For immediate release – Thursday 8 May 2014

Government rejects statutory ‘Caldicott Guardian for England’

Last night in the House of Lords, Government peers voted to reject an amendment to the Care Bill that would have put independent oversight over the handling of patient information across the entire NHS and care system onto a statutory basis.

Despite assurances that the Government was “sympathetic to the desire to put the Oversight Panel on a statutory basis”, Lord Owen’s amendment [1] was voted down 259 to 165. An amendment by Lord Turnberg that would have limited secondary use of patient data to the provision of care and “biomedical and health research” was similarly defeated.

The Government’s own ‘McDonald’s clause’ – “for the promotion of health” – will continue to permit access by pharmaceutical marketers, information intermediaries such as Harvey Walsh – which boasts of holding over a billion NHS patient hospital records [2] – and other commercial re-use licensees, as probed by the Health Select Committee in April. [3]

Phil Booth, coordinator of medConfidential [4], said:

“Rather than legislating to restore public confidence, the government has opened a loophole a mile wide through which to keep selling NHS patient data.

“It doesn’t matter how ‘sympathetic’ ministers are to public concerns. The fact is the government has ducked the only sort of independent scrutiny that might help convince both patients and professionals to trust or have confidence in what it and its arms-length bodies want to do with the medical records of every man, woman and child in the country.

“Rather than putting in place a statutory Caldicott Guardian for England, with the independence and authority to command real respect and trust, the government are all hiding behind trees. Again.” [5]

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Notes for editors

1) Briefing on the care.data amendments: http://medconfidential.org/2014/lords-care-bill/ including links to Lord Owen’s and Lord Turnberg’s amendments.

2) ‘NHS sells a billion patient records’, Sunday Times, 16/3/14: http://www.thesundaytimes.co.uk/sto/news/uk_news/Health/article1388324.ece and the sort of thing pharmaceutical marketers are doing with it, reported in the Guardian, 17/3/14: http://www.theguardian.com/technology/2014/mar/17/online-tool-identify-public-figures-medical-care. Neither Harvey Walsh nor OmegaSolver will be prevented from buying NHS patient data under the Government’s ‘McDonald’s clause’.

3) Oral evidence to Health Select Committee in Handling of NHS patient data inquiry, 8/4/14: http://data.parliament.uk/writtenevidence/WrittenEvidence.svc/EvidenceHtml/8416

Q272 Barbara Keeley MP: For all those 249 organisations with a commercial reuse licence, can we know who all the end users of our data are?

Kingsley Manning, Chair HSCIC: No, because they are using it and putting it into additional services.

While commercial re-use licences remain in operation, even HSCIC admits it can’t know who has access to what patient data, or what it is being used for.

4) medConfidential campaigns for confidentiality and consent in health and social care, seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Founded in January 2013, medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals.

5) Quote from “Tim Kelsey discovers that care.data is in trouble” YouTube video, 25/2/14:  http://www.youtube.com/watch?v=SgrZ9ZlTTIc

For further information or for immediate or future interview, please contact Sam Smith of medConfidential on 07890 210 746 or sam@medconfidential.org

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