The government has published a series of commitments in the form of a guarantee on how nationally held electronic health records will be used.
Health minister Lord Warner said that the new rules will ensure patients keep control over access to their health records in the delayed national database of patient records known as the NHS Care Records Service (CRS), now not due to be rolled out across England until 2006.
The new Care Record Guarantee makes 12 commitments to patients about their records. The guarantee covers people’s access to their own records, controls on others’ access, how access will be monitored and policed, options people have to further limit access, access in an emergency, and what happens when someone cannot make decisions for themselves.
Among the 12 pledges is that "Patients will be able to block off parts of their record to stop it being shared with anyone in the NHS, except in an emergency". In addition the guarantee says: "Individuals will even be able to stop their information being seen by anyone outside the organisation which created it".
Lord Warner said the new electronic record system has enormous potential benefits for patients. "However, we recognise that some people may have particular concerns about how their personal health information will be kept confidential in the new system."
He added that the rules would be backed up with tough security measures "to prevent unauthorised access to records", and ensure people have confidence in the new system. The 12 pledges will be guaranteed by the Secretary of State for Health.
The guarantee has been drawn up by the Care Record Development Board (CRDB), an advisory body of patients, members of the public, healthcare professionals, social workers and researchers. CRDB is chaired by Harry Cayton, the Department of Health’s National Director for Patients and the Public. The Board will review the guarantee in six months and update it as the NHS Care Records Service develops.
Director of policy for the Patients Association, Simon Williams, said he hoped the guarantee would set a ‘gold standard’ but the association remained concerned about the levels of access to medical records already allowed for government departments under the Health and Social Care Act.
“Patients should have a guarantee that the information they share with their GP or care giver is confidential,” he said.
He said veiled threats that care could compromised for people who declined to share their information in the new system didn’t wash. “The ultimate holder should be the patient, not some secret server that patients don’t have much information on.”
The NHS CRS is intended to connect more than 30,000 GPs and 270 acute, community and mental health NHS trusts in a single, secure national service. The service is intended to replace the existing variety of paper and computer-based record systems.
The development of NHS CRS is currently running about a year late, with the first generation record already meant to be available and in use. According to a booklet issued by the National Programme for IT last year called ‘Making IT Happen’, the first phase of NHS CRS was originally due to go live in June 2004, providing clinicians with the ability to view basic patient information and book out-patient appointments.
Phase two, originally meant to be delivered next month, will to provide more detailed patient records and allow electronic referrals, requests and orders.
In 2003 BT was awarded a £620m contract to deliver the national elements of NHS CRS, while four Local Service Providers in the five English regions will deliver the local elements of the service.