There have been articles in the news recently about how patient records maybe used and how patients can choose to opt out. It is worth reading the following information so you have an accurate picture of what the NHS uses data for.
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 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.
Type 1 Opt-out (opting out of NHS Digital collecting your data)
We will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice. More information about Type 1 Opt-outs is in our GP Data for Planning and Research Transparency Notice, including a form that you can complete and send to your GP practice.
This collection was started on 1 Sept 2021. Patient previously needed to register with us by 23 Aug 2021 if they did not want their data to be shared with NHS Digital.
If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.
If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.
National Data Opt-out (opting out of NHS Digital sharing your data)
We will collect data from GP medical records about patients who have registered a National Data Opt-out. The National Data Opt-out applies to identifiable patient data about your health, which is called confidential patient information.
NHS Digital won’t share any confidential patient information about you – this includes GP data, or other data we hold, such as hospital data – with other organisations, unless there is an exemption to this.
To find out more information and how to register a National Data Opt-Out, please read our GP Data for Planning and Research Transparency Notice.
You can also find out more about how patient information is used at:
https://www.nhs.uk/your-nhs-data-matters/ (which covers basic truths of whether your data is shared for research and planning)
https://www.hra.nhs.uk/information-about-patients/ (which covers health and care research)
and https://understandingpatientdata.org.uk/what-you-need-know (which covers how and why patient information is used, the safeguards and how decisions are made)
You can change your mind about your choice at any time.