Media coverage has highlighted a forthcoming patient data extraction leading to the extraction being delayed until further information and public consultation had been completed. Below is information that has been provided to healthcare providers by the NHS giving an overview of how patient data held by their GP practice can be used, what data is collected, what data isn’t collected and how patients can opt-out if they would prefer their data not to be used in this way.
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.
NHS Digital will collect:
- Data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health
- Data on sex, ethnicity, and sexual orientation
- Data about staff who have treated patients
NHS Digital does NOT collect:
- Name and address (except for postcode, protected in a 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
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 don’t want your identifiable patient data to be shared for purposes except for your own care, you can register an-opt out with your GP practice by 1 September 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.
Websites for further information:
Your NHS data matters
Collecting GP data – advice for the public
General Practice Data for Planning and Research: NHS Digital Transparency Notice
General Practice Data for Planning and Research (GPDPR)
Your data matters – British Sign Language