GPDPR - General Practice Data for Planning and Research

This practice is required to support vital health and care planning and research by sharing your pseudonymised data with NHS Digital.  For more information about this see the GP Practice Privacy Notice for General Practice Data for Planning and Research.

NHS Digital collected patient data from general practices using a service called the General Practice Extraction Service (GPES), which has operated for over 10 years and now needs to be replaced.  GPDPR is the successor to the GPES and it is a legal requirement for practices share patient’s data.  We can share that data for its primary intention – direct patient care – without further consent, because that consent is implied by being registered with the practice.  

UPDATE: The implementation date of the GP Data for Planning and Research (GPDPR) programme has been dropped and instead data collection will now only begin once certain criteria have been met.

This collection will start on 1 Sep 2021  (but if you wish to opt-out you must do so before 28 Aug)

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.  Whilst the data collected in other care settings such as hospitals is valuable in understanding and improving specific services, it is the patient data in general practice that helps the NHS to understand whether the health and care system as a whole is working for patients.  In addition to replacing what GPES already does, the General Practice Data for Planning and Research service will also help to support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including coronavirus (COVID-19) and enable many different areas of research

Although the availability of this data has the potential to greatly improve patient care, secondary use of the data (e.g. planning, research) may not be something that patients have thought about and patients do have a couple of “Opt Out” options available to them (as explained below). 

What data is shared?

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 1 July 2021, and was previously registered at a GP practice in England when the data collection started

We will share structured and coded data from GP medical records.  This excludes written notes (free text) such as the details of conversations with doctors and nurses, images, letters and documents, and coded data that is not needed due to its age - for example medication, referral and appointment data that is over 10 years old.

NHS Digital will not collect patients’ names or addresses.  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.

This 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 to data that could directly identify patients in certain circumstances, and reserves the right to de-pseudonymize where there is a valid legal reason.

How is this different from Care.data?

About 7 years ago a flawed scheme called Care.Data was introduced to perform similar data extractions from GP held patient records.  But the Department of Health at the time did not always act in good faith about Care.Data and after stating that patient data was “not for sale”, a draft price list was leaked to the press.  The scheme was eventually withdrawn.

NHS Digital say that GPDPR has significant safeguards in place to prevent anything similar from happening and the BMA and RCGP have therefore endorsed it (not least because of its huge power to do good).  They argue that research can identify what works and what doesn’t work, so that patients benefit from new therapies, technologies and better more personalised care. Others, including some GPs, still have concerns over the scope for which even aggregated data can be used by big tech firms and think this new scheme is as bad as Care.Data (if not worse).  For a more critical view please visit med.confidential.

How can I opt-out?

If you would prefer that your identifiable patient data is only shared for your own health care purposes, you can opt-out by registering a Type 1 Opt-out or a National Data Opt-out, or both.

These opt-outs are different and they are explained in more detail below. Your individual care will not be affected if you opt-out using either option (or both).

If you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with us by 28 August 2021.

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