Patients' NHS records could be shared with private firms

 
A hospital waiting room Patient Concern says the aims of the scheme to share NHS records are "laudable"

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Healthcare companies could be given access to anonymous NHS patient records and other NHS data under new plans.

On Monday, Prime Minister David Cameron is due to unveil the plans intended to help the UK life sciences sector become a world leader, and give patients faster access to new treatments.

Campaign group Patient Concern fears the "death of patient confidentiality".

The government promised "all necessary safeguards". It is unclear whether the plan covers all or part of the UK.

The prime minister, due to make a keynote speech on the plans in London on Monday, is expected to give life science companies more freedom to run clinical trials inside hospitals.

The government says that the cradle-to-grave principle of the NHS means it has some of the most detailed and comprehensive patient data in the world.

'Vital importance'

Ministers believe Britain can become a world leader in the field of life sciences because of the vast expertise within the NHS and its strong university-based research.

Start Quote

We will not allow David Cameron to throw away essential safeguards”

End Quote Andy Burnham Shadow health secretary

The industry already employs 160,000 people in 4,500 companies, with a turnover of £50bn a year.

Under the plans, NHS records would be made anonymous, but it is not clear whether private firms would have to pay to access them.

A government spokesman said: "The life sciences industry is of vital importance to the UK economy and we are committed to greater collaboration with the NHS to ensure that patients can get faster access to valuable innovative treatments.

"All necessary safeguards would be in place to ensure protection of patients' details - the data will be anonymised and the process will be carefully and robustly regulated.

"Healthcare charities, researchers and clinicians are calling for this action in order to improve research, innovation and the development of medicines in the UK."

Mr Cameron will outline plans for an "early access" scheme allowing seriously-ill patients, such as those with cancer, to get new drugs up to a year before they are fully licensed.

Some medicines can take up to 20 years to be approved.

But the proposals have been criticised by privacy campaigners who oppose wider access to medical records.

'Desperation'

Roger Goss, from Patient Concern, told the BBC: "This is the death of patient confidentiality.

"There is no guarantee that information will be anonymised, in any case anonymised data can just as easily be re-identified.

"We understand GP surgeries will have the right to refuse to release their patients' records, but whether patients will ever be told what is happening, let alone have the choice to protect their privacy, is still unclear."

Patient Concern resigned from a Department of Health consultation committee looking at the plan because it was felt the organisation had been "recruited to applaud rather than advise", Mr Goss said.

But he added that the aims of the scheme were "laudable", and his organisation would approve if it was confirmed patients would get a choice whether to participate.

Shadow health secretary Andy Burnham said he did not object in principle to a closer partnership between the NHS and the life sciences sector as this "could be good for both sides".

But he told Sky News it was "absolutely essential" patient data was safeguarded and this could not be treated as "red tape to be brushed away".

"Proper regulation and essential safeguards need to be in place when it comes to patients data," he said. "It cannot be done in a way where essential rules are threatened."

Meanwhile, other government-held data - such as the Met Office's weather records - could also be opened up under the plans.

 

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  • rate this
    +22

    Comment number 323.

    This data will not be anonymous, it will be pseudonymous and as such it will be not be absolute secure. Tests have proven this theory. Does anybody really think that this is to benefit the patient care rather than what I suspect is the pockets of lobbyists companies. We will still pay for any new drugs at outrageous rates. Will this data leave this country?

  • rate this
    +21

    Comment number 295.

    While it sounds like it could be beneficial, the history of confidentiality blunders is going to make this a very shaky proposition. How anonymous exactly is "anonymous"? It takes very little information to start piecing together personally identifying details; even common reports can give things away.

  • rate this
    +43

    Comment number 138.

    Who will pay for all the work hours that are needed to ensure that personal health records remain anonymous? Will the cash strapped NHS have to pay clerical/medicalstaff. It's not just question of removing a name from the front cover; letters, test results, admission data etc all contain personal information. I doubt that there are many pages in a health record that do not identifiy the patient.

  • rate this
    -21

    Comment number 130.

    Recent analysis of such data has already proven that weekend care at many hospitals needs improvement. The information in these records are a goldmine of information that can be used to improve the NHS.

    Supermarkets record your purchase history if you pay with a card or if you use your club card and yet people don't seem to mind this. This data is mined for information too and is not anonymised.

  • rate this
    +58

    Comment number 36.

    GP records are currently so secure much of the NHS cannot access them. If these become commercially available my concern is that non-one will be able to guarantee confidentiality. Removing personal details is not enough to guartantee anonymity, for example of those with rare conditions. Policing this properly will be expensive, policing it badly may constitute a breach of human rights.

 

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