at the forefront of this arena. If we can get the safeguards right, the health data revolution could benefit the entire world for decades to come.
Dean Russell is Conservative MP for Watford