National Data Opt-Out- Organisation Readiness Checklist(DRAFT)

The National Data Opt-out applies to identifiable health and care information when it is used for purposes beyond an individual’s care and treatment. It does not affect existing opt-outs e.g. for local care record schemes or national services such as the Summary Care Record (SCR), which relate to individual care. Further information can be found here

Ref. / Criteria / Supporting Information / Guidance / Notes / Comments
The organisation has a named person to oversee the implementation of the national data opt-out.
The organisation has a plan in place for dealing with patientenquiries which has been agreed and communicated to relevant staff. / Look at current procedures for handling enquiries about the use of patient data and patients that ask to opt out or object to the use of their data. What if anything needs to change? / Prior to 25 May
Is your Information Governance lead/Caldicott Guardian aware of the national data opt-out and considering what action needs to be taken?
Do you have an organisational policy on handling enquiries about data use and opt-outs?
Do all your clinicians and staffwho deal with patients know what thepolicy is and/or what the procedures are for handling enquiries about data use?
The organisation has provided communications and/or training to members of staff who need to know about the national data opt-out. / Which members of staff need to be made aware of the national data opt-out? e.g. are there members of staff that do not have contact with patients that require only minimalinformation about the national data opt-out?
See web pages for information for the workforce including Factsheets, Questions & Answers and Policy Guidance. / Prior to 25 May
Have those clinicians/staff who deal with the public and deal with questions about data use been made aware of:
  • the national data opt-out choice which will be available to patients
  • the communications materials that are available for patients i.e. the poster on data usage and the handout about data use and the national data opt-out
  • the NHS.UK web page at: not available until 25 May) where patients can be directed to for more information about wider data uses and the national data opt-out, and from where they can set or change their national data opt-out selection
Workforce materials to help understanding of data uses and the national data opt-out can be found at:

(We plan for these materials to be available from 25April 2018)
Could information about the national data opt-out including copies of the workforce materials be copied on to your intranet site used by staff (if you have one) or crossreferences to the NHS Digital website at: be included?
It is important that the patient is directed to where they can find out more information about data sharing to allow them to make an informed choice – the NHS.uk web page at:
There is not an expectation that organisations must start upholding national data opt-outs from the 25 May2018. The solutions for upholding are in development and organisations will receive further communications about the requirements and timescales for upholding after 25 May.
The organisation has assessed and updated itsPrivacy Notice/Fair Processing Notice. / Privacy / Fair Processing Notices need to comply with new data protection legislation being introduced to comply with the General Data Protection Regulations (GDPR).
See Information Commissioner’s Office (ICO) guidance on privacy notices:

/ Being transparent and providing accessible information to individuals about how you will use their personal data is a key element of the new Data Protection legislation being introduced to meet the EU General Data Protection Regulations (GDPR). The most common way to provide this information is in something called a privacy notice.
The Information Governance Alliance (IGA) will also be developing some materials to support organisations in understanding compliance with GDPR and meeting the requirements of the new data protection legislation. The IGA guidance is expected to be published during March/April 2018 and can be found at:
The national data opt-out programme will also develop some recommended standard text that can be inserted into privacy notices that will talk about the wider uses of health and care data. It willdirect patients to the NHS.UK pages for more information and to understand the choice they have to opt-out.
The template privacy notice text can be found at:

(planned to be available on the website from 25 April 2018).
The organisation has an agreed approach on how, where and when to publicise information about the wider uses of patient data and the patient choice to set a national data opt-out. / Be clear on what to do with new communications materials for patients i.e. posters, handouts and screen texts being provided. / Posters and handouts for patients about data use in health and care will be delivered to organisations from mid May 2018.
Ensure whoever handles incoming deliveries is aware that these will be arriving and who they should inform when they arrive.
Screen display text for patient waiting room/reception area display screens will be available at:
25 May 2018
Put posters on display and make patient handouts available in reception areas from 25 May.
Add recommended screen display text to waiting room/reception area screens.
Instructions for the re-order process for additional posters/handouts will be available at with electronic copies which can be downloaded and printed.
Accessible and alternate language versions of the handout will also be available. Downloadable versions of these and instructions for patients to receive versions in the post will be available at:
The organisation has reviewed existing patient materials to check that information on wider data uses is correct and references have been included to signpost patients to the new materials and the national NHS.UK websitethat provides information on data uses and the national data opt-out. / Patient posters, handouts and website materials will need updating to guide patients towards the information available about data uses beyond their individual care and the national data opt-out which allows them to opt out of these uses. / Prior to 25 May 2018
Check existing poster displays and leaflet racks for materials that talk about data sharing and remove these if they are no longer appropriate in light of the national data opt-out. For example, are there still copies of ‘Better information means better care’ leaflets or posters available that were used at the time of the care.data public campaign? (Care.data was formally closed in 2016, with no data extractions having taken place)
Review your website for patient information on data sharing and opt-outs to check it is still relevant or needs to be updated to reflect the materials and information now available about wider data sharing purposes and the national data opt-out.
Check screen display messages, remove and change any messages about data use/data sharing policies that are no longer correct, such as any references tocare.data.
Are there any opt-out request forms in place? If so these need to be checked.
Registration forms should be updated to be ready for 25 May2018 to remove any out of date references and toincorporate the new information on data sharing andthe national data opt-out.
25 May 2018
Make sure updated materials are in place and information is includedon the website as appropriate.

NDOP checklist v0.6