Skip to main content

Guidance for all health and care staff


Guidance, factsheets and policy documentation on the national data opt-out.

NHS factsheets for health and care staff

We have produced a series of factsheets about data uses and the national data opt-out, which is presented to the public as 'Your Data Matters to the NHS'.

Factsheet 1A – Data use and patient choice

This factsheet provides information on how data is used by health and care organisations and why it is provided to other organisations.

Factsheet 1B – Types of data used and legal protection in place

This factsheet sets out what types of data are used and the legal protections in place.

Factsheet 2 – When the national data opt-out applies

This factsheet provides the criteria and supporting information to understand when a national data opt-out does or does not apply.

Factsheet 3 – What data and organisations the national data opt-out applies to

This factsheet sets out what data and organisations the national data opt-out will apply to.

Factsheet 4 – How the national data opt-out is applied

This factsheet provides the rules to understand how the national data opt-out is applied.

Factsheet 5 – Setting a national data opt-out

This factsheet provides guidance on who can set a national data opt-out and how it applies when other opt-outs exist.

Factsheet 6 – How the national data opt-out fits with data protection legislation

This factsheet sets out how the national data opt-out sits alongside data protection legislation

National data opt-out operational policy guidance

The national data opt-out operational policy guidance provides the legal definitions and policy behind the national data opt-out.


View our checklists, for a reminder of the actions to take.

Readiness checklist - GP practices

Readiness checklist -  other organisations

Compliance with the national data opt-out policy

All health and care organisations in England will be expected to comply with the national data opt-out policy by March 2020. Find out what you need to do for your organisation to comply.

Webinars about the national data opt-out

We recorded a webinar in July 2018 with experts from the national data opt-out programme who provided updates from each workstream. 

View the national data opt-out webinar videos

You can also view the Implementation team - Organisational Readiness Webinar slides, used in July 2018.

Guidance for nursing, midwifery and care staff

These resources are designed to help nursing, midwifery and care staff support their patients. Nursing, midwifery and care staff have a key role in helping individuals understand the importance of information so that they can always be supported to make an informed choice about how confidential patient information is used for research and planning.

Pocket guide for nursing, midwifery and care staff

Prompt card for nursing, midwifery and care staff

Guidance for detained and secure estates

Patients in the detained and secure estate who want to register a national data opt-out need a healthcare professional to fill in a proxy form on their behalf. Read the information and guidance on proxy forms about who can complete it and how it should be filled in. Patient communication materials were sent to each site during November 2018.

The national data opt-out information is held centrally on the NHS Spine and will not be updated in the SystmOne prison module, so you will not see the national data opt-out in the patient’s record.

The national data opt-out has replaced the previous type 2 opt-out codes. Any type 2 opt-outs submitted to NHS Digital up to and including 2 November 2018 have been automatically converted to national data opt-outs.

Type 2 opt-out codes can no longer be recorded in SystmOne. If you have any type 2 opt-out codes recorded that have not been submitted to NHS Digital then please use the Non-Digital Detained and Secure Estate Proxy National Data Opt-out Form to submit these as national data opt-out requests.

We sent a letter to Heads of Healthcare and SEFT account holders in November 2018 with more information about the national data opt-out and the transition from type 2 opt-outs.

Guidance for helpline staff

Guidance for helplines

Helplines are highly effective at engaging with, and providing support to, patients who may find it challenging to access mainstream healthcare provision. This printable guide explains the national data opt-out in more detail, and provides information for call handlers on where to signpost callers for more information.

Guidance for voluntary sector staff

Guidance for the voluntary sector

We know that local patient groups, voluntary sector organisations, faith groups and other local forums are well placed to have conversations with their members and networks, including about sharing of health and care information. This printable guide is designed to inform voluntary and community sector partners about the national data opt-out. 

National data opt-out equality impact assessment

The national data opt-out equality impact assessment describes the research and engagement that has been conducted, the impacts that have been identified and the mitigating actions that have been put into place.

National data opt-out data protection impact assessment

National data opt-out data protection impact assessment

As part of the development of the national data opt-out, we have undertaken a data protection impact assessment (DPIA). The DPIA is a process to systematically analyse, identify and minimise the data protection risks associated with a new project or service. The DPIA for the national data opt-out reflects the specific privacy risks and impacts of the national data opt-out. 

Last edited: 18 December 2018 4:08 pm