The national data opt-out programme has been launched, with a view to allowing people to choose how their health data is used for research and planning.
The national data opt-out replaces the previous ‘type 2’ opt-out. This allowed patients to tell NHS Digital they did not want their data shared for purposes other than their direct care.
NHS Digital has confirmed that any person with an existing type 2 opt-out will have it automatically converted to a national data opt-out from today and will shortly receive a letter giving them more information and a leaflet explaining the new system.
Initially, the opt-out programme only covers data held by NHS Digital. But all other organisations that use health and care information are due to comply by March 2020.
According to the NHS Choices website, those wishing to manage their preferences need to visit the ‘Your NHS Data Matters’ website.
In a seemingly longwinded process, people are required to submit their name, date of birth, postcode and NHS number.
They are then sent a one-time verification code which will give them access to manage their preferences online.
On a national level, NHS England is also planning to work with the Information Commissioners Office on a joint ‘your data matters’ public campaign with the aim of promoting public trust and reassurance.
The campaign is due to last six weeks with an initial focus on the General Data Protection Regulation (GDPR) and then, from early June, a specific focus on the national data opt-out.
This will include include commercial radio, national and website advertising.
Simon Eccles, CCIO for Health and Care, said: “This campaign will highlight to the public how the health and care system uses their data, safely and securely, to improve the care they receive, plan services and research new treatments and to tell the public ‘their data matters to the NHS’.”
The launch of the programme follows the controversial care.data programme, which was launched in 2012.
The project aimed to expand the Hospital Episode Statistics (HES) database – which contains details of all admissions, A&E attendances and outpatient appointments at NHS hospitals in England – by linking it to other data sets, starting with GP data.
However it was quickly met with heavy criticism for confusion over what the data would be used for and how patients could opt out.
While NHS England attempted to run a public information campaign in January 2014, the campaign was criticised by clinicians for sending out a ‘junk mail’ leaflet that failed to mention the project by name, or include an opt-out form.
The project was eventually dropped in July 2016 following the release of Dame Fiona Caldicott’s report on security and information governance in the NHS.