Leaders of the NHS information technology (IT) programme said last week that they will stick to a controversial policy on patients' consent. The policy will require that patients who do not want their data on the new system to be shared to actively opt out.
Mike Pringle, one of the programme's clinical leads, said last week that the alternative “opt in” policy proposed by the BMA's General Practitioners Committee would jeopardise the quality of care.
However, in response to concerns about confidentiality the leaders have promised to make two changes to the way the scheme's central systems handle information on patients.
The programme is a third of the way through a 10 year scheme to create a system of shared electronic health records in England. With central contracts worth more than £6bn ($10.4bn; €8.7bn) and local implementation costs adding at least the same again, it is the world's largest civil IT programme.
The centrepiece is the care records “service spine,” the main function of which came into service in January to support the electronic booking of secondary care appointments.
Professor Pringle told journalists last week that two flaws had come to light in the way the system displays information on screen about individual patients. One is a label indicating whether a patient has “disabilities.” Professor Pringle said this was intended to mean that the patient needed help communicating with NHS staff. “That flag will be renamed.”
Another screen marker shows whether a patient has given consent for their record to be shared across the care records service. At present this label can be changed by anyone logged on to the system. Professor Pringle said, “That was not the intention.” Access will be restricted in future.
Professor Pringle defended the design of the care records spine against another criticism, that it allows any NHS user to call up any patient's “demographic” details: their name, address, and NHS number. He said this capability was essential for emergency care, and he stressed that the system would bring up only one “match” for each inquiry.
Explaining why the NHS continues to assume that patients wanted their records made available on the care records service unless they actively opted out, Professor Pringle said that this reflected the views of the general public. The danger of requiring patients to opt in after every encounter with the health service is that the request would become “formulaic … it wouldn't be informed consent.”
He said that the care records service would, in theory, support either model of consent.