The Health and Social Care Information Centre (HSCIC) will be banned from sharing personal information where there is no health benefit, the government has announced.
Changes to legislation around the care.data programme aim to assure patients and doctors that confidential information will not be sold off, according to the Department of Health.
Various organisations had raised concerns that confidential information would be made available to commercial organisations such as insurance firms when information from practice records shared with the HSCIC.
Health Secretary Jeremy Hunt has called for new measures which will expressly ban the HSCIC from sharing information for commercial reasons.
New legislation will also ensure that a patient’s opt out will be “respected”, meaning that if a patient objects no information about them will go to HSCIC.
An expert committee will be created to advise Hunt on the statutory footing for releasing identifiable or potentially identifiable patient data and create strict new criteria in statute to govern their advice.
A source close to the Health Secretary said: “The principles around this programme, which will bring real benefits to patients, are fundamentally right, and we completely support them. But, alongside a new campaign from NHS England to explain the programme to the public and GPs, we also need to ensure that robust legislation is in place to address their concerns.”
Phil Booth, coordinator of medConfidential said: “A ‘one strike and you’re out’ approach to the abuse and misuse of patient data, if rigorously enforced, could be a game-changer. The fines that the courts and the Information Commissioner can hand out are peanuts in comparison to the turnover of some of the companies that will still be getting access to patient data.
“We are less convinced by claims that legislation will prevent patient-level data being released when there is 'not a clear health or care benefit for people'. The whole care.data scheme is engineered to pass around data for ‘secondary purposes’, not for direct care. We don’t believe it is helpful for the government to continue to conflate the future benefits of research use with things like the administrative and monitoring purposes of commissioning.”