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NHS patients have no specific legal right to prevent demographic data being stored on the Personal Demographics Service (PDS). NHS Digital has a legal responsibility to maintain a national register of NHS patients. This responsibility is fulfilled through the PDS which is the authoritative source of NHS demographic data. The NHS cannot comply with requests for data not to be held on the PDS.

The NHS is required to hold demographic data about its patients to:

• satisfy legal requirements for a register of patients under the care of each GP practice
• ensure that each patient presenting for care is ordinarily resident in the UK and, therefore, eligible for free care
• ensure that every patient has a unique identifier so that they can be readily identified by healthcare professionals and associated quickly and accurately with their correct medical details
• contact patients when they need to attend medical appointments or for other authorised purposes

Although demographic data must be held, there are cases where access to a patient’s details must be strictly controlled. Access to demographic records 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.

Access restriction is used to protect the location of patients who may be at risk.

The purpose of the restriction is to ensure that patient information that might imply a location is protected from viewing by any PDS user, other than authorised staff in the PDS National Back Office (NBO) with responsibility for managing restricted records. 

If a patient’s demographic record is restricted the patient will be unable to benefit from any of the national Spine systems that require location information, including e-Referral Service (e-RS), GP2GP and the Electronic Prescription Service (EPS). 

Other national services such as cancer screening, GP registration and payments will be possible, but the GP practice may need to forward correspondence to the patient on behalf of other NHS organisations who will not have access to contact details including address or telephone number. It also means that healthcare professionals will be unable to access the patient’s most up to date nationally held address and contact details.

Only the National Back Office (NBO) can restrict access to a patient’s demographic record. Requests should be made by patients via their GP practice or other agencies such as social services or police using an access restriction request form. 

Patients can request that access to their demographic record is restricted by contacting their GP and completing an access restriction request form.

The GP is not expected to make the final decision about whether access is restricted, this is the patient’s responsibility. The GP must, however, inform and guide the patient through the decision making process and stress that this should not be undertaken lightly.

Restricting access to a patient demographic record is not the same as opting out from sharing data for research and planning purposes. However, patients can review their data sharing choice at the point of setting or unsetting access restrictions on their demographic records. 

1. Advise and reassure the patient of the safeguards in place around the demographic data held in the PDS. 
2. Advise the patient of the potential clinical impact of their decision to restrict access. 
3. Ensure the patient understands and consents to the clinical implications of restricting access, and completes the access restriction request form.
4. Advise the patient that they have a choice whether to share data from their health records for research and planning purposes and, if appropriate, complete the opt-out form in accordance with the patient’s choice.
5. Send the form(s) to the National Back Office (NBO) following the instructions on the form(s). 
6. Retain a record of the request(s) in the patient’s medical record. 

The NBO will restrict access by setting the sensitive flag as a priority although this will be within 14 days at the latest.

Restricted access to a demographic record can be removed at the request of the patient via their GP practice or by agencies such as social services or police using an access restriction request form. The patient may also review and update their data sharing choice at the same time.

To remove the access restrictions the patient or agent must contact their GP who can authorise this request: 

1. Complete the access restriction request form(s).
2. Send the form(s) to the National Back Office (NBO) following the instructions on the form(s) 
3. Retain a record of the request(s) in the patient’s medical record. 

The NBO will remove the access restriction by lifting the sensitive flag within 14 days. 

You can find more information about managing access to your demographic record by contacting your GP. 

Your health records contain confidential patient information, which can be used to help with research and planning. If you would like to stop your information being used for these purposes, you can opt out of this yourself or on behalf of someone else.

If you would like more information about managing access to demographic records, please email: nhsdigital.nboteam4@nhs.net

Guidance and information for health and care staff about the national data opt-out.