Opt out or NHS records will be shared

Topics covered: Ridouts professional advice

The health records of every NHS patient are to be pooled in a vast database which can be accessed by researchers and pharmaceutical companies. This will help improve research but campaigners warn it could breach privacy.

From April 2014, peoples’ medical histories will be shared with researchers and pharmaceutical companies unless they opt out.

Leading charities including Cancer Research UK, Diabetes UK and the British Heart Foundation have launched a campaign to highlight the importance of allowing the notes to be accessed for the advancement of medical science. The database should help them understand the causes of disease, spot side-effects to new drugs and detect outbreaks of infectious diseases.

Although medics have promised that patients will remain anonymous, data protection campaigners have warned that individuals risk being identified and that the notes may be inaccurate.

Health professionals have admitted the ‘care data’ database could be vulnerable to targets from hackers and criminal networks, but say it is necessary to improve the health service.

Professor Peter Weissberg, Medical Director at the British Heart Foundation, said: “Locked inside our medical records is a mine of vital information that can help medical scientists make discoveries that can improve patient care and save lives. With the right safeguards in place to protect patient confidentiality this new system will be of enormous benefit to patients and help reduce the burden of heart disease in the future. I don’t think anyone would say there is not a risk. But you can walk into a hospital and pick up notes at any time. People don’t because they are of very limited use outside of medical research. The benefits are enormous and the risks are small.”

Julia Manning of think tank 2020 health said: “Such is the secrecy surrounding our medical records, most of us have never seen them. Only occasionally are we made aware that this means they could have significant errors in them. Stories occasionally come to light in the press of people denied insurance payouts for a condition they didn’t know they had or for a condition that they didn’t have but their records say they did. People’s private medical information should not be uploaded to a national database until they are fully informed of process and confident their personal information is correct.”

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