102021Jun

Data Sharing with NHS Digital

From 1st September 2021 data may be shared from the GP medical records about:

  • any living patient registered at a GP practice in England when the collection started – this includes children and adults
  • any patient who died after this data sharing started, and was previously registered at a GP practice in England when the data collection started

A patient’s name or where they live will not be shared. Any other data that could directly identify a patient, for example NHS number, General Practice Local Patient Number, full postcode and date of birth, is replaced with unique codes, this means that no one will be able to directly identify the patient in the data.

NHS Digital will be able to use software to convert the unique codes back to data that could directly identify a patient BUT ONLY in certain circumstances, and where there is a valid legal reason. Only NHS Digital can do this.

What can be shared:

  • data on sex, ethnicity and sexual orientation
  • clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about your physical, mental and sexual health
  • data about staff who have treated you

What is not shared:

  • your name and address (except 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 we are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender reassignment

Opting out

If you do not want information shared for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out or a National Data Opt-out, or both.

Opting out of sharing your confidential patient information:

https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/how-we-look-after-your-health-and-care-information/your-information-choices/opting-out-of-sharing-your-confidential-patient-information

National data opt-out:

https://digital.nhs.uk/services/national-data-opt-out