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The Government has agreed to let patients keep details of their medical records private after they are uploaded electronically on to a new NHS database.
In a policy U-turn, Lord Warner, a health minister, said that he had accepted the recommendations of a task force on the electronic patient records system. The Government is to stick to its plan that patients will have to opt out of the NHS Care Records Service - but there will now be the chance for patients to view their record and amend details online before information is uploaded for sharing.
They will also be able to consent to how their information is shared with professionals across the NHS in England.
But campaigners and privacy experts dismissed the promise of an opt-out to the national system as a joke.
Doctors across England will be able to access data on people's medication, allergies and adverse drug reactions. The electronic holding of more sensitive data, such as HIV status, is still under consideration.
Ministers had argued that compulsory e-records were necessary because the paper-based system was putting patients at risk. But Harry Cayton, the patients' ombudsman, argued that changes required "public support and clinical confidence".
Pilots will start in the spring and an advisory group will look at how a veto can be achieved. Patients will be able to see their records online before they are put on the database and amend details or prevent them being shared. If they do not register opposition to electronic records, consent will be assumed.
Patients can also object before their information is even put on to computers by arguing that an electronic record would cause them "significant mental distress": the Government is legally required not to store them if this is the case.
Lord Warner said yesterday: "We believe that, despite the noise it has generated, patient care records will be of huge benefit to patients' care."
The new system is intended to link GP surgeries in England electronically to hospitals but could potentially be used by other personnel, such as police.
The decision appears to have the backing of the British Medical Association and the Royal College of General Practitioners even though the policy of both is that patients be asked to opt in by explicit consent. James Johnson, of the BMA, said: "The recommendations provide a good first step and we look forward to building on this work."
Doctors, patients and data protection experts have expressed fears that a compulsory system could jeopardise the GP-patient relationship and confidentiality. Ross Anderson, a professor of security engineering at Cambridge, said that the prospect of a "sealed envelope" to safeguard privacy would only apply once files had been uploaded to hosting centres or the "spine", as the NHS database is known: "The risk is that once this information is there, people will come up with all sorts of reasons for accessing it that cumulatively could result in an erosion of privacy."
Latest papers suggest that "sealed envelopes" will not be available until 2008-09.
In the meantime, patients should lobby their GPs to prevent their records being uploaded, Professor Anderson said. "We are not saying that there should never be a central database but are advising patients to opt out now and see what happens, with the option of uploading their records should the Government make good on its promise to create a system that will protect privacy."
Helen Wilkinson, of the Big Opt Out campaign group, said: "So long as ministers continue to demand that all GP records will be kept at hosting centres under government control, the opt-out is a joke."
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