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Should GPs opt all their patients out of the care record?

Until the pros of the Summary Care Record have been shown to outweigh the cons, we should opt all our patients out, says Dr Prit Buttar, who's doing exactly that. But Dr Manpreet Pujara warns denying patients the benefits of a care record by opting them out without consent is a throwback to the bad old days of 'doctor knows best'

Until the pros of the Summary Care Record have been shown to outweigh the cons, we should opt all our patients out, says Dr Prit Buttar, who's doing exactly that. But Dr Manpreet Pujara warns denying patients the benefits of a care record by opting them out without consent is a throwback to the bad old days of 'doctor knows best'

When looking at any innovation in healthcare, consider its advantages and disadvantages. If the pros outweigh the cons, the project should then be weighed against its cost. Only at that stage can a rational decision be made about its value.

What are the benefits of the proposed Summary Care Record? It will provide clinical information for doctors who see patients elsewhere than the patient's own surgery. This seems such a self-evident benefit that few consider whether any actual evidence is needed of it. My patients are seen regularly in A&E, minor injuries units and by the out-of-hours service, without any care record being available - and I can't remember one occasion when a patient's care has been compromised or even delayed because of its absence.

The record has two disadvantages - its potential for accidental security breaches and the possibility of deliberate misuse. Government agencies have a terrible record when it comes to protecting data.

It's almost certain that once a care record database exists, someone will download part of it onto a memory stick and then lose it. As Pulse reported earlier this month, there were 76 incidents of data security breaches in NHS London alone over the past financial year, with nearly 38,000 sets of records lost, stolen, misplaced or inappropriately released. Until it can be shown that sufficiently robust safeguards are in place to prevent losses, it's unwise to continue to collect patient data.

Last year, the Government attempted to include a clause in one of its bills that would have allowed it to sell data 'for research purposes' from NHS care records without the consent of the patients concerned. The clause was only withdrawn at a late stage. I'm not sure I regard the Government as a trustworthy agency for holding so much sensitive information and deciding who should have access to it.

The Summary Care Record's balance of advantage and disadvantage therefore seems far from favourable. Its clinical value seems limited and the NHS lacks the ability to protect the data from loss or misuse. But even if the balance were in favour of the record, there remains the issue of its cost. At a time when, like every part of the public sector, the NHS faces a long period of spending constraints, is it sensible to spend such huge resources on a project that will be of very limited benefit?

The BMA has consistently insisted that inclusion in the care record should be voluntary, and based on the principle of patients opting in, rather than opting out if they object. In keeping with this, and because of our misgivings about data security, my practice has adopted a policy of automatically opting out every patient unless they choose to opt in.

This is made clear to all new registrants at the practice, and all patients have been informed of the policy by posters in the practice and via our website. It's a year since we adopted this policy, during which we have registered about 1,400 new patients with the practice. None of these new registrants, and none of the existing patients, has asked to be included in the care record.

It can be argued that we deprive patients of the possible benefits of involvement in the care record. But we feel these benefits have not been clearly demonstrated, and that the onus is on those developing the record to promote its advantages, rather than assuming these are so clear that everyone should meekly co-operate.

Until the benefits of the record can be shown, the weaknesses in NHS data protection fixed and the Government has demonstrated it will not misuse information, we should approach the project with extreme caution.

Dr Prit Buttar is a GP in Abingdon, Oxfordshire, and chair of the GPC practice finance subcommittee

The idea that doctors know what's best for their patients is long buried - these days we are encouraged to offer choice and make joint decisions with our patients. I find it unbelievable that some colleagues feel they can act on their patients' behalf and opt them out of the Summary Care Record without explicit consent.

Our patients are used to GPs employing the computer as a tool for accessing and recording their clinical and demographic details. When they come to see us after a visit to hospital they expect us to have access to their hospital record and are surprised when they realise NHS computers are not linked up.

They see IT working in their everyday lives and expect the health service to harness its benefits. They expect GPs to have access to details of tests or medication that took place in hospital, and that a doctor seen away from the practice will have access to essential information their GP has recorded about them.

I'll be encouraging my colleagues to get involved in implementing and using the care record, which can only improve patient care, particularly for those with long-term conditions and on multiple medications. The initial public information programme is now complete in our area and patients and doctors will now expect the care record to be available to them, especially out of hours.

With the recent change in the consent model, patients can feel reassured that their record will only be accessed with their consent. The IT system will remind GPs to ask patients for consent before they access records. Some think it is unreasonable to expect them to ask for consent, but for me, it's equivalent to asking for consent to examine a patient.

But in this era of patient choice, it seems strange that GPs should act on their patients' behalf and choose to opt them out by recording the Read code 93C3 in all their patients' records. Patients have the right to be involved and it's their choice whether to have a care record or not. The public information programme gives them 12 weeks to opt out if they wish. This, and the ability to opt out later and delete any record created, is far preferable than to be opted out by their GP with no consultation.

Connecting for Health's model allows the creation of care records for everyone and is particularly helpful in caring for vulnerable patients with complex conditions and who are taking many different drugs. Patients retain control as they can always refuse permission to access their record or have it deleted later.

The Medical Protection Society's advice for practices adding the 93C3 code into patients' records without asking them is - don't! This seems to have been accepted by GPs in my area as they recognise the benefits, especially for out-of-hours work.

It would be a tragedy if a patient came to harm because key clinical information was unavailable as the patient had been opted out without their knowledge.

GPs are the guardians of their patients' data and have a responsibility to ensure any information entered into the record is accurate. So it is incumbent on every GP who chooses to opt their patients out of the care record to at least write to them giving their reasons. But my own feeling is that our job is to provide information and act in the best interest of our patients - not to opt them out of the care record on their behalf.

Dr Manpreet Pujara is GP national clinical lead for NHS Connecting for Health and a GP in Rochester, Kent

yes no Should GPs opt all their patients out of the care record?

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