Big data in life sciences and the NHS: panacea or privacy headache?

In Digital, Health by Andy PeelLeave a Comment

Technology is advancing at an unprecedented rate. In health, it has the power to radically improve patient outcomes through really innovative means, such as improving patient flow in hospitals or reducing hospital infection rates through the electronic monitoring of hand hygiene. It also has the potential to contribute significantly to the British economy, something the Government is hoping to encourage through its big ticket ‘Life Sciences: Industrial Strategy’.

One of the five central pillars to this strategy is maximising the utility of data, as without access to patient data or medical records, new scientific breakthroughs and drug discoveries are constrained and many of today’s health tech products simply would cease to exist.

Historically, access to patient data has always been important. In the 1940s it helped scientists establish the causal relationship between smoking and lung cancer and more recently, it allowed the discovery of how the HIV virus is transmitted, both momentous discoveries in their own right.

But this is 2017. Humans are now creating 2.5 quintillion bytes (1018) of data every day. In fact, 90% of the data available in the world today has been created in the last two years. This is big data. Metadata. By opening up access to this kind of whole population data, ‘curing cancer’ suddenly becomes a very real possibility and a new dawn of healthcare could well be upon us.

But, key to this vision becoming a reality is the need to ensure that relevant patient data is accessible, held securely and obtained with the express permission to whom it belongs. In turn, this comes with a minefield of problems.

Just last week it was revealed that an NHS app used by 500,000 patients was suspended after fears it did not meet NHS Digital’s clinical information standards for IT systems. Stories about improper practice at tech companies have dominated headlines over the last few years, such stories have fuelled the ongoing debate about how to protect patients whilst simultaneously facilitating scientific breakthrough.

Companies have a genuine challenge not only to convince patients to share their data, but in communicating how they then use that data. With public trust in large companies wavering, businesses must be positioning themselves positively and transparently in how they use data.

People are much happier for their data to be shared when they know what it will be used for and how exactly it will improve patient outcomes. Similarly, they may be more willing to share their data if they can see the improved outcomes benefiting their local communities, and so looking at data sharing at a local population level is important. This is the very thing the Industrial Strategy will achieve in establishing 2-5 regional data hubs across regions of 3-5 million people.

But that isn’t the only challenge facing technology and pharmaceutical companies. There are also a number of legislative hurdles on the horizon. The first is the General Data Protection Regulation (GDPR), a piece of EU legislation that will bring data protection laws into line with the new, previously unforeseen ways that data is now being used.

Despite taking four years to pass through the European Parliament, awareness of GDPR obligations upon businesses is worryingly low. One-third of UK directors have not heard of the GDPR and with just 7 months until it enters the UK’s statue books, just 40% of UK directors are unsure as to whether their companies are even affected by it. Plenty of policy analysis still to be done then.

Closer to home, the Data Protection Bill that was announced in the Queen’s Speech in June is currently going through the House of Lords. Replacing the Data Protection Act 1998, GDPR will be incorporated into the Bill, ‘to prepare Britain for Brexit’.

There are sure to be twists and turns in the road ahead as industry wrestles with new and proposed legislation and the debate about data sharing rages on. Undoubtedly, concern over medical data is important and to ease the publics’ concern, health technology and pharmaceutical companies must be transparent in how they use data and find compelling ways to communicate the advantages to patients.

But ultimately, the end destination is an economy where businesses have a stake in the future of the life sciences sector, a healthcare system that saves billions of pounds by adopting new and innovative technologies, and a research sector where barriers to scientific breakthrough are removed to enable discovery of new drugs and therapies that can change patients’ lives.

For information on how GK can help you navigate the regulatory landscape of healthtech, get in touch with

Prepared for GDPR implementation? See how our sister digital agency, onefourzero, can help.

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