Paper records only opt-out available to patients

The government’s policy allowing patients to opt out of the NHS Care Records Service is based on the decision that patients who do so will not be able to have any computerised records at all, according to the GP who was at the heart of national publicity about the issue last week.

Dr Paul Thornton, a GP in Kingsbury, Warwickshire, was featured on BBC Radio Four’s Today programme after his email correspondence with a senior Department of Health civil servant over the NCRS opt out policy.

In the email, Phil Walker, head of digital information policy at the DoH, appeared to correct assurances from health minister John Hutton that patients would have the right not to have their records stored electronically at all.

He told Dr Thornton: "The minister’s words do not reflect the true position."

In a later email he added: "Patients do not have any right to determine what is recorded nor to veto the media in which it is recorded."

The controversy prompted John Hutton to appear on the Today programme last week to defend his position.

He told the programme that Walker’s statement that patients did not have the right to determine what was recorded was correct. The minister then appeared toside-step the issue of information recording and moved on to the separate question of sharing information for which different rules apply.

Hutton said: "We’ve always been absolutely clear that under the new patient care records system that is going to come in over the next year or so patients will have the absolute veto on any information being passed to another clinician."

However Dr Thornton told EHI Primary Care this week that he believed the National Programme for IT’s opt out policy was based on the decision that patients who exercised their right to opt out would not be able to have any computerised records at all.

He added: "Their health care will be reverted to pen and ink on paper and will be enormously disadvantaged as a consequence."

Dr Thornton, a member of one of the Caldicott Committee’s working parties on privacy in the late 1990s, added that he believed the decision on opting out had been taken by focusing solely on the exemption allowed under the Data Protection Act, and that it ignored all other obligations, particularly the common law, the fair processing obligations and the Human Rights Act privacy provisions.

He said most GPs had been under the impression that there would be GP systems and that information could then be passed over to the spine with the facility to retain control of sensitive information on local systems.

He said ‘sealed envelopes’, another part of NPfIT’s confidentiality policy which offers patients the chance to limit access to sensitive information, would not work because they were too complicated and could also be overridden in certain situations.

Dr Paul Cundy, a GP in Wimbledon and joint chairman of the GPC/RCGP IT committee, said senior BMA representatives were planning a meeting at the beginning of May to look at the confidentiality issues with the NCRS.

He added: "I think the minister has a profound lack of understanding of the nature of general practice records. He seems to be under the impression that a patient cannot influence the nature of the record about them and that a doctor has to record everything without necessarily taking into account the patient’s views yet I do that on many occasions."

Dr Cundy said his view was that clinical messaging was the best method for allowing information sharing in the NHS.

He added: "For example if a patient goes into A&E the doctor gets consent from the patient to gets an extract from their GP record at that date and time which is then disposed of after care has been given."

Dr Richard Fitton, a member of NPfIT’s Care Records Development Board which developed the confidentiality policy, welcomed the debate on the opt out policy last week and said it had been discussed at last week’s CRDB meeting.

He added: "I can’t speak on behalf of the CDRB but my personal view is that it’s very important that all these issues are gone through even if they are uncomfortable. I believe it’s a good thing that patients take far more interest in seeing the information on their record and who has access to it and getting involved in getting themselves healthy."

He said his view was that GPs had to allow others some access to their records, particularly as in the last year most had opted out of our-of-hours. "GPs haven’t yet quite come to terms with the fact that if they are only available 50 hours a week in what way and how are they going to make their records available out of hours."

A spokesperson for NPfIT commented: "Our intention is to create a system in which both clinicians and patients have sufficient confidence that very few people will want to opt out. That is why we are allowing every patient to decide how widely, if at all, the information in their record is shared with other health professionals. The benefits of the electronic record system for patients in terms of quality of care, safety, efficiency and reliability are enormous.

"GPs are already under obligations to ensure they maintain accurate records and many GPs have expressed a desire to receive accurate records from other parts of the NHS to facilitate their role in the provision of medical services to their patients. This can only be achieved through the use of electronic records as paper has been proven time and time again to be both inadequate and on occasion outright dangerous.

"Should patients wish to have some or all of their record constrained – and kept off the NHS CRS – they will of course be given the opportunity to take this informed choice in conjunction with the care professionals who are providing services to them.

"The issues raised by patients who do decide to opt out of the national care records system are complex and are being considered by the National Care Records Development Board, the clinical leads for National Programme for Information Technology and the relevant professional bodies.”