Information about your health and care helps the NHS to improve your individual care, speed up diagnosis, plan your local services and research new treatments.
NHS Digital has a legal responsibility to collect data about NHS and social care services.
The NHS cannot analyse all information on its own, so we safely and securely share some with researchers, analysts and organisations who are experts in making sense of complex information. We only share what’s needed for each piece of research, and wherever possible, information is removed so that you cannot be identified.
You can choose not to have information about you shared or used for any purpose beyond providing your own treatment or care.
The current NHS Digital (NHSD) extract of GP data for Research purposes (known as the GPDPR) has been delayed due to NHSD wishing to review the way in which this data will be collected, to conduct more public involvement and information about the plans and change the way in which patients can opt out of the extract of their GP data.
Currently the only way to opt out is to complete a Type 1 opt out form and return this to the practice. There was a deadline of the 1st September but this deadline has been removed (see below):
However, this extract will not be taken until the NHSD have changed the way it will take the data and respect the patient’s choice for using their data. NHSD are introducing the following changes to the opt outprocess which will mean that patients will be able to change their opt-out status at any time::-
- 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 we get the new arrangements up and running and will not be implemented without consultation with the RCGP, the BMA and the National Data Guardian.
This means that you can opt out at any time in the future and NHSD will delete data that they already have taken for research purposes, the deadline of the 01/09/2020 has been delayed until a new system of opt out is developed. Hopefully, this will be a simple centralised approach via the NHS app or NHS website to avoid paper form and administration work for your GP.
We will update you when we know more about the NHSD plans to change how you can control who has access to your data.