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Contents of summary care record are to be scaled back

BMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c5714 (Published 12 October 2010) Cite this as: BMJ 2010;341:c5714
  1. Michael Cross
  1. 1London

The most clinically contentious element of Labour’s £13bn (€15bn; $21bn) programme to computerise the NHS in England has received a new lease of life from the coalition government.

Simon Burns, the health minister responsible for IT, indicated this week that electronic summaries of patients’ health records would continue to be uploaded onto an NHS-wide computer system.

However, the minister endorsed the findings of two reviews that recommend limiting the ambitions of the summary care record and giving patients more information about their right to opt out of having their information shared.

The Department of Health said that the two reviews concluded that electronic summaries of core patient information “will prove valuable for patients needing emergency care.”

Bruce Keogh, medical director of the NHS in England and chairman of the first review, told ministers, “It is reasonable for citizens to expect that when they arrive in an accident and emergency department or require treatment out of hours clinicians have access to the essential medical information they need to support safe treatment and reduce the risk of inadvertent harm.”

But he said that the core record should contain only a patient’s demographic details (name, address, and NHS number), treatments received, allergies, and adverse reactions. This data should be copied from the GP’s records and any further information added only with the patient’s explicit consent.

A separate review, chaired by Joan Saddler, national director for patient and public affairs at the health department, recommended new efforts to inform patients of their right to opt out of the summary care record. Although the review said that there was no need to resend a letter to patients who have already received information, future letters should be simplified and include an opt-out form to make the process “as easy as possible.”

The review also supported efforts to put patients in control of their records—a pledge in the Conservative manifesto—through systems such as the NHS HealthSpace website (www.healthspace.nhs.uk).

About three million summary records have already been created as part of the national programme for IT in England. The overall programme has already been trimmed back since the election and is expected to be supplanted by a new NHS information strategy to be published later this month.

Although the reviews of the summary care record represented a wide consensus of views, they are unlikely to end the controversy that has surrounded the project over questions of privacy, accuracy of data, and clinical effectiveness.

A spokesman for the BMA, which had originally argued that patients should be required to opt in to the system, said, “We welcome the progress that has been made towards an emergency electronic record that supports urgent care yet recognises many of the understandable concerns of patients and clinicians. Much will depend on the way the amended scheme is put into practice, and the BMA looks forward to continuing our work with government on its implementation. It is essential that patients have genuine control over who has access to their records and when changes are made to them.”

A leading expert in healthcare informatics, Trisha Greenhalgh of Queen Mary College, London, who led an independent evaluation of the scheme, welcomed the reviews as a sign that “everyone has now drawn breath” on the summary care record.

“The advice that the programme should unfold in a more restrained way, with a very tight and clearly understood scope, makes a lot of sense. What we don’t yet know is whether, even with this steadying hand, the programme will now progress without major complications.

“We don’t know whether the potential for the summary care record to save lives will be converted into actual saved lives, especially given the ongoing concerns about data quality. And we do not know whether maintaining this database will continue to be seen as a cost effective decision by NHS organisations.”

Notes

Cite this as: BMJ 2010;341:c5714

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