Personal Demographics Service fair processing

The Personal Demographics Service (PDS) is the national electronic database of NHS patient details such as name, address, date of birth and NHS number (known as demographic information). 

NHS England operates PDS as part of the Spine under direction from the Secretary of State for Health and Social Care and is the Data Controller. PDS serves as the register of patients registered for, or otherwise in receipt of, health and care services commissioned by NHS organisations in England, Wales and the Isle of Man. They might actually live elsewhere, for example in Scotland, Ireland or the Channel Islands.

Within NHS England, staff at the PDS National Back Office (NBO) carry out a range of activities to manage and maintain the accuracy and quality of records on the PDS along with providing a set of record tracing services for specific defined purposes. A small number of other NHS England staff may access PDS records as and when required for the investigation of an incident or complaint.

Each individual record on the PDS contains identifiable data. This is to help care providers identify a patient and to facilitate communication with or about them.

The data items held include:

• NHS Number
• name
• date of birth
• gender
• GP practice
• address(es)
• contact details (such as telephone numbers and email addresses)

Where applicable, data is also held on people's immigration status to help care providers determine whether they are liable to be charged for some NHS services.

Data is also held, where applicable, on certain patient preferences such as nominated pharmacy and whether the record is marked as 'sensitive'.

No clinical data is held on PDS.

Further information about PDS, including the type of data held.

The data held on the PDS is collected by NHS care providers from patients or people acting on a patient's behalf. The NHS care providers collecting the data include GP practices and other primary care contractors (such as pharmacies), secondary and tertiary care providers, and child health, community, learning disability and mental health services. Primary Care Support England also creates and updates PDS records in the discharge of its responsibilities for maintaining patient lists for GP practices.

Some of the data held on the PDS is collected and provided by the Home Office. This is limited to details of visitors and migrants who have registered under the European Union Settlement Scheme, paid the Immigration Health Surcharge, or are part of a vulnerable cohort (such as asylum seekers and victims of trafficking). These details are used to update an existing record on PDS, where one already exists, or, to create a new PDS record, for individuals in advance of their registration with a GP practice or attendance for NHS care. In both cases, this applies only where they have (or have ever had) an address in England or Wales.

Where a new record is created, this data is initially provided by the individuals concerned as part of the EUSS or visa application process. Records which include EUSS may be provided to NHS Business Services Authority to enable verification of entitlement to NHS care under the terms of the Withdrawal Agreement between the UK and the EU and enacted in the European Union (Withdrawal Agreement) Act 2020. In the case of members of vulnerable cohorts their non-chargeable status, but not the reason, is recorded.

There is also provision for non-UK European Health Insurance Card (EHIC) data to be recorded on PDS to help identify cases where the patient is covered by the EHIC reciprocal healthcare arrangements.

Other updates to the PDS include:

• civil registration birth data provided by the Office for National Statistics
• civil registration death data provided by the General Register Office and the Office for National Statistics
• births and deaths data provided by the Isle of Man Government
• data on deaths registered in Scotland for patients who have received NHS care in England and therefore have a PDS record
• address, electronic and digital contact updates recorded by NHS care providers across the UK

At the request of NHS care providers, NBO staff create new records for people who are not already registered.

New records can also be created in certain cases where the resolution of data quality issues requires invalidation of existing records and in other cases such as adoption and gender reassignment where a new identity is established for the individual.

NBO staff also update records to correct errors identified by PDS users or by software checks, or where automated update processes have not succeeded and require manual checking.

Data is held on PDS to help care providers confirm the identity of patients; to link their care records within an organisation and between different organisations, and to communicate with patients. Access by individual staff to PDS data requires the use of a smartcard, while access via intermediary systems is subject to an assurance and approval frramework. Details of all access is logged and maintained for audit or other investigation purposes.

