Patient consent and dissent within NHS Care Records Service

It is important that patients, doctors and their staff understand for what patients can and cannot express their consent for record sharing.

The NHS Care Record Service has a number of components:

• PDS (the Personal Demographics Service) stores names, ages, addresses and registered GP of all NHS patients. This data has been held by the NHS for many years in central computer systems and there is no option to opt-out of this service.
• PSIS (the Personal Spine Information Service) stores details of patients’ clinical records and medication. This data has only previously been held on local GP and hospital systems, not centrally. Patients can opt out of this service, but they need to understand that this information is not then available to other healthcare professionals when they are seen, for instance, in an Accident and Emergency department.
• If the patient refuses consent for their records to be shared and opts not to have a SCR (i.e. not shared and not stored on PSIS), then a blank record is created on PSIS to demonstrate that they have opted out. Although, if required, the patient can refuse consent for their records to be shared but still have a SCR on PSIS (i.e. stored but not shared) which is only initially accessible to their GP practice. With further patient consent decided at the time of each further out of practice consultation the SCR can be accessed by other healthcare professionals.
• The NHS Referral Service manages all aspects of GP referral letters and appointments electronically. If a patient opts out of sharing the SCR, they are not exempt from being referred through the NHS Referral Service.
• Electronic Prescription Service (EPS)) receives details of prescriptions from GPs for pharmacists to draw down and dispense medication items. It is not currently possible to withhold consent for this data to be shared, but it is only shared with the pharmacist who dispense the medication and the Prescription Pricing Division of the NHS Business Services Authority. If patients do not want their prescriptions transmitted electronically, then GPs can continue to print them on paper.
• Vision 3 supports patients refusing consent for their records to be shared on PSIS. There is an explicit flag that can be set and transmitted to PDS to mark their records as refused consent to share.