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Wednesday, December 7, 2011

Government plans to share NHS patient details with private sector raises data privacy concerns

Critics warn that parts of the Government’s plan to share patient records with private companies give real concern over personal data privacy issues.Mr Burnham said it is “absolutely essential” that patient data is safeguarded, after The Sunday Telegraph revealed David Cameron will use a keynote speech to outline far closer “collaboration” between the health service and life science companies.


The Prime Minister will say that the controversial industry has the potential to be a powerhouse of Britain’s 21st century economy, but that it is stifled by excessive regulation at present.


Speaking to Sky News, Mr Burnham said that while he did not object in principle to close ties between the NHS and private sector life science companies, he was concerned that “one of the patients’ groups that was on the working group looking at this issue has walked away”.


“That gives real cause for concern and rings alarm bells” he said. “The Government simply can’t say: ‘This is all red tape and it all must be brushed away’”.


“Proper regulation, essential safeguards need to be in place when it comes to the use of patient data.”


The move, which will give life science companies more freedom to run clinical trials inside hospitals, is likely to face a backlash from privacy campaigners who have consistently opposed private companies being given access to medical records.


There will be particular opposition from animal rights activists who object vehemently, and sometimes violently, to vivisection, while religious groups, particularly the Roman Catholic Church, could object to firms that use stem cells harvested from embryos being allowed access to NHS data.


One senior executive at a leading drugs company well-known for using animal testing said: “You can look at the NHS as one massive database with 60 million people in it.”


The Prime Minister will stress that greater integration between private companies and the NHS could advance medical science, give patients greater access to cutting-edge treatments and save money, while boosting economic growth.


With Britain teetering on the brink of a double-dip recession, ministers are keen to show that they have a positive vision of the future.


“Britain has the potential to become a powerhouse in the world’s life sciences industry,” said a Downing Street source this weekend.


“We want to see much closer collaboration between the NHS and life science companies — not just greater data-sharing, but more clinical trials in hospitals.


“These changes will not only boost the industry, but also potentially give the NHS early access to new, innovative drugs treatments.”


Welcoming the move, Andrew Witty, the chief executive of GlaxoSmithKline, one of the world’s largest pharmaceutical companies, said: “Any action the Government takes to improve the environment in this country for life science across these activities is welcome.”


Britain is considered uniquely placed to become a world leader in life sciences because of the strength of scientific research at its top universities and the amount of data and expertise amassed by the NHS since its creation in 1948.


The industry already employs about 160,000 people in 4,500 companies, ranging from large multinationals to small businesses.


These firms employ highly skilled researchers with PhDs down to lower-skilled workers in drugs manufacturing plants.


Whether such companies would be charged for access to NHS records was not clear.


Although personal information should be anonymised, the public sector has an appauling history of handling the personal details of citizens.


Numerous health trusts have been criticised for losing patient records in recent years and HM Revenue & Customs has previously lost the financial records of millions of taxpayers.


Privacy campaigners led a vigorous campaign against the previous Labour government’s plans to place every medical record on a central electronic database.


It is understood that the Medicines and Healthcare Products Regulatory Agency would oversee the sharing of NHS data with businesses.


Joyce Robins, from Patient Concern, said many people would be “deeply disturbed” by the notion that their private medical records could be handed to firms seeking new markets.


“Even when they say records will be anonymised, the amount of detail contained in medical records means that companies may be able to find ways to target people with particular conditions,” she said.

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