This week we have received several calls and emails from patients about reported changes to how the NHS shares patient data.
We wanted to address the issue directly, especially as posts with inaccurate information are circulating on social media.
The issue centres on the National data opt-out. This allows patients to choose to not have their confidential patient information used for research and planning in the NHS.
Data Types and Uses
There are two types of information that are collected about patients:
- Something that identifies you – name, address, date of birth
- Something about your health care or treatment
When these two are joined together – for example, your name and any medication you take – it’s called confidential patient information.
Confidential information in the NHS can be used in 2 ways:
- Your individual care – a GP looking at your health records when considering future treatment, for example
- Research and planning – when data is collected to help the NHS plan and improve service, and scientific or academic institutions to research and develop cures for illnesses, for example, the response to covid-19.
It is this second purpose that patients can opt-out from.
No Deadline to Opt-Out
A lot of the misinformation centres around a deadline of 30th September 2021. Specifically, that if patients don’t opt out before that date, they will be unable to.
This is not true. There is no deadline or limit to opting out of sharing your information for research and planning. You can check or change your opt-out decision whenever you choose to do so.
To check or change your choice at nhs.uk/your-nhs-data-matters or by calling 0300 303 5678.
There is a 30th September deadline involved, but that is for health and care organisations to comply with the opt-out policy. It does not relate to or limit patients choices.
NHS Digital has produced a mythbusting page, correcting the misinformation that is out there.
The most important points are:
- You can opt-out at any time – there is no deadline
- We only share data to improve health and care
- Health and care data helps the NHS respond to emergencies like Covid-19
- There are protections in place to make sure your data is secure and safe
- The NHS does not sell health and care data
- Data is not shared with marketing or insurance companies
If you do not want your data shared outside of the practice, except for instance directly relating to your care, then you can complete a ‘Type 1 Opt-out form’ and email it to the practice at firstname.lastname@example.org. This will stop your data from being shared with NHS Digital for research and planning.
If you don’t want your confidential patient information to be shared by NHS Digital for purposes except your own care – either GP data, or other data held in the NHS, such as hospital data – you can register a National Data Opt-out.
It is essential patients have a clear and accurate understanding of how their confidential data is used in the NHS, and for what purposes. Further information can be found at nhs.uk/your-nhs-data-matters.