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Science

Big data in healthcare: how comfortable are you in your role as 'research patient'?

The UK's National Health Service is turning to IT in a big way, with plans to be completely paperless by 2018. More significantly, it wants to make much of that massive data supply transparent.

The UK's National Health Service has been set a goal: increase efficiency and improve patient care by going paperless by 2018.

But before that, the NHS is due to make public huge volumes of digital data derived from the patients for whom it has provided care.

In fact, that's happening right now.

Back in December of 2011, Prime Minister David Cameron labeled every NHS patient a "research patient" because, he said, the service was opening up vast amounts of so-called big data to those who could use it to improve healthcare in the UK and worldwide.

NHS ambulence (Photo: Kyle McKinnon)

The UK's National Health Service is driving towards a paperless future

"This is the real world evidence that scientists have been crying out for," said Cameron.

But while the move has been widely praised, it also has its critics.

On the front lines

General practitioner Dr Hadrian Moss is both cheerleader for the use of big data, and critic of the way in which the UK government has decided to seek permission from patients and "anonymize" data. It doesn't really seek permission. It assumes permission unless a patient says otherwise.

Dr Moss likes the idea of gathering all the digital information the NHS has at its disposal - and sharing it internally with other doctors, clinicians and hospitals, as well as externally with researchers, pharmaceutical interests and health-related businesses. Moss is one of six doctors at a NHS practice serving about 12,500 people.

"Really, as soon as the patient walks in the door, I'll have already looked at their medical record, previous consultations, results and any investigations," says Moss. "Everything is instantly available on the computer screen."

Hadrian Moss, GP, England

Moss: As soon as a patient walks in, we start collecting data

But networking between hospital IT systems in the NHS and those of external doctors - or even from one hospital to another - can be seriously lacking - sometimes with fatal consequences.

Jeremy Hunt, the government's health secretary in charge of the NHS, has admited that 11 hospital patients died last year because they were given the wrong medication. He says digitizing the system - going paperless - won't solve all of the woes related to information flow, but it will help.

What will help even more, says Tim Kelsey, NHS England's first-ever director for patients and information, is to open up all that data to the outside world.

"Open data is the most important thing we're going to be doing in our generation in terms of improving healthcare," says Kelsey. "I fundamentally believe transparency is going to transform both quality and the experience that patients have of their care and the cost of the NHS."

Chris Yiu, outgoing head of the Digital Government Unit at the think tank, Policy Exchange

Yiu: the NHS holds a wealth of data

Big data has already offered dividends to the NHS, according to a report by Chris Yiu, the outgoing head of digital government at the British think tank, Policy Exchange.

"The NHS is unique in the world in terms of the breadth of population that it covers and how long it's been up and running," Yiu says. "It is one of the richest continuous linked sets of data on citizens anywhere in the world. Looking into that data with modern computing power to understand some of the patterns that are in there, could be hugely beneficial in terms of medical science."

Yiu, and one of his Twitter followers, the NHS's Tim Kelsey, as well as the British prime minster, David Cameron, all say it's a matter of urgency to make big data on patients and their medical history transparent - while keeping the patients anonymous.

But is big data happening like that?

Privacy and permission

"The notion that these records are anonymous because they don't have a name and address is simply false," warns Martyn Thomas of the Institution of Engineering and Technology's information technology policy panel.

A nurse tends to a patient in Birmingham's Queen Elizabeth Hospital (Photo: Christopher Furlong/Getty Images)

UK patients have died because they were given the wrong drugs - will big data stop this happening?

Last month, Thomas wrote an opinion piece for the "Health Service Journal," describing big data as "unthinking, ignorant and callous."

"The data that is being extracted from doctors records…won't include the patient's name and address, but it will include their postcode, their age, their date of birth, their gender, their ethnicity," says Thomas. "In many cases that alone is enough to re-identify the individual."

Perhaps more difficult for Thomas and other privacy advocates to swallow was the change made to the NHS constitution.

The default setting now gives permission to use a patient's data - unless they specifically chose to opt out. No opt out means you and your medical data are in.

Dr Hadrian Moss, the GP from Northamptonshire, says that's wrong.

As is, he says, a £2 million leaflet drop across the UK, explaining that NHS patients have to proactively opt out of big data if they're uncomfortable with the new NHS rules.

Martyn Thomas, Institution of Engineering and Technology’s information technology policy panel

Thomas thinks big data in healthcare is "unthinking, ignorant and callous"

"Most people don't read their junk mail, they throw it away," says Moss, "and the government is going to interpret that as implied consent to the sharing of data, whereas in fact in a household of six people, there may be only one person who's read the letter. But because of this implied consent, [all] their data will be shared."

Both Moss and Thomas admit there are positives to be gained from the sharing of big data - such as the ability to study the health records of a complete population, or the potential for studying the efficacy and efficiency of medication.

But they're also very clear about its potential harm to people, whose conditions, they say, should be kept private for reasons of possible discrimination, private insurance costs, even personal safety in the case of an abusive family member.

A balance needs to be found for the sake of such people, says Martyn Thomas, who warns "data is forever."

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