General Practice Data for Planning and Research

BACK TO MAIN INDEX

We are aware that there has been a lot of information in the press about this system (not all of it correct!) and we would like to share with you the information that has been supplied to us about how this extract will work, what it will take and how you can opt-out if you so wish.

The extraction of data from GP systems is not a new occurrence and the data extracted from general practice has contributed significantly in the improvement of health and care services for many years.  NHS Digital is now working on a new framework for data extraction to continue this service for planning and research collection.

At this time NHS Digital are not setting a specific date for the collection of this data, instead they are working with various partners including the Royal College of General Practitioners (RCGP) and the British Medical Association (BMA) to ensure that any concerns are heard and dealt with.  The 1 September 2021 had previously been given as a start date for this project, however no data will be extracted until NHS Digital is sure that it has met all tests.

NHS Digital is also looking at patient opt-out and will be introducing three changes so that patients can opt out at any time meaning that the data will always reflect their preference, therefore;

  • Patients do not need to register a Type 1 opt-out by 1st September to ensure their GP data will not be uploaded;
  • NHS Digital will create the technical means to allow GP data that has previously been uploaded to the system via the GPDPR collection to be deleted when someone registers a Type 1 opt-out;
  • The plan to retire Type 1 opt-outs will be deferred for at least 12 months while the new arrangements are put in place and will not be implemented without consultation with the RCGP, the BMA and the National Data Guardian.

The Government has also stated that access to GP data will only be via a Trusted Research Environment (TRE) and never copied or shipped outside the NHS secure environment (except where individuals have consented to their data being accessed e.g. written consent for a research study).  This is intended to give a very high degree of confidence that their data will be safe, and their privacy protected.  Once the data is collected, it will only be used for the purposes of improving health and care.  Patient data is not for sale and will never be for sale.

An example of how patient data collected from GP surgery information is the vaccine rollout for Covid-19 – this could not have been achieved without GP input.  Also the discovery that the steroid Dexamethasone could save the lives of one third of the most vulnerable patients with COVID-19 – those on ventilators - could not have been made without patient data from GP practices in England. That insight has gone on to save a million lives around the globe. That is why this programme is so important.

We are waiting on further communications about the extract and will keep you informed of any information we receive as soon as we receive it.

For further information please see NHS Digital leaflet, your data matters or this video

Published: Aug 3, 2021