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Patients can block uploading of medical records

UK government ministers have agreed that patients can block the uploading of confidential medical records to the proposed NHS electronic patient record database

UK government ministers have agreed that patients can block the uploading of confidential medical records to the proposed NHS electronic patient record database, rather than the previously announced ban on simply sharing records.

The decision to allow patients to block the uploading of their health data came as the UK department of health moved nearer to a workable compromise between itself and a split among doctors over the rights of patients to opt in or out of having their electronic records shared.

According to Lord Warner, the minister leading the programme, pilot projects trialling a limited summary covering current medications, allergies and adverse drug reactions, were scheduled for Spring 2007. How the block will be achieved remains unknown, however, and it is unlikely that full summary care records will be available nationally by 2010.

A public campaign will be run locally, informing patients that they have an undefined period of time to view their records and correct or amend them. The patient amendments would be done through an electronic patient portal known as Healthspace, or by viewing a printed copy. Patients will then be able to offer consent for their records to be shared.

It is currently the government's position that patients who do not amend their records after a ìrealisticî period of time will have given implied consent. It has been recognised, however, that ìsome patients may ask for their summary care record not to be shared or uploaded at allî. Lord Warner has stated that the government will abide by such demands, but it remains unclear as to how this will be achieved in practical terms and through current technology.

Further lack of clarity remains as to whether the new approach will require writing to each patient to tell them that their records will be uploaded, rather than relying on public information techniques.

Lord Warner added that more sensitive information, apart from drugs and allergies, would not be uploaded until the ìsealed envelopeî was available. This would allow patients to put medical information they deemed sensitive into a part of the record to be opened only in an emergency.

Lord Warner concluded that the government was now cautiously going forward, noting that it took the US Veterans Administration 10 years to reach a full summary record satisfactory to patients and doctors. His statement reveals that while the technical infrastructure may be in place by 2010, a full summary record remains unlikely to be in use, especially as the pilot projects are expected to continue until 2008.

A Guardian newspaper poll of over 1,000 GPs in November 2006 revealed that half would consider refusing to put patient records automatically on a new national database.

James Johnson, the chairman of the British Medical Association, said: ìThe recommendations in this report provide a good first step. It is crucial to the success of the NHS care record that the anxieties of both patients and professionals are properly dealt with.î

Helen Wilkinson, national coordinator of the ìThe Big Opt Outî campaign against the database, countered: ìPeople should opt out now, if only to wait and see if the government delivers the 'protections' that it is promising and whether they are credible.î

30th September 2008

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