Patient NHS Data: Update to our Patient Groups – Aug 21

Dear PPG member,

A number of Patient Participation Group (PPGs) members have raised some questions regarding patient information for planning and research purposes. 

During the pandemic GP practices across England were asked to support coronavirus (COVID-19) planning and research by sharing patient data with NHS Digital. NHS Digital is the organisation that uses information and technology to help improve health and care.

The vaccine rollout for Covid-19 could not have been achieved without patient data. For example, the discovery of the steroid Dexamethasone could save the lives of one third of the most vulnerable patients with Covid-19; those on ventilators – could not have been made without patient data from GP practices in England.  That insight went on to save a million lives around the world.

However, patients rightly trust their GP to safeguard their data, which they take very seriously. So, NHS Digital is making improvements to the way that data is collected from general practices going forward.

Some people may have heard that 1st September was a cut-off point for patients to opt- out of data being shared. This is not the case. A specific start date for collecting data will not be set until a number of things have happened, including: 

  • Patients being made more aware of the scheme through a campaign of engagement and communications.  Further conversations will also take place with medical bodies including the British Medical Association.
  • There is the ability to delete data, if patients choose to opt-out of sharing their GP data with NHS Digital, even if this is after their data has been uploaded.  If data has been previously uploaded, going forward this will be deleted, if someone at any point wants to opt out.
  • The backlog of opt-outs has been fully cleared.
  • The right environment has been created and implemented in NHS Digital regarding research.

This commitment has been made to provide confidence to patients that they will have the ability to opt-in or opt-out of the system. 

When we receive further information, particularly relating to the campaign of engagement and communications, we will update all our PPG members.

Kind regards

Sue Venables

Head of Engagement and Insights




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