UK doctors will be expected to spend time in every consultation discussing with patients what information about them is shared across NHS computers. This is one of the implications of a “care record guarantee” that the Department of Health published this week to reassure patients and professionals about the confidentiality of data held in systems created for the NHS's national programme for IT (information technology).
Clinical data from GPs' computers and other NHS systems are due to be shared across the new records service from the first half of 2006.
The guarantee makes 12 commitments to patients about their electronic records. These include granting individuals the right to stop any clinical data being seen by anyone outside the organisation in which it was created. However, the default will be that information will be shared unless patients specifically opt out. NHS patients will also not be able to prevent “demographic information” such as names, dates of birth, and NHS numbers being shared across the new care records “spine.”
NHS staff who break the guarantee's terms will face no new penalties but will face prosecution under the Data Protection Act as well as professional discipline, officials said this week.
The guarantee was agreed by the Care Record Development Board, an advisory body to Connecting for Health, the agency set up earlier this year to run the £6bn ($11bn; €9bn) national programme for IT. The board's chairman, Harry Cayton, said the document would clear up confusion about computerised records.
NHS patients will not be able to prevent a record of their treatment being kept. However, they will be able to decide with whom part or all of that record is shared. “What goes on that shared record is a matter for clinicians and patients to decide,” Mr Cayton said.
Dr Gillian Braunold, the programme's lead GP, said that she expects a brief conversation about data sharing to be part of each “quality consultation” between doctor and patient. “We can't have a single, one-off decision,” she said.
The guarantee will face scrutiny from healthcare professionals. Dr John Powell, chairman of the BMA's health information management committee, commended the health department for providing “at last some clarity.” He said the BMA welcomed the fact that patients had a choice over whether data are shared or not.
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