For immediate release – Friday 21 March 2014

Patient advocacy groups today called on the head of the Medical Research Council, Professor Sir John Savill, to publicly apologise for characterising people who have legitimate concerns about NHS England’s controversial care.data scheme as “consent fetishists”.[1]

Research is just one of several proposed ‘uses’ of patient data – which will by default be extracted in identifiable form from the GP records of every man, woman and child in England this autumn – but patients will be given no option to decide how their information will be used, e.g. you wouldn’t be able to choose for your medical data to be used in research, but not be sold to third parties. The only choice patients will be given to protect their and their family’s medical confidentiality is to opt out.

The care.data scheme conflates research with other ‘secondary uses’ such as commissioning, audit or sale to third parties outside the NHS. Despite research being one of the most common benefits claimed for the scheme, research was not a top priority when NHS England first applied to extract data from GP records and in fact care.data has not yet received approval for research use of patients’ medical information.[2]

Phil Booth, coordinator of medConfidential,[3] said:

“Sir John Savill owes an apology to every patient in the country. His arrogant and offensive remark pooh-poohs the legitimate and serious concerns many people have about this toxic scheme.

“care.data is not just about research. In cheerleading for a scheme the breadth of which he seems not to grasp, and with echoes of the GM debacle,[4] Sir John is putting the MRC’s own particular interests over the right of every NHS patient to expect that their doctor will keep their most intimate and sensitive secrets.”

Roger Goss, co-director of Patient Concern, [5] said:

“We support good medical research involving use of identifiable medical records but only with patients’ properly informed explicit consent. This is common sense – not fetishism. Plenty of people have overwhelmingly good reasons for prioritising their privacy.”

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Notes for editors

1) See, e.g. http://www.thetimes.co.uk/tto/health/news/article4040095.ece and http://www.hsj.co.uk/news/mrc-head-brands-caredata-naysayers-consent-fetishists/5069163.article#.Uywru4Xvvcg

2) See pp5-8 of GPES Independent Advisory Group minutes for 12/9/13: http://www.hscic.gov.uk/media/12911/GPES-IAG-Minutes-for-12-September-2013/pdf/GPES_IAG_Minutes_12.09.13.pdf – these relate to the ‘care.data Addendum’, in which NHS England proposed that requests for patient data by all organisations, not just researchers, be considered: http://www.hscic.gov.uk/article/3525/Caredata

3) 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.

care.data opt out forms and letters available here: www.medconfidential.org/how-to-opt-out/

4) See last paragraph of Nuffield Council on Bioethics blog, 21/3/14: http://blog.nuffieldbioethics.org/?p=1059

5) Patient Concern has campaigned for patient choice and patient empowerment since 1999.

For further information or for immediate or future interview, please contact Phil Booth, coordinator of medConfidential, on 07974 230 839 or phil@medconfidential.org or Roger Goss, co-director of Patient Concern, on 01903 785 776 or 07946 644 110.

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