Patients can boycott NHS system, says commissioner

Health dept does u-turn

The Information Commissioner has been told that patients will have the opportunity to refuse to have their details uploaded onto the new NHS medical records system. The news comes just weeks after the Department of Health refused patients that right.

The Information Commissioner's Office (ICO) has issued a report on the NHS Connecting For Health system, the patient record system which has suffered cost over-runs, delays, and controversy over the right to opt-out.

OUT-LAW recently revealed that the Department of Health had refused a large number of requests from patients that their details not be uploaded, and that the British Medical Association has threatened to ask doctors to boycott the system. Such a boycott would likely cripple the £12bn project.

"NHS Connecting for Health has confirmed that people living in areas introducing Summary Care Records will be contacted before any of their medical records are uploaded on to the NHS Care Record Service," the ICO report said. "They will be given information about their options to limit the future scope of the information on the Summary Care Record or the option not to have one at all and they will also be given the opportunity to make arrangements to view their information before it is uploaded. They will have a specified period before their information is uploaded to consider their options."

A number of patients wrote to the Department of Health asking to opt out of the system. The Department of Health wrote back to them refusing their request in December. "The reasons that you gave as the basis for claiming substantial and unwarranted distress are not based on an accurate understanding of the summary care record," the department letter said.

Though records can be uploaded without the explicit consent of patients, the ICO said other options must be made available to patients. "Explicit consent is only one of the conditions for processing sensitive personal data," said the ICO. "NHS Connecting For Health are confident they are able to meet the requirements of one of the other conditions.

"Once the basic health information referred to above is uploaded on to the NHS Summary Care Record you will be able to choose to remove some or even all of the information initially uploaded [or] keep the uploaded information but make the Summary Care Record invisible."

The ICO says it has been consulted about the data protection implications of the new system and that it is happy with the current measures in place, but would continue to monitor the system.

"The commissioner has been consulted by NHS Connecting for Health about their plans for electronic care records and can see the potential benefits these may bring. However, the NHS must continue to comply with the Data Protection Act 1998 and this is vital to guarantee that public confidence is maintained. The commissioner will be monitoring the implementation and operation of the new NHS Care Records Service to ensure patients are provided with adequate information and choices and that their health data is maintained in a safe and secure way."

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