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UK.gov to require YOU to opt out of data-sharing plan with drug firms

Confidential NHS records to be 'opened up'

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Plans to share confidential NHS records with private medical researchers have been revealed by Prime Minister David Cameron.

The government said in a statement yesterday that it was announcing a consultation "to change the NHS Constitution so that patient data is automatically included in clinical research, but giving patients a clear opportunity to opt out if they wish to do so".

On such data the NHS constitution currently states that healthcare workers "have a duty to protect the confidentiality of personal information that [they] hold unless to do so would put anyone at risk of significant harm".

If the Coalition's plan is implemented, it would mean that national healthcare patients would be required to proactively take themselves off the list, to prevent their personal medical data being shared with researchers.

Many privacy campaigners have argued that it's a bold and dangerous move by the government, which is busily pushing its Open Data agenda throughout Whitehall in an effort to offload information-sharing onto the private sector.

Concerns will also be raised about the NHS's appalling track record on keeping data safe.

In July this year the Information Commissioner's Office said it was working with Connecting for Health to try to get the NHS to take data security more seriously.

That news came as another five NHS bodies signed undertakings with the watchdog to improve processes.

“We can be proud of our past - but we cannot be complacent about our future. The industry is changing; not just year by year, but month by month. We must ensure that the UK stays ahead, yes, we’ve got a leading science base, we’ve got four of the world’s top 10 universities, and, we have a National Health Service unlike any other," said Cameron.

"But these strengths alone are not enough to keep pace with what’s happening - we’ve got to change radically - the way we innovate, the way we collaborate, the way we open up the NHS."

He also used tech biz jargon to emphasise his desire to "take an even bigger share" of the life sciences market, which in the UK is the third largest contributor to economic growth with more than 4,000 companies and a total annual turnover of £50bn.

"I want the great discoveries of the next decade happening in British labs, the new technologies born in British start-ups,” the PM said.

Apparently, outsourcing medical research is the way forward for the NHS, but to do that, data needs to be shared.

"The Department of Health will simplify the process for researchers accessing vital data," the government said in a foot note accompanying its statement.

"The Department’s Research Capability Programme, a programme started in 2008, looks at how data captured by the NHS in routine care could safely support research.

"At present getting patients consent for vital research is done on a study by study basis causing significant delays. The Government's announcement today will further improve the evidence used in research for the wider benefits of patients through the rate at which patients can be recruited for clinical trials."

A so-called Clinical Practice Research Datalink is being launched to create a "nationwide health data and information platform that will enable health research to achieve maximum potential and the ambition to make the UK the preferred place to carry out medical research."

The government claimed that opting NHS patients into its data-sharing plans would help remove delays within the system.

Nick Pickles at civil liberties group Big Brother Watch said he was concerned about the government's plans.

[A]t time when patient choice is a central aspect of health reforms, it is strange how this sharing is currently planned to be done without first giving patients the choice of including their own information in the scheme.

We do not doubt that the objectives of this policy are laudable. However it is simply not the case that personal information is adequately protected under the current system. The Deputy Prime Minister [Nick Clegg] recognised this before the election when he said: 'government simply cannot be trusted with our precious private information.'

The data protection regime in Britain requires urgent strengthening before anything resembling this kind of policy should be considered. Until then, Government should explain why it wants to share our data and the evidential basis for doing so.

In the same statement, the government said it that around 3 million homes would get remote medical kit providing vital statistics of at-risk patients directly to doctors. A £180m fund has also been allocated to support medical breakthroughs and help get them from the lab to the commercialised drugs market.

Details of a clinical trials database will be provided to taxpayers via an app and a website, allowing individuals to participate in the research.

"This is becoming more important as the international arena becomes more competitive and the traditional ‘big pharma’ model becomes something far more fluid," said chief executive of the Association of the British Pharmaceutical Industry Stephen Whitehead, who welcomed the government's announcement.

"Government’s support for our industry is a significant step to opening up the NHS to research - this will make the UK a more inviting place to locate research and, therefore, investment. Ultimately, this leads to a better service for patients," he added. ®

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