Your Data Matters - Data Sharing with NHS Digital

The date of 1st September for the GPDPR extraction is now on hold, patients can continue to request the Type 1 Opt-out to prevent their data being extracted in the future, there is no closing date for this.


On the 12th May, NHS Digital issued a Data Provision Notice to GPs to enable GPDPR to begin from 1 July 2021 with the aim of giving planners and researchers faster access to pseudonymised patient information.

Concerns have been raised about the timeframes and whether enough time has been given to inform patients about the changes. Therefore, NHS Digital has said that to ensure that more time is allocated to speak with patients, doctors, health charities and others to strengthen the plan even further, the collection of GP data for planning and research in England would be deferred from 1 July to 1 September 2021.

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What is the GPDPR? or the National Data Opt-Out?

Information about your health and care helps the NHS to improve your individual care, speed up diagnosis, plan your local services and research new treatments.

The NHS cannot analyse all information on its own, so NHS Digital safely and securely share some with researchers, analysts and organisations who are experts in making sense of complex information.


Under the improved scheme, the NHS would collect data about:

✅ your sex, ethnicity and sexual orientation

✅ clinical codes and data which would include diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals and recalls, and appointments, including information about your physical, mental and sexual health

✅ staff who have treated you


The NHS will not collect:

❌ your name and address (except for your postcode in unique coded form)

❌ written notes (free text), such as the details of conversations with doctors and nurses

❌ images, letters and documents

❌ coded data that is not needed due to its age – for example medication, referral and appointment data that is over 10 years old

❌ coded data that GPs are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender re-assignment

The NHS will not:

❌ Sell your data

❌ Use your data for marketing, market research or advertising


Any other data that could directly identify patients (such as NHS number, date of birth, full postcode) is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital. 

The process is called pseudonymisation and means that patients will not be identified directly in the data. NHS Digital will be able to use the software to convert the unique codes back that could directly identify patients in certain circumstances, and where there is a valid reason. 



If you do not want your identifiable patient data to be shared outside of your GP practice for purposes except for your own care, you can register an opt-out with your GP practice by 23 June 2021 which can be found in the links below. You can download the opt out form by clicking here.

Patients without internet access can call 0300 303 5678.

The decision to opt-out is down to each individual patient and we like to confirm that your opt-out choices will not affect the care you receive from your surgery.

For more information and the opt-out forms you may need, please visit:

 



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