Government concedes opt out of NHS database

Privacy advocates are calling on patients to boycott centralised health records

A senior government official agreed on Thursday that patients should be allowed to opt out of having their personal health information put on a centralised medical records database.

The government is investing at least £6bn over the next nine years to update the NHS' IT systems, including putting patient data from the hospital and GP computer systems into a centralised database, which can be accessed by health professionals and government officials around the country.

Earlier this year, officials from the NHS National Programme for IT said that patients can only opt out of having their data stored in 'extreme circumstances'.

But Caroline Flint, the parliamentary under-secretary at the Department of Health, said on Thursday that people will not be forced to deregister from the NHS in order to prevent their health information from being shared.

"We recognise that there will be some people who feel so strongly about what they see as threats to the confidentiality of their personal health information that they will seek to remove any possibility of this information being shared within the NHS. Let me make it clear, however, that we do not envisage any circumstances in which patients who choose to have some or all of their records deleted will be 'deregistered' from the NHS or otherwise denied NHS care against their wishes," said Flint in a House of Commons debate.

This follows the case of a health professional, Helen Wilkinson, who discovered she had been mistakenly registered as an alcoholic on her medical records. Concerned about who might have access to this false information, she asked to have her records removed from the NHS systems. After being told this was not possible, she decided to withdraw from the NHS as a patient so that her records could be removed from NHS computer systems.

Wilkinson's story was related to the House by conservative MP Paul Goodman, who explained the risks of having potentially sensitive information accessed by a large number of people.

"Other NHS patients will be as concerned as Helen about the confidentiality of their records, if those records end up on a national system that a large number of NHS bodies and individuals, including social workers for example, can access," said Goodman. "Those records will contain information about such sensitive matters as sexuality, ethnicity, genetics, mental health, intellectual impairment, illicit drug use, imprisonment, abortion, contraception, impotence, paternity, infertility, HIV, personal relationships, domestic violence, rape and abuse in childhood."

The government argues that the centralised system is important to improve patient care and allow patients to be treated by different health professionals in different environments.

But Ross Anderson, a privacy advocate and Cambridge University professor, told ZDNet that a centralised medical system could be detrimental in emergency situations.

"The last thing an A&E [accident & emergency] consultant wants is to be confronted with a medical record -- all 4 gigabytes of it. You treat what you see," said Anderson. "If you have diabetes, you should have a bracelet or card in your wallet. If you suddenly get rid of these and put the information in a fancy computer, what's going to happen if you keel over on a jet over the Atlantic, or the server crashes, or the doctor forgets his password."

Anderson said the public should use the opportunity that the government has given them to boycott the centralised system.

"If you have had surgery in the last 10 years, send a letter to the medical director of hospital and demand to be removed from all central NHS systems -- NWCS and HES. Write to your GP and insist that you are not put on the NHS data spine or care recovery service database," said Anderson. "If enough people boycott having centralised NHS records, with a bit of luck the service will be abandoned."