National data opt-out system for patients

National data opt-out system for patients

NHS Digital’s national data opt-out system offers patients the opportunity to make an informed choice about whether they wish for their personal identifiable information to be used for research and planning purposes. The national data opt-out does not apply to, or affect the necessary usages of data for the patient’s individual care and treatment.

What is the opt-out?

The opt-out system allows patients to directly express an opt-out preference of their personal identifiable information being used for:

  • research purposes – such as finding ways to improve treatments; and
  • planning purposes – such as data use to improve delivery of health services.

See table below to see what the opt-out system and principles relate to:

What do the national data opt-out system and principles apply to?
Data shared for planning and research purposes

  • Research – finding ways to improve treatments and identify causes of and cures for illnesses
  • Planning – to improve and enable the efficient and safe provision of health and care services

This identifies patients personally

Applies to opt-out

Data shared for an individual’s care & treatment

E.g. where data is shared between the health and care professionals in a pharmacy and in a GP practice

This identifies patients personally

exempt from opt-out

Legal requirement / public interest / consent

E.g.  There is a mandatory legal requirement such as a court order, to protect the greater interests of the public or there is explicit consent

This identifies patients personally

exempt from opt-out

Data is anonymised

The data shared is anonymised e.g. compliant with the Information Commissioners Office (ICO) Anonymisation: managing data protection risk code of practice

This does not identify patients personally

exempt from opt-out

When did it apply from?

Patients and the public have been able to use the system since 2018. NHS Digital explained that: “All health and care organisations will be required to uphold patient and public choices by March 2020.”

How can patients opt-out or learn more about their options?

Patients can find out more information and express the opt-out preference using the:

Pharmacy contractors are advised to signpost patients that ask about opt-out to the patient-facing website where patients will be able to read more information or call NHS Digital.

Other patient communications: A pack was posted to many pharmacies during summer 2018. It included a number of posters and handouts to give information to patients. Contractors may be able to order a limited number of additional copies of the NHS poster at no cost using the Department of Health and Social Care Publications order line at (using that link, select ‘Your Data Matters to the NHS’ from the campaign box on the right) – whilst stocks last. Pharmacy teams were advised by us to make use of the materials provided and signpost patients. NHS Digital also have made available other patient resources including posters on their website.

Why was this introduced?

NHS Digital have made this data option system available as recommended in ‘Your Data, Better Security, Better Choice, Better Care’ and within the Government’s response to the National Data Guardian’s ‘Review of Data Security, Consent and opt-outs’.

What is involved with the pharmacy contractor’s consideration of the national data opt-out system and principles?

NHS Digital have communicated: “Patients and the public are able to use the system from 2018. All health and care organisations will be required to uphold patient and public choices by March 2020″.

It may be noted community pharmacy contractors:

  • will not need to access information about which patients have or have not added themselves to the NHS Digital opt-out system; and
  • use of patient-identifiable data by contractors does not involve processing of such data for planning and research purposes (instead the reasoning may relate to individual patient’s care and treatment etc)

Contractors should now have privacy notices available for their patients and it may be helpful to refer to the National Data Opt-Out within those, if not already. PSNC’s suggested template privacy notice template is available here [Template G: “Tell people about your processes: the Privacy Notice” within pharmacy GDPR workbook part 3, page 19] which already includes reference to the opt-out system for patients.

Further information

This webpage will continue to be updated with further developments relevant for pharmacy contractors. Also, read more at:


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