NHS England has scrapped plans for care.data, a single database to join up GP and hospital patients' medical information, following two recent critical reports, with Dame Fiona Caldicott, National Data Guardian for Health and Care concluding that “the public does trust the NHS with confidential data,” while the CareQuality Commission also called for increased security and confidentiality.
The reports sought increased public dialogue and transparency over data use and opt-outs, noting use of the information was greater than had originally been envisaged.
Minister for Life Sciences, George Freeman MP, commissioned the reports in 2015 after the programme was halted in 2014 following heavy criticism from groups including the British Medical Association (BMA) and the Royal College of GPs after leaks that the information could be sold to insurance and pharmaceutical companies. A leaked document revealed that the Royal Free NHS trust had signed a deal with Google's DeepMind allowing access to 1.6 million patient records.
Freeman issued a statement saying, "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.
"Therefore 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."
Sharing of information was intended to allow the NHS to map diseases more quickly, understand patients' journeys through the health system, see the outcomes of their treatments and address variations in care across the country, improve the quality of care by monitoring adherence to national treatment guidelines and help plan where investment and changes are needed in NHS services.
Caldicott proposes ten security standards to be applied in every health and care organisation that handles personal confidential information. These include measures intended to protect systems against data breaches, ensuring that NHS leadership takes ownership and responsibility for data security and ensuring that organisations are as prepared as they can be to meet the challenges of the digital age. She also emphasised the vital importance of data sharing and proposed a new consent/opt-out model, which will give people a less complex choice about how their personal confidential information is used. The importance of protecting anonymised data was highlighted as necessary to give the public the assurances they need that they will not be re-identified. Freeman also confirmed that the Government supports the introduction of stronger criminal sanctions against those who use anonymised data to re-identify individuals. Both reviews highlighted the importance of removing outdated IT systems to improve data security.
The closure has not placated critics, given the future plans mentioned by Freeman. Phil Booth, coordinator of medConfidential said on the organisation's website: “One toxic brand may have ended, but Government policy continues to be the widest sharing of every patient's most private data.
“... the Government's consultation on consent asks the public to comment on how Government should go about ignoring the opt outs that patients requested. The programme did exist, and whatever data the Government may wish to continue to sell to their commercial friends, patients dissented from data about them being shared. Their wishes must be honoured.”
In a separate report, earlier this month, NHS England said that more than 55 million patients are now be able to access their GP records online, including via smartphones.
Official figures show that over 95 percent of GP practices are now set up to offer online access to detailed GP records including test results and diagnoses as well as referrals, immunisations, procedures and medications history. This is up from just three percent practices in January this year.
