Restricting access to a patient’s demographic record

Patients have no specific legal right to stop the NHS from storing demographic data. NHS England has a legal responsibility to maintain a national register of NHS patients. This responsibility is fulfilled through the Personal Demographics Service (PDS). The NHS cannot follow requests to stop data from being held on PDS.

The NHS needs to hold demographic data about its patients to:

• meet legal requirements for a register of patients under the care of each GP practice
• ensure each patient presenting for care normally lives in the UK, and so is eligible for free care
• ensure every patient can be identified by healthcare professionals
• contact patients when they need to attend medical appointments or for other purposes

PDS must hold demographic data, but there are cases when access to a patient’s details must be strictly controlled. Any NHS patient can request that their demographic records are restricted.

PDS uses access restriction to protect the location of patients who may be at risk. It ensures information like the patient’s address cannot be easily accessed by healthcare professionals. A healthcare professional can still look up restricted patient’s NHS number if they have their name and date of birth.

If a patient’s demographic record is restricted the patient cannot use some NHS services that need location information. These include e-Referral Service (e-RS), GP2GP, Summary Care Records (SCR) and the Electronic Prescription Service (EPS). It may also stop access to services that use NHS login.

In some cases, location information is available to national NHS services when it is seen to be in the best interest of the patient. This includes services such as cancer screening, GP registration and payments. Where appropriate, these services will continue to send letters or text messages to the patient.

GP practices may use patients' contact information to forward letters for other organisations delivering NHS services.

Only the National Back Office (NBO) can restrict access to a patient’s demographic record. Patients should make a request via their GP practice or other agencies such as social services or police. They can use an access restriction request form. 

Patients can request that access to their record is restricted. They can do this 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. The GP must inform and guide the patient through the decision-making process.

Restricting access is not the same as opting out from sharing data for research and planning purposes. 

1. Tell the patient about the safeguards in place around the demographic data held in the PDS. 
2. Tell the patient of the potential clinical impact of their decision to restrict access. 
3. Ensure the patient consents to the clinical implications of restricting access
4. Ensure the patient completes the access restriction request form.
5. Tell the patient that they have a choice whether to share data from their health records for research and planning purposes.
6. Send the form(s) to the National Back Office (NBO) following the instructions on the form(s). 
7. Keep 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 10 working days.

PDS can remove restricted access if it is requested by:

• the patient
• the patient's GP practice
• agencies such as social services or police

They can use an access restriction request form to do this. 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 in the following way: 

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

The NBO will remove the access restriction by lifting the sensitive flag within 10 working 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: [email protected]