GPDPR - Type1 Opt Out, NHS National Opt Out, "NHS Data Grab" explained
Credits for the some content of this page: NHS Digital, Dr Neil Bhatia, MedConfidential, Dr Gandalf and UseMyData
Update 27/8/2021 - the GPDPR programme is on-hold
The General Practice Data for Planning and Research [GPDPR] data extract by NHS Digital from GP Practices across England will help the NHS to improve health and care services for everyone, by collecting patient data and holding it in a central national database.
This is an upgrade to an existing similar process called GPES – General Practice Extract Service, this new data collection will be more efficient, effective, and much more frequent.
For example, patient data held in this new national database 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
If you would not like your GP data shared with NHS Digital using the GPDPR, you need to register an Type1 Opt Out with your GP Practice, by sending in a paper form.
In this article we explain:
How the GPDPR opt outs work
What you might want to consider before making a decision to remain in, or opt out
How to opt out of sharing your data - GP Data Planning and Research extract - GPDPR
If you don’t want your identifiable patient data to be shared for purposes except for your own care, you can opt out by registering either a Type 1 Opt out form, or a NHS 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.
What is a Type1 Opt Out, how do I opt out of GPDPR and where's the form?
If you live in England and want to stop your GP data leaving your GP practice for purposes other than your direct care, you can do so by filling in and giving or posting this form to your GP Practice.
Also, please note that NHS Digital have been planning to retire the Type1 Opt Out, and combine it with the NHS National Data Opt Out for some time. So if you do decide to use this opt out, keep an eye out for letters from your GP, or NHS-D, about any changes being made to the Type1 Opt Out.
You can download the form in .PDF, .ODT or MS Word format by pressing these buttons.
What is the NHS National Opt Out?
Warning: it can take NHS Digital up to 21 days to process the NHS National Data Opt Out.
If you want to stop your non-GP data, such as hospital or clinic treatments, being used for purposes other than your direct care (e.g. for research and planning), or, your identifiable GP and other NHS data being shared by NHS Digital, you must use this process:
If it’s just for yourself, use NHS Digital’s online NHS National Data Opt Out process – this process only works for individuals aged 13 and over. Or, you can use the NHS App to set a NHS National Opt Out.
If you have children under 13, you need to fill in this form [PDF] and e-mail or post it back to NHS Digital – this form works for both you and your children.
If you have an adult dependant for whom you have legal responsibility, you must use this form [PDF] and send it back to NHS Digital on their behalf.
There is no deadline for using the NHS National Data Opt Out, but the sooner you do it, the sooner it takes effect.
The NHS National Data Opt Out will not stop your GP data being extracted by the new GPDPR data collection.
N.B. If you opted out of care.data in 2014, then you shouldn’t need to do anything now. As most people did both a ‘Type 1’ Opt Out and what is now a NHS National Data Opt Out, you can check your NHS Digital opt out status online at NHS Digital. Your GP opt out status will probably match the opt out status shown there; although if you’re not sure, giving a ‘Type 1’ form to your GP Practice now doesn’t have any risk.
If you are not sure whether to opt out or not, views for and against opting out are presented below
These videos explain the background to GPDPR
GPDPR - Basics
GPDPR and control of your medical data explained in 1 min
GPDPR, the NHS data opt out and how to control your medical data
NHS App - Change Your Data Sharing Choices
How the Type 1 Opt Out Form and NHS National Data Opt Out can work together
The diagram below shows how the two types of Opt Outs can work in three scenarios:
Type 1 Opt Out Only - this shows your GP Data being blocked from being shared with NHS Digital. But NHS Digital are still able to share your other medical records, in all these formats:
NHS National Data Opt Out Only - in this scenario, NHS Digital are blocked from sharing your clear medical data collected from your GP and all other NHS events, but can still share anonymised and pseudonymised data [which, as we discussed at the start, can be re-identified].
Both Type1 and NHS National Data Opt Out - in this third scenario, NHS Digital never get your GP data, but can still share your anonymised or pseudonymised records from other parts of the NHS.
Diagram used with kind permission of Dr Neil Bhatia
The pluses and minuses of staying in, or opting out of GPDPR
Below we discuss some pluses and minuses around GPDPR, with links to more in-depth articles and a selection of videos.
First, some views of organisations broadly in favour of data sharing:
• NHS Digital
• Understanding Patient Data
NHS DIGITAL - How sharing patient data with NHS Digital helps the NHS and you
The NHS needs data about the patients it treats to plan and deliver its services, and to ensure that the care and treatment provided is safe and effective. For more information, please click this link. Please come back here for the opt out if you need them. https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research