NHS coerces patients to stay on database, BMA warns

NHS hospital trusts have been making it difficult for patients to opt out of the national database of patient records, drawing criticism from the British Medical Association.

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NHS hospital trusts have been making it difficult for patients to opt out of the national database of patient records, drawing criticism from the British Medical Association.

During early adopter trials of the patient record system in Birmingham and Stoke-on-Trent, thousands of patients were being told they were not allowed to opt out unless they met face-to-face with NHS “advisers” to explain their decision.

Thousands of letters have been sent to patients advising them that they need to make an appointment with NHS advisers in order to opt out of the summary care record system.

Healthcare news website Pulse discovered the letters after it made a Freedom of Information (FoI) request.

Dr Vivienne Nathanson, BMA head of science and ethics, said: "It's surprising and very worrying that some primary care trusts are apparently making it so hard for patients to opt out.

"They should not be applying any kind of pressure. If it requires that kind of coercion, it's not real consent."

Connecting for Health, which manages the £12.7 billion National Programme for IT (NPfIT), told Computerworld UK the decision to ask people to explain themselves in person had been taken by the local trusts.

"The recommendation in the original guidance that people should opt out in person was to give anyone who had concerns the opportunity to discuss them with their GP or another healthcare professional," a CfH spokesperson said.

An NHS South Birmingham spokesperson told the Guardian newspaper that patients were being asked to opt out in person “to ensure the patient understands all the implications and to answer any questions". NHS Stoke on Trent said it was simply a case of confirming the identity of anyone opting out.

The opt out method has drawn repeated criticism in the past. A governmental advisory report last year questioned the legality and fairness of automatically opting in patients to the database, known as the Spine.

But the NHS has refused to end automatic opt-in to the national system, instead only allowing patients to opt out - in writing or during appointments - after their record had already been created.

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