Opt-out consent model to be kept for SCR

 The government is to stick to its plan that patients must opt-out of the NHS Care Records Service (NCRS), although some patients will now get the chance to view their record online before information is uploaded for sharing.

The decision appears to have won the backing of the British Medical Association and the Royal College of General Practitioners (RCGP) even though both organisations’ policy is that patients should be asked to give explicit consent to opt-in to the NCRS.

A ministerial taskforce on implementation of the Summary Care Record (SCR) published its report today and its recommendations for the retention of an implicit consent model for the NCRS while widening the opportunities for patients to opt-out have been accepted by the Department of Health (DH).

Health minister Lord Warner, who set up the taskforce, said the DH will now go ahead and introduce the SCR in early adopter sites from spring 2007, as originally planned.

He said: “I am grateful to the taskforce and pleased that it agrees that a Summary Care Record will significantly improve the safety and efficiency of patient care. This is especially true when treatment is being delivered where the patient’s usual records are not available, for example by paramedics, out of hours centres, walk in centres and A&E departments.”

The taskforce’s report reinforces the existing plans for a public information programmes to be run in early adopter sites before any records are uploaded for sharing. The taskforce says the publicity should inform patients that they have a “defined and realistic period of time” to view their summary record, either via HealthSpace or via a print out from their GP before it is uploaded. Those who do so would be able to correct or amend their record and offer explicit consent for their record to be shared.

The report adds: “After a realistic period of time, 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 taskforce has recommended that the implementation of HealthSpace, the portal though which patients will be able to view their SCR, should be brought forward and introduced in at least half the early adopter sites. Others would be able to see their summary record via a print out from their GP.

The report adds: “The provision of HealthSpace in early adopter sites will allow comparisons to be made between both implied and explicit consent models and also allow an assessment of the value of patient involvement in data quality.”

The report acknowledges the difference in opinion between the supporters of an opt-in and opt-out model and emphasises the importance of learning from the early adopter sites.

Harry Cayton, chairman of the taskforce and DH 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. I am very grateful to all the members of the taskforce who have created a practical implementation plan which deals with some legitimate differences of opinion. We now have a clear way forward and will learn from the early adopter sites as we go along.”

The report makes it clear that there is as yet no solution to the issue of patients who not only wish their information to be withheld from being shared but are also opposed to their data being uploaded to the NCRS.

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. The intention remains to make the content of the record more complete as the system matures.

The report’s suggestion that an advisory group of stakeholders be set up to oversee the future development of the Summary Care Record has been adopted by the DH who announced the group will be chaired by deputy chief medical officer Professor Martin Marshall.

The report says: “One of [the group’s] roles would be to consider how best to address the issue of the small number of individuals who do not wish to have a Summary Care Record in any form.”

The Big Opt Out Campaign, which has led calls for patients to be allowed to keep their information only on practices’ local systems, rejected the taskforce report.

Helen Wilkinson, national coordinator of TheBigOptOut.org, said: “So long as ministers continue to demand that all GP records will be kept at hosting centres under government control, the opt-out is a joke.”

The report acknowledged that once sealed envelopes are available patients will have much greater control over who will see their information and suggests that in the mean time it should be limited to “non-sensitive” information. Latest briefing papers from Connecting for Health suggest sealed envelopes will not be available until 2008/9.

However in his press statement Lord Warner promises that patients in the early adopter sites “will be able to add comments to their record and request that any part be removed.

BMA chair, James Johnson, said the association had been calling on government for greater consultation with doctors on IT issues and so welcomed the establishment of a taskforce to try to resolve issues surrounding the implementation of SCRs.

He added: “"Today’s report represents the culmination of many months of hard work and is the first of its kind to look at the ethical and practical implications of sharing electronic Summary Care Records. 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."

The report also recommends that the early adopter sites should include use of the Summary Care Record by the emergency ambulance service and NHS Direct as soon as possible.

Sigurd Reinton, London Ambulance Service NHS Trust chair 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 report also recommends that the DH commission the RCGP to produce standards for good electronic patient summaries and a toolkit to support implementation.

RCGP chair, Dr Mayur Lakhani,  said the report’s recommendations addressed concerns expressed by patients and the profession and would allow the “cautious introduction” of summary records.

He added: "We shall remain vigilant about our key concerns regarding consent, data quality and security by following carefully the experience of the early adopter sites. We particularly welcome the emphasis on staff training, data quality and patient involvement.

“In respect of data quality, we welcome the opportunity of doing further work with our stakeholders to produce rigorous standards for electronic patient summaries – along witha toolkit for their implementation – and urge the speedy introduction of a public information campaign to properly inform patients of their choices.”

Link

Report of the Ministerial Taskforce on the NHS Summary Care Record

DH briefing papers of Summary Care Record