Westminster View: The government must address the problems with care.data, not just delay

Westminster View: The government must address the problems with care.data, not just delay

Patient data needs to be genuinely anonymous and citizens should be able to opt out online

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On Monday I phoned my GP to ask to opt out of the care.data database. It was surprisingly easy, having given my date of birth they said my file would be ‘marked’ appropriately. Of course there was no guarantee others would find it quite so easy as there was no officially documented process for opting out.

That was only one of the many problems with the scheme, which is why last week’s news that it is to be delayed by six months is good. But without action to tackle these problems it is not enough.

I am 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.

When Labour Party leader Ed Miliband spoke about public services that you control, well it is data that will help put people in the driving seat.

The old model of a remote, unresponsive state can be transformed into a personalised, empowering services.

And as Shadow Minister for Digital Government it is part of my job to promote the power of digital to help achieve this.

But I recognise that many of my fellow citizens have fear of the continual collection of data. And having worked in the ICT industry for over two decades before entering parliament, I know that fear is sometimes justified. Data is knowledge, knowledge is power and power can fall prey to vested interests.

They say data is the new oil. Well if it is the new oil than people are the new oil producers. Having spent time working in oil producing countries like Nigeria, I’ve seen what unregulated market forces can do to oil producing regions. So if data is the new oil then we need to make sure that the producers retain control and ownership of it.

Why am I worried about the protection of my health data? Well 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.

But while Secretary of State for Health Jeremy Hunt has announced a paperless NHS for 2018, as his minister makes clear in a response to my parliamentary question, he hasn’t assessed the security implications:

Dr Poulter: An assessment of the security implications was not made at the time of the announcement of the challenge to the national health service to become paperless. The NHS already holds large amounts of patient information electronically, and it is vital for the effective and efficient functioning of our health care system, and to meet the needs of high quality care, that patient's information is able to flow around the health and care system. The NHS has an established information governance framework to protect personal health data, and guidance on how to meet its requirements is provided centrally.

As an internal NHS England document admits, there is a risk that data sold off could be linked to individual patients if combined with other data.

This government’s complacency over data security is why, while I support the objectives of the care.data NHS database and am very clear as to the potential benefits it can bring, I chose for the moment to opt out.

Labour is therefore demanding immediate action to ensure that:

• The government make it easier for concerned patients to opt-out of the proposals, especially online.

• Data is genuinely anonymous and people’s identities protected.

• The Secretary of State is accountable for the use of patients’ data.

We are also launching our Digital Government Review, working with industry and public service users and deliverers to identify how digital technology can improve both the efficiency and effectiveness of government. What is clear is that public trust has to be at the heart of that. And that means putting the citizen in control of their own data, in health and throughout the public sector.

Chi Onwurah is Labour shadow Cabinet Office minister and MP for Newcastle Central



  • ex gp I quote page 9 of NHS England caredata Privacy Impact Assessment Update 12214 Where patients have objected to the flow of their personal confidential data from the general practice record the HSCIC will receive clinical data without the identifiers attached ie anonymised data SO IF YOU OPT OUT THEY WILL UPLOAD YOUR DATA ANYWAY They need to do this to work out GP payments for meeting targets eg diabetic eye tests If the records are linked to your GP practice details it gives where you live So it is not anonymous data Also the identifiers that will be removed are name date of birth amp postcode not NHS number apparently Definately not anonymous aggregated data This must be illegal Where is the ICO
  • Phineas Campbell If I were more cynical Id say the only reason the government is doing this is because there is a profit in it for some private company I am more than happy for medical researchers to view my health records what worries me is the infrastructure that will be used to implement this The record management and storage will be outsourced probably to Atos as soon as that company is involved Im pulling the plug
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