Early next year, leaflets will begin dropping through millions of English letterboxes advising people of an important civil right. This is the option to bar information in personal electronic health records from being shared across the new NHS-wide computer system.
The government hopes that only a handful of patients will exercise this right; otherwise £6.2bn invested in new IT will be wasted. This week, it published 12 commitments aimed at reassuring patients and doctors that the new systems will be at least as trustworthy as today's stand-alone computers and racks of paper records.
The "care records guarantee" promises that electronic health records will be accurate, that only people who need to will be able to read them, and that anyone breaking the rules will be caught and disciplined. The guarantee also clarifies some of the confusion that has built up around the "opt-out" question. Commitment number six reads: "You can choose not to have information in your electronic care records shared."
In another measure designed to maintain confidence in new NHS systems, the government's IT chief revealed this month that the NHS will be allowed to maintain its own separate system of identity numbers if and when the new national identity register arrives. NHS officials also promised to knock on the head a suggestion that data from electronic medical records might be fed into the national census.
Whether these measures will be enough to reassure critics remains to be seen. Groups representing doctors and patients say they still have reservations about how the measures in the care records guarantee will work in practice.
Opinions about the security of electronic health records are polarised. Supporters say the new joined-up care records service, due to go live next year, will be better than existing practice because computers can control access and record every time a record is opened or changed. Under current practice, patient folders are often left unguarded on trolleys.
Opponents say the current system is secure because it is inefficient. The chances are tiny that a corrupt or malicious NHS employee will stumble across a pop star's mammogram. Integrating a nation's records on to one system, however, makes them all potentially accessible by hundreds of thousands of people. Even if a snooper is certain to be caught and convicted, the damage will have been done. There is also the "function creep" argument - that, sooner or later, the sheer wealth of data in joined-up electronic health records could tempt future governments to use it for other purposes.
The Office for National Statistics raised such a spectre this month when a consultation document suggested that data from NHS computers might be a "key source" for the next census. Harry Cayton, chair of the NHS board that drew up the care records guarantee, said he would write to the office telling them that this suggestion is out of bounds.
Cayton said that while the guarantee would not convince opponents of "government databases of any kind", he hoped that only "a small number" of patients will feel strongly enough to opt out.
At first, the offered opt-out will be fairly crude. NHS patients will not be able to withhold their "demographic data" - name, number and administrative details. As at present, these will be available across the NHS's intranet. "If you want to be an NHS patient, you can't opt out of existing," Cayton says. Neither will they be allowed to demand their doctor not keep records at all: information is needed to audit care and in case of malpractice claims.
What patients will be allowed is to tell their doctor that they do not want their medical record shared with any organisation apart from the one that created it. Patients taking this step will be warned that this could damage the quality of their care. "In extreme circumstances," the guarantee warns, "we might not be able to offer you the most appropriate treatment."
Eventually, the NHS will offer a more selective opt-out. Patients will be able to put pieces of information in a "sealed envelope". This would allow them to conceal episodes such as abortions or psychiatric treatment while making sure their basic medical history was available. However, the NHS has not yet said when the sealed envelope will be available. "Obviously, we have to get the basic service working first before we can start sealing bits off," Lord Warner, the health minister responsible for the IT programme, said this week.
Before any part of the system goes live, doctors will have to be persuaded it is ethical for them to use. The British Medical Association, which has led past criticism, is in a conciliatory mood. Dr John Powell, chair of the BMA's health information management committee, commended the guarantee for providing "some clarity" on issues of records-sharing. He said the BMA welcomes patients being given a choice. However, he said discussions would continue about exactly what data would go on to the shared record and on whether patients should be asked to opt in to data sharing rather than opt out of it. That is a road the government does not want to take.
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