Supporting patient choice: the national data opt-out six months on

In May 2018, the NHS launched the ‘Your Data Matters to the NHS’ campaign which promoted a new way for the public to opt out of the use of their personal data for research or planning purposes in England. This was in line with the National Data Guardian’s recommendations in Review of Data Security, Consent and Opt-Outs. The national data opt-out does not apply to confidential patient information when it is used for individual care, for example, for direct treatment and care. 

The campaign informs individuals about the different ways in which their confidential patient information is used, for example, for individual care, planning and research, the benefits of data sharing, and how to manage their choice about the use of their data.  

To support this work, the RCGP has been working with NHS Digital to deliver the Patient Data Choices project, which provides information and resources on national data output to support primary care teams. The project:

  • Helps to raise awareness of patient choice in primary care teams so they can respond to questions accurately and confidently
  • Provides information to primary carer teams so that they understand their responsibilities to uphold the national data opt-out. All health and social care organisations will be expected to uphold the national data opt-out by March 2020. 

We have produced a Patient Data Choices toolkit, which contains detailed information on all elements of the national data opt-out, including a succinct key point summary. NHS Digital has produced several information resources and these are sign-posted to from the toolkit. 

Over the past 12 months, several events and webinars have been delivered on the out-out. Webinars and slide sets are also available from the toolkit; topics cover a general overview, upholding the opt-out, the role of practice Caldicott Guardians and how the national data opt-out affects researcher and commissioners. 

Two 30-minute eLearning modules have also been produced for those who prefer a more structured approach to learning. The modules cover an introduction to the national data opt-out and how to uphold it as a practice.

We encourage GPs to look at the information and cascade them to your colleagues.

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