Data Collection Opt Out

Posted by: Monifa - Posted on:

NHS have recently announced it is setting up a new primary care data collection service which will begin on the 1st July 2021. 

What is the GPDfPR?

The General Practice Data for Planning and Research data collection will help the NHS to improve health and care services for everyone.   

For example, patient data can help the NHS to:

  • Monitor the long-term safety and effectiveness of care.
  • Plan how to deliver better health and care services.
  • Prevent the spread of infectious diseases.
  • Identify new treatments and medicines through health research.  

What data will be collected?

The following data may be collected from GP medical records:

  • Data relating to any living patient registered at a GP practice in England when the collection started – this includes children and adults.
  • Data relating to any patient who died after 1 July 2021 and was previously registered at a GP practice in England when the data collection started. 

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 will 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. 

As above NHS Digital will not collect patients’ names or addresses or any other data that could directly identify patients (such as NHS Number, date of birth, full postcode). The data will be pseudonymised i.e., it will be replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.

More detail on the data collected including the legal basis is included on the Data Provision Notice issued to practices see: General Practice Data for Planning and Research – NHS Digital 

Can patients opt out?

Yes. 

This can be done by the practice or the patient can opt-out through the National Data Opt Out Service: https://digital.nhs.uk/services/national-data-opt-out at any time. 

Before you start, you need to:
• be aged 13 or older
• have access to your email or mobile phone
• have your NHS number or your postcode registered with your GP surgery – your NHS number can usually be found on either of the following –

  • Prescriptions
  • Test results
  • Hospital referral letters
  • Appointment letters

Ask your GP if you need help finding your NHS number.