NHS Digital Data Sharing

 

The current NHS Digital (NHSD) extract of GP data for Research purposes (known as the GPDPR) has been delayed due to NHSD wishing to review the way in which this data will be collected, to conduct more public involvement and information about the plans and change the way in which patients can opt out of the extract of their GP data.

Currently the only way to opt out is to complete a Type 1 opt out form and return this to the practice by the 1st September.  However, this extract will not be taken until the NHSD have changed the way it will take the data and respect the patient’s choice for using their data.  NHSD are introducing the following changes to the opt out process which will mean that patients will be able to change their opt-out status at any time::-

  • Patients do not need to register a Type 1 opt-out by 1st September to ensure their GP data will not be uploaded. 
  • NHS Digital will create the technical means to allow GP data that has previously been uploaded to the system via the GPDPR collection to be deleted when someone registers a Type 1 opt-out.
  • The plan to retire Type 1 opt-outs will be deferred for at least 12 months while we get the new arrangements up and running and will not be implemented without consultation with the RCGP, the BMA and the National Data Guardian. 

This means that you can opt out at any time in the future and NHSD will delete data that they already have taken for research purposes, the deadline of the 01/09/2021 has been delayed until a new system of opt out is developed.  Hopefully, this will be a simple centralised approach via the NHS app or NHS website to avoid paper form and administration work for your GP.

We will update you when we know more about the NHSD plans to change how you can control who has access to your data.

Data Sharing

NHS Digital looks after data in England and has responsibility for standardising, collecting, analysing, publishing and sharing data and information from across the health and social care system, including general practice

Patient data collected from general practice is needed to support a wide variety of research and analysis to help run and improve health and care services. Examples are;

- research on the long term impact of corona virus

- how people from different ethnicities access healthcare and outcomes from different groups compare to the rest of the population so we can make necessary changes

- previous research has shown there is no link between measles/mumps/rubella with the development of autism.

What Isn’t Shared

Patient’s name, address, NHS Number, full post codes, date of birth, phone number, any written notes on the patient record, and written conversations between GP/Nurse and the patient, photo’s, letters, documents – patients cannot be identified by any data shared.

What Is Shared

Data about diagnoses, symptoms, test results, medications, allergies, gender, ethnicity etc

How A Patient Opts Out From GP Data Being Collected

Patients need to register a Type 1 Opt Out at any time, once this happens their data sharing will stop. Options for patients are;

This can be done on-line at https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/

  Or from within the NHS APP;

-Go to Your health

- Select Choose if data from your health and care records is shared for planning and research.

- Select Make your choice.

 - Review the information on the page, then select Start now.

- View your preference, then select Change if you want to change it.

- Update your choice, then select Submit.

 Or filling in the Opt Out form and emailing or handing in to your GP Practice

 

 Type 1 Opt Out Form Word

Type 1 Opt Out Form PDF

 



 
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