Minister confirms end of controversial programme for using patient data in research – but makes clear sharing information will continue
The troubled care.data programme has been axed – but it will still be possible to share patients’ medical data under a new governance regime, a Government minister has announced.
NHS England formally called time on the project to collect data from GP surgeries for research purposes – shelved two years ago – after a critical report by Dame Fiona Caldicott, the national data guardian.
Despite the anonymisation of data, care.data hit the rocks amid protests that the public had been left in the dark about the database being created and had not received leaflets explaining the scheme.
But health minister George Freeman immediately announced a new consent and opt-out model, proposed by the Caldicott – vowing to plough ahead with the “digital information revolution”.
That new model promises the “right to opt out”, but also contains an 11-strong list of circumstances in which it will not apply.
These include when information is required by the Care Quality Commission (CQC), the Health and Social Care Information Centre (HSCIC), the NHS Counter Fraud Service, professional regulatory bodies, coroners and police.
In addition, opt-outs can be waived when employers must report deaths and major injuries and when health professionals must report notifiable diseases, or cases of female genital mutilation.
Freeman said: “Dame Fiona’s review found that, broadly, the public does trust the NHS with confidential data. However, we cannot be complacent.
“That’s why we want to do more to realise the benefits that come from sharing information safely and consistently across the health and care system where there is a legitimate reason for doing so.”
Those benefits include “improving the way that the NHS uses information to check the quality of care, or by researchers being able to use data to improve treatment and care”, he said.
On care.data, Freeman added: “The consent and opt-out model proposed by the review goes further than the approach that was planned for care.data and its pathfinder areas.
“In light of Dame Fiona’s recommendations, NHS England has taken the decision to close the care.data programme.
“However, the government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients.”
The minister announced a public consultation on the proposed system of opt-outs, alongside 10 security standards that Dame Fiona suggests NHS organisations must meet.
Image from GOV.UK, Open Government Licence v3.0