For immediate release – Tuesday, 4th Feb 2014

Tim Kelsey, NHS England Director of Patients and Information, this morning admitted that NHS England had ‘not been clear enough’ [1] about patients’ right to opt out of the new ‘care.data’ scheme.

The scheme will extract identifiable medical information from the GP-held record of every man, woman and child in England, store and process it in a central database and pass it in various forms to companies and organisations inside and outside the NHS [2].

medConfidential [3] today called on the Information Commissioner to rule that NHS England’s public communications campaign – involving a mail drop of 26 million junk mail leaflets, media stories and engagement with charities and community organisations – was a failure, and to halt the monthly extraction of confidential patient information from GP systems scheduled to begin in March.

Phil Booth, coordinator of medConfidential, said:

“Millions of people still don’t have a clue that their family’s medical records are about to be uploaded in identifiable form to a body they’ve never heard of, to be used for things other than their medical care – including being passed to companies outside the NHS.

“Now the head of the whole scheme has admitted they haven’t been clear enough about what patients must do to opt out, the game is up. No-one, least of all the Information Commissioner, can reasonably claim that patients have been properly notified. These uploads cannot go ahead with so many patients still being kept in the dark.”

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Notes for editors

1) BBC Radio 4 Today, 4/2/14: http://www.bbc.co.uk/programmes/p01rmpdy (Timecode 10:54)

Tim Kelsey: I think, that, maybe we haven’t been clear enough about the opt-out. I agree with that. Let me be absolutely clear now, that people who don’t trust the NHS to manage their data securely now have a new right, to opt out of this scheme.  To be honest, all they need to do is contact their GP to opt out.

2) In its application to extend the types of organisations who can apply for access to care.data, NHS England wrote: “This addendum proposes that applications may be considered by the HSCIC from all organisations, subject to their eligibility as determined through the HSCIC’s governance processes. Such organisations may include research bodies, information intermediaries, companies, charities, and others.” – care.data Addendum Papers, http://bit.ly/1cVvXAL

3) medConfidential campaigns for confidentiality and consent in health and social care. It was founded in January 2013 in response to the imminent and serious threat posed by radical changes in the way patient health information is to be collected and passed on. medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals. Opt out forms and letters: www.medconfidential.org/how-to-opt-out/

For further information or for immediate or future interview, please contact Phil Booth, coordinator of medConfidential, on 07974 230 839 or phil@medconfidential.org 

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