Public information campaign to make people aware of their rights to prevent their information being used for research
NHS England has implemented the right for patients to opt out of their data being used for research or planning, and launched a six-week public information campaign to raise awareness of the new protections.
The move adds to the clauses in the newly implemented General Data Protection Regulation (GDPR) that gives the public more control over how their personal information is used.
Health and care organisations have begun to collect individuals’ preferences to replace the previous ‘type 2’ opt-out, which required NHS Digital to refrain from sharing patient’s confidential information for purposes beyond their direct care.
Any person with an existing type 2 opt-out will have it automatically converted to the new national data opt-out, which can be viewed and changed by using the relevant online service.
The information campaign will initially focus on GDPR and from early June begin promoting the choice in the new national data opt-out. NHS England said it will monitor the impact to ensure the messages reach the public.
Health Minister Lord O’Shaughnessy (pictured) said: “If you’re a patient, you want to know that – wherever you’re treated in the NHS – medical staff can access all the relevant health data about you. This is especially true for people with complex conditions.
“At the same time, patients want to know their data is stored safely and that they have choices about how it’s used for purposes beyond their direct care, like research. Together, the new GDPR rules and the national data opt-out will give patients that reassurance.”
There have been long running concerns about the use of patient data for research, which were heightened by the controversy over the care.data programme. This was dropped two years ago after complaints that the public had not been sufficiently informed of its opt-out and a critical report by Dame Fiona Caldicott, the national data guardian.