Data sharing

This film from Understanding Patient Data explains the importance and benefits of sharing information for research and planning purposes.

Benefits of sharing data


  • preventing serious illness
  • developing new treatments
  • learning more about diseases.


  • planning NHS health services
  • making services safer
  • improving individual care.

Other films are available that focus on cancer, dementia, diabetes and heart attacks. Further case studies are available from their website.

We have worked with NHS England to produce a pocket guide and prompt card as resources to help you with questions from patients and citizens.

These address:

  • what the national data opt-out and new data protections regulations are
  • when the data opt-out applies
  • how data is kept secure
  • who might use health and care data.

Pocket guide for nursing, midwifery and care staff

Prompt card for nursing, midwifery and care staff

Further guidance, factsheets and policy documentation can be found on the NHS Digital website

Further information and support

For further information and support about the national data opt-out, see: National data opt-out.

You can also call: 0300 303 5678 with specific enquiries or email: (please include ‘National data opt out’ in the subject line).

General Data Protection Regulations

You can also contact the Information Governance Manager or Data Protection Officer at your organisation.

New data protection regulations are being introduced in the UK. The General Data Protection Regulation (GDPR) comes into effect in May and will apply to the healthcare sector in the UK.

Alongside this, a national data opt-out is being introduced across England to allow the public to opt out of confidential patient information being used for reasons beyond their individual care. Find out what you need to know about the national data opt-out and what it means for you.


Under the new regulations patients will have more control over their personal data and organisations that use personal data will increasingly be accountable for its lawful use and protection.

National data opt out

Following recommendations made by the National Data Guardian for health and care in England a new national data opt-out scheme has been developed. When an individual registers for a national data opt-out their confidential patient information will not be used for the purposes of planning and research. 

They can change their preference at any time. The national data opt-out will be available online and by telephone.

NHS Digital will be the first organisation to implement the national data opt-out. Not all organisations such as hospitals will be able to implement this immediately, but by 2020 it is expected that all health and care organisations will be following the policy.

Preparing yourself for questions

You can play an important role in helping patients understand the importance of information so that they can make an informed choice. 

Our initiative “Every nurse is an e-nurse” describes how effective sharing information is key to delivering health and social care now, and in the future.

Patient data saves lives: the bigger picture

Page last updated - 03/08/2019