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New legal promise to protect patient data privacy

DH promises legislation over care.data confidentiality

Adrian O'Dowd

Monday, 03 March 2014

The government is planning to introduce new laws that should protect the confidentiality of patient data in an attempt to reassure doctors and the public that the care.data scheme will be safe.

Health secretary Jeremy Hunt said he intended to introduce amendments to the Care Bill, which is currently going through parliament, and other legislation that will help restore confidence in the controversial care.data programme.

Under the programme, data from primary care will be extracted and brought together with data from secondary care to make pseudonymised data available to “approved groups of users” such as commissioners and researchers.

Fears over patient confidentiality, how the Health and Social Care Information Centre (HSCIC) will handle the data, as well as lack of awareness amongst the public of the scheme and how to opt out of it, recently prompted NHS England to delay the planned start of the scheme on 1 April by six months.

Mr Hunt said at the weekend he would legislate on the care.data programme to provide “rock-solid assurance” to patients and doctors’ organisations that confidential patient information would not be sold for commercial insurance purposes.

Although he was fully supportive of the scheme, Mr Hunt said he was prepared to put matters beyond doubt because of concerns raised about the potential sharing of confidential information with commercial organisations such as insurance firms.

The Department of Health has been asked to implement new measures to provide, under statute, for a requirement that a patient’s opt out must be respected so if they do opt out, no identifiable data about them will flow to the HSCIC.

New law will also expressly prevent the HSCIC from sharing personal information where there is not a clear health or care benefit for people, thus preventing any possibility of releasing identifiable or potentially identifiable patient data for commercial insurance or other purely commercial purposes.

There will be a strengthening of criminal sanctions for any organisations which breach data protection laws by disclosing people's personal data and those who do so, will be banned from accessing NHS data ever again.

New legislation will also bind the HSCIC to protect individuals’ confidentiality when anonymised data is released.

A spokesperson for Mr Hunt 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.”

Professor Nigel Mathers, honorary secretary of the RCGP, welcomed the news, saying: "We are very grateful to the government for listening to the concerns of GPs and for meeting the assurances sought by the RCGP in order to ensure that patients' data is protected.

"Care.data is a vitally important project that has the capacity to bring enormous health benefits to patients up and down the country. However it was critical the government was able to give the assurances the profession has been seeking, as without them the whole enterprise was at risk of sinking without trace due a crisis of confidence among GPs and patients.

"What is now needed is a stepped up publicity campaign to raise awareness of care.data and the safeguards that will exist, so that people are able to make an informed decision about whether to exercise their right to opt out."

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