NHS England is pulling the plug on its highly controversial medical information sharing scheme care.data, following years of relentless criticism and concerns over data security, public awareness and commercial access.
Life sciences minister George Freeman’s announcement came on the back of a review into safeguards for sharing patient data by National Data Guardian Fiona Caldicott, which proposed 10 security standards to be applied in every health and care organisation handling personal confidential information.
These include measures to protect systems against data breaches, ensuring NHS leadership takes ownership and responsibility for data security, and that organisations are fully prepared “to meet the challenges of the digital age”.
Crucially, Dame Fiona has recommended a new consent/opt-out model, which goes further than the approach that was planned for care.data, in order to give people a less complex choice about how their personal confidential information is used.
Consequently, the government has now launched a consultation on the proposed data security standards and new consent and opt-outs model for data sharing in the NHS and social care, to better gauge public opinion on these issues.
Freeman also reiterated the government’s “commitment to realising the benefits of sharing information, as an essential part of improving outcomes for patients,” noting that “this work will now be taken forward by the National Information Board, in close collaboration with the primary care community, in order to retain public confidence and to drive better care for patients”.
The care.data programme was designed to link information from different NHS providers to provide timely and accurate information to patients, clinicians and commissioners about treatments and care. But plans to centrally store patient data and allow third-parties access – albeit in pseudonomised form – was a key bone of contention for critics, not to mention the significant lack of public awareness on the scheme.
Phil Booth, Coordinator of medConfidential, a strong care.data opponent, remains sceptical over the scheme’s closure. “One toxic brand may have ended, but Government policy continues to be the widest sharing of every patient’s most private data”.
