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).

Data Controller

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 Digital operates PDS as part of the Spine under direction from the Secretary of State for Health 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 and Wales. Within NHS Digital, 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 Digital staff may access PDS records as and when required for the investigation of an incident or complaint.

Level of data

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) and 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'. The full list of data items held on the PDS, along with other information about PDS, can be found on the Demographics pages of the NHS Digital website. No clinical data is held on the PDS.

Collection

Much of 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 paid the Immigration Health Surcharge and these details are used to create a PDS record for individuals in advance of their registration with a GP practice or attendance for NHS care. This data is initially provided by the individuals concerned as part of the visa application process.

Other updates to the PDS include:

  • civil registration births and deaths data collected from the General Register Office.
  • births and deaths data collected from 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 updates recorded by from 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.

Purposes and sharing

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 framework. 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 (e.g. 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 (e.g. 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 by logging into the Demographics screens on the Summary Care Record application (SCRa)
  • 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.

NHS Digital also processes PDS data to provide extracts of patient demographic data for the Secondary Uses Service (SUS) and for the Medical Research Information Service (MRIS), both operated by NHS Digital. A range of reports is also available to relevant organisations through Spine Demographics Reporting Service (SDRS) to support the management of NHS services, including some health screening services. 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 are recorded on the Data Release Register

There are a number of 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 Digital 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. Some less complex cases are also handled by staff at the National Service Desk operated by NHS Digital.

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 four 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 & Care Management (this includes letter forwarding and checking currency of patient registrations)
  • Death Registration
  • Record tracing (this includes tracing for law enforcement purposes, including police services, National Crime Agency, Home Office Immigration, court orders and Criminal Cases Review Commission)

There is also a Letter Forwarding tracing service which NHS Digital provides under its statutory obligation to protect the welfare of an individual. No information about live individuals is provided by this function.

Further information regarding these services is available.

Opt-out/contact

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. This is normally done by the patient requesting that their GP contacts NBO to apply the 'Sensitive' flag.

Where NHS Digital releases data for a secondary purpose (such as medical research), patients may choose for their identifiable data to not be released in this way.  More information is available on this web page.  Such releases are not made from PDS itself (and are not handled by the NBO team), but from the MRIS service which has the capability to apply opt-outs.