The key processes where PDS data may be accessed and used are as follows:

• registration (and de-registration) with a care provider, whether as a patient at a GP practice or as an in-patient, outpatient or day case with a provider of NHS services, generally via a care provider's own electronic patient record system (for example, GP practice clinical system or hospital Patient Administration System)
• registration with a GP practice involves processing of PDS data by the National Health Authority Information System (NHAIS) systems used by Primary Care Support England (PCSE) to manage GP practice lists, to check for previous details of a patient's GP registration
• checking by care providers for any updates to the details for a registered patient, either via a care provider's own system (for example, GP practice clinical system or hospital Patient Administration System) or by logging into the Demographics screens on the Summary Care Record application (SCRa) - this is also available to local authority social care services where they are working in partnership with NHS organisations to provide shared care for a patient
• checking by care providers for details of a patient's chargeable status in the case of visitors and migrants
• referral for care, typically a GP referral for secondary care, using the national eReferrals Service (eRS)
• prescribing medication using the national Electronic Prescriptions Service (EPS)
• creation and update of a patient's Summary Care Record (SCR)
• electronic transmission via the GP2GP service of a patient's medical records between the old and new GP practices when re-registering
• processing of patient application’s for a NHS login account
• other national services related to direct care

NHS England also processes PDS data to provide extracts of patient demographic data for the Secondary Uses Service (SUS), and the Master Patient Service (MPS) component of the Data Processing Service (DPS), all operated by NHS England.

A range of reports are also available to relevant organisations through Spine Demographics Reporting Service (SDRS) to support the management of NHS services, including some health screening services; many of these replace data extracts previously provided from the National Health Application and Infrastructure Services (NHAIS), which manages patient registrations with GP practices.

PDS data extracts may also be provided to external organisations for specific purposes subject to there being an appropriate legal basis and the relevant approval processes being followed. Disclosures of PDS data for secondary uses are recorded on the Data Release Register. 

There are several regional NHS data processing centres, known as Data Services for Commissioners Regional Offices (DSCROs) and staff in these offices may apply for access to PDS records. This is only allowed for specified purposes in connection with checking the validity of patient information and confirming responsibilities for commissioning of patient care.

NHS England also processes PDS data for validation and integrity checking purposes, identifying potential data quality issues to be investigated and resolved by NBO staff who will access individual records to identify issues and make corrections. For example, for letters sent back to us as ‘not known at this address / return to sender’ or invalid mobile numbers and email addresses, we remove this contact information from your PDS record. Data provided by the Home Office to NHS England may also be processed (including linkage to appropriate datasets as necessary) for the purposes of remedying and reporting on known errors with data collected and processed from the Home Office. Some less complex cases are also handled by staff at the National Service Desk operated by NHS England.

In addition to health and care purposes, where requested and where appropriate, the NBO may trace and provide administrative non-clinical information from the PDS to organisations and agencies with statutory responsibilities for specific public services. This is undertaken only where there is an applicable legal basis.

These tracing services are categorised under the following five headings:

• NHS Data Management - this includes batch tracing to confirm NHS Numbers and other details for patients receiving services from health and care providers
• Health and Care Management - this includes checking the currency of patient registrations; and, for adopted patients, facilitating the sharing of details regarding hereditary genetic conditions from their own GP to the GP of the traced birth relative
• Letter Forwarding - this is provided under NHS England’s statutory obligation to protect the welfare of an individual and is available to approved charities, only. No information about live individuals is provided by this function
• Death Registration Enquiries - this provides verification of a person’s death so that an adoptee or birth relative of an adoptee can avoid searching for family members who may be deceased. It is available to approved charities or adoption agencies, only
• Record tracing - this includes tracing for law enforcement purposes, including police services, National Crime Agency, court orders, HM Coroner and Criminal Cases Review Commission

Further information about these services is available.

Patients registered for NHS services are required to have a record on the PDS, and therefore cannot 'opt out' of the PDS. However, they can request that their record is marked 'Sensitive' which limits the detail that can be seen by anyone viewing their PDS record to name, NHS Number and DOB, with no contact or location details visible. Access can be restricted on request by, or on behalf of, any NHS patient who feels that their location details should not be accessible by the NHS. This is achieved through the application of the ‘Sensitive’ flag by NBO.

Where NHS England releases data for a secondary purpose (such as research and planning purposes), patients may choose for their identifiable data to not be released in this way. More information is available on the Opt out of sharing your health records page. Such releases are not made from PDS itself (and are not handled by the NBO team), but from the Data Access Request Service which has the capability to apply opt-outs.