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DoH sticks to 'opt out' for patient e-records

Patients have a 'realistic' period to opt out

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The Department of Health (DoH) has stuck by the "implied consent" model for the central collection of electronic patient records in England, but will provide support for those who want to opt out

Health minister announced the plan along with the publication of a taskforce report on the Care Record Service on 18 December 2006.

Before records are uploaded onto the National Care Record Service (NCRS), patients will be given a chance to view their records on a section of the Healthspace website. They will be able to make corrections, give their GP consent to upload the details, or choose to have them withheld.

If, after a "realistic" period, it would be assumed that those patients who have chosen not to view their summary care record are giving implied consent for it to be shared in appropriate settings. The DoH did not specify the length of the period.

The move will be supported by a "robust" public information programme for the early adoption sites. This is due to begin in February 2007, in preparation for the launch of the pilot programme during the spring.

There has been a sometimes fractious debate about the plan to use the opt out model for the NCRS, which will provide a central electronic record of details such as current medication, allergies and adverse reactions. Some groups, including the British Medical Association, have argued for an opt in model in which the patient would have to give explicit consent for the details to be uploaded.

The BMA produced a conciliatory reaction to the announcement. Its chairman, James Johnson: "The recommendations in this report provide a good first step, and we look forward to building on this work and learning more from the roll out of the early adopter phase which should help identify any further issues before the summary care record is implemented across England in 2008.

"It is crucial to the success of the NHS Care Record that the anxieties of both patients and professionals are properly dealt with and that the wishes of patients are fully respected."

Warner also announced the establishment of an advisory group on the implementation of the NCRS, to be chaired by Martin Marshall, deputy chief medical officer. He said that the recommendation on a training pack for staff was already being taken forward.

He added that the internet based HealthSpace, introduced in 2004, will be expanded and brought forward to be available in the summary care record early adopter sites. It will enable the public, when registered as users, to view their summary care record. The taskforce recognised the opportunity this represents for a "true patient care record."

In addition, he announced the establishment of a National Information Governance Board to oversee the quality of information governance in the NHS, to offer advice on confidentiality and security of patient information, to monitor the implementation of the NHS Care Record Guarantee and to advise the secretary of state. The board will be chaired by Cayton and further details about the arrangements for the new Board will be announced shortly.

Harry Cayton, the DoH director for patients, said: 'Members of the taskforce agreed that the creation of the summary care record is a tremendous opportunity to improve the safety, quality and efficiency of care for all patients but that it must be implemented with public support and clinical confidence…. We now have a clear way forward and will learn from the early adopter sites as we go along.'"

Sigurd Reinton, chairman of the London Ambulance Service NHS Trust and taskforce member, said: "In thinking about their options, I hope people, especially the elderly and vulnerable, will bear in mind that if we have your information then paramedics, for example, will be able to offer the best possible treatment. It is the elderly and the vulnerable who may miss out if they have to formally opt in."

The taskforce noted that, until it is possible to seal off parts of the record, it should only include non-sensitive information, and handling any sensitive information should be agreed with patients. It also agreed that as the system matured the content of the record should become more complete.

This article was originally published at Kablenet.

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