A movement for patients, relatives and carers Harnessing the patient voice to build confidence in the use of to save lives and improve outcomes
What does the National Data Opt-Out mean for cancer patients? - November 2018use MY data and Cancer52 have produced an updated short paper specifically looking at the implications of the National Data Opt-out for cancer patients. [November 2018]
This includes changes made to the way that Public Health England are managing the National Data Opt-out requests.
National Data Opt-out numbers update - March 2019
The National Data Opt-out publication provides statistics on the volumes of national data opt-outs. The National Data Opt-out was introduced on 25th May 2018 following recommendations from the National Data Guardian and it prevents the individual’s confidential patient information from being shared for purposes beyond their individual care across the health and care system in England.
It replaces the previous Type 2 patient opt-outs which enabled patients to register an opt-out via their GP Practice. It includes the number of people who have had a national data opt-out.
Extracting from the published figures published in December 2018 showed an increase of just 260 newly recorded opt-outs when compared to the previous month. The January, February and March 2019 extracts show a similarly small increase of just 250, 857 and 345. Previous monthly increases had been in the order of several thousand, so the low monthly increases in the December, January, February and March figures remain notably different from previous months.
In terms of the opt-out process, any patient that had a type 2 opt-out recorded on a GP system or before 11 October 2018 has had it automatically converted to a national data opt-out. After that point, new type 2 opt-outs recorded on GP systems will not be converted.
The proportions of opt-outs across different age groups continue to range from 1.7% to 4.3%.
Figures published by both GP Practice and CCG continue to show variation. In fact just 1% of GP Practices account for 16% of the total number of opt-outs. And 10% of the total number of opt-outs come from just 0.4% of the practices in the country.
At the CCG level, the proportion of opt-outs ranges from over 10% in Oldham CCG to just 0.3% in Bradford City CCG. A short breakdown of the overal national trends is shown below, with the full set of tables available here on the NHS Digital site
National Data Opt-out and Primary Care information - use MY data report, September 2018
The National Data Opt-out was introduced on 25 May 2018. In the initial months after its introduction, information from several use MY data members indicated that their GP practice had given either confusing or erroneous information about the National Data Opt-out and patient data choices.
While hoping that the examples were not typical, we thought it would be useful to find out by casting the net wider amongst our membership, with the aim of feeding back in the first instance to the Royal College of General Practitioners.
use MY data has been actively engaging with primary care for some time, in order to understand the challenges primary care faces in relation to patient data and learn how members might assist in this area.
We ran a survey of our membership throughout August and the results are presented in the report. Prior to publication, we have shared the report with:
Please direct any queries to firstname.lastname@example.org
National Opt-out Newsletter update - July 2018
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.