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It’s time for a public debate about data sharing

It can have huge benefits, for example in the NHS—but only if it’s done right

By Chi Onwurah  

NHS workers in Beckenham, south east London. Data sharing in the NHS can enable earlier diagnosis, earlier interventions, better treatments and more independent living ©Peter Macdiarmid/PA Archive/Press Association Images

It’s a data world out there. Karen Bradley, the new Secretary of State for Culture, Media and Sport, opened this week’s debate in Parliament on the Digital Economy Bill with the not-very-original observation that we were living in a digital economy. I agreed with her but pointed out that it is driven by data. Data makes so many new digital products and applications work—whether that is through location services or working out how many steps you walked today.

And the same is increasingly true in the public sector. The public sector delivers the services most precious to people—housing, safety, healthcare…

And people, generally, have no choice about the public services they use. When you get ill you go to the doctor. Even those who use private health insurance go to their GP for a referral and are sent to an NHS hospital when their condition is too difficult for the private sector. But of course the vast majority of people in this country use, and love, the NHS.

Which is why protecting people’s data, and giving them agency over it, is so important.

As Shadow Minister for Digital Government under the last Government and now as Shadow Minister for the Digital Economy, I want to see digital tools and data used to bring about a fairer, flatter society. As a Chartered Electrical Engineer I have professional experience of the progressive power of technology.

I consider myself a champion of the power of shared data. I believe the better use of data could not only reduce the costs of public services, saving money to be better used elsewhere, it could improve those services, make them more individual, more personal, faster, more efficient.

The old model of a remote, unresponsive state can be transformed into personalised, empowering services. Data can help put people in the driving seat.

In the NHS, data sharing could help millions—enabling earlier diagnosis, earlier interventions, better treatments and more independent living. But people must feel they are in control.  That’s what went wrong with the bungled care.data programme, people did not believe they were in control. And they were right. A review into the programme found people were not sure their data would not fall into the wrong hands, and were afraid sensitive information could be given out to the wrong addresses, misplaced or lost.

My health is really important to me, naturally. But it’s also important to others—prospective insurers, health companies, employers, pension companies, pharmacies. It is valuable information. Google uses the rate of search for “flu medicine” for example to predict the spread of the virus. Being targeted with cough medicine ads because you went to the doctors last week would be annoying. Having your mortgage application refused because the combination of your medical records and your Facebook posts raised flags in some automatic software algorithm would be traumatic. And then there is the fact that databases are a juicy target for cyber criminals, which is why security should be a priority.

And in principle it is. The Caldicott principles updated following the care.data debacle set out the ways in which the NHS must manage our data. It must not share data unless it’s totally necessary, use the minimum amount possible and must only share it with those who need to know. Those with access to this information must be aware of their responsibilities and comply with the law at all times.

The problem is they are too vague, open to interpretation and the vast majority of people have never heard of them. Now we have the Digital Economy Bill going through Parliament enabling data sharing in a range of government departments, without consent and with only the vaguest “for the benefit of people” principle. And again, most people have never heard of it, though I will do my best to change that over the next few months.

This comes when last week’s National Audit Office report “Protecting Information across Government” on cyber security in the public sector highlights that, for example, there were approximately 9000 data breaches recorded in 2014-15, of which were reported to the people whose data was breached.

We need a public debate on data sharing and a legislative framework for how it will be shared across government with some basic principles laid out—ones which most people can follow most of the time. Otherwise we will see a series of failures in trust. This will put data sharing firmly in the state snooping corner, and it will not be the progressive, enabling platform we want.

With the support of BCS, The Chartered Institute for IT, Prospect hosted a series of panel discussions at the 2016 Party Conference on health data. These discussions were chaired by Jon Bernstein, Associate Editor of Prospect. Speakers included: Chi Onwurah, Shadow Minister for Business, Energy and Industrial Strategy and MP for Newcastle upon Tyne central; Diane Abbott, Shadow Secretary of State for Health and MP for Hackney North and Stoke Newington; Jo Churchill, Chair of the APPG on Personalised Medicine and MP for Bury St Edmunds; Andy Kinnear, Chair of BCS Health; Jeni Tennison, CEO, Open Data Institute (ODI); and Dr Mohammad Al-Ubaydli, Founder & CEO, Patients Know Best.

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