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National Data Opt-out Programme

The national data opt-out

NHS Digital is developing a new system to support the national data opt-out which will give patients more control over how their personally identifiable data is used. The system will let patients exercise their right to make an informed choice about whether their personally identifiable data is only used for their individual care and treatment or also shared for research and planning purposes.

Setting the national data opt-out

Patients who decide they do not want to share their personally identifiable data for planning and research purposes will be able to set their national data opt-out preference online. We will provide a non-digital alternative for patients who can't or don't want to use an online system. The preference will be set once and apply to all data sharing for planning and research purposes.

Timescales

We are developing the system now. Patients will be able to use the system to state their national data opt-out preferences by March 2018. All health and care organisations will uphold these preferences by March 2020.

Information for health and care professionals

If you work in health and care, the introduction of the opt-out will mean you have two new areas of responsibility. You will need to advise patients and uphold their preferences.

Advising patients

Everyone working in health and care needs to be aware of the national data opt-out so that they can advise patients about the benefits of sharing data , the choices they can make and where they can find more information. This is so patients can make an informed decision about how their personally identifiable data will be used.

Upholding patient preferences

Health and care professionals who send patient identifiable data to other organisations for reasons other than a patient's individual care and treatment will need to know how and when to uphold a patient's preference.

Resources

We've prepared presentations that can be edited to be relevant to your local settings, to help you inform the health and care professionals you work with about the national data opt-out.

icon Pack A The NDG Review and Government Response Published November 2017 [3.21MB]

icon Pack B Taking the National Data Opt-out Forward Published November 2017 [3.43MB]

icon Pack C National Data Opt-out Approach Published November 2017 [3.26MB]

icon Pack D National Data Opt-out Operational Policy Published November 2017 [3.21MB]

icon Pack E1 Preparing for Implementation Published November 2017 [4.18MB]

We will provide more information and resources on these pages as the development of the new system progresses.

Join the national data opt-out mailing list

Fill in the national data opt out team contact form to be added to our mailing list.

Background to the national data opt-out

The National Data Guardian, Dame Fiona Caldicott, recommended a new opt-out model for data sharing in her Review of data security, consent and opt-outs in 2016. The aim is to allow patients to make an informed decision about how their personal data will be used. It is part of a vision to improve patients' trust and confidence in how data is looked after by the health and social care system. The National Opt-out ties in with other work on data security and making sure data is only used for the benefit of people's health and care.  

Have a question? Call us on 0300 303 5678 or contact enquiries@nhsdigital.nhs.uk.

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