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National data opt-out

National data opt-out

Edit 05/05/2020 – Due to Covid-19, the compliance deadline for National Data Opt-Out has been extended to September 2020 and the text below has been edited to reflect this. We are in ongoing discussions with the NHS about what this means for Adult Social Care providers. 
Detailed guidance for care providers coming soon

From September 2020, all regulated social care providers in England will need to comply with the national data opt-out.

We will publish detailed guidance and useful resources on this website, and promote them widely through the sector.

Under the national data opt-out everyone who uses publicly-funded health and/or care services can stop health and care organisations from sharing their “confidential patient information” with other organisations if it is not about managing or delivering their own care. For example, if this information is used for research or planning purposes.

It won’t affect how you share information with other organisations to manage someone’s care and it won’t apply if you have explicit consent to share information or if the information is appropriately anonymised.

Most care providers do not share confidential patient information except for the purpose of managing or delivering care. The new opt-out should not have a major impact on you. But of course it is always important to treat people’s confidential information sensitively. So, if someone has opted out of sharing their data and you do use confidential patient information for planning or research purposes, it will be important to comply.

We are using the term “confidential patient information” as this is the term already used by the NHS where the opt-out is already in force. “Confidential patient information” applies to information about someone’s health or social care that can identify them.

What to do now:

If service users have any questions about the national data opt-out, or want to view or change their national data opt-out choice at any time, you can direct them to use the online service at www.nhs.uk/your-nhs-data-matters/ or to call 0300 3035678.

We will publish guidance and useful tools including:

  • essential guidance on the national data opt-out and what it means for social care providers
  • examples of when the opt-out applies and when it does not (e.g. in research projects, sharing data with funders etc)
  • standard copy and clauses that you can use in your privacy policies, consent forms, contracts etc
  • checklists to audit your compliance
  • guidance on using the MESH system (Message Exchange for Social Care and Health) to allow organisations to apply the opt-out.

Please come back to this page, register for our newsletter and follow us on twitter @DigiSocialCare for regular updates.

Last updated 5 May 2020

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