A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.
National Data Opt-out(1st March 2018)
The latest newsletter from NHS Digital confirms that the National Data Opt-out has been pushed back from March to May. The Opt-out will now be aligned with the implementation date for the General Data Protection Regulation (GDPR). The Opt-out will be in the form of one question, the wording of which is currently being tested by NHS England, with a communications programme to follow.
This is a link to a PDF copy of the Newsletter, plus a link to fill in the national data opt out team contact form to be added to the NHS Digital mailing list.
The following text on this page is extracted from the NHS Digital website:
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 identifiable health and care information is used. The system will offer patients and the public the opportunity to make an informed choice about whether they wish their personally identifiable data to be used just for their individual care and treatment or also used for research and planning purposes.
Choosing to opt-out
Patients and the public who decide they do not want their personally identifiable data used for planning and research purposes will be able to set their national data opt-out choice online. We will provide a non-digital alternative for patients and the public who can't or don't want to use an online system. Individuals can change their mind anytime. Existing Type 2 opt-outs (the option for a patient to register with their GP, to prevent their identifiable data leaving NHS Digital) will be converted to the new national data opt-out. Patients with type 2 opt-outs will be informed of this change individually.
NHS Digital is developing the system now. Patients and the public will be able to use the system from 25 May 2018. All health and care organisations will be required to uphold patient and public choices by March 2020. The national data opt-out will be introduced alongside the new data protection legislation.
Information for health and care professionals
If you work in health and care, the introduction of the national data opt-out will mean you have two new areas of responsibility. You will need to be aware of the service in case patients ask you about it and in time you will be expected to uphold these preferences and advise patients. There is an information pack below (Pack E1) which contains information about what organisations need to do now to be ready for the national data opt-out being available from 25 May 2018.
Everyone working in health and care needs to be aware of the national data opt-out so that they can inform and advise patients on where to go for more information about data use and the national data opt-out. The information shared by health and care staff will support patients to 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. More information will be provided on this in due course.
NHS Digital have 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.
Pack F Patient journey - coming soon
NHS Digital will provide more information and resources on their pages as the development of the new system progresses.
(Text extracted from NHS Digital website, 1st March 2018, available here)
National Data Guardian’s 2017 Report
The National Data Guardian (NDG) for Health and Care has published a report reviewing Dame Fiona Caldicott's first term in the office and looking at her current priorities. The publication of the National Data Guardian 2017 report: impact and influence for patients and service users marks just over three years since Dame Fiona was appointed as the first NDG.
The report sets out a clear case for the independent advice and challenge the NDG role provides to ensure that data collected by the NHS and social care services is properly safeguarded and used appropriately to improve care. It reinforces the fundamental requirement of building public trust for successful advancements in health and care based on data sharing.
Government Response to the National Data Guardian’s (NDG) Review (12th July 2017)The Government published its response to the National Data Guardian’s (NDG) Review of Data Security, Consent and Opt-Outs. ‘Your Data: Better Security, Better Choice, Better Care’ on 12 July 2017. The response is available here: Government Response, 12th July 2017
Dame Fiona issued an accompanying statement
The key recommendations regarding data sharing and opt-outs:
Existing Type 1 & 2 opt outs are addressed. Type 2 opt outs will be transitioned and Type 1 opt outs will be honoured until March 2020. There is information about this on page 26 of the response.
Dame Fiona has also written an article in the Times published today, which I attach and in which Dame Fiona says “Yet my support for the creation of a simple data opt-out does not mean that I want people to use it. I have confidence in the system to use my data responsibly to improve services for all”
National Data Guardian's Review published (6th July 2016)
The National Data Guardian for Health and Care has today published her Review of Data Security, Consent and Opt-Outs.
Dame Fiona Caldicott, the National Data Guardian for Health and Care (NDG), today publishes recommendations to strengthen the security of health and care information secure and to help the public make informed choices about how their data is used.