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 will 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 will allow 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:

What does the national data opt-out 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 will it apply?

NHS Digital have explained that they are developing the system now. NHS Digital say that: “Patients and the public will be able to use the system from 25th May 2018. All health and care organisations will be required to uphold patient and public choices by March 2020. The national data opt-out will be introduced alongside the new data protection legislation.”

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

From 25th May 2018, patients will be able to find more information and express the opt-out preference using the:

  • nhs.uk website portal; or
  • NHS Digital contact centre phoneline number.

Pharmacy contractors are advised to signpost patients that ask about opt-out to the patient-facing website once this goes live: nhs.uk/mydatachoice (patient-facing web link due to go live by 25th May 2018) where patients will soon be able to read more information or call NHS Digital.

Why is this being introduced?

NHS Digital have made this opt-out 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’.

 Further information

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

 



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