The ‘National Data Opt-out’ is introduced today, providing a facility for individuals to opt-out from the use of their data for research or planning purposes. This is provided in line with the recommendations of the National Data Guardian in her Review of Data Security, Consent and Opt-Outs. The service will initially be in beta, while we ensure the service design is optimal.
The NHS has launched the national data opt-out as part of the ‘Your Data Matters to the NHS’ campaign. This campaign informs the public that the strict rules about how health and care data can and cannot be used have been strengthened. The NHS is committed to keeping patient information safe and always being clear about how it is used.
The campaign will also let the public know that they can choose whether their confidential patient information is used for research and planning. A new website nhs.uk/your-nhs-data-matters has been launched which allows the public to find out more about how their data is used across health and care and to make this choice.
The NHS is communicating with patients and health and care professionals about the national data opt-out choice. The NHS is also working in partnership with the Information Commissioner’s Office (ICO) on a wider public facing national campaign about data rights alongside the introduction of the new data protection legislation (GDPR). The national data opt-out will be communicated to the public within this wider context so that people are aware of their choices.
The launch of the national data opt-out website will be followed in early June by a wider communications drive to provide more information to the public and patients about data use in the NHS and the choice they can make.
Downloadable versions of the patient poster and handouts are available online. Printed packs will start to be distributed to health and care organisations in June 2018.
For more information for health and care professionals visit: https://digital.nhs.uk/services/national-data-opt-out-programme
Type 2 opt-outs – letters to patients
Patients with an existing type 2 opt-out will receive a letter explaining that these have automatically been converted to national data opt-outs. These letters will go out in a phased way between June and July. GPs will still be able to set type 2 opt-outs until the end of September, but all newly registered type 2 opt-outs will automatically be converted to national data opt-outs and patients will be informed that this has happened.
The new online service will be launched in a ‘beta’ version. Health and care professionals and patient feedback is welcomed throughout this phase to help shape the fully operational service by October 2018. This phased introduction allows the new system to adapt and improve and offers staff in GP practices and other health and care settings time to absorb and adapt to the introduction over the first few months. The new service will become fully operational in October and type 2 opt-out codes will be retired so that they can no longer be recorded in GP practices.
Organisation readiness checklists
Our readiness checklists tell you everything you need to know about applying national data opt-outs in your organisation. We have published a checklist for GP practices and another for staff working in other health and care settings.
The Royal College of General Practitioners (RCGP) has published a toolkit on the national data opt-out to help primary care teams advise patients about their data sharing options, as part of their Patient Data Choices project. This and other resources are available online.
Watch the video: Understanding Patient Data
Understanding Patient Data has released a series of animations to help explain why it’s important to use data responsibly to improve health and care. Watch the introductory video ‘Patient data saves lives: The bigger picture’ and join the conversation on Twitter using #datasaveslives
Get in touch
If you have any comments or questions on any of the updates above or about the work of the national data opt-out programme, please contact us by emailing: email@example.com
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If you’ve been forwarded this newsletter by a colleague and don’t receive it directly sign up now to get the latest updates about the national data opt-out.
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Patients should visit nhs.uk/your-nhs-data-matters to set their opt-out choice.