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Restricting access to a patient’s demographic record
Find out if patients must have a national demographic record
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.
What restricting access means
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.
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.
Who can restrict access
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.
How patients can request that access to their demographic record is restricted
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.
The difference between restricting access and opting-out
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.
Send the form(s) to the National Back Office (NBO) following the instructions on the form(s).
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.
How patients can have the restriction removed
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: