NHS England 'not clear enough' to patients about care.data opt-out

04/02/2014

Tim Kelsey, NHS England Director of Patients and Information, admitted, this morning, on BBC radio1, that NHS England had not been clear enough about patients’ right to opt out of the new care.data scheme. Tim stated: ‘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.’

According to pro confidentiality campaign group medConfidentia the scheme will extract identifiable medical information from the GP-held record of every person in England, store and process it in a central database and pass it on in various forms to companies and organisations inside and outside the NHS 2.

medConfidential3 today called on the Information Commissioner to rule that NHS England’s public communications campaign - involving a mail drop of 26 million leaflets, various media stories and engagement with charities and community organisations - was a failure, and to call a halt to 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 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 purposes other than their medical care - including being passed to companies outside the NHS in various forms.

‘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.’

Notes

1BBC Radio 4 Today, 4/2/14

2In 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

3medConfidential 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.