Two reviews commissioned by the DH were published on Wednesday – the Review of Data Security, Consent and Opt-Outs from national data guardian (NDG) Dame Fiona Caldicott and the Safe data, safe care report from the CQC.
Health minister George Freeman said NHS England had taken the decision to ‘close the care.data programme’ in light of the findings.
But he warned that the NHS must match the pace of modern life and become ‘fully digital’, with GP, pharmacy and hospital records all based on digital platforms.
The Caldicott review concluded that trust in the way personal data is used by the NHS ‘has been eroded’ and work must be done to engage them and show them the benefits of data sharing.
It made 20 recommendations to the DH designed to strengthen safeguards for keeping health and care information secure and ensuring the public can make informed choices on how their data is used.
Among these, it calls for the DH to implement harsher sanctions in place to prevent malicious data breaches and for CCGs to provide evidence they taking action to improve cyber security and identify any vulnerabilities.
It added that the CQC should ‘amend its inspection framework’ to take a stricter assurance that practices and other services are adhering to data security standards.
It also recommended that a new consent/opt out model should be adopted to allow people to opt out of their personal confidential data being used for purposes beyond their direct care – even if they previously gave permission.
Although not explicitly looked at by the review, it advised that, in light of its findings, the government should ‘consider the future of the care.data programme’.
‘Everyone who uses health and care services should be able to trust that their personal confidential data is protected,’ Dame Fiona said.
‘Unfortunately trust in the use of personal confidential data has been eroded and steps need to be taken to demonstrate trustworthiness and ensure that the public can have confidence in the system.’
Mr Freeman said: ‘I can confirm today that the government is supportive of the introduction of stronger criminal sanctions against those who use anonymised data to re-identify individuals.’
He added: ‘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.’
Reacting to the Caldicott report, Professor Nigel Mathers, honorary secretary for the RCGP, said: ‘The NHS must be beyond reproach when it comes to the use of patient data for any purpose, so Dame Fiona is right to say that further steps must be taken to build public trust for the use of their information and we welcome her call for a much fuller conversation with the public.’